It has been a while since I posted. We are hangin in there.
In reference to the toy drive that we did in October in honor of Kaleb's birthday- Since we are not able to actually hand out toys like we were hoping, we have decided to donate them for Christmas at the hospitals..
Tuesday, November 24, 2009
Saturday, November 7, 2009
New ideas!
So to start off- We are doing ok. Kaleb's birthday was hard to deal with. We got lots of toys for the toy drive. The bad news is that I was going to get a group of kids together to go to the hospital to hand the toys out, well with it being Flu Season- No one under 18 is allowed on the floors. The lady told us we could wait until April! Um... I don't think so. We will have to come up with another idea.
I do want to organize several fundraisers for a couple foundations- One that helped us tremendously when Kaleb was diagnosed. Its the Brain Tumor Foundation For Children. And the other I Still have to find- I want to support whoever out there is specifically researching a cure for Kaleb's type of cancer.
If you want to help me organize these things let me know!! I'll take all the help and ideas I can get.
Christmas is coming up so fast. I just want to cry at the thought. I miss my baby boy so much it hurts.
I do want to organize several fundraisers for a couple foundations- One that helped us tremendously when Kaleb was diagnosed. Its the Brain Tumor Foundation For Children. And the other I Still have to find- I want to support whoever out there is specifically researching a cure for Kaleb's type of cancer.
If you want to help me organize these things let me know!! I'll take all the help and ideas I can get.
Christmas is coming up so fast. I just want to cry at the thought. I miss my baby boy so much it hurts.
Wednesday, September 23, 2009
Was I wrong?
I am getting frustrated with Blogspot. While it is highly customizable, it is also confusing...
People ask how to get updates via email... Do they "follow" or subscribe... Thought I had it figured out- but no... Then I see Feedburner only send email updates at a certain time of day... Thats insane... So If you want to make sure you see the latest updates I suggest you Bookmark this link
http://kalebscourage.blogspot.com/ And check back often for updates until I figure out how to fix the subscription thing or end up quitting all together!
People ask how to get updates via email... Do they "follow" or subscribe... Thought I had it figured out- but no... Then I see Feedburner only send email updates at a certain time of day... Thats insane... So If you want to make sure you see the latest updates I suggest you Bookmark this link
http://kalebscourage.blogspot.com/ And check back often for updates until I figure out how to fix the subscription thing or end up quitting all together!
All in a day
Just when I thought I was getting the hang of this! haha! So, You should be able to enter your email to the left where it says "Subscribe via email" and get email updates. Seems easy enough- Hope it works!
Third entry of the day! Summary Jan 09 - Present
Well I realized that since we will be accumulating more friends, that I should post a short summary about the last 8 months.... I may miss things but for more info please dont hesitate to visit Kaleb's Caringbridge site @ www.caringbridge.org/visit/kalebmyers
Kaleb has always had speech problems. So he had been getting speech and occupational therapy and it was helping so much. In November he had an ABR which is a sedated hearing test. The results showed that his hearing was fine but that sound took longer to get from his ear to his brain stem than other kids his age.So they referred him to a Neurologist for further testing. on Dec 30th.
A few days/a week before Christmas his left eye started turning inward, I called his Ped, they recommended him seeing an Optometrist, so I call them and they say it might be better to see a Ped Opthamologist .I made the first available appt for feb 5th.
Dec 30th we go to the Neurologist and she orders an MRI..we have to wait on insurance to approve it and whatnot.
At the beginning of January, Kaleb started limping, sort of dragging his right leg. We take him to the doctor on 1-6-09. She checked him out and just sort of blew it off like its not a big deal... Said she more worried about his eyes... Also said we should go to an optometrist to see whats the deal with his eyes... whether its his vision or a muscular problem..ok fine..made the appt for the next day-wed.-.
