Today I brought my girl home in a box...

It is just NOT RIGHT! But I couldn't stand the thought of the alternative either. Keeping her in a big freezer in a box until spring and then putting her precious body in the ground. There was NO WAY that was going to happen.

Yesterday marked the passing of the first week since Jossilyn left us. Can it be so long? Impossible.

Today I finally started to unpack the things we brought home from the hospital It has been sitting in the middle of our kitchen since Friday. I sat and picked her sweet pinky hair off her coat and cried. She had me wash the coat in the hospital and I wish I hadn't--it doesn't really smell like her now. Most everything she had in the hospital is tainted by that hospital smell. Her little pajama top smells like her CVL dressing and flushes to me.

Kelsey has been sleeping in Jossilyn's bed.

We watched part of a tape Kelsey made of our trip to the Birka event (SCA) in NH January 25-28. The last we have of Jossilyn and I wanted to asked why WHY didn't she get more footage of Jossil. But it would just hurt her. She didn't realize. None of us did (though I had my concerns...) But Jossilyn looks so good. She was so sick--dying. And she just looks cute and not sick.

I have spent much of the last week racking my brain. Trying to figure out what we could have done differently so that she wouldn't have died. But, dammit, there is NOTHING. Nothing was working. None of the chemo or the antibiotics or any of it. And I feel so damn sorry for myself because I miss my precious feisty girl. And that just pisses me off because I hate feeling sorry for myself. I feel pathetic. And it doesn't help because I still miss her.

I DON'T WANT TO DO THIS ANYMORE.

Jossilyn as inspiration

We are active in the SCA. This picture of Jossilyn was taken last June at the Midsummer Gathering held in Houlton, Maine. She had just finished making the necklace and 'crown' she is wearing from wild rose buds.

At least three members of our "shire" have been inspired to write songs for her at her leaving us.

For Jossilyn.....

There's a new star in the sky tonight.

It wasn't there before.

Tho' its dim light is hard to see,

It shines with something more.

There's a new star in the sky tonight.

It is a star, I'm sure.

It twinkles even brighter now;

Red, yellow, white, azure.

There's a new star in the sky tonight.

I know this may sound strange,

But I'm reminded of a child's laugh

As I watch its colors change.

There's a new star in the sky tonight,

Up there with her new chums.

And if you squint and look just right

They make a shape much like a drum!

There's music in the sky tonight,

Because of that new star.

The sound will chime long in my ears

A playful repertoire.

Whene'r I gaze at that new star

in its constellation fun,

I'll be reminded of a little girl

I once heard play a drum.

I'll recall how she danced and smiled,

Her spirit full of light.

That newcomer up there in the sky

I'll name Jossilyn's Drum tonight.

With deepest sympathy,Gwillim

We are home. It is very strange. I guess it still isn't real for us yet--like Jossil is at a friend's house and will be back home in a couple of days. I see her in everything: the shampoo that she picked out, her dolphin mosaic she made and hung on the door, "hand me downs" my two little ones wear, etc. She's not gone. She CAN"T be gone. We just can't see her right now...

Kelsey and I sat up talking about Jossilyn until about 2am. Not crying really, though we both got a little teary. We both wonder when it will hit us that it is all too real and worry about how that will be... The boys were in and out while we talked and Kaylin and Josie were sleeping.

The service was on Monday. When we left the church, Josie said "I want to see Jossiryn smile." It broke my heart all over again. She and Kaylin had no hesitation to touch Jossilyn, patting her hand and her face. Of course they are full of tough questions.

Their father has gone back to his job in Martha's Vineyard. It was a relief to see him go. I only wanted to kill him 5 or 6 times for asinine things he has said the past 1 1/2 weeks. I had to consciously remind myself that I can't expect him to be anydifferent than he is. (He is NPD--narcissistic personality disorder.)

Before he left on Monday he invited the kids and me to come down to the Vineyard and visit so he could hang out with the kids. I told him I thought we just needed to hang out and try to get used to living our lives without Jossilyn. He said, "Oh yeah, I know what you mean. I'll call you next week when you guys are over it..."

NEXT WEEK.

Yes, he said NEXT WEEK!

On the first day of spring...

We lost my Jossilyn at 1:16pm on March 21st.


This was the last picture taken of Jossilyn on March 18th. She had a really good day that day.


