John’s Life Prognosis

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In therapy, we have plateaued. At almost 11 months….he is recovering from major brain damage and I never knew what the recovery process would look like. Well, we appear to be here at the end for now. Plateau is a nice word for not gaining anymore progress. A daunting perspective when you see a child lacking so much in skills and ability. Don’t get me wrong, there are many children worse off than him. But, this is our child. Plateau is an ugly reality.

We are nearing on a year since the surgery on his brain. Recovery from all the damage from the tumor and surgery has been our goal for the last 10 plus months.

What I envisioned is much different from where we are today. I cry writing this because it is a new reality setting in. Our son is going to be handicapped the rest of his precious life. Praise God he has regained as much as he has. He will always have weakness on one side of his body. he will always have weak neck muscles. he will always have weak arms. he will probably always have problems weight-bearing on his right leg…he will probably always have emotional volatility and impulse control issues. It is a heavy weight on me as a mother to understand all of these things.

I imagined almost a year ago that the neuroplasticity of his brain was still very pliant. In my mind we had a year to do everything we could to help him heal before he turned 5. In my mind that made him close to whole and normal. After all, a year is a long time, right? Well, not long enough. He has hit a wall and is not progressing any further in his therapies. so, we have to look at taking a break.

A break to me means more than just a break. It is a breaking point. He is going to turn 5 soon. The brain changes and doesn’t make connections as easily after age 5. healing is much more difficult.

Lets get real for a moment. he had a tumor over HALF the size of his head. The damage is real and not small.

Physically he is weak on one side and overall weaker than his peers. His ability to process information is slow and his visual processing is stunted. He has emotional volatility and is without inhibition. The list goes on…I just don’t care to go through all the deficiencies.

I am sad, immeasurably sad. despairing and sad. I know God has a bigger plan for my son. I know this in my heart of hearts. But, I expected more in the time we had. I envisioned him differently.

I need a new perspective and I will think on it…

enough for now, Faith

The Garden and all its idealism

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I started my seedlings in mid march. Seeds into dirt. so simple. such a metaphor for life….sigh….I love to grow things. It makes me so happy. I like beautiful heirloom veggies that no one has ever seen, at least not most normal people. Purple tomatoes, speckled green beans, baseball bat size zucchini, piles and piles of veggies, that makes me happy. The garden is my happy place. I love it there.

I have thought a lot lately about what makes me happy. But, this post is not about me. You see, I built this idyllic garden, playhouse, sandbox, and yard for my babies.

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There is a part of my dream that I have had to let go of. It is the part where everything Is perfect because I can build it that way. I am a whiz with power tools and projects. I know my way around an overblown project on crack. But, the heart of what I built was for my children to have a perfect childhood. I am obviously an idealistic person. smh…meh…overrated. I say that now, but…when I built this magnificent back yard, our life was going to be perfect. with 2 beautiful children and the perfect life. I was going to be a baby factory…lots of children to teach how to garden and watch play while I sipped iced tea from my patio.

Isnt it funny how real life interrupts that whole shebang of idealism? Wood bees love my swing set. My husband would rather burn leaves than wood in my fire pit. My pepper plants are plagued by bugs, and I hate iced tea. Just saying. Then there’s the obvious. my son is handicapped. the back yard is a treacherous place for him and he requires supervision.

a huge part of me had to just let go. give it up and surrender to life. Life is good, I know how to kill wood bees after all. And I like to watch my children hang off of the 10 ft drop overhanging the stairs to the playhouse…..ok maybe it’s not 10 ft, but you get the point. I almost have a heart attack every time I watch them play. But, back to the letting go.

Somewhere in between projects and idealism real life hit with a vengeance. I still love all my idealism fresh out of my 20′s and hope my spirit never dwindles. But, I think a lot more about the now. Right now, we are…..Right now, I want to….Right now, the children are happy. And in its sloppy sort of freshness, so am I.

I think the 30′s grow you up quite a bit. I see a ripening of wisdom here and there. It is a season of embracing change and learning to enjoy it. I am there.

with love, Faith

 

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

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