The Story Behind the Aug 11 & 14 Updates

The last couple of weeks have been a lot; I am not even sure where to begin. I guess I will start with the good. I ended my last post, before this mess, with us off to a friends' place on the lake where Eric was looking forward to tubing. We were supposed to be there for a week, but only ended up staying half that long. Eric was so looking forward to tubing, swimming in the lake and playing Telestrations, and he did get to do all of those things, though not quite as much as he would have liked. 

On Wednesday, Eric and I took a float plane to Vancouver for his scheduled platelet transfusion. It was a beautiful day and a smooth ride. We got to the hospital and since we had time, he actually got 2 units of platelets to prepare him for tubing the rest of the week. He was still coughing and hoarse at the appointment. I didn't really feel like he had gotten any better or worse since we'd been in clinic the Friday before. His Oncologist wanted an oxygen saturation monitor on him to make sure that he was still getting enough oxygen. It was on the whole appointment and his saturation looked pretty good, so we headed back to the lake. 

That evening Eric was struggling. He was having trouble sleeping and said he couldn't really catch his breath. We had a very long day and he stayed up too late, so I figured he was just worked up from that. In the morning, Chuck went golfing in Sechelt and I slept in. I had a cup of tea on the deck and Eric was playing on his iPad, but he told me he didn't feel like he could breathe. He'd had that O2 probe on all day the day before so I knew he was fine, but thought maybe we could use some reassurance. I called the nearby Pender Harbour Health Center and asked if we could come in for an O2 check. They agreed so we left Joel behind and Eric and I drove to the clinic. I truly thought we were just going for a quick check and heading back to the lake. I didn't bring a thing with me, only my purse. Luckily I had told Eric that he could bring his iPad in case there was a wait at the clinic. We arrived just before noon (their lunch break) and went right into a room. The RN there put an O2 probe on Eric and she saw his oxygen at only 75%. She got an oxygen mask on him quick and he perked up. From there, I called Eric's Oncologist to ask what he'd like us to do. Between the Oncologist and the RN, they decided that we should go to the Sechelt Hospital via ambulance, but no lights or sirens. We were thinking it was the cold, maybe exacerbated by the forest fire smoke in the air. We figured a breathing treatment, like for an asthma attack, and we'd head back to the lake. I didn't even call Chuck. 

At the Sechelt Hospital ER, they did start with nebulized ventolin, but it didn't really seem to be helping and was making Eric feel light headed and nauseous from the racing heart side effect. They did a chest x-ray there as well and the doctor spoke with our team at BC Children's Hospital before coming to tell us the plan. There was a new finding on the x-ray: air in Eric's chest cavity outside the lungs, and they wanted to move us to Vancouver. She says the good news is that we get to go by helicopter! At this point, I was still not worried. Apparently my baseline is so broken from the last almost 4 years that an air ambulance doesn't even get my adrenaline going. By this point I had at least called Chuck, but that was mostly just so he could get the keys from me to pick up the car from the Health Center on his way back to the lake. When I learned we were going to Vancouver, I called him again and asked him to pack bags for Eric and I and zoom back to Sechelt. It's about 45 or so minutes and the air ambulance was going to be about the same so it was 50/50 whether I would have only my purse or if I would have a toothbrush and underpants also! Luckily Chuck arrived just as the helicopter touched down. Unfortunately, he packed so frantically that I did not, in fact, have any underpants, but I did have a bathing suit!  

The air ambulance was actually really cool since they had to fly at low altitude, less than 500 feet, because of the air in Eric's chest. We had the most amazing views flying low over the ocean and it felt like we could practically reach out and touch the buildings downtown. There's a helipad on the grounds (not the roof) of BC Children's and Women's Hospital, so then you actually go by ambulance around the building to the Children's ER. We arrived at 6pm and went in different doors than normal, but once inside it was all familiar again. The ER doctor came right in and did an assessment. Eric continued to use oxygen on and off as needed while resting with his iPad. We were waiting for the Pediatric Intensive Care team and the Oncology team to do an assessment to determine where he would be admitted. The Oncology team came and felt that he could be treated on the Oncology ward (T8). Duh. Of course he could. He wasn't that sick, just needed a little oxygen and he'd be fixed right up. Eventually the Intensive Care team came by as well and they did say they felt he could be treated on the ward. Again, duh. I did learn a new word from them though: pneumomediastinum. That was Eric's diagnosis from the x-ray. It is air in the chest cavity between the two lungs.    

