For the time being we will be using this page to post updates on Corrine's stay here at AIDupont battling HLH.
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09/14/06 12:31 PM
Lets see, it has been a long time since an update on the site and for that I apologize to you all. We will just say that no news has been good news. She is now back to her complete normal self, well as normal as a Butz can be. There are a few new pictures on the phot page. The pictures are ones that were taken yesterday. We have alot of ther pictures that need to go up that show the progress of her returning to a normal sized little girl. She is now done with all of her medications and was just cleared this last Monday to return to day care in the next few weeks. She has had a wonderful summer with nothing but positive progress in her fight with this disease. The only issue that she has had since the last update was one visit to the hospital. She caught a virus that caused her to obtain a fever and quite a bit of vommiting and other bodily functions that are not any fun to clean up. She was in the hospital for almost 3 days. The good news is that her immmune system stayed normal through this virus and she did not haveany problems with the immune system stopping after the irus was killed. She has done a lot this summer and we will be putting the pictures up from her ventures this summer within the next week. As we put these pictures up we will tell the stories that go with those pictures. I should get going now as her MomMom and PopPop from SC are in town. The pictures that were posted are the ones that they have taken while they are in town visiting. Look for another update over this weekend. I PROMISE!!!!
06/23/06 12:00 PM
Here is the link to the pictures that Mom Mom put together online for her ClickHere. I have also placed a few new photos of Corrine with her buddy Hercules on the photos page. We are watching Hercules for a few days while our neighbors are out of town. Corrine loves the fact that he is here, me myself well lets just say I'm not fond of dogs. She has been doing wonderful lately. She is finally starting to get her appetite back as we have cut her milk intake to just for breakfast and dinner. As far as her moving around goes, she is now back to normal with walking and running, she is no longer moving around real gingerly. Our next doctors appointment is on next Thursday and hopefully we will get the news that her remaining medications have been stopped. She is only on 3 medications now with one of them only on Monday, Tuesday, and Wednesday. She is starting to fight us now when it comes to giving the meds so I hope that they are done soon. I will get more pictures on the site later today or this weekend as Corrine keeps bugging me to get off the computer.
06/20/06 7:00 AM
First of all I would like to say Happy Birthday to my mother, she has been a major part of the support that we have needed through these tough times.
Corrine has had a great last couple of weeks. She is more and more herself with every day that passes. She is now back to running around at such speeds that she is difficult to catch. If you ask her if she has been sick she will tell you NO!! She had lots of fun over the last weekend. She went with us to a baseball game that was a company picnic for hostmysite.com. The next day she got to go to a farm and visit some farm animals. Of all the animals there she only had interest in one of them, a kitten. She carried the kitten around with her for most of the time she was there. She then went that night with Mom Mom and Pop Pop to another baseball game for Pop Pop's company picnic. For fathers day I had to work most of the day, but corrine got to visit her Nana and Pops. She then went to my sisters house to go swimming and celebrate fathers day with my family. I was able to get there around 5:30 PM and spend the rest of my fathers day with her. She spent about 80% of her time there in aunt Nicole's pool. She loves the water.
Yesterday we went into the hospital for lab work. The doctor came in with the results and asked "Who wants to hear some good news, raise your hand". He then tells us that he wants a hug and hugs Corrine and I. We were told that all of her blood levels are now well within what a normal persons blood levels should be. He said that it almost makes him cry to see Corrine doing so well now. With her levels where they are now she is considered to be in a better state of remission from the disease. Prior to this test she was still borderline remission. We think that some of the levels were still low prior to this as the side affects of any chemo that was still in her. We went out to celbrate Mom Mom's birthday and Corrine's great news last night at a cute Italian restaurant. Corrine actually ate while we were there. She has not eaten but a few bites in the last 2 weeks. We were told that this is normal once a child comes off steroids and it may take up to a month for her appetite to come back. All is well for now. My mother has created a photoshow of Corrine, and I will put the URL to that on the site later as I do not have the URL right now. We will also be posting pictures of her from the weekend at the barn with the kitten.
06/05/06 9:00 PM
Well, today has been an absolutely wonderful day. We went to the hospital and we were told that Corrine is officialy done with her chemo therapy and her medications are all going to be tapered off and ended. She will still need to go in for checkups once a week for the next month, and then she will only have to go in for checkups once a month. She will be able to go back to daycare in about 2 months if everything stays good with her levels. Basically we were told that it will be a waiting game to see if when she catches a virus again that her blood levels stay normal. She is now clear to go back to normal life as far as going out in public, so we will be able to take her out to restaurants again. She is also clear to go to the beach and out on the boat and swim in the rivers again. She may have a normal summer yet. Thats pretty much it for now, we will update later this week to let you all know how her progress is going.
