Sarah Grace Clark

Fun News

2012-02-09T08:49:00.004-06:00

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

2012-02-06T20:37:00.003-06:00

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

2012-01-11T20:51:00.002-06:00

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

2012-01-07T22:19:00.003-06:00

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

2012-01-04T20:33:00.002-06:00

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.

Merry Christmas

2011-12-24T10:53:00.004-06:00

Sarah is playing with her sisters this morning. I hope she does not crash like yesterday but it is still a blessing to see her have the strength to play around. Now we have the steroid attitude, but we will take that over sickness any day!

Sarah and Hannah wanted to wish you a Merry Christmas by watching a performance they were part of at our church last week. It starts at the 7 minute mark of the video.

God Bless and Merry Christmas, Jay

I Bring You Good News from Bent Tree on Vimeo.

Christmas Update

2011-12-22T21:06:00.002-06:00

Thanks for your prayers for Sarah. The spinal tap went really smooth yesterday. Today has been hard for Sarah so please keep her in your prayers.

We hope that she feels better by Saturday so she can enjoy the Christmas weekend. This is the third year of battling this sickness and we are ready to have a normal Christmas. Two years ago she was sick in Hong Kong. We did not know it was Leukemia but she could not even sit up Christmas morning. Last year she was in the hospital with a mysterious virus. We left only a few days before Christmas. And this year we have a spinal tap a few days before Christmas and Sarah has stayed in her pajamas since returning home yesterday.

In all of this she is still so courageous. She still keeps her smile and somehow finds a way to be excited about everyone's presents. Tonight we were watching a movie and she looked at me and said, "Daddy, what did you do to mommy's stocking?" She could see it was filled today.

We try to remember that we celebrate the birth of a Savior who was totally inconvenienced by coming to earth to save us. His earthly parents had to live outside and Jesus was forced to be born in a stable. I am sure they wanted it easier, but God had other plans. We continue to want it easier, but does easier mean better?

I pray all of you have a Merry Christmas and continue to seek the King of Kings even in the hard times of life.

Turning 9!!

2011-12-13T18:43:00.004-06:00

Tomorrow, the 14th, is Sarah's 9th Birthday! If you want to send Sarah a message you can email through the blog or send me or Anne an email.

When Sarah was diagnosed in January 2010, we were told of Sarah's two and a half years of treatment and the thought of Sarah being 9 when she finished seemed so far away. Through God's grace and mercy, we've made it to the point that seemed unreachable two years ago.

We still have until January 2015 before the doctors use the word "cured", but it is a blessing to know Sarah only has three more months of chemo. She was supposed to have a back procedure tomorrow, but her doctors were really good to allow her to postpone it a week. A back procedure on your birthday is not fun. :)

Please continue to keep Sarah in your prayers. Her back procedure is on the 21st at 8 am. Also, over the last few weeks Sarah has noticed her hair falling out. We are told this will not be like before when she went completely bald, but it does make Sarah nervous. So keep that in your prayers also.

Thank you for sharing the journey with us. Over the last few months, Anne and I hit a wall with writing on the blog, but we pray we are able to finish strong as we start 2012 and looking to the end of chemo on March 26th, 2012.
In the next couple of weeks, we will send you an update on potential plans for 2012 and beyond.

Blessings, Jay

Even this trial, even this one

2011-10-27T22:48:00.006-05:00

Well, when Jay gets ready to go serve in Asia each time, there seems to be trials to go along with it. First, the baby gets a medium high fever, then Hannah and Rebekah get really high fevers, and then Hannah breaks out in a rash of tiny, red bumps all over her chest and sides. I think we are getting much better at dealing with such times though. Maybe this one was just Jesus showing us how he has grown us in this area time and time again- just for us to see and be encouraged by the peace we freely accept in the storm and how we now, therefore, do not overreact or get really discouraged. So, I am thankful for even this one.

Sarah is still having to deal with her cancer in many ways. There is always the physical aspect with feeling nauseous from chemo. Usually the daily chemo is ok, but the once a week 10-pill Methotrexate and the monthly IV Vincristine and spinal tap chemo make her feel worse. Steroids for five days out of every month make her feel aggravated and sad and give her hot, red cheeks - she is also very hungry!

As she gets older, the emotional side of having cancer is becoming harder to deal with. She is much more shy than pre-cancer and cries easily. She is nervous to meet people or go where new people will be since she looks so different than she did before - gaining weight from the steroids and having such short hair - not to mention the scars from a central line surgery in her neck and chest, port surgery in the other side of her chest, surgery to remove a tumor on her finger, and two biopsies on her leg when she had those huge mysterious red bumps. And she gets a rash now and then all over her face and ears which we think is from the chemo or steroids. She has had to learn coordination all over again, which is still a bit of a struggle, and she gets tired quickly.

She has always seemed older for her age, even from her toddler years. She used long complete sentences at age 1 and then just kept going up from there! She understood that Jesus died for her and that she wanted to live for Him at age 4. And just recently, I bought here a little dictionary and her eyes lit up as she took it to her room and started intently reading it and making notes in it, labeling pages to find them later! That Sarah just loves to know what is 'right and true' and doesn't hesitate to always share it with her sister - poor Hannah.

With all the gifts that have been given to Sarah during this past year, she is struggling with her desire to love as God wants her to and to not just think selfishly all the time. So many have served her for so long that she is now trying to cultivate a servants heart of her own.

Please pray for her as she looks to Jesus to help her grow in courage and character, to be able to have many moments of a carefree childhood, to embrace all the lessons and skills and abilities God has gifted her with in this process - as all of this is preparing her for the good works God has prepared in advance for her to do, for the great things He has purposed for her life.

Thank you for entering in to this journey with us. You truly bless us.

appointment on Wednesday

2011-10-10T20:48:00.002-05:00

Sarah has her clinic and chemo appointment on Wednesday. The appointment is at 2:30 so please keep her in your prayers.

The last few times these appointments have even been rough on her so she gets tired and a little sick to her stomach. After Wednesday we will only have five more to go!!!

Also, there are many opportunities to give this fall toward children's cancer research. My prayer is that through giving to these organizations they keep developing new drugs that one day will eradicate the need for chemotherapy in blood cancers. In case you do not know a person to support for Light the Night which is part of Leukemia and Lymphoma society, you can give through one of our friends below.

http://pages.lightthenight.org/sf/SanFran11/vswamidass

a little pain but we are good

2011-09-15T14:44:00.002-05:00

Thank you so much for your prayers. We all felt them during the back procedure yesterday. Sarah is experiencing more back pain than usual, but it is not as bad as the last procedure.

Also, below is a video of the flash mob that Sarah and Hannah participated in during church on Sunday. You can play the game, "Spot Sarah". A hint is she is in the back in a blue shirt. When the camera zooms toward the blue shirts you should see her face. Hannah on the other hand is very easy to find. The only hint I will give is she has a purple shirt on.

God Bless,

Bent Tree FX Live Flash Mob from Bent Tree on Vimeo.

Back procedure on Wednesday

2011-09-12T19:10:00.002-05:00

Please keep Sarah in your prayers on Wednesday. She has a spinal tap to inject chemo and take fluid for testing. After her last spinal tap in June, she had really bad side effects and had to go to the hospital for a few days. We of course do not want that to happen again. It was very painful for her.

So pray that she does not have side effects and that we get through the day without any problems. After Wednesday, she will only have two more back procedures with one in December and March.

Thanks so much for sharing the burdens with us.

a good week

2011-08-19T19:59:00.002-05:00

The follow up x-rays of Sarah's hand were great. We do not have to go back until February to see the specialist. There will always be a chance the tumor can grow back as long as her growth plate stays open. So we will have to keep following up with the Doctor for a few more years. Hopefully soon, we go to one year visits.

She if feeling better after the chemo on Tuesday. All of the girls are excited to go hear Bethany Hamilton speak at Fellowship Church tomorrow. My girls are huge Soul Surfer fans! They highly recommend the movie.

another request

2011-08-17T21:25:00.003-05:00

Thanks for your prayers yesterday. The appointment was very smooth and Sarah's numbers are good even with the increase in her daily chemo pills. She did not feel very good today so please continue to pray for her.

Also, please pray tomorrow as Sarah goes for a follow up for her finger. Even though the tumor was benign it still can grow back so we of course don't want that to happen. We also continue to pray that Sarah's finger grows straight as the tumor was on her growth plate.

Number 8

2011-08-15T17:11:00.004-05:00

Tomorrow is Sarah's monthly chemo appointment at the clinic along with starting steroids. Please be praying for her as she is more tired and nauseous from these trips. The appointment is at 3pm.

Also, a few weeks ago we went back to visit an old friend at Sea World in San Antonio. Elrod the sea lion is a hit in the Clark family. His legend grew even more after seeing him act in his show. He is a precious creation from our heavenly Father.

I also want to thank Mike Poole and Sea World for all they've done for Sarah and our family. It is great to continue to receive these blessings to help us keep our endurance.

Video from trip to Trail West

2011-07-22T11:26:00.001-05:00

With being on vacation and traveling most of June along with my school starting in July, I am behind on pictures and videos! I thought you would enjoy this video from our time at Trail West. Jay

another month down 8 more to go

2011-07-21T08:26:00.005-05:00

On Tuesday, Sarah had her monthly clinic visit to receive IV chemo in her port. Her blood counts were good, and overall she is doing remarkable well considering all the chemo she has endured over the past year and a half. I know that it is by God blessing her so please keep her in your prayers.

When the doctor was visiting Sarah in the clinic, I was able to talk more about "what's next" for us. Throughout this journey, the doctors have been really good at keeping us focused on today and not allowing us to think too far in advance. Now that we are only 8 months away from the end of Sarah's treatment, they are giving us more information. Below are some of the highlights.

- If she does not miss any chemo in the next 8 months (due to illness, etc.), her end date is the 24th of March. Which is ironically Deborah's first birthday. (When we get closer, we will post information for a party we hope to give Sarah to celebrate the end of chemo treatments.)

- In May or June she will have a surgery to remove her port. She will also stay on her antibiotics for six more months just in case she has any infections.

- Two years after the end of chemo, March 2012 to March 2014, she will go to the clinic once a month to monitor her blood counts. At first we will see the doctor each month, but eventually we will start just seeing the doctors every quarter.

- For one year, March 2014 to March 2015, she will meet at the clinic as part of a cancer survival "club". This will be more about helping her emotionally in being a cancer survivor. At the end of 2015, they will use the word "cured". Sarah will be starting her teenage years, so emotional issues will be a good thing to talk about.(At least that is what I am being told will happen when my girls become teenagers. :))

Of course, we believe she is "healed", but I admit that I look at the day they use the word "cured" with great expectations.

So the journey continues. We can see the end, but we know that God still wants us to focus on today. Our prayer request is that we do not think too long about the end, as great as that will be, but instead to make sure we stay strong today because we know from experience it only takes one moment, and we could face the horrors once again.

At home

2011-06-18T11:10:00.004-05:00

Sarah arrived home last night around 7. She still had back pain, but the fever never came back after the 1st day in the hospital.

The best we can tell is that Sarah's sickness was not connected to Hannah's virus. It looks like Sarah just had a rough time with the back procedure and some phlegm worked its way into her lungs even with them suctioning out her throat while she was asleep during the procedure. The pain she was experiencing was from the needle going into her spine. She still has some swelling but she is able to walk around much better. We really don't know why this one was so different. We can't count how many procedures Sarah has endured over the past year and a half and she never had this many problems. It is a hard reminder that you never are able to relax while enduring chemo. She is on some extra antibiotics for a while and some pain meds for her hips, back and headaches. We still aren't quite sure of all that is going on inside her little body.

Now, we have to quickly forget the past week. After arriving from Colorado on Saturday, I was looking forward to a quiet week at home before my trip on Monday. Instead, our home airconditioner went out on Monday when it was 102 outside, and we had to spend the night at a hotel since it was too late to get it fixed. Then Sarah stayed in the hospital for two days while Anne had to take Hannah (twice) and Rebekah(once) to the doctor. Even with all of this, God gave us the endurance to persevere. Last night, the girls wanted to give me my Father's Day cards so I would have a few days to enjoy them before I leave. As Sarah, Hannah and Rebekah walked up to me (I was holding Deborah), I was overwhelmed with the love of my heavenly Father. With trials like this week, it reminds me the incredible blessing it is to be a father. The brokenness of my heart increases each time I see Sarah suffer. The beauty of it is that brokenness is not allowing anger or resentment to dominate my mind/attitude, but instead the brokenness is causing me to be a dad who loves his children more richly and humbly. Of course, I am not perfect, but the fact I can see progress in my life gives me such joy to know the Spirit is molding me into the image of Jesus, and I thank Him for it.

Good Spinal Tap / But now inpatient

2011-06-16T11:32:00.003-05:00

Thank you for all your prayers. Sarah was in the best mood ever during her clinic visit and spinal take and IV chemo yesterday. Everyone went great and we were home before lunch. But then Sarah started having bone pain and shortness of breath with a 103.5 fever. So we went back to the clinic and since her fever and pain weren't going away, she was admitted to the hospital. Sarah is feeling better now with pain meds, and she loves being inpatient (a little too much). The doctor said we aren't going home today though.

Hannah has been sick since the weekend and her doctor said it was a possible strep so she is on antibiotics. But Hannah is still spiking fevers and not getting better. And Rebekah is getting a bit of a fever now too, so I am taking them both back to the pediatrician today.

Jay leaves Monday for Asia, so we are praying that he miraculously will not get sick or take any of these sicknesses with him!

We hope to get some more exciting pictures up soon from our week in Colorado, but it might take a little longer than expected.

Blessings,

From the Mountain Top to Reality

2011-06-14T21:25:00.004-05:00

We had a wonderful time at the Young Life family camp at Trail West. The not so good part is reality comes back to us way too fast. Sarah has a back procedure, spinal tap, in the morning. We ask that you keep her in your prayers from 8-12 central standard time. Her recovery is slower and slower after these spinal taps so she is starting to really count down, three more after tomorrow!!

Anne will write and post more fun pictures from the camp later in the week.

Treatment update and prayer

2011-05-23T22:14:00.003-05:00

Tomorrow Sarah has her monthly chemo infusion, her bimonthly blood work, and her monthly follow-up with the doctor. Each time it comes around Sarah is a bit nervous and a little down, and her body takes longer to recover the longer that she is on chemo (and it has been 16 months now). Please pray for her emotionally and physically and that she would continue trusting in Jesus through this big trial.

