We've heard the phrase "Endure it well" several times in the last week. Seems appropriate tonight as we will likely take Talitha to the hospital this week for induction cycle #2--the same treatment cycle she just had repeated all over again.
What will be different this time? Will the lessons be deeper just like when you re-read something worthwhile? Will we be as willing to press on as when we were more naive about the terrain? Will we be stronger since we've already "done it" once? Will it be harder to keep holding on or will our grasp be strengthened from the exercise?
Talitha is doing SO good! (in everything but drinking) The home health care nurse will come tomorrow to do a determining blood draw. We are confident her blood counts will be more than sufficient to allow for advancing to cycle #2.
So, we must press on with the fight.
Sunday, February 7, 2010
Saturday, February 6, 2010
Hospital Accessories
Talitha is enjoying being home almost as much as the rest of us are loving having her at home. In the picture we took of Talitha this evening (see above), you can see a few of the fashionable items we lovingly call Hospital Jewelry. You can accessorize most any hospital wear with plentiful options for feet, wrists, arms, chest, nose, head, etc...in the form of ID bracelets, IVs, oxygen absorption & heart monitors, blood pressure cuffs, central lines, NG (feeding) tubes, external head drains, and the like.
In the above photo, Talitha is modeling the ever popular double lumen Broviac catheter (central line) and the intubated Nasogastric (feeding) tube.
You can see the central line splits off to two portals through which IVs can be administered simultaneously without the need for lines inserted into and taped onto wrists. This central line was surgically installed on January 11th and will be permanent throughout her therapy. The chemo drugs are injected through these ports which empty near the heart where maximum blood flow quickly disperses the harsh substances that would be too much for and burn the smaller arteries in the arm. It is also through the central line that Audrey injects preventive antibiotics at home while Talitha's blood counts are too low to fight infection. In order to maintain the central lines, both portals must be flushed daily and then "locked" with hepron to avoid blood clot issues.
The Nasogastric tube (NG for short) is the line you see running from her left nostril and wrapping around to her back side. Clear tape is used on her cheek to hold the tube in place and to help prevent its accidental removal. There is probably a good 18 inches or more of tubing that you can't see in the picture. We usually coil and tape the excess to her shirt in back to help us avoid snagging and tangling. This tube is not permanent but is used when she is not getting enough to eat (or drink) on her own. (She's eating pretty good now...still not much luck with drinking.)
Though hard to see in the picture, Talitha's hair is very thin now. She still has some beautiful long strands in the front but most is now gone in the back and so her scar from the tumor removal in the back is always visable. She saw the red head band and asked Audrey to put it in her hair. Then Audrey asked her if she wanted to see in the mirror. She enthusiastically replied, "YEEEEAAAAHHHH!"
She pretty much lost her smile during the unexpected week back in the hospital. But as you can see she's feeling pretty good right now. Lot's of sleep and entertainment from her adoring siblings have combined to lift the corners of her mouth a bit. She even laughed today which just warms the heart.
We love our little girl!
Friday, February 5, 2010
Appetite
Talitha shakes a little when reaching for things on her tray while eating. I’m told this is due to her low blood counts and that as that improves, the shaking should go away. She’s not too interested in walking practice yet and that’s probably linked back to the same thing—blood fatigue.
The thing I noticed most today was her eating quite a bit more; enough so that we only fed her through the tube twice today. The tube feeding process at home is a bit different than at the hospital. We don’t have the fancy machines at home that regulate the flow. We just have to raise her feeding line up and then insert the tip of an oversized, open syringe into the feeding tube end and then pour the food liquids into the syringe and let gravity do its work. (Before feeding her through the tube, we have to listen through a stethoscope to her stomach while forcing air from a smaller syringe into the line to make sure the line is still in her stomach and not wandering off to other places in the body--like the lungs--that shouldn’t be fed that way.)
It’s getting better each time but Talitha can immediately feel the substance flowing to her stomach and so will complain and be very uncomfortable. He stomach shrunk quite a bit over the last week and it doesn’t take much for her to feel the stretch down there. It’s interesting to note that the more she went without food, the more she began losing the ability to receive food. In order to get her the nourishment she needs, we are having to stretch her receiving capacity—the stomach. And that makes her uncomfortable.
It's no secret that both our spirits and our bodies need nourishment to survive and thrive. Hunger can be very real to both. Cravings are common to both. Neglect of either brings a reduction in capacity and the eventual side effects of starvation. Overcoming malnourishment from under-consumption in either case usually involves an uncomfortable stretch or adjustment.
We’re trying to help Talitha stretch her stomach back to where she can receive all the physical nourishment she needs. We also sing with her, involve her with the daily family scripture reading when she’s home, and pray with her so that we aren’t neglecting the spiritual feeding and strengthening so vital for facing life’s challenges of any kind.
