We had a family planning meeting tonight.
School is out for the summer. Talitha is through with her protocol treatments. Everyone is living under one roof again. Time to get re-acquainted as a family.
I tried to keep everyone on task with the planning but Talitha just kept distracting everyone. Tali's at a fun age where she likes to repeat things she hears. (This is cute most the time as long as older brother and sisters don't start pushing the envelope with non-age-appropriate teenager talk that gets them the "evil eye" from mom and dad.)
So, I must confess, the minutes passed without completing the summer planning session. Everyone seemed more interested in playing, and talking, and laughing.
I guess this is where I get to take a chill pill and just be grateful. After all, we've not exactly been living according to some planned script for any real stretch of time this entire year. We've had to trust that God has a master plan and gives us our daily tasks along with our daily bread...day by day.
The biblical manna from heaven didn't come in batches of weekly supply. So I might learn to be content with my daily supply and trust in Him to provide as well tomorrow as He did today. (Better a daily supply from Heaven than a weekly or monthly stash by the arm of flesh.)
Perhaps one day I will see that the only thing I control is the turning of my control (my will) over to the Lord. Then and only then will things truly be in control.
Monday, June 7, 2010
Sunday, June 6, 2010
Thank you!
When Jesus was asked which was the greatest of the commandments, he answered, "Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself. (Matthew 22:37-39)
It's easy for me to imagine what it might be like if these two commandments were kept faithfully because we have been surrounded by examples of just such Christian service toward Talitha and our whole family.
Once in a while I've made mention of the kindnesses shown our family by loving neighbors, family, and friends. I hardly dare mention specifics anymore because I know I'll mistakenly leave someone out. You've made both our hearts and our burdens light and for that we are in your debt.
You must know that we pray for you and ask that the Lord might bless you a thousand fold for your thoughtfulness and support that means more to us than you could possibly know.
We will never have the means to repay you or thank you each in the individual and personal way that you deserve. You have inspired me and shown me what's possible through your examples of loving in a Christ-like manner.
Thank you.
We can't wait to have Talitha with us at church again and for her to be out and about like our other children. She seems so well now it's hard to imagine the risks she faces are so steep. After all, she's laughing and playing and doing what I would expect a 22-month old to do.
The only outward signs of the battle are the scars on her head where the tumor was removed and where the external shunt was placed to relieve the pressure from the water in her brain. (Her hair will cover these scars up when it grows back in.) She also has a small scar on her chest where the first central line was installed and she still has her 2nd central line installed and will continue to have that, I imagine, for some time.
Other than that, the only other signs of a problem are when she gets shaky when her blood counts are low and the fact that she has to learn to walk again.
So it will still be several months of working with her to get her immune system functioning again and then we hope to be less restrictive in where and when she can go places and what precautions have to be taken.
Talitha doesn't appear to be in pain anymore--other than when she doesn't get her way (which is rare at the moment). There is still the discomfort that comes from changing the dressing on her central line and taking certain medicines but all in all, she is coping very well.
We thank the Lord for bringing us through the fire to this point and thank each of you for your hand in making the heat of the flame more bearable.
We love you!
It's easy for me to imagine what it might be like if these two commandments were kept faithfully because we have been surrounded by examples of just such Christian service toward Talitha and our whole family.
Once in a while I've made mention of the kindnesses shown our family by loving neighbors, family, and friends. I hardly dare mention specifics anymore because I know I'll mistakenly leave someone out. You've made both our hearts and our burdens light and for that we are in your debt.
You must know that we pray for you and ask that the Lord might bless you a thousand fold for your thoughtfulness and support that means more to us than you could possibly know.
We will never have the means to repay you or thank you each in the individual and personal way that you deserve. You have inspired me and shown me what's possible through your examples of loving in a Christ-like manner.
Thank you.
We can't wait to have Talitha with us at church again and for her to be out and about like our other children. She seems so well now it's hard to imagine the risks she faces are so steep. After all, she's laughing and playing and doing what I would expect a 22-month old to do.
