Journal

Journal entry by Leslie Cavanaugh

WE ARE HOME!!!!

I cannot begin to describe how happy it makes me to write these words.  Alyssa spent 108 days in Cincinnati, 56 days of that in the hospital. What a journey.  

Our last day was spent repeating a lot of the tests they first did before her admission...pulmonary function tests, 6 min walk test, Echocardiogram, etc.  The EBV count that they were alarmed about just a week ago, seemed to respond to the IV medication with flying colors.  To recap, her virus count went from 90,000 to over 500,000 in less than a week. “Alarmingly high” I believe was the word they used...(basically we are panicked but we can’t really say that without freaking you out) She was given the Rituximab last Friday and her lab count came back on Thursday...virus level was around 3,000.  In my layman’s mind I’m thinking, that’s good, right? Well, come to find out that Dr. Nelson would’ve been happy if the number dropped to the 100,000s. So a 3,000 count was pretty impressive.  Alyssa’s little pep talk really worked!!  They gave her one more dose on Friday to see if they could get it down to zero.  Labs will be drawn here in Louisville on Tuesday, so we shall see.  I’m pretty confident we will not be making any trips to Cincinnati for a Rituximab infusion.  Her bone marrow biopsy also came back ALL CLEAR!  She will get her next biopsy...never.  He said unless there is a very strong suspicion that something concerning is going on, she will not get another biopsy.  I have mixed feelings on this one.  It’s the only “proof” if there is ever a relapse.  But of course, she would have other symptoms that would raise suspicions.  I don’t know, it’s like a double edge sword. I like the thought of having this test proving she doesn’t have cancer.  But then having the test done on a scheduled basis and waiting for results every 3-6 months sounds pretty anxiety provoking too.  Alyssa also came off 3 medicines yesterday, she’ll come off 2 more once her steroid finishes up on June 13th.  So when it’s all said in done, she will only be on 3 medications...her anti-fungal, anti-viral, and her antibiotic.  I’m assuming she will stay on these for 6 months or more, until her immune system starts doing it’s job.  She will also receive an infusion drug, IVIG, probably every 6-8 weeks as well to help boost her immune system.  Other than that, she was sent on her way.  The 2 biggies are to avoid being in crowds (and if unavoidable, she must wear a mask) and stay out of the sun. Even a mild sunburn can trigger her GVHD. 

We packed up our little house in record time, although it was impressive the amount of stuff we had carted up there from home over a 12 week period.  Hope sat in the backseat and we headed down I-71.  

I will be posting less frequently now.  Always assume no news is good news.  Alyssa is ready to start her life again.  She won’t be able to work a “regular job” for awhile because of the precautions she has to take.  Her plan is to move back to Bowling Green in late July or August, start working out with her wonderful trainer, and maybe house or pet sit to earn a little money.  Alyssa and I have been together almost 24/7 for over 9 months now, and believe me, we have had our moments. Her moving out of the house will be bittersweet in the best way possible.

Thank you everyone for your support throughout this journey.  We could never thank you enough for all the prayers, cards, texts, phone calls, gift cards, etc that you all have sent our way.  I know I’ve said this before, but I do think that people are inherently good and even though I wouldn’t wish cancer on my worst enemy, I know there was a reason for all this.  Alyssa is going to go on to bigger and better things and it’s going to be fun to sit back and watch.

Journal entry by Leslie Cavanaugh

Day +95

i should know by now not too get too excited about good news.  Less than 24 hours after my last post, Alyssa was in the emergency room.  The night before she started vomiting, about 1-2 hours after her dinner.  She had been perfectly fine the entire day.  The exact same thing happened to her the week before...perfectly fine, and then about an hour after she ate dinner, starts to feel really nauseous, and ends up with diarrhea and vomiting.  The difference the second time is, she was running a slight fever, which can signal bigger issues.  So, we go to ER.  By the time we actually got there (after phone calls and delays), she was feeling 100% better and no fever.  Didn’t matter though, they wanted to see her regardless.  And after 5 hours, and finding nothing wrong with her, they sent us home. My whacked out theory is she had an allergic reaction to what she ate.  The common denominator in both instances was shrimp.  Not sure the doctors buy into my theory, and there’s no way to test her with her immune system so screwed up, but I’m sticking to my guns.  

One of the many labs she has done each week is a mouth swab. This is done to test for 4 main viruses.  Unfortunately this past week she tested positive for the Epstein Barr Virus (EBV). Her doctor was not surprised and said most BMT patients will end up with at least 1 of the 4. Luckily she doesn’t feel bad...just a little tired.  This is the virus that causes mono, so it makes sense (she does not have mono) Her counts increased pretty dramatically in just a few days so she is now on a drug called Rituximab. She can receive up to 4 doses weekly through an IV infusion. She got her first dose yesterday. They’ll do counts each Thursday to see if she needs to be infused on Friday.  This may screw up our plans for a clean break on the 31st, but Alyssa was going to have a pep talk with her body and convince it that next Friday needs to be it.  I’ll keep you posted on that one. 

Alyssa has several tests scheduled next week, in anticipation of her official “post 100 day” release. The biggest one is probably her bone marrow biopsy on Wednesday.  Prayers that she remains in remission and cancer free.  

It’s going to to be bittersweet leaving our little house in Cincinnati. I really have grown to like it up here. So much has happened since we arrived 4 months ago.  As much as I was dreading the move up here, it’s turned out to be a blessing in disguise. I know now that there would have been no way to keep her so isolated in Louisville after her discharge. This was just the right distance to keep her in a “safe” environment and allow Eric to commute back and forth to Louisville. Our new life after cancer awaits.

Journal entry by Leslie Cavanaugh

Day +87

We are inching ever closer to that 100 day mark.  The last 2-3 weeks have been really good ones for Alyssa.  She continues to get stronger and is wanting more and more to get back to normal activities.  In just the last week she started her PT workouts, gone to the zoo, taken a 2 mile hike in the park, and last night we hit up our first Reds game with Matthew Higgins and Emma Doroff (and randomly run into her former teammate, Kaelin Grimes). It’s been really nice for her to have a few friends here to do things with (Not gonna lie, it’s been nice for me too).

She sees Dr. Nelson (her main BMT doc) every Friday, where she also has bloodwork done. So far, everything is going according to plan. He is telling her now that her discharge date from Cincinnati will be May 31st (Day 101). She will have a bone marrow biopsy and other tests done the day before, and then he will see her probably once a month over the summer.  We’re not really sure what the plan will be after that.  But that sounds really good to us.

As I sit and write this, I cannot help but feel how incredibly blessed we have been.  Other than the GVHD she contracted, her recovery has been pretty textbook.  I’m almost afraid to even write these words because I know now, all to well, how quickly things can change.  I won’t ever get over the fear that her cancer could return or she could be exposed to some viral or bacterial infection, but I also have learned to look at each good day she has as a gift.  Honestly, none of us are given any guarantees about the future and watching someone you love go through this has definitely impressed upon me to live one day at a time and find joy in it.

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

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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