We are free-er, we are free-er, we are free-er. All my life, I’ve loved being unique. This last year has been just a little too much unique. I’d gladly settle for some average. Boring would be awesomesauce, too. We received our walking papers Monday afternoon. After four wagon loads full of stuff, an arsenal of prescriptions (yet again) and the cutest kid on a tricycle you’ve ever seen, we peddled out to the car and made our way to our Water Retreat. Enroute we met up with Daddy for a laundry/grocery swap. He got the laundry, I got the groceries. There was no school on Monday so Curtis and AnnMarie were with him. Gregory was desperate for them to come out with us. A spontaneous decision was made by Daddy (an incredibly brilliant one, too) that AnnMarie could come out with us and spend the night. She did not have a thing she needed in order to sleep over, but we made it work. At one point it was almost a deal breaker that she did not have her stuffed animal “Sparkle” to sleep with. She was quickly comforted with the thought that Gregory possessed enough stuffed animals to keep her safe and protected all night. Curtis, of course, fell apart since he couldn’t come. I haven’t mentioned this much, but he has been harder and harder for me to have around Gregory. Simply because at the hospital and at the water, he is trapped, he doesn’t have many of his belongings and we have yet to establish any sharing boundaries. As far as Gregory is concerned anything on his turf is his. Rightfully so. Curtis just doesn’t understand this. Curtis gets frustrated, yells, argues. He’s such a big kid now, too. Then Gregory gets upset and stressed out. The emotions won’t be any different when we are HomeHome, but we will have the advantage of everyone having their own turf and belongings. Sounds a little juvenile for an eleven year old? Maybe. This eleven year old? He oozes unique Most of which absolutely tickles me, the rest really stresses us out and creates chaos. Curtis’ greatest benefits are a solid, expected schedule and a REALLY healthy diet. It will certainly be a huge adjustment period when we make it HomeHome.
Oops. Kinda digressed. So, AnnMarie came out with us on Monday and we had a ball. She was a perfect diversion for Gregory, while I unpacked. AnnMarie even voluntarily helped to unload the very full car. The two of them played, laughed and just hung out. It was so nice to hear “normal” chatter in the room and not IV pumps, beeping, various staff, over head “Code Blue. Respiratory. 4S Room 413, Bed 1”. One thing that Sacred Heart does that is really endearing is the “Baby Bells”. Everytime a newborn arrives they sound chimes through the PA system. Gregory and I notice nearly everytime, we kinda missed them at Seattle Children’s. Before we left on Monday, we had to ensure that his labs were solid. Which they were, except we were waiting on the results for his Tacrolimus level. (Tacro is his main “GVH” med. It supresses the immune system. We take a blood draw right before a dose to determine the level of the medication in his blood. At the lowest point. The trough.) Usually Gregory’s trough is between a 7 and a 9. Well…… Monday he hit a 23. Super high. We held his Tacro for the next 24 hours and had to go in, bright and early Tuesday, for a Tacro Level to determine what dosage he should be on. There are various, logical, reasons for him to through a high trough. I’m not going to get into them now, suffice it to say it’s not unusual. AnnMarie had spent the night so she got to go to clinic with us. Talk about one excited young OffSpring. She does not have a shy bone in her body and introduced herself as “AnnMarie. I’M the big sister. Gregory’s big sister.” The pride that she oozes at being Gregory’s big sister is heartbreaking. I have a feeling that Gregory has a lifelong champion. After Larry and I are long gone, I’m sure AnnMarie will be constanly reminding Gregory, “I’m the big sister.”
We were in just for a blood draw. This was done and we boogied out of there. Mom came out to sit with Gregory while I ran to do some much needed grocery shopping. I offered to take AnnMarie with me (I love spending time with ALL of my kids, one on one.) Gregory piped up and would not let her come with me, “Sissy! You stay here! You CAN’T go with Mommy!” I ran to the local store. While at the store I was cruising the aisles and thinking of all of Gregory’s favorite foods. Things he hasn’t been able to eat since November. Near the end of the trip I remembered Chips & Bean Dip. It was at this point that I started to loose it. I was standing near the magazine section with tears in my eyes. Before transplant Gregory could not get enough of Chips & Bean Dip. Before transplant we were trying desperately to get as much weight on him as possible. Man was it hard. We broke all kinds of dietary rules and gave him anything and everything he would eat. One of them was that horrid Frito Lay Bean Dip in a can. Up until the “sick” really set in (about 11 days post transplant), Gregory would down a whole can of that stuff in one sitting. *blech!* Thinking about the fact that I could offer it to him again, brought on the water works. I was buying GROCERIES for Gregory.
While I was there I ran into the mom from a newly diagnosed family. It was rather strange and actually comforting to run into her. Strange, I know. Their daughter Anna, was diagnosed with Hepatoblastoma on January 27 of this year. If you can, please visit their CaringBridge and drop a note. They are new, reeling and lost. I know many of you remember those first months. Thank you.
