Monday, July 21, 2008

Words

Having a child with cancer opens certain kinds of doors. You, as a parent, are officially a part of any and all cancer organizations that are out there - which can be a good thing, because some help with certain funding, awareness activities, wonderful programs for children and families - but it also means you get a lot of reading materials in the mail! We recently received a large packet in the mail from one of the largest leukemia foundations/societies in the United States. This bundle of information included a nifty little binder in which we can keep all of Ethan's paper work in one place, a nice welcome letter, some funding information, and.... a three page excerpt on JMML. Now, if you've been following this blog for a while, you know that I've expressed many times how RARE Ethan's leukemia is. When I say rare... I mean extremely rare. And when the hospital started giving us information about childhood cancer and information specific to JMML, after a while, I stopped reading it. In fact, I threw all of it away. To read all of the horrible statistics and the lack-luster prognosis, and then realize that THIS is the cancer your baby has... well, it was not pleasant. So I stopped reading things all together. Now that's not to say I am not completely informed about Ethan's specific treatments, etc.... because trust me, momma knows what's going on in my baby boy! But I just no longer felt the need to read research that was put together to inform me of such details that didn't have one ounce of hope about his disease... plus, the most recent information they could provide me was 3 to 4 years old, at best... some information was even 5 to 6 years old.

Well, the packet of information we received recently, though most if it was appreciated and helpful, they also included a JMML "explanation" that if I wasn't a believer in Lord, would probably have left me crippled - physically and emotionally.

Allow me to share with you the words that describe our little boy's disease and the outlook of his diagnosis and his life! as it has so often been presented to us in paper form.

Juvenile MyeloMonocytic Leukemia
"JMML represents about 1.5 percent of childhood leukemias. It occurs most often in infants and children under four years of age. JMML accounts for 1-2% of childhood leukemias each year; in the United States, an estimated 25-50 new cases are diagnosed each year, which also equates to about 3 cases per million children. There is no known environmental cause for JMML. Since about 10% of patients are diagnosed before 3 months of age, it is thought that JMML is a congenital condition in these infants. Such cancer originates in a marrow cell that normally functions to form blood cells. About 1 of 10 patients with juvenile myelomonocytic leukemia also have type 1 neurofibromatosis. Neurofibromatosis is a complex problem that includes brown spots on the skin and tumors of both large and small nerves that can arise almost anywhere." [side note: Ethan was tested back in April to see if his JMML also included neurofribromatosis and the tests came back negative.]

Clinical Findings
"Infants with JMML fail to thrive. Children are lethargic and have fever, persistent infections, and exaggerated bleeding in the skin, mouth, or nose. Enlargement of the liver may occur and enlargement of the spleen occurs in virtually every case. Enlarged lymph nodes are frequent."

Course, Prognosis and Treatment
"Unfortunately, JMML has been resistant to chemotherapy. Improvement in survival does occur after stem cell (bone marrow or cord blood) transplant, but a cure is uncommon. A minority of patients will have a prolonged course for one to three years but, thereafter, rapidly progress to life threatening complications including infection or hemorrhage. The median survival of patients with the juvenile form of the disease is usually less than two years. Younger children (less than two years) are more likely to have a prolonged course. Some children convert to a full-blown acute myelogenous leukemia that is resistant to current therapies. Occasionally, patients have a very long survival (over 10 years) despite persistence of abnormal blood counts and splenomegaly, independent of the type or intensity of therapy. Since current treatments are generally not curative, parents are encouraged to discuss the option of clinical trial programs with the child’s health care team. The only treatment that has resulted in cures for JMML is a bone marrow transplant, with about a 50% survival rate. The risk of relapsing after transplant is high, and has been recorded as high as 50%. Generally, JMML clinical researchers recommend that a patient have a bone marrow transplant scheduled as soon as possible after diagnosis. A younger age at bone marrow transplant appears to predict a better outcome.
"

Fun reading for a parent, huh? I'm sure you can understand why I didn't want any of this information lying around the house/hospital, and thus threw everything like this away. When I was presented with this information yet again the other day, I became angry with the words. I started tearing up the paper work and with each rip I told myself that these are just WORDS. I reminded myself that this disease is so rare that they don't have up to the date information. And I refused to hand Ethan's life over to these statistics. I don't think I've ever enjoyed making trash so much in my life. I hated those papers. I hated each and every word. I hated the foundation for sending it to me. I remember telling my dad how much I hated that they could send such awful information to a parent whose child has this disease and not be more mindful of how horrible it would come across. There is absolutely no comfort in reading that information. Now, I know some say, "knowledge is power". But the knowledge of the details of Ethan's leukemia does nothing to insight any type of hope or power in his ability to overcome. Read it again... you see what I mean? Nothing positive. Nothing comforting. Nothing hopeful. So, I'd like to change the phrase to instead read, "God is power". I don't care to know (or be reminded of) all the problems with Ethan's disease. I don't feel energized by that information. And I don't feel any more equipped for this battle for his life.

