Our journey through leukemia

Sorry I missed an update yesterday. Connor was feeling better, eating small meals, no fever. Nothing new to report. This morning he told the Dr.  he felt "Fine"! And the Dr immediately recommended discharge! It's been about two months since Connor felt "fine". Never thought I'd be happy to hear it!! So we're on our way home, he'll take his AP test from home tomorrow, and back in the clinic on Thursday for chemo. He had another CT this morning, we'll get results later this week. It was just a check to see how the cyst is draining. There is a chance the external drain can come out soon depending on the CT. Discharge has slowed to about 20ml a day. The internal drain remains for at least 2-4 weeks. He's staying on oral antibiotics, and IV anti-fungal for the time being. Happy to be headed home, weather is supposed to warm up today, so we can salvage one day from the rainy long weekend!

Connor is feeling better today. Less nauseous, and actually ate some food for lunch. He's only taken a couple anti-nausea pills all day. He had another nose bleed, but otherwise he's doing very well.  The surgeon wants another CT tomorrow or Monday, so just waiting to hear about that. We've been told that he has to continue the anti-fungal for the rest of his chemo treatments. (~18 months). He has to continue with the IV one for the next two months while he's getting Vincristine, as it counteracts with the oral anti-fungal. We did get a negative fungal test, and they can't actually find a fungal infection, but if they stop meds, it could regrow. Super frustrating, as he has to remain accessed as we head into summer.  Not much else going on. The surgeon stopped by early this morning and talked to Connor but we haven't talked to him, and if he told Connor more details, he can't remember them. I'm glad he's feeling better.

Connor is out of surgery and in recovery. It went well, he placed the stint and got off about a litre of fluid. He did say some was a big more solid, goo as opposed to straight liquid, which will obviously drain slower. This may not be the last procedure dealing with this.  The surgeon is on all weekend and will check to see how he's doing tomorrow. We may well do another CT scan on Sunday or Monday. Kirk is waiting for him to get out of recovery and will spend the evening with him. I'll update more tomorrow.

Buckle up, this is a long one ... It's been a long day back and forth with all the doctors. Kirk is in meetings tonight, so he took the morning shift today. First, Connor is in better spirits, but still nauseous. They are going to add Marinol to his anti-nausea meds to give him some relief. (a cannabis based drug). This was relayed to me by Kirk, so I asked if they would share it with us too, but not sure if they'll actually laugh or worry we'd take his meds!🤣🤣 They put him back on clear liquids because of the diarrhea, but he's not hungry anyway.  They are down-grading him back to the regular pediatric unit today. Just waiting for an available bed. His hemoglobin tanked so they are doing a blood transfusion today as they wait for the doctors to figure out the next plan.  I spent the morning communicating with his school, picking up a laptop and delivering it to the hospital as he preps to take his AP test on Tuesday from his hospital bed. (Of course, we'd love hi

So Connor's fever didn't go down until after bed. Gave him tylenol every 6 hours to try and bring it down. Called the Dr, and he advised we come to clinic in the morning. If it changed more, we could go straight to ER, but even admitting wouldn't likely get any tests done overnight. So he should sleep in his own bed one more night. He woke with no fever, but had a nosebleed at 4am, swallowed blood and started throwing up again.  (Poor Kaylea is thrilled to be woken by the sound of retching so often!) Kirk brought him to the clinic this morning and they decided to admit him. His heart rate was accelerated so they put him straight into the PICU because the tests are ordered with more urgency in the PICU. He's quite overwhelmed, so we have someone for him to talk to, so I hope it helps. In the meantime, he's still nauseous, threw up trying to go to the bathroom. Diarrhea is back. And now the bag is draining rapidly again. 100ml overnight and another 50ml since this mor

Connor made it through 1/2 hour of physical therapy today. Some sitting leg exercises, a few arm exercises and a short walk around the living room before feeling nauseous. And he spiked a fever. He slept the rest of the morning hopefully to get some energy for tomorrow.  The nephrologist called with a cancellation for tomorrow, so will see him in the afternoon, and a telehealth appointment with the GI at 5:30. Hoping for some answers!!

Back in clinic today, starting next round of chemo. Connor wasn't feeling well with fasting so decided to forgo the anesthesia for the spinal tap. Unfortunately didn't keep him from getting sick. Everything went fine, but he's still nauseous and can't eat, which makes it worse. He'll leave the clinic again in a wheelchair. Heard from the nephrologist, earliest appointment is July 8 (!!), So the clinic will follow up to try and get an earlier appointment. Hopefully we'll get the internal drain surgery on the calendar after talking with the GI Dr. this week. Also hoping for biopsy results. This round only has treatment every 10 days, but waiting to hear if they want us later this week, or earlier next to check in.

