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.

getting around ... slowly.

We've been having some quiet days here at Easter Seals House. Jax has been feeling good and slowly working on getting more mobile on his own strength. This morning he walked about 10 feet unassisted, and a few other times, shorter distances. Our physio team believes his mobility issues are temporary and caused from being in bed for two weeks, compounded by the effects of the Vincristine chemo. While in hospital this time he was being closely monitored for heart rate, BP, respiration, and his bowel issues. So overall he was feeling crummy and with his restricted food intake, had very little energy. We have a paediatric walker he can use to get moving around but he's not a fan of it. He's more content to walk with my help. We went for a long walk with him in the stroller yesterday and are heading out to do the same now. We expect that as soon as he returns to a home environment where he'll have more motivation to get up and about, he'll be keeping up with the big boys in no time.

physio, poop, bikes, next phase, going home

Jax had a really good day! We spent some time with the physio lady again, and he had some fun (despite his reluctance) and showed signs of increasing strength in his core and leg muscles. He's taking small assisted steps, is sitting on his own, and went for another bike ride this evening. The seat was causing trouble for him as he doesn't have much padding on the rear end, so the lovely lady from the Occupational Therapy Dep't customized a cushion for his toosh. Hoping he'll venture farther on the bike tomorrow. We have another appointment tomorrow morning with O/T and Physio. He tires and gets frustrated easily, so please pray he is eager to do the games and exercises.

Things are going well on his recovery from constipation. Enough said.

We have moved out of our familiar oncology ward, downstairs to the smaller, quieter oncology ward. It's nice to know that we're no longer assigned to the room closest to the nurses' station where they could easily and carefully and very frequently monitor Jaxon in the early days of this admission.

Our Oncologist (Dr. Dix) stopped by to chat about what we can expect in the coming weeks as we move into the phase of treatment called "Consolidation". Thankfully, it's a much less intense one-month phase of his treatment. This Thursday, Jax will receive another IV dose of Vincristine (VCR) and also another intrathecal methotrexate (IT-MTX ... chemo injected into his spinal fluid). He'll get some sleepy milk for that one. If all goes well with those, we expect to be discharged on Friday. Dr. Dix wants us to stay in close proximity to BCCH until we can see him again in the clinic on Tuesday. And THEN ... we hope to hear him say that we are cleared to return to the Island for the rest of his treatment. He'll receive daily oral chemo at home, and will have 2 more weekly IT-MTX (to be done in Victoria).

Paul is planning to head home for the weekend as it's a big annual work weekend at camp that he doesn't want to miss, as long as he's not needed here. My mom will come here to spend the last few Vancouver days with me and Jax.

Admission: May 6

• 12:45 pm
Let the boy eat! Our team feels they've come to the most reasonable explanation for Jaxon's recent issues. Though no kidney stone was seen, his symptoms match up to there being one. He may have passed it already, or it is not large enough to have caused pain or blockage. His lower than expected coagulation factor is likely a delayed side effect of the Pegaspargase he received on Day 4. It is known to cause irritation to other organs. So we have seen two separate issues that have inter-mingling symptoms. The dehydration is to be expected, considering these other issues. He's feeling much more chipper today, and was quick to give me his food order ... water, then a PBJ sandwich, then pizza. Doc says no to that so he's starting off with some apple juice, water and yogurt. In about half an hour we'll try some digestive cookies. The bowel issue is likely because his body saw other things happening that took all the attention away from the gut. Now that we have a good idea of what else has been happening, the hope is that the gut issues will resolve as well. He will still be going for a repeat X-ray to check for changes to the irritated portion of his bowel. We are hopeful that things continue to improve so that we can still go ahead with his final clinic procedures on Thursday of this week.

• 2:05 pm
Paul saw our Top Doc (his name is Dr. David Dix, but we call him Lord Business) in the hallway downstairs. He's not convinced it's a stone, but will be in touch with us in the next day or so. Will keep you posted. When I told one of the Oncology Residents that Dix wasn't so sure about the kidney stone, she grinned and said she was looking forward to debating him on that conclusion. I think he'll be stopping by to see us tomorrow.

Dr. Dix' Nurse Clinician, Karen, came by our room this afternoon and we had a good little chat. I love how very personal this Oncology team is. We talked about Jax and the changes coming to the hospital and RMH, and even her retirement. I hope it won't be in the next 3 years! Both Karen and Dr. Dix assured us (separately) that this will likely be just a blip on Jaxon's road to recovery. Some kids sail right through this phase with no complications, some kids need a bit (or a lot) of extra TLC.

• 10:00 pm
Consensus from our medical team is that Jax is likely passing (or has already passed) some crystals (itty bitty kidney stones). A follow-up ultrasound today (first one taken Sunday evening) shows a portion of his large intestine is still irritated, but that there is no blockage. Time and a few gentle laxatives are expected to resolve the buildup of gas and other stuff that is found in large intestines. Nurses can hear movement in his belly. It is not at all unusual for a child's gut to get lazy and take a holiday when the body is dealing with all the other things that come along with chemotherapy. He has been experiencing some uncomfortable gas pains as we wait for things to get moving.

We are hoping to get him up on his feet tomorrow. He's been resting a whole lot this past few week with very little walking. The chemo also causes joint pain, so he is feeling the effects of that in his hips and isn't confident in his strength to walk, even with assistance. We hope to have a visit from the physio team tomorrow for some ideas and encouragement to get him more mobile. Obviously, walking and moving will help with the bowel issues.

Blood and urine culture lab results show no sign of infection.

His blood counts and electrolytes are at satisfactory levels.