Here is a picture of our whole family at the Wish Night Ball. Also, here is the link for the video of the performance if you can't view the one in the last post.

http://www.4shared.com/video/_roKsRNR/wish_night_2011.html

Wish Night Performance

2011-05-21T13:22:00.004-05:00

The kids you see performing have a life threatening illness or they have a sibling who has a life threatening illness. Hope you enjoy!

http://www.4shared.com/video/_roKsRNR/wish_night_2011.html

Wish Night and Game ball

2011-05-19T19:19:00.005-05:00

It looks like we are on schedule for monthly reports! I believe this is good news because it means we are just doing life together without any drama from Sarah's sickness. Below are a few updates from the month:
1. Sarah's blood counts have continued to be where the doctors want. Her ANC is in the low range(where it is supposed to be), and even liver enzymes have been in acceptable ranges for a few months. This is a huge praise, and thank you for your prayers.
2. May has been filled with many events. I posted a few pictures for you see:
a. Sarah received the game ball in her last game of the season. She did so good all year and we are so proud of her courage to play even though there were a few games she did not feel 100%.
b. We participated in "Wish Night" for Make-a-Wish Foundation of North Texas. Sarah and Hannah were among the group of Wish kids that performed for over 1400 people at the banquet. The theme was Sweet Things and they were in three of the dance numbers. Sarah and Hannah(the other two lost the battle early on) were able to stay up until midnight and eat the famous "midnight breakfast buffet" along with watching the live auction. As you can see from the picture, Sarah had an art piece auctioned off. I believe the final/winning bid was $66. The funny story is Sarah's Wish Volunteer was bidding and promised Sarah that she would win! During the night Anne and I were sitting and talking and Sarah comes running up very upset. She says,"Another lady has bid on my painting!!" Well the other lady overheard Hannah saying to Sarah that it was sad that more people had not bid on her painting so this lady started a bidding war. So we are sorry Tony that Hannah made you pay more, but thank you for your perseverance in winning the bid! :)

Anne sends her love and gratitude for your prayers. She has been full speed with all of her many tasks of home, kids and schooling. Deborah is growing fast and will be two months old next week. Wow, I can't believe she is already two months old!

For June we will update you with our trip to family camp in Colorado. A wonderful lady has raised donations and reserved the camp and is sending 35 families that have kids with cancer to YoungLife family camp for one week. God is truly amazing how he continues to bring exciting things into our lives just when we need refreshing as a family.

Snacks for Kids and other tidbits

2011-04-20T20:38:00.005-05:00

With Deborah Faith joining our family it has put us a little behind in blogging so I will give you a quick update.

1. Snack for Kids: As you can see from our picture, this is one of our snack runs to the clinic. Rebekah is helping us on this particular day. Thanks so much for everyone who has given. I wished I could have taken a picture of the teenage girl, who was in the clinic for treatments, when we walked into the office with our stroller full of snacks. To bring a little smile on a hard day is a wonderful experience.

2. Sarah is playing softball! Her team's, Comets, "funny" picture shows her having fun with her teammates. She is doing so good. Thanks to our world class physical therapist, Ellen, she is able to run with the other kids. The last two games she has doubled three times and scored each time. Again she has amazed me with her courage. To get back out and play a sport after the last year of having to relearn to run and regain her mobility shows so much about her character.

3. Lil Wrangler Event. Wow what a difference a year makes. If you look back to the pictures in April of 2010, you will see Sarah without hair and she looked sick. Now, you could hardly tell she is still taking Chemo.

Please continue to keep Sarah in your prayers. Recently, we had to go to a dermatologist because Sarah has developed a rash on her face. Unfortunately there is not much we can do as long as she is taking her monthly steroids. For the next year, we have to keep cleaning and most of all praying that it does not leave any scars on her cheeks.

We pray everyone has an wonderful Easter and rejoice that our Lord has Risen!

Jay

Deborah Faith Clark

2011-03-26T00:12:00.008-05:00

What a few hours! I arrived back in Dallas at 7am. by 10:34 Pm, Deborah is born. We had a few intense moments. Anne had an epidural and they tried to turn the baby but Deborah's heart rate dropped really low so the doctor immediately said we have to do a c-section. So in a matter of minutes Deborah was out and we discovered her cord was way too short that Jay couldn't even cut it! God protected us in many ways! Deborah is 7lbs 7oz. and 20 inches long. She didn't need any glucose due to my diabetes and she is doing just great! Thank you for your prayers! They were felt and God's hand so strongly guided the whole thing and we are blessed! Here are a few pictures of Deborah and her sisters.

Change of Plans

2011-03-24T19:55:00.002-05:00

Now there will be no spinal tap or PhD interview until next week because Anne is going to deliver the baby tonight! At her appointment today she was already dilated some and the baby is still breech with a foot hanging down low. The doctor doesn't want any chance of a breech delivery that could be dangerous, so we are going to the hospital tonight to try and turn the baby. If it works, they will induce Anne. If it doesn't, she will have a C-section.

We will keep you posted!

Prayer team

2011-03-11T14:26:00.003-06:00

First, I wanted to share another blog of our trip to Sea World. Click Here to go to Heroes for Children's website to read the blog.

Second, I wanted to ask you to pray for Sarah on March 25th. She goes for another spinal tap and we've noticed they are harder for her emotionally and physically. So we wanted to depend on the only One who can give us the strength to endure. If you can pray for her starting at 8am C.S.T. to 12pm CST on the 25th that would be wonderful. She always likes to know people are praying for her so you can also email us back and she can be encouraged with your comments.

Third and final item is we have the D-Date or End Date. March 24th, 2012 will be the final day of Sarah's treatments. This means we are almost a year away! My personality loves to be able to count down to achieving a goal so I need to share a few numbers with you:)
5 more spinal taps: including one coming up on 25th of March.
12 more monthly visits for chemo
12 more monthly steroid dosages (4 days,every month)
379 more days of chemo pills.

There is starting be a light at the end of the tunnel in this process. We are trusting God that He will continue to keep the leukemia away and for complete healing of Sarah so we can finish the protocol.

While I am asking for prayer, we have another item or two. I will be traveling from the 15th to 24th of March. We originally thought this would give me plenty of time to return home before Deborah is born but with Anne's gestational diabetes and Deborah is breeched, they've moved the induction as early as the 29th of March. Please pray for our family especially the safety of Anne and Deborah Faith.

Blessings,

Sarah in the news

2011-02-23T17:18:00.002-06:00

Click below to watch Sarah on KSAT 12 in San Antonio.

http://www.ksat.com/video/26958707/index.html

a day to remember

2011-02-19T10:18:00.003-06:00

On the 19th of February, 2010, we anxiously made our way to the Hong Kong airport. We were hoping that our decision to return to the U.S. for Sarah's treatment was the right decision. Our family was finishing 5-6 weeks of great trials and personally I was concerned that the challenge of moving back across the Pacific could possibly be the pressure point that pushes us over the edge. The thought of being on a 12 hour flight with Sarah just finishing five weeks of intensive chemo was extremely scary to me.

As we boarded the flight, after being held for 15 minutes outside the gate because the pilot was mulling the decision to allow Sarah to board or not, we experienced another great hand of the Lord. Psalm 94:19 " When doubts filled my mind, your comfort gave me renewed hope and cheer." I really don't know how Anne and I stayed sane during those 12 hours but I must tell you when the plane landed in San Francisco I had a huge relief come over me. (I probably checked her temp 50 times during the flight. Her poor little ears were sore.)

Now looking back, we know it was the right decision and we praise God ,but it has been a year in the U.S. that was not planned. Previously we had moved over the Pacific three different times. They were all on our own plans and according to our wishes, but the fourth was not. It is like what Jesus told Peter in John 21, in your surrender to Him there are times you go places you don't want to go in a way you don't want to go. Of course, I am like Peter so I immediately start pointing to others and Jesus reminds me that my relationship is one on one with Him.

Here we are a year later and the story continues. I know we have not written in a long time because we are just tired. Not so much physically tired, but just tired of it. We are tired of the pills, tired of the doctor appointments, tired of the struggles. Yet once again we get to share a testimony of how our Father, who has unfailing love for us, answers our prayers.

Sunday night we attended a Valentine's event for Heroes for Children, http://www.heroesforchildren.org/. It was a wonderful event. The kids had fun in their part of Northwood Country Club and they had a "romantic" room set up for the parents. It was great. As you entered you saw all of the door prizes. The Clark Family won a Wii for our first door prize which was great, but they also had a "big prize". Guess what? We won. We are leaving on Monday for a three day trip to San Antonio to have a personal tour of Sea World. The girls will paint with the sea lions. (Daddy will try to get in on that one.) We will also stay at the Hyatt Hill Country Resort. Most people say that alone is enough of a vacation.

Yet again, the Lord hears our prayers and gives us this wonderful gift so that we can take a few days to try to forget our current situation and be renewed for the journey ahead.

Snacks for Kids with Cancer

2011-02-15T10:44:00.005-06:00

Please click on the picture for details on how to be a part of this service project.
Thanks!

Daddy is home

2011-01-26T20:06:00.007-06:00

Jay is back home, and we have had no more ER runs. Sarah is doing fine and has just had to go to the clinic for routine blood checks and chemo.

It is nice to have these normal days. Some might say boring, but we praise God for boring:)

Although, with three little girls and a jetlagged daddy, you might think our days are anything but normal. Just trying to get through the homeschool daily schedule, keep Rebekah from coloring on everything in sight(where does she get these writing instruments?), and trying to catch my breath as I carry my big belly from one room to the next, is enough to keep us busy.

Drop by if you'd like to visit. We would love to see you and take advantage of this lull in sickness at our house and ER visits.

We did have a fun outing to the bookstore tonight. When Sarah Grace was in-patient not too long ago, she was shocked that the library at Children's Medical Center in Plano didn't have any American Girl books. So she decided to buy some and give them to the hospital library. We went tonight and she took her money and my coupon (my new thing of not going anywhere without a coupon) and bought 8 books in all. She was so very happy!

ER round 2

2011-01-17T21:56:00.002-06:00

We just got back from the ER tonight-yes, again. Sarah got another fever this evening, high enough to call the hospital, and they said we had to come in. It was only a 3.5 hour visit this time, and now we play the waiting game again and watch if her fever goes up again and wait to see if the hospital calls with a germ in her blood. Her blood counts have come down but only to 1900, which is still good enough to come home and continue on as normal, well normal for us:)

I am still betting this is a virus that will hopefully run its course soon!

Thanks to technology though we are able to keep Daddy posted and he is able to be in on decisions and much needed support. As we sat in our ER room in Children's Medical in Plano, Jay texted my phone from his meeting in Cambodia!

Well, off to get a little rest as you never know what tomorrow will bring:)

Past 24 hours and still clear

2011-01-16T08:41:00.003-06:00

We have made it past 24 hours with no high fevers and the hospital hasn't called saying the blood culture has grown any bacteria. So we are out of red alert and back down to orange.

Thank you for the encouraging emails and for checking up on us. I can't believe a week has gone by already, and we just have one more week to go until Jay returns.

With the Clark Family Schedule on the blackboard in the kitchen and with a few errands and classes for the girls here and there, the time moves along nicely each day. And of course, rest time for all from 1-3pm is faithfully enforced for the sanity of all - or maybe mostly for mommy's.

We do miss seeing our friends around here though and would love to have you for a visit anytime:)

Short ER Visit-just 3 hours!

2011-01-14T07:43:00.004-06:00

Sarah got a fever over 101.5 in the wee morning hours 3am, and after waiting an hour or so and her temp to confirm a few times, we had to call the hospital and then come to the ER for IV antibiotics and to take her blood to see what germ she has. But now we get to go home until they hear back from the lab on the blood culture results. Her ANC (good white blood count) is over 4000 which is a big jump from yesterday when it was 1390 at clinic. So it looks like her body is fighting something. I just pray we don't have to be admitted to the hospital to continue fighting it.

Sarah looks pretty good though and feels fine to go home.

I am a bit excited that we can hit Chick-fila on the way home for a chicken biscuit!

House Dish Washer is Missing

2011-01-09T20:21:00.008-06:00

I just realized that our house dish washer hasn't been to work in a couple of days when I came into the kitchen and saw both sides of the sink with mountains of dirty dishes. Jay does so much around here that he leaves big gaps when he is gone. Which reminds me that I must go out in the freezing rain before the sun comes up to put out the garbage can (after filling it with the trash from our house). I am counting down the 13 days left until Jay gets back from Asia.

Jay doesn't just give our family practical help. He also leads our family spiritually which are big shoes to fill when he is gone as he leads our morning family devotions. I have decided to capitalize on the 'all girl' aspect of our house during this time and do a mother/daughter devotion with the girls called The Princess and the Kiss. We have only done one so far and all I can say is I managed not to lose it at Rebekah as she shuffles around whining and crying loudly the whole time, at Hannah for her extreme handicapped in focusing and listening, and at Sarah for not ever wanting to admit that there is any hint of wrong in her life (such a perfectionistic attitude surely isn't coming from me:)!). I need to pray more before we start these little sessions as I really want to model for the girls to deny self and follow Christ in his love and sacrifice.

I was highly motivated to make it to church this morning as I am the sole guardian right now, so I am all there is even when I'm being pushed to the edge. Worshipping God renewed my soul and refreshed my weary heart to continue after Jesus. After making it home in the blizzard the girls played a bit in the snow and we made snow ice cream. Thank you God for such a fun and beautiful time.

If you don't hear back from me, I am either doing really badly and have blown it so much that the growling mommy voice is all I have left, or I am doing really well and I need every once of mental and emotional capacity to keep going. I do know that by prayer and supplication, by meditating on God's words, and by keeping focused on Him - the miracle of modeling the denial of self and following of Christ will happen. And in my weakness, He is strong.

A new beginning

2011-01-03T13:28:00.002-06:00

Today I rejoice because I am sitting at the gymnastics class not just watching Hannah, but Sarah Grace also. She is running, smiling, jumping and having fun. As this time last year she was weak, tired and sick. God continues to heal her and it brings so much joy to see her enjoying life a little.

