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.

Peach's NEET FEET and Justin Bieber makes me happy!

So first things first, we were not able say anything before Skylar met the Bieb but I had to take it a step further....

When I heard that she would get to meet him I gave Madison founder of Peach's Neet Feet a call right away.  Since Justin's been interested in pediatric cancer and has given AT/RT media coverage specifically I wanted to see if somehow we could bring it full circle.  So I asked if she would be willing to rush and make a pair for JB and she gracously did!  She actually put over 7 hours into his pair and sent them overnight for Skylar to give to him! 

So at the meet and greet they said no gifts but Rachel made sure to talk with his agent and he said he would get it that night for sure.  Security just had to look through it for him.  I had earlier put in a card thanking him for bringing awareness to pediatric cancer with our whole family on the cover of the card with Elan looking especially "cancerish" so hopefully he will get it.  I thanked him for bringing awareness plus joy to kids and parents in the most dire circumstances.  No matter how happy a face you put on it is not a fun road to travel.  The time in the hospital is the worst as hours and days fade into each other so anything to break it up is wonderful.

We of course did a photo shoot before sending them on:

Elan wearing Justin's shoes.  Elan's are now too small for him to wear but not too small for him to play with!

Channel 6 Coverage of Skylar and Elan about Justin Bieber!

Here is a much better story of Elan and Skylar done by the local NBC channel.  They even put in photos of Elan during his treatment in July when she gave Elan the money.
http://www.wcnc.com/news/local/Young-girl-gets-Bieber-tickets-for-good--187829881.html

Skylar, Elan and Justin Bieber???? See what Elan was able to give Skylar!!!

Remember how our dear 10 year old friend, Skylar, gave up her savings for Justin Bieber tickets back in July?  Well I have been in contact with Stacey Hepp with Radio Disney over this since September and they called a few days ago and gave her two tickets and she is going to meet him too!!!  They were able to get them in conjunction with Ed Camp with the Epicenter so really great team work!  How unbelibable or unbelievable, right???? :)  

We were on the local news last night... here is the link to see it!  

10-year-old gives savings for Bieber concert to cancer patient

We also had an interview tonight with channel 6 which will air at 11 PM.  Skylar was so poised, I was so proud of her!  It feels so great to be able to make an example out of someone doing something we all should be doing.  Sad that not all kids are raised to be so generous.  Her parents are top notch and are raising 4 very kind, beautiful and generous girls.  This is really just one example of thousands of things these 4 girls have done for us and Elan!  It is such an important thing for all of us to remember that it isn't how much you have to give but the willingness to do it.

Food & Supplements - Information for other AT/RT and cancer patients

So many have asked what exactly we feed Elan...   If you are just starting this journey and searched "AT/RT blogs" I hope this is some help and can save you some time!  The first part is his food and the second are his supplements.

First off, I spent hours researching Anti Cancer foods and was BEYOND overwhelmed.  One food was good according to one source, another site/ book it is bad etc.  So I ended up going to a to a Traditional Chinese Medicine herbalist/chiropractor/nutritionist here in town to get assistance as to the best diet and to get him on whole food supplements which are hard to find.  This was the first week he was released from the hospital back in March/April 2012.  Thankfully we eat quite healthy so it wasn't a huge change for grocery shopping.

Since he has a Mickey or in other words, "a hole in his stomach" we can literally push food into with a syringe, we can give him exactly what we want for the most part.  Of course he is now eating by mouth as well, which makes things more challenging as most 2 year old love crackers (of course not the gluten free variety), milk (not on diet) and basically anything else not on his diet.  We try our absolute best to stick completely to the diet.  We are quite strict about the dairy and gluten as his right eye gets red and then cloudy if he has it so a double whammy.  We try our best to do gluten free, sugar free (and not any substitutes either), hormone free, organic free range etc. 

The best reference we found but did modify a bit was Anti Cancer: A new way of life

Author:

Servan-Schreiber, David

ISBN:

9780670021642

Honestly, this is really how all of us should eat.


Here is the ideal diet per multiple sources and seems to be working:

No gluten (wheat)
No sugar
No dairy (no cow but goat OK)
No processed foods at all
No soy

no peanuts (he eats sunflower butter as if it was a food group though)

All organic, free range, pesticide free "hippy dippy" foods. We do give him beef but organic, free range etc.  It is good for his iron as well as brain to rebuild synapses.

What do we normally put in his feeding tube food?  As I mentioned in an earlier blog, the nutritionists all wanted us to give Elan Pediasure which we felt wasn't for us as all it has in it is chemicals.  We turned this down and asked for a whole food alternative (notice I had to ask, not given options).  They then gave us a brand called Complete.  The 2nd ingredient was high fructose corn syrup.  Even if you don't believe that sugar feeds cancer why chance it, right?  I can guarentee if any oncologist or nutritionist had their kid get cancer they wouldn't feed them Pediasure.

