Little Sophie’s Diagnosis, Recalled Two Years Later

This is a guest post written by Tina Buck, mother of Sophie Buck (affectionately known as “Bean”).  It is taken from Tina’s journal and was written on April 25, 2009. 

Today marks the 2nd anniversary of Sophia’s diagnosis of her Craniopharyngioma. I can’t help but remember that morning when I saw her eye – it had turned in.   I called my husband Buck to say that “this isn’t a virus, we are going to the doctor and we’re not taking NO for an answer.”  There was no way to know what we all were about to face. Still sitting in the ER waiting room the thought of a Brain Tumor never even entered our mind.

Then after the CT the doctor said Sophie has a mass. I remember thinking “what are you talking about, a mass?”  I think they knew what type of tumor it was but she needed an MRI to be sure. I called Mom and Dad and told them to start driving NOW. That first night was so hard on Bean, she was so scared. They started putting IV’s in her and taking blood.  She screamed and fought. I slept in the “crib” bed they had with her; she didn’t want me to leave her and there was no way that I could.

The next day the “bump” doctor came in and told us that she had a Craniopharyngioma. I think I asked her to repeat that word 4 or 5 times.  Then I had the doctor write it down. Then the surgeon and the bump doc both sat us down and all I remember thinking was “get that thing out of her head and please God don’t let it be cancer.” Little did I know about the Pituitary Gland and the Hypothalamus and really what would lie ahead for our Bean.

The next day was Friday 4/27/07, the day of surgery. I see it like it was yesterday, we were in the pre-op room waiting for them to take her back and they had butterflies and flowers everywhere in that room. We made sure to ask the surgeon how he felt and if he had a good night’s rest. We both hugged and kissed her and didn’t want to let her go. It was in the hands of God now, guiding the surgeon’s hands. I can’t remember if it was 5 or 6 hours, but I do remember the waiting room full of friends waiting to hear that phone ring every hour with updates. We were just sitting in the cafeteria when the surgeon found us and told us he thinks he got it all. Buck hugged him so hard and so did I, then Mom and Dad. He was exhausted you could see. We had a Priest with us when we went back and she didn’t even look like my little baby anymore. She was swollen and pale, but still beautiful and all I wanted to do was crawl back into that bed with her.

Fast forward to today. Some of you ask me how are we’re doing? Sometimes I honestly don’t know how to answer you so I just say “hanging in there.” I don’t want you all to know that my heart is breaking; it seems like every minute of every day. I hold back the tears a lot because I don’t want you to see that I’m in pain and miss my Bean all the time.

It’s easier typing out your feelings like I have been doing the past 2 years then seeing someone face to face or talking to them on the phone. Buck and I talk about Soph all the time. We do with Sydney too. She misses her big sister; sometimes she wakes up and says “I got to get Saphey back.” Or like just this Friday she picked yellow flowers for Saphey “I got to get it to her.” 

I want Sydney to remember Sophie and that she loved her little sister, very much. We are getting through this knowing that she is with God and not suffering anymore and are thankful that He has taken that pain away from her. I just keep thinking that she will walk around that corner of the bedroom and say “hey Mommy” and give me that big smile of hers.

I want to see her, touch her and smell her. We had our share of hard times over the past 2 years. But, I tell you, when we had good times those were the best of all. She was improving more and more every day and had been doing much better in school and with her movement. I believe that God gave us the 6 months before she passed to remember what a wonderful joy she was to have around. I miss you baby, I love you so much!

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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One Response to Little Sophie’s Diagnosis, Recalled Two Years Later

  1. mary garmoe says:

    Im so sorry for your loss, but so thankful that you were strong enough to share it with us. My 9 year old son was diegnosed with a craniophryngioma on Oct. 22, 2010. reading your story was like reliving ours all over agen. The MRI that found “THE MASS”(i was 38weeks pragnent) the drs, the surgry, the dr saying “we got itall”!!!! But like you i had no idae what was ahead for us. its been 4 months since travens surgry and we have only been home for 2 weeks. The toumer crushed his pituitary gland causing him to have diabetes insipidus witch has been very hard to control. He is gtting better and was abel to walk agen with help. he finly got to go home on jan 21 2011 but his sodium went back up (175) so we have been back in the hospital since Feb 8 this visit he got a gt button(feeding tube) and had to have a shunt put in yesterday Feb 25 . The drs say hes gunna b fine and i belived them untill i just read your post, i hadno idae it could kill him its not cancer itssuppost to be ok….i dont wont to bother you, but could youplease tell me what happend to your daughter maybe it could help save my son. Thank you and God bless you and your family MARY

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