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.
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