Reckless trust

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!

"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!

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.

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."

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!

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.

"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.

Hats off to a great first BMT!

Talitha not only got to leave her hospital room...

...she got to come home!

She was in a state of disbelief when I pulled the wagon into the room and told her it was time to go home. She was really quiet as if to not do something rash to end the good dream if that's all it would be.

Then she said, "wagon?"

Her eyes were big as we put on her pink jacket and pink hat and loaded into the wagon.


We had to put her mask on to leave the room...


Quite the celebration at home! Talitha dressed up for the occassion complete with tutu, wand, and a delightful assortment of hats. (These are just a few of the many hats received.)

Thankfully, Talitha's little personality survived this first-of-three transplants! She's already loving being home with her sibs--even if it will be for only a week--and it shows.

Thank you everyone for your prayers, support, encouragement, tending, meals, contributions, emails, notes, thoughts, house cleaning, rides, gifts, understanding, love, and kindness. Hats off to each of you!

Engrafting underway

Grateful to report that Talitha's first-of-three bone marrow transplants is working.

Her ANC began showing signs of life with a morning measurement of 300. This means her bone marrow is beginning to come back on line to re-establish the body's factories for blood cell & platelet manufacture as well as the body's shields against infection.

The doctors previously said they want to see two days of an ANC of at least 500 before releasing Talitha from her hospital room confinement. However, the word today was that if her numbers climb substantially in tomorrow morning's blood draw then they will release her. (Yay!)

Thank you for praying for Talitha!

Life is not fair

Some nights it’s easy to write. Other nights it takes lots of effort. I’ll let you guess which it is tonight.

Sooner or later I felt I had to tackle the “fairness” issue. I just didn’t know when.

It was a hard day today and maybe that’s why as I bowed my head at the computer to seek some kind of inspiration, it came.

Tonight’s the night.

The whole “Life is not fair” thing started for me a couple years ago if I remember correctly. It was my turn to teach the lesson for family night and I pretty much came out of the gate with a planned rant about most everything I could think about that just wasn’t fair.

My children just kind of stared at me like that kid on the tricycle in the Disney movie “The Incredibles” when the dad (a.k.a. Mr. Incredible) picked up his car in the driveway of his home. (Ok, maybe their mouths weren’t gaping open with popped bubblegum covering their faces…but they were at least a little taken back.)

My kids are notorious sticklers for everything being fair. And if it’s not, I get to hear about it.

Well, I bluntly set the record straight:

Life is not fair.

It wasn’t hard to populate a whole list of examples pertinent to each family member:

1. Elisa loves drama and gives it her all; it’s not fair that she didn’t get the lead in the musical
2. Malorie loves soccer and worked so hard all those years; it’s not fair that she can’t play at the college level because of 10 concussions by age 16.
3. Trevor loves basketball and is so good at it; it’s not fair that he was born to short parents

…and the list went on and on including some silly things obviously exaggerated for effect. There were sobering things on the list too. (And if we were having that lesson today, Talitha’s cancer would be on the list.)

But after all that long list, I explained that there was something even more unfair than everything we’d listed. In fact, something happened nearly two thousand years ago that was vastly more unfair than anything that has happened before or since.

Someone who never did anything wrong…who never broke the law…who never even had a bad thought was punished and suffered for everyone else’s sins, errors, misdeeds, crimes, sicknesses, and pain.

The prophet Isaiah said of Christ:

“He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not.

“Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted.

“But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

“All we like sheep have gone astray; we have turned every one to his own way; and the Lord hath laid on him the iniquity of us all.

“He was oppressed, and he was afflicted, yet he opened not his mouth: he is brought as a lamb to the slaughter, and as a sheep before her shearers is dumb, so he openeth not his mouth.” (Isaiah 53:3-7)

Christ endured unfairness that can’t even be described. The suffering in Gethsemane where He bled from every pore; the mocking and emotional abuse of the illegal trials and sentencing; the spitting; the whipping nearly to death; the long walk to Calvary; the cruel cross…how did God put up with it? Every molecule of the Universe must have been appalled and ashamed.

But it is precisely this unfathomable unfairness that paid the demands of Justice and allowed Mercy onto the battle field of life where Christ rescues us and heals us…

…and indeed makes our situation MORE THAN FAIR.

“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” (John 3:16)

How grateful I am for the GOOD NEWS that life is NOT fair. For if it was, I would be condemned. If life was fair, the demands of justice would exact their awful toll--a price beyond my means to pay.

