Final Test of the Success of the "Abby Treatment"

[Photo Description: Ollie lies in the CT scanner with his feet going in first and his arms above his head.]

Yesterday we finally got those elusive scans following an extra month of "scanxiety" after we had to delay first for a cold and then we got bumped last week because 4 CHEO MRI technicians were out sick last week with COVID-19. This made for a very tense month around our house as we waited for illness to pass and for scan day to finally come..

It didn't help that Ollie's cold was in his sinus and caused eye pain, eye goop (diagnosed as viral conjunctivitis) and headaches, when in the past symptoms of his relapses were eye pain and headaches. 

[Photo Description: Ollie readies to have an IV inserted in his arm]

As always Ollie was amazing at getting through his scans day. Handling the IV insertion like a total pro, drinking the yucky contrast for 3 hours and waiting patiently for his turn.

While waiting and drinking he had a great session with his original child psychologist who is back from mat leave and couldn't believe how well-adjusted and amazing he's doing after everything he's been through. "The rumours really are true, Ollie. You're amazing!", she teased him.

[Photo Description: Dawn wears a mask and bears her arm to show a bandaid after getting her flu shot at CHEO]

I snuck off during his session for a short while to get a flu shot while there because I am a CHEO volunteer for the Oncology Patient and Family Advisory Council (PFAC) and the Research Institute. I had tried to encourage Ollie to be with me later as I took my turn being poked for once, but he had little interest. 

[Photo Description: Ollie is dressed in a hospital gown and pants and wearing a mask with a masked Dawn seated beside him defile waiting for his MRI at CHEO.]

We had to wait a bit for the MRI, so he was getting tired by the time they took us and had to lie still for 1.5 hours while they did full head and body scans. By the end he was getting wiggly and uncomfortable, but he hung in there. As usual I sat on the very hard plastic chair and prayed a lot. Naturally for my Ollie' s wellness, but also for other CHEO warriors like Griffin who was starting his chemo for his stem cell transplant at Sick Kids Hospital yesterday, too. 

[Photo Description: Dawn poses for a selfie wearing her mask and standing in front of a creepy clown painting in CHEO's MRI waiting area. Clearly Dawn is not generally a fan of clowns, with CHEO's now retired therapeutic clown Molly Penny being the exception.]

Totally worth the discomfort and seemingly never-ending wait as we got great news today - CLEAR SCANS!!! No evidence of disease after stopping the miracle drug Lorlatinib 93 days ago that has been our insurance policy against relapse for two years. So now we know definitively that the transplant with Abby's amazing overachieving half match stem cells was a real success! I've pretty much been in tears all night once again over the gift she's given him, and the gifts that God has given us.

This was a huge milestone to pass! There were minor things seen in the scans, like evidence of the sinusitis that he's had for the past month and inflammation still in his left eye that he had surgery on 4 months ago, but all exactly what we would expect to see and they said it was otherwise unremarkable. Unremarkable is amazing news in the cancer world! 😆

Monday we're back at CHEO for bloodwork and checkup, plus his final 3 doses of his childhood re-vaccinations after transplant. We're also sending his blood to Germany again to participate in an Anaplastic Large Cell Lymphoma (ALCL) study and to do the Minimal Residual Disease (MRD) test that can detect if there is any evidence of cancer cells left in his body. If this test is negative like last time, we rejoice. If positive we have decided with his medical team to put him back on the Lorlatinib as we won't take the chance of relapse again. Wish us luck, but honestly we're feeling pretty positive and hopeful right now.

So thank you all for your positivity and prayers. God and science are so unbelievably great and we are divinely blessed. If you could, please send some prayers for Griffin and his mama Tamy for a successful transplant. He's been battling off and on the past 4 years of his almost 6 years of life and deserves to get to true wellness, too. 

+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. 

Chimerism and Battles with Central Line #4

Ollie has been a bit more tired the last few days. It made sense to me that his body is working so hard to use those new stem cells that he'd be physically tired. I can remember vividly carrying him when pregnant and feeling so exhausted at times because my body was working so hard to build a beautiful baby boy. I can only imagine that his fatigue felt something like that. 

