Monday, December 29, 2014

RMH & BCCH in December

Most of Jaxon's treatment is done at an outpatient clinic in Victoria, a satellite campus of the BCCH Oncology Program. We are required to pay a visit to The Mother Ship (BCCH) once every six months, and also have to be there for any super duper special parts of his treatment protocol. More about that in another post. And so we went in December. Max and Marty had not yet stayed at the new Ronald McDonald House in Vancouver, so they were very eager to go. I didn't mind taking them, as it was a quick trip with a low-key day in the clinic. It certainly was a lot more work to have the older boys there with me, but I'm glad they got to experience it with me and Jax. It also made things much easier for Paul here at home for me to take the boys as it was during the work week. But next time? I'll try to go with just the wee one.

Heading back to the car after finding some snacks inside the ferry terminal.
Enjoying the view from our complimentary State Room on BC Ferries.
Available to Jaxon anytime he travels, thanks to our super great social workers in Vancouver and Victoria.  I think only the Victoria ferries have state rooms, so that's the route we take. So nice to have space to spread out our stuff (Lego building!) and lay down if needed. Sometimes they even give me the key so we can leave the room to get food or go for a walk. But otherwise we have all we need, even a bathroom! I must remember to take bleach wipes onboard with me next time because it's certainly not any cleaner than the rest of the boat. 
Happy boy to FINALLY be at the new RMH!
Pic taken before I knew that sitting on the slide is a no-
no.
RMH Grand Living Room beautifully decorated with fourteen Christmas trees!
One of our favourite clinic nurses sensed that Jax would need a distraction upon entering the procedure room*, so the bubble machine welcomed him for the first time. Good fun while the good sleepy doc snuck some good sleepy milk into Jax's line. I get to stay in the room for his LPs in Victoria, and have several good pictures from previous ones. I plan to post them, with a warning ahead of time for those lightweights who aren't so fond of medical procedure documentation.
*The 30 minutes that Jax spent delaying and trying to avoid getting his port accessed, followed by the hysterics when me and 2 nurses had to just go for it
was a good indication that he was displeased with the goings-on.
He had a visit from physio lady Anne who put him through a whole bunch of tests to check his nerve function in hands, feet, and knees, balance and range of motion on his feet. Vincristine is the medicine that he'll be getting the most of
(has had plenty since the beginning of treatment and will continue monthly through LTM) and it is known to cause neuropathy, to varying degrees.
We soon discovered it was a great day to be at BCCH as the Canucks were there
to visit! Marty and Jax posed with Fin before they chased him down the hall trying to pick a fight with him as he followed the rest of the team upstairs.
 
Max's first selfie! Thanks Fin!
My boys were sort of impressed, and were excited enough to pose for a pic with these guys (Daniel Sedin, Weber, Horvat, Higgins). They each got signed postcards from 12 players! We saw our favourite, Dan Hamhuis, and Jax was friendlier to him this time than when we met him and his wife Sarah at BCCH in May.
Our friend Marek!
We met Marek and his parents in the early days following Jaxon's diagnosis. He has the same diagnosis as Jax, received one day apart. They live in Whitehorse where there is no oncology facility nearby. He and his Mom have been living in Vancouver since April, and are eager to head home in the coming weeks. They will fly to Vancouver for the remainder of his monthly treatments. We're so glad that they were still there when we made the trip over to begin LTM. This time he and Jax were in the clinic at the same time, recovering from their LPs in rooms side by side. He is 3, with the same light brown hair and dark brown eyes as Jax. They look like brothers! Super special friends. He cried when it was time to say goodbye. Feeling thankful that he'll soon be home to rough-house with his own big brothers and sister.
This pic taken after I knew it was a no-no to sit on the slide, but just so cute!
Hard to get a good pic of that boy - always on the move!
Me and Marek's mama, Amanda. I'm so very grateful to have a friend alongside me in this marathon who is going through so much of the same things. Every cancer story is different from all the others, but there are so many commonalities as well. Love you, Lady. Thanks for the socks.
We received free admission via RMH to see the Festival of Lights at
VanDusen Gardens.  
So many lights! It was hard to take pics of the boys
with the poor lighting and they ran the whole time.  (Looks like I should have looked at the website before we went so we could have seen some of the extra indoor activities. SCANDINAVIAN GNOMES! Lego Room of Joy! Shadow puppet show!) It was lovely, and great fun to make some memories with Marek and his Mum (and Grandma!) outside of the hospital and RMH.

Sunday, December 28, 2014

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.