I have always been interested in food and eating right.  It was pretty much a done deal when there wasn't another alternative that we would just make his food.  It is sad that cancer kids are not given healthy alternatives by the medical community - they do exist but insurance doesn't cover :(.  One brand we have used is Juvo.  

we put a variety of the following almost every time:

FOOD:

Beets, kale, spinach, green beans, broccoli, mint, garlic, onions, bok choy, cauliflower, Brussels sprouts, cabbage, sweet potatoes, raspberries, blueberries, cranberries, quinua, lentils chicken, beef, eggs, flax seed, and for the liquid we use hemp milk (higher calories) and his Brain tea from the Traditional Chinese Medicine doctor (see below)

What he eats by mouth (he didn't eat anything at first when we left the hospital but now he eats the following things as of today):

 sunflower butter by the jar!, bananas, apple slices, gluten free cereals, gluten free foods we make our selves many muffins etc that kids like as trying to do preservative free, goat milk but only 1 cup a day but we water it down so he can have more, goat cheese slices from Trader Joes, carrots (of course only with us watching him as a hawk), goat milk based yogurt, and he LOVES hot dogs - organic, grass fed etc.  

So by "we" I mean my mother Lolly lately.  She has been so helpful!  She made a ton of it and put in canning Ball jars so we could freeze them and have several weeks made up and just grab one at night for it to be ready in the morning.  We then heat it up in a ceramic container (we can't us metal as it apparetly interferes with his Brain Tea from Dr Guo.

homemade gluten free muffins one he really likes right now to give you an idea.

http://peasandthankyou.com/2012/08/29/morning-glory-muffins/

We also have a water filter system with its own faucet on our kitchen sink.  I wouldn't buy the one we have but I suggest going to Lowes or Home Depot to get one - they run around $160 but good to filter stuff out anyway. Reverse osmosis systems take out good minerals so we opted for just a good filter system.  I was WAY overwhelmed by all the cancer sites that have filter systems for thousands of dollars but the integrative doctors, chiropractors and TCM all say just get a system that takes out junk and we can only do so much.

how we heat up his food (supplements added in)

Freezer with food.  About 1 jar a day.

SUPPLEMENTS:

I found out almost all you can buy at a Whole Foods type store are really not 100% whole foods based.  the day Elan was released from the hospital Erik and I went to EarthFare (like Whole Foods) and spend hundreds on supplements only to find out that most had syntetics and were not 100% food based.  Apparently companies can claim whole food but it only needs to be 10% to be labeled whole food.  We found you really need to research to find a true 100% whole food based suppliments.  We are using Standard Process and Medi Herbs right now.  He hasn't had any stomach issues etc.  He used all of them even during radiation as they said as they are food based not to worry. We went this route at first because we knew they were good quality and we needed real direction by someone properly trained (ie not a $10 per hr person at a organic store).  Here is who we go to here in town: http://www.synergycharlotte.com/index.html

Below is what he takes right now.  We started with just the herbs/suppliments from Synergy here in town but the cancer continued to grow so we know we need more than just that.  We had him doing just the suppliments up until May 30th when he started Proton Beam Therapy in Indiana.   

BTW - We didn't know that you could just call as parents to refer your child to Proton Beam radiation but you can!  THis site is new and a great resource.  Wish it was all here when we were researching back in Feb 2012!  Dr. Douglas was ELan's main doctor but Dr. Buchsbaum is also a pediatric doctor there:

http://iuhealthprotontherapy.org/what-is-proton-therapy/?gclid=CPvJ_7f_x7QCFRQcnAoddjAApA

We then went to a Tradional Chinese Doctor in Chicago our first weekend when we were in Indiana as we knew a few brain tumor adults that had success with him.  His name is Dr. Guo and he is a trained oncologist in China but doesn't practice oncology in the states.  Of course in true stereotypical chinese doctor style he told us we were killing our child with radiation so be prepared for that if you go to him!  However, we do feel the tea is doing something for Elan so worth a shot!  He is respected by many in the field and if you are going to pursue TCM (traditional chinese medicine) and are in Indiana worth 4 hour drive for a visit.  It is a real chinese place so be prepared to have to ask all to repeat themselves a few times :)

http://www.liferising.com/

He looked at Elan and gave us his "ACE brain tea" which is a boil tea.  There are specific directions you have to use to boil the tea including a non medal pot (really hard to find but the way! We ended up spending $40 for a ceramic one when in bloomington!)

Fortuately Elan is small so we use one tea packet for 3 days and it is around $7 per tea packet.  He also gave us a few other things too which we still give him. 

THe other thing we give Elan which we were worried about and stopped but have him back on it is B17.  He did 3 months of 1000 MG and now on 500 MG "maintenance"  honestly he had no issues with stomach etc.  If he did we would stop. We get it through here:

http://www.laetrilesupply.com/cgi-bin/MyStore/perlshop.cgi

How we cook his food

The $40 tea pot for Dr. Guo's tea

Step by step how we make his supplements - we mix them all 1 time each week on Sunday night:

1.  Put kids to bed...
2.

a glass of wine :)!

what he takes right now.

put in a bullet (we have an off brand one and it works great!)

and keep in a drawer.  One in AM food and one in PM food.

Trip to Mountains - tubing

On Sunday we decided to head to the mountains to let the boys see some snow.  We heard great things about Jonas Mountain Tubing and they let kids under 3 go so we decided to give it a try.  We had a great time!  Elan only was up to about 1 hr of it but still fun.  Only thing was of course it was crowded but still a great time!

FInn hiding

Finn was thrilled as he was able to go down by himself!  The rule was kids under

6 had to be with a parent but the guy let him go alone!

sunset on way home!





then on Monday Erik off at 1 so we walked to get ice cream for Finn and Peter rabbit applesauce for Elan (he can't have dairy - you can tell the days he gets it by his eye being red!)