Wednesday, September 30, 2009

Yes you are.

I've been naughty. Can I have my cookie now?

We're going to take a break from our regular programming to bring you an episode of "What the Heck Is That Kid Thinking?!"

Ah Marc.  I haven't mentioned him too much here because this blog was started to update family and friends on Rachael and help me journal through my feelings.  Here are a couple pictures of my son.

He's really cute, right?  God made him that way so we would be inclined to keep him and not send him back.  Ha ha.  Just kidding.  Mostly.  Now before anyone thinks I have a favorite child in Rachael I want to assure you that is not true.  I love Marc with a passion that makes me cry.  Loving him has in fact brought me to tears more times than I can count because I'm always afraid I'm not loving him enough, whereas Rachael has always been easier.  They are both very strong, independent, smart kids and so that can be challenging but Marc has always been a bit... more.  Parents of spirited kids are all nodding thier heads now.  They understand.

Anyway, he has matured so much in the last couple years but continuing to discipline him like I did when he was younger is not working.  I am implementing stronger consequences and he's not exactly saying, "Thank you mother for taking my toys away and giving me extra time in my room so I can consider my actions and change my wayward ways."  No, no.  He is going for the big guns!

"You don't love me anymore!"
"I'm just useless to this family."
"I wish I was never born!"

Tonight I looked at him and blandly said, "This is a consequence.  It doesn't mean we don't love you.  It doesn't mean you are useless.  It means you did something you should not have done and now you have a consequence.  Deal with it in your room."

Let me stop and say that it's not like we haven't had consequences.  We most certainly do, however, I think as he gets older they have to change and become, well... harder.  I wouldn't give him the same consequence in kindergarten as I do now that he is in the 3rd grade.  He should know better now.  Many will disagree and say if I had been tougher when he was younger I wouldn't have problems now but we'll just have to agree to disagree.  I think you do what works at the time and right now, harder consequences are going to work.  Or I might reconsider the cuteness trade-off for not sending him back.  But I digress.

So, we've been implementing harder consequences and I'm not sure he quite gets it.  As a matter of fact I'm pretty certain he doesn't get it and we will have to go back to "Reaping What You Sow 101".  Tonight when Marc was exiled to his room for yet another "yellow day" because of playing around at school he comes out and says, "Mommy.  Can I least have some entertainment?"

Monday, September 28, 2009

Thank You

We have been so showered with love that we just sit down at night and shake our heads. We don't even know what to say to each other, much less those who have given so generously to us. Gifts for Rachael and Marc both, financial help, meals... not to mention the prayers. It is all overwhelming and I want to thank some specific people.

To my dearest friend Amanda… I have needed you so much through this and you have been there for me every time. Thank you for immediately organizing the care of our temporal needs. I know I will lean on you more as this year progresses and I want you to know that I love you.

Dr. Dubberly… you have always taken me so seriously and your act of immediately identifying that mole as suspicious rather than simply looking at the odds and dismissing it probably saved Rachael’s life. You are the best doctor in the world and our family is forever indebted to you.

Tim and Susan… thank you for what you did. We will never forget that.

Lisa M… the care package you sent arrived the day before we went to the hospital and the kids were ecstatic but it was probably the biggest comfort to me. It was such a beautiful gift and showed me that people truly love us.

Mom and Dad H… you have been willing to drop everything to be with us when we needed it. I never once had to worry about Marc and that was huge. Thank you Dad for keeping me company on one of my trips to Houston and Mom, a special thanks for decorating Rachael’s room. She was so happy to be home and that made it even more special.

Mom and Dad A… the gifts make it feel like Christmas around here! Thank you for your willingness to entertain anything we are thinking of trying and giving us the possibility of even thinking about other options with your willingness to help. I hope we never have to use it but it is a tremendous comfort to know it is there.

Amanda, Lauren, Skip, Greg and Brad… thank you for praying over us that night. It was incredible.

Dean….thank you for all your advice about her tube. I was totally prepared thanks to you. And Jen, thank you for being there for all my questions.

To those who have already brought meals and those who will do so when we start interferon… my family especially thanks you! That is a true blessing.

To the prayer warriors… you all amaze me.

Tom… you are my best friend and I wouldn’t want to walk through this with anyone else.

Jesus… thank You for loving me despite my weaknesses and thank You for being Rachael’s friend.

Sunday, September 27, 2009

It's my journal and I can be long-winded if I want to.

Rachael is doing fantastic.  So well in fact that both kids were driving both Tom and I a bit batty today.  They missed each other so much they haven't stopped fighting.  This morning I reminded them both of all the tears and heartbreak they felt when they were apart.  I mean Rachael was downright lovelorn... if lovelorn could refer to a brother.  Everyday we had to hear about how she misses Marc and how she wants Marc and how Marc comforts her and Marc is the only one who could possibly understand!  Two minutes into the happy reunion it's all "But that's MINE!" and "Don't touch that!" and "STOP HUMMING BECAUSE YOU ARE MESSING ME UP!!"  But they no longer have me fooled.  I just yell at them both to go to their rooms now smile contentedly when they are fighting and say peacefully, "You two love each other so much and this is just your way of showing it."

Actually, when Marc got home last night he was so sweet with her for those first two minutes.  He was super careful and concerned and actually showing interest.  But then she was acting so darn HEALTHY that there wasn't really need for all that compassion.  He wasn't there that morning when we had to remove one of her bandages and it took an hour because of the pain and screaming and crying out in agony for her brother.  He didn't witness her being unable to even push herself up in bed because just the act of moving any part of her body brought back all that hurt.  He missed the whole puking after surgery thing.  He just saw this kid who he is under the impression he needs to feel a bit bad for on some level touching his new leggos and acting all annoying as usual.

I will try to commit myself to enjoying even these times because when she starts the high dose interferon then I think he will see exactly what fighting this disease can do.  Maybe for now he needs to save his compassion.

