Today was a day of disappointments. Ollie was NPO at midnight, so he couldn't eat and was super irritable every time he woke from 5 am on. The steroids didn't help either. The worst part was that they were squeezing his lumbar puncture in today, so we had no idea what time it would happen and had to deal with Ollie's escalating bitterness about the delays.
His last LP he was cool as a cucumber before and after. This time he was angry and sad before and after. His cell numbers were still 3, but they needed to verify if these were actually lymphoma cells or not. The last ones are generally the hardest to kill.
He did get to meet his new CHEO Buddy (a mentoring program much like Big Brothers Big Sisters Ottawa that is great and dear to our hearts), Steve. Steve is a first year Med Student at University of Ottawa who has volunteered for this program to get a feel for spending time with pediatric patients. We thought it would be good for Ollie to have someone to talk to at CHEO who is studying medicine, but won't poke and prod him or make him feel like the patient He and Ollie share a love for Beyblades, and superheroes.
Today they just got to meet, but Ollie was disappointed.that they didn't get a chance to play since he was nauseous and ended up throwing up after his intrathecal chemo. Poor Steve got baptism by fire today with his first pediatric oncology experience, but later followed up with me to make arrangements to see him next week, so obviously not too traumatized.
I had a few meetings with Rehab, Physio, Occupational therapy, palliative care and our oncologist. Nothing really new or changed.
We also had a visit from the social worker who shared that Abby is only a partial match for a stem cell transplant and Mario and I are not good matches. It makes sense since a sibling is the most likely donor and even then only has a 25% chance of getting a good match. Abby and Mario were sad and disappointed, but we all agreed that we are going to find a match on the stem cell registry list and in the meantime will raise awareness of and encourage others to get swabbed.
Unfortunately many of us will not qualify since the ideal donor is 17-35 years of age and male. The rest of us can still give blood and plasma though. For more information, see:
Blood.ca. They'll even send a swab kit directly to your house. Our school's principal has also reached out to volunteer to host a swabbing event to help. So we'll share more info when we know more.
We're not giving up. It's still full speed ahead to get Ollie well, we're just going to need an extra special angel to help with the last part. Please keep the prayers coming.
Lining up prayers to Our Lady, St. Rita, and Fulton Sheen. Archbishop Sheen loved children and I think he is an absolute miracle worker, so I will ask him for special prayers for Ollie. God bless you all, Dawn!
ReplyDeleteLighting good energy candles to sweet Ollie and thinking of you all ever day! Tons of love from us here! Marce, Edu and Luchi
ReplyDeletesending hugs and prayers
ReplyDeleteDawn, hang in there. Both my parents have leukaemia. It is not AT ALL the same as having a sick child, but the twisty, crazy journey looks the same. You must become an "expert" in this crazy new world...all when you are at your worst. It is like trying to navigate in a blizzard with expert precision. Mom became diabetic with the chemo and had a boatload of other complications. Dad's were a little milder, but were quite serious, too.
ReplyDeleteToday was not a bad one, hon. It was a tough one...but we're still going in the right direction. Having been a primary caregiver, I 100% feel your pain. I wish I could show up there right now with your favourite food and a hug (but I have the Flu).
Ollie's Army is very strong and committed out here.
Here is a little update that might cheer you up. In Newfoundland alone, we have Father Jeff saying a special prayer daily; the Presentation Sisters and the Sisters of Mercy have taken up the mantle; 10 prayer groups at St. Kevin's Church are diligent. I give them general updates daily.
There have been prayers said at shrines; I myself, spend at least an hour on very special prayer beads from two different ladies of the strongest faith (now deceased and Ininherited their beads); my son prays twice a day for his friend Ollie; and there are candles lit in Calefornia!
My note to you was meant to be supportive and hopefully make you feel the love we have going for you all.
Take care. Please try to get a little rest.
With powerful Momma love,
Chantelle