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.
January 1, 2013 9:52pmHi My Friends,
Thank you so very much for the PRAYERS, kind words and support! They really mean so much!! I wish we could hug each one of you! Happy New Year! We wish you all a HEALTHY and Happy Year!
First I will update with yesterdays appointment with the GI liver specailist then I will fill you in about what has been going on since the last update. Sorry in advance for the rambling!!!! It was a long appointment. He was going over all her labs, xrays and ultra sound and her history and asking us questions. Hannah liked that he was asking her questions before me. He decided after reviewing everything that he wasn't going to make her take tests because she did them this month and he wanted to see if they change by April. So we will go back then. What he concluded from all the results at this point was that Hannah has Hepatitis but not the A,B,C, type. It is the inflammation liver disease kind. Which if I understood correctly can be reversed at this point but he will know more in April with the follow up tests. He also looked at her xrays and said that she is backed up with poop and he showed us, so now he doubled her miralax to two times a day. He also said that was not causing her vomiting. He said she has cyclic vomiting syndrome (CVS). There are several ways to treat it and because to treat it prophylactic the medication is like steroids he does not want to do that. He wants her to take zofran as soon as she feel nauseous or after the first episode. Hopefully that will stop her from getting more episodes. If not she may have to take the other med. It is like a migraine in her stomach. This is something she could outgrow, it is not common but not that rare, he has known a few children and some adults that have it.
Now to catch you up! Sorry about lack of updates. My new years resolution is to get our computer fixed. Auntie Sheila said she may know a site to bring it back to factory issue state, but first I need to get our pictures and Hannah's games off any suggestions out there?
Well on the 7th we went to Boston! What a long day we did not get home until after 7. Mamma was such a sport being in pain but wanted to go. Hannah's liver functions were high so Melissa did the liver coagulation which also came out high (hepatitis liver disease) . Her other numbers were a little off too but not enough to worry about. Her platelets were good! (PRAISE GOD!) Melissa could tell from her blood work that Hannah has not been drinking enough. It has been a major struggle since transplant to get her to drink. Anyone have any suggestions they would be appreciated!!
On the 18th, Cynthia's birthday, Hannah was in the Christmas Pageant! It was beautiful! She was ancient Mary! She carried baby Jesus (A doll) and then half way through the older children come and relieved the younger cast. It was beautiful! Happy tears! It was such an amazing night! If you missed it mark your calendar for next year! I will try to get a picture of her on here. Hannah had a great report card! She was student of the month and she received a high achievement award! Cynthia did great at school too! Yea! I am so proud of my girls!
Christmas was wonderful! Everyone was home! The girls just loved Santa's presents. The only thing that could have made it better was Mamma feeling better. She had to lie in bed except to eat because she was in pain. She had spent all of Saturday in the ER to get better but no luck. Her knee pain made her back hurt and then her sciatica acted up! UGH! Prayers for healing please!
Cynthia has had a bad cough and cold but since she has antibiotics she is better! It has been difficult keeping the girls away from each other so Hannah won't get sick, they just love each other! I am so blessed!
Please, Please, Please continue to pray for Hannah as all these new issues keep us on our toes! Thank you all so very much for everything we are truly blessed that you all are in our lives! Hannah has her neurology appointment on the 15th to see about the headaches and make sure nothing else is going on more serious. She is also going to the dermatologist on the 16th for a recheck and get her brovaic site cauterized. We are still waiting for the urology appointment. Prayers for great results please!
Thank you all so very much! I know I am forgetting things but I had a lot to say and I hope to update soon!
Please continue to pray for our friend David that he handles treatment well and he is cured! Our neighbor Henry could use some prayers, we just found out he has bladder cancer and is in the hospital with fever, the flu and pneumonia! Please pray for these wonderful people! Thank you so very much!
I know I ask a lot of you all but I know He hears you all! We are so blessed to have the best prayer team! Thank you! Love and Blessings sent your way!
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