Thursday, July 22, 2010

I've never been here before and I'm ready to leave.

I want a way to describe how I've been feeling the past couple weeks.  I want a word, or an expression that really captures how it all seems to be growing and culminating in my heart.  But I don't want to seem dramatic so a phrase like "I'm going into a tailspin," doesn't seem quite right but I am feeling very raw.  The sorrow piling around friends of mine, and little stresses in my own life are really all catching up to me.

This started a little over a month ago while we were on a two week vacation in Maryland.  Rachael ran a fever the whole first week and was on a Motrin/Tylenol rotation around the clock.  After the 7th day I emailed Dr. H. and told him I was getting concerned.  He called me and told me it was not that out of the ordinary and with no other symptoms it was probably a normal interferon thing.  The next day Rachael got a headache.

It came on so quick and it was extremely intense and something weird happened in my brain.  I couldn't disengage.  It was the most scared I have ever been and I couldn't think or be terribly rational.  I "know" a couple people online who have lost someone they love to melanoma and watching her suffer with an inexplicable head pain I just thought, "This is what end stage would look like."  For the first time, I could imagine losing her and I just cried.

After talking to her team in Houston I decided to take her to an emergency room in Maryland for some blood work.  I like to complain about hospitals that are not "ours" but this place was fantastic!  I'm not sure if it was the look on my face coming in, her age and that I carried her in on a 100 degree day wrapped in a blanket or that I wrote "oncology patient" as part of her history but we have never been triaged so  quickly.  We got set up in a private room and as fast as her symptoms appeared.... they disappeared.  So here I am with a team of very concerned doctors and a daughter who is being her normal, charming, goofy self!  I wanted to go home.  Shockingly, they wouldn't let me.

They said they needed to to do a CT scan and of course I know what they are thinking.  Brain metastases.  I KNEW she did not have a brain tumor.  She had just had a PET scan done six-weeks earlier and it was clear and I just knew it was not that.  And one would think I would be happy for that test to rule anything out but I did not want her to have it.  It was like I knew it couldn't be that, but I didn't want to be proven wrong.  I didn't want to know.

While we're waiting for results a group of five people came in and I'm checking them out and realize they are all there to get an IV in her.  One person's job was to hold her arm down and she's looking like, "What is all this?!" and I'm all, "Ya'll can just give her some space, she's fine with needle sticks."  She realizes what they are doing at that point and goes, "Yeah.  Can we just get this over with?"  Cracked the whole room up!  So they tell her to "look away" and I say, "She likes to look," and they try hard to not roll their eyes at me.  She watches and chats and laughs and when the needle goes in she says, "I didn't even feel that one."  One of the nurses says, "We just got beat up by a four-year old.  Just wanted to be prepared."

The results from all her tests came back and she was diagnosed with.... drum roll.... "Acute Sinusitis."

Yes, yes, ladies and gentlemen.  My daughter - using cutting edge brain imaging technology and blood work - was diagnosed with a sinus infection.  After I nearly burst out in tears in relief I felt a bit dumb.  Until my husband reminded me on the phone later, "Honey, she's a cancer patient."

Yeah.  Yeah.  She is that.

It's part of the "new normal" I talked about in my last post.  Great medical care is wonderful and I suppose an advantage to have but a year ago, with her symptoms, I don't even know if I would have taken her in.  Doubtful.  And I seriously doubt she would have been given a CT scan or had an IV placed.  But a year ago doctors' minds would not have immediately jumped to brain tumors either.  It is hard to explain how much I hate that.  I just wanted to grab her and run home and I kept saying while we were there, "I'm sure it's nothing.  I wouldn't even have brought her in if her symptoms had gone away just 30 minutes earlier.  She's totally fine."  I was right and I'm so glad but they were worried.  And I like it when it's the other way around.

This same week one of my friends at the RMH lost her son.  Her pain is ... overwhelming.  And people kept facebooking her things like, "He's in a better place."  I found myself SO ANGRY for her.  How DARE anyone tell a mother that ANYWHERE but HER ARMS is a "better place".  Of course heaven is a better place but is that where you want YOUR child?  Someone even told her, "God needed Him more."  Fuck that!  SHE needed him.  I'm not angry at God and she's not either but these people make me want to hate Him.  One guy said to her at the funeral, "You must be so relieved."  It took everything in her to not punch him.  Not sure I would have tried so hard.

My closest friend in Houston is preparing for her daughter's brain surgery in a couple weeks.  This mama does not worry.  She has total and complete faith that God will heal her daughter but brain surgery.  She's fighting it, but she's scared and I hurt for her.

One of the families we were close to during our month in Houston has a 10-year old boy with a type of brain cancer.  In April he was released with no evidence of any cancer cells in his body.  His parents celebrated and they enjoyed two wonderful months getting back to "normal".  They went in for a routine check-up.  Much like Rachael goes in for routine check-ups and not only is the cancer back, it's growing at an alarmingly rapid rate, it has spread to his spinal column and is inoperable.

In a matter of weeks they went from "cancer-free" to praying for a miracle.  Because that is what it will take.  A medically unexplainable miracle and do we believe that can happen?  Yeah.  Are we praying it will happen?  Of course.  But when the only thing standing between your child and death is a miracle... I'm just having a hard time with it.

