4:00 AM 10/4/2004
Sydney is doing well but I feel like her hearing, or lack there of, is starting to affect her speech. Maybe my head has been stuffed over the last weekend but I sure had some difficulty understanding her. I am actually anxious now to get the hearing aids in her ears. We ordered them just over a week ago. I anticipate that they will arrive in the next week or two. We ended up going with the best hearing aids that we could find. After comparing all of the brands we discovered that it was just not that much more expensive to get the fancy hearing aids that had 15 channels and all of the bells and whistles. I believe it was only about a $200 difference between that one and the next best choice. With all of the additional functionality we decided to go with it. After insurance pays I am guessing that we will owe roughly $3300 on this first set of hearing aids. The good news is that they will give us almost a year to pay them off - interest free.
Other than that, Sydney seems to be pretty normal. She has a bruise on her knee and has complained about both leg pain and belly "owies" over the weekend. Yes, these are potential scary signs of a possible relapse but we are not at the point of freaking out quite yet. As it turns out, these are also signs of banging her knee on the table and eating to much chunk food during the day. The nasty thoughts of neuroblastoma never leave your mind though. It is a constant reminder of how lucky we are today and that we have to take advantage of every moment that we have together. In that sense it is a wonderful gift (yes, I said gift). The ability to appreciate every moment you have with your child is a gift and I am still thankful, in some odd way, that I learned that through this journey. It really clarifies my own mortality and forces me to appreciate what I have. As all of the drama has died down and everyone has reentered their lives I have worried about forgetting. I have worried about letting my life fall back in to the routine of letting life just slip by. I remember, before Sydney was diagnosed, I was a bystander in life. I just let the days go on and I was always worried about tomorrow. Now though, I am a life participant and have come to realize that now is what is important. I am living my life and sharing it with the ones that I love. I have a purpose and although I am still scared I feel like I am living lifetimes with my family. It doesn't get better than this.
7:10 AM 10/5/2004
Work has demanded that I don't get a chance to write in my diary today. No worries. I still have a purpose.
4:50 AM 10/6/2004
OUT OF THE MOUTHS OF BABES
I am always amazed at the amount of punishment that I inflict upon myself. Generally speaking, I am fairly good at watching what I say around Sydney. I make sure not to use bad words and I do my best to emulate good "human beingness" After all, it is important for Sydney to have good role models as she grows up. As a parent, you are a role model whether you like it or not. The problem is that, even when I think I am doing a good job, reality jumps up to bite me. Sydney is emulating behaviors that are not genetic, they are not learned from Lynley, they are not learned from junior birdman, but instead, learned straight from her father. I am quickly learning how entirely annoying I can be. I am anal, perfectionistic, demanding, and self-assured - too self-assured if Sydney is any good at being a daddy barometer. You would think that this whole "cancer" journey would have been enough to beat some of these traits out of me but it is now clear that much more has to be done. Sydney is turning into "mini me." It is really funny to watch someone unintentionally emulate your behavior and it is great to watch Sydney grow up and begin to do things. I just wish she would have picked some other traits of her father's to copy. I see it mostly in the afternoons when I am spending time with the kiddos. I will ask Sydney to do something. It doesn't really matter what it is. For the sake of this story we will just say that I ask her to go potty (By the way, she is doing really well in this area.) She will say, "Now daddy, you need to wait a minute. I am very busy." It is annoying to hear your three year old tell you this but even more annoying when you realize you just had this conversation in reverse ten short minutes earlier. I will then ask again in a more demanding tone. After all, I don't want to be cleaning potty out of the carpet. Sydney will quickly snap back with something like. "Daddy, I am not finished. You just need to keep your pants on." At this point I really begin to realize that she is doing exactly what I do when I am in the middle of work or a project and she asks for me to do something. So, I ask again and she will finally succumb to my demands but not without a wise crack like, "Okay daddy, I am coming, but I don't think I will ever get this finished with all of these questions." Yes, a three year old said those words. And yes, she got them directly from me. It is clear that she is learning by example. It took me 30 some odd years to find a purpose. At this rate I think she might find one earlier.
5:50 AM 10/07/2004
We are starting to notice a trend with Sydney. Per Sydney's school's advice we have been breaking her into the idea of spending longer days at school. The only real reason that we have been picking her up at noon was because we were jealous and we wanted to spend the afternoons with her. By extending her days at preschool the educators felt that it would benefit her socially and developmentally. We have now officially tried leaving her for the full day on two occasions now. Unfortunately, we are now discovering a byproduct of leaving her at school for so long. When we pick her up she is wild - wild and obstinate. I have tried to think of why this might be occurring but for the life of me I can't figure it out. All I know for sure is that if we leave her all day we had better be well rested because she will be a terror when she gets home. The best guess that we can come up with is that she is tired. Although she shows no outward signs of tiredness (i.e. droopy eyelids, drowsiness, etc.) the current belief is that she is just totally frazzled. She does exhibit the signs of being emotional tired and on edge. She can be argumentative and, definitely, obstinate. She did so well through all of her treatment and she has recovered so well that we sometimes forget all that she has been through. Although it has been ten months since her transplant her little body still has not fully recovered. I don't think it is because she did not tolerate it well or because she was slow to heal but rather that the therapy is just that hard and it will take years to truly be fully recovered. Dr. Eames had warned us about this in our final meeting. Given all of this we have to be more careful and we have to watch these things carefully. We have to be aware, even when Sydney seems so completely normal. Lynley and I have not decided what we are going to do. Lynley seems to think that it would be better to not take her the full day and, personally, I am riding the fence. Yes, if it truly is wearing her out and that is the reason for her frazzled state then it might be a good idea to give her some more time before we allow her to become so active. But then, on the other side of the coin, isn't it good to push her. Would it be true to say that by pushing her limits we are exercising her body and speeding her to a truly full recovery? Yes, even after therapy, there are still many unanswered questions but I am entirely thankful to have to be in such a quandary. My purpose keeps me sharp and keeps my all on the ball.
5:40 AM 10/8/2004
Another quick update. Today I will be leaving for Chicago. The Children's Neuroblastoma Cancer Foundation is have a parent's meeting this weekend and I am flying out this afternoon to attend. I will be back on Sunday around noon. Until then, Lynley will be left to fend for herself with our adorable little Gremlins. Good things are happening and my purpose is invigorating.
5:50 AM 10/11/2004
BACK IN THE SADDLE AGAIN
Well, I got back from my trip to the CNCF's Parent's Meeting on Sunday afternoon to a family full of "sickies." Graham is pulling at his ears and Sydney does not look well. Sydney woke up Sunday morning with a fever. This is our first post treatment fever and I am trying not to let the worries get the best of me. I can always find a reason that these symptoms mean cancer but I immediately try and justify all of the "sickness" with the other "normal" diagnoses. Here are the facts. Sydney had a low fever and a runny nose. The fever was treated with Tylenol and we have not seen hide nor hair of it since. She spent much of the morning in a state of lethargy and there were reports of her nose barometer changing colors (i.e. the constant drip from her nose which has been running for well over a year now changed from clear to murky). Sporadically, she has also complained of tummy owies and foot owies but most of these declarations were a direct result of Lynley and I's constant questioning and prodding. The only other noticeable difference in Sydney is her color. She looks anemic to us. (okay, I am out of the cancer world now. She doesn't look anemic, she looks pale.) In the afternoon she was active and playful and we spent much of the rest of the day running around the house. Now, as a parent of a child with neuroblastoma, I am paranoid. I know that. Fevers aren't good and I can't directly attribute this one to anything other than the possibility of a virus. The fact that she is complaining about pain in her abdomen is also frightening but this could also be related to a stomach virus or the fact that we have seen it more often since we started potty training her. She is doing extremely well with potty training but refuses to go "number 2" in the toilet and politely asks us to put on a diaper for her to relieve herself. The direct result of this choice is that she then holds it until the end of the day at which point she is truly crammed full of it. We are guestimating that this is the cause of some of the sporadic pain because it always subsides after she relieves herself. Her foot owies are also of concern but this could be attributed to just about any normal toddler injury. Her pale look is what bothers me the most at this point. I know anemia can be a sign of neuroblastoma. I also know that when people get sick they get pale but that does not seem to matter much to me right now. I just want to get a blood test done so that we can make sure. That would be a huge relief in my mind. So, with that being said, here is the plan. This morning we are scheduling a doctor's appointment with Dr. Debbie, her pediatrician, at which point we will ask for the usual check up (don't forget to feel around her abdomen), a battery of tests, and, most importantly, a CBC. Hopefully, we can get the orders soon enough that we can get the results back today. That would make for a much more relaxing night of rest. So, that is what is going on. Tomorrow I will talk about all of the great things that transpired at the parent's meeting but for now I must go. Dr. Debbie, get ready, the Dungan's are back and they have a purpose.
10/12/2004 5:00 AM
It has been a while since a have felt panic and sheer terror. I like the feeling about as much as the time before when this all began. Yesterday morning we took Sydney in to see her pediatrician, the esteemed Dr. Debbie. The appointment went well. Sydney was a little incorrigible but that always adds to the excitement. Her examination was thorough and thankfully nothing was found. Her abdomen was soft and not distended, her temperature was nearing normal, her ears, nose and throat were clear, and her ticker and breathing appeared normal. In fact, the only thing of real concern was the sporadic pain that she has complained of in her foot. Lynley has heard mention of the pain twice - once in the middle of the night early Saturday morning and another time on Sunday. The pain was great enough to wake her from sound sleep on one occasion and on the second kept her from wearing a shoe on her right foot. Sydney has also complained of tummy owies but those too have been sporadic and we blamed those on stool buildup. Regardless, Dr. Debbie was prepared for further research and a CBC and x-ray of her foot were ordered.
Following the doctor's appointment we headed to the familiar grounds of Cook Children's. Without too much waiting, her lab was drawn and an x-ray of her foot were completed. Sydney was her usual "tough cookie" self and with the exception of the explanation of the blood drawing procedure made it through the process with out drama. She was a strong little cookie and seemed to be more fascinated with the procedures than fearful of them. By about 1:00PM we were back in waiting mode. What would the test show? Would we feel any better?
Shortly before 2:00PM Lynley called me with the news. The CBC was clean. Everything was in normal ranges for a post transplant child. Anemia was not the cause of her paleness. The x-ray however was a different story. Upon a second look and comparison there was some concern of some demineralization of some of the bones in her right foot. A CT scan was ordered immediately. This was my first bout of true shock. All of a sudden all of the feelings and fears rushed from the back of my mind into the forefront of my reality. I know what demineralization is a sign of. First and foremost it could be a sign of a relapse, a sign of metastatic disease. It can, however, be due to the effects of her therapy. I don't particularly feel like getting too technical this morning but let's just assume that several of the treatments that Sydney endured could cause the late effect of bone demineralization. Either way it was not particularly good news although one of the causes we know would come at a much higher cost.
At 4:30 we were in the Sydney tunnel (ct scan). As always, Sydney went through this like a champ. She was still and stoic and her only request was that I sing lullaby songs to her toesies. She did not want them to move and she thought it would be easier if they just went to sleep. It sounds cute but she was actually being ornery. If a sang the song with too much tempo she would move her toes to the beat and say "Daddy sing slower, toesies are getting excited." Luckily, she was only slightly twerpful and when the scanner turned on she was just as still as could be.
It was not long before we heard some preliminary results. The ct scan did not confirm what we found on the x-ray. This was incredible news but not enough to know for sure. The fact of the matter is that we still have occasional fevers and sporadic pain. We still don't know and I don't need to tell you that the sporadic nature of these symptoms is consistent with neuroblastoma.
Today we will go in for an MRI. Although Sydney has never had one, an MRI can demonstrate bone metastasies with great accuracy. Magnetic resonance (MR) imaging (MRI) has the advantage of demonstrating lesions not visualized by other radiologic modalities. MRI is extremely sensitive in detecting abnormalities of bone marrow. Bone marrow involvement (with or without bony involvement) is seen as areas of decreased signal intensity on T1-weighted images because of the replacement of the fat tissue normally seen with high signal intensity by tumor cells.
I don't know the extent of the scanning that will be performed. I imagine it will just focus in on her footsies although I wish they could accidentally scan her entire body. Even in the best case scenario I don't know how much more relieved I will be. If today we find out that her foot is completely normal, we will still have some significant worries. For example, was she radiating pain to her foot that actually existed in another location (similar to the issues we had at diagnosis)? Is the MRI sensitive to her "breed" of neuroblastoma? If there is disease, is it enough to be seen with the MRI? This test has the potential to truly reduce our worries but it will be a long month as we wait for the next round of scans. I forgot how few guarantees exist in this world.
So, am I scared? You bet ya - almost like never before. I know what this all means. It has brought back the tightness in my chest, the aches in my neck, and the strange pounding in my chest. I am back on a different plane and I pray to God it is temporary. After all, it is my purpose.
5:00 AM 10/13/2004
The MRI was not scheduled yesterday. Okay, they "scheduled" the appointment but the actual MRI was not scheduled until Wednesday of next week. That simply would not do so Dr. Vert and Dr. Eames got on the phone and the next thing we knew we were scheduled for both an MRI and a bone scan today. At 9:00 AM we will be at the hospital to begin what I am sure is a day long event. We do not know the exact time of the scans themselves and there is some question as to whether Sydney will be sedated. Regardless we will put some Elamax on the back of her hands to numb the area just in case a peripheral IV is in the plans. We both imagine they will place one with or without the need for sedation. We hope to find out the results today but there are certainly no guarantees.
Although we were not tested yesterday we were not without a visit to Cook Children's. Yesterday, Sydney had a fitting for her "kitty ears" (hearing aids) She now officially has super kitty cat hearing. Sydney was very excited at the prospect of getting her new "kitty ears." We were all fairly sleepless the night before but for Sydney it was due to the prospect that she would be receiving her new "kitty ears." Throughout the appointment she had a wonderful time as we all learned about the new contraptions and practiced putting them in and taking them out of her ears. They are actually much smaller than I had anticipated. So far, Sydney loves them. I was expecting her to dislike the feel or be shocked by the change in sound but she seems totally comfortable with them. So far, she is adjusting well but it will be interesting to see how she handles it as the "newness" wears off. We are expecting some battles but she might just prove us wrong again.
And for Lynley and I - well - we wait. We wait and we wait. Neither of us is sleeping particularly well but once again we have jelled as a team. We always have a pretty good relationship but I am extremely amazed at our ability to comfort and strengthen one another during times of crisis. This somehow seems so much easier with her by my side. She is my rock and my soft place to fall. My purpose would be nothing without her.
5:30 AM 10/14/2004
DEAR GOD NOOOOOO!
I have cried most of the night and much of the morning. The preliminary news is that my dear sweet baby girl has relapsed. We are going back to the hospital this morning for further scans and assessments. It will be some time before we have a plan or understanding of the extent of her disease. My heart has been ripped out. Dear GOd Why????????????????????????
6:00 AM 10/15/2004
We arrived at Cook's at about 9:00 AM. Everyone that saw us knew that we were not supposed to be there. We felt a certain warmth being surrounded by so many that love and adore Sydney. Most did not have words. We did not blame them. Neither do we. I am still an emotional basket case but there is some good starting to emerge. There is positive that is starting to rise from our souls. At first, I was in shock. I don't know if it was my inability to accept our reality or the fact that I just lost all feeling but, I was numb. It did not take long, however, for the idea to settle into my mind. I am walking in a stupor. My mind is not functioning and I can't remember what happened five minutes ago. I still am spending much of the day with a tremendous sense of loss and pain. The tears come frequently and randomly but the moments when I am not crying are extremely positive. I still have a purpose. We don't know what lies ahead in Sydney's life. We know we (and she) have a hard road ahead but we are comforted by the fact that there are some things that we can control. We can make her feel tremendously loved. We can comfort her soul and we can be there for her. That is a tremendous amount of power at a time when we feel completely and utterly powerless. Thinking about what I can do for her gives me strength. Knowing that I am surrounded by a tremendously loving family, a wife whom I adore, children who have been the greatest gift in my life, and the multitudes of friends and unknowns who are standing by us gives me strength. Again, I do not know what our future holds but I am somehow empowered by the love that surrounds our family. I am able to put one foot in front of the other.
We are still waiting for many results but I will catch you up on what has transpired. On Wednesday, Sydney had her MRI and bone scan. Originally, the plan was to get an MRI of her foot and a full body bone scan. (This is important to note.) At the last minute, Dr. Vert decided to change the MRI to look at the leg as well. This change shifted us around in the schedule and greatly delayed our scans as Sydney was now going to consume the use of the MRI for most of the day. We were happy with the decision because, at the time, it was to give us more assurance that this was not, in fact, due to neuroblastoma. Unfortunately, it was the opposite answer that we received. And it was the MRI of the leg that ultimately gave us the necessary information. As we were waiting for Sydney to wake up in the recovery room we received the call from Dr. Eames. Sydney's scans were not good. The bone scan showed a spot on the right tibia. This, in and of itself, could have been from almost anything. It was the MRI that showed that "something" was in the marrow and working its way out of the bone. Unfortunately, given Sydney's history of disease there is little else in the world that would follow this pattern. At that moment, I asked Dr. Eames if I was allowed to hope that it was something else other than NB. She asked if I wanted her to be honest, I said yes, and she said no. Based on the scans the likelihood of it being something else was slim to none. That was the moment that we heard for the first time that Sydney had relapsed. I think everyone in the world let out a tear at that moment but I know for sure that the three of us sure did.
Yesterday, we began the process of a full "work up" to find out exactly how much disease we are working with. We had a bone marrow biopsy, aspirate, and full body CT. We are hoping to see as little disease as possible. The bone marrow aspirate was taken from her hips. We could not biopsy her tibia for fear of breaking the bone. Depending on what we find out it may be necessary to meet with an orthopedic surgeon early next week who has the tools and expertise to go in and sample Sydney's tibia. Now, here is a little silver lining to our dark cloud. The first glance at Sydney's bone marrow aspirate smears appeared to be clean. This is great news in that it shows that Sydney's disease could be somewhat localized. The fact that it might not be all over her body gives her a better chance at achieving a second remission. Had we found cells, (which we all expected) it may have not been necessary to biopsy her tibia. So now we wait for the bone marrow biopsy results. If this shows disease we will be starting back on chemotherapy on Monday. If not, we will be meeting with the orthopedic surgeon. We are still waiting on the CT results. We are hoping to find good news. We are hoping to find that the only place we see any issues are on her right tibia. We should know something this afternoon. Next week we will also have our MIGB scan. If you remember, this is the most specific test we have for NB. Unfortunately ,we could not have the scan any sooner due to the medications that Sydney has to take in preparation for the test. So, what is the plan?
Lynley and I are taking the kids to San Antonio to see Sea World this afternoon. Right now, Sydney is healthy and happy. We know that it will be a long time before we get to do something like this again so we are going to strike while the iron is hot. We are going with the Robertson's and her beloved Truman and Preston. We are going to get away and show Sydney as much happiness and joy as we possibly can. For two long days, we are all going to forget and focus in on what is important, our families and our friends.
As we get results of these tests today I will update them here. Thank you for being there for us and thank you for sharing in my purpose. Right now I can still touch her, I can still hold her and I can still feel her. I am not going to waste any time with sorrow. We have a life to live.
5:12 PM 10/17/2004
Bone marrow aspirates (hips), bone marrow biopsies(hips), and ct scans of total body came back clean. This is the first time I have touched my computer is two days. We are back from Sea World and we all had a great time. We wore all the kids out and Sydney is napping on the couch as I write. We made some tremendous memories and I will share them as time allows. I have to run. There are oncologists to talk to and decisions regarding treatment to make. It is possible that we will begin tomorrow. I will update as when I have some more time. I still have a purpose.
