February 4, 2008

Things are good here at the Weekley household.  Alyssa is doing great and Austin had his first sleep over last night.  I am returning to working horse and have a potential buyer for one of our youngsters.  We are blessed to have work and play that we love!
 
However, life is not going well for many of our neuroblastoma warriors.  There has been a lot of bad news this past week in New York and I wanted to share with you one Mom's update.  This will not be pleasant reading, but it is reality and makes us VERY grateful to be home with a happy, healthy family!!!
 
Love to all,
Paula
 
From Caryn Franca, mom to Nick, 18 years, diagnosed at 15 with neuroblastoma which is EXTREMELY RARE.
 
How do we do it?
We parents get asked this a lot. How do we cope, function, go about semi-normal routines in life? This week was a perfect example of the parallel opposite emotional worlds we live in. One of the early skills to master in all of this is how to absorb devastating news for your own child or another, and keep on going. This week was a promising week for us.

 Nick was told he was going to a less invasive treatment, we made awesome memories on our ski trip, his teachers were supportive of helping him get back in the groove. I started a new training course for my business and felt excitement to be working daily on positive things. I had several emails of people wanting to sponsor the Hubcaps Show and looking into the window of our life it looked completely normal. What people don't see is the way we learn to function and grieve simultaneously.
 
During this same week I got several caringbridge notifications that took my breath away. I would be reading something for work or for Band of Parents Board and then another bad news report would pop onto my computer. How do we do it?

 Carter Moore  lives in Maryland. Went to Sloan for treatment 7 months ago. They never could contain the beast. He is so handsome and vibrant on his website picture. Holly, his mom was optimistic and upbeat when I saw her before Christmas. Carter was sent home Friday on oxygen, treatment..options gone . The beast has taken over liver, lungs in an aggressive way.

Courtney Saunders lives in New York. Zipped into New York for routine scans after reaching a second remission some time ago. Looked the picture of first grade health. her mom and I were email buddies and we finally got to meet. Courtney's cat scan showed new tumor around her aorta, too dangerous to operate, options were palliative at best, they went home to no more treatment. Go on vacation, enjoy this time she has no symptoms, the world of treatment they want no more. They have chosen to stop and just enjoy this time.

 Jack Brown- Dad road with the Loneliest Road, went back to England MIBG showed a miracle at Christmas. Came back to New York and the scan there doesn't say the same. Very close to being out of options. www.

There are more, Austin and Eden are struggling with treatment options.   So why do I share this with you? It is to help you understand that when you see a person functioning and walking through life, you don't ever know what they are really coping with on the inside. I guess I just want everyone to know that each day you get to bask in a world of boredom, routine and good health say thank you.

How do we do it? We have been forced to live as if in a concentration camp. We adjust to the new surroundings and create a world of survival, it is human nature. But each time we hear or see one of our own randomly plucked and taken we grieve but we keep moving, it is survival, it is what we learn to do.

Nick is in bed sick with a virus, cold/sore throat. I can't remember his being "regular" sick but one other time since his diagnosis. We worry it could be something more, but then we try and remember "normal" sick is normal sometimes. How do we do it? We grab every single molecule of good out of each person and experience we have to sustain us as we walk through the horrors as our friends fall and we wonder, who is next. I am sorry this is not the most upbeat entry, sometimes it is just for me to share. thanks for listening!

January 31, 2008

Hello! No news is good news!!!! Things are great here with Alyssa. She has had no issues since being released from the hospital and her labs are back to baseline!!! She is feeling great, going to school, dance, baton, and tonight she has a performance with her baton group at the middle school girl's basketball game. Austin is even excited about this!!! Austin is doing great too - he had a basketball game on Monday and made 3 shots. He is growing and doing very well in school.

Alyssa is still HAMA positive. We thought we would be headed to NY next week, but we will pull blood again in a month and hopefully it will be negative. She is due for scans again at the beginning of March so hopefully we can make 1 trip to NY for scans and antibodies.

On a sad note, last week Doddridge County lost a wonderful lady to cancer. Cathy McClain will be missed by many as she did so much for the community, American Cancer Society, and friends and family. She was employed at the Doddridge Co. Health department and even came to our home to give us flu shots so we didn't have to expose ourselves and Alyssa to unnecessary germs. Three is a scholarship fund being started to send a student to nursing school in her honor. Please review the attached document and make a donation in her honor.

I'll be in touch when there is something new to report!
Paula

Cathy McClain Nursing Scholarship.doc

Cathy McClain BPH.doc

January 22, 2008

Hello all - things are good here! Alyssa has felt great since getting home from the hospital on Friday. She went to dance class for 3 hours yesterday learning a new routine and did very well. Today she is off to school and then to her ballet class afterward. I love watching her do things that she enjoys and praise God that He has given her (us) the opportunity!!!
Not much else to report - I just wanted to give you an update to let you know things are on the upswing!
Below is a note from Grace's parents. They have not written since Grace earned her wings a few months ago, and though you will feel their pain through this note, I believe it is worth reading as it makes one appreciate what we have.

