Sorry I didn't update yesterday when I got the lab results in, things have been crazy the past 24 hrs. We had a winter storm move through that put several inches of ice on the ground; which has shut our town down completely (we live in southeastern NC); kids have not been in school since Monday, and unsure if they will go back Friday or Monday.
Things are looking stable, that's the best word I can use right now. Counts are not going up, and they aren't really going down either (his platelets are going back and forth, but still in the normal range). We have decreased his steroids again, but this time the doctor only decreased it by 5mg (instead of the 10mg as we have been doing the past two weeks); so we are at 85mg right now on that (13 ml in the morning and 15 ml in the evening), other meds are still the same, no mention of taking him off CellCept, I have about 6 more weeks left in my fridge on that, and I guess I will ask at the next appointment about either a refill or are we weaning him off that.
The Allergy and Immunology Clinic in Chapel Hill called me in the latter part of the week, last week and scheduled him an appointment to start allergy testing, which is good news; bad news is, its not until the end of April. Since he had no viruses or infections going on when he was admitted into the hospital throughout the month of December, they just want to make sure its not allergy related causing these flare ups of his counts to rapidly decrease out of the blue. We did mention that we got our first REAL Christmas tree, 4 days before he went into the hospital. They were "hmm" about it, but said its probably a coincidence, but they will test for that just incase. They said to expect to be there for hours for testing, and our appointment isn't even until 12:30PM, going to be a long day. Luckily our family vacation is the week before, so we should feel refreshed and ready to tackle this next hurdle together.
Here are this week's counts:
Hemoglobin: 11 (down from 11.4)
Platelets: 195 (down from 229)
WBC: 4.1 (no change)
Retic: 1.9 (up from 1.2)
His Complete Neutrophil count is also good.
Jordan is doing good, face has broken out a little bit, since we are now weaning him off the steroids (but his face is like that when not on steroids, thanks to teenage hormones). Still has the PICC line in, and I have become a pro on changing the dressing every week, and doing the flushes everyday. But I cannot wait to not have to play nurse anymore, its mentally exhausting. He is definitely a trooper in all of us, but I know he is ready to get back to his normal life. Even with being absent all of December, from school, still got A's/B's on his report card; very proud of him.
Next blood draw is next Monday, continued thoughts and prayers.
Wednesday, January 29, 2014
Tuesday, January 21, 2014
1/21/14 Weekly Update
Doctor just called me with yesterday's results, everything has increased, which is awesome! Moving in the right direction.
Compared to last week's labwork:
Hemoglobin: 11.4 (was a 10)-Not in the normal range yet, but getting there
Platelets: 229 (was 210)-Normal range
WBC: 4.1 (was 3.1)-Almost in the normal range, but not quite there yet
Bilirubin: 0.8 (was 1.2)-He is officially in normal range
We are decreasing his steroids again, from 100mg a day, to 90mg a day. So thats a big jump, because we were only decreasing by 5mg a week, but this week we are decreasing by 10mg. So hopefully his counts stay stabilized, and we still get good lab work results next week.
Nurse will come draw labs on Monday, next week. We are not scheduled to see the doctor until February 17th, as long as bloodwork stays good each week.
Jordan, himself, is doing very good. Back to his normal teenage self. Looks and feels great. He cannot wait to get rid of that PICC line, so I am hoping when we see the doctor on the 17th of next month, we can talk about removing it.
I will update again next week.
Compared to last week's labwork:
Hemoglobin: 11.4 (was a 10)-Not in the normal range yet, but getting there
Platelets: 229 (was 210)-Normal range
WBC: 4.1 (was 3.1)-Almost in the normal range, but not quite there yet
Bilirubin: 0.8 (was 1.2)-He is officially in normal range
We are decreasing his steroids again, from 100mg a day, to 90mg a day. So thats a big jump, because we were only decreasing by 5mg a week, but this week we are decreasing by 10mg. So hopefully his counts stay stabilized, and we still get good lab work results next week.
Nurse will come draw labs on Monday, next week. We are not scheduled to see the doctor until February 17th, as long as bloodwork stays good each week.
Jordan, himself, is doing very good. Back to his normal teenage self. Looks and feels great. He cannot wait to get rid of that PICC line, so I am hoping when we see the doctor on the 17th of next month, we can talk about removing it.
