November 30, 2009- Good News / Bad News

We received some good news today. The results of Maddy's Day 15 bone marrow test came back and her blast count was down to 1-2% (the goal was less than 5%). Praise the Lord!

Unfortunately, around 6 PM, Maddy developed a fever. Right now, her immune system is very low. Her body does not have much to fight off any germs. As a result, we are back in the hospital. The doctors now have to figure out what is causing her fever. They are going to start her on some general antibiotics while they do tests and grow cultures to try to figure it out. It takes a minimum of two days to get any results back from the cultures, so we just have to wait and pray that she does not get worse in the meantime.

We feel as if we are on a roller coaster!

November 29, 2009

We're home! The doctors discharged Maddy around 8 PM on Saturday. Her color was better after the blood transfusion and the CT scan did not show any serious issues with Maddy's stomach. We just have to aggressively try to get things "moving" in the right direction- what goes in must come out!

Right now, her blood counts are down as to be expected due to the treatment. Her immune system is VERY low, so we have to be extra careful about germs. We are still waiting on the results of the latest bone marrow test.

November 28, 2009

Just a quick update- Maddy went to the clinic at St. Vs for her chemo treatment and bone marrow test on Friday. She hadn't been feeling really good the past week. She was VERY tired and had bad stomach aches. Her doctor decided to admit her to the hospital. She needed a blood transfusion and they wanted to do some tests to see what was going on with her stomach. From the X-Rays they did on Friday, it looks like more is going into Maddy's belly than is coming out. We are working on this! She just had a CT Scan done this morning and we are waiting to talk to the doctor.

Maddy is ready to go home. We hope she is able to be discharged today.

Happy Thanksgiving

We just want to wish everyone a Happy Thanksgiving! This year, Thanksgiving has taken on a whole new meaning for our family. We recently realized we often took for granted all that we should be thankful for each day. This Thanksgiving, we are not taking anything for granted and are truly thankful for all that we have. One thing we are most thankful for is to have such loving and caring family and friends (and even strangers) who are supporting us through this new journey we are taking. We could not have gotten through the last two weeks without all of you!!! Thank you! Thank you! Thank you!

Maddy, showing off her new short hairdo, was able to love on her new cousin this Thanksgiving. Maddy loves babies!

Day 8 Test Results

We received word today that the blast cells in Maddy's bone marrow are still above the 5%, so she will have to have another bone marrow test on Friday. The doctor said we should not be worried about this, so we will try not to be worried! The important thing is for this percentage to go down between Day 15 and Day 28 of treatment. This is the reason for the extra bone marrow test- so they have a baseline number. We are praying that Maddy's body continues to respond to the treatments. On a lighter note, the steroids that Maddy is taking have kicked into gear. Maddy is eating everything in sight and sometimes has cravings for things we don't have in the house. Right now my wonderful neighbor, Lilli, is out in search of boneless teriyaki wings and curly fries. Did I mention that the steroids make Maddy very impatient and moody too?? : )

We want to wish everyone a Happy Thanksgiving. We hope everyone is able to spend some quality time with family and friends!

Day 8

Maddy went back to St. V's today for a chemo treatment, bone marrow test, and spinal tap. She was very nervous about the nurses accessing her port, but after a little kicking and screaming, she realized it was not so bad. Hopefully, she won't be so anxious the next time. All of the procedures went well. We arrived at the hospital at 10:30 and we were leaving by 2:30. Maddy was hungry for PIZZA, so we stopped on the way home to get her some. We will get the results of the bone marrow test back on Monday. The goal is to have less than 5% blast cells (the leukemia cells) in her bone marrow. If she has more, she will have to have another bone marrow test on Day 15. We are praying that the results come back below 5%, so Maddy can have one less procedure done.

Thanks to everyone for the continuing prayers!

Big Sis

Hi- it's Julia. Just wanted to say thanks to everyone for everything you are doing for my family. Also, I would like to thank my friends for how helpful they have been. It is nice to have people to talk to when I can' t talk to my parents. Maddy loves all the presents and cards that people give her. It helps to know people care about her. Thats all for now.

Thanks again,

Julia

P.S.- Liam- Maddy Patty is just a nickname we have for Maddy. Her middle name is actually Claire. : )

Thank You

Hi Everyone! It's Maddy. Mom said she would help me write a note to all of you. I want to thank everyone for all the wonderful cards, notes, gifts, and most importantly the PRAYERS! I want to come back to school, but I know I can't right now. I miss everyone so much though! Don't worry Miss Heckel- Mom and Dad are still making me do my homework. Thanks for keeping all my stuff in a box for me. I can't believe that Walker pulled out his own tooth. I hope the Tooth Fairy came. I still haven't lost any of my teeth, but some are wiggly. Right now, I am just really tired and my belly hurts. It feels better when I lay down. I have to go back to St. V's hospital on Friday for more tests. I don't want to go and get poked anymore, but Mom and Dad say I have to to get better. (It still doesn't make it any easier.) I'll try to keep writing!

P.S.- Funny joke Mrs. Warner : ) Thanks for the blanket Mason- I use it whenever I nap!

First Day Home

Just a quick update on our first day home. Maddy was extremely tired today and she had a tummy ache all day. However, we got her blood pressure checked and it was down! : ) The rest of the family received flu shots today to try to prevent us from bringing home any germs. Tomorrow, we can rest. Thursday, Maddy needs blood work done and then on Friday, we head back to St. V's for another spinal tap and blood marrow test. YUCK!

We're Home!

It is Monday evening, November 16th, and our whole family is home! Maddy responded well to the first round of treatments. Her blood pressure was a little high, but we promised to get it monitored at home, so they let us bring Maddy home a day early. We think her blood pressure will go down when she can sleep in her own bed and not be woken up several times in the middle of the night.

This is one time when Russ is glad his wife is "overly organized"! We were given a three ring binder full of instructions and a calendar so we would remember what we have to do for Maddy each day. The first 28 days is what they call the "Induction" phase which involves a standard treatment plan for all ALL patients. In this phase, we have many medications to give Maddy at home and will be traveling to St. Vs once a week for chemotherapy along with spinal taps and/or bone marrow aspirates every so often. The next phase of treatment is called the "Consolidation" phase, and this phase will be more tailored to Maddy based on genetic testing that is being done. It will take some time to get used to our new routine and then it will change again.

We can feel Gods's presence with us. Thank you for all the prayers. We feel so fortunate to have so many people who care for Maddy and our family.

The Journey Begins

Our journey began on Thursday, Novemeber 12, 2009 when our precious Maddy was diagnosed with Acute Lymphocytic Leukemia. Earlier in the week, Maddy had been complaining of pain in her leg and was running a low grade fever. On Tuesday, Russ took Maddy to see our family doctor who did an X-Ray and ordered some blood work. The results of the blood work came back with some peculiar findings, and we were quickly referred to St. Vincent Mercy Children's Hospital in Toledo.

Thank God for Dr. Row for ordering the blood tests so quickly. We were told by Dr. Kitchen, the oncologist, that they see many patients who have been going back and forth to the doctor's office for weeks before blood work is done.

We arrived at St. Vincent's at 1:00 on Thursday. By Friday evening, the diagnosis of ALL was confirmed, Maddy had surgery to insert a port, and she had received her first round of chemo and steroids. While Russ and I just wanted to stop time, we were thankful that the doctors and nurses moved quickly to get Maddy on the road to recovery. It is going to be a long road, but we are grateful to all the friends and family who have already stepped up to support us through this journey.