Day by Day

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Day by Day

A day to day by-play of Sydney's medical progress (not to be taken as a serious set of literature, and we are not responsible for any misspellings, typos, or problems with present and past tenses :-). To check out blood work progress, click here Blood Work

INFORMATION AFTER AUGUST 10TH CAN BE FOUND IN DAD'S DIARY

Sunday, August 10, 2003

Day 4, Round 3 Chemo - Sydney is still in good spirits, but it seems that the Zofran which has been keeping her belly happy is no longer effective. (We have noticed in the past it seems to only work for about 3 days). We are now trying other anti-nausea drugs, and they seem to be helping. She started her "puke cough" last night, and actually started throwing up this morning. After switching drugs however she has managed to eat two whole helpings of Whataburger hash browns:-). Today will be our final day of chemo, and then she will be on recovery fluids for at least 12 hours. Depending on how hydrated she is, and how much she is keeping down, we will probably be able to go home Monday morning to recover. Of course, we will also have to start GCSF shots again 24 hours after the end of chemo. We hope for a relaxing Sunday.

August 2-3, 2003 (The Weekend!!)

Please see the great news in Dad's Diary!!!! The weekend started off great Friday evening with Dr. Eames wonderful phone call and test results. The weekend went great, we all relaxed and did normal things (probably the first time since Sydney was diagnosed). Sydney started out the weekend with raccoon eyes and looking pretty dehydrated, but has steadily filled herself back up throughout the weekend, and now looks much healthier. We went to feed the ducks, to the zoo, and had close friends over Saturday night. Wow, it was such a NORMAL weekend, it was exactly what we needed. This week should be relatively calm (knock on wood). We have nothing scheduled until clinic Thursday morning, and then we go in for round 3 of chemo. This time it is different drugs, and it takes 4 days instead of 3, so we should be in the hospital until Monday. Please keep your prayers coming for this next round! Unless something changes, this will be the last update until Thursday. God bless you all! Your prayers have helped us win Round One!

July 31st and August 1, 2003 (Late again:-)

Well, yesterday turned out ok. A lot of waiting to see if the second stem cell collection got us enough (yes, she did it, we now have 11 million stem cells!!!!). Once we got the numbers back, Dr. Eames pulled the new catheter, we re-bandaged everything and Sydney had a really good bath. We packed it up and headed home. She slept ok last night, not great, but not horrible. It seems the first night to the hospital and the first night home is always an adjustment.

This morning we headed to the CT scan and bone scan. Mark was in Dallas but best friend Jenny (Aunt Jenny) and Mimi were there to help. We waited and waited and waited. She could not have any food or drink since last night, and we quickly reached to point of frustration, but overall she did really well. She had to drink apple juice that contained contrast for her CT scan, so they came out and said they were going to bring it. 30 minutes later, they still hadn't and I asked... 30 minutes later the nurses came out and had a discussion about how each thought the other had given to her... I guess all and all it wasn't a bad thing, because the CT scanner was broken... Anyway, around 1:15 pm (4 hours after we got there), they called us back for the bone scan. Because we didn't think at the time that we could get both tests done, I had asked that we try the scan without sedation (I didn't want to get her sedated today, then have to turn around and do it all over again on Monday, especially after our last experience on Tuesday). It is a pretty short test, so I had high hopes. Mark arrived just in time, minutes before the bone scan. Sydney went through with flying colors, with the exception of the few moments we had to hold her head still.

We went straight from the bone scan to the anesthesia area for the CT scan. (They finished repairing it right before we went for the bone scan). We met with the anesthesiologist and nurse anesthesiologist. They talked about sedating Sydney, including tubing her. I argued to a certain degree and shared all of my concerns. The anesthesiologist decided after hearing how Tuesday went to check her platelet count. I stepped out of the room, and when I came back, they had decided to go for it without anesthesia. YEAH!!!! (They were so backed up because the machine had been down, they didn't want to have to wait on blood results:-) All in our favor:-). Sure enough, 20 minutes later, Sydney was finished and went through with flying colors. In fact, they said Dad was particularly wonderful, and that next time we were to tell everyone that she can come on through without sedation!

Now for the good news... During the bone scan, the radiology technician said that he could not believe this was the same child he had seen 6 weeks ago, and asked if we had already had surgery to remove the tumor. We took this as a very good sign. Dr. Eames should call this evening with the official results of both tests. Keep your fingers crossed!

July 29, 2003 (Tuesday) and July 30, 2003 (Wednesday Morning)

We arrived at the hospital around 6:00 am for pre op, expecting a normal day. It turned out to be as far from that as could be....

Pre-Op and Surgery went ok. They placed the double lumen catheter, and did a double bone marrow biopsy and aspiration. Both our surgeon, and our HO doctor came out to talk to us and tell us all was well. After that the day went down hill.

