A Delayed Update

So May has come and gone and June is nearing its end as well and I have been a negligent blogger once again. To be quite honest, May and June are just two tough months in the world of education. 
So, we went to Chapel Hill on June 2....Emily's weight was back to 77 pounds and her lung function was at 97%...needless to say we were thrilled and so very thankful. Seems like we finally put a halt to the mycobacteria....hopefully it won't rear it's ugly head again for a long, long time.  I suspect by the end of the summer her lung function will be even higher after a summer of swimming and eating!
The kids ended the year on a great note.....Donnie had a great semester at NC State, Douglas finished eighth grade with two high school credits, and Emily (even with all the school she missed this year) was able to pull off some great scores on her EOGs (in NC education lingo that means "end of grade" standardized tests). 
A highlight since my last update was the Great Strides walk this year.  It was held on May 14th (my mom's birthday, which made the day even better). So many people were able to come out this year--a bunch of Emily's soccer family, some of her teachers, and many other friends.  Emily's Team ended up raising over $8,500--our highest total yet in six years!  I am so proud and appreciative of all our family and friends who participated through walking and donating.  I truly believe in my heart that our efforts will not go unheaded and our Emily will have a cure sooner, rather than later.  I've added some pics from the walk! Enjoy--and if you couldn't be with us this year, hope you can make it next year!

Continuing to Fight M.A.

So we are expected to get out of the hospital in the next day or two.  We are both ready to go home (haven't been there since Apr.7)--Emily misses Scooter terribly as well as her dad, brothers, and friends, of course.
We have started a six week course of treatment to fight the mycobacteria abscessus, again.  She cultured it at a 3+ level (on a scale of 1-4) so that is pretty significant and her doctor truly  believes it is what is causing the drop in lung function.  We are using amikacin, azithromycin and imimpenim this time--she has tolerated all three of them very well.  Did lung function testing on Monday and we are up to 89%--that is a great improvement from 74% in March, but only half way back to our baseline of 105%--in reality we may not get back to 105% but, I believe we can get close to that by the end of this treatment.
We are also treating the aspergillus that Emily has recently cultured.  We are using Voriconazole for it and hopefully it too will be gone! 
Amazingly, no other regular bacterias have shown up in her cultures which is a wonderful thing!
For so many years now, I have always felt we were able to keep all the complications of CF at bay, but in the past 6 months, I realize how quickly things can change when someone has CF.  I hate that this is going to be my Emily's life...constantly battling the next bacteria that comes her way....while she is definitely a fighter, it makes me sad that she will be fighting always.....well, until that cure is found. 
I am going to include some pictures from our hospital stay in this posting.  We do a lot of interesting things to stay busy! :)

Hospital Stay #3 for 2011

Hopefully this is the last time the words "hospital stay" will be in the title of my postings.  After a few days in Va visiting with cousins and grandparents, we returned to UNC yesterday to do a pH probe for 24 hours to determine if Emily could be having silent aspirations which could be causing some lung function issues. 
After the team talked at length about Emily's cultures-she is still culturing the mycobacterium abscessus and aspergillus--it has been decided that we will treat the m.abscessus again because her right lobe is still filled with secretions and her PFTs remain in the 80s. One of the antibiotics will be changed this time, but it does mean another six weeks of IVs.  Needless to say Emily wasn't thrilled with this news, but hopefully this time will do the trick and we will get her lung function back to where it needs to be.  Emily continues to amaze me every day--she, and all those that deal with CF, have a strength in them that is beyond any strength the rest of us have or ever will have! 
On a happy note we had a great time in VA--picnic, miniature golf, and the roller skating fundraiser at Rollerworks (Hugo's to those of us who grew up in Fauquier County). This event was to raise money for our Great Strides Team for the walk in May.  It was a great night--enjoyed seeing a lot of old friends and family as well!

Hospital Stay #2 for 2011

So, we arrived at UNC Children's Hospital on Friday, April 8. Emily started her day with a bronchoscopy--since nothing had shown up on the cultures and it had been a couple of years since she had a bronchoscopy Dr. wanted to make sure we knew exactly what was going on. The bronch made for a long weekend of fever (and some nausea), but by Sunday evening she was feeling a lot better. The bronch revealed that her lower right lobe is filled with secretions and there seems to be a lot of infection which explains the drop in PFts to the 70s/80s (she is normally well over 100%). We have started on two IV antibiotics--tobramycin and timentin--two new ones we haven't used before. These may change depending on what the cultures reveal tomorrow from the bronchoscopy. We will be staying at least until Friday, maybe longer, depending on all the variables--lung function testing, culture results, etc. Dr. needs her here to do everything we can to get her numbers back to where they were. And we pray that we can make that happen. Emily is in good spirits--she always seems to crack a joke or give one of her infectious smiles...even when she is feeling bad--so many of the kids here seem to be that way.....guess we could all take some life lessons from them! :)