So I especially try to remember on the rainy days of life--when discouragement and disappointment don’t keep a healthy distance--that life is not fair.

And how grateful I am that it’s not.

Another bag of platelets

Talitha received more platelets today. The bone marrow transplant doctors like to infuse platelets when the count drops below 50--especially with patients who have undergone brain surgury like Tali. (That's compared to the oncology doctors that don't infuse until the counts get below 20.)

Another 3-hour nap today.

Talitha seems to be handling this first transplant well. We are hopeful that the engraftment--the word for when her bone marrow is back and functioning--will happen in the next few days.

Usually, antibiotics have tended to plug Tali's bowels abit. With bone marrow transplant, we're told that the bowels usually stay really loose. This has certainly been the case with Tali. Not good news for her sensitive skin. (Fortunately, she does not have diarrhea.)

Thank you for your kind support, emails, letters, prayers, and love. Means the world to us. I try to post some of what we receive because we are so inspired by your expressions of faith, hope, gratitude, and love. If you haven't clicked on the "Messages of Faith, Hope, and Gratitude" link in a while, I think you will find a growing treasure of wonderful encouragement that has been a real blessing to us from so many of you.

Thank you.

Some books you just shouldn't read

"And the Lord...gave them strength, that they should suffer no manner of afflictions, save it were swallowed up in the joy of Christ." (Alma 31:38)

I'm grateful for joy.

It's one thing to look forward to having joy at the destination. But since we spend most of life in journey mode, I'm grateful that joy can also be now.

We have Christ to thank for that.

Christ makes it possible to find good and experience good in all things. That's why we can trust Him completely.

I passed a sign-board of a church this afternoon. It said: "Running low on Faith?"

Then it added: "Come in for a fill up."

Not a bad suggestion.

Maybe it's easier to notice when the car is out of gas because it just stops running. But when we're out of gas spiritually, that's a much more precarious position.

Fortunately, we don't have to wait to go to church on Sunday to get our batteries charged. But we do have to stop and add a little to the tank each day so we don't get stuck on life's highways relying on the insufficient arm of flesh.

I'm striving to be grateful for each day whether you'd call it a good day or a bad day. I believe that even the days that don't go the way I would've hoped can be great blessings if I trust the Lord and let Him be the teacher and not jump to unfounded conclusions.

Talitha, by all accounts from the doctors and nurses, is doing tremendously well seven days into her bone marrow transplant. If it wasn't going so well, I hope that I would be no less trusting.

Talitha took one 3-hour nap from 11am to 2pm. She's definitely showing signs of fatigue but since she can't read, she doesn't realize that it's not normal to still be eating and drinking on day seven. We're reading a LOT of books to her but for some reason, the book about what's normal isn't one of them.

Winds of Adversity

Hospitals make you fat.

Well, at least they do if you're not the sick one. When you're the one taking care of someone else, there's a lot of sitting, reading, singing, writing, playing, coloring, watching, rocking, and sneaking in of a nap now and again that goes on. (Not to mention eating hospital food.) There is definitely some extra padding that starts sticking around.

So, that is why with the weather getting so amazing I decided to go for a walk outside when Talitha was taking a nap. On one occasion last week I started heading east. That was a mistake, it was pretty much all uphill with hardly any sidewalks. I was huffing and puffing.

Another day I tried going north/west. This was better, although the terrain up there is either up or down, not a lot of flat surface to catch your breath. But, there was lots of sidewalk so I stuck with it. I was feeling really good about the distance, and how things were going inspite of the ups and downs. That's when the wind started. I started heading back, out of shape and out of breath, when the wind started really blowing against me. I was mad. All I wanted to do was take a walk. The wind made it extra hard to keep moving forward. I put up with all the ups and downs, why this??

Isn't that the way it goes? I hate to admit that I was mumbling and grumbling most of the way back. And when I finally got to the big PCMC sign something amazing happened.

I looked up at Tali's window, the clouds opened up and there was sunshine on my face. The tears came down and I could feel His warm embrace. If we could all just hang on until that sunshine comes in...

Talitha has had her ups and downs this past week too. Today she had a very down morning, and was very grumpy (can you blame her? :o). Her counts being at zero, she just didn't feel like doing much of anything, including eating. She did, however, continue to drink her milk (yay!).

Tali had a 2 1/2 hour morning nap and then had another 2 1/2 hour nap this afternoon. After that her day went up! She ate lots for dinner and amazed her dad by eating almost everything he ordered for her, including some watermelon and tomatoes! YAY!

