LTM • Cycle #2 • fever and other stuff

March 4 - Day 1 of Long Term Maintenance Cycle #2 ...
Marty, Jax and I headed to Victoria for a sleepover at Jeneece Place the night before as our appointment was for early Wednesday morning, with an LP scheduled. Max stayed home with Paul and Oma. Paul could have taken care of him for 24 hrs. starting on Tuesday afternoon, but he was teaching a class for our Auxano students, so it wouldn't work for Max to tag along with him.

Not much more to report about that day. Everything went fine, counts were good. As always, it was great to be at Jeneece Place, our home in Victoria. The boys had a great time playing with all the huge pillows and giant pillows in the theatre room, and I think we watched a movie down there too. Marty quite likes going to appointments with us as he gets to sit on the couch in clinic and play video games. Our appointments are always on Wednesdays, and overnight on Tuesdays if an LP is scheduled. Max has drums on Tuesdays and Wednesdays so as much as he'd like to go with us, he doesn't often. It's also nice for me to not have all 3 boys to wrangle, feed, entertain and referee on hospital days.

On Monday March 16 Jax started getting a bit of a cough. It wasn't too bothersome at first, but it put me on edge to watch for fever. The cough continued the next day. I had taken him that day (Tuesday) for routine bloodwork to check where his counts were at, as they were on the low side at his last clinic appointment. I knew that his ANC was at a good place, so he wasn't severely susceptible to infection. Around 1am Tues/Wed when I checked his forehead, he definitely felt warm. I checked his temp a few times and it was creeping close to the 38.5* (oral) threshold for taking him to the ER. It jumped by half a point in just a few minutes so at 38* I decided to take him in. I called the main switchboard ahead of time to let them know that we were coming, giving them time to ensure that he had a private room away from the general ER population. We had a really terrible experience in the same ER last summer. I haven't blogged about it yet as it's a long story. This time around I was much better prepared and more familiar with the required protocol, and much more confident to be assertive to make sure things were done correctly. The regular pediatric/private exam rooms were occupied, but they kindly escorted us to another room, which I soon learned was the psychiatric emergency consult room. It was certainly sparse, but it was "clean" and separated from the rest of the ER by a door. The door locked from the outside only, and didn't stay closed unless locked. From the outside. There's a trick with disposable rubber gloves to keep the door closed for quiet and privacy without having to fully lock it. When it's usually too bright and noisy to get any sleep in an ER room, the only light coming in was from a tiny tiny window in the door. He had an x-ray to check his lungs and the doc ordered the start of iv antibiotics. Any time an oncology patient spikes a fever, extreme caution must be taken to make sure that there is not an infection in their line/port, as that could very quickly lead to a septic situation that is very hard to reverse. By around 5am he was technically being admitted until he could be seen by a pediatrician who would consult with our team in Victoria. There were NO beds available up on the PEDS ward, so we got to stay in our private suite. We settled to sleep around 5:30am. Just a few hours later the pediatrician arrived. She remembered us from our disastrous visit there last summer (she took good care of us that time, I was very happy with her attention to our situation) and was familiar with the required protocol based on his fever and counts. She was annoyed that she hadn't been called right away when we arrived at 2am.  She had left the hospital about 30 min. before we got there. She figured the ER doc didn't call as Jax wasn't obviously desperately ill. Next time I'll make sure the peds doc gets called regardless. I may or may not have put a call in to the BCCH oncologist on call to confirm that what the ER doc initiated is what they would do at BCCH. That was affirmative. Dr. Jeanne (who I am growing fond of, especially as we were both wearing the same pair of suede Birkenstocks, same colour even!) consulted with our oncologist in Victoria who agreed that IV antibiotics needed to continue until we had results from the blood culture that was taken. That should have been 48 hours, if the culture had actually been processed at the lab in good time. The culture was taken at about 3:30am and didn't get into the lab system until 1pm. Until we had the negative result, he had to get IV antibiotic doses every 24 hours. Dr. Jeanne told us to return to the ER at 7am on Thursday. I sputtered. I stared. I explained that both he and I were rarely awake at that time of night day. She asked if 10pm on Wednesday and Thursday would work better for us. Indeed, that was much more agreeable. My parents arrived for a visit Wednesday evening and we enjoyed some low-key quiet days at home with them. It rained like crazy. Mom went with me to the hospital on Wednesday and Thursday evenings to keep me company for the drive. We finally got the all-clear for no infection at about 4pm on Thursday, so we took a 4th trip to town in as many days, and had his port needle de-accessed. Over the course of our visits those days, a few people heard the basic story of our terrible visit in the summer and we were exceptionally well taken care of. Before the last ER doc knelt down beside Jax to listen to his chest one more time, I kindly reminded him to wash his hands after he had coughed into his hand while we were talking. He was graciously receptive of the reminder. Because the ER was so full at the dinner hour when we went for de-access, we were allowed to wait in the paramedic entrance hallway. A security guard briskly asked us to step into the triage office area while an intoxicated individual was escorted from the ER into the waiting police cruiser. Then back into the hallway we went. There were two chemo-certified nurses on shift so they were well equipped to remove his needle. And THEN we were free to go. Although the fever did not return, the cough got quite gnarly over the week, so much so that he puked when he coughed. He has done that over the years, before diagnosis, so I wasn't terribly alarmed by it. Still, no fun!

