Monday, November 30, 2009

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.

Tuesday, November 24, 2009

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. 

Monday, November 23, 2009

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!

Saturday, November 21, 2009

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.

Thursday, November 19, 2009

The one where I start out all happy and end up depressing everyone by the end.

I have a serious aversion to clowns.  The week before Halloween, Tom and I went to San Antonio and while we were out walking one night there was a freakishly scary clown walking around and I just about jumped out of my skin.  My heart was pounding and I was hiding behind Tom like a two-year old clinging to her mama.  Even circus clowns freak me out.  I'm not sure where the paranoia about clowns came from but I am not alone as evidenced by the fact that one can buy this t-shirt:

Makes perfect sense to me.  So it is with great pride that I tell you I did not run screaming from the room when Curly the Clown showed up to make animal balloons for the kids tonight.  I could tell there were others who were trying to look very very intently at their food for fear that he would see them and they would die but I put on my game face and announced happily to Rachael, "Look!  A clown!"  I use this game face when getting on an airplane as well because I don't want to pass that particular phobia on either.

Anyway, Curly starts making the standard balloon animals and shapes.  A princess crown, a sword, a turtle and lady bug and then he starts making the really elaborate balloons and I found myself starting to warm up to Curly.  If I were really rich, I would fly him into my hometown to attend my kids' birthdays.  Or just to hang out and entertain me while I make dinner.  My world was opened up to not only see the beauty in a balloon but also to make room for one clown.  But only one.

Rachael is feeling great today.  I can tell she has lower energy but as I'm alone here I'm not minding that so much.  Her appetite has definitely decreased but she is still eating.  She gets headaches but they don't make her cry.  It seems her body is adjusting to interferon and amazingly, she is sailing through.

It's at this point I want to say, "Glory to God," and that is true but I struggle with that.  I'm just typing off the cuff here so go with me for a minute.  What if God does not answer prayers about health as a "favor" as it may be to those who pray but for some other reason?  We have all known of people who were deeply prayed over by many and who remained sick or died anyway.  I think this is what so many people struggle with.  Does God play favorites?  Why bless them but not me?  Or why bless me but allow my friends to experience the death of their three-month old daughter?  I think of the man whom Jesus told to get up and walk, and the man did just that for the first time.  Was there someone who was also crippled who truly believed and desired to have the same done to him but remained lame?  How did he feel?  It just makes me think there must, MUST be some greater purpose to healing than simply to make the sick well.  I don't have the answer.

Cancer is so indiscriminate.  Just in this house there are so many countries represented.  There are middle-class white people like me here.  There are single moms.  There are alcoholics.  But they all have their children here and they all pray for healing.  And some of these kids will die anyway.

How can I claim God's blessings in my life and then look at the 13-year old girl who was just told she has to have chemo and will now lose her hair.  After the surgeries and the radiation burns, now this.  We had a good day, yes, but my heart is heavy.

It's not that I'm ungrateful to God for answered prayers, I just don't understand how or why.

Wednesday, November 18, 2009

10.1" of happiness

Tonight's post is coming to you from my brand new netbook!  Oh how I love thee netbook!  See how excited I am?  I'm using all my exclamation points right here in the first paragraph!!

So yesterday Rachael and I went on a wild goose chase for a cable for the portable dvd player.  This hunt took three hours (this is where yesterday's title came from by the way) and was ultimately successful.  She had been asking all day to watch a movie but the three t.v. rooms were always taken so I decided to bite the bullet and go out in search of said cable.  After three hours and three different stores we finally get back to the RMH and Rachael is beside herself with joy because finally FINALLY she can watch her Barbie movie.

We triumphantly make our way up to the room, plug our dvd player into the wall and yay!  Power!

Except the screen goes black.

No problem!  We'll just turn it off and start again.  Rinse.  Repeat.

Our dvd player is dead.

At this point I'm not sure who is more ready to cry.  We go downstairs in the vain hopes that maybe, just maybe they will have an available t.v. room so she can get her fill of Barbie mind-numbingness but they do not.  Then all of a sudden, an angel appeared from the sky named Gabriel!  No, no.  Actually her name was Bailey and God bless her a million times, she says, "We have a dvd player you can borrow."

