Critical Caregiving Mamas

I've been thinking a lot recently about motherhood and how we are supported by other mothers as we raise our children. When you become a mother for the first time it can strangely be a very lonely time. A time when you're so busy and overwhelmed that you don't always have the time or energy to maintain friendships with other women, and yet you so desperately need them to feed your soul and keep you sane. Eventually you fall into your "tribe", often becoming closest to other mothers, who have children of similar ages who are your children's friends. I am fortunate to have such a tribe of strong mamas around me daily. But cancer has also brought an unexpected bounty of mamas to my extended tribe.

Before cancer I always made it my goal to try to be as good as I could at motherhood, even though I found it frequently challenging. I always told myself that at the end of my life when I have left my legacy, I want it to be that I was a good mom and raised kind humans.  

The day to day trials and tribulations that you have to go through as a mother sometimes seem like an endless line of thankless tasks. And then there are the moments of pure unadulterated joy with and pride in your children when you know all of the hard moments were worth it for that one beautiful, heartbursting moment of mutual love and adoration.  

I've been complimented very often over the past year on my parenting and how I have handled everything about Ollie's illness as a mother. People marvel at my strength, just as I have done same for others I knew who handled similar before me. My response is always the same as theirs was...that you just do it, because what else would you or could you do? We had to save our children. It's really not so extraordinary when you are one of too many of us who have had to fight this battle. Some of the best mamas that I know today have been through a lot of unimaginable things. 

That's not to say that the dads aren't amazing parents through this, too because they are and I am really grateful that my kids have a devoted father who has been there every step of the way, also doing everything to save our son. And I met several fathers who were their sick kid's primary caregiver, but obviously it is most often the mothers like me. So I want to take a moment to pay tribute to the mamas with sick kids who have walked my path before me and with me. 

There's an old Sick Kids Hospital Mother's Day commercial called Sick Kids VS. Momstrong that shows moms as superheroes, but not because they're always strong. Quite the contrary, it shows us as vulnerable, fearful, agonized, exhausted and yet we persist. We get up from our knees, wherever we have lay down curled up in a ball, or just get out of the shower where we were sobbing in private agony. We put on our armour and we go back into battle for our kids because they need us and we can't breath without them.

At the beginning of this I knew moms who had kids with long term medical issues and a couple of moms whose children had leukemia. Along the way, other friends have connected me to mothers that they knew who have fought for their child's life against cancer. Still others I have met online through social media and cancer forums. Some are from Ottawa, others from Toronto, and many live in different cities around the world. I've never met any of them in person, yet they have been selfless and unwavering confidants and advisors. If you would have told me a year ago that I would go through all of this and that there would be amazing women who I had never met who would step forward to support me in my worst hours, I couldn't have believed that this was really possible. 

Why would someone put themselves out there to help someone they don't even know, bear all the agony that I was going through and possibly trigger their own post traumatic stress disorder?! Yet they did! You would think they would want to hide from anything that would remind them of their kids being so sick, and yet there they were coming forward willingly, offering support and giving advice. Holding me up and pushing me forward, often when I didn't know how to keep going or what to do next. So many fierce, yet kind caregiver mamas like: Samar, Christine, Melissa, Emily, Julia, Lisa, Kelly, Sam, Chris, and Marion. 

Or even stronger mamas like Carolyn and Jill who fought, but still lost their babies. They did everything right as mothers and caregivers, but senselessly and unfairly lost their babies anyways. And still these superheroes persist in continuing to support people like me, so that we can try to hold on to our babies in ways that they were unable to. True selflessness. 

I am also blessed to have many amazing women, and many great mamas, in my everyday life who have nurtured and mothered me and my family over the last year as we battled Ollie's disease. I have written about many of them and each and every one of them has my deepest affection and gratitude for always being there when we needed them. 

Women are amazing and at their best when they're good to each other and raising each other up. Thank you all for being part of my tribe.

