Relapsed Neuroblastoma Survivor...

January 26, 2011 Braden and I were in Philadelphia for scans.

His relapsed neuroblastoma had continued to defy a cure although scans every 3 months had shown that at times it was shrinking a little or at least staying stable.

The chemo he was currently on was wreaking havoc on his system and once again our oncologist in Kansas City was telling me that we needed to abandon this therapy he had been on for 8 months. The oncologist said that it was time to stop because the therapy was just too hard on his body. We were trying to qualify for another therapy but his platelets remained too low and he couldn't so we convinced our KC oncologist to reduce his chemo by 50% and we doubled the time interval between his doses in the hope of continuing the therapy and keeping his cancer at least stable.

We had several times before this that our KC oncologist had told us that we were at the end and we needed to accept our reality. And every time I had argued, advocated and powered through it, but this time I was beginning to wonder if he was right. However, I was able to buy enough time with him to get him to concede to one more round before Braden's scans on January 26.

We knew that the this scan was critical, to be honest, every scan is critical. If scans show that the cancer is stable, that's a win. If scans show that the cancer is getting smaller it's a victory but if it's growing, it's a different game entirely. And it's never a good thing.

Braden was six. 

We went in for scans and then headed to clinic to see Dr. Mosse. She is our oncologist in Philadelphia. 

We were experiencing "CHOP time" and had about an hour delay in trying to get in to get the results from scans. To top it off, the first person we saw in the waiting room was Dr. Mosse who came out to tell us hello. That never happens! She is always in the back and we don't see her until result time. She commented that he looked great which helped me a little bit. Surely, she would not have said that if things were worse.

We were eventually called back to the examination room and Dr. Mosse was with the fellow who was working with her. She smiled and said, "I'm just thrilled to be able to tell you that Braden's MIBG scan is completely normal". 

I just sat there and all I could eek out was, "I'm going to need for you to say that again." She did and then the tears started.

For his cancer that had not been cured in 18 months of the therapies post relapse to suddenly be cured with half the dose and double the time interval between his latest chemo cocktail (that he had been on for 8 months) to suddenly get it was remarkable.

Our conversation didn't end with advice to go home and enjoy our victory, instead I pressed for us to try to get antibody therapy for Braden now. I wanted to make sure we cleaned up any left over cells. I firmly believe that we need to treat neuroblastoma like a chronic disease because the cure rate is so low. We think we have it beat, but we don't so follow up therapies are critical when you have it "down". 

We were trying to get it for Braden enrolled in antibody therapy when we found the relapse which meant he couldn't receive it. However, because he was in cue, we were able to get a unique exception for him to receive it. At that time, it was not standard care for all children with neuroblastoma as it is currently. It is a therapy that can go in and clean up leftover cells that scans cannot see and I wanted it, badly.  Dr. Mosse made calls to the NIH and gained us the exception and we would start it a few weeks later. 

When Braden's neuroblastoma relapsed there was no known cure. Five years later, there is still no known cure and less than a 10% chance for five year survival.

Somehow, we have been blessed with those five years and today we can say Braden is a neuroblastoma survivor.  He still has 3 years left to go before he is a secondary leukemia survivor but we are going to celebrate today. 

We left the hospital and headed to the airport in Philly, but it had been snowing and the forecast called for a major storm. Because of that, I had kept our hotel room in the event we didn't get out that night. 90% of the time, we don't get home the same day we think we will when we travel to and from Philly...it's always something and the forecast was enough for me to think we were probably not going to make it out that night. 

The airport ended up closing about 30 minutes before our flight was scheduled to depart because of thundersnow. The unhappy travelers were most certainly just that, unhappy. But we kept smiling. Someone commented about how we sure seemed happy with the bad news and I, rather loudly, explained why and that no travel plan changes could change our happy faces that night. I heard far less grumbling after that, at least no grumbling close to us. 

We were lucky enough to be on the last shuttle that left the airport to the hotel where we watched the most beautiful snowstorm. Snow is one of Braden's most favorite things in the world and I'm still pretty sure that it was no coincidence that we got nearly two feet that same day. 

We have been blessed and lucky. No other child has traveled the therapy journey that Braden has traveled, he is completely unique.  I still don't know how or why and there is a great deal of guilt that comes from being able to kiss my son every day when so many mommies cannot.

Thank you all for keeping us in your thoughts and prayers along this journey. We still have bridges to cross and miles to travel and we will keep doing that, one step at a time.

With HOPE!

TAKE THAT cANCER!

Last Year's Plane Ride...

One year ago today, Braden then 9, Zach then 10, and me then 39+  boarded a plane to Philadelphia so Braden could have a bone marrow transplant for his secondary treatment-induced leukemia. His only hope of surviving was for Zach's bone marrow to be transplanted into his after we killed off his own bone marrow with high dose chemotherapy.

Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.

Well..cancerS had to stay quiet.

The concern was that Braden's initial cancer, neuroblastoma, would come back once we knocked out Braden's own immune system. He had relapsed with that cancer when he was five and there is no known cure for relapsed neuroblastoma. We did some "crazy" treatments, a phase one study in which he was one of only three children in the world who got it, and various other treatments to teach his own immune system to recognize any neuroblastoma cells and keep them dormant or kill them.

So once we knocked out his own immune system, Zach's cells would not have that same immunity and any dormant neuroblastoma cells would come back. And he would die.

But if we didn't do the transplant, he would die from the secondary leukemia.

Choosing a treatment path was very much like choosing how we wanted Braden to die.

So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.

Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.

Never.

That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.

I did what mother's do, I tried to figure out things that I could do to make this transplant as comfortable for Braden as possible.

So I shipped all of Braden's favorite toys and comfort items to The Children's Hospital of Philadelphia and packed clothes for two and a half months and two seasons. With his autism, it was important that we had as many familiar things for Braden as possible. I packed up his BatMan headquarters, his "guys" which are a mismatch of small plastic figures of Star Wars Characters, Avengers Figures, and Power Rangers guys, his favorite blankets to snuggle in, anything that would make the hospital feel more like home but could be washed every day or wiped down to sani-wipes to keep them germ and dust free while he had no immunity.

I am a planner, a strategic packer and I bring everything including the kitchen sink (well....not really but I always have plenty of wipes, so sort of).  I had two suitcases filled to 49.999 pounds of imporatn stuff, and a shopping list of items to get once we arrived in Philly.

And we had Braden's three stuffed tigers. Braden goes everyplace with his three stuffed tigers, they are family. They sleep with him, they ride with him in the car, they always go to the hospital, they ride in the plane, they go everywhere with him because they are his heart.

We got up the morning of March 18, 2014 and traveled to the airport. We boarded, took off and flew to Atlanta, which is clearly in a direct path between Kansas City and Philadelphia. ?? 

Both boys were excited about flying, Braden because he loves when the airplane bounces in the air so he can hold his hands up in the air and yell, "WHEE, THIS IS FUN!" as if he's on a roller coaster. Zach was excited because he was going to get a soda, which is normally not something I allow him to have at home. He feels like a total rebel when he gets one.

Then the next leg from Atlanta to Philadelphia...

We landed in Philly and heard Braden's familiar, "YAY AIRPWANE, Good job airpwane!" each while he clapped loudly and everyone near us giggled. It happens every time we land. (it is pretty cute)

What I remember isn't so much that he said it again, but that I felt warm tears running down my cheeks when he said it.  I don't cry...it just don't, but there were those dang tears running down my cheeks at that moment. Why in the world were they there? We had 6 days of testing before he was even going to be admitted into the hospital...it wasn't time to cry yet, we were just landing. Crying now made no sense.

I hadn't scheduled tears on my agenda for today and I had to get two boys off the plane...why were these stupid tears coming now? I was angry because I don't cry, especially in public but I couldn't stop them from flowing even though I was trying frantically to end this public show of emotion.

I sat in the seat,  packing his tigers in his backpack and making sure we didn't leave anything behind on the plane while the tears continued to roll down my face telling myself to stop it right now,

when it hit me.

I wasn't sure I would ever hear him say that adorable phrase ever again.

I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.

We walked out of our house that morning for what could be the last time he would ever be home, We said goodbye to our cat, Indy, and our fish, Darlin'...

We left everyone we loved in KC, all of our friends, and neighbors, Braden's best friends, who are his heart and soul, for what might be the last time we would ever see them...

everything we did that day was a potential last because it was quite possible that he was not coming back to Kansas City with us.

Over the past seven years of continual treatment, there have been more times than I can count that I have been terrified that we were at the end.

March 18, 2014 was another of those times.

It was so much more than a flight to Philly, with a stop in Atlanta.

It was the beginning of what we hoped would be a...

well, what we hoped would be a beginning.

And thankfully, it was.

Yesterday, Braden and Zach and I went on a four mile hike for two hours and I was the only one who was tired and ready to leave. Braden begged to stay and "go again?"

I have no idea what we will do today in celebration of Braden being here one year later. The odds were very much against him still being here today.

The beauty of today is that we can do whatever we want to do today...

we can do whatever the four of us want to do today, the possibilities are endless because we have been blessed and fortunate enough to have had another year with Braden.

Don't take the ability to make choices about what to do with your family each day for granted.

Every day is a gift and begin able to simply choose to do something as mundane as going to the store with my kids is...

remarkable.

