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Monday, December 24, 2007 7:29 AM CST
Merry Christmas my darling.
Saturday, September 8, 2007 7:08 PM CDT
Happy Sweet 16 my darling!
Love, Mom, Dad and Katie
Monday, October 9, 2006 5:45 AM CDT
Hello,
I have decided to end the Caring Bridge page this week. Since I started this page to update friends and family on Christine’s journey ~we have valued it immeasurably. It has allowed us to communicate and put down into words all that Chris was going through with her brain tumor.
Since her passing I have used it to share our heartbreak and grief and received in return your countless prayers and words of encouragement and hope. Thank you!
Caring Bridge has been wonderful, but I realize they must hold a spot on their server to accommodate us, and other families could use this space.
Please continue to pray for all who battle and for the families who grieve the loss of their little ones.
Feel free to call or e-mail us anytime and I would love to keep in touch with all of you who have faithfully followed our family journey. Thank you for all that you have done to help us get through the most precious times with Christine and then the most difficult time in our lives!
God’s Blessings, Cathy
Wednesday, September 27, 2006 3:55 PM CDT
Hello,
Katie is finally feeling well again. It’s been a long 11days of having the flu. There’s no school this Wed, Thurs & Fri. so it’s a great chance for her to catch up on her missed homework. Luckily she has her friend Alyssa here to act as a study buddy!!
Work is going fine. A lot to learn but it is very interesting. I just need time adjusting to “working for the man” again and not being here to take care of sick kids and run the house full time. In due time.
My mom was injured in a car accident about a month ago and is not working right now so she has stayed here at the house taking care of Katie for me during the day. I guess God works in mysterious ways…Small blessings. Mom is feeling better and is thinking of going back to work next week if all goes well.
I’ll update more on David’s baseball season later on~ let’s just say they are having fun and the team will be much better next year.
Take care, Cathy
Monday, September 18, 2006 5:00 AM CDT
Hello,
Everything is going fine with the new job. Katie has the flu bug that must be going around. She’s missed school on Friday and again today. Kind of reminds me of a Harry Chapin song:
Harry Chapin- Cats in the Cradle
I've long since retired, my son's moved away
I called him up just the other day
I said, "I'd like to see you if you don't mind"
He said, "I'd love to, Dad, if I can find the time
You see my new job's a hassle and kids have the flu
But it's sure nice talking to you, Dad
It's been sure nice talking to you"
I’ll update more later on. Take care, Cathy
Friday, September 8, 2006 4:48 AM CDT
Happy Birthday, my beloved Christine!
Today you would be turning 15 and I imagine all the things you would want for your big day. A party of course would be in order and a few “must have cool things” would be on your list. You would always help plan the day because hey, you were the party planner girl!
But today you celebrate it in heaven and everyone who knows you here on earth will celebrate quietly in their hearts without you here to make a wish and blow out the candles. If I close my eyes I can see the 13 years I’ve watched you make a wish and blow out the candles without telling anyone what you wished for. I always wanted to know~ but you were steadfast in protecting that secret for fear it would not come true.
Somehow today I think I know what you wished for.
You would have wished that everything would turn out O.K. and you would get everything you wanted… it would have a happy ending.
In many ways your wish has come true because you are in Heaven and healed and in His glory.
And for that baby girl, I couldn’t wish for you more.
My heart is broken and I wish many things for myself and our family but all that I can do now is trust that you are happiest and safest in God’s loving hands. Happy Birthday darling!
Love. Mom
Monday, August 28, 2006 10:48 PM CDT
Hello my friend, (Warning: Long update~ so get a cup of coffee or a potty break first)
School is in full speed now. Sports are also consuming us. Katie is playing on the volleyball team again this year and recently was “promoted” to varsity level. She and another classmate, Alyssa, made the varsity team even though they are in the 5th grade! It appears that the varsity team is in need of additional players and the JV team was so large that they made the executive decision to move a couple girls up based on their abilities and they so deserve a chance to prove themselves! This is quite an accomplishment and we are so proud of both girls! Way to go!
David is coaching the boys JV baseball as well. He has never coached before and when he was approached I think he felt a little apprehensive. But he also had an overwhelming desire to see the boys at least have a team this year. The athletic director is busy now with volleyball and teaching ~that the team could not have been formed without the help of volunteer parents. He, of course, is excited and very nervous that the team won’t be ready in time for their game in a couple weeks. I’m sure they will do just fine. He is working with very young kids in the 4th-6th grades and at very different skill levels. Some have previously played ball on teams and some just plain don’t know which end of the bat to hold. What a challenge!
I have been offered a job starting next Tuesday. I went for the interview last Wednesday (yes, my 20th wedding anniversary date) and I found out today that I will be starting with Beauty Alliance, LLC as an administrative assistant to the Director of Distribution. This company operates the largest salon-only products in America. Here in Largo (10 minutes from my house) is their main distribution H.Q.
I have a long history in Materials management and I will be working with their promotional items and training/ education aspect of the job. Here is a quick sample overview of my “new job”:
Education Coordination
Education Flyers for the stores
Run reports as needed
New store opening orders for displays /new store opening orders for consignment
Assist in any admin work needed for the Dept.
Update stores on price changes
The absolute best thing about this job is they are able to offer me flexible hours to start at 8:30 after I drop Katie off in the am and work until 2:30 so I can pick her up (and it also allows me to attend all her games!) How cool is that???
Originally it was intended as a full time position but through discussion it was agreed that the work load could be managed in 30 hours. (Here’s where I do the Lucky-Me dance folks!!!) So… needless to say, I’m nervous and excited at the same time! Eventually it could lead to full time but for now it’s a great transition back into the workforce. I haven’t interviewed for a job in 18 years! 14 years at one company and 4 years at home. Talk about a fish out of water.
Thank you to Rhonda who tipped me off that this position was coming available. She has an excellent relationship built within her company and gave me the best possible referral and lead in the door. You are awesome- have I ever told you guys that before?
I guess one thing I’ve learned as a “cancer mom” is that all things are possible. As rough as things get or as totally unmanageable life becomes you pick yourself up and dust yourself off and keep going. If you are a cancer mom you know exactly what I’m talking about. It is different than the life’s set backs we face such as a loss of a job or a divorce.
I pray each night and I talk to Christine (of course throughout the day as well) and I tell her that no matter where I go or what I do~ I take her with me. Whether it is being at home or watching Katie play volleyball or David coach, she’ll always be there. I miss her beyond all comprehension. Starting back to work is a huge challenge for me partly because I am moving on when I don’t want to leave her behind.
Strange how this works out. It is a necessary evil to recovery for me. I need to stay active and contribute yet I want to stay “here”. Here, not as in the physical state but in the state of mind where we were every day as a team, the two of us working to get her better. My life revolved around her and now I am turning a page in my life without her. I hope I am strong enough this time.
Peace and prayers, Cathy
Wednesday, August 23, 2006 5:43 AM CDT
Happy 20th Anniversary to my dear husband!!!
David, there are so many things I want to say but most of all Thank you for being a wonderful husband and a great father! We love you!
Peace and prayers, Cathy
Tuesday, August 8, 2006 9:10 PM CDT
Hello,
School starts tomorrow and Katie is looking forward to it. I say that now~ but when 6:30-7:00 rolls around tomorrow morning she’ll be singing a different tune. She is definitely not a morning person and this summer has been very unstructured (lazy) for the both of us.
I do look forward to the schedule and the routine that it provides.
Some days are easier than others. Missing Christine every minute is part of the territory. So many beautiful memories she has given me. She was such a gift from God. I find myself laughing or crying (or both at the same time) when I come across something that she has touched or left an impression upon.
She always loved school supplies and she diligently put her initials on everything. Needless to say when we started looking at supplies we needed for Katie to go back to school I came across boxes of crayons and scissors with her initials on them in the supply totes. Yes, my little CC everywhere.
Some moments are filled with peace, some anger, some relief~ a whole basket full of emotions. I will probably wonder my entire life “why?” but never will know until the day I journey into heaven. Until then I still hope, pray and live… only now I have her memory to guide me to do the best I can do until we are together.
I was working on getting a link to Katia’s website but lack the talent and time when it’s so much easier to type in her address. Her Mom and Dad have put together a beautiful slideshow and wrote a song in memory to many of our little angels.Scroll down to the "I still dream about you" link. Christine is # 4 on the pictures and she looks so awesome on her 13th birthday. Thank you Tracy and Myron- you both did an excellent job on this. www.caringbridge.org/fl/katia_leukemiapage/
Thanks for checking in on us.
Peace and prayers, Cathy
Monday, July 31, 2006 9:20 PM CDT
A special Thank you to the folks that put two very beautiful bird feeders in Christine's garden at school. We went by there the other day and are very touched by the thoughtfulness. XXOO
Love, Cathy
Monday, July 17, 2006 7:54 AM CDT
Hello,
We’re home!
We had a wonderful trip visiting my family in Michigan. Everything was great including the weather!
We missed David and I missed being home surrounded by all of Christine’s things but her presence is still felt in my heart wherever I go.
I’ll update later.
Thanks for checking in on us.
Peace and prayers, Cathy
Sunday, June 25, 2006 7:27 PM CDT
Hello,
First of all: WELCOME HOME BAILEE!!!
Emily, we are anxiously awaiting for you next girl!
Summer has officially kicked off around here… water theme parks, movies, bowling, Vow renewal celebration, sponge docks at Tarpon Springs, packing for Michigan…
The highlight of this summer for Katie has to be when we went to Disney’s Typhoon Lagoon for the “So Hot Summer” concert starring Hannah Montana. Let me tell you, if you don’t know who Hannah Montana is you are living in a cave or do not know anyone under the age of 13!!! She is huge for the Disney scene. I personally think she is a Lizzy McGuire wanna-be but hey, you can’t fault Disney that Hilary Duff aged out of the system and grew her own wings.
Thank you very much Tom Doyle and Erin for giving us tickets!!!
I gotta’ admit though, when I first read the e-mail with all the details I wanted to hide it from Katie and pretend I never saw it. It went on to say that you had to be there early (like the will-call center opened at 6:30 AM people!!!!) and it’s expecting to close the park at 10:00 am due to code regulations on maximum capacity…hmm… 95* degrees outside and a sea of young girls running around crazy… can any of you share in my hesitation?
Now Disney is only a two hour drive from where we live and I have done this before with both girls (with Chris in a wheelchair to boot) and thought to myself why should I want to do this without her? I talked to David over the phone and explained my issues with this and he calmly said “You did it with Chris because it brought her joy and there’s no reason why you and Katie can’t continue to have joy”. O.K… We’ll go. Thank you, honey.
When Katie found out she almost fell over. She cupped her hands together and bowed down and said she wanted to worship Erin! I should have had this on tape. I crack up every time I think of this outburst of excitement on Katie’s face. Oh, to be young again and see things as simple as they should be and not as a mom who has to get up at 5:00am, walk a theme park in the heat, hear screaming crowds of fans and spend money but rather through the eyes of her child. Boy, what an awesome day and it was full of people but not nearly as bad as I imagined and the water rides were refreshing and I would do it all over again tomorrow. Well… maybe some other time. Thank you again Tom and Erin- you are so kind to have thought of us!
We did some other celebrating this past week. Lynn and Brian celebrated their 15th wedding anniversary with a vow renewal ceremony. It was beautiful to witness the love and family you’ve become in your 15 years of marriage. Rock On!!!!
Happy belated Birthday to Lily! Yes, I’m the worst Aunt but I promise to make it up to you.
Thank you to Stephanie and Shari (and anyone else I’m not aware of yet) who have been keeping Christine’s garden at school watered and weeded over the summer. Your both so awesome!
Tomorrow is a dentist appt. and I think I have to call my doctor for a possible UTI issue. More than you really need to know right???
Tuesday we will gear up to pack for Michigan. Katie and I are leaving on Thursday for 2+ weeks to spend time with my family in the great “green” north. I even have sweat pants packed for the cool nights. They say it’s really hot there but I know when the sun sets and its 60*- 65*degrees out we are freezing. David has to work during the annual plant shut down to get some electrical maintenance done. Lot’s of O.T. for him which affords us the tickets to Michigan and since he won’t be home anyway he won’t miss us. I say that until he runs out of clean underwear and frozen dinners, whichever comes first!
I know a lot sites update their main picture often but I can’t bring myself to change this one of Christine. I love it and she reminds me of Mona Lisa! Just look at that smile.
Peace and prayers, Cathy
Monday, June 19, 2006 8:59 AM CDT
Hello,
Each day is new challenge. One minute I’m at peace and feel Christine’s presence and the next I’m lost. I try to keep busy which is very important otherwise I could easily slip into being a recluse.
So many things to be grateful for and yet it doesn’t always register as good or a blessing because she is not here to share to them with us. Her presence in our lives was so significant it’s hard to go anywhere or do anything and not remember doing it with her or wondering how she would like it. It will always be a part of who I am, forever taking her with me.
I am at peace when I think of her in heaven. I know she is healed and perfect and in the best place with God. I now wonder more and more what heaven is like and don’t really fear my death as a tragedy because I would be reunited with Chris. Don’t get me wrong, I have a great need and purpose to stay here but should that day come when I am called into heaven I pray I will see her standing there waiting for me to welcome me into heaven and ask what’s for dinner and can we go to the mall?
Humor is so important.
Don’t get me started on certain subjects though… I’m highly opinionated.
Like… why are groups so eager to take God out of the classrooms?
Like… why people name their children what they do. Ja’Wanna is my pet peeve this week.
O.K. I’m rambling on and I should stop. May today be filled with love and strength and blessings to you.
Love, Cathy
Tuesday, June 6, 2006 8:12 PM CDT
Whew… we’re finally back from shopping for a bathing suit!!!
It really has not taken us that long to find one… I’m just procrastinating.
Every day is filled with love and longing to be with my little girl again and I miss her so.
Thanks for stopping by and checking in on us. Please continue to pray for all those who battle.
Blessings, Cathy
Wednesday, May 24, 2006 8:41 AM CDT
Katie is officially out of school for the summer! Yeah! Sleeping in is one of her favorite things she looks forward to in the summer. Each day we are trying to do something different. Today we need to get to the mall for a bathing suit. She is at the stage where bathing suits show “too much” and wears two or three layers over it to hide any evidence of her maturity. She dreaded going to summer camp because it involves swimming twice a week and she gets a lot of anxiety over this. Hopefully she will find a suit and be comfortable in her own skin. In time I suspect she will outgrow this awkward stage and be strutting around in short shorts and a midriff shirt and I’ll be telling her to get back into the house and find something that covers her. Growing up- what a privilege and a struggle.
This past week was the graduation for the 8th grade class at First Lutheran. A lot of emotions surround this time for me. I think to myself what if Chris had not gotten sick- she would have graduated this year. All her peers were there celebrating and I watched their beautiful faces as they performed in the Art show a couple weeks ago and it took me back to a time when 3 of the girls would stand in our living room performing for the mom’s when they arrived to pick them up. They had practiced for hours the Brittney Spears “She’s so Lucky” and were so excited to show everyone their talents. As I watched the talent show at school I could see how fast they have become young ladies and so much more confident and ready to fly onto the next chapter in their lives as they prepare to leave the safety and comfort of a small Christian school to go onto high school. Good Luck my dear friends!!!
David and I received an invitation to the graduation ceremony yet did not attend. I was glad that we were considered but knew we couldn’t sit through it without being the giant white elephant in the room. I heard reports later of the speeches given by all the graduating kids and how each of them mentioned how Christine had impacted their lives. Many of the kids knew Chris since pre-school and about half of the class entered after the 4th grade when Chris was diagnosed and never met her other than seeing her in the hallways or classroom very sporadically when she was able to attend. Even though these children never really knew her they felt that she had impacted their lives. I wish I could have been a fly on the wall to listen without falling apart. Some of the event was taped and I had a special delivery in my mailbox yesterday of the CD. I haven’t watched it yet- I’m waiting for the right time. Thank you Maria!
Well, I’m off to the mall for the dreaded bathing suit hunt. I can just see me now standing outside the dressing room door asking Katie to show me what it looks like and her yelling back “No way!”.
Wish us luck and lots of Starbuck’s to make it through the day.
Blessings, Cathy
Monday, May 15, 2006 5:11 PM CDT
Reflections at One Year:
An entire year has passed by without my sweet Christine here with us. We have struggled through the “First” of everything so far. The first Birthday, Christmas, Mother’s Day and the first anniversary of her death when she left us to live in Heaven. We never could have gotten through this without all the love and support we have been shown from our friends and family and even strangers who have traveled this path. Our deepest thanks to all of you!
I don’t always accept Christine’s death. Nor do I really forgive or pretend to understand. God must know all this or surly I would have been struck by lightning by now! I muddle through the daily tasks of living pretending to be O.K. because I really want to be O.K.
Some moments I hate life here without her and then there are other times when I realize I was a whole human being before her birth and remain a whole person. Only now~ I’m not as complete as I was when being her mother. She filled my being larger than I ever could have imagined. What an enormous joy she was and still is in my life.
They say to lose a parent, you lose part of your past.
To lose a spouse, you lose a part of your present.
To lose a child, you lose a part of your future.
I look through photos when she was very young and travel back in time. To remember how I felt then, about life. So much has changed my view.
Dear Christine, I miss you beyond belief. I have felt you and smelled you and believe in my heart that you are still near me. That is how I manage through the days until I can be with you again. I am humbled and honored to have been your Mom. I love you all the way to God and back!
Thanks for checking in and especially for leaving guestbook messages!
Love, Cathy
Monday, May 15, 2006 4:51 PM CDT
Reflections at One Year:
An entire year has passed by without my sweet Christine here with us. We have struggled through the “First” of everything so far. The first Birthday, Christmas, Mother’s Day and the first anniversary of her death when she left us to live in Heaven. We never could have gotten through this without all the love and support we have been shown from our friends and family and even strangers who have traveled this path. Our deepest thanks to all of you!
I don’t always accept Christine’s death. Nor do I really forgive or pretend to understand. God must know all this or surly I would have been struck by lightning by now! I muddle through the daily tasks of living pretending to be O.K. because I really want to be O.K.
Some moments I hate life here without her and then there are other times when I realize I was a whole human being before her birth and remain a whole person. Only now~ I’m not as complete as I was when being her mother. She filled my being larger than I ever could have imagined. What an enormous joy she was and still is in my life.
They say to lose a parent, you lose part of your past.
To lose a spouse, you lose a part of your present.
To lose a child, you lose a part of your future.
I look through photos when she was very young and travel back in time. To remember how I felt then, about life. So much has changed my view.
I miss Christine beyond belief. I have felt her and smelled her and believe in my heart that she is still near me. That is how I manage through the days until I can be with her again.
Thanks for checking in and especially for leaving guestbook messages!
Love, Cathy
Tuesday, May 9, 2006 5:47 AM CDT
I have some things to share with you about the One year anniversary of Christine’s passing, but wanted to post this poem right away written by Lynn. Thank you Lynn!
Heaven called you home too soon, precious butterfly,
I can’t believe it’s been a year since we had to say goodbye.
You were such a beautiful person, inside and out,
You taught us all life’s lessons, and what love is all about.
Now you soar around us, past the sun that shines so bright,
And flutter down to this Earth to watch it set into the night.
You’re in the joy of a favorite song, or the heart of a prayer,
In the sound of a baby’s cry, you will always be there.
And while you are in Heaven, hold onto all our love,
And one day we’ll be together, in the Kingdom up above.
For on Butterfly wings, or wings of your own,
To us you may be gone……but we are not alone.
~Lynn Hedrick~
Monday, May 1, 2006 5:53 AM CDT
Hello,
Things have been very busy here with my sisters in town. Jackie and her daughter, Lily, have left and Chris and Liz remain until Thursday. It’s always a riot to have everyone together but exhausting at the same time. We’ve accomplished a great deal yet it seems like a Chinese fire drill all day long. We all have so many options and things we’d like to do that were Christine’s favorite things to do that we bounce around and get maybe one or two things done. So far we have eaten at her two favorite restaurants and we went to the beach at sunset and scattered some of her ashes and today or tomorrow we must get to the mall! Of course, that is her all time favorite “happy place”.
I will update as things calm down. So many reflections and memories of my sweet Christine to share. I miss her more each day.
Thank you to everyone who has emailed, left a guestbook message or mailed a card to our family to remember Christine and honor how significant her loss has been to us. It warms my heart to know so many people care. Thank you!!!
Blessings and peace in your hearts.
Love, Cathy
Friday, April 21, 2006 8:30 AM CDT
We are keeping busy getting things ready for my sisters who will be town next week for the 1 year memorial for Christine. There is a list of places and things to do while they’re here. It is so hard to imagine a year has gone by. I feel as if it was yesterday yet a lifetime ago since she has left my touch. I miss her beyond words. I struggle sometimes to find the beauty in this world, when I know in my heart she would find the goodness and the strength even on her hardest days to keep her faith- then so can I…
I hope.
Love, Cathy
Saturday, April 15, 2006 8:16 AM CDT
Wishing you a Blessed and peaceful Easter.
Love, Cathy
Monday, April 10, 2006 7:19 AM CDT
Hello friends,
This weekend was productive yet hard on the emotions. We pulled out the Easter decorations and crafts the girls have done throughout the years. I came across one letter Christine wrote to the Easter Bunny. It was so sweet, she asked the EB to hide her eggs “easy” for her to find, but not “too easy”!
Included in her letter she stated that Easter is a celebration of Jesus. Some of my proudest moments and memories are of her and her faith. I always knew she loved God, but she had such an amazing connection to her faith. I truly believe children can understand and love God in a way that adults have shielded themselves from. Do adults grow weary and harden their hearts? I don’t know but I suspect kids have an innocent way of accepting what they can’t see and an abundant trust in the spirit. I wish I could go back to the days of innocence…don’t you?
This weekend we went up to the school and put some Easter decorations and a wind chime in Christine’s garden. I was pleasantly surprised by all the beautiful, new flowers that were in the garden. The middle school student council does an amazing job keeping the garden looking wonderful- Thank you to all who have a hand in the planning and planting of the flowers! It is truly heart touching to know so much care and love go into this area!
I’m still not back to work yet. A technical difficulty in letting go of the current office mgr. and it could result in keeping him. I’m hoping he leaves to find full time employment elsewhere (or they fire him) there, I said it… how cold of me. But time will tell. After the end of the month when my sisters come down for Christine’s 1 year memorial I will pursue other avenues if this position is not available. Please keep your fingers crossed this works out.
Please keep all the children and their families battling this disease in your prayers.
Love and blessings, Cathy
Wednesday, April 5, 2006 12:46 AM CDT
She swam in an ocean of laughter
She danced in a desert of grace
The way that she loved those around her
Was written all over face
-- david m. bailey, brain tumor survivor –
This is from his Coffee with the Angels CD and the song is titled "Her favorite Color Was Green"
I ordered this CD online and fell in love with this song. He sings this song questioning God about the loss of a young girl and it truly touches my heart. It is inspiring when it ends with God telling him that she still loves green and slides down rainbows... between the yellow and blue.
If you get a chance- visit his website and listen to the song sample.
Love and blessings, Cathy
Sunday, April 2, 2006 8:49 PM CDT
Not much to report right now.
Managing to get through the days and prepare for the 1 year memorial for Christine.
I’ll update later tomorrow…
Love, Cathy
Tuesday, March 28, 2006 2:05 PM CST
Hey, if I were a horse they’d have to shoot me…
Yes, I have a slight problem hanging on for a week now that’s interfering with me getting a thousand things done that I want done before I go back to work.
I’m talking sciatic nerve that runs up (or down?) your leg and into the buttocks. I guess that’s what you call a real pain in the wahzoo.
Ever have this problem? Do you know what I mean? Oh sure, I can sit and walk and lay down just now I have to remember to go really s-l-o-w. I’m not used to that. I have so much gardening to do. I have so much mental energy just no physical means to get it all done. But who am I to complain? Ha!
One of the nice things about not working and having an income is I told David since I didn’t have an income last year that it makes me a “dependent” on his income tax return so therefore I am the recipient of the return. Makes sense to me. David went along with it to keep peace in the household. I’m telling you this because I “shared” some of MY return with him by allowing him to buy a new BBQ grill. Boy, does that make him happy. I, of course have thrown him a package of meat each night and said “here, you cook”. I love a happy husband!
As I have been unable to do a lot of physical things it has forced me to occupy myself by going through pictures and keepsakes of Christine’s. The spare bedroom has become the place to stack everything up and now I have two reasons to organize this area. First: I’d like to make it a place where a person can actually enter the room without tripping over containers and photos and my sisters are planning a trip down later in April and I want it to be organized. Secondly: I need to.
Going through Christine’s journals and the special keepsakes has been difficult. I have finally made my way to the “Healing Bowl” and read the notes made to me from the friends at the Children’s Cancer Center. Shortly after Chris passed away the ladies gathered at the center and wrote on special parchment paper a special memory or message of hope, etc. and presented it to me in a beautiful blue healing bowl as it’s called. I unfolded each one and read it. This is the first time I was able to bring myself to do this. I placed them all in a scrapbook along with various notes and such. How thoughtful and loving each one of those notes is, straight from the heart. Thank you! My next project will be the funeral papers. Things like the registry where people signed as they arrived; I have no idea who all was there. That time was such a blur!
Next month is the 1 year mark since Christine has become an angel. I am in such disbelief that it could be a year. A lifetime, yet yesterday. My sisters are planning to come down and we will be making this a memorial type of day. I am planning certain things I know Christine would have loved to do. The day will have to include the beach and a stop at the library. I haven’t seen the new library since they built it. It’s been open over a year now and I ordered two plaques (one for Christine and one for Katie). So I think I am ready to go see it. I’ve heard they were up; I just haven’t gone to view it yet. The day would not be complete without Sam Seltzers Steak House. Her favorite place to eat…besides bourbon chicken at the mall and wings… Did I ever tell you how much she loved those places? Like a bazillion times!
O.k. That’s all for now, I have to get back to work. Katie wants my little cubby we call the computer/ laundry room/ make up counter to do her hair. She has the curling iron plugged in and wants to take over. Besides, she hungry and wants me to make her something to eat. Where’s Dave and the grill when I need him? Ugh!
Pray for all in need of health and remember to give blood if you are able.
More later… Love, Cathy
Wednesday, March 22, 2006 5:44 AM CST
Hello,
My computer is up and running. Thank God David knows what he’s doing. I just have to say to him that my computer is on the fritz and he fixes it. I don’t want to know what’s wrong or how much it’s going to cost to fix… just fix it. My Mom always said to marry a doctor or a plumber… that was before computers were in every home. Now, it’s marrying someone who knows something about computers, ha! I sure got lucky. Thank you honey!
I might be going back to work soon, more on that in a moment.
I was put in touch with a gal who does professional job resumes and job placement type of work and she is volunteering her time to help me navigate through the process. Thank you Mary Ann at the CCC!
I ran into a lot of sticky points (mostly brought on by myself) such as… why haven’t you worked in the last 4 years, were you in prison or something?
Do I risk talking about staying home to care for an ill child? No.
Do I not mention it and say I took time off to be a Mom? O.K.
The last thing I want is to be sitting in an interview and the conversation comes up about Christine and I emotionally hijack someone (or myself). That would be bad! So let’s not go there.
Her best advice to me was to network. Statistics show that more than 40% of folks get a better job suited for them and/or at a higher rate of pay than they do answering an ad in the paper. Hmmm. And by networking most likely they will already know my situation and it will become a “non-issue”.
I still struggle with what I want to be when I grow up. And now after being home and taking care of my children- hey, I like being here. But now the time has come to venture out of the house and do something. I liked working, I like to be needed and productive and contribute so here I am facing leaving the daytime nest again.
I do have a very exciting prospect starting April (after Katie’s spring break). I was discussing my situation with a gal I know through school and church and as fate would have it, I think it has given me an opportunity to get my feet wet again in the workplace. I would start work after Katie goes to school at 8:00 am and I could leave at 3:00pm in time to get her from school. This is a great chance to transition back into the workplace and still be avail for Katie. I would be working in an office environment and working for some of the kindest and warmest people I could ever ask for. How cool is that? After I start working there I’ll tell you more. Keep your fingers crossed it works out for all of us.
Lots of other changes in this past week or so… like I’ve decided to never listen to country music again.
Fortheloveofgod will they always make me cry? Like I need more reasons?
We are planning some special things as we approach the One Year mark of Christine becoming an angel. Can you believe it’s almost been one year? A lifetime yet just yesterday I held her in my arms. I miss you and love you all the way to God and back baby!
More later… Love, Cathy
Monday, March 20, 2006 7:08 AM CST
Sorry I haven’t updated sooner, my hard drive is acting up. I’m hoping tonight the new one is installed and I can have all my stuff back! Later…
Tuesday, March 7, 2006 8:27 AM CST
Hello,
Things have been busy around here, yet it seems nothing is getting done. How is that possible?
I began cleaning up Christine’s bead table, or should I say the bead mountain! That girl was such a collector. She collected stickers, books, journals and craft supplies galore! She cracks me up as I go through some of these items to determine which ones to keep and which to donate or toss. As difficult as this is, I am constantly reminded of her precious time here with us. I laugh and I cry when I come across certain things.
David cleaned out the back seat of his truck the other day and came across two books. One still had the bookmark in it from where she paused her reading and the other was a word search book (one of many) that she was working on. She dated the pages once the word search was completed and sometimes it would have a friends name on it that did a page while hanging out with her. These are the times when I want to scream “She wasn’t done yet here Lord, why?”
Possessions are the least of my concerns. I have some of the most cherished items of hers set aside so when I start scrap booking I can include them in there. It’s the “What would she be like today, tomorrow and in 5 years”? Would she drive at 16 or get married after college? How many children would she have? I know she would make the greatest mom possible. All of these questions that never will be answered in my lifetime, here on earth.
So I take comfort in knowing that she is safe, free from harm and has all her needs met in Heaven. This is truly how I make it through each day. I pray each night and ask God to give her a big hug and kiss and tell her how much we love and miss her. When I look at her picture and I tell her how much she is loved and that we’ll be together soon. I say goodnight and that I love her all the way to God and back and that I’ll be back to check on her. All the words each night that I would say to her when she was in her bed being tucked in. I can’t let go of this ritual.
Children change your life forever when they are born and they certainly change you when they die. Christine was and always will be an inspiration to me to overcome these obstacles and hardships because that is what she would do. She gives me strength and courage to face each day and I believe God provides the light to see the way. I just wish it wasn’t so dim sometimes.
Grief is a funny thing… it can tear you down or build a stronger foundation.
Blessings to you. Love, Cathy
Friday, February 24, 2006 7:53 AM CST
Hello,
In my last post I spoke of the wonderful organizations that provided a dream for Christine and the other ill children. I want to add that the reason her dream was so difficult to pin down was that every time Chris had an idea it was fulfilled first by friends.
Example: She wanted a puppy, a golden retriever so bad and when she mentioned it to the ladies at the Largo Library they got together and bought her Max! They called and asked first it would be o.k. They felt that Chris deserved a “bigger dream” and that if they provided her with a dog she could ask for something else. Before you knew it we had the cutest and best mannered dog anyone could ask for. He’s the son we never had.
When Christine said she wanted to go horseback riding on some Dude Ranch she was always invited to ride at Connie and Franks stable in Lakeland. Talk about an open invitation to your own private riding paradise for a child!
Then Chris thought about swimming with the dolphins and she was hooked up by the Pezzuti family along with their dear friend who worked at the Marine Aquarium and she swam in her own private pool with a rescued baby dolphin. How’s that for small miracles along the way?
Thank you to Rhonda and others who helped organize the fundraiser which allowed Christine and our family to continue to provide her many fun outings despite the financial hardships that a serious illness brings.
We have many blessings and wonderful memories to be thankful for. I think often of all the hardships that Christine endured and I quickly jump to the many happy memories. With so much suffering in the world and terrible things that can happen to people, especially our young vulnerable children, and I am filled with the comfort that Christine has given and received more love than most people feel in their long lifetime. Thank you for your prayers and loving embraces.
Love, Cathy and Family
Sunday, February 19, 2006 9:08 PM CST
Hello dear friends,
The case of the missing Hospice counselor is solved. She called me back after I left her a message and she said she was out sick for the day and had left me a message. I laughed when she said that… and then went on to explain that I visualized the look on the poor fellow who must have gotten that message. How this unsuspecting person must have been very relieved to know it was a wrong number. What’s the first thing that comes to your mind when you hear “Hospice” and an even better one is “Children’s Dream Fund”? All those images of the ill or dying- it couldn’t possibly ever happen to me or worse yet, my child! Yuck! Well, folks, they do. And if you ever thought these were uncomfortable, so did I.
It took me a very long time after Christine was diagnosed to return the phone call to her Dream Coordinator. Not that I didn’t want to her to have a dream, it’s just that I thought “my child will get better” and those dreams are for kids who aren’t going to get better. I was wrong. It is a place and time for children to forget how ill they are and how different their lives have been made due to an illness. To enable them to have a dream and realize that it can come true. No one knows the outcome of their treatment or illness. It doesn’t matter at the time-it’s all about living in the present and soaking up as much sunshine as you can squeeze out of the day.
It wasn’t until the fall of 2002 that the MRI showed progression of her disease that we knew that treatment was going to change to harsher and possibly experimental drugs. Christine deserved all the joy and anticipation of something fun to do and to look forward to. Gosh, the plans she milled around. So many possibilities…
So as difficult as it was to even think about, we proceeded to make plans. They changed a couple times, but we ended up going to the Hollywood premier of Cheaper by the Dozen, and to meet Hilary Duff. What an awesome time and we will always have those happy memories. Thank you Children’s Dream Fund for making the dream come true for my daughter.
So now when I hear the words: Children’s Dream Fund, Children’s Cancer Center and the Faces of Courage, I don’t think Ewe… how sad… sick kids… sad stuff… I think of all the people who make their daily living surrounded by and serving the people who know what it is really like to live. Thank you. Thank you for being there with us every step of the way.
Love, Cathy and Family
Thursday, February 16, 2006 2:44 PM CST
Hello dear friends,
Boy, you know things are bad when you’re stood up by a Hospice Counselor!
Not really… we had an appointment yesterday and she did not show. I haven’t heard back from her and I’m starting to get worried about her. Everything is fine on our end, this was just an appointment made about a month ago. I know she stated that after this next meeting (yesterday) that we would probably only need to contact her if we felt Kate needed help. That was comforting to me to hear a child social worker feel that Katie was in no immediate need. Katie has actually been doing very well in school, socially and in sports. She made Principle’s List this last quarter and loves it! We’re very proud of her.
Of course every day is filled with ups and downs. The downs are becoming fewer. There are more smiles when I see something that reminds me of Christine. Earlier there was pain and it’s slowly being replaced with different emotions. I feel her everywhere. I was at Michael’s Craft store today and as I walked by the beads I thought to myself “Christine, you’d love to see all the cool new stuff that’s out!”
I drove home wondering… what if God said I could have one more day with Chris. What would we do? Would we go to all her favorite places and eat all her favorite foods? I think I would want to sit and hold her every second unable to move. I would want to smell her and hear her voice and never let go. So there you have it, the two of us joined as Siamese twins traipsing around. Naturally, I would not want that – because it never would be enough and the thought of letting go at the end of the day would kill me.
We are keeping our friends close in prayer, especially Bailee, Emily and my Dad who just had surgery. We love you and hope healing comes soon.
Love, Cathy
Sunday, February 12, 2006 9:35 PM CST
Hello dear friends,
Many things have been happening here lately.
We went to a Wedding reception for our niece Heather on Saturday and a retirement dinner for Pastor O’Brien today. Keeping busy is always a good thing, but I would rather not have Pastor O’Brien retire if I had my druthers. He has (and will remain) a very big part of our lives. A while back one of the gentlemen on the Board of Elders wrote to the congregation asking for notes/ messages/ stories of ways the Pastor had influenced our lives. I submitted a heartfelt message that I figured would be placed in the scrapbook as my message to him. I was surprised and honored to have my message (along with a few other beautiful letters) read tonight at his dinner. I’ll share it with you if you want. O.K. You have no choice now… you’re committed to hearing it. Close out the page immediately or there’s no turning back.
Pastor O’Brien is a man who delivered a powerful message to my child and she heard it. She listened and learned a great deal. She trusted and believed in you and the Word of God that you teach.
My daughter, Christine admired you because you and your message mattered to her. Because it all mattered to you.
You’ve confirmed me into the Church. You’ve baptized my children. You counseled Christine in the Sacrament of Holy Communion. You helped console her when she was ill. You helped us bury her. You have been an incredible source of comfort and strength to our family. We are honored to have had you as our Pastor.
Thank you, Pastor O’Brien for being in our lives and helping us to learn, cope and understand God’s promise.
Blessings to you and we will miss you dearly.
Love, Cathy Clasen and Family
On a lighter note~ well, maybe… progress has been made in some areas of Katie opening up and talking about Christine. She had a dentist appointment last Tuesday and was totally freaked out about it. She knew it was for a second filling and was very scared. After an hour of begging and crying on Monday night for me to cancel the appointment she took a turn and said “I’ve thought about it and I don’t want to cancel the appointment. I should just go and get it over with instead of worrying about it for another whole week”. I told her how proud of her I was for showing such maturity. Of course, I knew I was not going to cancel no matter what! As we were driving to the dentist office after school on Tuesday she made the comment that no matter how scared she was she just told herself how much Christine had to do and she knew she that this was so small in comparison and that she would be just fine. I almost cried. Again I told her how proud I was of her bravery.
I think back of the appointments and the shots and the spinal taps and hospital stays and the hours Christine spent in the MRI machines and wondered just how much Katie really was aware of.
Perhaps when she gets older she will see it for what it really was but for now she amazes me with her awareness and compassion for this. I only pray and hope that when she is older they will have a cure for cancer.
We continue to pray for Bailee, Emily, Taylor, Chelsea, Molly, Katia, Justin, Conner, Robert, Christina, Billy and so many of our friends that we know and love from the Cancer Center. There are many others we follow on Caringbridge as well and say a prayer for each night. God’s mercy and healings to all of you.
Happy Valentines Day!
It’s also my dear friend Rhonda’s Birthday! What a great day to be born on- so full of love too!
Love, Cathy
Tuesday, February 7, 2006 12:25 AM CST
I read this somewhere and wanted to share:
The Lost Doll.
A father had given his little girl permission to go play with her friend for the afternoon. She had strict orders to be home at a certain time. The deadline passed, and the little girl didn't come home. The father was worried at first, then angry that his daughter had disobeyed him. As he was leaving the house to go get his daughter, he saw her coming down the sidewalk. She had her head down, and it was clear that she was distraught. When he reached her he asked her why she was late and what the matter was. She said that her friend Molly had lost her doll.
"So you are late because you helped look for the doll?" he asked.
"No daddy. I'm late because I helped Molly cry."
Thank you to everyone who has embraced me during my times of sorrow.
Love, Cathy
Tuesday, January 31, 2006 7:15 AM CST
Gretchen Campbell
Age: 14
Lutz Land O’ Lakes Woman’s Club
“You Raise Me Up”
The person in my life who raises me up is my best friend Christine Clasen. She raises me up every day because of everything she has gone through; she was diagnosed with cancer at age 10 when she was in the fourth grade. She has stayed strong through her surgeries, radiation, and chemotherapy; it seemed like things were stabilizing and then she learned that the tumor in her brain had grown larger. We just learned that she has thirteen new tumors on her brain. She is going to Duke University in North Carolina to see if they can help her with treatment. Even with set backs and treatment at Duke University she continues to fight.
She has stayed strong throughout all this time; when things are going wrong in my life and I think I have problems, I think of Christine. She has gone through things that are so much worse than I can ever imagine. This raises me up to know that if she can get through her struggles, I can do anything.
The lyrics in the song, “You Raise Me Up”, by Josh Groban, tell me that Christine doesn’t physically raise me up, but by the way she stays steadfast, she does “…raise me up, so I can stand on mountains”. To me “…being on her shoulders”, is being with her to give me more mental fortitude. Christine really does “…raise me up to be more than I can be”. When the refrain gets louder and louder, to me this represents Christine growing stronger and stronger; which gives me the resolve to be the strongest I can be for her while she goes through these tough times. She always says that I make her stronger, but really she is the one that makes me strong for her. Christine, you really raise me up.
I wrote the story above in April of 2003 when I was in the sixth grade, based on a song called “You Raise Me Up”, by Josh Groban. My story was about my best friend being diagnosed with cancer, and how very strong she was through her fight. Christine passed away this past April, and today it has been sixth months. I truly miss her more than I have ever missed anyone in my life. We became very close over her three and a half year fight; starting out with the day that she was diagnosed, November 16th of 2001, which also turned out to be the day that my brother was born. I’d known Christine since kindergarten, we were always friends but it wasn’t until about second grade that we started to become best friends. We were in the same classroom all day, but the time when we really started getting close were the times that we stayed after school waiting for our parents to get off of work. We would do gymnastics and she would try to teach me many things. They didn’t always look as good as hers considering she was a gymnast at this time, but she always seemed to have the most fun laughing at me trying to do it. Christine then started experiencing bad headaches, and would have to sit down and do nothing for our time outside. This was puzzling not only to me, but to her parents, so they took her for a CAT scan. The next day was what my church calls a fall fun festival. My grandparents took my sister and I due to my mom being in the hospital. Christine and I both were doing an after school karate program and we were supposed to perform that day at the festival. When I got there I was soon informed of the bad news. After she started receiving treatment many people were skeptical about what was going on, and some people are afraid of these types of situations. I think that this situation was what brought Christine and I so close. Not many people kept in close contact after she was diagnosed. Now I am glad that I didn’t let the title of being “A Cancer Patient” scare me away. Christine has changed my life in so many ways that it wouldn’t even be possible to tell you all of them. She showed me what true friendship really was, and she made me realize that you don’t know how good you have it until one day it is gone. When many people think of cancer patients they want to feel sorry for them, and tell them every second of the day how sorry they were that they got cancer, and how they wish they could take it away from them. Christine is definitely not that type of person, she knew that she was going to be stuck with this disease for awhile so she might as well deal with it, and pull the “cancer card” as often as she could. Once you figure out the method to her madness, she hated people feeling sorry for her. She wanted you to treat her just like you would anyone else. If you wanted her to do something such as go on a bike ride, which was often on the “to do list” at the Clasen house, you just had to keep pushing her and persuading her, and the key was never give in to her. Because if you knew Christine she could get basically anything that she wanted with a little whimper and her sad face. We went on many shopping trips, and enjoyed countless plates of bourbon chicken and dozens of chicken tacos. In the days, months, and years of her treatment there was a point where we stopped being friends and start becoming sisters. I was a usual at the Clasen house, and spent a lot of time with Christine. Since I had become so close to Christine, when she passed away my world seemed to come crashing down, and now that she is gone I miss her more than ever; her laugh, her sweet gentle voice, and her ability to do the disappearing act on me every five minutes. She will forever live in my heart and soul, and I will never forget her.
Christine Alise Clasen
September 8, 1991 – April 27, 2005
Monday, January 23, 2006 7:45 AM CST
Hello Friends and family,
We finally made our trip to Michigan to see snow.
I grew up in Michigan and have lived in Florida for 30 years now. Most of my family is there and we always seem to travel back in the summertime. Now I remember why I live in Florida~ my blood is way too thin to live in the Artic climate.
Since Katie has never seen snow we made a point to travel in the winter. One of those things we couldn’t put off any longer. Seize the day kind of thing. We took this opportunity to also travel over to Canada to scatter Christine’s ashes. You may remember me telling you about how Christine would always mention Canada when asked what she wanted to do. Simple little conversations such as “What do you want to do today?” and she would respond “Go to Canada”. Anyway, it became a standing joke with her and she shared this desire over and over again. Maybe it was a way she felt she could escape the everyday cancer journey here in her Florida world. As it turns out her best friend, Gretchen went with us to fulfill Christine’s wish. I have so much more to share about Gretchen- so stay tuned. I am so grateful Christine had her as a best friend. She is an amazing friend in every sense of the word. I hope to post this week an essay she wrote for school about Christine. Just Beautiful!
We found a quaint little old church in Windsor and scattered her ashes in the snowy grounds. It was so bitter cold with the wind blowing we didn’t make a long ceremonious deal about it. Imagine all of us Americans running around a Church sprinkling little bags of “sand like” material on the ground. It’s a miracle that no one called the authorities on us.
While in Windsor we took advantage of looking for the A-frame cottage my Dad built when my sisters and I were still young. It was in another town and we managed to get lost. Gee, no surprise there. There were seven of us in 2 different vehicles and we drove thru town and around the town several times until we reached our destination. We figured out where we went wrong – partly due to the fact that all the signs had snow on them and were unreadable. So the lesson here is – if you go north in the wintertime you had better know where you are going because the signs are not available to you. Hours later and with no patience or daylight left we saw the old A-frame. Boy, what memories we had at the simpler times in our lives. At least I can say I went back and Katie was able to see it. I don’t think it left much of an impression on her since it was dark and so bitter cold she didn’t get out of the car to walk to edge of the cliff to see the lake. A trip we all say one day we’ll look back and laugh. A loooong time from now.
The kids made snowmen and snow angels etc. all the things that are fun to do when your in snow country. We also went tobogganing and had a blast. The week went by too fast. Now we’ve been home 3 days and it seems as though we never left. Of course we have the memories.
The sweet memories of Christine surround me every moment. Sometimes I hear her or smell something that reminds me of her and I miss her even more- as if that’s even possible. I stood one night watching the snow fall through the outside light and it looked like long strands of fire. Picture the sparks from a sparkler on the 4th of July; it was snow falling so fast yet in slow motion you could follow it streaming down. I thought about how much Christine would appreciate this magnificent view and then I comforted myself with the thought that she is in heaven waiting to share the most magnificent view with us. How beautiful it must be and how excited she will be to share them with us. It raises the question of time: how time moves on Earth as opposed to Heaven. Is a year on Earth like a minute on Heaven’s time? Geez… We move through our lives so slowly and look back and say “where did the time go?” and realize it went way too fast and when we get to Heaven it all is clear. Perhaps we’ll see the plan was to prepare us for Heaven and if we are lucky we can say life was too short and we weren’t done yet. Though God said that we were.
Take care, hug, laugh and love with all your heart.
Blessings, Cathy
Thursday, January 19, 2006 10:09 PM CST
Hello all,
We just returned from Michigan this evening and I will update later tomorrow.
We did manage to go to Canada and scatter some of Christine's ashes. She always wanted to go there and we needed to make this happen. Of course not as we would have ever imagined~ but she is there.
More later... still some unpacking to do.
Thanks for checking in on us. I love the e-mails and messages.
All our love,
Cathy
Tuesday, January 3, 2006 9:23 PM CST
Dear God… I’d like to buy a vowel.
What is it? Why? What can I do? When does the pain stop?
Gimme a hint please!
I find myself wondering… if I let go of the pain, would I also have to let go of the courage and inspiration she was to me.
I find myself thinking… if I let go of the bad, do I run the risk of losing any of the good.
Every moment, every day was a gift. Finding that balance of what to hold onto is a struggle.
Sometimes I hear people say that they don’t know what to say.
Say nothing.
Or say whatever comes to your mind. Believe me, I’ve heard it all.
A neighbor, who with all good intentions said, “Well look at it this way, she never would have grown up to have a normal life. I mean, she wouldn’t be able to get married or have children.”
I’ll leave your own minds to decipher what she really meant to say. But I will tell you this… When those nights that we laid awake as poison dripped through her veins and IV poles surrounded us and we wept – her having the ability to bear children was the last thing on my mind.
Every person who has ever wondered what to say to a grieving parent can rest assure, with me anyways, that there is nothing you can say to make it all better- so don’t feel as though you have to try. Just try to be patient with us and don’t judge why we do what we do all the time. We’re incredible whacko’s and you can’t stop us.
I have been very lucky as I have some of the strongest and loving people in my life. A special thank you to the Caringbridge family who follow this journey!
Want some tips on how to talk to a parent after a loss of their child? Just say:
I think of you and your family.
I pray for you and your family.
We miss her smile, her presence as well.
Have you a strong support network? Do you need anything?
I remember the time she…
So simple, yet so hard to do.
I ran into a pre school teacher at Publix yesterday and she said she thought a lot about our family over the Christmas holiday. I knew what she meant and I made a comment about how fast the kids had to go back to school. I didn’t want to dwell on or relay our whole Christmas emotional heartbreak in the middle of the isle at Publix and she immediately knew I was diverting the subject to avoid a meltdown. That was amazing. She was intuitive and said “take care” and we both parted ways. What a sweetie Pie! See; clean and simple. If I wanted to open the doors to further conversation I would have but chose not to and she “got it”. This is where I hope she doesn’t think I’m being cold or despondent, just easier to walk away with some trace of mascara on my lashes and not down the front of my shirt. See, not judging me is helping me to cope.
After my ramblings I realize I set out to sort through tough issues of what to remember what to forget and I got sidetracked. Oh well, in time I suppose it will all fall into place. It’s not like cleaning out a closet and deciding what to keep and what to toss. It all will take time and perhaps the good Lord will let me buy a vowel in the meantime to bring me closer to the answer.
Thank you all for your wonderful support and love. Please continue to pray for all those who battle.
Blessings, Cathy
Sunday, January 1, 2006 2:06 PM CST
Wishing everyone a safe and happy New Year!
Blessings, Cathy
Tuesday, December 27, 2005 11:07 PM CST
Christmas was filled with its highs and lows. On one hand I wanted normalcy (where there could be no more normal) for Katie and our family. Yes, the tree and the house lights went up. The Christmas Eve family gathering still gathered. The food, the merriment went without a hitch. Openly that is. But I would find myself crying in the isles of Target and when driving down the street. I try each day to reserve some private time to cry and allow myself time to grieve. It doesn’t always work at a private or planned time.
We kept very busy with school plays, dinner at friends, company party and lots of sleepovers. The usual hustle and bustle of the holidays.
I did put a small tree in honor of Christine. It is filled with angels and her school Christmas pictures. You know the ones they make in elementary school that has their photo inside a wreath or a square of Popsicle sticks? Well, they are on there and I plan on extending it to family members as well. It will be the memorial tree and I have to wait until the time is right to extend the effort I need into this project. I don’t want to rush it and now that the holiday is over, I can devote more time to it. Gee… in time to put it away. Go figure. At least next year I am ready!
A couple weeks ago I planted some Poinsettias in her garden in the back yard, and I visited her school garden and noticed they planted them there as well. I hung some glittery snowflakes from the trees and ornaments around her sign. Looks good I must say. I wonder what the rain and wind has done to it through time. I’ll check it out again tomorrow.
The huge landmark for me was preparing Katie for the Christmas morning “let down”. You know the one where the kids open that last gift and look around as if to say “That’s it?” No matter what it seems like they always are looking for that last hidden treasure they’re certain Santa has left. I spoke to Katie ahead of time and explained that this year Christine would be getting her gifts in heaven and it would look like less gifts because of this. In the eyes of a child who is accustomed to seeing twice as many gifts under the tree in previous years to see only one set of gifts could be difficult. So I approached it with her ahead of time and she seemed very at ease with this and I felt maybe I shouldn’t have underestimated her ability to reason this issue on her own. Oh well… I tried. On Christmas morning she was perfectly fine. I had my usual meltdown after everyone left on Christmas Eve and David and I stood back to admire the tree and all the goodies. I felt incredibly sad that Christine would not be waking us up and the usual excitement to race to the tree and open her gifts. I missed shopping for her because of all the things she loved were staring me in the face. I would see something I knew she would love and I had to walk away.
Next year I hope to have a better plan. I think we will “adopt” a teenage girl who is on treatment or has a struggle in some sense and buy some things for her. I got this idea from some family members who sent a check to Christine’s school for her garden. Instead of a Christmas gift for her they sent a check. Very thoughtful I must say.
Our holiday has been filled with family, friends and people who have continued to keep us in their thoughts and prayers. Thank you and Blessings to you all.
Love, Cathy and family
P.S. Thank you, Carol with Cardinal Heath, and all the other families who have ordered over 50+ calendars (that’s just what I am aware of) from the Children’s Cancer Center! My girls are now lovingly referred to as the “Calendar girls”.
Tuesday Dec. 27
Hello, Thanks for checking in. I promise a full Christmas update later today.
Christmas is a great time to reflect on the reason of the season. Unfortunately, most of us celebrate it by running our minds crazy and our material needs soaring sky high. Yes, I’m a statistic.
This year I am trying to slow down. Imagine that…
But for once I realize it’s all so unnecessary.
