My Health
Cayden started having headaches a couple weeks ago in Nov 09. His whole body would shake and he would cry
out my brain hurts or pleas make it stop. He was rushed to the ER where they did a CT Scan and discovered a mass on his brain.
He was then transported by ambulance to Childrens Mercy Hospital downtown Kansas City where he was admitted for 3 days to
the oncology floor. They did an MRI on him and was diagnosed with Juvenile Piloeytic Astrocytoma which is a brain tumor. To
learn more about this disease click on the link
http://www.columbianeurosurgery.org/tag/juvenile-pilocytic-astrocytomas/He was released from the hospital and made an appt with a neurosurgeon 12/1. Dr said they would do surgery
ASAP to remove hopefully all of the tumor without any permanent damage. Surgery was scheduled for 12/4.
To learn more about brain tumors in children you can also visit
The Childrens Brain Tumor Foundation
12/4
Cayden underwent a 5-1/2 hour surgery and did really well through surgery. They were not able to remove
all the tumor as it was too deep into the brain stem. He doesnt think this is malignent but wont know until the biopsy comes
back in 2-3 days. He did say this will be a life long journey as this tumor will continue to grow. He will need surgery again
at some point depending on how fast the tumor grows. He will probably need some physical therapy for balance issues from the
surgery. He will be in ICU for a couple days depending on how he does. I was able to see Cayden before leaving the hospital
and he was resting but he looked really good. He did wake up and complain of pain but then said he was hungry so thats a really
good sign! He will have another MRI on 12/5 to see how much of the tumor is left.
12/5
They did the MRI on Cayden today and found about 1/2 inch size tumor is left. They are still waiting for
the biopsy results to decide what to do, if it is benign they are thinking of going back in and pushing the cerebellum down
and removing the rest of the tumor.
Cayden was sedated for the MRI today so he was sleeping alot. The swelling has gone down in his face and
he looks good. They got him up to sit on Moms lap plus he drank some sprite and kept it down. He wakes up every so often
in pain and I feel so bad for the little guy. This evening they did move him to the oncology floor out of ICU.
12/6
They took Cayden off the IV pain meds today and are giving him oral meds. They want him up and moving around
more. He is sitting up in bed and watching some TV now but he doesn't want to eat. He got a sponge bath today so Im
sure he has to feel better plus they changed the bandage. He did get to color a little bit today also. He is very weak
and wobly and can not stand on his own yet, we are hopeing to work more on this tomorrow so he can stand on his own and hopefully
he will start eating.
12/7
Cayden was awake watching TV a lot today. He got to have a bath but didn't like it much. He is still a little
wably when he walks and still needs help. He did eat more today too. He is a bit on the grumpy side but who can blame
him. Hes tired of being stuck with needles and Drs looking at him. He did have some tingeling in his foot this morning that
the Neurologist was concerned about but hasn't complained about it any more. He is having some trouble with hand to mouth
as he feeds himself but each day that seems to be getting better. His eyes are also very light sensitive so when
the lights are on he wears sunglasses.
12/8
Biopsy results are benign NO CANCER stage 2. Stage 1 and 2 of brain tumors is benign. Stage 3 and 4
is malignent. It is a stage 2 Astrocytona. We are now waiting for the "game plan" from the Dr which we should
have in a couple days. The options are going back in a removing what tumor is left, chemotherapy or radiation or leave
it be and watch it.
Cayden has been eating more today and seems happier. He is still weak and off balance so he will
be having physical therapy. He has been sitting up in bed playing with some toys and watching TV. They did bring him
a wheel chair so he can leave his room.
12/9
Cayden can not walk by himself and theres times when its hard for him to hold up his own head but each day
he improves.
Cayden was in a good mood today and laughing which is so good to see. He was more like my Bubba Cayden and
happy. He is eating better and even went for a tractor ride in the hall.
They are monitoring his heart rate for a day or two, their not sure if it is fluxuating because of
the Dexamethesone hes on to reduce swelling or if it is pressure in his brain area that is causing it. They are
tapering him of the meds so they should know in a couple days what is causing it.