AnnMarie & Nana spent the afternoon with us and everyone had a blast. The clinic called to report his Tacro level, which was still nearly 12 and we changed his dosage to twice a day, instead of three times a day. Which meant that we got to drop TWO dosage times from his schedule. Almost all of his meds are every 12 hours. Tacro was the only one that was every 8 hours. Which meant he had meds at 8:00am, 4:00pm, 8:00pm and 12:00 am. Now we only have 8:00am and 8:00pm!!!! Still a ton of meds, but only twice a day. Yippee! (for now) The next two days were filled with lounging, sleeping, food, napping, food and lounging. Since he is on high dose steroids and I’m not sure how long the effects will last, I’ve let him have whatever he wants, for the last few days. (within reason & health, of course) His current favorites are shrimp that turns pink (fresh frozen, sauteed shrimp. Yes it turns pink when you cook it.), scrambled eggs, milk, french fries with “hot sauce” (ketchup) and noodles. With every bite of a highly anticipated “new” food comes the most interesting noises. “Mmmmmm. Oh. MMMMMM MMMMM. SOOOOO GOOOOOD! Oh. MMMmmmmmmm!” It’s like he is discovering food for the first time. He’s already polished off a 12 oz bag of shrimp. I need to get more, tomorrow, when Daddy comes out! I’m not sure how long this will last, so I am letting him revel in every morsel.
Friday morning we had clinic. Labs & exam. His labs are rock solid. Everything from his counts to every line of his nutritional panel. Kidney & liver function, too. This is the first time he hasn’t had supplemental magnesium, since transplant, and it’s solid. Albumin, IgG. Everything. Why? Steroids. His GVH was affecting much of his bodies abilites to function properly. We finally received word from Seattle Cancer Care Alliance and the plan is to start him on Sirolimus. Instead of Tacrolimus. We discontinued the Tacro today and will begin Sirolimus on Sunday. He will start out at 0.2ml a day. We will go in twice a week for Sirolimus levels to get him to a theraputic level. Once that is accomplished we will begin another, very slow, nine month steroid taper. Only time will tell. On the way home we grabbed McDonald’s. The first he’s had since November. He ordered a cheese burger, ketchup only. When I gave it to him, he picked it up, pointed at it and said “Mommy! I didn’t want THAT!” He was pointing at the hamburger. I carefully peeled the burger from the cheese and he scarfed down a cheese & ketchup, bun sandwich. This is what steroids do. Carbs, carbs and more carbs. One thing that Sirolimus does is raise your triglicerides. The fat in your blood. Once we begin it, I will need to heavily monitor his fat intake. Thankfully his glucose and sodium levels seem to have settled and he doesn’t need any intervention. Delicate dance, huh? We also spurged Friday night and he got his “spicy pizza”. Delivered cheese pizza. Gotta get it while we can.
We are still settling in, getting used to the new routine. He is far more active and getting around so much better than he did eight weeks ago. We are slowly upping the calorie content of his G Tube feeds so he can spend more time unhooked. He loves to help me around the house, or just sit at the table while I’m working in the kitchen. Gregory is beginning to re-appear. Then there are the severe, immediate and intense mood swings. Demanding & impatient. Sweet and cuddly. Emotional and weepy. Angry and frustrated. All within a thirty minute time period. I’m trying to let him be and show him patience. When we get HomeHome, I’m going to need to spread my time between all three kids and Gregory is going to have to re-learn how to share my time. It’s gonna be painful for everyone, but it is necessary. The hardest part will be sleeping time. We have slept next to one another for nearly every night of the last year. It will be hard on both of us. I LOVE sleeping with my OffSpring. All of them. I’m looking foward to climbing into bed with Curtis and AnnMarie, even if it’s only a couple of hours. Not quite sure how Curtis will like it, but I’m going to do it anyway. I have a feeling that he won’t mind, at least in the beginning.
Here we are, turning another page. With no expectation of how this therapy is going to work for Gregory. I’ve found that expectations simply leave me empty and saddened. I take each moment and embrace it for what it has to offer. Be it good, bad, indifferent. It is what it is. I’m quite impressed if you’ve managed to stick with me this far. Not only in this entry, but through these long 12 months. Yes, we are almost to our diagnosiversary. First one. Never in a million years did I think I would be honoring these things. Especially death aniversary’s. I do, though. With open arms and a warm heart. These moments need to be honored and remembered. Great pivitol moments in our’s and our children’s lives. I don’t know what tomorrow will bring, but I do know that I have a family that loves me and I them and we are together. Even if only in our hearts, for now. We love you, Daddy, Curtis & AnnMarie. Miss you like crazy. Can’t wait to be together. ’til later, gotta jet.
P.S. Curtis has a head cold. Crap.
Also. PSA: Do not drop your Kindle. Ever.