We arrived on T8 (the Oncology floor) around 11:30pm. It took some time to get settled, but eventually Eric fell asleep. I sat and watched him breathe for awhile and then tucked myself into bed. I didn't have my mattress topper so put down 5 of the thick hospital blankets as a cushion. It didn't work. I fell asleep for about 20-30 minutes but I woke up to Eric coughing. Within 30 minutes Eric was working really hard to breathe. It was very noisy and his entire chest, abdomen and shoulders would curl in, then raise up and then come crashing down, including his head bobbing like he was falling asleep, but that wasn't the problem. Eric's face was also extremely swollen, like stung by a million bees swollen. Believe it or not, this is when I started to worry. A little about the breathing, but a lot about the swollen face. I guess it was finally the cue for my brain that something was not right here. The T8 doctor and a respiratory therapist came in. They tried more inhalers but they weren't working. The intensive care team was called for another consult and a portable x-ray was ordered. Next thing I knew a bunch of people from the PICU (Pediatric Intensive Care Unit) were here to move Eric downstairs to T4, the PICU. 

It was our first time in the PICU. Actually we'd had a lot of firsts in the less than 24 hours that had passed. First ambulance ride, first helicopter ride (for Eric, first air ambulance for me) and now first visit to the PICU. At this point, I was done with firsts, but unfortunately we were in for a few more. By this point it's the wee hours of Friday morning. The PICU room is large and has a recliner and parent "bed" just like upstairs, but it also has a lot of fancy equipment and is a fish bowl. Most of 3 of the 4 walls are glass looking out to the hall and also into other rooms. Eric asked me for some water and I gave him a sip. Someone came from outside the room and said to hold off on the water for now please because he might be having surgery?!?! Eric was able to sleep for another couple hours while I sat in the chair and watched him. An anesthesiologist came in early in the morning, maybe 7am-ish, to tell me that they were going to take Eric to the OR to insert a breathing tube and, while in there, ENT was going to do an MLB (microlaryngoscopy and brochoscopy) to see if they could find the cause of the pneumomediastinum. The anesthesiologist told me that I could not come with Eric. This is when I completely fell apart. I have always been allowed to go into the OR, dressed in gown, booties and hairnet, until Eric is asleep. I was worried that he would be afraid because he finds the OR intimidating with its size and all of the equipment, and this was all happening so fast. Somehow one of the Child Life Specialists from T8 managed to insert herself right into the OR. She didn't ask, she just went, and I was so grateful that Eric had a familiar face with him. I got a phone call during the procedure that Respirology was going to attempt a lavage (clean out) of the lower airways. 

Eric came back into the room, still sedated, and now intubated with a breathing tube. Our social worker had come to sit with me while he was in the OR and I was happy to have her there when he came back. It is quite shocking to see your little boy with a breathing tube. Though it was actually a relief to see him breathe without all that effort. In addition to the breathing tube, he came back with a peripheral IV in each hand and an arterial line in his right wrist, and they inserted an NG tube for nutrition as soon as he was back. All the teams from the OR (Anesthesia, ENT, Respirology) along with the PICU Attending gather in the room for a "handover" which is sort of like a debrief. I learned that Eric had treacheitis, that his airway was 60-70% blocked by some gunk (my word) and they even showed me a video from the bronch (eww) that they had attempted a lavage but the gunk caused bleeding when they tried to remove it, and that they had taken samples in an attempt to identify the gunk. They expected it was an infection of some sort, but also wondered if perhaps there was a small perforation in the trachea causing the pneumomediastinum and subcutaneous emphysema. That was another new phrase I learned that means air bubbles collected under the skin. In Eric's case the pneumomediastinum was also sending air up into Eric's neck which is why he looked so swollen. The doctor told me it felt like rice krispies under his skin! On the plus side, Eric's lungs were functioning fine. They inserted the breathing tube a little deeper than normal to bypass the tracheitis and wanted to give about 72 hours for the trachea to heal. The plan was to go back to the OR on Tuesday, have a look around, and hopefully extubate. Eric's Oncologist came to see us a couple of times on Friday, but then left on vacation for 2 weeks. Terrible timing! 

