Hope is a Journey….

Posts tagged ‘Primary Immunodeficiency Disease’

Whatever it takes

Christmas Break should have been a fun and carefree time for our family, instead – it was full of fevers, coughing, breathing treatments, antibiotics, seizures, and sleepless nights.

infusion nebs

Just before Christmas, Ralph started coming down with a head cold – which progressed into a chest cold.  Christmas Day, Sasha started with sneezing nonstop, and it progressed to coughing and fever.


We immediately started breathing treatments and hoped that it would be short lived.


Will became sick a few days after (and so did I), but thankfully, for both Will and I – it wasn’t as severe as Ralph and Sasha’s infection. Sadly, for Sasha, it persisted through the new year, despite beginning a 21 day heavy duty course of Augmentin.

sleeping soundly

By the time we hit January 2nd, Sasha was still a train wreck spiking random fevers and definitely not playing by any rules.  Sasha was really struggling with fatigue and weakness.

sleeping in office

Every system seemed to be impacted….we saw more seizures, higher heart rates, lower blood pressures…and she just was wiped.


We had been in contact with the immunologist throughout all of it via email, but it was time to give him a call.  It soon became clear that we were at a crossroads.  Both kids were having a rough go at it, but Sasha was having a particularly difficult time handling it.


Even when she was smiling, it was perfectly clear that her body was not handling the stress of the illness well.


If this was how they responded to a cold, imagine how they might respond to what is being donned, ‘The Worst Flu in 10 Years.”


NOPEI don’t even want to go there.


The decision was made to pull both kids from school indefinitely given how severe the flu season was shaping up to be along with the fact that there were quite a few other nasty bugs going around. The immunologist also decided to increase Sasha’s weekly infusion dose to see if that helped also.


The next step in the process was for him to write a letter to the school stating they would be on ‘Homebound’ status until further notice and I needed to call the school and let them know.  I spoke to the Principal, and he was a bit surprised by the development, but was already thinking out loud about what we could do and how fast they hoped to get things rolling.  In the meantime, we’d continue weekly tutoring (1 hour a week) until they could hire a teacher for both kids.  As much as we all wanted it to happen overnight for them, these things take time – and we understood that.

day 10

In some ways, it was a good thing because Sasha still wasn’t feeling up to par and, honestly, both kids had a lot of appointments they needed to go to – so they were going to miss a good deal of school anyway.


Within a week, we had a plan, increased tutoring hours to 2 hours a week per kid, and had a successful mediation (regarding Sasha) with a definitive plan to keep her on a better track once she does go back to school.  As of this post,yesterday was the first day with the new teacher here at the house.  We really enjoyed our tutor that we had, but due to time constraints and the effort to keep things as ‘near school-like‘ as possible – a new teacher needed to be hired.  I think she will work out well with the kids!  She will be here 20 hours a week (10 per kiddo/2 hours each kid per day).


You never realize just how much you don’t appreciate simple freedoms you have until you are faced with a situation like this.


To take a risk and ‘LIVE‘ your life without consideration for fallout if the worst case scenario occurs.


To play it safe, follow doctor’s recommendations, and know that the ‘inconvenience‘ might be what saves you from hospitalizations, set backs, or worse…..


To some, this sounds like ‘no big deal‘ – but it’s so much more than just pulling them from school….


It’s losing social interaction…




It’s a complete change in schedule…


It’s finding a quiet place for 4 hours a day that both kids can work (we live in a house with 8 people total – 6 of which are home all day almost every day)…


It’s a harsh brush with reality for Will and Sasha – who are now old enough to understand that things are different for them than for their peers…


It’s about the entire mentality of our everyone in our home having to change.  You see, it’s not just Will and Sasha who are struggling with sickness in our home, and everything that one person does can have an impact on every other person in the house.  We have to keep everyone as well as possible.