I received an ornament from a dear friend Lynn that reads “Merry Christmas from Heaven”
I love you all dearly,
Now don’t shed a tear,
I’m spending my Christmas
With Jesus this year.”
This pretty much hit home with me as to why I feel somewhat at peace during this time. Imagine what this Christmas must be like with all the children in Heaven planning and anticipating the greatest Birthday of all.
All the earthly worrying, the uncertainties, the fear, the procedures, surgeries, physical disabilities and mental anguish… all that was on earth is now at peace. Celebrating. Rejoicing.
Of course, we all knew of the abundant joy, love and strength Christine gave us and that’s the hard part of being physically separated. This huge empty hole in my heart that once was physically filled with her presence is now slowly being replaced by memories. Those I cherish most.
So this year instead of worrying “Did I get the right gift?, Did I do enough?”, and feeling personally responsible for everyone’s happiness, I’ve realized that it isn’t up to me to provide that. They have to find it in their own hearts. Whew… the burden is lifted. Now I can enjoy the parts of Christmas that are most important to me- in my own heart, which right now is trying to repair itself from the loss this year and the gain Heaven has received. I’m sure my little party planner is there helping out with the details!
I wish you peace in your hearts this season.
Be safe, be happy, be good!
God’s Blessings, Cathy
Friday, December 2, 2005 11:39 PM CST
We continue to physically make it through each day. As the Christmas holiday approaches it becomes increasingly difficult to muddle through the days. Of course if anyone who has ever lost a child or even could imagine what a day without their child would be like can relate to this. I’m not telling you anything you don’t already know. This is the holiday that constantly throws the Hallmark Beautiful Family theme in your face.
Don’t get me wrong, I love Christmas. I love the spirit, the decorations, the baking. Everything about Christmas is beautiful. Everything that is except for my Christine isn’t here to share it with. This is where it becomes torture.
The one thing I hang my hopes on is that Katie will have these Christmas memories to cherish and carry on the traditions with her children. Talk about the burden of responsibility she has to carry. I try not to introduce that whole concept to her yet. That in itself is a whole different story.
Kate did meet with the Hospice pediatric councilor this week. She wasn’t happy about the whole deal, but participated anyway. That’s the advantage of her being 10 and not 17- she wasn’t given too many choices in the matter. It went relatively well. When I spoke to the councilor the next day, she explained that Katie has some very raw emotions. I am not surprised by this news. She is so quiet with me and rarely ever wants to talk about Christine. She never hesitates to talk about the good times but refuses to talk about the sad things. Crying is out of the question. She has made it known to David and me that we can “just leave the room if you’re ‘gonna cry”. The grief and sorrow is not something she wants to participate in or witness. Seeing her parents sad is something that she isn’t capable of handling right now. I guess the tears flow so freely with me that I can’t imagine what is going through her mind by not releasing some of the pain she is feeling. My suspicions are that she harbors such deep fear and sadness that she was to blame for the accident that caused Christine to go to the hospital and by talking about it causes her to feel terrible. What an enormous burden that has got to be on her. Hopefully in time and with talking to the councilor she will accept that crying is a natural and healing process that we all go through. I just wish her peace within herself to know that cancer and the medicines hurt Christine- not her. She hears the words, but just how much is really comprehended and understood remains a mystery. Pray the councilor can get to the jest of this one!!!
I’m off to get some sleep because tomorrow is a busy day.
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Special prayer request for Emily L. who has relapsed with leukemia. Her family is facing many decisions for treatment and could use your prayers to lift them in spirit and guide her caregivers.
Please keep a dear friend of ours, Bailee, in your prayers. She is still in PICU in New York and is battling an infection in her lungs.
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It’s that time of year again…. The Children’s Cancer Center is selling the 2006 calendars and Christmas cards. I have some calendars here and all the local Publix supermarkets will have their displays up that sell the cards. If you are interested in a calendar they are $15.00 and checks can be made out to the Children’s Cancer Center. This year is really special to me because Christine and Katie’s artwork was selected for the months of Feb. and June. Very cool…. Let me know if you’d like one (or two) for the folks on your holiday gift list.
Be safe, be happy, be good!
God’s Blessings, Cathy
Monday, November 21, 2005 7:47 AM CST
The flower that follows the sun does so even on cloudy days. –Leighton
Wishing everyone a safe and happy Thanksgiving!
I bought the turkey and all the fixings, so I guess I’m at the point of no return when it comes to cooking this year. As much as my heart is not into it ~ I still want the “normalcy” in our lives for Katie’s sake.
I’ve debated making reservations somewhere or possibly traveling to some beach bungalow for the holiday, but frankly it doesn’t change the fact that Christine isn’t here with us to celebrate. There is nowhere to run or hide. After this first year without her here I will consider doing something else, but for now we’ll stay.
When I last spoke to the Hospice councilor she had suggested that some folks set a place setting at the table for their loved one. I personally thought that sounded too morbid for my liking. At the end though, she explained that it signifies the absence of your loved and makes it so others that are joining you for the holiday don’t feel as if they have to pretend that someone is not missing. It’s O.K. to talk about them and mention their name and not act as if everything is just fine. Of course, I still will not set a place setting for Chris, but the idea of everyone walking around afraid to mention her name will be harder to bear than if we talked about her throughout the day. She is a huge part of our lives and I enjoy hearing her name and her crazy stories so much.
The councilor did mention that at Christmas time some families dedicate a small tree inside their home in memory of their loved one. They take all the ornaments that they have made through the school years, etc. and place it on the small tree. I do like this idea and will expand it to include a picture ornament of all the beloved family members and friends who aren’t with us this year. They have a special place in our hearts and I like the idea of being able to look at their picture and remember them and have them close to us at this special time of the year.
Have a blessed and memorable holiday with your family.
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Special prayer request for Emily L. who has just found out this week she has relapsed with leukemia. Her family is facing many decisions for treatment and could use your prayers to lift them in spirit and guide her caregivers.
Please keep a dear friend of ours, Bailee, in your prayers. She is still at Sloan Kettering PICU in New York and is battling an infection in her lungs right now.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
It’s that time of year again…. The Children’s Cancer Center is selling the 2006 calendars and Christmas cards. I have some calendars here and all the local Publix supermarkets will have their displays up that sell the cards. If you are interested in a calendar they are $15.00 and checks can be made out to the Children’s Cancer Center. This year is really special to me because Christine and Katie’s artwork was selected for the months of Feb. and June. Very cool…. Let me know if you’d like one (or two) for the folks on your holiday gift list.
Be safe, be happy, be good!
God’s Blessings, Cathy
Sunday, November 13, 2005 8:32 PM CST
The holidays are fast approaching and I’m not sure how we’ll manage. This week is going to be particularly tough on my heart. On Nov.16th, 2001, Christine was diagnosed with a brain tumor. Four short years and yet a lifetime ago.
As I look back and replay in my mind all the events and the learning; spiritually and physically~ we all have traveled so far. We are weary and broken, yet stronger. I realize how fragile the spirit and the body really are. This is where I kind of figure my life is a mosaic. As we watch our situation slowly crack and give in to the tension and forces of nature, standing helplessly observing the breaking without any means to prevent or fix it.
We have two choices: Allow them to remain broken just as they are or to carefully gather them and place them just so, so that they can be glued together to make a beautiful piece. Of course, they never will be the same. They were never intended to replace what they once were. They are to become something else that can be just as beautiful and useful as they once were or more.
My mosaic would definitely be filled with Christine pieces, my family, my life, and my friends. The glue that holds it all together is God. I only hope that I can make something meaningful and wonderful out of it. Some days this seems impossible to accomplish. Yet the choice to leave them shattered lying there to continually cut is not an option.
Thanksgiving is a time to be grateful and rejoice in the bounty of the love given to us. Yet today I feel robbed of the one little girl who loved and trusted and gave so much of herself to me, yet I am grateful and blessed to have been her Mother.
I am grateful for my family.
I am grateful to receive the love shown to my family by our friends, Church and our community.
I am grateful to live in a land that is free to pray.
Above all, I am grateful to know our Lord is merciful and loving and is always there for us.
Of course this is awfully deep stuff… so I’ll share with you some other quirky things I’m grateful for:
(They are listed in no particular order, so hear goes):
Starbucks Drive- Thru
Public Bakery
Stretch jeans
Hair dye
Cappuccino- Kahlua -Fudge Ice Cream
A traffic light that turns green before you come to a stop
Back scratches
Cold beer
The list goes on and on, but I think you get the picture. What are you grateful for? Please share what you are giving thanks for this Thanksgiving holiday. I’d love to hear from you.
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Please keep a dear friend of ours, Bailee, in your prayers. She is still at Sloan Kettering PICU in New York and is battling an infection in her lungs right now.
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Mark Saturday, November 19th, on your calendar for the First Lutheran Craft Bazaar, 9am-2pm. It’s a craft sale they hold every year and this year they have opened it up to other business’s to rent tables. So far we have: Mary Kay, Longaberger Baskets, Avon, Tastefully Simple, Watkins products and Fuller Brush reps on hand to show you their products. The list is growing so be sure to come out and walk around. Holiday gifts galore. Food will be available and a yummy bake sale also!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
It’s that time of year again…. The Children’s Cancer Center is selling the 2006 calendars and Christmas cards. I have some calendars here and all the local Publix supermarkets will have their displays up that sell the cards. If you are interested in a calendar they are $15.00 and checks can be made out to the Children’s Cancer Center. This year is really special to me because Christine and Katie’s artwork was selected for the months of Feb. and June. Very cool…. Let me know if you’d like one (or two) for the folks on your holiday gift list.
Be safe, be happy, be good! Love, Cathy
Tuesday, November 8, 2005 10:56 PM CST
Please keep a dear friend of ours, Bailee, in your prayers. She is still at Sloan Kettering PICU in New York and is battling an infection in her lungs right now.
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Mark Saturday, November 19th, on your calendar for the First Lutheran Craft Bazaar, 9am-2pm. It’s a craft sale they hold every year and this year they have opened it up to other business’s to rent tables. So far we have: Mary Kay, Longaberger Baskets, Avon, Tastefully Simple, Watkins products and Fuller Brush reps on hand to show you their products. The list is growing so be sure to come out and walk around. Holiday gifts galore. Food will be available and a yummy bake sale also!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
It’s that time of year again…. The Children’s Cancer Center is selling the 2006 calendars and Christmas cards. I have some calendars here and all the local Publix supermarkets will have their displays up that sell the cards. If you are interested in a calendar they are $15.00 and checks can be made out to the Children’s Cancer Center. This year is really special to me because Christine and Katie’s artwork was selected for the months of Feb. and June. Very cool…. Let me know if you’d like one (or two) for the folks on your holiday gift list.
Be safe, be happy, be good! Love, Cathy
Saturday, October 29, 2005 7:19 AM CDT
It’s hard to imagine 6 months without my sweet girl here to hold and laugh with. At first, I believe shock protected me from the reality. How we got through watching her in the hospital to her funeral arrangements… too much to comprehend in the span of a week. That I believe is the safety mechanism God plants within us to shelter us from the shock.
As time slowly moves on I have experienced all the typical grieving stages. Sometimes they are all in one day ~other times they are spaced out.
I am in the process of removing the photos from the collages that were made for her service. It has taken me 3 days to just remove them. I know it will be a long time before I can place them in a photo album and have it done up nicely. The tears hold me back from making any fast progress. Wet eyes, fingers, runny nose…. The memories span her sweet short lifetime. I take a moment on each photo to remember the where, when, and absorb all the sweetness of her face that I can.
I look at the photos from when she was born and through the years that she was a healthy, vibrant, young child full of energy. November 2001 changed all that for her. Immediately her active life was halted because of the surgeries and radiation treatments. Through physical, occupational and speech therapy she rebounded much of what was lost. In October of 2002 she re- entered the world of new challenges of metastic disease. Additional surgeries, meningitis, stronger chemo’s pumping through her veins weakened her further. It just made the challenge a little more difficult is all. Nothing she couldn’t handle because she trusted and always had hope.
For 3 ½ years she fought battles no child should ever have to. I have the hardest time looking at the pictures of her age 0- 10 when she was healthy. Why? How? It was a shock to learn this could happen to our family (any family) the world of childhood cancer was the last thing I ever knew. Shattered. Then we picked up the pieces, a process in which we became all too familiar. A mosaic is how I look at it. More on that subject next time.
Love, Cathy
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It’s that time of year again…. The Children’s Cancer Center is selling the 2006 calendars and Christmas cards. I have some calendars here and all the local Publix supermarkets will have their displays up that sell the cards. If you are interested in a calendar they are $15.00 and checks can be made out to the Children’s Cancer Center. This year is really special to me because Christine and Katie’s artwork was selected for the months of Feb. and June. Very cool…. Let me know if you’d like one (or two) for the folks on your holiday gift list.
Friday, October 28, 2005 5:40 AM CDT
The following poem was written for me by a dear friend.
I wish you a Happy Birthday today, Lynn!!! We are blessed to have you in our lives.
Mom to Mom and Friend to Friend,
My prayers are stretching from end to end.
My heart is aching, mostly breaking, from all the pain you feel.
But then I know there’s comfort when upon my knees I kneel.
Almighty God in Heaven, Creator of this child,
Come wrap your arms around her and hold her for awhile.
Hold onto her dear Lord, for as long as it need be,
And if your arms get tired, then have her call on me.
For I will always be here, please help her understand
To laugh with or to cry with, to lend a helping hand.
So, when you feel you need me, don’t hesitate to call,
For it’s love that built this friendship, that’s the greatest gift of all.
By Lynn Hedrick
Thank you to all who wrote and my family who sent flowers to us as a special remembrance of the 6 months anniversary of Christine’s passing. Many people don’t know what to say or do and I love when people talk about Chris and remember the special times. Thank you.
Love, Cathy
Monday, October 24, 2005 8:07 AM CDT
Well, we managed to dodge another hurricane in our area. Wilma has cancelled school for today and the Fall Fun Festival this past Saturday~ but that so far has been the only negative setback. I can live with that.
Last week as the storm sat over the tip of Mexico its path was uncertain once it got out into the open waters. Of course when you live in Florida you kind of stay prepared throughout the year with water, batteries, canned food etc. But I was faced with “what do I take if we have to evacuate?”
It’s funny how quickly your mind runs through the list:
Important Papers, Photo’s, Christine’s ashes. How bazaar is that? I couldn’t bear to leave and not take her with us.
Now that I have an idea of what we’re going to take I think back to the folks stranded on the interstate in Texas this summer. What if we get stranded in a dirty shelter? What if rains flood the area and my car is under water? O.K. back to the drawing board… Maybe I don’t need to put all my “precious things” in my car only to be swept away or looted in a parking lot of a shelter. What to do???
Do you have a precious item you couldn’t stand to leave behind? Is so, what is it? How would you handle this situation?
On Sunday, Katie and I ran to Michael’s for some craft items and then next door to PetSmart for dog food. While we were there we decided to get a fish. (What was I thinking?) So, now we are the proud owners of a Betta fish. She’s dark sapphire blue and her name is “Wilma”. Kate originally wanted to name her Meredith (her all time favorite name for everything) but changed her mind when she heard the suggestion “Wilma”. I’m o.k. with another pet~ so long as it doesn’t have hair and I can flush it.
Volleyball has ended and Basketball has begun. Katie is enjoying the practices so far. They have their first game scheduled for tomorrow but I’m not sure that is still on.
Mark down Saturday, November 19th on your calendar for the First Lutheran Craft Bazaar, 9am-2pm. It’s a craft sale they hold every year and this year they have opened it up to other business’s to rent tables. So far we have: Mary Kay, Longaberger Baskets, Avon, Watkins products and Fuller Brush reps on hand to show you their products. The list is growing so be sure to come out and walk around. Food will be available and a yummy bake sale also!
Be safe, be happy, be good! Love, Cathy
P.S. Thank you Aunt Jackie and Uncle Art for the video you made of the July family gathering. It is awesome and I shall cherish it forever. Oh no… I just thought of another item I have to take with me if we have to evacuate. You do have other copies right???
Monday, October 17, 2005 10:28 PM CDT
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. --Albert Einstein
I do believe in miracles. They are so obvious to me at times and hidden the next. If I search long and hard, I can find them. The Holy Spirit provides that for me.
There has to be some meaning in all this right? I mean would God actually give you someone and then grab them away from you so carelessly? I have to believe this is not the case. This is what I usually pray for~ the vision and strength to see them.
Pray for miracles- they are here.
Love, Cathy
Sunday, October 9, 2005 10:30 PM CDT
I mentioned in my last entry that I’d share my thoughts on prayer. Please note I was raised Catholic and now I’m Lutheran by choice. I was raised praying and I do believe in the power of prayer- just differently every day.
The wonderful power of prayer:
Please God help me through this day…
Help me pass this test…
Help me decide what’s best. The best job, the best car, the best...
Then there’s the big one: please God help my child. Heal my baby.
Why is everyone so eager to pray away their problems? If that really worked, today’s suffering would be ended.
Oops, I forgot about the devil. My, how this changes everything. Yep, he’s responsible.
So now we have the forces of good and evil.
I was raised on happy endings. It always started with “Once upon a time” and life was supposed to follow this pattern. All stories ended with the good overcoming evil.
Then reality hit. Boy, did that stink. We learned quickly that life is filled with bad people and bad things. This wasn’t just a scary story your folks were telling you about to help you avoid terrible outcomes. So I was taught to pray as a way to “prevent” bad things from happening. Then I figured out that I was praying for a whole lot more.
I pray to prevent bad things in the world, I pray for forgiveness when I do bad things and I pray for happy endings~ then I have all my bases covered, right?
Thank you God for food and shelter. Thank you God for my family and friends. Thank God I didn’t get in an accident today. Thank God for all things good.
So now I pray for comfort and understanding to accept the loss of my child. Gee, if my prayers worked the first time why am I praying for peace now?
It’s too late. My baby is not healed. She is not alive with me tonight sleeping in her own bed.
So what went wrong? Did I not pray hard enough? Did I not have enough people praying with me? Hardly.
So now here’s my problem: I hear people all day long saying “Thank God my prayers were answered”.
So why did your prayers get heard and not mine? Frankly, you people really irk me. The sad thing is I sometimes say that too. Why? Out of habit I suspect.
Our prayers are just that, a talk with God. Happy or sad, God hears them. The only thing I can understand is that He has the answer in the end and I have to trust Him and continue to talk to Him. He is the only one that can end in “Happily Ever After”.
This leads me to miracles. Why on earth are such mean, dumb people allowed to live past the age of 30? O.K. That’s another day.
Thank you for letting me journal and share my thoughts with you. I really think this is an outlet that lets me release a lot of grief.
Until then ~ please pray for all those who suffer.
Cathy
Saturday, October 1, 2005 8:56 PM CDT
O.K… Today I tried to trick myself. Actually, I tried to open Katie up a little more to me on the topic of Chris. As we were driving home from the mall and sitting at a very long red light, I looked over at her and said, “I just had a weird thought- I wonder if Christine is at home waiting for us and in Christine style- VERY upset we went to the mall without her”.
Katie said, “No”.
Oh well… I tried. I wanted to open the door to conversation and got nowhere with that one. I’ll try again tomorrow.
It’s so often that I do think to myself… what would Chris think about this or that, or where would she be right now (?) and I wanted to know if Katie also had these kinds of thoughts.
Everyone grieves according to their own schedule. I know as a mother that I will grieve differently than a 10-year-old sister, but I still want to hear Katie express her thoughts and share her sadness with me. Perhaps when she is older, or ready. I can only hope that I can see the signs and react accordingly. Right now I want to know that she isn’t just holding it all in because she doesn’t want to upset me or make me sad. That’s a lot for a little girl to cope with.
Katie loves to talk about the good times and will wear Christine’s clothes, etc. but never shares a sad or negative thought. Just the other day she said she wanted to be a French maid for Halloween. It was the costume that Christine wore last year. Kate tried it on and came out wearing it and I was flooded with memories~ good and sad at the same time.
At the Children’s Cancer Center meeting (the one for bereaved parents) that I attended a couple weeks ago- we were talking about building memories and memorializing the life of a child. Dr. Messina always talks about the importance of recognizing the physical and emotional separation for a minimum of one year. Little things like talking to them and being near their belongings…
I remember making a statement “Aren’t I Lucky”.
I still fold her laundry, make her bed and have her favorite foods in the house.
So many parents lose their only child (I didn’t).
So many parents lose their only daughter (I didn’t).
And then there’s the:
Parents who have their children abducted and never know where they are (I didn’t)
Parents lose a child quickly to an accident or sudden illness (I didn’t)
Parents who watch their children starve in a nation that can’t feed their families…
The list is absurd!
Why on God’s earth do I find comfort in this?
I don’t.
The pain is so deep and only by the Grace of God has it opened my eyes to the pain and suffering of others as well. I am not alone. Many Bible verses talk about pain, suffering and loss and I find comfort in knowing our God is there, and in control and always will be. It’s so easy to blame~ and I admit, I blamed God for everything. Next update I’ll tell you how I feel about the power of prayer… it doesn’t always work the way we think…
I found this on a fellow Caringbridge site (I follow so many of our friends daily) Welcome home Bailee and Jacob!
It is a song and I don’t know who the author is or who sings it, but if you recognize it
~ please let me know!
The pathway is broken
And the signs are unclear
And I don’t know the reason
Why You brought me here
But just because You love me
The way that You do
I’m gonna walk through the valley
If You want me to
Cause I’m not who I was
When I took my first step
And I’m clingin’ to the promise
You’re not through with me yet
So if all of these trials
Bring me closer to You
Then I will go through the fire
If You want me to
It may not be the way
I would have chosen
When You lead me through a world
that’s not my home
But You never said it would be easy
You only said I’ll never go alone
So when the whole world turns against me
And I’m all by myself
And I can’t hear You answer
my cries for help
I’ll remember the suff’ring
Your love put You through
And I will go through the valley
If you want me to
Thank you for following our journey. Please continue to pray for all those who are in pain or struggle with an illness.
Love, Cathy
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My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Friday, September 23, 2005 8:44 PM CDT
Emotion / i-‘mo-shan/ n : a usu. intense feeling (as love, hate, or despair)
Whew… talk about emotion. Daily life has taken on a new dimension of the meaning.
One minute- accepting:
The next, in disbelief and anger. I guess this all makes sense… so they tell me.
Thank You LORD for family and friends who understand.
Accepting: Our Christine is in Heaven. She’s safe and healed and never to be harmed or in need of anything. The Lord is taking care of her. How could you ask for more? Well, I do.
Disbelief: Everyday – every breath is without her here with us to share life and grow together. I feel robbed of the little girl I was given to raise and watch grow into a woman. Oh, the plans we had.
Each day I remind myself to only think of today- “stay in today”. Isn’t that what everyone tells us by experience? Well, I guess it’s true. Tomorrow is unknown and I can’t worry or waste today.
I’ve finished up the garden area. Well, not exactly… it will always be a work in progress. But the three sections are finished and I’ve added a little statue of a young girl holding a rabbit. Christine would have liked that. Next, I’m looking for a girl with a dog (Max will be very jealous if I don’t).
Katie is on the volleyball team this year. Three days this week they had games after school. It’s so much fun watching the girls play. They’ve learned so much so quickly. I’m impressed by all of them. Win or lose, they have fun.
As for David, he continues to go to work each day and plugs along as well as can be expected. He’s been doing some landscaping type volunteer work at the new Christian Life Center on Saturdays. He enjoys it and I think in the absence of going to Church he might be filling a spiritual need he has.
He plans on going again tomorrow. He’s taking a tree that Katie was given back in the early days of Brownies when all the little scouts were given a seedling in a pot. Ours has grown into quite a nice little tree and we don’t have a place in the yard to plant it. So tomorrow he is taking it to the school and hopefully they have a place picked out so he can start digging. :)
I’m considering looking for a part time job soon. I think getting out of the house might do me some good. I had such apathy towards everything until recently. I thought to myself “what does it matter?” when it came to other peoples issues and the workplace politics etc… but now I feel a need to contribute as a person and a wife/ mother. I think in the long run it will be good to get out of the house and into a routine. For so long “I was needed” to take care of Christine and that was the most rewarding job in the world. It’s never going to be matched or replaced.
Thank you for following our journey. Please continue to pray for all those who are in pain or struggle with an illness.
Love, Cathy
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My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Friday, September 16, 2005 9:23 PM CDT
***Photos have been updated of the 2 gardens***
EUTOPIA
There is a garden where lilies
And roses are side by side;
And all day between them in silence
The silken butterflies glide.
I may not enter the garden,
Though I know the road thereto;
And morn by morn to the gateway
I see the children go.
They bring back light on their faces;
But they cannot bring back to me
What the lilies say to the roses,
Or the songs of the butterflies be.
Francis Turner Palgrave
Thank you for following our journey. Please continue to pray for all those who suffer.
Love, Cathy
*******************************************
My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Friday, September 16, 2005 5:32 AM CDT
O.K. O.K… I know I promised garden pictures. It seems as though the pictures I do have were shot later in the day and David pointed out how dark they looked. So my plan is to go to school today and take pictures and post them tonight.
A special Thank you to Aunt Christine, Gloria and Aunt Jackie. I will be seeing to the FLS Middle School Youth Group this week to present them with a check for the garden upkeep. It was very thoughtful of you and I think it is an awesome way to celebrate Christine’s memory on her Birthday! Thank you from the bottom of our hearts.
Thank you for following our journey and praying.
Love, Cathy
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Sunday, September 11, 2005 9:08 PM CDT
We quietly celebrated Christine’s Birthday last Thursday. I made cupcakes instead a cake (at Katie’s request). She didn’t know how she wanted to celebrate ~ but knew it was going to be too difficult singing “Happy Birthday” and eating cake. So, I let her frost the cupcakes after school and we “toasted” our cupcakes to Christine. I think Katie felt a little better about all of this when we were done.
After dinner we went up to the school and visited the garden. I had gone to a nursery Thursday during the day and bought some plants for home and 3 extra ones (with purple in them) and we planted them in her garden at the Middle School. I have pictures and will post them soon. I rely on David to add photos to the Caringbridge site so I’ll remind him tomorrow. I started a garden area in our backyard as well and will post those photos when it’s completed.
A special Thank you to Aunt Christine and Gloria. I will be seeing to the FLS Middle School Youth Group this week to present them with a check for the garden upkeep. It was very thoughtful of you and I think it is an awesome way to celebrate Christine’s memory on her Birthday! Thank you from the bottom of our hearts.
Thank you for following our journey and praying. Please keep all the children and families who suffer (in so many ways) in your prayers.
Love, Cathy
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TEARS ARE THE PROOF OF LIFE
"How long will the pain last?" a broken hearted mourner asked me.
"All the rest of your life," I answered truthfully.
No matter how many years pass, we remember. The loss of a loved one is like a major operation; part of us is removed, and we have a scar for the rest of our lives.
This doesn't mean that the pain continues at the same intensity. There is a short while, at first, when we hardly believe it. It is rather like when we have cut our hand, we see the blood flowing, but the pain has not yet set in. So when we are bereaved, there is a short while before the pain hits us. But when it does, it is massive in its effect. Grief is shattering.
Then the wound is healed, so to speak. The stitches are taken out.... The scar is still there, and the scar tissue too. As the years go by, we manage, but the pain is still there, not far below the surface. We see a face that looks familiar, hear a voice that has echoes, see a photograph in someone's album, and it is as though the knife were in the wound again.
But not so painfully. And mixed with joy, too. Because remembering a happy time is not all sorrow; it brings back happiness with it.
"How long will the pain last?"
All the rest of your life.
But the thing to remember is that not only the pain will last, but the memories as well. Tears are the proof of life. The more love, the more tears. If this be true, than how could we ever ask that the pain cease altogether? For then the memory of love would go with it. The pain of grief is the price we pay for love.
Author Unknown
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Thursday, September 8, 2005 5:26 AM CDT
HAPPY BIRTHDAY MY PRECIOUS ANGEL
The Baptismal verse given to Christine:
I have called you by name, you are mine.
When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you…
You are precious in my sight, and honored, and I love you.
Isaiah 43:1-2,4
"In the end it's not the years in your life that count. It's the life in your years”.
Abraham Lincoln
A Very Special Gift
Written by S. Guevara
Once upon a time, three angels were busily working in the miracle factory.
They were responsible for wrapping up all the little miracles and sending them on their way.
Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly.
One day, however, down the conveyer belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's uhm...well...different."
"Yes, she is unique" said the second angel. "Well I think she is quite special," said the first angel "but I don't think she will quite fit our standard wrapping procedures." And the second angel added, "And we know she's special, but will everyone else?"
"Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send her off with our most heartfelt blessings. Then everyone will see how special she is." "What a wonderful idea!" replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.
When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel "for it is time for her to go."
"I will bless her with innocence and happiness," said the first angel.
"And I will bless her with strength to face the many challenges that lie ahead" said the second angel.
"And I will bless her with an inner beauty that will shine on all who look upon her" said the third angel. Before sending her off the third angel, who was very wise, gently tucked a note inside.
And it said:
Dear Parents,
Today you have received a very special gift.
It may not be what you were expecting,
And you may be disappointed, angry and hurt.
But please know that she comes with many blessings,
And, while there may be pain, she will bring you much joy
She will take you on a very difficult journey,
But you will meet many wonderful people.
She will teach you patience and understanding
And make you reach deep inside yourselves
to find a source of strength and faith you never knew you had.
She will enrich your lives,
And will touch the hearts of all who meet her.
She may be fragile,
But she has great inner strength.
So please handle her with care,
Give her lots of attention,
Shower her with hugs and kisses,
Love her with all your heart,
And she will blossom before your eyes.
Her spirit will shine like the brightest star for all to see,
And you will know that you are truly blessed.
Christine, you have blessed us with your love, courage and strength. We miss your smile, your touch and your sweet voice. Until we are reunited, we will grieve intensely because you are loved and missed so intensely.
Love, Mom
Wednesday, September 7, 2005 5:47 AM CDT
Today is the last day Christine would be 13. Tomorrow she would have turned 14 and I am contemplating how to honor her birthday. I do plan on making a cake and the decorations are up. We will most likely visit her Garden during the evening.
The calendar marks a birthday, yet in my heart I don’t know if she really ages. Will she always be 13? Will I always know her as my baby, who, through the years will remain 13 or age as we do on this earth?
This year we will be facing a lot of the “Firsts”. First holidays, first seasons, first everything without our Christine. It’s going to be rough, but as always we cling to each other and prayer to see us through.
Thank you for following our journey and praying.
Love, Cathy
Saturday, August 27, 2005 4:52 PM CDT
Christine’s Garden:
As I mentioned earlier in one of my entries ~ First Lutheran School dedicated a garden outside the Middle School in Christine’s memory. They held the dedication on August 17th and it was amazing to see all the students, staff and pastors together for this memorial dedication. A special Thank you also to the Mom’s and Dad’s who came out to be part of this celebration. It was a very touching event.
As we approach Christine’s 14th birthday on September 8th, I am at a loss of what to do.
I read in the school newsletter that the Middle School will be selling ice cream again this year to raise money to keep the gardens weeded, mulched, and new plants each season.... So, I thought to myself… what if instead of the card, the party, and the gift I would normally be buying that I took that money and donated it in Christine’s name for the Middle School to put towards the gardens?
If you would like to join me in this venture, I know Christine and our family would be honored. A couple family members have asked if they could still celebrate Christine’s birthday by buying a savings bond (for Katie) or some other way of remembering her day. So… if you ever bought a card or sent a gift and would like to take that money and join us in this manner, please do. Do not send us a card wishing us peace or prayers for our healing on her birthday (which is all wonderful and thoughtful) because that $2 or $3 would be better spent on the garden that reflects on her beautiful life. Just drop us a note and write on it “for Christine’s Garden” and we will make out a check to the FLS Student Council. If you are a member of the Church or School and know where to take it, please feel free to do so also. Thank you so much!
Please pray for all the families who are suffering the loss of a loved one. Each day we pray for the children who are in the hospital and the wonderful families we know through the Children’s Cancer Center. God’s Blessings!
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
Tuesday, August 23, 2005 4:29 PM CDT
On a Happy note, A Sad note, A Happy note…
Hello and thank you for checking in on us. At a time when I feel so lost and each day runs into the next~ daily tasks seem to have very little purpose, I need all the prayers and warm thoughts out there!
I’m hung up lately on the whole All Children’s Pastoral Care issue. It continues to rear it’s ugly head and make our life difficult. It just gets better and better I tell ‘ya! Again, after some time to sort through the details I will update. For now, I just need time to digest and decide where to go from here.
We received a lovely painting of Christine that was arranged by the Hedrick family. A neighbor of theirs is an artist and did a fantastic job capturing Christine on canvas. It was the picture I posted a while back on the web site ~ Chris was sitting on the back porch in front of the Iris’s and she had her make up on and was feeling so pretty that day. Thank you Lynn and family for this incredible gift.
A couple weeks ago my neighbor Bob passed away. His wife, Sylvia (of 62 years) is now learning how to live life without him. The night of his heart attack Sylvia called us asking for help. After seeing him and hearing him complain of pain, I called 911. We figured it was better to have him checked out at the hospital. I went with her to the hospital and shortly after arriving at the E.R. Bob had a heart attack. Sylvia was facing an all too similar situation watching a loved one slip away. I called her Pastor and their children who live out of state and we prayed! We talked to Bob though he was unresponsive, I believe they know you are there and can hear and feel your love. I asked him to find his daughter and look for Christine and give her all my love. Sylvia seems to be doing fine staying busy and I know in my heart how lonely she must be without him.
We had some visitors from Michigan fly in to celebrate Katie’s 10th birthday! Grandma and Aunt Jackie and baby Lily were here for 4 days and we had a great time. Always too short of a visit but I know if they stayed a month I would still think it was too short! We love having them here!
Today is our 19th wedding anniversary! Tonight Katie has Girl Scouts and it’s a school night/ work night so we will plan a special celebration with a dinner and movie this weekend.
Each day has new challenges and new hope.
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
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My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Monday, August 15, 2005 10:57 PM CDT
One Beautiful Painting, Two Funerals, Three Visitors Coming and 10 Birthday Candles:
Many things are happening right now to keep us busy!
Thank you for checking in on us and keeping our family in your prayers! I will update more later.
Love, Cathy
"My Lord has need of these flowerets gay,"
The Reaper said, and smiled;
"Dear tokens of the earth are they,
Where he was once a child."
"They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear."
And the mother gave, in tears and pain,
The flowers she most did love;
She knew she should find them all again
In the fields of light above.
Henry Wadsworth Longfellow –
First Lutheran has dedicated a garden area in Christine’s name. On Wednesday, the 17th they will have a Chapel service and afterwards we will all go over to the garden and place the plaque there dedicated in her memory. So many people were involved in making this happen. It is right outside the Middle School area and will be watched over and maintained by the middle school students. Of course~ we will want to plant something special there too. We can’t help but to be appreciative of First Lutheran. The staff and students have always been an amazing source of strength. We are fortunate to have found them 10 years ago.
This month is filled with Birthdays!
Happy Birthday (yesterday) to Katarina!
Max (our Golden) turned 3 today.
David has a birthday on the 11th
Katie’s is on the 18th.
Our 19th Wedding Anniversary on the 23rd.
Each day has new challenges and new hope.
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
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My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
- Happiness is a butterfly,
which when pursued, is always just beyond your grasp,
but which, if you will sit down quietly,
may alight upon you.
- Nathaniel Hawthorne
Friday, August 5, 2005 8:46 AM CDT
"My Lord has need of these flowerets gay,"
The Reaper said, and smiled;
"Dear tokens of the earth are they,
Where he was once a child."
"They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear."
And the mother gave, in tears and pain,
The flowers she most did love;
She knew she should find them all again
In the fields of light above.
Henry Wadsworth Longfellow –
First Lutheran has dedicated a garden area in Christine’s name. On Wednesday, the 17th they will have a Chapel service and afterwards we will all go over to the garden and place the plaque there dedicated in her memory. So many people were involved in making this happen. It is right outside the Middle School area and will be watched over and maintained by the middle school students. Of course~ we will want to plant something special there too. We can’t help but to be appreciative of First Lutheran. The staff and students have always been an amazing source of strength. We are fortunate to have found them 10 years ago.
This month is filled with Birthdays!
Happy Birthday (yesterday) to Katarina!
Max (our Golden) turned 3 today.
David has a birthday on the 11th
Katie’s is on the 18th.
Each day has new challenges and new hope.
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
*******************************************
My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
- Happiness is a butterfly,
which when pursued, is always just beyond your grasp,
but which, if you will sit down quietly,
may alight upon you.
- Nathaniel Hawthorne
Wednesday, August 3, 2005 10:01 PM CDT
Today was Katie’s first day in the 4th grade. It went very smooth for her. I, on the other hand had a difficult time. I think it was a combination of seeing the classroom that I picked Christine up from school when she had gotten ill (in November 2001 at the time of her diagnose). Luckily~ some things had been changed around in the classroom. I watched to see where Katie was seated and I was relieved when it was across the room from where Christine sat.
Katie turns 10 on the 18th of this month (as was Chris when she was diagnosed) and I shudder to think that lightening would strike twice. Someday I may share with you my thoughts on that one… It involves the Skyway Bridge and / or a padded room. I pray my faith would hold up under that kind of torture. Enough negative thoughts now...
After school I was pulled inside the office (Thank you, Mrs. Gibson for thinking of my privacy) and she told me that the Middle School has dedicated a garden in Christine’s name. Needless to say, I cried when I heard this. On Wednesday, the 17th they will have a Chapel service and afterwards we will all go over to the garden and place the plaque there dedicated in her memory. So many people were involved in making this happen. We can’t help but to be appreciative of First Lutheran. The staff and students have always been an amazing source of strength. We are fortunate to have found them 10 years ago.
This month is filled with Birthdays!
Happy Birthday (yesterday) to Katarina!
Max (our Golden) turned 3 today.
David has a birthday on the 11th
Katie’s is on the 18th.
Each day has new challenges and new hope.
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
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My Dear Christine,
I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Tuesday, July 26, 2005 2:57 PM CDT
Katie is stating to feel better ~ more energy, no fevers, no sore throat! They put her on a steroid to keep the inflammation down, so that has helped her tremendously. From what I have gathered it is a virus brewing 4-6 weeks before one displays any symptoms. It is less likely to be contagious than a cold or flu and can be spread by saliva. No sharing drinks or food with Kate for a while.
Today we went to get Back-to-School shoes. I, of course, think she has enough shoes, but something about a new backpack and new shoes to set the stage. When we returned home Katie wanted to play back to school with her animals. She gathered her supplies and her stuffed animals and is playing Teacher. She came into the room and made a comment to me about how she now knows how Christine felt about going back to school. How much Christine missed it and loved getting “new supplies”. On one hand I wanted to cry, but the other I looked at how much compassion Katie has towards things we take for granted.
Today I had to stop at Michaels Crafts for some more scrap booking supplies. They had a sale on paper and Katie wanted to pick out some for her scrapbook also-, which she did pick out 2 or 3. I explained I was working on Chris’ first and then would help work on hers. At the checkout the lady at the register made a comment to Katie on how the papers were very nice and asked her if they were for her book. Kate replied, “Yes”. Then the lady proceeded to ask if she had any sisters or brothers. Katie responded “No”. When we left the store I asked Katie if that made her sad or uncomfortable and she didn’t want to really talk about it. Perhaps it’s her way of saying “Yes!” without drawing attention. I read an article in Michigan that my Dad had cut out of a newspaper for me to read on how to address the question; how many children do you have? I want to answer honestly by saying “One”, yet I am a parent to “Two”. Being Christine’s mom has been one of the greatest events in my life. Mentioning that you have one child and a child who is an angel is another way to bring remembrance to her. Every situation is unique and there is no right or wrong answer. Oh, the things you learn in life!
Each day has new challenges and new hope.
Your messages and e-mails mean so much to me! Keep them coming!
Love, Cathy
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One can only imagine why it is possible we even exist.
Only God knows the plan.
My Dear Christine, I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Thursday, July 21, 2005 9:24 PM CDT
Friday update: Kate saw the doctor and it appears she has Mono. He is also treating her for streph (antibiotic).
It’s been a long week. I took Katie to the doctors last Friday for a skin rash. Along the way she must have picked up a germ. It’s almost as if I could set my clock to the kids getting sick 24-48 hours after being at the doctors office. Germs everywhere I guess. This has now lasted all week and I am taking her back in tomorrow to be re-tested for streph throat (we did on Tuesday and it came back negative). Now it appears more swollen (and puss around the area) and I cannot continue to fight her fever this long on Motrin. Perhaps the test strip was not accurate. Kate hates the Q-tip going into her throat and puts up quite a struggle, so I’m guessing the tip did not actually gather the “right” culture. I’ll know more later.
My Internet and e-mail has been down for two days. I’m so lost without being able to check in on our Caringbridge friends and I always look forward to any new messages left in Christine’s guestbook. Your messages and e-mails mean so much to me! Keep them coming!
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One can only imagine why it is possible we even exist.
Only God knows the plan.
My Dear Christine, I miss you so much. My heart and soul ache to have you near me. I miss your smile, your wit and your company. Above all, I miss the love you gave me.
Everything in my life reflects how you have shaped me. From the time you were born till the time God called you home, I have been inspired to be a better Christian and a better person for knowing you. I cannot imagine how long I must live without you, yet everlasting life with you is a promise I am given and I hang my every hope upon.
With God’s mercy we will be reunited with you. Till that day, my sweet Christine, I will forever live in memory and love for you.
Love, Mom
Thursday, July 14, 2005 10:39 PM CDT
Hello,
We returned from Michigan safely. We had a wonderful time visiting family and seeing everyone! We were busy to say the least. At one point we had 15 of us at Grandma and Grandpa’s house in St. Helen. It was “As close to communal living as it gets!” We loved every minute of it! We rode the ATV’s, went boating, we even went tubing in the lake by my sister’s house. The girls had a blast. Katie and her friend Alyssa were real troopers.
We spent one day at my parent’s cabin where we scattered Christine’s ashes. The family found such beautiful places to put her ashes- around the campfire, by the big sign entering the property and even the river where Christine waded in last time we were there. So many wonderful memories she left us with.
I chose not to go into Canada this trip. I think we will return in the wintertime and scatter her ashes in the snow around the Windsor area. Christine and Kate have never seen snow so we will have to make this happen.
It is so good to be back home. I missed David and the pets but the one thing that really stands out is how much I missed being by Christine’s things. I came home and had to visit her bedroom and cry. I needed the smell and the softness of her bed and being nearer to her.
Today we received a message from the Children’s Cancer Center telling us the girl’s artwork (submitted earlier this year) was selected for the 2006 calendar. Christine drew a picture of two bears and a bunch of hearts, so that will be the next February picture. Katie drew a summertime theme and it will be the June picture. Needless to say, I will be buying calendars for everyone on my Christmas list!
Please continue to pray for all those who suffer and give blood if you are able.
Love, Cathy
Sunday, June 26, 2005 11:03 PM CDT
To all our wonderful Caringbridge friends,
Yesterday we went over to Lakeland to Connie and Frank’s place.
We scattered some of Christine’s ashes near the horses she loved so dearly.
Katie did scatter some of her ashes around the filly “Chrissy”.
It was a wonderful day surrounded by friends and
celebrating a peaceful and beautiful place to keep a part of Christine.
I believe she was watching over us smiling as we rejoiced in a
place where she loved to be so much!
I have so much more to say on this but am going to update after I
get some things done in preparation for our trip to Michigan (we leave this Wednesday).
A special prayer request for our dear friend Bailee, she is doing so much better!
Keep praying for her healing and comfort for her family. God’s healing hands
upon you~ Robin, Mike, Bailee and Michael.
Love, Cathy
Monday, June 20, 2005 8:24 PM CDT
To all our wonderful Caringbridge friends,
Each day brings new uncharted territory for me. One minute all is fine, the next I feel overwhelmed with grief. Today Katie and I went to the store and had prints made of some photos. Up until now I have had a very difficult time looking at photos or wanting to go through the memories. In the long run perhaps it is therapeutic right now to go back and see all the good times too. We made some prints of the pictures we took when we were at the beach (the night of Christine’s admit into the hosp.) I plan on putting a collection together surrounding the photo from Pepito’s. Katie has asked to also have a photo taken of Mother / Daughter at Pepito’s Studio. I made the appointment for next month. It is interesting that Katie wants to be photographed like that also. It’s a good thing that she opens up a little more to me about her emotions. Having her photo is one way closer to being included in something that she wasn’t part of in the beginning and now wants to be. I am so grateful she is sharing more these days.
This weekend we plan on going over to Lakeland to see Connie and Frank. We plan on scatter some of Christine’s ashes near the horses she loved so dearly. Even Katie has asked that she be the one to scatter around the filly “Chrissy”. I was surprised that she was not scared or bothered by all of this, rather intrigued and jumped right in with the preparations for the day.
The next step is to scatter some of Christine’s ashes in Michigan at Grandpa and Grandma’s cabin (when we go later this month). She loved the woods and it only seems fitting to return to some of my roots in Michigan. There is a great story of her and a couple of her cousins getting lost in the woods. Chris was around 6 years old and was following her older “cool” cousins around and before you knew it they were “lost”. It even made the local newspaper. Not much happens in northern Michigan so they sent a reporter out to cover the story of “three lost girls” who weren’t really lost- just turned around! Ha! Lucky for us~ the local sheriff and his trusty dog found them after about an hour of scouting. We never let her forget that one! The article is framed and on the wall at Grandpa’s cabin.
While we are in Michigan we’ll also plan a day trip over the border into Canada. Christine mentioned many, many times how she wanted to go to Canada. It became a standing joke when I asked her what she wanted to do for the day- she would respond “go to Canada” so off to Canada we go.
Of course we also plan on some body of water, hopefully near some dolphins swimming. Oh, lest we forget the MALL!!! That is going to be an experience, let me tell ‘ya. I’m thinking some friends and family meeting up at the Mall of America! That would be a fine tribute to my dear baby. I am so sad that we couldn’t have been together with her, but all I have is a promise to take her there and that I shall do!!!
I think one of the neatest things about having this online site is that it has brought us closer to our family and friends and even folks we have never met but have formed a bond with. Just the other day I received a beautiful card from a woman who lives in Canada (how ironic) that has followed Christine’s site and has lit candles in her memory at the Relay for Life through the Canadian Cancer Society. How cool is that? Things like this melt my heart. Someone who I don’t even know has remembered my child. If I get started listing all the wonderful things people do, I will not be able to see my screen through the tears. Thank you to everyone for the wonderful support, meals, and abundant prayers!
A special prayer request for our dear friend Bailee. Better known as B-Bop in our neck of the woods. After being at Sloan Kettering for over 10 months she has had a setback. I pray for her healing and for comfort for her family. God’s strength and healing hand to you~ Robin, Mike, Bailee and Michael.
Love, Cathy
Sunday, June 19, 2005 12:27 AM CDT
Happy Fathers Day, David and Dad!
You have taught us so much and loved us so much, that by your example, we are better children for that.
David, you are the best father Christine and Katie could ever have.
Dad, by your teaching me about God and family values, I have become a much stronger woman.
You both have given us the strength and courage to face what comes our way; lessons that prepares and guides us through each day. We love you.
Happy Fathers Day to all the wonderful Dads in the world!
Love, Cathy
Thursday, June 16, 2005 0:17 AM CDT
Sit down. Get a cup of coffee first- this is a long story about the ACH Pastoral Care I told you about.
Late Friday evening, April 22, Christine was admitted to the hospital after a fall / head injury. During the surgery and throughout the weekend our Pastor had been there many times with us. What a great comfort he was to us, Thank You Pastor O’Brien!
All Children’s hospital introduced us to Catherine from the hospital’s Pastoral Care department. She also checked in on us many times over the weekend (she was aware that we had our own Pastor helping us).
Along with the severity of Christine’s condition- we were also worried about how it affected Katie. We openly talked about it with Catherine. We discussed the need to get Kate help with counseling, etc. She understood and was encouraging of this idea.
Late Monday, April 25th, we were told by a Social Service woman (who took us to the Pastoral Care office) to discuss Christine’s accident. Social Services and the ACH Senior Pastor, Huesto said that due to Christine’s age (minor), the fact that an accident took place in a residence and would most likely result in death, that we had to have a Police report number to match up with the Medical Examiner’s report. WHAT???
Oh Yeah, a police report for a fatality that hadn’t occurred. But they explained that this would be better now than later because of all the issues we would have to deal with should Christine not make it through. It was painted to look routine and in our best interest to do it “early”. (What they failed to tell us is that everyone who is an Administrator, Physician or anyone who should have been consulted – was not. Since it was late in the day, anyone who needed to know would find out the next day- after the fact).
David and I were under the impression that since it was in the home and the police were not called (only paramedics) that the State has this in place to protect our children. Made sense. My God the system works! Where and what do we need to do? We’ll do it. Now, with 20/20 hindsight I realize they were very sneaky with all of this.
A Largo Police investigator arrived at the hospital and explained that during his investigation that he would need to interview Katie. NO WAY. She has been through enough! I told the officer that it would be too traumatic for Katie. The officer, after hearing my concerns and taking down notes of all the details, informed me that my right as a parent of a minor- I have the right to deny them access to her. I immediately told him I wanted to exercise that right. No interviewing Katie! If I had any presence of mind I would have told him none of this was going to happen until we talked to an attorney. We had nothing to hide and we were in extreme crisis with Christine- nothing else mattered.
The investigator came to the house on Tuesday. By now he was aware of the 3 ½ years Christine battled cancer etc… and knew the circumstances and twice offered an apology to my folks that we had to go through this. As of today we have never seen or heard from the Largo Police dept. I am unsure of what became of that report but I think if they had any more questions we would have heard back from them.
On Tuesday, we were still in PICU. We discovered that the ACH Pastoral Care made the phone call on Monday without anyone’s knowledge or permission. He didn’t even know Christine’s medical condition and history for Pete’s sake! Throughout the day it became very clear that anyone and everyone who needed to be involved was circumvented and resulted in this terrible, unnecessary predicament for our family.
Dr. B. was visibly upset and he said he was taking this to the Ethics Committee within the hospital.
Wednesday 4/27 Christine was still in ICU with decline in condition. We were told that since the ME’s office was involved that it would be a huge tug-of-war getting them to let go of the report. Apparently, this is a long heated issue between the ME’S office and the hospital- we just happen to be caught in the middle.
On Wednesday morning I told our nurse that that no one was allowed to enter Christine’s room but our Pastor. She asked if this included the ACH Pastoral care and I replied ABSOLUTELY NOT! They were NOT welcome into her room. She placed a sign on the door that read something like… “Do Not Disturb, anyone entering the room must see the nurse first”. I loved Christine’s nurse. She is an angel walking among us!
There was one little form we needed to fill out with our signature allowing the hospital to move Christine’s remains to a Funeral home. The nurse said she tried repeatedly to get this form from Pastoral care and they would not give it to her. Routinely they have these forms for the nurse ahead of time. This was not the case here for some reason. Keep reading… At one point around noon the nurse did get the form and laid it down on the chair in Christine’s room. After checking on Christine’s machine’s etc. she turned around and the form was gone. Someone came into the room and removed it. None of us saw who it was.
Shortly after the form was missing, Catherine called us out of the room. She wanted us to follow her to sign the form. Gee… mystery of the form solved.
David and I followed her to the Pastoral Care office and were met by Huesto waiting for us. They shut the door and Huesto sat down with a clipboard and began to talk about the investigation. He said something to the effect of why the call was made to the Social Services and why he did what he did. He spoke for about 3-4 minutes and stopped. I told him we were called in here to sign a form and I did not even hear him apologize to us. I then said, “you’re just covering your ---, and I am P----- Off “. David and I stood up and walked out the door. After this meeting we never saw or spoke to Pastoral Care at the hospital again.
After Christine passed away we sat with her in her room. The Admin. Director of Patient and Family Support came into the room; he said he had three things to discuss with us:
1) He was very sorry for the loss of our daughter.
2) ME’s office has their teeth in this and most likely won’t let go.
3) The ACH ethics committee will address how and why this happened.
As of this date we have not heard one word on the outcome of this internal investigation. Why was this able to be done to a family without anyone consulted? What practice has changed because of this? What have they done to educate the Pastoral Care in dealing with Oncology patients and families? This I will have to follow up on to see that it doesn’t happen again to a single family in the future!
Whew… now then, I’ve gotten that off my chest. Thank you for allowing me to vent my anger! If I ever get any answers I will surely pass them on. Please know that the staff and everyone we have ever worked with at ACH are wonderful and we love them! Only Pastoral Care has truly let us down and placed us in an extremely hard situation at a time that no parent should ever have to experience… the loss of their child.
