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

John John’s 5th Birthday Bash

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100+ People.

The party was a smashing success. As you can see the Evesham Fire Rescue were there in full force with a fire truck for John’s party along with Sparky the dog. What little boy gets to have a real fire truck at his birthday party??!!! Thank you for all the love! The University of Pennsylvania basketball team came. And a ton of friends and family, my father and stepmom even drove in from Texas for the party. Of course Fireman Kevin was there :)

I didn’t cry once. I thought I would be a mess of emotions, but it was a very happy day. John had such a good time, that he wore himself out! I will live on this day for a long time to come. I can not remember a more touching series of moments in one day. Fireman Kevin swam with the kids in the lake. Alyssa from CHOP jumped off the dock with John dozens of times and even went home with a minion tattoo. LOL!! The basketball team from U Penn came out in force with gifts and high fives all over the place. The Firemen let the kids climb all over the truck with their sandy feet and wet bathing suits. Sparky the firedog was John’s new best friend. He talked to him the whole time he opened his presents, even though all Sparky could do was give a thumbs up. ;) . The Rescue Explorers from the Fire Department came out and helped the kids explore the parts of the fire truck. Friends cheered John on as he opened his presents. The whole sheet cake was demolished! I can not even unjumble the memories enough to get them onto paper yet. All John’s little friends were there. The kids ran the show. It was a love fest! Friends who work at CHOP sent gifts. Firemen who couldn’t come sent gifts. Strangers sent gifts. It was a very humbling experience on the whole. The party ran a cool 3 1/2 hours. It was a whirlwind of activity and fun. We had the largest chorus of happy birthday that I have ever heard!

I am eternally grateful for memories like this. Provided by selfless people. They are what lights up my world! Someday these memories may be all I have to look back on! I revel in the smiles and laughter. It warms my heart how much people care for our family. It’s a God thing.

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Waiting For A Tumor To Grow Is A Mind Game

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On John’s last mri we were given some very devastating news. The cancer is infiltrating his brain in two spots. We were told we have to wait 6 weeks for another mri. During this time it is expected for these cancer cells to begin to form into tumors. Now the mind games begin.

Its hard not to go THERE. Death. My thoughts have been wandering there quite a bit lately. I find myself with tears rolling down my cheeks at any given time. I have to catch myself before I get to far into the thoughts of death and what cancer really does to people. It kills them. I have seen the enemy and there is only one way this is going to end well. We need a miracle. That in and of itself is a mind game. Yes, God does heal and perform miracles. But, sometimes God says no. Sometimes the healing occurs in heaven when we want it here on earth.

When I look at the mri images, it looks like a lit up blob. It doesn’t look like it could kill. It looks like the sun in the middle of John John’s brain. He doesn’t even have any headaches yet. This is good. We have been diligent about all the homeopathic remedies we are using. So, why is it spreading? I wish I knew.

If I could DO anything more, I would. I pray constantly. I talk to God all day long. I am a DOER, not a waiter. Waiting is excruciating to me. It’s hard to accept that I can not DO anything. It is hard to accept that all I can do is wait.

There is an art to waiting, I am learning. Its living in the moment. Enjoying every little bit of the day. Remembering that the world has not ended yet, we are all still here. Mind games. Not allowing my mind to wander is hard. I try to stop the morbid thoughts and just be patient. The information will come eventually one way or the other soon enough. I am scheduling the mri for the first week of august. John’s birthday bash is July 5th and his real birthday is July 29th. We need the comfort of having his birthday pass before we embark on this long road once again. Having those two things to focus on is very important to all of us. It relieves some of the tension of playing mind games with ourselves.

It seems so stupid to have to wait for a tumor to grow. No one ever told us this was how cancer works. But apparently the cells infiltrate the brain and the brain inflames. Then all the cancer cells get together and have a party and the tumor becomes a tumor. How weird, right? These cancer cells seem like evil little minions hell-bent on destruction. Little purple minions (for all of you who have seen despicable me 2) This is how I imagine them. There smart little minions, with one mission. To get together and create havoc. Mind games. I need a visual in my head. So, the evil minions are plotting right now. We just have to wait and see if we win or they do. Someone gave me a large purple minion. I think ill set fire to it in my fire pit. Then we will all sing the banana song and eat bananas. Ha!

Faith

The Mri Dance, what they don’t tell you when your child is diagnosed with cancer

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So, your child was diagnosed with brain cancer. What now. No one ever told me I would be living from mri to mri. And these mri’s are a huge ordeal. First you have to fast, that means no food or liquid the morning of. I figured out pretty quickly that I needed to make the appointments for these mri’s in the morning as early as possible. You can’t tell a 4-year-old that he can’t have breakfast without a huge melt down. Lesson learned.

Then there is the anesthesia. Ooooooooohhhhhhhhh the anesthesia. First comes the giggle juice. This makes them forget that there about to get an iv. It also renders them totally unstable even lying down. It’s like a 6 pack of beer in a syringe. Then the screaming and yelling and thrashing about for the iv. Then the actual sedation. They pump the iv full of different types of drugs with names 6 miles long until John is asleep.

Now the waiting begins. The mri could take one to three hours depending on what they are imaging. The waiting is hard on me. All the scenarios humanly possible run through my head about what could go wrong. I usually am drinking redbull trying to recover from the obnoxiously early alarm we all had to endure. I try to keep my mind clear and my head screwed on straight instead of thinking about disasters. Then comes the fun part.

When he comes out of the mri, he is asleep for a while. But, then the evil nurses wake him up. All hell usually breaks loose. He has to eat and drink something before the offensive iv can be pulled out. Which he is hyperfocused on and usually crying about. But, to make matters worse he is three sheets to the wind on medication. Drooling, drooping to one side, and eyes rolling in his head. I always bring a bag of Cheetos because I know he never turn down Cheetos. This gets him eating quickly. The game is, the faster he eats and drinks, the faster the iv comes out and he becomes somewhat manageable. Lemonade, my other weapon of choice. He never turns it down. So, during this dance of Cheetos being eaten with one eye open and the mess spreading catastrophically by the moment. Cheetos going in every direction and all over the bed, his hair, his clothes……oh for the love of God, eat the Cheetos kid, go for it! Then the drama of the iv removal. add tears to the cheeto dust. By this point I have to stand by the bed and make sure he doesn’t choke or fall asleep with cheeto in his mouth. Or hit his head by drooping over and trying to jerk it up into a sitting position.

Getting a wet noodle of a kid dressed to leave takes three people. Nuff said.

Into the car we go, Cheetos everywhere. The drive home usually involves a lot of crying over dropped lemonade and Cheetos. Theres nothing like fighting philly traffic trying to reach into the back seat and find whatever fell onto the floor while in traffic on 95. Yes, I am a very safe driver. The screaming child always wins.

Once we get home the fun really begins. He cant walk. But he thinks he can. Convincing him to not try is a war. we usually spread couch cushions around on the floor and try to contain him to that one spot. Oh did I mention he cant sit up either? This lasts up to 8 hours. What a nightmare.

Wash rinse and repeat. every 6 weeks to three months. This is the mri dance no one will ever tell you that you will endure. Oh, and you have to wait for the dreaded phone call for results. Hopefully it comes that night.

Faith

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