A Sunny Wednesday

A few thoughts. One, there have been few people who have asked my mom if she thought I would mind getting an email from them. I don't mind at all. I haven't had what it takes to post many of my thoughts, or to reply to most of the emails I have received, but I certaintly do like reading them.

Two. I miss Paige sitting on my lap, and how her silky new hair felt on my chin. And I can't remember what she smells like. I hope I stumble across something in her room that still smells like her.

I have been thinking about donating platelets before Christmas. It's more involved than donating blood, and takes a couple of hours. They take blood out of one arm, spin it in a machine to get the platelets, and send the remaining (still useful) red blood back into the other arm. I'm hoping to have a "Platelet Party" with some of my family, and all go together to keep each other company.

I can get more details later, but lets see how many units of platelets we can donate between now and Paige's birthday, which is March 26. I believe you can donate up to once a week. I know that the need for platelets outweighs the supply.

And finally, if you have a Paige story, or memory or picture, that you want to post, I (and many more people also!) would love to hear/see it. I'm so sad that the pictures and stories of her life are completed, but if we share each other's stories, it brings her back to life for just a moment.

December morning

To everyone who sent us cards, or who contributed to Samaritan's Purse, thank you. And to everyone who prays for us, a huge thank you. Someone wrote to me that every night they and their three year old pray for our family, and it made me cry.

Overall, we are plodding along, our grief an ember that gets fanned, as we see things that remind us of Paige, or find ourselves in a situation that she would enjoy - like today's snowstorm. She was a big fan of throwing snowballs at Grandpa M, and I know that she would want to be outside today.

The service was beautiful, and seeing those who came for us and for Paige was a pretty amazing experience.

When I feel really sad, I remind myself that if I just wait around long enough, I'll see her again. 60 more years, based on my family's blasted genes, and I wonder things like, Did she arrive in heaven a 2 1/2 year old? Will she be little when I see her, or will she be a grown-up? I'm banking on the former. I think her days in heaven are filled with playing, and with welcoming new babies and children, and helping them feel loved and at home. There's no one better for the job.

Hi All,

This is Ben's cousin Nate. There have been a couple requests for Ben and Kerri's address for Samaritan's Purse purposes, so without further ado:

PO Box 138
Peterborough, NH 03468

Directions to the Memorial Service

The church is located in Dublin, NH off Old Marlborough Road.

You can get directions from Google maps, Mapquest or Yahoo maps. The ending address should be entered as 495 Old Marlborough Rd, Dublin NH 03444. Please note that if you are coming from the east, these mapping services will give you directions that include East Lake Road. The bridge has been washed out, so please continue approximately 2.8 miles around the lake (past West Lake Road) to a left turn onto Charcoal Road. Follow Charcoal Road one mile until it dead ends, then take a right onto Old Marlborough Road.

Once you reach Old Marlborough Road, in approximately two tenths of a mile you will see the sign for Fairwood Bible Chapel on your right. Once on the driveway, the church will be ahead of you on the left. Take the left just before it to the parking lot.

Planning Time

Hello all, it's Kerri's sister-in-law Anna, passing on a few details:

Warren Aldrich is coordinating the reception on Saturday after the service. We're specializing in warm cozy foods and things Paige loved. Since so many of you have asked what you can do to help, Warren wants you to know that he'd welcome any food contributions people would enjoy making, specifically:

hot comfort food (casseroles, entrees)
green leafy salads
French or Italian bread

If anyone is interested in contributing something, please contact Warren so he can coordinate and make sure we don't get 50 lasagnas. You can reach him at: warrenaldrich@hotmail.com or 603-562-7731.

If anyone is available to be on the setup or cleanup crews, let Warren know that too.

Childcare will be provided during the service and there will be kids' activities at the reception. If you know you are bringing your children, it would help to have you post that on here, so we know roughly how many to plan for.

As mentioned, in lieu of flowers Ben and Kerri would love donations in Paige's name to Samaritan's Purse. To donate, visit www.samaritanspurse.org and select “gift catalog” for Christmas 07. Then scroll to the bottom of that page and select “gift catalog index.” You will then be able to choose either number 2 (help save the lives of mothers and babies) or number 5 (feed a hungry baby for a week). Either of those gifts, in Paige Hansen's name, would be wonderful. Thank you.

Directions to Fairwood will be posted in the next few days.

Thank you all so much for the support you have shown. Ben and Kerri are hanging in there-- they're back at home in Peterborough, doing a lot of busywork in preparation for this weekend and a lot of resting. They really appreciate all the love, and the great comments you've left on here!

