RMH & BCCH in December

Most of Jaxon's treatment is done at an outpatient clinic in Victoria, a satellite campus of the BCCH Oncology Program. We are required to pay a visit to The Mother Ship (BCCH) once every six months, and also have to be there for any super duper special parts of his treatment protocol. More about that in another post. And so we went in December. Max and Marty had not yet stayed at the new Ronald McDonald House in Vancouver, so they were very eager to go. I didn't mind taking them, as it was a quick trip with a low-key day in the clinic. It certainly was a lot more work to have the older boys there with me, but I'm glad they got to experience it with me and Jax. It also made things much easier for Paul here at home for me to take the boys as it was during the work week. But next time? I'll try to go with just the wee one.

Heading back to the car after finding some snacks inside the ferry terminal.

Enjoying the view from our complimentary State Room on BC Ferries.
Available to Jaxon anytime he travels, thanks to our super great social workers in Vancouver and Victoria.  I think only the Victoria ferries have state rooms, so that's the route we take. So nice to have space to spread out our stuff (Lego building!) and lay down if needed. Sometimes they even give me the key so we can leave the room to get food or go for a walk. But otherwise we have all we need, even a bathroom! I must remember to take bleach wipes onboard with me next time because it's certainly not any cleaner than the rest of the boat. 

Happy boy to FINALLY be at the new RMH!
Pic taken before I knew that sitting on the slide is a no-no.

RMH Grand Living Room beautifully decorated with fourteen Christmas trees!

One of our favourite clinic nurses sensed that Jax would need a distraction upon entering the procedure room*, so the bubble machine welcomed him for the first time. Good fun while the good sleepy doc snuck some good sleepy milk into Jax's line. I get to stay in the room for his LPs in Victoria, and have several good pictures from previous ones. I plan to post them, with a warning ahead of time for those lightweights who aren't so fond of medical procedure documentation.
*The 30 minutes that Jax spent delaying and trying to avoid getting his port accessed, followed by the hysterics when me and 2 nurses had to just go for it
was a good indication that he was displeased with the goings-on.

He had a visit from physio lady Anne who put him through a whole bunch of tests to check his nerve function in hands, feet, and knees, balance and range of motion on his feet. Vincristine is the medicine that he'll be getting the most of
(has had plenty since the beginning of treatment and will continue monthly through LTM) and it is known to cause neuropathy, to varying degrees.

We soon discovered it was a great day to be at BCCH as the Canucks were there
to visit! Marty and Jax posed with Fin before they chased him down the hall trying to pick a fight with him as he followed the rest of the team upstairs. 

Max's first selfie! Thanks Fin!

My boys were sort of impressed, and were excited enough to pose for a pic with these guys (Daniel Sedin, Weber, Horvat, Higgins). They each got signed postcards from 12 players! We saw our favourite, Dan Hamhuis, and Jax was friendlier to him this time than when we met him and his wife Sarah at BCCH in May.

Our friend Marek!

We met Marek and his parents in the early days following Jaxon's diagnosis. He has the same diagnosis as Jax, received one day apart. They live in Whitehorse where there is no oncology facility nearby. He and his Mom have been living in Vancouver since April, and are eager to head home in the coming weeks. They will fly to Vancouver for the remainder of his monthly treatments. We're so glad that they were still there when we made the trip over to begin LTM. This time he and Jax were in the clinic at the same time, recovering from their LPs in rooms side by side. He is 3, with the same light brown hair and dark brown eyes as Jax. They look like brothers! Super special friends. He cried when it was time to say goodbye. Feeling thankful that he'll soon be home to rough-house with his own big brothers and sister.

This pic taken after I knew it was a no-no to sit on the slide, but just so cute!

Hard to get a good pic of that boy - always on the move!

Me and Marek's mama, Amanda. I'm so very grateful to have a friend alongside me in this marathon who is going through so much of the same things. Every cancer story is different from all the others, but there are so many commonalities as well. Love you, Lady. Thanks for the socks.

We received free admission via RMH to see the Festival of Lights at
VanDusen Gardens.  So many lights! It was hard to take pics of the boys
with the poor lighting and they ran the whole time.  (Looks like I should have looked at the website before we went so we could have seen some of the extra indoor activities. SCANDINAVIAN GNOMES! Lego Room of Joy! Shadow puppet show!) It was lovely, and great fun to make some memories with Marek and his Mum (and Grandma!) outside of the hospital and RMH.

