Will this one actually get posted? I can’t tell you how many times I’ve sat down, trying to form the words, trying to post an entry. The words get all jammed up and the only thing that comes out is stillted facts. It feels journalistic and plastic. Trying to fit everything in my head into a decent length is impossible. We are on day 38/45 days spent inpatient. Our fourth admit since December 23rd. We finally “moved in” on Monday, February 1.The decision was made that we would not return to Seattle for cGVHD diagnosis/treatment. While this really is the best decision for us, I admit a small disappointment. I was looking forward to the idea of returning to the SCCA and Seattle Childrens. Only because we were there for five months and developed relationships and attachments to those that cared for us. It also would have been great to see Chuck and Victoria, again. Sunday the 31st was Dr Reynolds’ last day. He stopped by Monday morning, socially. I gave him a huge hug and fell apart as he walked out of the room. Here is a man who spent his life working with the life & death that comes with Childhood Cancer and other Blood Disorders. His wife gave him a mission (should he choose to accept it) for his first day off the job. This man has left his home, stopped at McDonald’s for a coffe & breakfast burrito, then arrived at the hospital to serve our families, every day. I mean every day. Regardless of who was on call, Dr Reynolds saw his patients. During the seven months that we have been seeing him, we only saw one of the other docs once. He was out of town. On the first day of his retirement, his mission was to obtain a bungee cord for the garbage can. He made sure that I had his phone number and assured me that it was OK to call him with status updates. I plan on calling him sometime this week. He was not with us during the actual transplant and immediately following, but he was out diagnosing doctor. He will miss our one year diagnosiversary. He will miss Gregory’s First Re-Birthday. (Transplantiversary) These are huge milestones and he will not be here to honor them with us. He will most certainly receive a phone call, though. Monday brought the beginning of a new chapter. The remaining docs are Dr Judy Felgenhaur and Dr Angela Trobaugh. They will be adding a third doc, when the right one is found. For the time being, the two of them will be caring for everyone. It’s been mentioned that Dr Judy will be our primary and we will see Dr Trobaugh when Dr Judy’s schedule does not permit. For now, they both round together Monday, Tuesday and Friday. Wednesday it is Dr Judy and Thrusday it is Dr Trobaugh. Monday was amazing. Not only were Dr F & Dr T with us, but our two nurse coordinators were with us for that first “new doc” visit. Jennifer and Stacy. Four amazing women, myself and our nurse. The air was electric and had a sense of Warrior Womyn Power. There is a mission and we are up to the task. First thing on the agenda was to get as many drugs to IV as possible and have a GI & Colon scope done. The only meds he is currently taking through his G Tube are Tacrolimus, Penicillin VK, Dapsone and Dr F added live bacterial culture something-or-other. He was scheduled for his scopes on Tuesday, but we were bumped to Tuesday at 7:30am.
At 6:00am Tuesday our nurse had to wake us up to let us know that they would be coming to get us in 15 minutes to go to surgery. Not quite the kind of wake-up call I prefer. We scrambled to get everthing ready, including getting an antibiotic via IV into Gregory. Transport came to take us down to the surgery area and we were off. Gregory is currently receiving an anti-nausea medication three times a day, via IV. They came to get us before he was due for his morning dose at 8:00am. Right before they took him back for his procedure, he heaved. Since vomitting while anesthitized is a very bad thing, he received his Reglan/Benedryl AND Zofran, right before sedation. For his sedation they used regular old gas. (I wish I had the technical name for it, but I don’t.) He came out of sedation groggy and grumpy. He heaved right after, too. With everything that he had in his system, he slept for most of the day Wednesday and through the night. The GI Doc brought me pictures of his gut and colon. *drum roll please* Gregory’s gut looks beautiful. Which is a double edged sword. There was no visible evidence of cGVHD. Biopsies were taken and we should hear back on those, shortly.
