Nov 1, 2011

{fanconi anemia}


thats what our brave little son has.
its complicated.
its super uncommon, so there isn't an overabundance of research or awareness.
& thats why we are talking about it, now.

because our son has it & even the fact that the doctors were able to identify it this early is really a miracle in itself. our geneticist had seen a case of it over 10 years ago & saw similarities with isaac.
a lot of doctors don't even know what it is, or have never seen it before.
but he asked that isaac be tested for it & it all came back positive.

i know most of you aren't doctors, & i'm not either. i've just been living in a hospital for the last month. but if you only know two sentences about FA, this is what it is:

fanconi anemia is a rare blood disorder. it often doesn't show itself, or begin to affect its patients until school age - but everything is arbitrary. it could be much sooner, or possibly a bit later. the result is bone marrow failure {the inability to produce blood cells}. The only thing that can be done for this is a bone marrow transfusion. & also because of the problem with blood cells, FA kids are at a much much higher risk of developing leukemia or other cancers, too. FA also can come with its list of anomalies, such as kidney troubles, slow or stunted growth, missing thumbs, an imperforate anus - all things isaac has. 

it absolutely broke my heart to hear this about our boy.
i was angry & hurt. daniel wasn't there with me. it was all i could do to make it to my car before i curled up & cried. i had thought the worst was {possibly} over & this news just took my breath away.
its still hard & i would still possibly cry talking to you about it - but since the initial news, our hearts have changed.

it breaks my heart for our little boy - & honestly, it hurt too, because it broke the dream i had of this perfect little family - perfect as in not having to do with doctors & hospitals & transfusions & cancer...thats not apart of anyones plan when they start thinking about a family. & it definitely wasn't apart of mine.

but then i started thinking more about it & daniel talked me thru a lot & we prayed.
& so maybe isaac won't be 'guaranteed' the long & simple life i wanted for him. but then, no one really is. & in the meantime we can't consume ourselves with what could happen next year, or in five years, or ten because daniel & i aren't guaranteed that time, either.

we are definitely going to fight this with everything we have. we're going to study our brains out & email doctors & other families & we're going to pray every day that God heals our boy. but we are also going to just enjoy him each day for as long as we're all together. however long that is, knowing that he is the perfect boy for us & we're the perfect parents for him. & that the situation hurts - but we won't let it steal our joy in isaac or our joy in life.

this is kind of heavy.
& honestly, this is way worse than anything we had even expected. we had debated as to whether we wanted to share this with people on a really wide scale. but FA doesn't limit isaac or us. it doesn't change the wonderful plans God has for this boy & we definitely still are in need of prayer & we want people to know how they can pray for isaac.

this is going to be a long journey for the three of us & there are about a thousand questions we have, but we'll make it through & we'll keep laughing & loving each other & our son & our Lord.

much love to all of our friends - to the ones we've met & also the one's we haven't.


"Look at the birds of the air: they neither sow nor reap nor gather into barns, & yet your heavenly Father feeds them. Are you not of more value than they? & which of you by being anxious can add one cubit to his span of life?….Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day"


Matthew 10:26-27;34

62 comments:

  1. Mindy, I am so sorry to hear this, but I am so encouraged by your strength and faithfulness to the Lord during this time. I don't even know you or your family very well but I love all three of you and will be praying for you and Isaac during this time.

    ReplyDelete
  2. http://www.madisonsfoundation.org/index.php/component/option,com_chronocontact/chronoformname,connecting_parents/Itemid,79/

    I used this site for Peyton's diagnosis, and I just checked, it lists FA!

    I do not know how many parents have signed up whose children have FA but it might be a start in the right direction.

    I'm playing catch up on your blog because I honestly don't have that much free time. I am glad that you have a diagnosis so early, it's a catch 22, though. Some people crave knowing the name for it (me) and others prefer to tip toe around it.

    Just because it says he may have x, y and/or z because of it, does not mean that he EVER will. It just means that it could happen, but the same x, y, z could happen to millions of other kids without FA.

    I would start looking into things like SSI (I do not know your income level) and/or medicaid waivers. As I'm sure you are finding out sick babies=expensive babies.

    It's something I wish we would have looked into sooner before being slammed with tons of stuff our regular insurance wouldn't cover, and procedure after procedure.

