when cancer came (part two)

when cancer came (part one) {here}

I called our family doctor first thing on Wednesday (April 9th, 2014) morning and got an appointment for 12:10pm. The timing was perfect as I could drop the older boys off at their weekly homeschool group class and then go straight to the doctor. That morning there was a meeting for parents about the upcoming changes from the provincial government for the 2014/2015 school year. While the older boys went off to activities with the other kids, Jax stayed close to me for snuggles during the meeting. He received several sympathetic looks from staff and other moms at the meeting. I mentioned my concerns to a few friends after the meeting and they affirmed my decision to pursue bloodwork. Most agreed with me that his complexion looked pale, another friend thought he looked yellow. One friend sent me on my way with a hug and a quick prayer for courage, peace, answers.

While talking with our family doctor, I mentioned my concern about leukemia being the cause of his symptoms. I told her about Debbie. She assured me that leukemia is rare, is not hereditary, and that it was highly unlikely to be the cause. Yet she readily agreed to run bloodwork (at my request), to set all our minds at ease. 

Right from the doctor's office, I took him to the hospital lab for bloodwork. He was a champ! I don't think he even cried, just a flinch at the needle pinch. The boys and I completed our day in town and headed back home. Jax played with the boys next door and made himself a smoothie with Sharon.

At about 6:00pm, the phone rang. Paul answered. After a moment he said "Oh, hello Patricia." And I knew. She asked Paul if I was with him. We went into our bedroom and closed the door, our doctor on speakerphone between us. She said that Jaxon's bloodwork had come back and that it showed his hemoglobin was frighteningly low. (Hgb should have been easily over 100, and it was at 40.) She said "I know I said that this is likely not leukemia, but these are the kind of numbers we see in leukemia." Our stomachs dropped. Voices gone. Tears came. She told us that she had spoken to the pediatrician on-call at the Duncan hospital who agreed that he needed to be assessed quickly and thoroughly. She told us to meet Dr. Z in the emergency department at 8:00. She said that we would not have to wait long to be seen, to tell the triage and registration desk that we were getting a "direct admit" as per our family doctor and would be seen by Dr. Z. At that time I didn't know what "direct admit" meant, now I do. It meant we had a very sick child who needed immediate attention, and we wouldn't be going home anytime soon.

We called Frieda and she immediately started the 90-minute drive to our house. I grabbed my pillow and Jaxon's, as well as his cozy blanket, and maybe a blanket for me. I couldn't think of anything else to take. I must have taken his slippers. He wore big orange rubber boots out the door. He, or maybe the other boys, asked why I was taking pillows and blankets. I said it was because we might be there for a little while and I wanted to make sure we'd be comfy. We fumbled around the house for a bit, I have no idea what we did. I don't think we had supper. Finally, we just decided to make our way into Duncan (25-minute drive). We sent Max and Marty next door to play and eat until Frieda could get to our house to take care of them for the night. I probably called my mom and my sister to let them know what we were doing. I had talked to my sister that day about my concerns, I don't remember if I had told my mom anything at that point. Maybe my sister filled her in?

Updated details from my Mom ...Our phone rang at about 6:45 pm on April 9, 2014. Because it was a Wednesday we had finished supper and I was likely hurriedly cleaning up before the people arrived for Bible Study. It was Laurel-Anne, I think you had asked her to call us. She told me that you had recently been having concerns about Jaxon's health leading to a visit with your family doctor that day. She told me about the call to you at home less than an hour earlier, about the "frighteningly low hemoglobin," and the appointment with the pediatrician in Duncan soon to take place. She also said that you had phoned her to learn about E's anemia after his viral infection.
I went to tell Dad, and as we hugged each other, he asked, "does that sound like leukemia to you?" I answered, "yes." Ten minutes later our friends arrived for Bible Study. We began by telling them what had just transpired and prayed together for your visit with the pediatrician and whatever was to follow.
You were able to phone us at about 10 pm after the visit with Dr. Z and knowing that the helicopter was arranged for the next morning.
I think Laurel-Anne phoned your brothers and families too.
When Dad and I prayed together before falling asleep (yes, I think we did sleep), we determined that we would choose to trust the sovereignty of God. 

When I had heard our doctor mention the name of the pediatrician we'd be seeing, it sounded familiar to me but I couldn't quite place it. We got to the hospital in plenty of time for our 8:00 "appointment". 

Although he was feeling crummy, he was still full of beans and smiles and lovies.
On the way into the ER there were some paramedics hanging around in the ambulance bay and they used some choice words in their conversation just as we walked by. I turned and gave them the stink-eye and carried on inside. As we were sitting talking to the registration clerk, one of the paramedics came in and gave Jax a stuffie. Compliments of Shaw, but still ... I appreciated the sentiment.  Jax would need that buddy over the next few days.

