Showing posts with label Hospitalizations. Show all posts
Showing posts with label Hospitalizations. Show all posts
Thursday, May 9, 2013
Last High Dose Methotrexate
Monday, April 22, 2013
High Dose Methotrexate 3rd Round
We came to hospital 7:30 this morning -- still 1 hour late for the appointment. Lucas is due for his 9th lumbar puncture/spinal tab with Chemo. Since he had low blood sugar problem and he needed to be fasting for the general anesthesia, his surgery is scheduled at 8:30. He has been eating great and rather active at home -- no blood transfusion has been needed since last round. By 10am I met him at the post-op area and he was very irritable and asking for food -- but the policy said that no food until they leave the post-op area. I have the glucose meter with me all the time now so I tested him when the nurse left us alone. What do I know? 37! I started feeding him right away and with a small bag of chips together with a Popsicle, he tested 73 after half an hour. I'm glad that I acted on my own terms though. Even though Lucas was not sleepy but I just felt that I had to know it for the peace of my mind. I think I will be more prepared with better snacks and always check him after LP.
We got admitted after LP and his bicarbonate IV fluids (with D5) started just before 1am. By 6pm his urine pH cleared and after a dose of Zofran (given through IV every 12 hours for HDMTX), his HDMTX started 6:35pm. When his first 30 minute loading dose ended switched to 23 1/2 dose, we had some disagreement with the nurse about the rate the bicarbonate should be running. It turns out that we remembered right and the rate they were set was 2/3 of what it should have been. We just feel that there are many things that parents need to be monitoring all the time.
They just decreased the concentration of his bicarbonate fluids from 40 to 35. The reason they gave us is (1) his urine pH has been consistently 9 and (2) he cleared the previous two times fine. I'm not sold by the ideas because even letting the urine sitting in diaper/cotton ball for a small amount of time would raise the pH from 8 to 9 (at least that's what they told me). And he already cleared the second time around slower than the first time. But it's hard to argue with the night shift residents ("the doctors who make decisions"). Nurses don't make decisions, their job is the execute what has been ordered. And if parents/patients keep question their actions, they would have to ask the doctor again. So some of the nurses have made up their minds that they won't pass any of your concern or questions. We really appreciate the ones who always take our concerns seriously and try their best to get the answers that we need. Anyway, for now, we just have to try our best to get the urine sample soon so the pH reflect more of the truth.
If things go smoothly, we can go home Thursday morning. Lucas has been rather hyper today -- as if he is on steroid (though he didn't have any typical steroid side effect when he was on it in induction). He would suddenly shout out loud -- demanding something that was thrown away a while ago. It was as if his mind is scattered and he would suddenly get very tense about a remote memory. I hope it's just because he needs more sleep and he had anesthesia.
We got admitted after LP and his bicarbonate IV fluids (with D5) started just before 1am. By 6pm his urine pH cleared and after a dose of Zofran (given through IV every 12 hours for HDMTX), his HDMTX started 6:35pm. When his first 30 minute loading dose ended switched to 23 1/2 dose, we had some disagreement with the nurse about the rate the bicarbonate should be running. It turns out that we remembered right and the rate they were set was 2/3 of what it should have been. We just feel that there are many things that parents need to be monitoring all the time.
They just decreased the concentration of his bicarbonate fluids from 40 to 35. The reason they gave us is (1) his urine pH has been consistently 9 and (2) he cleared the previous two times fine. I'm not sold by the ideas because even letting the urine sitting in diaper/cotton ball for a small amount of time would raise the pH from 8 to 9 (at least that's what they told me). And he already cleared the second time around slower than the first time. But it's hard to argue with the night shift residents ("the doctors who make decisions"). Nurses don't make decisions, their job is the execute what has been ordered. And if parents/patients keep question their actions, they would have to ask the doctor again. So some of the nurses have made up their minds that they won't pass any of your concern or questions. We really appreciate the ones who always take our concerns seriously and try their best to get the answers that we need. Anyway, for now, we just have to try our best to get the urine sample soon so the pH reflect more of the truth.
If things go smoothly, we can go home Thursday morning. Lucas has been rather hyper today -- as if he is on steroid (though he didn't have any typical steroid side effect when he was on it in induction). He would suddenly shout out loud -- demanding something that was thrown away a while ago. It was as if his mind is scattered and he would suddenly get very tense about a remote memory. I hope it's just because he needs more sleep and he had anesthesia.
Monday, April 8, 2013
Chemo tomorrow on schedule
Since it has been shown that the seizure last Thursday has no direct association with chemo, the doctors decide that chemo will still be on schedule. Lucas will get another dose of vincristine, together with high dose methotrexate, which would require 3 days of clearing. Lucas has been doing well the past 2 days. He eats very well and is very playful. He even allowed the company of nurse and PCA while we stepped away to get food from cafeteria. Finger poking is still every 4 hours and he doesn't cry at all now with the actual penlet/lancet for the glucose machine. I learned how to use it by doing it on my own fingers. It's going to be part of our life now.
It's great to see Lucas so well today and it's sad to know that he will have another chemo tomorrow and will have huge canker sores in his mouth and don't feel well in general. We just have to remind ourselves that he is not cured yet and the extra medication does more good than evil. It's hard to look ahead to 3 more years of chemo considering what we have experienced the past 3+ weeks. It's in my nature to plan ahead for everything and I really have to try harder to live one day at a time.
