Our journey through leukemia

Connor got another shot today (actually 3) administered by three nurses at the same time! So far he doesn't seem to be having any additional side effects, hopefully that continues. His hemoglobin has dropped again, so he's likely to be tired again this weekend. They'll give him two more units of blood on Monday (in addition to the spinal tap and chemo shots!) Another full day there. When they said these next 10 months were a lot, they weren't down playing it! We had a lovely dinner last night and played a home escape room game. We made the kids escape before they could have dessert! Connor played the cancer card at dinner for the first time! I can't remember what we'd even asked him to do, but out of nowhere he deadpanned, "But I have Cancer!!!" It's a good thing we can still laugh 😂 All if us were howling 🤣

Happy American Thanksgiving!! We are having a lovely quiet morning today! Yesterday was another 8 hr day at the clinic.  After his allergic reaction to PEG, Connor had two choices for an alternative. Both are a series of 6 intramuscular shots (actually 12, they give two, one in each leg at the same time).  The first one used to be the only option, and lately there has been a shortage. It is available now, but they've had issues lately, and Connor needs this chemo again in subsequent phases. The 2nd option (that we chose) was to enter a drug trial for a new alternative. It's had some good results, and is going to continue to be available.  We got to the clinic early so that they could do blood work and vitals for his acceptance into the trial.  He finally got the shot at 2, and then he had to be observed for 2.5 hours, and then one final round of blood work. The usual alternative is apparently very painful, so the nurses administering it were giving him a pep talk and...

I guess I spoke too soon.  Connor has done so well lately and I made a comment on how blessed we are.... apparently a mistake! Connor had an allergic reaction to the PEG chemo today. He had it once before in the hospital and was fine, but this time not so much.   He's FINE! The staff knew of the possibility and they were very clear on us to watch him for reaction.  Connor started scratching his head, and then suddenly said,  "I feel weird."  I called Anne and they immediately stopped the drip, and jumped into action.  He was surrounded by staff, his vitals were always stable, no issues with breathing, blood pressure and oxygen levels stayed fine.  No hives, despite the itching.  His face began swelling though, his top lip was twice the regular size, his ears red and double in in size and eyelids swollen.  He was nauseous, and shaking and hot to the touch. I do not have a picture because that just isn't fair! They pushed IV Benedryl ...

Uneventful rest of the week. Connor's Hemoglobin went back to 9.8 yesterday, so we are happier with that number. Just got chemo and out yesterday and today. Kirk took Connor to the clinic today to give us a break from each other. He's getting testy with my nagging, and I'm getting testy with his attitude. He is, above all else, still a teenager. He's still tired, sleeping 12-13 hours overnight, so obviously his body is working hard. Thankfully no other side effects right now. Back on Monday again for another spinal tap.

Connor is getting two units of additional blood today, which should hopefully bring his levels back up. He went to bed last night at 7:45, and slept through until 8:30 this morning, so he's definitely tired! Hopefully we'll have shorter clinic days Wed and Thurs this week!

Another long day at the clinic today. Got here at 8:30, but waited until noon for his spinal tap (lots of younger kids today, so understandably Connor was last in line).  His Hemoglobin tanked after treatment last week, so we are starting blood transfusions today. One unit today, and at least one tomorrow. They may draw his blood more this week to keep an eye on his levels.  This is an expected outcome of treatment, Connor has been lucky to have fairly normal blood of counts until now.  Most leukemia patients start with much lower counts. Hopefully they rest of the appointments this week will be quicker like last week! It's much like waiting at the airport with with "hurry up and wait" several times, but sadly no beach vacation waiting at the end 😞!

The last two chemo days this week were great! Quick infusion and done. We were in and out in under an hour!  Tues we waited two hours for the chemo to be brought from the pharmacy, so a bit frustrating. Thankfully Connor is hardly experiencing any side effects. They encourage him to keep taking zofran (anti nausea) round the clock but he really doesn't seem to need it. He's taking just one at night just in case the other meds he's taking at night affect him.  For those from Canada that are asking about donations. The Valerie Center where Connor is being treated has been amazing. The staff are kind and knowledgeable, and seem to be handling COVID well too. I put a post on the blog about them early on, but here is the link again :  The Valerie Center You can click on the donate link at the top of the page. If donating from Canada you need to scroll down to change the country before you can add your address.  But it should allow donations from outside the USA. 

