Outside

 

“ I don’t like going outside, it’s too big”. That’s what Gabby told me yesterday. At first I didn’t understand. I thought about it for a while and slowly it sunk in. This is another feeling none of our children should ever feel. Our kids shouldn’t be afraid of the outside.

 

Now all that my little girl wants is the shades pulled , the lights out, and no music on. We have always been a family that relies on music during the quiet times. TV is rarely on. There wasn’t a time when you didn’t hear everything from Aretha Franklin to Lady GAGA (yuck) coming from our house. When driving in the car we are listening to everything from Sinatra to Ace Frehley. Now the radio stays off, the shades are down and the TV is on.

 

 

The world is to big

 

So what does that mean? It means she’s terrified. Remember not more than 6 weeks ago she was riding her bike singing Kei$ha. Now everything is so fast and intimidating. She doesn’t want her friends over, she only wants her sisters, her mom, and me with her. The world is too big now. If she makes it smaller it’s safe, it’s slow, it’s quiet.

 

I wish I could say I didn’t agree with her but, it is too big. My whole family is in shock. Squabbles between family members are rampant, both close and extended family. Bills are adding up, the house keeps needing work. Six weeks ago all this wouldn’t be an issue, but the world is too big now. We are only focusing on Gabby getting to the 27th of July when her radiation is scheduled to be done. However nothing is over at that point. We wait four to six long scary weeks after that before she has another MRI to tell us what the mass looks like. We pray for a miracle. We pray to hear “I don’t know what happened but it’s gone”. However we will settle for it’s stable right now. Let’s figure out what we do next.

 

 

Gabby’s life as she knew it will never be the same, none of ours will. But most of the world who hasn’t gone through something like this will continue to go along with their current lives. The Vogel household will live day by day for the rest of our lives, praying for the miracle, praying for words like stable and not growing. I’m thankful Gabby doesn’t understand that yet. She doesn’t realize what is truly happening now and in the future. She thinks she has the yuckies. No matter what other’s opinions are that’s all she has to know now. Her sisters are the same way. They don’t know what could happen. They know to love her and cherish her and that she is very ill . But that’s where it stops right now.

 

 

The world and the sisters thoughts

 

Katie:The other night I was painting with Katie, I asked her how she is felling. She said she doesn’t like to talk about Gabby to anyone anymore. Or the, and she spelled it out B-R-A-I-N- C-A-N-C-E-R.

Apparently the last week of school a group of boys from her school started making fun of Gabby saying she wouldn’t be able to do things anymore. Now Katie probably held back and didn’t tell me everything, but I looked at her and said she should never be embarrassed of Gabby. I explained Gabby has had surgery, she takes medicine numerous times a day, the list can keep going on. She is one of the bravest, strongest little girls I know. And the next time the boys or anyone say’s anything just bring up how brave and strong she is. Ask them if they would be tough enough to handle it. Knowing Katie she will. ( I also had to make sure she didn’t whack them one as well). Don’t worry parents of boys in Katie’s class she won’t hurt your boys too bad!

 

Madison : This was a rougher one. I was putting Madison to bed and asked what was wrong. Madison brought up that she was sad because animal shelters existed? I wasn’t sure where she was going with this. She then also explained she was sad about global warming. Again I was trying to figure out how this would tie in to what we were going through. She then said global warming would ruin the world and result in the “D” word. Now I got it, Death? I asked. She said yes. I haven’t had to talk to my children about death so I wasn’t ready , who would be. I explained that we can’t worry about the future, we need to cherish what we have, to appreciate what we know. I explained it a little softer: I can’t be worried about breaking my leg tens years down the road, but I can be happy I played Sorry with her tonight. She never directly asked if Gabby could die. I just kept telling her to be happy with now and what we know, to love every minute of her life and her family’s.

 

It’s too big for us as well.

 

So my five year old is terrified and afraid of all people, my other two daughters are a mess constantly fighting with each other, where does that leave Carolynn and I. Carolynn has been out a few times since we returned and always comes back overwhelmed. I have been out a few times as well, one more recently without the kids or Carolynn. I went to two fundraisers to thank all of the amazing supporters and people helping Gabby out (they truly are amazing). The whole time I was afraid. I kept thinking if I laugh they will think I don’t care, if I have to much fun they will wonder how can he do that. Basically it was rough , it was scary, it didn’t feel safe. The world went and got too big for me as well.

 

 

Where do we go now.

 

I read a post by a friend I recently met whose son is also going through this. In it she said her family has now started to plan things months ahead as opposed to just day by day. It was a beautiful post, full of hope. I have saved most of her emails because they helped me get through some real meltdowns over the last few weeks. I read her post and realized her family can be normal again. The greedy side of me said “ when will my family be able to do that? Give me a time frame?” However my family can’t think like that . Her family , her son has been at this for a while. Gabby has just started. What I take from her post is that it will come, there will be a day when we are planning our future further out than day by day.

 

Currently we can’t plan out more than one day at a time. We have already had a virus, some other non planned trips to clinic. Everytime she gets sick she cries out because her head hurts so bad, unexpected hair loss( at first we thought none, last week we thought just sides and back, today it looks to be coming off the top). Lately the loss underneath has been covered by the longer hair on the top. We have already explained to her it’s just the effects of the medicine and it is also a sign the yuckies are being beaten.

