Saturday, January 30, 2010

Two More Days

All day I've tried to console Sarah with reminding her that she will come home on Monday, if everything goes ok with chemo tomorrow and Monday. She is starting to understand more just how much her life has changed. As she realizes these changes she starts battling being down and not having much happiness. Since she is a Clark, there is a big joy in food. One of the changes that is depressing her the most is not being able to eat bread especially pizza. This is until her immunity numbers go back to a certain level. Like anything, when you want something and you cannot have it that something starts to taste very good in your mouth. To add to this frustration, the steroids are making her have a constant hunger pain and we have to be the one to limit her intake of food because she has two days of chemo coming.

Our prayer request is that the nasty side effects of chemo will not happen. I was encouraged watching the progress of Matt Chandler on YouTube. He is the pastor at The Village Church in Dallas who is having to endure 6 weeks of chemo and radiation. They continue to pray that the side effects are minimal and God is answering their prayers. He has even started preaching again. This shows how mighty God is and what He can do as we trust Him in this situation.

It is amazing how God is using Sarah in our lives. She is actually bringing comfort for me. I thought is was supposed to be the other way. haha Today she was unhooked from her IV so I actually was able to completely hug her for the first time in two weeks. I think of all of those times I took it for granted that I was able to wrap my arms around her and I pray that for now on I never take that awesome privilege for granted with any of my daughters. Each moment, each conversation is truly a blessing and gift from God.

So now I go to bed asking for my Father's arms to wrap around our family. We hopefully will be together again in a few days. We will have to be in total lockdown without any visitors but we will party!! We will be together again! Praise God

Friday, January 29, 2010

Stength and Help

Today brought exhaustion for all as we have been at this for two and a half weeks now. We are grieving the life we had that ended the afternoon at Princess Margaret Hospital when the doctors took me and Jay into a side room and gave us the news. We have been running on shock and survival and adrenaline, and we are running down some. The support from all our friends and family has been a lifeline for us. I am daily overwhelmed at the love shown to us and my understanding of receiving such love keeps growing as more people pour blessings on us. God continues to strengthen us and help us.
The hospital were Sarah is being treated is a teaching hospital, so routinely the head doctors bring the students in for a practical. Sarah finds herself on center stage answering their questions and being the guinea pig as they poke and prod. She does enjoy the interaction but then it all gets to be too much and she asks to be left alone. She has been a good patient though.
Tonight, when we changed shifts on who stays with Sarah, Hannah and Rebekah came up to see her through the door because they have all missed each other so much. We hope that Monday, Sarah will get to come home so we can all be under one roof again.
Thank you for your continued prayers,

Thursday, January 28, 2010

What Love from our Family

Sarah's second treatment of chemo is going much better. She only has one chemo drug this time instead of three. She is more tired than usual, but the steriods are helping to keep up her appetite.

Today, she has been overwhelmed with the love of Jesus through His Bride the Church. We first received the box of fun things from our family at Bent Tree that were part of Anne's MOPS group. Second, we had visitors from Island ECC. Sarah was able to walk up close to the door and wave to these wonderful sisters from the mom's bible study. She had special visitors who stood at the door and encouraged her. The first was a wonderful lady who has lost her hair through chemo so she showed Sarah her wig and how her hair is growing back. The next was a young lady who is going through chemo now and they shared treatment stories and compared how many pricks they have on their arms and hands. Sarah just talked and talked to them through the door. It lifted her spirits so much to have someone to share her experience with and to be encouraged by people who love her. Tonight she will eat another meal prepared by a group at The Union Church. They sent yummy lasagna last night along with many cards that were collected from their children's sunday school class. All of this has shown Sarah that Jesus will send people from all places to encourage her through this journey. It also encourages me to see the Bride of Jesus, the church, reach out and minister to us even though they do not even know us. I am reminded of the song we sang at churches my dad pastored when I was young.

"I’m so glad I’m a part of the family of God
I’ve been washed in the fountain
And cleansed by His blood
Joint heirs with Jesus as we travel this sod
For I’m a part of the family
The family of God."

