Today Is My Favorite Day

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Today I talked to Mike Lintulahti, assistant coach, University of Pennsylvania Basketball Team. It was a funny conversation in a way. I needed something today, and he needed something today. We filled each other’s needs.

I was feeling despair and longing for a purpose. He was having a down day.

I answered the phone and was very happy to hear from him. We invited the U Penn Basketball team over for Thanksgiving. I had been waiting for a call. I am usually upbeat even when I am struggling. So, I answered happily. The conversation that ensued was epic!

I was reminded of John John’s purpose on this earth. “Every day is a day to celebrate life. There are no promises of tomorrow”. And it struck me how inviting the team over for Thanksgiving was a sign that I still live in this mentality.

I know John’s cancer is in hiatus, and we are so grateful to God for Him giving us the holidays with our son again. Every day is not guaranteed. Tomorrow is borrowed. But, to really LIVE every day is a purposeful way of thinking. We must remember to embrace celebration and BLOW IT UP! Which is why I invited the team to dinner. When we celebrate, it should be a CELEBRATION! Life is good! We are gifted with every breath. We should seek to celebrate and share our joy.

Joy is a gift from God. Joy is what most of us seek through this holiday season, and I have it! I am joyous that cancer is not killing my son today. I am joyous that I have a beautiful family and home! I am joyous that I have people to invite into our world to celebrate joy with!

Were going to have a fantastic time! Thanksgiving is going to be wonderful! And, moreover, I was asked to share John’s message with the U Penn Basketball team. His message of Hope, Joy, Living in the moment, Loving every day as it comes…..I think it is an honor to speak into the young lives of the basketball team. And to serve them as well.

So, back to the phone call. I encouraged Mike and He reminded me of my purpose. I am here to spread John’s message of hope to the people around me. He is LIVING with brain cancer. Living………Not dying….But living as a vibrant, beautiful, happy, fun-loving, hard-working boy.

Mike walked away encouraged, and I encouraged as well. Today is my favorite day. This quote hangs on Mike’s office wall. It is true if you choose that it is for every day. I just thought I’d share.

With Great Love,

Faith

Encouragement For The Journey

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I saw a request last week out there in facebook land for people to send emails to Aiden, the little boy battling cancer featured with John John in this news clip last year. He is terminal and fighting out his last precious days on this earth.

I yearn so much to give an open heart to other parents in my situation. I know the support given to me are like gold nuggets….I stick them in my pocket and pull them out when I need encouragement for this hard journey.

So, I wrote a short email to Aiden. I told him he is a fireFIGHTER. And that they know how to put out life’s fires. I put a small note at the end for him to tell his mother that my heart was with her. I don’t usually do this, but I put my phone number at the end. I don’t know why, I just wanted her to know she could reach out if she needed or wanted to.

I know there are times when I NEED to reach out. When I have hit my breaking point and all is not well. I just need to be heard. I prayed for this mother and her children. I have been for a year off and on again.

I received a phone call last night. It was Aiden’s aunt. His mothers sister in law. They were fielding all of the communication for the family. She expressed how much Aiden’s mother appreciated that email I sent. That it struck her as especially touching and she wanted to say thank you to me, but her son was dying.

My heart is breaking in a million ways for this family. I know what it is to have a child with cancer. I also know what it is to lose a child. What was expressed to me, was I encouraged this family. I gave them a little gold nugget to put in their pocket for later or whenever they need it.

Go drop a pebble into someone’s pond….see what happens…

With Sorrowful Love,

Faith

The Division In Belief

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Looking up a 100 ft ladder into nowhere….

This is where my husband and I stand. He believes our son is healed. I do not.

Hard place to stand.

He believes that if he has enough faith in God and Jesus ability to heal, that it is inevitable. He believes that even if he gets bad reports that he can pray them into nonexistence. He believes that if he believes he is healed, he is.

I do not. I deal in the real. I take everything for what it is. If God wants to heal our son, He will. I pray for this. Daily. I believe in what is right in front of me. I see the degradation in the scans. the halting of growth, and the expected growth.

This is not an easy one to write. Most people wont admit the fault in their marriage or relationship. Most people will not discuss the division of thinking or operation.

The reason I would like to bring this to the light, is because I know there are many other struggling families with differing opinions about what reality looks like.

I can not fathom my son dead. But, I do. Steve does not. I can not fathom the end. But, I know how it ends in most cases. I have nightmares about it. Steve does not. There is a realm he exists in that faith overcomes death despite facts. It is a realm I wish I understood. But, I do not. We differ on how we look at this situation in great detail. I grieve the lost parts of my son’s life already. The ability to do things other children do and the luxury of control over ones body. Steve grieves the lost hours doing homeopathic treatments. And enjoys the hours spent with the kids running around the softball field. I take John to therapy and watch him progress. I delight in that. I play with the children and delight in the rivalry. I stand at a different pose than he does.

I can not bring these thoughts to an end. I cannot reconcile the two sides into one conclusion. So, I will leave it as that……an unending…

with love,

Faith

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

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