Random Photo Friday

Catchy title, eh? Like maybe some sort of thing I'm going to start and every Friday you'll check on here and find a random Friday photo.  Or not.

Truth is, I don't have too much to journal about right now and I'm not complaining!  Besides the fact that the third grade is trying to kill me (seriously?  Seriously?!  Four... count them... one, two, three, FOUR big projects due in the next couple weeks!) our lives are pretty normal right now.  Hence, a random photo rather than an update.

This photo was taken a few days before her surgery to remove her lymph nodes and place the catheter.  We knew it would be our last opportunity to hit the water for awhile so we broke out the new cool SPF 50 swimsuit and hat, slathered on a ton of sunblock and headed to the ocean.  This picture was taken before Rachael got stung by a large jellyfish, hitting both arms and across her chest and leaving scabs that continued to swell up a month later.  But nevermind that sad bit of information and enjoy the beauty of the before shot.

And just because they are gorgeous and I love them, here's a picture of my men.

So there are my random Friday photos.  Of course, technically it's no longer Friday but I have not gone to bed yet so I'm going to count it.  Tomorrow.... well, later today, I will present a visual for the reason behind my late night.  Can I just say right now though that Tom and I cannot wait to see a certain little girl's reaction to our labor of love?

Tweet tweet, ya'll!

Who is this hip child living in my house?!

So, I broached the subject of GHOST! SCARY GHOST with Marc and no joke, he looks at me and says, "Mommy, ghosts are SO last season!" Oh, excuse me Mr. Vogue, I had no idea you were so in tune with the latest Halloween fashions.

At least he still called me Mommy.

Big Bird and Boo!

A few months ago Rachael found a masquerade mask with feathers and sequins in my closet.  Before my mother goes, "I don't want to know anymore!" let me assure you that it's been there for years from when Tom and I were invited to some sort of party.  Probably a masquerade one.

So, she finds the mask and I say, "Hey, we should have you use this for Halloween.  You can be a bird!"

Oh stupid me!  So now, like five months later Rachael wants to be nothing but a stinking BIRD for Halloween.  I've been trying to talk them into being ghosts but where last year that would have been like, Totally Cool! this year her mind is made up.  A bird.  All I can say is thank God Tom knows how to sew.

I did manage to find a homemade bird costume that looks really cute and the lady claims she made it in one night.  So maybe we can pull it off in three.  Marc hasn't decided what he wants to be yet but I'm really going to try to push the ghost angle.  "Nobody will know who you are!  It's the perfect disguise!  You can go in only your underwear underneath!"  What might tip the scales in my favor is if I tell him it's scary.  We've always had the policy that we do not allow scary costumes.  I know we had a reason for this in the past but this year I'm just tired and GHOST seems like such an awesome idea!

I was telling my friend Amanda that I get these comments about how wonderful I am and though I love to read them, I feel like you don't get the full story.  I told her I need to write about some of the lousy stuff I do.  So there you go folks.  I waited until the last minute so I am going to go against my principles and ask my son to be a scary ghost for Halloween.

I realize that's a pretty lame "lousy" thing but I don't think the internets are ready yet to hear about the time I tried to guilt my mother into making a bird costume for Rachael by saying, "But mom... she has cancer!"

My Best Friend

Tom and I decided that we needed some time alone to reconnect and have fun and refocus on each other.  We sent the kids to stay with Grandma and Grandpa for the weekend and headed to San Antonio.  Last time we did this was a little over two years ago when we celebrated our 10th anniversary and we are both so glad we did it again.  It was relaxing and fun and we barely talked about the kids at all.  I told my mom this afternoon that we were flirting with the idea of just not coming back and she said, "Flirt all you want as long as you show up."

Tom and I met a little over 13 years ago and I knew immediately that I never wanted to be far away from him.  I wasn't looking to get married as I had somewhat recently gotten out of a relationship that pretty much destroyed my faith in myself to make a good choice.  But I was so drawn to him.  We worked together and as I got to know him better, I began to feel such a pull that it was nearly painful.  About six months later he finally clued in to the fact that I am totally awesome and he wanted to be with me too.

