Timmy's Tale

Happy 3-Year Cell Anniversary Timmy!

It has been three years since Timmy received his new cells from his wonderful donor from Germany Martin Richter. We thank God everyday for Martin, and the gift of life he gave to our sweet Timmy. 

I realized that I never shared what we learned about Martin.  I had reached out to him in May of last year, and we heard back from him towards the end of summer.  We have shared a few notes via email.  He had not heard anything about his donation until I reached out and was so thrilled to hear about Timmy's progress.

Martin is 25 years old and was born in Berlin.  He now lives in Hamburg and is an officer in the Germany Army.   During his officer training, he studied mechanical engineering in Hamburg at the army university. He told us that it is the duty of all young officers to register as a possible donor, which he did in the spring 2011.  He was notified that he was a match shortly after registering, and donated his cells on January 31, 2012 in Hamburg.  They were then flown to Cincinnati where Timmy received them on February 1.  AMAZING. 

It's funny, Martin told us that outside of his time with the army, he is a martial arts fighter.  We think it's only fitting that Timmy's donor is a tough fighter, just like him.  Today we cell-abrate both of them, and their courage and bravery. 

Happy New Year!

Happy 2015 to all!  We had a wonderful holiday season and are excited about the dawn of a new year and all that lies ahead for Timmy, including PRESCHOOL!!!  That's right, our little man will be starting preschool on Monday!  WOOHOO! 

Three years ago we were in Cincinnati in the midst of Timmy's pre-transplant tests and after a long, long road, here we are prepping for school. Thank you Lord and all of you for the constant prayers which have helped Timmy get to this stage. 

As you may recall, Timmy's team in Cincinnati told us that he could begin attending school in January, ideally with a smaller group of children.  We are thrilled to have found a school right around the corner that has a class of just nine kids.  He will go three days a week for half days.  Naturally, Charlie and I are so excited but also wary, but Timmy is just so ready for this.  He visited the school and loved it, and keeps asking when he's going.  We'll see how it goes on Monday. I think Mommy may have a harder time than Timmy :).

Tim continues to improve on his development skills.  He "graduated" from speech therapy this month and is doing great with occupational and physical therapy.  He will continue to both therapies at home, at least until we see how he's developing at school. 

Timmy received another round of vaccines this month (his third round), and will be tested later this month to see how his immune system is responding to the immunizations.  He seems to be responding well but at the same time he's had a number of colds this season that just seem to linger.  The docs aren't overly concerned and have been keeping an eye on it.  We are quite eager for the results of the tests.  More to come on that. 

We wish you all a happy and healthy 2015!

P.S. Credit goes to Tim's talented cousin Maggie Bardol for this photo! 

I didn't get my act together to send cards this year but wanted to wish everyone Merry Christmas and Happy New Year.  Will post some updates soon - Timmy is doing very well!  Thank you for all of your continued prayers and support this year!!  God bless. 

"Hi, my name is Olaf and I like warm hugs!"

It has been entirely too long since I've posted, but as I've said, no news is good news.  And I only have good news to share - YAY!  Here's Timmy in his Halloween costume as a character from the movie Frozen - a great movie no matter the age!

Timothy is doing very well. He is growing in leaps and bounds - on so many fronts. While he is not in school yet, he goes to a couple classes each week for music and speech therapy where he is interacting more and more with kids his age. He picks up on everything and his therapists are so impressed with his development. In fact, he will be stopping speech therapy in the next month. 

Physically, he is growing like a weed. He is getting so tall! Clothes that fit him last month are now too short which is amazing to us after he didn't grow for such a long time.  It's so fun to watch him experience new things, "firsts" if you will.  Last week, we went trick-or-treating (despite the nasty weather), and while he was timid at first, he loved it.  And he loves his Olaf costume, "the snowman from Frozen" as he calls him. 

Timothy is definitely acting his age. He wants do everything on his own, and often says "I can do it" to whatever task is at hand.  He is also a bit mischievious, as three year olds can be.  We're looking forward to age four :)  And, every day, we thank God that we can look forward to age four and beyond. 

We know we have been truly blessed with the progress and outcomes of Tim's transplant. Some of our dear BMT friends, including two young boys Aaron and Zachy, are continuing to fight their way through.  I know I've asked for a lot of prayers, but if you could please keep these adorable, sweet boys and their families in your prayers, it would mean a lot to us. As we know, the power of prayer is amazing!

Last, but CERTAINLY NOT LEAST, we want to give a shout out to Tim's brave cousin Kevin who tomorrow, will celebrate his 8-year cell anniversary!!!  For those of you that know and see Kevin often, you know he is A-MAZING and doing very well.  We love you Kevin!!