8:30 PM 10/17/2004
The kids are in bed. I can still hear Sydney jabbering to her stuffed kitties in her bed room. This all seems so surreal and difficult to believe. I find myself in a state of flux. I am unable to accept what I know to be true. I guess I am entering a state of denial. Right now, at this moment, I am not sad or scared. My mind is filtering out every negative thought before it enters my consciousness. I know the facts. I know what relapse means and I know as well as any that reality dictates that long term survival is unlikely but, I don't accept it. There must be a reason that this has happened. Their must be some deeper meaning. It can't be just this. Regardless, I am ready. I am ready to fight. I am ready to do whatever it takes. I will be there by her side. I will love her and I will do whatever it takes to get her through this. For some reason, I feel strong.
This weekend was tremendous. It was exactly what you would expect from any "National Lampoons Vacation" movie. It was stressful, funny, chaotic, and, most importantly, completely normal.
We left at about 5:00 on Friday evening. We decided to take two cars. We loaded all four kids in the suburban and, for the first leg of the trip, the moms drove the kids. This left Chance and I to be manly men and lead in the other car. After about an hour into our drive, Dr. Eames called to deliver the news. All of Sydney's tests from the day before were negative. Although this did not mean that she had not relapsed, it gave us a needed boost. This meant that Sydney's disease was localized to her tibia and was not widespread running rampant through her body. For us, less disease was definitely better than more. However, this did put us in a strange position. Dr. Eames was still advising us to start therapy at the beginning of the week. This means that we will be starting therapy without pathological proof of relapse. Yes, we will be starting chemotherapy without proving that the problems seen on the bone and MRI scans are actually neuroblastoma cells. I don't want to seem overly dramatic but it seems like a bold move to me. Everyone is it sure it is neuroblastoma, in fact, 99.999% sure. I, on the other hand, want to believe that it could be something else, something less menacing and deadly.
You see, I got myself into a little bit of a situation. When we received our first inkling that something could be wrong with Sydney I prayed to God that if they found something it would not be neuroblastoma. I prayed that it would be a bone infection or a secondary cancer, or anything that was survivable. I prayed that whatever we found that Sydney would survive it and grow up to be happy and healthy. I, once again, swore off every even mildly bad habit I have in trade. Now, I sit here questioning my faith and my decisions regarding treatment. If I accept the fact that it is neuroblastoma without having real proof I am admitting that God did not answer my prayers. I am giving up on my faith without really knowing for sure. I really have got quite the conundrum. I don't really tell you this story to show you how nuts I am but rather to show an excellent example of the strange things desperate parents think about. I have come to terms with my own "nuttiness" but I thought it important for other parents to know that they are not alone in there strange thoughts.
(a little later)
Dr. Eames just called. After asking a multitude of questions we have decided to forge on with treatment. Tomorrow afternoon Sydney should be going to surgery to have a port placed and, if all goes well, she will begin her chemo regimen in the evening. There is a tremendous amount to tell you but I have to get some work done. I am being pulled in many directions but my purpose is still guiding me.
7:00 AM 10/19/2004
First and foremost, Sydney is doing well. I do not know how long I will have to write before she wakes up so I want to make sure I get that in. Now..... Yesterday was a somewhat stressful day. Early in the morning we received a phone call from the oncology unit that Sydney's surgery was moved up to 11:30 AM. This meant she could not have breakfast and she would only be allowed to have fluids until 8:30 AM. This also meant that Lynley and I were in a mad dash to get everything ready for a hospital stay in less than 2 hours. This is not that big of a deal if you are prepared but we still had to bath ourselves, watch the kids, and perform all of the chores that we were anticipating to have all morning to accomplish. Let us just say that it made for a stressful and high paced morning. When we arrived at the hospital at 9:30 AM everything calmed down a bit. We were taken back and prepared for surgery at about 10:30. Unfortunately, about an hour later we found out that Sydney's surgery was postponed for a couple of hours. Sydney was extremely thirsty so they gave her about five minutes to drink as much juice as she could to tie her over for the next couple of hours. We then went up to the oncology floor to wait it out. We waited and waited and waited. No more juice. No more food. Just waiting. We waited until about 5:00 PM. At that point Sydney was completely out of her mind with thirst and hunger. It was not that we just waited between 11:30 AM and 5:00 PM. Our nurses constantly called to get an update of how long it would be. They kept saying "Just one more hour...." Needless to say, we were not particularly happy. Sydney could have eaten two complete meals and drank away most of the day had they just given us some warning. That would have been the way to prepare her for a week of chemo (not starving her for a complete day before starting) Communication was definitely lacking. We finally just told them that we were going to leave and they could schedule us tomorrow. There was no reason to put Sydney through any more of this torture. Amazingly enough, we were back in the pre surg area within about 5 minutes. Sydney was given some Versed (happy juice) and the next .hour of waiting went smoothly. Sydney finally entered surgery at 6:15 PM.
Sydney's surgery went smoothly. They placed a port about 3 inches above her left nipple. At this point all you can see is just a small bump about 3/4 of an inch in diameter and a small incision near her left clavicle. She woke up from surgery ornery, angry, and huuuuungry. She was not even close to happy and it brought back memories of the times before we realized she was allergic to morphine. I do not know what caused it (not that I blame her) but I assume the combination of drugs (versed, fentanyl, and whatever else they gave her) sent her into extreme unhappy land. It would be at least 30 minutes before the crying and screaming subsided. Once we got her back up to the oncology floor we began to feed her and our Sydney quickly returned. She had an entire bowl of chicken noodle soup, some hamburger, french fries, and an entire bowl full of pickle slices. At about 9:00 PM, with me beside her, we snuggled our way into sleepy land.
This morning we have some quirky blood tests which is strange. She has not received any chemo and her counts are acting as though they have. Now this could seem like the effects of disease but the weird thing is that her counts are doing the opposite of what we would expect to see if that were the case. Her RBC, hemoglobin, albumin, and chloride are low. Everything else is in perfectly normal ranges. I hope Dr. Eames got a good nights sleep because we all have some questions. Nobody seems to know what exactly is going on with her counts but I will figure it out.
This morning we will begin her first round of chemo. Sydney will be receiving a Vincristine push, followed by a thirty minute infusion of Topotecan and 6 hours of Cytoxin. I imagine we will be starting in the next hour or so.
I am ready. We will win. I am dawning my cape. I have a purpose.
5:37 AM 10/20/2004
Sydney has received her first day of chemo. She spent the majority of the day playing, laughing, giggling, and meowing. She finished the Cytoxin at about 8:00PM. That was then followed by a dressing change for her new port. Basically, the port is similar to a small pincushion under her skin. This will allow her to do all of the things she loves to do while going through treatment. Currently, the area is tender and bruised. Sydney was extremely uncomfortable during the dressing change and in obvious pain but she made it through like a trooper. Sydney's night was characterized with some stomach pain (a side effect of the Topotecan) but, all in all, she did fairly well. I imagine that we will begin to see the effects of this regimen on Sydney today. This afternoon she will receive a half hour infusion of Topotecan followed by another 6 hours of Cytoxin.
Sydney and Graham have awoken early so I must run. I will try and update later but right now I have a purpose.
(a little later)
I have grown tired of being sad or mad. It is becoming even more evident that they are absolutely worthless emotions to have. I am guessing that sometime early in Sydney's relapse the other Mark stepped out and took control and now I find myself in a state of confidence and comfort. I have given up thinking "What if?" and am focused intently on what I can control. Hope has restored the emptiness that filled my heart. My logic is probably a little skewed but here is how I view the world. I might have a month left with Sydney. I might have a year. Miracles may happen and, for some reason, I may even get my natural born life to spend with my precious angel. But, whatever time we may or may not have left, I am not going to waste it with sadness. That would not be fair to Sydney, Lynley, or Graham. Every day, every hour, every minute and second they will be bathed in my love. My job is happiness, consistency, and comfort. It is my job to make sure that for the rest of her days she is as comfortable and happy as she can possibly be. She must feel the happiness of true love. She needs to feel my confidence and she needs to feel secure that we have a plan and a clear direction. I believe the most important thing for Sydney is that she feels love and the joyful warmth that comes with it.
Don't be misled. I have not given up. I have accepted nothing. I know the research and I know the statistics, but the fact of the matter is that Sydney is not a statistic and so, to me, they are meaningless. I am still hoping for a cure (Yes, I said cure) Against all logic and research I still believe. It is possible. This fight is not over. Some may read this in disbelief. Some may think that I have gone off my rocker, but I do believe. If you looked into my eyes you would see it. You would believe too. I am not making uneducated guesses. I am not taking a stab in the dark. We have opportunity and we have life and we will take advantage of every moment. My purpose is stronger than this damn disease. Today, I am defiant.
7:34 AM 10/21/2004
Sydney appears to be tolerating this regimen of chemo with flying colors. I have been answering email and researching treatment options this morning and have not had a chance to get to my diary until now. I will update with more later but for the time being everything is a-ok. My purpose is in full gear.
6:06 AM 10/22/2004
Believe it or not, we are at home. Yesterday was a jam packed day and I never really got a chance to get back to my diary. I have mountains to write but I find myself subconsciously prioritizing spending time with Sydney above all else.
Sydney has tolerated this round of chemo superbly. She has clearly slowed down and we are starting to see the signs of the chemo taking their hold. She is starting to look pale and she has a look about her that says she is physically drained. This morning we will be going into the clinic at 9:30 AM to receive her last dose of Topotecan for this round. It will be a 30 minute infusion followed by some fluids.
Yesterday at noon we had our MIBG scans. At 11:30 we carried her down to the Radiology area to prepare her for sedation. The MIBG scan lasts about 45 minutes and unfortunately Sydney still does not have the gift to stay still that long. Secretly, we were hoping for a negative scan. We even prepared the anesthesiologist and radiology team to page Dr. Eames if a negative result was found. We wanted to be prepared to biopsy her tibia while she was still under sedation. Waiting in the room next store was a surreal experience. About 45 minutes later we were made aware of the fact that they were trying to contact Dr. Eames. At that moment we knew the scans were negative. I tried to suppress it but my mind would not listen. I was beginning to blatantly disregard Dr. Eames direction and I began to hope that this might not be neuroblastoma. For the next hour I walked around with a smile on my face even though I knew that if the scans were negative and she did, in fact, have neuroblastoma we had just lost a great diagnostic tool and a therapeutic option. Let me put the MIBG scan into perspective.
The MIBG scan is a scan that is specific to neuroblastoma. They inject a radioactive isotope into Sydney which slowly makes its way into her bones. Two days after the injection they view her bones using a bonescan. The MIBG then shows up on the scan where it has found signs of neuroblastoma. It is an excellent tool. If it lights up, your pretty much have neuroblastoma. If not however, you may or may not. Unfortunately, it is not fool proof. I am going to mess up this statistic but I think that about 85% of neuroblastoma tumors are what they call MIBG avid (in other words they light up with MIBG). The other 15% simply do not. Now, logic would tell you that if Sydney lit up originally using this test that she would continue to do so. Unfortunately that is not the case. You have to realize that Neuroblastoma is not just one type of cell and the common medical belief is that one tumor in one body can include several different breeds of neuroblastoma. Many of those breeds could be MIBG avid but others may not be. So, to make a long story short, Sydney could have neuroblastoma even though this test did not show any - even though it did before. Regardless, I was somehow happy that it did not.
We did not give Dr. Eames enough time to mobilize her team for the bone marrow aspirate and biopsy of her tibia while she was under sedation but once Dr. Eames got back up to the floor we discussed our options. At about 3:45 it was decided we would biopsy her tibia in the treatment room. At about 4:15 there were about seven of us standing in the treatment room as Dr. Eames performed her doctorial magic.
Sydney was given a bit of Versed and some Fentanyl to manage the pain. Unfortunately, it did not make her go to sleep. She would have no memory of the experience but she would remain awake throughout the biopsy. To calm her our nurse began to sing nursery rhymes. The next thing we knew the entire room erupted in awful renditions of the "Itsy Bitsy Spider", "Tomorrow", "The Alphabet Song", "Do re me fa so la ti do", and "The Wheels on the Bus", among others. It was loud, boisterous, and particularly bad. Even Sydney was moaning along although the sedation had made her fairly inaudible. There were moments of severe breakthrough pain for Sydney but all in all she did fairly well. I would even go as far as to say that she handled it much better than we sang. Within about ten minutes the procedure was completed. I have described this procedure before so I will spare you the pain of hearing it again.
After the procedure we were given our walking papers. Sydney had handled the chemo so well they decided to allow us to go home and complete the last dose on an outpatient basis. At about 6:45 PM we arrived home, eagerly anticipating a call from Dr. Eames. Even though I swore I would not allow myself to hope that it was not neuroblastoma I found my mind running into the "what ifs." The reason I did not want to hope was that I did not want to relive the pain of finding out that she had relapsed. I wanted to assume the worst and if I was wrong I could be sent into shock on the other end. At about 7:15PM Dr. Eames called. She had a chance to look at the aspirate under a microscope.
Sydney did not have sheets of tumor like was expected in her marrow. She had what was called a small clump of suspicious looking little blue round cells. There are other types of small, round, blue cells in the marrow but it is the clumping that signifies that something is truly amiss. Based on the evidence she was not able to conclude that it was neuroblastoma for sure but it is likely. Late this afternoon we are hoping to hear back on the bone biopsy. We believe this will be more conclusive and although we are praying that it is not neuroblastoma we would love to hear something conclusive. We would like some pathological proof. This is not to say that we do not trust the medical opinions of our doctors, after all, we began therapy on a their strong suspicions. We would just love to know that she could survive this. We pray so strongly that she could just grow up to be happy and healthy.
I still find myself in the familiar position of wanting to write more but it is not going to happen right now. When we find out the biopsy results I will post them but in the meantime I have some Daddying to do. I have a purpose.
6:30 AM 10/24/2004
The results of Sydney's bone marrow biopsy of her tibia are still pending. On Friday morning she received her final dose of chemo. It was a thirty minute infusion of Topotecan which took roughly four hours out of our day at the clinic. She also received some IV antibiotic and a slew of pre and post medication.
Sydney is now frail. It did not take long for the chemo to send her little body back into the cancer world. Her eyes now appear sunken and the color in her rosy cheeks has dissipated. We are relearning all of our own tricks and although we had only been out of the chemo world for what seemed like a short time we had forgotten quite a bit.
Sydney is adjusting well. She knows that she is sick but seems complacent. During the last two days of chemo she was completely wasted and lethargic outside of a few bursts of energy but, now, although the pace of her world has slowed down, she is starting to bounce back a little. She is not happy to be sick and is anxious to be better but is dealing with the changes extremely well. She knows that she is loved. She is surrounded by her family and seems to be happy even given her raw end of the deal. In that sense, I do not think that I could ask for more.
Yesterday, I started to write a letter to Dr. Eames. My research is now caught up with our current state of reality and I wanted to let her know our perspective, our position as a family, and most importantly our appreciation of her, her team, the nurses and staff and their kindness and love that they have shown our family. It seems that every time I wrote a word it did not really capture how I, or we, felt. It is a work in progress and I don't know if I will ever be able to complete it but I do want her to know how appreciative we are. I want her to know that along with praying every moment to spare Sydney's life and to allow her to grow up and be happy and healthy I also thank Him everyday for her presence in our lives. She is a gift.
You see, I still listen to parents that have children with NB talk. I know hundreds of families who have children who relapsed. The overwhelming consensus of these parents is that when they step back into this world they find that their oncologists have given up. They feel like the are alone and in many cases their hopes are dashed and the therapy, although aimed at producing a second remission, is not accompanied by much kindness. Many feel that their oncologists are distancing themselves which makes the families feel hopeless and alone. That has not been our experience. In fact, it has been much the opposite. Everyone has rolled up their sleeves and dove in. We all know the facts but we also know that miracles happen. We have no guarantees and we certainly don't have great odds. But, we are together, we are all working towards a common goal, and we all believe. I feel warm. I feel supported - loved -and in control. A large part of my ability to cope and that ability to put one foot in front of the other is the kindness of the medical group that surrounds us.
We have made some tough decisions regarding Sydney's relapse therapy. I have received many calls from parents to find out what we are doing. You see, in relapse land, their isn't a standard plan. There is no predefined roadmap of how to defeat this disease. Much of what we do and the directions we go are based on the expertise and the experience of our oncologists. It has been Sydney's oncologists that have led us in a direction that is somewhat different from the typical path. This vision shows me that they are doing their homework. It shows me that they have not given up. And, it shows that they care. Are they right? I don't know. We are being very aggressive. Our treatment plan could come at a short term loss of quality of life but could very well extend her long term quality of life. It could be the difference between winning and losing. Ultimately, I do not know if we are doing the right or wrong thing. I do not know if it will save Sydney's life, prolong it, or come at the cost of it but I do know that they and we are trying. They are taking steps that go beyond the standard of care and are doing everything they can to save our baby's life. It is that dedication and perseverance that touches our hearts, gives us hope, and the strength to go on and comfort, love, and share with Sydney. In this world it not only means a lot but it means everything. It seems our team shares our purpose.
5:00 AM 10/25/2004
As I mentioned yesterday, Sydney continues to improve. She was full of energy and was up to many of her old tricks yesterday. We found ourselves tired by the end of the day from chasing her around. She no longer depends on many of her comfort drugs. We are no longer administering Zophran, Vistaril, or Lortab unless needed. Her appetite appears to be rebounding although her weight is still down. People that are seeing her for the first time since "relapse" (yes, just over 1 short week) are amazed at the difference in her appearance. She has lost her normal luster and is now thin, frail, and pale. It is amazing how quickly her body has deteriorated. I guess that is a good sign. If it is doing that to the outside of her body I can only imagine what it is doing to those neuroblastoma cells.
This morning I am off to work. I doubt my mind will be functional until we here the news of her bone biopsy. Oh how I wish this could be something else but I have worked very hard to try and keep my hopes from getting up. I know the chances of it being something else are slim but I just can't help from imagining "what if?" The last two weeks have gone by so fast it seems like it was all just a nightmare that happened last night. I have to check myself several times a day to make sure that this is the world and the reality that I am living in. It is like I do not accept the fact. I am conscious of it. I am going through the motions. But, there is something in my mind that will not let me dwell on it. As soon as I have a negative thought it is quickly ushered out of my consciousness. It is strange and it seems like I am almost living in a dream state. It is if my body is building a wall to keep me from focusing on the bad and unfortunately our reality.
It is time to run. I will update as soon as I know anything. I am hoping we will find out about her bone biopsy this morning but one never knows for sure. I know the biopsy results are probably already set in stone but maybe, just maybe, if I pray real hard we will get the unexpected answer. Maybe our dreams will come true. Maybe we will get our miracle. Here is to hoping. Although it seems like a bad dream, I still have a purpose.
7:07 PM 10/25/2004
Negative? What do you mean negative? I don't know what to say. I will have to think more about this. Until tomorrow.
