Journal entry by Leslie Cavanaugh

Alyssa had a really tough day today.  We arrived in Cincinnati at 9am for her first radiation treatment on her brain.  Because she had some leukemia cells in her spinal fluid when she was diagnosed, (but none since starting chemo 5 months ago) to be on the safe side they wanted to do 4 rounds of radiation on her brain.  She was fitted last week for this “mask” that she wears during radiation.  She described as a piece of mesh that they heated up and then molded it to her face.  It fits extremely tight to her tight that when she was done the mesh marks remained on her forehead for several hours. She has to lay flat, pinned to the table and her head is tied down as well so that she can’t move at all.  I cannot imagine how claustrophobic that must’ve felt.  She took a couple of Ativan prior to the appointment, but not sure that helped to relax her much.  The treatment itself only lasted a few minutes, thank God. After that we headed over to the hospital, she was getting 3 surgical procedures done, one of which was inserting a new central line in her chest.  This takes the place of her picc line that was pulled out of her arm in the recovery room.  The surgery was outpatient so we are now back in our hotel room here in Cincinnati.  She is wiped out...literally fell back asleep as soon as her head hit the pillow.  My heart is breaking for her right now.  She’s been so strong so far and she still has such a tough road ahead of her.  Please keep her in your prayers, these next few weeks are going to be really hard on her.  

Journal entry by Leslie Cavanaugh

Alyssa got settled into her new digs this afternoon.  The BMT room/unit will be her home away from home for at least the next 30 days.  She was informed at admission that because she is starting total body radiation tomorrow, she will be confined to her room until probably 2 weeks after transplant, when her numbers start to get back in the safe zone.  I think that was a bit of a shock to her...we both thought she’d have the freedom to at least roam the hospital until her actual transplant.  The one bright spot was the food...the kitchen operates “on demand” meaning she basically can order whatever she wants off the menu, whenever she’s hungry and they’ll deliver it to her room.  The menu looks decent...quesadillas, spaghetti, Skyline Coneys...a lot of bar food with a few healthy options thrown in.  If only we could get a pitcher of beer delivered with the wings, we’d be in business. Eric and I will trade off sleeping here at the hospital when he’s up here.  We were able to get a hotel room close by, so at least the two of us are able to step out and get away from the hospital for a few hours. She’s still sore from surgery last week, but overall not too bad.  Have no idea what this radiation is going to do to her body moving forward but she’s ready to get this process started.

Her last weekend home was a good one.  We had a big family/friends dinner at Porcini’s on Saturday night and Mike and Vicki hosted a small sendoff party for her yesterday.  The only person missing that she really wanted to see was Jared, but unfortunately he was traveling with basketball.  There really won’t be any visitors except maybe her two brothers until she gets discharged.  They are pretty strict in regards to exposure to others and the potential for illness.  I will try to give updates as the week progresses, counting down to Day Zero-Transplant Day.

Journal entry by Leslie Cavanaugh

This week has been both uneventful and remarkable at the same time.  She finished a total of 12 rounds of radiation (4 on her brain and 8 total body) and got to “ring the bell”. For those of you who don’t know, in the cancer world, anytime a patient hits a milestone in treatment, they ring the bell to mark the moment and celebrate.  So her first bell ringing in regards to finishing radiation was a big deal.  Today (Saturday) also marks the start of her last ever round of chemo 🙏🏻🙏🏻.  Today and tomorrow she will receive extremely high doses of a drug called cytoxin.  She will also receive over the next 3 days a drug called ATG.  ATG is given to patients to help prevent something called Host vs. Graft disease (HVG)  that is when Alyssa’s body would attack her new stem cells, thinking that they are a foreign body.  The condition is fairly common for BMT patients, but it varies in its severity.  With the last radiation treatment, that was also her last chance to leave her room for probably 3-4 weeks.  Her care here has been fantastic and the nurses are as awesome as the ones on 5east at Norton’s back home.  What kind of sucks is the actual room.  Very basic hospital room, on the fairly small side with one small window that looks directly into the side of the building.  If you’re only here for a couple of days, no biggie.  But when you are literally captive in a room with no natural light for almost a month, it can start to wear on you (well, on me at least) I did make a request to get her in a room on the other side of the hall where you can actually see daylight.  The nurse just came in to tell us they might have one available later today.  I got all excited and Alyssa just looks at me and tells me I’m high maintenance.  Oh well.  

She did get to see a new face yesterday (and today). Taylor made it up here around 4pm but she kinda of slept through his visit.  He’s on his way back up to her room shortly, so hopefully she can stay awake for this visit.  Ben is suppose to be here tomorrow. I think some new faces will cheer her up, if she’s not feeling too sick.  God knows she’s sick of my face lol.

Keep the prayers coming. We are on Day -3.  Transplant Day (Day Zero) is on for Tuesday February 19th.

