John’s Video Montage

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here is a video montage of John’s summer…enjoy!

With love, Faith

16 Months Of Hell

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If you have seen this image, you know our history. 16 months of hell. Dotted with good times and good memories. yes….but mostly hell.

Because we did not have any viable traditional cancer options, we chose homeopathic treatments. Sounds nice, right? Yeah right. I am here to say that it is not an easy road by far to use homeopathic treatments to treat cancer. You are fighting for your child’s life in a blind world. Trying your best to find cures that have merit.

The only way to have any type of confirmation that what you are doing is working or not working is the dreaded MRI. And, the cancer’s mood and speed are factors in that too. So, really its all a guessing game.

After the horrible news that his cancer was spreading was given to us, we had to change course. We added new treatments on top of the old ones. It’s a veritable maze to figure out what is working and what is not. So, we just keep adding things and checking and double checking that nothing interacts with anything else. *sigh* It is such a long process of researching each individual thing. I could write a thesis paper on homeopathic treatment of cancer at this point.

Do you remember the old tales of your great-grandmother making your grandpa take cod liver oil everyday? Try getting a 5-year-old to take that. Or baking soda with maple syrup. Or veggie juice everyday. HE IS 5. IT IS A NIGHTMARE. But, with a tremendous amount of patience and attention we get it all down him everyday. And viola! The cancer stopped spreading.

An act of God? I think so! Homeopathy? I think so!

So, our lives are very complicated and a lot of time is spent figuring out how to stop the enemy and save our son’s life. I feel like if I don’t talk about this part of our lives in the fight, im leaving out most of our life. Does that make sense? We spend three or four hours a day coaxing John John to eat and drink the right things. Keeping him healthy is the only way to win this war. We just won a battle. His last MRI was exactly the same as the one before it. The cancer is in hiatus according to the doctor. We, in our own estimation, must have done something right.

Traditional treatment is quantitative. There are blood tests, bone marrow biopsies, and of course the scans. The only quantitative measure of homeopathic treatment is the MRI.

btw, beet juice is disgusting. just sayin.

Keep the love and prayers coming,

Faith

Tomorrow Is The Next Brain MRI

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So, there is this anxiety that slowly builds leading up to an MRI. I usually get the results the same day. God forbid the news is bad, we would be admitted directly to the oncology unit from MRI.

The thoughts that roll through my mind are like a snowball going downhill. So, we have been told we are waiting for a tumor to form out of the diffuse scattering of cancer spreading through John John’s brain. As I explained in previous posts, first the cancer cells spread, next they concentrate (on his last MRI they lit up brighter showing they were beginning to concentrate), then they get organized and form a tumor. It could be the size of a pea or a golf ball. We have to wait and see how it forms. Cancer has no rules, it does what it wants.

So, my thoughts… It is hard to look at John sometimes. I think of the ticking time bomb we call cancer spreading through his precious head and I lose it. It is in those moments I turn to God for reassurance that now is not the time to think of this. I try to stay present. Waiting for a tumor to grow is a mind game. Inevitably I have dreams leading up to the date of the MRI. In my dreams I can see the MRI scans and I clearly see the tumor. My worst fantasies take me to dark thoughts of my first son dying 12 years ago.

Keeping present in the moment is a struggle leading up to the date of the scan. The preparations include remembering what time he can have solid food until, what time he has to stop drinking clear liquids at, making sure we have gas in the car for the long drive into Philadelphia, making sure I have toll money for the bridge and parking, making sure I have his ka-Cheetos (Cheetos) and juice for after the scan to ensure he eats quickly so we can get out of there as fast as possible, mentally preparing myself for potentially bad news, mentally preparing myself for a (possible) bad reaction to the anesthesia.

