Signs, Survival and Winning Battles

Every time we go to CHEO we pass Cancer Survivor's Park. Before cancer (what we refer to as BC these days with no disrespect meant to Christ Our Lord) I always thought this was a strange place for a park given how busy this intersection is.

I never understood that this was a gateway for Cancer families. Both a beginning and an end to their cancer journey in a way. You pass through on your way to the Ottawa Regional Cancer Foundation (located just behind the park), the Head Office of Canadian Blood Services, CHEMO and The Ottawa Hospital with it's Cancer Centre. You can also pass it on your way back. 

The sculpture is by a Mexican sculptor named Victor Salmones and is entitled, "Cancer: There is Hope". The piece features eight life-size figures passing through a maze depicting cancer treatments and success. The most prominent of these is at the front of the park, emerging from the maze with the parents looking determined while relieved and the child looking carefree and happy. 

As we travel further down Alta Vista Drive towards the hospitals, the sign in front of Canadian Blood Services ALWAYS flashes, "Stem Cells for Life" at me as I pass. 

Until Ollie had cancer I missed a lot of signs. Like he says, now I can see the light while he lives in the darkness. Now I try to read the signs for both of us.

So all signs have pointed to him being better and I desperately wanted to see those signs, but worried I was misinterpreting them or reading too much into them.

Turns out I wasn't! 

REMISSION!!! WOOHOO!!! GOD IS GREAT (and so is science!)!!!

 

The lumbar puncture showed no lymphoma cells in his cerebrospinal fluid. The MRI shows that the lymphoma lesions that were on the lining of his brain are gone and there is no evidence of cancer anywhere. While his optic nerve still looks inflamed,  they believe it is due to it continuing to heal and said it looks better than when we last went to Toronto in remission. In our Ottawa oncology team's opinion the Lorlatinib and radiation worked and he is in remission! They've sent our results to Sick Kids Hospital in Toronto to get their opinion on next steps but are recommending stem cell transplant as soon as possible. 

We should hear about next steps in the next few days. Assuming Sick Kids agrees, we will likely be headed there for stem cell transplant in the next couple of weeks. Second time WILL be the charm for us and he'll finally get Abby's selfless stem cells and her strong immune system with them.

So there was happiness here tonight, although we're cautious because we've been here before on the brink of a potential cure, only to have it ripped away from us at the last minute. Abby and Mario really want to downplay things until he is fully cured. 

Ollie and I have spent the most time in hospital, in the physical and emotional reality of this disease day in and day out. We're going every battle together and forced each other to keep going no matter what. That's not to say that Abby and Mario haven't felt all of this deeply, but I sat in ICU for a week with my son when he was seriously on the precipice of death (while Mario and Abby were ill with the flu and couldn't come to the hospital), begging God to save him. I know too well how lucky we are to have made it back from there and to have this second opportunity at getting him the transplant. The foremost expert in his disease in Canada honestly thought this was a long shot. 

So we'll celebrate this victory (our Ottawa team says it is a BIG victory and how amazing Ollie is to have gotten here) even if only by being silly together tonight, playing games and watching Ollie gleefully (blindly) driving his remote control car around the house. 

The Lorlatinib is proving to be a miracle drug for us and another family we have connected with in the UK whose daughter is on it too and got her transplant almost 4 months ago. Remember that last time he had only been in remission for about 5 weeks when he relapsed. It's also the extra insurance that we may need to keep him in remission this time until we can get the transplant. 

Thanks to all of you for nurturing us through all of this. We haven't won the whole war yet, but this was an important hill to capture. This hard fought battle has turned things in our favour.  Thanks be to God and all of you for helping us to get here!

We'll keep you posted as we know next steps. Please continue to keep us in your thoughts and prayers. While this is all honestly miraculous in many ways, and I hate to be greedy, the real miracle we need is a successful transplant. Let's hope Sick Kids agrees.

Anticipation vs. Anxiety

Today's the day. The day of Ollie's MRI and lumbar puncture to determine if the Lorlatinib drug and radiation are working. I am, as Abby would say, "excervous". Excited that the day has finally come and our agonizing wait is nearly over, and nervous about what they will find. 

In all fairness, I shouldn't feel too nervous as I am certain that the new treatments are working. Oliver is happier, healthier and more active than he has been since he became very ill and was in the ICU in January. His attitude is better, his sense of humor is on fire these days and he's determined to do things he used to. 

