Fast forward a few weeks, Jessie was put back on the medicine with a slightly lower dose. So far so good. She has a bone marrow check coming up next Tuesday which is two days before Thanksgiving so I hope to find out about the expensive test that they did regarding her metabolizing the chemo. Maybe that will give us some answers. I wil update when we get the bone marrow results back in two weeks.
Tuesday, November 19, 2013
Counts back up!
I picked Jessie up from CNMC that night and she did go back to college the next day. The doctors took Jessie off of her oral chemo med and after a few weeks her counts are back up. One of the nurses was surprised that this was her first time stopping the medication stating that usually patients stop several times over the course of treatment. I think Jessie's body decided that it had had enough!
Monday, October 21, 2013
10/21/13 update- low counts during maintenance
Mike and I got up this morning itching to go down to Children's hospital, but we also wanted to wait a while so Jessie would have time to sleep. We figured it must have been a long night in the ER at St Mary's hospital then waiting 2 hours for the Children's transfer team in the ambulance to arrive. Then two hours back to Children's ER just to wait to be admitted back to the 4th floor east wing. We arrived about 10:40 am. She had already called on my cell phone to check on us. She was receiving her first bag of blood (Thank God to everyone who donates) when we arrived. She had received 2 units almost 4 weeks ago when she had a regular check up and her counts were low. Her attending oncologist came to see us while we were there. He and the team are currently mulling over several theories as to WHY Jessie is experiencing low counts during her maintenance phase of chemo. He said it is rare that one would need a transfusion during maintenance and especially rare that she would need two transfusions within a month. Imagine that! Another rarity for Jessie... So they are temporarily suspending the chemo oral medication to see if that helps. Their first thought was that the leukemia is coming back, but they are doing bone marrow testing for that and she has been negative for leukemia cells since April 2012- Praise God! Secondly, a virus may be the cause this time but I think they are looking deeper because she wasn't sick last time. They are also doing an expensive test that will tell us how her body is metabolizing the chemo. It may be that her body is not metabolizing it well and there is a build up that is causing the low counts. Another cause of low counts is sxcessive bleeding, but Jessie hasnt had anything like that. At any rate it seems that this current blood transfusion will hold her until next Tuesday when she comes for her normal monthly visit. More blood work will be done then and maybe we will have more answers then questions at that point. She texted me and said after her iV antibiotics she will be ready to be discharged so I'm going to pick her up tonight and then back to St Marys tomorrow if she feels well.
Say a prayer!
Sunday, October 20, 2013
Fast Forward to 10/20/13
Jessie has been doing well with the diamox during the atra. She had a good summer and is now back at St Marys College of Md. She called tonight to say she has a fever of 101.5. She was on the way to the hospital to get blood work and get checked out as per the protocol. After the ER doc conferred with the oncology team, he gave Jessie a choice of whether she wanted to be admitted at St Marys hospital or Children's. she chose transport back to Children's and is being admitted tonight when she arrives. Mike and I decided that we would go down first thing in the morning unless she calls tonight and needs us. I told her I would keep my phone with me just in case. She is in good spirits and feeling ok. I'll write an update as things progress.
Thursday, June 6, 2013
Diamox working
So Jessie had a bumpy road after the spinal tap for a few days, but since she was done with that session of Atra , her extra production of csf decreased daily. She did miss 3 weeks of college was was tough to recover from. She ended up withdrawing from her chemistry class and tried her best to finish strong in calculus and her design class.
I'm a little hesitant to talk about her current new maintenance cycle since it is going well so far. I don't want to jinx it. She had her bone marrow check Monday morning two weeks ago. It came back negative for leukemia cells so she is still in remission. Praise God!
Her maintenance cycle has ended now and she didn't have the debilitating headaches like before. Thanks to her oncology team for figuring out the problem and working on a solution so my Jessie doesn't suffer.