Overall Sarah is doing really good. They have stabilized her liver enzymes, her ability to metabolize the toxicity of the chemo along with keeping a high metabolism that fights off the return of cancer cells are all really good. Her ANC is leveled at 1500 which they want so all in all we are thankful that everything is finally stabilizing. Of course, she has her spinal tap on Wednesday which is a nasty reminder that some things in 2011 will not change. She is already nervous about the procedure so please be praying for her. After Wed, we will only have 5 more to go!!! (once every three months ending in April 2012)

Also, I ask for your prayers as I start on another trip. It is ironic that I will be in Hong Kong on January 15th which is the one year anniversary of her diagnosis. It might be harder than I think but what I have realized in remembering 2010 is not just the hurt but the awesome presence of Jesus, which brings joy in the midst of the trial.

We are home!

2010-12-22T13:28:00.002-06:00

We just arrived home after a stressful morning. It is a huge blessing that Sarah was able to come home before Christmas, but she was sad because her port had to stay assessed which is an inconvenience for her and require a daily home visit from a nurse to give her antibiotics. Although once she arrived home she was happier from playing with her sisters and almost forgot she still had her port assessed!!

It is amazing how God uses our children to speak to us. This morning we were trying to wait patiently for our discharge and Sarah said "Daddy, I really don't care about presents for Christmas anymore, I just want to be with my family." It reminded me that God ordained Jesus to be born into a family and that first Christmas was centered on family. A mother/father and child. May we all slow down enough to see how important our family is to us. I pray God doesn't send you to the hospital for a week to see that! Maybe He can use us to show you. :)

Merry Christmas anyway!

2010-12-21T17:26:00.004-06:00

We pray you all have a wonderful Christmas as we celebrate our Lord who came to earth to be like us in order to take away our sins. This same child born in Bethlehem is truly the Prince of Peace and the One we rely on to guard our hearts and minds in Him. I pray we all admire, adore and praise Him!

We Can't Escape

2010-12-21T16:34:00.003-06:00

We are still in the hospital waiting for a confirmation on what bug Sarah has. She is feeling fine now, but the doctors need to know exactly what bug it is in order to send us home safely with the right IV antibiotics. So, we now hope to be out of here on Wednesday! (It is starting to get really close to the 25th now!)

Another Day

2010-12-20T13:10:00.004-06:00

The doctor just let us know that it will be one more day in the hospital. They have one more test to finish and it could not be sent over the weekend so they will not receive the results until tomorrow. At that time, they will know if it was a "contaminated" test result or the exact germ.

The good news is the second culture went the entire 72 hours without any germs so whatever it was, it is gone. The fruit of the spirit of endurance is much needed at this time. I am a little frustrated in the process. We know they have to be super conservative in dealing with bacteria infections but this is still not fun.

So we are on 38 days and counting for the number of days in the hospital in 2010. A record I never want to come close to repeating! :)

Blessings and Merry Christmas

P.S. I thought you might enjoy the picture of my beautiful women.

Update on Sarah

2010-12-19T12:39:00.002-06:00

Thanks for all of your prayers and encouraging emails/phone calls. Sarah is doing ok. She is not really showing any symptoms of an infection. She does not have a temp and the diarrhea has almost stopped. They believe some of the diarrhea is from the powerful antibiotics.

The good news is the second blood culture is not showing any infection for 48 hours. Her stool culture is still showing negative to any of the nasty stuff like ecoli/ salmonella etc.

The problem is they still don't know why the first blood culture showed positive and it takes a couple of days to isolate this germ. Soooo that means we will be in the hospital until tomorrow or Tuesday. This of course is really cutting it close to Christmas and we are not finished wrapping presents!!

As Anne wrote the other day, this trip has been different. We have experienced a few unique opportunities to share His goodness, and love on others in the hospital. Since Sarah is not showing any signs she is easy to take care of except she is starting to get agitated because she can't leave her room. This is the biggest prayer request is to give her peace until they release her to walk around the floor and see other people.

Another Hospital Stay

2010-12-17T19:20:00.002-06:00

Sarah had a low fever Wednesday night and she still had a bit Thursday morning, so we called the clinic. They had her come in for routine IV antibiotics since she still had some fever and they did a blood culture. Every thing else looked fine so she came home. Around 2:45am that night or morning, my dad came knocking at our door. Sarah's oncology doctor had been trying to reach us and both our phones were on silent! So she called my dad hoping she wouldn't have to resort to the police coming to knock on our door - that was the next step!

Sarah's blood culture from earlier in the day came back positive with a germ or bacteria or something in her blood, and they needed her back in the hospital right away as it could be serious.

So Jay took her to the ER in the Children's Hospital in Plano and they admitted her. She will have to stay until they can figure out what the germ is that the blood culture is growing.

Meanwhile, she is on some heavy IV antibiotics that cover a lot of different germs, but they are giving her some bad reactions of swelling, itchiness, and diarrhea and cramps. The diarrhea started at home though so they are testing that too to see if it could be part of this bug.

We will be in the hospital for a few days, so please pray for Sarah and our family. We know that God wants us there for a reason and we feel strongly that there is a ministry opportunity and some way he wants to use us to show His love and bless our family. So, we are excited about that.

Thank you for your prayers.

ps. The ironic thing is that today was Sarah and Hannah's well-checkup for turning 8 and 6 years old. Of course I cancelled Sarah's, but Hannah went and all is well for her:)

Sarah's Birthday

2010-12-14T20:58:00.003-06:00

Today was Sarah's birthday. We are sorry we did not get a chance to send out a reminder but we were traveling this weekend and last night we had the Christmas Party for kids going to the cancer clinic at Childrens.

Sarah had a great day and we do not take these birthdays for granted. We praise God for giving us another year with Sarah even as difficult this year has been. We rejoice at her birthday but also as we get toward the first anniversay of her diagnosis, we also have painful memories. As we look back at Sarah's pictures last year from her birthday, you can already see she was starting to look pale and sick. Of course, it took a month to find out exactly what was causing it but as we look back we know these were the first signs of the cancer.

As Paul tells us in the Bible we are to forget the past and strain toward the future. This is so true for us as we get closer to the end of the year and the 15th of January when our life was turned upside down.

We celebrate today and as you can see from the picture, Sarah is full of joy and thank God for that!

In case you missed it

2010-12-09T16:16:00.002-06:00

We had a great time as a family serving Children's Hospital.

On the radio today

2010-12-09T09:09:00.002-06:00

If you would like to hear Sarah on the radio today, we will be on from 12-1.

The station is 103.7 Lite FM or online at http://1037litefm.radio.com/.

Blessings and Merry Christmas

Unofficial video of the parade

2010-12-06T08:33:00.003-06:00

I thought you would enjoy our short video of Sarah in the parade. We will post the official version from WFAA when we receive it. Blessings and Merry Christmas!

Upcoming Events

2010-11-30T15:12:00.003-06:00

We are excited to be able to represent our wonderful hospital, Children's Medical Center, in a few upcoming events.

First, this weekend Sarah will be one of ten children whose stories will be told as they ride a float at the Children's Holiday Parade in Dallas on Dec. 4th. The parade starts at 10am and will be on Channel 8 WFAA in the Dallas area. The parade is free and you can also buy tickets for bleacher seating. Find more details at http://www.childrens.com/parade/ . An American Idol winner and now recording artist will be a part of the parade with Sarah and the other kids. Since we have lived in China for the past few years, Sarah doesn't know what American Idol is much less who this guy is. So we have caught her up a bit (not too much though) on such things before the parade:)

Second, next weekend is the Radiothon at Children's Medical Center Downtown in Dallas. Our family will be interviewed on the radio as part of this event on Thursday, Dec. 9th sometime between 11:30am and 1pm. You can listen on the radio at 103.7 Lite FM or online at http://1037litefm.radio.com/ .

Pray that we all stay healthy and rested so we can enjoy these wonderful opportunities.

Our Disney Trip!

2010-11-26T20:56:00.002-06:00

Disney, Here We Come

2010-11-12T14:00:00.004-06:00

Jay arrived with minimal jet lag even considering the Fall Back time change making the time difference not 13 but now 14 hours between the US and Hong Kong!

We are busy trying to get packed and organized for Sarah's Make A Wish trip to Disney. We leave tomorrow, so we thought it was time to buy a Disney guide book to get familiar with the place as it has changed since either Jay and I were there back in the 80s and early 90s. The books weighs 15 pounds. We should have bought it a month ago. I'm trying to speed read but don't think I will complete it all. Any advice from avid Disney World fans?

Being pregnant, I can't ride any simulators (so the book says), so that cuts the guesswork of Epcot down quite a bit (unless any of you can verify that you went on them pregnant and it turned out just fine:)

I just pray we don't have meltdowns and raised voices and whining - and just that will make it a successful trip.

Once we get back... and recover, we will post lots of fun Disney pictures!

We are so thankful for this time to not focus on cancer treatments and clinic visits and such and to just do something really fun. It has been awhile.

Safely in Asia

2010-10-28T21:28:00.008-05:00

Jay arrived safely in Hong Kong with his body clock fully shocked (by the 13 hour time difference) and ready to go. He will be going to Cambodia after the weekend and then back to Hong Kong and the back here in about a week and a half.

The girls were sad that he had to go and it helped to have a fun outing planned for after we took him to the airport. One of our Make-A-Wish volunteers arranged for us to go to Build-A-Bear at Stonebriar Mall and let all three kids make one. Sarah, being the wish child, was able to pick out whatever she wanted to accessorize her bear (well, she chose a bunny). We had a talk beforehand about not going crazy and keeping our greed in check. And they all did very well.

Two days down and 8 more to go. I have already started raising my voice a little too loudly and reprimanding a little too much and it's only been two days. Seems I'm asking forgiveness for doing those two things so much that I don't think any actual lessons are being taught other than asking forgiveness and that Mommy is weak and frail, too, and gets easily angered and frustrated. I really need to keep my eyes on Jesus and not on the three little button-pushers in front of me all day.

God has already sent some help my way when I have needed it and it continues. His grace to make it often comes from those He puts around us. I pray I hear his still small voice when he is calling me to be that grace for others.

There are also pictures of the Light the Night walk we did. The one in Plano was cancelled due to weather so we all joined the Dallas walk the next day. Our team raised over $1000 for the Leukemia and Lymphoma society. Thank you all for giving. Sarah wore her survivor T-shirt so proudly and we carried our lighted balloons that evening around the streets of down-town Dallas. It was a privilege.

Video from Tiff's Treats

2010-10-25T15:53:00.002-05:00

Make-a-wish made the following video and I thought you would like to see what we did on Saturday.

Catching Up

2010-10-19T07:56:00.008-05:00

I want to share a few items that were direct answers to our prayers in hopes that it will encourage you.
The pictures here will give you a better idea of a few of these things.

1. I was able to take Sarah and Hannah (along with Granddaddy) to their first Auburn game at Auburn. (We went to the Cotton Bowl here a few years ago to see Auburn.) This was very special to me because my dad starting taking me to Auburn games when I was 3, and it became our family tradition to go each season to the home football games. For so many years, we just never scheduled a trip along with a football game, so with our new outlook on life, I did not want to postpone something that was very special to all of us. I believe my dad is still smiling.

2. While we were able to travel to Alabama, we had a "Thank You" party for our extended family and friends there. I was able to take my city girls out into the country, and they did great. Our family in Alabama has been such an encouragement to us in our journey, and it was great to spend time with them.

3. Hopefully, in the picture above you can see Sarah jumping on the trampoline at gymnastics. Yes, she enjoyed 2 hours along with Hannah. This is huge because of how fast she is healing from the intensive chemo. She recently received her 6 month assessment from her physical therapist and our therapist said she has never seen someone recover as fast as Sarah. Six months ago Sarah scored a zero to 1 on many of her skills test such as standing on one foot. Her initial assessment said she had the mobility of a 4 year old. Thanks to our wonderful and amazing Father, she scored very high on many of the tests this time. Most of the tests, she was back to the 7 to 8 year old range. We still have more therapy to go as she still cannot run normally, so please keep her in your prayers.

4. We were given tickets to the last day of the State Fair of Texas. Sarah was able to see Big Tex for the first time. Again, it is such a blessing for us to do "normal" things as a family. Many years before we moved to Hong Kong, we complained about the crowds at events like this, but now it seemed normal to us even smaller compared to China!

In all of this, we still have difficulties as Sarah is having problems with her liver. Her metabolism of the toxic chemo chemicals is too slow which is causing her liver enzymes to shoot up. They are going to give her a mixture of the current daily chemo pill at a lower dosage along with another chemo pill that does not cause the same issues. The problem with this other chemo pill (6TG) if given in high dosages can cause a more serious liver problem. They saw this side effect in almost 20% of kids taking this pill years ago and that is why they do not use it for maintenance now, so we will probably be going to weekly or biweekly visits for the rest of the maintenance (next 2 years) just to monitor Sarah's liver. This of course was not exciting news as we thought we would be at monthly visits at this point, but we know God will provide the strength for this.
EXCITING EVENTS!
We are looking forward to this weekend when Sarah will be the honored guest at the Grand Opening of Tiff's Treats in Addison to raise money for Make a Wish Foundation. Look at this link http://www.cookiedelivery.com/dallas/grandopeningaddison.asp and come by for your $3 box of warm cookies and even win prizes! We will be there from around 1-2pm.
Then in the evening, our family and some friends will be walking in the Light the Night Walk on the Legacy Campus. http://pages.lightthenight.org/ntxok/Plano10/SarahGrace

Thanks so much for your prayers and please keep them flowing!

Starting Chemo Again

2010-10-11T18:52:00.003-05:00

Sarah's counts are all up enough to start chemo again, but they are starting her daily chem pills at half dosages in order to avoid the liver stress. Then I guess we will reevaluate to see if it is a) not effecting her liver and b) still enough to fight the Leukemia.

Sarah's spinal tap is Wednesday where they take a spinal fluid sample and then inject some chemo. It use to be weekly and now it is every three months. So it is good that it is so infrequent, but that makes it scarier for Sarah when it does come around since it isn't 'routine' for her anymore.

We are really getting excited about the Light the Night walk and the grand opening of Tiff's Treats! Thanks to all of you for such encouragement and support with these things. It is helping Sarah start to inch back in to her former confidence.

