+100 Days Post Stem Cell Transplant

Wednesday was +100 days post stem cell transplant and scans day. We were at CHEO from 12:45 pm to 6:15pm. Ollie was incredible. I think it might have been his best day outpatient at CHEO ever. 

 He is now a totally calm and cool pro at getting pokes and didn't stress at all about getting his poke to have the IV inserted for the CT and MRI contrasts. 

He had been concerned about drinking the contrast for the CT, but thankfully I had a triple Pushpop sucker in his bag and he took licks in between and got it all down no problem. That's a pro-tip. Always have suckers, ring pops, etc. when you take your kid for tests in hospital. Thank goodness I had left some in our bag!

His ECG was quick and uneventful.

We got Llama Llama Blue Pajamas out to help with the scans. He's been in every scan Ollie has ever had. Most internally photographed Llama ever! 😜

CT went so great! We had two of our favourite imaging helpers in Sarah (the tech) and Jean (the nurse). Both know Ollie from so many previous scans and were happy to see Llama and talk about Ollie's Pizza. As always I was thankful for these amazing women who are so patient and kind. 

We bumped into Jamie at CHEO after the CT (we always seem to have radar and come together by happenstance often) and she had a few minutes to come back to MDU and hang out with us between meetings. She marveled at the difference in Ollie (last she really saw him was in June pre-transplant) and couldn't get over his returning energy level.

The MRI was backed up due to an unexpected trauma, so we waited an extra 35 minutes before we went in. Normally Ollie would have been so upset by this, but he took it into stride, only asking a few times when they were coming. When they came to get him, wouldn't you know it, we had the same technician that we had at our very first MRI at CHEO last year in November 1st. Complete deja vu.

They're taking extra COVID precautions to keep the MRI safe and clean, so he was completely PPE-ed and thought it was funny. 

I opted to sit in the MRI room with him as I had the first time and not since (Mario did his last MRI with him at Sick Kids and for all of the other MRIs he was sedated so they didn't allow parents in). I was stressed, but didn't realize how triggering this would be. From the moment I sat down in the hard red plastic chair and donned the red and black ear protectors, I felt anxious. Ollie appeared cool as a cucumber. 

The minute the machine started banging I could feel my heart begin to beat faster and escalate with each series of noises. I started to hold my breath and feel overwhelmed. Thankfully at that moment I remembered the words sent by my therapist in an email that morning. "Please try to exhale and stick to the present moment as much as possible." I dragged myself back from the panicked feeling I had in his first scan when we were so stressed and didn't know what he had, but knew it didn't look good. I took deep breaths and reminded myself that we got through it all and we're okay. That today was just a formality to confirm that he is as well as we can see he is.

It was a long hour and since I had to leave my metal watch and my phone in a locker, I had no idea how much time has passed. No clock in there, either!  Ollie was a champ. In about the last 12 minutes (3 scans of about 4 minutes each passed) Ollie asked loudly when he'd be done. Then he continued to be calm and still for the last scans, even when they came in to inject the dye in his IV. I remember vividly him freaking out that first time. 

In fact a few minutes later when he was done, I told the technician and her colleague about that first time and how kind she had been to Ollie when he freaked out, giving him a second chance to redo the scans and how that had shaped how we approached tests all year. Then Ollie told her about his Ollie Pizza and turns out she lives next door to the Hanna family who owns Gabriel Pizza! I love that about Ottawa. In a city of a million people you can still have so many people in common and so few degrees of separation. 

That was it for our day. Because he was amazing, he had been allowed to choose a new Lego set in the gift shop. He loves going there because truly it is the only 

store he's been allowed to shop in physically in a year. A kid who hated shopping with me before now wishes he could go into ANY store with me.

Now nothing left to do but wait for results. Our oncologist knows how much Ollie hates waiting and asked if okay as usual to call us with results, which was great. Last night Ollie was concerned about the results. I told him we'd already kicked cancer out twice this year with remissions and while I sincerely felt that he was well and desperately hoped we'd never have to battle cancer again, we'd fight it as many times as we had to in order to get him well and keep him with us. We fight as one. That reassured him and we agreed to just try to have a good day today.

And it was a good day. Ollie's Vision Itinerant teacher had arranged for him to be online with three other boys (all 8 and in grade 3) who were also part of the blind and low vision program. Ollie was so happy to meet kids like him. We had chatted with the Vision Itinerant Team Lead back in June to plan Ollie's return to school with this program, so Ollie was familiar with her already. She did a terrific job taking the boys through a story and tactile craft. She wove in some Braille and knowing Ollie couldn't yet read a lot in Braille, she had him type out the first letter of each word in Braille and praised him at always knowing the right dots for each letter considering he'd just learned Braille this summer. He was beyond thrilled. At the end he enthusiastically agreed that the group should do this again soon. He rarely gets this excited about anything school related. Connecting with kids like him was so good for his mental health.