We are going to go on the vacation soon this summer that Jessie and I missed last year due to her long inpatient hospital stay. How sweet it will be to be at the beach with family!!!
Thursday, March 28, 2013
Lumbar puncture completed
Jessie's spinal pressure was 42. It is supposed to be about 15-18.
Although a rare side effect atra can cause increase in production of cerebral spinal fluid.
They took off 16cc of fluid. Dr Schore said there's a limit to how much you can take off and he said that her body will make more in 2-3 hours. Now that we know what's causing the headaches we can combat them with medicine to decrease her pressure. She was taking a medicine called Diamox to do just that but apparently she's not taking enough of it. He tripled her dose per day and may increase it further depending on how she does. But the good news is that we definitely know what the problem is and now we can fix it!!
Although a rare side effect atra can cause increase in production of cerebral spinal fluid.
They took off 16cc of fluid. Dr Schore said there's a limit to how much you can take off and he said that her body will make more in 2-3 hours. Now that we know what's causing the headaches we can combat them with medicine to decrease her pressure. She was taking a medicine called Diamox to do just that but apparently she's not taking enough of it. He tripled her dose per day and may increase it further depending on how she does. But the good news is that we definitely know what the problem is and now we can fix it!!
They're back :-(
Atra, atra, atra. Tsk tsk tsk as I shake my head. Apparently atra can in rare cases cause an increased production of cerebral spinal fluid. Of course we all know Jessie is a rare creature who got a rare cancer and now is getting a rare side effect. (Atra is the main chemo med that cures Jessie's type of cancer).
The scene is set at the beginning of the week:
Her headache seemed to be manageable so she went back to college last Monday evening. On Tues afternoon Jessie called me to say that her headache went up to a 5 when she tried to lie down and was not feeling well at all.
I drove to St Marys to get her and took her straight to Children's ER. We got there at 9:30 pm. She was hydrated and they gave her some oxycodone and sent us home at 5am.
She slept most of the day on Wed but her headache continued to get worse. The oncologist told us to come back to the clinic today since it wasn't getting any better and to not take anything by mouth because she would probably be getting an lp. Trying to follow instructions, Jessie didn't even take pain meds overnight and got much worse. At 6 am this morning she couldn't stand it anymore. We came straight to the Children's ER where she is now on morphine and feeling much better. They are getting ready to do the lumbar puncture now to relieve the pressure.
The scene is set at the beginning of the week:
Her headache seemed to be manageable so she went back to college last Monday evening. On Tues afternoon Jessie called me to say that her headache went up to a 5 when she tried to lie down and was not feeling well at all.
I drove to St Marys to get her and took her straight to Children's ER. We got there at 9:30 pm. She was hydrated and they gave her some oxycodone and sent us home at 5am.
She slept most of the day on Wed but her headache continued to get worse. The oncologist told us to come back to the clinic today since it wasn't getting any better and to not take anything by mouth because she would probably be getting an lp. Trying to follow instructions, Jessie didn't even take pain meds overnight and got much worse. At 6 am this morning she couldn't stand it anymore. We came straight to the Children's ER where she is now on morphine and feeling much better. They are getting ready to do the lumbar puncture now to relieve the pressure.
Monday, March 25, 2013
Headaches gone!
Great news! Her headaches are gone. She said, " this is the best I have felt in a week. I think that was it mom". "IT" was probably inter cranial pressure. Her oncologist ordered medicine to decrease the fluid and the pressure in her eyes after hearing that she was still having mild but annoying headaches over the weekend. It seems that the medicine is working! hallelujah!! The pressure is most likely caused by the ATRA medicine that she is taking which is the main "cure" for her type of cancer. She only has to take the ATRA for 2 weeks at the beginning of each 84 day cycle. She is in the beginning of her 3rd cycle. The ATRA will be finished this Friday for this cycle and she will be weaned off the headache medicine.
