Our journey through leukemia

I'm fairly eager for this month to be over!! Connor's hemoglobin didn't drop much overnight, so we decided to not get the blood transfusion today. Which thankfully meant a shorter day at the clinic. Last day of the Ara-C. Next week we only have one infusion on Tuesday. Staying on overnight hydration until Tuesday, as well as the antifungal.  CT scan was tonight. Connor didn't manage to keep down the contrast, do the added some by IV, hope it was enough to see something conclusive. Took 3 tries for them to find a vein, the overnight hydration is very needed. 3 more days of the oral chemo, and hopefully next week (month) will be better!

Kirk took Connor to the clinic today, so I totally forgot to post! His white and red blood cells are both super low, ANC plunged the other day, and his hemoglobin dropped again so they'll likely do a blood transfusion tomorrow. He's on overnight hydration again, in order to keep him from being dehydrated. They added potassium into the hydration solution because he's having such a hard time swallowing the pills.  His CT is finally booked for tomorrow, but we could only get him at a hospital another 20 min away from the clinic. So it's going to be a long day! They want us there at 8:30 when they open, for hydration, blood and chemo, then we'll leave when they close at 4:30, and go straight to the next hospital for a 5pm appointment. He was feeling better today, actually had some lunch (like a 1/4 of a sandwich), but then stood up too fast and lost it again. He had to drink contrast tonight for the scan tomorrow, so just praying he keeps it down. Unfortunately because ...

Connor slept away the afternoon yesterday, but still thankfully overnight. His potassium has dropped again so he's back on those, and he's going home on hydration tonight because they're concerned about getting dehydrated. He's back on imodium as well. Two more days of this chemo, 4 more days of the oral chemo and hopefully he'll have a better chance to fight back. Next week and the following week he's only in the clinic Tuesday. He should have more time to heal 

Quiet weekend, thankfully. The antifungal IV meds went fairly smoothly. Connor remains nauseous, but being off insulin he can finally eat more but smaller meals so that's helping. We're putting him back on the ear patch to see if that helps too. He got a massage this morning to help his lower back. Clinic days all this week, and still waiting for news on a new CT scan. Sunshine today and tomorrow 🌞 which helps!!

Connor is still nauseous, but managing to keep down the little he's eating with meds. At the clinic again today, and they want to continue the antifungal through the weekend. A visiting nurse is coming tomorrow to teach us how to administer meds through IV. He'll leave his port accessed through the weekend. They are lining up new CT scans to see what else is going on. His hemoglobin dropped yesterday so he's getting two units of blood today. He's slept the entire appointment at the clinic today. (Ativan and Benedryl!) Hopefully this will give him m some more energy too. He's just not himself at all 😔

Clinic visits everyday this week, and Tuesday to Friday next week. Connor is still feeling nauseous, and barely eating. His pancreas has finally started working and he's off insulin, which is much easier for eating several small meals as opposed to only 3.  Still waiting for final results of the fungal infection tests, so Connor still taking an antifungal by IV at the clinic. Hopefully we'll know more tomorrow. Connor is sleeping better, both at night, and most of the day. His body is trying to heal, and fighting hard.

Connor was so happy to be in his own bed last night. The overnight hydration was generally without incident. Some beeping, but not enough to keep anyone, including Connor, awake. He's keeping his blood sugar under control, but not off the insulin yet. He's not eating much, the chemo is making him pretty nauseous this round. Likely because he doesn't have much else in him. Even the smoothie failed him this morning. Hoping to entice him with some food today, he gets his port de-accessed so he can go home and have the longest shower he wants, and grabbing an additional prescription for anti-nausea that he alternate with the zofran as needed. Such is the life of someone fighting cancer.

Sitting and waiting to be discharged!!! Going home and getting fluids hooked right back up again, but at least he can sleep in his own bed. We don't have to be at clinic until 10:30 tomorrow, so hopefully he can sleep 💤!! It's been a long 15 days. Connor is down another 5kg, (~11lbs) from yesterday. But he is finally starting to feel better, and feel human. He is going home on a multitude of meds, with more being administered the rest of the week in the clinic by IV.  One of the test results came back positive, so they have some concerns about stopping the antifungal too soon, but it's not a med he can take orally because it counteracts with one of the chemos. They are re-running the test, but it takes a few days for results. There is s possibility of readmission if it's positive again. It will mean new tests and scans to find the ongoing problem. We are keeping our fingers crossed that he was positive a couple days ago, and now negative. Signing off to get home in tim...