    You are going to be a great mother & I have no doubt that your little boy will meet his full potential (and then some!) with you & Daniel by his side.

    ReplyDelete
  3. Mindy. Im so unbelievably sorry to hear this. I will be praying constantly for Isaac. I know that God is bigger than anything and He is in full control. I am believing for the best for your little boy! Your positive attitude inspires me so much! I love you and Daniel both!

    ReplyDelete
  4. Mindy, I don't know how I would be handling this if I were in you shoes. Know that the way you are reacting to all this, is so encouraging. A lot of people would only look for the negative but you guys choose to believe God is above all this and his hand is on the situation. No matter what happens, I know the Lord will not give you anything you cant handle. I will be praying for you guys and your little warrior :)

    -Dave

    ReplyDelete
  5. This saddened me to read Mindy, but I appreciate you sharing everything so we know a little more in depth what to pray for. I will continue to pray for healing according to God's will and strength for both you and your hubby. You guys a beautiful example of Christ's love. You encourage me everytime I read your blog. And take what Just a Tip said to heart, just because he has FA does not mean he will get those other things. I have a friend that was diagnosed as a young adult 24 with Leukemia out of the blue, it hit her that quick. I thank God that she is 28 now and in remission! God is good! He is able. XO

    ReplyDelete
  6. Mindy & Daniel, i am so sorry to hear this news. I have been reading your blog for a while now and it saddened my heart to see this. I find you guys such an example of followers of Christ and that you're trusting in Him throughout this!
    Remember that he is a kind, caring and faithful God, full of grace and love and in complete control of everything. I am praying for your little man and for you two, that you look to Him for strength and comfort.
    In church on Sunday, i heard a knew song by Matt Redman called '10,000 Reasons (Bless The Lord)' and it has been on my mind ever since. The lyrics show you God's kindness toward us and when you're struggling, He will ALWAYS be there for you. I am praying for you all. He loves you. 'Trust in the Lord with all your heart, and do not leanon your own understanding.' Proverbs 3:5 xxx

    ReplyDelete
  7. I will continue to pray for you, Daniel and your sweet baby boy.
    God Bless,
    Jenny

    ReplyDelete
  8. My heart hurts for you both with this news. But your spirit in the midst of this trial is so encouraging. Praying for healing for Isaac and strength for you two.

    ReplyDelete
  9. Just found your blog the other day. Congratulations on becoming a mom to adorable Isaac. I'm sure you will have your ups and downs but keep that knowledge that God is sovereign in the forefront of your mind. So glad that you started this journey with that in mind.

    I think of Ephesians 2:10 - For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.

    God planned this journey for Isaac before the beginning of time. He planned it to be a part of your journey too. Therefore he'll give you every resource you need to finish it well. And the maturity that it will bring into your life will astound you. I'll pray that you maintain such an awesome position of submission before God. Good job guys.

    ReplyDelete
  10. Dear Isaac,
    It hurts my heart to know that you have been affected with this disease but I also know that you could not have better parents to care for you and hold you and simply love you. Your amazing parents, they have touched my heart in so many ways. Know that you are loved by not only your parents but by the hundreds of people who read this blog. And that above all else, God is watching over you, every second of every day. Get better sweet boy.
    Love,
    Carrie

    ReplyDelete
  11. Dear Mindy...thank you for sharing something so very personal. We will continue to pray for you. I am sobered and heartened by your maturity. You and Daniel are indeed the perfect parents for sweet Isaac. You are loved and not alone. Hugs to you all and kisses for that sweet baby. With His love and mine, Nancy Brimberry

    ReplyDelete
  12. Thank you for sharing your story Mindy. You are a strong momma and Isaac is very lucky to have you. He is precious.

    ReplyDelete
  13. i'm so very sorry, mindy.

    you are in my daily prayers. with God, all things are possible.

    ReplyDelete
  14. Love you guys. We are praying for you. It is amazing what God gives you grace to handle, and so kind of Him to give you each other to handle it together.
    the Seavers

    ReplyDelete
  15. mindy, my heart goes out to you and your little family. i will pray for healing and peace. your strength is beautiful..

