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Madison Smith's Website - Viewing Journal - Tuesday, February 24, 2009 4:25 PM
Thank you for taking time to inquire about Madison and how she is doing. Madison was diagnosed with high risk T-cell Acute Lymphocytic Leukemia on September 24, 2003 at Duke Hospital in North Carolina. She had just turned three at that time. Leukemia is a blood cancer that is not believed by medical professionals to be inherited at this time. She presented with a mass in her chest that encompassed the majority of the upper half of her chest area. The mass was related to the leukemia. It collapsed her left lung and a portion of her right lung and was shutting off the blood flow from her heart to the rest of her body. She was in the pediatric intensive care unit for almost two weeks on a ventilator. We weren't sure then if we would ever have a chance to fight the leukemia. Madi is a true fighter and pulled through! After getting off the vent, Madison was able to achieve remission by the 28th day of treatment. She underwent two and half years of aggressive chemotherapy (protocol 1961) and radiation for the mass. On Christmas Eve 2005, a little over two years after her diagnosis Madison had a chest CT done that revealed that the mass was finally gone! Madison finished her treatment in January 2006. Children that have cancer are not considered "cured" until they have been off treatment with no-reoccurrence for five years. Duke has followed Madison throughout her treatment. She will continue to be followed by Duke. In April 2008 Duke uncovered that Madison has an obstruction in 3 of her veins. The veins involved are the Left innominate vein, the left (lower) internal jugular vein, and her sub-clavian vein. These veins are responsible for carrying her blood back to her heart and hers are 100% occluded. What is going on with her right now is likely a result of the mass she had in 2003. There aren't really any easy fixes for what is going on with her and no real cases that it can be compared to. We are working with Duke in an effort to resolve this issue. In February 2011, Madi moved from in-remission to "CURED" from her disease We've come this far for a reason! Please continue to lift all of us up. The care and concern that we have felt from all of you continues to be an encouragement to us. Thank you...
 
- Allison

Update - Tuesday, February 24, 2009 4:25 PM


Journal February 24, 2009 10:30

Madi is hanging in there! She went back to school today for a half day. We ended up keeping her home on Monday because she was just wiped out. Today she did pretty good at school but by 11:30 she was wiped out again. She came home and slept for three hours and seemed to be much better when she woke up. Unfortunately, her head is still hurting but it certainly isn't as bad as it was last week prior to being admitted. She has bounced back and forth having a very low grade fever. We aren't sure where it's coming from. She also has spot on the back of her head that is really sore for some reason. We are watching to make sure it's not a bed sore trying to come out. The spot that hurts is in the exact same spot that she had one back when she was initially diagnosed. We really don't think she's been in a laying position long enough to get one, but who knows. We will be going back to the Neurologist on Thursday for follow up. Thanks for your prayers.


Journal February 22, 2009 1:00pm

Madison will be released to go home today from Wake Med. She was admitted on Wednesday evening for severe migraine. She has had bloodwork and it was all great! Last night they did an MRI/MRV of her head, neck, and chest. For those of you who have been following, they didn't have to use dye and she didn't have to get stuck again!The MRI looked just fine. The MRV had a little narrowing of some of the veins in her head. Clinical comparison of her Duke MRI's will be required to determine if this is something that has changed vs. how it's always been. They are releasing her to take it easy. They said that we could see some up and down effects from the medicines that she's received while inpatient. Specifically, headache and fatigue. They think that the headaches should be significantly better but it is usually over a period of time that could be as long as a couple weeks. As for school tomorrow, we will wait and see if she appears to be feeling good tomorrow morning. At the very most, they will allow her to go half days next week, if she's up to it. They are adding Topamax as another headache preventative medicine to the one she already takes. We will be monitoring her for side effects from this drug. Thank you for your concern and prayers.

Journal

February 17, 2009
10:00 pm

Sorry it’s been so long since last update. We’ve been busy on the trail of “hurry up and wait”, which seems to be the reoccurring theme of our lives…So rather than rambling, I try to wait to post until I have something to report.

We have been awaiting her sleep study results. They are in, and the test was positive for “Mixed Apnea” which is a combination of both Obstructive and Central apnea. Apnea is defined as no breathe for more than 15 seconds. Obstructive apnea is when the brain sends the signal to breathe but when the person tries it’s obstructed for some reason. Central apnea is when the brain doesn’t send the signal to breathe, so the person doesn’t and apnea occurs.

Madi’s test was also positive for a “Hypoventilation”. In clear terms it means that she had too much Co2 in her system.

This week on Monday Madison was seen by her Neurologist. His overall feelings on the sleep study were that the way the report was written left a lot to be desired and more questions. He felt like it might add value to have the study repeated and UNC Hospital and to add an additional study to it called MSLT. For the MSLT study they take the entire next day after the sleep study and have the patient take naps several times through out the day. If the person is able to achieve REM sleep during those naps, it causes greater concern. We aren’t sure yet whether or not we will do the study again.

Madison actually had a migraine while we were at her Neurology appointment and we had to give her the rescue medicine. She was feeling so bad when we arrived that she actually crawled up on the table and went to sleep. I’ve actually never her seen her do that before! The Neurologist further feels that it’s time to go ahead and get an MRI-V of chest, neck, & head. He is getting with Hem-Onc to get this scheduled at Duke. He specifically wants to see if she has any blockages in her head. Since we know that she has them in her chest he wanted to go ahead and shoot the neck while he was in there. If there are any in her head, he wants to know exactly where they start and stop. He doesn’t want to go a back in later and order another test that will expose her to more radiation. Seemed like a pretty good idea to me. I like this Neurologist. He’s at Raleigh Neurology and we’ve had a great experience there. (Every Time)

We went to the Pulmonologist today and really don’t know too much more than we did before. His feelings were that the “Mixed apnea” on the sleep study was something that we could watch. He further wasn’t completely convinced that the Co2 levels that were elevated for 100% of the study weren’t due to a false reading or faulty equipment. We were there for more than four hours today. She did all their pulmonary function testing as we do each time we go and we had the same abnormal numbers that we’ve had the last five times. By the time he got to us, the lab was closed and couldn’t do an independent read of her Co2. He said they’d do it next time….. (Rather frustrating!)However, my neighbor is a Paramedic so we had him come over and do the test. The results of that reading were above the normal range in line with Duke’s reading. He is going to check it several times over the next couple of weeks. We’ll just have to wait and see where this takes us.

Today they prescribed her an inhaled steroid that she is supposed to take twice a day. They hope to see improvement in her function testing next time we go. They are still calling her issue “Small Airway Disease”. Madi is scheduled to go back to Pulmonary on March 31st.

Unfortunately, Madi’s migraine from Monday has been constant. The rescue medicine was too little, too late. Tonight we had to give her “Toradol.” Hopefully, tomorrow she will awake free from headache.

We keep waiting for some big answer to all these questions, but they really aren’t coming. So I guess until we come up with plan B, we will continue on the path we’re on. If anyone has suggestions, we’re certainly open to hearing them.

Please continue to pray for Madi

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