To date, we know of churches praying for Sarah in H.K., Mainland China, Japan, Cambodia, India, Philippines, Singapore, New Zealand, Australia,Canada, U.S. and probably more that we do not know of. Wow, what a wonderful loving Father. His love is truly unfailing.

Also, Sarah has some great ideas for fashion designs for kids with Leukemia and the would be modest and pleasing to God. (this was her project this morning, drawing new designs for clothes for kids in the hospital.) She would love to talk to a real designer. Even with all of her new "accessories" she has picked up at the hospital she is still trying to be Fancy Nancy. Someone gave her a design book to make drawings of her ideas so she now wants to be a clothes designer. I guess that is a piece of H.K. rubbing off on her. :)

Wednesday, January 27, 2010

The God of All Comfort

Sarah and I had a good day doing some crafts and reading and playing. She only threw up once and was just a bit tired and 'nausie'. It was a bit emotional today though as the little 3 year old next to Sarah got her head shaved. With the language barrier, we aren't able to carry on many in-depth conversations with the parents, and Sarah isn't able to do that with the other kids either. But we try our best and mostly just smile and nod a lot. So today when the nurse put the little girl next to Sarah in a chair and put towels on her shoulders and started up the electric clippers, Sarah and I were a bit shocked. We didn't know this was coming and we couldn't understand why they were doing it. It took several minutes for the nurse to shave off all the long, dark hair while the little girl just sat with a scared, sad face. All I could do was try and keep in my tears as I silently cried behind my doctor's mask. Sarah looked on with such compassion and sympathy and kept asking, "Why are thy doing that to her beautiful hair?" When it was all over, her father picked her up and put her back in her crib as she whimpered a little. I finally collected myself enough to find a somewhat English-speaking nurse so I could ask why they did that. The nurse said something about the hair staying dirty and falling out too much and they can't keep her chest catheter clean. She has been on chemo for 6 months.
Sarah thought she was next and I told her that it isn't something we will be doing any time soon and probably never.
We are in desperate need of God's strength to live each day and this trial for us has helped to remind us of that all the more. I pray that that God of all comfort will bring comfort to Sarah so that she might help in comforting the little one that sleeps in the bed next to her tonight and that this little one would know the love of Jesus.
2 Corinthians 1:3-5
3Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 5For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.

Tuesday, January 26, 2010

The day after chemo

View the Chinese translation of this post here.

I wanted to give everyone a quick update after last night. Sarah had a good day, but she is really tired and still a little sick to her stomach. She still has a little appetite so that is good news. To date, she has only lost around 3 pounds since entering the hospital two weeks ago. We are praying we all can go back home together on Tuesday. At that time, we would come back to the outpatient ward to have chemo every two or three days.

We are reminded constantly how God is good. A friend of a friend offered to let us use their flat/apartment that is only 15 minutes from the hospital. They not only have been so nice to us but the greatest gift is they are allowing us to use their car and driver. (A perk given to some expats working in HK.) This way we are able to send Sarah food immediately after we cook it. Hopefully she will enjoy "home" cooking. This is just another example of God watching after her with detail. I must say the Clark family is being treated great also. Hannah has a play room that has enough crafts and toys for three kids, but as most little sisters she can't fully enjoy it without her sissy.

Anne and I also need your prayers because we will have to make hard decisions in the next few weeks as we finalize if we will go back to the U.S. or stay in H.K. for the remainder of the intensive treatment. There is not an easy answer. Both really have good and bad points. I believe this is why it is so difficult to make.

Blessings, Jay

Monday, January 25, 2010

Please pray

Praise God that the news has been good today! (see Jay's post for today)
Sarah finally succumbed to the nausea an threw up - her entire dinner. She couldn't get the antibiotics to stay down so they brought the liquid form. She was leery of the taste, so I had to taste it first. Thankfully, it was a sweet medicine. She took it and has kept it down. She is still 'nausie' as she puts it and is trying to find a position to alleviate the feeling.
She started getting a little down tonight about not being able to see her family and about realizing how long this treatment will be. She said she wasn't homesick but familysick. She really misses having her family all with her. And we are having many talks about the chemo and slowly introducing more of the facts. She got a bit overwhelmed tonight upon hearing that it will take 9 months for these first two parts and then a few years in all. Your prayers are being heard by Jesus and He continues to uphold her faith and strengthen her heart when the times are the hardest.
thank you


View the Chinese translation of this post here.