The only outward signs of the battle are the scars on her head where the tumor was removed and where the external shunt was placed to relieve the pressure from the water in her brain. (Her hair will cover these scars up when it grows back in.) She also has a small scar on her chest where the first central line was installed and she still has her 2nd central line installed and will continue to have that, I imagine, for some time.
Other than that, the only other signs of a problem are when she gets shaky when her blood counts are low and the fact that she has to learn to walk again.
So it will still be several months of working with her to get her immune system functioning again and then we hope to be less restrictive in where and when she can go places and what precautions have to be taken.
Talitha doesn't appear to be in pain anymore--other than when she doesn't get her way (which is rare at the moment). There is still the discomfort that comes from changing the dressing on her central line and taking certain medicines but all in all, she is coping very well.
We thank the Lord for bringing us through the fire to this point and thank each of you for your hand in making the heat of the flame more bearable.
We love you!
Saturday, June 5, 2010
Home and Telethon
Talitha slept so good in her own bed last night in spite of the abundant exuberance all around her. (We have to remind the older kids that there's a baby in the house again so they'll quiet down a little earlier than what standard-teenager-time calls for.)
Everyone is now adjusting to the idea that Talitha will be home for good instead of just a few days here and there.
We don't really know for sure what our next steps are as far as follow-up tests and scans. Our next appointment with the oncology clinic is next Tuesday so I hope to be able to report more then.
Our experience tonight with the annual Primary Children's telethon on KSL Channel 5 was both interesting and heartwarming. We had the chance to meet some of the other children and their families that were interviewed. We are so grateful for Primary Children's Medical Center and the extraordinary work and service they provide.
Scott Haws, one of the anchors for Channel 5 spent a few minutes with us before it was our turn to be on air. He had notes about Talitha but took the time to speak with us and get us loosened up a bit so we wouldn't feel quite as nervous. Very nice, very professional.
It helped that the cameras did close-ups mostly of Talitha during our short, on-air segment. More than anything, we just wanted to support Primary Children's in their quest to raise sufficient funds so they will be able to continue to provide for the needs of children regardless of their respective family's ability to pay or not.
We are big fans of Primary Children's now. Never, ever thought we'd need them and would have been lost without them.
Everyone is now adjusting to the idea that Talitha will be home for good instead of just a few days here and there.
We don't really know for sure what our next steps are as far as follow-up tests and scans. Our next appointment with the oncology clinic is next Tuesday so I hope to be able to report more then.
Our experience tonight with the annual Primary Children's telethon on KSL Channel 5 was both interesting and heartwarming. We had the chance to meet some of the other children and their families that were interviewed. We are so grateful for Primary Children's Medical Center and the extraordinary work and service they provide.
Scott Haws, one of the anchors for Channel 5 spent a few minutes with us before it was our turn to be on air. He had notes about Talitha but took the time to speak with us and get us loosened up a bit so we wouldn't feel quite as nervous. Very nice, very professional.
It helped that the cameras did close-ups mostly of Talitha during our short, on-air segment. More than anything, we just wanted to support Primary Children's in their quest to raise sufficient funds so they will be able to continue to provide for the needs of children regardless of their respective family's ability to pay or not.
We are big fans of Primary Children's now. Never, ever thought we'd need them and would have been lost without them.
Friday, June 4, 2010
Three for three!
Tali engrafted on the 11th day after transplant...again. And because she never stopped eating and drinking...she got to come home!
The look on Tali and her mom's face says it all! She made it through the treatments and is now HOME!
When a cancer patient finishes his or her treatment, everyone on staff gathers round a special bell and cheers as the bell is rung three times. (Talitha rang the bell once but all the loud cheers and clapping made her shy. So her mother stepped up and rang that bell so there'd be no mistaking!)
After the little bell ringing ceremony, Talitha's brother and sisters gathered by the bell in a siblings pose. (They are all so excited to have their baby sister back.)
