A somehow peaceful limbo

We have no results yet from yesterdays tests. The doc sounded gloomy, and discussed quantity of life versus quality of life. My personal philosophy is to try and try (for a cure). If a new drug extends Paige's life some, with minimum discomfort, and gives them good data to use for future AML children, then I am all for it.

I was craving a weekend of quiet and solitude, so Ronda and super-grandma wisked my kids off for their second Maine weekend in a row. And it has been really peaceful here.

Melissa, Paige's god-mother, came with her mom on Thursday to hang out, and Melissa took almost 300 pictures. I kid you not. Some were so beautiful they made me cry.

The Rollercoaster Continues...

Yesterday one of Paige's docs called us to say that the gene mutation that has been present before in her marrow isn't there, according to last Friday's test results. (Hey Sarah, if you can explain the cytogenetic thing in a couple sentences, please do. It's kind of confusing to me.)

The implication being, as I understand it, that perhaps some of the cancer cells seen in last weeks biopsies may not have been cancer. So on Friday they are redoing both tests, and giving her a different kind of intrathecal chemo than she has gotten in the past. And based on the results, we will put together a treatment plan. Dare I hope?

One note - if you are writing a comment, could you please say who you are? Thanks.

Weekend

On Friday we met with Paige's second oncologist. Even while she acknowledged that Paige had virtually no chance of long term servival, her attitude was sooo different from the other oncologist's. She spoke of a couple drugs that might be worth a shot.

Being offered even a tiny baby sized flicker of hope, and a plan that wasn't just palliative (which means, being treated for comfort, while you wait to die) made me feel so much better. It was just a slight attitude shift from the other doctor, but it made a huge difference in lifting my spirits. We have no promise that the new, less-tested drugs will work at all, but it feels great to have options still left.

Pre-grieving hurts so much. I know we are fortunate to be able to have the chance to say goodbye, which some parents don't get. But to grieve while she still lives seems so strange.

We had an amazing time in Maine at my sister's house this weekend. The kids got to play with Tim and Carrie's kids (Ben and Tim have been friends since, I don't know, maybe junior high) and go to the ocean, and Luke got to sleep in a tent one night. And they went to fireworks, and they played at the playground, and jumped on the trampoline, and went to eat at the Mexican restaurant where my niece Shannon works.

On Sunday morning we went to the Vineyard, Ronda and Dave's church, and Luke and Paige loved the music. Paige loved clapping and cheering after each song. At one point, the music leader was trying to slow down the pace, and get more quiet and contemplative. Paige, missing the subtle cues, in the big moment of silence after a song ended, gave a huge, enthusiastic, "Yay!!!!!!" heard by everyone in the big auditorium.

We brought her up for prayer after the service. One person prayed that she would be a woman of God. I amen that. I'm praying that she'll live to be 78.

Then came the highlight of the weekend: Rick and Kathy's house on a lake! A ton of people packed into a motorboat, and some of them went tubing, including Paige on daddy's lap! I wasn't in the boat, but they said Paige loved going fast in the boat when they were pulling another tuber, and that she would laugh and shriek.

The kids had a blast playing in the sand, "building houses." I spent a good part of the day inside, abstract painting with watercolors. It's my latest hobby, and it is amazingly relaxing and theraputic.

So that's what' going on here. I suspect we may be up at the hospital later this week, giving some drug or other a try. I really hope it doesn't make her beautiful hair fall out.

Thank you to all who commented on my last blog. Knowing that people are supporting us is a huge blessing.

Sad News

The doctor told us yesterday afternoon that Paige's cancer has returned to her bloodstream and marrow. So from their point of view, we are at the end of the line. We asked her to look for clinical trials that she might be eligible for, because to sit back and do nothing seems unbearable.

She continued with radiation today and will get it again tomorrow as well. We might do some chemo to extend her life a little and lessen her symptoms, which will increase with time. And I might look into an alternative hospital that does naturopathic treatment. I don't know.

