MRIs, CTs and LPs Oh My

Yesterday was another eventful day. 

Ollie wasn't any better, so he had an MRI to see if they could detect any blood clots or masses on his brain that could be lymphoma and might be causing the blindness.

Charity kindly came up and brought me Eucharist since I hadn't been to mass in weeks. Mario arrived to wait with me after attending mass and confirmation prep (at the insistence of Abby), while Abby was at a friend's for the afternoon. The MRI took twice as long as they said it would because they took extra images, but as Mario and I waited I was stressed thinking he had a seizure or stored breathing in there as he has been experiencing breathing issues and I was now starting to feel that many of his issues could be symptoms of seizures. Mario kept rubbing my back and telling me not too sad so much into the time and he was right. End result, more pics, but no more answers or evidence of what was causing everything that seemed unrelated to the lymphoma.

Last night Maria came up to keep me company since Mario went home to be with Abby. Ollie was having a tough night for pain and hallucinations caused by his pain medications. Maria jumped right in and rubbed Ollie' s feet (usually Mario's job) while I rubbed his head to help him through the pain. It is really emotional to do all of this and Maria is my kindred spirit in that she feels deeply and has incredible empathy too. She loves Ollie and so I knew it was hard for her, but she stayed and lovingly helped us until he was settled. Naturally in Maria fashion she also brought me enough delicious food to feed an army. I am so very blessed to have such generous and selfless friends.

Around 11 pm I noticed signs that Ollie had what I suspected was a seizure again. After when he started to talk his speech was slurred, his myth drooping on one side and his arm was heavy and weak. I was trying not to panic, but was certain he'd had a stroke.

Our ICU nurse Kim was incredible, seasoned and agreed with me that it was likely stroke or seizure and advocated for Ollie to get an emergency CT. They brought in a technician for it at midnight. We had an entourage of doctors and nurses with equipment, monitors, crash cart on their back, etc. and the technician was so kind. I thanked her profusely before and after for coming. Turns out the CT was clean so now an EEG is scheduled for tomorrow to look at possible seizures. 

In the meantime they found that his sodium was know, so started boosting those and his slurred speech and weakness stared to resolve themselves. Low sodium can also cause seizures.

Now I am completely convinced. There are many general symptoms or warning signs of a seizure. Here's what I've seen on Ollie that we all thought were random and unrelated until now::

• Staring

• Jerking movements of the arms and legs

• Stiffening of the body

• Breathing problems or stopping breathing

• Loss of bowel or bladder control

• Not responding to noise or words for brief periods

• Appearing confused or in distress

• Periods of rapid eye blinking and staring 

• Lips may become tinted blue 

• Breathing may not be normal. 

• After the seizure, may be sleepy or confused.

Today we had optomology, neurology, and acute pain services consults. Not bad for a Sunday when the hospital is quiet. Then all the docs had a meeting and our oncologists came to us with a modified plan. Having consulted more international experts, they were now recommending we go ahead this evening with another lumbar puncture to relieve the pressure on his brain and do the inter-thecal (injection into spinal fluid) chemo treatment again to be followed with another on Thursday.

Next it'll be full body radiation as opposed to just head and this would be done as part of bone marrow transplant prep at Sick Kids Hospital in Toronto. 

Lastly, it's donor stem cell transplant as opposed to using his own. That means Abby, Mario and I are his most likely matches. We talked to Abby and she did not hesitate to say she'd do anything to save her brother. I really hope she doesn't have to add that seems too much to put on her. I hope and suspect it's me. We're being tested tomorrow. If none of us are a match, we'll look to a match on the  international stem cell registry.

Prime candidates for donation are 17-35 year olds, though, so that means if it weren't for us being his parents, we couldn't donate. :-(

Tonight while sedated Ollie had his LP with chemo (they took off a LOT of extra fluid), an Optomology exam of the back of his eyes, an NG feeding tube inserted in his nose so we can start prepping him to eat real food and a catheter put in to better measure sodium in his urine. The procedures went well, but he was not happy about the last two.

Thanks to all week have reached out to help in new ways like shoveling snow, bringing things to hospital and belong us when we get to Toronto. We are so blessed to have your support.

Will update as we can. Hugs!