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. 

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.

onward!

As we hoped, Jaxon passed his blood test on Tuesday last week, and we were able to start the next round of his treatment protocol. He needed a minimum of .75 ANC and he gave us .93! Platelets needed to be 75 and they're hovering nicely around 400.

Interim Maintenance 2 (IM2)
• IT (Intrathecal = into spinal fluid via sedated lumbar puncture) Methotrexate - Days 1 & 31.
These will be LP #s 10 and 11. Each time he gets IT chemo, a sample of his spinal fluid is collected and checked for leukemic cells. These have always come back clear.

• IV Vincristine & Methotrexate - Days 1, 11, 21, 31, 41

• Septra (oral tablet via jelly bean) 2x daily every Fri/Sat/Sun

IM2 is the final phase in his "frontline" treatment, before Long Term Maintenance begins in Mid-December. With the conclusion of Delayed Intensification, we hope and pray the most gruelling phases are now behind us. We must still be ever vigilant to watch for any signs that his body is not handling the chemo well, or for illness. Paul had a cold for well over a week, and it passed on to Max and Oma. Marty and Jax had a slight cold, but nothing too terrible. It hit me the past few days and I feel a bit run down but not suffering badly. I was worried about passing it on to Jaxon until I realized that he probably gave it to me! I'll call the clinic tomorrow and see if they want me to take any extra precautions, though I feel it's a non-issue as he would have already been exposed to my germs before I had any symptoms.

Nurse Clinician Anne, Dr. Ewa, Nurse Barb
"Checking chemo".  The chemo gets hand delivered from the pharmacy to the Oncology treatment room in that red tackle box. Then one nurse checks it with another nurse to confirm the patient's name, ID #, what the medicine is, how much medicine it is, when the medicine expires, and how
it is to be administered. If in agreement, the nurse presents the medicine to the Dr. prior to administering. The nurse also verifies all the same information with the parent/caregiver.

Super Jax strikes again!
Many thanks to Jaxon's friend Tatum and my friend Becky for this super cool, one of a kind toque! 

Speaking of super cool and one of a kind ...
Thanks so much to my Mama for making these!

And if matching fish hats isn't enough ...
We love our new cozy blankies! I have one too, each of us with a different colour. 

Funny boy ... he came out of his room about half an hour ago and we quickly realized he was still asleep! He didn't really answer our questions and seemed really dazed. He came to snuggle with me but started wimpering and giving obvious "have to pee" cues. I asked him if he had to and he nodded. I told him to go! He hopped down and went straight into the other bedroom. I redirected him and scooped him up onto the loo. On the way there and while he did the deed, he was giggling uncontrollably. I guess he thought it was pretty funny that he went to the bedroom, looking for the toilet. He declined any drinks of water and went straight back to bed. 

On the eve of his last ARAC

We have now nearly finished Jaxon's second round of IV-ARAC (cytarabine). Since beginning this phase (Delayed Intensification) on August 8, he has had a cocktail of 8 different chemo drugs (plus oral antibiotics 2x daily, 3 days a week). After the last dose tomorrow, he will have received ARAC on 8 of the last 11 days. The first four days were more difficult as he also received Cyclophosphomide on the first of those four days, and it is known to be an intense tummy troubler. Even with strong (and expensive!) anti-nausea meds, he had an upset tummy and usually a headache every day for those four days and 2 days after. This week's round has gone much better and he has not had any bouts of nausea. The car ride down here took longer than expected as I had to stop 3 times for him to puke. On Thursday of the first week, we stopped for about half an hour on our way home for a roadside snuggle while we waited for the Gravol to kick in. 

Both last week and this week we have stayed at our home away from home in Victoria, Jeneece Place. (More details about JP to come later when I can post from my computer.) Big bro Marty came with us this trip, which has been a nice distraction for Jax. 

Nothing like several sibling squabbles to help remind us that life moves along despite all the upheaval that Jaxon's illness and treatment brings to our family. Max has been spending time at home with Paul and my Dad as they continue work on our house, and my Mom is enjoying a reunion with her nursing class here in Victoria. Paul's mom is at home, enjoying a much deserved break from living in her trailer at camp and the chaos of renos and helping to care for the big boys while I am focused on Jax. 

Back to details about Jaxon's treatment schedule ... Because the ARAC is so effective in making cancer unwelcome, it also does a doozy to Jaxon's healthy blood cells. His ANC (immunity) is on the decline (.60 ish on Monday) and his platelets (blood clotting powers) are also trending down, he'll need to have his counts checked regularly for the next few weeks, in case a transfusion is required. His hemoglobin is slipping lower as well, which would require a transfusion if it drops drastically. It is more often the case that transfusions are necessary, than not. Consider this your friendly reminder to donate, if you are able! We'll be back here in Vic on Monday and Friday for the next two weeks to check his counts. 

That will take us to the Thanksgiving long weekend and the end of this 8-week phase of DI! 

