This is the last one I'll share -
Finally we were told: it was cancer. Our surgeon stopped by this afternoon to tell us that news. He said we should expect to see the oncologist that evening, or over the weekend, and we could start planning treatment. Cancer is something you never ever think your child will get. Isn't it just for old people or smokers? Not your everyday average four year old. We had a lot of decisions to make. We had been told by so many people that St. Jude Children's Research Hospital was the best place to go. We were told by our local hospital that they could do anything St. Jude could do. What we were never told was what that was exactly. The oncologist never came to see us and tell us what our options were. We waited and waited. We mentioned this to the doctors who made morning rounds day after day. We met one who was very concerned about this and encouraged us to go over the oncologist head for answers. We eventually took this as a sign. This sign would be one more thing pointed us to our final desitination
We sat down with our family one night and asked everyone's opinion. We waited and listened to what everyone thought. I had already discussed at length leaving home and going somewhere else for treatment with on of the nurses who had done just that with her child years before. When it really came down to a decision - there wasn't one to be made. St Jude was the best at treating childhood cancer. As my dad said "why go to someone who can do the same as someone else, when you can go directly to the source?" So, that's what we did.
We made plans for someone to take care of our house and yard. We forwarded our mail to my parent's house. They very generously offered to take care of our bills so we could both go to Memphis and be there together with Cole. We were amazed at their generosity, as well as the kindness of strangers. So many people were doing things for us to lend their support.
Less than one month after finding out about the tumor, we dropped out of school, turned in our notice to our jobs and packed up our band new van with everything we thought we could need for 8 weeks and left town. We left our family and friends and headed into uncharted territory. What we would find was the best place in the world! We would find doctors and nurses who would love and care for Cole as if he were their own. We found friends that will last a life time. We found hope, courage, strength and community.
I wouldn't wish this experience on anyone in the world. I certainly wish this it had never happened to us, but looking back, I wouldn't give anything for the experiences we had during this time. The lessons learned will continue to educate us for the rest of our lives.
*****
Just wanted to add, at the time, our hospital in Mobile had one oncologist - only one. They hadn't had a brain tumor kid there in at least ten years. I feel like they did the best they could with what they had. The oncologist finally came to see us but it was the night before we were scheduled to be transported by ambulance, with the van following, to Memphis. Memphis will forever hold a large piece of my heart. The city loves those kids - there aren't tons of funny looks when you are wheeling through Target with your bald kid. No one stared when you quickly left a restaurant because your sweet bald baby boy just threw up on the table. Chick fil a would cook fresh chicken when Cole showed up. So many nice people cared for us there and loved Cole. One day I hope we can give back more than we've done so far. One day, I want to teach there and have Cole there volunteering and playing with kids. I want to be one of those people loving on those sweet babies, hanging out with the teens and painting the girls nails. I want to be there.
It's still a little sad when we go back for check ups - always worried if something will come back - always worried about test results. But it makes me happy at the same time, if that makes sense. We have friends that don't go for check ups because their babies earned their wings and are looking down on us now. I'm so very thankful that's not us, and I'll remember those babies forever.
We were lucky, blessed and fortunate. I'll never take that for granted!!!
Thanks for reading along - if you made it all the way through!!
lisa
Monday, February 18, 2013
Monday, February 11, 2013
February 11th and 13th, 2005 - we've come so far since then!
This is what I wrote about Cole's birthday, eight years ago.
Happy Birthday Cole! Finally we're in a regular room, things got much better for all of us. We were all sleeping in the same room, when we could sleep, that is. Somehow, Jason and I had been sleeping together in one of those tiny fold out chairs. Cole was able to get out of bed and ride around in a wagon or play in the playroom and eventually, was able to get down in the floor and play. There were improvements each day. But still we waited and waited to hear the results of the tumor.
In the meantime, several follow up MRI's were done to ensure that no cells remained. We were relieved to hear good results. It was indeed totally resected and there were no additional tumors anywhere else. We had the same technician each time that we had the first time. At this point, after surgery and once we knew the tumor was really gone, we were much more at ease and even able to tease the technician a little about working on his poker face. I can't imagine how hard it is for the medical staff to know things are bad and hide it from the patient and families.
