Andrew (DOB 10-19-00) was diagnosed with ALL (acute lymphoblastic leukemia) on August 6, 2003. His leukemia is considered high risk (t-cell with a high wbc) and he was put on a rigourous treatment plan (ccg 1961 ser) which will last 3.5 years and consists of 13 different chemos and cranial radiation. Andrew's battle had it's ups and downs. He spent 15 months on intensive chemo, including radiation, and another 2 years of daily chemo for maintenance.
We are thankful to proclaim that God has done a mighty work in Andrew, and he is now in remission, living life as a "Survivor".
Please keep him in your prayers as he will be closely monitored to help minimize side effects and ensure that the cancer remains in remission.
We thank you for your prayers, for healing and protection.
We went to visit the urologist today, and it took me back to a conference we had when Andrew was diagnosed.
On our 2nd day in the hospital, our team of oncologists sat us down, and gave us the official diagnosis....Acute Lymphoblastic Leukemia. I remember Doug asking, "B cell or T cell?"...the doctors seemed surprised he knew to make a distinction, and I didnt even know what he was talking about. They said stoicly, "t cell", and Doug's head dropped. I become anxious, "what does that mean? what does t cell mean?" Doug looked at me, "It's more aggressive"...and the doctors nodded, and I cried.
I think I cried for 2 hours straight, which is how long the conference went on...before I walked out. The doctors werent done talking, but I was definitely done listening.
There isnt much that will overwhelm me. But after giving us the diagnosis, the doctors had to get our consent to treat Andrew...and that meant spending two hours going over every chemo, and all of it's potential side effects. After 2 hours, I couldnt take one more word of it. It was torture having to hear about all the long term side effects....heart failure, renal failure, etc. etc......I finally thought, "If we are lucky enough to beat the cancer, it sounds like this treatment will kill him, and since there isnt any option to our game plan, our only choice is to pump him full of chemo, so why do I have to sit and listen to all the potential side effects?" ..and that is when I left. I left the room, and with a nurse pulling at my shirt, I pulled away and stepped into the elevator....and left the hospital. I vaguely remember wanding aimlessly on La Veta, sobbing, feeling as if there was no hope for Andrew.
To have Andrew with us today, is of course a huge miracle, a blessing for which I am DAILY grateful. I am reminded of all that God has done for him, to heal and protect him, every single day. But it doesnt make these side effects sting any less.
At that conference, I never imagined we would have the opportunity to have Andrew with us, 10 years old and thriving...but here we are, and now we are dealing with those late effects they warned us about.
The urologist said that Andrew most likely does not have kidney stones. The blood in his urine and the pain he experiences is hemorrhagic cystitis....which means the chemo has irritated the lining of the bladder to the point of making it bleed. The only thing they can do, is try to dilute the urine so that it is less irritating.
I realize this is minor in light of what could have been, but for goodness sake, he is only 10. I hate that he had to be pumped full of so much chemo that so many parts of his body are damaged. I hate that this type of damage continues to occur over time, and that he will have to deal with all kinds of painful issues for the rest of his life.
What I really hate, is cancer...and the fact that there is very little being put into research for kids. I hate that kids get longer, harsher treatment than adults, simply because nobody wants to invest in finding a cure for them. I hate that the American Cancer Society has that darned "happy birthday" commercial....because it's a great commercial, but since the ACS doesnt invest in research for kids, I guess they really dont care if kids suffer or get more birthdays. I hate that so many of our friends dont even get any more birthdays, because the chemo was so harsh it killed them.
I guess this is just one more reason to keep climbing onto my soap box, keep spreading awareness, raising funds, and working towards a cure.
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