Post from Maddy

Hi, it's Maddy. I am very happy to get back to school. My teacher is very nice and my class is too.

Love,

Maddy

The Journey Continues- One Year Later

This past Friday, November 12th, marked the one year anniversary of Maddy's leukemia diagnosis. It is hard to believe that ONE whole year has gone by. Looking back, it is also hard to believe all that our family has experienced in just one year. Obviously, we had many lows but we can honestly say that this past year has also been filled with much joy, hope, faith, kindness, and compassion! Maddy continues to do well with her treatments and we keep getting closer to that day when she will hopefully be able to put all of this behind her and never look back!

Our gratitude goes out to all of our family and friends who continue to support us throughout this journey...

Homecoming Princess 2010

A picture is worth a thousand words!

Faith

Looking back at this past week, we feel God answered our prayers and revealed to us the power of FAITH. We felt the need to share this.

Last Sunday, we learned that a very brave young man named Kellen Keiser lost his 16 month battle with cancer. We were first introduced to Kellen on November 13, 2009. This was when a local news channel did a story about Kellen who was using Skype to "attend" school while he was going through treatments for Acute Lymphoblastic Leukemia. We watched this news clip from Maddy's hospital room at St. V's the day after she was diagnosed with the same form of leukemia. From there, we were fortunate to get to know Kellen and his family a little bit. We would see them at the clinic or on the 6th floor of the hospital. We would get updates on Kellen from family who live in Archbold. We were able to walk the survivor lap with him at this year's Fulton County Relay for Life. Kellen and Maddy wore each other's bracelets... We can't claim to have known Kellen or his family well, but we felt as though we shared a bond brought on by unfortunate circumstances. When we learned that Kellen passed away, our hearts were broken for his family and all the fears that we had managed to put out of our minds, came rushing back in. We could feel our FAITH wavering.

When Russ and I went to Kellen's viewing on Wednesday, his dad said he did not know how anyone who did not have FAITH could do this and while it was unfortunate that Kellen had to lose his battle with cancer after 16 months of fighting, he took comfort in knowing that Kellen was able to touch so many lives along the way. We were glad that Kellen was no longer in pain and as we looked at him in his Ohio State jersey wearing Maddy's bracelet, Russ and I felt blessed to have known Kellen, and Tina and Kirk's FAITH gave us strength.

On Thursday, Maddy was a "Celebrity Scooper" at Cold Stone for their Make-A-Wish fundraiser. (Thank you to everyone who came to support this great cause!) At this event, Maddy was fortunate to meet three Defiance High School students who were asked to participate in this event. Anthony, Alexis, and Jacob spent three hours of their time passing out ice cream and making Maddy feel special. At the end of the night, they presented her with some Defiance t-shirts. (We joked that Maddy would have to be careful when she wore them.) Then, Anthony said he had a couple of other things he wanted to give Maddy. He gave Maddy a piece of net that he had cut down during a District Basketball Championship. He said it was to remind her that if you set your mind on something and work really hard, you can achieve great things. He also gave her a little wooden statue that he said he had in his car and wanted her to have. It had the word FAITH carved at the top and the following bible verse engraved at the bottom:

If you have FAITH as small as a Mustard Seed, nothing will be impossible for you. (Matthew 17:20)

We left the Cold Stone event again feeling our FAITH strengthened.

Finally, today at church, Russ and I listened to the gospel. In the gospel, the Apostles asked Jesus to increase their FAITH. Jesus said to the Apostles that if they have FAITH as small as a mustard seed, they would be able to uproot a tree and plant it again in the sea... (Russ and I just looked at each other.) Father Gary went on to say that people of great FAITH are dedicated to loving God and that love is so powerful that it moves their hearts to great acts of self-giving. People with great FAITH serve in ways beyond what is expected of them. When we ask Jesus to increase our FAITH, we see the results in our greater love for God and in our willingness to give of ourselves in service to the needs of others.