I came back home this evening and took my parents and Alex out for grocery shopping. I will have a good night of sleep tonight and get ready for 2-3 hard nights of 1 diaper every 1.5 hours.
It's great to see Lucas so well today and it's sad to know that he will have another chemo tomorrow and will have huge canker sores in his mouth and don't feel well in general. We just have to remind ourselves that he is not cured yet and the extra medication does more good than evil. It's hard to look ahead to 3 more years of chemo considering what we have experienced the past 3+ weeks. It's in my nature to plan ahead for everything and I really have to try harder to live one day at a time.
I came back home this evening and took my parents and Alex out for grocery shopping. I will have a good night of sleep tonight and get ready for 2-3 hard nights of 1 diaper every 1.5 hours.
Saturday, April 6, 2013
Got a room in Hem/Onc floor
The floor is truly packed! The nurses and PCAs we are getting are all floaters from other floors. Lucas is in stable conditions and good spirits. I came back home to get some good sleep since I didn't get much sleep last night. Usually they give the more experienced nurses to patients who would undergo chemotherapy so we are not surprised to get the floaters. They won't let us go home before the endocrinologists figure out what causes sudden unpredictable drop in glucose. The scheduled chemo is next Tuesday and it might get delayed if they couldn't rule out chemo side effect from the picture. In any case, it will be another longer stay in the hospital.
Friday, April 5, 2013
Still in ICU
MRI cleared! Doing glucose tolerance test now -- no food and no sugar IV until his glucose drops to 50 -- then get a blood sample for lab studies. He hasn't eaten since 8pm yesterday and was taken off glucose IV 5pm. His glucose was 67 on 10pm. It's not dropping as quickly as we thought and I have mixed feelings for that -- I want this test to be done so he could start eating tomorrow, but on the other hand I'm happy that his glucose does not always crash like it did. And I want this glucose below 50 to happen before I go to bed so I can help to assess to prevent him having another seizure. I had to remind the doctor to get the dextrose bolus ready since apparently you cannot always tell the happening of seizure by heart rate monitor, pulse monitor, oxygen monitor, blood pressure monitor, and breathing monitor. And him sleeping at the time is definitely not very helpful. So Jianwei and I are taking shifts to get some sleep tonight.
After the glucose tolerance test, we will be able to leave ICU and go to Hem/Onc floor tomorrow -- but it's full now and we hope somebody will be discharged tomorrow. We regret complaining about 2 weeks stays at Hem/Onc floor -- we miss it immensely now and really want to leave ICU tomorrow (and never come back!).
After the glucose tolerance test, we will be able to leave ICU and go to Hem/Onc floor tomorrow -- but it's full now and we hope somebody will be discharged tomorrow. We regret complaining about 2 weeks stays at Hem/Onc floor -- we miss it immensely now and really want to leave ICU tomorrow (and never come back!).
Thursday, April 4, 2013
Long day, short summary--in ICU now
Keywords in chronicle order: hard to wake up 8am; came to scheduled office visit 9:15am; low blood sugar 10am; seizure that lasted 30 minutes 10:30am; ICU 11am; CT 12pm; EEG 2pm; fever 3:30pm; spinal tap to check spinal infection 4pm; finally woke up but eye lids so puff that can't really open eyes 7pm; ate good dinner but super cranky.
He had probably a dozen drugs today. 2 anti-seisure drugs, 4 antibiotics, sedation drug, calming drug, Tylenol -- and there must be ones that I'm not aware of.
ICU for the tonight and tomorrow. Glucose check every hour again. MRI tomorrow and blood culture and spinal fluids results will be out tomorrow morning too. If everything is negative and he is stable, he will be transferred to the Hem/Onc floor. Since the seizure he had was life-threatening, they won't let us go home any time soon.
Cause of seizure still undecided. Probably a combination of chemo side effects, low blood sugar, and bacterial/viral infection.
Chemo is not known to cause low blood sugar, but it might be a catalyst. Cause is yet to be found.
He had probably a dozen drugs today. 2 anti-seisure drugs, 4 antibiotics, sedation drug, calming drug, Tylenol -- and there must be ones that I'm not aware of.
ICU for the tonight and tomorrow. Glucose check every hour again. MRI tomorrow and blood culture and spinal fluids results will be out tomorrow morning too. If everything is negative and he is stable, he will be transferred to the Hem/Onc floor. Since the seizure he had was life-threatening, they won't let us go home any time soon.
Cause of seizure still undecided. Probably a combination of chemo side effects, low blood sugar, and bacterial/viral infection.
Chemo is not known to cause low blood sugar, but it might be a catalyst. Cause is yet to be found.
Saturday, March 30, 2013
We are home
No fever after one dose of Tylenol yesterday afternoon and we were discharged after 24 hour blood culture remained negative. In the past 24 hours, Lucas had 5 different antibiotics. Hospital is no fun, especially when there's fever involved.
Friday, March 29, 2013
100.8 3:30pm, 101.8 4:30pm
Blood culture, broad spectrum antibiotics, stay over night.
We really can't handle another blood culture positive. Let this just be a fever that goes away quickly and no reason is fine with us.
We really can't handle another blood culture positive. Let this just be a fever that goes away quickly and no reason is fine with us.
Temp 100.4, still in hospital
Appetite decreased today. Measured 100.4 1pm and 2pm. Technically not a fever and we are given the choice of going back home and monitoring him at hime. We choose to let him take his nap here and wait and see if the temperature rises or falls.
