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Emma Quinn Welcome to Emma Quinn's Web Page. Our daughter Emma was diagnosed at 2 1/2 yrs old with MPS1-Hurlers Syndrome. In February, 2002 Emma and Mom moved from our home in CT to NC where Emma received a Cord Blood Transplant at Duke University Medical Center. Emma is now 2+ years post transplant and doing well. This website is intended to share with you our journey.
Journal
March 23, 2004 I am sure for those of you who every so often take a peek at Emma’s webpage you will be shocked beyond belief when you see an update. Yes, I know I have just been terrible about updating.
Emma is doing very well. She and I returned from Duke last week for her 2-year post transplant studies. We decided she was healthy enough to fly this time rather than endure the 10-hour drive with endless runs of Emma’s latest new video favorite. What an easier trip it made for us! I’ll get to all their findings in a minute.
Well there’s a lot to tell so get a cup of coffee. So much has happened since my last update, which was over a year ago – rather embarrassing!!!
We have done so many wonderful things over this past year and are ever so grateful that our Emma is able to join in on the fun. We spent a good amount of time at Cape Cod over this past summer. Emma just loved running around with her cousins on the beach. The beach is just a wonderful playground filled with so many things to do. I think the sun and the salt air did a world of good for both the body and the mind. Her skin never looked so good!
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Emma started school in October going 5 afternoons a week. Having older siblings heading off to school each day, she was more than ready to join the bunch. She was however; very disappointed that she did not get to ride the big yellow school bus. Instead Mom – not a lot of fun, escorts her but it will do. She meets up with her class and skips away with a huge smile and a big wave. She hasn’t had any separation anxiety - a little would have been nice. While in school she receives her therapies (speech and OT). Emma loves just about every aspect of school. She so wants to be a good citizen leading the class in both manners and being the class tattletale – nice, huh?
Halloween was met with quite a different attitude this year. Emma had so much fun trick-or-treating with her siblings and their friends. Her first choice for her costume was to be Lizzie McGuire. Can you tell she has a 12-year-old sister? Mom nixed the Lizzie idea and Emma settled for Dora the Explorer. Emma quickly got the idea and the thought of ringing the doorbell and getting candy was all too much. She was a trooper and did her best to keep up.
Jack and I hosted Thanksgiving this year. We have been married for 18 years and have never hosted the holiday. For those that know me, cooking is not one of my fortes and this holiday is all about the food! But we felt it was our time and we had so many things to be thankful for. Family and friends from Dallas, Boston, New York, Washington DC, Jacksonville and New York came to help us celebrate. It was one of those holidays that will go down in the books. Two years ago near Thanksgiving, Emma was diagnosed with Hurlers. When she was first diagnosed we were left with little, or no hope, and no options. And to look at this 4-year-old little girl now, she lifts your spirits and fills you with such hope. This years Thanksgiving was a day of thanks for us for so many reasons.
December started out a bit rocky for Emma. In the 1 year 9 months post transplant Emma hadn’t really been sick. But with the beginning of school (and with an immune system not yet fully recovered) Emma came down with her first bout of sickness – a nasty ear infection. The antibiotic killed both the good and the bad bacteria, which in turn led to C-diff, which led to massive diarrhea and weight loss, dehydration and home health care coming in to run IV fluids. At this point I pulled her out of school living in fear of cold and flu season. If this is what an ear infection could do to her, I can’t even imagine what the flu would do to her little body. Thankfully that was not to be and the rest of the family remained healthy. It was a reminder of how quickly things can turn.
Christmas this year was filled with such joy. Our families best present ever was our Emma. Without really knowing it, her siblings look at her with such love and admiration. The joy of watching the kids interact is enough of a Christmas present for Jack and me (not that it’s always that way in our household!). If you ask Emma the best present under the tree was a pair of pink rollerblades with matching pink and purple pads. It is quite a site to see her try and keep up with the others on their rollerblades. On Christmas afternoon we headed off to Cape Cod to join Jack’s family for Christmas dinner. And this year…Emma got to join in with the others. It truly was a festive day.
Emma returned to school after February break and so far has been able to steer clear of sickness. Even though she does go to school we do limit her whereabouts. Still no malls, crowded stores, church, etc. That, in time, will come.
In March we were invited to ski in Vermont with friends. Although Emma did not venture out onto the slopes (maybe next year), she loved being pulled in the sled by her Dad and watching her siblings race down the mountain. I think she just loves being part of the gang and it feels so good to have her included. She enjoyed playing lots and lots of board games (Monopoly being her favorite) and card games galore.
With spring in the air, and a healthy girl we are taking a trip down to sunny Florida for spring break. The kids are just filled with excitement (so are Mom and Dad). Just the idea of the warm weather…
Okay, now with the medical stuff…
We had an action packed visit down at Duke. I swear, each time we go down there they take more and more blood. It seems that when we left Connecticut on Sunday, someone turned Emma’s “on” button on and she was in overdrive mode the entire time. A little bit fresh and showing off for all the doctors and nurses, her Mom was a bit horrified but everyone else enjoyed the show. Anyway, with each trip Emma feels more and more comfortable with the whole process. She is used to all the tests and although doesn’t love them she is very accepting and cooperative. Her chest x-ray - normal, PFT - normal (she actually cooperated this time and told the 2 technicians to put their seatbelts on because she was going to blow them away!), her echo shows signs of the walls of her heart thickening but no change within the past year. They do believe this is due to the medications and will resolve itself when we get her off. Her CT scan of the brain and the spine looked stable and shows no evidence of the disease progressing – again no change from the past year.
On to Tuesday with Dr. Escolar and some developmental testing. Believe it or not, this is Emma’s favorite part of the trip. We were there from 8:30 until 2:00 with evaluations in speech and language, PT, OT, cognitive skills and hearing. Although we do not have the official findings back yet, Emma is age appropriate in all areas and above in several. Later that afternoon was our meeting with Dr. K. It is always the highlight of the trip for me – as I have said before, I hang on every word the woman says. She is extremely pleased with Emma’s progress. Our only issue at the time is the ever present, ever annoying skin GVHD. Although she looked pretty good for Dr. K, the rash is still there and the weaning of the steroid has not been very successful. We are going to try her on a new IV med to attack these cells. Dr. K and Sue (our wonderful nurse practitioner) promise me it’s just a matter of time and the cells will eventually die out (I’ve heard this before!). In the meantime, creams ointments and IV meds!!! Because of the skin issues, Emma’s hair isn’t all that full and is slowly falling out yet again. Her bows are getting bigger and bigger and soon will be taking over her head. It’s amazing what a giant bow can cover. Due to the fact that she is still on steroids, Emma hasn’t really grown very much. But the good news is that her head size has not grown either!
Emma’s eyes remain the same. She has mild corneal clouding and has not gotten any better or any worse since transplant. She continues to wear her glasses some of the time, but not always. She is borderline nearsighted.
Emma remains 100 percent donor cells with a normal enzyme level. Music to our ears! We have yet to receive her immune function studies, but don’t expect too much in that department due to the fact that she is still on immuno suppressant drugs. All in all, our visit was very encouraging.
As most of you know I am not very good about updating Emma’s webpage. But I do feel an obligation to all of you wonderful people who have cared about our girl. I also hope that in some way Emma’s story is an inspiration to new MPS families and offers some hope for their children.
Until next time (who knows when that will be) we continue to think of all the wonderful families and children we have met along the way. You will forever be in our thoughts and prayers. Jack and I continue to be grateful and ever so hopeful for our Emma. She makes us smile and keeps us in check for what is truly important in life.
Much Love,
Liza
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Farmington, CT 06032
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