 

It doesn’t matter how big the world has seemed to have gotten. It’s our job to protect our children from how they perceive it, change with them, shape the way they see it. The road we walk right now is day to day. Eventually days will become weeks, weeks will become months. What’s important is that we make sure Gabby realizes she can handle it, she can handle anything, and during the moments she can’t we will be there to make the world a little smaller.

 

 

Believe

6 thoughts on “Outside

  1. Thank you for be so public with your emotions, I am learning and growing so much. I check FB everyday to see how your daughter is doing and praying I see something positive like she smiled or ate. I have 5 year old twins and have been in a bitter divorce for 2 years…..very painful. Reading your posts keeps me strong and realizing that everyone has their battles and for each one I think I have someone else’s is probably worst. I’m sure you have met hundreds along this journey and all I want you to know is that Gabby and your family are amazing and I pray for the miracle you need. Best wishes for a better day each day, Jill Schadler

  2. Dear Gabby,Katie,Madison,Carolyn & John:
    MIRACLES that I BELIEVE ARE SO TRUE! This testimony was heartbreaking. The World is BIG, FULL OF BELIEVERS, FULL OF PRAYERS, FULL OF THE FUTURE!!! I pray Gabby will not have to endure this too long. That she WILL go outside,ride her bike, play with her puppy & sisters. Picnics, swimming ALL CHILDHOOD things a child should DO!!! I ask daily that God keeps His arms wrapped around your family, heals & comforts ALL!!
    PLEASE KNOW THERE ARE MANY PEOPLE PRAYING!!!!! Sending all of you my love &prayers
    DEAR LORD, we lift this precious child of Yours up to You for healing & comfort. Please keep Your arms wrapped around her. You NEVER LEAVE ANYONE ALONE! GOD IS GREAT LOVE TO ALL OF YOU!
    LOVINGLY Mary

  3. John,Carolynn,Katie and Madison,
    Hopefully these will be words of encouragement. Nearly 3 years ago my friend contracted what they called a virus in her heart. On a Sunday she was enjoying a neighborhood wine tasting and on Monday she was in Jefferson fighting for her life. On Tuesday the family had the priest come in to give her last rights. Every one of her organs were shutting down. Mona was only 49. Mona did not pass from this world to the next that night. She underwent some of the most horrific operation on her heart, she was connected to a vintilator and all others kinds of machines and remained in a coma for nearly 3 or 4 months. I will forever remember when I said to her, I heard you smiled today, and she smiled for me. Mona remained in the hospital for another 2 to 3 months undergoing more surgeries and slowly coming back to her family and friends. It had been said by her doctors that she was the sickest person in the state of PA. I am glad to say that my friend Mona is back to her old self again. She defeated the illness. She is a Miracle. Miracle DO happen. Just believe. Gabby knows she has a whole lot of love to fight for. The world is big, just shrink in down to a little heart shape. Continued prayers and love and positive energy to everyone in the Vogel family.
    Peggy

  4. Vogel Family: I read your posts every day and pray so hard for Gabby and your family. I read this today and had to share it. You may have seen it. Wishing you and your family a a moment of peace and lots of faith and love through the coming months. With Prayers even from Strangers! Colleen

    What Cancer CANNOT Do:
    It cannot cripple love, it cannot shatter hope.
    It cannot corrode faith, it cannot eat away peace.
    It cannot kill friendship, it cannot destroy confidence.
    It cannot shut out memories, it cannot invade the soul.
    It cannot silence courage, steal eternal life or conquer the spirit.
    It cannot steal eternal life,
    It cannot conquer the spirit.

  5. Reading your story is so real and so very sad but so very true. One day your life will regain some kind of peace, hope, solace but already you know its second by painful second. I pray for you as a family and pray for your beautiful daughter to be healed. My son had a different cancer and after many remissions he relapsed again. Doctors all but gave up and within hours he went into spontaneous remission and is still well. There was no real explanation except prayer. Thy will be done etc. I will check in daily but know i am sending healing hugs and love from australia.xx

  6. Hi
    I am so sorry about Gabbys diagnosis. My son Beck was diagnosed with an sPNET brain tumor 2 1/2 years ago. He was nearly dead when we discovered it. He relapsed 9 months later after all the heavy guns of chemo we threw at it. I never wanted to look at statistics but now I have looked back and I believe he had a less than 5% chance at long term survival. We too felt the world was too big and scary. Going out in public and talking about the weather felt bizarre when our baby had brain cancer. He was only 19 months old at diagnosis. I can’t tell you the outright miracles we graciously received from our God as we pleaded with him for our sons life. He met us and carried us through the most unbearable moments when we thought he was going to be taken. I tell u that today he is almost 2 years cancer free. He is 6 months off of treatment now and you would never know by looking at him what he has been through. I cannot believe that we are breathing and living! God has truly delivered to us a miracle. They are real and do happen. So never lose faith no matter what odds and statistics the doctors give you. Each story is unique and God has a plan for each of our special kids. Pray and hold fast to the o my one who can carry you through and who loves little Gabby more than you could ever imagine. Afterall he did create her! I remember being so angry at God I itially after diagnosis…..I couldn’t understand what good could possibly come from my baby having brain cancer. After having gone through this journey I can truly tell you we have been so blessed. I am changed in ways I am eternally thankful for. Our journey isn’t over. We still go for scans every 3 months and pray that ugly monster never returns.
    Always have faith and believe!