The hardest thing is still trying to get him drink. His IV fluids stopped at 8am and for the last 5 hours he just wouldn't drink much, even said no to milk.
I looked up the side effects of HDMTX. Chills and fever occur very rarely. And his ANC is 3108 today. He has no symptoms for viral infection. So we really don't know what to make of this rise in temperature.
The hardest thing is still trying to get him drink. His IV fluids stopped at 8am and for the last 5 hours he just wouldn't drink much, even said no to milk.
I looked up the side effects of HDMTX. Chills and fever occur very rarely. And his ANC is 3108 today. He has no symptoms for viral infection. So we really don't know what to make of this rise in temperature.
Going home today~~~
I hope I won't need to update the blog as often and our journey will be uneventful going forward.
But we had our scare last night when Lucas had flush cheeks and temperature measured 99.6. We were so relieved that it went away on its own. We just can't deal with another fever or any other unexpected events any more. God only gives one how much one can handle. So please, we can't handle any more!
High dose methotrexate is cleared quickly for Lucas. 24, 42, 48 hour levels were 25, 0.17, and 0.08 respectively, well below the 150, 1, and 0.4 requirements. Lucas is off bicarbonates as of 8am this morning, which is hour 59 from the start of HDMTX.
His glucose is now stable in low 90's. Each day of good eating boost his glucose. We don't need to check him at home as long as he continues to eat well.
We will come back to clinic on Monday for CBC and needle change. Then we will come back Thursday for routine exam.
But we had our scare last night when Lucas had flush cheeks and temperature measured 99.6. We were so relieved that it went away on its own. We just can't deal with another fever or any other unexpected events any more. God only gives one how much one can handle. So please, we can't handle any more!
High dose methotrexate is cleared quickly for Lucas. 24, 42, 48 hour levels were 25, 0.17, and 0.08 respectively, well below the 150, 1, and 0.4 requirements. Lucas is off bicarbonates as of 8am this morning, which is hour 59 from the start of HDMTX.
His glucose is now stable in low 90's. Each day of good eating boost his glucose. We don't need to check him at home as long as he continues to eat well.
We will come back to clinic on Monday for CBC and needle change. Then we will come back Thursday for routine exam.
Tuesday, March 26, 2013
Lucas is 3!
Even though he still claims he is mommy's little baby from time to time, he is definitely growing up. I caught him counting the number of his fingers with Bandaid for each hand today.
Today has been a long day. Maybe because we had tried hard to keep his blood sugar steady for the past 2 days, either with food or with dextrous IV, this morning of fasting was hard for him. At 12 noon Lucas had his 8th spinal tap -- and I scored my first win to go into the operation room with him and stayed till the general anesthesia started to work. He remembered it afterwards and asked me why I wore doctor clothes and hat. It wasn't fun to see what anesthesia does to your kid. But at least he didn't cry hysterically before the anesthesia as I kept telling him that if he cried they would not let me stay with him.
He is very energetic today, had a big late lunch and didn't need a nap. He ate half the meal size ham sandwich for dinner. Then we got a surprise. When nurses switch shifts from 7 to 7:30, a lot of them showed up to sing Happy Birthday with a small cake. Hospital policy says no candles but Lucas was happy with the cake. Just to negate what I said earlier that he didn't like sweet food, he ate 1/4 of the cake (minus the icing).
We didn't start high dose methotrexate until 9pm. This is a complicated chemo and I read the protocol closely. Only to find that the hospital doesn't follow the protocol 100%. They don't check for urine specific gravity before hand -- just to give him bicarbonate for 4 hours. Instead of adjusting bicarbonate to make his urine pH stay in 7 and 8, as specified by protocol, they only care that the pH is above 7, and his last number was 9. They won't check for 36 hour MTX levels. They didn't adhere IT MTX need to happen within +/- 6 hours of IV MTX either. I guess it's like most things in life. Rules are wrote to be broken. The next few nights will be rough as the IV amount he is getting means one diaper every hour. They check MTX levels till 72 hour so the earliest we can get home is Saturday. Things were made even more complicated as Lucas need to stop IV completely to have the vancomysin lock therapy every 24 hours while the chemo needs to flow constant for 24 hours while the IV fluids+bicarbonate needs flow constant for 48 hours. They would have to get another IV in his arm so vancomysin lock could be continued (though chemo can't go through veins so there will be 32 hours in-between today's dose and tomorrow's dose). Just hope the chemo will clear quickly for Lucas and there will be no more complications.
Lucas had his iconic laugh "ha-ha-ha" when the crowd of nurses walked in. It was a little overwhelming for me too as I didn't register that his favorite outpatient chemo clinic nurse showed up as well until they left. Some of these caregivers (mostly nurses and child life workers, rarely doctors) are really like angels. They are dedicated and skilled and seem to really care about the kids. Their calmness and optimism influence me in a very positive way.
Today has been a long day. Maybe because we had tried hard to keep his blood sugar steady for the past 2 days, either with food or with dextrous IV, this morning of fasting was hard for him. At 12 noon Lucas had his 8th spinal tap -- and I scored my first win to go into the operation room with him and stayed till the general anesthesia started to work. He remembered it afterwards and asked me why I wore doctor clothes and hat. It wasn't fun to see what anesthesia does to your kid. But at least he didn't cry hysterically before the anesthesia as I kept telling him that if he cried they would not let me stay with him.
