This week was pretty low key. Not to say that there was nothing going on, we are still plenty busy keeping pain in check, making sure Rebekah is peeing, trying to make her eat, giving her the shots for her blood clot (which she frequently reminds me and Shawn that she hates), taking care of the feeding tube (too bee), helping Rebekah walk around. Oh and we had 2 sick kids this week, Victor was sick on his Birthday and we sent him to stay with Shawn's mom and dad who were so awesome to take him in and care for him with the help of my sister in law. (It's such a blessing to have his family close by, even though I know my neighbors would be more than willing to help out, it's just easier to impose on family :D. ) We brought Victor home mid week and quarantined him and Joe in what was Jonny and Victor's room only allowing them out to use the restroom and clean their teeth.
We did go to a movie today, yes I know it's Sunday, but here in Utah that also means less people and it's flu and RSV season so that works out to be the best day to take her. Rebekah's ANC (Absolute Neutrophil Count) a measure of how her immune system is functioning, was 3.6 on Friday and that's awesome so we felt pretty safe taking her out and she had been begging to see The Croods. It was pretty good and she ate some candy and popcorn which made me happy.
Rebekah and I are still trying to figure out how best to give her the shots she needs 2 times a day. She has been very cooperative and doesn't fight me about it but she does tell me how much they hurt and she wished it didn't. We are also working on ways to make her more comfortable with the port and the NG tube. Rebekah and I sometimes butt heads and yell at each other we are both so frustrated with how things have changed so much so quickly. She has been crying more and I know it's because of all the changes. I sometimes worry she is getting depressed then the next moment or day she is laughing at something or just coping better. She is one tough cookie.
God bless you all, and Good Night
Sunday, March 24, 2013
Sunday, March 17, 2013
Our First Fever (sorry for the length)
We got home from the hospital on Saturday (3/9) with the expectation that we would not be back for a few weeks when she starts a new chemo set she hasn't had before. On Tuesday (3/12) Rebekah got herself out of bed and walked / stumbled (some of the drugs she is on make he look like a tiny drunk) to the couch in the living room. I helped her get up and felt like she was warm so I took her temp and she was 101.6 I couldn't believe it so I checked her other ear, same result, shaking my head I went and got the old thermometer it read 38.8 c. I didn't need to convert it to know it was in the range they told me I had to call about. I found her discharge papers still packed in one of the bags from the hospital, and called the number for the Hem-Onc clinic at primaries and called they very patiently told me to put the Emla cream on her port, cover it with the special dressing or plastic wrap and head into the clinic making sure to put her mask on before she comes into the hospital. I am seriously freaked out because so many things I have read online say that she needs to have antibiotics within 2 hours of spiking a fever or she could die. I pack her into the car as quickly as I can, text my husband that we are heading up to the clinic start heading out. I had almost no gas in the van so we had to stop and get gas so we could make the 60 miles up to the clinic, I vow to myself that I will never let my van get below half full ever again.
We arrive safely at the hospital Rebekah is wearing nothing but a white tee shirt, a pink blanket and her mask, I park the van and carry her into the hospital half running, the security team at the front desk don't bother to ask where we are heading and the people waiting at the elevators let us take the fist one that comes by ourselves. I get up to the clinic and head in the wrong door but the moms that see me let the nurses know I need help. They direct me to the front desk. I tell them her name and they direct us into a room and ask if her port is ready to access. they take her temp, access her port draw for the standard set of labs and start her on a bag of fluid and their standard big coverage antibiotic. I feel less scared because it's only been and hour since we left our house, these guys don't mess around with fevers in cancer patients. Shortly after they brought in a urine sample cup and filled it from her catheter. About 30 mins after we got there a doctor came in to see us and talk to us about what she thought might have caused the fever. She also had some of the labs back and said that her ANC (a magic number that has to do with the big gun white blood cells) was up from Saturday a very good sign, and that she was wasn't dehydrated and her liver and kidney functions were good. And the test that they do for bacteria in the blood wasn't back yet but some of the indicator tests looked like it wouldn't be that. She told me that she thought it was the catheter that was the problem and that it would take at least overnight to figure out what should be done about it.