TAKE THAT cANCER!

Typical East Coast Philly Pholks....

We all know the stereotype of "East Coasters"... brash, blunt, loud...

...you know...the East Coast "attitude" as portrayed on The Desperate Housewives of New Jersey and Jersey Shore.

They are rough and tough and "taulk about drinking caufee" all the time.

I'm a midwesterner...born and raised. I'm not a city girl. I grew up in the country with wide open spaces, beautiful sunsets, horses, and at least half mile before reaching another neighbor.

We've been traveling back and forth between Kansas City and Philly for over 5 years for our son's cancer treatment. He's nine now and we are just wrapping up a 2 month long stay in the city.

I'm used to everyone making eye contact, smiling, and saying hello to everyone we walk past...at the grocery store, mall, walking in the neighborhood, everywhere.

It's not like that in the city...

(city folks are laughing out loud right now in acknowledgment)

I'm a simple country mouse...living the life of a city mouse...

...with a 9 year old who is bald and wears a big pink mask to protect him from germs after a bone marrow transplant that has left him very immunosuppressed. It's quite a sight and attracts the stares of even seasoned city folks.

But while we've been here, we have learned a lot about you East Coasters, specifically the Philly Pholks with their bad ass, rough and tumble reputation.

Yes, East Coasters are direct...and blunt, (my people!! truly the yin to my yang!)

....but they are also kind...caring...giving...and...

(they'll really dislike this word)...

SWEET.

Let me tell you about a few things these Easter Coasters have done while we have been here.

There was one family who drove for about 2.5 hours to the hospital to surprise us with two huge baskets of goodies for us as a random act of kindness in celebration of a friend we have in common who would have been 41 that day. I was speechless.

Everyone at the hospital was delightful and the nurses (and some of the doctors) played basketball with Braden using the hoop we hung on his door. The child life specialist played with Braden each and every day and she even made him an official CHOP "Dr. Braden" badge. When he was dismissed, they gave him a stethoscope.

Left to right, our Neuroblastoma APN, Jennifer, Braden, our MDS APN Anne, and Dr. Olson our transplant doctor.

Rebecca...the child life specialist who played with Braden every day...we LOVE her!

Dr. Braden cleaning the baby's tubies.

When we were dismissed from the hospital and had to get a hotel to stay in for nearly a month several local foundations got together and paid for all of it. Each foundation paid for a week of our lodging and that was well over $4,000. I didn't ask any of them, one foundation called the hospital and offered and then asked a fellow foundation to join in. Unimaginable!

Ali and Joe McDonough from the Andrew McDonough B+ Foundation

Local people have reached out to bring things to us that we can't have delivered, like Braden's special yogurt and crackers. A sweet young lady even offered to drive 40 minutes one way to bring us fans when the air conditioning in the hotel went out. And one of my friend's best friends worked at the hospital and she stopped in to bring hugs, best present ever!

And a visit from my nephew and niece so I could give them hugs and meet my new baby great nephew, Carson! They've been living in Delaware for about a year and I have missed them terribly!! Isn't Carson BEAUTIFUL?? I know I'm biased...but those cheeks!!

The staff at the hotel we are staying in has been lovely to us. One of the housekeeping ladies we adore saw that I liked hot tea so she brought a beautiful tin of Chinese hot tea for me. Braden always blows her kisses and says hello to all of the folks working each time we go through the door. And they always ask him how he is doing.

It has been shocking how many people we pass in the streets stare (that's the norm) and then smile and say "Hi" to the bald little boy (which is NOT the norm)

Just yesterday, one of the men working at a sidewalk cafe outside Comcast Center was talking to Braden from across a fountain and asked him if he would like a fresh cinnamon roll.  And the police officers patrolling the streets always stop in their steps to say hello to Braden. (I thought they were supposed to be a especially tough bunch). Hmmmm....

The guys running the backhoe outside of the hotel digging some sort of trench for new pipes stop and say hello so they can talk "backhoe stuff" with Braden every time we go past them each day. Kind construction guys? That doesn't seem very East Coast.

A Kansas City friend called a friend who works with the 76'ers and they invited Braden out to the practice facility to play basketball. That's his love...his favorite thing to do in the entire world. And he got to shoot hoops with Greg Foster and some other coaches, he got to sit in the head coach's desk chair. Braden even played a game of "base-ketball". They made it up using one of the pads they use to block in practice and a basketball. It was awesome!

base-etball

We are now officially the biggest Sixers fans in history, FOREVER! 

Then one of the sweetest ladies I have ever met, Mary, even drove us back to the hotel so we didn't have to get another germy cab. WOW!

There is no way to express how excited Braden was about that hour spent with the Sixers!! Truly a dream beyond our wildest imagination!