Sydney was inconsolable and out of control after recovery, so they had us come back. We found out once we got back that after she had come out of anesthesia, her biopsy sites started bleeding again, so they had to hold her down to apply pressure and reapply her bandages. Needless to say, holding Sydney down is never a good idea, so she was fit to be tied when we got back. They needed our help to calm her down so they could take an xray and confirm the new catheter's placement. We did that, and then we began the process of moving upstairs. We originally thought we were going home after sx, but her labs taken earlier indicated that her WBC were way up, and her CD34 count (stem cells in the blood) was 39, also very very high - it was time to collect!

We moved up to the bone marrow unit for collection. By the time we got up there, Sydney's side was soaked in blood from her new line site. I believe Mark has gone over all this, but basically, we got it all cleaned up, and it was soaked again within 20 minutes. They sent off labs to check Sydney's platelets etc... In the meantime, we got the blood stopped and Sydney took a nap. When she woke up, I changed her diaper and found it full of blood, this time from her bone marrow biopsy site. We ended up starting what would be about a 2 hour marathon of blood work and applying pressure to the biopsy site until it stopped bleeding. (Poor Mark, he sat with her on his lap and applied pressure for 2 hours!).

Dr. Eames sent off blood for a clotting study during this time because we had gotten the platelet and hemoglobin counts back and they were fine. The PT and PTT (clotting) results indicated that yes, Sydney was definitely having trouble clotting. Because she was in good health before all of this, and her platelets were fine, the only other explanation could be Heparin (anti-coagulant to prevent clotting). Evidently, they use high dose heparin in the new catheter lines to prevent clots. It actually is loaded into a chamber on each line, and it has to be withdrawn before each use, and then loaded again following use. They called surgery to see if perhaps some of this had accidentally gotten into Sydney. There were no confessors, but “the labs don’t lie”, so we operated under that theory and they called for protamine which is used for heparin reversal.

The afternoon calmed down again somewhat, the bleeding was stopped, and we were started stem cell collection. The medical technician, Mitch, and his $65,000 collection machine showed up around 5:00?? to begin the whole process. Everything ran pretty smoothly for about 2 hours until about half way through the collection. At this time Sydney’s blood pressure began to drop. We had been warned of this… the solution used to prevent blood from clotting in the collection machine contains chemicals that evidently can lower calcium levels which can then cause blood pressure to drop. They can give calcium to help reverse the effects. They sent off to test Sydney’s calcium levels, and they were low, but not low enough to explain the drop. And it kept dropping, and dropping… If I remember correctly, the lowest was 75/37 or something very close to that. Dr. Eames came up from another patient in ICU, and called for fluids and at the same time, we finished up stem cell collection. At the end of collection, they give back Sydney’s red blood cells, so we were hopeful this would also help bring her bp back up.

We got fluids on board, and the red blood cells. Within a few minutes, her bp was on its way back up, but then we started noticing Sydney’s face was swelling. Within another 20 minutes or so, she started having difficulty breathing, and her oxygen level began dropping. She obviously wasn’t handling the fluids very well. At this point, her room turned into a mini-ER. I’m not sure about the exact order of events, but this is it to the best of my recollection…She was put on an oxygen mask, which did not go over well and got her completely riled. While dealing with that, and trying to redo her bandage, she started gulping, her O2 rate when down to 73, and her lips turned blue. I was trying to help hold her, and could feel a rattle in her chest. Dr. Eames listened, and called for a stat chest x-ray, and for an albuterol breathing treatment. They were up very quickly. The chest xray looked fine, and the breathing treatment was given. Sydney responded very quickly to this treatment. They added Lasix (to draw off fluid), and within another 30 minutes, Sydney’s face was not as puffy, she was breathing ok, and her bp was stabilized.

There are still not any perfect explanations for all of this. I believe it all stems off of the “lost heparin”. Her blood counts this morning look good, she’s happy, perky, and can’t stop eating to make up for missing meals yesterday. Her platelets are a bit low, so she’s going to get some more. The plan for today is to get her stem cell collection counts back, and if they are good, we will not have to do another collection and can remove that darn catheter. Dr. Eames wants to watch Sydney for another day, so we will spend another night here. Since we are here, it looks like we will go ahead and get another bone scan and CT scan done to check on Sydney’s progress. If for some reason we didn’t get enough stem cells, we will collect again this afternoon.

Please pray for a nice boring afternoon and evening:-)!!!!!!!!!

July 28, 2003 (Monday)

We are off to clinic. This morning we will test her blood work again, and if her white counts are on the way up, we are scheduled for surgery to put in her double lumen catheter Tuesday for stem cell collection. More updates when we get back...

Well, we are definitely on for surgery tomorrow. We are supposed to be there for pre-op at 6:00 am and Sydney is currently scheduled for surgery at 8:00 am. (Yeah, we love early... It's hard to explain to a 2 year old why they can't eat and drink!!!) They will place a double lumen catheter, and do another bone marrow aspiration. Both procedures are supposed to be very quick, possible total turn around time around an hour. This is all outpatient, so we are expected to return home later that day.

