Full Biopsy Results

Yesterday we got the biopsy results we'd been waiting for, the DNA test that shows how much of Eric's marrow is made up of his cells and how much is made up of donor cells. It is fantastic news - his marrow is FULL DONOR cells and none of the broken Eric cells! Essentially this means he is back to where he was last September, as if the last 6 months of relapse hell didn't even happen (but we all have the mental & emotional scars - and Eric, physical scars - to prove it did.) 

What does this mean for the future? Well, I have a lot of questions for the doctor, but it certainly means his donor cells are strong and there is no need for another transplant. For now, Eric is starting another round of treatment today. However, he's only going to do the 28 day oral chemo, and not the 7 day IV chemo. We also don't even have to go to clinic this week. You can't imagine how it feels to get just a one week reprieve! 

In classic Eric style, he responded to the news with "yes! yes! yes! I'm hungry..."

We've been enjoying the sunny and warm weather in the Lower Mainland. Eric has been spending quite a bit of time playing outside and got a much needed haircut on the weekend (pic below.) He asked for this particular style and wants it to swoop to the right, but I'm having trouble getting it to hold. Any product recommendations? Also on the weekend, Eric and his dad went to see Godzilla x Kong: The New Empire. He'd been asking to see the movie for awhile and I kept saying to ask Daddy. So they finally went and Eric came home saying it was the best 2 hours of his life, after Disney World. Chuck was slightly less enthusiastic. 

I have now reached my fundraising goal for my big chop with Balding For Dollars. Thank you to everyone who supported me! And if you still wanted to donate, no worries, I am sure they will always take more money! 😉 My lovely mother suggested my current hair style looks like the second photo below 🤦Fundraising page here: Jacqueline's Big Cut & Hair Donation

Partial Biopsy Results

If you are following along, you know that Eric had a biopsy last Friday. Yesterday at his weekly check in, we received partial results and they are good! They cannot see any blast cells or any of the abnormal cells that are the marker for his MDS. Yay! Additionally, the report noted that his bone marrow is generally "happy." There was actually a big long medical phrase, but that was the doctor's translation. We are still waiting on the chimerism results, which is the DNA comparison between Eric and the donor to determine how much of his marrow is made up of donor cells. The doctor is hoping to have the results by Monday. Also on Monday, Eric will likely start another round of treatment, pending the chimerism results. However, the doctor is suggesting that for this round, we just do the 28 day oral chemo, and not the 7 day IV chemo, which will hopefully keep us out of hospital! As the doctor mentioned again yesterday, there really is no road map for this treatment, so he's making his best educated suggestions on the research that is available. 

We also saw a dermatologist yesterday and got a sunscreen reminder, so I'm passing that along - the sun is out, wear your sunscreen to protect your skin! Eric is particularly sensitive to the sun because of some of the medication he takes, so today he grabbed sunscreen and a hat before going to school. 

I am still fundraising for Balding for Dollars; the big chop is in only 23 days! Here is a link to my fundraising page: Jacqueline's Big Cut & Hair Donation Thank you to everyone who has donated already! 

    

Home!

Eric was discharged yesterday morning - yay! His fever didn't come back after about noon on Wednesday when it first broke. The doctor we saw on the inpatient ward said that some people do get fevers with the common cold, which apparently was the only symptom that Eric had. Between that and the adrenal insufficiency it made for a pretty high fever, but luckily it only lasted 4 or 5 hours and then he was fine. Usually the procedure is to stay for monitoring 48 hours post fever, but the doctor wanted to keep us an extra day so she could wean Eric's stress steroid dose slowly to make sure he didn't rebound. However, when all the cultures were negative after 48 hours she discontinued the IV antibiotic so Eric was able to be disconnected from his IV and move around the room more freely. Unfortunately, we were still on contact precautions (isolation) so unable to use the shared spaces - microwave, coffee, tea, laundry, etc. Eric spent the entire hospital stay building Lego. The first set was a Dreamzzz set from his uncle that was over 1300 pieces. The second was a Star Wars set from Child Life at the hospital and was just over 1000 pieces. The Lego building made the time pass quickly. He doesn't generally love the hospital food, but this time he flat out refused to eat anything from there! Luckily we ate well thanks to some wonderful friends - thank you! 

Eric was feeling well enough on Friday that they were able to go ahead with the bone marrow biopsy as planned. He had to fast for the biopsy and he was hilarious. He kept saying that his body was shutting down. I tried to high five him for something and he said his nerve endings were dead and he couldn't feel it. He started speaking gibberish and seeing things, like my pet penguin. It was all very goofy and entertaining. He wasn't cranky at all from his fast and he woke up really well from the anesthesia. The biopsy itself went well. Apparently the reason he was so sore after his last biopsy was because they had trouble getting the marrow, but they said it was easy this time. Now we just wait for the results which will inform next steps. There's no tried and tested procedure here and the doctor says maybe we can do this, maybe that, maybe, maybe, maybe...Frustrating, but Eric is in such a good place right now; we are so thankful for this option that has allowed him to feel so well. 

We got home from the hospital at about 11am yesterday and I crashed on the couch all day, while Eric played outside for 5+ hours. 