The next few days are a bit of a blur. Eric woke up shortly after the debrief and went straight for the tube so they had to use restraints on his wrists. They obviously increased the sedation as well, but they were having a really hard time keeping him appropriately sedated and he would sit bolt upright and become quite agitated. They were worried about the safety of the tube, so ended up adding a paralytic to the mix as well. It was very difficult for me to watch the inadequate sedation. Sunday night was particularly rough and I remember thinking one more night, I only have to do this for one more night, and then he will be extubated Tuesday morning. 

During this blur, Infectious Disease (ID) stopped by to let me know they had found fungus in the samples that were gathered in the OR that first day and were going to start him on an anti-fungal but that it would take a little longer to determine what specific fungus it was. A day or so later they came back to let me know that it was Aspergillus Fumigatus, a very common fungus that is all around us. For those of us with healthy immune systems, you probably aren't even aware that it is all around us, but since Eric is immune compromised it was able to take hold. The ID Doctor said that Eric has probably had this for months! He was on a prophylactic anti fungal for a long period of time for this reason, but it was stopped because it interacted with a chemo med that he was on only briefly in the winter or spring. 

Tuesday morning they took him back to the OR. The plan was to have a look around, take tissue samples (they'd only taken sputum samples the first time) and hopefully extubate. While he was sedated for this procedure, they also took him for CT to identify any dissemination of the fungal infection, beyond his trachea. They did find 2 spots on his lung and 1 on his liver, but his head, sinuses, etc looked clear. About 5 minutes before Eric returned from the OR, the nurse let me know that he was on his way back and he was still intubated. I guess I hadn't really considered the possibility that they wouldn't extubate him and I was a mess. This was the start of a very bad day. The Respirologist on service for the week was the same one that treated Eric's pulmonary GVHD and it was nice to have a familiar face. He came right over to me before the debrief/handover and said that Eric just needed a little more time. To which I, of course, replied "how much time?" He said that he could take a look, bedside, on Thursday and potentially extubate then. In the debrief, he also mentioned that it was an "atypical presentation" of the fungal infection. I think by this point they had decided there was no perforation and the extra air in the chest cavity and neck was due to the fungal infection.  After rounds that day, the Oncologist that was on service for the week came by the room. She works as both an Oncologist at BCCH and at Canuck Place Children's Hospice. She was wearing her BCCH hat that day but I can never forget her other hat since having to have a conversation with her in that capacity a couple of years ago. She put on a serious voice and told me that Eric was "very, very sick" and then told me that the lesions they'd found on his lung and liver could be leukemia. I was flabbergasted. This hadn't even crossed my mind as a possibility. Also isn't leukemia a blood cancer? How could there be lesions? She said that sometimes it does present in deposits. WORST DAY EVER. 

Later that same day, the Infectious Disease Doctor came by and told me that it was fungus. It was all fungus. No leukemia. I sobbed and had to tell her they were tears of joy. Apparently this was only the second time in her career that someone wept with joy finding out that their child was riddled with fungus. I am still really mad at that Oncologist; there was no need to tell me what the lesions "could be" when we had definitive answers within 2 hours. Fungal infections are not easy to treat and the anti fungals do not work quickly, like an antibiotic does against bacteria, but fungus seems doable; more cancer seemed insurmountable. They added a second anti fungal to treat it and removed all of his chemo meds in order to stop suppressing his immune system so that it has a chance to fight the infection. Obviously, this made me very uncomfortable, but I discussed with a different Oncologist who I like and trust, and she told me that it's a balance and right now the fungal infection is the more acute, life threatening problem so we need to address it with everything we've got, but we will adjust as the situation changes. Luckily, Eric's blast count was very low at that point, sitting around 0.2 and then dropping to 0. Additionally, now that they knew the deposits along his trachea were, in fact, just an atypical presentation of the fungus infection, they decided that instead of taking a bedside look around on Thursday, they would instead go back into the OR and clean up (debride) all of it.  In the meantime, we continued to limp along with poor sedation, and it seemed like a new sedation plan every 12 hours as the PICU staff changed. 

