Thursday, February 14, 2013

The Diagnosis, Part 2...

Right after we found out Braden had neuroblastoma, we began calling friends and family to let them know.

Without a doubt, the hardest phone call I had to make was to Braden and Zach's babysitter, Shawna.

Shawna was a second mom to my boys, they spent more hours with her than they did with me because I was working all day long and going back to work about 2 evenings per week.

Shawna with Braden
I remember it like it was yesterday, I was sitting in the lobby at the hospital telling her about the diagnosis. We both held it together pretty well on the phone but I suspect she did the same as I did once I hung up. I completely lost it.  I could feel her heart and her pain and it was so hard. We both tried to stay positive but it was really hard. I love that lady and her family so much!

The morning after we heard Braden had neuroblastoma, we were transferred to 4Hensen which is the Oncology floor at Children's Mercy in Kansas City.

I didn't want to go and I remember telling one of my friends that I was going to have to prepare myself to see kids with bald heads and sad faces.

I was wrong.

Yes, I saw sick kids with bald heads, but they were skating down the hallways on their IV poles, and racing on pedal tractors.  One of the little sweeties who stole my heart was Chelsea. Chelsea would come to our door and peek in and if it was open, she came on in and that girl's smile made my day!! One day when the door was shut because Braden was in isolation she was outside the door grinning and smiling with her hands on the window and she licked the window.  I laughed SO hard! It was so nice to laugh!

I stayed with Braden every night for his first 30 day stay. When I was at the hospital, I never left his room and rarely his bed as he wanted me to sit with him and snuggle. One of his hands had to be touching me all the time! And I didn't mind at all!!

Occasionally, I would sneak home to take a quick shower while Brian stayed with Braden but I spent every night with him.About a year later, I finally peeked into the parent room because I was curious. :) I never left his side until one night while I was talking to four year old Zach on the phone.  Zach said, "Mom, I think dad would come down and stay with Braden if you wanted to come spend the night with me!"

Oh that stung my heart.  He was right. So at some point after a couple of rounds, I went home and slept in the same house as Zach. cAncer had split our family into two parts. Braden and me at the hospital and Brian and Zach in the outside world visiting the hospital. The hospital was home to Braden and me.

All you want is for things to be "normal" again. You want your child to not have a central line with tubes hanging from his chest, you want him to not have the pain and side effects of chemo, you want him to play outside, you want him to be able to GO outside, you want to be able to hold your other child each night and tuck him into bed. You want to make your own bed, shower in your own shower, pick up the million toys your kids have strewn all over the house, be able to come and go as you please, fuss about spilled milk, wonder what you are cooking for supper, go to the grocery store, make your bed, clean your bathrooms, vaccum your carpet, fold your laundry, and to not have to think and worry all day and all night long.

It's tough to hear people talk about how their child spilled their spaghetti all over the kitchen and it was awful.  I would have given my life to have that for one more day with my family instead of what we were doing.

Our world did a complete 180. We unexpectedly went from two incomes to one overnight. Our family of four was split in two. My career was halted and I LOVED what I did for a living!  Some of the people I loved very much turned their backs because it was hard.

And, worst of ALL, we were given a 30% chance of survival for Braden.

Miranda had died already and I couldn't fathom losing Braden too. I kept picturing visiting two graves, having another funeral for one of my babies, and living with empty arms again!

This could NOT be happening! Why would God do this!?? I had been faithful and I trusted Him!

It was after we moved onto 4H and I looked around at the other faces on the floor, that I realized...

...this is NOT from God. GOD DID NOT DO THIS!!

The God I believe in does not "give" cancer to anyone, especially children.

To me, this is the work of the other guy.  Only that guy could be this ugly and awful.  Childhood cAncer is pure evil so it must be FROM evil! My God would NOT do this!

I believe that God is our salvation during this though. He was with us every moment trying to protect Braden.

My hope was that Braden would not have to go to Heaven to be cured like Miranda had.

