The Blessings CF Brings (Yes, Blessings!)

Let me tell you a little secret about fundraising:  I HATE IT.  I hate taking on such a huge project in the middle of the school year when I'm already crazy busy.  I hate being afraid I'm going to miss some important detail and forget to send someone what s/he ordered--or worse, forget to say thank you to someone.  I *really* hate asking the people I love for money, which is even harder after the first year.  But more than anything, I hate that my son has a disease without a cure, a disease that the government doesn't consider important enough to fund research toward finding a cure, a disease that affects almost every part of the inside of his tiny little body.

Now let me tell you another little secret about fundraising:  I Love It.  Or rather, I love the incredible blessings that we have seen because of it.  So many people were instrumental in helping get Ben's Brigade off the ground last year, and since I'm posting this online without everyone's consent, I won't name them here, but the logo, the knife, the vinyl stickers, the hats, the student fundraisers, the donations, the walkers, the support...it's all noticed and appreciated more than we can say.

The feeling I get when I hear the email notification that means someone has joined our team, or made a donation, or asked how s/he could help--that feeling is indescribable.  There is a surge of love, gratitude, and HOPE--hope that together, maybe we really CAN help those who work so hard to find the cure.

And then there are the big surprises.

Unexpected Support
Last year, in preparation for their fundraising kickoff for the Ridgecrest walk, the AVID classes asked me to speak.  I was terrified.  I speak in front of roomfuls of teenagers all day every day, but this was different.  This was telling them about one of the hardest moments of my life.  This was sharing something that is deeply personal.  This was trying to find the balance between showing them the gravity of a CF diagnosis and my beautiful baby's regimen without exploiting him or his illness in the interest of money.  This was *trying not to cry in front of a roomful of teenagers*.  I wasn't sure how to do any of that.

But I did it.  On the day of my speech, I was shaking.  I had note cards and a PowerPoint presentation, but I stuttered and stumbled over my speech.  And...I cried.  And you know what?  It was ok.  It was more than ok.  It was wonderful.  After I had finished, and as the kids were leaving my room, two students whom I didn't know came up to me.  The girl had tears in her eyes.  She told me she was so touched by my story and said, "I want to help!"  And then she threw her arms around me and gave me a hug.

Selfless Acts
Shortly after that amazing moment, another incredible thing happened.  We were approached by an old friend who does incredible work with wood- and metalworking (swords, knives, jewelry, etc.).  He said he wanted to make a knife to auction off and donate the proceeds to our cause.  While this led to an eventful (and anonymous) bidding war that ended up being between our own fathers, it was also an incredible act of giving that we will never forget.

And this wasn't just any knife.  Our friend put so much thought and love into this project.  He chose purple heart wood because 1) purple is the color of CF awareness and 2) the Navy used to build ships out it, and he liked that connection.  He made the spacer out of antelope horn because of a personal connection that isn't mine to share.  The craftsmanship is beyond compare, and the knife is stunning in its beauty.

SEE?!  Gorgeous.

One other amazing thing came out of this knife auction:  We learned that several of our nearest and dearest, including the craftsman himself, had already been plotting to make sure that the knife ended up in our hands eventually, so that it could be passed on to Ben when he was old enough to understand.  I love the effects of fundraising.

The Kindness of Strangers
This year we are trying something different.  I can't go into detail yet, because it's a surprise, but I still have to tell this story.  I had been talking with someone I found on a neighborhood site.  He and his wife have a side business that they do from home, and we wanted to have them do some work for us so we had some fun new ways to get donations this year.

Last night he contacted me saying that he and his wife had been talking about our cause and wanted to do our project at their cost.  He added that they also wanted to throw in a free item for every five sold, meaning that they would take a loss for this project.  We have never met these people.  I didn't even tell them our story--just that we were fundraising -and they are doing something of this magnitude out of the kindness of their hearts.  I shed a lot of tears last night over this.  I was just so moved.

