Challenges Arise as Talan's Disease Progresses - But He is FIGHTER!

As parents to a child with a rare disease, it is the hardest thing to continually see Talan with so much pain. In return, there is a lot of worry, stress, strain and 24/7 care given to Talan from us parents. Through various events of doctors not wanting to see Talan anymore because of his rare disease, the only option that we as parents could do for Talan at this time is to have hospice come into our home. We know some people have already heard of this happening for Talan, but we just wanted to clear some things up. This decision has by far been the hardest choice to emotionally realize that Talan needed this type of help. No one ever thinks of putting their 25 year old son on hospice at such a young age. 

Love that SMILE of his!

Talan is at a point that the pain is so excruciating that he is awake for about 2 hours out of the day. When he is sleeping he is still is so much pain that he is uncomfortable. He is at 3 liters of oxygen almost all of the time. The disease is starting to take over and harden his lungs and is throughout his digestive track. IGg4 Systemic Sclerosing Disease is ugly and mean. Doctors told us that it was time for him to go on hospice. With the help of hospice, we are able to keep Talan home while trying to keep him comfortable where the doctors can’t help.

We know and feel that this is the best option for him right now in his life. Once again, it was the hardest realization that he needed this type of care. Talan has had hospice service for about a week now and it has been so nice to be able to have some additional help and care for him. We have an awesome nurse (Lori) who is very kind, loving and understanding and will do anything for him to help him. We have also had an awesome Social Worker and a Chaplin come and talk to Talan. The Chaplin has been an LDS Bishop and Seminary Teacher and was able to help with a lot of Talan’s “why me” questions and replace them with “what” questions. What am I supposed to learn from this? What are others supposed to learn? We truly cherish our time we have with Talan and pray for many years to come to make memories with him!

There is never any time frame with this disease and as to how long we will need hospice in our home. I have put together some bracelets, lanyards and dog tags for Talan to show support and help for him. 

Times are still hard and Talan still needs your love and prayers. Talan’s moto is to NEVER GIVE UP and we will continue to fight to the finish! Talan Summers, you are our hero and we will all continue to fight this battle with you!