Thursday, Gregory was started on his G Tube feeds. I think Dr F wanted to see exactly what he could/couldn’t tolerate. We started Gregory on his formula feeds at the amazing amount of 1ml/hr. Yes, you read that correctly. One millileter an hour. Tiny, tiny, tiny amount. Well……. Six hours after beginning these truly trophic feeds, Gregory heaved up all six millileters. No surprise to me. Later that night he also heaved at 11:00pm. Our nurse happened to be in the room and he looked at her and said, “I really didn’t like that.” Imagine that. Friday Dr F wanted to try Pedialyte instead. Same rate. Well, we got eight hours out of it instead of six, but the result was the same. All eight millileters came rushing out. During Friday rounds, we had a discussion regarding Gregory and his symptoms. Diagnostically we have not found enough evidence of cGVHD to support his symptoms. Which, unfortunately, in the world of cGVHD doesn’t really mean diddly squat. Symptomatically he is presenting with cGVHD. So. We are treating it as cGVHD and if he responds then we have our answer. (See why it’s called Practicing Medicine.) If he responds then we will discuss long-term treatment options. The first step was to up his prednisone dosage. Ugh! He was taking 13mg every other day. He currently weighs 17kg and the guideline is 1mg/kg. Considering that he has steroid weight gain, they are using 15kg as his base weight. Which means 15mg. Gregory is now receiving 15mg twice a day. Essentially we have quadrupled his steroid intake. He seems to be handling it well, but I do work really hard to keep him on an even keel. I also think that benedryl three times a day is helping to counter act the steroids. The steroids seem to be working. He has an appetite and did not heave on Sunday. He is not eating much, which is good. I do not want him to think he can eat and then get sick because he has eaten too much. Sunday it was 1/4 piece of bread with jam, a tiny nibble of saltine cracker, some ice chips and a few sips of Non Fat Lactose Free Milk. It’s a start.I have no idea what our timeline looks like. We are taking this hour by hour and seeing where it goes. I haven’t even asked what our goal is for getting out. That could change, too. I only know that his marrow is responding, too. His hematocrit was hovering at 22 (which is transfusion level for Red Blood Cells) but after starting the higher dose of steroids it jumped to 25 for the last two days. We will see what it does, day by day. His white cells seem to also be calming down. The inflamation that he is experiencing from the cGVHD could have been contributing to the lower red blood cell count, which caused his marrow to work really hard, which caused him to throw wacky white cells, too. Over stressed marrow. Hopefully we are on the right track. During all of this, my beautiful daughter and middle child celebrated another year spent on this great green sphere. AnnMarie turned eight on Friday. After school she came down to the hospital to spend the night with us. Gregory and I had mentioned it a few times earlier in the week and word got around. Childlife had arranged to bring her balloons, Gregory got to pick out a present to wrap and give to her, we had purple and blue streamers and a Happy Birthday sign on the door. Daddy brought down a cake and we had our own goofy, silly celebration. AnnMarie was in seventh heaven. Being the center of attention is her gig. (Wonder where she got THAT from?) The night nurses fawned all over her and sang her a late night birthday song. When asked what she wished for as a birthday wish, she replied “For Gregory to be all better.” She loved hanging out and simply experiencing this thing we call Home Away From Home Away From HomeHome. She gleefully scooted down the hall in her stocking’d feet to the Ronald McDonald room to refill our ice water “bucket”. When she was sleepy, she curled up on the sleeping bench and sacked out. This child of ours always has a smile on her face and in her heart. She loves deeply and enjoys what’s before her. I miss her desperately. Happy Birthday, darling. What can I say, now, to wrap this up with a pretty little bow? Our days are, actually, quite busy. Lots of short little activities. Vitals every four hours, meds for a large portion of the day, plenty of diaper changes. Legos to build. Cards to make. Books to read. Snacks to be decided upon. Heaving. Nerf guns to shoot. Blocks to build with. Wii, Leapster, DS & Didj. Movies, The West Wing, knitting, reading. A beautiful surprise picnic from an equally beautiful and suprising friend. TPN, Lipids, G Tube Feeds. Tricycle rides. 11:00 at night, even. Visits from Nana & Papa. Time with Daddy. Afternoons spent napping, cuddled up together, exchanging Mama and Baby Kitty love. (Meows and Purring included.) Ours days are full and quite exhausting. We do have a corner room and don’t have much traffic. This is a surprising benefit. Gregory and I don’t stay in the hospital. We live in it. Wholeheartedly. What other choice to we have, for now. ’til later, gotta jet.