when cancer came (part three)

when cancer came (part one)

when cancer came (part two)

We were told the night before that our helicopter would be arriving first thing in the morning, and it arrived before 8:00. Jax had still been dozing on and off so I woke him up with the news of the helicopter ride happening very soon. I had just enough time to grab some more snacks from the parent kitchen. Jax wasn't allowed to eat because of the tests and procedures waiting for him at BCCH. He was calm and trusting as we waited for the paramedic team to get organized. Our morning nurse, Andrea, was amazing.

The paramedics were efficient and professional, and they got him snugly wrapped up for the ride across the water.  He wasn't scared, and I think he was even a little bit excited. I awoke with renewed hope that whatever was causing his blood work to go so wonky would be a temporary problem with an easy solution. There was a mood of anticipation rather than dread. Taking a content 5-year old for a helicopter ride has a way of doing that, I suppose.

Walking across the parking lot to the waiting helicopter.

They offered to take a pic of the two of us before loading.

He went in first and once his stretcher was locked in place,
I went around the other side to find my seat.

It was a beautiful day for a flight, and a great day to save a life!

Our family doctor later told me that just as she was arriving at the hospital to do her morning rounds, she saw the helicopter take off, and knew that it was taking us to Vancouver.

From our friend Joanne in Crofton ... 

"We were outside when you flew over. 

I was praying on the driveway and Geoff was 

waving and praying from the back yard."

(It was Geoff's birthday that day.)

It was really loud! Jax had a headset to dull the sound, no mic. 
He could hear the chatter between me and the paramedics.

This pic was featured on the front page of our
small town newspaper a few days later,
with details about Jaxon's diagnosis.

We landed at the Vancouver Airport and then went by ambulance to BCCH. We later learned that the helicopter flies directly to the hospital for more critical traumas and illnesses. Jax was very critically ill but stable enough to take a bit longer to get to the hospital.

Read here to learn more about the 

Infant Transport Team

servicing BC & Yukon.

I followed the paramedics and their precious cargo down a long hallway. My heart caught in my throat as I saw the sign indicating we were entering the Oncology Clinic. Another long hallway past a bunch of small offices and treatment rooms, then into the heart of the clinic. This was the sign on the outside of the room where Paul was waiting for us. I don't know if he was in the isolation room because of his mild cold symptoms, or if that was the only one available.

Hugs all around and worried looks exchanged between the parents. Tears in Daddy's eyes. He had a long time to sit in that little room and wait for us. Jax settled onto the stretcher bed, still happy and compliant with all we were asking of him. I think someone must have put some freezy cream on his hand in preparation to do another blood draw and to start an IV. It was clear that he required a blood transfusion, but the team needed to know what caused such chaos in his blood. They probably knew much more than they let on at that time, but didn't tell us much until they had confirmation. We answered all kinds of questions about his symptoms, his medical history, family medical history ... many times over for many different people.

We changed him out of his shirt and into a hospital gown as it was easier and comfier for all the exams he endured from various doctors and nurses. A medical student started the line for his IV. He did not cry. None of us were thrilled by the student's shaky hands and the mess she made with his blood on the bedsheet. She admitted that she still gets nervous when starting IVs. But the good news was that she picked a really good vein that served his IV needs well for that day and the next.

As displeased as he was about the IV in his hand, he liked the sticker they put on the cut-in-half medicine cup that was protecting the needle ... a golden retriever puppy, much like our Tucker!

We were moved to a different room in the clinic after that. It was in that room that two doctors, both young and beautiful and both named Ashley, as well as a few other people - nurses? Social worker? I don't know - came in to tell us that they had confirmed the presence of leukemia cells (blasts) in his peripheral blood. With tears in her eyes, Ashley S. told us that they couldn't say definitively that he had leukemia until they looked at his bone marrow under the microscope, but that since they saw blasts in his peripheral bloodstream, it was guaranteed to be in the marrow. 

We learned later that meeting with oncology doctors and parents and bad news is referred to as "disclosure".

We were told that he would be going very shortly for the sedated bone marrow biopsy to confirm his diagnosis and would receive his first dose of chemotherapy into his spine.

It must have been at this point that I didn't know whether to cry, shout, vomit, or lay on the cold dirty floor of the tiny little room we occupied. I was hungry, thirsty, tired, terrified.

I've since heard other parents describe those moments as ...

"and a black fear swooped in"

"And the water rushed all around me

and sucked all the air out of the room."