I’ve noticed with my older children that healthy appetites are built both spiritually and physically not by huge intakes just one day a week followed by days of nothing, but by smaller, adequate amounts consumed consistently and increased steadily over time.
The thing I noticed most today was her eating quite a bit more; enough so that we only fed her through the tube twice today. The tube feeding process at home is a bit different than at the hospital. We don’t have the fancy machines at home that regulate the flow. We just have to raise her feeding line up and then insert the tip of an oversized, open syringe into the feeding tube end and then pour the food liquids into the syringe and let gravity do its work. (Before feeding her through the tube, we have to listen through a stethoscope to her stomach while forcing air from a smaller syringe into the line to make sure the line is still in her stomach and not wandering off to other places in the body--like the lungs--that shouldn’t be fed that way.)
It’s getting better each time but Talitha can immediately feel the substance flowing to her stomach and so will complain and be very uncomfortable. He stomach shrunk quite a bit over the last week and it doesn’t take much for her to feel the stretch down there. It’s interesting to note that the more she went without food, the more she began losing the ability to receive food. In order to get her the nourishment she needs, we are having to stretch her receiving capacity—the stomach. And that makes her uncomfortable.
It's no secret that both our spirits and our bodies need nourishment to survive and thrive. Hunger can be very real to both. Cravings are common to both. Neglect of either brings a reduction in capacity and the eventual side effects of starvation. Overcoming malnourishment from under-consumption in either case usually involves an uncomfortable stretch or adjustment.
We’re trying to help Talitha stretch her stomach back to where she can receive all the physical nourishment she needs. We also sing with her, involve her with the daily family scripture reading when she’s home, and pray with her so that we aren’t neglecting the spiritual feeding and strengthening so vital for facing life’s challenges of any kind.
I’ve noticed with my older children that healthy appetites are built both spiritually and physically not by huge intakes just one day a week followed by days of nothing, but by smaller, adequate amounts consumed consistently and increased steadily over time.
Thursday, February 4, 2010
Yay! Tali's home!
Talitha made it home. Just barely. Audrey is exhausted from a day of ups and downs:
Up: white blood cell count is up to 500 (Tali gets to go home!)
Down: Tali's central line broke.
Up: They were able to repair the line.
Down: before they repaired it, they had to insert a new IV line in Talitha's arm for the antibiotics.
Up: They needed the separate IV line anyway for the follow-up kidney test.
Down: The repaired central lines both clogged (Tali has to stay at the hospital.)
Up: After 4 hours of painstaking effort, they unclogged the central line (Tali got to come home!)
Down: Tali cried for a good chunk of the way home and since Audrey was alone with her and driving, she couldn't do anything about it...except enthusiastically sing and recite the story of Goldilocks and the 3 bears all while pretending she wasn't completely annoyed by the rush-hour traffic that helped ensure the trip would stretch out even longer.
Up: Talitha's home!
Down: She only eats a little and won't drink
Up: She's home!
Down: The home-help nurse came really late tonight and we had to keep Talitha up so the nurse could teach us how to inject the on-going antibiotics and how to feed Talitha through her nose-to-stomach tube.
Up: Talitha is home and sleeping in her own bed!
It's tough to maintain credibility and trust with someone so small when you are constantly hyping her up to be brave "one more time" and then there's one more unexpected thing after another. And when the central line is broken or clogged they have to do painful pokes for the standard blood draws...just one more thing we aren't well equiped to explain to our 17 month old.
So the question is, do you just assume the worst or do you keep hoping for the best amidst the piling on of unplanned hospital days and not knowing what's coming next?
Maybe the answer is to just "... keep your arms and legs inside at all times and enjoy the ride!"
Up: white blood cell count is up to 500 (Tali gets to go home!)
Down: Tali's central line broke.
Up: They were able to repair the line.
Down: before they repaired it, they had to insert a new IV line in Talitha's arm for the antibiotics.
Up: They needed the separate IV line anyway for the follow-up kidney test.
Down: The repaired central lines both clogged (Tali has to stay at the hospital.)
Up: After 4 hours of painstaking effort, they unclogged the central line (Tali got to come home!)
Down: Tali cried for a good chunk of the way home and since Audrey was alone with her and driving, she couldn't do anything about it...except enthusiastically sing and recite the story of Goldilocks and the 3 bears all while pretending she wasn't completely annoyed by the rush-hour traffic that helped ensure the trip would stretch out even longer.
Up: Talitha's home!
Down: She only eats a little and won't drink
Up: She's home!
Down: The home-help nurse came really late tonight and we had to keep Talitha up so the nurse could teach us how to inject the on-going antibiotics and how to feed Talitha through her nose-to-stomach tube.
Up: Talitha is home and sleeping in her own bed!
