Week of June 14

This week has been such a rollercoaster and I do recall at one point during the week exclaiming in frustration that I wanted off the ride. No surprise there, but not sure I'm all that vocal about it usually. 

Clinic on Monday started out amazing! They got new recliners in the outpatient clinic rooms. I spent a lot of time in the chairs here and they were definitely missing a foot rest. Now they not only have a foot rest, but nice wide arms that I can rest my phone and water glass on (and then spill my water glass) and they are so comfy. I was ridiculously pleased with the chairs, so much so, that I took a picture! 

The rest of clinic was a lot more eventful than I would have liked. Actually, not all that eventful, just lots of information to ponder. Eric's platelet transfusion started and I got his basic bloodwork and learned that his hemoglobin was 84. He typically gets symptomatic at 80 and having fallen from about 100 last week to 84 this week and with a busy week ahead, I thought perhaps he should get blood that day. However, Eric was having NONE OF THAT. He just wanted to go home. He didn't care if he'd have to have a long day later in the week, as long as it wasn't today. One of the other numbers that comes in that basic bloodwork is white blood cells and when I heard the number was 12-point-something, I knew we were in trouble. The number last week was 4-point-something so that's a pretty big change in a short period of time and blast cells are one of the numbers that make up that overall white blood cell count. Unfortunately, I had to wait for the differential, the break down of the white blood cell count into it's components, to find out what the blast count was. Our team got the information and then Eric's Oncologist looked at the smear under the microscope with the pathologist as well to confirm what the numbers were indicating. There are some positive numbers, like his neutrophils (germ fighting white blood cells) are up but so are the blasts, substantially. Eric's Oncologist asked if we could come back on Wednesday for bloodwork to see how things change in the next 2 days before deciding on a course of action. Going in on Wednesday will also allow Eric to get a red blood cell transfusion, hopefully before he gets symptomatic. The team also asked us to go for a chest x-ray on our way out of the building. Eric was so upset because he just wanted to go home. It didn't take too long and Eric's Oncologist wants to see if he's got fluid on his lungs. Eric's been coughing a lot and between that and what the bloodwork shows, it could be a sign of differentiation syndrome, which is a dangerous side effect. It was a side effect that was common with one of his previous medications, but it is not so common with this one. 

Tuesday we got to stay home, thank heaven! I puttered around with some errands and chores while Eric entertained himself but he was pretty headache-y all day from the low hemoglobin. In the morning I did hear from Eric's Nurse Clinician that the x-ray was normal, so that was a relief. 

Wednesday we headed in to clinic for bloodwork and a red blood cell transfusion. We waited 1.5 hours for the unit of blood to arrive, even though it had been pre-ordered and Eric's port was already accessed, so bloodwork was done quickly. Transfusion Medicine is definitely on my naughty list. And yes, I do keep a running list in my head of places I am not too happy with in any given week. When the bloodwork was back, I spoke with Eric's team. Unfortunately, his blast count has risen again and is now just under 10. Eric's Oncologist is still happy with what is happening in his white blood cells, with the exception of the blasts. He says we've got to knock those blasts down. This is the point we were at with the previous treatment that we tried, but we weren't allowed to combine anything with it. This time, with the current treatment, we are allowed. This means that we can keep the treatment that is doing good things happening, while at the same time administering an IV chemo to address the blasts. Unfortunately, it also means we're coming back to clinic every day for 5 days, in the midst of all of the end of year and grade 5 graduation things. Eric handled the news like a champ, as he always does and looked on the bright side, saying at least we don't have to be inpatient; however, he was also a lot more grumpy this week, with the added appointments, than is usual for him. 

While we were at clinic, an OT (Occupational Therapist) came to talk to us. I had asked because while Eric is walking without pain now, there were a few weeks where he wasn't able to. Additionally, he doesn't have the endurance to walk long distances and I was thinking about the summer ahead. With the OT we agreed to borrow a pediatric wheelchair from the Red Cross. The OT was great. She said we like to save our energy for fun, so wheel up to the playground and then hop out and play or take the wheelchair along on a walk to hold all your things, but then Eric can pop into it if he needs a rest. It was a longish day because blood takes longer to run than platelets and we ended up driving in and out in rush hour after a long appointment. I haven't complained much abut traffic recently, but it is still awful. Traffic is also on my naughty list.

