We got to Ft worth around 9 pm Sunday night and she was happy and silly. She started complaining that her tummy hurt around 6:30 am and got some lortab. About an hour later, she puked and had a temperature of 105.5 and was saying she hurt all over. I thought, oh great she probably has the flu from going to church yesterday. Then they took her blood pressure and it was low and I knew it was another round with sepsis. They tested for flu and it came back negative, at that point I was wishing it WAs the flu, that would be better than sepsis. Especially sepsis like last month. No thank you! I was really nervous, since she was so bad last time. They tried giving her albumin and a lot of fluid but it didn't help with the bp. So they transferred her to the PICU once again. Brandon was working that day but he drove down after he got off at midnight and made it here about 430. I was so glad to see him.
They started her on dopamine and it took about all day to get the blood pressure up but then she was doing pretty well and didn't have the issues like last time. She went back to the regular floor on Wednesday and has been doing pretty well since then. We will go ahead and start the IL-2 next Monday. So now everything is just pushed back a week. as of today she is great. Eating fairly well and tolerating her feeds well. Brandon drove back home today for work but we were so glad he could be with us this week. I was especially glad that he was here to stick up for me when they implied I might have something wrong with the way I clean and change her dressing. As if I'm responsible for these sepsis's. I am sure they were asking just as a precaution but I was pretty offended and he let them know that we are far more concerned and careful about her lines than anyone. (obviously) he said I probably do a better job than most nurses. I was so happy to have him there, cause I could try and tell them that I know what I'm doing but they might not have been so convinced without him and knowing that he is knowledgable on all of it and sterile procedures. He is my hero :)
The bacteria is enterobacter which was what she had the first time. It was first cultured in her urine. It was also cultured in her urine last month when she had the pseudamonas. It has never fully cleared and we don't know it if is from her dead kidney or what the deal is but it has never cleared the urine, which then goes to the blood and she gets septic. When we go home she will stay on antibiotics to help that. Hopefully that will help and we won't keep running into this problem.
Thanks as always for your continued prayers!
Saturday, January 29, 2011
Saturday, January 22, 2011
antibodies round 2
Gracie, Chloe and I went for a pedicure today. It was gracie's first one and she loved it!! they had a fun little chair and a dvd player for the kids. She chose pink polish and a white flower.
Daddy bought roses for his girls and she was so excited that she could hold it. she kept asking if it was ok, because after a stem cell transplant, they aren't supposed to hold fresh flowers. weird huh? well, that is only til day 100 if they are well. Gracie has been doing awesome this last month. She is happy most of the time and active. She loves to laugh and play hide and seek. I have noticed a bit of moodiness this week though, and im thinking it is from the accutane but it is hard to know.we drove down thursday for a clinic appt. it is pretty crappy that we have to drive 5 hours each direction for a 1 hour appt. but they have to have the bloodwork done at their own lab since it is still in the study phase. everything has to go by their protocol, so we do it. Thursday it was snowing and there was a layer of ice underneath. We headed out at 4:30 a.m. for a 10 oclock appt. my husband was working the night shift and is usually off at 630 but they let him leave a bit early to drive us down. I was glad to have him along. we stopped by his work to pick him up and headed down the road. it took 3 hours just to get to OK City when it usually takes 1 1/2. the roads were pretty slick but the main issue was the drivers. we saw a few cars off the road and a couple crashes. then right before OK City, we got a flat tire. it was SO cold but we got the tire changed and back on the road. I was counting my blessings that he was with us! also, that the tire was on the side away from traffic, we had packed flashlights in the car, gloves and hoods, and sleeping bags(that he kneeled on) even though it sucked, we still knew we had been blessed.
we got to the appointment at 11:45 and they got us right in since I had called and told them about the tire and everything. they drew her blood and talked about the next round and said she looked great. then we were back in the car to head home. we got home at 6 and Brandon went back to work for the next night, poor thing. he didnt get much sleep but he is amazing that way.
our family scored some great deals on clearance toys at target. we donated them to the oncology floor at the hospital here. we took them up there this afternoon and it was fun to see the nurses and have them see Gracie well and happy and silly. she was dragging her favorite nurse by the hand and running down the hallways giggling. I loved watching it. tomorrow we will drive down to Texas to be admitted for round 2. it will be for 2 weeks this time. (rounds 2 and 4 are 2 weeks in patient) we are praying things go well again and ask for your prayers also. thank you so much!
