Jay Lutz

Road to Recovery Update

This web page will provide periodic updates on Jay’s battle to defeat leukemia.  (You can reach it at this shortcut: http://fme.ly/jay ) (And check out Jay’s twitter feed at https://twitter.com/fromvghwithlove )

As of June 1, we don’t expect to add updates to this blog. Jay will be focusing on other aspects of his healthy life, and so will we! Thanks for reading, praying and supporting him and us. It has meant the world to us!

May 31, 2016

We met with the oncologist today, and as we expected, she summarized the results of the exit tests Jay has been undergoing for the past few weeks. There is no evidence of residual cancer, and the blood his marrow is producing is getting closer to being “normal” every day. His immunity will be compromised for as long as he is on the drugs he is taking, but for the stability of his body systems, those drugs will continue for several or many months. There are common graft vs. host symptoms that may still appear, but most are minor if treated early. Yes, there are some permanent side effects of his treatments, but they are known and manageable and certainly not life-threatening. His hickman line was pulled out (while Jay videoed the removal with his go-pro...a definite “first” for the attending doctor!) So he is now officially a “survivor”!

But is it really over?

In some ways, we will carry the painful memories of the past 9 months with us for the rest of our lives. But there is character growth that will remain with us forever too. And in different ways for all of us, a confirmation of God’s love through all the difficulty. So yes, it is over, but we are changed. We are thankful for so many things.

(Jay carrying his extra drugs to be discarded, and two pails of fresh cookies that his Papa baked to thank all the nurses and doctors in the BMT wards.)

May 24, 2016

As a family, we spent the long weekend up at Barnabas camp for a work retreat. Lots of planting, washing, organizing and wheelbarrowing. Jay was able to connect with some of the summer staff who are already planning the program for the summer, and that has only served to increase his eagerness to begin contributing. He determinedly went on a hike during the weekend with other staffers. While his pace was slow, it was another significant notch in the mental process of healing. Tomorrow is a very important meeting with the “discharged outpatient” staff at VGH. We expect to be given the schedule of blood monitoring for the next number of months, and to be approved to have the Hickman line removed on May 31 when we meet with the head oncologist.

May 19, 2016

Happy Happy Happy Happy

Jay isn’t even home from his hospital appointment today, so I don’t have all the details, but his bone marrow biopsy results were “awesome”, which means that there is no evidence of residual cancer, and that the transplanted bone marrow engrafted well. After these two things, pretty much everything else is gravy.

May 12, 2016

Day 100. Day 100? DAY 100 !!!!!!!!!!!!!!

Alas, the most significant part of this day so far has been the 15 vials of blood taken from Jay’s central line, and the bone marrow core sample mined from Jay’s left hip. The entourage of nurses and doctors at the outpatient clinic didn’t drop their charts when we arrived to sing and bring us cake and balloons.

But that doesn’t mean we aren’t celebrating! We will share some cake tomorrow with friends, and spent waiting time at the hospital today planning our open tiny house BBQ for June. Hopefully by then Jay will have finished jumping all the post-100 hoops and can really cut loose!

Oh, and to mark the 100-day occasion, Jay’s new hair finally poked through. We aren’t sure what colour it will be, but it looks lighter than it was in December. We’ll know more in a week, along with the results of today’s important tests.

May 5, 2016

At today’s appointment, Jay asked if his Hickman line would be removed at the 100-day mark next week. He has carried the 3-pronged catheter tubes in a little neck pouch for such a long time that I really don’t know what he will look like without it! While there doesn’t seem to be a solid medical reason why they can’t remove it on schedule, the doctor warned Jay that they would likely want to keep it in longer. His unusual Haploid transplant has everyone just a little more cautious. Jay wasn’t thrilled to hear that news, and vows that he will give them a couple of extra weeks, but no more! His real concern is that it be removed before he starts work at camp. Of course he has to be a little quiet with all these plans, so he stayed calm and probably rolled his eyes a few times at the “helicopter doctors”.

May 4, 2016

Day 92. We are inching towards those all-important end-of-treatment appointments! Jay’s skin has cleared up considerably. It’s still a bit spotty and peeling, but much better than it was two weeks ago. He was able to drop another long-term medication this week, which leaves only 2 actual drugs, along with some dietary supplements. It will be another month before Jay can reasonably begin working up at Barnabas camp, so we’ve had fun shopping for tiny house furnishings and planning an “open tiny house” for a day in June when it arrives from Edmonton. He is also working out at the TWU gym a couple of times a week, and preparing another short video and set of speeches for two upcoming Canadian Blood Service events.

April 30, 2016

Jay was interviewed on Round House Radio today. You can listen to the recording here: https://www.dropbox.com/s/8te9jkt2xwcmffw/JayRoundHouseII.mp3?dl=0

April 26, 2016

Day 82. It feels as if we are back to spending lots of our time planning and scheduling events, meetings, and social gatherings for future dates. How different from back in September when we couldn’t know what would happen one day ahead!

Jay continues to have lots of energy and a positive outlook. This is despite him having developed some pretty rough sun-induced graft vs. host skin disorder on his face, neck and upper body. All his time in the sun with the pressure washer and inadequate sun protection sparked a severe reaction that looks like acne piled on top of heat rash. The VGH doctors cut out a sample of his skin and sent it to the lab to confirm their diagnosis, so he has a neat little stitch on his shoulder to add to the scars that will be part of this story. After several days of topical medication, long sleeves and sunscreen, things are starting to look a little less angry and itchy, but it may be quite a while before he is completely healed.

April 17, 2016 (updated with link to Jay’s video April 20)

Day 75. All of us are continuing to rediscover life after the intensity of Jay’s treatments. Dale went on his first longer business trip last week. Jay pieced together social events, some volunteer work, and began a large job pressure-washing our exterior surfaces to make some money. I attacked several rooms with a self-righteous spring cleaning fury. Devon is attending many late-night rehearsals for his high-school play. All good things that we haven’t been able to undertake since September.

Jay and I attended the TWU event where the Canadian Blood Services gave TWU organizers an award for high participation levels, and Jay’s video and speech were well received. The best part of the evening was when the MC gave Jay the large tray of remaining doughnut holes and brownies to take to the dorms and distribute to stressed-out, studying students. His popularity quotient was pretty high that night!

At the hospital this week, Jay was given an infusion of immunoglobulin to boost his own immunity. Doctors told him that this would be a once-monthly scheduled procedure, and that it has only been done for Haploid patients. He also had a checkup from an ophthamologist who examined his eyes and verified that some abnormalities detected in September had been completely due to the leukemia. His eyes are perfect now! Finally, Jay was told to start coming in only once a week to the VGH leukemia outpatient clinic for checkups. Once a week only! We must be getting close to the end!

April 8, 2016

Day 67. The past two weeks have been a gift of good weather and good health. Jay is down to 2 fairly routine hospital visits a week and off one immunosuppressant drug. He is (reluctantly) participating in a UBC exercise study that has him pretty sore once every 7 days, and next week he’ll begin a series of sessions with a personal trainer to help ease his body back into fitness. Many of Jay’s friends are nearly finished their university classes, so his social life will likely ramp up soon too. He has been busy working on the video and speech for his TWU event on April 12, planning the interior of the tiny house being built for his summer employment on Keats Island, and impatiently waiting for his hair to begin growing back.

Mar.28, 2016

Wow! Spring has burst out all over here. The weather is sunny and warm, and the grass is growing fast. This new life has special meaning for all of us this year! Jay continues to feel well and to be excited about re-emerging into his life. After so many months of treatments and isolation, this will be both a physical and mental process. Today Jay renewed his car insurance, and took his brother to school for the first time in two months. This week, as he comes off even more medication, he’ll be able to start driving himself to his own appointments. Freedom for him AND his mother! Speaking of appointments, we were handed a thick stack of appointment dates and requisitions from Jay’s bone marrow coordinator last week. All the “exit procedure” checkups of his body systems have been scheduled for the months of April and May. His 100-day bone marrow biopsy takes place on May 12, and his “exit interview” with his head oncologist is on May 31. Those will be happy days indeed.

