Mom, I Made This For You


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My postings have been a bit raw lately. It has actually been a very good summer. I love it when the kids make things for me at school. I save everything.

Well, one day John John gave me this ripped up paper. At first, I did not understand what it said. So, I asked him.”Mom, I made you this sign. You keep it, ok? ” Ok, no problem dude.

I laid it down on my lap and depicted the lines of a song. It read, will you know my name if I saw you in heaven? Would it be the same if i saw you in heaven?

I think my heart shattered looking at that piece of paper. We don’t talk about it. When I hear of another child in my mommy cancer group, I start to think, what if it were my son? I can hardly look at some of the parents posts. It becomes so confusing when I say to myself, My kid is not going to die of this damn brain cancer. And then another child dies.

I only allow my brain to absorb as much as I can think about without crying. But, there it is on a ripped up sheet of paper…sitting on my desk. I cried.

Will you know my name? Dear Lord, my heart hurts for all of these kids. I know that John John thinks about it in the abstract. He somehow is relating it to himself. I think he is trying to get a little more understanding about death.

In this house, we do not talk about death often. Only life. I pray every day that it will never be John John. Life is so very precious a commodity in this house. We all have losses of different kinds. I was telling my husband a few weeks back about one of our friends in the cancer groups. A little boy. It took three weeks from when the cancer all over his body for him to get his place at Jesus feet. I saw that look on my husbands face. We were both thinking the same thing. He said one simple thing, “I can’t”.

I can’t either. there came a time that this whole brain cancer thing became not a thing in our house. We’re all so normal. Our family is what we spend time thinking of and living. Dying is just not part of it. MRI to MRI sometimes holding our breath. After an email or phone call, a sigh of relief, were back to normal. It’s intensely normal. School, homework, church, fun stuff to do, new things to explore. WE ARE NORMAL. At some point we have been desensitized to the words that are suppose to describe our son. He is not cancer. His name is not brain cancer. His life is not on a timeline any doctor can find. We are not measured, labeled, or succumbing to anything cancer-related.

I can’t explain why he handed me that sheet of crumbled, phonetically spelled words.

“Of course John, mommy will know your name in heaven. We will both be sitting at His feet. Everything is fine though. Ok?”

“Yeah Mom, I know. I love you so much.”

“I love you so much more than you really know.”

Faith

 

 

How Are You? I Am Fine…


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I have been noticeably absent for the last few months. It seems that the complexities of my life have engulfed me, chewed me up, and spit me out. Exhaustion and apathy have won. The veritable pace I have been living life at has come to a much needed screeching halt.

I sit back and think to myself, how do you really bring people far enough into your world that they can catch a glimpse of understanding? I was driving to my shrinks office today, letting my mind wander through traffic lights and cars speeding past. I sifted through the layers upon layers in my heart and tried desperately to turn the images in my head of layers of happenings into words. I sat with the realization that I live most of my life absent from the present.

I sit so comfortably in the spectator’s seat with a front view of my own life, detached and ambivalent. The words that seep out of my mouth are just words. They have absolutely no feeling anymore. Exhaustion. Cancer. Terminal. Hurt. Devastation. Dissolution. Hopeless. Despair. Time flying by and slipping through my fingers into yesterdays in a fleeting pile without any recognition of meaning.

I have become so comfortable with not feeling anything. I have become a ghost in my own life. I have been too happy to just let joy go out the window with fear. I have become content drifting on the wind, happy to mean nothing to anyone. Pleased to disappear into the time voids in between work.

When the hell did life become so damm painful. When did my heart get so thoroughly obliterated that it no longer feels? How the hell did the horror of the bad eat the good right out of existence? I am just not sure. I sit here and try my damnedest to feel something again…Tears. It always comes out in tears. Hot, burning, painful life. I simply can’t remember the last time I felt joy. I catch glimpses of it every now and then. It is so fleeting, like a whisper of silk softly kissing my soul in the form of a distant memory…

I am learning how to cry again. I am learning how to feel pain. I am slowly clawing my way up from the depths of despair and hopelessness. I know that with the fresh deep pain of my life, will come joy.

I am just going to leave that right here…

~Faith

That Pesky MRI Dance


This summer is almost over. It is hard to believe. Two weeks from tomorrow and I will be taking those cheesy first day of school photos.

