Meet Survivor, John Michael!

I told you in honor of Childhood Cancer Awareness month and our "Light The Night" walk I was going to introduce you to some of our young leukemia/lymphoma friends. I had to do John Michael first because his story is as amazing as he is!!!

This is John Michael. His mom is our friend, Kim. I met Kim a couple of days after Cora was diagnosed. She was a volunteer for CURE Childhood Cancer at the time and she came to visit newly diagnosed patients. She has since started her own not for profit here in Savannah called, Hope For Savannah.http://www.hopeforsavannah.com/ We love Kim, she's awesome and we plan to do lots of work with her in the future. Anyway, here's John Michael's story in his own words.

"I was diagnosed with Acute Myloid Leukemia (AML) on January 5, 2005 when I was thirteen. Although I had very few symptoms, 95% of my bone marrow was malignant cancer. I was hospitalized the next day for my first round of chemotherapy. I stayed for over a month fighting the side effects of my various chemo drugs. My next bone marrow aspiration showed me to be cancer free! Because AML is so aggressive, we had lots more to do before the battle was over to keep it from coming back. I had three more rounds of chemo to wipe out all of the marrow (even the healthy) in my bones, to prepare for a bone marrow transplant (BMT). My sister turned out to be a good enough match to donate her bone marrow. After her surgery, where two surgeons removed marrow from 100 different places along her hip bones, I was transfused with this life saving blood producer. 10 days later I was in ICU fighting for my life. I had developed several life threatening side effects from the chemo and BMT, including Graft versus Host Disease (GvHD), blindness, diabetes, VOD (liver failure), and Avascular Neucrosis (AVN). I have had almost 200 blood and platelet transfusions, taken more pills than we can count, had two central lines and a portacath, spent more time in the hospital than at home the year of my diagnosis, had 7 bone marrow aspirations, drove to Atlanta from my home, 4 hours away, once a week, for several months, lived in Atlanta for 3 months during my BMT, missed being in school full-time for almost two years after my diagnosis, had two hip surgeries to help my AVN, repeated my childhood immunizations, and been isolated from friends and family for long periods of time.

Through all this I have grown closer to my family and to God. I know He has a purpose for my life. Cancer is not the title to the book of my life, it is merely a chapter. Even though I have been lucky to become cancer free, lots of kids every year don’t make it. We have to fight for the day when there is a CURE for every kid diagnosed with cancer. We also have to aggressively pursue CURES with less side effects. I have been cancer free for almost 2 ½ years!"

To me, John Michael is living proof that faith and prayer combined with modern medicine and excellent prayer can work wonders! John Michael really really went through it! He was a teenager at the time of diagnosis which is difficult for anyone. He has undergone not only the stem cell transplant procedure and all that came after that, but just this past year he had his 2nd hip surgery because of the toxic effects of chemotherapy. John Michael is an amazing young man who gives back every chance he gets. He graduated from high school last May and began his freshman year at Georgia Southern University just a few weeks ago. Talk about overcoming!!! Yay, John Michael! Thanks for being such an inspiration!!!

If you'd like more details about John Michael's journey visit his caringbridge site at http://www.caringbridge.org/ga/johnmichael/

National Childhood Cancer Awareness Month

September is National Childhood Cancer Awareness Month. We are so grateful and thankful for all the many research and support organizations that have refined and improved treatment over the years. It's so hard to decide which organizations to support and contribute to because there are SO many that have done so much for us. This year we've decided to raise funds for The Leukemia/Lymphoma Society. We're participating in our local "Light The Night Walk" on Friday, October 15th at Forsyth Park. We will all walk with illuminated balloons to raise awareness for the cause. Cora will have a special white balloon because she IS A SURVIVOR!!! We decided to support LLS this year because treatment for Leukemia specifically has come so far in the last twenty years, BUT we know there's a long way to go! We want every patient with a leukemia diagnosis of any type to do as well as Cora has done.

So what I've decided to do this month on our blog is introduce you to some of our "cancer friends" who have a leukemia or lymphoma diagnoses. I figure all our friends and family know Cora's story so well they could retell it themselves, so I thought I'd share more stories of young survivors who have directly benefitted from advances in treatment! I can't wait for all of you to read about these awesome kids!!! If you'd like to join us in supporting LLS you can make a donation in the box to the right to for "Cora's Light The Night Walk" or you can register to walk with us at www.lightthenight.org We'd love to have some friends join us! It's a party in the park before and after the walk!!!

Clinic Update

Hip Hip Hooray! Hip Hip Hooray! Cora's counts are up!!! Not a ton, but a bit! Enough for Dr. G to give her the OK to go to school on Tuesday! Her ANC was up from 735 to 1375! But her white count is still only 2.5 so she will go to school, and bathe in sanitizer when she gets home. She did great. She got vincristine through her port and checked out fine. Here she is with one of her two favorite nurses in the world, Melissa! We love you, Melissa!

