Another Complication FIxed

Ashtyn had probably one of the longest upper GI endoscopies ever lasting 3 1/2 hours when in other cases could easily be done in less than 30 minutes. What took so long was that her stomach was full of 1 1/2 liters of old blood clots. It took 3 hours of putting sterile water in her stomach to scoop all the blood out. I’m so grateful the GI doctor was persistent and didn’t give up on a procedure that had no signs of progress the first 2 hours. At the end of it all, 4 liters of sterile water and blood was taken out of her stomach and the doctor then had good visualization of the stomach. The doctor found a blood vessel that had probably been slowly bleeding for several weeks. What’s surprising is that Ashtyn never threw up and had been eating and drinking everything required. Never once did she complain of feeling sick to her stomach so yesterday’s sudden blood loss and low blood pressures came as a total surprise to everyone. The GI doctor put clips around the vessel and cauterized the area. She is now back in her ICU room sleeping. Please pray that the bleeding has stopped for good and that she will begin to feel better.

Internal Bleeding

This is an intensive care resident explaining to Ashtyn that she needed to be moved to the intensive care unit for closer monitoring. At noon she was transferred to the ICU and given a fourth bag of red blood cells plus platelets. At 1:40 p.m. she was taken on a stretcher to the GI procedure room so a scope could be placed in her stomach to try to find where the bleeding is coming from. Three hours later she’s still in the procedure while I sit in her ICU room with Morgan and Ethan. All I know so far is that her stomach was found to have quite a bit of blood in it and the GI doctor is trying to wash out the stomach so she can visualize where the bleeding is coming from. At this point I have not heard whether the location of the bleed has been found or whether they are able to stop the bleeding. Let’s keep praying for Ash.

Back To The Hospital

Our first day out of the hospital was non-stop and the night was nothing like we expected. It started at 10:00 a.m. when we arrived at Seattle Cancer Care Alliance for outpatient clinic where she got lab work, a platelet transfusion, and was seen by the BMT doctor, physician assistant, nurse, social worker, pharmacist, and dietitian. Everything looked great. Around 2:30 p.m. we were done and Ashtyn still had energy to go on a few errands before we return to the apartment at 5:00 p.m.. We were excited for the following day of no appointments. At 6:00 p.m. Ashtyn took a nap and woke up at 8:45 p.m. to go to the restroom. She was light headed so before walking I gave her some orange juice. Feeling better, she walked to the restroom with a walker and me close behind. When we reach the toilet her legs collapsed so I slowly lowered her to the floor. She was conscious but dazed. I told Ethan to call 911. Luckily the paramedics are across the street so got to us within a few minutes. Her blood pressure was unattainable sitting up and very low while laying down, about 80/0. She was ambulanced to the hospital and admitted to the cancer floor. It’s 3:00 a.m. and the only thing I know is that her blood pressures are low and her gut is bleeding somewhere causing a tremendous drop in hematocrit. Currently she is being treated with big gun antibiotics incase she has a blood infection and is being given blood transfusions to keep up with blood loss. As soon as we got to the hospital I texted my friend Nadine who is inpatient with her daughter. I found out her husband Scott was in the hospital and Dr. Kelly Faucette was the oncology night doctor. Ashtyn asked them to give her a blessing which gave her a lot of peace. I’m completely perplexed as to what suddenly happened that changed her from appearing completely stable to being in the hospital with such troubling and unusual findings. Please pray we will find the cause and her health with resolve quickly.

