Posterior Fossa Syndrome is, from what I’ve been told, somewhat of a medical mystery. It sometimes occurs after a surgery in the posterior fossa area of the brain, which includes the cerebellum, which is where Ian’s tumor was. It seems to occur most often when the tumor is a medulloblastoma, which is what Ian’s tumor was.
There are not a lot of answers, at least not any definitive ones. They cannot tell me how or why.
But I can tell you that it’s heartbreaking.
I can tell you that it’s gut wrenching.
I can tell you that it’s scary, that it strikes fear in the heart of a parent.
I know these things, because my son has Posterior Fossa Syndrome, and for the past several days it’s been the hardest part of this course we did not sign up for. A little over a week ago, Ian could walk and talk. He was a normal 17 yr old boy. He did normal things like lift weights, read books, eat large amounts of pizza, wash the dishes (by hand, our dishwasher broke well over a year ago…) without complaining, ok, that’s not really normal, at least the without complaining part, but that’s Ian.
A little over 24 hrs after surgery, that sounds too casual, after BRAIN SURGERY, there, that feels better, Ian’s speech became harder to understand. His eyelids became droopy. His eyes were not tracking together (causing him to have double-vision and get to wear a pirate eye-patch on alternating eyes to block out one of the double images). His gross and fine motor skills deteriorated. He lost his ability to swallow.
My strapping lad, my 6′ 2″, 140-some pounds, incredibly healthy teenage son was being fed through a tube down his nose because he lost the ability TO SWALLOW. In many ways, posterior fossa syndrome appears as though the patient has had a stroke, but with no signs of reason why. The CT looks clean. Medical mystery.
Devastating.
I’ve broken down so many times, just crying out to God, and I just keep hearing this…
Why art thou cast down, O my soul? and why art thou disquieted in me? hope thou in God: for I shall yet praise him for the help of his countenance.
Psalm 42:5 KJV
There IS hope, and I have it, by His grace, and I truly shall yet praise His name, though it may be with a tear-streaked face…
Cancer is a hard word to hear, a hard reality to deal with, and yet it still seems sort of unreal. You can’t see it. You can’t feel it. Treatment (radiation and chemo) hasn’t started yet, so it still seems like some obscure thing on the horizon, or like some sort of invisible enemy.
But Posterior Fossa Syndrome isn’t on the horizon, and it’s not invisible- it’s staring us in the face, and it’s the hardest thing right now.
I’ve been watching my son relearn to speak, relearn to eat, relearn to use the remote- it’s a skill. I’ve been watching him relearn to walk, with two assistants at a time. I’ve watched him as 2 occupational therapists work with him relearn to wash his face and brush his teeth. A week and a day ago, he could do all of those things, without the assistants and therapists.
Heart. Break. Ing.
It’s coming back, all of it, one baby step at a time. He’s getting a little stronger every day and all of the therapists are very encouraging about that, which I’m so thankful for. When you’re starting from as far back from strong as he was, a little stronger every day is great, but it still means that there is a very long way to go. They have him working with speech therapy every day, and physical therapy and occupational therapy twice each day already. Who would’ve ever thought that a game of Connect 4 would become a grueling workout? I never saw that one coming.
I’m so tired. The commuting is getting old, leaving him there is hard, figuring out the logistics of finding babysitters for the rest of our children is rather crazy, but seeing His hand on our lives each day will never get old, hard, or crazy…
Ok, I’m really yawning wide and long now, but I have to share this- one of Ian’s friends from the local Christian school soccer team started a facebook prayer “event” for Ian, and asked people to share with people who will ask people to share and on and on (kind of like the song that never ends, it just goes on and on my friends) and when I got a message about it, saying that there were 550 people praying for Ian, I was so touched. I teared up. I went to comment, and there were 644. After my comment there were 658. By the time we told Ian about it there were about 1,400, and 2,700 by the next morning. I’ve checked in several times a day and have been so choked up every time I see that number go up.
The last I checked, there were 17,983 people who had clicked “attending”, with 73, 224 people awaiting a reply (after being invited by someone).
AMAZING!
It’s overwhelming me, us.
Also- our van, it seems it was running, well, mostly-sort-of-sometimes-running on 6 of 8 cylinders. I’m no car guy, but I know that’s not the way those things are supposed to run. And I know that engine repairs don’t come cheap. That mechanic who called? He’s a christian guy who’s doing the work for pretty much the cost of the parts, something like a 45% discount, we were not expecting that! Praying that the Lord would bless him for his generosity and helpfulness (and that He would bless the family that called the mechanic!)
The local homeschool community has been so awesome in stepping up to feed us some pretty incredible meals and helping out with childcare.
Our families have been such a blessing.
