Wednesday, April 23, 2014

The Cheetah, The Elephant, and Prom...

Last night I couldn't sleep...worried about the results of the bone marrow test that will show if Braden's cancer is gone after his transplant. If it's not, we are in big trouble...so it's one of those things that will keep you up late at night.

I was watching the Animal Planet (seriously) and a show about African Cats came on, it was narrated by Samuel Jackson.

(every time I hear his voice is snicker because all I can think of is him narrating the book "Go The "F" To Sleep"...)  Giggling now...

The baby cubs of the lionesses and the momma cheetah were SO adorable. I just wanted to snuggle them (perhaps not the best idea but they were just so huggable)  :)


The cheetah cubs are playing in the tall grass when two male cheetah brothers approached. Samuel warned us that male cheetahs often will kill small cubs.  I wanted to turn it off, but I kept watching...hoping they would be okay.

The momma defended her babies but they got around her and started attacking her babies.

I was literally standing in front of the television, pointing my finger and telling the male cheetahs to stop it right now...and telling the babies to run..hide...and where was momma??

It looked like it was over for the babies when a HUGE momma elephant came stomping in, swinging her trunk and bellowing at the brother cheetahs to scare them away.

Now I was clapping, crying, and yelling, "Oh you GO Momma Elephant!! Kick their asses!"

After the cheetahs ran for their lives, the elephant just walked away and the babies were safe and sound...and so was the momma.

Whew...

I started thinking about how we should all be more like the momma elephant...willing to step in and help someone other than our family and friends just because they needed our assistance.

Then I remembered the Prom party that was going on when we checked into a hotel the day Braden was dismissed from the hospital's bone marrow transplant unit.  Brian was bringing the luggage into the room and he laughed and said there was a HUGE prom party in the room next to us, so it might be a long night.

We had heard them...I just didn't know it was high school kids and a prom party.

By about 8:30, it was in full swing and crazy loud. Grandpa Zach (our 11 year old) was quite perturbed and wanted to go next door and tell them to be more respectful and be quiet so people could "think".

I laughed and wished I could record it and play it for him in about 6 years for his reflection purposes. :)

They weren't bad, just loud and silly and then about 10:00, they all disappeared. Apparently, going to the actual prom itself.

I braced myself for their return and the "After Prom" party that was likely coming later that night until the wee hours of the morning.

About midnight, I heard two loud voices in the hallway and thought, "here we go..."

The boy was yelling, "Why the "F" are you crying!! QUIT crying" and the girl was sobbing yelling that he had ruined her prom night. After a long argument in the hallway, they went into the room and continued the yelling there.

Ah...young love (bats eyelashes)


I was bracing the the rest of the gang to join them and trying to go to sleep but then the girl yelled, "Why did you hit me so hard?"

That got my attention.

I began listening fairly intently (although I didn't need to try to hear them because every word they were saying was crystal clear and extremely loud). It was a 50-50 yell fest but the boy was very ugly and demeaning in how he was treating the girl. And she was crying profusely in between her verbal assaults, but she was dishing out as well. That went on for at least 30-45 minutes and I just kept listening thinking if I heard him lay hand on her or if she sounded like she was being hurt, I was going over.

They continued and at one point I heard her say "You ruined my sex life!" to which he replied "I ruined YOUR sex life?"

I shuddered and thought...

 "T.....M.....I.....Please stop!!!!"

Then I heard her say, "ouch!"

That's all it took. I sprang out of bed and told Brian was was going next door because I was worried the guy was hitting his girlfriend and I was out the door before Brian could even get out of bed.

All I could think was that if this was MY daughter, what would I want someone to do.

And part of me wanted to get her parents on the phone so I could yell at them and ask them what the hell they were thinking renting a room for the kids to have a pre-prom party in and for her and her boyfriend to spend the night.   Maybe Zach gets that whole "disapproving grandpa attitude from someone...gulp!"



I knocked (loudly) on the door. It immediately went silent inside their room. Then footsteps...bumping into the door...whispers of "it's some lady in pajamas"...and finally the door opened.

The teeny tiny teenage girl stood there in her teenier tinier dress with dried mascara that had run down her cheeks. She said, "yes?"

She looked fine..no red marks on her (and trust me, I could see most of her skin), her hair wasn't messed up and other than the mascara mess she looked fine, and that bold girl who had been screaming at her boyfriend instantly became a little girl who was scared she was in trouble.

