Hi Team JJ! Even though we have been trying to give brief updates about JJ’s progress on Facebook, we know some people don’t use FB and still want to know what’s going on.
JJ checked into the hospital on 9/10/12. He immediately had his central line inserted directly into his chest so that he would be able to have his blood drawn and his IV meds without having to be poked. While it is a blessing to have his line back in, it is also his largest chance at infection.
JJ did really well with his initial 6 days of super chemo. He maintained an appetite and wanted to go to the playroom every day. His stem cell/bone marrow transplant was on Tuesday, 9/18. He handled it like a champ, not even throwing up (which frequently happens). His aunty Carolyn was here for the festivities, holding his hand throughout the whole thing. The funny thing about the transplant is the unfortunate smell. The stem cells are frozen in a preservative that smells like rotten stewed tomatoes and garlic, which seeps out of the pores for 24 hours after transplant. Its definitely a smell that sticks in your memory.
After his transplant, JJ continued to truck right along. He still felt well and was still managing to eat. Around day 3 post-transplant, the yuckies started to set in. The effects of the chemo take a few days to show up and when they finally did, it hit him hard. When that happened, JJ stopped eating and drinking completely because everything that went in immediately came back up. They put him on IV nutrition to ensure that he is getting everything that he needs, but the goal is to get him eating again as soon as possible.
The last few days have been pretty rough. We’ve tried to post pictures of JJ where he looks happy, but the truth is, he feels like absolute crap. He throws up if he even hears anything that has to do with food and he can’t even keep a sip of water down. Yesterday, the only time he lifted his head off of his pillow was to vomit and he only said about 5 words all day long. He’s incredibly weak because his hemoglobin has gotten incredibly low (which is normal at this point in his recovery) so he’ll be getting a blood transfusion this afternoon. Hopefully that’ll give him a little color because he’s white as a sheet and his heart is starting to murmur (also normal when hemoglobin is low). He’s developing mucositis (extreme inflammation and ulceration of the mucus membranes lining the intestinal tract), which is a very painful and often debilitating side-effect of cancer treatment. It causes horrible stomach aches (from swallowing all the mucus), sore throats (from the inflammation and vomiting), and very severe mouth sores and swollen lips, which makes it almost impossible to eat, swallow, or even talk. Last time we went through treatment, he never got any mucositis, but this time he isn’t so lucky.
The doctors have assured us that he is bottoming out right now but that he will begin to show improvement between day 10 and day 15 (today is day 6). This morning his ANC (the measurement of total infection fighting ability) is zero (normal range is 2,500-6,000); His white blood cells (overall immune system function) are at less than 100 (normal is between 5,000 and 14,000). His platelets and hemoglobin are also incredibly low, so he’ll receive blood today for the hemoglobin and probably have a platelet transfusion in the next couple of days.
As bad as all the side effects are, we know that it means that the drugs are strong and are doing their jobs. We also know that he’s a tough little guy and that his little body is going to push through this. We can’t wait until our family is reunited in the comfort of our own home. We miss Jaxson like crazy (I haven’t seen him in 8 days) and Nana Nancy says he misses JJ too much! It’s much different this time around because the boys know that they are separated and really feel the loss. JJ told me this morning that he wants to go home to see his brother. It absolutely breaks my heart. It’s definitely ugly right now, but it’s bound to get better. Without rain, there would be no rainbows…but man, this storm sucks!