thirty eight.

When Jaxon finished treatment for Acute Lymphoblastic Leukemia on June 11, 2017 - he had been on chemo for 38 months (3.17 years, 165.47 weeks, 1158 days). 

As of 6:00 this evening, he has been off chemo (and the wretched steroids) for as long as he was on! This feels like a really big deal. 

He's been off treatment for just over 3 years.

His most recent check-up in June happened virtually due to Covid-19, and his blood counts were perfectly within normal range. That was the last of his quarterly check-ups. Next one is in December. He'll have check-ups every six months until June 2022, which will take us to 5 years off treatment which is a REALLY big deal in the childhood cancer experience. From there he'll have check-ups once a year until he's old enough to make his own medical decisions. 

We are grateful.

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.

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)

DI - Day FIFTY-SIX!!!

We've known all along that this would be no walk in the park. No cake walking here. A whole lot of really crummy things that we had no choice but to allow/force our boy to go through. We have had to make his life really miserable for a lot of these past six months ... to save his life. We don't dwell on the life-saving part with him (at all). We talk about how we need to do these hard things, there will be sad days, we need to keep on doing what we need to do ... to make sure the cancer goes away and doesn't come back.

Treatment for Leukemia is complicated and extends over several years. 2 years for girls, 3 years for boys. You can guess about the extra bits that boys have that requires them to have an extra year of treatment. Around here they've been called nuggets, tenders, and today ... batteries.

Remember the Roadmaps? Here and here. (See the blurb in my side bar for a quick refresher on the six stages of treatment for A.L.L.) We've been plugging away through the first few stages, with the daunting and aptly named "Delayed Intensification" looming just beyond. It's known to be a difficult phase because of the myriad of chemo drugs that are used, and how they affect the unhealthy and also healthy cells in the body. Each drug used in DI focusses on a the varying stages of cell growth.  It was indeed quite gruelling with lots of appointments either to receive chemo or to check his blood work to see how the chemo was affecting him. He was often nauseous and the thought of one more poke in the arm or in his "button" is starting to send him running to hide. This stage was the one that we officially said "see you later" to his hair. We have been on edge, watching for fever and other signs of illness the most this phase, because he's had low counts for several weeks, and they could stay low for another few weeks.

And now? Apart for waiting for his counts to climb back up, it's over! DI is behind us! His hair is growing in again and his energy is almost boundless. He plays tricks on our clinic nurses and he's chomping his weekend meds like it's candy. (Only because I have embedded it in candy!) He still doesn't like to do it but he's much more compliant than in previous weeks.

Two of drugs he received in weeks 1-5 of DI are known to have a double-whammy punch on his counts, particularly ANC (immunity) and Hemoglobin (oxygen couriers) and Platelets (stop the bleeding!) His counts on Monday the 6th were strong enough that our team agreed we could get his blood work checked in Duncan to make sure he was good going into the long weekend.

He received his last dose of ARAC on September 25. His counts could take up to 28 days following that dose to fully recover. Here's the rundown of his counts the past few weeks:

Sept 29:
ANC 0.23
HGB 80
PLTs 77
*Red blood cell transfusion, please and thanks!*

Oct 3:
ANC 0.15
HGB 112
PLTS 60

Oct 6:
ANC 0.40
HGB 101
PLTs 200

Oct 10:
ANC 0.33
HGB 109
PLTs 407 *!*

He is scheduled to begin Interim Maintenance 2 on Tuesday of this week. It will only begin if his ANC is equal to or greater than 0.75 and platelets are above 75. PLTs look like they'll be alright, but not sure about the ANC. He was fighting a slight cold at the time of that blood work, which would lower his ANC. I think. We will plan for the start of IM2 on Tuesday, but are prepared that he may have a delay of a week or even two while his ANC fully recovers.

I found it a bit humorous to receive a call from our family doctor's office on Friday, but since our Dr. is away, it was a locum who called. He was calling to tell me that he had reviewed the results for Jaxon's bloodwork and that his Absolute Neutrophil Count was critically low, and did I understand the ramifications of this and the precautions I needed to take? I assured him that I had already discussed the results with our Nurse Clinician in Victoria and that we are well prepared in the even that Jaxon should strike a fever.

The Roadmaps - Induction to IM1

In the early days of Jaxon's treatment, we were given reams of paperwork to review and dozens of documents to sign. Part of the information we received is what they call in the biz, The Roadmaps. It's very official and medically written, but we've since learned how to make sense of it all. It outlines the medicines used in each phase of treatment, how they are administered (by mouth, IV, intrathecal ... ), what days they are administered, important notes for physicians, and what bloodwork or other tests are to be completed prior to, or after administration. 