Connor had another good night, not much has changed. He's still gassy and uncomfortable, but otherwise feeling so much better. The oncologist came in today, and has concerns that it has been three weeks since his last chemo. So we are going to start the new round tomorrow. It will start with a spinal tap so he'll be fasting after midnight tonight. This treatment needs a 24 hydration, but Connor was very against another night afterwards, so he'll be discharged tomorrow with home hydration and back in the clinic on Wednesday. It's a compromise, but one we can live with. He will no longer have aspargase in any form. We did find out today that he was so bloated in the ICU that he gained 8 kg (~17lbs), and promptly lost 11kg (~24lbs) in about 36 hours once he got up and started walking two days ago. Talk about water weight!!

Everything is starting to fall into place. Gas continues to be an issue, and his appetite isn't great but he's up and walking around, doing simple exercises to get stronger, and generally on his way to going home. He needs to continue to use the incentive spirometer, but they are starting discharge discussions. They need to decide what meds he's going to continue orally at home (antibiotics, antifungal, and blood thinner?), What physical therapy he'll need, and can they do home therapy because they really don't want him doing anything in a regular facility because he's so immunocompromised.  As they line these things up, he should be discharged in the next couple of days.

Connor got some sleep again last night, but I believe he took benedryl to help. They had his oxygen down so low, that on a whim they turned it off altogether. I was only there this morning, but he was off for a solid two hours with no loss of saturation. He only has one tube, so he's still attached to an IV pole, but he walked the hallway, went to the bathroom and was sitting up when I left. The physical therapist was with him and they were going to practice stairs. I'm sure he's sleeping now. He's only gotten about 1/2 way on the incentive spirometer (if you've ever had surgery, you have to breathe into this and move the tubes up to make sure your lungs are fully inflating). He has come a long way in just a couple days of feeling better and amazingly for one day out of the ICU. He still has gas and uncomfortable bloating, but the more he gets up the better that will be. He still has no appetite, but once the gas moves it'll get better as well.  I think the Dr s...

My goodness, I totally forgot to post!! Connor was set to be moved out of the ICU "first thing". We finally got to his new room at 1pm. Things tend to move very slowly. It was worse than the airport with "hurry up and wait!". However, he's moved and resting comfortably. He is back to not sleeping great, so he seems a bit more tired during the day, but getting up and walking is definitely taking more energy. The peds floor is definitely louder, but Connor now has only one iv, his oxygen and a pulse ox monitor. Instead of an additional three ivs, and blood pressure taken every 15 min.  He continues to have treatments with the  respiratory therapist, PT and OT. Infectious disease is still checking in, as well as endocrinology, and the GI, and if course the oncologist. Nothing much else changed today. He's bloated, not hungry, and tired. But he did start telling Dad jokes again yesterday, so he's starting to feel human again.  No chance of being out of the h...

So Connor did spike a fever again last night, but they do thInk it's just the traumatized pancreas and that the lungs are still slightly stuck together at the bottom. The breathing treatments are going well and they've decreased them from every 6 to every 4 hours.  They moved him off the high flow to the regular cannula, and his room is amazingly quiet. Didn't realize how loud it really was! He's still plagued with gas. He's hardly eating anything because there is just no room.  They are hoping that him getting moving will help with that. PT came this morning, and with two people from PT, and me, the 4 of us managed to walk Connor halfway down the hall and back. We walked through the Drs doing rounds and they cheered our parade! He was attached to the oxygen and his saturation stayed at 100 and resps stayed even, amazing job!! He is highly motivated to get home. With that in mind, his status has been updated so they take less frequent vitals, and while he's goin...

Sorry this is so late. I think they do rounds in priority of urgent patients, and Connor seems to be getting later and later! I couldn't be happier! He had another good night sleep, almost uninterrupted! He's eating a bit, he's off all IV fluids, and seems to be managing fine. He's still very gassy, and taking some chewables to help, but he feels very full before he's anywhere close to finishing a meal because of the gas. He's visibly distended at the end of his meal. Apparently it's fairly normal after pancreatitis, and just something he has to continue to work through. Getting up helps, but he's still attached to so many wires. They turned down the flow of his oxygen, and he's tolerating it just fine. They are going to continue to turn down the flow today, until he's able to move to a regular cannula. If they can wean him successfully today, they will move him off the PICU floor tomorrow!!!🧡🧡🧡🧡 He has respiratory therapy every 4 hours, PT a...

