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Posted 2016-11-20T01:00:17Z

Day +117 - We are home!!!!!!!!

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!

 

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Comments (18)

  • Rick Martindale
    Rick Martindale

    I'm thinking a shot of Pendleton 1910 for me and as a toast to Lyla, you, Steve and the rest of your team.

    4 years ago · Reply
  • Anne Knutson
    Anne Knutson

    My tears are pouring down my cheeks. We love you all and are so proud of your dedication and stamina. I look to the day that I can meet Lyla in person. Love Aunty Annie

    4 years ago · Reply
  • Hayley D
    Hayley D

    Tears! Tears of joy and hope and appreciation and love! She's got the best mommy and daddy in the whole world. I am amazed at all 3 of you for being so tough and so positive and such an inspiration to us all! We love you 3!!

    4 years ago · Reply
  • Casey Seeger
    Casey Seeger

    Helen, once I stop crying, I'm going to crack open a bottle of wine with many cheers to you, Steve and Lyla. I am so amazed at the incredible strength you and Steve and Lyla have shown through all of the ups and downs. I can't imagine having to watch your baby girl go through so much at such a young age. That has to be so hard and heartbreaking. Lyla is one tough girl and she obviously got that from somewhere. You and Steve are truly amazing parents to one precious, amazing little girl. You all are in my thoughts and prayers every day and I believe Lyla is going to keep amazing us for years to come. I look forward to her and Avery having as close of a friendship growing up as you and I did. Love you to the moon and back! ❤

    4 years ago · Reply
  • Debi Peck
    Debi Peck

    I can't even imagine what your life has been like the last 5 months!! My daughter was born 15 weeks early and I thought 98 days in the nicu were hard! But it's amazing what you and your family have done for little Miss Lyla!! I am so happy to here how well she's doing. It breaks my heart when I hear when Lyla isn't doing well or having a hard time with something. But my heart smiles when I see a picture or you say she has done something wonderful or met a milestone. With all my heart I pray that Lyla keeps going on the path she is. We would love when she is able if you would come back to LA Petite to visit. All the best wishes and thinking of you guys everyday!!! 💕

    4 years ago · Reply
  • Christine Boubek
    Christine Boubek

    Arizona is a little brighter today!!! Welcome home!!!

    4 years ago · Reply
  • Benny Joseph
    Benny Joseph

    So happy to hear that you are all back at home. Lyla is so strong and full of life. I have no doubt that she will fight through this. Lyla is so lucky to have such amazing and dedicated parents. You guys are in my thoughts and prayers.

    4 years ago · Reply
  • Malik Hammack
    Malik Hammack

    Very happy to hear you are finally home. We are praying for her health everyday. If there is ever any way our family can help please never hesitate to ask. I am excited to catch up with you back at work soon!

    4 years ago · Reply
  • Kathryn silvet
    Kathryn silvet

    You never cease to amaze me! You are all so strong and courageous. I am so delighted for you all that you are home! Lyla keeping being the little super star that you are. A glass or two will be raised for you and cannot wait to have a glass with your brilliant mummy and daddyxx

    4 years ago · Reply
  • Christine Tibbott
    Christine Tibbott

    Welcome home. What brilliant news to wake up to. Am thrilled and how magical to see Lyla's smile again from her own home. You have all been so brave throughout. Just the best news to start the day with. As always all our love, Christine.

    4 years ago · Reply
  • Rebecca
    Rebecca

    So glad to hear you are all home. I cried as I read this latest update; you and Steve are strong beyond all words. Love and hugs from us Graystons xxx

    4 years ago · Reply
  • Alex zold
    Alex zold

    So happy you guys are finally home!! We are in constant awe of how strong and courageous you all are and can't wait to see you all next year! We love love you all lots and lots xxxxx

    4 years ago · Reply
  • Amanda Geismann
    Amanda Geismann

    So glad you are back home and continue to send love & prayers for all three of you....your love & strength as parents is so inspiring. Love you & cheers to sweet Lyla!!!! xoxoxo

    4 years ago · Reply
  • Melanie Neal McCubbins
    Melanie Neal McCubbins

    oh. My. goodness. Helen. Your beautiful words could not have been more articulate in describing your feelings and the emotions you went through with Lyla and her situation. I was crying the whole time. :) I was crying because it's such a horrible thing to go through, especially for moms, and your strength and optimism is so inspiring. I hope, hope, hope that things get better. I want to hug that sweet little chubby, shirt-less girl in that pix right there and tell her that she can do it!!!! You two are amazing and inspiring as parents and a couple. I hope that all goes well and that you all enjoy your time at home. Happy Thanksgiving!!!! I am sure you are giving lots of thanks for everyone you mentioned in your post, your sweet little smiling girl, and for being back home. And I am grateful I know you, Helen! Loves and hugs!!!! I wish I could do more than just comment, so I will continue to pray for her, I guess. xoxoxoxoxoxoxo

    4 years ago · Reply
  • Julia Burrage
    Julia Burrage

    Lovely to hear that you were able to bring Lyla home at last, brilliant news. Helen, your words are so beautiful and moving and it would be impossible not to be in tears after reading them. Such an emotional l and honest post, you and Steve are so strong and inspirational and little Lyla is just incredible, you must be so proud of how she's handled the last few months. You are all so lucky to have each other. I wish we were nearer so we could be of some help, we think of you guys so often and eagerly await each update, We will be raising a very special beverage to toast a very special little lady! Sending you all so much love and positive energy. You're all amazing, I'm full of admiration for you three xxx😘😘😘💕

    4 years ago · Reply
  • Barb Green
    Barb Green

    Oh my, Helen. Like everyone else, tears are falling because of your beautiful post. With all that you have going on, it is so amazing that you take the time to inform all of your friends and family about your family's journey. Your words are so inspiring, heartfelt, emotional and full of hope; you truly have a gift for love and compassion for others (as well as writing!). Lyla's journey is making a profound difference in so many of us "Lyla lovers", stirring up our hearts and filling them with the same love, hope and joy she brings to you. Love, love, love to you, Steve and Lyla... and all who have helped and supported such a precious family.

    4 years ago · Reply
  • Luke Dollar
    Luke Dollar

    Helen--I am at a loss for words as I read yours. I would like you to know that you and your family, and especially Lyla are in our thoughts and prayers this Thanksgiving. Thank your for sharing Lyla's story so openly--it gives me perspective and fills me with hope. She is so blessed to have you as her Mommy. Sending all the positivity and love we have, from the Dollar Family. Luke, Liz, Alexis and Dominic Xoxoxoxo

    4 years ago · Reply
  • Julie Purschke
    Julie Purschke

    What a beautiful post! We miss you guys here at the RMH, but are thrilled you are home. Nicholas and I LOVE the photo of Lyla on the floor playing at home, what joy! We will continue to hold you all up in prayer for the next several months. It was a blessing getting to know you and sweet Lyla and wish you nothing but the best...love, laughter, sweet memories as a family. May you enjoy a wonderful holiday season and Christmas! Much love, Julie & Nicholas, your RMH friends ❤️

    3 years ago · Reply