With hope,
Paula


Dear Friends,

This site has been silent for a while now. It pales in comparison to the deafening silence that now fills our home...like a concert when the music stops, we long for an encore. The day that Grace Lindsay died, so much of what was musical and beautiful in our lives ceased to exist. The "music" died. For so long Crystal and I wished only that she would be at peace...be through suffering. We were sure that we were stronger than her and that we would be "okay" if she were healed in the arms of God. Now I am not so sure. I think she was the stronger one. I think this because now we are here without her...weak, frail, and longing for healing. We would gladly give all that we have and all that we are to see her fighting again, inspiring and giving hope to so many, including us. We want hope back, but we really want her back.

It is ridiculous, of course, to ask for that. Not only because it is impossible, but because, if possible, our princess would not ever want to leave a place of such peace and perfection to return to an earth filled with pain and sorrow....even to be with us. So, we don't ask for that. We simply ask for peace and wisdom, neither of which has come to us from a burning bush or lightning bolt yet....but we are still hoping.

We must share, though, that we have found peace in the fact that we are confident God does not give kids cancer. We do not believe that Grace, or Lilly, or Chloe, or Sydney, or Marissa, or Codey, or Kai, or Jack, or Shannon, or Gustavo, or Max, or Kieran, or Zach, or Cooper, or Elliot, or Leo, or Paris are "given" cancer. We do not believe that their pain and suffering is all part of some celestial chess match...that God afflicts these beautiful, strong children with a devastating disease, that tortures them and tears apart their family, to accomplish some greater goal. We believe that God weeps when these random cells choose death over life and pain over peace, just as he weeps when unstable people murder innocent families, or mistreated dogs maul grandmothers. We know in our hearts that God does not make those terrible things happen. He is a loving God whose heart aches with us as we suffer the pain that goes along with the freedom to choose. The freedom to choose right from wrong, to love or to turn our backs, to praise or to persecute. The freedom to love and worship Him, not because we have to, but because we want to.

Does this mean that, because it isnt part of God’s master plan, no good can come from Grace's death? Absolutely not. In fact, that is where we see God. We see him in the hearts, minds and souls of people who choose to open their doors, arms, and wallets to help these kids. We see his hand in the dedication of parents who choose to try and conquer a disease that has taken the life of their baby. We choose, and we are committed, to make something good come from the death of our daughter, because we refuse to let her die for nothing… and we long to see a bright light, where it is now dark.

We pray for peace for you, our friends entrenched in battle. We dont write this because we wish to preach. We just dont want you to feel distant from Him … we have been there. Know that God loves you, he weeps with you, and he certainly did not do this to your children.

Truly,

The Oughtons

January 17, 2008

Things are going well here. Alyssa is feeling great and the kidney labs are back to "her" normal. Many have asked what RSV is, so I have included a link. RSV is a respiratory virus and it is most likely what caused the pneumonia. We should still be coming home tomorrow as long as things go well with the reintroduction of her blood pressure meds.

Respiratory Syncytial Virus

Paula

January 16, 2008

Things are going okay. Her labs are almost to "her" normal range. Tomorrow they will probably be there. Her pressures are still on the low side of normal even without giving her BP meds. The infection in her lungs is expected to be the cause of that. We are still in the PICU, but only b/c there are no rooms on the regular peds floor. She is feeling pretty good and drinking, but doesn't have much of an appetite yet.

Her nurse just came in and told me that she tested positive for RSV, so now we have something else in the mix:( They won't change any meds and it will hopefully not keep her here any longer. I have to wear a gown and gloves in the room with her at all times and she now has to be in isolaton, so at least we will be in a private room for this stay.

I will update again later if there is anything to report.

Paula

January 15, 2008

Well, the cough turned in to much more! This cough started on Tuesday night and continued through Friday with no other signs of being sic - she acted just fine and even went to school. It was not a continuous cough and otc meds were keeping it under control. Saturday, however, she started to feel bad. All she wanted to do was lay on the couch, but still had no other symptoms until around noon when she developed a 99 degree fever. It only went up a little (less than 100.4) and I immediatly called her pediatrician. We agreed that she had a cold and that is what was cousing this, so unless the fever went up, I would just let her rest and give her Tylenol. She had big breaks between the Tylenol and the fevers weren't going out of the 99-100 range, so I wan't overly concerned other than she would not eat and was drinking less. Then Sunday came. She had Tylenol when she went to bed, but the temp was normal through the night, in! the morning, and stayed that way until 3:30p.m. She was still acting the same - sleeping, not wanting to eat, and drinking less than usual. I called the doc again. She called in an antibiotic an I started it Sunday night. After her bath that evening (the only thing she got off the couch for all day) she felt much better - played with Austin some and was more talkative. She slept well and I called the pediatrician in the morning to make an appointment. She was acting much better, but still not eating. I only gave her the 1 dose of Tylenol at 4 p.m. Sunday and the fever remained normal until we got to the doctor's at 1:00. They took her blood pressure - it was VERY low. Her oxygen saturation was very low as well (92). The doctor said her chest was full of junk and did a breathing treatment. The oxygen only went up to 94. She admitted her to UHC, saying she had bronchitis, pnemonia or a odd strain of the flu go! ing around.