Sydney's blood work this morning in clinic indicated very low platelets (see Blood Work), and considering her upcoming surgery as well, we did a platelet transfusion. We spent from 8:45am until 1:15pm in clinic. They have also upped her dose of GCSF by more than double. This will really cause her white blood cell count to jump, and will also increase the amount of stem cells in the blood. Unfortunately, it will also increase her bone pain.

The plan is... Catheter placement Tuesday, clinic visit at 7:45am Wednesday. They will check counts, specifically CD34 which indicates the amount of stem cells in the blood. The higher that count is, the better. At a certain level (still to be researched) we will then move to stem cell collection. When this happens we will be admitted to the hospital, and Sydney will be hooked up to a machine that removes Sydney's blood by one of the double lumen and by apheresis takes out the stem cells, then returns the rest of the blood through the other lumen. This takes about 4 to 6 hours a shot. We will do this routine Wednesday, Thursday and Friday, or until they have harvested at least 1.5 million stem cells. Best case scenario, it will be in one day, worst case, three. Each morning we go to clinic first thing, get Sydney's blood test, and go from there.

Keep us in your prayers:-)

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Sorry, dropped the ball again:-) Here's the weekend update...

Friday, Saturday, Sunday July 25-27

The weekend was interesting. One thing we learned was always be prepared to run to the hospital at the drop of a hat... Sydney started looking pale, and stopped eating and drinking well Friday evening. We called the hospital, talked to the Oncologist on call, and it was decided we were going to run up there for a blood transfusion. Since those take several hours, we were offered the deluxe accommodations of 3rd Floor North. We arrived at our second home, and a couple hours later had Sydney hooked up for her blood transfusion. Sydney had a horrible time... it was already way past her bed time, and every time she almost fell asleep, it was time for a blood pressure check etc... The last check at around 10:00 had her head spinning, and green stuff flying out of her mouth. I have NEVER seen her have a fit like that one. We eventually got her calmed down, and with the aid of Vistrail, she sleep peacefully the rest of the night. It was truly horrible, and I can guarantee that we will do everything in our power from now on to ensure that an episode like that one does not happen again!

Sydney was a new person Saturday. She had her batteries recharged, we went home, and life was good. Her blood work while in the hospital overnight indicated that her white blood cells had bottomed out (WBC 0.1, or 100 white blood cells). Although this is bad, it is good, because it means that hopefully they will be heading back up in time for the stem cell collection beginning Tuesday.

We played, we relaxed (I worked, thus no update:-), and generally had a good weekend. Sydney did fine Saturday and Sunday... No fever, no mouth sores so far.

July 25, 2003 (Friday)

Sydney is still doing great. Yesterday we went to clinic, expecting a blood transfusion, however her counts have not fallen low enough yet. (See blood work). She is drinking and eating so well that we have stopped the nightly fluids (we may start them back over the weekend if necessary). She seems to be having nightmares during the night the last 2 nights, so we haven't been sleeping as well, but we're sure that will all work out as well. They had hoped that her counts would have dropped and now be on the rise in preparation for next weeks stem cell collection. We had been slated for Tuesday for surgery to put in the catheter, however, they may move that back a day or two now (this isn't a bad thing). We will re-evaluate on Monday. Until then, we are going to continue to enjoy our happy times with Sydney.

July 22, 2003 (Tuesday)

What a difference a night of fluids makes!!!! Sydney was great today. She laughed, she played, she ate, she drank, she took all of her meds without a fight, and she kept them down. And she still has hair! We are starting to think that they really just gave her water, not chemo! I (Lynley) know we are still a few days out from the "bottomout", but we will take it, this is wonderful. If we can have days like today, I know we can handle the really bad days.

We started her shots last night. It took us over 3 hours last night to get her shot done, her meds done, a dressing change completed, and get Sydney hooked up to her fluids for the night. Most of that time Sydney spent screaming... This is really hard, but not nearly as hard as watching her be sick and not being able to actively do anything about it. Tonight (Tuesday) went much better, and I'm sure we will improve each day. I wish that I could take every shot for her, suffer through her bandage changes for her, and take all the bad away.