He is very energetic today, had a big late lunch and didn't need a nap. He ate half the meal size ham sandwich for dinner. Then we got a surprise. When nurses switch shifts from 7 to 7:30, a lot of them showed up to sing Happy Birthday with a small cake. Hospital policy says no candles but Lucas was happy with the cake. Just to negate what I said earlier that he didn't like sweet food, he ate 1/4 of the cake (minus the icing).
We didn't start high dose methotrexate until 9pm. This is a complicated chemo and I read the protocol closely. Only to find that the hospital doesn't follow the protocol 100%. They don't check for urine specific gravity before hand -- just to give him bicarbonate for 4 hours. Instead of adjusting bicarbonate to make his urine pH stay in 7 and 8, as specified by protocol, they only care that the pH is above 7, and his last number was 9. They won't check for 36 hour MTX levels. They didn't adhere IT MTX need to happen within +/- 6 hours of IV MTX either. I guess it's like most things in life. Rules are wrote to be broken. The next few nights will be rough as the IV amount he is getting means one diaper every hour. They check MTX levels till 72 hour so the earliest we can get home is Saturday. Things were made even more complicated as Lucas need to stop IV completely to have the vancomysin lock therapy every 24 hours while the chemo needs to flow constant for 24 hours while the IV fluids+bicarbonate needs flow constant for 48 hours. They would have to get another IV in his arm so vancomysin lock could be continued (though chemo can't go through veins so there will be 32 hours in-between today's dose and tomorrow's dose). Just hope the chemo will clear quickly for Lucas and there will be no more complications.
Lucas had his iconic laugh "ha-ha-ha" when the crowd of nurses walked in. It was a little overwhelming for me too as I didn't register that his favorite outpatient chemo clinic nurse showed up as well until they left. Some of these caregivers (mostly nurses and child life workers, rarely doctors) are really like angels. They are dedicated and skilled and seem to really care about the kids. Their calmness and optimism influence me in a very positive way.
Monday, March 25, 2013
Feeding around clock
Ran out of fingers to poke and some now are poked twice. Blood sugar kept dropping last night. 100 at 9:30 (fed him bedtime snack). Dropped to 58 at 12:30, gave him a few bites of peanut butter sandwich (so thankful that no more allergies as peanut butter is one of handful of protein source that he would actually eat). 91 at 1:30am. Dropped to 58 again at 3:30 am. Doctor asked us to give him things to eat again, so we gave more than what we gave at 12:30am. At 6:30 am his glucose measured 57. So it seemed like we have to feed him around the clock to keep his blood sugar at a safe level. And that's mostly what I did today till 2pm. Fed breakfast on and off for 2 hours and had last bite at 10am. At 11:30 his glucose measured 65. Fed lunch on and off till 1:30pm. He took a long nap after wards (well, none of us slept well last night). I went home when Lucas took his nap, spent quality time with Alex running a few errands (and prepare for Lucas's birthday tomorrow!). They didn't eat anything while I was gone and his blood sugar measured 68 at 7:30pm! 6 hours without food and I thought it would be in 40's. He is much more alive later today and hopefully that means his episode of low blood sugar has ended. Surely we will keep watching.
Tonight he will be given dextrous fluid since he need to fast for his lumbar puncture tomorrow (scheduled 12 noon). Glucose measured 101 at 10pm as I just let him eat his bedtime snack. I bought quite a few food items trying to add some variety for snacks. I decide not to rely on hospital food and brought a electrical griddle, a toaster, a slow cooker and a deep fryer (that we use to cook pasta) to hospital. I ordered a rice cooker with steamer that should arrive quickly. I hope the new round of chemo won't be too challenging as we had our share of challenges last 10 days. I don't mind spending more time preparing food for Lucas as long as he eats a decent amount.
Lucas will be 3 tomorrow and he will start interim maintenance. I think that means he will finish chemo when he turns 6. We finished 3 months and have 3 years ahead of us. We know there will be bumps and setbacks, but hopefully we will weather through the difficulties fairly smoothly.
I told Alex that mommy felt sorry that I had spent much more time with Lucas. Alex said he felt sad and angry when I got harsh on him (sometimes just because I got irritated by Lucas but instead vent on Alex) But Alex said that he would never blame mommy. I almost cried when he said that. Alex has really grown up a lot in the past three months. I really appreciate how sweet and accommodating he is. He said he wanted to spend a lot of time with his best friend and asked me to guess who that would be. After 4 guesses I got it right. :) I try to take Alex out to run errands once a week so we could have some quality mother-son alone time.
Tonight he will be given dextrous fluid since he need to fast for his lumbar puncture tomorrow (scheduled 12 noon). Glucose measured 101 at 10pm as I just let him eat his bedtime snack. I bought quite a few food items trying to add some variety for snacks. I decide not to rely on hospital food and brought a electrical griddle, a toaster, a slow cooker and a deep fryer (that we use to cook pasta) to hospital. I ordered a rice cooker with steamer that should arrive quickly. I hope the new round of chemo won't be too challenging as we had our share of challenges last 10 days. I don't mind spending more time preparing food for Lucas as long as he eats a decent amount.
Lucas will be 3 tomorrow and he will start interim maintenance. I think that means he will finish chemo when he turns 6. We finished 3 months and have 3 years ahead of us. We know there will be bumps and setbacks, but hopefully we will weather through the difficulties fairly smoothly.
