I'm okay. You're okay.

Thank you everyone for your encouraging words and it's sweet of you to say I'm not a Scrooge.  Even if it made me want to stick my tongue out and yell, "Am so!"  It's good that so many have faith in me.  My husband in an attempt at solidarity told me that he's feeling the same way and that made me even more sad.  I mean, hey, I get it.  Really, I do.  But what would have made me feel better would have been, "Honey, I've got enough Christmas spirit for the both of us!  Bring on the cheer!"  Is it coincidence that cheer and beer rhyme?  I THINK NOT.  Sorry.  Random thought there.  Back on track.

So there were fun festivities in the house in the past few days.  Curly the Elf, a distant cousin (wink wink) of Curly the Clown showed up to do his balloon magic tonight.  He brought his gorgeous wife with him and she is every bit as talented.  She did these amazing face paintings and if my phone camera would show a larger print I would post them here.  But you'd need a magnifying glass and it would just look like someone threw up on Rachael's face.  Not at all like the gorgeous sparkly butterfly that it was.  One of the kids here has been through chemo and has no hair and she painted the fanciest "Christmas" with holly leaves and berries and sparkles across her forehead.  It was awesome.  Then the kids got to meet Santa and I figured out what to get Rachael for Christmas!  Except not.  When he asked her she said, "I don't know."  That makes two of us kid.

I'm starting to make friends and bond which is fantastic but a little bittersweet.  I can't wait to leave but it will be hard.  It's been a long time since I've invested in a new friendship like this.  One family here has a little girl who can (and usually does) have multiple seizures a day.  Seizures that she must be resuscitated from.  So there has to be someone awake in their room 24/7.  She and her 16-year old daughter take turns so it's usually party in Jeannie's room at 2 AM.  Perfect for a night owl like myself but can you imagine?

This morning I inadvertently created some drama and if you are on my facebook you already know about it and realize how stupid I felt.  Long story short I thought... no, I KNEW my wallet had been stolen.  I had searched everywhere, had Tom freeze my card, put signs up in the elevators, cried in the doctor's office and had the whole house thinking we had a thief among us.  And when I decided to search AGAIN in my car I found it.  But hey, the cry was nice and cleansing so that's good.  Did I mention how idiotic I felt?

Rachael is doing well and we only have six more treatments left.  Tom is supposed to come tomorrow but they are predicting 2-4 inches of snow.  Snow!  Can you believe it?  It will be the first time Rachael has ever seen it and I left our camera at home.

Okay, before I sign off, I want to say something to all the people writing me saying that they are reading and sorry they are not commenting and sounding... I don't know... guilty?  Defensive?  The main reason I did a shout out to those who comment most was NOT to make the rest of you feel bad, it was to alleviate my own guilt.  Some of these ladies write to me almost daily and I pretty much never acknowledge their existence right now.  I just wanted them to know that they buoy me and I appreciate them.  It wasn't to make all of the others feel like I think they don't care.  I know you are reading and that you love us.

Now, let's all have a group hug.

Not quite "Bah Humbug".... but close.

I can't believe we are in the middle of the holiday season.  If it weren't for Alvin and the Chipmunks playing in my car non-stop I could forget entirely.  Thanksgiving was so low-key it was almost surreal.  The volunteers who came in and cooked for the families are really something else and have truly inspired me.  I'm not sure how I will incorporate volunteering in the future... we're just not there yet, but wow do I want to be like these people.  They descended on the house before 8 AM and made a fantastic meal.  And there were so many who were willing to give time in their day, away from their families and their own meal preparations.  And... AND!... they cleaned up afterward!  This was easier than the year we went to a restaurant for Thanksgiving.

My parents came and of course Tom and Marc were here and after a 1 PM dinner my parents left and tryptophan set in and Tom passed out.  For the rest of the day.  He wasn't feeling well so a 9 hour nap was not something I would begrudge him.  It just made Thanksgiving very strange.  We didn't watch the Macy's Day Parade.  I didn't cook.  No pumpkin bread (even the year we went to the restaurant I still made pumpkin bread), no post meal clean-up (not that I'm complaining) and then it was just quiet.

Marc and I hung out and had a great time.  He's at that age I guess, where I vacillate between thinking he's the most amazing and adorable and clever and funny child ever to grace my life and wanting to strangle him.  There's no in between.  And as much as my kids missed each other they sure found creative ways to irritate the snot out of one another when they finally got together.

