Wednesday, March 31, 2010

A time to comfort and a time to be comforted

"To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace." Ecclesiastes 3:1-8

Talitha gets very nervous when doctors or nurses come at her to do procedures or anything else that is not routine. Such was the case today with the echocardiogram and EKG. The procedure reminds me of an ultrasound only you're looking at the heart instead of the womb.

She gets nervous and whimpers but is quick to be calmed when reassured by Audrey or me. It's nice to be able to be right there with her most all of the time. The exceptions, of course, are when there's a surgery situation or a need for sedation like with the regular hearing tests. I was able to hold Talitha as they injected a general anesthesia into her central line. She was unconscious in less than a minute at which point they had me lay her on the surgical bed and leave the room.

Yesterday's and today's tests and scans have been encouraging. The MRI is showing that her brain and spine areas do not have new tumor growth; the heart tests appear to be normal; the hearing test is improved over the last one with still some issues related to fluid in the ear but no loss of hearing in the upper registery--the place most commonly impacted by chemo. The spinal fluid from today's lumbar puncture/spinal tap will be evaluated and we'll know in a week if the therapy has been successful at eliminating the free-floating cancer seed cells.

As much as Talitha likes to be reassured when facing the near constant probes, prods, and pricks, we've noticed that she in turn tries to reassure her parents or siblings when she senses any of us are having a trying moment. When one of us cries and she sees it, she will look in our eyes or give us a hug or in some way try to be a support to us. This doesn't happen all the time but when we've noticed it lately, it's pretty touching...and effective.

Reminds me that we're all in this together. Some days we're the ones providing comfort and support. Some days we're the ones receiving support and comfort. In both cases, God's hand is manifest and heaven is a little closer.

Tuesday, March 30, 2010

Are you tired of hearing about the central line yet?

"And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones; And shall find wisdom and great treasures of knowledge, even hidden treasures; And shall run and not be weary, and shall walk and not faint." (D&C 89:18-20)
I think when you find yourself in a really tough spot, you tend to appreciate certain blessings that maybe were taken for granted in the past.

Certainly, the Lord lifted and strengthened Audrey in what turned out to be an exhausting day.

The early morning drive for the MRI was expected. More driving to another hospital for an infusion of platelets followed by an infusion of red blood cells was expected. Having the central line break during the infusion was NOT expected. Three more repair jobs on the central line this afternoon were NOT expected.

When they were struggling for the third time today to get the repair job to hold, Audrey kissed Talitha's forehead and anxiously said, "Tali we need to pray! Tali, will you pray?" To which Talitha responded with an unexpected, enormous, "KAAAAAY!"

And it worked!

Tali's poor central line has been repaired 8 times now--the limit is 4. We hope they will be surgically removing the old line tomorrow while Talitha is sedated. It's just gotten too dangerous to keep that line in her chest. She's scheduled to get her new central line "installed" this Friday.

We go in for the echocardiogram, lumbar puncture/spinal tap, and sedated hearing test tomorrow.

Please, please, PLEASE pray her central line holds up long enough to get her through tomorrow's needs until they can safely remove the line and seal off the hole.


Monday, March 29, 2010

Run fast..and Do it!

Now that the three Induction cycles are complete, we face a week of tests, scans, consultations, transition, education, and preparation for a new world of Bone Marrow Transplant.

When I face times that seem impossible, I try to remember examples of brave men and women who kept going in spite of the storms and chose faith over fear. (Moses, Ruth, Daniel, Nephi, Mary, George Washington, Harriet Beecher Stowe...)

I most especially try to remember my Savior, Jesus Christ. He didn't quit. And by His empowering grace, neither will I.

Here's the schedule:

Tuesday, March 30:
7:30AM: MRI scan at IHC's Southridge Hospital in Riverton followed by blood and platelet transfusions at the PCMC in Salt Lake. (Tali's counts just aren't recovering very fast right now...)

Wednesday, March 31:
7:00AM: Electrocardiogram (EKG) at the PCMC
9:00AM: Assessment in the Oncology Clinic at PCMC to get ready for spinal tap/lumbar puncture
10:30AM: Spinal tap/lumbar puncture followed by sedated audiology test

Friday, April 2:
Surgury to remove (what's left of) the old central line and to install a new one at PCMC. (Time TBD)

Monday, April 5:
8:00am: Insert peripheral IV in wrist at PCMC oncology clinic
9:00am: GFR (Kidney test) at University Hospital (next door to PCMC)
Transition from Oncology team to Bone Marrow Transplant team (PCMC):
1:00pm: Meeting with child life specialist
1:45pm: Meeting with social worker
2:30pm: Meeting with dietary specialist
2:45pm: Meeting with planning coordinator
3:00pm: Meeting with finance person

Wednesday, April 7:
Transition from Oncology team to Bone Marrow Transplant team continues (PCMC):
10:30am: Pharmacy education
11:30am: Nursing education
1:00pm: History review and physical
2:00pm: Family conference with the doctor

Friday, April 9:
9:00am: Admit Talitha to Immuno Compromise Services floor at PCMC to begin extended stay for first cycle of Consolidation: Chemotherapy followed by Bone Marrow Transplant/rescue.

"And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength." (Mosiah 4:27)

I can almost hear Talitha's little but enthusiastic voice as she pieces together small two word phrases:

"Do it!"

Sunday, March 28, 2010

Faith = Trust

Talitha had a really good day. We’re so grateful for that. The hope is that she will get as much rest and time at home as possible before the consolidation rounds of chemotherapy begin on April 8.

I started reading an article called “The Atonement and Faith” by Dallin H. Oaks. I came across this passage that really resonated:

“Faith in the Lord is trust in the Lord. We cannot have true faith in the Lord without also having complete trust in the Lord’s will and in the Lord’s timing. As a result, no matter how strong our faith is, it cannot produce a result contrary to the will of Him in whom we have faith. Remember that when your prayers do not seem to be answered in the way or at the time you desire. The exercise of faith in the Lord Jesus Christ is always subject to the order of heaven, to the goodness and will and wisdom and timing of the Lord. When we have that kind of faith and trust in the Lord, we have true security and serenity in our lives.”

Finding peace amidst the storm is a real challenge. But it is possible.

I really enjoyed going to church today. I have the privilege of working with the children as they learn and sing inspiring songs about Jesus, and our faith in Him. Church services at the hospital are uplifting but not the same as being together with people who know you and are actively helping to lift burdens. I’m so grateful for the opportunity to be with the children at church.

It’s such a blessing to have the Church and Gospel of Jesus Christ in our lives.

Life has a purpose and there’s a road map for getting through even the roughest waters.

Saturday, March 27, 2010

"Just keep swimming..."

The line repair held!

