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!
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.
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.
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.
Well, we found out yesterday that neither Taylor or Ben is a match. Only 30% of all bone marrow transplants come from a sibling donor. Dr. Maly is confident that because of her age and race she will find a match. She will now go on the national registry to find a donor. Many of you have said you are willing to get tested. The target age is 18-44. We actually have one donor drive already planned at WKU the weekend of November 3/4. As the details are confirmed, I will provide more information on the event. The November 3rd date will be done at the men’s basketball game and the November 4th date will be at the last home volleyball match. Travis Hudson and the volleyball team have graciously offered to staff the event on November 3rd. Thank you to Todd Stewart (WKU AD) for immediately getting onboard to do whatever it takes to get this organized. Alyssa spent the best 4 years of her life as a WKU athlete and it is heartwarming to see them support her at this time. We will definitely coordinate something here in Louisville. We want to see how the one at WKU goes first, and then decide how we want to plan the next one.
She has tolerated this new round of chemo pretty well, just some headaches and general fatigue. Her energy level is getting back to normal. The steroid withdrawal is still ongoing but her chubby cheeks have definitely improved. The big event this week will be saying goodbye to her hair. In her quest to keep her hair as long as possible, she had to quit brushing it. So after every washing it went into a ponytail, then she moved to the messy bun. Dry shampoo became her new best friend. The result after about 2 weeks of this, is she now has full on dreads. (Bob Marley watch out) it’s now getting extremely uncomfortable and she’s done fighting with it. Thursday’s the day and she will have a new wig waiting for her. Nothing will replace her beautiful long hair, but hey, it’s temporary, and like everything else that has been thrown at her, she’s taking it like a champ and not complaining. This kid is my idol.
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...
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:
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!
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.
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 😬
We are back from Seattle and very glad we went. The trip itself went very smoothly. We left Bowling Green around 3pm on Tuesday, arrived in Seattle around 8pm local time. There was a rental car waiting for us, literally right on the tarmac next to where the plane parked, so Alyssa did not have to walk through any type of terminal. We drove straight to the Seattle Cancer Care Alliance (SCCA) housing. Got up next morning, spent 3 hours at SCCA, boarded the plane at 2pm and back in Bowling Green by 8pm. Spent less than 16 hours on the ground in Seattle, and I feel like we took every possible precaution we could.
The medical staff was extremely thorough...we had 2 conference calls with them prior to her appointment to go over medical records, answer questions, etc. Alyssa received a complete examination while we were there and current treatment plan was discussed. Dr. Carpenter was in complete agreement that what CCHMC is doing is not working. They made several recommendations on med changes (some added, some dropped) and want her seen more regularly at Cincinnati for the next month, to monitor progress while she starts this new treatment plan. She is still in the middle of a severe skin GVHD flare, but one of the biggest takeaways is that she is not considered chronic, she is classified as “late acute”. What he is seeing is more in line with what he would see 1-2 months post BMT. She is going back on prednisone, but at a significantly lower dose (20mg) than what she was ever started on before. Seattle’s approach is to start at a much lower dose, do a much slower wean, over a much longer time frame. So even though she wasn’t thrilled with being back on prednisone, at this dose, the side effects should be minimal. She’ll wean 1-2mg every 4-6 weeks and then stay on a low, maintenance dose for a year or more. We left very happy with the new plan and her current BMT doctor is completely onboard with all their recommendations.
So, that’s where we are today. Of course with all this coronavirus stuff, that’s just adding a new level of anxiety. Please, please, even if you are not in an “at risk” category, take every precaution to protect those that are.
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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