Sunday, February 28, 2010

Rebekah turned 1 this weekend, and it was such a blessing to be able to celebrate such a happy event together as a family. The girls and I made her a cake (one for her and another for the rest of us to eat), and then the girls made her special cards. Both sets of grandparents were here for the occasion which made is so special.

This weekend Jay and I finally got to go to church together. The whole experience was quite painful actually. I had decided not to go and then that morning the girls were happy to stay with their grandparents - wonder why? So I went with Jay to church not really wanting to necessarily. The opening song was just the normal praise song that felt removed from me. I had decided to check out a bit and just go through the motions of the service, unable to sing or truly take part. Then the next song was "How Great Thou Art," a song written over 100 years ago and translated into tons of languages - the words are so rich and true - and it reminded me of another song written around the same time called "It is Well With My Soul." A man wrote this song after losing all his wealth and then losing all four of his daughters. I felt in good company with the writers of these two songs and I was able to sing along with tears. The next song was a recent one "How He Loves", that says 'He looves like a hurricane, I am a tree.' Someone in Hong Kong gave us this CD recently when we brought Sarah home from the hospital and this song has been ministering to our family. By this time, my tears obscured my vision and I felt God telling me over and over how He did want me there this morning and that He was right beside me, in the midst of my life and over it all. Then we took the Lord's Supper together which was yet another sobering real truth of Christ's love for us. I could no longer check out and had to admit that Jesus was meeting me in the depth of my pain and way inside my heart where I had retreated to. I felt like an angry, scared child with clenched fists and closed eyes and God was pulling my arms open and drawing me in to love and security. It was painful, and I thank Him for loving me enough to do it and to continue.

I am still grieving the life we had and the little girl I had. She is different now, changed somehow. I don't know if it is because of the chemical trauma to her body or the emotional trauma to her heart, but she is changed.

She is losing her hair quickly now, and she said that she is really sad that it is falling out. She doesn't cry; she just sits with a straight face and states that she is 'really sad' that it will all be gone. She has been the stable one though all of this. I am still having to use lots of energy everyday just to not break down and cry in front of her all the time. I want to help her have hope and not just be sad and nervous, so I pray for hope myself that I can help her have it too.

Oh Lord, I pray this brings her closer to you, that it brings all of us closer to you.

Thursday, February 25, 2010

Praise God!

We just received a call from the doctor with Sarah's results from yesterday's test. She is in total remission!!!! Praise God, from whom all blessings flow!

She started the next stage of treatment today. The next stage's primary goal is to make sure the Leukemia cells are not just "hiding", but that they are all truly gone and that they stay away. For the next 26 days, she will have a weekly spinal tap and take a chemo pill each night. We hope this will be much easier on her. Then we have 56 days of multiple kinds of chemo treatments then another "re-induction" of 33 days of harsh chemo. At that point she enters the maintenance stage which will last about two years. This will be a monthly chemo treatment, some steroids 5 days at a time and a couple of chemo pills every night.

As we finish the intensive treatments in a few months then move to the maintenance stage, the battle is to keep the Leukemia from returning. And we will not fear because we know our Lord and Savior Jesus, whose name is above all names, has the power to remove and stop Leukemia.

For now we are off to party and celebrate! I've bought a lot of Blue Bell Ice Cream, every topping you can think of and we are ready to thank the Lord for His continued blessings in our lives.

Thanks for your prayers and please keep praying for Sarah and our family. As the realization of the last month and a half comes to us, the anxiety is increasing. Now our test of faith is to trust that Jesus will keep this from returning and Sarah will be totally cured. We've been told they announce that they are cured after five years of being in remission or cancer free, so we now set out on this marathon which requires trust and faith.

