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.

 

 

 

 

Thankful

Psalm 98:1 Give Praise to the Lord a new song,
for he has done marvelous things.......

     I have great news!!!!!  NO Evidence of Disease & Halie's kidney function is up 20% we are so thankful for all the people who so faithfully pray for our sweet girl!  What a testimony of God's mercy and grace!  We have friends and family who were specifically praying for her kidney function to improve,  and God just simply showed off!!!!!  Awesome!!!  I love how the doctors are always amazed!  You see her kidney function after treatment last July was 65 and after 1 year post treatment her function was only up to 70.  OK, so those numbers may not mean much to you but she was what is called a hyper filtrater and when she was originally diagnosed her Kidney function was 180 so 65/70 is low for a normal kiddo but really low for her. I know, I know a lot of info but honestly after all the harsh treatments we have done to her precious body we were not really looking for it to go up too much!  We were expecting to be referred to Renal Dialysis.  So, the awesome thing is that after 3 months her function shot up 20% to like 87.  I am always stunned and amazed by Him!!!!   What a gift for Thanksgiving!!!!!  Thank You, Jesus!!!  We are blest.
    
O.k. with the Holiday Bake Sale coming up I thought some of you may like some info about Neuroblastoma so here is link with some helpful info.....
What is neuroblastoma | CNCF

BAKE SALE NEWS 
A letter from Jenn & Charon

We hope you had a great Thanksgiving and enjoyed some time with family and friends!  It’s time for our Holiday bake sale at TCH.  In memory of Hans Weberling and the other special children who have or are still battling cancer, we are going to honor all those kiddos at this bake sale.  In addition to the bake sale, we have been collecting some of Hans’ favorite things to be passed out at TCH that day or donated to TCH to be passed out at another time.  We are still collecting items up until the day of the bake sale.  Some of Hans’ favorite things were his PJ’s and toys such as Transformers, Bionicles, and Legos.  We are accepting new and unwrapped items for boys and girls from Toddlers to Teens!  It does not have to be the toys listed above – any toy donation is great.

 

To the parents of those kids who have battled cancer, are still in treatment, or have completed treatment – we would love to have a picture of your child to display on the bake sale tables.  If you will be at the bake sale, please bring it with you or you can email me a picture and I can print.

 

 

Here are the basics:

 

·         Date:  Friday, Dec. 7th, 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:
Contact me & I will email you the Woodlands or Magnolia drop off addresses!  jenniferpigott@att.net

 

100% of the sales go to the Children’s Neuroblastoma Cancer Foundation (www.cncfhope.org) to fund research, awareness and education.  If you are interested in making a monetary donation online, go to the website 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.

Also please check out this link from the CNCF facebook page!!!

• Special tribute to Hans Weberling at annual Houston holiday bake sale | CNCF

Sincerely,

Charon Edgington and Jennifer Pigott

He himself bore our sins in his body on the tree, that we might die to sin and live to righteousness. By his wounds you have been healed. 1 Peter 2:24

     I have been working on the questions for the Woman's Bible Study at C3  and this weeks study is on being scared.  I know that most woman struggle with fear, worry & anxiety in some way or another and I am no exception!  I think  I can safely say that as a Cancer Mom FEAR is where I have a tendency to get  "stuck".  When Halie was diagnosed with a rare form of childhood cancer two years ago I didn't  lose my faith or get angry, God became more precious to me during those years in the battle than I ever dreamed possible.  He became my life, breath and my hope in ways I never knew before and His compassionate love covered me in ways I will never truly understand this side of heaven & I am forever grateful! But, my life has been forever changed by Cancer.....  during those days, months and the years that have now followed God has been so very gracious to our family as we have a healthy and vibrant 5 year old daughter and Chemo, Radiation, Surgery, Stem cell Transplant & Immunotherapy are all a part of our past ...  we pray.....  Her cancer is truly a beast and fear of relapse is always lingering.  We scan every 4 months now and by the Grace of God she has been No Evidence of Disease for over a year but we are far from being on the other side of Cancer.  For the next 4 years we will scan, take blood and watch....  always watching.....

      This precious child who now runs and plays and is enjoying Kindergarten.....  looking at her you would never know all she has gone through if you didn't see her scars.... 

     Scars....  I have been thinking on this thought a lot lately.  I was giving Halie a bath the other day and I realized there is not a day that I am not reminded of her battle with Cancer.  The scar on her neck where we biopsied the first tumor, the scar in her chest where her central line was placed and the scar that runs completely across her abdomen where with skilled hands her surgeon removed a tumor the size of her daddy's fist.  Her body will forever bear the scars of her battle with Cancer until Christ returns and gives her a glorified body!  ( you see one day her body will be flawless yet Christ our Saviors body will forever for all eternity bear the scars of Calvary!) The incarnate son who forever took a beating heart will forever bear the marks of his battle for our souls! "see the depths of his love in the wounds of His grace, Hide away in the love of Jesus!!!!" I am in awe! complete awe!!! Thank you Jesus!