We left church this morning with our FAITH renewed and thankful for the FAITHFUL people God shared with us this past week.

September Update

Maddy went for her monthly chemo treatment at the clinic today. The doctor and nurses all commented on how good she looked. They all loved her new hair-do! We were a little worried about her port not working properly. It was a little sluggish last month, but it worked just fine today. Her counts were also good. They were actually too good. The doctor said they want to keep her absolute neutrophil count (her immune system) around 1500 during this maintenance phase. Maddy's count has been higher than this the last few months. This means they may need to increase her oral chemo meds next month. We guess they want to give her as much chemo as possible to make sure those leukemia cells don't come back. We'll have to ask more questions next month.

Maddy is excited to be back at school. So far things are going well. It is wonderful to see her back with her friends. She is armed each day with her hand sanitizer and Clorox wipes. We will soon all be getting our flu shot too. Our hope is to keep Maddy as germ free as possible so she can continue to be at school with her friends.

On September 30, Maddy will be in Defiance at the Cold Stone Creamery from 5-8 PM as a celebrity scooper. On this day, Cold Stone donates a portion of their sales to the Make-A-Wish Foundation. As we have said before, Make-A-Wish is truly a wonderful organization. They have done a lot for our family. This is our way of giving back, so come out and get some ice cream on September 30th!

First Day of School

Armed with hand sanitizer and Clorox wipes, Maddy was able to go to school today and join her classmates for the first day of second grade. Many children were excited to come back to school while others were not so excited. Maddy, on the other hand, was extremely excited! She has been ready for school to start since July. Even though she "kept in touch" through Skype last year, nothing could replace the face to face interaction with her teachers and peers. It was a reminder to us that sometimes we take things for granted and don't realize what we have until it is gone. Through Maddy's experience, we have learned yet another life lesson.

Maddy will continue to take her daily and weekly chemo medications at home. Once a month we have to travel to the clinic for a chemo treatment. As long as her counts stay up and she can avoid as much sickness as possible, we hope to have a somewhat "normal" school year. We are keeping our fingers crossed!

Give Kids the World

We took our Make-A-Wish trip to Give Kids the World on July 13-19. (Sorry it has taken so long to post- our home computer crashed the day we got back.) All we can say is that the Make-A-Wish organization is truly wonderful and the Give Kids the World village is named appropriately. We were treated like royalty during the whole trip and it was a week of NO worries! We went to many parks, swam in a beautiful pool, participated in numerous activities at the village, and ate A LOT of ice cream. We are attaching some pictures, but it was difficult to choose which ones to post out of the 500 we took! The only problem- we are now so spoiled that any future vacations will fail by comparison.

P.S.- Even though we did not get to swim with the dolphins, we did meet some at Sea World. And yes- they do have belly buttons! : )

July Update

Maddy continues to do well. Her hair is growing back thicker than it was before. She had her blood counts done today to make sure she was ready to go on our trip next week and they came back good. We are all excited about our vacation! Joe and Deb, Maddy's wish granters, brought us a "Count Down to Disney" calendar just to add to the excitement.

Lizzy is getting bigger and just as ornery as Maddy. She continues to be an enjoyable addition to our family.

We hope everyone is staying COOL in this heat. As you can see from the last picture, Maddy has figured out a way to stay cool even though she is not allowed to swim in the lake. : )

The Simple Things In Life!

Just a quick update. Maddy is doing well. She goes back to the clinic for a check up and her monthly chemo treatment next week. We will be able to see by her blood counts how she is handling the maintenance phase. She participated last Friday in her first Relay for Life. What a wonderful event! Both fortunately and unfortunately, it was a reminder that we are not alone.

Maddy is still packed for our trip this summer. Unfortunately, there was a glitch in the travel plans, so we will not be going until mid July. Our dolphin swim has had to be postponed for another time, but we are looking forward to staying at the Give the Kids the World park at Disney. We have heard this will be an experience that we will never forget.