The dude was no where to be seen but I knew he was there, hiding so I wouldn't know he was there. Apparently he has not been paying attention in school and he didn't know that sound (especially YELLING) travels. LOL!

I asked her if she was okay and she looked at me with eyes that said, "why in the world would you ask THAT" and said of course she was. I was relieved, but I wanted the dude to know that I knew exactly what was going on in the event he decided to do anything after I left.

I realized the guy wasn't going to come to the door (chicken) so I very loudly said, "I can hear EVERYTHING! I heard you asking him why he hit you so hard, I heard you say ouch. I hear him yelling at you, calling you horrible names (I told her exactly what he had called her), and both of you throwing the f-bomb at each other every other word.  And I came over because I wanted to make sure you were okay and not being hurt."

She assured me that she was fine and not hurt and apologized profusely for being so loud.  I said I wanted to see the dude and she just froze in the doorway. It was obvious he wasn't coming into the light (because again he was NOT there...duh me) so I said, "You need to cool it buddy! You need to stop now because I will come back!"

Total silence.

She apologized again and I walked back to our room. Things were much quieter but I could still hear the "talking" and I stayed up until VERY early in the morning to make sure that she was okay.

The next day, I was mad at myself for not doing more. I had been like Ms. Elephant. I simply had broken up the fight.

I had not changed the world. I had not educated anyone, I had not helped them resolve whatever they were fighting about, I had not taught them a single thing, I hadn't told the girl to stay the hell away from that guy because he was a jerk and she should NEVER allow anyone to treat her like that...I had merely broken up the argument for that night and made it known that "mom" was listening and would be back if they did it again.

Just like I do with my own sons when they argue over whose turn it is on the PlayStation.

I was disappointed with myself for not doing more.

But...I did a little.

Just like Ms. Elephant...I did something to change the path the rest of the evening was heading down.

What a different world it would be if we all did a little.  If we didn't just walk past things and we stepped up to offer a hand to someone who was hurting. I didn't do anything huge and awesome...but I was able to settle with my conscience because I had done something.

I'm blessed to be surrounded by people who do something all the time. Friends who just step up to help because it's the right thing to do. And I realized that this is bey design. I found that "post 40", I have chosen to surround myself with those types of people and let the others who are not like Momma Elephant go in their own direction, without me.

I'm fortunate to be a part of an entire herd of "Ms. Elephants".


Be like Ms. Elephant and live among a herd of them.

I promise your life will be blessed as a result!

And I have now added "snuggle a baby tiger or cheetah" to my bucket list.








Monday, April 14, 2014

Hate...

Hate is the only four letter word I refuse to use.

Ever.

Others flow, far to freely, on too many occasions.

So why draw the line at the word hate?  What's so bad about that particular word?

Today, Braden had a surgical procedure to remove his Hickman central line...it is a line that ran through his veins to deliver his chemotherapy and then drugs to counteract the damage that the chemo did to his body.

It is a rather medieval looking device with long tubes sticking out of his chest that have caps on them to connect to the tubes from the drugs so they can be pumped through his body.

It's nice that it's gone..it means he is getting better and no longer needs it. We may actually break out of the bone marrow transplant unit at the end of the week,

a full month earlier than they predicted his earliest dismissal day from the hospital would happen.

TAKE THAT cANCER!



They also did a bone marrow aspirate to check his bone marrow for any signs of remaining MDS cells, that's the pre-leukemia Braden has that was caused by the treatments to save his life from relapsing neuroblastoma.

His body is now fueled by his 11 year old brother's donated bone marrow cells, and he is kicking butt and taking names with this bone marrow transplant,

But now it gets real. Now we wait for two days to find out if the treatment he just went through has killed the cancer cells....

...and my stomach is in knots because if it's not gone...

...I can't even type it,

Let alone think it.

It simply has to be gone.

Braden has been fighting cancer for 6.5 years...

and he's 9 years old.

He has no idea what life is like when you are not in continual treatment. He has autism and doesn't even know he has cancer, so he just fights...

and lives life to the fullest every day with joy and love.



As he was still in a deep sleep from sedation, he had one single tear dripping from his eye and it broke my heart in a million pieces.

Braden never cries about his cancer, he hasn't cried ONCE during his bone marrow transplant...to the contrary...

he has been shooting basketball hoops, playing, and painting beautiful pictures.

But it does wear on him....and that tear showed it.