The doctors are amazed at how well she is doing. This is day #6 from the transplant and she is eating, drinking, and pooping normally. Life is good. Even with a little wind in it. I think I may change the title of my entry to "wings of adversity" instead. Because despite the adversity He carries us on His wings. And we are so blessed to be carried on the wings of your prayers. Thank you. May the Lord bless you and warm you with His radiating sunlight.

Rooms in the room

The white blood cell count is down to 100 and the ANC is now zero. We expected her ANC to drop to zero earlier in the week so we feel fortunate that she had several additional days with a working immune system since the transplant on Monday.

The doctors are saying she's looking really good for being almost a week into BMT.

Talitha has resigned herself to the fact that leaving the room is not negotiable. Interestingly, she has created a sort of home within the hospital room that has four separate, distinct places or virtual rooms.

The first is the floor mat where she has the most mobility. Today she pulled together three electronic toys that play music or repeated sounds and she played them all at once over and over. (Definitely a new sound.) This is also where she likes to have two pillows side by side and have us lay with our heads next to each other on the pillows and then read books that I hold up in the air above us.

The second place is the crib. More and more, she will say the word "crib" as her way of asking to be put up in her bed where she likes to have lots of blankets, books, her milk, and sometimes toys or pictures to look at. Sometimes she'll call for interaction but mostly this is her time with a bit more solitude.

The third virtual room is the recliner that is used as a bed for the family member staying over night with Talitha. She uses the word "pillow" to signal her desire to sit up on the recliner where there happens to be lots of pillows, hospital sheets and blankets. This is mostly a reading room used for either personal or group reading. (She came across a book that had some tears in the pages so she kept saying "tape" until I tracked down some clear tape and made the necessary repairs.)

The final area in her floor plan is the rocker. This area of the "home" is really the multi-purpose room where you might find her watching a movie on TV, being held in the morning to get her day going, or taking a cat nap in our arms. She usually makes her way to this space with the code words "hold you".

In watching her, I'm learning that a good attitude and a bit of creativity go a long way toward making life a little brighter no matter the struggle.

(My favorite room in the room is the floor mat. Especially when she has me lay down on a pillow and then plays with toys so I can catch a 30-second nap.)

:-)

How to forget you don't feel good

When I arrived this evening at the hospital to begin my weekend shift, Audrey reported to me that Talitha just wasn't eating much now.

Afton and Madeline came with me to see Talitha before going home with their mom and while we visited for a few minutes, the three sisters began playing. They played with crayons, they played with blankets, they played with the door-window stickers...and in the process Talitha started taking bites of food from her sisters. Before they were done, Tali had eaten a whopping 22 bites of her food and had been laughing like we haven't heard her laugh in a good while.

Praise the Lord for sisters!

For a few glorious minutes, Talitha wasn't sick and tired.

(When I put her to bed tonight, Tali was "lights-out" almost before I'd stepped out and shut the door to her room. I hope she dreams about her family--that just simply adores her--and Jesus.)

Higher ground

Having spent many of her waking hours on the floor mat in her room during the last 6 days, Talitha decided that today she would change things up a bit. She played in her hospital crib for large chunks of the time and also sat for long stretches on the recliner that pulls out into a bed.

The eating is still happening in spurts while her drinking is more consistent. She threw up again this morning after downing a whole cup of milk so the nurse suggested the obvious that we may want to consider giving her less to drink first thing until she is past the morning nausea that most all bone marrow transplant patients experience.

The stricter, non-microbial diet can be annoying as it limits the selection of foods available--especially when it’s items we know she’ll eat. Just have to take it as it comes some days and avoid getting bent out of shape which is always an easier but totally unproductive choice.

Speaking of unproductive choices, I recently noticed there was too much sarcasm and put-downs happening in our home which almost always leads to tears and/or hurt feelings.

We try to have a family night once a week where, among other things, we take turns teaching a short lesson about something we’ve learned that can help us be better and do better in life. So during one of these family nights, I used my turn to teach as an opportunity to address my concerns about how we sometimes weren't treating each other very nicely.

I rounded up a big box of wooden blocks from the play room and had everyone sit down on the floor in a circle. Then I had each family member take a turn building something with blocks. But before they could ever get very far, I bluntly knocked what they were building down with exaggerated rudeness.

This shocked everyone the first couple times, then they began to expect it and even guard against it. But, as it is so easy to knock down wooden blocks, I had no trouble finding a way to do it myself or enlist the help of one of the other onlookers.