Oh the anesthesia……. 8 weeks ago after his last MRI he had what is called an emergent reaction. This involves him coming out of anesthesia thrashing and screaming for an hour straight. There is no reasoning with him. He is in a drugged haze and the pentabarbitol (medication) has not set well with him. An emergent reaction is dangerous (one of the many risks of deep sedation) because he can potentially hurt himself very badly. The thrashing motions are much like he is peddling a bicycle and participating in a boxing match all at the same time. It took 4 people after the last MRI to keep him safe. I got punched in the face. So, the risk of an emergent reaction tomorrow is very real.

The possibility of bad news is always on the forefront of my mind. 16 months of experience have not dissipated the fear of bad news. I got a phone call 2 MRIs ago that his cancer was spreading. I know the risks of not preparing and being caught off guard have the potential to knock me to my knees. I always pack an overnight bag in case we are admitted. Mentally it reminds me that reality can change in the blink of an eye.

How is John doing? He seems to be having increased symptoms of frontal lobe brain damage lately. No one knows why. It could be him hitting a new developmental milestone and the brain damage symptoms just changing. It could be the cancer spreading into the frontal lobe. I don’t know. He seems ok aside from a few episodes of nausea. But, he has never followed the textbook of brain cancer. Even when he had a 10 inch by 8 inch tumor in his head. He showed the neurological symptoms of his right side becoming weak, but never the early morning headaches accompanied with nausea and vomiting. It was more like random headaches and random vomiting a total of 4 times. So, his symptoms tell us very little.

Tomorrow we will get up at 6:30 to leave the house by 7am. We have to arrive at MRI at 8:30am for a 10am MRI. The MRI itself takes one hour. The anesthesia recovery takes 2 hours. Hopefully we will be out of there by about 1:30. Afterward I have recovery to look forward to at home. The MRI dance

Photo credits to Josh Street

With Love, Faith

Fireman Kevin, One Year Later

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Photo credits to Josh Street

A year ago today we met fireman Kevin. It was a chance meeting. We were at the Evesham fall festival. My son was in his stroller just a month out of the hospital from his brain tumor removal, and he said to me, “mom, I want to be a firemen!” I instantly sprung into action. My son had never said he had a dream before. It was a moving moment for me. I could see his desire playing out in my mind. I could see him grown up, fulfilling the role of a fireman.

I found the chief of the fire company and asked if a fireman could come out in full turn out gear and talk to my son. They told me to come back in a half hour to watch the jaws of life presentation and they would make sure a fireman talked to John John.

A half hour later we came back and I didn’t see a fireman gunning for us. so, I tapped fireman Kevin on the shoulder. I asked him to talk to john john. That is when I took this picture.

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It was the spark of a dream. A real live skin on superhero. As I took this shot, tears were in my eyes. Behind my big sunglasses I was crying in a moment only a parent that could lose their child could understand. It was a dream that might never come true. it was a moment of joy for a child that seemed to have no future, he had created his own dream. Despite the limitations in my mind, he was LIVING.

Let me see if I can explain this. In my mind my child was dying. Slowly. I saw no promise of a future. For him to say he had a dream, I had to react immediately. There was no waiting with cancer. The luxury of time is gone with that diagnosis. I wanted my child to have his moment right then. And he did. Little did I know what door would be opened in that moment.

A woman came over to me. She had been watching my face. She said to me ” I feel like my life has come full circle. Seeing my child with yours.” Fireman Kevin was her little boy. He was all grown and was giving a dream to another little boy.

An amazing relationship was forged that day. A superhero and two mothers found common ground to celebrate growth. It was a day I will never forget. I think fireman Kevin’s pebble is still rippling in our lives. The waves of water continue to lap at the shore and bring love and dreams to a little boy who needs it.

John is a fireman because of fireman Kevin. He is a real fireman. His dream is realized and nothing will stop him from seeing that as his identity.

with much love, Faith

How to Tell People Your Kid Has Cancer

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Invariably you will come to a point where you feel you must divulge in a conversation the fact that your child has cancer. Most of the time it is an awkward sort of admission associated with some sort of odd behavior my child is displaying. Or a justification of the choices we have made for our families schedule. It is always uncomfortable and almost always followed up by shock or disbelief from the other party.

