Journal

Journal entry by Leslie Cavanaugh

Alyssa finally got discharged today.  After much trial and error, they finally came up with the right combination of pain meds to keep her comfortable.  Nothing like taking 9 days to figure that out.  

On a much happier note...today officially marks her 1 year anniversary of her cancer free date! Thanks to all of you for your continued love and support over the last 16 months.  We absolutely could not have survived this without it. 

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Journal entry by Leslie Cavanaugh

Alyssa’s ordeal with the GVHD continues.  She ended up in the emergency room at CCHMC on Monday.  She had basically spent the previous weekend barely moving off the couch.  Chief complaints were pain, shortness of breath, extreme fatigue, and no appetite. I kind of decided this had gone on long enough and we made the trip up to Cincinnati. She was admitted within 2 hours of being seen.  

Her lab work revealed extremely high count of lymphocytes, which meant her GVHD was highly active. No surprise there. Her cramping and diarrhea have been under control, but her skin is another story.  Her poor skin is just a mess.  Red, itchy, peeling and she’s constantly freezing. Dr. Nelson ordered an injection of something called campath which works rather quickly to get an extreme flare up under control. She’s had 3 injections so far, and it seems to be working at least as far as her blood counts are concerned.  Her biggest ongoing issue is to get her pain under control. She’s been on high dose IV pain meds since Tuesday. The plan is to move her off the IV and onto oral meds.  They tried this overnight without much luck.  So, giving it another try starting later today. They want to make sure the pain can be controlled by pill form before they discharge her.  This is turning out to be harder than we all thought. A week in the hospital is not what we were expecting.

In spite of the pain she is in, she’s had a positive attitude and was even up for visitors last night when Matthew and Emma came up for pizza in her hospital room.  So prayers that my warrior can feel better soon and get home.

Journal entry by Leslie Cavanaugh

A lot has happened in the past month, and none of it good, unfortunately.  Within 24 hours of leaving CCHMC and her glowing health report from Dr. Nelson, Alyssa’s skin rash came back with a vengeance.  This continued for the next week.  At this point, Dr. Nelson had left the country on vacation for 3 weeks and because we were now into Christmas week, we didn’t have a lot of options on getting her in somewhere.  It was bad, but at this point, not bad enough for hospitalization. A skin biopsy was ordered and we were able to get her into a derm/oncologist here at Nortons.  As soon as the doctor walked into the exam room, she took one look and said “you have GVHD”. She said we will still do the biopsy, but skin biopsies are not ever really conclusive on any one diagnosis (it could be GVHD, it could be viral, it could be dermatitis...you get the picture) but based on everything else going on with her, she said she was almost 100% certain it’s GVHD.  And at this point in time, because she’s past the 100 day post-BMT mark, it’s no longer Acute, it’s considered chronic.  So there it is...she now has chronic GVHD. This can be a very serious complication and can manifest in all kinds of nasty ways...skin, eyes, gut, liver, etc.  Dr. Jung prescribed some steroid cream and said that there were other ways to treat it, other than steroids.  Since the prednisone was not working, she has what is called steroid refractory GVHD. Alyssa managed to get through the holidays, and by January 4-5, the rash was getting significantly worse, and now she was having issues again with the diarrhea and cramping.  She was admitted to the hospital up in Cincinnati last Thursday.  The plan was to run all kinds of tests, and Dr. Nelson also brought in a second doctor that has more experience with GVHD. She got scoped as well.  Every test confirms it is GVHD. So the plan is to start her a new drug, Jakafi, and he wants to see her back in 2 weeks.  


As of right now, her skin is peeling off in layers, exactly what happened last March.  She is in constant pain from the burning, she’s always freezing because she’s unable to maintain her body temperature and we’ve been waiting since last Friday to get this new drug started because it had to get approved by insurance.  

I think this is as bad as she has felt since her BMT. My heart aches for her.  It just seems like she can’t catch a break.  She’ll feel good for maybe a month or two, and then right back to feeling like crap.  The studies on this drug are promising and I pray she is one of the lucky ones that responds to treatment. Please say some prayers for my girl, she really needs it right now. 

Journal entry by Leslie Cavanaugh

It’s been awhile, so this may be a long post.  

