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

the weekend

Paige came home from the hospital (a few days ago) with three kinds of antibiotics to take. They smell dreadful, so I can only imagine how they taste. And they do unhappy things to her poor little tummy.

Luke's birthday was Saturday, so Paige was home for that. Luke asked "Mama if the world is upside down, why don't the people feel upside down?" "Because, well, since there, uh, how about you ask daddy that question."

Paige had great fun on Sunday jumping on the trampoline and going for a long walk with the Hansen clan. At the washed out bridge at the golf course, she found little rocks to throw down into the water. "Hiii yaa!" And then she would cover her mouth with her hand and giggle.

So last night Ben went to flush her line, and behold, there was no end cap. So presumedly the whole thing is no longer sterile, so Ben took her up to the hospital today to get the whole thing pulled out. A relief in one way (now, after 6 months, she'll finally be able to take normal baths!) But not good in that she will have to be poked every week by the visiting nurses when they come to draw blood.

The biopsy is in about two weeks, so keep praying!

update

The doc said Paige will be at the hospital for a couple weeks, until her ANC is high enough to safely send her home.

Today a NYU college soccer team passed us in the hallway on the way to the food court. One stopped and talked to Paige, and asked her which was her favorite stuffed animal from the gift store window which we were standing in front of. "The frog." We chatted a little bit, and then he left, only to return a few minutes later (we had moved on to resting on lobby chairs. Paige was sitting on the arm and pretending it was a horse. "Yee haw!" she kept saying.) He produced a bag from behind his back, and after asking me if it was ok for her to play with dolls, he pulled out and gave Paige --the frog! He said it was a Mexican frog, so we named it Eduardo, after our new Mexican friend.