I told Alex that mommy felt sorry that I had spent much more time with Lucas. Alex said he felt sad and angry when I got harsh on him (sometimes just because I got irritated by Lucas but instead vent on Alex) But Alex said that he would never blame mommy. I almost cried when he said that. Alex has really grown up a lot in the past three months. I really appreciate how sweet and accommodating he is. He said he wanted to spend a lot of time with his best friend and asked me to guess who that would be. After 4 guesses I got it right. :) I try to take Alex out to run errands once a week so we could have some quality mother-son alone time.
Saturday, March 23, 2013
In ER again
We couldn't get him to get up and eat today for breakfast and lunch. He was very irritable and complained tiredness all the time and just kept his eyes close lying in bed. The home care nurse came 12:45 to check how I was doing with the antibiotics. She heard me saying that I'm concerned and took it very seriously. Oh, he is holding his urine again. No pee since 10:30 pm last night.
We were very worried that it was leukemia coming back. But what do we know. Blood sugar = 24. We are glad we came since such blood sugar could be very serious. His ANC is 2400 today and no blast! He does have 3% Myelocyte which is young white blood cell also -- I guess we can still contribute that to the recovery process.
Most likely he will be admitted for sugar fluids tonight. If we cannot convince the doctor that he would eat well at home, we might need to stay here until his chemo next Tuesday. But the thing is that the longer he stays in hospital, the longer it takes him back to normal when he gets home. Hopefully with his ANC and other blood numbers back up, he would feel better while staying at the hospital. He needs to play -- he haven't walked around for 8 days now. I hope they get us to 12th floor soon if they want him to be admitted so he get to go to the play room a bit. He didn't get to go at all last week because of the fever.
We were very worried that it was leukemia coming back. But what do we know. Blood sugar = 24. We are glad we came since such blood sugar could be very serious. His ANC is 2400 today and no blast! He does have 3% Myelocyte which is young white blood cell also -- I guess we can still contribute that to the recovery process.
Most likely he will be admitted for sugar fluids tonight. If we cannot convince the doctor that he would eat well at home, we might need to stay here until his chemo next Tuesday. But the thing is that the longer he stays in hospital, the longer it takes him back to normal when he gets home. Hopefully with his ANC and other blood numbers back up, he would feel better while staying at the hospital. He needs to play -- he haven't walked around for 8 days now. I hope they get us to 12th floor soon if they want him to be admitted so he get to go to the play room a bit. He didn't get to go at all last week because of the fever.
Friday, March 22, 2013
A new sword hanging over us
Most likely this is a false alarm. Lucas's CBC shows blast = 2 for both yesterday and today. Blast is the count of immature white blood cells. A healthy person has up to 5% of blast in his/her bone marrow. But usually blast in peripheral blood is a sign of leukemia. Please remember that Lucas has been leukemia free for 3 months now. Any sign of leukemia cells scares us immensely as that would decrease his chance of survival significantly. However, the attending doctor told me that for chemo patients who have been in the state of neutropenia and fighting an infection, some of them show blast in blood when their ANC recovers. Some premature babies do that too as they also have next-to-nothing immune system. The reason behind that is one's body/bone marrow is trying very hard to get some neutrophils out and in doing so, some immature white blood cells might have come out accidentally. The attending doctor didn't say he would bet his house on this though. He just said that if they were concerned, they would let Lucas have a bone marrow biopsy right away. Instead, they would still let us go home and come back Tuesday (Monday schedule is all packed) for clinic visit then admitted for lumbar puncture and high dose methotrexate.
Later, our own doctor visited us and explained more why they think it's what's called "recovery blast". Lucas's CBC looks great for someone who is recovering from neutropenia. Not everybody's CBC shows blast when they recover, but quite some do. What's most assuring is that they have talked to the pathologist (the one who actually looks at the blood smear) and the blast they saw don't look like leukemia blasts they have in file for Lucas.
So, we will go home and try to enjoy 3 days being home. Lucas eats better and seems to be doing well. We will try not to worry about it too much. Hopefully Tuesday we will see no blast and strong ANC, hemoglobin and platelets. Please keep your fingers crossed for us!
Later, our own doctor visited us and explained more why they think it's what's called "recovery blast". Lucas's CBC looks great for someone who is recovering from neutropenia. Not everybody's CBC shows blast when they recover, but quite some do. What's most assuring is that they have talked to the pathologist (the one who actually looks at the blood smear) and the blast they saw don't look like leukemia blasts they have in file for Lucas.
So, we will go home and try to enjoy 3 days being home. Lucas eats better and seems to be doing well. We will try not to worry about it too much. Hopefully Tuesday we will see no blast and strong ANC, hemoglobin and platelets. Please keep your fingers crossed for us!
Thursday, March 21, 2013
No fever today!
And ANC is 340. The doctors and nurses are getting us ready to go home tomorrow. That is, I have been under training. IV antibiotics Ancef 10pm, 6am, and 2pm, every day. Vanc lock 12:45pm every day. We will go home tomorrow after the 2pm Ancef. Home care nurse is scheduled to come Saturday for the Vanc lock and 2pm Ancef. The training I got for these is much better than AraC -- well, I didn't really get a training for AraC. I just videotaped a random nurse doing it once and watched it a couple of times. I think I feel more comfortable doing it now.