I texted Shawn and asked him to be the one to stay that first night with her, I know he has hated being away from her when important things are happening and I was exhausted. they get us settled back in ICS (it's just down the hall) and we start the waiting. Nothing of note happens that night that I am aware of Shawn says it was a long night when I get there that next morning after dropping the boys off to school. He leaves for work and shortly after that I get called out to rounds with the doctors. they talk about the bacteria that came back in her urine it was only one type (that is kind of a rare thing usually it's a whole mix so they want to wait and see what it is then start her on an antibiotic that is more specific for it. They also want to see if the tumor has shifted or shrunk any so they can remove the catheter so they schedule an ultrasound. A few hours later we head down to ultrasound and they look at the tumor next to the old ultrasound it's the same size and in the same place causing the same amount of bladder displacement but it has more necrosis in it. Happy dance the tumor is dieing, the nurse, Kathy, does a little raise the roof thing to celebrate with me, but the radiologist says he doesn't think that the catheter will be able to come out :( . We head back to the room to wait. The next day a doctor comes to tell us that the bacteria causing her infection in called klebsiella and it likes to stick to plastic so he wants to take out the catheter while we treat the infection and cath her intermittently for a day or so to beat it down with IV antibiotics then put the foley back in and send her home with oral antibiotics oh and he says Rebekah is very underweight and he wants to put a feeding tube down her nose and he would like that done tonight (3/14). I tell him that I would not like to come home with 2 tubes in my daughter and he tells me he thinks it's very unlikely she will be able to pee well enough on her own to keep her kidney function good enough to deal with the chemo. So the foley comes out and the NG tube goes in shortly after that. Rebekah didn't handle the NG tube well but was very glad not to have the catheter. She threw up the tube at about 8pm and just after the nurse pulled it out of her nose she said "We should have asked Heavenly Father to help me not puke up my tube." she said it softly and I didn't hear her so I asked her to repeat herself and so she said it again. (The things we need babes to teach us.) The nurse left the room to get a new tube to place it again. Rebekah and I prayed together that she would be able to pee, that she would not need to have the catheter again and that she wouldn't gag up her tube again. The nurse came in and replaced the NG tube.
Rebekah didn't gag anymore and the next morning (3/15) I found out that her out put (pee) was 1000cc and her input (from the NG and IV) was 900cc. Kathy did a little raise the roof with me. {side note: the nurses on that floor can request a patient if they want to.} I didn't get called out when they did rounds that morning but 2 doctors came in after and told me how shocked they were that she was able to pee at all last night, and that she would not be going home that day because she had a fever during the night. (Yes, I sleep that soundly at the hospital; the nurse came and did vitals and changed diapers several times and didn't wake me.) So one more night and she would be home. I called Shawn and told him of the pee and other news and asked if he would take that night he did, and brought her home to me on Saturday with no catheter :D.
This tells me God hears and answers the prayers of children and mothers and that he loves my little girl. This whole event was a mixed blessing.
Tonight (3/17) Rebekah is feeling more like herself, laughing and getting her big brother Joe in trouble. Most of her hair has fallen out and Joe was telling her that it could come back a different color she was a bit freaked out about that and I let her know that if did and she didn't like it I would let Aunt Summer dye it any color that she wanted. She calmed down and asked for the night feed to start through her tubey.
We arrive safely at the hospital Rebekah is wearing nothing but a white tee shirt, a pink blanket and her mask, I park the van and carry her into the hospital half running, the security team at the front desk don't bother to ask where we are heading and the people waiting at the elevators let us take the fist one that comes by ourselves. I get up to the clinic and head in the wrong door but the moms that see me let the nurses know I need help. They direct me to the front desk. I tell them her name and they direct us into a room and ask if her port is ready to access. they take her temp, access her port draw for the standard set of labs and start her on a bag of fluid and their standard big coverage antibiotic. I feel less scared because it's only been and hour since we left our house, these guys don't mess around with fevers in cancer patients. Shortly after they brought in a urine sample cup and filled it from her catheter. About 30 mins after we got there a doctor came in to see us and talk to us about what she thought might have caused the fever. She also had some of the labs back and said that her ANC (a magic number that has to do with the big gun white blood cells) was up from Saturday a very good sign, and that she was wasn't dehydrated and her liver and kidney functions were good. And the test that they do for bacteria in the blood wasn't back yet but some of the indicator tests looked like it wouldn't be that. She told me that she thought it was the catheter that was the problem and that it would take at least overnight to figure out what should be done about it.
