Afraid versus Worried

 

Before this started, before Gabby was diagnosed, I didn’t realize how different the two words afraid and worried were.   Since this happened I have constantly been worried for Gabby.  Worried she wouldn’t grow up to figure out I was Santa, worried I wouldn’t teach her how to drive, worried that some boy would try to get her to sneak out late one night.   In the last two weeks I have no longer been worried.  It’s switched over to being afraid.   Afraid she wouldn’t see her sixth birthday, afraid she wouldn’t see Disney in October, afraid she wouldn’t see Christmas this year.  Afraid!   Her symptoms are getting worse, the vacation we planned to the beach didn’t work out and we returned early for her to be admitted to CHOP and receive surgery.   I have never so badly wanted to just be worried as opposed to truly afraid.

 The beach

 We headed to the beach with all these ideas that she would experience joy and happiness, smile and laugh.  Unfortunately that didn’t happen.   When we took her to the beach she just wanted to go back, she sat on a chair and just closed her eyes.  At the house she just wanted to eat and watch TV.  She sat and watched her sisters laugh and have fun and all she could manage was to just pretend to be asleep on the couch.

While we were there Gabby’s symptoms got worse. She no longer wanted to walk assisted, and she started to have us feed her as opposed to eating on her own.  Her breathing seemed labored as though she couldn’t get a full breath.

 One night we put her to bed and watched a movie with the girls and my mother.  As I looked around the room at my daughters all I could do was hide my tears because my third daughter was upstairs in her bed fighting to take a breath it seemed. On Thursday morning we called the Oncology desk and CHOP and they said bring her in.  We decided to leave the girls with my mother because this truly was the only vacation they had this summer. Carolynn and I put Gabby in the van and headed to CHOP once again.

 Back at Chop.

 We met with Gabby’s doctor, she had another CT scan and it showed that the fourth ventricle in her brain was narrowing due to the pressure of the mass.  A shunt would be placed in her brain with a tube threaded down her body into her abdomen so the spinal fluid would be able to drain since the ventricle wasn’t doing its job.  

When we were driving to the hospital I made sure to tell Gabby, don’t worry it’s just a check-up we would be headed back to the beach right afterwards.  Well that didn’t happen, she was admitted and surgery was planned for Friday.  As I looked at her I started to realize why she won’t say I love you to me.  I keep lying to her.  I told her we would be leaving and now here she is staying at the hospital again.  I had to leave that night to drive back down to the beach to get the girls and my mother due to the hurricane.  The next day we drove back.  A normal two hour ride took six.  When I got back to the hospital Gabby was in surgery.   The Surgeon came out and said everything went well.  We asked how soon we would see results.  He stated IF it works within a day or two.  Just hearing the word IF was a punch in the stomach.   When they brought her back to the room I broke down, she has a three inch incision on the side of her head and a three inch incision on her stomach.   I wanted so badly just to grab her and say how sorry I was, how I want this all to go away and if I could stop it and take it all myself I would.  I held her hand in mine.  She has such little hands, more tears, more true fear.  I kept thinking how could someone with such little hands be so sick, how could someone with such little hands need two surgeries on her brain in less than three months.

 Home

 Gabby had surgery four days ago, her symptoms haven’t improved.  She can no longer manage to lift the spoon to even feed herself Rice Krispies she loves so much.  She can’t produce enough suction to drink through a straw.  We lift the cup to her mouth she gets some down and the rest just seeps back out of her mouth.   She is no longer walking even assisted like she was three weeks ago. Speech now consists of grunts and moans most times, with the occasional word.  The worst part is I can’t explain to her why this is happening, why she can’t walk, eat, and swallow.  If I’m afraid she has to be truly terrified.  Imagine waking up one morning and you couldn’t move correctly, couldn’t eat or drink.  On top of that imagine there was no explanation given to you.  Just some smiles and promises that it would be alright.

 School is back in session.