JW's mom and Alex came to visit Lucas yesterday lunch time. The flu season restriction that no visit for kids under 12 is lifted as of last Saturday. It's great to see my healthy kid Alex. He turned 4 1/2 on Tuesday and too bad I didn't give him a 1/2 birthday cake. I hope we will be home next Tuesday for Lucas's 3 year old birthday. The doctors might want us come back Monday/Tuesday for the next round of chemo, which requires hospital stays. Maybe they will give us 1-2 extra days to recover and celebrate. But it was sad to see Lucas saying goodbye to grandma. She probably felt sad also as she doesn't plan to come to US again -- she says she is aging quickly and could be more a person who needs to be taken care of, than a caregiver. We do not plan to go back to China at least until 6 months after his treatment ends and port removed. So it will be at least 3.5 years away. I felt sorry for her -- I think I will feel sadder if leukemia happened to my grandchild than to my child. I guess I feel I'm doing more with a child than I could with a grandchild.
JW is driving his mom to Chicago this afternoon so she can catch the direct flight to go back to China tomorrow morning. My parents arrived late last night/early this morning. Lucas slept from 7:30pm to 7:30am last night -- the best ever for a long time. And he has been napping since 2:30pm. This is a lot of sleep for him as he usually only needs 11 hours of sleep these days. Hopefully this means he is recuperating.
We are taking hygiene to a new level after this blood infection incidence. I just ordered more environmental friendly/toxics-free anti-bacteria sprays and wipes (some for face and hands, some for household surfaces), individually wrapped flossers (so our hands don't need to go into his mouth) and extra soft toothbrushes (so less chance of bleeding gums), and two steam mops/cleaners. 180 degrees steam for 5 seconds would kill 99.9% of the bacteria. A big sigh again. We thought having him live in a glass container is enough, but apparently the bacteria in his own mouth and on his own skin is something we need to guard against as well. I've also got probiotics in the form of gummy bears and chewable tablets, to help him deal with the antibiotics better. There must be other things I could improve. Whatever it takes to preserve the port and decrease the possibility of future infections, I will do it! I'm so glad I can be his 100% devoted mom for 4 weeks. I always miss my maternity leaves!
But just to say that one can only do this much and sometimes the best is not good enough. I was feeding him crackers while the home care training nurse came to teach me around lunch tie. Lucas has a sore on his upper lip and it had a scab. I stopped feeding him and he said he wanted to have the crackers on his own. So I cleaned his hands and let him do it. Within 1 minute he started crying as the scab fell immaturely and it must have hurt and I couldn't tell it was bleeding or not. With the scab off, I could finally tell that it's a canker sore inside of his lip at the edge. I was being very careful to avoid the sore when I was feeding him -- but I was busy with the nurse and he was begging for food. I felt bad that I might have introduced possible bacteria into his blood stream again. This is just so hard. Most importantly we need his ANC higher so he could fight off such things on his own, because this is the most effective and sometimes there's just no way to prevent infection when his ANC is zero. But we also know that as close as one can stick to the chemo protocol, the closer ones outcome is to the empirical cure rate. Nevertheless, if we parents have any say in the future as postponing chemo during low ANC, we will try to bargain for more recovery time. Sometimes 1/2 week is all he needs to get the right balance (if there's one). Starting the second 4 week round of consolidation chemo when his ANC barely made the cutoff turned out to be a very tough period for him. I do wish the doctors and clinics are more flexible so if a delay is needed, one doesn't have to delay a whole week. I will try to see if we can start the next round next Wed/Thurs, instead of either next Monday or the Monday after next.
Thank you for all the emails and messages! And thank you for reading my rambling! :)
JW's mom and Alex came to visit Lucas yesterday lunch time. The flu season restriction that no visit for kids under 12 is lifted as of last Saturday. It's great to see my healthy kid Alex. He turned 4 1/2 on Tuesday and too bad I didn't give him a 1/2 birthday cake. I hope we will be home next Tuesday for Lucas's 3 year old birthday. The doctors might want us come back Monday/Tuesday for the next round of chemo, which requires hospital stays. Maybe they will give us 1-2 extra days to recover and celebrate. But it was sad to see Lucas saying goodbye to grandma. She probably felt sad also as she doesn't plan to come to US again -- she says she is aging quickly and could be more a person who needs to be taken care of, than a caregiver. We do not plan to go back to China at least until 6 months after his treatment ends and port removed. So it will be at least 3.5 years away. I felt sorry for her -- I think I will feel sadder if leukemia happened to my grandchild than to my child. I guess I feel I'm doing more with a child than I could with a grandchild.
JW is driving his mom to Chicago this afternoon so she can catch the direct flight to go back to China tomorrow morning. My parents arrived late last night/early this morning. Lucas slept from 7:30pm to 7:30am last night -- the best ever for a long time. And he has been napping since 2:30pm. This is a lot of sleep for him as he usually only needs 11 hours of sleep these days. Hopefully this means he is recuperating.
We are taking hygiene to a new level after this blood infection incidence. I just ordered more environmental friendly/toxics-free anti-bacteria sprays and wipes (some for face and hands, some for household surfaces), individually wrapped flossers (so our hands don't need to go into his mouth) and extra soft toothbrushes (so less chance of bleeding gums), and two steam mops/cleaners. 180 degrees steam for 5 seconds would kill 99.9% of the bacteria. A big sigh again. We thought having him live in a glass container is enough, but apparently the bacteria in his own mouth and on his own skin is something we need to guard against as well. I've also got probiotics in the form of gummy bears and chewable tablets, to help him deal with the antibiotics better. There must be other things I could improve. Whatever it takes to preserve the port and decrease the possibility of future infections, I will do it! I'm so glad I can be his 100% devoted mom for 4 weeks. I always miss my maternity leaves!
