Improvement
We just wanted to share a quick update:
Rucker is stable but still very sleepy. He doesn’t like stay awake for more than a couple of minutes. This could be a result of increased pressure, disease around his brain, and/or side effects of radiation (he’s been able to get three rounds so far). The good news is he hasn’t been in pain (or it has been pretty minimal). His stats are much improved. His heart rate has normalized today from where it has been much of past few days (it had been VERY low). He is off of oxygen support and all of his meds have been switched from IV to oral. He had been having trouble eating for the last couple of weeks and even though he is feeling better now, he still can’t stay awake long enough to eat anything substantial. So we decided to put the NG tube in to increase his calorie intake. We did the NG tube early in his treatment while he was receiving intensive chemotherapy, so he was prepared for it this time and did an excellent job when the nurse inserted it. Hopefully it won’t be long term, but for now it’s a relief to have. Prior to the NG, he had IV nutrition for the last week, and he finally seems hearty and better fed than he has been in weeks. And although he is sleepy, he’s very responsive and “with it” when you ask him questions, and he continues to boss us around when he wants something. He even walked (although heavily assisted by John) back to the bed from the bathroom today. Slowly but surely he seems to be getting stronger. When the palliative doctor came in to see him before the weekend, she couldn’t believe the 180 he had done since Wednesday when she was called in. She told us he is truly a miracle and then looked at him and said, “Rucker, you must have a lot of people praying for you.” We just smiled and said “you have no idea.”
We wanted to send this update along to let everyone know that there is still hope and a plan is forming, which is a lot more than we could say Wednesday afternoon! John and Dr. Wadhwa are working hard on a plan to continue to treat the newly discovered CNS disease after radiation (more to come on that soon, but we’re hoping to get access to a targeted drug at Memorial Sloan Kettering in NY), while also treating his other known systemic disease. More to come this week. But the plan right now is to do radiation Monday and Tuesday and then go home if he continues to improve. Now that he’s off all IV interventions, we should be able to continue his care at home where he will be happier and more comfortable.
We know there are some people out there who really like specifics for their prayers (and we sure appreciate them), so here are some requests:
1) For continued improvement in pain relief;
2) For radiation to have an impact on the disease and provide pain relief;
3) For the MSK drug to be made available to Rucker, and to be effective;
4) For his newly found CNS disease to be eradicated; and
5) For us to find the best next regimen to treat his other preexisting disease.
I also want to say Happy Father’s Day to John, who is simply the most amazing dad. What he has done for Rucker is indescribable. His constant research, instincts and unrelenting desire to cure our son (and refusal to take no for an answer) is what has gotten us this far. He’s the captain of our ship, and there’s no one else I’d rather fight this battle with. I love you very much and am so grateful for all you do for us.
Keep the prayers and good energy coming - We’re not giving up!
