Celebration

It's been three years almost exactly since our precious daughter was diagnosed with stage 4 High Risk MYCN Amplified Neuroblastoma, and by the grace of God successfully journeyed through surgery to remove her primary tumor, 5 rounds of Chemotherapy, 12 rounds of radiation, a stem cell transplant and 6 months of immunotherapy (CH 14.18) to come out at the end " No evidence of Disease " and has remained in remission for 1 year and 10 months. Through the highs and lows of her journey God has remained faithful and we stand here three years later Testifying of his goodness to us through the good and the bad.  He held us.  We did not know how our journey would end and yet He taught us he was enough!  We still do not know how our journey will end as she still has three years of scans and watching as relapse is common with her aggressive form of Cancer.  However our hope is in Him.  In 3 days it will be three years to the day that our lives were forever changed and yet here we stand celebrating a huge milestone!  Thank you , Jesus.  Halie lost ALL of her immunizations when she had her stem- cell transplant and for an immune compromised child that is a serious issue.  She had to start all over again and so for the past year and a half she has every month went through catching up on 6 years of shots! On top of extensive dental work and scans every three months, with an array of other post treatment appointments ( have I mentioned my daughter is Amazing ) Well,  Thursday she had her last set of "catch up shots" and Friday had her last catch up dental work (from damage done because of chemo) :))))  It is likely she will have many more battles with side effects in the future but for today we are celebrating!!!!These may not seem like huge Milestones to most for our precious girl these are HUGE!!! 1 less dr. visit, 1 less ouchie! We go back to Texas Children's Hospital in July for her 2 year scans and hearing test but until then we have NO doctor appointments on the calendar for the first time in three years :)  for 2 months.  So today I want to praise God for his faithfulness to our family through the darkest of days and the mountain tops of days! I hope that as we are encouraged witnessing his faithfulness and love to our family (even when we could not always see it, my dear friends who are in the midst of suffering right now) you would be encouraged & would be reminded of his goodness and Mercy.   Thank you, Lord!!!
 Here is a post I wrote 6 months after halie was diagnosed and my prayer is that it would encourage those who are in the fight!

November 2, 2010

A note from Mommy!

My heart is too overwhelmed to say much today.  Halie is doing well  and getting stronger everyday.  Watching her battle for her life these past 6 months has taught me more about my Savior than any sermon I have ever listened to or book that I have ever read.  He is more trustworthy than I ever imagined and kinder than my mind can comprehend.  That may sound strange in the midst of this particular Valley but psalm 23 rings true in my heart and I rest in the knowledge that He alone is our shepherd and our only hope.    I have a poem and a song I want to share with you all today but before I do I want to leave you with a verse penned by John Piper.  I read in my quiet time today about his Sovereign Grace and wanted to share this one thought...."Not grace to bar what is not bliss, nor flight from all distress, but this: The grace that orders our trouble and pain, And then, in darkness, is there to sustain...."  May He sustain you in your journey......


In honor of our warrior

The Warrior by Terra (Leukemia survivor) written when she was in 8th grade following her diagnosis

The Warrior is a Child

Gazing in the mirror
I see a warrior's face.
Fully clothed in armor,
No fear and no disgrace.

A tear it never offers,
A smile it always gives,
No sadness does it show,
But what life it lives.

Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.

Each day you see this person,
And think that they're so brave,
Each day you see us laughing,
The tears are ours to save.

So when you see our armor,
And think we're calm and mild,
Remember this one thing,
The warrior is a child.

- Terra Phillips

 Halie at her 3rd Birthday just 1 month before diagnosis

 

Halie Nicole 2 weeks after her 6th Birthday!!!!!!!

 

 

 

 

 

This warrior is a child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child

Happy Birthday, Beautiful!!!

I cannot believe our baby girl is 6 years old today!  Feeling overwhelmed and very blest for many reasons today!  I think the biggest emotion is Thankful!  Thankful that today we will celebrate 6 precious years with our Amazing daughter!  Thank you , Lord for the gift of our children!!!!

Valentine's Day Bake Sale & quick update!!!

Hello and Happy New Year!

     So, Miss Halie is doing great!  I realized today that she is 1 and a half years NO EVIDENCE of DISEASE!   I am so thankful every day for the time we have been given with our sweet girl!  I was reading this morning that every 16 hours a child with Neuroblastoma dies and I  have a renewed since of determination to be used in any way God allows to be a part of finding a cure!!!!!  We personally benefited so much from research that was started over 5 years ago with the Monoclonal Antibody & we will continue in the fight against childhood Cancer!  Please join us either through baking or monetary gifts to the CNCF as we raise money for research for these precious kiddos!  Above all else please join us in prayer for the families that are still in the fight, for the families like us who are NED but still scanning & for the precious families that are grieving the loss of their children from this horrible disease!!!!  We know and give ALL glory and praise to God who is our Great Physician and Healer knowing that he uses the Doctors and Research for His Glory and purposes!  We are thankful for the Doctors and Nurses and who fight for our kids every day!!!!