Wednesday, January 12, 2011
lunch for a cure
http://www.lunchforacure.org/amazinggracie
how much do you spend on lunch? 2 bucks? 5 bucks? 10 bucks? whatever the amount may be, could you donate one days lunch money to lunchforacure.org. ?? together all our lunches can add up quickly and help save lives!!!
ABOUT NBF
The Neuroblastoma Foundation (NBF) was founded by families of children with neuroblastoma dedicated to eradicating the disease.
The NBF consists of volunteers, business people, medical professionals, researchers, and parents of children with neuroblastoma, all dedicated to ensuring that one day no other child or family enters the world of neuroblastoma. Through their collective experience they provide educational, emotional, and advocacy support to families as well as work to solicit funding for research to find a cure for neuroblastoma.
Continued progress on increasing the survival rate of neuroblastoma, reducing the serious side effects of cancer treatment, improving the quality of life during treatment, understanding the importance of genetics and its influences with environmental exposures, are all part of the continuing efforts of many of the dedicated people that make up the Neuroblastoma Foundation.
100% of the money raised through Lunch for a Cure goes towards funding for research for neuroblastoma
how much do you spend on lunch? 2 bucks? 5 bucks? 10 bucks? whatever the amount may be, could you donate one days lunch money to lunchforacure.org. ?? together all our lunches can add up quickly and help save lives!!!
ABOUT NBF
The Neuroblastoma Foundation (NBF) was founded by families of children with neuroblastoma dedicated to eradicating the disease.
The NBF consists of volunteers, business people, medical professionals, researchers, and parents of children with neuroblastoma, all dedicated to ensuring that one day no other child or family enters the world of neuroblastoma. Through their collective experience they provide educational, emotional, and advocacy support to families as well as work to solicit funding for research to find a cure for neuroblastoma.
Continued progress on increasing the survival rate of neuroblastoma, reducing the serious side effects of cancer treatment, improving the quality of life during treatment, understanding the importance of genetics and its influences with environmental exposures, are all part of the continuing efforts of many of the dedicated people that make up the Neuroblastoma Foundation.
100% of the money raised through Lunch for a Cure goes towards funding for research for neuroblastoma
accutane
Gracie's EGD showed that her stricture was ok but since he was in there anyway he dilated it a bit more. she still has esophogitis but it is much better than last time. we waited around to get her accutane and GMCSF shots before heading home. the shots were delivered to our room around 2:00 but the accutane wasnt delivered til 5. they were having trouble with the insurance but finally got it figured out. I was a bit frustrated but glad to have the meds before heading home. we made it home around 10:30 that night, it was a long day and we were glad to be home! :) Accutane is used for nodule acne. obviously Gracie doesnt have acne but it is also used to stop the growth of NB cells. weird huh? so anyway, we had to sign a bunch of papers saying she would use two types of birth control, and not give blood, and not share the medicine with anyne! LOL totally all irrelevant but that is the paperwork for the regular use of accutane. you'd think they might could do a seperate form for NB. oh well. The accutane comes in a capsule and she cant swallow it so we poke it with a needle and squueze it out into a bite of pudding and she doesnt have to taste it. She just started it yesterday and will take it twice a day for two weeks every course. a lot of people ahve asked me about the accutane so I copied the information below off the website http://www.nbhope.org
Treating Minimal Residual Disease
One of the things that makes NB so difficult to cure is the fact that even when it cannot be found through scans, lab tests, or bone marrow biopsies, the disease can still be present in very small amounts in the body. Doctors believe that this undetectable disease can sometimes smolder and grow, eventually coming back as relapsed NB, which is much harder to cure. Accutane and antibodies are two strategies that have been developed to help eradicate undetectable disease, but the two work in very different ways. Much research on vaccines against NB has been accomplished, but use after frontline therapy is a new development.
