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.