well its the last list - and wow this has been hard! I hope I didn't bore anyone. After this I may only blog once a week - just to rest! :)
ok - 30 things i wish for..........
1. time to myself to do some scrapbooking (more than 10 minutes here and 5 here)
2. time to myself to get my nails done (without taking Cole and his DS)
3. enough money to buy whatever I want (within reason) at DisneyWorld
4. to duplicate myself so I can do all these things and the copy of me can do the laundry, dishes.....etc
5. for Jason to always come up with a fabulous gift for mother's day, my birthday, our anniversary, etc..............with no hints from me, but always just what i want
6. for cole to have all the cool clothes he says he wants, along with a pair of heely's
7. to meet Kenny Chesney, talk with him about what his music has done for me
8. my cell phone battery to never die
9. a cell phone that has internet and holds music (does a blackberry do that??)
10. a laptop that doesn't shut down when it gets too hot
11. fountain drink/crushed ice machine
12. someone to cook wonderful meals for me
13. a never ending supply of diet dr pepper and caff. free diet dr pepper (cans, two liters, all of it)
14. a constant supply of all the clinique make-up i wear and love
15. yellow box flip flops in every color
16. a few more pairs of crocs in many colors
17. some really cute black flat shoes - dressy!!
18. a dress that looks fantastic on me
19. perfect shoes to match the fantastic dress
20. this may be TMI but perfect bras that fit the right way - i've had some issues since losing 45 pounds
21. to lose 15 more pounds
22. to be able to eat ice cream and still lose those 15 pounds
23. for Cole to always want to give me a hug and kiss
24. to always be able to take the perfect photo of cole - it's difficult
25. to learn how to do fantastic things with my camera
26. to never see a gecko again
27. to get a teaching job - at cole's school
28. for cole to not having any learning problems
29. for cole to have a wonderful teacher - every single school year - someone that gets him and teaches him the way he needs to learn
30. happiness - forever
lisa
Wednesday, April 30, 2008
Tuesday, April 29, 2008
30 things - photos around the house
Michelle - this one's for you!! :)
this is really dark - but the table was clean, so that's something you may not see again!
My cool retro metal signs. Each sign says "lets all go to the lobby and get a...." soda pop, hot dog or popcorn. 
My favorite Kitchen Aid appliance is hidden under my favorite RED Kitchen Aid Appliance cover.
The Alabama Corner of the room - a very nice platter featuring Denny Chimes, two cool wine glasses and a dip bowl too - oh and see those cute popcorn things? They are Yankee Candle - a tart warmer and votive holder - LOVE THEM!
This is a plexiglass wall hanging I made - the picture slides out from behind and can be replaced. This picture was of me and Cole on the way to his school's pirate party!
The dining room - we actually all sat at the table last night and tonight to eat together. That doesn't happen often enough!
Jason's chess set. We found these pieces unfinished about 9 years ago. We painted them and made the board ourselves. It could use a fresh coat of paint and better squares, but it's pretty cool. Jason and his brother played with it when they were here a few weeks ago.
a close up of the pieces
Saturday late afternoon activity - the BEST book and some ice cream!
This is in my sitting room (where I was enjoying that book pictured above). I have my nice fancy glasses. my granny's desert bowls, my granny's everyday drinking glasses, and some bowls from my nanny - all tucked inside my friend Michelle's china cabinet.
The view from the top of the stairs - the front entry way.
Cole's closet door and growth chart.
We hung Lightning McQueen from the ceiling.
My guest room - those are the flowers and ribbon from my wedding bouquet, our ring boxes and some bubbles from the reception!
My corner of the bedroom.
Photos on the dresser.
Our monogram over the bed.
My crosses.
Curtains that I've used in three places we've lived now - they match everywhere!
Cole's bathroom - yes, that Sally is a wall sticker that can be reused.
Lightning McQueen rug in the bathroom.
My giant clock in the living room, with some cool plaques from Hobby Lobby.
layouts i did this weekend
Cole in the living room tent we built Sunday
Blue and Magenta in the tent
Cole being silly in the floor - after we took the tent down.
Another shot of the kitchen.
ok - that's 27 photos - and since there's only one more day in April, will you forgive me for not doing 30??
lisa
ok -so i couldn't stand letting anyone down and came back to add three more things!!
Cole - crazy hat day at school today.
A cute banner I hung up on the fireplace - made from Jenni Bowlin's class at the event.
At any given time in our home - you will see this - a collection of things that Cole places where ever he likes - but usually all in a row. cars, backyardigan toys, nick jr toys, mickey mouse clubhouse characters - you name it - here they are, in a row!!
shew - now i feel better - 30 things!!
