Talitha was admitted to the PCMC this morning to begin her next bone marrow transplant cycle. Everyone is upbeat and staying positive.
As you may recall from her last transplant round, two very strong chemotherapy drugs are administered on her first two days (i.e. today and tomorrow) to fight the cancer beyond the level that the bone marrow can tolerate. As the bone marrow dies, Tali will be given a "transplant" of her own stem cells previously harvested and kept preserved in the storage freezer. This is intended to rescue her by re-introducing the building blocks she needs to grow new bone marrow.
Because one of the chemotherapy drugs--Thiotepa--excretes through the skin, Tali will not have her central line protective bandage on as that would trap the toxic excretions and burn her skin. She will have three baths a day through Monday to help wash these toxins off regularly.
Please pray for Tali. This is a very vulnerable stage and we feel that only Heaven can keep her truly safe after all we and the wonderful hospital personnel can do to be watchful, attentive, and protective.
One of the trainers in my company shared some wonderful advice along these lines. Often when faced with life and its experiences we'll say "I'll do my best." But our best is so limiting.
What if instead we said, "I'll do God's best." Or said differently, "I'll trust that God can take me beyond my best and so I'll do what He wants me to do, and be what He wants me to be--even if in the moment I don't understand."
When Moses stood at the water's edge, he didn't say "I'll do my best." He waited upon the Lord and was an instrument in doing God's best--parting the waters of the Red Sea.
I believe as we allow ourselves to let go of our inherent fears and limitations and hold fast to our faith in Christ, we too can be instruments in the Lord's hands to part the seas of challenge this world has no answers to. After all, God is really good at saving His children--especially when we cooperate.
So let's put more trust--even reckless trust like Moses had--in Him. It really works!
Friday, April 30, 2010
Thursday, April 29, 2010
"Run"
The Bone Marrow Transplant coordinator called to tell us Tali is on track to begin her next round tomorrow (Friday).
Talitha's platelets are just enough at 79 for the go-ahead. (Her ANC has dropped but is still enough at 900.)
The week at home went way too fast but we're grateful she's responding well enough to stay on the optimal treatment schedule.
Not sure where she picked it up but lately, when Talitha gets excited and wants you to hurry, she'll add the encouraging word "run" to her request. Sometimes she'll say it multiple times. Example: Book. Run. RUN.
Oh, how she can make her siblings laugh sometimes.
It's a real plus when Tali forgets she's sick. (I think forgetting like that is more easily done at home.)
Well, ready or not, let's do this thing. Transplant round #2: here we come!
Talitha's platelets are just enough at 79 for the go-ahead. (Her ANC has dropped but is still enough at 900.)
The week at home went way too fast but we're grateful she's responding well enough to stay on the optimal treatment schedule.
Not sure where she picked it up but lately, when Talitha gets excited and wants you to hurry, she'll add the encouraging word "run" to her request. Sometimes she'll say it multiple times. Example: Book. Run. RUN.
Oh, how she can make her siblings laugh sometimes.
It's a real plus when Tali forgets she's sick. (I think forgetting like that is more easily done at home.)
Well, ready or not, let's do this thing. Transplant round #2: here we come!
Wednesday, April 28, 2010
A walk around the block
Kind of surprising to see a few snow flurries this late in April. I was thinking about turning the air conditioner on a week ago; instead, I'm turning up the heater.
Still, I wanted to get Talitha out of the house to give her some chance to be free to see the world a bit before going back into that hospital room for another stint.
My friend JoDeen knitted some warm hats for Tali so we found one of those so her head wouldn't freeze. Then I bundled her up with lots of blankets in the stroller.
I think the short walk did us both some good.
(It was sure nice to say "hi" to a few friends in the neighborhood as we walked by.)
It may be a bit chilly but the blossoms on the trees and the flowers everywhere you look sure do brighten my spirits. Talitha tried her best to keep a stoic expression in tact throughout our little walk. Alas, she finally let one little smile escape.
She just couldn't help it.
She's feeling pretty good right now.
Still, I wanted to get Talitha out of the house to give her some chance to be free to see the world a bit before going back into that hospital room for another stint.