We spent the day at CCMHC yesterday for routine follow up.  After her last steroid wean, in mid-November, Alyssa started breaking out in this dry, itchy red rash.  Started on backs of knees, then arms, trunk, legs etc.  it ranged from looking like just dry skin to these small raised red bumps.  I was very concerned that her (skin) GVHD had relapsed.  We called the Dr, sent pictures, and he prescribed a steroid cream for now.  Rash continued for next 3 weeks, some days better than others.  By the time we got up to Cincinnati yesterday, it actually looked 100% better.  Dr. Nelson does not think it’s GVHD at all, probably something viral.  In addition to it being winter, and being indoors with heat on, her skin was also getting very dried out.  He recommended continuing the steroid cream (sparingly) and just being diligent about super moisturizing every day. So that mini-freak out about GVHD was for nothing.  She did have appointment with an ophthalmologist.  She’s been complaining for a few months about dry eyes, blurred vision, etc.  She’s been on steroids now for almost 10 months and they can cause all kinds of problems with the eyes, mainly cataracts.  Found out you can also get GVHD in your eyes, and she’s certainly had her issues with that.  But everything checked out fine, eyes looked healthy, and she’s just got dry eyes, probably from medications. Nothing that artificial tears can’t fix, so that was good. So bottom line, Alyssa is basically like a dried out prune right now. 

Yesterday was also a BIG day...she FINALLY got her port out!!  In the cancer world, this is a big thing.  It kind of signifies the official end of chemo and longs days attached to an IV pole. While Alyssa hasn’t had chemo in almost a year, she’s definitely has had her setbacks that required many, many infusions.  The only drug that we foresee her needing for the immediate future is IVIG infusions.  She will continue with these every 5-6 weeks for about another 6 months or more.  (Back in June when she tested positive for the Epstein Barr virus, they had to give her a drug called Rituxamab.  It treated her virus, but it also wiped out her ability to produce B cells for at least a year or more.  B cells are an important part of your immune system. So until her body can start making them again, she will get the IVIG infusions). Luckily these can be done in Louisville, so not too much of an inconvenience. 

So, as of now, Alyssa does not need to go back until February, 2 whole months from now! That will put her right at the 1 year anniversary of her BMT, a pretty significant milestone. There will be a battery of tests/procedures done then...Echocardiogram, PFTs, Dexa scan, etc. The one test he will not be doing is a bone marrow biopsy.  That’s the biggie, the one where they check under a microscope if any of those god awful cancer cells are floating around in your spinal fluid. Because she had to have one done in July (when her labs looked terrible and he thought there was a chance she might have relapsed...the second, single worst day of my life) He just doesn’t think it’s necessary.  His logic is, it’s only been 6 months since last one, labs are all looking great, she feels good, so there’s just not a need to do it.  Plus it’s highly invasive.  I’m going to attach a link at the bottom so you can see what this procedure actually looks like.  And Alyssa has probably had 5-6 ? of them at this point. I am perfectly fine with this plan.  I cannot even begin to describe the agony of that 24 hours you have to wait to get preliminary results.  It’s honestly like time stands still and every horrible thought you’ve had about your child and cancer races through your mind non-stop. So, yea, I’m good with skipping it.  Alyssa, on the other hand, was not so easily convinced.  She’s like “I want proof I don’t have cancer”.  He explained again his rationale, and convinced her that there would most DEFINITELY be other symptoms indicating a relapse.  So, for now, no biopsy and that’s a good thing. 

Last weekend, Eric, Taylor, Alyssa and I went to New York City. We were guests of the Bone Marrow & Cancer Foundation. This was the organization that paid for our Airbnb in Cincinnati.  In return, Alyssa helped sponsor several fund raisers for them that raised over $15,000. It was awesome to be able to pay it forward.  We stayed right in Manhattan and I’m telling you, Christmas in NYC is like no other.  It was amazing to see all the decorated stores along 5th Avenue, the big Christmas tree and ice skating rink at Rockefeller plaza and the highlight was the dinner and Rockettes Christmas show at Radio City Music Hall.  No way could anyone sit through that and NOT be in the Christmas spirit. It was a great 3 days and we walked over 24 miles while we were there.  So, yes, 3 days was plenty of time to do everything we wanted to do.  The folks at BMCF could not have been any nicer and we felt like royalty while we were their guests. 

I’ll close for now.  Wishing everyone a very blessed holiday!