Monday, April 28, 2008
30 things I've blogged about
I just recently went back and added labels to my posts so here's a list of the top thirty things I've blogged about and how many times I blogged about them.
30 things (23)
cole (20)
scrapping (11)
cancer (7)
school (7)
alabama football (2)
american idol (1)
Anniversary (1)
birthdays (2)
blogging (2)
kenny chesney (4) - not nearly enough I think
moving (4)
sickness (4)
my studio (3)
paper rack (3)
scrap etc event (3)
friends (2)
Irish (2)
jason (2)
lisa (2)
photo a day (2)
small group (2)
caringbridge (1)
country music (1)
cousins (1)
junk food (1)
lottery winnings (1)
nice (1)
parenting (1)
parents (1)
So there you have it - a list about what I've blogged about. This is just too entertaining isn't it? I'll try to do better later!!
lisa
30 things (23)
cole (20)
scrapping (11)
cancer (7)
school (7)
alabama football (2)
american idol (1)
Anniversary (1)
birthdays (2)
blogging (2)
kenny chesney (4) - not nearly enough I think
moving (4)
sickness (4)
my studio (3)
paper rack (3)
scrap etc event (3)
friends (2)
Irish (2)
jason (2)
lisa (2)
photo a day (2)
small group (2)
caringbridge (1)
country music (1)
cousins (1)
junk food (1)
lottery winnings (1)
nice (1)
parenting (1)
parents (1)
So there you have it - a list about what I've blogged about. This is just too entertaining isn't it? I'll try to do better later!!
lisa
30 things about cancer
I started this post last week and have just now finished it. I know I'm a bit behind - what else is new. I now owe you 60 things I guess. I will try to post my 30 photos this evening and maybe another list today!!
This may be a mixed list - some good, some bad - yes there are some good things about going through something like this. Good lessons learned!
1. When your child is sick and you know he's sick and the doctor blows you off - stick with it - Mother's intuition is real.
2. Sometimes the odds are against you. (Cole's tumor is usually cancerous but some aren't so we were hoping his wouldn't be, even though the odds were so small)
3. Sometimes the odds are with you. (We were told if you were going to have a brain tumor, this is the one you want. We thought the doctor was crazy but then we met kids that had worse brain tumors - some are still here, some aren't. We really have been lucky)
4. When the doctor that knows everything about this type of cancer tells you something, you believe it - no matter how much you want to deny that it could happen to your child. (We still hold on to that denial just a bit, hoping Cole will be the child that beats the odds)
5. Bribery is a good thing when you have to change the dressing on your child's central line.
6. It's hard to say no to anything Cole could want when you experience something this traumatic and it was OK to spoil him!!
7. The families you meet on a cancer journey will always be important to you, even if you don't keep in touch that well - they were in the trenches with you and you love them for being supportive, even when their day was just as bad, or worse, than yours.
8. Your kid won't necessarily remember the bad stuff - the sticks, the physical therapy he cried over, but he'll remember the fun times - the games we played or pictures we drew everytime we were inpatient. Shouldn't we all live that way - remembering just the good times?
9. Your real family won't always understand what you're going through. Just deal with it. They aren't living it like you are - so learn to adjust to what they say or how they feel, don't wear your heart on your sleeve (i learned this the hard way). This is when you lean on your new cancer friends - they really get it.
10. Spread your story - talk about it. It helps in so many ways. It's still emotional, but it's healing for me to talk about it.
11. Remember that when you talk about it - others don't have the background knowledge you now have - others don't think any of it is funny. Be sensitive. I sometimes feel like we make light of situations but only because sometimes you have to laugh to keep from crying. We laughed a lot - and made lots of jokes along the way. Some will still have me holding my side laughing with tears in my eyes. Not everyone laughs when we say Cole is on HGH so he can play Major League Baseball when he grows up.
12. Other families need your information. I know I would like to know more about what other families are going through. The information is out there, you just have to find it - and I'm looking and have received great advice, and can maybe give some too!
13. Sometimes when you share your story you also have to remember you aren't as sensitive to it and you may make people cry (instead of laugh at the jokes) - remember that and try to be sensitive - we aren't so good at this part I realized recently.
14. People you don't even know will pray for you and your family when you are going through this - it's such a blessing so you have to pay it forward and pray for others that you don't really know either. We know those prayers carried us through this journey.
15. People will do things for you that will blow you away. Whether it's giving you money, gifts for Cole, whatever - you have to be thankful for it, don't try to make them not do it - it's there way of paying it forward maybe - it's a blessing they have to pass forward. Take it and do the same when you can.
