Current Plan

Maddy is in the hospital.  She went in this morning and had another spinal tap to receive chemo.  She also had an MRI and an EKG.  The white blood cell count has come down in her spinal fluid, which is good.  Her MRI and EKG looked good too.  The plan now is to start the systemic chemo-  Dr. Jasty decided on what she felt was the best combination for Maddy.  She will receive two different types of chemo for the next five days- barring any serious complications.  Then on Tuesday, she will have another spinal- hoping that this takes care of any remaining leukemia cells.  At that time, Maddy should be able to come home to "recover" as long as no fevers, etc. set in.  We then have an appointment scheduled for December 13th at the University of Michigan to talk to the Bone Marrow Transplant Team.

Knowing this, some of Maddy's friends and family have begun planning a Bone Marrow Donor Drive.  The purpose of this drive is to get as many individuals as possible registered with the National Bone Marrow Registry.  This registry is the method used for finding a bone marrow match for someone in need of a transplant.  A simple cotton swab to the cheek is the only process involved in a bone marrow donor drive. 

The drive will be taking place on Saturday, December 15th at the Archbold High School gymnasium.  The event will run from 10:00 a.m. to 4:00 p.m. 

Our family is once again reminded of how fortunate we are to be surrounded by so many people who care about us!  We can't thank everyone enough for all the thoughts and prayers that have been coming our way!  

Where We Are

Today, Maddy had surgery to put in another catheter and also received another spinal chemo treatment.  Maddy's bone marrow came back free of disease, so we need to keep it that way.   Everything went well and we are home for now until Thursday.  We spoke to Dr. Jasty today about what our next step will be.  Because there is no standard protocol to follow for Maddy anymore, she is checking with colleagues to determine the best course of systemic chemo treatment.  The goal right now is to get her spinal fluid cleared of disease and also treat her systemically to prevent the leukemia from returning in the bone marrow.  As this is happening, we will be going back to the University of Michigan to consult with the bone marrow transplant team and start a donor search as this looks like where we are headed.

For the next two days, we are going to attempt to go on with life as "normal".  Russ and I have some things to figure out from that point...

Peach's Neet Feet

In all the turmoil of the last few days, we neglected to share something special that Maddy received.  An awesome organization, called Peach's Neet Feet, custom paints shoes for children who have disabilities or long term illnesses.  Maddy received her shoes last Wednesday.  They are AWESOME!

If you would like to read about this organization, the web-site is below:

http://peachsneetfeet.com/

Maddy's Poem

Relapse News

Yesterday, Maddy had a "diagnostic" spinal tap as part of maintenance and had her PICC line removed.  We were so excited-  Maddy was finally "free" and she was looking forward to the next four weeks of being able to shower freely and she was even given permission to swim.   It was late in the day when she had her procedures, so we did not get any results of the spinal tap before we left the hospital.  We received a call today!  It was not the news we wanted to hear.  Leukemia cells were found in her spinal fluid again.  We are in a state of disbelief right now.

Maddy will go back to the hospital on Friday to receive chemo in her spinal fluid and have a bone marrow test- praying that there are no leukemia cells in her bone marrow.  She will then go back on Monday to have a catheter put back in and receive another chemo treatment.  Depending on the results of her bone marrow test and on the success of getting her back into remission determines our next steps.

Maddy continues to amaze us.  She saw her dad and I crying when we received the call from the doctor.  I found her in her bed crying.  SHE KNEW!  She asked "Why?" and said she just wanted to have hair again.  I reminded her that God had a plan for her and that she could do this.  She cried for her sister who was in her room crying.  We all hugged and cried a little longer.  Then Maddy jumped up and said that we had better go swimming while she had the chance, so we went out and rented a room at the Heritage Inn and Maddy swam and swam and swam...   we get our strength from her!

Three Year Anniversary

November 12, 2012 marks the three year anniversary of Maddy’s diagnosis of leukemia.  While we wish we could erase all the pain and suffering that Maddy has endured due to this HORRIBLE disease, we as a family never want to forget the amazing experiences we have had throughout this journey-  experiences that have taught us about generosity, love, hope, and faith. 

The last three years have made us come to appreciate the simple things in life more than ever!

With the holidays quickly approaching, we started thinking about what is truly important to our family.  Often, for our family, Christmas comes and goes so quickly and the focus of Christmas is on buying and receiving gifts and all the stress associated with this and NOT on what Christmas is really supposed to be about- a celebration of God’s love for us.

 John 3:16-17 says, "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him."

So, this Christmas, our family is going to focus on inviting Jesus into our hearts this coming holiday season and celebrating the true meaning of Christmas.  We are going to take time to stop and enjoy the company of family and friends and not worry about making sure all the presents are bought.  We would also like to “pay forward” all the kindness and generosity our family has been shown over the last three years.  To do this, we are asking not to receive any gifts this year but instead ask those of you who normally give us gifts to donate a little extra to one of your favorite charities.   We are also planning to take the money we would normally spend on gifts and donate this amount to various charities to help those less fortunate than us in your honor.

We hope that this holiday season is a time that everyone can celebrate the simple things in life!

A look back at the last three years...

Almost

I have been holding off posting lately in hopes that I could announce that Maddy had made it through the first of her 5 ten week maintenance treatment cycles and was on to the next.  She was due for a diagnostic spinal tap and the start of Cycle #2 tomorrow, but her counts did not make it so everything is postponed.  Hopefully, next week she will get back on track.

We have had a couple ups and downs this past cycle.  Because she had to have her catheter removed due to infection and a temporary Picc line put in, she will have to have surgery in December to place a new port-  Maddy decided she wanted to go back to a port instead of the catheter this time.  She has also been having some heart palpitations so she is currently hooked up to a heart monitor.  The last four weeks of chemo have also really knocked her counts down.   All of this has taken its toll on Maddy-  she gets tired easily and even goes to bed early on her own without  being told! She is a trooper though and keeps pushing forward usually with a big smile on her face!

Hope to post again soon with the news that we are on to the next cycle...