Thursday, May 22, 2014

Home!

(add 2 photos from BCCH)

10:50 am

In the clinic playroom and then enjoying a post-procedure popsicle! Because he had a spinal procedure, he has to lay low for an hour, almost done that now. Watching shows until 11:15 when we should get the green light out of here and head to the ferry!

1:37 pm

We are in line and will board the 3:15 boat to Nanaimo!!!

7:45pm

Home to brothers, Oma, Tucker, friends next door. As it should be.



Other than the smiling, teary faces of our family and friends welcoming us home, the first thing I noticed was the SMELL! It's spring, almost summer! Who knew? There were only a few buds on the trees when I left home 6 weeks ago. I came home to the lush greenery, fresh from a rain shower. It was unbelievable. That's when I realized I haven't been outside for more than about 20 minutes since we left home. This is bliss ... until my hay fever kicks in.

Wednesday, May 21, 2014

The Marty Party, #8!

The Marty Party of 2014! Thank you, our dear camp family and actual family for making this day so special. So much love for our one-of-a-kind boy. This Mama's heart is pining for home and the reunion will be so sweet!

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Tuesday, May 20, 2014

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!

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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.

Sunday, May 18, 2014

getting around ... slowly.

We've been having some quiet days here at Easter Seals House. Jax has been feeling good and slowly working on getting more mobile on his own strength. This morning he walked about 10 feet unassisted, and a few other times, shorter distances. Our physio team believes his mobility issues are temporary and caused from being in bed for two weeks, compounded by the effects of the Vincristine chemo. While in hospital this time he was being closely monitored for heart rate, BP, respiration, and his bowel issues. So overall he was feeling crummy and with his restricted food intake, had very little energy. We have a paediatric walker he can use to get moving around but he's not a fan of it. He's more content to walk with my help. We went for a long walk with him in the stroller yesterday and are heading out to do the same now. We expect that as soon as he returns to a home environment where he'll have more motivation to get up and about, he'll be keeping up with the big boys in no time.

Friday, May 16, 2014

our home

via Paul:

Many of you have already generously donated to our Fundraiser page to help our family cover the costs of Jaxon's expenses over the next three years, to which we cannot express enough gratitude.

There is also an urgent great need for Jaxon ... to have a healthy home for him to return to where his immune system can recover. 

We live on site at Camp Imadene and the Imadene Foundation is currently accepting donations so they can renovate our home and bring it up to an acceptable standard of living for Jaxon. All donations are tax receiptable.

Our home needs a few significant upgrades including a kitchen, bathroom, laundry facilities, windows, flooring and a new heating system. These could total up to $60,000 which is a substantial amount of money, but the Imadene Foundation is committed to making sure Jaxon has a suitable home and feel these changes are necessary.

If you, or someone you know, is interested in supporting our family in this way, please check out the Imadene link below (or share it so others can know our need).

This project is somewhat urgent as it is the one thing that is keeping Jaxon from a consistent living environment and is also the last step in seeing him re-united with his brothers and favorite backyard here at Camp.

http://imadene.com/donate/jaxon/more.html

closer to home!

Packing our bags! My Mom, Jax and I will be staying at Easter Seals House for the weekend, back for a clinic appointment on Tuesday morning, then catching the first ferry we can!

Lucas!


Our new friends from RMH! Lucas was a good friend to Jax when both our families were there, and the support and friendship for us parents has been invaluable! We look forward to making new memories together away from the hospital setting! xo

Lucas at RMH!

Thursday, May 15, 2014

May 15 - LP/IT-MTX

9:28 am
Waiting with Jax in the Oncology Clinic for his LP today. They are running behind and he's tired of waiting with an empty tummy! He wants his breakfast but must wait, could be another hour yet. Toopy and Binoo are only a mild distraction.

No tests today, just a dose of chemo into his spinal fluid. He'll be getting one today and two more over the next two weeks. Has already had 3 since diagnosis. His spinal fluid has always been negative for cancer, this is standard procedure as a precaution as the IV chemo doesn't cross the blood-brain barrier.


11:06 am
All done now, waiting for him to wake up from his power nap, then it's brunch time!

Tuesday, May 13, 2014

physio, poop, bikes, next phase, going home

Jax had a really good day! We spent some time with the physio lady again, and he had some fun (despite his reluctance) and showed signs of increasing strength in his core and leg muscles. He's taking small assisted steps, is sitting on his own, and went for another bike ride this evening. The seat was causing trouble for him as he doesn't have much padding on the rear end, so the lovely lady from the Occupational Therapy Dep't customized a cushion for his toosh. Hoping he'll venture farther on the bike tomorrow. We have another appointment tomorrow morning with O/T and Physio. He tires and gets frustrated easily, so please pray he is eager to do the games and exercises.

Things are going well on his recovery from constipation. Enough said.

We have moved out of our familiar oncology ward, downstairs to the smaller, quieter oncology ward. It's nice to know that we're no longer assigned to the room closest to the nurses' station where they could easily and carefully and very frequently monitor Jaxon in the early days of this admission.

