Getting back to a normal life

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Its been 11 months since John’s diagnosis of brain cancer and his death sentence of 3-9 months to live. we spent a lot of those months helping him rehabilitate from his surgery and all the brain damage. It was a daunting schedule of appointments and obligations on my time. as I previously said here, I lost my identity.

So, I went home to Texas. I went to comfort, my family, my roots. I put my boots on and my bling and remembered who I was. My name is Faith, I love country music, I enjoy dancing even if im not good at it, I love karaoke, I like cigars, I love to read, I also love to shop for my babies. I have a deep heart that loves with a passion. I take relationships very seriously. I care about the details of life. I love to take pictures, I love nature, I want to photograph every beautiful thing. I like to sing when no one is listening, I love a good bourbon. I love my ex mother in law, shes part of my family. I remembered that my family extends beyond the border of natural family and that I am a very well-loved woman. I like to ride rollercoasters, I love to see new things and be spontaneous. I love life. I love beef jerky and good food. I like road trips that have no destination. I love sundresses and the wind on my skin.

All it took was going home to remember who I am. This 11 months that I experienced was horrific and riddled with emotion that will take years to process. And I am ok with that. I feel like I am on even ground again. I know that it could all change with one mri. And that is ok too. I know how to live IN THE MOMENT. It is what carries me. By Gods grace I can cope with life as the appointments have finally slowed to a crawl. I can finally stand being in my own skin. It was a rough transition into normal life. the new normal is good and I can now settle in with contentment. Everything in the universe is ok. The world is not crashing down around me and I don’t have to stand in pensive expectation of disaster any longer. My world got bigger again and I have choices. I have three children to focus on and a lovely relationship with them that I cherish.

The photo is me in Texas with my oldest daughter in the traditional Texas spring blue bonnet background. I love home. It is always so refreshing to go back there.

With Love, Faith

P.S. John is doing wonderful right now…

scars #2

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The more I think about the scars my son’s head hold, the more I think about how deep they run. It is inevitable. They hold weeks of pacing hospital floors until my back hurt. they hold months and months of pent-up anxiety, until my hair fell out. they hold years of marriage disintegrating in a few weeks time. they hold a sweet secure daughter on the precipice of folding. A house that stopped all at once after strawberry picking. They hold the story of a life well-built, unfolding quickly…in a matter of days into chaos.

Everything I once held dear, my garden, my children, my time watching them grow, my marriage, my world, my friends, my well constructed life……gone. In a flash. All contained within a scar. That dear boy’s head contains the remnants of a former life filled with fluff.

His scar is one that makes me remember how I used to fill every minute of every day with SOMETHING. I never rested in the quiet place or tried to be still.

I was building this

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Instead of paying attention to this

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or building this

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instead of looking at this

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oh crap, marriage….that thing we used to do before we had nothing but save your butt mode…oh yes…. we used to kiss, we used to sleep in the same room before our brain-damaged son wandered the night. before we were afraid he would kill himself trying to get down the stairs. oh….maybe its time to move back in and make the word right again……life has been fractured in the deepest way. we still have not put ourselves back together again…not yet, but were starting…

perhaps this year, with a lot of gumption and tears, we can glue back together our lives…..its about choices…not this,

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but this….

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I love my kids, and I love spending time with them. It has been much underrated by me in the past. This has all changed now.

These times are different and beautiful. I feel like my family is the center of my being.

Love Faith

Scars

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Today I shaved my son’s head. Just a routine hair cut. But, I saw the scars from his surgery and they left me floundering in pain. 7 inches from forehead to crown, then the hole where his brain fluid drained right after his surgery.

Stark picture. I know. But,  When your shaving a head, you see every bit of oddity. When I was done, the scars were barely noticeable to the untrained eye. I used a number 2. The shortest I dare use with him. I used to always use a number 2 before his surgery. Today it was a risk. He could have been walking around for two weeks with a long line down his head. A scar. A badge of honor, if you ask me. But, a stark reminder that he is different to his peers.