Jaxon is on a treatment protocol for Average Risk Pre-B Acute Lymphoblastic Leukemia. (AALL0932).

The Six Stages of treatment for A.L.L.
Induction (4 weeks) *completed*
Consolidation (4 weeks) *completed*
Interim Maintenance 1 (8 weeks, ending 8-07-2014) *almost completed*
Delayed Intensification (8 weeks)
Interim Maintenance 2 (8 weeks)
Long Term Maintenance (2.5 years)

Induction (approx. 4 weeks duration, Diagnosis April 10 - May 14)
Day -2 (@ diagnosis) 
Complete Blood Count (CBC)
Under sedation:
Bone Marrow Biopsy
Intrathecal Cytarabine - IT ARAC (injected into spinal fluid)
Spinal Tap to check for cancer in his Central Spinal Fluid (CSF) *all clear!*

Every time he receives chemo into his CSF, a sample is taken to check for cancer cells.

Day 1 (Saturday, April 12, 2014)
Surgery to place Vascular Access Device (VAD)
This is used to draw routine bloodwork and to administer fluids and medication as needed.
IV Vincristine (VCR) 1.1mg 
Oral antibiotic (Septra) taken EVERY Fri/Sat/Sun FOR 3 YEARS! To protect against a certain kind of pheumonia that immunocompromised patients are susceptible to.

Day 4 - April 15

IV Pegaspargase (PEG-ASP)

Day 8 - April 17
(Bumped ahead by 2 days because the actual Day 8 landed on Easter weekend)

IV VCR

Methotrexate (IT MTX - sedated, injected into CSF)

Special bloodwork to determine response to chemo (Good results!)

Day 15 - April 25

IV VCR

Day 22 - May 2

IV VCR

Days 1-28
Dexamethasone (DEX) Oral steroid, a powerful cancer fighter

Oral Ranitidine (to protect his stomach lining from the DEX)

Oral Liquid Sweetener (to protect his taste buds from the awful taste of the Ranitidine)

Day 29 - May 8

Under sedation:

IT MTX

Bone Marrow Biopsy to determine response to chemo (Remission!) 

No further bone marrow testing will be required.

Consolidation (4 weeks, May 15-June 11)

Day 1 - May 15

IV VCR

IT MTX (sedated)

Day 8 - May 22

IT MTX (sedated)

Day 15 - May 28

IT MTX (sedated)

Days 1-28

Oral Mercaptopurine (6-MP)

Interim Maintenance 1  (IM1) 56 days began June 11

Begins only when ANC is at .75 or greater. His was .76, so no delay!

Day 1 - June 11

IV VCR

IV MTX (IV Methotrexate, given in escalating doses as long as ANC & Platelets reach criteria.

He began with 70 mg.)

Day 11 - June 20

IV VCR
IV MTX - 110 mg

Day 21 - July 2

IV VCR

IV MTX - 110 mg (His ANC was .60, so dose was not escalated.)

Day 31 - July 14

IT MTX (sedated)
IV VCR
IV MTX - 150 mg

Day 41 - July 23rd

IV VCR

IV MTX - 183 mg

He also had an ECG and an ECHO to get a baseline of his heart structure and function, as one of the drugs used in the next phase of treatment (Doxorubicin - DOXO) is known to affect heart function in some patients. Based on the small dose Jaxon will receive as part of his treatment, it is unlikely that he will have any heart issues down the road, but because it is a known side effect, testing needs to be done prior to receiving DOXO. His cardiac function will be monitored during treatment, and will be regularly tested for the rest of his life. 

We are now enjoying a chemo vacation, as there is nothing scheduled for the rest of this phase. He will have peripheral blood work (from the arm, like a routine blood test) first thing in the morning on August 7 to see if his ANC and Platelets are high enough (ANC @ .75 and Platelets @ 75). If he reaches those criteria, we will travel to Vancouver to begin Delayed Intensification at BCCH on August 8.  This needs to be done at BCCH as he needs an LP (Lumbar Puncture to administer IT MTX) and our Victoria Oncologist will be on holidays. We already knew we would have to be at BCCH on Day 4 of DI for Pegaspargase, so we're just going a few days early and making a weekend out of it. We've booked a room at the new Ronald McDonald House!

Clinic and other stuff

Jax had his second-to-last BCCH clinic appointment yesterday. He received his final (for now) dose of Vincristine. His blood work showed an excellent report, indicating that healthy cells are returning which can only happen when the diseased cells are lessening.

