Our journey through leukemia

The procedure went well, we think. The GI doctor didn't actually find any obvious leaks but placed a stent to try and direct flow to the stomach just in case. There was no access to the lower cyst so an external drain will still need to be placed. Hopefully it won't fill again. It was a long procedure. Kirk and I walked into Morristown for a late lunch while we waited. A hot walk, 95F (~32C) plus humidity. Not as hot as the West Coast right now though!  Kirk stayed to spend the evening with Connor so he had a couple beers. This is him waiting for the procedure to be finished Sound asleep!! Once again I find myself saying, we should know more tomorrow!

So my day started with a text from Connor at 7:30am that someone from surgery had stopped by (a med student apparently), and that the pseudocyst needs to be drained and they would call IR and put him on the schedule today, and then left. Connor was very confused, and a little distressed, because we don't want the drain to go in again if it's just going to keep filling. In any case, we waited for the rest of the team to weigh in, I also requested they speak to surgery about their bedside manner with a minor. The issue seems to be that the pancreas is still hurt. Essentially bruised, and time is the best healer. Unfortunately that doesn't work for us because the side effects are so debilitating to Connor right now. They believe that the pancreas is still leaking and that's why it refilled. So GI has agreed to do another endoscopic procedure to look at the pancreas, hopefully find the leak and try to block it, encouraging it to seal.  But because things are never easy, the...

Sorry I missed an update yesterday. Let me recap. Connor made it through the night Fri to Sat without getting sick, but upon moving to a chair he threw up right away Sat morning. Thankfully a Dr was in the room and could see his distress and violence of it and suggested a repeat CT. It got done late in the day, and didn't get to talk to the Drs until this morning. The &_$#-@# pseudocyst is bigger!! Apparently it's the lower one that the external drain was attached to, and it's almost doubled in size. Infectious Disease dr speculation is that it could be like a honeycomb with several pockets. Regardless the first thing out of her mouth was, the external drain may have to go back in. I just about jumped down her throat. If we have to, but it my opinion it's now a last resort. We have been dealing with this for three months, we are not waiting another month for a slow release with continued nausea, and what happens after that, how do we know it won't happen again? ...

Tonight is Connor's 18th night in the hospital this stay. He can't wait to be home. We are aiming for Monday now. They are going to work on reducing his TPN (IV nutrition) to only a 12 hr infusion. And lining up delivery of those meds, and more micafungin. Connor is scared that he'll be too much of a burden, and we're scared that he'll need more help than we can give him. But we want him home more than we are worried, and just being home has some healing properties! I spoke with the oncologist and the endocrinologist and we feel like we have a good plan. The GI Dr did apparently suggest we add Cyproheptadine to his many medications. It's often used as an appetite stimulant, but they want to try it to see if it helps keep things moving in his digestive tract. We'll see how it works. They forgot to order his Kytril last night, so he woke up puking early this morning, and was sleeping from the Ativan when I got there. When he woke he had some reflexology, tried...

First of all Connor is no longer in pain, mouth is cleared up, weaning off the meds (slowly to avoid withdrawal). But Connor has lost all patience. He's still sweet and kind and trying so hard, but he's back to having two modes.... Sleeping or puking. GI was brought in today to discuss nausea and suggested abdominal breathing and getting up and moving. I don't disagree that more meds are not necessarily the answer, they so far seem to put him to sleep, but if he stands, he pukes. (Not even entirely sure the nausea and vomiting are connected, the vomiting happens very suddenly and very violently.) Hard to walk around if you are puking. He is positive for C diff, another infection, so another antibiotic that once again has nausea as a side effect. Honestly don't know what makes him sick. Meds? Pseudocyst? Chemo? All of the above? Doctors don't know either. I begged the staff to do more, that this isn't any quality of life.... Hopefully they find something.