On Wednesday morning, I cried during rounds and said they needed to do better with the sedation. I didn't love the tube, but really was okay with Eric needing more time to heal, if only they could keep him sedated! Instead, they went the other direction and ended up peeling back all of the sedation and adding some anti anxiety meds. Eric woke up, with his breathing tube. He was curious about it, and touched it, but he didn't try and pull it out. I explained to him where we were and why he had the tube, and I had to do that a few more times as the sedation fully left his system since it also affects memory and, luckily, Eric was not aware of having had the tube for many days. We learned to communicate with him typing on his iPad, which also got better as the sedation left his system. I was able to personalize recordings on a button and made one that said "Mama" so he could get my attention if needed. We did have a speech language pathologist stop by, but she was mostly just going to set us up with the stuff we already had for communication. It was really, really hard and very tiring, but so much better to have him alert and relatively comfortable than what we had before. It is very rare for adults, let alone children, to be intubated and awake. They were so impressed with Eric. One of the Charge Nurses asked if they could take a picture for their staff education sessions. 

Eric kept asking when the tube would come out and I kept saying tomorrow/Thursday/at noon. Unfortunately, on Thursday, he again came back from the OR with the tube. However, this time, it was because they cleaned up all the junk, and they were able to get it all!!! They said his trachea had been 60ish% blocked and the top third of his left bronchus was completely blocked, but now it was all patent (clear.) Since they'd been digging around in there, the area was inflamed, so they wanted to wait 24 hours before extubating. 

Friday morning, one week since the tube went in, and it was finally coming out!!! They had initially said 11am and then noon. Eric was so annoyed. He said (typed) "it's already been a couple days!" I figured I would just roll with that and not bother letting him know that it had been a week unless he asked. The tube finally came out and I was emotional just to hear his voice for the first time in a week! Eric had his request of a cold and bubbly Sprite in the fridge and ready to go when they told him that he couldn't eat or drink for 2 hours. He was not impressed! They did let him have ice chips and an hour later I saw the doctor in the hallway and asked her and she said he could have his Sprite. After that he had some yogurt and jello and soup. We were just supposed to follow his lead and go slow, but he chose all soft foods that first day. I asked for physio to come by that afternoon. After a week of being bedridden I knew we would need them and didn't want to wait for the weekend to ask when there is only a physio or two around for the whole place. Eric did some light standing that day. When he commented on the challenges of standing, the physio said well you haven't done it in a week! She ripped that bandaid right off! Eric was very surprised and a bit teary at having lost a week, but I explained that it was the meds that made him forget and he seemed to just accept that and move on. 

The following day, Saturday, around noon, Eric was moved back up to T8, our "home" floor and boy did it feel good to be back here. Everyone knows us and they were all saying how happy they were to see Eric back and looking so well. On T8 we have a bathroom in our room, unlike in the PICU, so Eric's big goal for the day was to walk to the bathroom. When it was time, I was ready to support him and his IV pole but he basically just told me to get out of his way and motored himself to the bathroom unassisted. I asked if he wanted a chair to sit on to rest while he brushed his teeth, but nope! He walked there, stood and brushed his teeth and walked himself back. What an impressive kid! Other than short walks to the bathroom, our goal for the weekend was to stay out of the PICU and Eric nailed that too. His oxygen saturation was good, and he was able to eat and drink and swallow meds. 

