 Update - Friday, June 26, 2009 5:26 PM
Journal June 26, 2009
Madi completed her sweat test as planned today. Although, this test doesn't really hurt, today, she was pretty scared. I think she was scared because it was unfamiliar ground for her. The results confirmed that she DOES NOT have Cystic Fibrosis. CF is genetic. Once you test positve, it will always be positive. Likewise, if you test negative, you will always be negative. She will never have to do this again! This is a true answer to our prayers! Other than the test, today has been a good day. Her energy has been better today than it has been the last several days. She has also coughed less today. It seems that the new meds that we started yesterday are already working for her. Perhaps we just needed the "right" antibiotic and steroids. Thank you for your prayers. As always, we feel very blessed. I'm also very thankful, that this time she's caught a break! She deserves a break! We'll update soon.
Journal June 25, 2009
Last Friday, Madison was diagnosed with pneumonia. Today she was seen by the chief pediatric pulmonologist at Johns Hopkins in Baltimore. Her pneumonia has still not cleared up after two antibiotics. They have started a third one today. She has a lot of stuff in the lower right quadraint of her lung. She hasn't had a fever now for several days.
Today she was diagnosed with Obstructive Airway Disease. They want to evaluate her for Cystic Fibrosis. She has a Sweat Test tomorrow at Johns Hopkins at 10:30. We've been told that we will have her results of that test by 3:00pm tomorrow afternoon.
Sometime over the next couple of weeks a bronchoscopy will also be done. We are presently unsure if we will have that done at Johns Hopkins or Duke. The results of the Sweat test will likely by the deciding factor.
Please be in prayer for Madi and our family.
Journal June 20, 2009
Madi had a wonderful time at camp! Thank you to all of you who sent letters and cards to her while she was there. She really enjoyed them! We picked her up on Friday morning for which physically she seemed spent, but okay for Madi. By that evening though, she spiked a fever of 103 and got a severe migraine. Duke felt it was necessary for her to be evaluated. They wanted to do blood work and a chest X-Ray at a minimum.
Her blood work gave us a bit of a scare because her white count was over 17,000! That is not a number we want to see with her history of Leukemia. Thankfully, depending on how you look at it, she has Pneumonia in the lower lobe of her right lung. They feel that her white count is elevated for that reason and not because of any new Leukemic activity. We left Duke about 3am this morning. She is now on another round of antibiotics and we have to do breathing treatments every four hours around the clock. If she is not better in 3 or 4 days or her fever lingers more than 48 hours, we’ll have to go back.
Thanks for keeping her in your prayers!
Journal
June 19, 2009
No excuse for not updating lately. Just like everyone else, life is busy! EOG’S are over, school is out and the summer is already in full swing.
Since last update, we’ve had some challenges but overall, Madi is doing pretty good. About a month ago, Madi started having some more lung issues. She has an odd, congested cough (like bronchitis) with no other symptoms. As a result, she has been requiring breathing treatments. She was given three new meds almost two weeks ago that have held everything together to the point that she hasn’t needed multiple treatments through out the night since last Friday. However, the cough and congestion seem to be the same. Weird????
She has spent the week at camp. This year she went to Victory Junction. This is a camp that is the mastermind of Kyle & Patty Petty that is specifically for children that have issues medically that would prevent them from going to a normal traditional camp. The camp is an amazing place where children enjoy bowling, swimming, horseback riding, challenge courses, crafts, movies and much, much, more. The camp is staffed with Dr’s and nurses so moms like me feel very comfortable. This week has been “Cancer Week”. The only children there either currently have cancer or have had the disease. Madi was very, very, excited about going. We were excited for her to be around other children that totally get where she’s been. There is such comfort to the human spirit knowing you’re not alone.
Because of her new need for breathing treatments, I wasn’t feeling real good about sending her. Even though I knew that they could handle it, I was feeling bad that someone would have to get up with her at 2am and do another treatment. You know, moms do it because we love our children but we still don’t enjoy it. I was just thinking a dis-interested 3rd party might find the chore a tad inconvenient!
We’ve spoke to the nurse once this week. Other than needing the breathing treatments, she had one migraine. Her normal migraine rescue medicine didn’t work, so they gave her a narcotic pain medicine that we use only after nothing else works. This left her a little fatigued but they were able to get the headache back to a manageable level. So overall, I would say that it was a great week! We will pick her up in a few minutes.
Madi has an appointment next Thursday with the chief pulmonologist (lung doc) at Johns Hopkins in Baltimore, MD. We consulted her earlier in the year and planned to take her this summer to see her. Apparently, this doctor has a very limited schedule this summer and next week was actually the only date this whole summer that they could see Madi.
The Sampson County Relay was two weeks ago and in spite of a little rain, I think it was a success…. Madi’s shirt that she designed really turned out beautifully. We were very happy with them! Also the fundraiser for the Leukemia & Lymphoma Society also ended about that time. I mentored Taylor Faircloth this year for her senior project on Leukemia. She ran as the honorary youth candidate for Woman of the Year through LLS as well. I am proud to say that her campaign raised almost nine thousand dollars! This was in a down economy and I think a remarkable total. I find it especially remarkable considering she’s only 17 years old! Needless, to say, Taylor also did a remarkable job on her project scoring 100% on each of the three area’s in which she was graded on. I would like to personally thank all of you that contributed to her campaign by donating money and auction items to The Leukemia & Lymphoma Society. LLS, Taylor, & myself all very much appreciate your support and we could not have done it without you!
We hope all of you will have an absolutely wonderful summer! Enjoy all the ones you love! We will update again sometime after Johns Hopkins.
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