Specifically ... there don't seem to be any. You've got your "Make a Wish" foundation and "Sunshine Kids" and such, but they all require the patient to be at least 3. Which I can understand, they want to help the kids who can appreciate it. But babies ... and the families of babies with cancer ... have some different and specific needs.
So ... if I had the money to start a foundation for babies with cancer, what would it do?
Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...
What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.
Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?
OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.
Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.
Monday, March 06, 2006
Phooey on Statistics
Bummer.
Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.
So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.
The statistics, overall, for Wilms' look great -- 90+% survival.
However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.
So, 90% survival ... means 1 in 10 won't survive.
1/10.
1/10,000
I won't keep going with the math.
Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.
So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.
The statistics, overall, for Wilms' look great -- 90+% survival.
However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.
So, 90% survival ... means 1 in 10 won't survive.
1/10.
1/10,000
I won't keep going with the math.
Saturday, March 04, 2006
Classify these "Good Times"
I wonder how we will look back on this time.
Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.
But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)
Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.
As Willie Nelson sang, "Classify these good times."
Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.
But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)
Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.
As Willie Nelson sang, "Classify these good times."
Wednesday, March 01, 2006
Tomorrow, early
Ugh. Gotta get up at 5:30, in order to make it to the hospital by 7:30 for Little Warrior to get a CT Scan at ... 1:00??? Grr.
This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.
This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.
Sunday, February 26, 2006
Dis Not Plan Me Have In Mind, Floyd
http://www.comics.com/comics/pearls/archive/pearls-20060226.html
(February 26 Pearls Before Swine)
Oh. My. God. I love this. I have looked at it about 50 times today, and it's still making me laugh.
God muss have beeg plan foh us, Floyd!
Bwahahahahaha.
(February 26 Pearls Before Swine)
Oh. My. God. I love this. I have looked at it about 50 times today, and it's still making me laugh.
God muss have beeg plan foh us, Floyd!
Bwahahahahaha.
Wednesday, February 22, 2006
Keep your "miracle drug" of choice to yourself
Tip to the world: we all have a "miracle drug" that we believe in. But just because you believe in yours, do not try and convince me it is the One and Only Miracle Cure. Your cure may be:
* The Raw Food Diet
* Positive Thinking
* Jesus
... I'm not interested.
Prayers? Prayers, I love. Whether you pray to Allah, Jesus, Kali, of The Great Spirit of Mankind, I thank you for your prayers. I appreciate your prayers and I believe that there is a significant power in prayer that we don't understand.
But do not try and tell me to just hand my problems over to God and He will deliver. (I'm curious ... when people are given this platitude, and then the worst happens, do they then return to the platitude-giver and say, "Dude, what's up with what you promised?" Says my husband: "If they did, they'd just be given another platitude like 'Well, God has a plan.'")
And in terms of the "drink juice" or "eat raw food" or "don't give her chemo, it's poison" people ... get a life. Other than one bite of home-cooked sweet potatoes at Thanksgiving, this baby has had nothing but breastmilk, straight from the source. And chemotherapy is the reason why so many children now survive childhood cancer.
Pray for me. But do not tell me how to pray.
Or eat.
* The Raw Food Diet
* Positive Thinking
* Jesus
... I'm not interested.
Prayers? Prayers, I love. Whether you pray to Allah, Jesus, Kali, of The Great Spirit of Mankind, I thank you for your prayers. I appreciate your prayers and I believe that there is a significant power in prayer that we don't understand.
But do not try and tell me to just hand my problems over to God and He will deliver. (I'm curious ... when people are given this platitude, and then the worst happens, do they then return to the platitude-giver and say, "Dude, what's up with what you promised?" Says my husband: "If they did, they'd just be given another platitude like 'Well, God has a plan.'")
And in terms of the "drink juice" or "eat raw food" or "don't give her chemo, it's poison" people ... get a life. Other than one bite of home-cooked sweet potatoes at Thanksgiving, this baby has had nothing but breastmilk, straight from the source. And chemotherapy is the reason why so many children now survive childhood cancer.
Pray for me. But do not tell me how to pray.
Or eat.
Tuesday, February 21, 2006
Whine and Redemption
"A range of acting-out behavior such as tantrums, or acting-in behavior, like depression, should be expected from an ill child. Help them to develop ways to cope and express their feelings." (from a helpful website)
Guess what. That applies to the parents, too.
First ... allow me to simultaneously act out and express my feelings.
Waaaah, waaaah, waaaaah! she whines.