The body of Christ has been beautiful.
Thank you!
Thursday’s major prayer request-
Please join us in praying that today’s full-spine MRI will be clear with NO signs that this cancer has spread!
**Update**- The MRI was bumped until late Friday afternoon. More waiting, but that just gives us more time to pray, right?!
{ 36 comments… read them below or add one }
I pray for you, and I cannot imagine how you have the strength to write these posts to share about your sweet Ian and your family. I am grateful for your sacrifice so that I can share in your story, and so I can continue to pray for you. Lord, if it’s your will, let this cup pass from them quickly.
I am so sorry. ((hugs)) Continuing to pray for you and your family.
As a mother of a 17 yo young man, your journey with Ian has grabbed hold of my heart. Thank you for you beautiful posts. We are praying for incredible healing and strength for you all. And trying to appreciate every moment for the gift of the ordinary.
Still praying, Ali. I cannot imagine watching my child deal with that. It breaks my heart to hear Ian’s struggles and hear your pain. In the face of all this, you are shining the grace of Christ out onto this world.
Continuing to pray.
praying for you, wish i lived closer and could help. For now I can pray and that is what is needed. i would like for my children to send him cards. is that okay
Praying, friend!!
praying for a clear mri. praying for healing for ian.
Lifting you all up in prayers. May you get a clean spinal MRI today! May God’s peace and comfort continue to be with you all.
Oh, still praying! It breaks my heart for you.
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.
“The Lord is my portion,” says my soul, “therefore I will hope in him.”
Lamentations 3:22-24
Praying for Ian. A very sweet friend of mine went through something similar her senior year (my junior year) of highschool and reading your post took me back. I will pray for healing, no spreading of the cancer, complete healing in Jesus name, and peace in knowing He has a plan.
your blog post left me with a tearstreaked face….as a mom – ordinary mom, just like you – i am in awe at your strength, grace and faith! you are awesome! ian is beyond blessed to have you as his mom and to stand beside him as he endures this “storm in life”. you should definitely be quoted “There IS hope, and I have it, by His grace, and I truly shall yet praise His name, though it may be with a tearstreaked face”-ordinary Mom
I pray for healing & God’s will to be done & for His glory to prevail, because remember ALL things are for His glory!
Oh, my heart…its aching for you and your family.
You’re in my prayers.
God, be with this family. Guide them through this pain and hard time. Carry them through and show them your great love every second of everyday. Amen.
Prayers and blessings for you, your family and Ian. Stand strong, sister, we’ll hold up your arms as you hold on in faith.
I’m so very sorry. I’m continuing to pray.
Praying here also. Hugs to you.
http://www.youtube.com/watch?v=wvzDHGLEUyw
http://www.naturalnews.tv/v.asp?v=F5B32D25BDC2E1977584DF9A1DF9CC0D
Praying for your family during this difficult time. Our Father has answers for you!
Thank you for sharing your heart and life with everyone. It is not easy. I know that, because I’ve been there. Nearly 3 years ago my 2 year old daughter was diagnosed with leukemia. 4 months ago, she finally completed her treatment. It was a grueling walk. But also, it was beautiful, there is nothing more beautiful than seeing Christ at work so vividly in our lives. There are many insults childhood cancer throws. But our God is greater. The verse that I clung to during the hardest times was… “My heart and my flesh may fail, but GOD is the strength of my heart and my portion forever”. He will see you through. He will give you your portion each day. He loves you. He loves each member of your family, fiercely.
My prayers are with you. Please continue to share.
My heart just breaks for your family, Ali! Seeing your beautiful boy and reading what is happening to him really makes me want to fall on my knees and PRAY HARD. Praying for strength, patience, understanding, endurance and peace for you all. Praying for wisdom for the doctors.
If you are anywhere near eastern TN, let me know what would help you most. <3
Alison, we are all praying for you and your family! Praying for strength and grace as you go through this time in your life. Praying for Ian and wisdom for the doctors. Just praying….take care.
Praying daily for Ian, you and your husband and the rest of the family.
Praying for Ian and your whole family.
It’s so good to hear how Ian is doing. I worry right along with all of you and your family. Ian is such a fine young man and you have such a lovely family, I can’t imagine how difficult this must be for you. It tears me up every time I read about his condition and his improvements. I pray everyday for his health and well being. It reminds me of the time I was hospitalized. I wish I could do more, but I know prayer is the important thing to do. May all of this be praise for Him in some way we do not yet understand. Remember the Lord does not give more than we can handle. I will continue to pray for Ian and the rest of your family. May the Lord bless and keep all of you.
