Friends...

I never journaled much till the dx. Dx, is medical shorthand for diagnosis. I thought I was doing everyone a favor by keeping them up to date on Steven's progress. Maybe a way to get sympathy.... I don't know...the counselor that our family used the summer after Steven's treatment to help us be happier again (yes, we visited a family counselor together) suggested it was my way of coping, a therapeutic release. Thus the reason that I didn't keep up with it in the months and years following was because I, didn't need it anymore. Caringbridge became a reminder... of where he had been for those 7 mos. that seemed like a lifetime. Events in our families history were marked as before Steven "got sick" or after "Steven got sick"... Yes, It changed our lives. As hard as we tried to move on with life it was always there. Somehow we managed to cherish much of the experience... in strange sort of way. Lance Armstrong likened it to winning the toure de france... only more significant in the person that it had made him. I don't know about that. I suppose.. after all he is a survivor.

I started this blog a while back(since Steven was now updating the www.caringbridge.org/ne/steven site, it is his site) with the idea that I could be an encourager...for my kids and someday for my grandkids. The last couple of days....I have struggled....How can I encourage when I can barely fight off the bitterness...that no kid should ever have to do this once, let alone twice. Now Steven is an adult with a wife...So.. he has to answer all the hard questions.... Questions like.... Do you have a will? What about a DNR (do not rececitate)? Who will make these decisions, if you are unable to? He and Britney should not have to do that...but... this is where they are. And they do the hard stuff... without question...So I continue to ask the question. Why? knowing there is no answer in this lifetime. And friends do the best they can to support and encourage. Don't feel bad if you don't know what to say... for,most of the time... there are no right words.

Tonight though, Mary Alice, Had the right words, at just the right time. One of those "little things" I wrote of before, from the Lord, assurance that our prayers are being heard.. Thank you, MA.. for taking the time.. and recalling those painful, life changing, memories. These were her words in Steven's guestbook:

so, another week begins. have been doing lots of thinking back to when Liz relapsed so long ago. did not want to see, talk, hear from anyone, and had to make a really deliberate choice to be open, and not go into a shell and could barely stand to do it all over again. But, we would have not met you...so, God has plans and they are good, for the Earth now, or His new Earth..either way, He loves us, and will not leave you. So, just keep walking forward in faith-it is not easy knowing ahead of time the routine/feeling of yuck, but, your strength is there, now and in the months to come when it gets tough. My prayers today were for your mom, that I could help bear some of this relapse pain, and today for Britney, who has not been there with you through this. Steven, you I know are strength for us all, so I pray God replenishes you each day. We are here for you, and next summer is reserved..This time, we will keep the habit up and not let it slide.
Much love
Mary Alice

The right words, from a friend, who "get's it". Because.... they have been down this path... and survived.. and yet are able to recall what it was like, and as a result assure us we will get to the other side as well. They assure us that our faith is enough, along with God's grace. And I can trust that.. Because they have been here. So thanks to all our friends.. we can never repay the untold kindness and love you have shown and a special thanks for those we met because of the DX, and share a special bond. You know who you are.... friends are friends forever..... When the Lord is Lord of them.

Blessings
LV

Little Things

After receiving news of Steven's relapse, wrestling with the grief, having the hard talks and making the decisions I held my wife close and told her "I needed some " little things" to assure me again how much God cared". Many of you will recall the "chunky chicken noodle soup" experience, the "Duck Hunt", with Jeff Martin, meeting Micheal W. Smith (Smitty to Steven), Having another teenager arrive at Ronald McDonald House, a bus load of friends arriving in Memphis to celebrate Steven's 17th birthday, when Steven was in treatment 6 years ago. Those little things assured me that God heard our prayers and was faithful in meeting Steven's needs.

Amazingly, already, through people willing to reach out, I have been given some little things again. To hang on to... Buck Gardner's visit, Phone calls from friends, messages on Steven's guestbook, blessed assurance, so to speak. Thanks to all of you for being answers to our prayers, as described by a child..... "like Jesus..... with skin on"

Blessings,

Lyle

The lyrics

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed his own blood for my soul.