First Day of School for Cade

We had very mixed emotions about the first day of school this year. Cade has been as SCPS for the past two years. Because I taught there for six years the staff, students, and parents there were like family! But realistically, one teaching and coaching salary doesn't cover a housepayment, feeding a family of 5, medical bills, yada,yada,yada, and private school tuition. Something had to give, and unfortunately it was Cade's tuition payment. But our school district has implemented some very good magnet programs in the last few years. Many private school kids have been pulling and trying these various magnet programs, so we decided to give it a shot. There are a limited number of spaces and all the programs are different, so I spent lots of time last spring looking at options and having Cade tested for each of these. He ended up getting a spot at Heard Elementary's Advanced Learning Academy. It's very different going from a school where everyone's known you since birth to one where you know only a handful of boys. (AND BOY WERE WE THANKFUL FOR THAT HANDFUL YESTERDAY!!!) He has two of his good buddies in his class.
I could tell he was really nervous. He gets hyper and talks more than usual (if you can imagine that) when he's nervous. He has a very sweet teacher and went right in and sat down and told me good bye. His Kindergarten class last year was half day, so it seemed to take an eternity for 3:15 to get here so we could go pick him up.
He liked it, I think. Cade's so hard to read. He said, "I like it and he was all smiles." But then as he retold the entire day he gave me an enormous list of negatives and prepared me for the fact that "he doesn't know the rules of this school, so please prepare myself and daddy for the fact that he may get in trouble."
His complaints included things like "there were so many people on the playground I couldn't find my friends." "I have 23 kids in my class (last year he had 9) and it took so long to call the names of the kids out that I almost fell asleep while the teacher was taking attendance." and "I can't remember where anything is and I need a map to get around that place."
So I think it may take a month or so for him to really feel comfortable and make more friends, but I think he's going to be challenged and I feel certain that he's in good hands. We'll keep you updated!

1986

OK I'm showing my age here. What 1986 film had the one liner shown on Clara's pjs for tonight???? (no gran and pop you don't get to guess!)
Let's have a little contest to see who can get it correct first!!!

PRUNES!

Cora fed Clara breakfast today!

Big Girl

Look at our big girl baby!
She now has 1 tooth poking through.
She can say "hi" on command!
And most importantly, she can play pirates!!!

Cora Clinic Update

We went to clinic yesterday to get Cora's counts checked. Two weeks ago her ANC (absolute neutrophil count) had dropped to 500. During chemo they like to see patients have an ANC of around 1500. The doctor took her off of all of her oral meds for two weeks. We went back yesterday to recheck her ANC it had come up a little and was 735. They put her back on her oral meds but at 50 % of her normal dosage. The doctor still didn't seem super concerned and saw nothing alarming in her blood work, she explained it once again as her bone marrow being "tired." It just keeps producing and producing and then getting killed by the chemotherapy so her bone marrow just isn't producing as quickly.

As for the neuropathy she has been experiencing, the 3 oncologists conferenced on that. Cora is entered in a clinical trial for her chemotherapy. The trial states that the dosage of Vincristine (the drug causing neuropathy) cannot be reduced unless the child cannot walk unassisted. So in other words, we're supposed to wait until she stops walking all together to change anything. So her doctors suggested that we keep a very close eye on the leg pain. If it gets bad enough we'll pull her out of the trial and change the dosage. But it has actually seemed a bit better lately. And it hasn't slowed her down at all. Her doctors haven't lead us wrong even once, they totally have her best interest in mind, so we're going to do what they think is best for now.

Me as her very impatient, very worried, very human mommy is totally frustrated on many levels. I'm frustrated that this nasty chemo is messing her up. I'm frustrated that they restarted the "count lowering meds" when her counts are already low. I'm frustrated that my little girl feels puny and is grumpy ALL the time! I'm frustrated by not knowing how to deal with her naughty behavior even though I know what's causing it! And I'm frustrated that this is all happening right now right when school is about to start for her! (btw...she won't go to school with no immune system.) I am sick to death of chemo as is Cora. I LONG for her to be "normal" again. My patience dwindles by the day.

BUT... We can make it!!! We're almost finished! 5 months to go!!! 5 months is NOT long! I am trusting God, trusting the doctors, and TRYING to lay my worries aside. I know this could be much worse, but Cora's bone marrow and her mommy aren't going to last much longer! One day I will look back and know this was just "part" of her story. The part that proves truly what a strong little girl she is.

Cora is SO excited about starting school and dance. Please help us by praying that her counts will continue to come up so that she can start with her class. She'll be so sad if she has to wait! Luckily she has another great teacher this year who I know will be glad to work with us on everything! We appreciate everyone's calls yesterday to check on her. We need our sweet friends and family more than you'll ever know!
Hugs to you all!