It's tough to maintain credibility and trust with someone so small when you are constantly hyping her up to be brave "one more time" and then there's one more unexpected thing after another. And when the central line is broken or clogged they have to do painful pokes for the standard blood draws...just one more thing we aren't well equiped to explain to our 17 month old.
So the question is, do you just assume the worst or do you keep hoping for the best amidst the piling on of unplanned hospital days and not knowing what's coming next?
Maybe the answer is to just "... keep your arms and legs inside at all times and enjoy the ride!"
Wednesday, February 3, 2010
Fighting the Bad Guys
It's not uncommon for men and women to lose weight and thereby reduce their pant size or dress size--usually a desireable event--but I've never known a baby to lose a diaper size...until now.
Talitha is trying to eat a little each day but it's not keeping pace so the feeding tube gets to stay around for a while yet.
Encouragingly, Talitha's white blood cell count (finally) showed an increase in this morning's blood draw. If the increase continues tomorrow morning they say chances are good Talitha will come home for a few days.
The count this morning was 200; when it gets back up to 1,000 she gets to start the whole process over again for induction cycle #2. For the sake of perspective, when she left the hospital on January 24th after a week of chemotherapy, her count was at 2,700; the low end of the "normal" spectrum for white blood cell count in a child is 6,000.
It seems harsh to hit her with the chemo guns again so soon, but if they don't, it gives the bad guys (cancer cells) time to regroup and dig in with greater resistance. You kind of have to keep the bad guys on the run and confused or they wise up and figure out new ways to get you.
In many ways it's like fighting evil. If the evil can find a way to work its way into your life without you seeing it for what it really is, it can wreak havoc on you. But identification is only the first step. Once you see it for what it is, you have a choice: (1) ignore it and pretend it's not there cause it doesn't seem so bad and nothing's really that wrong, or (2) aggressively fight it till it's gone...REALLY gone. (And that takes time and sometimes it's a repetative process that can hurt.)
We've had to face the harsh reality that even one un-killed cancer cell left over after Talitha's treatment spells disaster. That's why the oncologists aren't messing around.
I'm starting to see a spiritual corollary...and I pray for help to understand and apply it.
Talitha is trying to eat a little each day but it's not keeping pace so the feeding tube gets to stay around for a while yet.
Encouragingly, Talitha's white blood cell count (finally) showed an increase in this morning's blood draw. If the increase continues tomorrow morning they say chances are good Talitha will come home for a few days.
The count this morning was 200; when it gets back up to 1,000 she gets to start the whole process over again for induction cycle #2. For the sake of perspective, when she left the hospital on January 24th after a week of chemotherapy, her count was at 2,700; the low end of the "normal" spectrum for white blood cell count in a child is 6,000.
It seems harsh to hit her with the chemo guns again so soon, but if they don't, it gives the bad guys (cancer cells) time to regroup and dig in with greater resistance. You kind of have to keep the bad guys on the run and confused or they wise up and figure out new ways to get you.
In many ways it's like fighting evil. If the evil can find a way to work its way into your life without you seeing it for what it really is, it can wreak havoc on you. But identification is only the first step. Once you see it for what it is, you have a choice: (1) ignore it and pretend it's not there cause it doesn't seem so bad and nothing's really that wrong, or (2) aggressively fight it till it's gone...REALLY gone. (And that takes time and sometimes it's a repetative process that can hurt.)
We've had to face the harsh reality that even one un-killed cancer cell left over after Talitha's treatment spells disaster. That's why the oncologists aren't messing around.
I'm starting to see a spiritual corollary...and I pray for help to understand and apply it.
Tuesday, February 2, 2010
Still no white blood cells
I really didn't understand that the week of chemo injection--hard as it was--would be followed by even more challenging after effects, most notably the literal exhaustion of the blood. When they told us the blood counts could continue to drop for 7 to 10 days AFTER she concluded the injections, it didn't make any sense to me so I dismissed it, classifying it in that ever popular happens-to-other-kids-not-mine folder.
Talitha has lost enough weight since last Thursday that they inserted a feeding tube early this evening. Not exactly what I was hoping for (and I'm not even the one gagging on it going down).
Angels make it possible to endure when tediousness sets in. Among the many things I've been invited to reconsider since December 23 is the notion that angels primarily come to our aid from the other side of the veil that separates heaven and earth. I believe now that my ratios may have been lopsided in the wrong direction as I'm seeing an inordinate amount of angel activity all around us physically. From dinners showing up as if someone knew exactly what night it was needed to emails of encouragement with precise course material with answers to help with the test(s) of the day...I'm starting to see why prophets of old would say things like "all things denote there is a God."
You angels have such ordinary names, faces, homes, and dress, who'd have guessed. No wings, harps, or cloud hopping...just kind, caring, spirit-heeding normal people trying to keep up with your own challenges and cares but somehow never too busy to lift the hands that may be a bit droopy whether in your immediate geographic or wider virtual proximity.