Connor's fever came back pretty much as soon as the Tylenol wore off yesterday. It stayed fairly low grade until bedtime when he spiked to 101.5. Spoke with the oncologist who had consulted with the ER yesterday, and we discussed what was going on. There was nothing concerning to him in the blood work, which is good. The antibiotics should last about 8 hrs to kill off anything, but he suspected it was viral anyway. This may be how Connor gets a cold right now.  We've been very lucky this year, that because we are wearing masks, none of has even had a cold!!  It's concerning to me that CDC is advising dropping the mask mandate indoors, because the unvaccinated are choosing to not wear them too. This layer of protection for Connor is disappearing.  We hope that we aren't asymptomatic carriers! In any case, we were given instructions to treat fever with Tylenol, or even Motrin (his platelets are high enough that it isn't a risk), as needed through the weekend. If we ne

No sooner had I written my last post, and Connor spiked a fever and we spent the day at the ER.  We're home, he's tired, but better.  No idea why, so we'll continue to monitor him as the Tylenol wears off. They gave him a dose of antibiotics so hopefully that'll help. Nothing else really showing in his blood work, except that because his counts are down he's susceptible to infection, so we don't take it lightly.

Clinic day yesterday. A new round was supposed to start, but Connor's ANC was only 550. Needs to be 750 to start the new round so we try again on Monday. This next round is chemo every 10 days for 2 months, but may stretch out if his numbers drop between. This is the last phase before Maintenance. The last phase is the longest, but less drugs over longer period. The home nurse came on Wednesday to start physical therapy. He'll have visits twice a week to build his strength and endurance. Next week we go back to the dermatologist, and will hopefully get both biopsy results. We continue the antifungal everyday. Connor is pretty tired of having his port accessed every day. The cyst is still draining, but slower. Only about 60ml yesterday. Running total up to 2380ml. We also follow up with the GI next week for the next steps. His blood pressure has been consistently high the past few weeks, we attributed it to the pain and nausea but now that those have subsided, the Drs want us to

Clinic today for blood work. Connor has been feeling better, and ad long as he doesn't let his stomach get empty or too full, then he doesn't seem to have nausea. He's drained a total of 2,150ml from the cyst so far. We follow up with the GI Dr next week. His ANC is down, but the Dr still wants us to plan to come in and start the next phase on Thursday, she's confident his numbers will increase.  The nurses helped change the dressing on the drain, and showed me what to do going forward. He's still on the antifungal until we get the 2 biopsy results back. His rash is fading with the cream from the dermatologist, and the itch is going away too, so that's good.  We went for a family walk this evening, and Connor walked 3/4 of a mile on his first go out!! It was a lovely evening, so we stopped for some ice cream before heading home. Nice to feel almost normal again!!

A beautiful day for our fundraiser for Leukemia and Lymphoma Society today. Three friends, Kaylea, and one of her friends joined us in person to climb our 1,311 steps (plus a bonus 9!). Our team raised $2421.25!!! Thank you to all our friends and family who participated, shared, and donated. It takes a village, and mine is the very best!! It spans 3 countries and 2 continents!! Connor is definitely starting to feel better! He still can't let his stomach get empty, but he's actually eating a real meal, and not just rice!!  The rash is itchy, the port is sore, anything using his abs hurts, but he joined us for dinner last night and we had him laughing so hard he was crying (probably in pain🙄), but still good to see him start living again. His fungal test is still coming back positive, so he's on the IV antifungal for awhile still. The drain stays in until he's draining less that 10ml a day for three days. He's dropped considerably

Had a quick visit to the dermatologist today. He biopsied the rash, and prescribed some cream. Hopefully it goes away quickly. Results typically take two weeks. Connor is feeling a bit better. He kept breakfast down, and managed to wear a mask without wanting to puke. So some progress for sure.  He's sore all over, has difficulty sitting up unaided, because he feels like to took out his stomach muscles when they put in the drain. (I had a similar reaction to my gall bladder surgery). His leg is sore, and opposite arm from the biopsies.  He did manage to get some sleep, even though between the drain and the biopsy he can only sleep on his back (usually a side sleeper!) He has now drained out a total of 1,650ml of goo. (That's just shy of 7 cups of dark green and nasty looking goo!) We continue to take the IV antifungal every day, and have been told to expect biopsy results in about two weeks (sigh!). Hoping for a quiet weekend, and back in the clinic Monday morning.