Here's my Facebook update from yesterday:

Today brought us another Oncology Clinic appointment. Jax received his final dose of Vincristine (chemo) for the Induction phase of treatment. His blood work looks great, really great! His ANC (Absolute Neutrophil Count - google it for more info!) is at 1.31, which means his risk of infection is much lower than it has been in the past 3 weeks, when it dipped as low as 0.27. Both Metric and Imperial measurements are used to calculate blood counts. ANC of 1.31 is within the 1000 range, and is considered "minimal risk of infection". When his HgB count was 40 at diagnosis, others would call it 4. As the ANC increases, it indicates that there is less disease in his blood.

We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.
We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.

And Paul's:

Today we had our second to last visit to BCCH for this initial stage of induction for Jaxon at which the doctor told us, after looking at his blood counts, that we could safely go to a public place with Jax because his ANC's were above 1.0. The fact that his ANC's are above 1.0 means there is room in his bone marrow to produce good white blood cells which means Jax is responding very favorably to the treatment. The next phase (6-7 months) will have various stages of 4 and 8 week treatment mini-phases within it. Each phase will continue to be challenging as Jaxon's body responds accordingly. Please continue to pray for Jax, for us his parents and for Max & Marty too. Your continued support is always encouraging. 

We had a busy day yesterday.  After clinic, we spent several hours at Metrotown, arranging a new cell phone plan for both of us. Paul hasn't had a cell phone since we moved to the Island, just an iPod for texting and emails. With all the traveling back and forth and all the arrangements that he needs to take care of from here or at home, it became clear we needed to get him a phone. We found a great deal with Fido and although it took several hours, we are all set up for easier and reliable communication.

Jax snoozed in the stroller most of the time we were at the mall. I found a few sales and got a couple clothing items I've been needing. Toward the end of our errands at the mall, Jax started telling us "Let's go already! I want out of this mall!" On the way back to RMH he started feeling really icky. He says his tummy feels "bad". Hard to know if it's pain or nausea. After some time spent with his head in a bowl, we gave him half a Gravol. He slept for 16 hours, woke up to pee and give his breakfast order, and is resting again now. Big day yesterday. He hadn't napped for a few days so I guess he's got a lot of catching up to do! He was happy to hear my answer when he asked if he would need a poke today ... Nope! No pokes for lots of days!

Standard course of treatment

At this stage in Jaxon's treatment, all indications are that he will follow this protocol, understanding that there may be delays or complications that could arise over the 3 year period.

About treatment, from the Children's Oncology Group website: 

(no longer available online - I'll have to find a new link. RZ 20-Apr-2025)

ALL is a cancer of the blood, so treatment is systemic, meaning it affects the entire body. At the time of diagnosis, the healthcare team will insert a central line to provide treatment.

Chemotherapy is the mainstay of treatment.

• Induction:
 The first phase of treatment usually lasts four weeks. Children receive three or four drugs by mouth, intravenously (into a vein), or into the spinal fluid (intrathecal delivery). The combination of drugs depends upon the leukemia factors as above. The goal of this phase is to kill the leukemia cells and allow normal blood cells to return.

A bone marrow aspirate is performed at the end of this phase. The bone marrow is examined under a microscope, and is expected to show only normal cells. This is called remission. This does not mean that the child is cured, because without further treatment the disease will return. However, it is a very important first step on the road towards being cured. Nearly 98 of every 100 children with ALL enter remission at the end of the first month of treatment. Other tests (such as minimal residual disease) may be performed on the bone marrow and may be more sensitive at finding leukemia cells than looking under a microscope.

• Consolidation:
 The second phase of treatment lasts from 12-16 weeks. Different drugs from those used during Induction are given by mouth and intravenously.

The purpose of the consolidation phase is to kill leukemia cells that may remain after the drugs used in induction. Another main focus is on treating and preventing the growth of leukemia cells within the central nervous system (CNS prophylaxis). To accomplish this, spinal taps with intrathecal chemotherapy (directly into the spinal fluid) are performed weekly. For certain types of leukemia, or if leukemia cells were present in the spinal fluid at the time of diagnosis, radiation therapy may be given to the brain and the spinal column during this phase. In most cases, part of the Consolidation phase will include treatment with the chemotherapy drug methotrexate. Methotrexate is given intravenously, either at lower doses in the clinic or at higher doses that require a 2-3 day stay in the hospital.

• Delayed intensification:
 This 8-week phase of treatment includes medicines similar to those given in Induction and Consolidation. This has been shown to be helpful in preventing leukemia from returning. The exact timing of the doses and the specific drugs used depend upon the individual characteristics of a particular child’s disease.

• Maintenance:
 The final phase of treatment lasts two or three years. Maintenance is much less intensive than the previous treatment and consists mostly of oral medications given at home. There are also intermittent intravenous and intrathecal medications given throughout this phase.