On our walk yesterday, we saw a HUGE ladder firetruck outside the Courthouse near Logan Square and Braden was flipping out. We stopped to take a picture and the fireman who was in the back part of the truck near the ladder asked if he wanted to get inside the firetruck.

I quickly threw his mask on and they lifted him up to the main cab...and he got to honk the big horn. Yet another group that was not ranking so high on the "tough guy" scale.

As we walked away, we passed a group of homeless people who are often outside the court house. We pass them every day.  Seeing homeless people in Philly is, sadly, not unusual. The city is filled with people on the streets trying to survive. We generally just try to walk past but Braden is a social dude and always wants to say hello.

We walked past three men sitting near each other under a tree and the man in the middle yelled, "HEY!! SHORTY!!! HELLO!"  We slowed, waved, smiled, said hello, and kept walking...

and he then yelled,

"GOD BLESS YOU LITTLE MAN!"

Seriously?

A homeless man yelling "God bless you little man" to a bald 9 year old.

I cried...right there on the sidewalk in front of all of them and only narrowly managed to eek out the words, "God bless you!"

You Philly Pholks aren't nearly as tough and hardened as you want your reputation to be,

and I'm here to rat you out.

You are (take a deep breath and brace yourselves)...

nice.

In about 48 hours we are leaving Philly and heading back home after 2 months of city life.  Leaving with a little boy who feels well and has baby sprouts of hair and, to date, no sign of cancer.

Home to our friends who have been madly supportive, kind, loving and amazing for the 6.5 years we have been battling. Friends who were kind enough to send flowers to brighten our day, a box of Easter goodies for Braden (and me) and a Mother's Day package filled with cards and a big surprise, countless texts, posts, and messages. They have even sent wine and vodka. BOOM BABY! Man I am one blessed lady to have such amazing friends! :)

Heading home to daddy, big brother Zach (who donated his bone marrow to try to save his little brother),

our beta fish and kitty.

Home to our own beds, courtesy of a wonderful Kansas City businessman who is flying us home on his corporate jet because Braden cannot fly on a commercial airline right now due to the immunosuppression. Unreal!

Home...the most beautiful four letter word in the universe.

But we are leaving a place that feels a lot like home.

Thank you Philly! We will be back. In the meantime, we will miss you.

And we thank you for being so....

nice.

(get used to it...I'm going to keep using that four letter word to describe all of you "bad ass" Philly people) :)

You are beautiful!

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

How do you sleep at night...

I don't sleep much and when I do, it's not well.  No parent who has a child with cancer does.

The night before scans or a bone marrow biopsy/aspiration is one of those nights that is extremely difficult to get any rest.

Braden's autism gives us the blessing of him not knowing what he faces the next day. Honestly, that really is a blessing because he doesn't lose any sleep.  

Each time we take him for treatments or procedures that are going to be painful, I feel horrible. 

With that innocence and trust he places in us to keep him safe and happy, it weighs heavily on our hearts that we have to take him to the hospital to allow painful things to be done to him to try to help him survive.

Another thing that every parent of a child faces.

It's tough on the heart...

Braden just had a bone marrow biopsy and aspiration and those are never fun. Most children with cancer have to endure these, some fairly frequently. As of today, Braden has them every three months.

Let me show you what these brave babies go through.

First, this is the child we enter with...full of giggles and laughter and energy...

Braden does not go under full anesthesia. Instead, we do his bone marrow biopsy and aspiration in an exam room in the clinic under "conscious sedation".  Yes, he could be put into a full, deep sleep but when they do that, they have to run a breathing tube and that isn't always good in Braden's world as far as recovery.

He doesn't feel any pain during this conscious sedation, but he is aware that something is happening and he can feel the pressure.

He does not enjoy the experience and once we put on his pulse oxygen monitor, he realizes he is going to have to "lay on his tummy today" he tries very hard to convince us that we don't need to do it.

We also give him some versed which makes it so he doesn't remember what happens during the procedure...

I would like some too. 

I always stay in the room and help hold him down. Yes, he tries to get up and he frequently tell us he wants to go home now....

and that he does NOT want a bandaid.

He is EXTREMELY emphatic about that!

I stay by his head (with his tigers) and put my body weight across his shoulders and kiss him and tell him how brave he is while Dr. Neville goes about the business of the biopsy and aspiration.

The puncture is done with this treat...

See that long, thick needle? It has a core...the top is what you think it is...it's a screw that is twisted and turned into his his/back to create a hole in the bone.

Read that part again...HOLE IN THE BONE....

sounds pleasant doesn't it?

Now, imagine holding your child down while he is telling you he wants to go home...PWEASE MOM while they insert this and screw it through his skin into his bone.