My friend-in-real-life (and fellow Momcologist) Christie said: said:
"I'm writing to make some sense of all of this. It's moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but can't remember what. The fog. I feel like that - all the time. They kept asking us 'do you understand why you're here?' Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this."

I won't say that it's the worst news a parent can hear, because it's not. There are worse things. This was our hardest thing. For Paul and I - it was our darkest hour.

We probably made some phone calls and sent texts to family and friends then. Jax was content watching movies, though he was very hungry! He hadn't eaten anything for about 20 hours.

They came to take him, and us, to the procedure room. Some call it the bubble room. They have a bubble machine to use as a distraction for distraught kiddos. We didn't need the bubbles this time.

I'll never forget the moment I rounded the corner into the room with Jax in my arms. As soon as we entered with our nurse, what seemed like a dozen people in the room turned to look at us. Most wearing scrubs and stethoscopes, some in gloves already, others with paperwork. Their chatter stopped. They were standing, sitting, waiting to take us and our boy somewhere no child or family should ever have to go.

Paul vacated the room pretty quickly. He knew that he'd be out cold himself if he stayed any longer.

I laid Jax on the stretcher and snuggled him until the sleepy medicine took effect. I remember looking at all those faces as I backed out of the room.

Paul was waiting for me in the hallway, just outside the opaque glass doors that someone closed after I left the room. We embraced, and that's when the sobs came. We stood there a minute or two, absorbing what had just happened. Paul said through his tears, "those were angels in there".

We went back to our little cubicle room with glass doors and drew the curtains. I laid on the bed where Jaxon had watched 3 or 4 movies earlier that day. I sobbed, Paul wept quietly. Suddenly all the "what if" and "if only" thoughts came to my mind. Paul talked me through all that, and we chose to focus on that day forward, and not to dwell on why or how we got to be there.

More phone calls. More texts.

I'm not sure how long he was away from us. I know now that 
a lumbar puncture procedure is typically done in under 10 minutes. A bone marrow biopsy likely doesn't take much longer.

He returned to us on the stretcher from the procedure room, still sleeping. A nurse or two came in to monitor his vital signs as he was coming out of the sedation. A few different nurses were there, trading off, and also chatting with us.

Sometime around 5pm, Dr. Ashley came to tell us that the bone marrow biopsy confirmed the diagnosis ... Leukemia. 

Drowning again. 

There were so many faces we met that first day. Doctors, interns, residents, fellows, students, nurses, social worker, research coordinator ... so many. They told us that although it was known to be leukemia, further pathology testing would tell us what main-type and sub-type it was. Knowing those things would dictate the next steps to be taken. There would be a "Family Meeting" the following afternoon for more details, questions and answers.

Then it was time to head upstairs to the oncology ward. 

Our child. Cancer patient.

Paul, Jax & Clinic Nurse Danielle, as we ventured down more unbearably long hallways, then upstairs to Ward 3B, Room 14.

Because of a Norwalk type of virus that was spreading between the two wards (on two different floors) of the oncology department, space was limited. We had roommates. More about them another time.

Our dear friends Frank and Sherri came to bring us McDonald's dinner (at Jaxon's request and against their better judgement). They brought food, hugs, prayers, laughter and encouragement.

Once Jax and I were fed and settled, Paul left to go somewhere to sleep. I think it was to the Easter Seal House.

That was Day One.

when cancer came (part two)

when cancer came (part one) {here}

I called our family doctor first thing on Wednesday (April 9th, 2014) morning and got an appointment for 12:10pm. The timing was perfect as I could drop the older boys off at their weekly homeschool group class and then go straight to the doctor. That morning there was a meeting for parents about the upcoming changes from the provincial government for the 2014/2015 school year. While the older boys went off to activities with the other kids, Jax stayed close to me for snuggles during the meeting. He received several sympathetic looks from staff and other moms at the meeting. I mentioned my concerns to a few friends after the meeting and they affirmed my decision to pursue bloodwork. Most agreed with me that his complexion looked pale, another friend thought he looked yellow. One friend sent me on my way with a hug and a quick prayer for courage, peace, answers.

While talking with our family doctor, I mentioned my concern about leukemia being the cause of his symptoms. I told her about Debbie. She assured me that leukemia is rare, is not hereditary, and that it was highly unlikely to be the cause. Yet she readily agreed to run bloodwork (at my request), to set all our minds at ease. 