I was actually talking to Tom about this the other night... what fighting melanoma looks like.  It is hard to not feel on some level that we have done this to her.  Her body looks almost war torn right now.  She's got the big scar on her arm, a smaller scar under her arm with a tube sticking out of her skin.  She has the catheter on her chest and another bandage on her arm where they tried to put it in and failed, a little bandaid covering her arm where the IV was and marker notes on her saying where to cut.  She's going to be scarred and everyday we have to do something to her like clean something or drain stuff or inject heparin.  And meanwhile she is doing her best to just get better and be cheerful.  And we keep interrupting her goal to move on to say, "Okay, now is a good time to put you through an hour of agony as we remove a bandage that must come off."

She didn't have headaches or a fever that wouldn't go away or a suspicious chest cold that lasted for weeks.  She was completely healthy and happy and normal with just a little mole.  And now she has been cut and poked and she can't move quite as well and I have to ask her each night if she needs codeine.  And I think it's going to be much worse in a month when we start the interferon and she feels like she has the flu everyday.  Because seriously, she is recovering amazingly well.  She will be at school tomorrow and ready to run around and wrestle again in a week.  All this to say that I have to remind myself that what she has is serious and if we had done nothing she would have died.  I have to remind myself of her prognosis which many say is great but I say is not 100%.  Fighting makes her sick and I'm so glad we don't have symptoms of her cancer, just of her treatment but it does make it hard to shake the feeling that we are doing it to her.

This morning our pastor prayed over our family and others who are in difficult situations - which was just about every person standing there and then a few members of the band played this song which was written by Jeremy Camp shortly after his wife died.  How I can relate to this....
The only place I can go is into Your arms
Where I throw to You my feeble prayers

Well in brokeness I can see this was Your will for me
So help me to know that You are near

Friday, September 25, 2009

My hero.

It is goooood to be home!  Rachael is feeling a whole lot better and Tom and I are going to have a drink now that she is sleeping.  She is still hurting at times but she can move much more than she could yesterday which helps.  Last night she kept complaining of a mosquito bite on her butt but it was just chafing from laying on her back for so long without being able to turn over.  I spent a good portion of my time rubbing her butt.  Because that's what moms do, rub their kid's butt all night.

I have gotten a lot of encouraging notes here and on my facebook and a couple through email and it seems a lot of you think that I am "amazing" or "strong" or whatever.  I do not feel the least bit of that, and when I witness her going through so much... and the pain.   Last night she had to pee really bad.  To the point of almost screaming about it but she hurt too much to be able to get up.  And the bed pan wasn't working for her because she didn't trust it.  It was awful.  I finally got her up and the pain was so intense.  She looked at me at one point and her face was white as a ghost but the skin around her eyes was sunken and red and it just about killed me but she did it.  And today she woke up and told the nurses that she was "good" and through the bouts of continued pain and discomfort she laughed and giggled and as much as she could,  she played.  Now I know that kids are resilient and bounce back and all that but this little child of mine... she has JOY.  And that friends, is unchanged.  THAT is amazing.  THAT is strength.

What I do is absolutely no different than what any mother would do.  What choice do any of us have?  But to go through it in the way that she does is something to behold.


Thursday, September 24, 2009

Final update of the day.

She is in her own room now and watching the Disney Channel.  She's been having pain but God she is brave.  I can tell all of you that but we are on strict orders to not say it to her face anymore today.  She told me that she doesn't feel brave and she doesn't want to be brave.  The nurse said, "Oh, don't cry," (in a comforting way) and I looked at Rachael and said, "Baby, you cry all you want."  Just like her last surgery though, morphine and some jello makes it better.  Except they didn't have jello.  Only popscicles.  Even better!

She was under longer than they expected and she did throw up a little when she woke up.  Then she drifted back off and I had to leave her to go to a stupid class.  It's actually a very important class and not stupid at all but when I was leaving her before she was even aware that I was there for her, it felt stupid.  So I'm sitting in said class learning that this is going to be Way More Complicated than I anticipated and I get a text from Tom that she is in pain and crying for me.  Then another that says she really wants me.  Thing is, if we want to take her home, I have to take TWO of these classes so I really needed to stay.  A few minutes later he texted that she was better and then that she was sleeping.

She was still out when I got to her room but she woke up quickly.  She was hurting but wanted me to lie with her so I did, halfway hanging off the bed but we snuggled and she asked about all the tubes and wires coming out of her.  That's when she told me about the chest x-ray they had to take and how they kept saying she was brave but she didn't think so because she cried and she was tired of being brave.  Could she have broken my heart more?

After that she asked to speak to Marc so I thought, "Why not, might distract her."  Ya'll will NEVER guess what they talked about.  Wait for it.  Wait for it.....   Farts.  That's right, they made goofy noises at each other and told one another "Ah! I just farted!"  Then for some reason I think they got annoyed at one another.  So I expect things will be back to normal soon.

Thank you thank you thank you for your words of support and encouragement and especially your prayers.  We told her surgeon today that she is one prayed for woman and she said, "Oh, I know it!"
She's out of surgery.  It took longer than I expected and I had a moment of heart-stopping panic when someone we haven't seen came out... in a suit.  And then a doctor we didn't know was next to him.  Turns out it was just a change of shift in the surgery waiting area personnel and the new doctor was the one they called in to do the central line.  Everything went just fine though and they are waking her up now.

Gotta run... they are calling us.
This isn't much of an update but I have a lot of nervous energy right now and it gives me something to do.  Turns out the veins in her arm are too small and they couldn't get the picc line in.  So now they are doing a central line.  I'm not 100% sure of the difference and it seems they are nominal.  The outside of it will be on her chest rather than her arm and it will leave a small scar.  Small complication but it's delaying her getting to recovery.
First part of surgery is done and according to her surgeon she did great.  There should be no nerve damage and she tolerated it very well.  She's getting the picc line placed now so hopefully we'll get to see her in about an hour.  Sounds like we will get to come home tomorrow.  Yay!