July 21, 2003 (Monday)

Sydney is rather puny today, and looks like she "shrunk" overnight, but overall is doing quite well. No mouth sores yet, and she is still eating and drinking well. We are quite astounded at her response so far. She loves being home, and I think that maybe that has made all the difference. Tonight we start her back on fluids, and on the Growth Factor shots. She slept well, and all night long last night, so we will see how tonight goes:-)

July 20,2003 (Sunday)

We are home again!!! Sydney finished her 2nd round of chemo at about 3:30 today, and we left the hospital almost immediately after. She seems to be doing quite well, and hasn't even thrown up in 24 hours. Her counts have begun to drop (I don't have the exact counts, but everything but platelets are low, but not transfusion low), but we have not hit the lows that we expect later this week. We so far have held the mouth sores at bay, but we expect them soon. (The tissue in your mouth, esophagus, etc.... are some of the fastest growing in your body, so the chemo attacks those causing blisters and sores... The majority of Sydney's pain from chemo comes from these). We have gone home with anti-nausea medicine, mouth care, and antibiotics. Starting tomorrow we will be in charge of fluids over night, and GCSF shots (growth hormones to help build white blood cells). We go back to clinic on Thursday morning to check blood work and probably receive a transfusion. If there is any fever or severe pain, we go back to the hospital ASAP. Next week, probably the 29th, Sydney will go back into outpatient surgery to have a catheter put in for stem cell collection. This collection will take approximately 3 days, so we will be in the hospital again for that (we need about 1.5 million or more stem cells). These stem cells will be used for stem cell rescue after her mega dose of chemo several months from now.

I must say that it seems very surrealistic to be home so soon after chemo (but don't get me wrong, it is VERY nice). Sydney perked back up as soon as we were home, and has been eating and drinking well, so it seems to be the right choice. Please keep the prayers coming!

July 19, 2003 (Saturday)

I updated yesterday, but evidently it did not post. I apologize! Sydney is now in her 2nd day of her 2nd round of chemo, and is doing surprisingly well. Yesterday you could not have told that she was receiving poison in her veins. She played, she ate and drank well, and we all had an enjoyable first full day back in the hospital if there is such a thing. Last night she began to vomit again, and I didn't have high hopes for the day (Saturday), but so far she is doing really well. She has not vomited since the night, and has actually eaten quite well. She is tired, but in great spirits, and is taking a good long nap as I type.

Dr. Eames says unless she develops a sudden fever, we will be leaving tomorrow night. She should finish her chemo around 4:00 and we should be able to leave sometime around dinner. Mark and I will be responsible for most of her post chemo care including fluids at night, her GCFS shots (growth factor to promote bone marrow/white blood cell generation), medications, bandage changes and such. To be at home we will do about anything. Fever or other sudden illness will return us to the hospital, otherwise we go Thursday morning to the clinic only for a status check.

More later....

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SORRY!!!! We enjoyed being home so much, and there wasn't really anything medical to report, so we didn't update this page.... It is now Thursday July 17th and we are back in the hospital, and as of 5:00pm have started our 2nd round of chemo (same 3 drugs as before). The plan is a much shorter stay this time. We will doing much of the care at home following chemo, with clinic visits to check on blood work. Right now Sydney is doing fine, but you can tell she is stressed out being here again. Overall, we are all upbeat and ready to get one more round under our belt.

More tomorrow:-)

July 14, 2003 (Monday)

We are home!!!!!!! It is wonderful. Sydney is so happy to be here, ran around chasing the dog, the cats, driving the car that she got for her birthday, and she even ate (yes, ate!!!) in her high chair. We just put her down for her nap, and are paying the price for 3 weeks of 24/7 with Sydney... She is SOOOOOO mad to be alone. We hope that after this first test we can slide back into our old habits somewhat.

We have home health coming tonight. Sydney will still have to be on fluids at night, and we will do the dressing changes and heparin flushes daily. Other than that, we are free, Sydney is free, and we will appreciate these few days away like we have never have appreciated any other.

We return to the outpatient clinic at 8:45 Thursday. The spell will be broken... If her blood work shows everything is ok, we will be admitted and begin the 2nd round of chemo Thursday afternoon. The doctor expects this round to only take us 5 days (3 days chemo, 2 days recovery) so hopefully we will be returning home again next Monday or Tuesday (please say your prayers!).

More later....

July 12, 2003 (Saturday)

Sorry for the delay... Now that Sydney is feeling better, it's a race to keep up. There will be much more to come once we get home on Monday.

July 11, 2003 (Friday)

Sydney is in good spirits, and her white blood cells are up again!!! Keep thinking "eat" "drink", maybe we will be able to go home!

Dr. Eames came in this morning to give us the good news... Barring in major changes in Sydney's health, we're out of here on Monday!!!!! She's off most of her meds, we are going to switch to oral antibiotics, and we will worry about eating as we go. Thursday we will have to be re-admitted for her next round of chemo, but we should be home for 3 days. And please, please keep your prayers going, because if Sydney reacts as expected and stays relatively healthy, we will only be in Thursday through Sunday for chemo, and then back home on Monday!!!!

Thank you all for your support and prayers!!!!!

July 10, 2003 (Thursday)

Sydney's white blood cell count is up again today, in fact it is back to normal. This means FREEDOM!!!!! We are still in the hospital because she hasn't eaten, IV antibiotics, and pain meds. As soon as we fix those, we are out of here. Of course, that may not happen for a week, and next week we should begin our next round of chemo.... All in all, our spirits are up, and things are going great.