With that visual in mind, I shared my concerns that rudeness, put-downs, or anything derogatory that we say or do to each other are all really easy to do and take no imagination or creativity. Tearing down, whether it’s wooden blocks or another individual, is so easy. Anyone can do it. That’s why the villains in most any movie seem to be able to wreak such havoc to make life miserable for others or to slow down the hero.

It takes effort, creativity, and a pack of godly virtues to lift others and be builders.

Now, we don’t have to go around being a superhero, but with a little effort, patience, and love, we can do a lot better than your run-of-the mill villain. And the better results we'll get from those efforts will, over time, bring us peace, happiness, and joy—true success!

Christ is our great example of all that is good and right. He is all about lifting and raising us up. We feel good when Christ is in our life because He inspires courage, confidence, and hope. He showed us a better way than what the world offers. Christ’s way is about life and light, creativity and intelligence. We really can rise above the negative and all its miserable-ness.

But it starts with taking the higher ground which usually involves some climbing.

I’m really, really grateful for Christ who always took the higher ground. These words from one of the hymns we sing in my church are all about the power of Christ to lift, rescue, and save us as He leads us to His higher ground:

The Lord is my Shepherd; no want shall I know.
I feed in green pastures; safe-folded I rest.
He leadeth my soul where the still waters flow,
Restores me when wand’ring, redeems when oppressed.

Thru the valley and shadow of death though I stray,
Since thou art my Guardian, no evil I fear.
Thy rod shall defend me, thy staff be my stay.
No harm can befall with my Comforter near.

In the midst of affliction my table is spread.
With blessings unmeasured my cup runneth o’er.
With perfume and oil thou anointest my head.
Oh, what shall I ask of thy providence more?

First rodeo

Around each bend is something new.

A few weeks ago, I thought I was starting to get the hang of how the cell counts in the blood work in relation to the cycles of chemotherapy and recovery between injections. The counts drop for a while after chemotherapy and then start climbing again during recovery.

Lately it seems the counts are running counter-intuitively. We started this first bone marrow transplant round after a pretty good recovery period that showed Tali was no longer neutropenic (i.e. ANC below 1,500). But her counts started dropping before the Friday and Saturday's injections were complete. Then the counts started rising after the injections before dropping on Monday.

Today there was a huge spike from yesterday's 400 ANC to 9,000 today. The explanation for many of these "anomalies" I'm told is the neupogen Talitha receives to stimulate her white blood cells.

My brain can no longer compute the trends...like the rider on the bull being whip-sawed left, right, up, down...shaken silly.

Sometimes, I feel I'm over thinking certain things while oblivious to weightier matters. Guess that's a bit like straining at the gnat while swallowing the camel.

Trying to do what's right and keep God's commandments can be like that, I think. You can be so afraid of doing something wrong and over think the do's and the don'ts to the point that you forget to DO what's right.

Maybe that's why Christ boiled it down to two simple rules: (1) Love God with all your heart, and (2) Love your neighbor as yourself. If we do those things, the rest kind of falls into place.

Perhaps this "first rodeo"--as people at the hospital call it--is shaking me up enough to learn to put first things first. Then whatever's left is either going to fit or be let go of.

Mesh tubes and other armor

In this picture taken last Friday, you can see an example of the make-shift tops we fashion from hospital-provided, tube-netting cut to size to help hold Talitha's central line in place for more support and to lessen the chance it will snag on something and break or be weakened. Her first central line had too many mishaps and we're exploring alternatives for keeping her safer while she has a line in her chest.

If you look carefully, you can see a small bandage under the mesh on her left side where her old central line hole is healing and a larger bandage on her right side where her new line is now located. Once Talitha had received her first injection of Thiotepa on Friday, the bandages on her chest had to be removed to prevent burning of her skin as the Thiotepa excretes through the skin. (This was also why she had to have three baths a day while receiving the Thiotepa and for 48 hours after the last dose which was administered on Saturday.)

The bandage covering the central line performs two important functions: (1) part of the line is coiled under the bandage which provides support against pulling directly on the point-of-entry into the chest in the case the line is snagged or stepped on when connected to an IV, and (2) it prevents infection from entering through the surgically opened hole in the chest where the line was inserted.

We were grateful when the 48 hour waiting period was up and we could get a bandage back on that central line spot. From Friday afternoon to Monday evening, all Talitha had to support the line was the mesh tops (like you see in the picture) that we made for her each time she had a bath. The exposed entry-point for the line had to be sanitized/disinfected each time she had a bath as a precaution.