Just last week I was so frustrated with CF as we were coming off antibiotics *and* fighting RSV.  I was stressed after missing so much work to stay home with Ben because he had to do vest four times a day; I was scared because his X-ray showed a density on his lungs for the first time, and I didn't know if it would go away; I was sad because all of this was a reminder that CF *is* a part of our lives, that it is lurking in the background and could rear its ugly head anytime, no matter how healthy our baby has been so far.

Now our experience with CF has shown me again that beautiful things can come from serious challenges.  Ben is healthy again and back to doing his two maintenance vest treatments per day; we're back at work and back into our routine; our CF clinic is very happy with how he has healed.  And people are once again standing next to us as we fight our battle to find a cure.

I feel very blessed today.

Stay tuned to find out about the awesome Ben's Brigade items that are in the works!

The Dreaded RSV Hits Home

After a couple of days of high fever and obvious discomfort, Ben needed to be seen by a doctor.  We were able to get him in to see pediatrics at our hospital, but because his Tylenol had kicked in perhaps a little too well, he had no fever and was acting completely normal.  They didn't do much but tell us it was a cold and send us on our way.  He didn't sleep much at all that night.

Taking a nap the only way he could at the beginning of this illness.

The next day he woke up with a fever over 102--higher than any fever our kids have ever had.  He was whiny and miserable and obviously sick.  When I got home from work that day, he was still in pretty rough shape, so I knew we had to take him in or I'd never be able to relax.

As soon as we got to the ER, the triage nurse came out and made an announcement that it was shift change and thanking everyone for their patience.  He said he knew many of them had already been there for 3-4 hours.  I wanted to leave right then.  The place was packed with people who were obviously ill or hurting, and I couldn't help but wonder if I was overreacting.  Turns out, I wasn't.

Despite having taken Tylenol two hours before we arrived in triage, Ben's temp was still 102.  They gave him more fever-reducing medication and took us back much quicker than three hours.  All of the medical personnel we saw were knowledgable about CF (I know that seems obvious, but you'd be surprised!), and not once did someone act as though I was just a paranoid mother.  They kept a close eye on his temp, did a respiratory panel nasal swab to check for viruses, and requested a chest x-ray.

There was some debate about whether or not the x-ray showed anything, so we were there for quite some time while radiology and ER talked with peds to decide how to proceed (we wouldn't get swab results for a couple of days).  Finally, they sent us home with just-in-case antibiotics and instructions to call our CF clinic to review everything and advise on our next steps.

I called our CF nurse the next morning.  Since they're at the same hospital, she was able to look up the swab results and the x-ray and have the pulmonologist look at the films.

The bad news:  The panel came back positive for RSV, and the radiologist was right that there was a small density on the middle lobe of Ben's right lung.

The good news:  Clinic didn't want to admit him, since they said they would just be doing what we would be doing at home (increase vest treatments to 4x/day with 2 sessions of manual CPT--chest physiotherapy--in between, and give the amoxicillin as a safety precaution since Ben has cultured staph in the past).

RSV is rough on almost all small children, but it is particualry dangerous for kids with CF, asthma, and other chronic lung diseases.  (I recently spoke with a fellow CF mom whose little one is on day 11 of a hospital stay including oxygen because of this virus!)  We are very fortunate things weren't worse.

Ben has been fever-free and sleeping through the night again ever since our ER visit.  He is drinking fluids well again and acting quite like his old self.  Extra treatments keep us chained to the house, but if we can get our baby through RSV without permanent lung damage and get back to baseline, then it is worth every second!

Once the fever broke, he felt much better.

With a smile like this, we know he'll be back in no time.  We're not going to let a little RSV get us down!

When your kid won't eat much and a healthy weight is critical, a can of olives is a perfectly reasonable lunch request.

Great Strides SLC

Yesterday was the culmination of months of hard work.  Ben's Brigade started out as a little idea hatched by the AVID students at Sherman E. Burroughs High School in Ridgecrest, CA.  The students have been involved in fundraising for the Great Strides walk in Ridgecrest for a couple of years now, but this year they worked extra hard.  The school newspaper wrote an article about Ben, and I was invited to several classes to talk about what CF is and how it affects our daily lives.  This year the Ridgecrest walk had more people than ever before--and more high school students than ever before!  Together our little school raised almost $2,000 for the Cystic Fibrosis Foundation!