What I love about our marriage is that we both still feel so lucky to have one another.  I was talking to a friend recently about how usually in a relationship one person loves more than the other.  I spent a good amount of time thinking about who that is in our relationship and I don't think there is an answer.  I think Tom loves marriage more than me.  That's not to say I don't love marriage but I still sometimes think it would be fun to be single.  I wonder what my life would be like.  Not Tom.  He would never want to be single again and I know if something were to happen to me, he would most likely remarry.  And I would be happy for him because I know that in a way it would be honoring to me.  Our marriage is such a safe haven that he would desire that again.

I love marriage but for me, it's marriage to HIM that makes it so sweet.  It's hard to describe my love for my husband without making the internets want to collectively puke but the same things that drew me to him that first moment continue to do so everyday.  How could I have known back then?  It astounds me.

For us, it comes down to this;  We never, ever doubt that we love each other.  We never doubt that we don't want to hurt the other.  Sometimes we do, but we know it's not our intention.  We want the best for each other.  We respect each other immensely.  We make each other laugh.  We have fun and act goofy and still find new ways to enjoy each other.

We have been through major career changes, four long-distance moves, buying two houses, unemployment, financial crisis, and now, a child with cancer and our marriage is so strong for all of it.

This weekend we went to a comedy show and one of the comedians was asking how long couples had been married.  One couple was married the longest at 30 years and the comedian was practically in awe of it.  He was going on and on about what an accomplishment it was and how he could barely wrap his mind around it.  Words cannot express enough the peace that comes from knowing that if, God willing we are both still around, we will see 30, 40, 50 years or more together.  Marriage is work and life along the way makes us both realize that we do have to be vigilant and continue to protect it but it is so sweet.

Thank you for marrying me Tom.  I am the luckiest girl.

At least it's not a six-month deployment to Iraq.

Tom and I have made a difficult decision this week that seems a little crazy on the surface.  We have decided to do the high-dose IV interferon in Houston.  Which means that Rachael and I will basically be moving there for a month.  I have many reasons for wanting to do this, even though it means we will be separated and financially it is scary but it comes down to this:  We cannot make decisions that we will later look back on.  This is a common refrain, especially among Melanoma Warriors because so much of the treatment has mixed results at best.  We have to make decisions we know that we will not be able to regret.

We have been offered a trial for Rachael's treatment of interferon.  The standard way of administering it has been four weeks of high dose through an IV, followed by 48 weeks of a subcutaneous injection done three times per week at home.  The trial would mean the same high dose IV, however the "sub-q" injections would be done only once per week and the intereron would be "pegylated".  I asked her oncologist, Dr. H. what this means and he said, "pegylation is a chemical process that prevents a medicine from being cleared from the body as quickly."  He said that he believes the 3x per week injection is actually out of the system within a few hours but he thinks they will find that they pegylated interferon stays in the body throughout the week so that she will have at least a low dose in her at all times.

Are there any chemists out there who can explain all this to me?

This trial appeals to me for many reasons.  First of all, there is mixed research about the effectiveness of continuing after the one month high dose.  The results of going ahead with the additional 48 weeks do not seem to offer much additional benefit.  Having said this, her oncologist, as well as the oncologists of the other parents I have spoken to who have children with melanoma all believe we would be crazy to not do it.  I've actually written about my angst regarding interferon here.  So the idea of a trial which Dr. H. has said it is essentially the same medication and they expect it to perform much the same way and which might just show better results and saves Rachael 96 injections over the course of a year sounds like something I want to sign up for.

I think this is a better plan for our mental health.  Because I know the results are mixed I can absolutely see in three or four or ten months into this thing we will have moments of "This is stupid!  Why are we even doing this?"  Being in a trial that may help pave the way for better treatment will help us in those moments.  That thought won't necessarily help Rachael but avoiding the 96 extra shots would get her vote.

Then there is the fact that we can always opt-out of the trial but we only have one chance to opt-in.

There is just the one big down-side to all this and that is we cannot do any of our treatment at our local children's hospital.  It must all be done in Houston which means of course the temporary move there for the month and frequent trips (probably once a month with a few overnights here and there) for the next year.

