Here are some of the comments I've heard lately:
She sure is a lucky girl!
I've heard Sarah is just sailing right through this!
I think someone should write a book about Sarah called, "How to behave in a BMT (bone marrow transplant) room. (The doctor said this, and he was talking about how she continued to take her medicines and things the whole time. None of the other kids ever are able to do that.)
Wow! Most kids have so many mouth sores they just drool all the time!
I can't believe how well she is doing!
Maybe by the middle to the end of this week you will be able to go home.
She is doing amazingly well!
Sooo...remember in my last post a couple of days ago when I said as soon as Sarah was feeling better I would probably cry with joy all day?? Well, today I came pretty close to doing just that! Although really more than crying I felt like singing! I had the old GLAD song, "Glory to God in the Highest" in my head all morning. The acoustics in this room are really great, and it was all I could do to stop myself from bursting out in song--especially when I was in the shower! But as much as I do want to shout to the world how good God is, I didn't want anyone hauling me away in a straight jacket or anything. ; ),
The news is...Sarah's counts starting really going up yesterday. Today her white blood cell count is 1300, with an ANC of over 700. That's the number they give the body's estimated ability to fight infection. Over 500 is good. So, we are all pretty ecstatic! If it stays up for 2 more days, Sarah gets to leave the room, get visits from brothers, etc. And if all continues to go well, we might get to leave next week! That is less than the average stay of 4 weeks. Oh, I hope that is what God has in mind!! Before she leaves, she has to be eating on her own. Yesterday she already ate about 6 or 7 bites of pizza! Today nothing yet, but she has been drinking more.
Sarah only had one mouth sore and only 5 bad days. And as bad as they were, sadly, most kids have it even worse. I talked to one dad of a little girl Sarah's age who did this over the summer. She had mouth sores so bad, that she didn't talk or eat for 3 weeks. : ( What a horrible thing this strong chemo business is, but yet, God has chosen for it to be the way some people are healed. I can only hope that the havoc it wreaked on Sarah's little body is wreaking the same havoc and worse on those cancer cells' hineys!!
Sarah is doing so well, and she is pretty much sailing through, and it is amazing!! Yesterday and today she is playing, smiling, and even laughing! But is she lucky? No way! Luck has nothing to do with it, folks. Our great and mighty God has His hand on Sarah. He mercifully kept her time of pain and discomfort short--I know it was because so many are praying! And I think it is because He has special mercy on this sweetheart who has gone through so much in her very short life. God is so good. I just praise His name!
Our prayer requests now are that she will still not get sick, that she will start eating regularly, and of course that the tumor is going to be GONE. And as Sarah would say, "Thank you very much!"
Sunday, October 31, 2010
Friday, October 29, 2010
One day at a time
On we go, day by day.
At times it seems that Sarah is doing so much better, she is almost her old self. And there are times when she is so miserable she seems out of her mind. And all I can do is sit helplessly by. I know that when she is back to normal--on that first wonderful day--I will probably cry for joy all day long.
How I love that sweet baby girl.
At times it seems that Sarah is doing so much better, she is almost her old self. And there are times when she is so miserable she seems out of her mind. And all I can do is sit helplessly by. I know that when she is back to normal--on that first wonderful day--I will probably cry for joy all day long.
How I love that sweet baby girl.
Wednesday, October 27, 2010
Living through the tough times
So, we are at day 6 post transplant. At the risk of sounding like I am looking for sympathy, I will tell you a little about what it's like for us at this point. Imagine:
Your baby has a temp. hovering a little over 101 that subsides with tylenol, only to bounce back up for over 2 days.
She has diarrhea over and over again, multiple times a day and through the night.
She hasn't eaten any solid food, only sips of drinks here and there, since Monday. She is being fed intravenously.
She complains of her tummy hurting and wants you to rub it--pretty much all day long.
She doesn't want to play and doesn't smile for most of the day.
She wakes up from her nap feeling nauseous and spitting out saliva and mucus because she sometimes doesn't want to swallow.
Your two hospital stay tag team-mates cannot come and be with your baby at the hospital anymore because they have colds, or what might be colds, so you stay there for days without leaving.
You are pretty much unable to nap here at the hospital.
Your baby's white blood cell count jumped up from 80 to 290....back down to 80 again. : (
And that was my day!
I promise I didn't tell you all that to make you feel sorry for us. It is true that today was the worst day over all. A combination of things caused it, the biggest culprit being that annoying temperature she has that won't go down (that they say is very common post transplant), and getting her pain medication situation figured out. Hopefully by tomorrow we will be able to have it controlled better.
Honestly, we are okay. First of all, Sarah, as most children are, is very resilient. She can be moaning with pain one second, and then the next when the medication is working, she will be totally fine and playing, like she forgot all about it. That first bad day that almost did me in, she was vomiting so pitifully. I thought I would never survive this ordeal. As soon as she was done, I asked her how her tummy was feeling, and she paused a second, and said with a cute little hand gesture, Feeling fine. : ) And was soon playing as if she forgot all about it. Tonight after a day of feeling lousy, the meds kicked in, and she was singing and doing the motions with Barney, reading books happily with Mommy, and playing with her new doctor set, as if everything was normal. As hard as it is to watch her suffering, I know she is really coming through this okay. And, as bad as it is, everyone assures me that still she is doing so much better than most! She is still talking, playing a little, and taking her medicine fine. Things unheard of in almost all transplant kids. Also, still no sores in her mouth, although we do think they have crept up to her throat, and so she is not swallowing as much anymore.