06/01/06 6:45 PM
Lets see, where do we start since my last update. First of all I'm sorry that I have not updated lately but there has not been much news that has happened until now. Since Corrine has come off of the steroids she has started to be the little girl that we all knew from before she got sick. She has her happy personality back and is very active and playful now. Last weekend she asked to take a bath which she has not done since she got sick. Once she was in the bathtub she was sticking her head under the running faucet. Once the faucet was turned off she then lied down and started kicking and moving her arms like she was swimming. She kept yelling "I'm swimming, I'm swimming". That brought tears to Renee and my eyes as it was the first time in months that she has truly shown the little girl that we have known. After this we decided to take her over to Aunt Nicole's to go swimming and hang out with her cousins. She was in the pool and the hot tub for quite a while all day long. She is now laughing and having a great time in everything that she does. She is running again and starting to move around without any issues. She has lost a few pounds and her stomach is not as swollen anymore. This has caused her belly-button to go back to being an innie button instead of an outty. I started back to work on this last Tuesday while Aunt Nicole watched her for the day. My new schedule is Tuesday, Wednesday, Saturday, and Sunday for 10 hour shifts. Different family members are taking off on the weekdays that I work to watch her. It is very nice to be back in the office again. Today I took her to the hospital for what I was expecting to be a standard chemo visit. Once we got there they told us that we were not going to do the chemo and they were going to do an analysis on her progress. They took blood and checked her out and then sent us home with some hope of good news. I got a call today around 4:15 PM and they informed me that all of her levels including killer cell levels look very good with her. They have sent one blood sample out to Cincinatti for a test for the HLH. They believe that they will have those results early tomorrow. We were told to be cautiously optimistic that her levels were showing that we will be stopping her therapy. We will know for sure on this on Monday when we go back to the hospital to meet with her primary doctor for her case. We were told to cut out 2 more medicines including the cyclosporine that has been causing the excess hair growth on her forehead and face. With quitting this the excess hair should all go away. Other medicines were cut back to one dosage a day and it looks like she might be off all of the medicines soon. This of course depends on what we find out on Monday. Right now we are very happy of this news but trying not to get too excited. This is very difficult as all signs do point to her therapy being over. I will update the site again on Monday as soon as we get back from the hospital. For now, thank you all for all the prayers as they seem to be working miracles. Please don't stop, keep up the prayers as we need the good news on Monday.
05/21/06 7:50 PM
Corrine had her visit to the Children's Hospital of Philadelphia last Thursday. We met with the head of the bone marrow transplant department. She said that she has been studying Corrine's case and at this time she does not think that she will need to have a transplant done. We were very relieved to hear her say that. She did say that we are not ruling it out at this point but she thinks that we need to continue Corrine's treatment with the chemo for about another 10 weeks and then stop and see what happens. If the HLH were to start up again then we would be looking at the transplant for sure. She would not get a bone marrow transplant but would get stem cells from umbilical cord blood cells. We were told that they have found what they believe are two good matches from the cord cell bank. They are going to start further testing on these to see how good of a match, but it is not covered by insurance to do these tests. The hospital has a social worker that has started to seek funds for these tests to be performed. We are talking with a few different organizations that help with getting a charity fund setup in her name and will also help us with doing fundraisers for her. We will let everyone know more on these when we get them setup.
On Friday she went in for her chemo treatment. She had a good day at the hospital and does not fuss much at all now when she is there. They are cutting back her steroids over the next week and will have them tapered off completely by next Sunday. We are very excited to get her off this as it is one medication off her long list of medications. There may be a few other medications that she will not need now as they were to help with the side effects of the steroids.
Each day she is getting better and better and is starting to show signs of the little girl that we knew before she was traumatized by all of this. She is becoming much more active and starting to walk more normal as she seemed to take every step very gingerly since she has been out of the hospital. She also is starting to get brave again and do things like going down a sliding board. She is very talkative anymore with lots to say about dogs and cats. She did have a good weekend with lots of family as she went to both grandparents that live in the area and got to see her cousins too.
05/15/06 4:45 PM
Today Corrine went in to the hospital to meet with a blood pressure specialist. It appears that her medications for the high blood pressure and heart rate have started working. The doctor said that she is well in normal range for both of these now. Here is the latest on where we stand in her treatment. The entire treatment time for HLH is anywhere up to 40 weeks for treatment. At this time all of her blood levels are normal but her ferratin levels in her hormones still show traces of the HLH. At this point she will continue the chemo for another 2 weeks at once a week and then go to every 2 weeks for treatment. We will get level checks as we go and that will determine if she needs bone marrow and stem cell transplants. One of her doctors is thinking she will still need this while another one is stating that he does not think we will need to go that route. Either way we are meeting with the bone marrow specialists on Thursday at the Childrens Hospital of Philadelphia. This is to set up the process and start to find a match for her if it is ever needed. We have been blessed so far with good insurance through all of this but found out that the stem cell transplant would not be covered by insurance as it is still considered experimental medicine. This will make it tough for us but there is no way that you could ever put a price on Corrine's life. We will let you know more as we find out.
05/12/06 12:00 PM
Today Corrine went in for her chemo treatment. We finally got the results back from the genetic HLH test. The results came back negative, THANK GOD!!!! She still is not out of the woods yet as her ferratin tests still show traces of the virus. All of her other tests look fine but this one test has the doctors a little concerned. She still has another chemo treatment left next Friday and then we will be monitoring her levels. She still may need to go the route of the bone marrow transplant in a few months if it does not disappear from her system. At this point it is a great sigh of relief for us with hopes that there will be no further treatment left after a few more weeks. It is still going to be some time before she is cleared to go back to her normal life. This is also a great sign that Renee and myself can have more kids in the future without the worry that they will be born with this ugly virus. We thank you all once again for all of your thoughts and prayers as God has been listening to you all. We will continue to update the site with her progress as she continues this fight. I am so proud of little Corrine as she has shown more heart than I think that I would have had if I were in the same situation as her. I am too excited right now to post more to this thread but I will once I get my head together.
