Home!

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10:50 am
In the clinic playroom and then enjoying a post-procedure popsicle! Because he had a spinal procedure, he has to lay low for an hour, almost done that now. Watching shows until 11:15 when we should get the green light out of here and head to the ferry!

1:37 pm
We are in line and will board the 3:15 boat to Nanaimo!!!

7:45pm
Home to brothers, Oma, Tucker, friends next door. As it should be.

Other than the smiling, teary faces of our family and friends welcoming us home, the first thing I noticed was the SMELL! It's spring, almost summer! Who knew? There were only a few buds on the trees when I left home 6 weeks ago. I came home to the lush greenery, fresh from a rain shower. It was unbelievable. That's when I realized I haven't been outside for more than about 20 minutes since we left home. This is bliss ... until my hay fever kicks in.

The Marty Party, #8!

The Marty Party of 2014! Thank you, our dear camp family and actual family for making this day so special. So much love for our one-of-a-kind boy. This Mama's heart is pining for home and the reunion will be so sweet!

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short and sweet

Jax made the most of his 12 hour stay and made play dough with the fun lady, and played with it and new Lego with his friend Lucas. Thanks for the Mixel, Karen!

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ER & Admitted - May 20

8:30 am
Back in hospital. :( Hopefully just a very short stay. Jax had some lower back pain last night and was very restless. 2 doses of morphine didn't help him settle so we came to ER. Strong suspicion is that it's from a kidney stone. Awaiting a time for kidney ultrasound, which was already on the agenda for our clinic visit today. His pain is on the same side as the suspected stone two weeks ago, though it was not seen on u/s. He's been sleeping since 1am and has not had any more pain. Still REALLY hoping to go home today, but not until this is sorted out. It's Marty's birthday tomorrow so there is added urgency to get home!

8:45 am

Ultrasound at 10:00. Now the challenge will be getting him to drink 4 cups of water/juice, and hold it in! Oy.

5:40 pm

Good news ... and disappointment. 

U/S showed happy and healthy kidneys. Not sure the cause of last night's pain but if kidneys are clear, docs aren't too concerned. We are well stocked with morphine. 

The disappointment is that his procedure for Thursday was not booked for Victoria (admin glitch), so we need to stay in Van until then. We are out of hospital and staying another 2 nights at Easter Seals. I thought about going home for Marty's birthday tomorrow and having Paul come here, but it's too much hassle. Marty will more easily get over my absence than Jax will.

Clinic appointment on Thursday morning at 9 at BCCH and then there should be NO reason why we can't go home. Lesson learned on the unpredictability of dealing with a critically ill child.

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.

our home

via Paul:

Many of you have already generously donated to our Fundraiser page to help our family cover the costs of Jaxon's expenses over the next three years, to which we cannot express enough gratitude.

There is also an urgent great need for Jaxon ... to have a healthy home for him to return to where his immune system can recover. 

We live on site at Camp Imadene and the Imadene Foundation is currently accepting donations so they can renovate our home and bring it up to an acceptable standard of living for Jaxon. All donations are tax receiptable.

Our home needs a few significant upgrades including a kitchen, bathroom, laundry facilities, windows, flooring and a new heating system. These could total up to $60,000 which is a substantial amount of money, but the Imadene Foundation is committed to making sure Jaxon has a suitable home and feel these changes are necessary.

If you, or someone you know, is interested in supporting our family in this way, please check out the Imadene link below (or share it so others can know our need).

This project is somewhat urgent as it is the one thing that is keeping Jaxon from a consistent living environment and is also the last step in seeing him re-united with his brothers and favorite backyard here at Camp.

http://imadene.com/donate/jaxon/more.html

closer to home!

Packing our bags! My Mom, Jax and I will be staying at Easter Seals House for the weekend, back for a clinic appointment on Tuesday morning, then catching the first ferry we can!

Lucas!

Our new friends from RMH! Lucas was a good friend to Jax when both our families were there, and the support and friendship for us parents has been invaluable! We look forward to making new memories together away from the hospital setting! xo

Lucas at RMH!

May 15 - LP/IT-MTX

9:28 am
Waiting with Jax in the Oncology Clinic for his LP today. They are running behind and he's tired of waiting with an empty tummy! He wants his breakfast but must wait, could be another hour yet. Toopy and Binoo are only a mild distraction.

No tests today, just a dose of chemo into his spinal fluid. He'll be getting one today and two more over the next two weeks. Has already had 3 since diagnosis. His spinal fluid has always been negative for cancer, this is standard procedure as a precaution as the IV chemo doesn't cross the blood-brain barrier.

11:06 am
All done now, waiting for him to wake up from his power nap, then it's brunch 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.