Journal

Journal entry by Leslie Cavanaugh

Day +116 
(...or almost 4 months.  I sound like one of those moms that says her 2 year old is 104 weeks)

So I think I FINALLY learned my lesson.  No more bragging on how well Alyssa is doing until after a sufficient amount of time has passed...like maybe a week.  For the umpteenth time after posting positive news, Alyssa (again) made a liar out of me.  I’m starting to take it personally at this point. We got home on May 31st. (See previous  post) Exactly 24 hours later, she starts to feel bad.  Really bad. Fever, headache, nauseous, body aches, etc.  By Sunday (June 2) we are in the ER in Louisville to see what’s up.  After numerous and prolonged testing, it’s decided...there’s nothing wrong as far as her lab work is concerned.  These symptoms continue daily for the whole week, but she does typically start to feel better by late afternoon.  By the following weekend (June 8-9) she has hit a wall.  Feels terrible, not eating, zero energy, and lays on the couch sleeping for DAYS at a time.  More lab work is scheduled for Tuesday. At this point, I’m insisting that regardless of lab results, she needs to be seen.  We head to Cincinnati on Wednesday. By this point, she looks and feels absolutely horrible.  Dr. Nelson takes one look, listens to her complaints and is about 99.9% sure her problem is related to her steroid wean.  Especially in light of the fact that every test under the sun was done on her and NOTHING came back (which was, at least, somewhat reassuring).  She’s given an IV dose of steroid at the office and then moved to the hospital for observation.  The plan is to put her back on a steroid (a different one this time) and start the weaning process all over again, and do it MUCH slower this time.  Alyssa has something called adrenal insufficiency.  It’s caused by her being on such a high dose steroid over a long period of time. And even though she feels like it was a long, slow taper to get off, apparently it was just too high of a dose and she came off before her body was able to make its own cortisol.  She received 3 IV steroid infusions while in the hospital and within 24 hours, she was like a new person. She was discharged Friday (yesterday) morning.  So the plan now is, back on steroid at what they call a stress dose for 1 week.  Then it will SLOWLY be weaned down to a maintenance dose.  She will be on a steroid for probably 6-9 months.  That about sent her through the roof when she heard that, as she was literally down to her last day of prednisone. Dr. Nelson has assured her that this steroid (hydrocortisone) and the maintenance dose she will be on, should not cause any of the symptoms like the prednisone did...mainly her chubby cheeks, mood swings, insatiable hunger, etc. If he’s lying, I’m pretty sure she will hunt him down and hurt him.  

So, we are back home now. And while I dare say she’s feeling better, I’m not about to say that she’s doing great. Nope, not going there again.  She’s fine (that should cover it). She goes back up to Cincy next Friday, and after that, she should be cleared from medical appointments for quite some time. Damnit, I did it again...”she will be cleared from medical appointments as long as she remains in good health”. There, fixed it.

Journal entry by Leslie Cavanaugh

5 months post-BMT...

Definitely been awhile since I last updated.  I feel confident enough now, that if I write something positive, she won’t immediately relapse into some awful illness or hospitalization tomorrow.  Not going to lie...that possibility is ALWAYS there, but it’s something we have learned to live with.

Alyssa had a routine follow-up appointment yesterday in Cincinnati. They have reduced her steroid which made her very happy.  Her chubby face is the one thing that really bothers her and she CANNOT wait till the day comes and she actually has a defined chin and normal size cheeks.  Dr. Nelson thinks in maybe 2-3 months the swelling should be gone.  She will most likely be on the steroid for another 6 months, but at a significantly lower dose. We were literally minutes from walking out to our car to leave when her nurse practitioner called with some news...the labs they had drawn just an hour earlier came back and her potassium level was “alarmingly” low.  Not knowing what that means exactly, we went back to the clinic where she was told she would need a bolus (an IV bag) of potassium.  She was ordered up to the Day Hospital, waited almost 2 hours for pharmacy to get the IV bag up there, the drip takes an hour, then there’s a flush, then a 30 minute wait to get a new potassium count....UGH...NOTHING IS EVER DONE QUICKLY.  So while we thought we’d be home by 1pm, turned into home at 6:30.  Oh well, at least it was nothing too serious and could easily be remedied.  So she will now add potassium to her daily pill popping, at least for now.  All of her other lab work looked good, and her virus counts all came back negative.  He’s going to stretch her appointments out to once a month.  She will return in 2 weeks to have her port removed, the last piece of hardware in her.  In the future, when she needs an IV infusion (and she will definitely need IVIG intermittently for the next several months), they will just do it through an IV pick in her arm. The IVIG is what boosts her immune system as her body is recovering from the BMT.

