Stealing words from a wise friend, we just "keep on going" thank you Emily Crabtree

Above, my sweet boy, Raphael,  helping his little sister down the stairs.  He is always kind to her, always.  It melts my heart.  He is only 6, but, he is a man (he's been thru more than I have in my 41 years so its no surprise), I gush none the less...

Many have asked me to update the blog.  Things are kinda steady, kinda not so here the update.  I tend to only write when things are in upheaval but to be perfectly honest living with a son with a very  rare and unpredictable disorder, I'm not sure that I ever feel truly unhinged.  I will say though, that being a mother in general before nf-2, I kind of felt the same (but less intensely).  We bring these beautiful humans into the world and all of a sudden, life seems beyond precious.  And, it really is.   I want to teach my kids this lesson.  How though?  I know they are happy and I know I am happier since seeing the world through their eyes so my hope is I'm doing my job.  In my heart, I just want them to feel safe, loved and mentally satiated.  I wonder though, how is that possible when I am so scared.  Thus is our journey.

So Raphael is doing amazing (to my knowledge).  He brings so much joy into my life every day.  He is like a 70  year old living in a 6 year old body.  He's patient, thoughtful and just about up for anything any time.  He also trusts me for the time being which is a gift.  I cry myself to sleep often with guilt over what this sweet little boy goes through.  But, and my friends can attest, he's truly a happy kid and I say that while holding my breath because my wish is that he continues to be so unhinged while facing such unfair circumstances.  We can all learn a lot from Raphael.  I could not be more proud to be his Mama.

I'm taking Raphael to children's hospital in Boston in 2 weeks which I mentioned in my previous post, after that, he is having his first slumber birthday party followed promptly with a MRI under sedation and a neuro appointment where we will hear - who knows what?...  To say I am holding my breath is a gigantic under statement.  I hate it.  I don't think I'll ever know what it feels like to not be frightened again.  Knowing that, makes me want to protect my children from being scared even more.  Ugh...

Lastly my tri training is still going strong and it's hilarious and so incredible.  I am truly loving it.  I'm 1 of the oldest and definitely the slowest but who cares, it's fun and in the grand scheme of things, it makes me feel like I am fighting for my son even though in reality how is me running a race helping his disorder but I'll take it.  I'd rather train and raise money then sit on my butt and cry.  I'm doing the best I can.

Once again, my fundraising link https://join.ctf.org/fundraise?fcid=559379

Please consider donating to The Childrens Tumor Foundation.  My family would be incredibly grateful. We are scared but determined to find a solution and we really need help.

Thank you for reading.

Much love,

Lara

If Raphael can do what he does, Ron and I can do a triathlon

It's been a while since my last update.  We have been busy living our lives and getting back to a normal routine in the aftermath of last summer when Raphael received 30 rounds of radiation behind his eye for a tumor which was growing.  It seems like that was years ago and I have completely detached myself from those memories.

Right now, I am hunkered down with Raphael and Charlie.  Charlie has a fever and a cold and Raphael is recovering from a neck surgery that will hopefully give his voice some more volume after a tumor on his brain stem paralized 1 of his vocal chords.
The thing with nf-2 is, whenever things seem calm, there is always something lurking in the corner to take us off of our tracks...  This is him recovering from 3 hours of surgery.  I love that face.


We anticipate some down time these next few months before his 3 monthly mri and I plan to take that time to meet with a few more specialists in Boston in the hopes that no more big surprises come my way.  Or at the very least to get a few more nf literate specialists eyes on Raphael and hopefully put some of  my worries at bay.

Additionally, Ron and I are taking our middle aged butts and getting geared up for training season for the NYC triathlon.  Our team is called Team Raphael and we are raising money in honor of my tough lil guy for The Childrens Tumor foundation.  They are working really hard on better treatments for NF and we MUST help them.  Time is of the essence.
I will attach the link to make donations at the bottom of this post and Ron and I would be so incredibly grateful if you could make a donation big or small...  We need CTF to get enough funding so 1 day I can stop fund raising.

Lastly, we want to invite all of our friends and Raphael's friends to join us in Central park on July 24th to party with Raphael after the triathlon.  Mark your calendars.  It will be a wonderful afternoon and we'll have big plans for kids and grown ups.

Here is the link for our race donations.

https://join.ctf.org/fundraise?fcid=559379

Thank you so much.

Love,
Lara

Radiation DONE! Onward and forward...