Mar. 23, 2016

It seems as if Jay has turned a corner in the past 3 days. His energy is up and his trips to the bathroom are way down. Today marks the halfway point between the transplant and the end of the critical post-transplant period. We hope this means that he has weathered the worst of the symptoms and side effects! With new focus available, Jay has turned his attention to creating a video for an event honouring Trinity Western University’s involvement with the Canadian Blood Services. The CBS is giving TWU a special award for the high level of student participation in its blood drives over the past few years. Jay was asked to speak at the evening, so he is going to incorporate a video montage of moments he recorded in the hospital when he was actually receiving blood products. It is sure to be a unique tribute to two communities who have been instrumental in his support these past 6 months.

Mar. 18, 2016

Another week done. Today is day 45 of recovery, and Jay is feeling significantly better today than a week ago. While the BK virus will most likely stay active until after Jay goes off one of his immunosuppressant drugs on April 2, the symptoms are beginning to lessen, and he is getting better at managing them. Today’s hospital visit was encouraging since we were told that he can begin twice-weekly visits now instead of thrice-weekly. That’s one less long, stressful day of drives and stops and waits! As well, one of the nurses told us that she had just been to an international conference on bone marrow transplants, and haploid transplants were the hottest new treatment being studied and promoted. Trust Jay and Devon to be early adopters of what will likely become the standard procedure in the field!  

Mar. 13, 2016

On Friday, Auntie Theresa took the NASCAR driving shift into Vancouver and got Jay settled into a single room for his day appointment. Double-win! Jay was also prescribed some sleep aids that he desperately needed. (You know things are bad when he says “mom, I had the best sleep in two weeks last night. I fell asleep on the toilet!”) After two nights of moderately better rest, we can already begin to see a slight improvement in the utter exhaustion he was experiencing. Another two weeks and he might feel like a human again! With pain management under control, sleep improving, and some contributing medications slowly beginning their taper, we are hopeful that we will see some relief this week from the symptoms of this BK virus.

Mar. 10, 2016

With Jay’s permission, I’m going to try to describe how our day went yesterday.

Since his appointment at VGH was for 12 noon, we planned to leave at 10:30 to give us plenty of time to pull off the highway a couple of times for bathroom stops. (Day or night, Jay can only wait about 20-25 minutes between visits.) Each time we stop takes a minimum of 10 minutes, since Jay’s pain and other complications slow everything down. We ended up needing to pull over 3 times, and do an emergency front-door drop-off for the 4th. I was driving while he was on his phone, scouting the next possible highway exit as soon as we had finished the last one. I may or may  not have crossed three lanes and turned left in front of a bus to make one of these emergency stops!

His appointment consisted of bloodwork and the one-liter hyperhydration infusion. As you might imagine, super-hydrating someone with a bladder infection is not pleasant. During his last appointment, Jay was put in a room with 3 other people and no bathroom. To use the bathroom, he had to unplug his IV, roll to the adjoining public space and hope it was empty. For 3 hours. Every 20 minutes. So this time he waltzed in and pounced on a single room with a bathroom. We had brought an enormous orange outdoor extension cord from our basement to the hospital so that Jay could “park” in the bathroom and stay plugged in while he was being hyper-infused. A bit off-book perhaps, but you gotta do what you can to make things bearable. (The nurses probably thought he was setting up a Christmas tree in there!)

After the fluid was finished, we waited another hour so some of it could clear. Then I grabbed the car, and did a front-door pick-up so we could maximize our pee-free time in the rushhour traffic going home. An admirable intention, but the reality was ugly and gridlocked. We inched out of Vancouver, praying for a corner store or gas station to show up before Jay had to resort to watering someone’s lawn. I wove in and out of traffic and rain as best I could with my non-city-driver skills. After 1 hour 45 minutes, we had made it only as far as Steveston Hwy in Richmond. The line towards the tunnel was crawling, and we both knew there were no exits, or gas stations or lawns anywhere close. So we made the best decision of the day and stayed in Richmond for supper at Boston Pizza! We relaxed and ate and waited for the worst of the traffic to clear before we ventured back out.

A little more than an hour later, we were back on the road in the dark and the rain, but with a much less-congested runway. We made it home by 8:00. Only 9 1/2 hours total.

And we get to do it all again on Friday.

Mar. 7, 2016

Stats: Days since transplant = 34

             Number of different drugs Jay is taking = 11

             Amount it costs to park each week at VGH = $64.50

             Amount of fluid pumped into Jay at each appointment = 1 liter

             Number of extra bathroom stops needed to and from VGH with a UTI = 4

Average range of blood cell types compared to Jay’s current counts:

Mar. 5, 2016

After Jay’s last hospital visit, he was given some more powerful pain medication, and had the dosages of some of his immunosuppressants and steroids lowered. He was also given permission to adjust the timing of another medication to better suit his symptoms. With all those changes, this infection has become a little easier to manage. It is still causing lots of discomfort and the need to be near a washroom, but Jay’s eyes aren’t as glazed, he is eating again, and can leave the house for very short periods of time. It is not the full-steam-ahead recovery plan we had hoped for, but it is an improvement from the beginning of the week. Patience and endurance seem to be the traits we were meant to develop through all these treatments!

Mar. 2, 2016

Jay’s blood counts continue to make a steady progression upwards. We are very happy to see that. On the down side, he has developed a painful infection called a BK virus infection in his urinary tract. 80% of the population has this virus dormant in their body, but with a healthy immune system, it remains latent. With Jay’s extended period of time without any immunity, and now with the immunosuppressant drugs he must take to help his new bone marrow thrive, the virus has emerged. There are treatments to help with the pain, but the real cure would be to discontinue some of the drugs he is currently taking in high doses. We are praying that he can get the relief he needs to function for the near future until his own immune system defeats the virus, or he can taper off the immunosuppressant drugs enough to cause the virus to become dormant again. At present, he is pretty miserable and unable to do much other than rest and wait.

Feb. 28, 2016

We have made a couple of outpatient trips back to VGH already, and it was super to be so happily welcomed by the team on the other end of the BMT journey. Our favourite doctor there told Jay “you’re 95% of the way done now!”. So Jay will continue to drive in, have his blood tested, have fluids and minerals added as needed, take billions of pills twice a day, and work to increase his exercise time and intensity every day. I guess that’s called recovery, and it will take another 6-12 months, with the most critical time ending by May 12, our magic 100-day marker.

Feb. 25, 2016

All together under the same roof!

Feb. 24, 2016

He’s coming home! Tomorrow, Thursday the 25th. We are all overjoyed..

Feb. 23, 2016

There are rumblings that Jay might be able to come home on the 25th or 26th! Doctors are decreasing his IV meds, and he was permitted to leave the 15th floor for a short (masked) walk outside in real air for the first time in a month today. His whole demeanor was different after that peek into freedom! We are eager to be together as a family and continue his recovery from home.

Feb. 22, 2016

For the past two days, Jay’s White blood cell count was 1.0 so it’s slowly heading the right direction. He is still very tired and tentative around food, but he did eat some solids for the first time in many days. Now we just hope it stays in! Tomorrow marks 4 weeks since Jay was admitted to floor 15, and there is definitely a mental fatigue that comes with such a long incarceration. Tomorrow we are going to start asking more questions about what markers he needs to meet in order to be released.

Feb. 20, 2016

Day 18. White blood cell count was 0.8 today. Go Jay go!

Fighting back, Jay did three laps of the unit this afternoon, which is a lot farther than he’s moved in a few days. And while he was still only drinking clear liquids, he drank far more of them, and with much more enthusiasm. Small victories.

So how do we spend time together when energy is limited? Well today we looked up the history of jello on Wikipedia and revelled in some of the seriously bad flavours which have been tried and “retired”.  I introduced Jay to the concept of “jello 1-2-3”. --that most glorious dessert treat from the 70s. And we read more crazed imagery from the nutty mystery novel we started yesterday.

We also considered the large number of idiomatic phrases using variations of words to do with excrement. Seems like a perfectly logical way for a bed-bound teenage boy with serious GI issues to pass the time.

Jay now desperately wants to come home. But as he put it, “my intestinal ‘shituation’ needs to improve before that happens! “

 Feb. 19, 2016

The tests from the lab have come back negative for c.diff and Jay’s white blood cell count was significantly higher this morning than yesterday, so it seems that graft vs. host is indeed the cause of his misery. Yay! Doctors have a well-known protocol of steroids for his ailments and have put them in place. Jay perked up considerably today, and was able to have more extended conversations, listen to music and let us begin to read a weird mystery novel out loud. He is still on a clear liquids-only diet, which limits his intake to bad broth and jello. We have bought in some brand-name white grape juice to supplement, and asked the doctor if beer was included as an acceptable clear liquid. The doctor was flustered by this request, but it got a welcome smile out of Jay.