I will update again next week.
Wednesday, January 15, 2014
Quick Update-1/15/14
Doctor just called me from Chapel Hill about Monday's lab work results; everything looks great, and looks to be that his counts have finally stabilized.
Hemoglobin is at 10
Platelets are at 210
WBC is at 3.1
So although the numbers are not in the normal range for a kid his age (minus the platelets), he is holding steady and he is remaining out of the danger zone (still have to be careful around viruses and sicknesses going around, since his WBC is still low). We are going to decrease his steroids a little more (right now he is at 60mg in the morning and 50mg at night); now we are going to do 50mg twice a day, starting tomorrow. Weaning him has to be a slow process, 1)so he doesn't have any reactions 2)got to make sure his counts will continue to be stable as we decrease the steroids slowly. I asked about his CellCept, and they want to keep him on it as we have been (which is 760mg a day).
Also we are now down to once a week labs (we started off 3 times a week, then twice a week); so I am happy about that. He was suppose to get lab work done tomorrow, but they are canceling that, and we will get lab work done on Monday before he goes in to get his inhalation.
Hemoglobin is at 10
Platelets are at 210
WBC is at 3.1
So although the numbers are not in the normal range for a kid his age (minus the platelets), he is holding steady and he is remaining out of the danger zone (still have to be careful around viruses and sicknesses going around, since his WBC is still low). We are going to decrease his steroids a little more (right now he is at 60mg in the morning and 50mg at night); now we are going to do 50mg twice a day, starting tomorrow. Weaning him has to be a slow process, 1)so he doesn't have any reactions 2)got to make sure his counts will continue to be stable as we decrease the steroids slowly. I asked about his CellCept, and they want to keep him on it as we have been (which is 760mg a day).
Also we are now down to once a week labs (we started off 3 times a week, then twice a week); so I am happy about that. He was suppose to get lab work done tomorrow, but they are canceling that, and we will get lab work done on Monday before he goes in to get his inhalation.
Monday, January 13, 2014
Monday Update-1/13/14
Jordan had his weekly appointment with Dr. Gold this morning. Everything went well, he is very pleased with how Jordan is looking and feeling. Said he has had a lot of sleepless nights because of him (join the club buddy-LOL).
Lymph nodes are good, not swollen anymore; spleen is still swollen, but its slowly going back to normal (again, they told us last month that it could take months before its back down to regular size).
They did some blood work to check his counts, but also to check his liver enzymes, etc. I do not have those results, I'm going with the assumption that no news is good news. I am anticipating a phone call tomorrow or so, just because Dr. Gold said if the blood work looks good, we will decrease his Prednisolone some more (right now we are at 60mg in the morning and 50mg in the evening-along with 760mg of CellCept a day, and the other med's he has to take because of being on Prednisolone). He also said if the blood work looks good, we will go down to once a week labs (right now we are at twice a week). So we will see how that goes. We are also at monthly appointments with Dr. Gold., instead of the weekly visits. Which means we can now see Dr. Gold here in town, when he comes down for clinic work at the hospital, instead of traveling all the way to Chapel to see him. Long as Jordan's counts stay good, they start dropping, then back to Chapel we go. I assume we will be back up there eventually, because Jordan still has a PICC line in., and at some point, that will have to be removed; but with the blood work needing to be done 1-2 a week still, it will remain in for now.
Speaking of PICC line, I got to experience changing the PICC line dressing today. Scary experience! They didn't do it at the clinic, and truthfully I wasn't comfortable having it done there anyway (its not like the clinic in Chapel-almost like a regular pediatric office). I had to take a crash course on changing it when Jordan got it placed in on December 18th (two hour crash course mind you); but that was on a dummy doll. The removal of the dressing is not bad, its cleaning and making sure the actual PICC itself doesn't move; that, and everything HAS to be sterile (its a must)! I don't think I did too bad, Jordan said I did good (LOL); I'll have Amber (his nurse) check it out tomorrow when she comes to see him; I think she will be pleased.
We just locked ourselves up in my bedroom, I got him comfortable laying down on my bed, with his arm propped up on a couple of pillows, and we took our time with everything; took me about 30 min's from start to finish. Now that I have done it for the first time and got that out of the way, I am pretty comfortable doing it now.