    ReplyDelete
  16. Mindy my heart breaks for you and Daniel. I can't even begin to understand what you're going through. I know this is not how you envisioned your lives together and as a family but I also know that you have an amazing love for each other and this little guy that will keep you going. You both are wonderful parents, God knew what he was doing giving Isaac to you to take care of. I will be praying as much as I can for you all.

    ReplyDelete
  17. I don't know you or your family, but I am praying for you and Isaac specifically tonight (and have in days past). Entrusting your souls to a faithful Creator. (1 pet 4:19)
    - ally

    ReplyDelete
  18. I am so sorry to hear this news. I know it has to be hard to have another ball drop just as you are learning to cope with the status quo, as it is. I have been, and will absolutely continue to pray for the two of you, and Isaac. I know he already has more love and support than many kids ever will! Our God is a God of miracles, and while Isaac's life is already it's own little miracle, I fully believe that healing can continue. I will pray that you and Daniel will be filled with the most profound peace and clarity and that Isaac's doctors will be overrunning with wisdom.

    ReplyDelete
  19. We love you, Mindy. You are doing so well. "Let your light so shine before men, that they may see your good works and glorify your Father in Heaven." That's what your doing. Please hug Daniel for us and kiss that sweet baby boy seven times from the Morrisons.

    ReplyDelete
  20. thank you for sharing your story and trusting the Father of the universe. days will be difficult, He will never fail. He will never leave your family and uses all things to give us another picture of His Son, Jesus.

    ReplyDelete
  21. praying for you and your family. i'm so sorry.

    ReplyDelete
  22. your strength and joy is impossibly amazing and completely awe-inspiring. there are, no doubt, probably a million things you are thinking and emotions you are feeling. know that Jesus felt every one of them and can walk through this time with you. prayers will be never ceasing for isaac and you. you are loved. by those you know and those you don't.

    ReplyDelete
  23. the Lord has blessed you and your husband as the caretakers of this sweet child and i can see why, you have so much strength and trust in Him! it is so inspiring.

    ReplyDelete
  24. Hi Mindy, Daniel and baby Isaac. Under normal circumstances I would not be so presumptive but these are not normal circumstances and I am lead to share a friend of mines story with you. Her little angel child was also diagnosed with FA and a whole host of other problems when he was born prem. Gideon is almost three and although it is a constant battle to keep him healthy and give him a normal life God is constant in His love and His grace.
    I know things are crazy for you guys right now and time is a precious commodity but when you have a moment check out Gideon's website:

    http://gidionreuben.weebly.com/gidions-story.html

    I pray it will give you some sense of comfort to read their story and see what an awesome and mighty God we serve.

    Isaac and both of you are in my prayers. I think of you often and can only imagine what this time in your life must feel like. I do however, want to say that your strength and your dedication to your "little man" is awe-inspiring and that I know God has you in the palm of His hand.
    Lots of love Lisa from South Africa

    ReplyDelete
  25. "By faith they lived-- it was their comfort, their guide, their motive and their support; and in the same spiritual grace, they died, ending their life-song in the sweet strain which they had so long continued. They didn't die resting in the flesh or upon their own attainments; they made no advance from their first way of acceptance with God, but held to the way of faith to the end. Faith as precious to die by as to live by."

    ~Charles Spurgeon, Morning and Evening May 2

    ReplyDelete
  26. The Lord takes pleasure in those who fear Him...in those who put their hope in His steadfast love. The name of the Lord is a strong tower. The righteous run to it and are safe. My heart was greatly encouraged to continue trusting the Lord today as I read your post. Your steadfast trust in the Lord's care is already producing fruit! We will be fervent in prayer for you ...beseeching the God of the impossible! Love you-

    ReplyDelete
  27. My heart aches for your family. Praying.

    ReplyDelete
  28. Mindy, You are a beautiful mommy with an even more beautiful heart...thanks for your great love for my son and sweet grandson. Mom C
    Ps 27:13

    ReplyDelete
  29. I'm one of those friends you haven't met YET! Another FA mom.....welcome to the FAMily! www.fanconi.org is the main website! Contact Teresa, 888-326-2664 or teresa@fanconi.org for information about the FAmily egroup. There are other FAmilies in NC, Lackey in Charlotte, Pepper close by and another one in the eastern part.. Issac is beautiful and reminds me so much of my son..... Hang in there and we'll be praying for you and your family...Blessings and Bear Hugs!