Girls Weekend

Our boys went to Atlanta this weekend to help Rob's parents move some furniture and catch a Braves game. We missed them dearly, but had lots of fun on our girls weekend! We ate pizza at the pool Friday night with Aunt Lauren and lots of our IOH friends. Then Saturday we went to the park, visited the farmer's marked and picked up some yummy fresh produce, made our peaches and blueberries into cobbler, watched movies, ate popcorn, and played games! I love my sweet girls!!!

Princess Ballet Camp

This past week Cora and a few little buddies attended "Princess Ballet Camp." And just for the record, no this camp was not created specifically for Cora, but truly the only way it could have been more perfect was if it were called "Princess Ballet Gymnast Cheerleader 'pretend you're a teenager' Camp." They had 2 sweet teenage teachers, met a different Disney princess each day, did ballet, did gymnastics, got manicures and facials (Cade asked if they put pickels on her eyes!) and most importantly ANY DRESS UP CLOTHES were proper attire. The wardrobe choices went something like this....


Day 1
Day 2

Day 3

Day 4

Day 5

And yes, we still could've worn a different ball gown each day if camp had lasted a month!

i'm speechless...

Behavior Managment Plan

As summer nears its close, boredom has set in with my kiddos. They have been toted from one fun place to the next all summer long and that has slowed down, but we've still got a couple of weeks before school starts. They are tired of their zillions of toys, it's too hot for outside, and I am D-O-N-E letting them watch tv all afternoon! They fight nonstop and we've had enough "family time" for 2 years. So I've shifted gears. I felt like all I was doing was nagging and giving orders and they weren't responding, so I'm revising our "behavior management plan." (you can take the teacher out of the classroom, but you can't take the classroom out of the teacher.) I'm rereading a book I read a few years ago, How To Discipline your kids without losing their love and respect and trying to reward the good behaviors more than I punish the bad! And just between you and me, some days it's pretty tough to find things to reward Cora for! I just needed a good reward for her, I don't like rewarding her with food or toys, she doesn't really get the whole money thing yet, and there's not a privledge you can offer that will get that girl to clean her room, but I found it the one thing she'll do anything for....(paper crowns)
(yes, that says, "the trying really hard to follow directions award." She'll do almost anything for one of these crowns. If only I would have figured this out years ago!




look who else earned a crown!

Clara's Half Birthday Update

Today is my half birthday! Yep, that's right I'm already 6 months old!!! And boy am I an exciting little girl! I can do all kinds of new things and I've grown a ton! I don't have my six month check up for a couple of weeks, so we're not sure about how much I've grown, but I am growing out of my 3-6 month clothes right on time!!! Here's what's been going on with me this month!

- I sleep much better at night! I go to sleep around 8 and mama wakes me up and gives me a bottle around 11. (i don't think she really liked me waking at 2:30 and demanding one then!) After eating at 11 I'll sleep all the way until around 7 am. Mama will take that!

- I eat breakfast and dinner. I'm eating all sorts of organic baby foods. I don't really like peaches (which is strange for a georgia girl!) or squash, but everything else is great! I get really messy when I eat. Mama says feeding me is like feeding one of those clown punching bags. I move all around and lean over and grab things, and put my head on my tray and I am a wiggle worm! Take a look at what I look like when I finish a meal....

Then when I'm finished, Leia cleans me first, and the bath tub cleans me second. Leia loves when I eat....
(I know, gross, huh? Can you believe my mom and dad let that go on???)

- I am a very silly girl these days. I LOVE Cade and Cora. They are very funny and they make me laugh and laugh and I love it! I even like a little rough play with them! I can handle it! I smile and laugh at everyone who talks to me! The only thing you have to do is say, "hi!" and I'm your friend! Oh, and Leia, I LOVE THAT DOG! I cannot get enough of her. Her ears are SO pointy and fun to pull and luckily she's a great sport about it. She's sweet to me.

- I am a wiggler. I love to jump in my doorway jumper. Boy can I make that thing go! And I love to lay on the floor. No more laying still for me. Once I'm down I'm rolling and scooting all over the place. Sometimes I even get stuck places like this...

I can even almost get on all 4s and rock back and forth. Mom better buckle up, cause once I'm mobile things are gonna change around here!

So that's 6 months progress in a nutshell! Stay tuned to see what I get into next!!!

just a normal day at the garola house!