I often hear people tell me how they hate cancer because of what it has done to them or to someone they love.

And this tear completely ripped my heart out. Just another time cancer was hurting my baby.

But I will never say that I hate cancer.

The reason is simple.

Hate comes from an ugly, evil place.

Hate is the reason that a grandfather, his 14 year old grandson, and a woman were just shot and killed in my hometown.

A fourteen year old beautiful boy who had his entire life ahead of him. A grandfather who was lovingly taking him to try out to be a part of a singing group, a dream of his. A woman who was making her weekly visit to her mother at a retirement village.

Gunned down randomly by a crazy man yelling "Heil Hitler" as they placed him in the police car.

You see, they were killed at two different Jewish locations, likely because he believed they were Jewish.

THAT is hate...

THAT is evil...

And that is simply horrific...

and as much as I actively dislike what cancer has done to our son and our family, I simply REFUSE to allow this disease to make me hate.

I refuse allow cancer to conquer me.

I refuse to allow it to make me hate.

cANCER, evil and hatred will never receive my soul.

As much as I would have chosen another path for our son, it is the path he has had to walk. I would give my life to change that for him, but I cannot.

cANCER has blessed us in so many ways. We have been shown how much love, support, compassion and true selflessness is in the world. People have shown us all of that with open arms. As they did when the community showed up to welcome Zach home after he arrived from donating his bone marrow to Braden to try to save his life.



THAT is love.

THAT is goodness.

So in a very twisted turn of events, cANCER has brought beauty and grace to our lives by showing us exactly how much more good there is in the world than evil.

My heart breaks because of our son's one single tear dripping from his eye.

I allow myself to feel sadness and fear because I am human,

but I get back up and I fight every single day because I refuse to allow hate in my life in any way shape or form.

Hate is the worst four letter word in the world because it consumes souls and allows evil to reign and spread.

We conquer hatred through loving acts and words, and through faith.

God has Braden in His hands and I trust Him to care for him and that far surpasses hatred and evil.

"Lord, make me an instrument of thy peace. Where there is hatred, let me sow love."

Amen.












Monday, April 7, 2014

Heroes and HOPE...

On March 31, 2014, our ten year old son,  Zachary, arrived at the Children's Hospital of Philadelphia at about 5:30 am.

First, dad and Zach stopped by his little brother Braden's room in the bone marrow transplant unit. Braden and I were able to give them hugs, kisses, and tell Zach good luck.

Zach and daddy walked down the hallway toward the surgical center.

Zach was carrying more than his backpack filled with his blanket and i-pod touch.

He also carried with him HOPE!

Hope that his cells would carry the cure to a secondary leukemia that his little brother had been diagnosed with that was caused by the treatments to put him in a remission from his first two cancer battles with neuroblastoma.

His odds of five year survival after his neuroblastoma relapsed were less than 10%. He was in year 3 of that battle and his neuroblastoma remained in remission.

As horrific as those odds were, this new secondary leukemia was even worse. His teams in Philly and Kansas City had never seen a child beat this particular form of MDS after battling neuroblastoma.

Ever.

A bone marrow transplant was Braden's only HOPE for a cure, and an end to cancer forever. Braden's bone marrow would be killed off by high dose chemotherapy and then donor cells would be transfused into his body to try to replace his bone marrow with healthy cells that could take over and kill any remaining cells the chemo missed, and keep a vigilant watch in his body and destroy any future cancer invaders.

After an exhausting search for a bone marrow donor, there was only one match. And that match was a perfect match.

His ten year old brother, Zach.

We talked to Zach about his donation and we were very honest with him about what could happen. When a stranger donates cells, they do not meet their match until one year post transplant.

There is a very good reason.

The odds are very high that the transplant won't work and it's really tough for donors to know that their cells failed to save the person's life.

Zach is well aware of this.  He knows that his cells may not save Braden but that his cells are the only chance Braden has to live.

Without those cells, Braden would die.

And that is a lot to deal with as a ten year old brother.

Zach is very frightened of all things medical...especially needles. When he had his flu shot this year, it took several nurses and a long time. At one point he said, "Everybody just hold on for a minute! I need to breathe because I have a very big problem with large needles near my body"!

Zach faced his fears of needles and procedures. He faced his fears about "what if" and he donated his cells during a 2.5 hour procedure in which the oncologist harvested about 837 ml of bone marrow cells from Zach's back/hip.