But just to say that one can only do this much and sometimes the best is not good enough. I was feeding him crackers while the home care training nurse came to teach me around lunch tie. Lucas has a sore on his upper lip and it had a scab. I stopped feeding him and he said he wanted to have the crackers on his own. So I cleaned his hands and let him do it. Within 1 minute he started crying as the scab fell immaturely and it must have hurt and I couldn't tell it was bleeding or not. With the scab off, I could finally tell that it's a canker sore inside of his lip at the edge. I was being very careful to avoid the sore when I was feeding him -- but I was busy with the nurse and he was begging for food. I felt bad that I might have introduced possible bacteria into his blood stream again. This is just so hard. Most importantly we need his ANC higher so he could fight off such things on his own, because this is the most effective and sometimes there's just no way to prevent infection when his ANC is zero. But we also know that as close as one can stick to the chemo protocol, the closer ones outcome is to the empirical cure rate. Nevertheless, if we parents have any say in the future as postponing chemo during low ANC, we will try to bargain for more recovery time. Sometimes 1/2 week is all he needs to get the right balance (if there's one). Starting the second 4 week round of consolidation chemo when his ANC barely made the cutoff turned out to be a very tough period for him. I do wish the doctors and clinics are more flexible so if a delay is needed, one doesn't have to delay a whole week. I will try to see if we can start the next round next Wed/Thurs, instead of either next Monday or the Monday after next.
Thank you for all the emails and messages! And thank you for reading my rambling! :)
Wednesday, March 20, 2013
Nervous
Lucas had a fever 103.8 at 12 noon. We are nervously waiting to see if it will come back any time soon. If he still has fever tomorrow (day 7), he will get cat scan for lungs and sinus, and start another antibiotics for possible blood fungi infection (though the blood cultures have been negative). The attending oncologist said he would bet his house on the fever is from low ANC and it's just taking Lucas longer to have ANC recover this time (right, I was not kidding when I said the last four weeks of consolidation chemo had hit him pretty hard). My instinct tells me this is the case also. But we need the fever spell to break so we don't need the CT and extra antibiotics tomorrow.
33% -> 10%
The infectious disease doctor brought the empirical statistics. Using the lock antibiotics therapy, the chance of having the port removed reduces from 33% to 10%. 10% is still higher than what I expected. It's going to even harder since Lucas will undergo the interim maintenance part of his chemotherapy at the same time and his ANC will be low -- means he will rely solely on the antibiotics to fight off the bacteria infection.
ANC 140, last fever 12am
The good news is that he finally got ANC 140, after five days of 0 ANC. Platelets continue to improve while hemoglobin flattened out -- but considering he is still getting a lot of IV fluids that could dilute his blood, stay flat at 11.6 is not bad.
He did have a fever of 102.8 midnight, but it subdued quickly after a dose of Tylenol.
Tuesday, March 19, 2013
Day 1 of 4 week antibiotic treatment for the port
This is by far the hardest days since diagnosis. So hard that I will take 4 weeks of family leave starting today.
We got a visit from Infectious Disease Department yesterday. They have new recommendations for septic patients who have a central line device such as the port, and have had blood culture positive. The bacteria they found in the blood culture on Friday when we came to ER is Staph, the harmless bacteria that lives on human skin. Maybe Lucas bit the inside of his mouth, maybe because he had a sore on his lips, maybe Lucas got a minor cut somewhere on his skin, or maybe he bled a little when we tried to floss or brush his teeth -- we don't know how but this bacteria got into Lucas's blood stream. For healthy people like you and me, no worries as the "segmented neutrophil" type of our white blood cells fights those foreign intruders such as bacteria infection just fine. But for chemo patients with impaired immune system, it could be very dangerous.
The fact that Lucas had a positive blood culture (yes, we asked about the possibility of false positive from contamination, the answer is for Staph it's very unlikely to be false positive), and an implanted port, triggers the following antibiotics therapy:
(1) Ancef Cefazolin, the antibiotics came from the sensitivity test, will be used in IV every 8 hours for a continuous 4 weeks.
(2) Vancocin Vancomycin, the strong broad spectrum antibiotics, will be used for the lock antibiotics therapy. It's measured just enough for Lucas's port, so very tiny amount. It will sit in his port for 1-2 hours, then taken out. Repeat daily for 4 weeks.
What does that mean for me? That means I will have to be his unofficial nurse again! We can't stay in hospital for 4 weeks, insurance won't pay for it and staying in hospital always carries the risk of getting a hospital super bug that's drug resistant. Every 8 hours means the home care nurse can't do it all either, as she has a 40 hour/week schedule also. For the record, insurance usually pays for up to 3 times/week of home care nurse. So when these were all explained to me today, by a big crowd of various medical staff, I have no choice but to say that Yes I will learn to administer the IV abx and the lock abx for the port. He will be accessed continuously for 4 weeks, the longest we have ever experienced. He most probably would get the needle change without the numbing cream. This is so much pressure for me that I immediately contacted my manager that I will need to take 4 weeks off. I'm still waiting to find out the details of family leave but felt the support from my team and have transitioned the work to a coworker this afternoon.