Today was our first "progress" report from the treatments. As I explained earlier we were praying that the index for blast cells (bad cells/Leukemia) would below 1 in like 10 million cells in order for her to stay in standard risk. Well, the doctor came back tonight with great news. Sarah's body has responded through the help of our gracious Lord and her number is ZERO. This does not mean she is completely free but it is below the microscopic level so now they are finishing the molecular test to see what it shows. We all rejoice at this great news of what God is doing!

Sarah started the IV chemo today. She had three different dosages of chemo. On a normal day it will only be one. I guess they want to blast the blasters! ok, I could not resist that one. As of tonight she is feeling a little sick to her stomach but she has not vomited.

It is great how God is using her devotion for Girls by Carolyn Larsen. Today was on the armor of God so we read Ephesians 6. She looked at me as she read the part about the fight is not against flesh and blood, but against the evil one. She knows the cancer is in her blood so this really hit home to both of us. We talked about what type of arrows the enemy is shooting at us now in order to try to destroy our faith. They were arrows of fear, anxiety, etc. etc. When we came to the hospital last week we brought her shield of faith pillow. This is being used today as we start feeling fear so we hold up our shield of faith to block the arrows. Anne and I bought this for her years ago and had no idea we would be in Hong Kong using this pillow to encourage Sarah through chemo.

All this has taken a toll on her ol' daddy. I was with Hannah yesterday and we stopped by Starbucks for a treat. I also bought coffee beans so we can make coffee at the hotel. Well, I walked off without my coffee beans. This morning when I walked back to Starbucks to see if they kept the bag for me, the guy just looked at me strange, but they did at least give me the coffee beans. It is amazing how life changes so fast. Sarah wanted me to start teaching her how to ride a bike without training wheels, but instead I am teaching her how to walk and push the IV pole. She loves for me to teach her how to work her new Macbook that her friends from Tung Chung bought her, but I never thought about her searching for wigs on the internet because she knows that she will probably lose her hair.

Yet, still God is good. I can't explain it totally, but I know with all my heart that God is good. As the Psalmist writes in Psalm 28:7 "The Lord is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving."
Blessings, Jay

Sunday, January 24, 2010

I Believe

View the Chinese translation of this post here.

We were glad to have a relatively quiet Sunday at the hospital since tomorrow (Monday) is the start of the more intensive chemo schedule. Please pray that the IV drugs go in painlessly and that the side effects are minimal.
Sarah and I read Psalm 139 today (below) and Sarah picked out her favorite verse to memorize. She picked, "For you formed my inmost parts. You knitted me together in my mother's womb. I praise you for I am wonderfully made."

You made all the delicate, inner parts of my body

and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.
17 How precious are your thoughts about me,O God.
They cannot be numbered!
18 I can’t even count them;
they outnumber the grains of sand!
And when I wake up,
you are still with me (NLT)

Sarah read in the Bible today that God made her just like he planned to from the beginning. That He planned these days of us in the hospital even before she was born. She read those words today and I saw her smile. She looked at me with excited eyes, knowing that those words were true! She the midst of her trial, she believes and is excited!
I can't say the same for me at the moment. I feel a bit down today. It is easy to stay in my previous understanding of God and my relationship with Him of 'I know He is in charge and I pray and live my life for Him.' But now that the foundation of that understanding and belief has been shaken, I am struggling with going to God for him to lift me up closer to him. It is a painful process, a lot like pruning is for a rosebush. The cutting hurts but the outcome is far greater than could be imagined beforehand. God is patient and faithful and I am glad the Bible says that He will never leave me or forsake me and that He will always lead me to green pasture and still water and restore my soul. My feelings waver by the minute so they have no substance to hold too. Thankfully, my God is strong and mighty and never changing. And even now, my soul stirs with a glimmer of hope and I can say like Sarah that in the depths of my heart, I do believe and I want to be excited, too. Lord, lift me up.

