Journal

Journal entry by Leslie Cavanaugh

Day +14

On Friday, her BMT doctor threw down a challenge that she would get her ANC to 500 by Monday.  She was at 30 when he made this prediction.  Monday comes, she’s at 810.  Today her ANC was 1170!!  Her engraftment is really moving along nicely.  They are VERY pleased with what they are seeing.  The only setback she had was getting this Enterovirus last week.  Even though it’s fairly common and there’s nothing to do as far as treatment, it does prevent her from walking in the hallways.  The protocol is she has to wait 28 days to do that after testing positive, and hopefully we’ll be discharged by then. This is for the protection of other patients, not her.  People with normal immune systems would not even know they were exposed, much less show symptoms.  But because every patient on this unit is immunocompromised, they can’t take a chance of possible exposure.  There is a Plan B though...PT and OT can get her out of the room and take her downstairs to a workout room.  She has to have an ANC above 500 for 3 consecutive days.  So it looks like tomorrow might be the day.  

As her cells start start coming in, she’s going to feel kind of crappy.  This is normal.  She is having more flu-like symptoms (no fever) but just general muscle/joint aches and pains and low energy.  Dr. Nelson said she will feel like this a few more days.  There is a good possibility that she may even get a “Get out of Jail Free” card, otherwise known as a 4 hour pass from the hospital.  Lots of things need to happen first...no fever, weaned down on pain meds, and able to eat some solid food.  So, not 100% sure all that will happen, but it’s out there as a goal for the weekend.

They will be doing a blood test tomorrow to see what percentage of her cells are Eric’s.  If everything goes according to plan, as time goes on, each day more and more of her cells will match Eric’s DNA until eventually all her blood/cell DNA will match Eric’s.  For all you CSI fans, yes, if one of them commits a murder and leaves blood traces at the scene, the police will not know which one of them did it (As I’m reading this back, I’m imagining myself as the murder victim, and honestly either one of them could be a strong suspect.  Just a random thought as I enter Day 23 in this 10x12 room 🤔)

Keep the prayers and good vibes coming!

Journal entry by Leslie Cavanaugh

Day +17

Alyssa’s big news, as of Tuesday, Day 14, is, she is 100% engrafted!! This is very exciting news and way earlier than expected.  Her blood counts continued to rise this week, but we had a little setback last night when she spiked a 103 fever.  Tylenol brought it down fairly quickly and the doctors were not concerned.  This does delay her Day Pass, as they want her fever free for at least 24 hours...so maybe on Sunday.  Her blood counts this morning dipped a little from the rise she had been getting from last 5 days.  Perfectly normal, we are told.  There will be ongoing fluctuations for many weeks to come and no reason for concern.  Alyssa has been able to leave room for PT since Wednesday and yesterday actually did 1.5 miles on the stationery bike.  Pretty impressive considering where she was at just a week ago! They are hoping to get her off her pain pump this afternoon. This is a big step.  She will still have the option of getting pain meds through her IV as needed, but getting off the pump means that she is not hooked up to monitors 24/7. Her IV nutrition (TPN) is also being reduced again today.  Which means she’s got to start taking in calories by mouth.  She is eating a little more each day, but still it’s a battle.  She doesn’t really have an appetite and nothing tastes the same anymore.  She is forcing herself to eat only because she knows that’s what she has to do to get out of here.

