I had my platelets routinely checked last Friday. While on 5 mg of prednisone every other day they dropped from 97,000 to 60,000. I am now suppose to be prednisone free (yeah..no more hot flashes!!), and was suppose to have platelets checked in 2 weeks, but since they are getting close to the "worrisome" level (50,000) I am suppose to have them checked again this Thursday. This is getting frustrating because I dont know whats going on and what is causing this!! I guess that is what Dr's are for, right?
Denise
Sunday, November 14, 2010
Wednesday, November 3, 2010
Our little buddy is doing great!!!
Dr Hennessy (the hematologist from Childrens) called me last Friday and recommended we have Lucas's platelets checked yet one more time. This would be like heel stick number 439?? Poor little guy!! Yesterday I took him to the clinic (they know us by name there), and today the clinic called with the results. Lucas's platelets were 269,000!!!! WOW!! I think we can officially say he is a healthy boy now!! He constantly wants to eat and is gaining weight like crazy. Cant wait to see how much he weighs at his 2 month check up later this month.
Denise had her platelets checked last Friday and they dropped from 158,000 to 97,000. The oncologist continues to ween her off the prednisone while re-checking platelets. We will see what happens to them when she is off prednisone altogether. The oncologist is pretty sure Denise has ITP, and it just happened to be uncovered during pregnancy.
Hope you all have a great week! We will keep you posted of any updates!
The Mills Family
Denise had her platelets checked last Friday and they dropped from 158,000 to 97,000. The oncologist continues to ween her off the prednisone while re-checking platelets. We will see what happens to them when she is off prednisone altogether. The oncologist is pretty sure Denise has ITP, and it just happened to be uncovered during pregnancy.
Hope you all have a great week! We will keep you posted of any updates!
The Mills Family
Friday, October 22, 2010
Latest Update
Well, we got great news this week. Both Denise and Lucas had blood tests and both of them came in at an excellent number. Lucas' has risen to 158, 000 while Denise's are now up to 148,000. Childrens' in Minneapolis seems to think he is out of the woods, but would like to do a couple of more tests in the next month just to make sure. Denise has an appointment with her doctor next Friday and we will know more then, but all signs look good there as well.
We will keep everyone updated! Thanks!
Troy, Denise, Libby and Lucas
We will keep everyone updated! Thanks!
Troy, Denise, Libby and Lucas
Monday, October 11, 2010
GREAT NEWS!!!!
Just a quick update....Lucas's platelet level rose from 97,000 last Monday to 148,000 today.
This is GREAT news for our little guy and hopefully it means the good antibodies are finally winning over in his body. The medical team at Children's recommended we have them checked again (here at home) in about a week and a half to make sure the level is holding steady. Pray for excellent numbers again next week!!
Just a quick update....Lucas's platelet level rose from 97,000 last Monday to 148,000 today.
This is GREAT news for our little guy and hopefully it means the good antibodies are finally winning over in his body. The medical team at Children's recommended we have them checked again (here at home) in about a week and a half to make sure the level is holding steady. Pray for excellent numbers again next week!!
Wednesday, October 6, 2010
Monday's Lab Results
Well, Lucas had another blood draw on Monday and this one did not come back as good. His platelets had dropped from 191000 last Thursday to 97000 on Monday. And with Lucas' pediatrician out sick, Denise and I didn't see this as a very good sign.
But Denise called Children's Hospital and spoke with the team that we dealt with when we were there for the IVIG treatment. They were not too worried as they don't start getting concerned until the levels drop below 50000. Then today, Lucas' pediatrician spoke with them and they said that for 3 months after IVIG treatment, his platelet levels are going to look like a roller coaster. That was reassuring at least from the standpoint that this is all normal.
So, the little guy will have another blood test next Monday and we will see where he lands!
Thanks everyone!
Troy, Denise, Lucas and Libby
But Denise called Children's Hospital and spoke with the team that we dealt with when we were there for the IVIG treatment. They were not too worried as they don't start getting concerned until the levels drop below 50000. Then today, Lucas' pediatrician spoke with them and they said that for 3 months after IVIG treatment, his platelet levels are going to look like a roller coaster. That was reassuring at least from the standpoint that this is all normal.
So, the little guy will have another blood test next Monday and we will see where he lands!
Thanks everyone!
Troy, Denise, Lucas and Libby
Friday, October 1, 2010
A Quick Update
Hello Family and Friends!
Just a quick note to give an update on Lucas and Denise after yesterday's tests.
Lucas' platelets were up to 194,000, which is EXCELLENT! He will have a couple of more tests in the coming weeks, but it looks like the IVIG treatment he had worked and he will not have ITP. Our fingers are crossed.
Denise met with an oncologist yesterday and her platelets were up also. We really don't know if that is from the prednisone she has been on or the ITP weakening, but they are going to wean her off the prednisone and she will have another blood test next week. It could turn out that she has/had gestational ITP and not idiopathic ITP. Gestational would be just pregnancy related while the idiopathic would something Denise would have to live with from now on.