Over the past week he's gotten physically stronger and insisted on walking more and even going up and down the stairs by himself (with a paranoid parent nearby to catch his fall if needed!). He hasn't climbed the stairs on his own since January. 

He's embraced the Braille learning and is now teaching Abby and Mario. He learned the first five letters of the alphabet in Braille in about 15 minutes last week during his virtual lesson with Leona from the Canadian National Institute for the Blind (CNIB). She laughed and said we'll learn as many more as he, wants to next week, but told me after that he'll have them all down within a couple of weeks with his quick brain. 

This is an enormous relief considering they tell you that radiation can cause learning disabilities, but all we've seen so far is that his intelligence and quick wit have returned! He's even doing significant math in his head and learning multiplication! 

We struggle sometimes to find a balance between letting him do normal, physical things and getting him to lie down and rest. His ankles get swollen and his lower back starts to hurt if he sits up or stands too much. They're also looking at his spine today in the MRI to see if he has a compression or fracture, which is apparently very common in kids who have had chemo.

He's still annoyed that he has to cover his PICC line to swim, but there have been several days where he's gotten past this and happily floated around our giant kiddie pool.

Last week he also surprised us by insisting he could play like a normal kid in the pool on his own and did this...

 This may not seem like much, but for a cancerous blind kid whose balance and fear have prohibited him from even bending down to pick something up off of the floor, this is unparalleled. He then stood up confidently and stably and was so proud of himself. So were we.

Even little things like feeding himself soup are getting easier.

He got an exciting present of a favourite treat from sweet friend Sharon who has repeatedly sent lovely and unexpected treats to my kids over the past 8 months.

He also participated in a grade 2 scavenger hunt and his thoughtful teacher, Mrs. D sent me the list of items ahead of time so Abby and I could gather them and Ollie could just search in a basket to make it physically easier for him. Fenton family note that he used his Octopus that you sent! Thank you!

Abby's Virtual Graduation was last Friday. It was bittersweet. Picking up her grad kit and not being able to hug the amazing educators who have supported our family like never before this year felt awful. Abby was upset all morning. Add to this a call about a family member who was injured and had to go to hospital and the stress was palpable here.

When the time rolled around to watch the virtual presentation, Ollie wanted to watch, so I narrated what was happening for him. Naturally Mr. Inquisitive asked a million questions. Abby got upset at him and uncharacteristically lashed out at him saying this day was the only one about her and she needed quiet. He got mad and cried saying he didn't ask for cancer and couldn't help that he was blind and wished he could just be normal. By this time all three of us were crying. Some days no matter how much we want to be positive right now we just get caught between cancer and COVID. 

When we all calmed down we hugged it out and then sat down to watch the rest. It was as lovely as could be under the circumstances.

Abby was awarded the Kiwanis Club Award, which is generally given to recognize positive attitude, dedication and commitment to one's community. She also got a medal for Character. Both very fitting for our girl, especially this year given all she's done to donate stem cells for her brother.

While we've waited for today to arrive, we've had some fun. We had our own CHEO Teddy Bear Picnic last weekend since they couldn't hold their annual event.

Ollie begged us for the game Pie Face and we stupidly agreed to buy it. 

It was actually worth it for the laughs, though. 

Again and again Ollie got pied, but loved it.

We parents...not so much.

The MRI and Lumbar puncture (to check if there are still lymphoma cells in his cerebrospinal fluid) went well today. Now more waiting on results. Might take a few days and we'll share when we can. So being the Momcologist that I am now, I am confident that we will hear good news and either be in remission and on our way back to Toronto in the next few weeks to finally get Abby's lifesaving stem cells, OR see a significant reduction in the number of cells and lesions and stay the course on the Lorlatinib for a bit longer to get there. Honestly he's been SO well that it is impossible that he isn't kicking lymphoma's butt right now. 

So please send those positive wishes and prayers our way asking for the news we deserve. This kid has fought so hard to be a contender and it's his turn to win. Love to you all and thanks for your patience as we wait for news and next steps!

New directions

The last few days have been "brutiful". On the one hand we had the excitement and beauty of the kindness from the Gabriel Pizza launch of their Ollie's Pizza with proceeds going to Candlelighters. 

On the other hand we've been living the silent brutal agony of waiting for results of his tests. We knew early in the week his MRI showed that his optic nerves had calmed down, but we also knew that there were unexplained spots on his leptomeninges (lining of his brain). Wednesday's optomology exam confirmed that the optic nerve had calmed down, but there were also some abnormalities they wanted to check on again next week. 