And I am okay too. I have learned a few things. First, God gives mothers the patience and strength to handle things like this. It is truly not too hard. It is tiring, but it feels natural. It's simply what moms do. I love being here with Sarah, hugging her, cuddling her, rocking her when she needs me. I am sooooo happy to be her mom, and to be able to help lift some of this burden from her.
And I've learned that it truly truly is in these times, that God gives you His most intimate, loving presence as a gift to show you that He truly is sufficient. If you just allow Him, He really will surround you with His peace. It is so easy to draw close to Him. It feels like He is just sitting on the hospital room couch, waiting for me to have a free minute to come and spend time with Him, and as soon as I do, He is right there, filling my soul. How I treasure these quiet times with Him, away from the sometimes chaotic life that I normally live, away from television, telephones, responsibilities and the stuff of the world. Just focused on Him, thanking Him for all He is and all He gives, and praying for my girl, knowing that He has her in His hands.
And that is why we are okay. Because even though sometimes things are not good, it does not mean that God is not good. We can make it through anything because He is with us, loving us through. He can do the same for you. I hope you will trust Him today.
Thank you for praying for us! I am praying for a better day tomorrow, and it won't be long until this will all be a memory and we will be on our way home again!
Your baby has a temp. hovering a little over 101 that subsides with tylenol, only to bounce back up for over 2 days.
She has diarrhea over and over again, multiple times a day and through the night.
She hasn't eaten any solid food, only sips of drinks here and there, since Monday. She is being fed intravenously.
She complains of her tummy hurting and wants you to rub it--pretty much all day long.
She doesn't want to play and doesn't smile for most of the day.
She wakes up from her nap feeling nauseous and spitting out saliva and mucus because she sometimes doesn't want to swallow.
Your two hospital stay tag team-mates cannot come and be with your baby at the hospital anymore because they have colds, or what might be colds, so you stay there for days without leaving.
You are pretty much unable to nap here at the hospital.
Your baby's white blood cell count jumped up from 80 to 290....back down to 80 again. : (
And that was my day!
I promise I didn't tell you all that to make you feel sorry for us. It is true that today was the worst day over all. A combination of things caused it, the biggest culprit being that annoying temperature she has that won't go down (that they say is very common post transplant), and getting her pain medication situation figured out. Hopefully by tomorrow we will be able to have it controlled better.
Honestly, we are okay. First of all, Sarah, as most children are, is very resilient. She can be moaning with pain one second, and then the next when the medication is working, she will be totally fine and playing, like she forgot all about it. That first bad day that almost did me in, she was vomiting so pitifully. I thought I would never survive this ordeal. As soon as she was done, I asked her how her tummy was feeling, and she paused a second, and said with a cute little hand gesture, Feeling fine. : ) And was soon playing as if she forgot all about it. Tonight after a day of feeling lousy, the meds kicked in, and she was singing and doing the motions with Barney, reading books happily with Mommy, and playing with her new doctor set, as if everything was normal. As hard as it is to watch her suffering, I know she is really coming through this okay. And, as bad as it is, everyone assures me that still she is doing so much better than most! She is still talking, playing a little, and taking her medicine fine. Things unheard of in almost all transplant kids. Also, still no sores in her mouth, although we do think they have crept up to her throat, and so she is not swallowing as much anymore.
And I am okay too. I have learned a few things. First, God gives mothers the patience and strength to handle things like this. It is truly not too hard. It is tiring, but it feels natural. It's simply what moms do. I love being here with Sarah, hugging her, cuddling her, rocking her when she needs me. I am sooooo happy to be her mom, and to be able to help lift some of this burden from her.
And I've learned that it truly truly is in these times, that God gives you His most intimate, loving presence as a gift to show you that He truly is sufficient. If you just allow Him, He really will surround you with His peace. It is so easy to draw close to Him. It feels like He is just sitting on the hospital room couch, waiting for me to have a free minute to come and spend time with Him, and as soon as I do, He is right there, filling my soul. How I treasure these quiet times with Him, away from the sometimes chaotic life that I normally live, away from television, telephones, responsibilities and the stuff of the world. Just focused on Him, thanking Him for all He is and all He gives, and praying for my girl, knowing that He has her in His hands.
And that is why we are okay. Because even though sometimes things are not good, it does not mean that God is not good. We can make it through anything because He is with us, loving us through. He can do the same for you. I hope you will trust Him today.
Thank you for praying for us! I am praying for a better day tomorrow, and it won't be long until this will all be a memory and we will be on our way home again!
Monday, October 25, 2010
God is good all the time...
And all the time, God is GOOD!
Here's the entry I read yesterday in my devotional book, Jesus Calling, by Sarah Young:
Psalm 34:8--Oh, taste and see that the Lord is good. Blessed is the man that trusteth in Him.
Taste and see that I am good. The more intimately you experience Me, the more convinced you become of My goodness. I am the Living One who sees you and longs to participate in your life. I am training you to find Me in each moment and to be a channel of My loving Presence. Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me.
Thank Me for the gift of My Peace, a gift of such immense proportions that you cannot fathom its depth or breadth. When I appeared to My disciples after the resurrection, it was Peace that I communicated first of all. I knew this was their deepest need: to calm their fears and clear their minds. I also speak Peace to you, for I know your anxious thoughts. Listen to Me! Tune out other voices, so that you can hear Me more clearly. I designed you to dwell in Peace all day, every day. Draw near to Me; receive My Peace.