We went to the playroom, we went outside and watched the water fountains, and we played with Truman in the atrium. Sydney would get frustrated by her "noodles" (IV lines), but all in all, we had great fun! Sydney didn't want to go to sleep for the rest of the day!

July 9, 2003 (Wednesday)

Sydney's white blood cell count is WAY up!!!!!! YEAH!!!!

What a day, we went to bed exhausted. Our two year old, I stress TWO year old is back. We had fun, we had temper tantrums, we had wagon rides.... How in the world do you entertain a child who doesn't realize she's sick, and no longer feels it, in a 10x10 cell?

July 8, 2003 (Tuesday)

Sorry for the delay folks, we had a busy day, and Sydney kept us jumping. Everyday she seems to improve even more. She was in good spirits, even started dancing with Cinda (her favorite care nurse) to "Go Sydney, go Sydney". She was so happy and we loved every minute of it. Every time we stopped, she would holler "more, more!!" She took an ok nap in the afternoon, and then Dr. Howry came by. She was a little cranky (just woken up cranky) so we didn't flirt as much today. Dr. Howry had some troublesome news however... One of the blood cultures they did after her fever on Monday came back positive, so they did another culture to rule out contamination. If that one is positive, we are in for another 10 days of IV antibiotics. This is good and bad... It will delay her next round of chemo (which is a mixed blessing) but it may also mean we are here that much longer. We did discuss doing IV antibiotics at home (it will be possible). Her blood counts are continuing to rise, which is very good news indeed (see blood work page).

All in all it was a good day. Sydney had a restless night, but we did fit some sleep in.

July 7, 2003 (Monday)

Sydney slept all night long, and then slept late this morning ('till nine). Her blood work is in and it looks good. Even her white blood cells are up (they are still critically low, but they're up!!!). She had her usual pain and vomiting upon waking, but now seems content to watch her movies and play in her crib.

Sydney really had a good day overall. This afternoon we met our other doctor, and Sydney went nuts, she loved him! It was actually disgusting:-). She smiled, she flirted, played peek-a-boo, blew kisses... It was crazy, I haven't seen her like that in a long time and it was refreshing to say the least. She wore herself out, and fell asleep around 6:00. Of course, now it's 10 and she's back awake...:-).

The raw places on her chest seem much improved. I think the sores in her mouth seem better. She has shown no further interest in eating since several days ago, but I'm sure that will come with time. She ran a fever today... all her cultures are negative, and but they say there is evidence that fever can happen as blood counts come up, so it actually may be a good sign.

Off to battle "I'm not sleepy"....

July 6, 2003 (Sunday)

Sydney slept through the night, but woke up several times when they were hooking up her blood transfusion and adding/removing her other nightly jobs. At 4:00 am she was running a 101 fever, so we gave her Tylenol, which she then threw up. Around 7:00 am she woke up and threw up again (this is becoming a morning ritual now). Her color is much better, and she seems in good spirits. The transfusion helped, and her hemoglobin and hematocrit are back to normal levels (see blood work page), however her platelets have dropped again. We will have a lot of questions for Dr. Eames this morning... why anemia all of a sudden, why the fever over night when she hadn't had one in days (transfusion?), low platelets etc... Boy, and she thought Sunday was the day of rest:-)

Sydney had another platelet transfusion and had a very low day, she slept most the day, but didn't seem to be in any real pain.

July 5, 2003 (Saturday)

Today was another day in the hospital. All was quiet, really no one here. Sydney did really well this morning, including walking down the hall. She fell asleep around noon, and kept sleeping, and kept sleeping.... Around 4:00 she had to get her GCSF shot (growth factor to build white blood cells) and she woke up a bit. I could tell she didn't feel well. About thirty minutes later she threw up, and there was a lot of blood in the mucus. After talking with the nurse, we decided to look in her mouth to see if we could find any obvious bleeding sores. There were none, in fact, it looked better, but I was shocked by the color. (Now, I know it's not really applicable, but I have seen many cats and dogs with the same lack of color with low hemoglobin and hematocrit (anemic), and I knew this wasn't good). I asked that they draw blood to get a quick count run. Sure enough, both were low (why?), so she is having a transfusion as we speak.

She may perk up tonight after the transfusion... Should be interesting to see how sleep goes tonight:-)

July 4, 2003 (Friday)

Fourth of July! Kinda bittersweet. Sydney slept well last night, so we did too. She seems very comfortable today. We did another dose of Ativan this morning, and enjoyed our Sydney again for a while. She's now getting her first Platelet infusion. She has vomited a couple of times this morning, and it now has blood in it (most likely from the sores in her mouth and esophagus, low platelets etc...).

Her lab work from yesterday showed very low platelet counts, and her WBC count is still at rock bottom. We have started a new blood work page to track her progress. Please check Blood Work for the latest results.

