Day 720

I forgot to add his ANC in the top right screenshot - it was 2.5.

Day 720 of Jaxon's recovery from Acute Lymphoblastic Leukemia. Almost 2 years into this ordeal, I'm still surprised to learn that some people think he's all done and finished his treatments. Not so! He continues with a cocktail of daily, weekly, monthly and every-three-months chemo administrations (oral, IV, spinal) as well as steroids for 5 days each month (plus several days of steroid hang-over). Every month his blood counts are checked to make sure the ALL remains in remission, and to make sure he is receiving the right dosages of chemo. This month his white blood count is a bit higher than preferred, but we suspect that is because he has some symptoms of a viral illness. If he has no cold symptoms and high counts again next month, his chemo dose will likely increase. If all continues to go according to plan, the anticipated end of treatment is mid-June 2017.

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 ...

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.

done with DEX {for now}

DEX, or Dexamethasone, is a cancer fighting steroid. Jaxon had 2.3ml of DEX twice a day for the first 28 days of treatment. We met DEX again for a week at the beginning of August (3.75ml twice a day), and today we finished the second week-long "pulse" (3.75mg twice a day). DEX comes back into the picture again in December when he begins Long-Term Maintenance.

I say 'we' because it's really a joint effort to get him to take the meds. He's supposed to take an antibiotic (Septra) every Fri-Sat-Sun (for the entire 3 year treatment). Since it's been so much work to get him to take the DEX, I delayed the Septra by a few days. He started this week's course of that at bedtime tonight. DEX tablets were 3 pills of varying sizes in the morning and one big one at bedtime. I've learned that the liquid Ranitidine he has had to take with the DEX is actually just Zantac. We got that in tablet form as well and gave 1/4 of a pill with the bedtime DEX. Septra is half a larger pill every morning and evening for 3 days a week, usually on the weekend.

On his last round of DEX and Septra, he stopped tolerating liquid meds. I had to add quite a bit of other things to try disguise the taste and help it go down. It just got to be too much volume that he had to take in, and he started throwing them up right after drinking them, so we've switched to tablets. This has made things so much easier. I poke a hole in a jelly bean with a sharp knife and then shove the pill in. He takes one regular bean for every medicated bean. I've been extra vigilant with teeth brushing as he has 4 known cavities. Sorry to the Dentist, but the Oncologist wins on this one. I'm hoping that we'll eventually be able to transition him to swallowing tabs (maybe inside gel caps) so we can just get it over with! My friend who has a daughter with ALL a little older than Jax told me about this cool little straw - we might order a few of those. I know that in time, he'll eventually learn to swallow pills. The thing I struggle with is that I try to not make little things more difficult than they need to be, since he has to comply with so many "big things" and has no choice or control. I'm okay to try a few gimmicky things to make the transition easier for him (and for me!). Down the road he will have many pills to take, and we just can't be pumping so many jelly beans into him.

Yesterday, the boy ate ALL. DAY. LONG. While he was still eating one thing, he was demanding asking me what he could eat next. Sometimes while I was still preparing the previous request, he'd be placing his order for the next item. I wish I had documented everything he consumed. When I teased him about how he ate all day long he said "Mooooom ... you're giving me medicine that makes me hungry!" It's so strange to be forcing him to take meds that I know are going to radically change his behaviour and demeanour. He doesn't get angry about food so much, but if he doesn't get his way about where we are going and when, what we are planning or even just thinking about planning, what movie or game the boys will watch or play ... watch out! Now that he's had his last dose of DEX, the symptoms will gradually fade over the next few days.

He obsesses over food, but it is often an agonizing decision for him as to what he wants to eat. My suggestions are rarely accepted. Or, he wants one thing, and one thing only - usually something I've run out of or didn't think to stock in the fridge or pantry. Sometimes he thinks he wants something very specific but then when it's prepared and placed before him, he's lost the craving. There's something called "chemo tongue" - the meds change the taste of things. He's eaten a shocking amount of Mr. Noodles. Though I restricted him (and the other boys) to one package a day, we ran out. *gasp*

Yesterday alone, there was french toast (no crust), tomato soup (in the daytime and also in the wee hours of the morning), seaweed flavoured rice crackers, pumpkin pie, beef stroganoff (middle of the night), chunks of cheddar cheese, chunks of garlic sausage (no crust! I peeled the paper off, he just didn't like the outside part), grilled cheese sandwich (no crust, sometime close to midnight), milk, decaf tea with milk and a bit of sugar and plenty of stool softener (it's called PEG - he gets this every day), 8 jelly beans - 4 of them laced with DEX. I know I'm forgetting some. Pizza! He had pizza - no crust, just the toppings.