I wanted to share that with you because it was such a breath of God to me yesterday. We sailed through last week, and everyone was becoming so optimistic that Sarah might escape the worst of what this chemo typically (okay, nearly ALWAYS) does to people. The chances were so slim that she would come out of it with no problems, but yet I knew God could DO IT! And He could have. But, God's ways are not our ways, and He chose to let us experience some of what the other families do when they go through this valley. Yesterday morning, Sarah starting having some nausea and vomiting on top of the little bit of other tummy problems she was having. It turns out that she did start getting the dreaded mucositis--sores that normally run from the mouth all the way down the digestive tract. She did not get them in her mouth or esophagus yet it seems, and that is still a huge blessing, but the stomach ones are causing her pain and nausea. So, they started putting her on all kinds of medicines now to keep her comfortable. It was rough at first--quite honestly one of the worst days I have experienced. But now it seems the problem is pretty much under control. Thank the Lord for this modern age of medicines! The drawback is, she is so sleepy all the time. That's really not too bad of a problem though, as long as she is comfortable.
So, even though I am disappointed, I am still happy that she lasted as long as she did, which means that she won't have as long of a time to suffer. The doctor says probably by the end of this week she could start feeling better already! We are certainly hoping so and praying to that end.
We are so thankful for the gift of peace that God gives so freely when we trust Him and accept it. We can't always know the "why's," but we can know His perfect peace at all times. And that, we have found, is truly the best gift of all.
Blessings to you today!
Here's the entry I read yesterday in my devotional book, Jesus Calling, by Sarah Young:
Psalm 34:8--Oh, taste and see that the Lord is good. Blessed is the man that trusteth in Him.
Taste and see that I am good. The more intimately you experience Me, the more convinced you become of My goodness. I am the Living One who sees you and longs to participate in your life. I am training you to find Me in each moment and to be a channel of My loving Presence. Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me.
Thank Me for the gift of My Peace, a gift of such immense proportions that you cannot fathom its depth or breadth. When I appeared to My disciples after the resurrection, it was Peace that I communicated first of all. I knew this was their deepest need: to calm their fears and clear their minds. I also speak Peace to you, for I know your anxious thoughts. Listen to Me! Tune out other voices, so that you can hear Me more clearly. I designed you to dwell in Peace all day, every day. Draw near to Me; receive My Peace.
I wanted to share that with you because it was such a breath of God to me yesterday. We sailed through last week, and everyone was becoming so optimistic that Sarah might escape the worst of what this chemo typically (okay, nearly ALWAYS) does to people. The chances were so slim that she would come out of it with no problems, but yet I knew God could DO IT! And He could have. But, God's ways are not our ways, and He chose to let us experience some of what the other families do when they go through this valley. Yesterday morning, Sarah starting having some nausea and vomiting on top of the little bit of other tummy problems she was having. It turns out that she did start getting the dreaded mucositis--sores that normally run from the mouth all the way down the digestive tract. She did not get them in her mouth or esophagus yet it seems, and that is still a huge blessing, but the stomach ones are causing her pain and nausea. So, they started putting her on all kinds of medicines now to keep her comfortable. It was rough at first--quite honestly one of the worst days I have experienced. But now it seems the problem is pretty much under control. Thank the Lord for this modern age of medicines! The drawback is, she is so sleepy all the time. That's really not too bad of a problem though, as long as she is comfortable.
So, even though I am disappointed, I am still happy that she lasted as long as she did, which means that she won't have as long of a time to suffer. The doctor says probably by the end of this week she could start feeling better already! We are certainly hoping so and praying to that end.
We are so thankful for the gift of peace that God gives so freely when we trust Him and accept it. We can't always know the "why's," but we can know His perfect peace at all times. And that, we have found, is truly the best gift of all.
Blessings to you today!
Friday, October 22, 2010
So Happy...
Sorry it's been a few days...This new life is interesting. At the hospital it's pretty quiet and slow. But I can't really blog at the hospital because of the computer I have there. Then I come home and it's a rush to see how much I can fit into the few hours I have here. Blogging doesn't always make the cut!
But I can't even begin to tell you how ecstatic I am at how Sarah is doing. We have prayed and we have trusted. God loves to answer our prayers when they fall into accordance with His Will, and He is definitely answering our prayers!! Every day I wake up and wonder if this will be the day that Sarah feels bad/ gets mouth sores/ stops eating/ stops talking/ all of the horrible things they said that we can expect--things that every child going through this procedure has to go through. But still, thus far, Sarah's appetite is down, and sometimes she is a little cranky (pretty much just when she's tired, though), but the doctors and nurses are amazed by how well she is handling all of this! Pretty much she is still our Sarah, loving life as much as she can. : )
Yesterday was the big day! Stem cell transplant day! Really it was anti-climactic. Scott and I weren't even there when she had it. (Cassandra was there.) The whole thing takes about 20 minutes. They simply put her stem cells in an IV bag, and they go into her broviac tubes just like all her chemo, medicines, blood products when she needs transfusions, etc. And those stem cells get to work making new bone marrow. I just have to throw something in right here....