Friday, January 22, 2010

"Just in case I lose my hair"

Nana, Sarah’s grandmother, arrived last night. Sarah is so happy to have a change of scenery with her caretakers, I’m sure. Nana came bearing gifts and cards and new pink butterfly slippers! I don’t think Sarah will let Nana nap at all, so we must pray for her jetlag to be short and sweet.

Since all the children in the ward have lost their hair, it is hard to not think about that side effect of the chemotherapy. Sarah is starting to open up a little more about her thoughts on the subject. We started looking at wigs and she picked one she liked for ‘just in case she loses her hair.’ She picked a short one just to show me how we can cut it when it starts to thin so she can give it to Locks of Love to make wigs for others. She said she likes hats but just when she goes out somewhere that she would like to have hair, she might want a wig.

Sarah is having some issues with the strict diet control due to the culture and country and hospital. Sarah isn’t allowed anything but canned food. No fresh anything is allowed. So she is having tummy problems and the nurses keep telling us that her input isn’t matching her output. They said that this could really be a problem so please pray for these issues. We aren’t able to fully understand what the medical staff is talking about. Thank you so much for your continued encouraging words and support. God is using you all to hold us up each minute and protect our hearts from crushing with each breath.

Thank you.

Thursday, January 21, 2010

'Roid Rage

Sarah has been on steriods for the past few days and she is starting to get a little "pushy". She told Anne last night that she doesn't know why she says these things! We are trying to walk her through this process as more drugs are giving to her so she can understand that sometimes the medicine will make you feel this way, but God will still help us in self-control. At least we are wanting to believe the fruits of the Spirit are not pushed away.

Anne and I are taking shorter shifts because the amount of care is increasing so a 24 hour shift is too hard. Her mom arrives tonight so hopefully we can lower the shifts to 8 hours between the three of us.

Anne has also requested that I refrain from typing any technical information since I cannot spell correctly. :) haha Ok, I had to through that joke in.

Yesterday, a dear friend who is giving me biblical counseling through this journey asked me to meditate on John 14:1 "Do not let your hearts be troubled. Trust in God; trust also in me." It has been a week since we have been in the hospital and each morning our Father guides me to a verse about trust. This morning Sarah's devotion was on trust. At this point, I ask what is trust? To me, trusting in God means how we live our lives through this ordeal. Do we become angry at others, or love others? Do we keep our peace when the storm is raging in our lives? As I've been trying to process everything since the diagnosis, I've realized that we all have the same problem but we don't really want to think about it until we become sick. Jesus tells us we only have one day at a time. It does not matter if we think we have perfect health or if we are like Sarah with cancer. We all are in the same boat. No one knows if they will be here tomorrow. So to trust in Jesus during this time means we live for Jesus today. We share this hope with the parents in our ward. We share this hope with you. To me, this shows God that we trust Him with today and tomorrow.
I end with a few verses me and Sarah found comfort in last night. It is in Psalm 20 "7 Some trust in chariots and some in horses, but we trust in the name of the LORD our God.8 They are brought to their knees and fall, but we rise up and stand firm."

Wednesday, January 20, 2010

The pill battle

Being just 7 years old and not being sick much at all before in her life, Sarah has been having issues taking the loads of pills required of her multiple times a day. Last night, the nurse came with the dreaded little cup and Sarah refused to do it. So, I had to reluctantly put on my 'this is for your own good' voice and we talked through the drama and I had to threaten her that I was going to have to take drastic measures to get these down her throat. Finally she put it in and I coached her through the process. Right before she popped it in, she closed her eyes and I heard her whisper, "God, please help me do this." Then she took a sip of juice. Her eyes immediately popped open in surprise as she realized the pill went down easily. She is getting better and better at it now and the drama is almost gone. (Although, those of you who know Sarah well know that the drama will never be COMPLETELY gone. But this is part of her charm.)
Also last night we were on another floor since Sarah was recovering from her surgery to get her central line put in. On this floor, parents aren't really encouraged to stay but the nurse said if I wanted to stay I would have to pay and register myself as a patient. I said fine whatever it takes. Just before this all happened, Sarah had received a care package from some friends. In there was some amazing goodies for her and also an envelope for me with money in it. Right when the nurse left, Sarah looked at me and said, "Well isn't that great that God just sent us some money even before we needed it!" God really is taking care of every need, and many times the provision has come before the need arises! Oh, God, I praise you for you alone are worthy.

