Treatment Schedule

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

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.

Snow, Snow, Snow, SNOW

The weather is one of those things that without a doubt, we know that we don't control. Some cultures have even made gods for the different weather conditions or lack there of. There are over 200 such weather gods or gods with weather powers. The Bible tells us who is in control of the weather, and He is the one who created it and everything else. If you want to see the hand of God, if you are in need of a tangible exhibition of His power, you can find it in the weather.

Texas is known for its erratic weather, but it still surprises me for some reason. One day it can be 70 degrees (22C), and within a couple of days, snow is falling from the sky!

The girls and I saw a couple of snowflakes on Sat. afternoon but by that night, the heavy rain was turning to snow and the snow was sticking to the ground. When the girls woke up on Sunday morning, there was a think layer of several inches of snow. They were so excited that they ran to get their coats and put them on over their pajamas, ready to go outside and play.

It was very windy and snow was blowing everywhere, but we did get to spend a few minutes enjoying such a great novelty for us. And we gathered two bowls of fresh snow and made really yummy snow ice cream.

It is amazing how snow can transform a landscape. Even the toys left messily in the backyard became beautiful white sculptures. And the weeds in the dying brown grass were neatly covered by a fluffy, clean, white blanket.

God made two little girls very happy on Sunday. It shows us the kind of loving, caring God that He must be when He does something like that just because He can and wants to bring joy to His children. This also helped their mother... as I fight against doubting that God is present at times and that He cares about this hard trial our family is going through.

I find myself getting angry more often... at anything or anyone. I'm angry that Rebekah can whine for over an hour in her bed and fight sleep, I'm angry that the dust accumulates in the corners within a day and we need to have the vents cleaned, I'm angry that the awful life-threatening side effects of toxic chemotherapy are affecting my daughter, I'm angry that I feel so needy but don't want to burden others by asking for help. My list can go on - and perhaps it should during a private counseling session with me and my journal.

Still, God holds me and speaks to me as I force myself to read His words in the Bible and pray during the dark hours of the night when I can't sleep, and to look for His blessings in the midst of the struggle. He intervenes in the subtleties of daily life with 'coincidences' that can only come from Him. I am glad He does this, otherwise I don't know how long I'd last with this frail faith of mine. But I know by experience that if I really want to stay in communication with Him, in communion, then I really need to keep making myself read the Bible daily, download and listen to Christian speakers, read daily devotions, play Christian music, and pray and listen.

Sounds like my part is so simple, yet I constantly fight against doing these things and get in a pit of pity that is hard to get out of sometimes. I pray for God's strength to keep me on the path that leads to Him and for His endurance to continue on it.

Sarah's blood work showed today that her liver isn't functioning properly, or just can't handle all the toxins from the chemotherapy as the normal liver number is 50 and hers is 660. So this phase of her therapy might take longer than we originally thought. The doctor will continue to monitor it each week and space out her treatment accordingly. Please pray that this side effect won't cause Sarah problems and that it won't stretch out the time of her treatments. We go in tomorrow for three kinds of chemo - one into her spine, one IV drip, and one injection. And she will have her port (that is implanted under her skin) accessed tomorrow for the first time. Thank you so much for continuing to pray for us all.

Little Chefs

Sarah has been nervous lately since she will start back on intensive treatments this Wednesday. During this last week, she has had a rest to let her body build back up a bit in order to be able to take the coming chemotherapy. We know that she will most likely not be able to participate in many things and not feel well enough to want to, so we are taking advantage of this time and doing some fun things. We still can only do one thing here and there as Sarah gets tired so easily. But she isn't whining about it as much when the exhaustion comes from doing fun outings!

We have received some wonderful meals from our caring friends lately which has helped lessen my dinner anxiety - you know, when it is 5pm and you still haven't come up for air since 7am and therefore have not thought about what to feed your family for dinner yet.

One sweet friend brought a few frozen dishes to last us a while and some neat pencils that turn into paint when you wet them. She stayed for a while helping the girls with the craft, which gave me a nice break. She then suggested for the girls to come to cook with her mom at their store - Young Chefs Academy in Frisco (www.youngchefsacademy.com/frisco). Her mom, Chef Nana, was going to be doing some things in the store and wanted to do a special class for Sarah and Hannah, since Sarah can't be with lots of kids in a class. We have gone to birthday parties there before so Sarah and Hannah remembered how fun it was and the were so excited that they wanted to go right away. So we went on Friday and they got to decorate cakes and make the fondant icing. They did everything like the real kids' cooking classes complete with balloons, gift bags and aprons.