This is going to be hard but I have to say, after my experience in a different - albeit wonderful - hospital, I am honestly really relieved that we won't be splitting her treatment.  I know our local hospital is very good and I've heard great reports and if we had started here I probably wouldn't want to go anywhere else.  I just feel better doing it all at MD Anderson.  It's our hospital.

So, we're working things out and making arrangements and it looks like I will go there on the evening of November 11th.  We have the opportunity to meet another little Melanoma Warrior, Chloe, who is 10 years old and was diagnosed when she was 8.  I hope we can have dinner and give the girls a chance to play that evening before they return back home on the 12th.  On a side note, we are very excited to be sending out Christmas cards this year designed by Chloe!  Her angel was chosen this year by the Children's Art Project.

On a completely different note, while the kids were getting ready for school yesterday Marc kept running into my bathroom asking, "Can Rachael wear my belt?"  "Can Rachael borrow my socks?"  I'm all like, "I don't care," he runs out pumping his fists going, "Yesss!"  I hear them being all giggly and cute and when it's time to leave I see that my very different children who I wasn't even sure liked each a few months ago came out all matchy-matchy.

 They are really going to miss each other.

Ownership

We are learning to take the good with the bad.  It's humbling but necessary because otherwise, like my brother described it, we could look back at this time as one bad time followed by one not as bad time.  Rachael is doing very well but every single day there is something we wouldn't be doing or even be thinking about if not for melanoma.  I am finding I need to remind her more often that her life is not bad and there are many blessings.  Like dancing with Daddy at a jazz festival.  Or not losing her hair.

Something that is hard for any child, and especially one going through somewhat invasive medical treatment is the lack of control.  She tells me every day that she WILL NOT EVER have another shot again.  Or that she is going to simply refuse to do any more dressing changes and she is very firm that interferon is simply not going to happen.  She knows that she has no control but she likes to say it.  Tonight she told me again that the answer to something upcoming is "No," and when I told her that she doesn't really have a choice she smiled and said, "I know that, I just like saying no."

Good for her!

I love that that is one of her coping mechanisms.  Even though I know I have no control whatsoever, I am going to pretend I have a choice and exercise it.  I'm going to totally use this.  "Hey Rachael, let's just walk in together this morning and refuse the medicine.  Let's tell them that we quit and run away fast before they catch us!"  I should have recognized this sooner because even when she was at the height of misery her first day with the staph infection and begging, BEGGING to leave I looked at her and said, "Should I just unhook all this stuff real quick and we'll make a run for it?  Those doctors look slow, I bet they can't catch us."  She was so miserable but there was a twinkle in her eye at the thought of it.

I believe she's learning that though the things happening to her don't make sense, there is a necessary purpose and so I think that if I really did try to unhook her and make a run for it, she would stop me.

So that takes me to this incredible program offered at MD Anderson and many other hospitals around the world called Beads Of Courage.  The concept behind the program is that "Every bead tells a story of strength, honor and hope."  From their website:

What is the Beads of Courage Program?
The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

how it works

Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

I cannot say enough how much I love this program.  Rachael doesn't have any control over what is being done to her body right now and a lot of it is very confusing.  But with a simple bead she gains understanding, a sense of ownership and a visual representation of her own cancer journey.  I won't go over each bead and what they all mean but I can tell you this... If you ask Rachael, she knows. 

I'll be honest and say it does not make getting a shot or doing a dressing change easier but as her beads grow I see in her a sense of accomplishment.  It goes from "It happened to me." to "I did it!"

And that is a gift.

There's no place like home.

I have a lot of non-cohesive thoughts rambling around my head and I feel like I need to mentally vomit.

On November 12, 2009 we are scheduled to start the first of Rachael's interferon treatments.  This will last for one year.  On Thanksgiving she will be on interferon.  And Christmas.  And 4th of July and next Halloween.  She will spend her 6th birthday on interferon.  Next summer she will be on interferon.  She will be on interferon when she starts the 1st grade.

Have I mentioned before that cancer sucks?

Anyway, in between treasuring and soaking in these next three weeks, I am busy researching what the best course for her treatment will be.  I am not inclined to journal about the choices because this is a decision that needs to be made by myself and Tom and her doctor with the help of a few people on a certain bulletin board (hi MPIP readers!) and I have found that some comments meant to be helpful are in fact, not.  But the decisions are tough when the data is so incredibly limited.

