Tuesday, March 4, 2014

Maddie’s Journey, by Jenny DeHart

My daughter, Madison, was 13 when she was diagnosed with cancer.  It was June of 2011 and I took  3 of my children to the doctor to get their Whooping Cough vaccination.  While we were there and after the Dr. left the room, I asked the nurse if it was ok for Maddie to have the shot if she had whooping cough already.  When she went out to ask the Dr. he advised us to go to the ER before having the vaccination just in case.  I waited a few hours and we went after dinner, around 7:30 that night.  After 2 hours and chest x-rays, we found out that Maddie had a massive tumor in her chest behind her right lung, and as it grew it was pushing on her lungs and causing the cough.  We knew within two weeks that the tumor was cancerous, and so our journey began.

On August 5, 2011, Maddie had what we refer to as her "big surgery".  It was a scary day for me, as things drastically changed the day before when we went for her pre-op appointment.  At first I had been told that they would be removing the tumor from her side, under her arm, and no scar would show, and that they were allowing 5 hours for her surgery.  During the pre-op, I was informed that the surgery now was scheduled for the whole day, and that the tumor was wrapped around the arteries to her head and right arm, as well as the nerves to her diaphragm and vocal chords.  They also let me know that they would be opening up her chest to get it out.   I was horrified and they went further in telling me that if they removed the whole tumor, they would have to remove her right arm and she would not have a voice anymore.   I didn't have time to process any of this at all, she was going in the very next day.

About four hours into the surgery, the Dr. called me in the waiting room and told me that the MRI was wrong and the tumor was NOT wrapped around all those important arteries and nerves!!  That was our first miracle.  When I saw my sweet Maddie 6 hours later, she was in ICU with every tube imaginable connected to her, but I saw her right arm, and about 20 minutes later I heard her sweet voice, and I knew that she was going to be ok.

Eight days later, when she was discharged from the hospital, and we began our two hour drive home to Turlock, California.  We were an hour and half away from home, and I received a phone call from her oncologist at UCSF with more devastating news.  The pathology report had come back on the tumor and it showed a very aggressive cancer which indicated that Maddie would need to have chemo and radiation.  They gave her a "small" break after her "big surgery" of one month, before she had surgery to insert a port into her chest, and she began chemo that same day, September 6, 2011.

This is when our second miracle occurred.  We were referred to Family House and they became our second home for the next 6 months.  I say "they" because the people of family house made us feel as though we were home.  The first person we met was Kara.  She did our orientation and had nothing but a smile on her face the whole time!!  She was our first contact in our "new home".  Subsequently, meeting everyone else, John, Joe, Greg, Amy and now Karen,  was amazing!!  Family House became our home, and the people who work there, and the families that stay there are who made that happen.

We needed that miracle because Maddie and I were separated from the other children for the majority of 6 months.  It was very difficult on our our little family.  The staff was so consistent through support, from activities for Maddie, everything they provided in the house, and even just basic conversations, or simple smiles and hugs that helped us get through our day.  They were always encouraging us and always there for us when we needed them the most!  They MADE Family House a home for us, not just a house.

Our third miracle came when the Doctor declared that Maddie was cancer free on February 13, 2012.  She then had her port removed on Valentine's Day.   The only thing that was bittersweet about that news, was that we had to go to our real home.  Of course we WANTED to go home, to reunite with the other kids, but leaving Family House was so hard.  They were by our side through the darkest time in our lives and we had to leave them.

Next week it will be 2 years since Madison was declared "Cancer Free".  She is 15 years old now and thriving in school, actually in all aspects of her life.  We have been given the opportunity to be able to stay at Family House periodically over the past two years for her check ups that will continue for 3 more years, regularly.  It feels good when we get to "go home", and know that we will be welcomed and loved by all our "family" there.

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