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.

S I X T E E N

This number is significant today for a few reasons. 

It's a new year - 2016. Hard to believe that 2015 has already passed us by. So many emotions as we continued on our path through cancer-land, and the new people we met and stories we heard along the way. This community of parents and children is unlike any other I have known. I am honoured to know these families and to share in their victories and heartbreaks.

I realize it's been a long time since I've posted any actual updates. I guess the main reason for that is that everything is going according to the plan! Jaxon continues to have monthly appointments. I've made a blurb on the side bar to describe what his current treatment protocol dictates.

In November Jax had his S I X T E E N T H lumbar puncture (spinal tap) under sedation. If everything continues to go according to the plan and protocol, he will have about 6 more before the anticipated end of his treatment in June 2017. We are well aware that everything going according to the plan is something we should not hold onto too tightly. 

We have now been in Long-Term Maintenance for just over one year, approaching Day 57 of Cycle 5. While much of the time we carry on with regular life and it could appear as though he is "cancer-free", that is not the whole picture. We are ever vigilant to watch out for potential exposures to illness. What is a minor, common, viral or bacterial infection for a child with a healthy immune system ... can rapidly become dangerous for someone like Jax who is immune-compromised. 

The dosages of the oral chemo he gets every day (and extra on Thursdays) are calculated based on his absolute neutrophil count (ANC). They want his ANC to stay between 0.5 and 1.5. Since beginning LTM in Dec. 2014 his ANC has stayed perfectly where they want it. At his last appointment in December, it was elevated above 1.5 so he got a minor increase of his Thursday chemo (methotrexate). He was also at the end of a viral cough/cold, so that could explain his elevated ANC. Since he had been hovering close to 1.5 for several months and then jumped to 2.3, they decided to see how he handles an increase. At his appointment on January 6th we'll find out if the dosage will stay the same or will be adjusted. Some kids run really high ANC all the time and are constantly seeing meds increase, some run really low and are on low percentages of meds. If the standard dose is 100%, some will get closer to 150% and some only 10%. Each kid is different, and the treatment protocol is designed to treat each patient according to their blood counts. He takes his 6MP first thing in the morning, and then has to wait one hour before he can eat or drink anything other than clear fluids. Some days, the wait is easier than others. 

Dex. Ooooooohhhh, Dex. 
Steroids are a powerful cancer fighter. I don't know why or how they work, but they do. Younger kids in cancer treatment take dexamethasone. Older kids and those who don't handle Dex well take Prednisone. They are taken for varying stretches of time all through treatment. Jax had 28 days at the very beginning, 2 stretches of 7 days (with 7 days off in between) in the most intense part of his treatment, and now takes them 5 days every month. Along with Dex comes mood swings, hunger, anger, hunger + anger = HANGER (it's a thing), agitation, short fuse, food cravings and aversions ... etc. The side effects are the most intense while he's taking the meds, and they can last up to a week afterwards. Even when he's not 'under the influence', I see some effects. He often tells me "I just don't know what to DO!" He said once "I wish I could go back to before I had cancer because I used to always know what to do and now I don't know what to do!" I think it's a restlessness and that's the best way he knows to explain it. Knowing he's hungry but not knowing what to eat. Fixating on something to eat but then not wanting it after he finally gets it. It's a tricky balance to navigate his mood swings, knowing that he is battling a chemical force. We work hard to extend grace while at the same time, ensuring he doesn't learn behaviours and carry them into his regular life. Roid Rage is no joke, and it has a mighty impact on many days of our life. 10-14 days of the month ... we tread lightly.

I found this perfectly worded quote online:

We still have to pay close attention to his body temperature. If he spikes a fever over 38.5* we need to get to the hospital immediately to begin IV antibiotics and find out if a bacterial infection is causing the fever. He could go septic very quickly if there is an infection in his port / line / bloodstream. 