CHORUS
It is well
With my soul
It is well
it is well
With my soul

My sin--oh, the bliss of this glorious thought:
My sin not in part, but the whole
Is nailed to the cross and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And, Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll,
The trump shall re-sound and the Lord shall descend,
"Even, so," it is well with my soul.

It is well......?

four months after the "6 years ago" post.. Steven has relapsed... In Memphis with his young wife and mother preparing for treatment... praying for miracles... again...

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33 33

Help me Father......to find that peace....... my prayer is for Steven... and Britney...... all of us....

6 years ago

When Steven was diagnosed with a Brain tumor we searched the internet for resources answers and support. One of the places we found it was a forum, newsgroup, List-serve at yahoo groups. One the Pediatric Brain tumor list. The other a medulloblastoma list. We were quite active on the list while under treatment. Wonderful people like Loice and David helped navigate the new path we found ourselves on and later I hope we were able to help others as well. I have not stayed active but do continue to "lurk". We have been blessed to have our son survive and to have been surrounded by so much support. Following is the post I made today on the Brain tumor list.

Friends,
(Long post)
Haven't posted for a long time. Still get the daily updates in my e-
mail. Have contacted a few of you personally if I think I can
encourage. But today as I reflect i wanted to offer hope.

6 years ago today Steven(16) was diagnosed with Medulloblastoma
Brain Cancer on 5/29/02 after weeks of persistent hiccoughs. His
initial surgery was done at Children's Hospital in Omaha. It was
then decided that we would go to St. Jude Children's Research
Hospital in Memphis, Tennessee to participate in a Phase II Clinical
trial for the Radiation and Chemotherapy treatments. On June 28th,
after a bout with meningitis, Steven underwent a second surgery to
remove residual tumor tissue. Steven has completed 31 cranial-spinal
radiation treatments and 4 courses of high dose chemotherapy with
stem cell rescue. Steven was released on January 30th, 2003.

6 years later? 2004- Steven graduated from High School as the
Salutitorian, 2007 - Was married A year ago in January to a lovely
sweet girl he met at a summer job. 2008 - this past May graduated
from College with honors. He will be interning as a youth minister
this Summer at a Church in Omaha, Ne. He and Britney just returned
from a solo canoe trip vacation in the boundary waters of
Minnesota. Many prayers have been answered.

His balance, co-ordination will never be 100% but it did get better
improving for a couple of years following treatment. His vision is
good in a narrow scope and gets worse peripherally. He makes the
trip to St.Jude for annual checkups on his own now. And we wait at
home to hear the results without much anxiety. It has taken time
and conscience decisions to move forward. It has impacted the
entire family. Change has taken place. Much of it for the better.
Britney and Steven don't know if they will be able to have kids. If
not, will adopt.

Pitty parties are few. We have a greater appreciation for those who
have faced physical challenges or handicapped children everyday of
their lives. We reach out to those parents struggling with sick
kids and fears that come with that. And sadly to those who have lost
the battle. Steven made several close friends while at St.Jude, MA
and lizzie, Matt, Tammy, Robert, Jeff, Austin and many others. So
yes there has been grief with the loss of close friends, but that,
because there was love first. We cling to that.

Steven, now 22 is writing a book he started in college as a class
assignment. It is therapeautic even after all this time to bring
closure and discover his identity beyond that of being a
cancer/victim/survivor. Revealing to me things I never knew he was
thinking and feeling.

That is enough for now. Thank you for listening. Hang onto hope,
fight the good fight, great others with a smile along the way.
Treatment is hard but it does come to an end and life, for many goes
on. For those who have lost this battle you have my deepest
condolences and sympathies. You are my heroes.

Blessings,

Lyle (Steven's Dad)
www.caringbridge.org/ne/steven
www.grandparambleson.blogspot.com


On with Life, Let the Sun Shine.

Grandpa