(Literally!) I had to scoop Isaac's poop from his diaper earlier this a.m.
I ran it down to the lab pronto, only to be told that we need more POOP! The nurse at CHOC only gave me 1 cup for the 3 tests, but we needed more. The lab lady gave me one more cup for frozen poo, and 1 tubular vial filled with red liquid.
So. We wait. C'mon poo! (Never thought I would be looking forward to poop, especially since I have to dig through it.)... OOOOOOHHH! I just realized she did not give me any additional scoopers! Guess I have to get crafty.
Thursday, January 21, 2010
Wednesday, January 20, 2010
Chemo treatment #3 down - 16 more to go
Another 4:00 p.m. appointment. EMLA was applied at 2:35 p.m., and myself and Mr. Man were on the rainy road by 2:50 p.m.
We arrived at CHOC at 3:40 p.m. (Thank you crazy, rainy freeway! So much for my idea of leaving later...) Isaac cried once the car turned off, and I smelled an all too familiar smell - poop. I grabbed him from the back and layed him down on the passenger seat to change him. Not an easy task, let me tell you. (Don't tell Daddy that we got poopies on the leather, please). We finished up, and got out of the car. Threw away the diaper (a mistake.. will explain later..) and went inside the OPI (Outpatient Infusion) clinic, 2nd floor. There is usually a lady sitting right in front of the hallway, behind a table that has masks, hand sanitizer, and other goodies - but she wasn't there. She doesn't allow anyone to pass without knowing the who, when, why and what - and cleaning your hands via sanitizer. (Maybe she didn't want to come out in the rain?)... So, I had to dig deep into Isaac's diaper bag and pull out a clean mask. Got the mask on the squirmy worm, and off down the hall we went.
Walked up to the desk. We don't even have to sign in. They say, "Hi, Isaac!" and wisk us away into the isolation "closet". We got a bigger, upgraded "closet" today, yeah!
Nurse takes vitals. His BP reading was 148/74. Great. She measured it again, and it was 116/66. Still a tad high for a 9-month-old.
She takes his height... by laying him on the half reclined chair, and marking from head to toe. 29 1/4 inches (+/-) Close enough! We then exit our "closet" and walk down to the scale. Surprisingly, masked Isaac does not scream on the way there. Weight: 9.6 kg. He is down a few ounces from last Wednesday. He whines a bit on the way back. (Darn mask!)
Wait for bit, then the nurse comes in and asks if the doctor has been in yet. "Nope!"
Wait a bit longer, and doctor comes in. This time we saw a lady, I am guessing a NP, by the name of Mary.
She asks if they have contacted me for the kidney ultrasound, and I reply, "No, they have not." Oops. Apparently, they were supposed to contact me last week to schedule an appointment. It is a STAT ultrasound, so she was a little irritated that I did not receive a call. She lets me know that I WILL be receiving a call today to schedule. She is concerned about his blood pressure, and I mention that I *think* he still may be having headaches because he is still holding his head, but now he has been banging it (his head) against random objects. She asks the nurse to come back in to check it - 88/60 - better!
To be 100 percent honest, I am freaked about this ultrasound. The last time he had a kidney ultrasound, I was told he had cancer. I am scared that the blood flow to his remaining kidney is not adequate, resulting in his high blood pressure. It is so hard to think positive, but I know I need to, for my sake, but mostly for Isaac. Isaac has also been having diarrhea. She asks when the last time he had a bowel movement. I told her a while ago, in the car. She asks for the diaper. Doh! "I threw it away!" I guess I should have kept it, but who'd have known. That thing was stinky and I wanted to get rid of it A.S.A.P. Carrying it around in his diaper bag was not on my mind at that point. So, they send me off with a cup to take a sample from home and deliver it to our local laboratory, STAT. One of the very common side effects of chemo is constipation. They even send you home with stool softeners. For some unknown reason, Isaac's stools are the total opposite. They are doing 3 tests: stool culture, stool cdiff, and stool rota virus.
She sends the nurse in to access his port and draw labs, but advises her to hold off on the Vincristine (V). She then leaves and says she will be back.
Nurse comes in with her box of tricks. (This is what chemo "looks" like. The syringe at the top with the white label, and the 'toxic' green label is Vincristine - The liquid is clear. The 2 white syringes are saline, and the yellow syringe is Heparin).