Careful as we tried to be, twice during this no-bandage time, her line was accidently snagged or pulled while connected to the IVs. Both times, poor Tali just cried from the pain. Fortunately, the line stayed put and there was no bleeding or damage to her skin or the line.

I think of the ways the Lord tries to support each of us day by day. He doesn't mention mesh tubing or bandages but He does want us to avail ourselves of His ample provision and support.

"Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand. Stand therefore, having your loins girt about with truth, and having on the breastplate of righteousness; and your feet shod with the preparation of the gospel of peace; above all, taking the shield of faith, wherewith ye shall be able to quench all the fiery darts of the wicked. And take the helmet of salvation, and the sword of the Spirit, which is the word of God." (Ephesians 6:13-17)

Talitha had another good day. She's still drinking great so she doesn't have to have supplemental IV fluids at the moment. She's also started eating better now that her mom is with her. (Go figure.)

Happy BMT Birthday!

They weren't kidding when they told us the nurses, doctors, and staff make a big deal out of your bone marrow transplant day(s).

Everyone crowded into Talitha's hospital room and sang "Happy BMT Birthday to you" and then gave her gifts and a big sign to hang in her room. (They were less rowdy than when doing the celebration for older children so they wouldn't frighten Talitha who's still skeptical about this whole living-at-the-hospital thing.)

As soon as everyone cleared out of the room, they started the infusion of freshly thawed stem cells.

It's actually pretty neat how they make a big deal of the transplant because it's a miracle how the transplanted, self-donated stem cells bring new life and new hope to patients like Talitha who would not survive without them.

Talitha handled the transplant quite well once she got past the severe nausea. She emptied her stomach down to the dry heaves a couple times before we were able to get her stabilized. The nausea culprit is a chemical called DMSO that's added to the harvested stem cells before freezing to keep the cells from forming jagged crystals that would puncture/destroy the stem cells.

Unfortunately, you can't separate that chemical out before transplant so the body has to process and excrete it through the breath and skin. (That's why her room now has a strong odor that smells like rotten cream corn.)

Our family (except Elisa who is at SUU) continued the celebration of her BMT birthday tonight with a short visit. Talitha was delighted to be able to play with her siblings for a few minutes.

It was also nice to be able to pray together as a family. We have so much to be grateful for.

Tonight we are grateful for new life however it is celebrated.

Choosing peace

Talitha's rest day was pretty much that except for the mandatory three baths to keep the Thiotepa off her skin as it excretes through her sweat glands.

She does not like the baths and with rare exception screams from start to finish. We haven't figured out why. Another parent I spoke with accross the hall said her boy had the same reaction.

Just two more baths to go tomorrow and her system should be Thiotepa free.

Tali's chemo fatigue came on strong late this afternoon. She had a super long nap and then fell asleep in my arms for another hour after I got her up from her nap. Then she practically fell asleep sitting up on the floor mat this evening. So I asked the nurse to prep the tub earlier than planned and we got her through the final bathing ordeal of the day.

She's still drinking pretty good but the eating is starting to really drop off. They say this is to be expected but it's not so fun watching it happen.

Tomorrow's a big day with her first bone marrow transplant. They are expecting it to go well as it's an Autologous transplant--meaning she's her own donor of stem cells. (Often when the stem cells are from another donor, your body fights the transplant and causes a number of not-so-fun challenges requiring substantial "neutralizing" medicines and other yucky stuff.)

I'm learning that "peace" is a choice as much as my attitude. The Lord has been constant in His support through these months of trial. When I choose His voice as the dominant influence in my life, the peace I feel is as real and constant as He is. When I choose to let other voices have significant air-time, the peace I feel ebs and flows with the occurances of the moment and my uncertain interpretations of them.

I hope to make a concerted effort this week to choose constant peace regardless of what happens around me in or out of the hospital.

Poke!

Both days of chemo injections for this cycle are behind us now. (Yay!)

Tomorrow is a rest day for Talitha. (How appropriate.)

Lots of interuptions during the night so Tali didn't sleep long enough. She had a good long nap today but was still tired when she woke up; surprisingly she fell asleep on the floor mat just minutes after her two hour nap...

Tali is still feeling pretty good but is getting restless not being able to leave the room. (Makes me wonder how we're going to do this for such a long stretch. Guess we'll try not to heap tomorrow's concerns on top of what we have on our plate today.)

Not so easy keeping on a routine when you're not at home. Talitha is pretty good at folding her arms when we pray at meal time and before going to bed. She's even getting in a good "amen" now and again.

