The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Thursday 1 October 2020

Blessedly easy


Wow! A week has flown by and I haven't written anything! I missed it! 

Last Thursday Ollie had his surgery to remove the PICC (central) line. Everything went well, but it was surreal to be back there. This is where Ollie had his biopsy last November 11th (giving new meaning to Remembrance Day for us forever). Same exam room, same lovely and kind nurse, Bonnie (who could hardly believe it's been almost a year!), same anesthesiologist. Ollie took it all into stride and I was the one who had to do deep breathing to keep my (assumed) PTSD under control. 
They put Emla cream on each of his hands so that when he was asleep and they put the IV in it wouldn't hurt and his veins would be more open.


We were in a closed isolation room while waiting to go into surgery for "preventative isolation" since he's now post stem cell transplant. He actually slept for the last hour before surgery and refused the extra calming drugs before going into the OR since he told them he was already calm and sleepy. 


Surgery itself was quick and easy. Less than 20 minutes after a 2.5 hour wait to get in. Only little glitch was they called me into recovery when he was awake, but he was in the regular big common recovery room and I had to remind them that he was post transplant and preventative isolation, so they quickly moved him back to his isolation room. As was his usual practice, he immediately ate (he told me what to pack so we had our own food, although CHEO always allows you to order off their menu in recovery). Without the Dexamethasone now, waking up from surgery he is WAY more pleasant!


Within an hour of coming out of surgery, we went home and he ate some more. Easy peasy surgery. No post surgery pain meds needed, either. Within 48 hours he was great and excited to have his first relaxing bath in almost a year. He played with boats and didn't want to get out. A far cry from the regular crying and stressing every time where it took Mario and I to get him washed and out as quickly as possible. I've had so many showers assisting in my bathing suit this year!


Ollie got this cool new MP3-like device as well as a few other donations like a Braille watch and other assistive devices for visually impaired people from his Braille teacher, Leona. It allows him independently to listen to books and written documents read aloud to him. We're still learning with the IPad which is harder because it doesn't have raised buttons.


Chewbacca is clearly missing old Minou and is Ollie's regular hang out buddy now.

Friday night NERF war games happened and Ollie was thrilled!
On Sunday, unfortunately his eye was very swollen and red. Fortunately no fever, though. I called the oncologist on call to decide what to do. Thankfully our nurse practitioner, Terri was also on call this weekend and between the two, they decided that it could wait until the next morning when we were going in for bloodwork anyways. Ice packs on his eye and Tylenol kept the minor pain away until then. 


On Monday morning Ollie told me that he had prayed the night before to ask God to let him be able to take oral antibiotics at home instead of having to be admitted and IF he needed to be admitted he asked God to give him strength to handle it without freaking out. He continues to leave me in awe of his faith despite everything and shows me that God is working with him to get him through everything with his hope and faith intact.

God was listening and we got the oral meds! He also helped Ollie by giving him the strengthto easily get through the poke (needle) for his bloodwork with no fussing or crying at all. He took deep breaths all on his own, held my hand and Manon's (the amazing child life specialist in the Medical Day Unit) and told nurse Carrie just to do it quick. More easy peasy.

Yesterday we resumed physio with his amazing physiotherapist, Alison. I told her after that I was 100% convinced now that he relapsed in April before getting the stem cell transplant because he wasn't strong enough and through Divine intervention we came back home to get stronger to make attempt 2 successful and she had played a huge role in that. I know that he made it through transplant because he was physically, mentally, emotionally and spiritually stronger when we went back in July. 


Today Ollie learned to walk with his first blind cane thanks to assistance from Jennifer at Vision Loss Rehab (Leona works there too and they are incredible). He was super psyched as he knows this will make him more independent and prepares him to be able to have his Canadian National Institute for the Blind (CNIB) Buddy Dog. Speaking of which, Ollie was featured in their newsletter this month! 


Lesson one was all indoors. Next week we'll go outside and learn to use it on the street! Maja, if you're reading this, I'm thinking of you, missing you and so grateful for everything I've learned about blindness from you. 


So that's been our week (beyond melt downs about online schooling bumps). Today I found a heart in my morning bowl of Cheerios. Signs are everywhere and we are grateful for the love in our lives! Hope your week is going well (aside from the US debate last night)!

7 comments:

  1. My heart is full. I'm so happy to hear all the positive things happening and seeing the personal growth in Ollie,(albeit forced upon him!).
    You all deserve that Cheerio heart! Thinking of you....HI OLLIE! Ms. Di

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  2. Happy to hear you guys and Ollie are doing well. Our boys are adjusting to virtual learning as well; with meltdowns and frustration some days...you guys are not alone. You got this!

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  3. Ollie's faith and his straightforward relationship with God are so incredibly inspiring. What a blessed, blessed kid you have there! And Mom, Dad, and Sis are pretty darn great, too. xo

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