Next, she uses this knife to core out a piece of bone marrow...

I will admit that I never watch the actual process...it's hard to see from my location and I'm focused on keeping him from sitting straight up and keeping him calm.

These are other tools of the trade...

If you are squeamish about needles and medical things, you are probably cringing right now. 

I'm not squeamish, but I cringe at the thought of this being shoved into my baby.

And doing it is not a choice, if we want him to have a chance to live.

And that....is messed up...

way the hell messed up!

He always does a great job and today he loudly said, "NO BANDAID" after Dr. Neville did the aspirate.  So as Dr. Neville put the bandaid on and he once again reminded her "no bandaid", without skipping a beat she told him that "Angela did it", she's our nurse. We all busted out laughing as poor Angela said, "Heyyyyy"! :)

Funny how with all of that tray of torture tools, he is most worried about bandaids...

(but he really does dislike bandaids)

After the procedure, Dr. Neville gave him lots of hugs and snuggles and he started to wake up.

We have to force him to lay down and chill because he tries to get right up and run around.  

He's 100% courage and 0% balance on all of those sedatives.  

This is the face we leave the hospital with...

Once home, we snuggle...

And take silly selfies per his request...

Kids with cANCER are brave....brave beyond the capacity of explanation of the word brave...

Parents of kids with cANCER follow their kids example of bravery...

and that is why I stay in the room while they do this procedure.

That is why I help hold him down...and talk to him...and kiss him...while they jab those horrible long needles and knives into his back and bones...

because I want to be the one there for him when he cries out to go home...

and not have a bandaid.

It's also why I don't sleep at night.

Someday in the future, people will look back at this horrific procedure and its tools and wonder why we ever had to do it that way...

sort of like how we look at leaching now.

I pray for that day...I work for that day...and I HOPE...

Fevers...

Fever...strikes fear in the heart of every oncology patient in the world.

Why would a word like "fever" be such a bad word...

why would a FEVER frighten you?

Simple.

If a temp gets to a certain parameter (in our case 101.5) and you have a central line for therapies (like a Hickman or Port) you have to go to the hospital.

Even though its just a fever!

It's not like when the rest of us get a fever...you don't just rest and take some Tylenol...in fact, you do quite the opposite.

This particular fever started with Zach on Saturday. Immediately, we separated the boys in the hope of not transmitting Zach's germs to Braden.

No such luck.

A series of events kicks into play once Braden gets a fever. Braden's started this morning when I woke him up for school and I could instantly tell he had a low grade temp of around 100.

Momcologists become thermometers because that temp means in or out of the hospital...it means the difference between being discharged from the hospital after a stay or continuing to live at the hospital.

I can literally feel Braden's temple with my cheek and tell within a couple decimal points exactly what his temp is. We've lived this 24/7 for almost 6 years and I lived for years in the hospital laying right beside Braden feeling his head with my cheek every five minutes or so to check for the fever in hopes we could go home.

The best four letter in the world...HOME.

And as a result, I've become a thermometer. ;)

The first thing you do when you feel any warmth, is confirm it with a thermometer to see "the number". You hold your breath while that thing ticks away and then you take a deep breath while hoping it's less than 101.5.

This morning, it was 100.1.

WHEW!

Based on that number, I headed down the left side of the "Fever Action Plan Flow Chart" rather than the right side. The left side is a much shorter side because the right begins with call the hospital and tell them you are coming in.

There's actually one question to answer to decide which chart to even pick which chart to use..."is Brian in town or out of town".

If it's the "Brian Is In Town Chart", everything is going to be simpler. If it's the "Brian Is Out Of Town Chart", things are going to be much more complicated with me having to ask friends to help (which I am better at now, but still stink at it).

The very first thing I do is begin the "Fever Ward Off Procedures".

It's at the top of both flow charts...

in bold print.

Those procedures are not unlike waving a dead chicken in the wind while facing west...or whatever the voodoo/mojo deal is.. LOL!!

Step one, kiss him and say a prayer.

Step two, give him his First Tiger and Second Tiger so he can hold them and feel better.

Step three, get all the covers off of him and if he has on pants, take them off. No reason to have blankets and heavy pants to help heat him up (and it actually CAN make a difference).

Step four, stop snuggling tightly because your body heat doesn't help. You only have to do this until the fever goes down or it hits 101.5...at 101.5 it's already too late so just snuggle.

Step five, alert school and find a ride for Zach (so much easier if we are using the "Brian Is In Town Chart").

Step six, post on Facebook...

Seriously.

Get people sending positive thoughts and prayers.

It works!!

It really does!

Step seven, take a shower because it may be the last one you will be taking with warm water that actually comes out of the faucet at more than drip for several days in the event he is admitted to the hospital.