I texted Shawn and asked him to be the one to stay that first night with her, I know he has hated being away from her when important things are happening and I was exhausted. they get us settled back in ICS (it's just down the hall) and we start the waiting. Nothing of note happens that night that I am aware of Shawn says it was a long night when I get there that next morning after dropping the boys off to school. He leaves for work and shortly after that I get called out to rounds with the doctors. they talk about the bacteria that came back in her urine it was only one type (that is kind of a rare thing usually it's a whole mix so they want to wait and see what it is then start her on an antibiotic that is more specific for it. They also want to see if the tumor has shifted or shrunk any so they can remove the catheter so they schedule an ultrasound. A few hours later we head down to ultrasound and they look at the tumor next to the old ultrasound it's the same size and in the same place causing the same amount of bladder displacement but it has more necrosis in it. Happy dance the tumor is dieing, the nurse, Kathy, does a little raise the roof thing to celebrate with me, but the radiologist says he doesn't think that the catheter will be able to come out :( . We head back to the room to wait. The next day a doctor comes to tell us that the bacteria causing her infection in called klebsiella and it likes to stick to plastic so he wants to take out the catheter while we treat the infection and cath her intermittently for a day or so to beat it down with IV antibiotics then put the foley back in and send her home with oral antibiotics oh and he says Rebekah is very underweight and he wants to put a feeding tube down her nose and he would like that done tonight (3/14). I tell him that I would not like to come home with 2 tubes in my daughter and he tells me he thinks it's very unlikely she will be able to pee well enough on her own to keep her kidney function good enough to deal with the chemo. So the foley comes out and the NG tube goes in shortly after that. Rebekah didn't handle the NG tube well but was very glad not to have the catheter. She threw up the tube at about 8pm and just after the nurse pulled it out of her nose she said "We should have asked Heavenly Father to help me not puke up my tube." she said it softly and I didn't hear her so I asked her to repeat herself and so she said it again. (The things we need babes to teach us.) The nurse left the room to get a new tube to place it again. Rebekah and I prayed together that she would be able to pee, that she would not need to have the catheter again and that she wouldn't gag up her tube again. The nurse came in and replaced the NG tube.
Rebekah didn't gag anymore and the next morning (3/15) I found out that her out put (pee) was 1000cc and her input (from the NG and IV) was 900cc. Kathy did a little raise the roof with me. {side note: the nurses on that floor can request a patient if they want to.} I didn't get called out when they did rounds that morning but 2 doctors came in after and told me how shocked they were that she was able to pee at all last night, and that she would not be going home that day because she had a fever during the night. (Yes, I sleep that soundly at the hospital; the nurse came and did vitals and changed diapers several times and didn't wake me.) So one more night and she would be home. I called Shawn and told him of the pee and other news and asked if he would take that night he did, and brought her home to me on Saturday with no catheter :D.
This tells me God hears and answers the prayers of children and mothers and that he loves my little girl. This whole event was a mixed blessing.
Tonight (3/17) Rebekah is feeling more like herself, laughing and getting her big brother Joe in trouble. Most of her hair has fallen out and Joe was telling her that it could come back a different color she was a bit freaked out about that and I let her know that if did and she didn't like it I would let Aunt Summer dye it any color that she wanted. She calmed down and asked for the night feed to start through her tubey.
Sunday, March 10, 2013
Home
We got to bring Rebekah home late yesterday afternoon. I had been overwhelmed by the idea of how much care will be involved with keeping her well and plumping her back up between the chemo cycles. She was in good spirits and was enjoying having her brothers around her. I was trying to see if she really needed her zoferan and it seems she does, so she tummy wasn't feeling that great today. I gave that to her and she dozed off, she is napping as I am typing. I woke up with a sore throat and have been using a mask and washing my hands a ton. I am not sure if I am sick, but I can't take the chance with my sweet angel. I am hoping when she wakes that she will feel more like walking and eating. My least favorite thing about having her home is having to give her her shots, I had to have a talk with her today about how we do it and then it's over and we don't need to worry or freak out or cry about it as that will only make us feel bad for longer. I have decided not to let the boys be in the room when I do it because when she looks at their sad faces she cries and their pity afterword isn't helpful for moving forward with the day. Rebekah is moving around a lot more then she was at the hospital even trying to get up and get food by herself (this doesn't really go well but I admire her efforts.) I haven't mentioned; one of the chemo drugs she has to take and the one she will get the most often causes foot drop. She had already been having a hard time because she walked exclusively on her tip toes for over a month so between that and the surgery and tubes and wires keeping her in bed for a week, she's pretty weak and is having to learn balance all over. She has adjusted to having the catheter better then the last time. When they put it in on Friday night the nurse said she didn't feel resistance at the bladder like when it was placed the first time. I am hopeful that this means that the tumor is getting smaller or more gelatinous as the doctor I met last weekend told that they do before the body starts removing the dead cells, he went into some interesting details that put Rebekah to sleep. (That was a doctor who mostly focus on research and only does some clinical days in the hospital.) Anyway; We are optimistic that the tumor will shrink rapidly and we can get that thing out so she can start feeling a bit more normal. Oh and we are also hoping that when the tumor shrinks Rebekah will regain her ability to feel and control her bowels.
Thursday, March 7, 2013
3/7/2013
Today was a day of learning and fear. I gave my first sub q injection. I let my daughter know that when we come home I will be the one giving her all her meds. She didn't want me involved with them at all but once I told her that was how it was going to be she was ok with it. I learned how scary a fever can be and to be careful not to mask one. I also learned that if I feel weird or am in doubt I should just call, there is no room for "wait and see" at times because that is when these kids pass away. I also learned that we have to let her be as normal as we can without exposing her to a bunch of germs, can you say balance, I was assured I would get to a point where I was good at that. We've also had a lot of bouncing around lately about who was going to make the final call as to when the foley would be coming out and if we were going to have to put a new foley back in or strait cath her at home every 4 hours. After days of talk the doctors decided to let us decide, how nice of them. So we are going to have them take her foley out and give her a few hours to see if she can pee on her own, even if it just dribbles out into the bed or a diaper. (this will make me the happiest) Or if she can't pass any pee at all :( then we can pick either the foley again which we know for sure she hates or the strait cath every 4 hours which we think she will also hate. At any rate I am wondering how the heck my parents ever came to the conclusion it would be ok to bring my sister home. I don't feel up to the challenge of keeping the house super clean and taking care of her needs as well as making sure everyone else is taken care of.