Thursday was Eric's leaving ceremony since Grade 5 is the last year of elementary school here. This felt like an important moment after everything that Eric has been through since Grade 2. Unfortunately, Eric hasn't been in school to practice for the leaving ceremony, but his teacher did take the time to meet with us to do an overview for him. Additionally, because of the 5 days of IV chemo, we had to drive into the hospital in the morning. As Eric angrily pointed out, all the way there and back for a ONE MINUTE infusion. We made it back home in time to pick up Joel from school and for us all to get dressed and head up to school, though it was a whirlwind of a start to the day. Chuck had gone to work in Abbotsford for a half day and was leaving at noon giving himself lots of time to get home, but the naughty traffic struck again. There was an accident on the highway and he was stuck and couldn't get around it. Luckily, he ran into the gym just as the ceremony was starting. Unfortunately, as soon as the ceremony was over Eric insisted on going home immediately and when I suggested one picture he cried. It was way too hot in the gym and his tummy was upset. We did do one family photo and as you can see from the pic, he was not impressed. 

I was sad because after everything that Eric has been through, this seemed like a big milestone and I thought he would enjoy mingling and taking photos from his friends. However, I have to take my cues from Eric, which I am still learning to do and I find especially tough when I've got expectations of how something will go. In retrospect, he was probably nervous and overwhelmed. He doesn't love a gym full of people looking at him and he hadn't got a chance to practice like the rest of the students. It was also pretty crowded in there and he doesn't do well with crowds. Later in the day we did go for dinner with our friends, who also had a graduate, and Eric really enjoyed that. At dinner he said he hated the whole ceremony and I said, I got a photo of you smiling. 

When you have a younger sibling at the school, they walk you out of the gym. If you don't have a younger sibling at the school, you walk with your little buddy. However, Eric hasn't been at school much and he told me he didn't know who his buddy was and thinks the last time he did buddies they were making Christmas cards. So I asked his teacher if we could have Joel walk him out and, while they don't generally allow that because it would be so challenging to organize, the school graciously consented. When Joel had his Grade 5 graduation, Eric was only 5 months post transplant and was not at school, but was also able to walk Joel out of the gym. 

It has been a hard 3 years, but look how they've grown! I can't believe we are finished with elementary school. Baker Drive Elementary has been the most amazing, supportive community over the past 9 years. 

Anyhow, on to Friday and back to clinic, again. Eric was so much more chipper than any previous day in the week. He even told his Oncologist, who I love and Eric barely tolerates, that he appreciated him. Eric had his bloodwork and a platelet transfusion. His blasts have come down a little bit with the chemo infusions and his white cells are continuing to do things that are making Eric's Oncologist happy. He said "his body is fighting." Clinic was fairly quick and we hit the Red Cross to pick up the wheelchair that was ready for Eric. He is very happy with it, hoping that it will allow him to do a little more this summer. 

Back home we got a quick rest before heading up to the school for the Grade 5 slip n'slide. This is such a fun event that the parents organize for the Grade 5s to celebrate with their friends and classmates. Even though Eric's port was de-accessed specifically for this event, he only went down the slip n'slide once but definitely enjoyed the rest of his time hanging in the sun with his friends eating pizza and ice cream sundaes. The lovely mom who volunteered to create the Grade 5 yearbook even brought Eric's yearbook to the party so that his friends could sign it since he probably won't be at school much, or at all, next week. My heart is so happy when people are thoughtful enough to consider Eric's needs in advance. It's not an easy thing to do when you don't live in our world and have 40+ other Grade 5s to consider, but I appreciate it so, so much. 

Saturday morning we were back to the hospital, UGH. It was planned to be a quick in and out with just the one minute chemo infusion, but Eric did have to be re-accessed after being de-accessed the day before for the slip n'slide party. His port is really bothering him these days and he found it pinched a lot; though, the access did go well and it wasn't bothering him anymore by the time we got home. After the week we've had, it was nice to have the afternoon free (ish) and after grocery shopping, I treated myself to a pedicure! 