I don't think very much about his monthly bloodwork until we get close to his appointment day. I don't dwell on the possibility of relapse, but as any oncology parent will tell you, the nagging thought is never far away. Remission is a wonderful place to be, but it can go sideways at any time. We remain hopeful that his body will continue to respond well to the treatment with minimal long-term side effects. 

At our appointment at BCCH in December he had an evaluation with an Occupational Therapist. He is part of a study group that is monitoring the effects of Vincristine, the IV chemo he gets every month. I don't have the results of her findings yet. He did the same tests after the first month of treatment.  She was short on time so couldn't complete all the exercises, but I'm hoping we can get that done when we go next time.

She was wearing protective gear because he had a cough, and she didn't want to pick anything up and pass it on to other patients and staff. It was the very end of the cough and no one was really concerned he was contagious, but the precautions must be taken.

It was lovely to be at RMH just before Christmas. The Grand Living Room is lined with about a dozen fully thematically decorated trees. The second night we were there, RMH had arranged for a bus to take families to Canyon Lights at Capilano Suspension Bridge. We had a great time, despite the rain. The ride through the city in the big, tall, fancy charter bus was probably just as exciting for my little country bumpkins.

I got to deliver some soft cozy hats made by my friend Jenny and her grade 4 students. Sweet Samantha picked one for herself and had a hard time deciding which of her many friends to give the others to. Jenny just gave me another bag full of hats to share around. She had made one for Jax when he was first diagnosed and it was such a perfect gift. She actually sent two for him in different sizes. We kept one and gave the other to Kaynan, the little guy we shared a room with our very first night at BCCH. 

Jax and Marek are 3 years apart in age but have a special bond as they were both diagnosed with leukemia on the very same day. We met in the halls of 3B. His Mama Amanda holds a very special place in my heart and we keep close tabs on how each other and our boys are doing. The boys follow the exact same treatment schedule. They travel to BCCH/RMH every month from their home in Whitehorse. We see them every six months when we go to our required appointments at BCCH. It should be noted that it's faster for them to drive to the airport, fly to YVR, drive to RMH ... than it is for us to drive to the ferry, cross the water and drive to RMH. 

Intermittently over the past year, Jax has had signs of blood in his urine. Just a few streaks one time and a slight pink tinge half a dozen other times. It's always been just once and then all is normal. No pain, no fever associated with the blood. Way back in the first month of his treatment, it was thought he might have a kidney stone, but nothing has ever been definite. Ultrasounds and x-rays have been inconclusive. Because of this he has had a few nephrology (kidney) and urology appointments both in Victoria and at BCCH. Again, all very mysterious as to what could be causing these random episodes. His kidneys seem to be happy and healthy with no lumps or bumps or kinks or cracks. We expect to just wait and see if any more symptoms occur and his team of docs will decide where to go from there. 

The wait to see the nephrologist was excruciatingly lengthy. 90 minutes after our appointment time, we met this lovely gal from Sydney, Australia. She's a resident, or medical student, or something. Can't remember. She went over his history with me and gave him a thorough once-over. Once she and the top doc looked at the ultrasound pics from the day before and reviewed his urine samples ... they sent us on our way. Poor bubs was super hungry as I let him sleep too long and he had that one-hour wait before he could eat. I had only brought a few snacks and the Dex was talking to him about ALL THE THINGS he wanted to eat. I wish I could remember this lady's name, she was great with him. She couldn't believe how strong he was, beating her twice in an arm wrestle. He could believe it.

This is my friend Sondra and her boy, Lucas. He is S I X T E E N. 

He was diagnosed with Leukemia this week. My heart aches for this dear family as their lives have taken this unexpected and frightening turn. I pray, with hope, that he responds well to treatment and can get back to the business of being 16 sooner than he could have thought possible after such an upheaval. They face the same three years of treatment that we are in the midst of (some different medicines because he is older), but his prognosis is very good. 

LTM Cycle #1 nearly done!

We are nearing the end of the first 85-day cycle of Long Term Maintenance. Only about 10 more of those to go. 10 more sets of 85 days. No biggie, right?

