Improvised toys...

The twins are coming up with new ways to use everyday items....

San Diego Zoo

The whole family went to the San Diego Zoo for a nice day out. The kids (and grownups) enjoyed the very nice day and the twins got to see a lot of amazing animals in person. I highly recommend a visit to the San Diego Zoo, and if you are local, becoming a member of the Zoo is an excellent value with free admission to both the Zoo and the Safari Park for a whole year plus a number of discounts and other perks.

CHOC Walk At The Park

Each year a walk is arranged to raise funds for the Children's Hospital of Orange County which was the hospital where Lily's life was saved, her chemo treatment was done and where she continues to go for checkups. We are immensely grateful for the excellent care she received at the hospital and would like give back in any small way we can, so for this year we decided to join the walk which go through Disneyland and the neighboring California Adventure Park.

With our friends and family, we created Team Lily which reached 32 members and managed to raise more that $11,000 for this worthy cause.

The Walk day started out really early when more that 14,000 people have to manage to get to the plaza in front of Disneyland, this meant long lines to get into the resort area and the parking lot. We managed to get the whole group gathered by about 6:45am with the start of the walk being at 7am, not bad for a gang of first timers. It was quite en intense scene with all the people walking along the Main Street of Disneyland, both in a positive way with all the support shown to the hospital but also sobering when there was a lot of groups walking In Memory of... or For Our Angel... This makes you realize how fortunate we are with our miracle the is Lily. 

Along the route a number of Disney characters did "cameos" and cheered on the walkers. It all started  Mickey and the MC at the end off Main Street. The MC could not ignore our neon-yellow shirt and gave us a nice "shout-out" on the may by, mission accomplished. At the carrousel in Fantasyland, the Disney princesses was riding around, which got all the girls really excited.

When the walk was before the opening of the park, and the route was all set up, there was certain areas with no people in it at all, so we managed to get a picture of Lily by the castle with no people around! That doesn't happen very often.

Group picture by the giant Mickey pumpkin, I think we will make this a tradition.

When passing from Disneyland to California Adventure, a bunch of the local high schools had their bands and cheerleader cheering on the walkers, it was moving to hear 20 or so cheerleaders starting a cheer for Team Lily, and high fiving Lily as she walked by. I just regret that I didn't manage to record that part of our walk.

After finishing off the walk a Downtown Disney, we had our team brunch at a local restaurant so we could give a small thanks to all the wonderful people in our team which did such a great job fundraising for CHOC and made the whole walk such a wonderful experience. This will be a yearly occurrence for  Team Lily from now on, and even if we might not be able to put this much effort in every year, we will plan for a big celebration and fund raising effort for Lily's  year anniversary when she will be considered cancer free!

Lily MRI Result

Still Clear!!! Thank God!! I was shocked to get a phone call from Lily's pediatrician's office telling me that they had the MRI results. They told me that they think that they had faxed the results right after the MRI -- me and Magnus noticed that the hospital was pretty quiet yesterday so I guess they were able to get out the results right away.

Thanks so much for all your prayers, thoughts and well wishes!!  I hope I am not using up my favors but can you guy's keep my cousin's daughter/my god-daughter, Vivian in your thoughts and prayers?  She is in the NICU and has been pretty stable but developed an intestinal infection and is currently on antibiotics.  The next 24 hours are critical because if the antibiotics don't work they will have to do surgery on her.  She has just been through a critical heart surgery a month prior and is such a fighter but could use positive thoughts and prayers. Also please say a prayer for her parents and her twin sister. Thanks!

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.

First Disneyland visit

The twins went to Disneyland for the first time. They had a really good time, but might not be ready for some of the rides yet. Their favorite was Smallworld while Pirates of the Caribbean might have scared Sammy for many years to come...

The fireworks also scared Sammy, he doesn't like loud sounds, specially not when he is tired as after a whole day at Disneyland without nap.

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.

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.

Looking for others

I recently started thinking about other families in the same situation as us, so I began looking on the Internet for infants affected by Glioblastoma Multiforme.  The infant GBM is quite rare so there is not a lot of documented cases available and it can be hard to find the infant cases within the mass of cases in older population.  It took a while but by finding blogs that mentioned other blogs and some rare online article I have managed to find 6 other infants that had been diagnosed with GBM.  I have been able to get in touch with most of the families and received encouragement from their stories.  The children's age range from more than 4 years old to just 7 months, and it looks like the bleak outlook we where initially given might not have been the only truth when some of them has been cancer free so long now that they are considered cured!