Finally, over the last several months, our family has learned to appreciate the simple things in life a little more. We have found ourselves getting excited over "things" that we would not have normally even noticed. Take for example, this past Wednesday. Maddy woke up and got out of bed. She came into the bedroom to ask me to help her pick out a shirt to wear and I was so excited (enough to go get a camera and take pictures) that she had Bed Head! That's right- BED HEAD! Maddy's hair is finally getting long enough that it is starting to stick up after being slept on. We had not seen Maddy with Bed Head for quite some time and it was an event worth noticing.

I hope all of you can take a step back and find those simple things in life worth noticing!

(Maddy with BED HEAD!) : )

Relay For Life

This Friday, June 11th, the Fulton County Relay For Life will be hosting their event. Maddy is going to participate in the survivor lap to kick off the event. We didn't have time to think about a team this year, but felt the need to participate in some way. If you haven't already donated to this cause, you can do so in Maddy's honor at:

http://main.acsevents.org/site/TR/RelayForLife/RFLFY10OH?px=17014520&pg=personal&fr_id=23543

So far, Maddy seems to be tolerating the Maintenance phase. She gets her blood counts checked locally next week. Her hair is growing back quickly and her eyebrows and eye lashes are coming back in thicker and darker. She is starting to look like her "old" self. It is hard to believe how different she looked just a couple of months ago. We attended a Make-A-Wish event a while back and they had a photographer taking pictures of the kids. They just emailed them to us yesterday (see above). The pictures were another reminder of everything Maddy has been through, but also a reminder of how BEAUTIFUL she is inside AND out no matter what!

We are getting excited about our Make-A-Wish trip. We are praying all goes as planned.

Maintenance

YIPEE!!! Maddy's counts are up and she starts "Maintenance" tomorrow. During this phase, Maddy will have chemo every 4 weeks through her port, steroids 5 days each month, one oral chemo pill once a week, another oral chemo pill once a day, and spinal taps for chemo once every 12 weeks. Each maintenance cycle lasts 12 weeks and will be repeated until January 15, 2012. Again, mark your calendars for the PARTY!!! : )

Maddy's hair is starting to grow back. We are not sure we are going to have a blondie anymore- it is coming in dark. The doctors say she should keep her hair during maintenance. Hopefully, by the time school starts next year, Maddy will have a head of hair and be ready for school.

Looking back, it is hard to believe we have made it this far. We could not have done it without all the support we have received from family and friends. THANK YOU!! THANK YOU!!

It is always a relief to make it through another year of school, but this year even more so. We are looking forward to a little less hectic schedule this summer and some time to relax and recoup. A long nap sounds really good...

Maddy says "I love you!" to everyone.

Delayed

Just a quick update. Maddy's counts are too low to proceed with treatment tomorrow, so it has been delayed until next week. Her immune system is REALLY low (lower than last week), so we have to be really careful that she does not get any germs. So far we have been lucky. Everyone in the house has had a cold except Maddy. The doctors are hopeful that her counts will go up by next week.

Funny Stories

Maddy went to the clinic today. Her red blood count was VERY low, so she needed a pint of blood. Her Absolute Nuetrophil Count (her immune system) was also low. We are praying that it comes back up by next week so we can proceed with the next phase of treatment.

Maddy continues to be strong and never fails to make us laugh. A couple of days ago, she realized that next month is when we are going to try to take her Make-A-Wish trip. She thought she needed to pack, so upstairs she went. A little later, she had all her bags packed and they are sitting in her room ready to go! Talk about being prepared...

Today at the clinic, Maddy met a little girl with ALL who happened to be adopted. Maddy now thinks we need to adopt a little boy (since Make-A-Wish didn't grant her wish for mom to have another baby). She got on the computer and looked up "adoption in Ohio" tonight. When we told her that we would not be adopting, Maddy just kept saying, "You never know!" I guess she is right. We NEVER do know what life has in store from us. Another lesson learned from our six year old...