Another New Normal

It's been a good week. Ollie is happy to be "home" (at least in our temporary Toronto home, but I always say home is where your people are, not in the dwelling that you live in), even though Monday and Tuesday he had to be back at the Day Hospital bright and early for bloodwork. When he got there on Monday the team on 8B in the Bone Marrow and Stem Cell Transplant Unit had left him a certificate and a special gift for his strength and bravery in getting the transplant. 

They also had to check his Tacrolimus (immunosuppressant/anti-rejection drug) levels. On Tuesday his level was high, so they bumped down the dose a bit for the rest of the week. 

The great news was that he was otherwise well and didn't have to go to hospital Wednesday or today, so two "normal" days of being home. I think we've played with every toy he has here!

The first thing he wanted to do Monday was order new "transplant gift" Beyblades from It Came From Japan. The owner, David is a super nice man (thanks for the intro, Kim Aube!) and Ollie's story has touched him (he has a 9 year old boy of his own) so he had offered to meet me instead of shipping them so Ollie could have them right away (his business is an online ordering). Ollie was pretty thrilled and we've had many epic battles this week.

Abby is preparing to leave later this week, despite the fact that we're now uncertain exactly when school will start for her. So this week she and I have ventured out a bit while Ollie napped and Mario worked. She was in love with Doc Martens, so we went to the outlet to get her first pair. 

We also went to the Lego Store and got Ollie some of the Ninjago sets he can't get elsewhere. 

Lately Abby and Ollie swing from happy to be in each other's presence to bugging each other, which is a sure sign things are returning to normal for them. I'll miss the sweetness they showed each other when he was sick, though. 

This afternoon Abby and I did a whirlwind tour of Casa Loma. It was pretty dead, so a great place for a socially distanced activity in public. I was supposed to first visit Casa Loma for my grade 7 trip (and then the bus was late getting into Toronto and we missed it!!!), so Abby is about the same age as I was when I learned about it, but funny enough I never actually made it there until I was in my twenties and visiting one of my best friends for a weekend in the GTA and asked if we could go (thanks, Walker!). 

Abby enjoyed it and the kids have become accustomed to their father and I dragging them around museums, old houses and forts (last summer it was Fort Henry in Kingston and Fulford Place in Brockville) on family trips.

I'll really miss her not being with us (I miss her when she's away for a week of overnight camp!) for at least a month and am praying that things continue to go smoothly for Ollie so that we can get home and be together again soon.

Hopefully tomorrow's blood tests are good and we get to continue as we have been this week with a few less hospital visits. 

Together at last!

I was going to keep you all in suspense until later in the blog, but I'm just too excited to tell you...we've busted out! Discharged on Day +34, baby!!! Back to our rented condo in Toronto for the next month and if all goes well we'll be back in O-town before end of September! 

But I'm getting ahead of myself...getting to this point alone was eventful this week.

To encourage Ollie to eat, drink and basically be normal over the past few days, they began reducing his liquid nutrition (TPN) and fats (Lipids) and disconnecting him from his IV lines for several hours daily. He was pretty psyched to move around unencumbered, but not thrilled to be eating as so far nothing but dill pickles and chicken noodle soup tastes good to him. 

We worked on drinking water and juice and physically moving a bit more.

We made some crafts...first up was this sign that he insisted on posting on his door...

The dedicated child life specialist, Madison answered the call as always and came to play a couple of days.

Next up on the crafts was bracelets...Ollie asked me to help him find the letters to spell out...

Team Ollie! And then he made one for each of his front line team...so Mommy, Daddy and Abby all have matching ones.

He was happy just to be able to sit on the day bed (where Mommy sleeps) instead of his own and to actually wear a hoodie because he wasn't hooked up to tubes on his arm.

Yesterday he was so excited about the day's plans that he woke up at 5 am completely ravenous and wide awake. 

So chicken noodle soup for breakfast! And earphones and a movie after so mama could sleep a bit more!

This was why he was excited...Abby had been granted approval to come and visit thanks to the Patient Assistive Care Team (PACT) advocating on her behalf as the sister and his donor. They've been apart for 5 weeks now and it's been hard for both as her lifesaving stem cells fought inside of him to graft and become part of him. At a time when they're more connected than they've ever been they could not be together. All that was ending yesterday and he was over the moon to see her.