It was a bitter cold December morning for the Ridgecrest walk, and the wind (we don't way that word in Ridgecrest) was blowing hard, but there were still walkers all over the track.  They were bundled up in winter gear, but they were smiling and talking and waving at each other as they went.  It was a beautiful thing to see.

And that was just the beginning.

In Pensacola some dear friends of ours (both carriers of a CF-causing gene but whose son is CF-free) recruited some of their acquaintances to walk there for Ben's Brigade as well.  In Texas and in Washington, friends and family who couldn't join us in Salt Lake found somewhere to walk so they could show their solidarity.

And yesterday Ben's Brigade had over one hundred supporters walking with us through the beautiful buildings of downtown Salt Lake City.  Almost all of them were wearing their Ben's Brigade shirts and hoodies, designed by the incredible Nathan Galli and sold as part of our fundraising effort.  It was a beautiful day.  The sun was shining, the sky was blue, and the temperature was perfect (maybe even a little warm for all those hoodies!).  At the end of the walk, we took a group picture, and I presented the Ben's Brigade knife, lovingly and beautifully crafted by our dear friend Jared Williams, to my husband. The auction for the knife had been tense for a while, as both our fathers were (anonymously) battling to make sure it stayed in the family--and I was the only one who knew--but it was all worth it when I read my dad's letter to Smokey about why he was so determined to pass the knife from grandfather to father and, eventually, to son.

That night we held a thank you barbecue in Smokey's parents' backyard.  I have been trying to finish this post for several months, actually, because I don't feel confident that I can do justice to my feelings of love and gratitude.  Being surrounded by our friends and family members the morning of the walk was an amazing feeling, but being surrounded by them again that night as we relaxed after a long, hot day, was even better.  I don't have the words, and I don't want to cheapen the experience by trying to verbalize it.

At the end of the day, Ben's Brigade raised just over $10,000 for the Cystic Fibrosis Foundation, which puts 90 cents of every dollar raised back into research for a cure.  We are pretty proud of our hard work, and we are *very* proud of our supporters.  Thank you to every single one of you who shared a Facebook post, made a donation of time or money, bought a shirt, walked with us, or otherwise showed your support.  We have been truly overwhelmed, and we are truly blessed to know each and every one of you.

Ben's Brigade Booster Site Launched!

Yesterday we launched the website for the Ben's Brigade t-shirts and hoodies. We have been blown away by the response so far. We have already surpassed the minimum requirement for a 4-week booster, and we did it within 24 HOURS!!! I cannot wait to see our army of supporters walking through the streets of Salt Lake with their shirts on.

I will admit, I was a little worried about this fundraising stuff. I am not comfortable asking people for help in any form, and asking people for money is that much harder. Then, on top of that, I started worrying about how to present our situation in such a way that fully expressed to people what we are facing with CF without exploiting Ben or sounding all "woe is me."

I want to make it *very* clear that we love our lives. We are happy, and Ben is healthy--now. However, CF is hard. Every day. We are blessed that Ben doesn't require hours of treatments every day like many with the disease and that right now he is just an awesome little guy who requires a few extra steps. But every time I read about what many other CF parents go through on a daily basis, I am smacked in the face with the reality that it may not always be like this. We have been fighting with our local pharmacies to get a vitamin that Ben needs, and it has been very frustrating. Ben has to get two RSV shots every month as well as regular blood draws to check liver and vitamin levels--and all this in addition to his regular baby vaccines. Right now he's fighting his first runny nose and developing a small cough. I try not to let it worry me more than usual, but I am still learning where the line is between "regular baby sick" and "CF baby sick." Breathing treatments twice a day are a physical battle almost every single time, because our squirmy little worm wants to *move*!

And then there's the harsh reality of that life expectancy. It's easy to ignore it when it seems so far away. And it's easy to ignore it when I look at that sweet angel face and see my perfect, gorgeous, loving son smiling back at me or leaning in for a snuggle. But sometimes, when I least expect it (like right after launching the t-shirt site, for example), it hits me and I stop breathing for a second. And THAT--that moment, that feeling, that stark, brutal, all-out FEAR that I feel--THAT is why this matters more than anything else. That is why I can ask for your money even though it makes me uncomfortable. Because this Momma isn't ready to sit back and accept a 41-year life expectancy. WE NEED A CURE!!