I didn't even bother to pretend to be all, "Oh no.  I couldn't possibly."  I resisted the urge to fall at her feet and weep in gratefulness but simply managed, "Oh My God!  Bless you!  Bless you and thank you and yes!"  Thank you Angel Bailey for saving the day.  Next time I make myself a B-52 I will think of you and say a toast in your honor.

So this morning I told Tom that I needed to get a new dvd player and he says, "Would it be worth it to just get a netbook?"  Why yes.  Yes it would!  (See, I can't talk about it without the exclamation point.)  It did mean three more hours of running around.  Can I just ask, who would willingly live in this city?  No offense to the locals, you have nice shops and oh do you love your Asian food but seriously, I'm thinking about limiting my time on the streets to the hours of 1 AM and 4 AM.  It takes 30 minutes to go three miles in this city.  But I navigated it and now I am sitting here typing on my new netbook(!).

I should mention that Rachael wanted to watch a video on it but when we got back, lo and behold, there was a free t.v. room so she got to curl up on the couch watching Kung Fu Panda while I played on my new toy.  Maybe tomorrow I will let her watch a video on it, but only if there isn't a t.v. room available.

Tuesday, November 17, 2009

And on top of it all Houston traffic blows!

I'm sitting here wanting to update but I just don't know where to start.  The past two days have been hard but at the same time, I'm surrounded by people having a harder time.  I told a woman today that in my "real life" people would be feeling sorry for me but around here it's just Tuesday.  She has a three-month old waiting for a liver transplant so yeah, get in line with the sympathy.

I was really hopeful, and a bit in denial I'm sure, that interferon would be no big deal and she would sail through it.  Yesterday they hooked her up about 5:30 PM and she got her first infusion and she was feeling fine so I'm thinking, "Woo hoo!  Home free!"  Oh sweet naivety.

As soon as we walked out of the clinic she started complaining of a headache.  Within ten minutes she was outright crying from the pain of it and I started to get worried.  What do I do?  Is this normal?  They can give a person a huge list of side affects and one can shake her head and say, "Yes, yes, I understand," but until it's your kid who is freaking out with throbbing head pain it doesn't really sink in that the side affects train is headed your way and you can't stop it.  So, I took her back up to the pediatric floor but they were closed down.  I ran into a nice oncologist who said, "Interferon?  Yeah, that's normal."  So, with the hopes that he was right and my child wasn't going to have a sudden brain aneurysm I took her "home".

Last night was not fun.  The headache was followed by stomach pain and that was followed by copious amounts of puke.  I've cleaned up puke before but this was the absolutely most foul smelling vomit I could have imagined.  I'm trying to get it all cleaned up and doing my best to not add to it and Rachael, noticing me dry heaving says, "What are you doing?  Are you going to throw up too?"  I'm all, "I'm trying not to!" and she laughed!  Head pain, stomach aches, puking and she still has it in her to laugh at her mom about to lose her cookies.

After she threw up she got cold.  Really, really cold and three blankets did nothing to help.  She was just shivering and crying.  And the shivering made her puke some more.  So, we finally drifted off a little bit and suddenly she goes, "I feel heavy!"  Heavy?  I didn't read that on the side affects list.  What does that mean?  She, in typical Rachael fashion, gets irritated with me that I didn't know exactly what she meant.  "You know mommy.  Heavy!"  Then she throws the blankets off her and begs me to turn the fan on her.  The room was cool but she was so hot and thirsty and please, please throw me in a bath of ice cubes I'm dying of the heat.

She was so hot to the touch.  So unbelievably hot.  It was at this point that I realize I don't have enough tylenol to last us through the night and - can I be more stupid - I didn't bring a thermometer from home.  And it's 1 AM.  I say to her, "Rachael, I am going to need to get a thermometer and some more medicine.  Do you think I can leave you for a little bit?"  She said okay and with furious prayers that she doesn't have a seizure I go out in search of a 24-hour CVS.  I get back within 20 minutes and thank you Jesus she was okay.  Her temp was 103.1 and this was 30 minutes after I gave her a dose of tylenol.  So I give her motrin and within 20 minutes it started to go down.  About an hour later it was normal and she felt fine.  And we slept.

