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 house on Angus Drive

Ronald McDonald House BC

From Paul:
33 years ago my sister Debbie was one of the first families to walk through these doors. Yesterday our family was the very last to walk out of those doors. The brand new Ronald McDonald House will be ready in a little over a month. We will be one of the first families to go through the new doors. Thank you everyone who supports BCCH and RMH!

From me:
My Auntie Ruth also stayed there with her toddler and critically ill baby during the house's early years.

We are glad to have experienced this special place for part of our stay here in Vancouver. We would have missed out had we not made some friends and memories there.

Here is a lovely video of A Day in the Life at RMHBC. The bedroom shown just before the 2:00 minute mark is the room we stayed in for almost 2 weeks.

Wednesday May 7th is McHappy Day! 
Via Ronald McDonald House BC ... 
$1 from every Big Mac, Happy Meal, and hot McCafé beverage sold on this day in BC will be donated to Ronald McDonald House BC and other children's charities. Since 2010, proceeds from McHappy Day have helped to build our new House and Surrey Family Room, so be sure to stop by your local McDonald's!

Clinic and other stuff

Jax had his second-to-last BCCH clinic appointment yesterday. He received his final (for now) dose of Vincristine. His blood work showed an excellent report, indicating that healthy cells are returning which can only happen when the diseased cells are lessening.

Here's my Facebook update from yesterday:

Today brought us another Oncology Clinic appointment. Jax received his final dose of Vincristine (chemo) for the Induction phase of treatment. His blood work looks great, really great! His ANC (Absolute Neutrophil Count - google it for more info!) is at 1.31, which means his risk of infection is much lower than it has been in the past 3 weeks, when it dipped as low as 0.27. Both Metric and Imperial measurements are used to calculate blood counts. ANC of 1.31 is within the 1000 range, and is considered "minimal risk of infection". When his HgB count was 40 at diagnosis, others would call it 4. As the ANC increases, it indicates that there is less disease in his blood.

We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.
We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.

And Paul's:

Today we had our second to last visit to BCCH for this initial stage of induction for Jaxon at which the doctor told us, after looking at his blood counts, that we could safely go to a public place with Jax because his ANC's were above 1.0. The fact that his ANC's are above 1.0 means there is room in his bone marrow to produce good white blood cells which means Jax is responding very favorably to the treatment. The next phase (6-7 months) will have various stages of 4 and 8 week treatment mini-phases within it. Each phase will continue to be challenging as Jaxon's body responds accordingly. Please continue to pray for Jax, for us his parents and for Max & Marty too. Your continued support is always encouraging. 

We had a busy day yesterday.  After clinic, we spent several hours at Metrotown, arranging a new cell phone plan for both of us. Paul hasn't had a cell phone since we moved to the Island, just an iPod for texting and emails. With all the traveling back and forth and all the arrangements that he needs to take care of from here or at home, it became clear we needed to get him a phone. We found a great deal with Fido and although it took several hours, we are all set up for easier and reliable communication.

Jax snoozed in the stroller most of the time we were at the mall. I found a few sales and got a couple clothing items I've been needing. Toward the end of our errands at the mall, Jax started telling us "Let's go already! I want out of this mall!" On the way back to RMH he started feeling really icky. He says his tummy feels "bad". Hard to know if it's pain or nausea. After some time spent with his head in a bowl, we gave him half a Gravol. He slept for 16 hours, woke up to pee and give his breakfast order, and is resting again now. Big day yesterday. He hadn't napped for a few days so I guess he's got a lot of catching up to do! He was happy to hear my answer when he asked if he would need a poke today ... Nope! No pokes for lots of days!

O.O.H. (Out of Hospital!)

First night out of BCCH. Thankful for family who provides our own space while on the Mainland. What a whirlwind week its been.

We stayed with my cousin and her sweet family for the first three nights out of the hospital. It was such a gift to be in a home and with family, especially over Easter. Jax was still a bit out of sorts so didn't feel up to much activity, but it was so good to be there.