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Aubust 7, 2008 |
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August 7, 2008
Hello Malenafans,
Summer is just moving right along! I guess that’s good because that gets us closer to the end date!
Malena and Tony are finishing up their week at Camp Good Days Jr. They have gone on different adventures with CGD all week. Tomorrow’s adventure is Darien Lake. We are praying for great weather! They are loving every minute of it!
Malena’s counts are doing ok. Her ANC is at 650. They want to keep it between 500-1500. I am always more comfortable when it is toward the higher end but as I tell myself every time I get nervous: the Chemo is doing its job. Ugh!
Malena received her teacher for Kindergarten. We were very happy to see that she will be in Mrs. McAtee’s afternoon Kindergarten. Her friend Julia, who also has leukemia, will be in her class. It is unbelievable that the lightning struck twice here in East Aurora in so short a time span but we are glad to have each other as we travel this road. We were hoping that both girls would be in the same class. The school nurse has already sent a note home telling parents that their kids will be in class with immune suppressed children. So hopefully we will have an uneventful, healthy year!
We had some exciting news! Malena was asked to be the celebrity child for the Variety Club 2009! We will have events that the whole family will be a part of in the months leading up to the telethon and then the weekend of we will help out and be part of the show. A lot of the money raised goes toward Children’s Hospital. The rest of the money goes to other organizations such as Camp Good Days. It sounds like a lot of fun! We’ll keep you posted!
Enjoy the rest of the summer!
Sincerely, Suzanne
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July 12, 2008 |
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July 12, 2008
Happy Kid’s Day!!!!!
It is hard to believe that 2 years has gone by since Malena was diagnosed! I spent some of these past 2 days reliving the first few hours of when we received the news! God it was awful!!! It is still surreal! But here we are 2 years later and making the best of the worst day of our lives!
The kids decided that this year we were spending the day at Darien Lake. We got there when the gates opened and stayed until dinner time. We spent a lot of time on the water rides. It was a beautiful day! When we got home they wanted to have a family movie night so we loaded up on the junk food and rented Evan Almighty which they loved!
This week Malena goes into the hospital for chemo. I am a little nervous because this is the first time since her Mediport removal that she is getting chemo. It will be done through an IV. It should go ok but there is a chance that this chemo could burn her if it does not go into the vein. So we are hoping for the best IV nurse and a steady hand because God knows that Malena will not be steady! She is glad the Mediport is out but she does not like being accessed in her arm.
This has been a wonderful summer so far! All the kids have been having fun! Mackenna and Jamie just got back from overnight camp at Camp Good Days (our favorite organization!) They spent 4 nights at the camp on Keuka Lake and they loved every minute of it! Jamie called every night with updates, Mackenna called once! They can’t wait until next year. We were nervous about sending them but we knew they would love it! They also met other children with siblings with cancer. I think our kids have always dealt with Malena’s illness with amazing courage but it is good for them to meet other kids who are going through the same thing! They know they are not alone.
118 days!
Thank you for checking in!
Love, Suzanne
The guestbook is up and running again! Hurray! Malena loves when she gets "new mail!"
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June 9, 2008 |
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June 12, 2008
Hello,
I am happy to report that we are home! They released her yesterday with her pic line in place. The pic line allows us to administer her antibiotics at home since her mediport has been removed. We are doing meds 4x's a day and it runs for 1/2 hour so it is not too bad. We should be done next Wednesday and then we go back to Children's on Thursday for more chemo and they will also remove the pic line. Dermatology is still trying to figure out the rash. They have her on a topical steroid cream that will hopefully help.
Overall her hospital stay was not so bad! The doctors and nursing staff were great! It also helped that Malena was having a good time. She really is so much fun to be around. When we arrived at the hospital last week we walked into her room and she exclaimed, "Wow! This is so pretty!" Nothing but the best Malena! It's a 5 star hoSPAtal!
Have a great weekend!
June 9, 2008
Hi,
I am sitting in Malena’s hospital room at Children’s as I write this update. She was admitted last Wednesday with a fever and they discovered a blood infection. At first we thought we would be able to return home after 48 hours with a negative culture but that has not happened. Since her cultures have all been positive it has been determined by her oncologist that the infection is “stuck” to her mediport and that it needs to be removed. Malena has been added to the surgery list for today. They could come in 5 minutes to take her or 5 hours. Meanwhile she has to fast until after surgery. UGH!!!!
After the mediport is removed she has to have antibiotics administered through an IV until her cultures come back negative for 48 hours. Then they will insert a pic line in her arm so that we can finish the meds at home. But the fun doesn’t stop there.... Her oncologist is going to do a spinal tap to make sure the spinal meningitis has not come back. The bacteria that they found in her blood are the same as the bacteria they found in her when she did have spinal meningitis back in august, 2006.
I can’t even guess as to when she will be released. I am hoping for Thursday but I am not counting on it.
To look at her and be with her you would never know that she is sick. She is taking all this in stride. She is excited to have her mediport removed. I should mention that the doctors don’t think it is necessary to have a new mediport put in because she is only 5 months from the end of treatment. She will receive her chemo and blood draws through her veins. If all goes smoothly I think that is about 15-20 more “pokes.”
Thanks for thinking of her!
Love, Suzanne
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