Just sit and meditate on that for a minute. Sit and read a book about the body and meditate on it for a while sometime. Seriously, isn't it a MIRACLE what the human body can do?? The next time you get a cut, watch it day by day as it heals. Imagine bones healing. The liver can become whole when there is just a part. Think about the immune system. (Be thankful for it, by the way!!) Your white blood cells and antibodies are cruising around your body this minute ready to attack anything that is not supposed to be there. This amazing healing power is only one of countless miraculous functions of the human body. When I remember that many people think our bodies just slowly evolved that way...they sure have a lot of faith. Faith in the great power of Time and Chance. Hmmmmm...
ANYWAY, so Sarah got her cells back, and that means the countdown is on until we will be able to get out of the hospital! No, we don't know when that will be yet. We have to see when her blood cell counts start going up. She got her first red blood cell transfusion today. Isn't that another pretty cool thing? That if we need blood, we can simply use someone else's?? Some of these things that we are so used to in this age of medical marvels really are amazing when you stop and think about it. I never get tired of being amazed by things. : )
So, praise the Lord with me, because He has been so good to us! And please keep praying that our baby continues to see good days.
And here she is having fun when she is "supposed" to be lying around...
But I can't even begin to tell you how ecstatic I am at how Sarah is doing. We have prayed and we have trusted. God loves to answer our prayers when they fall into accordance with His Will, and He is definitely answering our prayers!! Every day I wake up and wonder if this will be the day that Sarah feels bad/ gets mouth sores/ stops eating/ stops talking/ all of the horrible things they said that we can expect--things that every child going through this procedure has to go through. But still, thus far, Sarah's appetite is down, and sometimes she is a little cranky (pretty much just when she's tired, though), but the doctors and nurses are amazed by how well she is handling all of this! Pretty much she is still our Sarah, loving life as much as she can. : )
Yesterday was the big day! Stem cell transplant day! Really it was anti-climactic. Scott and I weren't even there when she had it. (Cassandra was there.) The whole thing takes about 20 minutes. They simply put her stem cells in an IV bag, and they go into her broviac tubes just like all her chemo, medicines, blood products when she needs transfusions, etc. And those stem cells get to work making new bone marrow. I just have to throw something in right here....
Just sit and meditate on that for a minute. Sit and read a book about the body and meditate on it for a while sometime. Seriously, isn't it a MIRACLE what the human body can do?? The next time you get a cut, watch it day by day as it heals. Imagine bones healing. The liver can become whole when there is just a part. Think about the immune system. (Be thankful for it, by the way!!) Your white blood cells and antibodies are cruising around your body this minute ready to attack anything that is not supposed to be there. This amazing healing power is only one of countless miraculous functions of the human body. When I remember that many people think our bodies just slowly evolved that way...they sure have a lot of faith. Faith in the great power of Time and Chance. Hmmmmm...
ANYWAY, so Sarah got her cells back, and that means the countdown is on until we will be able to get out of the hospital! No, we don't know when that will be yet. We have to see when her blood cell counts start going up. She got her first red blood cell transfusion today. Isn't that another pretty cool thing? That if we need blood, we can simply use someone else's?? Some of these things that we are so used to in this age of medical marvels really are amazing when you stop and think about it. I never get tired of being amazed by things. : )
So, praise the Lord with me, because He has been so good to us! And please keep praying that our baby continues to see good days.
And here she is having fun when she is "supposed" to be lying around...
Light finger, she calls it : )
Putting on her froggy hugs..
Ready to play!
Jumping!
Bowling in my cute, new froggy jammies from Cassandra
I think I'll have better chances if I use two balls. : )
I'll give you another update again soon!
Tuesday, October 19, 2010
October 19--A Special Day!
Hello friends, family, and lurkers, : )
Today is a pretty special day for several reasons. First of all, it's my birthday! For obvious reasons, we couldn't do too much for it yet, and that is totally okay. I got presents from Cassandra, the boys put up decorations and made me cards and a little gift, and Scott and I will go out as soon as we get a chance. : )
Second, today is Sarah's FOREVER FAMILY DAY!! Exactly one year ago today we received one of the greatest blessings of our entire lives--the gift of our precious Sarah Ting. Words really can't express how special she is to all of us. How she has brought joy to every one of our days since we met her. I remember so clearly how I felt God whispering to me when I was afraid of the unknowns while considering her paperwork, that He was going to bless us with this girl. I remember the peace that came over me as I knew without a doubt that whatever the future held, no matter how overwhelming or unexpected, it would not matter. She would be a blessing to our family. Well, at first it sure seemed that all my fears were unfounded. She was perfect in every way. No developmental problems. No trouble with that small blind eye. No bonding issues. No temper tantrums. No sleeping issues. Smiles every day. Such an adorable little peanut, and smart as a whip. Our entire family completely smitten. : )
Then the diagnosis of cancer came as a shock on that first day of June, just a few months ago. It rocked our happy little world, but it certainly didn't stop it from being a happy one. God has continued to keep His promise to me. Sure, things have gotten tougher, but never once have we even thought for a minute that God has not overwhelmingly blessed us every single day with our girl. I am so very, very grateful.
Little update from this morning at the hospital: Sarah's white blood cell counts are still over 1,000! Eventually they will dip down to 0, but she's still doing great with that. No mouth sores yet. She didn't mind her baths, even the ones in the middle of the night. Normally kids at this stage are not eating at all anymore. (They start losing their appetite as the full force of the chemo hits them.) Sarah's not eating much, but she is still eating some. A big praise! She is more tired, but not feeling miserable by any stretch. She hasn't had any nausea that we can tell. The doctor today said that she is handling this chemo better than most kids. I was thinking, Yeah, but she probably has more people praying for her than most kids. Thank you so much to all who are praying! (And while you are praying for Sarah, say a quick one for the other kids on our oncology floor too.)
