Muriel - A year later

Muriel is cancer-free. She finished her last chemo treatment on October 16, 2009. Amidst the H1N1 epidemic, Muriel went back to school November 2nd, 2009. She was really tired but the school administrators, teachers and school nurse have been very supportive and incredibly helpful with transportation (wheelchair between far apart classes).

Muriel was diagnosed Dec. 8th last year (well that is when we found out she had a tumor). December 18th she had a biopsy that revealed that is was Osteosarcoma (bone cancer). I cried all through the holiday last year knowing that was very possibly Muriel's last Chrismas. Ron didn't feel like decorating but I would just start crying, "this could be her last, we have to decorate". It almost seems silly now - what was I so worried about? Well I will tell you that this year I watched from my email lists at least 8 kids across the U.S. die of Osteosarcoma, and a girl named Megan McNeal that Muriel became close to at Hopkins that had Ewings Sarcoma (similar to Osteosarcoma) die. Now a year later, I am very thankful that Muriel is still here but mourning the loss of others. Muriel isn't out of the woods yet, she still has to have scans every 3 months to make sure she doesn't relapse.

No More Fevers

Muriel kept having fevers after her limb sparing surgery in April. Recently, Dr. Weber had to do a manipulation of Muriel's leg so it would bend. While Dr. Weber was manipulating her knee, she discovered that she has an infection inside her leg near her prostetic tibia. So the doctors cleaned it out and she hasn't had a fever ever since! This is a great thing! Just 6 more weeks of chemo and we hope to say goodbye to cancer forever!~ No guarantees, but we hope and pray to never have to look back.

Another Fever

Muriel is in the hospital for another unexplained fever. She has chills, and a fever and is just miserable. She is on several antibiotics, and has lots of test done but they still don't know why she has a fever. She is schedules to have manipulation surgery on Tuesday still. Chemo is suppose to be Wednesday but they will probably delay it now because of her being sick. So frustrating!

Muriel and these darn fevers

Muriel has a fever again. She has been in the hospital for 2 weeks now because of fevers. We thought she was all done so she had chemotherapy this week and just when it was time to get out of the hospital...bamm...another fever. When ever you get a fever the hospital requires chemo patients to stay 48 more hours. This wouldn't be so bad but we are going to Ocean City Sunday. So at this moment, she can get out at 3pm on Sunday. We are suppose to check-in at 5:30. Ugh!!!

Tues, July 14th, 2009 Another Surgery for Muriel

Muriel now has to have surgery to put in a pic line in her arm. It will be a double lumen pic so she won't have to get stuck with needles anymore. I hate that she has had so many surgeries, I have lost count how many...6-7? No one should have to go through all this, especially a child. Though someone asked me how could Muriel, only 12, stand going through all these surgeries and chemos (and a lot of decisions have to be made daily too). Out of my mouth came an answer that when I thought about it, was the raw truth - only a child could handle all of it, if it was you or me we would be dead by now. She has at least 3 more surgeries yet after this one.

Muriel is feeling better but we are still at the hospital

Muriel's fever broke almost 48 hours ago so I thought we could go home but the doctors are waiting on blood cultures to make sure she no longer has an infection. Blood cultures take 48 hours to come back so we are still here...waiting....and waiting... We haven't even seen a doctor in 48 hrs which is weird. Lots of nurses but no doctor to see Muriel. I wish they had windows that opened in the hospital, it would make it more enjoyable. And depending on what room you are in, you might have a beautiful view of the Johns Hopkins Dome or on the other side a brick wall is all you get to look at. We weren't here for 4th of July but I bet we could have seen the fireworks. From the 8th floor (Oncology floor) you can see the water of the Baltimore Harbor. But just a little of it.

My mother bought our family a RV. It is old but it runs (we think). It is a 34ft. 1988 Fleetwood Bounder. I was really irritated that it was so old but now I am actually getting excited about it. Muriel made a list of the places she wants to go in the RV with her family. There are 7 of us (8 including my mom) so we needed a big vehicle to travel in. We have rented RV's in the past so we knew what we really enjoyed using an RV. It is so much more comfortable for the kids. They can sleep, play games, eat, use the bathroom while still moving on to our destination. There is even a queen size bed in the back for sleeping especially good when we drive through the night. So lookout! Here we come!

Muriel had surgery

Muriel has surgery last night at Johns Hopkins Hospital to remove her double lumen hickman (central IV line) from her chest. It was infected. She has had a fever of 104 for several days which isn't good when you are immune compromised from all the chemotherapy that she gets weekly. Since she no longer has a line to draw blood or give antibiotics through, she has to be sticked every time the doctors need labwork. So all night nurses kept coming in to take blood cultures, then another would come in and take regular blood work (flipping the bright lights on each time). So neither of us got much sleep till the late morning (9am)but by then the rest of the world was awake and calling to see how Muriel was doing. So this morning she still has a fever (I was hoping that would have gone away by now). The doctors are making their rounds and will be in to see us soon. Maybe I will know more today.

On a side note, I just had the worst professor at college. I have been going to college off and on (inbetween 5 babies and 2 Iraq deployments of my husband) for over 20 years. I have always found the professors enlighting, and most have the magical ability to make a boring subject interesting - well that is what I thought till I had Dr. K. Presnell. Anyway if you are going to college, before you sign up for classes, go to ratemyprofessors.com. I was surprised when I went there and looked up my professor and found that I wasn't alone in my thoughts, as a matter of fact, I am right on target (her average score was 1.6 out of 5). I will never take a class again unless I look up the professor first there.