Thank you for taking time to follow Meaghan's journey of healing as she battles Medulloblastoma, a form of brain cancer.

Meaghan, our five year old daughter, was diagnosed early November 2009 after an MRI revealed she had a 4 cm solid tumor in her cerebellum. The tumor resection, while successful, resulted in serious complications.

Cancer is a family affair and here I try to chronicle not only Meg's journey, but our whole family's as well.

Saturday, February 27, 2010

Rally the War Cry

Meaghan came home from the hospital yesterday. The very abbreviated version of what her new complication is: her stomach doesn't empty and she has bad reflux. This is like a torturous, never ending game of Clue. The problem is all the characters are conspiring together. Posteria Fossa Syndrome - check. Radiation - check. Chemotherapy - check. Assorted Pharmaceuticals - check.

Together with her team of doctors, nutritionist, pharmacist and dietician we adjusted some of her meds, added some new meds and administered a lower volume dose of chemotherapy. Some of these news drugs will cause more diarrhea, but will hopefully restore stomach motility. If the new meds work then Meaghan can avoid having her G-Tube pushed down into the top portion of her small intestine. (By moving the feed tube, we bypass the stomach and administer nutrition directly into the intestine thereby increasing rate of absorption and avoiding vomiting.) We are following up with her pediatric GI doc in two weeks to make that determination.

This was a particularly taxing and scary week. Meaghan was not well at all. She's lost a bit more weight, when there wasn't any to spare. She was very dehydrated. Slept all the time. If these decisions to change aspects of Meg's care sound as though they came easily, they most certainly did not. Ed and I had a conference with her oncologist - a long one. We cleared the air, set the tone for future communication and reestablished rapport. Not an easy feat. I am a watch dog of a mother; a control freak bar none. I am keenly tuned in to Meg's health. The oncologist expects a level of trust that I'm simply not willing to give - yet. Until the bitter end, I will second guess every decision we make. If I struggle trusting my own decisions, I'm sure as hell not going to trust anyone else's. We compromised. I will relax, if he in turn will respect that I will not accept out-of-pocket his decisions. He must explain himself fully and to my satisfaction. I get that I'm a fast learner and relatively intelligent. Yet despite my newly acquired medical lexicon, I am not a doctor.

I am a terrified mother.

I am a terrified mother committed to balancing my daughter's quality of life with her morbidity.

Yes, I've gone there. The more fearful the decisions or situations, the more committed I am to facing them squarely. The entire Pediatric Floor is aware of this. All our family and friends need to know and trust that we are asking an endless number of questions. Meaghan's situation doesn't allow for a simple fix. To borrow two phrases I hate: she is too multi-factoral and poly-pharmaceutical to treat in black and white. At this stage of the game, to question us is to culture doubt and fear when it already clouds our lives. Everyone so loves Meaghan and is invested in her recovery, but no one more than her Mom and Dad.

We desperately need continued support from our friends and family, however. We need unceasing prayer and patience. We need unwavering support as we face unthinkable scenarios and decisions. In light of this last week's events, I have a very specific request.

I need to rally a war cry. Whether you know Meaghan personally or through her blog, I am asking everyone out there to post what song comes to mind when you think of Meg and her daily heroism. Please indicate the song title and artist. My goal is to make a CD for Meg to share with her all the support and love she is receiving from her extended family.

Please say an extra prayer for all parents of children with cancer. We are foot soldiers together.


  1. I know I have said this before - Meg is truly blessed to have you and Ed as the parents fighting this battle with her. She can be assured that every decision that is made regarding her care is done thoughtfully and prayerfully with intelligence, vigilance and great thoughtfulness. My song for Meg and for your whole family is "Everlasting God" by Chris Tomlin. As always we are praying, praying, praying and trusting, trusting, trusting in our Everlasting and Gracious God.

  2. Aussie and I have only met you a few times but you are all fighters in our eyes. We applaud your strenth in fight to do what is best for Meg. Keep it up! As a physical rehab nurse I see so many fight every day, every hour to get back their lives. They and you are our heroes. Melissa Etheridge's I run for life gives me the fuel I need to make it thru some tough days. Puppy smooches from Aussie sent so Meg can give us another big smile.

  3. Hey -

    I posted this on Facebook as well, but I wanted to post it here, too:

    Hey Meaghan and the amazing Moleskis! Here are my contributions to the rallying cry from the blog:

    Beautiful Life - Ace of Base

    Survivor - Destiny's Child

    A bit of old skool
    Break My Stride - Matthew Wilder

    I'm sure I'll think of more - KEEP FIGHTING!

  4. Hey Amy! The song that came to mind is really for all of you and your daily struggles.

    Josh Groban - Believe

    As always we are here for you and praying unceasingly.

  5. Amy,

    I found your site through a google news alert. My name is Kathy and my son Steven was diagnosed with a supratentorial PNET in Sep. 03 3 days after his 9th birthday (a medulloblastoma is an infratentorial PNET, same hideous cancer, different location).

    His was huge, baseball-sized. We took him to St. Jude in Memphis where he was treated on their SJMB03 protocol, whole-brain and focused radiation followed by four cycles of high-dose chemo / stem cell transplant.

    He is now 6 1/2 years post diagnosis and is doing well, in his first year of high school.

    I would like to let you know of an online support group for medulloblastoma / PNET, a great place for questions and sharing your experiences with others who understand what you're going through:

    There is also a larger group for the parents of kids with all sorts of brain tumors, the e-mail traffic on that list is much greater than for the medullo list. I am a moderator on that list and if you are interested let me know and I will send you an invitation.

    Going through treatment is so hard, but your family sounds as though they are managing as well as anyone does.