She was talking to her friend Sarah, making plans for Sarah's visit on Tuesday--never realizing Joss would be in SCU on a respirator by Tuesday. Sarah came anyway. I was so proud of her. It was so important to Jossilyn. It was one of the last things she talked to me about just a couple of hours before they put the tube in.


I love my girl so much.


It still hasn't sunk in that she is gone. I suppose it will these next couple of days when we have the service and all.


She is so beautiful.

It happend so fast...

The doctors put Jossilyn on a respirator last night around 1. Today her brothers and sisters and other family are coming to say goodbye. It is a relief to see her able to breathe and rest easy. Indesciribably difficult to realize that this is it.

Just before they started the procedure, she sat up and gave me a huge hug. When I told her I loved her, she said, "I know..."

Jossilyn was moved down to SCU this morning around 3:00AM. She is not doing well. Probably less than 5% chance that she will pull through.

Last night Jossilyn developed another fever

I have been expecting it . When asked, or when posting, I would say that she seemed better--mostly because all her vital signs were fine. But I knew she had something brewing. She has been very subdued since Tuesday evening and anyone who knows Jossilyn knows that "subdued" is not an adjective used to describe her.

She has also been complaining of abdominal pain since Wednesday, but the doctors could not pinpoint a cause. So they just gave her some pain med--morphine. Yesterday her pain was increasing and she finally spiked a temp. 38.8C (102F) Fortunately Tom was the resident on call--he is the one I actually like and trust.

She had to go down and have a CT scan done at 2:00AM. The colon appears irritated and an infection is starting to develop on her liver. I was up until 4:30AM.

So her antibiotics have been switched up again. They d/c'd one and started another. She received a platelet transfusion this morning. They started her on an anti-fungal med, amphotericin, for the infection which could have side effects that may necessitate the addition of some Demerol. (Evidently the nurses have nicknamed it ampho-terrible because it makes you feel really crappy.) They have started her on TPN (IV nutrition) And she now has PCA which is a continuous morphine drip with a button she can push for an added boost if needed. Tomorrow she will go down for another CT scan unless her condition worsens, in which case she will go down again tonight. In addition to all this, the CT also showed that the 'pneumonia" in her lungs has worsened.

She has mostly been sleeping today.

Tomorrow, when Ashley is on again I will ask about the larger ramifications of the situation. I was not ready to hear it today and certainly not from Mike, the resident who is on now.

It has been obvious all along to me that she is much sicker than she was in 2005. But she really did extraordinarily well. Not that it was easy or anything, but comparatively it was. Is this "normal?" Do they expect this stuff? Or is it a bad sign that she is just having one thing after another?

I try to prepare myself for the worst. Prepare myself? Is that possible?? Brace myself, maybe. Steel myself. I struggle with what to say to the other kids. I don't want to worry them unnecessarily, but I don't want them caught completely unaware either. Right now, they aren't asking too much. Kelsey, Jacob and Kaleb know things are serious. They know things aren't going as well as last time. Kaylin and Josie???

How am I supposed to do this?

"The world doesn't need to be a classroom--it's the WORLD!"

This quote jumped out at me today. I tracked down Guerrilla Learning: How to Give Your Kids a Real Education With or Without School and have been reading it again. I have read it before although it's been quite awhile. I want to give it to my oldest sister, Kelly, when she comes down on Sunday.

My 15 year old nephew Spencer is struggling at school. They are VERY mainstream, very well-indoctrinated. He works hard, does his best and is starting to feel like he is "broken"--that there must be something "wrong" with him that he just can't "get it." (Meaning English class in particular, essays is general, etc.) He is getting very frustrated and it is starting to spill over into other classes and stuff. He gets mad at Kelly when she tries to talk to him about it now. I have been talking to her on the phone a lot this week swinging back and forth between how things are here with Jossilyn and what is happening with Spence.

I have been doing my best to refrain from my knee-jerk"radical" opinions and take a more middle of the road approach that would be less frightening for them than a complete break from school. ("Let's declare education a disaster and get on with our lives." Frank Smith) She kept saying, "I don't understand why he can't just do it." After trying to talk her around and through this I finally told her she just needed to accept the fact that she probably will never 'understand" it but she needs to accept that this is the person he is. He has always been a conscientious student--granted with much prompting from parents. But he is finally starting to give up and no amount of prompting, encouraging or threatening is having any effect. Except of course to make him more frustrated and angry. He is an awesome kid and I hate to see this happen.