 When we got home from the hospital all the school paperwork was there.  Carolynn opened it, started to cry and threw it across the room.  The paperwork was a reminder that she wouldn’t be going, life was moving forward and she was stuck behind.  She has waited the last few years to get on that bus.  She watched her sisters go as we kept telling her soon Gabby you’ll be going to Kindergarten. Less than four months ago she believed that.

 As a parent I dream of certain points or milestones in my children’s lives.  The day they no longer need diapers and are potty trained, seeing them go to a prom, teaching them to drive, walking them down the aisle when they finally get married, and today the milestones, the dream of giving Gabby a hug and a kiss and waving goodbye as her bus drove away didn’t happen.  She currently can’t go to school even with an aide it wouldn’t be possible.  We are not interested in home schooling because we want her to be able to socialize with her friends.  Now again I’m just afraid that isn’t going to happen anytime soon.

 Life goes on

 Tomorrow is her MRI, we will have to wait a week to discuss the results with our doctor.  A week of not breathing, a week of constant fear.   A week wondering is this monster growing, are these symptoms just a sign of tumor breakdown or is she getting worse. 

I have to go back to work in the next few weeks.  Bills need to be paid, we need to keep insurance.  My fears concerning going back consist of the thought that if she gets worse, I won’t be there again, if this monster takes her from us I spent the last days and months away from her at work as she sits with Carolynn wondering why isn’t daddy here.  I will hold this against myself for the rest of my life if it happens. I will never get over the guilt that during these days I left her again.

 We also have two other daughters, we need to be strong for them, soccer is starting, birthday parties, homework, everything.  We need to figure out how to live again with the newest addition of cancer into our lives.

 Believe

 It’s such a powerful word.  I need to believe, I want to believe.  So I do believe not just that she can be the miracle but believe she is true perfection, she is pure innocence, she is what I strive to become, the type of person that doesn’t hold hate in her heart or anger.  A person who just wants to make people smile and laugh as she sings songs on the radio and dances around the room.  A person so perfect that even her little snore sounds beautiful.  So when you ask me do I believe?  The answer is YES.  I believe in Gabby and always will.

 

Believe

47 thoughts on “Afraid versus Worried

  1. Thinking and praying for Gabby and your whole family every day!!! My heart just breaks for you and your wife as parents struggling with what your daughter is going through! I went through cancer and treatment and I was thankful every single day that it was me and not my daughter….my heart just fills up when I think of you watching your child and unable to take her place. May God give you the strength to get through each moment of each day and send you angels to help you when you feel you don’t have the strength to go on!!!

  2. I am so sorry that your little girl is so sick. i am praying so hard for her! i have also prayed for you and your familty that god will step in and wash away all her and ur pain! lots of love and prayers r sent her way!!

    • God is more then able to touch Abby even right now as I type this note to you.He is a miracle working God ,all be cause of his son Jesus Christ who suffered severely for the healing of our sickness and diseases,Isa.53,he was wounded for our transgressions and bruised for our diseases and by his his stripes we are healed!!
      All he requires of you is to believe and trust in him.
      Father God in Jesus name we speak to this sickness in Abby’s body,to leave in Jesus name for the honor and Glory to God,amen!!
      Please let us know how we can help.

  3. Words can’t express the love you show for Gabby, she and the other women in your life will know that you have been there for them when you’ve thought that all hope was lost. My thoughts and cares are with you and your family.

  4. I have been praying for Gabby & your entire family ever since I 1st heard about her. You have given us such insight into what this experience with Gabby is like & I desperately wish there were something I could do to ease your pain. God bless little Gabby & all of you.

  5. Your story was very moving. My heart hurts just from reading it. Although none of us understand the cards that are dealt to us, it’s reassuring to know we are exactly where we are meant to be. You will all be in my prayers. God has Gabby in the palm of his hand just like all of us.

    I am truly sorry for your pain. God Bless.

  6. I so wish I could make it all better too. I just went through all these same things with our mother…and I kept reminding my family its got to feel even worse – if that’s even possible to imagine – when a child is fighting this horrible, evil disease. I know exactly the spot you are in, and can only imagine the degree of stress and pain and heartache. We have a team in the Race for Hope is Philly. Its in memory of my mom (Me-Mom), but that money raised goes to all brian cancers. Keep up the Hope. Gabby feels all that love from all of you, no matter how sick.

