Holly’s Story

Site created on January 28, 2012

Welcome to my CaringBridge website. I've created it to keep family and friends updated about my health and treatment.

I encourage you to sign up for email updates to read the latest journal entries. Please enjoy the photo gallery and write a note in my guestbook anytime. Know that I will read and treasure them all.

I've had Cystic Fibrosis all my life, which has been it's own challenge. Even so, again and again I've seen the Lord God use CF and it's effect on my life to grow me and my faith and also to encourage others around me. In 2008 I had a (freak/unrelated/extremely rare) Astroblastoma brain tumor. 

Because of the unusual presenting symptoms of only nausea and vomiting beginning in May of that year, the diagnosis was a very long 4 months in coming. By the time the tumor was discovered in September 2008, my health and life were in such critical condition that we had to do surgery immediately and ask questions later. Recovery from the surgery was long and arduous. Because of my CF, I had many complications and finally healed 3 1/2 months after the surgery. At that point, January 2009, it was time to begin radiation to prevent regrowth of the tumor, which required 6 more long weeks of treatment. We had a great deal of love and support from the people around us and God used them to carry us through. We are so thankful for their presence in our lives then and now. 

After I finished radiation in February 2009, it was time to begin rebuilding my health and life. Because I had been so sick for so long (10 months) recovery was very slow. Finally in July 2010, I began to feel like my old self again, but unfortunately, damage had been done and my immune system and energy level were significantly destabilized. Instead of going into the hospital less than once a year on average, I needed hospitalization approximately every 7 months and my body was having a very difficult time (sometimes taking up to 2 months) recovering from each round of high-powered antibiotics.

In October 2011, just weeks after climbing all 70 flights of stairs in the Dallas, TX Bank of America building to raise money & awareness for CF, I ended up in the hospital once again. Routine scans performed earlier in the month revealed a new brain tumor. John and I were in shock, totally blindsided. Though I had been unable to recover my previous level of health, we had received so many "all-clear" scans, that we'd begun to feel safe. From October 2011 to February 1, 2012, we traveled to doctors and hospitals at least once every week, except the two weeks over Christmas break that I purposefully kept clear. But, all those appointments were necessary to perform all of the MRIs, CTs, LPs and to go over the results with my Dr's and make plans.

And that brings us to my first journal entry...

Newest Update

Journal entry by Holly Loughlin

A few weeks prior to our trip I started being more short of breath. Over the course of 2-3 weeks it escalated to me coughing a lot more and bringing up much more mucus. My cough was even waking and keeping me up, which is not at all usual for me at this time. I was keeping in touch with clinic and ended up going in for an appointment with PFTs a few days before we were scheduled to leave. I didn't exactly feel sick the way being sick usually feels to me and that made figuring out what to do more challenging. 

My PFTs were down some, but not hugely, so considering all the factors, we decided to 2 weeks of an oral antibiotic. Orals alone do not usually work for me, but I was really hoping that it combined with everything we were planning to do in Indiana would be enough to kick whatever was going on. So, we packed up - and let me tell you, it always looks like we are moving! My Afflovest and charger, compressor, nebs (nebulizers), fridge meds & a cooler for the fridge meds, oral meds in pill organizer, regular neb meds, bag of neuro tools (we forgot the chargers, but the team has plenty, so we borrowed theirs), clothes (it's winter? So, layers), knit/crochet bag, my book to read, Bible and Greek-learning books, phone and charger, toiletries, pillows, and blankets. J then also has to bring his clothes, meds, school books, Bible, toiletries, pillows, blankets, and cpap. AND we decided Eli was ready to go with us this time, so him, his gear, crate, toys, food, and treats. Since the place we stay has a kitchen, we also stopped by Aldi on the way in to get groceries. 

We had church Sunday morning, so we came straight home afterward and loaded up what we'd already packed as well as all the last minute things. I was wiped out, so as tired as he also was, J drove first. I fell asleep almost immediately and didn't wake up until we were through Chicago. About halfway we switched and I drove. Eli did great. He loves car rides and going literally anywhere. He has such FOMO that he just wants to do whatever we're doing. 

We got there about 9pm their time (an hour ahead of us), so we just dumped our stuff inside, made dinner, (did my treatment), and went to bed. It was a looooong day and we were all pooped, but it was a good day.

Stay tuned for Day 1 recap...
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