I saw a nice lady come in through the main doors, and as she chatted with someone else in the waiting room before flashing her lanyard to open the door into the ER, I knew why her name sounded so familiar. She had volunteered at our camp a few summers earlier, and she and I had chatted a few times. I don't know if I knew at that time that she was a pediatrician. A few minutes after she went in, Jaxon's name was called. I don't remember if we were seen by a nurse first, or if Dr. Z just came right in to start her examination. 

My darling! What yellow flesh you have!

Dr. Z listened to the history of Jaxon's illness, now hearing it from the perspective of knowing what his blood was telling us. We told her about Debbie. Knowing that his hemoglobin was so drastically low brought much greater urgency to find out why he was still so unwell. She affirmed that it could very well be a viral suppression of his bone marrow, but she did not rule out the fact that it could indeed be "that big scary thing that we really hope it isn't." Further bloodwork would tell us what course of action to take. She prepared us for the fact that he may need to be transported to Victoria or even to BC Children's in Vancouver for further testing. A transfer to Victoria seemed scary enough, knowing that BCCH was a possibility was absolutely mind-blowing. I don't know if she consulted anyone in Victoria, but she did get in touch with the oncology department at BCCH. They told her what blood tests to order. The lab tech came in while Dr. Z was out of the room and commented to us on the vast number of tubes needed to collect all the blood that was to be analyzed. Not helpful, lady. Not helpful. But thanks for doing your job.

Popsicle prize!

After x-ray tattoo prize! Daddy's damp, leaky eyes.

Dr. Z was in and out of our room several times to talk to various people and back to us. She came in to say that BCCH wanted to see him first thing the next morning, and that we'd be going over on the first ferry the next day. When she came in again and said that BCCH wanted him to be FLOWN over the next morning, we were stunned. Again Dr. Z reminded us to hope for the best, but assured us that if it was indeed something big, bad, and scary ... we'd be okay. We could do this thing. The fact that SHE was the pediatrician on-call that night, the way she spoke to us about the serious nature of his illness, the way she cared for us and encouraged us ... we are so very grateful.

We were moved upstairs to the peds ward to settle in for the night. I don't remember any of the names or faces or much of what happened at all. I scrounged around the parent kitchen for something to eat. Digestive cookies and apple juice never tasted so good. Paul went home to gather more clothes and things for me and Jax.

Earlier that week, he had come to me to show me something amazing! "Mom! Look, I can see my heart beeping!" I looked at his chest and indeed I could see his heart beating. Knowing nothing about normal resting or active heart rate for a child, I thought how cute it was that he noticed it. I told him "that's great, it's doing it's job!".  Upon exam in the ER his resting heart rate was noted to be about 132 bpm. Too fast. Because of his severely depleted hemoglobin (the part of the blood that carries oxygen around the body), his heart was needing to work extra hard to sustain his major organs. Several people commented in the early stages of diagnosis that if an adult had such an alarmingly low hemoglobin, we'd be flat on our backs and feeling debilitatingly unwell.

Despite the smiles and "thumbs up", he was really annoyed by the oxygen tubes in his nose. I had to put it back on several times as he knocked it off. One clever nurse adjusted it to go down to his nose from the top of his head, not up from underneath his chin. That worked much better and he finally drifted off to sleep.

I didn't sleep much. I waited for Paul to return with whatever he could think of from home, and I watched this little monitor tell me what his heart rate was (red) and the percentage of oxygen in his blood (green - "sats"). Because his hemoglobin was so low and not doing its job, the extra oxygen he received did the work, and did it well. He stayed on the oxygen all night, and his heart rate and sats remained stable. I found some cookies and milk for myself in the parent kitchen.

Paul came back around 1 or 2 am and snoozed for a bit on the pull-out chair in our room while I snuggled with Jax. The plan was for him to drive our car over on the ferry with our big bag of stuff while Jax and I caught a ride in our own private chopper. Paul caught the 5:45am ferry and got to BCCH before we did.

when cancer came (part three)

when cancer came (part one)

Do you know how to boil a frog? The theory is that you don't drop him into a pot of boiling water because he'll just jump right out. Instead, you put him in cool water and gradually bring it to a boil. Because the temp slowly rises, he doesn't realize what's happening and we all know how that would end for a frog. It was the same with the clues Jaxon's body was giving us that something wasn't right inside. We didn't see the external indicators as much because he was with us all the time. But for those who didn't see him every day, the signs were much more obvious. 

