One Year Home: Moving from Surviving to Hoped-For Thriving

One year ago today, Thomas was discharged home after 132 days in the hospital and a ten-month cumulative battle against cancer and recovery from devastating surgical complications. 

We had checked in to the hospital being told to expect a five-day stay. 

Thomas arriving home March 29, 2021,
wearing his Superman shirt

Thomas one year later on March 29, 2022,
coincidentally having chosen to wear his Superman shirt again!

Thomas came home on March 29 with four organs gone forever and an entirely new gastrointestinal reconstruction. He was in a wheelchair. He was taking about a dozen prescription medications at seven different times around the clock. Thomas was still at that time in the process of having been on previously or slowly weaning from morphine, dilaudid, fentanyl, methadone, valium, versed, precedex, ativan, clonidine, ketamine, and thorazine. He was fed by TPN, tube feeding, and a wee bit by mouth. His GI symptoms made him basically homebound and his quality of life very challenging, to say the least. 

Today we gifted Thomas with a 60-page book I've spent the last year writing, which tells him his own story. He will need to learn his own story at age-appropriate levels over and over again as he grows in understanding and maturity.

While even the state has declared Thomas disabled and he will probably qualify for benefits for the rest of his life, this child has improved in health and strength so much in one year that it takes our breath away. 

Since his cancer diagnosis, Thomas has grown 2.7 inches. From his lowest weight eight months ago, Thomas has gained 6.4 pounds and has finally surpassed the weight he was at cancer diagnosis 21 months prior!

Thomas takes only three medications twice daily, three vitamins, and two more medications every time he eats. 

Speaking of eating, we have discovered so much about what Thomas’s body can eat and what will make him sick--a learning process that is not yet complete. Currently he eats about half his calories by mouth and receives the other half by tube, with TPN long gone. 

Over the year, Thomas learned how to move and walk again! His body suffers aftereffects of more than four months in bed, but he is growing in endurance all the time. Just last night, he raced on his little scooter for a half-mile walk after dinner. Last week, he finally had enough strength to climb a tree all of ten feet up!

Our initial hope was for Thomas to SURVIVE. Now our goal is for Thomas to THRIVE. Our boy is supported by five doctors, one dietician, one psychologist, and his beloved Child Life friends. Thomas’s surgeon still watches over our boy like a mother hen, and we call, text, and email with him very often. In just over a month, Thomas will fly to Boston Children’s Hospital to meet a national expert with experience with pediatric gastrectomy, so we will gain some more power on our team! 

Goals for Thomas this coming year:

• Gain in energy and stability of symptoms so that he can participate in a homeschool co-op next fall (3.5 hours once weekly)
• Continue to process emotional and psychological effects of medical trauma to be as emotionally healthy and happy as possible
• Help him learn to socialize with other children and be on another person’s or organization’s schedule
• Continue tweaking his pharmaceutical regimen that allows him to digest food AND find a dose of the current drug or a new drug that won’t damage his liver
• Regenerate or heal his liver so his Liver Function Tests are normal for the first time since his acute liver injury
• Lower his level of oxalates to safe levels for the first time since his acute kidney injury
• Continue to gain weight and height to minimize effect of no growth for 15 months (June 2020-August 2021)
• If possible, increase the ratio of food he eats by mouth versus food by J tube
• For him to remain No Evidence of Disease (AKA no cancer) (okay, this one is all in God’s hands!)

Thanks be to God that our family made it to this special anniversary day! And thanks to our entire community for the pragmatic support to get us through this.