Wednesday, April 28, 2010

Back to the Clinic Today

Sarah woke up this morning with not much fever at all, if any. But as the morning progressed, it started inching up. We still had high hopes of not having to go in to the clinic at the hospital though so I took all three girls to Hannah's dance class at 10:30am, while Jay did some much needed errands, but he told me to call him at any moment and he would come. When we arrived, another teacher, not Hannah's normal teacher, was waiting for me to tell me that this week was costume fitting week and so most of the class would be for talking to the parents about the recital and fitting costumes. (as she talked I had to keep taking Sarah's temp. which was staying high) Well, since we just arrived in this country two months ago and since Hannah just joined this month, it was too late to order a costume and therefore she can't be in the recital. We knew all of this before, but I had no idea about today's class so I wasn't able to prepare Hannah. The sub teacher did a little intro. with the girls in class so I asked another mom, who I have met once before, to hold Rebekah as she was whining and squirming to get down, while I kept taking Sarah's temp. which was again high so I had to call and report this to the clinic. They said I would have to bring Sarah in for more IV antibiotics. I was prepared with the numbing cream in my purse for Sarah's port and I also brought the press 'n seal. So, as I was trying to get the cream on is when it was time for the parents to come in to the class to start recital discussions so Hannah was having to come out by herself and the mom holding Rebekah had to give her back to me. Hannah was a bit sad about it all and cried a little telling me she just wants a pretty costume and wants to dance on a big stage. Rebekah was flattening her body to be able to get down on the floor and play and Sarah was whimpering that the cream and press 'n seal was itching her skin. At this point, I was on the verge of tears in the middle of the dance studio waiting room.
As we drove to the clinic, I did call Jay, but said that although I was in tears at the moment, everything would surely be better once we got to the clinic. The girls talked me into McDonald's drivethru (ya, now you know how much of a basket case I really was!), since it was lunch time and we got to the clinic where the great nurses helped so much and set us up in an infusion room with a crib for Rebekah and a TV with World World on! Sarah did great with accessing her port but poor Hannah might have nightmares tonight as she watched the huge needle being pushed into Sarah's skin and moved around to find the right spot for blood to come out and antibiotics to go in.
I am so glad that a dear friend brought dinner tonight as another did on Monday or else our family would be eating cereal more times in a row than usual.
We are all home again tonight and very thankful for that. Sarah's blood counts were unusually high, 10 for white blood cell, which made me worry. A kid with Leukemia doesn't have numbers like that. But the doctor just said it was her body probably trying to fight whatever infection she has and it wasn't a relapse. I just keep my mind on the hope side of that - sometimes using lots of my energy to do so.
We did have a fun time tonight on the living room floor as a family just playing around and Rebekah took 4 steps! Now at least I can not worry so much about her lack of walking:)
Oh, and Hannah got some mail today. Since Sarah gets so much these days, Hannah is having the normal issues of middle child plus being the sibling of a cancer kid. So we signed her up for SuperSibs, a program for siblings of cancer kids. She gets mail every now and then and today she got a package with a trophy with her name on it and and inscription praising her for being so brave and loving ,etc. I have attached a picture of her holding her trophy. It is not sleeping beside her (hopefully not in the actual bed) as she wears a huge smile.

Tuesday, April 27, 2010

At Home

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

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

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

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

Monday, April 26, 2010

Another ER run

We are in the hospital tonight. Sarah has been feeling unwell these past couple of days and her temperature finally rose to the magic number of 101.5 where we have to call the hospital and the hematology-oncology doctor on call said to bring Sarah in. I did try to convince the doctor that Sarah probably isn't neutrapenic (good white blood cells lower than 500) so we could just go to the Legacy hospital campus and not go all the way downtown. The doctor agreed and so we are at least close to home.
Her blood numbers looked like her body was trying to fight the virus or whatever she has, but she needs a little help. So they are giving her IV antibiotics, fluids and they are checking her output for a while longer to make sure she isn't too dehydrated since her heart rate has been elevated above normal since we arrived at the ER. She is feeling better now with all the medicine though.
It has been a bit traumatic tonight though as they had a hard time accessing her port (the thing under her skin that is connected to her heart) to draw blood and then give antibiotics and such. So we had lots of tears and sadness since it took over 30 minutes or so with lots of pushing and moving the needle around and such. Even with all of that, Sarah did so well. With big tears coming down, I saw her flinch when they kept having to push the needle far down and all around to try and find the right spot. She never screamed out loud although I saw she wanted to. Such a brave girl.
Hopefully we will be all settled back home soon.