Today's tally ... before noon:
• One small square of PB&J sandwich, leftover from yesterday (no crust)
• 2 farm fresh eggs, scrambled with grated cheese and ketchup (did not finish)
• 300 ml milk
• Pumpkin pie (store bought, no crust, lots of whip - from a can)
• 200 ml cold water
• 2 seconds later ... "I'm still hungry."
• Nachos (did not finish)
• "While you're making the nachos, what can I eat?"
• Decaf tea with milk and PEG, aka "poo powder"
• "Mommy? I'm hungry."
• Me: "Let's do your medicine beans now so we can get it over with."
• Jax: "Ok. And then right after that I'm going to ask for something to eat."
• 6 jelly beans (3 with meds)
• Handful of cheddar flavoured rice crackers
• 300 ml tea + peg

We've run out of Mr. Noodles so he's persistently hassling me to go buy some. I'm not keen to take him into the store as he is quite fragile right now, feeling downright crummy. His ANC (absolute neutrophil count = immunity) was .38 last Monday, and I will be taking him for peripheral blood work tomorrow to see where he's at. We've been told to expect it to drop right down to nothing. Anything below .50 is considered "critically low", and we want it to be upwards of .75-1.5. Paul and the big boys are gone fishing for the day so maybe we'll see if Oma can go get us some groceries.

With his dropping ANC (due to the 3 doses of DOXO this past month), his energy level has rapidly decreased. He spends most of the day resting or lounging. He's put himself down for a nap in his bed twice this week.

His hair is falling out again, also thanks to the DOXO. Our oncologist said she has never seen anyone keep their hair after DOXO. It will likely be all gone within the next month, maybe sooner. The meds he'll get in the next few weeks also cause severe hair loss. It had started to grow again after he shed quite a bit during the first 6 weeks of treatment, but didn't lose it fully. This time it's just in time for cozy winter hats! I'm thankful for the cooler weather so I don't have to worry so much about him overheating or getting dehydrated. Much easier to keep warm than to cool off.

On Saturday night he started to complain of lower back pain. He was soon in agony, yet didn't want to take any pain meds (morphine) because he'd have to drink it (no tabs of that yet). "Mom, that stuff tastes AWFUL!" He conceded, and slept well until the meds wore off and his hunger woke him up at midnight. He started to have similar pain last night but it didn't get as bad as the night before. I spoke to the oncologist on-call at BCCH and he suspects the pain was likely caused by the DEX. That stuff is no joke!

Today is Day 22 of Delayed Intensification. Next clinic appointment is Monday Sept 8. He and I will stay at Jeneece Place the night before, as the appointment is early and he has to fast for a possible sedated procedure. The planned treatments for this day (Day 29) are count dependent. Blood work is first on the list and if he makes counts (ANC > .75 & Platelets > 75), he'll have an LP (lumbar puncture/spinal tap) to check his cerebral spinal fluid (CSF) for leukemic cells (this is done with every LP and has always been negative). After the fluid is drawn, he'll get more methotrexate injected in his spinal fluid (IT-MTX). If it's a go that day, he'll also begin 4 days in a row of an IV chemo called Cytarabine (ARAC). It will be done in the clinic in Victoria so he and I will stay those 4 nights at Jeneece Place. He'll stay "accessed" so there will only be one poke in his button on the first day, and the needle and short tube will stay in until he's finished the 4 daily doses. That day he'll also start an oral med (Thioguanine or 6-TG) for Days 29-42.  However ... if he doesn't pass his blood test on that day, we'll get a chemo break and try again the following week. We've been told to expect at least a week delay before starting DI Day 29. It is more common to have a delay than to go ahead as planned. Does that make sense? Probably not.

So if Day 29 is on Sept. 8 or 15 ... we'll have a 4 days of IV ARAC, 4 days off, then 4 days IV ARAC again. I'm considering going to Vancouver for the second cycle of ARAC, just for a change of pace and to see friends at RMH and our Doc at BCCH, but I'm not sure yet. My folks will be here for a week or two starting on Sept. 15 so I don't want to be gone for most of their visit (even though I'd be away in Victoria anyway). But if he has to wait a week or two for counts to climb back up, that might not be an issue. We shall see. We hold our plans very loosely around here.

I've rambled long enough. I'll end this with the great news that Paul and the boys did catch a big one! A 15 lb. Spring salmon off the shores of Parksville. When Jax heard they caught one, all he could think or talk about was how much he wanted to eat salmon. It was a few more hours until he got his wish, and in the meantime he had some chocolate chip pancakes. He also wanted some Kraft Dinner right before Paul and the boys got home. I shut that down pretty quick and he accepted my decision. Just barely.

