Christmas 2009

Maddy continued to feel well this week with the exception of a few headaches, so we took advantage of this to make the most of the Christmas holiday. We went to the Christmas lights at the Toledo Zoo on Wednesday evening. Being outside, Maddy was able to do this. Maddy had her "procedure" as she calls it on Thursday. All went well. We were then able to go to Grandma and Grandpa Lambert's for a few hours on Christmas Eve. On Christmas morning, the girls had us up at 5 AM to open presents. They were excited to get a Wii from Santa. Maddy also got her scooter and Coo-coo clock that she asked for from Santa. We are all enjoying our time home together!

Maddy's New Motto

Maddy's Angels

On December 22, 2009, Maddy had a special surprise visit from her "angels". She looked out the window and saw a bus pull up and all her classmates, Miss Heckel and Mrs. Conway got off the bus. They sang carols to her, gave her a bunch of presents and a special Christmas book, and presented her with a poem that Mrs. Conway had written entitled "Maddy's Angels" (see below). Later in the day, Maddy was able to Skype into the classroom and participate in the Christmas party thanks to all the parents involved who provided her with everything she needed at home. Maddy had a great day! One of the hardest things for Maddy right now is feeling like she is missing out on all the "normal" activities day to day. We can't thank everyone enough for making Maddy feel like a part of all the fun! Maddy truly does have many angels looking over her.

Maddy's Angels

by Shelly Conway

God gives us angels

to watch over us with love.

These angels carry prayers for you

to Him in heaven above.

These angels are with you when trouble comes your way.

These angels hold your hand and help send your fears away.

When it's hard to find your courage,

and sometimes you shed a tear,

close your eyes and picture us, and feel that we are near.

When there are many questions and faith's been put to the test,

we can offer you a shoulder for support and needed rest.

Through times of sorrow when things don't seem so bright,

your angels will be there to make the darkness light.

When the road seems so long, and the load is more than you can bear,

we'll walk beside you,

we'll carry you,

anything to show we care.

We're beside you throughout all of this and we wondered if you knew,

we are ALL your angels, Maddy,

and we thank God so much for you!

Bald IS Beautiful!!!

Hi! It's Maddy. I just wanted to show off my new hair cut. I got tired of Mom having to follow me around with a lint brush because my hair was falling out. We had Christmas on Saturday with Nanny and Pop-pop Barnard. I asked my Aunt Debbie if she would just shave what was left of my hair off. Mom and Dad cried a little, but in the end we were all laughing. My Pop-pop shaved his head too so we could be twins. My head is prettier than his though! : )

Merry Christmas!

(This is the closest that the Lamberts will be coming to a Christmas card this year. )

From our family to yours, we wish

you all a very Merry Christmas

and a Happy New Year!

Consolidation

Maddy will start the second of five phases of her treatment called "Consolidation" tomorrow morning. We went to the clinic today to talk to the doctors. Her Minimal Residual Disease (MRD) came back negative (< .1% leukemia cells) which is what we were praying for. This means that Maddy is officially in remission and now we are going for the cure. We learned more about clinical trials. We gave consent for Maddy to be a part of a clinical trial which put her name into a computer that randomized her treatment. Basically there are two types of consolidation treatment. They randomly choose patients to receive one of the two treatments- one being more intense than the other. Maddy was randomized into the less intense treatment. She will be in this phase for a month. Once we get through the next month and if all goes well, the rest of the treatment will take two years. Mark your calendars for January 14, 2012. The Lamberts will be having a BIG party!!!

We are now praying that Maddy does not have an early relapse and that she continues to respond well to treatment.

The last few days have been wonderful. We have seen glimpses of the "real" Maddy- playing, picking out outfits, primping in the mirror... It again reminded us that we need to cherish each day!

Well, I guess that is enough for now. We'll leave you with a joke that Maddy wanted to post:

What did the Teddy Bear say when he was offered dessert?

No thanks, I'm stuffed.

(Thanks to the Oyers for sharing their joke book!)

Home Sweet Home

Just a quick note to let everyone that we are home! Maddy gets a week off of treatments and taking pills. We will meet with the doctors next week to see where the next step in this journey will take us.