Good night all
Good night all
Tuesday, March 5, 2013
So Tired
I felt fine leaving the hospital today....
It has been a long day, Rebekah has been very sleepy and this morning was no exception she was mean to people who she normally loves to see and was hushing people left, right and center, trying to go back to sleep. We reaccessed Rebekah's port after 1pm and while it was out we (I was in my swimsuit) took a bit of a shower. Rebekah has been rashy and it was on her head, chest and back, we had washed her hair with no rinse shampoo so I was thinking she maybe sensitive to it and rinsing it all off of her might help (I later found out that the chemo can come out in their sweat too. Extra reason to take a shower) I held her on my lap in a shower chair leaning back so as not to put pressure on her catheter. We got her all clean and she seemed to really enjoy having the water running over her belly and back. We had just got her back in bed when we had visitors. I was hoping for a few minutes for Rebekah to get to know these people that Mommy and Daddy love but, she puked. We headed back to the shower to get it out of her hair lest she smell until we could get her to agree to go back in. The saddest part was that she had just tossed up the french fry that she had eaten and all the shake I was able to get her to sip that day. That was everything she had eaten since the chocolate covered strawberry she ate between chemo doses the night before (yes, I know she's not supposed to eat during that time but she wanted to and with her not wanting anything the whole day before that, I couldn't say no.) { Getting our sweet little girl to eat has been a huge source frustration for both my husband and myself and anything that she agrees to eat feels like a major victory. It was mentioned at rounds this morning and I felt a bit of shame but Dr. Luke gave me a reassuring nod and stepped closer to me, I think to indicate that it was ok and he was on my side.}
We got her to clean her mouth out before she nodded off again. I rushed off to go be with my boys and feed them. I got about 30 minutes away from the hospital and I started getting so tired, I had all these plans for when I got home. Cooking a good dinner, making banana bread, washing some clothes, washing myself, helping the boys feel loved and cleaning the dishes. I sit here with the dinner done, it was good (chicken and asparagus) I bought some bananas, I have some clothes sitting in the washer waiting for me to move them to the dryer, I think the boys now know how many curse words I know (insert shameful downcast look), some dishes are in the dishwasher, I will carve out 15 mins after I post this to take care of the other one. I need to work on finishing the list. I get a new day tomorrow to do better at the loving of my boys and to remember that the other crap can wait. I am a work in progress, not a perfect person. I have bad days and get to do better tomorrow. I know I am loved even when I'm not at my best. I guess I had a glimpse of how Rebekah was feeling, I can be more patient with her.
Lots of love to you all,
Goodnight
It has been a long day, Rebekah has been very sleepy and this morning was no exception she was mean to people who she normally loves to see and was hushing people left, right and center, trying to go back to sleep. We reaccessed Rebekah's port after 1pm and while it was out we (I was in my swimsuit) took a bit of a shower. Rebekah has been rashy and it was on her head, chest and back, we had washed her hair with no rinse shampoo so I was thinking she maybe sensitive to it and rinsing it all off of her might help (I later found out that the chemo can come out in their sweat too. Extra reason to take a shower) I held her on my lap in a shower chair leaning back so as not to put pressure on her catheter. We got her all clean and she seemed to really enjoy having the water running over her belly and back. We had just got her back in bed when we had visitors. I was hoping for a few minutes for Rebekah to get to know these people that Mommy and Daddy love but, she puked. We headed back to the shower to get it out of her hair lest she smell until we could get her to agree to go back in. The saddest part was that she had just tossed up the french fry that she had eaten and all the shake I was able to get her to sip that day. That was everything she had eaten since the chocolate covered strawberry she ate between chemo doses the night before (yes, I know she's not supposed to eat during that time but she wanted to and with her not wanting anything the whole day before that, I couldn't say no.) { Getting our sweet little girl to eat has been a huge source frustration for both my husband and myself and anything that she agrees to eat feels like a major victory. It was mentioned at rounds this morning and I felt a bit of shame but Dr. Luke gave me a reassuring nod and stepped closer to me, I think to indicate that it was ok and he was on my side.}
We got her to clean her mouth out before she nodded off again. I rushed off to go be with my boys and feed them. I got about 30 minutes away from the hospital and I started getting so tired, I had all these plans for when I got home. Cooking a good dinner, making banana bread, washing some clothes, washing myself, helping the boys feel loved and cleaning the dishes. I sit here with the dinner done, it was good (chicken and asparagus) I bought some bananas, I have some clothes sitting in the washer waiting for me to move them to the dryer, I think the boys now know how many curse words I know (insert shameful downcast look), some dishes are in the dishwasher, I will carve out 15 mins after I post this to take care of the other one. I need to work on finishing the list. I get a new day tomorrow to do better at the loving of my boys and to remember that the other crap can wait. I am a work in progress, not a perfect person. I have bad days and get to do better tomorrow. I know I am loved even when I'm not at my best. I guess I had a glimpse of how Rebekah was feeling, I can be more patient with her.