He is trying solid foods, but it's slow going as he still has some nausea, is fearful of throwing up more and his taste buds are still off from chemo, radiation and all of the drugs he's been taking. We keep encouraging and trying. 

We've tried to get him interested in activities this week, but most of the time he just wants to rest and watch tv. Well, listen really...thank goodness for shows with descriptive video as I never realized how much the pictures tell the story and how much is missed in dialogue alone. As an aside we had to request an original remote to the tv (the hospital uses a clean remote with recessed buttons so easier to sanitize) to be able to turn on the SAP feature with the audio description. These are the little things that that make a big difference to children with special needs that one rarely thinks about until you're dealing with it yourself.

It boggles my mind sometimes that in the span of ten months our kid went from seemingly healthy to critically ill to special needs. Sometimes my head spins when I think about all of the advocacy roles I can and need to play now. Caregiver, cancer parent, parent to a blind child, parent of a stem cell donor AND a recipient. 

I've always been supportive of various youth charities, with Big Brothers Big Sisters Ottawa (BBBSO) being nearest and dearest to our hearts as both Mario and I were Bigs. Now I know I'll need to expand my support to others that have and continue to help us so much with cancer and blindness. 

When I was President of the BBBSO Board the Executive Director and I used to wish that we didn't have to compete with the likes of CHEO for fundraising dollars. Ironic that I am now on this side of it, needing this support. I really need to win the lottery and help them all the way I really want to!

Ollie and I ended up intercepting a call to Abby from her best friend Francesca (I still monitor all of Abby's social media activity for safety) by accident the other day. Ollie was delighted to talk to Franny who kindly and promptly suggested a three way online chat with Abby. He was so happy to be part of the conversation and the girls were lovely in including him and helping him to make silly plans to open a pizzeria with them in future (sorry Gabriel Pizza! Don't mean to compete! 😜). 

It was a fun make believe activity that took his mind off of hospital stuff and reminded me that he's not able to play with friends right now and is missing that interaction. I've offered to connect him with his friends online, but he's been too tired to do it lately. 

We've finally worked out a plan with our friends who are taking Abby when school starts to have her and their daughter do online learning together for the first two months. We're basically bubbling our families together for socialization for the girls so neither is deprived of that while staying safe at home. That keeps their immuno-compromised family (both mom and dad are not working outside of the home) safe and ours, too. It will also make it easier when we come back from Toronto to reintegrate Abby back home with Ollie without fear that she is exposing him to any viruses as we go into the flu season and are still battling COVID. We'll see how things go in school those first months and decide whether we continue this way or have the girls physically go to school in November or later. 

It's a relief to have positive plans to get and keep both of our children well this fall and we are grateful to our dear friends and all who offered expert advice on this front. 

Thursday night I stayed with Abby at the condo as usual. I had a lovely chat with dear friend Charity who called to say how glad she was that things were going well for us. Charity is also our youth minister and I have worked with her on many spiritual endeavors over the last few years. She was one of the first people I told when I suspected Ollie had cancer and we were waiting for biopsy results. Then and now her faith and kindness have bolstered my belief that everything would be okay. 

She asked me at what point do we feel we've really beaten this and get to live without fear. My answer was never and now all at the same time. Never in that I know from other families who have a cancer survivor among them that the fear never really leaves you. It's always possible for your survivor to relapse or get a secondary cancer. When you are told the risks of chemo and radiation, they tell you that the treatment may later cause another cancer. Unbelievable. But you really don't have a choice and learn to accept whatever risks they throw at you, because the treatments are the only way to save the person you love. 

We also NEED to live NOW no matter what else may be thrown at us in future. We tell Ollie that he knows better than anyone that life can be unfair and unpredictable. That there will be suffering in your life that you don't anticipate, so you need to appreciate every moment and do your best to be happy and enjoy life. We also tell him not everyone gets a chance at rebirth the way that he has, so he can't waste it.

So I put on my new "it's going to be okay" mask on Friday morning and went back to the hospital. 