This morning we get up to do it all again.  Today the symptoms were longer lasting but not as severe.  No puking (yet) but she had a nasty headache all day long and her stomach hurt.  Plus her body hurts and she's cold.  And tomorrow guess what?  We get to do it again!

It dawned on her today that we're going back and what they are giving her and that the two are connected.  This was not met well and at one point she even said that she doesn't want Daddy and Marc to come visit us because she will be sick.  How sad is that?  I assured her she'll feel better on the weekend because she won't have to get the medicine on those days but right now, three days seems like an eternity.

She did get to participate in the Children's Art Project today (it's every Tuesday morning) and this evening she was talking about it as, "Remember what we did yesterday?"  So, the days are long right now.  And it's hard without support.  It's hard to get to the grocery store and do laundry and shower when I have a child who is hurting.  And it's hard emotionally because she is mad and guess who gets the brunt of that?  She told me earlier that she is sick of me being her mommy.  And Tom is discovering it's hard running a household and taking care of a child who has homework and getting everything done when one works full-time.  This would be easier to handle at home but I do not regret or doubt the decision because the long-term benefits will outweigh this hard time.  But it's still hard.

I want to get her in school but she's in no shape yet.  Tonight she was lying on the couch while five little girls around her age were running around squealing and having a blast and she had zero desire to join them.  She wanted to be here so bad and enjoy it but she just feels like crap.  It's so sad.

For the first time, I'm really feeling like I have a child who is fighting cancer and though there is compassion here, sympathy is something that others cannot spare.

Sunday, November 15, 2009


In the words of Rachael, "Tomorrow is the big day!"  Poor thing.  She's actually excited.

I can sort of see that though.  Starting means we're getting closer to ending.  We are all looking forward to removing the catheter and we have to use it for what it was put in for before we can do that.  The Ronald McDonald House is really special and I know she's excited about that.  I just pray she feels well enough to enjoy it.  We leave around 10 AM and I am updating my blog because I'm supposed to be packing and it rates up there with my top five least favorite things to do.  Like eating peas.

I wanted to write about something here because I don't want to forget it.  I want to be able to go back and read it again and in my sharing, maybe I'll give someone else something to think about.  This morning our pastor talked about heaven.  I cannot possibly do justice to all he said but there were a few things that were new to me and had a great impact.  These are the parts I told my kids.

"Hey kids, Pastor Micah talked about heaven today and it was really awesome!"

Marc:  "Is it true that in heaven the streets will be made out of gold?"

"Funny you should mention that Marc because Pastor Micah was saying that gold is the most precious metal we have on Earth and can you believe that THAT is what they use to fill the potholes in heaven!  Imagine if the stuff we walk and drive on and hardly even notice is gold how much more beautiful the rest of the place will be."

Kids:  "Whoa."

"Yeah, and you know, God took six days to make the Earth.  You've been on top of a mountain before, think of how beautiful it is.  And the sunset!  Isn't it gorgeous?  Well, imagine if God did that in six days what He could do with eternity?  Imagine how beautiful it must be!  You know how fun Disney was and how they just thought of everything?  Well, men made that place in about 50 years and this is God we're talking about!"


"Yeah, and remember the absolute most fun and amazing thing that's ever happened to you.  Well, the most boring thing in heaven will be even better than the most incredible thing here on Earth!  And kids, in heaven we won't ever be in pain or feel lonely.  And also, everything will be brand new all the time!  There won't be anything old!  And it's real!  It's a totally real place!"

Micah said it's our home and that God is preparing a place just for us.  I've never been so excited to go.

There was a reason I wanted to tell my children about this place called heaven.  Tuesday night when I was laying in bed with my kids we got to talking about God and heaven and I asked them, "How do you think you get to heaven?"  They both said something along the lines of, "I try to do good stuff like go to church and be nice to people."  I was able to share with them both that night about the awesome power of God's grace and how they can't work their way there.  That the only way to get there is through the power of the resurrection of Jesus.  I used simple language and answered their questions along the way but I was sensing understanding, particularly in Marc.  I said to him, "Marc, is this something that you want?  To give your heart to Jesus?"  He said, "Yeah.  Probably in about 10 years."  I said to him, "You know, you can say a prayer and ask God to forgive you for the bad stuff in your life and to use his power to forgive you and save you.  You can say this prayer alone or I can help you.  You don't have to wait."  I totally expected him to say he would think about it or maybe later but he was like, "Yeah!  I want to do that."  So I led him through that prayer and he was so earnest and sincere.