Sheila told us earlier that when they went back with her she was animated and talking to everyone about Disney.  After they sedated her, her team was amazed with how well she did.  Sheila said they were all commenting on what a brave little girl she is.  It's so true.

Surgery Day

Rachael was just wheeled into surgery.  She was not scared and didn't even seem anxious.  I took pictures and I wish I could publish them now because you can see her smiling and playing with the toys that Miss Sheila brought in for her.  Miss Sheila is a Child Life Specialist and she stays with the children when they go into surgery.  She is the surogate mommy and she does her job well.  Rachael feels very comfortable with her.

We should get updates each hour and I will pass it on.

Wednesday, September 23, 2009

So much for an internal clock.

Today didn't start exactly as planned. Yesterday was exhausting so at 11:00 last night Tom and I decided rather than pack we should go to bed and get up early. Because that's always a good plan.

The idea was to wake at 5:30 so that we could get on the road by 7:30. In hindsight even that was a bit silly as it was going to take us more than two hours to get ourselves and Rachael packed, Marc ready for school, the slovenly cesspool of shame my van cleaned out and the trash emptied from my bathroom. Why empty the trash in my bathroom? Because my mother (hi mom!) is staying in our house to take care of Marc and there are certain things that go into bathroom trash cans that your mother doesn't need to see. So as you can see, even two hours was a lofty goal if we wanted to leave at 7:30.

Marc was the first up this morning. How is it that our son got up before our 5:30 wake time you ask? I'll tell you how. Because we all overslept and it was 7:06. If you're wondering, we didn't make our goal.

The rest of the day went fine though. We obviously were very late but the staff at MDACC are incredibly understanding. Something about dealing with parents of children with cancer all day that makes them very accommodating.

Our first stop was with Miss Tony who is the lucky lady with the job of sticking all the kids who come in with needles. This woman is so wonderful though that the kids still love her. She spends day in and day out putting needles in children and she has a wall of "love notes" from kids lining her office. That is one special lady. Rachael opted to have her IV line put in today so that she wouldn't have to get stuck again for the rest of the time. She was scared as she always is but she is beyond hiding her face in my chest. Now she watches. And let me tell you all... the girl did not even flinch. The second it was over she was laughing and joking and moving onto more interesting things. My five year old is getting very used to needles. Sad but useful I suppose, if she will be stuck weekly for 48 weeks.

After that we got assessed by anesthesiology to make sure she's healthy for surgery and doesn't have loose teeth.  Do you know that if you go for surgery will get asked no less than 17 times if you have loose teeth?  It's like they are trying to give the child a complex.  "No, the tooth fairy STILL has not visited me, thank you for reminding me that I am an underachiever when it comes to tooth loss."

Then we went to the place where they will teach us about the picc line.  I get to take two 1.5 hour long classes in the next two days and then I have to demonstrate that I can do whatever they are going to show me for those three hours.  We haven't even gotten to the tube that will be in her draining her "fluids".  I say it like "fluids" because what I really mean to say is gross stuff with blood in it but "fluids" is better for mixed company.  Rachael and I agree that the whole idea is disgusting so we're not looking forward to it.  Can I just say right now that I am the mother who gets woozy when her kid has a particularly bad skinned knee?  I'm going to be flushing lines and changing dressings and draining "fluids".  We'll keep a phone nearby and make sure the kids know how to contact Daddy in case Mommy passes out.  I spoke with my brother earlier this week (hi Dean!) and he had to do this for his beautiful new wife when she was recovering from surgery and he assures me that I'll get used to it.  He seems to forget that he was the one who wanted to hear the details from mom's work at the nursing home.  Not me.  I didn't want to hear any of it.  But... it's my daughter and I will be able to do this.  We'll just keep Daddy and 911 on speed dial.

After all that it was off to dinner and a movie.  "Cloudy With A Chance Of Meatballs" is really gross in case you are wondering.  I actually did feel a bit nauseated a few times (hi Jason!).  Tom is laying with her now and I'm getting this few minutes to myself.

She's the first patient of the day tomorrow so our arrival time is 5:30.  I'VE ALREADY PROGRAMMED A WAKE UP CALL MOM.  I'm feeling peace.  I'll be glad when it's over but the anxiety of making the decision and then getting here is over.  We are in motion and what will come will come.  It is now in God and her surgeon's hands.  I trust them both.

I'll try to give quick updates tomorrow so check in.  Let me know if you are reading, I may not always respond but I love seeing your comments.  Thank you friends for loving us, and especially Princess Rachael.

Tuesday, September 22, 2009

Your light will shine when all else fades

Tonight five men and women gathered in our home to pray for Rachael and our family. Some of them were the closest of friends. Others we barely know. But in Jesus and in our love for one little child who loves her Heavenly Father we were united. It was some of the most powerful prayer I have ever been privileged to hear and to have it poured over our family will remain with us a long time. Others joined us in spirit and right now I am feeling a deep intimacy with God that has been unmatched in my life.

One of the things about melanoma is that it is silent. It lurks and no one knows why or how but something might trigger it to grow and then it can become a killer. We have been given a prognosis for Rachael that says based on adults – and we know that children tend to do better though we don’t know why – she has a 50-75% chance of being disease-free in 10 years. But we won’t know. It might be inside her.

Inside her.

I’ve been reflecting on that a lot. I’ve mentioned before that it bothers me that she will never be able to donate blood. I think I know why that bugs me so much now. It’s like she is tainted on the inside.

Friends, let me tell you right now…. My daughter has Jesus inside her. He is her friend. Her comfort. Her salvation. And He will consume her inside and that will show on the outside. She has asked me why God has allowed this. She questions but she still has complete faith. Her faith is stronger than mine and she inspires me. I tell her that I don’t know why but I do know that God is good and He loves her.

I pray that our family will be eternally changed for God’s glory through this journey and that He will consume us all from the inside out.