The salmon was really tasty. Looking forward to more meals of that.

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.

Admission: May 7

Jaxon's blood counts kept us all on our toes again today. Docs have been watching his complete blood count closely, trying to sort out what's been going on these past few days. Overall he has been much happier and more comfortable, but a few things have lingered that require attention. The kidney issue seems to have resolved. We're waiting with great anticipation for him to toot and poop. He was given the go-ahead to eat whatever he desired today, so that greatly helped improve his disposition.

One concern with his blood count is his coagulation (clotting) factor. It was extremely high, off the charts, putting him at high risk of bleeding that cannot easily be stopped. With his final lumbar puncture and bone marrow biopsy scheduled for tomorrow, his clotting factor needed to be brought back within normal range. (The higher the number, the longer it will take for his blood to clot.) He was given a transfusion of a blood product called Cryoprecipitate. I don't really know what it is. The expectation was that this transfusion would correct his really high clotting factor. Just a few minutes into the transfusion, he started coughing lightly, and it lasted for several minutes. There are a few things that could cause that and I won't explain everything. The short story is that he seems to have had an allergic reaction to the Cryo - a potential risk for any person receiving any type of donated blood product. He was given Benadryl, the coughing subsided, and the transfusion was started again. He handled the rest of it very well. Blood work came back to show that his coagulation factor is back within (or very close to) the normal range. Earlier today the coagulation factor was at about 105. After the Cryo worked its magic, it came back down to about 26.

His blood pressure has been higher than our nurse is pleased with tonight. The steroid he's been on is known to elevate BP. She is talking to the Doc to see if they want to give him something to bring it down.

As long as there are no further complications overnight, the plan is to have his final procedure in the clinic first thing tomorrow (Thursday) morning. We are scheduled for 8:00, but could be bumped for various reasons.

We are not sure how long we will have to wait for the results of tomorrow's biopsy, but our Top Doc is highly optimistic that it will show no more cancer cells in our boy! We hope and pray that will indeed be the case.

Admission: May 6

• 12:45 pm
Let the boy eat! Our team feels they've come to the most reasonable explanation for Jaxon's recent issues. Though no kidney stone was seen, his symptoms match up to there being one. He may have passed it already, or it is not large enough to have caused pain or blockage. His lower than expected coagulation factor is likely a delayed side effect of the Pegaspargase he received on Day 4. It is known to cause irritation to other organs. So we have seen two separate issues that have inter-mingling symptoms. The dehydration is to be expected, considering these other issues. He's feeling much more chipper today, and was quick to give me his food order ... water, then a PBJ sandwich, then pizza. Doc says no to that so he's starting off with some apple juice, water and yogurt. In about half an hour we'll try some digestive cookies. The bowel issue is likely because his body saw other things happening that took all the attention away from the gut. Now that we have a good idea of what else has been happening, the hope is that the gut issues will resolve as well. He will still be going for a repeat X-ray to check for changes to the irritated portion of his bowel. We are hopeful that things continue to improve so that we can still go ahead with his final clinic procedures on Thursday of this week.

• 2:05 pm
Paul saw our Top Doc (his name is Dr. David Dix, but we call him Lord Business) in the hallway downstairs. He's not convinced it's a stone, but will be in touch with us in the next day or so. Will keep you posted. When I told one of the Oncology Residents that Dix wasn't so sure about the kidney stone, she grinned and said she was looking forward to debating him on that conclusion. I think he'll be stopping by to see us tomorrow.

Dr. Dix' Nurse Clinician, Karen, came by our room this afternoon and we had a good little chat. I love how very personal this Oncology team is. We talked about Jax and the changes coming to the hospital and RMH, and even her retirement. I hope it won't be in the next 3 years! Both Karen and Dr. Dix assured us (separately) that this will likely be just a blip on Jaxon's road to recovery. Some kids sail right through this phase with no complications, some kids need a bit (or a lot) of extra TLC.

• 10:00 pm
Consensus from our medical team is that Jax is likely passing (or has already passed) some crystals (itty bitty kidney stones). A follow-up ultrasound today (first one taken Sunday evening) shows a portion of his large intestine is still irritated, but that there is no blockage. Time and a few gentle laxatives are expected to resolve the buildup of gas and other stuff that is found in large intestines. Nurses can hear movement in his belly. It is not at all unusual for a child's gut to get lazy and take a holiday when the body is dealing with all the other things that come along with chemotherapy. He has been experiencing some uncomfortable gas pains as we wait for things to get moving.