ER Tuesday night. I had splurged on getting him this Mario as a prize for the extra bloodwork he needed that morning, and I guess that worked out well as he certainly earned the special treat during the rest of the week. Mario went to the hospital with us each time we went for antibiotics.

Second, or third dose of abx. He looks so wee. This is the same bed he laid in last April for the pediatrician to examine him, and where the vials and vials and vials of blood were drawn, as per the Oncology team awaiting him at BCCH. Almost one year has passed since then. Wow.

April 1 was LTM • Cycle #2 • Day 29
Marty went to Victoria with us again. Max stayed at camp with Paul, shadowing him for the day. Counts were good again and everything went as planned. Jax got to show off his new Bravery Buddy! The Dr. and all the nurses admired it with appropriate oo-ing and aah-ing. Dex began again that night. Last month he didn't get as ravenously hungry as he has other times. He was plenty cranky but not so food-focused as he usually is. I sure hope this round doesn't make up for the lack! Good thing it's Easter weekend, lots of food around to be had. I hope to try my hand at Paska again ... it's been a long time.

Next appointments are April 29 & May 27 in Victoria, and June 24-ish in Vancouver. As Jax is participating in a clinical trial, he needs to be see by the "mothership" hospital every six months or so.

Just like he did last year (one month before diagnosis), Jax was asked to throw the ceremonial first rock in a curling tournament at our local rink. He was super excited when I told him that he had been asked again. He did one session of curling in November, but he switched to skating lessons in the new year. I hope he'll try curling again, he's really good at it! The Mountie beside him is the same one who he marched with last year, and he has daughters in the Jr. curling club. He took very special and attentive care of Jax, knowing the story of all he's been through this past year. The piper was 12 years old, her first time leading a parade on her own. The tournament was the Tim Horton's Juvenile Provincial Championship. 

I can't remember why, but he and I had some free time one afternoon in Duncan, so we went bowling. I took a large container of hand sanitizer in with us and we both cleaned our hands after each turn.

Snuggled in tight for a night in the new little cubby Paul built for him, 

with all his stuffies close by.

This wobbly tooth hung on for a looooooong time! Now when he smiles, you can just barely see the gap from the two missing teeth. I'm sure the big new adult teeth will make up for that nicely. 

Trying so very hard to show off the hole in his smile! 

He's holding his brand new Bravery Buddy.

Here's what I wrote on the pic I posted on Instagram/FB.

Many children who are living with critical (and/or chronic) illnesses are given "bravery beads" or "breads of courage" to mark the steps along their journey. Most beads get strung on a string. Some kids' strings seem to be endless. We didn't get started on Jaxon's beads until several months into his treatment. Catching up after so long was a daunting project. I came across these Bravery Buddies, made by a Canadian Mom to TRIPLETS with eye cancer (retinoblastoma). She made these for her boys and has since made dozens (hundreds?) more for other kids in treatment for various illnesses. I showed a picture to Jax and asked what he thought of a Buddy for his beads instead of a long string, and he was very excited! We ordered it and finally got all the beads tucked in to represent each poke, IV chemo dose, LP, sleep in hospital, helicopter and ambulance ride, ER visit, ultrasound, X-ray, heart test, bone marrow biopsy, port surgery, blood transfusion, course of steroids, a few for some of our good days and some for our really terrible days ... I'm not putting in a bead for the 1000+ doses of daily/weekly oral chemo, or the hundreds of doses of his weekend antibiotics. Bravery Buddies are available for purchase online and every Monday a child is featured on the Bravery Buddies FB page, where donations are sought to cover the cost of the Buddy as a gift. Do you know a kiddo who would like a Buddy to join them in their Bravery?