The labs are back and show that Jessie still doesn't have much of an immune system right now. She is having a delayed reaction to the last chemo she received in the hospital. Her counts are dropping.
The good news is they may have bottomed out. There are signs in her blood work (monocytes in particular ) that are rising which is a precursor to her neutrophils rising. This should be an indication that her immune system will be coming back shortly.
Until then we pray that she doesn't get a fever. If she does get a fever and her counts are low, she will need to be admitted back into Children's hospital until she gets better.
I have one word for Jessie, "purell"!!
Thursday, September 13, 2012
Wednesday, September 12, 2012
Back at School- Say a Prayer
Jessie ended up staying home for an extended weekend (from after the transfusions on Thursday night through Sunday night). She got in her car to leave and couldn't get it started!
After 20 mins of trying, we finally got it started, but I couldn't send her in a car that I wasn't sure would start when she needed it. So I gave her my car to drive back to school and I kept her car (I think she got the better deal!)
We dropped her car off to be checked out on Monday night. Still waiting to hear what they think is wrong.
Meanwhile, Jessie got her blood drawn today. We should get the results back tomorrow to see how her platelets are doing.
She was having some petechiae bruising (develops when the lining of small blood vessels is damaged, allowing blood cells to escape into the skin and tissue. It usually looks like freckles or tiny red dots) on her neck, ears and under her eyes.
After 20 mins of trying, we finally got it started, but I couldn't send her in a car that I wasn't sure would start when she needed it. So I gave her my car to drive back to school and I kept her car (I think she got the better deal!)
We dropped her car off to be checked out on Monday night. Still waiting to hear what they think is wrong.
Meanwhile, Jessie got her blood drawn today. We should get the results back tomorrow to see how her platelets are doing.
She was having some petechiae bruising (develops when the lining of small blood vessels is damaged, allowing blood cells to escape into the skin and tissue. It usually looks like freckles or tiny red dots) on her neck, ears and under her eyes.
Wednesday, September 5, 2012
Just When I Thought I Could Breathe
Good news is Jessie's molecular bone marrow test has come back for the third time- negative for leukemia cells.
Not so good news is that her counts are dropping at college. She had blood work done yesterday just before she was supposed to start her 3 oral chemo meds.
Doctors say there could be many reasons why this is happening. The three most likely reasons are:
1. A delayed reaction to her last IV chemotherapy
2. A blood clot in the tube which would skew the results
3. A virus.
Docs say they are NOT worried about this being leukemia because they have such great results from bone marrow tests.
Long story short - they want to see her tomorrow for an exam and for more blood work and they will decide where to go from here.
Stay tuned...
9pm- so the doctor said it is most likely a delayed response to her last IV chemo which she had in late July. He said we need to keep supporting her body until it has a chance to recover.
Meanwhile she just has to be super cautious not to catch anything. If she does and gets a fever with low counts then she will be admitted back into Children's hospital. However, if she gets a fever and her counts are not low then she can probably just get IV antibiotics ad not be admitted.
She got two bags of blood tonight. Luckily they had both of them there already at the hospital. The reason she is so hard to match is that she has what is called anti-Jka antibody in addition to being O- . Apparently there are many more blood types than the ones we all learned about in school! Now they tell me! The nurses talked her into coming home tonight instead of driving 2 hours back to school. Hopefully she will get some rest.
Not so good news is that her counts are dropping at college. She had blood work done yesterday just before she was supposed to start her 3 oral chemo meds.
Doctors say there could be many reasons why this is happening. The three most likely reasons are:
1. A delayed reaction to her last IV chemotherapy
2. A blood clot in the tube which would skew the results
3. A virus.
Docs say they are NOT worried about this being leukemia because they have such great results from bone marrow tests.
Long story short - they want to see her tomorrow for an exam and for more blood work and they will decide where to go from here.
Stay tuned...
9pm- so the doctor said it is most likely a delayed response to her last IV chemo which she had in late July. He said we need to keep supporting her body until it has a chance to recover.
Meanwhile she just has to be super cautious not to catch anything. If she does and gets a fever with low counts then she will be admitted back into Children's hospital. However, if she gets a fever and her counts are not low then she can probably just get IV antibiotics ad not be admitted.
She got two bags of blood tonight. Luckily they had both of them there already at the hospital. The reason she is so hard to match is that she has what is called anti-Jka antibody in addition to being O- . Apparently there are many more blood types than the ones we all learned about in school! Now they tell me! The nurses talked her into coming home tonight instead of driving 2 hours back to school. Hopefully she will get some rest.
Thursday, August 23, 2012
Beautiful girl, beautiful place
Tuesday, August 21, 2012
Take 2
Jessie's bone marrow had not recovered enough by last Friday from the last chemo so they could not do the bone marrow biopsy or the lumbar puncture that day. Today we are going to try again. Also they have scheduled the port removal for today so hopefully it will all be done in one shot!
We are waiting to do her labs right now to see if she "qualifies" for 2/3 of the procedures today. Say a prayer that she passes.