Sydney did so well today, we thought she would never go to sleep. We went for a wagon ride, we played, we talked, and in general had a good day. The sores on her chest look a little worse, but until we get her WBC count up, they aren't really going to improve. Sydney finally fell asleep around 7:00pm. Unfortunately, it's another typical day in the hospital, the fourth of July not any different than any day before, but Sydney is in good spirits, and is improving, so that's all the holiday we can ask for.

July 3, 2003 (Thursday)

We slept all night long, all of us!!!!! It was a very busy day. The Grandmothers, Martha, Sydney's Nanny, and Lynita, our dear friend, and in this instance also our translator, all attended Central line (CVC) class so that we will all be prepared when Sydney goes home (Mark went last week). Came back from that and actually did the real dressing change, and then we got a call that Sydney would soon be called for her MIBG test (see yesterday for details). Of course, that didn't happen on time (hospital time:-). We ended up going around 2:00. We got downstairs and met with the anesthesiologist and he "flunked" Sydney for the planned general anesthesia due to her vomiting and low blood counts. We decided on a IV sedative instead (Vistaril which we have used before). We got her into the Nuclear Scanning room, and tried to calm her down (she had to stay still for about 20 minutes). I won't go into great detail, but they really scared us by not really knowing which port to use, they changed the dosage at the last minute, and then they surprised us with a last minute drug we didn't know anything about, nor expected. They shot Sydney up with Propofol (we didn't know that at the time), and her eyes rolled back in her head and she was out. She was out so fast, both Mark and I had a very shocked look on our faces I'm sure... They immediately suggested that we step out of the room. The other concerning incident was the dosage on the "milk of amnesia" as they called it later. By the time the anesthesiologist said 20 cc's, the lady had already pushed about 30... Needless to say, if we had known the drug, and expected the reaction, we would have been fine, but instead, we sat biting our fingernails for the next 30 minutes until Sydney was back with us. I left Mark in the waiting room for a minute and called a good friend, Amy Sheppard (she's an anesthesiology nurse) and she helped us feel better by explaining the drug and its side effects. I'm not sure how we would have dealt with it without her.

We got back to the room and it was a relatively normal afternoon. The MIBG scan results were back in a relatively short time span (a couple of hours later). The good news is that it worked, and Sydney's cancer showed up. This means we can use this test as a marker in the future to indicate progress. The bad news wasn't really bad news, but was bad expected news. The sites of Neuroblastoma indicated by this scan was of course her tumor, the right shoulder, and oddly, NOT her left femur. One spot did show up that has not shown up on previous bone scans or X-Rays, and this was in her lower right leg. This of course does not change prognosis or treatment, but is something we can watch on the way.

Because of all of the excitement, Sydney missed a few pain meds and was uncomfortable during the afternoon and evening. We got it back under control, and at this time is resting comfortably.

We had labs today, forgot to get a copy, maybe tomorrow. Sleep well:-)

July 2, 2003 (Wednesday) (By the way, we write the day so we can remember:-)

It has been our usual morning of dressing changes, vomiting and diarrhea. Sydney still seems uncomfortable, but is definitely getting more spark back. She has lost another pound over the last 2 days, and is still on IV nutrition and IV antibiotics. She has her MIBG (http://www.pennhealth.com/ency/article/003830.htm) test tomorrow, and has been taking drops for that. We don't have the labs back yet, but should have them later this morning. BP has been running high, but have not hit the parameters that the doctor has set for more Procardia.

Labs Today:

White Blood Cell (WBC) 0.1 (Low, Bottomed out), Red Blood Cell (RBC) 3.34 (low), HGB 9.9 (low), Platelets 62 (very low) (No LDH today).... Another transfusion coming up:-)

To fight the vomiting and pain, we switched up things a bit, and put Sydney on a Fentanyl IV pump for continuous dosing, and we tried Ativan again for nausea/relaxation. She was so happy on the Ativan. We played, we sang, we laughed, and it was almost like we had Sydney back again. She even took two sips of grape juice!

The IV Fentanyl pump was hooked up around 5:00 pm, and this really seemed to work well. Sydney rested comfortably, and so did we.

July 1, 2003 (Tuesday)

Sydney did ok through the night, but woke up to every bp/temp check through the night. She seems to be doing better, but her bp went up this am (147/99) and we had to give her Procardia to get it back down. We have no idea at this time why, but it will certainly be a question for Dr. Eames later today.

Sydney's high bp continued through the day, so we ended up dosing her 3 or 4 times with Procardia. She has also continued vomiting and with the diarrhea. Overall however, she seems to feel a little better. The doctor says that the tumor is softer, which is an excellent sign. Sydney is now on 2 IV antibiotics, as well as one oral antibiotic. The sores on her chest and central line are about the same.

Sydney had an uncomfortable night. We can't seem to find the right time/dose of meds to make her comfortable for long. This will be something else to discuss with the doctor.

