Sunday, April 27, 2008

another random post

I had a visitor from cropaddict.com's message board and she didn't know Cole's story and I haven't shared it in great detail here - but maybe I should. I'm sure someone may stumble upon this and not know about Cole. So thanks Jenn for visiting - and here's the story........ (in a condensed version, of course)



In August of 2004, Cole was three and everything seemed to be just fine - he was interested in everything and really pretty smart. He was in daycare while I was in school full time. He started just randomly throwing up - no other symptoms, nothing else going on - and it was really random, sometimes in the morning, sometimes afternoon and then at bedtime. He would feel fine afterwards too - he'd want to eat, and that's strange! So this continued for several months while we went to the pediatrician and tried to figure it out. We went through acid reflux medicine and that made no difference (the doctor kept saying we needed to give it more time, but since I have acid reflux, I know it doesn't take more that a few weeks for the meds to really work) then he started having headaches while throwing up. This turned into 'abdominal migraines' or so the pediatrician said!! None of those meds made any difference either.



January 15th, we were at a birthday party for my nephew and first we thought Cole was being really clumsy - just coming so close to bumping into things!! And his left eye didn't look right, just a little crossed. The next day, it was worse. We called the dr. again - for the millioneth time!! He blew us off - again. Jason had taken Cole to the dr this time and just took him to work with him afterwards and the guys he worked with all said they could tell that Cole's eye was crossing. When he got tired, it got worse. Jason started calling around and found an eye doctor that had a cancellation the next day and could see Cole. While Cole was there he threw up again. The doctor wanted to wait two weeks to see what changes. So we did that, we returned in two weeks and again, Cole was throwing up andhad a headache while we were there. The doctor said we needed an MRI right away. After a hassel with the scheduling of the MRI, we ended up with the MRI two days later.



The MRI was miserable - the stay they gave Cole to put him to sleep just wasn't working - it took way longer than expected to get him to sleep. The MRI doctor came out to explain to us that we needed to sign consent for contrast, just in case but that they rarely had to do it. They only did it if they needed a better picture - it probably wouldn't happen. Well, it happened. We were sitting in the room with the MRI machine while the MRI was going on - and the technician came in and had this look on his face - we later joked with him that he had better work on his poker face - because we KNEW. We left after the MRI and Cole was so out of it. He wanted to eat, but was still so drowsy and needed to be on liquids for a while first. He wanted to go to the bookstore and play. He just thought everything was normal, even though he could barely stand up!! We were turning into our neighborhood and had a phone call from the pediatrician. This man didnt' even ask if we were home yet, or sitting down, or any of those things. He just said you have an appointment with a neurosurgeon at 2 and we suspect a brain tumor. Nothing to ease up into it - just said it. Jason almost took out a mailbox (or two). So there we had it - an answer - a brain tumor.



The next few hours were a blur as we waited for our appointment. We did go to the bookstore, and of course, called everyone. Jason's mom, dad and grandma were with us the whole morning, so that was a huge help. We sat at the bookstore around the Thomas table while Cole played and we just say - there was nothing to say, nothing to do - we just sat. We went on to the doctor's office and had to wait a while - quite a while. Since we were squeezed in and the doctor had been in surgery, we had to wait for over an hour. As soon as we met him, we just felt this huge relief - he was very to the point with us but kind at the same time. We found out we'd go in the next day for surgery and they would drain the excess fluid due to the tumor. The tumor would be removed three days later.

Everything went well in the hospital - the surgery was successful and they were able to complete remove the tumor. Cole had some nerve damage though and his left eye was a little worse - crossed much more than before the surgery. He also could barely use his left side. We knew that there would be lots of therapy in the future. The tumor was sent off to several labs to find out if it was cancerous or not. We were hoping it wasn't of course but the odds were against that. Cole developed an infection during this time and we ended up back in ICU and in the hospital for two weeks. During that time we waited to here the lab results - it took forever. Finally the surgeon came to us, not the oncologist - to tell us it was cancer. We would have to go through radiation and chemotherapy. No one from the hospital could tell us what the treatment would consist of, or when it would start - actually no one told us anything.

We made one phone call to St. Jude and pretty much had all our questions answered. We sat down with our family to discuss our options - go to St. Jude for treatment and be gone for 9 months, or stay here and wait to figure out what they can do for us. It seemed pretty simple - go to St. Jude. So we started making preparations for that. Cole would have to be transferred by ambulance since he still had IV antibiotics to receive. I followed in the van and Jason rode with Cole. We switched about half way and I finished the ride in the ambulance with Cole.