I have been explaining that he has options and discussing those various options with her. I hope he comes down with her this weekend so I can have a chance to talk to him too. Kelsey is going to find our copy of the Teenage Liberation Handbook for them also. I don't know if Spencer will read it but I hope at least Kelly will. I also said that Kelsey and Jacob would talk with him (They are 15 and 14) but we'll see.

I also got a little frustrated with her last night. I ended up saying, "Think about it this way. What if you got put in this position? What is he is diagnosed with a life threatening disease tomorrow? What would you do different? What would be important? Why wait?" I upset her and she told me she thought that was an unfair thing to say. But it is true. It could happen. It helped to give her a different perspective on the issue though, which is what I wanted. Who is important in this picture? Spencer.

I can only hope that it makes a difference.

Something that I'm finding odd...When I am home and we are living our "normal" lives and doing our thing, I don't think too much about the theory of unschooling. It is just our life and has been for years. I am so thankful we found this path all those years ago.

Another week without seeing them...

So Jossilyn's week of chemo is over. Hopefully she will feel up to visitors. Unfortunately, it is supposed to storm this weekend so my mother will not bring the rest of the kids down to the hospital. We have only been home 5 days since January 31st.

I MISS MY KIDS!!!!

Two nights ago I was on the phone talking with them until past midnight. It was fun but so NOT the same as being with them. The next morning my mother called and APOLOGIZED because they were up so late, including 5 year old Kaylin. She "confessed" that they are often up late, though Kaylin is usually asleep by 10:30-11. She also "confessed" to letting Kaylin just fall asleep on the couch or whereever in the living room. LOL I have told her numerous times before that this is how it is with us. Not only is it okay, but it is "normal." Obviously she didn't really believe me. I think the only reason for her "confession" was that I spent quite a bit of time on the phone with Kaylin. She announced that she was feeling very "talkable" and proceeded to be just that.

We have been unschooling for quite awhile now. When Jacob didn't go back to school for third grade, we never did "school at home." Not at all. I just let him loose to do his own thing from the get go. When Kelsey and Kaleb decided to join him at home 5 months later, it was the same way. I will admit that I was not advertising to anyone exactly what we were doing--or not doing, as the case may be. My family flipped when I decided to have my babies at home. Again with "extended" breastfeeding. Even more at the idea of homeschooling, let alone UNschooling. (We won't even talk about Kaylin's unassisted birth. )

My parents are learning about unschooling the best way possible. They are LIVING it with five of my amazing children. They (my parents) are so damn lucky! I was somewhat concerned that they would press for the kids to be put in PS or to be doing what looks like schoolwork to them. It wasn't an issue in 2005 because we were in the hospital mostly during the summer. But they seem to be doing okay with it--or maybe they just feel outnumbered.

Your Personality Is Like Acid

A bit wacky, you're very difficult to predict. One moment you're in your own little happy universe... And the next, you're on a bad trip to your own personal hell!

What Drug Is Your Personality Like?

You Are Animal

A complete lunatic, you're operating on 100% animal instincts. You thrive on uncontrolled energy, and you're downright scary. But you sure can beat a good drum. "Kill! Kill!"

The Muppet Personality Test

Gilmore Girls just isn't the same without Kelsey...

Jossilyn and I watched Gilmore Girls last night and I really missed Kelsey. She is my "Rory"--minus the school thing of course. The sense of humor between Lorelei and Rory is similiar to Kelsey's and mine.

I registered Kaleb, Kelsey and Jacob for Not Back to School Camp last night. There were so many things we had planned for this year that we are not going to be able to do because of this stupid cancer.

I haven't completely crossed the Live & Learn Conference off my list yet. Maybe I am being overly hopeful, but we were looking forward to actually being able to go this year. Here we have been unschooling for , I don't know, 6 or 7 years and I never heard f it until right after the 2004 one. Then in 2005 Joss was diagnosed and we were in Boston because she had just received her first BMT. Last year it was in NM--a long haul from Maine, not to mention we were in the midst of the one year post transplant battery of tests and she hadn't received the go ahead to actually be able to do something like that. It was on the calendar for this year and this had to happen again.