Time Flies (Even When You are NOT Having Fun)

Maddy now has all of her chemo treatments done and will be taking her last chemo pill of this phase tonight. She went to the clinic today for an exam and blood work. (Her counts are down a little, but we hope they are on the way back up.) For the next two weeks, we will monitor her blood counts and if all goes well, Maddy will start Phase 5 (Maintenance) on May 20th!

Sometimes it feels like it has been six years ago since Maddy was diagnosed instead of six months ago, but here we are almost in the home stretch. Recently, we received Maddy's yearbook from school. In it was a picture of Maddy dressed in her cowgirl outfit for Halloween taken at the end of October. Looking at her in this picture, you would have never guessed that two weeks later, she would be diagnosed with leukemia and her life would be forever changed. It was yet another reminder that we can't take anything for granted and that it is so important to make the most of each and every day!

We are grateful for the continuing support and prayers of family and friends. With it, we feel like we can make it until January of 2012!

Lizzy Update from Maddy

Lizzy has been doing good. We went on a walk this evening. Lizzy likes to go under the couch and sleep. She also likes to play with Max, our big Beagle. He can't fit under the couch, so Lizzy teases him and then runs under the couch. It is really funny!

Love Maddy

Maddy- The Energizer Bunny!!!

Maddy did well this week with her treatments. On Thursday, she was admitted to the hospital. She had a spinal tap and altogether had four different types of chemo that day. The nurses observed her overnight and we came home on Friday afternoon with her port still accessed. Mom and Dad got to administer chemo through her port on Saturday and Sunday and she continues to take an oral chemo pill. Through all of this, Maddy just keeps going and going with a smile (or funny face) as you can see in the pictures above. Maddy continues to be an inspiration to us and an example of just how strong one can be when you trust in the Lord.

Off to the Hospital

Maddy's counts are up enough to continue on with her next treatment. We are headed to the hospital today. She has to be admitted overnight. Maddy is trying to figure out how to sneak Lizzy into the hospital. She is checking to see if she will fit into my purse right now... : )

New Family Member

No... Maddy did not get her Make A Wish that Mom would have another baby, but she did get her wish for a new "lap" puppy to keep her company. Mom broke down first and we convinced Dad. We welcomed Lizzy, a beautiful little Shih Tzu girl, into the family on Sunday. Dad and Max are really out numbered now!

Delayed

Maddy had her blood work done this morning. Her counts are too low to proceed with her next treatment, so it has been delayed until next week. The doctors predicted this, but of course we were hoping to keep moving forward without any delays. She will have her counts checked again next week and hopefully they will be back up so she can have her treatment on Thursday. She will have to spend the night in the hospital and come home with her port accessed. Her mom and dad get to learn how to administer drugs through her port so we can do it at home for a couple of days after she leaves the hospital.

On the positive side, Maddy is feeling better these days and she is hungry ALL the time!!!!!!! Her breakfasts have been consisting of a bowl of cereal, a bagel, a cheese roll (see picture), and some MEAT of some kind. She then has a mid-morning snack, a before lunch snack, lunch, an afternoon snack or two or three, supper, and several evening snacks... We really don't know where she puts it all!

We continue to appreciate all the thoughts and prayers.

Happy Easter!

We hope everyone was able to enjoy the wonderful weather this past week and the Easter holiday. We took advantage of the weather and did a little bike riding and fishing this Spring Break.

Maddy had a treatment on Wednesday, and as the doctors predicted, her counts are falling. Her immune system is low and her hemoglobin and platelets are falling. As a result, Maddy has to be more careful to stay away from any germs and she does not have a lot of energy. She goes back for a check up this Wednesday. She may need some blood products to give her a little energy. Then we wait a week and check her counts again. If they are not too low, she will have yet another type of chemo treatment on the 15th. She will have to stay overnight at the hospital for this treatment.

Being able to go outside and feel the sun's warmth and see all the new life blooming has given us renewed strength and has reminded us again that God is good all the time, all the time God is good!

