I wrote this on Tuesday, just didn't post it.
It's been one of those days. I've already had 3 Diet Dr Peppers.
It started out without sleep because JP and Elsie decide to either sleep completely through the night or to take turns waking up so I'm up with somebody every 1-2 hours. Last night was awful and JP was up for the day by 7:15. Ugh.
I try to talk about JP's cancer randomly throughout our days or weeks so that he isn't scared of it and that he might feel comfortable enough when he's a bit older that he can ask questions about it and not have to feel like it's a terribly sad topic to bring up. Every day in family prayers we pray for JP to have the strength to continue fighting his cancer, when we give him his medicine we explain that it will help him to feel better because his leukemia is what makes him feel sick. He's not scared to go to the hospital, in fact he almost seems to look forward to it. He knows when we drop Elsie off at the neighbor's that we're going to see "mine doctors!" This morning we were sitting in the car and JP yelled out "MOM! I DON'T LIKE CANCER!!!" I choked up and told him, "I don't like it either, buddy. In fact, Mommy hates cancer." Is that bad? I guess I think it's fine to express that I hate cancer, maybe I shouldn't. He doesn't really understand what it is or even what it is to hate something. I don't know. Like I said, it's been one of those days.
Saturday, April 28, 2012
Thursday, April 19, 2012
Consolidation - Day 15
Treatment this week was supposed to be quick and easy, with "supposed to be" the key phrase here.
We were literally scheduled for our least busy day - meaning we only had a clinic visit and a lumbar puncture scheduled. Clinic was at 8:30 and was just going to be labwork and a check up with the doctor. No IV chemo, no added medications, nothing. Just a check up to see where his numbers are. Unfortunately, we got to clinic and JP's port would not access. We could get it to flush and allow fluids into his bloodstream but couldn't get any blood to return. This is the essential part of our visits - to get bloodwork! Without blood, this is a difficult thing to do! Dr. Lemons called down to RTU to see if they could squeeze us in earlier than our 10:30 appointment (they said they could) and he ordered TPA up to clinic so that we could have the LP then head back upstairs. TPA is a drug used to help unclot any blood that may have gotten into the line blocking it from being drawn. About 9:00 we headed down for JP's LP. Good thing we went early, because they didn't take us back until almost 11:00! Oh well, they said they had some complications with earlier procedures and even though we were bugged that we sat around and waited for what seemed like forever, I reminded myself that I'm grateful things are going along well and we're not having many complications, aside from the port access trouble, of course. Overall, JP is responding to treatment just like he should be and every surgery has gone well. We could be singing a very different song right now so I'm just grateful for every day that we are healthy and doing well.
We finished at RTU about 12:30. By this time, I called Shelly to see how Elsie was doing and to let her know we were not going to be back as soon as we thought. We went back upstairs where the nurse hooked up the TPA and put it into JP's line. The trick with TPA is that it has to sit for 30 minutes at a time. The first time we tried it was no good so we had to wait another 30 minutes. We decided I better go pump and drop some more milk off because Elsie had already finished off what I had left for her and we didn't know how much longer we were going to be. While I was gone, they were able to get the line to work and finally got some blood return. Phew! This port has been finicky since it was put in - the surgeon told us it took him 2 or 3 times longer to do than it usually does, and every time we've tried to draw from it it seems to be picky. It's very positional, like if JP isn't sitting up super straight it usually won't pull. Last week the nurse tried for 5 minutes before it finally worked. It's supposed to be a permanent line for the next 3 years throughout treatment and I really hope we don't have to have it redone. That would be awful. We finally got home around 3:00, our longest outpatient day at the hospital yet - 7 hours! Again, I'm just grateful that besides this little hiccup, things seem to be going well. He's our happy little boy when we're at home and his numbers continue to be where they should be.
We were literally scheduled for our least busy day - meaning we only had a clinic visit and a lumbar puncture scheduled. Clinic was at 8:30 and was just going to be labwork and a check up with the doctor. No IV chemo, no added medications, nothing. Just a check up to see where his numbers are. Unfortunately, we got to clinic and JP's port would not access. We could get it to flush and allow fluids into his bloodstream but couldn't get any blood to return. This is the essential part of our visits - to get bloodwork! Without blood, this is a difficult thing to do! Dr. Lemons called down to RTU to see if they could squeeze us in earlier than our 10:30 appointment (they said they could) and he ordered TPA up to clinic so that we could have the LP then head back upstairs. TPA is a drug used to help unclot any blood that may have gotten into the line blocking it from being drawn. About 9:00 we headed down for JP's LP. Good thing we went early, because they didn't take us back until almost 11:00! Oh well, they said they had some complications with earlier procedures and even though we were bugged that we sat around and waited for what seemed like forever, I reminded myself that I'm grateful things are going along well and we're not having many complications, aside from the port access trouble, of course. Overall, JP is responding to treatment just like he should be and every surgery has gone well. We could be singing a very different song right now so I'm just grateful for every day that we are healthy and doing well.