God's Blessings, Cathy
Monday, June 13, 2005 9:30 PM CDT
To all our wonderful Caringbridge friends,
There are still so many details to sort through. I balance my checkbook and see the purchases made with Christine at the bead stores. I received the ambulance bill for the night of Chris’ accident. I find mail that comes to the house addressed to her. This is really hard. Every fiber of our day was filled with her presence. I look at the clock on Mondays and say this was the time we were supposed to be at physical therapy. At what point does this fade away? I don’t know.
Looking through photos is another breaking point for me. I received a copy of the school yearbook and find that they have dedicated an entire page in Christine’s honor. It was beautiful. It was a collage of many years of photos taken with her friends and throughout her life. I’m not sure who put this all together but it is extremely heartwarming and wonderful. At the time they put it together they were doing it for her. Now it serves as a tribute to her and her lasting memories of the school and friends she loved dearly. Thank you First Lutheran!
I attended a meeting tonight to discuss ideas for the holiday craft bazaar at Church. It’s that time to start thinking of getting all the crafty people working on what they’d like to donate. I remember last year Christine and I made a few wreaths and some jewelry for this sale and I am so sad this year to even think of what to do. Without Chris working on these items with me, I don’t know if there is any pleasure to be found yet. I keep looking at all the beads (and hear them in the vacuum every so often) and think someday I’ll pick it back up and do it in her honor and memory. Just not ready yet.
Katie and I continue to keep busy. She is actually reading more than I have ever seen her do in a month’s time! When she is not home it is terribly quiet. The other night she spent the night at a friend’s house and David and I ate dinner alone. I thought to myself, “So this is what retirement is like- without children in the house”. Yikes! I do not like it one bit! I miss the noise, the activity, the drama kids add to our lives! David of course was thinking, “Ah, this is nice and quiet”. If only for one night.
Thank you to everyone who has checked in and said a prayer for us. We feel the strength in this time of weakness.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Thursday, June 9, 2005 10:13 PM CDT
Dear Christine,
I miss all the hours we spent in the evening beading and talking- I miss that so much. Now I spend it talking to you in this diary and in my prayers. I long so much to touch you and hear your sweet soft voice.
The day you were born and the doctor placed you on my chest my first thought was “she’s so small- so fragile” I was afraid to hold you closely as if you would break. That Sunday morning changed my life forever. I know your Dad feels the same way. Watching you grow up and discover the world was the greatest event of our lives. As we watched you grow, learn and play we were always amazed at what we saw. Katie came along when you were 4 and all of a sudden you had to share our time and attention. Through it all you were the greatest Big Sister Katie could ever ask for. She admires you and looks up to you more than you’ll ever know.
As time marched on, you turned 10 and you were diagnosed with a brain tumor. Immediately our lives changed. Your precious life changed. You were faced with one day being unable to walk and barely speak. Through time you recovered and discovered the power you had to heal, both emotionally and physically. Your appearance changed, yet you saw through that exterior and never gave up on what you believed and thought you could do.
Through the ups and downs of your many treatment plans you always believed you could get better. You are better, better than anyone could ever imagine. It’s beyond our comprehension what Heaven is like. I talk to you and I know you hear me. Not in the same manner as we’re used to, but again it’s beyond my wildest imagination.
The Lord must have known you were tired and He was pleased with what you had done in your short life. He took in His arms into Heaven and made you one of his special angels.
Parents are left behind to hurt and heal and are expected by God to accept this and understand. This is where it gets really hard. It hurts like Hell. Hopefully, with the grace of God, we will be with you again and we will understand.
In 100 years from now no one will remember you or me. Sad, but not really, since we will be together again and future generations will be left behind to figure it out as we rejoice together as a family.
I love you with all my heart and as we would say at bedtime each night: “I love you all the way to God and back”.
Love, Mom, Dad and Katie
Thank you to everyone who has checked in and said a prayer for us. We feel the strength in this time of weakness.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Monday, June 6, 2005 11:31 PM CDT
To all our wonderful Caringbridge friends,
The days are slowly melting together. With summer vacation here and no set schedule to follow, I’m constantly trying to remember what day it is. Perhaps this is a good thing right now. If I had to carry on as if nothing else changed it would be near impossible. This way, having Katie home, our schedule is more flexible so it is easy to slow down and take the little breaks I need. Of course she is full of energy and always bored. I enrolled her in the summer camp program at school (as we have always done) but this year she does not want to go. I think it is a combination of things actually. She is only 9 and has already blossomed into a young lady. Swimming at summer camp has her totally bugged out. I know she doesn’t want to draw attention to herself and the bathing suit doesn’t provide much cover. Hopefully in the next few days she’ll warm up to the idea of summer camp. Tomorrow I’ll to talk to her teacher about a tutoring schedule and while we are at school Katie will see how much fun she is missing out of by staying home. Keep your fingers crossed.
A few people have asked about my plans to return to work. I think until Katie goes back to school in August that I will spend the summer with her. Until then I am fortunate enough with David’s approval and support to take until the fall to return to ease back into the workforce. Don’t quite know what I want to do, but will think about that as we get closer- I have 2 months to cross that bridge. Anyone have any exciting, challenging, over-paid, flexible jobs they know of? (Right!)
I uncovered a little surprise in the freezer yesterday. As I was looking for something to make for dinner I found a box of Thin Mint Girl Scout cookies with a note taped to the box. It read “Not for Dad”. Of course it was Christine’s handwriting. She guarded her cookies very closely. Now I imagine somewhere along the lines there was a box of cookies for Dad and they must have been eaten. Her box remains in the freezer. This will have to be a celebration box we break open and eat with friends and laugh and cry at the same time rejoicing her love for Thin Mints.
I felt a little more closure last week when I went and got her remains from the crematory. We plan on scattering her ashes in several locations. All of her favorite places seem to be a natural fit. Of course horses and the mall are on the top of the list. Katie and I went to the store and purchased an engraved box with her name and dates on it and we plan on keeping some of her remains here with us. David was opposed to it at first but I think he didn’t want us to have an Urn that we lit candles around and made a large memorial in the house. Too overwhelming for all of us right now.
We did get a phone call on the night she passed away asking us to donate her cornea and eye tissue. My first thought was, “I am a donor and David is a donor, why not”? In the case that Christine had radiation and chemotherapy, I asked what other organizations would be calling us. They explained that due to her age and other criteria that she did not qualify for any other donations. I asked if it would benefit a person or was it going for research or cosmetic use. They explained it would first go for a child on the registry and then onto an adult if no child were a match. I believe Christine would have wanted this, the gift of sight for someone else. Her eyes were so big and brown and if only for a moment a person has the ability to really see what love she saw, I do believe a miracle has occurred.
Thank you to everyone who has checked in and said a prayer for us. We feel the strength in this time of weakness.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Wednesday, June 1, 2005 9:22 AM CDT
To all our wonderful Caringbridge friends,
It’s been a whirlwind lately.
David and I finally purchased a car. Yes, Old Betsy- the ’92 van, had to go. Not too far away mind you. We traded it in and that was my big mistake. I almost cried, well… yes, I did shed a tear when I handed the keys over to the salesman in the parking lot. We ended up going back to the dealership the next day and buying it back. Turns out my Mom can use it and I am so glad to see it still around. I have so many memories tied to that van. The trips, the meals, and the conversations we had in that van are so treasured. We kept it running as long as we could only because of the wheelchair. David and I talked about replacing it soon and now is as good a time as any. Thank you Merle for all your help! Katie loved spending time with you while we were there. The image of you and her goofing off in front of the window is priceless! You guys were so cute; I wish I had a camera with me. Either it would have qualified for a Hallmark commercial or a “Don’t drink and drive” public announcement- not quite sure which one would be best.
We ended up buying a gently used 2005 Camry. I love it. Even David enjoys driving it. That says a lot from a guy who is 6’2” and only likes “his truck”.
Katie has had a couple sleepovers this past few days. We love the noise in the house and the companionship for Katie. Summer vacation is here and time to relax and spend time doing fun summertime things. They have gone to a couple movies and the batting cage to hit some balls.
Late June I will be taking off to Michigan along with Katie and her friend. We will be visiting all my family for 2 weeks. We are looking forward to a change of scenery.
I think the hardest part for me right now is filling in the hours of the day. I feel lost. I miss Christine terribly. All the hours of the day I spent with her, taking her places and doing things as a family of four. We haven’t a routine yet- it’s too soon. The “missing her” part will be forever, but the daily routine will take time to adapt. I cry when I go into her room at bedtime and say “goodnight”. I cry because I think of how much love she gave. I no longer worry about her, for she is safe and healed, but I grieve for the huge void in my heart. I try to fill it with the promise He has made and yet the hours are so long waiting to be together again. So many other parents have dealt with this agony. Perhaps I can learn from them. Thursday there is another meeting at the Cancer Center that I hope to attend with Katie.
Thank you for checking in on us. Please keep all who battle in your prayers.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Monday, May 30, 2005 11:28 PM CDT
To all our wonderful Caringbridge friends,
I hope everyone had a wonderful Memorial Day holiday. It’s taken on a whole new perspective to me. I know we as a country honor our military personnel, but today I also honor Christine and all the young children who fought wars within their bodies. They are also the brave soldiers in so many ways.
I have used the analogy of a Nazi concentration camp on many occasions in regards to cancer treatment. The fear, suffering, humiliation and the unknown destiny are a reality every waking moment that they quietly face. Only to a degree or they would lose their sense of self and hope. In this war I have felt God as I never have before and I know Christine had a very close relationship to Him. She never lost hope, never gave up and never allowed herself to pity herself. She was a strong fighter and won battles everyday. Battles of medical procedures, physical abilities and battles of prejudice based on appearances. Society is hard for a girl with no hair and unable to walk without assistance. Yet through it all she made it seem perfectly “all right” to be who she was and never gave into what others thought she should do. She did what she knew she had to do and never let it keep her from enjoying her life. And that she did. We are fortunate to have surrounded ourselves with people who are a tremendous help and inspiration to us all. Thank you to all who have touched our lives and continue to pray and follow our journey.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Friday, May 27, 2005 12:47 AM CDT
Dear Christine,
Today marks one month since God called you home. We love you and miss you with all our hearts.
I have so many questions for you. Are you safe and in God’s loving hands as we pray for? Are you surrounded by all the things you love and have all that you need?
I go to the store and see the clothes and sandals you would love to wear and I think you are running around in Heaven wearing them. I go to the grocery store and I see your favorite foods and wonder if Heaven has all those things.
As I promised you, Max and Frannie are doing fine. They miss you too. I wonder… are there pets for you to love on while in Heaven? Do you still bead? How many angels have bracelets so far?
While I talk to you everyday- I miss your hand that I held as we walked. I miss your smile and your hugs. I ache to hold you tight and tell you how much I love you. I’ll always hear your “I love you too”, and I will always say, “I know, I feel so loved”. Until we are together again, I am holding these memories tight.
You are an incredible girl in every sense and we are so proud to be your Father and Mother and Sister. Be safe, be happy and be good.
Love and hugs, Mom
Wednesday, May 25, 2005 9:39 PM CDT
To all our wonderful Caringbridge friends,
Yesterday Katie and I went to the Cancer Center to meet Janet. We had some ice cream over at the Mall and talked a little about Katie and Janet’s interests. Janet explained to Katie that she is a “feelings therapist”, someone you can talk to about things that may be too difficult to talk to your Mom or Dad or friend about. They got along very well I think.
Tomorrow we are going back to the Cancer Center for lunch and an hour meeting. This is a new program they have set up with Dr. Messina and his associate, Janet. We will learn more about what the program hopes to accomplish. I know they specialize in grief and the loss of loved ones, so this will hopefully provide some insight to what has worked for folks in the past. There are many families I have met through the years at the Cancer Center that I will be reunited with. We share this bond of traveling through cancer and losing a child. It will be a tough day I’m sure. I promised Katie afterwards that I would take her back to the mall to shop around for some summer clothes. We’ll probably stay for dinner and let traffic ease up a bit before returning across the bridge.
We somehow manage to make it through the days. The loneliness is overwhelming at times. I miss Christine more than words can describe. My buddy and my loving child who always had a hug and a kiss ready anytime. It’s almost as if I trick myself into thinking she is sleeping in her bed or in the other room. Perhaps the pain is so intense I want to numb myself. Survival instinct, denial… whatever works.
Today we went and got our hair cut. Kate looked through a magazine and selected a shorter style and it looks adorable on her. Just before we left the house I ran a mop across the floor and she slipped and fell faster than I could yell “No!” Her tailbone is very sore right now but it gave us an opportunity to discuss accidents. I’m hoping as time goes on she realizes that healthy people can be injured but as sick as Christine was, well, that is what caused her accident. Cancer- not a bump on her head.
Do you have a favorite memory of Chris? Please share it with us so when we build her memory book I can add it.
Thank you to everyone who has already entered in the guestbook or sent me an e- mail of a story. Keep ‘em coming!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Sunday, May 22, 2005 3:06 PM CDT
To all our wonderful Caringbridge friends,
I received a booklet in the mail Friday from a guardian angel titled “A Time To Grieve” by Kenneth Haugk. It was filled with information on the grieving process that I found extremely helpful. It touched on many scenarios of loss and one article in particular that struck home. It was titled “Sudden verses Anticipated Death”. The fact that Christine battled cancer for 3 ½ years doesn’t make the process easier because ‘we had time to say goodbye’. We never gave up hope and we anticipated her recovery. Every day was focused on healing and regaining her abilities. This is the perhaps one of the hardest things to accept. She was supposed to get better. She was supposed to be here today.
After years of watching Christine battle, I became to know my child in a different way than most parents know their children. We all know the bumps in the road with school issues and social issues but to watch your child fight to walk again or stay motivated to go to the clinic to get chemotherapy, you have a different perspective of your child. Christine is a brave and strong girl who loved God and life.
She became my focus and my purpose. I was supposed to help her get better. The time we had was short but incredibly awesome. We did everything together. She was home during the day doing schoolwork, therapy and every night we would stay up late beading. It was if we could look at each other and by facial expression alone I could tell what she was thinking or how she felt. She was great company for me and I do miss our conversations. We would talk about everything under the sun during our late nights. Maybe this is why I journal these emotions, I want to talk to her.
Katie is very quiet. She hasn’t opened up her emotions to me yet. My tears make her uncomfortable and she avoids any discussions about grieving. She speaks fondly of the times she and Chris would share and it freely rolls into the conversations but stops at the “good” times. I suspect she has her own grieving clock. I would like to be there for her but she is acting strong and stoic at this time.
Do you have a favorite memory of Chris? Please share it with us so when we build her memory book I can add it.
Thank you to everyone who has already entered in the guestbook or sent me an e- mail of a story. Keep ‘em coming!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Saturday, May 21, 2005 11:16 PM CDT
To all our wonderful Caringbridge friends,
How do we fill the days? The empty spaces are in every breath.
I thank God that we had such a beautiful girl in our lives to take care of, love and be so loved in return.
Today we went to the Disney on Ice, “Nemo”. What a wonderful time. We were offered free tickets and I almost said “4 please”. After meeting with the grief councilors I reminded myself of their advice to not try to “fill” Christine’s space. We always went as a family of four and to try to fill the 4th spot with a buddy for Katie we would be trying to cover the missing piece and that is never possible. Our broken hearts grieve so deeply for our loss.
A favorite Christine memory:
All through Christine’s pre-school and elementary days, teachers and parents would tell Christine and I how much we looked alike. I always thought she looked like me. But it wasn’t until she got a little older that she admitted we did have the same eyes and facial features. One night long ago, I asked her how she got so beautiful and I was surprised at her quick, witty response when she said “Nana Sally”, David’s Mom. What a hoot. Nana Sally was a beautiful woman. I laughed and agreed it must be her genes that she had. Ever since that night when I would ask her how she got so beautiful she would always say Nana Sally and we’d laugh. Along with Nana Sally’s looks, she also got her grace and style and her love for shoes. Perhaps today they went shopping at Sak’s or Rodeo Drive together.
Do you have a favorite memory of Chris? Please share it with us so when we build her memory book I can add it.
Thank you to everyone who has already entered in the guestbook or sent me an e- mail of a story. Keep ‘em coming!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Friday, May 20, 2005 7:17 AM CDT
To all our wonderful Caringbridge friends,
How do we fill the days? The empty spaces are in every breath.
I thank God that we had such a beautiful girl in our lives to take care of, love and be so loved in return.
A favorite Christine memory:
Three years ago just before Mother’s Day, Christine and my Mom went shopping for a gift for me. Chris saw a beautiful plant inside of a wooden planter that resembled a birdhouse. My Mom talked her out of it saying it would fall apart after being watered too often. They then decided on something else. Later the next evening she talked her Dad into taking her back to the store where she saw the planter and he bought it. He was unaware at the time about the Grandma story. Today the original plant and the planter sit perched inside of the crook of an orange tree in my backyard. It still looks wonderful! I am constantly reminded of her determination. She wanted me to have that planter and would not let it go.
Tomorrow I will tell you about how she became so beautiful.
Do you have a favorite memory of Chris? Please share it with us so when we build her memory book I can add it. Though we met so many wonderful people and went so many places in the 3-½ years she had cancer, we also want to hear from you if you remember the early years also.
Thank you to everyone who has already entered in the guestbook or sent me an e- mail of a story. Keep ‘em coming!
Please remember to give blood if you are able. Also, check out how to become a bone marrow donor- it’s simple!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Thursday, May 19, 2005 5:51 AM CDT
To all our wonderful Caringbridge friends,
A favorite Christine memory:
Kissing her goodnight and having her skin feel like cotton candy melting on my lips.
Do you have a favorite memory of Chris? Please share it with us so when we build her memory book I can add it. Though we met so many wonderful people and went so many places in the 3-½ years she had cancer, we also want to hear from you if you remember the early years also. Thank you!!!
Tuesday I met with the councilors at the Children’s Cancer Center. I am really looking forward to our next visit on Tuesday when Katie and I go to the CCC to meet Janet and then go over to the mall for ice cream. I think this is a great way to introduce Katie to her and meet her on familiar ground. We have chosen the title “grief therapist” for Janet since Katie may not like the idea we are seeing a councilor. She is familiar with the word “therapist” since she went to P.T. with Christine on many occasions and liked it. Tomorrow is the last day of school so the meetings will be over the summer as to not conflict with school.
During Tuesday’s meeting I was given a lot of useful advice. It confirmed some ideas I already had and gave me a lot to think about when planning daily activities and holidays etc… They are very tuned into what Katie’s needs are going to be, such as showing her emotions and allowing me to cry and be sad instead of trying to “cheer Mom up”. The key is not trying to replace Christine, but rather leave the chair at the dinner table empty- don’t change where we eat because it is too painful to see the vacant seat. Remembering and celebrating Christine’s birthday for example, also to leave her bedroom in tact for at least a year or so. Certain things can be moved of course, but don’t try to remove clothes and switch Katie into her room because it is bigger. All of these things are O.K. to leave so that our bodies have time to adjust. Apparently the studies conducted show that the physical body needs that clock of one year to cycle through the emotions and help aid in managing grief.
Aunt Christine returned to Michigan yesterday. Needless to say, it was a very tearful goodbye. Not only do I love my sister but also I think it was very helpful in calling out her name throughout the day. As bizarre as it sounds I miss calling out Chris’ name and this helped me in some ways to not just “stop” saying her name.
Katie and I will be planning a trip to Michigan in July with a buddy of hers. We need to have a change of scenery and help build new happy memories also.
Please remember to give blood if you are able. Also, check out how to become a bone marrow donor- it’s simple!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Monday, May 16, 2005 7:38 AM CDT
To all our wonderful Caringbridge friends,
By the grace of God we continue to make it through each day. Such a flood of emotion at any given time. One minute I am at peace, the next I am struggling to make any sense of it. I have seen denial, anger, guilt; all the things I’ve heard about from the grieving process are true to form. Not in any particular order, without warning they flare and usually they stay a short time, sometimes they linger through the days. A friend once told me after the passing of her daughter that it took a while before the pain of her last days were replaced by the beautiful memories of her lifetime. This I can understand now. The suddenness of Christine going into ICU, the unbelievable chain of events is too painful to allow to remain. Perhaps it’s God’s survival instincts he gave mankind. Childbirth comes to mind. You block or chose not to remember the labor pains, because time heals your body and erases the pain to allow the miracle of birth to shine through. Of course, there is no guarantee that this life will be 3 hours or 13 years, you don’t get to know. In death, my child is born into heaven with Christ and I believe this is where the miracle of life completes itself. We say bedtime prayers at night and I ask God to please hold her tight and let her know how much she is loved and missed. Without this ability to talk to God and Christine I am sure to go insane. She is always with us.
We continue to stay busy. Things around the house we put off for lack of time or concern. We are looking to replace the van. Yes, after 10 years it’s time to retire ‘ole Betsy. Thank you Merle for your help!
Tomorrow I will meet with a councilor from the Children’s Cancer Center. A new program they just started to help family members and siblings with the loss of a child. I am hoping things go well so we can introduce Katie to her. It will be at the Children’s center so she will feel a little more comfortable there. I’ll keep you posted.
Please remember to give blood if you are able. Also, check out how to become a bone marrow donor- it’s easy!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Friday, May 13, 2005 3:54 PM CDT
To all our wonderful Caringbridge friends,
We are very grateful for all the warm wishes and prayers being said for our family. I think we are blessed in so many ways. Not a minute goes by that I don’t think about Christine and miss her terribly. I also know she is in God’s embrace and is watching over us.
Aunt Chris leaves next Wednesday and we have her daughter coming in tonight to spend the weekend with us. Hopefully we can do some fun things to keep our minds and bodies busy!
I’ll update after the weekend.
HAPPY BIRTHDAY ERIN!!!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Monday, May 9, 2005 11:26 AM CDT
To all our wonderful Caringbridge friends,
Thank you to everyone who has left warm and loving messages. I plan on printing out certain diaries and guestbook entries to place in Christine’s scrapbook.
After I dropped Katie off at school today and was driving home I realized again how empty the house was without Chris waiting at home for me. She would always be asleep, but I knew she was there and that we had a busy day planned. Her absence is unimaginable sadness to me. I miss my little fighter, but I know she is with me every minute.
I would not have traded one day, for Christine has taught me so much. She was the pillar of courage and dignity. She never gave up. Chris fought with every ounce of her being to get better. Physical challenges were so difficult but she never said, “I quit, I can’t do better”. She wanted to run and do cartwheels again and she was determined to get there. She’s probably is in heaven teaching youngsters how to do back flips today. A special thanks to Gloria who helped her envision that goal and always encouraged her to try. She was pushed and tested and was made aware of things she could do to meet that goal.
The clinic appointments, the MRI’s, physical therapy and the Children’s Cancer Center:
Cancer had become a way of life. Getting well had consumed our lives. Now all that is over. The hope now lies in finding a cure.
So many people gave us hope and encouragement. I can only hope to return that blessing.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Friday, May 6, 2005 11:57 AM CDT
When I was pregnant with Christine I heard the song “Love Can Build A Bridge” for the first time. I was driving and I had a tear in my eye listening to the words. A moment in time I’ll never forget. It was nighttime and I was traveling on Belleair road. Throughout the years I have held such beautiful memories of this song watching my children grow.
Christine’s all-time favorite was the theme song to the Titanic. She would play the Celine Dion soundtrack with the song “My Heart Will Go On” over and over again. I thought it was a phase but it returned faithfully through time. This was her favorite CD she always grabbed to listen to in the car or clinic. I think now she was leaving me this song as a gift and a message that we must go on. We will be together soon on God’s time, not ours.
5. Love Can Build A Bridge
Words and Music by Naomi Judd, John Jarvis and Paul Overstreet
I'd gladly walk across the desert
With no shoes upon my feet
To share with you the last bite
Of bread I had to eat
I would swim out to save you
In your sea of broken dreams
When all your hopes are sinkin'
Let me show you what love means
(Chorus)
Love can build a bridge
Between your heart and mine
Love can build a bridge
Don't you think it's time?
Don't you think it's time?
I would whisper love so loudly
Every heart could understand
That love and only love
Can join the tribes of man
I would give my heart's desire
So that you might see
The first step is to realize
That it all begins with you and me
(Repeat Chorus)
When we stand together
It's our finest hour
We can do anything, anything
Keep believin' in the power
(Repeat Chorus)
Love and only love
Love and only love
God’s Blessings, Cathy
Wednesday, May 4, 2005 10:47 PM CDT
To all our wonderful Caringbridge friends,
It’s so hard to believe today marks one week since Christine passed away. As I laid in bed with her last Wednesday, I prayed and spoke to her all my wishes and dreams for her. I wished we could see her graduate and grow old. All the dreams every parent wants for their child. All I wanted was more time. All I wanted was for her to be safe and happy. I guess God heard my prayers and called her away from what was to become. Her fragile human body had enough and he rescued her.
As I read the guestbook and e-mails from friends it warms my heart to hear the stories on how Christine touched so many lives in such a short lifetime. I am so proud and honored to be her Mother. She is an amazing child.
The thought I remind myself hourly is how we had the best bedtime conversations. Sometimes very difficult questions were asked and many times they were just silly stories and plans for the next day. Christine was always the planner. She liked to look forward to something fun each day. No matter what was planned such as chemo or P.T. she always wanted something fun to think about. She focused on that and it helped get through the tough times. Every night it ended with the same ritual, “I love you and I’ll be back to check on you”. Then Christine would respond with “I love you too”. And I would say, “I know, I feel so very loved”. So now each night I say to her in heaven “I feel your love baby” and I want to cry myself to sleep. Nights are so hard.
Today Aunt Liz, Aunt Jackie and baby Lily left. They were the 3rd set of family in town. Aunt Chris is still in town for about another week. We will plan some fun things to do together to get me out of the house. I can see me easily crawling back into bed most days but that won’t do any good. Katie returned to school today and is slowly getting into a routine. I think with all the family in town and the attention she has been getting helped her along. As things quiet down it will become painfully obvious how things are changed at home. No one to play with after school. No one to argue with, as all sisters are famous for. She certainly left a huge hole in our lives and our hearts.
Thank you to everyone for the wonderful love and support! The prayers are what make any of this bearable. We will miss her beyond words.
I would like to keep this journal going for a brief time to sort through the issues we are facing. I have always checked in on the families we know (or came to know) through Caringbridge and I will continue to do that. This site has provided us encouragement and hope, and I hope to gain strength with the people who have traveled this path or just a friendly “Hello” from time to time from you.
Please continue to pray for all those who battle or are suffering. We did not lose Christine- because she is found. She is in Heaven waiting for us to be found.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Monday, May 2, 2005 10:41 PM CDT
To all our wonderful Caringbridge friends,
Thank you to everyone for the wonderful love and support! The prayers are what make any of this bearable. Yesterday was a true testimony of the love and faith Christine has. We will miss her beyond words.
I would like to keep this journal going for a brief time to sort through the issues we are facing. I have always checked in on the families we know (or came to know) through Caringbridge and I will continue to do that. This site has provided us encouragement and hope, and I hope to gain strength with the people who have traveled this path or just a friendly “Hello” from time to time from you.
Please continue to pray for all those who battle or are suffering. We did not lose Christine- because she is found. She is in Heaven waiting for us to be found.
So many folks have asked me or have wondered without wanting to cause us any more pain: “What happened?” No one was prepared. After watching her fight so long & hard and then to have this happen was totally unexpected.
On Friday 4/22 we spent the day looking at beads and going to the beach for a sunset and ice cream. Upon coming home the girls went into the bedroom to get on their pajamas. During this time, Christine lost her balance, which has always been an issue with brain tumor children. When she hit her head it broke an artery in her brain, which bled a great deal because of low platelets and created pressure on her brain. We called 911 and they flew her to Bayfront. Upon arrival they were setting up the O.R. at All Children’s Hospital and did an emergency surgery. They explained to us the swelling stopped the oxygen form getting to her brain. On Wednesday she passed away at ACH.
Along this course of five days we were treated wonderful by the staff at ACH. Our nurse, Sheryln, was an angel. But we had an absolutely horrible experience from the Pastoral Care. This in itself is a story that I will sometime share with you. You will be floored to hear what happened. I guess it provided me an outlet for my anger. I had to ask God for forgiveness for my behavior towards them once it became clear how they violated policy and the ethics committee within the hospital had to intervene. Unbelievable is all I can say.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Friday, April 29, 2005 6:36 PM CDT
The Angels surely cheered in joy, as they opened up the gates,
Welcome to eternal life, come feast upon our plates.
Come inside and walk around, or maybe you should kneel,
For now you're here, and here alone, no pain you'll ever feel.
Yes, my Child, I came for you, much sooner than they planned,
But, I will give them comfort, and help them understand.
My plan for you will carry on, for look at what you've done,
You touched so many with your life, from the battle you have won.
So welcome home my child, come run these fields of green,
And WE will always Love You, Forever Our Christine
- Lynn Hedrick -
To all our wonderful Caringbridge friends,
A Memorial Service will be held for Christine on Sunday, May 1, 2005
2:00p.m.at First Lutheran Church.
1644 Nursery Road, Clearwater Fl 33756
A reflection celebration will follow at Grace Lutheran Church, Highland Ave in Clearwater. Since our Church is under construction, Grace Lutheran has provided us the location to hold a gathering. We will have food, balloon and butterfly release in honor of Christine.
In lieu of flowers, donations can be made to:
Children’s Cancer Center
4901 West Cypress Street
Tampa, Fl. 33607
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Thursday, April 28, 2005 11:34 PM CDT
I received this beautiful poem today from Lynn and want to share with you:
Cathy,
As you know me, when I hurt, my thoughts come out on paper, so here is my tribute to your most incredible fighter:
The Angels surely cheered in joy, as they opened up the gates,
Welcome to eternal life, come feast upon our plates.
Come inside and walk around, or maybe you should kneel,
For now you're here, and here alone, no pain you'll ever feel.
Yes, my Child, I came for you, much sooner than they planned,
But, I will give them comfort, and help them understand.
My plan for you will carry on, for look at what you've done,
You touched so many with your life, from the battle you have won.
So welcome home my child, come run these fields of green,
And WE will always Love You, Forever Our Christine
- Lynn Hedrick -
I pray for comfort and you knowing she is in the Lord's care.
To all our wonderful Caringbridge friends,
A Memorial Service will be held for Christine on Sunday, May 1, 2005
2:00p.m.at First Lutheran Church.
1644 Nursery Road, Clearwater Fl 33756
A reception will follow. I will update information later.
In lieu of flowers, donations can be made to:
Children’s Cancer Center
4901 West Cypress Street
Tampa, Fl. 33607
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Thursday, April 28, 2005 11:53 AM CDT
To all our wonderful Caringbridge friends,
A Memorial Service will be held for Christine on Sunday, May 1, 2005
2:00p.m.at First Lutheran Church.
1644 Nursery Road, Clearwater Fl 33756
A reception will follow. I will update information later.
In lieu of flowers, donations can be made to:
Children’s Cancer Center
4901 West Cypress Street
Tampa, Fl. 33607
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Wednesday, April 27, 2005 9:55 PM CDT
To all our wonderful Caringbridge friends,
It is with overwhelming sorrow I tell you that Christine passed into the gates of heaven today.
The Lord has secured us with the foundation to trust in Him to take absolute care of her.
I wish to let you know that we had a peaceful and spiritual time with Christine today. It was filled with comfort and love. I prayed with her that we would have a lifetime of laughter and love to share but now we must carry that through with her spirit.
We cannot begin to process the loss.
We are planning a memorial service on Sunday afternoon at First Lutheran in Clearwater with a reception following. We will let you know the time and place as we work through the details.
I will update later as I have time.
Please continue to keep Christine and all who battle in your prayers.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
God’s Blessings, Cathy
Sunday, April 24, 2005 11:36 PM CDT
Sunday Evening. ICU Day 2.
I’ll try to piece together the events of the day:
Christine remains in an unresponsive state. She is not medically sedated, so this is just her brain trying to reconnect to her body. Amazing machine!
We are still in the wait and see stage.
The blood pressure and fever are still a concern. She is given Dopamine for the BP, and a broad-spectrum antibiotic for infection. All the cultures so far have come back negative. The ICU doctor feels this may be due to the “thermostat” inside the brain. Currently it is running around 103*. They placed a blanket around her that blows cool air and it is so difficult for me not to want to rip it off of her! She is always so cold and I see her shaking and want to do something about it. I know this is necessary and I cannot remove it- but as a mom who always tries to keep her warm this just makes me sad. Her shaking is not due to being cold but rather her neurological condition. God, I pray she does not remember this. I’ll be in such hot water!
David and I feel so helpless. Of all the things we cannot control, I feel general comfort measures are my responsibility and yet the cold blanket is just another thing outside of our control. The staff has been wonderful in giving me “jobs” during the day. Yes, I am “Head Snot Sucker”. Occasionally there is drainage from the nose and I must not let it ooze down her face. O.K. maybe it is an unpleasant job but the benefits are wonderful. They give us a Yankour suction tip and everything! Another job was to watch the peripheral line in her foot while they gave GCSF. Yes, for one hour I checked on the area to make sure there were no swelling/ problems. Just the little things they give us to stay involved are what makes this staff absolutely wonderful.
They hope to remove the EEG tomorrow because that has not shown any seizure activity. With all leads removed from her head- it will be nice to move around her a little easier. Hopefully the ventilator will be removed also. She is able to breath on her own. They see fluid in her right lung and feel the antibiotics she is on will clear that up. This could be due to aspirating during the intubation in flight to the hospital. They will redo the CAT scan tomorrow of the brain and the lungs. If the lung is improved they plan on removing.
Today they removed the “brain drain” as we call it. It was placed under her scalp (outside of the skull) to relieve any blood/pressure. They were able to do this at bedside. Two staples later and they were done. They made it appear as if they removed a splinter from your finger. Christine flinched and was not so happy about it and boy she let us know about it! She is able to respond to stimulus. It is the goal to get her to reach to the area or the object that is causing the irritation. Right now it is general discomfort and not recognized which particular part of the body it is in or how to stop it.
We have somewhat of a system here at home on working shifts. I am there from 9 am till 7 pm and David takes the nights. All parents are unable to be in the ICU from 7-9 am and 7-9 pm during shift change over. After this time we are free to enter and leave as often as we need to. She is receiving one-on-one nursing care. The ICU bed area is as large as maybe 10’ x 10’ and only accommodates one chair. No bedside sleeping is allowed. If we want to nap we have to go to the Family Waiting room but currently we are ‘occupying’ a small meeting room because of the weekend. Tomorrow that could change. In case it is still open I will take some room freshener. Old food containers were left in the trashcan and boy was it bad.
With Christine being unable to communicate this is acceptable. There will come a time when she demands Mom to be there constantly. I am taking the much-needed time with Katie at night. She is tucked in and not looking forward to school. Mondays are always hard, but this day is important to reaffirm the “normalcy” in our very overturned lives. She is very disturbed that she was in the room arguing and doing the typical sister struggle when the fall occurred. We continue to stress to her it is not her fault. We are going to keep an eye on her and perhaps get some sort of help if necessary. She has a lot of questions and I am glad that she wants to discuss them. With Grandma and Grandpa here she has been treated like royalty. They went to the mall today and got a few things. I see her glued to Grandma’s side! She and Christine adore them!
I am waiting for David’s 3rd call of the night to report in on Chris. The last two were unchanged. I sent him back to the nurse with a question on pain management. He’ll call me back later. I pray for her healing and comfort through the night. Tomorrow I plan on taking her some cards we received and her Walkman. She will be able to listen through the headset. I have talked about the pets, the weather, and the events of the day and prayed a million prayers with her. I told her I could not sing to her because they would ban me from the room. I welcome any advice from folks who have been in or know of this situation. What are some creative ways to stimulate and give her the audio experience? One mom suggested that she read the Caringbridge guestbook to her child. I read them and cry. So maybe this isn’t a good one for us just yet. I treasure them and get great comfort from them. Thank you so much!
My visitors today were a much-needed break. These are some gals from the Children’s Cancer Center who didn’t read the part of no visitors. Actually, I know they read them and chose to ignore them and came anyway! God knows these women are amazing cancer mom’s! Thanks Jane for the Starbuck’s coffee and Danish. I only mentioned the no visitors Saturday because there is a limit on who can go into the room and until Christine is stable and moved to the floor unit, we really have no privacy. It worked out wonderful though. Thank you ladies, I love you too!
Please continue to keep Christine and all who battle in your prayers.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook. Christine loves to get mail and I will read them to her when I am stronger.
God’s Blessings, Cathy
Saturday, April 23, 2005 10:34 AM CDT
Saturday night update:
Christine remains in critical condition in the ICU. David is with her for the next few hours so I could be with Katie. Thank God Grandma and Grandpa are in town staying with us. Small blessings everywhere!
They did the surgery last night to remove the blood vessel / swelling that was from the hematoma.
The biggest challenge she is facing right now are: low blood pressure, being on a ventilator, left pupil is dialated and unresponsive and infection. They think the pupils are due to the pressure of the swelling on her optic nerves. She responds to touch but is unable at this time to communicate with us. The nurses and staff are wonderful to her and our family. She is clearly in the best hands right now. Please continue to pray that she is able to recover quickly. We are not given a prognoses, just a lot of "time will tell". They are concerned that given the previous trauma to the brain with radiation and chemos that she is a high risk.
I will update after we meet with the neuro team tomorrow.
Thank you for the wonderful support! With our friends and church praying, we certainly are stronger for it!
Love, Cathy
Please keep Christine in your prayers. She was flown to Bayfront Medical Center last night as a result of a fall/ hematoma. She was taken into surgery and is currently in ICU at ACH. Please refrain from visiting/ calling as she is in ICU. I will post more info as it is avail.
Tuesday, April 19, 2005 10:48 PM CDT
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today 4/1905:
WBC = 1.8
HGB = 11.3
PLT = 30
ANC = 500
Today’s clinic appointment for chemo (course #5 dose #2 of Irenotecan) was canceled because of low platelets. Next Wednesday she should bounce back for dose 2.
We spoke to Dr. Grana and she said the tumor board would discuss Christine’s scan results during next Tuesday’s meeting. She looked at Christine’s “bump” she had on the back of head. This morning while getting back into bed she took a spill and bumped her head on the wooden bench next to the bed. A very small amount of bleeding occurred. Nothing major. Since she is sleeping in Katie’s room she is not used to the layout of the room and plopped down. I am reminded of the elementary school joke about Helen Keller. You probably know the one about “How does Helen Keller’s mom punish her?” She rearranges the furniture. Boo… anyway we are having a grand time with Grandma and Grandpa here. They are sleeping in Christine’s room – thus the change in bedrooms.
We will keep you posted of the events as we get out and travel around with Grandma and Grandpa!
Mark your calendars for April 29th.
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=100216&lis=0&kntae100216=3D73037698C84553A78A0756A38A1591
Emily Lester formed a group to walk in the Relay for Life at Osceola High School.
Her goal is $10,000. for the American Cancer Society.
Wow! A cancer survivor herself at age 15~ Emily is quite an amazing girl!
Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing. I’ll have my camera and will be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
God’s Blessings, Cathy
Medical Note:
Christine received course #5 dose #1 of Irenotecan 04/13/05.
Celebrex, Thalomid & Protocel. Septra was stopped so that she can begin the Pentamidine injection on 4/13.
Last MRI was on 4/6. The last three scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Wednesday, April 13, 2005 8:55 PM CDT
Today’s clinic appointment was for chemo course #5 dose #1 of Irenotecan. Chris also received 2 small units of blood and the new antibiotic: Pentamidine by I.V. She began to feel ill after the first 20 minutes and so it was stopped so they could give her Benedryl. Afterwards she felt fine but very tired. We ended up at the clinic for approx. 6 ½ hours.
I spoke to Dr. Aung today at the clinic regarding Christine’s MRI results. The ACH radiologist read the scans and gave his summary (as well as the original summary from West Coast). Appears to be the same in showing improvement with no new areas of concern. I asked what our roadmap would look like if the scans continue to show improvement. We are currently on a trail study and have no indication as to how long, etc. She will bring Christine’s case up at the next Tumor Board meeting next Tuesday or the following Tuesday 4/26. Hopefully, this will provide some direction beyond the month-to-month (or should I say: MRI to MRI) that we have been operating under.
We are anxiously waiting for next Monday! Grandma and Grandpa will be here from Michigan for a week visit. Look out Malls and shoe stores- here they come! As always, we love their visits and a week never seems long enough!
Thank you very much for the responses to the song request! There are several versions and I will treasure all of them! My kids will laugh at me when I sing the Burl Ives version since it mentions Birmingham jail. Oh well, now I know why Grandma left that part out!Thank you Lynn, Jess and Eleanor!
There will be a Spaghetti Dinner Benefit for Bailee Dunnigan held by the Elks Club.
When: Saturday, April 16th, at 6:00 P.M.
Where: The Elks Club # 1719
237 S. Pinellas Ave, Tarpon Springs, Fl.
Tickets are 5.00 and include dinner, salad and garlic bread. There will be a raffle and other activities.
You can purchase the tickets at the Lodge.
Bailee and her Mom have been in New York’s Sloane Kettering Memorial Hospital now 3 times longer than they originally planned. Please pray they get home soon and that Bailee stays in remission! Amen!
Also mark your calendars for April 29th.
Relay For Life
Emily Lester formed a group to walk in the Relay for Life at Osceola High School.
Her goal is $10,000. for the American Cancer Society.
Wow! A cancer survivor herself at age 15~ Emily is quite an amazing girl!
Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing. I’ll have my camera and will be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
God’s Blessings, Cathy
Medical Note:
Christine received course #5 dose #1 of Irenotecan 04/13/05.
Celebrex, Thalomid & Protocel. Septra was stopped so that she can begin the Pentamidine injection on 4/13.
Last MRI was on 4/6. The last three scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Tuesday, April 12, 2005 10:06 PM CDT
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today 4/12/05:
WBC = 1.8
HGB = 8.0
PLT = 77
ANC = 700
Today’s clinic appointment was originally for chemo (course #5 dose #1) but it was postponed until tomorrow. Christine’s hemoglobin is at transfusing level so we will do blood, chemo and her Pentamidine all at the same time. Tomorrow we are planning on camping there all day! We’ll take lots of crafts and Christine can finish her Achievement Test. She’s bummed that we have to give up the bead store trip but I promised her we would go on Friday. Promises are hard to come by. I usually like to use the word “plan” instead. Too many times our plans had to change and it left the girls disappointed in me instead of understanding that the circumstances changed, not me.
Frannie and Max continue to entertain us all. They get along wonderful. We let Frannie run around loose in the garage each day for exercise and she will soon reach the comfort stage of chasing Max around! What a hoot watching them together.
One of my all time favorite songs is Down in Valley (?). At bedtime when my girls were very young I would sing this to them. Now, you need to understand that I heard it as a child from my mom who in turn learned it from her mom. Needless to say, through the years most of the words were altered/ omitted/ forgotten. If anyone out there knows this song and can help me find the title and artist, I would greatly appreciate it.
“Down in the valley, valley so low,
hang your head over and hear the wind blow,
Hear the wind blow dear, hear the wind blow.
… Roses love sunshine, violets love dew, and Angles in heaven know I love you.
O.K…I know my memory is bad- but nothing compared to my singing voice.
There will be a Spaghetti Dinner Benefit for Bailee Dunnigan held by the Elks Club.
When: Saturday, April 16th, at 6:00 P.M.
Where: The Elks Club # 1719
237 S. Pinellas Ave, Tarpon Springs, Fl.
Tickets are 5.00 and include dinner, salad and garlic bread. There will be a raffle and other activities.
You can purchase the tickets at the Lodge.
Bailee and her Mom have been in New York’s Sloane Kettering Memorial Hospital now 3 times longer than they originally planned. Please pray they get home soon and that Bailee stays in remission! Amen!
Also mark your calendars for April 29th.
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=100216&lis=0&kntae100216=3D73037698C84553A78A0756A38A1591
Emily Lester formed a group to walk in the Relay for Life at Osceola High School.
Her goal is $10,000. for the American Cancer Society.
Wow! A cancer survivor herself at age 15~ Emily is quite an amazing girl!
Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing. I’ll have my camera and will be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid & Protocel. Septra was stopped so that she can begin the Pentamidine injection on 4/13.
Last MRI was on 4/6. The last three scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Friday, April 8, 2005 9:53 PM CDT
I received 2 phone calls today regarding Christine’s scan results. The first one was from the clinic. Nurse Jen (Christine’s favorite port-accessing buddy) called to read the summary report that was faxed over from West Coast radiology. I do not have a copy of the report in my hands- so you’re going to get the Readers Digest condensed version: It appears to be STABLE and in certain areas IMPROVED!!!
Of course the doctors at the clinic want to compare the films with the previous scans themselves. Which is very good to know- the more eyes on it, the better.
The second call was from Diego. He pretty much read the same summary to me. The language they use in describing their findings is very interesting. “Right temporoparietal and left parietal region”. Anyway, the bottom line is it looks “Better!” Praise God!
Something is finally working. I pray now that Christine’s body continues to accept the chemo and that it does not compromise her blood counts too low.
There will be a Spaghetti Dinner Benefit for Bailee Dunnigan held by the Elks Club.
When: Saturday, April 16th, at 6:00 P.M.
Where: The Elks Club # 1719
237 S. Pinellas Ave, Tarpon Springs, Fl.
Tickets are 5.00 and include dinner, salad and garlic bread. There will be a raffle and other activities.
You can purchase the tickets at the Lodge.
Bailee and her Mom have been in New York’s Sloane Kettering Memorial Hospital now 3 times longer than they originally planned. Please pray they get home soon and that Bailee stays in remission! Amen!
Also mark your calendars for April 29th.
Relay For Life
Emily Lester formed a group to walk in the Relay For Life at Osceola High School.
Her goal is $10,000. for the American Cancer Society.
Wow! A cancer survivor herself at age 15~ Emily is quite an amazing girl!
Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing. I’ll have my camera and will be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid & Protocel. Septra was stopped so that she can begin the Pentamidine injection on 4/12.
Last MRI was on 4/6. The last three scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Wednesday, April 6, 2005 6:34 PM CDT
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today 4/06/05:
WBC = 1.5 (-.1)
HGB = 8.2 (-1.3)
PLT = 36 ( 12)
ANC = 600 ( 200)
Last night Christine and a few gals we know from the Cancer Center participated in a fashion show at Saks 5th Ave. The Pediatric Cancer Foundation put on this event as a fundraiser. Christine and David came back with wonderful stories to tell about the night’s events. All the girls looked wonderful and were glowing inside and out! I stayed home with Katie since she has been up most of the night with intestinal problems. David described the night to me and he said he had tears in his eyes when Christine was walking down the runway and the crowd stood and clapped. I know I would have lost it!
I wish I could have told Steve Yerrid (the man who is walking her down the runway) that this was the same girl he visited over two years ago. During the Steve Yerrid Fishing Derby in 2002, she was confined to the wheelchair after the laminectomy and had several months of high dose steroids (she weighed much more and had a lot of facial hair, moon face, etc…) I don’t think he recognized her at all last night. I will look through all my photos to see if I can find the one with him talking to Christine while she was on the fishing pier. It would be really neat to put the pictures in chronological order of all the events she participates in.
A few weeks ago we were invited to the mother/daughter makeover at Saks and then to a photo shoot (about a week later) at Pepito’s Studio. The photo above is a picture we took of his photo. He gave a framed gift to all the mother/daughters who participated! Incredible! An awesome keepsake for sure!
Today is was back to reality and we went to the clinic to have Chris’ port accessed. Her hemoglobin is low (at 8.0 they transfuse). We will watch her the next couple of days and if she doesn’t ‘perk’ back up we’ll go in and have her checked again. We went to the MRI and this time I remembered the de-accessing heparin and the films on a CD. Diego is so good to us! He called me on the way home and said the radiologist looked at it quickly and seems to think there is improvement. He needs more time to compare today’s films with the last ones, so Diego will call me tomorrow once it is final and dictated.
I suspected it would be stable. At least looking at Christine and watching her work on the Achievement Test from school, she’s mentally and physically doing better. Some days she is really on the ball and others she drags herself around. The medicines I’m sure are taking a toll on her. Hopefully this is all worth it and she can continue to improve to a point when she no longer needs chemo to ward off cancer!
A true miracle in the making!
Today while driving to the MRI we went over railroad tracks. As a tradition I announce the tracks coming up and tell everyone to raise their feet and make a wish as we cross. Both girls were in the car and know this routine very well. After we went over the tracks, I asked Katie what she wished for. She hesitated because she is under the impression that if she tells anyone then her wish would not come true. I reminded her that when she is with loved ones that “rule” doesn’t apply. So Katie tells me she wished that the MRI went fast. Christine wished for clear scans and I wished for the scans to be better. Here we are in the car, chitchatting away and instantly we all stopped and for one brief moment we all thought of the same destination and purpose. Kids are so smart.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Mark your calendars for April 29th. A dear friend from the Children’s Cancer Center, Emily Lester, formed a group to walk in the Light the Night at Osceola High School. Her goal is $10,000. for the American Cancer Society. Wow! A cancer survivor herself at age 14~ Emily is quite an amazing girl! Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing I’m sure. I’ll have my camera and be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid, Protocel and Septra.
Next MRI is scheduled 4/6. The last two scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Saturday, April 2, 2005 11:28 PM CST
I wanted to get the pictures posted of the Sak's Fashion show. I will update after the MRI on Wednesday.
“Peace is not the absence of suffering, but the presence of Jesus in our hearts”
Mark your calendars for April 29th. A dear friend from the Children’s Cancer Center, Emily Lester, formed a group to walk in the Light the Night at Osceola High School. Her goal is $10,000. for the American Cancer Society. Wow! A cancer survivor herself at age 14~ Emily is quite an amazing girl! Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing I’m sure. I’ll have my camera and be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid, Protocel and Septra.
Next MRI is scheduled 4/6. The last two scans showed improvement. Please pray the tumors continue to respond to this cocktail of drugs.
Thursday, March 31, 2005 7:28 AM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work yesterday 3/30/05:
WBC = 1.6 (-.3)
HGB = 9.5 (same)
PLT = 36 (-14)
ANC = 400 (-200)
HAPPY BIRTHDAY to two very special ladies in our lives! Connie and Alexa share a birthday today. We love you gals and hope you have a fantastic birthday!
Clinic went very smooth yesterday. Christine’s counts are down but not low enough for any blood or platelets. Her energy level bounces around. One day she is on top of everything and the next she is draggin’ her wagon.
Today we hope to get back to P.T. The last two sessions had to be canceled because of the lack of an authorization number from the insurance company. We miss you Gloria! Christine was up very early this morning with “bathroom issues” so hopefully it will pass soon and we can get back on schedule with therapy today.
A very nice card arrived yesterday from a group called Friends of Allie. FOA has been following Christine’s site and sent her two gift cards and even included Katie with a Michael’s gift card. How sweet! Thank you very much for the joy you brought to both of the girls. They can’t wait to go shopping and use their cards. I hope to meet this group of people soon! Hopefully we will run into each other at the Light the Night event on April 29th.
Mark your calendars for April 29th. A dear friend from the Children’s Cancer Center, Emily Lester, formed a group to walk in the Light the Night at Osceola High School. Her goal is $10,000. for the American Cancer Society. Wow! A cancer survivor herself at age 14~ Emily is quite an amazing girl! Christine and I plan on being there selling some jewelry to raise money to help her team a little. Christine will walk (with the help of her wheelchair) in the opening lap around the field when they have their annual “Survivors Lap” at approx. 6 pm. Tears of pride will be flowing I’m sure. I’ll have my camera and be sure to update. Come out and join us if you can. Folks don’t have to stay and/or walk. Just hang out with some amazing people!
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid, Protocel and Septra.
Tuesday, March 29, 2005 5:41 AM CST
Hope everyone had a Blessed Easter holiday!
The girls had fun hunting for eggs and baskets. Christine and Katie left a note for the Easter Bunny with a request to hide the eggs inside for Christine and outside for Katie. This way it would be fair in finding them. (Katie is much faster on her feet). I can’t wait to show them the notes when they grow up and have children of their own. Each year they write to Santa and the Easter Bunny. Katie even was lucky enough to ask for his autograph and he signed the back of it! How nice of Mr. E.B. to do this.
Chris received chemo last week and has been doing fairly well. It’s affecting her energy level. After chemo she seems to have a hard time sleeping at night. Insomnia is my guess. I’ll ask the doctor tomorrow when we go for routine blood-work. Her next MRI is scheduled for Wednesday, April 6th at West Coast Radiology.