Good News but a Little Disappointment

2010-10-07T15:58:00.002-05:00

The good news is that after being off chemo for over 2 weeks, her liver is almost back to functioning normally. But the blood work also showed that Sarah is neutropenic again - her white blood cells are too low, almost non-existent. So we are in isolation mode until we can do blood work again on Monday. They doctors are wanting to start her chemo again, as am I, since that is what is keeping the Leukemia away.

Treats and a Walk

2010-10-01T17:05:00.004-05:00

Thank you all for your congratulations on the new baby. We are very excited.

As we mentioned in the video on the last post, our family will be participating in a few things in which we need your help. First, we are joining the Light the Night Walk done by the Leukemia and Lymphoma Society to raise money for cancer research and patient services. You can donate or come out and walk with us. Sarah will be carrying a lighted white balloon given to all cancer survivors. There will also be games and food that night. Here is the website of Team Sarah Grace http://pages.lightthenight.org/ntxok/Plano10/SarahGrace .

You can go to the website to donate or to join our team to come and walk on Oct. 23rd.

Also on Oct. 23rd, Sarah has been asked by the Make a Wish Foundation to help with the grand opening of Tiff's Treats in Addison http://www.cookiedelivery.com/dallas/addison_progress.asp . Our family will be there around 1pm on Sat., Oct. 23rd to help with handing out cookies and such. The profits of the day go to Make a Wish Foundation to help grant wishes to children with life-threatening medical conditions. We would love to see you there!

video update

2010-09-23T16:56:00.002-05:00

written on the 13th- it's almost funny

2010-09-17T09:20:00.002-05:00

(Anne wrote this before I wrote the post below, but she posted it to our old family blog somehow where I found it)

Jay did get home safe and sound. With the usual Asia jetlag, he jumped right back into work and family, trying so hard to stay awake during the day. He made a valiant effort and after a little over a week of that, he was almost back to normal.

Jay also came back with a sinus infection, or maybe I gave it to him when he returned as I had been fighting one for about a week. So we both were on antibiotics over the weekend.

We were in semi-isolation mode for the week or so after Jay came home since Sarah's blood counts dropped so low. Her ANC was 290, and anything under 500 is neutropenic which means you have to be extra cautious about germs since she doesn't have many white blood cells to speak of.

The doctor also stopped her chemo for the week to get her blood counts to go up, which was a bit scary for me as the chemo is what is fighting against the Leukemia. For these next two years, Sarah takes chemo every night, a 9 pill dose of a different chemo on Wednesdays, antibiotics for 3 days out of the week, steroids for 5 days out of the month, nausea medicine as needed, IV chemo once a month and spinal tap chemo every three months. She gets her blood counts checked regularly. Her ANC is now up to 1390, and she will have IV chemo in the morning.

When Sarah's counts were so low, Rebekah started having a runny nose for a few days, but Sarah made it through that without an ER visit. Hannah has been complaining of a headache and stomach ache for a few days now. And tonight, Jay is in bed with a fever and nausea. Every one else's temperature is fine...I know that since I take everyone's in the house on a regular basis. But Sarah is complaining of a headache and stomach ache. So I just gave her a nausea medicine along with her nightly chemo, which can't be given until 2 hours after eating.

I am feeling terrible myself and do not look forward to my night on the sofa - with Hannah in here too for the moment since the girls couldn't settle down, and it's 9pm, so I had to separate them.

I need to go get my Bible and just read and pray through this one as I am in over my head.

about the event on the 24th

2010-09-17T09:09:00.002-05:00

In case you are attending the
Children Helping Children Junior Singles Tennis Tournament Kickoff Party
Friday, September 24, 2010

it will be at the
Plano Convention Centre
2000 E. Spring Creek Parkway
Plano, TX 75074

Sarah and I will speak about 7:45.

below is the link from Children's.
www.childrens.com/tennis/

They want us to share about our story of coming from Hong Kong to Children's medical which is a great story but there is a center piece to that story. It is Jesus so please pray for us that in the few minutes we have that the 500 plus kids at the tournament will hear of how Awesome a Savior we have by providing the doctors at Children's to help us. :)

Hair is growing fast

2010-09-15T17:46:00.004-05:00

First, we want to apologize for not giving more updates over the last two weeks.

Second, to catch everyone up on Sarah, I will give a brief outline.

1. A few days after I returned home we had the usual blood test, but an unusual result. Her ANC (immunity) dropped to 290 which is like the old days. So we had to go back into lock down, which was not bad with my jet lag, and they took her off the daily chemo pills. The following week her ANC was back up to 1300 so they started the daily pills again. (they want to keep it at 1500, fyi-2000-2500 is normal.)

2. Her hair is growing back so fast. As you can see in the picture, we are all shocked how fast it is returning and it is so thick.

3. Yesterday was her monthly visit for chemo at the clinic. It went good but her liver profile is high again. It is around 10 times the normal level. They will keep monitoring this over the next few weeks. They will not stop the chemo pills unless she is 20 times the normal level so we have a ways to go. The only thing this is making Sarah feel a little sick to her stomach and not feeling as good as usual.

4. The physical therapy is going great! She is running, jumping and playing with much more strength and flexibility. You still notice that it is not normal, but the fact that she is back to doing these things is bringing a big smile to her face.

5. The contagious smile that God has given Sarah is affecting many people. One of them is Children's hospital and they have asked us again to represent them at a function. Later this month, we will not only be present at an event but they've asked us to speak for five minutes. Anne did a great job in handing the speaking part over to me. :)haha

Hopefully, we can do a family video for everyone to see Sarah's hair and to hear her talk about her new project. A hint is it is called "Fun Snacks for Kids at the clinic". She will share more later but she is working hard to serve the other kids at the clinic.

Take care and please keep praying. We need all your prayers.

Going Home

2010-08-29T10:02:00.004-05:00

I am sitting at the Hong Kong airport waiting to board my flight back to the U.S. This trip through Hong Kong has been good and bad at the same time. We love Hong Kong and try to wait patiently on God to bring us back, but when I look around and think about the good and bad times it is difficult.

The best way to describe it is the feelings I had when passing the hospital that Sarah was diagnosed with Leukemia. As my train went by the hospital my stomach turned in knots feeling the hurt, sadness and grief, but as I started to remember this is also the same hospital that Rebekah was born. So then I am happy and hopeful and excited about the future. By looking at one building I have these mixed emotions. Just sitting in this airport brings the same emotions. I remember the wait to board the plane in February. I was so nervous and worried about the "what ifs" of Sarah being in an airplane for 12 hours. Yet, I remember the other fun times we had as a family as we would travel back to the U.S. with so much excitement to see family and friends.

These examples are the best way to sum up my emotional roller coaster ride the past few weeks. So much happiness along with so much grief. I guess this is just life itself. As you journey through this world, you feel the highs and lows, but yet what is the meaning of all this. Why care, worry, show excitement/joy when there is so much pain? Simply it boils down to one thing. Where is my joy centered? If I try to just focus on things of the world which include my family, it is easy to fear and be filled with despair, but if I stay focused on the One who brings complete joy and hope then as I think of my family I find peace. This One is Jesus.

God has been teaching me about relying on Him, and I shared about it at Tung Chung Church last Sunday when I preached in Hong Kong. I is surely more coherent than these words I have written here because I am a bit tired at this time. haha To listen to it just go to http://www.tungchungchurch.hk/sermons.html and it is the sermon from the 22nd of August.

I pray God speaks to you as you listen.

Sarah's New Hat

2010-08-17T21:31:00.005-05:00

Today was Sarah's day to go get a chemo infusion at the clinic. But there were some fun things in store today too.

Caps for Children gives a cap to children with cancer, and they can get it signed by a famous person of their choice. Sarah choose the Duggar family since we have watched them some while in Hong Kong and since we have been back. Their youngest has been in the Children's Medical Center in Arkansas so Sarah has felt even more connected watching the show lately.

The cap arrived back today and just about the whole family signed it! Sarah was so excited. Some of them even put some verses under their names for Sarah.

Then after Sarah's chemo infusion she helped the hospital accept a donation from Capital One. Sarah was so sweet as she said thank you and took pictures with some of the hospital and Capital One employees. You can see one of those pictures above.

We are getting things ready for Jay's trip back to Asia. Even though we all hate to be apart, this is actually the best time for him to travel. Sarah is doing great and is at a very uneventful time in her treatment. We have been in this house long enough that I feel comfortable being here and with the day to day of life here. And we have so many of you that are close and always willing to physically help us and those of you that might be far away but are so willing to encourage us over long distance. I feel very blessed to be able to feel confident and secure about Jay's trip. Jesus has graciously kept Jay here until now and I am so grateful for that time. And Jesus has been building us up and preparing us to get ready for this trip for a while now. I undoubtedly know this is a good thing.

With Skype, Jay will still even get to lead our morning family devotions most of the time (before he goes to bed in the Hong Kong time zone:)

And we are happy that he will be able to bring home a couple more boxes of our things that are still in Hong Kong. We have lots a boxes and other stuff still there in the tiny apartments of friends - most of it is in one friend's apartment as she has gone beyond the call of duty as a friend to help us so much!

Sarah had such a good time getting her cap today and helping receive the donation for the hospital that she said in the car, "If I didn't have Leukemia, I wouldn't be getting to accept the donation and help the hospital!"

Sarah just sees Leukemia for all its benefits and that it is just a part of her life. I must say that her mama isn't always so optimistic. Sarah does still have her down times when she is sad that God picked her, but don't we all have those moments about some of the circumstances God chose to put in our lives to bring Him glory and us to know Him more. For the most part though, her childlike faith and joy in God is at the forefront as God continues to lead her and us.

Back to Work and Riding for Sarah Grace

2010-08-12T21:17:00.008-05:00

I had lunch with a friend today and he asked if everything was ok. He then said, "I have not seen you post anything lately." It then dawned on me that it has been a few weeks since I have written.

The main reason for not writing is I officially started back to work in August. Through many people giving and helping us, I was able to take six months off of full-time, full-day work to walk with Sarah through this process. I believe it helped me more than her but I am so thankful I was able to go to the appointments, chemo sessions, surgeries, blood counts, etc. As a father, you realize that you are the visible representative of God the Father in your little princess's life, so I wanted her to know not only her earthly father loved her but her heavenly Father loves her so much. So thanks so much for your gifts that allowed me to take a lighter load.

Now, I travel for the first time since Sarah's diagnosis. I will be in Hong Kong and Cambodia starting next week until the end of August. Please be praying for Anne, Sarah, Hannah and Rebekah. We have all enjoyed being so close over the last six months, and it will be hard for us to be apart.

On another encouraging note, above is a picture of Dave Elliott. He is riding in a race soon and one of the people he rides for is Sarah Grace. We are excited to see the stickers and to know he writes her name on his hand as he trains so he can remember her. It is also for a great cause and I have no idea how Dave is training in this 100 plus degree heat everyday, but God did make him special.

Finally, a short update on Sarah. She is doing great. They went to Gilda's Club (Cancer Support Community) today and had a blast. She has been able to spend time with another little girl who is battling Leukemia. We live in a different world where our 7 year olds are discussing their surgeries and the pills they have to take each night. It is a blessing for Sarah to have a friend like her. Sarah also went to see Hannah at gymnastics, and Sarah even went out on the floor and jumped on the big trampoline with a coach. Her strength is coming back fast, along with her hair, but she is still struggling with coordination, mobility, and muscle strength. So please keep praying for her and us.

The best way to explain our current situation is using an example of running in a long, long race. (At least this is what I've been told!) At first your breathing is fast and hard with the first few miles the hardest, and then you set a good pace and your breathing slows and you feel much better but you are still running a race. This is how we feel at this time. We are past the hard part, but we are still running a hard race - so we continue looking to Jesus for peace and calm.

Camp! Camp! Camp!

2010-08-04T13:38:00.004-05:00

We have caught up on laundry, emails and sleep and not necessarily in that order. We were so excited to be going to camp and yet we had no idea what God had in store for us.

The counselor who had requested to be one-on-one with a camper and who was then assigned to stay with Sarah all week was the daughter of a family at our church, Bent Tree, who has helped us so much. We hadn't known them personally, but when our list of needs came out in the church as we were moving back, this family answered the call in a big way. And now their amazingly gifted godly daughter was Sarah's counselor. Of course, my heart was at ease, and more importantly my nerves, so that I was able to enjoy my time and focus on what God had for me while my children were being taken care of and taught about Jesus.

Block Party (Sarah's counselor's camp name) was so diligent and wonderful at her task of helping Sarah that by the third night, Sarah was dancing on the tables with the other girls in her small group! And the next day she came back from her class and told me she did the zip line! We saw lots of glimpses of the the pre-cancer Sarah, and it was encouraging. Sarah was on steroids for some of the camp and she was on two antibiotics and her daily chemo plus her 1 time a week 9-pill chemo. She was upset at times about having to fast two hours before pills at night and also about wearing her leg braces (which we didn't enforce but a little bit a few nights). Poor Block Party had to endure a bit of 'roid rage' as the steroids zipped around Sarah's body, but all in all, I was amazed at the great time God gave us. Even with Sarah's shyness about her bald head, God took care of that by putting it on the hearts of the girls and counselors in her small group to take their group picture all wearing head scarfs and not showing their hair!

Hannah jumped right in to her group making friends easily with everyone and winning the hearts of her counselors. Rebekah had her own class called the Rollie Pollies, and she got to go swimming and ride in the wagon. I also heard that she talked a lot and was such a happy baby.

Jay and I experienced such renewal and help in our marriage during the couples' sessions. And two of the nights were date nights, childcare and all!

And God did even more to confirm his hand in our lives and future. When we arrived at camp and went through the registration lines, we ran into a family from our home group at Pantego Bible Church 8 years ago! And they said another of the families from that group were there too! We were able to see meet all their children and renew our friendship. We were so excited to see that we all hadn't changed much! :) This home group has been one of the biggest blessings to us as they sent a love offering to us when we had Sarah as we didn't have maternity insurance at the time. And this same group that helped pay for Sarah's birth, also sent us a love offering complete with toys and crafts to Hong Kong when Sarah was diagnosed with Leukemia. By being with them at camp all week, God clearly reminded us of his provision and care for us through the family of Christ!