The only snag happened when Tali saw the playroom she used to hang out in during the induction cycles of chemo. She's not been able to visit her little stomping ground for ages since the bone marrow transplant cycles kept her quarantined in her hospital room.
She insisted on playing in the playroom and hollered plenty at the suggestion we go home. She had business to take care of and wasn't about to be deterred.
But finally, the wagon ride procession from the 4th floor to the car got underway. Oh to be outside for real instead of just looking through the window!
Three for three…and the victory bell is rung. In every way a team effort, so the celebration and cheers are for all of you.
The war is not over but this battle is won and so we say “Yay” and carry on.
When a cancer patient finishes his or her treatment, everyone on staff gathers round a special bell and cheers as the bell is rung three times. (Talitha rang the bell once but all the loud cheers and clapping made her shy. So her mother stepped up and rang that bell so there'd be no mistaking!)
After the little bell ringing ceremony, Talitha's brother and sisters gathered by the bell in a siblings pose. (They are all so excited to have their baby sister back.)
The only snag happened when Tali saw the playroom she used to hang out in during the induction cycles of chemo. She's not been able to visit her little stomping ground for ages since the bone marrow transplant cycles kept her quarantined in her hospital room.
She insisted on playing in the playroom and hollered plenty at the suggestion we go home. She had business to take care of and wasn't about to be deterred.
But finally, the wagon ride procession from the 4th floor to the car got underway. Oh to be outside for real instead of just looking through the window!
Three for three…and the victory bell is rung. In every way a team effort, so the celebration and cheers are for all of you.
The war is not over but this battle is won and so we say “Yay” and carry on.
Thursday, June 3, 2010
Look and Live
The white blood cell counts and the ANC are a little lower than they were at this point on the first two transplant rounds but there is still strong optimism that she will jump high enough with tomorrow morning's blood test that she can be cleared for departure.
But if not...
That's ok.
Tonight, I asked Audrey if she thinks Heavenly Father ever wishes we didn't get so attached to this life. I mean, in comparison to the eternities, this life on Earth really is just a small moment. But the deep friendships and family ties we form here make it hard sometimes to remember that this life is only a test...a probationary period. The "real" thing is yet to come.
It's also easy, I think, to focus a lot of attention on physical wellness but maybe neglect the even more important spiritual wellness.
I'm reminded of the biblical accounts of Moses raising up a brazen serpent on a pole to save the children of Israel from physical death on account of their having been bitten by fiery flying serpents. All that the afflicted people had to do in order to be healed physically was to look at that serpent on the pole. Sadly, many died because they didn't believe something as simple as just looking could save them.
The real significance of this "Look and Live" experience in the ancient wilderness was to point the hearts of the people to Christ who was to come. True, the purpose of the Mosaic law was to point to the great and last sacrifice of the Lamb of God, but this experience with the poisonous serpents was to emphasize the point--then and now--that it's as easy to look to Christ and live spiritually as it was to look at the brazen serpent and live physically.
"And as Moses lifted up the serpent in the wilderness, even so must the Son of man be lifted up: That whosoever believeth in him should not perish, but have eternal life. 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 3:14-16)
"If ye could be healed by merely casting about your eyes that ye might be healed, would ye not behold quickly, or would ye rather harden your hearts in unbelief, and be slothful, that ye would not cast about your eyes, that ye might perish? If so, wo shall come upon you; but if not so, then cast about your eyes and begin to believe in the Son of God." (Alma 33:21-22)
"Do not let us be slothful because of the easiness of the way; for so was it with our fathers; for so was it prepared for them, that if they would look they might live; even so it is with us. The way is prepared, and if we will look we may live forever." (Alma 37:46)
I'm deeply grateful for the physical healing that is happening with Talitha. And tonight, I'm also thinking of all the spiritual healing that has been taking place over these last months. God really is a God of miracles and tender mercies.
