Suffering and Shortcuts

*Note:

This post includes some photos of the effects of Ollie' s last, very harsh round of chemo. While I don't consider the photos gross or gruesome, I realize that some may find them upsetting and if you are one who might, I suggest you skip this post. Rest assured that his pain is being well managed and his post-chemo burns and bruises are healing. 

On Sunday Abby and I went to mass while Mario was with Ollie at CHEO.  I am always comforted by mass, but I do find the prayers of intention difficult these days as I know they'll read Ollie's name under the sick that we should pray for. I tear up every time and usually whomever I'm with (Marie-France, Maria, Claudia, etc.) does, too. Each time I pass around tissues and compose myself to get through the rest of the mass. Sometimes a song lyric makes me weepy, too. Mass is emotional for me because it is the place where I feel most that everyone around me is praying for us. Truly I know you're doing it in your own homes, too. 

On Sunday, our priest Monsignor Hans delivered a homily that felt like he was speaking directly to me. So much so that I took notes, which Abby thought was weird (I guess it was, but didn't want to forget any key messages). He talked about suffering and how there are no shortcuts through suffering. Boy can we relate to that.

Ollie got second degree burns from the adhesives on the bandaids and medical tape on his body after this round of chemo.

 He also has bruising and bed sores from his low neutrophils (still neutropenic at 0.1) and post-chemo reaction. 

Monsignor spoke of faith as a long game and how these are confusing and dark times in the world and faith is needed more now than ever. He said the way forward will be long and unknown, but that we must be open to the things that are coming. Once again it was like he was speaking about our situation specifically, even though I know he was referring to the seeming lack of faith, kindness and caring for our fellow humans in the world right now.

He also asked:

- Has my faith grown stronger/deeper in the last 10 years?

- What have I invested in my faith?

- How can I strengthen my connection to God?

- How can I connect others to the faith?

I was able to agree that in the last handful of years I have deepened and invested in my faith by participating in so many activities in the Church. And by extension I have gotten so much more back from my investment. Peace, faith, positivity, dear friends, strength, etc. That investment is what is sustaining me through this, the most difficult time of my life to-date.

And from there he went on to talk about community and evangelism explaining that it is about bringing faith to others who have lost it or never known it. This struck me as uncanny because Charity (dear friend who is also the youth minister) and I had a conversation 4 years ago about how she thought I was an evangelist for community. At the time I laughed, but recently I called and told her I now understood that she was right and I am an evangelist. Not in the Billy Graham kind of way, but rather in that here I am sharing our story that is resonating with so many following it, being honest about my faith and its role in all of this and people are responding. Here are some examples of beautiful messages I've received:

My response to each of them was that it helps me to know that if some people rekindle their faith because of our situation, then something positive is coming from this experience.

So in this time of fear and darkness in the world right now, we are now also faced with the Coronavirus and the death and fear it is leaving in its wake. It's actually affecting us directly, in fact. Don't worry, we don't have Coronavirus, but Sick Kids Hospital called me today about his stem cell transplant and given world concerns over it's spread, health organizations around the world are now recommending that all transplants with anonymous donors only happen right now if absolutely necessary. Also, the first donor couldn't be reached and the second is willing, but can't do it until late April. Sick Kids doesn't want us to wait, but feels that the best chance now is Abby. 

They said with the anti-rejection drugs today, they have done many successful half match transplants. If he does reject, given timelines and safety concerns now, the backup would be myself or Mario. 

Our funny, strong, dramatic daughter will now be the best sister ever giving her own life saving stem cells to her brother. 

 I wept quietly while talking to the Bone Marrow Transplant team. I so hoped we wouldn't have to ask this of her, but she has said from the outset that she would absolutely do it. In fact, she has prayed about it every night.

There is good news in that we did bank her cord blood and they're going to look at whether there is enough volume to use. Also, because of her blood type if they have to harvest directly from her they plan to take her blood instead of her bone marrow. They'd basically give her an injection called the G-CSF (Ollie has had this after each round of chemo to boost his production of white blood cells and neutrophils) once a day for four days, then take her blood. It immediately goes into a machine like they use for  dialysis and separates out her rich stem cells. Normally this takes a day and would be done right before his transplant.