Kirk took Connor in for his procedure (s!) today. I was thankful to receive updates throughout the day. They went first to the Valerie Center to get his port accessed. Infectious Disease Dr was there and decided she wanted to do the biopsy of his leg herself. They were discussing admitting him, but Valerie Center let them use their treatment room and thankfully they did it as outpatient in the afternoon. After being accessed, they headed down to Radiology. They took him in on time, and the placement of the stent went smoothly. Before they left recovery they had drained 950ml. (That's 4 cups of liquid for the Americans) Sadly they said it would be several more days, up to a week, before he really starts to feel better. The site is sore, and it's quite a bit over to his side, and a bit uncomfortable for him.  They did the biopsy in the afternoon, and sent samples off to pathology and infectious disease. It would be helpful if it was the site of his infection and we know where it

In the clinic today, lots going on. Connor seems determined to try and stump the specialists whenever he can. Yesterday he got a rash, we thought it was hives, on his stomach, then several hours later, on his arm. They are raised, red, and a bit itchy. Connor is on a fair amount of benedryl for anti-nausea, so we added another dose and called the Drs. My concern was an allergy to the antifungal. They took a look at it today, called in infectious disease again to consult, but didn't think it was hives.  When they got there, Connor very offhandedly mentioned something on his leg. So they looked at that (turns out to be a lump), and immediately said -that needs to be biopsied! So we have an appointment on Thursday to see a dermatologist for both. We all gave him a bit of a hard time for not mentioning it sooner. It may possibly be the site of his fungal infection (?!) I got a chance to speak with the radiologist regarding the procedure tomorrow. The drain will have to be in for a mont

I had a lovely, relaxing Mother's Day yesterday, and Connor rallied on Saturday to help Kirk make caramel sauce and other treats with caramel on them. Connor has felt much the same all weekend.  We did get a call from the adult GI Dr on Saturday morning at 8am. He wanted to check in because we couldn't get an appointment and to let us know he thought there was a better procedure for Connor to have. What he does is:  go through the esophagus, and put a drain in the cyst to the stomach (where pancreas enzymes should drain anyway). However, Connor's cyst is fairly low, and is below the stomach and is unlikely to effectively drain. So he referred us to Radiology, where a radiology interventionist will put in an external drain that will drain to a bag (similar to a colostomy bag). Not ideal, as it has to stay for about a month to ensure it drains fully, doesn't fill back up, or fill with air and potentially burst. That said, it should provide some immediate relief once it

Went into clinic for blood work today. His counts continue to drop, but not so much that he needs transfusion yet. We can call Monday if he's very lethargic over the weekend. If not, appointment Tuesday for chemo. Chest CT from Tuesday is a little inconclusive. There are Small groundglass nodules that seem to be focal atelectasis. (Lung stuck to itself). But no conclusive evidence of fungal infection. However the BD glucan test continues to show positive so he remains on the antifungal. He's staying accessed through next week and we'll continue IV meds at home each day. A pain, but better than larger infection, especially with his counts so low. It's possible hell stay on antifungal for the reminder of the treatment. The pseudocyst near the pancreas remains the larger problem. He is very nauseous, moving makes him throw up. He wakes through the night with either belly pain or back pain and has lost another kg since Tuesday. He's also losing muscle mass at this point

Happy Star Wars Day! Connor was back in clinic today, but only for one chemo, and the antifungal. Unfortunately when they did the CT last week, the tech neglected to do the chest CT. There were two separate prescriptions and orders, and listed as separate appointments, and they even did the IV contrast (poking him multiple times in different places to find a vein) and then never actually did the chest CT (which is why they did IV contrast). Very frustrating. So we go back tomorrow, and in the meantime they want him to continue the antifungal at home all week. They de-accessed him today so he could shower and hot tub, and we are going to clinic first thing and they'll access his port for the IV contrast. At least he doesn't have to drink it. He does have to fast though, so I hope he isn't too nauseous. They need a pic of the lungs to rule out a fungal infection there.  In the meantime we got the results of his Abdominal CT. He has a pseudocyst in/near the pancreas. It's

Today was a pretty good day. Connor tried to keep snacking throughout the day and it seemed better. He almost made it through the whole day, but he choked on a pill right before bed 🤮! We've got the hang of overnight hydration, and the IV meds. Kirk helps if he has to, but struggles to get the gloves on, and it frustrates him!  I am doing The Climb for the Cure on May 15th. It's virtual, so feel free to join my team Climb for Connor . There is also a donation link on my Facebook page.  Here are a couple pics of this beautiful May day