December 2016

What can I say – I knew I was going to be terrible at this!  I’m going to go back up a bit and update on how things have been.

Our return from California went well – the kids were a little bit sad but life for them returned to normal very quickly.  Same for me too – I went back to work and things were good for a few months.  The new diet was going well, I lost almost 40 pounds and was feeling quite comfortable with what I could eat.  I was able to go out in public and make the choices that worked best for me! Life goes on, as it normally does, until the pain returned in my back in late may.  We did another PET scan which showed some progression of the cancer in my spine and decided to start chemo again.  Unfortunately my white count dropped pretty quickly and I got a sinus infection.  Not a good combination, as I ended up in the hospital with no white cells and a fever.  No fun!

Fast forward to the summer – chemo continued – PET scan kept showing progression (obviously something is not working!)  – Vacation with the family was wonderful – great memories were made!

I went back to school (work) for a little while but with my white count still so low and the threat of germs increasing I decided (along with my doctor) that it would be best to stop going for a while.  A very sad decision for me but with the threat of ending up in the hospital again it was an easy one to make.

October – PET scan showed small spots in my lungs (I would insert a sad face if I knew how)  we could start new chemo but we are sort of running out of options.  My Doctor has reached out to Sloan Memorial in NYC.  I met a fantastic Doctor there that found a perfect trial for me.  The only problem was that it is run out of Dana Farber in Boston.  We are becoming quite the travelers!  After many, many phone calls and multiple visits to Boston I was finally told that I was accepted into the trial.  It was an incredible challenge to my patience as they were so laid back but I finally had the trial medication in hand and heard the words out loud “you’re accepted”!!! Wow, what a relief!  Now – the medication is in pill form so I am able to take it at home but we still have to visit the Dr in Boston once a week for seven more weeks and then repeat all the testing and see how we are doing!

For now we are going to enjoy the time we have together – celebrate the magic of the season and make some great memories!!


Good Morning! Wow what a week we have had.  It all started with the changing of the guard on Monday.  Craig went home and my mom and sister flew in to join us.  They arrived with a million hugs in tow and distributed them all properly(: and we took them all gratefully – we miss everyone back home!

At the clinic they switched my IV treatment to high dose vitamin C, hydrochloric acid and hydrogen peroxide.  It’s an interesting mix but I am having no issues.  I feel amazing – we have been walking miles and miles everyday.  Enjoying the small moments this week.  I was able to see my children as the amazing people they are!  They found a young mans wallet on the beach and worked really hard to find the owner – they wouldn’t put it down until it was in the correct hands – thank goodness for google white pages!  They helped a molting elephant seal – chasing the birds away for hours!  They saved a stranded sea star that was stuck on the boat launch after high tide.  They worry about the homeless population here. They notice every little thing that we have that they do not and feel sad for them. Julia would like to use all her money to build housing for them! At night when they go to bed they have begun to appreciate the little things in life – the sound of the waves, the slight breeze blowing through the window, the sun when it rises and blinds us all every morning along with all the comforts of the place we have been calling home these past few weeks.  I am so incredibly thankful that they were able to join me on this journey.  They are wonderful children and I hope with all my heart that I will get to see them turn into wonderful adults!

Today is my last day at the clinic – I will get to see the doctor who will discuss some results and fill me in what I should be doing over the next six months – I will do anything!

I will let you know how it goes – hopefully tonight!


Hello – I’m sorry it’s been a while but we have been so busy!

I will take you back to the weekend – On Saturday we ventured out to LA. It was definitely an interesting trip.  We headed out early in order to avoid traffic and took a roundabout route to see the countryside before hitting the city.  Our first stop was a car dealership.  Yes, you read that right, a car dealership!  They have fancier cars here than we do.  We didn’t get to go inside and see the really fancy cars like the McLaren, but we did get to see the Mazerati up close.  That stop was a highlight for Carter!  We journeyed to Hollywood and wandered the streets taking in the sights – we saw many of the stars, the Chinese Theater and a few of the lots where they film some of the shows we watch. We ended the day at Venice Beach. Wow! Let’s just say I wanted to cover the kids eyes and ears the entire time!