05/10/06 8:30 AM
Corrine has had a good week over the last week. She had her chemo on last Friday and did not have any problems with the treatment. She seems to be responding very well to the chemo without it making her very ill. On Saturday she spent the night with her Nana and Pops to let Mommy and Daddy go out to a party with some friends. She had a great time with them and supposedly did not miss us at all. On Sunday we took her to Mom Mom and Pop Pop's house for a cookout and to see her Aunt, Uncle and cousins. She had a good time at their house. She went in for her checkup yesterday and we are slowly getting her high blood pressure under control with the new medications that she is on. The doctor also informed us that we were clear to bring the cats back into population at the house as long as Corrine goes nowhere near the kitty litter. She was very excited to see her cats again and that is all she talks about now is her cats.
We are also at a point that we need to ask for some assistance from anyone that knows the federal court system in Delaware. For those of you familiar with the pregnancy discrimination case that Renee and I have against her ex-employer at the beach - we have served them with the summons for her trial and have received the response from their lawyer. We now need some legal advice on what needs to be done next on this. We do not have a lawyer for this case as all the lawyers we talked to would not take the case because there is not enough money in it for them. We are willing to pay for any legal advice from a lawyer, we just do not need representation as the documentation of the pregnancy discrimination act of 1978 is completely in our favor and her ex-employer was found guilty by the department of labor for this discrimination. If anyone has a lawyer friend that would be willing to give us advice on what needs to be done next so that this case does not get thrown out, it would be greatly appreciated. Please email me at scott@scottbutz.com with any information on a lawyer that can help us in this situation. We would not normally ask for this assistance but our plate has been pretty full lately and this is making things much more difficult on us. Thank you and have a great day!
05/03/06 9:00 AM
Lets see, what has happened lately with Corrine. She had her teachers come visit on 04/27 and seemed to enjoy having them around for the time that they could stay. She gave both of her teachers hugs and let them know that she misses them and all of her classmates. She had her chemo on Friday 04/28/06 and it did not seem to hit her very hard the next day like it normally does. She is starting to show how tough she is when the chemo does not affect her as badly. All of the other kids at the hospital that started chemo around the same time as her are now bald while she still has a good amount of hair. Saturday was a good day for her as well. We spent a lot if time riding in the wagon as this has become her favorite new passtime. Sunday was just as good of a day again with a lot of wagon rides. I am putting some new videos of her in the wagon on the video library page. There are also some new pictures in the photo album pages. Monday was a good day for her with lots of activity. She played all day long and her and Daddy are getting a really close bond with being home together so much. Yesterday she went to the hospital with her Nana to get a checkup on her blood pressure and cyclosporine levels. We have finally found the right balance of cyclosporine to keep that level correct. Her blood pressure is still high but coming down some now. We have to see another doctor soon that is a blood pressure specialist. So far today has been good, she woke up to her usual 3 bowls of cereal and is sitting her reading books.
04/27/06 9:20 AM
Corrine has had a good couple of days. Pop Pop took her to the hospital on Tuesday morning so that she could get her blood pressure and cyclosporine levels checked. Her BP is still high but it looks like we finally got the dosage of cyclosporine correct so that the chemo can take its full affect. She has become very active lately with non-stop playing through the day and into the night. She is still a perfect angel and takes all of her medications without any fights. This morning she was told that her teachers are coming to see her. As soon as she heard this she got very excited and went to find her photo album that was given to her by her school. She started going through the album naming everyone in there. It is obvious that she misses her friends at school. I will get some pictures of Corrine and her teachers and put those on here later. There is now a video library on the site, the ICU alphabet is a very large file that takes about 10 minutes for it to stream on a cable modem. I will try to keep all future videos small like the other video that should load very quickly. Will let you all know how her visit with the teachers goes.
04/23/06 11:00 AM
Corrine has had a good couple of days at home. She had to go to the hospital for some blood tests and blood pressure tests on Friday. All of her levels look good except for her blood pressure. Her blood pressure is high so we now have another medication that she is on. The one drug that we now have to calm the mood swings of the steroids is working well. She has not had any angry fits of rage in quite a while now. Yesterday she was very happy to get a gift from Nana and Mom Mom. She got a new Dora kitchen set. As soon as she saw it she started giggling and had to play with it through the night. Mom Mom and Pop Pop stayed with her for the evening while Mommy and Daddy went out for dinner and some bowling. She had a great time with her grandparents and as usual was a perfect angel for them. We have to go back to the hospital again for more tests on Tuesday morning and then back again for chemo on Friday. Still no results on the genetic tests but it should be soon. I have posted some new pictures of her on the site. You will notice how much weight she has put on. This is from the steroids. they make her face and belly swell as well as making her very hungry. She eats a full meal about every 2 to 3 hours. She is now 26 pounds and was at 20 pounds 2 weeks ago.