Tuesday, January 19, 2010

Specific Markers- 3rd Day at QM

Anne and I have been on 24 hour shifts for the last few days. (the other person runs errands like food and makes sure Rebekah and Hannah are ok.) The hospital will not allow visitors so it can only be me and Anne for now.
Last night was my first night at Queen Mary and little Sarah did not have a fun time. She is having problems taking pills and it is causing her to get sick to her stomach. The good news is we did find out that a light massage on her hips along with heat pads will make the pain go away. She did get rest and even though her body looks tired she is emotionally becoming a little stronger. (Early this morning she was so sweet. I was laying my head down on the bed as I was messaging her hip. I felt her sweet little hand rub the side of my face and she adjusted my face mask around my ear so it would not be tangled. It was her way of saying thank you daddy. A very sweet moment.)

This morning they inserted the line in her chest that will be used to give the chemo, drugs and take blood. This will make it easier for her as she is constantly worried the IV is coming out again.

Last night, Sarah and I talked a lot about being positive so we can handle all of this together. So I wanted to let everyone know that even though this has been a hard ordeal, God has been holding us. The first way is we caught this disease very early. She has pre-B cell acute lymphoblastic leukemia which is the easiest to treat for her age and the leukemia was not in her spine. All of these are signs she will make a recovery with the treatments. So we want to give you a few dates on your calender to pray for:
1. 25th of Jan- first progress report. An index number (sorry can't remember the name) needs to be below 1. She was a 4 when she arrived at the hospital. This will confirm her body is reacting the way it should and she will stay at a standard risk.
2. 1st of Feb- If spine test shows more progress, they will allow her to go home between treatments. (starting the 25th, treatments will be every alternating one, two or three days)
3. 2nd of Feb- The cytogenetics tests should be finished that will show if she is standard or high risk according to the final lab report.
4.. 22nd of Feb- This stage of the treatment is completed. The leukemia should be removed from her body and she would be termed as a "molecular recession". Then the battle for the next two years is to make sure it does not return.
5. 23rd of Feb- we would have two days to move Sarah back to the U.S. if the test are positive and show remission and if we felt like that is what God desired for the Clark family.

For Sarah's type of leukemia, it can be totally cured. If she does not have a reoccurrence in five years, the possibility is very low she will have problems again.
Anne can share more later but I wanted to let you know the dates so you can keep these in your prayers. Blessings, Jay

2nd Day at Queen Mary - by Daddy

One of the reasons I am using "Daddy" as my tag is that's the name used by more than Sarah Grace. It is how some of the nurses get my attention is to say "Daddy". So today was hard for Sarah. She is starting to feel the first affects of the chemo with nausea and she had pain in her hips most of the day. I feel so bad for her, but each time I am about to lose it, she says, "Daddy, please pray for me that the pain will go away." One time I was trying to get her to take some Panadol and she was too nauseous to drink anything and she said, "Daddy, it is Jesus who heals not the medicine." So Daddy is receiving a first rate theology lesson from my 7 year old daughter.
As I think about this, she is so right. Yesterday as the doctor walked through the next five weeks with us there are certain markers that will show the progress. In the end, he simply said we do not know if the medicine will work, but we can follow the progress. As I heard these words, I thought immediately that I know who makes the medicine work! It is our Lord, who continually asks me "Jay, are you going to trust me with today?" It is not by chance that last week, before Sarah contracted the fever, we were singing "Tis so Sweet to Trust in Jesus" for our family devotion time. Sarah and the entire Clark Family is challenged to trust, and Jesus is proving 'over and over'.
On a side note, one of our struggles is dealing with a high-stress situation in another culture. It is pushing me to my limits and I really need prayer for this. Even though medically they are taking "care" of Sarah with the same process, protocol and drugs as in the U.S., the other part is what I call "self-help". I've heated the pads to place on Sarah's hip, taken stool samples, cleaned vomit bowls and many times measured urine. Now the lady just showed me how to fold up and unfold the wheelchair so I can get it for Sarah to be moved. If we were at home that would be expected but in the hospital that is not expected, at least from me. Since the nurse just brought me a pill slicer, I assume my next task is slicing pills to a size Sarah can swallow. Seeking, Serving, Desiring my God of Peace,Jay aka "Daddy"