So all this to say, when I started noticing that one of Marc's pupils was a bit larger than the other I grew a little obsessive.  And when I took him to the doctor yesterday (the same wonderful doctor who first removed Rachael's mole and immediately suspected it might be something more), Dr. D. said, "It's probably nothing," and "I have a good feeling about this".  But when he pulled up a medical website listing Marc's symptoms, one of the things it said on that screen is "Need to rule out neuroblastoma" and Dr. D saw me start to panic.

I am NOT a "panicker".  I DON'T worry.  I'm just not that mother who rushes her kids to the doctor every time they cough but after the month we have had I found myself fighting tears when I read those words.  Dr. D. continuously reassured me but we do have two MRI's scheduled "just to rule anything out" on Friday and Monday.  It's nothing.  I'm sure.

Today Amanda called me.  She's watching my kids this summer and Marc had a bad headache.  He was crying and in a lot of pain and that panic rose up again.  I texted Dr. D. and said, "Should I take him to the ER?" and he called back and continued to reassure me.  But on the way home I took Marc to the eye doctor.  He said that yes, he does have one constricted pupil but the way they react to light is the same - which means it's within the realm of normal, his "opto-map" showed nothing but health and Marc has 20/20 vision.  He was VERY thorough and compassionate and I might just have to embrace the "worried mother" label for awhile.

Amanda says I have to give myself permission to be concerned.  I don't know why it is so hard for me to do that.  It just seems so dramatic and unnecessary to look at a child with a headache and immediately start thinking about cancer but God, if I haven't become that mother.

It feels like weakness.

Lately though, I feel emotionally weak.  I cry easily.  I have a hard time concentrating.  I'm scared.  And I really hate all those feelings.


  1. I'm sorry. You're not weak - you are just going through things that are that hard and that have brought you close to people going through the hardest thing there is; being scared and upset is what anyone would be. I'm sorry.

  2. In the transplant world they call it the transplant roller coaster, because things can change so very fast and without much notice. I have so many memories of the horrific ride and the countless times that i said or rather yelled "I WANT OFF OF THIS DAMN ROLLER COASTER". Oh............and I say with every fiber of my being how much I would give anything to jump back on the ride. I know what you are speaking about with the not liking to be the mom that worries over every little thing with the kids. However, under the circumstances just allow yourself to feel what you feel. If it is worry, or fear, or panic even, for these are just part of the new role you are in. When our children face such huge things in their life, it changes our role as parents. In time, I have full confidence that you will find a new place between the worry and the place you once were, but no parent can ever go back to the pre- roller coaster ride place, for the ride becomes implanted in us forever. My tears are like an over flowing fountain these days, I cry for families we both know and kids we both love and yes I continue to question God because I do not understand at all. So, although it may sound very strange, praise God every day that you still have the right and privilege to worry over your children. I PROMISE WITH ALL THAT I AM, to be able to worry is such a precious gift. Our ride is over but the effects of it will last forever in my heart.

  3. Oh darlin, I am so sorry. You know what, TAKE that label and embrace it because you have so many others to wear as well. "Strong woman~there for anyone who needs her. Passionate Mom~who will make whatever their child should eat, from scratch, no matter what it takes. Devoted Wife~encourages and supports her husband in any and all job opportunities. Amazing Christian~will share the gospel with you ...or anyone who may knock on your door.

    I adore you, I admire you.

    When I did my walk to Emmaus my final thought, what I shared on stage was... "I want the strength to be weak. The strength to reach out to others and let them help me, come alongside me, and support me". Allow others to do that for you~it blesses them as well. When you let others help you, it gives them the opportunity to steward to you and show God's love~and that's a good thing.


  4. Hiya New Friend,

    I am so glad I met you and really glad to get to read about your amazing battle with evil, effing cancer through this blog. I have plenty of my own struggles, including losing my husband's beloved mother to pancreatic cancer very suddenly a little over a year ago, but I absolutely cannot imagine dealing with a trauma such as this with my own child.

    Thank you for putting a face to the question, "Why does God let bad things happen?" As a Christian, I HATE this question. How am I supposed to answer something I barely understand myself? Better yet, how on earth am I supposed to offer justfication for the works of God? HELLOOOO, I'm just a regular ol' house wife and mother; What do I know?

    Well, I know people like you, and that's a good enough answer for me. I know people like you wh'ove experienced intolerable hardships most of us can't imagine in our most heinous nightmares. I know people like you who, despite all that unimaginable crappola, live in faith and still trust God, who we do not understand.
    Bravo, my friend! At least you've maintained your integrity by being honest about all this, as opposed to putting on the "I am strong enough to handle this no prob" face.

    I do not want to have a sick child. I do not want to struggle with daily fear of cancer. I do not want to send my little angels to "a better place". But, I do want to handle it as you have if, God forbid, it is a test that I am given. Thanks, girl! Let's have another mojito soon. :)

  5. You are truly amazing!

  6. Danielle,

    I am sorry there are those who would judge you as you experience all of this - NO ONE can possibly understand your situation unless they are in it with you!! You are indeed a strong woman and you are entitled to be more cautious than the rest of us because you have been through so much. I am glad her sinus thing was nothing more than that, I am glad his pupils were in the range of normal, but even if they weren't YOU ALONE can determine the way you will respond!!!

    I am praying for you all!


  7. This isn't related to your post but there's a woman on this site whose daughter was diagnosed, she is 9 yrs old. God Bless you guys!

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