Wednesday, November 23, 2011

7 Floor Long

Yesterday we arrived at the hospital and it was just so so good to see Denny and Kayla. For whatever reason it felt like one night was 2 or 3 with out them. Oh how we long to all be home together again.

When it was time for some pain meds we realized that Kayla's IV was beginning to fail. She was in so much pain so we decided it was time to pull that last IV out. So, that was good. One less tube! Denny told me that the social worker came in and said that the results were in for the pathology test. We would be meeting in a private room at 4:00. You can imagine how our stomachs ached and our hearts pounded for the remaining few hours. I just kept thinking, ignorance is sometimes bliss. Sometimes not knowing... and thinking this is where we are now and this is all it is can be comforting. But then you know that knowledge is power. That without knowing, we don't know what our future entails. Denny and I went outside and had a loving talk about how we were both feeling and that no matter what the docs said, we love each other and would be there to fight for kayla. We prayed and cried and just waited. Donna stayed with Kayla when the social worker came in at about 3:55 to get us. We walked into this freezing cold private room which was set up like a conference room. Just a plastic hospital pitcher and some disposable cups for us to drink water from were on the table. We sat down and the conversation was long and annoying as we waited for the oncologist to arrive.

Finally she did. She sat down and took a deep breath and I could just read it all over her face. The "someone shot your dog" expression. I composed myself for a lot of it at first. I wanted to take very accurate and clear notes and be able to understand everything they were telling us. She confirmed what the doctor had thought when he spoke with us after surgery on Thursday. She not only had medullablastoma, but a very aggressive form called Anaplastic Medulloblastoma. Now, before you go and google it, please please please do NOT tell us what you have heard or what you have read. We got the very raw and real facts from the oncologist. If you want to google it, go ahead. Just please keep it to yourselves. Kayla will come home to rest in a few days for only a few weeks. Then, just as she starts to recover she will begin her treatments. They will be aggressive. Over all we are looking at about 8-10 months before her exhausted body will get a chance to rest. Maybe more. I am terrified. I can't imagine how she will do during this. Each child is different. So, be on the look out for pretty scarfs and hats. It's going to be a chilly winter for our baby girl.

As far as me working? I have no idea how and when I will be able to. Once we get a real clear schedule maybe I can work a little? They aren't sure if she will be able to go to school or not. We are about to start cold and flu season. Her immune system will not be able to tolerate getting even a cold. I had the idea last night that maybe somehow I could get a computer for Kayla's class room and then at certain times of day, we could skype in and listen to the lessons. I don't know if that is even possible yet. I just know she is going to miss her friends so much! It breaks my heart. This is the most pain Denny and I have felt in our whole lives. It's any parents worst night mare. I keep waiting for someone to yell out, just kidding!!!! And no one does.

I am already feeling my soul harden and my smile start to diminish. I am hoping that is just today. For some reason, it's always like this when I'm away from Kayla. Denny too. As soon as we are with her, it's so much better.

Welcome to 7 Long:
Her new room is beautiful! It's purple!!! Her favorite color. The beds are big and nice. There are small flat screen tv's at the foot of each bed. They even have a wii connected to each one.  It's a shared room with one other person, but for now, the bed is empty next to her. The bathroom is in their room! No more walking the halls to go shower or use the potty. I have a feeling we will be making some incredible friends here. There are kids walking the halls with those beautiful shiny heads. There is even a coffee pot for parents. It's a beautiful floor. It is so quiet and clean. We are trying to see all the positive sides of this new second home. We aren't sure when they will discharge us so that we can spend some very important time at home recovering and working on her strength yet, but we hope it's soon. Today the doctor cleared me to give Kayla a real shower and even gently wash her hair. I am terrified of that too. Kayla was sad about not being home for Thanksgiving, but I promised her that what ever day we get home, we will celebrate it!

Ok, that is really all I can share at the moment. I am having a hard time today.

Important:
I just thought of one really important thing though. Kayla has only known the really sad things about Cancer. She knows her dog died of it. She knows Denny's aunt Cece died of it. She knows my dad is so sick he can't go anywhere from it (for years now!). I want to protect her until we can teach her more about it before anyone uses that word in front of her. For now, she knows that Dr. Gupta got the whole bump out. When she is home we will tell her that they have more things they need to do to keep the bump away. That is all she needs to understand for now. So, please, if you happen to be around her, please please don't use the word "cancer". I can't bare her going through the thoughts that would follow that word.