But... I do care to know the Lord's power. I do feel energized by HIS WORDS, and with Him, I do feel equipped for the battle. The words of cancer research tells us that Ethan will fail to thrive. But, the Words of promise that God has given to me, tell me that not only will Ethan survive but he will thrive. And to thrive means to grow or develop vigorously; to flourish. I LOVE WHAT THAT WORD MEANS!

Now allow me to share with you the words that God has to say about Ethan's life.

John 11:3-4... Therefore his sisters sent unto Him saying, Lord, behold, he whom Thou lovest is sick. When Jesus heard that, He said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.

1 Corinthians 2:5... That your faith should not stand in the wisdom of men, but in the power of God.

James 5:15a... And the prayer of faith shall save the sick, and the Lord shall raise him up.

Psalms 126:5... They that sow in tears shall reap in joy.

Joshua 1:9... Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.

Matthew 21:21... Jesus answered and said unto them, Verily I say unto you, If ye have faith, and doubt not, ye shall not only do this which is done to the fig tree, but also if ye shall say unto this mountain, Be thou removed, and be thou cast into the sea; it shall be done.

Malachi 4:2... But unto you who fear [revere] My name, the Son of Righteousness shall arise with healing in His wings...

Isaiah 41:13... For I, the LORD your God, will hold your right hand, Saying to you, ‘Fear not, I will help you.’

Isaiah 40:29... He gives power to the weak, And to those who have no might He increases strength.

Mark 11:24... Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.

Psalm 91:9-16... Because you have made the LORD, who is my refuge, Even the Most High, your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, To keep you in all your ways. In their hands they shall bear you up, Lest you dash your foot against a stone. “Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, And show him My salvation.

Romans 8:28... And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

Psalm 73:28... But it is good for me to draw near to God; I have put my trust in the Lord God; that I may declare all Your works.

And of course, there are many more....

So which group of words would you rather have repeated to you?

No question. Give me words of hope. Not despair.

13 comments:

Katie Haentsch said...

Kasey,
AMEN!! I have been following your blog ever since Carleigh posted a message about Ethan's blog. God's words are LIFE. I have never posted but today I just can't help it because your message today just made me shout AMEN. Praise God for HIS life and HIS words. I don't have cancer touching my family at this time but I have been SO encouraged by your blog in my own walk with our Lord. I am believing right along with you dear sister that God's mighty hand will touch Ethan's body and bring him to full and complete health, that every ounce of cancer would be driven out.
Gone.
I praise God for you and for your courage and transparency.

In HIS joy,
Katie Haentsch
Fort Worth, TX
texas@haentsch.com

The Brandts said...

If anything, I think those words sent to you in the mail show all of us how powerful our God is! The pictures on the right of your blog show a little boy who obviously is thriving in spite of his condition. He's so full of life! I was actually encouraged by those words because I feel like they are in such stark contrast to Ethan's life, it's testimony to answered prayer! God not only can do the impossible, He does.

Jennifer Wiser said...

Kasey
I agree with you, and I did the exact same thing. I decided I didn't need to know the statistics, the prognosis, or the grim and ugly details. I just needed to know that God wasn't subject to anything those papers said, and that He alone could carry me through the journey and so why did I need to clutter my mind with words of negativity and despair, when I could bathe myself in the words of Christ, "It shall be health to thy navel, and MARROW to thy bones." Prov. 3:8
He is health, love, peace, joy, and strength. Cling to those words and throw the rest to the curb!

Praying for you always,
Jennifer

Hollie said...

Girl, you nailed it! Those papers are trash and HIS word is precious! I am standing by you with HIS precious words as we watch God's handiwork prove all of that other stuff wrong! :)

Fred said...

