When your in the in between

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John Marandola-37

There is this place in cancer land that happens between MRIs, it’s the in between. Nothing is real, every possible symptom is the enemy. Can John John’s leg be “therapied” into cooperating again? Is his loss of bladder control because of a met in the spine or developmental? Is he ok? or is he not? The pound that he lost, was it all muscle? Is that what is causing this loss of control of his leg?

As a parent, we just don’t know the answer to these questions. These are the things that run through my head on a daily basis. These are the things I ask myself as I choose underwear or a pull up for my son to wear today. It’s very conflicting…I don’t know how to think anymore or how to act. I work myself into a state of worry only to go to an MRI and find out the cancer in his brain hasn’t spread any further. But, there’s no peace from this information because the Dr. presents the possibility of a tumor in his spine.

I watch my son drag his foot, and I have flashbacks about how this all began. His right foot began to turn inward toward his left foot. That was the first symptom of brain cancer. It was an observation that changed our lives.

I can not help but watch him drag his leg in horror, not knowing what is causing it.

I haven’t been able to pen my thoughts for a while now, because im so confused. I decided to take a mental break from cancer for a while, and try to reset my mind about the whole thing.

here’s what I came up with. John is still here, no one thought he would be. Yes, he is dragging his leg and wetting his pants. There is a possibility that things are worse than they appear. But, I’m not going to live in that reality right now. The reality I am going to choose to live in is, that John is a child struggling in a very real way right now with frontal lobe brain damage. That is more of a challenge than you may realize.

He is hard to keep emotionally stable. He melts down over the simplest things. My greatest victory this week was when I put green beans on his plate and the whole dinner did not dissolve into crying and thrashing about on the floor.

That is more real than the possibility of a tumor in his spine. That is to be categorized as a worry, but not put on the front burner of my mind. I have resolved to focus more on his day-to-day life and helping him to control his emotions.

I feel strongly that cancer will kill him eventually, I have prepared my other children for this. My husband and I are on opposite ends of this debate. He swears The Lord is going to heal my son. I have doubts.

We are in the in between, where nothing defines reality more than your thoughts. We try to be kind to each other and deal with the problems at hand. But, the in between is a very vast landscape that includes doubts and fears.

John is happy, Hope is happy. We’re going to stay right there while we’re in the in between.

With love,

Faith

Soul Splitting

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It has been a long while since I have posted. Christmas has passed, John John had his next mri, we have ripped our hair out, and been up and down at alternating moments. Oh, where to start? Let me start before Christmas.

We had carbon monoxide in our house right before Christmas. (we didn’t know it was in the house) We all experienced different issues. John began to have severe headaches, vomiting, nausea, and quit eating very much. Steve and I felt dizzy and tired. We were lucky we didn’t die because of the problem.

So, the focus is always John…what is he experiencing that would be red flags on the brain tumor list. We had three solid checks. Nausea, vomiting, and headache. Classic brain tumor symptoms. We simply were beside ourselves. Steve praying and rebuking it. Me taking stock trying to decide when the right time to call the dr. was. Always the doubter in the “miracles” that God is going to bestow on us. I say this not in mockery, but in reality. we have a child who had stage 3 brain cancer, it has since spread to stage 4. Next comes all the complications from stage 4 and what inevitably comes after.

We knew the mri was coming. We waited it out through Christmas, determined to get another Christmas under our belt before any potential bad news. We worried constantly about the nausea, the weight loss, the vomiting….not knowing what was causing it. Steve brushed it off most of the times. We had a few “come to Jesus” meetings over the course of the Christmas break about what could be happening. I let him know where I was, he let me know where he was. It was very scary. We all were hanging on and waiting for the dreaded mri.

I squirreled myself away in my office for weeks with the kids. We watched movies, read books, played games, and just hung out. Steve went to every church he could. I quit going to church. I couldn’t handle the questions, the repetitive story of our reality when I was so worried, the answers of, were praying for you. Normally this is a welcomed response. But, I wrestled with God. In every way a person could. to my tired mind and heart, prayer is always happening…I am always talking to God, but I don’t know to what end lately. I have fasted, I have prayed, I have pleaded, I have begged, I have strayed….all with the same results. It has split my soul, so to speak. I am fractured and my identity blurred.

I don’t know any longer what I am to hope for. Life or death? I don’t even know which is greater. Earlier this month I saw my son dying…with all the red flag symptoms of brain cancer….I resigned myself to his dying….is that so wrong? I certainly couldn’t share it with anyone. I’m afraid of judgement. Would it be so bad for my son to forbear pain and suffering to die quickly? Simply to be put into the arms of God? Or should I wish more time for myself to grow him up in this god forsaken world. Only to worry if he is going to make the right choices and end up with a long life in the arms of God…..

