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.