Have I mentioned that pediatric melanoma is super rare?

Tonight, my friend Amanda was having a massive girls sleepover at her house and invited Rachael so naturally I was over there as well so I could hang out with Amanda.  Because getting to spend almost 24 hours talking non-stop on our last trip to Houston wasn't quite enough and we needed to catch up some more.  I was thinking how glad I was that Rachael was getting this fun time because we don't know if she'll be up for it when she starts treatment.  But, as I was about to do her heparin flush I noticed that the dressing covering her cathater was practically falling off.  Not good.  Not good at all.

Long story short, I had to do a sterile dressing change on her and it pretty much ruined her night.  I know she was tired anyway and it was a terrible time to do it but we had no choice.  It's just heartbreaking and unfair and I'm not sure what the next step after denial is but I'm thinking maybe angry might be accurate.  She did bounce back and want to enjoy the movie but the cries in the middle of the dressing change of "I want to go home!  I want to go home!" pretty much convinced her that even though she had been having a blast and the movie was good, really, truly, she just wanted to go home.  So she's sleeping in her own bed tonight.

And I'm glad.

Introducing my new favorite phrase.

Rachael's lymph nodes were clear!  This was news met with great relief and no regret.  I wish we could look inside lymph nodes without having to take them out but we can't.  I'm happy to know that even though they probably could have safely stayed put, we are now pretty sure we caught the melanoma plenty early.  So, RIP lymph nodes, sorry we had to cut you out.

Dr. H. also looked at a new bump on her elbow that has been giving me anxiety.  It started growing shortly after she fell down about a month ago and it looks suspiciously like another mole I was fairly unconcerned about.  He said it was "medically interesting" but we could take some pictures of it (they have a staff photographer who comes and takes pictures of "medically interesting" stuff) and compare it against its mug shot in a month.  When I told Tom what Dr. H. called it he said, "I don't like that one bit.  I want the least medically interesting things imaginable on my daughter's body."  For some reason though, the phrase "medically interesting" amuses me.  Maybe because I got only three hours of sleep last night.

I decided to take a break from stress and talking about "medically interesting" things and focus on my friend Amanda who was awesome and joined me on this trip to Houston.  I feel as though I can barely put a literate and cohesive sentence together right now but I loved seeing 3 AM with her.

Anyway, Dr. H. is not convinced it is a mole.  He said possibly a wart or even some sort of "medically interesting" thing caused by trauma.  This is when I pointed out that it had started after an elbow scrape.  Either way, I feel like I have given him the problem and now even though I will continue to look at it obsessively, I don't have to stop breathing anymore while imagining a conversation that went more like this, "OH MY GOD!!  CALL THE SURGEONS NOW!!"

Maybe that's why "medically interesting" seems almost cute.

Great!

A common and understandable question I get on a daily basis now is "How is Rachael?"  It's usually stated in a somewhat somber way and it is difficult to answer the "right way" because though I know the asker wants to hear a positive response it seems strange to say, "She's great!"  It's even a bit awkward to answer that way when say, my co-workers ask me, seeing as I just missed six days of work because she was decidedly not great.

Yeterday my Aunt Donna drove us home from Houston and I think she was a little blown away with how normal and happy and totally fine Rachael is feeling.  I had to call my boss a couple days ago and Rachael was near me and giggling and generally being disruptive but my boss said a couple times that it was so wonderful to hear her laughing voice.

What is strange?  Is it strange that people are surprised by her ability to quickly put the bad behind her or is it strange that I feel something like pressure to be somber along with those concerned?  It's weird.  I appreciate the concern!  Covet it even.  I LOVE that people are interested and want to know and I don't want anyone to stop asking but the surprise sometimes looks like disbelief.  I am truly no longer in denial but when things are good, they are good and this is a good week.  Last week... not so much but last week is gone.

It's different with kids.  Everyone says that and I see it firsthand everyday that she is not affected by the stress of her situation the way the adults around her are.  My parent's-in-law showed me a passage out of the book "My STROKE of INSIGHT", by Jill Bolte Taylor, Ph.D.  It sums up what I'm trying to say perfectly.

