Journal

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 +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 +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 +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 +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 +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 +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 +12
....And we have engraftment!  4th consecutive day of positive cell growth.  ANC is at 380! (48 hours ago it was at 30) Her main BMT doctor stopped by late Friday afternoon and predicted she would be at 500 by Monday.  We looked at him like he was crazy, but I guess he knows what he’s doing because 500 by tomorrow seems pretty likely.  The doctors are happy with everything they are seeing.  She did catch a virus (Enterovirus) which is causing some GI issues.  It’s a very common virus, nothing they can do to treat it and it’ll just have to run its course. They only other thing that’s bugging her, is she’s having some type of allergic reaction to something...very itchy skin.  She’s going through tubes of hydrocortisone cream to try to help.  They really don’t want to put her on an oral steroid at this point. They’re going to try another antihistamine to see if that will help.

They have already started reducing the nutrition through the IV, and will continue with that.  She actually asked Eric to get her some fried rice last night.  That’s the first time she’s asked for food in over a week.  Granted, she only had a few bites (taste buds are ALL screwed up) but hey, it’s a start.  Pain from mucositis is most definitely improved and they are continuing to wean her off pain meds as well.

All in all, a really great weekend.  Everything is going just like they hoped and I can only pray that this will continue.  We got moved into our rental and it feels great to spread out a bit.  It’s a very charming older home and perfect size for what we need.  I even cooked dinner for the first time in a month.  Felt wonderful eating something besides takeout and hospital food.

Journal entry by Leslie Cavanaugh

Day +10:
Things are going as well as can be expected with Alyssa.  The big news is, she does have some white blood cells coming in!!  This is the first sign that “something’s cooking in there”. It is still early, and they could drop BUT she’s had cell counts for 2 days in a row now.  They also look at her ANC (absolute neutrophil count).  That is another way of measuring neutrophils, which are a type of white blood cell.  Normal ANC is above 1500.  A “safe” number is above 500.  Alyssa’s was 60 yesterday, it was only 30 today.  But at least there was a count...she had been at zero since transplant day on February 19th. Her ANC needs to be above 500 before she will be allowed to leave her room.  We’ve been told that once engraftment really takes hold, that number can jump significantly in just a matter of days.  

Alyssa has labs drawn every morning at 4am.  They are posted online in her My Chart account around 5:30.  So it’s the first thing I look at when I wake up.  We have all her lab reports before the doctors even do rounds, which is awesome.  The timing of rounds varies betweeen 8:30-11:30 every morning.  I would be going crazy if I had to wait that long to find out what her counts were.  So for last 2 mornings I’ve been arriving at the hospital with a huge smile on my face.  The doctors are a bit more poker faced...they don’t want to get too excited yet since it’s still early, but if I prod them enough, I can get them to admit, that yes, this is all good news.

Her throat pain is getting better, but she is still on her pain pump.  She will probably need that into next week.  She’s also had some GI issues that are causing her a lot of distress.  All normal side effects of the transplant, we are told.  They are going to slowly start weaning her off the TPN (IV nutrition). She’s able to swallow liquids and pills, but still doesn’t seem interested in actual food (have no idea what THAT must feel like). She’s awake more now during the day and her physical therapist that comes every day has been awesome about getting her up and doing something. It’s just hard when she is stuck in one small room.

On a side note, we are leaving the hotel today, which has been home for the last 19 days.  We get into our Airbnb this afternoon; it will be nice to be able to spread out a bit.  The house also has some outdoor space. I’m assuming at some point in the next 3 months, the sun will actually shine again and it will start to warm up.

One thing I have learned over the last few months, is not to get too excited about potential good news.  But, it’s hard NOT to be excited when you see the lab reports and for once her body is doing something it’s suppose to be doing to get her healthy.  Please continue with prayers and positive vibes, they are helping!

Journal entry by Leslie Cavanaugh

Day +4 
There’s really not much going on right now...her WBC is down to zero which it will remain at for awhile. She did finally have to say goodbye to her hair on Thursday night. It was literally falling out in clumps after the radiation and chemo.  She was miraculously able to keep her hair after 4 previous rounds of treatment, but this dose of chemo was extremely high, and then add on radiation...as Dr. Nelson told her, he’s never had a patient keep their hair going through BMT.  So, no shock she lost it and of course she took it all in stride.  

The mucositis has taken its hold on her gut, mouth and throat.  Think of the worst strep throat pain you’ve ever had, and then multiply it by 10.  She’s on a continuous pain pump that she can control, but each day they come in to adjust the dose higher.  It’s becoming impossible for her to eat, so they are going to put her on IV nutrition for now until this clears up, probably when her cells come in.  She spends most of the day sleeping, which is good.  When she is awake, she is coherent and watches an episode or 2 of Grays Anatomy before drifting off again.  This will pretty much be her pattern for next 2 weeks.

Eric and I are adjusting to this schedule as well.  The days are all starting to run together and I guess it’s a blessing the weather has been so crappy.  The boys are on their way up today, so I know Alyssa will be happy to see them. 

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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