June 30, 2003 (Monday)

Sydney just received a Vistaril/Fentanyl cocktail and seems to be resting comfortably. It seems with the Morphine class drugs though she does not want to be touched, she's back to "Go away" again.

Lab Results this am: WBC 1.9 (Low, Norm 5.5-15.5), RBC 3.24 (Low, 3.9-5.00 Norm), HGB 9.5 (Low, 11.5-13 Norm), Platelets 76 (Low, Norm 150-450), LDH (cancer destruction/cell destruction) 35,968 (High which is good, norm 500-920).

Sydney has had an ok day... She has rested comfortably on Fentanyl, however, for some reason yet determined, she has started vomiting and has had diarrhea throughout the day. Is it the Fentanyl, the Potassium Chloride for her upcoming test, delayed reaction to chemo, the chlorixidine for mouth care?

Dr. Eames was in today and has said that we will have to stay another week, not because Sydney is doing worse than expected, but because she's not doing better than expected. She has shown no interest in eating, and she is on IV antibiotics and IV nutrition, and until those things change, we will be here. They also expected her to bottom out tomorrow on her labs (especially white blood cell counts).

Tomorrow is another day:-)

June 29, 2003 (Sunday)

We have been here a full week today. It seems surreal. Sydney is still very uncomfortable. We have completed what I call her morning torture, CVC (central line) clean up and re-bandaging, sponge bath, bed change, mouth care etc... The doctor has been in to look at the 2 raw spots on her chest next to her CVC, and thought they looked fine although they have started to bleed now. She (Dr. Wilkinson) will be back in in a while to help us try to figure out why Sydney can't seem to get comfortable or get any sleep, and to determine whether or not Sydney is going to have to have another transfusion.

The day was horrible. Sydney was so painful, and did not sleep. We ended up throwing a lot of drugs at her, trying to get her comfortable enough to sleep. None of them worked until around 7:00pm. She cried all day, suffered all day. At one point, I believe we had her feeling better pain wise, but she was so very tired she would not sleep. I (Lynley) know there are many long days to come, but Sunday was definitely the longest day of my life so far.

For the doctors etc.. out there reading this, you might be interested to know the laundry list of drugs we gave Sydney, none of which helped. Morphine (Saturday night/Sunday am, via a push, then by pump), Vistaril, Toradol, Ativan, Benadryl, Tylenol, and finally Fentanyl which is holding off the pain so far...She truly looked like someone who had been out on the streets a couple of weeks, and was totally wrung out....

June 28, 2003 (Saturday)

This morning Sydney has seemed very uncomfortable. They gave her some Morphine to help, but the pump messed up, and it was a good 30 minutes before the nurse could get to it. When she took her bp, it was 180/90 which was very very scary. She fixed her Morphine, and took her bp about 15 minutes later, and it was down to 141/60 which is still high, but much better. It must have been pain related. Sydney felt better, and actually talked more than she has in days before falling asleep and sleeping comfortably.

It was a long night, Sydney talked a lot, about what, we're not sure. It seemed as soon as we got her comfortable with Morphine, her fever would spike, and as soon as we got the fever under control, the Morphine would wear off. They have put her on a Morphine pump now, but she isn't sleeping well, so we need to figure out what is going on there.

Her labs today...

WBC 2.8 (very low), RBC 2.81 (low), HGB 7.8 (low), Platelets 122 (low), LDH (cancer indicator) 41,346 (very, very high, normal is 500-920)

June 27, 2003 (Friday)

So far, Sydney seems uncomfortable, even with morphine. Her labs have dropped, and they tell us that she will need a blood transfusion. Other than that, so far it's a "normal" day in the hospital. Our dear friend Monty will be attending the first day of the National Neuroblastoma Conference in Chicago, and we anxiously await news from that end.

Sydney received her first transfusion starting at about 1:00 this afternoon, and finished up around 3 hours later. Afterwards, she seemed more energized, and her color certainly returned. However, about an hour or so after, she started acting like she hurt again, so we dished up another dose of Morphine, and she slept all afternoon. After she woke up, we went for a short wagon ride, but you could tell she really didn’t feel well. She wanted to go “home” to bed.

We decided to not give her Morphine after she woke up from her nap, but decided to try Vistaril (sp?) that as they say, they pass out like water on this floor. Unfortunately, this didn’t seem to help, and we had to give her more Morphine to get her comfortable. About an hour later, around 7:30, she spiked a high fever (103) and looked more sick than we have ever seen her in her 2 years. The nurses called the doctor and he (Dr. Eames (she) is off ‘til Monday) decided to do Tylenol and take cultures to see if we have a bacterial infection going on, or if it is just her low blood counts.