We got to UHC and she was doing fine. We got blood work done and they were hooking her up to fluids when Sam got there to releive me around 5:00. I had to run home to get things for us to stay and get Austin. Her doc in NY called me and was VERY concerned b/c of the BP and oxygen. He was asking of she was on O2 or in ICU. He got in touch with the pediatrician and she assured him that everything was under control and she was communicating with Alyssa's kidney doctor as well, making sure the antibiotics being used were kidney friendly.

At 7:30 I was ready to leave home and head back to the hospital. Sam calls me and says "change of plans". Her kidney labs came back and they are taking her by ambulance to WVU and putting her in the PICU.

Okay - so now I'm really freaked out! I get to the hospital around 8:00 and she looks HORRIBLE! I just left there at 5:00 and she was good! A fever was coming on and she got the shakes really bad. The fever went to 102.4 and the gave her Tylenol. It started down and thankfully has never returned. We left in the ambulance at 10:30 (roads were solid ice) and got to WVU around midnight. About half an hour after getting here, her kidney doctor comes in (Dr. Onder is awesome! He is one of the most dedicated doctors that I have ever encountered). By this time Alyssa starts to perk up and even starts playing and eating. They ran the labs again and they were already dramatically lower! Morning labs again showed more of a decrease and he believes there has been no damage!

Her chest x-ray confirmed Pnemonia and she also has an ear infection. No word on cultures, so that is a good thing - we are all pretty sure it is not a line infection, but the cultures will tell that story.

Today she is really tired b/c we were up so late. She is sleeping now and will be moved to the regular peds floor as soon as a bed is available. We should be here 4-5 days.

Please keep her in prayer that the kidney will recover just fine and this will not cause any set backs for it. I will update again soon - I cann't use my laptop in the PICU, but will be able to when we get moved to a regular room.

Thanks for your continued support for our family!
Paula

January 3, 2008

I just wanted to pass on to you Rob's update on Zach last night. Please. please add Zach and his family to your prayer chains! To follow Zach's progress, you can go to: www.caringbridge.org/visit/zacharycharlebois

You can sign up to get email notices when Rob updates.

With hope,
Paula

Rob wrote:
Day three of chemo and radiation. He was miserable today! He put on quite a show in the playroom! We forced him to take the Temozolomide today by squirting it down his throat. He can tell when I am trying to have him eat something that is spiked with medicine after the many rounds of Accutane. The HAMA test was done today and I did not get a call so he must not be HAMA positive. That is still important because he will resume the antibody treatments if he gets through this setback. I had a sobering conversation with Dr. Modak. I thought the lack of surgery was a positive but he said the team was not comfortable with the situation. The neurosurgeon thought the risk was too great for surgery. Dr. Modak said that past success dealing with NB in the brain began with surgery to remove the tumors. Scans will be done soon to determine if the chemo and radiation are enough to kill the cancer.

January 2, 2008

HAMA positive again! We will draw blood in another month and hopefully she will be negative by then.

When humanized 3F8 antibodies are available, this will no longer be an issue!!!! I will begin fundraising efforts again soon, but for now, I need a bit of a break - the cookies and candles on top of the holidays wore me out! However, if anyone wants to make a donation, even a monthly one, you may go to www.bandofparents.org and click on the link, make a donation. It is very simple!

I hope you are all off to a great NEW year!

Update on Zach...
Things are going as planned - he started Chemo and radiation. It is quite rough b/c he has to be sedated for the radiation and does not do well coming out of it like Alyssa. Please keep him and his family in your prayers!

Take care,
Paula

December 22, 2007

Yes - I am writing with all good news!!!! We have much to be thankful for this holiday season!

First of all, Alyssa and Austin are doing great and quite anxious for Santa. We are expecting company all weekend and looking forward to visiting with friends and family.

I received an email from the president of the Band of Parents. He sent a copy of a letter from Dr. Cheung (the one who developed the mouse and NEW humanized antibodies). I copied the letter for you to read!

Dear Mr. Lindberg:

I want to share some good news regarding the 3F8 initiative. We have obtained a commitment from a biotechnology company that provides both mission and experience to develop the 3F8 mouse antibody program. With their expertise and input, I expect the 3F8 chimerization and 3F8 humanization to rapidly move forward. This development is a direct result of the inspiration provided by all of the families and children across the nation in our care. We thank you for your passion, determination, and energizing efforts that uniquely helped to accelerate this initiative and make this possible.