Feb. 18, 2016

When Jay was admitted at the end of January, the doctor told us he’d face harder days than he’d had in all his previous treatment. We are definitely experiencing those days now. Fever, diarrhea, and nausea have left Jay bed-bound for the past two days. No food or drink have left him weak and exhausted. There is no sugar-coating this suffering, and we all desperately wish it was over.

This evening, the head doctor made a special visit and told us Jay is experiencing one of three possibilities. First, he could have residual effects of the harsh chemo given prior to the transplant. Since most of the other side effects have subsided, we all find this unlikely. Second, he could have a c.difficile infection that is often associated with hospitals and antibiotic use. Jay has been tested for this infection twice already since his admittance, and both tests have come back negative, however we probably won’t find out the results of today’s test until Saturday. Thirdly, and most likely, Jay is experiencing acute graft versus host disease which ironically indicates that the transplant is beginning to “work”, but that the grafted cells are fighting with their new home. Since the timing of this illness is consistent with the expected time for engraftment, and since Jay’s white blood cells were countable for the first time in two weeks this morning, this seems like a reasonable guess. Tomorrow’s cell counts should indicate this direction with even more certainty. Thankfully, the doctor has decided to treat both c. difficile and graft vs. host for the next day or two until the source of the illness is pinpointed. So Jay should begin to get some relief tomorrow, albeit at the cost of his body being flooded with new drugs. They will discontinue the unnecessary medications as soon as they have confirmation that he doesn’t have c.difficile.

Feb. 16, 2016

It’s been a tough couple of days for Jay. His counts are not changing, which is exactly what the doctors expect at this point, but it’s still hard to be patient. He had a really bad nosebleed yesterday which just wouldn’t stop, so he received another platelet transfusion to help with clotting.  Just after that was settled, he was told he had to move rooms, which wasn’t his idea of a good time. During the move, the head nurse saw the little desk in the corner of his room (which has been there, and which he has used to do computer work these past 3 weeks) and insisted that he send that home. I’m sure she had her reasons, but since we have no car in Vancouver with which to transport the desk anywhere, it isn’t moving!

Jay’s new roommate was in very weak shape. He wasn’t even able to get out of bed to use the bathroom, AND he had GI issues. So every few hours he had to call the nurses to lift him up onto a commode and...the room smelled like a sewer. This happened twice during the very short night Jay gets uninterrupted, and his fitbit sleep recorder confirmed that he had had only 3.5 hours of sleep for the past two nights. By breakfastime, Jay had found a chair in the hallway, and was sitting outside his room, hoping the nurses could move one of them out. Clearly, this very sick man needed his own space. It took a few hours, but by the afternoon, Jay was back in his cleaned room, and the roommate had been moved to another place. We are hoping Jay gets a much better sleep tonight, since everything looks brighter when you are not exhausted!

Feb. 14, 2016

No upward mobility yet. But the protocol that had us all gowning, gloving and masking to visit Jay was lifted today. Anyone with even the hint of a sniffle can’t enter the 15th floor, but healthy visitors are now much easier to welcome.

Devon arrived home from his school trip to Quebec late last night, and he and Jay enjoyed a long visit this afternoon. Dale and I took the opportunity to organize our supplies for splitting shifts between Langley and Vancouver while the brothers shared Devon’s trip photos and some laughs.

Feb. 13, 2016

Today’s early morning blood-letting indicated the slightest of movement upward in red blood cell count. The doctors were quick to say that the change was not yet “significant”, but we disagree. The slightest positive step is significant, even if it is not substantial.

I got the chance to use the ancient VGH hair clippers on Jay today. He was tired of waking up with hair on his pillowcase and in his mouth. Can’t say I blame him. Now he looks like a very close-shaven army recruit.

Feb. 11, 2016

Counts still falling. Jay is feeling frustrated and feisty. Feisty is good.

“The doctors have a plan. These symptoms will pass. Your immune system will regenerate. You will recover and stay well”

Lather, rinse, repeat

Feb. 10, 2016

And somehow we are on day 8 post-transplant. I won’t say “suddenly” because each day has been laboriously earned. Still, here we are.

It seems as if Jay’s cell counts may have bottomed out. There really isn’t much lower they could go! So now we watch anxiously to see if they will hover in a holding pattern or begin the long climb back up. Jay knows his current symptoms won’t abate until he gets some help from a new immune system, and he is most eager to see that happen. But we also know that engraftment usually takes a bit longer with bone marrow transplants than with stem cell transplants, so we’ll have to be prepared for a few more days.

Soft food and patience until then.

Feb. 8, 2016

Today ended better than it started. In between the bookends there were several short visits, great pain meds, discussions about plans for backyard barbeques, more pain meds, talk about “Dr. Who” lego sets and more pain meds... Jay made a concerted effort to eat, and at the end of the day had managed to ingest pudding, macaroni and a banana. With the typical mouth ulcers suffered by transplant patients, it is hard for him to eat anything except the softest food, but that’s ok because we can find soft food. Maybe tomorrow we’ll try ice cream!

Feb. 7, 2016

Jay is currently experiencing all the expected side effects of the transplant treatment. That’s a nice way of saying he feels awful. Since his immune system is now obliterated, the normal bacteria that live in the body, and specifically in the digestive tract, are having a party with no chaperones. He hasn’t eaten anything solid for two days, since food hurts going in and coming out. There are antibiotics and pain medications that help, and these will be his friends for the next few days.

Feb. 5, 2016

Changing of the guard today. Darice home for two days, Dale on food-fetching and chess-playing duty.

Today was the first of two days of very targeted chemo. For the past 36 hours, doctors have let Devon’s imported immune system seek out and destroy any possible remaining cancer cells that might be left lurking in Jay’s body. The advantage of a haploid transplant is that the unmatched portion of the blood will react against anything foreign or dangerous. This doesn’t happen with a fully-matched transplant. The danger, of course, is that the unmatched portion might react too strongly against its new host body. So today the doctors  introduced a specific chemo to kill only the most mature cells from Devon’s marrow donation. These mature cells would be the most likely to cause serious graft-versus-host disease. Less mature cells are more easily convinced that their new home is a good place to settle. It is a finely tuned balancing act that the doctors will be monitoring very closely as we move forward.

While Jay was not able to be very active today, he did manage to keep some food down, play chess and watch some seriously weird superbowl ads posted online. Typically, the next 10 days or so are very rough for transplant patients as their own immune system has been destroyed, and the new one has not yet engrafted. So every day done is a good day.

Feb. 4, 2016

Today was an active day for Jay.

Yep, more than 10,000 steps. I think he finished the day at 12,000. If you’ve seen the limited walking space on the 15th floor, you will understand just how many boring laps this young man did! It all started when Jay was “let off his tether” to have a shower. When he had finished, he negotiated with his nurse to have some unfettered time to walk. Since movement is highly encouraged, and since there were no scheduled IV infusions, he was given the green light. At some point, whether he felt that he was being subversive or whether he just wanted to see if he could achieve an amazing 10000 step goal, he decided to keep walking.  He will be tired tomorrow, but today has been a day of freedom and accomplishment!

Feb. 3, 2016

Today was a quiet day for Jay. It is hard for him to get much sleep in a hospital with the noises, the interruptions and the tether to the IV hub, and he was longing for his bed at home. He ate a little, walked a little, watched funny youtube videos, and basically put another day behind him. Medically speaking, boring days are good.

Feb. 2, 2016

It’s done! The little red miracle bags were thawed, hung, dripped, and absorbed. There were no adverse side effects, as can happen, and all was fairly anticlimactic. Don’t get me wrong. I’m HAPPY things were anticlimactic. But deep down, I think we all hold out a wish that this was an instant cure. I do believe it will be a cure. But it won’t be instant.

