Bone Marrow Aspirate and Biopsy

Pictures are from two weeks ago when my mom and dad flew to Seattle for a visit. We enjoyed downtown Seattle and the Bellevue Festival of the Nativity. Ethan flew back home with them 10 days ago and since then our time has been spent going to medical appointments and staying occupied in our apartment. Last week a bone marrow aspirate and biopsy was done that brought about prolonged bleeding from the procedure hole in her back. I think it’s an extremely rare complication. Despite a platelet transfusion and constant pressure dressings, the bleeding continued with no signs of stopping. After 38 hours of continual bleeding, I decided to pinch the hole shut with my fingers while Ashtyn prayed the 3 steri strips I put over the hole would keep it closed. It worked and her back hasn’t bled since. On top of that, ultimate good news is that her aspirate came back showing another 0.00% leukemia result! Finding out she continues to be cancer free will always bring tears of relief and gratitude. (The cellularity results will come back in a few days.) Please pray 1. Her health will continue to be stable allowing us to go home on December 18th. 2. Neuropathy will resolve and she’ll be able to walk.

Biopsy Complication

This is Ashtyn’s nurse Devyn and physician assistant Sarah. Believe it or not, we have a lot of fun together in clinic. We laugh a lot and have great conversations but when it comes to keeping Ashtyn safe and healthy, these women are no joke amazing. Yesterday Ashtyn had a bone marrow aspirate and biopsy, a quick and easy procedure. We went to the hospital, got vital signs, walked down the hall to the procedure room, laid on her side in the bed, received anesthesia medication, slept for 25 minutes while the aspirate and biopsy was done. In the meantime I sat in the recovery room, only separated from her by a sliding door. Once the procedure was done her bed was moved 5 feet to where I watched her wake up and then wheel-chaired her back to the car. We were in and out of the hospital in 1 1/2 hours. Once back to the apartment the hole in her back started bleeding and hasn’t stopped. It’s now been well over 30 hours. A pressure dressing of gauze and tape has been attached to her back but continues to soak through. We spent seven hours in the ER last night. Her platelets are 67 which should totally be high enough to clot such a small hole. During clinic today a new pressure dressing was placed that I hopefully won’t have to take off for 48 hours. Early Saturday morning she’ll get another platelet transfusion, not wanting her count to drop much. The bleeding from her procedure site has definitely been a nuisance with the pressure dressings, soiled linens, ER visit, and added platelet transfusion Saturday, but long term the bleed will eventually stop; it will just be another complication she experienced and a thing of the past. What does ultimately matter is the results of the bone marrow aspirate and biopsy. Please pray the results will show that she remains cancer free with zero leukemia. Please pray for at least 30% cellularity which would indicate a more robust bone marrow that would allow Ashtyn to start taking Venetoclax as a post transplant therapy to keep any possible hidden leukemia at bay while her immune system becomes strong enough to do the job. And, please pray her procedure site will stop bleeding and heal properly.

Get Your Hopes Up

Ashtyn’s in the ER tonight. She had a bone marrow aspirate and biopsy this morning. After the procedure we went back to the apartment, took a nap, and woke up to a decent amount of blood on the shirt, sheet, and mattress pad she was laying on. I took off the saturated dressing and found blood was still coming out of the biopsy site after five hours. We were told to go to the ER, check her platelet count, and get a platelet transfusion. We are still waiting to get lab results and talk to the doctor. Ashtyn has had countless bone marrow biopsies in her lifetime and not once has one bled. My son Chandler emailed this quote a week ago. “Hope is manifest in confidence, optimism, enthusiasm, and patient perseverance. It is believing and expecting that something will occur. When you have hope, you work through trials and difficulties with the confidence and assurance that all things will work together for your good." I’m grateful Ashtyn perseveres through everything with remarkable optimism and patience. I have hope and confidence that this is her last fight with cancer. I believe miracles will continue to occur. I believe she will get stronger with each week. I believe she has a beautiful, healthy future ahead of her. I believe there is a purpose to all of this. I believe all the difficulties we have faced will work together for our good. I don’t know any other way to live than to believe.

Communication Between Seattle and Salt Lake City

There’s no question that Ashtyn is alive today because of hundreds of healthcare professionals in Salt Lake City and Seattle. She got into remission twice and survived two bone marrow transplants at Primary Children’s Hospital. She was able to get into remission a 3rd time and survive her 3rd BMT at Seattle Children’s Hospital. For the past several weeks there has been communication between PA Sarah, Dr. Mallhi, and Dr. Lamble from Seattle with NP Laynie, Dr. Shyr, and Dr. Maese in Salt Lake City. Preparations are being made to transition Ashtyn’s care to Primary Children’s, a BMT hospital 20 minutes from our home. Even though Ashtyn is no longer in the hospital, she continues to require quite a bit of outpatient follow-up care. We are grateful to have a team in Seattle who supports Ashtyn’s desire to go home and a team in Salt Lake City who are capable and more than willing to manage her health issues. Several days ago Dr. Mallhi, Dr. Lamble, Sarah, Ashtyn, and I had a conference call with Dr. Shyr and Dr. Maese. The purpose was to make sure everyone was on the same page regarding the plan to move forward with recovery in Salt Lake City. It was decided that we can go home December 18th! We are so excited to have an actual planned date to go home! I think the next two weeks are going to fly by. There’s packing to do and a lot of medical appointments. Ashtyn will be getting a bone marrow aspirate and biopsy tomorrow to check for leukemia and cellularity. Next week she’ll see a kidney doctor to discuss her high blood pressure, electrolyte needs, and abnormal urine test. She’ll also see a lung doctor about her abnormal pulmonary function test. Platelet transfusions are still needed at least twice a week. I’m just in awe that Ashtyn accomplished what she set out to do; go to Seattle, get into remission, and receive a 3rd bone marrow transplant. Because of what I’ve seen, I will never doubt this world is full of remarkable people who have a great purpose to impact lives for good.

