January 15, 2000

Jordan has had 5 IV Solumdedrol treatments to date. She has been a very brave little girl. We are so very proud of our baby. She's not used Emla and shown little fear. I don't know how a child so young can be so courageous.

Yesterday we saw Dr. C. Her lab work looks better even though is was taken prior to the IV treatments. The extra methotrexate seemed to make an impact. This news was good to hear, yet we were given some that worries us. He tested her strength and felt she was so-what stronger than last month, but must take physical therapy twice a week. Her rash has not improved, so he prescribe Plaquenil. It was our understanding that Plaquenil affects the eyes and Jordan already has Cataracts in both eyes. Dr. C instructed us to take her to a Opthalmologist to have a Plaquenil base line test. We took her today. Dr. S was very friendly. He checked her vision very well. He said her sight was very good for someone who had been on Prednisone for the length of time she had. He informed me that it is very very rare for Plaquenil to cause problems. He has never seen a case to date. I was so relieved to hear that. Jordan will return for a followup within 6 months. She will see Dr. C in 4 weeks. I pray that the lab results return to normal.

Its been a tough week for all of us. My husband seems to be having an especially hard time. I feel I'm partly to blame. I have put off going to the doctor myself. I noticed a growth on my throat about 2 months ago. I was hoping it would just go away, but it hasn't. My mother noticed it about a month ago and begged my to see a doctor. At the time, we had just been informed that Jordan was to begin the new treatments. I just didnt feel right about going to check out myself. Well, Joe informed me that he had made an appointment for me this past Friday. I went and my family physcian is concerned. He prescribed some lab work as well as a Thyroid scan and ultra-sound. I'm to have one tomorrow and the other on Thursday. Because I don't have any symptoms of Thyroid problems,like weight loss or gain, etc., he wants to rule out cancer. Naturally, we checked out the internet for information and what we found doesn't look good. The worst case senerio is the mortality rate of Thyroid cancer, that affects my age group, is 10 years. The best case senerio is a benign Goiter. I read that if its visible to family and friends, it probably needs to be removed. Either way, its caused a headache that my husband cant get rid of.

I personally am not concerned but it bothers me that it will cause a toll on my family. My girls don't know anything about the tests yet. They know I have the growth, but we haven't discussed it with them. Neither need any added stress. My son knows and has shown concern by calling and wanting to know how I feel. I havent told any other family members yet and I hope they dont read this before Friday. All the results of the test will be in by then and hopefully, it will good news.

I almost forgot to mention, two additional lab tests were done on Jordan. The von Willebrand Factor and a Neopterin Serum both came back normal. Ed at the JDMS registry had asked me if Dr. C had requested those last month. I knew he had and am glad to hear they are normal!

On a lighter note, my girls were surprised with a stuffed teddy bear for Valentines. Their thoughtful Daddy selected the cutest red and white bears that have 2000 on one paw. He chose Barbie valentine cards. He said he liked it so much, he had to buy them both the same card. He never forgets his girls or son on Valentines. For that matter, me either. I got a box of candy and a teddy bear too. He's such a sweetheart.

God blessed me with a wonderful husband and three loving children. I have faith that God will be with us. He has given us the strength to endure JDMS and I'm sure he will continue to watch over us. I pray that he will also bless Jordan, Jennifer and Joey with a wonderful life.

February 23

Today Jordan went to the physical therapy clinic to be evaluated. She will begin therapy on Friday. Hopefully we can take her on Wednesdays and Fridays after school. She is physcially capable of doing almost everything she wants, but has very tight hamstrings. She told me today that she thought her back muscles were tight also. The therapy will be mainly stretching, as she is capable of riding a bike, swimming and running. We are hoping she will need on the 4 weeks of therapy recommended by Dr. C. We'll have to wait and see.

I requested that she not be given so much homework, as she is already so tired when she get home. With therapy twice a week and IV treatments once a week, she has a full schedule. The school is going to work with us and watch to see if additional assistance is necessary. So far, she is capable of fulfilling the school day without problems. We pray that she can keep this pace up.

I got the results back on my tests and thanks to God and your prayers, it's only a goiter. I have an appointment next week to see a specialist to have a radiation treatment. Its suppose to be a one time event and I'll be required to take a thyroid medication the rest of my life. I'm relieved that its not anything worse. I'm so glad that my family won't have to deal with another medical crisis.

Please continue to pray for those affected by JDMS and for a cure. I know pray works!

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