We got to St Jude and were really blown away. I remember thinking this hospital was huge and I would never remember how to find anything. It was so much more lively and colorful and kidfriendly than the hospital at home. We were amazed - really amazed. Cole had really gotten to the point that he was just scared to death of every nurse and doctor that came in the room - they came in so much and it seemed to always be another stick, more medicine - something that hurt him. St. Jude was totally different - his Nurse Practioner was fabulous - Miss Valerie was the best thing that happened to Cole. He let her completely examine him and he didn't fuss once - he didn't freak out or anything. She was so gentle with him and so sweet - and it never changed, all these times we've seen her, she's just as kind and sweet. Sadly, now she's not there but that's ok - we'll make it without her!!

Anyway - Cole would get a central line placed and would start radiation the next week. He went through 13 rounds of complete spine and head radiation then 18 rounds of pinpointed radiation to the tumor bed. This is the main reason we went with St. Jude - they could do something the other hospitals could not. They could radiate a much smaller spot and therefore lessen the after effects of radiation.

We had a four week break were we returned to Mobile. Then we headed back to Memphis for four rounds of high dose chemo followed by stem cell rescue which is similar to a bone marrow transplant. Cole went through each round fairly well with little complications. He learned to walk again during radiation and had some delays again during chemo. One of the chemo drugs caused joint pain so walking was not something he was willing to try. He spent lots of time crawling, scooting and in the stroller!!

He finished his last chemo treatment in September and we returned home in October. We headed back to Memphis to have his line removed in November and then we would start check ups every three months. We did that for close to two years and now we just go back every 6 months.

Cole went through lots of therapy at home - physical and occupational - and really got stronger and stronger. He started school on time and did realy well adjusting to that big change. He didn't have a lot of interactions with other kids while he was sick. He had some buddies at the hospital but we still didn't spend tons of time together playing - at least not during chemo. We pretty much kept to ourselves during that time. So he did pretty well adjusting. He made really good grades too. We started thyroid medicine during that first year of school. His thyroid is under active so he takes a little pill every day to help that out. That was not a big deal to him - he really just takes whatever we day and deals with it - he's an amazing kid.

We moved at the end of kindergarten back to Birmingham and got Cole registered at his new school. He also started human Growth Hormones and finally started to grow!! he's grown over four inches since then. We recently decided to hold Cole back and let him repeat first grade. He's made such progress but there are basics he's struggling with and that foundation is so important - we want to make sure he has everything he needs to move on and be successful in school.

So that's where we are now - three years later he's still cancer free. He can run and jump and play - although not as great as some kids his age, but great for him. He can read and write (although sometimes it's hard, but he doesn't give up). He looks forward to each check up at St. Jude - it's like a special treat to go there now - he loves it. He loves seeing Dr. Gajjar and visiting all the girlfriends he made (his therapist and nurses).

For me, it's bittersweet to go back. Each time, I remember the hard times and how so many of our young cancer friends are no longer here. Each time, I see more and more children who are fighting this fight against cancer. I love seeing the staff there and they say hello to me, ask how I've been and then realize this big kid is Cole - they are always so surprised. He's just so big now and strong - compared to the little guy they knew so well. The hospital has grown a lot since we started out there too - and that's amazing to see. It's sad that it's necessary but it's amazing to see that the generosity of others is helping to cure these children.

If you are ever looking for a worthwhile charity - this is the one. St. Jude is amazing. We never paid a dime for treatment - if our insurance didn't cover it - we didn't have to worry. We were given a place to stay that was furnished with all we could need. We were given groceries and entertainment provided by the city of Memphis. We were given HOPE - we were given LOVE. The hospital makes sure that you don't have any worries except taking care of your child. They help in so many ways. We will never be able to give back in the degree that they gave to us, but we will try.

You can give back too - you can donate money, or shop in their online gift shop - every dime helps. Anything you could do could cure a child - can you believe that? It could!!! Really. So if you want to look into ways to help - go to http://www.stjude.org/ and look for a way that suits you.

I'm not posting this so you'll donate money though - I just wanted to share our story. Cole is a survivor. He fought hard and there were many scary times for us. He doesn't remember the bad stuff though - he remembers his head being shaved, have a bandage that looked like a tail around his head. He remembers a few of his cancer friends and that's about it. One day we'll tell him the whole story - we give him bits and pieces now though. I hope he'll be as proud of himself as we are of him. I hope he'll do whatever he can to help cancer kids in the future. I hope he'll stay cancer free - forever!!!

Ok - it's not a list of thirty things, but jeez - it's close to the end of the month and I've just about run out of things to list. I know I owe you 60 things now - so maybe I'll get caught up later today. I've been taking pictures around the house so maybe we'll have a list of 30 pictures from my home!!

later, lisa

oh - i didn't proofread or spell check - sorry, it's something i'm so not good at!!

2 comments:

Michelle said...

Everytime I read this, I get teary-eyed. It is an amazing story. All my love to you, Jason and Cole.

gimmegodiva said...

I didn't know the whole story... thanks for sharing. I know it must be hard to talk about. So glad there was a happy ending to his story.... and prayers for keeping it that way!

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