Some Roller Coasters Aren't Fun

After a slight rebound three weeks ago, Sam's WBC and platelets dropped again the week before last. These "up and down" weeks create a "love-hate" relationship with Mondays (our clinic days.) If the numbers are good, we feel a sense of relief for a week. If they aren't great, we worry endlessly until the next week, or the week after that, or the one after that for more promising news. This past Monday, was a "good one" in a sense that her platelets had doubled and her WBC were up slightly. Her "white count" is still lower than it was before starting the steroid taper and this could as usual be a "variety of things." We have successfully slightly raised her cyclosporine level after experimenting with a  "new" method of administering this medication through her g-tube. We worked for hours with her transplant doc last week at different options and are now cutting a PICC line tube at one end and using specific syringes directly into her g- tube "button" without using the extension tubing. I then attach the extension tubing and administer the rest of the meds after this one. So far we have had promising results with this "workaround" and I'm very thankful for the doctor taking the time with us in experimenting with several different non-conventional ways to try to make this work for Sam. She had developed a slight rash around her neck and upper back similar to what she had a Day + 30 and it seemed no coincidence this was happening right after her anti-GVHD drug was dropping to a non-therapeutic level.

On a different note and away from the medical side for a change, this is Childhood Cancer Awareness month and I have come across so many great articles, posts, and first-hand accounts written by parents, doctors, and siblings on the subject. Below is a link to one of them that particularly hits close to home, While technically a different diagnosis, the rippling effect throughout the family felt before, during, and after treatment rings so true. Here is what she shares...

http://communified.org.au/the-emotional-costs-of-childhood-cancer/



We personally didn't blog about our time of diagnosis or the heart wrenching 3 1/2 months leading up to transplant for a variety of reasons. This was a time of crisis and fear and there were truly no words to share. For a long time I didn't even speak to my closest friends because I felt like if I started talking about it out loud, the fear and sadness would overwhelm me to a point where I would not be able to "come back" and pull it together enough to put one foot in front of the other and get done what had to get done. But, this brave woman above eloquently touches upon the emotional toll that is truly devastating.


 While I feel most days we manage our "new normal" fairly well, there are days when the trauma of it all is more evident than others. You can't erase the vivid memories in your mind: The numerous Sunday trips speeding to the ER to get your toddler a platelet transfusion as she bleeds from her ears, nose, and mouth because she can't make it a weekend without. The feeling of powerlessness as you sign documents agreeing to "poison" your child in a way that will bring them tremendous pain and suffering, but the alternative is even worse. The days that turn to weeks and then months as you watch your once chubby and vivacious toddler stop eating, drinking, walking, and talking until they are laying lifeless and pale in a bed hooked up to perpetually beeping machines which you have grown to love because it means she's alive. The countless times you hold her down screaming while trying to convince her you REALLY are trying to help. The gut wrenching conversations with your "well child" as he asks you "when you are coming home?" and if his sister "is going to die?" and you can't truthfully answer "no." The resentment you see in him when he visits for 5 mins. in the hallway as you tell him that he is "just as important" but your actions can't help but somehow tell a different story.  It's not an easy road. I could have never imagined what it would be like and don't expect anyone else to. It DOES change you in a way that any truly traumatic life event does, but we're learning it doesn't have to define you. The "regular" conversations with other people become easier. You start to feel less like you are walking in a constantly dazed state in an alternate universe that no one understands. You start to laugh more, smile more, and live more. There is something uniquely heartbreaking about childhood illness, but something equally amazing about how a child's will to live is so strong. I know as a family we will always have "scars" that run deep from this experience, but we also have two INCREDIBLE daily reminders of human resilience, compassion, and giving. I hope most days our minds are able to focus on this and are clouded less and less with the vivid memories of the past. To all those who continue to follow Sam's story... Thank you... It's a marathon, not a sprint and we feel you cheering her on all the way!