My sense of smell has always been a very powerful thing. Many memories and emotions can be conjured via a scent. The scents that I have to smell now have absolutely no redeeming qualities. Ever since Gregory’s first admit in February, my nose has been filled with the smells of bleach, sterile environments. Adhesive tape, fresh plastic. Bandages. BLEACH. Such a lack of scents, really. During the last few weeks, the Ronald McDonald house had a couple of floral arrangements at the counter in the main lobby. Simply walking through the lobby, the scent of Lilly’s or Carnations was so overpowering as to be nauseating.
The most difficult scent, though, is the scent of Hospital Gregory. I can’t even really explain it. I don’t know what those IV fluids do to him, but it’s almost a sweet-sulfur-chemical smell. It seems to be stronger this time around, too. I’m not sure if it has to do with his extra meds and the Chemo, but he does not smell like Gregory. Even bathing in his regular stuff and washing his clothes in familiar detergent does nothing to cover it up.
All in all, it was another good day. Counts: HCT ~ 24, White ~ 18, Platelets ~ 18. Since his HCT fell below 25, he did get Red Cells today. Which was an interesting dance, in and of itself. He had his 8:00 Busulfan dose, two hour infusion, labs every 15 for the first hour, then hourly labs. When they typed and crossed him for his red cells, there was something funky with his blood. They ran a type and cross at SCCA, when we first got here and I knew that somehow, Gregory had some O blood along with his B Positive. Strange. So the blood people had to call INBC back home and get some questions answered. The red cells showed up around 1:30 but the docs wanted us to wait until his 2:00 infusion was finished. Which meant that the red cells did not get hung until 4:30. It’s a four hour infusion. Which meant it ran into his 8:00pm infusion. Thankfully they were Ok with a thirty minute over lap. Gregory was absolutely beat, today. When I bathed him last night, I noticed that there was an awful lot of blood around his Central Line Dressing. We let it ride until today. There was further seepage and the dressing needed to be changed. That was NOT fun. It took two of us to negotiate him through it. I want to say that it was also about a 30 minute job. He fell asleep about 2:00 and slept for five hours!! Which meant he slept through a goood portion of his Red Cell transfusion, too. When he did wake up, the first thing he noticed was his blood. When the line is bright red, you kinda notice it. He was still groggy, picked up his line and exlaimed, “I’m getting Blood?!?!” I’m looking forward to seeing his behavior, tomorrow. Last time it improved dramatically, yet he wasn’t going through high dose Chemo. We will see. I guess kids get super tired through this. So his sleeping alot is not unexpected. It’s kinda nice, ’cause it allows me to nap, too. I slept with him for about two hours today.
It amazes me how much they can hang at once. Medication wise. If anything, this experience is making me reconsider my take on major medical intervention and research. If the research had not already been done, if a proven protocol had not been established, if folks who suffered side effects had not come before us, our Odyssey would look so completely different. Which is another reason why I am choosing to live this so publicly. Leukemia and Bone Marrow Transplants are so abstract to the public at large. Do I dare mention that Gregory will be getting Hemataopoietic Stem Cells, not whole bone marrow? The stem cells are found in the bone marrow. Amazing science. Yet if we had not had this experience, I would have lived the rest of my life completely ignorant to Leukemia, Childhood Cancer, Bone Marrow Transplants, Chemo and stem cells. Also the great need for support of the Ronald McDonald House. While research for cures is crucial, I would be more interested in finding out what is causing the cancers and then avoiding the cause. Huge bill to fill, I know. A girl can dream, can’t she?
Curtis had an awesome experience, today! He and his class had the opportunity to disect cow’s eyes. He was pretty jacked for this and AMALIE!!!! thank you for snapping some pix and sending them to me!! They are already posted to my flickr. You can live vicariously through me and vice a versa!
Another challenge that we faced today: Gregory hardly ate anything, today. Nor did he drink much. I know that TPN is in store, I just don’t know how soon. He rallied a tiny bit this evening and ate a dinner roll with butter! Woo hoo. It has nothing to do with what’s on the menu. He just did not have an apetite, today.
Not much else to get down, for today. I did find out that Gregory’s numbers will not begin to crash until a few days post transplant. I guess it takes that long for the Chemo to get to work. I’m not sure of how all this science works, I’m just grateful that it does.
Oh yeah. I almost forgot. In order to bathe Gregory he must be unhooked from his lines. Tonight, after Andrea (tonight’s nurse) unhooked him, he raised both fists in the air (picture Rocky) and exclaimed, “I’m FREE!” Little turkey CRACKS me up. Also, while sitting on the potty he says to me (as he’s looking at the trash thingy) “P-U-S-H. Push. Mommy, that spells PUSH.” I feel like we are putting the cart before the horse, Gregory is doing an awful lot of word memorization. While word memorization is important (AKA sight reading) I need to beef up our efforts for learning his sounds. Yikes!! I wasn’t expecting to need to do it so soon! Yay?
My thank you for today is dedicated to everyone past and present who has worked tirelessly to refine the Bone Marrow Transplant process. Including all of you that came before us. Specifically to Edward Donnall Thomas for pioneering transplantation and his work with the Fred Hutchinson Cancer Research Center.