"It's important we realize that we are capable of feeling physical pain without hooking into the emotional loop of suffering.  I am reminded of how courageous little children can be when they become extremely ill.  Their parents may hook into the emotional circuitry of suffering and fear, while the child seems to be adapting to the illness without the same negative emotional drama.  To experience pain may not be a choice, but to suffer is a cognitive decision.  When children are ill, it is often more difficult for the child to handle parental grief than it is for the child to endure the illness."

Rachael absolutely has had some really painful things happen to her and there is more pain to come as our year of interferon approaches but she does not suffer.  I pray that does not change.

Tomorrow night I'm headed back to Houston for an appointment with her oncologist on Thursday.  I'm nervous because supposedly they should have the path results back from her lymph nodes and historically (like the one other time) when they don't call ahead of time it's because the news isn't great.  Maybe they don't have the results back or maybe they just got busy and forgot to call or maybe they didn't think good results would be any sort of surprise so they just figured they would wait until I got there.  This time though I'm coming prepared and bringing one of my best friends with me and our hope is that it will be an unevenful trip and we can just have fun.

And when we get back and people ask how Rachael is doing we will say, "She's doing great!"

Reflections from home.

Several weeks ago I found out that Rachael probably qualifies for Make A Wish.  My reaction to that was, "No.  No, she can't."  My friend put it perfectly.  She said, "You never thought you would have a 'Make A Wish Child'."  Exactly.

I've had several opportunities since finding out that she might qualify to look into it but haven't done so.  I can't even pinpoint exactly why I just knew it didn't feel right.  After our experience in Pittsburgh though I made a decision that we would go ahead and take the good with the bad and I would look into it and today when we went to MD Anderson (yay our hospital!) I did just that and they should be contacting us in a few weeks.  Our social worker said that she absolutely qualifies because of her diagnosis and age.  She was really reassuring and said that there is a bit of stigma associated with Make A Wish that a child has to be terminal to qualify which just isn't true and she said many parents don't take advantage of it because they don't want to think of their child as a "Make A Wish Child".  Has she been listening in on my phone calls?

Driving home today I was reflecting on the last few months and I can say that I am now fully out of the denial phase.  I think many things contributed to this but there are three things that happened this week that have changed my perspective on my daughter's diagnosis.

First, we had our first true complication. The procedures and pokes and pain and cries before this week were all pretty predictable and sort of expected. It was within the range of normal for what she needed to have done and though they were difficult, once they were over, they were over and she bounced back. Last week was different and it was so difficult and unfair and hard and at some point during the fevers and hurt and worry I decided that Rachael would get anything good she could out of this experience.

Second, a woman at the hospital today had a hat on that said "Cancer Sucks".  I love that and have said it many times.  There are those that think it's crass and we shouldn't say things like that but it TOTALLY DOES SUCK!  Acknowledging that it sucks gives us a sense of power and freedom that I can't even describe but it's sort of like when Rachael doesn't want to be told that she is brave because she isn't feeling brave or like giving her the freedom to scream at the top of her lungs when she is in a whole lot of pain.  IT SUCKS!  IT'S BAD!  But here's the thing.  That's not the end of the story.  The woman with that hat said something that has been repeated to us several times.  It's temporary.  It's not forever.  The treatments that we are going through are lousy and disruptive and generally sucky but our real life is awaiting us at the other side.  It was like an epiphany today.  Just because this is temporary and her prognosis is pretty good does not make it suck any less.  Just because we believe and hope and pray that all the cancer is gone from her body does not mean I have to deny it was ever there.  Just because the treatments she will need to endure are (hopefully) preventative in nature does not mean they are not as hard as those treatments that are curative.  Even though we expect to be okay, CANCER SUCKS!

My last shred of denial was stripped away as I was driving home tonight while I was reflecting on our journey so far.  It's hard to put it into words but to oversimplify my thoughts... our life has changed.  I no longer feel like the same person I was a few months ago.  The transformation was slower but it's nearly as profound as the one I had between before having my first child and after.  I know in the early days, this change will be more apparent and as time goes on I will go back to "normal" even if it is a new "normal" but it will be different than Before.  Rachael has changed, though we won't ever know how because she is so young.  But her life will be forever affected by her diagnosis.  Tom and Marc are changed even if I'm not even sure how yet, but there are differences.  Many of them are good and surprising changes but ones that would not have happened if not for this journey.