So, in addition to taking care of a baby with cancer, a baby who can't tell me what hurts, so I have to try and deduce it by reading about older children and their complaints when on this protocol, I have to also make sure that my three older children are all having their needs met, both physical, emotional and mental, making sure that each of them feels special and valued and heard, AND I need to make sure to encourage my partner to express his feelings, no mean feat, since he is the quiet type, AND I need to be sure and eat healthfully because I must keep myself healthy, AND since I'm breastfeeding and alcohol can interfere with chemo I can't even have a glass of wine in the evening AND I need to comfort others -- friends, relatives and acquaintances -- who are affected by this, AND I need to read up on all the recent research to make sure our protocol is the best, AND OH YEAH, I need to sterilize all the babies toys and run interference between her and her siblings who really want to touch her, hold her, let her put her fingers in their mouths AND I need to make the house a sterile clean environment for the patient AND don't forget, "try to keep life as normal as possible to limit the disruption this will cause to your family."
/Rant
Okay. Breathe. Breathe. Breathe. Think of the blessings ...
...Of which there are many. I am so incredibly blessed in all of this in so many ways.
My parents, septagenarians both, closed up their house two states away, dragged their RV down here and there they are, my beck-and-call-parents, ready to drop everything and come over for appointments, entry into the hospital, even to pick up groceries.
Our wonderful siblings, the aunts and uncle to Little Warrior, who call, come down, make flyers, and play with their nephew and nieces.
An incredible little church and our covenant groups, who have made sure we never feel alone. Trips to the hospital, casseroles out the yin-yang, running a blood drive, prayers and hope.
We are blessed. We are blessed. We are blessed.
Guess what. That applies to the parents, too.
First ... allow me to simultaneously act out and express my feelings.
Waaaah, waaaah, waaaaah! she whines.
So, in addition to taking care of a baby with cancer, a baby who can't tell me what hurts, so I have to try and deduce it by reading about older children and their complaints when on this protocol, I have to also make sure that my three older children are all having their needs met, both physical, emotional and mental, making sure that each of them feels special and valued and heard, AND I need to make sure to encourage my partner to express his feelings, no mean feat, since he is the quiet type, AND I need to be sure and eat healthfully because I must keep myself healthy, AND since I'm breastfeeding and alcohol can interfere with chemo I can't even have a glass of wine in the evening AND I need to comfort others -- friends, relatives and acquaintances -- who are affected by this, AND I need to read up on all the recent research to make sure our protocol is the best, AND OH YEAH, I need to sterilize all the babies toys and run interference between her and her siblings who really want to touch her, hold her, let her put her fingers in their mouths AND I need to make the house a sterile clean environment for the patient AND don't forget, "try to keep life as normal as possible to limit the disruption this will cause to your family."
/Rant
Okay. Breathe. Breathe. Breathe. Think of the blessings ...
...Of which there are many. I am so incredibly blessed in all of this in so many ways.
My parents, septagenarians both, closed up their house two states away, dragged their RV down here and there they are, my beck-and-call-parents, ready to drop everything and come over for appointments, entry into the hospital, even to pick up groceries.
Our wonderful siblings, the aunts and uncle to Little Warrior, who call, come down, make flyers, and play with their nephew and nieces.
An incredible little church and our covenant groups, who have made sure we never feel alone. Trips to the hospital, casseroles out the yin-yang, running a blood drive, prayers and hope.
We are blessed. We are blessed. We are blessed.
Monday, February 20, 2006
Being a UU and a Parent of a Cancer Patient
So, does it mean anything, being both a Unitarian Universalist and a parent of a cancer patient?
In some ways, no. You go through the same Kubler-Ross levels of grief. You deny, you rage, you cry, you bargain, you accept. You wish it could be YOU with the cancer, not your innocent little baby. (As if cancer is only handed out to those who have done bad.) You hold that baby close.
In some ways, yes. Forgive the wide generalizations here ... there are Christians, Muslims, Buddhists, etc. that all question and doubt in the same ways UU's do. As a UU, I consider it to be a responsibility to my religion that I question deity and philosophy. Perhaps this is a cushion, at times like this. When someone says to me, "You have to realize, this is all part of God's plan," I don't feel a need to rage at any type of "His eye is on the sparrow" deity, as perhaps one who has had total trust in God might. I can simply say, "Pbbblt."
And during the day, I can acknowledge the sense I have that such things are random. To my mind, when Job asks God why all the travails were visited upon him and God replies, "Because I'm God," I don't see it as any type of mystical answer. I think that it is a matter-of-fact answer to why bad things happen. They just do. "Because I'm God."
Just random. I believe that things are interconnected, but I believe that there are some things that happen randomly ... much like cancer itself. You have your healthy, working body, everything working in rhythm. But sometimes, things go screwy. Cells begin multiplying rapidly, out of rhythym, out of rhyme. Random.
But at night ...
But at night, as I curl my body around her sleeping form, looking at that sweet little face, tracing the incision that goes from one side of her to the other ... all I say is, Please.
Please, God.
In some ways, no. You go through the same Kubler-Ross levels of grief. You deny, you rage, you cry, you bargain, you accept. You wish it could be YOU with the cancer, not your innocent little baby. (As if cancer is only handed out to those who have done bad.) You hold that baby close.
