Reality Check

 

So we were flying high with our wonderful results that Jillian got from her tests and best of all she was responding well to her chemo. Her counts were still low which meant we couldn’t leave the hospital yet. If she wants to leave the room she has to wear a mask because her immune system is so low. She is susceptible to so many more illness. So in the future if we seem a little over bearing about visitors or hand washing please know this is why. Going back to her counts (and please if I get any of this technical information wrong I am sorry, I am learning as I go and trying to absorb everything) her counts have been on the low side, in order for us to be consider to go home Jillian ANC (a combination of many blood counts) needs to be over 500. Right now I believe she is at 100. So we have a little way to go. She received a few blood transfusions in the beginning when we arrived here. You could see her color coming back to her face, she didn’t look as pale anymore and her mood was getting better. She was started on numerous medicines and her chemo treatment. If you are not familiar with cancer, like we weren’t, you imagine chemotherapy as being this medicine that is admintered in a scary closed off room that consisted of crazy forms of injections and just horribleness. Well this isn’t the case. Her chemo is either administered in her PICC line or orally. When we get back home I will be the one giving her her chemo.  I was shocked it was this simple. Other than chemo she is also given a steroid. Steroids can change her behaviors in many ways. For one she eats so much now! The negative effect of the steroids is that her mood can change. We are lucky to not be seeing any major changes but I’m sure that will come. One of the things that is most depressing for myself and for Jillian is the fact that her hair will fall out. I have been trying to explain to her that this is a possibility and that there are so many hats and scarves that we can play around with but still it’s a bit depressing. If you know any cool hats or scarves please let us know where you find them at!

 

 

 

To continue with the more medical side of what we have experienced these last few days. Like I stated we were so happy to hear that Jillian had a very common form of ALL and that her prognosis was very high. We had a treatment plan and we had goals to accomplish. Little did we know that we forgot about the genetic testing that was done which we hadn’t gotten results back from yet. Yesterday was a day that rocked our world and turned all our happy thoughts upside down. During rounds our group of doctors came in and informed us that Jillian had tested positive for a genetic order called Philadelphia Chromosome. Her full diagnosis is PH+ ALL. The odds of a child her age, or children in general, having Leukemia with PH+ were 3%-5%. We sat there a bit shocked because just a few minutes before that we were so confident in her prognosis. So what was the new survival rate then? The doctors told us if we continued on the treatment plan we were on that Jilly would go into remission (be cured of her cancer) but her chances of relapsing was severely high. And if relapse happened because of her new diagnosis that her survival rate was 10%-20%. Once again, shocked. They continued to tell us because we were at Stanford that there was a research study that we could be involved in that had an experimental drug that could up her survival rate to 70%. It’s a drug that has not been studied as thorough as another drug we can go with whose stats are 50/50. After sitting down with the doctors and Daniel and I discussing it thoroughly we have decided to take the shot and go with the experimental drug. We want that extra 20%. So on day 15 of her treatment she will be introduced to her new drug that will give her a better survival rate. It’s not the end for us; it’s just a harder challenge. This is where we are today, her counts still look good and are rising but we have a little more to deal with than we thought. All of this is still surreal to us and I am finding that putting Jillian’s story down on paper is very therapeutic for myself. We are very confident she will lead a long long life and continue to make us smile every day. I will continue to keep everyone updated day by day on her status. As of right now we have a plan and intend on making that plan work for her.