4:40 AM 10/26/2004
Humph! I feel - I feel - well - I feel weird and it is really getting much more difficult to keep my hopes from getting up. We received the news late yesterday evening. Dr. Eames called and after exchanging our normal pleasantries and discussing Sydney's current state of affairs she just popped it out. "Mark, Sydney's biopsy results were negative for NB." To say that it took the breath out of me would be an understatement. I was absolutely floored. We spent quite a lot of time on the phone which I know is going to be documented in the "Annals of Sydney" as yet another long discussion. Perhaps, I should explain. You see, every time we are in the hospital I covet Sydney's medical chart. At least twice per day you can find me with my nose buried in it. First, when I wake up in the morning the nurses always have a fresh copy of her lab results to pour through. At this point I have not woken up so I am still a little slow. I then take my labs over to the coffee pot where I become cranky if there is not an adult size coffee cup waiting for me (those nurses had gotten into the habit of placing the little child coffee cups next to the coffee maker in our absence.) Regardless, it is a fun game and I take my coffee, my labs, and myself outside for some fresh air while I wake up and soak in Sydney's labs. This gives me some time to figure out what is going on inside Sydney's body and helps me develop a plan for what I will need to research during the day. After my cup of coffee I make my way back up onto the floor where I am now prepared to talk about the state of Sydney. On slow mornings on the oncology floor I will ask the nurses about their assessments and, on good days, we will sit and talk about all that is neuroblastoma. Needless to say, they are really nice to put up with me. The second time I pour through the chart is after the doctor has visited Sydney and the doctor's notes have been posted. This is one of my favorite times. The great thing about the doctor's notes is you get a clear picture of everything that is going on with Sydney. We become so focused on single issues that we sometimes forget to look at the whole. The doctor's notes provide a full picture of what is going on with her entire system and usually includes an overall assessment. The problem with the doctor's notes last week is that they always ended in "I had a long discussion with Sydney's parents about..." It became a joke and by the time the end of the week was nearing I was clock watching our time with Dr. Eames to make sure we would not be characterized with another "long discussion." I certainly don't want to monopolize her time. I know she has many other kids to treat and see and some in far more dire consequences than Sydney. But, I do have questions. Lynley usually even makes a list. Regardless, we are learning to behave ourselves and trying not to monopolize anyone's time. So to make a long story short I looked at the caller time on the phone after last night's discussion and I know it will be categorized as "long."
So, what did we talk about? Well, I think the consensus of everyone is that we all feel weird. Everyone, and I mean everyone, was sure that we would find NB. We were all positive. The radiologists were positive. The oncologists were positive. In fact, everyone I talked to in the world of neuroblastoma including NB researchers, NB parents, doctors - you name it- were positive it was NB. Hey, even Lynley and I were sure. The facts are that we have a series of tests which all point to neuroblastoma, but, we still can not prove it and no one feels comfortable with moving forward with treatment until we can prove it definitively. So, we came up with another plan. Here is what we know. There is something wrong with Sydney's right tibia. Both the MRI and the bone scan showed an area of abnormality which has all of the characteristics of NB and of little else. Later an x-ray also showed some thickening of the bone which also supports the possibility of NB. The CT, MIBG, bilateral bone marrow biopsies and aspirates of the hips and, now, the bone biopsy and aspirate of the tibia are all negative or inconclusive. In short, there is something wrong in that area of the leg that looks and feels like neuroblastoma but we can't get pathological proof that it is cancer or anything else for that matter. We are still waiting on the full study of the aspirate from Sydney's tibia. The first glance of it under a microscope showed 4 or 5 small clusters of abnormal cells. But, from that, nobody was able to make the call that it was, in fact, neuroblastoma. The study of her aspirate, which was sent to Seeger's lab, will not be available for another week or two. If it is there, they will find it. But, all of this begs a question. What do we do in the meantime? Here is the plan. We are going to forge ahead with the stem cell collection. We only have one opportunity to collect these stem cells. She is mobilizing now and will be in prime position for the collection at the beginning of next week. If we tried to wait for an answer we would be too late and it is extremely unlikely that she would be viable for collection after the next round of chemotherapy. So, we must do it now. We must still be prepared for the fact that this could be NB and we have to take advantage of our opportunity. We are also going to get a second opinion of her MRI. It is not that we don't have confidence in our radiologist but all of a sudden we have entered into some pretty murky waters and another set of eyes could be invaluable. Next, we are going to repeat the scans that showed abnormality in about two weeks. Basically, we are going to continue to operate under the assumption that Sydney has relapsed / recurrent NB but are going to hold short of giving her another round of chemo until we can prove, beyond a shadow of doubt, that it is neuroblastoma that is in her tibia. In the meantime, we will basically just wait - hope, pray, love - and wait. It will be a couple of weeks before we know anymore.
So, in conclusion, I feel weird. I am extremely happy but tense. The overall odds of this being neuroblastoma are still very high but this is potentially very good news. Although I don't particularly care for the waiting it is far better than receiving a positive result. I feel lucky and unlucky. I feel like the weight of the world has been removed from my shoulders and then put back on. I feel relaxed and tense. Once again, I am the virtual ying yang. Luckily, my purpose is constant and has not budged from its mission.
5:15 AM 10/27/2004
Sydney is doing extremely well. She is clearly a quart low on blood but is pouncing around the house like - well, what would you expect - a kitty cat. She is active, playful, and twerpful. Yesterday, was the first time that I really had them alone, by myself, since this whole relapse thing began. Everyday since we got wind of the possibility that Sydney might have recurrent disease we have been surrounded by friends and family. So, in short, there were always people around to help watch Sydney and Graham - until yesterday. I had forgotten what it was like to be outnumbered by my little turkeys and they had me scrambling. You should know, Graham (aka Dudely, the Grahaminator, the Grahamster, el todo turkey) is now an official crawling machine and is under the belief that everything in the world is in his grasp and if it is not he will try anyway. I spent most of my afternoon herding him around the living room rug while at the same time chasing Sydney who wanted to play hide (in kitty fashion). It was actually quite funny and a needed break from our reality. I have two energy laden kids and although they choose to listen to me on occasion, they have great fun in torturing their father by running in opposite directions and creating mass chaos. Yesterday, I was definitely playing by their rules. I wouldn't exactly call it a chapter out of "Lord of the Flies" but they were definitely in control. They caught me out of practice. What a sucker I am.
Today marks the start of a busy couple of weeks with Sydney. This morning we will go in to check her CBC (blood counts) and her CD 34 count. We will continue to do this every morning until we collect her stem cells. The goal is to catch her at the point when her body is producing so many stem cells that they are pouring out of the marrow and into her blood stream. We also want to catch her on the day(s) when she has the most stem cells in her blood. Basically, we test her everyday until she looks like she is going to reach her peak. We are hoping that they will allow us to access her port so that we do not have to poke her everyday for the blood tests. By accessing her port we will be able to perform the blood draws at home and either Lynley or myself will be able to run the labs to the clinic on our way to work.
On Friday, Sydney will have her apheresis catheter placement. This is essentially another central line which is bigger in diameter and its sole purpose is for the stem cell collection. It will be removed after we have collected her stems cells. For those of you that remember July 29, 2003 this was not our favorite memory from treatment in the first go round. Sydney was heparinized (they flushed high dose heparin into this catheter) coming out of recovery and we spent about 8 hours trying to stop the bleeding. She developed pulmonary edema and it was not a pretty picture. This was one of the first times that we saw Dr. Eames go into action and I will never forget how self-assured, exact, and talented she was as she brought Sydney out of crisis. That was also one of the first times I truly realized that we were dealing with life and death. It is one thing to go through all of this chemo and treatment and to understand that this disease is life and death but it is quite another when it is right there in front of you. Needless to say, we will be writing "DO NOT FLUSH HIGH DOSE HEPARIN" in black ink all over Sydney before she enters surgery.
Well I am off. There are kids to bath, meds to administer, and a ton to accomplish before we hit the streets this morning. I had forgotten how busy my purpose can be.
4:47 AM 10/28/2004
This morning I am like a balloon under pressure. I pride myself on self control but I feel like I am on edge. The waiting and waiting is pushing me over the top. My mind is constantly running through the what ifs. I find myself living in two worlds. First, there is that part of me that is hoping. I am hoping so hard that I almost have myself convinced that this is not NB but something else. I am setting myself up for a potentially huge crash even though I know, intellectually, that the odds of this being something different are still extremely low. I am behaving like this is nothing, just another hiccup in the road to recovery. On the other hand, even though I am still trying to spend as much time as I possibly can with Sydney, I feel like it is not enough. I feel like I am not appreciating my time with her and upon reflection I can always think of things that I could have done with her that would have been more memorable. I keep having to force myself to remember what is at stake. I am scared but it is as if my mind won't let me express it because it is too busy hoping and assuming the best.
This morning I am particularly sensitive. Sydney did not sleep well last night. She has two complaints that have me scared out of my wits. First, yesterday afternoon she started to complain about the "owie" on her leg. To be honest, I was expecting leg pain. I was expecting her to complain about bone pain from the GCSF. The problem is that I was expecting pain in her thighs and not in her tibia and, unfortunately, that is where she is saying the pain is coming from. It almost makes me sick just thinking about it. When I first heard her complain of the pain it bothered me but I was quick to ask her a barrage of questions to try and ascertain its cause. After a somewhat thorough interrogation I concluded that her tibia hurt because she "bonked" it on the leg of the couch or so she led me to believe. She would continue to complain about her leg 4 or 5 more times throughout the day. Now, could she have "bonked" it? Sure, she could have. Could it also be more sensitive because of the bone marrow biopsy wounds? Sure. Could it be that she didn't really "bonk" it on the couch? Could it be that it just started happening yesterday and she only noticed it as her leg rubbed on the edge of the couch? Could it be from disease progression? Yes. Yes, yes, yes, yes, yes, yes and yes! It could be anything. It could be something or nothing but it scares the snot out of me. Next, she is complaining that her hiney is itchy. I don't really know what to make of this. Once again, I can think of a thousand possibilities which always start out benign and then gravitate towards neuroblastoma. Yes, it could be the beginnings of a diaper rash. It could be a yeast infection or a plethora of other minor skin infections. It could be almost anything. But, right now, I can also find as many reasons that it could be neuroblastoma. I hate this. I don't trust this damn disease and because of it I am not in control. I am edgy, irrational, and slightly psychotic. I need to look to my purpose for strength and direction.
5:58 AM 10/29/2004
This is going to be a very quick update. Not that it has any bearing on this entry but I would like to point out that I am far less mental than I was yesterday. This morning we are heading to the clinic. The surgery for her apheresis catheter placement has been postponed until Monday. This decision was due in part to her counts and also to the fact that they wanted to give her the opportunity to have a noodleless weekend. On another note, we have come to the conclusion that Sydney has a yeast infection. I am by no means an expert on girly parts so I have deferred to Lynley on this one. Sydney has been quite uncomfortable and she even slept with us last night. We are hoping that the doctors will prescribe something for her this morning that will give her some relief. As it stands now, the only way she seems to get some relief is - well- how should I put this- by humping the arm of the couch. Yes, I know it sounds crass, but, that is the best way to explain it. Every few minutes she will complain of the itchiness and burning and then hop up onto the arm of the couch and move her tushy back and forth on it. It seems to give her great relief and, for Lynley and I, a little comic relief. Her tibia pain seems to have subsided and has been replaced by pain in her thighs. Now, that is a fairly typically reaction for her on the GCSF. Her appetite is down and her weight continues to fall off. Other than those items she seems to be in high spirits. And me, well, I regained my perspective. I have a purpose. We are off to the clinic.
Sydney woke up with a 102.3 degree fever. We are heading to the ER.
5:30 AM 10/30/2004
We are back at wonderful Cook's. Sydney's temperature continues to bounce back and forth from normal to febrile every couple of hours. She spent her day in the bed in our room on 3 north and was generally uncomfortable for much of the day. Finally, late in the afternoon, she finally started to get some relief from the constant barrage of itchiness and burning which we continue to believe is from a yeast infection. Currently, she is on the "fever regimen" which includes a barrage of antibiotics. She has received some rocefin, vanc, fluconozol (sp?) and yet another which slips my mind at the moment. She also received a half unit of platelets and I am expecting a blood transfusion this morning as her hematocrit and RBC counts have fallen off substantially. I am expecting and hoping that the fevers are from her chemo nadir and not from some type of infection. She seemed to rest comfortably throughout the night. I on the other hand did not. I slept with Sydney and have discovered that I am a left bed sleeper. With the configuration of Sydney's IV's I was left no option but to sleep on the right side of the bed. I spent much of the night awake, tossing, and turning. I will need a new game plan tonight.
Yesterday morning we spent a significant amount of time with Dr. Eames. She met us down in the ER upon our admission. Although a portion of our discussion centered around her current condition, the majority of time was spent discussing our plan and the possibility that we may never be able to pinpoint what is going on in Sydney's leg. I think we are all beginning to loose confidence that we will be able to prove, beyond a shadow of a doubt, that this is neuroblastoma. It will be at least another week before we receive the pathology studies. At this point we are running out of options and things to test. Although I am quite pleased that we are unable to detect neuroblastoma it opens up an entirely new can of worms. We are all trying to digest the question: :"What are we going to do if we can't prove that this is neuroblastoma?" We can't continue to treat and yet we can't figure out what it is. We must remember that there is something wrong inside her leg. Hmmmmm. Conundrum.
I might have unanswered questions but my purpose does not.
5:40 AM 11/1/2004
Good morning from Cook's. Sydney has improved greatly from Friday but her white count continues to wallow in smallishness. At this rate I am thinking that we should get out of the hospital sometime just shy of her eighteenth birthday. Sydney has recovered from her febrile state and we have not seen hide nor hair of a fever since the wee hours of Saturday morning. Unfortunately, until her WBC count recovers and we start to see an ANC I doubt that they will let us go home. The surgery that had been originally rescheduled for this morning has been moved again and for now we will just wait until Sydney's little cells start to do their job. I am out of practice but perhaps it is time to do another stem cell dance.
Yesterday we really started to see Sydney come out of her shell once again. She is now in that stage were much of her body has recovered and she is just plain bored. There is not a lot that she can do inside of her little room on 3 north and she never really gets the opportunity to release her energy. That turns into a situation in which she does not want to take a nap which further escalates into advanced twerpdom, a serious condition that often comes at the cost of parents pulling out their hair. Speaking of hair. Yesterday, after watching clumps of hair accumulate on her pillow and a bald spot appear on the back of Sydney's head we decided to shave the rest of it off. She is now back to being our beautiful bald baby girl. This time I am incredibly familiar with the look and in many ways she looks more natural to me this way than with her quaff. I am actually pretty comfortable with the whole hairlessness thing. As far back as I can remember the only times that she had neuroblastoma were when she had hair. Given that, I will just assume that since she has no hair she must , therefore, no longer have neuroblastoma. Hey, whatever works.
Sydney is really handling all of this pretty well. She is far more aware of the procedures but still fails to grasp the fact that she is different from any other child. Overall she is happy, loved and, for the most part, comfortable. Yesterday, we truly saw signs that our Sydney was coming back. When we came into the hospital on Friday Sydney was in some significant pain from the yeast infection. What started out as some cute tushy wiggling on the couch arm quickly turned into some major burning and irritation. She spent much of her first few days in the bed and rarely moved due to the discomfort.
I am starting to question our relapse diagnosis. I am sure that it is a fairly knee jerk reaction that a parent in our situation would have but every time we receive another negative test result the hope increases that this could be something else. My current guess is that although we have been told that this is not osteomyelitis (bone infection) it appears (to me) that it is consistent with every single finding. It is consistent with the x-ray, the increased uptake on the bone scan, the T1 weighted darkening and T2/STIR brightening found on the MRI, and, if rumor has it correctly, it could even be consistent with the 5 to 6 small clusters of little blue cells found in the marrow of her tibia. I know, I know, this is in blatant disregard to Dr. Eames instructions to not allow my hopes to get up but, hey, I am a parent and that is specifically what I do. Furthermore, with the sluggishness of her marrow to recover from this bout of chemotherapy it becomes increasingly important to me that this be something else.
Today we will be seeing Dr. Howery (aka Dr. Handsome). I will begin my plea to rule osteomyelitis in or out. Get ready, I have a purpose.
5:20 AM 11/2/2004
Sydney has had her surgery rescheduled for this morning. Assuming things go off on time I am guestimating that Sydney's surgery will transpire at about 11:00 AM. Lynley is not the least bit happy about the surgery today. It is her belief that Sydney is no where near ready to mobilize and she is wondering why we need to put the apheresis catheter in now as opposed to later. I understand her point of view. She is extremely protective of Sydney's comfort and quality of life and she does not want Sydney to spend one moment in what she believes is unnecessary comfort.
Now, this is where the subject becomes somewhat taboo but I think it is important to mention because parents in this situation do not always agree. In this case, Lynley and I do not necessarily agree. I see her point and I understand where she is coming from (after all, we have already rescheduled twice) but I also understand the perspective of Sydney's doctors. This situation is not black and white. There is no right or wrong answer. Sydney's oncologists do not want to miss the opportunity to collect Sydney's stem cells. There is no way of predicting how quickly Sydney will start to mobilize. Once her little cells really start growing she could be ready for collection in hours or days. There is no definitive way to predict how quickly it will occur. All we know for sure is that every minute that goes by is one more minute closer to the time that she will be ready.
I am of the medical mindset. I believe in what the doctor's are saying. If they do not feel comfortable waiting any longer for the catheter placement then I personally accept that. For me, that outweighs the risk of Sydney being uncomfortable for a few days if need be because otherwise we risk getting a good collection. To me, the long term benefit (the collection of the cells) is more important than her immediate discomfort. For Lynley that is not the case. She believes that Sydney's comfort today is more important than the collection of stem cells that we may or may not even use. She believes that there is no reason to put in the catheter until it is absolutely needed. She is also bothered by the increased risk that we will have once the catheter is in. For every extra hour that it is in place Sydney is susceptible to being heparinized again. So, as you can see, there is no right answer. There just is.
The trick is for Lynley and I to come to terms with our differing opinions. Unfortunately, with me supporting the doctor's opinion of catheter placement today she feels unsupported and that she does not have a say. That is something as a husband that I need to deal with. That is my responsibility to bridge the gap but, for better or worse, I do not have the answer. I don't know what to say. I just know to be there. I know to say that she has good points and that she is also right. The problem is that I don't feel comfortable waiting either. In the end, we will probably all find out that Lynley was right. We will see that we could've waited longer. Maybe there is something to "Mommy knows best." Unfortunately, we simply do not have the benefit of hindsight.
Truth be known, I just want Lynley to be happy. I want Sydney to be comfortable and Lynley to feel supported. I love them both deeply and I just want everything to be all right. I don't have the answer but fortunately they are my purpose.
5:10 AM 11/3/2004
Believe it or not Sydney's apheresis catheter placement was moved until Thursday. I think that this has made everyone quite happy. With the sluggishness of Sydney's white count this will buy her a few more days of comfort while we wait for the little cells to do their thing. I wish I could tell you that we saw a huge spike in her labs this morning but unfortunately, for some reason, they were not ordered. So, like the election, it will likely be a while longer before we see any more results. Speaking of the election, I never got the chance to vote. But I did not shirk my civic duty. I convinced someone else here on the floor to not "rock the vote". Since she was going to vote for the other candidate our votes effectively cancelled each other's out. So my vote counts even if it doesn't really. Regardless, I now feel that I did not shirk my duty even given our circumstances. The beauty of this system is that there aren't any hanging chads or ballots to recount.
Sydney seems to be improving everyday. She is fairly active and alert. Yesterday she began to complain that her hiney was itching again so we may again see another flair up of her yeast infection. She continues to receive a slew of antibiotics so I am just hoping that we can start to see her white count start to soar once again as that might bring her some relief. So far she has received three transfusions (2 platelets and 1 whole blood). One of the things that has me a little concerned is a bruise that developed on her right ankle. It could be the result of some very minor trauma and the fact that she was low on platelets but it is one of those coincidences that also sends a shock down your spine and begins to turn your stomach. Could this be disease? Is it spreading?