We love you guys!!! God is amazing and good to His children. God is faithful and true, holy and just. His thoughts toward you guys outnumber the sands of the sea and your faces are inscribed in the palm of His hand, even the hairs on your heads are numbered! He called the stars into being and has placed them all by the power of His Word and holds them by His mighty hand. He knew us before we were formed in our mother’s womb and if the God of the universe is for us, who or what can stand against us?
“The name of the Lord is a strong tower: the righteous runneth into it and is safe”! (Prov 18:10)
~traci
xoxo
This just breaks my heart! I have a son who is 16 so this strikes very close to home. Praying Ian will be healed totally. Praying you have the energy to make it through all this.
Praying and praying,
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Praying for your family that God will supply your every need and that your light will shine brightly during your son’s illness so others will be drawn to Christ. Blessings!
Since I’m not a parent, I can’t imagine what you are going through seeing your son go through something so difficult-You are a strong woman. I do understand what it feels like to watch something so devastating happen to a loved one. This time last year my father had a grand mal seizure, only to find out he had a rare brain tumor. We were told it was unoperable and he would have five years to live. One month later, by the grace of God, he had a awake brain craniotomy to remove the tumor by an amazing brain surgeon. He also had similar characteristics after surgery (the loss of speech, slow to respond to visuals). It’s a hard recovery, but God is with him every step of the way. I’m sharing my story with you because God is amazing…the power of prayer is undeniable. Because of prayer and our undying faith in God-the ultimate healer-our dad is still with us. His tumor is still there, as they couldn’t remove it all. God is amazing. I will pray for Ian to be continue to get better each and every day and for the tumor to leave his body. I pray for your and the rest of your family as dealing with something like is is exhausting. I look forward to following your blog and being updated on Ian’s condition.
I just want you to know I am praying for you, Ian and your entire family.
Praying empathetically for you! I travelled the cancer journey for 7 years with our pastor, who happened to be my husband. His victory came in November 2009 when he was promoted to Glory. I am now a widowed, homeschooling mother of 9. God’s grace is sufficient! I, too, lean on His everlasting arms every day.
My dear friend’s husband suffered brain damage from a cardiac arrest following surgery in November 2010. She has learned so much about the grace of God through suffering. She literally fought with the medical community to keep her husband alive. The doctors kept trying to convince her to remove his life support. She refused knowing he was not dead, and it was not her place to make that choice. He has made wonderful progress; we are praying for a complete recovery. It is difficult, two steps forward, one step back. But, God is faithful. The days are long and exhausting. We have and continue to learn so much about Him and His provision through our trials. We will lift you before the Throne of Grace. I know you do not know me, but please feel free to contact me if we can do anything for you!
I know it must be so exhausting mentlly and physically. I am a mother too and cannot even imagine the horror of this whole experience. I’m praying for your family you and Ian. I believe that Ian is healed and is recieving as we speak. God is so Awesome and can do all things!!! So I believe where there are two or more gathered in his name it will be done in his name!! God Bless!!!!
Oh Ali, I am so very sorry- praying my guts out – my heart is heavy for you! I don’t know you, but I have 3 boys- oldest is 10 – he once had a seizure and that is as close to my comprehending what you are going through as I can get – in just that one (not even) hour- I could hardly breathe, God bless you and your family! I truly will be praying-
Praying for your boy, you, your family, and the hands of doctors and nurses attending your son. Praying for encouragement for you, and for the many people who read this and realize God is working in your lives and can work in theirs too.
Continuing to pray for you and your family during this {I can’t even imagine how} difficult time.
I am so sorry to hear of your son’s brain cancer. My mother has been dealing with brain cancer for the last 2 years. The days after her surgery were very difficult as she completely lost the ability to speak. She slept A LOT. Gradually it all came back. I’m praying for your son and your family. Brain cancer is a very difficult walk as a daughter, I can’t imagine it as a mother.
Hi
Just want you to know it will be ok. My 8 year old daughter had the same surgery and same outcome last Thanksgiving. Ian will walk again, he will eat again and talk your ear off again. Listen to your doctors and your therapists, they are the experts and continue to believe in your faith, it will keep you going. Look up a website: We Can Brain Tumors. There are more of us than you can imagine out there who have and are living through this difficult journey!
A co-worker of mine’s son had surgery on Friday (Good Friday) to remove a tumor and has been diagnosed with medullablastoma. He is at this moment going through a MRI to rule out swelling or stroke as he appears to have posterior fossa syndrome. He initially passed his swallow study and had a gag reflex. I want to support her in anyway I can. We are nurses, both of us, and we are unused to being on this side of the glass. We are always empathetic with our patients and do our utmost to be good patient advocates, support the patient and family. This is uncharted area for me. I just want to do all I can to help, say the right things.