IVs Round 2

So, Emily finished her last IVs for the mycobacteria, only to go back to UNC to get her picc line out and discover that her PFTs were in the 70s (she has NEVER been this low). So, did cultures which didn't show anything and went back again to find we were still in the 70s. So, she started Pulmozyme for the first time.....returned to Chapel Hill yesterday and we are now up in the 80s, but her normal is over 100! Did a CT scan of her lungs too and sbo the doc wants to put her in the hospital to treat staph and pseudomonas. As you can imagine Emily is quite tired of all of this, but at the same time....we will NOT accept that this is a new normal for her. So we fight, and we fight hard. I think that is the hard thing about CF--you fight hard every day to stay healthy. It takes a resilience and determination beyond just about anything I've ever seen. And one of the hardest things in the midst of this fight is that people don't really "see" CF. So many times I've heard..."she looks good" or "she doesn't look sick"....for the most part, it's on the inside, so no, she won't look sick even when she might be.....and while that is a good thing...it makes it hard for people to realize how hard Emily fights every day. Ten medications each day, 4 to 6 pills each time she wants to eat and and 90 minutes of treatments a day is what it takes to keep her breathing and maintaining her health the way she needs to....she is a fighter and always will be....because we WILL beat CF! And as I end this post to my blog I realize this little excerpt leads right into Great Strides....won't you be a part of Emily's Team? Help her fight the fight of her life? Join our team and help us raise some funds or make a donation if you can't join us! Let's do it! Every penny counts! Click here for Emily's Team! The walk is May 14th!

Guys and Dolls

So last night Emily was truly amazing! She spoke at the Guys and Dolls annual fundraiser for the Cystic Fibrosis Foundation-Charlotte Chapter. The event has some "guys" and "dolls" who create packages (mostly mini-vacation/long weekend type) to auction off! There was a silent auction as well. In the midst of the live auction they had Emily tell her story. And let's just say there were grown men shedding a few tears! She told her story with such poise and truthfulness that I don't think she even realizes what an impact she has on others when she does this--but she does it because she knows the money towards research is her future! Right after she spoke they did "Bid for a Cure" and raised $20,000 in about 10 minutes--all from the words Emily shared from her heart. My mom was able to attend with us this time which was wonderful to have her there to see first hand how inspirational Emily can be when it comes to telling her story.

Speaking of mom--she and dad have been staying with us through this round of IVs. It means so much to have them here with us when the IV schedule can be draining on all of us, Emily especially. Having Grandma and Papa around make these long days a little easier and happier for her. As I sit here this warm and sunny afternoon, updating my blog, our sweet Emily is sound asleep on the couch. These treatments sure take a lot out of her but no matter how bad she feels or how sick she gets with her stomach from the antibiotics....she has a strength that is beyond words!

I have included a few clips and pics from last night's event! Thanks to the girls in the Charlotte office for their work on this event and thanks to all of those who attended last night--you made a difference in the lives of others!

Ready for 6 Weeks of Treatment!

So, we got back home on Wednesday and what a relief it was to sleep in our own beds! So Emily is doing tigecycline and imipenem by IV and oral clarithromycin to treat the m. abscessus. Last night was the first time she was on all three antibiotics and let's just say they have been rough on her stomach! Feel bad for the girl when she's like that! Started using the zofran before IVs this morning and that seemed to do the trick as she has felt quite better today.
So treating the m. abscessus is hard on a 10 year old. She is hooked up to IVs for 5 hours a day total and we are doing chest PT 4 times a day for 6 weeks. Not to mention all the regular meds and some extra vitamins here and there. Not much time in the day for fun when all of that is said and done. But, Em has a remarkable spirit and always seems to find the positive in things. If we all had her attitude and sense of faith and hope...well, let's just say the world would be a better place! Hopefully, this is the last time we will have to treat the m. abscessus!

PICC Line #6

So here, it is the last day of January 2011 (actually it is February 1st now). Here we are back at the Hill. The ol' m.abscessus has reared its head again, and Emily has officially had her 6th PICC line placed. She did well today....got a little upset with the IV to sedate to place the PICC, but over all, she showed, once again, what a tough and brave girl she is. (Mom won't lie though....my heart hurts every time I see her get upset with all of this!) So, there's a national shortage with the amikacin right now, so we are trying a new drug, tigecycline (along with imipenem and clarythramycin). Hoping this does the trick.....it's a six week battle to hopefully get rid of it for good. So many unknowns still with this bacterium.
I hope and pray this is the last PICC she has to do for a long time....three times in a year is a bit much, although I know many CFers endure much worse, so I guess we should just thank our lucky stars that we have only had 6 PICC lines. I guess in the big scheme of things, not so bad...that's an average of once a year since she was diagnosed six years ago. The hard thing about the m.abscessus is that it is a six week treatment, so it's double the time for most other bacteria we have treated.
Em's spirits are good. She loves to joke with and talk to the nurses and other staff. I love her spirit! Even when she knows her favorite things like playing soccer and horseback riding are on hold, she doesn't let it get her down! I love this girl!

Not Quite So Long Lost (getting better)

So, we have made it through the holidays and stayed fairly healthy, until recently. Emily had her check up on December 7 and we recently found out the dreaded mycobacteria abscessus is back! Why oh, why? We are waiting for sensitivity testing right now--to find out which drugs will be an option to treat this once again. It is a hard regimen with three antibiotics, usually a couple IV and one oral...and the last time we did this for six weeks. Em was actually hooked up to IVs for 4 1/2 hours a day! So, for now we wait--Em's actually feeling bad this weekend, been real congested and running a fever. Calling for snow on Monday, so looks like we might have a long weekend for her to rest up.