Journal

Journal entry by Leslie Cavanaugh

I’m writing this entry in a waiting room at Cincinnati Children’s hospital and medical center, which going forward I will refer to it as CCHMC.  We arrived around 9am to start the 2 days of pre-transplant testing for both Eric and Alyssa.  Eric’s part was fairly easy...medical history and then donating about 5 gallons of blood for testing.  Alyssa also had to donate generously to the blood pool, then Echocardiogram, EKG, pulmonary function tests, a six minute walk, and now we are waiting on her to do a CT scan.  Tomorrow is kidney function tests and measuring her for head and body for the radiation she will start receiving next Wednesday. Being the rock star she is, I have no doubt she is one of the healthiest sick kids they have seen in awhile. She honestly hasn’t looked or felt this good in a long time.  Unfortunately, this bone marrow transplant (BMT) is no walk in the park and I both dread and celebrate what this procedure will mean for her.  

I started thinking about time in increments of 2 weeks ...the 2 weeks before she was diagnosed and we were running around Europe without a care in the world.  The 2 weeks spent in the hospital after her cancer diagnosis. The 2 weeks where we had to wait for her numbers to get high enough for a biopsy.  The 2 weeks from now when she will start the transplant process.  The 2 weeks from “Day Zero” (when she receives her stem cells from Eric) that we will wait for engraftment, telling us that she is on her way to recovery.  If I just break it down in days or weeks at a time, the transplant becomes more manageable.

Looking ahead, months from now, when this transplant is over with and I envision my beautiful sweet daughter healthy again...I want to see that time in increments of years and years, and her being able to resume the life she was meant to have.

Journal entry by Leslie Cavanaugh

After 3 rounds of chemo and 1 round of immunotherapy, we FINALLY heard the word we’ve been waiting for.  ALYSSA IS IN REMISSION! Things will move pretty quickly at this point.  She (and Eric) have pre-transplant testing this Thursday and Friday.  She will start the conditioning phase for her transplant around February 11.  This entails 5-7 days of very high dose chemo and total body radiation.  The goal is to completely destroy the immune system, make absolutely sure there’s no trace of the cancer and prepare her body for her new stem cells.  

Thank you everyone for your prayers, and keep them coming. They are working. 

Journal entry by Leslie Cavanaugh

It appears that many of you may have heard by now that Alyssa has found a donor for her bone marrow transplant. This journal entry may get more technical than you care to read about and I can guarantee that I will not get all the facts correct, but here’s my best shot...Yesterday we had a conference call with her transplant doctor, Dr. Nelson, where he told us about her donor.  To recap, back in October, our entire family was DNA tested.  The obvious ideal donor would have been one of her 2 brothers.  We found out rather quickly that neither one of them was a full match. She was immediately placed on the national registry to find an unrelated donor.  Multiple donor drives, primarily at WKU, were held for her, to increase the odds of her finding a perfect match.  A perfect match is when the donor matches on all 10 of the human leukocyte antigens (HLAs) of the recipient.  The odds of finding a 10/10 are DNA specific, and certain ethnicities have a higher probability of finding a perfect match.  Caucasians of European descent have the highest probability of a match simply because there are more people with that ethnic background that have registered. Shortly after Alyssa got on the registry we were told they had found at least 2 possible donors, both of which were 9/10 matches.  Not perfect, but according to her doctor, close enough to move forward with the transplant plans.  Before going to transplant, they ideally want Alyssa in remission.  This has proven to be a bit tougher than normal in her case.  While her cancer was responsive to 3 rounds of chemo, it was still not in remission.  On December 26th, she started a 28 day round of immunotherapy. She will get a bone marrow biopsy on January 24th. Prayers that this drug will finally put her in remission.  If she’s not, they will repeat another 28 days on the drug.  Because Alyssa’s cancer has been hard to treat, they are looking at every option to give her the best odds of a cure through the transplant.  There have been a number of recent studies, especially one that just was published last month, that show a related (family member) “haplo” (meaning only a half match) is a better option than a non-matched, unrelated donor.  In fact, the results from this study show that the outcome was just as good with a Haplo donor as it was with a 10/10 match.  So, since she still doesn’t have a 10/10 match, and her transplant could possibly happen in the next 3 weeks, they need to move forward with the best option they have.  Alyssa’s “Haplo” match isn’t one of her brothers...it’s her dad.  And if you were not expecting to read that, well, needless to say, we weren’t too prepared either.  In some weird, DNA themed plot twist, her dad is actually an 8/10 match for her.  In theory this is obviously even better than a 5/10 match (which is what would happen in probably 99% of a non-matched family member).  When I asked how a parent could be more than a 50% match... the answer was “you and Eric have some of the same typing.  So each of you gave her half, but some of the ones you gave her, Eric also has”.   The first concern we had about the donation is Eric’s age. (He’s 57 next month). Dr. Nelson assured us that they can “filter” his stem cells and that it won’t be an issue. (You actually stay on the registry until you turn 60).  So Eric will join Alyssa in 2 weeks up at Cincinnati Children’s to undergo pre-transplant testing. I can’t tell you why we didn’t know earlier about him being an 8/10 match.  All I know now is that her entire transplant team agrees that this is the best route to go.  I can’t speak for Eric, but while I know he is thrilled to have the honor of being her donor, he’s nervous about his part if the outcome is anything less than a cure.  

