Isaac was discharged yesterday, around noon. All tests came back negative, including his blood culture. They also swabbed his nose to check for a few strains of the flu as well as RSV and those were negative, as well.
We arrived home around 1:15 pm, and by 4:00 pm, the fever had returned. I called the Oncology after hours clinic, and the on-call doctor advised me to take him back the the Emergency Room and have him re-admitted. I felt a little uneasy about taking him back, so I held off. The fever did continue through the night, but tapered off this morning. He is still a little warm, high 99's.
It is extremely frustrating. The fever could be coming from numerous sources. Alexis has been sick with a virus, complete with a fever and cough. It could also be teething... his first front tooth just popped through about a week and a half ago, and the second about to come through, too.
The downside, is that he is not drinking well. He is pushing away all of his bottles. He will take sips through a regular cup, but that is not enough.
I am waiting to see if the fever spikes, and I will call his Oncologist before they leave for the day at 4:00 pm.
Oh, and may I add... that when his line was de-accessed, the needle was bent. Thank you, E.R. nurse.
ER LABS:
Hemoglobin: 11
Platelets: 253
Tuesday, April 6, 2010
Saturday, April 3, 2010
Hot Potato + ER + Admission
Isaac developed a fever yesterday around 3:00 pm. I was out Easter shopping, and did not return until about 4:30 pm, and found Isaac and Daddy cuddling on the couch. Isaac was not feeling well, at all. I immediately put in a call to Oncology, and the on-call Oncologist called me back about 40 minutes later and advised me to take him to the Emergency Room right away, and she made a call and informed them that we were on our way.
I didn't get there until about 7:00 pm. We waited about 10-15 minutes, then he was called back.
Vitals were taken. I forgot his drug list, so I had to try to remember the gazillion prescriptions he is taking, along with all the doses. You would think they would have it in the system?
We got back into a room, and waited a bit. A male nurse comes in to access his port. A sidenote: I used to frequent another blog, Pablove. Pablo's father blogged, that if a nurse asks you what size needle they use to access the port it is a huge red flag. You can read the story here. Well, first thing the nurse asked me was, "What size needle do they use to access his port?" My first thought was, "Oh, crap." I told him that I honestly do not know. I mean the nurses on the Oncology floor obviously know what they are doing, it is a daily routine for them, and they have not told me what size needle they use. The nurse leaves to grab his supplies, and the "needle" and comes back. Sweat starts pouring instantly from my head. I got really, really nervous. We lay my little man on the table and he proceeds to access his line. I'm going to tell you. I should have listened to Pablo's Dad. I should have listened to my gut. The nurse cleans and goes to access, and totally puts the needle way to high in his port, and SIDEWAYS. Facing down. Thankfully, he did not miss, and he got good blood return, but dude. Could you not aim? He was shaking, so I knew he was as nervous as I was. Child life came in, along with another male nurse to help. I was thinking, "Man, do they really need all four of us to help with accessing a 11-month-old? The Child Life lady had a Disney Cars book, you know, the ones that have the buttons that you push when you are reading along... Every time she would push the button, Isaac would dance and bounce his belly up and down. He couldn't rock out completely because the other male nurse was holding down his legs. (Like he was going to race off the table or something...) These nurses need some serious 101 from the Oncology ladies.
After that mishap, his first dose of heavy duty antibiotics and some fluids... we were transferred by wheelchair to the Oncology floor, room 318. Isaac was not a happy camper last night, so Mommy is home tonight to get some much needed sleep. Daddy is taking over for this evening.
The bummer? Isaac spent his 1st Christmas in the hospital, and now will be spending his 1st Easter there as well.
We are hoping for a Monday morning release, if all tests come back A-OK.
I didn't get there until about 7:00 pm. We waited about 10-15 minutes, then he was called back.
Vitals were taken. I forgot his drug list, so I had to try to remember the gazillion prescriptions he is taking, along with all the doses. You would think they would have it in the system?
We got back into a room, and waited a bit. A male nurse comes in to access his port. A sidenote: I used to frequent another blog, Pablove. Pablo's father blogged, that if a nurse asks you what size needle they use to access the port it is a huge red flag. You can read the story here. Well, first thing the nurse asked me was, "What size needle do they use to access his port?" My first thought was, "Oh, crap." I told him that I honestly do not know. I mean the nurses on the Oncology floor obviously know what they are doing, it is a daily routine for them, and they have not told me what size needle they use. The nurse leaves to grab his supplies, and the "needle" and comes back. Sweat starts pouring instantly from my head. I got really, really nervous. We lay my little man on the table and he proceeds to access his line. I'm going to tell you. I should have listened to Pablo's Dad. I should have listened to my gut. The nurse cleans and goes to access, and totally puts the needle way to high in his port, and SIDEWAYS. Facing down. Thankfully, he did not miss, and he got good blood return, but dude. Could you not aim? He was shaking, so I knew he was as nervous as I was. Child life came in, along with another male nurse to help. I was thinking, "Man, do they really need all four of us to help with accessing a 11-month-old? The Child Life lady had a Disney Cars book, you know, the ones that have the buttons that you push when you are reading along... Every time she would push the button, Isaac would dance and bounce his belly up and down. He couldn't rock out completely because the other male nurse was holding down his legs. (Like he was going to race off the table or something...) These nurses need some serious 101 from the Oncology ladies.
After that mishap, his first dose of heavy duty antibiotics and some fluids... we were transferred by wheelchair to the Oncology floor, room 318. Isaac was not a happy camper last night, so Mommy is home tonight to get some much needed sleep. Daddy is taking over for this evening.