So, I will start with the big news. STABLE MRI! Whoah, slow that down for a min. What does that mean? Technically, John is terminal. He was predicted to be dead two and a half years ago. Technically, John’s cancer began to spread again 2 years ago. Technically, stable means that cancer is doing absolutely NOTHING. It is not behaving as normal brain cancer would. It is just sitting there hanging out…….for over two years. What does this mean? PRAISE GOD, THAT’S WHAT! Here are some photos…..My favorite photos of the year.

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The first photo is of his original tumor we discovered on May 29th, 2013. What you are looking at is the right side of the photo. That huge mass full of black spots that is slightly brighter than the gray surrounding it is his brain cancer. The left side of the brain has a big black hole. That is his ventricle. It is blocked and full of fluid. It should not look like that. If you follow the midline of his brain, it is physically situated over his left eye (its actually opposite of the MRI, but for simplicity purposes we will use the left and right of the MRI image) Follow the midline and see how it is pushed all the way next to the ventricle on the left side? That’s how massive his tumor was. 2016-08-16 11.34.39

The second MRI image is the day after surgery. There is only a tiny rim of actual tumor left that is indistinguishable from the white you see. The white you see is not cancer, it is blood and inflammation. The giant hole on the right is where that tumor was. The space in the (top) front of his skull is full of fluid. His original tumor bed would over a year collapse and his brain would readjust itself. See how smashed up his brain was?2016-08-16 11.36.10

The third MRI images are hard to get a close up on. The two side by side images at the top of the screen are of the same plane of the brain. On the north edge of the black circle where his original tumor used to be is cancer that has been sitting there for over two years. Doing nothing. Obviously white, obviously cancer (from what the Dr. says), and kind of looks like a puzzle piece. Here’s the thing. These two images, side by side, are 8 months apart. He is a miracle. Even a slow growing cancer would not stop multiplying for over 2 years.

He is a miracle. This, folks, is what God calls a miracle. These images are proof that God still does Miracles. I will shout it from the rooftops till the day I die. No chemo, no radiation, just surgery, lots of prayer, anotinting, trusting God, and waiting. BTW, he has anaplastic ganglioglioma. Google the cancer, it is one of the deadliest on the face of the earth. I don’t claim to know how God always works. After all His ways are not ours. But, God stopped it in its tracks. Its insane for me to look at the evidence that my son has terminal brain cancer with regrowth, and its doing nothing.

When people ask me how my son is doing, I kind of get stuck. Then I break out into Praise. It really is amazing. When I tell people he is fine, they are amazed. 24 other people were with me in the room the day he had surgery and heard how horrible the news was. I know that this testimony will reach far and wide. God’s grace and mercy are abundant. He knows the desires of our heart. He hears our prayers. He loves us deeply. Some folks think that they have to give their kids over to God at 18, when they drive away to college. I learned I had to give mine over from the beginning.

Much love, Faith

When It Looks Like Your Kid Is Givin Up The Ghost


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So, today was a routine MRI to check for new brain cancer in John John. We have had so many debacles with the hospital. They classified him for general anesthesia only. Uh…..no….that is not happening. I fought for three weeks to get it acknowledged that he is indeed a candidate for the propOfol protocol at the Berger Center at CHOP. So, MRI scheduled for today.

Now, we have had emergent reactions to pentobarbital for a year now. I finally put my foot down and said never again. It was terrifying for me and for this poor kid. I have been punched, kicked, clawed to blood, and head butted during emergent reactions. They last an hour or more. It is an emotionally draining, physically daunting, horrific event that your child has no memory of. But, dear Lord, I do remember. Nothing like getting a shiner from your kid. He almost de-shirted a nurse. Hell, on a good day, like today….he ripped a nurse’s gloves to shreds because of fear over an iv. This kid has been through hell and back. I don’t have any other way to say it. It is trauma. He has been traumatized. From the age of 3, he has been in a world most adults can not cope with. He is scared. Of course he is. I am too.

I MRI alone. Steve thinks yelling accomplishes a lot. It does not. It makes John worse. I can at least calm him down when it’s just me. I know the ropes and how to set expectations and such.

Today was a new deep sedation protocol. It is the best around, the propOfol protocol. Minimal drugs. (one). Shorter recovery time. No more taking home a drunk kid. But…

The IV didn’t go well, even though he was prepped to the max. An hour after his scheduled scan, 6 people, including me had to hold him down to get the iv in. It was a moment I almost lost it.

Rule #1 : Never lose it in front of your child

So, IV in……I watch them hook up the more complicated IV lines than the normal set up. I ask the dosage of the propOfol. 40mg bolus. I am happy they rounded down. But, I did not realize that how fast they pushed it made a huge difference in reaction. I know the half-life of the drug is relatively short. I have even had it. But, not when I was 7.