I could write many stories of God's grace to us throughout the week - maybe in the posts to come. Today, God's grace to us came as we had to get Sarah's blood checked today and her counts were right on target - wanting to be kept lower than normal so as not to allow her body to make any Leukemia cells. Her ANC was 1495 - perfect!

Going Camping

2010-07-24T22:44:00.002-05:00

Sorry for not posting this sooner, but we wanted to wait to make sure everything was clear for Sarah. Again, our Heavenly Father is merciful to allow Sarah's numbers to go up fast and be cleared for chemo on Wednesday. This has allowed us to accept the blessing Pine Cove Camp has given us with a week long family camp. (There website is http://www.pinecove.com/)

They are going to take good care of us and we have already talked to the hospital in Tyler to make sure that our doctors at Children's Medical will have their direct numbers in case Sarah develops a fever. Pine Cove has also assigned Sarah her own personal caretaker to hang out with Sarah as the other kids do things that Sarah cannot do, i.e. swim, run etc. Sarah is excited to get to know another older sister in Christ and spend time doing crafts and horseback riding.

For Anne and I, we also get a huge break with having renewal time for our marriage with seminars from a Family Life speaker. So this blessing is huge and we are so excited. I can't promise another video, but we will post pictures. :)

Incredible Weekend

2010-07-20T20:49:00.003-05:00

Below is a video that I hope you enjoy. It is amazing how God provided by great people at the Gaylord Texan Hotel and Make-a-Wish Foundation.

Sarah will start maintenance tomorrow, if her numbers are good. Please be praying for her ANC to be above 750. If so, she can have her chemo, spinal tap and infusion. If not, it will be delayed a week which will cause us to miss a great vacation. (Anne is still going to tell you once we know for sure.)

Anniversary

2010-07-15T07:01:00.003-05:00

Today marks the 6 month anniversary of Sarah's diagnosis. As I think back to that afternoon... I had just driven back to the Hong Kong hospital (where Sarah had already been for three days) and the Chinese doctors were taking me and Anne into another room to give us test results- I get nauseous all over again. (the picture is of Sarah in the hospital on the 15th of Jan.) In a way, this all feels like a horrible dream and it has been a nightmare that has lasted six months. There are mornings I still wake up thinking, I can't believe my princess has cancer and is going through all of this suffering. It is in those times that I have the sweetest conversations with my loving savior, Jesus. Lately, I have gained strength from realizing that even though Sarah is battled with health problems and a life-threatening disease that can reappear at any time, we are rich in Jesus. The blessing is watching Sarah continue to mature in her faith in Jesus and grow at such incredible ways. In seeing this, it is a reminder that Jesus has called and saved her for an eternity with Him. It is a reminder that faith is about believing in things not seen instead of what is seen. It is a reminder that many fathers are struggling with perfectly healthy daughters who are spiritually dead. The human, narcissist side of me, wants both. Perfectly healthy and spiritually alive, but in the end, our reliance on God as our strength comes from not dwelling on past or present circumstances, but yet keeping our eyes fixed on Jesus and the hope that we have in spending eternity with Him. The girls bought me the new biography on Dietrich Bonhoeffer for father's day. I just finished it and was so blessed by how through God's grace, Bonhoeffer kept an eternal perspective even when faced with certain death. The doctor who oversaw his death at the concentration camp gave testimony of this grace of God. Until the moment he stepped to the gallows to be hung by the Nazis, he was praying and finding strength in the Lord. The doctor said that in all of the deaths he has witnessed, which I was pretty sure it was many, he has never seen a man so submissive to the will of God. Wow! what an earthly testimony.
As our family tries to forget the past events of today's anniversary, my prayer for us is that whatever God sends, we glorify Him by keeping in His strength and submitting to His will so the glory of Jesus will shine. In that is true peace and joy.

Prayer request is we have a huge weekend planned to celebrate the end of intensive treatments and Sarah's wish being granted by Make-a-Wish. The problem is Sarah still has low immunity resistance, so any moment, we could be back at the ER. Please pray for protection so she can feel the love of Jesus through those who helped with this coming weekend.

All Cooped Up

2010-07-10T16:17:00.003-05:00

This past week we have been homebound since Sarah's numbers have been so low. And of course there is never a dull moment with two other family members having red rashes show up too!

Rebekah developed a rash of tiny red blister bumps below the back of her head and on her shoulders and a little near the inside of her wrists. I is acting like heat rash and she did have a pretty sweaty naptime that day, so that seems to be under control.

Jay's turned out to be poison ivy. We searched the yard and the internet and figured out that it is growing in the back corner by our fence and by our trashcans. I snapped a few pictures of it for your future reference.

Also, with all the rain, the grass grew so quickly and the mosquitoes and other biting insects starting getting in our house when someone went out the door. All three girls have several bites now, but our 'Grass-cutting Angel', Brian, came today and now all the grass is short and pretty. So we all got in the car and rode around while the girls watched Gigi -God's little princess and drank Jamba Juice. When it started raining, poor Brian, we thought it was safe to head back home.

Sarah is feeling sad again about not having a 'normal kid life' and being jailed in the house. But she did get a new book in the mail and was extremely excited. It was called "Chemo, Craziness, and Comfort". She kept reading us all the chapter titles with such enthusiasm. I did have to tell her to stop though as I am well-read now on all types of childhood cancer, and it made my stomach turn listening to Sarah try to pronounce the list. So she moved on to the chapters on Eating, Pets, and Surgery - surgery being the most interesting she said.

Looking forward to days of freedom...

Feeling good but low blood count

2010-07-06T21:59:00.007-05:00

God has been so gracious to us over the last few days. Since the last chemo treatments and shots, Sarah has not been sick. She went to the clinic today for her blood test and Hannah went too. Hannah decided to get her blood taken too to support Sarah (and also just to see if there were any 'germs' in there. Our friend, the phlebotomist, said Hannah's few blood drops looked fine and that Hannah was so brave!)

Sarah's numbers were really low as they should be with all of the chemo she has received. The doctor told us to take it easy and to stay indoors for the week, but we have to go back and check her blood in two days. The doctors anticipate Sarah needing a transfusion on Friday since her counts are still on the way down. (platelets 20, hemoglobin 9 and white blood count(neutrophils 615).

We have some really exciting things happen over the last few days that is really going to make July special. Anne will update you soon on the specifics, but I just wanted to let you know your prayers are being heard by our gracious Father. We have been struggling as a family with being isolated and it all seems to be taking it's toll. We have been praying for opportunities to get away from the house and experience some fun family time. We will be doing that this month!

I also wanted to thank my parents. They left last week after staying about five weeks with us. It was not easy for them, especially with my dad suffering from tendentious in his foot, but they were troopers. We were all so sad to see them leave. When they first arrived, they walked into chaos with Sarah going through almost two weeks of hospitalization and a biopsy surgery and doctor appointments. Grandmama and Granddaddy, you are very special people and we love you and thanks for the sacrifice you made for us. The girls keep saying how they wish you could live here all the time. Thank you.

happy to say goodbye to June

2010-07-01T09:12:00.004-05:00

The best way to sum up the month of June was Sarah's comment to me the other day. She was having a hard day and wanted me to lay down with her so she could take a nap. We were talking and she said, "Daddy, I am tired of being a special girl; I want to be normal again."

June has been a very difficult month for all of us. Sarah has endured many different types of chemo, we have two more days of shots and a week of pills to go in July before starting maintenance, we've had multiple hospital/emergency room visits, a major surgery (over 2 hours), constant nausea and other horrible symptoms. To add to all of this, the entire family is having to say goodbye to our home in Hong Kong.

Anne and I made the decision to not renew our lease in Hong Kong which meant we had to move everything out by June 30th. First I want to thank all the wonderful friends (more like family to us) who endured so much stress and patience with us to move everything out. Many nights Anne was up late on skype trying to see what we wanted to store, sell or throw away. This entire ordeal was so difficult as we were already emotionally emptied by taking care of Sarah and then adding having to let go of most of our possessions and our home in Hong Kong.

In the midst of all of this, Anne's aunt passed away and that gave us more grief as Sarah had developed a connection with her because they were going through chemo together.

So we start July very tired, but with hope. Hope that God will continue to be faithful in our lives by providing new mercies each morning new that we may endure until the end. As we go through this, we continue to ask- "What more do you want us to give up Father?" We are battling feeling like Jonah and complaining to God as He has covered us with a huge leaf to protect us from the sun. Although we have lost our home in Hong Kong, we have gained a wonderful place in Dallas. His hand has provided all that we have needed and in the end, He has only created in us a greater longing to see the glory of Christ. We desire that in all He allows or directs in our lives, we will proclaim like Paul in
2 Corinthians 4:16 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Thanks again for your prayers. Sarah has so far not developed a fever from these shots, which is the major side effect, so we praise God for His blessings each day. The power of the Holy Spirit is continually amazing me with the spiritual growth and maturity of Sarah. Yesterday we took Rebekah for her first haircut and Hannah also had her's cut. We did not know how Sarah would respond since she is completely bald (she also has lost most of her eyebrows and eyelashes). It was amazing to see her smile and watch as she stood next to both her sisters laughing and enjoying the moment. How I hope to portray that type of goodness and gentleness in my life. That is truly only by God's grace.

One Down, One to Go

2010-06-27T21:36:00.004-05:00

Last week was a difficult one. It started with a 10-hour day at the clinic with Sarah having a spinal tap then a couple of infusions followed by routine IV hydration. The spinal tap took twice as long since the doctor couldn't get the needle in the right place to get fluid out so they tried twice and finally got it to work. It took a long time for Sarah to wake up after the procedure, and she has had a pretty sore back since then. Sarah was so happy to have her friend, Alex, come to the hospital to help pass the time. And as you can see in the picture, the girls did some great crafts that Kristen, the Child Life specialist, brought to the room. The girls also got lollipops from Daisy in the coffee shot in the lobby - those always seem to bring big smiles.

I had to go back the next day with Sarah to be trained on giving her a shot so I could do the shots at home. She has to have shots four days in a row (same for next week). So, I have had to scrub up and inject chemo into Sarah's leg this week. It burns her going in so she cries until I can get it all in and then stop to massage her leg. I feel just awful and really don't think that I will be able to do it again next week. I am still devastated by last week and the pain in my heart is still so fresh.

I am so happy that this is our last phase of intense chemo. We are all struggling with being secluded and anti-social and bound by medical visits. Even though the upcoming 2-year maintenance won't be completely easy, I have hope that we can enter into social life again as we are in such need of fellowship and friendship. We have seen so clearly that this is impossible to continue to go through without support of those around us.

This phase has gotten Sarah down, and she has been in tears saying she doesn't want to be 'special' anymore just a normal kid. We have had all the talks about how chemo is such a blessing, and since it was discovered, it has helped cure so many. Even as I say it though, I know that I would have fallen apart way before now. Sarah really has been trusting God from the beginning and it has encouraged me to see it.

Yesterday she asked Jay if she would have gotten Leukemia a long time ago, would she have died. Jay said that yes, she most likely would have since before the 70s only 14% of kids with Leukemia survived. Hannah heard the conversation and got really upset saying so Sarah wouldn't die. Hannah didn't grasp what they were talking about. She was just so upset to think that Sarah could die at all. None of us really allow ourselves to think about losing Sarah. It is just too possible to even let our thoughts go there for a minute. I know how Hannah feels.

So we continue on, even in this harder time we find ourselves in right now. Thank you for lifting us up in your prayers, and we pray and ask God to help us continue this journey bringing Him glory.

video update

2010-06-22T20:34:00.002-05:00

Stitches and Dim Sum

2010-06-17T09:19:00.003-05:00

Some of you have seen the pattern - no blog update means we are enjoying a rest from chemo and side effects. We haven't written a blog update in 7 days, and we have been enjoying every one of those days without chemo. But we have still had three doctors visits to take out the stitches from the biopsy on her red bumps, take off her cast, and check her blood counts. There is still no definitive answer on what the red bumps are. They are fading though and no new ones have sprung up, so the doctors are just happy that it wasn't a bad infection of any sort.

Her stitches on her backside and leg are healing, and her finger is cast-free but pretty swollen with a big incision and a little pain. Sarah finally got the right sized sling and is enjoying the novelty.

After one of the appointments this past week, Sarah really wanted some Chinese food. She hasn't really had any since we have been back. So we went to a Dim Sum place and the people working there were from Hong Kong - Kowloon actually which is on the subway line from our house there. Sarah kept saying how happy she was for the food and the chopsticks and the hot po lai tea. Rebekah might have eaten the most as I had to keep stuffing pork bun and steamed shrimp bun into her mouth with my chopsticks.

Now we are getting ready for next week as we start the last round of the intense chemo for the next month.

I have just been going through the motions of cleaning and cooking and errands and such, not able to plan anything or even schedule a visit with anyone as we can only take each day as it comes right now. It has started to effect my spirit as well. I find myself just going through the motions of church and singing and reading the Bible, not really and truly fellowshipping, praising and worshiping. Don't know why I am in such a place. I do want to be excited again about praising God and longing to hear Him speak to me through His word. From past experience, such blah spiritual feelings stem from a self-centeredness. Funny how I am one of billions of people on a tiny planet in one of thousands of solar systems, and I still have a problem of making myself so important in my thoughts. I need a renewal in thinking, once again. God is the beginning of ALL things, everything. And I am truly grateful that He called my name to know Him and to search out the truths He has for us on this earth. It really is an exciting life if you take time to ask Him for eyes to see the true reality, to grasp the reason for our daily living here, to walk by faith and not by sight. I need to make the time to do that right now. Without it, all the errands and the cleaning and the cooking and the motions lose their meaning.

Hannah's Ballet Recital

2010-06-09T21:22:00.007-05:00

Thank you for your prayers. Hannah enjoyed her 'first time ever on stage,' as she calls it. We might have uncovered a heart's desire and a talent of Hannah's. She really does love to dance and is actually really good at it. And it is so encouraging to me to hear her tell anyone who asks that she dances for God and He even sent a costume for her to be able to dance on the stage!

Sarah also felt good enough to attend Hannah's recital! We were so excited to enjoy the experience as a family. We even had both sets of the girls' grandparents there and their aunt, uncle, and four cousins. It was such a blessing.

During this next week, Sarah will get her stitches removed from the biopsies on her red bumps. And she will get her cast off if all looks well on her finger. We will also go get her blood counts checked to see how she is doing with the chemo. But she will not get any more chemo this week, which she is happy about.