In many ways I feel very lonely on this road even while we have a crowd of supporters lining the streets for us.  There aren't many who join us on the actual path though and I feel a deep need to draw close to them.

I want Rachael to make her wish and participate in that club because, whether we want it or not, we have already joined.

What a difference a day makes.

I am clean.  I am wearing clean clothes.  I will not hear beeping in the middle of the night and we won't be woken at 7 AM by surgical rounds.  Thank you Pittsburgh for your hospitality and your new hospital is beautiful.  You have hired some of the best nurses in the world and even your food is pretty good but oh am I happy to be out of there!

We were discharged this morning and we are in Maryland visiting family.  Rachael is happy and back to her normal feisty self and oh, did I mention... I'M CLEAN!!

This experience has brought so many things about what we are fighting home for me.  It has solidified my resolve to advocate for my children.  It has given me a renewed appreciation for my support team.  And I am so glad it is over.  I am going to take a few days off from blogging to focus on family but another thank you is in order first.

Dean, thank you.  You are the most amazing brother ever and I hope Rachael grows up and marries someone just like you.  I'm sorry I tickled you to near death when we were kids and threw rocks at you and even occasionally tried to poison you.  I will take this experience and teach my children how important it is for them to love one another because you never know when one might be called to save the other.  I really don't think I could have handled this week without you.  I know you say I could have but it is the strength that you gave me that allowed me to be in a place emotionally where you could overestimate me.  I love you.

Goodbye Drain!

Just a super quick update to say that her drain is out, she was sedated and it went PERFECTLY! We should get discharged tomorrow. More details later.

Day 4.... Morning

Rachael is sleeping after being examined twice already this morning. I'm hoping it's because she was so tired but she seems to be hurting more today. The catheter site is hurting her but it's not warm and she does not have a fever. Maybe it's because of the adhesive. Maybe because the stitches were ripped out. Maybe it's something more, but it wasn't even that painful the day they put it in so I'm concerned.

We are waiting again. This time it's for anesthesiology. We have to see if they have an opening today. That sentence was painful to even write. "See if they have an opening." If they don't, we're here AT LEAST another overnight, possibly two. If they can get her in today then we'll probably have to stay one more night. As we wait she cannot eat. Again.

I met another mom a couple days ago and she said that she was in the middle of one of her shorter hospital stays. "So far," she says, "it's only been 11 weeks." God.

I would ask her how she does it but of course the answer is what choice does she have? I met another mom with TWO children with cystic fibrosis. She has to split time between two hospital rooms at times. And even this woman says that she can frequently look across the hall and be thankful her child doesn't have what the kid in the next room has.

There is a six-month old baby in the room next to Rachael's. She is awaiting a liver transplant and the nurses lovingly call her their "glow worm". She is so yellow it is honestly frightening. She has been there since birth.

So yeah, four days so far. It's hard and it's not fair and Rachael is too young but she is in the company of so many children... so many... who would trade places with us for anything.

Today, when you think of Rachael and pray for her, remember the other kids. Is there even enough prayer out there to compete with the suffering?

Yesterday I saw a family coming in to visit another child and there was a girl just a little older than Rachael visiting. She had on a pretty dress and cute shoes and her hair was freshly washed and in braids and it was the first time I felt a pang of jealousy that my child isn't as healthy. I don't think I took my kids health for granted but I miss being mostly unaware of the suffering. I miss thinking bad stuff doesn't happen to us. I miss having a carefree daughter who would think a visit to the hospital is an adventure.

Our lives are different now but what of those families who don't have a church family loving them? What of those families who don't even have enough faith to afford the luxury of questioning? What of those families who don't have hope of leaving shortly after Day 4? Remember them today.

Are we still here?!

This was in the top three of the longest days of my life. I can't remember any other day being longer but I'll give my 36 years the benefit of the doubt and guess that maybe somewhere, sometime I had a longer day. Except probably not.

