Journal

Journal entry by Leslie Cavanaugh

Alyssa started what is called “consolidation” phase of chemo.  She started on Monday by getting four different types of chemo...IT (spinal), IV, an injection in her stomach and an oral chemo pill.  And as usual, she finished the week like the warrior she is...no nausea, feeling good and headed to WKU on Thursday for a long weekend.  I’m honestly in awe of her.  She hasn’t complained once and has really only had a handful of bad days, but even then it was mostly just fatigue.  Her hair is even hanging on...6 weeks and she still has most of it.  She is noticing that it’s thinning out, but it’s really amazing that she still has any of it at this point.  

The big question regarding the sibling donor match is still unknown.  We should hopefully know by early next week. PLEASE pray for this!!

We are kind of settling into a routine with Hope (check out new pics). She has certainly proven to be a welcome distraction for Alyssa.  She’s a pretty sweet girl and she will start obedience training next week.

I also want to personally thank everyone who has reached out to her (us) with texts, emails, cards, food and care packages.  Alyssa has been overwhelmed by the thoughtfulness of not only family and friends, but total strangers that have heard her story and just wanted her to know she is in their prayers.  The one thing I have come to know, that throughout this awful shitty thing that has happened, is that people are genuinely good.   And that hasn’t always been an easy thing to say, especially in the past year or two where it seems people are always at each other’s throats.

Journal entry by Leslie Cavanaugh

This week has been a tough one. We met with Dr. Maly on Wednesday to get the results from the biopsy.  Unfortunately, the numbers were not where they needed to be.  He recommended another 2 weeks of the the induction chemo drugs and then repeat the biopsy. Yesterday (Thursday), we had our consultation with the docs at Cincinnati Children’s Hospital. (They are ranked as the #1 pediatric cancer hospital in the country). What we thought was going to be a brief visit, and an agreement to move forward with Dr. Maly’s suggestion, turned into anything but.  We were there for over 5 hours and met with a full team of doctors, nurses, social workers, case managers, fertility experts, etc.  There are 2 factors that have put Alyssa into a high-risk category...one is a “marker” that is present in her cancer cells and the other is now her failure to be in full remission after induction.  Their recommendation is to move forward with the Consolidation phase, which is several new chemo drugs that haven’t been used previously.  The thinking is that maybe exposure to a new drug will move her numbers in the right direction.  They are also recommending a bone marrow transplant at some point soon.

As of now, we are going to follow the recommendations from Children’s. They have more expertise with this type of cancer and the pediatric protocols.  Dr. Maly is onboard with everything they are wanting to do, and will accommodate the lab work and chemo here in Louisville.  It is very comforting to have 2 very good cancer centers working together to get Alyssa better. 

The plan is to start the new chemo schedule on Monday.  That will last for 4 weeks.  We will then travel to Cincinnati for the bone marrow biopsy.  Once her numbers are where they should be, and she has a bone marrow donor, we will move forward with getting the transplant scheduled. This will be done up in Cincinnati. Her 2 big brothers, Taylor and Ben are being screened as potential donors.  We are praying hard that one of them is a match. If not, then she will move to try and find a match through the national registry.  Several of you have already asked about getting screened.  At some point, we would like to host an event where we can swab and register potential healthy, young donors.

Alyssa has felt pretty lousy all week...tired, sore, achy, swollen etc.  She was told that these are all symptoms stemming from coming off the steroid. The good news is they should only last a week or so and today she is already starting to feel better.  Jared arrived just a couple of hours ago for the weekend so, of course, that put her in a great mood.

Please continue with the prayers.  Every prayer and positive wish helps her.

Journal entry by Leslie Cavanaugh

Alyssa’s week went pretty much according to schedule.  Numbers were pretty good all week, but she did end up getting platelets on Wednesday in preparation for IT chemo and bone marrow biopsy on Friday.  Unfortunately late Friday she started experiencing some type of allergic reaction to one of her meds.  By 5am Saturday morning she was in the ER with excruciating pain in her knees, swollen neck and face.  She was admitted to the hospital and given high dose pain meds, benedryl, and steroids to counteract the reaction.  By Sunday morning she was much improved and was allowed to go home.  Unfortunately, bad timing because she had to miss the “Light the Night” walk Saturday evening. Thank you to everyone who donated, she raised almost $1500 which is great since we really didn’t advertise it much.  Hopefully, next year’s walk will go smoother.