38 comments:

  1. Yours is a family of amazing strength and love. I am so sorry there is more to do, but by putting one foot in front of the other, you will all get through this. Love Christine and family

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  2. Annie and Denny, I hope that you both know how much I adore you. I know that you had prayed that this day would never happen. I am so sorry that Kayla's battle is not over. I have no real words of wisdom. I just want you to know that I am here for you and that I love you all. Please give Kayla a hug from the Wu Family and tell her that we miss her and love her.

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  3. Our prayers continue for you all. Your are such amazing spirits. We are part of your army who wants to help you however we can. God bless and protect you. Love, Mary and Frank Hoburg

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  4. Oh Annie I am so sorry to hear this news. I saw the title of your post and knew what it was going to say. We were on 6 Long. I was told of the difference between the two floors. I'll be wearing my Livestrong bracelet for Kayla until she's back to 100%. I'll check in with Shannon's doctor at UCSF too. He specializes in pediatric pain management. All our love and best wishes to you all. Kayla is going to win this battle. Take it one minute at a time Annie. You will all make it through this.

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  5. Dear Annie and family,
    I met you at Tiffany Johnson's wedding. I am her Aunt Julie. I started following your blog since Cindi mentioned your daughter to me. We have been down this road, so it is very familiar to us. Our daughter Kristin was diagnosed with a Medullobastoma at the age of 2 years 9 months when I was 6 months pregnant with our son Parker. KRISTIN IS NOW 17!!!! The treatment was really tough to go through for Kristin and the family. When Kristin was diagnosed there was a 70% survival rate, so we only thought of her being in that 70%! Stay focused on the ultimate goal and try not to listen to all the sad stories. You are so lucky to have your friend to help advocate for Kayla. That was some really sound advice a nurse gave us right away at UC Davis where Kristin was treated - there were times when we had to go head to head with on call residents who wanted to do something that seemed wrong to us. We always insisted on contacting "our" doctor before changing the protocol. You're right not to go online and research her tumor. There is way too much information to just worry about. Put your faith in your doctors - they are the only ones qualified to give you advice. Friends and family will mean well in giving advice, but at times it tends to just put doubt in your head. You are doing the right thing for Kayla. Kristin had 9 months of chemotherapy followed by radiation of her brain and spine. She has been cancer free since July 1998 and the doctors see her every year just to say "hi"!

    We will keep Kayla in our prayers and we look forward to hearing the good news at the end of this journey!!!

    Julie Matheson
    Granite Bay, CA

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  6. Annie, I'm keeping you and your family in my thoughts and prayers.

    If you need some nice scarves for Kayla here is a good resource:
    http://www.4women.com/fabrics/girls/

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  7. Michelle MacPhearsonNovember 23, 2011 at 10:30 AM

    I'll keep all of you, and especially Kayla, in my thoughts and prayers.

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  8. My sweet friends. We and an entire community are here to help you. Wherever there is a need, whatever it may be we are all here for you and we will help you! There is great strength surrounding you. Prayers, love, helping hands, meals, rides, errands, babysitting, fund raising. All will be well. Kayla will be well it will just take some time.

    With great love, Nicole and Henry Choi

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  9. People all over Marin County are sobbing right now. You are not alone. I am so very sorry. She is strong. And so are you. MUCH love to all of you.
    - Jennifer Pritchard

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  10. Sending you the biggest hug in the world. Whatever you need, whenever you need it I am here. Love you guys! There are no words... Hang in there my friend. Sending prayers your way like always....

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  11. Wow. I deff. was not expecting this result. I am SOOO very sorry. If I could I would tell you "Just kidding", just to take this away from you. That is sooo rough. I can't imagine what you are feeling right now. I really can't. It is a parent's worst night mare that is for sure. I feel comfort in knowing you have the best family and best support system in the world. I was a student on an oncology floor and have seen adults beat horrible forms of cancer (and remember, kids are stronger/heal faster than adults). I hope that is some hope to hold on to for you. And your faith in God. God has these crazy plans that just NEVER make sense sometimes. But don't ever loose hope or faith. That is one important thing to never loose now matter what. If you need anything at all, to talk, or vent. Let me know. I am sure you have tons of people there for you so that is comforting. Try not to let this dash your hope and good spirits!! Don't let this ruin it for you. I know it sounds stupid, but you are so positive, through all of this, and I am sure Kayla is sensing that. On the other hand get all the support you need and let it out. You need that right now. I really hope and pray that everything gets better for you all soon. And again I am so sorry that you are going through this. Let us know if you need anything!!!<3 All my love, you and your whole family<3<3<3. As for googling... yes do NOT google it. Listen to the DRs... Googling can give us all kinds of crazy answers.

