No More Code Red

We have left, hopefully forever, the season of code red for our family. For two and a half years now, we have been on constant watch, constant alert with tight nerves watching every move Sarah's body has taken. Now, we are looking at the toll it has taken on Sarah and on all of us. We have been advised to seek counseling and actively seek out opportunities for healing. There are not many resources, amazingly, to help navigate the after-treatment effects, both physical and emotional and social, for a cancer kid and the emotional effects for the siblings and parents. We are even looking into helping be a part of the solution for that problem. But for now, we are starting with counseling. At the end of the month, we will be going out of state to the only off-treatment cancer kid family camp I have found where they have counseling and group sessions with other parents and kids. It will be four days to focus on what we have not been able to deal with before now.
Then in September we will be going to a cancer family retreat in Alabama to continue with our family's rebuilding. I am a little apprehensive to start this new season, but I know we cannot continue to operate as a family where we are right now.
When Sarah's life hung in the balance by the day, there was no time to spend on anything other than her immediate treatment. Now, the effects of the past two years are large before us and continue to creep up in daily life for me and Jay,  for her closest sister, Hannah, and even a little for Rebekah. In some ways, it is similar to post traumatic stress disorder, but on the flip side, it is like living in a small town your whole life and then traveling to the most amazing places of the world and going back home again, only to realize you can never fully convey where you have been and what you have seen and experienced. It has been a terrifying journey and yet a grace-filled miraculous one. I pray that our family gets the help we need at this stage.

At the flour mill

Sarah was asked to be a part of The Portrait Project: Courage and Cancer. She went for her photo shoot this week in the old flour mill in Downtown McKinney. It was such a neat place to take pictures. You can see some pics of her and the other cancer kids here. https://www.facebook.com/portrait.project
There will be a fundraising event where each child's picture on a large canvas will be revealed. The event will be in September, and the money raised will go to the Children's Cancer Fund in Dallas.

Sarah wasn't feeling her best during the photo shoot but really wanted to make it through. She has some fever tonight and a sore throat. She also has continued to have some strange, dry, itchy, rash-like patches on her hands and arms and face. The doctors said that during this time of recovering from the chemo, many bad things can occur. So, we are just living one day at a time, still, and praying our way through each thing that comes. I guess that's what we all should be doing anyway:) But in the daily rush, we forget. Even this mom of a cancer kid. So we can even be thankful for the chemo side effects as it brings us back to living full right in the moment. I need to do more of this. 

Kohl's Cares

We were just notified that Sarah was the store winner for our local Kohl's store for their Kohl's Cares program. We got a $50 gift card! Sarah was nominated for her "Snacks for Kids" project where we raise money or get donations for snacks and take it to the Cancer Clinic at Children's Medical Center every two weeks to a month.
Thank you to all of you that have donated money and snacks. You have been a blessing to so many cancer kids.
We just got back from our two months in Alabama. It was a great time of serving and seeing Jay's family.
We will post some pictures from our adventure there and tell a few fun stories soon.

800 days

On January 18th, 2010, Sarah received her first chemo treatment. If my math is correct that means we are over 800 days of being in a chemo treatment program. Tonight, we pray, it will be the last night she takes a chemo pill. Praise God!

I went back and read the blog post from January 2010 and I cannot believe it is over. I remember receiving the program from the doctor in the hospital and I immediately did the math and said she will not finish until 2012!! Thank God, we've made it to 2012!

In all of this, I have been amazed how strong our Lord has made Sarah. I've admired her attitude and maturity during this process. This maturing process is also a sad aspect as she will never be that little girl that I carried into the hospital in 2010. This experience has forced her to be a young lady much too fast. Life has changed for all of us, we will never be the same. I praise God that the Anchor, Jesus, never changes. His love has been constant and unchanging. It did not matter if we were at the depths of despair or highest of joys, we could not be separated from Him and His awesome love.

As people read our story, our hope is that the theme has been constant. The best way to end is by a hymn that was written to encourage a person going through a terminal illness. It describes our journey in such a powerful way. God Bless,

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground is sinking sand.

When darkness seems to hide His face,
I rest on His unchanging grace.
In every high and stormy gale,
My anchor holds within the veil.

His oath, His covenant, His blood,
Support me in the whelming flood.
When all around my soul gives way,
He then is all my Hope and Stay.

When He shall come with trumpet sound,
Oh may I then in Him be found.
Dressed in His righteousness alone,
Faultless to stand before the throne.

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground is sinking sand.

In pain but doing better

Thanks for your prayers yesterday. The only problem we had was a delay with the doctors' arrival but we were still home by 1pm.

You can see pictures of Sarah, mommy and her port.

Please keep praying for Sarah as she is on pain medicine. Her chest hurts from the port removal and now her back is hurting. They saw some bruising from the injection to her spine so they told us this was going to be a painful recovery. She has mixed emotions on pain medicine and just finishing steroids so she is going up and down with emotions.

The next big day is Saturday. She will take the last chemo pills on the 24th, which is also Deborah's 1st birthday! We will have a big day.