Monday, September 21, 2009

I do reserve the right to change my mind but for now it is made up.

I posted this on the forum that I mentioned yesterday....
Let me start by saying that this is a hard decision... No, it is the hardest. I'm sure you get it.

A few things have factored into what Tom and I have decided. We will go ahead with treatment as planned for Rachael.

1. I could seek 2nd, 3rd and 4th opinions and I would still be in this same place of having to decide because there will not be a consensus.

2. This is MY child and though I know it isn’t “easy” for someone else to make a decision for her, I'm the one who wants her here until she is old more than anyone else. Studies and experts and other survivors may not agree on what is the best course, but the doctor who has met her and looked me in the eye has said that this will give her the BEST SHOT. I spoke with him tonight and he told me that even if it gives her until 2012 until re-occurrence instead of 2011 we will have one more year not only with her, but also one more year for research to catch up with the disease.

3. She is five. Quality over quantity looks different when you are 50, 60, 70 or five. We want quantity and because of her age, she has a better chance of the quality not suffering like it might if she were older.

4. I had peace about the decision to go with the prescribed treatment until I began questioning it. I believe in questioning and researching and learning as much as one can before making any decision - and even more so for one so monumental. Having said that, every ounce of peace I had went away when I started questioning it. After speaking with her doctor, hearing what he had to say and deciding to continue with his recommendation the peace has returned. I can only believe, with hundreds of people praying for us, that this peace is something to be trusted.

Being a parent who believes in co-sleeping, extended breastfeeding, delaying immunizations, avoiding medications and eating whole foods (when the kids would eat them anyway!) the decision to have her lymph nodes removed and then giving her interferon is not one I go into lightly. I wish it were cut and dry but it is not. We have to make the best decision we can and like Catherine said, we can't look back. If we don't do this, I KNOW I will continue to look over my shoulder.

I thank you all for your prayers, well wishes and support.

God Bless.
Catherine Poole (whom I quoted in my last post) is assisting me in obtaining a second opinion.  This is a tricky disease without a lot of absolutes and whichever path we choose will ultimately be the one that WE believe is best for Rachael.  I think we are leaning towards a visit to another institution.  This is in no way because we do not trust MDACC or her doctors there but even Baylor, Mayo and MDACC's doctors could not come to a consensus on what the original mole was before the biopsy.  We want biology to have absolutes but there is still a lot of unknown with melanoma.  Catherine did want to assure me of one thing and asked that I pass it on.  She said, "I support whatever a patient decides is best for them (not just against interferon)."

I am very grateful to her for her willingness to help us in that process.

Sunday, September 20, 2009

Written so Rachael will know we did not approach this lightly.

A week ago I posted a question on the Melanoma International Foundation’s forum asking for experiences with interferon so I could better prepare our family for what is ahead.  One of the strongest voices in that discussion was from Catherine Poole, the President/Founder of the foundation, a melanoma survivor herself and author of Melanoma Prevention, Detection and Treatment.  She strongly objects to the use of interferon.  Here are some excerpts from our conversation.

Catherine Poole wrote:
“MD Anderson is a good place, but if they continue to use Interferon there should be some questions asked. What do they hope to achieve, it only at most extends the time for recurrence in 8%? What will the long term affects be on this child? Will she lose fertility, have problems with depression, etc?  Not only does Mayo clinic not prescribe interferon, neither does SLoan Kettering, UPENN, or Johns Hopkins, all the cream of the crop melanoma centers.  The latest research confirmed that interferon did not extend longevity, and that one month was as effective as one  year.  There are pharmaceutical politics that play into this and this drug has lost it reputation for treatments in other disease groups.  I would DEFINITELY get another opinion from a top notch melanoma center before you proceed.”
I wrote:
“It comes down to this for me... if we did not do it and it comes back, could I forgive myself?  I could not.  I will still question it and speak more with her doctor but ultimately, I think I will have to do it.  The rest is in God's hands.”
“You can't look back on your decision once it is made.  I remember the newscaster, Sam Donaldson and what he said when he made the choice to NOT get interferon. He said he's never looked back on it.  The pros and cons should be weighed.  The overall efficacy of the drug is very low, if it is coming back, it will come back either way, with or without interferon. The drug is only proven to extend the time for recurrence and a short amount of time.  The bottom line is it does not extend survival time. I would certainly have a pediatric oncologist weigh in on it.”
“If what you are saying is true Catherine, then WHY would her oncologist say that he would give his own child this drug if she had what Rachael has?  I cannot imagine he would go that far for a financial kickback.  If it's so clear, then there wouldn't be a question.”
“I have no idea why the oncologist would say that.  I have talked to many specialists in melanoma about your situation and they say the opposite.  No one knows what interferon will do long term to a child. DIdn't your oncologist say it has only been prescribed to 100 children total? We do know the small margin of benefits this drug has and it is not a good trade off for any age. But many docs go by the book, this is an FDA approved drug for stage 3. They don't look outside the box and feel prescribing "something" is important. Watch and wait is equally good without worry of long term side affects. I can tell you for certain that the following top institutions for melanoma treatment do not prescribe interferon:  MAYO Clinic, SLoan Kettering, UPENN and Johns Hopkins.  I would certainly look to another institution for an opinion if I were in your shoes and make sure they were a pediatric oncologist with melanoma specialty.”

She has said that there are a couple doctors willing to do a phone consult with me.  So if they back her up but her oncologist at MDACC still says it is worth going ahead with the treatment, then what?  It’s up to us.  And either choice could have life and death consequences.  And YOU try finding information on the internet about it.  I’ve looked and there is little to none.

This is what one article dated in 2009 about pediatric melanoma has to say about interferon:
“A recent prospective trial of adjuvant interferon treatment was conducted for 15 patients with stage III pediatric melanoma.65 Of these 15 patients, 9 completed the therapy and 2 recurred during therapy. Pediatric patients suffered less toxicity than adults, mainly neutropenia.