Step eight, begin packing procedures which I will describe in just a bit because it's pretty complicated. LOL!

Lastly, step nine...wait for the temp to do what it's going to do while praying and hoping it doesn't hit the magic number...important to keep the covers off and continue to pray.

Once it hits 101.5, we MUST go in to have cultures taken for each lumen of the central line because a bacteria could be growing in the line and that can be deadly.  They can quickly go septic and die which is pretty scary.

If we are lucky, it's between the hours of 8:00 and 4:00, we can go to clinic and avoid the ER.

It we are not lucky, we have to face the dreaded ER.

Another reason to fear a fever.

The ER folks get us into a private room to wait our turn fairly quickly after check in so we are not exposed to everything else that is in the waiting room since our kids have a weakened immune system BUT it's not quick enough. I once had a lady behind me in line who kept hitting me in the back of the legs with the ER's wheelchair her son was in while he was throwing up violently into a bucket. I got that she was in a hurry but hitting me and exposing us all to the splattering wasn't helping it move faster.

And this was when Braden had no white blood cells.  Every ER visit is a prime opportunity to pick up other fun illnesses. Like the lady in front of me one day who asked her son to say hi to Braden...he did and then very sweetly reached up and touched his leg to be reassuring and nice. It was very kind...

Then she told me her son had meningitis and they were back "again" because it kept flaring back up.

Awesome.

ER visits can make a bad situation, deadly.

I'm still trying to get two Haz-Mat suits to wear into the ER.

Not kidding.

When you get to the hospital, they access the central line. Okay...again this is where you pray for clinic and not ER. The ER staff is NOT used to accessing and probably received training on it "one time" but they don't do it routinely.

The shaking hands and instructions on the tray are the first clue they have...

no clue.

Bonus Tip #1...never allow a resident or nurse in training to access your child's port.

NEVER.

I won't even go into that story. Just don't do it.

SO...I refuse to allow the ER staff to access and ask them to find someone in the ER who has worked in oncology (there are some there) OR I ask them to call someone on the oncology floor to do it. Braden's a tricky access and I'm not going to let someone poke him 8 times to get it.  This always ends up badly with hurt feelings on the part of the ER staff and I apologize and tell them it's not personal and that I'm just not nice.

Still, it still never ends well but I'm willing to have some "awkward time" in trade for less pain for Braden.  

They draw the culture, and then we wait for a white blood cell count.  If it's below a certain number and there are not enough white blood cells to fight infection, he begins a regimine of antibiotics while they bake the germs to see exactly which ones they are...then based on that, his drugs may change so it can address the specific type of bacteria in the line.

If his white blood cells are okay, we get a dose of IV antibiotics and then go home while they bake the cultures to see if a bacteria appears.

IF it does appear, they call you at any time night or day and you have to go inpatient for at least 48 hours.

If they don't call you are in the clear, but those 48 hours of baking bacteria makes you nervous and cringe every time the phone rings.

If the white blood cells are low we get admitted.

IF we are really lucky once admitted, we go home in 48 hours meaning the fever breaks and the antibiotics seem to be doing their job and we can do the remainder of the doses from home!

If we are NOT lucky and the fever continues, we stay put until it does stop. We've been inpatient for the full 14 days of doses many times.

Fevers can mean death.  A major reason to be terrified. Braden has many severe antibiotic allergies so it's always a tough spot to try to find an antibiotic that will work for him, which is scary.

Oh and you cannot give any Tylenol until the cultures are drawn so they feel MISERABLE and you can't help.

And you can never give Motrin because it can cause them to bleed out with a central line. I actually had an ER doctor offer it to Braden once...I reminded her that was a bad idea. ;)

She said, "oh that's right...I forgot!"

Whoops!!

(that's certainly terrifying)

Then there's the packing. Not a terrifying reason but a big one to not enjoy fevers. Forget something when you are on the "Brian Is Out Of Town Flow Chart" and you are out of luck because you aren't going to get it for several days.

I used to always keep a suitcase packed and in the back of my car. I haven't had that in my car for a long time BUT I do have one packed and ready to go at all times in the closet because there's no time to throw things into a suitcase when you have to rush to the hospital for those cultures to be drawn.

When Zach was smaller, I used to even have a bag packed for him so the "lucky person" I was able to beg to keep him would be able to grab it for him.

Thankfully, he's old enough that he can now pack his own.

Well...he might forget his clothes and a toothbrush...but he would NEVER forget his i-Pod or Nerf Guns...

gotta get the important stuff first!! ;)

Then there's my backpack.

I always have a backpack filled with toys, books, snacks, IV line dressing covers, a ziploc baggie, and a change of clothes for both of us.  I take it with us every place we go no matter what day.