  7. My heart goes out to all of you. I was a Daddy’s girl and opposite to you, I watched my Dad go through cancer when I was just slightly older than Gabby. There is no reason for it. As a mother now, I could not imagine what you are going through andI pray everyday, every time I read your posts that she will get better and for strength for you and the family. Believe, that most patients do get worse before getting better. Beleive that Gabby will be okay. Believe that she will dance and sing for everyone again soon. And beleive that your little girl has touched so many without even knowing it. All of our prayers and thoughts are with you!!! Sweet kisses Gabby.

  8. You are the kind of daddy who makes it easy for his girls to know God as Father. Gabby is resting in your love, rooted in it…and your love is rooted in God’s love – please don’t pull yourself apart inside with guilt … try and stay open to the flood of strength, wisdom, and peace we are praying will flow through your ‘roots’ into your body, mind, and spirit. We are blessed and brokenhearted to walk this out with you…you are not alone. We believe with you…love with you….wrestle and weep with you. Let’s all receive this day as the gift that it is…love our beloveds with all we have to offer – just like you and your wife are doing.

  9. Unfortunately, I can understand exactly what you are going through right now. We recently traveled the same journey with our 5-yr old, Caleb. I also use a blog to keep everyone informed with how we are doing. Thank you for sharing your thoughts and emotions with the world.

    Please know that I am praying for your entire family right now. God can and will sustain you through this difficult time if you allow Him to do so.

    Angela Huffines
    (Caleb Is My Hero)

  10. Thank you for sharing this very personal update. While it is heartbreaking, it is also beautiful because of your very pure love for Gabby. Please know that you couldn’t possibly be a better father to Gabby than you are being right now and at every moment. Please be assured that she has exactly what she needs from you and your wonderful family. As you wait for the MRI results, I pray that you can endure the next few days with some measure of peace.

  11. PRAYING for you all and thinking about sweet, sweet GABBY always….SO many people are surrounding you all in prayer….STAY STRONG, sweet angel!!!
    Jen in Georgia 🙂

  12. We are praying for you and your little princess!!! Please keep believing that God is with you and your family. Stay strong!!!! Give her a hug from all of us, she is beautiful inside and out 🙂

  13. It has to be repeated, “While it is heartbreaking, it is also beautiful because of your very pure love for Gabby”

    Human language has no words where resides comfort in Your indescribable fear, or God forbid, the possible agony yet to come. Just know we hear the great power of your heart and soul across the miles speaking to us, and touching people in ways I did not imagine possible.

    I know it cannot help to say this now, John, but I have great faith Gabby, your girls, and your wife feel your deep love so much more no matter what you have to do for the family. My friend, you are showing the best we human beings can in awful times.

    God bless you, John and God bless Gabby, your wife and the girls. I wish I had more to offer.

  14. I am PLEADING with you God, Please restore this little angle to health. She is just a little innocent soul that you allowed to be placed here. Please step in and save this child that you hold in the palm of you’e hand. You can turn it around, you have before and you can now. This is a good family God with a man at the helm the likes of which I have never met. My heart aches for the pain that this family is going through. Please!!!!!!!!!
    I BELIEVE YOU CAN AND WILL

  15. Rob says it best, I wish I had more to offer. The daily struggle of a parent guiding their child through this disgusting maze of cancer is horrific at best. Please know I will be praying for Gabby’s comfort and healing as well as for you and Carolyn. You two are doing everything you can and your girls, all of them, and whether they express it or not, they know it. Love shows itself in so many ways we don’t even realize…like midnight cuddles in the hospital, being on the sideline at the soccer games…they know and feel it.

    Please don’t beat yourself up about “lying” to Gabby…you’re not. You are telling her the truth you know in that moment. You are doing an amazing job. Know you have a legion of people “out there” praying for you and especially Gabby. If you need to talk or yell or cry, please reach out to me. I’m always here for you all.