Memorial Service

The memorial service for Paige will be held next Saturday the 17th at 1pm at Fairwood Bible Chapel in Dublin, NH. There will be childcare provided, and we are hoping to have a child-friendly service.

In lieu of flowers, we will be selecting a specific Samaritan's Purse charity to have donations made in Paige's name. (I'll let you know once we have settled on one.) I am going to wear my cowboy boots to the service, and a pretty dress (when Paige saw me in it a few weeks ago, she said, "Mama, you're pretty!") and I hope people will wear their favorite clothes, instead of dark serious ones.

We're doing ok for now, and we really appreciate the outpouring of love and support that have come our way.

Saturday Evening

We lost our precious Paigey this evening at 9:31.

Friday

My little energizer bunny keeps going on. I have had more great cuddles with her, and there are lots of family around to keep her love tank full.



Here are some pics.

Thursday

This is Kerri's sister Ronda writing. Paige enjoyed seeing family and friends all day today. Gazing around at faces, she named her visitors, doled out candy, and snuggled with various ones. She ate half a banana and some fruit snacks and requested bologna and Lucky Charms. Val and I couldn't find bologna in the hospital so we ended up buying a slice of liverwurst as the deli folks told us it was a close enough cousin. She never tasted it but added it to her stash of goodies on the bed. At one point, I suggested that she tell her Daddy that the Red Sox were yucky. No reply from Paige. Ben offered a counter suggestion and Paige immediately and enthusiastically echoed his "Go Red Sox!" Guess we know where her loyalties lie. Tonight Kerri, Ben, Luke, and Paige snuggled together on Paige's bed and the children held hands for a time.

Tuesday

Today Paigey said something that we couldn't understand. After she repeated it a few times, we figured out that she was saying "want better" so I asked her if she wished she felt better, and she said yes. I forget that she must feel awful. Because her knee pain is under control, I don't think as much about general systemic feeling-yuckyness.

She has a couple good hours each day mixed in with all the hours of sleeping/zoning out. I got to hold her for a long time last night sitting in a chair. She held her arms up to me and said, "I wanna get up." which she never says. Three times in the last 2 weeks she has said "Wanna go playroom" but never that she just wanted to be held. I held her, and she promptly went to sleep and slept for an hour straight. I have some real sweet memories of last night and today to hold onto.

Friday

Pics from earlier this week

Paige's pain is under control, but she sleeps almost all the time now. I guess it caught me by surprise that that could happen so soon. Her swollen face looks like that of a much older child. She only talks when she needs to. Like when I try to get up off the bed where I've been cuddling with her, and she'll say "Want Mama sleep nexxa me!"

The Healing Rooms group came yesterday and added a huge mountain of faith. All I know is, I really want to keep my little girl.

Saturday

We increased her calming medication, and decreased her pain medication just a little, to see if it would make her less zonked out. She had a very quiet and peaceful night, and she did interact with us a little bit more in the evening.

Just a quick thought - if you are planning to visit, could you call ahead? It helps with keeping the chaos level down, when we know what we can expect for a given day.

Wednesday pm

I have so many thoughts swirling in my head, it's hard to know where to begin. Paige had a really rough day on Monday, and Monday night had a lot of pain. Tuesday was better. Last night Shannon and Anna spent the night with her, and Anna said that Paige didn't cry out in pain once, (hooray!!) though she did talk a lot in her sleep, and made her "wounded bird" noise (musicians, think a C sliding up to a G) often during the night.

Today was groggy. Paige's face is really swollen, which makes me sad. Her kidney function isn't what it should be, and the pain medication they finally found that makes such a difference with her pain level affects her kidneys. After lunch Paige wanted to go for a stroller ride to the playroom. She looked quite miserable.

Paige and her huge bowl of Halloween candy will not be parted (thanks a lot, Aunt Lulu!) She doesn't eat much, but hands it out, and wants it to be right next to her on the bed.

I have had the little flicker of hope (which a few days ago had almost completely gone out) fanned into a bright little bonfire. A little hard to explain, but why sit around waiting for death, when I can be putting my energy into hope and life? Cancer cells are not more clever than God.

Prayer list:

• my stress level
• Luke; he is acquiring "girlfriends" here left and right (mostly nurses) so that "if one dies, I'll still have one left."
• Paige's kidneys
• for Paige's body to attack the cancer cells - everywhere, but especially in her right knee, and in her CSF (cerebrospinal fluid)
• that she will be well enough to have fun!!!!!!!!!!!!!!!!!!!!!!!!!