All the reading we have done on ITP, it is not all doom and gloom. It looks like most people live with it with very little ramifications. The oncologist yesterday basically said they don't get concerned until the platelets get below 20,000. So that was reassuring as Denise's platelets have never been that low.
Hopefully we will get more good news next week! Thanks for all of your thoughts and prayers!
Troy, Denise, Libby and Lucas
Just a quick note to give an update on Lucas and Denise after yesterday's tests.
Lucas' platelets were up to 194,000, which is EXCELLENT! He will have a couple of more tests in the coming weeks, but it looks like the IVIG treatment he had worked and he will not have ITP. Our fingers are crossed.
Denise met with an oncologist yesterday and her platelets were up also. We really don't know if that is from the prednisone she has been on or the ITP weakening, but they are going to wean her off the prednisone and she will have another blood test next week. It could turn out that she has/had gestational ITP and not idiopathic ITP. Gestational would be just pregnancy related while the idiopathic would something Denise would have to live with from now on.
All the reading we have done on ITP, it is not all doom and gloom. It looks like most people live with it with very little ramifications. The oncologist yesterday basically said they don't get concerned until the platelets get below 20,000. So that was reassuring as Denise's platelets have never been that low.
Hopefully we will get more good news next week! Thanks for all of your thoughts and prayers!
Troy, Denise, Libby and Lucas
Monday, September 27, 2010
MONDAY'S LAB RESULTS!!!
Lucas had his followup in Alexandria today and everything came back excellent. His platelets were up to 161,000 (120,000 is the benchmark) and his billirubin was down to 11! It doesn't mean we are out of the woods yet, but right now it looks like the antibodies are left over from Denise and not some he has been producing. He will have another blood test Thursday and probably be followed closely for the next few weeks.
That is all from here. I will post more when I know more. Thanks everyone!!!
Troy, Denise, Libby and Lucas
That is all from here. I will post more when I know more. Thanks everyone!!!
Troy, Denise, Libby and Lucas
Sunday, September 26, 2010
One Week Checkup - Off To Childrens We Go!
Well, what an eventful last couple of days we have had around here!!! For those of you that know we got sent to Children's Hospital in Minneapolis on Thursday, sorry I haven't updated this sooner with this information.
On Thursday, Lucas had his one week checkup. Everything was fine when we saw his pediatrician, but he had to have some blood work done also. That is when things started to get a little "hairy".
When Lucas left the hospital, his billirubin was 9 and his platelet level was at 90,000 (they like them to be around 120,000). But with Denise having low platelets, the level he was sent home with was more than acceptable and had actually rose since birth. Well, after two rounds of blood tests (the second just to confirm the numbers), his platelets had dropped down to 10,000 and his billirubin had risen to 17 (jaundice). Well, we were sent to get a "billi-blanket" for him while the pediatrician called Children's to see what should be done with that low of a platelet count. They basically told us we had to get down there that day. They were concerned with blood that thin and unable to clot that Lucas could have a bleed somewhere and we would not even know it. So, after quickly packing a few things, we were off to Minneapolis to see if we could get to the bottom of this.
After a stressful ride down there (massive rain storms with several spin outs on the Interstate), we made it safely and made our way to the Specialty Clinics. There, we were seen by a team of three hematologists and they did their blood draws. After some consultation, we were then admitted into the hospital where Lucas would receive an IVIG treatment (IV Immune Globulin).
Lucas has preliminarily been diagnosed with ITP, or Immune (idiopathic) thrombocytopenic purpura. What that means is that he has an antibody that is attacking his platelets, causing his levels to drop. He more than likely picked this up from Denise during pregnancy, and we are not sure how she got it. It seems to be something that just shows up and no one really knows why. By giving Lucas IVIG, they are hoping to confuse the antibodies and get them to attack each other until his body gets strong enough to fight them off on his own.
So, after a fairly sleepless Thursday night at Children's Hospital, they did some more blood tests on Lucas. His billirubin had dropped to 12.9 and his platelets were up to 45,000. They were surprised that his platelets had risen that much in that short of time after the IVIG, as the peak is usually not realized until day three after treatment. So they were more than happy to discharge us and we were more than happy to go.
Tomorrow (Monday), he has a follow up appointment at the clinic in Alexandria where they will do another blood draw and check his platelets and billirubin. The results will be sent to Children's and they will coordinate with Alexandria on treatment/follow ups.
So, what does ITP mean for Lucas? Well, we don't know as he is only a week old. Best case scenario, his body fights it off and there will be nothing for us to worry about. Worst case scenario, he will have the condition his whole life, which isn't a bad thing. It just means we will have to monitor his platelet levels and watch for any abnormal bruising. But for the most part, he will have a normal life.
Denise will have an appointment with a hematologist on Thursday to try and see what the reason is for her low platelets. More than likely her diagnosis will be the same thing. If it is, it is something you can live a fairly normal life with. We actually had a nurse at Children's that has had it for 23 years. She got it in her third pregnancy. She said she gets tired from time to time and has to watch what medicines she takes, but otherwise, she hasn't really had to change her life style. But, if it is worst case scenario, they would have to remove Denise's spleen. But that is the extreme and hardly happens.