 

Honestly, when I think about the last 5 months, it only makes sense that it would end up this way.  For those of you that personally know Alyssa and Eric, you must know how alike they are. Their competitiveness, athleticism, the “I’m not here to talk about my feelings” ...they are literally the same person.  So, we hopefully move forward with this transplant next month and pray that these doctors know what they are doing. I’ve never felt more out of control, but yet I have to trust that God has this one.

Journal entry by Leslie Cavanaugh

Things have been pretty quiet since our New Years Eve emergency room run.  Alyssa had a minor incident about 4 days ago when she felt some numbness and then got a really bad headache.  She was able to shut her pump off for about 30 minutes, enough time for the symptoms to subside. The deal with this drug is, that you can’t “dial down” the dose on the home pump and she can’t be off the medicine for more than an hour or two, or she would have to start the whole 28 day round again.  When Dr. Maly suggested doing just that on Thursday, it was met with a rousing “OH HELL NO”. She was 16 days in at that point.  My only worry now is that she will try and downplay any possible future incidents, not wanting to interrupt the 28 day regime.  Hopefully, that was the last of the side effects. Her energy and appetite have been good.  She only has to go in once a week to the office for lab work.  The one benefit of this drug (besides hopefully getting her into remission) is that it doesn’t affect her blood counts, so WBC, hemoglobin, and platelets have all been great.

We are both starting to go a bit stir crazy in the house.  It helps to have at least one errand to run, or find some reason to get out.  Only 9 days left on the Blincyto and then I have a feeling things are going to start moving quickly with the transplant. We have a conference call scheduled tomorrow with her transplant team to talk about her donor.  I have no idea what that means exactly...we’ve been given an early indication that a donor was found but so far they have been very tight-lipped with any other information. The bone marrow donor drives associated with Alyssa at WKU, UK, and Purdue registered almost 700 new people, a pretty impressive number.  If a donor has been found for Alyssa, I’m praying that folks will still return their kits, especially for potential minority donors, which are desperately needed.

