Journal

Journal entry by Leslie Cavanaugh


Alyssa’s GVHD did not show much improvement when she was switched back to prednisone. Decision made to up dose to 30mg daily.  This was about a week ago. Her skin was still a mess, no energy, freezing all the time.  She also tested positive for 2 separate viruses, EBV and HSV. These are very common viruses that most people have and don’t even know it.  But once they are in your body, you will always have it, but they are almost always dormant...until they “wake up” and realize you have no immune system to fight them.  Then they go crazy.  EBV was treated with a Rituxin infusion (she’s had this before, back in May, same treatment). The HSV was another story...it produced these horrible open blisters all over her body that were extremely painful.  On Wednesday, the pain got so bad they needed to admit her to get her on a PCA (pain pump). They also started her on an IV form of an antiviral for the HSV.  I’ve never seen her so bad.  When she starts crying, I know she’s in serious pain.  Flash forward 48 hours to Friday...they got her pain under control, the medicine started working and there was lidocaine cream for the blisters that in Alyssa’s words was a “game changer”. On top of that her skin GVHD is clearing up beautifully. She literally went from one of her lowest point to the best she has felt in months, all in 2 days.  She had a picc line inserted on Friday, because we were going to have to finish the 14 day course of IV med at home.  No problem, we’ve done that before.  PCA removed on Saturday and here we are on Sunday just waiting for discharge papers.

As much as I’d like to say that she’s finally turned the corner, I can’t bring myself to think it.  She’s been here before (although nothing like where she was at on Wednesday. That was just plain scary). It’s like PTSD. I almost feel like I can’t enjoy these victories because something always seems to be lurking around the corner.  I hate being like this and hopefully this anxiety will ease over time.  Alyssa is feeling better today than she has in over 4 months.  I need to feed off her energy. She’s in a good place and I’ve got to re-learn how to be hopeful and optimistic again.  I know I’ll get there eventually. 

On a separate note...for those of you who still are not taking this social distancing thing seriously... it’s time.  There’s no excuse for being so selfish. While we were in the hospital, a story broke that 18 Children's hospital employees tested positive for Covid-19. Mind you there’s not one Covid-19 patient being treated here.  So these were all people that somehow picked up the virus and then came to work...in a hospital...with the most vulnerable people that absolutely cannot afford to be exposed to this virus.  Of course, they never meant to intentionally spread this, BUT when you make a reckless decision to disregard medical advice TO STAY HOME, it puts people at risk. So please, please, do the right thing.

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Journal entry by Leslie Cavanaugh

We are back from Seattle and very glad we went.  The trip itself went very smoothly.  We left Bowling Green around 3pm on Tuesday, arrived in Seattle around 8pm local time.  There was a rental car waiting for us, literally right on the tarmac next to where the plane parked, so Alyssa did not have to walk through any type of terminal.  We drove straight to the Seattle Cancer Care Alliance (SCCA) housing.  Got up next morning, spent 3 hours at SCCA, boarded the plane at 2pm and back in Bowling Green by 8pm. Spent less than 16 hours on the ground in Seattle, and I feel like we took every possible precaution we could.

The medical staff was extremely thorough...we had 2 conference calls with them prior to her appointment to go over medical records, answer questions, etc.  Alyssa received a complete examination while we were there and current treatment plan was discussed.  Dr. Carpenter was in complete agreement that what CCHMC is doing is not working.  They made several recommendations on med changes (some added, some dropped) and want her seen more regularly at Cincinnati for the next month, to monitor progress while she starts this new treatment plan.  She is still in the middle of a severe skin GVHD flare, but one of the biggest takeaways is that she is not considered chronic, she is classified as “late acute”.  What he is seeing is more in line with what he would see 1-2 months post BMT. She is going back on prednisone, but at a significantly lower dose (20mg) than what she was ever started on before.  Seattle’s approach is to start at a much lower dose, do a much slower wean, over a much longer time frame.  So even though she wasn’t thrilled with being back on prednisone, at this dose, the side effects should be minimal. She’ll wean 1-2mg every 4-6 weeks and then stay on a low, maintenance dose for a year or more. We left very happy with the new plan and her current BMT doctor is completely onboard with all their recommendations.

So, that’s where we are today.  Of course with all this coronavirus stuff, that’s just adding a new level of anxiety. Please, please, even if you are not in an “at risk” category, take every precaution to protect those that are.