Connor got some sleep last night!! He sounded much better when I came in this morning, and had some fruit smoothie for breakfast. He spiked a fever again last night, they anticipate this happening several times in the next couple of days. He needs to work hard on respiratory therapy, expanding his lungs, using the incentive spirometer, and sitting in a chair or standing. As he expands his lungs, it will help get him stronger. They anticipate him staying on insulin as well, as his body is still traumatized and not working on it's own properly. They continue to run new and somewhat scary (for us) tests, but it is just to monitor everything. There is still infection, they are adding back in another antibiotic, they continue to treat with an antifungal as well. They also continue to take blood cultures, as well as testing his urine output.  He is still very sick, and will unlikely leave the ICU this week. Still more steps forward than back, but it's going to be another long week.

Connor still isn't sleeping more than an hour or so at a time. Despite this he's making great progress. He's doing well on the breathing, they are going to slowly step down the high flow oxygen today to see how he tolerates it. The fluid in his lungs is definitely pneumonia, so they are continuing the new antibiotics, and added back the antifungal as well.  He finally had a CT this morning and it doesn't show an abscess, which is good. The pancreas is still inflamed, and has some fluid pockets, but we will just monitor this for now, usually this just gets reabsorbed eventually.  GI weighed in about the gas and bloating so we have a plan to help that as well. He finally got rid of the excess fluid, so they are now going to increase his fluid intake if he continues the high output. (It's a balancing act).  They allowed him back on food today, so he's currently eating and very happy about it. He's only allowed water to drink right now, he's just happy it...

Yesterday afternoon Connor developed a rash, and his upper thigh became numb. They consulted the attending, resident, oncologist, infectious disease, and neurologist. They believe they are two separate things, that coincidentally happened at the same time. The rash is believed to be an allergic reaction to the antibiotic, or antifungal. They stopped both and switched to different ones. He did spike a fever briefly again yesterday evening, so for overnight they put him back on the BiPap to try and make the breathing easier and let him relax and sleep. He got a couple of hours. The new meds seem to be okay, his numbers on paper still look good, and he was net negative 2 litres again yesterday. So his overall fluid hoarding is down to about 4 litres. Hopefully this trend continues. He has no pain, but is still a little uncomfortable because of the bloating. They had put him back on the high flow machine before I came in today, and he transitioned much quicker today off the BiPap, so they ...

Thank you to everyone reaching out. The beginning of the day is quite busy, I've been trying to get this update out for about an hour. The doctors come in and out, and lots of specialists are weighing in as they make their plan for the day. I'm trying to concentrate on the questions I want answered.  Connor still had very disruptive sleep, I think when he gets home, he'll sleep for two straight days! When I got here this morning he was asking for water or ice chips, even with all the excess fluids not taking anything by mouth is hard for him. They took off his BiPap (vent) in order to do oral care and give him some ice chips. He D-sat'd in under a minute. (Oxygen levels desaturated quickly). We had to keep putting mask on so he could breathe. The actual flow of the machine isn't very strong though, so they decided to move him back down to the hi flow machine (cannula, or nose piece, instead of mask). He says he has to concentrate on breathing now, but his blood pres...

We worked pretty hard yesterday to keep Connor awake, he probably only slept about two hours on and off throughout the day. Last night they increased the high flow air and gave him a sedative to relax him as he adjusted. He still didn't sleep much. Probably another couple of hours, but broken. His Lipase is down to normal range and he didn't press his pain med button much, so for now we've turned it off.  His creatinine remains normal, but they've decided to put off the CT still because his lungs and breathing are more important. His lungs still aren't expanding and he's taking lots of really shallow breaths still, and it's taking all his energy. The respiratory therapist came in and changed the machine to one with a full face mask that pushes more and stronger air into his lungs. They are continuing the sedative, and will increase it as needed. He's still getting the diuretic as he still is taking in more than he's putting out. The PICU Dr. finally ...

