Courageous Counting

While this is a photo of the Sick Kids Hospital Atrium at night from the 8th Floor Family Kitchen in the Bone Marrow Transplant Unit, during the day this space is buzzing and coming up again. Clinics are open, surgeries are happening again and the Atrium is quite busy on weekdays. Unfortunately even here people are oblivious to the need to social distance and many times I've had to ninja around people blocking the path to the doors, elevators, etc. 

My little lymphoma ninja has still not been feeling great these past few days. Still having challenges with nausea, vomiting and diarrhea, although they've played with his meds and reduced all of those symptoms. 

He's had some petechiae (round spots that appear on the skin due to bleeding and often indicate platelets are low), but has not needed more plasma. 

His eyes have been bugging him because they're dry from radiation and his eyelashes have fallen out this time from chemo. Many panics from having eyelashes on his eyeball!

We got him his own ukelele and he's been happily picking away at it.

The Sick Kids clown, A. Leboo has been coming by each week to Beyblade.  I saw him coming into the hospital the other day in his regular clothes and almost didn't recognize him! 

Ollie's face and lips were swollen for a few days from water retention. That's easily fixed with Lasix that they give him in his line to have him pee out the extra fluid. Fluid intake and outtake are closely measured and his weight is taken daily to ensure he doesn't have any fluid imbalance.

He's wanted to snuggle more because he feels so rotten. We keep telling him you have to feel worse to feel better and he's almost there. It's Day +19 today and he's felt rotten most of those days. He's also been more emotional the last few days, having crying episodes over things that normally wouldn't phase him. We're in.the home stretch to feeling better and it's hard to hold it together sometimes, so you just have to let it all out to move on.

He's also had intermittent low grade fevers the last few days. It's freaky because this is also a normal and good sign of grafting, but before now anytime a cancer patient got fever it was considered bad and a sign of infection. They still take blood cultures each time he's feverish just to be sure it's not bacteria or infection, but he's on anti-virals, anti-fungis and immuno-suppressants to keep him from getting sick and rejecting the new stem cells. No sign of Graft Versus Host Disease, either.

Our 13th wedding anniversary was Wednesday. We saw each other for about 25 minutes during our tagging in/out transition in hospital. I got back to the condo and there were some flowers and chocolate as well as cards from Mario and the kids. They can't be brought to the hospital given the risk of fungi so I enjoyed them for a few hours at the condo. I had sent Mario pies. Romance, cancer style. LOL

Music therapy started well this week with Ollie playing guitar, but when he tried to sing, his voice was too hoarse from the mucusitus and he got upset and gave up. 

Toni and I finished the session with his favorite songs, but he was not consoled.

Yesterday Ollie said to me that he wanted to change his Make A Wish (he has chosen to wait until COVID is over to go on a trip to Atlantis Bahamas to swim with the dolphins) to instead give the money they would have spent in the trip to CHEO so that they could get their own Bone Marrow and Stem Cell Transplant Unit so that kids like him wouldn't have to wait for transplants and wouldn't have to move so far from home to get the transplant. He knows we have to stay nearby for at least a month after he does get out of Sick Kids and wishes we could be home instead. So his solution is to make it better and fairer for other kids. 💗

I had to explain that is a beautiful idea and I will absolutely talk to CHEO and everyone necessary to make this happen, but it might take a little while to raise the millions of dollars needed to do this. I LOVE his gigantic heart and belief that everything is possible. I tweeted Alex Munter at CHEO and Make A Wish about this yesterday. Alex was lovely and said to let him know when we're back in Ottawa so we can get together and talk about it. We're going to find a way to get Ollie this wish, even if it takes me years to make it happen. 

I'm also working on a plan with some other moms internationally to raise greater awareness of pediatric Anaplastic Large Cell Lymphoma (ALCL), but I'll share more on that as things solidify. 

Now for some really positive news...his blood counts are going up! On Monday he was only 0.03 for his white blood cell count. This is normally expressed multiplied by 1,000, so his count would really be 300. Your average WBC would be between 4,000 and 11,000 per micrometer of blood. Every day since then it has doubled or better despite the fact that we were tools they may fluctuate up and down at first. Tuesday he was 0.05, Wednesday he was 0.08, Thursday he was 0.26, Friday he was 0.54 and today he is 1.09! 

