It's a little bittersweet but we are home and soooo happy!!!!!
Warning: this is a long post and requires a beverage at the end so grab it now :)
Lyla was weaned off steroids a few weeks ago because she had such a good response, but after 5 days her platelets and now red blood cells are dropping steadily. The antibody issue is still there. Her transplant has worked but for some unknown reason Lyla's new white cells are creating antibodies against her new platelets and red blood cells. It is an relatively uncommon issue which arises later in transplant and is unexplainable. There is a limited opportunity to fix the issue so Lyla just started on an immune suppressant to wipe out her immune system again and will hopefully stop the antibodies from returning. The scary part is she will be so vulnerable to all infections and even a minor virus could be deadly. The good news is we are returning home because even though it's a significant complication, it's going to be a long, slow process and we feel being at home is the best place for all of us. The next several months are going to be so scary and puts an overwhelming pressure on Steve and I to keep Lyla healthy, but we have a plan and are optimistic!!
I wrote the below the day before we were supposed to head home a few weeks ago and although Lyla's journey is far from being over, going home is still a huge milestone...
To say life was like a storm on April 4th 2016 on the day we received Lyla's diagnosis, is an understatement.....the tears flowed like a monsoon, my body shook like an earthquake, and the life I envisioned for my daughter was torn to the ground. I truly thought our world had ended.
I asked why us, I struggled to comprehend what her disease entailed, but most of all I felt so guilty. As a parent your duty is to protect your child and I had failed within the first moments she was created. I passed on a defective gene that would cripple her body, deteriorate her brain and end her precious life after it had barely begun. I held my beautiful 7 month old daughter so tight. I sobbed because I couldn't bear to watch her smile fade away and her energy disappear day by day over the next couple years. It wasn't possible. Lyla was too perfect, she had too much personality, she was too smart, and she could already throw a tennis ball so well.
It's actually impossible to envision your child's dreams crashing down. Luckily this inability was my saving grace over the following 24 hours. Lyla was still Lyla and I couldn't help but smile when she did and enjoy every moment with her. Everything had changed but nothing had changed.
Rock bottom is a scary place to be but the saying is so true, the only way out is up. The days to follow were full of all good news - Lyla has the most severe but most treatable strand of MPS, the University of Minnesota specialises in treating her strand, and Lyla was diagnosed before the disease had caused significant damage. After thinking our world had ended, all my dreams for Lyla to live a normal life came flooding back. I pictured her walking, talking, playing with friends, going to school, and most of all smiling forever and ever. To say I was optimistic is untrue because I had no reason to be pessimistic. The closest option to a cure was available and the odds were worth betting a million dollars on. All we needed was a cord blood or bone marrow donor with at least a 4 out of 6 match.
A very special girl born only 3 years ago was Lyla's angel, her perfect match, her new best friend that would live in her dreams and help her through every step in life. Nothing would ever tear them apart; they would forever be blood sisters. A precious newborn life would bring endless joy to two moms and two dads. By creating one life another was saved.
My restored dreams for Lyla started with her angel but were completed by every single person who has been a part of our life in the last year....
To Lyla's pediatrician, Dr Lichtsinn, we owe you everything. Thank you so much. My gratitude is beyond words. You are the reason Lyla will have dreams and a life filled with beautiful memories. I can't wait for the day Lyla can thank you in person.
To Dr Lindstrom, Lyla's genetic doctor and the key person in diagnosing her disease. Thank you for your incredible knowledge and knowing straight away what to test Lyla for. I'll never forget the dreaded phone call from you at 4pm on Monday April 4th. You have an incredibly hard job, but your ability to clearly explain Lyla's disease and put our fears at ease are the only reason I survived that first week.
To Dr Orchard, Lyla's head transplant doctor who has dedicated his life to finding a cure for Hurlers Syndrome, you are a hero. You have saved our daughters life and so many other children. The world would not survive without people like you. I thank you from the deepest place in my heart. And, I'm sorry Lyla is scared of you and your stethoscope but I promise she will give you a big hug every year we are back in Minnesota.
To Maggie Kumbolock, our nurse coordinator for Lyla's transplant and the hundreds of appointments we've had in Minnesota. I literally could not have remained sane the last six months without you. You are the nicest, most caring, best listener, and most organized person I've ever met. You have made every single clinic and hospital visit the best it can be. Thank you for everything you do and most of all for always being there for us.
To all the other hundreds of doctors and nurses Lyla has seen in the past five months at the University of Minnesota - Believe it or not our memories from Lyla's month long stay in the hospital are some of the best. Even when she hit her lowest point, Lyla had a smile on her face every single time the door opened. Thank you for providing outstanding care to our sweet daughter. Even after working a twelve hour shift, you always ensured Lyla was happy and asked if we needed anything before leaving. Your dedication, hard work, and love for your job is so admirable. Although we hope Lyla's hospital visits in the future are minimal, we can't wait for you to see how she grows up be a normal girl.
Finally, to EVERYONE else, thank you for EVERYTHING!!! To our parents for dropping their lives to be a shoulder to cry on and to come to Minnesota and help us survive the last 5 months. We appreciate and love you so much. To the rest of our family and friends, your support is beyond anything we ever imagined. Thank you so much for all the gifts, cards, drawings, and most of all your words of encouragement. Lyla's favorite thing to do already is flip through her binder of drawings and scrapbook explaining everything she's been through and all the love she's received along the way. You have all been a huge part of this crazy roller coaster and have helped us more than you'll ever know. Thank you from the bottom of our heart.
And to the Ronald McDonald House and hundreds of volunteers who have touched our life and made things so much easier in Minneapolis. Your generosity will never be forgotten.
Lyla's journey isn't over but going home is such a big milestone worth celebrating! As you pick up your beverage of choice tonight, please give a cheers to Lyla and many more years ahead of her!