Tomorrow at 12:30 a group of people from Newport NH are coming to pray for Paige. They are part of something called "Healing Rooms" a Jesus-centered prayer/healing group. Join in with them at 12:30 if you would like!

Ok. I need to go snuggle with Paige.

Saturday Evening

Paige had a great evening! I left to get dinner, and when I returned, she was eating a pot pie. I think she ate the whole thing. I took a nap a little later, and awoke to Paige making various animal sounds with Uncle Scott. They were roaring like lions, and she was crowing like a rooster. Then she started singing him a song. For a while people just stood around watching to see the funny things she was doing and saying.

I asked if she wanted to go on a walk, and she did, so we went, and our entire group crowded into the playroom where she wanted to sit on my lap at a little table. She colored a picture for Daddy, and when she noticed that everyone but the four of us had left (to give us some space) she said, in a worried voice, "Where friends go? Where people are?" And then she saw that the door was closed, and she started crying. So we invited them all back in, and she proudly held up her drawing for them to admire.


So it was a great evening, and I am thankful. Here are some pics from this week and hospital stay.

Saturday

We are camped out at the hospital, in a nice big room. Paige is still in quite a bit of pain from her right knee. Her pain medication dose keeps being increased, a number of times each day, even, but it still doesn't seem to be enough. Mostly she lies in her bed (on a big air mattress on top of a regular hospital bed) watches movies, and picks who she wants to cuddle with.

Yesterday she amazed us all by declaring that she wanted to go to the play room. I carried her there, and we sat in a chair for 15 minutes, while she clutched her princess lunchbox (which contains all her treasures, and is very heavy- but she refused to be parted from it). Then she wanted to go to the gift store downstairs, so Cote (her cousin) pushed her very heavy IV pole and I pushed Paige in her stroller. While we were in the store, she said she wanted to go home, which made me cry.

Paige also seems to get really anxious sometimes. I think her nerves must be shot from being in pain, and from this new lifestyle of being in the hospital stuck in a bed. It's a relief every time she asserts herself and is more Paige-like - like when some of us were standing around her bed talking, and she was trying to watch "crehbulls" (the Incredibles) and I guess we were bugging her, because she kept calling out, "no talking!"

I am sometimes heartsick, sometimes ok, and sometimes stressed out. Pray that our time here will be sweet for all of us, and painfree for Paige. And please pray that she won't be so anxious.

She gets platelets every 8 hours, and her risk of bleeding right now is actually quite reduced. The cancer on her spinal column could still do bad things quite suddenly. Anemia might be how she eventually leaves us, which I have heard is quite gentle and peaceful.

God, are you sure you don't want to do a miracle after all?

Wednesday

This is Ronda (Kerri's sister) writing from the hospital. Kerri asked me to give an update on Paige. Over the past 48 hours, her bladder has not worked and she has experienced more pain in her legs. She had radiation directed at her spine last night but it did not seem to help the situation and she is now catheterized. She is also now needing a blood transfusion every day. After consultation with her team, Ben and Kerri have decided to keep her at the hospital from now on. Chemotherapy has been discontinued and the emphasis will be on spending time with family and staying comfortable. Paige's doctor said today that it is likely that Paige has less than a week left.

Saturday

A quick prayer request: Paige is experiencing a lot of pain in her right knee. I've increased her pain medication, but walking and being moved is sometimes painful for her.

She's had a pretty good day, and we had a nice time as an extended family going on a "leaf kicking" walk. The kids opened a box from a friend in Maine that was filled with dress up clothes, and Luke had a blast fiercely waving around his new pirate sword.

Paige is going to Dartmouth tomorrow to get platelets. That's all. I don't feel like saying anything else.

Wednesday

Paige has had two good days. We've had lots of family over, and she really brightens up when there are people around, and fun things going on.

Today Paige, Laura H and I went to the hospital for platelets and blood. Paige felt well enough to go into the playroom to paint and play with beads. She's been stuck on the couch watching movies for so long, that it's wonderful having her be more active.

Here are some shots from today's (Wednesday's) infusion.

A sad kind of beautiful autumn day

We're at the hospital now. We came in two nights ago because Paige had a fever. When we finally got here, her fever was gone, but her port was all swollen with blood, and unusable once again. Her blood isn't clotting like it's supposed to, even with the platelets and plasma they keep infusing her with. So the doctor brought in her team and had A Discussion with us about the implications.

