Next week I’ll be starting the next phase of my treatment, intensification. I had this week off, but it hasn’t felt that way because I have been dealing with daily migraines.

I’ve dealt with migraines for the last five years or so. I’ve learned a few of my triggers but for the most part they come on randomly and without warning. I have tried many different medications to help prevent them and in January of this year I started taking a low dose of atenolol (a beta blocker) and it seemed to be helping. Unfortunately while I was in the hospital I had issues with my blood pressure being low so they stopped it and I didn’t restart until this past week. It will take some time to have an effect.

I have had daily migraines for the last two weeks (possibly longer). At first it was mostly due to the lumbar punctures and radiation and was relieved by laying down. However the headaches changed over to migraines and aren’t fully relieved by anything. I’ve tried many medications but nothing helps. My team is working with me to try and find a solution and I definitely can’t wait to find something that helps.

Next week I’ll begin the intensification phase of treatment. This consists of ten rounds, each three weeks long. On the first day of each cycle I receive three types of chemo IV, doxorubicin, vincristine, and pegaspargase. On days 1-14 I’ll be taking an oral chemotherapy, the same one that I took during my CNS phase. In addition, on days 1-5 I’ll take high dose steroid. Days 15-21 will be a rest week with no treatments and then it will start all over with day one again.

It’ll be around 30 weeks total of treatment. I’m crossing my fingers that everything will go smoothly and I won’t have any issues but it’s hard to know. I’ve had all of these chemotherapy agents before but the pegaspargase is what may have caused the pancreatitis so I’m definitely nervous to have it again. I’ll be limiting my fats once I start so that I can try to help prevent any issues. I can only hope that this will help.

Luke has been doing well. He is still at 99% donor cells and aside from fatigue he feels pretty good. We even took a drive last weekend and Luke did some fishing. I just enjoyed the fresh air and sunshine. It was so nice to feel a sense normalcy even if just for a day. Luke didn’t catch anything but I could still see the joy and pure happiness on his face while casting and choosing his lures and bait.

That’s all I have for now. As always we greatly appreciate all of the love and support everyone has been sending our way. We feel surrounded by so much goodness. It’s nice to see that there are still so many kind and thoughtful people out there.

Love, LB