Journal entry by Leslie Cavanaugh

10 days in now on new drug and I finally think we are over the hump.  It was a very rough start...5 days in the hospital and an ER visit just 9 hours after discharge will keep you on your toes.  We seem to be managing the IV bag change easily (mainly because Alyssa does all the work and I just “plug in” the medicine) The pump for this is a little bigger than anticipated and she carries it around in a shoulder bag that she has affectionately named “Stan Jr”, as he goes everywhere with her. (The original Stan, short for stand, was her IV pole bag that she pushed everywhere in the hospital for 2 weeks when she first got diagnosed).  I’m honestly not sure how many 22 year olds would still be making jokes about the situation she is in.  She has faced everything this disease has thrown at her, and still kept her sense of humor and fighting spirit.  Alyssa continues to do normal things, like shopping, getting her nails done, and a night out with her girlfriends. She knows her days of freedom, before this transplant, are dwindling and her intentions are to take full advantage of her time outside the hospital while she can.

She will finish this round of treatment on January 22.  Biopsy in Cincinnati is scheduled for January 24.  I have a feeling her pre-transplant testing will start the week of January 28 (not scheduled as of yet). That will entail multiple tests over 2 days to make sure kidneys, liver, lungs, etc are working great and can handle the stress of the transplant. If it’s one thing we've heard over and over, it’s that Alyssa is one of the healthiest patients they’ve seen.  So that is definitely going to be to her benefit as she continues this process to get better.

On another note, we found “temporary housing” for Hope.  I know it sounds silly, but I was really stressing out about what we were going to do with this dog while we were in Cincinnati.  My brother Chris and sister-in-law Terri have very graciously offered to take Hope in.  They already have a pit-mix rescue (Gary lol love that name), a large fenced backyard and the ability to love and care for another dog.  Once again, my circle of support has answered the call and taken something off my plate.  

And speaking of support...I had one of the oddest interactions with someone last night.  I say odd only because I don’t know a better word to use when a stranger randomly pops into your evening and for the first time, in a long time, I felt a sense of peace. Alyssa has her IV medicine delivered to the house, and the delivery person was coming by last night to bring her the next several days worth of medicine.  This older (45-50ish) attractive woman came to the door.  I let her inside so she could set the box down and I could sign for the medicine.  She starts talking about how much she likes our neighborhood and that she once looked at moving out here, 10 years ago.  She continued that her life had taken a turn 3 years ago when she became the recipient of a heart transplant. No previous warning she was that sick, she had just ended up in the hospital ER with congestive heart failure and was told without a transplant she would die. It took 3 months to find a donor and during the procedure, she said she died/coded out 3 times on the operating table.  Since then, she says, she has this clarity about things and feels like she has seen heaven and lived because she still is needed here on earth for whatever reason.  She also went on about life being a series of “non-coincidences”...that random things happen all the time that don’t make sense now, but will later. After hearing her story, I told her that my daughter was recently diagnosed with leukemia and was getting a bone marrow transplant in the next month (no idea what possessed me to tell this to a total stranger).  Alyssa, who was sitting right inside the family room watching TV, was visible to this woman standing by our door.  She asked if she could meet her.  She introduces herself and starts to tell Alyssa that she senses things are going to be alright, that she will be OK and that this is maybe happening because Alyssa has a platform that she can use to help others down the road.  Believe me, the whole interaction was about as crazy as it sounds, but for some reason I start crying (which if you know me, is a rare occurrence) and I just felt, I don’t know...calm, relieved? Maybe I’m so desperate for someone/anyone to tell me this is going to be OK that I just hung on to every word she was saying?? Alyssa felt it too though and continued to talk to her for a few more minutes.  The whole interaction lasted probably less than 15 minutes.  Maybe the woman was a total kook, who knows? But I can’t help but wonder how this person ended up on MY front porch at night in a pouring rainstorm.  Maybe everything is a “non-coincidence” and maybe God just knew Alyssa and I both needed someone to tell us everything is going to be alright.