They now want Abby in Toronto on Monday to do her work up and then we'll come back until Ollie is needed in Toronto for March 23 to prepare for his radiation to start April 1. So harvesting/transplant day is tentatively April 9. 

So many other things have happened in the last days, but all of them pale in comparison to this news. 

I want to thank the St. George School community for their generous donations to help us with expenses for our three month trip to Toronto and my brother for starting a Go Fund Me campaign to help us with expenses and covering loss of income now that I have officially applied for employment insurance for caretaker leave. People are overwhelmingly generous and we are so grateful, but also mindful that so many have already helped us enormously in so many ways. We mostly just need your continued positivity and prayers. And hugs (when you're well)! 

"Boring" Weekends are the Best!

 It was a quiet weekend of togetherness...

 And seeing a few friends for visits and retail therapy...

And pizza...

More robust blog post coming on Monday with next steps...

Hugs to all!

Bacterial plan changers

Ollie has not one, but two bacterial infections. One in his PICC line (apparently very common) and the other systemically in his body. Over the next few days they'll confirm the exact types, but in the meantime they have him on 3 different antibiotics and will make any changes needed when they know. 

In the meantime we are told it likely means 10-14 days in hospital. This means no Toronto next week. Ironically I didn't want to go twice in two weeks and tax Ollie that way, but didn't get my way originally. Now it seems I am. We're waiting to hear from Sick Kids Hospital on how or if this changes the rest of the plan. I am hopeful that we'll still go for end of the month and just do scans there before we start days later. 

Ollie is pretty tired and the mucusitus was very painful today so he slept a lot. We're all bummed out that this stay will be longer than hoped, but the show must go on. 

Not much else to report at the moment. Wishing you all an uneventful and peaceful weekend.

Landslide

Just when you think everything is finally going right, you hit another bump in the road...

Wednesday was a good day at home despite fatigue and a bit of pain. He had slept with Mario in the living room the night before as he was too weak to climb the stairs to bed.

At one point yesterday he wanted a bath, so I helped him get upstairs. It took a lot out of him, so he stayed up there through until this morning.

Ollie had a hard night last night with pain from mucusitus (canker sores in his throat from chemo) and hardly slept. So we dozed this morning for a bit. When we woke he seemed warm, so I took his temperature. It was a bit high at 37.4, but I waited 15 minutes and took it again. 37.8. Borderline fever. He wanted to go downstairs so we slowly made our way down them one at a time until we reached the sofa. There he practically collapsed again. Abby (who was home due to the teachers strike) kept an eye on him while I frantically started repacking suitcases for him and I, knowing if I took his temp again and it was over 38 we were back to CHEO. I had intended to do this yesterday just in case, but did other things like laundry, cleaning out the freezer and submitting an online EI claim instead. 

When I came down 15 minutes later and took it again it was 38.4. Back to CHEO. You don't give an oncology patient Tylenol as you don't want to mask the fever coming into Emergency. So I called and emailed his oncology coordinator to let her know we were coming in and to alert Emerg. Her response was simply, "Shit!", which I appreciated and at least it made me laugh when I was on the verge of tears. 

Then I left a message and sent an email to Mario, followed by a call to Stephen (and MF) to see if Abby could hang out with them today after all. Amazing friends that they are, they said they'd be over in 10 minutes to get her. Poor Abby is what we call a lolly-gagger. I snapped at her when she wasn't getting ready fast enough and she was stressed and mad at me when I left, despite my apology. It's so hard to balance it all especially in moments of great stress and I felt bad leaving her. 

Ollie was sad, but resolved. He knew what we had to do and accepted it. This was a far cry from our first infection where he had a complete melt down and ran away from me to his room. The only question he had this time was if he'd have to be in isolation again. I didn't have a real answer for him. 

