Our journey through leukemia

Connor had 3rd of 6 leg shots today. He has a bit of bone aches as he's coming off the steroids, but not too much. He's in much better spirits yesterday and today. I think he has a bit of "'roid rage" this phase.  Mentioned it at the clinic today and Connor laughed and said "I never put it together that 'roid meant steroids, I thought it meant hemorrhoids!"

Back in the clinic yesterday.  Connor had two chemos and the leg shots.  (And they found a Tiana bandaid for Connor!)  Last week went pretty well. Sunday night Connor's blood glucose spiked, and he took the long acting Lantis overnight to bring them down. They haven't gone back to normal yet, so he continues to test before every meal and two hours after. But has otherwise managed to stay off insulin with some diet control. He starts steroids again in one week. Leg shots continue Wed and Friday this week.   Kirk got his 2nd shot on Saturday, uneventfully, thank goodness. No side effects for him at all.  A welcome change from the overwhelming side effects Connor gets to deal with daily!  He takes at least three additional medications to counter the side effects of the steroids and leg shots. Otherwise Connor's numbers are all looking good. His ANC is remaining high, hemoglobin and platelets are up, and the WBC is up (directly linked to steroids). He's be...

Today is the first day of leg shots. Friday is always the highest dose, so 3 shots, 3 nurses. Thankfully uneventful! We have a running joke (okay, I have a running joke), with the nurses about the kind of bandaid they give Connor. Being a ped's clinic, most of their patients really care about their bandaids. Their tears can flow if there isn't a princess bandaid, or a dinosaur... Connor, if course, could care less. So I always ask if they have a princess one for him! Usually they just laugh, but Trish keeps trying to find a good one. Once he got Hello Kitty!! Connor rolled his eyes, while I giggled. Today Trish found him an Elsa bandaid, and made a point to him that she's looking at him!! Poor Connor 😂! (Of course they are always under his clothes and no one else ever sees them, so we're not actually humiliating him!!)

Day 4 of the steroids. So far so good. Connor has been avoiding carbs to help keep his glucose down and he's staying low enough to stay off insulin. Tomorrow starts the leg shots. I'm hopeful they will be uneventful as well. Here's where I get to brag: He and his team ( Hack Sugar ), are presenting their app Weasel for  Pitch NJ . (Virtual of course!)  Last year their team won 2nd place and $500 for their encrypted mobile operating system.  Wish them luck!!

Connor started Delayed Intensification yesterday. He had a spinal tap, followed by two additional chemos, and started taking oral steroids again. Our hope is that because he's only on for a week, his blood glucose won't be a concern, but he started testing after dinner last night and it was pretty high. He will test his blood before every meal and two hours after for the rest of the week. Hoping we can keep him off insulin, but not sure. The doctor did warn us that this steroid often causes some severe bone pains. Either as it ends, or when it does. (Perhaps because they don't taper?) In any case they warned Connor not to be surprised. They aren't starting the leg shots until Friday, but hopefully should be fairly quick appointments. They had us sign to accept new protocols for the study, which now say they can inject through the port instead of the simultaneous leg shots, HOWEVER, because he started on the shots he has to continue. The doctors apologized for basically ...

Connor went to the clinic on Tuesday. Blood work numbers were all good, so we're set to start on Monday March 22 for the next round. They now require a COVID test before every procedure, so he had a test again for the spinal tap on Monday.  I went to Rockaway Mall mega site today for my first vaccine shot this morning. It was Pfizer (same as Kirk). I go back April 9th for my second.  It is incredibly organized, they brought in the military to help! There were probably at least 50 people in a 15 min time slot, and including 15-20 min observation time, I was out in 45 min! It's first thing in the morning, after my walk, no makeup, and I couldn't be happier!! We should hear about Connor's vaccine within the week!

Quick clinic visit for blood work today.  Connor's numbers look pretty good. His hemoglobin is a little low, so they want us back next week for another check.  We start the next phase on the 22nd. This is called Delayed Intensification and has two parts. The first is 4 weeks, starting with a spinal tap and two additional IV injections of Doxorubicin and Vincristine. The injections will be repeated for 3 consecutive Mondays.  He'll start Dexamethasone (DEX) that same day for 7 days, then off for 7, and on for 7. This is a steroid, so we'll be back checking Connor's blood glucose to make sure he's not too high again.  Two days later he'll have the aspargase injections. 6 leg injections, wed, Fri, mon, wed, Fri, mon. So lots of clinic visits. I anticipate Mondays and Wednesdays to be crazy long at the clinic, so I'm going to add some days to the  Meal Train if anyone is so inclined to assist. A huge thank you to all who have sent things to the Valerie Center o...

