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

New MRI Results

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And the new MRI results are in. The cancer hasn’t changed size, but is lighting up brighter in one spot on the mri. More cells in one spot will make the MRI light up brighter. So, good news and bad news. Who knows anymore. I feel like were on a rollercoaster of results. Like most cancer patients living from one test result to the next. So, what is the game plan you ask? Another MRI in 8-10 weeks as long as John John doesn’t go down hill physically.

He has had a few headaches and one random vomiting episode. Nothing serious symptom wise for a brain cancer patient. We will continue to fight with our little superhero.

With love, Faith

Every Picture tells A Story

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John in all of his handsomeness is getting his hair cut for the first time in a salon. Lindsay has been cutting his hair since he was born, but we brought him to her for the first time. He insisted on a scissor cut. Not a bzzzzzzzzzzz cut. He was vocal about his desires and very interested in looking in the mirror to see what she was doing.

Insert metaphor. We all watch our lives in a mirror of sorts, trying to see what shaping is going on. But, often we miss a part or parts of the cutting and trimming that is happening. We know that a situation is pressing, and yet we don’t see the superfluous crap being cut away from our lives. We know that death is a possibility, and yet we don’t see that our priorities have changed. We sense these things and yet do not acknowledge them. We feel a shift, and we can’t quite pin it down. its subtle. it is real. but not within our control or will. it is natural. it is The Holy Spirit within us trying to get us prepared and in line with what is to come. Good or bad.

If we are smart, we flow with it. If we are in tuned we let the feelings flow too. We know change is inevitable and even impending. We feel the pressure, we don’t cave to it….we adjust our perspectives to match its powerful impact on our lives.

Yes, I speak of life and death all in the same breath. It belongs in the same breath. It is all one in the same with God. I differentiate by saying that Jesus is the savior and creator. I am not the church of Oprah. But, death and life are all happening before our eyes. whether we acknowledge it or not. we are all dying, and we are all living.

John is no different. dying and living. one breath. It is in this realization that we remember to live life to the full as Jesus spoke of. To grasp love and live it. To be active in loving and receiving love. Be present. Be ready to adjust. Be ready to trim a bit off the sides of life…..

Lacking the right words,

Faith

Karing for Katie….reality sets in…..

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There is a community on Facebook called karing for Katie. she has a type of glioma similar to John Johns. But, John Johns is considered more aggressive. within 6 weeks of this childs brain tumors beginning to grow back, she was dead. yes, dead.

We are awaiting John Johns scan on the 31st to see if the cancer cells have formed tumors. I have had a stern warning that now is the time to prepare myself from the oncologist. I had a moment of panic when I read Karing for Katie’s update. She had died only 6 weeks after the tumors had started to regrow. I can not image losing John John in the next six weeks. It sickens my stomach and makes me cry. and throw up. yes. reality has a way of setting in physically. I read that post and threw up. 6 weeks….

Can you imagine the last 6 weeks with your child? even in good health it is too short to do every last thing and capture every moment. But, in a decline it is devastating. Every day is not a good day and you grasp at moments. not memories. you grasp at small conversations. not wonderful days at amusement parks. days spent in bed mostly drugged and sleeping to avoid the pain and side effects of brain tumors. not a glorious going out of this world. vomiting and headaches. the hallmarks of brain tumors.

We have had one episode of throwing up this week, followed by three days of consistent headaches. I can see my future. I am bleak at this point. I don’t know what that mri will yield, but I doubt it will be good news. the symptoms are there. we are throwing every homeopathic remedy known to man at this cancer. I just don’t know that it is working.

Perhaps I am just a bit down. But, the reality is I AM SCARED. I am scared to lose another child. I cannot see my daughter without my son. It is a sad and bleak outlook. They are best friends and best enemies. A true sibling rivalry with a deep love. What shall I do with just one child? Ask Gabriella miller’s family. she died of brain tumors and left her brother an only sibling. what a dynamic shift. Good Lord.

I think about 6 weeks and it scares me, what if….what if….what if…..what shall I say. I am not generally a fatalist. but, this hit me in the face hard. I know John John will die from his brain tumors. it’s a matter of time. We have done as much as possible with this time as we could possibly do, and continue to do so.

I said in an interview with abc news, I said “a future for John John is a hard thing to contemplate ” I don’t know if there is one for him.

