Adeline's Appointment with the Allergist and Pulminologist

Boy this kid sure gets a lot of press. Hopefully, someday, I won't have to write about her severe allergies and asthma anymore.

We had her allergist and pulminologist appointments this past week. Scott and I weren't very impressed with the allergist and so we are looking to get a second opinion with someone else. Right away he dismissed her allergies. Even though we told him about the many different tests she had done he questioned the allergies she has. Granted, her beef allergy is highly unusual anywhere in the world and her egg allergy is unusual here. And I'll also grant that we didn't have her records with us...my bad. However, we want, need, to have confidence in the person who is treating our daughter, especially when that treatment potentially involves immunotherapy!!!

After the appointment we promptly bought the medicine he prescribed, Symbicort Turbuhaler - an inhaled corticosteroid and long acting beta agonist- only to read in the insert that it is contraindicated in people with lactose allergies. Scott took the medicine back to the allergist and was told there are different milk proteins and she wasn't allergic to that one. Now how he would know that without seeing her tests, and without testing her, still escapes me. We decided I would do some investigating and also confer with our doctor and her allergist in the States and go from there.

Everything I found out from online errored on the side of caution. Basically the lactose is supposed to be safe for people with milk allergies but (and this is the part that helped us decide) there is a possibility of milk protein (0.012-0.029%) in pharmaceutical grade lactose. Also one asthma medicine (Advair Diskus) also containing pharmaceutical grade lactose says, "contraindicated in patients with IgE-mediated allergic reactions to lactose or milk" .

Keep in mind that her last RAST test at 6 years old revealed that IgE levels to milk were 31.50, more than 31.15 higher than the normal (under 0.35 non-allergenic) level. Knowing that she would be inhaling this medicine and that it has the possibility of bringing on an allergic/anaphylactic reaction, possibly at night when she is asleep, we felt that even this small amount of milk was essentially playing Russian Roulette with her.

All that said we are looking for the same medicine that was prescribed but is in an HFA inhaler and doesn't contain the lactose. We were told it isn't here in Uruguay. I just found the web site for AstraZeneca here in Uruguay and we'll be contacting them to see what we can do through them. If we can't get it through them, then we will look to having it sent to us from the States or Argentina. Which should be fine because we would be able to prove to Eduana (customs) that it is not available here.

Now for the appointment with the pulminologist. We felt much more confidence in this doctor. She actually did an exam. She also took the time to listen to us and our concerns. By this point we had some of Adeline's records that were faxed to us by our doctor in the States, and so, she was able to see for herself the seriousness of Adeline's allergies and asthma.

I'll make this really long story shorter by telling you that she has ordered a Spirometry exam to check her lung function and also another Cystic Fibrosis test and some chest x-rays. Those appointments are coming up and we'll have to go to Montevideo for those.

We would appreciate your prayers for this. We know God knew all of this when He sent us here and He knows how to solve this problem with the medicines. And we also know He knows exactly what is happening with Adeline. I admit that the possibilities of what could be happening are not encouraging. Even if it's "just asthma" she has gotten to the point of needing a double inhaler and she's only 8! That, however, is far better than the possibility of Cystic Fibrosis.

Preaching on Devotions

Last night's youth meeting was very good. The first 5 week block ended last week so this week we played a game of cooperation and memory. The girls won!!! Barely.

Scott preached about the importance of personal devotions. In the clip above he was explaining that if we can have a victorious life when we are walking close to God. Scott really did a great job preaching! It seemed like it was the first time he really had some freedom, within the language, to really express himself well in Spanish.

The first block of Sigma went pretty well. There are definitely some things we need to adjust to be of a greater benefit to this particular group of young people. We also have a better idea of the strengths and weaknesses of individuals. So this coming week will be exciting as we plan the next block.

Happy Birthday, Scott!

Several birthday cards are sitting on our office desk waiting to be opened by Scott. I don't think he's as happy as I am that he will be another year older. Of course, that is because he will be the same age as me again. In case you're wondering how old he will be I can tell you that I'm celebrating anniversaries of my 21st birthday. And Scott? Well, he'll be 38!!

HAPPY BIRTHDAY SCOTT!

17 years ago...

Scott and I had a very interesting day!!! Most people have one or two crazy things happen on their wedding day, we were no exception.