Another recent report examined the use of highdose interferon in 6 pediatric melanoma patients with metastatic disease on sentinel lymph node biopsy. Five of 6 underwent complete lymph node dissection followed by high-dose interferon treatment. Four of the 5 completed treatment and were in remission at the completion of the study with a median of 26 months follow-up, and 1 was still receiving treatment. Dose adjustments were required in a significant number of patients: 2 for myelosuppression and 2 for abnormal liver function tests.

In summary, while the impact of this treatment on recurrence and survival remains to be determined, it is feasible to offer interferon to pediatric patients.” (Bold mine)

“Feasible to offer interferon”?  “Feasible”?!  Are they serious?  THAT is what they concluded?  Not to get too terribly boring here – too late, I know – but one definition of feasible is this: “reasonable enough to be believed or accepted”.  Let me be a little clearer here than this article is: I DON’T WANT “REASONABLE ENOUGH”!!  THIS IS MY DAUGHTER AND I WANT ABSOLUTES!

There are no absolutes and so we are left with a very difficult decision.  Many have asked how they can help.  Pray for King Solomon style wisdom here.  Both choices suck but we have to choose one.  Rachael’s future may depend upon our decision.

Friday, September 18, 2009

SPF Blues

I have an appointment today with a counselor.  Just two weeks ago I was so sure that the idea of needing any kind of family counseling was so far out of the realm of possibility that I threw out all the information on different programs offered.  I wasn't being rebellious or stoic or anything.  I just genuinely didn't believe it would be necessary and I was trying to clear some junk out of the paper pile.

This morning was hard.  Ever since Rachael was a baby she has HATED sunscreen.  Sometimes it was barely worth going to the pool for the battle over the sunscreen.  And now I have - HAVE to put it on her every single day.  And she hates it so much and so I wake up most mornings with dread because I know she will cry and I will try to be patient but when the mantra of "NO! I'M COLD! I DON'T LOVE YOU ANYMORE!" starts I have a hard time maintaining my patience.  Some mornings she surprises me and it's not too bad.  This was not one of those mornings.

It exhausts me and I hate it and it makes me wonder what the counselor will think when I am presumably coming to discuss my son but will most likely need to cry about having to put sunscreen on my daughter.

Thursday, September 17, 2009

Of Blueberries and Mashed Potatoes

Rachael has been getting really mad at me lately.  I don't know if it's because she's 5 1/2 or because she is feeling anxiety and the stress of what's going to happen or if I'm just more sensitive.  Everything seems to set her off though and it's ALL MY FAULT.

Tom's parents sent the kids a care package in which they included a little vial for each of them of a precious metal.  Rachael's had gold in it and Marc's had silver.  So she wants to take it to kindergarten to prove to some little girl who did not believe that she was a bonafide millionaire that she really is the owner of gold.   Here was our conversation before school.

"Mommy, what kind of gold is it?"
"It's just gold."
"But what KIIIND?!"
(Realizing she is looking for more and it's going to be ALL MY FAULT for not knowing, I sweetly respond) "It's just gold sweetheart.  Real gold."
Uh.  "I don't know what you want me to say.  It is REAL gold.  There aren't different kinds of gold.  It's just real."
Light bulb goes off in my brain. "Do you mean GENUINE gold?"
"Rachael, do you know what genuine means?"

I'm so glad she doesn't drive yet.  Can you imagine the road rage?  "I KNOW the light turned green but I WAS WAITING FOR A DIFFERENT SHADE OF GREEN YOU IDIOT NOW STOP HONKING YOUR HORN AT ME!!"

Ahhh.  Typing in all caps can feel really good sometimes.

So tonight she was mad because I found every stuffed animal she owns except for the tiny little puppy she got three years ago in a Happy Meal and left in the vortex of slovenly shame my van and I JUST DON'T UNDERSTAND how much she needs it and so she's going ignore me and then she screams like an abandoned piglet (think loud and annoying) when I finally walk away.  So I go out and breathe deep and then go back in and sit next to her.  We had a lovely touching conversation that ended in giggles and will hopefully help.  Bottom line, when she (or I) needs a reminder to speak kindly we will use the code words "blueberries" or "mashed potatoes".  We like "blueberry words".  They make us happy and are tasty in our ears.  But "mashed potato words" are yucky and we never want to hear them again.  It will be a reminder and not a rebuke and hopefully will restore our friendship.  And will do nothing for getting her to eat her mashed potatoes.

Tuesday, September 15, 2009

Won't you say you love me too?

Tom and I are going out on a date tonight because we have a huge reason to celebrate. He is starting his new job tomorrow! I don't even want to begin to recount all that has brought us to this point since he retired from the Army but let's just say the timing couldn't be more perfect. We should be jumping up and down in little circles doing the Snoopy dance and then putting the kids to bed early *wink wink* but it's hard right now to feel celebratory. Having said that, we are going on a date and I'm determined to have fun.

Last night I could not sleep. I don't think I slept an hour but I have a strange amount of energy. I did housework today which actually felt really good. I was thinking while laying there awake that the hardest question to answer right now is "How are you?" It's tied with "How's Rachael?" I've not been doing the "I'm fine" answer because that seems so ridiculous but it's becoming exhausting trying to actually figure out how I am doing. I really have no idea how I'm doing but for right now, right this moment, I'm doing fine. So, if I say I'm good, or I'm fine it's because I'm really working hard at being that way. I'm not lying or being fake. I just don't know any other way to answer because I truly don't know.

I am very much looking forward to getting to a point where we are simply continuing our lives. It's going to be different now but we'll eventually find our equilibrium again.

