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.

It's My Birthday

From Ashtyn:

GUYS. I can’t believe I actually made it to 18!!
I never could have imagined the literal hell that 17 would bring. But my gosh, I couldn’t be any more grateful than I am right now.

I moved to Seattle from Salt Lake City in the beginning of March, not knowing when or if I would ever come home. I already knew cancer too well, I knew my circumstances were not good. My mom reminded me of a marathon and how the hardest part is the last few miles when each painful step makes you want to cry and the finish line seems to only get farther from you. I don’t think I could comprehend the magnitude of the miracles that were ahead of me or the amount of encouragement I’d get from the sidelines.

Tonight, I am thankful. I have more scars and bruises on my body than I can count, I can’t walk on my own, my face is beat up, I have neuropathy, and I weigh 30 pounds more than I was before because of steroids and IV fluids, but I’m ALIVE. I’ll be able to look at my scars for the rest of my life and be proud of the body I have. I’ll be able to walk again, and when I do I’m going to look down at my steps with gratitude I never would have had, had I not gone so long relying on other people to get me everywhere. My neuropathy will fade one day and the weight will come off and I will be grateful to feel myself again.

Thank you for getting me here. Thank you for your support and prayers. I know that I am alive today because of it. Because of you and the grace of God, I got to celebrate my 18th birthday... OUT of the hospital. What a freaking MIRACLE!!❤️

“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God.” -Ephesians 2:8

Walking Away One More Time

We’re leaving the hospital and I actually suspect Ashtyn won’t be inpatient at Seattle Children’s Hospital again. We are walking away with way more happy memories than sad because of all the wonderful people who work there. Thank you! We have big plans for the night and are going to start celebrating her birthday immediately. We’re going to pick up food from her favorite Thai restaurant, get a Ben & Jerry’s ice cream cake, and hang out at the apartment watching football and playing games.

Happy Thanksgiving

We are grateful for the many family, friends, healthcare workers, and strangers who have impacted our lives for good. Ashtyn is out of the intensive care unit and spending Thanksgiving on the Cancer Care Unit at Seattle Children’s Hospital where we are always treated unbelievably well. Morgan went to Metropolitan Market and picked up some turkey, stuffing, mashed potatoes, gravy, rolls, mac and cheese, scallop potatoes, pumpkin pie, cookies, chips, dip, and way more food than we could ever eat. I feel very blessed to have had a calm and enjoyable Thanksgiving with Ashtyn, Morgan, and Ethan while also knowing Chandler is well in Florida on a mission. Ashtyn is feeling so much better after her internal bleeding was discovered and successfully fixed. Remarkably she feels more strength and less depleted than she has felt in months! We will spend one more day in the hospital, making sure everything is stable, and will likely leave on Saturday just in time to celebrate her 18th birthday on Sunday the 25th at our Ronald McDonald apartment. Some may think we have more bad luck than good but we don’t see it that way. If you could walk side by side us on a daily basis you would see how truly lucky we are. Our luck just looks different and comes in different ways.

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.