Tyler’s post on Facebook today was “Home Sweet Hopkins.” Here we are again, this time for chemo course #3.
To update you on Tyler’s home visit, which started a week ago today, it was kind of topsy turvy. He certainly wasn’t the same boy he was on his first home visit. He just never quite felt very well, was cold all the time, and had a lot of difficulty eating and sleeping. He had one ER trip for central line issues and one full clinic day which really wiped him out. However, having him home was an incredible blessing for all of us!
Yesterday, we had a truly wonderful Thanksgiving. My parents, brother, sister, and their families came in from Virginia and Pennsylvania. Michelle and TJ decided to stay in town so that they could also join us. The most amazing part was that Ron and I didn’t have to lift a finger to cook…our guests brought everything necessary for a delicious meal together with them! Also, it was very special that Tyler’s appetite finally started to increase that day, so he was able to enjoy all the food with us. We are truly blessed and have so much to be thankful for!
Course #3 will be slightly different from the first two. It lasts only 5 days, and he will receive only two chemos instead of three. One is being increased from a regular dose to a high dose. With the higher dose comes new side effects. The chemo’s toxins are secreted in the tears, which causes conjunctivitis. Tyler will be receiving steroid eye drops every 6 hours to hopefully lessen this effect. The other typical side effect is fever, aches, and flu-like symptoms. And of course, it can cause the mucositis, vomiting, and rashes he had last time and a whole host of other things which we try not to think too much about. On day six, they will attempt to reintroduce the Sorafenib to Tyler, but this time at half dose, which is the protocol after the grade-three skin toxicity he suffered from last time. We’re praying that goes well, because the Sorafenib targets his FLT-3 mutation which is what makes Tyler’s sub-type of AML so likely to relapse. We really want him to receive this drug, so we’re praying his body will tolerate it better this time!
If this course and recovery period follow the same pattern as the last two, Tyler may actually be home for Christmas! So far his home visits fell on his birthday and Thanksgiving; it would really be something if Christmas could be at home, too! The doctors tell us we’re on target for the pre-transplant chemo and the transplant itself to happen sometime in early January. But right now, we’re trying just to focus on this course.
Tyler is truly a brave young man, because he returned to the hospital today knowing full well what he could be facing. Despite that, he didn’t drag his feet this morning or complain about coming back. He’s such an amazing kid!
When Tyler and I arrived this morning at Hopkins, we discovered the hospital is now under RSV/flu precautions. Tyler’s been dreading the official start of flu season at the hospital because it means that only those over 16 can visit and all visitors must be assessed for signs of illness and wear masks during their visits. Like everything else, Tyler will adjust to this new hurdle.
We hope you each had a wonderful Thanksgiving yesterday! It’s such a special time of year, and is a great reminder to be thankful in all circumstances! We’ve never been more mindful of that than we are this year. As always, we are ever grateful for your continued prayers!