Fortitude and Double Digits

The last few days have been a bit harder for Ollie, but as usual he's faced them head on and come out the other side. 

Although nausea, vomiting and diarrhea are not uncommon during this part of the post-transplant process, his has been a bit more persistent than most. The nausea and vomiting are mainly from the mucusitus that he has once again from chemo. Thankfully the painful sores in his mouth have been limited to just one so far, but they can be present anywhere in your gastro-intestinal tract and they suspect he has more given the frequency of throwing up and bowel movements over the last 3 days. 

We are also pretty certain that the diarrhea is mainly due to the antibiotics, although there is a small chance that they've given him a c difficile infection. As a result they held one of the antibiotics yesterday and sent a sample to the lab to rule out c difficile or any other infection. Today he's gone only twice versus every half hour, so we're moving in the right direction. 

They're also helping him to stay more comfortable on anti-nausea meds (Ondanzatron or a cousin of it, Navalone, Gravol and Atavan) round the clock. That works most of the time. When it doesn't, Ollie bears down and deals with the challenge and minutes later is ready to move on to something more entertaining. Tuesday he was making slime with the Child Life Specialist.

Later that day he got his first Intravenous Immunoglobulin (IVIg)
 transfusion. Essentially when you donate blood you're also donating immunoglobulin which is part of your blood's plasma. It can be separated out and then given to immuno-compromised people like Ollie to help strengthen their immune system and fight infections. He'll get this at least once a month for the next handful or more of months while his new immune system is being established and given he'll have no antibodies or immunities to anything since those are all wiped out for transplant. 

Once again I owe an immeasurable debt of gratitude to perfect and generous strangers who are saving my precious son's life simply by taking an hour out of their busy schedules and giving a pint/half litre of their blood. It really is "in you to give."

Last week we were also contacted by the Phoebe Rose Rocks Foundation who had seen my tweets about the blog and Ollie's stem cell transplant and told us they'd like to send us something to help. Phoebe Rose was a brave leukemia warrior who had a rare cancer and had to move away multiple times to seek cancer treatment, including a bone marrow transplant. After she passed at 5 years of age her family started the foundation to help families like ours with expenses related to having to travel far from home to seek treatment. 

They sent us a generous package of gift cards with a beautiful note of hope and also told us that they love the Ollie Pizza! So this is yet another worthy and kind organization helping families like ours through unthinkable challenges related to cancer and one worthy of your consideration for your annual charitable donations.

Yesterday Ollie was thrilled to have music therapy. He had just been throwing up mucus minutes before the session started, yet was adamant he was okay to go ahead with it. Toni is a full time music therapist at Sick Kids Hospital. Based on what I saw, she's worth every penny they pay her and EVERY hospital should have music therapists! 

She asked what kind of music experience we had and was happy to learn that I used to play piano and French horn, Abby and Ollie were taking piano lessons and Abby had done a year of guitar and Ollie tried a music camp where he played the drums. 

She brought a cart piled high with interesting and somewhat exotic instruments. Each one was lovingly wiped down before bringing them in. Ollie couldn't wait to feel what she brought. I was pretty excited to see them all, too. A ukulele, a xylophone, bongo drums, a tamboa, an ocean drum, maracas, and a guitar were lovingly tried by Ollie. We each got to pick an instrument and Ollie lead off with a rhythm and we just tried to add to it with our chosen instruments. 

We actually sounded pretty good! At one point Ollie had me play a few songs from his play list and we tried to accompany it. 

I was so pleased with how things went and thanked her profusely at the end. Ollie had told her all about his Bye Bye Lymphoma playlist and how it got him through hard things like radiation. She told me he's exactly the kind of kid that she started doing this for and she wished there were more parents who understood how therapeutic music was and how it could transform mood, energy and overall mental health for patients like Ollie. 

She seemed surprised that CHEO didn't offer this therapy, but I am pretty certain they don't and will be encouraging them to consider adding this. For once something that Sick Kids does better than CHEO! 😜

Ollie adores singing and always sings along when he plays piano, so these instruments were no exception either. Toni was thrilled with how he loved to sing and with how enthusiastic he was. Next week she's going to bring her guitar back and be prepared to play some of his favourites for her to accompany his singing.

Meanwhile, Abby is busy building an empire for her Barbies! 😀 She's been planning and crafting rooms and furniture for the Barbies as an art summer project. 

I love how she plans everything out to the tiniest detail and enlists Daddy's help when she needs help with the furniture manufacturing. He loves projects like this, too. 

She's doing well, but eager to get back to school and her regularly scheduled life. She and Mario had an online session with the psychology team this week and she's also scheduled a chat online tomorrow with the Child Life Specialist dedicated to helping with siblings of transplant patients.

She and I are enjoying our time together every day when Mario goes up to visit with Ollie. It's so much better than previous times we've been in hospital when we didn't get to see both kids each day. 

Today Ollie had an ECG to verify that the medications and transplant haven't affected his heart. 

Ollie loves to be silly when the nurse practitioner and doctor come to see him on rounds. They are pleased with his progress, his overall attitude and his energy level. 

While Ollie napped today, the Fred the Chaplain stopped by for a visit. He had come by last week to introduce himself and offer the support of spiritual services. This was part of the follow up from our meeting with the Pediatric Advanced Care team last week as well. Fred is a kind man who practices the Christian faith, but is also well-versed in mindfulness. We have had interesting discussions about faith and how it has shaped our path to wellness to-date. 

A. Leboo (one of the Sick Kids Hospital clowns)  came again today, toting his Beyblades! He told Ollie he had taken them apart to sanitize them, but didn't know how they went back together! Ollie was up to the task and spent time schooling him on right versus left spinning Beys as well as what the different tips did and what types of Beyblades each was. It was another great distraction for him. At no time so far has Ollie told me he's bored or tired of being in the room. With Day +10 under our belts we're in the double digits now and should start to see his counts start increasing in a few days between week 2 and 3 to show Abby's stem cells have grafted. 

Today Ollie's isolation teenage neighbour got out of his room after transplant and you could see the joyous look of freedom on his face. I can't wait to see that in Ollie's face!