Coming Home

Whenever Maddy was in the hospital, she always wanted to go home sooner rather than later.  We would always tell the doctors that we had "places to go and people to see".  Maddy would flash her smile and promise to rest, drink, eat, etc. and the doctors would normally give in.

We think maybe Maddy is just waiting to go home now, so with the help of Hospice, we are going to bring her home today.

Merry Christmas

Our family had decided to try to focus on the true meaning of Christmas this year and do something different than worrying about all the stress of buying presents, etc.  We wanted to focus more on inviting Jesus into our hearts and spending more time with family and friends.  While being in the hospital with Maddy waiting for her to be blessed with a miracle here on Earth or to be blessed to be in Heaven with Jesus was not what we had planned, it has allowed us to do what we had set out to do. We have prayed everyday for Jesus to give us comfort and peace and we have been blessed to spend more time with family and friends here at the hospital than we have ever before during the holidays.  

Sometimes God does work in mysterious ways...

 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."

Still Fighting

Maddy was taken off the ventilator this afternoon.  It was a blessing to see her without tubes and wires coming out all over.   She continues to fight...  I guess she isn't ready yet to let cancer win!

Coming Closer to Home

We have decided to bring Maddy back to St. Vs to be closer to home and to be surrounded by the people who have become her second family over the last three years.  We should be on the road by 2:30 this afternoon.

The Journey

Maddy's journey that began three years ago has had many bumps along the way, but as we look back, we are amazed by all of the GOOD that has come out of all of the bad.  We are amazed how our little girl has inspired so many and how she has given us strength even in her darkest moments.  We looked forward to the day when we could celebrate the end of this journey with all of our family and friends who have prayed for us and supported us along the way.  While we are still praying for a miracle that would allow us to celebrate with Maddy here on Earth, we are faced with the real possibility that we may soon be celebrating Maddy's journey to Heaven.  While we keep reminding ourselves that it is in God's hands and that Maddy will be free of all her pain and suffering in Heaven, it doesn't make it any easier...

Monday

Today did not go has we had hoped and prayed.  After the sedation was lifted, Maddy was still showing severe effects of the encephalopathy.  She was examined by the whole team of doctors , so tomorrow, we will be meeting with everyone to figure out our next step.

Saturday

Peaceful day for Maddy...


We received texts and pictures all day of the Bone Marrow Drive- what an AMAZING day!  We wish we could have been there.  Our family has felt like we have been on a roller coaster these past few days-  seeing the incredible outpouring of support for Maddy and so many others who may also one day need a bone marrow transplant has renewed our strength!

THANK YOU!

Friday

Last night was another rough night.  The sedation was not keeping Maddy comfortable and she had several "episodes" throughout the night.  (I can't even explain how difficult this was to watch.)  They did another MRI this morning to make sure nothing new showed up and the results were pretty much the same as Tuesday- atleast no new complications.  They switched up some of her sedation medication and she has been a lot more comfortable today.  

Tomorrow is the bone marrow drive at the high school.  Maddy so wanted to go to this.  We hope it is successful and we appreciate all the effort that has been put into this event by everyone.

Thursday

Maddy had a peaceful night last night.  Russ, Julia and I were able to get some sleep.  After talking to the doctors today, the plan is currently to let Maddy rest and heal until Monday.  On Monday, we will slowly wean her off the sedation to evaluate her status.

This morning, Maddy's nurse was "roughly" performing some oral care and Maddy opened her eyes and had tears (Maddy still has severe mouth sores).  While I didn't like the fact that Maddy was hurting, it was a good sign that she reacted.  Needless to say, Mama Bear came out and the nurse now knows how NOT to perform the oral care!

We want everyone to know how thankful we are for everyone's prayers and support.  

The Plan

Maddy had another bad night.  She is very uncomfortable and the symptoms of the encephalopathy have progressed.  In order to make her comfortable and prevent any further complications, we have decided to put her on a ventilator and sedate her for the next few days to allow her to rest and heal.  After the few days, we will reevaluate her situation.

We are praying for her comfort.