Phase Four Update

Maddy's counts were good last Tuesday, so we were able to start Phase Four on schedule last Wednesday. This phase started with a spinal tap with chemo, two additional chemo drugs through the port, and seven days of steroids. It was a rough start. (Those steroids are NOT nice!) Maddy wasn't feeling the best, but is better now. She had her second chemo treatment today. Her counts were good, so the doctor told her to go do something. She and her dad stopped at the Imagination Station (formally COSI) on the way home from the clinic. Maddy had a lot of fun. The doctors predict that her counts will drop in 10-14 days, so we will try to squeeze in as much fun as possible this next week.

Bald IS Beautiful Again

Today, Maddy and Russ participated in the St. Balderick's hair shaving event that was held in Archbold. As usual, we are amazed by all the support of our family and friends. As of 6:00 PM on Wednesday, just three short days after Maddy and Russ decided to do this event, we had $930 in pledges. The entire event raised close to $6000.00 and counting. We want to thank everyone who came out to support Maddy and Russ.

Channel 13 was at the event and interviewed Maddy and Mom. Below is the link to the article and video from their website. (The interview aired on the 5:30 news.)

http://abclocal.go.com/wtvg/story?section=news/local&id=7335958

St. Balderick's Event

We just found out about an event taking place on Wednesday, March 17th at Terry Henricks in Archbold. St. Balderick's Foundation is a non-profit organization that raises money for childhood cancer research. They host "head shaving" events. Maddy and Russ have decided to participate. In turn, we are asking for "pledges". If you are interested in making a pledge, please go to:

https://www.stbaldricks.org/participants/maddy

You can make your donation at this site. Below is the "before" picture. We'll be sure to post the "after" picture! : )

God Works in Mysterious Ways

Maddy is still "on schedule". Her blood work came back good on Friday. We took advantage of this and the beautiful weather to get out a little this weekend. We went to the Outlet Stores in Angola to get a few new Spring outfits. Then, our family went out to eat supper at Ruby Tuesday. While at supper, we were once again reminded of God's presence in our lives. Half way through our meal, our waitress came up to our table and said that a gentleman at another one of her tables asked her to give us something as he was leaving the restaurant. She slid a $100 bill across the table to us. This complete stranger did not say anything, did not give his name, and was gone before we could say anything to him. All I could say was "thank you" to our waitress as she stood there about in tears. This was yet another act of kindness and generosity that our family has been blessed to experience. We sat wondering what this person was thinking and what made him perform this act of generosity.

Russ and I have always believed that everything happens for a reason. There have been many times in our lives when we wondered "why" only to realize later that God had a plan for us. (What's that country song about unanswered prayers...) When Maddy was diagnosed with leukemia, our first reaction was to ask "why". Now we have faith that this is part of God's plan for Maddy and for all of us. It may take us a long time to figure out what this plan is and we may never fully realize it, but one thing is for certain... we now realize we are surrounded by God's presence each day and our lives have already been changed for the better. Our family says "I love you" a little more, we pray together as a family a little more, we recognize what we are thankful for a little more, we play together a little more, and we appreciate the little things in life (like the generosity of a complete stranger) A LOT more.

Our hope is that Maddy helps others experience God's presence. Instead of feeling sorry for her, we hope when people look at Maddy with her little bald head and her toothless smile, they realize just how precious life really is. We hope they see the strength that God has given her. If looking at Maddy causes just one person to realize this, then maybe it will make this journey worth taking.

Hi!

Hi! It's Maddy. This has been a good week. Tomorrow I have to go to get blood work done, but I don't have any treatments. With Miss Heckel having surgery, I missed my class this week since we did not Skype. I hope to see all of my friends again soon.

