Thursday, May 21, 2015

Aweseome Raphael Update

Awesome Raphael Lipof

Heres the update for those interested.

Today marked day 3 (of 30) of radiation however yesterday was a bust (raphael was having breathing issues so they could not proceed).   Besides being zombie like exhausted (which I'm pretty used to), it's actually been a quite pleasant experience.  I would liken the difference from a public hospital to a private hospital to the difference between a spa and hell.

We walk in the door daily and are warmly greeted by staff that actually know our names and even doles out hugs at a whim.  They have a iPad jacked with cool 6 year boys games that enters Raphael's hands the moment they see him.  There is a fire place and cozy chairs every where. Good coffee, snacks galore and smut magazines.  Most important, we are treated like actually human beings by compassionate staff that even makes eye contact and hugs me too. .  So far I haven't cried their yet.  I end up crying at least twice per every visit we have at NYU.  So for me, the not crying, if you know me, is a big deal.  They are treating both Raphael and I with so much kindness and that alone goes very far in my book.

So the drive sucks, I've almost gotten hit by trucks a few times but it's getting easier every day.
we leave at 6:30 every morning and are generally done with treatment by 11.  Yesterday Raphael wanted to go to school.  He's very concerned that his little brother will get his blue belt in karate before him.  He even told me he has actual night mares about it.  So the doctor said if he's up for it why not.  So I dropped in off and the moment I arrived home his teachers called to pick him up because he wasn't feeling good.  Dizzy and his port was itching.  I'm convinced he just wanted to show off his bandages and who could blame him?  His friends are super impressed and he loves to have them touch it.

So today, I just felt like he needed a boost and discovered chuck e cheese was 5 miles from the hospital.   $50 dollars later and the place to our selves Raphael told me "mommy my dreams came true today and I love you so much".  I was dreading chuck cheese but every moment was worth it and I actually had a lot of fun feeding the tickets to the machines that tallies the numbers.  And yes, I cried.

We got home at 3 and both took a nap, went to the park, played connect four and are now anxiously awaiting the rest of the crew while I am having a glass of white yummy wine.  Ron in route with other kids.

Lasty, we have been overwhelmed with the kindness and generosity of our community.  We have come home to freshly cooked meal from different friends every night.  Of course, you guessed it, I cry each time.  We are so lucky and we love our friends and awesome community.  Thank you thank you thank you.

Also, and I know this is repetitive but every day at lease 5 people asks what they could do and what we want more than anything is donations in Raphael's honer to fund research for this disgusting disease that had NO CURE at the moment.  If you can do that, I'll be thankful thru my tears.   Here is the link.  New site being built and will be up next week.  ignore the fly wheel part.  Again, no amount 2 small and every donation this month will be matched by a generous person in the ctf fairy land.

We love all of you so much and can not thank you enough.


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