Mercaptopurine (6-MP)

Mercaptopurine (click for more info) is one of the cornerstones of treatment for Acute Lymphoblastic Leukemia in children. Jaxon started taking it during the 28 days of Consolidation, the second month of frontline treatment (May 15 - June 11/14), then not again until he began long-term maintenance in December 2014. He took it nearly every day for the next 900 or so, only skipping about 12 doses due to low counts. 

For the majority of his treatment, he was required to take 6-MP on an empty stomach. It was generally believed by most of the VIPs of childhood cancer treatment that food, especially dairy and citrus, interfered with the absorption of 6-MP, thus jeopardizing its efficacy. This was manageable during Consolidation as I would just wake him up at around midnight, give the meds, and back to sleep he went. 

During LTM, when he had 5 days of steroids and about 5 days of steroids-hangover, it became much more difficult. With unstable emotions, difficulty making decisions, trouble falling asleep, ever-changing food cravings and aversions ... it was really hard to maintain a dose of meds given on an empty stomach. It was a big ask to send the boy to bed hungry when he had spent the whole day not sure of what he wanted to eat and then he FINALLY made a decision. Saying no because it was almost medicine time was just not going to fly. He was supposed to take the 6-MP at as close the same time of day as possible. All that to say, I spent 2.5 years rousing him from his sleep 2 hours after his last bite to eat, just enough to give the meds, and making sure he swallowed fully before laying back down to sleep. I think we might have switched between giving it in the morning and the evening, but for the most part it was done around midnight. That was also encouraged because of the nausea that often came along with the dose. Sleeping it off was better than toughing through it in the morning.

As with the Dex, we started with liquid 6-MP. We only did that for the first round of it in Consolidation. Again, the volume of it plus something to mask it (we used a touch of chocolate syrup during Consolidation) was just too much. We learned that the tablets were easily dissolved in just a tiny bit of warm water, so we changed tactic once he started LTM.

Medicine box during Consolidation.

This photo and all the ones below were taken during the last week of oral chemo!
On Thursdays he also took a dose of oral methotrexate, except for the 1st week
of every 85-day cycle when he received MTX into his spine via an LP.

I was supposed to wear gloves and a mask even just to open the bottle of 6-MP. I did not comply. Parents of kids on chemo who wear diapers are supposed to wear gloves to change them. :( I got very good at pouring the pills from the bottle to the daily box, then from the box into a 5ml syringe. I would pull about 3ml warm water from a tiny glass that I used only for that purpose. I'd cap the syringe and shake it until the pills dissolved. Carefully remove the cap so it didn't splash, remove all the air, pull a tiny bit of Mio water flavouring (orange only! to mask the taste), replace cap and shake again. If you've ever seen one of those little water flavouring bottles you can probably imagine why it worked so well. All without touching any! I could even get them split in half (he took 1.5 pills for a long time) without touching anything. The pill splitter and box went to the biohazard garbage at the hospital when we were done with them.

Label removed, clearly marked with warnings, and kept tucked away in the medicine box.

We called it "drinky medicine".
(Never to be confused with "sleepy medicine"!)
I would carefully remove the cap and he'd suck it up.
By the end of treatment, he was a total pro.
But still, to this day, he will not swallow a pill.
Lots of kids, even really little ones, can swallow their pills with no problem.

Just a few months before his end of treatment date, the powers that be decided that there was no clear advantage to taking 6-MP on an empty stomach. "The Moms" (our oncologist worked really hard not to roll her eyes when I mentioned "The Moms" from an online support group I'm a part of) had been talking and swapping stories for months about how some hospitals lifted the food restrictions around 6-MP while others had not. Every month I'd ask her if she'd heard anything official, and every month it was ... "not yet".  It was such a relief when we finally got the go-ahead to take the 6-MP with food. What a difference it would have made for the previous 800+ doses. We're so glad that new patients don't have to experience that part of it.

This was the penultimate dose.
There was always a bit of residual medicine in the syringe so we always
pulled two extra syringes worth of the warm water in to get it all out.
Syringes went into a biohazard box that we returned to clinic when it was full.
I felt awful with the amount of syringes we went through, but it was just what worked for us. 

Sunday June 11, 2017 was a great day for dinner at friends-who-are-family's house.
They got to celebrate his last dose of chemo with us. It was pretty exciting.
He swigged it back and rode off into the sunset on a borrowed bike, and no helmet.

These friends ... there with us through it all! 

That's our story about mercaptopurine.

Day 720

I forgot to add his ANC in the top right screenshot - it was 2.5.