We are hoping to get him up on his feet tomorrow. He's been resting a whole lot this past few week with very little walking. The chemo also causes joint pain, so he is feeling the effects of that in his hips and isn't confident in his strength to walk, even with assistance. We hope to have a visit from the physio team tomorrow for some ideas and encouragement to get him more mobile. Obviously, walking and moving will help with the bowel issues.

Blood and urine culture lab results show no sign of infection.

His blood counts and electrolytes are at satisfactory levels.

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!

Good news on Day 19!

Today is Day 19 of Jaxon's first stage of treatment, called Induction. We were told at the beginning that by Day 29 he should be in remission. On Day 8, a special blood test was taken to check his MRD (Minimum Residual Disease) level, to see how he has responded to treatment so far. We got those results today, and are pleased to report that he is responding very favorably to treatment and Dr. expects complete remission at the end of 29 days. It still means a long (3 year) treatment plan, but it's good news because it shows that he is responding (and not resistant) to the chemo. He is still feeling crummy, as is typical during Induction. Eating and resting lots.

The goal at the end of Induction (May 10) is to see less than 0.01% of disease. The MRD test on Day 8 showed he was at 0.15 (it was 90% @ diagnosis). Our Dr. is confident that the trend will continue, to bring Jaxon to full remission.

This is the expected course of his recovery. We are still looking at a 3 year period of treatment, most intense now and for the next 7 months and lessening in intensity for the remaining 2.5 years.

We are working out the balance of keeping his nausea at bay and making sure his bowels move frequently. We were told to give him anti-nausea meds (Ondansetron) on an as needed basis. Over the past few days we've come to realize that he needs them constantly. We are currently chasing the nausea, and need to get on top of it to keep him most comfortable. 

We're tremendously grateful for the many oncology families we have met either in the hospital, here at Ronald McDonald House (RMH), and through connections with friends and family. Sharing experiences and comparing notes with them has been immeasurably comforting and helpful.

April 25

Our BCCH clinic appointment went well today. 

He received his third dose of Vincristine (VCR). Standard protocol for this phase of treatment (Induction) is four doses of VCR in the first 30 days. Final VCR scheduled for Friday, May 2. 

His counts look good, no need for transfusion. (Thanks to the many of you who are donating blood in honour of our boy!) We learned today that upon diagnosis, his bone marrow contained 90% blast (bad!) cells. Healthy marrow contains less than 5% blasts. No wonder he was feeling crummy! As of today his white blood cell count (WBC) is up, which means the cancer (still called a tumour, though it is not a mass) is reducing. Today's WBC is 1.2, target range is 5-15. 

We return for blood work on Tuesday, late morning.

April 22

An opening became available for us to move into Ronald McDonald House (RMH) so we did just that yesterday! Jax settled in quite nicely and we are enjoying the kind and thorough staff and routines here, and have already met families that we plan to keep in contact with as we continue this journey. Jax was skeptical about a new place but warmed up quickly to the idea. We expect to stay here until the home closes on May 5 for several weeks while they move to their new location. After May 5 we will stay elsewhere until the completion of Jaxon's Induction phase of treatment on May 10. After May 10, our Dr. expects we will be able to return to the Island. Further treatment and appointments on the Island will be in Victoria, and we will have to return to Vancouver for a few days at a time for certain stages of treatment over the next 5 months. This is the current plan, knowing that there could be setbacks or changes at any time. Clinic appointment went well yesterday, his Hgb is holding at 105. Other numbers are low, as is to be expected.

It's in you to give.

Contact Canadian Blood Services

In the past 10 days, Jaxon has required about 4-5 blood transfusions. This essential part of his treatment sent his hemoglobin from rock bottom 40 to a pleasing 105 several days later. I'm not a blood donor yet, but I plan to be as soon as I have some spare time. I know of others who are donating because of Jaxon's story. If you are able, will you be one of them as well?

April 17

Quiet day for us at BCCH. Jaxon's procedure* this morning went well. He's been feeling tired and woozy so has been resting a lot. He had three days of decreasing hgb so they transfused him and he went from 76 on Wed morning to 102 today! Tomorrow we will rest and visit with some special folks. IV chemo on Saturday. We expect to be discharged over the weekend and be back to see our oncologist in the clinic on Tuesday. He and I will be staying with my cousin here in Van for most of the remaining 3 weeks. Pray for his energy to bounce back tomorrow.

*Intrathecal Methotrexate
"Intrathecal" describes the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord. Medicine can be injected into the fluid or a sample of the fluid can be removed for testing. Chemotherapy given intrathecally can kill cancer cells throughout the brain and spinal cord. 

(Jaxon receives IT MTX 3 times in this initial induction phase of treatment as a preventative measure. His spinal fluid showed no signs of cancer at time of diagnosis.)