Right from the doctor's office, I took him to the hospital lab for bloodwork. He was a champ! I don't think he even cried, just a flinch at the needle pinch. The boys and I completed our day in town and headed back home. Jax played with the boys next door and made himself a smoothie with Sharon.

At about 6:00pm, the phone rang. Paul answered. After a moment he said "Oh, hello Patricia." And I knew. She asked Paul if I was with him. We went into our bedroom and closed the door, our doctor on speakerphone between us. She said that Jaxon's bloodwork had come back and that it showed his hemoglobin was frighteningly low. (Hgb should have been easily over 100, and it was at 40.) She said "I know I said that this is likely not leukemia, but these are the kind of numbers we see in leukemia." Our stomachs dropped. Voices gone. Tears came. She told us that she had spoken to the pediatrician on-call at the Duncan hospital who agreed that he needed to be assessed quickly and thoroughly. She told us to meet Dr. Z in the emergency department at 8:00. She said that we would not have to wait long to be seen, to tell the triage and registration desk that we were getting a "direct admit" as per our family doctor and would be seen by Dr. Z. At that time I didn't know what "direct admit" meant, now I do. It meant we had a very sick child who needed immediate attention, and we wouldn't be going home anytime soon.

We called Frieda and she immediately started the 90-minute drive to our house. I grabbed my pillow and Jaxon's, as well as his cozy blanket, and maybe a blanket for me. I couldn't think of anything else to take. I must have taken his slippers. He wore big orange rubber boots out the door. He, or maybe the other boys, asked why I was taking pillows and blankets. I said it was because we might be there for a little while and I wanted to make sure we'd be comfy. We fumbled around the house for a bit, I have no idea what we did. I don't think we had supper. Finally, we just decided to make our way into Duncan (25-minute drive). We sent Max and Marty next door to play and eat until Frieda could get to our house to take care of them for the night. I probably called my mom and my sister to let them know what we were doing. I had talked to my sister that day about my concerns, I don't remember if I had told my mom anything at that point. Maybe my sister filled her in?

Updated details from my Mom ...Our phone rang at about 6:45 pm on April 9, 2014. Because it was a Wednesday we had finished supper and I was likely hurriedly cleaning up before the people arrived for Bible Study. It was Laurel-Anne, I think you had asked her to call us. She told me that you had recently been having concerns about Jaxon's health leading to a visit with your family doctor that day. She told me about the call to you at home less than an hour earlier, about the "frighteningly low hemoglobin," and the appointment with the pediatrician in Duncan soon to take place. She also said that you had phoned her to learn about E's anemia after his viral infection.
I went to tell Dad, and as we hugged each other, he asked, "does that sound like leukemia to you?" I answered, "yes." Ten minutes later our friends arrived for Bible Study. We began by telling them what had just transpired and prayed together for your visit with the pediatrician and whatever was to follow.
You were able to phone us at about 10 pm after the visit with Dr. Z and knowing that the helicopter was arranged for the next morning.
I think Laurel-Anne phoned your brothers and families too.
When Dad and I prayed together before falling asleep (yes, I think we did sleep), we determined that we would choose to trust the sovereignty of God. 

When I had heard our doctor mention the name of the pediatrician we'd be seeing, it sounded familiar to me but I couldn't quite place it. We got to the hospital in plenty of time for our 8:00 "appointment". 

Although he was feeling crummy, he was still full of beans and smiles and lovies.
On the way into the ER there were some paramedics hanging around in the ambulance bay and they used some choice words in their conversation just as we walked by. I turned and gave them the stink-eye and carried on inside. As we were sitting talking to the registration clerk, one of the paramedics came in and gave Jax a stuffie. Compliments of Shaw, but still ... I appreciated the sentiment.  Jax would need that buddy over the next few days.

I saw a nice lady come in through the main doors, and as she chatted with someone else in the waiting room before flashing her lanyard to open the door into the ER, I knew why her name sounded so familiar. She had volunteered at our camp a few summers earlier, and she and I had chatted a few times. I don't know if I knew at that time that she was a pediatrician. A few minutes after she went in, Jaxon's name was called. I don't remember if we were seen by a nurse first, or if Dr. Z just came right in to start her examination. 

My darling! What yellow flesh you have!