The bummer? Isaac spent his 1st Christmas in the hospital, and now will be spending his 1st Easter there as well.
We are hoping for a Monday morning release, if all tests come back A-OK.
Wednesday, March 31, 2010
Chemo treatment #13 & Scan Results
Only 9 more weeks of Chemotherapy left and 2 actual infusions. TWO infusions. Did you read that? TWO! The end IS in sight. I can see it!
Isaac did awesome today, partially because we are now out of isolation, so no more closets. No more door codes. No more claustrophobia for Mommy. We now are in little "cubby" type rooms, with small 6 foot walls dividing each room. No doors, just curtains. It sorta looks like an E.R. setting.
I took him in his blue car. We had to actually wait in the waiting room.
The nurse took us back after about 10 minutes, and got his weight. 10.8 kg (23.8 pounds)! That is the most he has ever weighed. He has been eating and drinking great, which is a blessing. He had Mommy worried crazy for the first 8 weeks. I am thankful that he has made a change in the right direction.
His other nurse came in and started his Zofran (5 mg). It dripped over 15 minutes, then Mary came in to see us. She was quite surprised to see how well he is doing. Oh, and we got the results of his scans... NED! No Evidence of Disease!! I'm so happy. He will have additional scans at the end of treatment in June, which includes an abdominal ultrasound, chest xray, CT scan and possible MRI.
After Mary left, his nurse was back to administer his Dactinomycin and Vincristine-2.
We do not have to go back for 3 weeks.
Isaac did awesome today, partially because we are now out of isolation, so no more closets. No more door codes. No more claustrophobia for Mommy. We now are in little "cubby" type rooms, with small 6 foot walls dividing each room. No doors, just curtains. It sorta looks like an E.R. setting.
I took him in his blue car. We had to actually wait in the waiting room.
The nurse took us back after about 10 minutes, and got his weight. 10.8 kg (23.8 pounds)! That is the most he has ever weighed. He has been eating and drinking great, which is a blessing. He had Mommy worried crazy for the first 8 weeks. I am thankful that he has made a change in the right direction.
His other nurse came in and started his Zofran (5 mg). It dripped over 15 minutes, then Mary came in to see us. She was quite surprised to see how well he is doing. Oh, and we got the results of his scans... NED! No Evidence of Disease!! I'm so happy. He will have additional scans at the end of treatment in June, which includes an abdominal ultrasound, chest xray, CT scan and possible MRI.
After Mary left, his nurse was back to administer his Dactinomycin and Vincristine-2.
We do not have to go back for 3 weeks.
Monday, March 29, 2010
Chemo treatment #10 + Scans
Wow. I have sure fallen behind here. Isaac has been doing so awesomely well lately, that I have had minimal time to myself! I am not complaining one bit, though. It is so great to see him back to his normal little self.
Isaac completed Chemo treatment #10 on Wednesday, March 10th. Protocol was the same - A & V followed by 100ml of fluid over 1 hour.
I am SUPER HAPPY to report that as of this Wednesday, we are 9 weeks away from the END OF CHEMOTHERAPY! There are 9 weeks left, but he only has 3 more infusions. (Since they are spaced 2 weeks apart - I explained this in my last post).
Tomorrow we go in for blood counts (I'm sure they are great!) and then Wednesday he will receive A & V2.
He underwent his mid-treatment scans on Friday, March 26th. An abdominal ultrasound was completed as well as a chest xray to check for any metastasis. My little trooper screamed through both tests. I don't blame him. He has been poked and prodded more that most 100 year olds. I have not received the results of the tests as of yet. I am hoping no news, is good news.
Isaac completed Chemo treatment #10 on Wednesday, March 10th. Protocol was the same - A & V followed by 100ml of fluid over 1 hour.
I am SUPER HAPPY to report that as of this Wednesday, we are 9 weeks away from the END OF CHEMOTHERAPY! There are 9 weeks left, but he only has 3 more infusions. (Since they are spaced 2 weeks apart - I explained this in my last post).
Tomorrow we go in for blood counts (I'm sure they are great!) and then Wednesday he will receive A & V2.
He underwent his mid-treatment scans on Friday, March 26th. An abdominal ultrasound was completed as well as a chest xray to check for any metastasis. My little trooper screamed through both tests. I don't blame him. He has been poked and prodded more that most 100 year olds. I have not received the results of the tests as of yet. I am hoping no news, is good news.
Wednesday, March 3, 2010
Chemo treatment #8 & 9 down - 10 more to go
I am running a little behind with updates!
Isaac had his chemo infusion #8 on Wednesday, February 24th. It was actually the smoothest, quickest appointment to date!
Appointment was at 1:00 p.m. We were in and out of there in 1 hour.
Weight: 9.8 kg (up .1 kg from the week prior)
He did awesome from week #7 - week #8. He ate like a champ, and poo was normal. (Yeah, and yeah!)
He received Vincristine only.
LABS:
ANC: 1,710
WBC: 5.3
Hemoglobin: 10.6
Platelets: 417
Today was chemo infusion #9. I am happy to announce that we only have 10 more to go! (Actually less, but I will explain that in a bit)...
Daddy had the day off today, so he was able to go with us. I was glad, since this was his first time he had a chance to tag along and witness first-hand how the infusion process works, and I wanted him to have a chance to ask the Oncologist any questions that he had for himself.