While waiting for one MRI to finish up, I was talking with the surgeon in the hallway. We told him that, thanks to my dad, we had read about this new pinpoint radiation St. Jude was doing. It limits the amount of overall radiation to the brain. This is a huge development when you think about shooting something at your child's brain that could possibly harm his learning later in life. I recall the conversation ending with the doctor saying "you can't have your cake and eat it, too." This was his response when I told him that we expected Cole to develop, physically and cognitively, like any other child and that we would base our decisions for treatment on what would give us that result.
During this time, I was diligently searching for information and came across a message board for parents of children with brain tumors. They became my support system while we were in Mobile. Many moms told me who their doctors where and most suggested we get to St. Jude. We continued to have this in the back of our heads, but wanted to find out what the results were first. In the meantime, we contacted St. Jude, just to see what it was all about.
February 13th
We decided to have a huge birthday party for Cole today. We already had a cake my mom had made and all the things ready for his party at home. We just brought the celebration to our giant hospital room and celebrated away. Cole was able to sit with his Daddy and unwrap his gifts. We planned a Wiggly birthday party, but it quickly turned into a Thomas the Tank party. I think he ended up with every Thomas toy available in Mobile.
**** Cole's turning twelve today and eight years ago, I never gave a thought to what this day would look like. I'm hoping it's everything he wants it to be and more. I pray each of his days are always the best!
Lisa
Happy Birthday Cole! Finally we're in a regular room, things got much better for all of us. We were all sleeping in the same room, when we could sleep, that is. Somehow, Jason and I had been sleeping together in one of those tiny fold out chairs. Cole was able to get out of bed and ride around in a wagon or play in the playroom and eventually, was able to get down in the floor and play. There were improvements each day. But still we waited and waited to hear the results of the tumor.
In the meantime, several follow up MRI's were done to ensure that no cells remained. We were relieved to hear good results. It was indeed totally resected and there were no additional tumors anywhere else. We had the same technician each time that we had the first time. At this point, after surgery and once we knew the tumor was really gone, we were much more at ease and even able to tease the technician a little about working on his poker face. I can't imagine how hard it is for the medical staff to know things are bad and hide it from the patient and families.
While waiting for one MRI to finish up, I was talking with the surgeon in the hallway. We told him that, thanks to my dad, we had read about this new pinpoint radiation St. Jude was doing. It limits the amount of overall radiation to the brain. This is a huge development when you think about shooting something at your child's brain that could possibly harm his learning later in life. I recall the conversation ending with the doctor saying "you can't have your cake and eat it, too." This was his response when I told him that we expected Cole to develop, physically and cognitively, like any other child and that we would base our decisions for treatment on what would give us that result.
During this time, I was diligently searching for information and came across a message board for parents of children with brain tumors. They became my support system while we were in Mobile. Many moms told me who their doctors where and most suggested we get to St. Jude. We continued to have this in the back of our heads, but wanted to find out what the results were first. In the meantime, we contacted St. Jude, just to see what it was all about.
February 13th
We decided to have a huge birthday party for Cole today. We already had a cake my mom had made and all the things ready for his party at home. We just brought the celebration to our giant hospital room and celebrated away. Cole was able to sit with his Daddy and unwrap his gifts. We planned a Wiggly birthday party, but it quickly turned into a Thomas the Tank party. I think he ended up with every Thomas toy available in Mobile.
**** Cole's turning twelve today and eight years ago, I never gave a thought to what this day would look like. I'm hoping it's everything he wants it to be and more. I pray each of his days are always the best!
Lisa
Wednesday, February 6, 2013
February 6th, 2005 through the 9th
A little more coming at you...........
Just six days after brain surgery, Cole was sent home. I was scared to death. I didn't think he should be sent home yet. He was still of steroids and still having problems just turning his head. The doctor on call assured us that everything was ok and Cole would do better at home. So home we went.
Cole did seem to improve slowly over the next day or so. He was very swollen from steroids when we left the hospital and we saw improvements soon after being home. He even rolled over in his bed on his own. February 8th was Fat Tuesday. Cole celebrated it by sleeping, and sleeping and sleeping some more. One whole day. We would wake him up to eat and he would immediately fall right back to sleep. He had a low fever which the nurse said was ok and not a big deal.