She has really felt good these past 4 weeks.  She has somewhat moved back to Bowling Green, but we still see her quite a bit at either the lake or when she comes in for doctors appointments.  She has started exercising daily by riding her bike or doing a very modified workout. She is being very good about her diet and trying her best to eat healthy.  I do worry about the boredom...she’s not cleared to work for a while.  Jared is busy with basketball and all her BG friends are working or in school.  So she’s got a lot of time on her hands. She’s pretty resourceful, so I’m sure she’ll figure out a routine that keeps her busy.

All in all, I’d say we are very blessed to be where she is today.  As time goes by, the worry becomes less, but of course, always lurking around a dark corner.  We have learned to take it a day at a time and to be happy and grateful for where she is now.  She’s cancer-free and in relatively good health, considering what her body has been through. She’s getting physically stronger everyday and mentally, I don’t know that there’s a tougher person out there. 

Again, thank you everyone who has reached out to not only Alyssa, but our family. We’ve been through a lot in the past year and I am quite positive that we could not have done it without our circle of support.

(On a different note, we discovered that Hope (her rescue Pitt) has torn her ACL and will need surgery.  The earliest we can get her in is August 9th and then there’s an 8 week recovery period that will require constant supervision (to keep her immobilized), physical therapy, etc.  Yes, I’m thinking the same thing...at some point we are going to get a break 😬)

Journal entry by Leslie Cavanaugh

Alyssa continues to make progress, but at times feels like 2 steps forward, 1 step back.

Last week she traveled to CCHMC for 2 procedures...an IVIG infusion (to boost immune system that’s routinely administered every couple months) and her port removal.  She was told a few days before all this that they would also like to add a bone marrow biopsy while she was under anesthesia. The reason being is that her blood counts (WBC, platelets, ANC, etc) have all been slowly declining the past 4 weeks.  They will normally see dips in her numbers, but they will almost always rebound in the next week or so.  We didn’t think too much of it until we got up to Cincinnati.  Dr. Nelson then proceeded to tell us that he was not going to do the port removal until we got results back from the biopsy. Ok...now I’m getting scared.  Then he just said the words out loud that I never wanted to hear. “You need to prepare yourself for the fact that your leukemia might have come back”. I honestly couldn’t believe he just said that and quietly start crying.  Alyssa, as usual, just looked at him and said, “well if it is back, then we have a plan, right?”  He said absolutely, there are lots of options still open.  My daughter has to be one of the strongest women I’ve ever known.  I know I’m biased, but her attitude just made me feel shameful for crying in front of her.   So, the biopsy was done on a Thursday and he said it would be 24 hours before he got the first preliminary report back.  As you can imagine, it was the longest 24 hours of my life.  Friday afternoon he calls to tell us that NO CANCER CELLS were present.  Thank you God!! They were going to run additional tests to see if they can pinpoint why her counts are dropping.  It turns out she tested positive for a virus, which along with her steroid could possibly be the cause of her low counts.  The virus is not a serious one, but it has been wrecking havoc with her GI system.  This virus would cause a stomach bug/diarrhea for a healthy person for maybe 3-5 days...for Alyssa, it may take 5-6 weeks to get it out of her system.  

Alyssa returned to Bowling Green right after her Cincinnati stay.  She had blood work done down there on Wednesday and her counts are all going back up again!!  So we may never really know what the cause was and Dr. Nelson tells us all the time that no 2 patients are ever the same as far as recovery.  He sees “trends” but everyone kinda does their own thing. She is to return to Cincinnati on August 8 for a follow-up appointment.  

