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Journal entry by Leslie Cavanaugh

Day +78

Can’t believe it’s been 10 days since my last post.  Good things are happening here in Cincinnati! At Alyssa’s last doctors appointment (last Friday) we were adamant that something different needed to be tried to address the swelling in her knees, ankles and feet.  It was getting to the point where even 20-30 minutes on her feet was creating a ridiculous amount of pain and swelling that was then causing her to become immobile. To think that she was going to have to deal with that for 2+ months (until she was off steroid) was just not going to cut it.  So, Dr. Nelson allowed her to reduce her weekly steroid taper by 20mg instead of 10mg and then put her on a different diuretic. With 24 hours on this diuretic, her swelling was noticeably improved.  And for the last 3 days, her feet and ankles have looked completely normal.  She’s still having pain, but nothing like it was before.  She goes back to see the doctor on Friday, so maybe he’ll continue to allow a little bit faster wean off the steroid. One thing I have learned throughout this process is, you better take ownership of your illness/pain/recovery.  I know these doctors have her best interests at heart, but they are not infallible and they do not have all the answers.  Lots of things are trial and error and if something is not working, it’s time to try something else. 

Now that she’s got this swelling under control she has become much more active.  She does “mini” workouts here at the house and tries to walk a mile or two each day.  It certainly helps that the weather has gotten better.  Her PT schedule is a bit erratic...they were only able to get 4 appointments scheduled for this month (too many patients, too few therapists). Her first session isn’t until May 14, but she’s doing plenty of stuff on her own so I’m not sure that’s even a big deal.

Yesterday was her 23rd birthday.  Her best friend from college (Jess Lucas) came up to see her and Jared is here for several days.  So that made her VERY happy.  We just celebrated by going out to dinner.  She got a new bike for her birthday and is very excited to start riding. The last 8 months have almost become a blur.  It’s easy to forget how much she has been through in such a short period of time.  If she didn’t have her chubby steroid face and fuzzy head, there are days I wouldn’t even know how sick she was just 3 months ago. (Check that...1 month ago she was in horrible horrible pain from GVHD) The body is an amazing thing.  But even more amazing I think, is how much someone’s will to get better can make such a difference.  She’s convinced herself that this nothing more than a blip on her radar and she is going to move forward with her life.  I know she still has a long recovery ahead of her and I’m terrified that a random exposure to someone sick can easily put her back in the hospital. But you can’t live your life fearing all the “what if’s”. I know first hand that Alyssa doesn’t and I love her all the more for that.

Journal entry by Leslie Cavanaugh

Day +68

Not too much to report.  Alyssa had 2 follow up appointments last week, both went well.  She is continuing to receive a drug call basilixamab (infusion) 2x a week outpatient. This works almost as a booster to the steroid to help with any lingering GVHD. She has 2 more doses this coming week, and then they will discontinue it.  Her daily pill count is between 35-41 pills, depending on the day of the week.  Yes, she takes 41 pills a day! Hopefully, she will be able to get off several of these meds in the coming weeks. I’m assuming her doctor’s appointment will maybe drop to once a week, but who knows.  The steroid taper is longer than we thought.  Because she was put on such a high dose (currently at 100mg/daily) they have to wean very slowly and hope that there is not a GVHD flare up.  She reduces the steroid 10mg every Friday, so at this rate her last dose will be July 4. The swelling in her feet and ankles continues and of course with that much steroid, her face has definitely swelled up as well. (The telltale sign of a steroid)  Her labs were all good last week...WBC, ANC, and hemoglobin were all good, along with testing negative on the blood panel for any viruses.  The only thing that was a bit low were her platelets.  Not low enough for a transfusion, but they will keep an eye on it.  She has her outpatient PT evaluation on Wednesday that will determine an exercise program for her. I think they said she will do outpatient PT twice a week at hospital, but I’m sure she will continue to do some minor workouts at home. She’s making baby steps to get her muscle strength back, and that’s going to get frustrating for her.  I’m just happy to see her care enough to start working out in whatever capacity. Prayers that her good progress continues!

