Jessica is scheduled to have chemo next Tuesday, August 2nd. We will meet with the doctor at 12:30 and then she is scheduled to be admitted after that for an overnight stay where she will receive cytoxin and Doxyrubicin. We are looking at the statistics over the past 5 years of children who were on similar drugs to Jessica. That is about as far as the track record goes, which is why we have even more questions. It isn't a protocol that has years of experience. Two years ago there were changes to the protocol and they are looking more closely at the drugs again. We have decided to omit carboplatin, which is part of the 4 night stay 3 weeks following next weeks treatment. Jessica has had a lot of complications after the last treatment. Besides the infection and so many tranfusions of platelets, her blood pressure is high. We are treating that with meds, but it is always higher than it used to be. We certainly had blood pressure issues at the first until the other kidney/tumor came out in March. But since surgery, up to this point, her BP has been fine. We just need to make sure that her kidney is okay. We have had 2 weeks delay because of her infection and platetlets. Yesterday, they were still only 91, which isn't normal yet, but above 75, so she can have chemo. I have never seen her platelets get hit as hard as they did this time. They have been super slow to return on their own. She had a total of 6 units of platelets in about 8 days. She also dropped to an all time low of 2 before her last transfusion.
Jessica is now able to take meds through her mouth again, her choice, so no feeding tube is necessary. She feels good and looks great, even though her blood pressure is a little high. A fun little announcement is that Jessica's wish from Make-a-wish, which was a playhouse, should be here on August 4th. She is very excited!! As we all are. When Jessica wished for a playhouse, I don't think the playhouse that she got to choose had even crossed her little mind, but it will be something special for our entire family in honor of Jessica and her strength through her cancer journey. Make-a-Wish and our volunteer Jackie have been so great with Jessica and all of the kids. G-Force construction laid the cement foundation in the backyard, and they were also great with the kids and did a wonderful job. It has all been a great experience, something we will all never forget. Lots of fun memories will be made in the playhouse. A great big thank you to so many who make foundations like Make-a-Wish possible!!
I can't believe that school starts on August 15th for our 3 girls. It is hard to see Jessica already 5 and ready for kindergarten, but I can't help but be happy for her because she is so excited to be at school with her big sisters. Caleb will be a little lost without Jessica, but at least he has Jacob :)
Friday, July 29, 2011
Friday, July 15, 2011
Home and doing much better!
Jessica was discharged from the hospital this past Wednesday afternoon. It was a much longer stay than usual and certainly longer than hoped for, but we think we have things under control. Thank goodness for all of the amazing people on the Peds floor at DRMC. They always make our stay as comfortable as possible. We feel very at home when we are at the hospital believe it or not! Jessica's blood cultures did come back positive, both from her central line and her arm. Always one of the things we worry about, but we feel that we caught it early. Jessica is on 2 antibiotics, Fortaz and Vancomycin. The Fortaz will stop once her ANC is .7 or
700. She was .5 yesterday. They will draw her blood again tomorrow and hopefully we can stop the Fortaz. Her Platelets have really taken a hit with this infection. She had to be given 4 units of platelets in less than a week. Her platelets were 10 last Thursday so they gave her a transfusion then. By Sunday they were at 8 so they gave her 2 units (which we have never had 2 at a time before). Monday they were at 80 and by Tuesday they were 40 and on Wednesday they were 15 so they gave her another unit then. She also had another blood transfusion on Wednesday before we left. It has taken a toll on her little body. Antibiotics certainly work for her, but they can sure mix up the system. She feels really good and then suddenly her stomach will hurt. Not only does she have the infection, but I think we are seeing even more of the cumulative effect of chemo. We are so close to the end of treatments, but there is a part of me that just wants treatments to stop now. She truly has done so well, its just hard to see her hit the bottom. So many children struggle with many more complications than Jessica has had, but I just want the treatment to be exactly what she needs, no more, no less. And we will probably never know what that is exactly. Medicine is hard. In many ways more of an art than a science. Very difficult to make the best decision always. I know the answers are there, we just need to be really be prayerful and seek for them in the right places! Her counts are showing signs of return now, but they still may postpone chemo for another week. It might be really nice to have the week to regroup and definitely important for Jessica's little body to make a full recovery!!! Primary Children's will decide on Monday.
700. She was .5 yesterday. They will draw her blood again tomorrow and hopefully we can stop the Fortaz. Her Platelets have really taken a hit with this infection. She had to be given 4 units of platelets in less than a week. Her platelets were 10 last Thursday so they gave her a transfusion then. By Sunday they were at 8 so they gave her 2 units (which we have never had 2 at a time before). Monday they were at 80 and by Tuesday they were 40 and on Wednesday they were 15 so they gave her another unit then. She also had another blood transfusion on Wednesday before we left. It has taken a toll on her little body. Antibiotics certainly work for her, but they can sure mix up the system. She feels really good and then suddenly her stomach will hurt. Not only does she have the infection, but I think we are seeing even more of the cumulative effect of chemo. We are so close to the end of treatments, but there is a part of me that just wants treatments to stop now. She truly has done so well, its just hard to see her hit the bottom. So many children struggle with many more complications than Jessica has had, but I just want the treatment to be exactly what she needs, no more, no less. And we will probably never know what that is exactly. Medicine is hard. In many ways more of an art than a science. Very difficult to make the best decision always. I know the answers are there, we just need to be really be prayerful and seek for them in the right places! Her counts are showing signs of return now, but they still may postpone chemo for another week. It might be really nice to have the week to regroup and definitely important for Jessica's little body to make a full recovery!!! Primary Children's will decide on Monday.
Saturday, July 9, 2011
High fever and no immune system
Jessica and I came early this morning to the hospital. She had low grade fevers off and on through the day yesterday and last night hovered around 101. After talking with Primary Childrens and our Doctor here, we decided to bring her in. Her fever has reached 104, which is very unlike past visits for fever with no immune system. We have given her Tylenol, but that only brings it down for a short period and she still stays around 100.7 then climbs back up. She doesn't feel like eating, but she is resting good, most of the time. I was questioning coming in because every other visit like this has led to the fever quickly subsiding and cultures always coming back negative. We had one positive last visit, but at that point she had her normal immune system back. As always, Jessica is such a good sport. I am glad we came in. It is always scary when children get fevers. It is the normal response of the body, but it always causes stress and worry, especially with no immune system. Cody brought Jessica in this past Thursday evening for a transfusion of platelets. That went just fine. We knew then that her red blood cells or hematocrit was low at 24, but the CBC blood test early this morning showed her hematocrit at 20. They gave her a transfusion this morning. We needed to come in anyway, but wish she didn't have the fever. We will be here for at least 48 hours. This has definitely become routine, but always a worry. We are so close to the finish line and we just hope and pray for no serious complications. Jessica's little body is so strong, just hoping that she will feel better very soon!!
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