Our Oncologist (Dr. Dix) stopped by to chat about what we can expect in the coming weeks as we move into the phase of treatment called "Consolidation". Thankfully, it's a much less intense one-month phase of his treatment. This Thursday, Jax will receive another IV dose of Vincristine (VCR) and also another intrathecal methotrexate (IT-MTX ... chemo injected into his spinal fluid). He'll get some sleepy milk for that one. If all goes well with those, we expect to be discharged on Friday. Dr. Dix wants us to stay in close proximity to BCCH until we can see him again in the clinic on Tuesday. And THEN ... we hope to hear him say that we are cleared to return to the Island for the rest of his treatment. He'll receive daily oral chemo at home, and will have 2 more weekly IT-MTX (to be done in Victoria).

Paul is planning to head home for the weekend as it's a big annual work weekend at camp that he doesn't want to miss, as long as he's not needed here. My mom will come here to spend the last few Vancouver days with me and Jax.

"How does she do it ... ?"


Excerpt from the article:
"Mothers who take care of children with serious diseases don’t have the same luxuries that the rest of us have. Every parent carries the nagging fears: What if something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?
But, for mothers whose children are healthy, we can put those fears on the back burner. We don’t often have to look that scary monster in the eye and face the reality. We can hide our heads under the covers and pretend that as long as we can’t see the monster, he can’t come and get us. For mothers who are battling a child’s illness, that’s a luxury they cannot afford."

Sunday, May 11, 2014

VanAqua via RMH

Two of my little Loves. We're so glad it worked to spend time with them this weekend. Good memories despite our present circumstances.


From Paul:
Thanks RMH for the free admissions to the Vancouver Aquarium. Max & Marty loved it.

Mother's Day

8:30 am
I'm hoping my boy poops well and confidently supports his own weight today. 

12:30 pm
Jax gave me what I was hoping to receive today - a nice poop from him! He's now allowed to add soft foods to his diet. Waiting for PZ to return from adventuring with the other boys and bring Jax his much anticipated crepe with syrup. Or if no crepes are to be found, a chocolate chip pancake with chocolate sauce would be acceptable.

Saturday, May 10, 2014

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!

SMUS Fundraiser

Special thanks to our camp friend, Jenny H. She organized a fundraiser in honour of Jaxon at her high school in Victoria. The students raised $800 by making a small donation, and were then allowed to wear street clothes for the day instead of their school uniform. They did this on Jeans Day, an annual fundraiser for BC Children's Hospital Foundation. Thank you, Jenny & SMUS!

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!

Friday, May 9, 2014

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.

Thursday, May 8, 2014

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. 

Safe to shore ...

This song has been on repeat for us these past few days ...



Marek

We met 3 year old Marek and his family a few days after Jaxon was diagnosed. He was diagnosed with A.L.L the day after Jaxon. The boys played together in the playroom one day when they were both feeling good.

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Support for Marek from Yukon Parliament

Wednesday, May 7, 2014

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.

Tuesday, May 6, 2014

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.

The house on Angus Drive


From Paul:
33 years ago my sister Debbie was one of the first families to walk through these doors. Yesterday our family was the very last to walk out of those doors. The brand new Ronald McDonald House will be ready in a little over a month. We will be one of the first families to go through the new doors. Thank you everyone who supports BCCH and RMH!

From me:

My Auntie Ruth also stayed there with her toddler and critically ill baby during the house's early years.

We are glad to have experienced this special place for part of our stay here in Vancouver. We would have missed out had we not made some friends and memories there.


Here is a lovely video of A Day in the Life at RMHBC. The bedroom shown just before the 2:00 minute mark is the room we stayed in for almost 2 weeks.


Wednesday May 7th is McHappy Day! 

Via Ronald McDonald House BC ... 
$1 from every Big Mac, Happy Meal, and hot McCafé beverage sold on this day in BC will be donated to Ronald McDonald House BC and other children's charities. Since 2010, proceeds from McHappy Day have helped to build our new House and Surrey Family Room, so be sure to stop by your local McDonald's!


i will climb this mountain

my friend shared this blog post today, with a link to a new song she has learned. 

i enjoyed listening in the quiet darkness of BCCH Oncology Ward, Room 8.


(click the link below to her blog post, scroll down for the song)


NPO


NPO means 'nothing to eat or drink by mouth'. This is in place to let his gut rest because of his recent vomiting and lack of pooping. The first thing he said to our nurse this morning was "every stinkin' minute I'm hungry!" Being on a steroid that heightens appetite and then being slapped with an NPO order ... No fun.

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. 

Monday, May 5, 2014

BCCH Concierge!

There are people here at BCCH who come to patient rooms and ask the parents if they need any tea or coffee. I was hoping for the lady to come, and she arrived to take my order! Just returned with my London Fog. If I hide here behind the curtain, Jax won't see me sipping!