A bit of a tense night but prayer and faith helped us get some sleep and trust that Talitha would be ok in her sleep.

Talitha's Grandma Wood and Aunt Cynthia came and spent the day with her so that Audrey and I could take our other children to Cedar City and see Elisa in a play at SUU. We are so grateful Talitha had a great day and that we were able to take a little breather and spend some much needed time with our other children.

One of Audrey's favorite movie phrases is from Disney's Finding Nemo. There's a crazy blue fish named Dori that suffers from short-term memory loss. From time to time she shares bits of wisdom with the frantic clown-fish father searching for his lost son, Nemo. At one point in their journey, they came to a challenging moment and instead of turning back or freaking out, Dori said, "Just keep swimming, just keep swimming..."

And so we will.

(And if all else fails, Audrey will start speaking "whale".)


Big week ahead with all the post-induction cycle testing and brain scans. We'll be fasting and praying for Talitha. Thank you for remembering her in your prayers.

Friday, March 26, 2010

Central line broke again

1. Last Monday at hospital for 3rd central line repair in less than 18 hours (low platelets were causing the bloody nose)
2. Enjoying blankets and books this morning
3. Talitha's brief trip outside tonight right before her central line broke...again
Another central line problem tonight. This time instead of just a hole in the line, the line snapped in two. Thank goodness for those emergency clamps we have on hand to quickly stop the bleeding.

Didn't have time for another trip to Salt Lake tonight. Just amazing how you find time when you have to.

Hoping the repair job holds through the night. Not sure I could keep my eyes open for another 45 mile hospital run at 4am.

Thank you for praying for Talitha.

Thursday, March 25, 2010

Making the World a Better Place



Talitha is home again! The fever left almost as quickly as it came. They did various tests of her blood and such but all of them came back negative for infection so far. After 24 hours without a fever, they released her to come home. (Yay!)

Talitha's second cousins in California, Luke and Nathan Baker (see above), decided to join the fight against cancer and honor Talitha in the process through the St Baldricks organization.

They not only raised money to help fight cancer, but also had their heads shaved at a St Baldricks event as a show of support for and solidarity with the many children who lose hair during treatment.

You can read about their experience and see more pictures through the link I set up on this page (upper right) called St Baldricks.

So many are working together in so many ways to make this world a better place. Whether you are fighting cancer or helping lift God's children in other ways, thank you. There is so much goodness in this world!

Wednesday, March 24, 2010

"What a great swerve!"

A close friend of mine, Roger Anthony, has a company with a most unusual name: "Crocodiles Not Waterlilies". A most extraordinary company story; and training that's both inspiring and useful. (Some of you may have heard Roger speak at BYU Education Week where he's a regular and a favorite with the youth.)

The principles Roger teaches in his courses are highly memorable because he uses animal characters and their stories to anchor the individual lessons.

One of these characters is a platypus named Swerve. The unique thing about the platypus with its odd looking duck-like beak is that it forages for food in the murky river bottoms where it is often hard to see. When it bumps into a rock, instead of getting upset, it gets excited. Why? Because it knows that the best food is often underneath the rocks.

The lessons that accompany this animal are all about composure. Things happen unexpectedly in life. Our initial reaction to these occurrences largely determines the level of resource we will be able to bring to the situation to deal with it. If our reaction is promptly negative, our judgment will tend to be clouded and irrational. If on the other hand we can muster a positive first impulse, we’ll tend to stay calmer which helps us in two ways: first, we’ll have a clearer head (higher resource base) to work with, and second, we’ll avoid acting in regrettable, foolish, or dangerous ways.

The classic example in Roger’s course is that of driving on the freeway. Inevitably, someone will cut you off, not signal their lane change, stop too quickly, block the fast lane, or any of a myriad of frustrating actions. When any of those things happens, what is your reaction? Do you tend to give them a special hand gesture, honk, say some choice words, or in some way get agitated and upset? If so, this unfortunate occurrence has just robbed you of essential resources such as calmness and clear headedness. (Road rage is an example of an extreme consequence stemming from impulsive, negative reactions.)

Instead of the normal negative burst following a road “surprise”, what if you were to simply say out loud, “What a great swerve!”

Now saying that in response to an otherwise negative occurrence doesn’t solve the problem you may be facing. What it does do is assist you in maintaining composure or getting composed. When an unexpected problem occurs, you want to have your wits about you and a full, clear head.

Not always easy to use or remember to say but Audrey and I have found that this simple phrase—What a great swerve!—can certainly take the harsh edge off tough situations. It doesn’t solve our problems, but it helps us to be calmer, not quit, and deal with our challenges more effectively. (As opposed to staying in bed and turning up the electric blanket.)

Just like the platypus gets excited when bumping into the rocks, we too can take a positive outlook when we bump into obstacles, trusting that great good can come from what we uncover or learn as a result of the trial or challenge.

We had another unexpected surprise today. Talitha was just supposed to go into the clinic to get her final dose of Vincristine. In the process, they took her vitals as they always do and found she was running a high fever. And because her ANC is still at zero, they admitted her to the hospital…again.


(darn it…)

Tuesday, March 23, 2010

Families Can Be Together Forever

Thank you for the many kindnesses to our family. I think we’ve always been believers in the power of prayer, but our awareness of the Lord’s loving hand in every area of our lives is more intense now.

I think our family is holding together pretty well. We all have our days when things seem to falter more than usual but we try to keep going as best we can and things seem to work out somehow. I know God is helping us and that brings peace. (Many of you have been His angels to sooth and lift us.)

Talitha is taking longer, earlier naps than usual. Her little body is plum tuckered out. We are trying to figure out why she is in such pain when her bowels are active. And then when we change her, she cries as if in severe pain and we see no visual evidence on the exterior that can explain it.

After all yesterday’s drama over Tali’s central line, we are grateful the latest repair work is holding up. I just keep thanking the Lord that we have another day with her. She brings such joy to our lives.

Knowing that our family can be together not just in this world but in the life to come is sweet, gentle music to my soul. Makes me want to share the Good News all the more when I think that some people don’t yet know how their family can be a forever family.

Tali goes to Salt Lake tomorrow for her last chemo injection of Vincristine. Yay!

Monday, March 22, 2010

Can it get any worse?

What an “adventure”!

Talitha’s central line ruptured last night a little before 8PM. This constitutes an emergency for which we’ve been trained to have special clamps on hand which we quickly place between the rupture point and the blood flow.

(Tali’s central line was surgically installed back on January 11th prior to beginning the first induction cycle of chemotherapy. This line is inserted into her chest and empties into the blood flow near the heart. As previously explained, some of the chemo drugs like methotrexate are so toxic that if they were administered through a peripheral IV in the arms or legs it would burn the flesh. By entering the body through the central line into the chest, the active blood flow pumping in large volume by the heart quickly dissipates the chemo throughout the body avoiding tissue burns.)