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Journal entry by Leslie Cavanaugh

Day +62

Alyssa continues to improve each day.  The first day home her feet, ankles, and lower leg started to swell pretty bad.  They suspected it was just fluid (not really sure why) but she started on lasix Saturday morning and has definitely seen improvement over the past couple of days.  Her ankles actually looked normal this morning when she first woke up, but a few hours later, after walking around, they were definitely in the “cankle” category again.  The pain though has definitely improved and she has started weaning her dilaudid dose down. Her skin GVHD looks 100% better, with just some mild discoloration that should eventually fade.  She has to be SUPER vigilant about sun exposure, not only from the BMT but from the GVHD as well.  She wears a 50 SPF and is pretty good about keeping her arms and legs covered. This is going to be an ongoing battle with warmer weather starting.  I’m constantly nagging her about grabbing a hat, or putting more sunscreen on.  The lake house should be a fun battlefield this summer 🤦🏼‍♀️. 

Alyssa is still on a steroid (along with about 8 other medications) and they will continue to titrate that dose down over the next 7 weeks.  It does affect her mood somewhat, but her appetite...well, let’s just say the girl does not miss a meal (or a snack). We tease her a lot about it, and she takes it all in stride.  Her attitude is back and we are very happy to see her feeling good again.  I try and get her up and out doing something each day.  Hope has been with us for the last 2 weeks and we enjoy taking her to the dog park each day.   Our Airbnb is in a great central location and we’ve enjoyed checking out new places to eat.  Just hoping and praying that each day she continues to get stronger.

Journal entry by Leslie Cavanaugh

Day +57

Quick update. Still in hospital. Coming off pain meds has been trickier than any of us thought.  She does great for several hours when out on pass, but then by evening/overnight, the pain really increases.  She has officially switched to having all her meds by mouth, but she has a standing order to get an IV dose of dilaudid whenever she feels like she needs it.  Going to see how this goes for the next 24-48 hours.  New target date for discharge is Friday. 

Journal entry by Leslie Cavanaugh

Day +53

Well, I was waiting to make an update once Alyssa got out of the hospital, but this is going on WAY longer than I first thought.  She’s still inpatient, being treated for the GVHD and it’s been an ordeal.  I think she’s finally turned the corner on this thing in the last 2-3 days.  Peeling skin is looking better, and she definitely is complaining less about the itching.  The pain/burning sensation is still hanging around though.  Once she gets all of her meds moved to pill form, she can be discharged.  She’s good to go on everything but her dilaudid (pain med). She gets much faster relief when getting it through her IV line.  Her plan right now is to try and go to pill form tomorrow (while she’s still inpatient), see how that goes, and then get discharged on Monday.  I have a feeling there might be an extra day or two built in there though.  She has been getting out on a 4 hour pass every day since last weekend.  And I definitely see a change in her energy level.  Eric went and picked up Hope last week from my brothers and that has been a big motivation to get her out of the hospital. Fingers crossed that she gets out in the next couple of days.

I also realized that at Day 53, we are past the hypothetical “halfway mark”. The rule of thumb is typically 100 days post transplant before they want you to leave the vicinity of the hospital. I’d love to tell you it has flown by, but that would be a big fat lie.  We have settled into a sort of routine though.  Eric and I typically trade off on getting to the hospital early for rounds. She usually takes her pass from about 1-5pm.  Eric’s fine with just sitting around the house, but I’m a bit more demanding and want her to go do something/anything (grocery run, cook lunch or dinner, dog park, etc). She has way more energy now then when she first got discharged back in March and I want to take advantage. After we take her back to hospital, we will grab dinner, watch a little TV and then bed.  I know, the excitement is just on another level.  We are trading off going back home during the week to check on things. Once back in Louisville for good, I’m quite sure we will have a new normal, before cancer changed our lives.  

