Hello friends and family,
Yesterday later afternoon, Abby was able to come home. This was very welcomed after spending 14 days in the hospital. I have added a few pictures to share.

Abby’s recovery has been a long and windy road with hopefully no new U-turns in her future. Abby and I spent three hours last night, trying to organize and figure her 28 new meds. We could not believe it either… until we started laying them out on the table. I actually took a picture because I can’t believe this. The three of us were in tears and completely overwhelmed, but after 3 hours of organizing, I think we have a plan with a spreadsheet I made to make sure we give the correct meds at the correct times. 

Abby officially has a new doctor that will continue her care and her follow up appointments. This is the best choice for Abby and our family. Abby’s recovery will take weeks and months and will require follow-up care for the rest of her life.
 The first week in the hospital was very scary and we are grateful she is on the mend. There are still a lot of unknowns that we will find out in the next couple weeks.  She will continue on her 70 mg of steroids and special drug for her chronic graft versus host disease along will all the others. Her mouth improving has been  the first sign that the steroids and special medication‘s are working. The internal organs will take longer to respond and recover. While on these medication’s, they will make her more compromised to infections and illnesses in the future. 

Abby did receive a visit from the fellow doctor that she had during her transplant yesterday before she left. She was told that as horrible as This GVHD is, studies show that her chance of the leukemia coming back because of it are extremely low. That is very good news even though this recovery is horrible. This episode and recovery is way more difficult than the actual transplant process. 

She does have a feeding tube that she has to use for her meds and to get nutrition in.  She is starting to be able to try to take a few bites of things, soft, but it is still very painful. It usually requires additional pain meds after.  She is on morphine and oxycodone for next week or so until they start to see an improvement in her esophagus. The GVHD has affected her mouth, esophagus, stomach, small, intestines, lungs and eyes, and a couple other places they suspect, but cannot prove yet. 

We share this as a journal and an update for those That are walking with us through this unbelievably difficult journey. We believe in the power of prayer and positivity. Abby continues to be brave and extremely positive, but last night she, Tim and I were overwhelmed and teary-eyed with looking at what was in front of us to maintain and manage. As a dear friend reminded me, one day at a time… and we have got this. 

We will post more information when there is a change. This will be a slow, slow process. I will end with this by saying thank you for those who reach out to us and who continue to walk with us during this unbelievable difficult journey. We are tired of being a family with so many trials and difficult circumstances. The love and support means the  world to us. It truly is the simple things like a visit to talk and laugh about ANYTHING other than medical stuff or even an amazing meal so we don’t have to eat out while dealing with the million appointments.  The meal last night was a HUGE blessing because it took all evening to get organized and give her meds. A few meds are oral, some get crushed and put in her tube, many others are liquid and get put in her tube. I underestimated how long it takes to draw up the syringes to prepare the dosages. 

Abby has made it very clear to the doctors that she will still go to young adult cancer camp at the end of May. Her compromised immune system may be a hurdle, but with parent and positivity anything is possible. Abby has also applied and is excited for her last two semesters at Mankato State University. She will start in August with virtual classes for the first semester. She will then have to move down there for the spring semester to finish and graduate. She will have a degree to be a child life specialist in the hospital working with children undergoing a medical crisis. Her drive and determination is inspiring to her dad and I.

I will end this by making a list of prayer requests. We ask and believe that:

-she continues  responding well to the meds to heal

-the GVHD will stay at bay, and not flare up after weaning off of the steroids in a couple weeks. 
- she won’t have any setbacks of infection like we had with her lungs

-there will not be permanent damage or scarring from the graph versus host throughout her body

-that we can find time to slow down and enjoy some simple things

-She will make it to camp safely and enjoy the simple things that people often take for granted.

-that this will be the last major setback in her life, all parents want for their children is to be happy and healthy while enjoying life. 

With sincerity,
The Dwyers