We really didn’t tell anybody last week when all this was going on.  First, it happened so quickly that there just wasn’t an opportunity.  Second, I was SO afraid that if I even said it out loud, it would be true.  I’ve never prayed so hard in my life.  When we waiting for that phone call last Friday, I pulled out my Daily Devotional.  The very first lines... “Relax and let me lead you through this day.  I have everything under control: My control”  It really said that. Sometimes, it is so spot on, that I swear, somebody must be messing with my mind. I’m trying my best to take my cues from God and remember that he’s in control, not me.  Not easy to do, when it’s your baby, but I’m trying. 

Journal entry by Leslie Cavanaugh

A lot has been going on since last post, and not in a good way.  Alyssa’s diarrhea and cramping continued, going on 5-6 weeks now.  She described the cramps as debilitating.  Dr. Nelson decided it was time to take a look.  She was still testing positive for the adenovirus, but he felt like she should've been turning the corner on that by now.  In order to get a GI consult quickly, she would need to be admitted into the hospital.  So we headed up last week for just one night.  She had an upper scope and colonoscopy scheduled for last Thursday.   They took numerous biopsies from her esophagus and bowels, but it would be several days before we got the results.

We got the call Monday that she has tested positive (again) for Graft vs. Host Disease (GVHD). This time it’s in her GI tract.  We were hoping that it was just the virus, but that’s not what came back. There’s a plan to treat this.  Unfortunately it means she’s got to get back on high dose prednisone again.  He promised it would be a short burst and would do everything he could to get her tapered down quickly.  She will also be getting twice weekly infusions of a drug called Remicade.  We are sitting in the day hospital now getting the first dose.  Subsequent infusions can be done in Louisville (thank God).  He’s got 3 infusions scheduled between now and end of month and then he’ll reassess to see how she’s responded.

To say that Alyssa was upset about this latest news would be an understatement. I think it’s more the steroid than anything else.  It just seems as soon as she starts making any significant improvement, there’s a setback.  Dr. Nelson was very optimistic that this was caught early and because her skin is not affected, feels like it will be under control pretty quickly.  Hopefully not anywhere close to the last GVHD bout where she was hospitalized for 3 weeks.  This kid is tough as nails but, holy cow, she is REALLY overdue for a break.  Please continue with your prayers for my girl.

Journal entry by Leslie Cavanaugh

Alyssa’s Remicade infusions are going well.  She’s gotten 3 so far, 2 more scheduled for this week and one for next week.  Her next follow-up appointment is September 6th.  That’s probably the longest stretch she’s gone between appointments.  Her original discharge from Cincinnati (May 31), Dr. Nelson wanted to see her every 2-3 weeks. Unfortunately between the steroid wean gone wrong, the declining blood counts, the adenovirus and now the GVHD, she just couldn’t stay healthy long enough between appointments. Strong prayers that this is her last setback for awhile (well, forever would be good, but I’m a realist).

Last week, we had an opportunity to see an exhibition volleyball match between WKU and UK.  The UK head volleyball coach (Craig Skinner) had reached out to Alyssa’s former coach, Travis Hudson, wanting to do some type of fundraiser/tribute for Alyssa. The idea turned into a wonderful evening of top notch volleyball, and they ended up raising over $4000 for The Bone Marrow and Cancer Foundation.  This is the foundation that helped us with our living arrangements when we were in Cincinnati for 3 months. 
This is actually the second donation that was made in Alyssa’s honor.  Her former club team, Kiva, (thank you Ron Kordes) made almost a $6000 donation back in June.  It’s been a very humbling experience for Alyssa to be the center of attention and our whole family is grateful for the support of the volleyball community.

https://bonemarrow.org/

https://t.co/DAs4O6M9VU

https://on.ncaa.com/mzd8z

Journal entry by Leslie Cavanaugh

So here we are....exactly 1 year after we got the news that would change our lives forever.  On September 5, 2018, Alyssa was diagnosed with leukemia. 