04/19/06 8:30 PM
We are home again! We came home today around 3:00. Corrine was very happy to leave the hospital. Once she knew that she was leaving the hospital she had to sit in the wagon with her coat on for the next hour until we were officially released. She came home and seemed to instantly get back to her normal self as far as attitude goes. Her Mom Mom, Pop Pop, Nana and Pops all came over to see her and she seemed to enjoy having their company. We all went for a walk around the block with her in her stroller and she loved that. She has a few more medications on her list now. She is up to 10 different medications a day with about 6 of them being more than once a day. She is doing very well considering that she had her chemo treatment last night. I expect for it to hit her hard sometime overnight tonight. Her sleep schedule is so messed up at this time. She is still up and we are trying to get her to sleep and hope that it is going to last through the night so that we can get some well needed rest. Will post more tomorrow with how she is doing from her latest dose of chemo.
04/18/06 4:10 PM
A correction to the post from earlier. Our doctor has notified us that the hemoglobin level dropping is a side effect of the chemo treatments that she has received and that this is normal to be done while on chemo. All of her other levels are fine which is a sign that she had an infection and HLH did not show up from the infection. She is scheduled for her chemo treatment tonight at 9:00 PM and is due to be released from the hospital tomorrow.
04/18/06 11:30 AM
Well today we awoke to find that her hemoglobin level has dropped a bit since yesterday. It is slowly dropping which means that the HLH seems to be slower than it was at the beginning so the chemo looks like it is starting to help things go in the right direction. She now has to get a blood transfusion to bring her hemoglobin levels back up. If they are back to normal later tonight they may start the chemo treatment tonight at 9:00 and possibly release us tomorrow. This damn roller coaster seems to miss the stop at the gate too often and it is wearing us all down. Don't get me wrong we are still strong through this but we are exhausted. I will let you know more as we find out. I am trying to add an email list on the site above. If I can get it to work properly I can have an email sent to you when we make updates to the site.
04/17/06 8:30 PM
Corrine had a rough day yesterday because of the steroids. We finally found a medication that helps to fight against the moodiness and anger that the steroids give her. Today was a much better day with her in a good mood with no violent mood swings, she seems to be back to herself although she is not very playful. She seems to be depressed about being here. She said that she wants to go home and we told her maybe tomorrow. She then asked for her coat and we asked if she wanted it because she thought that if she was wearing it that it is time to go home. She answered YES to that question. It broke my heart to see her so homesick. The good news is that we are planning on doing the chemo treatment tomorrow and then hopefully going home a few hours after it is finished. We hope this is the case as we all want to be home very desperately. I will post tomorrow as soon as we know when we are going home.
04/15/06 4:00 PM
We are still at the hospital. The clot would not break up after the first day of treatment so we had to endure another day of treatment for that. We just got back from the dye study on the clot and the second day of treatment for it did the trick. The clot is now gone. We are still going to be here for awhile as Corrine has a low grade fever that appears as if it has started to break. The doctor just came in and told us that her levels are starting to show what they like to see and hopefully we will be out of here on Monday or Tuesday. They are still treating her with antibiotics and will continue to do so until some blood cultures are complete. We were informed that her chemo treatment will be delayed now and will probably start back up next week as they cannot give her this within 2 days of being on the antibiotic she is on. I hope you all have a wonderful Easter and please remember to keep her in your prayers at mass and at the family blessing before your Easter meal. I will post again hopefully more frequently than I have this weekend. I have not posted because we were still at the same point with nothing new.
04/13/06 4:30 PM
Corrine went into the hospital today for one of her chemo treatments. We got there and they were not able to draw any blood from her port. They then did a study on the port using some dyes so that they can see what is wrong with it. It has a clot on the end of the line. She is being admitted back into the hospital today for hopefully only overnight while they run a drip through her port with TPA an anti clotting agent. Hopefully this will clear the port and allow them to resume with her blood tests and then administer the chemo treatment that she was supposed to get today. Corrine has also developed a cough at this time and they are watching the cough to make sure that it does not progress into anything further. She also is being looked at for constipation as they want to try to keep her bowels clear to reduce chances for infection. Here we go with nights at the hospital again. Hopefully I will be posting tomorrow that we are all back home and ready for Easter weekend.
04/10/06 5:30 PM
Corrine has had a good couple of days now. Yesterday she was back to being alert, talkative and playful. She is watching a lot of Dora and Spongebob right now and we are gonna go insane from these shows. We went back to the hospital today to have some blood drawn for checks on her levels and also get an ultrasound of her belly done. The ultrasound showed only a swollen liver, which goes with the steroids that she is being weened off of. All of her blood levels are back into normal ranges now and have become very strong. The doctor is very happy to see this progress from her. We now have to go to the Childrens Hospital of Philadelphia to have testing done on Renee and myself to see if we are matches for bone marrow or stem cells. This is not because she needs it or they think she needs it. This is just precautionary in case she appears to beat this and HLH shows up again in the furture, or if the results for genetic HLH come back positive. They still dont think that they will come back positive. We were told today that the lab that is performing the test has told them that it may be up to 2 months from when the samples were sent in before we could get results. So once again the waiting game drags on! We are still very overwhelmed with the prayers and response that we have had from everyone. Your hearts are all so big, please continue the prayers as they are working wonders!
