Hannah received her new bone marrow Thursday June 25th. Thank you unknown donor! May God bless you with lifelong health. Send cards or pictures to Hannah for her wall at:
65 Tallman Ave
On December 18, 2005, Hannah complained of knee pain. I thought she may have hurt herself the night before at her sisters 13th birthday party. She was running around with the big kids. She never complains and tries to keep up so it was not unusal for her not to tell us that she was hurt. By that late afternoon she refused to walk. We took her to the ER and she had Xrays. They sent us to Hasbro as they thought she had Septic joint and her Seg rate was high. We stayed over night and then went home. They thought she had toxic sinivitis. She had a cold a couple of weeks before and they thought it settled in her knee.
She started to feel better and then a week later she fell off her stool washing her hands and would not walk, back to the ER on Christmas. They thought she was just scared because of what had happened before and she was faking but she did have an ear infection. Her pediatrician was on vacation so we went to the oncall a few days later. She sent us to get Xrays- they came back and she started to feel better.
Her doctor came back and I just wanted him to look at her because she still had a slight limp. That was Jan.4,2006. Then she stopped limping and returned to preschool on Jan. 5, and I went back to work. Then the world went backwards and ceased to make sense. My grandmother died that day and I was at the funeral home making the arrangements when the nurse called and asked me to bring Hannah in for the test results. I knew something was wrong because they usually tell you over the phone. I thought it was septic joint and I was worried she might to have a needle in her hip, how I wish. Thank goodness my parents were there and we picked up Hannah from school. Her doctor said it was Leukemia and we have to get her to Hasbro right away... they were waiting for her. All I can remember saying over and over is NOT MY BABY!!!!!
I was dropped off to pack for the hospital while they picked up her sister from school. I had a few minutes to prepare Cynthia that her great grandmother died and that her sister was very sick and that she needed to stay with her grandparents for a week (which turned into a month).
We went to the hospital and they began telling us that they were positive but she needed to have a spinal and a bone marrow aspiration to find out which type. They would do it in the morning. Everything moved so fast. They had lots of information and then we found out it was A.L.L. They explained the different parts of the protocol and that next Monday they would put a port in her chest that would be for her medicines. She would start chemo that day. She had a ton of chemo and many blood transfussions and platelet transfusions. It seemed that she was getting medicine around the clock. They were teaching us about all the medicines to go home after 2 weeks.
Just as we were about to go home she had developed a fever and had to stay so she could be infused with antibiotics. Because fevers are life threatening, any time she has a fever we need to get her to the hospital within an hour and we live an hour from the hospital. I cried pretty much the entire month telling Hannah I had belly aches. She would try to make me feel better by saying "I love you all day, Mommy"
Then one day she said "Mommy cry, mommy sad, mommy worry about me"- only 2 years old! I had to pull it together and did not cry in front of her any more.
She had always been tiny and she weighed 29 pounds when we went to the hospital and by the time we went home she weighed 42 pounds, her skin stretched so much it looked plastic and looked like she was uncomfortable. She could not walk that much. Her muscles were weak and she had gained so much within a couple of weeks. She needed to be carried and pushed in the stroller and her moods were very up and down and emotional.
She was on steriods for the entire month and would continue throughout the entire 3!!!!!!!! years of treatment in different amounts, at the least 5 days a month. She would get so hungry wake up at 2 am in the hospital screaming and crying for bacon and clam cakes and pepperoni. She would cry and said that her eyes were not right. She had seen more doctors because her eye would just about close and she could not control it. She had many more transfussions and her counts were down and her ANC would bottom out to nothing.
We went home and had to get used to a new life. I was on leave and she could not go back to preschool, it was to dangerous. We had a visiting nurse and back to the clinic at least once or twice a week. Then at the end of February I told the visiting nurse that if she had a limited time that I thought we would be ok until she had to be accessed at home later in March. Well on March 4, two days after she had her 10th surgery to put the chemo in her spine and brain, she had seizures, petite and grandmal.