Tuesday, March 20, 2012


Scarlett has been off chemo for almost a month now.  She is feeling better, has more energy, is making great developmental strides and is really exhibiting her little personality.  It is wonderful! 

However, there is a flip side to being off treatment that is keeping me from fully enjoying the freedom.  We have not seen a doctor in more than two weeks.  For most people, that would be a good thing, but for me, it feels like we are standing on the edge of a cliff all alone.  We have seen a doctor nearly every week since Scarlett was born, and at least once, sometime daily, every single week since she was diagnosed at 9 weeks old.  I have never parented without doctors.  I have never not known her weight for more than a week, or, for that matter, not known her whole CBC blood panel.  For the first time in 15 months, she is not getting any medications.  As much as I would like to say I am happy to be free of the constant doctor supervision, THAT is what has been our normal.  THIS feels strange.

Logically, I know that a doctor seeing her will not tell us if there has been any significant tumor growth or shunt changes.  I know that the tumor is not more likely to grow back now that she is off chemo. The doctors are really just checking her over, watching for long-term effects and changes, and nothing has been significantly different for months.  I even know what to look for - neurological changes, rashes, bumps, bruises, weakness - if something were really wrong.  But there has been a security level in having a professional see her so frequently that I grew to rely on, and without them, I find myself second guessing myself, worrying and counting the days until we can see them again. 

An example:  Last Wednesday, as we were taking off her jacket at therapy, I noticed a rash that stretched from her forehead to her ear.  It didn't seem to be bothering her, she had no fever, but it was new and strange.  Her therapist, following protocol, asked us to take her home since we didn't know what it was, and we agreed, not wanting to get anyone else sick.  Knowing her immune system is still significantly weakened from chemo, I was concerned.  As soon as we got to the car, I began making phone calls, trying to figure out if we should take her to the hospital clinic, to the new pediatrician, apply hydrocortisone, give Benadryl or just wait and see.  It took ALL DAY to hear back.  We called again, e-mailed and called someone else.  By the time someone got back to us, the rash was gone.  We used to get called back almost immediately for less serious stuff.  There are other patients that need their attention, and I want them to get what they need.  But would they have called back sooner if it was something more?  

I know Scarlett is still a priority to them, and I would have done more if that rash had gotten any worse.  But it felt so strange to NOT have the doctors panic, to NOT have an emergency visit and NOT to have to worry (which I did anyway.)  I think that over time, this feeling will fade.  The further out we get, the easier it will be.  We will still stress at MRI time, worry if anything seems different, and we will still watch her like hawks.  One thing I have learned in the whole experience is that I have pretty good instincts when it comes to Scarlett's health, and following those instincts usually leads us down the right path.  I just have to learn to trust myself to let things be good, to let go of the fear of it all coming back again and let her be her.


Kathie P. said...

Brandi, how insightful your comments are about how your "normal" differs from the rest of ours. My son is just 2 days older than Scarlett and I've been following her story from the beginning. Around here, we get geared up for doctor's appointments. We wait in anticipation with our list of questions we have for the doctor. Reading your blog reminds me that not everyone has lives similar to ours. It makes me thankful every day for our healthy baby boy. It also helps keeps our small issues in check. Thank you so much for sharing your story. You write so well!!

Unknown said...

You are adjusting to your new normal. I was told during my own treatment for cancer that the hardest emotional time comes after treatment ends. It is for the exact reasons you describe as well as this sudden void in your life. It may be a good void in reality, but it is still a void, leaving room and time for the emotional fallout of the last year+. Now it is time to remember you need support too. If you don't have someone already, look into counseling for yourself. As much as Scarlett physically went through this experience, you were the one to bear the emotional and psychological weight of it. That is serious stuff.

Mrs.Andrews-Next Adventure Travel Co said...

*hugs* it will get easier as this becomes normal but it'll probably take some months before the instant panic stops hitting so easily. it's WONDERFUL that she doesn't have to be a panic patient anymore but I totally understand the "on a cliff" feeling. Hang in there, enjoy all the new normals being developed and know that if something were really wrong they would be there in a heartbeat.

Jodi Steele said...

That totally makes sense. You have been dealing with MANY struggles, decisions, and roller coasters but went through all of them with medical staff. Now you're learning how to battle parenting in a whole new way. Life always keeps us on our toes, doesn't it? :) Good luck to you in this new adventure!