Dr. Z listened to the history of Jaxon's illness, now hearing it from the perspective of knowing what his blood was telling us. We told her about Debbie. Knowing that his hemoglobin was so drastically low brought much greater urgency to find out why he was still so unwell. She affirmed that it could very well be a viral suppression of his bone marrow, but she did not rule out the fact that it could indeed be "that big scary thing that we really hope it isn't." Further bloodwork would tell us what course of action to take. She prepared us for the fact that he may need to be transported to Victoria or even to BC Children's in Vancouver for further testing. A transfer to Victoria seemed scary enough, knowing that BCCH was a possibility was absolutely mind-blowing. I don't know if she consulted anyone in Victoria, but she did get in touch with the oncology department at BCCH. They told her what blood tests to order. The lab tech came in while Dr. Z was out of the room and commented to us on the vast number of tubes needed to collect all the blood that was to be analyzed. Not helpful, lady. Not helpful. But thanks for doing your job.

Popsicle prize!

After x-ray tattoo prize! Daddy's damp, leaky eyes.

Dr. Z was in and out of our room several times to talk to various people and back to us. She came in to say that BCCH wanted to see him first thing the next morning, and that we'd be going over on the first ferry the next day. When she came in again and said that BCCH wanted him to be FLOWN over the next morning, we were stunned. Again Dr. Z reminded us to hope for the best, but assured us that if it was indeed something big, bad, and scary ... we'd be okay. We could do this thing. The fact that SHE was the pediatrician on-call that night, the way she spoke to us about the serious nature of his illness, the way she cared for us and encouraged us ... we are so very grateful.

We were moved upstairs to the peds ward to settle in for the night. I don't remember any of the names or faces or much of what happened at all. I scrounged around the parent kitchen for something to eat. Digestive cookies and apple juice never tasted so good. Paul went home to gather more clothes and things for me and Jax.

Earlier that week, he had come to me to show me something amazing! "Mom! Look, I can see my heart beeping!" I looked at his chest and indeed I could see his heart beating. Knowing nothing about normal resting or active heart rate for a child, I thought how cute it was that he noticed it. I told him "that's great, it's doing it's job!".  Upon exam in the ER his resting heart rate was noted to be about 132 bpm. Too fast. Because of his severely depleted hemoglobin (the part of the blood that carries oxygen around the body), his heart was needing to work extra hard to sustain his major organs. Several people commented in the early stages of diagnosis that if an adult had such an alarmingly low hemoglobin, we'd be flat on our backs and feeling debilitatingly unwell.

Despite the smiles and "thumbs up", he was really annoyed by the oxygen tubes in his nose. I had to put it back on several times as he knocked it off. One clever nurse adjusted it to go down to his nose from the top of his head, not up from underneath his chin. That worked much better and he finally drifted off to sleep.

I didn't sleep much. I waited for Paul to return with whatever he could think of from home, and I watched this little monitor tell me what his heart rate was (red) and the percentage of oxygen in his blood (green - "sats"). Because his hemoglobin was so low and not doing its job, the extra oxygen he received did the work, and did it well. He stayed on the oxygen all night, and his heart rate and sats remained stable. I found some cookies and milk for myself in the parent kitchen.

Paul came back around 1 or 2 am and snoozed for a bit on the pull-out chair in our room while I snuggled with Jax. The plan was for him to drive our car over on the ferry with our big bag of stuff while Jax and I caught a ride in our own private chopper. Paul caught the 5:45am ferry and got to BCCH before we did.

when cancer came (part three)

when cancer came (part one)

Do you know how to boil a frog? The theory is that you don't drop him into a pot of boiling water because he'll just jump right out. Instead, you put him in cool water and gradually bring it to a boil. Because the temp slowly rises, he doesn't realize what's happening and we all know how that would end for a frog. It was the same with the clues Jaxon's body was giving us that something wasn't right inside. We didn't see the external indicators as much because he was with us all the time. But for those who didn't see him every day, the signs were much more obvious. 

Starting near the end of March 2014, around the 28th, Jaxon had a cough and cold. I noticed that he had been tiring more quickly than he usually would. He'd come to me during the day for extra hugs and snuggles. Looking back, I think he was feeling fatigued but of course he didn't know how to express that and I didn't see it as anything to worry about. His cold symptoms didn't seem too bothersome. He had hives a few times, which was not a surprise as we had discovered in January that he sometimes gets hives when he's fighting a virus. He had some low-grade fevers now and then, but nothing alarming.

