Tuesday, December 1, 2009 2:19 PM, CST
Sicily and I are back from the clinic. She did not receive a whole transfusion this morning, but did get platelets. Her platelets were at 9...normal range is between 186 - 348. She was scraping the bottom of the barrel. Her hemoglobin is 7.7 with the normal range of 11.5 - 13.5. Her white blood count is .7...should be between 4.6 - 9.6. She will continue to need the GCSF shots to help boost it back up. I will take her back to the clinic on Friday and she may get a transfusion then.
In our minds, Patrick and I had Sicily scheduled to go inpatient for another round of chemo next week sometime. We are now learning that this time around is completely different. We aren't following a piece of paper, often referred to as a road map, that tells us what we will be doing from week to week. We are now focusing on what Sicily's body is telling us is okay to do. She may not be ready for another treatment next week.
Dr. Hum says they like to have a 21 to 28 day window between treatments, but she has gone as long as five weeks in between to let the child's body recover. I long ago quite writing in pen on my calendar and now it's even hard to pencil things in. When I say we live from day to day, we truly try not to look past the next week because we don't know where we will be or what we will be doing. It's not a bad thing. I am a planner by nature so it just takes a little adjusting and getting used to.
It still amazes us how well Sicily is feeling when the numbers on a piece of paper say otherwise. Those numbers don't take into consideration "who" they belong to! ; )
As Sicily sat in a chair in one of the exam rooms receiving her transfusion of platelets, she fell asleep...sitting up, legs pulled up like a frog, head resting on her own shoulder. It must've been the Benadryl and Tylenol cocktail she swallowed before hand. Our nurse, Laura, and I joke about the color of the bag of platelets being pumped into my little girls body. They are a cloudy, yellowish color. I first thought they looked like the fat drippings from a turkey (I must still have Thanksgiving on the mind) and then considered maybe lemonade, but lemonade is still too pretty. We settled on green tea. For those who don't drink green tea...it is not green! ; ) This is how I spend my time on days like today.
I've said it before and I'll say it many times again...going to the pediatric oncology clinic is like visiting family or dear friends. When we go, I can be assured I will have someone to laugh with, someone to chat with, and if needed, someone to cry with, although I feel fortunate I haven't had to do too much of that. These are very special people. Day in and day out they take care of sick children. That has to be one of the hardest jobs in the world, in my book. Yet, I leave there each time feeling good. Even through all the sadness there is laughter and joy. That's how life should be lived beyond the pediatric oncology clinic doors...the outside world should take note.
It's funny when Dr. Hum tells me she needs us back in on Friday, and my thought is, "Great...I get to have conversations with other adults again! Twice in one week!" I have plenty of conversations with Patrick...I'm not trying to discount him. Other stay-at-home mothers understand what I am saying! Now that I am back to hunkering down during the day and not taking Sicily anywhere unnecessarily, that caged in feeling starts to creep up on me. So, the bottom line is, I like our trips to the clinic. It has to be done so I might as well enjoy it, or better yet, love it as just another part of our lives!
"Dr. Sicily" is in so I better go check if it's time for my shot. She plays doctor more now than ever before. And she's pretty darn good at it! ; )