TJ Needs Your Help

December 29, 2019

This is so long overdue, but it’s time to finally finish up our quilt raffle giveaway in support of Tj’s medical fundraiser. I’m embarrassed at how long it has taken me to complete this quilt giveaway! Most of it is because TJ and I have had a hell of a year, the other part is that this quilt is so beautiful I have enjoyed having it in my home. Unfortunately, we found out a few months ago that TJ’s autoimmune liver disease (Primary Sclerosing Cholangitis) is back and attacking his new liver. We are devastated by this re-diagnosis, and have been trying to figure out how to keep living a good life despite this awful news. We have been taking things one day at a time, soaking up the good days, time with the kids and each other. We could not have made it through any of this without the help of our amazing community and of course our forever liver sharing sister Rachel Erkmann (and family). You all rallied around us and we were able to raise over $27,000 to cover TJ’s medical, living, and travel expenses since his transplant in July 2018. Since TJ came home after 6 weeks of living in Salt Lake City recovering from surgery, we have made 25+ trips to SLC for appointments and procedures. We have used over $20,000 of the funds raised to make this travel and ongoing medical care possible. Thankfully, we still have the remaining funds to help us through the inevitable trips to SLC for TJ’s future care. (As an fyi all donations are tax deductible and can only be used for medical expenses.) All of this is to say, THANK YOU! Those two words don’t seem like enough to express our gratitude, but it’s all I have. After reviewing and randomizing and praying over the list of everyone that donated to TJ’s fund, this beautiful handmade quilt will go to Nancy Fuhrman and Roger (I will private message you and arrange for delivery). The Fuhrman’s are a special family that have been in TJ’s life since he was a kid and also happened to know the Erkmann’s, it’s meant to be! This butterfly quilt is such a beautiful message of hope and endurance (created and pieced by my mom, Jane Holbrook, and quilted by my aunt, Pam Cope). My mom so perfectly titled this quilt “don’t quit before the miracle happens”. Thank you all for your patience in my huge delay of getting this giveway completed. Here’s to a fresh new year, one day at a time, hoping for many more good days. ❤️

July 17, 2019

Happy Liverversary to TJ and Rachel!

1 year ago today we woke up nervous and hopeful for what was in store, and we went to bed that night with a successful surgery behind us, Rachel with a little less liver, and TJ's new liver already producing bile and getting to work! It has not been an easy recovery process, but we knew that going in. We were told that it would be at least a year recovery. We have had many wonderful beautiful moments this past year. I am especially in awe of the generosity of others and the power of a loving community. My favorite lesson from all of TJ's struggles with chronic illnesses and even the roller coaster ride that this recovery has been, is that we have become pros at enjoying the little moments of joy that exist within every day. From getting a hug from one of our kids, to laughing at a silly joke, to just sitting on our patio watching the sunset. We all strive for happiness in our lives, and sometimes it takes an event like this to remind us that it isn't some huge amazing thing that makes us happy, it's the day to day. It's the things we don't even notice or miss until you are faced with mortality of yourself or a loved one.

Rachel is still doing very well. She has no lasting effects from the surgery, and recently had her 1 year follow up appointment in Salt Lake City and was released from the surgical team's care!

I think the unpredictability of TJ's recovery is what has been the hardest. The month of May TJ was feeling the best he has in a long time, we started going for bike rides, he was doing projects around the house and suggesting getting a gym membership. The main remaining issue from TJ's transplant is one stricture where 2 bile ducts were stitched together. The scar tissue in that spot created a narrowing that caused bile to not be able to flow freely which in turn elevates TJ's liver function and makes him feel nauseous, tired, and in pain. Since January TJ has had six ERCP procedures. An ERCP is a endoscopic procedure in which a scope is passed through the mouth and digestive tract into the bile ducts. TJ has had multiple stents of varying size and material placed into that stricture in an attempt to stretch it open while keeping the bile flowing through. The stents do a very good job of stretching the scar tissue open, but the inorganic material of the stent is prone to bacteria sticking to it. TJ has had a couple pretty major infections due to the stents. One did turn septic in the beginning of February, the second infection on Memorial Day weekend was caught just in time before it turned septic. Right now TJ is stent free for the first time this year! It is exciting, but this is definitely a trial period. There is a very good chance TJ will be getting another stent in the near future.

I am so grateful for TJ's team of doctors at the University of Utah, for Rachel and her family and community that has adopted us, for our kids that have endured all the ups and downs right along side of us, for TJ's mom who spent 6 weeks in Salt Lake City with TJ while I had to go back to work, and both of our families. We absolutely could not have done it without each and every one of you. We are so excited to see what the next year will bring!

