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.

Saturday, January 7, 2012

Day 17-- ENGRAFTMENT!!!

The nurse came in early and tapped me on the shoulder as I was sleeping and handed me Natalie's lab reports. I quickly scanned over each value, searching for of course her ANC value. It was there -- 500! She has officially engrafted--Hooray!
Because Natalie's donor was a sibling her neutrophil count will continue to rise and should not dip from 500. She has engrafted 5 days sooner than the average transplant using a sibling match donor. The winner of our engraftment bet was Tyler/Grandpa Fish.
Today was great. She spent most of the day laughing and enjoying herself. She watched the Smurfs and played games, and sketched blueberry ice cream cones.
Natalie's mouth is well enough to eat, however, due to the many medications food doesn't taste the same and her desire to eat is minuscule. She will most likely come home on TPN (IV nutrition) and other fluids. It will take some time before food begins to taste good again.
Aunt Amberly is spending the night with her tonight. Tyler and I are home with the boys and Alice. Tomorrow we will pack Matthew's and Blair's bags for Pleasant Grove. Early Monday morning Alice will join Natalie.
I have no idea how we will be able to reason with a 2 year old regarding oral meds with mouth sores. Hmmm.
One last thing, I was thinking much today about how many things could have gone wrong up to this point with Natalie and how little actually did go wrong. We know that many prayers have been heard in our behalf. We have seen the ugly side of medical disappointments many times and know how easy it can happen. We feel so blessed to have many faithful people praying for us....it has made all the difference. Thank You!!
Lisy
Posted by at 8:42 PM

8 comments:

  1. Fitsups.comJanuary 7, 2012 at 11:45 PM

    There is a company in Orem, called Doterra. THey sell essential oils, and they are Certified Theraputical oils. No fillers, no pesticides. The oils are amazing and help many things. I hate thinking about any child suffering, and that is why I am writing you. Basil is used for Mouth ulcers. You can rub the basil on her cheeks, or on reflex points for the mouth. I would use them on my child if I was in your situation. Especially, a 2 yr old that will be hard to reason with the medication like you said. When she is asleep you could rub it on. All the oils are anti-viral, anti-bacterial, and anti-fungal. If you are interested in using the oil, let me know. I will pay for the oil, and you will just need to have someone pick it up. I live out of state. They are located on Center st in Orem. Let me know. My email is tfac2@cccomm.net. I use the oils every night on my 4 & 7 yr old. There is one called On guard that helps boost the immune system and fights viruses. They truly are amazing, and I know they would help Alice heal faster, and maybe less sores. I can't imagine being in your place. So happy that Natalie is feeling better. Good luck with Alice! Take care

    ReplyDelete
  2. AnonymousJanuary 8, 2012 at 10:57 AM

    Hooray Natalie!!! We are so excited for you! You don't even know us (we know your Aunt Heather) but we wanted you to know that we are praying for you and that today, seven of are fasting for you. :)
    The Thomas family (our kids are ages Addie 11, Bryson 11, Caitlin 11, Tanner 8, Emma 8, and Zoe 4) They are praying for you often as well.

    ReplyDelete
  3. dave+candaceJanuary 8, 2012 at 12:21 PM

    So amazing! What great news :)

    ReplyDelete
  4. Jill HeapsJanuary 8, 2012 at 12:21 PM

    Congratulations Natalie!! Emily loved chocolate ice-cream... it seemed to take the metallic taste away. She also loved hot chocolate! I am so happy for you!! I hope you keep getting better quick and your sister does amazing too...she has a great example! Happy engraftment day!

    ReplyDelete
  5. KathyJanuary 8, 2012 at 4:43 PM

    This is so awesome! We are so happy that you are feeling better, Natalie :)

    ReplyDelete
  6. Bryan and Amanda RussJanuary 8, 2012 at 4:57 PM

    HURRAY for Natalie!!! Prayers work Miracles! We are thrilled for you all and keep you all in our prayers. Bryton, our 5 year old, prays for "Natalie's Fish". GOd even hears those prayers. We hope you party hard this weekend :). Your friends in Florida are praying for you all. By the way, I soooo love your turtles. My kids love reptiles and these are amazing!

    ReplyDelete
  7. jfishmagJanuary 8, 2012 at 6:55 PM

    Natalie,

    My 3 year-old, Bailey, loves your turtle drawings. We think you should sell some of your pictures or have them printed on note cards. Bailey especially likes your pink turtles.

    -Jill Fish Magnesen

    ReplyDelete
  8. AmieJanuary 8, 2012 at 9:06 PM

    Wahoo! We are doing the happy dance at the Christensen house for you Natalie! We will still continue to pray for you all though as the road isn't over and will get very difficult for little Alice soon. Best of luck, lots of hugs and prayers!

    ReplyDelete

Subscribe to: Post Comments (Atom)