     Update on the family....  We have brought Chloe, Kyle and Halie home to be home schooled for right now.  Halie came down with Pneumonia over the holidays and had to be on her second course of antibiotics in 6 months so Jason and I with her Doctor decided it was time to take her out of school.  Her sweet body endured so much during treatment and although God has been so gracious protecting her from many of the harsh side effects of chemo we needed to be wise stewards of her health and bring her home.  She still cannot handle all the sickness like a "normal" child.  She is still healing.  We decided to bring all the kids in elementary home to avoid bringing home additional illness and putting her at risk.  Aleks is still at school and loving it.  Enjoying his last year before high school he is a straight A student in all Pre - AP classes and still loving football and was able to go with Jason and I on a two day weekend trip to see ATM and their Heisman winning Quarterback Johnny "football"  win the Cotton Bowl!  It was a special time away for Jason and I with him and I realized just how fast he is growing up!  Time flies by too fast!  Jason & I are great just in a busy season with work & homeschooling but we love it!  Jason got to go hunting & shot with a bow and arrow an award winning Buck!   So proud of my man!  My freezer is stocked with deer meat! 
That's about all for now!  We are just enjoying our long break between scans.  Halie scans again in March please keep her in your prayers and I will let you know when we get her schedule! 
Below is the info for the BAKE SALE!!!!

 

Hope you all enjoyed your holidays and are back in the swing of things for the new year! It is time to start planning our big Valentine’s bake sale and then we will have a nice, long break until our September Back-to-School sale.

Here are the basics:

· Date: Friday, Feb. 8th, 10am – 2:30pm (set- up starting at 9:30am)

· Please respond if you plan to work the sale

· Variety of baked goodies needed: Cookies, candies, brownies, cake balls, cupcakes, cakes (whole or slices), pies, cobblers, bread loaves, muffins, Chex Mix/snack items, a few sugar free or gluten free items, etc. Please, no items that need refrigeration.

· It is very important to label your item so everyone knows what it is (if it has nuts please indicate on label). It is helpful to price as well. If you are not comfortable with that, we can do it. See Tip Sheet for more details if needed.

· It is best to put the items in clear packaging. These buyers can be very serious about their purchases – they want to see what they are getting! Packaging can be as simple as clear Ziploc baggies or decorative packaging as long as you can see through it.

· If you have other friends that love to bake for a great cause or a child that needs to fulfill a service project, feel free to forward this email.

Drop off information:

· The Woodlands area: Charon’s house, 18 Tamarind Place, Ph: 281-543-3802; anytime (day/evening) on Thursday, Feb. 7th

· Magnolia area: Jennifer’s house; please email her at jenniferpigott@att.net to arrange

· If neither location works but you want to bake, email one of us and we can figure it out… we have other helpers that live in different areas of town.

100% of the sales go to the Children’s Neuroblastoma Cancer Foundation to fund research, awareness and education. If you are interested in making a monetary donation online, go to the website (www.cncfhope.org) and click on “Donate Now”. Be sure to choose “Houston Bake Sale” from drop down menu. As always, if it is not a convenient time for you to bake this go round… that is okay! Thank you so much for your continued support.

Sincerely,

Charon Edgington and Jennifer Pigott

Neuroblastoma Parent Group Bake Sale Tip Sheet

 

Public Health Code has two specifics demands on Bake Sale items out of TCH…

-Items should be individually wrapped

This means that we wrap items as they are intended to be sold – a whole cake is fine, slices of cake are fine – just wrap them before arrival time, rather than slicing and serving on site.  You can package together groups of three cookies, single cookies, single brownies, single bars, etc.  Some bakers package 4-packs of cupcakes.  All of these options work well, just be sure they are packaged in the units in which they will be sold.

Label item and indicate whether or not the item has nuts

Since nut allergies are common, especially in childhood, and some of the families that we will be serving have medically delicate children, this is important.

Some bakers make labels by hand, some have found it easier to print labels up on a computer.  Either option is fine.  A great label will have the name of the item, whether or not it has nuts, and a price.

 

Other tips from Sale Day

Pricing  - a lot of bakers are unsure how to price items to sell.  There is a lot of range.               But, it is helpful for us to have the items pre-priced.  Here are some suggestions –

3 med/large cookies for $2.50 (less for small cookies)

Brownies at about $0.50 -  $1 each

Cupcakes at about $1.50 each

Loaves and breads range with a starting price of about $7 (mini loaves $3-4)

Cakes and pies really range.  They can go from $10 - $12 all the way up.

Please take into consideration your time and special ingredients you use in setting prices – if you take extra time, or use special ingredients, these baseline prices

should go up.  We have a wide range of customers on sale day – some will look for the lower-priced items, whereas others will be willing to spend quite a bit more.

 

Packaging  -  From what I have observed, the sturdier the packaging, the more likely the item is to sell quickly.   This is especially the case for cakes and pies.  If the cake or pie looks absolutely fabulous, but the packaging is somewhat precarious, it doesn’t sell as fast.  You should be able to pick up specific cake boxes at your grocer’s bakery.  Or, there are many aluminum foil-type pans with clear lids available at the grocery store.  When bakers use these types of packages, the items tend to sell very quickly.  Package cupcakes in groups of 1 – 3.

           

            It also seems that items that are packaged in very clear packages sell more quickly than darker, even more decorative wrap.  You can buy clear plastic bakery bags at places like Michael’s with decorative twist ties.  But – we’ve noticed that even items placed in zip lock sandwich baggies tend to sell well.  The buyers seem to like to be able to clearly see what they are buying, and they like to be able to walk away with it in a sturdy container.