Journal entry by Leslie Cavanaugh

Alyssa tolerated her 2 days of high dose Cytoxin (chemo drug) pretty well. Unfortunately, the second drug she is getting, ATG, is kicking her butt.  She has had a pretty severe allergic reaction...entire body covered in hives.  Also temperature is spiking and blood pressure keeps dropping. She has finished 2 days (2 bags) already, with one bag left.  The doctor has decided instead of the bag running over the normal 8 hours, they are going to half the rate, which doubles the time to 16 hours.  Then he wants a day in between before transplant day. So, bottom line, Day Zero, just got moved back to Wednesday.  A bit disappointing but rather safe than sorry on this. Alyssa is hanging in there, tough as nails but the last 48 hours has really been hard on her.

Eric spent about 5-6 hours at the infusion center today.  He will most likely be needed to go back tomorrow for addional donation.  Everything has gone pretty smoothly on his end.  Just some aches and joint pain from the neupogen shots.

Journal entry by Leslie Cavanaugh

OK...apparently we are back on for transplant today! She finished the ATG around 5am and is feeling much better.  Hives are under control and they have given her a PCA pump for her to be able to control her pain medication.  I will update later, after she gets her new stem cells. 

Journal entry by Leslie Cavanaugh

Today is Day 0.  Her new birthday really.  The transplant process itself was straightforward.  It was about 20 ml of Eric’s stem cells that they had in a large syringe and just put through her central line. (I will upload new pictures in the gallery) The real excitement will happen in about 2-3 weeks, when her new cells start growing in her marrow.  We will start obsessing (again) about her counts.  Strange that in just 5 short months, every waking thought begins and ends with blood counts.  While Eric and I are both terribly anxious about this transplant, I know he feels the extra responsibility of being her donor.  As if he has the power to make this cancer go away.  Or not go away.  The loss of control over this situation is so maddening.  You have to trust the doctors, the nurses, the lab reports, the clinical trials that said this is the best route to take, the chemo drugs and radiation that’s suppose to clear out the last bits of cancer cells, and last but not least, I must learn to trust GOD.  The daily devotional that I started reading when Alyssa got sick has been so spot on.  Today’s entry was no different....”You need to remember who I am in all My Power and Glory.  Then, humbly bring Me your prayers and petitions.  Your problems will pale when you view them in the light of My Presence.  You can learn to be joyful in Me, your savior, even in the midst of adverse circumstances”.

Journal entry by Leslie Cavanaugh

Dear friends and family...I have a request.  For next 2 weeks or so, please refrain from calling or texting Alyssa.  She feels like total crap right now.  Her words “I know they love me, but I just don’t feel like responding but I don’t want to hurt anyone’s feelings”

Feel free to text me during normal hours if you’d like an update, but there’s not going to be much going on for at least 2 weeks.  I’ll be sure to put anything significant on here.
thank you!  Prayers are ALWAYS welcome!

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 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

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 +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

Alyssa’s GVHD did not show much improvement when she was switched back to prednisone. Decision made to up dose to 30mg daily.  This was about a week ago. Her skin was still a mess, no energy, freezing all the time.  She also tested positive for 2 separate viruses, EBV and HSV. These are very common viruses that most people have and don’t even know it.  But once they are in your body, you will always have it, but they are almost always dormant...until they “wake up” and realize you have no immune system to fight them.  Then they go crazy.  EBV was treated with a Rituxin infusion (she’s had this before, back in May, same treatment). The HSV was another produced these horrible open blisters all over her body that were extremely painful.  On Wednesday, the pain got so bad they needed to admit her to get her on a PCA (pain pump). They also started her on an IV form of an antiviral for the HSV.  I’ve never seen her so bad.  When she starts crying, I know she’s in serious pain.  Flash forward 48 hours to Friday...they got her pain under control, the medicine started working and there was lidocaine cream for the blisters that in Alyssa’s words was a “game changer”. On top of that her skin GVHD is clearing up beautifully. She literally went from one of her lowest point to the best she has felt in months, all in 2 days.  She had a picc line inserted on Friday, because we were going to have to finish the 14 day course of IV med at home.  No problem, we’ve done that before.  PCA removed on Saturday and here we are on Sunday just waiting for discharge papers.

As much as I’d like to say that she’s finally turned the corner, I can’t bring myself to think it.  She’s been here before (although nothing like where she was at on Wednesday. That was just plain scary). It’s like PTSD. I almost feel like I can’t enjoy these victories because something always seems to be lurking around the corner.  I hate being like this and hopefully this anxiety will ease over time.  Alyssa is feeling better today than she has in over 4 months.  I need to feed off her energy. She’s in a good place and I’ve got to re-learn how to be hopeful and optimistic again.  I know I’ll get there eventually. 

On a separate note...for those of you who still are not taking this social distancing thing seriously... it’s time.  There’s no excuse for being so selfish. While we were in the hospital, a story broke that 18 Children's hospital employees tested positive for Covid-19. Mind you there’s not one Covid-19 patient being treated here.  So these were all people that somehow picked up the virus and then came to a hospital...with the most vulnerable people that absolutely cannot afford to be exposed to this virus.  Of course, they never meant to intentionally spread this, BUT when you make a reckless decision to disregard medical advice TO STAY HOME, it puts people at risk. So please, please, do the right thing.

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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.