The biggest disappointment for the kids is not going to Pennsic. http://www.pennsicwar.org/penn36/index.html
We have been planning that trip for the last 6 months--making garb, etc. But no matter what Joss won't be allowed to go camp in Pennsylvania for two weeks. There are other SCA events we won't be able to go to either. Panteria is definitely out as it is in Vermont in May. Great North Eastern War --probably a no go also... The youth fighters were going to invade Canada this summer too. I wanted to go to the Black Rose Ball in a couple of weeks. But there are a few things that still might be possible. Granted we won't know until the last minute, but we'll take whatever we can get.

I am hoping the NBTSC is something the oldest three can look forward to. I won't be surprised if Kaleb opts not to go. I think it will depend on whether I am home or not. But overall I think it will be a good break for them.

Jossilyn: STILL NO FEVER!!! The cytarabine (aka Ara-C) really seems to wipe her out and that was over yesterday. Her lungs are sounding better. Her breathing is easier. Her respiration and pulse rates are almst normal. Her bruises still make me cringe but they are fading. The one on her shoulder still looks nasty. It covers her whole little shoulder. And the two from Thursday's bone marrow aspiratation. She is complaining of a headache, though. She seemed to perk up yesterday for a while, but suddenly had a downturn in that she just is not acting like herself. Maybe she is sad. She is not talking much--very subdued for Jossilyn. It scares me. Gives me that horrible feeling that this ime she won't make it. Like she knows something I don't know...

Frustration abounds

Last week Jossilyn was assigned a new primary resident. I have been having "issues" with him all week and was very frustrated by the whole situation. He seems like a nice enough fella and all, although he doesn't seem to "click" with Joss. He is DEFINITELY not used to working with oncology kids.

I taught him how to say Jossilyn's new chemo med--mitozantrone (mye toe ZAN trone). Twice, mind you. It does not inspire much confidence on my part here.

I have also heard "I think we should just wait and see," WAY too often. I dreamed that I woke up and Joss had a lot of blood running down her legs. I called the resident (his name is Mike) in and he said (in the dream, that is) "We are aware of the situation and we are waiting to see what happens." THAT woke me right up and I had to go over and check Joss all out to make sure she was okay. Then I went out and talked to the nurses. I know it is not just me as the nurses have had words with him this week and two got kind of pissed off and pretty much yelled at him.

I might have had more patience with it if it had been a better week. Well, actually no. Probably not.

Another crappy night

Jossilyn's temperature is 40.1C (that's 104.2F) Her pulse is hovering around 180. She has had 4 x-rays in the last 36 hours. Her lungs are filling up with fluid. She has what they call an infusion. Apparently that is fluid btween the ling and the chest wall. What's causing it? Good fucking question. No one seems to know. They are talking about doing a chest tube tomorrow.

I am so afraid cancer is killing my baby by slow inches and all I can do is watch

Did I mention leukemia SUCKS?

So, as expected, the cancer is still there. It is proving more aggressive than was hoped. Even though her counts haven't recovered, they are starting the next round of chemo within minutes. More Cytarabine which has been her major chemo drug right along. The new one being added that she has never had before is Mitoxantrone. It is blue. It turns the urine blue. It can also turn tears, sweat and the whites of the eyes blue. That sounds like a lot of fun, huh? (NOT)

I was told today that it is not uncommon for relapsed AML to not go into remission after the 1st round of chemo. Is, in fact, common that it needs a couple of rounds. What if this time doesn't work? I asked. They were somewhat evasive. "There are other things we haven't tried."

I need to not think that far ahead. We won't know if this round works for another 4 weeks at least.

People keep saying, "You are so strong." I don't feel strong. I don't want to have to be strong. Some nights I feel like I might just fly into a thousand pieces if someone touches me.

Wednesday night was bad. Real bad...

Just listening to my baby breathe...

There have been worse nights. When we first came in in 2005 and that first week we were here last month. But that doesn't make it any easier.

Her temperature spiked to 39.8--that's about 103.8. She woke up and threw up. Her breathing is labored. X-ray just came up and took a chest X-ray. The nurse is drawing blood cultures now. Also a CBC (complete blood count) and a BMP (that is to measure electrolytes and stuff.) This is like the 4th time they've drawn blood today. She is attached to the monitor right now. (For what good that does. )

At least I like the resident who is on tonight. Tom's a good guy and I trust that he will do his best and will not hesitate to call Eric (Larsen, who is the doc on call.) Some of the residents I am not as comfortable with.