I know my thought pattern is fractured. I am well aware of that. I haven’t blogged in so long because I am struggling with many of my views.

so, anyway…the MRI…it was horrible. we had a nurse that couldn’t land an iv into a 5 mile wide pond. After the second stick, John’s frontal lobe brain damage kicked in and he lost control and couldn’t regain it. The nurses wouldn’t listen and stuck him twice more, he blew both iv’s because he has frontal lobe brain damage and it causes a serious lack of impulse control. if you stick a 5-year-old 4 times with a needle and tell him he is supposed to be ok with it, it’s already a lie. You stick a 5-year-old with frontal lobe brain damage with a needle 4 times and he will tell you he is going to kill you and try to rip off your shirt, kick you, scratch you, and head butt you. I got lots of looks, like….your the mom of this horrid kid. smh….yep, I am….

f.f. spare you the rest of the horrid details. The mri was very close to the last one three months ago. results wise. not much growth. the kicker is…john is dragging his right foot and has lost his urinary control. the dr says this could be a metastasis in the spine causing this.

Again we have half an answer and have to live on the edge of worry. I just don’t have any more to say for now. Perhaps I will post some photos in the next few days.

full of contradictions,

faith

Cancer And Christmas

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There is a bittersweet feel to Christmas this year…I’m not very confident about the next mri coming up on Jan 8th. I am haunted by it actually…I find it very hard to put my feelings into words right now.

I feel a mix of trepidation and fear….this is the great not knowing…

we wait…..we wait…..

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with love,

Faith

To Gather My Thoughts

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There has been so much going on this Christmas Season that I am finding myself in a whirlwind of activity and emotion. Let me see if I can break this down a bit and give you a window into our world.

Thanksgiving was wonderful…we had two. One with just family and one with a few of the UPenn basketball players. It was a sweet week filled with lots of conversation and food. John was the master of activities of course and the center of attention. The fellowship was unparalleled. We had Darnell, Greg, Jamal, and Mike over from UPenn. We played pool, ate, talked about every topic known to man and enjoyed each other’s company. In January when UPenn plays Villanova, John will be inducted into the UPenn basketball team as an honorary team member. So, be on the look out for that.

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With Christmas upon us, the usual activity has ensued. Shopping, parties, Christmas light looking, cookie delivering, and the usual holiday cheer. This year we have something more going on. Fireman Jim nominated John John for a dream bedroom makeover. We are preparing for the Corner Kingdom Project to give John’s room a dream room makeover. They have amazing plans (no spoilers) to create a fire truck kingdom for John to retreat to when the world is more than he can bear, and to just enjoy on a daily basis. They are going to tear apart our playroom and create a bedroom for John John and Hope to enjoy, with elements to accommodate his special needs and make his life easier to live. The fireman will be doing most of the work, and the UPenn basketball team will be helping with demo.

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We have been struggling a bit as well. John is struggling with some issues that have raised red flags on our radar. He is experiencing headaches, vomiting, night terrors lasting for more than an hour where we can’t wake him up (this is terrifying), and extreme fear. He won’t go to the bathroom alone, he won’t sleep in his own bed for the whole night, and He is just in general very fearful of being alone.  We are not sure why all of these things are showing up at once, but it begs the question. Is the cancer spreading? We don’t know. We worry, we debate, we quietly think about these things when they happen while keeping our grown up faces on.

Personally, my heart is breaking. I see my child transforming into a fearful, clingy, tearful little boy. It is mixed with perfectly normal afternoons here and there. He is eating less lately. My mom radar sends up red flags there too. I can’t bring myself to move the next mri up any sooner than the first week of January. I just want Christmas. Call me selfish, what does it matter if there is a new tumor or not. I want an unblemished holiday with my whole family. An untouched memory of Joy. I want surprises and surprised faces as they open gifts and we go to church to celebrate Christ’s Birth. Then we can deal with whatever this is.

As I shop, make cookies with the kiddos, and create memories…there is a weary part of me that says with cynicism, this could be it Faith. This could be the last one. And yet, it is a beautiful commotion of love and giving. Just as it should be.

John can not tolerate a lot of the homeopathic treatments we have been using in the last couple of weeks. Its nothing harsh, just supplements and tinctures. But, the vomiting is stopping him from taking them. It is a huge source or sorrow and frustration for my husband. He is intent that these remedies are the answer. And, I don’t disagree…I just wish I had a window into my sons brain to know what is going on.

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So, it boils down to a lesson in Joy. Joy often comes mixed with sorrow. Expectation mixed with trepidation. Fear mixed with hope. It is a conflicted world we live in and there is Joy to be had. We grab for that. We hang on to it. There is hope to be had. We grab and hold on to that. We are intent on enjoying this Christmas and dealing with the MRI the 8th of Jan. We should know the results the same day. I sure hope I find time to connect with you in between.

Filled with HOPE,

Faith

 

Today Is My Favorite Day

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today

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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John Marandola-78

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

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