Stay tuned for next steps ;)

Update Aug 14

Great news! Eric has been extubated and no longer has a breathing tube! It was so wonderful to hear his voice again. He is doing well and wanted a Sprite as soon as the tube came out. Upon hearing that he had to wait 2 hours to eat or drink he said that he needed to talk to the doctor. He is happy with his Sprite now and has even had a little yogurt. 

I will post all about how we got here when I have a little time. 

In other news, it's Grandma Wendy's birthday today!!!

Update Aug 11

I can't go into detail right now, but I did want to provide a quick update. Eric was admitted to the Pediatric Intensive Care Unit (PICU) on Thursday night/Friday morning due to difficulty breathing. On Friday morning he was taken to the OR to be intubated with a breathing tube. They have discovered that he is suffering from a massive fungal infection that has caused pneumomediastinum and tracheitis. As of now (Tuesday at 9pm) he remains intubated and sedated. I hope to be able to post a more positive update soon. 

Week of July 26

With Eric a bit under the weather, he started the week pretty chill. He was resting and building Lego. No signs of fever. Joel and I were busy painting his room and assembling his new bed frame. 

On Wednesday morning Eric wasn't feeling too bad when we hit the road for clinic, but by the time we got through traffic and walked up to his room, he was feeling pretty miserable. He got his access, bloodwork and platelet transfusion. Both his Oncologist and Nurse Practitioner listened to his lungs and said they sounded clear, but he was very congested. We were about to do the de-access and take off when Eric said: Mama, I feel hot. The nurse checked his temp and, sure enough, 38.5. She went to go tell his Oncologist and we waited to see what he wanted to do. The team ordered a nasal swab and blood cultures, but said that we could go home with a course of oral antibiotics. Since Eric actually has some Neutrophils, germ fighting white blood cells, they weren't too worried about treating with IV antibiotics. The Oncologist asked us to stop by for a chest x-ray on our way out as well. All of that took awhile, but we eventually made it home. After a bit of a nap in the car and a rest in his bed at home, Eric was back to building Lego by dinnertime. The cultures were negative, but the swab was positive for entero/rhino virus which is the common cold. 

We had planned to go to Playland on Thursday and had to cancel that, but at least Eric didn't have any further fever. He rested most of the day, building Lego on and off, while Joel and I went to Costco. We were planning to go out of town Friday evening so we had our fingers crossed that Eric would be well enough to go and went about getting ourselves prepped to go. 

On Friday we were back to clinic to top up platelets before leaving town. Eric's Oncologist came in first thing to examine Eric and said that he was definitely somewhat improved over Wednesday. He got his platelet transfusion, but his hemoglobin was low so he had a blood transfusion as well. This wasn't a surprise to us as often when he has a virus it eats through his hemoglobin. Eric's Oncologist also requested an ECG while we were there and Eric's heart rhythm is improved to normal sinus rhythm, over the borderline prolonged QT he had before. Eric's White Blood Cell count is quite high, but that is primarily due to the virus. His blast count is still relatively low at 1.6. 

With the cold it was a bit touch and go getting out of town, but we got the okay to go. We went home, packed the car and booked it for the ferry. We are spending a week at our friends' place on the lake and we are so grateful they are willing to put up with us for a week! Thanks D&R!! 

WCK (West Coast Kids Cancer Foundation) posted a pic of Eric at day camp a couple weeks ago on their social media. 

Week of July 19...

...and Eric's birthday!!! On Sunday, Eric turned 11 years old. He was so excited for his birthday, as he is every year. 

We rented a private backyard pool on Swimply for Eric to celebrate with his friends. It was in South Surrey because Eric saw on the thumbnail that it had both a diving board AND a slide! Since it was a bit of a drive, the kids met at our house and we drove them out there. We had a boys car and a girls car. The kids had a blast playing in the pool with all the floaties, plus going on the slide and diving board. They had pizza and cake and before we knew it, it was time to head back home. 