On Sunday we headed to the Santa Barbara Zoo.  We have spent many days at the Bronx Zoo but never have we been so close to the animals!  We were up close to the Elephants and were able to feed the Giraffe.  What a laugh!

Monday – we are back to our new normal routine – I head to the clinic and receive an IV of Bicarb which will make my body more alkaline.  Turns out the cancer cells like an acidic environment! More oxygen, electromagnetic therapy and acupuncture.  Also, it’s shot day – boy do they hurt!  It’s a little weird to see some of the new patients come in.  Even though we have only been here for a week (we – meaning the patients who started at the same time as me) we all have our seats and have created our own little routine, it feels like newer patients are intruding.  I guess if you spend enough time in a room the space begins to feel like yours!  In the evening we walk to the wharf.  It’s a good 4 mile walk but the kids say it was definitely worth it – they were able to get some fudge.

Wednesday – I skip Tuesday because it was simple and pretty much the same.  Today I have the day off so we head to a small Dutch town named Solvang.  It’s a very cute, small German town with amazing pastries.  Of course I didn’t have any but watching the kids faces when they were eating was enough to tell me how good they were.  My new diet is becoming easier.  Thankfully I have Craig here with me – he has been a saving grace!  He is willing to travel from store to store in order to get food to feed the kids and the special food for me!  He has cooked some amazing dishes that my old me would have never tried but the new me finds delicious!  I am very thankful.

Thursday – oh-no shot day again!  I think it is actually getting easier but it still smarts a little!  I have acupuncture again today.  It peaks my interest because he is able to find points on my skull that correspond with the spots of pain on my spine.  The needles are actually taking the pain away – WOW!  It lasts while the needles are in and for about an hour afterward.  I ask if he can leave them in all day, he giggles and then takes them out – so I guess not!  We spend the afternoon at the beach – the weather is beautiful but the water is freezing.  This kids don’t seem to mind but their lips are purple!  Craig cooked up Spaghetti Squash – before today I would have said “No thanks” but I try it, thankful for food and it is amazing!

I want to thank everyone for checking in to see how we are doing.  We may be far from home but we can still feel the love!  Thank you so much for allowing us this opportunity!  We feel so blessed!



Hello again!

We made it – Halfway done!!!  Now that the family is with me time is flying!

Thursday flew by just like a normal day (kind of weird that this is my new normal).  After the clinic we decided to take a drive up Painted Cave road – we missed the cave itself but had a great adventure looking for Knapp Castle and climbing to the top of the Mountain.  Mountains are very different here due to the different vegetation.  Here when you climb you are wide out in the open!  It was amazing! The girls and I had a great discussion on how life is just like the trail we were on.  How it has it’s ups and downs and how sometimes it is really hard but having those you love beside you makes it all worth it!  What great talks we have! Once back at the jeep, we decided to travel up the s-curve, narrow, cliff hanging road across several mountains only to find out 7 very windy miles later that it was a dead end! But, what beautiful views!

Friday – Today was definitely interesting – Along with the normal infusion of vitamins, increased oxygen and electromagnetic therapy to get my cells communicating correctly, I received what they are calling an auto-hemo.  What they do is draw a small amount of my blood and mix it with sterile water and inject it into my largest muscle (for those of you wondering it was directly into my tuchus!)  The theory is that my it will cause a little bit of damage to the muscle and my white cells will come and attack.  The white cells will ignore my blood and what normally should be there and learn to attack all the unwanted cells!  Again, sounds good to me but just a bit painful!  I was able to finish early so we headed out on an early afternoon adventure!  We went out to Carp Beach to see the tide pools.  We made it just in time for the minus tide and climbed out on the rocks to see what the high tide left behind.  It was fun to look through the little pools but we could have used a warning about how slippery it was!  Lets just say I don’t fall gracefully!  The kids had a great laugh though!

So we are on to the weekend – we plan on seeing LA and Hollywood and maybe even the Zoo!