I am fundraising for Balding for Dollars, please visit my page here:

Jacqueline's Big Cut & Hair Donation

Balding for Dollars

Here it is: the official launch of my Balding for Dollars fundraising page! Exactly one month today, I will be going for the big chop to support Balding for Dollars who supports families dealing with pediatric cancer and blood disorders. Please follow the link to donate!

PS - feel free to send me pics of recommended haircuts post chop!

Jacqueline's Big Cut & Hair Donation

Murphy's Law

Yesterday, Wednesday, morning I woke up to Eric on the couch saying he was so cold that he couldn't move and couldn't eat strawberries from the fridge because they were too cold. When I took his temp it was 40.4! I called our Nurse Clinician who said they could see him in clinic today so we didn't have to go through Emergency first. Conveniently, it was also Eric's doctor's clinic day so we got the continuity of our own team. Eric's fever was so high that I didn't bother to pack a bag because I just wanted to get here. Unfortunately, Eric vomited before we left; between that, getting dressed (me) and late rush hour traffic, we didn't get here until just after 9:30. 

Eric was feeling so, so miserable when we got here. Once his nurse finished with vitals, accessing his port, bloodwork, nasal swab (ouch!) and got his meds started, he fell asleep. This was surprising to me as he won't sleep during the day for anything! Even when he's given Gravol and Benadryl at the hospital, he fights the sleep! His nurse came in to check his temp again and it was over 41 degrees; that is 106 Fahrenheit! So we had to wake him up to give him some Tylenol and he just went right back to sleep. The doctor stopped by to let me know that Eric would be admitted. This is where Murphy's Law comes in. Eric's class had a field trip scheduled for today (Thursday) and I volunteered to drive 4 kids! Thank goodness another parent was able to cover for me. 

He slept until about 12:15 and when he woke up, his fever had broken. He was getting steadily better through yesterday afternoon. We got into our room in the outpatient ward around 4pm and the amazing Child Life Specialist left Eric his favourite game to play at the hospital - Llama Matching - so of course we had to play that immediately, and then we played War. Since I didn't pack a bag, Chuck packed up some clothes and comfort items (Thank you for my travel kettle/thermos Laura!) for us yesterday afternoon and brought those in. One of the things he brought was a gift that Uncle Jon had chosen from our Amazon Wish List after Eric's last hospital stay. I kept it secret from Eric to await our next hospital stay and he was so excited yesterday to see a Lego set that he has been wishing for! He built 4 of the 14 bags before bed last night and was telling his nurse all about it! 

He woke up at 3:15am when his nurse came in for vitals and bloodwork and he was chatting up a storm all about his Lego! He woke up again at 5:45 and 6:15 to ask me if it was time to wake up yet. He woke up again at 6:45 and decided it was close enough to 7 that he could wake up and get started on his Lego. 

From all the cultures and swabs, he did get one positive, for the common cold! Even in Eric, that should not cause a fever of 41 degrees. We haven't seen the doctor yet today, but I think this relates back to the adrenal insufficiency again. The cold stressed out his body (even though he didn't have any symptoms?!?!) and his body wasn't able to produce cortisol to respond so he needed a stress dose of steroid, which I could give him at home if I knew it was happening! Since he didn't get the steroid he needed, his body responded with fever and nausea. 

He hasn't had a fever since noon yesterday, he's full of energy this morning and his blood counts are pretty good. His neutrophils (germ fighting white cells) were low yesterday, but today have more than doubled. Usually a fever would buy us a minimum 48 hour stay, and of course we are on contact precautions (not allowed to leave our room and use communal areas) because of the positive swab. 

Eric said "this is a pretty good dinner"  - Bugs & Cheese from Boston Pizza, Lego and TV! Pic below. 

Day 28 of 28

Today is the last day of this round of treatment! Woohoo! And Eric is feeling great! Tuesday was back to school after Spring Break and Eric wanted to walk to school for the first time in months. He made it through the whole day and also his new after school art class where he made a Pentapus (an Octopus with 5 tentacles instead of 8.) He also walked to school and made it through the whole day Wednesday and Thursday. He didn't go to school today (Friday) because he had his weekly check up with his team at Children's Hospital. His bloodwork today was great. In fact, his hemoglobin is higher than mine! His neutrophils (germ fighting white blood cells) have dropped a little but that is to be expected after 28 days of chemo. Next Friday he will have a bone marrow biopsy which will inform next steps. 

We had a lovely Easter weekend to end Spring Break. Granny and Uncle Dave came for Good Friday dinner (we cooked our ham early.) Grandma was here for the week, so actually she cooked for Easter, and all week! Eric was very excited for the Easter Bunny to come and on Saturday night he asked Grandma "Are you in contact with the Easter Bunny?" Sunday morning the kids hunted Easter eggs and then Eric and I went to the Canucks matinee game. It was Eric's first game and he really enjoyed it. He loved the snacks and dancing to try and get on the JumboTron, but his favourite part was definitely the skytrain. 

Tonight we're going to a Sibling Appreciation Event organized by the Parent/Patient Advocate at the hospital and funded by Balding for Dollars. It's at a local gymnastics space so the kids get to play and have pizza and we'll recognize Joel for being strong and carrying on through all this, as well as for being an amazing big brother.