Kirk got his first vaccine shot (Pfizer) today!! Yay!!! His asthma puts him higher on the list. Johnson & Johnson has been approved in the US, and the first shots in NJ were administered yesterday. The clinic has him on the list, and will call when they have supply. Given his reaction to various things lately, I'm happy for him to wait until they administer it at the clinic! My turn soon!

Connor's MTX has dropped back to exactly 0.1 (not below), but his creatinine has dropped slightly to .77 as well. Originally they were organizing home hydration again, but Connor did some negotiating and they've agreed to let him just drink. Minimum 3 liters a day (they prefer more), we are continuing oral Leucovorin for 48 hours, and unless the mouth sores are really bad,  or something else happens, we don't have to check back with the clinic until Tuesday!  Just waiting for our discharge paperwork now!!

Connor's 42 hour MTX is 0.75 (has to be under 1) so he hit the 2nd benchmark too! And a big jump down from yesterday's number. His creatinine is creeping up to .79, but still under 1 as well which is great! They'll take 48 hour labs at 1:45pm today and hopefully we'll have results sooner than 7pm. If the number is under 0.4, he should be able to go home on Thursday afternoon (he still needs 72 hours of hydration!) but they may continue Leucovorin orally to help combat the mouth sores. We'll see what the doctor says after the 48 hour labs. Update: His 48 hour MTX is 1.2. They ran it twice to be sure because it's not supposed to go up! Sigh! However, his creatinine is still under 1, at .88 so they aren't too concerned. They'll do labs again at 72 hours, which is about 1:45pm tomorrow, and now he has to be under 0.1. if he is, then he can still go home tomorrow. Fingers crossed 🤞!

  I've written and talked a fair amount about how great our level of care has been at the Valerie Center .  It's a small part of Goryeb Children's Hospital at Morristown Medical Center.   Since Connor has been admitted so many times this cycle, we've gotten to know some more of the staff.  One of our favourites has been Kristen, one of the Child Care team workers.  She loved that Connor and I will play cards, and she's introduced us to Monopoly Deal, and we've introduced her to Uno Flip! She mentioned that the Valerie Center has some wish lists to provide games and things like this for kids that are hospitalized.  I'm including them here: Valerie Center Wish List  - This goes to stores like Best Buy, American Girl, Buy Buy Baby, and Walmart Amazon Wish List Target Wish List If you choose to purchase something, please include a gift note stating your name, email address and if you are part of an organization.  If you choose, you can include Co...

Connor had a decent night, but woke up feeling sick. He threw up before I got there this morning. They gave him Ativan again, and he promptly fell asleep. For the whole day!! He woke once and said he was going to do some work, I managed to catch his computer before it fell off the bed when he fell asleep again! The took labs at 2pm for 24 hours, just got the number at 8pm. It's 75.8, which is the highest 24 hour number so far, but still under the target of 100. They are starting Leucovorin early, so hopefully that will help. His creatinine is still good at .69, so his kidneys are doing their job. In other news, Kirk got an email from the state that he is eligible for a vaccine, and I managed to get him an appointment for his first shot on Saturday. Being an early riser paid off to catch the appointment when it opened at 6am! 2nd shot is March 27. Johnson & Johnson was approved for the US, and the clinic is working to get doses for their patients.  I'll update numbers tomorr...

Connor has been admitted for his final round of high dose Methotrexate. They are starting with hydration of course, and keeping his hydration level at the increased rate. His creatinine (indication of kidney function) is down to .58, which is excellent, so we are hopeful he'll clear the drugs quickly. The doctors decided to put the dose back up to 100%, but they are going to start the Leucovorin earlier at 36 hours rather than wait for hour 42. We are hoping to keep the mouth sores down or avoid them altogether.  They'll continue Leucovorin until his level is less than 0.1.  Hopefully this doesn't mean more time in the hospital, but perhaps an additional clinic visit and oral Leucovorin at home, but it depends on his levels as we get there.  He's doing well right now and that's the main thing.