My prayer tonight is that we may with a brightness of hope look to Christ and live in every way.
But if not...
That's ok.
Tonight, I asked Audrey if she thinks Heavenly Father ever wishes we didn't get so attached to this life. I mean, in comparison to the eternities, this life on Earth really is just a small moment. But the deep friendships and family ties we form here make it hard sometimes to remember that this life is only a test...a probationary period. The "real" thing is yet to come.
It's also easy, I think, to focus a lot of attention on physical wellness but maybe neglect the even more important spiritual wellness.
I'm reminded of the biblical accounts of Moses raising up a brazen serpent on a pole to save the children of Israel from physical death on account of their having been bitten by fiery flying serpents. All that the afflicted people had to do in order to be healed physically was to look at that serpent on the pole. Sadly, many died because they didn't believe something as simple as just looking could save them.
The real significance of this "Look and Live" experience in the ancient wilderness was to point the hearts of the people to Christ who was to come. True, the purpose of the Mosaic law was to point to the great and last sacrifice of the Lamb of God, but this experience with the poisonous serpents was to emphasize the point--then and now--that it's as easy to look to Christ and live spiritually as it was to look at the brazen serpent and live physically.
"And as Moses lifted up the serpent in the wilderness, even so must the Son of man be lifted up: That whosoever believeth in him should not perish, but have eternal life. 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 3:14-16)
"If ye could be healed by merely casting about your eyes that ye might be healed, would ye not behold quickly, or would ye rather harden your hearts in unbelief, and be slothful, that ye would not cast about your eyes, that ye might perish? If so, wo shall come upon you; but if not so, then cast about your eyes and begin to believe in the Son of God." (Alma 33:21-22)
"Do not let us be slothful because of the easiness of the way; for so was it with our fathers; for so was it prepared for them, that if they would look they might live; even so it is with us. The way is prepared, and if we will look we may live forever." (Alma 37:46)
I'm deeply grateful for the physical healing that is happening with Talitha. And tonight, I'm also thinking of all the spiritual healing that has been taking place over these last months. God really is a God of miracles and tender mercies.
My prayer tonight is that we may with a brightness of hope look to Christ and live in every way.
Wednesday, June 2, 2010
The good and bad of Benadryl
Talitha had a hard day especially in the morning.
She needed both platelet and red blood cell transfusions which wouldn't have been such a struggle except that Talitha fought going to sleep.
Let me explain. Because of common side effects of transfusions--some of which can be dangerous--they give Talitha medicine like Benadryl in advance of the transfusion(s) to ward off allergic reactions. Benadryl always makes Talitha tired. Most the time, she just falls asleep after receiving the medicine and things proceed smoothly. But once in a while, she fights the drowsiness. Then the feeling of being half in control / half out of control just makes her antsy and upset.
There's definitely an angel side to Talitha and a...well, um...how shall we say...not so angelic side that tends to show up when she's over-tired or is fighting the effects of Benadryl.
So, it was a bit of an everything-is-stepping-on-my-nerves kind of day. Guess that's what we get for thinking Talitha is almost done with treatment. It's been going on for "ages" but now suddenly can't get here fast enough.
I think everyone is done with hospital living and just wants to be home.
The highlight of the day for Talitha was her bath this afternoon. Make lots of bubbles and just have fun.
(I think she likes bath time so much now because it's her only ticket out of her quarantine room. The bathtub room is just a few doors down and across the hall. But hey, with an imagination like Tali's, it might as well be on a different planet.)
Last Wednesday in the hospital (?!)
Yay!
She needed both platelet and red blood cell transfusions which wouldn't have been such a struggle except that Talitha fought going to sleep.
Let me explain. Because of common side effects of transfusions--some of which can be dangerous--they give Talitha medicine like Benadryl in advance of the transfusion(s) to ward off allergic reactions. Benadryl always makes Talitha tired. Most the time, she just falls asleep after receiving the medicine and things proceed smoothly. But once in a while, she fights the drowsiness. Then the feeling of being half in control / half out of control just makes her antsy and upset.