LTM Cycle 2, Day 1 will be Wednesday March 4. It will begin with an LP (lumbar puncture, aka spinal tap) to check his spinal fluid for cancer cells and to inject chemo into his spine, to kill any cells that dare show their ugly faces. He'll also get his regular monthly IV chemo (1.2 mg of Vincristine) and that evening will start the infamous steroid week. Again. More on that later.

As we began LTM, we were warned that it might take a few weeks/months/cycles to get the dosage for his at-home meds sorted out. Some kids tolerate 100% of the recommended dose. Some kids get bumped down to 3/4, 1/2, 1/4 ... I've heard of one patient who is at 12% of the protocol dose, because that's how much the child's system can handle and still keep blood counts within the magical window that makes oncologists happy. (ANC between 0.75 - 1.5.) If the ANC is too low, the kiddo is getting too much daily/weekly chemo. If ANC is too high, the kiddo needs more daily/weekly chemo to suppress the marrow enough to actively seek and destroy any remaining (or returning) leukemic cells. Jaxon's counts were great for the first check-up of this cycle. On the second check-up, his ANC had dropped to 0.64. Not yet low enough to adjust his daily/weekly chemo dosage, but low enough to watch closely for a few weeks. That day (Feb 4) he began his monthly 5-day stint of steroids (Dex). Dex is known to artificially (but still effectively) elevate the ANC, and the rest of the blood counts as well. The 0.64 result could have meant that he was brewing a virus like a cold, or could have meant that his body decided that the 100% dose of the daily/weekly chemo was too much. The plan was to check counts again in one week and see where they were at. The expectation was that they should be significantly elevated, as usually happens during Dex week. If they were still low, then something suspicious might be going on. I took him for counts on Feb. 10 and indeed, his ANC jumped quite a bit to 2.03. He also started getting a bit sniffly/sneezy/coughy that day - indicative that he indeed had been brewing a virus but the Dex had suppressed the symptoms. Oncologist was happy that ANC did rise with Dex, but still wanted to see where it would settle at after Dex had worn off. Today we went for yet another arm poke and results showed that his ANC is at exactly 0.75. Onc is happy with that, and we won't need to check next week. Two weeks from now will be regularly scheduled check-up (LP + IV Chemo).

If his ANC had still been low, we would have stopped all the at-home daily/weekly chemo until ... I don't know when. It's called a "chemo hold". Because of the clinical trial that he is on, once his ANC reached the minimum level, he would have been started back at a reduced dose of the protocol standard, and then watched to see how his body was tolerating it. For many kids, this up and down takes a long time and lots of bloodwork to get sorted out. The monthly IV chemo and the 5-days-a-month-steroid would continue, no matter what his counts are doing.

There's also something peculiar going on with his kidneys. Way back in May at the end of Induction, there was suspicion of a kidney stone as he had some crystals in his urine and some intense lower back pain. X-rays and ultrasounds showed happy kidneys and urinary system so we left it at that. He had one or two nights of intense lower back pain in August/September, but that could have been from the craziness of all the meds he had during DI at that time. In November and December he had a few pink pees (one with blood streaks), indicating that he may be passing a kidney stone. Pee samples were taken and he showed some indicators of possible kidney stones, but nothing definitive. ONC wanted to have another ultrasound to see if any stones might be visible. January 28 he had an u/s and it did show a 3mm stone. In-depth kidney analysis (via blood sample) showed some low numbers for something that I forget what it's called. It seemed "odd" to the ONC, but not concerning, but worthy of follow-up. She has been in touch with the nephrology department at BCCH to see what to do about the oddity. Special urine sample was sent to BCCH on Feb 4 but we learned yesterday that the sample was of insufficient volume, so it will be redone at our appointment in two weeks. Until then, we work very hard to make sure he gets a minimum 1600 mls of fluids each and every day. Our Onc and the nephrology folks at BCCH would like to find out what is causing him to retain excess calcium and create stones. He could be developing stones that usually dissolve, but this one got a bit bigger. The plan to deal with the stones would be to adjust his diet and continue pushing lots of fluids to help his kidneys flush properly. His symptoms are very sporadic so it's not an alarming or urgent matter, but not one that should be ignored.