    ReplyDelete
  30. Mindy, My son was diagnosed in 2002 with FA. We also live here in Charlotte. I would the oppurtunity to talk with you more and offer my support. My email is willpowerfund@yahoo.com. FA is a life changing disease, but you are not in this alone. You son is precious! I will keep him in my prayers!

    ReplyDelete
  31. I have been reading your blog for a while but have never commented, your faith is very encouraging, just wanted you to know that you and your family are in my prayers.

    ReplyDelete
  32. Your baby boy will be in my prayers. <3

    ReplyDelete
  33. I can just see so clearly from all your posts how God is working so deeply in this situation. I know you may not feel it but that doesn't change the Power, the existence the strength of the Lord. He created you , Daniel, and Isaac without any mistakes. His plans for Isaac were established long before you and Daniel even met. And that in itself is beautiful, the care of God for your family is so massive...even on days where it doesn't feel that way. Your family is such an encouragement to me, and I am praying for you all.
    May God bless you.and Keep you.

    -Lilia

    ReplyDelete
  34. Daniel & Mindy...
    Thank you so much for sharing this even though I can't imagine the amount of pain you guys are feeling. I'm praying for little Isaac and also for the two of you. I pray God continues to supply you with supernatural strength. You have a lot of people supporting you and believing for you.

    Love, Brooke McClellan

    ReplyDelete
  35. Thank you for sharing this and allowing us to pray for you. I am so sorry to hear of Isaac's diagnosis, but praise God that you can begin to move forward. Mindy and Daniel, your strength astounds me. I think it's beautiful that even with this bitter news, you have found the sweetness right along side, that you have each other and that God will never leave you. I will be praying for Isaac and for both of you as you parent this precious little boy. God is bigger than this diagnosis and He loves you all so very much. You are not alone in this.

    ReplyDelete
  36. i'm so happy to read all the support you lovelies have all around the world!
    you are being so brave and generous with all human kind by sharing all that's going on in your life, i mean it from the bottom of my heart. I keep my family updated about your family and we've discussed plenty of times about you posting on the web about this so private and intimate and painful things you're going through. Most people'd be scared to share, and i can't even imagine hoy painful it must be to write this posts, but all of us who got to know about you, now or a year ago, we are so proud and thankful and inspired by you strenght and faith and love... How can someone even question the fact that you post this love-filled posts? It's so so amazing to know you, adorable people. And i'm so happy to see how many families with the fanconi anemia problem came here to give you support. Man, whatever the plans God has for you, i can't get over the thankful feelings i have, although this is sad and hard. Everything will be just the way it has to be, and i'm really really thankful that you are letting us learn this lesson with you too.

    Thanks again,
    Renata.

    ReplyDelete
  37. Many prayers for you and your little one. Someone once told me something very powerful
    "faith does not deny reality it just says that this reality is not final"
    Revelations 12:11 "They overcame him (satan) by the blood of the lamb and the word of their testimony" She sharing what God is doing in your life it defeats the one who comes to kill, steal, and destroy. John 10:10

    ReplyDelete
  38. Mindy and Daniel thanks so much for sharing so honestly and openly about Isaac and your struggles and your strong and mature Godly faith. We love your family and will continue to pray daily for all of y'all. Rob and Susan Veerman

    ReplyDelete
  39. I have your sons name on my desk and will be praying for you all!

    ReplyDelete
  40. Daniel and Mindy. I just prayed for you both and little Isaac yesterday morning. God keeps you both in my heart and on my mind constantly. I texted Wendy yesterday to let her know that we continually pray. There are no words. The Vail family will continue to pray. Your faith and love for the Lord has been such an encouragement. If you get a brief moment, please read Isaiah 43:1-3. A constant reminder that God is holding the 3 of you so close and will never leave you, no matter what you face.

    ReplyDelete
  41. I know you all don't know me... but I am one of Michelle Wingate's good friends, and a nurse. I have been praying for you all and will continue to lift up your son. Your honesty and faith are beautiful. Do not lose heart! Please know that there are friends, family, and those you have not met (like me) supporting you.