Journal entry by Leslie Cavanaugh

Day +45

Its been a really tough week for Alyssa.  In fact, she said dealing with the GVHD has been worse than the mucositis and after effects of the radiation, chemo and transplant.  That should tell you how painful this has been.  The low dose steroid was not cutting it and they increased the dose, pretty significantly, on Wednesday. They will continue with this dose for 1 week and then will start to taper down over the month.  It’s mainly affected her hands, arms, feet and legs.  She is covered in an itchy rash that throbs.  Her skin has begun to peel and tighten and she spends hours applying various moisturizers and creams, trying to get some relief.  On top of that, the steroid affects her mood, and not in a good way.  Yesterday was probably the lowest I’ve seen her since she was admitted way back in February. Today her mood is much better and I’m praying that she may have turned a corner on this.  She got out of the room, up to the PT floor and we are hoping for a 4 hour pass tomorrow. Her rash doesn’t necessarily look any better, and it really seems to change throughout the day if it’s itchy or throbbing and painful.  They are adding a second drug that will pretty much neutralize any remaining T cell activity (if the steroids didn’t already do that). So, prayers that this weekend she starts to show major improvement. 

Unfortunately Alyssa never got to visit with Hope last week.  I promised as soon as she gets discharged that I will go get her again for a visit.  With the weather changing, it’ll be easier to deal with the dog at the rental house.  I cannot thank my brother Chris and Terri enough for helping us out with Hope.  It’s been a relief to know that she’s being taken care of and that I don’t have to worry about it.

Journal entry by Leslie Cavanaugh

Day +41

Well, they finally think they have Alyssa’s rash figured out.  She has graft vs.host disease (GVHD). They still think it started as an allergic reaction to her antifungal, but then this cascade effect started.  She received viral specific T cells (VSTs) prophelactically as part of a clinical trial. To recap, these VSTs are actually Eric’s T cells that have been “re-engineered” in a lab to fight specific viral infections which can be very harmful to BMT patients.  They normally wait to give them if/when a patient tests positive for certain infections.  In Alyssa’s case, they just went ahead and gave them to her to see if it would actually reduce the odds that she would ever get these infections.  But in doing so, the T cells that were given to her 2 weeks ago have now caused a mild case of GVHD.  And buried in the fine print of her consent form, it does say there’s a small probability that this could happen (nothing like reading this after the fact)  So, they are going to have to give her steroids now as that is the only way to treat GVHD.  But they are going to give her the smallest dose they can to treat the disease, but not “ruin” the potential benefit of the T cells.  (Crash course: T cells are needed to fight foreign invaders in your body...viruses, bacteria, cancer cells) Alyssa’s T cells were destroyed prior to her transplant when she went through radiation and high dose chemo). They still also have more of Eric’s VSTs banked in case another dose was needed in the future. Her body will eventually start making them on its own again, but that won’t happen for probably at least 6 months, which is why BMT patients are so vulnerable to infections. And some GVHD can actually be a good sign that the body has recognized any possible remaining cancer cells and is attacking them.  Alyssa’s GVHD is considered a grade 1 (out of 4) since its only prevalent as a rash on her skin.  And if this is a 1, I can only imagine how awful a grade 4 must be.  So the plan is to start the steroid today.  They will keep this dose for 48 hours and then see where she’s at.  Hopefully, they won’t have to bump up the dose to see improvement.  But at this point, we are just really glad they’ve figured this out and there’s a plan to treat it.  Five days of “Lets just see how she looks tomorrow” was getting really frustrating. 


Journal entry by Leslie Cavanaugh

Day +39

Quick update-not even 5 hours later, after writing last post, Alyssa ended up back in the hospital. The rash was getting worse and the only drug that is an option to treat has to be given as an IV through her port. I was in Louisville for a quick turn around to check on things at the house when she was admitted.  When I got to the hospital yesterday afternoon, they had already decided to discontinue the Nubain they were giving her as it really wasn’t helping.  As of right now she’s receiving benedryl, diluadid, and Ativan through IV. Not sure what’s causing this, because if it had been a drug interaction like they first suspected, it should be getting better, not worse, as she’s been off that drug for almost 3 days now.  Graft vs. Host Disease (GVHD) would be the next suspect, but because she received a T cell deleted transplant, that makes it highly unlikely.  I just hope they figure this out soon.  She’s absolutely miserable with the scratching.