Other than all of that business ... he seems the picture of health.  He's full of energy, constantly on the move, making us laugh and charming all the ladies. He seems to be over the virus that popped up last week, ending it off with a two hour nap on Sunday morning. He woke up around 8:30, took his meds, and headed right back to bed with a headache. Of course that sent my head spinning for whatever could be causing him discomfort, but he woke up happy and hungry as ever. I spent extra time taking his temp and frequently touching his forehead, watching for signs of fever. Thankfully, none!

The effects of the Dex are a funny thing. (Long-term side effects of Dex are not funny at all, but we'll deal with those if and when they come.) While on Dex and for several days to a week following, he has very little control over his temper. 'Roid Rage' really is a thing, this I know for sure! His hunger becomes insatiable. He wants something all the time. He either knows exactly what he wants and who shall prepare it and how it shall be served and who is allowed in the room while he eats it and who is allowed to watch him eat it ... or he has no idea what he wants. For him the not knowing what to eat is agonizing! For me, I'm not sure which is more tiring - the constant short-order cooking to keep up with his cravings or trying to come up with something, anything that might possibly, even remotely appeal to him. While the temper and hunger are most intense for about 10 days of the month, I notice that he also struggles with anger while not "under the influence". It becomes a learned behaviour that we need to curb when we know that the Dex is not immediately to blame. The hunger thing ... I dunno. He's super hungry on Dex, and just regular-old-really-hungry the other 20 days of the month.

Watching traffic with brother and friend.

* melt * 

Ice skating lessons with brother Marty!
He's also signed up for T-ball, to start in April.

He counted them ... at least 28, I think. 

Playdough pizza. Play imitates life. So hungry, all the time!

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. 

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.

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.

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.

The Roadmaps - DI & IM2

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

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

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

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

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

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

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

IV VCR (Vincristine)

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

Day 4:

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

Days 1-7:

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

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

Day 8:

IV VCR

IV DOXO

Day 15:

IV VCR

IV DOXO

Days 15-21:

Oral DEX

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

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

Day 29: *count dependant - ANC > 0.75 & Plts > 75 *

IT MTX (sedated)

IV CPM (Cyclophosphamide)

IV ARAC (Cytarabine)

Days 30-32 & 36-39

IV ARAC

Days 29-42

Oral TG (Thioguanine)

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

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

Day 11
IV VCR
IV MTX

Day 21
IV VCR
IV MTX

Day 31
IT MTX (sedated)
IV VCR
IV MTX

Day 41
IV VCR
IV MTX

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

The Roadmaps - Induction to IM1

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

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

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

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

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

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

Day 4 - April 15

IV Pegaspargase (PEG-ASP)

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

IV VCR

Methotrexate (IT MTX - sedated, injected into CSF)

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

Day 15 - April 25

IV VCR

Day 22 - May 2

IV VCR

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

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

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

Day 29 - May 8

Under sedation:

IT MTX

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

No further bone marrow testing will be required.

Consolidation (4 weeks, May 15-June 11)

Day 1 - May 15

IV VCR

IT MTX (sedated)

Day 8 - May 22

IT MTX (sedated)

Day 15 - May 28

IT MTX (sedated)

Days 1-28

Oral Mercaptopurine (6-MP)

Interim Maintenance 1  (IM1) 56 days began June 11

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

Day 1 - June 11

IV VCR

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

He began with 70 mg.)

Day 11 - June 20

IV VCR
IV MTX - 110 mg

Day 21 - July 2

IV VCR

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

Day 31 - July 14

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

Day 41 - July 23rd

IV VCR

IV MTX - 183 mg

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

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