Saturday, December 27, 2014

Happy Birthday, Super Jax!

The boy turned SIX! On December 25th!

We had a very lovely, low-key day.

He was pretty sure he wanted a black forest cake.

I asked if he was really sure, with the cherries in it and all.

He was pretty sure.

I made a black forest cake. It was amazing.

He confessed the next day that he really really really 
doesn't like the cherries in it.

Oma came to help celebrate.

There was cake, balloons, gifts, relaxing, lego building.

We may or may not have an official "party" in the next few weeks.

Where there are parties, there are people.

Where there are people, there are germs.








Wednesday, November 19, 2014

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 ...


Wednesday, October 29, 2014

on learning your child has cancer ...

I learned this morning that the 10-year-old daughter of friends of ours has been diagnosed with Leukemia, discovered after she had some routine bloodwork done yesterday. No family ever deserves news like this - but these folks have had more than their share of heartache in their years together. That's not my story to tell, but my heart has been heavy for B and her family today as they are walking the same hallways and having conversations with the same team of doctors as we did nearly 7 months ago. I told B's mom and dad today that on the day of our diagnosis, I could not fathom ever being at the place where we are now in Jax's treatment. But here we are. No one knows what each family's cancer journey will look like, but I know that this family is well equipped and abundantly supported as they enter these deep waters.  Please pray for B. She also has Down Syndrome, which adds an extra element of complication to her treatment and support. Pray for her mom and dad as they care for B, her two older sisters, and newly adopted toddler brother, who also has special needs that require a tremendous amount of daily care and support.
B's Mom Christie blogs at So Here's Us.

***********************************************
I edited this post to share about Miss B. 
Original post below.
***********************************************

I came across this blog by a fellow oncology mom ... 

As if dealing with a special needs child with cancer, she watches for rockets to fall on her vehicle as she drives him to his appointments.

Have a look at her blog.

I found this incredible description of the day her son was diagnosed with Leukemia:

"And the water rushed all around me
and sucked all the air out of the room."

I am sure that this feeling is shared by other parents of children with life changing, life threatening diagnoses. It is understood by anyone who hears devastating news about a loved one, no matter what age or stage of life.

Monday, October 20, 2014

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. 

Monday, October 13, 2014

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.

Thanksgiving

While we reflect and celebrate how far we've come since the devastating news of Jaxon's diagnosis, we are also keenly more aware now than ever, about the tragedies many families are facing. Each childhood cancer experience is different for different kids and their families. Some have more optimistic diagnostic outcomes than others. We got one of the good ones. It's still really terrible for us but it could be oh so very much worse. 

My friend Pam (mom to Audrey) wrote these words this weekend, and I want to share (with permission) as it's such an important reminder.


"Thanksgiving Weekend ... while I won't be diminishing the blessings we are so thankful for, others will be on my heart and mind this weekend. Please think of and pray for families who have learned devastating news in the past couple of weeks. Pray for those facing the loss of a child. Pray for those who have received new diagnoses. Pray for those who are experiencing a first Thanksgiving without a child.
 Love to all who this applies to ...  you are not forgotten. ♡"

Sunday, October 12, 2014

Sole Sisters Victoria

There is a group of about 100 ladies who gather together in Victoria on most Tuesday nights. They call themselves the Sole Sisters. Click the link to see a video (from 2011) about the main goal of the group. Another part of what they do is something called Quarters for Cubs. Each week, every lady who attends the running clinic brings a quarter for the Cub Jar. Well guess who was chosen to be the Cub for their most recent 17-week clinic? Mr. Jaxon!

Mena, the director of Sole Sisters, is the mom of four boys. Her third boy, Jack, was diagnosed with ALL at the same age as our Jaxon. Her Jack finished his treatment 2 years ago (he's now about 10 years old.) Because of Mena's connection with the Pediatric Oncology program at Victoria General, she hears about other families facing similar circumstances. That's how she heard about our family.

Mena texted me on Friday of the week before last to say that she hoped we could make it to the beginning part of their Sole Sisters gathering on the following Tuesday (Oct. 7). All I could think of at that point was that I would already be making 4 trips in 2 weeks to Victoria for Jaxon's blood work checks, and adding in another drive down seemed daunting. She insisted that we do our very best to be there. Honestly, I thought they had a lot longer to go with their running clinic and it wasn't time for any special presentation to little Cub, Jaxon. She was really persistent, so I said we'd be there. Paul agreed to come down with us, and Marty eventually decided to come as well, despite the LOOOOONG drive to get there. Small town kids - spoiled by short drives to get to where we need to go. Max stayed behind with Oma.

