thirty eight.

When Jaxon finished treatment for Acute Lymphoblastic Leukemia on June 11, 2017 - he had been on chemo for 38 months (3.17 years, 165.47 weeks, 1158 days). 

As of 6:00 this evening, he has been off chemo (and the wretched steroids) for as long as he was on! This feels like a really big deal. 

He's been off treatment for just over 3 years.

His most recent check-up in June happened virtually due to Covid-19, and his blood counts were perfectly within normal range. That was the last of his quarterly check-ups. Next one is in December. He'll have check-ups every six months until June 2022, which will take us to 5 years off treatment which is a REALLY big deal in the childhood cancer experience. From there he'll have check-ups once a year until he's old enough to make his own medical decisions. 

We are grateful.

counting down

APRIL 4, 2017

May 24, 2017

MAY 29, 2017

JUNE 5, 2017

last DEX dose

WE'RE SO HAPPY TO BE DONE WITH DEX!

May 29, 2017 @ 9:55am

For the first few months, Jaxon's dexamethasone was given as an oral liquid. Later on we switched to pills because the volume of the liquid he had to take in (med plus flavour to mask the taste) became unbearable for him (and me - the one making him do it). The pills were really tiny and he said they didn't taste like much of anything. As he wasn't able to swallow pills, we had to get creative. We started cutting a slit in jelly beans and giving them that way (with a chaser bean), but eventually switched to Swedish Berries. They were a much softer vessel, (straight, no chaser). Pic below shows how I would prepare the 5 days of double doses. 



First dose was always taken the evening of his clinic appointment, 2 daily doses for 4 days, then final dose the morning of Day 6. 

Dosage for Dex varied through the first few months of treatment according to protocol, and increased gradually through long-term maintenance according to his BSA (body surface area).

3mg/m2 daily for the first 4 weeks. (April 12 - May 7, 2014) 
(Don't recall the actual dose he had.)

7.5mg total daily (in 2 doses) August 8-14/14
7.75mg total daily (in 2) August 25-31/14

5mg total daily x 5 days monthly Dec/14-Aug/15
5.25mg total daily x 5 days monthly Sep-Oct/15
5.5mg total daily x 5 days monthly Nov/15-Apr/16
5.75mg total daily x 5 days monthly May-Jul/16
6mg total daily x 5 days monthly Aug/16-Jan/17
6.25mg total daily x 5 days monthly Feb-Apr/17
6.5mg total daily x 5 days monthly May-June 2017
and no more!

I've posted before about how troublesome steroids are for kids in treatment. No joke. The stuff is horrid.

Day 720

I forgot to add his ANC in the top right screenshot - it was 2.5.

Day 720 of Jaxon's recovery from Acute Lymphoblastic Leukemia. Almost 2 years into this ordeal, I'm still surprised to learn that some people think he's all done and finished his treatments. Not so! He continues with a cocktail of daily, weekly, monthly and every-three-months chemo administrations (oral, IV, spinal) as well as steroids for 5 days each month (plus several days of steroid hang-over). Every month his blood counts are checked to make sure the ALL remains in remission, and to make sure he is receiving the right dosages of chemo. This month his white blood count is a bit higher than preferred, but we suspect that is because he has some symptoms of a viral illness. If he has no cold symptoms and high counts again next month, his chemo dose will likely increase. If all continues to go according to plan, the anticipated end of treatment is mid-June 2017.

Let's try this again.

Tomorrow is attempt #2 for starting the second half of DI. Day 29 can only happen when ANC and platelets reach .75 and 75, respectively. Last Monday he was too low at only .30 ANC. It was to be expected as the DOXO can stay in his system for 3-4 weeks. 

The chemo vacation was really nice. He's just now coming out of the steroid hangover, two weeks after his last dose. His mood is stabilizing and he's making reasonable, though still frequent, food requests. This round of steroids also brought a new side effect - the giggles! Uncontrollable and contagious. Even a bit irritating to a particular brother 2.5 years older than him. It's been pretty funny, and a nice break from the constant crabby-cakes. He was still plenty mean, nasty and unreasonable at times of this last round but the breaks of glee were really nice. I'll post a video later of some recent brotherly hilarity. 

I gave him a buzz cut last night, likely the last one for a loooong time. His hair has shed much more than it did during the first few months. It will all be gone soon. He was getting itchy often from the hair falling out and in a fleeting moment of willingness, he agreed to a cut. Hopefully now we can finally get rid of the cradle cap he's had all his life. 

We are now at Jeneece Place in Victoria, ready for tomorrow's appointment for blood work, hoping chemo this week is a go. If it is, he'll have an LP (IT-MTX) and then IV-ARAC tomorrow, then 3 days of IV-ARAC. 3 days OFF then back to Vic for another 4 straight days of IV-ARAC.