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.

hello. all is well.

Hi friends.

I'm working on getting this old blog updated with more of the details from treatment and our life since then. I'll be backdating some posts, so they won't show at the top.

Nearly 2 years off of active treatment, Jaxon is 10 years old and thriving. He completed his first full season of minor hockey in March and began his 6th season of minor baseball on April 1.

April 10 was the 5th anniversary of his diagnosis.

It was also the first game of ball season - a home opener!

Five years today was our family’s darkest day when we learned of Jaxon’s leukemia diagnosis. We didn’t know what the next hours or days would look like but here we are now. Ever and always grateful. Rejoicing with other survivors, remembering the ones who are still walking through the deep waters of treatment and uncertainty, and honouring the ones who are no longer with us. ♥️ Even JUST ONE kid with cancer is TOO MANY KIDS WITH CANCER!

Today, after spending 4 hours playing lots of road hockey and a little bit of video games with his friends he asked me "what are we doing today?".

Life is good.

Jax accumulated a LOT of Lego over his 3 years in treatment, and continued to collect after as well. In January he decided to reduce his collection. Some favourites were kept, some given to brother Marty, some sent to the consignment store, and several smaller sets donated to the peds oncology clinic at VGH for kids to build on long days, or just to take home.

Jax and Tucker sorting Lego - January 2019
{Tucker is 11, one year and one month older than his littlest boy.}

one - year - countdown!

Jax finished DEX for this month yesterday. This morning, moments after eating a huge bowl of Mr. Noodles, he came to tell me he was still hungry. 
I listed off some options, to which he replied 'no' for each. Then I suggested 
a grilled cheese sandwich. He paused ... "No. But you almost got me with that one Mom!" After another pause ... "Actually, you did get me with that one. Yes please!"

Perfectly timed with the start of our one-year countdown until the anticipated end of treatment date (June 11, 2017!), our boy was honoured by his baseball coach with this ...

He thoroughly enjoyed playing ball once again 

and is eager for next season to start!

I took this screenshot of my countdown on June 11. 

We have completed 2 years and 2 months of treatment/recovery 

from A.L L. Now less than 1 year remaining!

It's an odd feeling. Many oncology parents agree that the official end of treatment is a time of very mixed emotions. For many, the end of treatment marks the start of increased anxiety, worry, and fear. As long as Jax is receiving chemo, we have a significant level of assurance that the Leukemia will stay in remission. Once we stop the oral, IV and spinal chemo regime ... The "safety net" is gone. It's the end of treatment but the beginning of questions like "Did he get enough?", "Did it work?", "Will it come back?".  At this point I don't tend to dwell on those thoughts. They are questions with no answers. Like my Mom said when Jax was first diagnosed ... It is in situations where I understand the least that when the sovereignty of God matters the most. We trust that He will carry us safe to shore - however that may play out. 

Even at his monthly IV chemo appointment last week, in the words of a fellow oncology mom ... "Leukemia didn't bother us much!" We are so very grateful that the most intense parts of his treatment are over, and that he is responding well to treatment. We have daily reminders that this is not always the case. 

Here is our beloved Anne doing her thing. 

These two bros got plenty of screen time to pass the hours while we waited for bloodwork to be processed, meds to arrive, meds to be checked, meds to be administered and monitored. 

Anne was the designated chemo giver that day since these two ladies ...

... are not allowed! 

This was the last day we'd see both of them before their maternity leaves begin. Steph, on the right, was working her last shift. Sarah hopes to work a few more weeks before her baby comes but we'll be in Vancouver for our next chemo appointment so we won't see her. 

So much love for these ladies for their roles in our small but mighty pediatric oncology clinic in Victoria. ⭐️💕🎗

July 19 will mark DAY 1 (of 85) of CYCLE 8 (of 11) of Long-Term Maintenance. We travel to BCCH twice a year to check in with our top docs. That was supposed to happen in June but we extended it by a month to coincide with our summer holiday plans. More on that in another post. 

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.

LTM • Cycle #2 • fever and other stuff

March 4 - Day 1 of Long Term Maintenance Cycle #2 ...
Marty, Jax and I headed to Victoria for a sleepover at Jeneece Place the night before as our appointment was for early Wednesday morning, with an LP scheduled. Max stayed home with Paul and Oma. Paul could have taken care of him for 24 hrs. starting on Tuesday afternoon, but he was teaching a class for our Auxano students, so it wouldn't work for Max to tag along with him.