There are so many scars that run deep from that scar on his head. Scars on our hearts that are still a bit raw and well hidden. We have to deal with the fact that we almost lost our child. Amidst the victory of 10 months into his diagnosis of 3-9 months to live. The fear still runs deep. The many sleepless nights at his bedside wondering if he would suffer a stroke, or his brain pressure would be out of control, or if his post op mri would reveal new growth.

They are memories, they are scars. They come embedded with emotion and investment into our childs wellbeing. It was a difficult time. One wrought with so many worries. So many memories of pain and endurance. How would we overcome this? How was our daughter going to withstand the pressure of this situation as a 5-year-old? How could we actually come together long enough to come to a decision about our sons treatment?

I looked at those scars on his head as I cut the hair away, I remembered where we have come from. It was a long road. It is a long road. You barely notice the scars on his head. Our scars are well hidden to the outside, but still raw in this house. It is hard to bring a divided house back together again. I cried as I shaved his sweet little head today. I cried tears of remembrance and healing. Tears that remind me of the blessings of today. The pain I still feel when I remember where we have been.

It was just a haircut. It was just a number 2.

It may take years to recover from the scars of this ordeal. now that we are on the end of Grace, we have time to heal. No tragedy is without loss.

Love, Faith

How do we make sense of brain cancer that dosen’t follow the prognosis?

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There is a giant tumor…life stops….surgery….the aftermath….the rehab…..the brain damage….then NO REGROWTH?

The doctors told us our child had between 3-9 months to LIVE. We took this blow and lived as richly as we could. it has become a culture within our home. But, 9 months have passed. The doctors are scratching their heads over this.

We praise Jesus for the miracle! We continue on in our fashion. But, what about what the doctors said? It is a nagging thought in my mind. I mean, let’s get real here….John was supposed to be dead by now. Gone. Finito. But, praise God he is still with us.

None of us really know what to say. It could be the homeopathic treatments, it could be a miracle from heaven, it could be chance, it could be that the stars shone beyond a certain rock just right. Sheesh. It could be any compilation of things that allow him to live. All I know is that we can never change what we are doing.

Spending hundreds of dollars on homeopathic remedies and keeping him on a rigorous schedule of treatments. Its daunting financially. It’s hard to imagine feeling comfortable with him being here enough to back off the homeopathic treatments. I’m sacred that if we do, the small amount of tumor left in his head will regrow. Or God forbid, spread.

Were between a rock and a hard place. For a change, ill say it’s not a bad place to be. But, let’s get real. No one has ever survived anaplastic ganglioglioma. No one. Not one.

This means nothing to me at this point. I choose to live in total denial of what reality might be. I am going to say he is healed until a doctor says he is not. That’s just how this one is goin down. I have settled down into the “all clear” we are so used to getting.

Believe me, ill know if it comes back before the doctors do. This mama is a details ninja. I know every little move they make. LOL! I also know when my child is changing. morbid. I know. suck it up buttercup, this is my reality.

Ninja mom, Faith

I lost my identity

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We recently went through evaluations with John to see where he was in physical therapy and occupational therapy. The decision was made to cut down to only two appointments a week. We used to have four to six a week. Between 2 and 4 days a week was spent driving to appointments and waiting. Oh the waiting. I have definitely learned patience through this ordeal.

Man alive was this adjustment harder than I anticipated. I expected to really get a chance to unwind in the extra free time. It produced the exact opposite response. I spent 9 months with no life outside of appointments and John’s progress. We were tenacious in his rehabilitation. It usurped my identity completely. I simply forgot how to be me. During the rehabilitation period the precious little free time I had was spent with one couple who watched my children during various appointments. That was the whole of my life outside of the rigorous schedule I had. Now I don’t need the extra help, so my time with them is few and far in between.

At home I found myself simply walking circles around my house not sure what to do with myself. I suffered anxiety. I cooked a lot and for the life of me, I couldn’t think of what else I used to enjoy. I felt lost.

We did a lot of family activities during this 9 months, which was wonderful. We learned a new way to enjoy each other. But, I forgot how to be content within myself. I prayed a lot about this and what to do about it. I agonized in my free time about the anxiety.

