Winning battles one lumbar puncture at a time...

It was another decent day. Ollie woke talking and wanting to snuggle and be reassured about his lack of vision. I told him that he can't see because there is a war going on inside of his head, neck and spine where the chemo warriors are trying to blast out the lymphoma cells. Many battles are being fought, and one of them happened near his eyes, causing him to lose his vision. 

We know that there are fewer and fewer lymphoma cells in there (down to 16 in the cerebrospinal fluid today compared to 900 a week ago!!!), so we're winning the war, but have a few more battles to win first. Hopefully when we've won, his sight will come back. If not, we have started to tell him about people who live full lives who are vision challenged (Maja if you are reading this you are an awesome example that I share) to show him that life goes on and is full even if you can't see. 

In fact, the doctor wants him to start working with rehab both to get his strength and muscle tone back after over two weeks in bed, but also to start to learn how to navigate the world without the use of his eyes, just in case. We haven't given up trying other options, but in the meantime he needs to live his life, so we need to equip him to keep moving forward with or without sight.

His lumbar puncture went well this morning. In addition to the lower cell count, the pressure of his cerebrospinal fluid was normal! This explains his lack of significant pain the last two days. In fact, the nurses in the OR told me after his procedure that he was like a different kid from a week ago because this time he was lucid and had no pain.  

His oncologist met with me today to discuss the revised treatment plan in light of the fact that we're also doing the inter-thecal in his spine now. The new protocol calls for him to have different chemo drugs on different days for two weeks in a row. It started yesterday, so that means we'll be in hospital continuously for at least a month and very possibly more once we know the stem cell transplant plan when he have a confirmed donor. Ollie will not be happy about this, so it's something I can't tell him right away. To keep his morale up, we have decided to take things one day at a time and not look too far into the future right now. As a planner this is difficult for me, but necessary to manage his expectations and stress. His anxiety is much less now than a week ago and we want to try and keep things calm for him.

He slept a lot today, but after his procedure, I tried to start getting him interested in more tactile things today like stretchable putty, little toys he can feel and explore with his hands, smelly toys, etc. Mrs. Hatoum (Toni) also came by to bring him a few more to help including a squishy pooping llama, which he was delighted with! 

Our priest, Monsignor Hans came by for a visit today. He was very pleased with the way the prayer service went yesterday at school and acknowledged that it was likely the most spiritually engaged and reverent he has ever seen the kids and staff at St. George. Clearly even he was moved by the event. He said a special prayer over Ollie as he slept and Toni and I prayed, too. I feel very blessed to have him as a spiritual support and he has been a

comfort to my family.

Tonight Mario and I switched so that each of us could spend time with the other kid and I could get a break from the hospital. We had hoped that Abby could visit her brother, but she was at the pediatric clinic today for the tail end of a virus that she needs to ride out. So we masked up, snuggled the cat (who really misses me), ordered in, watched a movie, ate ice cream (thanks to principal Mrs. Philippe for the treat to help Abby and all of us feel better this week) and now we're in bed.

Hope you have had a cozy and warm evening with those you love, too!