By this point, it has been a little over 2 hours since we applied EMLA. The cream was seeping through the top of the Tegaderm-Film that we place over it, and was nearly 100% absorbed. I was starting to get a little worried. I have a huge fear of Isaac feeling the needle that enters his chest. I mentioned this to her, and she assured me that it lasts a good 4 hours after applied. Ok. She accesses his port, and thankfully, not a flinch. She draws blood for his routine labwork, places a nice little comfy film over his port (needle, and line hanging freely) and leaves. We wait for a good 25 minutes, and finally Mary peeks back in to let me know that we definitely need to get the ultrasound done, and check his poopies - but we are good to go.
Nurse is back, and finishes what she started and pumps him full of V. He actually did very well this time, with minimal squirming! Removes the line, and places a Spiderman bandaid over his port.
Next appointment is on Tuesday to draw labs. If his counts come back too low, then they will call me and let me know it's a "no-go". Otherwise, we will be back in the OPI on Wednesday for V AND the dreaded A.
We arrived at CHOC at 3:40 p.m. (Thank you crazy, rainy freeway! So much for my idea of leaving later...) Isaac cried once the car turned off, and I smelled an all too familiar smell - poop. I grabbed him from the back and layed him down on the passenger seat to change him. Not an easy task, let me tell you. (Don't tell Daddy that we got poopies on the leather, please). We finished up, and got out of the car. Threw away the diaper (a mistake.. will explain later..) and went inside the OPI (Outpatient Infusion) clinic, 2nd floor. There is usually a lady sitting right in front of the hallway, behind a table that has masks, hand sanitizer, and other goodies - but she wasn't there. She doesn't allow anyone to pass without knowing the who, when, why and what - and cleaning your hands via sanitizer. (Maybe she didn't want to come out in the rain?)... So, I had to dig deep into Isaac's diaper bag and pull out a clean mask. Got the mask on the squirmy worm, and off down the hall we went.
Walked up to the desk. We don't even have to sign in. They say, "Hi, Isaac!" and wisk us away into the isolation "closet". We got a bigger, upgraded "closet" today, yeah!
Nurse takes vitals. His BP reading was 148/74. Great. She measured it again, and it was 116/66. Still a tad high for a 9-month-old.
She takes his height... by laying him on the half reclined chair, and marking from head to toe. 29 1/4 inches (+/-) Close enough! We then exit our "closet" and walk down to the scale. Surprisingly, masked Isaac does not scream on the way there. Weight: 9.6 kg. He is down a few ounces from last Wednesday. He whines a bit on the way back. (Darn mask!)
Wait for bit, then the nurse comes in and asks if the doctor has been in yet. "Nope!"
Wait a bit longer, and doctor comes in. This time we saw a lady, I am guessing a NP, by the name of Mary.
She asks if they have contacted me for the kidney ultrasound, and I reply, "No, they have not." Oops. Apparently, they were supposed to contact me last week to schedule an appointment. It is a STAT ultrasound, so she was a little irritated that I did not receive a call. She lets me know that I WILL be receiving a call today to schedule. She is concerned about his blood pressure, and I mention that I *think* he still may be having headaches because he is still holding his head, but now he has been banging it (his head) against random objects. She asks the nurse to come back in to check it - 88/60 - better!
To be 100 percent honest, I am freaked about this ultrasound. The last time he had a kidney ultrasound, I was told he had cancer. I am scared that the blood flow to his remaining kidney is not adequate, resulting in his high blood pressure. It is so hard to think positive, but I know I need to, for my sake, but mostly for Isaac. Isaac has also been having diarrhea. She asks when the last time he had a bowel movement. I told her a while ago, in the car. She asks for the diaper. Doh! "I threw it away!" I guess I should have kept it, but who'd have known. That thing was stinky and I wanted to get rid of it A.S.A.P. Carrying it around in his diaper bag was not on my mind at that point. So, they send me off with a cup to take a sample from home and deliver it to our local laboratory, STAT. One of the very common side effects of chemo is constipation. They even send you home with stool softeners. For some unknown reason, Isaac's stools are the total opposite. They are doing 3 tests: stool culture, stool cdiff, and stool rota virus.
She sends the nurse in to access his port and draw labs, but advises her to hold off on the Vincristine (V). She then leaves and says she will be back.