With Lily coming up on 2 years since the tumor was removed and still no relapse, we hope and pray that she will join the growing number of children that beat this sickness.

New old pictures

I went through some earlier pictures of Lily and added some to the posts.

The pictures from the hospital still stirs a lot of emotions.  Seeing such a innocent child being in a vulnerable situation still hits hard even after 2 years.

But then I see Lily and realize what an long way she has come and everything feels a lot better.  We still have a long way to go, but we are so blessed to have her in our life.

A "normal" life

After almost a year off chemotherapy, things have been settling in to a more normal routine. If you can consider two session of OT, two sessions of PT and two sessions of speech therapy every week, MRI and oncology visits every 3 months, neurology every 6 months besides the normal pedriatic doctors visit and the extra visits to catch up on the immuninzations that was missed during the chemotherapy. This is still a lot easier than the strain of chemotherapy and all the possible complications that you have to consider during that time.

Recreated

I have finally recreated a blog based on the e-mail updates that my wife sent out to keep people posted on Lily's progress during her fight with the glioblastoma multiforme (GBM) that she was diagnosed with at 4 month of age.

The postings are more or less directly copied from these e-mail, so Gennie should have all the credit for the content in this blog.

Camp

This is the first post written by me, Magnus. The earlier post are all Gennies e-mail updates that I added to this blog.

We spent the weekend at camp thanks to Camp Ronald McDonald for a Good Time.  The camp is specifically for pediatric oncology patients and their families and they have medical staff available for the patients at all times.  We had a wonderful time with families in similar situation as us and a very helpful staff.  Danika loved the camp life and was ready to go to the next camp even before we left.  The twins (Sammy especially) loved roaming around the grounds and the volunteers helped keeping track of him, which is a full time job :-)

It was our first real "vacation" since Lily and Sammy was born and not only was it relaxing, but interacting with the other families was uplifting.  Spending time with people that share a situation like a kid with a very serious illness and see the strength this give to families gives insight in your own situation.

Looking forward to go back next year.

ALL CLEAR for Lily!!!

Whew after a crazy last 4 days, the oncologist called and said that Lily's scan 
results are still clear!!!  Yippee!  Thanks SO much for all your emails, 
thoughts and prayers!!!  I was reading the emails during Lily's MRI while in the 
waiting room and they helped calm me. 
 
The MRI almost didn't happen on Wednesday and we were supposed to get the 
results yesterday at Lily's oncologist appointment but Mission MRI Imaging hired 
a new person who is doing everything by the book so CHOC oncology couldn't get 
the results in time for Lily's appointment since the new person had sent it to 
medical records instead of faxing it to the oncology clinic.  I swear you would 
think that since Lily gets her scans every 3 months, things would become routine 
but each time something different happens -- never a dull moment! :-)  I'm just 
SO SO happy that she is still clear! 
 
Hope you all have a wonderful weekend!!!

Lily's MRI scheduled for this Wednesday

It's that time again...Lily's 3 month MRI.  She will be having her MRI done this 
Wednesday, March 9 at 9:00 am.  Yup on Ash Wednesday!  So for those of you that 
are getting your ashes that morning, can you say a little prayer that her scan 
is still clear?  And as always, it would mean the world to me if you please keep 
her in your thoughts and prayers the next couple of days. We have an appointment 
with the oncologist the day after her MRI on Thursday, so hopefully they will 
have the results of Lily's MRI at the appointment and I will be able to let you 
all know the results soon after. 
 
The twins just turned 2 last Saturday and I couldn't help getting teary-eyed 
while watching Lily daintily pick at her cupcake and think what a miracle we 
have been graced with.  She's come a LONG way and she's a fighter! So why am I 
nervous about her scan?!?!?  I just can't wait for the day when I won't feel so 
anxious about her scans.  I guess it's just my nature to be a natural worry wart 
but your thoughts and prayers make these stressful scans more bearable and I 
truly believe she is doing well because of it! 
 
So thank you from the bottom of my heart!