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Wednesday, December 22, 2010

We are home!

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. :)

Tuesday, December 21, 2010

Merry Christmas anyway!


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

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!)

Monday, December 20, 2010

Another Day


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.

Sunday, December 19, 2010

Update on Sarah

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.

Friday, December 17, 2010

Another Hospital Stay

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:)

Tuesday, December 14, 2010

Sarah's Birthday


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!

Thursday, December 9, 2010

In case you missed it

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

On the radio today

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

Monday, December 6, 2010

Unofficial video of the parade

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!

Tuesday, November 30, 2010

Upcoming Events

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.


Friday, November 26, 2010

Our Disney Trip!

Friday, November 12, 2010

Disney, Here We Come

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.

Thursday, October 28, 2010

Safely in Asia

















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, Check Spellingshe 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.

Monday, October 25, 2010

Video from Tiff's Treats

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

Tuesday, October 19, 2010

Catching Up





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!

Monday, October 11, 2010

Starting Chemo Again

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.

Thursday, October 7, 2010

Good News but a Little Disappointment

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.

Friday, October 1, 2010

Treats and a Walk

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!

Thursday, September 23, 2010

video update

Friday, September 17, 2010

written on the 13th- it's almost funny

(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

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. :)

Wednesday, September 15, 2010

Hair is growing fast


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.

Sunday, August 29, 2010

Going Home

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.

Tuesday, August 17, 2010

Sarah's New Hat



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.

Thursday, August 12, 2010

Back to Work and Riding for Sarah Grace

















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.

Wednesday, August 4, 2010

Camp! Camp! Camp!



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!

Saturday, July 24, 2010

Going Camping

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. :)

Tuesday, July 20, 2010

Incredible Weekend

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.)


Thursday, July 15, 2010

Anniversary


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.

Saturday, July 10, 2010

All Cooped Up



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...

Tuesday, July 6, 2010

Feeling good but low blood count


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.

Thursday, July 1, 2010

happy to say goodbye to June


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.

Sunday, June 27, 2010

One Down, One to Go


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.


Tuesday, June 22, 2010

video update

Thursday, June 17, 2010

Stitches and Dim Sum



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.

Wednesday, June 9, 2010

Hannah's Ballet Recital




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.

Tuesday, June 8, 2010

Sarah is Home

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

Monday, June 7, 2010

In the Holding Cell




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.

Friday, June 4, 2010

Building Endurance




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.

Thursday, June 3, 2010

Admitted Downtown



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!)

Wednesday, June 2, 2010

Another Change

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.

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!

Tuesday, June 1, 2010

More Information

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.

Sunday, May 30, 2010

At Home for Five Hours

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. :)

Friday, May 28, 2010

First Hospital Stay on This Side of the Ocean

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

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.

Thursday, May 27, 2010

A short update

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

Tuesday, May 25, 2010

A Mess



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

Wednesday, May 19, 2010

A Miracle




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.