And now, a few pictures for you!
Here is what was waiting for Denise and Lucas when they came home from the hospital!
Troy, Libby and Lucas, all asleep in the chair one night! That is Libby's teddy bear, not daddy's!
And this one is from today, Libby and Lucas sharing daddy's lap during the Vikings game.
That is about all from here. We will update more as we know more! Thanks for your thoughts and prayers everyone!
On Thursday, Lucas had his one week checkup. Everything was fine when we saw his pediatrician, but he had to have some blood work done also. That is when things started to get a little "hairy".
When Lucas left the hospital, his billirubin was 9 and his platelet level was at 90,000 (they like them to be around 120,000). But with Denise having low platelets, the level he was sent home with was more than acceptable and had actually rose since birth. Well, after two rounds of blood tests (the second just to confirm the numbers), his platelets had dropped down to 10,000 and his billirubin had risen to 17 (jaundice). Well, we were sent to get a "billi-blanket" for him while the pediatrician called Children's to see what should be done with that low of a platelet count. They basically told us we had to get down there that day. They were concerned with blood that thin and unable to clot that Lucas could have a bleed somewhere and we would not even know it. So, after quickly packing a few things, we were off to Minneapolis to see if we could get to the bottom of this.
After a stressful ride down there (massive rain storms with several spin outs on the Interstate), we made it safely and made our way to the Specialty Clinics. There, we were seen by a team of three hematologists and they did their blood draws. After some consultation, we were then admitted into the hospital where Lucas would receive an IVIG treatment (IV Immune Globulin).
Lucas has preliminarily been diagnosed with ITP, or Immune (idiopathic) thrombocytopenic purpura. What that means is that he has an antibody that is attacking his platelets, causing his levels to drop. He more than likely picked this up from Denise during pregnancy, and we are not sure how she got it. It seems to be something that just shows up and no one really knows why. By giving Lucas IVIG, they are hoping to confuse the antibodies and get them to attack each other until his body gets strong enough to fight them off on his own.
So, after a fairly sleepless Thursday night at Children's Hospital, they did some more blood tests on Lucas. His billirubin had dropped to 12.9 and his platelets were up to 45,000. They were surprised that his platelets had risen that much in that short of time after the IVIG, as the peak is usually not realized until day three after treatment. So they were more than happy to discharge us and we were more than happy to go.
Tomorrow (Monday), he has a follow up appointment at the clinic in Alexandria where they will do another blood draw and check his platelets and billirubin. The results will be sent to Children's and they will coordinate with Alexandria on treatment/follow ups.
So, what does ITP mean for Lucas? Well, we don't know as he is only a week old. Best case scenario, his body fights it off and there will be nothing for us to worry about. Worst case scenario, he will have the condition his whole life, which isn't a bad thing. It just means we will have to monitor his platelet levels and watch for any abnormal bruising. But for the most part, he will have a normal life.
Denise will have an appointment with a hematologist on Thursday to try and see what the reason is for her low platelets. More than likely her diagnosis will be the same thing. If it is, it is something you can live a fairly normal life with. We actually had a nurse at Children's that has had it for 23 years. She got it in her third pregnancy. She said she gets tired from time to time and has to watch what medicines she takes, but otherwise, she hasn't really had to change her life style. But, if it is worst case scenario, they would have to remove Denise's spleen. But that is the extreme and hardly happens.
And now, a few pictures for you!
Here is what was waiting for Denise and Lucas when they came home from the hospital!
Troy, Libby and Lucas, all asleep in the chair one night! That is Libby's teddy bear, not daddy's!
And this one is from today, Libby and Lucas sharing daddy's lap during the Vikings game.
That is about all from here. We will update more as we know more! Thanks for your thoughts and prayers everyone!Troy, Denise, Libby and Lucas
Sunday, September 19, 2010
The Kiss
Just had to get this picture up tonight! Libby giving Lucas a kiss goodbye and see you tomorrow!!
Sunday Update
Just a quick note here to give everyone an update.
Denise will be released from the hospital on Monday. She was put on prednisone to elevate her platelet level and will be following up with a specialist in a clinic setting.
Lucas continues to improve. He has been removed from the IV and is now nursing and being supplemented with bottle feedings. He has a slight case of jaundice, so they are doing photo light therapy to help his body break it down. They are not sure when he will be discharged, but it will not be Monday. Depending on his billirubin tests and his eating, it should be this week sometime. He is able to now come out of the nursery and visit us for 15-30 minutes at a time for feedings, so that is a plus. It allowed both sets of grandparents to see him up close last night, as did big sister Libby.
Once Denise is released, she will be able to become a "boarder". What this does is allow us to rent a room at the hospital to store our things, sleep at if we wish, and just stay close to Lucas. She will get meal service and use of the "facilities", but no nursing care.
So that is it for now. More to come later!
Troy, Denise, Libby and Lucas
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