100,000 Angels

Our son Rafael Elisha was stricken with a rare malignant brain tumor and after trying several mainstream treatments to no avail, we discovered that a clinical trail that was not approved by the FDA might have the potential to save his life.

A massive, widespread campaign was launched to  garner 100,000 signatures necessary to request that the FDA grant us permission to use this therapy. 

 FDA did approve the drug for compassionate use

 BUT IT WAS TOO LATE!!!

Our son was already in a coma and  brain dead.

They call it compassionate granting BUT there was NO compassion in it for us.

In my opinion when families face NO more options, Compassionate granting should be a board  review that takes 12 hours..and grants the use of the medication without having to waist time petitioning....

TIME is of the essence...LIFE is so precious!!

The good news is, the clinical trail we fought  for did open up for others and we are hoping and praying for good news for those that are on that trail.

THE truth is there are no good answers for childhood cancer and we desperately  need More funding and MORE research for safer and more effective treatments!!!!!

                         September is childhood cancer awareness month!

               Please pray for all the kids in the world that are battling cancer                                                   right NOW 

                                 One hundred thousand  Angels

                      

                              poem written with tears by Elisha's Ima

One bright morning my little flower
a storm was coming our way
And you were so strong and stood it's way

And rest upon you the spirit of Hashem the spirit of wisdom and strength.

 You stood so tall
With dignity and gracefulness above all

One hundred thousand  voices calling out your name
One hundred thousand  hearts beating
All the same
a million cries and prayers yearning in the dark
Oh, son you lifted us to the highest heights
Higher than the stars
Your soul shine so bright

One hundred thousand people  reaching out to G-D
One hundred thousand  whispers uttering your name
A million psalms and mitzvot floating up above
Oh, son you lifted us to the highest heights
Higher than the stars
Your soul shine oh so bright

Oh, the light shine so bright
Our eyes can NOT see that sight

One hundred thousand  angels  come to escort you our son
Elisha our hero
You tikun here is done

How fortunate we are that you have touched our lives

Please check out for Elisha's brachos project

www.zichronelisha.com

Oh ! I never thought I would blog about my son dying ..being gone ...
Its so surreal,  unreal...CRAZY!
Can not  believe it happened to us!!!
I have decided to start a blog for a few reasons:
ONE ...I am  so sad and broken, it will be therapeutic for me.
Second ...I hope to help others on this terrifying journey that we do not choose!
Third...I hope  to raise awareness to pediatric cancer and the desperate need for better research.
and hopefully get involved in raising funds for targeted therapies that are effective and safer for OUR kids.
Forth....try to focus on the blessings in our lives!

I thank you in advanced for your listening ear and any feedback would be greatly appreciated !!!

The coming week is very emotional for me ...My kids are starting school next week and IT will be the first time Elisha will not be going to school ...no registration form to be filled out, no new school clothes to buy, no spider-man lunch bag to pack.
no petting down Elisha to see if he did not sneak toys from home into the school zone.
no Elisha waiting in carpool holding onto his little sisters Shayna's hand, no frantic look for his shoes that were in the toy box.   NO ELISHA!!!

                                                   SADDEST DOOR IN OUR HOUSE!!!

Last year at this time we were after a long year of a grueling protocol surgery radiation chemo...
last year in August we were on the road  to recovery ...we were on top of the world!
we thought Elisha was clear .
We were doing intense therapies ...every day for Elisha to relearn how to walk, swallow, and get stronger.

I got him some cool school clothes ...he got so tall in spite of the harsh protocol.
we got him a cool spider-man backpack and spider-man lunch bag.(even though he did not swallow he wanted to look like the other kids..so i put lolly pops for him to suck).

The decision was to put him with the younger kids ...we felt that it would be easier for him,
He was not so pleased about it..but what a sport he was!  he made the best of it!!!
He was really happy to have Morah Darlene again and that was a great bonus!

Our happiness was short lived. Elisha had an MRI done right before Sukkot...
THE beast was back and OUR Elisha was terminally ill!
Aggressive brain tumor was taking over his precious brain...Oh what a brain he had! so smart!!!!

a week before his 6th Birthday we were told that this is going to be his last one!!!

If it was not for Hashem i don't know ..how we survived the coming nightmarish months ...
Elisha passed away April 16th 2014.
                                                                                          the nurses gift to us... last day

Our SWEET boy how we miss you!!!!

a poem by Juli Round who lost her son to cancer,
her words really resonate with me 

GOOD NIGHT OUR HERO

To be brave is to cry
But still to fight on, 
And that's what you did
Our hero, our son.

The battle was hard
We thought we had won,
But still you fought on
Our hero, our son.

The happiness you brought 
To the lives you have touched,
Will live on forever
As you are loved so much.

when we close our eyes we can see you,
When we whisper your name we can hear you,
And when we reach with our hearts we can touch you.

Goodnight our hero, our son, our Dan,
You are just a child
But you have died a man.


More about Elisha's journey and his heroic battle in future posts.....

Please pray for us for a Shana Tova and strength!
                        Shana Tova to y'all!!!
                          check out our website for Mitzva projects in honor of Elisha 
                                          www.zichronelisha.com