So... happy birthday to me! It's been a great day. : )
Today is a pretty special day for several reasons. First of all, it's my birthday! For obvious reasons, we couldn't do too much for it yet, and that is totally okay. I got presents from Cassandra, the boys put up decorations and made me cards and a little gift, and Scott and I will go out as soon as we get a chance. : )
Second, today is Sarah's FOREVER FAMILY DAY!! Exactly one year ago today we received one of the greatest blessings of our entire lives--the gift of our precious Sarah Ting. Words really can't express how special she is to all of us. How she has brought joy to every one of our days since we met her. I remember so clearly how I felt God whispering to me when I was afraid of the unknowns while considering her paperwork, that He was going to bless us with this girl. I remember the peace that came over me as I knew without a doubt that whatever the future held, no matter how overwhelming or unexpected, it would not matter. She would be a blessing to our family. Well, at first it sure seemed that all my fears were unfounded. She was perfect in every way. No developmental problems. No trouble with that small blind eye. No bonding issues. No temper tantrums. No sleeping issues. Smiles every day. Such an adorable little peanut, and smart as a whip. Our entire family completely smitten. : )
Then the diagnosis of cancer came as a shock on that first day of June, just a few months ago. It rocked our happy little world, but it certainly didn't stop it from being a happy one. God has continued to keep His promise to me. Sure, things have gotten tougher, but never once have we even thought for a minute that God has not overwhelmingly blessed us every single day with our girl. I am so very, very grateful.
Little update from this morning at the hospital: Sarah's white blood cell counts are still over 1,000! Eventually they will dip down to 0, but she's still doing great with that. No mouth sores yet. She didn't mind her baths, even the ones in the middle of the night. Normally kids at this stage are not eating at all anymore. (They start losing their appetite as the full force of the chemo hits them.) Sarah's not eating much, but she is still eating some. A big praise! She is more tired, but not feeling miserable by any stretch. She hasn't had any nausea that we can tell. The doctor today said that she is handling this chemo better than most kids. I was thinking, Yeah, but she probably has more people praying for her than most kids. Thank you so much to all who are praying! (And while you are praying for Sarah, say a quick one for the other kids on our oncology floor too.)
So... happy birthday to me! It's been a great day. : )
Sunday, October 17, 2010
About baths and diapers....
Well, last night and today began to get more interesting.
Sarah had to start taking a chemo drug that excretes through the skin, so she has to take baths every 4 hours during the day, and once in the middle in the night. Good news: she likes baths. Bad news: she has to take lots of them. She also has to wear nothing but roomy, cotton shirts, and nothing that can irritate the skin. So, one of the nurses last night told us that she would have to wear----CLOTH DIAPERS!
She brings in this huge pile of them, and that was a good thing because I quickly discovered you have to change those things like every few minutes. Overnight it wasn't too big of a deal, at least for me, because the nurses had to do all the changing of the diapers and the bedding. (Well, the cloth diapers were their idea!) But this morning when my poor, tired baby woke up after having been disturbed half the night, and taking a bath to boot, she still had to wear these crazy diapers that don't actually work, and take another bath. : ( Mommy was tired too, of course, and in no mood to deal with having soaked pants from holding my cuddly baby on my lap. Also, there was no way she could be up and around in those things, since they would never stay the way you put them, and she couldn't even walk right. It was ridiculous. (Yes, I know there are nicer ones out there that have velcroes and do dads, and fit children nicely, but we did not have those. I'm pretty sure the size Sarah had on was an infant size!)
Finally, a different nurse came in who saw our plight and said we could use disposables, but ones a couple sizes too big so that they wouldn't be too tight. I was praising the Lord for sure! But I was also a bit worried since the other nurse had said it was imperative she wear cloth ones. Oh, the things we have to leave in the Lord's hands. So many things.
She had a pretty good day today still. We can tell she gets tired much sooner than usual, but still she was her happy self most of the day. The doctor told us that most kids have stopped eating already at this point in the treatment, and Sarah still eats some, and he was happy that she hadn't started getting mouth sores yet. She enjoyed most of her baths, except when she was getting really tired at night.
That little girl is a trooper, that's for sure.
I was starting to get really tired myself, so I was so, so happy when Cassandra came early in the day and let me have the rest of the day off! Scott and I went out to lunch, and then he went to the hospital, and I stayed home!!! It felt so good to snuggle with my boys on the couch watching a movie, and my bed is going to feel like pure paradise. : ) There is no place like home!
These pics are from yesterday before she started wearing her white t-shirts...
And these are of the view out our 7th floor window.
Blessings to all of you! Be thankful for everything, including little things like full nights of sleep, comfy beds, only having to take one bath a day, and the convenience of Pampers. : )
Sarah had to start taking a chemo drug that excretes through the skin, so she has to take baths every 4 hours during the day, and once in the middle in the night. Good news: she likes baths. Bad news: she has to take lots of them. She also has to wear nothing but roomy, cotton shirts, and nothing that can irritate the skin. So, one of the nurses last night told us that she would have to wear----CLOTH DIAPERS!