You have collectively and literally moved "mountains" and have given many something to be thankful for over the holidays. As we bring in the year 2008, your "magic" has only just begun. Please share this note with all who have helped bring us to this step. I will be providing a more detailed update in an evening meeting planned for January 24, 2008.

On behalf of all of us at MSKCC, I wish you all a peaceful and loving holiday season.

Please post
Thanks

Dr. Cheung


Also, I received a note from Rob, Zach's dad and although relapse is horrible, there is much hope for Zach! Rob's update is below.

The treatment plan is taking shape. Zachary has his radiation simulation today at 1:00 and they will also tattoo the spots they want to radiate. We will return home afterwards and "enjoy" Christmas with the family. We will return the day after Christmas and begin the radiation treatment which will be every week day for three and a half weeks. At some point during the radiation he will start chemo, irinotecan and temador. The radiologist warned me he would lose all of his hair again and there was a possibility it would never grow back or could come back very thin. At some point he will be scanned again to ensure the treatment is working. He will eventually begin the 8H9 antibody treatment which has had great success. If all goes well, Zach will not have to face surgery! I have found that dealing with this relapse emotionally has been more difficult than Zach's initial diagnosis! He was in pain and had stopped walking last December and treatment was a welcomed because he needed relief. This is much more difficult because he appeared to be normal and in good health.

Thank you all for your continued support for Alyssa and our family! May you all have a blessed holiday season and a healthy 2008!

With hope,
The Weekley's

Austin motorcycle outfit

Dance Prof 1

Dance Prof 2

MVC-020S

December 19, 2007

Hello....I was just sitting here reading my emails reflecting on the day and past weeks. I was thinking how wonderful things are going. The band of parents has successfully completed the cookie fundraiser and we have raised over 1.2 million dollars. Sloan has agreed to move forward with the antibody production. And most of all we will be home with family and able to enjoy Christmas.

And then I opened an email from one of our very best friends at Sloan. Zach and his dad, Rob do things with Sam, Alyssa, and I all the time when we are in NY together. We go to dinner, to the park, we sit for hours at the hospital during treatments or waiting to be seen by doctors. Below is a copy of what Rob wrote today and a link to Zach's site. Please keep them in you prayers!!! My heart is broken. This disease is such a relentless monster!

From: www.caringbridge.org/visit/zacharycharlebois
Our worst fears were realized today as I was informed that Zachary has relapsed in the brain. There are three tumors and possibly a fourth. I hope to find out what the treatment plan is tomorrow.

I am sorry to always be sending sad emails! On a HAPPY note, Alyssa is doing great and she and Austin are sure ready for Santa!

I promise the next email will be uplifting:)

With hope,
Paula

December 17, 2007

makes me feel very blessed to be having this one! For the past 2 years we had to have Christmas early because of her surgeries. We were filled with fear of returning home without our angel and facing December 25th and the rest of our life without her. Thanks to our wonderful God above and for all of you who not only prayed, but begged him to watch over Alyssa and our family, we are here again this year as a complete family ready to celebrate Jesus's birthday!

Alyssa is doing very well - she continues dance, pom, and baton classes and enjoys school. Her teachers report that she is "not a bit shy" and entertains the class on a regular basis. Austin is doing very well in school this year and is again playing basketball. He is big enough this year to make baskets and really enjoys it. He has come out of his shell so much and is really growing up.

Yesterday Alyssa had a doctor's appointment in Morgantown with her kidney specialist. It was just a check up. Her blood pressure has been good, but a bit on the low side. She complains of being tired from time to time, so he reduced her dosage of blood pressure medicine. I then asked the dreaded question.....what should we expect of this kidney in the future? He informed me that he classifies Alyssa to be in stage 3 chronic renal failure. This is a scale of 1 to 5. 1 being perfect and 5 needing dialysis or transplant. He is VERY pleased with how she is doing right now, but estimates her kidney to function for 5-10 years. At this point 1 of 2 things will happen. Best case scenario (and what we will hope and pray for) is that she will be in remission still (she has to be tumor free for 3-5 years) and can receive a transplant. Most likely Sam or I will be able to donate to her and she will get whichever is the best match. The best news with this is that kidney transplants now days are 100% according to her doctor. She would have it done in Pittsburgh with her WVU doctor working with them. If a transplant is not possible, then she will have to receive dialysis 3-4 days a week and most likely it will not be the kind that you do at home. She would have to go to WVU for this - they are the closest for pediatric dialysis.

I know this seems like such horrible news to hear, especially this time of year, but we are not taking it as that! We are taking this as GOOD news!

1 - Her doctor thinks the kidney will be strong enough to last at least 5 years giving us the time frame needed for transplant if GOD willing she remains in remission.
2 - We have 2 kidneys that most likely will be a match for her.
3 - This is not life threatening if she cannot have the transplant - there is always dialysis.