Starting near the end of March 2014, around the 28th, Jaxon had a cough and cold. I noticed that he had been tiring more quickly than he usually would. He'd come to me during the day for extra hugs and snuggles. Looking back, I think he was feeling fatigued but of course he didn't know how to express that and I didn't see it as anything to worry about. His cold symptoms didn't seem too bothersome. He had hives a few times, which was not a surprise as we had discovered in January that he sometimes gets hives when he's fighting a virus. He had some low-grade fevers now and then, but nothing alarming.

I took him to our family doctor on Tuesday April 1st, just to see what she thought. She said that he probably had the same crud that so many people seem to have at that time of year. She said his cough sounded just like many others she had heard over recent months, that it might linger for a few weeks but that he'd surely bounce back. Looking back on the summary of that appointment, I see that she noted he looked pale and subdued. The hives were consistent with his previous reaction to a viral illness. I hadn't been giving him any Tylenol or Advil since he didn't seem "that bad". She said to give him Advil every 8 hours for a day or so to see if he'd perk up. I kept him with me while the boys went to their weekly St. John Ambulance first aid class that night. Since he had a touch of cold and cough and wasn't back up to full energy, he was happy to stay with me. I had a previously booked appointment with our family doctor for myself the next day, Wednesday 2nd.  Jax was with me again and she commented on how he looked so much better than the day before and he was likely well on his way to recovery.  That night we had a Camp Family Dinner. Other than mild cold symptoms, he seemed fine to me. That night our friend Chris took one look at Jaxon and instinctively asked him if he was okay, if he needed to lie down, if he was going to throw up. He saw that Jax looked really pale, told me that he thought it looked like Jax was about to pass out. I appreciated his concern, but didn't think there was much to worry about and still assumed Jax was just getting over something. We had just seen the doctor the day before and she seemed confident nothing was seriously amiss. I don't remember much about the next several days, just that he was still tired and not his usual self. 

These next details are fuzzy for Paul and I, but this is the best we remember it. On Tuesday (8th) afternoon, Paul took the boys to drum lessons. Max had drumline practice and it was Jaxon's turn for his 15 minute lesson with Drum Teacher Conor. Marty hung out with Paul. At 4:45 when Max and Jax came out of their lessons, Drum Teacher Dustin commented to Paul that Jax looked really unwell, and reminded him how important it was to keep sick kids away from the group lesson as illness can spread so quickly on the team. We were still of the belief that he was just getting to the end of whatever viral bug he had and that he was no longer contagious. Paul then called me at home to see if I should call the doctor back to maybe get Jax in for bloodwork before the end of the day. I called the office but they were closing for the day, and told me to call at 9am the next morning for a same-day appointment. At 6:30pm on Tuesday the older boys went to their St. John Ambulance class. As Jax still wasn't feeling top notch, he spent that time with Paul after they dropped the other boys off. One of the SJA leaders mentioned to Paul that Jax really did not look well, and asked if he was sick. That's when the first red flag really broke through our "he's fine" bubble. Paul called me and suggested that I call his Mom to ask for her perspective on what to do next. We thought he might be anemic as a result of this viral sickness he had going on. That happened to my nephew several years ago when he was about 2 and a half. A viral illness can trigger a suppression (like a 'stop work order') of the bone marrow. It's a temporary condition that usually resolves. That's what we really hoped it was, and figured that must certainly be the answer. But we also had a nagging suspicion / fear / dread that his symptoms could very well point to something much more serious. 

Debbie:

Paul's older sister was diagnosed with leukemia (A.L.L. - the same as Jax) when she was 7 years old. Paul was only 4 at the time so he doesn't remember much about her three years of treatment. We've heard bits and pieces from Frieda and Deb over the years. I called Frieda to tell her about Jaxon's illness and the comments we'd been getting from other people, and to ask her about what Debbie's symptoms were before her diagnosis. Deb had some swollen glands, bruising in unusual places (abdomen) and petechiae on her chest. Her bloodwork revealed a low platelet count, while the other components of her blood looked ok. Although we didn't have bloodwork results to look at yet, Jax didn't have any of the symptoms Deb had so we felt reassured.

Debbie, recently returned home from initial treatment in Vancouver.
Age 7 (or maybe 8) in 1982. Bunny snuggles.

Deb & Jax meeting for the first time in June 2009. He was about 6 months old.
Deb celebrated her 40th birthday the same week that Jax was diagnosed.