Sunday morning (Happy Father's Day!) and I'm sitting in a comfy chair at the hospital. We're on the inpatient side of T8 since clinic isn't open. Eric has already had his last dose of the IV chemo and we are just waiting on platelets. We had actually planned to come in today, regardless of the chemo, for platelets because tomorrow is the Grade 5 trip to the waterslides. This is an annual event for the Grade 5s and Eric has been waiting for it for 6 years. Unfortunately on Monday there was an incident at the Cultus Lake waterslides that caused the trip to be cancelled. Eric was absolutely devastated, but thanks to the quick work of Eric's teacher, they were able to relocate the trip to Bridal Falls waterslides. Eric is relatively happy with the substitution. He is sad not to be going to Cultus, but is very happy that he still gets to go to the waterslides with his friends. I love that his team at the hospital are so willing to be flexible to make these things possible for Eric. It only took 36 minutes to get here today, which is good, but just reminds me of how ridiculous traffic is the rest of the time. Why does it take another 24 minutes on the regular?!? That's without an accident or peak rush hour. UGH! Hopefully the platelets will arrive quickly so we can get back home. It has been a long, long week and I was feeling my margarita shirt this morning. It says: I NEED A HUGe margarita. 

Chuck's family is coming over this afternoon to celebrate the June family birthdays and I've got caesars, not margaritas, ready to go! Happy Father's Day to all the dad's out there and happy birthday to Chuck and Dave! 

We don't have to come back to clinic until Friday!!!!

Week of June 7

Eric and I were at clinic today when I realized that I had forgotten to update my blog over the weekend! That either means there isn't too much going on with Eric or I was too busy this weekend, or maybe both! 

It was a fairly uneventful week, Eric-wise. Monday was a pro-d at his school and his friend had a birthday party. It was the first time he ventured out, aside from clinic, in weeks but he wasn't going to miss it! His legs had been starting to feel better, but definitely not 100%. Even those it was sprinkling a little, they were swimming in a backyard pool and loved it! Eric got a bit cold and tired and had me come pick him up an hour early, but he made it 2.5 hours! 

Tuesday was Chuck's 50th birthday. The boys enjoyed the cake and spoiling Daddy. They think he's REALLY old, which is funny, but only for a few more years! 

Wednesday Eric and I went into clinic. He had his bloodwork and platelet transfusion. His Oncologist came to talk to me and said there are some interesting signs in his bloodwork that something good might be happening in his blood, but they're just soft signs and while he doesn't want to do another bone marrow biopsy yet, he can get some good information by drawing bloodwork for a split chimerism. Eric's Nurse Practitioner was saying this is good news and I said well, its not bad, but I will reserve judgement on whether or not it is good. Additionally, Eric's blast count is still a little elevated, which I don't like. 

We mostly just chilled on Thursday and Friday. Eric didn't make it to school with his legs still achy but he did have a lesson with his online teacher. Joel got to go to Playland on Friday for his school's Grade 8 Field Trip and had a good time. He even went on a couple rides which surprised me because he isn't really into rides. 

Saturday evening we gathered with friends to celebrate Chuck which was really wonderful to catch up with people we don't see as much as we would like to. 

We're back at clinic next week on Monday (aka today) and Friday, as well as, Sunday so that Eric can safely participate in the Grade 5 "leaving" events since it is his last year of elementary school. 

Week of May 31

We were able to come home on Sunday afternoon. All morning Eric was saying when will the doctor be here, when. Then the doctor showed up and Eric said "Finally! When can we go home?" He was still in a fair bit of pain, but had a better night and was just so done with the hospital. A platelet transfusion was already in progress and the doctor let us go when it finished. We were so happy and relieved to be home. We were supposed to have a clinic visit on Tuesday for platelets, but I emailed the team on Monday to ask if we could cancel it since he had platelets on Sunday and they were happy to let us do that. 

It felt like such a long, in a good way, week of freedom, from Sunday afternoon through Thursday. Joel was home for some of it too, having caught the cold that landed Eric in the hospital. Initially, Eric was in a lot of pain. The pain meds were helping, but not enough. He was even waking up in the middle of the night in pain. A Nurse Practitioner from the team that did the pain consult a few weeks ago called me to check in and was able to tweak the plan a little. That helped for Eric to sleep through the night. He spent the week working on his LEGO set on and off as the pain would allow and was so pleased to finish it. 

Eric started to feel a bit better as the week went on. He is definitely still in pain, but not quite as agonizing as before. We went to clinic on Friday and I did get a wheelchair to make it easy and painless for him to get upstairs. He had bloodwork and a platelet transfusion. Unfortunately, the blast count was up a little on Friday, but his Oncologist says we won't make any changes from a one off. He would be more worried if it was a trend so he says we will see what the numbers look like on Wednesday. 