Lots of love to you all,
Goodnight
Sunday, March 3, 2013
3/2- 3/3 My turn in the hospital
I learned some coolish things on this turn with Rebekah.
1. there is no limit to the amount of pain meds that a doctor can prescribe to a cancer patient and
2. Some nurses just don't get that when one pain med is ordered to be given every on schedule every 3 hours and a patient is changed to a new med that it too should be scheduled as well.
My daughter; those of you who have known her for more then the last month know she is super sweet and kind, was acting like someone else when I arrived requiring her leg to be rubbed just so and yelling at people. I was very worried, I had had the morphine scheduled so that she would be comfortable but not groggy I thought "oh my gosh it's not working anymore what are we going to do they said they would go up to every 3 but would they up the dose and increase the chance of side effects" then I thought "is this new guy pocketing my little girls meds?" I asked Shawn about her pain control and he told me that she had been switched to Oxycontin which should last longer. Seeing what I thought meant it was not working I asked when she was going to be getting it next. The nurse told me that she was ok to have it now, (pause for those who know what I might have been thinking) I used great restraint in not yelling at the nurse or hitting him and asked how long ago she could have had the medicine, to which he replied "oh a half hour, 45 minutes; do you want me to give it to her now?" (angry pause again)
"yes"
He gives it to her. Shawn leaves after kissing and hugging both of his girls goodbye, our hearts break a little bit, but we know he has to be with the boys. After 30 minutes or so Rebekah has returned to her sweet self and is nice to the nurse, I say "Meet Rebekah that's the little girl I know" it seems like not too long after things start to go down hill. We call in the nurse to see what time she can have her pain meds and again he says she could have had them a little while ago. GAAAHHH...... I think he can tell I am frustrated and he goes into how some parents push too much for the pain meds and they can suppress the nervous system too much and keep the kid practically sedated ect. It's close to shift change so I let that happen then tell the resident on that night when she comes in that I want her meds to be scheduled because I want her out of pain and able to talk to us and not be in pain waiting for us to get a clue and ask. She wholeheartedly agreed with me and we walked out to find out how much time was going by between doses earlier as were out in front of Bek's room I saw Dr Sato there adn she over heard us talking and she said "there is no limit to the amount of pain medicine we can give her, we want her to stay comfortable. It's not good for her to be in pain, can slow recovery" I am utterly relived to know that the doctors are on my side even if a nurse or two might not be. (it was always the ones who hadn't worked on ICS for as long that wanted us to ask for the meds after that had been scheduled out.) I hope Rebekah has a good nurse tonight that gives the meds on time or Shawn will be in for a long night again.
1. there is no limit to the amount of pain meds that a doctor can prescribe to a cancer patient and
2. Some nurses just don't get that when one pain med is ordered to be given every on schedule every 3 hours and a patient is changed to a new med that it too should be scheduled as well.
My daughter; those of you who have known her for more then the last month know she is super sweet and kind, was acting like someone else when I arrived requiring her leg to be rubbed just so and yelling at people. I was very worried, I had had the morphine scheduled so that she would be comfortable but not groggy I thought "oh my gosh it's not working anymore what are we going to do they said they would go up to every 3 but would they up the dose and increase the chance of side effects" then I thought "is this new guy pocketing my little girls meds?" I asked Shawn about her pain control and he told me that she had been switched to Oxycontin which should last longer. Seeing what I thought meant it was not working I asked when she was going to be getting it next. The nurse told me that she was ok to have it now, (pause for those who know what I might have been thinking) I used great restraint in not yelling at the nurse or hitting him and asked how long ago she could have had the medicine, to which he replied "oh a half hour, 45 minutes; do you want me to give it to her now?" (angry pause again)
"yes"
He gives it to her. Shawn leaves after kissing and hugging both of his girls goodbye, our hearts break a little bit, but we know he has to be with the boys. After 30 minutes or so Rebekah has returned to her sweet self and is nice to the nurse, I say "Meet Rebekah that's the little girl I know" it seems like not too long after things start to go down hill. We call in the nurse to see what time she can have her pain meds and again he says she could have had them a little while ago. GAAAHHH...... I think he can tell I am frustrated and he goes into how some parents push too much for the pain meds and they can suppress the nervous system too much and keep the kid practically sedated ect. It's close to shift change so I let that happen then tell the resident on that night when she comes in that I want her meds to be scheduled because I want her out of pain and able to talk to us and not be in pain waiting for us to get a clue and ask. She wholeheartedly agreed with me and we walked out to find out how much time was going by between doses earlier as were out in front of Bek's room I saw Dr Sato there adn she over heard us talking and she said "there is no limit to the amount of pain medicine we can give her, we want her to stay comfortable. It's not good for her to be in pain, can slow recovery" I am utterly relived to know that the doctors are on my side even if a nurse or two might not be. (it was always the ones who hadn't worked on ICS for as long that wanted us to ask for the meds after that had been scheduled out.) I hope Rebekah has a good nurse tonight that gives the meds on time or Shawn will be in for a long night again.
