I have been so busy answering phone calls with concerns about Kelly, we have decided to create a family website so we can keep everyone updated on our family, and most of all, what is happening with Kelly. What a journey she is on.
After a seizure in April, she was admitted to Children's Hospital of Orange County (CHOC) where a small mass was found in her brain. Her doctor recommended that we watch it instead of trying to biopsy it immediately since it was located about two inches into her brain. None of the several doctors that looked at her MRI thought it looked dangerous. Then in June she began having severe headaches and vision problems. She was admitted into CHOC again for tests. Her pediatric neurosurgeon found that the "mass" had grown since her first MRI and now felt he needed to do a biopsy to see what it was. The biopsy showed abnormal cells, so he scheduled her for surgery to remove the tumor, which they were calling a Grade 2 Glioma (they were no longer calling it a "mass"). Brain tumors are graded 1 through 4, with 4 being the most dangerous, fast growing, aggressive type of cancer. So we thought, OK, we can deal with this, it could be much worse. Her doctor recommended that Kevin (who has been working with the Marines on active duty in Hawaii) should come home for this next surgery, as there were certain risks involved since he had to go through her brain to get to the tumor, but we all agreed that the best thing for Kelly was to get this tumor out of her brain.
On July 16, 2007, she had surgery where her pediatric neurosurgeon successfully removed the tumor. He was thrilled with the results of the surgery and the MRI the next day showed just what he wanted to see - a successful total resection (removal) of the tumor. So we were feeling pretty relieved one day post surgery. All that changed the next morning, however. I knew something was not right when they asked if Kevin could come in so the oncologist could talk to both of us. Since Kevin was in meetings at Camp Pendleton, which is pretty far from the hospital in Orange, I met with Kelly's doctors and was given bad news. The pathology report for the tumor that was removed now showed it to be a grade 4 glioblastoma multiforme tumor. This was much worse than the pathology report from the biopsy, but it was much more accurate because they could look at the entire tumor now instead of just the small samples they used for the biopsy. This was the worst kind of tumor she could have. Because grade 4 tumors are so aggressive and fast growing, they know there are very small cancer cells left in her brain that left untreated, will grow into tumors. There is no choice but to treat her very aggressively now.
After her brain has another week to heal from her surgery, she will begin radiation therapy and chemotherapy simultaneously. They are hoping that doing both therapies together will be more successful. She will be part of a clinical trial study. Fortunately, her chemotherapy will be oral medication that she can take at home. I will be driving her to Orange 5 days a week for her radiation, plus one day a week she will be seen by her oncologist and have labs drawn to keep a close eye on her health. We feel very fortunate that Kelly has had such good care so far. We have had such a good experience with the whole neuroscience team at CHOC.
She is in for a rough ride this next year though. She will not be attending her high school in the fall, instead she'll be home tutored. Her doctors don't want her exposed to all the other kids since the radiation and chemotherapy is going to damage her white blood cells and weaken her immune system. We have to watch her carefully for any sign of illness or infection, which can be extremely serious for a cancer patient. Plus, she is just going to feel lousy.
We appreciate everyone's concerns, but right now it is overwhelming to keep answering phone calls. It still is hard to talk about all the time, as this news is still sinking in. Amazing how your life can change dramatically so fast. We would love to hear from you by posting on this website or emailing us. We will keep everyone updated by posting on this website.
50 comments:
I would love to help (do your Trader Joe's shopping - just email me a list, pick up dinner for you or whatever you need. My cell is 922-9578 or home 859-3689. Please call me if you need anything.
I will keep you in my thoughts and prayers.
Kelley
Kathy,
Thanks for the updates. Everyone is praying for Kelly and the entire family! We're all here for you for whatever you need. Kelly is an amazingly strong young lady and she'll get through this stronger and better.
Sending you warm wishes and lots of love and prayers!!
Lori
Hey Kelly,
Are you going to go bald like me?
(wink). That's ok, it grows back. I'm hoping for curly (and not grey);0}~ I'm so glad you have your usual happy positive attitude. It will make a big difference. I made fun of all the junk I had to do. You should try it. {but I wouldn't suggest you use the language I use during some of those procedures, Mom and Dad might not be too happy with you doing that. giggle) I'm really glad you don't have to have the chemo I had too. 5 hour chemo is the pits. (blah!) And you and I can compare radiology stories, I won't start for about a week. I get to do mine at Mission.
Yente says "Hang Strong - Ovay!"
Hugs Hugs and more Hugs!!!!
Love ya,
The Queen "Ms.P" Caroline
Dear Kelly,
You book so beautiful and adorable as usual in your photo at the hospital. You have been in our prayers since hearing about your scheduled surgery and will continue to be in our daily prayers. Please tell your mom to call us at 766-0159 if there is anything we can do to help out.
Love,
Shelby Preusse
The Preusse Family
Rick, Shelby, Harrison, Carly, Carson and Baby Christian (born 6/28)
Thank you for the update. I've been resisting the urge to call. I understand how that goes.