This means he's starting to have neutrophils and infection fighting ability and MOST IMPORTANTLY it means his new immune system from his amazing sister is starting to work!!! Praise God! 

He's not vomited at all since yesterday afternoon now and this is another sign that the WBC are healing his body. 

It's early days and makes Mario nervous to get too excited about it, but the doctors are really pleased and are talking about moving him out of his isolation room into a regular one in the next few days. I am so relieved and filled with love for everyone and everything right now that I feel like I must be emitting beams of light from my body!

He's sleepy today, but has more energy when he is awake. He's happy, but emotional. I can totally relate, but poor Mario looks at us both like we're complete aliens. LOL

He is really missing Abby. He was emotional when I left the hospital this morning, so I stayed longer to hold him and let him cry. He was upset that Daddy was nervous about him moving to a new room too soon and got mad at his father because he felt Daddy didn't want him to come home as soon as possible. He cried that he really misses his sister and needs to see her sooner and doesn't want her to go back to Ottawa without us. Then he felt bad that he was keeping me there and insisted I go to be with her so she wouldn't be sad, too!

She misses him, too, but is focused on getting ready to go back to school. My dearest friend came to Toronto this week and took her back to school shopping, being as careful as possible to keep her safe. Abby had a blast and got to feel normal for a bit. I don't know what I'd do without selfless people like Sonya and so many of you who have stepped up to help me anytime and with anything we've needed.

It's been a really hard decision for us to send her to school and it's still not 100% made, but it looks like we're going to send her back to Ottawa to stay with dear friends for at least a month until we can come home. If we have to stay in Toronto longer, we'll reevaluate and possibly have fault go up to Ottawa to stay with her, or have Mario go home to be with her and family come to Toronto to help me. I am still hopeful that the path continues to be clear and simple for him so that we can just go home sooner and all be together again.

They've generously offered to have her and we know they'll love her and care for her like their own, but man is it ever hard to let her go. She's staying middle school and I'm consoled at least by the idea that the school is only grades 7 and 8 and not with other elementary nor with high school students who can more easily transmit viruses including COVID.

She desperately needs to get back to normal and routine for her own mental health after three months of COVID and 10 months of cancer turning her life upside down. It's really an impossible choice, but her social worker and psychologists feel despite the risk it would be best for her. So we will embark upon yet another stressful experiment in our life, hopeful that her fear and common sense will keep her distant and safe as much as is possible.

We'll have to figure out how we manage the risk to Ollie when we get home as its not just COVID we have to worry about, but all viruses, bacteria and diseases since all of his immunities and antibodies have been wiped out with the transplant and he'll need to gradually get all of his vaccinations again when it's safe to get them.

So we're all emotional, but good right now. Your prayers are working, so please keep them coming as we're not home, yet but can't wait to be!

T Minus 6 days

It's the first R-day and it's now T minus 6 days to transplant. Last night Ollie actually slept all night, for 14 hours (we've finally figured out what's happening with his sleep, but more on that later) so he was in a great mood this morning and ready to tackle radiation. 

I've been so afraid that he'd relapse again before we got to this point and have been emotional and filled with gratitude for everyone who and everything that got us to this point. 

We were met at Princess Margaret Hospital by Susan, the Sick Kids radiation coordinator. She's been doing this job for 32 years and honestly knows everything about how to get kids through radiation. Last time we didn't get to meet her because she was on vacation when we were there for the original radiation planning. Today she told me how pleasantly surprised she was when we made it back after relapse. Another indication of how rare it is to get a second chance at this.

She is the perfect blend of sweet and tough. She knew exactly when to encourage Ollie and when to be tough with him to get him to do what was needed and was a huge help to us today. The team of technicians were also helpful and kind to Ollie. Given he had two sessions today he had two different teams, but Susan was there both times, so it was a long day for her, too.

Ollie was very relaxed in the beginning and very cooperative. The treatment is done in 6 parts. Three on his back (head, torso and legs) and same on his front. He easily got through the first 10 minute treatment on his back, but when we went in to shift his bed to do his torso he got upset that it wasn't already completely done!

It took a bit of convincing, but we finally got him to calm down and finish the treatment.

Susan had a radiation chart and puffy superhero stickers (so that he could feel them since he can't see them) for Ollie to mark off each of his sessions.