For now we have the first bridge to cross and that is what we will focus on. Keeping her in remission. We will worry about kidney issues when they arise. Today we are thankful to have a tumor free little girl living a normal life.

And below is the best Christmas present that I could receive this year! For all of you who have donated to the band of Parents, bought or sold candles, or purchased cookies, thank you and YOU helped make this happen! GOD BLESS YOU ALL!!!

I will be sending you all an email Christmas card very soon with those much requested pictures!!!!

Until then, have a safe and happy holiday season!
Paula

Letter from:
Nina J. Pickett, M.P.S.
Administrator
Department of Pediatrics
Memorial Sloan-Kettering Cancer Center

In response to your recent requests for updates and a time for Dr. Cheung to meet as a group, I am sending this brief summary. We are seeking to arrange a meeting for early to mid-January to provide a more comprehensive update and plan, and we will send a potential date and time out to you, once identified. Please share this email with other involved parents to keep all informed.

In the meantime, I an happy to advise you that MSKCC has made the commitment to move forward with the project to humanize the 3f8 antibody, as dollars to support this work are identified. As a result, Dr. Cheung has been able to commence, and is authorized to complete, negotiations with outside companies to perform all or aspects of the work to engineer and produce the product, which is not contingent on having funds in hand. He is quite enthusiastic about two outside firms in particular currently interested in developing the antibody, and talks continue.

Your fund-raising efforts are to be applauded. We estimate over $1 million dollars has been raised to date for this effort from The Loneliest Road campaign, a pledge of intent from an outside, private foundation, and the Band of Parents' cookie sales and on-line auction. No funds from any of these entities have been received here as yet, but a "Neuroblastoma Initiatives" Fund has been segregated here, and any giving in support of neuroblastoma research, not otherwise stipulated, is being directed to this entity, including MSKCC's on-line donation capability. A small amount has been received to date (< $100,000). We encourage interested donors to make these contributions directly. Their gifts may be made payable to 'Memorial Sloan-Kettering Cancer Center', with a cover letter indicating the gift is in support of the antibody initiative, and the funds will be credited accordingly. It is not known what this endeavor will ultimately cost, but we are committed to bringing this through manufacturing to the lab and ultimately through clinical trials and production for all who will benefit from its use.

Media requests have been facilitated and potential donors have been responded to by me or Zeena Abdulahad, our Development Officer, as you all have directed them to us. The BoP cookies are on sale in MSKCC's gift shop today.

Dr. Cheung will be prepared to fill you all in at the January meeting on where his negotiations stand and his projections for next steps and timeframes. I reiterate that MSKCC is committed to this project and that dollars in hand are in no way driving the timetable or our ability to finalize and carry through on contractual arrangements. We are able to do this as a result of your demonstrated results. With the continuing combined energy, efforts, and commitment of all of you and all those on Dr. Cheung's team, we look forward to ongoing successes as we move forward together.

With our gratitude to all of you, your loved ones, and all who have responded on behalf of your precious children, we at Memorial Sloan-Kettering send our very best wishes for a happy holiday season and new beginnings in the coming year.

Sincerely,
Nina

December 9, 2007

Well, I finally got those pictures! The kids have had so much fun playing in the snow the past days! Alyssa had her first dance performance tonight and she did AWESOME! I was overcome by a down pour of tears! There are many days when I wondered if she would ever get to take a dance class, go to school, enjoy sledding, and ever have "normal" again. God has blessed us with all of these things and I am forever grateful! He has heard all of our prayers along the way and the gift he has given is very overwhelming!! Thank you God, Thank you friends and family for all the support and prayers!

Enjoy the pictures and please read the rest of the email - it may not be pleasant, but it is the truth!!!
Paula

I have been humbled by the many friends and friends of friends who have contributed to our fundraising effort! If you bought or sold candles or cookies, thank you from the bottom of my and hundred's of other hearts! You have been instrumental in making this treatment (that ALYSSA could soon need) a reality! Yes, I said reality! The doctors at Sloan have begun the legal proceedings for producing this treatment!!!! If all goes as planned and we continue to raise the money at the pace that we are, this treatment will start being used in our kids in less than a year!!!

If you have not yet donated (or want to donate more) I urge you to go to www.bandofparents.org and give what you can. You can also send me a check made out to Band of Parents, Inc. and I will forward it on for you! My address is HC 68 Box 9B-1, West Union, WV 26456.

I know we are all busy now, but let's all remember what this wonderful season is about!!! How about a gift of life????

To put this HORRIBLE disease in perspective, read the poem below. This is the life that we have lived for over 2 years. Fortunately, not ALL (most, but not all) of this happened with us, but we have witnessed other families go through EVERY BIT of this nightmare!!

