Our journey through leukemia

Day 29.... We are checked in at the Valerie Center awaiting Connor's procedure. It's suddenly like a ghost town here! The nurses are actually all wearing headband ears for Halloween, it is a pediatric unit after all! Rainy here in Morristown, but it was snowing in Randolph when we left this morning.  Nothing can dampen my spirits today. I know that the bone marrow today will show a MRD of less than 0.01, I just have to wait until Tuesday to verify!  Connor takes his last dose of Prednisone tonight and can reduce the insulin tomorrow to only once a day... So many positives!!! If everyone can send good thoughts and prayers I know we will get the outcome we want!!

Thankfully this week was uneventful! Connor was feeling good, his blood sugar numbers are hovering at a normal 100, and he seems to bounce back from the weekly chemo pretty well. He's usually tired on the weekend, but starts feeling a bit better as the week goes on. I expect this week to be more of the same.  Spoke to the staff today and his last dose of Prednisone will be Friday evening next week. He'll have a spinal tap and bone marrow draw first thing in the morning. (Which means we are there at 8:30, he'll have not eaten, and they'll take him in about 10! ) Definitely taking lunch with us next week.  We have a week off after that. We have to wait for his results come in from the bone marrow test and spinal tap before they set the schedule for the next phase. Hopefully have those on Tuesday.  We are looking for MRD (minimal residual disease) of less than 0.01, meaning he's in remission and the chemo is working.  I'm sure we'll meet with Dr. Gregory that w...

Enjoyed a wonderful Thanksgiving dinner last night. I spent the morning walking 12 miles around the Randolph trails with friends (to be fair we stopped for breakfast at 6 miles!)  Connor spent a good part of the afternoon calculating carbs and serving sizes, and managed his insulin perfectly.  We dry brined the turkey this year, on the advice of my talented sister-in-law, which was very good. Very moist, with crispy skin. For anyone interested,  Dry Brined Turkey Here we are dressed in what I call "zoom ready'" dress code. Looks great for a picture at the table, but we're also wearing pajama bottoms!!  After dinner we had a family game and then a hot tub. Altogether a lovely evening! No appointments, or cancer stuff happening until Friday when we go back for chemo. Two more rounds for the induction phase. This round doesn't seem to affecting Connor too much. He hasn't felt sick, and other than being tired, very few symptoms at all, thank goodness. ...

Back at the clinic at The Valerie Center for another round of chemo. Connor's blood levels look good (sugars too, but they are looking at red and white blood counts, platelets, and ANC) ANC is still good, and so are platelets, so no additional treatments or transfusions needed right now. (Yay!) Right now, no additional need to come to the clinic again until his next chemo treatment next Friday, so that's good too! We head to the Endocrinologist later this afternoon and hopefully his blood sugar is looking more controlled. Another good appointment! Connor's blood sugar has regulated enough that he can stop testing after he eats, and can adjust some of the carb calculations. Next appointment is after he's off the Prednisone, and we already have details to adjust the insulin as soon as he stops taking it. And no more 4 am testing!! I'm so happy about that one! Now home -smelling an amazing chili in the Crock-Pot, and enjoying a drink! (Thank you Tracey!) Why is sitting...

  No news is good news today!  Connor's blood sugar has leveled to a normal range, we are counting carbs like champs, and it's another day of him feeling good.  Hope to have many more! Nothing new until Friday now and we'll be at the clinic all day!  I'll update when I have news. A continuous thanks to everyone for your help and support.  Your comments, prayers and everything are so appreciated! 🧡

So far, today is just a regular day! Yay!!! Connor did some school work, Kirk and Kaylea both did school work, and I worked on the piles of laundry from last week. Connor's blood sugar is a bit lower today, but it always seems higher in the afternoon so we'll see how it progresses. Connor is not feeling so tired even though we wake him every 4 hours at night. He's up to 900 steps a day instead of 100 last week while tethered to an IV pole! Otherwise, nothing to report.  Nothing makes me happier!!