Because the hospital that’s five minutes from our home is not equipped to repair these pediatric central lines, we drove an hour to Salt Lake to the PCMC. We’d called ahead so by the time we arrived at the 4th floor ICS unit, the charge nurse had a repair kit ready to go. In less than an hour, the line was (supposedly) repaired and we were on our way back home.

At 3:30 AM, Audrey heard Talitha fussing so she got up to change her diaper. Since it had been more than the prescribed four hours, I also got up and removed the emergency clamp that had kept the pressure away from the point-of-repair so the glue could completely set. As I laid Talitha in bed, I FORTUNATELY felt something wet. We turned on the light to find blood on the bed and soaked through the gauze wrapped around the line repair site.

(When we’d gone to Salt Lake the first time, we took Afton and Madeline with us to stay at Grandma’s house since they didn’t have school today. Before leaving, Afton said a pray for us asking that we make it safely to the hospital. She thanked the Lord that we’d notice the broken line so quickly. Hours later, I found myself quietly thanking the Lord again and again throughout the day that for some reason, I felt that wet spot and didn’t leave the room at 3:30AM with her central line rapid bleeding. Tali’s life was preserved…again.)

Trip #2 to Salt Lake was a bit less animated though Talitha did try for a little while to cheer her parents up. Same scenario as the first trip: an hour drive to Salt Lake to the PCMC, repair kit was ready to go and the very experienced charge nurse who has done more of these repairs than any other nurse on staff apologized and repaired the line again with even more care and more glue. Then back again another hour’s drive to Provo. Only this time, Talitha was beyond exhausted and got sick and threw up all of the milk she’d been drinking to help calm her from what must seem to her an endless litany of private-space invasions.

We’ve had a number of trials over the years as everyone does. And when we have thought we were at point it couldn’t go lower…it does.

So, I guess it’s natural to ask the question, “Can it get any worse?”

In case you've asked that question and maybe haven't received a definitive answer? The answer is: YES. (Maybe we'd all be better off if we stopped asking that question.)

We arrived home in time to see Trevor and Malorie get up and get ready for school. We went back to bed until Talitha woke up and we had to get our day going...again.

The home health care nurse came around 9:30 to draw blood. The nurse saw evidence that Tali’s platelets were low even before getting the labs back. She started having bloody noses and red dots on her skin. Then after the nurse left, we noticed that the wrap around the line repair area was soaked with the saline/hepron they used to flush her lines after the blood draw. No way was the line broken again.

Yup…trip #3.

Now things were getting stressful. Talitha’s platelets were down to 6—they give transfusions if the platelets get down in to the low 20’s or teens. At a 6, she has practically no blood clotting ability. And with the central line broken for a 3rd time in just over 12 hours, they had to insert an IV in Tali’s wrist to give her platelets.

This time, the repair work was done in the Oncology clinic at the PCMC in Salt Lake and we spent the day there.

Tali received the platelets, the nose bleeds stopped. I suggested they keep the peripheral IV in her arm until we were certain the central line fix held but they talked me out of it.

No sooner had they removed the wrist IV than Talitha broke out in hives—a reaction to the platelet transfusion. The oral medicines to treat the adverse reaction would take too long to work in her system. The central line was clamped off and they wanted us to leave it clamped for another 6 hours.


I just couldn’t stand the idea of them putting another IV line in her arm or leg. So when they said that normally, the central lines can be used two hours after repair, we made the decision to try it and risk another rupture. All of us including the nurse in the room prayed and prayed and prayed. Please let that repair hold…please!

It did.

Talitha received the medicines, the hives left, we made it back to Provo a little before 7PM. Everyone’s still alive.

Can it get any worse?

Of course.

More importantly: Can it get any better?

It did and it does.

I’ve gone on way too long tonight…but...

...let’s remember for just a moment why we’re here on earth. The scriptures make it very clear that this is a testing ground. We’re going to have the OPPORTUNITY to experience trials that take us beyond what we can handle. That’s OK. And the reason it’s OK is because we’ll never be taken beyond what God can handle.

In that light, can you see why trials can be so valuable? If we’ll just hold on, we’ll get to experience what the hand of God really feels like. We’ll know when we’re beyond our own ability to cope and bear the burdens. And when we exercise faith in those hard, hard moments (no matter the length of the "moment")…we have the privilege of seeing and knowing and feeling a heavenly strength and power that can come in no other way than when we trust completely and stop fighting God. He loves us beyond our comprehension and can make WAY more out of us than we could if left to our own devices.

So tonight, I’m celebrating the trials. Not because I've gone crazy--though Audrey may question that sometimes--and not because I have a desire for more pain. (I really don't like pain.)

Said differently, I'm celebrating God's will, His light, His mercy, His power, strength, and wisdom. He's flooded my life with miracles and grace beyond what I thought possible. The ways He's answered my deepest, heartfelt prayers have been so different than what I thought I was asking for--and vastly superior.

With the perspective that He is helping me see, I'm learning that it's not about how many times a central line can break in one day. It has a lot more to do with my response and attitude--toward God, myself, my family, my neighbors, my friends, even total strangers--when those problems of life happen... regardless of how exhaustingly frequent.

Sunday, March 21, 2010

Central line issue...

Talitha's central line got a hole in it this evening and started bleeding. We placed one of the emergency clamps (we always have one with us) upstream from the breech and the bleeding has stopped.

We're on our way to the PCMC in Salt Lake now where they expect to be able to repair it. We hope this is just a "routine" issue.

I'll try to give more of an update tomorrow.

Thank you for praying for Talitha.

Saturday, March 20, 2010

Hair Update

Talitha lost a lot of hair after the first induction round of chemo. Then not so much after round two. We're still watching to see what the impact of this third round will be.

Most of the children being treated for cancer that we see when Tali is at the hospital have already lost their hair. I guess each case can be somewhat unique. Some lose their hair faster than others. Tali's hair is very, very thin now but she still has some. (Audrey noticed that her beautiful, long eyelashes are starting to thin now too...)

I think her energy levels are improving although she still gets tired quite easily. We also noticed she was having earaches today (but no fever). We were able to give her some drops in her ears which helped ease the pain. I know I keep repeating myself, but we really, really hope we can keep her here at home for the remainder of this 3rd cycle.

Thank you for your prayers and faith. It's really helping.

Friday, March 19, 2010


Yesterday's blood test results came back mixed. The white blood cells and absolute neutrophil counts (ANC) were through the roof (yay!), but the red blood cells (hematocrit) were so low Tali had to go in for a blood transfusion this morning. (Her platelets aren't bad or good...just ok. She had a lot of platelet transfusions after cycle #2. We'd love to see her platelets bounce back on their own this time.)