Oh My Gosh. I am pretty sure they pushed it too fast. His back arched, his eyes became as large as saucers, and he whispered, “help me, help me, help me”. Dear Lord in heaven. I held him and spoke softly in his ear. I could only assume he felt as though he was falling. I whispered “mommy has you, you can’t fall out of my arms. You are safe and everything is ok.” And in 20 seconds he is unconscious and in the Berger Center, they are exiting you out of the room. I wanted to stay to watch him recover from the expected apnec pause after a bolus of sedation. Nope. Not allowed. I stayed. I held his head and pulled up his gown. I watched for him to breathe and when I was ok with his sedated state I left.

I just can not process beyond that right now. I did not get same day results like I did with Dr. Kang. In fact, we went to the clinic and Dr. Waanders told us it would take two or three days for results (calling bullshit). Dr. Kang always called us right away. The anxiety builds and builds.

Your mind wanders into the places it shouldn’t. Does the barometric pressure cause headaches in him? Does he need serial casting for the changes on his right side? I have given him Motrin 9 out of 17 days, is he having rebound headaches? Is he dying? Is his tumor back? Is this nothing except worry? Is his falling more often because he needs more physical therapy? Is he ok? Is he living or dying? Are the holistic treatments working? Am I giving him enough fresh squeezed juice and veggies? Do we need to beef up his supplements? Oh Dear Lord, you know my mind can go a million miles an hour.

When there is no direction, blazing a path can seem like an impossible thing. But, with God ALL things are possible.

I think next time, I will ask for his drugs to be pushed much much slower.

I am exhausted, Faith

 

Things Have A Way Of Happening


This post is very difficult for me. I am trying to not disclose what the real deal is. I lost my car this week. The red wiggles van. We are downsizing. I am very sad to say goodbye to the only new thing I ever owned. so, goodbye red wiggles van….

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I am sad and sorry all at the same time. there is no sadder than i am now.

Faith

 

This Beautiful Mess We’ve Made


I have struggled since November with some sort of elusive illness. It has attacked my left shoulder and elbow. It has gone into my chest and back on that side. It has since traveled to my other shoulder and hips sometimes. It is an agonizing pain that does not let up. It hurts me to my very core and I have limited life function since this has happened. I have not been able to type or relay the massive miscommunications turned into personal vendettas this has caused. It has been a mess. A real mess. Of personal relationships I did not understand the misfirings of and vindictiveness I never fathomed. I have an unknown autoimmune disease.

John is doing wonderfully. I need to interrupt my 40 -50 apts trying to get into Penn medicine to meet his new oncologist. Tammy Kang has relocated to Houston after her fellowship at CHOP. It is ok. I need to figure out his next MRI, but after I take a break in Texas. It has been a long hard ride. I need to spend time with my father and my daughter.

The kids are wrapping up school and today I am reminded, God is FAITHFUL……three years ago today we went strawberry pickin with friends and this happened. Three years later after a diagnosis on one of the most aggressive brain cancers on earth…..we outlived the 3-9 months sentence, by three years…..Life continues on. John has completed the first grade with a modified curve. He needs to catch up in reading the most. He is still at a kindergarten level of phonics. I found a free official reading program that he gets for free because of his terminal illness and missing school. I also have Ann Lewis to help tutor him through the summer so he can catch up. The toss up is whether he stays in Mrs. Gross’s class or moves on to Mrs. Tower’s class. His report card will read second grade regardless because of his IEP. He needs strategic location on the first floor of the school. He has hypotonia, which means he has generalized muscle weakness. Up and down those stairs is a hot mess 6 times a day when you have a leg brace and you can’t feel one foot. We must allow him to make the choice based on his modified social status. He needs to feel he is learning and with his peers. I will allow him to make this decision.

My best friend since I was in the single digits bought him a touch screen computer for school. It is pretty damn awesome. I never planned for education. I never saw John John alive for three plus years past his diagnosis. Praise God for even in my unfaithfulness…..HE is here with us always. God shows up even when we think HE will not. John John is provided for by Gods grace and Julie and Scotts generosity. John can catch up with his reading through the summer.

I will leave you with some photos of field day. You will love them. The kids had a great time. Thank you God for a school that wanted my kids. We are a hot mess, a beautiful mess for sure…….