Not much more to report about that day. Everything went fine, counts were good. As always, it was great to be at Jeneece Place, our home in Victoria. The boys had a great time playing with all the huge pillows and giant pillows in the theatre room, and I think we watched a movie down there too. Marty quite likes going to appointments with us as he gets to sit on the couch in clinic and play video games. Our appointments are always on Wednesdays, and overnight on Tuesdays if an LP is scheduled. Max has drums on Tuesdays and Wednesdays so as much as he'd like to go with us, he doesn't often. It's also nice for me to not have all 3 boys to wrangle, feed, entertain and referee on hospital days.

On Monday March 16 Jax started getting a bit of a cough. It wasn't too bothersome at first, but it put me on edge to watch for fever. The cough continued the next day. I had taken him that day (Tuesday) for routine bloodwork to check where his counts were at, as they were on the low side at his last clinic appointment. I knew that his ANC was at a good place, so he wasn't severely susceptible to infection. Around 1am Tues/Wed when I checked his forehead, he definitely felt warm. I checked his temp a few times and it was creeping close to the 38.5* (oral) threshold for taking him to the ER. It jumped by half a point in just a few minutes so at 38* I decided to take him in. I called the main switchboard ahead of time to let them know that we were coming, giving them time to ensure that he had a private room away from the general ER population. We had a really terrible experience in the same ER last summer. I haven't blogged about it yet as it's a long story. This time around I was much better prepared and more familiar with the required protocol, and much more confident to be assertive to make sure things were done correctly. The regular pediatric/private exam rooms were occupied, but they kindly escorted us to another room, which I soon learned was the psychiatric emergency consult room. It was certainly sparse, but it was "clean" and separated from the rest of the ER by a door. The door locked from the outside only, and didn't stay closed unless locked. From the outside. There's a trick with disposable rubber gloves to keep the door closed for quiet and privacy without having to fully lock it. When it's usually too bright and noisy to get any sleep in an ER room, the only light coming in was from a tiny tiny window in the door. He had an x-ray to check his lungs and the doc ordered the start of iv antibiotics. Any time an oncology patient spikes a fever, extreme caution must be taken to make sure that there is not an infection in their line/port, as that could very quickly lead to a septic situation that is very hard to reverse. By around 5am he was technically being admitted until he could be seen by a pediatrician who would consult with our team in Victoria. There were NO beds available up on the PEDS ward, so we got to stay in our private suite. We settled to sleep around 5:30am. Just a few hours later the pediatrician arrived. She remembered us from our disastrous visit there last summer (she took good care of us that time, I was very happy with her attention to our situation) and was familiar with the required protocol based on his fever and counts. She was annoyed that she hadn't been called right away when we arrived at 2am.  She had left the hospital about 30 min. before we got there. She figured the ER doc didn't call as Jax wasn't obviously desperately ill. Next time I'll make sure the peds doc gets called regardless. I may or may not have put a call in to the BCCH oncologist on call to confirm that what the ER doc initiated is what they would do at BCCH. That was affirmative. Dr. Jeanne (who I am growing fond of, especially as we were both wearing the same pair of suede Birkenstocks, same colour even!) consulted with our oncologist in Victoria who agreed that IV antibiotics needed to continue until we had results from the blood culture that was taken. That should have been 48 hours, if the culture had actually been processed at the lab in good time. The culture was taken at about 3:30am and didn't get into the lab system until 1pm. Until we had the negative result, he had to get IV antibiotic doses every 24 hours. Dr. Jeanne told us to return to the ER at 7am on Thursday. I sputtered. I stared. I explained that both he and I were rarely awake at that time of night day. She asked if 10pm on Wednesday and Thursday would work better for us. Indeed, that was much more agreeable. My parents arrived for a visit Wednesday evening and we enjoyed some low-key quiet days at home with them. It rained like crazy. Mom went with me to the hospital on Wednesday and Thursday evenings to keep me company for the drive. We finally got the all-clear for no infection at about 4pm on Thursday, so we took a 4th trip to town in as many days, and had his port needle de-accessed. Over the course of our visits those days, a few people heard the basic story of our terrible visit in the summer and we were exceptionally well taken care of. Before the last ER doc knelt down beside Jax to listen to his chest one more time, I kindly reminded him to wash his hands after he had coughed into his hand while we were talking. He was graciously receptive of the reminder. Because the ER was so full at the dinner hour when we went for de-access, we were allowed to wait in the paramedic entrance hallway. A security guard briskly asked us to step into the triage office area while an intoxicated individual was escorted from the ER into the waiting police cruiser. Then back into the hallway we went. There were two chemo-certified nurses on shift so they were well equipped to remove his needle. And THEN we were free to go. Although the fever did not return, the cough got quite gnarly over the week, so much so that he puked when he coughed. He has done that over the years, before diagnosis, so I wasn't terribly alarmed by it. Still, no fun!