They had such a good time and I was so happy to see them just being kids and doing something they love - cooking, without having to think about the hospital and having cancer and feeling sick. They brought their cakes home and true to their personalities - Hannah wanted to cut hers up for dessert after dinner so we all ate some, and Sarah wanted to keep hers perfectly in the package:)

Thank you so much Ali and Chef Nana for having the idea and for giving us such a wonderful time!

Refreshing Sunset

Tonight as we were coming home from having dinner with friends at Rainforest Cafe, we saw a beautiful sunset. I was reminded why I love Dallas when I saw the big blue sky and the sun showering us for the last few minutes of daylight. We all just thanked God for all of the blessings He has given us. It was a great reminder of how He is working in so many ways through so many people. It is very humbling.

This week has been fairly uneventful. Sunday we were able to go to church for the first time as a family since Jan.10th. We have always enjoyed attending church wherever God leads and so we have missed that part of our lives so we were thankful to sing together and experience corporate worship as a family once again.

Sarah has had no procedures this week because the doctor is giving her body a rest before this next round of intense treatment. So she has only had a blood test this week and it came back with very good results. Her numbers have been high enough for us to have controlled outings with a few friends this week. We are so glad that people called and invited us out during a week that we could accept!
Tuesday is the last day of the Consolidation Stage and on Wednesday, we start Interim Maintenance. This will be 56 days ,and she will have a tougher time with the drugs. Please be praying for her on Wednesday. She will have a spinal tap, chemo injected into her spine, and then two IV infusions. It will be a hard day for her.

She wanted me to tell all of you thank you for your prayers, cards and support. I am encouraging her to say it in her own words. I told her she could just talk to you through the speech recognition software I have on my computer and that many people would love to hear from her. She is a little shy but I believe she will eventually come around and write her very first post soon.

As I said before, it has been an uneventful week which is a blessing. We are resting in Jesus and enjoying a peaceful week before the storm of next week.

Recovering

From last Thursday, March 4th to this Wednesday , March 10th, we spent every day except Sunday at either a hospital or the clinic. Even with the wonderful care by the doctors and nurses, it still exhausts you mentally and physically. I am still trying to recover and the much needed rest I thought we would have in the U.S. still has not materialized. I believe the entire family is feeling this. We returned from HK with our fuel light "on" and now we are very close to empty. With being so tired and constantly pushing to make it each day has created a numbing effect for me in many ways. It is hard for me to read and concentrate along with having an extended time of prayer. This has been the biggest reason you have not heard from me in a few days. I am a verbal person so writing also causes me to feel more tired. :) I believe the main strugge is not the amount of sleep, but the type of rest we need.


The book I am really enjoying, but at a very slow pace, is "Communion with the Triune God" by John Owen. I've been reading about God's love for us and that it is like the sun and sprays a constant powerful love on and around us. We in turn are like the moon. We can be dark with no love toward God, or a quarter moon with little love. We all desire for the full moon, but we know most of our time on earth will not be at the full moon stage. Owen goes on to show four areas we show God we love Him. They are rest, delight, reverence and obedience. For most of my journey as a believer, I've only concentrated on the obedience part of showing my love for God. At this time, He is challenging me more than ever to learn how to show my love for Him through rest and delight. These two areas are very difficult for me especially as we go through this struggle with Sarah's cancer. I pray He uses this journey so that the entire Clark family learns how to rest and delight in God the Father, through the love of Jesus and in the power of the Holy Spirit.

It is like He is asking me, "Come, Jay, you are greatly troubled. I am the Good Shepherd and I will give you rest so you can lay down in green pastures and fear nothing. Cast your burdens to me and delight in the fact that your name is written in the Book of Life."

As David writes in Psalm 62.
5 Find rest, O my soul, in God alone;
my hope comes from him.

6 He alone is my rock and my salvation;
he is my fortress, I will not be shaken.

7 My salvation and my honor depend on God ;
he is my mighty rock, my refuge.

8 Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

Through this, I am pouring out my heart to Him. It is an ugly mess of a heart, but I pour because I trust him and love him and want to show Him that I do.

Recovery

Sarah's surgery went great. She is home recovering and is a bit sore where they port was put it on the left side of her chest. She can't lift her arm, and she is taking pain medicine. The experience at the hospital was so wonderful. The staff remembered meeting her the day before, and when we got to her pre op room, there was a pink crown with jewel stickers and alphabet stickers to put on it. Doggie, who has been with her since the day she was born, even got a hospital wristband!

It was a busy day in surgery though so it took a little longer than we thought to get started. And during this wait, Sarah was so nervous that she decided we needed to call it off and tell the doctors we decided not to have the surgery! To get her mind off of that train of thought, I read the Junie B. chapter book that the staff put had brought her from the Children's Medical Center library. It made us laugh, and it passed the time. Sarah wanted me to come back with her to the theater, and the doctor was so gracious in letting me. So I dressed up in scrubs (a white bunny suit jumper with a blue shower cap - thank goodness Jay didn't have his phone to capture the moment) and rode on the bed with Sarah!