So, I decided that I wanted to go home for the weekend and despite the drive, which I'm starting to loathe, was a great decision.  It was just good to be away from cancer and sick kids for awhile.  Although I found myself really worried about a few kids in particular.  One made it through a harrowing surgery with flying colors and was all smiles tonight and the other received a new liver this morning and will remain critical for at least 48 hours.  My prayers are with this baby that he will make it and also with the donor family who lost a baby and then made the incredible decision to donate organs so another baby might live.  There are no words for that.

So, home.  It was good.  I saw two movies, got to go to church, visited a friend and her new baby, had a game night with friends, and spent some fun time with Marc.  Oh and we put up our Christmas tree.  Which reminds me again that Christmas is almost here and I have never felt more unprepared.  I honestly just want to cancel it this year and normally I love Christmas.  I just have no enthusiasm and I can't pinpoint exactly what it is.  I'm not unhappy I just don't feel a lot of joy right now.  I know a huge part of it is the fact that my mind is preoccupied a great deal of time with sickness, cancer and death.  Another huge part is just being away from home.  Normally I make a Christmas chain for the kids and they take turns each night ripping a link off.  A visual reminder of how close Christmas is getting.   I'm not home and don't feel like doing it this year.  I'm sorta hoping my kids will just forget if I don't remind them.  Snort.  The other thing that is hard this year is I have no idea what to get Rachael.

None.  Zip.  Nada.

Except overly priced plastic crap that she will squeal in delight over and then never play with for the rest of her life but still manage to spread all over her room.  I'm at a total loss.  Except how about no more cancer treatments?  That would be cool.

Speaking of Rachael's cancer treatment, her blood counts are not high but seemingly stabilized and we are able to continue with interferon.  So yay!  My daughter is healthy enough to continue receiving a drug that makes her irritable and sleepy!  Really though, we are very glad.  And as far as the irritable and sleepy part goes, it's not awful.  People who saw her this weekend were surprised at how great she looks and feels.  And today she said that she felt great after treatment.  Mondays were supposed to be the hard days but she is sailing through so we are truly thankful.

I don't want to feel this way.  I want my children's joy to be contagious.  I want to continue the traditions that we have started and be excited but I'm just NOT.  You know, I thought I'd feel more of the "spirit of the season" when it cooled down.  All weekend the kids wanted Tom to build a fire in the fireplace but it wasn't going to happen with 80 degree weather outside.  "No Marc, we cannot build a fire when we are running the AC!"  But this morning it was freezing cold and instead of feeling the crisp air and joyfully thinking, "Christmas is coming!" I was just cold.

Call me Scrooge.

I'd like some cheese with my whine.

This place is starting to fill up with families in for Thanksgiving.  Lots of new faces and luggage downstairs and the place is downright hoppin' at night.  I'm waiting for the kids to fall asleep and then I'm going to go down and play a game with my mom who drove in tonight with Marc.  It's good to have company but stressful having Marc here.  If it were only him it wouldn't be so hard but my two children together are like gasoline and a match.  Pretty harmless on their own but potential within, but put them together and it can be, well, explosive.  And not in a bad way either, although there is that too.  They just feed off of each others' energy and it is impossible to reign in without getting all crazy mommy on them.

Some other women and I were talking about our children last night and one woman said that she asked a black woman once how it is that black children seem to act so perfect.  Now, this is an awfully broad brush she was using here but I do think there is a bit of cultural truth in it.  Many black families do seem to have these children who are very well behaved.  Anyway, she asked this woman and she told this story.

"When a woman is about to have a baby, I tell her, from the beginning, act crazy enough that your child thinks you just might be."

Now, I'm not sure I ascribe to that exact style of parenting but it did make us all laugh and give each one of us a moment of... "Hahaha!....  pause ..... Hmm."

So where was I?  Oh yeah, both my kids are here.  And tomorrow Tom and my Dad are coming in.  And all this is great and Rachael is feeling good and overall we had a good day.  I just feel very out of it.  I mean, I can engage in conversation and talk and even laugh, it's just I don't feel the zest of life.  Which, hey!  That's probably really normal.  This week is going exceedingly slow.

Things aren't as bad as I'm making them seem on my blog.  This is just working out to be my dumping ground.

I want my life back.

Week Two

I'm posting tonight this morning, glad with the knowledge that others in this house do not know I write a blog and read it because I'm about to get all sad for our situation and it's one that many others would be doing backflips if this was all there was.  But for me and my daughter it's hard to see some cold hard numbers about what this "medicine" is doing to Rachael.