Eric spent the weekend resting his legs. Though on Sunday we went out to Camp Goodtimes. We were invited to their training weekend to share our story and what Camp Goodtimes means to us. It was so wonderful to share with the volunteers how their selflessness positively affects our family. One the way out there, we saw a couple bears and on the way back a deer! 

Week of May 24 + Hospital, again

We got to have a nice visit with the family on Saturday afternoon and Sunday was pretty chill, lots of chores around the house for mom and dad, and lots of video games for the kids. Eric was headache-y Sunday, so we prepared for a longer day at clinic on Monday. We arrived, access,  bloodwork, and, sure enough, hemoglobin was low. First he had the platelet transfusion and then the blood transfusion so it was a long day, though fairly uneventful. Liver inflammation is down again and blast count remains low, but not zero. Eric had yet another ECG and it was fine. On the way out, Eric was complaining of pain in his right thigh but I thought maybe it was just from lying down all day and he'd be able to walk it off. By the time we got home, his pain was worse and he asked for pain meds. 

It was a long hospital day and I figured Eric would need to rest Tuesday, but maybe could go to school on Wednesday. Unfortunately, his pain was worse, he wasn't able to put any weight on his right leg and he continued to need pain meds. He spent all of Tuesday on the couch in the fetal position and even though he couldn't put weight on his leg, I wanted to make sure he at least moved a little. He'd been chatting up a special LEGO set with a friend and she gave it to him as an early birthday gift. It had arrived at our house, but I hadn't told him yet and this seemed like the right time. He was so excited and immediately moved to a sitting position so he could build. He built on and off Wednesday and Thursday and it was nice to see him sitting up, happy and engaged in an activity. Thank you!!!

Aside from the pain, Eric was feeling fine. Thursday late afternoon, I took Joel to track and when I got back I noticed that Eric was flushed. I felt his forehead and he was burning up so I got the thermometer and he had a fever, which means we had to call the Oncologist on call and come into the ER. We were there for the fever, but his leg pain was so bad that I had to get a wheelchair to take him from the parking spot right outside into the ER. We got into a room immediately and actually saw the ER doctor before we even saw our nurse. We do appreciate the VIP treatment to make the ER a little less painful. Our nurse had a quiet confidence and Eric was really concerned about the port access, but she got it easily, thank heaven. They started IV antibiotics and took blood cultures, urine cultures and a nasal swab, which is the fever protocol. They also gave him some fluids and pain meds and ordered an x-ray for his leg. Four hours later we got a room upstairs on T8. It was late and Eric was so tired and cranky. His platelets had been low, so they ordered some platelets for overnight, but that means he had to have 3 blood pressures, which they call arm hugs, even though it is way more painful and much less comforting than a hug. With all that and the bloodwork and vitals overnight, Eric did not get enough sleep. The pharmacist came in at 9:40 to ask me a question and woke us up then. Eric had to stand up to pee which was agonizing and he hadn't had any pain meds, so we asked for pain meds and they brought the wrong form. Then Eric asked for toast with peanut butter and a cup of milk and the nurse came back and said there's no peanut butter, no jam and no milk. WHAT?!?! Between the lack of sleep and the pain, this caused Eric to lose his marbles. He also was saying all morning that he wanted to go home. He is so done with the hospital after 3.5 years and especially after this last season with so many stays, plus he has the LEGO set at home that he wants to finish! I was trying to cheer him up, so I went to the Gift Shop and got him a LEGO puppy to build. Also, since we forgot his favourite stuffy at home, I got him a chocolate lab puppy stuffy that he has named Charlie. I suggested he name the LEGO puppy too, but he told me you don't name LEGO. 

At some point during the day, I did learn that the nasal swab was positive for Enterovirus, the common cold, which explained the fever, but he still didn't really have any symptoms, maybe a bit of a cough, and that fever only lasted about an hour. Eric had an MRI scheduled for the afternoon. Good thing Eric had his new puppy to keep him company inside the ER machine, while I kept him company in the room, but outside the machine. It took forever and I was pretty bored, and sleepy, but Eric got to watch Big Hero 6 while he was in there. 

