The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Tuesday, December 13, 2011

It's Here!!!

We received a call last night from the doctor telling us that we need to be prepared to begin tomorrow with Natalie. Today the final decision was made after a very thorough meeting was held with doctors from Bone Marrow and Infectious Disease. Natalie will arrive at the hospital at 5:00 am tomorrow and will receive her first dose of chemo by 6:00 AM. Since the call yesterday, I have been so emotional. I couldn't hold back the tears after speaking with the doctor. We have planned and prepared for this moment…even being a week delayed, I still fell apart. I guess it just finally hit me…it’s here. I have been drying my eyes all day. I wasn’t expecting it to be easy… I just don’t think a mother can prepare for such an event, no matter the efforts. I had to remind myself that fear and faith cannot be together.

I will make this post brief; I still need to pack her bags, etc. Speaking of packing, Natalie has some very wonderful things to take with her, thanks to many of you. Her entire body, including her head will be well loved with lots of softness. She has her favorite music set aside to be packed, including her most favorite song ever…”Song of Silence” in Peruvian style, as it is an ancient Inca tune, one Grandma and Grandpa Schellenberg brought back from their mission in Peru. She picked up a new friend today whom is also making the packing list. His name is Cheddar and he is a beautiful nutcracker her Grandmother Fish gave her. However, most importantly Jerome will be washed and ready for another hospital stay. Jerome is a cuddly stuffed elephant that was given to her by her Great Aunt Patsy during one of her earlier more critical hospital stays, since then she has had countless stays and Jerome has been there for all of them.

Thank you to all who have helped us in so many ways, even those whom we have never met. We pray for each of you that you will be blessed and that you will truly feel the love and appreciation we have for you.

Love,
Lisy

12 comments:

  1. Lisy, We are praying for you! Natalie is strong, stronger than you think and even stronger then she thinks! She can do this and so can you all! May God be with you EVERY STEP of the way!

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  2. Lisy, you don't know me but I have been praying for your girls. I KNOW God is watching over them and your family. Angels will be round about you and your daughters to bear you up.

    "DC 84:88 And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

    You will be in our prayers.

    Sincerely, Elisa

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  3. Thinking of you always.

    Love,
    Janis Hardy

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  4. Hold to the faith Lisy. We all love you and your sweet family. We are praying and believe in miracles. Hugs and love to you all.

    Love, Jan

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  5. Lisy, I love you and your family so much. We are praying for you, and wishing there was more we could do. I know this is hard, but you can do this, and so can Natalie. She has her mother's strength and determination.
    Love Heather T.

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  6. We are praying for you even harder today. We love you and are anxious to hear. Good luck today.

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  7. Lisy, best of luck today. We love you all. I wish I could give Natalie a big hug right now. She's such an amazing girl. Our prayers and thoughts are on you today.

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  8. Sweet Lisy! I have been in tears not able to even imagine the weight you and Tyler are carrying. You are in so many prayers sister. Sorry I missed your call, I will be in touch very soon. Love you!!!

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  9. Lisy we are thinking of you all today and wish Natalie all the best.

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  10. It was soooo good to see you and your family the other day. I would not have missed that chance in the world. We are all praying for Natalie and for your family to have strength to endure all you are faced with at this time.
    May the angels be with you
    Loves from Sue and family

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  11. There are so many of us praying for you and your sweet little family right now. You are all in our constant thoughts. Oh, how I wish I could do something to lighten your burdens. We will continue to pray with all our hearts.
    We love you! -Rebecca and family

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  12. Lisy - thank you for sharing all of this with us! I feel like my heart is breaking for you and the girls. We are praying for you all. Keep up your strength and your faith!

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