The hard part starts on the 23rd now that it was delayed for the finger biopsy and the chicken pox scare. And although it will be one of the hardest chemo phases yet, it only lasts a few weeks.

I am praying even now for the strength only Jesus can give.

Sarah is Home

2010-06-08T09:56:00.002-05:00

Sarah was able to come home yesterday afternoon after receiving her chemo. Please be praying she can keep hydrated so we don't have to make a trip back to the hospital.

The initial reports came back and she does not have chickenpox. We will know exactly what it is in a few days.

Another prayer is that Sarah feels good tomorrow to go watch Hannah's recital. It will mean a lot to all of us.

Blessings,

Jay

In the Holding Cell

2010-06-07T11:46:00.003-05:00

We are still in Children's downtown, and Sarah is still in isolation until the pathology comes back to see if she is chickenpox free. The negative pressure isolation room opened up on the Oncology Ward, so we have been moved to a wonderful, new room with a great view of downtown. It has done wonders to lift our spirits. There have been a few traumatic events during this stay, and we are still learning the truth that "it is not the easy or contented life that makes folk hunger hard after the Lord Jesus." Even so, it is hard to surrender my mother's desire for my child to be comfortable and at ease. But we continue to help point Sarah's little heart to God even as we struggle at times. Most of the time it seems Sarah's heart is the one so near to God as He draws her throughout this journey. Faith like a child is so wonderful to watch.

One the pathology report comes back clean, Sarah will get more chemo today. This is the medicine that makes Sarah pretty sick for awhile. We pray she is able to see Hannah in her big stage debut on Wednesday.

Thank you for all of your prayers and encouragement.

Building Endurance

2010-06-04T20:31:00.007-05:00

Wow! what a day!
Ok, a little before 8am, Sarah and I read the following verses: James 1: 2 Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.(NLT)
Sarah and I thought God really wanted us to be perfect and complete with all of the trials we are facing.

At 8am Sarah had her first ride in an ambulance. It was not just a regular ambulance but one that was specifically for kids. She had a flat screen to watch a movie as we drove to the other hospital. She loved it!

As the time neared for the biospy, we were tested again because the doctor was delayed almost 2 hours. Then the surgery lasted over 2 hours. I read to Anne a verse from Isaiah 26: 3 You (God) will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!
4 Trust in the Lord always,
for the Lord God is the eternal Rock. (NLT)

Ok, I know you are waiting. Our God was merciful and the tumor is BENIGN! - not cancer! With all that is going on, this is such a needed encouragement. It is still a nasty tumor that will require us to see the specialist every three months for two to three years to make sure it does not come back. The major problem is it developed on her growth plate which could cause her finger to not grow correctly. (She now has her first cast.)

After Sarah woke up, they transfered her back to downtown. Anne is with her tonight. She will probably be in the hospital until Monday or Tuesday until the biospy of the bumps prove it is not chicken pox. So this weekend Anne and I will switch out.

In all of this, I am reminded what a wonderful best friend I have. A wife is truly a blessing and a gift from God. Days like today draw me more in love with my amazing wife. Over 80% of marriages end in divorce for parents with children with a serious illness. The reason is there is not a middle ground. You either come together or you grow apart. Thank God for using the Spirit to draw us together and even give us a few laughs as we waited on pins and needles for the doctor to give us the results. Anne was sweet to try to get my mind off of the situation by telling about the Amish fiction novels she is reading. Then the nurse took us to a consultation room and it was not very big and I started feeling dizzy. She made sure I opened the door and moved my chair close to the hall so I would not pass out. (I do not like small spaces especially as high as my blood pressure was!) I know these are not huge things, but they are times we share. I could not imagine going through this without my best friend and wonderful bride. So tonight we praise God for his answer to prayers, and we thank God for our marriage, our children and most of all His grace to trust Him with the future.

Admitted Downtown

2010-06-03T20:42:00.003-05:00

Sarah was admitted downtown today since she developed about 20 red spots on her upper legs. No one is able to be sure of what it is, so they are being cautious since it could be chickenpox, which would not be good for her condition. It could be other viruses as well or another type of infection. they did a biopsy today and cut out two of the raised red spots to see what it is, but that takes 24 hours. We are still hoping to get the biopsy done on her hand tomorrow at 10am (which was already scheduled at the Legacy location so she might have her first ambulance ride up there and then back down to Dallas). This biopsy will require putting her out. She isn't so upset about that now since they didn't put her out to cut off the two bumps today. But she did so very well with minimal tears. She is just so strong.

Sarah is getting a bit down though just having to endure yet another setback. Even in the midst, we are seeing God's hand. Yesterday we got a few phone calls and somehow ended up with a few meals brought over in one day. And with one of the meals, there was some cash in an envelope. Now I understand why that happened - since we will be in the downtown hospital for several days now and Jay and I will be trading off being there, and Jay's parents are here to help out. So the meals will cover those days. Also, we had to pay tolls and parking and food and such today since we first has to go to the Legacy Children's hospital and then downtown to Dallas Children's hospital. Now we know why God sent the money, too! Thank you all for your faithfulness and service.

(Although next time several meals and some money come in at one time, we might just go ahead and pack a hospital bag!)

Another Change

2010-06-02T13:41:00.002-05:00

We went to the hospital today to have Sarah's chemo and start her week of steroids and also to see her regular cancer doctor back from vacation. Dr. Appell came in to the room saying how she goes on a vacation for the first time in 1.5 years and Sarah goes to the ER twice, gets hospitalized, and gets a bone tumor. She said she was never going on vacation again. She was glad to be back and really made us feel at ease with how she took the reigns aggressively and wanted to speed up the process. So, we didn't end up getting chemo today or steroids since whatever the tumor turns out to be will affect how we proceed. So she is trying to get the biopsy/surgery moved up to tomorrow or Friday. And Sarah might have to be admitted just to be able to be ready at any time to go into the OR when there is a spot. We are waiting to hear back today from Dr. Appell. She feels fine with delaying Sarah's treatment a couple of days, but not for much longer, so that is why everything is rushed.

We will let you know how everything unfolds.

Also, some of you have asked about our Care Calendar and here is how you can find it and log on.

http://www.carecalendar.org/

The logon info is ID # 34875; Security code: 5891

Thank you for your continued prayers and encouragement - which, I know, sounds so cliche. But I can't imagine this journey without it!

More Information

2010-06-01T21:07:00.003-05:00

Through God's wonderful grace and mercy, we were able to see the bone tumor specialist today. With yesterday being a holiday, it was going to be hard with referrals, etc. for the insurance, but everything worked out for us to go to the appointment.

It looks like they will perform the biopsy on June 14th. This is the only new information. The specialist said the same thing as the other doctor from this weekend so nothing new on the issue. They have to wait until Sarah finishes her 7 days of steroids that she starts tomorrow, and then wait a few days to get them out of her system. They will do the biopsy, and then if it is benign, they will cut the tumor out and repair the hole. If it is malignant, then the cancer doctors will determine what steps to take.

Please pray that the new nausea medicine works as she has chemo again tomorrow. We don't want to be back in the hospital with dehydration again, so she has to be able to keep liquids/foods down.

God has been filling us with strength and peace. We were actually having fun at the doctor's office today. It is great to see Sarah getting her strength back, and she had fun playing with her mama and daddy. She has also received an extra dose of happiness with her grandmama and granddaddy coming to stay with us. Jesus' love truly does endure forever and ever.

At Home for Five Hours

2010-05-30T21:03:00.004-05:00

One of the favorite movies for Sarah and Hannah is Pollyanna. In the movie, the little girl Pollyanna teaches everyone the true meaning of thankfulness by bringing out the good in all situations. We are having to copy Pollyanna's attitude by trying to think of what we need to be thankful for because we are a good bit tired and discouraged.

Sarah was discharged from the hospital today at 2pm. We were finally all home and everyone was exhausted so we had long naps. Sarah woke up at 5 and she was running a fever. So in five short hours we are back at the hospital (emergency room). Hopefully we will go home soon once she finishes her antibiotics, but we are still concerned that this virus/cold/infection keeps rearing it's ugly head. They are doing more test tonight and hopefully something will show.

As far as her finger, we are going to see a tumor specialist on Tuesday. He is working with an orthopedic doctor and he will talk to us on Tuesday and plan the biopsy later this week or early next week. None of the doctors are confident they have seen this type of tumor/lesion before and so they are not making any commitments. I've been praying that God bring us new mercies each day with encouragement through the doctor's words and we have felt that. All of the doctors do not believe it is a new type of bone cancer. (the worst case scenario) The tumor specialist and orthopedic doctor both feel it is a benign tumor that is more aggressive than others. (best case scenario). The test to our faith is they are not ruling out the a rare, really unprecedented possibility that the leukemia has come back in this type of bone tumor. Our Heavenly Father gave us encouragement with this issue with our hematologist doctor in the hospital taking us through her blood counts to show us that nothing is really showing a relapse. Of course, we will not know until we go for the biopsy.

We ask you to continue to remember Sarah as she will have another treatment on Wednesday, start steroids and then have this biopsy. Even if it is a benign tumor the removal will be pretty hard surgery to make sure her finger continues to grow correctly. So we sit at the emergency room remembering we are to be thankful in all circumstances and as we look to the glory of Christ who has felt pain as a human and as Hebrews tells us that understands our pain, we find thankfulness.

I am exhausted so hopefully I did not ramble too much. Anne will read this and edit it soon. :)

First Hospital Stay on This Side of the Ocean

2010-05-28T21:36:00.002-05:00

When we went in to the clinic today to follow up on the ER visit, Sarah had some signs of dehydration and she was still vomiting quite a bit, so they decided to admit her after the MRI was finished. She did great in the MRI which turned out to be over an hour. Jay stayed in the room with her at her head as she was in the tube with earphones on listening to her music. We had thought there would be a movie to watch, but there was only music. Jay said she was so brave and did everything she was asked to do even though she started off a bit teary-eyed.

Then around 5pm, she was admitted to the hospital. The good news is that her heart rate is already coming down as she is getting fluids, but she is still vomiting. If we get that under control, she should be able to go home tomorrow. A fellow mom who has a son with Leukemia recommended a new anti-nausea drug to me and they are trying it out now to see if it works for Sarah.

The bad news is that the MRI did show that she has some sort of tumor. Although this news is hard to hear and threatens to steal our hope and trust, we are still by God's mercy able to persevere at this time and continue to look to Him and no where else. Pray that He holds us in that place.

Tomorrow the bone doctors will come by and check out how they will biopsy her hand (take a piece of it out to test it) so we can see if it is malignant cancer or benign. The doctors seem to think there is more of a likelihood that it will be benign and something that would just require surgery and some recovery and that's it. There is a chance it could be the Leukemia or another cancer, but both of those would be very rare.

I am still able to pray in hope that it is not cancer and that this test of our faith will soon pass.

Thank you all for praying.

To the ER we go

2010-05-28T08:13:00.002-05:00

Last night Sarah's temp. started climbing and by about 1am it reached the magic number where we have to call the hospital. The doctor said we needed to bring her in since she is in such an intense round of chemo. Jay took her while I stayed home with the others.

They got home this morning at 6:30am and the diagnosis was a possible urinary tract infection. Sarah is still running a fever but they gave her IV antibiotics and sent her home since her blood counts were so high. Which of course makes me uneasy thinking the high blood count is due to the Leukemia cells in her hand, which is why we have to get the MRI today.

I am about to go to my doctor's appointment to hopefully be done with this staph wound and also to try and convince them to let me stop the one antibiotic that is making me so nauseous and only take the other one.

Then we will probably have to go on into the child cancer clinic at the hospital to see further what is going on with Sarah. And the MRI is still at 3pm, but we found out it would take 2 hours and they don't have a slot for sedating her. But she hates being sedated so she says she has incentive to stay really still.

Jay is exhausted and went straight to sleep. Sarah slept some in the ER so she is wide awake. It is never good when the two adults are very sleepy and the three kids are ready to go:)

Since Sarah was at the ER this morning and had to have her port accessed, they agreed to keep the needle in and the tube attached and just tape it to her since they will use it this afternoon for the MRI! She is very happy not to have to get poked again today.

A short update

2010-05-27T09:13:00.002-05:00

Thanks so much for your emails and prayers. They have been so encouraging to us and we can feel the God of Peace, which transcends all understanding, as we guard our hearts and minds in Christ Jesus.

Yesterday, we had three doctor appointments and we do know more info:
1. Anne went first and the staph infection is responding the right way to the new antibiotics. She has to go back on Friday and hopefully they will be able to take out all of the "stuff" they have inside the place they cut out. We do know it is the antibiotics that is making her sick so she has another week to go with that.

2. I took Rebekah to the doctor when Anne was taking Hannah to her last ballet before the recital. Rebekah has an ear infection and she started her antibiotics yesterday. She is still not happy about losing her morning time with mommy but she is doing better.

3. Then I took Sarah to her treatment while Anne needed to stay home with Rebekah. Sarah endured another round of chemo that made her sick almost immediately. She vomited a few times last night but this morning she is feeling better.

4. Sarah's MRI for her hand is tomorrow at 3. Please take the time to pray for her because she will be in the tube for about 45 minutes. Anne and I will be able to sit at her feet so hopefully she will feel secure with us there. She has to be completely still for the entire process so that is a challenge for her but it is better than sedation. We don't know if we will have the results immediately or if we will have to wait until Monday. We continue to rest in Jesus and cast our burdens to Him. His grace is truly sufficient. This doesn't mean that Anne and I are going about life as normal, but it does mean that each time the horrors of the "what ifs" come to our mind, we call on His name to protect our hearts and minds. In this way, His grace is sufficient.

Blessings, Jay

A Mess

2010-05-25T17:19:00.005-05:00

This past week has not be a good one for us. Last week's treatment was very hard on Sarah. We've been having to give nausea medicine every six hours to keep her from being sick. Along with this she is taking steroids so her stomach feels a little nausea and hunger at the same time. She asked me the other day in a very pitiful voice, "Daddy, have you ever felt nauseous and hungry at the same time?" I said, "No, I can't say I have ever felt that before!"

