We had an interesting visit with the doctor at MD Anderson last week. We thought that we would be getting some sort of time table for Rachel's treatment to continue but instead we got the same that we've gotten for the past 15 months- nobody knows what to do with her!! The oncologists here and there have differing opinions about how much chemo she should get and when she should be radiated.
In Houston they feel like Rach is doing unbelieveably well and they're not in a hurry to try and radiate or change anything in her treatment. The doc recommended keeping her on the same chemo and risking her getting too much chemo because it gives her brain time to develop. The oncologist here wants to radiate sooner than October when she'll be 3 because she's not comfortable giving more than the recommended dose of chemo and she's afraid Rach could go downhill fast. The problem is that one of the drugs that she takes is so new in children that they don't know how much is too much. Getting too much chemo can damage your blood cells and cause leukemia later in life. We won't know if she's had too much until then. It's a risk but radiating her brain now and not allowing more time for development is also a risk. Either way she's going to have side effects and we have to decide which ones we're more comfortable with. :(
She's completely stumped the doctors because neither of them have seen a child with this type of aggressive cancer do so well for this long. They both believe that it's a miracle she's made it this far, we're pretty sure none of her doctors thought she would. We've been hoping and praying that she could make it to 2 1/2 so that she could be radiated on and now the doctors at MD Anderson are hopeful she could make it safely to 3 with the same chemo. Our plan is to do chemo for 2 months at a time and then evaluate what to do next with every MRI. We still don't know when this will be over but we're comforted to know that she has impressed and stunned the doctors with her progress! :)
Friday, March 27, 2009
The Houston Aquarium
While we were in Houston we decided to do some site seeing. We took Marissa along because she was on spring break and she hadn't been to Houston. She was a big help with the girls. Rachel loved the aquarium and she wore all of us out!
They had a white tiger exhibit with a huge glass window into his lair. Rachel was pretty excited to be that close.
They had a play area where kids get wet and we were surprised but Rachel loved it! She got soaked and she kept running back in for more. Michael's sister Becky came to see us when she got off of work and helped chase Rach.
The train was really neat. It went in a tunnel that was under an aquarium full of sharks. We all enjoyed that ride except Emily who slept the whole time!
They had a white tiger exhibit with a huge glass window into his lair. Rachel was pretty excited to be that close.
They had a play area where kids get wet and we were surprised but Rachel loved it! She got soaked and she kept running back in for more. Michael's sister Becky came to see us when she got off of work and helped chase Rach.
The train was really neat. It went in a tunnel that was under an aquarium full of sharks. We all enjoyed that ride except Emily who slept the whole time!
Visiting Mimi
Monday, March 16, 2009
Another MRI
Rachel had another MRI over a week ago. The results are the same as usual- no new growth. :) Because Rachel is doing so well nobody is sure what step to take next. The oncologists have differing opinions so we are going to Houston on the 19th to meet with a team of doctors there. All of them agree on postponing the radiation because there is no need to rush it but nobody can agree on what to do in the meantime. I think that she's going to get some more chemo. :( The chemo that she's on is recommended for 10 doses, which she's had, but can be given safely for up to 14 . That buys us 4 more months with something we know works. We'll see what they say in Houston. We're thrilled and the doctors are too that she's doing so well but that actually is making her harder to treat because nobody wants to rush curing her because it doesn't seem to bother her to live with cancer. I'll post an update after this week's visit.
Emily's baptism
We had Emily baptized on Saturday. Everyone was able to come from both sides of the family. Travis and Robyn came from Mississippi just so they could be the godparents, and Becky and her boyfriend, Sony, traveled in for the event too- thanks ya'll! The kids had a great time but I'm not sure how much the rest of us got out of it because they took turns entertaining us!
Picture with Michael's family
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