I can not tell you how many times John John is excited and out of control. It is hard to explain to people that he has a hard time controlling his emotional impulses because of brain damage caused by his tumor removal. Yes he has brain cancer.

I can not tell you how many times John John is stared at because he wears a brace on his leg and he tells another child, ” it’s because of my brain cancer” (add in other parents look of horror) I just smile and laugh it off.

I can not tell you how many times people ask us how we are doing and we confess that we are struggling or wish for prayers for our sons brain cancer. Jaw dropping.

I can not tell you how many times I must update neighbors, friends, family, people at church, and strangers who recognize us of how John John is doing. I always feel like I’m the broadcaster for John John who has no voice.

We were homeschoolers, I can not tell you how many times I have had to explain why my daughter is in private school. Ill do you the favor of explaining it here, mostly because I feel guilty about the choice. Hope needs a life outside of cancer. She needs less interruption when she is learning. She began to have migraines. A structured school environment relieves the day-to-day stress of having a brother with cancer. It’s a lot to ask of a 6-year-old to accommodate her brothers behavior from brain damage and cancer.

inevitably comes the responses. (I will tread upon this subject delicately) People don’t know how to respond to the fact that our son has brain cancer. It is easy to come up with a token bible verse or cliché response. Really, all we need to hear is “we will pray for you” or “I’m sorry”. There really is no other good response. Other responses either sound hopeless or like The Lord is shorting us. I know all responses are well-intentioned, but they can seem like a slap in the face in the wrong moment.

So, I tend to introduce my children to people and leave it at that. If people inquire as to how we are doing, I am honest about John’s brain cancer. If he offends another child, I beg mercy with the parent explaining that we have challenges. (I don’t pull the cancer card very often). I keep people who know up to date through Facebook and the blog. I make phone calls when changes in his status occur. And, in general try very hard to live a normal life.

Love deeply while you have the chance, Faith

Another Pebble Dropped Into Our Pond Danielle and Josh Street

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The significance of a pebble dropped into a still pond is profound. It is an act of kindness that is selfless and can not be duplicated. Its ripple effects touch others lives and the blessing grows and you have no idea how far the ripples will reach, because you can’t see that far away. We have experienced so many of these pebbles in the last 15 months since John John was diagnosed with brain cancer, I can not even count.

Danielle and Josh Street dropped a pebble into the pond of our lives. The offer was simple, let us take pictures for you. I thought about it for a while. I love my children and professional photos of them would be priceless to us. We don’t know how much time on earth any of us has. I thought about John. I decided it was a great idea.

The choice of background was simple, John loves the firehouse and all the firemen. We decided to meet there for an evening of running around and fun. I’m thinking Danielle and Josh were probably tired after that photo shoot!

Back to the pebble. An act of love with no expectation of return was their pebble. They were simply doing what comes natural to them, taking pictures. It was a gesture of love and kindness. Part of the ripple effect is that we have beautiful photos forever of our children. Another ripple, our families will receive photos of their grandchildren. Another ripple, the firemen will have the memory of the evening and more time spent with John at the firehouse. Another ripple, John had a ton of fun. The ripples go on and on…..They have already reached 3000 miles away, and soon will go across the world to our friends there.

I wanted to thank the Street Family for the beautiful photos and put a link to their website here for all of you to look at. The photos on this post are theirs. These are a few of my favorites. They are local to NJ and attend Fac.

www.joshstreetdesign.com

Josh Street’s Facebook Page

With love, Faith

Sometimes we’re just normal people

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We don’t always live and operate in cancer world. I was reading through my old blog post and realized recently that 98% of what I post about is cancer related. It does have a tendency to creep into my thoughts daily. Why wouldn’t it? Anywho, Every now and then this thing happens. I forget for a day or so that my son has brain cancer. Life morphs into a normal ebb and flow. It is surreal looking backwards at these days. Then suddenly something will remind us that he is a fragile human with cancer.