ER - May 4th

8:14 pm (Paul)
Pray for Jax. Back in hospital tonight. Looked like dehydration, and may only be that. However, there are a number of signs of a number of things which could lead to other more serious complications (possible surgeries, but likely not). We will update when we know more ... please continue to pray.

9:10 pm (Rachel)

Jax has stabilized and blood work shows he is responding well to fluids. He will be admitted for at least 48 hours for close observation to ensure the improvement continues. Dehydration sets off a host of other complications, considering his disease and the course of treatment. Some major concerns have been eliminated, some are still being watched. Also waiting a few days for blood culture for any signs of infection. This was a scary evening as it was our first "hiccup" but we are breathing easier now.

10:35 pm (Paul)

Jaxon's levels are getting better with the IV liquids and meds. The Dr's are still not exactly sure, but it looks like dehydration was likely the cause. Jax and Rach will be in hospital for at least 48 hrs which will be enough time to get all his results back to make sure there isn't anything more serious. 

Pretty funny story: The Dr's wanted a urine sample so we asked Jax if he could pee for us. Head shake, no. I told him a very gentle version of what a catheter was and he agreed to try peeing on his own. The nurse got a little cup ... we asked for something bigger. She wasn't too concerned. Three cups later ... we had warned her.

Jaxon's very low sodium levels have crept back up satisfactorily. His hemoglobins have reduced as they were concentrated because of low hydration, so that's good. The ECG was good and the neurological test seems good as well. Pancreas isn't totally off the list, but likely won't be an issue. 


So, you can see that a little water (well, the recommended consumption anyways) can go a long way! We have not been forcing him to drink, but strongly encouraging it. Because of his lethargic response and complaining of nausea we haven't felt it necessary to push it and then have him throw it up, and make him more dehydrated. So, we're all learning what the right balance needs to be in all this. Seems like being proactive rather than reactive is the key here.

Please pray for wisdom and insight for Rach and I as our new normal doesn't seem to be consistently normal at all right now. Looking forward to 6-7 months down the road when the norm should be fairly consistent. We appreciate your patience as we attempt to relay correct information which seems to change regularly for us at this stage in the game.

Saturday, May 3, 2014

If you ever ...


Clinic and other stuff

Jax had his second-to-last clinic appointment yesterday. He received his final (for now) dose of Vincristine. His blood work showed an excellent report, indicating that healthy cells are returning which can only happen when the diseased cells are lessening.

Here's my Facebook update from yesterday:

Today brought us another Oncology Clinic appointment. Jax received his final dose of Vincristine (chemo) for the Induction phase of treatment. His blood work looks great, really great! His ANC (Absolute Neutrophil Count - google it for more info!) is at 1.31, which means his risk of infection is much lower than it has been in the past 3 weeks, when it dipped as low as 0.27. Both Metric and Imperial measurements are used to calculate blood counts. ANC of 1.31 is within the 1000 range, and is considered "minimal risk of infection". When his HgB count was 40 at diagnosis, others would call it 4. As the ANC increases, it indicates that there is less disease in his blood.

We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.

We have a whole week off of appointments! He has his final Induction appointment on Thursday May 8, when he will have a lumbar puncture and bone marrow biopsy (after the "sleepy milk", of course). If all results indicate that he has indeed responded appropriately to treatment, we should be able to return to the Island on Friday or Saturday. We expect to do most of the next phase of treatment (Consolidation) in Victoria.
And Paul's:
Today we had our second to last visit to BCCH for this initial stage of induction for Jaxon at which the doctor told us, after looking at his blood counts, that we could safely go to a public place with Jax because his ANC's were above 1.0. The fact that his ANC's are above 1.0 means there is room in his bone marrow to produce good white blood cells which means Jax is responding very favorably to the treatment. The next phase (6-7 months) will have various stages of 4 and 8 week treatment mini-phases within it. Each phase will continue to be challenging as Jaxon's body responds accordingly. Please continue to pray for Jax, for us his parents and for Max & Marty too. Your continued support is always encouraging. 

We had a busy day yesterday.  After clinic, we spent several hours at Metrotown, arranging a new cell phone plan for both of us. Paul hasn't had a cell phone since we moved to the Island, just an iPod for texting and emails. With all the traveling back and forth and all the arrangements that he needs to take care of from here or at home, it became clear we needed to get him a phone. We found a great deal with Fido and although it took several hours, we are all set up for easier and reliable communication.


Jax snoozed in the stroller most of the time we were at the mall. I found a few sales and got a couple clothing items I've been needing. Toward the end of our errands at the mall, Jax started telling us "Let's go already! I want out of this mall!" On the way back to RMH he started feeling really icky. He says his tummy feels "bad". Hard to know if it's pain or nausea. After some time spent with his head in a bowl, we gave him half a Gravol. He slept for 16 hours, woke up to pee and give his breakfast order, and is resting again now. Big day yesterday. He hadn't napped for a few days so I guess he's got a lot of catching up to do! He was happy to hear my answer when he asked if he would need a poke today ... Nope! No pokes for lots of days!