I will never find a way to express my gratitude for your support in a way that makes you feel what I feel every single time someone signs up for our team, or buys a shirt, or shares the link on Facebook. But know that I notice every single time, and I have to fight tears of gratitude every. single. time. Your support gives me strength. And hope.

Thank you.

Diagnosis Day - How It All Started

On May 17, 2013, we received a call from the pediatrician's office telling us that Baby Ben's newborn screening test results were abnormal. We went in to talk with them, and they told us he tested positive for cystic fibrosis. They reassured us that screening tests often have a high rate of false positive results and helped set us up for a diagnostic test at Loma Linda. We were scared and worried, but we felt good about our chances. Ben showed two different genetic mutations consistent with CF. Smokey and I had no idea whether we were carriers (it's a recessive gene, so both parents have to be carriers in order for a child to have the disease), and neither of our families has any known instance of CF. We set up the appointment for May 23.

We spent the entire day at the CF clinic at Loma Linda. We spoke with a nurse, a doctor, a respiratory therapist, and a social worker. Smokey and I had our blood drawn. Ben was examined and given a sweat test (the diagnostic test used to identify CF). Before the end of the day, the doctor gave us the news: our little Ben has cystic fibrosis.

What we didn't know, because the pediatrician's office are not genetic experts, is that for him to have two genes would greatly increase his odds of having the disease. With two gene mutations, there was only a very small possibility that they could both be on the same chromosome, which would have made him just a carrier. The sweat test results came back within a half hour. We won't get Smokey's and my blood test results for a couple of weeks, but they don't really matter at this point.

Cystic fibrosis causes mucus secretions in the lungs, making people with the disease more prone to respiratory illness and sometimes causing lung damage. Many people with CF also have pancreas issues that hinder the body's use of enzymes to break down food and help with nutrient absorption. We are awaiting lab results to tell us more about whether Ben is pancreas sufficient or pancreas insufficient. There are varying levels of CF--some patients have a milder case and don't exhibit all of the effects, while others need lung transplants because of damage to their lungs over time. As of right now, there is no cure for CF, but management of the disease has come a long way. Decades ago, kids diagnosed with CF didn't often see their 2nd birthdays, and now CF patients are living much longer. However, many of them still don't make it past their 30's or 40's.

Obviously we are devastated. The positive in all this is that he is a very healthy little boy who is gaining weight like a champion. At his appointment last week, he weighed 12 lbs 7 oz and was 23 inches long already. This is good news, because it most likely means his pancreas is functioning correctly.

We were sent home with a very intimidating amount of stuff. We have an inhaler/mask with albuterol; he needs treatments of that twice a day. We have a contraption that we have to use to do percussive physiotherapy on his chest and back for 20 minutes after each breathing treatment. We have vitamins that we have to give every day. We have enzymes that we have to give before every feeding, which we have to give in a little bit of applesauce so they don't dissolve before they reach his stomach, and I have to do a sweep of his mouth before he eats to make sure they are gone before I feed him, because if they get on his face or my skin, they will burn. Once we have the results from the stool sample, we will hopefully find out that he is absorbing everything fine on his own, in which case we can discontinue the vitamins and enzymes.

We will need to visit Loma Linda once a month for follow-up appointments. We now officially qualify for the Navy's Exceptional Family Member Services, which means we may not be allowed to stay at China Lake any longer. They like members of the EFM group to be closer to a facility that can serve their needs.

There are a lot of unknowns in our life right now. We have a lot of questions and fears and concerns. But what we do know is that our little angel son is going to have some challenges ahead of him in life. He must be something really special, and though I am intimidated by our new future, I look forward to finding out just how much sunshine he is going to continue to bring to our lives.