Today marked our last drive to Procure (the New Jersey hospital where Raphael has been receiving radition) for 9 months.  I can not believe it.  I feel like I need to be pinched.  I'm still in a fog.  We have a 3 month break from doctors and then back to the grind.  Brain and spine MRI, hearing test, vision test, swallow test...  I'm probably forgetting some.  Though I'm grateful and going to do my best to enjoy these next 3 months I can't pretend I'm fully relaxed but I do believe that is my "new normal" so I'll adjust.

I still spend hours researching different types of pediatric brain and spine tumors and stare at Raphael while internally talking myself down from symptoms I'm likely making up - but than again, nothing seems out of the realm anymore - he has a brain and spine tumor disorder.  When Ron gets scared or upset my fear multiplies.  He's always so steady but every once in a while he lets his guard down and while it only makes my love for him more powerful, it also makes the reality of Raphael's condition more real to me and makes me a little more scared if possible though denial would likely be way worse.

Today after leaving the hospital, (I brought Gus who wore his spider man costume for the entire 5 hours) our oncologist ordered a mri in 3 months and said barring results look as he predicts we don't have to return to Jersey for 9 months (oh and " and enjoy your summer").  I took the boys to lunch and then to the sprinklers at the park out back or our apartment.  Came up, made them dinner and stumbled upon a post on facebook  about a beautiful little girl with DIPG which is basically a incurable aggressive brain tumor that forms at the base of the brain stem and from what I understand from my internet maddness mimics the symptoms that NF-2 "can" have only very rapidly (average life span after diagnosis is 9 months) and it's horrific.  I spent the last hour reading every article I could find about it.  It turns out that 1 of the neuro surgeons we met with when discussing options for Raphael's treatment was working on a clinical trial for this rare pediatric cancer.  This made me cry.  I cried out of happiness that Raphael does not have DIPG and then out of guilt that someone else was enduring this and that I was relishing in my luck.   It's such a psychological roller coaster.  So while I will do my absolute best to enjoy these next 3 months and try not to think about brain tumors, I can't pretend that every time Raphael coughs while drinking, or trips or makes a funny face I won't feel ill.

So thats where I'm at tonight.  Hopefully all will be uneventful and this will be my last blog post for a while and I can get to all of those long over due thank you notes out to everyone that has been so generous with contributions, meals,  gifts and love etc.  I want to get back to work and back to a routine which doesn't consist of driving to the hospital.  I'm excited for the boys to start camp on Monday.  Raphael is so sick of me!!!

To end on a hi note I've attached some pics from these last few days.  We went away for a few days and had a blast.  Swam, watched beautiful sunsets, played our faces off and felt lucky.

Lastly if you want to make a donation to speed up research to cure nf-2  here is the link :

http://ctf.kintera.org/faf/home/default.asp?ievent=1140830

Enjoy the summer.  xx Lara

Belated update - awesome rapho

Today Marks treatment number 17 out of 30.  It's pretty surreal to think that I have allowed my 6 year old boy to be put under general anesthesia willingly 5 days a week and driven hours to do so  - SO many times.

1 week ago I wanted nothing less but to hide under the covers and cry.  I was feeling so sorry for myself, for my son, for my husband who I take it all out on and especially for my other 2 children who feel neglected by me and literally claw at me for hours upon our return making me lose my patience when they need my affection.  It's a 24 hour a day guilt trip.  I want to do better.

This week though, there was a big shift.  My phone beeped on my ride out to the hospital on tuesday at 7am from a wonderful friend congratulating us for making it to half way mark.  When I read the text I didn't believe it, but she was so close to right (the halfway mark would of been that day if not for some technical issues which set us back a day).  My first response was a crotchety "thanks but I wish it was today".  Later that night when I took a good look at my calendar and discovered she was in fact right, the tears flooded.  Guilt, love, gratitude.  My friend is counting down the days for us.  It was a amazing feeling to suddenly see an end to this, and more importantly have it brought to my attention by someone who loves us.  So today on our 17th day these next 13 treatments don't feel nearly as daunting knowing that we've already completed more than not.

Raphael is starting to have some minimal side effects.  His eye looks swollen and sun burned and thats really the worst of it.  We were expecting possible loss of appetite but my boy has gained 2 pounds in the last 7 days.  He sleeps the car ride home and after that, nothing slows down.  He's amazing.

Me... I go from being elated and grateful for all I have to sad and pissed within minutes.  It must be hard to be my friend so if any of my friends are reading, I'm sorry if I've hurt your feelings.

Mostly I feel self conscious.  I'm unorganized in my normal life and throwing a 5 time a week 8am arrival 2 hours away which requires a 5:30am to 6:00am wakeup just makes me a total scatter brain and I hate it.