We all spent the afternoon together, reunited and so so happy. 

We played Nintendo Switch games, talked, danced, watched an Ollie rock concert, and just generally were silly together.

I loved that our nurse, Corie just took it all into stride and happily worked around us because she knew it was a special time.

Abby and I took a bunch of his stuff back to the condo last night as they had told us Ollie might be able to go home on Sunday! 

This morning at 7:30 am the boys called us to tell us he might NOT be able to come back today. His magnesium levels were low because  his Tacrolimus medication (immuno-suppressant to avoid rejection of the transplant) can have that impact. I told them that the pharmacist on the Bone Marrow and Stem Cell Transplant Unit had told me on Friday that he'd likely have to take a supplement and we'd know how much based on tests this morning. 

A couple of hours later they called back to say they were giving him a magnesium infusion and after that should be able to be discharged.

Abby and I had been frantically cleaning the condo to ensure bedding, surfaces, bathrooms, kitchen and floors were bacteria free before he came back.

Finally, we went over to get the boys. Daddy moved what was left down to the van. We had a dressing change...another shout out to nurse Corie who was so patient with Ollie and let him help to safely remove his own dressing which is normally traumatic and painful for him. 

Then Ollie wasted no time getting shoes on (his first time wearing regular shoes since May as his feet are no longer swollen!!! Stem cells are amazing!) and determinedly walking to the hall to get into his wheelchair to get out of there. 

The nurses hooted and cheered while he left including some of our many favourites like Jenn (the lovely charge nurse who suggested signage to identify Ollie's blindness to have people help him better), Corie, Liz, Lilla and Emily (sorry that we didn't get to see others like Cherie, Ayisha and Hailey). We are grateful to all of the nurses, doctors, child life specialists, the music therapist, art therapist, Clowns A. Lebut and Fern, Fred the chaplain and the entire PACT team. I was in tears leaving just thinking about what we were leaving with and all we had to get through to get too and complete this part of the journey. 

One of the nurses a few nights ago asked me about Ollie's blindness and I explained to her (the Cole's Notes version of ) all that had happened to my unstoppable lymphoma warrior over the past year. She was incredulous after and commented that they as nurses on this unit often forgot that the cancer kids have had so many trials and tribulations before even arriving at transplant. 

Getting back to the condo (after I went to the pharmacy to pick up his 9 meds and supplements), Abby was overwhelmed and hangry and arguing a bit with Mommy and Daddy. Ollie comforted her and insisted we needed to give her space to feel more in control. He's learned a lot this year about emotions and how to handle them.

About an hour after being home with us and eating a bit of pasta, Ollie took a nap.

Abby did stone of her own art therapy...

And when he woke up a couple of hours later be willingly ate some hummus and pita and drank a juice box, proving that the doctor was right and kids federally eat and drink better at home. Normalcy. So simple and so underrated.

We still have to go back to clinic tomorrow and Tuesday mornings for bloodwork as they may need to adjust his dosages to ensure the meds all work optimally together, but that's a small price to pay to be together at last!

The PICC Fix

I watched the sun come up over Sick Kids, the Toronto General, Mount Sinai and Princess Margaret Hospitals last Saturday morning morning. I wasn't up because of a burning desire to commune with nature, but rather with eyes burning from fatigue, banished by my son from his hospital room because he was angry at the world and mama got the brunt of it.

It was a really rough weekend. Mario spent Saturday evening and Sunday during the day with him. He was so upset about the IV and PICC issues and then to add insult to injury, because he had to go into the OR today to get his PICC fixed, he had to have ANOTHER COVID-19 test (#6!!!)!!! 

While Mario did his best to get Ollie to eat real food (especially as they had to stop the liquid nutrition called TPN because his PICC wasn't working properly), everything was overshadowed by Ollie's stress and agony over the IV and PICC. 

He did have moments of fun with Daddy when he let himself.

Ollie had a rough Saturday night with lots of bad dreams and waking up missing me. Naturally he loves daddy, but as he's told me before, "Daddy is best at fun and Mommy is best at helping with feelings." Mario basically told me same Sunday. They waited for me to do the COVID test yesterday and Daddy stayed to help us. 