Medical Update

HEART: Echocardiogram showed a wonderfully functioning heart. There’s some fluid around the heart since being sick in the ICU in August and is expected to eventually resolve. Also her recent EKG showed a normal QT heart rhythm.

GI: No signs of gut graft verses host disease which would include cramping, diarrhea, and lack of appetite. Ashtyn eats well and doesn’t have any GI problems. Also, signs of bleeding in her stomach is gone and is on a medication that decreases acid to help prevent ulcers.
SKIN: No signs of graft verses host rash. She has lots of bruises from previous low platelets but are resolving. 

INFECTION: Last Adenovirus level came back showing <300! Her level at it’s highest was 2.4 million! The current level is so remarkable that the doctor wonders if the result is correct. We have another level pending and are hoping for zero trace of Adenovirus! She continues to be on an anti fungal and antibacterial medication for possible infection in the lungs. She’ll have a CT scan in the future to follow up on a couple little growths that were previously seen. She will also continue taking an antiviral medication for a year to help prevent several viruses. 

KIDNEYS: There are still signs of injury but electrolyte balance is finally stable with a very precise oral and IV electrolyte therapy. 

BONE MARROW GRAFT: A red blood cell transfusion has not been needed since she had internal bleeding one week ago. Her hematocrit has stayed stable at 34! Her platelets are doing well also. With platelet transfusions 3 times a week, her platelet level went up to 70! That’s much higher than it’s been for many months. Next week she’ll get platelets Monday and Thursday. As the marrow produces more platelets and red blood cells, less and less transfusions are needed. Her white blood cells are increasing too! Her absolute neutrophil count is 2490 without any marrow stimulant drug! 

NEUROPATHY: is still present in her feet and legs, which prevents her from being able to walk. She takes Pregabalin to help. I’m not sure how or when the neuropathy will resolve. Please pray neuropathy will go away so she can walk again.

We are grateful for her progress.

Exhausted but Good

Morgan flew home a few days ago to not miss school and cheer. Ethan stayed in Seattle and possibly won’t go home until Ashtyn can. Yesterday I woke up exhausted and was grateful to have zero medical interactions and no obligations! That’s a first since mid July! Another thing that contributed to us being so tired was that Ashtyn and I never get more than 2 1/2 to 3 hours of sleep at a time because the fluids she gets at night makes her get up to the restroom often. With nowhere we had to be, I stayed in bed throughout the day, any chance I could, while Ashtyn relaxed on the couch hanging with Ethan. There were still medications to give, meals to eat, walking Ash to the restroom, helping her with a shower, apartment cleaning, laundry, and driving 30 minutes to her favorite Spaghetti Factory to get three nights worth of to-go meals. But all and all it was a rejuvenating day. Life is good. Today started at 8:00 a.m. for lab work, a platelet transfusion, EKG, and heart echocardiogram. She’s been out of the hospital for four days and things are looking good!

Small Glimpse

This is a small glimpse of what it was like to walk beside Ashtyn yesterday, a newly 18 year old recovering from a 3rd transplant. The morning started at 9:00 a.m. when her nighttime 1 liter electrolyte fluid infusion was complete. I handed her supplies so she could unhook the IV bag and flush the central line. She ate cereal in bed and waited for me to shower. As soon as I was ready I helped her get dressed, put compression socks on to help her puffy feet, and put my Nike shoes on her since her shoes are currently too small. I grabbed a bag full of daily pills, anti-bacteria wipes to wash any toilet she sat on, barf bag, paperwork telling me the medication and appointment schedule, snacks, drinks, and Cup of Noodle soups for lunch. At 10:50 a.m. she walked to the car using her walker with me right behind her in case she lost balance or her legs gave out. We drove to Seattle Cancer Care Alliance where Ethan wheel chaired her inside to have blood work, a check up with her amazing physician assistant Sarah, nurse Devyn, and Dr. Mallhi. We talked with the nutritionist, got a central line dressing change, and received a platelet transfusion while we ate our soup. At 5 p.m. Ethan wheeled her back to the car. We drove to Walgreens to pick up medications while Ashtyn enjoyed wheel chairing around and shopping with Ethan. We got to the apartment at 6:30 p.m. where medications and dinner were given. Ethan and Ashtyn watched Disney movies and were on their phones while the apartment and medications were organized for the next day. At midnight her IV fluids were started for the night and the to-do list was done. It’s busy recovering from a BMT. This week she has multiple appointments Monday, Wednesday, Thursday, and Friday. We are extremely grateful for where she is today so it’s impossible to complain. She also doesn’t complain about her complete lack of independence. Ash is wheel-chaired everywhere we go except in the apartment where she uses a walker. I walk behind her every step she takes including the restroom morning and night. She is not fazed by her current situation. We are thrilled with the life and freedom she does have and have total hope for complete recovery in the future.