Eric's regular Oncologist came by to show me the MRI pictures and discuss the findings with me. It was fascinating to see the pictures and it definitely helped with the explanation, but I will do my best. Basically a clump of blast cells in the marrow restricted blood flow to an area causing an infarction (death of bone cells) and then the tissue all around that area is inflamed which is causing the pain. Eric's Oncologist had gone to MRI to review the images and, interestingly, while he was there, they asked about Eric's left leg because they can see the same thing healing on that leg, which explains the pain from 3 weeks ago. There is nothing we can do except manage pain and wait for it to heal. 

Friday overnight was tough. Eric was up numerous times in lots of pain and not getting much sleep. Saturday morning the pain has been much better managed. Saturday evening would be 48 hours fever free and without the cultures growing, we should be able to go home. However, the doctor that came in this morning said that this is some of the worst kind of pain you can have and he was concerned we wouldn't be able to manage the pain effectively at home. We do have the same pain meds they use here, but we can only administer them orally versus the much faster acting IV. We don't have too much going on today, but Eric is having another blood transfusion. He went 3 weeks between his last two, but this time he just received one on Monday. This is likely the enterovirus burning through his hemoglobin. 

Please wish Eric a less painful afternoon, evening and overnight so that he doesn't hurt but also so that we can go home! 

Week of May 17

It has been a fairly uneventful week, which is what we like! Eric was tired Tuesday morning and stayed home from school. We went to clinic on Wednesday and it was pretty straight forward, but Eric got overwhelmed early on and a bit cranky. He had 2 nurses because one was new to the clinic. He's actually a nurse we've seen in the ER a few times, and also on the inpatient side of T8. However, he has never worked in clinic so he had someone shadowing him. So they were in the room for awhile to do the access and bloodwork. As soon as they left, an ECG tech showed up, and as soon as she left Eric's Oncologist and Nurse Clinician showed up. Everyone of these people wanted to poke and prod Eric and he was done! 

Having an ECG is not a regular event for a clinic visit, but everything else is. That was Eric's 4th ECG since he started this new med 2.5 weeks ago, so he's also done with ECG. I told him if they are going to make you do something so often, at least it's easy. For an ECG he can continue to lay on his hospital bed and watch his iPad. They just put some stickers on his chest and connect wires to them and the whole thing is done in about 2 minutes. Eric's Oncologist has ordered so many because this new med can cause long QT which is basically a longer gap between beats. It seems like all these meds can cause this and he has been monitored for it before. As of Friday, the ECG looked great, but Wednesday's did show "borderline" QT so we do need to keep a close eye on it. The dosing of this med is a bit different, so that Eric takes 1 tab for 5 days and then 2 tabs for 5 days and then repeats. This is because his dose is actually 1.5 tabs, but you can't cut them. This last ECG was after 5 days of 2 tabs, so Eric's Oncologist is hoping that after another 5 days of only 1 tab, the ECG will be normal again. 

After all that poking and prodding, everyone left Eric alone. He got his platelet transfusion and his doctor reviewed the bloodwork with me. The liver inflammation is down again, though only a little this time, but the best news is: blasts are down to 0.7!!!! I mean zero would be great, but not 9 is also amazing. It seems like this new med is working 🤞🤞🤞 We don't know for how long, and while we have started steps toward transplant, it seems like we're going to get a little breather. 

On Thursday, Eric went to school for a half day and was recognized at Baker's May Recognition Assembly for his positive attitude 💖 

It is Friday morning and Eric and I are enjoying a nice slow morning. Tomorrow we are going to Granny's to celebrate the May birthdays and Sunday we are free!

Back to clinic Monday and Friday next week. 

Week of May 10

Eric and I have caught a little cold. Luckily it's quite mild, especially for him. I had a nice and relaxing Mother's Day, while Chuck worked his butt off. Eric entertained me - and himself - by eating an apple like a goofball.