It took about 50-75 cores of bone drilled from his body to do that. It is very painful after the procedure but Zach was tough.

After recover, Zach was able to come back to Braden's room and they were side by side while the cells were transfused into Braden's body.  A hospital clergy said a prayer and blessed the cells as they went in and after Zach said,

"that prayer proved that I was chosen for this by God mom!"

It takes a very special person to be chosen by God to try to save your brother's life. We don't know if it will work, but the most important thing is that Zach was willing to try.

Selfless...

loving...

HOPEFUL.

The night before the procedure, we named Zach's cells "Z-Force" because Zach is into all things military and his cells are like a Special Ops Battalion going into destroy the bad cells, take over, and keep watch for a lifetime and immediately destroy any insurgents. A pretty big job for any Special Ops unit...but Zach is special because his cells are super charged with LOVE and HOPE!

As the cells were transfused into Braden's body, someone noticed that the tubes actually made a heart shape.

An unplanned sign.

We expected Zach's cells to begin to engraft in Braden's body around 13-14 days after the transfusion. Today is day 7...

and they are already starting to engraft.

We still have a very long road ahead...they must engraft fully, remain engrafted, not cause extremely detrimental graft vs host disease, and keep the cancer away forever...

a long road indeed...

but it is possible...

and we are hopeful...

and I stand in awe of my two brave sons.

One the donor, one the recipient...

a perfect match.

HOPE!  For both of my heroes!






Saturday, March 29, 2014

Courage is contagious....

For 6 years, I have watched our now 9 year old son, battle cancer.

First, neuroblastoma with 30% odds for 5 year survival, then a relapse with a less than 10% chance of five year survival (of which is 3 years and 2 months into and still in remission) and now secondary leukemia caused by the treatments he has had to save his life. Our teams in Philly and KC have never known a child who has survived this particular type of MDS after neuroblastoma. 

Not one.

We have been faced with more decisions about which path to walk down for treatment, or no treatment, more times than I can count. 

More life/death decision than I care to remember. 

Seriously, you have to choose whether to fight for your child's life or resign from attacking cancer and appreciate the time you have left.

Not an easy choice to make.

We have always followed Braden's lead. He has never, once waivered in his fight. 

Braden has autism so he can't tell us with his words, but he shows us. 

He wakes up happy and joyful every day, and he is silly even the cruddy days that he feels horrible because of his treatments. 



His bad days are still full of life, gratitude, and love.

He just wants to play and be with his family and friends. He loves everyone he meets, accepts them, appreciates them, and wants to play with them.

That's an attitude we should all adopt.

Braden doesn't know life isn't supposed to be filled with pokes, poison, cores of your bone marrow being drilled out repeatedly, medicines, and managing the side effects of treatment.

So he just appreciates what he has, even if it isn't what most of us would consider to be "normal" or good.

And he is HAPPY about it!

As we sit in the hospital for a bone marrow transplant and he is getting high dose chemotherapy to kill all of his bone marrow so he can accept his perfectly matched ten year old brother's bone marrow, he remains happy and joyful...and he wants to play...

...basketball.




We have a hoop in the room and he seriously plays for hours a day.

He flirts with the nurses and has won them over. Just this morning, he was winking and smiling at his nurse and told her, "Hey you...I'm flirting!" :)

Yesterday morning, the first words out of his mouth when the nurse walked in were, "It sure is a lovely day today!"

Seriously, who does that while getting high dose chemo and feeling yucky?

I would be in the fetal position in a corner sucking my thumb crying.

Not Braden.

But what I didn't realize was how much courage is contagious.


Braden is like King Arthur and the land...as Braden goes, so go those around him...

especially mom.

I understand how horrible his odds are, 

I understand how impacted his body might be, if he survives,

I understand how it could change this quality of his life because we made the decision to fight,

I understand fear...

and worry.

I understand the bad stuff that he is blessed to not understand. 

But because Braden is brave, so am I.

His strength fuels my strength.

His will fuels my will.

His fight fuels my fight.

His HOPE fuels my HOPE!

And on this, the last day of his conditioning chemo, we will play basketball while he stops in between shots to double over in pain...

and then continues.

And I won't cry.

I will cheer, and clap for him. 

I will smile,

and have the courage to fight too.

God has this and our job is to remain courageous and trust.

cancer is not bigger than God,

and it is NOT bigger than Braden Hofen,

so I'm going to follow his lead and remain courageous...

thanks for sharing that inspirational gift my sweet Prince.