Accutane
Accutane, or 13-cis retinoic acid, is a synthetic vitamin A derivative that has been shown to stop the growth of NB cells. Accutane can cause some NB cells to mature (differentiate) into non-cancerous cells. A five-year (1991-1996) randomized study (CCG-3891) concluded that high doses of Accutane improved the event-free survival for children in remission. Since those findings were published in 1999, the use of Accutane has become widely accepted for high-risk NB.
Accutane is given by mouth in capsule form in two-week on/off cycles—the medicine is taken twice a day for two weeks, then children take no medication for two weeks. Typically, children receive Accutane over six months. In the German NB2004 protocol it is given for six months with a three-month break, and then three more months.
Accutane has many side effects, but most are mild, including dry skin, moodiness and sun sensitivity. Because some of Accutane’s side effects can be more serious, children are monitored during their Accutane treatment with regular check-ups and blood draws (particularly for calcium levels and triglycerides).
It is extremely important that pregnant women, and those who may become pregnant, follow strict safety precautions when handling Accutane, because ingestion of the drug (which can be absorbed through the skin) poses a risk of serious birth defects and deformities.
Monoclonal Antibodies
Our bodies manufacture antibodies that create an immune response to bacteria, viruses, and other foreign substances to help keep us healthy. Ordinarily, a child’s immune system will not attack NB because the cancer is a part of the child’s body. Monoclonal antibody therapy (monoclonal refers to development from one clone) uses mouse antibodies produced in the laboratory from plasma (myeloma) cells. The antibodies used in NB treatment attach to a ganglioside (a fat-sugar complex molecule) on the NB cell called GD2. Because the antibody alerts the child’s own immune system to attack the NB cell the antibody is attached to, the cancer cell is destroyed. Long-term immune response may be initiated by antibody treatments in some cases.
COG currently offers a phase III study (COG-ANBL0032) of the monoclonal antibody ch14.18 (administered with “cytokines” to augment the immune response to the antibody) to patients following completion of frontline treatment protocols that include stem cell transplant. After an early review of 226 children enrolled determined significantly higher survival with antibodies, the study was amended in April 2009 to stop randomization and allow all patients subsequently enrolled to receive the antibody. The study will continue until final accrual goal of 423 is met, and it is anticipated that ch14.18 will be part of standard treatment for all COG protocols. The ch prefix indicates the antibody is “chimeric” or part human (75%) and part mouse (25%) in its formulation. In the current European SIOP trial the use of the same antibody ch14.18 is randomized (but without the use of cytokines). Note that the similar protocol number of COG-ANBL0322 using a different but similarly named antibody, hu14.18-IL2, is a closed phase II study which was open only to children with relapsed or refractory NB. The hu prefix means the antibody is completely humanized.
Treating Minimal Residual Disease
One of the things that makes NB so difficult to cure is the fact that even when it cannot be found through scans, lab tests, or bone marrow biopsies, the disease can still be present in very small amounts in the body. Doctors believe that this undetectable disease can sometimes smolder and grow, eventually coming back as relapsed NB, which is much harder to cure. Accutane and antibodies are two strategies that have been developed to help eradicate undetectable disease, but the two work in very different ways. Much research on vaccines against NB has been accomplished, but use after frontline therapy is a new development.
Accutane
Accutane, or 13-cis retinoic acid, is a synthetic vitamin A derivative that has been shown to stop the growth of NB cells. Accutane can cause some NB cells to mature (differentiate) into non-cancerous cells. A five-year (1991-1996) randomized study (CCG-3891) concluded that high doses of Accutane improved the event-free survival for children in remission. Since those findings were published in 1999, the use of Accutane has become widely accepted for high-risk NB.
Accutane is given by mouth in capsule form in two-week on/off cycles—the medicine is taken twice a day for two weeks, then children take no medication for two weeks. Typically, children receive Accutane over six months. In the German NB2004 protocol it is given for six months with a three-month break, and then three more months.