waiting for poop
3/2
Rebekah is going to be taking 8 types of chemo drugs at different times and in different combinations throughout the next year with a few short breaks here and there. Tonight is her second night of chemo. Yes, they started her the same night that we sat down and got our official diagnosis. Last night I was home with the boys and Shawn got to be here for the best side effect ever..... diarrhea. Now; Rebekah's last poop was on Monday after the last enema I was told to give her for her constipation (insert sarcastic laugh here). Shawn told me just as I was getting ready to come up that she had " explosive" diarrhea last night and that in addition to that the poo can't be left on her skin long because it contains some of the chemo drugs and could do damage to her skin. So I am gearing up for some serious crap works and having to change my big girls diapers. oh and he told me that it was really smelly. They gave her the first type of chemo she gets, Temozolomide, she gets to have it mixed with some apple juice (she has told us it tastes horrible, but she still takes it). a few minutes later she rips one and there is a smell I have never before in my life conceived would erupt from someone I get birth to. I, a woman who prides herself for not having a gag reflex, kind of gagged a little. I told the nurse I was worried she had soiled herself and proceeded to check to the objection of my daughter, who told me she had not pooped. She hadn't yet. Then the nurse informed me that it was the next chemo that she was getting ready to give ( she has to cover herself and wear special gloves, and mask just to put the stuff into my little girls veins) the VinCRIStine and Irinotecan that cause the diarrhea. So in my mind I just thought "I am so going to hurl if it smells like this fart just did". I get on my purple gloves and get ready for the avalanche of foul smelling excrement. The nurse starts giving her the chemo first the V one then the Irin one and leaves since it takes an hour and 15 mins to transfuse. She comes back and I still have my gloves on waiting..... and then it happens...."Mom, I need you to change me, but don't wipe on my caf ader." The nurse is running something through Rebekah's port to rinse it out and I am the only one who can bravely step up to the plate and clean up my little boo's horribly foul poop. (I am hoping to prove to be as manly as my husband was last night, he cleaned up everyone of her poops with some help from the nurse). So I do my power pose (those who have been to time out for women know what I mean) gearing up to clean her and proceed it's not as bad as I thought it would be, I can do this, Rebekah was displeased with my having to clean near ad around her catheter but it got done and she was all clean. The nurse takes her vitals and then leaves Rebekah falls asleep and so do I. I wake in the middle of the night thinking that I missed a poo and her skin would be a mess, the nurse ( who requested to be with Rebekah again tonight after being with her last night) tells me she did change her one time but that was it and that she had started her on the anti-diarrhea meds earlier in the day....things that are good to know before you freak out.