When we finished he was choked up but he had the hugest smile on his face.  He was completely and uncharacteristically happy.  He said, "Mommy, I feel like I can breathe for the first time in my life!"

Wow.  WOW.

I told him, "Marc, I want you to know, that prayer has changed your life and you will never have to say THAT prayer again.  God wants you to know more about Him and to talk to Him everyday but from this day forward you are a Christian."  He jumps up and says, "I'm a Christian?!  I'm a CHRISTIAN?!!"  Rachael gets up and yells, "He's a Christian?!  I WANT TO SAY THAT PRAYER TOO!!"  So we ran and got Daddy and led Rachael through that prayer and my children were jubilant.

And Marc in particular is changed.  Put it this way, when we got back from Disney I asked him if he told his classmates about his trip and he was like, "Not really."  But Wednesday after school he told me that he was telling everyone there that he is a Christian now.  He is so excited.  The only time I have seen anyone this stoked about their new salvation was when Tom first understood and believed. 

Marc is still Marc but he seems gentler.  Kinder.  He has a desire now to care for others and he wants to talk about it a lot.  For those who know him, this is really huge.  And he really REALLY wants to get baptized.

Hearing about their future home today was thrilling and I praise God for His love for my children.

Friday, November 13, 2009

Best laid plans and all that.

This has been one full week.  Yes, indeed.  Thursday and Friday were totally full.  What?  Those two days don't constitute a week you say?  Well I say OH YES THEY DO.

Tuesday I get a call from MD Anderson saying, "We're just reminding you of your appointment on Thursday for labs and blah blah," and I say, "Well, we're starting interferon that day too, right?  I mean, I've got my whole life planned out for starting interferon so that is what's happening, right?  RIGHT?"  The appointment calling lady had no idea what I was talking about so she calls Dr. H.'s nurse and she says, "I'm not sure, let me talk to him and call you back."  About an hour later she calls back and says, "Rachael is just coming in for an assessment before she starts treatment and then we'll start on Monday."  Ohhhhkay.  Again, everything planned out already but I can go with this.  After all, it means I don't have to go home and pack for a month because I have a whole other weekend at home which is nice.  On the bad side, it means I have to drive to Houston Wednesday night and turn back around for home on Thursday and then go back again on Sunday.  But that's okay because hey, it's a whole weekend at home!  Including Friday when I can get all packed and relax and it will be so nice (this is ominous foreshadowing, by the way)!  That was especially good news because I had been feeling not well and a couple extra days to relax might help me feel better.

So we get to the clinic on Thursday and it seems that our decision to do the trial of interferon came as a bit of a surprise to them.  I want to tread carefully here because I know Dr. H. reads this blog so I won't use all caps and use creative language when describing my frustration but I had felt pretty confident that I had informed them more than once of our decision and it seems that this appointment might have included more than just some blood work if there was any protocol that needed to be completed before starting.  But when I get there I guess it suddenly became real to them and so they had to call in a bunch of favors and drag people over who weren't even scheduled to work the clinic that day to get Rachael into all the other places she needed for tests that were prerequisites for the trial.  Bottom line, I thought we would be leaving for home around 2PM on Thursday and was informed around noon that we had appointments scheduled for the next day.  Furthermore, to make sure she got everything done, "Why don't we just delay the treatment for one week."

Let me reiterate - my whole life is planned out already for this month!  (See that, I went bold instead of crazy caps.  Restraint!)  My husband has changed his work schedule.  We have plans for when I'm supposed to get back.  I understand there may be complications that might delay us anyway but I don't want to guarantee the delay from the outset.  And why didn't anyone figure out I was going to need this stuff before I showed up?!