We're still here.  In the last couple of days, he's stayed completely off oxygen, blood pressure is a bit better, and mouth sores are improving. He's definitely talking better. His fun new party trick (actually not new, but back again) is the nausea when he moves. For the past two days if he stands or moves he pukes. Physical therapy just loves working with him! (Please note the sarcasm font here!)  We are bringing GI back in to assess the fluid collection, we're tapering off his Dilaudid, and going to test for C diff, an infection often caused by being on antibiotics for extended periods. (Ironically treated with more antibiotics!) Any of all of these could affect him. We were hoping to be closer to leaving, but if he can't move without being sick, it's not exactly ideal. His WBC count still fluctuates daily. His ANC is great, over 2k. His platelets have dropped again, so they are doing another transfusion today. He's sleeping a lot. Which at least means he...

Had all of us together as a family today!!!  Nothing much else has changed. Connor is slowly getting better, but needs time  Kaylea, Lisa and I are heading into NYC tomorrow for the Immersive Van Gogh exhibit, and spending the night in the city, do will do lots of walking and some touristy things! I won't see Connor until Tuesday evening, so may not update until Wednesday. If you don't hear from us, he's getting better day by day!!

Connor's count continue to trend up. They've stopped the neupegen that helps him make WBC'S because he seems to be managing it on his own. He had two more nosebleeds last night, so they transfused another unit of platelets early this morning. Connor said he didn't sleep well because of the nosebleeds. He's tired, and still grumpy.  PT came and got him walking again. He went down the hall, sat and rested, and then back. Then he sat in a chair for a while. Hry still won't eat. And won't drink much more than water or an apple juice. He says the pain is better, but he's still pressing the Dilaudid button pretty often, and not talking or eating. So he stays on the TPN and other IV supplements. They are starting treatment again Monday. He's already a week late. But they are going to skip methotrexate, and wait another 10 days for that one. He'll just get the Vincristine. Hopefully he'll eat something tomorrow so the chemo doesn't make him too n...

So sorry for the late update. Lisa arrived safe and sound, and we are having a great time catching up! We got her a special pass to the hospital today (usually parents only) to see Connor and see where we spend so much of our lives right now. Connor wasn't the easiest to visit. He's frustrated. His mouth still hurts even though it's better. His lips are so chapped and swollen they constantly bleed and peel. Obviously that's uncomfortable. He didn't really want to talk to anyone.  He still hasn't eaten, so they continue to give him the TPN. We are trying to entice him, but he's lost interest in eating again. He's lost interest in pretty much everything, he would really like to be left alone. So he's actually acting like a fairly typical teenage boy. While I hate it, it's actually a pretty good sign!! His blood work is finally starting to look good! His WBC's are in the normal range and his ANC is just below normal. It was a huge jump both last...

Connor's numbers are up again! The WBC only slightly, but ANC is up to 780!! Very encouraging. Cardiology came yesterday afternoon and hung a monitor to see if they can figure out the tachycardia. Waiting on results.   I've asked them to consult nephrology about the high blood pressures. Endocrinology adjusted the amount of insulin he receiving (up) both long active and correcting. I've asked why his sugars are so high with the TPN, but they say they've taken out all they can. Endocrinology has, in the past, said that he doesn't have the tendency to become diabetic, but wondering if that has changed. (Hope not). He went down to Radiology again, and a dye study of the external drain prompted them to remove it. (Yay!) Hopefully the rest of the cyst will continue to drain internally and be done. We do need the cyst fully gone as it is still growing an enterococcus bacteria. He remains on an antibiotic and anti-fungal. He went directly from IR to CT and they looked agai...

Connor drank two teas last night, and seemed to keep them down. He did have another couple big d-sats (just a reminder, this is desaturated, meaning the amount of oxygen in his blood is low). It shouldn't go below 88%, and he's dropped as low as 80 a couple times. They put him on high-flow oxygen again, and then when he gets too pissed off they let him go back to the cannula. It drops more when he's sleeping. He keeps taking it off, and he got a nosebleed again today, I think because of the irritation. (It stopped fairly quickly, so yesterday's platelets helped!) I think the doctors got the message that I was pissed off yesterday, because today I was invited to listen in on their rounds. Much more helpful to hear this, rather than 4 different doc coming in over the course of the day with virtually the same info. His numbers are finally starting to come up. His WBC doubled from yesterday morning. Still far below what it should be, but on the way up. His ANC needs to be 5...