Actually, I think Rachael  really is doing fine.  If you consider playing "how obnoxious of a fart noise can I make?" with her brother from sun-up until sun-down to be fine.  Personally I find it a bit demented but when you have a Daddy who still thinks "pull my finger" is hilarious I guess it's to be expected.  She is aware of what's going on but she feels good and I think it's hard for her to viusalize the future.  She can sit next to me on that bench.  I think she would be perfectly happy to play ostrich and keep her head in the sand.  That makes it hard for me to know how much to prepare her.  I think I should just let her be silly and normal for now.

Besides, singing the Barney theme song at the top of our lungs while walking home from her first Daisy meeting is way more fun and better therapy than any amount of talking about our fears for the future.

"I love you."
"I love you more."
"I love you most!"
"I love you MORE than most!"

We'll serve it with refried beans and stewed tomatoes.

I need to journal.  It’s therapeutic and I like that I have this feeling of doing something that will help me in the future… journaling for posterity if you will.  But my mind is so muddled and so many of my thoughts are incredibly ugly.  Do I really want to record all that?  I’m holding back a lot and I think that’s a good thing because I don’t want my children to look back at this one day and hate me for some of my thoughts, especially because I don’t know how temporary many of my feelings are right now.

I have a few appointments coming up that I made today.  I have an appointment for counseling for myself because I’m concerned about Marc.  I wanted to make the appointment for him but they said it has to be me first.  That’s probably for the best.  The center I’m going to also gave me the name of a child psychologist and they recommend I go ahead and get a diagnosis for Marc.  I made that appointment as well.  I believe Marc has a mild form of Asperger’s but we’ve never had him diagnosed because we’ve dealt with it through diet for the past 5 years and he’s done very well with that.  We’ve never had him medicated as we just didn’t feel it was necessary but now I’m questioning if it might help us get through this time.  Not that he has changed but I am feeling this incredible lack of patience with him and maybe a little extra help for right now would be okay.  I don’t know.  It’s like a freaking impossible decision and Tom and I are not on the same page so right now so we’ll just go one step at a time and I’ll go to this counseling and we’ll try to get him diagnosed.

Pray for my son.  Pray that I can love him the way he needs to be loved because that is really hard for me right now.  A good friend of mine said something to me that I have been repeating to myself and others for two days now.  She said, “Danielle, you should feel sorry for him because he cannot feel something that he should be feeling.”  That’s why I think we need help.  He cannot feel things that he SHOULD feel.  And it makes me feel other things than compassion right now.  So yeah, we need some help.

If anyone local feels led to pour into him a little, I will take you up on any offer you suggest.

I spoke with another mom tonight with a little girl who has stage 3b melanoma.  Her daughter is 6 months past interferon and we talked for about two hours.  That was so good for me and I am incredibly grateful to her and her willingness to open up and share with me.  I could hear her family in the background the whole time and she just stayed with me.  It was a sacrifice for her and words aren’t enough to express my gratitude.  I don’t like the unknown but I also don’t want to be unnecessarily scared witless so though google is bad, talking to someone who can give me the lowdown on the ugly truth of this disease is very good.

I don’t know why but this stuck out to me.  People who have melanoma can never be blood donors.  What a minor thing but it’s just like a mini kick in the pants.  I keep wanting to go back to “this is no big deal, we’re just being preventative.  Careful, if you will”, but no… this is cancer.  Cancer.  I keep thinking that she has like, the pretend cancer.  The almost cancer.  The not really cancer.  The no big deal cancer.  The past few days the truth that she has the capital C Cancer has been sinking in and the more it does that the more muddled my brain gets.

I keep clinging to the “you will have grandchildren through her” speech but I’m in this limbo stage of “Okay then, IS IT a big deal or IS IT NOT?”  Would ignorant bliss be a better state to stay in where I can laugh and joke and not be scared or do I need to be hit with a healthy dose of realism and deal with it so I can move on?
Her oncologist is pretty much the most cheerful guy I’ve ever met.  Is he cheerful with everyone or is he cheerful because finally he has a cancer patient he can feel confident about?  I told Tom tonight that I think I would do better with a doctor with horrible bedside manner who was telling me my daughter would grow old because I would trust it more.  I think because the way we came into this was so lackadaisical, I’m having a hard time now trusting the “good news” that she will be “just fine”.

If she’s going to be “just fine” then why are we putting her on a medicine that will make her sick for a year?  If she's going to be "just fine" then why does she have a three inch scar that she called "evil" tonight? If she’s going to be “just fine” then why are we at MD Freaking Anderson?  Or is it BECAUSE of the interferon and the surgeries and MD Anderson that she will be “just fine”?  Or are people just trying not to overwhelm me and keep me in high spirits that they won’t tell me the truth that we HOPE she will be “just fine” but really, it’s possible she won’t?

I think I am going to request to see another doctor.  If two doctors tell me she will be “just fine” then maybe I can concentrate enough again to actually buy groceries that make sense together.  I joked on facebook today that we were going to have Peanut Butter Bisquick Pasta for dinner.  With the hodgepodge of groceries I brought home though I’m not sure how far from the truth that is.

Are worry and being scared the same thing?  I don’t want to worry but I am scared.

Sunday, September 13, 2009

Bippity Boppity Boo

Last week, if you consider today the end of this week, the kids and I were in Disney. It honestly seems like a lifetime ago and I'm so glad we went. My friend asked me what the best part was and it was hard to pin down one best part but seeing the kids’ reactions to the big iconic structures at Disney was so fun. The first time we walked around the corner of Main Street, USA and there was Cinderella's Castle they were awestruck.

That night when we watched the fireworks show Marc in particular was really blown away. At the end he said, “That was so beautiful!” He’s not one to effuse so it was high praise.

There were so many wonderful little moments. The first actual ride we went on was “It’s a Small World” and Marc blurts, “This is SO CREATIVE!” Finding out exactly how much I can sleep deprive and starve my children and still manage to have an absolute blast as soon as we get to the front of the line and we’re all smiling from ear to ear knowing it’s almost our turn for something really special.