This afternoon the kids had their second private session with Kids Kicking Cancer. Senseis Lyne and Cody were so responsive to his needs. They knew last time he really wanted to do real karate moves, so they started with stretches, telling the kids that you always stretch before a fight.

We cracked up at Chewbacca the cat joining the stretching...he seemed to be hanging on Sensei Cody's every word! 😄

When Sensei Cody realized Ollie was getting confused about a move and couldn't keep up, he suggested Ollie lead the count. This was so perfect as it made Ollie feel powerful instead of weak and slow. His energy and motion is coming back but some things are still hard for him. This made him set the pace and because of it, he even pushed himself to do more.

Ollie finally got to do stances and punches. He was so thrilled and proud of himself. He was elated to do the karate yells, too! 😄

For safe sparring, Sensei asked me to get a pillow. My brilliant silly boy suggested we bring the enormous bear he was given in hospital by the staff of the Calendar Club down instead. The bear has never been given a name, but Sensei Lyne insisted that an opponent needed a name, so he became Tom the Bear. The kids had fun taking turns sparring with Tom safely. 

The final breathing and relaxation exercise that Sensei Lyne took them through was calming and cleansing. I could see the tension leaving both kids and by extension, I felt calmer. 

The timing could not have been better since right after class I got the call from Dr. Brianna (Empringham). She explained that they had compared his scans from relapse in January and April and confirmed that the MRI looked better than his June remission scan. CLEAR. In fact they can see that the inflammation in his optic nerves had gone way down, although there was still a bit detected. She explained that they'd done the same with his CT scan as well. 

Only issue in his CT was the hip osteopaenia that they already knew from his bone density test last week. They'll do an x-ray of his pelvis on Monday and we're seeing the bone specialist and endocrinologist next week anyways to formulate a plan to improve this. 

Otherwise, scans were CLEAR.

COMPLETE REMISSION. 

ALLELUJAH!

Shortly thereafter, generous friend Tara (and Ollie's friend and classmate Will's mom) dropped by and left Suzy Q doughnuts on our porch, knowing we were waiting on results and they turned out to be Ollie's "victory doughnuts" as he dubbed them. Delicious victory!

 After dinner (of what else but Ollie Pizza from Gabriel Pizza?!), we finally carved our huge pumpkins chosen at the Parkdale Market this week (too risky for us to brave a pumpkin patch this year). We put on Halloween tunes and danced and sang while carving.

We're obviously not going out this year (couldn't really have even without COVID), but rituals and traditions are important and we cannot skip things just because things aren't normal (boy did we learn that over the past year).

This was the first real year that Ollie was big enough to do much of it himself. My heart sang that his blindness didn't deter his joy for it this year. He scooped goop vigorously and happily. 

Abby and Daddy worked on hers. Mario was excited to use the new pumpkin carving drill I bought super on sale after Halloween this year. LOL

Ollie explained in detail how he wanted his scary pumpkin to look. He helped me cut and took out the carved pieces. He felt each cut after and declared it perfectly spooky. 

Abby did the goop scooping and design, but left the carving to Daddy. Their final result was great.

Just as we were finishing up, M-F and Stephen stopped by and insisted we all come out for a distanced porch visit. We had texted them as well as family add a few close friends who have been there on this journey with us every step of the way, so they came with drinks to toast our good fortune and Ollie's health. 

We are feeling so very blessed and thankful. It's been a long and often agonizing road, but we're finally on the healing path of wellness. We're certainly not done and Ollie will continue to be monitored weekly at CHEO over the next few months, but now we know definitively that it is possible to keep him in remission for longer than a few weeks and that his system has truly been reset by the transplant. 

Nevertheless, cancer is a lifelong scourge in many ways with its many side effects (some that we may not see for years) and the possibility that it could always come back. We know families who have had the stem cell transplant and still end up relapsing. So Ollie continues on the one immunosuppressants and his Lorlatinib as a maintenance drug, likely until a year post transplant. 

We'll cross every bridge as we come to them. Please let our future path be free of major bridges. In the meantime we will just try to live our best life with gratitude for the incredible gift of keeping our son that God, science and an enormous amount of love and kindness from all of you have given us. 

Smiles despite a double poke day...