Slowly over the last few weeks I woke up. I created a new routine with built in free time for myself. I borrowed a few books from a friend and remembered I loved to read. I kicked up the homeschooling a notch and remembered I enjoy teaching. I bought seeds and started my seedlings for my garden to prepare for summer. I found little by little that I did remember how to be content and enjoy the quiet. It wasn’t easy to transition back into the realization that appointments are not my identity. Yes, I am a caretaker of a child that requires a lot of attention and time. Appointments are necessary and have their place in my world. But, I am still me. I still have a need to nurture my soul, have hobbies, and enjoy life.

My identity is not gone. I’m still here, after 9 months of driving 1000 miles a month. Appointment after appointment. I won the battle. I fought the good fight and will continue to do so with as much grace toward myself as I can remember to have. I will endeavor to remember to have free time is a blessing and can serve to enhance my relationship with my family and make us stronger. I remember who I am

Love, Faith

P.S. Johns most recent mri showed no regrowth of his brain tumor and he is doing wonderfully. We are past the 9 month mark and his oncologist doesn’t want to see him until the year mark. We will be picking strawberries to remember what we have been through and how Jesus has blessed us. Strawberries is where this all began. Read about it here.

the 16% percentile

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What on God’s green earth is the 16th percentile in fine motor and cognitive skills? I know I heard the words and explanation. But, my brain stopped at 16% and below 20% you are eligible for an iep. Which is a pc way of saying special ed. Yeah, we knew this was coming.

What can I say? My poor son had a tumor over half the size of his head. That means more than half of his brain was damaged. Horrible blow when you begin to think you have beat cancer and start looking at life. huh…

Ok, he is 4. We have time. But, I don’t know what to do with it.

When I know what needs to be done, I am an animal. I am a beast to be reckoned with. I will pull no stops out to accomplish what I need to. Come life or death. We WILL DO THERAPY. sigh, so…..

We are going from 4 therapy appointments a week down to 2. He has plateaued at much of what he is doing. I am extremely grateful that he has gone farther faster than anyone predicted.

I’m scared that he plateaued. I am terrified that this is what I must contend with as a mother. no, my child is not a monster. he has challenges and I am always scared of the unknown. I like to be in control. I want to help him be more normal. pshawwww….if that were a thing.

his challenges are his brain integrating what his eyes sees and writing them on paper. He takes longer to understand things. it seems to me the routine is the only thing that helps him learn new things. A new landscape of constant learning is going to be very slow for him. He has a memory like a whip. But, frustration almost always brings about a diversion of attention for him. If he doesn’t understand it or it’s too hard, he gets silly. If that doesn’t work, he melts down.

If he melts down, that is a whole other thing to stop it. He crumples on the floor and cries real tears. It’s a hot mess…..I am a hot mess at that point. who are we kidding. were all a hot mess at that point. me and the neighbors. Cause, we can hear this kid 5 blocks away sometimes.

it’s a thing.

Enough for now,

Faith

The day we officially beat the odds

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Exactly 9 months today we were doing this. And then this happened to us.

We have been through a long 9 months. We were told our son’s prognosis was 3-9 months to live. We have celebrated in our own small ways every day that has passed. We have vacillated between hope and despair. Between believing he could beat the odds and sheer terror during the moments we saw him slipping backwards. It has been a long long 9 months.

Today we celebrate! Nine months ago today we were told our son had a massive brain tumor and a death sentence was pronounced upon his life. A short period of time that we were expected to watch him wither away into death. He is so far from what we were told he would be.

If he were here, it was predicted that he would have massive brain damage.

If he were here, he may not walk again.

If he were here, his cancer would have regrown and spread.

If he were here 9 months from that date looked like a hellish prospect.

Today, he has no sign of cancer regrowth. Today he walks just fine, he plays, he talks, he looks and acts no different from any other 4-year-old boy. Today we celebrate all of the healing that has occurred. Praise Jesus! We celebrate the fact that all the doctors were wrong about every aspect of what we were to expect.