16. I have learned that not every kid with medulloblastoma is like Cole. Just because someone else has a reoccurence, it doesn't mean Cole will. Although, we know it can happen - I have to remember not to stress myself out about it.
17. Everything that St. Jude says is like 100% true in my opinion. I don't think Dr. Gajjar could ever be wrong. If he told me Cole had gained twenty pounds even though my scale only showed four pounds - I'd believe that man. That's how wonderful St. Jude is!!!
18. Cole will stuggle for a long time, or forever, because he's had cancer.
19. Even if he struggles, there are definitely places where he'll exceed expectations. We have to figure those places out and encourage him. Even if it means buying a drum set and letting him bang away!!
20. He's not going to be a doctor.
21. He's not going to be a jock.
22. He'll be perfect to me though - no matter what he is when he grows up.
23. There was a reason why I wanted to be a teacher - I always thought it was to help other kids, maybe change one kid and reach them the way one of my teachers reached me. But, now I think it was really all about Cole.
24. There was a reason why Cole had cancer - God knows and I'm ok with NOT knowing.
25. It hurts when you see a child fight cancer.
26. When kids that are really young have cancer, they have no idea how hard their life may be later, and have no clue that they should be angry and mad - they usually will give you a smile and act like it's all ok. I think we adults could learn a lesson or two from them.
27. One day Cole may be embarrassed that his hair is so thin and he has an old man bald spot and a huge scar. I hope we'll know how to deal with that and he won't feel insecure about it. I hope he'll have a sense of humor about it maybe -whatever will help him cope.
28. One day I may say something to someone in Walmart that isn't nice. Cole rides in the buggy most of the time - it's easier for me. So his back is to people that are coming our way. This means people see the thing hair and bald spot. As they pass us, they will turn and look at Cole. They just have to see him to see why his hair looks like it does. This makes me angry. Especially when they then look at me and give me a sweet smile that means "oh bless his heart". It drives me crazy. Don't look at him that way and don't look at me that way. Just keep rolling by with your squeaky buggy and think to yourself - I'm not sure what happened to that sweet boy - but God please continue to bless him for the rest of his life. That would be a nice thing to do. I know it's hard not to look or stare - but geesh - grow up already. It's usually adults that do this - not little kids wondering what's wrong.
29. Educate children about cancer. I wish I'd been able to talk to Cole's class about cancer and about how sick he was and how great he's doing now. I think it would give them a little more understanding when Cole doesn't 'get' something, or when he's slower on the playground, etc. His classmates are great, but I wish I'd been able to talk to them about Cole a little. A few have asked questions and I've answered, but only a few. My fourth graders from last year asked questions so I had a little chat with them and told them all about it. Even brought pictures to show them how he looked then. I think it made them think a little and appreciate that they were healthy maybe. Or just be tolerant of people that are a little different. They were all so sweet to Cole.
30. Cancer sucks - there's no other way to put it. It changed our lives forever and nothing will ever be the same. The old Cole is gone and replaced by a different Cole - he's just as wonderful, but there are times when we miss things he could do before, or miss the idea of things he could have done without having cancer. We really wanted an Alabama football player. But, hey - if he follows his dreams of playing the drums, maybe he'll be in the band at Alabama. That's not so bad, is it? I think not!!
Lisa
This may be a mixed list - some good, some bad - yes there are some good things about going through something like this. Good lessons learned!
1. When your child is sick and you know he's sick and the doctor blows you off - stick with it - Mother's intuition is real.
2. Sometimes the odds are against you. (Cole's tumor is usually cancerous but some aren't so we were hoping his wouldn't be, even though the odds were so small)
3. Sometimes the odds are with you. (We were told if you were going to have a brain tumor, this is the one you want. We thought the doctor was crazy but then we met kids that had worse brain tumors - some are still here, some aren't. We really have been lucky)
4. When the doctor that knows everything about this type of cancer tells you something, you believe it - no matter how much you want to deny that it could happen to your child. (We still hold on to that denial just a bit, hoping Cole will be the child that beats the odds)
5. Bribery is a good thing when you have to change the dressing on your child's central line.
6. It's hard to say no to anything Cole could want when you experience something this traumatic and it was OK to spoil him!!
7. The families you meet on a cancer journey will always be important to you, even if you don't keep in touch that well - they were in the trenches with you and you love them for being supportive, even when their day was just as bad, or worse, than yours.
8. Your kid won't necessarily remember the bad stuff - the sticks, the physical therapy he cried over, but he'll remember the fun times - the games we played or pictures we drew everytime we were inpatient. Shouldn't we all live that way - remembering just the good times?
9. Your real family won't always understand what you're going through. Just deal with it. They aren't living it like you are - so learn to adjust to what they say or how they feel, don't wear your heart on your sleeve (i learned this the hard way). This is when you lean on your new cancer friends - they really get it.
