The Big Bad Wolf

Everything can change in a heartbeat. 

Yesterday we were having a great evening playing Yahtzee as a family with our boy wonder beating us all with a little reading/decision-making help from his daddy.

Today he had bloodwork, a consult with the bone marrow transplant (BMT) team, an optomology exam and a consult with his entire Sick Kids team of doctors from BMT and Oncology. Basically the optomologist confirmed that his optic nerves are swollen and very different than a month ago, with a bit of bleeding as well. While there is more blood flow showing in these images, they also suggest that something is happening in his brain that is unexpected and needs to be figured out before we do ANYTHING else.

This means the radiation and stem cell transplant are on hold until more tests can be done. We were so close.

They explained to us today that IF this is his lymphoma progressing in his brain, the transplant will not fix him if we don't do something to get rid of the lymphoma that is there.

 

So tonight my big brave boy is back at Sick Kids Hospital with Mario waiting for a last minute MRI to hopefully tell us that he DOES NOT have more lymphoma in his brain.

To backtrack a moment, his last MRI at CHEO on March 20 was clear and his last lumbar puncture with intrathecal chemo last week at Sick Kids Hospital found no cells in his cerebrospinal fluid. This is good news, but they now have to do another lumbar puncture (likely Wednesday) as well to measure the pressure of the cerebrospinal fluid as the optomology team believes something is causing pressure on his optic nerve again. If it's not an increase in cerebrospinal fluid like last time, then it might just be his optic nerve trying to heal. The problem is because it's been lymphoma before they first have to assume that it's likely again.

The ophthalmologist was Dr. Leahy and is Australian. As an aside she is trying to get home to Australia, but cannot get home due to COVID-19. I am grateful that she is still here. She is brilliant and was patient with Ollie, who was very grumpy and difficult this morning. She was also finally able to explain to me where lymphoma might be hiding and affecting the optic nerve. See the little "V" on either side of the optic nerve below? 

She says, if lymphoma hid in one of those Vs it could potentially escape the somewhat inefficient intrathecal chemo (the BMT team told us IT chemo is not very good for lymphoma in the brain, but better in the spine, hence the need for head radiation) and if there was a small mass of lymphoma cells stuck on one side of the optic nerve in that V, it could touch and affect both nerves and therefore both eyes. Since he started losing vision in one eye at first, this makes a lot of sense to me. More sense than any other theory suggested so far. It would also explain why there is no obvious damage to the nerves in the previous scans.

His team of doctors assembled to tell me their concerns after the optomology exam. Mario had met me in the lobby before to take Ollie back to the condo as he was losing it and needed a nap. 

So I heard them out and asked what we would do if it is lymphoma again. They said they'd consult, but it might involve targeted radiation still and possibly the use of some new generation ALK-inhibitor drugs. The drugs would likely need to be taken for months before we'd know next steps which may or may not involve a stem cell transplant. They tried to talk about what we might need to think about if those didn't work, but I stopped them there because they started talking end of life and I wouldn't accept it.

I told them we need to cross each bridge in front of us as we get to it and we have no idea what those crossings look like yet. One day and one bridge at a time is how we're going to win this war. And every time we make a plan everything changes before we get to the end of it. I also assured them that while we do not ever want our child to suffer unnecessarily, there is nothing we wouldn't try as his parents to save him if it comes to that.

So we are doing another MRI (as Ollie said tonight, "I've got this...I've done this a ton of times already.") and another LP and another consult after and then another plan.

After the meeting before leaving the hospital, I went in search of the chapel. Sick Kids has a real chapel (not a cloud room, Charity!) and also a Muslim prayer room next door.

Yesterday I watched Palm Sunday mass virtually at my church, St. George on their YouTube channel. It was a great comfort and I reflected on Jesus' suffering for all of us and Mary's sacrifice as a mother to save us all. 

Today in the chapel I wept and begged God, Jesus, Mary, my grandparents and anyone up there with any influence to save my son. To have the MRI and the LP show no signs of lymphoma and to allow us to go on with the transplant plan. To take me if someone had to be sacrificed.

There's so much I don't understand as smart and spiritual as I am. Like why would my daughter have to go through all of this if ultimately she won't be able to even try to save her brother through her stem cells? And why does an innocent 7 year old have to go through any of this? And if I've consciously lived my entire life trying to do the right thing and be a good person, why must I bear all of this agony and pain? I honestly don't believe that my good God would deliberately expect us all to suffer like this. I try to be positive and see all of the lessons in all of this daily. I practice gratitude. I look for the silver lining and my half full glass, but darn it, I want a big, full, tall glass for once and I deserve it. WE deserve it.

So humbly I come to you again, asking for your prayers and positivity. I sometimes feel like the boy who cried wolf, but I swear I am not crying wolf. Lymphoma is a real, vicious and uncaring wolf determined to take my son and we will fight with every breath in our bodies to kill that wolf, but with your help I think we can do it more quickly together. As always you have my unending love and gratitude for caring about us.