Mommy loves you!

Sunday, March 9, 2014

Faith...

Most of us have had to make choices that are very difficult.

Some of us have had to make choices that were impossible.

We have one of those impossible choices to make right now.

Braden's secondary cancer (mds leukemia) that was caused by the harsh treatments he endured to beat his first cancer (neuroblastoma) is going to kill him if we don't do a bone marrow transplant...and that could kill him. And if the transplant works and rids his body of the mds, his immune system that may be responsible for keeping any dormant neuroblastoma cells quiet may then allow the neuroblastoma to come back. And that would kill him. 

It's a choice in which, like so many parents of children with cancer, we have to make an impossible decision about life and death.  

Does he die after he's had the most amount of good quality time without further risky treatments, or do we risk things and hope to not kill him, shorten his life, or take away the quality of the time he has left with the risky treatments by fighting for a cure...

This beautiful,vibrant, happy boy.


We have been fighting this mds since he was diagnosed on July 8 and we were told that he had only several weeks to a few months to live. We had to make the choice to either do nothing and let him die then or try a chemotherapy that we inject into him at home for seven days, two to three shots a day every three weeks.

Every time we have been told Braden was going to die, we have take the option that gives him a chance to live. 

And we have faith that God will be there for us no matter what the result of the treatment.

Now we have to do something different for his mds. We have known this path isn't curative and would only buy us time and now we see signs that we need to proceed with transplant if Braden is going survive.

We have chosen the only path for treating his mds that allows him even a small chance of beating it all and surviving.  Braden will have a bone marrow transplant and we will hope that he survives it, it kills all the leukemia, his donor cells engraft, and the neuroblastoma stays quiet.

Imagine being at the top of a jagged cliff and knowing you are going to die very soon if you don't jump and take a chance at surviving.  You know that whatever way you jump, there are rocks surrounding you that are not going to give a safe landing.  There are just a few green, softer spots (and even those softer spots aren't particularly appealing). 


But WE are not going to jump.  

We have to throw our child off that cliff...

and we can't make the jump with him. 

We have to hope our aim somehow lands him in the exact right place at the exact right time so he will recover and survive. 

We know no matter what, he will not land unscathed, it's a matter of trying to choose the spot that will do the least amount of harm and give the most hope for recovery and survival.

We know transplant will cause harm and will have side effects that will last the rest of his life. We don't know how devastating and debilitating those side effects are going to be though. 

That is a lot to wrestle with in your heart and mind.

Imagine, for a minute, throwing your child off that cliff hoping to do the least amount of harm while giving him a chance.

Imagine being forced to make a choice like that with your child.

It sucks as much as you are thinking, especially when it's not a hypothetical question.

We can only hope, trust...

and have I have unending FAITH that God is there and will give us the right answer to our prayers...

even if it's not the answer we want.

That is a very hard thing to do.

God gives me peace and my hope, my faith and my trust are bigger than that jagged cliff. 

My God is greater than that cliff and His love surpasses all the danger and fear.





We are fighting like crazy to keep Braden here with us. Make no mistake...we are NOT ready to let him go!

I've held on to my faith since his terminal prognosis in July. And this past week, we learned some very unexpected news that made that teeny tiny glimmer of hope we have held onto just a little brighter.

The doctors told us that Braden is in a very unique situation and he has a few things going for him.  

And the words "a few things going for him" were unexpected and glorious to hear . 

First, his neuroblastoma has been in a second remission for three years. That is nearly unheard of with relapsing neuroblastoma.

Secondly, his mds is currently only affecting about 2% of his cells and because that is fewer cells to have to kill and it has responded to therapy. He began at about 20% of his cells so the chemo has been working. It is encouraging this the cancer responded to the chemo and it's better that he has less disease to fight with transplant.

Third, after 6 years of continuous cancer treatment, Braden's organ function is good. That's pretty amazing. He has a few treatment induced health issues but his organs are functioning in acceptable ways.

Then there's a huge positive. Braden has one and only one bone marrow match in the registry. And his bone marrow match is his ten year old brother, Zach.


That gives him a "related bone marrow donor". And it's a huge advantage.

There are multiple benefits to having a bone marrow donor that is a sibling, simply put it can make the engraftment process easier and cause less complications and side effects.

It only happens 25% of the time that a sibling is the match for a patient.

And on Friday, we learned that Zach is a FULL MATCH for Braden...and that is really good news.

