We are creating this blog as a way to get information out about Kurt Hering (“Bumpa”)’s grandaughter, Alexa.
Alexa was staying with Bumpa and Bumma Hering on New Years Eve. We noticed at church she was limping and not using her right arm. She had been spending time with a family friend that had a limp, so since there was nothing else going on health wise, we thought maybe she was imitating. She stayed over night with us and we could tell it was something serious as we watched her during the evening and when she got up in the morning. Things have happened fast since then, check the blog for what happened in what order.
Bumpa's Little Sweetie 
Dawn Gunderson has been keeping me up-to-date with what has been going on with Alexa and I have been letting Michera know. I am so sorry to hear about Alexa and all the Storches are praying she heals quickly and makes for full recovery. Our thoughts are with you all and please let us know if there is anything we can do to help even though we are so far away. God Bless, Steve, Michelle, Dane, Jude, Katharina, Cole and Marlee.
Thanks Michelle. We miss you guys.
Tell Jude Pastor says he better be taking good care of you. :^)
Dear Herings:
I am Dawn Gunderson’s aunt; Emma, Nathan and Ava’s great-aunt. We are thinking of you all and praying for Alexa. Lots of prayer coming from Montana!
Michelle Hensley
Our hearts go out to all of you. And, of course, you and Alexa and the doctors are all in our prayers.
Word travels fast, I had the opportunity to meet both Alexa and Ciara through MOPS and got word from Michelle Storch on what’s going on. Alexa is a darling little girl full of spirit. My prayers are with you all. Sending lots of love and prayers from Texas. – Sincerely, James, Carrie, Hannah, Garrett, and Lauren Becker
Our prayers go out to you and your entire family for little Alexa. She is truly a blessing and such a sweet spirit. We enjoyed getting to know her in Utah and now are praying every day for her from Washington!
God Bless You!
Mike, Michera, Madeline, Matthew, Mollie, & Moriah Roos
I met Alexa and her mom through MOPS last year. I am also a friend of Michera Roos and Michelle Storch. I wanted to let you know that we will be consistently bringing your family’s name to the Lord! We are praying for comfort, God’s peace, and complete healing during this time. I pray that your family will be surrounded with support and loving friends and that you will be blessed abundantly by His healing!
In Christ, Matt, Becky, and Ansley Jones (Lakeside Church)
Alexa,
We have you in our thoughts and prayers here in California. You are such a beautiful little girl who has so many people watching over you. My prayers and thoughts go out to y ou and your family.
Alexa & Family…
where to begin… my thoughts are consistently on you all. I cannot even begin to assume I know what you are experiencing. It is very difficult to be here in California and know that you are all so far away. I appreciate the time it takes to keep us all updated during this trying time.
Alexa honey…you are a very special & bright little princess, who is full of life!!! Be the little “pistol” we know you are and fight, fight, fight!
We know GOD is watching over you and that brings us comfort. Our prayers are with you all always
Ciara this is for you. I found this and thought you need to read this. Here goes: 10 things being the mother of a cancer child gave me
1. I’ve learned not to care what people think of my appearance. Not that looking nice isn’t important, but I’ve also learned that on the bad days, it’s ok to wallow in it. When I’m walking down a heavily populated hospital hallway, in my sweatpants and bathrobe, my hair hasn’t been brushed in 2 days, there might be some puke on my shirt and I’m wearing hospital issued footies…I’m proud. Because I got out of bed AT ALL today.
2. I’ve learned that it’s ok to walk away from it all and take a breather. Even though you feel guilty because your child doesn’t have the choice to take a break, and you feel like the worst parent in the world….I have to take care of me too. It’s something I heard a lot when I had a newborn, take time for you. I didn’t realize how hard that was until I was sitting on the floor of my closet, with the light off, holding the door shut with my daughter on the other side begging me to let her in. Sometimes you just have to leave and breathe so you can pull yourself together.
3. A phone call where you say nothing profound is sometimes better than no call at all.
4. I’ve accepted that I can’t do it all myself. I can’t really do 50% of it myself. I’m not ashamed to ask for help, to accept help and to be truly grateful for it. I learned that people who find themselves outside of the situation often want to help, but have no idea what to do. I’ve learned to just accept the generosity and compassion of others that allows them to help carry the burden we bear. And be eternally thankful that people care enough to WANT to help us. I have learned humility and pride at the same time.