John John is so full of life that no one can tell he HAD brain cancer. Thank God for today.

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Love, Faith

back to the beginning #3

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these photos were 3 weeks after surgery when John was trying to learn to walk again. He had a severe weakness on the right side. His muscle tone on the left was not up to par either. It took massive work to get him standing again. His ability to walk was seriously compromised and he spent 6 or 7 weeks in a wheelchair. It was hard to keep him in bed or in the wheelchair. He thought he could do what he used to do. He figured he could hop out of bed and go. But, his body wasnt cooperating, which led to a tremendous amount of stress for him.

We worked slowly with Kripa and Olivia to get him mobile again in therapy. It was a LONG process. Johanna bought him a bike to help his quads develop. Lynne and her friend bought him a bob stroller to get him around without the wheelchair. The walker proved to be a vehicle with wheels that John figured he could run with. Wayne from profit nj brought his custom brace to help his right foot be straight.

I spent 5 hours a day in therapy with him in rehab, for three weeks. It was absolute torture.

He had lost so much weight at this point we were watching it on a daily basis. his presurgery weight was 17 kilo-. His low point was 13.9. That is however many kilo- times 2.2 to equate the lbs. I don’t think in lbs anymore. right now he is 17.5 kilos and 2 inches taller. He turned from a linebacker into a gangley knobby kneed skinny boy.

during all of this we contemplated a feeding tube to get him up to par. I just couldn’t stomach a feeding tube. he would be miserable and I felt like the challenge of finding new foods he could eat would be hard, but worth it.

It took him 6 months to go from 13.9 kilos to 17. He’s holding now at 17.8 kilos. Its less than optional. But he has learned to swallow certain textures despite his neck muscles being lower in tone than the normal persons. He is challenged daily by us to try new foods and it is a SLOW process. We are tough on him to consume foods that he doesn’t want to eat or may cause him difficulty in swallowing. It is a hard thing to exercise his esophagus. But, very important to his long-term health.

The brain damage caused his tastes to change tremendously and he would not eat his former favorite foods. NEW CHALLENGE. We had to find out what his new tastes were. The brain is a funny thing. it was a challenge of a mix of texture issues and taste issues. So I randomly ordered stuff from the cafeteria and bought more than i ordered. like $500 dollars more in three months, just trying to figure out what he would eat.

Thank God for people like my good friend Lisa that pressed money into my hand to pay for food. I never counted the amount, but went through all of it in this endeavor.

We finally decided to end rehab a few weeks early after 5 1/2 weeks in the hospital so we could decide on treatment for our childs cancer. We took him home still in a wheelchair and with a walker too. Understanding he had to be supervised every minute of every day. Every second….someone had to be right behind him incase he fell as he had a plate in his head that had just been placed from his brain surgery.

Talk about nerve-wracking. I had to stand behind this child every step even in his walker. every blessed step. I was a mess of anxiety. an absolute mess.

Enough for now, Faith

Back to the beginning #2

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The moment my son came out of the operating room, the surgeon walked out. He was there to deliver the news, whatever it may be.

I had taken the time ahead to write down a list of questions while I still had half a brain during surgery. But, this is what he said.

He lost three liters of blood, I didn’t think he was going to make it through surgery, but he did. He barely made it. Everyone was ecstatic! I knew better. What was it? What is the name of the tumor and is it cancer? My brain was screaming! Then the crushing words. malignant glioma of some sort. MALIGNANT. I gathered my blood back into my face and asked all of the questions I had written down.

The cancer was deadly and malignant meaning the chance of it having spread or spreading was good. if not now then in the near future. Regrowth was almost an inevitability. I know enough about cancer to understand that his chances were not good. Even without a final pathology, the initial one to come back was worst case scenario. Horrific news.

I was reeling. he had to make it past a 36 hour window to be out of the risk of stroke or brain bleeds. he would have a repeat mri in 24 hours.