In some ways, yes. Forgive the wide generalizations here ... there are Christians, Muslims, Buddhists, etc. that all question and doubt in the same ways UU's do. As a UU, I consider it to be a responsibility to my religion that I question deity and philosophy. Perhaps this is a cushion, at times like this. When someone says to me, "You have to realize, this is all part of God's plan," I don't feel a need to rage at any type of "His eye is on the sparrow" deity, as perhaps one who has had total trust in God might. I can simply say, "Pbbblt."
And during the day, I can acknowledge the sense I have that such things are random. To my mind, when Job asks God why all the travails were visited upon him and God replies, "Because I'm God," I don't see it as any type of mystical answer. I think that it is a matter-of-fact answer to why bad things happen. They just do. "Because I'm God."
Just random. I believe that things are interconnected, but I believe that there are some things that happen randomly ... much like cancer itself. You have your healthy, working body, everything working in rhythm. But sometimes, things go screwy. Cells begin multiplying rapidly, out of rhythym, out of rhyme. Random.
But at night ...
But at night, as I curl my body around her sleeping form, looking at that sweet little face, tracing the incision that goes from one side of her to the other ... all I say is, Please.
Please, God.
Sunday, February 19, 2006
I am Mr. Toad
I am, a bit. Mr. Toad. I admit it.
You remember Mr. Toad, from Wind in the Willows. He'd get into a new craze -- for instance, when he got a motorcar -- and he had to get the outfit to match. Goggles, car suit, etc.
I've done that. When I was on the fencing team, I was so thrilled the Christmas my parents bought me my own jacket. Pregnant, I couldn't WAIT to get in maternity clothes. After the baby was born, there I was in my nursing tops. I'm a Unitarian Universalist and not only do I wear UU t-shirts and jewelry, I even designed a shirt. And when U.T. were the champions this year, you know I was wearing my burnt orange the next day.
But now ... there's just no uniform, no costume, no t-shirt that goes with this.
I feel like there is. I managed to leave everyone today and go to Target all by myself. I felt like I was wearing a big, heavy sandwich board: "Mother of a Baby with Cancer." No one else could see the board, of course.
But it weighed me down.
You remember Mr. Toad, from Wind in the Willows. He'd get into a new craze -- for instance, when he got a motorcar -- and he had to get the outfit to match. Goggles, car suit, etc.
I've done that. When I was on the fencing team, I was so thrilled the Christmas my parents bought me my own jacket. Pregnant, I couldn't WAIT to get in maternity clothes. After the baby was born, there I was in my nursing tops. I'm a Unitarian Universalist and not only do I wear UU t-shirts and jewelry, I even designed a shirt. And when U.T. were the champions this year, you know I was wearing my burnt orange the next day.
But now ... there's just no uniform, no costume, no t-shirt that goes with this.
I feel like there is. I managed to leave everyone today and go to Target all by myself. I felt like I was wearing a big, heavy sandwich board: "Mother of a Baby with Cancer." No one else could see the board, of course.
But it weighed me down.
Thursday, February 16, 2006
Liquid diamonds
Big difference between a cancer patient and a cancer patient's mama? I LOVE chemo day. Little Warrior gets it weekly: every week, Vincristine, and every three weeks, Vincristine + Dactinomycin.
I love chemotherapy. It is liquid diamonds to me, going in and vanquishing the tumors, causing all those cells to POOF!
The long drive to the medical center, the hours of waiting ... WAIT when you get there, then WAIT in the infusion area, then WAIT to see the doctor, then WAIT for the chemo ... no problem. Fussy baby? Well, I'll just pop her in the sling strapped to my chest and we'll walk around and around and around the pediatric oncology area. Each step gets us closer to time for chemo and each drop of chemo gets us closer to her being well.
I love chemo day.
I love chemotherapy. It is liquid diamonds to me, going in and vanquishing the tumors, causing all those cells to POOF!
The long drive to the medical center, the hours of waiting ... WAIT when you get there, then WAIT in the infusion area, then WAIT to see the doctor, then WAIT for the chemo ... no problem. Fussy baby? Well, I'll just pop her in the sling strapped to my chest and we'll walk around and around and around the pediatric oncology area. Each step gets us closer to time for chemo and each drop of chemo gets us closer to her being well.
I love chemo day.
Wednesday, February 15, 2006
Okay, now THAT'S funny
Apparently the worship chair for our church was holding the March 5 Sunday open for me. Before All Of This began, I was scheduled to give a sermon.
Topic?
It was to be a humor service.
Topic?
It was to be a humor service.
Happy 1/2 Price Chocolate Day!
Hey, we'll take our celebrations where we may. The Husband hit Godiva for 1/2 price Valentine's chocolate. He called me, asking my opinion about his selection. "We still have some left from Christmas," I told him. "A small box is enough." "Yeah," said he, "it's not that long til Mother's Day."
Mother's Day!
It seems a million years from now. I have no idea what my world will be like by Mother's Day. By then, Little Warrior will probably have had her surgery, perhaps be in post-op chemo. What will our home be like, come Mother's Day?