The neupogen shots really gave an extra strong boost to the ANC sooner than during the last two cycles in part, they say, because she has avoided infection this time around. (Let's please keep it that way.)

Tali is experiencing more nausea this time around and has a hard time keeping significant amounts of food down. Maybe we're trying to push her to eat too much since we're concerned about her weight loss. I don't know. Hopefully, the nausea will mellow now. (We've never had a skinny baby.)

Thank you for the many acts of kindness. We are so grateful for the help. Sometimes it catches us completely off guard and makes us cry (the good kind of tears); like today when I went in for a long-overdue haircut. I went to pay and was told someone had pre-paid for my haircut. Unbelievable. I asked who I should thank and was told it was strictly anonymous. All I could do was thank the Lord.

As a boy growing up with a family that loved to sing, one of our favorites was a beautiful song called, "Consider the Lilies of the Field". I think we're experiencing some of what the scriptures behind that song are trying to convey.

"Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on...Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they? ... Consider the lilies of the field, how they grow; they toil not, neither do they spin: And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these. Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed? ...for your heavenly Father knoweth that ye have need of all these things. But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you. Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof." Matthew 6:25-34

Praise be to God for His matchless love, light, and power.

Thursday, March 18, 2010

Cherry tomatoes

Audrey just got back from the store with a carton of cherry tomoatoes. Talitha's tired eyes lit up when she saw them. She gave Audrey a kiss and a big hug; absolutely melted mom's heart. Tali loves tomatoes!

It's been so nice having big sister Elisa here at home for a week during her spring break from college. Elisa and Talitha have been nearly inseparable as Tali knows her big sister will do ANYTHING for her. So, they've been going on walks around the house, reading books constantly, and playing with toys. (Not to mention the couple of on-line videos of dogs that Tali loves Elisa to play over and over and over and over.....)

Wasn't too long ago that tending duty was a chore for the older kids. Now, they can't get enough time with their baby sister. The philosopher, Thomas Paine, said, "What we obtain too cheap, we esteem too lightly." In that light, I guess the increase in love and willingness to help makes sense becuase it's not just us parents in the home that have had to pay a price; the other children have likewise needed to make big adjustments.

There've been a few more smiles around the home these past couple days. The Lord has blessed us with a moment to come up for air.

Thank you.

Wednesday, March 17, 2010

A little bit of bloomin' luck...

It was back up to the hospital today to get the "day 8" of Vincristine. This is the chemo Talitha gets on days 1, 8, and 15 of the cycle. It was really uneventful until I started asking questions about what was coming and if I could get a copy of the names and info of the chemos they'll be using for the bone marrow transplant.

Before I left I had a calendar and 4 pages of info on the 2 drugs they'll be using to wipe out her bone marrow. I didn't allow myself to read them until I got home for fear I'd puke on the way. My stomach always does flipflops when I read about them (still) and/or we start another round.

We didn't need to be there until this afternoon so Tali was able to take a much needed morning nap. She is taking 2 naps a day right now because of the low energy again. It is amazing to see how when the other kids start playing with her, she is no longer so tired. She loves them so much.

We are so grateful for all the prayers that are being said in her behalf. We feel our whole family is being carried on the wings of prayer at this time. We are touched by all the kindness and love that is being shown. We don't feel deserving of it. We know that all of you have trials and struggles of your own and we want you to know that we're praying for you. All of you. Friends, family, and those we've never met but have jumped on this journey with us. We really do pray for all those who are praying for Talitha. We love you. Thank you.

We're feeling very lucky today--appropriate for St. Patrick's Day--to have Talitha home tonight; that she is eating, has no mouth sores, bowels functioning properly, and is sleeping sweetly in her crib.

Tuesday, March 16, 2010

Broken lines

Rough start today.

Two of Talitha's IV lines broke spilling chemo and flushing solution onto her and her bed during the night. (Sure glad Aunt Monica-the nurse-was there to help!) The hospital is using some new, supposedly better chemo IV tubing/connectors. Since last Saturday, there have been three line breaks and/or connector malfunctions during chemo injections. Suffice it to say, Audrey had several visits from groups of hospital administrators today trying to re-assure her that this is not normal.

Trials within trials; hard not to get discouraged.

But if trials can double up, so can faith. And if faith, then prayer. And if prayer, then gratitude.

The Lord helped us through another day...just like He always does.

The day ended on a huge positive: Talitha is in her own bed at HOME tonight!

Monday, March 15, 2010


Talitha was so excited to see her mom again. She just held her around the neck for the longest time. When it was time for me to leave and head back to Provo, Talitha said questioningly, "home?"

We hadn't heard her say that word before and she repeated her little question several times hoping for a different answer than what she was getting.

Hopefully, Audrey will bring her home late tomorrow. We all are hoping she can have a good long string of days, even a full week or more without having to be admitted for SOMETHING.

This is the last "Induction" round of chemotherapy. Next up are the three rounds of "Consolidation" chemotherapy. Those will be the heavy hitting rounds that knock out her bone marrow each time. (I know they have over 100 million of her own stem cells collected and in a freezer somewhere to be used to rescue her when the time is right, but the idea of killing off ALL her bone marrow (?!)...I'm just not too excited about that.)

But that's not tonight's concern.

I'm praying she can come home for as much of the next two weeks as possible.

Tali's too young to have watched the Wizard of Oz yet but she's already agreeing with Dorothy: "There's no place like home!"

Sunday, March 14, 2010

If you're happy and you know it...

Well, it was dad that had tired eyes today...

Talitha seemed unusually energetic for this stage of a chemo cycle. We played, sang, read books...and took some long "walks". She's no longer being quarantined because her blood counts are still so good. So, we took the stroller out for a spin around the ICS overflow floor and later took a wagon ride clear over to the connecting glass corridor between the PCMC and the Moran Eye Center.

Tali was quite cheerful and even laughed a bit at some of dad's crazy antics. But the best moment by far was when we sang "If You're Happy and You Know It". Her eyes were animated as she gave everything she had to be enthusiastic for each part of the song from "clap your hands" to "stomp your feet" to "shout hooray"...and "do all three."

Then she asked for more...again...and again.

If you've ever wondered if you can actually influence your own happy level and how good you feel ... I saw it happen as Talitha forgot about her aches and pains and list of reasons to be sad and poured her little heart into smiling and doing what actions and words she could for a few beautiful minutes today.

Saturday, March 13, 2010

Tired eyes

Arrived at the hospital tonight to switch places with Audrey. First thing I noticed about Talitha: droopy, tired eyes. Another new blanket arrived today from a long time friend from High School and I presented it to Tali. She immediately brightened a bit and even took an interest in the card that came with the blanket.

