Ollie vs. Lymphoma - Act III

It's back. A relapse of lymphoma in his cerebrospinal fluid. It's only been a couple of weeks off of the full chemo and it's already back. Only 18 cells, but persistent little jerks who have been agitating his optic nerves and causing those terrible headaches again. 

So the stem cell transplant is off of the table unless we can get rid of these again soon and clearly the lumbar punctures with intrathecal chemo were not enough to put his cancer into remission long enough for us to get the transplant. 

They've also basically told us there's little hope of him seeing much again because they can now see that the optic nerve was deprived of oxygen in various areas and that it's been too long and is not recoverable. We both feel that this is so secondary to the bigger issue. We've always said we can help him have a full life even if he's blind after all of this. 

It feels like every time we let ourselves hope that we're going to win and can see the end zone, the ball gets fumbled and we lose the control/possession of it. We're so close, yet so far away from finishing.

After MRIs, X-rays, an EKG, a lumbar puncture and neurology exams today, the doctors definitively know what we need to try next. Try because now there really is no roadmap to curing his cancer because the very rare type he had is now even rarer because of this second relapse. And statistically the odds of beating this are now smaller. And for a few moments today I felt that small frightening place. And then I got out of it and reminded myself that myself and my family have beaten many statistics already. 

For example,with a history of addiction in my family, I was more likely to be an addict, but am not. Since no one in my family had ever gone to university, I was very unlikely to get in and go, but I did. Mario was in a terrible car accident with his family as a small child and his parents and older sister passed away as a result, but he survived and had over a dozen skin grafts over the years. They weren't even sure if he'd walk again, but he did. 

We are a family of fighters and statistics beaters, so that's what we'll keep doing.

Thankfully when Dr. Alexander came in to talk to us about next steps I happened to have Sonia the social worker there, so I was grateful for the support. Mario was on speaker phone since with COVID-19 we can only had one parent with Ollie at a time right now. Sonia also said we can get special permission to have all of us at the hospital when needed, even Abby, especially since she's his stem cell donor whether or not it goes ahead. She said it should be possible to get everyone there for Easter of Ollie is still admitted. He was admitted last night and remains in hospital for observation and better pain management for at least the next few days.

So the next steps are new cancer meds and a high dose steroid to reduce the short term inflammation in his brain. Ollie began taking a new generation ALK-Inhibitor called Ceritinib tonight. If he can take them and they work to get rid of his active lymphoma again, we have a chance at radiation and stem cell transplant.

Honestly getting him.to take this drug  seemed like a huge obstacle. Partly because he hates taking oral medicines and has had a lot of difficulty getting them down. Plus, because these are adult meds that have had clinical trials for children, they're still really geared to the adult world, so they're huge and he has to take 3 of them!

Side note: I am so grateful for the health insurance that Mario and I have through our employers as the new med which is $6,000 for a months supply is fully paid for.

Trying to convince him that he needed to take these meds was difficult this evening. I called Daddy and Abby and the three of us tried to explain to him why it was so very important for him to take them. He kept saying, "I can't. I can't!" And so we asked him if he wanted to stay with us or not. What a conversation to have to have with a 7 year old. We've tried to be honest with him in an age appropriate way from the beginning because it is his body and we don't want to have whispered conversations around him. 

It was so sad. We all tried to convince him of why he needed to take the meds for all of us to keep us together. Abby started a monologue about everything he needed to be there for like family vacations, Christmases, graduations, her wedding and his, for their children to grow up together and to celebrate their 100th birthdays together. It was sweet and silly and so honestly raw that it broke my heart.

So we got off the phone and got the nurse to give him some nausea meds, he ate a croissant and then I started trying to encourage him to take them. It took a while, but he finally agreed to try it with yoghurt. I chanted over and over, "You can do it. You can do it." And told him how brave and strong he is and has been through everything and this is nothing compared to all of that! He took the first one and swallowed it down no problem!!! I think I was more excited than I was at his birth. He then threw back the second and third without complaint and was so pleased he asked to call Daddy and Abby. When we did he explained that he had done it and then Mario, Abby and I all cried and praised him so much. He then asked if Daddy could come to the hospital to spend the night and bring Beyblades. LOL

Abby told me later that after their earlier conversation with Ollie where we tried to convince him he had to take the medicine, she and Mario had prayed to God, Jesus, Mary and everyone they knew in heaven including Mario's parents to plead intercede and help Ollie to take the meds. Before all of this, my husband did not practice his faith. Now he practices it daily and we each pray with the kids often multiple times a day.

After we switched and I was back at the condo with Abby, Ollie called me to tell me that he did want to stay with all of us and he would do it every night he had to and Dad could help him the next time. 

So tonight despite everything we are feeling like we're going to get through this. If Ollie can do the hard things and is willing to fight, so are we. Frankly Mario and I had already agreed we wouldn't give up even if Ollie tried to. This family of fighters is ready to banish lymphoma once and for all. As Ollie says, we'll kick it in the teeth.

Please keep the prayers and positivity coming. We are feeling it. Your messages, likes, and check ins are all so appreciated. Grateful also for the St. George School staff online prayer circle and the Alpha online rosary session that many of you joined tonight. We are feeling the love of our family, friends and community today even if we are physically far from all of you.