Expecting our wedding party to help with the decorating and set up of the church only to find out, that morning, that they had spent the night at a theme park and were all sleeping in definitely caused some stress. Scott with his mom and step dad and I went to the church and did all the decorating ourselves. I was able to make it back home with enough time to grab my dress and head back to the church. No shower. No special hairdo. And fake fingernails that kept popping off.

I wasn't sure what to expect for the ceremony but in spite of the crazy morning things went pretty well. Even when the flower girl twisted and turned and swung her basket through the ceremony. I guess totally losing control of my emotions and crying through our vows, which in turn made people in the auditorium and some of the wedding party cry too doesn't seem as horrible today as it did back then. The pictures turned out great but we can't hear the ceremony on the audio tape...must have been the firetrucks with sirens on driving by outside.

Although simple, our reception was really nice! I definitely enjoyed the portion of the cake Scott fed me. And seeing all my family and friends in one place was wonderful. That was actually the most normal part of our day.

As a wedding gift, Scott's brother gave us a limo ride to LAX international airport to catch our plane to Miami. Here's where things get really wacky.

Shortly after arriving home the limo driver called to see if he could show up late. As it was we had enough time to make it there, barring any problems, with two hours to spare. Now, if you will, picture me standing beside my new husband vigorously shaking my head, while my very gracious husband agrees to the delay. Here is where the soft sweet melodious music changes to something, well, a little more strained.

The music begins to gain momentum as the promised limo driver doesn't show at the newly appointed time. Then when the very late driver finally shows he is surprised to see us walking towards the limo with no luggage. Evidently it didn't occur to him that it was his job to carry our bags. Nor did he think we would smell the lingering odor of vomit in the limo.

Finally on our way...and did I mention we were late?...we get about 45 minutes into our trip when I hear an explosion. Picture me giving myself whiplash as I turn towards Scott and ask, "WHAT was that?" But I didn't have to wait for him to answer because the driver decided to pull over. (You are hearing the music, right?) But he doesn't pull over in a normal spot he decides to park in the triangular area of an off ramp and an on ramp.

He gets out of the limo and heads to the trunk. At the same time Scott gets out of the limo to help him. It turned out there was nothing to help him with because the spare was flat too. So he says he would use his cell phone to call the office but...oh, you're not going to believe this...it was dead!!! AHHHHHHH!

So I think, "Ok, at least there is an emergency phone on the freeway that he can use." Just then he says he's going to go call for help. However he doesn't head for the emergency phone just yards behind the limo, he runs off the freeway and disappears into a shopping complex. Thankfully, he left the limo running because though it was October it was still in the 80's and the air was nice.

Shortly after Mr. Chauffeur runs away, the CHP (California Highway Patrol) shows up. Boy was I relieved!!! The relief lasted a mere moment because Mr. CHP tells us, "I would call AAA but because the limo is parked illegally they cannot help because they would be blocking the on/off ramp to the freeway! And I can't help because it would endanger my life. But if the limo can be moved." Now picture, if you will, that at that moment the limo died because the alternator went bad. Maybe we didn't need the air after all because it was getting awfully chilly in that limo, if you get my drift. :-)

Finally, Mr. Chauffeur returns to tell us a new limo will be there in a few mintues. But was coming from a town 45 mins away, hmmm. Now I'm thinking...um, sorry, Mr. Chauffeur we don't have any extra time because the extra time we did have is already gone and if we don't leave NOW we won't make our plane.

Suddenly a limo appears on the horizon of the opposite side of the freeway. Mr. Chauffeur begins frantically waving his hands like someone stranded awaiting rescue. I'm sure he was hoping to be rescued from me. The limo driver on the other side of the freeway sees this and takes the next exit to come to our rescue.

Though not the replacment driver, and with another company, this driver agrees to take us to the airport. My frustration turned to fear as the speedometer hit 90 mph and the driver was whipping in and out of the heavy Los Angeles traffic. Knowing we likely would miss our plane he allowed us to use his cell phone to call the airlines. Unfortunately they couldn't hold the plane for us.

While making conversation with us the new driver asks us about Mr. Chaffuer and how we ended up in the present predicament. He then tells us that Mr. Chaffuer would have needed to drop us off in the parking garage because he didn't have the needed permit to drop us off at the departures area. Hmmm.