Rebekah is going to be taking 8 types of chemo drugs at different times and in different combinations throughout the next year with a few short breaks here and there. Tonight is her second night of chemo. Yes, they started her the same night that we sat down and got our official diagnosis. Last night I was home with the boys and Shawn got to be here for the best side effect ever..... diarrhea. Now; Rebekah's last poop was on Monday after the last enema I was told to give her for her constipation (insert sarcastic laugh here). Shawn told me just as I was getting ready to come up that she had " explosive" diarrhea last night and that in addition to that the poo can't be left on her skin long because it contains some of the chemo drugs and could do damage to her skin. So I am gearing up for some serious crap works and having to change my big girls diapers. oh and he told me that it was really smelly. They gave her the first type of chemo she gets, Temozolomide, she gets to have it mixed with some apple juice (she has told us it tastes horrible, but she still takes it). a few minutes later she rips one and there is a smell I have never before in my life conceived would erupt from someone I get birth to. I, a woman who prides herself for not having a gag reflex, kind of gagged a little. I told the nurse I was worried she had soiled herself and proceeded to check to the objection of my daughter, who told me she had not pooped. She hadn't yet. Then the nurse informed me that it was the next chemo that she was getting ready to give ( she has to cover herself and wear special gloves, and mask just to put the stuff into my little girls veins) the VinCRIStine and Irinotecan that cause the diarrhea. So in my mind I just thought "I am so going to hurl if it smells like this fart just did". I get on my purple gloves and get ready for the avalanche of foul smelling excrement. The nurse starts giving her the chemo first the V one then the Irin one and leaves since it takes an hour and 15 mins to transfuse. She comes back and I still have my gloves on waiting..... and then it happens...."Mom, I need you to change me, but don't wipe on my caf ader." The nurse is running something through Rebekah's port to rinse it out and I am the only one who can bravely step up to the plate and clean up my little boo's horribly foul poop. (I am hoping to prove to be as manly as my husband was last night, he cleaned up everyone of her poops with some help from the nurse). So I do my power pose (those who have been to time out for women know what I mean) gearing up to clean her and proceed it's not as bad as I thought it would be, I can do this, Rebekah was displeased with my having to clean near ad around her catheter but it got done and she was all clean. The nurse takes her vitals and then leaves Rebekah falls asleep and so do I. I wake in the middle of the night thinking that I missed a poo and her skin would be a mess, the nurse ( who requested to be with Rebekah again tonight after being with her last night) tells me she did change her one time but that was it and that she had started her on the anti-diarrhea meds earlier in the day....things that are good to know before you freak out.
Saturday, March 2, 2013
No, I wasn't crying, the water in our apartment just sounds like a woman whaling.
I had to have an ugly cry tonight, err
this morning. My 4 year old daughter has cancer. There, I said it, ok
I typed it. It has been a lot easier to type then to say in the last
4 days, it's Saturday at 4 am and Friday night I got to come home for
the first time since we rushed our daughter to the hospital on
Tuesday. My heart feels like it might break for the pain my little
girl has been experiencing and will have to endure over the next
year. She has Rhabdomyosarcoma, she has to go through a year of
treatments including 8 types of chemo and radiation for 5 weeks,
because of the chemo she will loose her hair, the hair we have told
her over and over is so beautiful and that women pay lots of money to
have. It has natural highlights and honey low-lights it's very
straight and she knows mommy spends time straightening her curly
hair. I just don't know how to talk to her about the hair loss. My
husband thinks I am morbid when I talk of braiding it then cutting
the braid off for a scrap book. She has a cousin who has a bob and
it's so cute I am hoping I can talk her into letting us cut it short
before it starts to fall out.
PS the shower at the hospital has that same whaling woman sound too.
My world shattered.
After battling with some serious
crankiness, leg pains and constipation for nearly a month my husband
on Tuesday 2/26 got ready for work but instead took my daughter to get another opinion about her bowel troubles. I arrived at the doctors office shortly after dropping
our older children off at school. The doctor came in asked about her
back story and what we had done over the last month. We told him about her crankiness, the ultrasound we had done on the 20th, the enemas his colleague had us give her to move what was thought to be very full bowels, the miralax, the fact that she had started toe walking all the time, her lack of appetite, the flat shape of her non runny poop, the size difference I was seeing in her legs, her complaints of leg pains that started off and on at about 3 and a half, just like 2 of her brothers, but that had become more then just a night time thing. He asked us to remove her pants and looked at her legs
saw that her left leg looked swollen, felt her tummy and felt the
thing I had been rubbing on for days trying to get her to pass it
thinking it was a partial obstruction. He told us things weren't adding up and wanted to do some more tests, he left the room and called primary children's hospital about doing an MRI. They talked him down to an ultrasound at their facility that was closer to us in Riverton. We were sent home with a piece of paper and a time hopeful that this time we might get some real answers. As the time neared we tried to get Rebekah to drink the 16oz that they wanted her to have but didn't feel too bad when she refused because she hadn't really peed anyway. We arrived on time and waited as is usual when it was our turn we went back and talked lightly with the tech about what was going on she put the warm gel on Rebekah's small belly she fairly quickly scanned her tummy and moved to her kidneys I could see some pockets of fluid in her left kidney and it looked bigger then when they did the ultrasound the week before I let the tech know and she said it did look a bit swollen to her too. The tech left to get the radiologist and came back with him pretty quickly he looked things over and told us that things didn't look right, that what the ultrasound tech from the week before had said looked like full bowels was wrong and what we were seeing wasn't bowel at all. He left us for a few minutes to talk to the doctor that had