No Consensus

The reason it has taken so long to hear from Pittsburgh is because the transplant board could not come to a consensus on what to do with Izzy. They couldn't agree whether a heart-lung transplant would increase her life and help her quality of life. In the end, they left it up to us to decide whether we wanted to push for transplant, see them in clinic to get more information to make our decision, or whether we already had enough information.

After lots of tears, lots of thought, and lots of conversation, our family has decided that transplant is not the right option for Izzy. Our goal for her for her entire life has been to be as normal a kid as she can be. That was why we never homeschooled her and allowed her to be in daycare, when other people said we were crazy. She loves people and she loves interaction. We've never wanted to hide her away because we've never been promised it would extend her life and we knew, even if it did extend her life a little, she wouldn't be happy. We want Izzy to be happy and do the things she wants to do for as long as she can.

Heart-lung transplant is not the same as other transplants, even just a heart. It is not considered a fix or even a huge life extender. It is palliative even in the most obvious cases where transplant is suggested. For those cases, half of the kids die within 3 years and the other half only live about 5. Would Izzy be a lucky one? We don't know, but she has a lot going against her. Her immune system and DiGeorge's Syndrome are indications against transplant. Kids with her specific heart defects also do worse than others who get heart-lung transplant. In the end, the doctors can't agree whether transplant is recommended for Izzy, so she is at 50/50 going into a procedure that is 50/50 to start. The odds just are not in her favor. Why would trade her life now for those odds? Izzy wants to go to kindergarten. She wants to learn to read. She has more music to dance to.

When we discussed this with the kids, Phineas decided we should bring Papa, my dad, in to help Izzy stay comfortable. My dad is a hospice nurse and Phin knows he helps people who are dieing be comfortable and that is what Phin wants for his sister. If there are no options to keep Izzy with us, Phin wants her not to suffer. That kid is so amazing. He is going to do wonderful things to help the world. I know it. He will take his sister with him the entire way.

Phin didn't realize it, but we did start the process for Izzy to receive hospice care this week. The nurse came out Monday to explain the program to us. A child qualifies for hospice services if their prognosis is that they will not live to be an adult. (In adults, it is usually that the patient will not live more than 6 months.) Even before we heard from Pittsburgh, we decided to move forward with the hospice care. They will help us with what we need for her medically and build a relationship with us before Izzy declines further. And they said they will help us create memories. As Izzy sobbed this morning from thinking about dieing, learning that hospice will be working with us comforted her and Phin.

We have chosen to make the most of Izzy's final years and hope that she beats the odds against her. If anyone can do it, she can. She has surprised all of us before.

47 Message(s) from Carepages

Posted May 19, 2013 4:31pm

by Nicole Hoagland

Just catching up on your updates! So many hard decisions! I think it's great giving izzy and normal as possible life. That's our goal always as well. Have you guys done a make a wish yet! We just did Lorelei's and it was amazing! Good luck, hang in there and as u know live life to the fullest that's all any of us can do. Heart Hugs:)

Posted May 4, 2013 1:27am

by JOY K

My thoughts and prayers are with you. I am sorry that Transplant is not a good option, but I believe you have Izzy's best interest at all times! She will defy odds, she already has... many heart hugs for your little Rose from this mommy of another little Rose! Joy
cp sillyjilly07

Posted May 3, 2013 10:08pm

by Stefenie Jacks

Crying.....absolutely crying my dear friend. Just reading these words has left me heartbroken that this is where your journey has lead you. I pray that you get longer with Izzy and I will pray every single night that you get much more time.
I have been so blessed to have been able to get to know you through the journey of our special kiddos and I have watched Izzy grow into this beautifully precious little girl that makes me smile every time I see her pictures Mel. {{{HUG}}}
Please let me know if there is anything that I can do for you guys. <3 your special family so much!

Posted Apr 23, 2013 9:39am

by Jean Toomey

YOU ARE ALWAYS IN OUR HEARTS AND PRAYERS AND YOUR STRENGTH NEVER CEASES TO AMAZE ME. GOD BLESS YOU. AUNT JEAN & UNCLE DON

Posted Apr 22, 2013 9:57am

by Rachel Kain

I am in tears, because how can I not be. I know that whatever time Izzy has left will be a gift for all of you. What a terrible decision to have to make, but you are all so thoughtful and wise and loving. I am blessed to know you. Please know that you are always held close in my heart. And that I am here whenever you need an ear or a shoulder. Hugs to all of you.

Posted Apr 21, 2013 8:45pm

by Donna Telly

My heart aches for all of you. I respect your decisions as difficult as it must be. Know that Izzy and all of you will be in good hands. Many hugs and prayers are with you.