Journal entry by Leslie Cavanaugh

Well, the new drug (immunotherapy, not chemotherapy) really kicked her butt.  I don’t think any of her doctors saw this coming, based on her previous tolerance of chemotherapy.  Alyssa was admitted Wednesday afternoon and started the IV around 6pm.  By early the next morning, we knew something wasn’t right.  She was completely lethargic, nauseous, and feverish.  The IV drip needs to flow at a certain rate to deliver enough medicine (in this case 10ml). They started the drip at this rate but by Thursday morning had to back it down to 5. She spent the entire day Thursday asleep.  Friday she was much, much better.  Plan was made to discharge her the next day.  So, the IV was dialed back up. Saturday...another disastrous day.  Completely wiped out and nauseous again.  So....back down goes the IV flow.  Again, another day spent sleeping.  She started to rebound a bit around Saturday evening.  Plan was made for discharge on Sunday.  Saturday evening they dialed the flow back up...this time in very small increments. Sunday morning she was tolerating the IV at 8.  However, the decision was made (and rightly so) to keep her another day. By Sunday evening she was back up to 10. It’s now Monday and she been at 10ml for almost 16 hours.  She feels good, just very tired.  Her counts are good, and she feels good.  She is being discharged here shortly.  The home health agency should be up to her room soon to show us what needs to be done to manage this 24/7 pump on our own.  Our plan is to spend NYE at the lake.  She has Jared coming, along with Jess and Amara.  It will be a quiet dinner and hopefully she will start getting her energy back.  I think being out of the hospital will help her mood tremendously. She will be monitored weekly and of course Eric and I will be keeping a very close eye on her.

On a separate note, I did find an apartment in Cincinnati for post transplant living.  I ended up finding a place on Airbnb that was reasonable, pet friendly, and the guy was willing to work with me on dates. THANK YOU everyone who reached out to me, trying to help me find a place.  Your concern is greatly appreciated.

I will sign off for now, and will hopefully have a positive and happy update in a few days.

Journal entry by Leslie Cavanaugh

The biopsy was finally done on Friday and unfortunately we didn’t get the news we wanted.  Alyssa is still not in remission.  The plan is to start her on a new chemo drug tomorrow. She will be in hospital for 2-3 days to start, just to make sure there’s no serious reactions.  Strictly precautionary, both her doctors think she will do fine, especially because they’ve basically thrown the kitchen sink at her and she’s done great.  Her big worry is to make sure she’s out in time for the WKU-Wisconsin basketball game on Saturday.  And then to be able to stay at the lake to celebrate New Years.  Small goals, and hopefully very doable.  This new drug is a 28 day continuous IV through her picc line.  They’re going to teach us how to change the medicine bags, but she will literally carry the medicine with her in a back pack. I have no clue what to expect, but I’m sure we’ll both be experts at this in no time.  Her transplant will be scheduled approx 7-14 days after finishing the chemo, so early-mid February. It seems like this bone marrow transplant has been this “far off” thing that will eventually happen, and now it’s becoming this very real thing.  They give us very little information about a bone marrow donor.  We’ve been told there are 2 potential donors and that both came back for additional blood work, which is always a good sign that they will follow through with the actual procedure. We still have to figure out the logistics of living in Cincinnati for 4+ months. Children’s hospital was not much help in assisting us with housing.  Hope Lodge closed up there and she’s too old for Ronald McDonald house.  I’ve had one good friend put me in touch with a property manager up there, but we havent actually talked yet.  I’m just going to put this out there...if you know of someone that might be able to help us, please let me know.  We are looking for a short term rental, furnished, 2 bed/1-2bath, that’s pet friendly. It needs to within 15-20 minutes of Cincinnati Children’s hospital. 

It’s Christmas morning and I’m sitting here alone on the couch with my coffee.  The dog is laying next to me and all 3 of my children are asleep upstairs.  We entertained Eric’s entire family last night (35 people!). It was a bit exhausting, but a lot of fun.  My kids stayed up late, and after everyone left, watched a movie together.  It’s kind of their tradition.  So I have a minute to reflect and I’ve realized I’m a pretty lucky person. I’ve got an incredible husband, 3 great kids, and a good life.  I’m positive that this whole cancer journey is going to end with Alyssa being cured after her transplant. We may not know for sure for a couple of years, but I do know I’m not in control of this.  I have learned that God has a plan, and I have to believe things are going to be okay.  I have learned we have the most incredible support system, and that people are genuinely good and caring. So Merry Christmas everyone! And thank you for being there for my daughter and our entire family.