No chemo this week.  She has finished her induction phase and we are waiting to get the results of her biopsy.  She needs lots of prayers...the results will determine the next phase of her treatment, or whether she will need to stay in the induction phase another month.  Our appointment is on Wednesday. She is going to Cincinnati Children’s Hospital on Thursday for a consult/second opinion.  We have been very happy with the care she has received from Dr. Maly and Norton’s, but there’s no downside into getting a second set of eyes on her.  

So, please everyone...send your prayers and positive thoughts that she gets a good report on Wednesday. 

Journal entry by Leslie Cavanaugh

Alyssa will be sponsoring a team for the Leukemia & Lymphoma Society’s annual “LIGHT THE NIGHT” event this Saturday, October 6 at 5pm at Louisville Slugger Field. The name of her team is TEAM FEARLYSS. All information is included in the link below.  If you would like to join us, please register on the website, under her team name.  This is a bit last minute, well, because, we just found out she has leukemia and just found out about this walk.  (We'll be better organized next year, with T-shirt’s etc) Should have nice weather, so hoping you can join us!

https://www.lightthenight.org/

Journal entry by Leslie Cavanaugh

Blood work on Tuesday showed that Alyssa’s hemoglobin (the cells that carry the oxygen in the blood) were getting low.  Not surprising news since she’s really been more tired than usual lately.  A blood transfusion was scheduled for Thursday, to be done after her IV chemo.  So, Thursday ended up being about a 9 hour day at the office/infusion center.  She got 2 units of blood which should definitely help with her energy level.  Friday is intrathecal chemo day and Dr. Maly ordered a blood patch be done after the procedure as she was having issues with lingering headaches.  She also needed a liter of fluids because she was low on electrolytes.  Long story short, she hopefully got a lot of good stuff pumped into her, to counteract some of the side effects of the chemo.  Four rounds are now in the books.  Alyssa is rewarding herself with a short road trip to WKU to see Jared and attend the alumni volleyball match on Sunday.

Her happiest news is that she found “Hope”...her new pitbull mix puppy.  Hope was rescued on Wednesday from The Animal House shelter.  She is a beautiful 10 month old, 50 pound pile of love.  She is very well behaved for her age and unbelievably, hardly reacted to the 4 cats in the house.  We are still working on her manners and her social skills.  Formal training will begin with a certified trainer next month.  Alyssa is hoping to get her registered as an emotional support dog so that she can take her wherever she goes.  We have all fallen for her and even Eric can be seen giving her some loving pats and attention.

Journal entry by Leslie Cavanaugh

Our weekly schedule for her induction phase is blood work on Tuesdays, IV chemo Thursdays and blood transfusion or platelets if needed, and intrathecal (spinal) chemo on Fridays.  Our week started out great on Tuesday as Alyssa’s numbers were stable which meant no transfusions or platelets this week! She followed up her doctors appointment with a facial at the Norton’s Cancer Resource Center.  This place is fantastic...she AND her caregiver get 12 free treatments...anything from acupuncture, facials, or massage. Thursday’s chemo and Friday’s lumbar puncture went off without a hitch and by Friday afternoon we were heading south on I65 towards WKU. Alyssa got to be there as Travis Hudson celebrated his 600th career win and the team showed off their new warmup jerseys (check out photo gallery). I know Alyssa means it when she’s says this place is her second home. A little bump in the road on Saturday as she woke up with more blood than usual around her picc line. (Eric and I left her in Bowling Green and we were staying the weekend at the lake, an hour away) Quick text to Dr. Maly and a drive to the ER got everything taken care of. Thank you so much Cindy Hudson for taking her and waiting with her.  It helps to know that she has such a strong support system when Eric and I are not there.  