Leaving The Hospital

It’s official. On BMT Day 106 and after 112 days straight in the hospital, Ashtyn was stable enough to be discharged. After spending the day wrapping up loose ends and packing up her room, Ethan and I wheel-chaired her outside at 4:30 p.m. as the sun was setting. With about 15 minutes left of dim light in the sky, she wanted to drive around. I drove her through University Village, an outdoor shopping center 0.5 miles away, to check out what shops and restaurants were there. We then went to Metropolitan Market, stayed away from crowds, where she picked out soup, stuffing, and pumpkin pie for dinner. She and Ethan enjoyed the evening relaxing in the apartment while I did laundry and unpacked suitcases. I spent almost 2 hours organizing one weeks worth of medications, being slow and meticulous to not miss, or mess up on, the 49 oral pills she takes per day. Before going to bed I hooked a one liter bag of IV fluids with electrolytes to her central line that she’ll receive each night over 10 hours. We are all settled in and the timing feels perfect. Ashtyn’s first impression of being out of the hospital was how weird it felt. She also loves the “space to move”. Soon after walking into our apartment she said a prayer of gratitude giving all credit and glory to God for helping her get to where she is today.

Grateful For The Hospital

It’s been 105 days since Ashtyn received her third bone marrow transplant and 111 days straight in the hospital. We don’t know for sure but the plan is for Ashtyn to leave the hospital today! Everything seems to be in line but we’ll know by afternoon and reality will hit once we are driving away. We are grateful for the miracle that, after all she’s gone through, Ashtyn’s leaving the hospital alive, cancer free, and relatively healthy. It’s a day to celebrate and be grateful for. We will be living at the Ronald McDonald Apartment’s in Seattle, go to the BMT outpatient clinic 3 to 4 days a week, and hopefully have everything stable and organized to fly home mid-December. What’s Ashtyn most excited for when she leaves the hospital? Simple freedom. Freedom to be somewhere different than her hospital room. We are grateful for the time spent in the hospital and all the vigilant eyes that watched over her. Ashtyn was blessed to receive the lifesaving bone marrow transplant and be cared for by many talented, passionate, brilliant, kind people. We have both been impacted for good from constantly being surrounded by such unselfish, thoughtful, and loving people. Our hearts will always love Seattle Children’s Hospital.

It’s appropriate that Ethan is here 

for our last night in the hospital.

We came to Seattle Children’s not knowing one soul. 

We are leaving knowing some of the best of the best. 

Milton is one of them.

Nurse Kelsey goes on medical humanitarian trips 

just like Ashtyn plans to do.

Dr. Beth is a fierce mom who would sacrifice anything 

for her children the way Ashtyn plans to be.

Dr. Faucette is an example of being 

nonjudgmental and kind in all he does.

BMT moms! Nadine is from Utah. Her daughter Chelsea got a 

BMT 5 days before Ashtyn. They left the hospital at the end of August 

only 26 days after transplant! Nadine has gone to Trader Joe’s for me, 

picked me up from the airport in October, and is always a text away to chit chat.

The Hard Is What Makes It Great. VIDEO

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.” —Theodore Roosevelt —

BMT Day 102

It was decided that Ashtyn needs to stay in the hospital until at least Monday. Her kidneys are still injured which requires nighttime electrolyte fluids. Her marrow still has minimal cell production which makes her need platelet transfusions 3 to 4 times a week and red blood cell transfusions weekly. In addition, her white blood cells are still low with an ANC of 700 so she needs a marrow stimulant medication G-CSF from time to time. Daily she swallows more than 50 additional pills. All these issues will take time to resolve and meanwhile can be managed outpatient, but more time is needed to safely leave the hospital. The exact amount of electrolytes in the nightly fluid is still being tinkered with and discharge logistics need to be ironed out to guarantee a smooth transition to the outpatient team. It is often said by many at Primary Children’s Hospital and Seattle Children’s Hospital, that she is a “unique”, “unusual”, “complicated”, “challenging” patient who is “sometimes a mystery”, “makes us think”, and “keeps us on our toes.” Non of those words are ever said negatively but rather with the highest respect and admiration for Ashtyn. She would love to leave the hospital as soon as possible but is handling the delay with grace. What also broke her heart was hearing the news that Marlie is not allowed to stay at the Ronald McDonald Apartments with us. After crying for awhile, I sensed a calm in her. She said, “I’m learning to let go of things I don’t have control over.”

Morning Medications

Marlie