I’ll update after clinic tomorrow. Thanks for checking in on us!
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid, Protocel and Septra.
Wednesday, March 23, 2005 8:29 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today 3/23/05:
WBC = 1.9
HGB = 9.5
PLT = 50
ANC = 600
Christine received dose 4 of Irenotecan today. Now a two-week break followed with an MRI. I will call and schedule that tomorrow. We will continue to use West Coast Radiology unless something were to change. (Insurance denial, etc.) This time I will try to remember the de-accessing heparin and to get a copy of the scan on CD before we leave!
Today we received the second survey for the video game Chris is participating in. She does not care for the game “Re-Mission” but plays it. Hey, money talks:)
We saw Dr. Grana and she read the radiologist report again to me. We already had the results last week, still it was still nice to see a doctor and have her examine Christine. She said Chris looked good and was pleased with her exam. I asked her about the schedule to take Chris off of Septra (antibiotic) and begin her on the pentamadine (sp). This is another type of antibiotic kids get infused (or by inhaler) once a month. We talked about it earlier as a way to possibly stop the platelets from dropping after chemo. I expressed my concern about it jinxing the way the treatment has been improving Christine’s condition. Dr. Grana said this would have no impact on the drugs/ outcome she is currently getting. Now we will wait until next week to take her off and then the schedule will fit in when Chris is there getting either chemo or blood. No special trips needed.
Chris took some of her jewelry to the clinic today at the request of the gals last week. It was nice for Chris to talk about jewelry and it passed the time quickly.
Tomorrow is P.T. and afterwards we’ll meet some friends for an early dinner and a movie. Katie wants to stay home from Spring Camp tomorrow so we’ll go see Ice Princess, just us gals! Poor Dad, he has to eat leftovers again. I remind him somebody has to work.
The new bunny keeps us hopping! I tell ya, it’s a good thing she is so sweet, all she does is eat and poop. The girls adore her and have her so spoiled. If anyone walks by her she jumps all around her crate like ”look at me, hold me, feed me, do anything and I’m happy”. Frannie has become an acrobat! Even Max is more comfortable around her and has eased up on wanting to get too close to her. He figures she is here to stay so just relax and enjoy. We are trying to give him as much attention and not get excited when he approaches her. He’s such an awesome dog!
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #4 of Irenotecan 03/23/05.
Celebrex, Thalomid, Protocel and Septra.
Tuesday, March 22, 2005 9:33 AM CST
We have been enjoying our Spring Break!
Saturday we went over to Lakeland to visit Frank, Connie and Randie. Christine and Kate now are the proud owners of a bunny rabbit! It was a gift from Frank and Connie. The girls absolutely love her! She is the cutest and sweetest bunny. Her name is Frannie (Frank and Connie blended together). She is black and white and looks like a “Frannie”. At the Children’s Cancer Center last Thursday night we were trying to come up with some names and Erin suggested Frannie, what a great fit!
Tonight we will update the new pictures. Max, our golden, loves her too! Of course he is wanting to sniff her and be the center of attention. For now the bunny is small and fits in the girls hands, and he does not:)
Tomorrow is clinic day for dose 4.
Thursday we hope to see a movie with friends after P.T.
We will most likely plan a low-key weekend celebrating Easter. Christine will probably qualify for chemo on Wed. and will need some “down” time.
I’ll update after clinic.
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #3 of Irenotecan 03/9/05.
Celebrex, Thalomid, Protocel and Septra.
Friday, March 18, 2005 0:01 AM CST
Today was a “big blood” day. We left home around 10:00 and returned at 4:00.
Christine took the usual crafts: painting & beads to help pass the time. I, on the other hand had a stack of bills to review and some Thank you cards I needed to do and I ended up doing absolutely nothing! It has been so rainy here and I really just wanted to curl up and sleep. Oh well…
Now that she has her fresh blood we can enjoy the week ahead. Next Wednesday is her 4th dose and then she’ll get a 2-week break, afterwards an MRI.
Today we received the radiologist report from All Children’s Hosp. Basically they stated the same as what the radiologist reported from West Coast. This was reassuring.
I found it interesting how they use the phrases such as:
1) Good evidence of metastatic disease or abnormal enhancement is not seen in the cervical, thoracic or lumbosacral spine studies.
2) Decrease in abnormal enhancement in the right cerebellum, right temporoparietal region, and left parietal region when compared to 11/17/04. Whew… my spell check is confused.
Dr. Barbosa stopped by us in the hallway and commented that Christine looked good and her scans looked good. He said, “The Celebrex is working, huh?” He was always a firm believer in not removing Christine from this drug when everyone else (Duke) was taking it out of the protocol due to the risk it posed for some patients. Is it the Celebrex or the cocktail of drugs? Not sure, perhaps it is the Protocel but I left that one alone. Doctors don’t like to hear about the faith that is put into a natural nutrient supplement. Whatever it is – it’s working and I will gladly give him credit. Actually all the credit goes to God, because Christine is the miracle child at this point.
Looking back at the dates and conversations we had after the laminectomy and the doctor at Duke saying it is incurable, I believe today is a miracle. I will never take for granted any day that we are able to spend together.
Tomorrow I will stop by the pediatrician’s office to pick up some allergy info. for Katie.
Humana HMO has some allergist specialists on the plan and we can make an appointment to have her checked/ tested.
Be safe, be happy and be good.
Please keep all those who battle in your prayers.
Congratulations Bailee on getting out tomorrow! The plan is to move back into the RMH tomorrow and boy are they excited to get out of the hospital room.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #3 of Irenotecan 03/9/05.
Celebrex, Thalomid, Protocel and Septra.
Wednesday, March 16, 2005 6:32 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today 3/16/05:
WBC = 1.3
HGB = 6.9
PLT = 29
ANC = 400
Today’s clinic appt. was for chemo #4, but Christine’s blood did not qualify. In fact, her red count is down so low that we will return tomorrow for a transfusion (again). This will boost her for next week to get the chemo. This weekend is filled with fun going over to see Connie and Frank, so Chris will be feeling peppy for that. (Yea!)
We were given the choice to go across the street to the hosp. for blood or to return to the clinic tomorrow. Geez… Like I told the nurse, as much as we have planned tomorrow like PT, English tutoring and the Cancer Center tomorrow night, I would rather come back than sit through all the inefficiencies at the hosp. Boy, have I become too familiar with all this?
David update: Pathology came back from Emory and all is well. The lump they removed is not cancerous. The tissue mass should not grow back. Hallelujah!
Katie update: She stayed home from school today because she was having such a difficult time sleeping last night. Her sinuses are bothering her and her breathing is labored. I looked up on the weather site and saw that pollen (oak) is very high right now. We have three of the biggest oak trees next door and boy, are they messy! After reading more about allergies, I see every one of the symptoms listed is what Katie is experiencing. Twice we have taken her to the pediatricians only to be told it is not strep throat and we left their office with no answers. I will call them tomorrow to find out exactly what we can do to help eliminate the problems she is having. Any advice out there? Please e-mail me.
Today at clinic we asked about the scan results form Christine’s MRI on Feb. 3rd. Apparently, the radiologist has the scans, but now, after 2 weeks we learn he does not have the prior scans to compare them to. Oh boy… We saw Dr. Grana and expressed our concerns. I wanted her to know that I felt it was important that the Hem/ Oc department that was treating Christine had the scan results in a timely manner. Decisions are made on this data and why is it so difficult to get a response? I realize it was done at another facility, so perhaps they are a little “put-out”. Tomorrow I will call West Coast Radiology and request a copy of the first scan to be sent over. After this incident I will have a copy on CD in my pocket when we leave the MRI dept. This way I know the ACH radiologist has it.
Aunt Jackie and family will be visiting Orlando the week after next. We hope to drive over and visit them for a while. Spring break is next week and when they return they have Achievement testing. This will be hard getting over when Katie is in school, so hopefully we can drive over on the weekend. Exciting times!
Be safe, be happy and be good.
Please keep Bailee all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #3 of Irenotecan 03/9/05.
Celebrex, Thalomid, Protocel and Septra.
Friday, March 11, 2005 7:07 AM CST
Christine received dose #3 of Irenotecan on Wed. Her counts were borderline but she did qualify. Next week she is scheduled #4 and then a 2 week break with MRI.
We received the results/summary from West Coast Radiology from the last MRI Feb. 3rd, but still are waiting for the scans to be reviewed by the All Children's team. When we asked several weeks ago for some additional information they stated they wanted to view to the scans themselves to be able to compare. We then requested the films to be forwarded to ACH but have yet to hear from the radiologist.
(sigh).
Dr. Barbosa was in the clinic Wednesday but we did not see him. I was hoping after being there for several hours he would have popped his head in to say "Hi" to Chris but he was unable.
My computer crashed the other day so it will be a while before I rebuild e-mail addresses and web sites that I had automatically programed in. I updated this site last night and somehow through the course of the night it was dropped.
Still waiting on results from David's biopsy. Monday, 2/28 was his surgery to remove the lump on his neck and it had to be sent out to a seperate lab (ins. co. decision). So, hopefully today we get some confirmed results.
Please continue to pray for all those who battle.
Give blood if you are able.
Be safe, be happy, be good.
God's Blessings, Cathy
Tuesday, March 8, 2005 4:26 PM CST
Today was Christine’s last Communion lesson with Pastor O’Brien. She is ‘officially’ blessed to partake of Communion. She’s worked very hard to accomplish this and we are so proud of her! We will have to come up with a way to celebrate after the next Church service. I’m thinking of tying it in with Easter Sunday.
Confirmation is set for a later date. Her class will prepare for that next year in the 8th grade. The plan is to keep her going with the class schedule. (It was not necessary for her to be confirmed to have the sacrament of Communion).
Wednesday is clinic day. I’ll update after with the results. Be safe, be happy and be good.
Please keep Bailee all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Tuesday, March 8, 2005 4:26 PM CST
Today was Christine’s last Communion lesson with Pastor O’Brien. She is ‘officially’ blessed to partake of Communion. She’s worked very hard to accomplish this and we are so proud of her! We will have to come up with a way to celebrate after the next Church service. I’m thinking of tying it in with Easter Sunday.
Confirmation is set for a later date. Her class will prepare for that next year in the 8th grade. The plan is to keep her going with the class schedule. (It was not necessary for her to be confirmed to have the sacrament of Communion).
Wednesday is clinic day. I’ll update after with the results. Be safe, be happy and be good.
Please keep Bailee all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Monday, March 7, 2005 4:10 PM CST
MARCH 12 IS MY MOM'S BIRTHDAY! I AM GIVING HER A BIRTHDAY SURPRISE!!!
Monday, March 7, 2005 0:01 AM CST
It’s been a great week given all the crazy circumstances. With David’s surgery on Monday and Chris not getting chemo we did manage to get a lot done!
We had to work around a very flexible schedule and consequently had to cancel some appointments. We promise this week to get back to our routine and have P.T., English tutoring and Christine’s last Communion lesson with Pastor O’Brien.
This past week was filled with new experiences:
We went to Pepito’s Photography Wednesday evening to have our photo taken, courtesy of the Pediatric Cancer Foundation.
The PCF also invited Chris (and Mom) to ’Make-over Madness’ at Saks 5th Ave today. There is a new photo posted tonight of Christine and her rosy cheeks and lips!
Saturday night Christine went to the Teen Group at the Cancer Center. The night’s theme was Casino Night. She had a blast and did very well at the Blackjack table. She had practiced with Dad and Katie during the week. At the end of the night they had a Blind Auction and she won a DVD player and gift card to blockbuster. How cool! Another young man bid on and won a $100.00 gift certificate to International Mall. Chris was very envious. As you know, Christine loves the mall. While others were beginning to trade their gifts around, Christine entertained the idea of asking him to trade. Christine figured she already had a DVD player and was eager to trade for the gift card.
Katie and I returned from the mall in time to pick her up and witness this wonderful game/ blind auction. I whispered in her ear that Katie was very excited that she won a player because now she could get her old one. Well… sibling rivalry at it’s best… she replies, “No, I mean, what did she ever do for me?” I said, “You’re right, trade for the gift card. I know you really want that one and it is your prize to do what you want with”. I wanted her to feel good about any decision she made. As I went back to my seat at the table, I noticed Christine was closing the deal with the young man who won the card. Much to my surprise as he left Chris’ side the DVD player was still in her hands. Wow, this kid is too much. What a doll.
Of course the DVD player is still unopened and I suspect Katie is going to have to do some serious begging. Gotta’ love sisters. I know I do mine.
Through all of the events that keep us busy, planning, & looking forward to and experiencing new things, I can’t help to think of the reason why we are there. I would gladly change all of that to have Chris back at school and our “old, hum drum” cancer-free lives back. Not knowing what the future brings- I will grab every opportunity we have to let Christine enjoy herself.
Katie at bedtime tonight wanted to play a game. She wanted me to ask her questions… O.K. first question:
Q. What is your favorite color?
A. Green.
Q. What do you want to be when you grow up?
A. Singer or veterinarian.
Q. What’s your favorite number?
A. 3.
Q. What is your favorite age? (I’m thinking she’ll say 13 or 16). Well, she said she was 6 when Chris got cancer and so she wants to be 5 again.
I get so choked up thinking about this. I know the age of innocence. I always assumed kids grew up and during that sheltered time they worried about school and boys and who-was-who’s best friend when they were in the 3rd grade. Kate has much deeper thoughts.
Wednesday is clinic day. I’ll update after with the results. Be safe, be happy and be good.
Please keep Bailee all those who battle in your prayers.
Thank you for following our journey and being part of our lives. It has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (canceled as of today due to weight gain: 108lbs.)
Thursday, March 3, 2005 5:10 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 – 10.5
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500-6600
Christine’s blood work today:
WBC = 1.9
HGB = 8.7
PLT = 45
ANC = 600
Today Christine did not receive her chemo; her blood counts were too low. The next appointment is Wed. I’m sure by then she will rebound.
She continues to feel well and is sassy as ever!
Katie and I are still fighting the sinus infection/ cold. Three weeks now. Enough is enough!
David went back to work today. His neck is a little sore but otherwise he feels good.
Oh-Oh, Chris just read what I posted about being sassy. She looked at me funny and said “hmm… I could kick that up a notch ‘ya know”. It’s great to see her resume more of her normal traits. Gotta’ love a teenager!
She is working on getting a couple of bunnies. Apparently Grandma has agreed to keep the bunnies for her and Kate only if they come over on the weekends to love on them and take care of them. She would care for them during the week.
Connie knows someone with rabbits and is checking out if they have any for sale.
So now all Christine can think of are bunnies. Last night she was still up at 1AM because she was so excited. We have one dog, one cat and two fish. I am happy with that responsibility. Rabbits were never part of the family plan, but due to the circumstances I can be flexible. Someone stop me!!!!
I read on the web today:
WASHINGTON - A New Jersey company is recalling about 2.8 million metal charms sold at Michaels Stores and other arts and crafts retailers because they contain high levels of lead, the government said Thursday.
Studies have found that even small amounts of lead ingested by children can cause neurological damage or behavior and learning problems.
Since Christine and I have used charms from Michaels to make her bracelets, I want folks to know about this. We use metal beads and charms and they could pose a potential problem for young children who place the jewelry in their mouths. We also use sterling charms; so if you have a bracelet with a charm on it and are unsure, please let me know.
Please keep Bailee in your prayers. She has been at Sloan Kettering for 6 months now following her bone marrow transplant. They are fighting off the EBV virus that has appeared in the brain region. She is from the Tampa area and misses being home with her family and friends. Bailee and her mom are holding up very well and are optimistic they will beat this and get out soon. Prayers are always welcome. Pray for a speedy treatment plan that allows her to get out and return to the Ronald McDonald house and eventually home! We miss her sweet freckles around here.
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (canceled as of today due to weight gain: 108lbs.)
Wednesday, March 2, 2005 10:53 AM CST
Sorry about the delay in updating. Lots going on. I'll update after Christine's clinic appt. tomorrow.
David's surgery on Monday went well. He had a lump removed from his neck that is believed to be benign. We'll have the pathologist report on Monday. Otherwise he is feeling good and is back to work tomorrow.
Chris and Kate are doing well.
Please pray for all those who battle.
XXO, Cathy
Wednesday, February 23, 2005 6:08 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 2.3 ( .3) from last week)
HGB = 10.7 ( 2.7 transfusion Fri)
PLT = 74 ( 22)
ANC = 900 ( 300)
Today Christine received her chemo in the clinic. A week behind schedule, but that is her norm due to blood counts getting too low.
I spoke to the doctor about removing Septra from her drug line-up. Several times in the past I have heard parents mention Septra lowered their child’s platelets. Yesterday we ran into one of the mom’s at the bead store (thanks Alicia!) and she mentioned it again. She suggested using a drug called Pentamidine instead. So today I asked about it, and yes, it is an option.
Septra is a drug Chris takes orally once a day for 6 days (Friday night is her break night). This drug is prescribed for patients who have a port to ward off infection/ pneumonia. Typically it lowers their white cells, according to the doctor, but she agreed to try Pentamidine to see if it makes a difference in Chris. This drug is infused once a month in the clinic. Since we are there weekly for chemo or blood products, we might as well give it a try. Please pray this helps reduce the amount of times she is delayed in getting treatment. Treatment is working so far and every advantage we can give her, the better.
Today Christine received the video game/ player I was telling you about. After the initial survey is completed, she will be able to set up the game and begin playing. At the end of 6 weeks or so, she is eligible for $150.00 from the company. She is so excited to say the least!!
A few of my favorite memories from this past couple of weeks:
Xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
Valentine’s to remember…
A Valentine’s Day card from my loving husband that was sooo romantic. It said everything a spouse could say after 18 years, 2 kids, & cancer could possible capture in a message. Too bad after I read the card (with a tear in my eye) that I looked at David and said, “Honey, this is so sweet, but it’s not my Birthday”. He looked at me like I was crazy. As he read the card his mouth dropped open in disbelief. Priceless, I tell ‘ya! Now he says to me, “I am building memories”. Even the kids laughed at this!
Katie has “Unavailable Hair”…
At night, when I tuck Katie into bed, I usually scratch her back as we say prayers. Sometimes this includes playing with her hair. Well, one night she had her hair in braided pigtails and while I was scratching her back, she said to me “ Mom, rub my feet since my hair is unavailable”. Of course I cracked up and then rubbed her feet. This child is 9 years old, as tall as I am, and has size 8 shoes. She has got to be feeling the growing pains everywhere!
Christine is not a Girl Scout…
Today we delivered G.S. cookies to the clinic. We walked through the clinic parking lot with Chris’ wheelchair loaded down with cases of cookies in the seat- as she walked behind it using it for balance. Now, to anyone watching us they might have thought I was a candidate for the “Mother of the Year” or should I say, “Monster of the Year” because here is this bald, unsteady child pushing a wheelchair full of cookies through the hospital parking lot. Oh well, they will have to live with that thought.
Anyway, as we slowly made our way through the parking lot, she turns to me and says, “I’m not even a Girl Scout and I’ve sold more cookies than Katie”. I reminded her that she sold them to the people she knows: at the physical therapy center, bead store and to the clinic nurses. She responds with “I’m way too far into this cancer thing!”. Amen!
Well, that about sums up our life this week.
Please keep Bailee in your prayers. She has been at Sloan Kettering for 6 months now following her bone marrow transplant. They are fighting off the EBV virus that has appeared in the brain region. She is from the Tampa area and misses being home with her family and friends. Bailee and her mom are holding up very well and are optimistic they will beat this and get out soon. Prayers are always welcome. Pray for a speedy treatment plan that allows her to get out and return to the Ronald McDonald house and eventually home! We miss her sweet freckles around here.
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (canceled as of today due to weight gain: 108lbs.)
Wednesday, February 23, 2005 6:08 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 2.3 ( .3) from last week)
HGB = 10.7 ( 2.7 transfusion Fri)
PLT = 74 ( 22)
ANC = 900 ( 300)
Today Christine received her chemo in the clinic. A week behind schedule, but that is her norm due to blood counts getting too low.
I spoke to the doctor about removing Septra from her drug line-up. Several times in the past I have heard parents mention Septra lowered their child’s platelets. Yesterday we ran into one of the mom’s at the bead store (thanks Alicia!) and she mentioned it again. She suggested using a drug called Pentamidine instead. So today I asked about it, and yes, it is an option.
Septra is a drug Chris takes orally once a day for 6 days (Friday night is her break night). This drug is prescribed for patients who have a port to ward off infection/ pneumonia. Typically it lowers their white cells, according to the doctor, but she agreed to try Pentamidine to see if it makes a difference in Chris. This drug is infused once a month in the clinic. Since we are there weekly for chemo or blood products, we might as well give it a try. Please pray this helps reduce the amount of times she is delayed in getting treatment. Treatment is working so far and every advantage we can give her, the better.
Today Christine received the video game/ player I was telling you about. After the initial survey is completed, she will be able to set up the game and begin playing. At the end of 6 weeks or so, she is eligible for $150.00 from the company. She is so excited to say the least!!
A few of my favorite memories from this past couple of weeks:
Xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
Valentine’s to remember…
A Valentine’s Day card from my loving husband that was sooo romantic. It said everything a spouse could say after 18 years, 2 kids, & cancer could possible capture in a message. Too bad after I read the card (with a tear in my eye) that I looked at David and said, “Honey, this is so sweet, but it’s not my Birthday”. He looked at me like I was crazy. As he read the card his mouth dropped open in disbelief. Priceless, I tell ‘ya! Now he says to me, “I am building memories”. Even the kids laughed at this!
Katie has “Unavailable Hair”…
At night, when I tuck Katie into bed, I usually scratch her back as we say prayers. Sometimes this includes playing with her hair. Well, one night she had her hair in braided pigtails and while I was scratching her back, she said to me “ Mom, rub my feet since my hair is unavailable”. Of course I cracked up and then rubbed her feet. This child is 9 years old, as tall as I am, and has size 8 shoes. She has got to be feeling the growing pains everywhere!
Christine is not a Girl Scout…
Today we delivered G.S. cookies to the clinic. We walked through the clinic parking lot with Chris’ wheelchair loaded down with cases of cookies in the seat- as she walked behind it using it for balance. Now, to anyone watching us they might have thought I was a candidate for the “Mother of the Year” or should I say, “Monster of the Year” because here is this bald, unsteady child pushing a wheelchair full of cookies through the hospital parking lot. Oh well, they will have to live with that thought.
Anyway, as we slowly made our way through the parking lot, she turns to me and says, “I’m not even a Girl Scout and I’ve sold more cookies than Katie”. I reminded her that she sold them to the people she knows: at the physical therapy center, bead store and to the clinic nurses. She responds with “I’m way too far into this cancer thing!”. Amen!
Well, that about sums up our life this week.
Please keep Bailee in your prayers. She has been at Sloan Kettering for 6 months now following her bone marrow transplant. They are fighting off the EBV virus that has appeared in the brain region. She is from the Tampa area and misses being home with her family and friends. Bailee and her mom are holding up very well and are optimistic they will beat this and get out soon. Prayers are always welcome. Pray for a speedy treatment plan that allows her to get out and return to the Ronald McDonald house and eventually home! We miss her sweet freckles around here.
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #2 of Irenotecan 02/23/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (canceled as of today due to weight gain: 108lbs.)
Saturday, February 19, 2005 9:57 PM CST
Today was a great day at the Bone Marrow Drive! Jane and Rock Snow did a tremendous job with advertising and making this happen. This was in memory of their daughter Casie. It was such a beautiful day; it was like she was smiling down upon everyone!
All together there were 47 people added to the national registry! Yeah!
David and I are two more as of today! It was easier than donating blood!
Christine’s jewelry made just a little over $200.00 to go towards the Casie Snow Fund. This fund helps pay the cost for folks to be added to the registry. How cool is that?
A HUGE THANKS to Dr. and Mrs. Lynn Hedrick for their contribution. They donated $75.00 towards the testing cost for me to be put on the National Registry. Also, Lynn came over with her 3 girls the other night and helped bead the key chains for today’s event! We had a blast watching the kids run around playing Hide-n- Seek and generally being crazy fun kids! Thank you Hedrick Family for your generosity, time and friendship. We love you!!!
I hope next time the Casie Fund does a bone marrow drive that I can help out in the efforts of planning. I learned so much from Rhonda during Christine’s fundraiser last summer. Rhonda is a real miracle worker!
Tonight I ran to Wal Mart to get Christine the movie: Raise Your Voice, with Hilary Duff. A reward for her efforts today. I am so proud of her. Tonight we picked up the Girl Scout cookies so a box of Thin Mints are in the freezer- we are going to watch a movie and pig out!
Christine’s next appointment is on Wednesday. Chemo Day.
God’s Blessings, Cathy
Friday, February 18, 2005 6:18 AM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 2.0
HGB = 8.0
PLT = 54
ANC = 600
Friday: All but the platelets remained the same, so Christine received some fresh red cells today! This should help her feel real good this weekend. I'll update after tomorrow's Bone marrow drive. We are so excited!
Wed. 2/16
Today Christine’s blood counts did not cooperate. We will return on Friday to recheck. Either the counts come up and she gets chemo, or they remain the same (or drop) she will get blood.
I’m not sure exactly how often after each dose that this happens. It seems as though it usually drops after dose #2 and #3 that she requires a break. This was dose #1 last week (course 4).
It is so important to keep this regimen going. It is the only thing that has shown improvement in the tumors and the last of treatment.
Tomorrow she is looking forward to the bead store. We will also visit Mark at his work. He is the really ‘cool dude’ who Chris loves to visit because he gives her beads. What’s not to love about this? He always makes Chris feel good by asking her opinion on things and makes nice comments about her beadwork. Warm fuzzy feelings. Thank you Mark!
Christine has been working very hard on her key chains for the bone marrow drive on Saturday. They are black and white beads with the racing flags on them (Nascar- finish line type look to them). Since there will also be a car show, we think the audience will appreciate them. She hopes to sell them for $5.00 and all proceeds go to the Casie Snow Fund. I am so proud of her for wanting to make these. She also has many other beaded items to add to the collection. Hopefully, they will sell and she can have a sense of helping others while doing what she loves!
Thank you to everyone who has sent a Valentine’s Day card. This was very sweet and much appreciated!
Yesterday Christine received a package from Canada with beads in it. A Caringbridge gal who has been following Chris’ site had beads she wasn’t using and sent them to her. Very cool beads. I love the two with the Canada flag on them! Christine and I were impressed that this lady took the time to package these up and mail them to her. Thank you!
Please keep Bailee in your prayers. She has been at Sloan Kettering for 6 months now following her bone marrow transplant. They are awaiting news on the EBV virus that has appeared in the brain region. The doctors meet today to discuss the treatment plan. She is from the Tampa area and misses being home with her family and friends. Bailee and her mom are holding up very well and are optimistic they will beat this and get out soon. Prayers are always welcome. Pray for a speedy treatment plan that allows her to get out and return to the Ronald McDonald house and eventually home! We miss her sweet freckles around here.
Remember the BONE MARROW & BLOOD DRIVE and Car Show in memory of Casie Snow.
Saturday, Feb 19th from 10 - 3 p.m.
Hillsborough Community College - Dale Mabry Campus
Bone Marrow Registration is easy & painless
There is no cost to you ...Someone may be waiting ...
contact frances@tamparacing.com for more info
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Sunday, February 13, 2005 11:56 PM CST
Happy Valentine’s Day!
Today is not just a day to buy flowers or chocolate but rather a day to remind us to stop and tell the people we love how important they are to us. A day to cultivate romance and foster good will towards others.
Happy Birthday Rhonda! Hope your day is filled with love and God’s Blessings.
Last Friday Christine and I went to Raymond James to sell her jewelry. It was a huge success and we met some fantastic people! The employees in the IT department are awesome. Thank you Debbie and gals for helping us.
Thank you Barry, Hope and Melissa (yes, the previous sales girls) for helping out during the sale again.
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College from 10 AM- 3PM. There will also be a car show and other goodies, plan on bringing the family out.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #1 of Irenotecan 02/09/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Wednesday, February 9, 2005 7:33 PM CST
FYI
The Advertising Council and CureSearch National Childhood Cancer Foundation have teamed up to launch a Public Service Announcement (PSA) to help children with cancer and their families receive the resources and support they need to conquer childhood cancer. Miss America 2005 Deidre Downs will support the foundation's campaign as part of her year of service as Miss America 2005. Cancer is the No. 1 disease killer of children in the United States. Forty-six children are diagnosed with cancer every day in the United States. The campaign aims to raise awareness that childhood cancer - while growing in incidence - is increasingly curable. Created pro bono by Y&R, the TV, radio, and print PSAs feature the juxtaposition of life "before" and "after" a child is diagnosed with cancer. In one spot, a child asks, "Why do they call it a funnybone? Why can't penguins fly? Can we go to the moon on vacation?" Actress Jodie Foster then provides a voice-over, which says, "If you think it's tough answering these questions, imagine the ones you'll get if your child is diagnosed with cancer. CureSearch.org can help... You're not as alone as you feel."
This newsletter is compiled weekly by MediaPost staff writer Amy Corr. Past issues are archived at the MediaPost website. Your comments, questions and submissions are always welcome and appreciated.
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 2.2
HGB = 8.5
PLT = 78
ANC = 1000
Hello,
The picture above is Christine and baby "Chrissy". This past weekend they got to meet in person for the first time. Thank you Connie and Frank for a wonderful time Saturday!
Chris did get her chemo today. Her counts weren’t as good as I would have like them to be since she had approx a 3-week break. I think next week may be questionable on her chemo if her counts don’t rebound quickly. We’ll cross that bridge later.
I received a copy of the radiologist report from her last MRI:
Brain:
1: Continued decrease in the abnormal enhancement involving the right temporoparietal and left parietal region since the prior study.
2: Improvement in the right cerebellar enhancing lesion which is barely visible on the current study.
3: Mild left sphenoid sinus disease.
C-Spine, L-spine and T-spine:
1: Mild thinning of the cord at the C-2 level which may be secondary to post radiation changes.
2: Post radiation changes within the vertebral bodies.
3: There is no canal stenosis.
Well, there you have it! Sounds fantastic, Praise God!
Again the roller coaster ride continues to thrill.
I spoke to one of the nurses today after going over Christine’s history with her and I asked her if this news was hope or false hope. I guess I didn’t care what her answer was, just wanted to voice my concerns.
I know that Doctors don’t always have the answers, God does. That is where we will plant our heart and feet. Miracles do happen every day and we will not give up the fight.
This week:
Chris had PT on Monday and again on Thursday.
Pastor O’Brien came by on Tuesday. She has only 1 more lesson until she is able to make Confirmation and Communion.
On Wednesday she had clinic for chemo.
Friday is the big day at Raymond James for Christine to sell her jewelry.
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College at 10 AM.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #4 dose #1 of Irenotecan 02/09/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Thursday, February 3, 2005 10:57 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 2.1 (very low)
HGB = 8.9
PLT = 84
ANC = 800
Hello,
Christine had her MRI today.
We started the day at the ACH clinic to get her port accessed for the MRI. They needed her accessed to do the scan with and without contrast.
I also inquired about the Rx refill we needed for the Thalidomide. I left a message for the nurse on Monday explaining we had 7 days left and needed the doc to do the survey for the authorization number, etc.
I was told the Doctor is scheduled on the hospital floor this month and did not get a chance to call the company for an Rx. So this would require us another trip back to pick up before next Tuesday. The pharmacy cannot fill it without a paper script in their hands and I also have to do a phone survey. It seemed complicated at first, but now it’s routine. The clinic is trying to get other doctors on the list so it doesn’t always land in one doctor’s lap.
While we were there, Christine and I were asked to participate in a study. It’s through HOPELAB and it’s to see how a video game they have produced, called Re- Mission, helps teenagers with cancer. They want to find out how well the video game helps provide patients with information about cancer, and how it affects their attitudes about cancer and their ability to follow their medical treatment plans. This has no direct impact on her, but future children may benefit from the knowledge gained from the study.
There are several qualifications that Christine meets and she is very excited to hear that they will pay her to play a video game for 1 hour a week for 3 weeks. Geez… a kid gets paid to play a video game? She’s all about that!
My main concern was that we would be able to back out at any time, and they assured me we could. Along with the “fun” part of playing the game at home, the parent needs to fill out a questionnaire (3 total) each time they are at the clinic. I know from previous studies that this means an abundance of very difficult questions about cancer, quality of life, and repeated distressing issues to read while your child receives their chemo. While this poison drips into them, hopefully saving their life, you’re coping with a survey at the same time. I think it is worth a try though. Christine sure is excited to get the game and possibly make a $100.00 for doing it. I don’t want to disappoint her.
After the survey info was done we ran up to Palm Harbor for her MRI. Meanwhile, I forgot to ask the nurse for the de-accessing heparin for her port. When we finished the scan and I removed her port needle (after flushing with saline) we called the nurse on the floor of the hospital and she said, “Yes, it has to be Heparin!”
So the doctor on call was paged and I asked her about the need to be seen tonight at the hospital or could it wait. Dr. Grana felt since Chris was flushed last week that bringing her down to the clinic in the morning would be fine. Chris is not happy about having to go back tomorrow, but she also did not want to stay accessed overnight (which is why we took the needle out in the first place). I wish the MRI lab carried Heparin. Oh well…Live and learn.
I guess it works out after all since Dr. Grana told me over the phone that she had the Rx for Christine’s Thalidomide ready. Hey, two birds with one stone.
During the MRI, I stayed in the room with Chris. Other than occasionally seeing Diego run in and change Chris’ position did I have a chance to ask how things looked. He smiled and said “Good”.
I explained that if the scans are stable or improved, we have chemo next week, if not, we stop. He said Chris would have chemo next week since it appears to be making a difference. Praise God! I will hope to have final results from the radiologist tomorrow or Monday. Please keep the prayers coming!
This week was pretty quite:
Chris started English tutoring with Mrs. Gibson.
Pastor O’Brien came by on Tuesday. She has only 2 more lessons until she is able to make Confirmation and Communion.
On Wednesday we visited Mark at his world famous bead store. How awesome!
Today and tomorrow are clinic type days.
Saturday is the grand finale: Lakeland to visit the horses with Connie and Frank!
Everyone here is very excited to escape the city and relax around the country and the smell of horses! Next to the smell of fresh cut grass in the spring, the smell of horses is a pleasure to the senses. Plus we all miss Connie and Frank too!
On Sunday the Children’s Cancer Center has invited all the families to watch the Superbowl.
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College at 10 AM.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #3 dose #4 of Irenotecan 1/18/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Tuesday, February 1, 2005 1:01 PM CST
Hello,
We have the MRI scheduled for this Thursday. Please say a prayer for good results.
I am very nervous this week since I have seen some additional loss of balance.
Maybe it’s the chemo; maybe it’s her being tired. I’m not quite sure, but it does make for some bumpy times when I see her walk and suddenly grab a counter or table to secure her from falling.
All other areas we have been watching are o.k:
No headaches, no vomiting, good memory skills, vision etc. Please pray the balance will correct itself.
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College at 10 AM.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #3 dose #4 of Irenotecan 1/18/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Thursday, January 27, 2005 3:47 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Christine’s blood work today:
WBC = 3.4 (up)
HGB = 10.7
PLT = 50
ANC = 900
Hello,
We had to cancel the MRI today. The tech (Diego) that was scheduled to do the MRI called and said he was very ill and was leaving work.
We have the scan scheduled for next Thursday.
We kept the afternoon clinic visit. Since we planned on going there to have her port accessed anyway, we got the blood work out of the way for week. Since Chris had chemo last week I’m pleased the numbers were as good as they were. No blood products needed this week! Yeah!
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College at 10 AM. Christine and I will meet with Jane Snow to discuss some ideas on selling her jewelry to help raise money to deflect some of the cost involved with the drive.
Typically, it cost around $75.00 for someone to be on the donor registry. Unfortunately, most folks don’t have that amount when they are donating blood, so they pass on becoming a bone marrow donor. When a drive like this is sponsored, it picks up the cost for the individual to become a donor (if they qualify). I will have more info. on this as we move closer.
I am not currently a donor, so I am looking forward to becoming one!
Please join us, or if you would like to sponsor a small portion of the event, even $5.00 (the cost of a lunch) please let me know. Thank you so much!
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #3 dose #4 of Irenotecan 1/18/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Wednesday, January 26, 2005 6:30 AM CST
Hello,
Tomorrow Christine has her MRI scheduled at the Palm Harbor Imaging Center.
Please take a moment to say a prayer that the results are good. If they are stable or improved, we proceed with this chemo. If not, we stop and wait for either a miracle or a cure to be found.
The MRI will be for the brain and total spine. Every-other scan appointment is for the spine. Since the spine takes longer to do, it is difficult to lie in the machine that long every time we scan. Thank God, Chris has so much patience. She really does a good job of staying still in a small, confined (and loud) machine.
The radiologist is off on Friday so we can expect results on Monday.
We continue to stay busy beading and doing schoolwork.
Mark your calendars for February 19th. There is a bone marrow drive in honor of Casie Snow at the Hillsborough Community College at 10 AM. Christine and I will meet with Jane Snow to discuss some ideas on selling her jewelry to help raise money to deflect some of the cost involved with the drive.
Typically, it cost around $75.00 for someone to be on the donor registry. Unfortunately, most folks don’t have that amount when they are donating blood, so they pass on becoming a bone marrow donor. When a drive like this is sponsored, it picks up the cost for the individual to become a donor (if they qualify). I will have more info. on this as we move closer.
I am not currently a donor, so I am looking forward to becoming one!
Please join us, or if you would like to sponsor a small portion of the event, even $5.00 (the cost of a lunch) please let me know. Thank you so much!
Happy Birthday Katia! The big “5”! A whole hand today!
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #3 dose #4 of Irenotecan 1/18/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Friday, January 21, 2005 7:53 PM CST
Hello Weekend!
Today was Spirit Day at school. Christine and I went to watch and help out.
Katie was very excited to spray paint her hair green and white!
Her 3rd grade class worked very hard a cheer they wrote and then performed in front of the entire school.
Each grade competed, and unfortunately, Kate’s class did not win this year. But they did an awesome job! I was so proud of them!
I worked in the snack bar afterwards, and every so often I would look over and watch Christine sitting at the picnic tables. She is not real big on conversation or “small talk”, so it’s hard for her to really socialize with everyone. After everyone says, “Hi, how are you?” “I’m fine”, the conversation pretty much ends. It’s sad that she really doesn’t have much in common with everyone to share stories or classroom gossip. I was glad to see Katie sitting there with her friends hanging out with Chris also. Typically Katie keeps her distance when she’s around her classmates. She continues to surprise me!
I received a message from the doctors regarding her Thyroid test last week. Other than the T-4 being slightly elevated, all the other numbers are within range. At this time they don’t feel there is a need for action. Not sure what the T-4 is, so when I take Chris to the clinic next we will ask.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Christine received course #3 dose #4 of Irenotecan 1/18/05.
Celebrex, Thalomid, Protocel and Septra.
Appetite enhancer- Megace (every other day as of 1/20/05)
Tuesday, January 18, 2005 10:53 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Tues. Jan. 18, 2005:
WBC = 2.6’ish
HGB = 10.’ish
PLT = 80’ish
ANC = 900
Yeah! Christine’s blood work has qualified today for dose #4!!!
Now she’ll get her 2- week break! We have a tentative schedule for the MRI: Thursday, Jan. 27th.
I’ve looked around for today’s clinic paperwork but can’t seem to find it. I went by my memory on the numbers of her blood counts. That is why you see the ‘ish behind the numbers. Old age…
We talked to Claudia (PA) about the sensation of always being cold and requested that Christine’s thyroid be checked. She had extra labs drawn and we should know something by tomorrow.
Today started out bumpy when Katie woke up in the middle of the night complaining of a sore throat. Typically this means streph (sp) throat. She has a long history of this. I checked her temp/ throat and it looked so red and inflamed, I knew it meant a trip to the doctors for her. She stayed home from school and missed Brownies tonight.
Pastor O’Brien came over for Christine’s confirmation and communion lesson this morning. After he left, we ran down to ACH for Chris to get her chemo and then ran to the pedi. office for Kate. Turns out it is not streph throat.
Katie was a real trooper when we had her wear a mask while she was at the clinic. The last thing we needed was to infect Chris or someone else there. She is so fashion conscious that I knew it had to bother her, but she understood and did it graciously.
As we were loading the car this morning, Chris and I were walking hand- in- hand out to the car and she stumbled and fell. I think only her pride was hurt at the time. As she entered the car, Katie ran out of the house crying.
Apparently, she ran into the house to grab a couple of drinks for her and Chris for the ride and she banged her head on the freezer door handle and hurt more than her pride!
Could this get any worse? I stopped and looked up and said, “Lord, help me through this day”!
I have one kid in the car that had just fallen on the cement, on the way to get her chemo and another child home sick with a cold that just injured her head… Now you understand why I don’t remember where I put the clinic paperwork today.
Actually, the day turned out better. Clinic for Chris was successful and it was the fastest we ever got in and out of there. The doctors for Katie resulted in good news and she did feel pretty good all day.
I even took a very long, hot bath tonight and tomorrow looks rosy.
Tomorrow night a group of gals I know through the Cancer Center are getting together at the PF Changs for dinner. We will miss some of the folks who aren’t able to join (yes, Robin, we miss you so much!) but we will make up for it!
On a different note- I have in the past received some very nice e-mails asking about Christine’s Creations. I have had one in particular that I tried to respond to but it comes back “undelivered”. Please accept my apology for not responding- it’s just that I have no other way of communicating with you.
Prayers and love to the Pezzuti Family. Merlin, their beloved Great Dane has passed away this weekend. He was a magnificent dog and a special family member. I am sure he will be terribly missed. Maria, my heart goes out to you.
Thank you Chuck! For your time and the use of your truck today in moving that furniture out of our garage! Your very nice to do that for us!
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Today Christine received course #3 dose #4 of Irenotecan.
She continues to take Celebrex, Thalomid and Protocel.
She has one antibiotic- Septra.
Appetite enhancer- Megace.
Monday, January 17, 2005 7:45 PM CST
Chris has clinic tomorrow for blood work and if it looks good she will receive the 4th dose of chemo. Please say an extra prayer that she qualifies for it. Afterwards she will get a 2- week break!
We have stayed very busy clearing out our garage this weekend! Yeah! Amazing how much junk we have managed to collect after 18 years of marriage, 13 years of living in this house, 2 kids later… you get the picture. Pretty ugly. But now it looks so nice. I laughed and said to David that I might actually get a car in here now. We agreed it would have to be a mini cooper.
I think anyone who lives in Florida can understand our situation. We have no basement, no attic, so everything ends up in the garage (except a car).
The weather has gotten a little cooler here and it made for perfect weather to clean out the garage. Except Christine was bored to tears. Since she was unable to physically help us, and the cold air made her miserable she stayed inside most of the time. She was given ‘missions’ like being in charge of making lunch, etc.
Tomorrow when we see the doctor I am going to ask about her being cold all the time. I have chalked it up to being caused by little body fat and low physical activity that doesn’t create enough body heat for her.
I spoke to Cousin Jeff over the weekend and explained that Chris was in the house because she was cold. He suggested getting her thyroid checked. Apparently, there is cause enough to think her body has endured so much chemo/ radiation and since the thyroid may have been altered- we can investigate it further. I am not sure what, if anything can be done but it is worth a try.
I’ll update after the appt. tomorrow.
Please give blood if you are able! God knows so many people depend on it for life!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Last week and this week Christine did not receive course #3 dose #4 of Irenotecan because of low blood counts.
She continues to take Celebrex, Thalomid and Protocel. She has one antibiotic- Septra. Appetite enhancer- Megace.
Friday, January 14, 2005 2:55 PM CST
Christine received her blood today! Yeah- she’ll feel so much perkier this weekend. She’ll need it with Katie home 3 days because of the holiday on Monday!
When Chris gets blood it usually takes 2 office trips (or an admit over at the hospital) due to the length of time it takes to order, receive and then infuse over 2 to 4 hours (depending on how many units she needs).
Since most of you know, Chris is not a morning person; so all appointments are made for 1:30 when the clinic opens back up from lunch.
From the time she gets her port accessed, they review her CBC, the Doc orders the blood, it usually takes up to 2 hours. Once the blood is ordered and the pharmacy does their magic, voila’ we have blood! Only too bad… it is now 3:30 and the clinic closes at 6:00. The nurses are fabulous, but want to go home after a long day. Can you blame them?
Anyway, this all translates into “come back tomorrow, the Wizard will see you then”, or she gets admitted on the oncology floor at ACH. Of course the hospital route means we go through Admissions and hosp. paper trails… and it turns into midnight before she is released. She loves it though- only when she gets a private room and can lay down in a bed with a remote in one hand and the phone in the other calling ‘room service’ for snacks. Ha Ha!
Of all the times she was admitted for treatment she never liked it (who would?). But now she knows she is only there for a short stay and makes it a party! That’s my girl!
Please give blood if you are able! God knows so many people depend on it for life!
I’ll update more later. Please pray she is able to get her 4th dose of chemo next week. I really want to complete this cycle so they can do another MRI. Or not. I’m scared and anxious and yet I know we need to have this info. to proceed.
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Last week and this week Christine did not receive course #3 dose #4 of Irenotecan because of low blood counts.
She continues to take Celebrex, Thalomid and Protocel. She has one antibiotic- Septra. Appetite enhancer- Megace.
Thursday, January 13, 2005 3:58 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Thurs. Jan. 13, 2005:
WBC = 2.6 (up .4)
HGB = 7.7 (down .2)
PLT = 74 (up 9)
ANC = 800 (up 200)
Today was an unscheduled appointment for blood labs. Christine woke up this morning feeling really weak and sluggish. She walked around a little bit and was out of breath. She said to me “I need blood”; so I knew it was time to go to the clinic. Sure enough, hemoglobin is down and we will return tomorrow for the transfusion.
They first did the finger poke and the counts looked really good: HGB 8.8. Everyone couldn’t believe as pale as she was that her counts would actually have come “up” from Tuesday. They accessed her port and it came back 7.7. Low enough for blood transfusion. By now, an hour and a half passed by and it was too late to get the blood infused before 6:00 closing, so we will return tomorrow AM and get it done.
Yes, our mystery girl is still at it! She remains sassy and happy and loving as ever! She is amazing.
I’ll update more later. Please pray she is able to get her 4th dose of chemo next week. I really want to complete this cycle so they can do another MRI. Or not. I’m scared and anxious and yet I know we need to have this info. to proceed.
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Last week and this week Christine did not receive course #3 dose #4 of Irenotecan because of low blood counts.
She continues to take Celebrex, Thalomid and Protocel. She has one antibiotic- Septra. Appetite enhancer- Megace.
Tuesday, January 11, 2005 10:25 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Tues. Jan. 11, 2005:
WBC = 2.2 (up .3)
HGB = 7.9 (down .1)
PLT = 65 (up 14)
ANC = 600 (up 100)
No chemo today. HGB is below 8.0 and that’s when they transfuse. Since Christine hasn’t had any symptoms; light headiness, dizzy etc. we chose to not transfuse. The Doc listened to her heart and felt we were safe to just keep on eye on her and return Friday for more blood work.
Possibly, if the hemoglobin comes back up on it’s own, she will get her last chemo before the break.
I’ll update more later.
Monday, Jan. 10
Hello all,
Christine has been doing really well this past week. Her energy level and appetite are good. Other than losing most of her hair, she hasn’t complained of anything. Well… yes, but the typical things most 13 year olds complain about.
Most importantly, she has not had any headaches or vomiting.
Tomorrow she is scheduled her chemo. Dose #4 of this cycle and then will get a two week break with an MRI afterwards.
We enjoyed the break from chemo last week. Chris enjoyed higher energy level and we got out and about town this week.
Katie is selling Girl Scout cookies now. Kate and Christine had a lot of fun Saturday when Katie’s friends came over to travel our neighborhood to pre-sell cookies. Chris rode her bike and became “home base” for everyone at the end of the driveways.
Sunday we had free tickets to the circus at the St. Pete Times Forum. Thank you Children’s Cancer Center!! We had an awesome time. There was food in the suite for everyone and the show was terrific!
Please continue to pray for all those who battle!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
May you have an awesome day.
God’s Blessings, Cathy
Medical Note:
Last week Christine did not receive course #3 dose #4 of Irenotecan because of low blood counts.
She continues to take Celebrex, Thalomid and Protocel. She has one antibiotic- Septra. Appetite enhancer- Megace.
Wednesday, January 5, 2005 8:46 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Wed. Jan 5, 2005:
WBC = 1.9 (down)
HGB = 8.0 (down 1.8)
PLT = 51 (down 16)
ANC = 500 (down 300)
Today was a scheduled clinic day for chemo #4. Christine’s blood work was so close to the threshold numbers- it was decided to hold one week. By next week she will rebound on her own. The thought was, if she received it today she would most likely drop further and then need blood products before next week.
Overall, Chris feels great and has good energy. Feisty as ever!
Monday, January 3, 2005
Happy New Year!
2005
Last year at a glance:
January- MRI showed metastic disease in 3 regions.
February- Nothing was noted on the calendar. I suspect we managed just to cling to each other and make it through the days.
March – Angel Flight Services to Duke Medical Center. Started 3 new drugs: Sotret, VP-16 and Celebrex.
April- Allergic reaction to drugs which later was discovered to be the sunscreen. Grandpa and Grandma visit. Aunt Liz and cousin Jeanie visited.
May- Started back drugs one at a time. Summer vacation started for Katie.
June- Kite Camp at the Children’s Cancer Center. Faces of Courage day camp. Field trips galore.
July- Fund Raiser. Duke for MRI. Results showed additional disease in regions of brain. All 3 drugs stopped. Reviewed our options. Chose to stay local for treatment. The drugs are Phase 2 study drugs. All Children’s Hospital Hem/ Oc put Chris on Irenotecan (clinic infusion once a week), Celebrex (twice daily at home), and later in Nov. put her on Thalomid (once a day at home).
August- Celebrated 18 year Anniversary. David and Kate’s birthday. Kate started 3rd grade.
September- Christine’s birthday. Aunt Jackie and baby Lily visit. Started Protocel.
October- MRI. Results showed “stable”. Continue on with Irenotecan. Pastor O’Brien started Communion and Confirmation lessons. Mural painted on Christine’s wall.
November- MRI on the 17th. Results showed “stable” and one region improved. Again, we continue on this course of meds. Grandma visited 4th – 9th. Aunt Chris and Colletta visit over Thanksgiving.
December- Head laceration- 3 staples. Adopted by Olive Garden for Christmas. Christmas celebrations!
Throughout the year it has been filled with clinic appointments and Physical Therapy twice a week.
Of course, our year would not be complete without all the wonderful people and places we went. The horses with Connie and Frank are always a favorite. Shopping, beading and movies… the list is endless! Thank you to everyone who has blessed our family with friendship, prayer and support.
As I look through the year, it saddens me to see the Angels we have lost to this battle. Michael, Casie and Olivia are a few we know and love!
The battle continues for Christine, Bailee, Christina and Katia and the list is so long it is a crying shame!
We celebrate the end of treatment for a couple girls we know: Emily and Molly! Awesome, way to go girls!
Your following our journey and being part of our lives has encouraged us and inspired us. Please sign the guestbook, as Christine loves to get mail!
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks US Episcopal bishop (1835 – 1893)
xoxo
May you have an awesome day. God’s Blessings, Cathy
Medical Note:
Last week Christine received: Course #3 dose #3 of Irenotecan.
She continues to take Celebrex, Thalomid and Protocel. She has one antibiotic- Septra.
Thursday, December 30, 2004 9:44 PM CST
Thursday- two days left in 2004!
Christine’s favorite part of the day: “Dinner, the family sat together and it was a meal I liked”. (Chicken Soft Tacos)
Katie’s favorite part of the day: “Riding my bike and scooter”. “Oh, and Grandma brought over McDonalds for lunch and we went to get her rental car”.
David’s favorite: “Coming home”.
My favorite: Going to the bead store and meeting Lynn and Hanna to look for special beads.
Alexa was over yesterday to hang with the girls and they all had a nice time. It is always so much fun to see the girls interacting and playing games with friends. Thank you Alexa! We look forward to seeing her again tomorrow when we go to the mall. The girls have some gift cert. to use and are excited to spend them!
Chris seems a bit more tired today and yesterday. Guess the chemo is reaching up to her sooner than usual. She has been bothered again by the sensation of always feeling like she has to urinate. Every 20 minutes she feels like running to the bathroom. We have seen this before and am not sure why or what is changing in her diet/ chemo cycle that causes this. If anyone has any suggestions or experience in this, I’d like to know. She doesn’t have any burning- so I am not sure we want to run tests for UTI yet. We’ll see.