Today was Raphael and Gus's school picnic.  The plan was that Ron would give me a break from driving to the hospital to take raph so I could attend the picnic with Gus's class and Gus would feel special and not neglected.  I woke ron and raph up, sent them out, got charlie and gus dressed and fed, prepared lunch and headed to the bus with enough time to spare to get charlie to day care and chaperone Gus all the way to school and his picnic.  Well, plan was going well until I discovered we got on the wrong bus and with no other options we had to walk 18 blocks to charlie's day care with no stroller.  She's 2..  We made it there ok though I did have to carry her for 8 of those blocks only to discover that it was teacher development day and daycare was close.  "you should read your mail" I was told. yeah, thanks...  So with no diapers or snacks prepared, I had to bring charlie with me to Gus's school.  She hates crowds (like her mama) and cried her face off until I was forced to leave the picnic to put her in a swing for a hour to calm her.  Gus cried shouting "no fair mommy, you promised you'd come"  guilt followed.  Finally Ron and Raph showed up and I swapped Charlie for Raph and we joined the picnic.  It felt strange.  It's strange being in this situation - vanished from my routine than returned with my son whom everyone is hugging and has wires and bandages covering his chest..  I'm not sure if I created weirdness or if it existed but I felt awkward and self conscious and latched onto my kids in a way that probably made me appear even more awkward.

That all aside, the end is nearing and though I'm terrified of what our next mri shows, I'm trying my best to live day by day and enjoy all I've got which is tremendous.

Lastly because of my lack of organization skills, I can't thank all of my friends enough.  We have literally come home to home cooked meals daily and though we are in a haze and stretched to thin to thank everyone properly, we are grateful.  If it weren't for you guys my kids would have eaten boxed mac n cheese for 30 days (if they were lucky).  It's true.  I've only made it grocery shopping 1 time since radiation started.

I will continue to update as I can and am totally open to questions.  Don't feel weird asking.  I'd want to know and our goal thru this blog and making this public is to spread awareness to this disease.  It effects 1 in 4,000 births (Raphael's type only 1 in 40,000) but still it is very prevalent and no one has heard of it including myself 2 years ago.  I'm on a mission to change that with your help.

Lastly,  please consider making a donation to the children's tumor foundation to speed up research so raphael and the thousands of other kids afflicted with brain and nerve tumors can get into clinical trials which are our only hope at the moment.  No amount to small and every penny appreciated tremendously though my thank you note might take a year, it will come.  Here is the link.  http://ctf.kintera.org/faf/home/default.asp?ievent=1140830

xx
Lara

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.

http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1128644&supid=411039010

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

xx
Lara

Awesome Raphael

A year and a half ago our busy (happy) lives changed forever.  Our healthy "seemingly perfect" 4 your old son (first born of 3) went to a routine eye doctor appointment and just like that we began our medical journey (or more accurately medical nightmare) with neurofibramatosis type 2 - nf-2 for short (a mouth full right).

So you can google nf2 (I spent almost 9 months on the internet night and day- LITTERALLY) I missed so much doing that and what I learned was NOTHING of relevance to Raphael.  I watched and cheered my 6 month old daughters first time sitting up but in reality I wasn't there and I will always regret that.  Good thing I'm a photographer so I have the memories I mentally missed in those moments but even that sometimes that makes my guilt worse.

Every nf case is different.  There is no way to predict the future and every thing that comes up will have a different route of options.  I have learned the names of so many doctors.  Neurologists, neuro ophthalmologists,  oncologists, ENT's, speech specialists, swallow therapists, pulmonary specialists... the list is literally endless.  And when I say list I mean specific names of doctors and hospitals of practice in multiple states and countries.  NF has become my life, my obsession my indescribable guttural pain that I wake and sleep with.

NF is weird and scary and wildly misunderstood.  NF is a medical mystery.  There is no cure for NF.  There is no right answer for how to move forward with treatment options because there is no data.  There is no doctor that has the answers.  Every decision we make could be the wrong choice.  NF makes every ounce of my being flooded with guilt that this is my sons reality.  There are very few NF specialists in the world and they all have conflicting opinions.  NF is my nightmare.  Making it more of a nightmare is only the fact that I wish I had it instead of my baby.