This photo was taken of him about 5 hours after surgery when they figured out what pain medication would work for him. It was 4 hours of agony. crying at the side of his bed while they figured out what pain medication combination would work for him. We couldn’t soothe him because more stimulation agitated him and caused thrashing around.

It was the worst thing in the world to have to stand there and cry silent tears and not try to comfort him. It took everything i had as a mother to not touch that poor child while the nurses worked. It was agony. pure agony. pain i could not even pretend to soothe. pure terror in my heart. praying for mercy for my poor son the whole time.

going on in the back of my head was a huge question to God. If he has malignant brain cancer, why spare him from the surgery if were going to lose him later? I never thought to ask for a miracle. I didn’t think that was possible. I didn’t understand why God would allow this if He might think to cure it.

It taught me a lesson I will never forget. time is so precious. every tear I spent saying goodbye before the surgery, every moment I tried to memorize the way he felt in my arms, every kiss on his sweet head, every cuddle, and every moment was precious regardless of the situation. It was me feeling again. I felt his presence and life became sharper in that moment for me. more in focus if you will.

I was left with the devastating news that the doctor didn’t know how much brain damage had been caused. It was questionable whether or not he would move his right side again. For now he was completely paralyzed.

Enough for now, Love

Faith

Back to the beginning of this story #1

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Why go back? Because…all of these things lingering about my experience are haunting me. It was traumatic and I can not forget what I do not share. I want you there with me. I want more than anything for you to understand.

This photo was taken right after the diagnosis of “mass in the brain” was told to me. I was with my best friend that night at the emergency room.

The first thing we did was pray. The doctor said, there is a large mass in the brain. I said, oh shit, GOD NO! (lets just be real for a moment) if you saw what I saw on that scan…there was very little brain and a lot of tumor. it took up over half his brain cavity. Sorry God, and then we prayed. We prayed that God would have his hands on my son and whatever would come of this situation. I prayed with the doctors and prayed for their wisdom and healing ability.

After one day of mri’s and scrutiny, John was going to surgery. We had 12 hours to spend with him not knowing if he would make it through. There was a definite possibility of death. I sat with Luke, Jimmy, Mark, and Steve through two agonizing nights with little sleep. Much talk about God and where we were in the very moment when things were happening.

From the night John was admitted to CHOP until his surgery began was about 52 hours with no sleep. We all sat and talked. We confessed our worst fears and like Job’s friends, we sat together saying nothing for hours on end. I said goodbye a hundred times to my sweet child and held him. I tried to memorize every bit of his body so I would never forget. I couldn’t contain my tears if I tried. It was absolutely heartbreaking every time I began to think about my son’s head being cut open. If I began to think about the monster his skull contained. I was stifling tears and holding back sobs as the emotion escaped my eyes in small tears. one by one they fell. one by one they betrayed my fears and pain. we all felt that way that night. the 5 of us in that room. we all cried and were afraid.

Then the real pain began. I can only describe to you what it is like to wait for surgery to finish. 10 agonizing hours of wondering if your child is dead yet and no one has been out to tell you.

we alternated singing together with prayer every 15 minutes on a timer for 10 hours. we sang and lifted our tears and voices to The Lord. We were all scared and talked of everything except what we were all wondering and thinking. There were about 20 people in the room with occasional prayer worrier visitors and pastors. We remained for the long haul. We knew we were right next to the operating rooms and sang in unison praise and worship songs, hoping the surgeons would hear us.

When the nurses updated us the first time it was that 1% of the tumor was out. The next 4 updates were that things were “progressing”. That was a horrifying update. It was vague and scary. We asked questions but no one knew anything more. When the nurse finally came in and said they were finishing up.

We sprang up and moved to the door outside our private waiting room. We figured out pretty quickly that we could see the patients beyond being wheeled to a private elevator through a pair of double doors that were locked. So we took station and waited. Carefully watching from every angle for a gurney containing my sweet little 3-year-old boy. It was hard to wait….I sweated…I cried silent tears….i prayed that he was one being wheeled to a room and not dead. It was a struggle to stand there and wait. watching gurney pass 200 ft away behind glass.

Enough for now, love

Faith

 

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