She has her own little sense of humor. Today she even got in a little tease about those shots we give her when we're trying to stimulate her blood counts to come up. She was holding a syringe I'd just given her some oral medicine with. She took it and pushed the end into her leg and said, "poke!"

Then she looked up at me and grinned.

I'm grateful for the happy, laugh-out-loud moments. It's all part of the journey.

Great day!

Talitha settled in so nicely for her first Consolidation/Bone Marrow Transplant cycle.

Thank you for your kind thoughts and prayers. She really had a great day!

The Child Life specialist I met with last Monday suggested we put a large mat on the floor, lengthen the IV tubing and let Talitha be down and about exploring.

Brilliant!

Except for nap time, Tali was crawling and moving and thoroughly enjoying the day on the floor of her re-arranged hospital room. So much better than sitting on a lap or being held hour after hour or being confined to the crib.

I think we all made it through the day a little better.

The chemotherapy didn't begin until 1PM. (Just two baths today instead of three because of the late start.)

Talitha was SO pleasant. She interacted with the nurses. She waived. She smiled. She KNOWS she's cute. (She's going to need all her cuteness and courage to get through these next few weeks.)

Lot's of smiles and happy hearts tonight.

"Into the Fire"

I've been giving myself pep talks as this week has just gone by way too fast. I know the morning will be here in a moment and we'll be back up at the PCMC in Salt Lake for this next important leg of the journey.

Kind of unexpected that a song from The Scarlet Pimpernel would start playing in my mind tonight. The song "Into the Fire" does invoke a fighting spirit. Thankfully, I'm not fighting a senseless french mob with their guillotines. Our battle is a quieter one. Courage, however, is still required.

So, here are a few words from somewhere in about the middle of that memorable song, "Into the Fire":

"You can tremble, you can fear it
But keep your fighting spirit alive boys
Let the shiver of it sting you
Fling into battle, spring to your feet boys
Never hold back your step for a moment
Never doubt that your courage will grow
Hold your head even higher and into the fire we go"

The best pep talks of all come from the special re-assurances that usually happen in the quiet moments of prayer, scripture study, and reflection. And when the quiet moments are through, then it's time to get to work and stay engaged in positive activities so you don't have time for useless worry or for talking yourself out of being peaceful.

Faith in Christ really is a potent power that makes it hard for fear to stick around. We're trying to focus on things that invite faith. I'm finding it's easier to focus on building faith than obsessing about scary things over which I have no control.

Talitha had another great day. School is still out for Spring Break so Tali enjoyed a full day of non-stop play and activities. So refreshing to see.

Her legs are also gaining strength toward learning to stand again. We don't know how the bone marrow transplant cycles will impact her learning to walk again but we're hopefully we can keep making progress on the days Talitha feels well enough to try.

So far the fire has been hot and refining but not all consuming. We're grateful for that.

Toxic tolerances

Another round of "classes" today to prepare us for the three Consolidation cycles, each of which will include Bone Marrow Transplant (BMT).

Talitha will be admitted to the ICS floor at the PCMC this Friday at 9am.

On Friday and Saturday, she'll receive two chemotherapy drugs--Carboplatin and Thiotepa--in high enough doses to eliminate all of her bone marrow. Then she'll have a rest day on Sunday.

Unlike the other chemo drugs, Thiotepa clears the body through the skin so Talitha will be bathed three times a day until Monday (to avoid skin burns from the exiting chemo) at which point she will receive an infusion of her stem cells meant to rescue her by re-populating the bones throughout her body with new bone marrow.

Talitha will be restricted to her hospital room from the time she is admitted on Friday until she is engrafted (i.e. ANC = 500). Engrafting takes a minimum of two weeks but we have been warned to expect three--unless there are even further delays from serious complications.

Tali's heart, liver, and kidneys are still functioning at normal levels. Her hearing is still good although the most recent test results indicate some conductive hearing loss in the lower sound registry due to fluid in the ear. Her hearing remains the highest risk especially from Carboplatin. We feel strongly that Talitha's organs and hearing have been preserved thus far because of the faith and prayers of so many.

Thank you.

Please pray for Talitha's ears that they might continue to hold up even under the heavy chemo doses hitting her this Friday and Saturday.

The information we've received this week really is overwhelming to digest. A certain anxiousness has been building this whole week and there have been plenty of fresh tears. The Lord keeps reassuring us and has helped quiet our fears and trust in Him to see us through this next phase just as He did with the Induction cycles.