In the meantime, I (Lynley) gave her one of her nightly oral meds. She took it well, as she usually does, but as soon as she got it down, she started to make gagging noises, and then threw it back up. This is a child who literally has never thrown up in her life. We got that all cleaned up, and in the process of changing her clothes, I noticed that she had a sore developing under her bandage that covers her central line. Our wonderful nurse Anabelle came in, took the blood for her cultures, and then changed her dressing. We found another infection spot under the bandage, so we ended up just wrapping Syd’s CVC only in gauze for the night, instead of attaching any adhesives.

It’s about 11:00 pm now, and because she kept the Tylenol down, her temp is now 99.5, and she is once again sleeping peacefully. We desperately hope tomorrow is a better day, we have every belief it will be.

June 26, 2003 (Thursday)

And kept sleeping….She has not had a great day, but it hasn’t been a bad day. Dr. Eames upped her morphine dose a bit, and she seems to rest comfortably at times. She shows no interest in eating or drinking, and most the time does not want to be touched, even by Mommy and Daddy. We have been told “go away”, “go there”, and “no mommy, daddy” throughout the day. Her blood pressure has actually improved a great deal, and is now 115/70.

Around 7:00 tonight we actually coaxed her into a wagon to go for a ride, and to have dinner with us in the family room (now called the Dungan’s Office by the staff:). She still wouldn’t eat, but had a couple of sips of juice. Back in our room, she tosses and turns until we kick everyone out and put on her favorite sleepy music. Fifteen minutes later (with the help of sleepy drugs too), she’s out, hopefully for a good nights rest.

It's now 1:15 am and neither Mark nor I can sleep because we messed up the website. Sydney is dreaming, really strange dreams. They just came in to finish off one of her 3 chemo drugs... Oh for sleep...

June 25, 2003 (Wednesday)

A slow morning and afternoon. Sydney got to make sand art in a large syringe, and it now hangs proudly from her IV pole. She points it out to everyone who walks in the room. A Mr. Jim Newton came to sing to all the kids at 1:00. Sydney was enthralled. They passed out little eggs with bb’s in them so that they could shake them to the music. What a wonderful place we are in.

The plan had been to start chemo early in the afternoon, but Sydney was still sleeping, and sleeping well, so the chemo actually began at 6:00 pm. She is getting 3 chemo drugs simultaneously, one for 6 hours tonight, and 6 hours the next night, and the other 2 for 72 hours straight. Besides the fact that we now have to glove up to change her diaper, and the fact that we are giving poison to our daughter to save her life, it all seems incredibly simple, and Sydney does not show any affects. In fact, at this point, you can’t tell the difference between these drugs and IV saline.

During the night Sydney’s blood pressure rose as high as 159/85. It scared us, but the nurses understood our fear and paged Dr. Eames. She said to wait and see, and sure enough by later in the night her blood pressure had dropped back to high, but now normal, levels. Sydney slept well through the night….

June 24, 2003 (Tuesday)

A day of more tests, and long talks with Dr. Eames… Sydney started the morning out early in preparation for her hearing tests at 9:00. These are done because chemo can cause hearing loss, and they want a baseline before chemo begins tomorrow. She is slightly sedated for this process because she has to stay still. It turns out that our audiologist is a friend and neighbor of our close friends, Chance and Kory, and we find that is very comforting to have a familiar face at the helm. Immediately following the hearing test, Sydney is taken to have her second CT Scan, this one to go back and look at her upper abdomen, chest and neck. It turns out that they do not do her head because other tests and the history of neuroblastoma suggest that her brain will be unaffected.

We return to the room so that Sydney can sleep off her sedation, and we all relax a bit. Dr. Eames has scheduled a big meeting this afternoon to discuss all of the results, and to decide upon a treatment plan.

We start our meeting with Dr. Eames around 2:00. All of the Grandparents were there, as well as our friends Jenny, Bob, Monty and Ashley. We spent approximately 2 hours meeting. We wrapped up when the technicians arrived to do Sydney’s sonogram of her heart (another baseline), and decided to mull over things overnight and meet with Dr. Eames again in the morning. Sydney’s sonogram went well, and we did research and spent the night enjoying Sydney, knowing that the next day would bring the first dose of chemo.

June 23, 2003 (Monday)

Still in shock… An entire day of tests. I’m writing this 3 days later, and I’m already having trouble remembering it all. The day began with a grueling set of tests including 30 minutes of full body x-rays (which Sydney really, really truly hates), full body bone scan, blood work, and preparation for surgery.

Her surgery was moved to later in the day, and actually started at about 3:30 in the afternoon under general anesthesia. They placed a central line for her upcoming chemo, took a biopsy of her tumor to send to the lab for confirmation of neuroblastoma, and took bone marrow aspirates (for information to be used later, and to test to see if the cancer was also in her bone marrow).

Sydney was out of surgery around 5:15pm, and had recovered enough to be moved back to her room by 6:00pm. Everything went fine.

Sydney rested for the rest of the evening. She slept ok through the night, but woke up every three hours as the morphine wore off.