Right now, things are just ... unsettled. I haven't yet settled in to having a "normal life" some time, yet always ready to drop everything and go back in the hospital. And then there's the weekly chemo treatments.
But Little Warrior seems so normal. She laughs, she plays. She hasn't lost her hair yet. She has good color. So, we somewhat go about our day, stopping occasionally to take blood pressure, or hook up her iv antibiotics, or take her captropril.
I've had the weird situation of having do "de-reassure" people. Yes, I'm making up a word. Here's the situation: word somehow got out that she had "turned a corner." Whatever that means. A neighbor stopped by yesterday to check on us. When I said something about going for chemo weekly, she stopped me. "But I thought everything was all over?" No, I told her, we're actually just at the start of the process.
The whole thing is just weird, weird, weird. I occasionally tell myself "don't be overdramatic." Then I have to remind myself, "you're not being overdramatic. Your baby has cancer. It's real. It's happening."
So, in summation, we are in a period of adjustment. Explaining to the children that when we're here, we're here, and the normal rule apply. Trying to stay kept up on laundry and bills. Figuring out work-arounds to things like the fact that I can't go to the grocery store anymore.
Tomorrow is "double chemo" day. Rah-rah.
Mother's Day!
It seems a million years from now. I have no idea what my world will be like by Mother's Day. By then, Little Warrior will probably have had her surgery, perhaps be in post-op chemo. What will our home be like, come Mother's Day?
Right now, things are just ... unsettled. I haven't yet settled in to having a "normal life" some time, yet always ready to drop everything and go back in the hospital. And then there's the weekly chemo treatments.
But Little Warrior seems so normal. She laughs, she plays. She hasn't lost her hair yet. She has good color. So, we somewhat go about our day, stopping occasionally to take blood pressure, or hook up her iv antibiotics, or take her captropril.
I've had the weird situation of having do "de-reassure" people. Yes, I'm making up a word. Here's the situation: word somehow got out that she had "turned a corner." Whatever that means. A neighbor stopped by yesterday to check on us. When I said something about going for chemo weekly, she stopped me. "But I thought everything was all over?" No, I told her, we're actually just at the start of the process.
The whole thing is just weird, weird, weird. I occasionally tell myself "don't be overdramatic." Then I have to remind myself, "you're not being overdramatic. Your baby has cancer. It's real. It's happening."
So, in summation, we are in a period of adjustment. Explaining to the children that when we're here, we're here, and the normal rule apply. Trying to stay kept up on laundry and bills. Figuring out work-arounds to things like the fact that I can't go to the grocery store anymore.
Tomorrow is "double chemo" day. Rah-rah.
Tuesday, February 07, 2006
Back in the saddle ... er, hospital ... again
Well, after 5 glorious days of being at home -- I didn't know they were glorious at the time, but now I know to cherish every single day home -- we had to come back to the hospital as Little Warrior got an infection. Because the chemo kills good white blood cells, as well as the bad cancer cells, if you get an infection, you're in the hospital for iv antibiotics and "keeping an eye on."
It's not too bad. She's on the iv, but no monitors, other than the normal every 4 hours vital check. A coupla times a day, I pop her in the sling, we unplug the iv pole and take it for a walk around the pediatric oncology floor. And around. And around. And around.
So, I guess this isn't going to be a cake walk. I guess cancer rarely is.
A couple of people have told me things like, "well, when this is all over, it will help you, when you become a minister." (This has always been said in a sensitive way, after profuse preambles of "you'd never want this ...")
I guess that could be true. I don't know. It seems miles and miles, years and years away. I'm just focused on the task at hand. And I'm not entirely sure that this will better me in any way. It quite possibly will make me bitter, not better.
And it all seems weird, anyway, the idea that this torture being done to my daughter would enhance me in any aspect. I mean, how self-serving is that?
Got a reminder, in the midst of all this, of how lucky we are. REALLY lucky, not "lucky to get one kind of cancer over another." We went to the ER Sunday night. They let us go home, about 2 in the morning. We were blocked when we came upon a huge car wreck on the freeway.
Just read the newspaper. Head-on collision, someone going the wrong direction. 3 fatalities. 15 minutes earlier, and chemo might have been moot. For all three of us.
Dayum lucky.
It's not too bad. She's on the iv, but no monitors, other than the normal every 4 hours vital check. A coupla times a day, I pop her in the sling, we unplug the iv pole and take it for a walk around the pediatric oncology floor. And around. And around. And around.
So, I guess this isn't going to be a cake walk. I guess cancer rarely is.
A couple of people have told me things like, "well, when this is all over, it will help you, when you become a minister." (This has always been said in a sensitive way, after profuse preambles of "you'd never want this ...")
I guess that could be true. I don't know. It seems miles and miles, years and years away. I'm just focused on the task at hand. And I'm not entirely sure that this will better me in any way. It quite possibly will make me bitter, not better.
