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May is NF Awareness Month
I thought I should let you know before the month is over.
Neurofibromatosis (Type 1 and Type 2) is a congenital disease causing “benign” tumorous growths (neurofibromas of various types) on nerve fibers anywhere throughout the body. I put “benign” in sneer quotes, because NF, as it is called in the community, depending on where the growths occur, can cause blindness and/or deafness, can be devastatingly disfiguring, painful, and even life-threatening. It is the disease of the Elephant Man. You’ve probably seen people with NF without knowing what to call it. Now you do.
NF has the same incidence rate as autism. Fifty percent of the cases are inherited and fifty percent are spontaneous mutation. My daughter’s case is the latter. As an older mother (I turned 41 the year she was born), I was worried about Down’s. There’s a lesson in wasted worry.
I’m not going to post pictures. Just know that, when you take your infant to the pediatrician and he asks if your child has more than six cafe-au-lait spots, this is what he’s checking for. It’s the first sign, followed by freckling in places where there shouldn’t be freckles. Outcomes are highly variable. If bone deformities and other complications don’t occur in early childhood, the hormonal adolescent years tend to be when things start happening. My daughter had brain surgery to “remove” a glioma from her brain stem at age eleven in 2013. She’s sixteen now and dealing with other symptoms.
It’s a struggle not to become bitter at the unfairness of it all. I’m having a bad week. We just decided we’re going to have to withdraw my daughter from her Hillsdale curriculum charter high school. She has the smarts, but she just doesn’t have the stamina, and with NF — shite happens. But, the challenge to my faith comes when I meet the lovely girl at Children’s Hospital who is wheelchair bound after spinal surgery to remove NF growths. Or, when I see the horribly disfigured bag boy at my local grocery store, or the 20-something daughter shuffling her way through the Home Depot parking lot with her parents — covered with abnormal growths on her face and neck. I don’t know what God is thinking. And, I have to remind myself, I don’t know what God is thinking. And I have to hope and pray that it’s true that these people — these of all people — will someday be graced with perfected bodies. Some day. Imagine their delight!
If you have NF, or you know someone who does, please be sure to register with the Children’s Tumor Foundation. The CTF is collecting data for researchers to use in the effort to end NF. Gene therapy seems more possible every year. It would be a miracle.
Published in General
Morning Western,
So sorry for your pain. The toughest challenge happens when your children are suffering. I know God will never leave us or forsake us, and that life has purpose, but this is hard. We are with you and your daughter and the other children.
Thank you, Jim. God bless you.
I am sending prayers your way. It sounds like a terrible ordeal.
When your daughter is in a better-for-her school situation, you’ll feel better too. :-)
I’m so sorry for your family’s troubles. It is terribly unfair. Why us? What did we do to deserve this? Nothing. Nothing at all. If only that helped.
Children’s hospitals are the most heartbreaking places in the world. I don’t know how the people who work there can cope. They must go home and cry every night.
Dear Chauvie, first – prayers ongoing! Second, HUGS for KtG! (I remember dashed dreams and expectations, too.) Third, recall the Lourdes time…See where Our Lord and Lady might be leading: [Jer. 29:11-14a] S/F and <3.
The education K has received already as a sophomore would probably get her past the GED easily. We’re relieved that she won’t be under so much pressure as she was in such a rigorous school. But, we’re mourning the loss. We need some time. It is a great (public!) school providing an amazing education and filled with wonderful teachers and administrators. We (probably foolishly) signed Kate up to travel to the Mediterranean with them next spring break. That’s all over.
The academic pressure is off, but one thing about NF… you’re always anticipating the next shoe drop. It’s pretty relentless and the stress takes its toll on the whole family. I do believe the only thing keeping us upright and moving forward is God’s grace.
St. Bernadette, Pauline de Chardin, and Flannery O’Connor are springing to mind, for some reason…Companions on the journey, perhaps? Phenomenal ladies, all!
Children’s convinced me God wants us heartbroken — and inspired. The people are amazing. A lot of them cope by taking different positions within the hospital. We met a fantastic former PICU nurse when we were checking K in for her brain surgery. She was so kind and comforting and funny. Thank God for these people.
I thought of you when I was writing this, Dear Nanda. I know you know the feelings. I’m not sure anything hurts us humans more than the sense of lost potential and lost opportunity. That yearning for perfection (be perfect as your heavenly Father is perfect — become who God made you to be) is evidence of God’s existence. We were made for heaven — for greatness. And whatever greatness we achieve in this life may be unrecognizable by worldly standards. I lean heavily on that.
Having met them all, I can say without a shadow of a doubt, they are all extraordinary people. I marvel at their strength in the face of what must seem like insurmountable odds. And yet they all stay cheerful.
I worked in the pharmacy at Children’s Hospital in Seattle for five years, and I can testify to the uplifting attitude of all the nurses and other staff there. Not everything is gloom and doom, and everyone takes care to wear bright colored clothing. Medical advances in treating all manner of childhood diseases are phenomenal, and there is always hope. Always.
Prayers WC. You are an Iron Lady/Family. One day we will know why us. I know this. Glory and Crowns await, with no more tears. God Bless.
Thanks, RushBabe. It’s been our delight and honor to know you and Ray, too. We count you among our blessings.
I should mention there is an FDA approved protein-targeted drug that treats some of the more devastating types of neurofibromas (plexiform), known as a MEK inhibitor. It has been shown to shrink — actually shrink! — tumor growths. However, the side effects are many and NF patients tend to be extremely sensitive. Like other tumors, these can also “learn” how to overcome the drug. So, we’re saving the use of this drug for when K really needs it — if she ever does.
