What a week! The mental, emotional and physical roller coaster continues. First things first. Results are in and Gregory’s Bone Marrow Aspirate showed no evidence of disease. Our hospital here, also did a test to detect how much of Gregory’s marrow is donor and how much is his. Spokane’s results showed 100% donor. We received these results last Wednesday, the 20th. The marrow was also sent to Seattle Cancer Care Alliance. They are reporting a different number for donor/Gregory. Seattle is reporting that his marrow is 99% donor and 1% Gregory. Which is good, but I’m not sure what this means for the long run. I haven’t asked, yet. I do know that 99% is good, too, yet I wonder if this means anything in the long haul. Is the new marrow slipping? Will Gregory’s marrow slowly come back? *shrug* Only time will tell. I’d be curious to know what the donor to host ratio is for any of you out there with Bone Marrow Transplant kids. Not that it would be a reflection of Gregory and his disease, I’m simply curious. I must confess that I’m concerned about Gregory’s gene mutation. When we last looked for the gene mutation, Gregory was 100% donor. The gene mutation was not detectable. I’m concerned that with him being part “himself” that the mutation is still present in his own marrow and the disease could rear it’s ugly head. *See what I mean? There never is a moment’s reprieve.*His BMA was last Tuesday and we were discharged on Wednesday. Late afternoon/early evening. We made it to the Water Retreat about 7:00 that night. We had such a pleasant evening. Gregory was in fantastic spirits and we had room on the bed to comfortably snuggle and hang out. After his midnight dose of Tacro, I turned the light out, laid my head on the pillow and was OUT! First time I’ve been able to do that in a long time. I slept solid until 7:00 when the alarm went off and it was time to do it all over again. Mom came out to see Gregory, while I ran a few errands. I took the time to go to Barne’s and Noble’s and Staples and browsed for about 30 minutes in each store. Books, office supplies and yarn. My three favorite stores! At Staples I was finally able to find some of those window crayons, which are basically fat, colored grease pens. When I returned, Gregory was still in a fantastic mood, he got up and drew on the window. All day Thursday was so awesome. He was happy, playful and just plain good. Late Thursday (9:00 PM ) his body decided to spike a fever. 101 degrees. Which meant another admit. We had a blissful 27 hours of freedom. I re-loaded the car and we took off. This admit was the smoothest admit I have ever experienced. Everyone was quick and efficient. On Wednesday his ANC was 3200ish. Late Thursday night it has risenn to 7700ish. He’s been hovering between 2800 & 3200 for the last several weeks. Seeing a big jump like that signaled that his body was trying to fight something. The tough part is that his marrow is not making the white cells needed to fight anything off. They are supressed with his Tacro and Steroids, in order to keep his Graft Vs Host at bay. It’s a double edged sword. The same cells that cause Graft Vs Host also fight bacteria and virus’. Not to mention, his marrow is still not fully mature. Cultures were drawn. His temp at the ER was 99. Gregory’s “normal” temperature is between 96.7 & 97.2. When he pops anything in the 98 – 99’s I know he’s working on something. He also had that glassy eyed, red cheeked “fever” look. He was started on Vanco and Fortaz. (antibiotics) I forgot to mention! Around 6:00 that night, Gregory also started to get a headache. I was able to get some Oxycodone in him and it seemed to get better. By 9:00, though, it was returning. (Remember he had a giant headache the Saturday before.) They administered the Fortaz and started the Vanco, while we were still in the ER. We made it up to the unit around 2:30 and got settled in. When we entered our room, it was set up for us. With the supplies I like to use, where I like to store them. It was both extremely pleasant and kinda creepy. Creepy because we have been here long enough for the staff to know what I like and how I like it. Pleasant because they have paid attention and take care of us. His temperature remained in the 99ish range for a little better than 24 hours. Then Saturday afternoon he had another 99. He’s kinda jumping around a little. His cultures have been negative for any bacteria. The conclusion is that his body obtained something (gut most likely) and is body is trying to defend it. The antibiotics have been discontinued and we will, most likely, hang out until Monday. Provided nothing else transpires, in the mean time. We did get to see another night of fantastic Fireworks. The National Figure Skating Championships are being held here in little old Spokane. The arena is located just outside our window and down the hill. We have had a perfect viewing position. We were inpatient for the fourth of July, these four nights of fireworks have more than compensated for what we didn’t see on The Fourth. While the fourth of July was VERY adventurous, Gregory was so sick, he didn’t really experience it. Daddy has been able to be with us quite a bit, too, over the last several weeks. He spent the night with us on Friday. My dad was here when Larry showed up, so Larry and I ran across the street to grab a brewski. Man, oh, Man. It was around 7:00 in the evening and a Friday night. The bar is small and newish, located in a strip mall type setting. The place was crowded, noisy and humid. Talk about stimulus overload. The last time I’ve been somewhere like that was early last May. While it was nice to get out and have a libation, it was too much and I couldn’t really relax. Next time we will stick to the PI, which is an OLD tavern right across from the hospital. It’s dark and grungy looking. Perfect for quiet escapism. Larry spent the night with us, that night. He slept in the bedside recliner. It’s been quite nice to have him here. Something we weren’t able to have, while in Seattle. I need to get out a few quick thank you’s:
Terri & Gaye~ Thank you so much for the Thomas Hammer coffee cards! So perfect and timely. It’s great to not have to think twice about getting my Joe!
Lori ~ Via & Starbucks Cocoa Powder? Brilliant! Can’t tell you how much I’ve enjoyed them.
~j ~ Lunch from Luna’s. Sweet, spicy, crunchy, smooth, fresh, fragrant, herbal. Perfection.
Little Wishes ~ Thank you for taking such great care of Gregory and the rest of the kids around here. Nettie & crew, you ROCK!
Margie ~ Thank you for the cards and the books for Gregory. I know this isn’t easy and I so appreciate how much you’ve done for us.
My fellow cancer/bmt families ~ Thank you for being you. Grieving, rejoicing, worrying, sending love & light. You surround us and keep us strong.
KR ~ Fresh, home roasted, fresh brewed “good” coffee!!!!! *swoon* It was perfection in a cup. Thank you, my dear. (Man, do I see a theme here, or what?) We still do not know WHY Gregory’s hematocrit took such a dive and he needed a red cell transfusion. Once again it’s been attributed to “……he’s suffering the effects of his treatment.” The last several days I’ve been trying to wrap my head around the fact that we may not have an answer. Up to this point, this has been a series of “cause & effect”. Not this time. For now, I’m wanting no more headaches and his hematocrit to remain stable. (Along with the rest of his health to be good!) Gregory is good, TODAY. This is what we have. It’s enough. ’til later, Gotta jet.