And it all seems weird, anyway, the idea that this torture being done to my daughter would enhance me in any aspect. I mean, how self-serving is that?
Got a reminder, in the midst of all this, of how lucky we are. REALLY lucky, not "lucky to get one kind of cancer over another." We went to the ER Sunday night. They let us go home, about 2 in the morning. We were blocked when we came upon a huge car wreck on the freeway.
Just read the newspaper. Head-on collision, someone going the wrong direction. 3 fatalities. 15 minutes earlier, and chemo might have been moot. For all three of us.
Dayum lucky.
Saturday, February 04, 2006
Obladi, Life Goes On
"Obladi, oblada, life goes on, bra ..."
Even with cancer.
We are back home. Little Warrior had her second course of chemo last Thursday. She's throwing up about twice a day (and the doctors tell me that in babies, chemo doesn't cause nausea. Ha.) and her skin is a little dry, but so far, so good. Now that we're home, she has actually laughed at her siblings, done some smiling, and life is somewhat back to normal. I mean, other than the fact that we're taking her temp and blood pressure constantly, I'm wearing a watch that beeps at me every 8 hours for her blood pressure medication, the children aren't allowed to touch her, we're not allowed to go to the store or church ...
Well, other than THAT, Mrs. Lincoln ...
But life does go on. The 3 year old has a stomach bug, so we're trying to keep the two of them separate. But last night, we had a good dinner, all watched a DVD together, then karaoke in the living room.
Our living angels have been swirling around us, bringing us casseroles and Teletubbies DVDs, chocolate and company. It is amazing how important a card in the mail is -- it symbolizes a prayer, a moment in time where the person purchased it, signed it, addressed it and mailed it -- thinking of us while doing so, it's a tangible reminder of the energy being sent our way. I have never been that much of a card-sender; this has changed that.
We go to the children's hospital for chemo. There's an outpatient clinic with an entire floor devoted to pediatric oncology. You would think it would be depressing, a floor filled with children fighting cancer.
It's not! They've done such a terrific job. It's open and airy, and all about kids. There's toys, wagons, tvs, special lounges. They have a process you go through every time, so you used to what is going to happen. There's child life specialists on hand to help with distracting children or talking to siblings. Everywhere you go, there's someone saying, "what an adorable baby!" The vibe there is bright and happy.
"...la, la, la, how life goes on."
Even with cancer.
We are back home. Little Warrior had her second course of chemo last Thursday. She's throwing up about twice a day (and the doctors tell me that in babies, chemo doesn't cause nausea. Ha.) and her skin is a little dry, but so far, so good. Now that we're home, she has actually laughed at her siblings, done some smiling, and life is somewhat back to normal. I mean, other than the fact that we're taking her temp and blood pressure constantly, I'm wearing a watch that beeps at me every 8 hours for her blood pressure medication, the children aren't allowed to touch her, we're not allowed to go to the store or church ...
Well, other than THAT, Mrs. Lincoln ...
But life does go on. The 3 year old has a stomach bug, so we're trying to keep the two of them separate. But last night, we had a good dinner, all watched a DVD together, then karaoke in the living room.
Our living angels have been swirling around us, bringing us casseroles and Teletubbies DVDs, chocolate and company. It is amazing how important a card in the mail is -- it symbolizes a prayer, a moment in time where the person purchased it, signed it, addressed it and mailed it -- thinking of us while doing so, it's a tangible reminder of the energy being sent our way. I have never been that much of a card-sender; this has changed that.
We go to the children's hospital for chemo. There's an outpatient clinic with an entire floor devoted to pediatric oncology. You would think it would be depressing, a floor filled with children fighting cancer.
It's not! They've done such a terrific job. It's open and airy, and all about kids. There's toys, wagons, tvs, special lounges. They have a process you go through every time, so you used to what is going to happen. There's child life specialists on hand to help with distracting children or talking to siblings. Everywhere you go, there's someone saying, "what an adorable baby!" The vibe there is bright and happy.
"...la, la, la, how life goes on."
Friday, January 27, 2006
Hard battles, hoping for an easy war
NOTHING is easy. She's still got the canula (thingie in the nose), still has the Foley catheter, still hooked up to all kinds of monitoring devices, ivs, etc. After she tolerated the pedialyte okay, we were given the go ahead to nurse. Now, she wouldn't take the pedialyte in a bottle because she's been exclusively breastfed. Sorry, I didn't train her to a bottle anticipating that she would get cancer!
"Nobody expects the Spanish Inquisition."
Anyway, with a syringe, we got it down her. At midnight, we were free to nurse. Well, nursing a baby with a canula in her nose just AIN'T gonna happen, or at least, not this baby. Took it out. Tried for an hour to nurse. Not gonna happen, not after the whole canula incident. Okay, so bundle up all the wires, hoses and tubes and get her back in bed.
This morning, we were able to nurse (again, each time we have to go through a 3 person ordeal of moving wires, hoses and tubes and HER) ... but she threw it up. Probably because that's what she does at least once a day, having nothing to do with the nursing per se.