Yesterday was a long day😭! Left the clinic about 4:30pm, knowing the supplies and home care nurse would be there about 7 to get Connor back on the IV. He continued to drink a minimum of 8oz every hour. Supplies finally arrived at 8:50pm, the nurse (who was amazing and told us to call or text at anytime because she was on call all night!), arrived right after, but by the time he was hooked up and we learned how to flush the line in the morning it was 9:30.  Back at the clinic this morning for another chemo treatment, but should be quicker! To all who have volunteered and donated to our meal train, thank you 🧡. I can't tell you what a relief it is to not have to worry about dinner on those long days. And it really helps take the pressure off Kirk and Kaylea while they are in school!  

  Got to the Valerie Center at 8:30am this morning.  We did get insurance approval for home care, so Connor will come home tonight (Yay!) with an IV to keep his hydration levels up.  We will be here 4 days a week (mon-thurs) for the next two weeks.  I'm still waiting for the official calendar for the following two weeks, and the subsequent four weeks after that.  There is a potential gap between the two 4 week sections if the blood counts are too low during the treatment.   This is one of the most intensive phases - even though the cancer is in remission, without the treatment it would immediately start growing again.  This 28 month regime has been tested and continues to be tested and has the best long term results.  So 27 months to go.  I can hardly believe it's only been a month! Connor's numbers continue to look good.  The doctors are pleased with how high his blood cell counts continue to be.  We may have a blood sugar con...

I have so many people to be thankful for! So many friends who have gone above and beyond despite their own challenges right now! Tracey and Lindsay are two of these friends 🧡.  They started a small meal train during the last phase to help out on our Friday clinic days. This phase, the two hardest and busiest days will be Monday and Tuesday.  And because I have so many friends and family in Canada asking to help they've started a more formal one.  McDermid Family Meal Train USA Friends: For anyone local you can sign up for a meal, or arrange for gift cards through door dash and such. CANADA Friends: Do NOT use the gift card feature. This will purchase Canadian gift cards that can't be used here. You can use the "Donate" feature to send money for a meal instead.  Thank to everyone who is, has, and will be helping!! It really takes a village and I have one of the very best villages 🧡

 Heard from Dr. Gregory already - the numbers are fantastic!!  Connor's numbers are considered in remission AND he has a negative MRD (minimal residual disease).  The remission is expected at this stage, but not everyone has the negative MRD, so this is very good news to start the day!! We start the next phase of treatment on Monday still, starting with another spinal tap at 8:30am.  In the meantime we are enjoying a week free of meds and insulin!!

An uneventful day. Saw the endocrinologist, Connor has to test for a couple days, but is off all insulin. He has to test again when he takes PEG, a chemo he took last phase and again this phase, but only twice so nothing to worry about for three weeks or so. Hopefully we'll have bone marrow results tomorrow!

Connor took his last Prednisone dose on Friday night. Yesterday we had instructions to stop the fact acting insulin with every meal, and reduce the long acting one by 50%. Connor has never been more happy than to just have a bowl of cereal and milk, with it's 150 grams of carbs!!  He had some Halloween candy during the day and while his blood sugar went up, not once was it considered "high". Kirk tested him at midnight and he was low, really low at 67... And of course he couldn't find juice. Kirk gave him milk and tested him again and it was back to normal. We see the endocrinologist tomorrow, but I think we stop the insulin all together tonight! Consolidation phase is next. It starts Monday Nov.9th. So except for the Monday appt at the Endocrinologist, we have nothing else this week. Consolidation is two 4 week sections, and there may be a gap of a week or two between them, but that depends on his numbers.  We will be at the Valerie Center Mon through Thursday for th...