Braden held his arm above his head most of the time to relieve the pressure of the massive tumor and he had a hard time opening his right eye the whole way.

After scans and a biopsy, we learned that Braden's disease was not confined to his torso, it was also in his pelvis, femur, various other leg bones, skull, and bone marrow. It was stage IV and high risk.

When Dr. Shore came in and did his diagnosis speech, it took 2.5 hours because I questioned everything he said. He was very blunt and honest and I liked that part. I didn't mince words either. The first thing he said after he told us all about Braden's disease was that we shouldn't blame ourselves for the missed diagnosis.

Momma Bear lit up! I told him that I didn't blame ME, I blamed all of the DOCTORS and then I told him part 1 of this diagnosis. He was speechless.

And out of that conversation, the hospital began using Braden's story as a teaching example so it wouldn't happen again.

Dr. Shore once asked me if it helped to know that they were using this as a hospital teaching example. I told him that I was thankful but no. I didn't help. It gave me hope for others but it didn't help me with Braden's missed diagnosis.

Neuroblastoma is 80% curable when found at stage I or II...30% is what he was given because it wasn't diagnosed when it was stage I or II in October!


I'm not that good of a person and I'm not that noble.

After Braden's biopsy, he developed a staph infection from the surgery (MRSA) and salmonella which appeared after his counts went down. He had an allergic reaction to the Vancomyacin used to treat his MRSA, and he had an allergic reaction to the betadine and dressings from surgery. He writhed and ripped at his skin because he was so itchy.  We had to rub his skin 24/7 to keep him from breaking it open.

And this was all before he even started chemo!  I'll tell you about that another day, but it landed us in the PICU with the belief that he was bleeding out.

An NG tube was put in to try to give him some nutrition. I held my breath and defended that tube 24/7 because I was sure he would pull it out with the autism.

The reality began to sink in. 

And it sucked.

There was nothing I could do about it, and I'm a complete control freak!!

I just wanted to wake up from this nightmare.

I couldn't. This was now our life.

It is the life of too many!! 46 families have this day every single school day.  And 7 families say goodbye to their babies who earn their angel wings...every school day.

It's too many. It has to stop!!

With HOPE and work, it will!!

People often ask what things are helpful to do and tell families after their child has been diagnosed. We had an amazing support sytem of friends who knew exactly what we needed when I didn't. Here are a few that were extremely helpful things they did for us:

PRAY and share the story so others can pray!

Email, write messages on blogs, send cards, just let us know you care! That is your connection to the outside world and you have NO IDEA how much it lifts your spirits and inspires you to keep fighting!!

Do NOT disappear, even if it's hard for you, if you want to remain in the family's lives! I lost many friends and family relationships because people just disappeared. Things don't "reset" after treatment. You change and if friends and family are not there to support and adapt, you don't have the same relationship.

Love us, even on our bad days.  And don't judge! We may not make the same choices you would, it's our child, support us and be positive. Remember the golden rule! :)

And I'll just throw this one in, please don't send us crazy fads that are going to "cure cancer" like eating asparagus.  That is insulting to us and not helpful.

Start a Meal Calendar! Meals were SUCH a help for Zach and Braden at home

House Cleaning: a group of friends paid for a housekeeper to come 2x a month...what a blessing!! This was INCREDIBLY helpful!

Take siblings who are at home on special playdates. That made a HUGE difference to Zach and it allowed me to have peace of mind knowing that he was being cared for in such a special way by so many loving,kind hearts!!

Make sure it's okay to visit before you do so, hospital time is crazy and there are times you just don't want to have visitors. You still want to hear from and talk to people, but there's a lot going on and you have to take care of your child. Germs are VERY bad and I wouldn't let visitors in for that reason. Your immune system is very compromised and one person with the sniffles could land you in the PICU.

And most of all...

...have faith and believe!!

Miracles happen!! :)

With HOPE!!!