Hi its Julia*


Oh my, I can not believe that March is half over already!  I just finished my third day at the clinic and what can I say -it took three days for them to see the real me and for me to misbehave!  I’m sorry to say, but I have tried really hard to be open-minded.

Monday – we had  no idea what we were in for or even what time we had to be there but we all gathered in the jeep and headed out early to the clinic. They said that we arrived just in time and handed over about 50 papers to fill out.  It took about 30 minutes and then we were able to meet with Dr. Issels.  We listened with amazement at his theories and the testing that was going to be done.  All of his testing was non-invasive and naturopath based – very easy. Once finished the family headed out to explore and I headed into the IV room.  Time for more bloodwork and vitamin infusions.  Thankfully I have a port, which makes the bloodwork easy because they drew 27 vials worth of blood!  Once that was finished I had some lunch and then headed to the dry sauna.  It was 130 degrees – hot!!  Theory goes that an increase in blood temperature will help kill the cancer cells – works for me.  Once that was complete, I was picked up and our real adventure began – we drove the streets and explored the surrounding hills and canyons!

Tuesday – at the clinic I did vitamins again then some oxygen therapy including a hyperbaric chamber along with some acupuncture.  Things are going well – I am feeling good and ready for our afternoon adventure.  Today we head to the Gaviota hot springs.  The trail was quite a bit longer then we thought but along the way we saw the most amazing trees!  The kids had a blast climbing up, over and around them.  We finally found the hot springs and were looking forward to dipping our toes in them until we realized that Hot springs during a drought are no more then little smelly puddles with bubbles in them!

Wednesday – Today started off fine – I head to the clinic for another round of vitamins, a talk with another one of the doctors and some electromagnetic therapy.  All seemed great until I remembered that I was to head down the street to another office for a colonic treatment.  I have to say that I have been very open and accepting, and am trying very hard to do the right thing but……  my blood pressure went through the roof my pulse was up to 120 – I walk up to the door not sure yet how this is going to be but in I go and that’s it total panic attack!  I look at the woman and just blurt out “I can’t do this – I’m sorry!” and I run out the door!  So I know that this is totally the wrong way to act and medically I can see the benefits but I just couldn’t do it!  Tomorrow I am sure that there will be lectures and I will deal with any consequences that may come from missing the appointment but my blood pressure is down and my pulse has returned to normal.

As for this afternoons adventure – we waited until evening and walked across the rockiest part of the beach up and around the cliffs just to see a glimpse of the most beautiful sunset!  Let’s just say we took Craig a little out of his comfort zone!  We were running across the sand just to hop on the highest rock to avoid the crashing high tide!  What fun – we were all soaking wet and covered in sand but we were laughing and cheering each other on the whole way – what a blast!

hi I am Lindsay I love you all


Wow! Santa Barbara is Beautiful!  Having never been to California, I didn’t really know what to expect but this is picture perfect! We sit in the apartment – all of us together (Finally) and look out the deck door to a beautiful view of both the mountains and the pacific ocean!

So to step backwards a little – to the Dendritic vaccine – the Doctor and the Lab person did a wonderful job of making the shot pain free.  They did warn me that afterwards I may get a rash and be sore and sure enough I did and I was!  My leg still remains slightly swollen with a rash but otherwise it is ok.  As I look back on the week in Mexico I see how incredibly hard it was!  Not only was I away from my family but all that I relied on for comfort was taken away!  None of my normal comfort food, no caffeine, no sugar, no chocolate, nothing! By Wednesday I was feeling quite nasty, just ask Craig – he received , via text and Skype the brunt of most of my frustration.  Thankfully he accepted my apology and we have moved on! I believe Nana really joined me on the hardest part  of this journey!  I could never thank her enough!

When we left the Hospital on saturday I was almost giddy with excitement knowing I was going to see my family but so nervous.   I don’t know how I am going to follow this diet in the real world.  We traveled with a driver across the border and it almost felt like we were fugitives running away as fast as we could, but what a wonderful feeling to be back in the United States.  We meet up with another driver for the trip to Santa Barbara.  It was a very long, quiet drive but we arrived about 10 minutes before the family.  The apartment is quaint with beautiful views and is filled with the sound of the ocean waves crashing on the shore.