(I am thinking and praying for you Miss Heckel. You took care of me when I got sick. I hope to help take care of you now. I wish I could come visit you! Maybe we can both Skype into the classroom when you are feeling better. )

Love,

Maddy

Phase Three- Last Treatment

Maddy had her last treatment in Phase 3 on Friday (2/26). Her counts remained good throughout this whole phase and everything took place on schedule. She now has two weeks off of treatment and we just have to monitor her blood counts locally. If all goes well, we are scheduled to start Phase 4 on March 16th. Phase 4 is pretty intense, so we are trying not to think about it much yet. We are going to enjoy the next couple of weeks.

Maddy lost another tooth this past week. She now has a very big whole on the top and bottom. We tell her that she is soon going to be hairless AND toothless if she keeps this up! : )

Maddy sends her love Miss Heckel...

Some Pictures

Maddy sporting her Mud Hens gear that she got from Mr. and Mrs. Yunker. If you look closely, you can see her "holey" smile!

Maddy and Julia playing in the snow. Maddy's angels are looking over them.

Three Down

Maddy had her third treatment in the Interim Maintenance phase today. She has one more treatment next Friday and then she has a little break before the next phase, Delayed Intensification, starts. She will have her blood counts monitored locally to determine if this next phase can start on time. She had a spinal tap with chemo and her two chemo drugs through her port today. She isn't feeling the best this evening, but hopefully a good night's sleep will help.

Hi!

Hi! It's Maddy. Fridays treatment went well. I just got a little sick to my stomach. My next treatment is next Tuesday (2/16). I have to get a spinal tap.

Love,

Maddy

XXOOXXOO

P.S.- I lost another tooth this weekend!

100th Day

Today, the first graders celebrated the 100th day of school at the Knights of Columbus. I (Maddy's mom) got a little sad as I visited with all the first graders and saw what a neat experience this was for them. Of course, the first grade teachers sent plenty of activities for Maddy to do at home with Nanny, but it just wasn't the same. The day had not started out well and this was enough to put me over the edge. I had a little pity party for myself back at school (and of course had many wonderful friends who gave me their shoulders to cry on), and then I went back out to the Knights of Columbus to help wrap up the day. When I got home, Maddy showed me everything she had done with Nanny for 100th Day. Nanny took a lot of pictures (see a couple below).

Russ made it through his first two days back at school. It feels like the start of school all over again for him. He has to get used to talking all day again!

All else is going well...

Thank God for Grandparents

Maddy had another good week. She is tolerating her chemo treatments and still has lots of energy. She lost her second tooth on Saturday and we were thankful that the Tooth Fairy didn't have to visit her in the hospital this time. Maddy goes back to the clinic on Friday (2/5) for her next treatment.

It is hard to believe that it is February already. After much thought and prayers, Russ has decided to go back to school starting tomorrow. Our goal is to make it to Spring Break and then reevaluate the situation depending on how Maddy is doing and what the next phase of treatment holds. We are so thankful that Maddy has wonderful RETIRED grandparents who are willing to help take care of her. They are going to take turns spending every other week at our house. Russ gave the grandmothers a lesson on how to Skype. We are hoping all will work out well! A few extra prayers may be needed.

Monday Update

Today was a good day! Maddy's treatment went well today. Her counts were all good, so everything went as scheduled. She didn't cry at all this time when the nurse accessed her port. She seems to be handling the medication without any nauseousness so far. (She'll be ready for that Ho-Ho cake on Friday Mrs. Warner!) We also got an email from our friend, Christi Ranzau. This past weekend, the Ranzau family went to the Rascal Flatts concert in Toledo. Brodie, their son, won a back stage pass before the concert and he so thoughtfully gave the band one of Maddy's lime green bracelets. If you look closely at the pictures below, you can see that the guitarist, Joe Don Rooney, wore her bracelet during the concert. When we showed Maddy the pictures, she was amazed and thought that it was pretty cool!

Hi- It's Maddy. I just wanted to let everyone who has been thinking of me and praying for me know that I LOVE YOU ALL SOOOOOOOOOOOOOO MUCH!!!!!! I can't wait to see all of my classmates and Miss Heckel tomorrow on Skype. I missed you all today!