Yesterday we found out just how rare this haploid transplant is.  At VGH, one of the leading hospitals in Canada for leukemia/BMT research, Jay is NUMBER 2. That’s right. Only the 2nd haploid ever done at VGH. Yikes! However doctors seem very confident that simpler related haploid transplants may soon become more common than complicated, unrelated-but-fully-matched transplants. Jay is now part of an official VGH study that will release its findings after only 10 haploid transplants are completed. Yes, we like living on the cutting edge.

We had a subdued celebration, but did enjoy some dessert in the form of brownies and date squares when all was over. Tomorrow continues the scrutiny of Jay’s blood to see how his body is responding to the foreign cells. His counts will hit bottom in a few days and then he’ll feel pretty lousy for another 10 days or so until his immune system begins to reboot with Devon’s superpowers. Patience and endurance until then...

Day 0

Feb 1.5 2016

Since it is 12:03 am, I guess I can officially call it transplant day! We are excited and a little scared of the unknown. The actual procedure won’t be intimidating--just like a large blood transfusion--but the significance is huge. It is scheduled to happen between 2:00 and 2:30pm.

Today (yesterday) was an official day of rest for Jay after the chemo and before the transplant. He needed it. His GI tract was not happy today, so he lay low and tried to keep food in. It was nice to be able to pop in several times during the day to bring him small things that he could manage to eat. He is trying hard to order things for his regular meals that feel tolerable, but so far the kitchen staff have a 100% failure to deliver any choices he circles on his menu sheet.  I almost wonder if the workers are bored and intentionally serving the exact opposite of what patients order. The mixups are seriously that consistently wrong!

We know many people are praying for the transplant procedure to go well tomorrow (today), and we are so thankful for all that support! More news in about 12 hours...

Jan 31? 2016

I’ve lost track of the days and the sense of normal. Dale stayed in Vancouver on Saturday and Sunday, while Devon and I headed back to Langley to regroup, get groceries, do laundry, tutor, do homework, and prepare for the week ahead. Then I drove back into Vancouver, gave Dale the car, and he drove back to Langley where he and Devon will be for the next few days. I will stay in Vancouver with Jay and a commuter card.

Jay is tired out. 6 days of chemo in a row have drained him of energy, and 3 days of ativan (to prevent seizures in rare cases) have left him feeling “empty”. He is eating smoothies and bagels and other non-hospital food, and we are happy to keep supplying him. Thankfully, there are many grocery stores, restaurants and bakeries in close walking distance to the hospital. My fitbit exercise tracker is very happy.

Tomorrow, Monday, is a day of rest for Jay. No more chemo. Hopefully he will be able to rally some energy for some walking or stationary biking. The transplant will happen on Tuesday, but we don’t yet know what time. Such an important day for us all! The countdown continues.

Day -2

Jan 29, 2016

Jay is through all the cytotoxic chemo and onto “regular” chemo, so he can receive short visits now. If anyone is in town for missions fest, scrub up and drop by the 15th floor! He is asking for food and managed to whup his dad’s butt at chess this morning. (Not that that is unusual). Nurses kept poking their heads in the doorway to see where the tormented noises were coming from, but soon realized that it was just Dale in the throes of losing.

Devon is a bit stiff and sore, but doing well. It will take several weeks for his blood cells to replace themselves, so he will get tired sooner until that happens. Tonight he will join his youth group at Canada place to view all the different camps and other Christian organizations that have displays.

Day -4

Jan 28, 2016

Today was a little less intense than yesterday. Dale and I visited Jay briefly in the morning while Devon rested in our Vancouver location, and then the three of us headed back to the BC Cancer Agency for Devon to have his dressing checked and changed. Honestly, Devon must have a double dose of the high pain tolerance gene passed on from the Wiebe side. We forced him to take a tylenol before he went to bed last night, but he probably didn’t need it! Mostly, he wanted to get the cumbersome bandages removed and get the green light to take a shower. And another milkshake. And a car. He is definitely “milking” this procedure for all it is worth.

Jay is battling nausea, so we are bringing him bagels and cream cheese which is about the only thing he can keep down right now. He is having lots of showers to make up for Devon’s lack. His bedding is stripped every 6 hours and we are taking his clothing back to our house to wash it daily. We have to gown up and put on rubber gloves before we visit. Thankfully, Jay was moved to a private room, so he now has the exclusive use of a nearby bathroom. With any luck, he’ll be able to stay here for a majority of his time at the hotel VGH. Being 18, he is truly an anomaly among the age 50+ crowd that make up the majority of the residents on the 15th floor, and he feels a bit awkward sharing a space.

Tonight Devon is going on an extended walk to the hospital and then out to dinner, and then back to our Vancouver home. Both brothers will be very happy to see each other for the first time after the bone marrow “harvest”. It’s hard to be patient for the positive results of  all these medical procedures, but we are trying to see every day as a significant step towards the transplant and the 100 days of critical care that come after. The whiteboard in Jay’s room shows a countdown to next Tuesday, much like anticipating a space shuttle flight. So today is -5.

P.S. 11,000 steps and 32 flights of stairs for Devon today. I’d say he is recovering well!

Jan 27, 2016

The little blue cooler has crossed the street! Yes, they really DO put organ donations in a lunch cooler to transport. The movies don’t lie, Devon did great, and is currently in recovery. We’ll bring him “home” soon and locate the promised milkshake as soon as he is settled.

Jay got his first dose of the special chemo today. Because of the strength of the dose, his skin will be oozing cytotoxins for the next three days, and he’ll have to shower and change his bedding every 6 hours. For that reason, he can’t have visitors until Saturday. But texts and facetime calls are always appreciated!

Jan 26, 2016

Jay is in.  His scorched-earth chemo begins tomorrow bright and early at 6AM.  The doctor cheerfully told us that some of the days ahead are going to be much harder than what we’ve been through so far.  Despite that, Jay was chatty and animated as we carried in his table and chairs, special pillow and full arsenal of electronics. He made us laugh as he pulled out earplugs and silently gestured that he’d like to use them to stuff the nose of his sniffling room-mate.

Devon, the wonder-donor-brother, also had his briefing.  He will go in at 8AM tomorrow morning for 3-4 hours, during which time they’ll extract roughly 1/8th of his marrow-rich blood to give to Jay in 6 days’ time. He is lobbying for a beer after the procedure is over, but will probably settle for a Fatburger milkshake.

So the “blood brothers” brandished matching hospital bands as we headed out for our last-for-the-next-month supper together tonight.

Tomorrow will be quite the day.

Jan 25, 2016

11:49 am. Just got news that the drug has been procured and is in the hospital. The head pharmacist from VGH drove to the airport herself to pick it up! We will hear more details later today, but most likely Jay will be admitted tomorrow.

Jan 20, 2016

Well, it’s only 10:47 am and we’ve already received at least 5 calls from the hospital today. It turns out that an essential drug for the transplant is tied up in customs and won’t be released for a minimum of two more days. (Since a haploid transplant is rarely done, the key drugs are not regularly kept on hand, and have to be specially ordered from Europe). Likely, Devon’s procedure will still go ahead as planned, and they will keep his cells “on ice” until Jay’s preparatory treatment catches up. But as my dad put it “you wouldn’t take apart a car unless you knew you had all the pieces on hand to repair it!” And since Jay is so much more complicated and valuable than a car, we will (un)happily wait for them to gather all the necessary pieces. Sigh.

12:17 pm update: Apparently the drug was mis-managed in some way at the border and has now expired. It will have to be re-shipped from Europe on Friday, and will arrive sometime in the next week. In the meantime, the hospital says that it will escalate an investigation to find out exactly what caused the mixup so it will not happen again. Devon’s procedure will go ahead on the 27th, and his cells will be frozen. The doctor assured us that this will in no way endanger the success of the transplant, and that more transplants than not are done with frozen cells. So now we unpack our bags and unwind our mental processes and try to figure out what to do with an unexpected week!

Jan 18, 2016

As a family, we spent the weekend back up at Barnabas family camp on Keats Island to attend board meetings and volunteer. It is truly the place where we all feel the healthiest, physically, spiritually and emotionally. Jay spoke with the director, and together they outlined some administrative and creative tasks for him to undertake this summer, as he is able. To have such a flexible work option is an incredible blessing for him, since applications for regular positions are already being accepted, and there is no way he can apply for a full-time job. The camp is looking to expand its housing options for volunteers, so we have decided to source and finance the build of a “tiny house” on a moveable trailer. Jay will be able to stay in this tiny house for whatever portion of the summer he is able to work, avoiding the crowded and more dangerously-germed housing he usually stays in while his immune system is still vulnerable. But we won’t tell the doctors about these plans!