(The change of clothes isn't for overnight...it's in the event of throwing up.  So is the baggie.  We learn from experience!)

That bag is ready all the time.

There are still two more bags which must come with us. First, Braden's backpack of tigers and blankets...he would cry the entire time without them.  And his bag of electronics to entertain him (dvd player and iPad)...

or I would cry the entire time without them. ;)

It's good to have something to occupy the endless hours. Never depend on hospital electronics.

EVER! :)

Another reason to dislike fevers...they ALWAYS happen on  a holiday or special event.

Tomorrow is school picture day.

He's been sick for pictures Every.Single.Year....

except for last year. We got lucky last year. The problem is that IF he misses pictures day tomorrow, we have to do retake day which isn't that big of a deal except we learned a long time ago to never expect tomorrow.

I don't know why I need those silly school pictures, but I do. It just makes me mad that cANCER and his cANCER hardware could stop them from happening.

I just want to see his sweet picture in the yearbook, Braden Hofen 3rd Grader.

Could be the last one.

His temp is down to 98.5 right now with no Tylenol having been given...

(told you posting for thoughts and prayers works) so I'm hopeful we can make pictures.

Braden's Army rocks!

TAKE THAT cANCER!

And the biggest reason we fear fevers is because it could mean the cancer is raging again. Fever is your body's way to build up warriors to kill foreign invaders inside the body. His is bumping up because he has a cold...the cold is obvious....

but...

it's the first place your head and heart go with a fever.

What if it's not just the cold?

What if his body is fighting more cancer cells too.

So for now, we wait, monitor the temp, hope it doesn't spike so we can stay on the left side of the "Fever Action Plan Flow Chart" and that he can do pictures tomorrow. No fever since 8:00 am so far.

Because his temp is down, we are sitting on the couch, snuggling with his favorite blankie watching Tom and Jerry while I type.

That's the good thing about fevers,  I get to be with my baby all day long.

The BEST thing about fevers...he's still alive to HAVE a fever.

So even though it terrifies me, annoys me, we are blessed to have this stupid fever.

It's a strange thing to be grateful for...and it's crazy to have to be grateful for the smiler pile of crap but I am.

Please keep sending hope the fever stays quiet and we get to stop at the initial box on the flow chart...

Maybe someday....years from now he will have a "normal fever" without cANCER in his life, without a central line...just a missed day of school.

Now THAT would be a VERY happy day!!!

Living...

Our foundation, Braden's Hope For Childhood Cancer, (www.BradensHope.org) just had our second annual HOPE Gala on the 28th of September.

It was an awesome event that many kind, supportive people attended to help us raise awareness and funds for targeted treatments of childhood cancer.

And it was a big job to pull it together for 550 people...raising about $90,000! What a great feeling!

Since Saturday, I've been rather melancholy.  I couldn't really wrap my head around why until today...when I figured it out.

I've been the President of Braden's Hope almost every minute of every day for several weeks getting the exciting gala preparations done with my friend, Jenny.  Thank goodness for Jenny....she worked twice as hard as I did!! She is AMAZING!!

I've been detouring with the boys....but I've honestly been in work mode around the clock for the most part.

Not something I'm proud of...but it was necessary.

I gave my speech on Saturday night...an update on the foundation and information about childhood cancer and targeted treatments for our kiddoes.

And then after the live auction,

I snuck upstairs to our room where Braden and Zach were sleeping while their babysitter cared for them.

And I woke up my soundly sleeping baby and gave him three shots of chemotherapy.

That sucked.

Beyond belief.

My poor baby!

Shots suck...

but shots when your mom wakes up you late at night in a strange place to poke your leg three times with burning chemo...

pretty much the king of sucky circumstances.

During my speech, I talked about targeted therapies and how important they are for our kids with cancer. I compared targeted therapies to treating dandelions in your yard.

You wouldn't rent an excavator and dig your lawn up 8 foot deep to get rid of the dandelions...you would go to the lawn and garden store and get the spray that kills the dandelions but leaves the grass largely unharmed.

Targeted therapies work that way...

chemo is the excavator method. It kills cancer cells...and healthy cells too.

What I didn't have the strength to say was that while funding targeted therapies has been our mission since our inception,

we had no way of knowing that on July 8 we would have a personal example of why targeted therapies are so important when Braden was diagnosed with TREATMENT INDUCED Leukemia.

Treatment induced....

...yes...

CAUSED by the treatments he received to save his life.

That's messed up!!

I just couldn't talk about it and take a chance of losing it in front of everyone during that speech.

So after the shots....

I went back downstairs to clean things up and thank everyone.

And get back into President mode...not mom mode.  Just "do" not "feel".