Eric had a platelet transfusion on Friday, so usually his clinic day this week would be Wednesday, however, since he started the new medication/treatment on Friday, the team wants to keep a close eye on him, so we had to go in on Monday. Since he didn't need platelets or his port accessed, we had to go to the blood lab first and then to clinic. Eric has been taking daily pain medication proactively because of the pain he was having the last couple of weeks. However, I forgot to give it to him Monday morning, after being away and out of the routine. He mentioned in the car that we'd forgotten but said he was fine. I asked him again when we got to the hospital and he still was fine. Blood lab went smoothly, though slowly, which is normal. In clinic, Eric saw his NP. She mentioned he was looking a lot better. His numbers were all good, including his blast count finally being down significantly. This could still be from the IV treatment finally working in his system, or from the new med or maybe both. We were only at the hospital a total of just under 2 hours and got home before lunch. It was nice to have the afternoon free. When it was time for Eric's afternoon meds, I asked him if he needed the pain med and he said "does it look like I need pain meds?" while dancing around the living room. My heart burst with joy. He said this is the best he's felt in weeks and it's definitely the best I've seen him in weeks, even months. Always the opportunist, I said if he was feeling so well, perhaps he should try a half day of school on Tuesday and he agreed. He was a bit nervous to go to school after being away for so long, but he made it the half day as planned. When I arrived at noon to pick him up, he had clearly had a very good morning and was grinning from ear to ear. 

Wednesday we went back to clinic for a scheduled platelet transfusion and also another check in to see how things are going with the new med. His blast count was down again and his liver inflammation still dropping. A good visit! Thursday Eric said he was too tired to go to school, but he's still feeling great. 

Way back when BC Ferries opened up their reservations, I booked a ferry to the Sunshine Coast and back for May long weekend, so that we had the option to go if we chose. A couple of weeks ago, I don't think we could have done it, but with Eric feeling better, everyone was up for a little vacay. The long weekend makes our clinic visits a bit challenging. We opted to go in on Friday, 3 days this week if you are counting. The idea was that Eric could get topped up with platelets before the long weekend and next week we can go back to our regular schedule, if all the numbers continue to look good. Clinic was pretty straightforward. Most of our team was away but we saw another doctor that we know well. Eric had an ECG to check in on his heart with the new med and it looks great. His blast count was up a tiny bit from Wednesday which I don't like, but I know Eric's Oncologist would say that it is not a statistically significant difference. His liver inflammation is down again. It has come down leaps and bounds this last week and is now close to the slightly angry that we've been tolerating for a year. Most importantly, Eric is still feeling great and is excited for a weekend on the Sunshine Coast. 

Our ferry wasn't until late, and visiting Granny's cabin is easy, so I was able to have a nap before packing. The family was excited to go, but I was exhausted. Between my mini cruise, 3 hospital days in one week and a cold, I was beat! However, I knew once we get to the cabin, it will be super relaxing. The ferry was uneventful and we got into the cabin just before dark. Granny wasn't available to join us this weekend, so it's just the 4 of us and the dog. The weather turned out to be beautiful on the Sunshine Coast over the long weekend, which I wasn't really expecting. We spent a lot of time relaxing, napping, playing family board games, poking around the beach, and we even toasted s'mores over a campfire on the beach. 

Back to reality (home) this (Monday) afternoon and back to clinic Wednesday. 

Week of May 3

As planned, we went to the hospital Saturday morning. Since the clinic is closed on the weekend, we got outpatient treatment on the inpatient ward which means a comfier bed for Eric and comfier recliner for me. Eric had to have his port accessed. He had numbing cream on and said at least the inpatient nurses are good at it (as opposed to the ER) but when it came time to access, he freaked out a bit. His nurse did a great job and the access went very smoothly. She did the bloodwork and platelets arrived quickly. Eric's Oncologist was working this weekend so he came by to review the bloodwork with me. Blasts were about the same and liver was slightly improved again. After the platelets, he had the chemo. This is a more intense chemo, but his doctor has ordered a low dose so it is actually done as an IV push over one minute. The whole time we were there, Eric was excited to go to Balding for Dollars and get a snow cone! It is a fun event with games, prizes, mascots, and food, but Eric's favourite part is the snow cones. We walked over and... no snow cones this year!!! Eric was so sad. He'd been looking forward to that for months. They did have ice cream, but Eric didn't like the flavour choices so he had a cupcake and then we left pretty quickly. It was very hot out and standing/walking has been difficult for him. He is having a fair bit of pain in his side and shoulder blade. It seems to be like the leg/groin pain of a few weeks ago, so his Oncologist thinks it is probably the blasts causing him the pain. Shortly after we got home Uncle Jon and Auntie Becky arrived from Prince George for a visit.  