ER Tuesday night. I had splurged on getting him this Mario as a prize for the extra bloodwork he needed that morning, and I guess that worked out well as he certainly earned the special treat during the rest of the week. Mario went to the hospital with us each time we went for antibiotics.

Second, or third dose of abx. He looks so wee. This is the same bed he laid in last April for the pediatrician to examine him, and where the vials and vials and vials of blood were drawn, as per the Oncology team awaiting him at BCCH. Almost one year has passed since then. Wow.

April 1 was LTM • Cycle #2 • Day 29
Marty went to Victoria with us again. Max stayed at camp with Paul, shadowing him for the day. Counts were good again and everything went as planned. Jax got to show off his new Bravery Buddy! The Dr. and all the nurses admired it with appropriate oo-ing and aah-ing. Dex began again that night. Last month he didn't get as ravenously hungry as he has other times. He was plenty cranky but not so food-focused as he usually is. I sure hope this round doesn't make up for the lack! Good thing it's Easter weekend, lots of food around to be had. I hope to try my hand at Paska again ... it's been a long time.

Next appointments are April 29 & May 27 in Victoria, and June 24-ish in Vancouver. As Jax is participating in a clinical trial, he needs to be see by the "mothership" hospital every six months or so.

Just like he did last year (one month before diagnosis), Jax was asked to throw the ceremonial first rock in a curling tournament at our local rink. He was super excited when I told him that he had been asked again. He did one session of curling in November, but he switched to skating lessons in the new year. I hope he'll try curling again, he's really good at it! The Mountie beside him is the same one who he marched with last year, and he has daughters in the Jr. curling club. He took very special and attentive care of Jax, knowing the story of all he's been through this past year. The piper was 12 years old, her first time leading a parade on her own. The tournament was the Tim Horton's Juvenile Provincial Championship. 

I can't remember why, but he and I had some free time one afternoon in Duncan, so we went bowling. I took a large container of hand sanitizer in with us and we both cleaned our hands after each turn.

Snuggled in tight for a night in the new little cubby Paul built for him, 

with all his stuffies close by.

This wobbly tooth hung on for a looooooong time! Now when he smiles, you can just barely see the gap from the two missing teeth. I'm sure the big new adult teeth will make up for that nicely. 

Trying so very hard to show off the hole in his smile! 

He's holding his brand new Bravery Buddy.

Here's what I wrote on the pic I posted on Instagram/FB.

Many children who are living with critical (and/or chronic) illnesses are given "bravery beads" or "breads of courage" to mark the steps along their journey. Most beads get strung on a string. Some kids' strings seem to be endless. We didn't get started on Jaxon's beads until several months into his treatment. Catching up after so long was a daunting project. I came across these Bravery Buddies, made by a Canadian Mom to TRIPLETS with eye cancer (retinoblastoma). She made these for her boys and has since made dozens (hundreds?) more for other kids in treatment for various illnesses. I showed a picture to Jax and asked what he thought of a Buddy for his beads instead of a long string, and he was very excited! We ordered it and finally got all the beads tucked in to represent each poke, IV chemo dose, LP, sleep in hospital, helicopter and ambulance ride, ER visit, ultrasound, X-ray, heart test, bone marrow biopsy, port surgery, blood transfusion, course of steroids, a few for some of our good days and some for our really terrible days ... I'm not putting in a bead for the 1000+ doses of daily/weekly oral chemo, or the hundreds of doses of his weekend antibiotics. Bravery Buddies are available for purchase online and every Monday a child is featured on the Bravery Buddies FB page, where donations are sought to cover the cost of the Buddy as a gift. Do you know a kiddo who would like a Buddy to join them in their Bravery?