Tried again later. Did fine, except we had to give her blood pressure medication, which meant she threw up again. Not an easy one for taking any medicine by mouth, even before all of this. Oh! And mixed in all of this, The Husband is trying to hold an oxygen mask close enough to her that she'll breathe some of it, but not so close that she fights like a wildcat to get it away. Hmmm. Back when we were in college, I don't think that that is quite the way he envisioned getting close to my bosom.
And we're going to start the chemotherapy today. Cross fingers and toes that it goes well. Ideally, they'd wait til she was somewhat back to normal ... but we can't. The tumors are shoving everything up into her chest, making it harder for her heart to work, which in turn affects her kidneys, which already have problems their ownselves since that's where the tumors are residing.
But you know, I can take every battle being a sunovabeech if it means that the overall war is "easy." Do the chemo, get the surgery, be cancer free.
Sounds good to me.
"Nobody expects the Spanish Inquisition."
Anyway, with a syringe, we got it down her. At midnight, we were free to nurse. Well, nursing a baby with a canula in her nose just AIN'T gonna happen, or at least, not this baby. Took it out. Tried for an hour to nurse. Not gonna happen, not after the whole canula incident. Okay, so bundle up all the wires, hoses and tubes and get her back in bed.
This morning, we were able to nurse (again, each time we have to go through a 3 person ordeal of moving wires, hoses and tubes and HER) ... but she threw it up. Probably because that's what she does at least once a day, having nothing to do with the nursing per se.
Tried again later. Did fine, except we had to give her blood pressure medication, which meant she threw up again. Not an easy one for taking any medicine by mouth, even before all of this. Oh! And mixed in all of this, The Husband is trying to hold an oxygen mask close enough to her that she'll breathe some of it, but not so close that she fights like a wildcat to get it away. Hmmm. Back when we were in college, I don't think that that is quite the way he envisioned getting close to my bosom.
And we're going to start the chemotherapy today. Cross fingers and toes that it goes well. Ideally, they'd wait til she was somewhat back to normal ... but we can't. The tumors are shoving everything up into her chest, making it harder for her heart to work, which in turn affects her kidneys, which already have problems their ownselves since that's where the tumors are residing.
But you know, I can take every battle being a sunovabeech if it means that the overall war is "easy." Do the chemo, get the surgery, be cancer free.
Sounds good to me.
Thursday, January 26, 2006
Tell me again how lucky I am
Okay, I understand the mission behind it, but I'm getting tired of people telling me how "lucky" I am. Yeah, yeah, yeah, I know ... I'm lucky to live in a country where I can get good healthcare. I'm lucky to have a good, close family. I'm lucky that it's Wilm's tumors and not some worse type.
But it's one thing to know this yourself and comment on it, and quite another for someone who is not going through this to lecture you on it. My dear daddy, bless his pointed head, actually said, "If you'd been born when I was, you'd have two dead babies right now." (My first child had emergency surgery for a blockage when he was an infant.)
It has been ONE WEEK since we found out that the happiest baby in the world has cancer in not one, but both kidneys. Yes, the cancer is curable, but guess what? That's only one part of the equation. Killing the cancer has to be balanced with saving the kidneys, saving the heart. I always thought it was a quip when people would say "the thing with chemo is, you hope it will kill your cancer before it kills you." Guess what. It ain't a joke. It is literally true.
Let ME decide how lucky I am, please. And unless you have had a child fight cancer ... do not tell me I'm "lucky."
Lizard Eater
p.s. If another person tells me "this is a good cancer to have," they're going to get ... well, they'll get a mean look. Aw heck, probably not. Okay, then, then ... THEY'LL GET A TOTAL POKER FACE!!! Ha. That'll teach 'em.
But it's one thing to know this yourself and comment on it, and quite another for someone who is not going through this to lecture you on it. My dear daddy, bless his pointed head, actually said, "If you'd been born when I was, you'd have two dead babies right now." (My first child had emergency surgery for a blockage when he was an infant.)
It has been ONE WEEK since we found out that the happiest baby in the world has cancer in not one, but both kidneys. Yes, the cancer is curable, but guess what? That's only one part of the equation. Killing the cancer has to be balanced with saving the kidneys, saving the heart. I always thought it was a quip when people would say "the thing with chemo is, you hope it will kill your cancer before it kills you." Guess what. It ain't a joke. It is literally true.
Let ME decide how lucky I am, please. And unless you have had a child fight cancer ... do not tell me I'm "lucky."
Lizard Eater
p.s. If another person tells me "this is a good cancer to have," they're going to get ... well, they'll get a mean look. Aw heck, probably not. Okay, then, then ... THEY'LL GET A TOTAL POKER FACE!!! Ha. That'll teach 'em.
Wednesday, January 25, 2006
The Journey Changes
SCREEEEEEEEECH.
That was the sound, not unlike a record player needle scratching across an LP, of one life screeching to a halt, in order to violently change directions.