XOXO

 
Way too much time has gone by without an update, but as they say, no news is good news!  We took Tim back to Cincinnati in mid-June, and it was a great visit. Tim's doc was thrilled with his growth and development.  As you may recall, he has been free and clear of his IV infusions for several months now, and the team was very impressed with his counts. So, they reduced his oral meds, and today we are happy to report that he is completely done with all of his BMT meds!!  Woohoo!

They also decided it was time to start his vaccines.  He received four shots in his thighs and was a total champ.  Mommy was more of a wimp :).  He has never had immunizations prior to this, and will only have "dead" vaccines for the next year as they do not want to proactively inject him with live shots that may induce illness.  He goes back for his next round of immunizations in August here in Chicago as the team in Cincinnati does not need to see him again for one whole year!! 

While in Cincinnati we discussed Tim attending preschool, and we all agree it is best to wait until January to start school. That said, Tim is in the free and clear to attend classes with small groups of kids.  We enrolled him in a music class which he absolutely loves!  He is also starting a group speech therapy session tomorrow, which will give him another opportunity to interact with kids his age.

Timmy has been having a great summer, spending time with family and friends.  We were thrilled that he was able to attend the July 4th celebrations at home and see so many of you!  He is a regular on the local park scene here in Chicago :).  When in Indiana, he loves swimming in the pool and spending time playing in the sand at the beach.

He is growing - both physically and mentally - in leaps and bounds.  Charlie and I are just amazed every day with how big he looks and acts. It's quite funny to hear what comes out of his mouth each day.  He is also very much a typical three-year-old so we're working on that :)

A couple of weeks ago, Tim started to sound stuffy and of course we freaked as this was his first cold. See, you would think he had been "sick" before transplant, but because we detected his illness so soon, he'd been on preventive meds from the very early stages of his life.  So for him to have an actual cold - an illness unrelated to his BMT - was new territory.  While he felt icky for a few days, he was able to fight off the cold all by himself.  That's right, his immune system was able to fight off the illness all on its own.  A-mazing.  

Our little man sure is amazing as are all the people who have helped him and us get here  - from our wonderful family and friends to the incredibly smart and talented team of doctors and nurses.  We know we are truly blessed, and thank God every day for our miracle.     

Because I'm Happy!

Wow, sorry so much time has gone by without an update.  We've been quite busy and have a lot of great news to share! 

After months of waiting, we finally received the name of Timmy's donor.  His name is Martin Richter.  Martin Richter! He is now 24 years old and from what we know, he still lives in Germany.  We have reached out via email, and have yet to hear back.  Of course, we are so curious to learn more about him and understand why he donated, but we were told that some donors don't respond.  More than anything, we just wanted him to know that he will forever be a hero to us for the amazing, selfless act he did so that Timmy could lead a happy and healthy life. 

We received fabulous news that Timmy is being granted a wish from the Make-A-Wish Foundation!  This is the wonderful organization that also granted wishes for our nephews, Brendan and Kevin.  We had been told by our social worker in Cincinnati that Timothy wasn't eligible for a wish from this particular group due to his age at the time of the actual transplant (MAW looks to grant wishes for children 2.5 years and up).  But given that he was still dealing with and recovering from complications from the transplant at that age, we just weren't understanding the reasoning.

Witnessing all that Timmy has been through, my Dad decided to take matters into his own hands.  He reached out to his colleague who serves on the board of a local chapter of MAW and shared Timmy's story.  That set things in motion and after reviewing his case, MAW deemed that he is in fact eligible for a wish!! We are beyond thrilled with this news as our little man so deserves this. We are planning to visit Disney World but need to decide when the timing is right for Timmy. 

We've been blessed with gorgeous weather over the past few weeks whch has allowed our little man to do so many new things.  We've spent a lot of time at home in Indiana, and took him to the beach for the first time - he loved it!  We thought he might freak about the sand but he's been playing a lot at the sandbox at a local park and just thought the beach was his giant sandbox!  He dipped his toes into the (frigid) waters of Lake Michigan for the first time, skipped rocks with Daddy and played in the sand and rocks with his cousin Edward. 

We were given the okay by our team to let Tim go swimming in pools (lake swimming is still TBD), and he is a little fish! We weren't sure how he'd take to the idea, but he's been swimming a number of times now, and he just loves it!  We also hit up the library for the first time.  Timmy loves books and just kept running around, grabbing books and plopping down in the fun chairs to read.  I think the librarians thought we were crazy but I just beamed with happiness at his pure joy. Ah, the simple things! 

Also a first for all of us - we left Timothy with his cousins, the Bardol's, for TWO whole nights while Charlie and I took some time for ourselves to celebrate our anniversary.  Paranoid as we are, we were only 30 minutes away but it was great for all of us.  Timmy had an amazing time with the Bardol's and did just fine without us.  He was probably pretty sick of us and needed some time away! 

LIke I said, there's a lot of great news to share.  Next time I won't wait so long to update!  We head to Cincinnati on Wednesday for a check-in with the team so more to come on Timmy's progress!