5. I am no longer embarrassed to cry in public, I can hug a newly introduced person, I bare the most intimate parts of my soul for contrast and comparison. It helps, it’s like free therapy.
6. I understand that it’s ok to be angry with God, to vent your frustrations and anger at the situation you’re in. It’s impossible not to be full of all these negative emotions when you see such pain and suffering and loss happening all around you. When you can’t even comprehend a loving God that would let a child, any child, MY child, get sick and die, how do you not get belligerently furious with God. I also understand that God lost a child, watched him die a painful awful death. He gets that anger.
7. Being able to find the laughter in life, regardless of whatever you’re going through is a blessing. No matter how bad it is, there are always moments of joy, moments meant to lighten and soothe. If I can’t laugh, I might as well give up. People are kind enough to say that they like the positive attitude of our site, that they admire my ability to be funny in the middle of it all. Let me tell you, in the middle of it all is where it’s most important to laugh.
8. It doesn’t matter how smart someone thinks they are, what they feel is the right way to parent a child, no matter how educated their opinion, it doesn’t mean that they know what’s best for your child. I’ve had to shrug off overly opinionate strangers who felt I should take Peyton’s binky away, I’ve handled the LOOKS when I tell that Peyton crawls in bed with me EVERY night, I let her eat black olives and oranges for breakfast if that’s what she wants. I’ve also seen the horrified stares when I got on her case in a store for being ugly and hateful. How dare you bark at a cancer kid!? You know what? It’s my cancer kid and I have to live with her long after the cancer’s gone, so get out of my face!
9. I’ve become an oncologist, a research assistant, a personal chef, a therapist, a patient, a better friend, a more accepting mom, a pharmacist, a writer, a full-time-work-from-home-but-still-unpaid-mom, a referee, a coach, a nurse, an event organizer, an advocate, a charity taker and giver, and a motivational speaker.
10. I have strength in my heart, spirit and faith that I never knew I possessed. I’m very proud of it. The day Peyton was diagnosed I knew that I would fail her, I would not be able to handle this and she deserved a mother who could get her through it. I feared every day was the day I would lose it and become the person I most feared: a mom who was less than her children needed in every way. Yet, no matter how bad the day, how raw the pain, how real the fear…I’ve found my way through prayer, belief, faith and love.
Ciara and Kevin and the rest of The Hering Clan,
Just wanted you to know that The Parshall Family in Simi Valley, Ca. is praying for your beautiful little Alexa. We are so encouraged by your posts and know that God has already done some amazing things for Alexa. Praise God to read that the prognosis is so encouraging. We will be lifting her in prayer these coming weeks as she goes through her radiation treatments. May you continue to find rest, peace, and comfort in Christ Jesus.
Ciara, I met you at Sharky’s when your Grandma was in the hospital. I like what your mommy posted above, she is absolutely right. I just want to encourage you to continue to be the best mommy you can be! God will fill you with the strength you need, continue to trust in Him.
Here are some verses I hope bring you comfort.
1Cor 10:13 Trial has not overtaken you more than men can endure, for God is faithful, Who will not permit you to be tried beyond what you are able. On the contrary, He will with the trial, also provide the escape by which you will be able to come out of it.
Philippians 4: 6-7 Do not be anxious about anything, but in everything by prayer & petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understandin, will guard your heart and mind in Christ Jesus.
Prayers and hugs,
The Parshall Family (Cornerstone Church Simi Valley, Ca)
This family should contact The Pediatric Brain Tumor Foundation for support and information. This organization has been in existence since about 1983 and is focused on childhood brain tumors.
The web site is http://www.pbtfus.org
Good morning!
My name is Judy Bloor and I live near Toronto in Canada. I came upon your story on the Standard Net Examiner website while I was doing some ependymoma research. You see, my beautiful 2 year old son, Charley, also has anaplastic ependymoma. He was diagnosed at just before his first birthday in the summer of 2008. His brain tumour was also supratentorial, (at the top of the head as opposed to in the brain stem), so Alexa and Charley are in the same very rare situation. Charley also had the same treatment as Alexa – surgery and IMRT radiation, which he handled very well. The only side-effects from the radiation was some hair loss (about 3 wks in to radiation, which grew back 3 mths later) and some somnolence (wanting to sleep more – from the end of radiation and lasting several months). Charley’s tumour was also very large (9 x 7 x 7cm) but his was a little further back (frontal/parietal – near the sensory/motor cortex) which left him with left sided hemiparesis which is now only a left-sided weakness.