Last week, I took the baby in to the doctor. She'd been vomiting some yellow stuff, and one side of her abdomen was swollen and hard. I hoped it was gas/indigestion, worried that it might be a blockage of some kind.
The pedi immediately sent us to get an xray. 15 minutes later, in the car on the way home, she caught me on my cell. Instructed me to instantly turn around. And head for the ER at the children's hospital.
Well, it's a week later. After an ultrasound, echocardiograms, xrays, CT scans and slicing her open to do a biopsy, we know that Little Warrior has bilateral Wilm's tumors in both of her kidneys.
Amazing how fast your perspective changes. You become grateful for such crumbs: we're grateful that it's Wilm's; they have a good rate for cure. We're grateful that they both have "favorable" histologies. We're grateful that the lymph nodes biopsied were clear.
We're profoundly grateful for our friends and family who are enabling us to just concentrate on LW right now, while they take care of the older 3.
And we're learning that just because something is a cliche, just because you know about it, doesn't mean it won't happen to you. 5 levels of grief? Yup. Have been experiencing them all. Incredulity -- a baby with cancer??? That's the most ridiculous thing I ever heard of. Rage at the situation, at the tumors themselves. Especially once I learned that the reason she's never been as roly poly as my others were was because the tumors were gobbling up her nutrition. MY wonderful, homemade breastmilk was being consumed by these tumors? That's like a criminal breaking into your home, stealing your goods, beating up your sister, then eating the birthday cake you made for her birthday. WTF???
Right now, she's recovering from the surgery. Surgery that hasn't actually done anything in the cure, it only provided us with information. Next step is chemo -- hoping to start it either day after tomorrow or the day after that.
Do I sound calm? I guess I am, at the moment. First you cry. And in my case, then you cry more. Then more. Then more. Then more. And then, it's time for the journey to begin.
Journey to ministerial life. It just became much simpler.
Journey to life.
That was the sound, not unlike a record player needle scratching across an LP, of one life screeching to a halt, in order to violently change directions.
Last week, I took the baby in to the doctor. She'd been vomiting some yellow stuff, and one side of her abdomen was swollen and hard. I hoped it was gas/indigestion, worried that it might be a blockage of some kind.
The pedi immediately sent us to get an xray. 15 minutes later, in the car on the way home, she caught me on my cell. Instructed me to instantly turn around. And head for the ER at the children's hospital.
Well, it's a week later. After an ultrasound, echocardiograms, xrays, CT scans and slicing her open to do a biopsy, we know that Little Warrior has bilateral Wilm's tumors in both of her kidneys.
Amazing how fast your perspective changes. You become grateful for such crumbs: we're grateful that it's Wilm's; they have a good rate for cure. We're grateful that they both have "favorable" histologies. We're grateful that the lymph nodes biopsied were clear.
We're profoundly grateful for our friends and family who are enabling us to just concentrate on LW right now, while they take care of the older 3.
And we're learning that just because something is a cliche, just because you know about it, doesn't mean it won't happen to you. 5 levels of grief? Yup. Have been experiencing them all. Incredulity -- a baby with cancer??? That's the most ridiculous thing I ever heard of. Rage at the situation, at the tumors themselves. Especially once I learned that the reason she's never been as roly poly as my others were was because the tumors were gobbling up her nutrition. MY wonderful, homemade breastmilk was being consumed by these tumors? That's like a criminal breaking into your home, stealing your goods, beating up your sister, then eating the birthday cake you made for her birthday. WTF???
Right now, she's recovering from the surgery. Surgery that hasn't actually done anything in the cure, it only provided us with information. Next step is chemo -- hoping to start it either day after tomorrow or the day after that.
Do I sound calm? I guess I am, at the moment. First you cry. And in my case, then you cry more. Then more. Then more. Then more. And then, it's time for the journey to begin.
Journey to ministerial life. It just became much simpler.
Journey to life.
Tuesday, December 13, 2005
To the Christians in this time of Christmas ...
What kind of Christian are you?
So, what kind of Christian are you? Are you a Matthew 25:35 Christian or a John 14:6 Christian?
These seem to be the two camps. Those who place all of the weight upon John, when he reported Christ saying “"I am the way and the truth and the life. No one comes to the Father except through me,” and those who put their attentions on Christ’s words: “For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me… I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' '”
So, which are you?
If you call yourself a Christian, when faced with tolerance and inclusiveness, which path do you choose? When a salesclerk at Target greets you with a merry, “Happy Holidays!” do you choose to turn to the verse of decisiveness that declares no tolerance for those of a different religion or do you turn to the verse that says that whatever you do for the least person, the person of the lowest class, you have done that for Him?
What Would Jesus Do?
So, what kind of Christian are you? Are you a Matthew 25:35 Christian or a John 14:6 Christian?
These seem to be the two camps. Those who place all of the weight upon John, when he reported Christ saying “"I am the way and the truth and the life. No one comes to the Father except through me,” and those who put their attentions on Christ’s words: “For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me… I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' '”
So, which are you?