Another reminder of how we often take the simplest things for granted when they are no longer so simple- I wanted to cry when I went to the basement to find Julia and Maddy playing Barbies this afternoon once we all got home. This is the first time in 29 days that we have all been home together AND Maddy has felt good enough to go to the basement to play!!

Day 29

Maddy's procedures went well today. She is so brave! We are still in the hospital though. Her tummy is still not the best, but it seems to be better today. The doctors are starting to wean her off some of the antibiotics and they did another X-Ray. We haven't seen that yet to know what is going on. Maddy's hemoglobin (red blood cells) also dropped so she had to have another blood transfusion today before her procedures. If it's not one thing, it's another!

Maddy did feel good enough to go to the playroom today. The American Legion visited and read a story to the kids about a dog who went to the hospital and they gave all the kids the book and a stuffed dog named Josh. Channel 11 news was there and the Maumee newspaper, The Mirror. Maddy may be a celebrity! : )

We hope to get Maddy home soon. We'll let you know.

P.S. from Maddy- The Tooth Fairy found me! She left me a dollar and it was folded up into a little square under my pillow. Mom and Dad took pictures of me with my missing tooth. They will post them when we get home.

Lost Tooth

I lost my first tooth today! I was eating my Subway sub that I made Dad go get me for supper when I saw something drop out of my mouth. It was my tooth! I am still in the hospital, but Mom thinks the Tooth Fairy will still be able to find me. I hope so!

I want to thank everyone for thinking about me and praying for me.

Love,
Maddy

Weekly Hospital Stay

Well, we have once again taken our weekly trip back to the hospital. Maddy was admitted again on Tuesday (12/8) for her stomach issues. If we counted correctly, we have spent 11 nights out of the past 27 in the hospital. YUCK!! The doctors are running more tests and watching Maddy. We aren't sure when she will be able to come home.

On a more exciting note, Maddy has a loose bottom tooth. With a little more wiggling, she should lose her first tooth soon! The Tooth Fairy may have to make a trip to the hospital! : )

Depending on how Maddy is doing, she may be in the hospital until Friday. This is the big day- the end of the Induction Phase of treatment. We are praying that Maddy's bone marrow has less than .1% (that's less than 1/10th %) blast cells, which if we are understanding correctly, will put her in a lower risk category. By next week, we should have the next "road map" outlining the next phase of treatment.

Christmas Party

Today, our family went to a Christmas Party that was hosted by the Oncology Department at St. V's. Maddy did not feel up to partying much, but it was good to get out. We met and talked to a family that went through what we are going through. It was nice to talk to them and it gave us some comfort knowing that there is light at the end of the tunnel.

Maddy and Julia got to get their picture taken with Santa. As you can see, the steroids that Maddy is taking make her cheeks chubby. We tease her that she is storing food in them so when she wakes up hungry at night, she has a snack to eat! : )

It is hard to believe that this coming Friday will be Day 29 of Maddy's treatment and the end of what they call the "Induction" phase of treatment. (Time flies even when you are not having fun!) On Friday, Maddy will have a chemo treatment, bone marrow test, and spinal tap. The doctors will send her bone marrow in for testing. Based on the results of these tests, we will find out what the the next phase of treatment will hold for Maddy.

Home Again

Maddy's fever stayed away, nothing grew on the cultures, and her blood counts went up, so the doctor asked Maddy if she wanted to come home today and just come back to the clinic for her chemo treatment tomorrow. Of course she said "yes"! It is so nice to have all of our family under one roof again. If all goes well, we should have a quick trip to the clinic tomorrow and be back home by tomorrow afternoon.

God is good all the time, all the time God is good!

December 2, 2009

Today was a good day! Maddy's fever broke last night and she felt better today. She actually stayed awake long enough to read a book, watch a little TV, and beat her Dad at Uno! The doctors have been watching all of her cultures and nothing seems to be growing yet. They will continue to watch them over the next couple of days. Whatever was causing her fever must be responding to the general antibiotics she has been getting. If her fever stays away and nothing "grows", she should be able to come home on Friday after her chemo treatment with some antibiotics.

Thank you to everyone for all the extra prayers this week!

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.