So tonight we are feeling more peaceful.

The cancer has been responding well to treatment so far. The tumor is not visable on the most recent brain scan although the hydrocephalus is still just as visable as it was at the end of December.

The number of cancer cells present in the spinal fluid is quite a bit less than in January. We would've preferred that the tumor no longer be putting off seeds into the spinal fluid but we are hopeful that this next phase of treatment will finish the job.

The doctor told us that it would be easy to kill all the cancer in Talitha if they weren't worried about killing everything else in her body. Different parts of the body have different toxic tolerances that create the parameters of how toxic the chemo can be.

One of the first major toxic tolerance barriers you run into when fighting cancer is the bone marrow. But since they now have a bank of Talitha's own stem cells to rescue her with by replacing the bone marrow, they can now go beyond that barrier and fight the cancer more aggressively until they reach the next toxic tolerance barriers--the nearly irreplaceable kidneys, liver, and heart.

We're grateful for a couple more nights of preparation and rest.

Stay committed no matter what

I remember being in Europe at age 19 serving as a missionary for my church. During those two years, I faced a number of difficult assignments. Sometimes the tough stuff happened back to back to back...so much so that I wondered if maybe I was getting more than my fair share. Inevitably, I would look back on those challenging spots and think, "I'm glad I had that learning experience but I sure hope I never have to do that again."

I've heard some people think that you get to repeat certain trials until you learn the lesson God intends. Not sure I've ever read anything in the scriptures to support that theory. But I do believe this experience on Earth we call "life" is intended to be a proving ground for better things to come. As such, any combination of trials whether new or repetitive in nature might serve to build or refine.

We find ourselves at an interesting juncture with Talitha. The Consolidation cycles that are about to begin seem both new and repetitive. "New" because there will be different chemo drugs, procedures, and unknown reactions. "Repetitive" because we know what a week of around-the-clock care for Talitha in the hospital setting looks like and feels like. "New" because we don't know what back to back to back weeks look like and feel like. "Repetitive" because we've seen Talitha get really tired and really sick during every cycle.

"And let us not be weary in well doing: for in due season we shall reap, if we faint not." (Galations 6:9)

I'm grateful for learning and growth. Rather than wishing we didn't have a new sequence of cycles beginning on Friday, I want to re-commit myself to being faithful no matter what I'm called to do.

Have we felt the Lord's hand these past months? Yes.
Did He provide a way for us to make it through? Yes.
Is it true that He will not abandon us now? Yes.
Can we trust Him? Yes.
Can we do all things through Christ? Yes.

Talitha is getting a little stronger each day. She was acting her age today which wasn't nearly as annoying as it would have been under different circumstances.

We love her so much it hurts. (And she knows it!)

Cancer is so limited

Cancer is so limited.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy God's peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot conquer the spirit.
It cannot steal God's gift of Eternal Life.
Cancer is so limited.

~Author unknown

Talitha had her fourth kidney test today. We are grateful her organs are holding up well so far.

This is a transition week from the Oncology team to the Bone Marrow Transplant (BMT) team. Oncology is obviously still involved but BMT will be the front-line team for the Consolidation cycles.

Today's transition appointments included meeting with various support staff from Child Life, Social Services, Diet, and Finance.

Much of the new orientation information centers on additional precautions and restrictions we must follow at the hospital and at home due to the level at which Tali's immune system will be completely compromised.

I can tell they are still cautious with how much information they are giving us. They told us that this next phase is hard to prepare for because you just don't know what to expect. For example: every child responds differently; setbacks can be significant; exhaustion due to lengthier hospital stays becomes even more of an issue, etc...

It feels kind of like an impossible test. There's not really a multiple choice format and the answers can change from day to day depending on who the "resident" expert is that's answering student/parent questions at the time.

Fortunately, God grades the final exam and He gives extra credit for:
1. Love (especially when you felt like getting angry or lashing out but didn't)
2. Service (espeically when you forgot yourself and helped someone else that was also hurting)
3. Gratitude (especially when you felt like blaming and judging but didn't)
4. Faith (especially when you felt like being afraid but decided not to be)
5. Hope (especially when you felt like giving up but held on one more time instead)

We're grateful for these experiences that are teaching us to become more sensitive to things that matter more. It's gradually becoming less like shock-therapy and more like extended class work with extra labs and homework to help us really get our money's worth for life's tuition.

Blessings of Easter

Easter for me is all about hope. Christ rose from the tomb and because He did, death is but a moment that gives way to new life.