We are still awaiting Drs plan of action. We did find out today that stage 2 is slow growing tumors.
Someone brought Cayden a build a bear today also.
The Physical Therapist came in this evening and did a few test. It seems Caydens peripheral vision is not
working properly plus they may want to move him to a different floor for extensive physical therapy 3 hours a day. We should
know for sure tomorrow.
12/10
Cayden has had kinda a rough day today but still pretty happy. He cant seem to keep anything down and he
gets dizzy when he sits up. They did a CT Scan and everything seems to be ok plus his bloodwork is normal. He is walking by
himself now and having no problems feding himself. He is bouncing back fast! still waiting for the Drs plan.
12/11
They did a strep test on Cayden yesterday and it came back positive so I think thats why he couldnt keep
anything down yesterday, bless his heart.
Cayden got to go home today! Plan of action is letting him heal for a while and then going back in
to remove the rest of the tumor. Don't know when that is yet but I'm sure it will be after Christmas.
I will continue updates, but it will probably be a couple times a week now.
12/14
Got to visit with Cayden today and he is doing real good. Just a slight balance issue. He is so glad to
be home and able to be a kid again.
Cayden is doing well except he does seem to get tired easy and when he gets tired he loses his balance.
He did get to go to his preschool for the Christmas party and see his Teachers and friends. Stitches are out and it is healing
good. He may still need to do some physical therapy. He might also get to return to preschool after the Holiday
break.
12/22
Cayden seen the Neurosurgeon today. He wants to go back in the end of Jan and try to remove the rest of
the tumor. He said since Cayden did so well through the last surgery and recooperated fast he wants to go back in before the
scare tissue starts to form. He said they got 75% of the tumor last time and hes sure he can get 20% more of it. I will post
when I have the date.
Other than that he seems to be doing pretty well and of course is excited and awaiting for Santa! He starts
his physical therapy tomorrow and his evaluation.
12/23
Cayden had all day physical therapy today and is weak in his right side. They will be doing alot of therapy
with him to get him stronger. He also tires very easy. I just can't imagine what Mom is going through having to watch her
little boy go through all this. Please keep the prayers going and Merry Christmas!
12/29
Cayden was taken to the ER because he had been throwing up and they did a strep test which was positive
again. Poor baby! Looks like he may have to have his tonsils out in the future. Other than that he is having fun with
his Christmas toys.
Caydens second surgery is scheduled for January 28th.
12/31
Cayden has had some swelling in the area where the tumor was removed. The Dr had stated after his
surgery that he would have some fluid that would build there but that the body would resorb it eventually. That area
has been getting bigger and bigger plus he has been having more frequent headaches and discomfort. He was taken to the ER
last night for fever and vomiting. They did a lumbar puncture and discovered he has an infection in that fluid around his
brain so they admitted him to the hospital. He will be put on IV antibiotics and be watched for a few days. They also discovered
he has Meningitis but they won't know for a couple days if it's bacterial or viral.
They inserted a drain tube in the area where the tumor was removed so that the fluid will drain and not
cause pressure.
1/3
Cayden is still in the hospital and will be for about 10 days. Looks like the memingitis he had was viral.
They put the drain tube in for the fluid on the brain and it will take about 10 days to clear up the infection.
1/9
Cayden is still in the hospital and he still has the drain in and will be taken out on Monday and hopefully
he will gwt to go home.
1/11
They removed the drain yesterday and were watching Cayden for 24 hours to see if the fluid buildup would
stop. They did a CT Scan and a abdomen ultra sound because he has been having stomach aches. The CT Scan shows no changes
and the fluid is still building which means there is a leak from when they did the surgery. The ultra sound shows he
has gallstones. I can not believe a 4 year old having gallstones!! They will need to stop the leak he has so I believe they
are going to move the surgery date up to wednesday (1/13) so they can stop the leak and go ahead and remove as much of the
tumor that is left. At this time they are giving him Zantac for the gallstones. If they end up doing the tumor surgery wednesday
I will provide more updates. Please continue to keep him and the family in your prayers. Cayden has been in the hospital 12
days now. The meningitis is all cleared up now.