Transfer

Maddy's condition has continued to worsen.  After an MRI this morning, it appears she is suffering from the effects of encephalopathy caused by the intense chemotherapy she recently had to get her back into remission.  This affects her central nervous system and is causing her to have difficulty communicating, walking, etc. and she still appears to be in a lot of pain.  The decision was made to transport her to the University of Michigan.  There the neurologists will hopefully be able to better assess her and give us a plan of action.

Maddy is getting tired-  please pray for continued strength to help her get over this hurdle.    

Rough Weekend

First, the good news-  Maddy had another spinal chemo treatment on Friday at which time they also checked the fluid for "blasts"-  leukemia cells.  Her blast count was down to ZERO-  this is the first major hurdle she had to get over.  We are soooo thankful for this!

The bad news-  the intense treatments seem to have taken their toll on Maddy.  Starting Thursday evening and into the weekend, she spiked more fevers, was vomiting, and experiencing extreme pain in her abdomen and back.  She will not eat and all she wants to do is sleep.  She is currently on two different antibiotics and an anti-fungal to hopefully kick whatever is causing her fevers.  She had some blood in her vomit, so they have her on a medication for her stomach.  They are giving her pain medication for her back.  They have done an ultrasound of her organs and an x-ray of her back.  All of her blood counts are wiped out, so she is getting a platelet and blood transfusion tonight.  We practically had to force her to sit up in a chair for a few minutes today and take four very small bites of food.  The doctors will probably start her on TPN (nutrition through IV) tomorrow since it is going on five days since she has eaten anything.

Hoping and praying that things start to turn around here soon!!!!

Back Again

We might have broken our record for the shortest turn around time-  Maddy came home from the hospital Tuesday evening.  She was wiped out on Wednesday barely able to keep her head up, so Russ took her back to the hospital Wednesday after school for a blood transfusion.  Blood work showed that her white blood count dropped from 1.3 to .3 overnight.  We knew this was not a good sign- no white blood cells means no immune system! Maddy and Russ got home about 10:00 on Wednesday after her transfusion.  By 3 AM, she spiked a fever and was headed back to the hospital.  The conversation with her doctor went something like this:

Operator: "I have Dr. Kitchen on the phone, go ahead."
"Hi, This is Dorothy"
"Fever?"
"Yea"
"I'll get her a bed."
"OK- See you in a little bit"

After three years, not much more needs to be said.  Maddy got to the hospital and they started the regular routine- cultures, antiobiotics, blood work.  Her fever did break after some tylenol and so far has stayed away.  She slept most of the day and is back to not eating.  Her white blood count went down from. 3  to .2 from Wednesday evening to Thursday early morning.  It looks like she will be in for the long haul until those counts start heading back up.  Her platelets have also bottomed out so she will get another platelet transfusion tomorrow...

We are all a little exhausted!

Home

Maddy is home!

She made it through five days of chemo, a platelet transfusion, and two spinal taps.  She is very tired, but we hope she feels good enough to go to school the rest of the week while she can.  She will have blood work on Friday and will most likely need transfusions this weekend.  She is scheduled for another spinal tap on Tuesday-  we are hoping the leukemia cells are gone by then!  They have been decreasing with every treatment.  We have an appointment on December 13th at the University of Michigan to meet with the bone marrow transplant team.  We will hopefully have a better idea of our next steps after this visit.

We will keep you posted.

I know I mentioned this in my last post, but I want to say again how blessed our family is to be surrounded by so many people who care about us.  We had already decided as a family before Maddy relapsed to do something different this Christmas.  We wanted to focus on the real meaning of Christmas- a celebration of God's love for us- giving of ourselves not just of material gifts.  Maddy's relapse was another bump in the road (or more like a gigantic pothole) in our journey that tested our faith.  However, in our darkest moments over the past couple of weeks, we have been lifted up by the prayers, support, kindness, and generosity of everyone around us.  We have experienced the true meaning of Christmas- who could ask for more!

Finally, we just want to share information about the upcoming Bone Marrow Donor Drive...  hope to see many of you there!