I've been debating whether or not to share this. I don't want to unnecessarily cause anyone any stress or in any way be "the boy who cried wolf". In the end I decided that (as a dear and smart friend pointed out to me yesterday), it's not my job to protect everyone and some close to us might be hurt or mad that we didn't share what's happening. I also know that we're trying to give an accurate and real picture of what life in pediatric cancer really looks like and this is so common in this world, that I must include it.
About 2 weeks ago and two weeks after COVID invaded us, Ollie had three little bumps show up in his right armpit area. I knew this because Mario or I generally help to ensure he gets into the shower regularly and I showered him that day. It is an opportunity for us to also keep an eye on what is happening to his body and look for any strange bumps.
I asked Mario about it and he said they'd been there a few days. As always I was more stressed in the moment than Mario was, but he reminded me that this happens and would likely go away as usual. So I took deep breaths and tried not to worry much about this as Ollie has had rash-like lesions or bumps appear off and on since his stem cell transplant in July 2020. Usually they stay for a few days then leave as quietly as they came. Generally his transplant team has suspected it's just a bit of Graft Versus Host Disease (GVHD). The traditional school of thought is that a little GVHD is a good thing. This happens when the donor's cells (Abby's in this case) attack the recipient's healthy cells, but this also means they are attacking any leftover cancer cells in the recipient (Ollie), too. It can appear as rashes or lesions.
A lesion is a slightly raised spot that can look somewhat like a rash, like acne before whitehead appears or mosquito bites. Ollie originally had three lesions before diagnosis. The bump on his neck that grew and two tiny ones on his belly that never grew. Initially doctors did not think his belly bumps were related, even though I pointed out that they appeared about the same time as the neck bump. After his biopsy and Anaplastic Large Cell Lymphoma (ALCL) ALK+ diagnosis, I reminded them of the belly bumps and requested a biopsy of those. Dermatology did it under sedation when he was having another procedure in the OR and sure enough, those were ALCL, too.
So finding rashes and legions is not abnormal for us, but I have learned better not to freak out each time it happens. So I kind of put it out of my mind and in the craziness of the past few weeks (one of Ollie' s teaching team had COVID from a family member, so his schedule was a bit less routine with him home a bit more and I am gradually returning to work and trying to wrap up a bunch of volunteer commitments) I actually forgot about it! Fast forward to this week on Tuesday evening when I was helping Ollie get ready for bed (generally Mario takes care of helping him dress as he is getting older and more comfortable with Dad). Taking off his shirt I saw that the three lesions were STILL there!
Now Mario (like a regular dad) tends to brush off little stuff and tell the kids to shake it off or ignore it, so honestly he didn't think anything of the bumps. Frankly he has no idea what day it is or of the passage of time, so when I asked why he didn't flag that they were still there, he honestly didn't think it had been more than a few days. He still didn't think it was anything to be concerned about, but I reminded him that we don't have the luxury of just hoping it's nothing because of his history. I put Ollie to bed reassuring him that it likely was minor and he shouldn't worry because that was mine and dad's job to worry about him and we'd always do everything we needed to in order to keep him well.
It had been two weeks. My PTSD started to kick in, but I breathed deep and tried to analyze the situation logically as I always have to make medical decisions for him. When looking at the situation I began to add up the following:
- We'd reduced his dose of Lorlatinib from 100 mg to 75 mg 5 weeks before. The intent was to decrease side effects such as his weight gain and anxiety. He'd seemed to respond well.
- His appetite had significantly reduced and weight had gone done a bit since then, too. But lots of appetite and losing weight can also be signs of cancer.
- He had 3 persistent lesions there and two others on his back under his armpit. They did not go away with hydrocortisone like previous spots did. The original belly spots didn't respond to anything either.
- Mario had stayed in the Clubhouse with him last weekend for a sleepover on the sofa bed and commented on how incredibly sweaty he'd been both nights. This is not uncommon for Ollie, but night sweats can be a sign of cancer.
- Ollie had been more tired lately having a hard time getting up in the morning and in some days falling asleep in the car on the way home from school. Fatigue can be a symptom of cancer.
- When looking at the side effects of having COVID, every one of these symptoms could also happen in an immuno-compromised person in the months after having COVID, especially in the first month.
