Emily's Life with Cystic Fibrosis (and other anecdotes of the Lawrence Family)

A Delayed Update

2011-06-22T19:54:00.000-07:00

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.

2011-04-27T09:10:00.000-07:00

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

2011-04-21T07:46:00.000-07:00

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

2011-04-11T10:27:00.000-07:00

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

2011-04-06T17:38:00.000-07:00

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

2011-02-27T12:48:00.000-08:00

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!

2011-02-03T20:52:00.000-08:00

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

2011-01-31T21:40:00.000-08:00

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)

2011-01-08T20:07:00.000-08:00

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.

Long Lost Blogger

2010-11-05T21:09:00.000-07:00

Well I haven't exactly been a very good blogger in the past months. We survived the last rounds of IVs in February and had a healthy and fun summer. Emily participated in a research study on hypertonic saline at the CF Center at UNC--it was a great opportunity to "give back", and we learned a lot in the process. Near the end of the study they did cultures and we discovered that the ugly pseudomonas had reared its ugly head once again! So, Emily started Tobi for the first time. Now, several weeks later, her cultures have come back clean! Yay! But, don't get too happy, too fast.....she had trouble hearing out of her right ear. Immediately we all thought it was from the antibiotics, but as things should turn out, thankfully, the reason was due to fluid....so today, Emily had a tube placed in her left ear. It was an easy task compared to some of the things she has endured, but so thankful we could restore her hearing. And now, we face winter --head on! Our goal, and our prayer is to stay healthy! No hospitals, no IVs! Let's see if we can do it!

IVs Round Two

2010-01-08T08:29:00.000-08:00

Well, we finished the IVs for the pseudomonas, only to find out that Emily cultured mycobacteria abscessus too! It took several weeks to get the susceptibility testing completed and so we have started IVs again for this one--we are doing amikacin, cefotoxin, and clarithromycin...this is a six week treatment...then our plan is no more IVs for a looonnnggg time. Emily was sick to her stomach the first day or two, but then things have settled down. We leave the hospital today! Yay!
We took the first picc out two days before Thanksgiving so Em could be a kid for a few weeks before we had to do this again. And so glad we did as we were able to go to Virginia for Christmas and there was two feet of snow to play in. She had a blast, as did her brothers and cousins! It was a wonderful Christmas to be with family and have a white Christmas (not something we get very often in NC). We also enjoyed having Donnie home from college for a few weeks...Emily misses him terribly! Well, that's all for now, will post some pics soon, need to download from the camera...I'm a little behind with this!

Almost Three Years

2009-11-04T19:16:00.000-08:00

Well, we were one month shy of being off of IV antibiotics for three whole years! Unfortunately, we went for a check up at Chapel Hill last Tuesday and found out by Friday that Emily had cultured pseudomonas. This was the first time she cultured this so it was a little overwhelming. Anyway, we came in and did a bronchoscopy yesterday and they put in a picc line. Emily has been the bravest girl ever, once again. When they changed the tape on her picc line today she didn't even cry--she said "that's the first time I didn't cry!" I was like "so true". Then she proceeded to tell me a memory she had from her first hospitalization when she was four--"mom, remember when the lady came in to change my tape and I locked myself in the bathroom." I had forgotten all about this, but it sure brought a good laugh for us this afternoon.
We hope to be home by Friday if all goes well. We will do IVs at home for three weeks. I will try to be a better blogger and update like I should--I totally missed some important milestones since my last post, like sending my oldest off to college. Will do a better update when things get settled.

Late Update on Great Strides

2009-06-23T06:42:00.000-07:00

Well, I am a little late getting an update on the Great Strides walk in Monroe. This is the second year for this walk (they used to have it here about 10 years ago). We more than tripled our original goal of $9,000--I was amazed at what all of our teams accomplished. It was fun to have several new teams this year. Hope we grow again next year! The weather was perfect and everyone had a great time! I've included some pictures of the day!

Emily's Team 2009!

Emily and her second grade teacher, Ms. Marks,

and her first grade teacher, Mrs. Malley (with hubby)

Emily and "her sign"

Panthers Kickball Game--CFF Fundraiser Event

2009-04-25T14:35:00.000-07:00

Douglas, Emily and I spent a hot afternoon at the Kick CF event in Charlotte (http://www.kickcf.com/). Several Carolina Panthers players have a kickball game with a local business. It is a fun time for all. They raised about $60,000 last year--not sure what the total was today, but I am sure it was substantial. Kudos to Panther Jordan Gross for starting this annual event last year (he has a niece with CF). I met a lady (wished I had gotten her name) who had made beaded bracelets for a CF fundraiser for her Great Strides team. She has two boys with CF--both have mic-key buttons. It was so hot they had their shirts off and Emily saw them and asked what they were. I have told her in the past that she might have to get one if she did not keep eating good. So, she asked lots of questions about feeding tubes (which I did not have a lot of answers to) and really paid close attention to the boys. I could tell she was deep in thought and I think it was yet another one of those learning moments she had about CF.....Here are a couple of pictures from the day!