Zach is excited to try to save his brother's life.

And we are blessed to have a ten year old who is brave enough to try. It may not work, his cells may not engraft and even if they do the rate for relapse of mds post transplant is extremely high, but knowing all of that, Zach is willing to try.

Zach is a pretty awesome kid!

So while we are standing on that cliff with really crappy choices to make, we have some new hope...

....all thanks to faith that God will guide Braden to a softer green spot on that jagged cliff.

Please hope with us and believe all things are possible!


“Never be afraid to trust an unknown future to a known God.” 

--Corrie ten Boom

Monday, March 3, 2014

To Infinity and Beyond...

In September, our school sent out this "Save The Date"...



I taped it to the back door along with Zach's fifth grade musical save the date.  I knew it was either going to be a very happy day on March 4 or a sad one. We thought Braden had only a few months left to live in September and March was a REALLY long time from then.

March 4 was going to be a day that Braden would be here to see...

or not.

I almost didn't put it up because I didn't want to risk that he would be an angel and I would have this stupid sign to take down as yet another reminder he was not here.

And while we are heading to transplant soon, tomorrow is his musical and he is going to be there.

TAKE THAT cANCER!!!

He gets to dress up as his favorite character from a movie...

and he chose Buzz Lightyear.

Ordinarily, I would have said no because I didn't want to buy a costume, but this musical is special, so I ordered a Buzz costume.



I think he looks pretty cute. :)

And he is really good at shouting, "TO INFINITY AND BEYOND!"

No, that's not part of the musical ;) but he's pretty darn cute when he wears it.



We also got his hair cut today and that was a tough moment because it will likely be his last haircut while he is 9 years old.

Once in transplant, he will lose his hair and then it will have to grow back.









IF we are super lucky, he might grow those beautiful curls back that he's gotten each time it's grown back from chemo. I LOVE the curls...

Even if Brian says it makes him look like a girl. :)

They are so sweet...





He even wore his Hulk costume for his haircut and showed the lady his "muscles" and gave her his best "Hulk SMASH!" impression. It was pretty precious!



Zach was very insistent that Braden should not wear his costume to the salon because it would be "embarassing" (he's going to middle school next year so he's preparing for that life change and more things are now "embarrassing".

Sigh...

But even Zach had to admit he was cute! :)

Tomorrow morning, my sweet baby boy walks out the door and goes to school for his musical performance and THAT is a victory.

cANCER gets too much time and too many memories from people who have it.

But, that's sort of the point...Braden has cANCER, cANCER doesn't have HIM...

and tomorrow we get another "W" in our column.

This 9 year old is kicking cancer's ass even though it keeps picking new battles.

And Braden is going to keep winning...

TO INFINITY AND BEYOND...

TAKE THAT cANCER!



Sunday, February 16, 2014

Trust....

A dear friend sent me a story several years ago about trust being similar to riding a tandem bike with God. He is steering the bike and we are on the back pedaling to keep the bike moving forward.  We have to trust that wherever God steers us is the place we are supposed to go, and we ought to enjoy the view along the way because He's "got" it.

Easy to say; hard to put into action.

I am a control freak and I leave little to chance...I am a "driver" not a "peddle pusher".

It requires trust to be able to peddle, and not steer. And that is not my strength.

Many people have told me "God only gives us what we can handle so he must really trust you" or "God gives his hardest battles to his strongest soldiers so God is showing you His trust".

I also hear people say they believe that God gives us trials so we can give ourselves completely to His will and trust Him with all of our heart.  He gives us these trials and hard times to teach us to come to His open arms to seek comfort and to trust in Him.

While all of these statements/ideas are supposed to be comforting and supportive, they are not.

What I hear in these messages is that some believe that God is giving us horrible things to test our faith and to give us the opportunity to trust Him completely. And that hurts my heart.

I just don't think it works that way with God.

(Perhaps it works that way with some humans, but not God)

When Braden was first diagnosed, I thought God had abandoned me. I assumed I was being punished or He was angry with me.

But, when I stepped onto the oncology floor for the first time and I looked into the eyes of the children battling cancer, I immediately knew that this was not something that God was responsible for...

...the God I believe in is loving,  kind and forgiving. NOT the giver of pain and suffering.

I think that's the "other guy's" specialty.

I had peace in my heart at that moment, and I have carried that peace with me ever since but my trust in God is often tested. This week has been a particularly tough one.