Once again, our appointment was set for 1:00 p.m. We arrived pretty much AT 1:00 p.m. - we are never early for anything when Daddy is with us! He is rarely ever on time for anything, so I am actually surprised we weren't late. ; )
The nurse took him straight to the scale when we "checked-in". Weight: 9.8 - Same as last week. It's okay if he maintains his weight, just as long as we don't go down.
They set us up in our regular room. Room 17.
Vitals were taken, BP: 115/68
We waited about 45 minutes to 1 hour before his primary Oncologist, Dr. Esparza, came in. It was nice to actually see him, instead of the NP. Nothing really new to report, but I did let him know that his appetite has once again come to a halt, and the diarrhea has started again. He did mention that the diarrhea most likely is due to chemo (we knew this), and it is very rare. He said that is not tolerating the chemo well, and his little body is very sensitive. We will just have to bite the bullet and get through the last several weeks of chemo, then treat as necessary when the treatment is over. He said he will give him 2-weeks after chemo is completed for his bowels to return to normal. If they do not, then they will start some invasive testing. For the meantime, we need to rid his body of whatever cancer cells are left behind, so dealing with diarrhea is on the bottom of our list for now - just as long as he stays hydrated, obviously. But, oh my gosh! These poopies are outrageous! They explode up and out every single time, like a volcano. It's crazy. His tummy must hurt, because he screams every time. He still wakes up many times through the night, crying and kicking. I make him a bottle, but for the past few nights, he has been refusing it. He drank 4 oz before his nap this morning at 10:30 am and vomited it all up shortly after. Bath time happens a few times a day, needless to say!
Another thing I mentioned was Isaac's hair growth. His hair is growing SOO fast!! He said that most likely, the chemo is killing off some of his hair follicles and the other ones are growing out of control. He does have significant thinning on the sides of his head, but look at the comparisons...
The nurse came in directly after Dr. Esparza left and started his infusion.
Here is a video of the chemo infusion process.
Click here
Since we ended Cycle 3, his infusions will be on a different schedule from here on out.
Week 10: A & V
Weeks 11 and 12: No chemo
Week 13: A & V2 (V2 is a beefed up version of V, a stronger dose).
Weeks 14 and 15: No chemo
Week 16: A & V2
Weeks 17 and 18: No chemo
Week 19: A & V2
Weeks 20-22: No chemo, resting period. END OF CHEMO.
So, technically, he has 13 more weeks of Chemo (total 22 weeks), but only 4 more (but stronger) infusions. We will still have to go weekly, though, for lab draws.
LABS:
ANC: 1,150
WBC: 4.5
Hemoglobin: 11.2
Platelets: 463
His ANC levels have dropped significantly since last week. They went from 1,710 to 1,150. A "safe" ANC is 1,500 and above.
Isaac had his chemo infusion #8 on Wednesday, February 24th. It was actually the smoothest, quickest appointment to date!
Appointment was at 1:00 p.m. We were in and out of there in 1 hour.
Weight: 9.8 kg (up .1 kg from the week prior)
He did awesome from week #7 - week #8. He ate like a champ, and poo was normal. (Yeah, and yeah!)
He received Vincristine only.
LABS:
ANC: 1,710
WBC: 5.3
Hemoglobin: 10.6
Platelets: 417
Today was chemo infusion #9. I am happy to announce that we only have 10 more to go! (Actually less, but I will explain that in a bit)...
Daddy had the day off today, so he was able to go with us. I was glad, since this was his first time he had a chance to tag along and witness first-hand how the infusion process works, and I wanted him to have a chance to ask the Oncologist any questions that he had for himself.
Once again, our appointment was set for 1:00 p.m. We arrived pretty much AT 1:00 p.m. - we are never early for anything when Daddy is with us! He is rarely ever on time for anything, so I am actually surprised we weren't late. ; )
The nurse took him straight to the scale when we "checked-in". Weight: 9.8 - Same as last week. It's okay if he maintains his weight, just as long as we don't go down.
They set us up in our regular room. Room 17.
Vitals were taken, BP: 115/68
We waited about 45 minutes to 1 hour before his primary Oncologist, Dr. Esparza, came in. It was nice to actually see him, instead of the NP. Nothing really new to report, but I did let him know that his appetite has once again come to a halt, and the diarrhea has started again. He did mention that the diarrhea most likely is due to chemo (we knew this), and it is very rare. He said that is not tolerating the chemo well, and his little body is very sensitive. We will just have to bite the bullet and get through the last several weeks of chemo, then treat as necessary when the treatment is over. He said he will give him 2-weeks after chemo is completed for his bowels to return to normal. If they do not, then they will start some invasive testing. For the meantime, we need to rid his body of whatever cancer cells are left behind, so dealing with diarrhea is on the bottom of our list for now - just as long as he stays hydrated, obviously. But, oh my gosh! These poopies are outrageous! They explode up and out every single time, like a volcano. It's crazy. His tummy must hurt, because he screams every time. He still wakes up many times through the night, crying and kicking. I make him a bottle, but for the past few nights, he has been refusing it. He drank 4 oz before his nap this morning at 10:30 am and vomited it all up shortly after. Bath time happens a few times a day, needless to say!
Another thing I mentioned was Isaac's hair growth. His hair is growing SOO fast!! He said that most likely, the chemo is killing off some of his hair follicles and the other ones are growing out of control. He does have significant thinning on the sides of his head, but look at the comparisons...
6 weeks ago
Today! (Doesn't he look so grown-up?!)
Here is a video of the chemo infusion process.