The next morning, we woke up to a 105 temperature It was indeed a big deal now. We rushed to the emergency room. They determined Cole had an infection of some sort, possibly staff, and maybe meningitis. We were more scared at that moment than any other in the weeks before. We watched a doctor and nurse insert an IV in each of his little hands and proceed to do a spinal tap. Cole didn't even cry. He barely flinched for each needle. Later we realized what a miraculous thing that was. He's had so many spinal taps, or lumbar punctures since then that we lost count. Each time after that, he would have to be sedated for the procedure. It was very rare for a child to be awake during such a thing.
Once the antibiotics were flowing and the temperature was down, things got much better. Cole was back to his new self. He was trying to move around in the bed and talking and laughing. By that afternoon, we felt relief once again. We went back to ICU and would remain there for several more nights.
The pediatric oncologist visited with us many times and let us know that they sent tumor tissue to other hospitals for second and third opinions. We asked for a fourth - St Jude Children's Research Hospital. In this day of technology, you can't search for pediatric cancer on the internet and not find a link to this hospital, so we thought they should be checking on Cole, as well.
*** Those days seems so long, buy my thoughts about them just a year later were much shorter that I expected. I haven't read this is a very long time - but I'll never forget!!
Lisa
Just six days after brain surgery, Cole was sent home. I was scared to death. I didn't think he should be sent home yet. He was still of steroids and still having problems just turning his head. The doctor on call assured us that everything was ok and Cole would do better at home. So home we went.
Cole did seem to improve slowly over the next day or so. He was very swollen from steroids when we left the hospital and we saw improvements soon after being home. He even rolled over in his bed on his own. February 8th was Fat Tuesday. Cole celebrated it by sleeping, and sleeping and sleeping some more. One whole day. We would wake him up to eat and he would immediately fall right back to sleep. He had a low fever which the nurse said was ok and not a big deal.
The next morning, we woke up to a 105 temperature It was indeed a big deal now. We rushed to the emergency room. They determined Cole had an infection of some sort, possibly staff, and maybe meningitis. We were more scared at that moment than any other in the weeks before. We watched a doctor and nurse insert an IV in each of his little hands and proceed to do a spinal tap. Cole didn't even cry. He barely flinched for each needle. Later we realized what a miraculous thing that was. He's had so many spinal taps, or lumbar punctures since then that we lost count. Each time after that, he would have to be sedated for the procedure. It was very rare for a child to be awake during such a thing.
Once the antibiotics were flowing and the temperature was down, things got much better. Cole was back to his new self. He was trying to move around in the bed and talking and laughing. By that afternoon, we felt relief once again. We went back to ICU and would remain there for several more nights.
The pediatric oncologist visited with us many times and let us know that they sent tumor tissue to other hospitals for second and third opinions. We asked for a fourth - St Jude Children's Research Hospital. In this day of technology, you can't search for pediatric cancer on the internet and not find a link to this hospital, so we thought they should be checking on Cole, as well.
*** Those days seems so long, buy my thoughts about them just a year later were much shorter that I expected. I haven't read this is a very long time - but I'll never forget!!
Lisa
Tuesday, February 5, 2013
February 5th, 2005
A little more of Cole's journey - this is what I wrote about February 5th, eight years ago.
As a result of not being able to move around, Cole was very stiff. He would cry in pain when we tried to move him to his right side instead of the left he had been on for so long. Once we got him to lie on the right side, this helped the stiffness, but we noticed how weak the left side was now. This was nerve damage from the surgery.
Days later, we were moved out of ICU and into a small room on the regular floor. Unfortunately, we still had the baby crib though. A neurologist came to see us and talk about the future. His idea of Cole's future and ours didn't go well together. He was very discouraging. This was the first time we had every been faced with a doctor that told us so bluntly what to expect. We would later realize that he was giving us the worst case scenario and that wasn't acceptable to the three of us. Later, Cole would prove this to be true and he continued to fight so hard to be a typical little boy!
***I remember being so worried about Cole not ever being able to use his left hand again, being able to walk, etc. Later we were told to get used to a walker, or even a wheelchair. Well, Cole showed them!! Thank God for that!!
Lisa
As a result of not being able to move around, Cole was very stiff. He would cry in pain when we tried to move him to his right side instead of the left he had been on for so long. Once we got him to lie on the right side, this helped the stiffness, but we noticed how weak the left side was now. This was nerve damage from the surgery.
Days later, we were moved out of ICU and into a small room on the regular floor. Unfortunately, we still had the baby crib though. A neurologist came to see us and talk about the future. His idea of Cole's future and ours didn't go well together. He was very discouraging. This was the first time we had every been faced with a doctor that told us so bluntly what to expect. We would later realize that he was giving us the worst case scenario and that wasn't acceptable to the three of us. Later, Cole would prove this to be true and he continued to fight so hard to be a typical little boy!