Tomorrow we head to the clinic and see what we have in store for the next few weeks!  I will let you know – wish us luck!


Hola, from Mexico!

Today is our 5th day here and this is my 5th time trying to post an update!  The Internet has been everything but reliable.  I can’t really complain though because at least I am able to touch base with family and skype my girls! Without that I would be totally lost!

Before we begin about the treatments here I would like to back up a couple of weeks.  My journey here began with two simple words “your accepted”. With those words came the joy of being offered another option, but also extreme fear of the unknown!  Unable to do this on our own we reached out to family and friends and received the overwhelming response of a great small town community!

It began with a dream and a go fund me page that tallied numbers quicker than I ever believed imaginable.  That was followed by my own middle school, a place that has become my greatest distraction and happy place over the past few years, rush to my side in a show of support and generousity! They played their first annual Bulldog Battle Basketball game in new t-shirts boasting “Refuse to Lose”  on the back!  I have never enjoyed a basketball game so much! It was amazing to watch “Refuse to Lose” run up and down the court!

That was followed by the most fantastic and amazing spaghetti dinner that was put together by the most amazing group of friends!  The day was spent mingling with everyone from old neighbors to new friends! I only wish there was more time to talk with and thank everyone who was there.  I am still in awe at how that was pulled off.  It was definitely a highlight!

3/6/16  We head to California – Nana and I sit in the middle seat both set between two strangers.  Leaving my family was incredibly hard and knowing that I would see them in a few days did not make things any easier.

3/7/16 We land in San Diego for the evening then head out to Tijuana in the morning. The cross over the border was incredibly easy. The first thing I notice is that they have very few traffic lights and a lot of traffic circles with stop signs that everyone ignores!  The roads are only half paved and the sidewalks are heaved due to tree routes with holes all over the place.  They are in the middle of the “storm of the century”!  Roads are flooded & not New York flooded but truly flooded.  It does not slow anybody down – the drive was definitely interesting!  Once at the hospital – we check in, fairly simple, and head up to our room.  The room is nice, clean.  The hospital floor is incredibly quiet – I worked in a hospital and never, ever was it this quiet!

3/8/16 WOW – we are bored!  I am not a sit still kind of person but this is silly – we honestly have NOTHING to do.  We go between reading, coloring, playing games and wandering the hallway.  They draw some blood (more than usual) and I receive an IV of multivitamins and am set free.  We are able to wander outside the hospital.  Not much to see, nothing to do but we wander, happy just to be outside and doing something!

3/9/16 Nothing planned for today – we wander around the city again just to keep ourselves occupied!

3/10/16 Today is the day I receive my newly trained lymphocytes and natural killer cells back.  It is a short infusion given by the lab tech, only about 20 minutes. Another IV of multivitamins and again we are set to wander the streets in order to reach our 10,000 steps.  The doctor says that I may feel a little tired but I feel no different!  I fall asleep later visualizing those little natural killer cells eating every cancer cell in my body.

3/11/16 Today is the day I get my dendritic vaccine.  The doctor says that it is quite painful so they are going to numb the skin and then give a dose of lidocaine before the shot! Oh boy! I will let you know how that goes!

Thank you for being patient!  I will touch base again soon!


Hello everyone!  This is my attempt at keeping in touch with everyone and keeping everyone up to date on our crazy journey through life!  Everyday I feel overwhelmed, but the past couple of days it has been an incredibly great overwhelming feeling.  Before there were concerns over health, family, money, and the possibility of having to ask for help but now there are feelings of hope, love, friendship and community.  Thank you from the bottom of our hearts for allowing us to travel on this journey for a cure.  We will forever be grateful for the time we have together!

Wondering off in the great unknown, but how exciting!  We start this journey without knowing where it is going to end.  We have high hopes but some fears to.

Here we go …….