Had a wonderful evening last night just having our family back under one roof.  I do have to say, whatever it is, we probably don't pay nurses enough! I almost (but didn't) forgot his meds. I now have calendars, charts, and spreadsheets to manage every thing! These are Connor's meds and supplies for this month! His sugars were in a more normal range at midnight and 4am, and that's good. Hopefully we've got the amount of slow acting insulin at the right dose now. Connor is quickly learning that he's actually sick. He tried to follow a normal routine this morning, including wanting to cook his own eggs.  After standing for about 20 min and walking downstairs once he almost passed out. Light-headed, nauseous, he said he felt hot, but clammy and sweaty. Lying down helped.  He finally managed to sit up and eat. I've suggested he let us help him more, but until that happened he really wanted to just be "normal". I'm hovering between helpi...

We have shifted our dinner to next weekend, but the turkey waits in the freezer, the cranberries are bought.... If you are celebrating this weekend, give thanks for all of the excellent care Connor is receiving, the excellent benefits that Kirk's job provides, and all the support we have to get us through each day! Connor's numbers are still high, they've adjusted the amount of slow acting insulin and we are now factoring in blood sugar levels to the calculations. A dietician is stopping by again today to go over calculations with us. Connor has been giving himself the injections, so I did the one this morning, and Kirk is coming up to do one this afternoon.  Sadly they want us checking his sugar at midnight and 4 am, so they can track how the slow acting insulin is working. Good thing I'm used to getting up early!! With all that, they want to monitor him through dinner tonight and then will hopefully let him sleep in his own bed tonight!!!  Connor is so hopeful! This m...

So blood sugars haven't come down sufficiently so they are starting him on a fast acting insulin as well as the 24 hour one. Learning to count carb numbers to dose properly.  Of course this means another night of watching him, and no going home.  Otherwise, Connor feels fine. I'm pissing him off (as only a Mum can!) And we are beginning to snap at each other and rolling our eyes (channelling our inner Kaylea!) Yet another prescription has been called in, we are on a first name basis with our pharmacist (Dar at Live Well Pharmacy is amazing!), And the pills and daily regime are starting to get bigger. I did forget the good news - heard last night that his chromosome 4 and 10 numbers were up, which is an excellent sign that the chemo is doing what it is supposed to. This is just another bump in the road. 

Morning- I suspect I'll update this later today so starting with a morning label. Connor in good spirits and typically annoyed with parental bothering, as well as interruptions by the dietician and care nurses (do you have enough to do?) He's been spirited off to have another spinal tap and injection, and then he's back to his room for his chemo drugs. Blood sugar came down a bit, but still on the high side. The endocrinologist is sending educators to teach us how to check his blood at home and how to count sugars for his diet. Kirk's family has a history of diabetes so this won't be too tough to incorporate. The doctor is doing his best to get him checked out today so Connor can have Thanksgiving this weekend. However, if it doesn't work out, Thanksgiving will be held next weekend instead. We are flexible!! 12:30pm- Despite Dr. Gregory's support, the endocrinologist wants to monitor him another day. They are starting a long lasting insulin injection that we...

Connor still feeling good today! We got him unattached from the pumps today and went for a walk outside! Nice to feel the sunshine on our faces!  However, this morning his blood sugar was high, and a subsequent prick early afternoon didn't have it come down. We are waiting for endocrinology to come by and weigh in. If they decide he needs insulin, it may delay check out tomorrow, as they'll want to monitor him as well as teach us how to manage.  The high blood sugar is likely from the steroids, and not too surprising, however, not something to be ignored! Thank you for all the comments, I do read them all, even if I haven't answered them all. We appreciate all the support from our friends and family!!

Better day today! Headaches seem to be gone, oncologist speculated it was actually from the spinal tap. He has another one Friday, so they are going to try using a different needle and hopefully it'll be better. Kirk spent the morning with him and I brought dinner to eat with him. The food is fine, but it's not like food from home! We try and bring him something every day. Currently visiting and watching Oceans Eleven.

Not too much new. A one time dose of chemo today, so this is Connor attending class this afternoon (camera off obviously!) At least he's trying! Still working on the headaches, but not quite so bad today. 