With lots of physiotherapy and occupational therapy, Charley is now walking, climbing stairs and trying to run and skip and jump! All of his other abilities (cognitive, emotional, social, communication, problem-solving) are age-appropriate or better, and he is a very funny, bright, talkative, charismatic toddler who inspires hope and love in all who meet him. Charley has had MRI’s every 3-4 mths since treatment ended and all have been clean with no evidence of recurrence.
We are now almost 18 mths out from diagnosis and Charley is getting stronger and smarter every day! I thought you might like to hear a success story from another child in a very similar situation.
I wish the very best for Alexa – a quick and complete recovery, an easy time with radiation, and only clean scans in the future. For her family, I wish strength, comfort and peace during this difficult time, and for lots of friendship and support from family and friends. An idea for friends and family – Charley’s godmother had a benefit for us – she sold tickets to all our family and friends for an evening of good food , music, raffles and silent auctions. It was very helpful. Also friends and family have been great about helping with driving and accompanying us to appointments and giving us gift cards for food, gas or coffee during hospitalizations.
If you would like to read more about Charley’s journey or see photos, you can go to his site at http://www.caringbridge.org/visit/charleybloor. Also, if you would like to connect with other parents of children with ependymoma, you can go to: http://www.braintrust.org/ependyparents.htm.
With prayers for your beautiful Alexa,
Judy Bloor (fellow ependyparent)
I am Karen Kirgis sister. She sent me the prayer request and I have sent it on to all my friends. My heart goes out to all of you. I understand what a mother goes through when a child is very ill. Our prayers go out for Alexa to have a safe, speedy and successful recovery.
Prayers to everyone from,
Dick & Alice Bingman
Oklahoma
Kurt,
The responses on this blog which you have dedicated to Alexa are amazing and so heart-warming and full of love that Alexa and your whole family have to never not realize that God hears our prayers and will ever answer in ways we ask for or cannot even imagine.
“Lord we believe, help Thou our unbelief.”
d & M
“Alexa Blog” Readers:
This is not important but, please, it is intended to apologize for the typo error of the 1-10-2010 posting that we sent at 11:23 pm.
We should have punched our reference of “blob” as “blog”.
People over 70 never knew what a blog is until their 60’s.
(But the rest of the message rings true.)
d & M
Kurt,
Sorry to hear about your grandaugher. My 8 year old son had an ependymoma 4 years ago. (you can read our story at martysjotd.blogspot.com). braintrust.org has a WONDERFUL email group just for ependamoma parents and grandparents. Look me up if you join.
Marty
Sandy Utah
Judy Bloor of Canada, Charley’s mother, is certainly one very special, sharing, caring, loveful someone without peer. Without doubt, God blesses and will sustain her and Charley and their close family.
Judy’s heartful message reminds me that “Thrivent for Lutherans” used to promote benevolences to raise and render financial assistance for worthy causes and the needy.
If “Thrivent” still makes its charitable programs available through their representatives, hopefully, Alexa and her family will be brought to their attention by someone — anyone, please.
Praying Alexa is continuing to thrive…
Thinking and praying for Alexa daily! She is such a beautiful girl and we are hoping she is coming through treatment well!
Hi Ciara
Sorry I missed your phone call several weeks ago but I am very glad to hear that Alexa loves her quilt. I hope that I will get to see your mom this weekend and am sorry to hear that you and Alexa will not be able to come out, but do understand that it is best for Alexa. Larry and I think of you both every day and wish you luck and give you lots of love all of the time. Hope to see you both soon. Love Diane Brewer
I’d like to start my very own blog one day. This was a very nice blog that you simply made here. Continue the success 😛
Alexa– you and everyone who loves you are in my prayers. Jesus loves you very much. He is right there with you wherever you go. He understands your feelings and knows what you need every day and hour. I am glad that He is holding you and your family in His arms. He is blessing and keeping you.