Frieda agreed that a follow-up call to the Dr. would be a good idea, to insist we get bloodwork done, just to put our minds at ease. It was probably 'nothing' ... but we were not naive to the fact that it could be 'something'. 

when cancer came (part two)

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?

I apologize if this photo is unsettling ...

... Childhood Cancer tends to do that.

No photo to share, but I'm sure we've all seen one.

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!

This New Year

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.

The Long Haul (LTM)

On December 11, Jaxon began Day 1 of Long-Term Maintenance (LTM) at BCCH in Vancouver. I haven't written much about this phase leading up to it for a few reasons. One reason is that the treatment plan up until then was really super complicated, and the other is that there were further confusing details surrounding the Long-Term portion of his treatment.
(Plus, it just seemed so far away!)

"Frontline" treatment for Average Risk Acute Lymphoblastic Leukemia ...
Induction (4 weeks) 
Consolidation (4 weeks)
Interim Maintenance 1 (IM1 - 8 weeks)
Delayed Intensification (DI - 8 weeks)
Interim Maintenance 2 (IM2 - 8 weeks)

Hard to believe that we made it through all that with very little delays, setbacks or complications. We are so grateful for that, knowing that things could have gone very differently.

December 11, 2014 - Day 1 of an 85-day cycle to be repeated approximately 10 times, until spring/summer 2017, about 30 months. (30 months because he's a boy. Girls get one year less LTM because they don't have test!cles. Having test!cles makes boys susceptible to a relapse of the Leukemia so they get chemo for a longer time to make sure every last abnormal cell is eradicated.) 

He's had 37 weeks of treatment since diagnosis on April 10. Granted, those 37 weeks were considerably more intensive than these next 30 months are anticipated to be. We hope and pray that as much of that as possible will be uneventful cancer-butt-kicking. There are absolutely no guarantees that it's now smooth sailing. We must remain vigilant to protect him from "every day" illnesses, no matter how seemingly insignificant as they can lead to a multitude of the aforementioned (and thankfully avoided thus far) delays, setbacks, and complications. Until the end of his treatment, if he spikes a fever, he needs IV antibiotics within 30 minutes, as he could very rapidly crash into septic shock. That's why we are cautiously selective when it comes to social interactions and why we ask you to consider the ways you can help reduce the spread of illness. (Flu shot, anyone?)

Here's the rundown for LTM ...

• Daily oral chemo at home (for NINE HUNDRED DAYS, give or take a few)
(Mercaptopurine aka 6MP: 50mg M-Th and 75mg Fri-Sun)

• 3 days weekly antibiotics to help prevent PCP Pneumonia
(Septra: 40mg twice daily for 3 days every week)

• Weekly oral chemo at home (Methotrexate: 3 x 10mg tabs every Thursday)

• Monthly IV chemo at hospital (Vincristine: 1.2mg) Next one Jan. 7

• 5 days every month of oral steroids
(Dexamethasone: 2.5mg twice daily for 5 days)

• Lumbar Puncture (LP or spinal tap) one every 3 months (to check spinal fluid for cancer cells and to  inject chemo into spinal fluid, because IV/Oral chemo does not cross the blood/brain barrier). He had an LP on Day 1 of this cycle and the next one is scheduled for March 4 - Day 1 of the next cycle.

And to spice things up - the daily 6MP and Methotrexate need to be taken on an empty stomach, and the 5 days of steroids every month make him ravenously hungry for about 10 days every month. Good times!

Bloodwork on Dec. 22 confirmed that the at-home meds are properly balanced. Off to a good start.

Since the end of May, the majority of his treatment has been done at the Pediatric Oncology/Hematology Outpatient Clinic at Victoria General Hospital. There, we have a fabulous Pediatric Oncologist and exceptional nursing team. We are required to see our Oncologist at BCCH in Vancouver once every six months. We are fond of the team at BCCH too, but it's so nice to get most treatment closer to home.

Soon, I plan to write about his participation in a clinical trial that is ever-so-slightly tweaking the recipe for the chemo cocktail for kids with ALL, with a goal to see if less of some meds and more of another med will result in better long-term survival rates with less incidence of long-term side effects.

Happy Birthday, Super Jax!

The boy turned SIX! On December 25th!

We had a very lovely, low-key day.

He was pretty sure he wanted a black forest cake.

I asked if he was really sure, with the cherries in it and all.

He was pretty sure.

I made a black forest cake. It was amazing.

He confessed the next day that he really really really 

doesn't like the cherries in it.

Oma came to help celebrate.

There was cake, balloons, gifts, relaxing, lego building.

We may or may not have an official "party" in the next few weeks.

Where there are parties, there are people.

Where there are people, there are germs.