We finished at RTU about 12:30. By this time, I called Shelly to see how Elsie was doing and to let her know we were not going to be back as soon as we thought. We went back upstairs where the nurse hooked up the TPA and put it into JP's line. The trick with TPA is that it has to sit for 30 minutes at a time. The first time we tried it was no good so we had to wait another 30 minutes. We decided I better go pump and drop some more milk off because Elsie had already finished off what I had left for her and we didn't know how much longer we were going to be. While I was gone, they were able to get the line to work and finally got some blood return. Phew! This port has been finicky since it was put in - the surgeon told us it took him 2 or 3 times longer to do than it usually does, and every time we've tried to draw from it it seems to be picky. It's very positional, like if JP isn't sitting up super straight it usually won't pull. Last week the nurse tried for 5 minutes before it finally worked. It's supposed to be a permanent line for the next 3 years throughout treatment and I really hope we don't have to have it redone. That would be awful. We finally got home around 3:00, our longest outpatient day at the hospital yet - 7 hours! Again, I'm just grateful that besides this little hiccup, things seem to be going well. He's our happy little boy when we're at home and his numbers continue to be where they should be.
Telling me "Peace out, Mom!"
Seriously, Mom? Don't you have enough pictures?
Ugh, stop already!
Fine, I'll cheese. Just so you'll leave me alone!
Waiting at the RTU, showing off his glowing finger.
The TPA drug...
Hanging out, finally getting some food and the TPA.
As a side note, have you noticed how many acronyms I use? JP, IV, LP, TPA, RTU - sometimes I wonder if I should keep a running list on the side of our blog so everyone knows what I am talking about since it's all so normal for me to just ramble off...
Friday, April 13, 2012
Consolidation - Day 8
I realize it is Friday and we had treatment on Tuesday. Sorry!
So we started the day bright and early at 8:00 am. We had to be to clinic at 8:30 because JP was supposed to check in at the operating room at 10:15 for an 11:45 procedure. We were just doing the lumbar puncture again with the chemotherapy into his spinal fluid, but the RTU was full so they had to send us to the OR. Let's just say we are so grateful for the RTU! We had one of our longest days at the hospital, yet the least amount of "stuff" done.
At clinic they have this table set up for the kids to do crafts while they wait. JP always looks forward to this, probably because it's the only place I've let him use "sizzizz" (scissors). This week he made a beautiful flower for his Elsie girl and drew some cool trucks with his daddy.
One thing I love about Primary Children's is their Child Life Specialists. They are basically the toy specialists. They have access to any toy imaginable and their sole job is to make sure each child has something to play with that will make them smile while in the hospital. JP took a bit to warm up to our CLS, but I think a lot of that had to do with the steroids he was on. Now he likes when she pops in the room because he knows she's about to bring out an awesome race track. I think if I were to do it all over, I might like being a CLS. I don't think it would be easy seeing kids with life threatening diseases day in and day out, but I think it must be so rewarding being able to see these kids smile for just a little bit while they are going through yucky procedures.
Sometimes JP only cares about the iPad (who can blame him) or taking random pictures and self-portraits with our camera. He gets that from Colette. Here's some of his finest work from Tuesday:
Other times JP likes to hide in his dad's arms and then scare me when I'm least expecting it. Fortunately for me, I happened to be holding the camera waiting for the scare this time!
Here's our cute kiddo getting ready for the OR. When we go to the RTU, it's so quick and easy. We get vitals done then they take him back, put him to sleep, do the procedure and we're back with him helping him wake back up and this all happens within about an hour. He doesn't even have to change his clothes! This week, we checked in at 10:15, were taken back to a room, saw a few doctors, got a new outfit on and waited until 12:15 when they took him back. At about 1:00 we were with him waking up but it was almost 2:00 before we left the hospital. Ugh, almost 4 hours to do what only takes 1 - 1.5 hours in RTU. We are so happy we are in RTU next week! One of the doctors even told us they hate when one of the "Onc" kids (oncology) has to come through because it's so much more time consuming for such a simple procedure. We totally agree!
