Madeline Gorman was born November 30, 2006. On October 29, 2007 we received the news that a blood test had shown some very weird results and by the next day, it appeared that she had leukemia. We moved from Jacksonville, NC to Charlotte NC for treatment and she has been receiving chemotherapy since having her Port inserted November 2, 2007.
Her cancer is called Infant Acute Lymphoblastic Leukemia (ALL). Her type of leukemia has a worse prognosis than does leukemia in older kids specifically because of the chromosomal type she has, which is the MLL translocation t(11;19), which is rare. Different studies give different stats, but she has somewhere between 33% and 60% chance of survival. Like our doctors and many other cancer parents say, stats mean nothing. It is really either 0% or 100%. We choose to believe that there is a reason for her to be here and that she constantly teaches us to value the important things in our lives. We enjoy every minute of every day together. It seems impossible to think that there is still a chance that she could die, given how well she is doing now and how normal she seems. But the reality of the situation is that her cancer can come back. We are so lucky that she has dealt with all of this as well as she has and that she enjoys every day and does not know she is any different than any other child. Every day that she enjoys is precious to us.
No parent could ask for a more perfect child. Ever since birth, our little princess has amazed us in every way. The way that she has handled treatment makes us incredibly proud. She is a happy little girl who is developing normally, except in size, which is normal for a child on chemo. She loves being at the clinic and hospital because of all the people she gets to interact with. She is truly a social butterfly.
Maddie’s favorite things to do are as follows: to play”boo,” a form of peekaboo where she hides from us and then runs back in with her hands raised saying “there” which comes from us saying “there she is”. She loves for us to clap for her; she will look around the room to make sure everyone is clapping. She loves to dance to music of all kinds, but especially to The Wiggles. She loves to play a form of dress up, where anytime she sees something she likes, she wants to put it on and then “wa wa” (walk, walk) with it. So jewelry, purses, shoes, or even just putting something in her pocket….she loves to try out new things by walking with them. Sometimes if any of the adults wear something new, she wants to walk holding our hand to show off the new stuff. She also knows to ask to look in the mirror when she puts on certain clothes or hats, so she can see how pretty she looks. She is a little girl in every way.
I wrote the previous description of her behavior when she was almost two years old (Sept 2008). Not long after her second birthday, Maddie began to have weird eye rolling episodes which seemed like seizure activity. About a month later, full myoclonic seizures began and our amazing little girl was diagnosed with Infantile Spasms. Since then, we have tried numerous medications to control the seizures to no avail. At this time (may 2009) she is having seizures throughout the day and night every day. We will make them stop! The current theory is that some of her chemotherapy caused brain damage and that damage brought on the IS.
To read the journal of our lives from Maddie’s diagnosis through September 2008 when I started this blog, check out her CarePage.
It’s amazing how the littlest ones can be the strongest fighters through all this. thanks for the post on our care page (Lila Kay). we will be thinking of an praying for Maddie.
Hi my name is Dora Richie’s Mom. I was searching the Internet and found you story if your daughter. Richie is 24 yrs and the same happened to him as your daughter. He was diagnosed wit ALL at 3 yrs old and chemo caused him to have seizures. Again at 23 yrs he was diagnosed with Central Nervous system ALL. It came back to the API al fluid. They wanted to do radiation, but I decided not too because he’s already mentally challenged that it would not give him the quality of life that he would want. My prayers and thoughts are with you.
My daughter also has ALL with the Philadelphia Positive chromosomal translocation. She also suffered from seizures as a result of chemo. She’s now on Keppra but Tegretol also worked (unfortunately it negates the meds she must take for the ph+).
It’s so good to read stories of other parents going through something similar!
Thinking of you!