The Long Haul (LTM)

On December 11, Jaxon began Day 1 of Long-Term Maintenance (LTM) at BCCH in Vancouver. I haven't written much about this phase leading up to it for a few reasons. One reason is that the treatment plan up until then was really super complicated, and the other is that there were further confusing details surrounding the Long-Term portion of his treatment.
(Plus, it just seemed so far away!)

"Frontline" treatment for Average Risk Acute Lymphoblastic Leukemia ...
Induction (4 weeks) 
Consolidation (4 weeks)
Interim Maintenance 1 (IM1 - 8 weeks)
Delayed Intensification (DI - 8 weeks)
Interim Maintenance 2 (IM2 - 8 weeks)

Hard to believe that we made it through all that with very little delays, setbacks or complications. We are so grateful for that, knowing that things could have gone very differently.

December 11, 2014 - Day 1 of an 85-day cycle to be repeated approximately 10 times, until spring/summer 2017, about 30 months. (30 months because he's a boy. Girls get one year less LTM because they don't have test!cles. Having test!cles makes boys susceptible to a relapse of the Leukemia so they get chemo for a longer time to make sure every last abnormal cell is eradicated.) 

He's had 37 weeks of treatment since diagnosis on April 10. Granted, those 37 weeks were considerably more intensive than these next 30 months are anticipated to be. We hope and pray that as much of that as possible will be uneventful cancer-butt-kicking. There are absolutely no guarantees that it's now smooth sailing. We must remain vigilant to protect him from "every day" illnesses, no matter how seemingly insignificant as they can lead to a multitude of the aforementioned (and thankfully avoided thus far) delays, setbacks, and complications. Until the end of his treatment, if he spikes a fever, he needs IV antibiotics within 30 minutes, as he could very rapidly crash into septic shock. That's why we are cautiously selective when it comes to social interactions and why we ask you to consider the ways you can help reduce the spread of illness. (Flu shot, anyone?)

Here's the rundown for LTM ...

• Daily oral chemo at home (for NINE HUNDRED DAYS, give or take a few)
(Mercaptopurine aka 6MP: 50mg M-Th and 75mg Fri-Sun)

• 3 days weekly antibiotics to help prevent PCP Pneumonia
(Septra: 40mg twice daily for 3 days every week)

• Weekly oral chemo at home (Methotrexate: 3 x 10mg tabs every Thursday)

• Monthly IV chemo at hospital (Vincristine: 1.2mg) Next one Jan. 7

• 5 days every month of oral steroids
(Dexamethasone: 2.5mg twice daily for 5 days)

• Lumbar Puncture (LP or spinal tap) one every 3 months (to check spinal fluid for cancer cells and to  inject chemo into spinal fluid, because IV/Oral chemo does not cross the blood/brain barrier). He had an LP on Day 1 of this cycle and the next one is scheduled for March 4 - Day 1 of the next cycle.

And to spice things up - the daily 6MP and Methotrexate need to be taken on an empty stomach, and the 5 days of steroids every month make him ravenously hungry for about 10 days every month. Good times!

Bloodwork on Dec. 22 confirmed that the at-home meds are properly balanced. Off to a good start.

Since the end of May, the majority of his treatment has been done at the Pediatric Oncology/Hematology Outpatient Clinic at Victoria General Hospital. There, we have a fabulous Pediatric Oncologist and exceptional nursing team. We are required to see our Oncologist at BCCH in Vancouver once every six months. We are fond of the team at BCCH too, but it's so nice to get most treatment closer to home.

Soon, I plan to write about his participation in a clinical trial that is ever-so-slightly tweaking the recipe for the chemo cocktail for kids with ALL, with a goal to see if less of some meds and more of another med will result in better long-term survival rates with less incidence of long-term side effects.

Happy Birthday, Super Jax!

The boy turned SIX! On December 25th!

We had a very lovely, low-key day.

He was pretty sure he wanted a black forest cake.

I asked if he was really sure, with the cherries in it and all.

He was pretty sure.

I made a black forest cake. It was amazing.

He confessed the next day that he really really really 

doesn't like the cherries in it.

Oma came to help celebrate.

There was cake, balloons, gifts, relaxing, lego building.

We may or may not have an official "party" in the next few weeks.

Where there are parties, there are people.

Where there are people, there are germs.