I cannot possibly journal about everything that happened today because to relive it all would be tantamount to sawing a plastic knife over my wrists. So in the interest of sanity and brevity I will break this day into two categories. The Good Stuff and The Bad Stuff. A prize for guessing which list is longer.

The Good Stuff:

** Rachael woke up feeling GREAT.

** We got to go to the playroom and made art for a bit.

** I got a laptop in the room.

** Rachael woke up feeling great!

** I was able to get some MUCH NEEDED clean clothing items.

** Lunch was tasty.

** We have had the BEST nurses. You hear of people relying on their nurses and loving them and Oh My God is it true. Bless you women, we love you!

** Dean is here to spend the time with Rachael that I can't because I'm taking care of business.

** Rachael woke up feeling great!

The Bad Stuff

You know what... I don't even want to go into the bad stuff. Rachael was feeling great today and even though we were delayed and I had to be on the phone for hours. No. HOURS AND HOURS AND HOURS. And even though we finally got an answer on how they will proceed my relief is tempered by the fact that I have another battle in front of me tomorrow. And even though I don't want to be here and I'm still not sure we're even going to get to leave tomorrow I can say that she had a day where the pain was minimal, she's back to her sunny self and she's here.

Her doctor said today that they were very concerned in the beginning that she was going to go downhill and fast. So ultimately I can be thankful that she is here. And if I don't journal all the crap then eventually the memory will fade and I will simply be left with a feeling of joy that she is okay.

Tomorrow they will remove the drain. They want to do it bedside and I am going to fight them to sedate her. Pray for the doctors to be reasonable and for there to be absolutely none of the complications that they fear.

Thank you my friends and family. Thank you for standing in the gap for us.

I would use harsher language if this blog was completely private.

7 AM this morning one of the surgical residents came into our room and turns on the bright light.  Then she takes Rachael's drain and PULLS ON IT.  This is the most painful site on Rachael's body so of course she cries out and is then whimpering and trying to protect her body.  Then the woman has the audacity to ask Rachael if she can touch the site and Rachael says "NO!"  I said to the surgeon, "She is in pain and she doesn't trust you now."

This woman turns to me and decides a lecture is in order.  "We have to do an exam and be able to touch it to see if it is warm.  We need to decide if blah blah blah and blah blah some more so maybe we can send someone else in here that she will (and she actually uses the quotey fingers here) 'trusts'."

Then she waltzes out the door and slams it.

I went to her nurse and said, "I don't know if that woman is a student or an actual part of the surgical team (found out she's a resident.  Impressive.) but I don't want her near my daughter.  And in the future can you note in her chart that she is in PAIN and if a doctor wants to examine her they can do so gently.  And if they want to do another ultrasound on her today she will get Demerol or something else equally strong to help her.  We are NOT talking a little Motrin."  Her nurse was very understanding and obviously felt terrible for Rachael.  She made the note in her chart. 

I am officially in Don't Screw With My Daughter phase.

Staphylococcus Sucks

When I sit down to write a journal entry I try to capture where we are in the moment and if I can, I like to find humor in the moments. Unfortunately, I can't find any humor in the last few days.

I expected my next journal entry would have pictures of our long-awaited family vacation to celebrate Tom's parent's 50 year anniversary and I would have pictures of the kids doing fun things with their cousins while we were at Deer Valley.  Instead we got a one-way (so far) trip to Pittsburgh Children's Hospital.

With her doctor's permission, we headed to Maryland on Thursday, which was a vacation nightmare in and of itself.  Long story short, after being delayed over three hours because of bad weather in Dallas we got to Maryland after 1 AM to find that our luggage didn't make it.  So Mommy sob sob sobs and we get to bed around 3:30 AM.  The next day (Friday) we get to take an hour and a half (one-way) drive to the airport to retrieve the luggage and finally our vacation will start.  Family arrives.  Hugs, kisses, cousins playing and we head to Pennsylvania Friday late afternoon and arrive around 7:00 PM.  We had a lovely anniversary party and the kids got to play.  We put them to bed around 10:30 at night and Rachael felt great.  She was having a sleepover in her cousins cabin and life was good.