Eric was EXHAUSTED when we arrived home, but he only had a couple hours to rest before getting back in the car to meet Granny, Uncle Dave, Auntie Jenny and Uncle Jay for birthday dinner at Boston Pizza. That was Eric's choice since they have his favourite - bugs and cheese. On the way there, we drove past Royal Columbian at 5:19pm and I said that is where you were born 11 years and 5 minutes ago. We had a nice catch up with the family and Eric was spoiled with (more) LEGO. 

Back at home he opened more LEGO gifts from family who couldn't be there and we packed up for camp. It was a very busy and very fun day! 

Monday we went to clinic for TWO units of platelets. They wanted to load him up before Camp Goodtimes. Unfortunately it doesn't really give him any more longevity but hopefully will help with the bumps, bruises and bleeding that might happen at camp. In clinic lots of people wished Eric a happy birthday and Kristina, the Child Life Specialist, let him pick a LEGO set for his birthday. The Fellow did say Eric's lungs are a bit more wheezy than they were last week, but Eric isn't having difficulty breathing so we are continuing to wean the steroids. They plowed the platelets into him pretty fast. I knew they were supposed to do platelets over an hour, but hadn't realized that it doesn't matter how many bags you put in during that hour. Luckily, it gave us a bit of time at home to finish prepping for camp before we had to head out to Loon Lake for drop off.

At home, I was getting Eric's meds ready when I realized that I was so focused on camp, I had forgotten to pick up his oral chemo at the BC Children's Hospital pharmacy when we were there. I had counted his meds the previous week to see what needed refilling before camp and that was the only one that would run out before the end of the camp. I made sure to get it refilled for Monday so it would be ready for camp. So here I am, so excited about 4 full days of freedom, now thinking that I am going to have to sacrifice one of them to drive from Coquitlam to the hospital pharmacy in Vancouver and then to camp in Maple Ridge before finally heading back home. I reached out to our Nurse Clinician and she was able to pick the meds up from pharmacy for me and give them to the Camp Medical Director, who is another Oncologist on T8. She just pops in and out of camp, but was at the hospital on Monday and heading out to camp to check in that evening so she was able to bring the meds out with her. I was so grateful they were able to do this for me and feeling so, so lucky!  

Both kids were gone until Saturday early afternoon when we had planned for Chuck and I to drive separate cars to camp. He would pick up Joel and drive him home and I would take Eric to the hospital for a scheduled platelet transfusion. However, I did get a call from camp at 10:50 while I was sitting on the couch, drinking my tea and enjoying the last little bit of freedom. They wanted to give me a heads up that Eric wasn't feeling great and his temp was elevated at 37.8 degrees. It's not a true fever until 38 degrees, but it seemed like it was headed in that direction. We were going to the hospital for a platelet transfusion after pick up anyhow so no need to change plans, but I did use my remaining free time to pack an overnight bag. 

At pick up I saw Joel for long enough to give him a hug and learn that he had a great time before going to pick up Eric from the med shed. The nurse at med shed said that his temp had actually dropped from when they called me, so no fever. Eric was clearly very tired and was pretty quiet on the way to the hospital, but he did say "worth it" which is the same thing he said last year when he came home from camp with a cold.

At the hospital he was accessed easily on T8 - thank heaven we had that appointment scheduled and didn't have to go to the ER. They did bloodwork and started the platelets right away. When the bloodwork came back, his WBC count had continued to drop from Monday, which is a good thing and his blast count was still fairly low, but his hemoglobin was 70! Eric generally gets symptomatic at 80 and he had been having headaches at camp, but they told me he'd spent the whole previous day swimming and dancing. Eric confirmed he'd been swimming FOUR TIMES in one day and then danced at the dance party that evening. If I had a hemoglobin under 100, I probably wouldn't get out of bed, let alone if it was 70. So the doctor ordered a red blood cell transfusion for Eric as well. It made for a longer day than we had planned but we were comfortable on the inpatient side, since clinic is closed on the weekends. The doctor said that obviously Eric had a cold - he was hoarse, coughing and stuffy - but his temp was mid 36s at the hospital so she said she didn't see any reason we needed to stay. Though she did warn us that we could be back anytime if the cold causes him to spike a fever. 