Thursday's lumbar puncture was the defining test. It seemed to go okay and Ollie was a trooper as usual. 

We got home feeling pretty happy just to be together.

Ollie had McDonald's as a treat for being so brave (as always). Thankfully he didn't choke on the fries he couldn't shove in fast enough!

The doctor called us late Thursday afternoon. Abby sat with Ollie and played word games with him while Mario and I were in the next room taking the call. 

The new drug Ceretinib is not working. He has a lot of lymphoma cells in his cerebrospinal fluid again. 

We sat on the phone hearing how this reduced the likelihood of his survival yet again and how few tools we have now to work with. We were told (Mario for the first time directly by the doctor and me for the second) that while she knew we'd been clear that we'd try anything to save him, she had to be honest and tell us that some of the options they'd look at as a team now might make him very ill and he could still die a very painful death or some might cause unexpected sudden death. I shook my head silently and cried. Wow! What a choice! Mario in his usual blunt way said let's do the next right thing and we'll cross those bridges later, but if he's going to possibly die anyways we're going to go down fighting. We agreed we wouldn't give up. 

So on that brutal note we agreed to reconvene with the whole team (Sick Kids oncology, radiation, bone marrow transplant, and CHEO) Friday to decide on next steps and they'd have a plan. I spent the rest of Thursday researching options and talking to folks on forums online about what we might try. I sent some possibilities to the oncologist to see if they'd been considered. 

We had decided not to tell the kids until we had a plan. Being in the condo together and unable to cry or rage was hard. All we wanted to do was be with him, yet each time we snuggled him or rubbed his little fuzzy head (his hair is growing back) tears appeared and we had to hold them back. I couldn't even really call to talk to anyone about it because I didn't want them to hear and sometimes even though you have the best people in your life who love you and would bear anything for you, you just don't want them to have to share this pain. By evening I felt like I'd snap in two, so I went out to try to find him yoghurt tubes (I struck out and felt a big failure at that, too).

On my walk from one store to another, I just tried to breath. I prayed. I bargained with and begged God to save him. To let me keep my desperately wanted rainbow baby who had been such a joy since he was born. I got to the park across the street from our condo and as I walked through and saw the empty and caution-taped playground I bawled. It seemed a symbol of the pain of loving our children so much. My dearest friend told me, "Love is pain". So brutifully true.

In true Toronto downtown fashion, a woman sobbing loudly in public went unnoticed or at least unacknowledged. So I reigned myself in, wiped my tears, blew my nose, threw out my tissues and mask, hand sanitized, put a new mask on and kept on going to look for yoghurt tubes for my son. I did feel better at least.

I slept with Ollie part of last night to give Mario a break. It's hard...you want to be near him and yet you hardly sleep because every sound or movement, every breath could mean something bad. I did sleep subs and about 4 am Mario wandered in needing to be near him so I went to be with Abby. A friend asked me isn't it hard to be intimate with a sick kid? Yes, but there's also a different intimacy, like an invisible rope that is tying us together. Like we're in the same kinder class and holding onto the rope together so we don't get lost and can stay safe. Maybe God is towing us.

 

Friday we just loved and hugged our children. They knew something was up but said nothing. Abby had a meltdown about homework and I told her it doesn't matter. Promised I'd message her lovely teachers who have put zero pressure on her this year and simply loved and supported her through the year. 

That afternoon we had a video conveyed with the entire team. It was particularly comforting to have our CHEO team there, too. They've been with us all this time. 

The new plan is a third generation ALK inhibitor caked Lorlatinib. CHEO had already looked into it before we left Ottaea and asked the pharmaceutical company for it to be released on compassionate grounds. You can't even buy it yet. It was approved for us and will be shipped. We decided to have it shipped to Ottawa as Ollie wants to come home and since we're looking at an unknown timeline now, we'd rather be home and at CHEO. We think being home will improve his depression and being at CHEO where he knows everything because he's physically seen it before blindness will bring back some confidence and get him moving again. 

There will also be 13 sessions of radiation. Sick Kids said he can do them at either hospital, so again it made more sense to us to do them in Ottawa. WHEN this works (not IF) we can come back to Toronto for the stem cell transplant. Abby's beautiful stem cells are stored safely here and I have to believe that God would not make her go through that if we won't get to use them. The team assured us that transplant is not off the table, we just need to beat back those cells in his beautiful brain. 

