Tuesday, October 28, 2008

The Brave Little Soul

Earlier, I mentioned the beautiful child, Elizabeth Doxey, had recently earned her wings. Her mom, Lynn, posted the following poem on Elizabeth's website, and I found it particulary wonderful.


Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for this day she saw suffering in the world. She approached God and sadly asked 'Why do bad things happen, why is there suffering in the world?'

God paused for a moment and replied, 'Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts.' The little soul was confused. 'What do you mean?' she asked. God replied, 'Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their motivations disappear and they become motivated by love alone.'

The little soul began to understand and listened attentively as God continued. 'The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer to unlock this love - to create this miracle - for the good of all humanity.'

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings, fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave, let me go. I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!'

God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this, so I have carefully selected many souls to care for you on your journey. These souls will help you create your miracle, however they will also share in your suffering. Two of these souls are most special and they will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. Elizabeth Jane.'

God and the brave little soul shared a smile, and then embraced. In parting, God said, 'Do not forget Elizabeth that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought and, I will bring you home.'

Thus at that moment, the brave little soul was born into the world and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy, found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant families reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle happened. And God was pleased.

Nick is our brave little soul (ok, brave tall soul) and I am grateful for the spiritual journey we are on together. I'm grateful for him unlocking the goodness and love and I'm grateful for all of you that have come together to join us in this journey and witness this miracle of His love.


Friday, October 24, 2008

How about some good news?

Time to cherish some good news received this week...

26-year old rec'd clear scans; will keep his remission in check and is good to go for another 6 months.

7-year old had clear chest x-rays after only 3 months of chemo - tumors have vanished.

6-year old had MRI verifying continued remission status.

2-year old had clear x-rays; in the middle of treatment.

Here's a big one: I received an email about a drug company and a cautiously but promising new wonder drug. It's pre-clinical results claim: "Complete responses were observed following a single intravenous treatment in the majority of neuroblastoma models and in all alveolar Rhabdomyosarcoma tumor models, demonstrating both activity and potency." There are current clinical trials, but for 18+ patients. It's also supposed to have low toxicity! Check out the full article at http://tinyurl.com/5hrcc4.

And just for fun, a goofy picture of Nick taken up in Canada.

Have a fantastic weekend!


Monday, October 20, 2008

New Angels

This has been a particulary rough month for rhabdo warriors. I continue to participate in an online rhabdo support group and within the last two weeks alone, we have 4 new angels: Danny Zabicki, age 17; Chloe Schmidt, age 7; Finn, age 3 and Elizabeth Doxey, age 8. Elizabeth was one who pulled on my heartstrings as I got to know her over the past year. It was so sad to learn she had earned her wings on Friday. Yet, she had been battling this horrific disease for 3 years, non-stop - so we are grateful she is no longer suffering and is now in comfort and peace. It is her mother and brother that I hope you will say a prayer for as well as the family members of Danny, Chloe and Finn.

Some days are very, very hard. Today is one of those days. Maybe we can all hug our children a little tighter; pray with a little more reverence; express gratitude with a little more sincerity; respond with a little more kindness; view our world, not just our homes, with a little more awareness; and love, love, love.

I am so grateful for Nick's remission, but I am fully aware of just how fragile remission really is. I know I watched a real miracle in his healing. From the very beginning, never once did any of us say, "Why, Nick?" or "Why, me?" but I do now wonder, "Why was Nick spared but not these sweet babies, who also had faith?" Some say this is "survivor guilt", but I'm not so sure. Nothing really feels normal anymore. I just look at Nick and think, "Wow, your purpose here on earth must be REALLY big." Then again, so is mine, and so is yours.

Just feeling a bit out of sorts trying to balance all the life and death going on every day. I'll hand it all over to Christ again and He'll help me stay in the spirit of gratitude and service and understand that unconditional love heals all.

Sheesh, see what happens when I give up diet coke and start training for the marathon in April (for Nick's Warriors).


Tuesday, October 7, 2008

King of the Castle

Hey guys,

Friday I had an MRI and CT scan like I have had every two months now.... And once again they are clear and show no evidence of dissease. If anything the scans look better than the last ones, according to the radiologist. So most likely my scar tissue is going down and almost fully healed. I also had blood work and a chest x-ray on monday that were also clear. (They had to take my chest x-ray twice because my lungs were so big. May be due to all the bike riding I have been doing to school.) I also rode my bike to the Huntsman center to meet with my doctor, and if you haven't been there before, you wouldn't know that is the steepest hill ever for about 150 yards to get there since its at the top of the hill. I almost died peddling up that hill, but I just kept saying to myself... "Lance has got nothing on me, Lance has nothing on me....etc." But when I made it to the top I thought I was going to have a stroke. Ha not really but I was definitely feelin it in the legs and lungs.
So to sum things up I have reached my 6 month mark in remission, so now I only have to have scans every 3 months. So that means I am good through the holidays! Next scans will be in January. Right around the time I will be turning 20, which I am really not looking forward to. Sounds old to me.
Alright got to head to class. Im probably late again. See ya!
Nicholas William Raitt