Worst case scenario, she could have a head or internal bleed at any time, and be gone today. Or she could get an infection, and since she is so immune-compromised, be gone in a few days. Or neither of those things could happen, and she could last weeks, or, a more remote possibility, months.

So. A few days ago I got mad at God for the first time, and asked him why he needed Paige in heaven. Heaven is already cool enough already, but we down here are the ones who need her. What possibly could benefit from her being there instead of here?

A beautiful answer to my question came yesterday, when I went to the chapel here at the hospital for the Sunday service. I walked in just as the organist was playing the last notes of the closing hymn. So I asked the chaplain what she had talked about, and I had a wonderful and enriching time talking with her, gleaning little bits from her knowledge and insight. She pointed out that Paige came to earth with a purpose from God, and when she has fulfilled her purpose, then it will be her time to go. That made sense to me.

So things to pray about:

• that her body will stop making cancer cells
• that her platelets etc. would clot like they are supposed to
• that her port will be usable
• that she won't have any internal (or any other kind) of bleed
• that God would spare her life, like that guy in the bible who God told was about to die, and then the man asked for more time, and got it (dreadful grammar, I know)
• that if it's Paige's time to die, that her journey would be gentle and peaceful and without pain
• that regardless of whether she lives or dies, her mind, spirit and heart will be peaceful and her psychological/emotional etc. needs will be met
• you can pray for us, her family - but I feel calm, and so very loved by all of our friends and family, and I feel peace that must be coming from God. For these blessings, I am grateful.

We're Home!!

We are home at last, and our house looks AMAZING, thanks to the Shiloh folks, some family members, some NH friends, and probably a few more people I'm not remembering. So to all who painted and scraped and put in floors, and made food, and gave gifts, and donated money for paint and supplies, BLESS YOU!!!!

The trip was good. We were able to extend it by two days, since Paige was visiting a Florida hospital for half of one day, and then all of the next day, getting blood tests, and getting blood products. As for the rest of the week, I'll let the pictures do the talking.

Saturday at our house

Thursday

To my immense relief, the doctors came up with a good pain management system for Paige. That, combined with a break from chemo (her last day for a few weeks was last Friday) has made a huge difference in how she is feeling. Today was the most active and Paigelike Paige has been for weeks!

Make-A-Wish came this morning to talk with us and Paige to get an idea of what she would like for her "wish". We finally agreed on Disneyworld. So we are leaving on Monday! We'll be gone for a week, and Casey, our "nanny" will be going with us.

Other news of note: our wonderful friends at Shiloh Chapel in Maine are sending a large crew down on Saturday to paint, lay hardwood in our living room, and do other misc. projects. Their generosity has been amazing, and I'm looking forward to spending time them on Saturday. Luke will love watching the process and hanging out with builders. He is really into construction and loves to figure out how things work and go together.

When Ben was sent back home from Iraq, the Army sent another soldier to take his place in the field hospital. Unfortunately, it was someone who really did not want to be deployed. (Some guys actually volunteered to go; this guy was not one of them) And he has kids. Anyway, they arrive home from their year in Iraq on Monday, and I want to honor that soldier and his family somehow. I'll be thinking over the next couple days of how I can let them know that I appreciate what he did, and what their family had to give up so that Ben could be home with us.

I bought Paige her own sparkly nail polish and lip gloss the other day. She puts the nail polish in her pocket, and carries it around with her. And she put the polish on her toes all by herself!

I was doing some research the other day, and discovered that decitabine, the chemo she's on, can take up to 3 months to start working. I was not happy to learn this. So please pray that God will speed it up, and make it start working right away! And the oncologists have warned us that they don't even know if this drug will work at all.

God is a scientist, and he knows how to make the cancer cells stop dividing, and the good cells to do their job.

Friday

Paige's cancer is now detectable in her blood under a microscope. 18% of the cells they saw in her blood were "naughty cells" as we say to Luke. For a number of months previously the cancer could be seen only by taking bone marrow aspirates/biopsies, and the few times they saw cancer in her CSF. Yucky news, but not shocking.

I have been wondering how much Luke understood about all that was going on. I had talked about the possibility of Paige dying a number of months ago with him, but didn't know how much he comprehended about her current status. Tonight when I was snuggling with him, I asked if there was anything he was worried about. "You mean like Paigey?" was his answer. Then he said he had good prayer manners, and proceeded to pray, "Dear Father, please give Paigey a good night...and make her all better...and don't make her die." Ok, I thought. He gets it.

I explained to him that if Paige does die, we'll be really sad, and cry, but that we'll still have fun times too, and laugh, and do things like go to the playground. And I told him that we were still asking God to make her all better.