Accutane has many side effects, but most are mild, including dry skin, moodiness and sun sensitivity. Because some of Accutane’s side effects can be more serious, children are monitored during their Accutane treatment with regular check-ups and blood draws (particularly for calcium levels and triglycerides).
It is extremely important that pregnant women, and those who may become pregnant, follow strict safety precautions when handling Accutane, because ingestion of the drug (which can be absorbed through the skin) poses a risk of serious birth defects and deformities.
Monoclonal Antibodies
Our bodies manufacture antibodies that create an immune response to bacteria, viruses, and other foreign substances to help keep us healthy. Ordinarily, a child’s immune system will not attack NB because the cancer is a part of the child’s body. Monoclonal antibody therapy (monoclonal refers to development from one clone) uses mouse antibodies produced in the laboratory from plasma (myeloma) cells. The antibodies used in NB treatment attach to a ganglioside (a fat-sugar complex molecule) on the NB cell called GD2. Because the antibody alerts the child’s own immune system to attack the NB cell the antibody is attached to, the cancer cell is destroyed. Long-term immune response may be initiated by antibody treatments in some cases.
COG currently offers a phase III study (COG-ANBL0032) of the monoclonal antibody ch14.18 (administered with “cytokines” to augment the immune response to the antibody) to patients following completion of frontline treatment protocols that include stem cell transplant. After an early review of 226 children enrolled determined significantly higher survival with antibodies, the study was amended in April 2009 to stop randomization and allow all patients subsequently enrolled to receive the antibody. The study will continue until final accrual goal of 423 is met, and it is anticipated that ch14.18 will be part of standard treatment for all COG protocols. The ch prefix indicates the antibody is “chimeric” or part human (75%) and part mouse (25%) in its formulation. In the current European SIOP trial the use of the same antibody ch14.18 is randomized (but without the use of cytokines). Note that the similar protocol number of COG-ANBL0322 using a different but similarly named antibody, hu14.18-IL2, is a closed phase II study which was open only to children with relapsed or refractory NB. The hu prefix means the antibody is completely humanized.
Thursday, January 6, 2011
Antibodies day 4
Yesterday around 4 pm Gracie started coughing a lot and couldn't stop. they did a breathing treatment but it didn't help at all like it had before. This went on for about an hour when they called the doctor and then they turnedthe rate of the antibodies down from 10 ml to 5 and waited for about 10 minutes and it didn't help any so they turned it off. About a half hour later she finally stopped coughing. They left it offfor a couple hours and restarted at the lower rate and she did just fine. So this morning they decided to do the lower rate for the whole 20 hours an it was going well until 4 pm rolled around and the coughing started. It was so weird that it was the same time. They turned it off and waited a few hours and just restarted it a couple hours ago. She has had three breathing treatments today and will keep getting them every four hours until the antibody is done. They have to stop after 20 hours regardless of if she got the whole dose. Luckily she got the whole dose the first 3 days and will get all but 15 ml of the last dose if she does well through the night. The pain has been well controlled the last three days and her blood pressure and o2 sats have been good so it is a little frustrating that this cough is such an issue. We are glad she didn't have any more serious issues.
Tomorrow morning she will have another EGD to check out her esophogitis and See if her stricture has resolved or not. If not then they will dialate it again for the 3rd time. After that we plan to head home for the weekend an come back Monday for clinic. It is a lot of driving but it is worth it to be home and be with the family.
Tomorrow morning she will have another EGD to check out her esophogitis and See if her stricture has resolved or not. If not then they will dialate it again for the 3rd time. After that we plan to head home for the weekend an come back Monday for clinic. It is a lot of driving but it is worth it to be home and be with the family.
Tuesday, January 4, 2011
Ten months
Today marks ten months since we found the tumor that was growing in her tiny little body, it seems so much longer than that!!!!
I wonder how long I will count things in months. It's just too hard to not do, every time I see the date is the 4th, it is the first thing that comes to my mind. I'm sure it will be this way for a while, maybe a long while. Who knows. I always stop and think of how far we've come and how many blessings and hardships we've had. It is overwhelming at times.