 

After the morning session we walked back over to Sick Kids to be checked out by the Bone Marrow Transplant Unit's Nurse Practitioner. She was happy that Ollie's vital signs were fine and he was feeling okay. She said because of this and the fact that we are living only a block away, after he had his dressing changed we could go back to the condo until we needed to go back to Princess Margaret for his 3:30 pm session.

He was not happy about the dressing change...

...but as usual he got the hard thing done and we went to our home away from home...

...where we snuggled and rested all afternoon.

At 3 pm Mario drove us back at Ollie's request because he was pretty tired.

During the afternoon session they had to do some quality control, so they taped some little ziploc bags with microchips on them to his chest and later his back. These will apparently measure the dose the machine is giving him to ensure he gets the correct amount. He was not thrilled about taking the tape off, but it comforted me that they're doing QA.

He slept through the first three scans on his back this afternoon, but wasn't happy when we had to wake him to flip him to do his back. After convincing him to just do it and go back to sleep, he finished the last three, sleeping again. 

Daddy and Abby picked us up (it was already after 5 pm!) and we got home to find a package with the next book in The Dragon Masters series that generous friend Jennifer sent to him! So we read two books and snuggled some more. 

Daddy also finally agreed to shave his overgrown cancer/COVID-19 beard (which the kids and I have crowned, the "Bacteria Beard" given how often it catches food! Ewwwww!) for Ollie because he was a radiation champ  and has been asking him to shave it. 

This made us all happy! 🎉

Tonight he was feeling a bit nauseous so he's taken meds and slept. 

We did find out today that he is suffering from Somnolence syndrome. It's a side effect of his earlier brain radiation, making him super tired and not at all hungry. Susan the radiation coordinator helped us to figure it out today and said she'd inform the BMT team that this is what Ollie is experiencing.

So our strong-willed, brave, determined, warrior has made us proud, yet again. Although all of this often makes me the mean mom who forces him to do all of the hard cancer things and he gets mad at me, he is always quick to calm and apologize for his anger. At the end he always just wants a hug and to snuggle with his mama to know he's loved and all will be okay in his world soon. 

Saturday Sickness and Snuggles

Ollie still wasn't feeling great Saturday morning and the doctors tried a number of drugs to get rid of the nausea.

Finally we seemed to have found a magic combination with an anti-nausea patch called Scopolamine and an oral drug (which at first he fought taking) called Sucralfate. For the rest of the afternoon and evening he felt much better, although still a bit scared of "risking" eating anything significant for fear that he'd throw it up.

He even felt well enough to practice his physio with Mario to regain his strength and balance after a month mainly in bed.

His French teacher sent him some cool Brain teaser puzzles and Magformers which he enjoyed puzzling out with his hands. Amazing what he can do without his eyes. Always knew he was clever, but never imagined how quickly he'd adapt and overcome a challenge so big.

Abby came for the day but was upset at how sick he's been this week. Eventually as he slept she and I went to Trainyards for retail therapy and time together, talking and new Barbies changed her outlook. This cancer battle brought to you by Mattel!

Sometimes it's just all too much for Ollie and he gets combative. Daddy was able to calm him this afternoon with hugs and snuggles.

When he felt better and the, rest of our foursome went home, we got out the new Magformers friends and his teacher had bought and he built structures.

Then we sent Daddy Ave Abby crazy texts...

They sent one back...No idea who the porky is in the middle...

Ollie slept much better and more overnight as did Mommy.

Love sick for Valentine's Day

Imagine one nurse trying to get blood out of your central line in one arm while another gives you a poke in the other to get blood cultures done. Doesn't sound pleasant to any of us, does it? That's what my boy was up to today. And he was calm and cooperative while everything was happening. 

Specifically he was up to a fever of 38.8 as a result of a self-inflicted scratch on his belly button when he was agitated earlier this week. The fever meant he had to have blood cultures which can't be taken out of his PICC. 

As if that wasn't enough to make his day difficult his post-chemo gifts that kept on giving were heartburn, major nausea and vomiting. Normally in the three days post-chemo we can manage this at home with Ondanzatron (called the Tony Danza medicine by Daddy and Ollie) and Gravol. This time after a much harsher dose of chemo those were not enough and no combination of meds, deep breathing, ice chips, soda crackers, bread, etc. could change things for him today.