Tuesday, February 23, 2010

In the Garden

Since we arrived in Texas, Sarah has been in the 'garden' (for us Americans this translates into 'backyard') as she calls it now that she has spent almost half of her life in Hong Kong. She has loved the freedom of being outside and of not wearing a mask.
Today we visited the new hospital and met our new doctor. Sarah was nervous (and actually we were too) to be meeting new medical people yet again. But the whole experience was so great from the wonderful doctor, a great lady who also has two little girls, to the great nurses who joked and laughed with Sarah, to the play therapist who let Sarah put an actual needle into the heart catheter of the chemo patient doll and explained all procedures, to the social worker who is getting us some much needed support. A little girl in the next room even let Sarah come in a see her port a cath, the kind of central line they use here, and watch as she got her blood taken and her medicine put in. Then the little girl's mom prayed for us all before we left the room. It has been an amazing day. Sarah's blood results continue to rise, and she is doing really well which is good since they are about to start chemo again and knock all those good numbers down again.
We go tomorrow to have her spinal tap and last chemo of this first phase. Then they will give us a more detailed road map of the months to come.
We are slowly getting out of jet lag, but that is the main reason for why you haven't heard from us recently. Everyone is just so out of sorts and Rebekah doesn't seem to be responding to my detailed explanations of jet lag and why she needs to start sleeping when it is dark outside instead of when the sun is just coming up.
This whole journey has taken such a toll on us physically and of course emotionally, and we are so blessed to have such support from all our friends and family. We have experienced such sacrifice and love from so many around us. The Bible says in Psalms that God helps the poor and needy. We are definitely in that category and truly have received so much help from God. We all are really always in this category compared to the perfection of God and I am happy to be so, since it says that God helps those people. I am always in need of God's help and so very happy that He so freely gives it. You just humble yourself before Jesus and look to Him for, well...everything. That is abundant life and in that is such relief from anxiety and fear and sadness. And I am in great need of such relief.

Thursday, February 18, 2010

We made it!

Thank you for your prayers. God was so merciful to us and worked out all the details in advance. We are excited to be in our new home and so thankful to be part of the family of God. Jay

Wednesday, February 17, 2010

Across the Pacific Again!

Next Saturday, Feb. 27th, Rebekah will turn 1! After the flight tomorrow, she will have flown over 25,000 miles in her first year of life. When we returned to Hong Kong in December, Anne and I both said we hope it would be another year or two before we had to make the trip again. Well, it has been two and a half months, and tomorrow we go back across the Pacific. It is going to be long and stressful with Sarah's condition so please keep us in your prayers.

We leave Hong Kong with heavy hearts. Not just because of Sarah, but because we feel Hong Kong is home. We will miss everyone in Hong Kong and will continue to pray for these islands. Yesterday over 75,000 people gathered at a temple to see what their fortune would be this year, the year of the tiger... 75,000 people who are placing their trust in random drawings of sticks and other ceremonies. We are trying to understand why God would take us back to the U.S. when so many filled with hopelessness are walking around Hong Kong hurting to know the One who is Hope. Anne and I trust that God's purpose is good and that our time in the U.S. is one to bring our family closer together to return stronger than ever. But our hearts are heavy because we know we have no control over the timing and ability to return. So much is unknown which is not any different than when Sarah was healthy, but now it is so apparent in our daily lives. In the end, we know the only place of certainty is in the shadow of the Almighty.

Over the last few days, I have been listening to a new CD given to me. It is called Church Music by David Crowder Band. There is a song titled "Shadows". This song has brought me closer to Jesus over the last few days and I rejoice. The words are:
Life is full of
light and shadow
O the joy and O the sorrow
O the sorrow

And yet will He bring
Dark to light
And yet will He bring
Day from night

When shadows fall on us
We will not fear
We will remember

When darkness falls on us
We will not fear
We will remember

When all seems lost
When we're thrown
and we're tossed
We remember the cost
We rest in Him
Shadow of the cross

The next blog will be from our new home in Allen, Texas, USA. Blessings, Jay

Leaving Hong Kong

I can't believe we are moving across the ocean...again. We have been back and forth from Hong Kong quite a few times now carrying nine 70lb suitcases/boxes. I think I am getting a little better at it, but it is still a hard process. Sarah is a bit down tonight because her hair really starting coming out as we washed it. I think it will all be gone soon. She was really sad at first but then looked as if she is accepting that it will happen. I, on the other hand, don't think I am going to be able to handle it. She just doesn't look like herself already - bloated tummy, puffy face, wrinkled and dry hands and feet. And she doesn't smile much since she is constantly nauseous and tired. I know the hard part is just beginning, but I feel like we have been through the worst nightmare already.
We fly out in the morning to the States. So for the next 36 hours, please pray for us as you remember our travels. Hannah had a stomach bug in the wee hours of the morning today complete with running out both ends. It has been a rough day, but so far her quarantine has kept the rest of us free of the stomach bug.
Even in the midst of these circumstances, God is tangibly leading us and providing for our needs through all of you who continue to take care of us, those here in Hong Kong who have helped us get to this point and those in the States who are preparing for our arrival. We have never felt such love from so many.
Thank you , thank you.