She brings in this huge pile of them, and that was a good thing because I quickly discovered you have to change those things like every few minutes. Overnight it wasn't too big of a deal, at least for me, because the nurses had to do all the changing of the diapers and the bedding. (Well, the cloth diapers were their idea!) But this morning when my poor, tired baby woke up after having been disturbed half the night, and taking a bath to boot, she still had to wear these crazy diapers that don't actually work, and take another bath. : ( Mommy was tired too, of course, and in no mood to deal with having soaked pants from holding my cuddly baby on my lap. Also, there was no way she could be up and around in those things, since they would never stay the way you put them, and she couldn't even walk right. It was ridiculous. (Yes, I know there are nicer ones out there that have velcroes and do dads, and fit children nicely, but we did not have those. I'm pretty sure the size Sarah had on was an infant size!)
Finally, a different nurse came in who saw our plight and said we could use disposables, but ones a couple sizes too big so that they wouldn't be too tight. I was praising the Lord for sure! But I was also a bit worried since the other nurse had said it was imperative she wear cloth ones. Oh, the things we have to leave in the Lord's hands. So many things.
She had a pretty good day today still. We can tell she gets tired much sooner than usual, but still she was her happy self most of the day. The doctor told us that most kids have stopped eating already at this point in the treatment, and Sarah still eats some, and he was happy that she hadn't started getting mouth sores yet. She enjoyed most of her baths, except when she was getting really tired at night.
That little girl is a trooper, that's for sure.
I was starting to get really tired myself, so I was so, so happy when Cassandra came early in the day and let me have the rest of the day off! Scott and I went out to lunch, and then he went to the hospital, and I stayed home!!! It felt so good to snuggle with my boys on the couch watching a movie, and my bed is going to feel like pure paradise. : ) There is no place like home!
These pics are from yesterday before she started wearing her white t-shirts...
And these are of the view out our 7th floor window.
Blessings to all of you! Be thankful for everything, including little things like full nights of sleep, comfy beds, only having to take one bath a day, and the convenience of Pampers. : )
Saturday, October 16, 2010
Coolest job ever
I wish I had a picture to go with this post today. I will try to add one later. I would like to introduce you to a man named Rhys (pronounced Reece. Like the best candy ever. Great name, I know.)
Rhys is the Child Life coordinator on Sarah's hospital floor. His one and only job is to make kids happy! I know, I know. It's a dirty job, but somebody has to do it. ; )
Some of Rhys' difficult jobs are making sure the playroom is stocked and in decent shape, making sure kids have plenty of things to play with in their hospital rooms, (yesterday he brought this really fun book that makes into a floor puzzle with a train track that a little wind up train drives on) and planning fun activities. On the 4th of July they brought popsicles and took us up a few floors to watch the fireworks out the windows. There was a big ice cream taste testing party once. Yesterday there was a big fingerpainting party up on the 9th floor. Like I mentioned the other day, there are therapy dogs that come now and then. Sometimes the zoo brings cool, exotic birds or other exciting animals. Once, some of the White Caps (our minor league baseball team) came down the halls signing autographs. I saw pictures of kids with a few of the Rockettes around Christmas time. If someone has a birthday, volunteers make big signs to put on the doors. Any book or movie can be tracked down. Nothing is too hard for the amazing child life team! ; )
Anyway, yesterday as I was leaving to go home, I saw Rhys walking down the hall with an enormous bunch of humongous rainbow balloons. He looked like he would float away if he went outside. I wondered what that was all about, but I had to miss the fun. Turns out, every kid on the floor got a big rainbow balloon yesterday.
When I grow up, I wanna be what Rhys is!! How did I miss my calling??
Rhys is the Child Life coordinator on Sarah's hospital floor. His one and only job is to make kids happy! I know, I know. It's a dirty job, but somebody has to do it. ; )
Some of Rhys' difficult jobs are making sure the playroom is stocked and in decent shape, making sure kids have plenty of things to play with in their hospital rooms, (yesterday he brought this really fun book that makes into a floor puzzle with a train track that a little wind up train drives on) and planning fun activities. On the 4th of July they brought popsicles and took us up a few floors to watch the fireworks out the windows. There was a big ice cream taste testing party once. Yesterday there was a big fingerpainting party up on the 9th floor. Like I mentioned the other day, there are therapy dogs that come now and then. Sometimes the zoo brings cool, exotic birds or other exciting animals. Once, some of the White Caps (our minor league baseball team) came down the halls signing autographs. I saw pictures of kids with a few of the Rockettes around Christmas time. If someone has a birthday, volunteers make big signs to put on the doors. Any book or movie can be tracked down. Nothing is too hard for the amazing child life team! ; )
Anyway, yesterday as I was leaving to go home, I saw Rhys walking down the hall with an enormous bunch of humongous rainbow balloons. He looked like he would float away if he went outside. I wondered what that was all about, but I had to miss the fun. Turns out, every kid on the floor got a big rainbow balloon yesterday.
When I grow up, I wanna be what Rhys is!! How did I miss my calling??
Friday, October 15, 2010
So far, so good...
Happy Friday, everyone! I am having a great day. The sun is shining, the leaves are absolutely, incredibly beautiful, and Sarah is happy and well. I thought you would enjoy some pictures...
And this is what the drive home looks like. I love our city...
And this is what we see when we come home...
God is so good to give us all this beauty to enjoy! You know, He could have made the leaves stay green, or just turn straight to brown. The best things in life really are free, and everyone can enjoy them!
