Lily update

For some reason Lily's last MRI, 3 months ago, seemed like it took place longer ago than that. I guess it's been a busy summer. :-) Lily is scheduled to have her next MRI on Wednesday, September 21. Can you guys keep her in your prayers?  We are anxiously awaiting for her oncologist to move her MRIs to every 4 months but her cancer is rare so they want to stay on the cautionary stage and keep scanning her every 3 months.

 

Lily has officially entered her 'Terrible Twos' and we have nicknamed her 'Bully Lily'.  She is very headstrong and bosses Sammy and Danika around.  I can't complain because it is this same fighting spirit that has allowed her to overcome the obstacles she faces with the side effects of the chemo, tumor and surgery. She continues to do well in her therapies but her therapists tell me that they have to be creative to make her do things since she is showing her stubborness and fighting them to do her exercises.  She even started telling them "I don't wanna" which has been an effort for them to not bust out laughing.  She had a neuro-psych evaluation and her psychologist gave us a couple of things to watch for but he said that the tests he gave her all had average results which was good given that she had brain surgery at such a young age.  He definitely thinks all the therapies she is getting is helping. Thank God for early intervention programs!

 

As a family, we are getting excited for the CHOC Walk in October! I'm looking forward to our team raising awareness on childhood brain tumors and showing our gratitude for all that CHOC has given to our family.

Lets Walk!

The Children's Hospital of Orange County is where Lily's life was saved more than two years ago and where all her treatment was done during her sickness, she also continues to get treatment and checkups at that hospital. CHOC is a non-profit hospital and relies on community support to be able to supply the excellent care they are giving children so as a little way of giving back we will form a team for the annual CHOC Walk in the Park to support the hospital.

We have set up a team page for the CHOC Walk to accept donations to support the hospital.

Team Lily

And there is a Facebook page setup for the team.

Please Help Support Team Lily-CHOC Walk in the Park 2011

We also made a slide show about Lily's journey since her diagnose for the walk.

Why We Walk

We hope you will consider joining our team or donate to a walker and help us support the cause!

Survival numbers

The kind of tumor that Lily was diagnosed with is very rare and I have been looking for data in the medical literature to get more information about it. I have found 48 reported cases of CGBM since the first documented case in 1917, most being reported in the last 30 years.

I wanted to know more about survival rates so I was trying to find the length of survival from the documentation and it shows that even if the outcome is considered bleak at initial diagnosis, it looks like the worst time is very early after the diagnosis. Note that the statistical sampling in this case is very small, out of the 48 cases, only 39 contained survival information and they only reported the status at the writing of the respective report.

The largest percentage of patients didn't even survive the first week, with 15 cases passing away with this time. Within 4 month another 11 had past away with 1 patient alive at 2 months when the report on that case was written. At 1 year, 4 more cases was reported as deceased.

After the first year, the case reports shows 7 patents still alive with the oldest being 6 years of age. Only one case was reported of a patient not surviving after 1 years age, with a 27 month old passing on.

It looks like the survival rate radically increases if the patient survives the first year after diagnosis, but it is hard to make some real conclusions with such a small amount of data. I can't help to feel cautiously optimistic when Lily now is at 2 year after diagnosis and still have no recurrence.

Second Anniversary

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!!!

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.

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.

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.

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.