Day 720 of Jaxon's recovery from Acute Lymphoblastic Leukemia. Almost 2 years into this ordeal, I'm still surprised to learn that some people think he's all done and finished his treatments. Not so! He continues with a cocktail of daily, weekly, monthly and every-three-months chemo administrations (oral, IV, spinal) as well as steroids for 5 days each month (plus several days of steroid hang-over). Every month his blood counts are checked to make sure the ALL remains in remission, and to make sure he is receiving the right dosages of chemo. This month his white blood count is a bit higher than preferred, but we suspect that is because he has some symptoms of a viral illness. If he has no cold symptoms and high counts again next month, his chemo dose will likely increase. If all continues to go according to plan, the anticipated end of treatment is mid-June 2017.

S I X T E E N

This number is significant today for a few reasons. 

It's a new year - 2016. Hard to believe that 2015 has already passed us by. So many emotions as we continued on our path through cancer-land, and the new people we met and stories we heard along the way. This community of parents and children is unlike any other I have known. I am honoured to know these families and to share in their victories and heartbreaks.

I realize it's been a long time since I've posted any actual updates. I guess the main reason for that is that everything is going according to the plan! Jaxon continues to have monthly appointments. I've made a blurb on the side bar to describe what his current treatment protocol dictates.

In November Jax had his S I X T E E N T H lumbar puncture (spinal tap) under sedation. If everything continues to go according to the plan and protocol, he will have about 6 more before the anticipated end of his treatment in June 2017. We are well aware that everything going according to the plan is something we should not hold onto too tightly. 

We have now been in Long-Term Maintenance for just over one year, approaching Day 57 of Cycle 5. While much of the time we carry on with regular life and it could appear as though he is "cancer-free", that is not the whole picture. We are ever vigilant to watch out for potential exposures to illness. What is a minor, common, viral or bacterial infection for a child with a healthy immune system ... can rapidly become dangerous for someone like Jax who is immune-compromised. 

The dosages of the oral chemo he gets every day (and extra on Thursdays) are calculated based on his absolute neutrophil count (ANC). They want his ANC to stay between 0.5 and 1.5. Since beginning LTM in Dec. 2014 his ANC has stayed perfectly where they want it. At his last appointment in December, it was elevated above 1.5 so he got a minor increase of his Thursday chemo (methotrexate). He was also at the end of a viral cough/cold, so that could explain his elevated ANC. Since he had been hovering close to 1.5 for several months and then jumped to 2.3, they decided to see how he handles an increase. At his appointment on January 6th we'll find out if the dosage will stay the same or will be adjusted. Some kids run really high ANC all the time and are constantly seeing meds increase, some run really low and are on low percentages of meds. If the standard dose is 100%, some will get closer to 150% and some only 10%. Each kid is different, and the treatment protocol is designed to treat each patient according to their blood counts. He takes his 6MP first thing in the morning, and then has to wait one hour before he can eat or drink anything other than clear fluids. Some days, the wait is easier than others. 

Dex. Ooooooohhhh, Dex. 
Steroids are a powerful cancer fighter. I don't know why or how they work, but they do. Younger kids in cancer treatment take dexamethasone. Older kids and those who don't handle Dex well take Prednisone. They are taken for varying stretches of time all through treatment. Jax had 28 days at the very beginning, 2 stretches of 7 days (with 7 days off in between) in the most intense part of his treatment, and now takes them 5 days every month. Along with Dex comes mood swings, hunger, anger, hunger + anger = HANGER (it's a thing), agitation, short fuse, food cravings and aversions ... etc. The side effects are the most intense while he's taking the meds, and they can last up to a week afterwards. Even when he's not 'under the influence', I see some effects. He often tells me "I just don't know what to DO!" He said once "I wish I could go back to before I had cancer because I used to always know what to do and now I don't know what to do!" I think it's a restlessness and that's the best way he knows to explain it. Knowing he's hungry but not knowing what to eat. Fixating on something to eat but then not wanting it after he finally gets it. It's a tricky balance to navigate his mood swings, knowing that he is battling a chemical force. We work hard to extend grace while at the same time, ensuring he doesn't learn behaviours and carry them into his regular life. Roid Rage is no joke, and it has a mighty impact on many days of our life. 10-14 days of the month ... we tread lightly.

I found this perfectly worded quote online:

We still have to pay close attention to his body temperature. If he spikes a fever over 38.5* we need to get to the hospital immediately to begin IV antibiotics and find out if a bacterial infection is causing the fever. He could go septic very quickly if there is an infection in his port / line / bloodstream. 

I don't think very much about his monthly bloodwork until we get close to his appointment day. I don't dwell on the possibility of relapse, but as any oncology parent will tell you, the nagging thought is never far away. Remission is a wonderful place to be, but it can go sideways at any time. We remain hopeful that his body will continue to respond well to the treatment with minimal long-term side effects. 