that was a very long day

November 12th
Interim Maintenance 2 - Day 31 {of 56}

We often have loooooong days in the clinic at our sort-of-local hospital in Victoria, or at BC Children's. Most clinic days are long-ish. I rarely make any other plans on clinic days. Anything extra that gets accomplished is a bonus. We usually know when a day will be exceptionally long, but sometimes we don't. Last Wednesday (IM2 Day 31) was one of the days we were there much longer than expected. Jax had a scheduled LP (#11 - only about 11 more to go between now and June 2017!) and additional IV chemo. The LP always gets done first. Jax, Marty and I slept at Jeneece Place the night before so we'd have an easy morning before the appointment. We got to the hospital at about 8:40 and began the process of weighing, measuring, vitals-taking, port accessing, waiting around for bloodwork results. This visit also required fasting since he'd be sedated for the LP. By about 10/10:30 we learned there was a delay as the pediatric intensivist we needed for Jaxon's sedation was in the ICU with a child in an acute trauma situation (ill or injured, I'm not sure). At 11:00 we learned that the earliest possible time for Jax's LP to go ahead was 1pm. Ugh. That is a long time to be waiting around, not eating. Marty and I didn't eat or drink in front of Jax since we was not allowed. I managed to sneak out and get Marty some cereal, and then later a bagel that he ate in another room. I got my tea before my didn't-have-my-tea-yet headache could kick in. I even managed to get to the cafeteria for the famed Butter Chicken that is only served on Wednesdays. It was really, really tasty. I ate it outside Jax's room. By 12:30 he was getting super duper antsy, hungry, thirsty, and thusly - cranky. The intensivist did indeed show up at 1:00 so we were able to get the LP going. I'm amazed at what our oncologist can do in a span of just a few minutes after Jax falls asleep. She accesses his cerebrospinal fluid, harvests a small vial of it for analysis (has always been cancer-free), and injects 8mg of chemo directly into his spinal column. This is done because IV chemo does not cross the blood/brain barrier so any sneaky cancer cells hiding in there would have free reign.

The LP procedure finished in record time and he woke up quickly. He had to stay horizontal for an hour to prevent a headache and to allow the medicine to spread out in his spinal fluid. Once he was no longer seeing double, thanks to the sleepy meds he had, TV watching ensued. We had the "private suite" for the day, because of the LP and the entourage of medical folks that come along with it. Marty made himself quite at home in the treatment room beside us with a DS, blankie and pillow on the couch.

As unpleasant as the hungry waiting-for-a-spinal-tap was, I was comforted knowing that my child was not in an urgent care situation, and the thought of the other family going through a time of umcertainty put our delay into perspective.

Heather, Child Life student, came with Christmas crafts for the boys.
Each decorated a clear ball ornament and Jax did an extra one that
will be on a special tree on display at the Empress Hotel!

IV chemo of the Vincristine and Methotrexate variety were administered in short order, and we were soon on our way. We left by about 3pm and headed to Jeneece Place to pack up and head home. Jax fell asleep in the stroller on the 5 minute walk from the hospital to JP, and slept about another hour while I packed and loaded the car. He woke up just in time to realize he didn't get to play on the outdoor riding toys at JP but was consoled by the promise of pizza on the way home. Both boys then napped in the car. It was a late bedtime that night as they were full of energy from all that snoozing.

Jaxon's next treatment (IM2 Day 41) is Monday, November 24th, which also happens to be my birthday. He and I will spend the day at the clinic then we'll head back home for our Imadene Staff Family Christmas Dinner Extravaganza.

Following that appointment, the next big day is bloodwork on December 9 to see if he's good to go to start LONG-TERM MAINTENANCE in Vancouver on December 10. If he passes his blood test, he and I will go straight to the ferry. I'm hoping we are able to stay at RMH for that night and the next one.

The protocol for rest of Jaxon's tratment, Long-Term Maintenance is yet to be determined. He is part of a large study about the best way to treat ALL with successful outcomes and minimal long-lasting side effects. He will be on one of 4 arms of treatment and it's really confusing to try to explain, but I'll do my best ... but that's another post.

Sometimes I forget that he's fighting the greatest battle of his wee little life ...

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.