On a different note:
As some of you may remember I worked at Sunstar for 14 years. I left to take care of Christine. On the last week I was there (Oct. 2002) I hired a young man into the Materiel’s Dept. by the name of Antoine. He took great pleasure in reminding me of this fact when I went back to visit the folks at Sunstar.
Last Monday night there was a tragic accident in which an ambulance he was driving backed into a young lady who was recently hired 2 months ago. She died on Tuesday. Not only is her family deeply affected by this tragedy- but also the life of this fine young man is forever altered. Please join me in prayer for both of these families as they enter into a new and uncertain chapter in their lives.
Your following our journey and being part of our lives has encouraged us and inspired us.
We love you, Cathy and Family
Medical Note:
This week Christine received: Course #3 dose #3 of Irenotecan.
She continues to take Celebrex, Thalomid and Protocel. She has 2 different antibiotics (one is Septra, a permanent fixture since she has a port and the other is due to her head laceration last week).
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks US Episcopal bishop (1835 – 1893)
xoxo
May you have an awesome day. God’s Blessings, Cathy
Wednesday, December 29, 2004 0:57 AM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Tuesday Dec. 28, 2004:
WBC = 2.4 (up from last week .4)
HGB = 9.8 (down 1.0)
PLT = 67 (up 9)
ANC = 800 (up 300)
Hello,
Today was clinic day for chemo. Course #3 dose #3 of Irenotecan.
She continues to take Celebrex, Thalomid and Protocel. She has 2 different antibiotics (one is Septra, a permanent fixture since she has a port and the other is due to her head laceration last week).
We saw Dr. Barbosa today! Yes, Lucky # 7 visit. Our nurse asked how long it had been since we saw a doctor and while she reviewed the chart I mentioned it was funny she should ask. We wondered how long we could go without a ‘doctors intervention’ and she declared that at least once a month a doctor needed to examine the patient. Amen!
So today we saw Dr. B and he asked some general questions. He had Chris walk in the exam room a few steps and he asked if I noticed any decline in her mobility/ balance- and I had not. He asked about headaches and vomiting. Occasionally Christine has a headache, but no vomiting. I explained the headaches never reached the uncomfortable level and we never had to give her Tylenol or Motrin for them. Overall he said she looked good and said the last scans (Nov.) showed “stable”, so we would continue on this course.
We talked about Celebrex and the negative issues released in the media. He said that given the low dose Christine is on and her age, etc. that the Pediatric Cancer Foundations (?) still recognize this as an effective drug. Enough said for me. I believe that whatever is working is a good thing and if this drug causes heart problems in elderly patients- I can trade my worry for the benefit it is giving her.
My favorite part of today was tucking the girls in bed.
Kate’s giggles are so incredible and intense. The more I tried to quiet her the more she wanted to giggle. Kind of like when you are in Church and you know you shouldn’t laugh- but you can’t stop! It hurts so good!
Christine and I were making small talk and she stated she was a “Mall-aholic”. What? We all heard the expression “Shop-aholic”, well in all honesty she did not remember that term except she was sure she was one of them! We laughed because it truly fits Christine: unique.
She asked me a question. How could a mother love a child so much?
She didn’t know if she could ever love a child so deeply. Like, just look at how much she thinks her sister is a brat and how could someone put up with someone else being a snotty little brat who doesn’t mind all the time? Yikes!
I explained how a mother’s love has patience and forgiveness. The conversation went deeper and turned into how much love God must have for all his children. I told her with all the stupid things we do, Thank God he forgives us. That sometimes I take comfort in knowing when the world goes mad and so much is wrong and there is so much devastation that I can always say “It’s your problem Big Guy- not Mine!” She of course laughed and said that God probably wouldn’t think it was funny we were laughing at his problems but we both agreed he would most likely be glad we were talking about Him.
Thanks for letting me share this bit of history from today with you. I really want to capture the daily events of our lives in this journal. I want to look back and be able to read to both my children what our days were like when we traveled the journey of cancer.
Your following our journey and being part of our lives has encouraged us and inspired us.
We love you, Cathy and Family
P.S.
A dear friend, Bailee, is in New York at the Ronald McDonald House recovering from her bone marrow transplant. Her family is from Tarpon Springs, Fl. and with the holidays here, please take a moment to drop a card in the mail and let her know that Tampa Bay misses her and wants her healed and home right away!!!
Send cards to:
Bailee Dunnigan
RMH
405 E. 73rd Street Room 602
New York, NY 10021
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Monday, December 27, 2004 12:03 AM CST
Hello Monday,
We hope everyone had a wonderful Christmas!
Ours was terrific- the girls had a magical time.
Christine continues to feel well. Tomorrow is clinic day for chemo. Since she had a break last week, she should qualify for it.
Last Thursday night we went to the Olive Garden for dinner and Christmas celebrations. They adopted the girls again this year. The company and the events were beautiful! Thank you Wink and all the staff at Olive Garden for making this so special!
Christine and Katie are very excited to see their friends, Gretchen and Katarina on Wednesday. Since they moved to Pasco Co. it has been hard on Chris to be so far away from her friend! I know they will have a wonderful time together! Chris is hoping to get another friend, Alexa, to come over and hang out so they can all be together! We’ll have to plan something special to do while they are here!
I’ll update more later.
Your following our journey and being part of our lives has encouraged us and inspired us.
We love you, Cathy and Family
P.S.
A dear friend, Bailee, is in New York at the Ronald McDonald House recovering from her bone marrow transplant. Her family is from Tarpon Springs, Fl. and with the holidays here, please take a moment to drop a card in the mail and let her know that Tampa Bay misses her and wants her healed and home right away!!!
Send cards to:
Bailee Dunnigan
RMH
405 E. 73rd Street Room 602
New York, NY 10021
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Thursday, December 23, 2004 12:37 PM CST
Hello Everyone,
Boy, what a fabulous week so far!
I’d like to say Happy Birthday today to my sister Chris!
And Thank You to everyone who has touched our lives!
Thank you for the prayers and hope that have blessed our family. We are celebrating this beautiful Christmas season together.
We ask you to continue to pray for the strength and comfort for so many of our friends who are in the hospital.
And especially for those who are suffering the loss of their little ones. How difficult it must be, particularly this time of year. I cannot imagine the pain they must be feeling, yet have walked so closely. This Christmas is our miracle. We are lucky and never take it for granted.
We draw our strength from these families and learn to appreciate every day as never before dreamed possible. The greatest gift is the everlasting peace we all have because of the Lord’s promise.
I wish you all a beautiful Christmas, surrounded by love and peace in your hearts.
Your following our journey and being part of our lives has encouraged us and inspired us.
We love you, Cathy and Family
Wednesday, December 22, 2004 8:48 AM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Tuesday Dec. 21, 2004:
WBC = 2.0 (down from last week .1)
HGB = 10.8 (down 1.8)
PLT = 64 (down 6)
ANC = 500 (down 500)
Chemo was canceled yesterday. Christine’s counts barely qualified so we decided to give her the break this week for Christmas. If she had gotten chemo she would have bottomed out and had a lot of weakness and general fatigue. Of course we know from her history with this drug, Irenotecan, it would prevent her from getting it next week anyway. So the suggestion was made that we use this week as her break and hope next week her counts are up on her own and we can resume schedule.
This was music to her ears. Boy, it’s sad that a child gets a Christmas present wrapped up like this. So of course we celebrated her new “freedom” by leaving the clinic (rather quickly) and I did what any other mom who loves her child… we went to the bead store to buy beads! Yes, we’re hopelessly addicted to beading. Nothing else lightens up Christine’s face than these 3 words: Mall, Horses and Beads.
One thing that sticks out is how we have managed to make 6 appointments (in 6 weeks time) and have not seen a doctor once. We have nurses who take wonderful care of Christine, but I still can’t figure out how they can administer a chemo drug and a blood transfusion and never see the patient.
At this point I am seeing how long it runs without seeing a doctor. When the first doctor comes in to examine her, I will congratulate them and express my thoughts. If Christine displays any symptoms that concern me or if she needs a doctor’s care- I will demand to see a doctor. But until then I just want to see. After the first of the year we may transfer care over to their Tampa office.
I have learned also that our insurance covers blood work/ labs at no co-pay. Currently we are paying every time we walk in the door. When I inquired as to why we are being charged they stated it is their office policy since the child ends up being seen by a doctor anyway. What?!? I will be sure to point out the dates we were not seen by a doctor.
On a much better note:
A huge THANK YOU to everyone at Raymond James who bought Christine’s jewelry. Not only did everything sell but also many folks made a donation to her that I was amazed by the support! None of this would have been possible if not for Barry, Hope and Melissa. These two cute girls set up Christine’s Creations in the hallway and within 45 minutes everything sold! I see a future in sales for these young ladies!
Chris is so motivated to start her Valentine’s jewelry (that’s what we went to the bead store for). How fun it is for her to do something that brings her pleasure and is appreciated by others. It’s very fulfilling for her.
Today the girls are baking cookies and watching a movie at Erin’s house. This will provide me a break so I can pull out some of the Christmas items I’ve tucked away through the year and get some wrapping done.
More later…
P.S.
A dear friend, Bailee, is in New York at the Ronald McDonald House recovering from her bone marrow transplant. Her family is from Tarpon Springs, Fl. and with the holidays here, please take a moment to drop a card in the mail and let her know that Tampa Bay misses her and wants her healed and home right away!!!
Send cards to:
Bailee Dunnigan
RMH
405 E. 73rd Street Room 602
New York, NY 10021
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Sunday, December 19, 2004 4:35 PM CST
Hello to a crazy Sunday!
Chris went to the E.R. today because of a fall. She has a 2cm laceration on the back of her head.
She was coming out the laundry room door when Max, our golden, wanted out faster than she did! This caused her to lose her balance and fall. I watched the whole thing like it was in slow motion. She really had a control on the fall, until the curb of the step (6”) greeted the back of head sooner than she had expected.
After the initial impact there was very little bleeding, but the sound of the “crack” as she hit the step was still ringing in my ears!
I called the doctors office and spoke to Dr. Grana who explained she would have to be seen in the E.R. because of the nature of the injury.
We made it down to All Children’s Hosp. and Chris was taken care of very well. I thought the staff and Doctor did a fantastic job getting us seen and out the door in less than 3 hours. They numbed the area and gave her 3 staples. Since she had no loss of consciousness and no vomiting we were lucky that it was only 3 staples!
Of course anytime it involves her head I get really wigged out! This poor girl doesn’t need any more issues to deal with right now! I of course worry about internal bleeding or infection. Mom’s always worry- that’s why we get paid the big bucks! Payments of kisses and hugs and all the love to last a lifetime!
On the other hand (or I should say the other child)…
Katie needs to see the doctor tomorrow for her ear infection. It has really been bothering her this weekend. It started out as a simple cold and moved into her sinuses and ears. I tried to get an antibiotic called in today, but since its Sunday… no luck without seeing a doctor first! Motrin is her saving grace right now!
More to report on the holiday events but I want to post this and get back on later. I think I need a napJ
P.S.
A dear friend, Bailee, is in New York at the Ronald McDonald House recovering from her bone marrow transplant. Her family is from Tarpon Springs, Fl. and with the holidays here, please take a moment to drop a card in the mail and let her know that Tampa Bay misses her and wants her healed and home right away!!!
Send cards to:
Bailee Dunnigan
RMH
405 E. 73rd Street Room 602
New York, NY 10021
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Wednesday, December 15, 2004 5:16 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Today, Wednesday Dec. 15, 2004:
WBC = 2.3 (down from last week 1.1)
HGB = 12.6 (up because of transfusion)
PLT = 64 (up 27)
ANC = 1000 (down 700)
Hello,
Today was clinic and Chris received her chemo. They had increased the dose to 125mg because of some weight gain. She is officially 99 lbs!!! Yeah, she has hovered around 93 lbs forever!
Christine just announced that she wants to get a job when she is 14. Something like dog sitting or Target. I asked her why, and she said she wanted to save her money so she could get "cool things" for her and Katie and also help out Mom and Dad. Oh, and don’t forget the car she needs to save up for when she’s 16. I tell ya’ this girl has plans!
The other day we went from one pharmacy to another to pick up different drugs she needed and while we were in one of the drive-thru’s she asked me why the medicines were so much money. I replied that that’s how much they are every month and she said she didn’t need them.
I, of course reminded her why they were so important and she said, “God will make me better, I don’t need them”.
Melts my heart when she says things like that. It is so deep. I never know how to interpret the meaning of such deep spiritual thoughts. On one hand, I think of the hope and healing, and on the other, I know it is in God’s hands and I just pray it is for healing here on earth.
Christine’s schoolwork is really falling behind. I am concerned she won’t be able to keep up at her grade level. But then I remind myself that when was the last time a seventh grader had to worry about the things she has had to face? Time will tell.
Holidays are here and the place is hopping! The tree has a few more decorations on it but still needs attention! The gifts are falling into place and the house just feels so festive!
We continue to work on jewelry and want to thank Amy E. for all her help in selling them!
This Friday, I hear that Barry D. who works at Raymond James is going to be able to take a bunch of bracelets in and help sell them. Thank you Barry! It is fast becoming a way to support our Christmas expenses!
Speaking of Christmas, Olive Garden, Largo Mall has adopted us again this year. We are so honored and excited to be a part of this! They adopt a family each year that is associated with the Children’s Cancer Center and that is how we became involved with them. The employees and Wink, the manager, did such a fantastic job last year with providing our family a wonderful meal and the gifts for the girls! Boy, it was a huge deal! The girls are really looking forward to it again this year! Thank you everyone at Olive Garden!
As I reflect upon this past year, I am so grateful for all that we have. Our family continues to stay strong. Our family, school, Church, friends and people we have met along the way have truly been a blessing to us. Thank you to all of you who have prayed, listened to us when we cried, traveled to visit, and held us up. We are stronger because of you.
A dear friend, Bailee, is in New York at the Ronald McDonald House recovering from her bone marrow transplant. Her family is from Tarpon Springs, Fl. and with the holidays here, please take a moment to drop a card in the mail and let her know that Tampa Bay misses her and wants her healed and home right away!!!
Send cards to:
Bailee Dunnigan
RMH
405 E. 73rd Street Room 602
New York, NY 10021
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Monday, December 13, 2004 7:47 AM CST
Happy Monday,
Christine’s ‘fresh blood’ she received last week has made her feel so much better.
This weekend was very nice. We received free tickets to Universal Studios in Orlando. David was out of town hunting (in Ocala) so the three of us girls headed over. Thank you Children’s Cancer Center and Coca- Cola! We had a wonderful time.
It started out with a tour guide and we were first in line for all the rides. After we stopped for lunch we were on our own to explore the park. Not by choice really, we were too slow in eating and then we turned down the wrong road and missed our designated time to meet the group. We aren’t very fast in the wheelchair so things took longer than expected. I guess all in all it worked out because we didn’t slow the group down and we were free to roam around the park.
We stayed for the Macy’s parade and ate a ton of junk food! It was fun not to be a “mom” for a day, but rather a friend who bought candy and Mocha Cappuccinos. Funny how I see things differently when I remind myself that this day, this holiday, belongs to the children. If it were my last day, I would want to embrace it for all it could be. If that meant saying, “yes” to most requests, then it would be the greatest day! The girls brought home a souvenir and said they had a terrific time! It was so worth it!
The following I received in the guestbook a while back:
Someone told me that she asked God why he would not reveal to her what he has planned for her life.
She said God told her "Because you will try to change it".
Boy, is that the truth! I would change the fact that my beautiful girl has cancer and I would change the countless other things I have said or done to hurt others. Since this is not up to me, I guess I have to trust God. I pray every day that He grants me comfort to accept this fact.
Chris has an appointment this Wed. for chemo. Hopefully she will qualify, after missing it last week she should be able to get it.
Ethel from ACH is running in a marathon in honor of Casie Snow and I would love to know how she is doing. If anyone has an update please let us know.
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Monday, December 6, 2004 10:45 PM CST
Normal Blood Ranges:
White blood cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1500
Today:
WBC = 3.4
HGB = 7.1*
PLT = 37*
ANC = 1700
Hi,
Wednesday was clinic day for chemo #2. Christine’s blood counts didn’t qualify for it. We had a 1:30 appt. and she needed a blood transfusion because of her low HGB. Her platelets were low- but not low enough for this product.
We were sent across the street to the hospital to get the transfusion, since it would be after the 6 pm closing time before it was done infusing. We got admitted at 3:30 and the blood arrived at 6:30, so we were there until 11:30 tonight. This makes for a long day.
I know Chris will start to feel a lot better tomorrow. We canceled this past Tuesday’s religion class with Pastor O’Brien because she was so tired. Hopefully, the break in chemo this week and the new blood she’ll bounce back as peppy as ever.
Yesterdays Paul Harvey riddle was answered first by Erin! Way to go Erin! In case you’re not sure and you didn’t read the guestbook- the answer is “Nothing”.
We love to hear from the old and new Caringbridge folks visiting Christine’s page. Please take a moment to say hi and introduce yourself if you are new. It doesn’t need to be anything formal or profound- just “hi”. It means so much to all of us to know you are following this journey with us. Thank you for the prayers being said and please continue to pray for the people battling illness and their caregivers.
Till tomorrow…
Cathy
Hello Tuesday,
We did not make it last Saturday to ride horses. I’m not sure who was more tired- Christine or the rest of us, judging how we slept in. We were also offered Bucs tickets to Sunday’s game but everyone felt under the weather and stayed home. It was a nice opportunity to watch some videos we picked up and set up the Christmas tree. Parts of the house are decorated but there are still no ornaments on the tree. Oh well… it’s on the list.
Friday night was kind of sad. Chris’ goldfish died. He lived longer than I ever imagined. During the Fall Fun Festival she earned a ticket for a “free” goldfish at a local pet store. So off to the store Katie and Chris went to got their free goldfish. The two fish lived happily together until Friday when one unexpectedly croaked. Oh no, it had to be Christine’s fish.
I say this because once upon a time both girls had hamsters and Christine’s died within two days and Katie’s hamster lived two very long (stinky) years! So needless to say it was not a good thing for her to lose her fish first. There was a farewell send off as they flushed him down the toilet.
On Sunday Chris and Kate were having a small tiff. Chris looked over at me and whispered, “That’s it! Her fish is goin’ down!” I didn’t know whether to scold her or laugh! I did both.
Today Chris had P.T. for a full hour instead of the usual ½ hour. She did very well considering this weekend she felt pretty blah from the chemo and the colder weather keeping her inside. Thank you Gloria! We love you!
Tonight the girls went to the CCC for an outing. A limo was to pick them up and drive around while everyone sang Christmas carols and ate candy canes. From there they went over to International Plaza for dinner, Build -A- Bear and finished off the night with ice cream. What a great time they had. Other than a mix up with the limo (turned out to be a bus shuttle type vehicle) the girls had a fantastic time!! Thank you to all involved in this event.
I took advantage of the free time and ran to West Shore Mall to shop and actually got 3 people off my list. Yippee!
Christine has her next clinic appointment this Wednesday for Irinotecan. Course #3 dose #2.
Her counts will be low. Please pray they are able to do her chemo to keep her on schedule.
Thank you Patty for the following:
Paul Harvey RIDDLE:
When asked this riddle, 80 f kindergarten kids got the answer, compared to 17 f Stanford University seniors.
What is greater than God,
More evil than the devil,
The poor have it,
The rich need it,
And if you eat it, you'll die?
Please let us know if you have the answer!
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
"What Cancer Cannot Do"
Cancer is so limited:
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.
Author Unknown
Thursday, December 2, 2004 9:51 PM CST
Hello Thursday,
Sorry for not updating sooner. These past two weeks have been very busy.
Goodbye to dear Colletta and Aunt Chris.
All our visitors are gone and we will miss them. The girls cried as each one left- but hold tight to the promise that they will return soon.
Christine had a clinic appointment this past Tuesday for chemo, Irinotecan. Course #3 dose #1.
Her counts were low but not low enough to disqualify the chemo.
She continues to get the Celebrex (200 mg) and Thalidomide (100 mg) per day at home. Along with the supplement Protocel every 4 hours.
Monday Chris had therapy and today we canceled P.T. because she was too tired. We did manage to get to the airport (stayed in the car) and the CCC for the meeting tonight. Katie stayed home so she could spend Aunt Chris’ last day in town.
This Saturday Chris will be going to the Horses for Handicapped in Seminole to ride for approx. 30 minutes. She is looking forward to it. I hope her energy level holds up so we don’t have her too exhausted. We looked into this a couple years ago but the class was full and she was put on a waiting list. After all this time I basically forgot about it until they called with an opening. I tried to prepare Chris for the extra help that would be offered to her during the class such as two walkers (one on each side of her) etc. and since she is used to the freedom at Connie and Franks- this might not appeal to her after the first time. We'll see.
Speaking of Connie and Frank, they had a new baby!!! Congratulations Sugar! Her filly was born Wednesday, Nov. 24th and she is so beautiful! Christine is quite honored to have her named “Christine’s Sugar Image”. How awesome! She is so excited to get over to Lakeland and visit her favorite Mommy and new baby! We will try to get over soon.
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
"What Cancer Cannot Do"
Cancer is so limited:
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.
Author Unknown
Tuesday, November 23, 2004 5:19 PM CST
Happy Tuesday,
We have been very busy with our visitors in town.
‘Aunt’ Colletta from Kentucky arrived safely last night. Aunt Chris has been a great help being here also. This holiday is sure to be one of the best!
Christine has a clinic appointment tomorrow for blood work check only. I think she has been doing so much better this week and hopefully won’t need blood products.
Next week she is scheduled for course #3 dose #1.
She continues to get the Celebrex (200 mg) and Thalidomide (100 mg) per day at home. Along with the supplement Protocel every 4 hours.
Today we went to Toys-R-Us and had a nice time looking at the Christmas ideas. I believe Santa is bringing us an X-Box this year and the girls are very interested in musical instruments. Oh boy, no drum sets, please!!!
This week is flying by us quickly. So much to do, so little time. Do we all feel rushed? It must be the countdown clock reminding us of how many more ‘shopping days till Christmas’!
Luckily the Thanksgiving holiday brings me back down to reality. A time when I reflect on all the wonderful things in my life. More on that later…
Enjoy this beautiful time with family and friends and we will update after clinic tomorrow.
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
One of the nurses from All Children’s Hospital (2SW) is running in the Leukemia and Lymphoma Society's Team in Training Marathon out in Arizona. She needs to raise $3,600 and is stuck at $2,000. She is running in honor of our very dear friend, Casie Snow, who passed away August 18. We desperately want to help honor Casie. No amount is too little!
If you can help, please MAKE YOUR CHECKS PAYABLE TO:
THE LEUKEMIA AND LYMPHOMA SOCIETY
MAIL THEM TO:
ETHEL GOULD
1824 SHORE DRIVE SOUTH APT 111
SOUTH PASADENA, FL 33707
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Thursday, November 18, 2004 3:44 PM CST
Click, click, click, click….
You know the sound it makes when you’re on one of those wild roller coasters at the park? Well… I’m never quite sure which is worse- the clicking sound as you are being elevated up toward the sky, anticipating, knowing what is to come… or when you reach that peak point when it’s silent and then BAM! You are thrown downward so fast you can’t catch your breath!
Exciting? Exhilarating? We pay money to ride this, right? We stand in line and gladly put ourselves through this?
Yesterday during the MRI- the machine makes such a loud “Bam- Bam- Bam” sound that it reminded me of a roller coaster ride.
Well… the initial results came in:
IMPROVEMENT!!!
This is “off the record” and I am still waiting for the radiologist and oncologist from ACH to review the scans, but at first pass by the radiologist (from the imaging center we used) they show improvement over the last scans. I am taking this news no matter what anybody else has to say! I am riding this ride and want to be thrilled and nobody can take that away from us!!!
Something is working. Chemo? Protocel? Guess which one the doctors are going to say it is.
Doesn’t matter, we will continue this fight with both. We can take a deep breath and recharge our batteries for the next round of chemo. The fight is not over!
Thank you for all your prayers!
I will update after the clinic visit tomorrow with any new info they have. Christine has her blood work drawn and I will also get a copy of the scans.
We are off to the Children’s Cancer Center with Aunt Chris. We plan on eating some turkey and spending the evening surrounded by friends and family enjoying the holidays! We have so much to be thankful for.
P.S. The Habitat for Humanity workday on Saturday has been canceled. Seems there is a construction glitch and things are on hold for the “worker-bees” until a later date. Thank you to everyone who has responded to the request. We’ll have to plan a coffee outing in place of this to catch up. XXOO, Cathy
Tues/ Wed , November 16 /17, 2004 2:03 PM CST
Wednesday Update:
I called yesterday to make the MRI appointment and it is today! At 11:30 we will run to the clinic in St. Pete for Chris to be accessed (she refuses to have a butterfly needle in her hand). Then at 3:30 we will go to the Palm Harbor imaging center and have her MRI. Please stop and say a prayer for her. Pray that the scans show improvement. We need the results to improve or they will take her off these drugs and there isn't many more options out there!
Tuesday update: Today we ran to the clinic to have Christine’s blood checked. Yesterday she was having a really bad day. Felt tired most of the day and slept a lot. Her counts are all down - but not low enough to warrant getting any blood products. We have to go back on Friday and have them checked again. If they stay down (or drop) we will stop the Celebrex and Thalidomide until they come back up.
Today is exactly the “3-year since diagnose” day. Exactly three years ago today, Christine was in Fourth grade and it was on a Friday. I picked her and Katie up from school and ran down to have a CAT scan just to rule anything out.
Chris had been vomiting periodically in the mornings before school but always said she felt fine and wanted to go to school. Sometimes late at night she complained of headaches. Of course, I had an explanation for all of this. Maybe fourth grade stress, or the 9/11 news coverage. Never in my wildest dreams would I have believed cancer!
As we sat in the lobby of the imaging center, we made a list of all the things we wanted to do that weekend. Along with movies to watch (Harry Potter was out) we were looking forward to the Fall Fun Fest. at school.
Of course that all came to a screeching halt when the Doctor came out and asked me a bunch of questions and then explained he saw a mass on Christine’s brain. How surreal this all was. The next thing I remember we were at the All Children’s Hosp. waiting for David to join us.
The MRI seemed to take hours and I met with the pastor from the hosp. All I could remember thinking was “Go away, you don’t need to be here”. I wanted him to go away because he only signified the horror of this all. The unknown was far too hard to comprehend and the pastor was too much drama for me. Too much daytime television in my past showed me that the Priest only comes in when someone is dying! For Pete’s sake, my daughter just went to school today and was a bright and bubbly athletic child! Certainly something was wrong with their diagnose.
After the MRI we waited in an emergency room cubicle until the surgeon came in and explained the options and the procedures we would be facing. Immediately Chris was admitted.
The ACH nursing staff through the weekend learned of Christine’s desire to go to the Fall Fun Fest and granted her a “day pass” to leave for a few hours on Sunday. Surgery was scheduled for Monday and they knew how bad we needed this time together as a family.
Wow, did things change. I am grateful now for my ignorance of what was to come. If we had any time to realize how much rehab, treatment and uncertainties we would be faced with, I never could have stood it all. Thank God, family, friends and prayer held us up! Each day is a new awakening. We are looking at a gift that God has given us. She is ours to love, hold and cherish until he say’s it’s His turn. Please, Lord, give us many years.
Thank you for following Christine’s journey when it is so easy to turn away. You are here today because you love, care and pray for Christine. Thank you!
Sunday:
Hello,
Today was the First Lutheran Fall Festival. It turned out great!
A very special Thank You to Jane Snow. You helped out tremendously with our ‘Christine’s Creations’ booth. From the set up time until the end- you were there helping. This was very generous of your time and energy. Thank you! Please keep us posted on when you are doing the Bone Marrow Drive in honor of Casie so we can help!
The best part of the day was seeing everyone. It was nice to see some of the gals I worked with from Sunstar and a wonderful man named Mr. Wooten and his wife. He was the first pilot we had with Angel Flight Services who flew Christine and I to the Duke Brain Tumor Center earlier this year. We have truly been blessed with the people we have in our lives. From Connie and Frank there with their horses to Christopher Oz and his magic show to the field of people I saw today and can look around and find a hundred people to hug and call friend! God is Good!!!
Medically: Chris seems to be holding her own.
This week at a glance:
Monday- Christine has physical therapy.
Katie’s Brownie troop meets at the Harborview Center in Clearwater to decorate their tree. Each year the troop decorates a tree to be part of the annual Festival of Trees program.
Tuesday- Pastor O’Brien from First Lutheran Church will come by for lesson #4 preparing Chris for confirmation and communion.
Wednesday- Clinic/ blood work only. No chemo. (Hopefully no blood or platelets are needed).
Thursday- Aunt Chris arrives from Michigan yeah!!
Physical therapy from 2-3.
We will then head over to the Children’s Cancer Center for their annual Thanksgiving Dinner. This particular meeting there will be a guest speaker discussing ‘cancer clusters’. A general discussion of what cancer clusters are, how they are investigated, as well as the findings of some relevant publicized studies, will be presented. We have all questioned the higher incidence of disease among certain populations or environments, so I'm sure this discussion will prove to be informative.
Saturday I hope to join a group of ladies from our church who are working with a Habitat for Humanity. We have a single mom who was approved for a house (which is no easy task!) and needs a total of approx. 400 volunteer hours to complete. Please call me if this sounds like something you are interested in doing. I do not believe we need to have any power tools to do this. Oh darn!!!
Thalomid Update: No problems noted. We have followed instructions on the label to give at bedtime. So far, so good.
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
One of the nurses from All Children’s Hospital (2SW) is running in the Leukemia and Lymphoma Society's Team in Training Marathon out in Arizona. She needs to raise $3,600 and is stuck at $2,000. She is running in honor of our very dear friend, Casie Snow, who passed away August 18. We desperately want to help honor Casie. No amount is too little!
If you can help, please MAKE YOUR CHECKS PAYABLE TO:
THE LEUKEMIA AND LYMPHOMA SOCIETY
MAIL THEM TO:
ETHEL GOULD
1824 SHORE DRIVE SOUTH APT 111
SOUTH PASADENA, FL 33707
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 – 1893)
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
May you have an awesome day. God’s Blessings, Cathy
Wednesday, November 10, 2004 11:30 PM CST
Clinic Day/ Chemo cycle #2 round #4
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
Finger Poke:
WBC 4.1 (up)
HGB 11.7 (up)
PLT 71 (up)
ANC 1300 (up)
Port access blood:
WBC 3.5
HGB 9.8
PLT 45
ANC 1200
Hello,
Today was clinic day for dose # 4 of Irenotecan. Platelets qualify. Oops, no they don’t, yes they do!
After all was done and said Chris got the chemo.
Now she has a two-week break. Yeah! In time for the holidays and special visitors coming into town! Pray! After the break she will have another MRI to see what affect this is having on the tumors. Pray really hard!
Medically: Chris seems to be holding her own. Funny how everyday becomes a miracle- nothing can be taken for granted.
Thalomid Update: We have it! I’m telling’ ya…you could buy heroin on the street (i'm guessing), or you could fly to some other country and that would be easier than getting this drug. I won’t bore you with all the details; frankly I am so tired of dealing with it I am letting it rest. Next month it should be smoother since we already are “trained”.
Chris will start it tomorrow AM. I don’t like to introduce new meds at night when given the choice.
Are you confused yet about the double blood work results? Well, so was I. When I asked why we get such a variation of numbers depending on where the blood is drawn, that I am a little concerned. Now I know the capillary and artery blood are going to give different results but based on these numbers we gauge whether or not a child is able to receive their chemo or not. This is bothering me. How many patients are sent away or given chemo with such a variance of numbers? I asked about the integrity of the machine and if this was typical of the results fluctuating like this. The poor nurse, Jen, looked at me and said she didn’t know of it ever doing this before and perhaps it was just Christine. Well, I’m not surprised! Christine is the mystery girl all along. Aside from that, I am thinking soon we should draw labs from another facility (machine) and compare them to the one at the clinic.
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. It is located at 1644 Nursery Road in Clearwater. Between Keene and Lake Ave. from 12- 4pm.
Christine is planning on having a table set up with her jewelry. So stop by and say hello!
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Tuesday, November 9, 2004 10:45 PM CST
What a great visit we had with Grandma!
Started out last Thursday. We went to P.T. and the Children’s Cancer Center.
On Friday we kept Katie home from school and headed over to paint pottery and enjoyed lunch and ice cream. We then visited Mr. Pezutti at Cousin Corp. for beads. Thank you Mark for all your help! Chris wants me to tell you Mark that “You Rock”!!!
Saturday we went down to Treasure Island Fun Center for an afternoon of games and fun.
Sunday the girls went with Dad and Grandma to the International Mall for some shopping while I was being pampered by the CCC “Mothers Appreciation Day” outing!
This was a day at the salon in which a dozen or so women were treated to a hair make over, manicure, pedicure and back massages! What an awesome time. Each time one of the ladies appeared sporting her new hair color or style it was amazing to see them “glow”. This was so much fun to be a part of. Sharon Yerrid and her husband Steve, work very closely with the Children’s Cancer Center hosted the event. I mean to tell ‘ya, a champagne brunch with all the details! It was quite the day to remember!
Monday we ran errands and made a trip to Enterprise Art (we had to show Grandma where we hang out to buy beads). We went out to dinner and had a wonderful meal.
Today Pastor O’Brien visited again and they covered Lesson #2.
Grandma went back to Michigan but not before we stopped for Ice cream of course! Grandma totally spoiled these girls! They had a wonderful time.
Tomorrow (Wednesday) is clinic day. Hopefully, Christine’s blood work looks good enough so she can get her 4th dose. Then she will have a two-week break over the holiday.
So much has been going on with the bracelets and jewelry Chris is working on. I can’t wait to sell some at the festival so we can have more room to make more!!
I still am in a rental car while my van is being fixed. Remember on October 30th I had the flat tire? Well it did some damage to the side of the van that really needed to be fixed. It is a very old van (’92) and it runs pretty good so I want to keep it running and looking somewhat nice, well… I received a call from the repair shop saying the cost to fix it exceeded the value of the van. Ha! If you saw my van you’d laugh! It’s true. But as the lady at the repair shop emphasized to the insurance company how important it was to repair etc… they authorized it. It won’t be until next Monday that I get my old baby back. Meanwhile I am being spoiled driving a brand new van with 144 miles on it!
The dilemma on getting the new drug Thalomid continues. I found out it is avail through a local pharmacy down the street and ran and got the RX on Monday and quickly delivered it as they told me I only had 24 hours to fill the Rx as described by the “rules”. So I quickly got it and delivered it on Monday. Anyway, now the pharmacy can’t fill it because the insurance company has denied it. They see it in their computer as already ordered by the pharmacy in Tampa. Long story… We should have it straightened out by tomorrow.
Medically speaking Christine continues to do well. I don’t know for how long her symptoms will be held at bay. This could be the drug combination we are looking for. Otherwise time will tell if this is working or not. Pray hard for comfort and peace and healing during such a difficult time. I know we make everyday count!
In the meantime we are making more jewelry for the Fall Fun Fest at school. Whew… Never a dull moment.
May you have an awesome day. God’s Blessings, Cathy
Wednesday, November 3, 2004 4:04 PM CST
Clinic Day/ Chemo cycle #2 round #4 (Not given)
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
WBC 2.4 (1.0 down from last week)
HGB 10.6
PLT 47
ANC 600 (-700 from last week)
Hello,
Today was clinic day for dose # 4 of Irenotecan. Looking at her low platelet counts; the doctor said “no” to chemo today. We suspected this would happen. Next week they will rebound and she will get the 4th dose and then a two-week break. Pray! After the break she will have another MRI to see what affect this is having on the tumors.
Chemo is such a necessary evil at this time. Every dose is critical but also hard on blood and marrow. I look at her and say “wow- after 3 years she is still going so strong” but I know it has been so difficult for her.
Medically speaking Chris seems to be holding her own. I watch for all the symptoms they describe are typical for brain tumor activity and do not notice any changes. Such things as vision changes, vomiting, headaches, (additional) loss of balance etc. and so far all seems to be stable. Funny how everyday becomes a miracle- nothing can be taken for granted.
This month marks the 3-year anniversary of her diagnose. Later in the month I will walk down memory lane… stay tuned. Of course, if you have any stories to share or special snap shots in time, please let us know.
Thalomid Update: New drug we are still waiting on!
Today at clinic we were told that Christine has been reclassified in the drug mfg. database and therefore Christine will not have to take a pregnancy test every 28 days. So now the process starts over again doing telephone surveys etc. to get the drug. Hopefully by tomorrow or Friday the drug can be picked up!
Tomorrow we are picking Grandma up at the airport for a short visit! We are all so excited. We will miss Grandpa this visit but they both promise to come back to Florida after the first of the year for their annual visit!!!
This week at a glance:
Monday- Physical therapy – cancelled. Sorry Gloria! Chris was extremely tired. Long story.
Tuesday- Pastor O’Brien from First Lutheran Church came by for lesson #2 preparing Chris for confirmation and communion.
Wednesday- Clinic day. It was great running into Alicia (Billy’s mom). She is also a fellow “beader” and had some ideas and tips to share with us! Thanks Alicia! She is also the gal who made the Ladybug bracelet that Katia wears and now sells on her site. Check it out, it’s adorable! I wish I knew how to put others link sites in the Caringbridge site but I am not that knowledgeable about this tech stuff. Any hints out there?
Also, I have discovered that if I type my messages/updates in a word document and then copy/ paste when I’m done- I can have time to walk away and any distractions (imagine that!) don’t cause me to tie up the computer until I’m done since you are unable to save as you go. Also, if you are a Caringbridge user you know if you have any power blurps at all- you lose all data you put in. Very frustrating! Perhaps that is why my messages seem to get longer and longer…
Thursday- Grandma arrives! P.T. And then head over to the Children’s Cancer Center for the meeting/ dinner/ social time.
Friday- Saturday- Sunday-
Busy, busy, busy… However much fun we can pack into Grandma’s trip!
As always we play each day as it comes. I worry about everything, yet remind myself to stay positive! We always have our faith and hope. Things could change in a minute but we refuse to let it take control of our good days and precious time together.
As I look through the week, I reflect on the many people who have made our journey all the more blessed: Our family, Rhonda, Sharon, Lynn, FLS, the gals from the CCC: Orlaida, Nikki, Robin, Sara, Mary Ann, Sharin…. And so many others that have touched our lives. As you can see, we are blessed with the greatest of gifts: Hope, support, laughter and above all, Love.
Reminders:
The Children’s Cancer Center Holiday Cards are out at a Publix near you!
Please plan on purchasing the beautiful cards/artwork done by the local Bay area kids and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. It is located at 1644 Nursery Road in Clearwater. Between Keene and Lake Ave. from 12- 4pm.
Christine is planning on having a table set up with her jewelry. So stop by and say hello!
Update: 11/03
Way to go Bailee and Robin! They are being released from the hospital today and going over to the Ronald Mc Donald house (in New York) until full discharge!
Bailee received her bone marrow transplant October 1st. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the 100 ew marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Thank you Sheri W. for the following:
To realize
The value of a sister
Ask someone who doesn't have one.
To realize
The value of ten years:
Ask a newly divorced couple.
To realize
The value of four years:
Ask a graduate.
To realize
The value of one year:
Ask a student who has failed a final exam.
To realize
The value of nine months:
Ask a mother who gave birth to a stillborn.
To realize
The value of one month:
Ask a mother who has given birth to a premature baby.
To realize
The value of one week:
Ask an editor of a weekly newspaper.
To realize
The value of one hour:
Ask the lovers who are waiting to Meet.
To realize
The value of one minute:
Ask a person who has missed the train, bus or plane.
To realize
The value of one-second:
Ask a person who has survived an accident.
To realize
The value of one millisecond:
Ask the person who has won a silver medal in the Olympics
Time waits for no one.
Treasure every moment you have.
You will treasure it even more when
you can share it with someone special.
To realize the value of a friend:
Lose one.
The origin of this letter is unknown,
But it brings good luck to everyone who passes it on.
Peace love and prosperity to all
Monday, November 1, 2004 6:22 AM CST
What an awesome weekend!
Started out on Friday night. Katie went to a Halloween party and had a blast!
Saturday we headed over to Connie and Franks for the KID-O-WEEN party. We had an amazing time!
We took both vehicles because of the quantity of kids and coolers etc.
My van had a flat tire on the Howard Franklin Bridge but that quickly got changed and we were back on the road in no time.
We arrived and the party was hopping! The horses were saddled and the BBQ was hot. The girls rode horses and the hayride was so fun! I have pictures and will post tonight.
There were gospel singers set up with their equipment and they sounded fantastic! The food, the kids, the entire night was incredible! Thank you Connie and Frank. (The haunted house and horse trailer with the water balloons were a hoot!) How creative! You guys did so much. THANK YOU!
Christine was so charged up on Saturday. She woke very early wanting to start her day. By 2 am she got to bed and boy, did she sleep in on Sunday! I have so much more to tell… but want to post this quickly.
Today Chris has P.T. and homework.
I will set up the Publix Christmas card displays for the Children’s Cancer Center tonight. Tomorrow we have Pastor O’Brien coming by for Christine’s instruction on Confirmation and Communion.
Wednesday is Christine’s clinic day for #4 chemo. I seriously doubt she will qualify this week. We’ll see. PRAY!
Thursday we have Grandma Sue from Michigan flying in for a visit! The kids are so excited! We have such an awesome time when she is here. We love you, Grandma!
In the meantime we are making more jewelry for the Fall Fun Fest at school. Whew… Never a dull moment.
Will post pictures tonight!
May you have an awesome day. God’s Blessings, Cathy
Thursday, October 28, 2004 0:03 AM CDT
Clinic Day/ Chemo cycle #2 round #3
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
WBC 3.4 (1.8 up from last week)
HGB 15.2 (+8.7)
PLT 54 (+24)
ANC 1300 (+500)
Hi,
Today was clinic day. Yes, my baby had to take a pregnancy test. Why on earth you may ask yourself? Well, according to this new drug, Thalomid, it requires all female patients to obtain a pregnancy test (every 28 days) before an RX can be written. After the results show negative they can dispense. Dr. Grana tried to explain the logic behind not needing this process but since Christine is 13yo it shows a red flag in their computer and they cannot make any exceptions. So a simple urine sample was sent to the lab. We are still waiting for this drug. Chris did mention to the doctor she wanted to dress up for Halloween as a pregnant lady next time! Oh boy!
There was the usual question on whether or not the platelets were high enough to qualify for her chemo. I told our nurse that it was explained to me at the beginning of this drug that the platelets needed to be at 50 to make her eligible for Irenotecan. And since they were “54” we were going to get the chemo today to stay on track as possible. She talked to Dr. Grana and the drug was ordered and given. Whew… why is this a question each time?
This week at a glance:
Monday- Physical therapy, thank you Gloria for always motivating Chris!
Tuesday- Pastor O’Brien from First Lutheran Church came by and started preparing Chris for confirmation and communion. Typically this is an 8th grade milestone in the Lutheran school, but since Chris is homebound he felt it was appropriate timing for her to prepare for this sacrament. Very interesting workbook and I feel Christine is ready. More importantly she feels she’s ready.
Wednesday- Clinic day. Mom’s night out with friends from the Cancer Center. Yeah! We went to Rattlefish grill in Tampa and had a very nice time!
Thursday- P.T. And then head over to the Children’s Cancer Center to pick up the Christmas cards and stands for the Publix stores.
Friday- Katie has a Halloween party to go to after school. It will be a blast with her friends. She has asked me to only stay a “short time and then bug out”. When I asked her why she didn’t want me to stay the whole time she replied she wanted to feel like she was at a “BIG person party” and that would not require her mom to be present! Gee, my baby is growing too fast!
Pick up goodies for Saturday.
Saturday- Lakeland bound! Halloween party time! Horses, hayride, candy, fun galore!
Next month I will walk down memory lane again when we hit the 3-year mark of her diagnose.
Please share any memories of this journey with us. If you have a particular time or event in which Chris was part of and you would like to share- I would greatly appreciate it.
It is amazing to look at pictures of different phases and travels during her treatment and recall all that she has gone through and still continues to thrive and smile and be such a wonderful and inspiring young lady.
As always we play each day as it comes. I worry about everything, yet remind myself to stay positive! We always have our faith and hope. Things could change in a minute but we refuse to let it take control of our good days and precious time together.
As I look through the week, I reflect on the many people who have made our journey all the more blessed: Our family, Rhonda, Sharon, Lynn, FLS, the gals from the CCC: Orlaida, Nikki, Robin, Sara, Mary Ann, Sharin…. And so many others that have touched our lives. As you can see, we are blessed with the greatest of gifts: Hope, support, laughter and above all, Love.
Reminders:
The Children’s Cancer Center Holiday Cards are coming out soon to a Publix near you!
I will be setting up the Missouri Ave and West Bay store at the end of the month. It doesn’t matter where you buy them – just any Publix in the Bay area. Please plan on purchasing the beautiful cards/artwork (done by the local Bay Area kids) and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So stop by and say hello!
Update: 10/27
Way to go Bailee on your progress!
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Monday, October 25, 2004 11:43 PM CDT
Hello,
Last update I wrote was that Christine needed a transfusion. So we camped at the clinic last Thursday and she received two units. After she got the blood we went over to the Children’s Cancer Center for some food, fun and fellowship.
Some kids were in costume but the girls didn’t want to dress up. That quickly changed over the weekend when we went to Party City to get costumes. Apparently, they got “bit” by the Halloween spirit, and wanted to dress up.
Katie is going to be Spiderwoman and Chris is going to be a butterfly. This took a considerable amount of time and planning. You see- it’s got to be a costume where they can bob for apples and ride horses in. Whew… so off to the fabric store we went and we found the material for Katie’s skirt and her spider veil. Christine was easy because she found the wings at the party store and will improvise with face make up and a sparkly hat. All of this is easy to put on and take off when the activities wind down.
You would think the girls were getting ready for Christmas by the way they are acting. This Saturday we are going over to the Dillanders for a Halloween Party and they are so excited! I am looking forward to the kids running around in costume and playing games and eating S’Mores.
Friday night Katie has a party after school that she is really excited about too! Wow, three full days of costumes and candy!
My October walk down Memory Lane:
Two years ago on Halloween, Christine was “confined” in a hospital room because of meningitis after her Laminectomy. This month also marks two years since I have worked. I don’t miss working but I do miss the people!
So two short years ago we were told her cancer had spread to her C-spine and lower spine. She was immediately put on high dose steroids and removed from her protocol treatment plan (after approx. 8 months of every three-week admits for chemo). This is why we agreed to do the Laminectomy for a pathology report. Those same lesions don’t appear on the scans today. Praise God!
Oops, I almost forgot that October ‘02 marks the date we received Max, our golden retriever from Sharon. He sure became an instant family member! What an awesome dog.
Last October Christine dressed up as a French Maid and paraded around with her wig and new figure. Since gaining approx. 30 lbs on steroids she was finally close to her start weight and was feeling good about that. I on the other hand watched her appetite drop to nothing and was getting a little nervous.
Next month I will walk down memory lane again when we hit the 3-year mark of her diagnose.
Please share any remembrances of this journey with us. If you have a particular time or event in which Chris was part of and you would like to share I would greatly appreciate it. It is sometimes amazing to me to look at pictures of certain times during her treatment and recall all that she has gone through and still continues to thrive and smile and be such a wonderful and inspiring young lady.
The other day we talked about the fishing derby coming up. It was two years ago we went and Chris was just released from the hospital and was confined to the wheelchair and was heavy at the time. When I asked her if she wanted to go again this year, she replied “No, last time I was there I didn’t have much fun”. She further went on to tell me she was a “Fat girl with a fishing pole”!!! She cracks me up!
I think this year she may want to go just to revisit the Don Caesar and see everyone. That is in November so she could change her mind again.
As always we play each day as it comes. I worry about everything, yet remind myself to stay positive! We always have our faith and hope. Things could change in a minute but we refuse to let it take control of our good days and precious time together.
This past Sunday we met Erin and her sister Katie to see the Hilary Duff movie “Raise your Voice”. It was so nice to see both of the girls again. Erin- you guys Rock!
Still in progress:
We talked about the new drug for Chris: Thalomid (thalidomide). The Rx was written and we did do a phone survey. This Wednesday when we go to clinic again if Christine’s counts are high enough we can start her on it.
As I look through the week, I reflect on the many people who have made our journey all the more blessed: Our family, Rhonda, Sharon, Lynn, FLS, the gals from the CCC: Orlaida, Nikki, Robin, Sara, Mary Ann, Sharin…. And so many others that have touched our lives. As you can see, we are blessed with the greatest of gifts: Hope, support, laughter and above all, Love.
Reminders:
The Children’s Cancer Center Holiday Cards are coming out soon to a Publix near you!
I will be setting up the Missouri Ave and West Bay store at the end of the month. It doesn’t matter where you buy them – just any Publix in the Bay area. Please plan on purchasing the beautiful cards/artwork (done by the local Bay Area kids) and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So stop by and say hello!
Update: 10/18
WBC: 1.0 Way to go Bailee!
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Wednesday, October 20, 2004 6:06 PM CDT
Clinic Day/ Chemo cycle #2 round #3 (Not given) Check out new photos of Christine's mural!
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
WBC 1.5 (-.8 down from last week)
HGB 6.9 (-1.3)
PLT 30 (-31)
ANC 700 (Same)
Today was clinic day for chemo #3 but Christine’s counts did not qualify. In fact, the hemoglobin was so low that we have to return tomorrow for a blood transfusion. It was too late to start the process because it takes approx. 4 hours and the clinic closes at 6:00 pm.
After Dr. Grana examined Chris, she said it wasn’t really that urgent that we go to the hospital (across the street) to get the blood. (I remember the last time we did this and it turned into a 10-hour process and it was midnight before the blood was done). Oh well, we will return tomorrow and get some red blood pumping through her and she’ll have rosy cheeks for a while.
Still in progress:
We talked about the new drug for Chris: Thalomid (thalidomide). The Rx was written and apparently we need to do a phone survey, fax the script along with the paperwork signing we understand the dangers of getting pregnant while on this drug... A lot of hoops to jump through as a precautionary measure.
Tomorrow night the CCC is having their usual meeting, only this time the kids will be in costume (and I suspect the parents will also join in the fun!).
As I look through the week, I reflect on the many people who have made our journey all the more blessed: Our family, Rhonda, Sharon, Lynn, FLS, the gals from the CCC: Orlaida, Nikki, Robin, Sara, Mary Ann, Sharin…. And so many others that have touched our lives. As you can see, we are blessed with the greatest of gifts: Hope, support, laughter and above all, Love.
Reminders:
The Children’s Cancer Center Holiday Cards are coming out soon to a Publix near you!
I will be setting up the Missouri Ave and West Bay store at the end of the month. It doesn’t matter where you buy them – just any Publix in the Bay area. Please plan on purchasing the beautiful cards/artwork (done by the local Bay Area kids) and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So stop by and say hello!
Update: 10/20
WBC: 2.1 and climbing! Way to go Bailee!
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Tuesday, October 19, 2004 7:59 AM CDT
This week has been especially difficult. We lost two very brave children to this disease.
I never met R.J. but know of him through his friends at the Children’s Cancer Center. He must be a very special young man by the lives he touched.
Olivia C. had battled Chondroblastic Osteosarcoma since May 2003. She had just turned 16 on September 9th. Olivia fought a very hard battle and she did this with such grace and compassion. I met Olivia and her family in August. I was so impressed by her poetry and warm smile. On Saturday, Heaven received another beautiful angel.
Fly free sweet Olivia. You will always be loved and remembered.
All the things I want to share with you- but they seem so unimportant after this news.
We pray for their family’s comfort. We pray for continued hope and healing for Christine and all the other kids that continue to fight this fight.
Today both Christine and Kate get their flu shot.
Tomorrow is clinic day for chemo (if Chris’ counts qualify). I am not sure if her blood will cooperate this week. She has been hit twice now in two weeks with Irenotecan. Along with the 200 mg of Celebrex she takes at home.
Oh, I almost forgot the Protocel every 4 hours:)
There was a question on whether or not Celebrex was “safe” to take since it is the same family of drug as Vioxx. I asked Dr. Barbosa about this and mentioned that Dr. Tebbi over in Tampa is pulling kids off of it. He apparently thinks it is a good choice and wants to continue to use this drug. So we will keep Chris on it until further info. is found.