We found our way to the gym where they meet, and sat off the the side, doing our best to keep an imaginary bubble around Jax to protect him from germs. His ANC was really really low so we had to be extra careful. 



I soon realized that this was the final night of this particular running clinic, and we were there to collect some cash! Mena gave a very sweet introduction, and then another lady who was also collecting Quarters for Cubs gave a presentation as well. She has a small fit club that meets elsewhere, but still wanted to contribute. She shared a very moving story about why she does it, and presented us with about $100. Mena then announced that the 100-ish ladies had collected, raised, donated ... $1100 in 17 weeks! She then added the cash that had been given that evening - over $100. There was not just quarters in that bucket, let me tell you! Loonies, toonies, 5s, 10s, 20s. In total, we were blessed with $1353.99. What a gift! They even gave me a hot pink Sole Sisters tank top. Woop woop! A nice surprise was meeting two ladies who have connections to Imadene! They both knew who we were and came to chat with us. I recognized them both but had not met them officially until then.

I posted this thank-you note on the Sole Sisters facebook page:
Thank you all so very much for your contributions to the Quarters for Cubs, and for focusing your thoughts on Jaxon's battle with Leukemia as you gather each week to walk and run. Our family has been incredibly supported through these past 6 months, and your kindness to us over these weeks has added to that blessing. We are honoured to have had this special role in your "tribe". I love what you are doing together and for families like ours, and I really do wish there was a group like this closer to where I live! What a gift! Again, many many thanks.

Saturday, October 11, 2014

#CCAM {Childhood Cancer Awareness Month}

One last post about Childhood Cancer Awareness Month ... it's an easy read. Much of what the author describes is similar to our experience with Jaxon's diagnosis. Our Dr. also had tears in her eyes as she told us the results of his blood and bone marrow biopsy and we joined the "club" that no one wants to be a part of. Despite not wanting to be "one of them", I'm so thankful for the other kids and their families who we have met along the way. Our lives are richer because of them.

Don't just feel sorry for us ... help us fight this thing and its effects on the lives of these precious kids!

Give of your time, finances, a meal, your hair, your blood.


How To Help (article)

Local organizations that help families facing childhood cancer include:

Balding for Dollars - an extension and direct supporter of the Oncology Program and Patients at BCCH. My dear friend Charis and I put together a little fundraiser by selling Jamberry Nails and with the help of several other friends, raised $100 for Balding for Dollars. Thank you Charis, and the rest of the ladies for making that happen!

Ronald McDonald House BC - our home away from home when we need to travel to BCCH.

Jeneece Place! - our frequently visited home away from home. The staff tell me we don't feel like guests anymore, it's that kind of a homey feeling for us. Jax and I are looking forward to Thanksgiving dinner tomorrow (Monday) with Jeneece and her family. We'll be there overnight as he has an early morning appointment on Tuesday that he has to fast for. Early mornings are hard enough, even worse to have to drive all that way on and empty tummy.

Friday, October 10, 2014

six months

In my mind I think about Diagnosis Day as Four-Ten-Fourteen. That was almost the name of this blog. I have a music playlist by that name instead.

April 10, 2014.

6 months ago today. I could never, not ever, have imagined what my little boy, our family (immediate and extended), and our friends (old and new) would experience together over these past six months. Thank you, thank you so much - to all who have supported us through this in innumerable ways. Our lives are richer because of you. xo

Paul wrote some thoughts about another significant April 10th in his life. 
Do read it.

Monday, October 6, 2014

Nailed it!

This high flyer is doing great! 

His immunity is still low but his energy is not low or lacking!

Hard to believe he's just completed 
the second most gruelling 
phase of his treatment.

Tuesday, September 30, 2014

Laying low on DI Day 44

We had a quiet morning at home after a long clinic day with Jaxon yesterday. He and I went for his planned visit to check his counts and, as expected, he required a red blood cell transfusion. His HGB was 80, the point when transfusion is considered. We could have waited until Friday to transfuse, but we decided to go ahead with it yesterday. 4 hours well spent - his lips are pink again! 

