Friday February 2, 2001
Dear Lauren,
Your one year anniversary of diagnosis was yesterday. I went through all the journal entries and still can not believe how much your little body has had to go through.
One year ago you couldn't walk and we had no idea why. Everything was moving so fast yet it was in slow motion. You were admitted into the hospital and next thing I remember is the Neurosurgeon coming out to the waiting room and telling your mom and I that you needed emergency surgery because you had a tumor in your chest it was so big that extended all the way down and was wrapped around your spine....that was the first time they told us you had cancer. The day all of our lives would change forever. We kissed you goodbye while you slept on the bed and watched as they wheeled you into the operating room. We patiently waited for your surgery to be over...what a long wait that was. Your recovery was rough and I vividly remember your "melt downs" but smile when I think of all the M&Ms you ate and how you wrapped all the hospital staff around your little finger! What great news we all received when the Neurosurgeon told us you would be able to walk again! Then when we saw you take those first steps again we all marveled at your strength. The second surgery to get the rest of the tumor out of your chest didn't go well at all. Mom and I went back to the hotel room so each of us could take a needed shower. We figured we had at least 4 or 5 hours before you would be out, but that wasn't the case. The phone rang and it was Grandma on the other end telling us to hurry back to the hospital. I began to cry and went and got your mom and we raced back to the hospital. The news was devastating, they couldn't get the tumor out and the surgeons closed you right back up. The Chemo rounds were hard on you...the mouth sores, the pain, the nausea, the fevers. But even through all that you managed to give us some smiles and made us laugh! You made the hospital your second home and you dealt with it well. Better then any of us thought possible. All of us were anxiously awaiting your surgery at Sloan with Dr LaQuaglia. Uncle Dylan and I, Grandma and Grandpa Borriello and your mom and dad hung out in the waiting room waiting for updates from the operating room, friends on the internet waited too. That was such a long day and I was so scared the doctors were going to come out and tell us they couldn't get the rest of your tumor out. I wasn't sure what to pray for...thinking it was way to much to ask that your nasty, ugly tumor be taken out completely, for you not to be paralyzed forever, and for you to survive the surgery.....but I asked for them all and you got them ALL! You physically recovered and I watched your little body mend once again. You went through 2 more rounds of intense chemo and then your stem cell transplant. That was really hard on all of us because we couldn't see you during your hospital stay. Your mom would give me updates over the phone and I would pass the info onto all of our friends and family but I felt so isolated and disconnected from you and really hated not being able to give you a hug, see your sweet face or hear your voice. I was thrilled when you came home and felt such a relief when I saw you again for the first time in what seemed like months and months. The radiation treatments went by fast and now you are doing the antibody treatments. Any time I feel scared or overwhelmed through all of this Lauren, I just go and see you and all those feelings go away. I always feel that I am supposed to be the one giving you strength yet it's always the other way around! You reassure me all the time!
Now we begin the second part of your journey. Your cancer is all gone now, and you are in the NED stage. These antibody treatments and the accutane I pray will keep you NED forever. One day you will be able to read all these journals yourself. I wonder if you will remember any of this journey or know how many people's hearts you have touched. There are no words to express the amount of love I have for you. To say that I love you with all my heart and soul doesn't seem to describe it enough. You are the most courageous person I have ever known and I can only hope to be as brave as you one day. All this from a little 2 year old girl...amazing absolutely amazing. You are my HERO! Loves and Hugs to you Lauren.
Love Always,
Aunt Nean
Thursday February 22, 2001 - Lauren's last checkup went great. She did lose a little more weight but other than that looks good! Most importantly she got the ok to eat raspberries and grapes again. She was soooo happy!!
Lauren had her HAMA test done on Monday 2/19 which was then
Fed ex-ed to Sloan where it was run yesterday. If she is HAMA neg (which is what we want), we start the Gm-csf shots that night and head to Sloan Monday night (2/26) to start the next two week round of 3F8 antibodies.
We're still waiting on the results of an immune function test (PHA) that was pulled at the end of the last round. This will tell us how much Lauren's immune system has recovered and how close to normal it is. Unfortunately this test takes 2 -3 weeks to complete so we won't have the results til we go in for the next round. Based on those results we'll talk about when to start checking her vaccine titers and doing revaccinations.
Lauren made an unexpected trip to the Valerie Center on Friday 2/16 because she woke up that morning with a fever of 102 and she's been very cranky and tired lately. Deb was afraid she had caught the nasty flu bug that Timmy had just gotten over. (Poor Timmy was sick for a week with 103 - 105 temp.) Because she still has a central line they had to draw blood cultures to make sure she didn't have a bacterial/fungal infection. Happy to say she doesn't. The fever went away as fast as it came and it looks like she just has a cold.
Even a cold virus is enough to drop her counts though. When Lauren went in Monday for the Hama test her hemoglobin was down to 7.8 and her ANC, which was 2600 (normal) on Friday, it was down to 1000. She went in for a blood transfusion on Tuesday and her ANC was down to 840. Hopefully it won't go down much further. (Once it's below 500 she's considered neutropenic).
Deb is hoping that the blood she got will help take care of the crankies and up her energy level a little.
The new foods of the month are: McDonalds hamburgers (no bun) dipped in ketchup, tostitos chips and wheat thins. Yum Yum! oh and of course raspberries!
Lauren got the go ahead from Dr. Kline to go to an indoor dog show this Saturday, so she will be ring side for Molson's first match show and I am sure we will all have a lot of fun!!
Loves and Hugs :o)