We are frantically trying to finish the last preparations for our family’s division into 3 separate living units for the next month. We pick up keys for the rental room at noon on Wednesday, and Jay is admitted back to VGH later that afternoon. Jay insists that he is MOVING IN, and has borrowed a small table and begged a high-powered laptop from his brother’s stash. While it is likely that there will be days when he doesn’t have the stamina to do any of the video-editing projects he has lined up, we are thrilled that he is taking control of his environment to the extent that he can. He also met with the manager of the cafeteria, and set up a sort of “punch-card” food account where he can phone and order timely and preferred meals once a day or so. The lack of any control in a medical situation can be emotionally wearing, especially when you are an 18 year-old who wants desperately to be independent, so these small steps will provide some degree of choice and autonomy during the next month.

But tonight, Jay is still free of the IV and the needles and the procedures, so he hauled a sleeping bag to Trinity Western University, and is “sleeping” in the dorm room that still has his name on it from September, with the friend who was supposed to be his roommate all year long.

Jan 13, 2016

Three great things from our long day of procedures yesterday: The very last lumbar puncture was done, and it was the quickest and least anxiety-inducing yet! We got the results of the bone marrow biopsy and they are normal, which is necessary for the transplant to go ahead! We saw Jay’s old VGH “room-mate” from his September stay in the leukemia ward. This 24 year-old man had not been able to achieve remission with conventional treatments, so he has been part of an experimental drug study. Yesterday he got word that he has gone into remission, and so doctors will proceed quickly with a bone marrow transplant in February for him! ( And they were able to find 3 compatible donors for him, so he doesn’t have that stress.) There were lots of reasons to be thankful last night.

Jan 8, 2016

We made it through the week of appointments. The biopsy wasn’t fun, but it’s done. The bone-strengthening infusion was painless, but caused a day of fever after. The meeting with the oncologist was anti-climactic, but necessary. The skin specialist worked some magic on chemo-induced-acne, but caused discomfort in the process.The special dentist visit didn’t reveal any problems, but from sitting in the tilted chair for an hour, Jay’s neck muscles seized up at night. Whew! Positives and negatives to everything, but we still have a green light for January 20. Lumbar puncture was postponed until the 12th, so there is still that joy to look forward to! Now for a super weekend...

Jan 3, 2016

Like most of you, our holidays end tomorrow morning when the alarm clock rings! We’ve had a great time of rest, celebrations with family and personal projects. Jay had a December 31 appointment that included a lung function test as part of the preparations for his transplant. Lots of huffing and puffing proved that everything was in good condition, a bit of a relief after the rupture back in September. When he got home, he took out his saxophone for the first time since the summer, and gave his lungs even more of a workout! This week has many intense appointments for Jay, including a bone biopsy, a lumbar puncture, and a meeting with his head oncologist. We are hoping that everything points ahead to his January 20 readmission to VGH (back in the “clink” as Jay refers to it).

Dec 28, 2015

We grabbed a ferry to Vancouver Island on December 22 and drove to the cute town of Chemainus to spend 36 hours on a little pre-Christmas getaway. Of course we did NOT tell the doctors we were doing this, since they had tried to put the brakes on our Barnabas weekend in November! Then we made the trip home, celebrated Christmas with the Wiebe gang, and looked forward to some relaxing days. Jay’s counts on his Dec. 26 check were good, and he was given 6 more days free of appointments.  Yesterday, his back muscles were spasming very painfully, but they have settled down today, and we hope they are the tail end of the uncomfortable side effects of this “bridging” chemo round.

Dec 21, 2015

After 6 days off of treatment appointments, it was hard to go back to the sombre halls of the outpatient ward. But Jay’s cell counts were great, and with our favourite nurse, Patsy, the IV chemo went smoothly. Because Jay’s recoveries have been strong after each chemo, he was given another 6-day break from appointments. That was a super Christmas present!

Dec 16, 2015

So if you have radiation injected for doctors to do cardiac imaging, and they tell you that the residual radiation might set off alarms when you try to cross a border, they are NOT KIDDING! Yesterday Jay went through a battery of pre-op tests to make sure his heart is in shape for the upcoming transplant. He left the hospital, worked for several hours at Safe Software, and then drove with Dale to get gas and pick up some packages across the line. Before they had even arrived at the investigation booth, lights started flashing and sirens started ringing. Those Americans are serious about their terrorist detection! It took half an hour waiting for them to be released, so we are suggesting that Jay pick up Canadian gas for his car this next week!

Jay’s main oncologist also reneged on her promise of no more chemo before Christmas. Disappointing, but not particularly surprising. So Jay returns to dance with Poison IV on December 21. We are hoping he won’t be knocked down too badly, but we also understand that  the ultimate goal is to keep Jay in remission until January 20, and that this chemo will work to ensure that happens.

Dec 12, 2015

Yesterday saw Jay get through the last of the 4 dreaded lumbar punctures needed for this round of chemo, and we are all thrilled about that! Even happier is the report that his spinal fluid continues to be “beautifully clear” of any diseased cells. This week Jay also had bone density tests and dental checks in preparation for his transplant. Since his bone density is lower than doctors would like, and since many chemo drugs further attack bone density, he will have to get some protective infusion in January and every year in the future to prevent osteoporosis. Despite all these appointments, and lingering fatigue from last week’s chemo, Jay did some work at Safe restocking food supplies, and attended his last year’s high school Christmas banquet as a guest. We expect he will have more stamina to pursue these kinds of energizing activities in the next week. In the meantime, all four of us checked into the Fairmont Vancouver Hotel for two nights this weekend to enjoy a rainy but relaxing time in the city. Dale’s company Christmas party was on Saturday night, so while the adults partied on the 15th floor, 5 Lutz/Wiebe cousins went out to dinner and then watched movies in our suite.

Dec 8, 2015

Another story of the stem cell drive was in this week’s paper. A bit of a fuller story with front page pictures!  http://www.langleytimes.com/community/360494561.html

Dec 4, 2015

This week has been a bit of a slog for Jay. Drip chemo on Monday, and Lumbar punctures with spinal chemo on Tuesday and Friday. Add some new oral medication and you have a mixture of fatigue, nausea, sleeplessness and sad resignation. BUT this is likely the last full chemo round until January 21. AND after two more lumbar punctures next week, those should be finished too. So the light at the end of the tunnel, while faint, can be seen.

The transplant date has been moved up two days to January 27. This is because Devon is too large for the procedure rooms in children’s hospital, so they are treating him like the 6-foot tall adult that he is, and admitting him to VGH which has OR time on the 27th.

We now have a pretty comprehensive list of all the pre-op appointments for both Jay and Devon leading up to the transplant, and our December and January calendars are full! But during Jay’s long day in the outpatient clinic today, I listened to two older men who were both celebrating their “100 day” milestones post-transplant, talking about how good they felt. They looked wonderfully healthy, and this was a huge encouragement to me as we move forward to get to the other side.

Nov 27-28, 2015

Our whole family managed to sneak over to Barnabas Family Camp on Keats Island (where Jay worked as the videographer this past summer) for an overnight stay and a bit of volunteering.  Jay had wanted to return there to purge the office where he’d worked, so we took this opportunity to make it happen. Barnabas staff had invited islanders to the camp for a fantastic meal and a concert of Christmas music and stories by Carolyn Arends and Spencer Capier on Friday night. While Dale and I relaxed at the concert, Jay and Devon enjoyed the chance to start up the industrial dishwashing HOBART and clean up after dinner.

We also found out that Jay’s final chemo will start on Jan 23, in-hospital, and that his bone marrow transplant will take place on Jan 29. The time between then and now will be filled with many appointments, checks, and treatments, but also as many great family times as we can squeeze in.