Please give what you can.
God Bless,
Paula

I hope you never have to hear the words, 'Your child has cancer.'
I hope you never have to hear, 'the prognosis is not good'.
I hope you never have to prepare to undergo radiation or chemotherapy,
have a port surgically inserted into their chest,
be connected to IV poles.
Look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'
I hope you never have to hold your child as they vomit green bile,
I hope you never have to feed them ice chips for lunch,
I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they,
lose their hair,
become skeletal,
swell up from steroids,
develop severe acne,
become barely or unable to walk or move,
and look at you with hope in their eyes and say,
'It's going to be okay, Mommy.'

I hope you never have to stay in the hospital for weeks, months or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'there is nothing more we can do.'

I hope you never have to watch a family wandering aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to a table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck by you and hear them say, 'Thank God, that is over with,' ...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'. While living in mind-numbing fear that any one of these tests could result in hearing the dreaded words...

'The cancer has returned' or 'the tumor is growing'.

And your friends become even fewer.

I hope you never have to experience any of these things,...Because...only

then... Will you understand....

Written by: Carol Baan

December 5, 2007

Hello all - I hope you are staying warm and are safe at home off the roads! The kids had the day home and played so hard in the snow! I even went down the hill a couple of times on the snow disk. Alyssa kept saying "mommie's funny" and the horses were even looking! Alyssa had dance rehearsal this evening for her big winter performance this weekend, but of course it was canceled.

I haven't heard any more on her pending tests, but will let you know when I do.

Tomorrow is Austin's birthday! He will be eight!

I'm sure school will be canceled again tomorrow, so I will try to get some pictures of the kids in the snow for you!

Also. I wanted to give some special recognition and an update on what we have raised from the cookie and candle fundraisers.v Take care and keep warm tonight!
With hope,
Paula

As of right now I have sold 32 dozen cookies!!
That's $960 for the Band of Parents with 100% profit!!
Here is a list of supporters...

• Linda Meier
• Dee Weekley
• Nancy Wetzel
• Pat Harman
• Ramie Reed
• Deb Tenda
• Laurie Little
• Linda Cavins
• Linda Collins
• Julia Foley
• Celeita Krammer
• Monica Reece
• Suzanne Warsinsky
• Crystal McCoy
• Christie Jarrell-Haddox
• Sharon Glover
• Barb Hartley
• Olivia Adams
• Tammy Kreyenbuhl
• Leslie Underwood
• Pam Moore
• Terri Newhouse
• Barbara Adrian
• Sheila McCucheon

• Pam Travis
• Dee Weekley
• Nancy Wetzel
• Cheryl Hollobaugh
• Barb Hartley
• Terri Newhouse
• Deb Tenda
• Julia Foley
• Melissa Minigh
• Tina Yeager
• Sharon Glover
• Michelle Mouser
• Sue Britton
• Christie Jarrell-Haddox

December 4, 2007

Hello! I just spoke with Alyssa's doctor and he said the MRI looks good. The MRI of her head reveled a cyst, but it is NOT disease related and he thinks it is NOTHING to be concerned about. He said many kids have these, but we will do another MRI on her head in 3 months to make sure there is no growth. It's still hard not to worry about a cyst in your kids HEAD! Her MIBG scan still shows that suspicious area, but it is still believed to be a piece of her bowel or fluid uptake with the dye - NOT TUMOR. 2 Bone marrow aspirates came back negative and 2 more plus the biopsy are still pending - should know in a couple of days.

Thank you for your prayers for these results and PLEASE pray that the cyst is NOTHING to EVER worry about!

With hope,
Paula


COOKIE UPDATE... I have had 23 dozen ordered!!! 25 means free shipping. I will be sending the order by tomorrow, so PLEASE order a dozen of cookies!!!

Also, I have a candle order going in tonight if you want to add an order!

One more thing.... Many have expressed the desire to just donate money to the cause. You can do this simply by going to www.bandofparents.org and entering your cc number or you can send a check directly to them - the address should be on the site, but if not, let me know and I will give it to you. Please donate what you can to help!

Here's some more info about the band of Parents and why we are nagging you so much to order cookies, candles, shop at igive, and for any DONATION you can give. I am sorry to be hounding you all, but this is so very important!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

An Opportunity to Give a Holiday Gift That Has Meaning!!

Please read and then send to your email list!

Our holiday fundraiser is an amazing volunteer effort!

What would you do if you heard the words that your child has a rare form of cancer?

Go to www.cookiesforkidscancer.org and ship cookies to all your clients, friends, family. 250 volunteers put this production company together in a month to help our cause! Award winning Cookbook author Sally Sampson’s recipes are being prepared and shipped to your gift list with a card enclosed letting your special ones know their gift was one that contributed to a cause that truly will make a difference!