When we got home, we had some angel mail waiting for us and JP was pretty happy most of the day. He hasn't really been eating but that is a side effect of taking oral chemo every day. He feels yucky and doesn't want to put food in his tummy because it already doesn't feel good. His favorite food this week is chips and salsa, we really struggle getting him to eat anything else. At least he's asking for apple juice, chocolate milk and Sprite so he's getting a few calories...
And finally, just a cute picture of both kids totally engrossed in a puzzle JP is doing on his iPad. JP always says, "Elsie sit by me!" or "Elsie watch me!" so she is sitting or laying next to her brother more often than not. I love it.
So we started the day bright and early at 8:00 am. We had to be to clinic at 8:30 because JP was supposed to check in at the operating room at 10:15 for an 11:45 procedure. We were just doing the lumbar puncture again with the chemotherapy into his spinal fluid, but the RTU was full so they had to send us to the OR. Let's just say we are so grateful for the RTU! We had one of our longest days at the hospital, yet the least amount of "stuff" done.
At clinic they have this table set up for the kids to do crafts while they wait. JP always looks forward to this, probably because it's the only place I've let him use "sizzizz" (scissors). This week he made a beautiful flower for his Elsie girl and drew some cool trucks with his daddy.
One thing I love about Primary Children's is their Child Life Specialists. They are basically the toy specialists. They have access to any toy imaginable and their sole job is to make sure each child has something to play with that will make them smile while in the hospital. JP took a bit to warm up to our CLS, but I think a lot of that had to do with the steroids he was on. Now he likes when she pops in the room because he knows she's about to bring out an awesome race track. I think if I were to do it all over, I might like being a CLS. I don't think it would be easy seeing kids with life threatening diseases day in and day out, but I think it must be so rewarding being able to see these kids smile for just a little bit while they are going through yucky procedures.
Sometimes JP only cares about the iPad (who can blame him) or taking random pictures and self-portraits with our camera. He gets that from Colette. Here's some of his finest work from Tuesday:
Dad checking the Braves score:
Mom looking her best:
And the one-armed shot:
Other times JP likes to hide in his dad's arms and then scare me when I'm least expecting it. Fortunately for me, I happened to be holding the camera waiting for the scare this time!
Here's our cute kiddo getting ready for the OR. When we go to the RTU, it's so quick and easy. We get vitals done then they take him back, put him to sleep, do the procedure and we're back with him helping him wake back up and this all happens within about an hour. He doesn't even have to change his clothes! This week, we checked in at 10:15, were taken back to a room, saw a few doctors, got a new outfit on and waited until 12:15 when they took him back. At about 1:00 we were with him waking up but it was almost 2:00 before we left the hospital. Ugh, almost 4 hours to do what only takes 1 - 1.5 hours in RTU. We are so happy we are in RTU next week! One of the doctors even told us they hate when one of the "Onc" kids (oncology) has to come through because it's so much more time consuming for such a simple procedure. We totally agree!
When we got home, we had some angel mail waiting for us and JP was pretty happy most of the day. He hasn't really been eating but that is a side effect of taking oral chemo every day. He feels yucky and doesn't want to put food in his tummy because it already doesn't feel good. His favorite food this week is chips and salsa, we really struggle getting him to eat anything else. At least he's asking for apple juice, chocolate milk and Sprite so he's getting a few calories...
And finally, just a cute picture of both kids totally engrossed in a puzzle JP is doing on his iPad. JP always says, "Elsie sit by me!" or "Elsie watch me!" so she is sitting or laying next to her brother more often than not. I love it.
Monday, April 9, 2012
What we've been up to
We've been out to dinner...
Acted silly...
Cleaned a "new" green chair Mommy bought...
Visited the zoo... Obviously Elsie was thrilled about that!
Took a combined bath...
Got more Angel Mail...
And got to go to church! It was only for sacrament and JP wore his mask the entire time! We got there about 10 minutes early, sanitized the whole bench, kept to ourselves and made a quick getaway when it was over. It really was nice to be a family at church again, even if it was only for an hour.
Tuesday, April 3, 2012
Consolidation - Day 1
Yesterday we had Home Health come out and draw some labs from JP to make sure he was healthy enough to start the next phase of treatment which they call Consolidation. His numbers all looked good so they had us go to clinic today. Before we went into clinic, there was a photographer at PCMC taking pictures of the cancer kiddos to get some shots for advertising for the CureSearch walk in September. I don't think they will use any of JP, the little stink would not smile! It's not really like him to not smile - the kid is such a ham when a camera comes out! Obviously, just browse through our blog! Even when he's not been feeling well he almost always has time to cheese it. Oh well, we still got a bunch of great scowl shots for free.