Click here
Since we ended Cycle 3, his infusions will be on a different schedule from here on out.
Week 10: A & V
Weeks 11 and 12: No chemo
Week 13: A & V2 (V2 is a beefed up version of V, a stronger dose).
Weeks 14 and 15: No chemo
Week 16: A & V2
Weeks 17 and 18: No chemo
Week 19: A & V2
Weeks 20-22: No chemo, resting period. END OF CHEMO.
So, technically, he has 13 more weeks of Chemo (total 22 weeks), but only 4 more (but stronger) infusions. We will still have to go weekly, though, for lab draws.
LABS:
ANC: 1,150
WBC: 4.5
Hemoglobin: 11.2
Platelets: 463
His ANC levels have dropped significantly since last week. They went from 1,710 to 1,150. A "safe" ANC is 1,500 and above.
Friday, February 26, 2010
I still would have chosen you
I came across this poem, and thought it was just perfect..
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.
If God had told me, "this soul will one day need extra care and needs", I still would have chosen you...
If He had told me, "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me, "this soul would make me question the depth of my faith", I still would have chosen you...
If He had told me, "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you...
If He had told me, "our time spent together here on earth could be short", I still would have chosen you...
If He had told me, "this soul may one day make me witness overbearing suffering", I still would have chosen you...
If He had told me, "all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Author Unknown
Wednesday, February 17, 2010
Chemo treatment #7 down-12 more to go!
Pretty uneventful appointment. We went in at 1:00 p.m.. ran down to the Pharmacy in the basement and dropped off his prescription for his Glutamine powder. Back up to the 2nd floor for Chemo.
Weight: 9.7 kg - down 1 lb 1 oz from last week. I am very, very surprised he lost so much weight. I really, really thought he would be up from last week since the diarrhea has come to a halt, and he has been eating more. So confusing, yet frustrating at the same time.
His nurse came in shortly after his vitals, with the Vincristine, Dactinomycin, Zofran and a 100 ml bag of fluids. Whenever you see that bag of fluids come in, you know your gonna be there for a while. She proceeded to access his port, and pushed through the Vincristine. Followed by the Zofran which was pushed through the IV for 10 minutes, then came the evil Dactinomycin, which was pushed through over 15 minutes. She came back in and started the IV bag of what I call "juice".
Mary, the NP, came in between all of this and we chatted for a bit. She said that his fluid intake is definitely not where he should be (he drinks no more than 20 oz a day). It would be fine, IF he was eating like a normal child, but, still, when you have one kidney working solo, you need to drink as much as possible - regardless. So.. we really need to work on pushing fluids on our little guy, which is a big problem since he hates any sort of 100% juice. He will drink a scant amount of Gatorade, and some water here and there.
I mentioned to her that we are getting little to zero sleep at night, and it doesn't help much when he kicks and kicks all night long. She pretty much flat out told me that she didn't know why he was doing this and to try and give him some Tylenol before bed. (Not in a mean way, she just didn't have an answer for me!) It could very well be that he is experiencing pain, but we don't know where. Well, I didn't feel particularly comfortable giving it to him last night since he was pumped full of so many drugs yesterday. How much can his little body tolerate, seriously. We will try tonight, and see how it goes. We are going to discuss our options next week, due to the weight loss and limited intake with food/liquids and also the night time pain issue.
Went back down to the basement to pick up the Glutamine (which his insurance did not cover, by the way. Had to pay cash, wonderful!) The appointment took nearly 3 hours from start to finish.
ANC: 2,110
WBC: 5.7
Hemoglobin: 10.3
Platelets: 573
Next appointment set for Wednesday, the 24th.
On a side note: He is cutting his first top front tooth, on top of all the other effects he is feeling from the chemo. My poor little guy is a miserable wreck!
Sunday, February 14, 2010
Sleep and Appetite
You lose some, but you gain some.
Sleep seems to be non-existent. We are both (Mommy & Isaac) running on fumes at this point. Exhausted! He wakes up it seems every hour, whining, tossing and turning. I just wish he could tell me what he is feeling so I could try and make it better.
Appetite has improved greatly within the past 3 days. He has eaten so much more than what he has been in the past few weeks. Unfortunately, I do not expect this to continue since he will be receiving both V & A this Wednesday, but I am happy he is stocking up on calories for now.
Poo has been great! No more than 1-2 a day. An awesome improvement!
Sleep seems to be non-existent. We are both (Mommy & Isaac) running on fumes at this point. Exhausted! He wakes up it seems every hour, whining, tossing and turning. I just wish he could tell me what he is feeling so I could try and make it better.
Appetite has improved greatly within the past 3 days. He has eaten so much more than what he has been in the past few weeks. Unfortunately, I do not expect this to continue since he will be receiving both V & A this Wednesday, but I am happy he is stocking up on calories for now.
Poo has been great! No more than 1-2 a day. An awesome improvement!
Wednesday, February 10, 2010
Chemo treatment #6 down - 13 more to go
Our appointment was at 1:30 p.m., and we were up and out of the house by 12:30 p.m. Arrived in OPI, and the nurse went ahead and took his weight before sending us into the room. (Good idea!) Weight: 10.1 kg - He was 10.3 kg when we left the hospital on Friday.
Get into the room, and she takes his bp: 106/76 - awesome!
A different NP, whom I have never met before comes in. Sorry to be so blunt, but she was not the brightest light on the block. She made me really nervous, as it seemed like she did not know what she was doing. She comes in with a mask, and asks why we are wearing them... I mean... there is a sign outside the door and it's everywhere in his chart! She does not even gown up, and she is talking to me with the mask hanging halfway off her face. Umm... okay!! She then just continues to ask some goofball questions.