Next week (Monday), we do have an appointment, in the afternoon, for Jordan to receive his Pentam inhalation solution (300 mg into his lungs) with the respiratory therapist (here at our local hospital-should be in and out within an hour). He had this done in Chapel, the day after Christmas for the first time. Since his immune system is suppressed right now, his risk of developing pneumonia is higher; so we have to do this once a month (order is in for 12 months-so we will see if this is a monthly thing until December), to keep his lungs clear of any fluid, etc. I'm fine with that. Luckily he wont have to miss any school, since its a Holiday; next appointment after that is February 17th with Dr. Gold (here in town); of course as long as his counts stay stable.
Will keep everyone updated as new news pops up; continued thoughts & prayers of course! ;)
Lymph nodes are good, not swollen anymore; spleen is still swollen, but its slowly going back to normal (again, they told us last month that it could take months before its back down to regular size).
They did some blood work to check his counts, but also to check his liver enzymes, etc. I do not have those results, I'm going with the assumption that no news is good news. I am anticipating a phone call tomorrow or so, just because Dr. Gold said if the blood work looks good, we will decrease his Prednisolone some more (right now we are at 60mg in the morning and 50mg in the evening-along with 760mg of CellCept a day, and the other med's he has to take because of being on Prednisolone). He also said if the blood work looks good, we will go down to once a week labs (right now we are at twice a week). So we will see how that goes. We are also at monthly appointments with Dr. Gold., instead of the weekly visits. Which means we can now see Dr. Gold here in town, when he comes down for clinic work at the hospital, instead of traveling all the way to Chapel to see him. Long as Jordan's counts stay good, they start dropping, then back to Chapel we go. I assume we will be back up there eventually, because Jordan still has a PICC line in., and at some point, that will have to be removed; but with the blood work needing to be done 1-2 a week still, it will remain in for now.
Speaking of PICC line, I got to experience changing the PICC line dressing today. Scary experience! They didn't do it at the clinic, and truthfully I wasn't comfortable having it done there anyway (its not like the clinic in Chapel-almost like a regular pediatric office). I had to take a crash course on changing it when Jordan got it placed in on December 18th (two hour crash course mind you); but that was on a dummy doll. The removal of the dressing is not bad, its cleaning and making sure the actual PICC itself doesn't move; that, and everything HAS to be sterile (its a must)! I don't think I did too bad, Jordan said I did good (LOL); I'll have Amber (his nurse) check it out tomorrow when she comes to see him; I think she will be pleased.
We just locked ourselves up in my bedroom, I got him comfortable laying down on my bed, with his arm propped up on a couple of pillows, and we took our time with everything; took me about 30 min's from start to finish. Now that I have done it for the first time and got that out of the way, I am pretty comfortable doing it now.
Next week (Monday), we do have an appointment, in the afternoon, for Jordan to receive his Pentam inhalation solution (300 mg into his lungs) with the respiratory therapist (here at our local hospital-should be in and out within an hour). He had this done in Chapel, the day after Christmas for the first time. Since his immune system is suppressed right now, his risk of developing pneumonia is higher; so we have to do this once a month (order is in for 12 months-so we will see if this is a monthly thing until December), to keep his lungs clear of any fluid, etc. I'm fine with that. Luckily he wont have to miss any school, since its a Holiday; next appointment after that is February 17th with Dr. Gold (here in town); of course as long as his counts stay stable.
Will keep everyone updated as new news pops up; continued thoughts & prayers of course! ;)
Saturday, January 11, 2014
Saturday Update-1/11/14
Dr Gold was concerned about the ulcers in Jordan's mouth, so he wanted us to go do a throat culture to make sure it wasn't anything other than ulcers. While at the doctor's, we went ahead and did some blood work.
Everything looks good blood work wise, and everything is up compared with the Monday and Thursday blood work.
WBC is 3.1 (4.5-13 is normal) so that is up from the 2.9 from Monday.
RBC is 3.5 (4.5-5.3 is normal), so that is slightly down from the 3.7 from Monday.
HGB is 10 (13-16 is normal), so that is up from the 9.6 from Thursday.