The other day, we were doing our usual morning routine and getting quite frustrated with John John as he was not being very cooperative about taking his supplements. Tension was in the air. I had happened to be in one of these zones of normalcy. I was snapped back into reality when he said he had a headache and was nauseous. Oh dear, brain cancer symptoms cropping up again. *Sigh*

Really, were just normal people though. We deal with all the things normal people do. Laundry, dinner, children, bills, etc. We have ups and downs not related to cancer. Cancer just complicates the normal ups and downs. It has changed how we run our daily lives, but it doesn’t define us. I guess what I am trying to say is that cancer is something we live, yes. But, cancer is not our identity. It is something happening to us. It is not what our lives are comprised of.

My husband still plays an ungodly amount of softball every year. I still like to read a ton and we both like playing with the kids. We love to go places and have interesting experiences together. They are more important now than they were before, only because we have perspective. We know how things can change in an instant.

I will never forget the moment Dr. Liner told me John John had brain cancer. We had suspected he had a tumor. But, we had no idea how it would change our way of thinking.

That moment the other day when John said he had a headache. Suddenly we remembered to be soft towards each other. Not impatient and demanding. There was a shift in the mood and tension. Tenderness is something we had forgotten in the moment of frustration. Sometimes, were just normal people….

With Love, Faith

Being A Sibling Of A Child With Cancer

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I will preface this post with the fact that with all the burdens my daughter endures, she does so with as much grace as a 6-year-old can give. And, extra special attention and love are given to her to try to compensate all the changes in her world. She has exclusive privileges to counterbalance the lavish attention on her brother.

Being the sister of a child with cancer is not easy. Hope’s world was turned upside down 16 months ago. The day her brother was diagnosed with brain cancer. She was only 5 years old and she and her brother were dynamic opposites in personality. It started off for her like a game, she got to have a 10 day sleep over at her best friend’s house. That got old though and she missed her family. She knew her brother was very sick and in the hospital. But, her capacity to understand the gravity of the situation was nonexistent.

When she came home, a new grandma she didn’t remember was at her house. Mommy was nowhere to be found and neither was her brother. She was shuffled back and forth between the house and the hospital for a month. She couldn’t touch her brother for a few weeks, and he was in a wheelchair. This was confusing and scary. The fact that he couldn’t walk and was in pain a lot of the time was difficult to explain to her.

As the weeks progressed John was ready to come home. This was the hardest of all as it called for the biggest concessions on her part. Her brother came home in a wheelchair and with a walker. But, he could not walk unassisted and much of our attention was focused on keeping him safe. If John took a toy from her, there was no touching him or taking it back. It took a tremendous amount of self-control on her part. If he hit her she could not touch him. If he fell at that point he had a freshly placed plate in his head and he could be gravely injured. He had a lot of unresolved brain damage that caused erratic behavior and temper tantrums. Plus he was simply frustrated that he couldn’t make his body do what he wanted it to. He was down right mean. Hope really had to give him space and that was hard for her. If he went where she was and caused problems, she simply had to vacate. Walk away and not react to him. That is a lot to ask from a 5-year-old.

As time went on and John got stronger Hope still had to deal with the brain damage her brother suffered. Erratic behavior, preferential treatment (in her eyes), aggression, and a very high volume of voice. (I mean LOUD). She had to endure John and his aggression without reacting, trusting us to take care of each situation. (she wasn’t always good at this, but I have to give her credit. She did well).

Then there was the lavish attention. John became a junior celebrity in our community. People were always careful to include Hope, John was still in the lime light. Hope was a champ about this. I think she enjoyed the extra special activities and began to understand that John was special because of all he endured. She benefited from his cancer by receiving extra love and attention too.