Today was the second day of infusion of ch14.18. She did very well today and didn't have a terrible amount of pain. She did have fever again but it is to be expected and the cultures from yesterday are negative. She's had a cough today and had a breathing treatment and is doing a bit better. I'm very happy with how well she did today. It was a good day :)
I wonder how long I will count things in months. It's just too hard to not do, every time I see the date is the 4th, it is the first thing that comes to my mind. I'm sure it will be this way for a while, maybe a long while. Who knows. I always stop and think of how far we've come and how many blessings and hardships we've had. It is overwhelming at times.
Today was the second day of infusion of ch14.18. She did very well today and didn't have a terrible amount of pain. She did have fever again but it is to be expected and the cultures from yesterday are negative. She's had a cough today and had a breathing treatment and is doing a bit better. I'm very happy with how well she did today. It was a good day :)
Monday, January 3, 2011
Ch14.18 course 1
We got to the hospital last night around 8 and checked into room 3005. We slept ok until around 7:30 when Gracie puked. She had been drinking a lot of water and also coughing. I told them she needed her ddavp but it was only ordered nightly instead of as needed. She finally got some around noon. The infusion started at 9 and she puked again shortly thereafter. She had also been given benadryl and Tylenol prior, and had been drinking a lot still, so it's kinda hard to say what it was from, maybe just all of it together. They alsostarted her on a continuous morphine pump for the pain.
The first couple of hours she did really well and no problems, then around 11 she got an excrutiating headache and was in so much pain, also pain in her legs. They gave her two seprrate morphine boluses on top of the continuous and she was still in a great deal of pain for at least a couple hours. After that she rested pretty well through the afternoon and woke up with a fever and more headache pain. She has been asking for a cold cloth for her head but I keep having to change it since she is so hot. She got some Tylenol after spiking her fever at 38.5 c and then puked about 20 minutes later. I think she must have puked upthe Tylenol also since her fever is up to 39.2. The infusion is almost complete for today. They run it at 5 ml/hr for thirty minutes and then 10 ml/hr for 10 hours. If her blood pressure gets too low, they will stop the infusion for a few hours nd treat the low blood pressure before starting up again. Luckily today has been ok as far as blood pressure goes and she was able to get it done in the 11 hours.
She is pretty sad about being here and misses her sister very much! I'm hoping he rest of the week goes well and she won't be in so much pain, or puking. Of course it could be much worse, obviously, but it still sucks watching her suffer. I'm glad she can rest some. Hopefully tonight will be good on her :)
The first couple of hours she did really well and no problems, then around 11 she got an excrutiating headache and was in so much pain, also pain in her legs. They gave her two seprrate morphine boluses on top of the continuous and she was still in a great deal of pain for at least a couple hours. After that she rested pretty well through the afternoon and woke up with a fever and more headache pain. She has been asking for a cold cloth for her head but I keep having to change it since she is so hot. She got some Tylenol after spiking her fever at 38.5 c and then puked about 20 minutes later. I think she must have puked upthe Tylenol also since her fever is up to 39.2. The infusion is almost complete for today. They run it at 5 ml/hr for thirty minutes and then 10 ml/hr for 10 hours. If her blood pressure gets too low, they will stop the infusion for a few hours nd treat the low blood pressure before starting up again. Luckily today has been ok as far as blood pressure goes and she was able to get it done in the 11 hours.
She is pretty sad about being here and misses her sister very much! I'm hoping he rest of the week goes well and she won't be in so much pain, or puking. Of course it could be much worse, obviously, but it still sucks watching her suffer. I'm glad she can rest some. Hopefully tonight will be good on her :)
Sunday, January 2, 2011
Day +100
Well, it is Day +100 since transplant. This is the day we have been worrying about and praying to make it to. the reason is, she had to start her new immunotherapy (ch14.18) by day +100 or she wouldnt be able to do it at all. We were so worried it would'nt happen with all of the set backs she has had and it just kept getting pushed back more and more. Talk about pushing it to the limit! we made it! Gracie and I are driving back down to Ft Worth today to be admitted tonight and start the ch14.18 in the morning. That will go for 4 days. She has the GM-CSF shots for 11 more days and also starts on accutane twice a day on the 11th, through the 24th. this is course one.