It’s about NOT going out into the community unless there is a need (like going to a meeting, work, appointments, food shopping/pharmacy trips).  Doesn’t sound like a big deal until you really think about it.

its kind of a big deal

We always keep our exposure to a minimum during this time of year, but this year, it’s incredibly important for us to do so.  We are currently in the process of moving Will and Sasha’s Physical and Occupational therapy to the home setting to also limit exposure.


It’s about taking extra precautions when they DO have to go out in the community.


It’s limiting who comes INTO our home.  The reality is that you often are sick and contagious before you even know you are.  As much as we want to have social interactions with others – right now, it’s best to limit the amount of people we are exposed to.  The few we DO allow into the home are often those who are just as confined as we are and 99.99% of the time they are adults, so the chance of exposure is much smaller.  Honestly, not allowing kids into our house until further notice is a TOUGH limit to set, but it’s one we feel is an important limit to set.


It’s about getting creative with our situation and coming up with ideas to make things seem less drastic….like doing ‘Skype Play Dates’ and ‘Face time’ with school mates.


If we’re going to do it, we’re going to do it right, even if it’s not easy…and boring…and a hassle…even if it puts a damper on our ‘social life‘ – it’s worth it.


To us, keeping Will and Sasha as healthy as possible (and the health of everyone else living in our home – most of which are immune compromised) is the only thing that matters.


Some may think it’s ‘excessive‘ – but, our physicians are all on the same page and we are on that page with them.  Right now, this is what is best for the children.   To put it bluntly, the only opinions that matter when it comes to the health of our children are those of the doctors who are treating our children and our own.


With that being said, we understand and accept the fact that we will not be able to eliminate ALL exposure.  Some aspects of life DO have to go on.  My mom, Ralph and my niece all have to work.  I have meetings that I am required to attend as an elected and appointed representative in town.  We all have appointments with physicians in Boston that are NOT optional.  Sasha and Will’s teacher needs to come every day so they can learn.  Physical and Occupational Therapy need to continue.  We have to go to the food store and the pharmacy for necessities.  Life. Goes. On.


Yep, you heard me:  Life. Goes. On…..and so do we – one day at a time, one hour at a time, one second a time.  Ralph and I realize that we have the power to make this ‘Lockdown’ a positive OR a negative time in the lives of Will and Sasha (and everyone else who lives here).  We are choosing to look at all the good that can come from this…..so here’s a few just things we are focusing on to get the ball rolling in the right direction…


We have more opportunities to make beautiful memories.


We have more time to play games.


We have less time apart.


We have new things to learn about each other.

We have old favorite past-times that we get to revisit.


We have the push we needed to get the basement addition started (and finished) so Will and Sasha can have a quiet place to learn and a room that is ‘just for them.’


We have to slow down.


We have limitations….yes….BUT also new possibilities.

Sky limit

And, most importantly – we can revel in the fact that, no matter how much ‘freedom‘ gets taken away from us because of our disease processes….as long as we have each other, NOTHING else matters.

Nothing else matters

At the end of the day, when Ralph and I kiss the kids goodnight…



We can put our heads on our pillows and know that, no matter what happens….we have done and will continue to do everything in our power to keep them healthy, safe, and aware of how deeply loved they are – and we can take comfort in the knowledge that they know that we will do whatever it takes because of our love for them.

whatever it takes

Love and Light,


Keep your eyes on the prize!

It was a frigid night in December.  The walls inside my house echoed with the pitter patter of little feet as we all anxiously awaited the arrival of Senator Kerry’s Chief of Staff, Drew O’Brien.  In true, “Murphy’s Law” fashion, Mother Nature had served up an ice storm to keep things interesting.  To our surprise, Drew was adamant on not rescheduling – he stated,
Your needs don’t stop for an ice storm, so why should I?”