Connor didn't sleep great last night. He's still trying to keep drinking, it's still visibly painful. He said he's less nauseous though. He does keep trying to get the mucus out, today he wasn't very successful with that. The constant fluids did seem to impare his breathing today. He d-sated several times and they upped his oxygen from 3L to 10L and put a mask back on. He did manage to go back to a cannula a couple hours later. They gave him lasix to help him get rid of the fluids. It seemed to work, at least short term. He got two units of platelets again. His WBC count is still very low, as well as his ANC. He really needs time to have these come back, nothing will heal until they do. They put in the midline IV again, and then he proceeded to blow out one of the other IV's. I guess he was tired of being a pin cushion.  His sugars are still up, they are giving him insulin every four hours to correct, and adding back the overnight Lantis as well. They did adjust...

June 14th is World Blood Donor Day. This is a reminder to please donate if you are able, and find out about platelet donation too! COVID-19 has contributed to a shortage, and we are having trouble getting Connor platelets in his blood type! He's had three transfusions in two days, and he's still in severe neutropenia. (Low white blood cells, and high risk of infection). When I got there this morning he was hungry and trying to eat. Unfortunately his swollen mouth and throat still make swallowing incredibly difficult. It is increasing his frustration greatly. He managed two bites of some cereal, a sip or two of smoothie, and some water.  It all came up along with what seemed like a metric ton of mucus and blood (about 300ml, but still...). He did sleep fairly quietly after that, and seemed to breathe better at least for an hour or so.  He blew out another IV last night so they are looking to put the midline back in, but they hadn't done it when I left. He has an IV in his le...

Connor slept a bit last night, but was up vomiting overnight and early this morning. I got here about 6am, and he was awake, and trying to talk more. He is constantly choking on the mucus, and that is causing most of the throwing up. He was wanting to engage more, but frustrated we don't understand him right away.  On the positive column, his kidneys are back to normal and his liver is starting to recover. His hemoglobin went up a bit. He asked about food this afternoon, and is trying to eat an Italian ice. It's still hard to swallow, but a positive sign that he wants to try. He spiked a fever again at about 9:30 and his blood pressure went down a bit. They are watching him closely for sepsis again.  His WBC are very low, and not coming up as they should after the transfusions. His platelets went up last night, and are already dropping again this morning. His ANC is still very low. They are going to try GCSF this morning, a medicine to help him generate WBC. His mouth sores ca...

Connor spiked another fever overnight last night. Infectious disease was called back in and they switched to two broad spectrum antibiotics, and we are continuing the micafungin. Connor continues to d-sat when he falls asleep (which is often!) so he's on a cannula still. His sores are still terrible, and he has an incredible amount of mucus. He can't spit it up, there's too much, so he either throws up or now we have him using a suction (like the dentist) to help. He can't talk both because it hurts, and because of the mucus. He's practically choking on it. He is getting TPN now, (IV nutrition), and PT tried to come by. Connor did manage to sit up in a chair, and the first thing he did is reach out for a hug❤️. All of his numbers are terrible. ANC is 40 (to receive chemo treatment it has to be over 500), platelets went from 105 on day of admission, to 19 yesterday and only to 23 after two units transfused. He's getting another two units of platelets today, as we...

Lots going on today. First, Connor is still in pain, mostly his throat now, and the continued nausea and actual throwing up are not helping.  On paper his MTX is 0.02, so no longer toxic. They are stopping the leucovorin and the bi carb fluids. His creatinine is within normal range at 1.2, not back to "his" normal but well on the way. He had an EKG this morning because his heart rate remains high, lots of reasons for it, but keeping an eye on it. The results just came back and he now needs an echocardiogram to look further. He had a CT this morning to check the lower external drain. (Once again they asked him to lay flat and he promptly threw up again). The cyst continues to shrink, but still has goo to drain. It's no longer as liquid though, so they injected a medicine to help break it up and aid in the drainage. We'll continue to monitor this. He has an ultrasound planned this afternoon to rule out clots as he's very immobile. His platelets have dropped again, a...