Abby was here this morning to chat with the social worker, so ask for of us were together for a few minutes this morning. The sum total of our Valentine's Day together. We rarely do anything romantic and usually enjoy chocolate and little gifts with the kids. So we did it with even less fanfare this year.

While waiting, she had to see Ollie throwing up and at one point leave the room so she didn't get sick herself. This is not easy stuff for anyone to stomach. She was picked up by friends after and went on to have a great fun filled day of sledding for her PD Day and youth group tonight, so her day got better at least.

Also while throwing up today, Ollie's NG feeding tube came up his throat and out his mouth. Scary moment for me and thankfully the incredible nurse Megan (honestly my fave hands down) was calm and quick, telling Ollie she had to rip off the tape on his face quickly and take the tube out. 

So you'll note the photos show Ollie without it. On the one hand he and I were happy it was out, but on the other, Ollie was stressed about having to take more of the meds orally. Fortunately Megan rearranged his pharmacy orders to put anything possible in IV form and anything else in tablet to avoid the gagging from tasting the meds. 

I had a good long chat with my brother, Cory today. I know it's hard because when your family lives so far away (he's in BC) they don't know what to do or say to help you. I told him just keep checking in and talking to me and being as normal as he can be with me. That I'll always take his call if I can and love him for wanting to know what's happening with us, so he's not bugging when he checks in. You don't have a lot of down time to talk or a lot of energy top talk when you do have time. But you still want connection with your family and dearest friends during hard times like this.

This afternoon, Ollie requested a special but short visit from Mackenzie (who is a teenager) who came with her parents Aunt Jenna and Uncle Vic. We know it wasn't an easy visit because he wasn't feeling well and seemed sicker than he normally is, but Mackenzie handled it with grace and compassion and we love her for dropping everything to come and be there for him.

He's now sleeping and I'm hopeful this will continue. 

Hope your Valentine's Day didn't leave you love sick and you enjoyed those that you love, romantic or otherwise.

Better get to bed and get whatever sleep I can. Night John-boy! ;-)

Nausea, fatigue and food

The last two nights weren't great. Ollie has had constant nausea and barely slept. Which means Daddy didn't two nights ago and Mommy didn't last night. So we are very tired today. More nausea all day today. The regular medicine we use during chemo that helps can't be used this time around because of the heart rate and breathing issues he was having in ICU which they don't want to recur.

We also think the formula they're giving him in his feeding tube while they have been restarting him on food after he had nothing but fluids for 12 days has been making him ill while he sleeps. So today they changed his food to something with ACTUAL food in it. 

It made me think of when Abby was a baby and the pediatrician thought I should supplement my breastfeeding with formula for the first while as she wasn't getting enough. Abby hated every one of them. Mario found a YouTube video where a dad did a taste test of baby formula. Mario thought this a great plan and set out to test each one we tried with Abby. The end result was he swore they all tasted like cardboard and she wouldn't take any, so we found other ways to increase my milk and I went on to breastfeed both kids exclusively. Maybe Ollie's body like Abby's is rejecting them knowing that's not the good stuff.

So we are focusing on eating real stuff. This has been harder today because of a loose tooth. He had two loose teeth, yet it seems he somehow lost one undetected when we were in ICU. So now he's pulled out the other one. Before doing so we checked that his platelets and Neutrophils were high enough to so that he wouldn't bleed excessively or be prone to infection. What a world we now live in that we have to check these things before wiggling out a baby tooth.

Also today his blood tests showed that his sodium was a bit low again and given they don't want him to have the same problem as in ICU they are now having to limit his fluid intake again. 

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) is a condition in which the body makes too much antidiuretic hormone (ADH). This hormone helps the kidneys control the amount of water your body loses through the urine. SIADH causes the body to retain too much water. It can also cause seizures and stroke-like symptoms as we saw first hand last week in ICU. By reducing the fluid, the concentration of sodium is better in the urine because there is less urine to dilute. Today the Endocrinologist who discussed this with me asked if I worked in the medical field when she asked what I knew about it and I explained that this is what I learned from our stint in ICU. Thankfully my brain is able to retain bits of information and connect dots between related things. 

