Journal

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

So, I haven’t posted lately because, thank God, it’s been an uneventful last 2 weeks. No hospitalizations, no new infections, everything finally going exactly how it’s suppose to.  Alyssa has now completed 2 of the 4 weeks of chemo for this round.  She will have 2 more days of chemo(Dec. 3 and 10). The bone marrow biopsy is on the calendar for Dec.13, but that will depend on her numbers.  The biopsy results will determine if she has an additional month of chemo, or if they will start scheduling her bone marrow transplant for after the holidays. We will know more about if there is a confirmed donor once we get biopsy results.

Our Thanksgiving was quiet and relaxing.  It was nice having dinner with just the 5 of us.  We all went down to the lake on Friday and spent the remaining holiday weekend with our lake friends and family.

Alyssa’s morale, energy, appetite, etc have been great.  As soon as she finished chemo yesterday, she took off for Bowling Green.  I know she’s trying to get as much “funtime” in before she’s relegated to hospital/isolation for many weeks and months after her transplant. The transplant process will require 5 weeks in the hospital and then we have to be within close proximity of Cincinnati Children’s for at least 3 months afterwards.  I’m saving the stress of worrying about that part for later...my psyche can only handle so much at a time 😬

Journal entry by Leslie Cavanaugh

The week started out normal with labs on Monday.  Amazingly, her numbers had rebounded enough to keep her biopsy appointment on Tuesday at Cincinnati Children’s. Tuesday was an especially long day...6:30am hospital arrival for procedure, and then multiple appointments with oncology and the Bone Marrow Transplant (BMT) team. Alyssa at one point casually mentions she’s had a weird pain in her lower left hip/butt area, almost like a pulled muscle.  Dr. Norris orders an MRI before we were to leave and it turns out that she’s got some obscure infection in the muscle.  She said she’s never seen anything like it when there’s been no trauma to the area.  It was a serious enough infection to put her back in the hospital for IV antibiotics, even though she felt fine and did not have a fever.  She did at least allow us to get back to Louisville and go to Suburban hospital. Alyssa was discharged Friday and must continue the IV antibiotics at home for next 14 days. 

We also got results back from biopsy.  She is still not in complete remission, even though she’s very close and the change from the previous month was significant. So at this point the plan is to go on to Part 2 of the consolidation phase which is 4 more weeks of chemo. She will then get another biopsy.  If the numbers are where they are suppose to be, then the transplant will get scheduled for after the holidays.  If the numbers aren’t there, then they will try an additional 4 weeks of a new type of chemo drug.  Regardless of that result, the transplant will get scheduled. So, looking at either early January or mid/late February for the bone marrow transplant. The donor search for a 10/10 match continues (donors are screened on 10 different areas to provide the best possible match). Half of all transplants are done with less than a 10 out of 10 match.  Because of her age and race they are very confident they will get a good match.  PLEASE do not let this stop anyone from following through with getting registered!!! The need for donors for ALL ethnic groups is very much needed.  Even though you might not match with Alyssa, there is a possibility you can be the match for someone else!  We cannot say thank you enough for the response.  Preliminary numbers from the WKU donor drive stood at 609 people signing up.  UK athletics also did a drive this week and Purdue Volleyball (thank you Jessica Lucas😘) sponsored a drive as well, in conjunction with their big match tonight vs.Nebraska. 

Looking back, last month alone has certainly been a roller coaster ride.  What started out as a 2 1/2 year chemo plan has turned into maybe 4 months of chemo and a bone marrow transplant.  Not where we wanted to be, but the silver lining is that the transplant will give her the best chance for a cure.  She’s got a particularly nasty mutation of Leukemia and it’s going to take her every bit of fight she’s got to knock this SOB out.

Journal entry by Leslie Cavanaugh

This week started out pretty normal, unfortunately it did not end that way.  Alyssa’s WBC is getting close to zero, which leaves her unprotected against any kind of infection.  She had her last chemo day on Monday for Part.1 of the consolidation phase.  By that afternoon she started to feel very tired.  By Tuesday afternoon, she still hadn’t gotten out of bed.  A temp of 101 sent her to the hospital on Tuesday night.  After 48 hours of fluctuating temps and waves of nausea, she finally started to feel better on Thursday.  Dr. Maly suspects it was a viral infection that just had to run its course.  She was released from the hospital yesterday (Friday) and is feeling much better.  She is going to have to be extremely careful while her WBC is this low.  Dr. Maly feels like her counts should start rebounding over the next week.  I’m encouraging anyone that has any kind of contact with Alyssa, to please get a flu shot. Every bit of protection helps her. (And you should get one anyway, for your own benefit 😬)

Her bone marrow biopsy that had been re-scheduled for Tuesday might need to get pushed back later in the week.  We won’t know for sure until she gets labs done on Monday.  Those results will determine next steps, but in all likelihood she will move on to Part 2 of the consolidation phase, which is an exact repeat of Part 1.  

