3.01.2013

A Day to Breathe


Can I go back to Colorado now?

I can tell you with all certainty that surviving scan week is a monumental task not to be taken on by the faint at heart.  This is not a sprint to the finish, but rather a slow crawl to a never ending half-way mark.  Actually, that is what every day in my life is like.  There are no more sprint days.  I am the walking, talking, living example of taking life day by day.  Anyone who knows me well can attest that this type of living does not fit my personality at all.  Who says you can't teach an old dog new tricks?


 When you sign on as a St Jude patient in the SJMB03 protocol you are given a card that details what your life will look like for the next 5 years and beyond (in our case 13 years).  Wednesday was our first day of pre-scan visits.  Lucy had lab work, an ECHO, and EKG, a endocrinologist visit and then audiology.


Everything went well up until the audiology visit.  Nothing that happened came as a surprise but we are all still trying to cope with the news.  We had reason to believe that Lucy was suffering from hearing loss and unfortunately our fears were confirmed.  What we didn't expect was that the hearing loss was in both ears and it was substantial enough to require hearing aids in both ears.  Yeah, huge shocker!!  You know, for many people this would be devastating news.  For some, it is the worse news they might ever receive about their child.  For me it was almost a relief.

Throwing animals in the sound proof chamber.
I know it may be hard for you to understand but I left the appointment feeling glad, not sad, about the hearing aids.  For once in this journey, Erik and I are able to do something to help Lucy.  Every decision has always been made for us.  We have been at the mercy of doctors, nurses and radiologists.  We feel blessed to be able to help her hear better.  Do we want her to wear hearing aids?  Well of course not.  No one wants that for their child.  But do I want to give her every advantage in learning to read and spell?  Yes!  Absolutely.

Her hearing loss is not permanent, thank God, and is caused by damage from "severe sinus disease."  Those are the words we received yesterday, after "wonderful scans."  I know I have whined a lot about Lucy's sinus infections but I clearly had a reason to.  It's been 2 years since her sinuses were destroyed by radiation.   Lucy has had set back after set back, all related to her sinuses.  Hearing loss just happens to be the worst of it.  She will go next week to be fitted and hopefully she will begin hearing better in a few short weeks.

Lucy in the breathing chamber.  Tests are done to make sure that chemo did not damage her lungs.

Thursday came and as if we didn't have enough on our plate, Lucy started screaming of a headache before we left the house.  She was also really tired and slept the whole way to Memphis.  She continued to cry through her psychology appointment and like any good mom I told her to suck it up.  Yeah, mom of the year here.  I just assumed she was anxious about being at the hospital and was upset because she was missing art lessons that day.  When she vomited all over herself and the psychologist's floor, I became a little worried.  Headache, fatigue, vomiting   Those are all tell-tell signs of a shunt malfunction.  Thankfully, they are also signs of a child being NPO (no food or drink) and taking a wad of medicine on an empty stomach.  

playing the iPad with dialated pupils and a bad attitude
After we got checked out in E Clinic and cleared to go on with our day, it was time for the second dreaded appointment of the week.  The ENT noticed that Lucy's left eye was turning in and we had to get it checked out.  Eye exams at St. Jude are very long.  There are so many stones to turn over when you are dealing with anything related to cancer.  At the end of the exam, the Dr. (who had seen Lucy at LeBonheur when she lost her eye sight the second time) concluded that the eye was not turned in.  Rather, it was the shape of her eye socket and a generalized fatigue on that side of the body that made the lid droop.  Lucy did, however, fail her distance eye exam.  We are going to wait one month and test again to make sure that she wasn't just fatigued from the trauma of the day.


Daddy met us right before Lucy went back for sedation.  She was so excited he made it and she held on to him until she went to sleep.  Yesterday was the first day that they have ever allowed 2 parents to go back for sedation.  I was always the one who got to hold her before she went off to dreamland.  Today, she wanted no one but her Daddy.  It was really precious.  He loved every minute, too.


Lucy cracked us up as she was getting her gas.  She kept laughing and wouldn't relax enough to fall asleep.  She had everyone in stitches!  Just like an addict, she had begged for her "sleepy medicine" all day long.  She was absolutely giddy with excitement when it was time to go to sleep.  Thank God for happy moments in the hospital.  

We are beyond thrilled with the news we received last night.  God has blessed our baby girl and our family with so many miracles.  I am always so humbled when I walk through the halls of St. Jude.  I am haunted by the memories of those that have lost their battles (but won the ultimate prize) and those that are clinging to life with every breath.  Perspective is something I have written a lot about.  Yesterday I received a very healthy dose of it.  We have our little girl and there's nothing more that matters.  

Thank you all for your prayers.  My God's mercy be on all of you and the challenges that you are facing right now.


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17 comments:

  1. As you well know, there are worse things than hearing loss. Thanking God for Lucy's good news!

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  2. Dear Family, You do not know me but I read your blog everyday and am disappointed if you have not written. I pray for you and your family everyday. I am praising God tonite to hear that the scans are good. I have been on a similar walk with a loved one with cancer but not a child. It is a day to day rollercoaster but thankfully I know Who is in control. God bless you all.