It was only 3 days prior (Friday, December 10th, 2007) that I nervously typed out an email explaining that we needed Senator Kerry’s help.  I told him that patients with Primary Immunodeficiency Disease who had Medicare as their insurance were being denied the proper access and coverage to their life saving treatments (gammaglobulin infusions – IVIG) and it was significantly impacting, lessening, or taking their lives.  I was SO afraid to hit ‘Send‘ – I mean, what if I didn’t word it right?  What if I wasn’t clear enough about the need?  What if I messed this up?  The Immune Deficiency Foundation (IDF) knew that Senator Kerry would be a huge asset to helping rectify the issue and had reached out to me to make contact and ask for his help….I didn’t know the FIRST thing about how things like this worked…why would they trust ME to do something like this???  But they did…and, I took a leap of faith and went with it.  I knew that I wasn’t the only one leaving my comfort zone and asking for help, so I jumped in – both feet first!

Within a few hours, I got a response back from Drew – and he put us on the calendar for the next business day (Monday) to come to my house and hear our story.  I excitedly and nervously called my 2 other friends, Michelle and Eleanor and we scheduled an ‘infusion party‘ for that Monday.  They too were nervous about what to say/not say – but I told them the same thing that the IDF told me – just be yourself, be honest and trust that they have your best interest at heart….and that’s just what we all did.

When Drew arrived, I introduced him to everyone (6 kids and 6 adults).  He got to watch us all set up and begin our infusions, and he had some of Michelle’s delicious cake with coffee while he listened to our stories and the struggles of others.  He was kind, compassionate, and just an overall wonderful man.  After several hours, it was time for him to leave, and he assured me that he would speak with the Senator and that he felt confident that this was something that the Senator would be willing to learn more about and possibly take on.








A little laugh for us all....

A little laugh for us all….


Our 6 Munchkins Infusing

After he left, we all were elated and empowered – it felt good to DO something!

We kept in contact over the new few months, and finally – on March 16th, 2008 – Senator Kerry attended one of our blood drives and made an official public announcement that he would be an Original Sponsor of the Medicare IVIG legislation!

Our family with Senator Kerry

Our family with Senator Kerry

The plaque we gave Senator Kerry(Donated by Etches in Stone)

The plaque we gave Senator Kerry
(Donated by Etches in Stone)

Will's preschool teacher coming out to show her support

Will’s preschool teacher coming out to show her support

My first opportunity to share with Senator Kerry my heartfelt gratitude.

My first opportunity to share with Senator Kerry my heartfelt gratitude.

Senator Kerry giving Will a squeeze

Senator Kerry giving Will a squeeze (with Drew in the background on the right)

Presenting Senator Kerry with a plaque recognizing him for his support to the Immune Deficiency Community.

Presenting Senator Kerry with a plaque recognizing him for his support to the Primary Immunodeficiency Community.

This began a wonderful relationship between Senator Kerry’s (his office and his staff also), the PIDD community and the Immune Deficiency Foundation.

I’ll never forget how, initially, our efforts were met with a bit of cynicism from our patient community – some didn’t feel the need to get involved because they didn’t have Medicare and it didn’t matter to them.   I told them that it didn’t directly impact us either, but the reality is that it impacts someone….and that’s enough for me. I tried to explain to them that Medicare sets the standard and other insurance companies follow suit eventually – some understood, others couldn’t be bothered…..I decided that I just needed to focus on the fact that it mattered to those of us who led the charge and we were on a mission!

Because of our ignorance as to how the legislative process works (and often how slow it is) – many of us did not realize just how long of a process this would be – but, one thing was certain – we had a great group of folks locally AND nationally to walk with on this journey.

April 17th, 2008 was my first trip to D.C. – Michelle and I traveled together and Eleanor joined us the next day.  It was great to get to meet so many wonderful people, hear their stories, and feel that instant connection with others.  The staff at the Immune Deficiency Foundation (IDF) was incredible also.  Little did we know, this was only the beginning…..


Marcia Boyle, President and Founder of the Immune Deficiency Foundation with the plaque recognizing Sen. Kerry as our Champion.













We continued to work with legislators over the next several years – going to Capitol Hill yearly and also meeting with our legislators in our home states.  Every year we went and asked for support – and, little by little, every year- our support grew.

