5 May 1999
7:00 PM EST
Well, this will be a rather long message, but thereís a lot of information to share.
The entire family drove down to Johns Hopkins in Baltimore on Sunday April 18'th for the week. At this time, Megan met with her transplant doctors so they could review the progress on her bodyís acceptance of the liver. Mark also met with his doctors to review how he is doing with 40% less of his liver.
Megan continues to be immuno-suppressed. Although this allows her body to more readily accept the transplant, it makes her susceptible to any virus and infection. As long as Megan continues to be immuno-suppressed, the mildest infection or virus could very easily become fatal. So, the doctors made adjustments to the anti-rejection drugs to try to balance out her bodyís response to the transplant as well as her ability to protect itself. Medicate the body to accept the liver transplant,....and open up the risk of fatal complications from the common cold!! Not an easy battle these doctors have had to deal with. Then, there are the chemo treatments (which are over for now), and the medications being used to help prevent the re-occurrence of the cancer.
The week in Baltimore resulted in Megan receiving rather high rankings on her liver functions. But, the prognosis is "cautious" at best for the next 2-3 months. Anything and everything could happen. There is a great concern for the potential development of Lymphoma due to Epstein-Barr factors. This could cause the rapid development of white blood cells which could attack the lymph nodes and the liver.
Megan was back at Hasbro clinic on April 28'th for her 5'th and final medication and drip (CMV) and also had to deal with getting X-rays taken of her foot. She was favoring one foot over the other, and this needed to be checked out in detail to make sure there was no infection or other problem. I am told that Megan had extensive conversations with the X-ray technicians and radiologists about the potential for there to be "cooties" between her toes, and how they needed to be X-rayed. Needless to say, Megan continues to claim that she has "No cooties between my toes!" and has since begun to wear sneakers which light up when she walks to ward-off cooties looking for a place to rest.
The regimen for the next few months will require a once-a-week visit to the Hasbro clinic for check-up and review. And, immediate admission to the Hospital at the slightest detection of fever or illness. Theyíll also have to return to Johns Hopkins in July for another major medical review and check-up.This is it for the medical updates,..... now for some personal comments.
A few months ago, I received a card from Mrs. Ratiganís elementary school class at the Fr. John V. Doyle school in Coventry. This class got together and created a prayer group at which they said over 650 prayers for Megan. They made a card for me to deliver to Megan and her family about the prayers they had said, and expressing best wishes for Megan and her family. I delivered the card to Mark, Nancy and Megan a while back, and I know they were overwhelmed by the thought of a classroom of 10 year olds whom they had never met, taking it upon themselves to say all of these prayers for Megan, someone the students had never met.
At the request of Mark & Nancy, I made a trip to Mrs. Ratiganís class on April 29'th. I told these students how much their prayers had helped Megan and proceeded to answer all of their questions about what it was like for Megan to have cancer, have a transplant, endure all of the medical treatments and to have to spend so much time away from home in a hospital. They wanted to know about Meganís family, her brother and her sister, her Mom & Dad. They asked a lot of questions, and began to tell me stories about similar instances in their lives. Here I was talking to a classroom of 10 year old students, and they had all had experiences with critical illnesses themselves. Maybe this is why they knew how important the power of prayer is.
I gave them a picture of Megan which she had signed, and also gave them each a Megan Button. I told them how grateful Meganís family was for their prayers, and how their prayers and the prayers of countless thousands had been answered.
As my meeting with these wonderful students was coming to a close, I felt that there was something more which needed to be said. I felt like they deserved something more for their efforts, something more for their caring and love. I paused for a moment, and realized that prayers, love and caring for others are rewards unto themselves. This class wasnít looking for anything in return, they prayed because they cared. They prayed because they already knew (at their young age) what it was like to feel the pain of illness in a loved one. They prayed because they heard about a little girl who desperately need their prayers. Such selflessness serves as a lesson for all of us. The only thing I could say to them was "Thank You". And for the first time, I realized just how precious each "Thank You" said by Mark or Nancy or Megan really is. I have said "Thank You" many times in my life, but it never felt so precious as when I said it to this class. They say that you go to school to learn. My morning trip to a small elementary school in Coventry certainly taught me a few lessons. "Thank You" Mrs. Ratigan and all the wonderful students in your class....and more!
The other night, Mark, Megan, Kelsey, Auntie Sheila (the chicken dance nut) and I, all went to the final rehearsal for the concert being given by the East Providence Community Chorus on Friday May 7'th with proceeds being donated to the Megan Hayward Fund. We sat in the East Providence High School auditorium listening to a full stage of 140 every-day normal people singing their hearts out. These individuals donate their time a few nights a week all year long to celebrate life in song. And in a few nights, they will share their songs to benefit Megan. When Megan was introduced, the entire chorus cried "Hi Megan!" and Megan shyly clung to her fatherís arm. But as the chorus continued with their rehearsal, Megan had fun listening to the songs, prancing around with her sister Kelsey, or playing with the flowers which were being used as a prop by one of the singers.
The woman who used the flowers as a prop, used them in a wedding song. As we all listened to the wedding song, I wondered if someday Megan would get to hold similar flowers in her own wedding. I hope that someday, this little 3 year old girl with the "flashing light" sneakers and artificial wedding flowers will find herself fortunate enough to experience the real thing. Maybe years from now, if our prayers hold true, I might have the opportunity to wear a pair of "flashing light" sneakers at Meganís wedding! (It would be much better than having to participate in another "chicken dance"). But, all things considered, I think all of us would do almost anything to see Megan grow up and live a happy and successful life.
Hereís my "Thank You" to the East Providence Community Chorus. You reach out and touch people with your songs. On May 7'th youíll reach out and touch Megan as well. We might not be able to remember all of the words, but we will never forget the melody!...thatís all.
Sometimes I get "long-winded" in telling you about some of the things which are going on in Meganís life and those around her. I donít just want to tell you medical stuff, and it is hard to tell you about Megan without telling some of the personal things which I have experienced while with her and her family. We all have our hectic lives to deal with, personal concerns,..... but there is something about being in the presence of Megan or Kelsey or anyone in the Hayward family and circle of friends which makes life seem so much more precious. I never attempt to minimize the criticalness of Meganís illness. But I feel that as long as there is the opportunity, I should also let you know about the funniness, the laughter, the joking, the crazy stories, the tickling, the giggles, the smiles, the funny outfits, those "big eyes", the "flashing light" sneakers, and oh yes,..... the cooties! In spite of everything which has happened, Megan continues to smile and laugh. So, Iíll continue to tell you about the "funny" things. Megan has given us all so much to be thankful for. A little giggle or two now and then couldnít hurt. It works for Megan!On behalf of Megan and her family
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