Monday, February 15, 2010

The Drive to Queen Mary Hospital

Our drive to the hospital is unfortunately quite frequent, but it takes us across several islands as we go through a toll, a bridge, a tunnel through a mountain, another bridge, anther toll, a tunnel under the water, up a big mountain, in another short tunnel, and up a small but steep mountain. Here are a few pics of the journey.

It has been nice to have such beautiful views on the way to the hospital. There is nowhere like Hong Kong. The trip to the hospital won't be as scenic in Texas, but I do know that it will be shorter, which is also a good thing.

Sunday, February 14, 2010

Going to Texas

I don't know why I ever doubt. God always provides for our needs. He has done so once again and has provided for some wants as well - just because He can and because He loves us so much.
The owners (who are Chinese, by the way) of a great house not far from the hospital have agreed to rent us their house. We have been referred to a nice doctor in America at the Children's hospital and Sarah already has an appointment for her treatment to begin there. Through our last small group in America, we now have a car to use and many others are helping to get other odds and ends we will need when we arrive! We are once again overwhelmed by God's love and provision.
The newest development is that through the amazing efforts of a friend here in Hong Kong, we were able to get Sarah a very comfortable airplane seat. And after some more maneuvering, our whole family is now together on the plane. But the crazy part is that it isn't the one leaving on the 23rd like we previously thought. It is now the plane leaving on Feb. 18th!
So, I am panicking just a bit trying to pack and tie up loose ends. But our wonderful church and friends here in Hong Kong have assured me that anything I need that I had to leave, they will ship to America for us! I just feel so blessed by all our 'family' here in Hong Kong has done for us and continues to do.

Friday, February 12, 2010

A long day

Yesterday was by far one of the hardest and longest days of this journey. The hard part had nothing to do with Sarah's health as she did well with yet another chemo treatment, and the prayers for limiting the side effects from chemo are being answered. Praise God for that.

The stress was in an unexpected twist in our plans. All along we felt that if we could go back to the U.S. that was the best option for our family. Being a third-culture leukemia patient and the parents of a child with Leukemia in another country has been unbearable at times. All of the stress came to a head yesterday as we received good news from our doctor at Children's Hospital in Dallas. With Sarah's numbers looking so good, they have a treatment plan with a lower/less toxic dosage of chemo for the remaining 6 months of intensive treatment. The problem is that the doctors in Dallas need to confirm that this option is doable from the bone marrow test scheduled on the 19th. This would be Sarah's final treatment in HK. In discussing this with the doctors in HK, who have been great to us, we found out that HK does not lower chemo and will continue to give Sarah high chemo doses even though she is a low risk. Since they continue with the same dosages, they do not really depend on the bone marrow test on the 19th because it takes them two weeks to receive the results back. Thankfully Dr. Furlan from Dallas was able to talk to me while I was at the hospital with Sarah. He said he would try to have Sarah scheduled for the bone marrow test in Dallas on the week of the 22nd.

This development led to stress point number two. The flights returning to Dallas. With Chinese New Year starting this weekend, this is the peak travel time. A group of people donated miles so Sarah, Anne/Rebekah were able to not only get a free flight but they will be in business class so Sarah can be comfortable and more secluded. (Cathay has the lay down seats with your own little cubicle). The problem is we thought we needed to move the flights earlier (we still might). But around 3am my time I found out that Dr. Furlan was able to make Sarah an appointment in Dallas on the 24th for the bone marrow test. She has to be put to sleep for this procedure so it is stressful for her and she wants to do it in the US because she, for some reason, wants a Chick fil A sandwich after the procedure (since she has to fast the night before), if the doctor allows it.