Here’s Timmy having fun at the park!  He’s a man about town these days!  This photo was taken just steps away from the Kindergarten classroom where Charlie and I first met – and where we celebrated our wedding! It was so fun to finally be able to bring him here. 

Tim has been having a lot of fun lately, exploring new places and hanging out with friends and family!  After more than two years of having to decline invitations to gatherings, we were beyond thrilled to take Timmy to his first egg hunt with great friends.  We also took him to Easter mass, which was his first time in church since before transplant. And while new situations and environments are overwhelming to him at first, he seems to adapt pretty quickly.  Charlie and I are adapting too as it is a whole new world for us to have our little man out and about.  But we couldn't be more thrilled and have a list a mile long of all the places we'll go and show him!

In terms of treatment, we are staying the course with monthly lab draws, and he has two of three lab draws down.  His numbers have dropped slightly but are still within normal range. He will have another lab draw in mid-May, and then we'll head to Cincinnati in June where the team will run another immune study.  Those results will dictate next steps so we are quite anxious for June to come! 

Happy 3rd Birthday Timothy!

Timmy, it is hard to believe you are three years old today. And it's hard to believe you are only three with all that you have been through.  You are the ultimate fighter and our hero!  We are so proud of you! 

Timmy had a great weekend celebrating his birthday with family.  In fact, he had TWO parties to mark his big day, and boy did he have a great time playing with cousins and eating his favorite treat - CUPCAKES! Given that he was in isolation for his past birthdays, we are beyond thrilled that he was able to be around family this year. 

Timmy, we will continue to celebrate you today and all year long! You are the best, little man, and we love you more than words can say!   

Steroid-Free!

This week, Tim took his final dose of steroids after being on them for more than 2 years! Woohoo!  It was a big moment in our house as he took the med (yes, he does them all on his own). 

We took Tim in for his first blood draw since stopping his infusion earlier this month, and as we assumed, it was very hard for him (and mommy too).  Thank God, his results came back good. His levels dipped a little, which is to be expected, but nothing alarming.  We go back mid-April for his next lab draw. After the lab draw ordeal, sweet treats were in order, so I took him to the bakery for the first time.  It was priceless to watch him ohhh and ahh over all of the cupcakes, cookies, etc.  He definitely has a sweet tooth!

Timmy is doing very well.  His therapists are all impressed with his development and progress. He is talking a lot, picking up new words every day.  Since Chiberia has warmed up a bit, he's been able to go out for some walks and play at a park nearby.  He is still "cooking" up a storm and loves playing with his trains, planes and automobiles!  He loves to dance and just run around - it's just a blessing to see him have so much energy! 

Timmy will be turning three in a couple weeks, and our "baby" is finally growing up.  Sure, this guy is wise beyond his years, but he is physically growing like a weed.  I swear every morning he looks taller, and he grew more than an inch in the last month!   

We just couldn't be prouder of him, and can't wait to see what each new day has in store for our Timmy!  XOXO

Woooohooooo!

 

I don't think the happiness we feel right now can be put into words but I will try to do my best! As I've mentioned, we went to Cincinnati in mid-February for a visit with our team, and while there, they ran immune function tests as they always do.  We have been (im)patiently waiting for the final results from our team, and today, we received the best news we've heard in a long time.

After reviewing his immune study results, Tim's doctor is stopping the infusion (IVIG) he has gotten every three weeks since he was eight weeks old.  The purpose of the infusion was to give Tim the antibodies his body didn't produce to help him fight off illness.  Tim's doc feels his immune system is now operating well enough on its own to fight off illness without the infusion.  And because of that, Timmy is basically out of isolation.  That's right - he's free!!!

Wow - even putting this into words is giving me chills all over again.  I was actually working from home when I received the wonderful email from our team (pictured above as I want to have this documented for Timmy forever).  I screamed and then the tears of joy started to flow as I ran to find Timmy and give him huge hugs. I will never forget that moment with him.  He won't remember it, nor did he get why I was crying and smothering him with kisses.  But, we will continue to tell him every day that he is a miracle and a true hero.

While we wish we could close this chapter of Tim's life, the road doesn't just stop here.  We have to keep a close eye on Tim's levels now that we've stopped the infusion, so he will still have monthly lab draws to check his levels. We pray they remain consistent so that he doesn't ever need the infusion again.  While the team did reduce Tim's daily oral meds, he is still on several each day, including steroids.  We are weaning the steroids, and he should be steroid-free by the end of March!  And while he's been freed from isolation, our team has told us to proceed with caution until we are officially through the winter cold/flu season. 

Charlie and I want to say thank you to everyone for all of the love, support and never-ending prayers, which have helped Tim get to this day.  There aren't enough words to describe how grateful we are but just know we've felt the love throughout this entire journey!  Xoxo