Sorry for the delay today. It's Kaylea's actual birthday and just lots going on. Met with doctor and nurse practitioner today. They are giving more meds tomorrow and want to continue to watch his WBC (white blood cells) so they'd like to keep him in until Friday.  Friday he'll have another spinal tap and another round of chemo and then if everything looks okay he'll be discharged that afternoon. Headaches are still coming with the steroids, so we are working on that while he's in the hospital as we are limited to the pain meds we can give him at home. It's also raising his blood pressure, which doesn't help. The other side effect is hot flushes... (I told him he was joining me in menopause!).... So thankful he's not sick, but working on being more comfortable. The nurse practitioner went over the calendar for the month with daily doses of meds, and other prescriptions we need to keep track of. So far I have a list of 7, with more to come!  

When I arrived at the hospital this morning, Connor was sleeping peacefully. He woke feeling much better, and acting like himself.  He couldn't wait to get out of bed, and out of the hospital gown! I'm so happy to see him in good spirits! Today is a day of fluids and monitoring, and some maintenance meds that he'll continue at home (Prednisone, acid reflux meds etc). If he continues to feel good, and vitals look good he'll be home sooner rather than later. (Hopefully Tuesday!) After that he'll continue chemo treatments on Friday as an out patient for the next 3 weeks. Thank you all for your continued prayers, good thoughts, comments and love. Helps us to not feel alone in all of this! Dinner and a movie! Not too traditional, but making the best of it

While Kaylea and I took a break in the city, Connor started chemo today. It was a cocktail of three drugs he'll receive intravenously once a week for 4 weeks. (Induction phase).  So far the only side effect is a headache. He's taking Tylenol for the ache where the port went in so it did help the headache a bit, but he's tired and slept on and off this afternoon. Kirk spent the day with him, but I think we're both going to sleep at home tonight. A good night's sleep will refresh us for tomorrow, and Connor was fine during the night on his own with the nurses. Connor's only weakness is advocating for himself. He spent yesterday and last night downplaying the pain to not be a pain.We finally talked to the Dr together in the morning so that they just brought the Tylenol on a schedule, rather than Connor having to ask for it. He's so worried about bothering the nurses, that he's declining to tell them how he really feels.  We're working on it! I'm hea...

Kaylea and I took a break from cancer today to spend the day at MOMA (Museum of Modern Art) in NYC. It's our first visit into the city since February! Art through Kaylea's eyes is amazing! This one is cubism . It depicts a soccer player. When I couldn't see it Kaylea said "look at the movement and not the shapes". we found a goat!! these are all made of bells - it was really hard not trying to spin them to make them ring!!! The artist put them on wheels and they had handles meant for spinning! But no, we didn't touch and get ourselves thrown out! way more amazing in person! The print doesn't do it justice! we had a great time!!!

  Connor is scheduled for surgery at noon, so we head to the hospital at 10am this morning.  They are putting in the central line port for administering the chemo.  While he is under they are doing another spinal tip as well as giving him a dose of something through the spine.  We have a list of about 8 meds that he's going to be on, they all have long scary names with even scarier side effects - but hopefully they do what they are supposed to.  This first phase is called Induction. It's 4 weeks, starting with a week-long hospital stay to monitor reactions. At the end of this phase we hope to have bone marrow test for flow symmetry less than 1% and MRD (minimal residual disease) at less than 0.01% (also referred to as remission). The 2nd 8 week phase is Consolidation.   Connor is good spirits, joking and laughing and sharing memes with me. He's told his friends now, I think it's starting to sink in. He's been in with us for every meeting with the docto...

  Lots going on this morning.  Connor was scheduled for a PET scan and a CT of the abdomen so he's been on a restricted diet and already starting to drink contrast.  They've scheduled ANOTHER COVID test so that he can have surgery again tomorrow to put the central line port in. Dr. Gregory called this morning and with the results of the bone marrow they are changing the diagnosis to ALL or Acute Lymphoblastic Leukemia.  Remember it's a spectrum between the two.  Here's the information I have been given.  (I read what they give me, and not google right now, it's safer for my mental health!) ALL is a cancer involving the blood-forming cells that normally make a type of white blood cell called lymphocyte. ALL starts when a single young blood-forming cell, called a lymphoblast, develops a series of mistakes or mutations that transforms the it into a leukemia cell.  The leukemia cell multiplies uncontrollably, crowding out healthy cells in th...