"...being sure of what we hope for..." My hope is that Paige will live to be 78, and a grandmother. Faith is a scary word to me, so for now I think a lot about hope. And I still have hope.

Today Paige had a few good hours while at the hospital getting chemo. It started when I handed her my lip gloss to play with, and she immediately started making adorable faces and being really talkative. She put lots on, and I kept saying, "Ok Paige, that's enough lip gloss." And she would say "Onnnnneeeeee more." And I just couldn't resist. So her lips got nicely moistened today. Then she wanted to go to the playroom, where she sat at the table and did crafts for quite a long time.

Tonight she is fussy and seems to be hurting some (despite the increased dose in painkillers.) I really hope she's feeling better by tomorrow. We are supposed to go to a condo on Lake Winnipasauke for a few days.

Tonight I was lying next to her on the folded-out futon bed. I opened my eyes, and her face was about 5 centimeters from mine. She started shaking her head side to side, and I asked if she was giving me a nose kiss. Yup. It was quite adorable.

Tuesday

Paige is doing ok this week. She has only 3 days left in this cycle of chemo. The medication manages most of her pain. Tomorrow morning she sees the cranio-sacral therapist again. She spends some days lying down, and other days she walks around and plays. Pray that her blood will clot properly, which it currently isn't. It's not an emergency, but it makes her port unusable, since blood has pooled under her skin at the site. So for now she gets more pokes.

Sabbath

Paige has had a rough few days. (We went home on Tuesday.) Thursday night she was awake most of the night in pain. Tylenol and morphine didn't seem to help. She was really restless, and she moved from the futon bed in the living room, to my bed, to her bed, back to my bed, and we finally ended up on the futon, where she wanted to watch movies and look at books. She loves her Noah book, and keeps calling Noah "Jesus".

I called the oncologist at 4am, who said maybe we should come in early to chemo. We would have left the house at 9:30, and instead Paige and my mom left at 7:00 so she could get some pain management before her chemo started. Dad watched Luke for hours, and thanks to my wonderful parents, I was able to catch up on lots of missed sleep.

The oncology people made a handy dandy daily medication schedule that includes 3 or 4 doses of oxycodone, some steroids, pepcid for her tummy, adavan, zofran for nausea, miralax for her digestion and probably some other things I'm not remembering. (Mom has Paige tonight, so the list is with her.) I went over to Mom's tonight to drop off some medication, and Paige was on a mattress in the living room, watching Barney and eating a double cheeseburger.

Her pain at this point is caused by all the cancer cells in her marrow/body. The chemo regimen she's on isn't fast acting, and I sure hope it kicks in soon.

Last night I lit some candles and Luke and I had a Sabbath meeting. I said a prayer and we said what we were thankful for. I don't do this very often, as was evidenced by Luke's enthusiastic, "And now, let's tell ghost stories!" He sat on the coffee table next to the candles, and rattled off 3 or 4 stories like lightening, complete with many gestures and facial expressions. One of them sounded suspiciously like "Beauty and the Beast" which he had just watched that evening for the first time. How the heck does he know what a ghost story is? I just laughed and laughed and told Luke what a great story teller he was.

Prayer list:

1. for Paige not to hurt!
2. for her appetite - she lost weight and muscle during her two week hospital stay
3. for her chemo drug to do it's job, and start killing her cancer cells
4. for our family's peace, and "family-ness" as we are often in three different places at any given time (my amazing niece Casey is in the process of temporarily moving in with us to help out with the kids, so this should really help with having both kids at home more often.)

Feeling Better!

(on safari in Maine this summer)

Paige has had a great 24 hours. She has gone on lots of walks, had two baths, and has been downright giggly. They discontinued the morphine this morning. We have decided to go with a drug called decitabine, which is usually used in elderly AML patients, but heck, we were about out of options.

And she might get to go home tomorrow! She would have to come back once a day for 4 more days, then she would have a couple days off, and then come back for 5 more days of outpatient chemo.

Sunday

Paige had a great night! I am very thankful!!

all snuggly and sleeping

(written yesterday) Paige had a rough night last night, but a much better day today. We have cut dairy out of her diet till her tummy is back to normal. I wish I'd thought of that a few days ago.

Her oncologist talked to Ben today about test results, and options. Today's intrathecal sample came back clear (as they usually do) but her bone marrow biopsy came back showing something like 48% blasts. There are a few different options for how to try to slow her systemic cancer down some. Pray for wisdom in making this decision. We want the best results with the fewest side effects.