Not being sure if going on the “orange side” of Mission: Space is a good idea when they tell us 15 times that we might get sick and then screaming in utter terror and joy as it takes off (and not getting sick but sure we don’t want to do it again!). Being so hungry and hot and cranky and finally getting seated in the Tusker House at Animal Kingdom and sharing that amazing meal together for TWO HOURS. Two hours eating. With two small kids at Disney. It was so wonderful that I took about 15 “beauty shots” of the food just to make Tom jealous. People there were worried for my marriage - it was that good and therefore that mean.


We went to a BBQ and Rachael danced the night away with Goofy. He was twirling her and doing air guitar with her and she had so stinking much fun. Marc found a friend in a little boy from England and they spent the evening sharing fart jokes. Pure, smelly, heaven.


It was beyond fun.

Focusing on them and eating all our meals together and suffering through long bus rides and ridiculously long hikes in the rain so we could eat and hearing their laughter as they experienced all of it and just being with them. It was probably the best week I have ever spent with my children. And it was totally worth the embarrassment of actually resorting to wearing socks with my crocs because the blisters were so bad

I can’t wait to go back.


Big girls DO cry.

We first found out that Rachael's little mole might be a bigger deal than we were initially told through a phone call from her local doctor, Dr. D.  He called us at home in the evening and asked if Tom could get on the other line.  Dr. D said that the tissue had been sent to Baylor and they were forwarding it to Mayo and that we should start to prepare for further treatment.  We were concerned of course, but he was very reassuring and told us that this was most likely just extra vigilance and not something to actually be worried about.  So, I didn’t worry.

He recommended at that time that we go to Houston because they have the absolute best cancer center in the world but he warned us that it could be very scary to walk into a place like Texas Children’s Hospital or MD Anderson.  Honestly, I remember thinking, “It’s a hospital.  There will be sick people.  I think I would be prepared for that.”  But the reality of walking into MD Anderson for the first time was very different than any other hospital I’d ever been to.  There weren’t just people with hangnails or broken legs.  There were people with no hair and sunken cheekbones and bruises all over their bodies.  There were children who didn’t have the energy or internal body heat to withstand getting out of their layers of blankets to play in the state of the art playroom.  There was a little girl Rachael’s age who was puffy with who knows what medicine and a little bit of fuzz on her head and eyes that couldn’t quite focus.

And then there was my beautiful, healthy looking daughter with a full head of long curly hair who was skipping around with joy at all the wonderful toys and I just thought, “We don’t belong here.”  Not only did I feel like we didn’t belong but I felt incredibly guilty that she was being treated with the same concern and compassion and I was being met with the same absolute love and sympathy as all those other moms who clearly had babies in much more dire situations.

Going to MD Anderson is truly like entering a family who loves you and wants to show their love for you in every way.  I felt embraced.  After her first visit, one of the Child Life Specialists was chatting with Rachael while I was waiting on a piece of paperwork and not knowing who that woman was talking to my daughter I asked the receptionist.  She said, “Oh, she just talks to the kids about their day and what they’ve been through and sees if they need to talk.”  I wanted to run over there and say, “Please!  Go talk to someone who needs you!  We’re okay!  We don’t deserve all this compassion!”

It’s not like Rachael or I don’t deserve compassion.  Everyone does.  But I’d been told that my child’s prognosis was most likely fantastic and after a little surgery we’d probably just need some follow-ups.  It was just a weird feeling.  Like I needed to apologize for taking up their precious time when clearly my daughter wasn’t like those other kids.

And even now that her diagnosis is worse than we thought it would be and her treatment will be longer term we still believe that she will grow old and – though this is a little thing in the grand scheme, for her it is the biggest thing – she will never lose her hair.  So I can still look around at all these other kids and feel like I shouldn’t be anything but grateful.  And I AM grateful.  I am so very grateful that we found it early and that we have amazing treatment options and that my child will likely survive.

But today… just for a little bit… I want to say that this sucks.  This is really hard.  I don’t want her to have more surgery and more scars and tubes and needle sticks and recovery and risk of chronic swelling and pain and medicine that will probably make her sick for a year and the extra expenses and this feeling of having absolutely ZERO patience for my son’s lack of compassion and my husband’s normal communication mode of not talking much and not knowing for sure that she won’t end up with tumors in her lungs and bones and brain.

We are so very grateful that it’s not worse and all the things above are things we can live with and so very many people would give their very own lives to only have what we have in front of us but just for today I cried and I cried a lot because it just sucks.

Saturday, September 12, 2009

Spitzoids are not those things you shot out of a straw in the 3rd grade.

I've blogged before but wasn't very good at it. I think I had one follower and she gave up on me after I didn't update for a year. So honestly, I can't promise I'll be any better at this blog but I think a lot of people would like information and I'm hearing that hundreds of people are praying for us and it's overwhelming in a really incredible and humbling way.

On July 14th I took Rachael to see her doctor because she had a little mole on her left arm that looked odd to me. Not knowing anything about moles I didn't think much of it, especially because Tom has about a billion of them and I just thought, "poor girl has her daddy's skin". It had been there maybe 2 months but one night she said, "It kinda hurts," and that seemed really strange. So we're there in her doctor's office and I'm all ready to hear, "Mom. It's a mole. Deal with it." Instead I hear..... crickets. Then.... "hmmmm." Then he gets out his super special goggles with magnifying glasses and lights and straps it on his head and goes, "No, I don't like this at all. This is coming off today."

And that's just what he did. He took it off. In his office with a bit of numbing juice and a scalpel. I watched the whole thing. And I didn't pass out! Rachael whimpered during the shot and then was completely stoic. She is so brave. I asked her doctor if he was worried and he said, "No. I have already prayed over her. I will pray again when I get home and I am not worried." That was good enough for me so I wasn't worried either.