Nurse comes in with her box of tricks. (This is what chemo "looks" like. The syringe at the top with the white label, and the 'toxic' green label is Vincristine - The liquid is clear. The 2 white syringes are saline, and the yellow syringe is Heparin).
By this point, it has been a little over 2 hours since we applied EMLA. The cream was seeping through the top of the Tegaderm-Film that we place over it, and was nearly 100% absorbed. I was starting to get a little worried. I have a huge fear of Isaac feeling the needle that enters his chest. I mentioned this to her, and she assured me that it lasts a good 4 hours after applied. Ok. She accesses his port, and thankfully, not a flinch. She draws blood for his routine labwork, places a nice little comfy film over his port (needle, and line hanging freely) and leaves. We wait for a good 25 minutes, and finally Mary peeks back in to let me know that we definitely need to get the ultrasound done, and check his poopies - but we are good to go.
Nurse is back, and finishes what she started and pumps him full of V. He actually did very well this time, with minimal squirming! Removes the line, and places a Spiderman bandaid over his port.
Next appointment is on Tuesday to draw labs. If his counts come back too low, then they will call me and let me know it's a "no-go". Otherwise, we will be back in the OPI on Wednesday for V AND the dreaded A.
Monday, January 18, 2010
If you find his appetite, please let us know!
Poor little dude is NOT interested in FOOD. He looks at it with such disgust! There are very few things that he will even allow near his mouth, which include, and ARE limited to the following: flour tortillas, yogurt, cheese, pinto beans, and mashed up bananas. Really, it is a hit and a miss.
He does not like any sort of 100% juice, but will drink an occasional bottle of Gatorade and definitely will chug down his formula. (Thankfully!) He is still at his current weight of 21-pounds, so I guess we are not doing too bad.
To date, he has vomited 4 times, and each of those times was while or after he finished a meal/bottle.
I read, and I truly believe that cancer children should not be limited to what they eat. If they want a banana split for brekkie - hey, go for it. Calories first, nutrition second. The after effects, and bad forming habits can be fixed later! I am willing to feed him candy and cake if it will make him happy - to an extent, that is. : )
He does not like any sort of 100% juice, but will drink an occasional bottle of Gatorade and definitely will chug down his formula. (Thankfully!) He is still at his current weight of 21-pounds, so I guess we are not doing too bad.
To date, he has vomited 4 times, and each of those times was while or after he finished a meal/bottle.
I read, and I truly believe that cancer children should not be limited to what they eat. If they want a banana split for brekkie - hey, go for it. Calories first, nutrition second. The after effects, and bad forming habits can be fixed later! I am willing to feed him candy and cake if it will make him happy - to an extent, that is. : )
THE Chemo Cocktail
For a better understanding of all this madness...
Isaac will be receiving chemo for a total of 22 weeks (7 cycles - 3 weeks per cycle - day 1 being surgery day), with the last 3 weeks being drug free and considered a "recovery period". Before cycle 5/week 13, Isaac will be scheduled for a routine CT scan to be sure we are in the clear and there is NED. (No evidence of disease).
He will be on a combination of two chemotherapy drugs:
Vincristine and Dactinomycin (Actinomycin-D)
Vincristine = V
Dactinomycin = A
Every week, Isaac will receive V.
Every 3rd week, Isaac will receive both V & A.
Our current Chemo day is Wednesday's. This day may change somewhere down the road, since his blood counts are determined on whether he will receive chemo that week or not. If his counts are too low, they will postpone a few days to a week to allow his counts to replenish.
After treatment, Isaac will receive long-term follow up care, which includes CT scans every 3 months for the first 2 years, then every 6 months for the following 2 years, then every year thereafter. He will also require additional testing, such as abdominal ultrasounds, xrays, blood tests, urine tests, etc.
Isaac will be receiving chemo for a total of 22 weeks (7 cycles - 3 weeks per cycle - day 1 being surgery day), with the last 3 weeks being drug free and considered a "recovery period". Before cycle 5/week 13, Isaac will be scheduled for a routine CT scan to be sure we are in the clear and there is NED. (No evidence of disease).
He will be on a combination of two chemotherapy drugs:
Vincristine and Dactinomycin (Actinomycin-D)
Vincristine = V
Dactinomycin = A
Every week, Isaac will receive V.