And Easter is even more than that. Christ helps us overcome all our challenges:

"In the world ye shall have tribulation: but be of good cheer; I have overcome the world." (John 16:33)

I love that Easter welcomes the springtime. It's a time of hope in every way. Dieter F. Uchtdorf said, “I have seen enough ups and downs throughout my life to know that winter will surely give way to the warmth and hope of a new spring."

Even the changing seasons are a representation of Christ and His power to lift from all affliction.

We've certainly felt His kind, lifting hand.

I heard a wonderful message at a conference our church just had. One of the church leaders, Dallin H. Oakes said something that really hit home: "Our family's faith is in Jesus Christ and is not dependent on outcomes."

We're still in the early stages of this journey with Talitha. We know that the Lord has preserved her life thus far but we don't know all that God has in store for the future. We hope that all will go well with this next phase of treatment. But at the end of the day, we don't know all that will happen. What we do know is that Christ has our best interests in mind. We want to put our faith and trust in Him and not in outcomes we can't control.

In other words, we're striving to be true followers of Christ; not fair-weather fans of Christ.

Happy Easter!

A beautiful time of year

Easter is such a beautiful time of year for so many reasons. The air is full of hope and life. Christ's resurrection broke the chains of death. We have every reason to rejoice and be filled with hope.

Talitha had a good day. She's a pretty happy girl and loves to play when she's feeling good.

The site of her previous central line on the left part of her chest is still bleeding a bit and draining so we're being extra careful with her and watching her closely.

She's not eating a whole lot but is somehow getting enough. She's drinking plenty of her rice milk though, so she's staying hydrated which is one of the primary concerns when she's at home.

Hoping everyone has a wonderful Easter and a joyous celebration of Christ and His triumph over death and hell.

Report on the surgery and other findings

Talitha's surgery to remove the old central line and install the new one was a success.

We didn't have an early surgery time which is really hard on little children because you can't eat for eight hours before the surgery and can only have clear liquids up until two hours before. If most of that 8 hours can be during the night while the child is sleeping, it's easier on everyone.

They generally try to work the smallest children in first but since her central line wasn't originally scheduled for replacement till next week, we had to take whatever opening they could find. Today's surgery was scheduled for 1:45pm but then was delayed for another hour and a half. So by the time it was Talitha's turn, she was quite beside herself not being able to eat or drink. (She would live on rice milk if we let her and since that isn't a clear liquid, she hadn't had any since she got up during the night and we gave her a drink.)

Before the surgery, a doctor from oncology came and told us the preliminary test on the spinal fluid shows there are still cancer cells circulating about checking out prime real estate locations on the spine to set up shop. We had hoped the methotrexate would've made the spinal lands and surrounding environments uninhabitable... Looks like there's still plenty of eviction work to be done.

I wish there were more adequate ways to express our appreciation for the countless acts of kindness and support toward our family. We thank you for helping to lift our burdens so that they are light and we are able to carry on.

Last November, I was asked to speak in church on the subject of gratitude. I thought I knew what gratitude was all about. What I learned is that I knew very little about the subject as the Lord provided some very sacred experiences that gave me new insights to the point that the talk was almost all new to me. I have felt since that the experience of giving that talk was by no small means a way to equip me for what was to come just one month later.

I've posted excerpts from that talk in the hopes that maybe others who are facing challenges might benefit more completely as I have from this most unique and powerful tool--gratitude.

Here is a link to "The Enabling Power of Gratitude":
http://talithablack.blogspot.com/p/enabling-power-of-gratitude.html

Surgery tomorrow...

We kept the old central line so the surgery sedation won’t require a new wrist IV. (We’re trying to cut down on pokes where possible.) We’ve just been keeping the central line tucked up tight against Talitha’s body with a sort of torso-tube netting so there’s less chance for dangling cords to snag.

Thank you for your keep-the-central-line-safe prayers.

Surgery is tomorrow at 1:45pm. They’ll remove the old line on the left side of her chest and “install” a new central line on the right side of her chest.

Tali’s blood counts FINALLY started climbing today which is always a relief infection-wise. We gave her one more neupogen shot tonight and that should push her up over the 2,000 ANC mark where she’ll no longer be neutropenic. She doesn’t care for those shots to put it mildly. I imagine it’s a bit like a daily bee sting, only you know it’s coming. She hollers about as well as you’d expect as the “poky” is being prepared. Then calms down quickly and gives her little “yay”.

Some nights I don’t know whether to smile or cry. (Or both.)

She’s a brave little warrior.