The Roadmaps - Induction to IM1

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

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

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

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

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

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

Day 4 - April 15

IV Pegaspargase (PEG-ASP)

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

IV VCR

Methotrexate (IT MTX - sedated, injected into CSF)

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

Day 15 - April 25

IV VCR

Day 22 - May 2

IV VCR

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

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

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

Day 29 - May 8

Under sedation:

IT MTX

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

No further bone marrow testing will be required.

Consolidation (4 weeks, May 15-June 11)

Day 1 - May 15

IV VCR

IT MTX (sedated)

Day 8 - May 22

IT MTX (sedated)

Day 15 - May 28

IT MTX (sedated)

Days 1-28

Oral Mercaptopurine (6-MP)

Interim Maintenance 1  (IM1) 56 days began June 11

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

Day 1 - June 11

IV VCR

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

He began with 70 mg.)

Day 11 - June 20

IV VCR
IV MTX - 110 mg

Day 21 - July 2

IV VCR

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

Day 31 - July 14

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

Day 41 - July 23rd

IV VCR

IV MTX - 183 mg

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

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

cut it down

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

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

REMISSION!

It was right around suppertime, exactly 4 weeks ago, that we were given the news that Jaxon has ALL. 

Around suppertime today, we were told that Jaxon has achieved complete remission!

My facebook post:
Complete. Remission. Achieved!

From Paul:
Bone Marrow results are back ... Zero. Negative. None. Gone. Bye-bye.
In other words, no traces of Leukemia present and we are onto phase two of the process. Can I get an AMEN People!!!

We still have a very long road ahead. The battle has really just begun. The treatment over these past four weeks, the Induction phase, has done as it was designed and expected to do - to eradicate the Leukemia from his cells. We will soon begin the next phase, called Consolidation. We will learn more about it from our Oncology team over the next few days. 

Other really big news of the day is that Jax finally got out some air and other stuff that has been trapped in his lazy gut. Docs have been watching his abdomen closely, as it has been causing him great discomfort and has often looked distended. He went for a third x-ray of his belly today. The scan showed that he had a considerable amount of air, and though it wasn't clearly seen on the scan, it is believed that he has some impacted stool. I'll spare you the details. We know that his bowels are working at a basic level, but he won't be discharged until his poops normalize and the cramping/bloating subsides. He's had some pain again when he pees. They are still working on the theory that there has been some injury to his kidneys. A combination of the dehydration and a suspected stone or crystals. Both the pee and poop issues are expected to resolve on their own. After the results of the x-ray came back late this afternoon, there was talk of him getting an NG tube to alleviate the pressure on his gut. He must have gathered all the details he needed to know about that as shortly after he spent a long and very successful time upon the throne. Who can tell me why all the toilets in this children's hospital are built for adults? So tall and imposing. Horseshoe shaped seat. My boy's little bum and chicken legs just don't do well on such a monstrosity. PZ went and bought a cheap training potty. It sits on the floor beside his bed so we don't have to get him, two supporting adults, and his IV pole into the tiny bathroom with the giant toilet. In the training potty, he can have his feet on the floor and sit comfortably. There was added complexity this evening when docs ordered a urine analysis (to be caught midstream, thank you very much) and a stool sample. They must not be mixed. We rigged up a system on the big toilet, with the removable seat from the training potty.  The nurse was very impressed, and our efforts were "rewarded". He has been returned to NPO (no food or drink by mouth) status, though if he's really hungry or really thirsty, he can have some clear fluids. This is to ensure that the gut continues to awaken and work its magic.

Our sweet nurse Marina just came in to give me the results of the Electrolyte and Metabolite portion of his blood work from this evening. Everything is as it should be, no "flags" to show that any of the levels are out of the normal range. He could still be passing crystals or sediment, but the numbers show that his kidneys are functioning perfectly. 

I don't really want to end this post talking about bodily fluids ...

The cancer is gone. Now, let's keep it that way.

Thank you, Loving Heavenly Father. Our helper, our healer, our hope.

Admission: May 4-5

After we caught our breath from the scary time in the ER, we were admitted to the Oncology ward. One of our nurses from our first admission came to the ER to take us upstairs. It was a long tiring night with hardly any sleep. Jax was monitored very closely, vitals taken every hour. He was hooked onto a machine to monitor his heart rate, saturation, and respirations. His respiration levels dropped frequently, which was concerning because it meant he was not breathing deeply. Our clever nurse, Gino (The Filipino) figured out that it was because Jax had to pee that he was taking shallow breaths. Once he agreed to try peeing, his respirations improved. All night, Gino came in every hour (or more frequently) to check his vitals, including neurological tests. I don't remember what the reason for the neuro tests was (checking pupil dilation, following basic instructions, answering basic questions) ... something about his kidneys or pancreas or liver being in a bit of a shock, which can lead to seizures and other issues in the brain.


Here's the update I posted on FB tonight ...

We've had a quiet day, but also a bit of excitement. Our Drs. are a bit puzzled by how Jax is feeling (very sleepy), and what the numbers on his blood work say is going on inside. Ultrasound and x-rays show some irritation to a portion of his bowel, one kidney and ureter. They are not sure if these were caused by his severe dehydration, or if there is something underlying that caused those irritations, which started the trend toward dehydration. If he has an underlying infection, his gut could have "gone on strike" to allow the body to focus on the greater issue. All his other major organs look well and are doing what they should. There is the possibility of a urinary tract infection (already being treated with antibiotics as a precaution) or a kidney stone. A stone was not seen on the u/s, but could still be there. We are in a bit of a "wait-and-see" situation. We expect to have lab results tomorrow from blood and urine cultures that were taken this time last night. Our Dr. is curious (maybe a bit cautious, not yet fully concerned) about what might be causing declines in certain parts of his blood and electrolyte levels. He is being watched carefully. After a tense day, we are looking forward to a restful night sleep and hopefully more clarity tomorrow as to what is going on. He is still not allowed any food or drink but is handling that remarkably well. He was allowed some ice chips with his evening meds. The IV fluids help to keep his thirst quenched. Dr assured us that he is in a much better condition today that what he was in when we brought him here yesterday.