Our Story

We are parents who heard those words—our children have been diagnosed with stage IV neuroblastoma, a cancer that typically strikes before age five and kills 70 percent of those diagnosed. Our children undergo intense multi-modal treatment regimen in hopes of being one of the lucky ones who survive. The long term effects of those that survive are not easy either, but what is the choice? We as parents are passionate to bring a new drug that holds high hope and promise to Memorial Sloan Kettering Cancer Center in New York City in the next year. This is where Alyssa’s team of four doctors work everyday to find hope for families like us.

When we learned our daughter Alyssa had stage IV neuroblastoma, we had no choice but to subject her to harsh, painful, devastating treatment. She is outside the age range of “typical diagnosis� We had to find an outside the ordinary treatment for her. She is now in remission, but anyday relapse could become a reality. If this were to happen, then she would need a new therapy like the one we are desperately trying to raise the funds for.

What would you do if you were told you the price of saving your child was just too high?

We have been told that because Alyssa is one of only about 12,500 children diagnosed with cancer in the U.S. annually, research and development into drugs to fight his disease is not profitable for drug companies. Government funding is also scarce: the 12 different forms of children’s cancers combined receive only 3 percent of the National Cancer Institute’s funding; a tiny fraction of that amount goes to neuroblastoma. Foundations like the American Cancer Society don’t focus on pediatric cancer and don’t fund neuroblastoma research.

What would you do? By joining with other families we’ve found strength and hope.

The Band of Parents is a group of ordinary parents bound together by extraordinary circumstances. Our sole aim is to raise money to fund a new antibody at Memorial Sloan-Kettering Cancer Center. The team of doctors know they can design new, less toxic treatments that they believe can make stage IV neuroblastoma a chronic, treatable condition, and eventually provide a cure. Time is running out for many of our children—3 million dollars stands between them and the chance to have a future.. Please help us raise that money, for our children, and for those not yet diagnosed. To find out more and to donate and to order cookies go to www.bandofparents.org or www.cookiesforkidscancer.org

December 2, 2007

I am so sorry that I have not updated since leaving for NYC on Wednesday! As always, NO NEWS IS GOOD NEWS! We had the most hectic trip you could EVER imagine and I could have never done this one without Sam's help!!!

The day before we left, I called Corporate Angels to see if by chance they could get us to NY and they did! We left Pittsburgh at 6:00 a.m. and walked into the RMH at 8:00!

First of all, the only news that I have concerning her scans is that her MIBG scan looks great! This scan is used to detect neuroblastoma cells by injecting a radioactive material into her the day prior tot he scan. It takes over an hour to scan her (sort of like an MRI - she can't move and the camera is less than an inch of her nose) and she does this WITHOUT sedation! She is my hero!

Originally we were to be at the hospital Wednesday and Thursday for MIBG, CT and Bone Marrow aspirates. We ended up being there Friday too!

She was scheduled to have a CT scan as well, but her kidney labs are too elevated to inject the necessary dye for the CT, so her doctor said we will do MRI's from now on.

He suggested that we try the MRI without sedation since she does fine for every other scan (and 17 rounds of radiation at 2 years of age). Immediately following her MIBG scan we went into MRI. For those of you who have ever had one, you know that it is very loud and you are in a tube. They let me stay in the room with her and gave both of us earplugs. She didn't move or say a word for the first part of the scan which was about 25 minutes. Then the nurses came in to inject a dye and I went to her side to talk to her. At this point she broke down and started crying and wanted me to hold her. She was so scared and there was no getting the scan finished. I was so proud of her for making it through 25 minutes being frightened PLUS it is now nearly 3:00 and she has had nothing to eat since midnight due to sedation for the bone marrows- what an amazing 4 year old!!!! We then scheduled the remaining scan and her bone marrows for the next day.

Friday went smooth, but it was a bit nerve racking! She was sedated for over 2 hours for the MRI and bone marrows. Cooperate Angels got us another flight home, but we had to be picked up at the Ronald House at 2:45! Coming out of sedation can sometimes be a nightmare for her, but this time she did GREAT! We made it back to the house and had 50 minutes to spare! We met a lady who is battling ovarian cancer on our return flight and even had J. LO. and Marc Anthony walk right in front of us in the airport! J. LO. looked right at Sam - he will never be the same! LOL!

Also while in NY, the Ronald McDonald house took us to a party being held in an office building overlooking the Rockefeller Center tree for the lighting ceremony. We were right in front of the tree and over top Nick Lache's head (hosting the TV broadcast). We saw Carrie Underwood, Taylor Swift, and Celine D'eone (sp?) sing! Pretty neat being among celebrities, but being in the presence of our own little angel is a blessing we have each day!

We should have MRI results on Monday and bone marrows by the end of the week. There should be no surprises - the MIBG being clean tells us A LOT and her doctor expects nothing in the marrow!
Also, while we were there, they drew for HAMA again - I will have those results on Wednesday and we may be headed to NY on the week of the 10th. If she is still positive, we will then probably be going in Jan. for her final treatment as her HAMA level is getting really close!