I started writing this blog while one of our sweet teenage friends was dying with Ewings Sarcoma.  Kori is now forever 18 and she was a fighter, a true fighter, with a heart as big as the entire universe.  She is a beautiful soul and she lives on here on Earth in so many ways,

but her parents can't hold her anymore.

They can't hug her, touch her, comfort her, and dream of her future.  Those things are lost and writing a blog about trust while holding that on your heart was tough for me to do, so I stopped and didn't finish writing it.

In the meantime, we were waiting for the results of a bone marrow biopsy for Braden and I didn't have a good feeling about what these results would say.  Angel whispers were telling me to be concerned.  His counts had been progressively getting lower and I was worried it was a sign of disease in his bone marrow making it hard for it to make healthy cells to grow.

Then there was the non-scientific sign. When Braden was in treatment, he needed me to be right beside him every minute with me touching him all the time.  I couldn't even get up to go to the bathroom without having a nurse sit with him while I hurried as fast as I could because he was crying out for me.

Every time, something has been going on with Braden and his cANCER has been progressing, Braden has needed to be touching me all night long while he sleeps.  And his arms, hand, or foot had been on me all night long for awhile.

I knew....I just knew his treatment induced leukemia was progressing. I couldn't even say it or make eye contact with those that asked me what my gut was telling me about the results.

We got the results of the biopsy and they were not what we wanted to hear. The treatment induced leukemia is progressing again.

Once again, his cancer cells had found a way to outsmart the chemotherapy we have been giving him to keep them quiet...and kill them.

Now he has to go into transplant which is terrifying. This marks the beginning of something, it will either result in his death or cure. The hospital teams we work with have never seen a child survive for 5 years after treatment induced mds following neuroblastoma.

Never.

They are leaders in the field and they have never seen it.

And I am not ready to go into transplant and start what the doctors believe is the beginning of saying goodbye to our son.

Each time I have been able to post something positive about Braden's cancer results, I often hear "God is Good!" in celebration.

Yes, He is.

But, He is good all the time.

Trust is knowing that He is good, kind, loving, and our grace and salvation even when the answer is not what we want it to be.  Period!

Trust is knowing that if the answer to our prayers is not what we asked for, or hoped for, or wanted, it is still the right answer.

When I don't receive the answer that I want, it doesn't mean my prayers weren't answered!

God knows and sees things that I cannot and he steers the bike accordingly.  I am called to trust Him to guide us to the right answer, not to my hope.

It's like when I prayed that God would take care of our daughter Miranda and keep her safe and comfortable even if I had to say goodbye to her because I wanted her to not be in pain because of my wish to keep her here. A few hours later, Miranda was with Him in Heaven and not on Earth suffering. Watching Miranda die in my arms was the hardest thing I have ever done, but it doesn't mean our prayers were not answered.

God saved her, just not the way I wanted her to be saved.  But it doesn't mean my prayers weren't answered and that He didn't wrap His loving arms around her and save her from evil.

Sometimes parents have to say no even when it hurts because they know more than their children about how things work. I think it's that way with God, but we can be spoiled brats because we want what we want when we want it. And I really wanted Miranda to be with us and I really want Braden to be with us.

I didn't get what I wanted with Miranda, and I may not get what I want with Braden and that crushes my soul completely. The sadness and fear I feel as a result of losing Miranda and possibly losing Braden is more than I could ever describe. It frightens and saddens me to the depths of my being.

But...I must trust God to save him just as I trusted God to save Miranda....no matter what the answer is.

God is in the business of loving and caring for us.  He loves Braden even more than we do, which is hard to imagine because we love him with every ounce of us.

He will save him whether it is on Earth or in Heaven, but for the record,  I'm going to fight like with everything I have to make his cure occur while on Earth. God gave us minds and free will to do something with them, and those two things are the reason he has remained with us for 6 years.

We aren't stopping now.

We have a glimmer of hope...it's just enough to give us the courage we need to fight.

When I went to bed on Valentines Day, the day we got the news the leukemia was progressing, I couldn't sleep so I did what I often do when I just need to hear from God. I closed my eyes, opened my bible, pointed to a spot on the page and then read.

And this is what I found:

     "Look to the Lord and strength
Seek his face always.

     Remember the wonders He has done
His miracles and the judgments he pronounced."
                                                       Psalm 105

I trust. And I know that God is bigger than cANCER.

TAKE THAT cANCER!