He is sleeping soundly now. I had been snuggling with him so he could play with my hair but I got up to get a few things settled. In the time I was up, he took over my pillow that I left on his bed. He looks pretty darn cozy. 

Standard course of treatment

At this stage in Jaxon's treatment, all indications are that he will follow this protocol, understanding that there may be delays or complications that could arise over the 3 year period.

About treatment, from the Children's Oncology Group website: 

(no longer available online - I'll have to find a new link. RZ 20-Apr-2025)

ALL is a cancer of the blood, so treatment is systemic, meaning it affects the entire body. At the time of diagnosis, the healthcare team will insert a central line to provide treatment.

Chemotherapy is the mainstay of treatment.

• Induction:
 The first phase of treatment usually lasts four weeks. Children receive three or four drugs by mouth, intravenously (into a vein), or into the spinal fluid (intrathecal delivery). The combination of drugs depends upon the leukemia factors as above. The goal of this phase is to kill the leukemia cells and allow normal blood cells to return.

A bone marrow aspirate is performed at the end of this phase. The bone marrow is examined under a microscope, and is expected to show only normal cells. This is called remission. This does not mean that the child is cured, because without further treatment the disease will return. However, it is a very important first step on the road towards being cured. Nearly 98 of every 100 children with ALL enter remission at the end of the first month of treatment. Other tests (such as minimal residual disease) may be performed on the bone marrow and may be more sensitive at finding leukemia cells than looking under a microscope.

• Consolidation:
 The second phase of treatment lasts from 12-16 weeks. Different drugs from those used during Induction are given by mouth and intravenously.

The purpose of the consolidation phase is to kill leukemia cells that may remain after the drugs used in induction. Another main focus is on treating and preventing the growth of leukemia cells within the central nervous system (CNS prophylaxis). To accomplish this, spinal taps with intrathecal chemotherapy (directly into the spinal fluid) are performed weekly. For certain types of leukemia, or if leukemia cells were present in the spinal fluid at the time of diagnosis, radiation therapy may be given to the brain and the spinal column during this phase. In most cases, part of the Consolidation phase will include treatment with the chemotherapy drug methotrexate. Methotrexate is given intravenously, either at lower doses in the clinic or at higher doses that require a 2-3 day stay in the hospital.

• Delayed intensification:
 This 8-week phase of treatment includes medicines similar to those given in Induction and Consolidation. This has been shown to be helpful in preventing leukemia from returning. The exact timing of the doses and the specific drugs used depend upon the individual characteristics of a particular child’s disease.

• Maintenance:
 The final phase of treatment lasts two or three years. Maintenance is much less intensive than the previous treatment and consists mostly of oral medications given at home. There are also intermittent intravenous and intrathecal medications given throughout this phase.

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 24

My little son woke up at 7:00 am and chirped the words that every mother loves to hear ... "Mom, I really really want some cake." He is on a heavy dose of a steroid called Dexamethasone (DEX) which is a major cancer fighter. It also causes intense cravings and makes kids obsess over food. I said no to cake for breakfast and 15 minutes later we agreed on some (low sodium) chips with sour cream. That will be his breakfast appetizer. A proper breakfast will be discussed later. He had a really good day yesterday and is in fine form this morning so far. We go for his next clinic visit at BCCH tomorrow morning for blood work, chemo #3 and check-up with our oncology team.

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?

Discharged!

We have our walking papers! Packing up and heading to my cousin's, not far from here! Jax might shed his first tears since this all began when we have to turn off the movie he just started watching.

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.)

April 16

Jax and I had a good sleep. He was surprised to hear it was morning time already. He's starting to experience some jaw pain, a known side effect of the chemo (Vincristine - VCR) he received on Saturday. These folks are very generous with morphine so he's sleeping again, awaiting it to do its thing so he can enjoy his much anticipated bagel with cream cheese for breakfast. Our days are pretty quiet. Lots of playing laughing and eating. Oh my, the eating! Constantly hungry. iPad, iPod, iPhone, Leap Pad, movies, Lego, an inflatable rocket ship ... So far the benefits outweigh the discomforts for him! Tomorrow sometime he will have his second dose of chemo that gets injected into his spinal fluid. The fluid does not show any cancer, but cells can hide there undetected. The injection is necessary to kill any stowaways, as the IV chemo does not cross the blood brain barrier into the nervous system. He will be comfortably sedated for this procedure. Thank you for all the notes of encouragement. Keep 'em coming!

Persnickety

My answer, when asked how Jax is responding to the chemo ... "Great! The steroids* are more problematic right now as they make him rather demanding and generally persnickety."

*Heavy dose of Dexamethasone (DEX) - a powerful cancer-fighter!

Diagnosis: A.L.L.

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

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

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

2. Here's a general timeline...

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

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

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

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

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

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

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

5. I really need to start a blog.

VAD surgery

Jaxon will be going for surgery at 8:00 this morning and will come out about an hour later with a central line and access port. Doctors call it a 'Vascular Access Device (VAD)', kids and parents call it a 'button'. It will be the main access to receive his meds and fluids, for blood draws, and means far fewer pokes in the hand and arm. He currently has an IV in his hand, so that will be removed. He'll be much more comfortable and have his hands free from lines and other stuff.

The surgeon had an unmistakably Norwegian name. That, and his kind and thoughtful care of us was an encouragement.