Anyhow, she leaves eventually, and his nurse comes in with her box of tricks.
She draws labs, and proceeds to infuse his Vincristine. I mentioned to the NP that Isaac has been extremely queasy, so she orders a IV push of Zofran. The nurse did not have the Zofran ready or anything to tape down his port site, so I had to sit there with him - in all needle glory - with him thrashing and screaming for 15 minutes while she "ran" to get something to tape it down. Holy hell. It's not easy trying to hold a 9-month-old on your lap and keep his hands from grabbing at his line.. oh.. and the syringe of Saline hanging from it. He was MAD. All the while, another lady comes in and offers us to participate in another clinical trial, so while she is explaining what and why's, her words are going in one ear and out the other while I hold down my screaming Mimi. I think she took the hint, and told me she would leave the paperwork for me to take home and read myself.
On the downside, his ANC levels have fallen to 2,000. On January 26th, they were at 4,600. Anything under 1,500 will put his chemotherapy at a temporary halt. He goes back in for blood counts on Tuesday, to determine if he will receive chemo on Wednesday (A & V).
Get into the room, and she takes his bp: 106/76 - awesome!
A different NP, whom I have never met before comes in. Sorry to be so blunt, but she was not the brightest light on the block. She made me really nervous, as it seemed like she did not know what she was doing. She comes in with a mask, and asks why we are wearing them... I mean... there is a sign outside the door and it's everywhere in his chart! She does not even gown up, and she is talking to me with the mask hanging halfway off her face. Umm... okay!! She then just continues to ask some goofball questions.
Anyhow, she leaves eventually, and his nurse comes in with her box of tricks.
She draws labs, and proceeds to infuse his Vincristine. I mentioned to the NP that Isaac has been extremely queasy, so she orders a IV push of Zofran. The nurse did not have the Zofran ready or anything to tape down his port site, so I had to sit there with him - in all needle glory - with him thrashing and screaming for 15 minutes while she "ran" to get something to tape it down. Holy hell. It's not easy trying to hold a 9-month-old on your lap and keep his hands from grabbing at his line.. oh.. and the syringe of Saline hanging from it. He was MAD. All the while, another lady comes in and offers us to participate in another clinical trial, so while she is explaining what and why's, her words are going in one ear and out the other while I hold down my screaming Mimi. I think she took the hint, and told me she would leave the paperwork for me to take home and read myself.
On the downside, his ANC levels have fallen to 2,000. On January 26th, they were at 4,600. Anything under 1,500 will put his chemotherapy at a temporary halt. He goes back in for blood counts on Tuesday, to determine if he will receive chemo on Wednesday (A & V).
Monday, February 8, 2010
Hospital stay - quick recap
Isaac was hospitalized from Friday, January 29th to Friday, February 5th.
We went in for his regular chemo appointment on that Wednesday, January 27th. He was still having diarrhea, so he received 100 ml's of fluid before his therapy was administered. I had taken stool samples into Quest the week before, and they ended up coming back all negative.
Fast forward a few days to Friday. His diarrhea had significantly increased from 3-4 times a day to 6-7 times. He just didn't look right. He was very lethargic, whiny, and did not want to be put down. He also had a white cast to his face - very pale, and his eyes had purple circles under them. I decided to make a call into the Oncology unit, and they advised me to bring him in right away. This was around 11:00 a.m., and we got there a little before 1:00 p.m.
I had applied EMLA to his port site before we left, because I knew that he would be accessed. They weighed him, and he was down nearly 1.5 pounds from that Wednesday. He lost 1 1/2 pounds in less than 2 days.
They accessed his port and drew labs. They also immediately hooked him up to some IV fluids. We were not in the OPI unit long, before the Oncologist (Dr. Shen) came in and let me know that they were in the process of having him admitted.
Around 5:00 p.m., we were eventually moved up to the 3rd floor, Oncology, room 331.
On that same night, he ended up stepping on his IV line standing in his crib and yanked it right out of his chest. His nurse was running down the hallway gathering all the necessary equipment to re-access. They have to re-access quickly since the blood in the catheter clots within minutes. Since the line was not hep-locked prior to removal, it may develop a blockage. He then had to have his very first (and praying the last) access to his port with NO EMLA. No EMLA = pain. His nurse came in with the charge nurse, so I opted to step this one out and left the room. I knew I would have probably lost it. Of course, I could hear his screams from the hallway, and it didn't make it that much easier. His IV was a little boggy and would occlude, so she had to flush it 3 times before the fluid would flow freely after re-access.
During his stay, they ended up checking his stool for various different tests, including the same ones done the week before, and also for parasites. Everything came back good!
It all came down to the Oncology doctor and the GI specialist agreeing on what the right course of care would be. The Oncologist wanted Isaac to be scoped and have a section of his colon biopsied, but the GI specialist did not feel it was 100% necessary.
They ultimately decided (for now) that the chemotherapy is the culprit of the diarrhea. They administered a dose of Imodium and it seemed to do the trick (again... for now).
Can we get off the rollercoaster, now?
We went in for his regular chemo appointment on that Wednesday, January 27th. He was still having diarrhea, so he received 100 ml's of fluid before his therapy was administered. I had taken stool samples into Quest the week before, and they ended up coming back all negative.