I put our suitcases and a requested bag of Beyblades in the Jeep and ran back in to get Ollie. Slowly we made it to the car. Thank God for that because at 33 kg I couldn't carry him. 

On the way to CHEO I asked Ollie how he felt and he replied that he was sad. I told him I was, too, but we've got this and you'll soon be well again. Then the Dixie Chicks version of Stevie Nicks' "Landslide" stared playing on the radio.  Music is always emotional for me and has such power to make me respond to what I am feeling. Tears began running down my cheeks.  

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Normally I sing and it lifts me up. Today I couldn't. It was all I could do to control my tears so I could drive and not sob loudly as I didn't want Ollie to hear and feel depressed, too.

Now logically I know this is likely to be a short lived infection and visit. But I'm experiencing a bit of post traumatic stress disorder (PTSD) now as 49 days ago we were exactly here thinking same and stayed 47 days while my son had lymphoma in his cerebral spinal fluid, was very sick and became blind. So now I'm stressed thinking we're gong to have worse happen and he'll miss his stem cell transplant. 

So I unwound myself, took deep breaths and focused on just getting to CHEO and into Emerg. 

Fortunately Ollie and I are both getting more practical about accepting our situation. Ollie didn't even fight or cry when they came to take blood cultures. It used to take 3 of us to hold him down for that. I used to say, let's wait to eat until we get to our room. Now I know it's likely 3-4 hours of waiting and we need to eat so we ordered from Tray Services and ate what we could. 

Ollie had had nosebleeds last night and this morning and a pretty major one in Emerg. The size of the clots were incredible and clogging his nose so much he was losing his mind trying to blow them out while the nurse and I tried to keep him from blowing. Finally using nose pinchers (that he hated) we got it stopped. The doctor confirmed that the bloodwork shows that he is now neutropenic (level 0 meaning no ability to fight infection) and platelets were only 8. Platelets were ordered to be sent up to our room.

Mario arrived (I told him to finish up work as there was little point in all of us waiting for something to happen) with McDonald's requested by Ollie, but in the end his mouth hurt too much to eat it.

When we got into our room (Room 2 which we've never had so I guess we needed to come back!😜), all of the nurses and Dr. Ali waved us in with sympathy, telling us they'd missed us, but were sorry to see us again and knew we wouldn't be here for long.

The platelets transfusion began (thank you anonymous kind donor) and Ollie promptly fell asleep, so I left the boys to bring in our suitcases, go down to admissions to get my pass and to pop out to Walmart to get Melatonin Gummies (the ones here are mint and what kid likes mint?!), a few snacks to feed my warrior when he wakes hungry in the night (Tray services is closed from 7 pm to 8 am!) and a new toy to reward his bravery and determination in accepting this latest setback with grace. Yes, I'm buying happiness here, but at the moment we need to get it however we can! I keep teasing that I'll beat the greedy brat out of him later when he is well.

Mario left to get Abby at about 7:30. I got us all settled again in our latest home away from home. Saw a few parents here who were surprised to see us again and sympathetic.

Now he's snoring away and I'm about to as well. 

So the clock has reset to Day 1 of admission. Praying that it's like our pre-Christmas visit and only 3-4 days as we need to get this boy well enough to get to Toronto for our consult and his transplant. Thanks for your continuing faith in our strength to get through all of this. 

The ending of the new beginning...

Tuesday started with the now routine complaints from Oliver wondering when they were going to come and get him for his lumbar puncture with intrathecal chemo. He'd been fasting for it and hadn't eaten in 13 hours by the time they took him at 10:15 am, although I had tried to get him to eat something at midnight to no avail. He'll now get these LPs weekly on Tuesdays until his stem cell transplant, just as maintenance to make sure no more of those jerky lymphoma cells get in. So the LP went well and he ate toast out of my purse in recovery. My friend Kevin always teases me that I'm like Radar from MASH and can source anything and I'm doing it at the hospital too to be able to get Ollie whatever his heart desires, especially after procedures and hard stuff. 