Interim Maintenance 2 is next. It will bring us clinic appointments every 10 days for 8 weeks for IV Vincristine and IV Methotrexate, as well as 2 LPs (lumbar puncture/spinal tap) - one on Day 1 and one on Day 31, both only happening when he has a minimum of .75 ANC and 75 platelets. It is likely that he will have a one or two week delay before beginning IM2, while his blood cells recover from all the chemo of this current phase. IM2 could start anytime between mid-late October. (I need to update my side-bar, he's now had 9 LPs.)

Renovations at home are continuing at a steady pace! For updates about that, check out Paul's blog ... More Than a Maintenance Man.

The Roadmaps - DI & IM2

The Six Stages of treatment for A.L.L.
Induction (4 weeks) *completed*
Consolidation (4 weeks) *completed*
Interim Maintenance 1 (IM1 - 8 weeks ending 8-07-2014)
Delayed Intensification (DI - 8 weeks beginning approx. 8-08-2014)
Interim Maintenance 2 (IM2 - 8 weeks)
Long Term Maintenance (2.5 years)

* Roadmaps for Induction, Consolidation, IM 1 detailed here. *

Delayed Intensification (DI) 56 days beginning approx. August 8
Jax will have peripheral blood work (from the arm, like a routine blood test) in Duncan, first thing in the morning on August 7 to see if his ANC and Platelets are high enough (ANC @ .75 and Platelets @ 75). Within an hour, we'll know if he reaches those criteria and will then immediately travel to Vancouver to begin Delayed Intensification at BCCH on Friday, August 8.  We need to go to BCCH for this procedure as our Oncologist in Victoria will be away on holidays, and there is no one else in Victoria who can administer the intrathecal methotrexate.  We have to be there for the Pegaspergase on Day 4 (Aug. 11) anyway, so it's not an extra trip - just a weekend at the new 
Ronald McDonald House in Vancouver!

If his counts don't reach the minimum required to begin this phase, we'll try again in another week.

This phase of treatment is aptly named, and likely to be the roughest stretch since the first 6 weeks.  He will receive a cocktail of 8 different chemo medicines over these 8 weeks, in addition to oral antibiotic (Septra) taken every Fri/Sat/Sun for the duration of his three year treatment, to protect against a certain kind of pheumonia that immunocompromised patients are susceptible to. 

He's going to feel really crummy. Two of the eight drugs in this phase are known to severely affect his ANC (immunity), which will reach all-time lows for several lengthy stretches. We will have to be extremely vigilant about any possible exposures to viruses and bacteria. He will most likely lose the rest of his hair. 

Day 1: *count dependant - ANC > 0.75 & Plts > 75 *
IT MTX (Sedated - Intrathecal Methotrexate)

IV VCR (Vincristine)

IV DOXO (Doxorubicin)
This will be a very long day, as the LP for IT MTX takes quite some time and the DOXO requires substantial hydration before, during and after administration, so that his kidneys can properly flush the medicine.

Day 4:

IV PEG-ASP (Pegaspargase)
This drug is known to trigger allergic (and other) reactions, and only certain hospitals have authorization to administer it. He has had it once before, on Day 4 of Induction, with no reaction. However, subsequent doses are more likely to trigger an allergic reaction.

Days 1-7:

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

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

Day 8:

IV VCR

IV DOXO

Day 15:

IV VCR

IV DOXO

Days 15-21:

Oral DEX

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: *count dependant - ANC > 0.75 & Plts > 75 *

IT MTX (sedated)

IV CPM (Cyclophosphamide)

IV ARAC (Cytarabine)

Days 30-32 & 36-39

IV ARAC

Days 29-42

Oral TG (Thioguanine)

Interim Maintenance 2 (IM2) 
56 days beginning approx. early October
IM2 is almost identical to IM1, except that it has one additional IT MTX (sedated lumbar puncture/spinal tap).

Day 1 *count dependant - ANC > 0.75 & Plts > 75 *
IT MTX (sedated)
IV VCR
IV MTX

Day 11
IV VCR
IV MTX

Day 21
IV VCR
IV MTX

Day 31
IT MTX (sedated)
IV VCR
IV MTX

Day 41
IV VCR
IV MTX

Long Term Maintenance will begin on Day 57, or when ANC and Platelets reach .75 and 75. More about LTM in another post, as it gets a little bit complicated. He will be on one of four potential treatment protocols.

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!

cut it down

One of our nurses today said we could think of the process of getting rid of Jaxon's cancer like cutting down a tree.
Phase 1 is cutting down the tree. 
Phase 2 is killing the roots.
Phase 3 is making sure the soil around the roots will only grow good trees from here on in. 

So, yesterday we celebrated the tree has been cut down. There is no longer evidence of the tree, but if we do not kill the roots, it will grow back. So on to Phase 2 we march!

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.