My friend JoDeen knitted some warm hats for Tali so we found one of those so her head wouldn't freeze. Then I bundled her up with lots of blankets in the stroller.
I think the short walk did us both some good.
(It was sure nice to say "hi" to a few friends in the neighborhood as we walked by.)
It may be a bit chilly but the blossoms on the trees and the flowers everywhere you look sure do brighten my spirits. Talitha tried her best to keep a stoic expression in tact throughout our little walk. Alas, she finally let one little smile escape.
She just couldn't help it.
She's feeling pretty good right now.
Tuesday, April 27, 2010
Trials of Greatness
Talitha spent all morning and part of the afternoon at the PCMC and University Hospital with her mom for more tests—kidneys and ears.
They tried a non-sedated hearing test and Tali did ok with it except for a few bewildered outbursts. The ears seem to be holding up still; no word yet on the kidney tests.
Tali's platelets (and all her blood counts) are climbing on their own which is a really good sign. There's still some question as to whether or not the platelets will reach the magic number of 75 before Friday. (Not always sure what to root for. If they don't hit 75 by Friday, we get to keep Talitha home for the weekend. On the other hand, staying on schedule will better keep any cancer stragglers on the run...)
When asked how Talitha is doing, Audrey indicated things seem to be going well other than she wishes Talitha would eat more. (She’s still drinking really well.) The doctors re-assured Audrey not to worry. The fact that Talitha is still eating and drinking anything is somewhat of a marvel to them considering they expected her to be on a feeding tube by now(?!).
We are thanking the Lord for every tender mercy big and small.
I was inspired this morning by a page from my friend Roger Anthony's Now I Understand book. Each page contains a pearl of wisdom. I picked up the book and "coincidently" opened to page 51 entitled Trials of Greatness. I felt it would be worthwhile sharing at the close of tonight’s blog entry in the hopes that it may be uplifting to others as well:
"Greatness beyond our wildest imaginings is within us all and is championed by an unsung hero, who by most is treated with great disdain—his name is 'Trial'.
"NOW I UNDERSTAND, we can thank God for trials and the greatness they awaken from slumber deep within that otherwise would remain entombed and undiscovered to the detriment and shame of self and all mankind.
"IN THE DOING COMES... Greatness through Rejoicing in and through Trials."
They tried a non-sedated hearing test and Tali did ok with it except for a few bewildered outbursts. The ears seem to be holding up still; no word yet on the kidney tests.
Tali's platelets (and all her blood counts) are climbing on their own which is a really good sign. There's still some question as to whether or not the platelets will reach the magic number of 75 before Friday. (Not always sure what to root for. If they don't hit 75 by Friday, we get to keep Talitha home for the weekend. On the other hand, staying on schedule will better keep any cancer stragglers on the run...)
When asked how Talitha is doing, Audrey indicated things seem to be going well other than she wishes Talitha would eat more. (She’s still drinking really well.) The doctors re-assured Audrey not to worry. The fact that Talitha is still eating and drinking anything is somewhat of a marvel to them considering they expected her to be on a feeding tube by now(?!).
We are thanking the Lord for every tender mercy big and small.
I was inspired this morning by a page from my friend Roger Anthony's Now I Understand book. Each page contains a pearl of wisdom. I picked up the book and "coincidently" opened to page 51 entitled Trials of Greatness. I felt it would be worthwhile sharing at the close of tonight’s blog entry in the hopes that it may be uplifting to others as well:
"Greatness beyond our wildest imaginings is within us all and is championed by an unsung hero, who by most is treated with great disdain—his name is 'Trial'.
"NOW I UNDERSTAND, we can thank God for trials and the greatness they awaken from slumber deep within that otherwise would remain entombed and undiscovered to the detriment and shame of self and all mankind.
"IN THE DOING COMES... Greatness through Rejoicing in and through Trials."
Monday, April 26, 2010
Love
I love this song the children sing at church:
"As I have loved you,
Love one another.
This new commandment:
Love one another.
By this shall men know
Ye are my disciples,
If ye have love
One to another."
The words to this song are based on the scripture found in John that recounts Christ's instructions to his apostles near the end of His mortal ministry.