1/12
They will do an MRI on Cayden in the morning then surgery is scheduled for 1PM. We don't know how long this
one will take as they will be at the brain stem and the the tumor is around the nerves so I would imagine it taking longer
than the last. When he heals from this surgery they will have to remove his gallbladder next. I'm sure that will be
aways down the road. I will update tomorrow evening when I arrive home.
1/14
Cayden had the MRI tyesterday morning before the surgery and the had said the tumor was actually smaller
than the previous scan which is a very good thing! What a blessing this child has had!
Cayden's surgery went well, it took about 3 hours and the Dr believes they got the remaining tumor and stopped
the leak. They won't know for sure on the tumor until the next MRI is done. He is in ICU and I did get to see him shortly
last night and he was a little uncomfortable. He was talking to Mom and said to her "when am I gonna be done with this" (wipeing
my tears) poor little guy! But what a blessing he is talking!! They are keeping the drain in for at least 5-10 more days.
Dr says he will heal faster. If the drain doesn't work and keep the swelling down then they might still have to put in a shunt.
I will not see him today but will still update everyday.
Thank you again for your support and prayers.
Cayden is still in ICU and now has another infection in the fluid around his brain so he is on antibiotics
again. They think it may be caused from the drain tube which is a foreign object to the brain. He is having trouble with his
eyes also being sensitive to light and having blurry vision. I will get to go see him tomorrow and will update when I get
home.
1/15
Cayden didn't have his MRI yesterday but he did have it today so he was sleeping most of the day. He was
in a lot of pain today also his head and his stomach. He is on a morphine drip so it is helping. We haven't heard the results
on the MRI yet. I should know more tomorrow.
Because of the drain tube in his head he has to stay at a 30 degree angle at all times except for about
an hour a day. He would really like to be able to sit up!
1/16
Cayden is still in quite a bit of pain still so they have upped his pain meds. Still no results on the MRI
but they did say some of the pain he is having is due to a pocket of air in the space where the tumor was which is causing
a headache.
Mom finally got to go home and be with Cody while Dad stayed at the hospital with Cayden.
1/18
Cayden wasn't doing so well this morning when I got there, he was having a lot of stomach cramps. He had
about 5 BMs so hes feeling much better as the day went on. He is eating better also. They are taking the drain out on
thursday and will watch him for 24 hours to see how he does without it. If the fluid does not resorb itself they will have
to go back in and put in a stent. As far as the gallstones they are giving him meds for that right now til he can heal from
this surgery before they remove the galbladder. He got to get out of bed today and walked from the bed to the bathroom twice
and did really good.
On the MRI they are seeing shadows so there not sure if it is fluid air or tumor. They will have to do another
one later on to determine if they got all the tumor. The pocket of air is causing headaches but should go away in a week.
Mom is so hopeing to go home this weekend!
\
1/19
Cayden is doing OK today but he just won't eat much. They are doing another x-ray of his tummy to see why
hes having tummy aches all the time. Rehab was in today and had Cayden walk with him. Hes still shaky but will get stronger
with physical therapy.
The x ray did not show anything so tomorrow they are doing another sanagram.
The 10 day IV antibiotics will be done saturday late evening so it will be at least sunday before they will
get to go home providing the leak in the brain stops.
1/21
Cayden is having more problems. He is having those headaches again and he says his left eye hurts and everything
looks bigger in that eye. He has been throwing up today and is running a fever again. They will be removing the drain saturday
and putting in a shunt. They can't do a CT scan of his tummy because his liver count is too high right now probably due to
the antibiotics. The Dr is on high alert regarding Cayden right now so please continue the prayers for him. Today is day 23
that they have been in the hospital. I requested the Elders to go up and administer to him again. Cayden is so tired of all
the needles and the pain poor little guy, I feel so bad for him. He has been sad a few days now and has been crying alot.