So we told the kids we need to try a better drug and some radiation. And told them we're heading home Sunday. Abby was sad because as much as she misses home, she like me, wants him to get her stem cells and be on.the road to recovery now. Ollie was mad that we're not leaving sooner!

He proudly donned his new Gabriel Pizza gear late in the day after we read all about our friends trying his new pizza. Some superheroes wear Gabriel Pizza attire. 

Toronto, it's been my least favourite visit ever, but we'll be back  so you can redeem yourself again after COVID-19. We are grateful to our friends in Toronto who have reached out and helped when they could despite this crazy time. We'll be home soon, Ottawa!

Sick Kids VS COVID-19

Tuesday afternoon Ollie had a low grade fever. He's had a stuffy nose, but no other symptoms until the fever. So we contacted Bina, Dr. Alexander's nurse and explained the situation and were asked to come in to Emergency. 

This immediately made us nervous as we knew that as of last weekend, Sick Kids had discovered two kids with COVID in the hospital and 1 nurse. As of Tuesday morning we had learned that one of them had been on a Hematology/Oncology unit. The Bone Marrow Transplant Unit (8B) to be specific. This is on the same floor as the oncology ward (8A) that he has been admitted to before and the Day Hospital (8D) that he has his lumbar punctures in and would be back to this Thursday.

So off we went to emerge with this additional stress hanging over us. On a positive note, at least Ollie's neutrophils are higher (12!) than they've been in 5 months. 

Thankfully this overall visit was a better experience than our first time in emerge. The nurses were kind and efficient. They had a little trouble getting blood out of Ollie' s central line at first so they called in an expert nurse who had the magic touch and made it work. 

They also had to do another COVID swab (Ollie' s third since arriving at Sick Kids and happy to report all three have been negative) and he had a poke for blood cultures due to the fever. He cried a little at each of these, but submitted to them grudgingly.

They started him on fluids and we waited. Eventually we saw the ER doctor who was super sweet and kind to Ollie. She took time to check everything to ensure he didn't have any rash, cuts, bruises or any other possible sources of infection on his body. She then told us we needed a new chest x-ray and after that she'd call oncology and the oncologist on call would be with us when available.

Emergency was much busier than the last time we were there, but still calm. This time though, everyone was using PPE including gowns, masks, surgical caps (with buttons sewn on to relieve their ears from the masks), goggles and gloves. They were super careful to change gowns and gloves each time they came and went. 

X-ray went better this time as we used the one near emergency which was more modern and roomier than the weird room upstairs they sent us to last time. They said they only use that old one when they're really busy or backed up. Ollie was also much better behaved for this one and there were two super nice technicians. Again full PPE used and they were wiping down the equipment including my lead vest as we were leaving. With all the x-rays and CTs we've had, I've never seen them wipe down the parent vest before hanging it back on the wall.

After 6 hours there, with perfect bloodwork, no obvious source of infection and a good chest x-ray, I talked to the oncologist on call about my concern about Ollie being admitted with a known exposure to COVID nearby. I assured her that we were living literally across the street from the hospital and could run him over in his wheelchair quicker than an ambulance could even get to us. She was terrific and so patient with Ollie who was very stressed. Since he was clinically well otherwise, she knew it was best to minimize all exposure for oncology kids, and he had appointments at the hospital Wednesday and Thursday, she decided we should give him a high dose of antibiotics that would be good for 24 hours and have him checked out the next day.

At this point I was thrilled, but Ollie was upset. He didn't want to leave the hospital. The doctor agreed to give us a few minutes as she went to order the antibiotics. We had a long chat about how Ollie feels safer sometimes being in the hospital where he knows nurses and doctors are right there to help if anything goes wrong. Boy did I understand that feeling. This is the crazy thing about a critical illness. On the one hand you never want to have to go to the hospital, but on the other when you've been through so much already where you needed constant medical attention to stay alive, you still feel safer in a place you never wanted to be on the first place. Just one of the cruel ironies of this disease. 

Maybe it is the same feeling that you have after being in prison a long time and getting out? Like you aren't sure you can make it on the outside? The supposed reason that so many re-offend and soon after their release. Or maybe I've just watched too many episodes of Orange is the New Black. 

One thing is for sure, when we're really free of cancer I don't ever wish to be back in a hospital feeling like this again. I can't imagine being those poor families who get back to normal life and then relapse and have to do it all over again. We are sincerely hoping and praying that all of our relapses have happened so close together in a short time to spare us that later.