Platelets are 210 (150-450 is normal), and that is down from the 211 from Thursday.
Bilirubin level is 1.2 (0.2-1.0 is normal) so that is still slowly dropping (which is good).
Retic count is 1.2 (0.5-1.8 is normal) and that is WAY DOWN from the 8.5 from earlier this month; so very pleased with that.
Neutrophils are 67, which is still in a normal range.
WBC and HGB are still going back and forth from high to a little low; so his levels are still not stabilized yet; but at least they are staying out of the danger zone for now.
No results on the throat culture yet, hopefully know in a day or two. Appointment with Dr. Gold Monday morning. Did get a script for the "Magic Mouthwash" so that gives him some relief from the ulcers deep down his throat.
Will update again on Monday; continued thoughts and prayers please =)
Everything looks good blood work wise, and everything is up compared with the Monday and Thursday blood work.
WBC is 3.1 (4.5-13 is normal) so that is up from the 2.9 from Monday.
RBC is 3.5 (4.5-5.3 is normal), so that is slightly down from the 3.7 from Monday.
HGB is 10 (13-16 is normal), so that is up from the 9.6 from Thursday.
Platelets are 210 (150-450 is normal), and that is down from the 211 from Thursday.
Bilirubin level is 1.2 (0.2-1.0 is normal) so that is still slowly dropping (which is good).
Retic count is 1.2 (0.5-1.8 is normal) and that is WAY DOWN from the 8.5 from earlier this month; so very pleased with that.
Neutrophils are 67, which is still in a normal range.
WBC and HGB are still going back and forth from high to a little low; so his levels are still not stabilized yet; but at least they are staying out of the danger zone for now.
No results on the throat culture yet, hopefully know in a day or two. Appointment with Dr. Gold Monday morning. Did get a script for the "Magic Mouthwash" so that gives him some relief from the ulcers deep down his throat.
Will update again on Monday; continued thoughts and prayers please =)
Friday, January 10, 2014
Thursday Update-1/10/14
I don't have all the numbers in front of me, Chapel Hill called me while I was driving, so I couldn't write everything down. His nurse hasn't received the lab work email yet, so she hasn't been able to send it to me just yet (I will update this when I get that email).
His counts have dropped a little bit...this is what I could remember from all the numbers she was throwing out at me.
WBC 2.9 (2.9 on Monday)-I think she said this number, again, not quite sure until I see the lab work myself.
Hemoglobin: 9.6 (11.6 on Monday)
Platelets-211 (359 on Monday)
They aren't concerned about the drop in numbers, because they have lowered his steroids a little bit, and he is still on a strong dosage of CellCept. Basically his body needs to learn to do everything on its own again, instead of relying on these med's; its going to take some time. We have an appointment Monday morning, here in town (Dr. Gold and his team are coming down here for their monthly clinic work); so that gives us a little break from driving; so hopefully Monday will give us a higher number count (continued prayers and thoughts are appreciated).
We also have an appointment on the 21st in Chapel Hill, he is due for his monthly breathing treatment (I am unsure of the name of this treatment and not quite exactly sure what the treatment is for). He received it when he was admitted into Chapel (Christmas week) for the first time, and Brian was with him then. So I'll have to ask about it at Monday's appointment.
Right now he is suffering from the beginning stages of thrush (has a few ulcers under his top lip and in the back of his throat). We ran out of his Fluconazole (another name for Diflucan) on Monday, had the doctor call in another script for him through CVS; and it was on backorder. So I have been fighting them all week on filling the script; FINALLY was able to get it filled this afternoon; so hopefully in a day or two his mouth will feel better.
Next update will be Monday afternoon; until then prayers and thoughts please.
His counts have dropped a little bit...this is what I could remember from all the numbers she was throwing out at me.
WBC 2.9 (2.9 on Monday)-I think she said this number, again, not quite sure until I see the lab work myself.
Hemoglobin: 9.6 (11.6 on Monday)
Platelets-211 (359 on Monday)
They aren't concerned about the drop in numbers, because they have lowered his steroids a little bit, and he is still on a strong dosage of CellCept. Basically his body needs to learn to do everything on its own again, instead of relying on these med's; its going to take some time. We have an appointment Monday morning, here in town (Dr. Gold and his team are coming down here for their monthly clinic work); so that gives us a little break from driving; so hopefully Monday will give us a higher number count (continued prayers and thoughts are appreciated).