Chemo Update

Today was a clinic day. A big clinic day! She had a scheduled lumbar puncture, chemo injection in the spine, and chemo thru her port. She for the first time ever REALLY, REALLY, threw a fit about going. She knew she couldn't eat prior to her visit and that always makes her mad, and rightly so. Today she refused to get dressed, said I was, "SO SO MEAN FOR MAKING HER GO TO CLINIC" and cried. I felt bad for her. It truly stinks and the older she is the more she "gets that!" We got there and she didn't want to talk to anyone. She just sat on my lap and fell asleep, which is strange because she does love seeing and chatting with her nurses. She had her LP and chemo, followed by a donut and juice. We chatted with the doctor and waited for her counts. Her counts were surprisingly low. Her ANC was 550 (normal on chemo is 1500) and her white count was 1.5 (normally on chemo it's 3.5 or 4). Dr. G took her off 2 of her nightly chemo pills for 2 weeks and wants to recheck her then. Too bad she couldn't have taken her off her NASTY grumpy steroid instead. Dr. G said that often after almost 2 years of chemotherapy the bone marrow just gets totally worn out and tired of fighting against these strong killer drugs and can sometimes slow down. We're trusting that a 2 week break from oral chemo will kick the bone marrow back in gear and get her counts back up.
The other thing that is EXTREMELY frustrating to me and certainly Cora is the side effects of this chemotherapy. Cora looks and acts like a normal little girl and sometimes I even forget what her little body has been through. With many types of cancer you go through chemo for 6-8 weeks or until the cancer appears to be gone and that's it. Most the time long term chemo effects are minimal. But ALL in children is treated with a standard protocol of 2 years and 2 months of chemo in little girls with B cell ALL. The GREAT news is that she only has 5 more treatments over 5 more months and that her prognosis after that is VERY promising. And I thank God every day for that!!! The BAD news is that she's experiencing some neuropathy (swelling of the nerves) which seems to be getting worse as a result of the drug Vincristine that she gets through her port once a month. Vincristine is a derivative of the poisonous Vinca plant that many of us have in our window boxes. Essentially we are allowing our daughter to have small doses of poison leaked into her blood and hoping and praying that it is doing it's job and killing the cancer cells. The problem is that the vincristine kills and affects other parts of the body. In Cora's case the vincristine is affecting the nerves in her legs. She's experiencing lots of tingling and leg pain not only right after chemo, but all the time. Her legs hurt, she stumbles more than the average 4 year old, and she can't climb and run as well as her peers. The other day she told me, "mommy it feels like someone is putting hot glue all over my foot, but they aren't." When I was explaining the leg pain to Dr. G she said it was common, but needed to be closely monitored. She said some kids describe it as a dragon breathing fire onto their legs and it is very painful. Dr. G said that normally when treatment ends this gradually goes away, but it can be long term or last for several years. She is going to conference with the other 2 oncologists about actually reducing Cora's dosage of vincristine for the next five months to try to prevent long term nerve damage. Cora has also complained of eye pain every once in awhile which can also be due to nerves. Please pray that her vision stays good and we can keep the neuropathy to a minimum. When I think about this lil girl being affected long term from this chemo it breaks my heart! I JUST WANT IT ALL TO GO AWAY AND BE OVER! She's done so well to this point, but it's so evident that her body is DONE with the drugs! Many doctors even think that the standard protocol for this type of ALL is an overkill. Sorry this is a gripey post, but I just hate that this is the only form of treatment that's successful! I'm convinced there's a better way out there and we will continue to do our part to help find it!!!

Cora and Marshall Sittin in A Tree

Cora has a boyfriend. He's been her boyfriend practically since birth. He's about 9 months older than her and his name is Marshall. Ever since Cora and Marshall can remember Marshall's older brother who is now 11 has taken great pleasure in telling Cora and Marshall they are boyfriend and girlfriend.

Cade and his best bud (marshall's middle brother) now add fuel to the boyfriend/girlfriend flame any chance they get! At this point, Marshall, who is really into playing with the big boys thinks he's pretty much destined for life to be "Cora's boyfriend." I'm not really sure he knows he actually has a choice in the matter. Cora on the other hand LOVES Marshall and often tells strangers on the street that she is "Marshall's girlfriend!"

But they are seriously cute. Marshall really does take care of Cora. He hides her eyes on the scary parts of Disney movies, and last week at Bible school he picked the green gummy bears out of the bag and said as he handed them to her, "here, Cowa, I got you all the green ones because they taste the best!"


So Today Cade was very irritated with Cora because he was about to go to swim practice and couldn't find his goggles. He was very sweet and let Cora borrow his "good goggles" the other day when she asked. No one's seen them since. Cade in a very irritated voice said, "CORA!!! WHERE ARE MY GOGGLES???"
Cora in an equally irritated voice replied, "I DON'T REMEMBER WHERE I PUT THEM!!!"
Cade said, "Geez Cora! You don't remember anything! Probably when you're married you won't even remember your husband's name!!!!"
Cora yells back," YES! I WILL CADE! HIS NAME IS MARSHALL!!!"

If only all of life's big decisions were that easy!!!