Kasey,
Though I don't know you, I receive updates on JMML on the web through google and read about your son. Have faith. My daughter Chiara lives through JMML and is 3 years post-transplant. Bone marrow transplant does cure half of kids with JMML and a second transplant in many cases cures those who relapse. There's more updated information at jmmlfoundation.org than you received. There's also an online support group where you can talk to many encouraging and caring parents who have gone down the same road you're on: it's at http://health.groups.yahoo.com/group/jmml_support/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1. If I can be of any other help, feel free to write me at fdini@jmmlfoundation.org.

Fred Dini

Linsey said...

I can't wait for Ethan's success story to be printed on those pages to offer hope to other parents!

Sarah said...

Kasey I agree, you nailed it and you are so right!! Nathan and I pray for you and Ethan at night-night time and we sing our night-night songs to include Ethan in them! Please give Ethan a big old hug and kiss from me and Nathan... and give yourself a HUGE hug from me!! Keeping you continuously in our thoughts and prayers!

Mrs. MK said...

Listening to the unchanging Truth of God's never ending compassion and love through difficult times, even when it doesn't *feel* loving and gracious and kind, is the only way I know of surviving this bleak time. Prayers for you....

Anonymous said...

Kasey,

Too much information is NOT a good thing. I much prefer the word of God over the words of "medical experts". God is the Greatest Physician ever, and Ethan's life is in HIS hands, a great place to be. Obviously, from the pictures we see of Ethan, he is thriving very well in spite of his illness.
Keep the faith! God is a worker of miracles.

Mary

Benetta said...

Good for you Kasey, Stay encouraged and watch GOD be glorified!

Curt Dunn said...

As I have mentioned many times before, I am willing to help when you are ready to publish your blog in book format... today's entry was especially encouraging.

See you Sunday...

Niki said...

Kasey-

I found your site through Alex Wiser's webpage. I don't even know where to begin after reading most of your posts......you are an exceptional writer, and a remarkable mother with one of the strongest faiths I have witnessed.
I am not sure whether to remark on EVERYTHING I have read right here, or respond to each post, but there are so many things you have writen that I can either completely relate to, or just have positive comments to add.

In order to keep this somewhat brief (hard for me to do!), I will just say that I am also the mother of a JMML child....make that OPTIMISTIC mother....I am a "glass is half full" kind of girl--always have been, always will be. I like to be fully informed about things in my life...I try to be realistic about everything just so that I may be prepared, but then I choose to spend the rest of my time with faith and hope........there is always hope to hang onto, and so that is what I do.

If you want another shred of hope to hang onto, I can share some with you in my son Brian. He was one of those "rare" cases you are now a part of yourself. He was born with JMML, diagnosed initially at 7 days old, and then again confirmed at 4 mos of age. He had his transplant at 9 mos of age.....we travelled 500+ miles away from home for his transplant. Initially he engrafted, but just like all those statistics state, he relapsed after 2 mos....were we surprised? No, we knew that was a great possibility, but it was worth the risks and the stats to at least try. Were we disappointed? yes

To make a long story shorter, we took him home and tried to get him stable enough to try transplant again. It took 2 yrs (and yes, some of that was quite scary and rocky), but he was finally stable enough to go back and try again....using the same donor, with stem cells this time, he had his second transplant, at 2 1/2 yrs of age......this time, IT WORKED!!!

That was June 11, 1999.

9 yrs later, at almost 12 yrs old, he is here and THRIVING.....note that I did not say "normal".....that word has been re-defined in our lives, but he is here, and leukemia free. I won't go into every detail, but he does have some issues related to treatment, but once again, it's just something we deal with, something we knew from the statistics was possible, and something that we accept as part of the miracle of him surviving.

I know that Fred Dini mentioned our JMML parent support group--it is private, and if you ever want to join to talk to other parents of JMML kids, feel free. Otherwise, if you ever have other questions, or need support, let me know personally, anytime.

Even though Brian is so far out from treatment for JMML, he still has a webpage where we occasionally update what is going on in his life---which today is the closest thing to "normal" that he has ever had. It is at: www.caringbridge.org/visit/briandaubach

I send you and Adam and Ethan my best wishes, thoughts and prayers as you continue this journey....it is not always easy, but as you already mentioned in one of your posts, there are many good things that come from such a journey....my "silver lining" in ours is all the wonderful families/children/caregivers we have met along the way, who mean more to me than I can ever truly express.

All the best,
Niki Daubach

Elizabeth said...

kesey,
AMEN!! I agree with you, my family and me pray for you and Ethan. Please give Ethan A BIG HUGE HUG and KISS from us. And give yourself a HUGE HUG from me!!!

Elizabeth&Family