Today, John and Hope are friends some days and enemies other days. They play together much better than they ever did before John’s diagnosis. There on an even keel as far as attention goes. John’s brain damage is in check and he is not so fragile.

Hope really endured a lot as a sibling. She took many hits for the home team. I am so proud of her. She is part of this tragedy too. She knows the truth of the situation now, and loves her brother. She understands the fragility of the situation and does her best to accommodate her brother as we ask her to. She really is a hero too.

Love, Faith

Reassuring Ourselves

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Most parents who have children with cancer have certain check points that tell them if they are ok, or not. Normally it is weekly and through blood tests. You get to understand the numbers and if they are up or down and what that means. It gives you a safety net in which your world operates. You know what must be done when a particular blood count is down….or if another cell count is high. It’s what rules your life…

It’s different for a parent of a child with brain cancer that can’t be treated. There are no numbers. There are no weekly assessments of your childs wellbeing. it is a literal abyss of the unknown. We wait for mri’s from between 6 weeks to 3 months depending on how bad things are. Every 6 weeks if things look bad….every 3 months if things look good. If it is bad its is for a long stretch of 6 week periods….a lot of 6 week periods….In which, we crumble into our our shells and try to be human. without the weirdness of, my kid might be dying moments.

And in the end that three-month comfortable stretch can end in disaster, like it did this last three-month stretch for us. The cancer is infiltrating. What the hell does that even mean???????!!!!!!!!!!

For us it means going from three months between mri’s to 6 weeks again. Were to be watching for tumors to form where the cancer has infiltrated.

Wasted time.

wasted time.

wasted time.

we waste all our time at this point worrying about what is happening in our sons head. we don’t get the luxury of a weekly report. we go months without knowing what this cancer is doing to our child. we have no hand leading us into decisions or treatment. we are lost in an abyss of self-treatment in a cancer that no one knows anything about.

As parents there is no reassurance for us. We rely on the mri’s to tell us what our son’s cancer is doing….

It’s hard to wait. Even harder when a life is on the line….even harder when a family of hearts are on the line.

With love,

Faith

Family Support

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When most people think of family, they think of their immediate blood relatives. I do too, to a certain extent. I also think of all of the people who comprise our “intentional” family. I think the concept of intentional family can best be described as the family you get to choose. The people God places in your life that become your immediate support network. Our whole family loves us. All the firefighters, Fireman Jim’s family, the U Penn basketball team, Fireman Kevin’s family, a multitude of friends, and of course our immediate blood relatives.

However, without the wide base of support from all of these groups of people we would never have survived the last 14 months. It seems as though at just the right moment God dropped a new person into our lives to fill in a gap, where a need had not been met. Relationships that are deep have grown out of the last years hardship. Bonds have been foraged with people that we never expected. We are treated like family by people we never knew 14 months ago. They have helped us to the extent that we have not had to limp along on this journey, but have thrived.

From the depths of my heart, I want to express how moved I have been by Peoples love for our son and our family. It has shifted my perspective quite a bit. I never felt welcomed by my extended family, nor do I have any relationship with most of them. I always saw it as a void in my life. It produced a longing and a desire to replace them. I sought out a new “family” with desperation. I made my own family with my husband to try to fill some of the void. But, I never could quite get a hold of what I was looking for. I felt a deep sense of rejection and worthlessness. It was not easy to live in my world.

What changed this despair into joy are all the people you see in the photos above. God dropping each one into our lives to fill the void of traditional extended family. My perspective is one that includes these people in my definition of what comprises a healthy family. There is plenty of love to go around, plenty of ears to listen, plenty of smiles, plenty of acts of selfless love exchanged, and a sense of belonging. We know where our home is, and it is not just in one place. But, rather in the company of people we know are invested in our lives. There not going anywhere. That is what my family looks like. God had a plan for us.

With Love, Faith

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