Once we arrived at the airport we needed to re-book our flight for a red eye. What was a non-stop flight to Miami, was changed to a lay over flight through Dallas. Oh, I forgot to mention that we were taking a cruise and if we weren't on the ship when it left, then, well, we would miss the boat...literally. And at this point I'm thinking we've missed the boat and our money was wasted.

Thankfully, though, we did make the ship...but barely. The honeymoon cruise through the Bajamas was well worth the money. During the cruise we get a phone call from Scott's mom to let us know that the limo company wants to pick us up from the airport. Now remember that they can't pick us up at the gate, and picture a younger me once again shaking her head while her younger husband says the dreaded word, "Ok!"

Now the trip home is a whole other story, though I think that's for another blog post, after all it is Sunday and I need my afternoon nap.

Adeline's Asthma

Ever since Adeline played with the egg and peanut laden toy, back in April, we have not been able to gain control over her asthma. After she was back in the ER for the second time I was able to convince the doctor, by showing him her peak flow readings, that her asthma is not under control.

I tried to express my concerns with him that either the medicines she is currently taking are not effective for her, or they are bad - not what they are supposed to be, and/or we are dealing with something more than normal asthma. He agreed and wrote referrals for her to see a Pulmonologist and an Allergist.

Monday we will head into Montevideo for her appointments. They are actually spread out over two days with one on Monday afternoon and the other on Tuesday afternoon. Please be in prayer that we will be able to effectively communicate with the doctors, that God would help them to discover what really is happening with her, and for traveling mercies.

Meekness

We still have sick children and so I missed another youth meeting. I think we might finally be through it all...at least I hope so.

The devotions this past week were on Meekness. The memory verse of the week was:

2 Corintios 3:18 "Por tanto, nosotros todos, mirando a cara descubierta
como en un espejo la gloria del Señor, somos transformados de gloris en
gloria en la misma imagen, como por el Espíritu del Señor."

The young people studied passages in the Psalms, Numbers, Isaiah, Matthew, Galatians, Amos, Colossians and Zephaniah.

Scott played the dictionary game with them. Where they were given a word from the dictionary and they had to guess the next word. Last week was puzzle week where they had to put together puzzles. And the week before that, the numbers game was played, where they were asked different Biblical questions involving numbers. We have tried to vary the games to give opportunity for everyone to enjoy the games.

This week I would like to explain, in part, our philosphy of games. I know there is a lot of speculation about the use of games, or fun, in youth ministry. Scott and I believe that games serve a purpose in youth ministry. They should not be the focus of youth meetings. Nor should we use, or play, games designed simply to embarrass and humiliate the young people playing. In other words, if our youth ministry is based solely on having fun than we are missing the boat....completely! Our focus needs to be on the Lord. On helping the young people to grow closer to the Lord. Teaching young people how to walk with Him.

Games used before the preaching service help to expend some energy. Games are a tool. Games are an avenue to look into the spiritual lives of the youth, and adults. For instance:

How do the young people, or adults, respond to losing?
Or to winning? Do they win meekly or rub it in?

Do they use their cheering in a manipulative way? Do they respond in a prideful way, unwilling to clap or cheer for the other team? Do they boo? Do they grumble? Do they hotdog (i.e. someone who always takes the ball, to be the center of attention)?

Do they question the results of the game? Do they complain about someone judging unfairly? Do they say the other team cheated? Do they cheat? Do they say negative, or discouraging things to the other teams?

Do they play the game at all? Do they have a reason every week why they don't need to or can't play?

All of these same questions could be asked in the postive sense. And it would give an indication as to how the teens, and adults, are doing spiritually. Watching the young people play the games and compete in other areas, such as for the weekly flag, helps us to better know how to pray for them. It helps us to see which young people, or adults, are going to have a positive or negative impact on the other youth. It helps us to know how to individually disciple each young person.

Scott and I believe that the way we play games shows one of two things: pride or meekness (humility). I'll never forget playing a game with another couple during Bible College. The husband was constantly changing the rules to help him win. When that didn't help he would do something completely different. It was a horrible experience!!! After we left, I cried all the way home. And I've never been able to play this game again with any sense of enjoyment. Something that should have been fun was ruined by pride. Not surprisingly, our relationship was also damaged with this couple.