Friday, March 22, 2013
Fast forward to March 22
So Jessie has been doing ok with her visits at Children's until now. She just had her 2nd bone marrow check last Friday. Afterwards she felt a little bit of a headache which she attributed to coming off of the anesthesia. She rested Saturday and was getting ready to go back to St Mary's College of Md the next day. She was home the previous week for spring break.
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.
6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.
6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!
Friday, January 4, 2013
Happy New Year 2013!
Hi! Hope everyone had a great new year!
Jessie ended this year with a bang- we got her test results back from her bone marrow test on 12/18/12 (the first of many in the next few years) and it was negative for cancer! Also she met Santana Moss when she was there that day! It just happened that he was visiting kids in the oncology floor in Children's Hospital that day. He was so down to earth and modest. He was giving her a pep talk about hanging in there and sticking it out even though it was tough. What a great guy! I think I was more excited than Jessie to meet him. She is not much of a sports buff. Now if it had been a famous author....then she would have been pumped! But she was a good sport and was very polite and accommodating.
Her hair is starting to grow out as you can see and she is looking forward to her second semester at St Mary's.
Jessie ended this year with a bang- we got her test results back from her bone marrow test on 12/18/12 (the first of many in the next few years) and it was negative for cancer! Also she met Santana Moss when she was there that day! It just happened that he was visiting kids in the oncology floor in Children's Hospital that day. He was so down to earth and modest. He was giving her a pep talk about hanging in there and sticking it out even though it was tough. What a great guy! I think I was more excited than Jessie to meet him. She is not much of a sports buff. Now if it had been a famous author....then she would have been pumped! But she was a good sport and was very polite and accommodating.
Her hair is starting to grow out as you can see and she is looking forward to her second semester at St Mary's.
Thursday, November 29, 2012
After Thanksgiving 2012
Hi Everyone,
Hope you had a wonderful Thanksgiving! Jessie has had two check ups (with lab work only) so far at Children's Hospital, one in October and November. Her first bone marrow check will be in December right after she finishes her first semester of college! So far, so good.
Interestingly enough the doctors base the level of oral chemo medicine on her ANC level. Right now it is a bit too high which means they may need to increase her dosage on the next round. Her ANC is in the 2000 range (good, right?) That's what we wanted before! Now they want it to be 750-1500 and if she gets a virus it mostly likely will dip low like it did when she first entered college. So for now we have a reprieve. She is doing very well and is enjoying her freshman year.
This is Jessie getting checked out by her oncologist Dr Schore and Melissa Wills, nurse practitioner.
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Hope you had a wonderful Thanksgiving! Jessie has had two check ups (with lab work only) so far at Children's Hospital, one in October and November. Her first bone marrow check will be in December right after she finishes her first semester of college! So far, so good.
Interestingly enough the doctors base the level of oral chemo medicine on her ANC level. Right now it is a bit too high which means they may need to increase her dosage on the next round. Her ANC is in the 2000 range (good, right?) That's what we wanted before! Now they want it to be 750-1500 and if she gets a virus it mostly likely will dip low like it did when she first entered college. So for now we have a reprieve. She is doing very well and is enjoying her freshman year.
This is Jessie getting checked out by her oncologist Dr Schore and Melissa Wills, nurse practitioner.
.JPG)
Tuesday, October 16, 2012
Oral Chemotherapy Medications and Cycles
Jessie has been on two new oral chemotherapy medications for almost a month now plus the ATRA for the first 14 days of this cycle. I am told by the oncologist, Dr. Schore at Children's that she will have 9 cycles of oral medicines, each cycle lasts 84 days. I'm not sure how much time in between, so if you do the math just counting her time in each cycle that is a little over 2 years of oral chemo medicine. Each month she gets an examine by the oncology doctor and nurse practitioner and gets her blood work done. Every third visit she gets the added bonus of having a bone marrow check done. Those will be the fun visits deciding whether to let her drive back to college afterwards. I'm not sure about that one!