If you call yourself a Christian, when faced with tolerance and inclusiveness, which path do you choose? When a salesclerk at Target greets you with a merry, “Happy Holidays!” do you choose to turn to the verse of decisiveness that declares no tolerance for those of a different religion or do you turn to the verse that says that whatever you do for the least person, the person of the lowest class, you have done that for Him?
What Would Jesus Do?
Thursday, December 01, 2005
Walking the ministering walk
Our congregation doesn't currently have a minister, so I've been asked to do some ministerial type things this year. Most, I felt to be a stretch for me, but stretching is good. Most recently I did my first memorial service and my second baby dedication.
The memorial service, which, for obvious reasons, stressed me out -- this sounds like a weird thing to say about a memorial, but it went really well. I was very surprised that while I was in the pulpit, I had no urge to cry. Of course, the lady whom I was memorializing was highly strong, very dignified -- I could almost hear her saying, "No, of COURSE you aren't going to cry. Strong women don't cry! And you have a job to do. Buck up!"
Now, as soon as I left the sanctuary and a crying parishioner came up to me, the tears flowed. But that's okay. I have it on good authority that seminarians are allowed to be human. Of course, once I'm ordained, that's revoked. Ha.
The dedication was quite enjoyable. All baby dedications are, but in a way, this was my first. The actual first one was when I had to step in for a minister who couldn't attend as planned, so I was using her words and script. For this one, it was crafted between myself and the family. And the baby and her brother were adorable. Hmm. I need to get a minister or seminary student to come by our church so *my* baby can be dedicated.
Got our holiday cards out the Friday after Thanksgiving, which is insane. But, we just moved, and figured ours better be the first, if we wanted to get our new address on everyone's list. "Everyone's going to hate us," said The Husband. "No," sez I, "they'll realize it's because we moved." "Nope. They'll just hate us," responded Hub.
So, my best friend calls me up. "You suck," she informs me.
Score one for the cynic.
The memorial service, which, for obvious reasons, stressed me out -- this sounds like a weird thing to say about a memorial, but it went really well. I was very surprised that while I was in the pulpit, I had no urge to cry. Of course, the lady whom I was memorializing was highly strong, very dignified -- I could almost hear her saying, "No, of COURSE you aren't going to cry. Strong women don't cry! And you have a job to do. Buck up!"
Now, as soon as I left the sanctuary and a crying parishioner came up to me, the tears flowed. But that's okay. I have it on good authority that seminarians are allowed to be human. Of course, once I'm ordained, that's revoked. Ha.
The dedication was quite enjoyable. All baby dedications are, but in a way, this was my first. The actual first one was when I had to step in for a minister who couldn't attend as planned, so I was using her words and script. For this one, it was crafted between myself and the family. And the baby and her brother were adorable. Hmm. I need to get a minister or seminary student to come by our church so *my* baby can be dedicated.
Got our holiday cards out the Friday after Thanksgiving, which is insane. But, we just moved, and figured ours better be the first, if we wanted to get our new address on everyone's list. "Everyone's going to hate us," said The Husband. "No," sez I, "they'll realize it's because we moved." "Nope. They'll just hate us," responded Hub.
So, my best friend calls me up. "You suck," she informs me.
Score one for the cynic.
Thursday, October 13, 2005
A little surreal, this ministerial stuff
To Do List for Today:
* Watch weepy movies like Beaches and Steel Magnolias, in an effort to find my emotional Kegel muscle. Ain't that a great term? See, I'll be doing a memorial service in a couple of weeks for someone I cared about. I am a crier, and am afraid that I'll be weeping the whole time. So a learned friend of mine recommended that I cue up sad movies to the cry scene, then practice stopping the flow of tears. Exactly like when they tell you to practice stopping your pee to find your Kegel muscle.
*Pore over "The X-rated Bible, an Irreverent Survey of Sex in the Scriptures" to find a good reading for my sermon about sex (and canvass) for Sunday.
*Work on plans for the annual Halloween party.
*Deal with a baby that is fussy from innoculations.
Just your average ordinary day for a seminarian/mother of 4.
* Watch weepy movies like Beaches and Steel Magnolias, in an effort to find my emotional Kegel muscle. Ain't that a great term? See, I'll be doing a memorial service in a couple of weeks for someone I cared about. I am a crier, and am afraid that I'll be weeping the whole time. So a learned friend of mine recommended that I cue up sad movies to the cry scene, then practice stopping the flow of tears. Exactly like when they tell you to practice stopping your pee to find your Kegel muscle.
*Pore over "The X-rated Bible, an Irreverent Survey of Sex in the Scriptures" to find a good reading for my sermon about sex (and canvass) for Sunday.
*Work on plans for the annual Halloween party.
*Deal with a baby that is fussy from innoculations.
Just your average ordinary day for a seminarian/mother of 4.
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