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 10

Jax has been returned to "NPO" ... no food or water by mouth. (He was later allowed clear fluids.) He needs to poop. Docs want to see his poops normalize, and see him use his legs to stand and support himself, and hopefully take some steps. He's lost a lot of muscle tone from the meds, and has therefore lost confidence in his previous athletic prowess. He has had his last dose of the steroid DEX, and so as that wears out of his system, his appetite, activity level, and attitude should begin to improve. The struggle right now is that he needs to move to help the poop move, and because of the abdominal sensitivity, he's hesitant to move! He has been very cranky and sad that he is not allowed to eat what he wants. Please pray specifically for this today! 

Our older boys are on the ferry with Oma, on their way to see us for today and tomorrow!

NPO

NPO means 'nothing to eat or drink by mouth'. This is in place to let his gut rest because of his recent vomiting and lack of pooping. The first thing he said to our nurse this morning was "every stinkin' minute I'm hungry!" Being on a steroid that heightens appetite and then being slapped with an NPO order ... No fun.

Admission: May 4-5

After we caught our breath from the scary time in the ER, we were admitted to the Oncology ward. One of our nurses from our first admission came to the ER to take us upstairs. It was a long tiring night with hardly any sleep. Jax was monitored very closely, vitals taken every hour. He was hooked onto a machine to monitor his heart rate, saturation, and respirations. His respiration levels dropped frequently, which was concerning because it meant he was not breathing deeply. Our clever nurse, Gino (The Filipino) figured out that it was because Jax had to pee that he was taking shallow breaths. Once he agreed to try peeing, his respirations improved. All night, Gino came in every hour (or more frequently) to check his vitals, including neurological tests. I don't remember what the reason for the neuro tests was (checking pupil dilation, following basic instructions, answering basic questions) ... something about his kidneys or pancreas or liver being in a bit of a shock, which can lead to seizures and other issues in the brain.


Here's the update I posted on FB tonight ...

We've had a quiet day, but also a bit of excitement. Our Drs. are a bit puzzled by how Jax is feeling (very sleepy), and what the numbers on his blood work say is going on inside. Ultrasound and x-rays show some irritation to a portion of his bowel, one kidney and ureter. They are not sure if these were caused by his severe dehydration, or if there is something underlying that caused those irritations, which started the trend toward dehydration. If he has an underlying infection, his gut could have "gone on strike" to allow the body to focus on the greater issue. All his other major organs look well and are doing what they should. There is the possibility of a urinary tract infection (already being treated with antibiotics as a precaution) or a kidney stone. A stone was not seen on the u/s, but could still be there. We are in a bit of a "wait-and-see" situation. We expect to have lab results tomorrow from blood and urine cultures that were taken this time last night. Our Dr. is curious (maybe a bit cautious, not yet fully concerned) about what might be causing declines in certain parts of his blood and electrolyte levels. He is being watched carefully. After a tense day, we are looking forward to a restful night sleep and hopefully more clarity tomorrow as to what is going on. He is still not allowed any food or drink but is handling that remarkably well. He was allowed some ice chips with his evening meds. The IV fluids help to keep his thirst quenched. Dr assured us that he is in a much better condition today that what he was in when we brought him here yesterday.

He is sleeping soundly now. I had been snuggling with him so he could play with my hair but I got up to get a few things settled. In the time I was up, he took over my pillow that I left on his bed. He looks pretty darn cozy.