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. 

Half Re-birthday

Happy 6 months post stem cell transplant to Ollie!!!

On this day +184 days or 6 months ago from July 20, 2020, Ollie received his sister's lifesaving half match stem cells after an unbelievable battle with Anaplastic Large Cell Lymphoma ALK Positive and two relapses in his central nervous system. 

We can hardly believe that it's already been 6 months. This is another important milestone in the stem cell transplant journey in that if all is well at this point, the re-vaccination process can begin for him. Normally if COVID-19 weren't with us, this would be the point at which Ollie could start to have some interaction with friends and family again. Sadly, that will have to wait until after COVID.

As for Ollie, he is mostly excited to be able to eat deli meats (no Subway for 6 months!), berries (not allowed on low bacteria diet) and to be able medically to get his Buddy Dog from CNIB whenever they have one ready for him.

On Monday we were at CHEO for 5 hours for multiple tests and checkups. 

He had an electrocardiogram and an echocardiogram, a bone density test, and an x-ray of his pelvis and hips. 

In addition to his regular bloodwork, he also had another chimerism test to verify that his sister's stem cells are still 100% functioning in his body. They have been each of the three times he's had this test and his oncologist/post transplant doc confirms that his sister's cells are the overachievers that Abby said they would be. 

He asked Daddy to watch him have his blood tests to show him how brave he is.

He also had an additional blood test to see what (if any but apparently there is a slim chance of having any) antibodies he may still have or have gotten from his sister's cells. This will be used to determine the re-vaccination schedule for him to start as early as next month! Like a newborn baby they'll start with the non-live vaccines and by end of his first year post transplant will finish with the live ones when his new immune system is even stronger. 

Only after he is vaccinated and COVID is gone will he be able to physically go back to school (and I to work).

 He capped off his CHEO visit with a chat with the social worker to follow up on his pre-Christmas request to meet her. I sat outside the room (door open) and listened to music and talked to the doctor while he had some "privacy" to talk about feelings. I am glad that he's seen Abby and I talking to mental health professionals and sees value in it for himself. If only all children were taught about mental health. Only in this way will he be freed in adulthood from the emotional chains that go along with repressed memories and feelings.

Physically he's been well although a bit tired over the past week and Mario did find a little bump at the back of his neck last week. He's having an ultrasound next Monday to ensure it's nothing but as the parent of a cancer survivor, the fear of recurrence never leaves you. I am actually participating in a research study about pediatric fear of recurrence in survivors with the University of Calgary right now and will share more on this as it develops.

The irony is that as the parent you have to assuage their fears and reassure them that it's likely nothing to be concerned about at the same time as your own alarm bells are ringing and you're trying to keep your own anxiety under control.

But we know that there will always be at least little bumps in the road and we can't choose a smoother path, so we just have to fight the instinct to immediately put our armour on and ready for battle. This is hard when history tells us we should never let our guard down.

Last year on this day Mario and I were so stressed because Ollie was inpatient very ill with what we suspected but did not yet know was Anaplastic Large Cell Lymphoma in his brain and spine. 

We also suspected, but didn't know yet that he was having seizures (due to a sodium issue called SIADH) and a CT on this day was inconclusive. Five days later he'd be blind and transferred to the Pediatric Intensive Care Unit (PICU). 

It seems bizarre to me that the same week that marks a year since he relapsed and went blind is the same week that we celebrate 6 months post transplant. Perhaps it's God's way of reminding us to focus on the good and to remember to be grateful despite everything bad that happened. 

A dear friend gave me this stone that she brought back from Florida for me last February after the worst weeks of our lives. She said she had been thinking of us constantly and saw it and knew she needed to give it to me. I have kept this stone on the shelf in the bathroom since then. Some days when going back to the hospital after spending a night with Abby I'd put it in my pocket and carry it as around for a few days until I felt strong again. It would also make me laugh because pre-cancer Ollie was always coming home from daycare with rocks in his pocket, so it was connected to him in more ways than one. Today as I brush my teeth, wash my face, wash my hands, or even clean the bathroom it reminds me that despite the daily fear we live with that Ollie's lymphoma will come back, we need to have hope that it won't and faith that God will carry us all through whatever might lie ahead for Ollie and the rest of us. 

As I tell Ollie when he's worried, we pray daily that it is done and will never come back, but if it does, we know we beat it before and we'll fight as many times as we need to in order to keep him and kick lymphoma out.

For today we'll just put our party hats on and celebrate another milestone reached by our incredible son with the help of our unbelievable daughter's stem cells. 

Hope lockdown is not too hard where you are and trust me, we can all do hard things when we have to.