The Methotrexate cleared her system even more quickly this round and so she's already begun the next chemo drugs including the one that is hard on the bladder. (They rescue the bladder with a substance called MESNA that coats the bladder to prevent damage.)

She's really trying hard to be brave but I can tell she just plain doesn't feel good.

I sang with her and prayed with her before putting her to bed a little earlier than usual because she was saying "ni-night" to ask to go to sleep.

Even though I'm feeling peaceful and strong tonight, the tears still rolled easily down the cheeks while I held her. The combination of love, concern, heartache, and gratitude gives me serious "hay fever".

Friday, March 12, 2010

How's your baby doing?

I’m not quite sure what to say when someone asks how Talitha is doing?

Used to be the “hi, how are you?” followed by the “fine, how are you?” was standard greeting fare.

That doesn’t really work now.

Talitha’s not doing fine. She has cancer. And you fight this kind of cancer with dangerous poisons carefully labeled and handled with special gloves.

Today was hard for Audrey because there was a loud and wailing teenager in the room next door that just couldn’t be consoled. Earlier in the day this teenage girl received a dose of the now familiar Methotrexate and was in so much pain she kept asking for morphine. But it was more than pain, I’m sure. Fighting discouragement, and nausea, and ‘why-me-ness’ can just really add up and overwhelm. Most of the children at the PCMC are able to cope better than today’s neighbor did but it makes us wonder what Talitha is really feeling because she can’t verbalize most of what is happening in her life.

Is she in greater pain than what she shows? Is her pain threshold really that high? Is she being spared some of the pain because of the many people praying for her? Is it a little of both or something else?

We just don’t know.

And that’s what’s so hard about this journey. We’ve never done it before. We don’t really know what Talitha’s going through. And we don’t know what the outcome will be.

There’s a framed sign on our kitchen wall given to us by Brent and Julie Davis who have a granddaughter also fighting a brain tumor. It says:

“Faith makes things possible…not easy.”

That sign has been there for several years but my comprehension of its message is brand new. We’ve had to let go and trust that Talitha is in His hands. And if that ‘s the case, then come what may, she’s in the best possible hands and is therefore susceptible to the best possible outcome—whatever that outcome becomes.

How’s your baby doing?

She’s not fine but she’s doing great.

Thursday, March 11, 2010

Self-sufficiency and Dependency

According to the definition in Wikipedia, “Self-sufficiency refers to the state of not requiring any outside aid, support, or interaction, for survival.”

As a conservative with a strong belief in personal accountability and the importance of self-reliance (as opposed to dependency on say the government), I’ve thought a lot about our current trial and how I’ve become dependent in ways I never dreamed I’d have to be. I’m not to the point yet of drawing too many new conclusions on this particular subject, but I’m reminded once again of how little I know and how much room there is to grow.

Less confusing to me—at least now—is my dependency on the Lord. I think for many years I tried to be good enough that maybe I wouldn’t be so dependent on Christ for salvation; maybe I could kind of save myself. I shudder now to think it was ever even possible to be so wrong about something so important.

“Peter saith unto him, Thou shalt never wash my feet. Jesus answered him, If I wash thee not, thou hast no part with me.” (John 13:8)

As simple as the Gospel of Jesus Christ is, there seems to be a real tendency to misunderstand the absolute necessity of being saved by Christ. We may keep the commandments diligently, we may do all we can to be faithful and live good, clean lives. At the end of the day, we cannot save ourselves from physical death or spiritual death. Christ is our only hope. And His message of hope—the good news to all the world—is that He does indeed have the power to save us if we will (1) have faith in Him, (2) repent, (3) be baptized, (4) receive the Holy Ghost, and (5) endure to the end.

For me, the fight to save Talitha’s life has compelled me to humble myself more than ever before and call upon the Lord and plead with Him to do things on behalf of Talitha and our family that I clearly cannot do myself.

What concerns me just a tad bit is the realization that I am no more dependent now on Christ (and His atoning power and grace) than before. What has changed is my increased awareness of this dependency due to a trial beyond my capacity to pretend otherwise.

I’m so grateful for His patience in teaching me and for allowing me the space to learn even if it is through a difficult trial. (I guess I’m coming to realize that I might not have learned some of these necessary lessons in any other way.)
They’ve started Talitha on Leucavorin to help rescue her from the highly toxic Methotrexate. If her pace is anything similar to the first two induction rounds, it will take a good 3 to 4 days to clear the Methotrexate out of her system so they can proceed with the other chemotherapy regiments.

She ate a great dinner and is still drinking lots. The chemo is very hard on her bowels and causes her significant discomfort when trying to go to the bathroom. Very hard to see her cry when she’s just trying to process normal bodily functions.

They will be checking her ears again tomorrow to see if the redness is cleared. Please pray for Talitha that her ears may be well and healthy. We urgently hope they will not feel it necessary to pump more antibiotics into her system.

Wednesday, March 10, 2010

Hearing test...then started round 3

Anytime there's sedation planned, Talitha can't eat solids after midnight and any liquids have to be clear (e.g. no milk or orange juice; but water or even apple juice are ok because you can see through them). Then no liquids after 7am.

We always feel fortunate to get an early slot on sedation days so Tali doesn't have to go so long without anything to eat or drink. Such was the case today as Talitha had to be there by 7:30am.

The hearing test results for this third test were similar to the first hearing test--high range is doing great, low range is a bit impaired due to fluid in the ears. I hope and pray her hearing may continue to be preserved and that her ears may be kept from infection.

All her morning blood labs came back with strong enough counts that they did proceed with the third induction round of chemotherapy. Vincristine... followed by Methotrexate...funny taste in the mouth...diaper changes every two hours...and so forth...

One of the biggest challenges with prolonged trials is weariness (and not just the physical kind). Adrenaline can only take you so far. After the "novelty" of the challenge wears off, can you sustain faithfulness and a positive attitude long-term if called to do so?

I think the answer lies in the simple, daily habits that sustain life. I might grow weary of eating every day...but stopping that fueling function wouldn't be healthy, at least not for very long. I might decide I'm tired of constantly breathing in and out to take in oxygen and expel carbon dioxide--after all, it is rather monotonous don't you think?

Just as the physical body needs fuel and oxygen to survive, so do our spirits. Spiritual malnourishment can have devastating effects on how we feel, or cope, or even live. Just as we feed our physical bodies regularly, we must also nourish our spiritual bodies as often as possible. Spiritual weariness may be an indication that our caloric intake from spiritual food is waning.

A prophet of God once asked a group of people who had been faithful and strong in the past an interesting question: "And now behold, I say unto you, if ye have experienced a change of heart, and if ye have felt to sing the song of redeeming love, I would ask, can ye feel so now?"

