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. 

when cancer came (part three)

when cancer came (part one)

when cancer came (part two)

We were told the night before that our helicopter would be arriving first thing in the morning, and it arrived before 8:00. Jax had still been dozing on and off so I woke him up with the news of the helicopter ride happening very soon. I had just enough time to grab some more snacks from the parent kitchen. Jax wasn't allowed to eat because of the tests and procedures waiting for him at BCCH. He was calm and trusting as we waited for the paramedic team to get organized. Our morning nurse, Andrea, was amazing.

The paramedics were efficient and professional, and they got him snugly wrapped up for the ride across the water.  He wasn't scared, and I think he was even a little bit excited. I awoke with renewed hope that whatever was causing his blood work to go so wonky would be a temporary problem with an easy solution. There was a mood of anticipation rather than dread. Taking a content 5-year old for a helicopter ride has a way of doing that, I suppose.

Walking across the parking lot to the waiting helicopter.

They offered to take a pic of the two of us before loading.

He went in first and once his stretcher was locked in place,
I went around the other side to find my seat.

It was a beautiful day for a flight, and a great day to save a life!

Our family doctor later told me that just as she was arriving at the hospital to do her morning rounds, she saw the helicopter take off, and knew that it was taking us to Vancouver.

From our friend Joanne in Crofton ... 

"We were outside when you flew over. 

I was praying on the driveway and Geoff was 

waving and praying from the back yard."

(It was Geoff's birthday that day.)

It was really loud! Jax had a headset to dull the sound, no mic. 
He could hear the chatter between me and the paramedics.

This pic was featured on the front page of our
small town newspaper a few days later,
with details about Jaxon's diagnosis.

We landed at the Vancouver Airport and then went by ambulance to BCCH. We later learned that the helicopter flies directly to the hospital for more critical traumas and illnesses. Jax was very critically ill but stable enough to take a bit longer to get to the hospital.

Read here to learn more about the 

Infant Transport Team

servicing BC & Yukon.

I followed the paramedics and their precious cargo down a long hallway. My heart caught in my throat as I saw the sign indicating we were entering the Oncology Clinic. Another long hallway past a bunch of small offices and treatment rooms, then into the heart of the clinic. This was the sign on the outside of the room where Paul was waiting for us. I don't know if he was in the isolation room because of his mild cold symptoms, or if that was the only one available.

Hugs all around and worried looks exchanged between the parents. Tears in Daddy's eyes. He had a long time to sit in that little room and wait for us. Jax settled onto the stretcher bed, still happy and compliant with all we were asking of him. I think someone must have put some freezy cream on his hand in preparation to do another blood draw and to start an IV. It was clear that he required a blood transfusion, but the team needed to know what caused such chaos in his blood. They probably knew much more than they let on at that time, but didn't tell us much until they had confirmation. We answered all kinds of questions about his symptoms, his medical history, family medical history ... many times over for many different people.

We changed him out of his shirt and into a hospital gown as it was easier and comfier for all the exams he endured from various doctors and nurses. A medical student started the line for his IV. He did not cry. None of us were thrilled by the student's shaky hands and the mess she made with his blood on the bedsheet. She admitted that she still gets nervous when starting IVs. But the good news was that she picked a really good vein that served his IV needs well for that day and the next.

As displeased as he was about the IV in his hand, he liked the sticker they put on the cut-in-half medicine cup that was protecting the needle ... a golden retriever puppy, much like our Tucker!

We were moved to a different room in the clinic after that. It was in that room that two doctors, both young and beautiful and both named Ashley, as well as a few other people - nurses? Social worker? I don't know - came in to tell us that they had confirmed the presence of leukemia cells (blasts) in his peripheral blood. With tears in her eyes, Ashley S. told us that they couldn't say definitively that he had leukemia until they looked at his bone marrow under the microscope, but that since they saw blasts in his peripheral bloodstream, it was guaranteed to be in the marrow. 

