Very rarely do I come out with a post when I know so very little on the subject but, frankly, I am just too darn excited for Sydney. So, don't take this as the final word. Don't take this as law. Take with a grain of salt and for those of you facing this issue take it as a sign of hope.
So here goes.
I have never forgotten how lucky we are to have made it this far with Sydney's neuroblastoma diagnosis. I know how blessed we are. However, with that gift has also come some challenges. Her treatment success has come with some side effects and, although I would gladly accept them for the gift of life that we have been given, it pains me for her to face these challenges.
Like with treatment, this is a road that she has to travel. I can not do it for her. (Although, I sure wish I could.)
Sydney has faced two side effects which are fairly noticeable to others. They are physical signs of her struggles. The first is her hearing loss which thankfully, up to today, has not been too profound. While she should be wearing her hearing aids on a daily basis she routinely finds reasons to not wear them and thankfully she can make it through life pretty well without them. Hearing aids would be less noticeable if she had long hair to cover her ears and this leads into the second side effect which gives a growing beautiful little girl mountains of distress. Sydney has extremely fine and thin hair. However, it goes beyond just that. Her hair just never came back completely. Her scalp is visible through her strands of hair.
For a young girl this is a huge hurdle and one that effects her perception of herself. It effects her confidence and how she believes she is viewed by others. While we feel that we have done a tremendous job as parents in teaching her to recognize her self worth, we also realize that this is a big hurdle for her to climb. We understand that it is a big deal to her.
Over the years we have tried shampoos and medications but none was the magical elixir. While some of the best (and most expensive) treatments gave her more body they often had the effect of raising and separating the strands of hair, making the issue even more noticeable. Furthermore, there were only a handful of children that we knew that had this same issue and none were having more luck than our family.
Until 2 days ago...
While discussing some testing of Sydney's thyroid with Drs. Eames and Granger, they mentioned some success that another child with ALL was having. Apparently the little girl had very similar symptoms to Sydney but was experiencing success.
Her hair was growing back.
Apparently this little girl had found a physician in North Texas that was having success with Rogaine and cold therapy - lots of success. Within months there was a dramatic difference. We asked them if they could put us in contact. It turns out that the dermatologist is the partner of the physician that removed Lynley's skin cancer. It turns out he was right under our noses.
Now, I don't know the specifics. In fact, I don't even know that it is Rogaine and cold therapy that was the secret. What I have heard has been 3rd or 4th hand and while I do not doubt the success they have seen I certainly don't have enough confidence to tell anyone what the specific treatment plan is.
What I am excited about is the hope. This is one thing that I have always wanted for Sydney. While I would love her no matter ,I want her to be happy and confident and this could be a huge step for her. Over the coming weeks I will detail our plan and progress and, if it turns out to be as successful as it appears to be, you can bet that I will be sharing the details.
In the meantime, my purpose feels rejuvenated.