Thank you for continuing to support us and pray for us! (That's another wonderful thing that's free.) : )
And this is what the drive home looks like. I love our city...
And this is what we see when we come home...
God is so good to give us all this beauty to enjoy! You know, He could have made the leaves stay green, or just turn straight to brown. The best things in life really are free, and everyone can enjoy them!
Thank you for continuing to support us and pray for us! (That's another wonderful thing that's free.) : )
Wednesday, October 13, 2010
Done with day 2 of the hospital stay...
It's 8:11 pm. I am home waiting for laundry to get done so I can get back to the hospital. It's annoying that I have to wash Sarah's separately from the rest of the family because it means extra loads. I suppose it's a small price to pay for one less thing to worry about, though.
Yesterday went great. Everyone on the floor was so excited to see Sarah. They all really love her, and I must admit it's with good reason! : ) She did get to come out of her room yesterday and today and until her counts start dropping, so we took advantage of that. They brought some therapy dogs around the floor just to see the kids, and they were so cute. Too bad Sarah's eye just happened to be bothering her at the time because I know she would have loved them.
Last night, Sarah slept wonderfully through all the multiple times people came into our room. Too bad Mommy didn't. : (
Today was another good day. She started chemo, but so far felt no effects from it. We took another walk around the floor, played in the playroom, and brought big lego blocks back to our room. She loved them, and spent lots of time making really tall towers, "clinic houses" and water spouts. And of course her stuffed purple spider spent lots of time climbing the water spouts. Oh yeah, and she built lots of hospital scales. Including all the time she spends playing with the stethoscope, "temperature," froggy hugs and putting on gloves, most of Sarah's play time is usually medical related. I suppose that's a good thing?
Finally, around naptime, Cassandra came to relieve me, and I came home to do school with the boys. That went pretty well, actually. I think this schedule is going to work.
I am really so very thankful.
Thankful for the first rate hospital we live so near.
Thankful that our room has a beautiful view, and it's fall.
Thankful that we have a comfy mat on our floor to play on. I was thinking it was just going to be a month of a cold, hard floor.
Thankful for the nurses and other staff.
Thankful that it's FALL. I absolutely LOVE it! (Did I already mention that?)
Thankful that we can take turns at the hospital.
Thankful for the people who are bringing us meals!
Thankful for Sarah.
Thankful for God.
Dear friends, I will mention this now, and probably many many times. God is the reason we are getting through this. He is everything we need and everything we could ever want. He loves to bless those who trust Him, and we have seen it happen countless times. I don't mean by "blessing" that everything will always go our way. I wouldn't even want everything to always go my way. I want things to go HIS way, because I know His way is best. Once you understand this, it puts everything in perspective, and you can let go of any worry or fear. I am looking at this whole experience in terms of the eternal perspective. He is teaching us so much. He is drawing us so close to Him. We can rise above all our circumstances if we just keep our eyes off of the frightening things around us, and focused on Him and the finish line. Small things like extra laundry? It's really no big deal. Big things like a bone marrow transplant? He's got it covered.
And so, I'm thankful. And I am loving having some relaxing time just hanging out at the hospital with my girl. : )
Yesterday went great. Everyone on the floor was so excited to see Sarah. They all really love her, and I must admit it's with good reason! : ) She did get to come out of her room yesterday and today and until her counts start dropping, so we took advantage of that. They brought some therapy dogs around the floor just to see the kids, and they were so cute. Too bad Sarah's eye just happened to be bothering her at the time because I know she would have loved them.
Last night, Sarah slept wonderfully through all the multiple times people came into our room. Too bad Mommy didn't. : (
Today was another good day. She started chemo, but so far felt no effects from it. We took another walk around the floor, played in the playroom, and brought big lego blocks back to our room. She loved them, and spent lots of time making really tall towers, "clinic houses" and water spouts. And of course her stuffed purple spider spent lots of time climbing the water spouts. Oh yeah, and she built lots of hospital scales. Including all the time she spends playing with the stethoscope, "temperature," froggy hugs and putting on gloves, most of Sarah's play time is usually medical related. I suppose that's a good thing?
Finally, around naptime, Cassandra came to relieve me, and I came home to do school with the boys. That went pretty well, actually. I think this schedule is going to work.
I am really so very thankful.
Thankful for the first rate hospital we live so near.
Thankful that our room has a beautiful view, and it's fall.
Thankful that we have a comfy mat on our floor to play on. I was thinking it was just going to be a month of a cold, hard floor.
Thankful for the nurses and other staff.
Thankful that it's FALL. I absolutely LOVE it! (Did I already mention that?)
Thankful that we can take turns at the hospital.
Thankful for the people who are bringing us meals!
Thankful for Sarah.
Thankful for God.
Dear friends, I will mention this now, and probably many many times. God is the reason we are getting through this. He is everything we need and everything we could ever want. He loves to bless those who trust Him, and we have seen it happen countless times. I don't mean by "blessing" that everything will always go our way. I wouldn't even want everything to always go my way. I want things to go HIS way, because I know His way is best. Once you understand this, it puts everything in perspective, and you can let go of any worry or fear. I am looking at this whole experience in terms of the eternal perspective. He is teaching us so much. He is drawing us so close to Him. We can rise above all our circumstances if we just keep our eyes off of the frightening things around us, and focused on Him and the finish line. Small things like extra laundry? It's really no big deal. Big things like a bone marrow transplant? He's got it covered.