The response to her her search for a bone marrow donor has been amazing and inspiring.  So many people, many complete strangers, have reached out to say they have registered.  PLEASE...if you signed up and received your kit, make sure you follow through and mail it back.  It doesn’t do anyone any good if it’s still sitting on your kitchen counter.  To start the process text CURE154 to 61474.  

Keep the prayers and well wishes coming.  She needs them!

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Journal entry by Leslie Cavanaugh

I wanted to update everyone on the WKU donor drive from this weekend.  In just 4 days they had 413 people register!!  Kits should be arriving in the mail this week for anyone that registered.  I’m praying that folks follow through and mail back their swab kit. For anyone that would like to get on the registry (target age group 18-44) please text Cure154 to 61474. The process takes 5 minutes and a kit is mailed out within 3-5 days.

On Monday, Alyssa finished up her last day of chemo for this round.  Her WBC is extremely low right now, which is a good thing.  It means that all that chemo over the last 2 months is doing its job.  Her bone marrow biopsy that was scheduled for this Thursday has been moved to next Tuesday.  They don’t like to do any kind of invasive procedure when the WBC is that low.  They are hoping that number will rebound somewhat over these next 7 days.  Alyssa is still feeling good, but is VERY tired (a result of low WBC). Also, 4 days of going to WKU basketball and volleyball games has taken its toll.  We are cautiously optimistic that she is on the right track for remission.  The next step is finding her donor.  PLEASE, to anyone that asks about her, tell them about getting on the registry! We’ve had a lot of people saying they would help with a donor drive here in Louisville...if anyone has ideas on the best way to reach the most (young) people, please reach out to me.  The contact person at BeTheMatch will help with coordinating things.  After attending the events at WKU, we have a much better sense on how to make this work.

Again, thank you everyone for your prayers. And please promote the bone marrow registry every chance you get! If you have questions about the bone marrow donor process, most of your questions can be answered at BeTheMatch.org. In the majority of cases, donating is a simple as giving blood.  We won’t know what is required of Alyssa’s donor until we get right down to the process of scheduling the transplant. If given the chance to save someone’s life, I believe in my heart, that most people would do what it takes.

Here’s Travis Hudson (WKU head volleyball coach) talking about registering:

https://youtu.be/kYvxOAww0iM


Journal entry by Leslie Cavanaugh

The WKU athletic department is partnering with BeTheMatch.org and holding a bone marrow donor drive this weekend.  The drive is being publicized at the women’s basketball game (Nov.1) the volleyball games (Nov.2 and 4) and the men’s basketball game (Nov.3).  All events are at WKU, Diddle Arena in Bowling Green, Ky.  See the poster in gallery pictures.

Things are done a little differently now.  Instead of being swabbed at an event, you now register online and a kit is mailed to you within 3-7 days.  You then swab the inside of your cheek and mail back in the postage paid envelope.  The target age group is 18-44.  To be honest, I did have reservations about the follow through on this.  BeTheMatch assures me that the response and follow through are high, especially when the donor drive is tied to an individual.  One thing I do need to state...you cannot specify that you are only registering for a certain person.  If you happen to match, you are given basic information about the person you are helping (age, sex, disease etc). I am praying that people genuinely care enough, that if they matched with anyone, that they would follow through, considering it could save someone’s life.

To start the registration process, Text Cure154 to 61474 on your smartphone. The good part is, if you can’t attend an event, you can still register. 

Alyssa had a pretty easy week this week, with chemo on Monday only.  She is still feeling really good.  And of course, is getting ready to head down to WKU for all the events this weekend.  Chemo again the following Monday only and then off to Cincinnati on Nov.8 for a bone marrow biopsy. 

PLEASE help spread the word on getting people registered.  It only takes one person...

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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