Antibiotics, continued and Spring Break

2009-04-21T16:47:00.000-07:00

Well, we finished three weeks of Bactrim--which did not seem to touch Emily's current congestion--so now we are in the middle of three weeks of Augmentin to see if that will do the trick. Hopefully! We go back for a clinic visit in two weeks so we hope for a good report and improvements by then.

For spring break we met my folks in Gulf Shores, Alabama. They had their camper at the state park and Douglas, Emily, and I stayed there with them. We really enjoyed the time with them in such a beautiful place. We went to Fort Morgan (biggest naval battle of Civil War), the beach, an amazing trail, Pensacola to see the Blue Angels. It was a busy time but so much fun. Donna and her family were there the week before so we overlapped our stays by a couple of days so "the cousins" did get to play together for a bit. Here are a couple pictures from the trip.

Time for Antibiotics and other info

2009-03-12T15:55:00.000-07:00

Well, Emily has done so well for the last couple of months, but as fate would have it she has developed a cough and is starting a three week run on Bactrim. We are hoping this will do the trick as she is not sleeping well from coughing which is interfering with her day routine. Time will tell....

Big brother Donnie just got a job at the grocery story--this will be a great learning opportunity for him while also helping him put some money in his little nest egg for college in the fall.

I was playing around with pictures this weekend and reminiscing. I found some pics from when Emily was hospitalized for the first time. Here's one I especially liked with her all decked out in her Carolina outfit (GO 'HEELS). My how my baby has grown in four years--and my how much our lives have changed.....

Final Bronchoscopy Results and Great Strides Kick Off Meeting

2009-02-07T17:02:00.000-08:00

Well, after allowing Emily's cultures to grow out from the bronchoscopy for several weeks I finally had confirmation that she grew no bacteria! This is amazing news, at least we know there is not a terrible bacteria that is responsible for her slight decline in lung function. So now when we go back to the dr. next month we will discuss what could be causing this . . . like I have said previously her current function is not bad, it is just not as high as we have had it in the past.
On Thursday we had our kick off meeting for team captains for our Great Strides walk on May 30th. There were several new faces/teams--Donnie's high school National Honor Society is going to have a team, there was a mom of a one year old who was just diagnosed, and a 19 year old girl with CF who is walking in Great Strides for the first time! It was an exciting meeting to know we are going to grow our walk this year-it is only the second year we will have it in Monroe, NC (Union County) and I am so excited about the prospects!

Still Waiting

2009-01-19T06:46:00.000-08:00

As of Thursday, nothing has grown out on Emily's cultures. The nurse did say that it can take a couple more weeks for some organisms to grow out. I know this is so because last April Emily had an excellent report and then two weeks later they call back and tell me she has ORSA--it took nearly three weeks for it to show up. So, for now we wait and wonder. A part of me wishes she would culture something so we could treat it, especially since we are baffled by her decline in PFTs--at least if she cultured something there would be an explanation for this.
I have been sick most of the weekend--I get these stomach attacks that have all the symptoms of gall bladder disease--and it takes me a few days to get over it.
Douglas won another basketball game yesterday. He had eight points himself--I didn't get to see it, but I got a nice recap from the boys.
Well, need to go work on tax stuff, so have to go for now!

Some Good News

2009-01-10T18:44:00.000-08:00

Well, Emily had her bronchoscopy yesterday. The doctor reported that her lungs actually looked really good--not as much secretions as they thought there would be. So, we did not do an admit and IVs at this time. We will wait for the culture from the bronchoscopy to find out what she may be growing down there and then make plans for our next steps from there. We went ahead and stayed the night up there with my folks (they already had a room booked)--that way we had some time to rest before we traveled back home. I got home today in time to see Douglas' basketball game. He had a great game with many assists and his team won 42 to 29--they lost to this team the last time they played in a double overtime so today's was an exciting game!
Will post again when we get results!
Have a wonderful rest of the weekend.

Emily Update

2009-01-03T19:28:00.000-08:00

Well, I talked with Emily's doctor yesterday. Since she has been on oral antibiotics since early November, and she is still not "clear", and we have had a slow decline in PFTs and she has lost some weight . . . we are going to do a bronchoscopy. It has been two years since Emily has had one, so the doctor thinks this may help us find something we are missing. We may start IVs at that time as well, depending on what they find with the bronchoscopy. She will probably go in on this Friday, but we will finalize the plans on Monday. I have already talked with Emily about this as she likes to have a full grasp of things that are going to happen to her (after all, this is the girl who since the age of 4 has refused to look away when they draw blood). I am apprehensive as we have not had to go down this road in so long, but I try not to show it in front of her. It will be a long week back to school with all of this looming ahead, but I know in my heart that we need to do something to get her back to her baseline. I will follow up from there . . .in the meantime please pray.

New Pictures

2008-12-20T12:03:00.000-08:00

Today I picked up the pictures of the kids. We had them done a couple of weeks ago. It has been 4 years since I had their pics done all together. I have posted a few of my favorites below.