The first doctor put in her new port and then her oncology doctor came in and did her lumbar puncture and injected the chemo. So it was a two for one day with anesthesia.

Then in recovery, the nurse had a new soft Panda waiting for Sarah and even the color of popsicle she wanted (red, of course) and the flavor of icy she had told them she wanted during pre op. Her post op nurse, Minnie, has a sister living in Hong Kong and working as a Cathay flight attendant. Turns out, she even lives in Tung Chung, just like we do! Small world. It was so nice to find that connection. And just like Sarah's really nice nurse, Maggie, in Hong Kong, there was a really nice nurse, Maggie, here in recovery. Sarah liked that coincidence too. After she woke up fully, they wheeled in a flat screen and brought DVDs. We didn't even get to finish a movie before Sarah was able to be discharged. They have both wheelchairs and red wagons to take you to your car, and Sarah chose a wagon. And with free valet, our car was waiting at the door.

We now have two weeks without chemo, just blood work. Sarah's body will have a chance to recover before starting interim maintenance for the next 56 days.

Thank you for all your prayers and for caring for us and taking care of us during this time. The blessing it brings us continues to refresh us and revive us in such a hard time. Thank you.

Surgery

We were at the clinic for the better part of the day so Sarah could have a transfusion to be ready for surgery tomorrow. She had decided to get a port since that is what is given to kids here in the States. And her central line is very bothersome and hard to keep dry with showers. Her skin has been getting red, sore, and tender since we have to cover every night for a bath. The port will be under the skin and Sarah can even swim some this summer! But with the weekend in and out of ERs and then with her hemoglobin numbers so low, the doctor wanted to do a blood transfusion to make sure she would be ready. And after a nice day in the infusion room at Children's Medical Center Plano with snacks, TV, and a trip to the prize closet (they even have a Play Station in there!) everything is a go for 6:30am in the morning! The wonderful Child Life specialist gave us a tour of the surgery floor today and put Sarah's mind at ease. Kate even gave Sarah a sample from the surgery floor Slushie machine.

Please pray for our day in the surgery ward and for Sarah's nerves as it is always a bit stressful for anyone to have surgery.

To get ready for surgery and have a fun outing, we went to this new out-of-the-way park we found, but it was full since school was already out (the day at the hospital was a bit longer than we anticipated). So Sarah couldn't really play much on the fun park stuff since it was so crowded. But we have a fun time with our picnic basket and walking across the bridge on such a beautiful sunny day.

To the ER again

The antibiotics did work their full 24 hours, but almost to the minute (3am) Sarah was in our room saying she didn't feel good. Even with Tylenol, all day her fever climbed and she just stayed on the sofa resting and not eating much. By the evening, the fever had climbed and stayed at the critical number, so we called the hospital again and they said to come in again. I explained the situation to the doctor on-call and he said we could go to the hospital location near us and not have to go downtown. This ER was great too and all the people were super nice. They wheeled in a big flatscreen with a Tinkerbell DVD and Sarah ordered mini hotdogs and chocolate milk from the menu while they took her blood, swabbed her throat (not an easy thing to do to Sarah Grace), and gave her IV antibiotics. Once again, her blood counts were very good and they let us go. We are home monitoring fevers again tonight and feel blessed to be all together for another night. Those I hold most dear are all asleep - my little baby girl, my sweet dark-haired girl, my precious first born, and the most wonderful man I know, who sleeps beside me. I just went around and checked on them all and saw their peaceful faces, sleeping, safe. Life is good.
(Sarah has been a little down these past few days about not getting much email from her friends. If you have a minute, could you, or help your child, send a little note Sarah's way. She would love it.)