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  3. We say it often but out God is good!

    As always, thank you for sharing.

    Praying.

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  4. I cannot wait to share the news of Lucy's clear scans with my church family. So many people are encouraged by Lucy's fight and your family's faith. Thank you again for sharing. Go Lucy Go!

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  5. I'm so happy for the good news of good scans. And also, I'm so glad there is something which can be done to help Lucy's hearing loss.

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  6. I am rejoicing with you over this good news!

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  7. So happy for you all!

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  8. I am just so happy for this news! Will be praying for the hearing loss to be short term and for all these issues from the chemo to rectify itself. Praying for you Lucy, always!

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  9. Hannah @Supermommy!...Or NotMarch 2, 2013 at 1:24 PM

    I don't know if you've ever heard of it, but there's an organization that makes special customized hospital gowns for children with chronic illnesses at no charge to the children. If you want to check it out, it can be found at http://www.graciesgowns.org/

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  10. What a blessing! It's a miracle to me that the hearing loss is just temporary. My grandson got hearing aids at a very young age and basically wouldn't wear them. I think they're probably uncomfortable. I believe he hears fine (he lives with me and is almost 30 years old now), but his speech could be better. I hope Lucy loves her aids.

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  11. I can never comment on your blog because I guess my iPad does not support Disqus, not sure! I am on my MacBook now. In any case, so glad that the scans went well and that you have a solution to maybe some learning issues related to hearing. They can make the hearing aids look so cool now a days! Of course, kids do not like anything that makes them seem different, but hopefully it would only be temporary. Do you follow kellys korner? Her little girl has hearing aides, she has permanent loss but maybe she has some hints!
    Oh and I love my tervis tumbler. I did not expect it to be so big but that has ended up being awesome. I drink soooo much during the day, now I do not have to fill up my cup so often!!

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  12. Your posts continue to inspire me, Kate. Erik is blessed to have found such a wonderful lady. I read your blog daily and am consistently humbled, challenged, and encouraged. Your final paragraph that talked about the "ultimate prize" was such a precious reminder to me of what is important. I want to daily teach my children to focus on our eternal reward and store treasures in heaven. (Of course I need a constant reminder as well!) So thank you for reminding me every time I read your honest, heart-felt words. I am thrilled with the news of Lucy's scans and continue to pray for her, and your entire family. My 9 year old daughter consistently calls Lucy by name in her prayers even though she has never met her. I realize that we are across the state and are strangers to you, but your family is constantly in my thoughts and prayers. If you think of it, please tell Erik "hello" from Jonathan and Stacy Greene.
    In Christ,
    Stacy Webb Greene
    Maryville, TN

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  13. I visited St Jude's once strickly as a visitor with a guide to see the hospital. I was amazed and continue to be amazed everytime I hear someone talk about being there as a patient. I'm thankful I never had to use what is offered there but am eternally grateful it is there for those who need it. I'm so glad Lucy's visit went so well. I continue to pray for her and your family. She will always be a part of my prayers. I want to add that I cannot comment on your blog from work - ancient computer soon to be replaced! But the video of Lucy running with little Jack behind her and mimicking every move she made had me laughing out loud. What a joy your children are. You are truly blessed. Not wanting to leave Ella out - she is beautiful and I loved her basketball pictures. With love I will sign off for tonight.

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  14. Hello, I do not remember how I first came across your blog but have checked back periodically. I wanted to share some hearing aid fun things (I am in my 20s now and having bilateral hearing aids). Here are a few "cool" things for hearing aids (I am not affilated with these in any way):

    - Ear Gear: http://www.gearforears.com/ These are little covers and cords for hearing aids so they don't get wet or lost. I might have my PhD now, but my mother still worries--I bought them originally to wear when I was running to attach my hearing aids to my shirt. I have a pair without cords for yoga, working out, and other activities that might cause troubles :)

    - I've seen these on kids, charms for hearing aids, and advertised in various places: http://hayleighscherishedcharms.com/

    Nothing is going to stop her phenomenal self :)

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  15. Awww Kate such awesome results. We prayed soooo much for you guys this past week. I am so happy for you all. When I read your story it really makes me realize how insignificant some of the issues (I think are so major at the time) really are.
    We will continue our prayers to you and your family.

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  16. This is great news that her scans came back clear! I understand the hearing loss thing. When my son was young, we found out he was totally deaf in one ear; a hearing aid, surgery or nothing would help. We decided to not let that be a crutch for him and he had to learn to live with this disability. Today, he is a doctor in his residency program. I watched him interact with the children at a children's hospital in our state and thanked God that HE can make all things good! So very happy for the blessings that God has shown to little Lucy.

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  17. My Mother, who I am so ever close with, was diagnosed with cancer yesterday. I have held on to the miracle of Lucy every moment since. Thank you for sharing of His magnificent healing ways. So many of us need it.

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