04/08/06 7:45 PM
Corrine had her chemo yesterday. She was feeling pretty good afterwards and played through the evening. It was still a long day at the hospital as we were there for over 8 hours. Today she is having some real difficulties as the day after chemo is always her toughest. This morning she woke up and said nothing, she just sat and stared at nothing for quite a while. She was not very responsive to anything for most of the day. As it has gotten to the evening she is at least talking again and showing some signs of feeling better. Tomorrow should be a better day for her as typically the second day after chemo is a little better. She is now on a schedule for only one chemo treatment a week. I am putting some new pictures up on the gallery. Will post more tomorrow. I have not had a chance to post in the past 2 days as our internet connection has not been working properly.
04/05/06 5:40 PM
Corrine has had a good day today even though she had chemo yesterday. She has had alot of diarrhea and this has helped for her swollen stomach to go down. She has had a playful day today but is sill very moody. We had the neighbors new puppy come over to visit for an hour with her. She lit up and played with him for quite a while. She did get upset with the puppy for a bit when he kept grabbing pieces of her puzzle. At one point she told him that she does not like him but then went on with playing with him. Her Pops just got here and she is very happy to see him. I will be putting more pictures on the site later today or early tomorrow.
04/04/06 7:15 PM
Yesterday was a great day for Corrine. She was more like herself throughout the day. Later in the night she started to have some problems with pain in her belly from the steroids. which has caused her belly to swell. She is still having some problems with sleeping through the night. Last night it was around midnight that she awoke and wanted to sleep with us. We are trying to break her of this but it is difficult, as it is hard to say no to her with everything she has been through.
Today she had another treatment of chemo. She is tired from this and so are we as it was a long day of more than eight hours at the hospital. At the hospital all of her lab results were good, they say that it looks like the medication is doing its job. While at the hospital she kept asking for her coat and would put it on thinking that if she had it on that it meant that we were getting ready to leave. Thats all for now, will try to get a post later and if not then tomorrow.
04/02/06 6:50 PM
Corrine has had a great day today. She is playing quite a bit more and she always seems to have a better day two days after her chemo treatment. Her stomach is still very large from the steroids that she is on. We have found that while in the hospital she has outgrown the clothes that she was in. Mostly the legs on all of her pants are too short now. Her onesies also are too small to get aroud her belly. It is time for us to break out the next size clothes that we have for her. Mom Mom also pointed out to us that her fingers have gotten very long. We were told that the steroids could also cause her to grow, which she could use a growth spurt. She is sleeping most of the way through the nights in her own bed, but tends to wake up around 3:30 AM upset and wanting to come lay with us. Her big cousins came to visit yesterday evening and she loved seeing them and playing with them. She still tends to get a little upset when her grandparents get here because she thinks that they are coming to watch her so mommy and daddy can go out for a bit. We did this at the hospital so we could get meals or come home and get some rest occasionally. Will let you know on her progress as it goes.
04/01/06 11:30 AM
I am still working on getting videos up on the web with this web designing program. You can try this link thankyou
If that does not work you can try opening windows media player on your PC and then hit file->open URL and enter http://www.corrinebutz.com/videos/thankyou.mpg as the URL. You can also right click on either link and click save target as and this will download the mpg to your system.
04/01/06 10:30 AM
No April fools jokes here!! She is home now and really happy. We got home last night around 7:00. She had a great first night at home. She went to sleep in her own bed around 9:00 and woke around 3:30 AM crying. I went in to get her and we went downstairs and slept together on the futon till almost 9:00 AM. She had two waffles for breakfast and took all of her many different types of medication. She is now going through the house playing with all of her toys and her spirits couldn't be any higher. She will not be able to go back to her normal schedule with school and leaving the house until the chemo is complete. Once the therapy is complete we will all be able to return to a normal schedule. We are allowing visitors, but not from anyone that has any signs of a cold or any virus. Visitors will have to leave shoes at the door and sanitize themselves with the sanitizers we have before they can enter. Will get more pics and videos on the site later today or tomorrow.
03/31/06 1:50 PM
Today is a big day for Corrine. Everything went well with the surgery yesterday, and due to this and her incredible will to fight we are going home today. She is going to get another dose of chemo at 2:00 today and then we will be discharged sometime between 5:00 and 6:00 this evening. I have told her that she is going home and she got very excited. Once she is home I will try to get some more pictures of her and post them this weekend as well as a few videos of her. God is listening to everyone that has had her in their prayers. She will be coming back to the hospital every Tuesday and Friday for now to continue the chemo treatment. This will all be done as an outpatient. I will be posting more once we get home tonight. Thank you all and please continue to pray for her.
03/30/06 4:35 PM
Corrine just got out of her surgery. Everything went well with the surgery. She is a bit grouchy right now from the anesthesia. The doctors said that she did great through the surgery and the port should be ready to use by tomorrow once the swelling goes down. We have our fingers crossed on coming home tomorrow after her chemo treatment. I will keep you all posted on this as we find out more.
03/30/06 10:15 AM
Corrine awoke this morning wanting to eat but is not allowed until the surgery. This has made her a bit fussy. She had a visitor this morning, Miss Pat, from the daycare. Miss Pat brought in a photo book for Corrine that had pictures of all her teachers and friends from school. She lit up as she flipped through the pages naming everyone she saw. It looks like we might finally have a book that will give us a break from the Dora book in all the pictures. I will let you all know how the surgery went once she is out from the procedure.