Wednesday, April 21, 2010

Sarah woke up from a nap yesterday with a handful of hair to give me, which is actually a somewhat normal occurrence around here. But she was more upset than usual saying that her head was itchy all the time and her hair was stringy and felt dirty. She had asked to shave it before but I put it off. Now she was determined. So since we needed to go to the Survival Gal Salon anyway to have Sarah's wig thinned and fitted, I called to see if they could also shave her head. They said they could do everything we needed and could take her in an hour. I was nervous getting us all in the car and nervous all the way there. I just couldn't come to terms with it all. When we pulled up to the salon, I realized that Hannah hadn't put any pants on, which I told her to do, after her nap. So we arrive with one emotional mama, one hungry baby (I had to wake Rebekah up to make the appointment and didn't have time to feed her yet), one child with no pants and one child determined to get her head shaved!
Sarah wanted to look at first as the lady started to shave it, but quickly decided that was too scary and so turned around and held me hand the entire time. Afterwards, it took her quite a while to get comfortable with having a totally bald head. She still isn't liking it all the time, but she said that she really didn't have a choice since it was almost gone anyway and it felt itchy and stringy. She also got her wig fixed and purchased a pink sparkly scarf head covering.
I was successful in holding it together in the salon and even in the car from the girls' point of view anyway since they were in the back and my tear face was looking forward. I have teared up a few times since then and the flood gates have threatened to open, but I still haven't had the opportunity to fully let out my feelings.
Sarah had her spinal tap today along with her IV drip chemo and injection chemo. She did so well. She didn't even flinch this time when they had to draw blood from her arm. I was so proud of her. Her counts remain good - 1900 ANC, 123 liver.
It took her a little longer to wake up this time from anesthesia so I had more time than usual to sit beside her bed and rub her now bald head as she was unconscious and hooked to lots of beeping machines. I did cry a bit then, but still remained mostly composed as the nurse was still monitoring Sarah's vitals.
Thank you all for your continued care for us. It would be a much lonelier road without you. Thank you.

Saturday, April 17, 2010

blood count update

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

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

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

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

Wednesday, April 14, 2010

An interview with Sarah

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

Interview with Sarah Grace Clark

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

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

2. Describe your days when you have treatment?

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

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

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

4. what do you miss about hong kong?

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

5. What is the scariest part of having Leukemia?

Getting needles in me

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

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

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

Sunday, April 11, 2010

Update on today's treatment

Sarah did well with her chemo today. She has to have her blood drawn first thing every time we go for treatment so the doctors can see if her blood counts are high enough for her to get chemo. She is always nervous and has asked to have her finger pricked each time which means they have to squeeze her poor finger for a long time to get all the vials of blood they need and the little hole turns into a long gash by the end of it all. Today they needed more blood for a few more tests, so we talked it over about using the vein in her arm this time. With just a few tears and a few extra minutes to compose herself, Sarah agreed to have the blood drawn from her arm. We love Katrina in the lab and were so happy to have her again today. Katrina did a great job and Sarah was happy she gave the arm a try.
The initial count was borderline today (900) but they thought it would be fine (has to be over 750) when the specifics came back from the lab, so they started the chemo. Later in the day when we were in the infusion room, the specific numbers came back and her ANC, the good white blood cells, was 690. (a good ANC is 1500 and can go as high as 8000 for normal people. Below 500 is really bad.) So it turns out, had they known it was so low, they would not have given her the chemo today. But it was already done, and the dose was upped today according to the protocol. In a way, I am glad that we didn't have the specific numbers back so that we could go ahead with the chemo and not have to wait and come back another day and delay this whole 2.5 year process. But I hope it doesn't bring her numbers down so low that she gets an infection.
Sarah is feeling so very tired, which is normal for a treatment day, and since her treatment this morning, she has only eaten two Dora popsicles, a few yummy organic strawberries and baby tomatoes that our neighbor brought us and a few bites of homemade bread from another wonderful friend we haven't even met yet.
We coaxed her to take her anti-nausea meds tonight, and I hope she can sleep through the night.
We have to go back to the hospital on Friday to get her blood counts checked again. And we are in a tighter lockdown now with her ability to fight off disease being so low.
The best numbers we did get back were her liver enzymes. A couple of weeks ago that was over 600 (normal is below 50). Last week it was down to 430 and today it was 90! So that is very good news. Her liver is working better and better!
A few of you are asking how I am doing lately - I found my phone in the bottom of the washing machine this morning as I was putting damp clothes from last nights laundry marathon into the dryer. That sort of sums it up.
In normal circumstances I am introspective and contemplative to a fault, and I tend to hide away there at times. So now you know where I have been lately instead of writing on this blog:)
We are still in shock sometimes that this is now our life. We thought being on the mission field on an island in the South China Sea was being stretched and molded by God. That seems like nothing compared to now.
It truly has been hard, a hard blow to faith and ideas of love and care. His presence is still here and near to us though and so we wait - for healing, for the other, for Him either way.
But my mother's heart is truly broken.

Saturday, April 10, 2010

Unbelief of a father

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

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

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

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

Sunday, April 4, 2010

It is Finished!

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

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

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

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

Friday, April 2, 2010

Sisterly Affection

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

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