So Connor didn't sleep much again last night. His night nurse said he really didn't fall asleep until about 5am. He's like an infant who's switched day and night!! His lab work is looking much better on paper. His creatinine is in a normal range so if it continues tonight and tomorrow they'll try and do the CT tomorrow.  His Lipase (pancreas) is 962, so way down from yesterday's 4,000+. His blood glucose is still over 100, which is normal, but under 200. So we are still correcting with insulin. They are still giving him a ton of fluids, and he's still essentially hoarding them. They are continuing to give him the meds to help him excrete it better. He still feels gassy and bloated.  Unfortunately the meds used to excrete the fluid can work the kidneys and may increase his creatinine, but better in the long run. It's a balancing game for sure! PT came in today and his goal was to sit in a chair upright for an hour. So we went from bed, to commode, to chai...

So Connor said he didn't get much sleep, so I suspect he'll nap on and off today. He has no interest in anything (phone, computer, book etc). So I know he's still in pain. Although he's talking more than yesterday so that's an improvement. They've moved him to self controlled pain meds, so he can press the button himself when he's getting too uncomfortable. (Lots of smaller doses, rather than one large one every 4 hours). Hope it helps.  His creatinine is still high, so the kidneys are still not too happy. They continue to hold off on the CT of the pancreas because the contrast needed is hard on the kidneys too. I did ask why we need the CT, we are all confident it's likely pancreatitis, but there is a chance it could be gallstones, and with a CT they can better determine the type of pancreatitis, as well as rule out the stones. They did another chest x-ray to make sure fluids aren't gathering where they shouldn't. The infectious disease doc cont...

Connor spiked a fever this morning and is being moved to the PICU. More questions than answers right now. There is a team of 7 Drs and nurses surrounding his bed, and taking care of him. They called for oxygen, and he piped up that he was breathing fine. (He's not, it hurts to take a deep breath). They've put off the CT until they get everything else settled. His blood pressure is too low now, and they are doing another COVID test. It still hurts to breathe, and he has the hiccoughs, it's incredibly painful.  They hustled me out if the room and moved me to his room in the PICU, but they haven't moved him yet. It's too quiet now.  I'll try and update throughout the day as we get answers.  Update: He's mostly stable, in the PICU. Blood pressure has come up, he's on high flow oxygen that's warmed and moist (now his nose keeps running). They have three bags of fluids, an additional IV in addition to his port, and constant monitoring. His blood glucose is...

Connor got a bit of pain relief after the 6pm oxy yesterday. Enough to join us for dinner and play a round of Uno Flip afterwards. We kept up the oxy every 6 hours, but he woke at 5 in extreme pain. He waited until 6 and woke me to take more meds. He was covered in sweat from the pain. We dosed him again, and tried to get him some food and headed into the clinic. We didn't start the steroids until we talked to the doctor. We did test his blood and it was over 200, without eating. They gave him a couple doses of Delotid, and he was still very uncomfortable. They did blood work, but decided to admit him even before they got the results back. His Lipase (indication of pancreas function) was high on Sunday. (Normal is 73-343, Sunday it was 642.) Now it is over 6,000.  He's now in a room, and they are doing their best to get his pain down. His blood pressure is also alarmingly high, but they aren't sure if that's the pain. So they are calling in all the experts tomorrow.  En...

Started the morning off with Connor in the ER. He woke about 5 am with upper GI pain. He took some tylenol, but it didn't help. We called the doc on call, but they don't recommend taking anything stronger without first doing blood work. So Kirk took him up, and his Lipase levels are very high. (Beginnings of pancreatitis again). So they green lighted him for more meds, but sent him home without giving him anything. So it was noon before he took an oxy.  He tried to eat, we managed to play egg wars (Kaylea was the reigning champ, but I won the paralympics!), and he half-heartedly walked around looking for candy the easter bunny hid.  And then went to bed.  It helps a bit lying down, but sadly the oxy is barely taking the edge off the pain. He's counting down until he can take something more.  We're back in the clinic tomorrow, so we'll see what they say about his pain then. I just hope he can get some sleep. Hope everyone has a happy Easter, we are zooming with both ...

Clinic day again. 4th of 6 leg shots. It was nice and quiet as the nurses were trying to get home early on Good Friday. We were just thankful they were open and we didn't have to do a hospital short-term admit. It always takes longer! At home we are gearing up for Easter. Dyeing eggs tonight in preparation of egg wars. I couldn't find candied fruit for hot cross buns so I made some, hopefully it turns out okay!  Otherwise a quiet weekend yet again, but at this stage we are happy with that.