 Update - Saturday, January 26, 2008 9:47 PM
January 26, 2008
Journal
Well we have had a lot going on since last update. We’ve had a slight scare in December and have more recently noticed some positive changes in some things that have been going on with Madison. Last update we reported that Madison had been falling excessively and having chronic headaches. Because of her history combined with her worsening symptoms back in September Duke did an MRI of her brain just for good measure. The MRI only revealed a few changes (white spots) commonly found in people who have had a drug called Methotrexate excessively. There wasn’t any concern with it. However, it also didn’t shed any light as to why Madi was experiencing the problems that she was. They referred us to Neurology. The first appointment they had was in November which was eight weeks away.
We finally got to our appointment for which that physician found Madi to be absent any reflexes in her arms and legs. He further concluded that he felt as though she was having severe neuropathy as a late effect from a drug she took called Vincristine. This made sense to me while I was there because she did have a lot of problems with that particular drug while she was on it. But…then I got home and starting researching his theory. I couldn’t find anything anywhere about any documented cases of kids two years post treatment to have experienced these kind of symptoms from that drug. The oncology team at Duke that treats kids all the time with that drug hadn’t seen anyone this far out from treatment have the problems Madi was having. Further, Eli Lily makes the drug and I couldn’t find anything regarding the problem with them either.
So to make a long story short I e-mailed the Neurologist to share my concerns and re-question if he really thought that was what it was. I wanted to know what we were going do about it. I wanted to know if there was anything we could do. I wanted to know if it was going to get worse. I was curious if he really thought that his theory could really be why her head was hurting too. So he brought Madi back to do a Nerve Conduction Study and an EMG Study. One shocks the nerves to measure the amount of damage and the other they stick needles in muscles to do the same. He said “we’ll go ahead and measure just how much damage she has, this way we’ll know and will have something to base it from if it gets worse.”
Well, she did the painful test in the beginning of December and to the Dr’s surprise she had absolutely no damage to either her nerves or muscles. This meant his theory was not what was going on with Madi. In the meantime Madi had shortness of breath and chest pain during mild activity with her physical therapist. They had to stop. Duke then ordered a chest X-Ray which was fine. At that point, Duke had done blood work and it was fine, they had done a brain MRI and it was fine and now a nerve study and EMG study which was also fine but her symptoms still persisted. Madi’s oncology team called and said that they wanted to do a Spinal Tap on Madi to check for Central Nervous System relapse. They said that they were cautious when I asked them if they were scared. I ask if it could be there with no other evidence of the disease in her peripheral blood and I was told yes.
We went in on December 9, 2007 for her spinal tap. Madi woke up that day with a severe headache and started vomiting at 5 am. She vomited that day for more than twelve hours. She had three spinal taps that day because the first two didn’t go so well.
We HAD to sedate her. She is allergic to almost all sedation and went through two and half years of treatment and painful procedures without sedation. We tried a drug she hadn’t had this time and it worked without problems! Praise God, the spinal tap revealed no cancer cells, she hadn’t relapsed. Being at Duke that day may have been one of the very worst days we’ve ever had there. She was so sick, so pitiful, and was in so much pain. Prior to arriving at Duke that day I felt some what afraid of the “What if it’s back” question in my heart although, I wasn’t convinced that it was. In the past, I’ve always been the strong mom Madi needed while we were up there. That strength isn’t me but only explained by God. That day though, I wasn’t strong at all. After the two spinal taps had gone bad when the doctor’s and nurses walked out to figure out plan B I sat right there and cried right along with Madi. Even the nurses cried that day. They are the same nurses Madi has had all these years and they truly care
Madi had a routine echo-cardiogram in November that reminded us that she has a whole in her heart. It’s called a Paten Foramen Ovale (PFO). About 25% of American have this. In most cases, a baby’s hole closes. We have an appointment with a cardiologist that specializes in PFO’S on February 27th. Apparently a PFO can cause headaches, fatigue, and shortness of breath. I will report back how that goes. There is a procedure to close it, we don’t know yet if that will be recommended.
We have had all of Madi’s records shared with St. Jude Children’s Hospital in hopes they have seen symptoms like hers in other children. St. Jude treats more kids for cancer than any other facility in the US. The falling, and no reflexes in arms and legs yet zero measurable nerve damage wouldn’t be linked to a PFO. We should hear back with their final conclusions within the next week or two. Duke has been good but they are fresh out of idea’s of why those things are happening. We are still very pleased with them. We have to remember that Doctor’s practice medicine and they don’t always know everything, they are human. We love our team at Duke and are very thankful for them. When kids look forward to going to see them despite the fact that they know they’re going to go through horrific procedures while they’re there, you know their awesome people!!!!
Madison’s headaches have pretty much persisted but her falling has decreased significantly. She is taking physical therapy three times per week and it appears to be helping her tremendously.
Please continue to lift Madi up. We’re coming to terms with the fact that these side effects are likely just the price we have to pay for her to be alive today. The very same drugs that saved her life are very much the likely culprit of the things she faces daily and will continue to face as she gets older. Although, it’s not what we want for her, it’s a small price to pay for life. Even knowing the things we know now, we still wouldn’t have changed the treatment that she had.
Sorry for the long update but you are now completely up to speed!
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