The dog/puppy search continues.  We had a home visit on Thursday with a Great Dane/Pit mix puppy  🤦🏼‍♀️ Alyssa continues to look for the perfect yin to her yang.

Journal entry by Leslie Cavanaugh

Alyssa had a great weekend, with Jared in town and lots of family time.  She’s still feeling pretty good, just gets tired easily, which is pretty normal. We are getting into a routine with her meds, flushing her picc line and Dr appts.  

Alyssa wanted to do something fun with her hair before she loses it, and a very sweet hairdresser agreed (gratis) to color her hair silver. (Shoutout to Kaitlyn Hubert) It turned out great! Check out the new pics in the gallery.

Blood work appointment was Tuesday and everything looks great...no transfusion this week. Chemo will be on Thursday and Friday.

Journal entry by Leslie Cavanaugh

FINALLY!! Very long day...and it looked for awhile she might not make it home today.  She was scheduled to get 2 units of platelets at 12am and 2am. Apparently there was some kind of emergency at the hospital and there were no platelets available for Alyssa. More were ordered and finally arrived at 3am for the first unit, second unit was given at 5am. The platelets were necessary for here lumbar puncture scheduled for this morning.  Her number has to be above 50. At 10am we were informed her number, at 52, was not high enough for the radiologist to give puncture, she would need more platelets. This was going to delay the whole discharge as she has to stay flat and in hospital for a minimum of 2 hours following the spinal tap. Dr. Maly to the rescue...he insisted she get puncture first and then given the platelets while she was doing her recovery.  So after a very long night and day, Alyssa officially was discharged around 6:30pm.  She is really under very little restriction right now...no mask, or limitations on where and what she can do.  In fact, we just got back from eating Mexican. She had 9 prescriptions filled at the pharmacy...for pain, nausea, GERD, infection etc.  so that was a bit of a reality check.  She may have to do more platelets on Sunday, but that can be done outpatient. 

The schedule for the rest of the month is blood work on Tuesday, IV chemo and platelets on Thursday and intrathecal chemo in Fridays, all outpatient. She says she feels good and no hair loss yet.  We are feeling incredibly blessed by how well she has responded so far.  Thank you again everyone for your thoughts, prayers and words of encouragement. 

Journal entry by Leslie Cavanaugh

Alyssa’s numbers are holding steady, no blood transfusion this week.  We’ve had some people ask about donating blood for Alyssa...there is something called a “Directed Donation” which we were in the process of getting this setup through the Red Cross when the lady tells me that my insurance may bill the patient for this.... ahhh what?? Turns out Red Cross adds a type of surcharge for directed donations that insurance companies may or may not cover (vs. just a regular anonymous donation) seems odd to me and I couldn’t get any kind of assurance from Humana that they would cover.  So...bottom line, just donate! There is always a need for blood. 

Alyssa had her second round of IV chemo today and celebrated by having a bowl of nachos and a milk shake. Her appetite has been pretty good and isn’t yet experiencing any kind of weird taste issues.  She will get platelets tonight to prepare for her intrathecal (spinal tap, lumbar puncture) chemo tomorrow morning.  The plan is to be home by late tomorrow afternoon.

Thank you everyone who has sent cards, texts, helpful hints, and prayers. We are all very appreciative. 

Journal entry by Leslie Cavanaugh

Compared to the fire drill that was going in the first 5 days, the last 2 days have been a nice change of pace.  Alyssa has continued to respond well to the chemo. WBC is around 3700.  Her hemoglobin is hovering around 7.2. (Her normal number before she got sick, was probably around 14, so her blood is carrying about half the oxygen which can cause her to be tired and winded). She will more than likely be getting a blood transfusion and platelets tomorrow as the doctor does not want to get it below 7. This is normal and expected for patients receiving chemo. Her appetite is good and she has thoroughly enjoyed the “restaurant” dinners that friends and family have been bringing every night.  It looks like Friday will be her discharge day, and after 10 days in the hospital, I know she is looking forward to actually sleeping and being in her own bed.  

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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