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  12. I have a sneaking suspicion we're all going to be in awe, marvelling at how mighty little Kayla kicks the c-word's caboose.

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  13. Oh, Annie. We are so very sorry to hear the news of the next part of your journey to Kayla's recovery.

    Your post is remarkable in so many ways. I'm in awe of your strength and focus communicating this news to us. Also, I am so glad you asked readers and friends to not share advice, knowledge or hypotheses. You have the best and most accurate information for your child from the doctors. You can count on us giving cheers, love and support as Kayla wins this battle with her family by her side!

    A handknit purple scarf and hat is in the works from Cousin Allie. You all will be in our thoughts constantly. Jeff and Evan send big hugs!

    xoxo Allie

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  14. Mary,Frank and Nicole you are right - Annie and Denny- there is an ARMY of folks here with you in Kayla's (and mom, dad and Anthony's) fight... There is strength in numbers - count us in.... Sending love and prayers! Joe and Joanne

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  15. Dear, dear Annie, I hope you can feel all the love and caring coming cross-country from PA. Our hearts ache for you and family. We are glad you have such a terrific support system there. Allie has written the perfect post from us all, and I join her in sending big hugs from Uncle Ev, Will, me, Steve and family. Love, Auntie Ann

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  16. Annie and Denny - My thoughts are with you and your family during this extremely difficult time. We are praying for your family. Kayla is such a beautiful girl - we are praying for her and thinking of her daily.
    Sending lots of love and hugs,
    Lisa, Francesca and Gino Ravina

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  17. Annie... Our hearts break for you, yet we are ready to stand beside you and Warrior Kayla to fight this fight! All our love and prayers are with you at every moment... Please use us as your neverending source of love, strength and faith. xoxo The Doyle Family

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  18. We are so very sorry you are all going thru this difficult time. We are glad you have such a great support system! You are in our thoughts daily! Love Tomaz, Diana and Isabella

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  19. Annie and Denny, As others have said, I write with an aching heart. I just want to hug you. Our prayers are being said during the day and night and we will continue. I can help out with a computer and the associated gear for you if you get permission to take a computer into the class room. I have a wonderful friend who has already told me that he has a computer that he has just rehabilitated and he is HP's Top National Computer Support Guru and is ready to give it to you. We will see to camera, mic as well. Love, Susie

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  20. Dehnert Clan-You are never far from my thoughts. Annie, you have always been so strong-you and Denny are the perfect team. I know my flower girl will kick it in the patootie!

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  21. On this Thanksgiving eve, I am in such awe of you and Denny. You are the pillars of strength and grace. Operation Kayla has begun; in fact it is in full swing. I (like many, many others) are here to help - whatever it is you need. Please take care. Love, Melissa

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  22. Annie and Denny, I'm glad they have the rooms all dolled up. Nothing more cheerful than purple!! During your stays, I recommend lots of art supplies! You'll be surprised what you guys will come up with.
    Thinking purely positive thoughts for you.

    Lenny (Angry Bird parent, Bryn's Dad)

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  23. Anne,
    I am so very sorry, I feel sick for you and your family. I do want you to know that Shayla ( our red head) wants to give her hair to Kayla. I don't know if that is possible or if she would want red hair, but it is out there for you. I will still keep you in my prayers. Think you of you every day and your beautiful family. My heart feels for you. Please please let me know what I can do. Haley wants to give Kayla her Giant teddy bear( it is new and now in use and I think it need to love someone). If I could give you my strength I would give it all to get through this.

    I love you all.

    Yolanda

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  24. Dear Denny and Annie,

    The strength and love your family exhibits in nothing short of amazing. Kayla is one strong cookie and she will beat this. You all have so many people who care for, and love you. As mentioned by many, there is great strength in numbers - all those sending prayers and positive energy for your little girl. Don't loose your smile to defeat because then 'it' wins. It's ok to be sad and to vent, in fact, it's important. Then go back to the you, that you are, because that you is wonderful.

    Please know that your little fashionista has an endless supply of hats from you know where to keep her cute little mug warm.

