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.
Doctor and NP just made rounds...awesome news. Alyssa’s white blood count (WBC) which was over 240,000 at admission has now, after 1 round of chemo dropped to 21,000 !! (Normal range is under 10,000) certainly not out of the woods, and long road ahead, but very encouraging response to the chemo. They told us the drop would be dramatic, so definitely going in the right direction. Prayers are helping so please keep Alyssa in your thoughts.
WBC down to 6000. It was explained to us that she should be at zero in next day or two. Then the new, healthier cells will start growing. She has a new drug being given tomorrow. This is one that has been very successful in pediatric patients, and has shown great results in last 10 years among young adults. Alyssa had lots of visitors this weekend, which really boosted her spirits but was a bit tiring for her. Please keep the prayers coming, they’re working!
WBC was around 4700 today, so still in the good range. Other blood counts are holding steady which is good. She had 2 simultaneous IM injections today of a drug called PEG-Asparaginase. It’s been used for pediatric patients for years with good results, so they started using in young adults and were very encouraged. She will get this injection about every 4-6 weeks as it has a more serious side effect profile. So far so good on any chemo side effects like fatigue or nausea. She(they) have a pretty strict cleaning/ hygiene standard for reducing the risk of infection...mouth rinse 4x a day (for potential mouth sores) and an almost Clorox-type wipes for her skin that she uses once a day. Big thing is also keeping her picc line sterile. The nurses on 5 east are fantastic. And I kinda think Alyssa may be one of their favorites, which is not surprising. Keep positive vibes coming!
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.
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.
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.
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.
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.
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.
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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