We talked about the new drug for Chris: Thalomid (thalidomide). The Rx was written and apparently we need to do a phone survey, fax the script along with the paperwork signing we understand the dangers of getting pregnant while on this drug... A lot of hoops to jump through as a precautionary measure.
We had Dawn, the artist, over on Friday to do the mural on Christine’s bedroom wall. This was a birthday gift she received. Thank you Sara and Molly! We are so blessed to have you in our lives. We love you guys! The mural is awesome!
I took pictures and will have David post them since I am not sure how to do the photos yet.
This Thursday night the CCC is having their usual meeting, only this time the kids will be in costume (and I suspect the parents will also join in the fun!).
As I look through the week, I reflect on the many people who have made our journey all the more blessed: Our family, Rhonda, Sharon, Lynn, Connie, FLS, the gals from the CCC: Orlaida, Nikki, Robin, Sara, Mary Ann, Sharin…. And so many others that have touched our lives. As you can see, we are blessed with the greatest of gifts: Hope, support, laughter and above all, Love.
Reminders:
The Children’s Cancer Center Holiday Cards are coming out soon to a Publix near you!
I will be setting up the Missouri Ave and West Bay store at the end of the month. It doesn’t matter where you buy them – just any Publix in the Bay area. Please plan on purchasing the beautiful cards/artwork (done by the local Bay Area kids) and it supports the CCC. How cool is that?
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So stop by and say hello!
Update: 10/18
WBC: 1.0 Way to go Bailee!
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Friday, October 15, 2004 4:01 PM CDT
Thursday: Clinic Day/ Chemo cycle #2 round #2
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
WBC 2.3 (-.8 down from last week)
HGB 8.2 (-1.1)
PLT 61 (-43)
ANC 700 (-500)
Today we had a clinic appt. for chemo. It was questionable whether or not she was going to qualify because of her low ANC’s. They would like to see it at least 750. Dr. Grana gave the O.K. So 4 hours later we were done and left the clinic. Yes, you ask why it takes 4 hours to infuse a drug that infuses over 55 minutes? Yikes, sometimes it just falls that way. We get lucky some days – some days it is painfully slow. All of the nursing staff is wonderful; it’s just the bench seats in the exam rooms that have to go. Apparently, all of the chairs have been removed and every exam room has VERY hard park benches. Ouch!
Note to Miss Emily: it’s ‘write letter time’ to the clinic office manager/ decorator. Call me. Ha Ha.
We talked about the new drug for Chris: Thalomid (thalidomide). The Rx was written and I need to get from the pharmacy and take with us to the next doctor’s visit. If Christine’s counts are high enough we can give it to her orally in the clinic. If not, we wait until her counts come back up (a week or two).
After seeing today’s drop in blood counts, I suspect she won’t even qualify for her regular scheduled Irinotecan. We can only hope they bounce back.
I realize I haven’t updated in a few days and I apologize. It’s been very busy here. When we’re not running over to Tampa we’re dropping off for Brownies or birthday parties, etc. It’s nice to have a busy routine though. In the evenings, Christine and I have been making bracelets and necklaces. We have so much fun staying up late and working together. She is my craft girl!
Tomorrow is exciting! We have an artist coming over to do a mural on Christine’s bedroom wall. This was a birthday gift she received. Tomorrow’s the BIG DAY! We will look at some of her sketches and decide. She already has an idea of what Chris would like, but since it’s been difficult for Chris to commit to a theme, we think we have a solution. If she does a scene of a forest or tree lined road, then Chris would be free to change out the decals of horses and/ or fairies as her taste changes. We’ll know more tomorrow! I will take pictures and post when she’s done!
Have a blessed day!
Reminder:
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So stop by and say hello!
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Wednesday, October 6, 2004 3:52 PM CDT
Friday: Clinic Day/ Chemo cycle #2 round #1
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
WBC: 3.1
HGB: 9.3
PLT: 104
ANC: 1200
On Wednesday when we received the results from Christine’s MRI, it was almost as if you could see the stress leaving her body. As much as I would love to shelter her from all the realities of this disease, I find it is impossible to shield her from all its effects.
I realize that she is at a tender age of 13 when she is aware of the facts, yet still wants to believe in the Tooth Fairy and Santa. Of course, as a parent I want her to live as sheltered and unscathed by all of this, but that simply is not the case.
Her fragile human body and appearance does not allow us for one minute to “escape” this reality. As chemo takes its toll we are seeing more hair loss and less appetite.
Chris continues to do physical therapy twice a week and shows improvement, but we are faced with the possibility of one day getting a wheelchair or walker for a more permanent mobility option should she not regain enough of her balance and strength.
School is the biggest driving force in all this. Sooner or later we will look at how we can reintroduce her into the school system. Her immune system will be stronger and the only thing keeping her from attending is the inability to walk without assistance. Her energy level is very low and the window of opportunity to be at her best is small- but that can be worked on. We could always shorten her days by having her attend only a few classes. I think socially she needs this outlet. She needs to be interacting with her peers and staying involved.
Certain things I cannot control. Boy… can you believe I said that? Three years ago I controlled everything. Or, so I thought. Now I sit back and breathe. God will be there. I take great comfort in this. One hundred years from now it won’t matter. It will matter that we served Him and made Him proud. It’s that simple and yet that difficult!
Lots of new things coming up that have Christine very excited.
Halloween weekend we are planning on a trip over to Lakeland to visit Connie and Frank. Yeah! Happy dance. On that Saturday, Connie and Christine are planning to do a hayride, bobbing for apples and ride horses. This is the only thing Chris wants to talk about lately! Boy, is she excited.
The First Lutheran Fall Fun Fest is Sunday, Nov. 14th. Christine is planning on having a table set up with her jewelry. So far she has the “original” blue bracelet from the fundraiser and a few Bucs and Lightening bracelets also. Oh, I almost forgot- she has a green and white FLS bracelets to show your support of the school! Go Flames!
In addition to bracelets we have necklaces and earrings. Plan on stopping by and saying “Hi” on this day. It’s always a fun time. They may also have Connie and Frank with their horses out there to ride. So many cool things! I also heard rumor to the effect that the magician who was at Christine’s fundraiser will be there! Can you believe it!?! Christopher Oz was awesome and if you missed him in July, you won’t want to miss him again! Stay tuned for more exciting updates as I get them from the group working on this event.
A special friend, Bailee, received her bone marrow transplant. She is at Sloan Kettering in New York. Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
MRI Update:
"Mixed Response"
I heard back from Dr. Grana on the results of Christine's scans.
Three regions of the brain that we are watching:
One looks the same. (Left region)
One looks worse. (cerebellum)
One looks better. (Right region)
What a mystery this gal is, I tell 'ya!
After several questions and some discussion on her previous treatment drugs:
We are at the point where she will continue the Phase 2 study drug, Irentecan, and start back up on the Celebrex. This is one of the drugs Christine had before and we stopped because of the allergic reaction (that turned out to be the sunscreen). We will also continue the Protocel every 4 hours.
All in all, I am pleased with the results. As Dr. Grana said this is the better of the scans within the last 6 months. Wonders never cease and either do miracles. Please continue to pray!!!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Friday, October 1, 2004 9:31 PM CDT
9:00pm Tuesday update:
Still no final word on the scans.
I did speak to Dr. Grana last night around 6pm. She called to say the tumors appeared to be progressing.
I asked if this was compared to the July scans and she replied "no, the March scans".
I explained that Dr. Barbosa was to have received the scans on CD from Duke in July. She called me back and said yes, they had arrived and she would have the radiologist look at them and compare scans this morning. Still waiting.
During our conversation, I mentioned my intentions were to carry on with chemo, since Chris tolerates it well. She agreed.
I made an appt. for chemo on Friday.
Today Chris had a tooth pulled! Hurray!
Now, this is the baby tooth that needed to come out 3 years ago and since it would have required a shot to numb the area - she refused and I never pushed it. She has enough to handle. Well, lately it has been bothering her and today they pulled it without any shots. I'm so proud of her!
I'll update asap when I hear something. Cathy
5:00 pm MONDAY UPDATE:
Still no word yet on the scan results. I left a message for the office to call me with the radiologist report.
I did talk to the nurse regarding a dentist appt. tomorrow for Chris to have a tooth pulled. All kids on treatment have to have an antibiotic before/after any procedure- so they called me in a Rx.
At the time I had the nurse on the line, I explained how we were waiting for scan results and she said they put a call into radiology to get a quick read. Anyway, I went on to tell her I needed to make an appointment for Chris and she is due the chemo this week. I requested that whatever the scans show - we are still proceeding with the drug. Regardless of the results we are not stopping. Will post as I hear more.
Friday:
Hurricane Jeanne, MRI
Yes, we lost power… for 5 days! Sunday morning the winds were blowing like crazy and the girls and I watched most of it through the front window. I didn’t feel too threatened by the winds. It was enough to make the trees bend slightly, but nothing that raised my fears to move away from the windows.
While we were watching out the window, I noticed a bright light in the tree across the street from us. Since the power was out, I knew it couldn’t be a streetlight shining through the braches. It continued to “grow” along the branch and then I knew it was a fire. A very weird feeling. I ran to the phone and dialed 911. I relayed what I saw and the operator asked me if there were flames or smoke. I replied that it had fallen in the neighbor’s back yard and I couldn’t see it anymore. The rain was probably putting it out- but I wanted to report it anyway since the neighbor was not home. The firemen came out a little later when the winds were down a bit. They checked it out and placed yellow tape around the fence to keep folks out. It turned out to be a branch that was in a power line.
Sunday we camped here with a Coleman stove and lantern. The winds were still strong so it created a nice breeze and we tolerated the power being out.
Monday was a different story. Christine vomited dark clear yellow fluid in the morning. Afterwards she felt fine and we moved about our day. Kate was home from school so we just hung around without power playing games and doing things the “old fashioned” way. At night it was very warm with no breeze, so we slept terrible. Everytime I called the power outage 'phone line', their automated answering system gave no estimated time of power restoration. That's bad news.
Tuesday I called the Delux Motel in Clearwater. I know it is owned/operated by the folks that are associated with First Lutheran Church and School. When I called I introduced myself and Judy knew my name and asked if I was Christine’s mom. Small world. I asked if they had any rooms avail. Judy called me back and said there was nothing avail., but there was a place we could stay. She set us up in a tri-plex that was empty of seasonal folks. It was 10 minutes away from our house and overlooked a lake. It had AIR, refrigerator and two bedrooms. Did I mention Air?!
Judy and Lillian, you are amazing!
Thank you very, very much to Delbert and Kay Gangelhoff. They were very generous to offer us a place to stay while we were without power. Here is a family that trusted us with their home- not knowing us- only by our circumstances- had opened up their hearts and their home to us. Thank you!
Thursday we raced home after finding out the power was restored.
We took the entire day moving in/out and cleaning up. Needless to say, we threw two freezers worth of food out. Oh well, they needed to be cleaned. Luckily, the two small ½ rolls of Thin Mint Cookies were found. Yes, we still have Girl Scout cookies hidden- until unearthed on Thursday!
O.K. Friday. MRI day.
I don’t know what to say. I have no formal results until the radiologist reports to the doctor on Monday.
I think as we approach the three-year mark of this journey, I know the “signs” that I get from the MRI folks.
I will try to remain positive.
I cry, I pray, there is so little more I can do.
I was told at the end of the scan that the doctor would call me on Monday. I said that I requested that the group on the Tumor Board meet and discuss the findings before anyone made a decision. I went on to say that I didn’t want decisions made by oncologists/ surgeons/ etc. without consensus as to what they were looking at.
He replied that I would get a call on Monday. The chills ran through my spine.
That eerie feeling that I get before the lightening strikes or when in a dark parking lot when you sense something is just not right.
I have copies (on CD) of tonight’s MRI. I have not put them in yet. I am not a professional and I don’t know if I would recognize something if I saw it. I am afraid to look at them. But I know that I will end up reviewing them before the night is over.
Please pray they are better (or even the same as the last scan!)
Ask everyone you know to pray for her! Thank you.
A special friend, Bailee, received her bone marrow transplant today. Now she has 2 birthdays! She is at Sloan Kettering in New York with her family and her brother who is the donor! Yes, Michael, you are a hero! Pray she recovers and her body accepts the new marrow. We miss you Bailee, hang tough sweetie! We are praying and sending hugs your way.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Saturday, September 25, 2004 5:24 PM CDT
Happy Saturday,
Wanted to update before we lost power. Yes, another visitor to Florida by the name of Jeanne. Winds and rain are picking up in our area as she enters land over on the East coast. We are watching her path closely and it appears she will leave some evidence of her presence. Don’t know how much, but something I’m sure.
Today the girls and I went over to the Children’s Cancer Center for the “Big Buddy” meeting. This is the time they introduce siblings of cancer patients with second year med student from USF. The idea is to match them up so they can go on field trips and outings. It gives the sibling some special attention that they sometimes lack when their brother or sister has cancer and gets so much attention. Very cool!
Katie met Jenn today and really likes her! I think they’re going to have a blast together this year! Jenn happens to be very good friends with Kim, Christine’s Big Buddy from last year. Small world. I’m sure they will double up for certain events!
Tonight the CCC has an outing called “Teen Night”. I left Christine over in Tampa at the center so she could join the group for dinner and a movie. I think she voted on seeing First Daughter. I really hope she is enjoying herself. She knows a couple of the girls and most of the volunteers, so I’m sure she will be fine.
She has been complaining of her leg wanting to give out on her. I think there is something that feels weak in her thigh and knee area. The more she thinks about it, the more aware of course, so the fear of falling is always there. I left her the wheelchair and told her to push it as much as she could, and then sit when she felt tired or sore in her thigh. The more she moves, the better.
Next Friday is her MRI at All Children’s.
We were in the process of making the appointment in Palm Harbor, but their imaging center does not have the necessary piece to do her spine. The RX is for brain, C-spine & lumbar.
So we ended up making the appt. for ACH after all.
The July scans from Duke are at the clinic so we can compare the current scans with them.
Please pray they are better! Ask everyone you know to pray for her! Thank you.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
The following is an entry I copied a while ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another favorite:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Thursday, September 23, 2004 10:20 PM CDT
Thank you for letting me ramble on about last night's dinner episode. I sometimes think that even a small distraction is important. It allows me to see that life does go on outside of the immediate danger zone. I feel that I wrap myself up so tight in the cancer world and need to get out!
I don’t usually like to pull the “Cancer Card” as one mom puts it (when describing her child’s behavior).
I felt this man probably walked the entire restaurant and singled our table out because we were all women sitting there and he felt he could intimidate us. I knew he thought our ‘useless chatter’ was taking up his time. So, I felt some satisfaction knowing I may have made him feel uncomfortable but, hey, he deserved it!
Enough already!
We have been talking about the upcoming MRI next week. There is a place in Palm Harbor that has an MRI machine that is said to have extremely better imaging, especially in the brain region. I am trying to work through the insurance issues and then will make an appointment.
Christine has her MRI with/ without contrast, (a drug that lights up hot spots if you will) so she would need to have her port accessed or an I.V. started.
This new location does not access ports.
I try to tell her I don’t want to drive to St. Pete (45 min. south) and turn around and drive north (1 hour ) to Palm Harbor, only to turn around and go back to the St. Pete clinic at the end of the day to be de-accessed. Just let them start an I.V. there and we’re done with it.
Yet she is afraid and wants to be accessed via her port. I agreed to drive to be accessed but to consider me doing the de-accessing once we were done. I’m not sure the doc’s would allow that, I’d have to ask. I’m up for the challenge. Hey, we used to give her shots in the leg all the time. This can’t be too bad. Right?
Tonight Christine and I had a difficult conversation. She approached me with a big smile on her face and asked me if this drug she is taking 'is the one’ that kills the tumor, would she be done?
Well, I answered honestly and explained that the tumors would have to be smaller or at least the same to continue this drug.
Then she asked how long.
I told her I didn’t know.
She says, “They can’t give me this drug like forever, can they?”
“Well no”, I replied.
We continued this for a few more questions and then she needed to leave the room. I didn’t follow her since I figured she needed her space. I let her ask the questions and followed which path she was on and I could tell she didn’t really want or need any more information to process.
The following is an entry I copied awhile ago and saved it since it meant a great deal to me. I wish I knew where I got it. If anyone recognizes it, please let me know.
“So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!”
Another favorite:
"Do not pray for easy lives. Pray to be stronger men. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but YOU shall be the miracle."
Phillips Brooks
US Episcopal bishop (1835 - 1893)
May you have an awesome day. God’s Blessings, Cathy
Thursday, September 23, 2004 0:02 AM CDT
“This Has Never Happened Before”
Tonight was an exciting night! I joined a group of gals for dinner at the Cheesecake Factory at International Plaza, Tampa.
We are a group of women who have met through the Children’s Cancer Center.
Along with meeting at the center twice a month (with the kids etc.) we decided to meet for dinner and hang out and enjoy each other’s company, “away from it all”.
HA! Where is “Away from it all?” I want to go there! Book me a flight, block my schedule, load the car… you get the idea.
We enjoyed awesome food, great service and each other. Wish more ladies could of met us – perhaps schedules will be better next time.
Things got interesting as we were winding down and paying the bill. I noticed several women walk by our table and slow down and make comment of the table next to ours, which seated four and was just cleared and reset. I could see they were “counting” seats at our table rather quickly as they walked by. I didn’t think much of it, until later, when this man comes over and sits at the end of our long table. He states something to the effect that his party has been waiting a long time to be seated and since his party was a large group (there to celebrate a birthday) they basically needed our table.
He proceeds to sit there by himself and read the menu until two others join him in his party. Now they are all in a row along the bench seat, not sitting at the empty table next to ours. Are you picturing this?
Very strange indeed…
I sense we all were sitting there thinking the same thing: How can this man have the guts (or other anatomy parts) to sit at our table and wait for us to leave? I know the restaurant does not take reservations, so does he think by sitting at our table he is claiming “squatters rights”? I ask you, is this too funny?
I went to freshen up and as I was away I had a chance to absorb all of this.
When I returned to the table, I stopped and introduced myself to him. He acted very casual and friendly. He asked if I knew how to Sign since the lady sitting next to him was deaf. I apologized that I did not know sign language and granted him permission to sign for me since he asked if it would be O.K.
I told him that tonight was a special night for us ladies. I told him my daughter has cancer and we are a group of “Cancer Mom’s” and that we are trying to meet once a month for a fun night out together. Tonight we picked the Cheesecake Factory. I further went on to say: We Eat Stress for breakfast and cheesecake for dinner. We could be 5 minutes or 5 hours and I was sorry he had to wait for his table.
He was apologetic and explained that they have waited for a table since 6:30 and now it was close to 8:30. He got up quickly and left. I am not sure at what point he stopped “signing” to the lady next to him. Ha, I had him beat. He has a deaf woman- I have a cancer child. No contest in my eyes. Know when to hold ‘em, know when to fold ‘em.
The management came over (since they had a watchful eye on us ever since he left the lobby area). This is MaryAnn’s favorite part I think:
“This has never happened before!”
Our life story. They were gracious, but as I was driving home I thought to myself, we should have acted insulted and requested a free meal. Oh well, the point of getting out tonight was being together and having a nice time and that we did!
Can’t wait till next month… what kind of fun shall we have???
I am grateful for so many things. I am honored to have so many special people in my life.
Thank you; Lord, for the wonderful friends, the time and means to enjoy our lives. We don’t know how many birthdays we get to celebrate- so don’t take anything for granted (and don’t take a large group to the Cheesecake Factory to celebrate them!)
God’s Blessings, Cathy
A special prayer request for Bailee and her brother Michael. They are in New York awaiting Bailee’s bone marrow transplant, and her brother is the donor! We miss you guys and want to send hugs and prayers your way. God’s speed my dear!
Robin, (mom) is built of rock. Traveling so far, having two very nervous children with her, circumstances that I could not begin to understand! I know Bailee and Michael will be just fine, it’s mom I’m worried about. BREATH, ROBIN, BREATH!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
September is National Childhood Cancer Awareness Month.
With that said, I want to share this information with you from St. Jude’s Hospital.
Did you know... that about 4,000 children die from cancer each year?
So know the signs:
1. Recurrent fevers of unknown origin
2. Fatigue, listlessness or pallor
3. Headaches, often with vomiting, at night or early morning
4. Increased swelling or persistent pain in bones, joints, back, or legs
5. Swelling or lumps anywhere on the body
6. Easy and frequent bruising, bleeding
7. Regression of toilet habits
8. Change in disposition, e.g., whining or crying spells, unusual irritability
9. Stumbling or falling (subtle balance changes)
10. Nausea or loss of appetite
11. Insomnia or sleeping too much
12. Double vision or other eye problems
Of course, these symptoms can occur for reasons other than serious illness. Do not hesitate to seek second opinions if a doctor is not able to determine the cause.
Christine experienced #3 and #9 prior to DX. We had an explanation for the most part and we are grateful that our Pediatrician was as aware of the symptoms and ordered tests!
Small blessings such as early detection are probably the reason Christine is alive today.
She will live with obstacles all her life, but this awesome, beautiful girl will overcome them!!!
God’s Blessings, Cathy
Tuesday, September 21, 2004 7:57 PM CDT
Tuesday clinic update: A quick in & out for blood work only. Last Friday Chris received #4 chemo and look at her counts!!! Way to go!
WBC 3.8 (up)
HGB 12.8 (up)
PLT 62 (up by 2)
ANC 1600 (up by 300 !)
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
Saturday the girls did go over to Lakeland and visited Connie and Frank. They rode horses and goofed around all day. They love being there. Thank you Connie and Frank- judging by Christine’s blood work, being out in the fresh air and riding horses did her a world of good!
Sunday we were offered free tickets to the Buc’s game, but chose not to go.
After everyone woke up Sunday we talked about the parking, the wheelchair, etc… Christine thought that once she sat down in the stadium she would become a “prisoner”. Without the wheelchair close by, she wouldn’t be able to move around to get a drink or use the restroom without it being a big production. We decided that with the heat 90F at 4:00 pm we would be better off canceling. Thanks to the group at the Pediatric Cancer Foundation for the offer- hopefully next time!
The Children’s Cancer Center had scheduled a Circus Event at the Cypress location on Sunday, so the girls wanted to go there. They had a blast clowning around, getting their face painted, learning magic tricks. Thanks MaryAnn and all the staff and volunteers who do a fantastic job whenever they put something on for the kids!!!
Please continue to keep all the children and families affected by disease in your prayers.
A special prayer request for Bailee and her brother Michael. They are in New York awaiting Bailee’s bone marrow transplant, and her brother is the donor! We miss you guys and want to send hugs and prayers your way. God’s speed my dear!
Robin, (mom) is built of rock. Traveling so far, having two very nervous children with her, circumstances that I could not begin to understand! I know Bailee and Michael will be just fine, it’s mom I’m worried about. BREATH, ROBIN, BREATH!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
September is National Childhood Cancer Awareness Month.
With that said, I want to share this information with you from St. Jude’s Hospital.
Did you know... that about 4,000 children die from cancer each year?
So know the signs:
1. Recurrent fevers of unknown origin
2. Fatigue, listlessness or pallor
3. Headaches, often with vomiting, at night or early morning
4. Increased swelling or persistent pain in bones, joints, back, or legs
5. Swelling or lumps anywhere on the body
6. Easy and frequent bruising, bleeding
7. Regression of toilet habits
8. Change in disposition, e.g., whining or crying spells, unusual irritability
9. Stumbling or falling (subtle balance changes)
10. Nausea or loss of appetite
11. Insomnia or sleeping too much
12. Double vision or other eye problems
Of course, these symptoms can occur for reasons other than serious illness. Do not hesitate to seek second opinions if a doctor is not able to determine the cause.
Christine experienced #3 and #9 prior to DX. We had an explanation for the most part and we are grateful that our Pediatrician was as aware of the symptoms and ordered tests!
Small blessings such as early detection are probably the reason Christine is alive today.
She will live with obstacles all her life, but this awesome, beautiful girl will overcome them!!!
God’s Blessings, Cathy
Friday, September 17, 2004 4:52 PM CDT
Friday clinic update:
WBC 3.5
HGB 11.1
PLT 60
ANC 1300
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
#4 Chemo was received!
We saw Dr. Petrovic for the exam today. This was the first time she ever examined Chris. I like her bedside manner.
During the exam she asked Chris to do many “exercises” and the last request was if she would ‘wiggle her ears’ for her. Chris thought it was weird that a doc would ask her to do this, since she’s never been asked to do it before. But as talented as Chris is- she did it, and Dr. Petrovic was laughing and having a good time messing with her! All in all she seemed pleased with Chris’ heart / lung sounds etc.
Christine’s platelets were 60 and it was questionable whether or not they were going to give her the chemo. I guess the main concern is that since chemo lowers the platelet count she didn’t want Christine to experience any bleeding. We discussed her platelet counts in the past and Chris never had any problems with excessive bleeding (nose, mouth, etc.) Thank God, because of this, Dr. Petrovic agreed to run the Irinotecan.
Now Christine has a two-week break and we will schedule an MRI.
Next Tuesday Christine has an appt. to check her blood counts. Hopefully, a quick in and out kinda’ thing.
When we were entering the building at the clinic we ran into Dr. Carrey. She was the doctor who did Christine’s original surgery (11/01) and her Laminectomy (10/02). She was very pleased to see Christine looking so good! I gave her a quick overview of where we’ve been with regards to scan results, Duke, etc. and she said she would like to see the next set of scans. I requested her scans to be reviewed at the next Tumor Board Meeting. She agreed.
September is National Childhood Cancer Awareness Month.
With that said, I want to share this information with you from St. Jude’s Hospital.
Did you know... that about 4,000 children die from cancer each year?
So know the signs:
1. Recurrent fevers of unknown origin
2. Fatigue, listlessness or pallor
3. Headaches, often with vomiting, at night or early morning
4. Increased swelling or persistent pain in bones, joints, back, or legs
5. Swelling or lumps anywhere on the body
6. Easy and frequent bruising, bleeding
7. Regression of toilet habits
8. Change in disposition, e.g., whining or crying spells, unusual irritability
9. Stumbling or falling (subtle balance changes)
10. Nausea or loss of appetite
11. Insomnia or sleeping too much
12. Double vision or other eye problems
Of course, these symptoms can occur for reasons other than serious illness. Do not hesitate to seek second opinions if a doctor is not able to determine the cause.
Christine experienced #3 and #9 prior to DX. We had an explanation for the most part and we are grateful that our Pediatrician was as aware of the symptoms and ordered tests!
Small blessings such as early detection are probably the reason Christine is alive today.
She will live with obstacles all her life, but this awesome, beautiful girl will overcome them!!!
Tomorrow Christine and Katie are going over to Lakeland to visit Connie and Frank. They are so excited to see everyone- including the horses!!!
Sunday we were offered tickets (free!) to the Buc’s game and the girls are eager to see a pro game. This will be their first live pro football game!
We are waiting to see what happens with the Lightning players during this NHL shut out. Hurry and make a deal guys, we don’t want to miss Brad and Vinny and all our fav’s this hockey season!
Take care, God’s Blessings.
Cathy
Wednesday, September 15, 2004 7:20 PM CDT
Happy Wednesday Everyone,
We had a pretty quiet week so far.
P. T. on Monday.
Tuesday we went to Enterprise Art for beads and have a few new things made.
Today was Math studies.
Tomorrow we have P.T. again and hopefully head over to Tampa to the Children’s Cancer Center in the evening. This is the bi-weekly meeting where the kids get to hang out and do crafts/ games. After a light dinner, the parents meet and discuss all kinds of issues.
I love these meetings! It is truly a place where you can be very open discussing some of the really tough issues without fear of driving people away or making them uncomfortable.
We have been truly blessed with the family and friends that we have to support our family. But it is nice to talk about our “cancer kids” with other parents, since we all share the same concerns. Sometimes the humor alone is priceless.
Friday is clinic day. Depending on her blood counts, she is scheduled #4 chemo. Please pray her blood work is good. She seems to be doing really well as far as stamina and energy goes.
Christine continues to take her Protocel mixed with Diet Coke. She’s the bomb!
Take care, God’s Blessings.
Cathy
Sunday, September 12, 2004 7:55 PM CDT
Happy Sunday!
Today was pretty quiet.
We are watching Hurricane Ivan out in the Caribbean (near Cuba right now).
I am convinced that the NOAA web site is the way to go.
After watching enough weathermen on the local news shouting a lot of hype into it- I want to see it forming and moving myself- without all the added drama!!!
Hurricanes are unpredictable and therefore I predict the news folks are guessing too!
Other than that, we went to the pottery place to pick up what the girls painted when they were there a couple weeks ago. They had gone with their “Big Buddy”. Very cute stuff! They both wanted to paint another piece and I agreed to- if they paid half.
They agreed, and each picked out a plate to decorate. We didn’t have time to finish but we’ll go back later in the week.
Christine has been taking her PROTOCEL mixed with Diet Coke. She says it tastes a lot better that way. I’m so proud of her!
David took the girls on a bike ride through the neighborhood this evening. They went out on a “mission” to count the houses that were boarded up. 24 out of approx. 100 houses had some coverage on their windows. They were happy to report this news back to command central. We are very grateful to have the use of a three-wheeled bike for Christine. Thank you Barb!
I pray Ivan doesn’t come around, and wherever he does decide to land next - that he has all his oomph taken out of him.
Take care, God’s Blessings.
Cathy
Friday, September 10, 2004 8:37 PM CDT
Today we went to the clinic for the scheduled #4 chemo.
Christine’s blood labs were too low to qualify.
At first they poked her finger and the platelets were 50 and the ANC was 1000.
Perfect, exactly the minimum numbers to qualify, right ??…
Well, since both numbers were ‘right on the cusp’ of qualifying, the nurse wanted to check with the doctor first. In the meantime, Christine’s port was accessed to take the blood from her central line to double check.
The numbers dropped this time! Remember last week they went up when using her port?
So now the question is: Do we trust blood #1 or blood #2…
NO… let’s send it to the lab across the street at the hospital since the machine at the clinic might be temperamental.
Let’s see…. Blood #3 looks somewhere in the middle, so TOO BAD, SOO SAD.
Come back next week and maybe the doctor will see you.
Why do I get the feeling I am Dorothy standing at the Wizards door?
Oh well… We have our next appt. Friday (if there is anything left standing after Hurricane Ivan sweeps through). We will hope the numbers go up and she can get this last chemo before the 2-week break and MRI.
We started the Protocel yesterday. Wahoo!
I mentioned this at the clinic and they made copies of the literature I brought in.
Boy, is this going to be tough getting Christine to take. It looks like used motor oil and smells like nothing you’ve ever smelled before. I have smelled a lot of yucky things in my years, but this one takes the cake!
I can only hope that Christine realizes the benefits of taking this soon so it won’t become too much of a nightmare every 4 hours making her choke it down. I smelled the cap as I was preparing the ¼ teaspoon for her; I got some on the tip of my nose. Well, being curious I wiped it off and tasted it…and for hours afterward I tasted it. She took it again today. She is a true hero! I always knew she was special, but why do we have to test her so hard?
Please pray this works, we are running out of options.
Let’s see what else is new…
Aunt Jackie and Lily left yesterday. We miss them! Hurry Back!
Aunt Christine is next on the visitor’s list- hopefully Ivan doesn’t scare her away. I think we need to wait till the end of Hurricane season this year to make plans. Are we sick of this weather yet?!!!!
Hope everyone is safe and out of the path of Ivan.
God’s Blessings.
I have a little card that say’s this:
“Life is Short, Pray Hard”
XXOO, Cathy
Tuesday, September 7, 2004 10:53 PM CDT
Happy Tuesday almost Wednesday…
Katie goes back to school tomorrow. It’s been an exciting 5 days home due to Hurricane Frances. The timing with Aunt Jackie & Lily visiting has been great. Having such bad weather is not good - but having her home with us has been nice.
Everyone stayed cooped up Sunday & Monday, so we all had a bad case of ‘Cabin Fever’ today and so we had to get out! Where else would we go? The shoe store of course. Yup, every gal needs a pair of rainy day shoes. Really, Katie needed some school sneakers so we made a big trip out.
On Monday our cable and Internet went out. I was desperate to check the web sites of our friends and I came to realize how important Caringbridge has become. The messages are so special- thank you for visiting Christine’s site and especially when you leave a message. We love to hear from you!
Today we celebrated Christine being 12 years old. Tomorrow is her ‘official’ birthday and she will be an official teenager! Help!!!
I received several e-mails on the drug Protocel. Thank you for the responses!!
I went to their web site and read some of the literature they had posted. I called today and placed an order. I am willing to try anything at this point. I understand it has to be taken ¼ teaspoon 4-5 times a day and it is very unpleasant tasting. The biggest challenge is going to get Chris to agree to drink it that often throughout the day. Good thing I am not above bribing (or resorting to threats).
A very interesting thing happened on Saturday. Rhonda received an envelope with a donation to Christine’s fund from someone who wishes to remain anonymous. It was a very generous donation and I am so desperately wanting to thank this person. Since it was anonymous, I look at all the people I know and try to imagine who it is. Perhaps I never will know, but THANK YOU- whoever you are. You are a very generous person and my family is very grateful to you!
It has been such a sigh of relief having this support. The bills arrive from Duke and All Children’s and I never worry about this aspect of her treatment.
Thank you to Thrivent Financial Services, First Lutheran School and Church, and countless other friends who have helped us along the way.
Now would also be a good time to thank Children’s Cancer Center and Faces of Courage for their endless support! Boy, we are blessed to be surrounded by family and friends.
Please pray for some dear friends Bailee, Emily, Katia, Christina, Olivia and all the other children battling this disease.
Have a Blessed evening. XXOO, Cathy
Saturday, September 4, 2004 9:55 PM CDT
Today was an excellent day at the mall!
Everyone arrived at the Lancome counter and had a "mini" makeover. From there we went to the shops that were "cool"!
After several stores had been hit (hard) we went to the food court and re-fueled.
We finished off the day with a big "American Cookie Co." cake.
We have lots of pictures and hope to update the site tomorrow. Christine has already gone through most of them and marked them for making prints so she can pass them around and place a few in her scrap book.
A girl only turns 13 once in her life- and this was a really fun day for her! Thank you to everyone who was able to join and help her celebrate!
Even Baby Lillian was a trooper! I can tell she is going to grow up quite an experienced "shopper"! Watch out mom, she is gonna' keep you running.
Last night I went to a Caringbridge site that talked about a drug called "Protocell" and am very interested in finding out more!
If you, or someone you know has any info on this drug-please let me know! I went to their web site and was able to do a little research on it but it doesn't talk about where to get this drug. It is not an RX drug from a Doctor since it is an "all-natural" medicine. Anyway, I am looking at all the options right now.
Have a blessed evening and stay safe during this hurricane Frances! We expect a lot of rain and wind and hopefully that's all. Aunt Jackie is wondering why she decided to visit sunny Florida during hurricane season...hhmmm...could it be Christine's birthday? She'll decide if she ever wants to return on Tuesday...
Friday, September 3, 2004 11:24 PM CDT
Aunt Jackie and her 12-week-old baby Lillian arrived safely yesterday. She is so cuddly and sweet. You couldn’t ask for a better baby! The girls are crazy about her.
They will leave next Thursday – all too soon. Thank you so much Lynn H. for the use of your baby swing and bassinet. Most of the comforts of home.
We are watching as Hurricane Frances prepares to hit land soon. I suspect we will see a lot of rain and wind. Please pray for those in her direct path.
Tomorrow is Christine’s birthday celebration- unless something drastic happens to change that.
I know she is looking forward to this time with her friends. I wish we could have invited every one of her friends to celebrate. Unfortunately due to the fact that we’re at a mall and it would impossible to keep track of everyone. Also the expense keeps this something we have to do with a smaller group.
All of her friends are so dear and I am grateful we have them on our lives.
First Lutheran School is a small school, which has been so nice since the kids stayed very tight through the years.
That’s all to report tonight. I will update tomorrow with the “Big” days news.
Please pray for Bailee and Emily who is now back in the hospital.
Love, Cathy
Wednesday, September 1, 2004 9:18 PM CDT
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
Today was the weekly clinic appointment for chemo #3 of 4 (then a two week break).
We started off with a finger poke to check the blood counts instead of accessing her port. Her platelets were 49 and the doctor said “No” to chemo due to her platelets being too low. I asked the nurse what the threshold needed to be and she called the dr. that was in his office. She interpreted that they needed to be minimum of 50-60 for Chris to get her chemo. The nurse read the look in my eye when she told us to come back on Friday or Monday to be rechecked. At this point she offered to re-take Chris’ blood from the port to get a more accurate reading. We agreed and miraculously they were 67!!! O.K. now we’re in business. Chemo got in and she is out the door.
I was happy to get across the street and find out that our friend Emily was out of the hospital! Way to go Emily. Hope you feel better soon!
Waiting on an update from Bailee who flew to N.Y. today for her preparation for her bone marrow transplant. God’s speed Bailee!
Today is Grandpa’s Birthday! Happy Birthday Dad! Wish we could celebrate it together!
Aunt Jackie arrives tomorrow and I will give her extra hugs to take back home to you!
We still are looking at this Saturday celebrating Christine’s birthday. With the Hurricane Frances coming up the other coast we aren’t sure how much rain and wind to expect!
Let’s see, Labor Day weekend, the rain, the mall…. I’m getting nervous of the mall traffic now! But it’s going to be a blast I’m sure.
God’s Blessings,
See you tomorrow if I can put that baby Lillian down long enough to update! Ohhh…the smell of a little baby, I can’t wait!!
Tuesday, August 31, 2004 7:33 AM CDT
The past few days have been busy.
Since Christine received her “new” blood on Friday she has been feeling a lot better. They also started her on an antibiotic for the sinus infection and that seems to help her breath and sleep better.
Saturday night she went with the Children’s Cancer Center Teen Group to Celebration Station! Wow! A “teen” group outing. She felt so special when it was just her. No Mom, No Kate, just her with an awesome chaperone who let her drive the water boat alone and play arcade games that spit out thousands of tickets to be redeemed for prizes! She never decided on what goodie to ‘buy’ so she saved her tickets for later use. I think it is a ploy to get us back soon to play some more!
On Sunday, Christine and Katie had an outing with “big buddy” Kim. The Children’s Cancer again has a program that matches siblings of patients to second year medical students. This is a buddy to take them places and spend some quality time with them. Both girls love Kim so much and had a great time painting pottery and eating lunch.
Kim is now a third year med student who we know from last year and has agreed to come back even though this 3rd year is a more difficult and demanding schedule on her. Thank you Kim!!
Monday brought us back to reality. Kate went to school and Christine had P.T. Yes Gloria, we love you too!!!
We also celebrated Bailee’s birthday last night at Build A Bear. What a great time! Bailee is preparing to leave on Wednesday for Sloan Kettering in New York for her bone marrow transplant. Please keep Bailee and her brave brother Michael (her donor) in your prayers as she and her mom prepare to travel and take on this lengthy venture. We will miss them and pray for her health and quick return!
Today we will stay home & clean the house to get ready for Aunt Jackie and Lily’s visit. Christine has some studies to do and then off to Brownies we go. Chris will have her Daddy-Daughter Date night outing while we’re gone. I wonder what they will do??
Tomorrow is a clinic appointment. Depending on her blood work, she will receive her #3 chemo. Please pray there is no more delays in her treatment.
Celebrate today! Eat cake, smile at strangers and embrace it as if it were the only important day! Thank you for visiting and we love to have you sign the guestbook. Mail in any form is exciting and encouraging!xxoo
God's Blessings, Cathy
Saturday, August 28, 2004 1:50 PM CDT
Whew... The 12 Hour Doctor's Appointment!
Yesterday Christine was scheduled for a 1:30 clinic appt. for chemo. Her plateletes were too low (49) so the doctor said "no chemo today". Because her Hemoglobin was 7.4 they transfused 2 unit of blood. Given the time of day it was (by now it's 2:30) and given how long it takes to order and get the blood "pumping" it was decided to start the blood and then move us across the street to finish administering the blood at the hospital.
Well... I figured they ordered the blood and as soon as it came in they would get her started. I was wrong. The blood was ordered but it was 7 pm before it was running. We had to wait for a hospital room to come open and be cleaned... then once we got settled in we knew it would only be a matter of 5 hours or so before we got to go home. David and Katie came and visited with games and we watched the olympics. It was really nice to see some of the nursing staff we haven't seen in a year and a half! They were wonderful to Chris!
Her Saturday schedule was changed because of the late night. She is very sad to have missed seeing Connie and Frank today. Perhaps in a couple weeks they can try to get together again.
Next Saturday is Christine's Birthday celebration. It's Labor Day weekend so we hope Erin is home and can join us!
Chris also has a new Bucaneers bracelet.
:)Yes Merle, yours is already made:)
We hope next Wednesday that Chris' platelettes come up and she can get her next chemo(#3).
On Thursday Aunt Jackie and Baby Lillian come to visit!
We will pack as much fun as possible in the one week that they are here!
Please continue to pray for the cancer kids and don't forget to give blood if you can. I watched the blood flow into Christine yesterday and never really gave much thought to who was receiving my blood when I gave. Now watching it going into Chris I really appreciate the gift of life that it is!!!
God's Blessings to you.
Friday, August 27, 2004 6:58 AM CDT
Christine has clinic today for chemo #3. Next week is #4 and then she will be on a two week break.
After that they want to do an MRI and see if the tumors are responding. If so, we continue. If not, we stop.
I am not ready for this MRI. I think only 4 doses and 1 month is too soon and I don't want them making decisions like this on such short treatment time. This is a huge turning point for us and I am wanting the drugs to have as much time as possible to work. Please pray they are responding!
I spoke to Chris last night about chemo today and she is very tired of going for "more". As we approach the 3 year mark I can't blame her but I explained this was the only way we could "zap" the tumors. Surgery and radiation are no longer an option and this chemo has got to work!
Of course dangeling trips to Connie and Frank's to horseback ride and her Birthday celebration coming up- really help to keep her focused on other things!
Christine has been keeping very busy doing her beads.
It is so cool to her that folks are wanting to help sell her bracelets. It was suggested that we sell them on her website, but I don't know if we're ready to take orders and ship etc... It will be something to consider in the future. It has been so inspiring to her that folks really like them and she thinks it's so cool to raise money!
Her 13th Birthday is coming up and if it should come as no surprize to those who know Chris that she wants to celebrate it at the mall!
We have a small group of girls and we plan on cruising the mall for a couple hours and then close the day up with dinner and an American Cookie Co. cake! Her favorite!!
Please pray that this drug is working and thank you for checking in on us today. All the words of encouragement and hope are so important to us. They really lift us up and keep us going. Thank you for the e-mails and checking in. Keep all the children fighting this disease in you prayers.
God' Blessings, Cathy
Monday, August 23, 2004 6:13 PM CDT
Happy Monday!
Today was a much better day for Chris. She had P.T. and then we went to Wal Mart for a roll cart to store all the beading supplies. Seems Dad that lost his work-bench area and wants it back. So we were evicted. Our project was growing and we need to make it portable so we can go from room to room to make it easier to move and work out of.
Saturday was Katie's skating party. Two hours of pure chaos with 17 kids - but everyone had fun. We had a lot of brave Mom's who skated also- way to go!
Chris missed the party and felt so bad she had to stay home. In an effort to guard her privacy, I can't give out too much info. or she'd string me up.
Today is our 18th Wedding Anniversary. I asked David what he'd change or do differently and he replied, "The month we got married". Wow...
It seems that if we got married in January or February we could go skiing and enjoy the colder winter climate as an anniversary date. I think we need to go this year regardless of the occasion. Christine and Kate have never seen snow and this year we really need to make it happen. Grandma and Grandpa (and all my sisters and brothers) live in Michigan. It's just a matter of driving or flying in the snow that bothers me. I will have to get over it and let the kids experience the snow and make snowmen etc...
Build memories, share this experience. I know I got my fill of snow growing up and that's why I live in sunny Florida! It's hard to imagine Christmas is right around the corner. My kids think it is "forever away"- I'm getting old and think of it in terms of only 3 months to shop and plan...
Have a Blessed week.
Cathy
Friday, August 20, 2004 10:58 PM CDT
Tonight I joined Casie's family and friends at the funeral home to say goodbye to a very lovely young lady. Casie you will be missed!
Chris has had a rough couple of days. Seems she has a sinus infection again. As soon as she is off the antibiotic 7-10 days later it is back again. I asked Dr. Barbosa on Wednesday to look at her throat and he did. He said it looked pink and all O.k. by his eye. No throat culture or lights and tongue depressors etc.. Since Chris complained of a sore throat on Wednesday I assumed it was just a sore throat. Well today she is full blown sinus gunk. Tomorrow is Saturday and I will call the pediatrician and see if they can take a closer look.
Other than being very tired and lose of appetite she seems to be tolorating the chemo well after dose #2.
We have Katie's party to look forward to tomorrow.
Hope everyone has a good weekend- let's hope the rain leaves us alone for a while to enjoy this one.
God's Blessings.
For God so loved the world that He gave his only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.
John 3:16
Wednesday, August 18, 2004 9:36 PM CDT
Please join us in prayer for the family of Casie Snow. She passed away this morning at 3:30. Her Mom, Dad and 2 brothers are facing such a difficult time of loss.
We met Casie and her Mom at the Children's Cancer Center. She was diagnosed Easter 2003 at age 18 with leukemia had just recently recieved a bone marrow transplant. After following her site and getting updates from her mom, we feel so helpless in knowing we couldn't add one more day to her life. She touched so many lives in her spirit and strength towards the other kids facing this terrible disease. Casie you will be missed. Fly free and spread your Angel Wings dear!!!
Christine had her 2nd chemo today at the clinic. Br. Barbosa said Chris looked pale. I said "Yes, she hasn't seen the sun in 3 years!" He seems to think she is more than that. He reviewed the lab work and gave her the O.K. for chemo. He feels that her platelets and hemoglobin are low etc.. but when I asked what the threshold numbers were to cancel her chemo, he replied that they can always give her platelets and reduce the doseage of medication and we weren't going to worry about that right now.
Getting Christine to the clinic is getting more and more difficult. She stalls and gives me such grief about having to go. I remind her of why this is so important and if she puts it off she will be admitted for chemo and it really stinks having to stay in a hospital room for days on end. That usually gets her motivated to get dressed and walk on her own free will to the car. I threaten her that she is light enough for me to carry and she laughs at me and says "O.K. CARRY ME" I tell her that folks would love to see her in her jammies.
Today we celebrated Katie's 9th birthday. She opened her presents and we made brownies with ice cream. She will have her party on Saturday with her friends so we let the idea of cake go since we will have one at the party.
It's hard to believe we celebrated a birthday today and will have a party on Saturday when it is Casie's funeral. How precious these 9 years have been with Kate and how fast they flew by. In equal time, when she is celebrating her 18th birthday we will reflect on how fast time passed by us.
Every parent fears burying their child. I know I do. It scares the hell out of me. How would we react? How would we carry on? Every minute we would long to hold our child for just one more day. Make today count. They are pricless and you can never go back.
God's Blessings.
Casie may you feel the comfort of the Lord's arms holding you.
For God so loved the world that He gave his only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.
John 3:16
Saturday, August 14, 2004 5:11 PM CDT
Our Hurricane Charlie Adventure!
The past couple of days have been exciting!
Hurricane Charlie missed us, Thank God! Please pray for those further south that were hit so hard!
On Thursday night we were going to see Hilary Duff but we canceled our plans due to the evacuations and the threat of rough weather and not to mention the traffic routes out of the county. I was really looking for them to cancel and reschedule the concert, but they did not. The tickets were compliments of ClearChannel so we can't complain- but meeting Hilary was a not an opportunity we get everyday!! The girls were very sad, but understood.
David worked late Thursday night. They put the plant on generator power and closed down production for the weekend due to the storm.
We watched the 11:00 pm news and at that time they projected the hurricane to hit smack dab into Pinellas/ Hillsboro county. We discussed our plan if it were to hit and decided to leave for a couple days. Even it only rained and the winds were high we thought we needed to get away to avoid the stress.
So at 11:30 we started packing up the truck and made quite an adventure out of it. While the kids slept we packed all the necessary food/ clothes/ important papers etc. that we would need and by 1:30am we loaded the kids and the dog and off we went. We decided to go to Tallahassee. We've never been to our State Capitol and we wanted to explore. We drove through the night and it was a very nice drive until we hit the North Florida area. Apparently Hurricane Bonnie left some rain behind her but other than that, we didn't have any traffic or delays getting to Tallahassee.
By morning we checked into a motel and set up camp.
After we slept a couple hours the girls were ready to explore. We found a movie theater and saw Shrek2 and ate dinner. Max traveled extremely well and never made a sound! The girls would never of allowed us to leave him behind in the house during a storm~!
Now we are home and unpacked. Nice to be home!
Funny how when you are faced with the possibility of leaving your home and not sure if it would be there when you returned...what you owned or thought was important enough to take with you amounts to very little.
Other than important documents and our very basic needs- we didn't have the time or room to take much. It sure was a wake up call. The adventure was scary, fun and full of surprizes. Best of all we had a good time being together and the girls were wonderful travelers. They played and got along so well considering they spent the better part of two days in a car.
Christine has been tired but other than that- the chemo she got on Wednesday hasn't made her sick. Food has been staying down and she hasn't had any headaches since Wednesday the 4th. Her next appointment is Wednesday 8/18 for dose # 2. This is also Katie's Birthday and we will be celebrating it quietly at home. Her "Real" party will be on Saturday when she has friends joining us at the Rollerskating Rink! Hopefully Christine will still be feeling good.
Cherish this day- God's Blessings!
Tuesday, August 10, 2004 9:04 PM CDT
Wednesday Update: 8/11/04
Chemo Day #1
The morning started out rather poor. Getting Christine up and dressed for the clinic appointment was like trying to drag me out for another root canal. She was very upset and said she didn't want to go. We had a little heart to heart chat about fighting the fight! I know she was very nervous about having her port accessed and getting a new chemo. I explained it was nothing she hasn't done before and the worst part was fearing it. After we got there for the 1:30 appt. they started her chemo at 4:00 and we were done at 5:15.
It will be a 4 week course and 2 weeks off for good behavior. Then the 4 week cycle repeats again after an MRI. It will depend on the results of the MRI if she is eligible for a second cycle. If the tumors remain the same or are smaller, we continue. If there is more lesions or the tumors are larger, we will have to assume the chemo is not working and stop putting this drug in her. Pray Hard.
Aunt Jackie is coming into town with baby Lillian on September 2- 9th. We are very excited to see them both! I will hope to find someone who has a baby Bouncy Seat/ bassinet and a Swing during her visit here. Please call me if you know of anyone who is no longer using theirs and wouldn't mind us using it for a week. Thank you!
I take my list of addresses and Thank You cards with me wherever we go and haven't made a big dent in my list yet! The list is very long and the cards I intend to send out to everyone who helped with the Fundraiser are slowly getting out. Please forgive me if you haven't heard from me yet. I'm also having a difficult time determining if someone made a contribution or bought raffle tickets, silent auction items, jewelery, etc. so if you don't hear from me it's because I was unable to decipher between all the events. Thank you from the bottom of my heart for all the support everyone has given us.
Hello,
Tuesday was an awesome day for the whole family!
Katie went to school and tonight she started back up with her Girl Scout troop meetings. Of course this includes a trip to McDonalds for the ritual "Tuesday evening dinner".
We have always tried to make it "our night out" since during the week she is at school and Christine and I spend so much time alone. So Tuesday's belong to Katie.
Christine and Dave turn this into a "Daddy -Daughter Date Night". So tonight she talked him into a trip to Target! Only one small item was purchased so they did really good!!
Today Christine and I went to Clear Channel for a tour of the entire facility compliments of Erin and Tom Doyle! It is amazing to see all the studios and radio personalities at one time! Christine received many "goodies" and said today was like Christmas! By the time we left she was loaded down with T-Shirts, CD'S and a poster etc... WOW, what a fun time! Thank you Tom and all the staff at Clear Channel!
Oh, one minor detail...she also got the tickets to the Hilary Duff concert Thursday night!
A gal by the name of Melissa asked Chris how she felt about meeting Hilary before the concert... needless to say Christine is thrilled to meet Hilary up close and personal! We talked later about taking Hilary's Life Story magazine which features the girls out in L.A. (back in December) for her premier to Cheaper by the Dozen and have that page (pg.45) autographed so we can frame it!!! Great memories, great times... enjoy every minute!
Tomorrow is Dad's Birthday:) We will celebrate it quietly. I haven't decorated the house yet and we don't have everything ready but Dad's are kinda' simple to please that way.