***I remember being so worried about Cole not ever being able to use his left hand again, being able to walk, etc. Later we were told to get used to a walker, or even a wheelchair. Well, Cole showed them!! Thank God for that!!
Lisa
Thursday, January 31, 2013
January 31st, 2005
This is it - THE day!
We tried to keep Cole occupied with toys and treats and movies until surgery Monday morning. This is when his addiction to puzzles began. We had a few before this, but suddenly that's all he wanted to do. Each time someone left and returned for a visit, they had another puzzle. I think by the time we got out of the hospital in Mobile, we had about 40 puzzles.
Once the big day came, we didn't know what to expect. The hospital was wonderful to us. They had a very large room available for Jason and I, along with all our friends and family. We took Cole down for his surgery and waited for the team of nurses to take him back, once again. Just a few minutes before it was time for him to be taken back, he fell asleep. Our prayers were answered a second time.
Finally, surgery was over and the doctor came to see us. He told us everything went well. He was able to remove the entire tumor. This is about the time when that terrible word was mentioned - cancer. We would have to wait to get results of the tumor, to know if it was cancerous or not. This is where the numbers came in to the equation. 75% of this type of tumor are cancerous. It's the best type of brain tumor to have. Right, you're saying - there's a good brain tumor? If 75% are cancerous, that means 25% aren't, and that's got to be us. The doctor liked that we were optimistic, but continued to handle the situation as if we were the 75%. He told us the pediatric oncologist would come see us and give us some books and pamphlets and as soon as they had the word, they would let us know if it was cancer or not.
We knew that there could be complications from surgery. We knew that he would have a lot of stitches. We knew that he might not be able to focus and see us well that first day, since his eyes may have some nerve damage. What we didn't know is that he would barely be able to move. The drain was in place again and Cole had to lie in a certain position for that to work properly. This meant we couldn't pick him up and hold him for a few days.
Since he had to lie in a certain position, he just laid in his hospital bed in the ICU, listening to his favorite movies. He couldn't focus to see the television, but he could hear every word. He knew five seconds before the movie was over that it was the end and would quickly request the next movie.
***It seems like I had more to say leading up to this day than on this day.
Again, thanks for reading and letting me share!!
Lisa
We tried to keep Cole occupied with toys and treats and movies until surgery Monday morning. This is when his addiction to puzzles began. We had a few before this, but suddenly that's all he wanted to do. Each time someone left and returned for a visit, they had another puzzle. I think by the time we got out of the hospital in Mobile, we had about 40 puzzles.
Once the big day came, we didn't know what to expect. The hospital was wonderful to us. They had a very large room available for Jason and I, along with all our friends and family. We took Cole down for his surgery and waited for the team of nurses to take him back, once again. Just a few minutes before it was time for him to be taken back, he fell asleep. Our prayers were answered a second time.
Finally, surgery was over and the doctor came to see us. He told us everything went well. He was able to remove the entire tumor. This is about the time when that terrible word was mentioned - cancer. We would have to wait to get results of the tumor, to know if it was cancerous or not. This is where the numbers came in to the equation. 75% of this type of tumor are cancerous. It's the best type of brain tumor to have. Right, you're saying - there's a good brain tumor? If 75% are cancerous, that means 25% aren't, and that's got to be us. The doctor liked that we were optimistic, but continued to handle the situation as if we were the 75%. He told us the pediatric oncologist would come see us and give us some books and pamphlets and as soon as they had the word, they would let us know if it was cancer or not.
We knew that there could be complications from surgery. We knew that he would have a lot of stitches. We knew that he might not be able to focus and see us well that first day, since his eyes may have some nerve damage. What we didn't know is that he would barely be able to move. The drain was in place again and Cole had to lie in a certain position for that to work properly. This meant we couldn't pick him up and hold him for a few days.
Since he had to lie in a certain position, he just laid in his hospital bed in the ICU, listening to his favorite movies. He couldn't focus to see the television, but he could hear every word. He knew five seconds before the movie was over that it was the end and would quickly request the next movie.
***It seems like I had more to say leading up to this day than on this day.
Again, thanks for reading and letting me share!!
Lisa
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