It was already late so I reached out to my cancer mama sisterhood for advice and understanding. When you have an incredible network of cancer mamas around the world someone is always awake and there for you. Sam in Australia (whose son Noah we joke is Ollie's ALCL diagnosis twin as they were both diagnosed in November 2019 at age 7) was up and immediately responded. We chatted online about the situation and whether I was being paranoid, how I felt and options. As always we made each other feel better about the fear and after effects that we live with daily. It is so strange and yet so beautiful when someone you have never physically met loves you enough as a fellow human being who is hurting to put aside their own worries and wades into yours, knowing full well they may be triggered by it. I cannot express enough how important it is to have people who have lived what you have on your side. I am fortunate to have so many amazing friends and family who support us and I am grateful for every one, but no one understands you and how you feel like someone who has walked miles in your shoes. I am grateful always for Sam and also to mamas Christine, Julia, Lisa and Kelly who live this daily and helped me handle the myriad of emotions over the past few days.
So now I was certain we needed to tell his team whether I was being paranoid or not. I'd rather be paranoid and wrong (please let me be wrong) than too late. And if it is COVID or an exposure to some other childhood illness, his team needed to know.
I messaged his post bone marrow transplant (BMT) clinic nurse Julie and explained the situation, including pics. I told her I knew it was not urgent, but it was important that we check this out and that I was flagging it for Dr. Abbott for her to look at during our regular checkup and blood work next Monday. Julie is amazing and called me at 7:40 am the next day, telling me she'd shared with the doctor and would let me know if any additional tests would be needed. So I went about my day, confident that his team would know what to do. Julie called me back a bit later and said Dr. Abbott was asking for a dermatology consult to look at him and they'd try to line it up for our Monday visit.
Less than 30 minutes later I got a call from the receptionist at the Medical Day Unit (MDU) cancer clinic at CHEO saying Ollie needed to be there the next morning at 8 am. Shocked I said, "For WHAT?!". The new receptionist apologized and said it was for a dermatology consult, that they'd put an Emla (skin numbing cream) patch on and a half hour later they'd did a biopsy of his bump under local anesthetic. I thanked him and got off the phone with the overwhelming feelings of gratitude that they were acting so fast and fear for the same reason. This is not new. I felt similar in the weeks after his original biopsy as we waited for specific diagnosis and they prepped with additional scans and tests while we waited.
When Ollie got home I explained that just to be on the safe side the doctor wanted to do a small skin biopsy to be sure this wasn't his cancer coming back. He asked a lot of questions about the biopsy. Would he be sedated again? Would it hurt? What if the Emla doesn't work? Are we sure they're going to do a biopsy or is it just maybe? How would they do it? Could he choose a punch biopsy vs. a scalpel/razor biopsy? Questions that no 9-year old should ever have to know to ask and just break your heart when you think about everything he's been through to even understand what he felt he needed to know this time.
[Photo description: A skin punch biopsy tool like the one used at CHEO. It has a green rubber handle and a hollow metal tip with a sharp edge.]
A skin punch biopsy is done under local anesthetic (think going to the dentist and having freezing put in for a filling) and uses a punch (at CHEO they called it a cookie cutter) to make a small whole and take the skin out as a sample (think Dr. Pimple Popper).
So I let his school team know what was happening and that he wouldn't be in the next morning and maybe not at all depending on how he felt after. I explained to Ollie in detail what they would likely do and that he was brave and strong and while the anesthetic likely would hurt a bit going in, I'd hold his hand, we'd hug Llama Llama Blue Pajamas and use our best Kids Kicking Cancer power breathing to get through it together. My ever pragmatic Ollie went to sleep with the final words, "Mom I really hope it's not cancer again, but if it is we'll just kick lymphoma's ass again! Love you!"
As he fell asleep I lay there hugging him and crying silent tears so as not to upset him while I thought about how brave and strong he is and how unfair it is that we have to put him through more after all he's already lost. And I prayed that this is not cancer again and only minor whatever it is. I thanked my amazing God for letting him live so far and asked again that we not have to fight again, but if we must that he will win again. Then I slept poorly and got up to go to hospital. Ollie like the champ he is got up in good spirits, ready to show lymphoma who is boss.
We talked about how things would go on the way to the hospital and then listened to his Bye Bye Lymphoma playlist the rest of the way. Neither of us ate because we were too nervous and decided we'd go to Tim Horton's for a treat and the Toys R Us for a new toy after to celebrate his bravery. He needs nothing, but I have learned that the promise of a prize after doing the hardest things is a small price to pay for his calm and courage.