Nov 26, 2015

Big day for Jay today! Trinity Western University held a drive for stem cell donors on campus, and students lined up from 10-3 to get their cheeks swabbed to register. In addition, a good number of Jay’s former classmates from LCS high school made the trip to TWU as well.  Friends from many of Jay’s “worlds” gathered in one place to show him support, and in the end, an amazing 248 new donors signed up. The organizers had hoped for 100! While we understand that the time it takes to process these new donors means that they will not benefit Jay directly, their willingness to put themselves on the donor list will undoubtedly save lives. Yes, it was a very very good day. And the 600 cookies Papa Walter baked and brought to the event made it even sweeter. CTV news came to interview Jay and other students, and you can see the TV segment here. The Langley Advance newspaper will run the story next week.

http://www.ctvnews.ca//video?clipId=758559 

Nov 23, 2015

Today saw Jay participate on a live radio talk-show with two members of the Trinity Western University community who are helping to organize the stem cell donor drive for November 26. Although the interview was short, the entire production experience was unique for him, and it was encouraging to be part of such a positive endeavour. You can listen to the show with the link below.

http://cirh.streamon.fm/listen-pl-242

Other than that, we are back to basic bloodwork checks every second day. Jay’s counts are slowly beginning to recover, and we anticipate beginning the next chemo round on November 30. We have booked a two-day December holiday for the family to enjoy together, and have rented a B and B cottage within walking distance of the hospital for the month of January. We will tag-team staying there to help avoid so many hours in the car, and to facilitate several shorter visits every day. We anticipate this will be better for both Jay and us, and we hope to emerge from the marathon hospital stay with our bodies and spirits strong.

Nov 18, 2015

Our heads are still spinning from the 45-minute meeting we had with the oncologist and several supporting staff members. After 2 1/2 months of very little news, we now have a plan and a general timeline. Searching the bone marrow and cord blood registries yielded no perfect match for Jay’s unusual tissue type. The transplant team looked at the possibilities and concluded that a HAPLOID transplant using Devon’s related genes, which are a 50% match, is Jay’s best option. This transplant will necessitate some slightly different procedures and drugs than a matched transplant, and is certainly not as common, but has been done successfully. In fact, the doctor mentioned that a haploid transplant was being done today on the Leukemia ward where Jay will spend 4-5 weeks starting early January. The doctors will remove bone marrow fluid from Devon under general anaesthesia instead of stem cells from him while he is awake. (This will leave Devon with some residual soreness, but no memory of any extraction, so he’s all for being knocked out). Our sons will become true blood brothers, with Jay carrying Devon’s DNA in every drop of blood! We will continue with chemo rounds and recovery for the next 6 weeks, enjoy Christmas together, and then prepare for a marathon hospital stay. We have a goal to walk toward, and we will begin that walk tomorrow.

Nov 17, 2015

Tomorrow we have a scheduled meeting with Jay’s oncologist at 3:30 where we expect to hear the best option the transplant team has worked out for Jay. We are eager and anxious at the same time, hoping for a clear decision and a short timeline. We are also excited to announce a stem cell donor drive organized jointly between Trinity Western University and OneMatch Stem Cell and Marrow Network. It will take place by the TWU cafeteria between 10am and 3pm on Thursday, November 26. Stop by to support the drive or to put yourself on the donor list if you are between 17-35 years old. It may not help Jay directly, but it may save the life of someone else.

Nov 15, 2015

Tomorrow is Jay’s birthday, and we are so happy he was born! His day will include a mid-day check at VGH, but we plan to celebrate with a family/friend dinner in the evening. This week will see his blood counts hit bottom again (thanks to last-weekend’s-chemo) and then slowly begin to climb. We are beginning to understand the patterns of what to expect. We haven’t heard any more news about his transplant, and this lack of ability to plan or even imagine a path forward is emotionally draining for everyone, so we are going to push for some more information this week. If it is likely that we will be waiting for a significant amount more time, Jay is ready to begin some longer projects to maintain purpose and growth.

Nov 8, 2015

5 chemo doses down, 2 to go. Staying with friends in Vancouver these past 3 days was definitely the way to go. We had a 3-hour window each afternoon where we could get out of the hospital and “chillax” with music, food, naps and peace.  Jay is managing the physical side effects well, but it is more difficult to manage the feelings of frustration at returning to drugs and procedures that, temporarily at least, make him feel way more sick and constrained than he has been feeling for two weeks. I can’t argue with those feelings at all, but trust that something invisible is indeed happening towards his ultimate recovery.

Nov 3, 2015

During our VGH appointment yesterday, we met briefly with Jay’s oncologist who informed us that Jay’s tissue type seems to be very unusual. Initial searches of the international banks of marrow donors have not turned up a perfect match. Since this may mean that he will have to receive a less-than-perfect match, they are now beginning to search the worldwide bank of cord blood donors. Apparently, stem cells from cord blood is less likely to trigger rejection from the recipient, since these cells are less mature than stem cells from an adult donor’s bone marrow. This is not the news we wanted to hear, but as Jay quickly informed me “It does no good to worry, Mom!”. True, but terribly hard to put into practice. In the short term, his next round of chemo will start on Friday the 6th. Since it requires 5 consecutive days of long outpatient procedures, we are going to book into a friend’s “hotel” room and stay close to the hospital for much of that time.

Nov 1, 2015

Three uneventful appointments and one appointment-free weekend later, Jay is still feeling great. He enjoyed various Halloween festivities, including trying a variety of new hair looks with costume hats and wigs. Since he’s on the last week of the recovery phase of this chemo round, we all plan to get flu shots to boost our immunity going into cold and flu season. No news about a meeting with the head oncologist yet, but we are still hopeful that will come soon.

Oct 25, 2015

Wow, what a weekend! To have Friday, Saturday and Sunday off from treatment was amazing, and Jay took full advantage of the time. He was a whirlwind of social activity from Thursday night until late Sunday afternoon. If he felt tired, he didn’t show it or tell us! Mental health is a huge component of overall health, and since Jay is energized by people, we know these opportunities to be with friends give him strength to weather the times when he can’t.

Oct 22, 2015

We had the shortest ever visit to the outpatient clinic today, ( 4.5 hours door to door) which gives you an idea of how much time we’ve been spending at VGH.  But better than that, we actually got a schedule of appointments up to the end of next week! Having been living day-to-day for so long, knowing an 8-day runway feels revolutionary. One doctor on call  mentioned to Jay that they thought his transplant plan might be in the “contacting potential donors” phase. So no one is really saying anything with any certainty yet, but like the “remission” rumors, it seems as if a vaguely-planned November meeting with Jay’s head oncologist could have some solid news. Maybe. In the meantime, Jay is eating, sleeping, driving, and arguing with us again. Ahhhh, how we have missed that!

Oct 20, 2015

I could tell you how, certain that Jay would be released during morning rounds, Dale and I headed into Vancouver extra early and fought the morning commuters. Or how Jay’s toxicity score was .02 unknown units too high, so he had to endure more antidote drip before taking another early test at 11:30. Or how the test wasn’t analyzed until 3:00 so he could be released. Or how we then had to wait for the pharmacist to return from her break to give us all the drugs he needs to take at home. Or how we had to pull over twice in heavy traffic on the way home to allow him to upchuck outside the car. But I won’t! I WILL tell you that a very happy family is all together again tonight, and one very tired young man is sleeping in his own bed, using his own washroom, unhooked from any beeping I.V. device. PEACE.

Oct 19, 2015

Thankfully, Jay was physically feeling much better today. He managed some sleep and some food, and all those things help immensely. His toxicity was still too high for him to come home, but we have pledged to spring him free tomorrow no matter what. In the late afternoon, there was more fuel for his simmering disgruntlement when he was “banned” from using his room’s toilet because his roommate is experiencing G-I issues. Hmmm...so now he has to leave the ward and go into the public area to the use the public toilet...every 45 minutes? Does something seem wrong with this picture???? Good thing he has a couple of visitors coming this evening  to take his mind off his hotel room shortcomings, and the exciting election results to discuss with all the nurses. Jay, we will bring you home tomorrow!

Oct 18, 2015

Some days are just hard, and there is no way around it. Today was one of those days. Jay was nauseous, exhausted, anxious and angry. Totally understandable, and it was heartbreaking not to be able to do much to comfort him either physically or mentally. Thankful for anti-nausea drugs, and sleeping aids that will help him get through another night. We will know tomorrow morning if the toxicity levels in his urine have gone down enough for him to come home.