She had bloodwork and labs done today and the numbers aren't fantastic.  It's all a bunch of medical blah blah blah but the two numbers they are keeping an eye on are her neutrophil counts and liver function.  The normal range for the neutrophil is between 1700 and 7300.  The last two labs she had done were at 2440 and 2960.  Today it was 560.  Which means she is pretty immune-compromised.  I had thought if we were home I could have sent her to school and gone to work because she is feeling so great but today we were told to not take her into crowds and call immediately if she runs a fever.  So obviously the cesspool of kid-germs school would not be an option.  Grocery stores aren't an option.  And she got a mask, which she hates.

Next week they will test it again and if it's below 500, they will stop interferon and test again that week and wait until it goes up before they start again.  So being here longer looks like a very real possibility.  Which wah, wah, I might have to be here five or six weeks instead of four but it is still very depressing.  I would say that I don't know how the people who have to be here for months on end with no end in sight do it but the truth is, they just do because they don't have a choice.  And it just sucks all the way around.  I find most people sleep all day and one guy spends every waking moment completely inebriated.  It's a house filled with cancer and depression.  Nice place, clean, well stocked, many amenities, pretty but not quite "home away from home".  Unless home is a place that drives you to drink.

Other than her inability to fight off infection, Rachael looks and acts extremely healthy still.  She had pretty much no side affects to today's infusion and she is still eating and awake all day.  Except one thing.  She is extremely irritable.  Extremely.  She has her moments of joy and spontaneous "I love you mommy" outbursts but they are tucked between bouts of frustration and rage.  It's scary because I know we are just at the beginning and I have heard horror stories about how this drug can seriously mess up a person's psyche.  These stories run the gamut from depression to rage that has led to abuse in a man who never showed signs of being abusive to suicide.  Interferon messes with serotonin.  Which is the "feel good" hormone.  So a big part of me is hoping that what I am seeing is normal five-year old angst but another part of me is bracing myself for the storm.

Right now she is sleeping and so beautiful and peaceful.  And in these moments I think, "Tomorrow I will do better by her.  I will play more with her.  I will cook with her.  I will read more to her."  But the reality is when I play with her I invariably and quite unintentionally irritate her and she stomps off saying she doesn't want to play anymore.  And when I cook with her she complains the whole time about everything and there is no joy there and when I read to her she tantrums when I finish because she wants more.  And it won't matter how many more there are.  I want desperately to make this better, easier.  But the truth is she is angry that she has cancer and I can't take it away.  And so she is angry with me.  Because I have told her so many times that I want to make it better.  That I wish I could take her pain away.  That I would gladly take this from her.  But I haven't done that and so she is mad at me.

I just spent the past ten days reading a blog from a woman whose newborn died at six days.  I found her blog while looking for support for my friend who just lost her three-month old.  The situations are entirely different from mine but one thing that really resonated with my life is this idea of "abiding".  Those who were willing to abide, who expected nothing in return but made it clear to her that they were always there and really wanted to know how she was doing are the ones who she leaned on and appreciated the most.  I want to abide with Rachael.  I want to be there with her and for her and expect nothing in return but I'm finding as her mom, her primary caretaker, her nurse, her disciplinarian, this is impossible.  And it makes me so sad.

Rachael, I hope you know how loved you are.  My baby.  My sweet girl. 

Love Fest

I'm not feeling very wordy today and there isn't too much to report.  We had a relaxing day with Tom and Marc.  The siblings were back to normal... you know, irritated that the other is breathing the same air.  When they left, Rachael watched a movie and then I read four books to her.  Something I have gotten out of the habit of doing and she was ecstatic.

I thought I'd take tonight to give a shout-out to my blog cheerleaders... the ones who let me know I'm not posting into a void.  I started this blog to keep a record for Rachael, help me through my feelings and allow me to update those who asked without having to talk on the phone.  But somewhere along the way, people started reading and even commenting.  Thrilling!  As any person who takes part in this naval gazing exercise called blogging, it's way more interesting when you think someone might actually read what you are saying.

So, to my friend Robin... thank you!  You have encouraged me so much and made me feel a great deal better about how I handled certain situations with just a few words.  I love you and you totally win the prize for being my number one blog-cheerleader.  You can put it next to your mother of the year award!

Lone Star Ma... It means a great deal to me that you are reading and care about us.  I liked you from the first day we met about four years ago but it is through this experience that you have come into my life in such a significant way.  Thank you for loving me, mother to mother, through this journey.

Amanda... what can I say?  You are my real-life cheerleader and I love that you leave comments when you could just text me!