So after Ollie had lunch (I got busy and completely forgot I hadn't eaten until 4:30...easy to understand why I have lost 12 pounds in the last months without noticing), the doctors came around on rounds and gave him the good news that they had no medical reason to keep him any longer if he felt well enough to go home. I think we were both in shock that this endless visit was finally over. We called Mario and arranged for him to come and get us by 3:30 and to be here to participate in a special event at 3:30.

Next the VAT team came in and changed his PICC dressing so we wouldn't have to come back to CHEO to do it tomorrow. Ollie was starting to get agitated, so I kept his mind off of it by asking him to tell me about the rare Beyblades he wants. At the beginning of all of this I'd just talk over his anxiety. Now I've learned to re-direct the conversation and get him talking about something he's passionate about to take his mind off of it. I ask coaching questions to try to lead him down the path I want him to be on to reduce his anxiety and anticipation of pain.

Next our Nurse Christine and student Nurse Anais changed his PICC caps, disconnected him from the line and fluids, and flushed and hepronized his PICC. When we're at home I do the last parts and it seems like forever since I have. They then gave Ollie his Neulasta shot to boost his neutrophils over the next week. We're still fighting with one of our insurance companies to pay the 20% of this $3000 shot, but thankfully the other 80% is covered by the other insurance company.

The psychiatrist came through our seemingly revolving door next. Ollie wasn't really wanting to talk much about feelings except the one where he felt we should be getting ready to go instead of talking. LOL I confirmed that we'll have a psychiatric consult in Toronto set up and thanked the doctor for his help.

After all of this Ollie went to the playroom to play Beyblades with his friend Lukas under the watchful eye of Maryse and volunteers in Child Life while I packed the many many things that have been acquired in our room in 47 days of living here . Lukas has been one of the only kids near his age on the oncology ward at the same time as Ollie over the last months. Lukas mainly speaks French and Ollie English, but they both understand the language of Beyblades and of loneliness and isolation from kids your own age. 

A little while later, Vanessa from physio came by wanting to practice stairs with Ollie to help him get in our house without Mario having to carry him. In typical Ollie fashion he was determined to show he could. After 47 days of not walking very far or doing anything very active, he stepped up literally and figuratively. He walked on his own steam up to the physio gym on the 5th floor (we brought the wheelchair for the ride back). The first step on the stairs was hard and it was evident he was nervous, but he kept going and then walked up and down three times! 

You wouldn't think 4 stairs for a normally active 7-year old was a big deal, but considering I sat in ICU a few weeks before so scared that he seemed to have had a stroke, was blind and may be permanently incapacitated, this was almost miraculous to me. He'll continue to get Outpatient physio over the next few weeks and in Toronto as inpatient when needed.

When we got back to 4 North I was told that Optomology wanted him to come tomorrow for another exam. Fortunately the team coordinator, Joanna called down to see if we could do it another day and they said come down now and we'll take photos of his eyes and the doctors will analyze them tomorrow. So off we went to Clinic C8 while Mario started loading the van with our numerous things. The visit including photos took about 15 minutes from start to finish. Amazing.

When we got back to 4 North everyone was ready for the big event. When a patient finishes their last planned admission on 4 North it is celebrated with a big noisy parade of nurses, health care aides, doctors, parents, kids, etc. The patient finishing gets to bang the gong and everyone cheers. I showed Ollie where the gong was and he excitedly banged it while everyone cheered and clapped. 

Then they told him to do it again because after 47 days and all he's been through he deserved it. 

There's nothing like the feeling of being surrounded by people who you barely knew mere months ago, but whom have been working tirelessly to make your child well and to encourage you every day to keep doing the hardest thing you've ever done in your entire life. I wish you all could have been there, too.

Ollie's friend Lukas presented him with the gift from 4 North for his bravery. They later hugged and it squeezed my heart so hard. 

We only wish Abby could have been there, but it was all last minute and happened on the day that she was on a field trip cross country skiing with her class. We've promised she'll be there when he rings the bell to signify he's beat cancer and is all done!