I am wholeheartedly competitive, as Scott will tell you, but I learned from that one night that the way I respond to losing, or winning, especially in a church event, could cause someone to walk away from a relationship with the Lord because they did not see Christ in me, in my reactions or responses. For those who love to win, it takes a lot of humility to lose well and to win well. And games are a tool to teach meekness.

Big Bad Bacteria

Last week was an adventure! Monday we headed to Montevideo to have my feet checked and scanned for shoe inserts. I've had a bunion on my left foot since I was in high school and though it has bothered me I've adapted to the pain. Lately, though, it has really been bothering me. Right now they doctors have opted to try and help my foot through means other than surgery. I'm not sure how much I'll like the inserts but I'm definitely hoping they help.

Back to last week. Early Tuesday morning I heard a loud rumble coming from the vicinity of Silas' bed. More specifically his diaper. Fun. Well, not really, especially since I had to change his clothes because the excessive amount of diarrhea was not at all contained. After laying him back in bed and going back to sleep I was once again roused by sounds of rumbling. This time though the sun was up and so after I changed and fed him I took him out to Scott.

Just as I was planning my day, which included helping over at the kids school, Silas had a large rumbly in his tummy that escaped out his mouth. Definitely not Winnie the Pooh's Huny. I don't do well with stuff like that!!! I was praying that would be it. It wasn't.

So after 4 days of diarrhea, several vomiting episodes (including two all over me), fever (on and off) a sunken soft spot, dried out lips, lethargy, and fussiness we took him in to the hospital. The on call doctor checked him and quickly called in for the pediatrician. Once Dr. Llambi saw Silas he told us he was in need of rehydration. So up we went to the pediatric room. This was the first IV, which he pulled out about an hour later. Actually he didn't pull it out it flew out when he swumg his arm. And that was after he had already been poked to have blood drawn.
Silas was clearly perplexed by this painful addition to his arm.
Figuring he'd make the best of a bad situation he decided to chew on his IV line.

After two attempts, his new IV line is in and secured better this time. (Below)
Playing in his bed. He was definitely feeling better.

The swollen eyes after being on Lactated Ringer fluids. I'm a little concerned by this as it looks very much like an allergy. He hasn't had any problems with dairy though so....

So now we are home and Silas is on antibiotics for an intestinal bacterial infection. And since today he is 11 months old this will be his 11 month old post too. Only one more month to go and he's a year old. Wow, where did the time go?

Honesty

The young people learned in the preaching time last night that there are 5 sins they/we should avoid: Lying, Anger, Stealing, Saying bad words and Bitterness. I was hoping to really highlight the preaching time this week, however, I wasn't in the service last night because I was in the hospital with Silas (more on that later). So instead I'm going to highlight the devotions.

We are using a portion of devotions that Pastor Jim Ogle, youth pastor of Emmanuel Baptist Church, has graciously sent to us. Brother Jim's devotions were a blessing to us when we served with him in the youth ministry. If you would like to view a PDF format of his devotions please visit EBC - Proverbs devotions.

Devotions are a very important part of our Christian life. It is the time where we open up God's Word for Him to speak to our hearts, for Him to reveal sin, for Him to encourage us, for us to grow more Christ like, and among many other things, for us to learn to walk with the Lord. It is also our time to talk with the Lord in prayer. It is our time to be fed spiritually.

The affects of starvation are obvious. One needs only to look at Holocaust or POW photos to realize the truth of that. Just as obvious are the affects of spiritual starvation. Personally, I know when I have not spect enough time with the Lord. My attitude begins to change from thinking on the positive to the negative. My speech begins to change to saying kind words to speaking harshly. I become easliy discouraged. I am negative.

Our desire is to teach the young people here to feast on God's Word. To learn about God and learn about Jesus Christ. They will be the future of the church here in Uruguay. We pray they will be a strong foundation built upon the Word of God.

Honesty was the theme for devotions this week. The weekly verse was Ephesians 4:25 and these aspects of honesty - Our spiritual life is affected by honesty, the way we speak needs to be honest, we need to be honest in everything, God is honest, the Word of God is honest, and we need to be honest in our relationships.