    I will keep Meaghan and your family in my prayers and please feel free to contact me if I can be of any help to you, we've learned a lot along this journey.

    My e-mail is: bkbell * at * gmail

  6. Praying for you everyday Meg!!! hang in there. Ed, Amy, anything you need, anything at all,let us know

    Wind Beneath my wings, Bette Midler

  7. Hello, I am a friend of Tracie Berghaus. After catching up on your BLOG tonight, there is a song I want to share: "Praise you in this Storm" by Casting Crowns. I know I can come up with more, but it is late. I will send more as I think of them. What a wonderful idea to put together this music. I have kept you all in prayer since the time Tracie e-mailed me with "prayers needed" from the very beginning and will continue. The power of prayer is awesome!! "I can do all things through him who strengthens me." Philippians 4:13 It is hard, I know that. It is a cross to bear. I have a son with Down Syndrome and have been in similar situations, but not to your magnitude. My prayers are with you always!!!!!

  8. Ed, Amy, Meaghan, and the whole Moleski family:
    My thoughs and prayers are still with you each and every day. Please don't be afraid to call on us if there is anything at all that you need. Hope you like these songs as much as I do. Lots of Love, Rachel

    "I will survive" by Gloria Gaynor
    "Our God is an Awesome God" by Michael W. Smith
    "Be Strong and Courageous" by Michael W. Smith
    "On Eagles' Wings" by Josh Groban

  9. Let me try this again!!! I wrote a great comment and then "cyber-space" ate it!!! I am Charlie Jones mom. My other son has a boy who had a Whilms tumor when he was 3. Kevin is 12 now, and cancer free, praise God!!!I read your blog every time I come to watch Campbell. My heart goes out to all of you.
    I am a retired R.N.
    I read the blog about your trip up to Great Wolf and how Meg enjoyed being in the water. I'm wondering if there is a P.T. facility locally that has a heated pool where Meg could have some of her therapy? She'd love it!! I know of one place on Harper, just before 12 mile that has such a pool, but I have never seen children treated there. It's call Mobility Plus. I go to their facility in Clinton Twp. and I will inquire.
    Well, hopefully by using my friends gmail acct. address this will get to you.
    Love and God bless.
    Nancy J

  10. Amy,

    There are two songs I wanted to share... but I suppose they more make me think of you right now I guess...

    This is the Life by Wendy & Lisa

    This Woman's Work by Kate Bush

    My thoughts and prayers are with you, Meg and your entire family.

    ~ Katie

  11. What a cross you guys are having to bear. I am saying an extra prayer for doctors dealing with your questions. If only we could see their expressions. Keep up the good work. While I know it is diffcult to put our trust in people, I pray you continue to put your trust in our Lord. Since your discussions have "went there", I am sure you continue to place your trust in Him. The song that makes me think about Meg is "It's My Life" by Bon Jovi. Seems to fit her personality and you need some fast songs on the mix tape. I would also put "Amazing Grace" on there as well. That song is fitting for all of us.

    I leave you with the verse from a friday devotion.

    Gal 2:20b "And the life which I now live in the flesh, I live by the faith of the Son of God, who loved me, and gave Himself for me."

  12. I think Meg will enjoy "She's a Rainbow" by the Rolling Stones.

  13. Hi Amy...
    Although we have never met, our daughter Cameron is in 1st grade at St. Peter's - this is our first year there. I want you to know that I follow your blog and Meg's progress religiously...we include Meaghan in daily prayer at our house. The songs that I think that would be good ones for her CD are: If You're Going Through Hell by Rodney Atkins and also Terrified by Katharine McPhee...

    I cannot fathom all that you are going through, both as individuals and as a family. I wish nothing but peace for all of you!

    ~Rebecca Marchetti

  14. Hello Amy,
    You do not know me. I work with Michelle J.. I am praying for Meaghan and your whole family. Praise God for your continued faith.

    My song for you is "Everything" by Lifehouse.
    My song for Meaghan is "All Things New" by Steven Curtis Chapman.

    "Fear not, for I have redeemed you: I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

    For I am the Lord, your God...your Savior"

    Isaiah 43:2-3

    Marsha Fenner

  15. Amy,
    My song for Meg is "Change" by Taylor Swift. If you need to swear some more, give me a call - I can take it!
    Love you,

  16. Amy,

    It has taken me forever to find a song for Meaghan but I keep coming back to the same song ~ All That I Can Say by the David Crowder Band.


    Lord I'm tired
    So tired from walking
    And Lord I'm so alone
    And Lord the dark
    Is creeping in
    Creeping up
    To swallow me
    I think I'll stop
    Rest here a while

    And didn't You see me cry'n?
    And didn't You hear me call Your name?
    Wasn't it You I gave my heart to?
    I wish You'd remember
    Where you sat it down

    And this is all that I can say right now
    And this is all that I can give

    I didn't notice You were standing here
    I didn't know that
    That was You holding me
    I didn't notice You were cry'n too
    I didn't know that
    That was You washing my feet

  17. Amy,
    I've been thinking and praying about a song for Meghan and God keeps putting this one before me, it seems to be on the radio at least once a day when I'm in the car. "Safe" by phil wickham, and this one is just good for so many reasons: "Love them like Jesus" by casting crowns. We're praying for her ( & all of you! )

    Lisa (karla's sister)

  18. Semisonic "Made to Last" is on my ipod as I check in on Meaghan. Happy St. Patty's day little one. Much love, strength, patience, grace, prayers, peace, and sunshine to the entire Moleski Family. You are all in our thoughts and prayers - The Arizona Irwins

  19. Sorry this took so long, but I wanted to get it right:

    Kooks, David Bowie

    ~ Greg


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