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.
Showing posts with label Blood Infection. Show all posts
Showing posts with label Blood Infection. Show all posts
Saturday, March 23, 2013
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.
Monday, March 18, 2013
Mixed news and a conversation with Lucas in Chinese
Good news is 2nd and 3rd blood cultures continue to be negative. And the sensitivity test nailed down an ABX (short for antibiotics) so we stopped Zosyn and Vancomysin. The huge syringes are replaced by this small syringe of Cefazolin.
The not so good news is Lucas's fever was 103.4 at 4am, then subdued with Tylenol and was fever free for almost 5 hours. Then 102.6 again at 12 noon. It's a real agony to be in the middle of lingering fever when your kid has ANC = 0. But this shall pass and we will be home soon!
His GI tract is not at the optimal condition yet either. He has no appetite and we are not too encouraging him to eat, to be easy on his system.
Lucas was fever-free last night for a while and enjoyed his Transformer Animated Series. He said he liked Bulkhead best because Bulkhead is very powerful.
The not so good news is Lucas's fever was 103.4 at 4am, then subdued with Tylenol and was fever free for almost 5 hours. Then 102.6 again at 12 noon. It's a real agony to be in the middle of lingering fever when your kid has ANC = 0. But this shall pass and we will be home soon!
His GI tract is not at the optimal condition yet either. He has no appetite and we are not too encouraging him to eat, to be easy on his system.
Lucas was fever-free last night for a while and enjoyed his Transformer Animated Series. He said he liked Bulkhead best because Bulkhead is very powerful.
Sunday, March 17, 2013
Fever up and down , blood culture negative for 24 hours
Lucas's fever is still up and down, but he looks better than yesterday. His yesterday's blood culture was negative for 24 hours. Keep finger crossed.
fever still high. gram positive cocci
Last couple of days is probably the hardest since the initial 10 days of induction. The blood culture positive result is very worrisome as bacteria and fungus infection can be very invasive for septic patients. They have to rely solely on the right kind of anti-biotics to help fight. We have heard and read too many horror stories from other ALL parents.
I'm doing some reading on antibiotics. Lucas's initial blood culture turned positive after 14 hours and they identify the bug as gram positive cocci . Lucas has been on broad spectrum Zosyn (Piperacillin/tazobactam, a Penicillin combination) since admission. He started Vancomycin that also treats the nasty MRSA bugs. I also learned the term febrile neutrophenia, a condition of combination of fever, infection, and low ANC, seen often in cancer patients receiving chemo drugs. Lucas's ANC has been around 200 and his fever is still on with three doses of Vancomycin. His second blood culture is still negative after 18 hours -- which is what we want to see.
We want to see his fever subdues today and second and subsequent blood cultures stay negative. Even though the doctor told us the bug Lucas has in the blood is very common (healthy human beings wouldn't need antibiotics) and easy to treat, it's still scary when he still has a fever that Tylenol hasn't helped to subdue. Lucas's hemoglobin was 8.1 yesterday afternoon and he got a blood transfusion as they foresee further dip as he gets more IV fluids (kind of a dilution effect). We haven't seen any significant improvement in energy or appetite. We hope he will feel better today and have some energy to get off bed a little and eat more.
The doctors don't think he will continue his chemo next week. Most likely we won't come back for Chemo until the Monday after next.
I'm doing some reading on antibiotics. Lucas's initial blood culture turned positive after 14 hours and they identify the bug as gram positive cocci . Lucas has been on broad spectrum Zosyn (Piperacillin/tazobactam, a Penicillin combination) since admission. He started Vancomycin that also treats the nasty MRSA bugs. I also learned the term febrile neutrophenia, a condition of combination of fever, infection, and low ANC, seen often in cancer patients receiving chemo drugs. Lucas's ANC has been around 200 and his fever is still on with three doses of Vancomycin. His second blood culture is still negative after 18 hours -- which is what we want to see.
We want to see his fever subdues today and second and subsequent blood cultures stay negative. Even though the doctor told us the bug Lucas has in the blood is very common (healthy human beings wouldn't need antibiotics) and easy to treat, it's still scary when he still has a fever that Tylenol hasn't helped to subdue. Lucas's hemoglobin was 8.1 yesterday afternoon and he got a blood transfusion as they foresee further dip as he gets more IV fluids (kind of a dilution effect). We haven't seen any significant improvement in energy or appetite. We hope he will feel better today and have some energy to get off bed a little and eat more.
The doctors don't think he will continue his chemo next week. Most likely we won't come back for Chemo until the Monday after next.
Saturday, March 16, 2013
In hospital
High fever -- 103 as soon as Tylenol wears off. Blood culture positive and waiting for specification.
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