Ollie had a visit from A. Lebut (pronounced A. Leboo, but I have been informed that he is named for a hockey goal in French! 😄) and they played Bop It and other games that they made up for a bit in the afternoon. I was asked by a student nurse to do a family experience interview at the same time, so I was happy to be able to tell her what I feel is important, what Sick Kids does well and what they could do better from the parent perspective.

Friday evening before he left the hospital, one of Ollie's doctors came for a last visit (we'd already seen him twice that day) to share with us the news about his first chimerism test result. 

Chimerism testing is used to monitor the success of stem cell transplantation by evaluating the ratio of donor and recipient DNA in the recipient's blood or bone marrow. He had been tested a few days ago and we were eagerly awaiting the results. The doctor had told me that at this point they would expect a fairly high number maybe as high as 90%. On Thursday night Abby had predicted that her cells would be overachievers. LOL

So the doctor came in, almost vibrating with excitement (he's a Fellow, so it may have been his first time delivering such news). He asked Ollie to guess what his result was out of 100%. Ollie laughed and said, "100%!". The doctor started laughing and said he didn't expect him to guess that and he was actually right!!! Abby's stem cells and DNA have totally taken over his bone marrow already!

Ollie and I were excited and called Daddy and Abby. Abby was so happy at first that she was giddy, and then she cried. Her first tears of joy. Following in her mama's often watery footsteps. Mario was visibly shaken and asked a million questions. He was in disbelief. Then he kept wiping his eyes. I really wish Ollie could have actually seen their reaction and not just heard it.

Fast forward to 3 am Saturday morning. Fever. And worse yet, when they tried to take blood for blood cultures, his PICC line wasn't working. It had been finicky for days. They tried to clean it out with Alteplase (this had worked a few days ago and several times at CHEO). This time it didn't work. At 5 am they told me he'd need to have an x-ray.

They brought their portable x-ray machine to his room and after a short battle we managed to coax him into cooperating.

The line had somehow shifted and was no longer going into his heart, so no blood return. They would have to fix or replace it under general anesthesia. They could still use it as an IV in.the meantime though, so they reconnected his lines at about 7 am and tried to catch up on the several meds he'd missed including his very important anti-rejection drugs, Methylphenidate (MMF) and Tacrolimus.

Because he had the fever, they still needed to get blood, so an IV would be needed. The Vein Access Team (VAT) was called. Ollie was a complete bear given how many times he'd been woken up unpleasantly that morning. He refused to cooperate no matter what we did. The VAT team talked to the doctors and left. A while later the doctors came by and told me there really was no other choice. They wouldn't take him into the operating room to fix the PICC until they ruled out an infection because they didn't want to infect the line and have to take it out (again...as same hastened at CHEO on March and we had to take PICC #2 or due to infection). Once they got blood it would take 2-3 days after to see if the cultures grew any bacteria. 

He still needs his central line for a few months for regular bloodwork and in case he was to have any complications like Graft Versus Host Disease which can still happen after engraftment.

So the VAT team came back. Again no cooperation. They left and promised to come back in an hour. I called Abby and Mario and all three of us worked on him, reminding him that he's succeeding and can't sabotage that when we can see the light at the end of the tunnel. He was not happy, but eventually agreed to do it.

The VAT team came a third time and this time with a little help from Atavan and lots of patience from the two VAT team members, his nurse and I, we got the ultrasounds of his veins and the insertion of the IV in his chosen place done. 

As usual, we progress and still encounter little bumps in the road as we move forward. On a final positive note, this afternoon Ollie's white blood cell count was 8.1 (normal is between 4 and 11), his platelets were way up at 184 (150 to 450 per microlitre is normal) and his neutrophils skyrocketed to 6.7 (yesterday they were 2.26, so way above neutropenic level.of 0.5). So his immune system is functioning like he is a healthy, normal boy. He just happens to have his sister's stem cells and DNA making that happen! We're so grateful that he let her win this battle and that our determined little overachiever' s cells got it done. 

If he does not have infection, starts eating real food this coming week and can take his meds orally again, he can come back to the condo! We're hoping this can happen before Abby leaves to go back to Ottawa. Stay tuned...