Ainsley

October 23, 2018

It’s been just over 3 months since TJ’s transplant, and what a ride it has been! I’ve been updating Facebook on TJ’s (and Rachel’s) healing progress, and I’ve failed to post an update here since 3 days post op!

Rachel had her 3 month post op check up last week, and she is doing wonderfully. She said it doesn’t feel like she’s had surgery at all. Somehow she feels a little guilty for that because of TJ’s long healing process. But that is our biggest hope for her, no lasting effects from the surgery.

TJ is doing pretty well. A few hiccups here and there as his body adjusts to all the new liver and new medications. That is not unexpected by his transplant team, as they have told us many times that their job is to manage complications as they arise. We continue to practice our patience and trust in the process as it unfolds.

We are so grateful for all the amazing support we have received throughout this journey. All of this was made possible by the community surrounding us.

Lots of love,

Ainsley

July 21, 2018

Wow! What an incredible and overwhelming 3 days it has been! TJ and Rachel had their surgeries on Tuesday (July 17th), and they both went very well. Rachel’s surgery began around 8AM and she was recovering in the ICU by 3PM. TJ was taken back at 12PM, and his surgery began at 2PM. The surgeons said that Rachel couldn’t have had a more perfect liver for TJ. TJ didn’t need any blood products or transfusions, which is very rare. They were able to extubate him in the operating room and he was recovering in the ICU by 9PM. So many answered prayers just regarding the surgery alone. It went exactly as the doctors hoped it would.

Rachel was up and out of bed that same evening, but her main struggle initially was keeping her nausea under control. She was moved out of the ICU and into a regular hospital room the next afternoon.

Physical therapy had TJ up and out of bed the morning after surgery, and he walked to Rachel’s room for a short visit. It was the sweetest reunion I have ever seen. Keeping TJ’s pain under control was the biggest issue, and he was moved out of the ICU after 2 nights. He happened to get a room right next door to Rachel.

Now we are on day 3 and Rachel is doing wonderfully. She has showered and been out of bed a bunch, visiting TJ, walking down to the balcony, and today a trip to the Starbucks in the lobby. She will probably be discharged in the next couple days, and when she feels ready, will travel home to Boise with her parents.

TJ’s IV meds have now been switched almost entirely to oral medications, and he was out of bed and took short walks 4 times today. He had a very rough night last night, but he made it through that and has been much much better today. TJ has been sleeping a lot, especially after each trip out of bed, and even after brushing his teeth or washing his face. One of the therapists explained that his body is burning so many calories trying to heal, that any other activity is very draining.

Thank you all for the support, prayers, and love. It really has made all the difference. We are in awe of everything that has happened in such a short period of time and can see the future unfolding before us. We are so very grateful.

July 16, 2018

TJ and Rachel’s surgery is tomorrow and we can hardly believe this day is almost here! It feels so surreal, but we are all ready to get onto this next chapter of healing. We are getting settled into our home away from home, a 2 bedroom apartment close to the hospital. TJ doesn’t have to stop eating until midnight tonight, so we will all enjoy a delish dinner this evening. I will post updates tomorrow on my social media when I am able to. Thank you all so much for the love, support, and prayers. This community has been surrounding us more than we ever imagined.

Ainsley

July 3, 2018

Two weeks until surgery day! It felt like time was moving so slowly for the last couple months, and now it is speeding along. This amazing family and ours will forever be connected by the gift Rachel is sharing with TJ. So grateful for the generosity that is coming our way and so grateful that our paths crossed a year and a half ago. In fact, we will never quite be able to express how thankful we really are, someday we will pay it forward to others in need.

June 1, 2018

I can't express enough the deep gratitude TJ and I have for all of the support he has been receiving. As many of you know, TJ's Dad passed away recently, leaving a giant hole in our hearts. As the waves of grief crash in, there has been the wonderful blessing of family and friends comforting and lifting each other up. The reminder of the fragility of life and the importance of sharing love is so near at times like this.

With 45 days until TJ's liver transplant, you all have already helped us raise almost $3,000! That is incredible, and I am blown away by everyone's generosity and desire to help. I am hoping to keep this momentum going, in some form, as TJ faces a lifetime of anti-rejection medications and medical follow up expenses. My dream is for him to focus on healing and living the long life he so deserves without the worry of medical and travel costs. As I work on my ability to accept help and support (this has always been a challenge for me), I was reminded by a dear friend: how wonderful would it be for us all to be able to just focus on the joy of this amazing opportunity?!

Again, thank you all so much!

Ainsley