Fast forward a few days to Friday. His diarrhea had significantly increased from 3-4 times a day to 6-7 times. He just didn't look right. He was very lethargic, whiny, and did not want to be put down. He also had a white cast to his face - very pale, and his eyes had purple circles under them. I decided to make a call into the Oncology unit, and they advised me to bring him in right away. This was around 11:00 a.m., and we got there a little before 1:00 p.m.
I had applied EMLA to his port site before we left, because I knew that he would be accessed. They weighed him, and he was down nearly 1.5 pounds from that Wednesday. He lost 1 1/2 pounds in less than 2 days.
They accessed his port and drew labs. They also immediately hooked him up to some IV fluids. We were not in the OPI unit long, before the Oncologist (Dr. Shen) came in and let me know that they were in the process of having him admitted.
Around 5:00 p.m., we were eventually moved up to the 3rd floor, Oncology, room 331.
On that same night, he ended up stepping on his IV line standing in his crib and yanked it right out of his chest. His nurse was running down the hallway gathering all the necessary equipment to re-access. They have to re-access quickly since the blood in the catheter clots within minutes. Since the line was not hep-locked prior to removal, it may develop a blockage. He then had to have his very first (and praying the last) access to his port with NO EMLA. No EMLA = pain. His nurse came in with the charge nurse, so I opted to step this one out and left the room. I knew I would have probably lost it. Of course, I could hear his screams from the hallway, and it didn't make it that much easier. His IV was a little boggy and would occlude, so she had to flush it 3 times before the fluid would flow freely after re-access.
During his stay, they ended up checking his stool for various different tests, including the same ones done the week before, and also for parasites. Everything came back good!
It all came down to the Oncology doctor and the GI specialist agreeing on what the right course of care would be. The Oncologist wanted Isaac to be scoped and have a section of his colon biopsied, but the GI specialist did not feel it was 100% necessary.
They ultimately decided (for now) that the chemotherapy is the culprit of the diarrhea. They administered a dose of Imodium and it seemed to do the trick (again... for now).
Can we get off the rollercoaster, now?
Saturday, February 6, 2010
Friday, February 5, 2010
Wednesday, February 3, 2010
Chemo treatment #5 down - 14 more to go / Update
Going on day 6 since he was admitted in the Oncology unit. It is so hard to spend day-in and day-out in that tiny, itty bitty room. I hate the fact that he is cooped up 24/7. You see other cancer children able to walk the halls, taking rides in the wagon, and playing in the playroom. But, we can't do none of that since he is in isolation. He is either in my arms or in his crib, so it is very difficult to get through each day. On my way back to the hospital yesterday, I stopped off at Toysrus and picked him up a ABC playmat, and a bunch of new toys. (Toys get old quick when you are playing with the same ones ALL day!) He absolutely loved being back on the floor able to move about. He does try to sneak off the mat every once and a while, but he is held back by his IV line (and Mommy!).
He had an x ray of his belly on Monday evening (at 10:30 p.m. nevertheless!) and it came back clear! No obstruction. Grandma said that during the whole procedure, Isaac was saying, "ut oh!" He was great, and did not cry.
He had his 5th chemotherapy treatment today. Vincristine only.
Doctor's are still baffled about the cause of the diarrhea and are really leaning toward it being chemotherapy related, but are not really sure how to go about treating it. They have tested his poopies 3 times, and everything keeps coming back negative.
His appetite is still horrible, but we are working on it. We are hoping to be home, soon.
Oh! I bought Isaac his first bottle of bubbles. Do you think he liked them? : )
He had an x ray of his belly on Monday evening (at 10:30 p.m. nevertheless!) and it came back clear! No obstruction. Grandma said that during the whole procedure, Isaac was saying, "ut oh!" He was great, and did not cry.
He had his 5th chemotherapy treatment today. Vincristine only.
Doctor's are still baffled about the cause of the diarrhea and are really leaning toward it being chemotherapy related, but are not really sure how to go about treating it. They have tested his poopies 3 times, and everything keeps coming back negative.
His appetite is still horrible, but we are working on it. We are hoping to be home, soon.
Oh! I bought Isaac his first bottle of bubbles. Do you think he liked them? : )
Monday, February 1, 2010
Update, Monday, 2/1
Isaac is still in the hospital - going on day 4.Thankfully, his Grandma (my Mom) was granted permission to come and stay with him for the night, so I could come home and shower. (And eat. And sleep.) They do not allow any other visitors besides for parents/guardians due to the h1n1 outbreak - totally understandable. Daddy is in New Hampshire on business for 4 weeks, and cannot be here to help.
It has been a rough 3 days. He has been hooked up and is being pumped full of fluids 24/7. Yesterday, he had 8 diarrhea explosions. I mean e-x-p-l-o-s-i-o-n-s. He saturated his crib from end to end twice and needed brand new bedding.
His appetite is nil, and when he does eat a little something, it comes right out within 10 minutes. He is on a gastro diet. He turns away to any sort of food they offer, but he is drinking formula. No as much as he should be, but anything is something at this point.
The GI doctor came in today, and basically said that the diarrhea may be caused by a few possibilities. 1.) A small part of his bowel may have become twisted during surgery to remove his kidney and tumor 2.) Colitis or something to that manner 3.) 100% chemotherapy-related.
He is ordering an xray for tomorrow to rule out a blockage. If there is no blockage, then they will possibly take a biopsy of his colon to rule out no. 2 above. If that is okay, then most likely it is no. 3, and they will then give him medication to hopefully put an end to the diarrhea. They do not prescribe anything for the diarrhea without ruling out other possibilities first.