Posted Apr 20, 2013 3:35pm

by Teresa Conley

Many, many hugs to your family!!!
It is heartbreaking that such decisions have to be made for anyone, but especially for a child. :(
Izzy is such a little fighter! Keep it up Izzy! Beat those odds & keep dancing!!! :)
I hope hospice will bring comfort to you all. Keep making memories and keep up the great work of giving Izzy the most normal, fun life possible.
(((Hugs)))

Posted Apr 20, 2013 2:29pm

by Marti VanRavenswaay

Well, I really tried, but couldn't hold back the tears. UGH. I've loved your precious children from the first time I read on Izzy's care page. Izzy is a little doll and I really want one LIKE her!!! She's such a live wire -- and appreciates life like few do. MAKE THOSE MEMORIES!!! And Phineas -- what an amazing young man! You guys as parents have done an amazing job with your children -- they ARE amazing! Prayers continue, as always.
MEMORIES

Posted Apr 20, 2013 12:36pm

by Andrea Nicholson

I actually read this last night, while Kevin and I were on our way out for a date. I stopped reading and choked back the tears. Over dinner, we discussed that Ben and I are going to come out and visit you all for a long weekend this summer. I will coordinate with Freddy- and can stay whereever. Most people want to go to the shore on summer vacation. I am coming to Detroit. It will be great for the kids to meet and make memories. And way better than the jersey shore.....
Love you, Andrea

Posted Apr 20, 2013 9:32am

by Teresa Falzarano

I can't imagine the strength it takes to make this type of decision for your child. You guys are awesome! Know that you are ALWAYS in my thoughts and prayers. Love & hugs
Aunt Teresa

Posted Apr 20, 2013 5:37am

by Dennis Egan

I wish I had words to offer you comfort at such a difficult time...all I have is tears and prayers.
As a parent this just breaks my heart.
Shannon

Posted Apr 20, 2013 12:17am

by Linelle Giles

Such a heart wrenching decision but obviously made with a lot of thought and love. She is a remarkable girl with an amazing family. I <3 izzy!

Posted Apr 19, 2013 10:36pm

by Mary Reinard

My thoughts and prayers are with you. God will be there to help and put you all in the right path of life . God bless all of you

Posted Apr 19, 2013 9:42pm

by Jennifer Dougherty

Praying for you all. Your desire to give Izzy the best quality of life you can is a true testament to your love for her.
Jen - A Heart Mom you have never met

Posted Apr 19, 2013 6:39pm

by Trisha King

Prayers and love... you are the best parents for her and once again you have shown that.

Posted Apr 19, 2013 5:02pm

by June Spriggs

Dance Izzy Dance!! If you can possibly work it out please come and stay with us for a few days. We will put you up in one of our Suites. There are lots of fun things to do here with the kids Paddle boat, dune rides, duck boat, the beach, parks, the board walk, fishing etc, and lots of great restaurants, and other distractions for mom & dad while we entertain the kids. We would love to see you and create some of those happy memories. Lots of love, June & David

Posted Apr 19, 2013 3:26pm

by Amy St.Clair

I am reading your update with tear filled eyes. I believe in my heart this is the right decision for Izzy, but it had to be your family's decision so I did not say anything or offer advice. I did not want to influence you either way.

Although Madilynn was never approved for transplant, we did discuss the option with the transplant team at St.Louis Children's Hospital. Their opinion was the same as for Izzy. The team was split on yes or no and decided to decline her for the same reasons you have listed. You are right, pulmonary atresia kids have the lowest survival rates. And it is heart breaking news.

You are an incredible, loving family. You have amazing children. Phinn and Taylor have so much in common...wisdom beyond their years. And I strongly believe their sisters will make them better men, better fathers.

I wish I could hug you right now! How far is Michigan???

Many hugs,
Amy St.Clair

Posted Apr 19, 2013 3:03pm

by Elaine Blaser

My heart goes out to Izzy,you and your family.
Prayers prayers and more prayers.
Love Elaine

Posted Apr 19, 2013 2:18pm

by Taffy Graessle

I am in complete awe of all of you Melonie and Dale, Phin and beautiful Izzy! Lots of love, hope and prayers being sent your way! God be with all of you!
Love, Aunt Taffy

Posted Apr 19, 2013 2:16pm

by Heather Steingruebl

You are amazing, wonderful parents. Your grace and courage as you give Izzy the best and brightest days possible fills my heart and inspires me do better at my own parenting journey. All of my love and good thoughts are headed your way-I wish I could be there in person to give you a hug and sit just quietly and smell the flowers.

Posted Apr 19, 2013 1:45pm

by Liz Shaw

you are all very brave. Keeping you in my prayers

Posted Apr 19, 2013 1:00pm

by Mary Elizabeth Brown

(((Hugs)))) what a little man Phin is. So wise and caring. Such hard, such crappy decisions, but so thoughtfully planned. You all remain in my thoughts and prayers.
And we are choosing a date for drinks STAT!!

Posted Apr 19, 2013 12:11pm

by Janet Zingen

Difficult choices but it is a wonderful you are thinking of all that can be done to make Izzy's life a great one. Prayers and hugs to all of you.