12:30pm- port out - now doing bone marrow and LP.
4pm- all successful and coming home.
We are waiting to do her labs right now to see if she "qualifies" for 2/3 of the procedures today. Say a prayer that she passes.
12:30pm- port out - now doing bone marrow and LP.
4pm- all successful and coming home.
Tuesday, August 14, 2012
Independence Day@!!!! Almost.... Blood shortage
We were told earlier today that Jessie would be discharged today, but since her hemoglobin has been running in the 7 range they wanted to give her a transfusionn first before she goes home.
Seems kind of weird, I know. Now the nurse just told us that the blood bank says there will be a delay in the transfusion. It has been on order since noon today, but Jessie is O- and rH- and needs certain antigens in the blood. The nurse said that the blood bank is calling around to local places to try to find the right blood for her. They said it might be very late tonight by the time she is finished getting it so she might have to stay one more night. Hang in there Jessie. Just a little bit longer.....
Seems kind of weird, I know. Now the nurse just told us that the blood bank says there will be a delay in the transfusion. It has been on order since noon today, but Jessie is O- and rH- and needs certain antigens in the blood. The nurse said that the blood bank is calling around to local places to try to find the right blood for her. They said it might be very late tonight by the time she is finished getting it so she might have to stay one more night. Hang in there Jessie. Just a little bit longer.....
Monday, August 6, 2012
Mixed Emotions and more GREAT NEWS!
The past week has been relatively quiet. Nausea is getting less and less. Interestingly, her ANC has not fallen very far this time as in the past. Today her ANC was 1640. With this number, she should be home. I asked the doctor today if it stays up, when can we expect to get her home? He said we need to see how she does later this week. He thinks it still might fall some more.
Jess was put on a dairy free diet today. For some reason, her phosphorus is too high. I don't know the cellular reasoning behind it yet, but I did ask. They are watching all aspects closely.
My feelings were hurt a few days ago when she told me that she needed some space. She didn't want me to come every day anymore. I do realize that this is a good thing. It just didn't feel so good then :-). I know that it means she is feeling better, taking charge of her own medical care, growing up, taking responsibility, etc... but when your child is sick, a mother wants to be there. I think she is preparing me for the end of August when she leaves for college. It won't be as hard if I'm not seeing her everyday. At least, that's my theory!!
GREAT NEWS- the bone marrow biopsy came back from the last check done on July 27 again negative for any leukemia cells! The doctor mentioned it in passing (and frankly I wasn't sure what test he was talking about because he used acronyms). It wasn't until later in the day that I figured it out. He said it came back negative which was expected after the last negative, but it was good to have it on file.
When Jessie does get out after this inpatient stay, she will have to return once a month for blood work and then every three months for bone marrow biopsies. These are outpatient procedures so hopefully NO MORE LONG HOSPITAL STAYS!! This will continue for 4 years. Yes, I said FOUR years. Dr. Schore said that this type of cancer rarely comes back, but if it does we want to catch it early with the bone marrow biopsy. I told the doctor that he will follow Jessie all the way through her college career!! Wow. It's a good thing St. Mary's allows freshman to have cars!
Looks like I'll have my life back after this seven month nightmare. Thanks to all the people who made life a little easier during this trial. Special thanks to Dr. Reuven Schore, Melissa Wills and all the nurses on the 4th floor at Children's.
Jess was put on a dairy free diet today. For some reason, her phosphorus is too high. I don't know the cellular reasoning behind it yet, but I did ask. They are watching all aspects closely.
My feelings were hurt a few days ago when she told me that she needed some space. She didn't want me to come every day anymore. I do realize that this is a good thing. It just didn't feel so good then :-). I know that it means she is feeling better, taking charge of her own medical care, growing up, taking responsibility, etc... but when your child is sick, a mother wants to be there. I think she is preparing me for the end of August when she leaves for college. It won't be as hard if I'm not seeing her everyday. At least, that's my theory!!
GREAT NEWS- the bone marrow biopsy came back from the last check done on July 27 again negative for any leukemia cells! The doctor mentioned it in passing (and frankly I wasn't sure what test he was talking about because he used acronyms). It wasn't until later in the day that I figured it out. He said it came back negative which was expected after the last negative, but it was good to have it on file.
When Jessie does get out after this inpatient stay, she will have to return once a month for blood work and then every three months for bone marrow biopsies. These are outpatient procedures so hopefully NO MORE LONG HOSPITAL STAYS!! This will continue for 4 years. Yes, I said FOUR years. Dr. Schore said that this type of cancer rarely comes back, but if it does we want to catch it early with the bone marrow biopsy. I told the doctor that he will follow Jessie all the way through her college career!! Wow. It's a good thing St. Mary's allows freshman to have cars!
Looks like I'll have my life back after this seven month nightmare. Thanks to all the people who made life a little easier during this trial. Special thanks to Dr. Reuven Schore, Melissa Wills and all the nurses on the 4th floor at Children's.
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