This is all in a nutshell. I am writing this on VERY little sleep and may sound jumbled. The nurses come in all hours of the night, and wake him up every 2 hours to take vitals. It is the most frustrating thing ever to JUST get him back to sleep, and finally get a chance to lay down, and they are back! That. Quick. They woke him last night, just to change a small pee diaper. I mean, c'mon now! Just because they are used to being awake at night, does not mean WE are!
Sunday, January 31, 2010
Hello, from Oncology
Isaac was admitted into CHOC on Friday. His little body is not tolerating the Chemotherapy, and has lost a considerable amount of weight. I will update when I can (little - no internet).
Thoughts and prayers are very much appreciated during this rough time.
Thoughts and prayers are very much appreciated during this rough time.
Wednesday, January 27, 2010
Chemo treatment #4 down - 15 more to go & Kidney U/S
Two words. Long. Day.
Isaac had two appointments today. Ultrasound at 9:30 a.m., and chemo at 11:30 a.m.
I dropped of Sheldon at school at 7:30 a.m. (Izabella was sick, so she stayed at home with Nannie and her Auntie Lissa), then myself and Isaac hopped on the 91 freeway.
We had to be in the Radiology unit - second floor - by 9:00 a.m. to check in. I got up to the receptionist, and she proceeds to ask me if I went down to the first floor to register first. Umm, no. No one told me that I had to go down there and register. I kindly explained that 1.) I would rather not take my immunosuppressed child up and down, here and there to each floor, when all you can hear in the waiting room is coughing and sniffing, and 2.) we are in insolation. She agreed, and called up someone from registration to come to us. Thank you! She sat us at a nice little desk - away from all the sickies. Registration man comes, we are registered. They ever so kindly put us in front of all other waiting patients and we are called in shortly after.
My little man was GREAT during the whole procedure. She got an awesome scan of his kidney.
We finished up pretty quick and we were out of there by 9:40 a.m., with nearly 2 hours to burn. Yeah. 2 hours. We picked up some brekkie/lunch, and drove across the street to the OPI clinic, where we sat in the car and waited. And waited. Isaac thought it was the funniest thing to grab my straw and yank it out while flinging lemonade all over the car in the process. You didn't notice how much he flung everywhere because it was dark in the parking structure, but when we left and got out into daylight - oh my gosh - there is stickiness everywhere.. even on the dashboard and windshield! Have no fear, we will have Daddy clean it.
By 11:15 a.m., I was done being in that car as much as Isaac was...
so we went in the clinic a tad early. We get our "Hi, Isaac!" but this time, the nurse says, "meet you in room (closet) 17. Do you know the code?" Me - "no". "Oh! It's 1-2-3-4-5". Wow, we qualified to find out our closet secret code! Yippie skippie!
Vitals:
Blood pressure - 101/59 (yeah!)
Weight - 10.21 kg (up from last week!)
Nurse Sabrina is back around 12:00 p.m. and sets up a 15-minute 4 mg Zofran drip.
Mary, the NP, comes in at 12:45 p.m. and chats with us for a bit. The scoop on the poop. The poop was negative for all 3 cultures. Most likely the diarrhea is chemotherapy-induced.
She asks about his stools, and I let her know that they are still pretty watery. She puts in an order for him to receive 100 ml's of fluid before his chemo transfusion. This fluid was pushed through over a 1 hr time frame. Fun times. Isaac screamed. The. Whole. Time. He was so tired by this point. Tired of being in the closet, tired of being held, tired because he was so off his routine and was waaaaay late for his nap. Keep in mind, we left the house at 7:20 a.m., and we arrive in the OPI at 11:15 a.m., and our appointment was at 11:30 a.m., and Mary did not come in until after 12:40 p.m.
Fluids are finally pushed through, and nurse S is back with chemo V & A. When she removes the line in his port, she notices there is a little discharge, a.k.a. puss on the outer edge of the access point. Greeeeeeeaat. She advises us to keep a very close watch on him AND his port, watching for any signs of infection and for a fever.
In the end, we are out of there at 2:30 p.m. and do not arrive back home until after 3:30 p.m.
You wanna hear some good news? His ultrasound report came back STAT and his remaining right kidney is functioning PERFECTLY!!
Isaac had two appointments today. Ultrasound at 9:30 a.m., and chemo at 11:30 a.m.
I dropped of Sheldon at school at 7:30 a.m. (Izabella was sick, so she stayed at home with Nannie and her Auntie Lissa), then myself and Isaac hopped on the 91 freeway.
We had to be in the Radiology unit - second floor - by 9:00 a.m. to check in. I got up to the receptionist, and she proceeds to ask me if I went down to the first floor to register first. Umm, no. No one told me that I had to go down there and register. I kindly explained that 1.) I would rather not take my immunosuppressed child up and down, here and there to each floor, when all you can hear in the waiting room is coughing and sniffing, and 2.) we are in insolation. She agreed, and called up someone from registration to come to us. Thank you! She sat us at a nice little desk - away from all the sickies. Registration man comes, we are registered. They ever so kindly put us in front of all other waiting patients and we are called in shortly after.
My little man was GREAT during the whole procedure. She got an awesome scan of his kidney.