I was saying to our nurse about how slow they run blood on the inpatient side versus the clinic and she actually got permission to run it at the same rate as in clinic so we could go home more quickly. However, when she did Eric's last set of vitals at the end of the transfusion, his temp was 37.7 degrees. We decided to wait 20 minutes and check temp again. If he was going to spike a fever we didn't want to de-access his port and leave, only to have to come back into the ER for a re-access. When the nurse came back in 30 minutes it was 37.6, which didn't help us to make a decision, so we waited another 20 minutes. At that time it was 37.3 which was still elevated, but they take the temp by running across the forehead and then behind one ear, so she did the other ear and it was 36.9. That was low enough for me so I said, we're out of here. Eric was really afraid we'd just have to turn around and come back so he wasn't sold on leaving. I told him that of course I would do whatever he chose but that I thought we should discuss it before making a decision. His temp rose mid morning but never hit a fever and 10 hours later, same thing, and he wasn't feeling feverish either time. Additionally, I felt with the fresh blood on board and being able to get a good night of sleep at home, he'd probably feel better. I figured there was a good chance we could get by without a fever and I didn't want to wait in the hospital to find out. He obviously didn't want to stay at the hospital either, so I was able to convince him fairly easily. We made it home a little after 9pm and Eric was happy to be in his bed at home. It's now Sunday late morning and no fever 🤞

Here are a couple of pictures from Camp Goodtimes Instagram during the week. Eric was playing D&D during board games time and Joel playing Black Jack during the Carnival. Apparently he bet it all and won! Mid week when I couldn't see or talk to them, I loved seeing how happy they were! 

 

Week of July 12

On Sunday we went to the Old Farts Car Club Cancer Sucks Car Show. They raise money for families with children who were diagnosed with cancer. It was a wonderful day - amazing people and cool cars! 

Monday Eric went to WCK (West Coast Kids Cancer Foundation) Day Camp in Surrey. I drove him out there and then headed home to get started on Joel's room renovation with Joel. It was only a few hours before I had to head back to Surrey to get Eric. He had a good time, but was exhausted. The theme was Explorers and they had decorated tote bags and made treasure maps, plus lots of other activities and snacks. Eric was especially positive about the snacks. 

Unfortunately Eric didn't sleep well on Monday night, even after being so tired from camp. He decided not to go to camp on Tuesday because he was just too tired. He rested and played games while Joel and I worked on his room some more. 

Wednesday we went to clinic. I mentioned to Eric's Oncologist that he was having trouble sleeping and his Oncologist said that it was probably from the steroids. Eric's blast count was down again, but the white blood cells (WBC) had creeped up a little, still well above normal range. His Oncologist said it is good though because they are all mature cells. Though, he did want us to restart the chemo that was discontinued Sunday that is supposed to lower WBC. This is only out of an abundance of caution to make sure Eric is safe for camp. We've got no problem with that!!! His steroid dose was also cut in half as we continue to wean him off the steroids. He is still coughing a little but not sounding as wheezy. 

Thursday Eric went back to WCK camp. He was tired when he arrived so had a one hour nap in the quiet room. That's something he would never do at home! They had freezies for afternoon snack, so it was the best day. Friday was back to WCK for the final day. In the afternoon they had a showcase where parents were invited to a talent show and a tour around to see all the things the kids had done and made during the week. 

Saturday we were invited to the home of the organizers of the OFCC Cancer Sucks Car Show where they had a BBQ for the volunteers. They also unveiled how much they had fundraised and presented it to us and another family. It was incredible. The organizers, volunteers and participants are genuinely wonderful people with huge hearts. 

Also on Saturday, I had to run a bunch of errands for the big day on Sunday... Eric's 11th birthday!!!

Week of July 5

Eric was discharged!!!! It turns out that Sunday the 5th was the peak. His WBC counts dropped on Monday and, even better, his blast count dropped by half! His Oncologist stopped by and let us know that he and the Clinical Associate (CA) Pediatrician that was looking after Eric in the ward that week had agreed that if his counts were down again on Tuesday we would be allowed to go home. We got lots of movie suggestions and watched some of those while hoping that his WBC count would be down again the next day. 