There are many other MEK inhibitors undergoing clinical trials now, so hopefully NF sufferers will not have to deal with the most disfiguring, destructive effects of the disease in the future. Let us pray.
Thanks, Kevin. I’m really looking forward to that “no more tears” part!
I can’t imagine the struggle this condition must bring to all of you, WC. I can only send you love and prayers for strength and peace.
Thank you, Susan. Prayers are most welcome and help carry us through.
Well, WC, you just knocked me on my keester and knocked all the “poor me” right out of me. I’ve been aware that you’ve had challenges but not the extent. I think God gave her to the right parents. I don’t have much pull with the Man upstairs but I will lend my voice.
We have that effect on people. ;-)
We live with this kind of weird paradox where we have heightened compassion for people who suffer (and there are plenty of NF patients who suffer worse than K), and a suck-it-up-buttercup attitude for more pedestrian complaints. If I ever come off as tough on people, you probably understand why now…
Every prayer is heard. Thanks for yours, JM.
I was not at all aware of NF until now, and I wish you hadn’t become aware of it this way. Here’s asking for a lot of God’s grace for your daughter and her family as you deal with it.
People don’t know. I mean, most everyone has heard of the Elephant Man, but I think the disfiguring effects and resultant shame have kept NF from being publicized in the past. The CTF is modeling its efforts after the autism campaigns — raise awareness, collect data, raise funds for research. I’m trying to do my little part for the awareness raising here. K is already in the registry. If anyone would like to donate, that’s fantastic, but my priority is getting more data to the registry to advance the research. I encourage everyone with NF to register and everyone who knows someone with NF to encourage them to register, too. It’s important.
Thanks for your prayers, too, Reticulator.
Crying. Thinking of things like this, I develop a lot of fellow-feeling for Job’s wife.
Still, for your sake I, too will “trouble deaf Heav’n with my bootless cries” pleading for comfort for your daughter.
I’ve never known how to offer words of comfort to those who suffer. Along with the other members here I will offer prayers for you and K and your family at mass today.
Your comment that you have to remind yourself that you don’t know what God is thinking is very similar to what Fr. George Rutler writes today on the Feast of the Most Holy Trinity: only God can explain himself. I pray that wanting to know the answers to these questions keeps you and K strong in your faith and perhaps in some way offers comfort and hope.
Holy Mary, Mother of God, pray for us.
St. Joseph, pray for us.
St. Joan of Arc, pray for us.
If Heaven won’t hear the beauty of your poetic prayers, H, there’s not much for the rest of us! Thank you.
You can’t know how I cling to every word of care and encouragement. Thank you, Scott.
Dearest Chauvie, ah, Love, you are on my heart and God’s hear far more than you can imagine. You and yours are precious in so many ways.
I am praying for healing, peace, and courage. The grace you seem to have down to fair science.
May the love of our hearts and the love of the Father surround you so completely you will feel the burdens you carry lift from your shoulders to ours.
WC, prayers; and your family’s story is added to the myriad reasons that all my prayers start with a tremulous, sotto voce “Thank you…”
Daughter #1 (call sign: PROM QUEEN) kind of biffed on her first year in college. The Mongo gravy train stopped, and she had to work to pay off her own debts (Boss’ compassionate guidance and direction: well, Sweet Pea, you better learn how to work a fry-o-later or swing artfully on a brass pole, because I’ll not through good money after bad). PQ became a licensed medical technician and works as a medtech in the cardiac intensive care unit at her university hospital. Until I read your post, I thought the greatest good she was getting was that the nurses there are her personal super heroes. She is determined that she will be one of those heroes. For the first time, she sees the linkage between academic success and being able to do what she dreams of doing. Things are going great for her. The university recognized talent and is paying for her to go to nursing school. She recently was awarded a Nightingale award for her duty performance.
Now I see that the greatest good is that she is caring for and interacting with patients and families that are living on the razor’s edge of life and death, and that it is often incumbent on her to be the conduit of empathy and information to help patient and family navigate the traumatic, gut-wrenching experience of waiting to hear the word whether Dad will live or die, or whether the six-year old heart/lung transplant will see another sunrise. Her experiences have helped make her an incredible human being; her dedication to excellence in all dimensions of care humble me. I hope it informs her faith, but suspect she is still working through the “mad at God for letting this happen” conundrum.
I can only imagine that your daughter’s unfair and tragic NF affliction has helped many, many medical professionals become the better people and more compassionate caregivers.
Damn.
Reading Yer stories over the years concerning K, I’ve become Her biggest cheerleader out Here, pulling for Her every step of the way. That news is a punch to the Soul. But if I’ve learned anything, it’s that if anyone was built to kick ass and take names, with a sense of humor to boot, it’s K.
Add Me to the long list of people demanding The Lord’s ear.
You guys make me laugh! And cry. Thank you AUMom, Boss, and Jimmuh. Love and prayers of blessing for all our intercessors.
It’s true. She’s kind of a star when she gets into a clinical setting. Boss is right. People are made better by caring for the suffering. But, they do kind of fight over her in particular. We had a terrific chemo nurse who wouldn’t let anyone else give K her infusions. Too funny. She’d say, “K needs consistency” and then smile. Heh.
That might’ve made me cry, a little. Hypothetically.
Thanks for posting about this. The woman who runs the office here in Koinonia, Stefanie, has NF, a rather pronounced case in fact. She’s a wonderful woman and rarely even remarks about the afflictions it forces her to deal with, meaning in the three years I’ve known her, she has mentioned them precisely once. She’s a wonderful woman who loves Jesus and people. Like your K, she is an inspiring lady.