    Much love,
    Declan’s Mommy, Sherri

  16. I am sorry about your little girl. I will pray for her and your family. My own little girl is being treated for pineoblastoma. I understand what you mean about life not going forward…I feel your picture says it all…a father down on his knees, praying and hoping a and holding his little baby’s hand. I just wanted you to know that someone in this world does fully understand and my prayers have been added to your own.

  17. John, you are the strongest father I know right now. You cannot place any blame on yourself for having to work to provide Gabby with the best possible care she can receive and supporting the rest of your family. As a father myself, I am touched and saddened by this update. Just remember, not only do you believe in Gabby, but Gabby believes in you too. She always will. You are her Daddy.

  18. What more can be said that hasn’t already been said .. YOU are amazing .. praying for you all.

  19. We will pray for your beautiful daughter Gabby and for yu and the rest of your family. Prayer is very powerful and works many miracles, I say that as a parent of a beautiful little girl who was diagnosed with a Lukemia in 2007 at Children Hospital Pittsburgh. I say be strong and believe she will get beter I had to do it for 3 straight months when she was first diagosed. I know the fear of wondering if she will wake up to see tomorrow, I knw the tears and the sleepless nights. But Childrens hospital is an amazing place and the doctors work miracles. They did for my daughter and I pray the same for yours. Many thoughts and prayers your way

  20. Stay strong and know that there are many praying for you and your family….as the mother of 3 healthy daughters and 6 healthy grandchildren I have no idea what you are going through but pray that God gives you the strength you need.

  21. Praying for your family and beautiful Gabby. I’ve been following your site for some time now, and although you don’t know me, I keep you in my prayers. You are wonderful parents and I admire your courage. Stay strong. Sending my love.

  22. John, I am praying for a miracle. I am praying for the continued strength you have shown, and praying for the support and love that surrounds you and your family.
    Praying,
    Venus

  23. Wow. A friend told me about your daughter and reading this… well, my heart is just broken for you and your family. I’m a mom to a precious 4 year old boy and another baby on the way and I cannot imagine anything I dread more than my children being sick or hurt or worse, fighting for their lives. I don’t know your religious beliefs but I am a born-again Christian. I want you to know that I am praying for you and your sweet little girl, Gabby. I don’t know why the Lord has allowed this but I want you to know He loves you and wants to give you grace and peace and guide you through this. My father died when I was 3 and my mother was left with 4 children to raise on her own. To this day I have no idea why God chose to take my dad to heaven. But I know because of my faith in Jesus Christ that I will see my dad again one day who also placed his faith in Christ. I hope you also know the peace that only Christ can bring. I do pray though that the Great Physician who created Gabby and loves her more than you can ever know will reach down and pluck this cancer out of her little body. I pray God will give you a miracle. And we will not stop praying…

  24. Thank you for sharing this with the world. I am sure it was not done for our benefit but I need you to know how it truly humbled me. In this microwave society we take so much for granted.

    I will pray for Gabby and your family. Please continue to BELIEVE as we serve a mighty God! He can do all things. I will pray that his mercy touches her and she is healed!

    Be blessed…

  25. We are so touched by Gabby’s story. May you find the strength to walk through each day with hope. And know that you have the love and support of so many people who- even if their names are unknown to you- have your back every day. Your whole family will be in our prayers!

  26. Yes I am praying and my family and friends are praying as is the rest of the world for your little Gabby and for all of you. Beyond that, all I can say is this sucks for all of you and I am so angry that Gabby, your family and every other child’s family is going through something like this. I am beyond words. <3

  27. Your story has once again reminded me how precious life is. Your family is in my thoughts and prayers.

  28. May God Bless You and Keep You in All of This. I do not know what to say, except that you are incomprehensibly courageous to have the strength to even share this. I am praying for Gabby, and for your entire family. Please God, Please God, allow Gabby to get well.

