Ashtyn has been home from the hospital for six days and is doing remarkably well. It is interesting how perspectives change once you go through an unknown. When I say she is looking so good and doing great, I have to smile thinking back a year ago and wondering what I would have thought then. A year ago, she had hair. During the summer, she swam at the pool by day and ran around the neighborhood playing night games with her friends by night. She lived for snow cones and enjoyed BBQ’s. She jumped in the waves at San Clemente beach and knee boarded in Lake Powell. This summer she isn’t allowed to swim in the pool, go to the beach, or boat in Lake Powell. She isn’t allowed to sip on Slurpee’s or eat snow cones. She doesn’t have the energy to play with her friends, run around the neighborhood, or ride bikes with her Grandma. Her stomach can’t handle food from summer BBQ’s and pizza parties. However, words cannot describe my gratitude for how well she is doing. We could not ask for a more stable bone marrow transplant recovery. She is happy, healthy, and home. What a blessing.
As of yet, she hasn’t been able to handle much food. Though nausea is minimal, her appetite is nonexistent. Each day, she tries to eat something such as corn POPS, watermelon, mashed potatoes, crackers, or cottage cheese. Throughout the day, she will also drink small portions of apple or grape juice. With no rhyme or reason, she throws up a couple times a day and is still getting over C-Diff. It will be a process getting her stomach well enough to eat meals again. She continues getting IV TPN (total parenteral nutrition) every night. Before going to bed, I hook up a bag of TPN and a bag of lipids to her Broviac central line to infuse 116 ml per hour of fluid over 12 hours. TPN will give her the nutrition she needs until her stomach is ready to handle food.
Have I ever told you how Ashtyn takes pills? It’s entertaining. With a straw she sucks a mouth full of water or juice. She pops one pill at a time into her mouth and swallows each pill with a little of the juice that is already in her mouth. I don’t know where she learned the technique, but that is the way she has always done it. Each morning she takes three cyclosporine pills to help her body not reject Chandler’s bone marrow. She also takes Fluconazole to prevent a fungal infection, Ursodiol to protect the liver, Prilosec to help her stomach, and Amlodipine to treat high blood pressure. She drinks oral Vancomycin three times a day to treat C-Diff and is weaning off Ativan she took for nausea. At night, she also gets an infusion of Ganciclovir to keep cytomegalovirus dormant.
Much of Ashtyn’s day is spent lounging around. Her mind is bored, but her body is weak. She has spent time with her siblings, hung out with extended family, and gone to the park. We had a fun visit with friends from Texas who stopped by and our old neighbor came over to show Ashtyn their pet goats. Life is normal enough.
When Ashtyn rang the victory bell and was able to come home for good, I knew I wanted to start creating some normalcy for my family. Since the day Ashtyn was diagnosed with cancer, she never slept in a room without me. When we got home, I knew it was time for her to sleep in her own bed. Even though her room is right across the hall from mine, sleeping alone was an adjustment for Ashtyn. She recruited her six year old brother to sleep with her. Ethan has missed Ashtyn so much and was thrilled to sleep next to his sister. Each night they sleep together and I am just fine with that.
I have heard other parents of cancer kids mention how difficult it is to transition back to a “normal” life. I can sympathize. It is a process. Things fall by the wayside when cancer takes priority. There is a lot of catching up to do. The to-do list gets longer and longer with things like: Get an oil change. Fill softener with salt. Replace burnt out light bulbs. Organize all rooms, closets, and draws. Throw away or give to Goodwill anything not being used. Spring clean the house. Organize the garage. Clean my car. Go to the dentist. Catch up on yard work. Clean out kitchen pantry, cupboards, refrigerator, and freezer. Throw away all old food. Make a weekly meal plan, grocery shop, and cook nutritious meals. Reevaluate budget and finances. Go to the gym. The list can go on and on. We all have one. Transitioning back is about balance. I want to balance play time with my kids, work time getting organized, and be open to other things that matter.
One thing that matters is the desire we have to give back. Several weeks ago, I received an email from Jim who is an organizer for an adult soccer league in Cottonwood Heights. They are starting an annual 3 on 3 soccer tournament and wanted to raise money to give back to the community. He contacted me and wondered if Ashtyn’s Army would like to be involved. I met with him a week ago to discuss ideas. Jim has observed Ashtyn’s Army in the last several months and noticed the power they possess to change families lives. Ashtyn’s Army change my family’s life. Ashtyn conquered cancer and continues to thrive because of the motivating factor of the love she feels, the inspiration she receives from those cheering her on, and the miracles that have come from prayers. Ashtyn has been known to say, “I have to fight hard. I can’t let my Army down.” I am sure there are many families in need. Let’s rally together, shifting our focus and prayers, and concentrate on other families in need. We have the love, power, and energy to promote healing and encouragement to continue changing lives.
To start, we would love to find a family as soon as possible who will share their life with us as we do what we can to get them back on their feet. Life is unpredictable. You never know when something unfortunate will happen that may knock your family down. Most of these situations are temporary. A family might just need a little community support to help get their feet back under them. Maybe a child got ill requiring a parent to quit their job for a time, making bills pile up. A fundraiser might just be the answer to their prayers. Let’s join in our efforts and keep Ashtyn’s Army fighting for other families in need. Let’s keep this ball rolling! Let’s keep on keeping on with our focused, prayerful efforts and apply our time and resources to bolstering a single family in need each year. Using the power of Ashtyn’s Army to give back to additional families in need will grant continual support and strength to others and will bond our community together. There are families in need of service right in our very neighborhoods. Let’s keep our eyes open and our ears listening for that perfect family to sponsor at this year’s 3v3 soccer tournament. We need to find a family quick, as the tournament is in late August. Get your brains thinking of that perfect family in need and contact me with your ideas. Time is short this year, but let’s see what we can accomplish with the manpower we have at our disposal. The possibilities are endless. Your ability to change lives is endless. It will be a process to do this great work, but it will be worth it.
Please open your hearts and minds to help us find a family who needs Ashtyn’s Army.
Email me with a family’s story:
[email protected]