The weekend was not any better as Rebekah has picked up another cold. We think it might just be allergies, but she has a fever and a horrible cough. On Sunday, Hannah started feeling sick with a cough and a low grade fever. I finally had to force Anne to go to the doctor because of what we thought was a spider bite on her back. It turned out to be staph infection so she had to have it removed and then yesterday, she developed more bumps which means she could be "colonized". She also is fighting a horrible case of nausea. To add to Rebekah's woes, Anne is being forced to ween Rebekah because of the strong antibiotics she is having to take for the staph infection. So little Rebekah is sick and being weened at the same time. I must say, the Clark house does not have many happy people. We are trying to keep our joy through the fruit of the spirit in all of this.

Yesterday, another storyline developed which is tempting us to stress and be very anxious. After Sarah received her PEG shot (this is when three nurses stand around Sarah and give her three shots at one time), we talked to the doctor. Last week, Sarah formed a little bump around her left index finger. We showed the doctor and she sent us to have an X-ray. The X-ray shows something is not normal but they cannot tell if it is just an odd-looking fracture or possibly something much worse. There is a probability the leukemia could come back in her bones, so they cannot rule out it could be cancer. This is also another side effect of the chemo - other cancers. She has another treatment tomorrow, and then she has an MRI on her hand on Friday. I know it sounds strange, but I am really hoping it is a fracture. Please be in prayer for us at this time, especially Sarah. She can sense from us when something is not good, and it is making her nervous also. Pray for peace, that only our Savior can give, and for there to be nothing wrong with her finger.

We praise God for you sharing our burden with us.

Blessings, Jay

A Miracle

2010-05-19T21:34:00.006-05:00

Today was a 6 hour hospital visit in which Sarah got lots of blood drawn, a spinal tap procedure and two IV chemo drugs. She was groggy for a long while after waking up from the procedure and tonight has been sick a couple of times. We started steroids again tonight for a week, and she wasn't able to keep all of them down tonight. But she tried so hard and really did give it her best even with feeling so sick and tired. We continue to be very proud of her.

The pictures (click to enlarge) are of the Little House on the Prairie play that our family went to on Sunday night at the Fair Park Music Hall. A wonderful friend asked the Manager of the Summer Musicals to please donate some tickets for us and he donated four for our family - the best seats we have ever had! He even asked us to come to the Executive Lounge during intermission to meet Sarah. He gave her a beautiful children's book about the theater and Hannah was beyond excited to get Root Beard (Beer). The play was just wonderful, and we all had a great night.

During these past two weeks of rest for Sarah, we were also able to finally meet another girl Sarah's age who has Leukemia and is a year ahead of us in treatment. I have been emailing her mom from the beginning and she has been a great help and source of encouragement and info. for me. It was so nice to get our families together. Sarah was happy to meet someone going through similar things and I even overhead them playing doctor at one point and of course they were treating everyone's Leukemia:)

Two weeks ago, I blogged about that horrible day at Hannah's ballet when the teacher didn't call me and they class was trying on their costume's for the recital that day for the whole class time and Hannah doesn't have one since we joined too late to order one and too late for Hannah to be in the recital. (That was the morning that I was taking Sarah's temperature every five minutes because it was rising and actually we went straight to the hospital from the ballet studio - not a good day.) Well, when we were at the hospital today, the dance studio called me while my father was with Hannah at her ballet class. She assured me that Hannah was just fine, and that she was calling because the last shipment of costumes came in and there was an extra one. I told her that I had talked to another mom last week who had joined in Jan. and hadn't received her costume yet so it was surely hers. Then the studio called me right back and said that it did belong to that other little girl but that there was STILL an extra one that they have no idea why it was there. Well, we knew right away how it got there - God was blessing a certain little girl who has been so good about not being able to be in the recital and who has still practiced her dance faithfully and been so attentive in class and nice to her classmates! So, in five minutes today we have added a major event into our already crazy life - a dance recital at the Eisemann Center. Hannah was without words when Sarah told her the good news, and we are now praying asking God to take care of the details and doing so with so much faith, a might add, as we have just witnessed Him doing a miracle in Hannah's little life.

We are so thankful to God for continue to prove Himself to us when we need it most. He is a loving God.

Seems there is a delay in getting insurance to approve Sarah's leg braces so we are looking a longer wait than expected. We are trying to remain in the peace that God has this under control and it will work out as He has planned. We are still awaiting approval for the physical therapy, but the therapist is able to come for four free visits even without insurance approval, and Sarah is already doing so well!

Thank you all for your prayers and all the meals we have received over the past few months and all the encouragement and practical help. We are able to see and feel God caring for us through you.

Prayer Request

2010-05-17T09:28:00.003-05:00

It has been a wonderful couple of weeks between treatments. Anne will update the blog soon with fun pictures of some of the events we were able to attend. Our little break comes to a stop on Wednesday with the beginning of the next stage of the treatment. Below are dates to keep in mind so you can be praying specifically for us.

Chemo:
May 19th- 8:00 AM- Spinal Tap, 2 different IV infusions.
May 19th to 26th- Daily steroid pills! Not excited about being back on steroids.
May 24th- 10 AM- Chemo shot.
May 26th- 10 AM- 2 different IV infusions.
June 2nd- 2 different IV infusions.
June 2nd -8th- Daily steroid pills.
June 9th- check numbers to see if she can continue to the second part of this treatment.

Physical Therapy:
May 18th and 20th- Start physical therapy at home on Tuesday and Thursdays for six months. Please be praying for all of us as this is going to be a hard road. Sarah's assessment showed her walking/running/flexibility is to a 4 year old level so we have a lot of strength to build up.

Ankle braces- we should receive the braces early next week. This will be another thing people will look at and bring more attention to her. (Not the fun type of attention.) Please pray she understands the braces will help her gain her strength in her ankles faster.

Video Update

2010-05-11T13:04:00.002-05:00

Sharing the Suffering

2010-05-03T20:43:00.002-05:00

Today, Sarah had her final treatment for the Interim Maintenance stage. She did a great job. These days our morning family devotions have been on the fruit of the spirit, and this week is joy. This morning before we left, we talked about one way to find joy in hard times is to remember God's blessings in your life. We did that today and God blessed the time with joy. Anne had one of her dear friends come by and bring us breakfast at the hospital since we had to start the day so early. She sat with us during the IV fusion and it was a great time catching up with her. God answered our prayers and sent joyful blessings throughout the day.

After Sarah's nap, we went to the barbershop for me to share in Sarah's sufferings. As you can see from the picture, it was a makeover for me. As a father, watching her suffer physically has been so difficult. One of my biggest responsibilities is to protect her. Instead I am usually holding her as people stick her with needles and inflict all different types of pain. I cannot stop it from happening or share in that part, but I can find other areas to encourage her. One of those is by going bald with her. Of course, I was already working on that before this happened. :)

We received the protocol for the last part of the intensive treatments called delayed intensification. As the name says, it is going to be extremely intense. She starts on May 19th and over the 56 days, she will have a mixture of 7 chemo drugs and 1 steroid. Thankfully they are not all at the same time but in various combinations, but as you can imagine it is going to be very hard for her little body. We will keep you updated on the exact dates in a later post so you can keep her in your prayers.

Today, we go to bed joyful that the God of Hope is working in our lives.

Back to the Clinic Today

2010-04-28T21:40:00.006-05:00

Sarah woke up this morning with not much fever at all, if any. But as the morning progressed, it started inching up. We still had high hopes of not having to go in to the clinic at the hospital though so I took all three girls to Hannah's dance class at 10:30am, while Jay did some much needed errands, but he told me to call him at any moment and he would come. When we arrived, another teacher, not Hannah's normal teacher, was waiting for me to tell me that this week was costume fitting week and so most of the class would be for talking to the parents about the recital and fitting costumes. (as she talked I had to keep taking Sarah's temp. which was staying high) Well, since we just arrived in this country two months ago and since Hannah just joined this month, it was too late to order a costume and therefore she can't be in the recital. We knew all of this before, but I had no idea about today's class so I wasn't able to prepare Hannah. The sub teacher did a little intro. with the girls in class so I asked another mom, who I have met once before, to hold Rebekah as she was whining and squirming to get down, while I kept taking Sarah's temp. which was again high so I had to call and report this to the clinic. They said I would have to bring Sarah in for more IV antibiotics. I was prepared with the numbing cream in my purse for Sarah's port and I also brought the press 'n seal. So, as I was trying to get the cream on is when it was time for the parents to come in to the class to start recital discussions so Hannah was having to come out by herself and the mom holding Rebekah had to give her back to me. Hannah was a bit sad about it all and cried a little telling me she just wants a pretty costume and wants to dance on a big stage. Rebekah was flattening her body to be able to get down on the floor and play and Sarah was whimpering that the cream and press 'n seal was itching her skin. At this point, I was on the verge of tears in the middle of the dance studio waiting room.

As we drove to the clinic, I did call Jay, but said that although I was in tears at the moment, everything would surely be better once we got to the clinic. The girls talked me into McDonald's drivethru (ya, now you know how much of a basket case I really was!), since it was lunch time and we got to the clinic where the great nurses helped so much and set us up in an infusion room with a crib for Rebekah and a TV with World World on! Sarah did great with accessing her port but poor Hannah might have nightmares tonight as she watched the huge needle being pushed into Sarah's skin and moved around to find the right spot for blood to come out and antibiotics to go in.

I am so glad that a dear friend brought dinner tonight as another did on Monday or else our family would be eating cereal more times in a row than usual.

We are all home again tonight and very thankful for that. Sarah's blood counts were unusually high, 10 for white blood cell, which made me worry. A kid with Leukemia doesn't have numbers like that. But the doctor just said it was her body probably trying to fight whatever infection she has and it wasn't a relapse. I just keep my mind on the hope side of that - sometimes using lots of my energy to do so.

We did have a fun time tonight on the living room floor as a family just playing around and Rebekah took 4 steps! Now at least I can not worry so much about her lack of walking:)

Oh, and Hannah got some mail today. Since Sarah gets so much these days, Hannah is having the normal issues of middle child plus being the sibling of a cancer kid. So we signed her up for SuperSibs, a program for siblings of cancer kids. She gets mail every now and then and today she got a package with a trophy with her name on it and and inscription praising her for being so brave and loving ,etc. I have attached a picture of her holding her trophy. It is not sleeping beside her (hopefully not in the actual bed) as she wears a huge smile.

At Home

2010-04-27T21:24:00.003-05:00

Thanks for all of your prayers. We've needed them!

Sarah came home last night around 1 AM. We could have been home sooner, but they did not tell me that they needed one more urine test result until after I had emptied her urine measuring bowl. This was at 10pm. I felt awful because she would try to go and tell me she was sorry she just couldn't. I told her at 11 that we will just relax and so she fell asleep. I woke her up at midnight and we had enough urine for the test and we were discharged around 12:45. The funny thing is as we were walking to the van she says "Daddy, how did they get my urine?" She did not remember waking up.

We had to go back to the clinic this morning for more antibiotics and blood tests. Her numbers are good but she keeps having a low grade fever. We have to call the clinic in the morning with a progress report. There is a chance we might have to go back in for one more dose of IV antibiotics.

Each time we face hard situations like this I grow in admiration of Sarah as she relies on Jesus with her child-like faith. It is truly a child ministering to her father. I was joking with Anne the other day and said that if I was a person who was going to get a tattoo that represented the way I feel, it would be on my arm and be a picture of Jesus walking on the water, reaching down to pull Peter up. I feel like Peter saying "Lord, save me" as this storm rages in our lives. We know from scripture that Jesus not only saved Peter but he actually carried Peter to the boat. To me, this is a great picture of abiding in Christ. To be in total surrender to Jesus that He carries you. Peter knew he was too weak to try to even walk with Jesus' help. He rested as the Savior did all the work. I pray we find that type of quiet/rest and let Jesus carry us.

Another ER run

2010-04-26T22:28:00.003-05:00

We are in the hospital tonight. Sarah has been feeling unwell these past couple of days and her temperature finally rose to the magic number of 101.5 where we have to call the hospital and the hematology-oncology doctor on call said to bring Sarah in. I did try to convince the doctor that Sarah probably isn't neutrapenic (good white blood cells lower than 500) so we could just go to the Legacy hospital campus and not go all the way downtown. The doctor agreed and so we are at least close to home.

Her blood numbers looked like her body was trying to fight the virus or whatever she has, but she needs a little help. So they are giving her IV antibiotics, fluids and they are checking her output for a while longer to make sure she isn't too dehydrated since her heart rate has been elevated above normal since we arrived at the ER. She is feeling better now with all the medicine though.

It has been a bit traumatic tonight though as they had a hard time accessing her port (the thing under her skin that is connected to her heart) to draw blood and then give antibiotics and such. So we had lots of tears and sadness since it took over 30 minutes or so with lots of pushing and moving the needle around and such. Even with all of that, Sarah did so well. With big tears coming down, I saw her flinch when they kept having to push the needle far down and all around to try and find the right spot. She never screamed out loud although I saw she wanted to. Such a brave girl.

Hopefully we will be all settled back home soon.

2010-04-21T20:18:00.004-05:00

Sarah woke up from a nap yesterday with a handful of hair to give me, which is actually a somewhat normal occurrence around here. But she was more upset than usual saying that her head was itchy all the time and her hair was stringy and felt dirty. She had asked to shave it before but I put it off. Now she was determined. So since we needed to go to the Survival Gal Salon anyway to have Sarah's wig thinned and fitted, I called to see if they could also shave her head. They said they could do everything we needed and could take her in an hour. I was nervous getting us all in the car and nervous all the way there. I just couldn't come to terms with it all. When we pulled up to the salon, I realized that Hannah hadn't put any pants on, which I told her to do, after her nap. So we arrive with one emotional mama, one hungry baby (I had to wake Rebekah up to make the appointment and didn't have time to feed her yet), one child with no pants and one child determined to get her head shaved!

Sarah wanted to look at first as the lady started to shave it, but quickly decided that was too scary and so turned around and held me hand the entire time. Afterwards, it took her quite a while to get comfortable with having a totally bald head. She still isn't liking it all the time, but she said that she really didn't have a choice since it was almost gone anyway and it felt itchy and stringy. She also got her wig fixed and purchased a pink sparkly scarf head covering.