    Love and Thoughts,

    Michael

  29. It is so hard to say say anything. My heart breaks for your sadness, worry and fear. I feel so sad about what you are going through with your darling, sweet little girl. I am so touched by your thoughts and stories of Gabby and how your family is dealing and coping with this unforgivable disease. I pray to God to give you the strength and courage you need to put your feet on the ground in the morning to get through each day. I can’t imagine how hard it must be to run a home with a sick child, and at the same try to keep things as normal as possible for your other children. My love, prayers and thoughts are with you and your family. I am so incredibly sorry for what you are going through. Love, Suzi Aselton

  30. Our prayers are with you all as you experience this painful time in your lives. God bless you all and give you the strength you need to get through this, as He did with our family as we lived through the heartbreaking illness and passing of my precious husband, 26 years ago, from Brain Cancer. Mike, like Gabby was a ‘fighter’ and was always trying to ease the pain for all those of us around who loved him and cared, just as you do. We pray for a Miracle in Gabby’s life and that her recovery might be as pain free and peaceful as possible. We’ve been where you are now and want you to know there are lots of people out here who support and respect you in your battle with this terrible cancer. We care! — Mary Nash Stoddard, Founder ACSN (1987)

  31. I am reminded of a time 3 years agao when a friend of mine contracted a “virus” in her heart. This caused all of her organs to shut down and she was given last rights. (They don’t call it that anymore.) Anyway her condition was dreadful. She lay in a coma for months. Endured a surgery opening her chest and leaving it opened for some time for easy access. Not to mention other surgeries. The doctors said she was the sickest person in Philadelphia. Then one day when I came in the nurses told me she had smiled. I asked her if she did and sure enought her lips turned up just a little. She ended up recovering fully. Today she raises her son, sports her hummer and we have even partied a few times together. She is back 100%
    My point: This woman was and is a lieving miracle!!
    I BELIEVE!
    I am also claiming all the miracles that Jesus performed, including rising from the tomb.
    Love and Hugs to sweet little Gabby XXXXXOOOOOO

  32. I read about Gabby from a friend’s post on FB. I am praying daily for you sweet Gabby.

  33. I will be praying for Gabby and your family and asking God to put his blessed hands on her and heal her . She is such a Beautiful little girl and may God carry you and your family through each and everyday . God bless you and your family.

  34. I read about your story from a link on Facebook. Your story brought me my knees. I am so sorry for what you are going through. As a parent of an eight year old little girl myself….we want nothing more than to see our children happy and not sad and hurting. We would DO ANYTHING to take their pain from them.

    The word Believe is a strong one and one that is strong in my life as well. I send you all my faith in that word right now. Be strong for your little one and know there are prayers coming to you and your family from all over. The miracle of prayer and our faith that word believe, lets hope will reign through and heal your precious Gabby!

    Warmly,
    Tracy (and my little Jenna) Sinkinson

  35. Your updates put into perspective what is important in this life. Thank you for sharing your journey. Gabby is a sweet little girl because of the love you and her mother and sisters have showered her with since birth
    In spite of all the stresses you face with the weather, not telling Gabby what is going on, and going back to work, your love for your family is evident. You are doing what any good dad would do for his little girl. I’ll be praying for Gabby and the family.

  36. I Pray that everything will be Healed In Gabby’s Body, Devil I ask you In the name of our Jesus Christ You leave Gabby’s body and never return. You have no power over her and you never will win this fight. You lose the fight at Calvary and you will lose this this one too. Jesus has her in his hands and he will Heal her In the name of Jesus Christ Amen. Praying for your family everyday.

  37. I worked in our local ER, paper pusher, but I was right in there with the patients as they came in. I had to get their info. A baby came in one day. Cody, 11 months old, brain cancer. He was brought in by ambulance. His father had accidentally given him a wrong medication, amount and timing, I think. Part of my job was to go in and armband the patients. I went in, and this baby, small, small baby, looks up at me, sunken eyes….crying. He’s in the middle of getting chemo. He looks more like 6 months old. I go back to my desk, and I will tell you, I had worked there at that point, 5 years. I had seen just about everything. Yeah, I would get a little emotional at times, but shook it off within a day or so. This child…….this child, I could not shake off. I treid for about a half hour to hold it together, and than finally had to go out back. I sobbed for all of my lunch break.