I had been tossing around the idea of going to a different hospital, or clinic, but I finally came up with a plan that I feel good about. I began looking for local naturopaths, chiropractors and cranio-sacral massage therapists, to see what they could do to complement what Dartmouth is doing. With this plan, we don’t need to travel far away. I really like what I have found for local resources so far. My chiropractor that we used when we lived in Claremont said he would see Paige, I got some good advice over the phone from a local naturopath, and I found a great cranio-sacral therapist who made a house call to the hospital last night to treat Paige. (I’m really excited about finding her; I think she’s going to be a great resource.)

I have also met some people this week who have encouraged me to have hope. One, another mother of a sick baby, lent me the book "The Secret" and encouraged me to keep believing, and told me that doctors don't know everything. It helped me decide to change my mental posture about Paige. These past two weeks have been really hard, and my mindset has been, "My daughter is dying." Now I am in the process of shifting my thinking to, "My daughter is fighting leukemia."

Something that’s been a huge blessing recently is finally finding a drug that helps me survive narcolepsy. Because I am more awake and can think more clearly on it, I am far better able to take care of Paige when she’s in the hospital. Before I was on it, being at the hospital was so hard for me that I could only stay one day before getting severely stressed out. I am also able to drive longer distances safely, so I don’t need people to drive me to the hospital like I used to.

The other day Paige said “I wanna gun.” So I zipped off to the gift store and bought her a plastic one that shoots discs, and she loves it.

Today (Saturday) Paige is doing quite well. She stood up some in the playroom, and went for a long stroller ride with Shannon and Casey. Her IV line got tugged this morning, so the IV team needs to reinsert it. I think it’s a pretty quick and easy procedure. She slept most of yesterday, and had a good quiet night last night.

Reminder to those posting – please don’t post anonymously – at least use initials!

So here is a prayer list: 1) for Paige’s digestion to be back to normal – we’re almost there, but not quite 2) For the four of us as a family 2) for wisdom in selecting her next chemotherapy

Thank you all for your love, prayers, and gifts. Your support makes it easier for us to survive these crazy circumstances.

Ow ow ow

(I wrote this last night) Paige is still in quite a bit of pain. On a positive note she played connect four in the playroom today for a little while. She also drank more than 8 oz of milk, and ate 2 bites of egg. But this evening she was back to grunting and wincing with pain. I think they are going to give her morphine every 2 hours tonight instead of every 4 to help with the pain.



It's frustrating to me that they are only treating the symptoms now, rather than the root of her pain. But we still need to figure out what the root of her pain is. We have an MRI of her spine and hopefully a CT scan of her belly tomorrow, so we should know more by then what is wrong. She will also have a bone marrow biopsy, aspirate, and intrathecal chemo.



Today I went to the hospital chapel to talk to God, and had a good time telling him stuff that was bothering me. Then I borrowed a hymnal, and went to the nearest employee stairwell (chosen for it's acoustical qualities) and sang hymns for a long time. Then a security guard appeared, and said someone had called him to come see what I was up to. Apparently one of the many docs or nurses who had climbed the stairs while I was there was concerned enough to report me. For what, I don't know. The guard said that he had no problem with me being there, but when he left I cried and cried.



I have spent hours over the last three days doing Internet research, to see if I could find anything that might be causing Paige such pain. I have had a few theories, but the one I found tonight seems to be the best match yet. Neutropenic interocolitis. Even if I'm way off, researching gives me something to focus on, and is a way to make me feel like I am being helpful in some way.

Paige's poor tummy

Paige has been bedridden for days, and today was so sedentary she only moved her head. Her constipation has been cleared up, but now her tummy is still full of air, and is causing her a lot of pain. She has a tube down her nose to help suck out the excess tummy air, but it doesn't seem to be doing much good. She is on two painkillers and one sedative, and isn't eating.

I am not ok with this. And we have to sit around doing nothing until Tuesday, when MRI opens, so we can see if this is being caused by cancer on her spine causing nerve pressure to affect her digestion, etc.

So please pray. I would like her to get relief right away.

We still plan to go to the lake house, once Paige is feeling well.

Thursday

It's Thursday evening, and Paige and I are at the hospital. She has been feverish for days, and has been complaining of tummy and leg pain. To sum up, she is dreadfully constipated, and needs the stuff they give someone before a colonoscopy to clean out her belly. And sadly, this was entirely preventable. Mommy error - I didn't administer her anti-constipation powder on a regular basis. She is zonked out on morphine right now, due to her level of discomfort. I am looking forward to having my silly, rambunctious Paigey back.