Blessings,

Reminder to pray for Sarah tomorrow

Sarah goes in at 6:00 AM tomorrow for her surgery. They will remove her port and give the last spinal tap. Please pray for a smooth day and that the pain will not be too bad. This week has been very emotional as we finished the last chemo push, steroids, methotrexate and now we are removing the port. So pray for all the family as we deal with this in our own way, including little sisters. :)

March Video Update

We will be participating in Race for Wishes on Saturday, March 24th at Williams Square in Irving. This will be a fundraising event to raise money to give children with a life-threatening disease a wish through Make A Wish.

Sarah is the team captain and is raising money to sponsor her for the race. Hannah will be doing it with her as well.

We would love anyone to join our team and come participate in the event with us. There are lots of fun things to do that morning too like face painting, a bounce house, crafts, food!

If you would like to join us or sponsor us with a donation of any amount, please go to our team page

http://raceforwishesdfw.kintera.org/faf/donorReg/donorPledge.asp?ievent=1000010&supId=353085581

Updated schedule in March

Sarah had the next to last Vincristine push yesterday. She is a little tired but her numbers were great. Steroids started yesterday so only this week and a week in March left with steroids. Then we will really know if it is the drugs or she is just being a 9 year old!

Her appointments were moved around in March. On March 13th she will have the final Vincristine push, start steriods. March 19th is the surgery for the back procedure and removing her port. March 26th is the last day she will take her daily chemo pills!!!!

Finally, the webpage for Wish Night is up. You can see Sarah's pictures at:

http://www.wishnight.org/
http://www.wishnight.org/auction/

Fun News

I thought you would also want to know about the fun things Sarah continues to have the opportunity to participate in.

1. She is one of the featured children for this year's Wish Night. This is the Make-a-Wish yearly event in North Texas. You can see one of her pictures from the photo shoot she did a few weeks ago. The theme this year is 1920's so she had fun dressing up in old style clothes. We won't be able to participate in Wish Night this year though as we have another opportunity that same month.

2. The Children's Cancer Fund has a yearly fashion show event to raise money for Children's Medical Center's research of kids' cancer. Sarah is excited about this fun event because we are helping raise money for research. She is also excited about her new dress from Dillard's that she gets to keep. I am a little excited about meeting people like Troy Aikman and Roger Staubach. You can read more about the event at http://www.childrenscancerfund.net/events/ccf-lunch/

less than 2 months

Well, we have the end of chemo in sight! Sarah will go next week for a clinic visit and chemo and then we only have one more month to go. March will be the big month! The week of March 11th she will take steroids for what we pray the last time. On March 23rd, she will have surgery to remove the port and they will do the last back procedure at that time. On March 26th, she will take her last chemo pills!! My eyes swell up with tears as I read that sentence.

I personally have not dreamed much of that day because there are so many challenges we face on a daily basis, but as we get closer I am finding myself thinking about it more. I wish I could say I was a man of great faith who did not have any doubt that she would not face future challenges with cancer. I wish I could truly relax and not worry about her on a daily basis, but that is not the case. The cancer can come back, she could have many struggles with her body going through chemo "detox". We could find out years down the road that the chemo made her infertile. This will not leave us, it is a challenge Sarah, Anne and I will have the rest of our lives. The temptation is to fear bad news about Sarah's health and future.

The only Hope we can rely on is Jesus. The One who has walked with us during this challenge. I am continually reminded how my life is a daily struggle. I might not ever know the word 'relax' again, but I can still find Peace in the storm. Thank you Jesus for that calm even though my life rages with fear and doubt. We are in such need and the good news, Gospel, tells us that He can provide for all our needs. Wow, what a savior!

Please don't forget us in your prayers. Sarah still has two years of monthly checkups at the cancer clinic. Her liver has taken an extremely amount of chemo over the last two plus years so we pray that nothing was seriously damaged. Please don't forget to pray for the Clark family. Now that we are almost to the end of the health battle, we have many emotional battles. Each one of us have emotional scars from the pain and hurt so we pray for emotional healing also.

Finally, we want to thank you soooooo much. Your prayers are so comforting to us and I praise God for this blog. It has meant so much to us.

Back on normal schedule

Sarah's ANC jumped to 700! She is back on her chemo pills and schedule! Praise God for this. The number is still a little low but within the range they want for her.

God is so good!

Continue believing

Thanks for all of your prayers. Sarah's ANC is still low but it did not go down much further. Hopefully this means by next week she starts back on Chemo. We went into lockdown mode and did not go out much. Our doctor did not feel this was anything serious and thought it was ok for me to travel, but if you are close to our house, Anne might need help early this week. Sarah cannot go out or be around people with a mask on, which she doesn't like wearing. So if anyone would like to take anything to Anne or help her out, that would be a blessing.

God has blessed us with so much. We have felt His peace once again and know that he is with us always. We keep believing that Sarah is healed and that He is protecting her in this situation. Thanks for joining us in the journey.

ANC is low

Sarah had her blood checked today and her ANC was 300. This means she is neutropenic so they have taken her off of chemo for a few days. Her other numbers are great so it seems that she is having a little bone marrow fatigue which can happen at the end of treatment.

As always we ask for you to pray, pray pray that Sarah does not catch even a common cold. This would send her to the hospital for a few days. To add to the stress, I am traveling to Asia on Saturday. So we ask Jesus to calm our anxiety and trust Him to protect Sarah and bring her ANC numbers back up.