So somewhere around 4:30am, I was able to relax enough for a couple hours of sleep. In the midst of all this came stress point number three - our housing in Dallas. This has been a total nightmare as the good houses (clean, not much carpet, near the hospital) go so fast it is hard for us to get them. Along with the fact that the rental market is hot because many people can't buy homes. Even though it is for a short time, we feel a home will be better for us since we will be in virtual "house arrest" during the treatments. This way we can have a backyard for Sarah to go out and play without contact with other kids who could pass along their germs.

In all of this, God is giving us the fruit of endurance to keep focused on Sarah and our family. Finding out that the next phase of treatment is less toxic in the US compared to Hong Kong has encouraged us that making the decision to go back to the States is the right one. We hope to be settled soon and able to keep in touch with everyone -through 'virtual' means at least.

Wednesday, February 10, 2010

God's Timing

We wanted to thank you for your prayers. The central line was not infected so we left the outpatient ward in 1 hour.

Last night God did a wonderful thing for Sarah. After going through the stress of seeing her beautiful hair falling to the floor, we came up with the idea to save some in a bag to remind us. When she was going to bed we were looking through her Bible for verses of encouragement and I was trying to find a verse in Jeremiah 31. Sarah then decides to read Jeremiah 32 to me. She did a great job reading and at the end we all just looked at each other and could not believe it. The application was so obvious for us. This chapter was when God led Jeremiah to buy land and to place the deed in a jar so the remnant would have faith that one day God would bring them back to Israel and they would own land again. Wow! It was just as loud as if God was saying it to Sarah!

We all felt God saying "Sarah, your hair will come back! Keep it in the bag to remember my promise!" It still brings chills to me. What a Great God!

On a funny note, Sarah always wants me to take pills with her. Each morning, lunch and night she has around 6 pills to take. I have used many things like marshmallows, jelly beans and Reese's pieces. The other day I was not at home and Hannah wanted to encourage her sister. The problem is that Hannah has never taken a pill so when she tried to swallow the marshmallow (small one from the cereal) she started choking and we realized this was not a good idea. So we are all learning that there are limits in how we help Sarah! haha

Tuesday, February 9, 2010

Haircut Day

Sarah had her hair cut tonight. We have been talking about the fact that her hair will fall out and that it would be easier if it wasn't so long. Also, we have talked about donating it to Locks of Love where they make wigs for other children with cancer. Sarah was excited to be helping someone else and she thought it was funny that God would use her head to grow hair that he planned to give to another child who didn't have any.
A dear friend connected us with a local hairdresser who agreed to come to our apartment since Sarah's immune system is still so low. The hairdresser was a wonderful Christian lady who made Sarah feel beautiful and special. Sarah did such a good job being strong and brave through it all. And only at the end did her eyes drop and her face fell with tears coming down. She was grieving the long hair she'd lost.
I reminded her of the great service she is doing for another child who will be able to have hair beautiful hair and that helped her smile somewhat. Sarah is really becoming such a servant in our family. She wants to set the table and plan the meals and make as much as she can. She is making bead jewelry for everyone and she has started a recipe box with recipes she is writing that are allowed for cancer patients on strict diets. She wants to make a cookbook.
We have been at the hospital yesterday and today for the regular chemo appointments, but they said we need to come back tomorrow to check Sarah's central line (the tube going into her heart where they connect the IV) because it looks like it might be infected. Sarah isn't very happy about going to the hospital three days in a row.
She does get down at times as this process continues on and on and as she realizes more about what it means to have cancer. It has been hard for me to even say the 'c' word. I still can't allow myself to fully take it in for fear that I won't be able to recover from the sadness. I have learned by experience now that God really never leaves you even if you aren't working very diligently to stay by Him. It shows me that it hasn't ever been me at all but He is the one who all along has done all of the holding on and the staying close and the drawing near.

Friday, February 5, 2010

Opening the Roof

This week has been a wonderful week to have Sarah return home and for her to enjoy time with her sisters. Tomorrow, we return for another chemo treatment. We only have five more to go in this stage so through the grace and mercy of our Father it is going much faster than I thought it would.

The week has brought more tests. It has been extremely hard for me and Anne as we have to make the grueling decisions for the future. We asked Jesus a simple request. Open the door if you want us to return to the U.S. for the treatments. The doors have been opening, but that also means we have to try to somehow move our lives again, which we are not very excited about. (This includes Sarah who, like the rest of the family, loves Hong Kong and our home and church and life here.) Yet, sometimes God's plans are not always what we like, but He asks us to work out our faith with fear and trembling.

In our devotion this morning, we read the story of the friends who opened up the roof of the house to lower their friend down to Jesus in order to heal the man. It does not seem that Jesus was surprised by this act, but it took a great amount of faith and strength for the friends to go through all of that painful love in order for their friend to receive healing. (They probably thought, "Why did we have to do all of this when Jesus could have healed him when He walked by?") While we were finding ways to apply this story to our life, we realized that sacrificing for Sarah was part of our ministry and love for Jesus. We as a family are opening the roof for Sarah in order to show Jesus' love in our family. This means all of us sacrifice to be part of the healing process. I believe these friends show the glory of Jesus in their faith just as much as the healing. The great thing is that there are many friends with Sarah, and at times it feels like you are all picking up the entire family and lowering us to Jesus for all of us to be healed (physically and emotionally).

The reason I have not written much this week is because the current task God gave me has been difficult. He has led me to preach the next two weeks to our wonderful brothers and sisters at Tung Chung Church. It is really a testimony that will, I pray, allow people to see the Real Jesus, our current series, as He has comforted us in our troubles. 2 Corinthians 1:3-7.

Wednesday, February 3, 2010

First Outpatient Chemo

We went back to the hospital today for outpatient chemo and everything still looks the same so we got to go home once again. The schedule of outpatient chemo at the hospital is as follows: Feb. 6, 8, 9, 12, 15, 19. We get to the hospital in the morning and stayed until late afternoon going through all the stations of blood pressure, weighing, temperature, blood taking, chemo and get new pill prescriptions while they monitor Sarah for a couple of hours after the chemo is given. It was an exhausting day on many levels. Thanks to all of you that are continuing to follow up on us and continue to send godly encouragement both practical and emotional. When I am tempted to doubt or tempted to despair or just tempted to general gloom and weakness, all of you that have so steadily upheld us remind me that God is here, present in the works of his people. Thank you for being the hands and feet of Jesus to our family who desperately needs it.
This is a picture of Sarah in her 'new room'. She was sad to be separated from her sister, but it was best to put her in a room of her own. And thanks to a family in our church, this was made possible when they purchased a new bed for Sarah and the most comfortable mattress she has ever had! And thanks to one of the mom's in our homeschool group, Sarah has hot pink curtains and fuzzy pillows to match! This made Sarah so happy, and now she is enjoying being the big sister with a whole room of her own.

Monday, February 1, 2010

Welcome Home

After fasting all night and morning and then being put to sleep for a spinal tap and then a spinal injection and then having some blood drawn then getting two intravenous chemo drugs, one of which is unstable in light so it must be completely covered, then getting transfused with some extra platelets because her platelet level was so low (11), Sarah was cleared to go HOME!
We couldn't believe they were just letting us take her out the front door. Felt like taking our first newborn child (which was Sarah over 7 years ago) home from the hospital. Even though the hospital experience has been so hard, it has become a security in a way for all of us. It didn't help our nervousness that Jay had to run around the hospital going to the pharmacy to get the multiple medicines Sarah must take many times a day and then to the patient opshop (or whatever the nurses keep calling it) to get tape and gauze for Sarah's central line in her chest. Then they give us the direct telephone line and the paper for readmission in case Sarah gets a 38 degree fever or above, has any bleeding, feels really badly or the exit site of her central line gets infected.
What has been amazing all day is that Sarah hasn't been nauseous once today, even on the ride home! It has been so nice to have our whole family together again. As I sat at dinner and looked around at everyone at the table, for a split second, I forgot what we are going through and about the long road ahead. It still just seems so unreal until I see the bandages on Sarah's neck and the tube coming out of her chest and the tiredness in her eyes and her pale skin.
The next thing to be praying about is the cytogenetics tests that should be back this week sometime that will be able to tell us if the disease came from a chromosome mutation. We go back Wed. and then Sat. for more chemo and each time they will take blood so we can see the progress.
Being back home is great and our cupboards and refrigerator have never seen so much food! Thank you all for the abundance we now have. We feel very, very taken care of.
Thank you all.