Jax got this 276.1 ml donation of blood yesterday.
It is A+ Packed Red Cells, all from one donor.
He might need more on Friday. Or perhaps platelets.
Canadian Blood Services is reporting a critical 
nation-wide
shortage of blood products, particularly types A and 0.
If you are able ... Please give!
Canadian Blood Services
"Someone in Canada needs blood every minute of every day and CBS regularly collects 17,000 units of blood per week. The agency immediately needs 7,500 blood donations on top of the regular weekly totals to replenish the inventory."  Read more ...
Also as expected, his ANC (immunity) continues to decline as a result of the chemo from the past two weeks. He's now at a critical low of .23 ("normal" is 1.5 and above). As much as we wanted to go take part in the Tour de Rock Cops for Cancer event in our town today, we decided to stay home as the risk of infection from being around others is just too great. We only heard about the event yesterday evening, so it was too late to make any arrangements. I'm going to look into ways we can be involved with the Tour next year. 


Riders between Ucluelet and Nanaimo, Sunday Sept. 28/14
Photo swiped from Cops for Cancer BC Facebook page.

Our buddy Lucas got to take in the festivities in Nanaimo. We are 
so very thankful that he's finished treatment, feeling good and lovin' life!
{Lucas and his lady friend.}
Photo swiped from TC article linked above.

We {heart} Jeneece Place!

photo via jeneeceplace.org
Since returning from our 6-week stint of treatment at BCCH in Vancouver at the end of May, Jaxon and I (as well as Paul and the other boys a few times) have stayed at Jeneece Place in Victoria at least 10 times. We're honoured that they've written a little blog post about our recent visits there. We feel very much at home there and the staff and volunteers show their care for our whole family in many ways. We always look forward to staying there when Jax has an early morning clinic appointment, or several days in a row of treatment.

bald is beautiful

bald is beautiful.

God made

only so many

perfect heads

... the rest

He covered

with hair.

{Jax and Grandpa - spinning a coin.}

Friday, September 26, 2014

end of ARAC

Nearing the end of Delayed Intensification!

As expected, Jaxon's healthy blood cells took a pummelling along with the big bad leukemia cells that the last two weeks of chemo was targeting.

As of Thursday:
ANC - 0.37 (marked on the lab report as "critically low")
HGB - 88 (down from 100 three days prior)
PLTs - 165

As soon as we arrived at clinic on Thursday morning, our Nurse Clinician (Anne xo) said that he looked much paler that day and that his HGB is definitely declining. Though 88 is low, and it took quite a jump from Monday's CBC (complete blood count), it wasn't so low that an immediate transfusion would be required. He is scheduled for a red blood cell transfusion first thing on Monday morning. A CBC prior to transfusion will determine if he will need a platelet transfusion as well.

The ANC is expected to drop to nil. For the next two weeks we need to be hyper-vigilant in reducing his interaction with other people. Even if he is in close proximity to someone who is not symptomatically sick - they could still be ill with something and pass it on. It's a tricky, slippery slope! After about two weeks, his counts should begin to recover and we can go back to just being totally paranoid about germ transmission.

We'll be going to clinic on Monday and Friday for the next two weeks to keep an eye on his counts. Remarkably, even with his super low counts right now, he's been really energetic and feeling good. He's a bit crabby but can we really blame him for that?!

We hope his counts will be good enough to begin Interim Maintenance 2 on Tuesday, October 14.

Psalm 91:4


Wednesday, September 24, 2014

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.











Sunday, September 14, 2014

Let's try this again.

Tomorrow is attempt #2 for starting the second half of DI. Day 29 can only happen when ANC and platelets reach .75 and 75, respectively. Last Monday he was too low at only .30 ANC. It was to be expected as the DOXO can stay in his system for 3-4 weeks. 

The chemo vacation was really nice. He's just now coming out of the steroid hangover, two weeks after his last dose. His mood is stabilizing and he's making reasonable, though still frequent, food requests. This round of steroids also brought a new side effect - the giggles! Uncontrollable and contagious. Even a bit irritating to a particular brother 2.5 years older than him. It's been pretty funny, and a nice break from the constant crabby-cakes. He was still plenty mean, nasty and unreasonable at times of this last round but the breaks of glee were really nice. I'll post a video later of some recent brotherly hilarity. 

I gave him a buzz cut last night, likely the last one for a loooong time. His hair has shed much more than it did during the first few months. It will all be gone soon. He was getting itchy often from the hair falling out and in a fleeting moment of willingness, he agreed to a cut. Hopefully now we can finally get rid of the cradle cap he's had all his life. 

We are now at Jeneece Place in Victoria, ready for tomorrow's appointment for blood work, hoping chemo this week is a go. If it is, he'll have an LP (IT-MTX) and then IV-ARAC tomorrow, then 3 days of IV-ARAC. 3 days OFF then back to Vic for another 4 straight days of IV-ARAC.