 

Nine months after she finished her collegiate volleyball career at WKU, 4 months after graduating from college, 2 weeks after returning from Europe for a professional volleyball tryout and 48 hours after we spent Labor Day weekend at the lake celebrating all the good things in life.  

 

In just one year I’ve learned about cancer, chemotherapy, bone marrow biopsies, lumbar punctures, good blood counts and bad blood counts, insurance hiccups, denials and delays, how to research the best hospitals for her type of leukemia, bone marrow donor searches, bone marrow donor matches, active leukemia, remission, radiation, more chemo, bone marrow transplant, hair loss, chronic nausea and diarrhea, Graft vs. Host Disease, the devastation of long term steroid use, EBV virus, adenovirus, steroid weans, and more Graft vs, Host Disease.  I say I have “learned” but Alyssa is the one who has had to live with all of this and more. 

 

In one year I’ve learned that I have given birth to THE most incredible, brave, strong willed, most bad ass young woman that I’ve ever come across. I’ve learned that I have friends that would walk through fire for us. I’ve learned that family is everything and the rest of it, well, it’s just stuff.  I’ve learned that the kindness of complete and total strangers can make me believe in God again, just when I was losing hope. 

 

My prayers for the next year are simple.  Please God, keep Alyssa cancer-free.  Keep her struggles with the side effects of her bone marrow transplant to a minimum.  Keep her medical team on their toes and for them to always have my daughter’s best interest and care in mind. Please God, look out for my other 2 children as they are dealing with the fallout as well, from this horrible disease. Please God, protect our marriage from the stress and heartbreak of dealing with our child’s illness. I say prayers for the others that we’ve met on this journey, especially the McSweeney, Snyder, and Wilson families. I pray that this time next year, this will all be a distant memory. 

 

I know we are one of the lucky ones.  Alyssa has had access to the top doctors in the country.  We have insurance that is paying for the massive costs in fighting this.  We had money in the bank to pay for the things insurance didn’t cover. We have a support system in place that rallies behind us anytime there was a setback. I have to constantly remind myself that it could be worse.  

 

So, I’ll end on a positive note.  My daughter today does NOT have leukemia. I love my family.  I love my friends and I have to believe, in the end, this is going to turn out okay.

Journal entry by Leslie Cavanaugh

Alyssa’s most recent doctor visit was last Friday.  While her diarrhea and cramps from the GVHD have improved significantly, Dr. Nelson still wants to continue the twice weekly Remicade infusions, at least for the rest of this month.  He did drop her prednisone down to 25mg daily, with possible weans of 5-10mg each week.  His plan with the steroid is to get her off the prednisone and back on the hydrocortisone. According to him, the hydrocortisone has less side effects, mainly the “moon face” and weight gain.  At this point though, she’s been on prednisone for so long it will still take many months for all her swelling to go down. And she will probably have to stay on the hydrocortisone into next year.

The good part is we get to see her for a few days every week, but I think the back-and-forth is getting a little old for her.  Her next doctor appointment is on September 27th.

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Journal entry by Leslie Cavanaugh

Just got back from Cincinnati and things are definitely looking up.  Her lab work all came back great and the doctor is recommending 2 more Remicade infusions and he thinks that should do it.  He is also switching her from prednisone to hydrocortisone starting today. In about 6 weeks or so, he’ll repeat the colonoscopy to confirm that her GVHD is in remission and under control. Her symptoms (cramping and diarrhea) have greatly improved in the past month.  The steroid switch is a big deal and hopefully in a couple of months, she should see a lot of the swelling go down.  She will need to remain on the hydrocortisone for awhile.  He explained that a very slow steroid wean will reduce the chances that her GVHD would flair up again.  So, she has an infusion in Louisville next week, then back up to Cincinnati on the 11th for the last infusion and next steps. Prayers that she remains healthy. 

One request for everyone....PLEASE get your flu shot. (We got ours today, including Alyssa) If Alyssa (or any immuno-compromised person) gets exposed to the flu, it could have serious consequences.  With very few exceptions, everyone should get a flu shot.  And P.S. the flu shot DOES NOT cause the flu!

https://www.cdc.gov/flu/prevent/misconceptions.htm

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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