Tuesday morning when we woke up the first thing I asked Eric's nurse was for his counts. They were down a little, not like the day before, but I hoped that down was down. When the CA walked in the room with paper in her hand, I knew we were good to go! She had brought discharge papers!!! However, we did have to wait for a prescription to be ready at pharmacy. They had hoped not to send us home with the new chemo to drop the white count, but since his counts were only down a little that day, they decided Eric should continue with the chemo and re-evaluate in clinic later in the week. The chemo was ready at the pharmacy early afternoon and we made it home for mid afternoon. I crashed, hard, after a quick unpack, and Eric became one with the couch. He did come and tell me he was bored later in the afternoon and I told him to go away. It was such a relief to be at home after 11 nights in the hospital. That's our longest one in awhile. 

Wednesday morning I had an appointment for car service. Side note: it regularly boggles my mind that while we're dealing with all of cancer crap, we also have to do normal life - make dinner, wash dishes, fold laundry and car service! Luckily I did have the foresight not to book it too early in the morning so I got a sleep in and slow morning before I had to head out. In the afternoon, we decided to get started on summer vacation, finally!!! I took the kids to Rocky Point Park for ice cream and a walk on the pier. We went to Chapters and picked up some books for our summer reading. Finally, we got Eric a haircut and now he's summer ready. Joel didn't want one because apparently he likes his hair like that. Eric kept saying this was such a great start to his summer vacation! 

Thursday morning I had more errands and the kids had screen time. In the afternoon, we continued our efforts to make the most of summer vacation and I took the kids to Mundy Park pool. I had planned to read a book while the kids played in the pool, but Eric said "I want to swim with my family" and I can't deny him something that is so easy to provide. (We are not excluding Chuck. He is just at work and missing out on all the weekday fun.) We had a great time playing, but Eric is definitely short of breath in the pool, unable to swim as easily as he usually would be able to. After the pool, he went to a friend's for a playdate. This is a lot of activity for a kid who just spent 11 nights in the hospital and wasn't at school for the months before that. He made it a little over an hour and a half at his friend's place until he was too tired and ready to come home. 

Friday we had an appointment at clinic. Since Eric was supposed to be at camp this week, which ends Friday morning, our appointment wasn't until 12:30. It was nice to have the morning free, but the clinic was busy so we had a lot of waiting with our afternoon appointment. I was very anxious with his counts not having been checked since Tuesday. Had they continued to drop? Would they be back up? Would they make us stay? I did not pack a bag which is tempting our motto of pack a bag, so you won't need it. While waiting (and waiting) in clinic, Eric went to play on the Xbox in the teen lounge. He doesn't usually do that, but had just realized that he could sign into our Xbox at home from the one in the teen lounge, same as he does with the Xbox in his inpatient room. That kept him entertained and I was able to read my book in our room, so at least that kept us busy while we waited. Finally, we got his counts and his WBC are down again and his blasts are down to 2.4!!!!!!!!!! This was such good news. Also, we get to continue weaning him off the steroid to treat his lungs and on Sunday he takes his final dose of the new chemo. He is still coughing, and was short of breath in the pool, but with the white cells dropping, the hope is that the fluid on his lungs will continue to improve. After waiting so long, Eric's nurse blasted those platelets into him, a bit faster than they're technically supposed to without an active bleed, but we were happy to get them in and get out! 

Saturday Eric was ready for a bit of a rest day and Chuck and I had some errands to run. Of course, we still want to be having summer vacation fun every chance we get so we decided that after Eric's rest day and my errands, we would go see the new Moana live action movie in the theater. 

Sunday we are off to a car show in Langley. Eric goes to the WCK (West Coast Kids Cancer Foundation) day camp in Surrey this week Monday through Friday. Both boys used to go, but Joel has aged out :( Eric will miss day camp on Wednesday to go to clinic for a count check and platelet transfusion. Joel and I are going to spend the week updating his room for the first time since we moved in when he was 2!