A couple of days ago I tried to corner Dr. Howery and Candy about the possibility of this being osteomyelitus or something other than NB. I asked some very specific questions and got some very specific answers. First, I asked, "Based on what we know, why is this not osteomyelitus?" His answer was that the "infiltrative process" found on the MRI was not consistent with anything else but NB. Of course, of all the things I researched in trying to become a junior MRI expert, the terms infiltrative process were not in my language. I was ready for discussions on the darkening and brightening but not that specific term. Drats, the darn doctor had befuddled me. I would have to regroup. The second question I asked was based on the 5 or 6 small clusters found in the bone marrow aspirates which were found to be inconclusive. I knew Dr. Howery had looked at them so I wanted to get his personal opinion. I had received some second hand information that said that the small round blue cells could be infection so I wanted to expand on this topic. Dr. Howery was very clear. The cells were extremely abnormal and he felt confident that the pathology of that aspirate would be conclusive. He was sure we would get our answer and seemed even more confident that it would be NB. Just for your information the official MRI opinion reads:
"Findings are most consistent with infiltrative metastatic disease involving the right tibial shaft (distally greater than proximally). Ill defined T1 weighted darkening and T2/STIR weighted brightening of marrow signal is observed in the diaphysis of the tibia distally to a greater degree than proximally. No cortical fracture line or cortical destruction is seen, and no definite periosteal reaction or edema is appreciated. I strongly doubt that this just represents a diffuse stress response. The muscles are unremarkable...."
Drats, another naysayer. I really appreciated his opinion but it once again welled up the emotions inside of me. I have spent so much time trying to disprove the positive findings that I had become fairly closed minded. I was forgetting, or not accepting, that this still was most likely neuroblastoma. If, in fact, it is, I will undoubtedly crash hard but for the time being the research and the hope is continuing to fuel my soul. It gives me comfort and, even though I know on some rational level that the odds are slim, my mind will not let me keep from fighting and hoping. It will still be at least a week before we have any conclusive pathology. Until then, I will continue to search for another answer. I will continue to hope and pray. It is what I do. This is my purpose.
7:28 AM 11/4/2004
About the best thing that can be said about last night was that it was miserable for Sydney. She is and has been clearly uncomfortable. The moaning and crying has been a constant fixture. We just can't make her comfortable. It is more important to care for her right now. I will have to write later. Her surgery is scheduled for 2 PM.
7:00 AM 11/5/2004
The last few days have left little time to write in my diary. In that time we have had two fairly major occurrences. First, we had a discussion with Dr. Richie-Gillespie (the oncologist/orthopedic surgeon) and, secondly, we finally had Sydney's surgery. During this time Sydney has continued to be in pain and until late last night emitted a steady constant whimper. She is now on Fentanyl for the pain and it appears to be giving her some temporary relief. Her counts continue to remain low which has me a bit scared. We still have not received any pathology back and the odds remain in favor of neuroblastoma but with the sluggishness of her marrow to recover it is increasingly important that this be something other than this stupid disease. I am hoping and praying hard. I never get more than about 10 minutes in front of my computer at a time so I will try to accomplish this lengthy update with several smaller entries today. My purpose is keeping me busy.
STATE OF SYDNEY
8:00 AM 11/6/2004
Sydney is continuing to deteriorate. The fact of the matter is that with no white count her body has no ability to fight infection. Her yeast infection continues to just get worse and worse. She is now on a continuous Fentanyl drip to manage the pain. We have also started a slew of new antibiotics and antifungals to help aid her body in keeping these issues at bay. One of her least favorites is a suppository, which in all of this fairly bad news is actually a funny highlight. Two days ago we were discussing her yeast infection with our favorite pharmacist, Prak. We were discussing the advantages of having Sydney eat yogurt to help curb the infection and perhaps assist in speeding her recovery. After a thorough medical discussion he explained that it would be of little use in this particular case and although it might be helpful it did not translate into a cure. Of course, I immediately hit the research as Lynley continued to talk to him outside the door. Within minutes I had produced two published studies on the efficacy of eating yogurt with live cultures to curb yeast infections. Of course, results were seen over months and not days. It certainly would not meet our timeline. He was right but I did not relinquish. For grins we also discussed the efficacy of sitting in yogurt amidst several other alternative delivery methods. After humoring us with insightful debate (don't get me wrong, we love the Prakster) he changed the subject in a more useful direction. The next thing I knew we were talking about suppositories. Now, after all I am SuperDad, so I was prepared to intercede. I knew that HO patients were not allowed to have suppositories. Of course, being a man, I automatically assumed we were talking about a tushy suppository. Oncology patients are not allowed to have them because of the risk of tearing and infection. All of a sudden, just as soon as the words left my mouth, I realized that they were not talking about a tushy suppository, they were talking about a "girlie part" suppository. The look of shock and revelation on my face must have been overly animated because the whole room immediately erupted in laughter as it slowly sunk in to my thick man-skull. I tried to change the subject but it was to no avail. For the remainder of the day I would be taunted from everyone on the floor about suppositories. It was great fun for everyone and the rumor of my horror has been passed from floor to floor and day to day. The good thing to come out of my little "life lesson" was the formal formation of team "girlie part," an action oriented and almost militant group of mostly pregnant nurses, doctors, and lay people dedicated to ridding my sweet little girl's "girlie part owie." Before the ink had even dried on the written bylaws of team "girlie part" we had already seen a slew of new medications introduced and delivery methods instituted aimed at eradicating the insidious "girlie part owie." Go team girlie part. Although I am a member of team girlie part, it will not shock you to know that I am rarely conferred with on treatment options but, I am happy to say, I am a card carrying supporter.
8:45 AM 11/6/2004
Okay, we have established that Sydney has a raging yeast infection and no white count. What else is going on? Well, as part of her new regimen of drugs we have introduced Ampho, a particularly hard drug to tolerate. Last night at about 1 AM she received her first dose ever and it did not take to her too kindly. Her temperature shot up to 39.1 C and she started chilling. Every muscle in her little body was twitching and shaking. We immediately stopped the infusion. A call was made to Dr. Eames and soon thereafter we were administering hydrocortisone and Demerol. Demerol, by the way, was also a new drug to Sydney. Thankfully, Sydney responded to the care and within thirty minutes she had calmed back down and the fever subsided. The rest of the Ampho was delivered without incident. The only other thing that we would hear from Sydney for the rest of the night was a small hallucination about Cookie Monster. In fact, at 8:30 this morning she continues to rest peacefully which is quite unusual for her. My baby had a rough night.
The other thing of concern is Sydney's appetite. She continues to eat but the portions are miniscule and we are usually put in position to barter for every bite. She does not want to eat. We are working on some other alternatives but for the time being she is simply wasting away. We continue to force feed her Boost Breeze energy drink through a syringe but it is becoming clear to me that IV nutrition should become a reality. That will be one of our top discussion points with Dr. Granger today.
Let's see, what else? Well, there is good news. Sydney's blood cultures continue to come back with no signs of infection. We are treating her aggressively and although she has moments of discomfort we feel pretty lucky. We are in a race to maintain her health while we wait for her white count to rise. But, she is still healthy. She is still on the floor and she is not critical. We just need for those cells to come in. So, here me now little stem cells. I am doing my job. I am keeping her healthy so that you can do your job but, it is time. It is time for you to step up to the plate and bring Sydney back to health. We are no longer playing games. This game of hide and seek is over. Gut up and do your job. It depends on you. We have a purpose.
OUR MEETING WITH THE ORTHO/ONCOLOGIST
Okay, with Sydney sleeping I finally have time to get back to this. We met with Dr. Richie-Gillespie to discuss the possibility of performing an open biopsy on Sydney's tibia should we receive an inconclusive or negative results from Dr. Seeger's lab (yes, as of today we still do not have results) The great thing about our meeting is that we finally got to see Sydney's scans first hand - or eye rather. The bone scan shows a small spot in the center of her right tibia. If I had to guestimate I would say that the spot was about the size of a pencil eraser if you were looking at the scans in life size. So, when I say small, I mean very small. There are two views of her tibia on the scan. The first view is from the top and the second is from the side of her leg. This is important because the spot shows up in the middle of her tibia on both views which would indicate to me that we are actually seeing abnormality within the marrow instead of on the bone. This would support our negative result on the biopsy of the bone. As we learned from the doctor, the tibia is also made of bone which is quite different from the bones of the hips and because of this difference it is far more difficult to get a biopsy showing disease. This would also support our inconclusive results. Before I go on I would like to point out that the rest of the bone scan was clean.
The MRI, for me, was far more difficult to read especially considering the fact that I had never read one other than through research on the web. Once I got past the initial confusion of reading T1 weighted images (abnormal areas in the marrow are dark) versus T2/STIR weighted images (abnormal areas in the marrow look like a light is being shown on them) it became clear of what we were dealing with. From just above the midpoint of her tibia down to near the bottom we can see an abnormal haziness to the marrow. It looks cloudy. Now, this is kind of cool. Inside the marrow, actual marrow - stem cells, blood cells, etc. have a certain consistency. Disease, inflammation, and infection have a different consistency which actually more closely resembles fat. (Yeah, I think I got that right, if not please correct me. Regardless, either marrow or disease looks like fat and the other does not). The point is they are different and resonate differently in the MRI images.
It is 9:47 AM. Sydney has awoken and I will have to get back to this later....
Back to MRIs. The point is that there is clearly something abnormal in the marrow but there are no signs on the bone or in the soft tissues surrounding the area. All of the doctors have said that this looks like cancer because of the infiltrative process. Other possibilities could be something as benign as a stress fracture, some type of marrow infection, or, as a long shot, osteomyelitis. Based on doctor accounts it looks more like cancer than anything else but I am still hoping.
Now, on to the usefulness of an open biopsy. Dr. Richie-Gillespie was not particularly excited about the opportunity to biopsy Sydney's leg. She is concerned that since we have already had a round of chemotherapy the likelihood of discovering a positive result is low. Her concern would be that her opinion would likely produce a false negative result. In other words, that she would not discover any disease when some was actually there. She thinks that based on this information we would not continue therapy. My point was that unless she could prove pathologically that disease was there we were already forced into a false negative. If Sydney's pathology report comes back with no evidence of disease no one will feel comfortable going forward with therapy anyway. So my concern is not a false negative. I really don't care. What I do care about is that the procedure would be unlikely to produce accurate results and if that is, in fact, the case why would we subject her to the procedure given the fairly significant risks (breakage, infection, etc.). My other non-proven and probably irrational fear is of making them (the neuroblastoma cells, if they are there) mad. I have no documented proof but I believe that these cells have the habit of becoming mad. Right now, we have the possibility of a somewhat contained and localized disease that appears to be trapped inside the bone. (I know that is not necessarily the case) If we open up that bone and expose its contents to the rest of the body it could have the ability to spread more rapidly. In effect we would be opening the door so to speak. I know that is probably not the case but it is still a fear and until it is proven otherwise I am not willing to just go in willy nilly. So, as it stands now, both my rational and irrational mind are not real excited about the idea. Perhaps my perspective will change but, for now, it is not in our future plans.
7:40 AM 11/7/2004
Yesterday was probably one of the worst Sydney has ever endured since the beginning. When I say beginning, I mean June 21, 2003. Sydney's girlie part has deteriorated to the point that it has developed ulcers on the inside and to say the pain was extreme would be an understatement. A lot of words have been passed around as we have discussed the problems with Sydney's girlie part, all of which are bad. Some have been deadly bacterial infections such as psuedomonas and others have been serious conditions requiring surgery such as a fistula. For me, it was bad. I knew what all of these things meant and it was not good. Dr. Granger, who showed a look of surprise on her face when we said it looked better than the day before, was as bothered by Sydney's current state as we were. At noon, she ordered a consult with an infectious disease doctor and an ultrasound. I think the ultrasound was to look for the development of a fistula. Luckily, though, nothing could be found. This was great news. I would describe the girlie part owie but I think I will spare my daughters dignity. For the sake of argument lets just say it looks bad and incredibly painful.
I felt much better after we met with the infectious disease doctor. She felt confident that we had excellent antibiotic coverage and that we were moving in the right direction. She did warn us, however, that it would get worse before it got better. We will see her again today.
So, aside from the tremendous amount of pain, what was so bad about yesterday? Poor Sydney! Poor, poor Sydney!! She was whacked out. I am not being funny. She was seriously whacked out. I think it was due to the Fentanyl. To be honest, I think we just bolused her too much in trying to control an uncontrollable pain. She was absolutely out of her gourd and completely inconsolable. She was to the point that we could not even communicate with her. She was angry and violent and the look in her eyes let us know that no one that we knew was home. There was simply nothing that we could do. She would stay in this medicated funk for nearly six hours and it would be late in the evening before we saw any glimpses of our Sydney. It was stressful and both Lynley and I were digging deep to figure out how to turn the tide. We tried anything and everything to get through to her but it was to no avail. In the end, we were forced to just manage her outbursts and stay vigilant to protect her from herself. It was not something that I would ever like to repeat. In the end, I asked them to reduce her Fentanyl bolus dose. Hopefully this will continue to allow us to maintain some partial pain coverage without sending her into psycho-land.
Both Lynley and I are okay. We are both extremely tired and can be irritable at times. We are still operating as a team and are understanding of each others occasional weaknesses. We are in incredibly high stress but I think we are handling it together as well as can possibly be done under the circumstances. We both know that we will continue to have a couple of rough days ahead but I am confident that we will prevail as a team. We are incredibly good for each other. I am so thankful that she is the one by my side. I am a lucky, lucky man.
By the way, Sydney's white count hopped up to .2 today. We are moving in the right direction. Thanks for the help stem cells but we are not finished yet. We have a couple of tough days ahead. We can do it together. We have a purpose.
6:40 AM 11/8/04
Good Morning!! Sydney's WBC count is up to .5 today!! Yesterday was a better day but we are still far from having Sydney's pain completely controlled. It is getting better though. Yesterday we had another incident with the Ampho which required another dose of Demerol but it was far less severe. We are starting to see signs of our kitty returning. I on the other hand am grossed out. I failed to mention that Sydney was put on IV nutrition at night. Well, there you have it. She is. Unfortunately, this requires frequent nightly diaper changes (about every hour or so). Last night she also had some diarrhea and unfortunately some of it leaked out. Luckily, none of it got on Sydney. Unfortunately, I ended up sleeping in it for a couple of hours. I am smelly and substantially grossed out. I am counting the seconds until they are up and I can take a shower. So, from a very smelly Daddy with a purpose, I will be in touch later.
5:24 AM 11/9/2004
Sweet rest and relaxation. Everybody had a good night. I only recall hearing Sydney wake up twice and she was easily calmed. And the Grahamster, well, he did pretty well too. All in all, it was a great night of rest and we were all in desperate need of it. Sydney's white count jumped to a whopping 1.4. That is a huge leap although her neutrophil count is still a little low. I am guessing that we are probably not quite ready for the stem cell collection. But we are closer and we can finally see it on the horizon.
Yesterday Sydney had a better day. She is still not walking and getting her to change position is a struggle. We are doing our best to get her up and around. The more she moves the more quickly she will recover.
Her "girlie part" continues to improve dramatically. The swelling has gone down considerably. It is still red with a purple tinge and the skin has started peeling on the outside. It still hurts quite a bit when she urinates but the episodes appear to be far less severe. Yesterday, we reduced her Fentanyl dose significantly. After playing with the dosing for several days we finally came to the conclusion that this just isn't the type of pain that can be controlled with this narcotic. Since this reduction we have found her to be substantially more comfortable.
I haven't talked a lot about it but Sydney has really had a tough time coping throughout this last week. On many occasions I had worried that I wasn't doing a sufficient job at Daddying. One of the hardest things about this journey for me is my inability to comfort her when she seems to need it most. It isn't that I am not there and it isn't that I am not trying. It is this narcotic funk that we have used to try and control her pain that is the culprit. But, none the less, it hurts when we can not bring her peace. I know she must feel alone and angry but no matter what Lynley and I do to try and comfort her she will not have any of it. She wants to be left alone and spends much of her day glued to a "Tom and Jerry" video that plays over and over again. I just want to hold her. I want to take her pain away. I want her to feel loved and I want her to know that we are here. Once again, I know she knows, but the narcotics just won't let us get through. The good news is that the dose reduction has let us back into her world. I would not yet call her my sweet little baby girl but I am seeing glimpses. I am hoping that today we will get through to her. I just want to hold her. I know I can't fix it but I just want her to feel tremendously loved and, especially, not alone.
I had to reread my diary to remember that this would get better. I went back to our first hospital stay and relived the first few weeks after diagnosis. It was good to see that although she was never sure of what she wanted, when it was all said and done, she felt tremendously loved. She became my baby girl again.
I feel like a hawk. I sit over her attentively. I am usually not allowed to look at her and when she is really feeling the effects of the drugs we are not even allowed to watch the television. I am just waiting for the moment to get through. I just want to make her better. Nobody ever said my purpose was going to be easy.
6:00 AM 11/10/04
Oh what a beautiful day. Sydney is on the mend and she is returning to my sweet, beautiful, twerpful, little, kitty cat. I spent much of yesterday morning alone with her. Lynley had to work to keep up our insurance and Graham went off to spend the morning with Martha. That left me and the twerp to reek havoc. We did not do anything too extravagant. She is still unable to walk without intense pain but is now able to do things in the room. Her narcotic funk has left the building and, best of all, she wants to spend time with her Daddy, Mommy, and baby brother. I can not explain how good it is to have her back. I just don't think the English language has developed the words that even come close to explaining my sense of joy and relief. There is a saying, "You do not know what you have until it is gone." and it could not be more true. Ever since October 13th when we were delivered the awful news we have been running aggressively. There has not been a moment to really reflect. It seems like the next thing we knew we had a baby girl that was not our baby girl anymore. But she is back, she is back to singing nonsense songs for no particular reason and I can not tell you how good it feels to hear her singing and meowing.
Her white count has taken a major jump today. She is up to 5.0. That is huge and considering 5.5 is the bottom end of the normal range we could not be happier. Her CD34 count for this morning is still pending but yesterday it was 2. We need a 10 to start the collection. So, in short, we are getting closer. Getting closer to stem cell collection, getting closer to having a pain free baby girl and closer to getting the answers we so desperately need. Maybe today we will get some answers back on her bone marrow. I have some extremely high hopes. Keep praying, we have a purpose. Gotta run, my rugrats have awoken.
5:47 AM 11/11/04
Go little stem cells. At about noon yesterday we found out officially that Sydney had achieved a CD34 count of 11 which meant we were ready for our stem cell collection. For good measure she was given a half unit of platelets (the apheresis machine chews up platelets) and then in the early afternoon she was hooked up to the machine. As is Dungan style, we could not do anything without a little drama. It turns out one of Sydney's new apheresis lines was clogged up. As a temporary measure we performed our second bandage change of the day and inserted a larger needle into her port so that we could begin the collection. In the meantime they loaded some TPA (the equivalent of liquid draino for clogged apheresis lines) into her red lumen to see if we could get it cleared up. Within about an hour the clog was clear and we re-noodle-ified her and continued with the collection. The next three hours would go off without incident. During the collection we watched her calcium levels and blood pressure for signs of distress but Sydney made it through with flying colors. The only negative was that she put on about 3 and a half pounds of fluids during the procedure. A dose of Lasix would have her peeing the rest of the night and as of about 3 o'clock this morning she appeared to be back to normal.
We will not know how effective the collection was until late this afternoon so we will be collecting her again this morning just for good measure. If all goes well she could have the apheresis catheter removed this afternoon and we could be sent home.