10. Spread your story - talk about it. It helps in so many ways. It's still emotional, but it's healing for me to talk about it.
11. Remember that when you talk about it - others don't have the background knowledge you now have - others don't think any of it is funny. Be sensitive. I sometimes feel like we make light of situations but only because sometimes you have to laugh to keep from crying. We laughed a lot - and made lots of jokes along the way. Some will still have me holding my side laughing with tears in my eyes. Not everyone laughs when we say Cole is on HGH so he can play Major League Baseball when he grows up.
12. Other families need your information. I know I would like to know more about what other families are going through. The information is out there, you just have to find it - and I'm looking and have received great advice, and can maybe give some too!
13. Sometimes when you share your story you also have to remember you aren't as sensitive to it and you may make people cry (instead of laugh at the jokes) - remember that and try to be sensitive - we aren't so good at this part I realized recently.
14. People you don't even know will pray for you and your family when you are going through this - it's such a blessing so you have to pay it forward and pray for others that you don't really know either. We know those prayers carried us through this journey.
15. People will do things for you that will blow you away. Whether it's giving you money, gifts for Cole, whatever - you have to be thankful for it, don't try to make them not do it - it's there way of paying it forward maybe - it's a blessing they have to pass forward. Take it and do the same when you can.
16. I have learned that not every kid with medulloblastoma is like Cole. Just because someone else has a reoccurence, it doesn't mean Cole will. Although, we know it can happen - I have to remember not to stress myself out about it.
17. Everything that St. Jude says is like 100% true in my opinion. I don't think Dr. Gajjar could ever be wrong. If he told me Cole had gained twenty pounds even though my scale only showed four pounds - I'd believe that man. That's how wonderful St. Jude is!!!
18. Cole will stuggle for a long time, or forever, because he's had cancer.
19. Even if he struggles, there are definitely places where he'll exceed expectations. We have to figure those places out and encourage him. Even if it means buying a drum set and letting him bang away!!
20. He's not going to be a doctor.
21. He's not going to be a jock.
22. He'll be perfect to me though - no matter what he is when he grows up.
23. There was a reason why I wanted to be a teacher - I always thought it was to help other kids, maybe change one kid and reach them the way one of my teachers reached me. But, now I think it was really all about Cole.
24. There was a reason why Cole had cancer - God knows and I'm ok with NOT knowing.
25. It hurts when you see a child fight cancer.
26. When kids that are really young have cancer, they have no idea how hard their life may be later, and have no clue that they should be angry and mad - they usually will give you a smile and act like it's all ok. I think we adults could learn a lesson or two from them.
27. One day Cole may be embarrassed that his hair is so thin and he has an old man bald spot and a huge scar. I hope we'll know how to deal with that and he won't feel insecure about it. I hope he'll have a sense of humor about it maybe -whatever will help him cope.
28. One day I may say something to someone in Walmart that isn't nice. Cole rides in the buggy most of the time - it's easier for me. So his back is to people that are coming our way. This means people see the thing hair and bald spot. As they pass us, they will turn and look at Cole. They just have to see him to see why his hair looks like it does. This makes me angry. Especially when they then look at me and give me a sweet smile that means "oh bless his heart". It drives me crazy. Don't look at him that way and don't look at me that way. Just keep rolling by with your squeaky buggy and think to yourself - I'm not sure what happened to that sweet boy - but God please continue to bless him for the rest of his life. That would be a nice thing to do. I know it's hard not to look or stare - but geesh - grow up already. It's usually adults that do this - not little kids wondering what's wrong.
29. Educate children about cancer. I wish I'd been able to talk to Cole's class about cancer and about how sick he was and how great he's doing now. I think it would give them a little more understanding when Cole doesn't 'get' something, or when he's slower on the playground, etc. His classmates are great, but I wish I'd been able to talk to them about Cole a little. A few have asked questions and I've answered, but only a few. My fourth graders from last year asked questions so I had a little chat with them and told them all about it. Even brought pictures to show them how he looked then. I think it made them think a little and appreciate that they were healthy maybe. Or just be tolerant of people that are a little different. They were all so sweet to Cole.
30. Cancer sucks - there's no other way to put it. It changed our lives forever and nothing will ever be the same. The old Cole is gone and replaced by a different Cole - he's just as wonderful, but there are times when we miss things he could do before, or miss the idea of things he could have done without having cancer. We really wanted an Alabama football player. But, hey - if he follows his dreams of playing the drums, maybe he'll be in the band at Alabama. That's not so bad, is it? I think not!!
Lisa
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!!
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!!
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