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...

Home

Well after much debate, Dr. Jasty won out and Maddy had her catheter removed today and a temporary PICC line put in to avoid any further complications due to the infection.  On top of that, she also got her flu shot.  Needless to say, Maddy was ready to leave the hospital.  Once we got all equipped with the portable IV pump and a week's worth of  IV antibiotic, we were able to leave.  It is good to be home even though our furnace is not working and it is only 61 degrees in our house...  BURRRRR!

How Quickly Things Change

It had been a while since I posted so I gave an update on how well things were going on Wednesday- I must have jinxed us!  On Thursday, Maddy ended up in the hospital and she is still in.  We had noticed a red mark on her neck a couple days prior.  We didn't think much about it at first-thought maybe she scratched it or something rubbed it.  It wasn't until Thursday morning when the redness was still there and it perfectly followed the path of the catheter cord in her neck that we got a little worried.  After talking to Nurse Yoder at school, I mentioned it to the nurse at the clinic on the phone...  Needless to say, we were told to report to the hospital.  The red line traveling along the cord was a sign of infection- the only sign Maddy had.  They thought at first the infection was just around the outside of the catheter in the track where the cord runs, but blood cultures showed signs of infection in both lumens as well. We are now playing the waiting game treating Maddy with high doses of antibiotics in hopes to clear up the infection so that her line does not have to be pulled.  This, however, puts all her chemo on hold.  Also, Maddy's oncologist is worried that the infection will continue to come back.  We will hopefully know a little more tomorrow and by Monday or Tuesday will possibly be able to make a final decision on what to do.  YUCK!

Conquer Childhood Cancer Now

It has been a while since I last posted, so I thought I would give a quick update.  Maddy continues to do well.  She is enjoying school and is getting reacquainted with all of her friends.  We are still working on   helping her deal with her anxiety and her "perfectionism"-  don't know where she gets that!  : )  Some days are better than others, but she is getting there.  We are 6 weeks into Maintenance and all is going well.  Starting next week, she will have weekly clinic visits for the next four weeks for IV chemo.  Then she will have one cycle done and four more to go!  Our goal now is for her hair to grow back. Due to the radiation, the little hair she had started to fall out.  Again, it was getting into everything, so it was time to shave the remains.  As she sat on the front porch and I started to shave her head yet again, Maddy said for the first time, "I am getting tired of this!"  That pretty much sums things up...

On another note-

September marked Childhood Cancer Awareness month.  Conquer Childhood Cancer Now (CCCN), a local organization that works to raise awareness about childhood cancer and provide resources to families, spent most of the month spreading the word and doing fundraisers for their cause.  Maddy was fortunate enough to be a part of their Awareness Day at the mall in Defiance this past Saturday.  The event consisted of a bake sale, vendor fair, live auction, and the "Queen" contest.  Maddy was given the privilege of crowning the "Queen".  The day was successful, and as usual, the generosity shown by the community was amazing!

End of Radiation Celebration!

Lately, we have looked for any reason to celebrate.  Today marked the end of radiation, so Maddy decided this was cause to celebrate!  To start this celebration, we went out for dinner- Chinese of course with her Chinese food buddies Miss Heckel and Mrs. Buehrer.  She will also be bringing donuts for her classmates and staff at the elementary tomorrow! It has been great to see Maddy at school and so happy lately!  We hope to continue to find more reasons to celebrate!

Radiation
(and Maddy got to bring the mask home-  great for Halloween!)

                                  When the doctor is away the patients will play- or atleast this patient!

P.S.

The 2012 Cure Search Walk in Toledo was a huge success raising over $30,000 for childhood cancer research.  Thanks to everyone who donated!