Tomorrow also brings the dreaded new chemo day. The drug is a Phase 2 trial drug and is called Irinotecan (CPT 11). In a nut shell, it is a drug that at least they know how to dose vs. over or under dosing the toxicity level. Not sure of the spelling on that word and Caringbridge does not offer spell check so bare with me!
We are taking with us the Prayer Cross we recieved tonight from Lynn. I feel so much comfort and peace knowing that so many prayers have been said in Christine's name. The amazing friends and family we have that care and comfort us...we are blessed!
Have a wonderful day and I will post to let everyone know how the chemo goes tomorrow.
The following is a tid bit of info I received from a web site that I thought was of interest to folks who aren't really sure of what a Phase 2 drug was. Also, anyone who is knowledgeable of how to add other caring bridge sites to Christine's site-please e mail or sign guestbook to let us know how to do this. Thank you!!!
· Phase I trials are the first step in testing a new approach in humans. In these studies, researchers evaluate what dose is safe, how a new agent should be given (by mouth, injected into a vein, or injected into the muscle), and how often. Researchers watch closely for any harmful side effects. Phase I trials usually enroll a small number of patients and take place at only a few locations. The patients are divided into smaller groups, called cohorts. Each cohort is treated with an increased dose of the new therapy or technique. The highest dose with an acceptable level of side effects is determined to be appropriate for further testing.
· Phase II trials study the safety and effectiveness of an agent or intervention, and evaluate how it affects the human body. Phase II studies usually focus on a particular type of cancer, and include fewer than 100 patients.
· Phase III trials compare a new agent or intervention (or new use of a standard one) with the current standard therapy. Participants are randomly assigned to the standard group or the new group, usually by computer. This method, called randomization, helps to avoid bias and ensures that human choices or other factors do not affect the study’s results. In most cases, studies move into phase III testing only after they have shown promise in phases I and II. Phase III trials may include hundreds of people across the country.
· Phase IV trials are conducted to further evaluate the long-term safety and effectiveness of a treatment. They usually take place after the treatment has been approved for standard use. Several hundred to several thousand people may take part in a phase IV study. These studies are less common than phase I, II, or III trials.
People who participate in a clinical trial work with a research team. Team members may include doctors, nurses, social workers, dietitians, and other health professionals. The health care team provides care, monitors participants’ health, and offers specific instructions about the study. So that the trial results are as reliable as possible, it is important for participants to follow the research team’s instructions. The instructions may include keeping logs or answering questionnaires. The research team may continue to contact participants after the trial ends.
Sunday, August 8, 2004 0:37 AM CDT
Rain, Rain go away...
Boy, if you live the Tampa Bay area you are probably as tired of the rain as I am!
Yes, "it's right as rain" as they say, but geez I feel like someone should start building the Ark by now.
Today was a quiet day just running to Enterprize Art for you guessed it...beads!
Chris has decided to make some different things such as key chains and bracelets with the Lightning Bolt colors! We really miss hockey season! Yes, Erin and Merle- yours were the first ones made!
Happy Birthday to Katarina! The big "10". Double digit now!
Sunday brings quiet family time and more rain I suspect!
It's O.K. as long as I get my errands done while David is home. Something about dragging the wheelchair out or having Chris run through wet parking lots that doesn't appeal to me. So grocery shopping will be the highlight of my day.
Next week is very busy for us.
On Monday Chris has P.T.
Tuesday we were invited to visit Mr. Doyle and Erin at the radio station for a tour of Clearchannel.
Wednesday is the chemo day and also David's (Dad's) Birthday!
Thursday, if Chris is up to it - a concert to see Hilary Duff.
Friday is the 13th and we may just stay home to rest!!!
(The last time I remember a "Friday the 13th" was when Chris was scheduled to have her chemo back in September 2002. They admitted her into the hospital and was getting settled in when they gave me the news that her tumor had metatasized and they sent us home. Whew,... how could you ever look at Friday the 13th any other way than HORRIBLE!)
Next week is Katie's birthday and the month seems to be flying by. It is so much fun hearing the girls talk about their Birthday plans. All the ideas they can come up with. Kate wants a rollerskating party and Chris wants... well let's just say... the entire day at the Mall. Stop there. She will turn 13 this year and has gone through so much how can I not want to give her the world? I think going to the mall with a couple of close friends with a limited budget given to each, then have lunch and close the day out with one of Christine's favorite stops...the chocolate chip cookie factory! Sounds like a good plan to me!
Oh, did I mention she also wants to re-do her room?
Yes, change it to a "Teenagers room". Somebody stop her:)
Please continue to pray for Christine and all the families affected by this terrible disease.
Thank you for checking in on us and God's Blessings to you!
Thursday, August 5, 2004 2:57 PM CDT
The last couple days have been filled with fun!
On Tuesday the girls and Erin went to see Cinderella and ended up at Erin's house swimming!
Thank you Doyle Family for having the girls over- they had a blast!
Wednesday was Katie's first day of school. It went as well as expected. Slow getting started... but after we discussed the nervous tummy and first day jitters she was fine.
Chris complained of a headache once and I applied the MiGRASTICK on her temples and forehead and she never mentioned it again. Later I asked her if she still had a headache she replied "No". Thank you Janice for this product! It works for migrains using peppermint oils and other ingredients and it sure beats giving Chris more steroids! Thank you!!!
Today Christine went to Physical Therapy and we all plan on going to the Children's Cancer Center tonight. We have Gretchen here joining us till tomorrow. She is doing Katie's hair with french braids while Chris rests from her hour of P.T.
I just spoke to Dr. Barbosa about the drug CPT 11. Apparently, when I tried to make an appointment today I asked how long it took to infuse this drug and no one knew the answer. So I waited to hear from Dr. B about this and he explained it infuses approx. one hour x 5 days a week. I was not happy.
1. The drive down is 45 minutes
2. The wait in the lobby is approx. 30 minutes
3. Chris' port would stay accessed 5 days a week
4. Infusing 1-2 hours
5. the drive home ....The entire day is shot!!
Then I remembered how we would stay admitted in the hosp. for 2-3 days every 3 weeks and realized this wasn't so bad after all.
After discussing with Dr. B. Chris' schedule regarding P.T., school tutoring and enjoying life in general, he explained that they could do it once a week.
I want whatever is the most effective and yet not too harsh on her system at one time. He states we would have the same side effects and effectiveness on the tumor either way. WHAT? Yup, the drug will lower her blood counts either way and if after one or two weeks IF the counts get too low they will not be able to deliver the drug. Only time will tell if she can tolorate the drug. We think positive and know she'll do fine through all of this. She always has. She is my hero. Everything she has been through- she has never given up! Always the strong willed child! Continue to pray she tolorates the new drug and is able to have it eliminate the tumors!!!
Thank you to everyone who checks in on Chris and the folks who sign the guestbook! God's Blessings to you.
Tuesday, August 3, 2004 8:22 AM CDT
5pm update:
We had to give Chris another dose of decadron at 2:00 today as we sat in the movie theater. I am having a lot of anxiety about these headaches. I don't know what the futures holds, but as Christine and I discussed last night- that wherever we have to go, whatever we have to do, to beat this monster-we will! She wanted me to promise. Of course this breaks my heart to even think we are having this conversation.
Thank you to everyone who has e- mailed, called or left a message in her guestbook. The words of encouragement and the prayers being said are so comforting.
Many times I run into people who ask how Chris is and I know they do this out of concern, so my standard answer is "she's fine". I can not possibly replay the words of the lastest scan results and our future plans over and over again. This web site was created to communicate to family and friends and if you follow this site it is the best way to keep up with our status. I thank you for following our journey.
Last night was a very quiet night- no headaches!
The only dose of Decadron (2mg) Chris had was in the afternoon and that seems to have solved the problem.
Since she never complained of headaches (in the last 2 1/2 years) this had me spooked. Hopefully we don't see them again!
Today is a special day. Max (our golden) turns the big "2"!! Now this dog is special! Since the day we got him he has blessed our house with the greatest companionship for the girls. Thank you Sharon and the folks at the Largo Library for Max!!! We will celebrate with doggie presents and we even have a small cake which we'll eat right in front of him as we sing Happy Birthday. Kinda' cruel since we won't be sharing any with him. But he has other treats he can enjoy.
Today is the last day of Summer Vacation for Katie. Back to school tomorrow. The girls are planning on seeing the movie "Cinderella" staring you guessed it...Hilary Duff!
They are excited to go with Erin from the Children's Cancer Center. Thank you Erin for inviting the girls out -we love you!
Last Saturday was the rummage sale/BBQ/Games at First Lutheran. The day was a success! We sold a lot of items! Thank you to everyone who donated their items and especially the gals who worked the rummage sale! Without all the help we had it never would of worked out so well!
Shari, Stephanie, Eleanor-you guys are the bomb!!
The BBQ was excellent (again) Thank you Young family!
Of course the list is so long and I would hate to leave anyone out but Thank you from the bottom of my heart to everyone who helped out and those who came out to support this event! We are Blessed!
Thank you for checking in on Christine today and keeping her in your prayers. So many children suffering from this beast called cancer. It must be stopped! Continue to pray for all the families.
Prayer must be working-otherwise we never could get through this. It's been said that 'you're stronger than you think' and I know it's true because of the support of family and friends that make this even possible. Thank you!
Monday, August 2, 2004 10:17 AM CDT
Afternoon Update:
I spoke to Br. Barbosa and he said to start Chris on Decadron 2mg every 6 hours. We still had some left over in the medicine cabinet from a while ago when she was on this drug.
We also discussed the results of the MRI and the plan to do the chemo CPT-11 locally. He agreed to do this. I will watch how often Chris says she has headaches and only then give her the steroid. I really don't want to mask the headaches and not know how frequently they are occurring. She is mostly afraid of gaining a lot of weight again. I assured her this was not a high enough dose to make a weight difference. Again, Thank you for your prayers - they do help us. Keep them coming!!
Last night was a rough one.
Christine complained of a headache and felt sick to her stomach. We both agreed it was due to the fact she ate the entire Air Head candy and was overloaded on sugar. At 3:30 she woke with a headache and on a scale of 1-10 she said it was a "5". I gave her Motrin and it seemed to help but she woke again this morning with a headache. I called the Doctor and spoke to a nurse and explained the situation. She said Dr. Barbosa would call me back.
Chris is not running a fever and wants to go to Enterprize Art for her beads.
I canceled P.T. for today since I don't know what the Dr. is going to want us to do.
I imagine it will be one of 3 things: Either go to the clinic or admit into the hospital or call me in a RX for pain.
I am hoping we can stay home and manage the pain here. Chris is so uncomfortable at the hosp, but then who isn't?
Please pray this is a passing thing. Pray, Pray ,Pray.
Wednesday, July 28, 2004 4:41 PM CDT
Thursday Update 7/29
Today we are marching forward! We went to Physical Therapy and lunch. Afer David got home from work, he and Katie mowed the lawns (we do the neighbors lawn also) so we decided we needed a break and caught a movie! We saw Spider-Man 2 and really enjoyed it. What I enjoyed the most out of the movie was the part where his powers were fading and he didn't understand why. As I interpret it, it was because of his fears. His fear of lying to his Aunt, and keeping from Mary Jane who he really was and what critical role he played in the parts of their lives.
Until he faced that and accepted the role and responsibilities that came with being a hero- he couldn't re-gain his powers.
I am no movie critic by any means but... it hit home for me. I realize that the people closest to us in our lives are not afraid of failure or loss- quite the opposite. They embrace us and are not afraid of getting hurt or try to protect us from dangers that come from being loved so deeply. We are blessed to have everyone surrounding us with an abundance of love. Thank you!
Mark your calendars for this Saturday! At First Lutheran Church and School, 1644 Nursery Road in Clearwater, from 9am till 1'ish we are having another rummage sale complete with kids games and BBQ!
Since we had many rummage items and food left over from the rainy event on the 17th, we decided to do something with it. Rhonda said she wanted to do it all over again since it was so much fun the first time! Just kidding Rhonda! I know of no one else who has as much drive and energy to accomplish what she does. As a wife, a mother of three children and a full time job- she is still able to coordinate and dedicate herself to helping our family. Now that's what I call a Labor of Love!
Please come out on Saturday and play!
I will update more more on our journey as we head into the weekend. I want to update everyone with our plans with Dr. Barbosa at All Childrens and look into possible treatment plans with Moffitt. We are not done fighting!!
Wednesday 7/28
We heard back from Dr. Gururangan from Duke. The scans show progression of tumor and we are faced with deciding future treatment plans.
The two choices are a Phase 2 study which require us to travel to Duke every 3 weeks for a drug called Oxciplatin and the second choice is to stay here locally at ACH and receive a drug called CPT11. This would be a drug infused weekly at the clinic.
After we receive an O.K. from Dr. Barbosa on whether or not he will agree to do this drug here, we can make a decision.
Both drug plans have the same outcome in terms of survival. Dr. G explained to me that since the tumor has been resistant to so many other treatment therapy modes that there is no cure.
Pretty much now we are faced with how it will impact the family. I can say traveling is not my immediate desire since Christine is very uncomfortable away from her own house and bed. Her body does not create enough body heat to stay warm and at night she freezes and can not sleep. We tried turning on the heat in the hotel and finally at 1 in the morning she fell asleep! This is a very small detail in the big scheme of things- we would pack her electric blanket for future trips. The other consideration is how it effects Katie with us being gone. The whole family dynamics is having to be considered.
There is no obvious advantange to traveling to Duke for a treatment plan that offers no greater outcome results. So much to think about. I know that Chris continues to amaze us and we will continue to fight this. Please continue to pray for her recovery.
Tuesday, July 27, 2004 9:59 PM CDT
It is so nice to be back home!
Christine and and I left Sunday for Duke and returned tonight.
On Monday they did a neuro exam and accessed her port in the office and then we drove over to the imaging center for her MRI.
I told myself that I didn't want the results until after we returned, but the curiosity was too much for me. We traveled too far and the wait was so long that I felt I needed immediate answers. Regardless of where I was- the news would be the same and I needed to know. I paged the Doctor to see if the results were read yet by the radiologist. He called me back to say the radiologist saw more tumor. I was weak in the knees. Immediately I was taken back to the day the doctor at ACH sent us home from our scheduled admit date saying the chemo wasn't working. I was certain after they did the exam and commented on how good she looked (compared to the last time they saw her) that the reults would be better. As you could imagine the night was a restless one. I fell asleep after telling myself that there had to be a mistake and if not, we still had an option for treatment. The doctor asked when the last dose of the VP 16 was given and since it was Saturday- we would have to wait 4 weeks before her immune system was back in order before he ordered the new drugs.
Well... this morning the doctor called me while we were still at the hotel and said the radiologist was looking at the scans in comparision to the last ones taken at Duke a year ago. He apparently measured them against the older scans when we weren't sure if it was tumor or not. Since then we have confirmed it is tumor and began the new treatment in April. So we are waiting to hear more to know whether or not the new drugs are working. We should know more on Wednesday. Please pray the scans are better.
Also pray for Casie who is now in ICU fighting infections.
On a good note - our friend Katia went home today after an 11 month stay at ACH and the Ronald McDonald house!! Way to go Katia!
Thank You to the organizations and volunteers who made Christine's Gray Ribbon Journey possible. I hope to not leave anyone out, because everyone there and those who helped behind the scenes baking and supporting those who were there are just as important in making this a success! THANK YOU!
We are truly blessed!
Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Saturday, July 24, 2004 3:49 PM CDT
PRAYER REQUEST FOR CASIE (A GIRL WE KNOW THROUGH THE CHILDREN'S CANCER CENTER)
UPDATE JULY 23, 2004 PLEASE PRAY FOR CASIE AS SHE IS NOT ONLY FIGHTING A FEW INFECTIONS BUT ALSO PNEUMONIA. CASIE IS A STRONG GIRL AND SHE REALLY NEEDS YOUR PRAYERS TO GAIN STRENGTH, ENDURANCE AND FOR THINGS TO REALLY TURN AROUND AND START IMPROVING FOR HER AGAIN.
Happy Thursday 7/22:
Tuesday was a clinic day for bloodwork only. Pretty uneventful. Numbers looked good (ANC's 1300) and we had the doctor check her throat. It has bothered her for three days starting Saturday night and turns out to be sinus draining. No strep throat, thank God! Today she feels much better and her throat is almost back to normal.
Today was registration for school. I love seeing everyone at First Lutheran. After so many years there I feel as if it's home.
It's awkward registering Katie and not Christine. They have Chris on the roster for 7th grade but not actively enrolled as we know it. She will continue to be tutored in English and do the Math requirements at home.
I imagine we will know more after our trip to Duke next week on how we will proceed with schooling. Depending on her immune system and the chemo protocol they use- we will be in a better position to judge.
Tomorrow brings Physical Therapy and a home visit from Katie's teacher. Friday is "Back to School" shopping for supplies! Saturday we will pack and chill out as a family hanging around the house. Kids will be bored because we aren't running around but... I love those days.
Thank You to the organizations and volunteers who made Christine's Gray Ribbon Journey possible. I hope to not leave anyone out, because everyone there and those who helped behind the scenes baking and supporting those who were there are just as important in making this a success! THANK YOU!
We are truly blessed!
Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Monday, July 19, 2004 11:50 PM CDT
Monday, July 19, 2004
Please keep the family of Debbie Frankenfield in your prayers. I worked with Debbie for almost 14 years at Sunstar and she passed away today from cancer. At 41 years of age, the breast cancer spread and there were no more treatment options. I will miss her terribly and ask that you pray for her husband and family for peace and comfort during this time of loss. Today she is an angel and is pain free... but leaves all who knew her filled with loss and pain. Cancer is is a beast that must be stopped. Too many of us have lost a family member or friend to it. Whether you're 4 or 40, the loss of a child to her parents must be so deep.
I remember her as a woman who lived a very rich life and gave so much of herself to everyone she knew. She gave me the chance to grow at Sunstar and was there for the birth of my 2 children. I stood up in her wedding to David, watched her son B.J. grow from a small child to a senior in high school. He will begin his first year of college this fall. I know he is surrounded by the love and support of David and his Grandparents who always treated me as their own. Debbie, I miss you, and I am a much better person for having had the pleasure to call you "Friend". May God keep you tight in his arms.
Sunday, July 18, 2004
Thank you !!!
Christine's Gray Ribbon Journey yesterday was an awesome event!
Rhonda, yes, you are AMAZING!
A special thank you to Lynn Hedrick.
We are truly blessed to have such wonderful friends in our lives.
It was a day surrounded by friends and strangers who pulled together to show support and kindness to our family.
All together with the rummage sale, raffle tickets and events, we were able to reach the goal of $7,000 to qualify for the full matching fund from Thrivant Financial Services for Lutherans.
We had to cancel some outdoor events due to the rain, but despite this we had a blast!
Cary Young continued to keep the BBQ running and the rummmage sale was moved for better coverage- all the shifting of plans throughout the morning had to require flexibility and organization- but this group pulled it off!
Where to begin to say Thank You...
Without the volunteers who manned the rummage sale, the food counters, put up all the tents, arranged the bake sale goodies and jewelry tables- this would never would have happened.
The list of raffle and silent auction items were great! We had so many cool gifts and one-of-a kind things to bid on. Hand-made sterling jewelry by Mr. Popp to hand made golf clubs, the list was long...
Lynn Hedrick- you Rock!!!
Below is a list of people and organizations I would like to make special mention:
Rhonda Campbell and Family
Lynn Hedrick and Family
Emergency Physicians of St. Petersburg
First Lutheran Church and School Families
Cary Young and Family
Thrivent Financial Services
Abundant Life Ministries Florida
Christopher Oz
Sharon Carvallo / Don
Eleanor Homer
Children's Cancer Center
Faces of Courage
Thank You to the organizations and cast of volunteers who made this event possible. I hope to not leave anyone out, because everyone there and those who helped behind the scenes baking and supporting those who were there are just as important in making this a success! THANK YOU!
We are truly blessed!
Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Tuesday, July 6, 2004 3:49 PM CDT
SATURDAY 7/17 FUNDRAISER UPDATE:
We are still on! Rain or shine.
There are activities plannned for inside the gym and outside regardless of the rain.
Please come out and enjoy the activities! Thank you, Cathy
Saturday 7/10/04
We would like to wish Aunt Liz and Colletta a Happy Birthday today!
It looks like a small bead factory at our house. Christine has some girls coming over today to help make bracelets.
Thank you again Mr. Pezutti for helping us get the beads!!
I took a picture of the girls picking up the beads at Mark's work and will hope to update photos later today.
We have all the appointments made for the Duke trip late July. We are going to be gone only 3 days including travel so it's should be a quick one. Once we return we will get the results
of the scans over the phone. I didn't want to wait in N.C. for the radiologist to read the scans the following day and then get the results in person (with just Chris and I standing there).
Over the phone in the privacy of our own home suites me just fine. Pray the scans are better or clear of tumor! I see her everyday and am amazed at how well she is doing physically. No headaches or vomiting. No loss of vision or hearing. All the things I look for in a day's time as I watch her. I have learned so much about the purpose of life and realize more than ever before the true meaning of the "gift of life".
Today remind everyone you like, love and admire how much you appreciate them. We sometimes know in our hearts that we do- but really take the time to tell them.
Give blood if you can. What a great gift to give to a friend or family member. Tell them you gave blood in their honor. Now that's a gift!
Have a blessed day!
Happy Tuesday,
Today Christine went to the clinic for blood work. We should know the results of her calcium counts by tomorrow. The ususal blood draw looked good:
ANC of 1500.
WBC: 2.8
HGB: 9.3
Platelets: 124
Range Reference: ANC 1500-6600
WBC:4.0-10.5
HGB: 12.0-15.0
PLATELETS:150.-450.
Each week it's like guessing the lottery numbers. Good thing we don't play- since we are never on the mark.
We are making arrangements now for the trip back to Duke in late July. This is for the MRI and exam.
We will try to get it done and return before school starts Aug. 4th.
I can't believe school starts so early! Katie is looking forward to 3rd grade with Mrs. Bershaw! Do the Happy Dance.
We will see if Chris is able to return pending the results of the scan and her immune system at that time. Good results...we move forward... bad results...we try a new chemo protocol (which is a clinical trial Phase 2 drugs).
Prayer gets us through the day. Hope lands us on our feet. Chris amazes us with her spirit and strength.
Christine's Gray Ribbon Journey:
Things are really getting exciting!
A lot of events are planned and so mark your calendars.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
If you know of a company that would like to donate an item or service, please let us know.
We have a letter from the Children's Cancer Center that outlines the event and gives business/service a tax I.D. number so their contribution is tax deductable. If you would like a copy of the letter, please call or e-mail me and I'll see that you get a copy.
Raffle Update:
There are so many really cool items that everyone has gathered! From hotel stays to a Tampa Tribune subscription (for a full year) and the list is growing very long. You do not need to be present to win. If you purchase a ticket just make sure your phone number is on it and we will contact you!
Bake Sale update:
Nicki has offered her marvelous talents in the bake sale arena and is coordinating this event. Anyone who likes to bake (or knows of someone who likes to) can contact Nicki at PLAYJACKS@aol.com.
If you are able to help out in any way, like manning a booth or helping with the rummage sale, please contact Me or Rhonda at jandrcampbell3@hotmail.com
Yeah!!! We'll have the famous Young Family from FLS cooking with their "megga grill"! I smell the BBQ now and am so excited!
Also, a huge Thank You! to Eleanor for taking in and storing the items for the rummage sale!
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is amazing. So many families committed to this event and helping out so generously with their greatest gift...TIME. Thank you.
Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Saturday, July 3, 2004 10:13 AM CDT
Happy 4th of July!
Wishing everyone a safe and happy Independance Day!
Thank you Mr. Pezzuti for letting us come by your work again to raid all your beads!! You are so sweet! By the way, GQ magazine is still waiting to hear back from you on the photo shoot in Hawaii.
Christine's Gray Ribbon Journey:
Things are really getting exciting!
A lot of events are planned and so mark your calendars.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
If you know of a company that would like to donate an item or service, please let us know.
We have a letter from the Children's Cancer Center that outlines the event and gives business/service a tax I.D. number so their contribution is tax deductable. If you would like a copy of the letter, please call or e-mail me and I'll see that you get a copy.
Raffle Update:
There are so many really cool items that everyone has gathered! From hotel stays to a Tampa Tribune subscription (for a full year) and the list is growing very long. You do not need to be present to win. If you purchase a ticket just make sure your phone number is on it and we will contact you!
Bake Sale update:
Nicki has offered her marvelous talents in the bake sale arena and is coordinating this event. Anyone who likes to bake (or knows of someone who likes to) can contact Nicki at PLAYJACKS@aol.com.
If you are able to help out in any way, like manning a booth or helping with the rummage sale, please contact Me or Rhonda at jandrcampbell3@hotmail.com
Yeah!!! We'll have the famous Young Family from FLS cooking with their "megga grill"! I smell the BBQ now and am so excited!
Also, a huge Thank You! to Eleanor for taking in and storing the items for the rummage sale!
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is amazing. So many families committed to this event and helping out so generously with their greatest gift...TIME. Thank you.
Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Thursday, July 1, 2004 9:31 AM CDT
Hello July!
I found this quote on our friend Katia's guestbook and wanted to share it with you:
“There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."
~~Albert Einstein~~
Everyday is our miracle. Everyday is our gift from God to us.
We pray for time together and pray for the time when we can be together again in heaven.
All those seperated from their loved one's will be together on God's schedule- not ours. That is the biggest challenge I know I face each day.
Yesterday Christine had a great time with the Faces of Courage group in Tampa. Katie went swimming and showed me her diving stunts! How fun it was to see her dive in the water so bold and strong.
Tonight we meet at the Children's Cancer Center for food, fun and friends. I really enjoy going there to see everyone. It's amazing how much these families share their strength and hints on coping. The girls love to go also. They play and hang out with volunteers and have such a good time- they always ask "is this Thursday a meeting day?"
Have an awesome Blessed day. Thank you for checking in on us. Please keep Christine and all the other folks facing this horrible disease in your prayers.
Christine's Gray Ribbon Journey:
Things are really getting exciting!
A lot of events are planned and so mark your calendars.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
If you know of a company that would like to donate an item or service, please let us know.
We have a letter from the Children's Cancer Center that outlines the event and gives business/service a tax I.D. number so their contribution is tax deductable. If you would like a copy of the letter, please call or e-mail me and I'll see that you get a copy.
Anyone who is able to help out in any way, like manning a booth or helping with the rummage sale please contact Me or Rhonda at jandrcampbell3@hotmail.com
Yeah!!! We'll have the famous Young Family from FLS cooking with their "megga grill"! I smell the BBQ now and am so excited!
Also, a huge Thank You! to Eleanor for taking in and storing the items for the rummage sale!
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is so amazing to all of us. Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Tuesday, June 29, 2004 1:24 PM CDT
Hello Tuesday,
Today was a clinic visit for bloodwork only. Quick in and out actually. The office was so quiet and they were running on schedule. A first I think since we began going there.
Christine's bloodwork was o.k.
Platelets are down but that is expected due to the drugs. We can only really monitor what is going on with the tumor activity with an MRI. The bloodwork tells us nothing more than how she is tolorating the drugs in regards to her immune system etc. I know by heart now all the neuro checks they do when she sees a doctor. Obvious things such as her speech and vision. We do not see a decline in balance (as this is her biggest issue right now). But at least it is improving with therapy and not declining!Praise God!
Late in July we will go to Duke and run her through a battery of testing, so we will know more then. Again, please continue to pray for good results and that the drugs are working!
This leads into why I love to tell people to give blood if they can. I used to think it was needed for people during surgery or after an accident. Little did I know that these kids get blood products constantly for maintaining their ability to live!!! Without it, I know Christine would have had to stop chemo many times because of her inability to produce enough "good" blood. Whew...
Tomorrow Christine joins the Faces of Courage group over in Tampa for an outing aboard the Starship Dining Yacht and the Florida Aquarium. Katie has chosen to stay behind because she wants to use 1 of the 2 "Mommy and Katie" days that I owe her. Believe it or not, she wants me to join her and the summer camp kids over at the public pool she swims at to show me all her new swimming skills. She even thinks she is ready for the diving board! How exciting! We probably will have to celebrate her victories with an ice cream cone.
Thank you Connie and Frank for Saturday. The girls had a blast "horsing around" with you. Christine came home a said "This was the best ever!".
Thank you Sheri and Stephanie for Sunday. We had a wonderful time watching the musical Grease! I was so surprized to see Frankie Avalon! A great show with great company, how cool is that?
As you can see, we count our blessings that the Lord has given us so many wonderful people to surround ourselves with.
Christine's Gray Ribbon Journey:
Things are really getting exciting!
A lot of events are planned and so mark your calendars.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
A dear friend, Craig Williams, has gracously agreed to take on the raffle. If you know of a company that would like to donate an item or service, please let him know. He can be reached at (727) 798-3072 or e mail Craig at craigwilliams58@hotmail.com
We have a letter from the Children's Cancer Center that outlines the event and gives business/service a tax I.D. number so their contribution is tax deductable. If you would like a copy of the letter, please call or e-mail me and I'll see that you get a copy. I can then forward it to Craig as well as any donation items for the raffle.
Anyone who is able to help out in any way, like manning a booth or helping with the rummage sale please contact Me or Rhonda at jandrcampbell3@hotmail.com
Yeah!!! We'll have the famous Young Family from FLS cooking with their "megga grill"! I smell the BBQ now and am so excited!
Also, a huge Thank You! to Eleanor for taking in and storing the items for the rummage sale!
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is so amazing to all of us. Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Friday, June 25, 2004 11:45 PM CDT
Hello weekend!! Friday, June 25, 2004
Today the girls finished up the week of Kite Camp in Tampa at the Children's Cancer Center. Wow, what a great week! The girls are exhausted but looking forward to a trip tomorrow to Lakeland to see Connie and Frank (not to mention the HORSES). They will probably wake at the crack of dawn to get ready.
On Sunday, Christine and I are going to see the "Grease" production at the Tampa Bay Performing Arts Center with Sheri and Steph Ward. They have invited us as their guests and this should be an awesome time as well!
Wow...next week will return to normal and we will be able to sleep in a little bit (ha, like that really happens?) and get some things done around the house.
We have been busy making bracelets and so the simple household chores have been put on hold right now.
Christine and Katie are looking forward to showing off their hard work at the event.
I ran into some of Christine's school friends throughout the week and they shared with me a couple of their ideas of crafts they have been working on in hopes of selling at the fundraiser. This is so sweet!! Kids as young as 8 & 12'ish feel so involved in this event and get so excited to share their gifts with our family. We are truly blessed to be surrounded by friends and family with so much love!
Lots of really neat developements on the fundraiser coming up. I have heard many people talk of some of the raffle items and I love how creative and generous people get with their gifts and services.
I think Rhonda still needs a face painter also. I'll know more this coming week. Any good references?
The kids love to get their face painted and parade around:)
Happy Tuesday, 6/22/04
This week kicked off Kite Camp from the Children's Cancer Center. A whole week filled with exciting things planned for kids on treatment and their siblings!
Today they went to the Build A Bear at International Mall and then Outback Steakhouse for lunch. The day ended with a special showing of reptiles and birds from Lowery Park Zoo.
Tomorrow is a boat trip on the Pirate Cruise with Capt. Memo's out of the Clearwater Harbor. By the end of the week the girls will be exhasted but very happy!
The Children's Cancer Center puts this together every year for the kids. They are a wonderful organization and I am so glad we have them here in the Tampa Bay area!
All medications are going smoothly. As long as we stay away from sunscreen!
I spoke to Duke and we have our next trip planned for late July. The Dr. is out of town for 2 weeks and when he returns he wants to see her to run the lab work and an MRI. I pray every minute it is showing improvement- or no tumor present at all! It amazes me that even though she shows physical improvement, they see tumor. I think they must have her confused with someone else-this can't be on my child! O.K. So I am over saying "that happens to other people".
So please continue to pray with me.
We'll work out all the flight details as we get closer. First we'll get through June having all the fun we can!!!
O.K. So nobody has guessed the riddle from the other day:
Question: Why did the pony have to gargle?
Answer: Because he was a little "hoarse"
Christine's Gray Ribbon Journey:
Things are really getting exciting!
A lot of events are planned and so mark your calendars.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
A dear friend, Craig Williams, has gracously agreed to take on the raffle. If you know of a company that would like to donate an item or service, please let him know. He can be reached at (727) 798-3072 or e mail Craig at craigwilliams58@hotmail.com
We have a letter from the Children's Cancer Center that outlines the event and gives business/service a tax I.D. number so their contribution is tax deductable. If you would like a copy of the letter, please call or e-mail me and I'll see that you get a copy. I can then forward it to Craig as well as any donation items for the raffle.
Anyone who is able to help out in any way, like manning a booth or helping with the rummage sale please contact Me or Rhonda at jandrcampbell3@hotmail.com
Yeah!!! We'll have the famous Young Family from FLS cooking with their "megga grill"! I smell the BBQ now and am so excited!
Also, a huge Thank You! to Eleanor for taking in and storing the items for the rummage sale!
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is so amazing to all of us. Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Donation Information:
Children's Cancer Center
4901 W. Cypress Street
Tampa, Fl 33607
(please indicate on your check that your donation is for Christine Clasen)
All donations are tax deductible. For further information contact Mary Ann Massolio, Executive Director (813)367-5437 ext. 1
Friday, June 18, 2004 10:25 PM CDT
Sunday update:
Happy Fathers Day!
I wanted to share a funny story I heard while my two girls were sitting at the table coloring the calendar they made for their Dad. I gave them a deadline of 8:30 to finish and get ready for bed. I followed it with whoever runs past that set time had to unload the dishwasher. I immediately heard Katie say "well.. that would be me" and then proceeded to tell her sister that there are children who eat off of dirt floors because they have no plates (so we, in other words we were privileged to have dishes).
Cracks me up when it really boils down to- she knew she wanted more time to finish coloring and made the best of having to do the dishwasher.
Boy, it's amazing what kids sound like at such a profound age of 8.
We wish all the Dads and Moms a happy Fathers Day! May the parents seperated from their children feel their warm presence and love being sent to them.
Riddle for the day:
Why did the pony have to gargle?
Friday, 6/18/04
Today was a pretty quiet day. Christine and I ran to Enterprise Art and had a wonderful time. Beads galore! I know...we have so many beads- but you know us girls. She is coming along wonderfully making her bracelets and needed just a few special one's! Don't worry Mr. Pez, Christine say's yours is next!
Update on Allergy:
We kept her going on the Benedryl every 6 hours and she appears to be doing very good. The swelling has gone down and her eye lid is almost back to normal. I heard from Dr. Gururangan (no, that' not a typo) from Duke. He seems to agree that the sun / sunscreen is probably the culprit and not the medications. We have not stopped any of her treatment drugs and since she is clearing up, it leads us to believe it is the sunscreens. Whew!
Now all we have to do is avoid sun/screen.
And we live in the Sunshine State???
The knee looks great, so the antibiotic is working.
Christine's Gray Ribbon Journey:
The kids and I met with Rhonda tonight at the Church and did a outside survey of the parking lot to make sure we would have enough room for parking and events. Later next week we are hoping to get inside and look around to plan more with Craig and anyone else who is able to attend. When I know more I will update.
We are hoping to get as many events inside as possible.
I know things such as the Horses, moonwalk and BBQ need to be outside. This is where I am concerned- that people have to endure the heat. Hopefully with all the shade trees and tents the outside area will be comfortable too.
The games, magic show and eating tables I hope will be inside the AC. I think folks would like to relax and chill down for a bit.
The Location:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility while our home Church and School, First Lutheran, is under construction.
A dear friend, Craig Williams, has gracously agreed to take on the raffle. If you know of a company that would like to donate an item or service, please let him know. He can be reached at (727) 798-3072 or e mail Craig at craigwilliams58@hotmail.com
Anyone who is able to help out in any way (like manning a booth) etc. please contact me or Rhonda at jandrcampbell3@hotmail.com
I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is so amazing to all of us. Please continue to pray for all the children and families battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Thursday, June 17, 2004 6:50 PM CDT
Hello Thursday 6/17
Faces of Courage, Allergic Reactions, Beads...
Yesterday was an exciting day for Christine. She attended an outing with folks from Tampa called "Faces of Courage". They took a group of children to Survivor Park and then to Lowery Park Zoo for the day. Christine was even interviewed by Fox 13 for the 5:00 news. We have it taped because we weren't back yet from Tampa. She's a little star! I think Peggy Sherry and her band of merry makers are awesome! Thank you Peggy and Faces of Courage! We can't wait till the next Wednesday outing.
While out for the day Christine applied sunscreen and immediately felt a burning sensation on her face and her eyes were burning. I packed Benedryl just in case (I take it everywhere we go). My thought when I packed it that it might be needed with the new drug she started for her knee...well after a run down to the clinic today, Dr. Grana and I feel (pray) that it was the sunscreen and being out in the sun that caused this. Which brings me great comfort on thinking back to Easter weekend when we were out at the beach and she had sunscreen on and woke up Easter morning with her face swollen and left eye nearly closed shut. WOW! What if it's only the sunscreen and NOT the new drugs as we originally thought. Pray, Pray , Pray.
We heard from Mr. Mark Pezzuti (the handsome one) that he discovered the illustrious grey heart bead we have searched the world for. He spared nothing to find this one little tiny bead in a haystack. Yes, Mr. Pez is our hero once again. He said to tell you he's not free to sign autographs yet- until he recovers from his exhausting search. Thank you!
Updates as they become available.
Happy Tuesday,
(Knees, Belleview Biltmore Resort and Spa, Craig Williams)
Read to learn more about these exciting topics:
Today was a scheduled clinic day for a comprehensive blood panel draw. Weekly they do a CBC by a small poke to the finger but now that Chris is on this treatment plan- the Dr. at Duke wants a comp. blood panel every 2 weeks with the results faxed to him. All this procedure requires is accessing her medi port to pull more blood. Sounds pretty routine to us. That is until Claudia, the P.A. saw Christine's knee.
Last Sunday, yes, only 2 days ago Christine decided to go out in the back yard to throw the ball to Max (our Golden). Well, I heard a "thud" followed by "OOWWW" and I knew that sound meant Chris had fallen. Sure enough, a simple scrap to the knee. All innocent enough, but with a child on treatment it could be bad news.
The blood was minimal and she seemed to bounce right back after the skinned knee was cleaned and bandaged. Back to normal. Today I saw a beautiful scab growing over the wound and even made the comment to Chris that her knee looked great and that her platelets and white cells were doing really good and the blood draw today should go really smooth. This was my first mistake, today anyway.
Claudia took one look at it and said it looked red and felt really hot to her and thought perhaps the doctor would admit Chris into All Children's today and place her on antibiotics. WHAT? For a scraped knee? Well dr. kerr came in and examined it and felt that Chris was in no immediate danger and could be placed on antibiotics at home. So that is where we are now. She tatood Chris' red area and said to keep an eye on it and that if it grew larger to come back in immed. To any parent that hears the words "infection and admit" in the same sentence- knows it means an automatic 3 day admit for observation. Boy, this was the longest 20 minutes waiting for a dr. to come into the exam room. You know the things that run through your mind like, "I have too many things to do", "Christine has a field trip planned tomorrow" etc.. My heart goes out to all the parents that make the hospital trip at least once every 2 weeks or sooner for fevers or anything else.
Blood work did look good by the way:
ANC's: 1700 WBC: 3.2 HGB: 9.7 PLT: 118 yahoo!!
The Location for Christine's Medical Fundraiser:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and the use of their indoor facility too.
There will many neat things offered for adults as well as children. Games, crafts and a special magic show by Christopher Oz. Showtime is 3pm-4pm.
The Dillanders will be there with their horses too! You know this is Christine's favorite thing to do:)
Along with plenty of food, music and a great raffle.
Speaking of a raffle: A dear friend, Craig Williams, has gracously agreed to take on this venture. If you know of a company that would like to donate an item or service, please let him know. He can be reached at (727) 798-3072 or e mail Craig at craigwilliams58@hotmail.com
So far I hear we have several gift baskets, services from local vendors and hear this.... A 3 day, 2 night stay (with breakfast) at the Belleview Biltmore Resort and Spa. How cool is that? Thank you very much Sharon and her sister for aquiring this! You girls are awesome!
Anyone who is able to help out in any way (like manning a booth) etc. please contact me or Rhonda at jandrcampbell3@hotmail.com
So much more... I will try to update daily as Rhonda gets information.
Thank you to everyone who has agreed to help out on the fundraiser for Christine. This is so amazing to me. Please continue to pray for all the children battling cancer and other illnesses. Have a wonderful evening surrounded by love. Cathy
Friday, June 11, 2004 6:15 PM CDT
Friday's note:
As I write, Christine and Katie are in the kitchen going through a gazillion beads that we brought back from our visit with Mark.
Mr. Pez you are wonderful! Thank you for the tour and all the goodies we brought home. The girls are going through them now planning their bracelets. The rest they will use at the fundraiser. Christine can't wait to see you again:)
Once we set up Christine's account with the Children's Cancer Center and finalize the event "sponsors" we can get a flyer out to the public. Now that we have the date, time and location we can move forward.
We are sad to hear that Mary Ann's mom passed away on Wednesday. We know Mary Ann from the Children's Cancer Center and have become close to her and think she is such an awesome lady for everything she and the CCC do for families everyday!
We heard from the Dillanders- and it is a "go" with the horses! How cool!
Riddle for the day:
What is worse than finding a worm in your apple?
o.k. nobody said it: the answer is "A HALF a worm!!"
Thursday 6/10
Congratulations Jackie, Art and brother Connor! Baby Lilian Elizabeth (8lbs 4 oz) was born at noon today! Please keep them in your prayers as she enters into her first days of life. God Bless you Lilian.
Seems we were able to secure a location for Christine's medical fundraiser:
Abundant Life Ministries
1550 Belcher Road
Saturday, July 17th
Time:11:00-4:00
They were incredibly generous to lend us their location and use of the indoor facility too. Thank you to everyone involved in making this happen. First Lutheran in Clearwater is our home Church and school but they are under construction and awaiting a new building. So with the parking lot roped off and improvements being made, right now is not a good time to plan an indoor/outdoor event there.
It looks like things will start to fall into place now. One really cool thing about this location is the ability to use the Dillander's beautiful horses for rides with the children. I am hoping to hear if this is a good date for Connie and Frank.
There will many neat things offered for adults as well as children. Games and crafts and a special appearance by Chris Oz to do his magic and puppet show. I hear he is fantastic and everyone just raves about him. Boy, no pressure there, huh?
Along with plenty of food, music and a great raffle/auction too.
Anyone who is able to help out in any way, please contact me or Rhonda at jandrcampbell3@hotmail.com
Christine is hoping to get by to visit Mark tomorrow to look at his cool crafts and beads he has been searching for, hopefully they are in. Either way, I know Chris will enjoy seeing his work. We have a lot fun things coming up to keep us busy and pass the time.
6/9/04
Happy Wednesday,
Tomorrow is an exciting day for our family! Aunt Jackie is having a baby girl. That makes Lilian Elizabeth our 11th cousin! Yeah! We wish we lived closer but will have to send our kisses and hugs to Michigan until we can see her in person. God's Blessing to you Aunt Jackie and Lilian:)
We are back from the clinic and Christine had her usual blood draw which looked really good considering the drugs she's on.
Reference:
NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 4.0 - 12.0
HEMOGLOBIN (HGB) = 11.5 - 14.5
PLATELET (PLT) = 150 - 450
IMMUNE SYSTEM (ANC) = 1500
Today they were:
WBC 3.8
HGB 11.5
PLT 108
ANC 1800
When we got to the clinic we were running late and had to wait in the lobby while the nurses were at lunch. During this time I ran across the street to the Hospital's coffee shop and went to visit a couple of mom's I know who are there with their kids and found out some disturbing news. Our favorite nurse- Kris is leaving Dr. Barbosa's office. I was crushed. This is Christine's favorite nurse and the only one she would let access her port. Today is her last day. Christine and I shed a few tears when we saw her and said goodbye. We wish her the best in her new job working in an adult Oncology clinic. Kris you will be missed!!
Needless to say, after arriving almost an hour late and waiting 45 minutes in the lobby I was out of "kick" when I was supposed to address the issue of them not returning my call with last weeks blood results. It turns out the blood work looked acceptable and was faxed to Duke etc. so I let the "you worried me sick" speech well enough alone.
Chris is losing some weight this week (approx. 2 lbs). I know her appetite is down but at least she is eating and keeping it down. As long as she eats a little to take her meds - that's the important part. Taking the drugs on an empty stomach is a bad thing.
I heard from Rhonda today. She was able to secure the location for the fundraiser. So the place is set -it's just the date that has to be set. We will know more by 6/20. Rhonda has put so much time and effort into this event. Thank you from the bottom of my heart! All the phone calls, all the time and contacts you had to go through. You are amazing!
Please continue to pray for all the kids fighting this horrible disease and 'medical issues' as Christine puts it. Love, Cathy
Tuesday, June 8, 2004 10:46 AM CDT
Happy Tuesday,
Yes- Tampa Bay is now the proud owners of the STANLEY CUP!!! Yeah Bolts!!
The answer to the riddle the other day:
Why is the Tooth Fairy so smart?
Answer: Because she has a lot of Wisdom Teeth...
O.K. I know that's silly but what do you expect?
Bloodwork results are still a mystery. No one has called me back after what is now a third message left. Chris has a clinic appt. tomorrow and I will definately speak to the Dr. and ask why this has gone so long without a call back. Even a courtesy call to let me know why the delay. I am not a happy camper about this. I believe we can get bloodwork drawn closer to the house at a Quest Diag. Lab and get results faster and if this bloodwork means nothing to them because her "care" is rendered out of Duke Medical Center then we can just see about sending it directly to Duke. Hopefully I will relax and calm down by tomorrow. Or not.
Today we should get news on if we are able to use Largo Central Park as the location for Christine's fundraiser. Keep your fingers crossed.
So many of our friends are in the hospital now for scheduled treatments / unexpected fevers please continue to keep these special children in your prayers.
Today we are going to the Largo Library to visit a dear friend Sharon. Next we are picking up Christine's masterpiece she painted at the "Everyone's An Artist" ceramic place in here in town.
So far so good on the drugs. No reaction. I see that it is drying her out real bad. All of her skin is flaking and it seems to bother her lips the most. I know so many kids who get the terrible mouth sores and I am grateful this has never happened to Chris. Her hair is starting to thin. I brush her hair and see so many strands on the back of her shirt. Since she doesn't have a lot to start out with, any loss is significant. I am constantly amazed at how well she is taking this all. I know when she was 10 before she was diagnosed how vain she was (as all young girls can be) and now as she approaches 13, she has accepted this extremely well. I am so proud of her. Last night when I was saying good night to her the conversation touched on her cancer treatment plans and she said "It doesn't feel like I have cancer- I mean that is so serious, it just feels like I have some medical issues is all". How about that? Some medical issues...she is something else.
Pray hard today. We love you and thank you for checking in on us. Leave a message if you can, if not we understand. I visit a lot of friends sites to see how their day is going and don't leave messages due to interuptions, lack of time etc.. But Chris loves mail. Gods Blessings to all, Cathy
Saturday, June 5, 2004 5:49 PM CDT
Happy Saturday,
New Riddle: Why is the Tooth Fairy so smart? Be the first to answer correctly! C'mon, you know you can do it!
So far so good on the 3 drugs together. The one drug: Etoposide VP-16 was reduced to 50 mg and taken every other day so this might be the ticket. I haven't heard back on the blood work that was taken on Wednesday. I called and left 2 messages asking for results. I hope by Monday we hear something. This was bloodwork above and beyond the usual draw they do- so I'm trying not to read more into why they haven't called me back.
Chris has been busy working on her bracelets. We think she has the perfect design made for her to sell as part of the fundraiser. As soon as we get more of the beads in we will post a picture and details about it. I'm SO EXCITED for her. She is anxious to be part of this and is really jazzed that it's working with beads. She is so crafty. I can't give away too many details- stay tuned for an update.
We plan on watching the Lightening play tonight.
Go Bolts!!!
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Wednesday, June 2, 2004 3:33 PM CDT
Reference:
NORMAL Blood Count Ranges:
White Blood Cells (WBC) = 4.0 - 12.0
Hemoglobin (HGB) = 11.5 - 14.5
Platelet (PLT) = 150 - 450
Immune System (ANC) = 1.5 - 6.6
Today 6/02/04:
WBC 2.9
HGB: 10.4
PLT: 135
ANC: 1.4 (1400)
Happy Wednesday,
Today Christine had a clinic visit with labs drawn and exam by Dr. Grana. She looked over Chris and said (again) that Chris looked very good. I think she has a hard time believing Chris is walking (and breathing). This is a whole story in itself! I pray every day that we continue to see improvement.
Today's bloodwork showed Chris is doing as well as can be expected since she is on all 3 chemo drugs again (as of yesterday for the Sotret). I don't imagine they will look this good for very long because the longer she is on the drugs they will only beat her system down. Our hope now is that she doesn't have an allergic reaction again. We are waiting for the other labs that are being tested for calcium levels etc. Tomorrow we should have those results back. Dr. Gururangan at Duke wants certain blood labs ran every 2 weeks - other than the typical CBC bloodwork done at the clinic.
We are going on a bike ride/walk later so Chris can get in her P.T. and I can start my walking routine again. I miss walking every day and I look like it too! Too many comfort foods tend to make clothes fit tight!
We are really looking forward to Thursday night at the CCC. We will be cheering the Lightening game #5!
I will update more about the fundraiser in the next week or two. I know Rhonda and a small army of people are currently working on the date and details. If you have any ideas / suggestions please give me a call.
Pray, pray, pray for healing and comfort for those effected by cancer.
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resources together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time, or are interested, please contact me via e mail or Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Saturday, May 29, 2004 10:16 AM CDT
(3 New Pictures from Saturday)
Happy Saturday - Horse day!!!
Today Christine and her friend Gretchen (along with David and Katie of course) went over to Lakeland to visit Connie and Frank to ride their horses. I opted to stay home and get some chores and errands done. I enjoy the quite but really miss the noise(?) I believe all parents can relate to this. I can actually have a complete thought and finish what I start without someone yelling "MOM!"
Chris seems to be getting around better lately. I relish the day she can "run" out to the mailbox and not need assistance. Physical therapy is wonderful and I know riding horses is an excellent way for her to get in as much activity as possible while she has the energy. She has so much fun being around the horses she never looks at it as work. We love you Connie and Frank!
Chris is back on the Etoposide VP-16 every other day. So the scoreboard looks like this: Celebrex twice a day, VP-16 every other day and after the long holiday weekend I will introduce the Accutane which brings her back up to all 3 drugs together as instructed by Dr. G at Duke. It's kinda' like introducing baby foods to your child, wait a couple days to see how they react and then start another.
After she is on all 3 drugs again we will hope to finish out the 21 day cycle and then schedule a trip to Duke for an MRI and exam. We need to do weekly clinic visits (local) for bloodwork and Dr. G wants different labs run to monitor calcium and other levels.
Katie has been out of school for one week now and after next week she will go to the First Lutheran summer camp for 2 weeks. This will give Katie an opportunity to run with the "big dogs" and it's filled with swimming and field trips so she can get out and burn her energy. It's amazing how I can have 2 completely different children. Not to mention one who has cancer, but one who loves to read and dislikes t.v. (that would be Chris) and one who loves to watch t.v. and is pushed to pick up a book (that would be Kate). This is not unusual I'm sure, but when one is physically challenged and can't do battle the way she wants to- this is where the "MOM" really comes in. :)
Tonight the Bolts play at Calgary and we are all excited to watch the game. Now that we understand the game a little better- also Brad Richards and Vinny to watch (our sweeties) Our house has become a "hockey town" Ha Ha.
There looks to be something brewing in late June early July for a fund raiser for Christine's travel/medical expenses. Rhonda (the amazing one) is trying to put together an event possibly at Largo Central Park. If anyone has any ideas/ resources please give me a call or the Children's Cancer Center. All proceeds go to the Children's Cancer Center (CCC) under Christine's name and are used only for Chris' medical expenses. They can be tax deductable!
Soon we will be posting (on this web site) some bracelets Chris and her friends will be making to raise money. A couple families at the CCC are shopping and designing a few samples for Chris to choose from. This is such an awesome place I love these families! Our lives are so touched by these families. If you ever have an opportunity to stop by the CCC on Cypress in Tampa please do. See the wonderful things these people do every day. Such a tremendous amount of love, hope and support.
