Wow. It's been FOREVER!
Caleb's had so much going on since last post… I don't even know where to start!
He had an amazing birthday celebration. Had a great day with friends and family. He had a magician and party at a local park and venue.
Caleb had dental surgery in December along with his 12 week Lumbar Puncture. It went great. He had an amazing dental oncologist do all the work and he got it done in one shot!
Caleb attended both Base Camp Winter Formal and Kids Beating Cancer Holiday Parties.
He had a great holiday season with his classmates at school and and family at home. And on Christmas morning we found out - Caleb was going to be promoted to BIG BROTHER…… And just a few weeks ago, we found out it will be a little sister - just what he asked for! :)
In February Caleb attended his Make a Wish trip aboard a BIG pirate ship and swimming with the Dolphins! We went on a Disney cruise to the Bahamas! He had an AMAZING time! It was so great to get away from the daily grind and doctors visits. He smiled from ear to ear - the WHOLE time!
Caleb had a few issues medically over the last few months. He had reoccurring ear infections, but after seeing a specialist he is doing much better with the meds he is on. We are trying to avoid the surgery for tubes and so far…. going well! His really expensive nose spray is doing the trick and keeping that ear canal dry!
His allergies have been horrible down here in Florida the past few weeks! So we are constantly battling that.
Caleb also got pancreatitis for the THIRD time this April. It landed him inpatient and in pain for about 3 days :( We caught it extremely early this time, but still all the damage and stress on his pancreas worries me. We see the specialist this week that is looking to perform some testing on him. Genetic testing for hereditary pancreatitis, the chemo being the culprit, diet and fat intake and endoscopy to see the damage that has occurred so far since he's had 3 bouts of it.
And now he's restarted chemo at 50% and we are holding out there. His oncologists had a big meeting about my little boy and this is where they all feel we need to stay. In addition to that, our clinic visits each month are now turning into a much longer visit. Caleb's onc called me this week and a test that than ran in beginning of the month came back from Mayo Clinic. Calebs' IGG levels are way lower than they should be - hes in a 200 range and needing to be in a 400 range. So he will start IVIG this week. It's a 4 hour transfusion that will help increase those levels. Along with the good, I've also researched the effects it can have. Sorry, I always want to know everything and educate myself as best as I can on my little boy and his condition. A lot of people tell me to stay off google, but I want to know - before and know what to expect. I read some of the side effects, some tolerable and some not so much. But I will pray for the tolerable ones and that he goes through these treatments swiftly and smoothly. Since his allergy list is growing with medications and such, it just worries me -- like any mother would.
So, I will try to update the blog as best as I can and more often know. We just had a lot going on and I wasn't feeling my best to be on a computer for about 2 months of the pregnancy. His sister gave me all day sickness that was not fun - but all is good now! We will be back with updates for you all!!
Caleb's had so much going on since last post… I don't even know where to start!
He had an amazing birthday celebration. Had a great day with friends and family. He had a magician and party at a local park and venue.
Caleb had dental surgery in December along with his 12 week Lumbar Puncture. It went great. He had an amazing dental oncologist do all the work and he got it done in one shot!
Caleb attended both Base Camp Winter Formal and Kids Beating Cancer Holiday Parties.
He had a great holiday season with his classmates at school and and family at home. And on Christmas morning we found out - Caleb was going to be promoted to BIG BROTHER…… And just a few weeks ago, we found out it will be a little sister - just what he asked for! :)
In February Caleb attended his Make a Wish trip aboard a BIG pirate ship and swimming with the Dolphins! We went on a Disney cruise to the Bahamas! He had an AMAZING time! It was so great to get away from the daily grind and doctors visits. He smiled from ear to ear - the WHOLE time!
Caleb had a few issues medically over the last few months. He had reoccurring ear infections, but after seeing a specialist he is doing much better with the meds he is on. We are trying to avoid the surgery for tubes and so far…. going well! His really expensive nose spray is doing the trick and keeping that ear canal dry!
His allergies have been horrible down here in Florida the past few weeks! So we are constantly battling that.
Caleb also got pancreatitis for the THIRD time this April. It landed him inpatient and in pain for about 3 days :( We caught it extremely early this time, but still all the damage and stress on his pancreas worries me. We see the specialist this week that is looking to perform some testing on him. Genetic testing for hereditary pancreatitis, the chemo being the culprit, diet and fat intake and endoscopy to see the damage that has occurred so far since he's had 3 bouts of it.
And now he's restarted chemo at 50% and we are holding out there. His oncologists had a big meeting about my little boy and this is where they all feel we need to stay. In addition to that, our clinic visits each month are now turning into a much longer visit. Caleb's onc called me this week and a test that than ran in beginning of the month came back from Mayo Clinic. Calebs' IGG levels are way lower than they should be - hes in a 200 range and needing to be in a 400 range. So he will start IVIG this week. It's a 4 hour transfusion that will help increase those levels. Along with the good, I've also researched the effects it can have. Sorry, I always want to know everything and educate myself as best as I can on my little boy and his condition. A lot of people tell me to stay off google, but I want to know - before and know what to expect. I read some of the side effects, some tolerable and some not so much. But I will pray for the tolerable ones and that he goes through these treatments swiftly and smoothly. Since his allergy list is growing with medications and such, it just worries me -- like any mother would.
So, I will try to update the blog as best as I can and more often know. We just had a lot going on and I wasn't feeling my best to be on a computer for about 2 months of the pregnancy. His sister gave me all day sickness that was not fun - but all is good now! We will be back with updates for you all!!
Base Camp Formal
Holidays at school and family Christmas
Breathing Treatment at Home
Look who's gonna be a BIG BROTHER
TBall - Southland Lodge Opening Day Celebrations
Vero Beach Weekend Trip
March 2014
Field Day - Magic Juice
March 2014
Runway - Boys Bash
Make a Wish Trip
Feb 2014
Thank You all for your continued prayers and support….
You help us to continue to fight EVERYDAY!
Love,
Caleb & Mama
You help us to continue to fight EVERYDAY!
Love,
Caleb & Mama
Comments
Post a Comment