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)

July 4-11 {INPATIENT}

** If you are reading this in February, don't fret!
I posted this today (Feb. 23/15) because I realized I hadn't written
anything about his fever and admission in July of last year. All is well! **

Due to a fever, followed by a series of very unfortunate events that took place at our local ER, Jax was admitted to hospital in Victoria for one week. He thought the ambulance ride there was pretty neat, I nearly hurled from motion sickness. The Malahat Drive is unforgiving under the best of circumstances for a lightweight traveler like myself. Sitting sideways in the back of a big ol' truck with interior lights on, trying to maintain a conversation with a super chatter paramedic and keep a smile on my face for my dear boy ... that was an experience I don't ever want to repeat!

I'll write more about this later.

short and sweet

Jax made the most of his 12 hour stay and made play dough with the fun lady, and played with it and new Lego with his friend Lucas. Thanks for the Mixel, Karen!

(add photos)

ER & Admitted - May 20

8:30 am
Back in hospital. :( Hopefully just a very short stay. Jax had some lower back pain last night and was very restless. 2 doses of morphine didn't help him settle so we came to ER. Strong suspicion is that it's from a kidney stone. Awaiting a time for kidney ultrasound, which was already on the agenda for our clinic visit today. His pain is on the same side as the suspected stone two weeks ago, though it was not seen on u/s. He's been sleeping since 1am and has not had any more pain. Still REALLY hoping to go home today, but not until this is sorted out. It's Marty's birthday tomorrow so there is added urgency to get home!

8:45 am

Ultrasound at 10:00. Now the challenge will be getting him to drink 4 cups of water/juice, and hold it in! Oy.

5:40 pm

Good news ... and disappointment. 

U/S showed happy and healthy kidneys. Not sure the cause of last night's pain but if kidneys are clear, docs aren't too concerned. We are well stocked with morphine. 

The disappointment is that his procedure for Thursday was not booked for Victoria (admin glitch), so we need to stay in Van until then. We are out of hospital and staying another 2 nights at Easter Seals. I thought about going home for Marty's birthday tomorrow and having Paul come here, but it's too much hassle. Marty will more easily get over my absence than Jax will.

Clinic appointment on Thursday morning at 9 at BCCH and then there should be NO reason why we can't go home. Lesson learned on the unpredictability of dealing with a critically ill child.

Admitted: May 10

Jax has been returned to "NPO" ... no food or water by mouth. (He was later allowed clear fluids.) He needs to poop. Docs want to see his poops normalize, and see him use his legs to stand and support himself, and hopefully take some steps. He's lost a lot of muscle tone from the meds, and has therefore lost confidence in his previous athletic prowess. He has had his last dose of the steroid DEX, and so as that wears out of his system, his appetite, activity level, and attitude should begin to improve. The struggle right now is that he needs to move to help the poop move, and because of the abdominal sensitivity, he's hesitant to move! He has been very cranky and sad that he is not allowed to eat what he wants. Please pray specifically for this today! 

Our older boys are on the ferry with Oma, on their way to see us for today and tomorrow!

Admitted: May 8

From the very beginning of our treatment here at BCCH, we have been looking forward to this day, "Day 29" of his treatment plan. The real 29th day of his treatment will be this Saturday, May 10th. The clinic is not open for procedures that day, nor will it be open tomorrow because the clinic will be closed for a department-wide conference/training/development day. So today, Day 27, he received his "End of Induction" procedures - a lumbar puncture (LP) to extract spinal fluid to check it for bad cells, and a bone marrow biopsy, to ensure that the first phase of chemo was successful to bring him to remission.

He has had 3 LPs in the past 4 weeks. The first one was on the very first day we arrived at BCCH. It was done to check his cerebral spinal fluid (CSF) for cancer cells, and to inject chemo (intrathecal cytarabine, IT-ARAC) directly into the spinal chord as a precaution, in case the cancer was present there. He had another of these procedures done on Day 8, this time receiving intrathecal methotrexate (IT-MTX). Both times, there have been no signs of cancer in his CSF. It is expected that this test will continue to show negative results. Today he received his second dose of IT-MTX.

As today is not officially the 29th day, he will need to have 3 more doses (morning and bedtime on Friday, and morning on Saturday) of DEX, a powerful cancer fighting steroid . DEX really does a number on kids emotionally and physically.

7:54 am
Clinic procedure appointment at 8:00 am, as planned!

8:42 am
His procedure just started, will be done in about 15 minutes. Some results will be available throughout the day, others by end of tomorrow.

8:46 am (Paul)
When we arrived here at BCCH exactly four weeks ago, we started off in Room 5 in the Oncology Clinic/Intake Ward. On this (hopefully) last day of "Induction" we are in the same room. Full circle. We sat in this room wondering what was wrong with him a month ago and today we're hoping to hear that the bad is gone!

The procedure went well. The first thing he said when he woke up was "NOW can I have some Rice Krispies?"

He's been having some issues with pooping since the onset of his dehydration. We were quite happy to hear that he pooped a bit during his procedure, as it showed that his "lazy gut" was awakening. He pooped lots today, though we are still waiting for more gas and stool to clear his system. Poor little bubs ... his itty bitty body has been through so much. 

Admission: May 7

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

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

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

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

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

Admission: May 6

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

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

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

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

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

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

His blood counts and electrolytes are at satisfactory levels.

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.