First Trip to the ER

After staying up way too late doing little tasks, I went to check Sarah's temperature before going to bed. I had inched up to the critical point where we are supposed to call the hospital. The doctor on call called us right back and after assessing the situation, she asked us to come right away to Children's Hospital downtown since Sarah is so early on in treatment. They aren't equipped for some ICU and other serious situations at Children's in Plano yet. I was just about to make a hospital bag because a new friend and fellow mom who has a daughter with Luekemia had just emailed me a list of what to include in your hospital bag. So, I threw together the items I remembered that were on her email and I went to get Sarah some warm clothes on. Thank goodness Jay's parents are here and could stay with the other two children. Jay went out to warm the car up and then came back in to help us into the car. Sarah was not happy at all about this and cried that Hannah and others couldn't come with us. She thought it was early in the morning and she wanted to find breakfast somewhere. It was actually just after midnight when we pulled into the ER. They put Sarah in an isolation room and started giving her IV antibiotics before her bloodwork even came back. The nurses and doctors were so amazing. They said if Sarah was 'neutropenic' (her neutrophil count, good white blood cells, was below 500) we would have to be admitted. The doctor came back with the counts sometime afte 2am and said that we could go home! And that her hemaglobin was even up from yesterday so she might not need the transfusion they were planning for Tuesday. We were pleased but Sarah's face didn't look quite as excited. After being called princess and doll all night and being given a drink and a popsicle, she had already been planning on getting her own room and bathroom and ordering from the hospital menu! She had told the medical staff how things were in her other hospital in Hong Kong and when they told her what it was like here, she was ready to try it out. But then she realized that going home was much better than even ordering whatever you want from the hospital menu. So we arrived home sometime after 3am and all crawled into bed.
We awoke before lunch and had a fun day of enjoying the nice weather and being a family all together again. But this evening, Sarah has a fever again and Rebekah's fever is being kept at bay with Tylenol here and there. Sarah's isn't to the critical mark yet, but higher than usual. So we will be waiting it out again tonight. Thank you all for your constant prayer over our family - it is a minute by minute situation at our house right now it seems.

First fever

Rebekah has had a 102.8 (39.4) fever since yesterday evening. And Sarah has 101.1 (38.3) now. It has to reach 101.5 (38.5)before we call the hospital so we are monitoring every 30 minutes. I know I am not supposed to feel that it is my fault and all the doctors say it happens to everyone, but I do feel like I didn't do enough to keep the germs out of our house or I didn't clean enough or isolate enough. I just pray for the strength and wisdom to do the part God has given me to do and then I pray for the faith to trust that God has everything under His control.
I have procrastinated against packing a hospital bag to have ready. I think I might should go do that now. Not sure what to pack, so I'll just go put something in a bag at least.
I am feeling a little removed from daily life since a simple fever can alter the course of our whole week as a family and put us on such an alert that in any coming 30 minutes, we could be on the way to checking in at the hospital. Vulnerable is the word, I think. And a little afraid and angry with a bit of loneliness mixed in. And of course with it being dark outside, all of this is just multiplied as everything is worse in the night.
Thank you faithful prayer warriors. We are constantly lifted up by your intercession and are so grateful you are fighting on our behalf when we aren't able to do so.

Learning to be thankful

One of the reasons we returned to the U.S. was to give Sarah a more normal lifestyle. Since Hong Kong is the most populated place in the world (per liveable sq. ft) you can't go too many places without people. For this reason, her life would have been in our flat. As you can see from the picture, she now gets to go out and play with her sisters at the park next to our house. Although this is a huge blessing, it is different than in the past because she mainly watches as the other two sisters play.

For me, watching this slow breakdown of her body is just as hard as when I was sitting with her in the hospital the first few nights when we had no idea what was happening. I feel the same as my heart gets heavy and so sad for her because to a point her childhood is being taken away. She doesn't have the carefree smile or joyful laughter like the other 7 year olds. Experiencing the change in her life is challenging me in how I view scripture. So what does God do to give me a teachable moment? He gives us this scripture tonight in our devotion, 1 Thess 5:16-18 " 16 Be joyful always; 17pray continually; 18give thanks in all circumstances, for this is God's will for you in Christ Jesus." As I see this, I interpret Paul telling us that it is God's will that we are thankful in all circumstances.

I have taught, preached and shared this verse with people, but now I am challenged like never before with this verse. The application in Sarah's life is mind boggling for me. Am I supposed to be thankful we are going through this? Truthfully, there are many times I am not thankful, but instead angry or in despair. To teach me, God again gives wisdom to Sarah because what does my princess tell me as I admit to our family that I am struggling with being thankful? She says "Daddy, I am not struggling to give thanks to God." In my mind, I was thinking, "Sarah, how are you remaining thankful?"

Then we read the remaining part of the explanation of the scripture. We learn that it is God's will that we are thankful in these circumstances because He is with us to help us endure these circumstances. Jesus is with Sarah, and we are to exclaim, "thank you, thank you thank you!" Could we imagine life without Jesus at this moment? I would not make it one second; this is how desperate we find ourselves. At our Christmas Eve service I preached on the prophecy in Isaiah that describes Jesus as Immanuel, God is with us. Now, I can add to that sermon with a new illustration from our lives. Like never before I am so thankful Jesus is Immanuel! So God is teaching me to be thankful in all circumstances because it is His will for us in (Immanuel) Christ Jesus.