    Love to you all,
    Chuck and Pam

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  25. I am awed by what you've written and by what everyone who loves you and your family has written. Like Haley, I would cut off my bleached hair and give it to Kayla in a nano-second if it would help her. If she wants it, let me know. Seriously. Keep strong, keep brave....all for Kayla. Know we all think about you and love you guys. Love, Patty & Terry

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  26. After tears and hugs with my family, I wanted to write to you but I just can't find the words. Please know that our thoughts and hopes for a complete recovery are with you. Love, Barbara, Chas and Claire

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  27. My name is Beth Jacobs. I work with Kayla's Aunt Nicole at Reed School. My heart aches for you and your family. Please know that there are so many people, even people you don't know like me, who are sending you positive thoughts and prayers and pulling for Kayla. If I can send anything for Kayla to do during her recovery-books, games, crafts, etc-please don't hesitate to contact me through Nicole.
    You are in my thoughts.
    Beth Jacobs

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  28. Oh, my Dear Annie & Denny, there really are no words that can truly say what you all are going through right now but just know that our thoughts and prayers are with you every minute of the day and the comments above are so true - Operation Kayla has begun and I know will continue to thrive through all of your friends and family members whom care so very much. We know this is such a difficult time right now but with both of you being so strong and especially Kayla being a very brave soldier, we have no doubt that she will BECOME EVEN MORE SPECIAL - if that's possible - AND STRONGER as a result of this journey! As you know, my niece Kristin went through this exact same journey approx. 15 years ago and is THRIVING today!!! You may have a long road ahead of you but we know with all the love and support that surrounds you every minute of the day, you all will overcome this and it will eventually just be a distant memory.

    Love you all so much and PLEASE don't hesitate to call us if there's anything we can do for any of you!

    Take care and hang in there - Cindi & Bob Johnson

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  29. I have been trying to follow this from vacation and this just breaks my heart. We are here to do what we can for all of you....please ask. We love you all!

    Leslie, Randy, Keira & Cam

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  30. Kayla and you, her family, already have an army of warriors ready to support you through each of the battles ahead; and will celebrate with you when the war is won! Just like the success stories shared by 2 families. One day, one moment, one nano-second at a time....whatever it takes....until victory.

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  31. I am so so sorry to hear this news. I have been and will continue to pray for Kayla every day.

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  32. Oh Annie.....We are so sorry to hear this news. My heart aches. I can't even begin to imagine how you are all feeling. I want so badly to give you all a big hug. Thank you for being so couragous and posting about this life changing journey. It truly puts everything into perspective. I sit hear with tears, but with hope that Kayla will be strong and will overcome and beat this! I know so many people have reached out, but truly if you all need anything we are here. Sending you love.

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  33. Dear Annie, words cannot express how my heart aches for you. No parent should have to endure such news and no child should have to deal with what lies ahead of Kayla. But, know that ours prayers will be with you all each and every day until Kayla beats this. There is a great deal of positive energy and hope in these messages. We will do ANYTHING to help. Nothing more to say but we love you!

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  34. Annie, I am so sad to hear this news. My heart goes out to you and your family. Kayla is so strong, so we'll just stay very positive over these next months. Can you post an address to send hats, etc in your next posting? I'd really like to do something to help and my mom makes really cool hats. Take care.

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  35. Annie, I'm so sorry to hear of this news, but I know Kayla is a strong little girl (she gets it from her mama!) and will kick cancer's ASS!

    Please don't hesitate to contact me if I can do ANYTHING to help with anything!

    Much love and LOTS of prayers!
    Lynn xoxo
    mikeandlynnshoop@aol.com

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  36. Hello Annie and Family,
    Just wanted to introduce myself, my name is Gina Mahan and I am Diane Mahan's daughter-in-law, married to Steve. Your very sad situation has brought back so many memories that we just experienced a couple of years ago with our daughter Kamryn that is now 8. Our heavy heart is with you and we feel your pain. We have spent countless hours on 7Long at UCSF. I would love to chat with you if you need someone to talk to or need resources. Kamryn spent 1 year going through a weekly chemo treatment plan for her tumor on her optic nerve. If at some point you would like Kamryn to talk to Kayla about her experience, I'm sure she would love to. Please know that our thoughts and prayers are with you and your family. We know all to well at what a difference it makes having an awesome support system.
    Big Hugs,
    Gina Mahan

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  37. I'm so very sad to hear this latest news Annie (I'm a day behind)! I was so hoping it wouldn't turn out this way - as I know you and everyone else were too. Please let me know if there's anything I can do. 11 Long was where my mom was when she went through her treatment (also during flu season) so I know it well. I'm thinking of you all!

    Stay strong,
    Erin S.

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  38. Thanks to the human heart by which we live,
    Thanks to its tenderness, its joys, and fears,
    To me the meanest flower that blows can give
    Thoughts that do often lie too deep for tears.

    please endure...my heart is with you guys in this journey.

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