As I said, Kaleb receives ST and OT, He has that on wednesdays. We get up wednesday morning and Kaleb wont use his right arm. We take note, I figured I'd call the Pediatrician while Kaleb was in therapy. We get to therapy and Kaleb goes back for Ocupational therapy and I call the dr.. They said theyd get a note to the nurse and shed call me... Im a bit irritated they dont think this is a big deal but.whatever.Then the Speech therapist comes out after being called in to Kalebs OT session and asks us if we've noticed the problems hes having because Kaleb couldn't do things he use to be able to- like climb a little ladder with the therapist. So I called the Pediatricians office and demanded something be done and also the therapists called.. The Peds office called the Neurologists office to get the MRI approved stat. A few minutes later while the therapists went ahead and took him back to do speech therapy the Neurologists office calls me nd says they want to see him immediately. So we rush to savannah and the Neurologist sees him.. says yes, he needs an MRI.. So he send us to Memorial Health University Hospital to get an MRI. Go there and get admitted to the Backus Childrens Hospital there.Find out his MRI wont be until Thursday morning.
Thursday morning 1-8-09 at 7 Kaleb had his MRI.. waiting was excruciating. Around 9 am our room is bombarded with the first Neurologist we saw on the 30th....several doctors and a few nurses.
The Neurologist was like hi, remember me, im blah blah blah, this is Dr blah blah He's a NeuroSurgeon and we need to talk to you about Kalebs MRI. So Dr Thompson-the Neurosurgeon- comes over to us and he says 'i'm not going to sugar coat anything, Your son has a brain tumor' Of course I am damn near useless at that point because I am hysterical. We go to an empty room so he can explain some things without having Kaleb get upset. He talks to us for forever. I dont remember too much of it, we go back to Kaleb's room and I kick all the doctors and nurses out so we can be alone as a family
Later on We find out that Kaleb will be receiving Physical therapy, Speech therapy, and also Occupational therapy while in the hospital. he had his first sessions with all those on thursday.
Friday, 1-9-09 we met with the NeuroSurgeon and look at Kaleb's brain scans. He explains the tumor- as much as he can at that point.. Tells us how he will do the surgery and explains all the risks. Later in the day on Friday we meet the Oncologist He tells us his job and so forth and how we will be treating Kaleb after surgery as the NeuroSurgeon said that he will NOT be able to get ALL of the tumor. Its not in Kaleb's best interest to do so at this point so thats where the Oncologist comes in. Also we will have Radiation doctors and Chemotherapy doctors to find the best way to try to rid Kaleb of the rest of the tumor.
Monday 1-12-09 Kaleb had his surgery for the biopsy. He was in surgery for 5 hours. Everything went well no complications.
Friday 1-16-09 We get some results from the biopsy. The type of tumor is Astrocytoma..They classify the tumor into grades 1-4 depending on how aggressive the tumor is. Grade 1 is the best scenario and 4 being the worst. The grade is up for debate as 2 pathologists from the hospital thought it was a grade 2 possibly 3 and one thought it was a grade one. The specimens were sent to Duke University for a formal diagnosis. We found out that Kaleb's tumor is a grade III Otherwise known as an Anaplastic Astrocytoma.
From that point on our lives were changed forever. (the rest will be in semi chronological order as the Caringbridge site only allowed so much text and what you read was the limit)
Kaleb did his best to act as normal as he could despite his apparent limitations.
In mid- February Kaleb woke up, just to fall right back asleep- He was burning up- very hard to rouse and throwing up... I seriously thought we'd lose him right then and there. We called the ambulance who took ust to the nearest Hospital to stabilize him and then transported us to Savannah where he had a short stay in the ICU and was determined that he had both Type A & B Flu.
He had surgery to implant a port into his chest to make giving him his medication for radiation a lot easier.
He started radiation late February and had 20 treatments.
We went in his Make a Wish trip to disney in early April.. He felt bad the entire time...they upped his steroids but it was not working.. we had left on a saturday to go to disney, That wednesday Kaleb was still not himself but he tried to be happy. that thursday we were to stay the night in a local hotel there. While we were packing Kaleb would not wake up... Off to the local ER we went. When we got there Kaleb was so out of it. I was so scared! He had yellow liquid coming from his nose( Which no one at the ER could identify) He stayed in the hospital a short while- They did another MRI and it was then determined that radiation had not made the tumor shrink at all. We were so devastated.