03/29/06 6:00 PM
Today we found out that she is scheduled for surgery for the port tomorrow at noon. She will have to be put under for this procedure. Once this is done it will help us to go home very soon. They have changed her chemo schedule to Tuesdays and Fridays. If all goes well with the surgery tomorrow and chemo Friday we will be going home on Friday. She will then come back on the chemo days for outpatient chemo. Will let you know more later.
03/29/06 8:45 AM
Corrine had a good day yesterday. Still no results on the genetic test. The doctor said that this takes time becuase it has to go to a PHD in DNA. At this point no news should be taken as good news as we would have been informed by now if any part of the DNA strand tested positive for genetic HLH. The waiting game is still pure torture though. She had her second dose of chemo and her body seems to be reacting well to it. The doctors are very pleased with her progress so far on chemo. She did not play as much yesterday as she is confined to the bed for some time while the chemo is administered. The nurses are very happy with Corrine's cooperation when they give her meds and check her vitals. She now will stick her arm out for the blood pressure test when they come in. She also opens her mouth for her medications that she takes by mouth. She does however need to be holding her milk to chase each dose of medicine with a healthy drink of milk.
This morning she is a bit on the grouchy side. Mommy had to leave to go to the house and start cleaning the house in preparation for her return to home. The surgeons will be removing her PICC line tomorow and putting in a port that is under the skin. This will allow her to take baths and showers and feel more normal once at home. We may be going home on Friday but I think it is more likely to be Monday. She will have to return every week for out patient chemotherapy for the next 8 weeks. Her appetite has come back as she is now eating full meals at each sitting and snacking through the day. At this pace with food and drink she may be off the IV by the end of today. I was a bit lazy yesterday with not posting to here but did get a flurry of phone calls wanting updates due to the lack of post. I will let you know more as the day goes on. We love you all and thank you all for your continued support through this trying time.
03/27/06 4:00 PM
First thing to a answer a question from the guest book. There are no set visiting hours in the wing she is in. People are allowed to come and go at any time.
Still no news on the genetic test, this waiting game is killing us. The doctor did come in to talk to us about changing her PICC line to a port that will be under the skin. This would make it so that she can take a bath or shower or even swim with no problems to her line. We were also told that her levels all look so good considering the treatment she is going through. With the levels staying stable we may be able to take Corrine home late this week or early next week. We will need to get the house thoroughly cleaned first to make the house a disease free environment. If she were sent home she would have to come back to the hospital frequently to have outpatient chemo.
She went downstairs today with no IV to the gymnasium to see a basketball game between Rocky Bluewinkle(Blue Rocks mascot) and Hip Hop(76ers mascot). She enjoyed the game very much and loved the freedom of no IV. That is all the news for now. Hopefully we will get results soon and have the comfort of our own home.
03/26/06 12:30 PM
Corrine is doing well from the treatment so far. She will be receiving another dose of chemo today. She had MomMom and PopPop stay with her last night and it seems like she did not miss us at all. The only side effect that she has had so far is a loss of appetite which she did not have much to begin with. It appears that they will be keeping her on the IV as she just does not eat enough. Her spirits are high and she still wants to play constantly. She has had a few guests and seems to light up when people walk in the room. She now has a DVD player in the room (thanks to PopPop) and is all about the Disney movies. We have obtained temporary relief from the Dora borrage that she has put us all through.
03/25/06 12:00 PM
Chemotherapy was started about an hour ago. So far no signs of bad reactions to the chemo. We were told that it would be very anticlimatic when this has begun, which appears to be correct. Mom and Dad went home last night to get some rest while Nana and Pops stayed with her for the night. She had fun with them and had them up at 5:00 AM to go play. She is getting her appetite back as we finally got some beefaroni and raviolis for her. Those are her favorites so she ate a whole bowl as soon as it was put in front of her. Her spirits are still very high and she tells you that she is gonna beat this thing. I apologize for not having many new posts as of lately, but there has not been much in the way of new news. We will still update whenever we get any news. Once again if anyone has questions please don't hesitate to post to the guest book and I will answer them. Your posts will not show on the page until I review them and submit them.
03/24/06 3:30 PM
Two of the three results that we have been waiting on have come in. The two tests that did come in returned a positive for HLH as we expected this whole time. This just means that the doctors have been correct with their analysis of her case. The one test that we are still waiting on is the test for the genetic form of HLH. At this point the chemotherapy will be started tomorrow morning. Please pray that the final test we are awaiting comes back negative. If that does come back positive we will then be moving forward with chemo and stem cell and bone marrow transplants. Even if this last test comes back negative there is a chance that she will still need to go the transplant route if the disease shows any signs of resurfacing. That is all the news we have for now, Will let you know how her body reacts to the chemo.
03/24/06 1:50 PM
Uncle Billy has been here visiting and she has had a great time with him. She was racing him around the halls in a baby cart race. Everytime that he would try to pass her in the halls she would cut him off into the wall. She is a true racer in spirit. Still no news but some pictures of her and uncle Billy were added.
03/24/06 12:55 PM
Still no news on the test results. The doctor came in and let us know that we will hear from him as soon as he gets the email on the results. He is very encouraged at the good spirits that she is in and being very playful. Her platelettes are now at 258,000 so the doctor is very pleased with this. Will post as soon as I get further news.
03/23/06 9:30 PM
Corrine has had a long day of playing today. She must have done 50 laps today with the baby doll stroller. She was a bit moody from such a hard day of playing. No new news now, but some adorable pictures.