At clinic they did the usual lab work and check-up and followed that with the chemotherapy Vincristine - the same chemo we had each week in Induction. We were then sent down to the RTU for his lumbar puncture where they put more chemotherapy into his spinal fluid. We will do this same routine for two more weeks on days 8 and 15. After getting the LP, we were sent home with our first prescription chemotherapy drug called Mercaptopurine. It's a little bit scary - the medicine came in a sealed bag with a bunch of warnings and a whole page of instructions like "the one prescribed this medicine should be the only one handling the medicine if at all possible" and "wear gloves when handling medication and wash your hands after taking gloves off" and "if any of this medication gets on your skin, flush with soap and large amounts of water and if skin is still red after one hour go to the emergency room" and "while using the medication, and for 48 hours after, take extra care when handling bodily fluids" and "change diapers often to reduce the time fluids are in contact with skin" and "pregnant or breastfeeding women should NOT handle medication." Oops, read that one after giving JP his medicine tonight. We get to be on this medicine daily for 4 weeks and then hopefully will move into the next phase, assuming his numbers continue to look good.
We came home expecting JP to be wiped out - he usually is on chemo days - but he was all sorts of silly! Running around, giggling, chasing his dogs, playing games, dancing, you name it! He really is such a fun child, and I love that he is so oblivious to the serious nature of his medical situation. He definitely cheers us up way more than we need to cheer him up.
Speaking of cheering up, did you get a chance to hear some of the talks from General Conference last weekend?? Elders Nelson and Rasband wrote their talks just for us. Elder Nelson talked about the body and how it has this incredible ability to heal itself and Elder Rasband - my gosh he just spoke like he knew we were just diagnosed and knew that we were relying heavily on trusting in the Lord and our faith in His knowledge of us and our situation. He said something about there being many questions and few answers and we simply rely on our Savior's atonement to hold us up. He said President Faust had said, "I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child.” Ok, seriously? Who wrote Elder Rasband and told him about us?? I had recorded conference and I had to keep pausing it to wipe my eyes before moving forward so I could see straight. I know that our Heavenly Father is aware of us and I know that our Savior knows the pain we feel because of JP's cancer and our inability to take it away from him. He will not leave us comfortless - we know this firsthand. It really is amazing that we do not know the outcome, but we feel at peace because of a loving Father in Heaven and our faith in His plan.
At clinic they did the usual lab work and check-up and followed that with the chemotherapy Vincristine - the same chemo we had each week in Induction. We were then sent down to the RTU for his lumbar puncture where they put more chemotherapy into his spinal fluid. We will do this same routine for two more weeks on days 8 and 15. After getting the LP, we were sent home with our first prescription chemotherapy drug called Mercaptopurine. It's a little bit scary - the medicine came in a sealed bag with a bunch of warnings and a whole page of instructions like "the one prescribed this medicine should be the only one handling the medicine if at all possible" and "wear gloves when handling medication and wash your hands after taking gloves off" and "if any of this medication gets on your skin, flush with soap and large amounts of water and if skin is still red after one hour go to the emergency room" and "while using the medication, and for 48 hours after, take extra care when handling bodily fluids" and "change diapers often to reduce the time fluids are in contact with skin" and "pregnant or breastfeeding women should NOT handle medication." Oops, read that one after giving JP his medicine tonight. We get to be on this medicine daily for 4 weeks and then hopefully will move into the next phase, assuming his numbers continue to look good.
We came home expecting JP to be wiped out - he usually is on chemo days - but he was all sorts of silly! Running around, giggling, chasing his dogs, playing games, dancing, you name it! He really is such a fun child, and I love that he is so oblivious to the serious nature of his medical situation. He definitely cheers us up way more than we need to cheer him up.
Speaking of cheering up, did you get a chance to hear some of the talks from General Conference last weekend?? Elders Nelson and Rasband wrote their talks just for us. Elder Nelson talked about the body and how it has this incredible ability to heal itself and Elder Rasband - my gosh he just spoke like he knew we were just diagnosed and knew that we were relying heavily on trusting in the Lord and our faith in His knowledge of us and our situation. He said something about there being many questions and few answers and we simply rely on our Savior's atonement to hold us up. He said President Faust had said, "I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child.” Ok, seriously? Who wrote Elder Rasband and told him about us?? I had recorded conference and I had to keep pausing it to wipe my eyes before moving forward so I could see straight. I know that our Heavenly Father is aware of us and I know that our Savior knows the pain we feel because of JP's cancer and our inability to take it away from him. He will not leave us comfortless - we know this firsthand. It really is amazing that we do not know the outcome, but we feel at peace because of a loving Father in Heaven and our faith in His plan.
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