March 30th, 2009 Capitol Hill Trip


Our Awesome MA group with Kathy Antilla and Marcia Boyle








April 30th, 2010 Capitol Hill Trip






She's been with me all the way!  :)

She’s been with me all the way! 🙂





May 29th, 2011 Capitol Hill Trip


Our Awesome MA group!





Ralph's first year with me!!!!

Ralph’s first year with me!!!!


Yep, our Awesome MA Group, again!












And finally….
March 21st, 2012 Capitol Hill Trip


Our Awesome MA/ME group!













It had been a long haul….several years walking the Hill – and many were weary, fearing the legislation would never come to pass….but HOPE carried us….

On Wednesday, December 19th, 2012 – HR1845 passed in the House of Representatives by a vote of 401 to 3!

On Friday, December 21st, 2012 – the companion legislation went to the Senate for a vote and passed UNANIMOUSLY and is waiting for the President to sign it into law!

To say we were excited is an understatementThis is incredible news!  I can’t even begin to tell you just how awesome it feels to be a part of something that’s bigger than me….to know that our efforts had an impact goes beyond what I can put in this blog.  I don’t know if some of you realize just how hard it is to get existing law amended…but it’s extremely difficult, especially when you are a small disease population that is not well known (like Cancer, AIDS, Alzheimers, and so on).

Our heartfelt thanks go out to Senator Kerry and his incredible staff (Drew O’Brien, Megan Thompson, Ashley O’Neill and SO many others), especially for being our Champion on the Senate side of this legislation along with Sen. Alexander – for never giving up, never backing down, and never losing hope!

Of course, we had some incredible champions on the House side – Representatives Brady and Matsui worked tirelessly to gain support and raise awareness about our need. 

We’d like to thank our local legislators who stood alongside Sen. Kerry in this legislation:  Senator Scott Brown, Congresswoman Niki Tsongas, Congressman Keating, Congressman McGovern, Congressman Neal.  Their support was critical to the success of this endeavor and there are NO words to express the depth of our gratitude.


Stepping out of my comfort zone and doing something that intimidated me: Worth It
Countless hours making phone calls, sending emails, and raising awareness for the need to have legislation supported and passed: Worth It
Several trips to Capitol Hill: Worth It
Waking up this morning and realizing that all the years of hard work with countless others dedicated to the same thing you were —-
it all came down to 2 votes: the House and Senate – and it passed with almost unanimous support: Worth It
Knowing you made a difference in the lives of those who need it most: Priceless.

Thank you to EVERYONE who was with us on this journey – all of my fellow friends with Primary Immunodeficiency Disease – YOU ARE WARRIORS and I’ll fight alongside you any day!  Thank you to all my friends who didn’t have the disease but helped anyway…and most importantly, a HUGE Thank You to my family – for knowing how important this was to me and supporting it…helping with phone calls, awareness events, taking care of our kids when we needed to go to meetings with legislators or to Capitol Hill. I love you all! This couldn’t have been done without the help of each and every one of you!

I am SO PROUD of what we were able to accomplish together!

THANK YOU to Marcia Boyle, Lawrence A. LaMotte, Emily Hovermale, Colin Seal, Kathy Antilla, and ALL of the other folks at the Immune Deficiency Foundation who worked tirelessly to make this need become a reality! These people are tireless and pour their hearts into the patients, their needs, and their work.  We are so blessed and fortunate to have these people in our corner fighting with and for us.

SO…the moral of the story is this:  Don’t EVER think that you can’t do something because you’ve never tried it or don’t know how to do it….where there’s a will, there’s a way. AND, don’t EVER underestimate the power that ONE person has…….while I certainly was NOT the reason this legislation went through, I was a part of it….and that mattered!

one person

The next few days I will be posting (hopefully) several blogs – there’s SO MUCH going on – I don’t want any of this good news to get lost in the shuffle!!!!

I hope you all had a Merry Christmas…..keep your eyes peeled for the next exciting tidbit of news….coming soon!


Love and Light,


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