Kim.... Thank you for all the encouraging things you have said to me and how you love me even though you know me!

Jenni.... I am so so sorry.  The fact that you take time out to see how our family is doing is humbling.  You are never far from my thoughts as we battle this.

Carrie.... Wow!  I can't believe how you take the time to continuously encourage me.  Thank you my sister.

Lisa.... I've already told you how your love for my family and for me has really touched me in ways I can't even describe.  You are the true definition of the "neighbor" Jesus spoke of.

Connie... I feel like you are the friend who is "abiding" with me.  You have shown me that you are here for me and that is very meaningful.  Thank you my friend and please bug me to have lunch when we get back.

Anonymous.... Sometimes you say the best things and I wish I knew who you were!

I know there are many others who have told me they are reading and who have commented.  And I also know there are others... friends, family, strangers, the computer illiterate who can't seem to figure out the comment thing (I'm looking at you Pamela) who think of Rachael and pray for her and that is what I'm most thankful for.  I just wanted to say a special thank you to this group of ladies who have continuously let me know that they are reading and caring and keep me looking for something interesting to talk about!  I love you man!

Now if only I could remember where I put my spare car key.

Short term memory loss seems to be a common complaint of parents.  It's got me thinking that there must be some sort of biological need for this phenomenon and I think I know what it is.  Species preservation.  If it weren't for my extreme short-term memory loss my children would be in big trouble because Marc would have been abandoned about five years ago and I would have dropped Rachael off at the local zoo yesterday.  But!  Luckily for short term memory loss I was enamored with my children today.

So yeah, yesterday.  It was a really hard day for a whole lot of really insignificant reasons that when they were all put together in one big suck soup had me in or near tears most of the day.  Rachael acted HORRIBLE all day long.  I mean from 20 minutes into waking up all the way through and I'd love to say I handled it in a manner fitting of my mother of the year award but in fact, around dinnertime I finally yelled, "You are being an ungrateful brat!"  And I didn't even feel very bad about it.

Cancer has made Rachael a bit spoiled.  And some of that is okay because frankly, she has to go through a lot of things no five year old should and if that means she gets a stuffed animal and lollipop just for walking through the door that's okay.  But it becomes a problem when I feel held hostage by her temper every time she asks me for something I won't give her.  Like candy for breakfast.  Her tantrum/sulky mood/deep sighs/frustrated grunts/stomping feet/angry glares/bouts of crying lasted well over an hour when I would not give her candy for breakfast.  And the morning was already tough because of other things so her mood was making it much harder.  And in the afternoon when I decided we needed to bond and have fun together I took her to the Children's Museum and played with her for two hours.  We had a blast and when we left she turns to me and angrily says, "Why don't you ever have gum?!"  I was like, "Huh?" and then she goes on about how she didn't have any fun and she doesn't even like that place.  So that culminated in me calling her an ungrateful brat which I'd venture to say was completely true.

Emotionally I'm struggling.  It's hard being surrounded by cancer all day, every day.  There's a heaviness in this house but even when I'm having a bad day, I can't complain because my bad day means something entirely different from my next door neighbors bad day.  I know I have a right to feel like this is hard and we can always find someone in worse shape, it's just that if you are having trouble losing 20 pounds for instance, you don't complain about it in front of someone who needs to lose 100.  Yesterday I met a mom whose child has a different cancer but much the same prognosis.  He doesn't need chemo so he looks healthy, save some puffiness.  It was absolutely wonderful to talk to her because I felt like I could talk freely about our struggles without being insensitive.  I have friends at home who are very supportive but there is something special about connecting to another mom who is in the same boat.  And for the first time since I got here, I feel like I did that.

And this morning they went home.

It just made me want to cry.  I was genuinely happy for them but I just wish it could have been timed differently.  I think we had the potential to be really close.  Jamye, if you are reading I'm glad you're home but I'll miss you.  And thanks for all the food!

Today though, Tom and Marc came and it was a wonderful day.  We went back to the Children's Museum and the kids were hilarious.  They have this place called Kidtropolis which is basically a city run by the kids.  They have all these centers like emergency services, news station, bank, city hall, grocery store, and restaurant.  Watching them get into the play had us busting out laughing a lot.  Marc, in one week, looks like he has grown so much and he made himself head chef and would make all this food and then send the girls out to waitress for him.  At one point he yells out, "Okay everyone, break time!"  There were just so many little moments with the both of them where we could see how much they are growing up and what kinds of people they will be and it was just fun to be with them.  So I guess I'll keep them around.

God bless short-term memory loss.