After the excitement, thanks to our dear friend Lori who brought a Merry Dairy Confetti ice cream cake last week that we'd been saving for a good day, we all had cake and enjoyed the happiness in 4 North together. 

As happy as I was, I felt sad saying goodbye to the staff and a few families we have gotten to know. I told our oncologist, Dr. Pinto that I felt like we were breaking up since I have to start "dating" a whole new team in Toronto. She promised they're still with us and will see us in the Medical Day Unit (MDU) before we leave and after we get back to follow up and keep him well. She gave me her email and hugged me so hard and I knew again how blessed we were to get these incredible humans on our team. It's so much more than a job to all of them and is clearly rewarding despite the inevitable heartache and loss that sometimes comes with it.

So we're home together at last. We're all tired and Ollie is still battling fatigue and mucusitus (like cancer sores in his throat from chemo), so we're keeping him comfortable with anti-nausea meds and popsicles. It may still be another long night, but at least we're home together and on the road to the next step to curing our warrior.

We're hoping for a few quiet days. Next week we're back at CHEO for another LP, scans, dressing change, etc. Then off to Toronto for a radiology consult add scans there for two days, then back here for 11 days and back to Toronto for the main event beginning March 25. 

If we go quiet for a couple of days, don't worry...we're just recharging and enjoying the simplest and most important pleasures to stock up on positivity and determination for what's coming next. 

A huge thank you to all of you who have followed, prayed for, fed our bodies and our hope, hugged, fetched for, sent messages of support and gifts to us. I can't believe we've been doing this for 5 months already (Abby didn't believe me tonight and had to count, too!), but that's in large part because you're all behind us making it so much easier than it otherwise would be. Big love to you all!

Accommodation and Changing Plans

Sunday Ollie had another lumbar puncture and a pretty good day. He felt well, ate like a line backer and negotiated to get everything he needed all day including a special visit from our friend Claudia to bring some borrowed Beyblades from Kassimiro who was so kind to lend them. When Ollie called to ask him if he could swap some Beyblades with him for a few days, Kassi immediately said yes and set about finding what Ollie needed. When Ollie fixated on getting them (he's desperately trying to control anything that he can right now), Claudia agreed readily to bring them the same day. 

It regularly brings tears to my eyes to see the lengths that everyone around us will go to simply to bring my son a bit of joy if they can.

Like today...Stephen accepted his Ollie mission to receive more Beyblade parts from Kassi's dad (Hannu who kindly delivered them), to pick up more Beyblades from our house, to pick up Timbits for the lymphoma warrior on the way and to chase down a delivery for us when I couldn't because we had a room full of doctors speaking to us at the same time. 

We also had a visit from Ms. Sherri who read to him using all of the funny different character voices and who took the time to teach Ollie some independence in using his wheelchair, asking him to put his own brakes and seat belt on so he'd know how to do more for himself.

In the afternoon, Christine (my sister from another mother and Gibby to those who know her best) came up from Kingston to visit. We unexpectedly had to go for an ultrasound so they see the veins in his neck in preparation for inserting a broviac in the ne freext two weeks before we leave for Toronto. It's basically a different kind of line or port where they'll do his blood draws and transfusions for the next part. Ollie was unimpressed at having to go at the last minute and frankly, so was I. This is how so many of our days in hospital go with little warning that there's another test or ordeal to get through before day is done. Fortunately we masked up for a reward of visiting the gift shop after and that made things better. 

Ollie also requested another visit from dear friends who were willing to drop everything to accommodate him, but by then, he was tired having gotten up at 5 am, and feeling a bit nauseous. So I said let's do it another day so he could rest.

We also learned today that the fourth round of chemo is officially over now because he did so well! He has a lumbar puncture with intrathecal chemo tomorrow for maintenance and will have one each Tuesday until transplant, but that's it. So if the LP goes well tomorrow and he feels well enough, we could go home tomorrow evening or Wednesday! Great news after 46 days here!