Journal entry by Leslie Cavanaugh

Day +37

Alyssa is a little over one week from discharge and, for the most part, things are going well. Jared was able to make it to Cincinnati on Friday afternoon which was a long time coming for Alyssa.  She probably tried to do a little bit too much while he was here and was paying the price by Sunday afternoon when he left.  She’s literally been sleeping 18 hours or more each day...to the point where I’m having trouble waking her to even take her medicine.  No fever, and doesn’t really feel bad, just says she can hardly keep her eyes open.  Bloodwork/labs all look good.  She continues to do well without needing platelets or transfusions, which is pretty miraculous.  She did have an allergic reaction to one of her new meds...horrible itchy rash all over her arms and hands.  They think they know which one it was and will swap out with a replacement. She’s had several clinic visits so far, but after this week, she is just scheduled for Fridays.  She has PT evaluation today at 5pm and they will come up with her outpatient therapy plan. Should be interesting, given her current lack of energy.  At this point, I’m just hoping she doesn’t sleep through her appointment. 

An update on our Airbnb...as you know, I was having a heck of a time trying to find accommodations for us for after her transplant.  She was too old for Ronald McDonald House and Hope Lodge closed in the Fall.  I was fully prepared to just suck it up and pay for the AirBnB (really, what choice did we have?) The social worker at CCHMC gave us a few leads on organizations that might be able to help.  Enter The Bone Marrow Foundation.  Believe me when I say, timing is everything.  This non-profit just started a new program/partnership with AirBnB to help families that are facing housing issues during a medical emergency.  We are one of the first families accepted and they picked up the full tab for our AirBnB, which was a pretty substantial amount.  This was a huge help as the new year brought not only a 50% increase in the insurance premiums, we also started all over again with deductibles and out of pocket expenses. So, this really came at a good time.  And once again, something good has come out of this god awful experience. They liked Alyssa’s story and asked if we would be willing to be interviewed (assuming to promote the program) The interview was set up for yesterday...and Alyssa wakes up with that above mentioned horrible rash that’s gotten worse and she now has a swollen face, nose, etc.  They wanted to see her immediately at the hospital. Three hours later, and Alyssa is in no shape whatsoever to be interviewed, so I agreed, very begrudgingly, to sit for the interview by myself.  I honestly don’t know how Eric gets out of these things...he was her BM donor and I personally thought that was a much more interesting story. And this was no “sit down and talk into a recorder” interview.  There was a crew of 4 and they had set up cameras like I was going to be doing the R.Kelly interview live. Anyway, it turned out fine...no one I know will ever see it, so that’s the good part. Plus the lady from the Foundation and I hit it off immediately and I promised her I would give The Bone Marrow Foundation a shout-out on this site. 

I continue to hope and pray that Alyssa’s strength will start to improve. Her body has just been through so much in the last 6 months. I really don’t know how someone that wasn’t in her good physical shape prior to a transplant, would be doing right now.  Just taking it a day at a time.  Hoping also that this warmer weather will inspire her to get out and at least take short walks. I’m bring her “baby” Hope back to Cincinnati with me on Friday for a short visit.  I know just seeing her dog will cheer her up.

Journal entry by Leslie Cavanaugh

First round of chemo in the books and Alyssa did great.  No signs of any nausea or extreme fatigue. She decided to go public with her fight and the outpouring of support has been overwhelming.  Please keep the positive messages coming, especially if you or someone you know is a leukemia survivor.  
Alyssa’s Story

Site created on September 7, 2018

Our beautiful 22 year old daughter was diagnosed on 9/5/18 with Acute Lymphoblastic Leukemia (ALL). She is a recent WKU grad where she played volleyball for 4 years, leaving WKU as their  most decorated female athlete ever. Alyssa is a fierce competitor and fighter.  We know with God’s grace and her tough attitude, she will see her way through this journey.

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