Sunday morning Chuck took Eric to the hospital. Eric usually won't let anyone but me go with him, even his dad, if he has to be accessed. However, since he was already accessed from the day before, he was happy to go along with his dad. As long as we (Uncle Jon & Auntie Becky) didn't do anything fun without him. They were there a little over an hour. He really only needed the chemo on Sunday, but they were waiting for the bloodwork results. Eric's Oncologist needed to make sure everything looked good because if it didn't, he would be admitted. 

Monday morning Eric let Uncle Jon and Auntie Becky take him to clinic, since he was already accessed. His hemoglobin had dropped a little over the weekend, so he was planning to get a blood transfusion, in addition to the chemo, which made for a long day for them. It was amazing for me to get a day back and I puttered around the garden and the house all day. Unfortunately, Eric's blast count has not dropped, after 2 doses of the chemo and we had expected it to. Eric is still very ache-y and even woke up in the middle of the night from the pain. Grandma arrived via airplane mid-day and was able just to Uber to the hospital and catch a ride home. 

Tuesday morning I am back on duty. Grandma came with Eric and I to the hospital to keep us company while Jon and Becky took Millie out for a walk. Eric did suggest that Uncle Jon walk Millie and Auntie Becky stay so they could play on their iPads together. After getting platelets on Saturday, we were off schedule, so had planned ahead to get the platelet transfusion on Tuesday, along with the chemo. 3 doses of chemo and the blast count is still not dropping. It feels like this round of treatment is not working at all. As a stronger chemo he hasn't had in 3 years, I just assumed that it would work and that it would take Eric's aches and pains away, along with the blasts. It is extra hard to have your kid pumped full of poison when it doesn't even work. My pity party was short lived though because after clinic we went for pedicures with Grandma and Uncle Jon and Auntie Becky. It was Eric's first pedicure and, despite the picture where I surprised him, he loved being pampered. He and Uncle Jon got matching blue toenails. 

On Wednesday Uncle Jon, Auntie Becky, Grandma and MAMA (!!!) got on a cruise. It's just a wee little cruise; 3 days from Vancouver to Seattle to Victoria and back to Vancouver. But first...back to clinic for the last day of this round of IV chemo. It was a bit chaotic because Grandma was with me to head to the cruise and Granny met us at the hospital to take Eric home and look after the family for a few days. It was just bloodwork and chemo so we were done pretty quickly but had to wait for the bloodwork results before we could leave and the team wanted me to speak to another Oncologist who specializes in pain management. We had a good chat and she gave us a plan to help manage Eric's pain. The bloodwork arrived and finally the blasts had come down the littlest bit. 

Thursday I was docked in Seattle where it was quite warm in the sun so I hung around the pool and drank the best margaritas! Meanwhile Granny took Eric to the Lego store and spoiled him rotten. I know because he texted me progress updates. By the next morning, he had finished the 2000+ piece set. 

It seems like it was a good way to celebrate his first day off from the hospital after 6 days in a row there. I am also pleased that he was able to sit up and build that long. It seems like the pain management plan was working. 

Since I was still on the boat, and Eric had chosen to remain accessed, Chuck took Eric to clinic that day. First thing I got a text from Chuck about an antibiotic resistant bug they'd found earlier in the week. Luckily, while Eric was at clinic that day, he didn't use the affected washroom and they were able to clear him. That's the first time that has happened to us and it was terrifying, even though it was short lived. Eric had a platelet transfusion and his Oncologist reviewed the bloodwork with Chuck. Blasts were down a little more but liver slightly angrier. He was asked to reduce the dose of the oral treatment that we had increased a few days before. We also finally got our hands on the additional treatment that had been approved almost 2 weeks before. We'd been waiting to hear from the special pharmacy for awhile and of course I got the call as I was waiting in line for security and customs for the ship. Luckily they deliver directly to the house so Chuck was able to bring it in Friday to review with the Oncologist and Eric started it that night. This is the one that is supposed to treat the mutation that was recently discovered. Eric's Oncologist is very optimistic about it. Despite that, this last few weeks have been very tough and his Oncologist has started talking seriously with us about a second transplant. We may not be able to put it off much longer, but I am still hopeful this treatment will work and allow us to be in a better, more stable place than we have been recently. 

I arrived home on Saturday afternoon, just in time for Mother's Day on Sunday. During our time in Oncology land, I have learned that there’s no one way to experience this day. Some people are celebrating, some are grieving, some are holding hope, and some are just trying to get through. Whichever you are, I wish you love and healing today and everyday.