Ben's Birth Story

At 28 weeks, I noticed some bleeding, so Smokey and I headed for the hospital, where they hooked me up to the machines to monitor contractions and gave me IV fluids.  Then we had an ultrasound to make sure Baby was ok in there.  We stayed for a couple of hours at least, until they were satisfied that everything was ok.  Finally, I was discharged with instructions to stay on modified bed rest over the weekend (as a precaution).  I saw Dr. Stone the next week and she declared everything ok.

On Saturday morning, April 13, I decided to shower.  This was unusual because I typically shower in the evenings, but I just really felt like I needed a shower.  After getting out of the shower, combing my hair, and putting on my lotion, I was exhausted.  I decided to lie down on the bed for a minute to rest.  Smokey and Marley were cuddled up there watching one of Marley’s shows.  I had only been lying there for a moment when I felt a little feeling like I might have peed a little bit.  I rolled off the edge of the bed to quickly go to the bathroom when…whoosh!  My water broke, just like in the movies, and my pajama pants were soaked.  I shakily told Smokey what had happened, waddled to the bathroom, and called the hospital.  It was 9:30am.  They told me to come immediately.  We rushed to pack Marley’s bag and called everyone we knew, but no one was around to take her for us, so we packed her into the car with us and drove to the hospital, hoping someone would get back to us quickly.  Ben’s due date was April 28.

On the way to the hospital, I started really noticing the contractions.  They were pretty frequent and fairly painful already.  Once we got to L&D, they put my in a room, hooked me up to all the machines, and checked my progress.  I was only dilated to a 2.  (Fortunately, Mary called back around this time and came to pick up Marley.)  It hadn’t been long when suddenly I was being rolled onto my side and given an oxygen mask.  I started to feel scared, and I kept asking what was happening.  There were a lot of people doing things around me, and finally Dr. Battaglia leaned over me and told me that the baby’s heart rate was dropping.  Although it would pick up again, she was concerned he couldn’t wait for me to progress, and she decided I needed an emergency C-section.  I was devastated.  And terrified.  I started to cry and say “No.”  Smokey and the doctor talked to me and calmed me down, and I started to understand and accept that this was the best option.  Then things really got busy.  There were so many people in the room, and everyone was doing something to me.  The anesthesiologist came to ask me some questions and sign the consent form, they gave me a catheter (yep--*before* the spinal, which did not make me happy), and they wheeled me off.

In the OR, they were still monitoring the situation and deciding whether Smokey was going to be able to come in, so I was really scared about doing the spinal without him.  The nurse was amazing.  She held my hand, talked to me about the whole thing, and reassured me that I wasn’t being ridiculous.  Suddenly, there was a warm rush all down my lower body and legs, as though I had peed myself.  That was the medicine.  They laid me down and immediately starting rubbing an alcohol swab on my skin to test my numbness.  I did not trust that I could be that numb that quickly, and I was terrified I was going to feel it when they cut into me.  I don’t think I’m a very good patient.  Regardless, everything was underway.  Smokey was able to come in, Dr. Stone showed up to help, and they were off.  There were a scary couple of minutes after they took Benny out where we didn’t hear him crying.  As soon as I heard that sweet, sweet sound, all the fear and relief and emotion of the morning broke over me in sobbing waves.  It had been about two hours since my water had broken that morning.

They told me they had to take Ben to the nursery while they closed me up, so I told Smokey to go with him.  But first they brought him to me so I could snuggle and kiss his beautiful little head.  Then they whisked him off to get cleaned and checked.

The closing up process is long and hard.  You no longer have the stress, the anticipation, the adrenaline keeping you distracted from the fact that you can feel them digging around inside you and stretching your skin to cover things up.  I started to feel very sick, and I had sent Smokey to the nursery.  I asked a question, and the anesthesiologist immediately got up from what he was doing and came to my side.  His manner felt very caring and paternal, and I will forever be grateful to him for helping me through that part of the procedure.

My little Ben made quite the entrance into this world, and it has been a whirlwind ever since.  He is stubborn and sweet and funny and loving, and he is my little miracle.  I love him more than I can say.

Stats:  Ben Gibson Hawkins was born at 11:24am on Saturday, April 13, 2013.  He weighed 8 lbs. 11 oz.