This "no big deal" ended up being a little tumor that caused quite a stir for its rare-ness. Baylor, Mayo and MD Anderson all had a go at discussing it and though they didn't agree on exactly what it is, they agreed more treatment was necessary. The term they initially used to describe it which, if you were to google it would probably confuse you - or maybe it's just my brain that cannot seem to compute the thing - is "spitzoid". Here's one of the most concise answers I've found for what exactly a "spitzoid" is.  From the article:

"Spitz melanomas are completely benign (non cancerous). If left alone they will cause no harm but because they are difficult to tell from malignant (cancerous) melanomas they are often removed for examination under the microscope, to confirm the diagnosis. Once removed the problem is completely cured and will not come back.
Very rarely a cancerous (malignant) melanoma can look like a Spitz melanoma. When this happens the tumour is sometimes called a Spitzoid melanoma. Spitzoid melanomas behave like other malignant melanomas."
 It was pretty easy to cling to "completely benign" and "very rarely".  Actually it was terms like that that made the treatment all three medical establishments were recommending seem quite invasive.  They wanted to do a "wide local excision" and a "biopsy of the sentinel lymph node".  What this means is that they wanted to cut a large chunk out of her arm where her local doctor removed the original tumor to make sure there were no more cells hanging around looking to start trouble and they wanted to take one or two of her lymph nodes out so they could cut it up and make sure the cells hadn't travelled.  Which would make it malignant.  The "very rare" thing.  And that would be bad.

They did the surgery and I was really shocked out of all denial when I saw her wound.  It's hard to see perspective here but it's a little over 3 inches long.

Plus she has a small scar under her armpit where they removed 3 lymph nodes.  But as ugly and shocking as that was, I wasn't worried.  I mean, I was concerned but I was not spending a lot of time fretting.  And after they did the surgery I didn't hear back from the doctor like I thought I would the following week so started believing it was fine.  We went to a long planned trip to Disney World (I'll post about that at some point) and other than being VERY diligent with sunscreen and hats and shade-seeking, we put it out of our minds.

Yesterday we had an appointment scheduled for stitches removal.  I was very confident that they were going to give us the "all clear" and we'd schedule a follow-up.  When the doctor came in he was all smiles and I said, "So, do we have news?" and he said, "As a matter of fact we do."  Still all smiles so I'm thinking, "Phew!  I knew it was fine."  Then he turns to Rachael and says, "Rachael, mommy and the doctor have to do some really boring talking.  Would you like to go to the playroom where it will be more fun?"

He was being cheerful and upbeat for her.  Mind started reeling.

We take her to the playroom, he puts his arm around my shoulder and says, "I can count on one hand the amount of times I have sent a child out so I could talk to the parent alone."  I said, "This isn't good news." And he said, "No.  It isn't."

I was alone and I didn't want to break down.  And the not breaking down was making me really naseous.  And then my brain sorta went numb and I went into "get information" mode.

Rachael has "at least" stage 3 melanoma.  They found cells in the lymph nodes.  So that sounds really horrible and if one were to spend a lot of time googling, one might end up in a puddle quivering under her computer table but one has studiously avoided google so one will simply tell what the doctors said.  Which is much more encouraging than I understand google is.  Google does not give hugs and say, "You will be okay".  Google is like that mean woman at work who actually tells you that you do look fat because you were stupid enough to ask.  The best way to deal with her is avoid her and certainly don't ask her questions you don't want to hear the answers to.

Her oncologist believes she will grow old and give me grandbabies. He actually said that.  For reasons that doctors and researchers do not know, when children are under 10 years old and they are diagnosed with the ultra-scary "malignant melanoma", their little bodies seem to fight and beat it.  If she were over 10 and they found melanoma in her lymphatic system their enthusiasm would be a bit more cautious but the children they have studied and followed who got this around the same age as Rachael are all still alive.  She is in a VERY tiny group.  Well under 100 children but they have all gone through the treatment that they are recommending for Rachael and they are all still here.  So that news allows me to breathe and continue to function and even laugh.  The other good news is that none of the treatment involves chemo so she will not lose her hair.  That makes me almost cry with gratefulness.

What is to come is another surgery when they will remove all the lymph nodes under her left arm.  This will happen on September 24th.  We will head back to MD Anderson on the 23rd for pre-surgery appointments and she will have an overnight stay after the surgery.  Her surgeon has warned me that pain management will be tougher this time.  She will also have a tube inserted for drainage and on her other arm she will have a picc line inserted at that time.  There are a few possible complications and the one I am most concerned about is that her body will not adjust the flow of drainage to go to other lymph nodes properly and that will result in chronic, painful edema.  I plan to be on my knees frequently asking God to work in her body so she doesn't have to endure that.  The surgeon says it can be lifelong.  The chance is small but friends, we have already learned the "very rarely" does not mean "won't happen".

After she has healed completely from the surgery we will begin interferon.  In an attempt to find a good link for interferon and learn more about it myself I ended up googling.  This was not a good idea.

I love her so much.  She is so beautiful and full of energy and life and potential.  I long to see what kind of person she will become and cannot imagine having it cut short.  I know God gives us strength but it comes from a place I don't possess yet.  For me, that strength is unimaginable.

Deep breath.

Okay... so what the doctor told me is that the first four weeks the interferon will be given through an iv using the picc line on a daily basis and will likely make her quite sick.  After that she will have weekly injections that we can do at home (again through the picc line) and those will last 48 weeks.  The next few years will involve lots of tests and pricks and scans and trips to Houston.

She's so innocent and little.  And she has an unbelievable joy of life.  She is so brave and she has utter trust and complete love for Jesus.  Right now she is struggling though with the question of why God didn't answer her prayers in the way she wanted.  We talk about it and I explain the best I can but it's so hard.  I tell her it's okay to ask Him.  I sure do.  Ultimately though, I know He has a plan for her and that's what I tell her.  That she's special.  And that no matter what He loves her.  And that despite anything hard we go through, this truth remains... God is good.

But she's going to be sick I'm afraid.  And she's going to hurt.  And my heart is breaking.