We started bleomycin therapy this week and will continue 3 days a week for the next three weeks. Everything is going well so far and Eli is feeling just fine.
We had a bit of a scare after monday's treatment when Eli got sick and threw up a few times monday night and tuesday morning. We were worried that the medicine was leaking and that maybe the treatment wasn't going to work.
We had a few CT scans to confirm that the system (the catheter stuck into the hollow cyst of the tumor) was still sealed and everything looks great. He feels great today too so it looks like it was just a normal kid throwing up thing and nothing else.
He was so cute, yesterday after he started feeling a bit better he kept telling everyone he saw at the hospital "I puked." He has been a real trooper and incredibly brave through all of it, Mommy and Daddy are very proud.
Wednesday, February 25, 2009
Thursday, February 12, 2009
Here's what the tumor looks like.
Here's an MRI cross-section through the middle of the tumor at the beginning of January. The tumor (the big white egg) hasn't changed since then but the hydrocephalus in the ventricles (the black space just above the tumor) has gotten much smaller - see below.
This is a video from the same MRI that scans from one side of his head to the other.
These are pics from approx the same place in Eli's head on Jan3 -vs- Feb11. They show the reduction in cerebrospinal fluid in the ventricles (black spaces) of his brain over the last month since the shunt was installed to drain excess fluid into his abdomen and relieve the pressure that was causing many of his symptoms. The pictures look slightly different because one is an MRI and the other a CT. The white line in the bottom left of the right image is part of his shunt tube.
Let's start the bleomycin!
Today was a good day! Today we found out that we will be able to try and treat Eli's tumor the way we hoped: Intracavitary Bleomycin (a.k.a. inject medication into a reservoir that drains into a catheter that is placed in the center of the tumor and then shrink the thing from the inside out). This approach is more novel, but potentially has less risk for damage to his brain...which is a pretty wonderful thing and we want to keep it intact. Most of these tumors are removed by surgery or what is called a radical resection. Essentially they try and remove every last cell (which can result in them removing a little brain tissue), because to leave any behind will eventually result in regrowth of the tumor. So we hope to avoid this approach.
After three weeks of anticipation we are very happy to report that we will beginning the actual "treatment" in 10 days. Unfortunately, we are far from out of the woods yet, but now we have a path and hopefully the path will be clear and true and end at the annihilation of the tumor.
As for "non-medical" stuff, Eli is continuing to do great. He is becoming more and more active, having tantrums (yup-his first! and we are so happy to see them), going to the park, the zoo, the museums, the library and loving all the new things he is learning and people he is meeting. We hope that he will start back at school in March as the chemotherapy he will be getting for the tumor will not be systemic and therefore will NOT cause him to have any side effects or problems normally associated with chemotherapy.
As for mommy and daddy, we are hanging in there...Dad will be getting back to writing his dissertation this week and he hopes he will be finished in two months. Mom is back in school, attending most classes and so far has passed her first two exams. We are all looking forward to Spring Break, when we hope that we can actually take one...a break!!!
For those of you who are interested we will be starting a blog of Eli and his tumor. Because this disease is so rare we hope that charting Eli's course will help others who are diagnosed in the future with this disease to learn about treatments, presentations, emotional effects and the bright future that amazing medical care can provide. When it is up and running we will email you with the address. We will also uploaded images of Eli's tumor if you want to have a peek!
Until then we have attached the image taken today. It is of the tumor filled with a contrast dye. This was the test done to ensure that the catheter was sealed in the tumor and that no medication would leak out into the surrounding brain tissue (that would be BAD). So this picture, while kinda scary and sad, also carries a message of hope! So try and look at it that way. And if you are confused at what you are looking at...it is the big white thing in the middle. Black is water or air, white is bone or contrast dye and grayish is brain matter/tissue. And the little white half-circle on the lower left side is an outline of his shunt (the thing that drains the fluid out of his head and into his abdomen...he likes to push on it!)
I think that is all for now. Thank you again for your love and support...and for all the great pictures. Eli loves looking at them!
All our best to you and yours,
Love
Eli, Jacob and Meagan
After three weeks of anticipation we are very happy to report that we will beginning the actual "treatment" in 10 days. Unfortunately, we are far from out of the woods yet, but now we have a path and hopefully the path will be clear and true and end at the annihilation of the tumor.
As for "non-medical" stuff, Eli is continuing to do great. He is becoming more and more active, having tantrums (yup-his first! and we are so happy to see them), going to the park, the zoo, the museums, the library and loving all the new things he is learning and people he is meeting. We hope that he will start back at school in March as the chemotherapy he will be getting for the tumor will not be systemic and therefore will NOT cause him to have any side effects or problems normally associated with chemotherapy.
As for mommy and daddy, we are hanging in there...Dad will be getting back to writing his dissertation this week and he hopes he will be finished in two months. Mom is back in school, attending most classes and so far has passed her first two exams. We are all looking forward to Spring Break, when we hope that we can actually take one...a break!!!
For those of you who are interested we will be starting a blog of Eli and his tumor. Because this disease is so rare we hope that charting Eli's course will help others who are diagnosed in the future with this disease to learn about treatments, presentations, emotional effects and the bright future that amazing medical care can provide. When it is up and running we will email you with the address. We will also uploaded images of Eli's tumor if you want to have a peek!
Until then we have attached the image taken today. It is of the tumor filled with a contrast dye. This was the test done to ensure that the catheter was sealed in the tumor and that no medication would leak out into the surrounding brain tissue (that would be BAD). So this picture, while kinda scary and sad, also carries a message of hope! So try and look at it that way. And if you are confused at what you are looking at...it is the big white thing in the middle. Black is water or air, white is bone or contrast dye and grayish is brain matter/tissue. And the little white half-circle on the lower left side is an outline of his shunt (the thing that drains the fluid out of his head and into his abdomen...he likes to push on it!)
I think that is all for now. Thank you again for your love and support...and for all the great pictures. Eli loves looking at them!
All our best to you and yours,
Love
Eli, Jacob and Meagan
Monday, February 9, 2009
Day 38: Start My Blog
Hi, I am Eli. I am 2 years old and I was diagnosed with a craniopharyngioma, a "benign" brain tumor on January 2, 2009.
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