OK, being the nurse is not that bad. Roughly 8 days out of these four weeks Lucas needs to be hospitalized for scheduled chemo (high dose Methotrexate), estimated 4 days in a roll each time. We started 4 week therapy today and expect to go home on Thursday or Friday (his last fever was 12pm today, fingers crossed that no more fever and ANC starts to go up), so 3 days there. We will go to clinic weekly, especially on the off-chemo weeks, so 2 days there. Then I will still try to schedule home care nurse -- though it doesn't seem to be very considerate to let her do the lock since there will be at least 1 hour of wait time.
And we have no alternative anyway. Staph is known to like to hide out and grow on the port itself and there's still a slight chance that it will grow there even if the blood cultures continue to be negative. 4 week therapy is a new recommendation that would lower the possibility (waiting for actual empirical numbers from the infectious disease doctor). It's much better than taking the port out, then wait to install another one, since the surgeries are rather involved.
The good thing is that Lucas's fever is more spaced out and not as high, and his energy level comes back a little. His ANC today is still zero, but WBC, hgB and platelets all improved. The best part is subsequent blood cultures are still negative.
Lucas will need an ECHO to make sure his heart is in good shape since blood infection from Staph could potentially harm the heart. This is usually done day 5-10 from the positive blood culture. Keeping my fingers crossed!
We got a visit from Infectious Disease Department yesterday. They have new recommendations for septic patients who have a central line device such as the port, and have had blood culture positive. The bacteria they found in the blood culture on Friday when we came to ER is Staph, the harmless bacteria that lives on human skin. Maybe Lucas bit the inside of his mouth, maybe because he had a sore on his lips, maybe Lucas got a minor cut somewhere on his skin, or maybe he bled a little when we tried to floss or brush his teeth -- we don't know how but this bacteria got into Lucas's blood stream. For healthy people like you and me, no worries as the "segmented neutrophil" type of our white blood cells fights those foreign intruders such as bacteria infection just fine. But for chemo patients with impaired immune system, it could be very dangerous.
The fact that Lucas had a positive blood culture (yes, we asked about the possibility of false positive from contamination, the answer is for Staph it's very unlikely to be false positive), and an implanted port, triggers the following antibiotics therapy:
(1) Ancef Cefazolin, the antibiotics came from the sensitivity test, will be used in IV every 8 hours for a continuous 4 weeks.
(2) Vancocin Vancomycin, the strong broad spectrum antibiotics, will be used for the lock antibiotics therapy. It's measured just enough for Lucas's port, so very tiny amount. It will sit in his port for 1-2 hours, then taken out. Repeat daily for 4 weeks.
What does that mean for me? That means I will have to be his unofficial nurse again! We can't stay in hospital for 4 weeks, insurance won't pay for it and staying in hospital always carries the risk of getting a hospital super bug that's drug resistant. Every 8 hours means the home care nurse can't do it all either, as she has a 40 hour/week schedule also. For the record, insurance usually pays for up to 3 times/week of home care nurse. So when these were all explained to me today, by a big crowd of various medical staff, I have no choice but to say that Yes I will learn to administer the IV abx and the lock abx for the port. He will be accessed continuously for 4 weeks, the longest we have ever experienced. He most probably would get the needle change without the numbing cream. This is so much pressure for me that I immediately contacted my manager that I will need to take 4 weeks off. I'm still waiting to find out the details of family leave but felt the support from my team and have transitioned the work to a coworker this afternoon.
OK, being the nurse is not that bad. Roughly 8 days out of these four weeks Lucas needs to be hospitalized for scheduled chemo (high dose Methotrexate), estimated 4 days in a roll each time. We started 4 week therapy today and expect to go home on Thursday or Friday (his last fever was 12pm today, fingers crossed that no more fever and ANC starts to go up), so 3 days there. We will go to clinic weekly, especially on the off-chemo weeks, so 2 days there. Then I will still try to schedule home care nurse -- though it doesn't seem to be very considerate to let her do the lock since there will be at least 1 hour of wait time.
And we have no alternative anyway. Staph is known to like to hide out and grow on the port itself and there's still a slight chance that it will grow there even if the blood cultures continue to be negative. 4 week therapy is a new recommendation that would lower the possibility (waiting for actual empirical numbers from the infectious disease doctor). It's much better than taking the port out, then wait to install another one, since the surgeries are rather involved.
The good thing is that Lucas's fever is more spaced out and not as high, and his energy level comes back a little. His ANC today is still zero, but WBC, hgB and platelets all improved. The best part is subsequent blood cultures are still negative.
Lucas will need an ECHO to make sure his heart is in good shape since blood infection from Staph could potentially harm the heart. This is usually done day 5-10 from the positive blood culture. Keeping my fingers crossed!
No Tylenol for 12 hours and temperature is below 100
No Tylenol for 12 hours and the temperature is below 100 now. Blood culture is negative for almost 3 days. Hopefully, this is the end of this episode. Blood infection is the worst situation that any leukemia child want to avoid. We met a very cute girl in clinic about one month ago. Her bacterial infection story scared us to death when we firstly learned that Lucas's blood culture showed positive.
We keep asking our doctors what we can do to prevent this happening. Unfortunately, common bacterial on everybody's skin could post great danger to Lucas, whose ANC number was 0 yesterday. Basically , it means that he has absolutely NO self defense system against any kind of bacterial right now.
We keep asking our doctors what we can do to prevent this happening. Unfortunately, common bacterial on everybody's skin could post great danger to Lucas, whose ANC number was 0 yesterday. Basically , it means that he has absolutely NO self defense system against any kind of bacterial right now.
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