I was successful in holding it together in the salon and even in the car from the girls' point of view anyway since they were in the back and my tear face was looking forward. I have teared up a few times since then and the flood gates have threatened to open, but I still haven't had the opportunity to fully let out my feelings.

Sarah had her spinal tap today along with her IV drip chemo and injection chemo. She did so well. She didn't even flinch this time when they had to draw blood from her arm. I was so proud of her. Her counts remain good - 1900 ANC, 123 liver.

It took her a little longer to wake up this time from anesthesia so I had more time than usual to sit beside her bed and rub her now bald head as she was unconscious and hooked to lots of beeping machines. I did cry a bit then, but still remained mostly composed as the nurse was still monitoring Sarah's vitals.

Thank you all for your continued care for us. It would be a much lonelier road without you. Thank you.

blood count update

2010-04-17T07:19:00.003-05:00

Friday was another long day for us. It started with me running Sarah to the clinic for a blood test right after breakfast and then coming back home to pick up Anne, Hannah, Rebekah and Pa(my father-in-law who is such a big help). We then drove downtown for Sarah's physical therapy assessment.

We were worried her numbers (690 on Monday) would go down to below 500 after her treatment from Monday. Below 500 means a complete lock down for her. Through God's mercy her ANC number did not go down, it actually went up! She is at 784 which means she can keep her regular treatment schedule for Wed. (On a side note, we've started a new prayer before each needle prick. We say "yes, Lord, yes Lord, yes, yes Lord, Amen." It is to remind us of the song where we ask God to trade our sorrow, sickness and pain for the joy of the Lord. Sarah really likes this and God was good to us. She had her favorite lab worker to take her blood and she did not have a breakdown this time so we say "yes, Lord!".)

The physical therapy was very sad for us. It really showed the side affects of the chemo on her joints and muscles. Sarah has been falling a lot lately and we've noticed that it was not just her "slipping" like she has been claiming. It is actually her right foot that is most affected. From the therapy assessment, we saw that her ankles (specifically the right one) is very weak. She could not even move her foot up and down. To compensate she was having to pick her foot completely up in the air in order to walk which was causing her to fall. She could not stand on one foot using either leg because of her ankles' weakness. Her hamstring muscles are weaker also which is why she needs help walking up stairs and entering the van. If the insurance approves it, she will start going to physical therapy two times a week and she will get some leg braces. The great news is she can do this at the Plano location, but that means three or more days per week going to the clinic.

With all of this going on, poor little Rebekah has another virus. For those who remember our visit in November, Rebekah developed pneumonia during her first trip to the U.S. She continues to be allergic to the U.S. since our return because this is her second virus. Anne called the doctor with her diagnosis of hand, foot and mouth which they said is most likely, and it has been very uncomfortable for poor Rebekah. So please keep praying for us that we keep our sanity trying to keep kids apart and hands washed and of course that Sarah does not contract the virus.

An interview with Sarah

2010-04-14T17:33:00.003-05:00

I've been trying to talk Sarah into a video, but she said no. I finally was able to peak her interest in using my Dictate software so we could send some words from her to you directly. Below is an "interview" I had with her since she could not think of anything to say otherwise. :) I hope you enjoy it.

Interview with Sarah Grace Clark

1. How are you feeling? Good
(- ok that was nice but we need to know how you are really feeling since this is the most asked question.)

My stomach hurting a little and I don't feel good because I am tired.

2. Describe your days when you have treatment?

I have to get up early in the morning and get ready and put emla cream on, it's like lotion numbs your skin over my port. I have to fast, until after treatment, then they put me to sleep it takes five or 20 minutes to have an IT they stopped sleeping medicine from going in I am laying down flat when I wake up.

3. what has been the best part of coming back to the US?

I get a lot of food I get to see my cousins and grandparents, lots of room for me to walk around when my numbers are low

4. what do you miss about hong kong?

I miss my friends, going to Disneyland, I miss the church to.

5. What is the scariest part of having Leukemia?

Getting needles in me

6. If you could talk to everyone who reads the blog in person what would you tell them?

it is hard to go through chemo, thank you for all the presents and cards and prayers.

I will try to have more interviews so you can hear more of her thoughts as she is going through the journey. God Bless,

Update on today's treatment

2010-04-11T14:34:00.009-05:00

Sarah did well with her chemo today. She has to have her blood drawn first thing every time we go for treatment so the doctors can see if her blood counts are high enough for her to get chemo. She is always nervous and has asked to have her finger pricked each time which means they have to squeeze her poor finger for a long time to get all the vials of blood they need and the little hole turns into a long gash by the end of it all. Today they needed more blood for a few more tests, so we talked it over about using the vein in her arm this time. With just a few tears and a few extra minutes to compose herself, Sarah agreed to have the blood drawn from her arm. We love Katrina in the lab and were so happy to have her again today. Katrina did a great job and Sarah was happy she gave the arm a try.

The initial count was borderline today (900) but they thought it would be fine (has to be over 750) when the specifics came back from the lab, so they started the chemo. Later in the day when we were in the infusion room, the specific numbers came back and her ANC, the good white blood cells, was 690. (a good ANC is 1500 and can go as high as 8000 for normal people. Below 500 is really bad.) So it turns out, had they known it was so low, they would not have given her the chemo today. But it was already done, and the dose was upped today according to the protocol. In a way, I am glad that we didn't have the specific numbers back so that we could go ahead with the chemo and not have to wait and come back another day and delay this whole 2.5 year process. But I hope it doesn't bring her numbers down so low that she gets an infection.

Sarah is feeling so very tired, which is normal for a treatment day, and since her treatment this morning, she has only eaten two Dora popsicles, a few yummy organic strawberries and baby tomatoes that our neighbor brought us and a few bites of homemade bread from another wonderful friend we haven't even met yet.

We coaxed her to take her anti-nausea meds tonight, and I hope she can sleep through the night.

We have to go back to the hospital on Friday to get her blood counts checked again. And we are in a tighter lockdown now with her ability to fight off disease being so low.

The best numbers we did get back were her liver enzymes. A couple of weeks ago that was over 600 (normal is below 50). Last week it was down to 430 and today it was 90! So that is very good news. Her liver is working better and better!

A few of you are asking how I am doing lately - I found my phone in the bottom of the washing machine this morning as I was putting damp clothes from last nights laundry marathon into the dryer. That sort of sums it up.

In normal circumstances I am introspective and contemplative to a fault, and I tend to hide away there at times. So now you know where I have been lately instead of writing on this blog:)

We are still in shock sometimes that this is now our life. We thought being on the mission field on an island in the South China Sea was being stretched and molded by God. That seems like nothing compared to now.

It truly has been hard, a hard blow to faith and ideas of love and care. His presence is still here and near to us though and so we wait - for healing, for the other, for Him either way.

But my mother's heart is truly broken.

Unbelief of a father

2010-04-10T08:54:00.006-05:00

Something I read recently or a sermon I heard referred to Mark 9 where Jesus talks to a father who's son has a demonic spirit. It says in Mark 9: 21-24 "And Jesus asked his father, "How long has this been happening to him?" And he said, "From childhood. And it has often cast him into fire and into water, to destroy him. But if you can do anything, have compassion on us and help us." Jesus said to him, "'If you can?'- All things are possible for one who believes." Immediately the father of the child cried out and said, "I believe; help my unbelief!" "

When I first read this I thought "well, the father did not believe or else he would not have asked for Jesus to help his unbelief!" As we have gone through this illness with Sarah, I've come to understand this father a bit more. I join him in saying to Jesus, "I believe you are the Son of God, but when it comes to my child being helped, I do have unbelief so Jesus help my unbelief." As always, the story is not about the father or the kid being healed, but it is about Jesus. Jesus being so merciful and compassionate, looks on the father and feels his pain and sorrow for his son.

For me the battle is not "if you can", but it is "will you". Will you allow the Leukemia to return? This battle with unbelief for me is not about my faith in Jesus as my Savior, but an unbelief that limits His ability similar to the father in the story. I think this battle stems from an event that challenges my beliefs in His power. The night Sarah ran a temperature of more than 104 F, I went to her bedroom and in my spirit I knew something really bad was wrong with her. It was not a normal infection or fever. (This was two nights before we took her to the hospital, and she was diagnosed a few days after that.) I laid my hands on her head and prayed like I've never prayed before. I prayed, cried and in the end begged God to take away the sickness. I wanted her to be back to normal immediately and whatever was causing the infection to go away. Instead, we were given three weeks in the hospital, two and half years of chemotherapy and a total change in our life- moving back to the U.S. This wasn't near what I was praying for.

Ever since that night, I've battled as the father in this story in Mark and have cried "I believe; help my unbelief". Then God gives us a week like this week. I've forgotten the skies could be so blue and the weather so perfect. Yesterday, Sarah's cousins came over to see the flowers they planted a few weeks ago and Sarah smiled! - enjoying the time. In the coolness of a spring afternoon and perfectly clear skies, I understood God's mercies and love for me, Sarah, Anne, Hannah and Rebekah. Just as he looked on this father with compassion and healed his son even with the battle of unbelief, Jesus is doing the same for Sarah. The point in all of this is the same as the story. It is not about Jay's unbelief, it is about Jesus' mercy. In the midst of this, Jesus is challenging me not only to come and follow Him, but to learn to abide in Him. Abide in Him with complete weakness that everything is surrendered to my Savior. I have nothing to give, nothing to do, nothing to control. Then I will understand, where I am weak, He is strong.

It is Finished!

2010-04-04T16:56:00.004-05:00

What a wonderful Easter! As I get older, I start going back to my roots a little more. This morning I found a great song from my childhood on Youtube and played it for the girls- "He's Alive". The girls do not hear much Gospel Music in Hong Kong and I was pleasantly surprised that they were still singing it as we drove to church this morning.

During our service, I realized the power of the resurrection like never before. As we were reading scripture, the words "he defeated death" really stuck with me. I immediately felt a rush of praise and joy as I realized just how much Easter Sunday means to all of us, especially to our family at this time. If anyone ever wants to know how we can continue through the power of the Holy Spirit with our princess having a serious and potentially fatal disease, you just need to look at the empty tomb. The fact that Jesus defeated death gives us assurance that whatever the future holds, nothing can separate us from the love of God.

Years ago when I first went to the mission field in Egypt, I was talking to a very wise man about the future of having a wife and kids. If God continued to call me to other shores, how does a person deal with the potential loss like so many missionaries had to face in the past? He took me to this scripture Psalm 112; 7 "He (the righteous) will have no fear of bad news; his heart is steadfast, trusting in the LORD."

Today we celebrated the risen King who said on the cross "It is Finished". He is alive and for all those who believe in Him will have eternal life with Him just as the criminal on the cross cried out "Lord, Remember Me!". This is the essence of trust for us as believers and for our children as they believe. That Jesus will remember me (them) and they will go to be with Him in Paradise. Trusting in the Lord even with the potential loss of our princess is difficult, but it is not impossible. On Easter Sunday, we celebrated the fact that death no longer has a sting for us as believers. Death is defeated and in years past I have understood this fact, but today I fell into a deep affection with Jesus praising Him for defeating death so we do not have to fear bad news.

Sisterly Affection

2010-04-02T17:47:00.004-05:00

Thanks again for your prayers. We know that our treatment days would be so much harder without the presence of our loving Savior. Sarah's liver enzymes were low enough to have the treatment today. This was great news, but it means we will have to battle this problem again when she has the 6mp chemo pills during maintenance. This of course will be another day, but today we are rejoicing. Speaking of Joy, Hannah Joy wanted to encourage her sister so she came along for the treatments today. The picture shows them playing around while we were waiting for the doctor. The nurses and doctors at the clinic do a great job allowing the kids to be kids.

When they brought the needles to access Sarah's port, all you heard was Hannah saying "oh my goodness!". As they were pushing the needle into Sarah's port, Hannah's face was hilarious. She was showing all of the anguish, excitement and concern in one expression. Even the nurses started laughing.

Treatment Schedule

2010-03-31T20:10:00.002-05:00

Last week Sarah started the Interim Maintenance stage of her treatment. This lasts for 56 days and she will receive treatments every 11 days. So this means we will be at the clinic on Good Friday for a treatment. She will have two different fusions, but thankfully she will not have another spinal tap until the 21st of April. Below are the dates of the treatment for this stage.

April 2nd- 2 infusions
April 12th- 2 infusions
April 21st- spinal tap, 2 infusions
May 3rd- ECHO, 2 infusions

This stage ends around May 18th and then she will start the final stage of the intensive program.

We are on the second week of a consistent schedule which is making our life much better. All of us feel we are accomplishing small steps throughout the day. These small steps signify returning to a type of normalcy in our lives. This is a huge blessing, but we know at any day, time, place that all that could change with an infection so in the back of our minds we still wonder if/when we will be making the hospital trips again. To date, Sarah has only suffered one fever since starting the treatments two months ago. This is a great example of God's mercy in our lives.

As we learn more about the cross during the Easter season, we are reminded how our Savior is incredibly gracious and merciful to us. Through His death and resurrection, we have been set free from the bondage of sin which means we can find joy in Jesus even while Sarah battles cancer.

Exciting Weekend

2010-03-27T18:29:00.003-05:00

Thanks for all of your prayers for Sarah on Wednesday. She did a wonderful job and God was so merciful to us during the day. The drugs made her a little tired on Thursday but she has been waiting for this weekend for a long time so she recovered fast.

We started out yesterday hunting eggs at Children's Hospital and today we went to Circle R Ranch for an exciting event giving by All Kids Count. Sarah and Hannah rode horses and did other fun things with their parents and grandparents. Tomorrow, we will go to church and then we go to Disney on Ice at American Airlines Center. Children's Hospital received tickets for kids and their parents so we will be given VIP treatment. All of this has been great for not only Sarah, but all of the kids. For a brief moment, we see Sarah forget her current circumstances and just enjoy being a kid. You don't know how happy that makes me and Anne.

Speaking of Anne, I wanted to share this picture of her and Sarah on Wednesday. They give Sarah games to play so the time can pass faster as she is receiving her chemo treatment. I took this picture because it shows Anne's love for Sarah in such a special way. She has been a great mom during this time. (Also, a great wife!) Considering Anne does not like change, she has adapted very fast to our new home and as always making it an En-Gedi for us. We need this oasis to be spiritually renewed and thanks to the power of our Holy Spirit who uses you to pray for us, we are being renewed.