We learned later that meeting with oncology doctors and parents and bad news is referred to as "disclosure".

We were told that he would be going very shortly for the sedated bone marrow biopsy to confirm his diagnosis and would receive his first dose of chemotherapy into his spine.

It must have been at this point that I didn't know whether to cry, shout, vomit, or lay on the cold dirty floor of the tiny little room we occupied. I was hungry, thirsty, tired, terrified.

I've since heard other parents describe those moments as ...

"and a black fear swooped in"

"And the water rushed all around me

and sucked all the air out of the room."

My friend-in-real-life (and fellow Momcologist) Christie said: said:
"I'm writing to make some sense of all of this. It's moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but can't remember what. The fog. I feel like that - all the time. They kept asking us 'do you understand why you're here?' Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this."

I won't say that it's the worst news a parent can hear, because it's not. There are worse things. This was our hardest thing. For Paul and I - it was our darkest hour.

We probably made some phone calls and sent texts to family and friends then. Jax was content watching movies, though he was very hungry! He hadn't eaten anything for about 20 hours.

They came to take him, and us, to the procedure room. Some call it the bubble room. They have a bubble machine to use as a distraction for distraught kiddos. We didn't need the bubbles this time.

I'll never forget the moment I rounded the corner into the room with Jax in my arms. As soon as we entered with our nurse, what seemed like a dozen people in the room turned to look at us. Most wearing scrubs and stethoscopes, some in gloves already, others with paperwork. Their chatter stopped. They were standing, sitting, waiting to take us and our boy somewhere no child or family should ever have to go.

Paul vacated the room pretty quickly. He knew that he'd be out cold himself if he stayed any longer.

I laid Jax on the stretcher and snuggled him until the sleepy medicine took effect. I remember looking at all those faces as I backed out of the room.

Paul was waiting for me in the hallway, just outside the opaque glass doors that someone closed after I left the room. We embraced, and that's when the sobs came. We stood there a minute or two, absorbing what had just happened. Paul said through his tears, "those were angels in there".

We went back to our little cubicle room with glass doors and drew the curtains. I laid on the bed where Jaxon had watched 3 or 4 movies earlier that day. I sobbed, Paul wept quietly. Suddenly all the "what if" and "if only" thoughts came to my mind. Paul talked me through all that, and we chose to focus on that day forward, and not to dwell on why or how we got to be there.

More phone calls. More texts.

I'm not sure how long he was away from us. I know now that 
a lumbar puncture procedure is typically done in under 10 minutes. A bone marrow biopsy likely doesn't take much longer.

He returned to us on the stretcher from the procedure room, still sleeping. A nurse or two came in to monitor his vital signs as he was coming out of the sedation. A few different nurses were there, trading off, and also chatting with us.

Sometime around 5pm, Dr. Ashley came to tell us that the bone marrow biopsy confirmed the diagnosis ... Leukemia. 

Drowning again. 

There were so many faces we met that first day. Doctors, interns, residents, fellows, students, nurses, social worker, research coordinator ... so many. They told us that although it was known to be leukemia, further pathology testing would tell us what main-type and sub-type it was. Knowing those things would dictate the next steps to be taken. There would be a "Family Meeting" the following afternoon for more details, questions and answers.

Then it was time to head upstairs to the oncology ward. 

Our child. Cancer patient.

Paul, Jax & Clinic Nurse Danielle, as we ventured down more unbearably long hallways, then upstairs to Ward 3B, Room 14.

Because of a Norwalk type of virus that was spreading between the two wards (on two different floors) of the oncology department, space was limited. We had roommates. More about them another time.

Our dear friends Frank and Sherri came to bring us McDonald's dinner (at Jaxon's request and against their better judgement). They brought food, hugs, prayers, laughter and encouragement.

Once Jax and I were fed and settled, Paul left to go somewhere to sleep. I think it was to the Easter Seal House.

That was Day One.