Naturally there were further  developments today that are making planning our day to day before stem cell transplant harder. Sick Kids Hospital called to say they need us in Toronto on March 12 and 13 for radiology consultation and scans at Princess Margaret Hospital. So now we get to drive to Toronto twice in a two week period before staying for 2.5-3 months. Unfortunately since they are killing his immune system in preparation for the stem cell transplant, he cannot fly or take the train due to the risk of infection, so we'll be driving twice and we are staying at a hotel nearby provided by the Pediatric Oncology Group of Ontario (POGO) as it is near the hospital and cleaned carefully for families like ours. 

Also, because there is a potential teachers strike on March 5, we've had to change the date of the stem cell swabbing event in Ollie' s honour to March 31. This makes me sad as I won't be here physically to support it and thank people for coming myself, but I plan to do everything I can to promote it before I leave for Toronto and recorded an interview with 1310 News Talk Radio today to be used closer to the date.

So the moral of the story is that this Planner Dawn is coming to terms with the fact that her life is virtually un-plan-able at the moment and likely will be for at least the next 6-8 months. That won't stop me from making them, they'll just be shorter term and there will be lots of backup plans! 😄

Cravings, Cuts and Confirmation

Yesterday Ollie had a lumbar puncture with intrathecal chemo. When he cane out of recovery he was ravenous and asked for pizza...

And...

Thankfully, friend Elliot was coming by the hospital so he kindly agreed to bring some (after I explained what they were since his body is such a temple that he's never had one!).

Ollie has had a great few days despite the fact that chemo has started again. He's not been nauseous (we're keeping the anti-nauseated flowing to be proactive) and his appetite continues to be huge. Not to share too much, but those of you with kids will appreciate that a lot of your time as a parent is spent talking about and monitoring bowel movements. Even Ollie' s BM's have improved the last few days! 😀 💩

We've been making a lot of lists...his oncologist was very impressed that the blind boy with lymphoma on chemo was writing lists. She couldn't get over his determination, although as she acknowledged, she has seen nothing but that from him for the last 44 days. 

 

Mario stayed with Ollie last night so Abby and I could get haircuts. We were way overdue and since Abby's confirmation was tonight and I needed one before Toronto, my long-time stylist and friend, Sonia and Abby's stylist, Thwe from Maison Noi treated us. We looked and felt great (which is saying a lot right now!) and hit so many nice compliments on our hair today!

Also this afternoon, while the boys were having a good day in hospital with lots of playtime despite Ollie needing another blood transfusion, Abby and I had a fun afternoon of manicures and pedicures with dear friends Julie, Jenna add Mackenzie. 

Tonight Abby had her confirmation. In the Catholic Church, this is an important rite of passage where kids become real needs of the Church because they choose to be versus simply because their parents want them to be there. As I've mentioned before, Abby has really embraced her faith this year, maybe in part because of everything happening to her brother. 

In my darkest moments my faith has been such a comfort to me and reminds me that I am loved and can get through anything with God's help. I can't imagine trying to get through this without faith in a higher power. 

I was also so happy to sponsor Abby's friend Ines for confirmation. Bishop Prendergast was saying tonight that when we teach youth our faith, we by extension are practicing and even strengthening ours. I am thankful for Ines (and Cristina and Fernando) as well as Charity, my dear friend, "God sister" and our youth minister for allowing me to help them with confirmation this year before Ollie's diagnosis. While I am sad that I missed some of our Alpha parent prep sessions as a facilitator due to our situation, I am so happy to have had the opportunity to deepen my faith with other parents in our community.

We also have big love for Julie who agreed to be Abby's sponsor since her godmother Gladys is living in California and could not be here. Julie has always loved my kids so much and is always there for them no matter what. This mama is proud to have her in our village.

So that was our busy weekend so far! 

Tomorrow morning at 9 am, Ollie had his next lumbar puncture with intrathecal chemo, so I'll be back to CHEO early. Wishing you all a blessed and restful Sunday!