One of the things we want to look into during the fund raiser is having the BLOOD MOBILE there and a screening/ donating table set up for a Bone Marrow Drive. We know someone out there has experience in this area and would love to talk to you to find out more. Please call me.
PRAY, PRAY, PRAY for all the families affected by cancer.
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time, or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Monday, May 24, 2004 5:39 PM CDT
Happy Monday!
Today we went to the clinic- It was very backed up and the waiting was over an hour for all patients. We didn't mind though because we were prepared to hang out for a few hours anyway. We had gameboys, wordsearches, etc. the things you know all too well to pack for the doctors. I guess being experienced does help. You look at some of the parents and kids who come in without the "goody-bag" and feel bad for them.
Christine's bloodwork looked very good today: ANC 2800 AND Platelets were 136 and WBC was 5.2 WAH HOO!!!
We started the Celebrex in the clinic (as soon as we arrived) and did not have any reaction!! Thank you for all the prayers. I know they help us through this difficult time of uncertainty. I pray for no allergic reaction, good blood counts, no headaches, vomiting, and above all the strength and comfort for Christine to handle this all. The Good Lord is watching over us in good and bad times. Thank you for checking in on us and taking this journey with our family. It is the comfort and love we need most.
A special Thank You to Rhonda C. You are an amazing person! This gal is helping to put together a fund raiser for Chris on top of an already full plate. Hopefully soon we will have a plan and can get the word out to everyone what the details are. I know the Children's Cancer Center is setting up an account under Christine's name to be used for medical expenses, More details to come...
I also heard from Darlene (Texas!) who sells Pampered Chef items and she is interested in setting Christine up an account under her name. When people order items, they can type in Chris' name and "Christine's Fund" would get a percentage of the sale. How cool. Thank you Darlene! By the way, you are the winner for yesterdays' riddle!!!
Chris has another one:
How do you make a slow horse fast?
Thanks for checking in on us today. Pray for all the children fighting cancer and remember to give blood if you can.
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resourses together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time, or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Sunday, May 23, 2004 11:15 AM CDT
Happy Sunday,
Today is pretty quite here. Friday and Saturday were filled with kids (6 to be exact) running around making such wonderful sounds celebrating summer vacation! So today we're laying low just relaxing and getting caught up. Wash the dog, return videos all the things normal people do. How funny- yes, we are normal people too!
Anytime the family is all together at home I am very grateful.
Christine has a riddle for everyone...let's see who is the first to answer correctly:
A cowboy rides into to town on Friday and stays 3 days and then rides back on Friday. How can this be?
We have discovered the girls have their picture in the Hilary Duff Life Story magazine. How exiting! Page 45 has the girls out in LA for the premier of Cheaper by the Dozen back in December. That was Chris' dream to meet Hilary. Needless to say we now have this magazine in the keepsake box.
We'll update again after we get back from the clinic tomorrow to let everyone know how the new drug went. Pray we have no allergic reaction again!
Thanks for checking in on us today. Pray for all the children fighting cancer and remember to give blood if you can.
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resourses together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time, or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Wednesday, May 19, 2004 6:45 PM CDT
Where to start... We recieved a phone call yesterday afternoon offering Christine and David tickets to the Lightning game. Way to go Brad Richards! He's number 19 for those who don't know hockey or the Children's Cancer Center. Because of Brad Richards, the families have an opportunity to not only watch the game but go into his suite he donates to the CCC. What an awesome experience for kids/families! Not only did Brad score two goals but David and Christine met a gentleman there. A man who previously met Brad and knew he had the suite for the families. Anyway, to make a long story short, John (our mysterious stranger) happens to be a cancer survivor and felt pulled by some force to visit the suite on this particular night. He talked with Chris and David briefly and gave Chris a prayer stone that he used to help him during his treatment/ journey. It is a small but very smooth stone similar to the worry stones I've seen in the past. What makes this so special is that it came from a man who is survivor! A stranger until this night- I truly believe we have been so blessed in the small miracles and big people that surround us everyday! Thank you!
Connie, Christine is holding me to the rain check - she won't forget my promise about next week coming out to love on your horses again:)
It is always nice to see that folks are taking this journey with us. I encourage you to please stop once in a while and sign in the guestbook. It is such a delight for Chris to get messages from friends, classmates and from all over the countryside.
Today Christine and Erin went to see the movie New York Minute. Thank you Erin! Can I adopt you? Wait, hold that offer until you finish College! Ha! Erin just graduated High School and is leaving in the Fall for Tallahassee!!Way to Go Erin!
Christine did manage to get some math done and is caught up for her English tutor tomorrow. We also got autorization from Humana for more visits- so watch out Gloria- Chris is pumped to see you on Thursday!
School yearbooks will come in tomorrow- hopefully. I've asked Gretchen to please see that all the 6th graders sign Chris' book before the last bell rings on Friday. Thank you Gretchen- by the way, the song from Josh Groban "You Raise Me Up" is on the stereo right now. You are such a beautiful girl and wonderful friend to Christine. Words could never express my gratitute to you and your family.
As you can see we are trying to get in as much fun stuff before the 24th. Monday will be Chris' next clinic visit. After we see what happens as far as her tolorance to the drug I will call Dr. Gururangan again to confirm our plan on a go-forward basis. I am so anxious to get an another MRI. I hate the waiting.
We have a couple dear friends that are back in the hospital due to fevers. Please say an extra prayer for Bailee and Emily tonight that they knock these fevers out so they can go home.
Thanks for checking in on us today. Pray for all the children fighting cancer and remember to give blood if you can.
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resourses together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Monday, May 17, 2004 8:40 PM CDT
Happy Monday!
We did not get authorization today for Physical Therapy. I know our primary doc and Humana are working on it. Something about how Humana can not find Christine's original autho on file. Scary.
Thank you Frank and Connie for calling and offering your help. I hope that Christine and I can drive over on Wednesday. She is really jazzed abour riding horses again. Yes, she thinks it's so much fun she has no idea how therapeutic it really is. Hee Hee.
Katie's last day of school is Friday. We are all looking forward to a relaxing time just hanging out here enjoying the time together. I think there's a couple movies the girls want to see and a pottery painting place near us that they've been asking to go to. I will try to get in as much time with both the girls before we have to go back to Duke. I think it is hardest on Katie sometimes. I know she misses us terribly and being away at school during the day she thinks Chris and I have parties without her. You know...eating ice cream and watching cartoon network without her. I know she understands, but for an 8 year old it just isn't going to be easy.
As the school year winds down, I think of the effects it has on Christine. It's another year being away from her friends and missing out on the social and educational exposure she had. We talk about when she is able to go back to school and how important it is to keep up with her studies- this keeps us both motivated to doing something useful (other than clinic and p.t.)
So much to look forward to this summer. I love planning fun things to do with the girls. Best of all is when we set up a really cheesy pool in the back yard and run around with the hose and the crazy dog Max.
Thanks for checking in on us today. Pray for all the children fighting cancer and remember to give blood if you can. All our love, Cathy
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resourses together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Thursday, May 13, 2004 10:37 PM CDT
Today was a scheduled clinic visit for bloodwork only. Her ANC's were 1300 and platelets came up slightly to 76.
We didn't need to get an exam room to see a doctor since she she has an appointment again on Monday, May 24 for her next chemo. We are approaching the 3rd (& final) drug by process of elimination to determine which drug she had the reaction to. On this date we will give her the drug while we are sitting in the clinic so we are near emergent care should it be needed. I know it will be hard on all of us walking in on that day. Katie, our 8 year old is out of school and will be joining us. I'm not sure if this is a good thing but I suspect Chris will like the distraction and buddy to hang with while we linger around the doctors office for a few hours.
This week we had to cancel both P.T. appointments for lack of an authorization number from Humana. Gotta love it! I know our plan covers 60 visits per calendar year and we've nowhere hit that mark yet but they also place an expiration date on every autho. Like this is a gallon of milk? What in the world? O.K. I understand it is to make sure patients qualify for P.T. after so many months, but if you are familiar with Christine's case you'd know that this is not an overnight fix. Hopefully we will get the o.k. for next Monday's visit. We miss Gloria and the gang at ACH Therapy center. Chris says "NO", But I know better.
It's amazing to look back through the months and see her physical improvements, slow- but improvements nonetheless. So we are shocked that they see more tumors in the MRI's. This is just not happening. The scans are our only way to monitor what is going on. The uncertainty is the hardest part. Wait and see, time will tell, we've heard all of this and realize we can not change the course that her beautiful life is on because God is in control. Please continue to keep Christine in your prayers. They are what helps us through this. Thank you!
Want to help, but aren't sure how?
I spoke to Mary Ann Massolio at the Children's Cancer Center about our future treatment plans at Duke in N.C. for Christine. After this battle for 2 1/2 years we are getting to the point that we want to explore our options of fund raising for her medical expenses. She has suggested that if anyone has any ideas or just a little time that they could give her or myself a call and we could put all our resourses together and do a fund drive to benefit Christine. She said a lot of local employers do a company match or other things throughout their businesses. Also groups such as Churches or schools could help with raffles or contests (anything that involves a community).
If you have any suggestions, time or are interested, please contact Mary Ann at (813)367-5437.
A huge THANK YOU to everyone out there who is keeping Chris in their prayers! Love, Cathy
Wednesday, May 12, 2004 5:45 PM CDT
Christine is now on day 7 of her second drug without an allergic reaction! Her platelets were low last Thursday so the dr. from Duke did not want her to start the first drug over again (running with the Sotret) so we will have to wait to finish this 21 day drug course. This delays the 3 drugs running together further back. The Dr. from Duke wants Chris to finish at least one 21 day cycle of all 3 drugs before he has her back for an MRI. So we are looking at July sometime at the earliest to see what's going on in the brain region and whether or not the drugs are working.
Christine wants to tell everyone she went horseback riding on Saturday with the Dillanders in Lakeland and had a blast!
Thank you so much Connie and Frank for having David and the girls out at your place. They always look forward to it- what an amazing thing for her spirits, it really helps!
I am looking into adding links and other cool things to Christine's site but haven't figured that out yet. Anyone out there who has done this before please let me know!
Thank you for visiting and checking in on Christine- please leave a note to let her know you were by and she will smile all day!
P.S. Some folks don't know about adding this site (or any other site) up under "favorites" on their toolbar so it is quickly accessed instead of always typing the whole address in. Have a wonderful day and God's Blessings to you!
Cathy and Cowgirl Christine
Thursday, April 29, 2004 11:22 AM CDT
We have had a very busy April!
We first started off April 1st with Christine's 3 new chemo drugs prescribed by Duke Univ.
On the 6th Grandma and Grandpa from Michigan came in town for Easter week. On Easter Sunday you may remember Christine having an allergic reaction to one of the drugs so we stopped all 3 drugs until we heard back from Dr. G. well... we waited a week for the Doc to get back in town and he instructed us to start the one drug Etopiside VP-16 back up for the remaining 10 days (which we completed today) and then give her a break for one week then start the 2nd drug Isotretinoin (Sotret).
We are scheduled a clinic appointment next Thursday. We can give her the first drug dose while we wait in the lobby. This way if she is allergic to the Sotret we will be there since the second outbreak would most likely be quicker and more severe and Dr. G has requested us to be in the clinic with help nearby should it be needed.
(I don't anticipate the Sotret being the problem, I believe it's the Celebrex but we'll know more later).
Meanwhile, in April we had my sister Liz (from Michigan) meeting her daughter Jeannie (from Colorado) down here for 10 days. Whew... time flew by so fast. Today we have no visitors and miss everyone terribly!
Christine had a clinic appointment yesterday and bloodwork drawn. Her ANC was 2100 and platelets were 126! She kicked bootie! Yeah! We saw Dr. Grana and as she was examining Chris she twice made the comment on how well she looked. We told her we have had a very busy month with visitors and she thinks that did Chris a world of good!!!
THANK YOU to the folks at Youngs Fire Department. James King sent Christine a Tee Shirt full of signatures of the emergency personnel. Way cool night shirt, Thank you:) There is a signature I thought I recognized: Jerry Lewis- any relation to a man I worked with at Sunstar Ambulance several years ago? If so, let me know.
Hope today brings you warm smiles and laughter. God's blessings to you and all the children fighting this horrible disease.
Cathy
Sunday, April 18, 2004 6:42 PM CDT
Hi it's Christine,
We have been having a blast this week!
On Thursday I had therapy and we went to the airport to pick up our aunt Liz.
On Friday we went to pick up our cousin Jeannie.
On Sat. Katie, Dad and I went horse back riding. Mom, Liz and Jeannie went to fnd a prom dress at the mall. When we were riding, dad's horse decided to lay down and roll over(I was scared.)I tried to tell my horse to stay on four legs. We asked Connie and Frank if they knew why the horse did it,but they had never seen it before. Anyways, Dad is OK!They also had baby chicks.They said we could have one,(as you probably know dad said NO!) but they were so cute. We had alot of fun! Thank you Connie and Frank!
On Sun.our grandparents from Michigan came over for a couple hours before they went back to the airport and we had a family get together.
Tomorrow we hear back from Dr. G at Duke on what I need to do to get back on my chemo schedule since I stopped last Sunday when I had an allergic reaction to one of the drugs. I think he will tell us how to start back up so we can figure out what drug it is I'm allergic to. I will let you know what he says.
Thank you for checking in on my web page.Remember to leave a message. I love hearing from you! Chicken chaser Christine
Check out the new pictures.
Sunday, April 11, 2004 1:17 PM CDT
Hi It's Christine
I hope everyone had a nice Easter!Katie and I had fun looking for our eggs.I woke up this morning and I have a swollen eye. My mom calld the Doctor at Duke he said to take Benadryl and see if it helps. If it does I will have to take it every 6 hours. If it doesn't work I will need to see a Doctor.( I feel a little better).This week I have been having fun with my grand parents!We saw "The Prince and me", the movie, then we had our all day mall trip!!! We also went to Clearwater beach! This week my count's were very good!
Have a good week! Christine
Thursday, April 1, 2004 1:55 PM CST
Hi it's Christine.
We are finally home. Our trip to Duke was nice. On Monday we went to see the doctor. He didn't have any scans done. All he really did was take a look at me and also gave me 3 new chemo drugs. We chose the one where we stay home and take pills. I will be getting sick and losing my hair. If that dosen't work we will change our treatment plan. The doctor said we won't need to come back to the clinic for 2 months and get new scans at that time. I will still need to get blood work done every week here at Dr. B's office.
We ended up spending the second day at the mall!!!We got things for Katie and dad(we also got things for our selves.) We found some nice things. It was a huge mall, it was called SouthGate Mall. We missed our family and friends. We finally got on the planes to leave! The ride home was fun.We went through the clouds. It was bumpy! Today Katie is feeling sick she is not going to school.I also got my Easter crafts done.Well I have to go and help Katie.
Christine
Sunday, March 28, 2004 5:35 PM CST
Hi everybody, Dave here.
Chris and Cathy made it to Duke just fine. Chris said that
the trip was " AWSOME " and she wasn't even scared, not even a little bit as she put it. She was impressed with
all the knobs, switches, and dials. This was a two leg trip, a hand off in Savana Ga. for the second leg. On the
first leg Chris got to sit up front and wear the headset
to listen to the radio traffic, which she thought was very
cool, and the pilot even offered to let her fly the plane
but she declined, this time. Ha, I could imagine her flying
after seeing her driving a go cart, but that's another story, let's just say that mailboxes are not safe around her. Anyway, the whole trip went just smooth as silk, they
left at 8:00am and they called me from the room in Duke at
2:30pm. The hand off was flawless, the planes even parked
next to each other. GREAT JOB ANGLE FILGHT!
I'll keep the info updated as I learn more.
Dave
Hi everybody, just a little update from
today ( Monday ). Chris had the check up, no scans or anything like that just
a hands on kind of thing, Dr. G said the latest scans from down here would
be good enough. He wants to try some
kind of oral treatments, more pills for
Chris, yuck, as if she doesn't take
enough but that's better that going back every two weeks or so. They don't
even have to go for a second appointment tomorrow, a free day if you
will, what kind of trouble could they get into?!?
Dave
Friday, March 26, 2004 10:04 AM CST
Hi it's Christine, today we are going to the clinic before we go to Duke. We are also trying to get some packing done.Our suitcase can only be 50lbs. Mom and I have to fit all of our clothes in the suitcase. It will be hard fitting our clothes in because I will probably take up most of the room in the suitcase (I am always cold). Well during spring break we had my friend Gretchen over for a couple of days. I also had therapy on Thursday and Gloria my physical therapist worked me for a whole hour! I was really tired afterwards so I missed a Birthday party. Too pooped to party!! Gloria says I have improved alot! My mom and I are surprised.
Well gotta go because I have to unload the dishwasher and plan my day. Love, Christine
Wednesday, March 17, 2004 1:15 PM CST
Well, I think we have a plan to get to Duke afterall. I called and made an appointment and have Angel Flight taking us on the 28th. The appointment will be on Monday and Tuesday. We will return on Wednesday the 31st. Wow, so many details to consider. I am very excited to get Christine there so Dr. Gururangan can see her again. We were there last July and I know she has lost a lot of her steriod weight and is walking so much better. I think he will be impressed with her outward appearance. Now we need to take more pictures of what is happening inside her head (I tease her and tell her it's rocks) but they will want to draw their own labs and MRI at Duke. That is why they want us to stay 2 days which translates into 4 days including travel, yikes!
As far as making arrangements to get Chris there - I have to remember how this effects Katie. She is a little concerned about us leaving her behind. I try to explain why she can't go, but I know she is still scared. I'm sure after the first trip she will know what to expect and become more comfortable too.
Today is St.Patricks Day and we plan on eating corned beef and hopefully go to the park after dinner to play ball and just chill out. Afterwards we can take the girls out for "green" ice cream- you know... mint chocolate chip:)
Thank you to the Children's Cancer Center and all our family and friends for their support- specifically these past few weeks! We are so blessed to have an awesome support network and caring people all around us!
Kiss and hug everyone you love today- even if you're not Irish!
God Bless, Cathy
Monday, March 15, 2004 8:37 PM CST
Just a quick update to share the news on Duke University, Brain Tumor Center. We received authorization from Humana today for 3 visits. Yeah! (It is typical for limited visits at first, but after we set up a pattern we can request additional visits).
This is a huge relief along with a flood of other emotions that come with traveling that far with Christine!
Every 3 weeks for approx. 1 year treatment plan is scary. She has already undergone such major life changing events I fear she will have difficulty traveling after several rounds of chemo and starts to feel crappy again. Geez...what is the right thing to do? I pray for our guidance to do what is in the best interest for Christine. One year in the big scheme of things... If we only had a looking glass that would zoom forward 5 years so we could see if her fight was won because of this decision. Of course there are no guarantees in life. period. Man, I hate this lack of control! O.K. God, take over- your turn to drive.
I called Dr. Barbosa's office Friday and asked that he return my call with the plan locally to treat Chris and I haven't heard back as of yet. I really will push the issue tomorrow before I call Duke to make appts. and plan the trip up there. I am waiting to hear from both facilties what the success rate is with both of their plans. I will know more at least by Wednesday.
Today Chris went to P.T. and we "found" 3 dollars in the dryer this morning, so of course Chris was convinced it was a sign to go to the Dollar Store. So naturally we went. I am so amazed at what she picked out. One item was an Easter basket for her Grandma and a set of hair ties for her sister and 2 items for physical therapy (baseball and bat kinda' stuff). I thought that was very thoughtful on her part. She is an amazing kid and she is loved so dearly. Christine is reading over my shoulders and I now want her to go to bed ....will update more tomorrow.
Hugs and kisses to you!!
God's blessings, Cathy and the dollar queen Christine
Thursday, March 11, 2004 8:17 PM CST
Hi it's Christine,I just wanted every one to know that today 3/12 is my mom's birthday.I wanted everyone to help me thank her for being my mom and doing such a good job. She does everything, she even went through cancer with me.(Well she didn't get cancer)but she has gone through my problems and hospital bills,and on top of that she loves and cares about Katie and I. Thank's for helping me let her know!
love, christine
Hi, A Big Thank You to everyone who has been checking in on Christine and especially those who leave such great messages! They mean so much to Christine to know so many people care about her and it's really exciting for her to get "mail" each day. Something to look forward to.
I am still waiting on authorization from Humana to take Chris to Duke University for treatment. I hopefully will know more by tomorrow.
I haven't spoken to Dr. Barbosa since he called me Monday. I can't help to think that they have exhausted their resources. I spoke to Dr. Grana back in February and I had to be the one asking about the next course of treatment and what clinical trial drugs were out there. Upon our next visit she had to leave the exam room to come back in with the info on Zarnestra (info such as name of the drug written on an index card) and didn't think Chris would qualify if her counts were'nt high enough (when they are high enough when off the chemo). To make a long story short in March Dr. Barbosa was on the clinic rotation and he knew nothing about Zarnestra in regard to Christine's case and had to call over to Dr. Grana to find out what she knew of Christine doing this new drug therapy. After Dr. B called on Monday with the news of her scans he made mention that Zarnestra would be avail in April.
After I called Duke and spoke to Dr. Gururanagan I sensed from him complete control of the situation. He mentioned 3 protocols that they have for recurrent disease and said we could evaluate Chris and determine the one for her. I felt hope was given. I have been so thoroughly impressed with Duke since we went ther back in July of 2002. I have had excellent service from scheduling, billing, all aspects of the health care professionals! Only now we wait to hear from Humana. Now if the drugs were available here I would feel a lot better. They are Duke's protocol's and have to stay at their facility. I don't know all the politics but I'm sure it comes down to money.
In the meantime we wait and pass the time by doing homework and crafts and all the other little things. The main thing is to keep things as normal as possible here. Katie is having a ball celebrating Lutheran Schools Week. Each day they have a different theme and it keeps things fun at school for her. Christine is happy to get ready for Easter. She is going through all the decorations and she is looking forward her Grandparents coming in for a week over Easter Sunday.
Everyday we count our blessings for all the love and support we have from family and friends. Thank you to the Children's Cancer Center for the wonderful support they provide. I just spoke to Maryanne today and she connected me with many phone numbers of organizations that fly children to treatment centers for their chemo. I am in awe that airlines and companies can provide empty seats on planes to children to their destinations for free!
Before I sign off, Chris received a joke from Grandpa today that she wanted to share with everyone:
Question: Which side of the chicken has the most feathers?...
Answer: The outside of course!
O.K. if you knew Grandpa's jokes... that one was funny!
All our love, Cathy and crafty Christine
Tuesday, March 9, 2004 11:50 AM CST
Well we heard back from Dr. Barbosa late yesterday regarding Christine's MRI on Friday. The news was not good. The doctor and radiologist saw 13 more tumors and the one we were watching from January has gotten larger.
I will update as we get our plan together on what we're going to do and if Duke has any new drug information for us. Please keep Chris and all the other children fighting this horrible disease in your prayers.
Saturday, March 6, 2004 4:30 PM CST
We went for Christine's MRI yesterday, Friday, March 5th.
We won't get a final report until Monday at the earliest. In talking to Diego (the gentleman who always does Christine's scans) he provided me some feedback so we don't freak out waiting days to hear something. He believes we are looking at the same lesion in the temporal region as the last time we scanned on January 8th. The good news is he didn't see anything new developing in the spine or brain. Also the size of the lesion is approx. 1 cm the same as the last scan. I know this is only a preliminary report and I shouldn't count on the final report from the radiologist to read the same results. We have been told medicine is not an exact science and I believe the people who do these scans everyday also know what they are looking at!
Exactly where we go from here I don't know. I'll talk to Dr. Barbosa on Monday and see what our options are as far as drug plan. Will update again after I know more! Please keep Christine in your prayers. Also keep our friends from the Children's Cancer Center: Bailee, Casie, Katia, Christina and Emily in your prayers because they really could use a hug from God right about now!
Hi It's Christine
This weekend was wonderful. On Friday Katie and I went to the American Idol concert with some girls at the Children's Cancer Center. It was so much fun I also got be with some friends and talk. On Saturday we cleaned the house after dinner we went to Jo-Ann's to get some fabric. I am making a placemat. I made one once before in OT but it didn't last long with our dog, Max. Yes- he ripped them. Now I am making more. On Sunday we went horseback rideing in Lakeland. The Dillandar's let us ride their horses. It was like a farm almost. My dad and I started chasing the chickens. I was pretending the chickens were going to peck our eyes out. That was why Katie didn't do it. We had so much fun riding the horses. Thank you Dillandar family!
Chicken Chaser
Christine
Tuesday, February 24, 2004 11:18 AM CST
Hi All,
Sorry we haven't updated in so long. Chris has been feeling really good lately so we've been out traveling and enjoying the nice weather.
Christine is back to physical therapy twice a week and continues to do her studies at home. Right now she is working with Tianne, her English tutor, and does her math at home with the help of Mrs. Dewar from First Lutheran School. Thank you so much Mrs. Dewar for helping us stay up on 6th grade math. I honestly love math now because she helps me understand so I can help Chris at home. Both these ladies are such a blessing. We are very lucky to have them in our lives!!!
Christine received her 4th chemo last Wednesday and was given a prescription for Leucovorin which helps minimize the side effects of chemo. I can't believe we have been battling this cancer beast for over 2 years and never heard of this drug before(?!). Anyway, it was one pill to be taken 24 hours after chemo and appears to have worked very well. Her ANC's before the chemo were 2400 and plateletts were at 82 and the hemoglobin 11.7 which looked really good this week!!!
During her clinic visit we spoke to Dr. Grana about the clinical trail drugs that are used in other facilities and she mentioned Zarnestra is being used at St. Judes. I got the feeling from her that Christine may not qualify for the drug because her plateletts typically run low and they need to be at > 100 and her hemoglobin has to be >8 to qualify her for this drug. So we shall see. I think the chemo drops her counts and if she were to have a break she would qualify for it and if they drop from the new drug well then we'll just cross that bridge if and when we get there. But to continue on this drug they are giving her now (IT Methatrexate) seems like we have better chances on a clinical trial instead of the low success rate of this drug! Please keep Christine in your prayers!
We have the next MRI scheduled for Friday, March 5th at 4pm.
Last weekend Christine, Katie and Gretchen did the big mall trip! What a nice time. The girls got to use their gift certificates to the Limited Too. They got several nice things and went into a lot of stores then we ate lunch and came home. Thank you to friends and family who helped us make the mall such a fun time!!:)
We hope to see some horses this weekend if the Dillander family is available and the weather holds up.
We are also repainting the laundry room. Amazing how a simple change in routine can make such a difference. All activities that don't require a clinic appt. or a hospital stay are wonderful! It turns out to be a bigger job than just repainting though. Since I use this room to do crafts and pay bills etc. I have discovered so much has made it's way into this room and now it's a good time to clean everything out! Ugghh.... and Christine loves going through all my stuff!!! I let the girls pick out the color...yes, you guessed it...the cupboards are now purple!
Kisses and hugs, Cathy and bright eyes Christine.
Wednesday, February 11, 2004 6:11 PM CST
As Christine already knew...she needed her "new blood". We went to the clinic at 11:30 and had her blood drawn which showed low on the hemoglobin (HGB) at 8.0 and low platlets (PLT) 39.
The normal range for HGB is 12-15 and PLT 150-450.
After we explained the symptoms Christine has been having they checked her over and requested blood since she was borderline for transfusion but since she was having headaches they decided to tranfuse, so we were there until after 5pm. It sure beats being admitted for eval or staying home wondering if it was the spinal headaches or something else.
While we were there we talked to Dr. Grana in the hallway of all places. (You gotta' love the wonderful chat that occurs at the water cooler:) we talked about other options for chemo since the IT Methotrexate was not the cure all. At best they had hoped to see shrinkage of the tumors on her next MRI which would indicate that the cells were responding to the drug. I asked if this was not the "smoking gun" we were looking for:
a)Why give it?
b)Why aren't we saving her blood/ marrow to harvest for later date if needed?
Dr. Grana said the group meets on Thursdays and will discuss the case and find out if St. Jude's or Sloan Kettering has a clinical trial for a drug option for Chris. She said she would ask these questions of the group and let me know. We rescheuled her next appointment for Wednesday since this Friday was too soon to give Chris her 4th dose of chemo.
I am hoping to see Chris pick up a little more. I tell her since she got new blood she should jump up and down to get the blood pumping to all the places it hasn't in the last 3 days. She looks at me funny and rolls her eyes as only she can...
Oh yeah, I heard back from Humana today on their decision on the Duke Univ. denial. They approved it!!! They explained that they will only cover the 'usual and customary' charges for the services preformed but I am so relieved that this has been approved. I am especially impressed by the guy who handled our case, Herb, he was so genuine and sincere when he said that the group who reviewed Chris' case really cared about her and I am again blown away by the human spirit strangers show in times like this. The world is an awesome place!
Kiss and hug everyone you love or even somewhat like today- chances are they really need it too!
As always remember to give blood....the life you save could be Christine's or Katia or Emily or Casey....the list is so long.
We are looking forward to this weekend as Katie sings in the choir with her classmates and Christine wants to do her big mall event!!! How exciting... Love and Kisses, Cathy and Sluggo Christine
Tuesday, February 10, 2004 3:00 PM CST
Well Christine is feeling pretty yuckie today. She complains of dull headaches which worsen when she sits up for too long. I realize she had chemo 3 weeks in a row to her spine and hope that is the cause. "Spinal Headaches" as they are called after having spinal fluid removed.
She even looked at me and said she wanted "new blood" so she could feel better.
We had to cancel our Physical Therapy Eval with Gloria because I made a clinic appt. for Chris in the A.M. We've waited so long to get back into therapy and at the last minute have to reschedule the eval. Sorry Gloria, we miss you:)
I know I can't allow myself to panic because of the headache I'm just not liking the fact of the tumors in the temporal region-I immediately think it's growing! Everything else looks good such as her color, temp & eating/ drinking so I'll wait to see what her blood work looks like in the morning.
I had a 3 pm conference call with Humana today. This was to appeal their denial for services to Duke Univ. back in July. I hope to hear today what their decision is. I have appealed it 3 times and reached as far as the commitee so we'll hope for the best. Gotta love HMO'S!!!!
Tonight at 6:30 is Brownies with Kate and at 7:00 the evening circle at First Lutheran. I think it helps keeping busy. (Too much time on my hands I can drive myself insane:)
Thank you Connie for your call today- I shared with Chris your invite to see the horses anyday of the week (not just weekends) and she is happy about that! Now let's talk about that hour plus drive before she cons you into 5 days a week!!
God's Blessings to all. Hugs and kisses,
Cathy and Miss Princess, Christine
Sunday, February 8, 2004 10:22 PM CST
O.K. Laser Tag scores are in:
Christine scored 7th & 8th place out of approx. 20 players for both games! She had a blast. I wasn't sure we were going to make the party up until the last minute I was trying to figure out a way to get out of it. I think lately I have been so emotional that I didn't want to go because I felt I wasn't strong enough. Can you believe I am saying this? Christine is the one who has all the yuckie chemo and set backs and I'm worried I won't make the party? I guess because I can't drop her off and pick up when it's over, I know I have to interact with the other adults there. Well, I am glad we went. People always amaze me with their kindness and love towards our family, we are truly blessed.
Nikki at the Children's Cancer Center last Thursday night shared a message that I have repeated to others and continue to say to myself over and over again...
Friends come into your life for a Reason, a Season or a Lifetime. I find such beauty and truth in that statement.
Today we got the usual chores done around the house and then decided to go to the mall. Christine is waiting for her buddy to be free of her tournament games so she can plan her "really big mall outing" so I'll let you know when that date is set. Chris seemed so out of it today- not her usual self. Very tired and not motivated to do the simplest of tasks. I was hoping a trip to the mall would perk her up. We stopped at a couple stores and then hit the food court for Bourbon Chicken. Her appetite is so low right now I was hoping she would eat more than a few bites. I tucked her in tonight and explained that when she woke up I wanted the old Christine back- that whoever invaded her body today had to leave by morning. She smiled and agreed that the impostor had to leave.
Please remeber to give blood / platlets when you can or if you are unable to- but want to help- please remind your friends or people you know (assuming they are your friends too) to give this gift of life.
Hugs and kisses, Cathy and my sweetie Christine
Saturday, February 7, 2004 1:26 PM CST
On Friday Christine had her clinic appt. We ended up there for the entire afternoon. We ran into some problems with her low platelet counts (30) and since they will only give her the chemo if her platelets are greater than 50 we ended up ordering platelets and waiting a couple hours for it to come in. It only takes 30 minutes to I.V. infuse but the chemo was in question as to whether or not we were going to be able to administer it. After all was said and done Chris received her #3 dose and home we came.
Each month the doctors rotate thru the clinic / hospital and this month we saw Dr. Grana. I am always amazed at how one Dr. to another can change how you receive your information. I find with Dr. Barbosa he has a much more positive outlook and Dr. G seems to be more direct. I stated to her that we had Christine's bone marrow aspiration and the findings were very good and she left the room and checked the data and returned and said Christine's marrow shows at 60%. ?? What does this mean?? Dr. Grana explained that her marrow is compromised but is it bad enough not to use she can't say. Anyway the bottom line is this...we discover there's more questions than answers. Most parents of children who have cancer live this everyday and I think they can relate closely to this. We have this day and be grateful for it's beauty.
Today Christine has a birthday party to go to at Laser Eclipse. She is so excited. Even though she has such a rough time walking she plays while in a wheelchair and has a blast. I am always amazed at her courage and willpower. At such a tender age to want to "fit in" she accepts that she needs help walking and doesn't mind being in the wheelchair. I see folks at stores who look at her/ us and you can see the look of concern on their faces and I look inside- knowing Christine is a miracle and the fact that she needs a chair for certain outings isn't who she is- She is so much more!!!
Today we plan on kicking butt - we'll let you know how our score turns out at Laser Eclipse. Stay tuned.... Love and kisses
Sunday, February 1, 2004 5:00 PM CST
Well... unfortunately the rainy weather stopped us from doing a lot of our planned activities this weekend. We did not make the parade and horse back riding because of the damp weather. Christine has been on an antibiotic for a sinus infection for two weeks now and we figured it was better to stay in. The girls were very sad to miss these two very cool events but they also are old enough to know it was in their best interest. Besides trying to stay warm (and dry) we did get out a little to a couple stores and the girls filled out all their Valentine's cards to friends and classmates. Tonight we will snuggle in and watch the Superbowl and eat a bunch of munchies!
Please keep Casie and Katia in your prayers.
Give blood this Valentine's Day in honor of a loved one...and while you "drip" out your heart you will know you are a real lifesaver and a sweetie:) God's Blessings!
Friday, January 30, 2004 3:10 PM CST
Hi Everyone,
We just got back from today's clinic appointment. Christine received her #2 I.T. chemo and is scheduled 2 more then we wait one week and rescan with another MRI.
Her platelets were down this week and of course everything else looked a little low compared but hey, it could be a lot worse. Today as they sedated her before her injection she kept asking for more "La-La" drugs. I recited some silly things and asked her to remember them so when we were done she would repeat them back to me. Needless to say she didn't remember a thing I said. Good for her!
Saturday was our big mall shopping spree but we received a call from Peggy with her new organization- Faces of Courage- asking Christine if she'd like to be in the Gasaprilla Children's Parade on Saturday! She is very excited to be an honorary member of the crew Agustina. Their float is a double decker and has 3 port-a-potties on it. I laughed when I heard that but apparently when the crews are drinking beer- there is no getting off the float! Since it is a children's parade, I don't think Christine will be drinking beer... Maybe root beer!
The mall trip is planned for next Saturday!!
We are excited about horseback riding Sunday with the Dillander family in Lakeland. I know Christine loves horses and since she really isn't able to walk steady yet, being on a horse really makes her feel "normal" in an enviroment that she loves. It is an awesome feeling of power for her being on the back of a strong horse.
Thank you to everyone who has come by to visit Christine's site. Leave a message if you can to let us know you were by. She loves to hear from everyone! May you all have a blessed day!!!
Monday, January 26, 2004 6:23 PM CST
Hi everyone!
We just got the test results back on the Bone Aspiration and Spinal Fluid: ALL CLEAR!!! HURRAY! THANK GOD!
What this means is they see no evidence of tumor in the spinal fluid and her marrow is healthy. Pathology states it is "active and progressive" marrow so if we needed to harvest her marrow it is in ready state - our concern was that due to how much radiation she had after the surgery that her marrow was too compromised. So for now we continue to do the I.T. Methatrexate for three more visits (weeks) and then rescan.
We received a lot of great mail today! Thanks to our Aunt's Jackie and Christine plus photos from the great white north from Grandpa and Grandma and Moxie too!
Christine has set the date for this Saturday to go to the mall! Also, David talked to the Dillander family and they have graciously allowed us to visit their horses and ride them on Sunday. They are so sweet to keep Christine active around horses! If there are two things we can count on Chris liking enough to stay motivated thru treatment... it's malls and horses!!! Thank you Connie and Frank!
This morning we stayed in and Christine did her "Math Marathon" as we call it and then scooted over to Target to get cat food for the stray cat "Rajah" who's lived on our porch for 5 years now. Anyway, we ended up getting a whole lot more -is anyone surprized? Well Chris and Katie are really looking forward to doing their Valentine's cards to their classmates and friends this evening. Oh, how I love each day we are all home together and think of all the families that are making the hospital their "home" for now. Please keep Katia and Casey in your prayers since they are dear friends who are waiting for their Bone marrow transplants soon.
Remember to give blood- So many children each day need this gift of life!
Hugs and kisses, Cathy
Sunday, January 25, 2004 12:02 AM CST
We went on Friday for the testing and Christine did very well through all the needle pokes in her back. She tells everyone that that Dr. Barbosa pierced her "butt" but didn't keep the earings in it! They did the spinal tap and injected the chemo at the same time. They also did the bone aspiration and I wasn't prepared for them to do both hip bones! She is sore in the spots but a little Tylenol takes care of the pain. It mostly hurts when she sits too long. The docs want Chris each week for 4 weeks to get her chemo I.T. (Methatrexate) and then we rescan (MRI) to see what the tumors are doing and if they are responding.
We expect the results of her Friday testing this Monday the 26th. We are praying that the spinal fluid is clean of any cancer cells (it has been the last dozen or so times) and the bone marrow is healthy and clean enough to harvest. The Bone Marrow Transplant (BMT) Dr. Petrovick (sp?) will also be looking it over to determine if she is a candidate for harvesting. I am still having trouble understanding how this can be even happening since Christine is doing so well. Today we all are outside cleaning the van out and the girls are doing crafts out in the sun! Can you believe it's 74* degrees and the sun is shining. This is why we live in Florida!
Chris has planned her mall trip for next weekend. We are going to get a listing of the mall stores off the web site and highight every store she wants to visit so we don't leave and forget to check one out.
Give everyone you love a big hug and kiss today...let them know how much they mean to you. God's Blessings and I will update again tomorrow with the results.
Thursday, January 22, 2004 2:30 PM CST
HI it's Christine,
YES! We have planned our mall trip. We are going next weekend. I plan to visit all the good shops! I hope I don't spend too much money {I will spend alot of money.) We are also going to make a trip when we get to 10,000 visitors to my web page. We haven't decided where yet.{Mom doesn't want it to expensive.} We need help deciding where. Help give ideas to where we should go.We also want to thank you for making my mall trip happen.
Christine
Hello to all our mall fans!
I can't believe Chris reached over 5000 visitors that fast! (approx. 2000 since Thursday!) Had I known she had that many hits on her site I would of made the goal higher:) I know when her Dad told her she reached the 5000 mark she got so excited to plan her trip. I suspect we'll do the favorite stops at Claire's, Limited Two and then onto the food court for Bourbon Chicken. I'm sure she'll surprise me with a few new stores she wants to pop into!
Thank you to everyone who has stopped by to check on Christine. If you are able to leave a message- know that it does makes a huge difference to get words of encouragement and just plain fun talk that helps take our mind off of things. Please don't worry about saying the wrong thing because you can't- Perhaps someday I will share a story my own Mom and I had that will curl your toes. We both laughed till it hurt when I reminded her that her words of comfort were not her best feature. So please pop in and let us know you dropped by.
I spoke with Dr. G from Duke University on Friday and he has seen the scans we forwarded to him. He also is convinced that we are looking at tumor and doesn't feel a biopsy is needed. He would like to see Christine again to find a protocol for her that if ACH (Dr. Barbosa) agreed to it- we could do it locally. Keep the prayers coming!
OLD ENTRY:
Today I made the doctors appointment for next Friday (the 23rd) and we plan on doing a spinal tap and bone marrow scan. The spinal tap is to check her spinal fluid for cells and we have done these many times in the past with all the results coming back "clear" so we pray we get the same results this time. The bone scan is another story. It will be our first time and I'm not sure what all is involved yet. From what I understand the "scanning process" will remove tissue and bone from her hip to be checked for many things and from there we would be able to determine if her bone marrow is worthy of harvesting should we need it later on. If we were to need it - it is better that it's her own marrow and not needed from a donor etc...We will know the same day of the clinic appointment what the results are since it is done right there on the exam table and then if it is useable marrow we can harvest it kinda' like banking it for a rainy day.
A lot of folks ask how this news is effecting us and all I can say is that we are looking at a miracle in her everyday! We are together and God has a plan. I ask him everyday for miracles but also find comfort in knowing God has control and we don't. Please continue to keep Chris and all the other beautiful children facing this terrible disease in your prayers.
We have a way on the bottom on the web page to see how many times folks access her site- we are over 3100 visitors and so now Chris and I have a bargain made that when she reaches over 5000 we are going to celebrate by yes, you guessed it... going to the mall...what else???
Tuesday, January 13, 2004 4:37 PM CST
Today we received a call from Dr. Barbosa's office requesting we come in to discuss Christine's scan results. The Tumor Board met this morning.
There appears to be several small tumors seen in the brain- not the original tumor site. Dr. Barbosa said there were a couple options at this time which one being another biopsy and the second choice is to proceed with IT (Interthecal- injection into the spine) with Methetrexate chemotherapy. I asked Dr. B how he felt about the biopsy and if it was a moot point seeing that the experts at the tumor board meeting felt certain it was metastic disease, he feels 99% certain it is tumor and thinks since Chris did so well on this drug in the past that she would be better able to tolorate it and we can rescan in 2 months.
I have more to share about this but need to run to Brownies with Katie. It's cookie sale time and we sure need to keep things running as smooth as possible for now. (I am happy to take any cookie sales over the phone if you or someone you know needs a Girl Scout Cookie):) Boy am I glad they are not here until February since I could eat a whole box just sitting here!!! Stress maybe??? Let us know if you stopped by - Chris loves everyone's mail!
Friday, January 9, 2004 6:15PM CST
Hi everyone,
My hard drive problem still exsists, but I think Dave has all the necessary parts to fix it later tonight. (We just need the time!)
Dave took the girls to Blockbuster after school and picked up some movies and I ordered pizza- I just can't seem to get in the mood to cook today. The girls love pizza and movie nights anyway so they never complain!
Yesterday we went down to All Children's for Christine's MRI. It has been 3 long months waiting for this feedback and insight as to what is going on inside her head- literally!
We have not heard the official word back from the doctor's office and they know how hard the waiting is...
From what I gather from the scans is that there was something seen in the brain but the neck and spine was clear. So we will have to wait until Monday to know more. I did request when we saw the doctor in the clinic before the MRI that whatever the outcome I wanted the Tumor Board to evaluate the findings. So, I suspect they are waiting to get the group together to discuss the plan on treatment. I am sure the surgeons are saying "lets cut" and the docs at the clinic are saying "let's do more chemo" but as long as they are talking about a plan I guess I can live with that. The alternative is they say sorry we can't find any other options. O.K. Now I know that prayers are working because over a year ago they painted a bleak picture and the scans show that the c-spine area and the lower spine are clear... something is working and I am sure all the prayers making a difference in all our lives!!! Please continue to pray that they are benign lesions and not tumor as they suspect. I will update as soon as I hear anything more. The pizza is here and everyone is hungry! Please let us know if you stop by Chris's site by signing in- we love to hear from everyone!
Wednesday, December 3, 2003 11:06 AM CST
Wow, December already?! So much is going on we are very excited this Holiday! The last 2 years around this time we were surrounded by surgeries (and recovery) and yet this year is different. I'm not sure if our "normal" is quite like everyone else's but if you have a child who is ill you already know that there is no "normal" or "abnormal" anymore. Nothing is taken for granted and the holidays seem to bring this message closer. Family and friends take on a whole new perspective. The support system grew for us this year and we have so much to be grateful for!
On Monday night I took Christine and Katie to the Hilary Duff concert in Tampa. Sort of a sneak preview of what is to come on the 12th when we fly to L.A. for the premier of her new movie. I will keep everyone posted on that as I get more info. from the Dream Lady Joanne.
Chris had a doctors appt. also on Monday. Her blood counts were wonderful (ANC 3100 for those who know the numbers) But since it's been 7 months exactly to the day since she last had chemo we expected it to be good. As it turns out we saw Dr. Barbosa for 30 seconds as he came in to look at a white spot on Chris' tonsil area. He told Claudia to do a culture on it and left. As he blew out the door he looked at me and said Chris looks great. I suspect that when he looks at me and says 'let's scan her now' I'll know we have problems, but till January 8th when she is scheduled for her next MRI I will relax and know by watching her everyday for the symptoms they describe-I can relax and enjoy her better health. Whew!!!
I can not believe it has been the longest journey and yet the shortest.
One-Day-at-a-Time for me is exactly that. I can't think or worry about tomorrow or next year.
Chris is trying to get her Math done at home right now and will be completely caught up by tomorrow when she goes to school for Math class. We have an English tutor who is coming to the house weekly to get her caught up. All in all, when January 8th comes around and we do Chris' MRI we will be in a better position to see about having her return to school for more classes each day. She continues to do her physical therapy at home and at Lifestyles. January 1st starts the new year for Humana to pick back up P.T. and O.T. from the professionals at All Children's Therapy Center in Largo and we can return there for her workouts. We miss everyone there- Chris I think just likes to pick on them and make their lives tough:) I hope the folks there read this and know how much we love them! P.S. Barb, your Grandpa's 3 wheeled bike is still being used and enjoyed.
Enough for now. Thank you Katia's mom for sending folks our way. You web site is awesome and I hope to someday have Christine's looking a fraction as good and informative as yours. The ladybug games are a riot! How sweet.
Monday, November 24, 2003 7:16 PM CST
Wow! November has been very exciting for Christine and the whole family. It started out November 2nd with a trip to Granma's Hug-n-Farm with the Children's Cancer Center. We had a great time! The music, food, crafts and face painting were a real hit with the girls. Not to mention the animals and Granpa's hay ride- yee haw! They sure put a lot of planning and coordinating into this event!
Then we received a call from the Camp Good Days and Good Times out of Tampa inviting Christine to a Disney trip for 4 fun filled days (away from the family). At first Chris was a little concerned as we were too - that is until we went over and met Peggie who would be Chris' chaperone. It was love at first sight for Chris and from then on out she was ready to go! Needless to say, I was amazed when Chris would call home at night so excited and full of energy after such long days at all the theme parks. I was sure she needed this trip away from home since it has been 2 years since she was diagnosed and she's never been away from me for more than 2 hours! The trip was a huge success. Thank you Camp Good Days... you gals are wonderful!!!
After Chris returned home on Saturday the 15th she had just enough time to rest before we went on Sunday to the First Lutheran School Harvest Festival. What a great turn out this year. All the events! The group organizing this did an outstanding job! We especially enjoyed the horse rides and face painting. Chris didn't do the rock climbing but she plans on it next year!
On Monday the 17th Katie met her Brownie Troop for the tree decorating at the Harbor View Center in Clearwater. Their tree looked great and they had a fun time seeing the other trees decorated so elaborately! Wow... some folks really go all out to decorate their trees to benefit the Hospice and United Way.
On Tuesday, Cousin Connor(age 4) and Aunt Jackie (no age disclosed) arrived in Florida to stay a week with us! We went over to Orlando (again for Chris) and stopped at the Ripley's Believe It or Not Museum. Then we had dinner at Chef Mickey's and got to see a lot of neat characters come to our table and autograph the hats and Connor's coloring book! What fun!
On the 20th we went over to the Children's Cancer Center for a Thanksgiving dinner. It is always nice to see the kids and spend time with our "extended family".
Saturday the 22nd we went to the Lightning Hockey Game and got to watch the game against the Buffalo Sabres. We won 2-1!!! We sat in a large crowd of yellow T-shirts that represented the Tampa Bay Fights Cancer Night! The Steve Yerrid Foundation provided all the families effected by cancer free tickets to the game and t-shirts, hot dogs and ice cream- amazing people, Steve and his wife who do so much for the families!
We are taking Aunt Jackie and Connor to the airport tomorrow and then get ready to eat turkey on Thursday. I promise not to make such long entries in the future, I just wanted to share all the fun the girls have been having this month. December promises to be just as busy and fun. Hilary Duff comes to Tampa on the 1st and we have 3 tickets to see her concert. We were hoping to get a total of five tix so Chris could invite a friend but only 3 seats were available in a row. Anyone have 2 tix they want to sell? On the 14th we plan on visiting Hilary Duff in L.A. for the premier of a new movie. We are waiting for details from the Children's Dream Foundation.
Again, thank you to all who have touched our lives through support and prayers. Have a safe and wonderful holiday with your loved ones. Take care of each other!
Cathy
Saturday, November 22, 2003 7:42 PM CST
Christine was first diagnosed in November of 2001 with a posterior fossa medulloblastoma without any evidence of metastic disease, (brain tumor for the most of us). She under went surgery and had the tumor removed and was home in 10 days. She then underwent standard treatment with craniospinal radiation with a focal boost to the tumor sight, followed by chemotherapy using vincristine, cisplatin, and cytoxan. All was going as well as could be expected during this time, side effects to the chemo were the typical unpleasant "to be expected kind" and everything was getting to be routine. In October 2002 a routine MRI of the spine showed an enhancement in the region of L2 to L4 of the spine, that was thought to be metastic disease. She underwent a laminectomy and excision of the lesion, major biopsy of the lower spine. Pathology of the tissue was inconclusive for tumor, or negative as we see it since they are unable to prove that it is metastic tumor. In addition, Chris had suspicious changes in the sight of the orginal tumor in the cerebellar region. This region was thought to be too risky for a biopsy. The post-surgical course following laminectomy was complicated by spinal meningitis which required a prolonged hospital stay.
In December 2002, Christine was treated with temozolomide and intrathecal methotrexate, injections to the lower spine at the doctors office. She recieved this chemotherapy for 6 months until May 1st 2003. A post treatment MRI was done concerning progression of tumor in the posterior fossa, (brain again).
At this time we decided to seek a second opinion at Duke Unv. in North Carolina. Christine underwent another MRI of the brain and spine and a whole body FDG PET scan. The MRI of the brain revealed a small rim-enhancing lesion in the left cerbellar hemisphere ajacent to the fourth ventricle that was possibly recurrent tumor versus scar tissue. The MRI of the spine was negative for tumor. The PET scan was also negative for disease.
Based on these findings it was recomended that Christine undergo a biopsy of the lesion in the brain to rule out recurrent disease. However, given the intensity of treatments in the past, it was also reasonable for her to wait for another 2 months and have another MRI scan of the brain and re-evaluate this area. After this was done no change was noticed, and no course of treatment was recomended unless a biopsy was preformed. We have decided not to have the surgery unless there is a change in the brain area.
After this, Chris came down with the Shingles requiring another lengthy hospital stay. That was probably one of the worst times for her and setting her back physically several months.
Back in March of this year we decided to try Ayurvedic therapy, from India, that was recommended to us. This treatment is about herbal tea that she takes 1/2 oz. three times a day.
The long and short of all this is yes there is something there in the brain but no one really knows just what it is without a biopsy. That option would be very hard on Chris and we would just like for her to be a kid for a while and until there is some kind of change we'll let things be.
Now, does the tea thing work? Can't say for sure, but if it is a tumor up there then maybe it is doing something because it's not getting bigger and time will tell if it's getting smaller. I know that it's not the proper protocol of the medical field to use this type of therapy but it seems to help Chris feel better and so it seems to help.
That's where we stand now and time will tell. Her next MRI will be on January 8th 2004.
We feel very blessed to have so much support from our family and First Lutheran School and Church. Also, it is amazing the amount of help and encouragement we get from the Children's Cancer Center and Camp Good Days and Special Times in Tampa. Thank you to all the folks who keep Christine and our family in their prayers. We hope to keep this site updated as the holidays approach. Happy Thankgiving to everyone. Have a safe and happy holiday with your loved ones.
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