Sometime between 2 and 3 AM my sister and brother-in-law brought a crying Rachael to our cabin.  She was in pain.  I took her temperature and it was normal and gave her some tylenol with codeine.  At 5:30 AM I took her temperature again and it was going up so I told Tom that I needed to take her to a hospital.  I went to the Myersdale Hospital which is a small facility with an emergency room and they told me she needed to be transferred to Pittsburgh Children's because they simply did not have the facilities to handle her care.

Five hours after getting to the Myersdale Hospital we started our three hour ambulance drive to Pittsburgh.  After seven hours in the ER, we finally got settled in a room. 

Yesterday was the most I have broken down yet.  Like Amanda said, Rachael was devastated.  She begged me to leave.  Over and over.  The things she endured would have been barbaric if they were not (in most cases) necessary.  Three times, with her screaming like a caged animal to stop they tried to get an IV in her to no avail.  She threw up three times.  She was feverish and in pain.  She was beyond starving and couldn't eat.  It was horrible and all day she cried, "Do we have to stay here today?  Why do we have to do this today?  I'm missing all my friends.  Why does this always happen to me?"  Oh, and when they transfered her from her ER bed to her regular hospital bed the orderly... or whoever he was... didn't unhook her IV line or make sure it was long enough and they ripped a couple of the stitches out of her catheter. I was INFURIATED. I did not scream or yell or swear at the guy but he knew under no uncertain conditions that I was beyond angry. So on top of all the other crap she had to have someone from the IV team come down and change her dressing while it's sore and tender and has RIPPED STITCHES HANGING FROM HER SKIN.  The kicker is that she had been sleeping when it happened. How's that for a wake up. The woman who changed her dressing was an angel. I don't mean she had a sweet personality (though she did). I mean she was heaven sent from God above and if it wasn't idolotrous I would consider worshipping her. She took off the adhesive from Rachael's dressing without receiving even one "Ouch!" from the child. That was the first true miracle of the day.

Anyway, it's all long and irritating but we know she has a pocket of fluid where the drain is going in.  They know this because they did an ultrasound on the area which was pure hell.  She was in so much pain and just screaming.  If she had anything in her stomach she would have vomitted from the pain.  That's when I decided that they will NOT take that drain out unless she is sedated.  Period.  I will not sign the consent.

What they can't decide is how to get the fluid out.  They keep hoping the drain will do it's job and they won't have to remove it surgically.  The problem here is that it isn't their surgical site so they want to be very conservative about opening it up.  In the meantime, Rachael went almost 48 hours without food before they finally decided that they would officially "wait and see" until morning and we could feed her.

I want to say that she has recieved excellent nursing care here.  They have been sensitive to her sleeping and very gentle with her.  I know her doctor's are trying to do what is best and though the timing is getting frustrating I do believe she is in good hands here.  We know she has a Staph infection but so far it does not look like it's in the blood.  She is receiving IV antibiotics every six hours and her fever finally broke today.

I don't know what tomorrow holds.  I suspect more surgery which means we will likely be here another overnight.  The airlines were completely unwilling to bend the rules about non-refundable tickets so we will have to buy two more plane tickets to return home.  My brother is here so I have a ride back to Maryland and some much needed support (which is why I can be here updating).

I am glad we have the care we have.  I am glad we live today and not 100 years ago when my child would have died.  I am glad I have a boss that is understanding and gives me all the time I need.  I am glad we have insurance.  I am tired of being glad for things that come as a result of something that royally sucks.

I am having a hard time praying lately.  I don't understand.

Update

Thank you Amanda for updating. We will be staying at Pittsburgh Children's Hospital at least one more night. She is doing better today which can I just say THANK GOD! Yesterday was by far the hardest hospital stay yet. I'll give more details later, I just wanted to quickly say that she seems to be improving. We still don't know the culprit and she has a few weird symptoms but at least she is not in so much pain.

Urgent Prayer

This is Danielle's friend Amanda updating for her.

The Adams left Thursday for a long weekend to see the extended Adams family. Rachael has an infection and is being transferred to the nearest children's hospital about an hour and a half away.

To say that they are devastated doesn't begin to describe it... Rachael is in a lot of pain and is hungry. She wants to play with her cousins and see her grandparents. Please pray for healing and comfort.

I'll update when we know more.