The prayer and praise event on Saturday was wonderful. A small group of Paige friends joined a large group of others, for a really nice evening of music, food, prayer, and fireworks. Ben, Luke and I stayed until 10pm. Thank you everyone who joined us either in person, or in spirit! We felt supported, and met some new friends.

A wonderful anonymous donor has given us the gift of a lake house for a week, which we will use starting next Tuesday. I am hoping that we will have a steady stream of close friends and family to keep us company. With Paige's handy dandy new port, swimming will be easy. (no 20 minute wrapping of her arm with plastic bags and tape!)

I enrolled Paige in Kindermusik, which starts next week. It is a weekly program where little tots can play instruments, sing and dance, in a structured but low key environment. Parents come too, and I am really excited to be able to spend that special time with Paige.

Last summer we began the project of painting the exterior of our house and we got about 1/3 of the way done. So I am thinking of having a painting party sometime in September, to finish the rest of the house before winter. If anyone is interested in helping out with scraping, sanding or painting, send me a quick e-mail. (kerri-beth@juno.com)

Please pray for 1) our stress levels 2) that Paige will be well enough to go to our family reunion in Rhode Island on Saturday and 3) for Luke, as he processes the seriousness of Paige's illness, and deals with attention issues. I know that in some ways we have not supported him as well as we could have, and I want to make sure that he is getting what he needs.

Tomorrow's Event

(Luke meeting Paige for the first time)



I've had some trouble tracking down info about the praise event in New Ipswich, or I would have posted this sooner. This is what I have:



- it's at Mascenic High School in New Ipswich


-the BBQ is from 4-5 (other events go on until 10pm)


-the four of us and a few others plan to be there from 4-5 or 6.


Hope to see anyone there who wants to come!



My amazing sister had both of my kids up in Maine again for a few days this week. The timing was great, because this has been one of the hardest weeks I've had since Paige's diagnosis. Don't stop praying for us, because we need it!



Today Paige started oral chemo. Maintenance stuff.

Saturday

1) Paige's leg stiffness seems to have dissipated, thankfully.

2) Next Saturday, the 25th, happens to be a Praisefest celebration in New Ipswich (the next town over from Peterborough.) I'll get more details, but I believe it goes from 4-10, and there will be a puppet show for kids, free food, and fireworks. A bunch of different bands from local churches will be there. I thought that it was a wonderful coincidence that it's the same day as our Praise Day, and I am hoping to attend. So if anyone is interested, you can do your praising in a group setting, and meet Paige, if you haven't already.

3) Please pray specifically that God will help us to find a hospital/naturopathic center etc. that will be helpful for Paige. If there is something else more we can be doing, I want to be doing it. Some of you have written with suggestions, and that has been good in helping me get an idea of some of our options.

4) The wonderful people who work with Ben in the nursery at the hospital got Paige an AMAZING playhouse, with lots of pots and pans and dishes to go with it. So today's shots are of the kids playing in the "little house" out back. They adore it.

Day of Praise...

Saturday, August 25th is the day for Paige that we have scheduled for prayer and praise, for those of you who are interested in participating. I'm not exactly sure how we'll spend the day - maybe the kids and I will dance around our living room to praise music - or I might go someplace quiet and solitary with my guitar.

Paige's central line (port) is scheduled to be placed next Monday. It is a bigger procedure than most of the other ones she has had, as she has to be intubated (have a machine breath for her).

And she has started walking stiffly again, which makes my heart ache. That's what she did last November, before we had a diagnosis. The implication is that there are a lot of cancer cells in her bone marrow. I'm not sure when her next biopsy is, which will tell us for sure.

Tuesday

Yesterday's appointment went quite well. First we went to the pediatric floor to see her "nurse friends" and then down the hall to Pain Free, where they sedated her with a white liquid they put in her Picc. (hah, now, after she is done forever with her Picc, I finally learn how to spell it right.)

Usually she fusses a little, and gets woozy, and conks out within 10 seconds, at which time someone takes her from my arms and lays her on the table where they give her oxygen, and then wisk us out of the room, so they can either do a biopsy, or wheel her down to MRI. This time, she talked and moved around and fought it for like 3 minutes. It was amusing to see her be more determined than the anesthesia.

The doctor spoke to us twice during the day, and I felt like the discussions were very helpful in outlining our options. Basically, Paige's bone marrow is currently in good shape (but given enough time, they think the cancer cells, which are currently at 3% in her marrow, would multiply) in fact, that's the least amount of cancer that has been in her marrow since her diagnosis.

