This Week

Elan continues to do really well.  This week he has had a pretty bad cold though as has Finn.  Not enough to keep either down but enough to add a level of crankiness.  Erik and I are also cranky as a cold means multiple times being woken up during the night :).

We took Elan in for a consultation for Hyperbaric Chamber treatment last week which may help with his balance and scarring from radiation.  We haven't decided for sure to do it but at least wanted to check it out.  There was a wonderful doctor who is also a pediatrician that did his evaluation.  She practices about an hour from our house and is also an integrative doctor so good to talk with her about his diet and supplements.  Just keep it up is all she said, as does anyone else who is an integrative doctor.  She did say he had an ear infection, so a 2 for 1 appointment :). I really don't want to put him on antibiotics but we have been giving him ibuprofen before bed.  Today he seems much better so hopefully we won't need to put him on anything!

Other news... about 2 months ago I became in contact with a lovely young family from Canada through the AT/RT Facebook group.  This is basically a group of parents sharing ideas that have worked for their kids as well as getting help with consults, recommendations for second opinions etc.  Unlike what one would hope, there is no network for AT/RT established so we basically had to create one.  I am so glad it is now available as we didn't have it when Elan was first diagnosed.  Well they have a super adorable boy named Rylan who was diagnosed with AT/RT in March (a month later than Elan).  He had a very unusual AT/RT tumor as it started outside of the brain, actually on his shoulder - possibly the only known case.  I was in contact with them since they were looking for help regarding proton beam radiation.  I was able to help her get into Indiana Proton Beam center!  They had quite a fight of their own to get in - even having to ask the Canadian government for approval - so we were all thrilled when Rylan was accepted by them!   We were even able to talk on the phone a few times and TRIED to Skype so Elan and Rylan could see each other!  It was a bit of technical issues though!

Well our dear little friend Rylan, was sent home 2 weeks ago because his cancer continued to spread even during treatment. We heard that he passed away a few days ago.  Please consider posting a thought on their Facebook page of encouragement for the family.

http://www.facebook.com/RibbonsForRylan

Rylan really is one of a handful we are in direct contact with as he was diagnosed at the same time as Elan and reached out to us for help.  Any child passing away from a disease your child has, of course is quite upsetting, but one you have been personally involved with is even more so.  Needless to say it brings us down a bit and makes all we have gone through back into our lives.

They have been such strong, faithful and loving parents.  I am so proud of how smart and humane they have been with the decisions they made regarding Rylan.  They are in they're early 20's and having to make decisions no person should ever have to make.  Even when faced with being sent home they have been prayerful and positive in attitude.  All prayers for Rylan not suffering and having a humane passing were answered.  What a true blessing for them!

Erik and I are of course comforted in our hope promised in the Bible of a time when the world will have no more cancer or any type of sickness along with no more death.  Scriptures such as 1 Corinthians 15:25 and 26 plus Isaiah 35: 5, 6 and Isaiah 33:24 give us real comfort to continue on and know that no matter what all of us will be happy and HEALTHY in the future.  This of course doesn't take the scariness away but does help us to keep grounded.  No one wants anything like this to happen and we are so fortunate for the outcome we are so far experiencing.  It is just so upsetting that not all kids are able to beat this.  Right now odds are 1 in 10 are survivors long term (meaning 5 years from diagnosis).  But we are hopeful!!!

construction/baking

Check out what we scored from the neighbor!  The moved to California and couldn't take so they gave it to us!!!

Finn now wearing big boy boxers!  Striking a superstar pose...

2 houses down was a complete remodel and we have been watching for months but this day the driveway put in... so loads of cement trucks and a cat to watch!  Too bad freezing as only stayed a bit.

On my tricycle!

LEGO cup!  Big hit and great for speech therapy! 

Gifts from Lisa and family in Florida!  Thanks so much for thinking of us!

Here are several videos of the boys hanging out at home.  Finn found this Blues, Brews and BBQ CD and has been dancing around like a crazy boy.  I really wonder where on earth he learned some of these moves.

Last thing we went to the dentist and both boys look great!  I have to take Elan back for a 3 month check up as teeth are effected by radiation but so far no cavities!  Dr. Savage is so sweet!  Good marketing too... both boys were given a t shirt for first cleaning and then the cute picture above.  Can you see how excited Finn was?  He was the one that helped with Finn a year and a half ago when he fell and knocked out his front tooth at the spray park.  One of our friends from our congregation is a dental assistant in the office so we were able to chat with her a second as well!  I always have a hard time telling the whole story to doctors but he was really kind about it.