My good friend who I met thru the small nf community has a gorgeous brilliant college aged daughter with nf-2 and I read something she wrote once that brought me to my tears.  She said that she was partaking in a clinical trial in an effort save her 1 and last hearing ear from her  bilateral vestibular schwanoma (another term I've become to familiar with , I can name tons of tumors) which was growing with no known reason or way to stop.  She was handed 2 pills by a nurse fully garbed in a suit, mask and 2 sets of gloves who handed  her the (?) pills .  I think of this often when I feel fat or I hate my shirt or have jealousy over my friends apartments and vacations.  This grounds me and she and her mother are my heroes.  I can not imagine the fright that this entailed for their whole family and am also grateful for their trust in their doctors and willingness to help nf get a little closer to a cure.  Will Raphael be be the next guinea pig?  Sadly, that is our hope.  That makes me want to cry too though if you know me it doesn't take much for the flood gates to open.

In the last year and a half we have put Raphael under anestesia over 20 times tracking multiple lesions on his brain.  He is completely blind in his left eye (blackness) due to a tumor that has rotted his optic nerve.  That tumor is growing in multiple directions (back towards his brain, to the right towards his seeing eye and forward towards his blind eye threatening to literally push it out of his face (gross but reality).  If we do nothing we should go to jail.  Every scenario is horrific.  We have to stop the tumor and soon.   He also has tumors corroding both of his hearing nerves but those are small and we are told not to act on them yet - hoping science catches up to the growth. 95% of nf2 patients to date end up stone cold deaf.  Can you even imagine reading this data on google pertaining to your perfect, sweet, charming athletic little boy?  Sorry for the pity party.  In all honesty he's also a pain in the ass like all children but having 3, the tantrums and general 6 year old behavior just make me joyful that he is living his life with no boundaries.

We were given 2 options.  Brain surgery - craniotomy to be specific (use your imagination) or a new type of radiation called proton therapy.  NF specialists worldwide have maintained that radiating nf tumors might lead to malignancies later in life (in the brain).  Proton therapy is site specific - the beams start and stop at the site of the tumor.  Data out of the states has not shown the above (future malignancies) to be the case. Brain surgery comes with the risk of among multitudes of issues, losing a eye, personality changes and worse, not being able to get the whole tumor plus possible infection and the need for multiple brain surgeries and eventually radiating anyway.  I cried and sobbed when our loved and trusted neurologist agreed that there was no right answer.  Eventually we decided to go the radiation route after speaking with a highly respected nf neurosurgeon.  1 thing I've learned thru this journey is surgeons love performing surgery.  Well when our dream neuro surgeon wasn't convinced surgery would be successful, our minds were made up.

So we are about to embark on Proton therapy.  Our oncologist who we found serendipitously (a story for a later blog) has worked with nf patients for upwards of 20 years and has never had a problem with future malignancies with his nf patients.  What proton therapy entails is withdrawing Raphael from kindergarten, driving him 2 hours every morning at the crack, putting him to sleep and then zapping beams thru his eye to his skull and driving 2 hours back home to pick up his brother and sister and try to continue a normal routine (whatever that means) 5 days a week for 6 weeks.  He will go to sleep in a special room in my arms every day and wake up the same way.  He will never see the scary machine which literally made my arms and legs weak.  He will be treated with kindness and get used the the routine.  He will have a graduation ceremony with medals and bells.  I am at peace with my decision.

Now, what I really want to share is that we are no different than anyone else.  My daily challenges remain the same though sometimes derailed by doctors.  I have 3 children all delightful and challenging in their own right.  Charlie (a girl) just turned 2, Gus is 4 and Raphael a week past 6.  Our lives are fun, hectic and hard in the same ways most families are.  Tonight, getting used to special treatment, when I wouldn't buy Raphael another pokemon  card set he told me he didn't love me and would rather be in a orphanage like Annie.  At the same time Charlie was clinging to me begging for m'ms (she learned about them last week) and Gus was crying because he sensed I was sad and was upset that raphael's birthday was last week and his "not forever or ever or ever" (it's in november).  Thru their sobs, I realized life is stressful no matter what and at the very least how lucky am I to have a husband I am deeply in love with and kids I think about every second of my life.  It could be worse.  We go to so many hospitals and see children that I look at and know in my gut they are not going home.  It brings me huge perspective.  I get to take Raphael home every day and he is happy and crazy as all the kids in his class.

Our journey is gonna suck but we will live to the fullest and love one another and feel grateful for our family.

End note, Raphael eventually crawled on my lap and told me he was lying and I'm the only mommy he ever wants.  He then asked for a tight squeeze.  I must say, I feel pretty lucky.

I will continue to update here for those interested and am scared as well as grateful for the platform.

If you wish to make a donation on Raphael's behalf here is a link to do so.  new link to follow http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1128644&supid=411039010

xxx Lara