sent us and got him on the line in the room for us. Feeling like letting Shawn take the lead on this whole thing I had him do the talking to the doctor and the radiologist explained to me that they wanted to do a CT scan with contrast and that they would need to put in an IV to do it. The tech brought in some crayons and a coloring book I called my mother in law to see if she could head to our apartment to be with the boys because we didn't know how long we would be. A nurse and the tech took us to put the IV in, Rebekah was not too keen on being poked but suffered through bravely. We moved to another room with the huge CT machine donned our lead aprons and tried our best to help our sweet little girl to hold still and let the "big camera" take her pictures. The tech told us to hang out in the room with her in place on the machine while the radiologist looked at the pics to be sure we got a clear image and could see what he wanted to see. The tech came back into the room and we started collecting our things thinking he had good clear pics and someone else would have to call and tell us what he had seen as is the case with most of these kinds of tests, but she told us to go into the viewing room with the radiologist so he could talk to us and that she would hang out with Rebekah. My heart was in my throat I had just said to Shawn as we were waiting that he was making bad faces and here we are going to speak with him without our child. He showed us the pictures and pointed to the edges of what he said was a large mass, it covered the whole area I was expecting to see intestines it's shape was odd and had a part that jutted out right above her left hip. I was shocked at just how big it was. They told us she would need more tests to know what exactly it was but that it was a tumor. They had us go sit out in the waiting room so Rebekah could play some, I was bawling, while they called the doctor about scheduling the MRI. We left after being told we would get a call about when to come up to Primary Children's in the morning for a sedated MRI and that she could have nothing to eat or drink after midnight. When we got home we told Shawn's mother what was going on I called my dad and let him know they had found a tumor ( I couldn't say the "c word"). I sent texts to a couple friends who had been helping me cope with the "constipation" and called my Relief Society president and left her a message that I would like to be released because I wasn't sure I would be able to do my calling as a teacher. Shawn went to gas up the car and grab us all some dinner, Arby's, one of Rebekah's favorites. As we were eating we got a call from Rebekah's doctor and he tells us that the CT scan showed a big blood clot in the large vein going from the leg into the heart and that we need to pack a few things and come into Primaries tonight and go straight up to the 4th floor some unit called ICS and that we would be met by a Dr. Sato, so we could bypass the ER. We call Shawn's sister back to stay with our kids, toss some stuff in a bag and leave the other children to head up to a hospital neither of us knows how to get to (thank goodness for smart phones). Shawn dropped us off at the main entrance and went to park the car. Rebekah and I head in and ask the guard sitting at the desk where ICS is, she stands quickly and points to the elevator and says 4th floor head left after you get off push the button to open the doors and pick up the phone in the room but asks nothing of us in fact she seems to be thinking we should be hurrying faster then we are. As we come into the little man trap as Shawn calls it someone is leaving so we just walk in, there is a cute little pregnant nurse sitting behind a counter and I say, "we were told to met Dr Sato." She looks at us and says, "this must be Rebekah let me take you to your room." It was about 7pm and our nurse Eric got us settled in, took her vitals put her ID bracelet that was already made on, and let us know that he was only there for us, I have never heard of a nurse having just one patient before. Dr. Sato came in an introduced herself, let us know she and a group of other doctors had been looking at her CT scan and ultrasounds and that the clot looked old and would not likely cause a problem but that we would stay overnight and the MRI would be the next day. After she left other members of Rebekah's Team came and talked to us about things each of their specialties would bring to her diagnosis and immediate treatment. A pediatric surgeon came and talked about the options for biopsy and said she would be doing one or the other based on what she was feeling when she got in there. A Urologist came and talked about what his colleague Dr. Si ( sounds like sigh) would likely do to address the kidney swelling ,a sent being the best option but not knowing if it would be able to be placed at all. And Luke, her Oncologist, came to talk about what the biopsy might reveal. Some of these doctors came in several times and one of them wrote up an order for morphine, we didn't know till she had been in pain for a long while, we were waiting for the time to give ibuprofen again and Eric mentioned that she could have the morphine in the interim. It feels weird to say yes, please give her the morphine after only giving her ibuprofen at home and sending her back to bed when she would get up in the night complaining of leg pain. Once she got he morphine she actually slept without squirming around and making fussy sounds for the first time in weeks. But that only last for a little while. She really need to go pee but couldn't get it out so at 4am we had the nurse place a catheter, which was very difficult for everyone in the room. but once it was in it drained quite a bit of fluid before it just stopped draining and Rebekah became so uncomfortable Shawn dashed out and brought back a nurse to take it out. It was decided by about 7:30 that Rebekah wouldn't be having the MRI but instead would have a biopsy, port placement, bone marrow aspiration, scopeing of the bladder and vagina, and hopefully placement of a stent and a larger catheter all done as one surgery so she wouldn't have to be sedated more then once that day, (they have a rule about that). One of the urologists came and talked to us about what would happen if they couldn't place the stent it involved placing a tube through her back directly into the kidney (so glad that didn't have to happen). We were scheduled for around noon to start the surgery, everything went at least as well as expected even if it did take longer then we thought it might Dr. Si pulled off something of a miracle that was the talk of the hospital for days with the way he placed her stent, he even seemed pretty pleased with himself when he came out to tell us. My baby had had her first IV, her second IV and her first very major surgery all in 24 hours.
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