Journal entry by Leslie Cavanaugh

Where do I start...
Alyssa started feeling bad again within 2 weeks of her discharge. This past Monday (2/24) she was admitted back into the hospital with a severe skin GVHD flare. Again.  The first morning of rounds with the on call BMT doctor had my head spinning.  He’s got all kinds of suggestions, recommendations, tests he wants done...half of which her regular doctor has never mentioned.  So here she is once again, caught in the middle of a bunch of doctors that can’t get on the same page.  I’d really had enough at this point and as every mother knows...you don’t piss off mama bear when her child is hurting.  I requested a sit down with the department chair to explain that this has got to stop.  She needs a real plan and everyone needs to get behind it. Dr. Davies spent a good amount of time talking to Alyssa, examining her, and asking lots and lots of questions.  She throws out several suggestions on things we can try. Within an hour of our conversation, she walks back into our room, with a sticky note, no less, and proceeds to let us know what’s going to happen moving forward.  Number one is...the BMT staff is going to get on the same page. Several changes are being made and I have no idea how much or if any of this new plan may get changed once we meet with the doctors in Seattle. The second hurdle Alyssa needs to get over is getting her pain under control. She is suffering terribly from this disease and it’s getting harder for her to get relief.  Her pain team came in today and we now also have a plan for that. (I’m starting to sound like Elizabeth Warren) They mixed some things up but want to observe how she handles the changes before they discharge. So right now target date to go home is Sunday.  I honestly thought when she was admitted Monday, she’d be here one night. Oh well.

So now for a really cool story...on Wednesday we found out that her consult in Seattle got moved up to March 11, which is fantastic news.  Within minutes the reality sets in that we have to take a pretty sick kid, with basically no immune system, clear across the country, on a crowded plane, in the middle of what would normally just be a bad time to travel with cold and flu season.  But of course, we are now looking at daily headlines of a possible pandemic from this Coronavirus. We made the bold decision to put a plea out on Facebook to see if anyone knows anyone that might have access to a private charter jet. The response was overwhelming to say the least.  And then, within hours, a guardian angel entered our lives and offered up his private jet to take us to Seattle. This man, who is a stranger to us, lives in Bowling Green, is a WKU graduate, and has been following Alyssa’s story from the beginning.  Then his co-owner of the jet volunteered to split the VERY substantial cost of the charter with him. While initially wanting to remain anonymous, we have been given permission to give out their names. David Chandler and Dan Renshaw...I cannot thank you enough for what you are doing for our daughter.  The random people that keep popping into our lives, changing it for the better, will never cease to amaze me. Alyssa and her story have apparently struck a chord with a lot of people and in return, God keeps putting these angels in her life, helping her on her way.  I think back from the very beginning when she was first diagnosed, and the outpouring of support that she received, from total strangers, and well, it’s hard not to believe that God has this plan for her.  And I think it’s going to be a good one.

Journal entry by Leslie Cavanaugh

Today is another milestone date in Alyssa’s cancer journey. One year ago today, she received her new stem cells from her dad.  I wish I could say the past year has flown by with no issues.  The unfortunate reality of a BMT is that unless you’ve lived it, you have no idea how difficult this recovery is.  Alyssa’s cancer journey lasted just a little over 4 months.  She never really felt that sick and her rounds of chemo were very well tolerated, for the most part.  Her BMT Journey, now marking one year, has been an entirely different experience and the culprit has been the graft vs. host disease (GVHD). This disease has forced her into rounds of high dose steroids, which in turn adversely affected her newly forming immune system, preventing her new stem cells from healing her body.  While we thank God every day she no longer has cancer, she’s been dealing with a host of other problems from chronic diarrhea, to now having her entire skin peel off twice.  And yes, it’s as painful and horrible as it sounds.  It affected her hair follicles which meant significant hair loss, causing her to shave her head again.  This latest flare of GVHD is still lingering, despite her 8 day hospitalization and new treatment of a drug called Jakafi.  She has her good days, but they always seem to be followed by 4-6 bad ones.  She’s just tired of being sick all of the time and I know, even as recently as 4 months ago, thought she’d be well on her way to job hunting and living on her own.  I don’t know how she does it, but she still manages to stay positive and hopeful that this GVHD flare will be over soon.  

After speaking to her BMT team in Cincinnati, we’ve decided to get a second opinion on further treatment at the Seattle Cancer Care Alliance (Fred Hutchison Cancer Research Center).  They were the first hospital in the country to perform stem cell transplants and their Long Term Followup Center is renowned for treating many of the complications that can arise from a transplant. As of now, her appointment is scheduled for the first part of April.  If there’s any opportunity they can see her sooner, we will take it.  

I think sometimes how difficult this has been as a parent, to see your child suffer and knowing you would do anything to make it stop. But I‘m going to take a page out of Alyssa’s notebook and try to remain upbeat and positive. We are extremely optimistic that we will get some answers in Seattle and Alyssa can move on with her life.

 

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. 

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

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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