Jan. 19th

We are now in the new hospital and treatment started yesterday. Sarah is not happy about having to get poked with needles all of the time and she has had to have 4 IVs and multiple blood draws. She also really has a hard time swallowing all the pills they give to her through the day. She has had one dose of chemo and is taking lots of steriods to help her body cope. She starting vomiting already today and has a lot of joint pains. But she said today, "I feel sorry for that girl (the one in the bed next to her) because she is really bad off." Sarah continues to pray through each procedure, and God continues to uphold her. Her faith is being strengthened even now. Pray for her physical comfort and her spiritual strength - that she would know God is so near to her.

Jan. 15th

Thank you all for your emails and prayers. I have felt such peace and direction of God's hand leading us.
After many hours of discussion with the doctor at Children's Hospital Dallas and the doctors and such here and they finally all talked to each other - it has been decided that Sarah is not able to fly right now. It would be an unnecessary risk. The doctor in Dallas looked at the first round of treatment (5 weeks) and said the one here is very similar to the states and would be of the same benefit to Sarah. After that time if we feel emotionally and psychologically that she and the family need to come back to the States for the next phase of treatment (about 6 months), we can do that then and she will be at a much better place to fly, although pretty sick from chemo. The phase is shorter in the States - 5 -6 months and about 7-8 months here.
Then the last stage is the maintenance and can be done outpatient in Hong Kong.
My mother has graciously agreed to come here ASAP to help us through this. The hospital Sarah will be at is quite far from out home and a few islands away from us, but it is one of the best here. We will be moved Monday and the treatment will start. We will see if we need to move our family close to the hospital at that time.
We feel very good about this path that God is leading us on and are so very blessed to have such wonderful support from everyone on both the US and Hong Kong. It is helping in so many ways. Thank you.

Jan. 14th

We have just found out that Sarah Grace has Leukemia. We are still in shock but trying to figure out a plan of action. The treatment is two or so years of chemotherapy with the first 8 months being intensive. We have found that the survival rate in the States in higher than in Hong Kong so we are trying to get back there safely and quickly. Sarah is stable now. After the 8 months of treatment we can possibly do the rest of it in Hong Kong. Jay can go back a forth a few times during the eight months to continue all the work here and in Cambodia and India.
We have to decide fast and start treatment in the next few days. We are praying for God to guide us on how and where to do that. Please pray for us.

Jan. 13th

Sarah is in the hospital now after the blood results looked bad. They are doing lots of blood tests and bone marrow tests. It could just be a bad viral thing or it could be more serious things like a malignancy.

January 12, 2010

We have received some disconcerting news tonight about Sarah Graced. She has been
sick on and off for a month now and with a high fever again (104) today we took her to the doctor. They did some bloodwork since she looks so pale and
has the fever and vomiting and such. The doctor called us at almost midnight
tonight to advise us of several things, one of which is to go to the
hospital in the morning. We are a bit scared and not sure of what to do and
how to have good communication with the doctors.

Monday, January 18, 2010

Welcome to Sarah's Blog

Welcome to the care blog for Sarah Grace Clark. We will be adding all of the updates from the last week very soon. In the mean time, feel free to leave messages or prayers of support for Sarah. And, if you feel led, you can click on the Donate button on the side of the page to donate towards her treatment and the family's expenses.