Video of bone marrow biopsy. Warning, it’s pretty graphic! (And yes, Alyssa was pushing to get this done in February... Crazy.)

https://www.youtube.com/watch?v=3hzVvCl8UkM

Journal entry by Leslie Cavanaugh

Alyssa had her routine follow up appointment yesterday in Cincinnati. And it went really well🤗. Dr. Nelson wanted a consult with an endocrinologist regarding her steroid wean. Dr. Howell was awesome and talked about several different things regarding how hormones in the body react differently after chemo/BMT. We now have a full calendar showing each time she’ll wean down (every 3 weeks). At this rate she should be on the lowest maintenance dose sometime in March and (fingers crossed) will finish the wean in April. He did say that if there is any issue with the taper, then he’ll just slow it down and wait for her body to adjust.  Any type of illness may require a boost, but that would only be for a few days and then she would go right back to the scheduled dose.  All in all it sounds like a solid plan and it was nice to see it all laid out. Her swelling should slowly subside but he was fairly sure she would have to be off steroids completely for a month or so for all the swelling to disappear.

At our appointment with Dr. Nelson we were talking and he caught us off guard when asked Alyssa what her long term plans were.  She was like “for the weekend?” He laughed and was like no, like your “life” long term plans.  I can’t put in to words how happy it made me to actually be talking about the future.  We’ve spent the last 14 months taking everything one day at a time.  It’s going to take some time, thinking about long term plans. Alyssa has a lot to figure out but she’s got some time. Her “big girl” after college job (whatever that turns out to be) will still have to wait until after February when she’ll be cleared to work.  She will also need to decide if she’s going to stay in Bowling Green or come back to Louisville.  These are all good problems to have.

Her labs were all good and he said he’d like to see her back anytime before the end of the year.  Again, this took us by surprise and I mean in a good way.  So she’s looking at next appointment in mid-December and she’ll finally get her port removed at that time also. 

Alyssa has planned a little impromptu trip to see a good friend who lives in Boca Ratan.  She’ll fly out next Monday and come back the following Friday. The change in scenery should be really good for her and I’m happy she’s starting to do “normal” things again.
All in all, this is exactly what we have been praying for since her BMT.  it’s still very possible that there will be some bumps in the road, but the closer we get to the 1 year mark on her BMT, the less likely there will be complications from the transplant. 

 

Journal entry by Leslie Cavanaugh

Officially finished with infliximab (Remicade) infusions!!!  I think she ended up getting about 15 or so of them since mid-August. Her GVHD is significantly better.  At this point, he’s just going to leave her on a low dose steroid to help reduce the risk of a flare-up. She was switched from the prednisone to hydrocortisone at her last visit and she seems to be tolerating this steroid a little better.

Alyssa’s labs all looked good at her visit on Friday.  Next appointment on October 31st.  He is going to have her see an endocrinologist at that visit.  He wants to get a second opinion on if there’s a better/faster way to wean her off the steroid completely.  Very happy we are getting a second set of eyes on her regarding the steroid wean. 

Alyssa is working out everyday, trying to get some her muscle tone and stamina back. Slow process but I’m so proud of her for doing everything she can to keep herself healthy.  This is probably the best she has felt in about 5 months.  Slow and steady....

Journal entry by Leslie Cavanaugh

Just got back from Cincinnati and things are definitely looking up.  Her lab work all came back great and the doctor is recommending 2 more Remicade infusions and he thinks that should do it.  He is also switching her from prednisone to hydrocortisone starting today. In about 6 weeks or so, he’ll repeat the colonoscopy to confirm that her GVHD is in remission and under control. Her symptoms (cramping and diarrhea) have greatly improved in the past month.  The steroid switch is a big deal and hopefully in a couple of months, she should see a lot of the swelling go down.  She will need to remain on the hydrocortisone for awhile.  He explained that a very slow steroid wean will reduce the chances that her GVHD would flair up again.  So, she has an infusion in Louisville next week, then back up to Cincinnati on the 11th for the last infusion and next steps. Prayers that she remains healthy. 

One request for everyone....PLEASE get your flu shot. (We got ours today, including Alyssa) If Alyssa (or any immuno-compromised person) gets exposed to the flu, it could have serious consequences.  With very few exceptions, everyone should get a flu shot.  And P.S. the flu shot DOES NOT cause the flu!

https://www.cdc.gov/flu/prevent/misconceptions.htm

Journal entry by Leslie Cavanaugh

Alyssa’s most recent doctor visit was last Friday.  While her diarrhea and cramps from the GVHD have improved significantly, Dr. Nelson still wants to continue the twice weekly Remicade infusions, at least for the rest of this month.  He did drop her prednisone down to 25mg daily, with possible weans of 5-10mg each week.  His plan with the steroid is to get her off the prednisone and back on the hydrocortisone. According to him, the hydrocortisone has less side effects, mainly the “moon face” and weight gain.  At this point though, she’s been on prednisone for so long it will still take many months for all her swelling to go down. And she will probably have to stay on the hydrocortisone into next year.