I took him to our family doctor on Tuesday April 1st, just to see what she thought. She said that he probably had the same crud that so many people seem to have at that time of year. She said his cough sounded just like many others she had heard over recent months, that it might linger for a few weeks but that he'd surely bounce back. Looking back on the summary of that appointment, I see that she noted he looked pale and subdued. The hives were consistent with his previous reaction to a viral illness. I hadn't been giving him any Tylenol or Advil since he didn't seem "that bad". She said to give him Advil every 8 hours for a day or so to see if he'd perk up. I kept him with me while the boys went to their weekly St. John Ambulance first aid class that night. Since he had a touch of cold and cough and wasn't back up to full energy, he was happy to stay with me. I had a previously booked appointment with our family doctor for myself the next day, Wednesday 2nd.  Jax was with me again and she commented on how he looked so much better than the day before and he was likely well on his way to recovery.  That night we had a Camp Family Dinner. Other than mild cold symptoms, he seemed fine to me. That night our friend Chris took one look at Jaxon and instinctively asked him if he was okay, if he needed to lie down, if he was going to throw up. He saw that Jax looked really pale, told me that he thought it looked like Jax was about to pass out. I appreciated his concern, but didn't think there was much to worry about and still assumed Jax was just getting over something. We had just seen the doctor the day before and she seemed confident nothing was seriously amiss. I don't remember much about the next several days, just that he was still tired and not his usual self. 

These next details are fuzzy for Paul and I, but this is the best we remember it. On Tuesday (8th) afternoon, Paul took the boys to drum lessons. Max had drumline practice and it was Jaxon's turn for his 15 minute lesson with Drum Teacher Conor. Marty hung out with Paul. At 4:45 when Max and Jax came out of their lessons, Drum Teacher Dustin commented to Paul that Jax looked really unwell, and reminded him how important it was to keep sick kids away from the group lesson as illness can spread so quickly on the team. We were still of the belief that he was just getting to the end of whatever viral bug he had and that he was no longer contagious. Paul then called me at home to see if I should call the doctor back to maybe get Jax in for bloodwork before the end of the day. I called the office but they were closing for the day, and told me to call at 9am the next morning for a same-day appointment. At 6:30pm on Tuesday the older boys went to their St. John Ambulance class. As Jax still wasn't feeling top notch, he spent that time with Paul after they dropped the other boys off. One of the SJA leaders mentioned to Paul that Jax really did not look well, and asked if he was sick. That's when the first red flag really broke through our "he's fine" bubble. Paul called me and suggested that I call his Mom to ask for her perspective on what to do next. We thought he might be anemic as a result of this viral sickness he had going on. That happened to my nephew several years ago when he was about 2 and a half. A viral illness can trigger a suppression (like a 'stop work order') of the bone marrow. It's a temporary condition that usually resolves. That's what we really hoped it was, and figured that must certainly be the answer. But we also had a nagging suspicion / fear / dread that his symptoms could very well point to something much more serious. 

Debbie:

Paul's older sister was diagnosed with leukemia (A.L.L. - the same as Jax) when she was 7 years old. Paul was only 4 at the time so he doesn't remember much about her three years of treatment. We've heard bits and pieces from Frieda and Deb over the years. I called Frieda to tell her about Jaxon's illness and the comments we'd been getting from other people, and to ask her about what Debbie's symptoms were before her diagnosis. Deb had some swollen glands, bruising in unusual places (abdomen) and petechiae on her chest. Her bloodwork revealed a low platelet count, while the other components of her blood looked ok. Although we didn't have bloodwork results to look at yet, Jax didn't have any of the symptoms Deb had so we felt reassured.

Debbie, recently returned home from initial treatment in Vancouver.
Age 7 (or maybe 8) in 1982. Bunny snuggles.

Deb & Jax meeting for the first time in June 2009. He was about 6 months old.
Deb celebrated her 40th birthday the same week that Jax was diagnosed.

Frieda agreed that a follow-up call to the Dr. would be a good idea, to insist we get bloodwork done, just to put our minds at ease. It was probably 'nothing' ... but we were not naive to the fact that it could be 'something'. 

when cancer came (part two)

LTM • Cycle #2 • fever and other stuff

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

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

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

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

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

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

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

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

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

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

with all his stuffies close by.

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

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

He's holding his brand new Bravery Buddy.

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

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

on learning your child has cancer ...

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

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I edited this post to share about Miss B. 

Original post below.

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

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

Have a look at her blog.

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

"And the water rushed all around me

and sucked all the air out of the room."

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

six months

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

April 10, 2014.

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

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

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!