Memories

2008-12-17T15:21:00.000-08:00

Well, I was able to upload my one true media video of Emily to YouTube. You can access it on my page. As I watched it I took a little trip down memory lane, so to speak. Most of the pics and video clips are from Emily's first stay in the hospital at UNC when she was diagnosed. I remember how little I knew of CF then, and how scared I was. Those three weeks in the hospital were the longest three weeks of my life as I educated myself about cystic fibrosis and as I learned how I had to care for her. During this time one amazing story comes to mind. . . . a week before we headed off to the hospital we visited the local library. Emily was insistent on checking out a book called Philadelphia Chicken by Sandra Boynton. Okay actually she threw a fit about getting it. It is basically a book of songs with the accompanying CD. I was reluctant to check it out as we tend to misplace CDs at times. Emily pleaded and pleaded and finally I gave in. We started listening to it in the van--it had some catchy tunes--and basically she loved it. We all did and it actually created some happy fun-loving times while traveling down the road singing at the top of our lungs during this very emotional time. When we went to the hospital a week later of course the book and CD had to come with us (never mind we would owe a late fee by the time we got back). About a week after we had been at the hospital I was perusing some materials the nurse had given me from the CF Foundation. One item was a newsletter--a particular article caught my eye . . . I quickly discovered that Sandra Boynton was donating proceeds from the Philadelphia Chicken book and CD to the CF Foundation. I immediately began crying as I thought back to that day in the library when Emily insisted we check out the book--it was as if she knew she needed this book to help her (and all of us actually) get through the coming weeks--a time when she had just been diagnosed. This book had carried us through a very hard time and it was obviously meant to be! I found the author's website and emailed her my amazing story of how Emily just knew she had to have this book and all of the joy and comfort it brought her during the time fo her diagnosis and first hospitalization.
Here's a link to the book if you are interested. It sure can make you laugh, smile, and sing on the worst of days. http://www.amazon.com/Philadelphia-Chickens/dp/B0001ADB6Y
You can listen to some of the samples too!

A Bit Delayed

2008-12-16T16:01:00.001-08:00

Had to laugh when I logged on here. Okay, was it really April when I started this???? Well to make a long story short, I was promoted to principal shortly after that and well let's just say life has been very busy.
So, Emily's PFTs have slowly declined from 126% in April to 105% in December. Now, don't get me wrong, I know that 105% is really good, I just have this mindset that if we can achieve 126%, then that is where we need to stay. In my heart I know that when a "cure" comes along it will make a difference in Emily's life, but it will not undo any damage that has already been done.
So, with today's report it wasn't the best, or the worst. We have done 3 weeks of bactrim--two week off--got sick again, 3 weeks of clindamycin, and still not where she typically is after a couple of rounds of antibiotics. So, we are going to do two more weeks of clindamycin and see what happens from there. Emily's weight has dropped to the 35%ile--so we are starting Scandishakes to get her some extra calories.
It was a long day up to UNC, as always, but well worth the drive for the care Emily receives. Hopefully we can get her back to where she can be in PFTs and weight in the next few weeks . . .

Simply Amazing

2008-04-08T17:03:00.000-07:00

In my original post yesterday, I said I was going to recap Emily's diagnosis, however, Emily had her three month check up today and I couldn't wait to post the results.
This was the most amazing visit! Emily's PFTs were 126%! The average PFTs for a seven year old with CF is 95%! So, you can understand how exciting this news was for us! It was her best EVER! Also, for the first time EVER, Emily moved to the Outstanding category in terms of her weight! Nurse Sheree told us it was like getting an A+ on an AP English test. I couldn't agree more! Now, I pray and pray and pray that we keep her here! While weight and PFTs were phenomenal we did have a lengthy conversation about the Ph probe test results from two weeks ago. The data showed Emily is having many episodes of reflux, even with 30mg of Prevacid twice a day. Dr. Davis is consulting with the GI specialist and will let me know on Monday what we will do to address this!
'Til next time . . . .
Cheryl

Welcome

2008-04-06T09:17:00.000-07:00

Hello, for those of you that don't know me, I am Cheryl Lawrence, a working mom to three wonderful children, Emily, Douglas, and Donnie--and an amazing, supportive husband, Seth. Our daughter Emily was diagnosed with cystic fibrosis in February 2005. This was a life altering time for us and it began my journey of learning about and understanding cystic fibrosis so I could provide the best support and care for my sweet little Emily.
I was prompted to start this blog because (1) I have always loved to write to express myself and (2) I have been inspired by Nate's blog (www.cfhusband.blogspot.com) for a couple of months now(if you have never been there it is an incredible story-check it out!). I have so loved following his blog--how he has perserved Tricia and Gwyneth's story and made them real to me and thousands of others. I thought creating my own blog would be a wonderful opportunity to perserve Emily's story and life with CF. And so, I will begin her story in my next post with the hopes that one day she will want to continue it herself. Several of my next postings will be reflections, and in a way, therapy for me as I think back through the past three years when cystic fibrosis entered my life and the life of my family.