The good part is we get to see her for a few days every week, but I think the back-and-forth is getting a little old for her.  Her next doctor appointment is on September 27th.

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Journal entry by Leslie Cavanaugh

So here we are....exactly 1 year after we got the news that would change our lives forever.  On September 5, 2018, Alyssa was diagnosed with leukemia. 

 

Nine months after she finished her collegiate volleyball career at WKU, 4 months after graduating from college, 2 weeks after returning from Europe for a professional volleyball tryout and 48 hours after we spent Labor Day weekend at the lake celebrating all the good things in life.  

 

In just one year I’ve learned about cancer, chemotherapy, bone marrow biopsies, lumbar punctures, good blood counts and bad blood counts, insurance hiccups, denials and delays, how to research the best hospitals for her type of leukemia, bone marrow donor searches, bone marrow donor matches, active leukemia, remission, radiation, more chemo, bone marrow transplant, hair loss, chronic nausea and diarrhea, Graft vs. Host Disease, the devastation of long term steroid use, EBV virus, adenovirus, steroid weans, and more Graft vs, Host Disease.  I say I have “learned” but Alyssa is the one who has had to live with all of this and more. 

 

In one year I’ve learned that I have given birth to THE most incredible, brave, strong willed, most bad ass young woman that I’ve ever come across. I’ve learned that I have friends that would walk through fire for us. I’ve learned that family is everything and the rest of it, well, it’s just stuff.  I’ve learned that the kindness of complete and total strangers can make me believe in God again, just when I was losing hope. 

 

My prayers for the next year are simple.  Please God, keep Alyssa cancer-free.  Keep her struggles with the side effects of her bone marrow transplant to a minimum.  Keep her medical team on their toes and for them to always have my daughter’s best interest and care in mind. Please God, look out for my other 2 children as they are dealing with the fallout as well, from this horrible disease. Please God, protect our marriage from the stress and heartbreak of dealing with our child’s illness. I say prayers for the others that we’ve met on this journey, especially the McSweeney, Snyder, and Wilson families. I pray that this time next year, this will all be a distant memory. 

 

I know we are one of the lucky ones.  Alyssa has had access to the top doctors in the country.  We have insurance that is paying for the massive costs in fighting this.  We had money in the bank to pay for the things insurance didn’t cover. We have a support system in place that rallies behind us anytime there was a setback. I have to constantly remind myself that it could be worse.  

 

So, I’ll end on a positive note.  My daughter today does NOT have leukemia. I love my family.  I love my friends and I have to believe, in the end, this is going to turn out okay.

Journal entry by Leslie Cavanaugh

Alyssa’s Remicade infusions are going well.  She’s gotten 3 so far, 2 more scheduled for this week and one for next week.  Her next follow-up appointment is September 6th.  That’s probably the longest stretch she’s gone between appointments.  Her original discharge from Cincinnati (May 31), Dr. Nelson wanted to see her every 2-3 weeks. Unfortunately between the steroid wean gone wrong, the declining blood counts, the adenovirus and now the GVHD, she just couldn’t stay healthy long enough between appointments. Strong prayers that this is her last setback for awhile (well, forever would be good, but I’m a realist).

Last week, we had an opportunity to see an exhibition volleyball match between WKU and UK.  The UK head volleyball coach (Craig Skinner) had reached out to Alyssa’s former coach, Travis Hudson, wanting to do some type of fundraiser/tribute for Alyssa. The idea turned into a wonderful evening of top notch volleyball, and they ended up raising over $4000 for The Bone Marrow and Cancer Foundation.  This is the foundation that helped us with our living arrangements when we were in Cincinnati for 3 months. 
This is actually the second donation that was made in Alyssa’s honor.  Her former club team, Kiva, (thank you Ron Kordes) made almost a $6000 donation back in June.  It’s been a very humbling experience for Alyssa to be the center of attention and our whole family is grateful for the support of the volleyball community.

https://bonemarrow.org/

https://t.co/DAs4O6M9VU

https://on.ncaa.com/mzd8z

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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