03/23/06 2:45 PM
Today has been a good day for Corrine. She woke up to pancakes and ate one whole pancake plus a bunch of goldfish crackers. She is more playful today as well. She has been to the play room and colored a picture. She found a doll baby stroller in the toy room and pushed her new baby around the oncology wing for 20 minutes. She also got to leave the oncology wing to see Elmo, he was here for the kids today to have an Elmo book read to them while he acted it out. She enjoyed it but did not want a picture with Elmo. The doctor still does not have any further results on the genetic tests. All of her blood levels are now in the normal range so the steroids are getting her nice and strong. I will post as soon as we get the test results.
03/22/06 7:45 PM
Corrine's platelette levels have climbed to 158,000. She is back in normal range for platelettes. She has been a bit grumpy today but still active and playing. I have uploaded a few new pictures to the photos page, there will be more soon. As for now there is not any other additional news. Keep coming back. The number of hits to this site is amazing.
03/22/06 12:55 PM
Dr. Powell has come to visit us with some good news. One of the four tests for genetic HLH has come back negative. We should get the results of the other three tests tomorrow. The doctor is now thinking that it is not genetic HLH but a viral HLH that is caused by EBV (mono). There is a team of about 10 doctors here that all feel very strongly about this. With that being said we are told that she will still need chemo but more than likely not as agressive of treatment as if it were genetic. They will want to kill this virus with chemo to cure her of it and not just send her into remission with it. It still looks like we are in for a long haul on this but every day has more promise. God is answering our prayers and the prayers that all of you have been sending to him. She has a new baby doll that was brought from the wonderful people at her daycare. As soon as she woke from her nap she noticed the baby sitting in a basket and immediately said "BABY" in an excited high pitched voice. She has that baby in a bear hug and is mothering it with a bottle. Once again we encourage visitors. If you come to AI, the easiest way to get to our room is to come through the emergency room and then make a left after the vending machines. Follow that hallway for a bit and look for signs for the north elevators. Go to the third floor and go to the right. The BBMT unit is immediately on your left. You will have to come in and wash your hands before you go through the second set of doors. She is in room 3003. God Bless and keep coming back to the site!
03/22/06 12:10 PM
Corrine had a good first night in oncology. She slept in a bed by herself for the first time since we have been here. She slept through the entire night and awoke saying she wants to eat. She was a little bit fussy but was able to eat about 2/3 of a pancake. She then wanted to go play with the kitchen set in the play room. She played for about a half hour and then had us read some books to her. She is taking a good nap now and will be getting a bath once she is up. Her levels have gone up again. Her platelettes are now up to 115,000 still without any transfusions. At this rate of increase she may be to normal levels by tomorrow. We are still waiting to hear from the doctor today. He thinks that the results may come in from the lab today. I am trying to get access to a computer that I can post some more recent pictures to the site. Hopefully at one point today I will get some of her from the hospital - stay posted.
03/21/06 8:30 PM
Corrine has left ICU and is now in the oncology wing of the hospital. She has a nice room with a big TV that has a VCR and a playstation so that she can watch DVDs. When they took us for a tour of the area she was overwhelmed by the recreation area that they have setup for the kids. She saw a play kitchen set and lit up like 4th of July fireworks. She instantly had to play with the kitchen set. She had some trouble at first with her balance as she has not been on her feet for over a week. Once she recovered her balance she played for quite a while. We are so appreciative of all the staff in ICU and everything that they did to help get her to the point she is at now. The staff in the oncology wing seems to be wonderful. They are very warm and loving and have already made Corrine smile a few times. She is now in a normal bed rather than a crib that looks like a cage. She should not have any problems sleeping in this new bed as it is more like her bed at home. Mom and dad should also be more comfortable now as we have a couch that pulls out into a bed. Her platelette levels have increased today from 66,000 this morning to 89,000 at this time. At this rate she should be back to normal levels by the end of the week. It is still up in the air as to whether or not chemo will have to be used. Once again we thank you all, it is amazing to see the amount of visitors that this site has had and the number of posts in the guestbook was totally unexpected. Will let you all know more in the morning as we find things out. Our cell phones do work in this new room so if you want to call, go ahead. This wing is encouraging us to have lots of visitors so we look forward to seeing the faces of those that can make it here, those that cannot - we totally understand.
03/21/06 5:55 PM
Corrine has gone through the procedure for the PICC installation. She had to be administered 3 different sedatives as she would not go under from the sedatives. Once they kicked in it took about 10 minutes for them to finish the procedure, which is good that they were able to finish so quickly as she woke right as they were done. She came back to the room and immediately ate some cheetos, a quarter container of yogurt and a tastykake. She is in great spirits and has had the central IV removed so she can be more mobile now. She is going to be moved to the oncology department after she has had a chance to recover from the sedatives. She has a new Dora the explorer doll that she dances when it plays its music. Thats all for now will be posting again later. By the way thank you all so much for the posts to the guest book. Don't worry if your post does not show up immediately as I have to review them before they show on the site. We love you all!!!