Most of us would say that honesty is important. We want our children to tell us the truth. At times we ask our friends, spouses and parents for their honest opinions. "Well, to be honest." "Honestly..." and "Truthfully..." are all phrases we use. Just as honesty reflects the Holiness of Jesus Christ, lying (even little white lies) reflects the sinfulness and pride of our hearts. God tells us that lying lips are an abomination to Him.

Why is it that God so dislikes lying? For one reason dishonesty is rooted in the father of lies, Satan. Satan, who lied to Eve by using a version of the truth, placed a seed of doubt in her mind. That little bit of doubt, from that one lie, forever changed the world. In the moment that Satan's lies took root in Eve's mind she began to question the character of God. The truthfulness of the One Who is Holy and Just. And in that dreadful moment when she reached out and took the fruit off the tree of the knowledge of good and evil, when she then chose to eat that fruit, and Adam with her the world was plunged into darkness. It was for that moment that all mankind was separated from God. It was for than one moment that sin was passed down through man, leaving all men with the need of a Savior. For one "little" lie!!! It was for that moment that Christ came to earth and died on Calvary's cross. It was for that moment that Jesus was raised up from the dead to conquer sin and death. (Genesis 3; Romans 3:10, 3:23, 5:8, 5:12, 6:23, 10:9-10)

Gratefulness

This past week's devotions were on gratefulness. Tonight's message focused on the theme of this weeks devotions reminding the young people to be grateful. One of the passages used was Esther chapter six, which holds a treasure trove of lessons we could learn about gratefulness...faithfulness....meekness...pride....

Because King Ahasuerus was grateful that Mordecai saved his life, he honored Mordecai. After Mordecai was honored he went right back to sit at the king's gate (faithfulness). Because Esther was meek towards her husband the king he honored her by allowing her to make a request of him. And as a result of Haman's pride he was hung on the very gallows he had made to murder Mordecai, and all the Jews including Ester.

I'm not really sure if all that was preached on tonight because the young man who was preaching speaks so fast that often I get about a quarter of what he says. So the above is just my input on things I learned while studying this chapter for the past couple weeks.

Even though I didn't understand all the message I really enjoyed tonight's youth meeting. I was so encouraged that I got to listen to verses said by teens who are faithful in their walk with the Lord, but also (especially) by teens who have really been struggling. The teens collectively said 190 verses this past week. There were several chapters of Scripture that were quoted. Twenty-six young people completed their weekly devotions. And on one team everyone completed their devotions for the week. Praise the Lord! Keep praying!


PS. For all the interested SIGMA teens and workersthe Black team won last week, while Blue won the Devotions and the Game, and Red won the Verses. Oh yeah, brother Jim, now I understand how that happens!

Gold Ribbons for Childhood Cancer

Dear Friends,

I hope you don't mind that I have passed this letter on to you from a dear friend of mine, Sandy Smith. I'm sure after you read of her families experiences from their first month after diagnosis of both breast cancer for her, and brain cancer for their son, you will be touched by their story.

In the past four years I have known four children with childhood cancer - the preschool son of a friend who died from an undetected brain tumor; my second cousin who endured 3 surgeries, chemo and radiation; a girl in our church here in Uruguay who is has already been in the hospital for a month; and Andrew Smith whose inoperable brain stem tumor gives him a terminal diagnosis. In each of these cases the battle has been with cancer of the brain of varying types and all of these children have been younger than 8 years old.

The Smith family are in the ministry and we are richly blessed to have met them as we presented our ministry in their church. Since that time we have become good friends and our families have had ample opportunities to bear each others burdens through prayer. We know you have also been in prayer for them. I believe you will be blessed by the evidence of God's work in their hearts and lives. Thank you for taking the time to read Sandy's letter.

For the families battling childhood cancer,

Debbie Borrmann
_______________________________________________________

September 26, 2008

Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month?
I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.

Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with—and dying from—cancer desperately need that same attention...and funding.

Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”

September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news—but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”

Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?

When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.

The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.

How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?

How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?

How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?

How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?
How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?

Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?

Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosis—do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....

I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of four precious children who died this week—within 48 hours—as a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...and Brynne. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of child belonging to someone in the media? Will it be your child?

Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.

A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.

With Hope for Our Children,
Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
www.caringbridge.org/visit/aws
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