Admitted: May 8

From the very beginning of our treatment here at BCCH, we have been looking forward to this day, "Day 29" of his treatment plan. The real 29th day of his treatment will be this Saturday, May 10th. The clinic is not open for procedures that day, nor will it be open tomorrow because the clinic will be closed for a department-wide conference/training/development day. So today, Day 27, he received his "End of Induction" procedures - a lumbar puncture (LP) to extract spinal fluid to check it for bad cells, and a bone marrow biopsy, to ensure that the first phase of chemo was successful to bring him to remission.

He has had 3 LPs in the past 4 weeks. The first one was on the very first day we arrived at BCCH. It was done to check his cerebral spinal fluid (CSF) for cancer cells, and to inject chemo (intrathecal cytarabine, IT-ARAC) directly into the spinal chord as a precaution, in case the cancer was present there. He had another of these procedures done on Day 8, this time receiving intrathecal methotrexate (IT-MTX). Both times, there have been no signs of cancer in his CSF. It is expected that this test will continue to show negative results. Today he received his second dose of IT-MTX.

As today is not officially the 29th day, he will need to have 3 more doses (morning and bedtime on Friday, and morning on Saturday) of DEX, a powerful cancer fighting steroid . DEX really does a number on kids emotionally and physically.

7:54 am
Clinic procedure appointment at 8:00 am, as planned!

8:42 am
His procedure just started, will be done in about 15 minutes. Some results will be available throughout the day, others by end of tomorrow.

8:46 am (Paul)
When we arrived here at BCCH exactly four weeks ago, we started off in Room 5 in the Oncology Clinic/Intake Ward. On this (hopefully) last day of "Induction" we are in the same room. Full circle. We sat in this room wondering what was wrong with him a month ago and today we're hoping to hear that the bad is gone!

The procedure went well. The first thing he said when he woke up was "NOW can I have some Rice Krispies?"

He's been having some issues with pooping since the onset of his dehydration. We were quite happy to hear that he pooped a bit during his procedure, as it showed that his "lazy gut" was awakening. He pooped lots today, though we are still waiting for more gas and stool to clear his system. Poor little bubs ... his itty bitty body has been through so much. 

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.

Diagnosis: A.L.L.

I thought I had posted this yesterday, but I think I only shared the link about our fundraiser. About that fundraiser ... we are completely blown away by this incredible response of support. Paul wrote this yesterday, and I've made a few changes to it, based on new information from our team today. We have been taking in SO MUCH info, that it's been hard to keep all the facts straight. Sorry for the delay, I thought I had already put this out there. :)

We had our "Family Meeting" at 1:00 on Friday April 11 to find out what this journey of fighting Jaxon's Leukemia will entail.

1. The type of cancer is Pre-B Acute Lymphoblastic Leukemia (A.L.L.)

2. Here's a general timeline...

- First month: He received his first dose of IV chemo (Vincristine) today, as well as several other supplemental oral medicines to counter various side effects of the chemo. He will take those supplemental oral medicines for 28 days. He will receive Vincristine once on each of the next 3 Saturdays. He will receive another important medication (starts with a P, that's all I know) on Tuesday (Day 4). On Days 8 & 29 he will have an injection to protect his spinal fluid from the cancer cells. He already received one dose of this on Thursday when he was sedated for his bone marrow biopsy. Jaxon will lose his hair, be irritable, hungry, (hungry + angry = HANGRY ... our Doc loved that new word), put on weight, and generally not be himself. We have been told that this is the "grin and bear it" time...it will get better! He will be here at BCCH for one more week, then it is expected that we will be discharged to local accommodation for another week so that he can come back regularly for blood count checks and the next dose of Vincristine. At that point it may be possible for us to return HOME where he could have some check-ups and chemo in Victoria or Nanaimo.

- Next seven months: "Regular" visits for IV chemo, daily oral chemo, regular checkups at a hospital, possible hair growth, improved ability to play and interact but somewhat limited.

- Last 2-1/2 years (So, 3yrs total!): This is called the "Maintenance" period. Jaxon will take daily oral chemo, have regular checkups, will be susceptible to a few reactions more than normal but will for the most part be a growing little boy.

So, at the end of the three year term Jaxon will have a clean bill of health and is expected to be fully cured of cancer!

3. Paul and I are overwhelmed at the hundreds (if not thousands!) of people supporting us through this already. Your many prayers have bolstered our faith and God's peace is with us.

4. Some of you have been asking about financial implications through this time. We really don't know what those will be and didn't anticipate that so many would want to help in this way, so our friends have made an online fundraiser on our behalf that you can contribute to if you want to support in that specific way. On the one hand I am torn about this because there are so many others that could use help in this department more than us. On the other hand, I know from personal experience what a blessing is to give (especially to a specific need) and do not want to get in the way of people being blessed through generosity. So, below is a link to our fundraising page if you feel so led to support us in that way.

Thank you all from the bottom of our hearts. This next month will be the toughest, so pray for courage and strength as we watch our little brave boy take this battle head-on!

5. I really need to start a blog.