There's definitely an angel side to Talitha and a...well, um...how shall we say...not so angelic side that tends to show up when she's over-tired or is fighting the effects of Benadryl.
So, it was a bit of an everything-is-stepping-on-my-nerves kind of day. Guess that's what we get for thinking Talitha is almost done with treatment. It's been going on for "ages" but now suddenly can't get here fast enough.
I think everyone is done with hospital living and just wants to be home.
The highlight of the day for Talitha was her bath this afternoon. Make lots of bubbles and just have fun.
(I think she likes bath time so much now because it's her only ticket out of her quarantine room. The bathtub room is just a few doors down and across the hall. But hey, with an imagination like Tali's, it might as well be on a different planet.)
Last Wednesday in the hospital (?!)
Yay!
Tuesday, June 1, 2010
No small miracle
There seems to be no end to the innovative things that can be done in a single hospital room.
Talitha explored the possibilities of establishing a new room within the room UNDER the crib but that was too stressful for her mom so that expedition was short lived.
The big thing today was sitting on the window sill. Tali sat there for the longest time watching birds, cars, and people from her 4th floor perch. Such enthusiasm as the world continues to unfold before her.
The closet doors in the room are covered with white-board material and Talitha spent a good while in front of those doors discovering how fun it is to color on the slick surface.
A while back, Tali started imitating the techs that come in and take her vitals and then write their findings with a pen on paper. She likes to ask for a pen and paper whenever a tech or doctor comes in the room which gets a few of them chuckling now and then.
Talitha insists we hold her hands so she can walk around the room frequently throughout the day. She hasn't regained her sense of balance yet and is very shaky and nervous with the walking thing. I think she remembers being able to walk and wants to get there again.
I'm glad she is interested in walking practice and initiates it so we don't have to make it a big deal.
At work, one of my friends kind of caught me off guard with an unusual question. He asked, "If you hadn't discovered the tumor, would Talitha still be alive?"
The sobering answer is "no".
The question didn't bother me, though it did get me to reflect for a few moments.
The reality that Talitha is still with us is no small miracle. And without Tali's intuitive mother, we wouldn't have ever asked my doctor brother the questions that led to specific inquiries at the Utah Valley Health Clinic that resulted in a tell-all MRI the next day on December 23.
How grateful we are for the last (nearly) six months with her that--but for the grace of God--we wouldn't have had.
Talitha explored the possibilities of establishing a new room within the room UNDER the crib but that was too stressful for her mom so that expedition was short lived.
The big thing today was sitting on the window sill. Tali sat there for the longest time watching birds, cars, and people from her 4th floor perch. Such enthusiasm as the world continues to unfold before her.
The closet doors in the room are covered with white-board material and Talitha spent a good while in front of those doors discovering how fun it is to color on the slick surface.
A while back, Tali started imitating the techs that come in and take her vitals and then write their findings with a pen on paper. She likes to ask for a pen and paper whenever a tech or doctor comes in the room which gets a few of them chuckling now and then.
Talitha insists we hold her hands so she can walk around the room frequently throughout the day. She hasn't regained her sense of balance yet and is very shaky and nervous with the walking thing. I think she remembers being able to walk and wants to get there again.
I'm glad she is interested in walking practice and initiates it so we don't have to make it a big deal.
At work, one of my friends kind of caught me off guard with an unusual question. He asked, "If you hadn't discovered the tumor, would Talitha still be alive?"
The sobering answer is "no".
The question didn't bother me, though it did get me to reflect for a few moments.
The reality that Talitha is still with us is no small miracle. And without Tali's intuitive mother, we wouldn't have ever asked my doctor brother the questions that led to specific inquiries at the Utah Valley Health Clinic that resulted in a tell-all MRI the next day on December 23.
How grateful we are for the last (nearly) six months with her that--but for the grace of God--we wouldn't have had.
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