So I called up the troops because "We fight as one" and put Abby and Mario on speaker phone. They'd been at the condo praying all day that Ollie didn't have to be admitted. We all talked to Ollie and managed to convince him that we were all keeping him safe. That Abby had discovered his bump in the first place and had gone through the pain to donate the stem cells that will eventually save his life, that Mommy had actually diagnosed his specific kind of cancer a week before the doctors did (and she once diagnosed his Scarlet Fever before he saw a doctor - who did not believe her before the positive test confirmed it in his office!) and was the one who recognized he was having seizures in the ICU on January and Daddy who insisted on better pain management for him when they thought he had meningitis and because of that we were transferred to the ICU where they finally figured out it was actually lymphoma in his brain. We reminded him that he was at emerge at that very moment because we were lovingly taking care of him and wouldn't take chances with our most beloved boy. 

So we agreed that Mom and Dad (one of whom always sleeps with him now anyways) would check him every hour just like the nurses and we would come right back if he told us he needed to or we thought he did.

So Abby and Daddy walked over to the hospital at 9:15 pm to walk us "home". 

We fed our ravenous boy and got him to bed. I am still uncertain if we can even order food to the ER as no one has ever suggested it to us even though we have been in the ER for 8 and 6 hours respectively now. Thankfully we always know to have many snacks, juice and water in our bag. Honestly Ollie won't eat the hospital food there anyways and they stop delivering dinner at 6:15. 

Our boy was feeling better today and even managed a couple of little grins while being a bit of his old sarcastic self. He had his optomology exam today and Mario took him. He was very stressed because he can't see as they want to pome around near his eyes. Imagine someone coming at you when you can't see it. The anxiety of anticipation is all too much sometimes. 

The good news is the MRI Sunday and optomology exam and photos today showed that the optic nerve is less inflamed than it was three weeks ago when he relapsed. Optomology wants to see him again Monday to see if it continues to improve. Either way, this is an indication that the Ceretinib is working. The moor puzzling news is that the MRI also showed that there are a few little spots of something appearing on his leptomeninges (covers the brain) which may be nothing, but given they didn't appear on previous MRIs is concerning. The doctor did say it would be unusual to see it working in the brain and causing his optic nerve to calm down and also see new spots as generally if it's working, it's working everywhere. 

Tonight he spiked another minor fever after being fine all day. The oncologist on call felt given it was low grade again, we should stay home unless a new symptom occurred or the fever wouldn't go down or got worse, even with Tylenol. She consulted Dr. Alexander about his LP tomorrow and they still want to try if he isn't feverish. So tomorrow if he's okay in the morning we go and if he's still feverish we may still have to go, but potentially to be admitted and wouldn't have the LP. The LP should definitively tell us if the cancer cells are less or more and therefore whether the new drug is working or not. 

So I don't know what the fever is trying to tell us, but I feel like maybe the COVID case on the very ward where we were supposed to be, after having killed his immune system to allow his sister's stem cells to graft is the reason we're not there. It likely sounds crazy to be grateful for a relapse in his brain that saved him from COVID, but I can't imagine why else we are here instead of there right now. I try not to read into absurd things, but nor do I want to be that silly guy in the meme who keeps refusing to accept help because he's waiting for God to save him, never realizing God sent him multiple people to help save him along the way. 

On a positive note, the other CHEO family that is there in the Bone Marrow Transplant Unit confirmed that they were all tested and are negative and that their little O has grafted, so he's doing okay. Great and relieving news.

So send us your prayers, positivity, karma, light, vibes, whatever you got tomorrow for good news. Both on the fever front and the kicking lymphoma out front. Neither COVID nor lymphoma are taking my boy!

Transplant detours

It's been a pretty quiet week. We've spent it going for walks, nearby drives when requested by Ollie (a drive through Daddy's childhood in Toronto), playing with new toys (thanks to those who have sent gift cards to order things to keep the kids amused!) and working on school stuff. 

We've had a few laughs and some little arguments. The kids are feeling "cooped up" in Ollie's words and sad that we're not in our own home and neighborhood. Ollie's mood is mainly due to the steroids (Dexamethasone) that he's on to reduce the inflammation in his brain. They make him moody, aggressive, angry and sometimes sad. Thankfully this is just short term. 