In other words, you used to believe, and you used to be grateful for all God has done for you...but what about now? Do you feel that way still? Or can you feel that way again?

Our ability to answer in the affirmative hinges largely on how well we are consuming/digesting the spiritual essentials.

I'm so grateful for an abundance of spiritual food that strengthens me when I'm weary and lifts me when the road feels too long. The scriptures are packed with nutrients (no wonder the Lord invites us to "feast upon the words of Christ"). Prayer soothes, refreshes, and fills.

No matter the length of our individual trials and challenges, I hope we will never stop eating and breathing the spiritual essentials that support, sustain, and enliven.

Tuesday, March 9, 2010


Talitha enjoyed the night in her own crib and then was up early and on the road to Salt Lake again before sunup.

Today was another kidney test at the University Hospital (next door to the PCMC).

Tomorrow is another sedated hearing test. Then we expect they will admit her to the hospital to begin chemotherapy induction round #3.

Not much time at home for her during the current cycle that just wrapped up.

We're grateful for another night in her own bed.

Tali's little personality is coming out more and more. She adores her siblings! When they laugh, she tries to laugh. When she saw Malorie chewing gum tonight, she just stared and stared and then started making chewing motions as if she had gum too.

She answers with vigor when asked questions whether it be an exuberant "OKAAAY", a more casual "yeah", or a quick but firm "No".

She has become quite a blanket enthusiast. In her world, it is impossible to have too many blankets. She has been the recipiant of three new blankets made by loving neighbors just this past week. Two of the three she received on Sunday in the hospital and immediately wanted to take them on a test drive. After feeling their silky side, she said "ni-night" which is our clue that she wants to lay down. And she did, cuddling her new blankets.

Then tonight, another neighbor stopped by with another blanket with lots of varied patterns, shapes, and intricate stitching. Tali couldn't wait to open it up and take a look. She literally gasped a rapid intake breath--an exclamation of anticipation as she started unfolding it. She studied it and ran her hands over it and opened it more and more like it was a favorite book. Then she caught a glimpse of the other side with its polka dots and decided it was "ni-night" time ---code for let's see how this one rides.

Later she sat on my lap here at the computer looking for the chance to "help" me type and work the mouse. She asked to see the "ruff-ruffs" which I correctly interpreted to mean look at pictures of dogs on-line. Oh, how she loves seeing dogs.

As I pulled up the first set of pictures, she said, "cuuute"--which about floored me and got me laughing and calling for Audrey to come hear. Tali was pleased to oblige and repeated her "cutes" as often as she'd get a response from us (which usually involved a chuckle or a downright laugh).

Her endless asking for us to read her books at the hospital is paying off in the form of a rapidly growing vocabulary. We are so grateful for this especially following the scare after surgery when she lost her ability to talk. (Her little brain needs all the help it can get after the trauma it's seen in her young life.)

Prayer works.

Thank you for your prayers!

Monday, March 8, 2010

The Fantasticks

When the call came from the president of the Provo High Drama Club, I was speechless. Did I really hear it right? Steven Pelham invited our family to come to the Monday night performance of The Fantasticks. They dedicated tonight's performance to Talitha and pledged the entire receipts from the sold-out performance to her recovery fund.

This kind of kindness humbles me to the core. Steven explained that all the cast members/production crew/drama students decided weeks ago that they wanted to do this service to help and then he expressed his heartfelt well wishes to our whole family along with everyone's hope for Tali's complete recovery......
Do you see why I was speechless?

The performance tonight was impeccable. Well directed, well acted, well produced...and well supported. (Thank you to all who came tonight to both enjoy the performance and to donate funds to help Tali. Many of you were turned away due to the sell out. For those that didn't get to see the show, I hope you heard that they will be doing a special encore performance tomorrow (Tuesday) night. Well worth your time; you won't be disappointed.)
To all the cast and crew, I thank you for sharing your wonderful talents and for opening your hearts so wide to make a difference in such a personal way. Thank you to Bob Bauer, the director--a friend to our family and mentor to our oldest daughter, Elisa.

And thank you again Steven for that phone call. Please let everyone involved know how much this has meant to us.
Speaking of Fantastic: Talitha is home tonight! (for a few short hours)
The fifth day of stem-cell harvest was more than enough to get us to 100% complete. Thank you to the doctors and nurses for their tireless work night and day and throughout the weekend to not give up.
(Erin, the technician that ran the stem-cell collection machine for the past five days has been doing this for the past 13 years. She said it's never taken this long to complete the harvest for someone so young in all her years running that machine. We just think that Talitha understands the importance of stem cells and didn't want to give them up without a fight. :-)

A rough five days but she made it through thanks to so many prayers and people pulling for her.

Thank you to everyone and thanks to the Lord.

Sunday, March 7, 2010

Wider...but more passable...

A few years ago I was sitting in a hotel room in Los Angeles looking out over the night time lights of the city. I don't remember why I was so deep in thought. I just remember thinking about life and what it's all about.

Without much warning, I was given to know that the gulf that separated me from God was wider than I'd ever before imagined. The thought was so real and so heavy, it was like someone just took the breath right out of me.

Fortunately, another powerful message was delivered right on the heels of the first: the distance is also more passable than I ever before imagined.

To say it was an emotional experience is an understatement. The experience was as real as any I've ever had and taught me more deeply than ever before that the "good news" of Christ is both sorely needed and absolutely true--even beyond what I'd ever considered.

In a world that too often seems bent on its own destruction, the good news of Christ is simple, timely, and refreshing. What is this good news?

The good news is that there is a way to find peace, happiness, and joy in this life and in the world to come. The good news is that we don't have to settle for disappointment and heartache or loss. The good news is that God sent His Son. Some people call this the Gospel of Jesus Christ. Whatever you call it, it's good news because it means there's a way to cross that impossible barrier that stands between us and God.

Real happiness and joy is what God is all about. But death and hell try their best to keep us from that joy. The good news is that Christ has the power to save us from both death and hell; in other words, Christ has the power to carry us accross that impossible distance that separates us from all that is worth living for and striving for.

I've learned for myself, independant of all the ancient scriptural accounts and modern witnesses of countless men and women, that Christ is real. I've experienced first hand His incomparable ability to heal deep emotional wounds, console aches I thought were too deep to touch, and make burdens light that I thought might very well crush me.

I know that problems, pain, and challenges of every kind can make you go weak in the knees and doubt yourself and God. But I also know now from experience in some intense fires that no problem or challenge is beyond His capacity to reach and to provide rescuing help.

He is called our Savior because that's what He does.

Only someone who has died for us and paid such a heavy ransom for us could possible love us so unconditionally.

I testify that He lives. I promise that He has the power to bridge that impossible gap. In fact, He has already done it!

