|Our Beautiful Christmas Baby Girl|
Right before the 3rd round of Antibodies, we learned that Doug's best friend was diagnosed with lung cancer. The day before Emily went inpatient, we made Thanksgiving Dinner and I made an extra meal for Doug's best friend and wife whom had already been in the hospital for a week for Doug to take over. Doug has been visiting with him and checking in on him and helping him with questions. Tom is an amazing man, a father, an amazing husband and doesn't deserve this, he takes great care of hisself and always works out and eats well, so please send some love for him. We are walking the journey with him and his wife as well. (This was random but I was thinking about him and really wanted to share)
So today...today...today was a long day, longer than what we expected it to be. Counts were checked this morning and Emily's platelets dropped again, this time to 19. So, they dropped from 29 to 19 in two days. Certainly not what we wanted to hear and we were asking nurse Julie why she thought they were dropping. We really don't have an answer, but she had to get a transfusion. Once the platelets were just about done Dr Sholler and the Nurse Practioner Shannon came in.
I can't remember what we were saying but I think it had something to do with the platelets and Dr. Sholler was standing there, and said "Well there is progression." WHAT? WTF you have to be kidding me? Im sorry you said what? She indicated she has some more spots in her spine and some on her head. Im sorry I can't be technical here and tell you were because this honestly wasn't the news we were expecting to hear. We didn't want to look at the scans, and didn't even look at the report, because once again like 2 years ago everything seemed blurry again. Tears began to flow and everything around us just seemed to stop.
Emily has true progression these are spots that she has never had before. I know that Dr. Sholler said they are only in the bone, so no soft tissue just cortical bone. She has been taken off the CH14.18 trial so no more inpatient at this time and all medicines such as GM-CSF and accutane have been stopped. Its not working because the disease is spreading. IT'S NOT WORKING DAMN IT. We really thought the damn antibodies would clear us, what happened. How? Why?
Because of the concern of the platelets dropping, they are worried about her bone marrow, so tomorrow at 8AM we we will meet with the nurse to have another CBC done and then have a bone marrow biopsy done. The biopsy was not planned, so this had to be placed in last minute. We should have a preliminary by end of the day of the results on her bone marrow. We will talk with Dr. Sholler about DFMO, she thinks we should put her on this and let Emily's enjoy the holidays and we can discuss from there what our next steps will be. We think this is a good idea, Emily deserves to be home for the holidays with her sisters and have a wonderful day. We do already have Dr. Gowda searching for what other trials may be available to us and Dr. Sholler is looking and we as well will be looking. The Bone Marrow results will give us more of an idea of the way we need to go as well. If we have bone marrow disease,we are playing with something more messy.. But we are both are even more scared because Emily has not had any bone marrow disease since she was diagnosed 2 years ago.
2 years to the damn day Emily had scans and there is growth. What the hell? We are both at a lost here, both feeling sort of not together, just not understanding how this happened. Doug and I both went in seriously believing some of the spots had gone away and that we were well on our well of acheiving that clear that we have been wanting. Emily deserves to be clear, she really does. Emily DESERVES THIS. Our Christmas wish didn't come true and our hearts are broken and we are both scared. Emily is not in any pain right now, nor has she complained of any at this time and we hope it continues to stay that way and that this disease will go away.
Im sorry I write this, but I am. Randomly today tears have fallen for both Doug and I. Neither of us can fathom the thoughts that something ever happen to Emily and have our 3 girls, 3 girls together. We can't fathom the thought of Emily not being here to celebrate her birthdays and Christmas and Holidays. We can't fathom the thought of being in our vehicles and looking in our rear view mirror and she not be there, so we continue to fight.And we honestly don't how we could handle it... Seriously this disease is a monster, a monster that invades our children and there is no understanding it.
We haven't yet explained this to Emily, we really have to find the right way to explain it. Emily is so ready to be done with treatment, so we really need to find the words to talk to her and really have her understand. I know that many of you have been waiting for an update, but we really are still trying to swallow all of this. If we don't respond to text messages, emails or phone calls, please know right now we are still learning to deal with this in our way. We are still trying to figure out everything and moving forward.
Today we went and picked up purple and yellow chalk for Teddy's mom, for Teddy, for Emily and all the other children fighting neuroblastoma. If the roads are not wet and covered with snow, we will be stopping every so often to write on the road.. We will draw a big yellow ribbon for pediatric cancer and in purple we will write cancer kills children too.
|2 beautiful girls fight Neuroblastoma and they are both amazing.|