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. 

REMISSION!

It was right around suppertime, exactly 4 weeks ago, that we were given the news that Jaxon has ALL. 

Around suppertime today, we were told that Jaxon has achieved complete remission!

My facebook post:
Complete. Remission. Achieved!

From Paul:
Bone Marrow results are back ... Zero. Negative. None. Gone. Bye-bye.
In other words, no traces of Leukemia present and we are onto phase two of the process. Can I get an AMEN People!!!

We still have a very long road ahead. The battle has really just begun. The treatment over these past four weeks, the Induction phase, has done as it was designed and expected to do - to eradicate the Leukemia from his cells. We will soon begin the next phase, called Consolidation. We will learn more about it from our Oncology team over the next few days. 

Other really big news of the day is that Jax finally got out some air and other stuff that has been trapped in his lazy gut. Docs have been watching his abdomen closely, as it has been causing him great discomfort and has often looked distended. He went for a third x-ray of his belly today. The scan showed that he had a considerable amount of air, and though it wasn't clearly seen on the scan, it is believed that he has some impacted stool. I'll spare you the details. We know that his bowels are working at a basic level, but he won't be discharged until his poops normalize and the cramping/bloating subsides. He's had some pain again when he pees. They are still working on the theory that there has been some injury to his kidneys. A combination of the dehydration and a suspected stone or crystals. Both the pee and poop issues are expected to resolve on their own. After the results of the x-ray came back late this afternoon, there was talk of him getting an NG tube to alleviate the pressure on his gut. He must have gathered all the details he needed to know about that as shortly after he spent a long and very successful time upon the throne. Who can tell me why all the toilets in this children's hospital are built for adults? So tall and imposing. Horseshoe shaped seat. My boy's little bum and chicken legs just don't do well on such a monstrosity. PZ went and bought a cheap training potty. It sits on the floor beside his bed so we don't have to get him, two supporting adults, and his IV pole into the tiny bathroom with the giant toilet. In the training potty, he can have his feet on the floor and sit comfortably. There was added complexity this evening when docs ordered a urine analysis (to be caught midstream, thank you very much) and a stool sample. They must not be mixed. We rigged up a system on the big toilet, with the removable seat from the training potty.  The nurse was very impressed, and our efforts were "rewarded". He has been returned to NPO (no food or drink by mouth) status, though if he's really hungry or really thirsty, he can have some clear fluids. This is to ensure that the gut continues to awaken and work its magic.

Our sweet nurse Marina just came in to give me the results of the Electrolyte and Metabolite portion of his blood work from this evening. Everything is as it should be, no "flags" to show that any of the levels are out of the normal range. He could still be passing crystals or sediment, but the numbers show that his kidneys are functioning perfectly. 

I don't really want to end this post talking about bodily fluids ...

The cancer is gone. Now, let's keep it that way.

Thank you, Loving Heavenly Father. Our helper, our healer, our hope.