Friday's Update

Today's spinal fluid sample showed no cancer cells! The doctor seemed surprised. Tuesday's biopsy also was good, but they weren't sure what that meant, as they only draw a couple mls of fluid, so they were thinking there might still have been some cancer floating around where they didn't sample from. But two good taps in a row is a GREAT thing.

It means that Paige is one big step closer to transplant, which is her only medical chance for a cure. I still don't know the results of today's MRI - I'll find out that tomorrow. So I think they do two more taps, and then a bone marrow aspirate (fluid sample) and biopsy (bone sample). If those are satisfactory, they send her to transplant. I think she might be getting some light radiation to her head before she goes to Boston. Anyway, I gave a "Praise the Lord!" when the doctor told me the good news. If we didn't do anything, Paige's cancer, based on her previous history, would quickly return. So that's que esta pasando.

Please pray for her ANC, which is a number that indicates her immune strength. It's still dropping from the systemic chemo she got weeks ago. In the last three days it has gone from 200, down to 126, down to 50-something. We want it to be at least 500, but normal is far higher than that. They won't do a bone marrow biopsy until her ANC rises considerably.

To those who pray, and cook us meals, and drive me around, and stay with Paige, and babysit Luke, and clean my house, and send us gifts or e-mails or hand-me-downs, THANK YOU. We feel very loved and supported.

Hospital Days...

some progress

Paige's MRI of last week showed that the chloroma tumor thing on the back of her brain has shrunk some. Same perimeter, but less inside. And her spinal cancer levels have dropped significantly. So she gets some more intrathecal chemo, over the next week or so, and the radiation docs are going to examine her Tuesday when she is having one of her "special naps" (as I call them when talking to Paige) to map out what they want to do in terms of radiation. I think she still has another MRI coming up soon. It's all a little jumbled in my brain, but basically, they are taking all the steps they need to prepare her for a bone marrow transplant, which I am guessing could happen within 3 or 4 weeks.

Today we were snuggling on the foldout couch in her hospital room (she had a fever the other day, so she's back in the hospital) all cozy and warm together, and she looked at me and grinned and said, "Cuddly cuddly cuddly!"

Not too bad...

I waited and waited and finally paged the doc myself to get her biopsy results. Her explanation was a little too complex for me, but the bottom line is that the chemo is making some kind of difference in her spinal fluid.

So we will go from there. Blasting away at the cancer, in hopes that we can clear it up long enough to get her to transplant, which the doctor said is her only medical hope for a cure. The terror of transplant that I had has paled in comparison with the thought that she could die really soon. If we didn't treat her, she would have about 2 weeks left. So now transplant, and the isolation and inconvenience of living in Boston for 3 months looks pretty darn good.

My parents have a plastic children's slide on their deck, and Paige spent quite a while today climbing up the ladder, counting to 10, and then sliding down. She also waits at the top and says "....and beyond!"

Tuesday

The MRI of Paige's brain showed a "sugar coating" of AML cells all over the outside of her brain and spinal column. And there is also the AML version of a tumor (chloroma) on the back of her brain. They aren't surprised about that, since Paige's left eye has been not moving very well with the other one, and they suspected something was on the part of her brain that controls vision. She had a vision test today, and there seems to be no vision damage - her current sight limitations seem to be just from the difficulty of focusing properly with one eye doing it's own thing. She can see objects better across the room than she can up close.

The oncologist said that we have two cards left to play. First, triple-dose intrathecal (if you're a medical person, don't laugh at my spelling!) chemo, as in, three chemicals injected into her spinal column next Thursday. Usually they would only do one, but they don't want to dilly dally, and they want to be as agressive as is safely possible in this situation. The second one is radiation, but we haven't quite reached that stage yet. And they would use low doses, and try to be careful to cause as little damage to her brain etc as possible.

The gene testing did come back, and there is leukemia (undetectable by microscope) in her bone marrow. I believe that the chemo they are giving her (besides the spinal kind) is actually an adult dose, something they haven't done at that hospital before. She could get seizures from the chemo, so please pray that she won't!

So we brought her home today, till Thursday, when she has her next spinal column biopsy/chemo. She was delighted to see "Check-us" the kitty, as she calls her.

I really feel peaceful, and I am thankful for all of you who are praying.

biopsy results

The results were not so hot. So she is back at the hospital today for an MRI to see what's up. The cells from her spinal fluid were 98% cancerous. So she is starting a HUGE dose of chemo today to try to get her in remission so that in 4-6 weeks she can go to boston to get a bone marrow transplant. Pray that she won't get an infection, since her white blood cells will be destroyed by the chemo, and pray also that she won't get liver or kidney damage. Those are the biggest risks right now. Any of those could kill her. They couldn't see any cancer in her marrow, but genetic testing results examine that in more detail, and those results take a while to come back.

June 6th

We just dropped Paige off in what's called Pain-Free, the room where they are doing her biopsy. They put her to sleep with a mask, then gave her an IV, so she didn't have to get poked when she was awake. We won't find out the results for a day or two.

She has developed a lazy eye of sorts, so they are going to do a lumbar puncture (biopsy of spinal column fluid, which also circulates up to the brain, and is totally seperate from her other ah, I don't know how to explain this. But you can have stuff going on in your brain/spinal column, and a biopsy of her marrow wouldn't show it. So they are testing both to make sure they catch anything cancerous going on.)

She weighs 28 lbs, which is 8 lbs more than when she was so sick and gaunt. She was so cooperative and cheerful today, holding out her arm to be blood-pressured, and opening her mouth so the doc could look in with a light. And she bounced/danced/walked down the hallways.

In the car on the way here, we were all pretending to be dinosaurs, and Paige said, "I'm a baby dinasaur." in a growl-y voice. It was quite adorable.

So I don't know what the biopsy will show. Thank you all for praying, and for loving us. Your support has been so helpful. kerri