Jessie said that the medicine at first was zapping all her energy. I was glad to hear last week that she is starting to get her energy back. She has her first "visit" tomorrow at Children's and I am going to meet her down there for that. I think it will feel odd not having gone down there for a while after SO many visits over the last 8 months. I will post again letting you know how everything goes tomorrow!!
Caio for now.
Update: all went well at the appt. her numbers are all good. Jessie is a little nauseous at times from these medicines and spoke to the doctor about tweaking the anti-nausea medicine.
Jessie said that the medicine at first was zapping all her energy. I was glad to hear last week that she is starting to get her energy back. She has her first "visit" tomorrow at Children's and I am going to meet her down there for that. I think it will feel odd not having gone down there for a while after SO many visits over the last 8 months. I will post again letting you know how everything goes tomorrow!!
Caio for now.
Update: all went well at the appt. her numbers are all good. Jessie is a little nauseous at times from these medicines and spoke to the doctor about tweaking the anti-nausea medicine.
Wednesday, September 19, 2012
Immunity Returns!
Yeah! Jessie's blood work this week shows that her immunity has come up and she is ready to start her oral chemotherapy pills.
Her ANC is up to 1318 and her platelets are up to 113. Her hemoglobin is holding steady at 9.1 since her blood transfusions 2 weeks ago. Wow. Time flies. Feels like yesterday when I met her at Children's and she got the transfusions.
More good news - her college is so great. The nurse practitioner, Lee couldn't reach her by phone one day last week and was so concerned she looked up Jessie's schedule and sent someone to do a "well check" on her! What service! You don't get that at a big school. I'm so glad she is at St Mary's. They are taking great care of her. I feel like I have someone who really cares about her welfare and is my eyes and ears down there. Thank you Lee!
So tomorrow Jessie will start her oral meds and hopefully things will go a little smoother from now on.
I'll let you know! :-)
Her ANC is up to 1318 and her platelets are up to 113. Her hemoglobin is holding steady at 9.1 since her blood transfusions 2 weeks ago. Wow. Time flies. Feels like yesterday when I met her at Children's and she got the transfusions.
More good news - her college is so great. The nurse practitioner, Lee couldn't reach her by phone one day last week and was so concerned she looked up Jessie's schedule and sent someone to do a "well check" on her! What service! You don't get that at a big school. I'm so glad she is at St Mary's. They are taking great care of her. I feel like I have someone who really cares about her welfare and is my eyes and ears down there. Thank you Lee!
So tomorrow Jessie will start her oral meds and hopefully things will go a little smoother from now on.
I'll let you know! :-)
Thursday, September 13, 2012
Blood work is back
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"!!
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"!!
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.
Tuesday, July 31, 2012
Medical MJ??
Well, tonight is the last night that a bag of chemo will ever run through Jessie's veins. Hallelujah. After tonight, hopefully the days will only get better as far as side effects from the chemo. Last few days have been a little tough with the nausea/vomiting, but Jessie is hanging in there. She is looking forward to college and has that thought to hang on to. We applied for her to have an air conditioner in her room which she just received a call about this afternoon. She got it and was very happy to know that she won't be sweltering the first few weeks at school in a non-air conditioned dorm. The person in charge also said that she could have a single room if she wanted. She declined saying that she wanted the full college experience.
Jess does have times where she manages to keep food down. She just polished off a bowl of fruit which was in the refrig from last night. She has to eat while she's feel good because it changes so quickly. I hope it stays down. She is on a "wave" of anti-nausea meds right now, benedryl, ativan and zofran. A friend suggested medical MJ if all else fails! I'm beginning to think that might be a good idea!!
Jess does have times where she manages to keep food down. She just polished off a bowl of fruit which was in the refrig from last night. She has to eat while she's feel good because it changes so quickly. I hope it stays down. She is on a "wave" of anti-nausea meds right now, benedryl, ativan and zofran. A friend suggested medical MJ if all else fails! I'm beginning to think that might be a good idea!!
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