It's fine by me if you all pound on God's door and demand a miracle. We can be Paige's importunate circle of friends. It worked it the Bible, so it's worth a shot.

The four of us are going to Maine for the weekend. Luke is there now with my sister, and is enjoying the extra attention. It's been hard for him with Paige sick, since she gets so much attention, and he's sure to have noticed how much the conversation centers on her. Ben is going to bring his boat, and we might rent kayaks. Also, there is someone in Maine who offered to give Paige a plane ride in his small plane, so we might do that.

If people are thinking, "What can I do for you guys?" here are some thoughts. Here goes:

Here at David's House, where we stay while Paige is an outpatient getting radiation, there is one of those plastic playhouses, maybe 4 feet square, with a window that opens. She LOVES it. If anyone who lives in our area has one we can borrow for a while, that would be awesome.

Any of you who do artistic or portrait photography who want to come and take a few rolls of film for us are welcome. She's really photogenic, and the more photos we take, the better our chances of getting a really great one to enlarge.

Healthy snacks are always a good option. The kids get bored with my selection. That would help with day trips too. We might see if we can go to the aquarium in Boston (unless it's just too darn germy) Hmm. Is there a zoo in New England? The kids would love that. That's all I can think of for now.

Today i'm going to paint Paige's fingernails purple, and go shopping for a barrette for her hair, which is now just long enough to hold one. She had fun playing with a baby here today, and singing her "Itsy bitsy spider."

Ok. Love to you all, and thank you for your support.

Radiation

Paige began getting radiation on her brain yesterday, and will get it each day until Friday. Ben is staying at the guest house (near the hospital) with her, and drives her to the hospital each morning bright and early. They sedate her, and the actual radiation part only takes 15 minutes. So far she has been feeling fine, and hasn't thrown up.

Please pray about the results of the bone marrow biopsy and aspirate. The results determine whether she can go to Boston and get her transplant, or whether the docs send her home and discontinue treatment. The biopsy was scheduled for today, but I'm a little embarrassed to say that I don't know if it actually happened or not. Ben and I talked briefly twice today, and since her having surgery is such a common occasion around here, I forgot to ask!! I do know that she was running around today having fun at the playground, and the store, and that she got ice cream at McDonalds.

Another prayer request: I have gotten horrible sleep for four nights in a row. Having narcolepsy (translate - always sleeping, never rested) I sleep poorly anyway, so this added insomnia is really frustrating. It's been sneaking up on me for a few months now, and it seems like it could hardly get any worse. Please pray that I'll sleep well. I need it. It's affecting my stress level and my ability to cope.

On Sunday I remembered something that happened a number of years ago- one of the only times that I feel like God was speaking specifically to me. I was waking up, and the words were in my mind, "Lay it on your heart, that you can trust God all the days of your life." And I was telling someone yesterday, that when God sent that message to me, He knew about Paige, and the things that this year would contain.

Tuesday

Paige's ANC jumped WAY up to over 1000 all at once, so she was able to come home! We have had a fun couple of days. Luke is treating her with more kindness, which makes me very happy.

Today Ronda took Paige to see the Reed's chickens, and to play on Timmy and Peter's swingset, sans Timmy and Peter, much to their disappointment. I'm still worried about germs, since the hope of transplant is so close. She went to the big town playground the other day, which she hasn't done since October. She was a little tentative, but I think she'll warm up to it with exposure.

One of my favorite activities in the world these days is to sit or lie snuggled up next to her. It's delicious.

Today she was playing the guitar and singing the ABC's when she caught her pic line endcap on one of the guitar strings, which broke it off her pic tubing. So the visiting nurse had to come and remove the entire line. She has to have it replaced during surgery either tomorrow or Friday.

Paige's doc said that last week's MRI looked good, and it sounded like she couldn't see the "sugar coating" of AML cells that the previous MRI showed. So that is progress!

Tomorrow she has another radiation simulation on her brain, intrathecal chemo, a biopsy of spinal fluid, and possibly her pic line replaced. Pray that it goes well, and that the chemo, as my dad prays, "does good and not harm."

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!"