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…….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….


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



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.





A New Chapter In Life


When I started writing again almost 3 years ago, I never thought it would be about anything but updates on John John’s diagnosis. I lived, breathed, and died to cancer. My life crumbled around my feet like a sad trail of ritz crackers behind a toddler…… I am so happy to say that I was wrong.

I have spent the last several months investing  back into God’s vision for my life and where I have been called to serve. A lot of my creative brainpower has been spent in redefining my understanding of the reality of my circumstance. My son is deemed “terminal”, he’s not dying anytime soon. My role as caretaker is decreased, he is in school full time. He is more normal than I ever imagined he would be, even in my wildest dreams. I no longer surrender to panic at the onset of a weird symptom. I have come to take changes in stride and adjust accordingly.

I feel freer, if that’s a real word. I have sat and thought where I, as an adult, want to sew my seeds of love. My children is a given, my housekeeping duties are minimal and a given, but my passion for giving back is HUGE right now. I look back at every moment people have taken out of their personal lives to enter into my personal hell, and I am thankful. The people who sat for days at a time. Just to be there, so we weren’t alone. The way that God weeded out the helpers in promise only. The way God revealed where our spiritual home really existed in a lasting way. The way God divided out the people driven by the wrong intentions……It has left me with the here and now.



I have a few precious memories of acts of love that will forever stand out to me. They will not mean a thing to you unless you were the person who gave me the gift of love. 36 hours awake, tears awash with ramblings of faith in an almighty merciful God. $75 dollars worth of parking fees. Shoes to pace concrete floors in with no back pain. Hours at the gym digesting the world’s problems. Calls late into the night reminding me to breathe. Trips to onco appointments and MRI’s. A ride across the bridge into Philly because I am terrified to drive. The dinner date the night before an MRI even if my company is distant and I’m not really hungry. The words, “let us carry you.” The prayers on a time clock for 9 hours straight. Drive by prayer that opened up conversations. Sermons on healing and why? Click to hear that sermon. Wrestling with how to pray without knowing the answer. Dancing in a prayer and worship on the beach with a kid who can’t walk by himself. Being part of a basketball team. Finding a dream as a fireman to inspire healing. Pressing the siren for the first time and feeling like you control SOMETHING in your life. Having a firehouse as a playground. Smiling at a firehouse of your very own. Crying tears of joy seeing your child happy in a dream fulfilled……Having every accomplishment I have ever achieved dwarfed by the sheer will of a small child’s drive to win a battle he does not even understand.


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When I say I want to give back, I am trying to thank you for all I have learned in the last several years. I have learned humility in the face of adversity. I have learned to say yes to help. I have learned to celebrate the small victories in a HUGE way. I have learned to say thank you to the very smallest gifts. I have seen hearts opened and wounds healed.

This place I now stand is what I could have never dreamed of. It is normal again. Homework and baths are issues. Choices of clothing leave me laughing at my children’s sense of style. It is all how I imagined parenthood to be. I feel like I have a different child when we leave the hair salon. Target dollar isle always wins. I buy cheese sticks in bulk. I promise my child new soccer cleats once the season begins.


I don’t watch him sleep and cry over his peaceful body anymore. I kiss him goodnight exhausted of the busy day of activity. It’s just a good place to be. I discipline him for his arrogant assumption that he is always correct because he says he is. It is a good place to be. I am a parent. Of a normal kid. I am living the life I thought cancer robbed me of. And it makes me so happy to get angry over stupid things. I am free to just be a normal mom. The occasional interruption to normal is fine. An MRI here or Onco appt there. It is all relative. I will revel in the mundane and smile at how normal everything really is.


Thanks for all the gifts….each and every one of you… know who you are…..

All of my heart, Faith


An Intense Struggle Every January

I went to bed feeling quite accomplished last night. I woke up and felt immediately like the biggest yutz on the planet. This time of year is so weird for me. I find more problems with scattered thoughts and emotions….its a litter of a traumatized history. Constantly thinking back to what I might have  been doing this day 14 years ago. How I was about to get back my life. How the things that happened to us play out over the years. It’s P.T.S.D. cropping up like mad. It’s in the way a baby at church looks at me with her sweet blue eyes, or a photo that pops up on my timeline, subconsciously reminding me of what this week 14 years ago brought about. It is what the locusts have stolen from me. It invades my dreams and leaves me awake at 3 am praying my way to my morning alarm….my intent is to be focused and productive. I find myself incapable. Its an intense struggle.

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Evidence number 02-00414. The last moments where he smiled, slept, and God only knows what else. My heart bleeds into tears during church…I just can not help it. I don’t even know where it comes from. I try hard to be steady and hide my roller coaster. It always comes out in short comings and tears. Someday, it would just be nice if someone would join me in my tears and not kill me for my shortcomings. Not likes it magically becomes fixed the 14th. Its this weird process of transition from trauma to normal. It takes a lot to go from 1 to 2. Normal isn’t even normal even now. I have a kid with cancer. As much as I trust God, I still flash back to my first sons funeral. noah 040Touching cold plastic pipes surrounded with plastic bags, to keep the fluid in his corpse… kinda struck me as surreal. My tear dripped onto Noah’s face, and his makeup dripped from his cheek. I do not think anything can replace that private “viewing” when all I wanted to do was scoop him up into my arms and give him one last kiss………But instead, i watched what I thought was his face drip into a facade of fakeness………I gently stepped away from him understanding he was just a shell of what i wanted to remember.

At the end of the funeral, i threw every last memento out of my son’s casket. Where were these people when I needed help caring for him? NOWHERE. And yet, they showed up in droves for his funeral.

I will never forget sitting there, barely able to catch breath. Blowing through box after box of Kleenex not able to contain my sobs. I was loud and unsettling, i’m sure. My grief so deep. It penetrated every bone in my body. I was so grieved by my son’s death that it changed my being. It changed my very constitution. I will never forget that unforgiving line of fake sorry sayers. Where were they when community mattered to prevent this kind of tragedy? Uh, nowhere.

There was the whole “going through the D.a.’s evidence box” that landed on my doorstep after the man plead guilty to 1st deg murder to avoid the death penalty. He was a capitol offender. He had previously harmed my son, and escalated to intentional murder. He never aired a grievance to my knowledge. Never asked for help or said he needed a break. I never knew it was him watching my son.

I can count on my hands three people who where there when it mattered the most. And, one of them wasn’t really FOR me. the end. Welcome to my annual Jan.

Welcome to the bottomless pit,