We also have an appointment on the 21st in Chapel Hill, he is due for his monthly breathing treatment (I am unsure of the name of this treatment and not quite exactly sure what the treatment is for). He received it when he was admitted into Chapel (Christmas week) for the first time, and Brian was with him then. So I'll have to ask about it at Monday's appointment.
Right now he is suffering from the beginning stages of thrush (has a few ulcers under his top lip and in the back of his throat). We ran out of his Fluconazole (another name for Diflucan) on Monday, had the doctor call in another script for him through CVS; and it was on backorder. So I have been fighting them all week on filling the script; FINALLY was able to get it filled this afternoon; so hopefully in a day or two his mouth will feel better.
Next update will be Monday afternoon; until then prayers and thoughts please.
Monday, January 6, 2014
Monday Update-1/6/14
Saturday's Lab-Work showed his counts back on the rise, which was great news!
This is compared to Thursday's Lab Results:
WBC: 2.7 (was 2.4)-Normal is 4.5-13.0
Hemoglobin: 10.4 (was 9.4)-Normal is 13.7-17.5
Hematocrit: 31.1 (was 27.8)-Normal is 40.0-51.0
Platelets: 403 (371)-Normal is 150-450
Neutrophils: 62 (was 55)-Normal is 47-67
Today we headed up to Chapel Hill for a follow up appointment after a week's worth of blood work here at home, and since its been 10 days since he was discharged from the hospital. Did blood work again, and once again his counts continue to rise...
This is compared to Saturday's lab results:
WBC: 2.9 (was 2.7)-Normal is 4.5-13.0
Hemoglobin: 11.6 (was 10.4)-Normal is 13.7-17.5
Hematocrit: 32.4 (was 31.1)-Normal is 40.0-51.0
Platelets: 359 (403)-Normal is 150-450 (They dropped a little, but no concern, because that's high for Jordan)
***Did not get a Neutrophil count this time, not sure why. But his retic count was 8.5 on Saturday, and Dr. Gold said that's perfect because that means his body is producing the cells it needs to.***
Jordan got his last dose of Vincristine (YAY), and Dr. Gold also wants to start weaning him off the Prednisolone; which is going to be a long process. Right now Jordan is on 60mg twice a day, the new dosage is 60mg in the morning and 50mg in the evening. Each week we will decrease by 10mg, as long as his counts are handling it okay. He is still on all the other prescriptions, including CellCept.
Jordan starts back to school tomorrow (everyone went back today, from Christmas break), after being out the entire month of December; but with restrictions and limitations. No PE participation (due to his PICC line) and of course not picking up anything more than 10lbs with his left arm/hand (where the PICC line is located). I am hoping we can have that PICC line removed by the end of the month; we will see what his counts continue to do. I am super nervous about sending him back; kids can be jerks sometimes, and I am just worried someone will hit the PICC line area, not realizing its a serious area. Thankfully the incision is in the inner arm area, so hopefully he will be okay. I will be picking him up from school, in the afternoons for awhile; until his WBC is in the normal range.
No traveling to Chapel Hill next week, they are coming to our local hospital for clinical work, so we get to see them here in town (which is a nice break). Blood work twice a week (Mondays and Thursdays) from our nurse, and continued PICC dressing changes on Mondays (he also had that changed today too).
Next update later on in the week, after I get Thursday's blood work results. Those that are dealing with the feet of snow and the arctic blast, stay safe and warm! <3
This is compared to Thursday's Lab Results:
WBC: 2.7 (was 2.4)-Normal is 4.5-13.0
Hemoglobin: 10.4 (was 9.4)-Normal is 13.7-17.5
Hematocrit: 31.1 (was 27.8)-Normal is 40.0-51.0
Platelets: 403 (371)-Normal is 150-450
Neutrophils: 62 (was 55)-Normal is 47-67
Today we headed up to Chapel Hill for a follow up appointment after a week's worth of blood work here at home, and since its been 10 days since he was discharged from the hospital. Did blood work again, and once again his counts continue to rise...