I'm so grateful to Him for literally saving me and filling me with hope and joy even in the midst of life's turbulance.

Talitha continues to inspire me (and many of the medical staff) with her resiliant spirit and ability to do hard things without becoming hardened. She's quick to forgive the inflictors of pain and anxious to find positive things to do rather than sulk and be miserable. The collection process takes 5 hours each day and she has to be relatively still so that the bundles of lines connected between her and the machine don't get overly tangled or kinked.

She had a joyful visit from her siblings tonight after she was free from the tethering lines. She laughed and played and let them "walk" her around the little room back and forth. (She's not allowed outside her room because of the contagious C-Diff bacteria she has that must not be allowed to come in contact with other immuno compromised patients--see explanation of C-Diff in Tali's Medical Stuff Glossary on the right hand side of the blog.)

Day 4 brought a harvest slightly less than yesterday's but still enough to keep her here another day as the doctors fight to collect enough stem cells this round so she doesn't have to do this again after chemo round #3. She's about at the 87% complete mark.

Saturday, March 6, 2010

There might be something even better...

I remember a family night a few years ago when our children were quite a bit younger and Talitha was still waiting her turn to come to Earth.

We did an activity to help us gain a little perspective. First we all laid down on the floor in our home and took turns describing what we could see. Then we stood up and again described our new field of vision and noted what we could now see that just wasn't possible to see before. We repeated this exercise again and again climbing on chairs, then on ladders outside, then up on the roof of our home, then driving up into the moutains where we could overlook the entire valley.

After some great discussion, we concluded that each time we climbed higher the difference of what we could see or comprehend grew exponentially. Had we limited our perspective to the lower, limited viewpoints, it would have been easy to draw flawed conclusions about how the world works or why things are the way they are.

Finally, we considered what God can see from a vantage point far higher than the mountain we were standing on or even the orbiting flight of a Space Shuttle. If we could see so much more with each step higher, what must God see and comprehend from His infinite vantage point.

The answer is, of course, that He sees it all and comprehends it all and therefore has perfect knowledge and understanding. Therefore, we can place our faith and confidence in Him without reservation.

How often in life do I get frustrated that things are going wrong when my capacity for such judgement is gathered from a point no greater than if I were laying on the floor.

Thankfully, the Lord has ways of inviting an improved perspective. He figuratively takes us to higher and highter vantage points at a rate that matches our willingness to trust in Him and have faith in his endless vision. Each of His commandments we keep, every scripture we read, every prayer we feel or speak, every moment in worship on Sunday and throughout the week lifts us to new heights and improves our ability to see things as they really are rather than seeing only in the blind, limited way of the world.

I have faith that the Lord can heal Talitha just as easily as he raised the daughter of Jairus from the dead. I know He hears my prayers because of the comfort He sends and the miracles I've personally witnessed. When I cry out in pain or feel my heart will break he takes me to higher ground and shows me the purpose of this life and that there's so much more to the eternities than what I can see from the laying-on-the-floor perspective.

Just this week, as I spoke to an amazing artist who ironically is losing her physical sight but can see so well spiritually, the thought came into my mind that there might be something even better... than this artist's eyes being healed right this moment or Talitha being cured from cancer immediately today.

From the moment I accepted that Talitha is in His hands and that the bounds are set by Him of how far the opposition can advance, I accepted that He works from an Eternal perspective and builds the best possible outcomes that transcend this world and lift us to the highest possible point of joy and happiness that we will allow. (For afterall, He cannot force us to be happy or make us receive all that He delights to give us according to His tender mercies.)

It was another hard day as we learned that the 3rd day of harvest yielded "only" an additional 18% putting us at 73% of the needed total. (That stem cell harvest machine is amazing! Looks like a giant circuit board with tracks of tubing, pumps, a centrifuge, and collectors. Somebody definitely stayed up way late one night coming up with that kind of creativity.)

To fight off discouragement I found myself considering that maybe, just maybe, there might be something even better...than getting the harvest done as fast as I want it to be done. Just the act of considering that God can prepare something even better than the best that any of us floor-dwellers can imagine has a way of calming the nerves and relaxing the tense muscles.

I'm still going to hope for the best that I can see is possible, but I'm also going to be open that there might be something even better...

Friday, March 5, 2010

Snow Globes and Accountants

Well, I didn't translate the data correctly and so my math was wrong. Turns out the day #1 harvest (Thursday) only yielded about a third of what was needed (not the 70% I reported).

Many have heard me explain that I became an Accountant/CPA for one reason and one reason only--my dad. My dad has always been my hero and since he was a CPA, that's what I always wanted to be.

I like to tell people: "There's 3 kinds of accountants; those that can count and those that can't."

So, let me start by correcting the report:

Day #1 (yesterday): 5.5 million stem cells harvested (per kilo) = 60.5 million total
Day #2 (today): 2.8 million stem cells harvested (per kilo) = 30.8 million total

We've got to get to 165 million total and we're only at 91.3 million after two days. (Correct percentage complete so far = 55%)

Another clarification: we want the CD34 stem cell markers to be as high as possible during harvesting. They jumped from 9.9 on Wednesday to over 32 yesterday (the peak); they were down to about 18 this morning. So, they did time the peak perfectly. They just didn't get the yield they expected.

It's beginning to look like we may have to harvest again after induction cycle #3. They are attempting to bolster the CD34 marker cells by starting what's called the "hard to mobilize regiment". This involves hitting Talitha really hard with large quantities of growth factors including additional doses of the neupogen she's used to and now an additional one that's called GMCSF. They are trying to "shake up" her bone marrow to overproduce and spill out the CD34 markers into the blood stream for easier collection. (In the '80's, they used to surgically open up bones and harvest right from the actual bone marrow itself. Thankfully, they have found a far less invasive answer that filters blood instead of poking around in bones.)

Think of a snow globe. All the little white glitter rests at the bottom till you turn it upside down and shake, shake, shake. Then for a few moments, you see the water filled with so many specks it looks like it's snowing.

That's kind of what's happening in Talitha's body. Stem cells (CD34 markers) reside within the bone marrow like glitter resting on the bottom of a snow globe. Chemotherapy comes along and shocks Tali's system (turns her upside down). Then neupogen overstimulates the bone marrow (shakes her like crazy). This makes the CD34 markers empty into the blood and for a "few moments" stem cells are "snowing".

The harvest trick is to catch as many of those stem cells as possible before they settle back into the bone marrow. In Tali's case, they didn't catch enough the first time so they're trying to shake, shake, shake some more.

One tiny, eensy weensy problem with all this. Talitha's not a snow globe.

All that shaking is hard on her little body. And it hurts. Bad.

So I look through the tears for my blue wristband and I "Pray for Talitha".