I will attach some pics of The Rockefeller Tree, Nick Lache, Taylor Swift, and the skating rink. Sorry - the only picture I got of Alyssa was damaged:(

Thank you all for your prayers for these scans - we will be able to enjoy Christmas even more now!
Paula

November 26, 2007

If you would like to order the gourmet cookies and pick them up at my house to avoid shipping, please let me know! We get free shipping on orders of 25 doz.

My goal is to sell 25 dozen and I am hoping you will help make this goal!

Please realize that, although $30 for a dozen of cookies seems VERY expensive, the profit for our cause (humanizing the mouse antibody that Alyssa now receives) is nearly 100%! Think of this as a $30 donation with a dozen of cookies for you to enjoy as a thank you!

Please ask your friends and family to purchase a dozen as well!

www.bandofparents.org for more info and cookies available

Orders need to be in ASAP!

Thanks,
Paula

November 21, 2007

Well, Alyssa is HAMA positive once again. One good thing is that we will now be able to fly to and from NY next week for her scans rather than renting a car to get there on this horrible travel weekend. Sam will go with us - I will never do scans again without him! We will leave Wednesday morning and be back Saturday afternoon.

She has scans Wednesday and Thursday. Please, please pray for unchanged scans! We are entering a very scary time (not that everything else wasn't scary), but prayers have gotten us this far and I have to believe that God has saved her from this horrible disease!

Thank you all for everything and mostly for the prayers - we need them very much right now. It is going to be hard seeing some of the families - many, like us, are mourning the loss of some dear children and the house, though it is wonderful, can be a painful reminder of those angels who left us too soon!

November 19, 2007

It's been a good weekend here - we stayed in Saturday and caught up around home. The kids tore the house up while I cleaned it up - I think they won!

I will be talking to Alyssa's doctor Monday concerning her upcoming scans. They are scheduled for the week of Dec. 17th, but I realized last night that they are due next week! So it looks like Sam and I are going to be going to NY next Sat. or Sun. We would have to take a loan out to get a flight that weekend, so we are exploring other travel options and will know much more tomorrow. Please pray that her HAMA test comes back negative Tuesday and we can do antibodies and scans next week eliminating another trip to NY the week prior to Christmas. I'll be in touch!

I sent out info in a separate email about the cookie fundraiser. www.cookiesforkidscancer.org. Please read that and forward it on to everyone you know! The BOP goal is for each member to get 100 boxes of cookies sold! That would mean $3000 per member. There are over 100 members, so if everyone met their goal, it would mean more than $30,000. The need for these antibodies is very urgent. Please consider this donation while getting great cookies or sending them to someone for Christmas and having one (or more) gift/s bought/done.

I am also going to forward some other fundraisers that are going on for this same cause. Or if you would just like to make a direct donation, you can do that on www.bandofparents.org

Now for the sad news:
Sarah Boss passed away on Sunday morning. Her parents's post is below. Please keep them in your prayers.I'll be in touch soon!

Thanks!!!
Paula


Sunday, November 18th:
I Am once again so so sorry to be writing this update. At 10:30am this morning Sarah passed away very peacefully in the comfort of her own home with her Mom and Dad at home with her. I can tell you that I have not seen her look so peaceful and pain free for longer than I can remember, she is such a beautiful girl and she has taught me so much in the past year. I am absolutely sure that Sarah's last commute to heaven was certainly her fastest and surely the easiest one she has had to make since her terrible ordeal had began.

Sarah, We miss you more than words can express and we are so proud of you. You are tougher than anyone could have ever imagined and have shined enough light on to others to light up a city.

We love you so much Sarah,
Mom and Dad.


Hello all -- your help is needed! My friends and I in the "band of parents" -- ie almost 100 families of children diagnosed with neuroblastoma -- are selling gourmet cookies for the holidays, with proceeds to be devoted to developing a new treatment for neuroblastoma at Memorial Sloan-Kettering Cancer Center. Promising new research indicates that this treatment could help save the almost 70% of children who do not survive stage iv neuroblastoma. (I know -- it's hard to believe NO funds are available for this much needed treatment and that parents are selling cookies to save their children.)

The cookies are from the wonderful new cookbook Cookies by Sally Sampson. Because virtually everything including ingredients and culinary expertise has been donated, and because the 96,000 cookies are being baked by over 200 volunteers, nearly 100% of proceeds will go to Sloan Kettering and benefit children with neuroblastoma. These very special, all natural gourmet cookies donÂ’t just taste great -- they give children with cancer a chance for a cure, and precious hope for holidays to come.

www.cookiesforkidscancer.org

Please order your holiday cookies now! And please send the attached flyer to everyone you know!!

please order early. The sooner we know what our commitments are, the better we’ll be able to plan out our baking schedule. And, we have a limited number of cookies…so once they run out…we’re out. Remember…the bulk of baking happens 12/1 – 9. We need a steady stream of orders so that we