He was discharged the next Saturday... On the ride home( we drove to FL) He threw up his steroid dose. We went to the Hospital right when we got back in town. There was talk of Hydrocephalus(fluid on the brain) and needing a shunt. After another MRI we found out that the hydrocephalus, however minor, was NOT what was causing the decline in Kaleb's health.. His tumor was growing. And growing FAST. We were discharged a few days later on Hospice care. Kaleb was home with us for four weeks before He earned his Angel Wings on May 13th 2009.
That is pretty much the gist of his journey. I know I left out things- please refer to the journal. I will continue to post how and in what ways Kaleb has inspired me, the things he loved to do, the little things he did to make our days worthwhile, and anything else Kaleb related.
Thanks for taking the time to read.
Kaleb has always had speech problems. So he had been getting speech and occupational therapy and it was helping so much. In November he had an ABR which is a sedated hearing test. The results showed that his hearing was fine but that sound took longer to get from his ear to his brain stem than other kids his age.So they referred him to a Neurologist for further testing. on Dec 30th.
A few days/a week before Christmas his left eye started turning inward, I called his Ped, they recommended him seeing an Optometrist, so I call them and they say it might be better to see a Ped Opthamologist .I made the first available appt for feb 5th.
Dec 30th we go to the Neurologist and she orders an MRI..we have to wait on insurance to approve it and whatnot.
At the beginning of January, Kaleb started limping, sort of dragging his right leg. We take him to the doctor on 1-6-09. She checked him out and just sort of blew it off like its not a big deal... Said she more worried about his eyes... Also said we should go to an optometrist to see whats the deal with his eyes... whether its his vision or a muscular problem..ok fine..made the appt for the next day-wed.-.
As I said, Kaleb receives ST and OT, He has that on wednesdays. We get up wednesday morning and Kaleb wont use his right arm. We take note, I figured I'd call the Pediatrician while Kaleb was in therapy. We get to therapy and Kaleb goes back for Ocupational therapy and I call the dr.. They said theyd get a note to the nurse and shed call me... Im a bit irritated they dont think this is a big deal but.whatever.Then the Speech therapist comes out after being called in to Kalebs OT session and asks us if we've noticed the problems hes having because Kaleb couldn't do things he use to be able to- like climb a little ladder with the therapist. So I called the Pediatricians office and demanded something be done and also the therapists called.. The Peds office called the Neurologists office to get the MRI approved stat. A few minutes later while the therapists went ahead and took him back to do speech therapy the Neurologists office calls me nd says they want to see him immediately. So we rush to savannah and the Neurologist sees him.. says yes, he needs an MRI.. So he send us to Memorial Health University Hospital to get an MRI. Go there and get admitted to the Backus Childrens Hospital there.Find out his MRI wont be until Thursday morning.
Thursday morning 1-8-09 at 7 Kaleb had his MRI.. waiting was excruciating. Around 9 am our room is bombarded with the first Neurologist we saw on the 30th....several doctors and a few nurses.
The Neurologist was like hi, remember me, im blah blah blah, this is Dr blah blah He's a NeuroSurgeon and we need to talk to you about Kalebs MRI. So Dr Thompson-the Neurosurgeon- comes over to us and he says 'i'm not going to sugar coat anything, Your son has a brain tumor' Of course I am damn near useless at that point because I am hysterical. We go to an empty room so he can explain some things without having Kaleb get upset. He talks to us for forever. I dont remember too much of it, we go back to Kaleb's room and I kick all the doctors and nurses out so we can be alone as a family
Later on We find out that Kaleb will be receiving Physical therapy, Speech therapy, and also Occupational therapy while in the hospital. he had his first sessions with all those on thursday.
Friday, 1-9-09 we met with the NeuroSurgeon and look at Kaleb's brain scans. He explains the tumor- as much as he can at that point.. Tells us how he will do the surgery and explains all the risks. Later in the day on Friday we meet the Oncologist He tells us his job and so forth and how we will be treating Kaleb after surgery as the NeuroSurgeon said that he will NOT be able to get ALL of the tumor. Its not in Kaleb's best interest to do so at this point so thats where the Oncologist comes in. Also we will have Radiation doctors and Chemotherapy doctors to find the best way to try to rid Kaleb of the rest of the tumor.