The "girlie part" team was done an excellent job of returning Sydney back to health. Yesterday she spent much of the morning walking and running around in the playroom. This was the first time we had seen her walk in almost a week. She would complain of pain a few times throughout the day but the duration and intensity was far less. Yes, our baby girl is back to normal.
Today will be an extremely busy day but we are hoping that we will get the opportunity to sit down with Dr. Eames to discuss the BMA results. We don't know for sure that they have been finalized but we do know that she is making a call to get some preliminary results. We may just get an answer. So, if you have any empty lines in your prayer list today we would love it if you could work Sydney into your schedule. It might just make the difference that we have all been waiting for. Today could be the day and today we all have a purpose.
5:30 AM 11/12/2004
Today finds me at the office early in the morning. Sydney, Graham, Lynley and I were discharged late yesterday afternoon and made it to the sweet comfort of our home. Sydney was not the least bit excited about coming home and would've preferred to stay with all of her "friends." - that ought to tell you something about how special the people at Cook's are. Either way, we are home and safe.
Unfortunately, I have some bad news to share. We received Sydney's BMA results. The tibia was clear but they did find something in her hips - yep, the place we were not even concerned about. It took a long time to get the results because of all of the additional testing that was done. By morphology the hips were found to be negative but by immunocytology (the second test) they found 27 cells in about two million (the margin of error is five cells). So, Sydney has officially relapsed. She is early, the disease is small but, none the less, Sydney has relapsed. I only wish I could tell you another story.
Lynley and I are appropriately disappointed but we are committed to making this family as happy as we can in what we know will be a grueling 6 months plus. We have to work on balancing work, hospital life, and most importantly our two great little kiddos. We don't have any answers and we don't know how we will do it but we will. We will do it together.
We have a week off before we begin the next round of chemo. Next time I write I will fill in all of the details, share our plan, and figure out where we go from here. But for right now, I have some work that has to be done and, to be honest, I would just like to hide in my shell. I have not, however, forgot my purpose.
5:12 AM 11/15/2004
Another Monday. Wow, time flies when you are living in oblivion. I still can't believe it - 27 freaking cells - and they weren't found in the tibia. That just amazes me. I guess if it was going to be neuroblastoma we knew it would not just be localized to one place. But, boy, wouldn't that have been nice. Well, enough pity party. So, how's Sydney? What does our future hold?
Sydney is doing superbly. She is at home. She is happy and she is bald. I think it is a pretty nice mixture. After all, every time she has had hair she has had cancer so the hairless look has really started to grow on me. On Friday afternoon Lynley and I took Sydney to see the Incredibles. Believe it or not, that movie really helped me regain my perspective. Other than being a great movie that I think both adults and children will enjoy one of the best parts about it is the Pixar short movie that plays right before the real thing. For those of you that haven't seen it, this story is about a small sheep that lives out on some barren ranch land. He is a beautiful sheep with thick locks of wool and he entertains all of the animals that live around him with his beautiful dancing. Then one day the rancher comes and sheers him. He is left piddly and pink and now when he dances all of the animals around him just laugh. This depresses the poor little sheep and he stays in this frame of mind until another day when a jackalope crosses his path. Now, here is where I got a little confused watching the short movie because I kept glancing over at Sydney's little bald head drawing comparisons and I wasn't paying enough attention but, basically, the jackalope taught the sheep to pounce around and just have fun. He could still entertain all of his animal friends and still find joy - he was just doing it in another way. The jackalope mixed it up a little, so to speak. Anyway, every year the sheep would eventually grow back a thick layer of wool and the rancher would, sure enough, come by and sheer him again but the sheep would just take it in stride and pounce along in his own merry way.
I could not stop drawing parallels between my family and this little sheep. Aside from the fact that it seems eerily familiar to have a bald child sitting next to me that just got "sheered" from the chemo, I could draw some really important "life skills" from this little movie short. In essence this is exactly what happened to Sydney and our family. One day we got sheered. We felt sorry for ourselves, we got depressed, but we learned to live a different way. Although we live in virtual isolation, we have learned to be happy with what we have. We have learned a new way. I think this lesson could not have come at a better time for me. After our original diagnosis we somehow stumbled into maintaining our happiness and our love for one another. It was not a conscious decision - it just happened. Somehow, we just dug in and dealt with what lay before us. We just let hope carry us through. But now, we find ourselves in the midst of it again. Fortunately, we have the benefit of experience and hindsight. We can choose how we live our future and that is a gift. We have a hard long road ahead. Based on our discussions with our oncologists we know that there will be many significant hospitalizations. We know our lives will be thrown out of balance. But, we have a choice. No, we won't be able to go to the zoo or the mall. No, we won't be spending a carefree Thanksgiving or Christmas. No, we won't be sleeping comfortably in our own beds. We will, in fact, spend much of our time in the hospital. But how we choose to spend that time and how we choose to experience and reflect on our lives is our choice. We have power in that we can choose how our family spends our time together. We can wallow in self pity. We can be sad that life is unfair. We can complain about the small living quarters or the fact that the food is too expensive at the hospital. Or we can choose that this is our vacation. We can choose that it is a blessing that we can spend so much time together. We can be happy that we will be there to play a role in Sydney's education. Even in all of the murk, there are hundreds of opportunities to enrich our lives, many of which we may have never known if it had not been for this experience. No, I don't like the cards we have been dealt. I don't like the fact that we got "sheered." But it is time to figure out a new way. It is time to shake things up a little. Purpose and perspective are incredible things.
5:08 AM 11/16/2004
This conversation will actually lead into another but I think I clear picture of what lies ahead for us might be of help. First off, we don't know for sure what will happen over the coming weeks and months. What we do know for sure is that we will be starting another round of chemo this weekend. We are not sure of the exact start day but I am assuming that it will be Saturday or Sunday. We are trying to plan her chemo nadir around the thanksgiving holiday so that she can be home with her family after her rounds of chemo but before she would be at greater risk of developing fever and being hospitalized again. Ideally, I think we would like to finish our fourth round on Tuesday. That would give her the entire holiday and weekend to be at home.
We have pretty much decided that Sydney will be receiving another round of the high dose Cyto/Topo/Vinc regimen. Our oncologists are crossing their Ts and dotting their Is as they form their professional opinions. I know that our doctors are in frequent contact with Sloan Kettering as they were the ones who "developed" this high dose relapse regimen. We know that she will not be able to continue this dosing indefinitely. Quite frankly, it is a lot of chemo and the only published studies that exist have only looked at one or two doses on humans. The NANT is coming out with another trial which I believe will try to lengthen the regimen but as I mentioned earlier it requires stem cell support. I am guessing that we will try another round and then, if she is responding to the treatment, we will alter the dosing so that it is more tolerable for her. There are many kids that continue to go to school and live normal lives on the lower dose version (By the way, there is also a "really" low dose version.)
This all begs the question - after Sydney's first round of this high dose stuff, how could you do this to her again? That is a tough question and it gets into some pretty tough "quality of life" issues. This is something that Lynley and I have discussed a lot and a discussion that I will save for a later day. But, as Dr. Eames pointed out, Sydney really tolerated the dose very well from a medical standpoint. Dr. Eames was also quick to point out that this statement was not talking about the mucositus. She was addressing the fact that her vital systems and organs handled the dosing well and recovered quickly. None of us want to see her suffer through the same girlie part problems that she did on the first go round, in fact, that was my first question. Will she be more likely to experience the same problems again? In short, no. The official opinion of what happened was that Sydney developed mucositus - yes, all the way down to her girlie part - which was then compounded by an infection. That was the source of the swelling and open sores. So, why won't it happen again? First, if you look back at how Sydney has always handled her firsts (i.e. first time receiving a particular chemo or treatment) she always has a tougher time. I think her body just isn't used to the chemo. But, after time, her body adjusts and to a certain extent handles it far better. Second, the "girlie part" owie was kind of a freak occurrence. That response is not that common with this regimen. Yes, a little mucositus is expected, but not to that extent. As a plan, this time around we are going to go back to our friend Glutamine. Although there is no documented proof that it helps children, adult trials have shown it to be relatively effective at reducing the mucositus and aiding the body in recovery. So, for all of these reasons, we are going to give it another shot. For the time being, we are going to continue hitting this disease hard and aggressively. It is our expectation that she will tolerate it well. Given that, this is the path we have chosen. We believe it is Sydney's best chance at survival and achieving a second remission. There are still many quality of life issues to debate but for this moment this is our path. Many may not agree with our choices but unfortunately they are ours alone to make. There is no answer - just shades of grey. Thankfully my purpose continues to be black and white.
6:48 AM 11/17/2004
Sydney is doing well. She is having a lot of fun at the house but, believe it or not, is anxious to get back to all of her friends at the hospital. She is spending a tremendous amount of time with Graham and is assuming the role of big sister quite nicely. She is extremely protective of him and has begun to take on some motherly duties. For example, the other night Lynley and I were talking at the kitchen table and we could see Graham making a beeline for one of the plants. Graham understands "no" and "hey twerp, uhn uh." He also knows that he is not supposed to eat the plants but will try to whenever we are not watching. Sydney saw the action as well and began chasing him saying "No, no baby boy (her favorite name for the Grahamster)" Graham was not impressed with his big sister's demands and continued toward the plant. Lynley sounded off "Hey, no, no." To which Sydney replied "Hay is for horses mama, not Graham!" as she gently made her way over to Graham and changed his direction. It gave us a chuckle but during the remainder of the night Sydney would continue to say the strangest things, things we knew were straight from our mouths. Apparently, when Graham doesn't listen to me or does something silly, I roll my eyes, shake my head, and glance at Lynley with a smirk of disbelief at what Graham has just done As if to say "Can you believe this little guy?" Well, Sydney has started to do the same thing and whenever Graham does something strange she will roll her eyes, shake her head, and say Ooh Graham, you are so silly." It is the over-animated gestures that give us fits of laughter. As you can see Sydney is really starting to mimic our behavior and she is becoming a trumpet of our actions.
After Sydney woke up from her nap yesterday afternoon she was complaining that her diaper was hurting her hiney. I changed it but she continued to complain. In an effort to let "it" breathe I decided to let her run around the house bottomless. The problem was that after about an hour or so I tried to get her to put some underwear back on but she would have none of it and I knew that when Lynley got home I would be in trouble for letting our little heathens run around without bottoms on. For the next hour or so I tried everything in the book to try and convince Sydney to put on some underwear. Nothing worked. Then the phone rang. It was Lynley, she would be home in about five minutes and I still had a bottomless squirt rampaging through the house. I would have to be clever. I certainly did not want to get into trouble with my wife for letting Sydney run around the house this way. I would have to listen to the "Wife" lecture - "what if someone came by the house? - blah, blah, blah." So, I turned to Sydney and I pleaded with her. I said "Sydney, please put on your diaper and pants. Mommy is coming home and she will get mad at Daddy if you are running around naked." It worked. I had been saved. Sydney quickly dressed and there she was waiting at the front door as her Mommy came in the house from work. She was smiling and fully clothed. I had succeeded. After a minute of greetings I went to go get Graham from the living room to bring him into the kitchen where the family had migrated, And then I heard it. "Mommy, don't be mad at Daddy, I'm wearing pants - see." I had been foiled. My twerp had ratted me out. Lynley and I laughed for a good twenty minutes once I had explained the afternoon's highlights. Most importantly this was normal. Just a full day of normal. I have to remember how to carry this normalcy with me into the coming months. I have a purpose and I am thankful.
It has been a busy, busy day at work this morning. Have you ever had one of those senses of accomplishment that surprised you, one of those moments that you say to yourself "Wow, I did that?" Well, that has happened to me this morning and although it is completely unrelated to Sydney's diary it has left me in an incredibly good mood. Work has been so sporadic as of late and, even though I am finding a way to put in the time, I always feel rushed and that I could do better. And just then, as I review my work from the time that we were in the hospital I feel good (surprised, but good) that my brain was still functioning and that I was not as out of control as I thought. I actually did some pretty insightful and impressive stuff. Sometimes I feel like an idiot with a purpose, but today, right now, I feel like a smart idiot with a purpose.
Later this afternoon we will be taking Sydney in for a check up at the clinic. There we will draw labs and have the doctors check her out to make sure she is ready for another round of bird chemo (Topotecan - sounds like bird chemo to me.) One of our concerns is some sporadic and recurrent "girlie part" owies. Sydney will complain 2 or 3 times a day, usually after a bowel movement, that her "hiney" hurts. Again, with Sydney, her "hiney", is anything down there in her nether region so it becomes a trick to find out what really is hurting. Regardless, after some trick questioning and some poking around, we have identified the area to be her "girlie part." The pain does not appear to be severe but it is enough to cause her to cry for a minute or two. This really bothers me. I am not excited about giving her another round of chemo without checking this out further. I DO NOT want a repeat of her last round. Hopefully today we will find out some answers.
Well, I have to run, I am so excited that I impressed myself that I want to do a little more. (Not to mention that I have several deadlines this week and don't really have a choice.) So, I must run. I might just get through this thing yet. Good or bad, better or worse, I always have my purpose to guide me.
5:20 AM 11/19/2004
Good Morning!! Well, I have good news and bad news. After a thorough clinic appointment with Dr Eames yesterday, it has been decided that we will be postponing Sydney's next round of chemo until after the Thanksgiving holiday. This means Sydney will finally get to spend a holiday at home without being under the effects of chemo. Unfortunately, the reason for this postponement is her "girly part". Upon thorough inspection, an ulcerated lesion was found just inside her "who ha." It has been decided that we will wait to administer another round until it has healed. The good news is that her counts were fine and in every other way she was ready for the next round. Dr. Eames can't guarantee that Sydney's disease will not progress during this period but she was quick to point out that the delay would probably not be a problem.
We also received the results from Sydney's second day of apheresis and they collected a whopping 5 million stem cells. With that, we now have about 9 million cells in the bank which should be enough if we need them. So, now we know, it is possible to do a stem cell collection on a post transplant kiddo. We now await the results to see if they are clear.
As has become the norm, we spent quite a while with Dr. Eames. I am sure I will be written up again for being a Dr. Eames hog. But hey, I happen to like her. We talked about three major issues. First, we talked about quality of life and our concerns that we want to focus on Sydney being as happy as possible. Lynley was quite bothered by the prospect of spending another six or nine months in the hospital and if the last round was any indicator of what our future would be she wanted to let Dr. Eames know that she was bothered. Dr. Eames was supportive and let us know that Sydney's quality of life was also in the forefront of her mind. As a team we are going to do the best that we can while preserving as much of her happiness and comfort as we can. Secondly, we discussed our therapeutic options for Sydney. Right now, I believe we will achieve a second remission. (Well, I have to.) And this is were the problem lies for kiddos achieving a second remission. You see when you first step into the world of neuroblastoma you have an eighteen month plan. Hopefully you achieve a position of No Evidence of Disease (NED) or Minimal Residual Disease (MRD) prior to transplant. The transplant is then used to mop up all of the disease in the body that can't be found with current testing and analysis techniques. The point is that, even though the cancer cannot be found, there is still another year of treatment to follow - all of it aimed at killing this disease that we believe is there but we can not see. Well, in the relapse world it does not work that way. There aren't any long term plans, protocols, or trials. You live month to month fighting disease until you can no longer detect it and then you are in the position that, once you can't detect it, you no longer have any therapeutic options. This means that there really aren't any options available to you to wipe up this minimal residual disease. And that, in and of itself, is the reason why relapse NB kids have such a terribly poor prognosis. (This is my personal belief.) So, to make a long story short, I am thinking ahead. I am looking for that treatment, or series of them, that will wipe up this (MRD). One option is the 3F8/vaccine trial at Sloan, another option would be another transplant, and beyond that - there aren't many. We need to get Sydney's disease back to NED or MRD but we have to have the treatment that is aimed at mopping it up, as well. We just don't have many viable options. Most relapse trials are only available to kids that have detectible disease so once we get to that point we loose a ton of options. I flat out told Dr. Eames that I would like for her to find this MRD treatment and, furthermore, that I would like to do the treatment at Cook's. Third, we discussed a trial that we will be participating in which is being researched by Dr. Heidi Russell down in Houston. Unfortunately there is not enough time to go into detail right now but I will follow up on this trial next week. For now, I am off to work and a surprise long holiday at home with my purpii.
6:07 AM 11/22/2005
Another good weekend for my sweet little snot. There isn't much time to talk today. Tomorrow I will go into detail about the vaccine trial in Houston. For now, I have a ton of work to do and we have to get ready for the family that is coming in town tomorrow to celebrate Thanksgiving with us. It will be a busy day and I will have to remember, that know matter how busy it seems, I have a purpose.
5:46 AM 11/23/2005
Does the busyness ever subside? Yesterday evening we took Sydney and the little frown monster to see Santa Claus at the mall. For those of you that may not know (and as we have explained to Sydney) there are many back up Santas that work at other malls but the Santa at Ridgmar happens to be the "real" official Santa Claus. Sydney would have to be a good girl and she would have to be very specific about what she wanted Santa to bring her for Christmas. As we stood in line she was excited and, although she was more amused my the fake snow that decorated Santa's workshop (this mall is also a satellite office for Santa), she was ready for action - right up to the point that she was called. She turned shy. I know, a little surprising from a child of my stock. It took bribery and about five minutes of cavorting with Santa and the elves for her to warm up. But just then, once she did, there was no stopping her. I am not sure what they were talking about, they would not let me get to close. After all, Santa/kiddo time is supposed to be as secretive and revered as the confessional. They spent quite a bit of time together and by the end of her time they were buddies. I even asked Sydney what they talked about and she put her finger in front of her nose and just said "shush!" I just hope she asked for something useful like a new suburban, some cabinetry work in the kitchen, or the cure for cancer but, somehow, I think it is going to be a teddy bear deluge instead. Next it was time for the Grahamster. Ironically, he spent most of his time waiting for sister by filling up his diaper and making manly grunts. He was ripe to say the least. He had a discussion with Santa as well but I think he was confused by the whole process and probably just asked Santa for a new diaper. When Santa decided not to grant him his wish he decided to frown. I don't particularly blame him. Regardless, we now have two full-fledged "real" Santa pictures for the Dungan Annals and both will carry some rather funny, if not precious, memories. My purpii sure have a way of making things turn out that way.
6:00 AM 11/24/2004
Sydney is doing well. She is complaining about her "girly part" far less which is, I hope, a sign that genuine healing is taking place. Although it is great to have a holiday without chemo I still don't like postponing treatment. I don't like the idea of giving neuroblastoma any chances. So, for the time being, I am forgetting that we are postponing treatment and concentrating on the fact that she is healthy and happy. Now, onto the trial in Houston.
The trial in Houston is two phased. It is an immunotherapy trial. The first leg of the study is to obtain Sydney's blood to see if they can make lymphocytes that are able to fight and kill Epstein Barr Virus (EBV) and neuroblastoma cells. There is no guarantee that they will be able to do this. If they can, in fact, create the lymphocytes, then they will be offered back to Sydney for the purpose of identifying the biggest dose that can be administered to children safely.
Hold on, you said that the purpose was to see the largest dose that can be safely given to a human. You did not say that the purpose was to cure the disease. That, my friends, is unfortunately the way most of the relapse trials work. We have a lot of options but many are not proven. So, in order to prove them, it takes children like Sydney to make sure that (a) they are safe and (b) that they work. That is the relapse world.
So why would you subject your daughter to this? Well, like I said, most of our options are not proven so these are unfortunately our only choices. Second, as I will explain later, compared to other treatments this trial has relatively few potential known side effects. Lastly, it is important that we participate because research is what will find the cure. Although I certainly don't want my daughter to be a guinea pig it is important for every child that has neuroblastoma or has the potential to get it.