    In Him,
    Sarah Calvert

    ReplyDelete
  42. Praying for you and Daniel and sweet Isaac. Praying the Lord gives you rest, wisdom and strength in the days ahead!
    In love, Emily Skolrood

    ReplyDelete
  43. Mindy and Daniel, you are both so amazing.
    thank you for sharing your life with me. issac is lucky to have you both in his life, the world needs more strong examples such as yourselves to raise the children of the future.

    ReplyDelete
  44. Mindy, so very sorry to read this news about Issac. Please know that I am praying for him and for you and Daniel also. It is obvious that Issac gets his strength and courage from his parents. Every day I find myself falling more in love with little Issac . . . cheering for him . . . praying for him. He is so inspiring and compelling. You are a very gifted writer. The way you have dealt with this news draws all of us closer to the Lord who makes no mistakes. You are so young to have to bear such issues, but I still feel that you three are called to greatness . . . a ministry you are just now discovering. There are so many young couples hurting . . . hurting because of their own issues . . . hurting with you and for you. Thank you for sharing Issac and his story with us. I am continuing to pray as his life story unfolds. I so look forward to your posts and especially enjoy the pictures of him and your family. Wish I could hug you. I, too, sat in a hospital room by myself and was told very difficult news about my newborn 30 years ago. So difficult to deal with the news and the doctors etc. saying we must do this and that. . . hormones going crazy from giving birth and then there are all the really big needles, tubes and new "medical vocabulary". You are coping so well. You are loved around the world by friends you've yet to meet and especially here in Chattanooga.

    ReplyDelete
  45. Mindy,

    Your blog is so inspiring and uplifting. I'm sorry for the news that you received about your son. My niece was diagnosed with Cystic Fibrosis when she was 6 months old and I remember feeling like the world was going to stop spinning and not knowing how we were going to make it but God was always there. Times will get hard but you have the Lord to hold your hand and walk you through. I will keep you in my prayers.

    ReplyDelete
  46. Truly, you three never cease to amaze and inspire us. I treasure that scripture also... I think Jesus knew just how much we as human beings stressed, worried, experienced difficulties. And yet, nothing is beyond our loving Father's ability to restore, guide and comfort us through. We are sending special prayers and blessings for you today xx

    ReplyDelete
  47. My husband and I will continue to pray for Isaac, as well as you and Daniel. Isaac is so blessed to have such wonderful parents as you two.

    ReplyDelete
  48. I don't know you personally but was forwarded your blog by a friend of mine. I am praying for your little boy and your family!

    You can put a pin in Concord NC on your project map for me. (just north of Charlotte)

    God's blessing and strength to you all...

    ReplyDelete
  49. Mindy, my husband and I are good friends with your extended family here in Ohio. I wanted to let you know that you are being prayed for in Beavercreek, Springfield, Fairborn, and Kettering, OH. God give you strength and peace through these hard times! Isaac is a strong boy and blessed to have you and Daniel as parents.

    ReplyDelete
  50. Daniel & Mindy ~ We have just received your beautifully touching blog from our daughter, Kate Sullivan (she works at Lowes). Please know across many miles you are in our thoughts and prayers. Your precious baby Issac is so blessed to have you as his wonderful parents! I'll be eager to keep up with you and baby Issac in the coming days. Blessings to you three!

    Nancy Sullivan ~ St. Marcellin, France

    ReplyDelete
  51. Mindy,
    I stumbled upon your blog and have only been reading it for a short time now. I read through most of the entries about Isaac's birth at the same time and found myself in tears and so struck...I do not know you, but I couldn't believe the extordinary amount of strength your entries displayed. It is so obvious that you both have a peace that transcends all understanding, & I think even the fact that you were able to write this entry shows that. It truly is in our weakness when we are the most strong, and you have exemplified that for me. Thank you so much for posting through it all. Your family is in my prayers. Ps 145:15-16 "...you give them their food in due season..." I pray that you will continually draw strength from the God who faithfully opens his hands to provide every morning.

    ReplyDelete
  52. The Murphys from Gaithersburg MD are praying for your little boy.

