Today was kind of a weird day. Gregory hit the hay waaaaaay too late, last night. Wake up time was pretty rough for him, but I managed to get his Zofran, breakfast and meds done before heading out for clinic. Nasal wash was done (those are not fun). We had a food preparation class, which we attended without troubles and then a “preparing for home” class. Gregory has been wearing a mask, ever since we arrived. We are on respitory isolation, everyone knows it. Whenever we are in an exam or conference room, Gregory gets to remove his mask and everyone who enters has to gown, mask and glove up. We walked into our second class and the person running the class got all up in my face over him and his mask. I don’t know why i thought we could attend these classes together. It didn’t even dawn on me that he shouldn’t be there. This person was all “Does he have a cold?”, “He can’t be in here?” and not in a polite way. Very abrupt and borderline rude. In retrospect, it is probably just the way she is and had absolutely nothing to do with us. It just felt personal, at the time. My response was to be a little dumb founded. I paused for a split second and said, “And the solution is………..?” Not in a snarky tone, just kinda like “Well, if you are going to tell me I can’t take this class I need, you better have an alternative.” We had an hour and a half to kill before our next appointment. We were going to go off campus for a little bit, then it dawned on me that we might be able to get the last bit moved. We went up to the transplant floor and the receptionist was so helpful about letting me know that I can take this class at anytime between now and hospital discharge. They run the classes on a routine basis and I just need to show up for one. Whew! That is the answer I was looking for. Our last meeting was a quick check-in with the nutritionist. She gladly agreed to see us right then and there. It lasted all of 15 minutes and we were outa there.
The nutritionist, Paula, told us that Gregory needs to be at 13.3 kilos (29.3). Ugh! He likes to be between 12.8 (28.2 pounds) and 13.2 (29 pounds) kilos. His weight today was 13.1. Sounds like a negligible amount, doesn’t it. Well, it’s not. I like to think of it this way, four sticks of butter is one pound. When we checked into the hospital, post puking, Gregory was 12.4 kilos (27.3 pounds). When we checked out on Sunday he was an even 13 kilos (28.6 pounds). A pound and a third difference. Five and a little more sticks of butter. For a kid his size that’s ALOT. She also said that ideally, he really should be at 14 kilos (30.8 pounds). Gregory has never been anywhere close to that. He has always been a super light eater and his weight has been stable forever. I honestly cannot remember the last time he had a growth spurt. Which is probably related to all this, too. How can you grow if you aren’t properly producing a crucial part of your body’s system? He also is an incredibly picky eater, who eats tiny portions. Unless it’s tortilla chips and bean dip. I think I am going to keep Frito Lay in business. He can finish a can of bean dip in one sitting. He did it once. I couldn’t believe it. He finished a can in two sittings, since we have been here. He will not eat milkshakes, breakfast shakes, a normal portion of ice cream. Never more than one cookie. Never more than a handful of fries. Never a whole McDonald’s cheeseburger. I’ve been beefing up his milk. This is one thing he will drink alot of. I add powdered milk to his whole milk. We call it Gregory’s Milk. Here’s the kicker. Powdered milk is NON-FAT! What? I get it, but that means Gregory doesnt get “it”. He has always gotten whatever he wants to eat, whenever he wants it. Now I just need to try and find high fat/calorie foods that he will eat.
He’s been awfully irritable, tonight. Not quite sure why and he’s been tossing, turning and crying/complaining in his sleep. I hope it is transitory. He’s been off the 6mp for two weeks, now and I’m curious to see what his numbers are doing. It could simply be that he could use a Red Cell Transfusion. We will know, tomorrow.
Things are proceeding. He will have his central line changed out on Thursday. He will have a doulbe lumen, instead of a single.
I left a message for Jennifer at Ped Onc back HomeHome and she very kindly forwarded me the update that she sent around to the staff. It was cool to see that this is the way they handle long distance updates. I’ve noticed another difference between clinic at HomeHome and SCCA. In Spokane, I always felt like an outsider and kind of a poser. Yes, Gregory has cancer, but we were not actively undergoing treatment. I didn’t feel like we were part of the club. I didn’t have treatment stories to share or similar experiences. Just a diagnosis and a future plan. Don’t get me wrong. We were actively managing his cancer. I am acutely aware of THAT fact. Over here, it’s completly different. While completely the same. We are actively pursuing treatment, but we are surround by adult patients. I have never experienced so much rubber-necking. (Even in my early 20’s, ha ha!) The sight of this little, masked, munchkin of delight throws everyone a little off. It’s my understanding that JMML is mostly diagnosed prior to 12 months of age. I don’t know the statistics for Gregory’s age group and BMT. I would be curious to see the age breakdown. Needless to say, he is a very rare specimen. It’s a good thing he is OK with all the attention. I can’t decide though, what gets the attention more. ‘Cause everytime someone interacts with him it’s, “Oh!! Isn’t he/Aren’t you cute!! And I LOVE your sweater!” These two compliments are never far apart. Truth be told, I love it. I had nothing to do with his cuteness, but I DID make the sweater.
I’m fairly certain I’ll be back on here, tonight. I’ve got more clammoring around. I post pictures daily, here.
I need to do a thank you post, soon. Please know that I hold ALL of you in my heart. ’til later, gotta jet!