So, in the past two days Rachael had her pupils dilated and was examined by an opthamologist, she had a lung x-ray, an EKG, an echocardiogram, a CT scan and a PET scan.  And because of said favors and doctors being called to the clinic there was a lot of waiting.  And normally I'm really okay with waiting but I guess the combination of being totally unprepared for the extra appointments (the ONE time I don't bring the DS or even books!) and feeling increasingly more sick and the lack of sleep because of being sick I did have one not-very-proud moment where I threw a little temper tantrum with tears and everything.

But we got it all done and we can go ahead with interferon on Monday.  I sorta missed out on my "relaxing Friday" though.

Now for the cool stuff that happened.  We got to meet another little Melanoma Warrior, Chloe and her mom Missy.  I've mentioned Chloe before here and though we didn't have much time together it was really fun for the girls to meet.  Chloe is an amazing wealth of information and her mom is very encouraging.  She said several times, "Once all the testing is over it gets really easy."  Let's hope Rachael's experience is like Chloe's was!

The other amazing thing we got to do is spend the night at the Ronald McDonald House.  This place is FREAKING AMAZING!  Let me just say, I hope I have visitors this next month because to keep the greatness that is the RMH to ourselves would be a darn shame.

I have so much more to share but that little sickness I was feeling a few days ago has turned into a full-fledged kick my butt illness.  So, I've taken my newly acquired antibiotics and I'm going to go to bed.  I will start updating more again now so I'll fill in the rest of the week - which had some truly amazing moments, over the next few days.

Sunday, November 8, 2009

Tears and Joy... intermingled.

I could not bring myself to journal this past week as I mourned for my friends.  Their loss hit me pretty hard and my sister in-law said it is because I cannot help but project my feelings about Rachael into a little.  I'm not sure if that's true.  I think it's devastating enough without having to project but the way I process grief seems to be a little different than others, so maybe that is true.  I do find it easier to grieve for others than for my own.  I don't know if that's normal but it's my way of coping, I guess.

This week feels like it is headed towards us like a freight train.  Rachael and I leave on Wednesday for Houston to start the one-month, high-dose interferon.  It's the right decision to go there, of that I'm convinced, but as it gets closer I'm having some serious ambivalent feelings about going.  I'm pretty much ready for this to be all over and in a way it's just starting.  It's hard to not resent it a little especially when she is completely healthy looking.  As of September 24th when they removed all her lymph nodes and they came back clear she is "NED" or "no evidence of disease".  Which means, from what we can see, she is cancer free.  This next year is preventative and if it weren't for the medication she will be taking, our lives would return to normal.

I know that there is a chance of re-occurance, but I will not live my life waiting for it.  I think what I have now is perspective.  Rachael is not dying.  She is happy and healthy and to waste energy thinking about it any other way is almost disrespectful of the blessings we have.  If that changes in the future, we will deal with it then.

Now... drumroll please... presenting my little birdie (or as we affectionately called her, our "Flamboyant Little Gay Peacock"!)

This year Marc designed his own costume.  He was going for "Psycho Ninja".  I'd say he pretty much nailed it.

Joy... tears... It's hard to process it all.  I am working on thankfulness.

Thursday, November 5, 2009

Heaven Is The Face

Driving to Houston this morning I heard this song for the first time.

To all those who have lost a child, my heart is broken tonight for you.

Heaven is a place where there is no more goodbye 
And no more not enough.

Tuesday, November 3, 2009

There will not be a new update for at least another day.  I will be attending a funeral tomorrow and I simply don't have it in me to chronicle everyday things right now.

Our family is doing very well though and I will show pictures of Halloween when I post again.

Sunday, November 1, 2009


Yesterday was an incredibly emotional and difficult day.  A close friend of mine lost her 3-month old granddaughter very unexpectedly.  She was a little sick and went downhill faster than they could help her.  There are no words.

You know how people say their hearts are heavy?  Mine felt like it was in a choke hold all day.  The kids were so excited about trick-or-treating and getting dressed up and there were things to do but I just wanted to lay down and cry for this family.  Please pray for them.  I spoke to the mom today and she said, "I just miss her so much."  God.  I can't even formulate a prayer.

I will show you the kids' costumes but I need to give it another day.  Hold your babies and be thankful tonight.