that was a very long day

November 12th
Interim Maintenance 2 - Day 31 {of 56}

We often have loooooong days in the clinic at our sort-of-local hospital in Victoria, or at BC Children's. Most clinic days are long-ish. I rarely make any other plans on clinic days. Anything extra that gets accomplished is a bonus. We usually know when a day will be exceptionally long, but sometimes we don't. Last Wednesday (IM2 Day 31) was one of the days we were there much longer than expected. Jax had a scheduled LP (#11 - only about 11 more to go between now and June 2017!) and additional IV chemo. The LP always gets done first. Jax, Marty and I slept at Jeneece Place the night before so we'd have an easy morning before the appointment. We got to the hospital at about 8:40 and began the process of weighing, measuring, vitals-taking, port accessing, waiting around for bloodwork results. This visit also required fasting since he'd be sedated for the LP. By about 10/10:30 we learned there was a delay as the pediatric intensivist we needed for Jaxon's sedation was in the ICU with a child in an acute trauma situation (ill or injured, I'm not sure). At 11:00 we learned that the earliest possible time for Jax's LP to go ahead was 1pm. Ugh. That is a long time to be waiting around, not eating. Marty and I didn't eat or drink in front of Jax since we was not allowed. I managed to sneak out and get Marty some cereal, and then later a bagel that he ate in another room. I got my tea before my didn't-have-my-tea-yet headache could kick in. I even managed to get to the cafeteria for the famed Butter Chicken that is only served on Wednesdays. It was really, really tasty. I ate it outside Jax's room. By 12:30 he was getting super duper antsy, hungry, thirsty, and thusly - cranky. The intensivist did indeed show up at 1:00 so we were able to get the LP going. I'm amazed at what our oncologist can do in a span of just a few minutes after Jax falls asleep. She accesses his cerebrospinal fluid, harvests a small vial of it for analysis (has always been cancer-free), and injects 8mg of chemo directly into his spinal column. This is done because IV chemo does not cross the blood/brain barrier so any sneaky cancer cells hiding in there would have free reign.

The LP procedure finished in record time and he woke up quickly. He had to stay horizontal for an hour to prevent a headache and to allow the medicine to spread out in his spinal fluid. Once he was no longer seeing double, thanks to the sleepy meds he had, TV watching ensued. We had the "private suite" for the day, because of the LP and the entourage of medical folks that come along with it. Marty made himself quite at home in the treatment room beside us with a DS, blankie and pillow on the couch.

As unpleasant as the hungry waiting-for-a-spinal-tap was, I was comforted knowing that my child was not in an urgent care situation, and the thought of the other family going through a time of umcertainty put our delay into perspective.

Heather, Child Life student, came with Christmas crafts for the boys.
Each decorated a clear ball ornament and Jax did an extra one that
will be on a special tree on display at the Empress Hotel!

IV chemo of the Vincristine and Methotrexate variety were administered in short order, and we were soon on our way. We left by about 3pm and headed to Jeneece Place to pack up and head home. Jax fell asleep in the stroller on the 5 minute walk from the hospital to JP, and slept about another hour while I packed and loaded the car. He woke up just in time to realize he didn't get to play on the outdoor riding toys at JP but was consoled by the promise of pizza on the way home. Both boys then napped in the car. It was a late bedtime that night as they were full of energy from all that snoozing.

Jaxon's next treatment (IM2 Day 41) is Monday, November 24th, which also happens to be my birthday. He and I will spend the day at the clinic then we'll head back home for our Imadene Staff Family Christmas Dinner Extravaganza.

Following that appointment, the next big day is bloodwork on December 9 to see if he's good to go to start LONG-TERM MAINTENANCE in Vancouver on December 10. If he passes his blood test, he and I will go straight to the ferry. I'm hoping we are able to stay at RMH for that night and the next one.

The protocol for rest of Jaxon's tratment, Long-Term Maintenance is yet to be determined. He is part of a large study about the best way to treat ALL with successful outcomes and minimal long-lasting side effects. He will be on one of 4 arms of treatment and it's really confusing to try to explain, but I'll do my best ... but that's another post.

Sometimes I forget that he's fighting the greatest battle of his wee little life ...

Admitted: May 8

From the very beginning of our treatment here at BCCH, we have been looking forward to this day, "Day 29" of his treatment plan. The real 29th day of his treatment will be this Saturday, May 10th. The clinic is not open for procedures that day, nor will it be open tomorrow because the clinic will be closed for a department-wide conference/training/development day. So today, Day 27, he received his "End of Induction" procedures - a lumbar puncture (LP) to extract spinal fluid to check it for bad cells, and a bone marrow biopsy, to ensure that the first phase of chemo was successful to bring him to remission.

He has had 3 LPs in the past 4 weeks. The first one was on the very first day we arrived at BCCH. It was done to check his cerebral spinal fluid (CSF) for cancer cells, and to inject chemo (intrathecal cytarabine, IT-ARAC) directly into the spinal chord as a precaution, in case the cancer was present there. He had another of these procedures done on Day 8, this time receiving intrathecal methotrexate (IT-MTX). Both times, there have been no signs of cancer in his CSF. It is expected that this test will continue to show negative results. Today he received his second dose of IT-MTX.

As today is not officially the 29th day, he will need to have 3 more doses (morning and bedtime on Friday, and morning on Saturday) of DEX, a powerful cancer fighting steroid . DEX really does a number on kids emotionally and physically.

7:54 am
Clinic procedure appointment at 8:00 am, as planned!

8:42 am
His procedure just started, will be done in about 15 minutes. Some results will be available throughout the day, others by end of tomorrow.

8:46 am (Paul)
When we arrived here at BCCH exactly four weeks ago, we started off in Room 5 in the Oncology Clinic/Intake Ward. On this (hopefully) last day of "Induction" we are in the same room. Full circle. We sat in this room wondering what was wrong with him a month ago and today we're hoping to hear that the bad is gone!

The procedure went well. The first thing he said when he woke up was "NOW can I have some Rice Krispies?"

He's been having some issues with pooping since the onset of his dehydration. We were quite happy to hear that he pooped a bit during his procedure, as it showed that his "lazy gut" was awakening. He pooped lots today, though we are still waiting for more gas and stool to clear his system. Poor little bubs ... his itty bitty body has been through so much.