When you ask him why hes crying he says he doesn't know other than hes sad.
1/22
Cayden threw up once this morning and was still running a fever off and on. As the day went on he seemed
to get a little better. The Optomologist came in and did an exam and didn't find any problems but they will continue to watch
him closely. They drew blood today and said everything was within normal range. They also did a CT Scan of his tummy which
they said the galbladder was a little inflamed but nothing that would require immedioate removal of it. They also said
his kidneys looked a little stessed but didn't seem to worried about that either. After the CT Scan he perked up and was laughing
and playing. He does get tired easy though. Then this evening the fever started back up again and was at 103 when we
left the hospital. The Drs are not sure at this time what is causing the fevers. He is on 2 different antibiotics and has
been for 10 days now. I sure hope they figure out why he is having these fevers real soon. They had planned on putting the
shunt in tomorrow morning at 8am but now because of the fever they don't know if they will now or not.
1/23
They put the shunt in this morning and he is doing good. They will watch him now and see how he does with
the fevers. If he does OK he may get to go home on Monday!
Since Cayden had the shunt put in he is acting much better, no fevers and he is eating alot more! Lets hope
and pray he will continue to improve!
1/25
They found out that Cayden had a bacterial infection and started him on more antibiotics. He has a staff
infection. Today though they said he is well enough to go home!! Mom will keep a close eye on him as usual and we will see
how he does. I can only imagine how it will feel to be back home again!
I will continue the updates a couple times a week.
1/29
Cayden is not doing so well again. The swelling in the back of his head is not going down again which I
am assuming the shunt is not working??
He is also having very bad stomach pains due to the gallstones. Tina may have to take him to the ER again
if the pain persist and the swelling doesn't go down. I will keep you posted.
2/1
Cayden went to the Dr. today to get the stitches out. This Dr noticed the swelling in the back of his head
and made him an appt with the surgeon on wednesday. He will then decide what to do and what he thinks on the matter wether
to go back in and see why the shunt is not working or he may have to put a drain back in. If the put a drain back in he will
have to stay in the hospital while this is in.
He has not had any headaches and today his stomach is doing good plus he was eating more today. He just
has good and bad days. I just wish there was more good days than bad!
2/2
Cayden has had a pretty good day today. Just a little bit of pain in his head from the swelling. We will
know more about this problem after the Dr. appt tomorrow.
i've done a little bit of reserach on this leaking in his brain. It is called Cerebrospinal Fluid (CSF)
Leaks. This seems to be common after brain surgery. To read more about this visit
2/3
Cayden went to the surgeon today. The Dr. has put a band on his head to try and put pressure on the swelling
to force the fluid through the shunt. He said the shunt is blocked a little bit. They will watch this at home for a few days
and see if it will work. If not he will go back to the hospital and possibly do suregery again to see why its not working.
No stmach aches for a few days now. To top it off the donated car that was given to them broke down on the way to the Dr.
appointment so Grandpa went and saved them and followed them home.
2/5
Cayden has a Dr appointment 2/11. They are waiting until then and watching him to see if the band is working.
So far its not working. Other than that hes doing pretty good.
2/8
Cayden saw the surgeon today. He said the tubing from the shunt has slipped down and this is the reason
its not working properly so they are going in tomorrow morning to repair it. He will be put in the hospital again for a few
days.
On a better note he is eating better and has had no stomachaches other than on 2/6 he did have the flu but
is much better now.
2/9
Cayden had his surgery today and it went very good. He was in at 6:30 am and out on their way home at 11
am and wanted McDonalds on the way home.
2/11
Cayden came through his surgery just fine and went home a couple hours later. He is doing really good so
far. The swelling comes and goes so it is working now. He is still pretty weak and takes frequent naps during the day.
2/14
Cayden is doing well. The fluid builds up in the back of his head but then the shunk works and it goes down.
Lets hope it continues to work!!
2/16
Cayden saw the GI Dr today and he is going in 2/25 to have his gallbladder removed. He will be in the hospital
for a couple days if everything goes well. Other than that he seems to be doing good.