I am tired and I can't sleep.

I can't help her.

All I can do is listen to her breathe.

Leukemia sucks

I just have a bad feeling this time that I never had last time. When we were here in 2005, I never thought that we would lose Jossilyn. There was never a doubt in my mind that she would fight this thing and come out top.

Tomorrow the doctors are going to go ahead and do another bone marrow aspirate and lumbar puncture despite the fact her counts still haven't moved. Her extensive bruising has us concerned that the leukemia is still there. There are also bumps under some of the bruising. It might be the leukemia. AML sometimes does that. Even if tomorrow's procedures come out negative, they will probably try to biopsy some of them.

As I said, I just have a bad feeling. But I hope it is because of my own experiences. When we did this in 2005 we had no experience of some one who didn't make it--either directly or indirectly. But last February there was another unschooler about Jossilyn's age who lost a very short battle with ALL (the more common childhood leukemia.) While we had never met her, I was drawn to her story because of our own.

Then when we came back here in January, there was a girl in the room beside ours. Although, older than Joss she had been diagnosed the same summer we were. Same diagnosis--AML. I talked to her stepdad in the hall quite a bit. A couple of weeks after we came in, she died. No one said anything to us, but I knew when things started to get bad. Her last three days were tough. Then after she was gone, and her room was empty and the door was left wide open...I could barely stand to walk by it. I wanted to ask if the staff would just close the door, so I wouldn't have to be reminded of what I didn't want to think about.

I'm such a coward.

I am dreading tomorrow and the waiting. I don't want to know. But then again, I just want to know now. The waiting and the wondering and the hoping is unbearable. I don't want to hear bad news. But once I know, I will deal. I won't have a choice.

Friends and family ask me how can I stand it. What choice do I have?

I miss my kids

Jossilyn is still not feeling very good today. I miss being home. I miss our normal life. The rest of the kids were here last Thursday. It is nowhere near enough.


Kaylin and Josie like all the toys here.


Jacob has grown since I brought Jossilyn to the hospital. He was still shorter than me when we came in. Now he is taller than me and STILL growing. He loves chess. He learned how to play when he was five and could beat me without my "helping" him within 6 months. He is 14 now and he still loves strategy games.

He is also silly.




This is Josie learning chess while Jacob and my mother play.

I feel like so much of our time together has been robbed from her because of this rotten disease. She asks for me every day. And says, "Jossilyn get better soon so she and Mommy can come home."

I hope so. I hope so.

We have been down this road before. Jossilyn and I have talked about whether it is better or worse this time. On one hand, there is less fear of the unknown because we have been here before. On the other, there is a sense of dread because we know what we are in for. To a degree, that is. You can't ever really know what to expect because her condition can (and does) change in a matter of moments.

There is also the knowledge that her chances of cure are even less this time than they were last. The numbers suck. I try not to think about the numbers because in my reality it is 100%. Either it works or it doesn't.

Joss is so frustrated. "It's not fair! I shouldn't have to do this again."

She is right. It is not fair. But here we are again.

She knows her options. I wanted her to know that this is her choice and if she didn't think she could do this again, we would all respect her choice. (As difficult as it may be.) But there was no question in her mind. "I am not ready to die , Mom. But it still isn't fair."

It is so not fair on so many levels. But if anyone can do it, Jossilyn can.

Here we are again...

...in a place we hoped never to be again. My daughter Jossilyn is having a relapse of AML--that's acute myeloid leukemia. We got the bad news on January 30th of this year and had to come back to the hospital the following day. We have only been home 5 days with the other kids since then. I have 6 kids in all: Kelsey (15,) Jacob (14,) Kaleb (12,) Jossilyn (9,) Kaylin (5,) and Josie (2.)

We live about 100 miles from the hospital. I have been staying here with Jossil, and the rest are with my mother and father. I miss them. So does Joss. She is stubborn and strong and amazing, but very frustrated with having to do this all over again. This weekend has been an up-&-down weekend for her. She is usually spunky and feisty--yesterday she was chasing her favorite nurses in the hall. This picture was taken on Saturday.

Today she felt crappy and slept a lot. She has some horrible new bruises on her back and shoulders and asked me not to hug her because it hurts.
I wanted to cry.