Oct 17, 2015

Jay felt much better today, and was increasingly interested in eating. But more than that, he was determined to drink lots in order to flush the toxins from his system quickly and be allowed to come home. (The nurses were constantly monitoring his...er...”output” to check the toxicity levels) We brought in homemade turkey soup to help with both of these goals. In the evening, Dale, Darice and Devon headed over to Stanley park to walk in the Leukemia Light the Night fundraising event. We were blown away by the support of our friends and family, and huge numbers of Safe Software staff who joined us! The Safe “Jay” Walkers raised over $17,000 for Cancer Research! Jay joined us via Facetime, and we had a hard time keeping the tears away, seeing how many people are walking with us on this journey.

Above: The Safe Jay Walkers Team

Below: Time lapse of the walk by talented cousin Dryden Wiebe

Oct 16, 2015

The chemical drip continued for a full 24 hours into the evening today. Jay felt no violent nausea or pain, just a general malaise and restlessness. When he was finally freed from the meds, he ate a double portion of macaroni and cheese, one of the hospital meals he has been able to special-order from a secret list one of the nurses slipped him. While this was going on, Jay’s room-mate received a bone marrow transplant in the same room. It was good to hear him happy to get this “second birthday”, and we started to make plans to celebrate and mark this kind of second birthday with Jay when he gets the same gift.

Oct 15, 2015

The “vampires” as Jay calls the early-morning nurses, took his regular blood sample at 5:30am and the day continued with many different chemo drugs. While we know they are purposely cytotoxic, it still makes us gulp when we see nurses suit up with protective gear to administer them directly into his veins. We brought food, and completed several political polling questionnaires together to pass the time while “poison I-V” performed her duties. In the evening, Jay texted that he was a little nauseous, but not too bad, so it seems he weathered the chemical warfare pretty well.

Oct 14, 2015

Yesterday’s meeting with the doctor confirmed that Jay is now in remission, and that  he is ready to move on to the next round of chemo. Yay for the remission! Not so yay for the chemo. Today we received a call from VGH asking us to bring Jay in to get admitted and prepped to start chemo tomorrow. While we are happy to get going, Jay is pretty disappointed that he will miss the walk for leukemia at Stanley Park this Saturday night, since he’ll have to be in the hospital for about 4 days. The “Jay-walkers” are showing us amazing support with their fundraising efforts!

If anyone wants to visit Jay during this short stay, please contact him first to ensure things are okay, and he’ll book you in.

Oct 12, 2015

Jay had an appointment this morning which measured his blood cell counts, and noted that they were heading back to “normal” levels after the “robust recovery” phase. He has also put on a good amount of weight. (Thank you thanksgiving dinners) Tomorrow we will meet with the doctor who will lead us through the next phase of his treatment plan. We hope to hear the “R” word spoken out loud.

Oct 7, 2015

Tonight we all went ON A SCHOOL NIGHT to see “The Martian” movie. It was great, and for a few wonderful moments, we forgot our troubles.

Oct 5, 2015

Back to VGH today for the highly awaited lumbar puncture and bone marrow biopsy. For a change, these went off without a hitch and Jay is back home recovering. The air in his chest is dissipating and not causing him any pain, so that is good.

We did find out that Devon is not a bone marrow match, so the transplant people will now be searching the world for a match.  We don’t have any idea how long this process will take. Jay will be starting a second chemo round sometime in the next couple of weeks. We’ll get a few hours of warning before he’ll enter hospital for a 4 day stretch, followed by frequent follow-up visits for the round.  No long term planning in this house!

And while the doctor did NOT commit to saying Jay was in remission (they have to analyze the bone marrow sample to verify) she DID say “there is no reason to believe that he is not in remission”. So if you can follow the double negatives, she means that the way his bloodwork has progressed in the past few weeks would be consistent with someone in remission (which means the disease is under control but not  completely cured). But we can’t yet be certain.

Oct 2, 2015

Home again! We are all tired, but happy. Jay’s pain is gone, and the air still trapped in his thoracic region will be reabsorbed in the next week. He still has a bit of a nasal twang when he talks, and he can hear crackling as the air moves around, but what is still being seen as a “random” event is not likely to recur. From being denied food and water for 18 hours, and then drinking some vile “imaging” liquid, Jay has lost some more weight. So recovery really and truly includes lots of eating. We have ordered a low-key weekend with a side of fries. Major tests, including lumbar puncture and bone marrow biopsy, are scheduled for early Monday morning.

Oct 1, 2015

What a difference 24 hours makes.  A late night mis-diagnosis that Jay’s Hickman line had slipped into his heart caused Jay to be moved to the Cardiac Unit for a complete-lack-of-sleep-night-of-monitoring, while being prepped for some major work.  But when we arrived to see him around 10 AM, they had run some new tests and realized that there was no issue with the Hickman line at all, and that his throat and esophagus were not leaking air.  The thoracic specialists concluded that Jay had a minor case of spontaneous pneumomediastinum. Basically, a lung must have ruptured and allowed some air to escape and get trapped.  Unscientifically, Dale wonders if Jay’s general weakened condition as a result of the chemo and leukemia combined with the singing he did at the Terry Fox Run started it -- and then the longer walk Jay had before his blood test aggravated it. In any case, his pain from the air was almost completely gone by the end of the day, and though he was very tired from the lack of sleep, that didn’t stop his parents from cutting loose and smuggling in some FatBurger as a hearty supper for a very hungry and tired young man.  The plan is for him to get kicked out of “thoracic park” early tomorrow and return home again.

Sep 30, 2015

Fairly big setback today. Jay was scheduled for a regular blood test checkup at VGH for the afternoon.  After cheering on his former schoolmates this morning during their Terry Fox Run, he drove with his Dad in for the “routine, short” checkup.  However, during the drive he complained a bit about neck pain, and then complained that he couldn’t take deep breaths.  During the checkup, he highlighted this symptom on a checklist he was given.  After a series of escalating tests, it was concluded that he has some amount of rogue air in his chest cavity where it shouldn’t be.  So he was readmitted back to VGH where they will work hard in the next hours to figure out where this air is coming from and what to do about it. Please lift him up in your prayers.

PS: His blood work was great though.

Sep 27, 2015

It’s been fantastic having Jay home, watching him joyfully appreciate his freedom and comfort and friends. He has been amazingly energetic, going on walks far longer than he probably should, but happy for the aching muscles that are starting to strengthen. For the first two days, he was up making himself breakfast long before we were doing anything useful! Today we went to the outpatient chemo ward for the first time, and his bloodwork is showing “robust recovery” which means that some of his counts are even higher than normal, as his system goes into overdrive to reboot cell production. At this point, we don’t ask many questions. “robust recovery” sounds good, and we’ll take it!

Sep 24, 2015

Almost 3 weeks to the minute after being diagnosed and sent to VGH, Jay was discharged and has come home. His immune system is severely compromised and he is “clinically malnourished” (hospital dietitian’s words) after his 3 week stint. He’ll still be heading back to VGH frequently for chemo and tests, but in the meantime we’ll be working hard here at home to put meat back on his bones and strengthen him up for whatever comes next. His overly protective parents will be doing their best to keep him far away from anyone with any colds or fevers. Mostly, we’ll be enjoying each other and taking things slowly.

(Below picture taken a few minutes after arriving home today)

Sep 23, 2015

Well, today was the day we said a temporary goodbye to Jay’s head of hair. We knew it was inevitable, and that it would be emotionally challenging for all of us. Jay continues to impress us with his strength of character through these very hard moments. We are learning lots from him! In the afternoon when we had left, Jay took a longer walk with “Ivy” his constant companion, until she ran low on batteries and started to beep. Then he texted us that Elon Musk needed to upgrade the hospital with some TESLA battery packs.

Sep 22, 2015

Jay had no headache at all from the lumbar puncture, but he was still very cautious until midday. Then we nagged him to get up and walk around with us, which he did at a pretty brisk pace. He spotted what looked like a family pizza party in one of the empty rooms, and when his uncool parents left, Jay doubled back and hung out with these fine people for half an hour. The fact that they insisted on giving him pizza was a bonus. Really.

Sep 21, 2015

Although we still don’t know if Jay will come home this week, the signs look promising. Today the med specialist came by with a list of all the meds he’ll have to continue taking as an outpatient, and the directions for their use.  Jay also had his second lumbar puncture, and he did some things differently immediately after the procedure which seem to have allowed him to avoid the huge headaches he got last time. Yay! We were showered with various gifts of a fruit bouquet, cookies, hummus and boxing gloves. Yup, you never quite know the ways our fantastic supporters will show they care!