      I also have been thinking about the hidden scars.  The ones I have hidden deep in my soul.   The scars that hide the pain when a child we love dies from this horrible disease, The grief that breaks my heart as I sit with a Mom who has lost her child and wonders why?  the fear of relapse... fears, so many fears....   Job 3 says that " for the thing that I fear comes upon me and what I dread befalls me.  I am not at ease, nor am I quiet; I have no rest, but trouble comes." To say that I mustered up the strength to get through the following days, months and years after her diagnosis would be a lie.  God knocked all my props out from under me and I learned to trust him only him, not in his gifts as wonderful as they are but Him.  I knew (know) we have no promise of an easy life....    My scars are not visible.  They are hidden beneath a wounded smile when my daughter complains of a mysterious ache or pain.  when she is whiny or clingy and wants to be held.  The fears that lurk in my mind are ever present - ever real.

  The Lord knows the depth of my struggle that I am an idolater that loves His gifts more than Him at times and  I constantly  need to be reminded that I will never have the peace (the freedom from fear) this side of heaven as long as I continue to look to anything besides Him to satisfy my soul.  I will be restless until I remember that what I long for can only be satisfied in Him.  Not in anything else no matter how good that thing is. True freedom lies in focusing on Jesus!  You see the gospel, the fact that Jesus as God became Man and led a sinless life, died on  a cross for our sins and three days later rose again forever breaking the bonds of death-- affects my life today  because when I am afraid I don't need reassurance that all is well.  (because that is fleeting) what I need is Jesus!  Christ says Come to me, all who labor and are heavy laden, and I will give you rest. ²⁹ Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. ³⁰ For my yoke is easy, and my burden is light.” What we need to remember dear friends when we are afraid is the Gospel.  Elyse Fitzpatrick says that he has done everything possible to clear the path for you .... run to him!!!!  His love is unconditional!  He's not worried about you cleaning yourself up (getting it together) before you come to Him.  Run to him like a child runs to his Father.... 
 
      Beloved you don't have to wait until you have it all together!  Run to him!  When we focus on Him --- Freedom from fear (sin) will become easy because the idols that used to draw us away from him will have lost their power!
 Thank you Jesus! 

Father, Help me not to be anxious to see too far in front, nor careful about the next step, not eager to choose the path, nor weighted with the heavy responsibilities of the future, but help me to quietly follow behind you , the Shepherd, one step at a time. Right now while dangers are nigh! and the fears in my mind are shaking and my heart seems to dread what life may hold in store; help me to remember that We are Yours--You know the way we're taking, When doubts cast their weird, unwelcome shadows o'er me, comfort me that your word only YOU Father can strengthen & restore, And never let me forget that You GO BEFORE US. AMEN

 

God used this devotion to minister to my heart last year when we were rescanning Halie when we thought she had relapsed.  ( she had a bone scan that lit up in her legs.)    It encouraged my heart then and once again this week! I wanted to share! 

 

Streams In the Desert
Put Forth

"He putteth forth his own sheep" (John10:4).

Oh, this is bitter work for Him and us--bitter for us to go, but equally bitter for Him to cause us pain; yet it must be done. It would not be conducive to our true welfare to stay always in one happy and comfortable lot. He therefore puts us forth. The fold is deserted, that the sheep may wander over the bracing mountain slope. The laborers must be thrust out into the harvest, else the golden grain would spoil.

Take heart! it could not be better to stay when He determines otherwise; and if the loving hand of our Lord puts us forth, it must be well. On, in His name, to green pastures and still waters and mountain heights! He goeth before thee. Whatever awaits us is encountered first by Him. Faith's eye can always discern His majestic presence in front; and when that cannot be seen, it is dangerous to move forward. Bind this comfort to your heart, that the Savior has tried for Himself all the experiences through which He asks you to pass; and He would not ask you to pass through them unless He was sure that they were not too difficult for your feet, or too trying for your strength.

This is the Blessed Life--not anxious to see far in front, nor careful about the next step, not eager to choose the path, nor weighted with the heavy responsibilities of the future, but quietly following behind the Shepherd, one step at a time.

Dark is the sky! and veiled the unknown morrow Dark is life's way, for night is not yet o'er; The longed-for glimpse I may not meanwhile borrow; But, this I know, HE GOETH ON BEFORE.

Dangers are nigh! and fears my mind are shaking; Heart seems to dread what life may hold in store; But I am His--He knows the way I'm taking, More blessed still--HE GOETH ON BEFORE.

Doubts cast their weird, unwelcome shadows o'er me, Doubts that life's best--life's choicest things are o'er; What but His Word can strengthen, can restore me, And this blest fact; that still HE GOES BEFORE.

HE GOES BEFORE! Be this my consolation! He goes before! On this my heart would dwell! He goes before! This guarantees salvation! HE GOES BEFORE! And therefore all is well. --J. D. Smith

***

The Oriental shepherd was always ahead of his sheep. He was down in front. Any attack upon them had to take him into account. Now God is down in front. He is in the tomorrows. It is tomorrow that fills men with dread. God is there already. All the tomorrows of our life have to pass Him before they can get to us. --F. B. M.

***

"God is in every tomorrow,

Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for the way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain."