It’s now Day +12 after transplant.
Meliss had a pretty difficult weekend, well we both did.
When she spiked a fever last Monday they automatically stuck her on some antibiotics as a preventative until the blood cultures came back (usually takes three days in the lab), which all came back negative. She ended up having a pretty bad reaction to the antibiotics. Starting around Thursday Day +8 she developed a pretty bad rash over most of her body and her face begin swelling. Her fever spiked up to 103 and stayed high for the next few days. The fever was bad, she was constantly frozen and had uncontrollable shaking (new meds for this). Tylenol had little effect and if the fever did break it would return an hour later and the freezing and shaking started all over again. They eventually pulled her off Tylenol because it was wasn’t doing much and they had concerns with blood counts so low it would affect liver function. They gave her a cooling blanket which seemed to help reduce the fever until they eventually put her back on Tylenol the next morning.
Friday morning Day +9, when I got back to the hospital the nurse was helping Meliss to the bathroom, she was having trouble standing up and was delusional and mumbling at this point. I cracked. I had to leave the room and take a walk, I didn’t want her to see me upset. It’s been extremely difficult to see her like this. After about ten laps around the 7th floor I calmed down enough to go back to the room. She was already a little better when I got back, when I first walked into the room her blood pressure had been low and the nurse had just injected her with some medication, so the combination of the two made her light headed and delusional when she tried getting up. After sitting for a few minutes she was talking normal again and eventually went back to sleep. All the previous testing from Monday came back negative, even though they strongly suspected the antibiotic was causing a reaction they ran another CT scan on her head neck and chest to look for an infection. This time Meliss refused the contrast injection, they use this to see the scanned image better. She still had the CT scan but the image wasn’t as clear as if she had the injection, she just couldn’t handle another needle in her arm, her arm was already bruised pretty bad from the previous round of testing. After the scan we had visits from her Transplant Dr’s the Infectious Disease Dr’s and Allergy Dr’s, they were all on the same page about the antibiotic but had no test to confirm for sure. At this point she’s on her third antibiotic and they think it will take a few days for the reaction to clear up and possibly get worse before better. The fever, rash remained and the swelling expanded and made its way down her neck. There were some concerns of the swelling causing problems eating or breathing but that never happened. She slept most of the day waking up during cold shakes, and for vitals and meds. The night was pretty tough, I crashed on the couch again in the hospital so I could watch her through the night.
Saturday Day +10 was the same, fever, cold shaking, rash, swelling and lots of sleeping. Mixed in is constant trips to the bathroom since chemo, and it’s not just jumping out of bed to run to the toilet, it’s an entire process. She’s attached to 7 different IV bags at the moment, all hanging in an IV tree that constantly beeps and the wheel base is wide and clunky. Then from the tree there are three or four IV lines constantly connected to her Hickman ports. So the first task is carefully uncovering all the lines from under the multiple blankets, make sure she’s not stepping on any lines getting out of bed, then you have to deal with the stupid power cord thats always in the way, maneuver everything around the bed not running over lines and power cords along the way and then cram all that into the bathroom. And to make everything more fun, the floor in the room is slopped just enough that if you don’t park the tree in the right spot it rolls towards the door and pulls on her ports. ehhh… A week ago while watching Shark Tank we joked about improving these damn IV tree’s with retractable cords, smaller footprint and less beeping.
Later on Saturday they ordered an ultrasound to check for blood clots. A rash from an antibiotic reaction is normal, but the swelling in her face is usually a result of liver or kidney failure, but her blood tests for both are great, so they ruled that out. Next they were concerned she had a blood clot causing the meds and IV fluids to build up causing the swelling. This also came back negative, no clots found. Another round of visits by her transplant Dr’s, ID Dr’s and Allergy Dr’s. Talking to all the Dr’s, Meliss and I recalled she had a similar reaction when she was in the hospital when the boys were born, although we didnt recall what meds she was on. I tried calling St Vincents to get her medical records from 2007 but the records department is closed over the weekend, but I was able to get the consent form filled out and faxed over (cant believe they still use fax for this stuff, ridiculous). She slept most of the day again, and the nurses ensured me they had a close watch on her, so around 4pm I needed a break physically and mentally and headed home to recharge with the boys, got a mountain of laundry done for Meliss and had some other things to take care of at home trying to prep for her coming home.
Sunday morning Day +11, after a few unanswered texts and phone calls to Meliss, I jumped the gun and called the 7th floor of the hospital to checkin on her. She called back shortly after and was in the middle of another platelet infusion, but… fever was gone and blood pressure back up to normal! Finally some good news! I got back to the hospital a couple hours later, when I got there I could tell she was upset and she wanted me go into the bathroom to check the trashcan. I was a little hesitant because I have a weak stomach, but I walked in to find the trash can full of hair. I wasn’t surprised, for the last few days I was finding a lot of hair on her pillow cases and had been secretly cleaning it off while she was in the bathroom. She was going through enough and I didn’t want her to worry about her hair on top of it. The high dose and type of chemo she was on, losing her hair was almost guaranteed to happen, but she always kept a glimmer of hope she would be the exception. Even though it was expected, it came at a really bad time to start. The rest of the day and night we just talked, no TV, no phones (well, I texted some quick updates out), but we mostly just talked. She came to the conclusion she’s gonna have the nurses shave the rest of her hair the following day. They have a department at Dana Farber that will come to the room and size her head for a wig (although I dont think she wants one) or help with head wraps, etc. I’d be ok with a blonde, brunet, redhead, combo of wigs but not my choice. I’ll go get some info for her later this week to see what else they offer. Around 9pm the nurse came in for vitals and meds and she was out for the night.
Monday morning, I woke up around 3am at the hotel and couldn’t sleep. I paced back and forth in the room with my mind racing thinking about what I could do to help her. Ultimately I ended up shaving my head. This wasn’t some heroic moment, I’ve basically had a shaved head since 2007 and only started growing it back after she was diagnosed with MDS. But it’s the only thing I could do to help try to support her through this and I figured we do it together. I also did some more research on vitamin c injections and CBD/THC oils to help some of her symptoms (I did question the Dr about both later in the day but because neither are closely regulated they dont want to take the chance with possible infection while her counts are so low, maybe down the road it could be an option to reduce more meds – not shocked this was the answer). Got back to the hospital early, was still dark and Meliss was sleeping. Talked to the nurse for an update and the fever still gone and swelling and rash looked better to me, although she disagreed when she woke up. Unfortunately she had another new development today, her taste buds are shot and she’s got slight case of mucositis (ulcers in the mouth and digestive track) so eating is very painful. So more pain meds. Both issues are common from chemo and low blood counts. She also got a blood infusion as her red counts were low for the first time (totally normal – actually a good thing it took this long). Shortly after she got her hair buzzed, she was pretty emotional but she looks great, she can pull off any look, and looking pretty hot in her head wraps. She also had an Echo heart scan today, everything looked good all valves and chambers in her heart are pumping strong. This might have been the last checkmark for root cause of the swelling, so all signs point back to the first antibiotic. Plus I brought some new sheets and pillow cases from home to rule out a reaction from the sheets. She is feeling better but after another long day she’s back to sleep now.
The good in all of this is she hit the bottom of her counts and made it through and is trending up in the right direction. She’s tough as nails! Fever is still gone, and she was more alert and moving around better today. They were talking about putting her on a steroid if things got worse, but it could have a potential negative impact on the grafting so they held off, and now she’s pretty much in the clear of needing the steroids. Plus all the testing for any major concerns they had, all came back negative, which is good. We just have to wait this out at this point. Other great news is her white blood counts over the last four days have ben increasing, normal levels are around 4.00-9.00 for a female, hers on Friday were 0.03, then 0.04 Sat, 0.06 Sun and 0.09 today. The numbers are still extremely low and we can expect variations but trending in the right direction and first signs of the new marrow grafting! Very exciting! She will also get her first scheduled Granix injection today (human growth factor) which will help spike her numbers higher. The nurses think she will start feeling more like herself in the next few days, and as her numbers climb the white blood cells will clear up a lot of her ailments and we can hopefully start pulling her off some meds.
I apologize for the delayed update and extremely long post. I’ve been holding out for some good news. I’m trying not to hijack her blog talking from my point of view 🙂 The primary goal is to update family and friends on her progress (especially when she is unable to herself), but at some point we want to share this website with the MDS foundation in hopes someone else (or their caretaker) about to go through a BMT can benefit from this blog in some way, so details, emotions, ups and downs are all important to document.
Keep the thoughts and prayers coming! I’ve been reading them all to her.