Sep 20, 2015

Despite another round of chemo today, Jay was feeling good. And hungry. He ate two full  dinners in the three hours we visited him, and drank a large protein/fruit smoothie. This kind of eating has managed to help stop the weight loss, but he will need a lot of gradual, increasing exercise to build back his strength and muscle. We are all so eager for him to come home, and are spending lots of our time together talking about the projects Jay wants to tackle in this unexpected season of “time”, as he has the energy.

Sep 19, 2015

Good wishes from lots of previous classmates brightened Jay’s day, as did a visit from long-time family friends who regularly live in Bishkek, Kyrgyzstan! He was feeling good, and finding the positive strength we know he will need for the long haul. Tomorrow is another chemo treatment, so he will be very tired on Sunday afternoon and Monday. The calendar is blocked out during that time to allow him to rest. If anyone has ideas for stylish headgear, Jay is accepting nominations or gifts. (No hard rock, biker do-rags, though, We don’t want to scare the nice nurses away!)

Sep 18, 2015

Yesterday was Devon’s birthday, so we brought in some cupcakes, fake candles and a few gifts for him to open in the hospital with Jay. Today he finally got his blood taken to get tested to see if he can be a marrow donor. We likely won’t know for a few weeks. Jay enjoyed jamming with his uncle Kevin yesterday, but wasn’t feeling too energetic today. Hospital life is definitely becoming trying for him.

Sep 16, 2015

So today we met with the team of doctors who have ascertained that the best treatment plan for Jay necessitates a bone marrow transplant. They will search for a suitable donor, and likely schedule the transplant for the next few months. When the transplant happens, Jay will have another long hospital stay, but in the shorter term, we are praying he is able to come home in 7-10 more days. We promise that when he does come home, we will supply him with much more appetizing food than the dry “pesto-chicken” burgers he got for lunch!

Sep 15, 2015

A friend who works near the hospital kindly dropped off a thermal bag of amazing food for Jay this morning, and then joined him on his first laps of the unit. A great way to start the body reboot! Jay was still a bit woozy from time to time, but it was manageable. Highlight today might have been receiving a team-signed, genuine BC Lions helmet from the head coach, who happens to be our next-door-neighbor! Tomorrow the top VGH doctor will meet with all of us in the afternoon to map out next steps in Jay’s treatment. We are hopeful and looking forward to getting a clearer vision of what the future will be.

Sep 14, 2015

Jay spent lots more time upright today, with lessening discomfort. He has lost 6.2kg, so we are even more motivated to get high calorie, nutritious food into him, and to encourage gradual walking for all his muscles. He finished listening to his gripping audiobook, so we are open to hearing recommendations for other titles he might enjoy. At the very end of the day, he was moved to a shared room. For someone who likes to control his environment, this was not a popular decision, and will just add to his increasing desire to come home soon!

Sep 13, 2015

The headaches were finally gone, just in time for another dose of all the chemo today. So Jay was still lying low to fight off the “woozy”. But food is of continual interest to him, and that’s a good thing. (He can hardly wait to come home and bake bread.) He had the best sleep of his hospital stay last night, complete with wild and crazy dreams. There must be some great hallucinogens in the drug drip he is getting!

Sep 12, 2015

Busy day for Jayden with many great friends visiting.  These visits definitely lifted his spirits.  He still is experiencing headaches if he stands or sits up, and is very sensitive to light, but this continues to improve slowly.

Sep 11, 2015

Off to a good start! (We found a delivery breakfast place that we may use to supplement hospital food -- Jay is a big breakfast guy traditionally).

Jay’s headache is still there if he is upright for any amount of time, but there was  improvement since yesterday and so that trend is looking good. Primarily it was another day of total bedrest.

Overall, his spirits were high today, and he was more energetic.  I think we’re settling into a period of “boring”, which is very, very good. Highlights of our visit including reading excerpts from Darice’s grade 9 diary that she had recently found.  Jay has plans to turn it into an angsty audiobook. And at the end of the day, uncle Kevin brought in his amazing, tiny, travel-sized guitar for Jay to play and serenade all the nurses. Perfect from a semi-reclining position!

Sep 10, 2015

Jay’s morning comment was “Freaking pitiful breakfast here” so we’re guessing he’s got a good appetite today. We’re allowed to bring him in smoothies again now so will do that first thing...When we got in around noon, he was able to talk and pun around with us much more than yesterday, but his bad “lumbar-puncture” headache continues. As long as he is lying down, there is no pain, but sitting upright or standing is very uncomfortable. So his free time today will be spent listening to the audiobook “The Martian” by Andy Weir. It’s scheduled to come out as a movie starring Matt Damon on October 2, and we intend to see it together.

Sep 9, 2015

Jay has now completed the first multi-faceted round of chemotherapy and is definitely very tired and sore.  He was pretty much bedridden today but we were advised that the effects of the dural puncture (which has made his back sore and given him a headaches -- but also tested later that he had 0 bad WBCs in there which is good) should ease by tomorrow.  From what we understand, he won’t be getting any more treatments now for at least 3 days, so he should be able to begin a first round of recovery.

His last injection for the next while was an inter-muscular one. He was happy when it was done. WBC 0.6

Sep 8, 2015

They have been hitting him hard with lots of chemo and nasty procedures these past two days. He is a trooper, but was very tired last night. He has had a lot of visitors as people just found out and wanted to see him before the school year starts in earnest. We have heard that VGH has a very unique "no nausea" policy which means that they go to great lengths to help find solutions to help patients not get sick after chemo, and it seems that is working well for him. He has eagerly accepted our offer to bring in some kind of food every day, and we will continue to do so.  Devon will be tested this week to see if he is a compatible bone marrow donor. Not sure yet if Jay will need that, and if Devon is not a match then they would use the marrow registry to find a match.

Jay also got a dural puncture to shoot some chemo into his spine, or do a test - we don’t know which. This gave him headaches and backpain.

Sep 7, 2015

WBC count 3.3 in the morning,  1.8 in evening. Serious chemo still underway.

Sep 6, 2015

First serious chemo began today.  WBC at 8.8 in morning, 6.5 in evening.

Sep 5, 2015

WBC Count 72.

Sep 4, 2015

The results of the bone marrow test confirm Jay has T-ALL (T-cell acute lymphoblastic leukemia). We get a briefing as to the treatment plan, which begins with a series of hard chemo treatments once the initial WBC count drops to a low amount. Typically the patient stays in hospital for 21 days or so during this first round.  The idea is to kill off ALL WBC, and then let them come back. If we did get them all, the ones that come back will only be healthy ones.

Jay continues to be pumped full of saline solution to flush out the dying WBCs as medicine takes effect, and gets blood tests every 6 hours.  His WBC count has dropped to 320 today.

He also got a “Hickman line” inserted, which was quite an invasive process but will allow for easy IV for the next while. Definitely his level of discomfort is increasing.  His low level of platelets resulted in him having trouble clotting after the Hickman line insertion, and so they gave him a platelet top-up.

Sep 3, 2015

At 10:30 AM Jay gets a call advising him to bring his parents down to the doctor asap.  We arrive with Devon and Jay at 1PM, but they are not ready to see us so we go to Subway for a quick bite.  While Taylor Swift’s “Bad Blood” song is playing, Dale’s cell phone rings and it is VGH advising us to come immediately to get Jay checked in to the leukemia ward.  We rush back to the doctor’s office, find out some details, and head over to the ward, our heads spinning.  They immediately do a blood test (WBC count 406) and bone marrow test on Jay, and get him on some mild chemo to begin knocking the WBC count down in a controlled fashion.  Though he looked 100% fine, his blood was very severely out of balance and in particular had a great amount of extra potassium and phosphorus in it as a result of the WBC’s being so numerous.

(Below picture taken a couple hours after diagnosis on Sept 3, 2015)

Sep 2, 2015

After complaining of some swollen lymph nodes and being quite tired on a hike a few days before, Jay visits the doctor, who sends him immediately to get a blood test. We later learn that his White Blood Cell count was 300 this day.  Normal range is 4 to 11.