At our appointment at BCCH in December he had an evaluation with an Occupational Therapist. He is part of a study group that is monitoring the effects of Vincristine, the IV chemo he gets every month. I don't have the results of her findings yet. He did the same tests after the first month of treatment.  She was short on time so couldn't complete all the exercises, but I'm hoping we can get that done when we go next time.

She was wearing protective gear because he had a cough, and she didn't want to pick anything up and pass it on to other patients and staff. It was the very end of the cough and no one was really concerned he was contagious, but the precautions must be taken.

It was lovely to be at RMH just before Christmas. The Grand Living Room is lined with about a dozen fully thematically decorated trees. The second night we were there, RMH had arranged for a bus to take families to Canyon Lights at Capilano Suspension Bridge. We had a great time, despite the rain. The ride through the city in the big, tall, fancy charter bus was probably just as exciting for my little country bumpkins.

I got to deliver some soft cozy hats made by my friend Jenny and her grade 4 students. Sweet Samantha picked one for herself and had a hard time deciding which of her many friends to give the others to. Jenny just gave me another bag full of hats to share around. She had made one for Jax when he was first diagnosed and it was such a perfect gift. She actually sent two for him in different sizes. We kept one and gave the other to Kaynan, the little guy we shared a room with our very first night at BCCH. 

Jax and Marek are 3 years apart in age but have a special bond as they were both diagnosed with leukemia on the very same day. We met in the halls of 3B. His Mama Amanda holds a very special place in my heart and we keep close tabs on how each other and our boys are doing. The boys follow the exact same treatment schedule. They travel to BCCH/RMH every month from their home in Whitehorse. We see them every six months when we go to our required appointments at BCCH. It should be noted that it's faster for them to drive to the airport, fly to YVR, drive to RMH ... than it is for us to drive to the ferry, cross the water and drive to RMH. 

Intermittently over the past year, Jax has had signs of blood in his urine. Just a few streaks one time and a slight pink tinge half a dozen other times. It's always been just once and then all is normal. No pain, no fever associated with the blood. Way back in the first month of his treatment, it was thought he might have a kidney stone, but nothing has ever been definite. Ultrasounds and x-rays have been inconclusive. Because of this he has had a few nephrology (kidney) and urology appointments both in Victoria and at BCCH. Again, all very mysterious as to what could be causing these random episodes. His kidneys seem to be happy and healthy with no lumps or bumps or kinks or cracks. We expect to just wait and see if any more symptoms occur and his team of docs will decide where to go from there. 

The wait to see the nephrologist was excruciatingly lengthy. 90 minutes after our appointment time, we met this lovely gal from Sydney, Australia. She's a resident, or medical student, or something. Can't remember. She went over his history with me and gave him a thorough once-over. Once she and the top doc looked at the ultrasound pics from the day before and reviewed his urine samples ... they sent us on our way. Poor bubs was super hungry as I let him sleep too long and he had that one-hour wait before he could eat. I had only brought a few snacks and the Dex was talking to him about ALL THE THINGS he wanted to eat. I wish I could remember this lady's name, she was great with him. She couldn't believe how strong he was, beating her twice in an arm wrestle. He could believe it.

This is my friend Sondra and her boy, Lucas. He is S I X T E E N. 

He was diagnosed with Leukemia this week. My heart aches for this dear family as their lives have taken this unexpected and frightening turn. I pray, with hope, that he responds well to treatment and can get back to the business of being 16 sooner than he could have thought possible after such an upheaval. They face the same three years of treatment that we are in the midst of (some different medicines because he is older), but his prognosis is very good. 

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?

LTM Cycle #1 nearly done!

We are nearing the end of the first 85-day cycle of Long Term Maintenance. Only about 10 more of those to go. 10 more sets of 85 days. No biggie, right?

LTM Cycle 2, Day 1 will be Wednesday March 4. It will begin with an LP (lumbar puncture, aka spinal tap) to check his spinal fluid for cancer cells and to inject chemo into his spine, to kill any cells that dare show their ugly faces. He'll also get his regular monthly IV chemo (1.2 mg of Vincristine) and that evening will start the infamous steroid week. Again. More on that later.