Every 3rd week, Isaac will receive both V & A.
Our current Chemo day is Wednesday's. This day may change somewhere down the road, since his blood counts are determined on whether he will receive chemo that week or not. If his counts are too low, they will postpone a few days to a week to allow his counts to replenish.
After treatment, Isaac will receive long-term follow up care, which includes CT scans every 3 months for the first 2 years, then every 6 months for the following 2 years, then every year thereafter. He will also require additional testing, such as abdominal ultrasounds, xrays, blood tests, urine tests, etc.
Thursday, January 14, 2010
Wednesday, January 13, 2010
Chemo treatment #2 down - 17 more to go
Today's appointment was at 4:00 p.m. It is very difficult to schedule accordingly, given the fact that the other kiddos school schedules are hectic. Izabella and Sheldon go in from 7:45 a.m. - 12:50 p.m. on Wednesday's and Alexis goes from 12:00 p.m. to 3:00 p.m. So, I have a tiny window in the morning, but given that CHOC is 30 miles away, and the earliest appointment is at 10:30 a.m. it is impossible to get there and back in time to drop off Lexie / pick up the other 2. I removed Alexis from Pre-K early, and dropped them off with Auntie. I apply EMLA, and Mommy and Isaac jump on the freeway at 2:50 p.m.
We arrive at Children's at 3:30 p.m. with some time to spare, so I just sat in the car and let Isaac sleep a bit. Didn't I get there 30 minutes early last week, too? Hmm.. maybe I should leave later! ; )
I took Isaac in his old infant carseat, and covered the top with a blanket... hoping this would be easier than trying to keep a mask on him while walking to the OPI center. Yeah, sure. He screamed. He did not like being under that blanket, and most likely did not want to be in that seat equally as much. So much for my plan!
We check in, and they take us back to our room. The treatment rooms are code locked, so it feels like you are sitting in a huge closet with a chair and a flat-screen T.V. They have to enter their "5-digit" code to enter the room. The nurse takes his BP. 148/62. Great. Just great. Lately, Isaac has been holding the back of his head whining. It is very possible that his BP has been high and it is causing him to have frequent headaches. Weight check is next. We have to leave our "closet" and travel down the hall - masked, screaming Isaac in tow. He weighed in at 9.7kg. We travel back down hall - masked is ripped off at this point. A bit later, Dr. Sam Esparza comes in. (Awesome guy..) He mentions his high BP, and is going to order a kidney ultrasound to make sure the blood flow to his remaining kidney is as it should be. If the blood flow is not within normal range, it will make his BP raise. What happens in that case, I don't know. It is his only kidney he has left and that little bad boy better be in 100% working condition.
All is well, otherwise, and he gives the green light for the transfusion. Today, he receives Vincristine only. Yeah!
Good news to report - His LOH came back NEGATIVE!!
Tumor-specific loss-of-heterozygosity (LOH) for chromosomes 1p and 16q identifies a subset of Wilms' tumor patients who have a significantly increased risk of relapse and death. LOH for these chromosomal regions can now be used as an independent prognostic factor together with disease stage to target intensity of treatment to risk of treatment failure.
Nurse comes in a bit later, with her box of tricks, and starts to work on my little man. If only this child would sit still! But, what can you expect from an 8-month-old? I took along two new Hot Wheel cars that his big brother received for Christmas. (Isaac does not play with Hot Wheels, but I thought it may be a good ploy...) I had them ready to whip out once the nurse came in with his Chemo medication. Once she got there, and got ready, I took them out. She accessed his port, (not a flinch) and he looked at the cars for 3.99 seconds and forgot about them instantly. Thank goodness the port access and transfusion only takes a matter of minutes. I don't know what I would do if he had to have that needle in there any longer. My little guy is strong! It's such a struggle to hold him in place.
Wednesday's are a mixed emotion. They are a downer because I dread taking Isaac to have him pumped full of the toxic Chemo medication, but then they are one step closer to him being cancer free. It's a lose - win situation. This last week was rough for him - Thursday and Friday were great, with Saturday - Monday being the worst. He refused to eat, and was very nauseated. His mouth was sore for a few days, as well. Hoping this week is easier on his tiny body. Cancer sucks!
Sunday, January 10, 2010
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