How I Told Everyone About My Breast cAncer...

I have copied and pasted my post on Braden's Caring Bridge Site from February 17, 2010. 

It's the post in which I told everyone I had breast cancer.

I didn't have the energy to call everyone. I did send an email to my closest friends the night before the post. The only call I made was to one of my brothers and I asked him to call my dad. I just couldn't do it.  Everyone found out at the same time, with a handful of exceptions. Not really something I'm proud of, but it is what I had the energy to do.

I remember being mad, just mad...and so worried about how I was going to find time to go to my appointments while Braden was fighting for his life and had a less than 10% chance of survival.  I didn't give a crap about MY cancer, my only heartache and fear was for HIS cancer!

I knew how long and drawn out this process was, and I didn't want to miss a minute with Braden because we were sure he was going to die. I knew I would be in the hospital a lot but I was determined to get up and keep going so I didn't miss a single minute longer than I had to miss!

I was looking through my CB posts tonight and found this one...I hadn't planned on finding it, it just appeared.

I thought it would be an interesting one to share with you!!

We initially thought nodes were not involved, a couple of days after my mastectomy, we learned they were involved so I had a second surgery to remove more lymphnodes. That earned me chemotherapy, a lymphodema risk, and the loss of my long hair. That was what was the hardest for me. Otherwise, GAME ON!!!

It's hard to believe this was three years ago, it seems like yesterday...

...and at the same time, it seems like a millions years ago.

I still stand by my words, focus on Braden and do not blame God. He didn't give EITHER of us cAncer!!

Hugs! :)

Hi Army,
I know many of you worry when I post earlier than I had planned but everything is okay with Braden. I do have news for you though and I thought it might be better absorbed tonight when many of you are at home rather than tomorrow at work. It probably just easier to read it when you have more time.

Five days before we left for Braden’s second MIBG in Philly (beginning of January) I found a lump in my right breast. I went to see my OB before we left, who also felt it. We began all of the testing once we returned from Philly. This Monday, I got the call that the biopsy results were in and it was a malignant mass. It is a stage 1, grade 2, invasive ductal carcinoma. The pathologies came back the day we met with the breast surgeon and it was relatively good news. For those of you who have gone through breast cancer or know someone who has, this tumor is receptive to estrogen and progesterone, and the HER2-neu is negative (level was positive one). The ki67 level was 9% and they want it to be less than 10%. If you are like me and really wouldn’t know what those meant before now, this website was very helpful to me in understanding what this stuff really is.http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_breast_cancer_diagnosed_5.asp
if you are interested in more info. The bottom line is that the pathologies were favorable for a good prognosis.
I have elected to have a double mastectomy. We don’t think there is cancer in the left breast yet but I do not want to take a chance of developing it later on in life. Once you have breast cancer in one breast, you have an increased chance of getting it in the other one. I will have an MRI next week to help us confirm that the left breast looks okay and get more information about the lymphnodes. Right now we do not believe they look like they have cancer in them. The MRI will tell us more and when they do the surgery they will do a sentinel node biopsy to find out for certain. If you want to pray for something specifically, pray it is not in the nodes. I stand a better chance of not needing chemo if it’s not there. I’m not afraid of chemo but you know as well as I do that I would FAR rather spend my time with Braden and Zach right now than hooked up to an IV pole. We still do not know how long Braden has left and I don’t want to miss a minute. We will figure out what other treatments I need post surgery and with additional genetics information I will be getting as well.

I will meet with a genetic counselor in the hope we can learn other information through testing that will help determine treatment after surgery and whether or not this could be something that the boys could get later. Yes, males can get breast cancer. I do not have a history of breast cancer in my family but I could be the first to start the chain. I will meet with the plastic surgeon and genetic counselor the day after we return from Philly. We think surgery will be in mid to late March. I am aggressively going after this cancer! I am determined to win this battle! I have HAD it with cancer!

Who knows why these things happen. I’ve seen a lot of people put themselves through endless weeks and months of agony wondering why things happen. The truth is, I can ask that question but I’m not going to get an answer in this lifetime so it’s pretty much wasted energy to even wonder. I prefer to focus on enjoying EVERY moment we have today and letting the big questions/decisions be handled by God. I am NOT scared of this cancer. I have spent 2 years terrified for Braden and I’m going to stick with that and continue to be terrified for Braden but THIS cancer does not scare me. It’s tough to explain but when you are told you son who has only lived for five years (2 of those years being poked and prodded, having chemo/transplant/radiation, numerous surgeries and procedures and done to him) now has a relapsing, refractory disease for which there is no known cure, this just doesn’t seem that bad. It is certainly not a preferred diagnosis or future but the word the describes how I feel about things right now is simply determined. I am going to beat this cancer and it is going to be sorry it EVER messed with momma bear.