Abby is missing friends, finding online learning a bit isolating and overall feeling overwhelmed at Ollie' s challenges. 

The waiting is hard on everyone. Today we got some good news, though. Ollie had bloodwork and a check in with his oncologist. He was so grumpy and mad that after a brief chat with him, Mario came to get him and I stayed to talk to Dr. Alexander and Sonia the social worker about next steps. His bloodwork from earlier this week is perfect. The doctors feel that the new meds are working and we can start reducing the steroids. They want to do a CT, MRI, and Optomology scans at the end of the month (in about 2 weeks). They'll also do another lumbar puncture to check the cell count. 

Once they review the results, the oncology (CHEO and Sick Kids), radiation, bone marrow transplant and optomology, teams will confer and decide if they think we can proceed to bone marrow transplant. At this point they all still think this makes sense if the meds work and kill the lymphoma cells. If they see progress, but there is still evidence of lymphoma present, we may need to continue with the Ceritinib ALK Inhibitors for another month or so. In the rare data that does exist for kids using Ceritinib, most kids responded well within 2 months. There are also kids who have been on Ceritinib and stayed well for over a year, but I am not a proponent of giving him a drug for a long time where there is no evidence of the long term effects. 

Plus we're looking for a real cure, not an ongoing treatment. While there are no guarantees that it will cure him for good/that he won't relapse, stem cell transplant is the most likely path to a cure and long term quality of life. He may still need to be on Ceritinib and/or other meds for a year or so after transplant as insurance against relapse, which we are totally okay with. 

So we'll stay in Toronto until his next tests are done and a decision is made about bone marrow transplant. If it will be months more before transplant, then we'll likely go home to Ottawa to wait. If we only need another month on the drugs to get there, we'll stay in Toronto. I believe that we were meant to be here to get the transplant. I don't understand why we have to weather another roadblock on that path, but we'll take the short detour and get back on our path. 

In the meantime we are making good use of our time together and reconnecting at least virtually with old friends in the area. We are grateful to Awi and Tanya for dropping dinner by a couple of times and even though we had to maintain a social distance and couldn't hug, it felt like yesterday since I had seen Tanya. 

My dear friend Christina lives here in the GTA and I am glad to have connected with her even if we can't see each other. She and I used to travel a lot together and she always joked that all roads lead left, but at the moment I believe that all roads lead to transplant.

I love that reconnecting with old friends here feels like no time has passed despite everything. We've been lucky to have such lasting and true friendships and their support is so helpful right now.

Abby and I also did interviews with Canadian Blood Services yesterday for an online story they're doing on Abby and Ollie, sharing her stem cell donation and his fight. All in the interest of encouraging young people to consider getting swabbed as Canada intends to focus on national donors as it rides out COVID-19. Naturally the writer was impressed by how mature and well-spoken Abby is for a soon to be 12-year old. I sat in for her interview and was again overwhelmed by what she did for her brother. I was also struck by how like me she is in her responses and speech patterns. I had answered some of the same questions earlier in almost the exact same way. Whether her answers were the result of her actually listening to the many lessons I've tried to impart to her or her value system being so like mine that she thinks the same way, I was struck by how much responsibility and influence we have as parents to build amazing little humans who will change the world. 

I'm thankful that she also has incredible influences in her friends and supporters. They make her a better, more empathetic person.

Abby participating in her Friday night youth group virtually.

I am so grateful for my two amazing little humans and that God chose me to be their mama. Even when it's hard, it's still a blessing. 

So we'll weather the emotional ups and downs while waiting for more good news and a clearer road map for the next steps and keep you posted. Thanks for your love and support. We wish you well.

Ollie vs. Lymphoma - Act III

It's back. A relapse of lymphoma in his cerebrospinal fluid. It's only been a couple of weeks off of the full chemo and it's already back. Only 18 cells, but persistent little jerks who have been agitating his optic nerves and causing those terrible headaches again. 

So the stem cell transplant is off of the table unless we can get rid of these again soon and clearly the lumbar punctures with intrathecal chemo were not enough to put his cancer into remission long enough for us to get the transplant. 

They've also basically told us there's little hope of him seeing much again because they can now see that the optic nerve was deprived of oxygen in various areas and that it's been too long and is not recoverable. We both feel that this is so secondary to the bigger issue. We've always said we can help him have a full life even if he's blind after all of this. 

It feels like every time we let ourselves hope that we're going to win and can see the end zone, the ball gets fumbled and we lose the control/possession of it. We're so close, yet so far away from finishing.

