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10/27/05 13:47:22 - Segs and Bands, Platelets and Beads

One of the programs in place to help kids deal with the BMT process is called “Beads of Courage”. Each child gets a bead for every time they have a different thing happen to them. Clear beads with silver sparkles represent clinic visits, while white represent individual courses of chemotherapy. Aren has several beads that represent “pokes” – for IVs or blood tests, one for his central line being implanted, and an elephant, which represents his transplant. He is also pretty excited because in the past week or so, he has been able to get a two or three red ones, which represent blood transfusions.
But the last few days, he’s been doing quite a bit better. His white cell counts are actually increasing, though still quite slowly, and he actually has “segs” and “bands”, which are indicators that his bone marrow is starting to produce new cells. His red cell and platelet counts are still falling, but much more slowly than they have been. We’re hoping that soon he’ll actually turn that corner. He’s had a low grade fever today, but the doctors told us that if he keeps making this kind of progress and if we can get him completely off of intravenous nutrition, he might be able to come home late next week.

This has obviously given us great incentive to try to cram more food into Aren’s pie-hole. He still isn’t very excited about eating stale-tasting French fries and squeaky chicken, so we’ve started to get more creative. In order to boost Aren’s calorie intake, MaryBeth brought Aren some “real” food – Go-Gurt and Spaghetti-O’s. Shortly after breakfast, Aren asked for some Go-Gurt. “Sure,” MaryBeth answered. “What kind do you want?”

“Hmmm.” Aren deliberated for a few seconds, tapping his chin with his index finger. “Why don’t you get me something you wouldn’t like.”

A couple of hours after returning with Aren’s yogurt (which didn’t appeal much to MaryBeth anyway, since she’s not really into foods that are squeezed out of a tube), Aren decided that he wanted Spaghetti-O’s. MaryBeth went outside to get them and warm them up, but by the time Aren came back, he had decided that he was too sick.

His “bad day” actually started last night, when he started to get his fever. Then he got another nosebleed. For some reason – maybe because he hates being messy, or maybe it’s just because it’s his own blood – nosebleeds really freak him out. He called Miss Lori, his nurse.

“Miss Lori, I have a bloody nose! I need some platelets!”

This morning when Dr. Loeschelt and Dr. Yrom were looking at him, he didn’t want to sit up for fear of getting another nosebleed. They finally convinced him to sit up so they could examine him. “Aren, your nose isn’t bleeding right now, right? It’ll just be a minute.” While one of them checked him out, the other explained to MaryBeth that they probably wouldn’t give him more platelets yet, since he had only had one nosebleed, and his platelet count was still above what they usually use to indicate transfusions. Right on cue, Aren’s nose began to bleed.

“Now can I get some platelets?”

The doctors somehow avoided rolling their eyes (they both have very good bedside manners), but since this was his second nosebleed in less than a day, they decided Aren was right. “Yes, Aren, we’ll get you some.” The doctors then turned to MaryBeth and began discussing some of the other details surrounding his treatment.

Sixty seconds later, still holding about five Kleenex to his nose, Aren finally blew a gasket. “GO GET MY PLATELETS!!!”

“Okay, okay! We’ll go get them, Aren,” responded the doctors as they quickly exited the room. What else could they do? It turned out that there were no platelets to be had in the hospital, so they would have to wait for some to come in from Georgetown University. Since his red count was borderline low enough for a transfusion even before his long nosebleeds, they decided to give him a whole blood transfusion, as well. Unfortunately, they had a tough time typing and matching whole blood for him, so they had to wait for his blood to arrive all the way from Baltimore. Aren, by this point was pretty fed up with everything. Between the blood problems, his lack of Spaghetti-O’s and his fever, he had definitely decided that he was ready for a “bad-day” bead.

For more information on the Beads of Courage program, click here

A list of the bead colors (as used at University Medical Center in Tucson, AZ – it might be slightly different for Aren) is here

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Velda wrote:
I checked out the PDF - totally cute! If you guys ever need help uploading pictures of stuff like this (his necklace, etc) just send em my way or I'll show you how.
01/11 09:58:47

Derick Jones wrote:
Beads of Courage program seems like a very nice program. I should let our doctor know about this too. May be they can learn more and make some changes in the system.
01/06 11:58:34

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