Thursday, March 4, 2010

Harvest is almost 70% complete

Another early start this morning. Audrey took Talitha to the Oncology Clinic at the hospital for a 7:30am blood draw to confirm the CD34 bone marrow count was still rising. (The count jumped from 9.9 on Wednesday to 32+ today!)

From Oncology (4th floor) to surgery (1st floor): Talitha was sedated around 9am for the relatively short surgery—less than two hours—to install a double lumen catheter in her groin area.

From surgery (1st floor) to ICS (4th floor): After surgery, Talitha was brought to a room—same room she was in last Friday through Sunday—to get hooked up to the stem cell harvesting equipment. Blood was pulled out of her body through one of the catheter lumens and then put back in her body through the second lumen after the white blood cells had been extracted.

They will need to harvest 15 million stem cells per kilo of weight. (Talitha is about 11 kilos so they will need to get about 165 million stem cells.) The stem cells make up about 1% of the white blood cells during peak production so they have to process a minimum of 16.5 billion white blood cells to get enough stem cells (more if the concentration of stem cells to white blood cells is less than 1%).

As it turned out, they didn’t get enough stem cells today—only about 70% of what they need—so Tali gets to stay the night at “hotel” PCMC. (I think the blood counts shot up so fast that the ideal harvest window had already begun closing. If they had it to do over again and knew her counts would move so quickly, I believe they’d do the procedure a day earlier.) Please pray that tomorrow’s harvest will still be abundant enough to get the remaining required volume of stem cells.

During the 6 hour harvest procedure today, Talitha had to remain lying down. The harvest machine is never left unattended and when Talitha would make unexpected movements or move too much the technicians and nurses would respond very quickly to ward of actions that could adversely affect the process or be detrimental to her well being.
The idea of keeping her lying on her back all day again tomorrow without her going completely stir crazy is not pleasantly anticipated.

Why they are harvesting and freezing Tali’s stem cells: after the three induction cycles of chemotherapy are complete—we are finishing up cycle #2—then she will enter what’s called the Consolidation Phase. During each of the three consolidation cycles the chemotherapy gets even more intense to the point that it will completely eliminate all her bone marrow. The bone marrow is the originating factory throughout the bone structures of the body where stem cells are produced that become red, white, and platelet blood cells.

They plan to use 5 million of her own stem cells per kilo (approximately 55 million each cycle) to rescue her / rebuild her bone marrow each cycle. These miraculous stem cells intuitively know where to go when injected into the body; they move immediately to the open areas within the bones and set up shop. First they rebuild the bone marrow in as short a time as five days, then they become the respective red, white, and platelet blood cells for the body as needed.
Once Talitha was unhooked from the machine late this afternoon, Audrey was able to hold her. But while the groin catheter is in place, she must be either lying down or held at an angle if being held (she can’t be held straight up and down again until the catheter is removed).

The removal of the catheter requires that they put hard pressure on the removal area for a full 20 minutes. They’ve warned that this will not be pleasant and that Audrey should consider leaving the room while they do it. I’m praying Talitha will have added strength and courage. I never dreamed our baby would ever have to go through stuff like this.

Wednesday, March 3, 2010

Pray for a successful harvest

Somehow the blog website did not keep me logged in and I've unfortunately lost a very lengthy, detailed account of what is about to happen tomorrow as Talitha is admitted to the hospital for the stem cell harvest we've been talking about.

I will try to re-create the details with additional information after tomorrow's surgery and harvest process.

Please pray for Talitha. They are telling us it will be a very long day for her.

Thank you.

Tuesday, March 2, 2010


I came across a most interesting verse of scripture:

"Therefore they hushed their fears, and began to cry unto the Lord..." (Mosiah 23:28) What intrigues me most about this verse is the consciousness of the choice to quiet a naturally occurring emotion rather than to be debilitated by it. Not surprisingly, this conscious choice was aided by "remembering the Lord their God and [that] He would deliver them."

Since the dawn of time, people have faced trials and afflictions. The scriptures are full of examples of wars and conflicts and...deliverance. We can learn a lot about how to face similar adversities by studying the scriptures.

A theme made abundantly clear throughout holy writ is that God has the power to save and God has the power to deliver. In fact, prophets of God both ancient and modern spent and spend a great deal of time reminding us to remember. In the remembering comes strength to believe that what God has done before, He is capable of repeating.

I love the verse of the hymn that says, "We doubt not the Lord nor His goodness; we've proved Him in days that are past."

In this light, remembering is quite liberating because it allows us to productively "rejoice in and through all things" rather than languishing in dark, dead ends of doubt.

Christ has overcome the world and made it possible for us to learn and grow and progress during our time of mortal probation. Though sometimes hard to accept or acknowledge, intense, rapid learning frequently occurs during times of equally intense trial.

This is something we are gratefully learning.

Talitha's counts are jumping nicely. The CD34 count is up to 4.7 and the bone marrow transplant team plans to admit Talitha on Thursday to harvest millions of her now flourishing stem cells. Tali is feeling great and has the energy back to try more walking exercises. (She actually enjoyed her bath tonight!)

Talitha is crawling really well again now and suddenly we have to be mindful of a mobile baby in the house again. (We don't mind!) And she's eating--really good for lunch today--and a much larger variety.

The diarrhea seems to have vacated the premises and that's giving her little bottom a bit of a breather. (Yay!)

So, a good day. A calm day. An I'm-grateful-for-everything-and-everyone day!

Monday, March 1, 2010

March Madness

Traditionally if March comes in like a lion it goes out like a lamb and vice versa. I am fully aware that it represents the weather activity yet I can't help but wonder if it could forcast anything in Talitha's journey this month. I'm a little hesitant in saying I hope it will do the lion/lamb thing rather than the other way around. Unless of course it's a relatively small lion and a very huge lamb :o). How big does a complication/problem have to be to qualify as a "lion" anyway?

In my reading about medulloblastoma I came upon some advice from other parents of chemo-kids. It said something like, "Don't get too excited about the ups or the downs because you will have both. Instead, try to stay at a more even level, appreciating each step." Now that's hard to do. But, I do get the wisdom behind it. There are just so many ups and downs on this ride that taking things in stride keeps you from going insane with emotion.

Talitha's counts are on the move--finally! Her ANC was zero yesterday and 200 today. The number they (bone marrow transplant team) are watching is her CD34--some kind of bone marrow measurement. Today it was at 1.4 and it needs to get to 10 for them to start collecting. We'll see what tomorrow brings... a lion or a lamb?? It won't matter because I'm taking everything in stride...

Talitha also gets her follow up hearing test and kidney test on Thursday and Friday respectively. We're beginning to feel we need to relocate to Salt Lake with all this madness.

It was a really nice day today as far as weather goes. In fact I would say it was a medium sized lamb.