While Alyssa continues to improve, I want to stress that she still has a long road ahead of her for recovery.  I think it’s been a bit misleading to some, that as I’ve reported all this good news, that she’s almost back to normal. Bone Marrow transplant is a grueling procedure.  The conditioning process (total body irradiation and extremely high dose chemo) she went through prior to her transplant can literally be fatal to some people. The mucositis, fevers, diarrhea and GI issues land a lot of patients in ICU. The excellent physical shape she was in prior to transplant has played a major part in how she’s handling everything now. With that being said, it can take up to 1-2 years for her to be fully recovered.  It will take at least 6 months for her immune system to be fully functioning again.  In the meantime, she will remain suspectible to infections. Hospitalizations after discharge are very common, which is why we need to stay in Cincinnati until late May.  And they will ALWAYS remain vigilant regarding relapse of her cancer.  She will have her first post-transplant biopsy done right before she’s discharged to confirm there are no cancer cells.  Blood work will be done, probably several times a week at first, and ongoing biopsies will be spread out over the next year.  She will also need something called IVIG.  This is a drug that will help boost her immune system while she’s recovering.  The doctors decided earlier to do something called T cell depletion on Eric’s stem cells...that, combined with the ATG she took prior to transplant, has greatly reduced the odds that she will get something called Graft vs.Host disease (GVHD), which can be life threatening. This is when the body sees the new cells as invaders and attacks them, almost like an organ rejection.  She went through hell for the 3 days she was on ATG, so now that that is behind her, it’s going to pay off going forward.

I certainly don’t want to end this entry being all doom and gloom, because the reality is, she is doing everything right and this has been a textbook case for BMT. Her doctors are ecstatic with her progress. BUT I need to be realistic; she’s going to have bad days along with the good ones.  I know she feels the love and support from everyone.  We want to thank everyone for all the kind words, cards, gifts etc.  They are greatly appreciated.
 

Journal entry by Leslie Cavanaugh

Day +21

Well, with all my bragging about how good Alyssa was doing, it came back to bite me on the butt.  About 12 hours after the last post, she started feeling REALLY bad. Chronic nausea, vomiting, high fever, diarrhea, coughing...you name it, she had it.  The one thing the doctors kept stressing throughout ...”this is perfectly normal, she will have bad days”. The silver lining in all this, was that her blood counts are still very high. Her numbers are good (and still are).  They ran a multitude of tests to see if they could pinpoint an exact cause, i.e. if she had viral, fungal or bacterial infection.  They did x-rays, CT scans, tested stool samples and respiratory samples, etc.  The only thing that came back positive was the enterovirus which we knew she had from last week.  Needless to say, she did not get her 4 hour pass on Sunday.  Today, Tuesday, she finally is feeling better! No fever last night, no vomiting, she’s eating some and she went to PT today and did 2 miles on the bike.  

The attending just came in and told her she is cleared to get her 4 hour pass tomorrow! YAY!! I know the change of scenery will do her good.  We are very limited on where she can go.  So, she will be heading back to out Airbnb and maybe we can even time it where she can have dinner at home.

Journal entry by Leslie Cavanaugh

Day +22

FREEDOM!!!!!  After 31 days, Alyssa walked outside for the first time.  And it couldn’t have happened on a better day...it was sunny and 70 when we walked out of here.  Granted, it’s not like we could grab dinner and get our nails done BUT it still felt great getting her out of the hospital. We just went back to our Airbnb. I made her a gourmet meal of Red Baron Thin Crust Cheese Pizza (her request 🤷🏻‍♀️). She laid on the couch, watched some TV, and then.....took a nap lol. God love her.  She was just worn out.  But, it’s a start and she was already asking the nurse about getting a pass for tomorrow as well.  The nurse explained, they are usually happy to give them out as long as she is feeling good, fever-free, and compliant with the rules.  So, we’ll see how tomorrow goes.  Today was a good day.