With love, Faith

Funny Funny God


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So, my day was legitimately defunct today. But, we serve a funny funny God. Sometimes I think my tears of sorrow will never stop only to find myself laughing. You know, I am passionate about feelings. I don’t think people who have never been to the abyss can truly say they know the top. When your at the bottom, the only direction you can look is up, right?

So, in my memories today with my face truly sucked face first into facebook, there was the stark reminder of a day 5 years ago that ended in death and agony. I am a person of paradoxes, I’m from the south after all. I was 22 weeks pregnant (call it nesting) with my husbands friend in the back yard jackhammering fence post holders into the ground for my kids soon to be dream back yard. I’m kinda like bob villa sometimes. Anywhoo…..we came to a point where I had to leave and go to my ob appointment. So, I warned my husbands friend to not let him do anything bob villa-ish and I was off. (my husband and tools DO NOT MIX. I carry the chainsaw in this family).

I knew my baby was a boy, we were going to name him James. I really didn’t think anything of my appointment. It was a routine thing. I knew James was going to be handicapped. I had already found a doctor the previous week to examine him after he was born to see what we could do to help him. His right thigh bone was half the size of his left and he had no hip socket. But, baby #5 I was cool as a cucumber, me and my hydraulic jackhammer.

So, I got to the appointment and the baby was dead. But, that’s not what I want to talk about. I want to talk about the sorrow I experienced today when I saw that memory. I know, I kinda threw you there. Just stick with me.

Today was the kind of pity party you throw when you’re already in a rotten mood. The kids were a hot mess this morning. No one wanted breakfast. The bus matron caught me and made me talk, pre-coffee. My husband woke up in a very normal complaining way. I went back to bed to facebook surf until he left. Great way to start the day. Eh. Then I opened up my memories. James. The photo of the fence. Terry hugging me. Dr. Mama telling me he was dead. The hospital bed. The lady asking me if I wanted to hold him. But, Dr. Mama told me they had to take him out in a “destructive process” so I could possibly have future children. So, the lady asking me if I wanted to hold him left me a sobbing mess. It was all of the memories at once.

I instantly remember Terry’s face. That hug felt like my mom that day. There are just some things that stick out in your memory. I needed that hug like I needed to breathe. The memory made me cry. So, I went back to sleep. I woke up when my husband got home from softball. I grabbed my keys and left.

I was not in a sharing mood. I drove to the school to pick the kids up for John’s last physical therapy apt until summer. I took the kids to I-Hop to eat on the way. I had a kind sweet waiter. Walkie. Yes, my kids called him walkie talkie. That did happen. I sat down and ordered a diet coke and two waters for the kids. Then, as if the convoluted world wasn’t enough of an assault on my day, Rachel Plattens “fight song” came on. My kids errupted, my hands were flying for my camera, and the waiter was approaching to take our order. I’m completely one handing him, “wait, I have to get this photo”. Of course, I have to explain.

There’s this whole undramatic way I tell people my kid has brain cancer but it’s ok because God has that thing….I watch people go through the whole range of emotions and confusion in like 30 seconds…..I kind of feel like I should apologize to them at this point because I am not really feeling it. So, usually I apologize to them and tell them it’s ok and they don’t have to be sorry…just remember God is in control. Just look at my son, he is a miracle right in front of you, made by God himself. It’s ok. Just don’t forget that God writes the stories.

So, as if that wasn’t enough there was a woman eating alone behind me. (I randomly go to restaurants alone to simply have some breathing room). She was totally owning Adele’s “Hello”. So, I looked over my shoulder and told her she was owning it. We struck up a conversation. She was sweet. She asked about my kids owning “fight song”, and in my undramatic way I told her about my son. I told her about my daughter’s sweet heart and donating her hair. I told her that God lives here. I told her God is our God. We ate our food and she left.

Walkie came over and explained to us that our family of three that ate like five (the kids ordered a second meal, every calorie counts!) ‘s meal was paid for by the woman owning Adele’s “Hello”. I broke down into tears and the waiter did too. We cried and hugged.

I thought about how God showed up in my day and wanted desperately to leave Walkie a hefty tip. When I went to the register, he was there. I told him I wanted to talk to the manager. He wouldn’t let me. He wouldn’t even let me leave a tip. I had no cash and wanted to leave him a tip on my credit card. He told me everything was taken care of and I could just be ok with that. OMG….

I walked out of the doors of I HOP and literally ran into a girl wearing a hoodie that said, “just pray”. I stopped her and told her and her boyfriend about what had happened and asked them to please bless someone if they felt lead. They replied “God put us in the right place”.

You just can’t make this stuff up.

Faith