Today was the second anniversary of the total resection of Lily's tumor and she have had no signs of any recurrence (knock on wood!). It is a major milestone and we are very happy that we have made it to this point!
It was suitable that CHOC (our hospital) and the American Cancer Society arranged the Courageous Kids Celebration, a carnival for cancer patients and their families today so we got to celebrate the milestone with a day of fun and games.
We also managed to meet up with one of the other CGBM kids that we know of (now 10 in USA). George lives just about 10 miles from us which is quite a coincidence with the small number of cases that we currently know of. We had a great time with George's family, Danika and George's older sister are close in age and hit it off at once. They spend the whole day running around and playing with each other. It is so intersting to share stories and experiences with another family that has been on this road longer than us, George is now 4 years cancer free and is now considered cured!!!
Our daughter Lily was diagnosed with a rare brain tumor at 4 months of age, this is a blog about her and our journey since then.
Sunday, June 26, 2011
Monday, June 13, 2011
Clear MRI
First, Lily's MRI came back clear again!!! Amazing news, almost 2 years since the tumor removal nothing is showing up. The longer we get from the surgery without relapse the less likely it is that it will come back!!! Thanks all for your thoughts and prayers!
Sammy is back in his old form, nothing stopping him or even slowing him down. His fever is gone and we are monitoring his temperature still giving him medicine but with less frequency.
Here is how it looked at home yesterday....
Total chaos in the indoor tent that I needed to put up after Sammy destroyed any building attempts done by Danika to make a temporary shelter.
Sammy is back in his old form, nothing stopping him or even slowing him down. His fever is gone and we are monitoring his temperature still giving him medicine but with less frequency.
Here is how it looked at home yesterday....
Total chaos in the indoor tent that I needed to put up after Sammy destroyed any building attempts done by Danika to make a temporary shelter.
Sunday, June 12, 2011
Flashback!
Lily's tumor was detected after she had a seizure and became unresponsive due to bleeding causing pressure on the brain. My wife was home with the twins and had to take them by ambulance to the ER where the tumor was detected.
This Thursday, Sammy had a fever of 102.7 so I took him to the doctors office, while we where there he started shaking and just after the doctor had examined him without finding any reason for the fever, he started a seizure. His muscles tensed up and his eyes rolled back into his eyes and his fever spiked at 104.7. He became unresponsive and we had to take him to the ER by ambulance, a lot similar to the path Lily took almost 2 years ago. The doctor and the paramedics where only expecting a febrile seizure but the scenario was all too familiar.
At the ER Sammy started to react again, and after checking for urine infection and a chest x-ray, they still didn't find any reason for his high fever. The ER doctor concurred with Sammy's own doctor that it was most likely a febrile seizure and because he have already had a MRI to check for tumors, it was not needed at this point. It was quite a scare and probably a good thing I took him to the doctor so Gennie didn't have to relive the whole situation again.
We where sent home with a Motrin/Tylenol cocktail to give him every 3 hours around the clock to keep his fever in check and antibiotics to fight any infection. We will have to keep a close eye on his temperature from now on, when any rapid change in temperature can cause the febrile seizure. He temperature have since then reach normal levels and he has gotten his energy back.
We still have no update on Lily's MRI, so if you would still keep her in your thoughts and prayers, we really appreciate it.
This Thursday, Sammy had a fever of 102.7 so I took him to the doctors office, while we where there he started shaking and just after the doctor had examined him without finding any reason for the fever, he started a seizure. His muscles tensed up and his eyes rolled back into his eyes and his fever spiked at 104.7. He became unresponsive and we had to take him to the ER by ambulance, a lot similar to the path Lily took almost 2 years ago. The doctor and the paramedics where only expecting a febrile seizure but the scenario was all too familiar.
At the ER Sammy started to react again, and after checking for urine infection and a chest x-ray, they still didn't find any reason for his high fever. The ER doctor concurred with Sammy's own doctor that it was most likely a febrile seizure and because he have already had a MRI to check for tumors, it was not needed at this point. It was quite a scare and probably a good thing I took him to the doctor so Gennie didn't have to relive the whole situation again.
We where sent home with a Motrin/Tylenol cocktail to give him every 3 hours around the clock to keep his fever in check and antibiotics to fight any infection. We will have to keep a close eye on his temperature from now on, when any rapid change in temperature can cause the febrile seizure. He temperature have since then reach normal levels and he has gotten his energy back.
We still have no update on Lily's MRI, so if you would still keep her in your thoughts and prayers, we really appreciate it.
Monday, June 6, 2011
MRI time...
(Gennie's e-mail update)
Oh man despite Lily having to have her MRI every three months, I would have thought that things would be routine by now...but yet again they have changed their policies and now I can't book her MRI until Lily has seen her oncologist and then I have to wait for the oncologist's office to fax the appointment notes over before they will schedule it. Never a dull moment! So Lily's MRI will be this coming Wednesday, June 8. If you could keep her in your thoughts and prayers for the next couple of days I would really appreciate it.
Oh man despite Lily having to have her MRI every three months, I would have thought that things would be routine by now...but yet again they have changed their policies and now I can't book her MRI until Lily has seen her oncologist and then I have to wait for the oncologist's office to fax the appointment notes over before they will schedule it. Never a dull moment! So Lily's MRI will be this coming Wednesday, June 8. If you could keep her in your thoughts and prayers for the next couple of days I would really appreciate it.
Lily continues to develop at a good pace. All her therapies (OT, PT and Speech) are really helping her. Her fighter personality is really coming out, she has even made Sammy and Danika fear her! :-) I have yet to get it on video but it's pretty hilarious! She definitely is not a pushover!
In April, we attended Ronald McDonald Camp for Good Times, a camp for cancer patients and their families and it was amazing the stories we heard and people we came into contact with and how they are dealing with everything is inspiring. The camp was a real eye-opener for Magnus since he doesn't come into contact with them on a weekly basis like I do. This camp has compelled him to start a Congenital Glioblastoma group on Facebook and have found 10 other families that have children with this brain tumor. Three of them being 4-5 years old now which gives us hope!!!
Thanks again for keeping Lily in your thoughts and prayers, we really appreciate it.
Wednesday, June 1, 2011
Others stories
I have now found 10 other cases so far of infants with the same tumor as Lily. Some of them are from articles on the internet, so I thought I would post them here so people can have a look at other kids in this situation.
Connor
Abby
Bryson
Elise
Riley
Aleah
Sinead
Scarlett
It's amazing to see this many kids doing good, even being considered cured in some cases, when the doctors had such low expectations when they where first diagnosed.
Connor
Abby
Bryson
Elise
Riley
Aleah
Sinead
Scarlett
It's amazing to see this many kids doing good, even being considered cured in some cases, when the doctors had such low expectations when they where first diagnosed.
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