And so, I'm thankful. And I am loving having some relaxing time just hanging out at the hospital with my girl. : )
Monday, October 11, 2010
Last night before our hospital stay...
Taken yesterday--New haircut..ready to go to the hospital!
Well, I feel....hmmmm....not sure how I feel. Not really ready, somewhat relieved that the end is in sight, sad about what is in store for my precious girl, feeling the weight on my shoulders about keeping germs away for so many weeks, sad that our routine will be all hunky dorey for a while and wondering if my boys will be okay with it all. Tonight I teared up as Josh and Ben came in like they do every night while I was rocking Sarah, to give her hugs and kisses and tell her good night. The other day Josh said he was going to miss getting her out of bed in the mornings. (Yes, he often beats me to it!) This is going to be tough. And yet underneath it all I feel completely, strangely at peace.
Today she had a very rough day because she had one last eye exam to check that dumb tumor, and one last cryotherapy--this time mainly to irritate the tissue so that the chemo will work more effeciently. She was in more pain than ever afterward because the doctor had to make an incision in her cornea this time. Even the morphine wasn't making a dent. : ( Finally some Tylenol 3 did the trick--sort of. It felt like foreshadowing to me, because they have told me that one of the worst side effects of this chemo will be pain from the sores in her mouth, esophagus and intestinal tract. We are just leaning, leaning on the Lord!
Also, I talked with the doctor and he told me that he is very optimistic about this treatment. He also told me, though, that if she makes it through this, she will be a miracle girl! Um...that was not very comforting. I am pretty sure he meant that it's a miracle that she's done so well already, but still...
Anyway, from the beginning of all of this we have put it in God's hands. And it is still there.
And one more thing....
Don't you just love people who make this world a nicer place just because they are in it? I appreciate every one, from the friendly man with the permanent smile who works at our post office to the drive through worker at McDonalds who does her best to treat you well. And I just have to say that we have been so blessed by people along this journey. Friends and family who are praying, and people we don't really even know who go out of their way to pray for and encourage us. Also, the doctors and nurses on this journey with us-- they are just angels in disguise. I can't say enough about their kindness, and genuine love and concern. Some of these nurses have been doing this job for 30 years, and still they care so deeply, even to the point of having tears in their eyes over our sweet girl. Precious, precious people. So much like Jesus. I am so glad that this old world is still not so bad that there are genuinely kind people out there doing their part. And there really are a lot of them!
And so, the next time I post will most likely be from our new "home." I will tell you all about how it goes. Just stay tuned...and please do be praying for us. You will never know how wonderful it is to know that people are praying.
Saturday, October 9, 2010
Family pictures
One of the things on my to-do list before the big day Tuesday was to take pictures of the kids, and maybe a family picture. I realized that since we have brought Sarah home almost a year ago, we have only taken TWO pictures of all the kids together. And we really haven't even tried at all to get a nice one. The main reason is that it is so hard to get it all together. You know what I mean. The outfits. Everyone's hair having been cut recently. Nice weather outside. Everyone home at the same time. No grumpiness about having to have pictures taken...Normally it just seems easier to NOT do pictures. : )
But today we accomplished the goal! And they turned out pretty okay I think, considering the fact that we took them ourselves and don't really have much of a clue about how to do photography.
So, we got some like this...
Okay, I admit they are all really cute of Sarah, and that's why I decided to show them to you even though they didn't make the final cut.
And we got some "nice" ones...
And the last thing I wanted to tell you is a big answer to prayer! Yesterday Sarah and I were at the hospital where she was getting tests done. (She's had quite a few of those lately.) Some of the blood work from earlier had shown a positive test for what could be a live infection, and that could postpone the date we would go into the hospital. We REALLY don't want that to happen. Well, they did more tests, and yesterday the results showed NO sign of infection!! HOORAY!!!!
So we rejoiced and enjoyed our gorgeous fall Saturday, and by the state my house is in today you can tell we did nothing much but enjoy the weather...
Have a wonderful Lord's Day tomorrow, everyone!
But today we accomplished the goal! And they turned out pretty okay I think, considering the fact that we took them ourselves and don't really have much of a clue about how to do photography.
So, we got some like this...
Okay, I admit they are all really cute of Sarah, and that's why I decided to show them to you even though they didn't make the final cut.
And we got some "nice" ones...
The funny thing was, the reason Sarah was laughing her bottom off in those first pictures was because we mentioned that she gets to go to the clinic on Monday! She is one funny girl. : )
The other fun thing that happened today was that Jacob got to fly in a little plane for a homeschool field trip! It was a perfect, beautiful day, and they were up in the air for about a half hour! (Josh, the middle boy, could have gone too, but he chickened out when we got there, and then regretted it later. It was really too bad he missed it.)
And the last thing I wanted to tell you is a big answer to prayer! Yesterday Sarah and I were at the hospital where she was getting tests done. (She's had quite a few of those lately.) Some of the blood work from earlier had shown a positive test for what could be a live infection, and that could postpone the date we would go into the hospital. We REALLY don't want that to happen. Well, they did more tests, and yesterday the results showed NO sign of infection!! HOORAY!!!!
So we rejoiced and enjoyed our gorgeous fall Saturday, and by the state my house is in today you can tell we did nothing much but enjoy the weather...
Have a wonderful Lord's Day tomorrow, everyone!
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