Connor continues to look better on paper. His creatinine is down to 1.5, and his MTX dropped again to .22. (still toxic, but improving). But because he's been in bed, so drugged and not getting up, he is back in danger of clots, and all the fluid is causing some low lung volume so he's back on a cannula just to give him a break. The mouth sores are still terrible, so he's on the continuous pain meds, which he says is helping a bit. He's still quite nauseous, so keeping those meds up as well. The combo has him sleeping a lot. He's not talking when he's awake much anyway. Feeling frustrated for him that the nausea isn't going away. Waiting to hear from the surgeon to hear his opinion on whether or not the drain is contributing to the nausea. He was a bit late getting zofran while he waited for a procedure, and he managed to throw up all over the floor, and over the poor nurse's shoes! I wasn't allowed in the room or I would have had the bag to him with...

Connor should be getting reward miles as a frequent flyer! The hospital staff, is amazing as always. They've placed him in "the suite" this time. The room is bigger than my bedroom at home, and the bathroom is much nicer!! A beautiful glass door shower rivaling many hotels! (We do have good insurance!) Connor had a decent night. He slept (drugged), and will continue to do that a lot for the next couple of days. The methotrexate is slowly clearing, but leaves behind mouth sores that are incredibly painful and are all down his throat as well. (Obviously aggravated by the vomiting). They are continuing round the clock anti-nausea meds to keep that at bay. And because they are continuing IV fluids with electrolytes, they can dose higher than what we can at home. Add to that the Dilaudid (pain med) he's on and he's catching up on his rest for sure! His kidney function is increasing, the creatinine level has reduced from 4, down to 2.5. (1 or bel...

We are back in the hospital. Connor threw up again last night, and twice this morning between 4-6 am. Went to ED because he's so dehydrated now. It turns out his kidneys are quite angry at him for the abuse he's put them through, and quite frankly they seem to be on strike. He got methotrexate on Thurs, and it was nowhere near "high dose", but 5 days later his level is way too high. He has mouth sores that go down the back of his throat (which is obviously aggravated by all the vomiting). So the nephrologist has consulted and will be monitoring him closely. Whatever we do now, needs to kind to his kidneys. He's back on fluids, leucovorin, all the anti-nausea meds, anti-fungal, antibiotics, and morphine for the pain from the sores. They can't get blood drawn from his port anymore so they've added an additional iV to also administer all the meds as quickly as possible. He's on the regular peds floor, but they've warned the ICU team that he's in b...

It's been a bit of a long weekend. Chemo on Thursday had Connor pretty sick this weekend. Friday he didn't do much, but managed to keep breakfast down. Saturday he went from sleeping to puking and nothing else. Thankfully wasn't puking in his sleep, but that was the only positive. The Dr called in a prescription for ear patch, one dose of steroids, and the Marinol (canniboid). Unfortunately, the Marinol needed a pre-authorization for insurance and had to wait until today. Spent an hour calling Dr, then pharmacy, then Dr again before it was finally approved. He's had a dose and finally feeling a bit better. The external drain is draining again, so they postponed the removal planned for tomorrow. I was told to follow up with the surgeon, but after waiting 20 min on hold them, they had no available appointments this week, but would have his assistant call us back. They didn't. Frustrated today. Hopefully the Marinol works like it did in the hospital and Connor can part...

Clinic day today. Kirk wanted to take him because he didn't like the answer about the anti-fungal, and thought I wasn't being forceful enough. According to Connor he patiently listened to the ID Dr and just accepted what she said. (And I'm not forceful enough.🤣) Still taking it indefinitely. Yesterday Connor had no anti-nausea meds at all! Major progress!!  Chemo is affecting him today, and the clinic day was long as they waited for meds and Drs to stop in. He didn't take snacks (Dad took him!), And he didn't ask his Dad to get him food while he was there. I think he waited too long to eat, and an empty stomach still isn't his friend. So he's not feeling well now, and hasn't eaten dinner. He'll head to bed and hope the benedryl helps him sleep. Medically his blood pressure is quite a bit lower today, which is great! He's still losing weight, but only about 1lb since he left the hospital on Monday. He's definitely eating more, but the dietici...