Posted Apr 19, 2013 11:22am

by Laura Hermann

Prayers to all of you. Izzy has lots of people pulling for her. I think about her every day as do so many others. Hugs

Posted Apr 19, 2013 11:21am

by Jennifer Abler

My wishes for for fun filled and peaceful days are with all of you. You are always thought of often. You're amazing parents of an amazing little girl and a remarkable son. Love to you all!

Posted Apr 19, 2013 11:11am

by Bonnie Hunter

Yes, let Izzy dance and enjoy her life! Phin is destined for great things. With all that you have going on in your life, you are one special family!
Best,
Bonnie

Posted Apr 19, 2013 11:09am

by Amy Fleck

I know there are no words that will be comforting; I wish I had some. I am thinking of all of you and sending good thoughts and prayers. I don't think anyone could be doing a better job of selflessly acting in Izzy (and Phin's) best interests. Your children could certainly not be any more loved or well cared for. xoxo

Posted Apr 19, 2013 11:09am

by Kristin Farris

No words can explain the feelings as I read this post. My thoughts, hugs and prayers go out to you, Izzy and your family. What an awesome mom for having Izzy experience so much life! Thank you for your openess with all of your posts. Blessings, Kristin cp: EthanNicholas

Posted Apr 19, 2013 11:09am

by Matthew Bredeweg

I am so sorry for you and Izzy and your family. This is not at all fair. We will be thinking of you and wishing you the best.

Posted Apr 19, 2013 11:05am

by Diana Bryant

You bet Izzy has a lot more music to dance to. She is a remakable young lady. You are also right, if anyone can beat the odds, Izzy can. I have never met this beautiful little girl, only thru your pictures and your posts. Just the thought of her leaving this earth makes me very sad. God Bless Izzy and her brother Phinn what a wonderful brother she has.
Diana Bryant

Posted Apr 19, 2013 11:02am

by Mandy Welsh

Praying so hard for you all!!! Love and hugs!!!!

Posted Apr 19, 2013 11:01am

by Bridgette Rosek

I can't imagine how difficult of a decision this was for your family but I am sure it is the right one, you have done the best for Izzy and given her a wonderful life so far. We wish you guys the best.

Posted Apr 19, 2013 10:55am

by Erica Fonck

Keeping you all close to our hearts...can't imagine how hard this all has been and continues to be.....sending love and strength!

Posted Apr 19, 2013 10:40am

by Mitzi LaBarge

Izzy has the best, loving and caring parents on her side making sure she lives her life to the fullest everyday, that is a decision you have already made. Keeping you all in my heart and prayers!

Posted Apr 19, 2013 10:39am

by Merry Donn (Gastambide)

Thinking of you and your family...Merry from Make-A-Wish

Posted Apr 19, 2013 10:39am

by Kelly Kalis

I wish had words....I wish I could be there right now and give you a hug! I will continue to pray for Izzy's comfort and happiness. Phin is as amazing as his sister and I suspect it has to do with their brave parents. Praying for all of you during the road ahead.

Posted Apr 19, 2013 10:36am

by Kelly Curtis

I can't even imagine all of the emotions that you guys have been dealing with the last few months. I'm glad that you finally heard from them, though. I hate that you have to make these choices, but you show such strength and grace!
Always thinking about Izzy!
Kelly

Posted Apr 19, 2013 10:34am

by Paula Wodzisz

What an unimaginable decision you are making and my heart breaks for how hard it had to be to think about making this decision. Phin is amazing and you are right...he is going to change the world. I will be keeping you all in my thoughts and prayers...God Bless.

Posted Apr 19, 2013 10:33am

by Wendy Miller

Sending hugs your way.

Posted Apr 19, 2013 10:31am

by Cindy Taylor

This news brought tears to my eyes and a rip down my heart. I have prayed for Izzy and you all, and I will continue to pray without ceasing as your family continues together to enjoy Izzy's precious life with you for as long as the Giver of Life allows. Praying for many years, that even hospice caregivers will be surprised. That said, I appreciate the brave decision you made and believe it to be the best. You're very wise, Mel, and you're a wonderful mom, from what I have seen.
Love you,
Cindy

Posted Apr 19, 2013 10:31am

by Billie Keith

I have no words just lots of tears at what an amazing blessing Izzy is to such an amazing family. Prayers for all of you as you live your lives with love, hope and courage. ♥

Posted Apr 19, 2013 10:30am

by Jonna Ellis

Oh Sweet Izzy, you are one strong amazing little girl who have ALOT of people that think of you daily & want you to be comfortable. I work with Papa Rick and we talk about you. Hugs & Kisses are sent your way sweetie- Jonna

Posted Apr 19, 2013 10:30am

by Holly Smith

Oh, my god, Melonie. I can't imagine.
Holly

Posted Apr 19, 2013 10:28am

by Linda Koss

Bless your hearts - keeping you all close in prayer. What an amazing brother Izzy has - you are all such an inspiration. God bless.