Now, the science. The body has different ways of fighting infection and disease. No one way seems perfect for fighting cancer. This research study combines two different ways of fighting disease, antibodies and T cells, hoping that they will work together. Antibodies (like the 1418 that Sydney received on the last trial) are types of proteins that protect the body from bacterial and other diseases. T cells, also called cytotoxic T lymphocytes or CTLs, are special infection fighting blood cells that can kill other cells including tumor cells. Both antibodies and T cells have been used to treat patients with neuroblastoma; they have shown promise, but have not been strong enough to cure most patients.
The antibody used in this trial is called 14g2a. It first came from mice that have developed immunity to human neuroblastoma. The antibody sticks to neuroblastoma cells because of a substance on the outside of the cells called GD2. 14g2a and other antibodies that bind to GD2 (like the 1418 or 3f8) have been used to treat people with neuroblastoma. For this study 14g2a has been changed so that instead of floating freely in the blood it is now joined to the T cells. When an antibody is joined to a T cell in this way it is called a chimeric receptor.
CTLs can kill tumor cells but there are not normally enough of them to kill all the tumor cells. Some researchers have taken T cells from a person's blood, grown more of them in the laboratory and then given them back to the person. Sometimes an antibody, a chimeric receptor, is attached to the T cells to help them bind to tumor cells. These chimeric receptor T cells seem to kill some of the tumor, but they don't last very long and eventually the tumor comes back. They have found that T cells that are also trained to recognize the virus that causes infectious mononucleosis, Epstein Barr Virus (EBV), can stay in the blood stream for many years. By joining the 14g2a antibody to the CTLs that recognize EBV they believe they will make a cell that can last a long time in the body and recognize and kill neuroblastoma cells.
In this study they will give Sydney ordinary T cells joined by the anti-neuroblastoma antibody and EBV specific T cells with the antibody attached. They will look to see if the EBV specific T cells last longer then the ordinary T cells.
And that in a nutshell is one of the options that we are planning on doing. This risks appear to be minimal, especially when compared to all of the treatments that are out there. There is some risk of injection site inflammation and, extremely rarely, the risk of a secondary cancer but, that is about it. This trial seems like a no- brainer for anyone in relapse land. It is a relatively simple trial to endure and requires little travel. As we get closer I will tell you more. But now, I am off to work and then back to a holiday of purpose.
5:11 AM 11/29/2004
A beautiful Thanksgiving was shared by our family. By all accounts you would think it was a normal, average, happy family with no worries or concerns. To be honest, I purposefully forgot that we were not all of those things. I made a conscious effort to not think about our future or our past and to just concentrate on the now. I was extremely thankful that we were together. But, last night, as the holiday ended and we refocused on what was to come in the next days and weeks, I could feel the fear and the stress well up in me. It is strange. I purposefully try not to think about all of the bad so that I can enjoy what we have and then I end up kicking myself because, in retrospect, I feel like I did not appreciate the time we had enough. I feel like I could have done more. I could have spent my time more wisely. I could have hugged her again or cuddled her a minute more. I really don't know the answer. I don't know how to make it all better. I just want my baby girl to be okay. No one should have to live with this burden and threat. No one should be kicking themselves. We have what we have and I just have to figure out how to balance sharing happy moments with the fear of having no more.
Sydney is happy and playful. She captured some lady bugs and spent much of the last four days tending to their needs. Some have even survived her care. She plays with them endlessly and there is rarely a time that she walks around the house without a lady bug crawling on her finger. The lady bugs have become an obsession for her and I am extremely comforted by the fact that she has found something to make herself so happy - even if it comes at the demise of some of the little critters.
Today we go back to the clinic. We have an early appointment. The intention of this appointment is to check Sydney out to make sure she is ready for another round of chemo. If you remember we have postponed this round ten days due to her girly part. I am afraid that today they will find out that it has not improved much. It is on the mend but the ulceration is still there. This will leave us with some very scary decisions. Can we wait any longer? Will another week to allow it to heal come at the cost of unmanageable disease? Or, will treatment come at a reoccurrence of the pain and infection that we saw during the last round? There is simply no right answer and neither choice is good for our little Sydney. Lynley and I don't know what to do. We certainly do not know the answer and we will, most likely, simply follow the direction of our medical team. This is not were we wanted to be sitting after our first round of chemo.
I don't want to sound negative but I am feeling a little depressed. I am scared and I understand too much. I know the implications of all of these issues and I am now forced to make decisions between two bad alternatives. I don't want to see my daughter endure the pain of the last round and I certainly don't want to wait to allow the disease to take hold.
It is okay. Everyday does not have to be a good day. With my purpose, though, I know tomorrow will be better.
6:51 AM 11/30/2004
A little bit of a late start this morning. After a thorough examination by Dr. Granger yesterday morning it was decided that Sydney would start her next round of chemo. The belief is that her "who ha" is healed and that the abnormality that we saw was scar tissue. Sydney got a late start on the chemo. In fact, she did not start until well after 8:00PM. Apparently she was a little dehydrated and it took a day of fluids to get her specific gravity up to the point that it was safe to administer the drugs. Although it was late and ran through much of the night Sydney tolerated the first day of chemo very well. Her potassium and sodium levels are right where they need to be.
Other than that it was a great day. Sydney was extremely excited to be back at the hospital with all of her friends and, if truth be known, I was pretty happy too. It is odd how close we have become to so many of the people at Cook's. Here I feel safe and loved and know that my daughter is in the best of hands. Aside from the chemo, infections, and pain, this has become one of my favorite places to be. In that sense I am a lucky, lucky man. Yes, yesterday was a much better day.
Well, I have to run. Dudely is out in the hallway with Lynley chatting up a storm and Sydney is starting to stir. It is time to do some Daddying. I am comforted here, somehow my purpose feels rejuvenated.
7:00 AM 12/1/2004
Everything is going well. Although I am just waling up due to the fact that Sydney and I were up every half hour all night long. We are all tired. I will be in touch soon.
HOLEY WHO HA
5:45 AM 12/2/2004
Aaah wonderful sleep! Sydney had a much more comfortable night of sleep last night. And I don't just mean better or normal. I did not hear her wince even once which is a significant surprise given the day and night before. Let's see, where to start? I guess I can go back to day one. Sydney's chemo was delayed until a little after 8 PM on our first day in the hospital. Her specific gravity was off. It took a bolus of saline and several hours of hydration to get her where she needed to be. Unfortunately, that meant that she would be receiving her chemo throughout the night instead of the day. This is not a huge deal for us. It just meant we had to stay up a little later as they hung the first round of chemo. For Sydney, however, it was a bigger deal. For her, it meant that she would have to be checked and that her diaper would have to be changed regularly throughout the night. During the six hour Cyclophosphamide infusion they need to make sure that she is passing the chemo. We call this checking her "ins and outs". In other words, we have to check to make sure she is "peeing out" the chemo. We have to know that what we are putting in is coming out. Yes, we don't want the chemo to stay in to long but more importantly it is an indicator of how well her body (i.e. kidneys, liver, bladder) is functioning. On the first night she went regularly and changing her diaper every two hours seemed to do the trick but, on the second night, I was not only changing her diaper every hour but, in many cases, I was also changing her linens. As I mentioned yesterday, our little pee party kept us up most of the night.
We are also seeing signs of the return of her girly part owie. She complained of the pain throughout the day yesterday. Her "who ha" is red and we are seeing the rise of another dimple but it honestly does not look as bad as she is acting like it is. Which leads us to wonder - What is going on? We have several different ideas but we are not sure that the pain is coming from what we can see. Something is going on inside her. To complicate matters we discovered blood in her stool last night. It wasn't a lot and it can not be seen with the naked eye but we could tell by smell. Sure enough, the poo poo test has confirmed our smelly suspicions. She has a small amount of blood in her stool. Now this begs another question. Where is it from? We regularly test her urine for signs of blood. This is to make sure that her body is processing the chemo correctly. Sometimes the chemo will cause blood to be seen in the urine because of her bladder not functioning properly. This is a direct result of the body not being able to tolerate the chemo. Now, when blood is in the stool, it is quite a different matter. This is not caused by the body's inability to tolerate the chemo but rather some type of bleeding. This means that she is bleeding somewhere internally - not a lot, but some. So where it is and what it is remains a mystery.
The original plan was for Sydney to receive her last round of Topotecan this morning and then we were going to be sent on our merry way but given these new occurrences I am somewhat doubtful. In addition, her labs have come back "off" this morning. Her CBC shows a premature dip in her hemoglobin. Right now she is at 8.8 and we normally transfuse at 8.0. To be honest, I don't know what they will decide to do. I think it would be highly unlikely that she will be able to make it through the weekend without a transfusion and that, on top of everything else, leaves me a little weary.
In short, we have some funkiness going on although Sydney slept very comfortably throughout the night. Today we are supposed to go home but several of these occurrences leave that in doubt in my mind. Only time will tell. Well, and, of course, my purpose.
12/3/2004 5:12 AM
Can you believe it has been a year since Sydney's stem cell transplant? Today marks exactly one year since she received her precious stem cells back. This really has been quite the journey. Well, we are home. Dr Eames gave us the green light. Sydney finished her Topotecan at about 9:00 AM and we made our jolly way home. Dr. Eames was not particularly concerned about the stools that had tested positive for blood and it is her belief that it is probably just a result of some irritation due to all of the diarrhea. Her decreased hemoglobin also didn't come as a surprise and she felt that it was probably fairly normal for Sydney. So, given all of that, she sent us packing.
Sydney had a better day and to my recollection I don't even recall her complaining about her girly part. We are watching it extremely closely and, so far, it looks no worse for wear. She is complaining about stomach pain and pain in her hiney but that seems pretty much isolated to her bouts of diarrhea. We are a little bit concerned about mucositus. We have noticed a film on her tongue and the appearance of some sores and curling. She still is eating and drinking very little and turns her nose up at about everything that we lay before her. So, we have some challenges but, all in all, we are just happy to be home for a while.
Today we will be going back to the hospital for an interview with one of the local radio stations (102.9). Each year during the holidays the hospital holds its radiothon to raise funding for the hospital. These funds go to buy new ambulances, new medical equipment, and remodel specialty services such as the critical care unit. Lynley and I feel that the least we could do is help them out by sharing our story over the radio. This hospital and its people have done so many things for us the least we can do is the same for them. Regardless, it will also be another opportunity to get the word neuroblastoma out their in the real world.
We are hoping for a quiet weekend. It would not surprise us one bit to end up back in the hospital. In fact, we will have our bags packed by the end of the day. We both know we are operating on borrowed time before a fever rears its ugly head. We just want to keep her comfortable and happy in the meantime. Well, I am off to the showers and out to the office. There is a week's worth of work to accomplish in a single morning. I have to get this work out of the way so I can focus on my purpose.
4:43 AM 12/6/2004
Good Morning!! It was a busy weekend. Sydney is doing fairly. We will be going into the clinic this morning for a checkup. Sydney has not been eating or drinking very well and we will be making our case for a week or so of TPN and lipids. Currently she is drinking little and eating even less. I think the grand total of food that she stuffed in her mouth yesterday was 4 crackers, 3 small pieces of cheese, and 4 cheerios. She has had nausea throughout the weekend and has thrown up on a few occasions. Daily bouts of diarrhea are also of concern. Her weight is clearly down and her little tummy no sinks into her body.
Her mouth appears to be better. Well, not better, but, not worse. She will complain a couple of times a day about her mouth bothering her but all in all it is not that bad. The pain coverage from the Hydrocodone seems to be doing the trick. Additionally, she continues to complain that her hiney hurts and she has several episodes during the day where she will complain and cry out for several minutes about her hiney.
Last week we were anticipating a blood transfusion today. It is a possibility but her color appears to be pretty good. Although she is clearly not running like a fine oiled machine she is staying pretty active. At times she is even what I would call playful and exuberant.
Wow, there is a lot to cover this week. I just spent about a half hour with Lynley out on the back porch. Our lives are moving at a feverish pace. We talked about a lot of things but most importantly Sydney. As a parent it is sometimes difficult to come to terms with the reality that you are living and, when dealing with relapse, hope can sometimes be elusive. Lynley and I are good for each other. We seem to be able to carry each other when the other is in need. One of the harder items to come to terms with in this whole challenge in our lives is the question WHY? Why did this happen to Sydney? Why did this happen to our family? You see, to keep hope alive, we have to be able to answer this question. It has to have meaning. To a certain extent, we are past current medicine. Yes, we are using therapies on the cutting edge, but the silver bullet remains hidden. Today there is no answer or cure. So what we have, what keeps us going is the faith that we will get our miracle and the hope that we will be different. We have the hope that a new answer will be found in time or somehow, just somehow, our destiny was for Sydney to relapse and to survive. Was that our reason for being here? Is that our purpose? At this point, there aren't any answers. We just have what we have. But we have to believe. We have to keep moving forward. We have to keep finding hope in wherever it can be found. We will take baby steps and live each moment to the fullest. We have purpose but sometimes we just don't know what it is.
6:29 AM 12/7/2004
TPN Yeah! Sydney's weight had dropped to 11.8 kg. That means she had lost a little over 2 pounds since last Thursday. The good news is that we have her on nightly TPN now. The other bright stars were that her counts and labs looked great. We imagine that she is still on the downhill slide but we were able to sneak through the day without any transfusions. It will be another two weeks until we are able to take her out of social isolation. Her "who ha" has shown some deterioration but for the most part she looks great. "Great" being a relative term for someone a week off of high dose bird chemo (Topotecan - sounds like bird chemo to me.)
As I mentioned yesterday it has been very busy. We have been looking for two new cars (well, new to us). With a new "graham of rice" on the way we need the extra seating and a reduction in car payments. Yes, you heard me correctly. I don't know what Lynley keeps getting into but she done got her self pregnant again. She blames me, but how could it possibly be my fault. If she wasn't so darn sexy she would not have got herself into this mess. Either way, we have known for quite sometime. In fact, we found out about a month before Sydney was diagnosed with relapsed NB, which brings up another point. I have discovered two seemingly plausible causes for neuroblastoma. One, Sydney only seems to have cancer when she has hair. Whenever she is bald the cancer goes away. So, if I have to, I will now keep her bald until she is thirty and out of harms way. Secondly, Sydney seems to get neuroblastoma when Lynley gets pregnant. I haven't decided what to do about this one but the correlation is perfectly clear. So, in the future, I guess I will have to wear special glasses that make her not so darn sexy. There, problem solved.
Rats!! I have to run. More on the "graham of rice" and my SuperDad Mobile tomorrow. Yep once again, my purpose seems to be growing.
4:47 AM 12/8/2004
Well, I haven't made it into the office yet this morning. There is something about Sydney being hooked up to IVs that keeps me from running in. I know Lynley is perfectly capable of handling everything but I am just more comfortable here. So, until the pumps beep this morning I figure I will just sit quietly in the den and type away. Sydney is extremely thin and spent most of her day cuddled up with her blanket on the couch. Both Lynley and I were a little tense (not at each other, just in general) Throughout all of her treatment I don't think we have ever seen her this skinny and we have only seen her this lethargic when she was in transplant. I guess this is a result of this being high dose Topotecan and justification for the reason that they have this same dosing in a phase 1 trial that includes stem cell support. Regardless, it is hard to watch her waste away mentally, physically, and emotionally. Yesterday, she threw up twice. The poor little thing would just stand there in the middle of the kitchen floor in her t-shirt and diaper, skin and bones, and wretch into her little bucket. We would rub her back to make her feel better and I could feel every bone in her body. She is sad and it is somewhat depressing for us all.
The good news is that we finally got the TPN up and running last night. A glitch with the paperwork delayed our start by one day. Sydney threw up again a little after midnight but at 4:00 AM when I went to change her diaper she looked up at me and said "Daddy, I feel better. I love you very much." That was enough to send shivers down my spine and comfort to my soul. Yes, she seems to be bouncing back a little. Last night we were a little concerned about her color. Although her labs were fine just the day before, the lethargy and paleness were signs, to us, of the need for a transfusion. I think we will run labs into the clinic this morning just to be on the safe side. It would not surprise be if she needed her tank refilled. After last night I believe we are truly on the mend but it will still be a few weeks before she bounces back completely.
Okay, so we have Sydney, Dudely, and "what's its name". "What's its name" will be here on June 1st and we are doing whatever we can to get ready. We have a four bedroom house but the 4th bedroom exists out in the guest house so that really won't work for our needs. We have contemplated buying a new house or remodeling the one that we live in. In the end, I think we will probably move. The last thing we need for Sydney is a lot of construction dust. The problem is that there will be some construction either way. We are still yet to complete the kitchen remodel that was in process when Sydney was diagnosed just about 1 and a half years ago. Luckily, it is just cabinetry work that remains but finding the time to hire someone to do it and redrawing the plans is just not in our timeline right now. So, to make a long story short, we have not decided what to do. And the answer is - when you don't know what to do - go buy two new Suburbans. I must admit, mine is pretty cool. I am quite the Dapper Dan driving around town. It is beautiful. It is grey with a tan leather interior. It has captains chairs (a requirement for us) in both the front and the middle row. This allows us to put in three car seats and still leaves room for others to get into the seats in the back. My ultra cool dadmobile also came with a TV and vcr which has Sydney quite excited. It is quite a luxurious change from my old Suburban which, like all of the cars that I have owned, was a hand me down from Lynley. I am finally down right studly in my own right. We are still in the process of negotiating a Suburban for Lynley. She is trading in her 2003 Aviator for something larger. She, of course, wants something nicer than mine and is currently perusing a couple of Suburban Z71's. She needs a 4 wheel drive like she needs a hole in the head. She is trying to justify it by saying that she likes to ride high on the road but I know she wants it so she can just be a girly version of studly. Regardless, we are in the midst of negotiating a white one for her. Who knows, maybe by the end of the day she will be sporting a new auto herself. So, in a nutshell (literally) ,that is the goings on in our family. We are the usual abnormally normal family with a purpose.
6:48 AM 12/9/2004
Okay, so yesterday we got a full tank and topped off all of the fluids. Sydney received both whole blood and platelets. So, great -- your thinking! Well, guess what? At about 1:00 AM my sweet little bugger woke up with a 102.8 F fever. So, guess where we are? Yep, Cook Children's Hotel and Fever Spa. As you might guess, I am a little tired. Either way, we are here, we are safe and since we got here Sydney has not spiked another fever. Ooh, and by the way. Lynley won the battle. She is getting her freakin' Suburban Z71. That officially makes her cooler than me. We will just have to find a way to pick it up from the dealer. Until then, I can retain my title as super cool daddy dude. Two new Suburbans, a pint of blood, a fever, and a purpose. What a busy, busy day.
6:46 AM 12/10/2004
Day 2 of F&N (fever and neutropenia) Sydney has not shown any other signs of fever. She came close yesterday but never hit that threshold. She seems better to me. She is still bed ridden and still chooses to watch television most of the day but she is perking up. She seems happier to me. She is playful, well playful in her bed, and her spirits seem to be up. I am hoping that she will continue on that trend today. I am still tired. We had the night of the malfunctioning pumps and by this morning we had switched out two of them. For me, it seemed like I was up every hour on the hour with a misbehaving pump or with changing a diaper. I think Sydney slept better than I but of course, that is because she is a bed hog.
I imagine that we will be here for at least another week. We will need to see counts starting to recover. If I remember correctly, we are on day 12 and I imagine it will be day 21 before we have an ANC that will allow us to leave. Don't tell Lynley that. I think it will only depress her. But, the good news is that things are not worse. Sydney seems to be comfortable and happy. We are together and we have a purpose.