Journal entry by Leslie Cavanaugh

Day +27

Alyssa had a lot going on today.  Eric’s “re-engineered” T cells were injected into her bloodstream to help avoid several viral infections that can be very serious for BMT patients.  These cells were filtered out of his donated stem cells 5 weeks ago and underwent a process in a lab where they are now trained to look for and fight infections in Alyssa. Sounds like science fiction stuff, I know.  She also had her first post-transplant bone marrow biopsy, and traded out her central line for a port.  She’s really happy to get rid of her central line...this thing was implanted into the middle of her chest, with 2 tubes coming out of it, they probably dangled about 8-10 inches.  It was almost impossible for her to even shower because it can’t get wet.  The port is under her skin and will be much easier to manage. So with all these procedures out of the way, she is now ready for DISCHARGE!!! Tomorrow is the day. It will be 36 days total that she’s been in the hospital.  The last 5 days have gone by fairly quickly.  She’s had a 4 hour pass each day which is really helping to ease the move from hospital to home.  We won’t get discharge instructions until tomorrow so, not really sure what to expect. Assuming she’s going to be closely monitored for the first few weeks and very limited at first as far as being in public places.  

As crazy as it sounds, the 5 weeks went by fast (easy for me to say, right?) I think after the first couple weeks, the days just started running together.  I’m so ready for the weather to start warming up.  Our Airbnb does have some outdoor space, so that will be nice to have.  We are looking at approximately 2 more months in Cincinnati before we can get back to HOME.  Let’s hope that passes just as quickly.

Journal entry by Leslie Cavanaugh

Day +28

Minor setback...Alyssa will not be discharged today.  She is having a lot of post-operative pain from her port placement yesterday.  The IV dilaudid is not helping that much, and to go home, she has to be on an oral dose (which is less effective than IV). It was totally her call on whether or not to move to oral dose and she just decided she didn’t want to leave the hospital while she is in this much pain.  I totally agree.  The good news is, post-op pain is on a fairly predictable timetable and she should feel a lot better in 24 hours.  So, we can knockout all the discharge stuff today (consults with pharmacy, home health, PT, etc) and then tomorrow when she’s ready to go, we can just leave.  Stay tuned. 

Journal entry by Leslie Cavanaugh

Day +30

...AND she was DISCHARGED yesterday!! Her morning started a bit rough with some nausea and vomiting (most likely due to taking a bunch of pills on an empty stomach). Dr. Nelson (her main BMT doc) came by around noon to let us know biopsy results came back negative for any cancer cells and she was free to go anytime.  It definitely helped that we got a lot of things for discharge done the day before. So within an hour or so, we were out the door!  When someone leaves the BMT floor, it’s a big deal (I met parents that have already been there for months, and will be there for many more months) So a discharge is definitely cause for celebration.  They all line the hall, with goofy hats and balloons, singing and Alyssa was wheeled down the hall, and RANG THAT BELL.  She has to be extremely vigilant for at least the next 6 months regarding infections.  While her WBC is high enough, her body is not producing T cells which are needed to fight mainly viral infections. (She was infused on Monday with some of Eric’s T cells, which will provide her with some protection). They just told her to use common sense and avoid crowds and of course, close contact with anybody that is sick.  As of right now, she goes back for appointments/labs on Tuesdays and Fridays.  She will have another biopsy at Day +100.  After she’s released to go back to Louisville, her follow up appointments will be labs maybe every 3-4 months and another biopsy at the 1 year mark from her BMT.  

That’s the easy part.  The hard part is getting her strength and stamina back.  This is something new for her.  Pretty much through the 4 rounds of chemo, she never really felt bad.  She definitely had some bad days, but those were few and far between.  And she might have felt fatigued.  But this is something different.  First off, she lost all her hair.  And as cancer patients say, “now people know I’m sick”. She can walk a few hundred yards, slowly, but may also need a minute to catch her breath. Her favorite thing to do, cook, requires that she pull a chair up because she can’t stand for more than a minute or two. She can be talking to you one minute, then drift off to sleep (well maybe that part’s not so different) I want to remember where she’s at right now because if I know Alyssa, there’s going to be a remarkable change before too long. She’s already talking about working with her wonderful trainer back in Bowling Green, once she feels up to it.  The fact that this kid did 2 miles on a bike 14 days after transplant tells you something about her determination.  Her journey back will be one to watch, for sure.

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

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 +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

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....
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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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