    I left work that day, and I am a believer, I believe in God. Always have. I left that day REALLY asking the “why’s” Stayed with me that night and into the next day. All the why’s of my life came back to me. Losing my father when I was 9, having a baby at the age of 42, and hearing his heatbeat for only a few brief minutes. I realized after a few days of my seeing Cody, that it would’nt matter if God himself stood right in front of me and explained step by step “WHY” any of this happended. It would never be a good enough reason. I wanted my dad, I wanted my baby, I wanted Cody to not be sick. Somehow that felt like acceptance to me. I did feel a peace knowing that, I dont know why, AND I dont have to “like” The plan. I just have to keep waking up, and hope for something good. I hope for good things for you, and Gabby, whatever form that takes.

  38. Your words are so beautiful and raw. It is rare to see this from a dad.
    And, yet, I write this and am sure you are thinking “who cares? who cares that some random person in VA likes my words. just heal my baby”. I am so sorry that you are going through this. My heart hurts. You are a great dad though, I hope you can remember that as you go through this hell.

  39. To John and Carolynn,
    I am lost for words. I can only try to imagine the swirl of emotions that you are trying to deal with at the moment. I hope these borrowed words help somehow………….

    A Child of Mine by Edgar Guest
    I will lend you, for a little time,
    A child of mine, He said.
    For you to love the while she lives,
    And mourn for when she’s dead.
    It may be six or seven years,
    Or twenty-two or three.
    But will you, till I call her back,
    Take care of her for Me?
    She’ll bring her charms to gladden you,
    And should her stay be brief.
    You’ll have her lovely memories,
    As solace for your grief.
    I cannot promise she will stay,
    Since all from earth return.
    But there are lessons taught down there,
    I want this child to learn.
    I’ve looked the wide world over,
    In search for teachers true.
    And from the throngs that crowd life’s lanes,
    I have selected you.
    Now will you give her all your love,
    Nor think the labour vain.
    Nor hate me when I come
    To take her home again?
    I fancied that I heard them say,
    ‘Dear Lord, Thy will be done!’
    For all the joys your child shall bring,
    The risk of grief we’ll run.
    We’ll shelter her with tenderness,
    We’ll love her while we may,
    And for the happiness we’ve known,
    Forever grateful stay.
    But should the angels call for her,
    Much sooner than we’ve planned.
    We’ll brave the bitter grief that comes,
    And try to understand.

    From The Book LIVING THE YEARS 1949

  40. While in this world, we will not be able to truly understand why such innocence has be swept away.
    It probably appears to you that joy will never enter your heart again but as a friend of an amazing couples who lost their little girl at the innocent young age of 16 months (without an answer why) they were able to sustain their faith in God and continue living a life that offers hope and healing. You’ll be able to do the same in time.

    Even as you prayed for healing and it appeared your request was ignored, recognize that she has been healed. All her suffering is gone. I know you want nothing more than to hold your sweet little girl in your arms again but please be comforted that you will. She is healthy, vibrant, and full of joy as she waits to hug you again.
    God bless you,
    ~Diane~

  41. Reading your story brings back to me my struggle as my son suffered from cancer. I hope that you are surrounded by love as we were. Cancer takes it toll on the whole famiy. It took me some time to realize that I had no control over it (which is so against how you want so much to protect your child). I pray for your daughter and for all of you. I felt glad that we had him at Childrens Hospital in DC, as they were wonderful. If you want to talk to someone who has been there recently, please feel free to contact me. With love

  42. Hi. I found you thru “prayer for Alivia” and I have read your story of you and your precious daughter. I am so sorry for your loss. I can’t even begin to imagine how you feel. Cancer sucks! I lost my brother to glioma 5 years ago and people tell me all the time that it gets better with time…..it still hurts and I think it always will. It just doesn’t seem fair to lose such a sweet and innocent child. My heart breaks for you. I think you could make a book about your journey. You writing is powerful and it speaks volumes on how you feel. You are a wonderful writer.