Mommy offered to let Ollie help her to do a COVID test on herself. In the end Daddy took one for the team and had Ollie help him to put the swab up his nose to show him that if he stayed calm it won't be so bad.

It took a while, but we did get Ollie's done with minimal crying and anger. 

Once that was done, Ollie was happier and more engaged in play. He still had moments of upset and anxiety on Sunday knowing that he'd likely have to have the PICC replaced in Monday. He also had a restless night Sunday.

On Monday they confirmed that there had been a cancellation in the OR and they could take him at 2:30 pm. 

It was our first and although not a bad one, hopefully our last experience in an OR at Sick Kids. It was done through the Image Guided Therapy (IGT) unit. They were prompt.in bringing us down to the IGT on the second floor, but then we waited an hour to go into surgery. Thankfully Ollie was calm and slept while waiting. They didn't even need to give him any extra meds to relax him before the general anesthesia.

It took about an hour and I waited in their very socially distanced waiting room. They had to remove his previous size 5 PICC and replace it with a size 4 because they wanted to give his vessels a break. Fine, but if he rejects the stem cells for any reason and we have to do a second try at it, we'd likely have to go back up to a bigger line for transplant. Since this is central line number five in the past ten months we are going to be cautiously optimistic and hope that he'll only have this one in for a few more months post transplant to allow them easy access for bloodwork and to push meds if ever needed and then he'll never need one again!

When he came out he was okay in recovery, but became angry as he became more lucid back in his room. Mario and I both stayed until he was calm. We've seen this many times after surgery as the anesthesia seems to make him aggressive. 

He did finally calm down and I was able to head to the condo to see Abby and my mom and stepdad who had come up on Sunday to spend a few days with us before Abby leaves for Ottawa. 

As always Mom arrived loaded with groceries and fed us too well for the few days they were here. 

They would have loved to see Ollie, but because of COVID and him being in the Bone Marrow and Stem Cell Transplant Unit, that wasn't possible, so they promised to come back to see him when he's back at the condo before we head back to Ottawa. He was very sad not to see them in person.

Tuesday Ollie was pretty tired from his surgery, but other than a bit of tenderness in his arm, he felt okay. 

And so began our more aggressive trial and error with solid foods. He can't be discharged until he's eating solids and able to take his meds orally. 

So far there are few tastes that he likes, but my family (especially on my dad's side) will appreciate that dill pickles are something that he does want. Wednesday night he managed to eat a bit of a ham (no deli meats for him due to possible bacteria, but he can have the packaged Maple Leaf without preservatives and as long as it is a brand new package), mayo and pickles sandwich and was thrilled to find something else he can tolerate. Watermelon is also okay. So are ring pops! LOL We'll keep trying until he is eating enough calories that they can take him off of the liquid nutrition (for now they have reduced it).

 

As for meds at home, he'll be on Tacrolimus which is an anti rejection drug; his Lorlatinib to ensure all of the cancer is gone and there's no relapse of lymphoma; Ondanzatron for nausea; Hydrocortisone to regulate his adrenal system until it can function again normally; and vitamins. Thankfully they will be spaced out several times a day and he's no stranger to this type of routine. We've started the Lorlatinib two days ago and the Tacrolimus orally today and each day this week we'll work up to having them all orally administered.

On Tuesday he also had his weekly ECG to check his heart and a visit from Optomology. His eyeballs have been hurting him on and off the last few days. It could be the after effects of radiation as we saw about a month after his treatments in Ottawa, but our fear is always that it's lymphoma still in his brain. Thankfully the Lorlatinib would target any lymphoma cells left and the optomologist said she saw nothing to be concerned about, that the optic nerve is clearly significantly damaged but doesn't look inflamed as it once was. She suggested it might be dryness or fatigue causing the pain, to monitor it and let them know if it persists.

We're finally moving in the right direction again and plan to stay that way so that he can come back to the condo over the next week and maybe even be able to spend some time with his sister before she goes. 

Thanks for your continued interest! 

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...