But her brain/spinal fluid area is the problem, and unfortunately, we have already tried radiation there and really agressive drugs, with only limited success. So we talked, and asked lots of questions, and came up with a plan that will hopefully extend Paige's life some, with what we hope are limited side effects from the treatment. We'll give her some intrathecal chemo, spaced out more than before - like once a week or once every other week instead of two times a week, to limit toxicity, and we'll give her systemic chemo (for her marrow/blood) in really low doses orally, to work at reducing the speed at which the cancerous cells there multiply.

So you can focus your prayers on Paige's CSF (cerebro-spinal fluid). Luke wanted a picture of Paige's brain, so they printed out a still from her last MRI, and Luke is fascinated by it, and spent some time yesterday trying to explain the picture to Paige.

I will still research online to see what else we can do, and look for other hospitals/data that might offer us some other options.

The Doctor is guessing that Paige has less than six months. But I am still hoping for a miracle. I am thinking of having a day of prayer for Paige. Traditionally it would be a day of prayer and fasting, but I like the idea of a day of prayer and praising God. There is a story in the Bible about the Israelites preparing for a big battle, and God told the king to have everyone sing and praise God, and God himself would go fight the battle for them. He did, it was a great success, and Don Francisco sings about the event in a song I love, called "Jehoshaphat."

It would be a way to say, "Hey God, we are helpless in this situaton, so we are looking to You to do what medicine cannot." The times I have been able to praise God when things were rough have been really comforting to me.

Oh yes, they pulled Paige's picc out, and will replace it with a port next week, so Paige can have water adventures.

Ok. That sums it up. This last bad news is hitting Ben and me pretty hard, so your prayers are appreciated.

Monday

Today we go up to Dartmouth for a previously scheduled MRI. And I suspect we will get a talk about whether to do a little more chemo, or do nothing.

My plan of action is to research other hospitals, to see what they have to offer. The doctor called what she has something like chemo resistant - drat - well, it means untreatable cancer of the brain/spinal area.

I am going to push for them to put a port in her chest. It would be completely covered by skin, and she could then have baths and go swimming without us having to tape up her arm, which never worked well anyway. Because this girl LOVES to swim. We went to Dublin Lake on Saturday, and she walked in up to her neck. And then I held her and she wanted to go out even deeper. When it was finally time to go, she sat down in the water and said, "Wanna stay!" My little water baby.

OOPA DAISEY :(

We knew that we were still waiting on some tests, and one result came back this morning. It was not good - it was the spinal fluid biopsy from yesterday, and it had cancer cells. So Dana Farber no longer considers her a candidate for transplant. Ever. They think that she has had cancer the entire time, and some of the good results were just mistakes.

I'll post more later, but I really need a nap.

My gracious!!!

Paige's oncologist called on Tuesday, and said, "We have some sudden news..." Her spinal fluid biopsy of last week came back clear. And the bone marrow biopsy didn't look like regular cancer cells, so they sent it off to Boston to take a look, and Boston checked it out and weren't certain what the cells were, and told Dartmouth to start testing Paige in preparation for transplant.

And the week before they had given us a packet of information on how to discuss death with your kids. (And a most dreadful book on where you go after you die, filled with nebulous descriptions and cosmic illustrations. I gave it back to them, and said, "heaven is way cooler than that.")

So Paige and Ronda and I went up to the hospital today for lots of prep tests. Here was our itinerary:

8:30 meet with oncologist

9:00 Audiology test

10:00 Echocardiogram

10:30 sedation and bone marrow biopsy, etc

1:00 pulmonary testing

2:30 opthomology testing

wrap-up meeting with oncologist

Two tests results came back from last week today. The cytogenetics test was clear, and the spinal fluid biopsy was clear. Unbelievable. So next is a MRI on Monday, and then off to Boston with the kids on Tuesday for a myriad of other tests. And then admittance to Dana Farber on Friday.

And our isolation begins today. No visitors, no visiting other homes, no crowded places. No Francesca. :( She's my wonderful cat. I am actually looking for someone to adopt her for one year. If you want a quirky, loyal, highstrung gorgeous longhaired cat, and have no other pets that would stress her out, send me an e-mail (kerri-beth@juno.com) . She follows me everywhere, and I'm really going to miss her. And Paige is going to miss "Checkiss" as she calls her.

Paige's hair fell out again.

So your prayers are being answered!! Pray that the tests will continue to come back good, and that Luke and Paige will stay healthy between now and Friday.

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!"

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!"