"A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another. By this shall all men know that ye are my disciples, if ye have love one to another." (John 13:34-35)
Christ's love is a perfect pattern to follow.
We learn from reading the scriptures that Christ's love "is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things." (Moroni 7:45)
I'm grateful for Christ's love. I see it in the faces of my children (when they are being nice). I see it in the acts of kindness that we receive from loving neighbors and concerned friends on nearly a daily basis.
I feel it when I pray.
Love is so simple yet so powerful.
Thank you for loving Talitha. Whether it's a wave across the back yard fence or a word of encouragement from the other side of the world, your love lifts, builds, and inspires us.
We love you!
"As I have loved you,
Love one another.
This new commandment:
Love one another.
By this shall men know
Ye are my disciples,
If ye have love
One to another."
The words to this song are based on the scripture found in John that recounts Christ's instructions to his apostles near the end of His mortal ministry.
"A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another. By this shall all men know that ye are my disciples, if ye have love one to another." (John 13:34-35)
Christ's love is a perfect pattern to follow.
We learn from reading the scriptures that Christ's love "is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things." (Moroni 7:45)
I feel it when I pray.
Love is so simple yet so powerful.
Thank you for loving Talitha. Whether it's a wave across the back yard fence or a word of encouragement from the other side of the world, your love lifts, builds, and inspires us.
We love you!
Sunday, April 25, 2010
Except for...
The weather has been so nice lately--winter really does give way to spring. Everywhere I look I see blossoms on trees and flowers in bloom. Beautiful and refreshing.
Talitha enjoyed some fresh air today. She has such fair skin and not much hair left so we have to not overdo the direct sunlight.
She's still taking a 3-hour nap each day but otherwise seems to have pretty good energy. Of course, when she's around her brother and sisters, she just plays and forgets all about being tired.
Except for the mesh tube-top that helps keep the central line safe and except for the medicine she takes each day and except for the daily central line maintenance flushing and except for the special creams we use when changing her diaper and except for the sparse hair and except for the special antimicrobial diet and except for keeping a log of everything she eats and drinks and except for having to teach her to walk again...everything seems pretty normal around the home for the moment.
Talitha enjoyed some fresh air today. She has such fair skin and not much hair left so we have to not overdo the direct sunlight.
She's still taking a 3-hour nap each day but otherwise seems to have pretty good energy. Of course, when she's around her brother and sisters, she just plays and forgets all about being tired.
Except for the mesh tube-top that helps keep the central line safe and except for the medicine she takes each day and except for the daily central line maintenance flushing and except for the special creams we use when changing her diaper and except for the sparse hair and except for the special antimicrobial diet and except for keeping a log of everything she eats and drinks and except for having to teach her to walk again...everything seems pretty normal around the home for the moment.
Saturday, April 24, 2010
"oh yeah"
So good to be home!
Talitha is enjoying her own bed and loves not being interupted at all hours of the night with beeping IV pumps and nurses drawing blood samples. (Although it is pretty amazing what she has learned to sleep through at the hospital.)
Tali likes to see people laugh and smile. If we get too serious, she will get a concerned look and ask, "sad?"
She sure was getting us to giggle today by saying, "oh yeah" over and over again. I just love little children and their cute little voices.
If all goes well, Talitha will be at home until next Friday, April 30. That's when she's scheduled to begin her second transplant round.
In order to start the next round, her ANC needs to be above 750 and her platelets need to be above 75 without transfusion help.
Thank you for praying for Talitha.
Talitha is enjoying her own bed and loves not being interupted at all hours of the night with beeping IV pumps and nurses drawing blood samples. (Although it is pretty amazing what she has learned to sleep through at the hospital.)
Tali likes to see people laugh and smile. If we get too serious, she will get a concerned look and ask, "sad?"
She sure was getting us to giggle today by saying, "oh yeah" over and over again. I just love little children and their cute little voices.
If all goes well, Talitha will be at home until next Friday, April 30. That's when she's scheduled to begin her second transplant round.
In order to start the next round, her ANC needs to be above 750 and her platelets need to be above 75 without transfusion help.
Thank you for praying for Talitha.
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