This is compared to Saturday's lab results:
WBC: 2.9 (was 2.7)-Normal is 4.5-13.0
Hemoglobin: 11.6 (was 10.4)-Normal is 13.7-17.5
Hematocrit: 32.4 (was 31.1)-Normal is 40.0-51.0
Platelets: 359 (403)-Normal is 150-450 (They dropped a little, but no concern, because that's high for Jordan)
***Did not get a Neutrophil count this time, not sure why. But his retic count was 8.5 on Saturday, and Dr. Gold said that's perfect because that means his body is producing the cells it needs to.***
Jordan got his last dose of Vincristine (YAY), and Dr. Gold also wants to start weaning him off the Prednisolone; which is going to be a long process. Right now Jordan is on 60mg twice a day, the new dosage is 60mg in the morning and 50mg in the evening. Each week we will decrease by 10mg, as long as his counts are handling it okay. He is still on all the other prescriptions, including CellCept.
Jordan starts back to school tomorrow (everyone went back today, from Christmas break), after being out the entire month of December; but with restrictions and limitations. No PE participation (due to his PICC line) and of course not picking up anything more than 10lbs with his left arm/hand (where the PICC line is located). I am hoping we can have that PICC line removed by the end of the month; we will see what his counts continue to do. I am super nervous about sending him back; kids can be jerks sometimes, and I am just worried someone will hit the PICC line area, not realizing its a serious area. Thankfully the incision is in the inner arm area, so hopefully he will be okay. I will be picking him up from school, in the afternoons for awhile; until his WBC is in the normal range.
No traveling to Chapel Hill next week, they are coming to our local hospital for clinical work, so we get to see them here in town (which is a nice break). Blood work twice a week (Mondays and Thursdays) from our nurse, and continued PICC dressing changes on Mondays (he also had that changed today too).
Next update later on in the week, after I get Thursday's blood work results. Those that are dealing with the feet of snow and the arctic blast, stay safe and warm! <3
Thursday, January 2, 2014
Thursday Bloodwork Update-1/2/14
Just got today's lab results, and he is starting to drop again in numbers. Not by much, but still...
This is compared to Monday's lab results
WBC: 2.4 (was 2.8)-Normal is 4.5-13.0
Hemoglobin: 9.4 (was 10.5)-Normal is 13.7-17.5
Hematocrit: 27.8 (was 30.7)-Normal is 40.0-51.0
Platelets: 371 (was 192)-Normal is 150-450 (only thing rising)
Neutrophils: 55 (was 62)-Normal is 47-67
So not a good lab day for us; we go back to Chapel on Monday to receive his Vincristine, PICC dressing change, and see what his counts are then, it was an appointment that was going to happen whether his counts were good or not. I pray they are up and not even more down. Going to pack for the both of us Sunday night, just incase we end up having to stay, but I am hoping not. He has been doing so well the past week, I was hoping for good results as we have been getting with the other two lab results.
Going to be a long four days, being on pins and needles watching him. Please please send good blood work results our way for Monday. He wants to go back to school so bad, and was hoping he would be able to go back on Monday with the rest of his peers. So lets hope he can go back on Tuesday.
This is compared to Monday's lab results
WBC: 2.4 (was 2.8)-Normal is 4.5-13.0
Hemoglobin: 9.4 (was 10.5)-Normal is 13.7-17.5
Hematocrit: 27.8 (was 30.7)-Normal is 40.0-51.0
Platelets: 371 (was 192)-Normal is 150-450 (only thing rising)
Neutrophils: 55 (was 62)-Normal is 47-67
So not a good lab day for us; we go back to Chapel on Monday to receive his Vincristine, PICC dressing change, and see what his counts are then, it was an appointment that was going to happen whether his counts were good or not. I pray they are up and not even more down. Going to pack for the both of us Sunday night, just incase we end up having to stay, but I am hoping not. He has been doing so well the past week, I was hoping for good results as we have been getting with the other two lab results.
Going to be a long four days, being on pins and needles watching him. Please please send good blood work results our way for Monday. He wants to go back to school so bad, and was hoping he would be able to go back on Monday with the rest of his peers. So lets hope he can go back on Tuesday.
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