As we began LTM, we were warned that it might take a few weeks/months/cycles to get the dosage for his at-home meds sorted out. Some kids tolerate 100% of the recommended dose. Some kids get bumped down to 3/4, 1/2, 1/4 ... I've heard of one patient who is at 12% of the protocol dose, because that's how much the child's system can handle and still keep blood counts within the magical window that makes oncologists happy. (ANC between 0.75 - 1.5.) If the ANC is too low, the kiddo is getting too much daily/weekly chemo. If ANC is too high, the kiddo needs more daily/weekly chemo to suppress the marrow enough to actively seek and destroy any remaining (or returning) leukemic cells. Jaxon's counts were great for the first check-up of this cycle. On the second check-up, his ANC had dropped to 0.64. Not yet low enough to adjust his daily/weekly chemo dosage, but low enough to watch closely for a few weeks. That day (Feb 4) he began his monthly 5-day stint of steroids (Dex). Dex is known to artificially (but still effectively) elevate the ANC, and the rest of the blood counts as well. The 0.64 result could have meant that he was brewing a virus like a cold, or could have meant that his body decided that the 100% dose of the daily/weekly chemo was too much. The plan was to check counts again in one week and see where they were at. The expectation was that they should be significantly elevated, as usually happens during Dex week. If they were still low, then something suspicious might be going on. I took him for counts on Feb. 10 and indeed, his ANC jumped quite a bit to 2.03. He also started getting a bit sniffly/sneezy/coughy that day - indicative that he indeed had been brewing a virus but the Dex had suppressed the symptoms. Oncologist was happy that ANC did rise with Dex, but still wanted to see where it would settle at after Dex had worn off. Today we went for yet another arm poke and results showed that his ANC is at exactly 0.75. Onc is happy with that, and we won't need to check next week. Two weeks from now will be regularly scheduled check-up (LP + IV Chemo).

If his ANC had still been low, we would have stopped all the at-home daily/weekly chemo until ... I don't know when. It's called a "chemo hold". Because of the clinical trial that he is on, once his ANC reached the minimum level, he would have been started back at a reduced dose of the protocol standard, and then watched to see how his body was tolerating it. For many kids, this up and down takes a long time and lots of bloodwork to get sorted out. The monthly IV chemo and the 5-days-a-month-steroid would continue, no matter what his counts are doing.

There's also something peculiar going on with his kidneys. Way back in May at the end of Induction, there was suspicion of a kidney stone as he had some crystals in his urine and some intense lower back pain. X-rays and ultrasounds showed happy kidneys and urinary system so we left it at that. He had one or two nights of intense lower back pain in August/September, but that could have been from the craziness of all the meds he had during DI at that time. In November and December he had a few pink pees (one with blood streaks), indicating that he may be passing a kidney stone. Pee samples were taken and he showed some indicators of possible kidney stones, but nothing definitive. ONC wanted to have another ultrasound to see if any stones might be visible. January 28 he had an u/s and it did show a 3mm stone. In-depth kidney analysis (via blood sample) showed some low numbers for something that I forget what it's called. It seemed "odd" to the ONC, but not concerning, but worthy of follow-up. She has been in touch with the nephrology department at BCCH to see what to do about the oddity. Special urine sample was sent to BCCH on Feb 4 but we learned yesterday that the sample was of insufficient volume, so it will be redone at our appointment in two weeks. Until then, we work very hard to make sure he gets a minimum 1600 mls of fluids each and every day. Our Onc and the nephrology folks at BCCH would like to find out what is causing him to retain excess calcium and create stones. He could be developing stones that usually dissolve, but this one got a bit bigger. The plan to deal with the stones would be to adjust his diet and continue pushing lots of fluids to help his kidneys flush properly. His symptoms are very sporadic so it's not an alarming or urgent matter, but not one that should be ignored.

Other than all of that business ... he seems the picture of health.  He's full of energy, constantly on the move, making us laugh and charming all the ladies. He seems to be over the virus that popped up last week, ending it off with a two hour nap on Sunday morning. He woke up around 8:30, took his meds, and headed right back to bed with a headache. Of course that sent my head spinning for whatever could be causing him discomfort, but he woke up happy and hungry as ever. I spent extra time taking his temp and frequently touching his forehead, watching for signs of fever. Thankfully, none!

The effects of the Dex are a funny thing. (Long-term side effects of Dex are not funny at all, but we'll deal with those if and when they come.) While on Dex and for several days to a week following, he has very little control over his temper. 'Roid Rage' really is a thing, this I know for sure! His hunger becomes insatiable. He wants something all the time. He either knows exactly what he wants and who shall prepare it and how it shall be served and who is allowed in the room while he eats it and who is allowed to watch him eat it ... or he has no idea what he wants. For him the not knowing what to eat is agonizing! For me, I'm not sure which is more tiring - the constant short-order cooking to keep up with his cravings or trying to come up with something, anything that might possibly, even remotely appeal to him. While the temper and hunger are most intense for about 10 days of the month, I notice that he also struggles with anger while not "under the influence". It becomes a learned behaviour that we need to curb when we know that the Dex is not immediately to blame. The hunger thing ... I dunno. He's super hungry on Dex, and just regular-old-really-hungry the other 20 days of the month.

Watching traffic with brother and friend.

* melt * 

Ice skating lessons with brother Marty!
He's also signed up for T-ball, to start in April.

He counted them ... at least 28, I think. 

Playdough pizza. Play imitates life. So hungry, all the time!

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.