She will be discharged friday and stay at the mcdonald house til clinic the next monday. then if all is well, we will come home for 10 days before the next course. It is going to busy busy and crazy, but if all goes according to schedule she would be done the end of may. knock on wood.
Gracie keeps getting mad at me cause I say "Knock on wood" all the time now. and i will not stop. I have no intention of doing so, lol. call me supersticous, I have become so. That is the entire reason I have not updated the blog the last two weeks. Im sorry to those who check often but the last two times I was raving about how well she was doing, is when she got sepsis the next day. I really didnt want to jinx getting to day 100. call me crazy, maybe I am. :) so in the future, just assume no news is good news. that is the general case. xoxo
She will be discharged friday and stay at the mcdonald house til clinic the next monday. then if all is well, we will come home for 10 days before the next course. It is going to busy busy and crazy, but if all goes according to schedule she would be done the end of may. knock on wood.
Gracie keeps getting mad at me cause I say "Knock on wood" all the time now. and i will not stop. I have no intention of doing so, lol. call me supersticous, I have become so. That is the entire reason I have not updated the blog the last two weeks. Im sorry to those who check often but the last two times I was raving about how well she was doing, is when she got sepsis the next day. I really didnt want to jinx getting to day 100. call me crazy, maybe I am. :) so in the future, just assume no news is good news. that is the general case. xoxo
Merry Christmas and happy new year!!
We had a wonderfully wonderful Christmas at home!! Daddy had a few days off and we had a lot of time to spend as a family. It was nice to have it just be us, although we love all our family and friends so much, it was just a very special time this year for us to be on our own. We loved it and Gracie was happy and healthy! Thanks for praying for her!!
the kids never complained about getting a tree earlier cause they wanted to wait for Gracie, so we were able to go get a tree as a family a week before Christmas. Gracie enjoyed helping decorate and she got to put the star on top! :)
The week before Christmas we went down to Texas for scans and bone marrow aspirates and they were all clear and showed no evidence of disease! Her dental work went well and she had a lot of work done and has 12 crowns and many fillings. her teeth look beautiful. it took the dentist about 3 hours.
my mom and dad came up on the 28th so we could go back to texas the 30th for clincs. i took my son Shad with me since we were just staying overnight and I had already taken Chloe once. He had a good time and was very sweet to Gracie. It was good for them to have some one on one time. The 30th she had a lot of blood work done and then got her new double lumen central line, which is now on the left side. poor kid is gonna be polka dotted with scars. :) she did really well, and the 31st we went back to clinic for her first shot of GM-CSF. She has to have one for 14 days. We drove back home that day and had happy new year here at home!! she was so excited. she got tired around 10:30 so she just blew her whistle early and did some streamers and party poppers and went to bed.
the kids never complained about getting a tree earlier cause they wanted to wait for Gracie, so we were able to go get a tree as a family a week before Christmas. Gracie enjoyed helping decorate and she got to put the star on top! :)
The week before Christmas we went down to Texas for scans and bone marrow aspirates and they were all clear and showed no evidence of disease! Her dental work went well and she had a lot of work done and has 12 crowns and many fillings. her teeth look beautiful. it took the dentist about 3 hours.
my mom and dad came up on the 28th so we could go back to texas the 30th for clincs. i took my son Shad with me since we were just staying overnight and I had already taken Chloe once. He had a good time and was very sweet to Gracie. It was good for them to have some one on one time. The 30th she had a lot of blood work done and then got her new double lumen central line, which is now on the left side. poor kid is gonna be polka dotted with scars. :) she did really well, and the 31st we went back to clinic for her first shot of GM-CSF. She has to have one for 14 days. We drove back home that day and had happy new year here at home!! she was so excited. she got tired around 10:30 so she just blew her whistle early and did some streamers and party poppers and went to bed.
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