We finished up pretty quick and we were out of there by 9:40 a.m., with nearly 2 hours to burn. Yeah. 2 hours. We picked up some brekkie/lunch, and drove across the street to the OPI clinic, where we sat in the car and waited. And waited. Isaac thought it was the funniest thing to grab my straw and yank it out while flinging lemonade all over the car in the process. You didn't notice how much he flung everywhere because it was dark in the parking structure, but when we left and got out into daylight - oh my gosh - there is stickiness everywhere.. even on the dashboard and windshield! Have no fear, we will have Daddy clean it.
By 11:15 a.m., I was done being in that car as much as Isaac was...
so we went in the clinic a tad early. We get our "Hi, Isaac!" but this time, the nurse says, "meet you in room (closet) 17. Do you know the code?" Me - "no". "Oh! It's 1-2-3-4-5". Wow, we qualified to find out our closet secret code! Yippie skippie!
Vitals:
Blood pressure - 101/59 (yeah!)
Weight - 10.21 kg (up from last week!)
Nurse Sabrina is back around 12:00 p.m. and sets up a 15-minute 4 mg Zofran drip.
Mary, the NP, comes in at 12:45 p.m. and chats with us for a bit. The scoop on the poop. The poop was negative for all 3 cultures. Most likely the diarrhea is chemotherapy-induced.
Chemotherapy tends to kill fast-growing cells. The cells in your hair, the cells in your bone marrow that make your blood, and the cells that line your intestines are among the most rapidly growing cells in your body. Therefore the typical side effects of chemotherapy include hair loss, decreased blood counts and damage to your intestinal lining. If your chemotherapy causes sufficient damage to the lining of your intestine, diarrhea may result.
She asks about his stools, and I let her know that they are still pretty watery. She puts in an order for him to receive 100 ml's of fluid before his chemo transfusion. This fluid was pushed through over a 1 hr time frame. Fun times. Isaac screamed. The. Whole. Time. He was so tired by this point. Tired of being in the closet, tired of being held, tired because he was so off his routine and was waaaaay late for his nap. Keep in mind, we left the house at 7:20 a.m., and we arrive in the OPI at 11:15 a.m., and our appointment was at 11:30 a.m., and Mary did not come in until after 12:40 p.m.
Fluids are finally pushed through, and nurse S is back with chemo V & A. When she removes the line in his port, she notices there is a little discharge, a.k.a. puss on the outer edge of the access point. Greeeeeeeaat. She advises us to keep a very close watch on him AND his port, watching for any signs of infection and for a fever.
In the end, we are out of there at 2:30 p.m. and do not arrive back home until after 3:30 p.m.
You wanna hear some good news? His ultrasound report came back STAT and his remaining right kidney is functioning PERFECTLY!!
Tuesday, January 26, 2010
Green light = GO
We were scheduled to arrive in the Oncology clinic this morning at 8:30 a.m., so they could draw routine labs since it is the dreaded 3rd week. Third week = both V & A treatments. When he receives V only, they draw his blood same day (Wednesday), directly before they push through chemo medicine. But, when he has to receive V AND A, they have to make sure his blood counts are okay ahead of time since the A wears down his blood cells like nobody's business.
We arrive and sit in our nice little isolation waiting room. Holy moly was it HOT in there. They had that heater blasting! Little Einsteins comes on, and gathers Isaac's attention for the few minutes that I was checking him in and signing the necessary paperwork. The nurse comes to the window shortly after and lets us know she will be right with us. Okay! Funny, because Isaac never even looks at the television at home.
Less than 10 minutes later, she comes to us with her little tray of goodies. She accesses his port, with ease, no flinching. Draws blood, and gives me the option of leaving his line accessed. I had to think about it for a few, then decided to just leave it for tomorrow's chemo. Isaac gets a little anxious during port access, so I thought I would save him a little nervousness for 1 day. That way, all she has to do is reach under his shirt and grab the 6 inch IV cord, rather than having to tear off the Tagaderm-film, wipe off the EMLA, douse him with alcohol and POKE. By step 3 (alcohol) he is already starting to become Mr. Squirmy Wormie, so by the time she actually pushes through the chemo, he is full on kicking n' twisting like an alligator.
Came home, and watched him like a hawk so he would not discover his new appendage. He did great! I was worried that we would get it caught on something, but we made it through the day.
Blood counts came back great! We are a go for tomorrow.
ANC: 4,600
WBC: 8.1
Hemoglobin: 10.5
Platelets: 547
We arrive and sit in our nice little isolation waiting room. Holy moly was it HOT in there. They had that heater blasting! Little Einsteins comes on, and gathers Isaac's attention for the few minutes that I was checking him in and signing the necessary paperwork. The nurse comes to the window shortly after and lets us know she will be right with us. Okay! Funny, because Isaac never even looks at the television at home.
Less than 10 minutes later, she comes to us with her little tray of goodies. She accesses his port, with ease, no flinching. Draws blood, and gives me the option of leaving his line accessed. I had to think about it for a few, then decided to just leave it for tomorrow's chemo. Isaac gets a little anxious during port access, so I thought I would save him a little nervousness for 1 day. That way, all she has to do is reach under his shirt and grab the 6 inch IV cord, rather than having to tear off the Tagaderm-film, wipe off the EMLA, douse him with alcohol and POKE. By step 3 (alcohol) he is already starting to become Mr. Squirmy Wormie, so by the time she actually pushes through the chemo, he is full on kicking n' twisting like an alligator.
Came home, and watched him like a hawk so he would not discover his new appendage. He did great! I was worried that we would get it caught on something, but we made it through the day.
Blood counts came back great! We are a go for tomorrow.
ANC: 4,600
WBC: 8.1
Hemoglobin: 10.5
Platelets: 547
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