Journal entry by Leslie Cavanaugh

Alyssa’s numbers were STILL too low when they did her labs on Monday. Biopsy now rescheduled for Friday.  If still too low when she gets labs done on Thursday, not really sure what the plan will be.

Alyssa is still feeling good...since the biopsy got rescheduled, she just now headed out the door, back down to WKU.  Jared has a ball game Wednesday in Nashville, so she’s heading there with Jess.  She even took Hope with her this time for the road trip. Dr. Maly was incredibly thoughtful and arranged to get her Thursday labs done in Bowling Green.  That way, if still low, she wont have to make a trip back to Louisville for nothing.

Fingers crossed that she finally gets this biopsy done on Friday.  I think she is more than ready to know what the game plan is going to be for next month.

Journal entry by Leslie Cavanaugh

So, as suspected, her numbers were too low this week for her biopsy.  I’m not really sure why Cincinnati Children’s scheduled it during her last chemo week.  We were in the exact position this time last month, with low numbers.  The biopsy has been rescheduled for Tuesday.  We typically get results in 24-48 hours.  If she’s in remission (note: remission is NOT the same as cured), then we will go ahead and start making arrangements for her bone marrow transplant to be done after the holidays.  If she’s not in remission, then the plan was one more month of chemo with a new/different drug and then transplant.  We will get an update on Tuesday regarding a donor match.  They really don’t give us a lot of information on that until it’s set in stone with a confirmed transplant date, etc.  We will also be meeting with some folks that can hopefully help us figure out some housing options during our time in Cincinnati. Alyssa will be in the hospital 30-40 days and then she has to be in Cincinnati for another 100 days.  She’s too old for us to stay in Ronald McDonald house (patients have to be under 21). There is something called Hope Lodge run by the American Cancer Society, which is the same concept (private bedroom but shared bathrooms, kitchen and living space) Because we are looking at a fairly long term stay, we will probably research our options for a short term apartment lease. Hopefully we can find something affordable that’s close to the hospital.  

Alyssa has continued to be her usual upbeat self.  Even with a low WBC, she was determined to get down to Bowling Green for the weekend.  She’s very good about taking her meds (10-12 pills a day), flushing her picc line and listening to her body when she’s tired.  I honestly don’t even worry anymore when she heads out the door for 3-4 days.  Her free time is going to be taken from her soon enough here with the transplant and moving to Cincinnati...I absolutely want her to be able to enjoy this time she has now to be with Jared and her college friends. 

Journal entry by Leslie Cavanaugh

Another uneventful week...Thank God! Alyssa had chemo only one day this week, but did need 2 units of blood on Wednesday.  Pretty impressive that she went almost 4 weeks this time since last transfusion. And despite her hemoglobin being pretty low, her energy level has been great.  She has gotten lots of Christmas shopping done and spends 1-2 nights a week with her girlfriends.  Jess came in town this weekend, which is always great and several of them headed out to Main Event.  (Note: original plan was to go to Flying Axes...for the uninformed it is a bar where the main form of entertainment is patrons throwing axes at a target about 20 feet away.  Seriously.  I thought her oncology nurse was going to lose it when Alyssa told her where she was going...Kim’s deadpan response was “Don’t cut yourself” especially important since she has almost zero platelets right now and would’ve probably bled out in 2 minutes if she did get cut.  I mean seriously...alcohol + axes + low platelets = a good idea???!!   Thank God they couldn’t get a reservation...bowling was a much safer choice) I’m all for her going out while she’s feeling good, but that one was totally stressing me out.

One last day of chemo on Monday and then hopefully to Cincinnati on Thursday for her biopsy.

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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