Tomorrow he'll have another lumbar puncture (LP) with inter-thecal chemo in his spine. A few more LPs and we should be done that part at least and maybe even get the miracle we are praying for to get his sight back, too.

As a side note we have met a couple of new families here and tried to help them where we could. One is a week in to their leukemia diagnosis with their 13-year old and noted one day in the kitchenette that they should bring food to the hospital because everyone they know wants to bring some, but they just don't know how to get organized. I shared our meal train web site with them so they could have their family set up a similar one for them, too. Another lovely family is from North Bay and have a baby boy (under 6 months) with leukemia and a four year old daughter. The dad has been driving back and forth 20 hours each weekend with their daughter. The mama and baby have been here continuously since December 26. She told me she's just recently come out of the shock of it all and started to talk about it. They have no family or friends here, either.  So we're sharing the plentiful and delicious food that folks have brought us with this beautiful little family because we often can't eat it all and our freezer is not big enough to hold more. So many of you are nurturing us and we know you won't mind if we share some of your love and support with them and their little M (who has already stolen our hearts). It reminds us again of how blessed we are despite everything to have all of you helping us and also made me think of my grandma who always said if you can help someone you should.

Even bad days can be blessings...

This guy didn't feel great today and spent a lot of time in bed. The smell of the meds were making him nauseous, so he chose to wear a mask.

Yesterday was good. Ollie was full of energy, played hockey, had a good first lesson with his new teacher, and an online video chat with his class at St. G.

Playing hockey with Dr. Chancy

First lesson with Reg with some reading and math. Only 40 minutes a day to keep up with his class.

Mario came at dinner and stayed the night with Ollie while I went home to be with Abby. It's hard being away from Ollie because as much as I know he's in good hands, I feel like I did when he was breastfeeding and I needed to be close in case he needed me. Neither of my babies were good bottle takers, so I was rarely away from them for more than a few hours when they were infants. 

Being home with Abby was a joy, although tough too because I had to get things ready to go back, so my time with her is never without some obligation. Ironically my time at the hospital is more focused because I don't have to plan beyond the next hour, don't need to worry about laundry, or emptying the dishwasher or any other thing than getting my son well. So Abby helped me do laundry and empty the dishwasher and we snuggled and watched tv together. So many of you have reached out to spend time with her, take her to special events, sent her special gifts and shown her extra love and I am so very grateful for your help in mothering her through this.

Coming back to the hospital was difficult because I want to be with my boy, but hate leaving her and Mario and I are like two ships passing. Several of you have kindly offered to be with the kids to give us a break, but when you're in this, especially at the beginning of chemo you need to be with them. Mario and I have always been united in our belief that we can make time for us, even with the kids around. Thankfully we had a good date night out without them the weekend before Ollie's diagnosis was confirmed. 

Today was harder. Ollie was tired and listless all morning and didn't want to leave his room. He had his second lesson, but was tired. He started feeling nauseous around lunch so they have him Gravol and he slept all afternoon. Watching him I felt like this is what I expected the last 7 days to be like and maybe his real chemo has begun...his doctors and social worker say it's possibly just a bad day and not to worry about it. By dinner he was begging me to order him Gabriel's pizza (how could I not?!), ate 2.5 pieces and made a new friend.

I had noticed a boy closer to Ollie' s age on the floor earlier and suggested to Ollie maybe he'd like to play hockey. We found him, he's 9 and was glad to play. He has leukemia and has been on his journey for 18 months so far with about the same amount of time to go. He talked candidly to Ollie about losing his hair, how it grew back, how he'd now had 3 infections and had to come back for a few days (exactly why they're not allowed to go to school or be around a lot of little friends during chemo) each time, how he was glad he could finally go back to school and hockey this year and how you get used to all of it in no time. I was so grateful for young N' s help today in normalizing things for Ollie. They could relate to each other and Ollie could understand that he'll get through this and his 8 months by comparison, is so short. 

So we have an aggressive form of lymphoma that responds super well and fast to treatment (the bump is already so much smaller) and has a high success rate. In a crazy way we were also blessed in the type of cancer that he got. We won the cancer lottery! 😜  Sorry...bad dark cancer humour...

We also had a special unexpected visit from extended family tonight that meant the world to me, too and lifted our spirits. So the day that started bad ended way better than expected.