We got to CHEO MDU, and dermatology arrived promptly. We answered a few questions and then they got to work. One of the doctors knew us because she'd done a rotation as a student with Dr. Abbott when Ollie was still in treatment. She reminded us what an excellent doctor we have and I agreed telling them how amazing it was that they would come the very next day after she asked them. I have seen how she interacts with others in hospital. She always treats everyone with respect, affection and gratitude. Her superpowers seem to be empathy, and building relationships (beyond getting kids well obviously), so I am not surprised really that when she asks for help she gets it quickly. That has been our experience each and every time she asks for a consult somewhere in the hospital for us.
They checked out his back and confirmed the smaller raised bumps all across it were dermatitis from his sweating (which we knew). They confirmed that the spots were slightly raised and could be lesions or a raised rash of some sort. I had to flag for them that Ollie was blind because as usual that doesn't pop up prominently on his chart and I'd already put his mobility cane away so there was no obvious sign of his blindness. This is an example of why they often call sight loss a hidden disability and we continue to raise awareness, even among medical professionals. So they took extra care explaining everything to him, letting him feel the package for the punch biopsy they'd use and explaining how it works.
He laid down with Llama under the opposite arm and I held his hands from the end of the bed so he could squeeze them. I'd put on his playlist for calming and distraction. The local anesthetic was painful for him, but he squeezed my hands hard (a wonder he's never broken my pinkies) and breathed deep while counting through it. Counting also helps because the brain has to focus on remembering the number sequence instead of focusing on the pain or discomfort. We learned that one during radiation as we'd count together over the speaker what was left on the timer.
Once it was frozen, he said it felt weird, but not bad. Because he was so good they were able to take two biopsies to be sure that they had a good tissue sample. They finished with two stitches in each which he stressed a bit about as he's never been awake the few times they'd put a few stitches in him. Bandages covered them and he was all set. They told me two weeks for the results. I asked couldn't they compare it to his earlier ALCL tissue sample (is kept for 20 years for reattach and comparison) to speed up the process. Their standard answer was that it generally takes 2-3 weeks for skin test results. Julie later told me that she knew Dr. Abbott would be pushing for faster results if possible. The first time they had to send his sample to The Ottawa Hospital, so we had a diagnosis of Non Hodgkin's Lymphoma in a week, but had to wait a second week for ALCL. Given it is a very rare form of cancer with only 5 kids in all of Canada getting this each year, we get that. We remain hopeful for faster results, but that doesn't make the wait any less stressful.
I let him play hooky from school after going to Tim's and Toys R Us. He'd been through enough for one day and I needed him to be near me. His teachers said not to worry and know that they were praying for fast results and good news.
I managed to do a couple of hours of work on the laptop sitting with him while he played quietly and rested. He was tired again, but this time I knew it was emotional and mental exhaustion from the anxiety and holding it together because I felt that way, too.
Mario was supposed to knock off work early enough for me to take Abby to a medical appointment that afternoon, but was still online fixing a network problem when I left so Ollie watched his shows quietly. Two hours later when we got back, Mario was still online fixing it! So he promised Ollie he would take Friday off to make up for it and Ollie could stay home with him to rest and play quietly. He'd woken up really tired and kind of grumpy on Friday so this seemed best anyways and his teacher said he was already ahead in his work so not to worry. Friday morning he and I had his online session with his CHEO child psychologist. This is an appointment that Ollie makes each time at the end with Dr. Emily Johnson. He chooses if and when he thinks he'll need to see her again. Typically it's 2-4 weeks between appointments. He was angry at me for "making Dad" put the tires in the van before they could play today and taking "his time with Dad" away. As we delved into things further it became obvious that he had a lot of big feelings about the biopsy and having to wait around for us to spend time with him the day before. This is a throw back to inpatient cancer days when anytime he was sick we dropped everything to simply be with and play with him. Both for his sake because he needed the distraction and joy and for us because we feared the worst and didn't want to have any regrets. So for him when he's sick and there are procedures it's all about him again and he doesn't understand that we still have to juggle it all around our "normal" life and obligations.