    ReplyDelete
  53. so sorry.
    hoping that you find reasons to laugh with your boy, to be joyful in everday life and much more strength in the lord.

    leslie

    ReplyDelete
  54. That picture is stunning. It's good to know you're facing the news with God on your minds and in your hearts. Praying for Isaac and answers for your family.

    ReplyDelete
  55. oh Mindy, I have read this post over and over again and each time I tear up. I didn't think my heart could be so sad for people I've never even met, but it is. I will certainly continue to pray for little Isaac and for the Lord to strengthen you and Daniel as you face whatever the future holds for your family. Thankfully, when all is said and done, we can trust that whatever happens, He is sovereign, He is good and His grace is sufficient.

    ReplyDelete
  56. Mindy and Daniel,

    A nun in Catholic school once told me God only gives his toughest assignments to his best students. I so believe this is true of your little boy. My cousin has a little girl with mental disabilities and health problems. Her path hasn't been easy, but she has brought nothing but joy to her family. I know Isaac will do the same.

    ReplyDelete
  57. I am Cristina, a 22 year old girl from Madrid, Spain, who reads your blog once in a while. I don't know you or your husband but I am sure you are both as adorable as you seem to be through this blog. When I read you were going to have a baby I felt really pleased, because babies are always the best new ever. And now I have read this I am still really happy, because you baby came, and that's still the greatest new. Life might be harder for Isaac, but he has the best parents he could ever have and he is going to be loved to a point everything is going to be easier for him. Having kids is always a lot of work and responsability, you are going to need an extra amount of courage and energy. But your love for him is making you strong enough to do it, and it will always lead you in the hard moments. All my best for the three of you.
    I will also pray for you and I send you a lot of energy from Spain.
    Isaac is in the best hands he could be :)

    ReplyDelete
  58. today's sermon at my church was about giving thanks in all things . . . especially the hardest things. how in our lives with Christ we're to see situations thru His eyes and not the world's. how seemingly hopeless circumstances because opportunities for Him to work in our lives. giving thanks, no matter how difficult and frightening the circumstances, allows us to recognize that God sees beyond our present and acknowledges that He has our best . . . thinking and praying for your sweet family!

    ReplyDelete
  59. Dear Mindy,

    I don't know you or your family at all, and I honestly don't remember how I stumbled upon your blog, but, it certainly has been life-changing. I know that there's not much I can say to help you through these difficult times but I've been reading the book of Job and there's a verse that really struck a note when I read your post. "But if it were I, I would appeal to God; I would lay my cause before him. He performs wonders that cannot be fathomed, miracles that cannot be counted.... Blessed is the man whom God corrects; so do not despise the discipline of the Almighty. For he wounds, but he also binds up; he injures, but his hands also heal." Job 5:8-9,17-18. I hope that this might help, and I also want you to know that you are certainly in my prayers. I wish you all the best from the bottom of my heart.

    Lots of love,

    Nataly.

    Charlotte, NC.

    ReplyDelete
  60. I was born with a rare defect (which was at that time, over 40 years ago) and spent more days in the hospitals, and at home in bed than outside playing with the kids. But it taught me patience and compassion. I consider myself VERY lucky and I am very happy. I learnt how to wait, and wait more. I don't think of those days and years as wasted - I was learning and it's never a waste..
    We all have troubles, all of us. The Bible says to look up, where Jesus is and we will find comfort and our own purpose in this life...

    Blessings, Natalya, Huntsville, AL

    PS Your expectations for your little man will be fulfilled far and beyond if you only trust God.

    ReplyDelete
  61. This is a sad, yet beautiful post. I was sent here via Jessica Buttran va Knox McCoy, two of the nicest blogger peeps in the world. Hold onto each other for as long as you can because you are right: we never know how much time we have here on earth.

    And I will also say, it is posts like this one which should remind everyone to stop complaining about their floor being messy or there being Goldfish crackers spilled on the carseat. This is big. And scary. Have faith in the plan. You don't have to like it, but you can believe there is a lesson to learn from Issac's landing in your life.

    You are all officially in my prayers.

    ReplyDelete
  62. Rebecca HallatschekJuly 12, 2012 at 12:34 PM

    Happened to stop by from a mutual friends twitter. Sending love.
    God bless!

    ReplyDelete