4:05 AM 12/11/04
Welcome to an early Saturday morning. I am guessing that the lack of sleep finally caught up with me. I was in bed and asleep at about 7:30 last night. I slept comfortably for the first time in several nights although I fear I may be coming down with something. This is the first time that I have even felt mildly sickly in as long as I can remember. When I woke up this morning there was something running down the back of my throat it feels a little sore. I have taken some Tylenol cold medication in the hopes of catching whatever it is early. This could be the first time I have ever been sick around Sydney so I am a little concerned. I don't want her to catch whatever appears to be looming inside of me. I think today I will wear a mask just to be on the safe side. I am hoping that it goes away soon.
Sydney, on the other hand, has shown many signs of improvement. Yesterday she started eating in earnest. Now, don't get me wrong, she is not back to a normal appetite. But, she is eating something from every meal and is asking for food. This is a very good sign. She was also pretty active yesterday, electing to go to the playroom, taunt the nurses in the hall, spend about an hour painting, and even attend a board meeting with Santa Claus who was available by satellite. She was in a great mood and, although she skipped her nap, spent the majority of her day in great spirits. She teased me most of the day.
Sydney and I have a pretty good time. We have learned to make do with whatever we have. Yesterday afternoon we spent about an hour playing hide the gum. She had a stick of gum and we would both hide it and then make it magically appear behind our ears, in our shoes and so on. We really had a great time and spent the entire hour giggling. It is so fun to have my playmate back.
Yesterday we met with "Dr. Handsome." He was pleased to see Sydney doing so well and was quick to point out that he would've let us go home on Saturday but Dr. Eames was going to be in so there was nothing he could do about it. He said it jokingly, of course, but it was nice to have the reassurance that Sydney was doing so well. Everyone is anxious to see her counts start to show signs of recovery so that we can head back to the homestead. As always, the staff, nurses, and doctors have been great and we feel just entirely to lucky to have them be a part of our lives.
Well, there you have it, that is the update. I am going to go concentrate on feeling better so that I can stay with my purpose.
6:00 AM 12/13/2004
Sydney continues to improve. She is just about back to normal. Yesterday she had another tank full of platelets and I am guessing that today she could receive some whole blood. The only problem that keeps recurring is a stomach cramp which seems to coincide with either a bowel movement or the administration of certain drugs. Other than that she is playful and happy.
My health continued to deteriorate over the weekend. As of Saturday evening I was officially sick. I probably have some type of virus. I am wearing a mask and spending the nights at home with Graham while Lynley cares for Sydney. It is really strange. I know that there have been one or two nights throughout Sydney's treatment that I have not spent the night at the hospital but it feels entirely too strange to not be there. It is a foreign concept for me.
Yesterday morning I decided to get my illness checked out. My biggest fear is transmitting whatever this is to Sydney. So, to make a long story short, I went to the Daddy hospital next store. I explained to the nurses and doctors that I was not terribly concerned about my own welfare but that I had a daughter across the street that was a neutropenic HO patient . I just wanted to see if we could treat my illness quickly and see if we could diagnose the problem to ensure that Sydney would be receiving adequate antibiotic coverage. I was hoping that they would culture me or just give me an indication of what I had or how contagious I might be. Nope, no such luck and, in fact, after the doctor examined me and we discussed my various symptoms, he asked me what he should do. He suggested a chest x-ray and then said that it would be useless. I suggested a CBC and he said, quite frankly, he thought that it was stupid. The CBC would show an elevated white count because I was sick. He said we already knew that. And an x-ray could potentially show some junk in my lungs. We already knew that as well. I was getting nowhere fast. In the end, I basically found out no more than I knew in the first place. He prescribed some wimpy antibiotic and cough syrup and sent me packing. I was thoroughly unimpressed. Yes, the adult world of medical care certainly does not compare to the standard that my daughter is receiving. I am thankful she is in the hands of her doctors and nurses and not mine.
It is time to go. I have to get ready to head into the hospital. Even though I cannot be there, it does not mean that my purpose is any less important.
6:01 AM 12/14/2004
Sydney had another great day. It is clear that she is feeling much better. Her weight is back up to 12.6 kg and her appetite continues to return. For the time being she will remain on TPN and lipids but it is clear that she is on the mend. Her white count is still nonexistent which, based on our last round of this combo, is not too surprising. Lynley is anxious for the little cells return and although I am doubtful we will see any signs of their recovery in the next few days I promised that I would start performing my stem cell dance in earnest. In another, less effective effort (in comparison to my stem cell dance), Dr. Eames decided to double her dose of GCSF to help speed the process.
Since we are already in the hospital we talked to Dr. Eames about moving up the scans and having them scheduled this week (as opposed to the week after Christmas). She thought that was a reasonable request and scheduled Sydney for an MRI of her leg, a full body bone scan, and bilateral bone marrow aspiration on Wednesday. It would be nice to see some signs of improvement on the scans before Christmas although we know the bone marrow results will probably not return until after the holidays. So, I guess you could say, all I want for Christmas is my two clean scans. If anyone gets the chance to sit in Santa's lap it would be helpful if you could throw that in for me.
As for me, well, I am slightly better. I am still dawning a mask and I am pretty congested. This morning I woke up with a pretty bad headache. I still have a cough and my nose is only firing on a cylinder or two. Somebody wrote in the guestbook yesterday about my experience at the hospital next store. They had some great information that I did not know but, then again, unfortunately, it is obvious that my doctor did not either. I wish I had known that you could potentially tell the difference between a bacterial infection and a virus. That was exactly the type of information I was looking for. I guess when he asked me what to do and I said I assumed he would draw some labs I should have specifically asked for a CBC w/ diff instead of just a CBC. On another note, I still think I have a wimpy antibiotic but I am all for saving the big guns for the really ill.
I guess the difference between the care I received at the other hospital and the treatment that Sydney is receiving is what appears to be the level of interaction. With Sydney's care I am allowed to ask questions and learn. I am encouraged to participate. It is hard to explain the difference. I was an inconvenience there. Even though I was polite and fairly jovial it was clear that I was worried about the exposure to my daughter. I explained to every nurse and doctor what my situation was and they seemed to have cared less. I was another number, another patient to get through. When I got back to Cook's after my experience Dr. Eames made me open my mouth and she took a look. She told me to take my medicine, get some sleep, wear a mask. Most importantly, she told me not to worry. She explained that the risk of me transmitting whatever I had to Sydney was low due to the precautions I was taking. She made me feel better without any medicine at all and that was the difference. Yes, I have a cold. But, who really cares. I don't. What I care about is Sydney. What bothered me was that I could have potentially been the cause of a life threatening illness to my daughter. I just needed to be told it was okay. I needed reassurance. A purpose is to be encouraged, not ignored.
10:12 PM 12/14/2004
I am writing this entry a little early because I know I will not have time tomorrow morning. This will be a quick update although it gets into some things that will be the subject of debate for the days and weeks to come. First off, Sydney is doing fairly well. She has developed a sore underneath her Sorbaview (the bandage that covers the noodles going into her chest.) It causes her significant pain and has increased in size over the last two days. We are doing daily dressing changes and applying antibiotic ointment to the area. Secondly, she keeps having an allergic reaction to "something." Last night we thought it was a result of her blood transfusion but the blood was tested and found not to be the culprit. Additionally, she had the same reaction tonight without a blood transfusion. We are in the process of nailing down the mysterious hive producer. Third, when I left the hospital tonight Sydney's temperature was climbing. I just called the floor and, as of now, she still has not had a fever.
Now, lets get into the drama. Lynley accidentally poured a large glass of water into my laptop. It is officially dead although I was able to save the hard drive and transfer into another computer which a friend has lent to me. Although it took some time out of our evening, in the end, it turned out to be okay. I am back up and working.
Second drama - we found out today that if we want to pursue treatment at Sloan Kettering and enter their antibody trial we would be starting on Dec. 27th and it is likely that we would spend half of the next six months in New York. The timing just happens to be right for Sydney to enter the trial. We have some huge decisions to make. We are trying to balance intelligent medical decisions with some significant deterioration of our family's quality of life. It hit us like a brick wall. We are days away from making a decision. It is going to take some significant soul searching. More on this in my next entry because now I have to finish work so that I can go home to concentrate on my purpose.
9:07 AM 12/16/2004
This update is coming pretty late. It has been a chaotic 24 hours. I am on the mend but life has been switched into fast forward. Sydney is doing fairly. Not great and not terribly. We are starting to see the presence of immature cells in her labs but her marrow is still yet to bounce back. Her ANC is still nonexistent. The sore on her chest has continued to deteriorate. It is now about 3cm X 3cm and the center has a blueish hue. We have added Vanc (an antibiotic) to the mix to help keep the infection away. The sore causes significant pain and Fentanyl has been added to her regimen. For the most part she is fairly active. She enjoys walking the halls and playing in the room. She seems to be relatively happy considering all that she has been through and continues to endure.
It has been decided that we will be flying to Memorial Sloan Kettering in New York for tests and scans on December 27th, 28th and 29th. We spent a substantial amount of time on the phone yesterday with Dr. Kushner and both feel comfortable with taking our family there in consideration for the possibility of receiving the 3F8. There is a lot more to discuss but this is not the time or the place. Today I will be trying to secure flights for our family. I have a feeling it will be expensive to say the least. I am hoping that we may be able to acquire some type of discount and, most importantly, some seats.
We received the results of Sydney's bone scan and MRI yesterday. Both were clean indicating that whatever was there before had resolved. The only spots that showed up on her tibia were the areas were the biopsies were taken. There was nothing else. No signs of cancer. Period. We are hoping to hear a preliminary report on her bone marrow aspirate and biopsy today. The official results will not be available for several weeks.
I am sorry I have to cut this short. There is a tremendous amount to talk about but my purpose calls.
6:44 AM 12/17/2004
Good Morning!!! Had I written this last night it would have had a very different tone, but now, right now, I am comfortable - even excited. Yesterday Sydney's sore on her chest continued to grow and get worse. With no real significant signs of improvement in her white blood cell counts I felt like I was just holding my breath. As many times as we have been through this I was just not sure her marrow would recover. Once again, this dosing is incredibly high and extremely myelosuppressive. I felt like I did at the beginning of this journey. Even with all of my experience I was standing in an aura of fear. "What ifs" were welling up inside and every breath felt shallow and empty. I was scared, on edge, and fearful about our future. It just amazes me that this disease still has such control over my psyche but then again, when it is your child, I don't think it can be anything but scary.
I still haven't healed entirely and I am forced to go home at night. I still have a cough and the last thing I need to be doing in my sleep is spewing germs across the room. Last night, after everyone was nestled in their beds I went home. I was nervous and away. Neither of which did I like.
When I woke up my first move was to grab the phone and call our nurse. Everyone slept well and as a bonus we had some results. Sydney was now showing real signs of recovery. Her WBC count was .2. The first indication of a true recovery. This meant her sore would start to heal. This was good and has left me breathing deeply and relaxed for the first time in several days. My baby girl will be all right. My purpose is getting stronger.
7:30 AM 12/17/2004
A little later.....I forgot to mention. We got our bone marrow results. They are clear. We still have to wait for an official opinion from Seeger's lab in California but that answer is weeks away. We will have another round of tests and scans before we get any feedback.
We still have some recovering to do but we are preparing for our trip to New York. There seems to be some insurance issues and the exact dates of our scans are not as clear as we first thought. We know we will be there for three days the week after Christmas but which three days remains somewhat of a mystery. We are hoping they sort things out quickly as the seats on the planes are filling up and getting more expensive.
There is some interesting things surrounding this entire trip to New York. It brings into question a tremendous amount about Sydney's future. Dr. Kushner seems to see a glowing silver lining. Tomorrow I will have time to talk about it. Until then, I have a purpose.
Oh and by the way. Thank you for all of the email and support. If you sent email to email@example.com, I received it. Unfortunately, because of who we are using as an internet provider I can receive but not send email from here right now. I do appreciate all of you and I will write as soon as I can get it straightened out.
5:54 AM 12/20/2004
Good Morning!! We could be going home today. Sydney is doing very well with the exception of the hole in her chest. She is playing full throttle and our biggest challenges are trying to keep up with her in the hospital. She is anxious to get home to see her kitties and her doggies and has spoken about it several times over the last few days. Sydney spends most of her days without her IV pole. She is hooked up at night for her TPN and a couple of times throughout the day for IV antibiotics but spends the rest of the day noodle free.
The hole in her chest causes me some concern. We are having some difficulty getting it to heal. It seems that every time we perform a dressing change it turns into a bloody mess. We are trying a variety of bandages to keep them from sticking to the open wound. The best way to describe the sore is to imagine a nickel of flesh taken out of her chest. It is about as round and deep. The redness and inflammation has subsided and all that remains is this empty hole. It is really hard to imagine that this all started because of a little tape allergy, a little redness on the skin.
Sydney's counts continue to rise. Her WBC was .7 as of yesterday and we are expecting it to be over 1 today.
Now, on to our little trip to New York. We will be leaving early in the morning on the 26th and will get back home on the 30th. My mother and the nice people at American Airlines were able to work out a deal to get us three free tickets for an adequate supply of her frequent flyer miles.
Here is the deal. Dr. Kushner does not think we will qualify for the 3F8. I know what your thinking. Why not? Is it because of the chemo she has received? Is it because she has already had antibody therapy? No and No. Believe it or not, he does not think we will qualify because we have not met his definition of a relapse. In fact, he questions the very existence of a relapse based on the information that we had given him. From what we gather, although he has not seen the MRI, he is highly suspect of disease in the tibia based on the bone scan and the MRI. He is extremely suspicious of the fact that although the MRI "lit up like a Christmas tree" we were unable to detect disease in the aspirate from the tibial bone marrow biopsy. Furthermore, it does not appear that he is a fan of immunocytology and even went as far as to call the technology "experimental." Because all of our aspirations were negative by morphology he finds our relapse to be highly suspect. So, in short, we are going to Sloan to find disease, which is probably fairly unlikely.
So, how do we feel? Well, it is interesting for sure. We obviously won't be making any decisions until we know more. The idea that Sydney may not have relapsed is intriguing. It is a significant source of hope for overall survival. But, we are tempering our excitement. There is still some significant hurdles. First, Dr. Kushner will be reviewing all of our records to formulate an opinion. Second, we will have to wait for all of the results from our tests at Sloan. And third, well, is Dr. Eames and our team here. The fact is we trust hers and their judgment. She is part of our family and if she believes that we relapsed it is certainly not something to be taken lightly. Dr. Kushner may not have the full picture, as of yet, and his opinion may change once he has had the opportunity to review Sydney's records. Simply put, we have a glimpse of hope, the possibility of a Christmas miracle, but we are tempering our excitement and expectations because we trust in our team here and we know there are many hurdles to overcome. It will be an interesting couple of weeks for sure.
Over the next few days I am digging into the research. I am re-preparing myself for all that is Sloan Kettering, the 3F8, Dr. Kushner and Dr. Cheung. I will also be working on an in depth understanding of immunocytology. If, in fact, our relapse question comes down to this test I want to be prepared to make an educated decision. You have to admit this purpose stuff sure is interesting.
5:39 AM 12/21/2004
Well, I guess they finally had enough of putting up with us. At about 5:00 PM they gave us our walking papers. Yesterday, for Sydney, was much like the days before. She was active, playful, and happy. Her white count ended up being about 1.7 which was substantially higher than we had anticipated although she was in need of platelets. After a platelet transfusion and a full body CT scan (including orbits) we were sent packing.
Sydney's sore was about the same yesterday afternoon. It is still an empty red hole. In the end we decided to use a type of bandage called a Zeroform. The gauze that makes up this bandage is impregnated with sterile petroleum jelly and it keeps the bandage from adhering to her open wound. The wound is granulating in but I imagine it will be the end of the week before it is well enough to leave out in the open air.
It was time for us to get out of the hospital. Sydney was anxious to get home to see her kitties and doggies but beyond that her body had recovered with the exception of her chest. The central line site looked pretty good but the areas surrounding it were looking worse for wear. You see, we have to keep a bandage over the spot where the noodles go into the skin. It was this bandage which created the tape erosion that eventually turned into the hole that is left in her chest. Even though we use Duoderm (a protective "skinlike" membrane) to protect her skin from the adhesive on the bandage it was clear that the surrounding areas were also beginning to deteriorate. There is a small, red, bumpy, and inflamed rectangle sitting on her chest from where the bandages where placed on her chest. It is nice to finally be deaccessed (they take the needle that connects to her noodles out of her port) so that we can give her skin the opportunity to recover.
We are somewhat excited to go to New York but we really don't want to leave our family at Cook's. They have once again proved to be a valuable part of our team and an important part of our family. We will miss each and every one of them during our time away. There is something very special about those wonderful people. I will never find a way to express my deepest heartfelt thanks. There just aren't the words.
For now, I am off to work. There is a mountain on my desk to get through and I still have not had the opportunity to get together with Santa to make sure we did not get people the same presents. It will be a busy couple of weeks but thankfully we are home, we are safe, and we have a purpose.
5:36 AM 11/22/2004
Am I the only one that has not started Christmas shopping yet? This is certainly no way for SuperDad/Santa to act. I have to admit that I have been a little busy this year but I still feel a little bit behind the eight ball. Luckily, Lynley and I snuck out for a little while to get the kids taken care of and we shopped months ago for the family. But, I still have not taken care of my honey. Sure, we got ourselves new cars and we said they were Christmas presents but the fact remains that she still needs something under the tree. Today, I will have to be clever.
Sydney is doing superbly. The sore on her chest continues to improve. We received the results from the CT scans and we are happy to announce that Dr. Eames gave us the all clear. Not even a smidgen of disease was found anywhere from the top of her head to the bottom of her toes. We did not expect to see anything but it was still really nice to hear. There is something about scans that makes you fear for the worst. After all, this was the first time we had ever scanned her orbits so we were a little tense.
Sydney is having a great time running around the house. She continues to chase lady bugs around unendingly. She has quite the collection and, for better or worse, my house and yard seem to have a never ending supply of the little red bugs. She catches them with her hands, names them, and then sticks them into a small bug cage that she received as a gift. Unfortunately, nearly all of them die under her care but, none the less, she continues to care for the "sleeping" bugs until Mommy or Daddy set them "free" again.
We are still in a mad rush. As I write Lynley is sitting in the kitchen crazily wrapping presents. Tomorrow morning we will have a clinic appointment and an ABR (hearing test) and then we will be off to the stores to shop for some warmer clothes for our impending trip to New York. I am behind on my shopping, behind at work, and behind on everything else, but, with my purpose, I still feel like I am ahead in life. Handy little thing (a purpose), isn't it?
4:35 AM 12/23/2004
We have learned a lot on this journey and one of the toughest parts about living in the hospital is disciplining a child with cancer. Early on we were so shocked about the diagnosis and we were so concerned about her welfare and her future that we spoiled her rotten. When you have a child in pain or a child who is sick it is very easy to let manners and politeness fly out the window in an effort to comfort. We got into the habit of giving her small gifts "happies" for just about everything that was even mildly traumatic. In the long run, we created some problems every time we left the hospital. But, after months and months of practice we learned that we could still discipline her without an overwhelming feeling of guilt. We learned to balance discipline and hospital life. This really does help. It sounds rather harsh but dealing with even the smallest of discipline issues early makes her much more able to deal with her treatment. In Sydney's case, she learned what was expected of her and was better able to deal with new and different situations as they occurred. So, my advice, if you are new into this world, is to learn how to come to terms with dealing with your child's behavior in the hospital early on. In the long run it really does help everyone involved. Now, I tell you all of this great philosophical stuff to set up this next story.