It all came out in his session that he was predictably mad and sad that he'd had to have the biopsy procedure and how none of us felt the pain that he did. He said, "I know you all feel pain in your hearts for me, but you don't feel it in your body, too!" And I cried and told him he was totally right and daddy and I wished every moment that we could take the pain instead of him and how brave he always is and how proud we are of him every single moment. And then he hugged me and said he was sorry for making my heart hurt. It was all I could do to hold him and hold my fragile heart together as I marveled at his incredible love and empathy at a time when he was the one hurting most. And as always this was my sign to keep going and to hold on to my hope. Because if he can keep going and being humane no matter what, so can I. People think I'm strong, but the strength in him is often what has propelled me forward when I am uncertain if I can. By the end of the session Ollie was feeling better and I felt like I had an emotional hangover. Dr. Emily is incredible and asked me what additional support we need and reminded me to reach out because she and the amazing psycho-social team were there for us all.
Mario is remaining stoic and says he is certain that it's not cancer. Abby is quiet about it all, but knows we're here to talk. Sometimes like daddy she expresses her fear in anger, so we've seen her temper flare a bit more easily and regularly the last few days over things she'd normally not get upset over. Ollie and I are more easily brought to tears in frustration the past few days. Time to make another appointment for family therapy.
Friday Ollie enjoyed his time with daddy while I ran errands and took Hope out to the CNIB Canine Centre in Carleton Place for a routine eye exam. Having the bit of time on my own was therapeutic and as luck would have it fellow ALCL cancer mama Lisa whose daughter Annika has been a constant inspiration to us called me from the UK to talk it all out. Annika relapsed a few months ago, but is doing well back on Lorlatinib and Lisa had some suggestions for next steps in case we need a new plan. I don't believe in coincidences, just signs and help from God, so this was another perfectly timed shot of help and faith for me.
Last night we went to the Imagine Dragons Concert at the Canadian Tire Centre in the Candlelighters Ottawa suite as their guests. We ended up having the entire suite to ourselves! What a luxury! Imagine Dragons have been on Ollie's Bye Bye Lymphoma playlist since about this time two years ago when he was having brain and spine radiation. We'd been pretty excited to go for the last weeks and tried not to let this week's events put a damper on it.
We had a very sweet member of the Canadian Tire Centre's staff taking care of us and she told us that by day she was a grade 2 teacher in Barrhaven. She obviously understood what Candlighters does and asked how we were associated, so I told her Ollie's story and she was so sweet and touched by his story and then very kind to all of us, even bringing the kids each an ice cream bar at the end of the night.
We wore masks when sitting down front as it's open there and apparently there were 10,000 people there last night! Even Abby who often asks when we can stop wearing masks everywhere commented that it would be crazy not to mask there. Thankfully we didn't interact with many people on the way in or out as we arrived early and left a little early as Ollie was getting tired son we didn't stay for the very end and encore as he'd already heard all of his favourites by then anyways.
Ollie really enjoyed it and Abby was impressed with the experience as she'd never been to a concert before. Not that she let on to us - but she hasn't taken her new outrageously expensive concert t-shirt off since she got home and I heard her talking to her friends about how cool it was. 😎 Mario enjoyed it and I was glad to do something "normal" with the kids without the bigger risk I'd expected, but I was worried about Ollie who was flushed (it was warm in there and so was I) and pretty tired despite the nap he'd taken earlier. He did get up and dance and sing for every one of his favourite songs, so that was a good sign that it was just normal long days and emotional week fatigue.
Our plan is to see his CHEO team on Monday for his regular checkup and blood work and talk about a plan just in case we need one if the news isn't what we hope (with gratitude to Lisa again for some possible next steps recommended from her own experience). And after that we'll just keep putting one foot in front of the other, living our days as we have over the past year with faith guiding us and cautious hope continually moving us forward.
Thankfully we also have his 6 month MRI, CT, x-rays and bone density scans booked on May 11th (delayed by a month thanks to COVID) so that will give us further clarity on his stability. And I talked to the lovely scheduling person Debbie in Dr. Dollin's office last week about Ollie's surgery victrectomy and laser eye surgery on his second eye and they hope to schedule it by late May (again delayed by COVID). His pressure is holding fine, but we see evidence of his cataracts becoming more prominent as his left eye now looks more grey than blue. The show and planning must go on despite anxiety and waiting for biopsy results.
We will get through this and promise to keep you posted. In the meantime we appreciate your positivity and prayers sent our way for speedy and good news. Be well and grateful for all of the blessings that you enjoy every day. We try so hard not to take ours for granted now that we understand how fast it can all change.
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