03/21/06 12:25 PM
Corrine will have her PICC line procedure done today at 2:00 PM. They are talking about the possiblility of starting the chemotherapy soon. They may still wait for the definite results on the HLH test. At this time she is up and playing. Her eyes are wide open and she is in great spirits. She is very upset at this time because all that she wants to do is eat, however she is not allowed any food until this procedure is complete. She is now very talkative and playing constantly. It looks like her body has finally recovered from mono. I have had questions on the guest book about her having visitors. We encourage visitors as she lights up when she sees familiar faces. The minimum age for visitors is supposed to be 12, but we can get younger kids in to see her as well. We will let you know more as we get the information.
03/20/06 9:00 PM
We have now added a guest book for any of you to post messages or questions. We will try to respond to any questions that you have.
03/20/06 8:15 PM
Corrine will be receiving the PICC IV line in her arm tomorrow morning at 11:00 AM. After this is complete she will be moved to the Oncology Department where we will have a much more comfortable room for her and the family. We do welcome any visitors as they are always great to help keep spirits up. Will let you know more as we get the news.
03/20/06 12:40 PM
Doctor Powell just came in to let us know on Corrine's current status. At this time everything is remaining stable for her with all of the blood tests but not climbing. They will be removing the central IV from her groin and then placing another central IV in her arm. This will make it less painful for Corrine to have the IV port. After this is done it looks like she will be moved from ICU to Oncolgy to be closer to DR. Powell. He wants to do this as it is easier for him to continue to monitor her from there. This does not mean that chemotherapy will be started on her, but it is still not out of the question. If chemo is started she will be here for at least another 8 weeks before she can go home. We all hope that this will be avoided and she will come home much sooner. They will be giving her more transfusions of blood, plasma, and platelettes to help the levels return to normal now that she has stabilized. We will let you know as we find out more.
03/19/06 10:30 PM
Corrine is now blowing kisses to her nurses. She is sitting up and is playing with her magnadoodle while having lots of fun with Mommy.
3/19/06 8:30 PM
More Good News!!!!
Corrine's levels continue to go up with each blood test. She is now very alert and talkative. She has eaten a few cookies and is drinking milk. This has not happened in quite awhile so it is great to see that she is getting her appetite back. Nurse Debbie left for the day and will not be back until Tuesday. She has been the most wonderful nurse that any patient could ever ask for. The love and caring that she has given Corrine is like Corrine is her own granddaughter. Nurse Debbie told us as she was leaving that she does not expect to come back in on Tuesday and find Corrine in ICU. WOO HOO! I will keep you all posted through here as I am finding out that many people are already visiting this site regularly. We love you all!
03/19/06 5:20 PM
She has been diagnosed with a disease called HLH . This disease is a very rare disease that causes her immune system to be overactive. She initially was brought into the hospital on Monday 3/13/06 for a fever of 105.4 and was rushed to Union Hospital in Elkton, MD. After being in the emergency room all day her fever dropped and they released her to go home to try to get her to relax and eat and drink. She was able to drink and eat some, but it was not much at all. The next morning, 03/14/06, she awoke vomiting and had a fever of 104.7. We then rushed her to our primary care physician and he had us take her to the AI DuPont Hospital. She was in the emergency room all day and admitted into the hospital that night with the idea that she had a form of hepatitis. Due to this daignosis she was placed in isolation.
After she was in the room for a day and tests were run, hepatitis was ruled out as a disease and it was 100% EBV(mono) which was causing her liver to be swollen. Hepatitis means in latin swollen liver. She then had more tests done checking for a rare disease called HLH. This disease is a very dangerous disease that makes her immune system overactive and continues to fight even though the mono is under control in her system. This then caused levels of different things in her blood to drop very low. Once her platelet level dropped to 10,000, normal being 160,000, she was admitted into the intensive care unit. Once in intensive care, they immediately put a central IV in her groin to help with giving multiple IV's at one time and also make it so that they can get blood without having to prick her any further.
The next morning she had two bone marrow tests done and a spinal tap. These were done so that they can test for HLH or other diseases. The preliminary results from these tests showed that she did not have any other diseases and that HLH was not definite but still likely. We are awaiting the biopsies of these tests to be sent to a lab in Cincinatti, OH (which is the only lab in the US that can test for this disease). Things were not looking too good for Corrine at this time as all of her test results on blood were in a constant downward spiral. This continued through 03/18/06. On that day the doctor called a family meeting and informed us that all signs pointed to HLH and he wanted to start treatment for this disease before the results were returned. We agreed to the treatment and strong steroids were administered with the thought of chemotherapy starting the next morning as well as a few other drugs. Today, 03/19/06, we had the doctor come to talk to us at 10:50 AM, chemo was supposed to be started at 11:00 AM, and they informed us that it looks like the steroids were having a positive reaction on her, and therefore they were going to put off the chemo for the time being. We also had a priest come into the hospital to baptize Corrine as this is something that I have wanted to do for awhile but my work schedule kept us from taking the evening classes for it. A few hours passed and then the nurse came in with results from her latest blood tests. The levels that were all so critical before had not only stabilized, they have started to climb. This is the most positive thing that has happened in the course of events here. The family is very relieved at this time, since all signs pointing to the road to recovery has started without any drastic medications. At this time that is where we stand. I will update this page with date and time stamped entries for all that care to keep up on her progress.
We thank you all that have had her in your thoughts and prayers. I am now a firm believer in the power of numbers with prayer.
GOD BLESS YOU ALL!!!!
This page has been changed to put the updates at the top of the page!!