After MRIs, X-rays, an EKG, a lumbar puncture and neurology exams today, the doctors definitively know what we need to try next. Try because now there really is no roadmap to curing his cancer because the very rare type he had is now even rarer because of this second relapse. And statistically the odds of beating this are now smaller. And for a few moments today I felt that small frightening place. And then I got out of it and reminded myself that myself and my family have beaten many statistics already. 

For example,with a history of addiction in my family, I was more likely to be an addict, but am not. Since no one in my family had ever gone to university, I was very unlikely to get in and go, but I did. Mario was in a terrible car accident with his family as a small child and his parents and older sister passed away as a result, but he survived and had over a dozen skin grafts over the years. They weren't even sure if he'd walk again, but he did. 

We are a family of fighters and statistics beaters, so that's what we'll keep doing.

Thankfully when Dr. Alexander came in to talk to us about next steps I happened to have Sonia the social worker there, so I was grateful for the support. Mario was on speaker phone since with COVID-19 we can only had one parent with Ollie at a time right now. Sonia also said we can get special permission to have all of us at the hospital when needed, even Abby, especially since she's his stem cell donor whether or not it goes ahead. She said it should be possible to get everyone there for Easter of Ollie is still admitted. He was admitted last night and remains in hospital for observation and better pain management for at least the next few days.

So the next steps are new cancer meds and a high dose steroid to reduce the short term inflammation in his brain. Ollie began taking a new generation ALK-Inhibitor called Ceritinib tonight. If he can take them and they work to get rid of his active lymphoma again, we have a chance at radiation and stem cell transplant.

Honestly getting him.to take this drug  seemed like a huge obstacle. Partly because he hates taking oral medicines and has had a lot of difficulty getting them down. Plus, because these are adult meds that have had clinical trials for children, they're still really geared to the adult world, so they're huge and he has to take 3 of them!

Side note: I am so grateful for the health insurance that Mario and I have through our employers as the new med which is $6,000 for a months supply is fully paid for.

Trying to convince him that he needed to take these meds was difficult this evening. I called Daddy and Abby and the three of us tried to explain to him why it was so very important for him to take them. He kept saying, "I can't. I can't!" And so we asked him if he wanted to stay with us or not. What a conversation to have to have with a 7 year old. We've tried to be honest with him in an age appropriate way from the beginning because it is his body and we don't want to have whispered conversations around him. 

It was so sad. We all tried to convince him of why he needed to take the meds for all of us to keep us together. Abby started a monologue about everything he needed to be there for like family vacations, Christmases, graduations, her wedding and his, for their children to grow up together and to celebrate their 100th birthdays together. It was sweet and silly and so honestly raw that it broke my heart.

So we got off the phone and got the nurse to give him some nausea meds, he ate a croissant and then I started trying to encourage him to take them. It took a while, but he finally agreed to try it with yoghurt. I chanted over and over, "You can do it. You can do it." And told him how brave and strong he is and has been through everything and this is nothing compared to all of that! He took the first one and swallowed it down no problem!!! I think I was more excited than I was at his birth. He then threw back the second and third without complaint and was so pleased he asked to call Daddy and Abby. When we did he explained that he had done it and then Mario, Abby and I all cried and praised him so much. He then asked if Daddy could come to the hospital to spend the night and bring Beyblades. LOL

Abby told me later that after their earlier conversation with Ollie where we tried to convince him he had to take the medicine, she and Mario had prayed to God, Jesus, Mary and everyone they knew in heaven including Mario's parents to plead intercede and help Ollie to take the meds. Before all of this, my husband did not practice his faith. Now he practices it daily and we each pray with the kids often multiple times a day.

After we switched and I was back at the condo with Abby, Ollie called me to tell me that he did want to stay with all of us and he would do it every night he had to and Dad could help him the next time. 

So tonight despite everything we are feeling like we're going to get through this. If Ollie can do the hard things and is willing to fight, so are we. Frankly Mario and I had already agreed we wouldn't give up even if Ollie tried to. This family of fighters is ready to banish lymphoma once and for all. As Ollie says, we'll kick it in the teeth.

Please keep the prayers and positivity coming. We are feeling it. Your messages, likes, and check ins are all so appreciated. Grateful also for the St. George School staff online prayer circle and the Alpha online rosary session that many of you joined tonight. We are feeling the love of our family, friends and community today even if we are physically far from all of you.