2/19
Cayden is now having problems from the last surgery to repair the shunt. His back is swelling. I guess when
he goes in for the gallbladder surgery they will look at it and decide what the, problem is.
2/26
Cayden had his surgery 2/25 to remove his gallbladder and did really well through it. They couldnt do it
laperoscopically because of the shunt tubeing so they had to cut him open to remove it but he did well. He went home today.
His back is still swelling from the shunt but they just want to watch him to see if it will someday work itself out and his
body starts to absorb the fluid faster.
3/7
Cayden is not doing so well again. He has started having the bad headaches running a fever. He is scheduled
for his MRI tomorrow but due to the fever they may not be able to do it.
3/9
Cayden went in on 3/8 for his scheduled MRI and they put him in the hospital because he has infection in
his shunt again. They have removed the shunt and put in a lumbar drain and he will be on IV antibiotics for a few days then
they will go back in and put a new shunt in his head this time. His birthday is March 13th so it looks like he will have to
spend his birthday in the hospital, he will turn 5.
3/13
Cayden had a nice birthday today, he ended up with 3 different parties! They will be putting in the new
shunt one day this week.
3/16
They will be putting in the new shunt on 3/18. They are also going to repair the hole the leak is coming
from.
3/18
Cayden did well through his surgery today. They had to cut his head again in a different place on the right
side then the tubing goes around his ear and down to his stomach on the inside of course. So far it looks very good and is
working only time will tell. When he got back to the room he had water a cookie and a chicken strip so this is very positive
news! Please keep the prayers going that this time it will finally work and he will be done with this for a long time. As
he grows, as long as it is working, they will eventually have to go back in and extend the tubing. If all goes well they will
get to go home on saturday.
I have added it up, since Nov 09 this child has had 7 surgerys! What a trooper he is!
3/20
Cayden finally got to go home today. Hes having some trouble vomiting but everything else is going good
and the shunt is working! He cant sit up for a long period and they think thats why hes throwing up until his body gets use
to the shunt actually working right.
Thank you all again so very much for all your prayers and support. I will continue
to update the website once a week.
3/28
Cayden is doing very well finally!
4/10
Cayden is doing very well, putting on weight and has returned back to preschool half days. Mom has returned
back to work.
5/20
Cayden is doing real good and the shunt is still working PLUS his night
terrors have seem to stop for
2 weeks now, please continue to pray for
him that these horrible night terrors hes been having will stop
completely.
He is going through water therapy and loves it. He has an
MRI in July to see how much if any tumor is left. He is getting
stronger everyday. Cayden just graduated preschool and will start
kindegarden this fall. I have included an adorable
pic of him in his
cap and gown!
6/3
Cayden had his MRI 6/1. His ventricles are back to normal size and the fluid that was near the tumor is
gone.There is still some tumor so they will watch him and do an MRI every 3 months to see if it is growing. We were so hopeing
it was completely gone :-( From the beggining the Dr said it was a slow growing type of tumor. He will still have the
shunt to release the fluid build up. Other than that he is doing well.
9/20
Cayden had his 3 month MRI and it shows the tumor has not grown. However because of the little symptoms
he is having they are sending him to a nuerologist to see if he may be having small seizures. He is still a little shaky but
other than that he is doing well. I will update again after his appt.
10/22
In the past couple of weeks Cayden has had an EEG done, seen the eye Dr had a hearing test and seen the
Neurologist so far all testing is GOOD! He still has to see the Neuro surgeon so hopefully it will be all thumbs up. He is
still a little shaky and has done all his therapy for ow. He also still has headaches from time to time that there not sure
why hes having them. The Neuro surgeon may have some input on that. He is in school and doing really well also. I will continue
to update after he sees the Dr and has additional testing. I really feel Cayden has received a blessing. Thank you all
again for all your prayers.
11/17
Cayden was seen by the Nuerosurgeon and he said the tumor has not grown so he is good to go for another
3 months when he has his nmext MRI.