He has more titles than most people I know. He is a U Penn basketball player, A fireman with Evesham Fire Dept, A US Federal Marshall, he’s a workin man by most people’s standards. But, he is 4….and has brain cancer. who knows what tomorrow will bring.

I await the 31st of July for his next mri to tell us what we are to expect. It is scary and intimidating. I feel so out of control. I just pray we have more than 6 weeks.

enough for now,

Faith

People Are Moved By My Son’s Bravery

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This photo came with the caption by Fireman Kevin

Firefighter John John had a visitor this week at the fire house. A US Marshal dropped off a hat, shirt, a signed junior deputy certificate and more. This little boy, with a huge heart, has touched more people than I could ever imagine and I have the honor of knowing him.

I can not express how this whole situation touches my heart. John John is producing a legacy that will follow him his whole life. His struggle and fight against brain cancer along with his deep love for life is touching others deeply. It moves me. We don’t know who left this gift for John John or how they came to know about them, but we love them. They will bring an excitement to our son and a new curiosity about life to his world. That my friends it what it is all about. He has a zeal for life that we all envy and want to catch a piece of. He is brave and knows no limitations on life. He does everything with all his being and his whole heart.

He has a family so big, I can not even count the number of people. His support base is wide and deep. My words are insignificant to tell his story. I try my best to let you all catch a glimpse of our world and all the love and blessings we receive. John loves life. He lives it deeper than most of us do. He has been afforded many opportunities to do things no other 4-year-old can experience. I think our being proactive and fireman Kevin’s love has set off an unstoppable chain reaction of love. It all started with a single act of love. You can read the beginning of this ripple in the world by clicking here.

The ripple effect of one-act of unselfishness can affect so many lives, you can never count. Fireman Kevin threw a pebble into a pond. You can read about some of the ripple effects here, and here, and here. It is amazing what we as people can do to touch others lives. It is inspirational. We now know a new depth of love and community that I wish everyone could experience.

I myself have never had this kind of community. It is a humbling experience to say the least. To receive love with no expectations has been a lesson for me. To accept help without asking is amazing. To be chosen and not have to work to be accepted is a huge hurdle for me to jump. I know that I am loved deeply without expectation of return. That is real love. And I am blessed to experience it every time I turn around! Wow! Just Wow!

Your child doesn’t have to have cancer to have this life. it is intentional. We sought out the firemen. It was there love that caused the ripple effect. We can all choose intentional community. Love spreads. Love pays it forward. People are starving for community. Go drop a pebble in a pond somewhere. With no expectation of return, and watch what happens. It has enriched our lives far beyond what I could have ever imagined!

with love,

Faith

 

The Struggle

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I love this picture because it tells a story. A story of trusting that you will land on both feet. I have jumped off the proverbial dock and am in mid-air right now. I am trying to trust that no matter what shows up on that mri coming up, that I am supposed to land on both feet. John is on that dock jumping with us. Although he only knows the bliss of childhood and doesn’t realize that landing on both feet over and over again is how life is going to go for him, he keeps getting back up on that dock.

I do not enjoy seeing my shadow over water. I never really trust that I am going to land on both feet. I have fallen before and it hurts. somehow that pain overshadows the bliss. Not that waiting for an mri is blissful, but the proverbial bliss that life has to offer. It is a struggle. I enjoy moments where joy is to be had. It is hard to not allow the pain of the unknown to overshadow the joy. I think anyone in our situation would have the same struggle.

I keep reminding myself that my hope is not placed in an outcome. But, in God who has the bigger picture. As the days roll on and the mri date gets closer and closer, my anxiety rises. It’s a struggle. Keeping my focus right now is difficult. I know I can land on both feet. I am trying hard to believe that while looking out over the water and seeing my shadow down below.

John is an inspiration to me. He only knows the joy of the descent into the water. He jumps again and again. With laughter and expectation of the next jump. What a lesson we can all learn from him!

Fear runs deep, but it’s never what we want to feel. We want the good fluffy feeling stuff in our lives. I am beginning to see that it is a choice we make. We can choose to live in the bondage of fear. Or we can choose to live in the freedom of the moment. It is a moment by moment struggle in my life. I look at my children and am desiring more and more their outlook on life. Expectation of what the next moment will bring, with a smile.

With Love,

Faith

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