We heard from Brian's doctor in Texas. A week ago we got an e-mail from Dr. McClain that said the MRI was good but that he was out of town and wanted to look back at his notes before answering any of our questions. Our immediate response was an overwhelming emotion of HALLELUJAH! Brian's done!!! Then it shifted to wait a minute... hold everything! What if the MRI being good means that he can read it, not that it was good news but a good image to work with?! Over the weekend we waited to hear back from the doctor on Monday as he said he would respond once he was back in office. That weekend (last weekend) my Aunt Carol passed away. On Monday we were headed over to Panama City to be with family and attend her funeral. We were on the edge of our seats all weekend so on Monday afternoon we e-mailed Dr. McClain. He responded pretty quickly. Because of the funeral and traveling out of town, to immediately having a doctors appointment here at Sacred Heart, updating the blog kinda got left out. I am so sorry.
Here is what we heard from Doctor McClain:
Here is my plan: I recommend stopping treatment now, but wait 3 months before
taking the port out. He should have office visits with a CBC and liver function
tests every 3 months for one year, every 6 months for 2 years, then annually to
assess his neurological function and monitor for any evidence of growth delay,
hypothyroidism, hyogonadism, or hypoadrenalism. An MRI of the brain should be
done annually which we can schedule the day ahead of, or same day of your
Ken McClain M.D.
We take that as good news in that Brian is currently not taking chemo. However, because we have to leave the port in he must have it flushed every month. We did that late Wednesday afternoon and it was horrible. Brian DOES NOT understand that he is not getting chemo. If you have to access his port, he calls it chemo. He put up quite a fight and wailed and screamed. We get to do that a couple more times, once in June and once in July. Then at the beginning of August we head back to Texas for Brian to see Dr McClain and get assessed. If all is still good we will hopefully be permitted to take his port out. If not, we will cross that bridge when we get to it. We understand the delay in removing the port. Given Brian's history it would be unwise to remove it so early "off treatment". But we are SO READY to get it out of Brian's chest.
Please pray that the next three months (well, and forever...) will be without LCH activity. That Brian's disease is resolved and he can live a "normal" childhood. I say normal with quotes because you saw the above. Even if everything goes great he will still frequent doctors offices, labs, radiology, etc. By the time he is done with this time table, again if all things go well, he will be over ten years old. It was one month after his third birthday that he was diagnosed. He doesn't remember anything other than chemo, ports, needles, bloodwork, scans, etc.
I am not sure if I have mentioned this before or not, but not too long ago we were all chatting about extra curricular activities. The conversation went something like this, "Ansley has piano and dance; William has guitar and piano; Olivia has dance..." and then Brian piped up with, "and I have chemo!"
That completely ripped our parents hearts out. Over the years we have repeatedly asked Brian if there was something he was interested in learning or doing. There hasn't been. He either hasn't been interested or hasn't had the energy. Legos have kinda been his happy place. We are hoping that in three months time that Brian will be able to have his port removed. Because that will feel like a real beginning of the end. :-)
Thank you for continuing to pray for Brian and our family.