Most of the time Sydney is sweet and funny in the hospital but like anyone there are times that she has had enough, especially when she has missed her afternoon nap. One evening while we were in the hospital this last round Sydney had done just that. She defiantly skipped her afternoon nap even though I had clearly told her that skipping her nap was not an option. Later in the evening, after the orneriness had really started to settle in we were preparing for bedtime. The night nurses were making their rounds and Donna (one of our favorites) decided to stop in to check on us. Sydney was sitting on her mother's bed. She was wearing red and white striped pajamas. Donna came into say "Hi" to Sydney and said "Well, don't you look like the cute little candy cane?" To which Sydney responded by saying "No I don't look like a candy cane. I am pretty!" Sydney then folded her arms across her chest, stuck her tongue out at Donna, and then turned her back to her. Now, I must admit, her little dramatic twerpfulness was hilarious but we knew the behavior was totally unacceptable. Sydney was scolded and told to never, never, stick her tongue out at anyone again. She was told that that bad behavior was never an option. We made her apologize and that was the end of the incident although the story made it out to the halls and everyone got a great chuckle.
The next day I was going to make sure that Sydney took her nap. I nestled her into bed and after about 30 minutes of twerpfulness prior to sleep I told Sydney that she was going to take a nap and that not sleeping was "not an option." The little turkey stuck her tongue out for a moment and then began licking her lips. She had an evil grin. She had outsmarted her father because now, if I scolded her about sticking out her tongue, she could just say that she was just licking her lips. Pretty brilliant for a little 3 year old if you ask me. Regardless, I told her I knew what she was up to and that the behavior was "not an option."
Sydney's behavior improved with her naps and, unless she missed one, she was generally a well behaved little girl. However, to this day, if I give Sydney an ultimatum or choices that she does not like, she will deliberately lick her lips and then explain to me that her choices are "not an option!" Boy, isn't parenting fun.
Today, we go to the clinic for a checkup and to ensure our tank is full for our trip. We are also scheduled for an ABR (hearing test). Things are busy, busy. I just hope I get a nap today. After all, not staying on top of my purpose would just be "not an option."
5:37 AM 12/27/2004
Beautiful New York City! Well, yesterday morning we safely arrived in New York City. Sydney is having a blast and spent much of her afternoon camped in front of the window of our room at Helmsley Medical Tower watching the snow sprinkle down onto the sidewalk and streets 8 stories below. Of course, she should have been napping, but to her, that really was not the point. Apparently it was "not an option." At about 4:45 PM we finally gave up on getting her to nap and we bundled her up for our first official outing into the big city. We took her to see the Christmas Tree at Rockefeller Center. There were hundreds of people skating and even more waiting to get on the ice. Sydney sat on my shoulders and watched them slip and slide across the ice. Our next adventure was to visit the Build-a-Bear store and then, finally, we were off to find a warm spot to enjoy our dinner. We walked several blocks to find such staples as the Disney Store and FAO Schwartz closing early on the day after Christmas. None the less, we drudged on. Our destination was a restaurant called Serendipity III. Upon arrival, just past 6 PM, we discovered a 2 to 3 hour waiting period and elected to eat pizza and Italian food just across the street at Pattie's. After a stolen wallet and then its return and a mediocre dinner we ventured back across the street to the Mecca of all candy shops, Dale's Candy Shop. This two story candy shop had every type of candy I have ever seen. In fact, it is also one of the first I have seen with Hotlix, a tequila flavored candy - complete with worm! We must have spent a little over an hour perusing and munching our way through the store. By the end we had accumulated several pounds of candy and treats for our little twerp. This little trip was certainly the highlight of Sydney's adventure so far.
Today we will be meeting with Dr. Kushner at about 12:30 at the Pediatric Day Hospital at Memorial Sloan Kettering which is just 3 short blocks from our hotel. We will arrive about an hour early to comb through our insurance issues and to get her registered.
I have spent several days refamiliarizing myself with Memorial Sloan Kettering and Drs. Kushner and Cheung. I have always had great respect for these men in the world of neuroblastoma but it was time to really get into their literally hundreds of published works that are available online. I am hoping to come up with an idea of their treatment philosophy and expertise before we meet with them. I have developed a list of specific questions for Dr. Kushner. I am not expecting to hear that Sydney has not relapsed. Even with Dr. Kushner's seemingly strange comment that immunocytology is "experimental science" I have learned that he questions everything about each patient and test. At first it may seem to be "nay-saying" but, apparently, it is just his way of doing things. As it turns out, he has done a tremendous amount in researching these tests and their accuracy and has used immunocytology extensively (among others). To be honest, I am happy with his questioning and it will be interesting to hear what he really believes. Over the phone he was highly suspect of the MRI findings, the blip on the bone scan, and the BMA tests but I am thinking he may be asking the questions more from the standpoint of why were so aggressive instead of whether or not we truly had disease. From what I understand they are favoring a less aggressive treatment approach in many cases. This may very well be the reason that they are using the transplant less frequently in favor of the antibody to mop up minimal residual disease.
In researching immunocytology and the various tests used at Sloan to detect disease in bone marrow biopsies and aspirates, I have learned that they do several things differently. First, they do all of their testing locally. This means the various, and I mean various, tests they use to detect disease are all done in their own labs with their own equipment. This gives them leeway to personalize detection to each patient depending on their needs. Secondly, they take bone marrow aspirates from several more sites (6) and pool them together. At Cook's we take aspirates from two sites. They have found through research that they are more likely to find disease and more of it, to the tune of 3.3 times more. So, don't be surprised if they find more disease in Sydney here. It would not necessarily be a sign of progression - just that there methods and tests are more specific.
Here are a few of the questions of the day.
1. Based on Sydney's apparent relapse after administration of the 14.18 + cytokines, is there any indicator of how effective the 3F8 will be for her? I know they have had experience treating kids that were previously treated with the CH14.18 and others.
2. Is there a test that will give us an indication of the efficacy of the 3F8 on Sydney? I know there is but I don't know whether we will have access to the results or whether we can get them up front. The 3F8 trial that we will be participating in may not give us access to that info. Secondly, the test results may not be available up front.
3. If this is indeed a very small relapse, how would you have treated? Given Sydney's history since relapse, where would you go from here?
4. What is your up front impression of all of Sydney's medical history?
5. What is your goal for treatment?
There you have it. I few simple little questions.
As a side note, I would like to tell you that we are staying warm. We could be New Yorkers with the exception of the strange looks that I get for smiling at people and saying please and thank you. They are a nice enough group of people but I don't know how long I could survive. Out of habit, I smile at people that I make eye contact with and I always say please or thank you whenever I purchase something or somebody offers some help. Based on the expressions of people up here I think they think we are pretty strange. They keep giving me that facial expression as if to say "What are you so happy about?" Well, you see, they just don't know that I have a purpose.
4:20 AM 12/28/2004
I must admit. I was pretty impressed from the moment I walked in. The Pediatric Day Hospital (the oncology clinic) was stacked full of space and amenities. But, what took me by surprise, what absolutely blew me away was - well - the coffee machine. For those of you who know me, you know I like coffee. Good coffee, bad coffee. It really doesn't matter as long as there is plenty of it and boy did they have it. Now, this was no ordinary table top appliance. This was amazing. It had its own floor space. This 3 foot by 5 foot masterpiece of engineering not only produced coffee in abundance but it made each cup of coffee to your exacting specifications. It grinded the beans. It boiled the water. Most importantly, it made coffee, it made it fast, and it made it in adequate supply. If they could make such wonderful coffee in such abundance I was sure that they could also cure childhood cancer. As far as I was concerned, this was a sign of good things to come.
The day hospital was huge and appeared to operate like a well oiled machine which was a good thing because it was bustling with activity. There were families and kids everywhere, each with their own activity and space. Plasma TV's seemed to appear on every wall and, if you could find what you wanted to watch, personal DVD players could be easily found. Another thing that I found to be amazing was that they even had DVD's available of movies that were only available in theaters. I found several kids watching licensed copies of "The Incredibles" and "The Polar Express." If that was not enough, computers and video games with the latest games could be found just around the corner. The playroom was pretty swanky as well. The 30 x 70 foot space was surrounded on two sides by 20 foot walls of glass cubes which were filled with glass bowls and cups. It was quite attractive. When we entered there was a karate class beginning in the center of the room. It was provided by a group called "Kids Kicking Cancer." There were several play areas with toys, games, and activities for all ages. At the time we entered there must have been ten to fifteen families and at least 3 or 4 child life specialists tending to their individual needs. In addition there were craft activities, a video gaming center, a movie nook, an area for reading and playing games, and a couple of toddler/twerp areas. I was impressed but Sydney missed her toys and playroom at Cook's, her friends, and, most importantly, Miss Katie. Sydney had a pretty good time but, to be honest, there were fewer toys, puzzles, and games oriented to her age group in this playroom and she finally settled in on playing with the horsies in the chess set. She really missed her clinic and the wonderful people at Cook's.
Time flew quickly. We were on time for everything and everything was on time for us. Every time we thought we had an opportunity to relax, enjoy our time in the playroom, and talk with other parents, we would be whisked to another area. I was incredibly impressed with the organization. The other thing that amazed me (well shocked me) was that they seemed to know who we were. With such volume, I expected to be another number, just another name called during the day. But, I found our experience to be just the opposite. There was no name calling, no "Sydney Dungan please step forward." Every time we were needed it seemed like a new person we had never met before would step up and say, "Hi, Sydney! It's time for your _______." I was shocked and it was a little eerie. With my "individualism," I am used to standing out in a crowd. Okay, fine, I seem to have a knack for being somewhat of an attention hog. But, the point is, they had never met us before but treated us as though they had known us for years. In such a big, brand new, high tech place we felt, somehow, cozy and warm. In short, we miss our Cook's and our people, but this was also a uniquely great experience. There was lots more of the day hospital that we were never able to see. I imagine we probably saw about a quarter of the clinic (a.k.a. day hospital) before our time was over but you must realize, when about 90% of their treatment is on an outpatient basis you can understand the need for such an incredible facility and coffee machine.
After a finger poke and some more coffee we were whisked back to meet with Dr. Kushner. Sydney was shy but warmed up rather quickly. Dr. Kushner was academic, thoughtful, and introspective. We spent the better part of an hour with him asking questions and examining Sydney and her history. Here are the nuts and bolts:
When asked his impression of Sydney and her status, he declared her as "talkative". Yes, my queen twerp, jabbered and sang through most of our meeting. When I clarified my question to ask his impression of Sydney from a medical standpoint. He gave us some answers we did not expect. First off, on the question of relapse, did she or didn't she. He said, simply, " I do not know." As discussed earlier, he is highly suspect of the tibia. He gave us several examples of NB children with tibia abnormalities that did not turn out to be disease even when everything pointed to it. I think one of the main differences in the opinions on the tibia between he and Dr. Eames comes down to the radiology report. Cook's MRI read something to the effect of "Definitely Abnormal - it's cancer." But, the Sloan radiology report just said "Definitely Abnormal - could be anything." For Dr. Eames I believe this came down to "highly suspect" and to Dr. Kushner a "possible maybe." Now, on to the immunocytology report. Dr. Kushner did not feel that the positive 27 cells found by immunocytology was necessarily NB. He found this to be another "possible maybe." He has been confronted with this type of finding before in post antibody kids with morphologically negative and immunocytologically positive marrows and some did and some did not relapse. For some children with this type of finding it can actually be an immune response that is a result of the antibody treatment. He said that if you polled the oncology world with this type of finding he felt that most believe or would believe that a immunologically positive marrow would eventually lead to relapse but his findings suggested that it certainly was not always the case. Dr. Kushner felt that we had two "possibly maybe relapse" findings but he did not feel that they met the strict definition of a relapse. He felt that a good question to ask would be "What does Dr. Seeger at Dr. Seeger's lab feel the findings are indicative of? What does Dr. Yu (the program director of the 14.18 trial) feel about the results?" The bone marrow aspiration that will take place today could give us an answer regarding relapse. Please pray for clean marrows.
Another surprising discussion regarding Sydney was her prognosis. Dr. Kushner felt, that even given her original finding of N-MYC amplification ( a biological marker and an indicator of poor prognosis), her long term chances were pretty good given her response to and toleration of her upfront treatment. NB kids with this biological marker that have responded as well as Sydney has to treatment typically fair well. This statement, of course, was assuming that Sydney had not relapsed. If she has relapsed her prognosis is not good, not good at all.
Lynley then asked a very good question. Given everything that has occurred since October 13th (the day we first got the inkling of a possible relapse) what would he have done differently. He said, simply, he would have waited to treat. He would have rescanned in two weeks or, at most, a month. He would have watched her closely for clearer indications of disease or lack there of. So, was our team wrong? Well, no. You see, it is a timing issue. Here, Dr. Kushner has the ability to get almost immediate test results. He does not have to wait long for an answer. If he has a question, he can generally get an answer that same day. They have the money, the focus on NB, and the technology. In our situation we (including our team at Cook's) were forced to wait valuable weeks for answers to our questions. We had to make decisions in somewhat of a vacuum. From our perspective and timing we made the right decisions, the only decisions available to us. Based on the "Cancerous MRI", bone scan, and anticipated morphologically positive marrows we had to treat. We had to get in front of the disease. Our aggressiveness, our "high" dose approach was a correct response given the information we were dealing with and I am quite sure that no one, at that time, could have convinced Lynley and I differently.
For better or worse this has led us down a path. Even though we hope to not find any disease, it is likely that Sloan and our team up here will elect to suggest treatment with the 3F8 antibody. It is the case of - it is better to be safe than sorry. We may never know (and hopefully won't) that Sydney relapsed for sure but given the aggressive nature of the disease, her history, and the biological characteristics of her disease treatment may be the very thing to give her life and to sustain it. 3F8 treatment may "cure" her, may stave off relapse, but most importantly, will give her a chance at survival. If they do not find disease, our options will most likely be 3F8 or nothing. From an immunosuppressed (she has very little immune system left after the last two Topo-Cyto-Vinc chemo cocktails) standpoint, the timing of 3F8 is now or possibly never. Further immunosuppressive chemo further down the road would come at great risk of secondary cancers such as leukemia.
There were many more questions and answers but it is once again time to focus on my purpose. I will try to write more later but, if not, you can rest assured that I will be as long winded tomorrow.
5:07 AM 12/29/2004
Okay, perhaps in all of my exuberance I may of over exaggerated a few things. Upon reflection and further investigation I have discovered that I may have made things better than they actually were. As it turns out, the coffee maker is a little smaller than I had first remembered. It, in fact, is a counter top appliance and it only measures about 18 inches by about 3 feet. But, the fact remains, it is an excellent producer of coffee. So, all in all, although it did not meet my size remembrances, its gift of quick and fresh nectar of the gods still rings true. In addition, the new movies, the ones in theaters, - you know - the "licensed" ones. Well, as it turns out, they might not be licensed in this country. So forget everything I said about the movies. In fact, let's just act like I never brought it up.
Everything else though, from the architecturally appealing walls to the wide open spaces, continues to ring true. I am still amazed by the organization and the fact that everyone seems to know who and where each and every family should be and what they should be doing. The secretaries (if that is what you call them) are in constant motion and seem to be on top of every action and reaction. Yesterday the bone marrow aspirates were running about thirty minutes behind. We were made aware about fifteen minutes before our scheduled aspiration and told to continue to enjoy the amenities. We were forced to wait but 30 minutes in oncology time is like thirty seconds in real life. As a family in the NB world not only do you get the benefits of appreciation of life and respect for it but you also get the gift of being a professional waiter and this, well, this does not even really count. On the efficiency scale of oncology offices (especially considering the volume) they still receive a ten in my book.
As we are becoming more familiar with Sloan, we are learning a lot about their system, the routine, and how they do things. In some ways they do things that seem to make more sense than they we have become accustomed to at Cook's but I would also be very quick to point out (not to them) that there are many things done a certain way at Cook's which seem to make much more sense. I don't really know if anyone cares but it has really been a learning experience and I think a valuable exercise in patient care. In the end I like both facilities and routines. Both have some very special but different ways that they do things. I am meeting new people (nurses, doctors, practitioners, child life specialists, etc.) but Lynley, I, and Sydney sure miss the wonderful people we left behind.
Sydney's aspiration went wonderfully. As explained before, they aspirate 4 sites, two in the front and two in the back. Immediately after the procedure she complained of a little pain but we never heard of it again. The whole aspiration/anesthesia experience was incredible and fast. The oncologists up here really seem to be lucky. Because of the volume and the scheduling they have an anesthesiologist right there at their beck and call. Once called you take your child into the procedure room. I was carrying Sydney, fully clothed. As I stepped into the room the anesthesiologist asked the routine questions. He then asked me if I was ready. He gave Sydney a dose of Propophol and Sydney went to sleep (within seconds) in my arms. I plopped her down on the table and we left the room. Dr. Kushner then went to work. About 15 minutes later Sydney was wheeled across the hall to recovery. The doctor and nurse stepped out of the room to tell us that everything went well. The recovery team redressed her (she was obviously undressed at some point) and called us in. We chit-chatted with the recovery nurse and about ten minutes later Sydney was awake. Minutes later I carried her back into the playroom. The whole process, from beginning to end, took us about thirty minutes.
Later in the afternoon we met with Dr. Kushner once again. Sydney was still a bit ornery from the Propophol but a hefty prescription of Sponge Bob stickers from Dr. Kushner put the kibosh on too much twerpfulness. He is really generous with the stickers and Sydney was all too willing to take advantage. We will need to replenish his sticker supply today as I do not know that our insurance would cover such sticker over indulgence. We may have to apply for Medicaid to cover the costs of her obnoxious sticker habit.
Our discussion with Dr. Kushner centered mostly around the 3F8, the research, the method of action, and the routine. Since I discussed much of this in our first go around with the antibodies I will spare you the discussion here. Let us just say that the administration of the 3F8 is much more benign than what we had become accustomed to with the ch14.18 antibody.
The discussion quickly turned to Sydney and I little bit about "what if" (i.e. what if they found disease, what if they didn't) and what does it all mean. Let us just say (Dr. Kushner included) that we all hope that he does not find disease. The difference to Sydney will be life and death. If this was not relapse we have a good prognosis. We will have to make some tough decisions regarding further treatment. Remember, in this scenario (the best case one) we will never know whether she truly relapsed or not. So, we will continue to treat her with either low dose stuff like Accutane or, perhaps, the 3F8. If she did not relapse and the tests that showed abnormality were really showing an immune reaction we have effectively obliterated her immune system and it is likely that we have undone any of the benefits of her previous antibody therapy. So, if we want to continue for her to have the possibility of some kind of NB immunity we will need to re-pursue an antibody treatment. Now, on the other hand, if he does find disease or this was a relapse, Sydney's prognosis is not good. We could achieve a second and even possibly a third remission (buying us time to find a cure) but the overall chance at survival is slim to none given her particular disease and genetic characteristics and given current medical technology. So, in short, we wait for an answer which, for us, is likely the difference between life and death.
Once again it is time to refocus on our purpose. We will be taking the little mashugana to Times Square this morning for a little site seeing, toy shopping, and sticker purchasing. Our MIBG is scheduled for late this afternoon. This will be our last full day in New York before we head back.
2:51 AM 12/30/2004
Good morning! Before we left New York I wanted to let you know that the preliminary look at the MIBG scans was negative. It is time to pack. My purpii and I have an early flight.
Until the next time......