So how can the army help? First of all, please try to not be angry at God. This is not His work!! Performing miracles like having Braden Hofen with us today, feeling good and acting like a little boy should because he feels well enough to do it IS His work! We have SO MANY BLESSINGS! I know many of you will be angry but I am asking you to instead look at the glorious miracle God has given us. What I have is very beatable! Braden’s is not very beatable but he is STILL HERE! All in all…not bad!! So be thankful for us, appreciate life with us and celebrate each moment. I knew good and well that this was the likely diagnosis when I wrote the post about Braden’s Race on April 18. I was not kidding when I said that I want us to all celebrate together--even if you can’t be here for the event that day--we need to celebrate together. Yup--there’s bad stuff, yup--we are getting plenty BUT no matter what, we are thankful for what we have TODAY! I have said all along that none of us knows how much time we have--LIVE IT!!!!!!!!!!! Take detours and celebrate!! KEEP HOPING AND PRAYING FOR BRADEN! When we go back to Philly on March 2-3, we simply have to get good news again or we are done. We need to focus on that right now--it’s the priority--FOCUS ON BRADEN!! I believe in Braden and I believe in the power of thoughts and prayers and we have GOT to continue ours for him. Please keep spreading the word about Braden and continue to believe in him and in miracles!! I learned how to be brave and how to fight from my 5 year old, I also learned how to live every moment (even the cruddy ones) with joy and gratitude in my heart! We can do this too army--we can!!

Much love to you all!
Deliece

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!

DAMN!!!

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!!!

The Club...

Nope...not the fun club where you get a few brews and dance...

The exact opposite.

The cAncer club, specifically, the mother of a child with cAncer club.

NOT a club you want to welcome in new members, but it happens every day.

46 every school day.

This past week, many children that I have a personal connection to through others in this world have been diagnosed.

My heart is so heavy for them. I don't want them in the club, I want this to be an exclusive club with no new members. In fact, I want to END the club.  We are fighting to stop membership through our foundation, but we are not there.

I've thought about those mommies so much this week. The initiation process into this club is a horrible one.

You notice something isn't right (maybe you have been noticing something wasn't right...that was the case for us..I'll post about Braden's diagnosis this week) and you take your child to the doctor...

and you see the look of "oh crap!" on the doctor's face when he/she realizes what you are likely dealing with.

You know...in your heart your know that whatever it is the doctor ISN'T saying is something you do not WANT him/her to say.

You close your eyes and pretend that maybe that wasn't what you just read from the doctor..you convince yourself you are being too sensitive and you don't really "know" anything yet...

but you know.

A parent's heart always knows.

The real answer doesn't come right away. It takes testing and horrible, painful pokes and prods and scans...

And all the while you are telling yourself that they are going to come back and tell you it's a virus or something relativey simple like that.

cAncer happens to other children but certainly it wouldn't happen to YOUR child...they have to be wrong and there's a far simpler explanation.

Then the word slams into your heart while the doctor gives you the diagnosis.

You spend the first few days telling yourself that you know it's real BUT it can't be real and that there must be a mistake of some sort...and you wait and watch for them to come back in and tell you there was some sort of mixup in the lab or patient files got changed or anything that doesn't mean your child has cAncer.

You look at your child's eyes and you see the same child you played with at the park hours earlier, the same child who wants to still play, the same child who repeatedly asks when you can go home because they are tired of being at the hospital.

You wonder how the hell you are going to do this. How the hell can YOUR child have cAncer?

This is your BABY...

...and you can't fix it.

When your child falls and gets a scrape or cut, you can fix it. When they a "regular" illness, you take care of them and you fix it.

You cannot help your child with this one. You have to rely on others, who are telling you that this may be something even THEY can't fix, to try.

You build a wall and you bring your inner-most circle into that wall and you shut out the rest of the world.

It's not to be mean...it's because you can only deal with so much and as much as people want to be helpful and wonderful, you just can't deal with the outside world when your heart is broken into a million pieces and you are more frightened than you have ever been in your entire life.

You can't change a single damn thing. You are powerless against it.

At that point, acceptance begins and each parent reacts differently.  NO reaction is a bad reaction and no reaction is wrong, they are all just different!

Some parents need to yield to the doctor's wisdom and recommendations and simply hold onto their child and hope.

Others fight and question anything and everything.

And most are somewhere in the middle.

Your friends handle things differently as well. Again, none of the reactions wrong, just different.

Some of your closest family and friends go missing.  I think it's because they just can't deal with it, it's too hard for them.  I don't believe it's because they don't care, although, I will confess that it feels that way very much.

Then there are friends, some that you don't even know and have never met, that reach out with grand gestures to let you know they are hoping and praying and they help you in ways you didn't even know you needed the help.

Most are somewhere in the middle.

Every single thing in your life changes overnight. NOTHING is the same and you have a feeling that it will never return to being that "normal" again.

You are right.

It won't.

You and your family and your friendships and your world are completely changed.

It's not a change you chose to make, and it's not a change you can control.

You fear the word, "future" because yours is so very unknown to the level of "will my child live".

You don't feel jealousy of those who have your old "normal" but you yearn to have that normal back.

You reflect on what once was your life and how you thought little things were huge deals.

You learn.

You love.

You redefine.

You fight.

You cry.

You ache.

You curse.

You fume.

You stew.

You believe.

You TRUST.

You have FAITH.

AND...

You HOPE!

Praying for all of the newest members in the club.

And praying that we end membership, soon.

Some of you may be wondering, so what should you do and say and what should you not do and say when you know a child who is diagnosed with cancer.  I can't speak for everyone, but tomorrow I will share with you a few thoughts about some AMAZINGLY helpful things people did to reach out to support us that truly helped!