You angels are the heaven-sent white blood cells of my faith that boost my immunity against the diseases of discouragement, loneliness, anger, and despair. How I pray God's choicest blessings will be with you to uphold you and your loved ones that you too may have an abundance of His spirit to lift and guide you always.
Talitha has lost enough weight since last Thursday that they inserted a feeding tube early this evening. Not exactly what I was hoping for (and I'm not even the one gagging on it going down).
Angels make it possible to endure when tediousness sets in. Among the many things I've been invited to reconsider since December 23 is the notion that angels primarily come to our aid from the other side of the veil that separates heaven and earth. I believe now that my ratios may have been lopsided in the wrong direction as I'm seeing an inordinate amount of angel activity all around us physically. From dinners showing up as if someone knew exactly what night it was needed to emails of encouragement with precise course material with answers to help with the test(s) of the day...I'm starting to see why prophets of old would say things like "all things denote there is a God."
You angels have such ordinary names, faces, homes, and dress, who'd have guessed. No wings, harps, or cloud hopping...just kind, caring, spirit-heeding normal people trying to keep up with your own challenges and cares but somehow never too busy to lift the hands that may be a bit droopy whether in your immediate geographic or wider virtual proximity.
You angels are the heaven-sent white blood cells of my faith that boost my immunity against the diseases of discouragement, loneliness, anger, and despair. How I pray God's choicest blessings will be with you to uphold you and your loved ones that you too may have an abundance of His spirit to lift and guide you always.
Monday, February 1, 2010
You Can't Make Lemonade Without Lemons
I don't always like it when I hear my children repeat things back to me that they've heard me say. They seem to ignore some of what I'd like them to remember while paying strict attention to the stuff I don't even know they're listening to.
Then there's the times they rearrange the words they've heard Audrey or me say. Sometimes the misquotes are cute and funny. Sometimes they're profound.
On one occasion, my daughter Afton was trying to repeat the common saying that "when life hands you lemons, make lemonade." Only what came out of her mouth was "you can't make lemonade without lemons."
Audrey and I have often reflected on that. It helps us smile and relax just a bit more when the going is rough. No matter what the trial is, the common thread seems to be that if we can somehow keep our wits about us we'll often notice that some of the greatest learning, growth, and breakthroughs in our development happen as a result of the tough stuff.
The trick is trusting that that will be the case even before the batch of lemonade is finished. Then you can face the prospects of the situation with a bit more enthusiasm and a lot less dread.
I heard something tonight that seems to apply: "feeding your faith will starve your fear."
I like that.
We actually got a sip of lemonade today. Talitha had her second sedated hearing test and the results actually IMPROVED over her first test. (Boy, was I relieved and excited.) Her first test showed a problem with the low sound registry and little to no movement of the eardrums. Now, the fluid that was restricting the eardrum movement has begun to dissapate and her low sound receivers are working again. But of most interest--since the chemo she's receiving can impact her mid to high note receptors--Talitha's mid to high range is still in place and has not been diminished from the first induction round!
Thank you--multiplied a thousand times--for your prayers and faith on Tali's behalf. The results of your prayers really are tangible. I hope you are feeling joy. We are.
My prayer is that God will grant each of you great peace and happiness and that he will multiply your joy. What a blessing to know He lives and loves each one of us.
Then there's the times they rearrange the words they've heard Audrey or me say. Sometimes the misquotes are cute and funny. Sometimes they're profound.
On one occasion, my daughter Afton was trying to repeat the common saying that "when life hands you lemons, make lemonade." Only what came out of her mouth was "you can't make lemonade without lemons."
Audrey and I have often reflected on that. It helps us smile and relax just a bit more when the going is rough. No matter what the trial is, the common thread seems to be that if we can somehow keep our wits about us we'll often notice that some of the greatest learning, growth, and breakthroughs in our development happen as a result of the tough stuff.
The trick is trusting that that will be the case even before the batch of lemonade is finished. Then you can face the prospects of the situation with a bit more enthusiasm and a lot less dread.
I heard something tonight that seems to apply: "feeding your faith will starve your fear."
I like that.
We actually got a sip of lemonade today. Talitha had her second sedated hearing test and the results actually IMPROVED over her first test. (Boy, was I relieved and excited.) Her first test showed a problem with the low sound registry and little to no movement of the eardrums. Now, the fluid that was restricting the eardrum movement has begun to dissapate and her low sound receivers are working again. But of most interest--since the chemo she's receiving can impact her mid to high note receptors--Talitha's mid to high range is still in place and has not been diminished from the first induction round!
Thank you--multiplied a thousand times--for your prayers and faith on Tali's behalf. The results of your prayers really are tangible. I hope you are feeling joy. We are.
My prayer is that God will grant each of you great peace and happiness and that he will multiply your joy. What a blessing to know He lives and loves each one of us.
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