The last several days, I have been "feeling mode" and not in President mode very often.

I put up Halloween decorations and every time I pulled out something the boys had made when they were little, I choked back tears.

I know it's okay to cry...but I don't like to cry...

because once I start...

I'm not sure when I will stop.

We just finished the last of 7 days of chemo shots last night.

He's so tough...he never wants to do them and always says, "Let's not do our shots today mom!"

And then he does them.

He says"ouch" each poke and he squirms and tries to push my hands away so that damn needle doesn't come close.

And after each shot, he smiles and laughs and happily says "that one...or that two"...and finally "last one"...and then cheers and high fives and hugs!!

Every time...

He is SOO brave!!

I'm pretty sure I would look at the shot giver, curl up my fists and say, "go ahead...try it one more time and let's see what happens"...

And now his little legs are completely covered in big red welts from the chemo shots...and they are sore and a few blister.

I know he has to have the shots.

It's NOT a choice...

Yes, home health could come give the shots, but then I have to wait on them to show up whenever they want...take their phone calls about I need to come now instead of then...blah blah blah...and they would want to do them early in the day before they are off duty. I want him to have them right before he goes to sleep so he sleeps through the worst part after the injection.

And I have MS and have been mixing and injecting my own shots for almost 14 years.

So I do them so we can detour and do whatever we want whenever we want.

Now that things have slowed down with the President me, and I'm back to more of the Mom me...

I'm forced to feel again.

It's really a lot easier to NOT feel.

BUT...if I throw myself into the not feeling work thing...I miss out on the important stuff...

We need to make Halloween decorations, collect fall leaves, go for walks, play in the park...

because it may be our last fall together....

our last Halloween.

Right now, everything is a potential last.

And that SUCKS.

Period.

Today I took Braden to the park to play...

and we had a ton of fun and laughed and giggled and played like nothing was wrong.

Our best crapfest defense is a joyful detour offense.

It's how we fight...it's how we ALL feel better!

And tonight, I look at his little legs...

and once again reality smashes my heart into a billion pieces.

I am a hopeful realist.

And I believe in miracles....

but we LIVE every moment fully because we may not get that miracle on Earth.

It's a good way to live regardless of circumstances.

I wish I had figured that out before this cancer mess...

Learn from our situation...don't wait to live.

Carpe diem!!

And hope for tomorrow!

Gratitude

How many times do we complain or worry or become upset about "stuff" each and every day?

The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.

We all do it...all of us at some point...

Even me!  More often than I care to admit.

I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.

Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.

For whatever reason, they enjoy the drama.

And that, honestly, make me sick...

and frustrated...

and very, very mad.

Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who  "chime" in and defend their inalienable right to have wind chimes that make them happy.

And you can imagine the responses to that and the firestorm that was created on this site...

Again...

Wind chimes!

Yup, this is a real story...not just a hypothetical example....it's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.

Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.

She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.

And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.

You can't fix crazy and selfish...you just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.

And then hope and pray for them that some day, they will have "enough". For my blog about that...visit http://deliecehofen.blogspot.com/2013_03_14_archive.html

Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.

This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.

And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).

Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".

To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.

Not likely that is all going to align.

So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.

We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.

Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds).  Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.

Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.

Victory number one!

His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!

Victory number two!

Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.

That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.

The next day, we would have scans for the neuroblastoma to see if it remained quiet.

I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good news...it's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.

And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.

And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.

Victory #3.

Now we had about 3 hours to "play" before 5:00 when everything closed.

So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.

It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.

I decided that today...we were going in.

We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....

We opened the door and could immediately see into the massive worship space.

And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.

And I simply thanked God.

I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".

And we left.

I didn't even ask Him for clear scans the next day.  In all honesty, I didn't even think about it.

All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.

I just thanked Him.

I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.

And Braden's scans continued to show "no evidence of disease".

Victory #4

A tremendous blessing and gift.

TREMENDOUS....

We still get to move forward...we get a green light for this next round of shots...

and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.

We don't know what the next storm will be...

rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure),  transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....

Everything must align perfectly.

It's going to take a lot of hope, it's going to take a miracle...

But for now...we are just grateful for our blessings.

Each day, we get to choose how we approach life.

We choose detours...

Hope...

Love...

and Gratitude!!!

Wind chimes just don't matter!

Let them go....

And fight to live with a thankful heart for blessings that surround you.

Even in the darkest of storms...

we can find something to be grateful for....

And WE have a billion blessings to be grateful for even in the midst of our dark storm.

Most notably, a NINE year old who leads the charge and a TEN year old we love very much!

TAKE THAT cANCER!!

My friend Christine and me (my hair just started coming in after chemo) with our wind chimes a friend gave us!