Monday 1-12-09 Kaleb had his surgery for the biopsy. He was in surgery for 5 hours. Everything went well no complications.
Friday 1-16-09 We get some results from the biopsy. The type of tumor is Astrocytoma..They classify the tumor into grades 1-4 depending on how aggressive the tumor is. Grade 1 is the best scenario and 4 being the worst. The grade is up for debate as 2 pathologists from the hospital thought it was a grade 2 possibly 3 and one thought it was a grade one. The specimens were sent to Duke University for a formal diagnosis. We found out that Kaleb's tumor is a grade III Otherwise known as an Anaplastic Astrocytoma.
From that point on our lives were changed forever. (the rest will be in semi chronological order as the Caringbridge site only allowed so much text and what you read was the limit)
Kaleb did his best to act as normal as he could despite his apparent limitations.
In mid- February Kaleb woke up, just to fall right back asleep- He was burning up- very hard to rouse and throwing up... I seriously thought we'd lose him right then and there. We called the ambulance who took ust to the nearest Hospital to stabilize him and then transported us to Savannah where he had a short stay in the ICU and was determined that he had both Type A & B Flu.
He had surgery to implant a port into his chest to make giving him his medication for radiation a lot easier.
He started radiation late February and had 20 treatments.
We went in his Make a Wish trip to disney in early April.. He felt bad the entire time...they upped his steroids but it was not working.. we had left on a saturday to go to disney, That wednesday Kaleb was still not himself but he tried to be happy. that thursday we were to stay the night in a local hotel there. While we were packing Kaleb would not wake up... Off to the local ER we went. When we got there Kaleb was so out of it. I was so scared! He had yellow liquid coming from his nose( Which no one at the ER could identify) He stayed in the hospital a short while- They did another MRI and it was then determined that radiation had not made the tumor shrink at all. We were so devastated.
He was discharged the next Saturday... On the ride home( we drove to FL) He threw up his steroid dose. We went to the Hospital right when we got back in town. There was talk of Hydrocephalus(fluid on the brain) and needing a shunt. After another MRI we found out that the hydrocephalus, however minor, was NOT what was causing the decline in Kaleb's health.. His tumor was growing. And growing FAST. We were discharged a few days later on Hospice care. Kaleb was home with us for four weeks before He earned his Angel Wings on May 13th 2009.
That is pretty much the gist of his journey. I know I left out things- please refer to the journal. I will continue to post how and in what ways Kaleb has inspired me, the things he loved to do, the little things he did to make our days worthwhile, and anything else Kaleb related.
Thanks for taking the time to read.
Trying to get used to the new blog!
Well this is quite different than what I am used to! So many things to do, add, customize! Hopefully all of our family and friends both new and old will make their way over here to follow us.
I have had a few people ask how to "follow us" You will see "subscribe via email" Enter your email and there you go!
Hopefully this helps yall in staying in touch with us! Also you may have noticed the ICON above Kaleb's picture. Thats for my Yahoo! Instant Messenger. If you'd like to chat, and I am online please feel free to add me.
I think this will take some getting used to and to get everybody over from Caringbridge, but I believe it will be a good change for us.
With love,
Brandy, Adam, Hannah and always ^Kaleb^
I have had a few people ask how to "follow us" You will see "subscribe via email" Enter your email and there you go!
Hopefully this helps yall in staying in touch with us! Also you may have noticed the ICON above Kaleb's picture. Thats for my Yahoo! Instant Messenger. If you'd like to chat, and I am online please feel free to add me.
I think this will take some getting used to and to get everybody over from Caringbridge, but I believe it will be a good change for us.
With love,
Brandy, Adam, Hannah and always ^Kaleb^
I just love how he smiled through it all.....Such an inspiration you are baby boy!! Love you!!
Tuesday, September 22, 2009
Yes, we have moved to Blogspot!
I have been thinking for a while now that since Caringbridge was to keep everyone updated on Kaleb and his health, that it should be left at that. It was an awesome outlet for support but in my heart it feels like it should stay HIS. So! Here we are! We will be blogging about Kaleb, of course. But also about Hannah, Adam and I and our life as we learn and cope with the passing of our Hero! Welcome aboard!
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