Ollie smiled and laughed for the first time in 21 days today thanks to a very compassionate neurologist who took the time to give him some of his power and control back.

This will be a quick update as I am seriously exhausted tonight. It was another good day. Ollie ate well, but it was challenging given he is fluid restricted right now as the Endocrinologist tries to sort out his sodium levels. 

He had another ECG today as well as a GFR (to test his kidney function), visits from Social Work, Psychology, Neurology, Palliative Care and Oncology. Are you tired yet? Sometimes it exhausts me just thinking about how many meetings we have with doctors each day.

Oncology agreed to give Endocrinology anther day to work out the sodium issues so chemo was delayed to tomorrow. The next lumbar puncture and inter-thecal chemo will now be Saturday. 

Neurology were cautiously optimistic about some minor changes to his vision situation and explained that their best hypothesis is that a bunch of lymphoma cells gathered in and blocked the optic nerves and they are still hoping that it will be reversed when he no longer has lymphoma cells in his cerebral spinal fluid.

Ollie got up and sat in chairs, walked to the bathroom for the first time in 18 days, went for another trip to the gift shop today and was generally happy to play Lego. 

Tonight we had a visit from Maria who as always brought so many generous treats (thanks for the baby shark, Sofia, now we can't get it out of our heads!). 

Later, Ollie asked Mommy to do a scavenger hunt in his room and we used it as an opportunity to orient him and get him more comfortable learning to feel around him.

Unfortunately our night ended on a somewhat more negative note in that his PICC line appears to be clogged, so they had to put in a temporary IV tonight to check his sodium levels and give meds as needed. They'll leave a cleanser in his PICC line overnight that should fix the problem by morning. He took the second poke today like a champ and went right back to sleep.

I am going to do same  now in case he's up at 5 am again! Missing Abby and Mario terribly and hope they are well again soon.

Famished, Focused and Forward

Today was a really good day despite the fact that it started at 5 am again. Maybe it was a good night's sleep thanks to the pillow from home Uncle Vic has brought by the night before. Whatever it was, Ollie was ravenous all morning and I could not feed him enough. Thankfully we had lots of snacks and a well stocked mini-fridge. At 8 am he also begged me to order him some pancakes and bacon. He was a total champ and navigated his food blind, but with persistence and confidence.

He napped a bit mid-morning while I talked to the Endocrinologist about his sodium level, the oncologist about the chemo plans for the rest of the week, and the palliative team about his pain management. 

When he woke he asked me to build a new Lego set. He was patient and listened so well as I did my best to give him detailed instructions and handed him pieces.

For lunch he requested McDonald's, so thanks to Skip the Dishes, his wish was my command.

He promptly chased that with ice cream.

This afternoon he had a headache, so he took some meds and slept while the VAT team came in and did his weekly PICC dressing change. Then he went for an ECG to check that his heart was okay after his heart rate issues in the ICU.

When we got back he asked the nurses if we could go to the gift shop and they said, "Sure, why not?!" So Ollie was thrilled and said we were busting out and were going to loot the gift shop (once I explained what looting actually was he quickly clarified that we'd actually pay!). He was thrilled to find 4 little Lego sets that he didn't have and since a sweet family friend had just sent him $100, we bought them all. 

When we happily went back to 4 North, we went to the playroom where Child Life Specialist, Maryse helped him to make mini pizzas (she even brought in his favourite green olives). They turned out great.

While we had waited for the pizzas to cook, we took the time to get the Candlelighters Courage Beads that Ollie has earned so far this visit. Each different bead has a meaning for procedures, trips to the OR, needles, ICU stay, chemotherapy, scary events and relapsing, etc. In the last 20 days Ollie was owed 44 beads. That is more than the 32 he had before this stay in total. So my big brave 7 year old has had 76 medical procedures or events in the last 3 months. Let the enormity of that sink in for a moment and imagine how any one of us would have reacted to that. 

I found it fitting that both his lovely home daycare provider and one of his kindergarten teachers sent me messages when they heard the news and each in her own way noted his tenacious spirit and determination as strengths they had observed during their time with him that they were certain were given to him to prepare him for this fight.

44 beads of courage for our little warrior so far this stay.

He finished off his dinner of champions tonight with what was left from his Suzy Q donut from Cristina and family. Never was a donut more enjoyed.

I was grateful for a visit from Marie-France tonight since Mario and Abby are sick with a cold and cannot come to the hospital until they are well again. 

Today was a day of I'll tries and I did its. It's a far cry from the I can'ts and I don't know hows of the last two weeks. I am beyond grateful for this day.