Please do not hesitate to give me a call if there is anything I can do for you (pick up kids from school, etc.,)
A Big Bear Hug to all of you, especially Kelly,
Love ya all,
Peggy
Hi Kelly,
I'm glad you have the blog so that I can read what's up to date about you. Your a fun person to talk to so let me know when I can visit you. You are in my prayers.
Your friend,
Bradley :)
Dear Kelly,
Greetings from Poli, your mom's stamping friend. I'm up here at Gold Arrow Camp in the Sierras.
I am glad to hear you are surrounded by family and friends - a therapy dog - that's awesome.
I wish I was closer to home so I can help out, but know you are in the thoughts & prayers of a group of people you've never met.
I'll keep watching for postings.
All the best,
Poli
heyy kelley! this is amber davar
i love you, and so does my family,
i am praying for you
so is reef and my friends sarah and jen
we love you alot!
my mom loves you too and so does my sister desi and brother brandon and my dad
and ofcorse my doggy emmy
well you will always be in my heart and i will be praying for you nonstop.
well if you need anything you just tell me and i'll do it for you right away!
well call me anytime you need someone 2 talk to my number is 949 -888-8777
or call my mother cell that is 949-466-4541
hello, this is ryan maganini ( not joey, i have to use his google account :P) anyways hope you're doing fine. Here are some videos i found that you might like :D
very cool honda commercial
http://youtube.com/watch?v=uyN9y0BEMqc
america's funniest videos
http://www.youtube.com/watch?v=nMiaj3UcyI8
-Ryan
hey kelly its lisa boivin.Just want to you to know im praying 4 you get better soon thats an order got it?!!!sara, dad, and my mom say hi and they hope you get better. email me when you feel up to it my email is isports1234@aim.com
get better now and ill talk to you later bye!!!!
hi kelly its jessie armes. im so sorry that your summer has been rough. im really glad you have a blog site. its really cool and you look great in the pictures. now that you can go swimming you should come over to my house or we could meet up at the rec center. our pool has been getting worked on for the past week so we have been going there pretty often. tell your parents to take you to my aunts beach condo in san clemente that my mom sent an email to your mom about. we just went there and its a lot of fun. megan will send a blog when shes feeling better. she had all four wisdom teeth pulled out so shes been sleeping a lot and really swollen in her face. email me when you have a chance jma93@cox.net or call me anytime 7022108. tell your family hi. we think about you often and pray for you every night. talk to you soon.
jessie armes
Hey Kelly!
I'm not sure if you remember me, but we had a few classes together during jr high. I heard your story and you are such a trooper through these rough times. I can't imagine how hard this must be for you and I'm really glad you have Kaitlyn to help you through your treatment. If you have some time, give me a call and we can hang out.
Kate Cardone
Hey Kelly!
It's Megan Armes. When I heard about what was going on I was shocked that this could happen to such a sweet girl like you. I know that we didn't hang out that much except for CCD and Wednesday carpool. You're in all of my prayers.
Love,
Megan
Hi Kelly,
This is Chief Eagle Eyes - The entire Garshnick Tepee is thinking about you. You are a very special girl and we know you will pull through this. Keep an eye on the mail we have sent you somthing. Both Prancing Pumkin(Britto), Wandering Star (Abby) say hi.
Lots of love and prayers
Chief Eagle Eyes
Diana said...
You are in my prayers daily...may you be encouraged knowing that there are so many praying for a speedy recovery. You are in excellent hands with your medical staff for God has ordained them..may God comfort and encourage your hearts today...
Diana from South Hills Church, Corona
Dear Kelly,
Your smile is amazing, you are so filled with Gods love and the Holy Spirit you can see it through your photo. I just want to let you know that our family is praying for you and I know that our prayers for you will be answered. My son Danny fell 2 years ago and broke the bone that protects his spinal chord and his brain stem in 3 places. They called it the Cristopher Reeves injury (Superman). Danny's Dad and I began to pray over him as he lay in the emergency room bed. At this point we did not know if he was able to walk or talk or even smile again. I knew God had a master plan for him just as he has for you. Danny is fully recovered and you will be too. Stay in the highest spirits never give up on God and he will prove his faithfulness. We would love to come visit you and hand out and have pizza with you. call us if you are up to it 951-737-1432 All our love and prayers to your beautiful little face.
Love Kelly, Dan Sr, Dan Jr and Haley Lozoya.
Hi,
My name is Yolanda Galvez i am an alumni of Arts-X-Press and worked as a counselor too. I ran across Kelly's story today as i was reading the Arts-x-Press blog. My mother went through the same tye of brain tumor and i know wat it took out of her, so kelly and family i wish you the best, i hope that things come out as they should, my prayers go out to you and your family and hope you get well soon!
<3 yolanda galvez
everyone goes through shit. shit happens. deal with it.
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