Thursday, January 20, 2011

On Hold

Well, Scarlett has decided she doesn't want to move up quite yet.  She has thrown us two curveballs that have paused the move. 

She has developed a rash.  It started out on her leg where she had a band-aid.  It has now spread all over her legs, face, chest and arm.  We're hoping it's just an allergic reaction to something.  She got a bath and some lotion to help calm her skin, and may give her some Benadryl.  I had been pointing out this rash for two days, and they told me it was maybe eczema.  It's not too serious, but we're watching it closely.

In addition, her liver is enlarged.  The resident doctor told us this like it is no big deal.  He said he's not really worried, just curious.  Curious enough to have an x-ray that didn't show what he expected.  Curious enough to order an ultrasound for this morning.  Curious...

Despite these, she is eating like a champ.  No more NJ feeds; everything is by mouth now as long as she keeps up.  She is so skinny.  I'm not sure what her current weight is exactly, but her ribs are sticking out and her skin feels a little saggy.  She was always very small, in the 10th percentile of weight for age and below the chart on weight for length.  Now that she doesn't have to be starved for so many procedures and recovery, she should gain more...until chemo, where she may have trouble gaining.  But weight it not our biggest concern right now.

I had a moment where I realized that, in some unfair twist of horror, brain cancer might not be Scarlett's only challenge to overcome here.  All the other, more normal things we were concerned about before her tumor was discovered are still lingering.  Like allergies; I was worried she might be allergic to something when we took her to that last well check, but we never got to it.  The enlarged liver made me worry that there was something else going on, separate from the tumor.

I think that it would be only fair if brain cancer was the only serious medical condition she has to face.  She should get some kind of karmic pass for no future illnesses.  She deserves it. Please, please, nothing else.  I can't take it.

We've got a busy day today: another MRI (#7), liver ultrasound and hopefully a move.  Tomorrow, Auntie Lindi is babysitting while Chris and I go back to Stanford to meet with the neuro-oncologist about the plan for the next few weeks.  It's going to be an intense meeting, but we are actually a little excited to go somewhere outside the hospital together...it's a sad excuse for a date, but we'll take it.

30 comments:

Anonymous said...

Praying that all the tests come back normal today and that she gets to move up! You have such a strong little lady!!!

ACE said...

Oh baby Scarlett how i wish i could just make this all go away for you and your mommy and daddy! Lets pray that the ultrasound really does show it is "no big deal". I hope you get to move soon and hope the mtg tomm goes well or at least as well as it can go for something like this. My thoughts and prayers are with you always. Love to all of you! I am glad you two are getting out to breathe fresh air together no its no great but at least you two have each other to lean on and you need some away time to regroup. Stay strong mommy and daddy we are all rooting for you!

Anonymous said...

You continue to be in my thoughts each day. thank you for taking the time to update us and to share what is happening each step of the way. What a little fighter Scarlett is!
--K. Reich, Burlington, NC

Anonymous said...

I am praying for you. It is often one step forward and two steps back in a hospital setting. Scarlett is a fighter and so are you. Keep the faith.

Anonymous said...

That Scarlett sure is a fighter! What a little wonder! Lots of prayers are being sent your way. Stay strong!

Kimberly said...

My family and I are praying.

Anonymous said...

Thinking of you all and praying for you today. I am so glad she is able to take milk by mouth now, and I'm sure she will start gaining weight very soon. Good luck with the MRI and liver U/S today ~ positive vibes coming your way for those! Here's hoping you both have a good, productive meeting with the neuro-oncologist tomorrow. It sounds like you are a very strong, loving couple. Don't forget to take some time for yourselves too and recharge your batteries. Scarlett gets a lot of her strength from you ((hugs))
~ Rebecca (April/May 2010 BBC)

Heidi said...

My mom has an allergy to the adhesive in bandaids and medical tape. They can't really test for it, but when they stop using it and use elastic type bands/wraps instead (gauze tied over, etc) Especially with where the rash started you might want to ask about that.

When she has surgery or other complicated medical procedures obviously it cannot be completely avoided, but they can cut down in more places than you would think!

Anonymous said...

I can't imagine how difficult this is, but stay positive! Scarlett is a miracle in every way, shape, and form. God sent her to do His will, and though we don't know what that may be, we do know that He doesn't give us (and Scarlett!) anything we can't handle! Keep up the amazing fight, little butterfly! And you, too, mom and dad! We are praying for you like never before! =)

Chelsea said...

Thinking of you guys and hoping that both the rash and enlarged liver turn out to be minor issues.

Paula said...

Prayers on their way, to Scarlett butterfly.
Much love, xoxo

Anonymous said...

God Bless your family and give you all the strength you need! She is strong beyond our knowledge and will overcome

Bonnie said...

We'll start praying for a Karmic pass for Scarlett! She deserves it! Glad to hear that she is doing well otherwise.

Anonymous said...

Sorry you aren't out of PICU yet. Glad she is eating great and can hopefully start gaining weight!

I'm "allergic" (just meaning I get a rash) from medical tape. When I had my port put in, (like a PICC line but internal)the tape irritated my skin so much it caused a blood blister.

I just make sure to put it in my file to only allow the use of paper tape and make sure it is changed often.

- Rae Ahlmemeier (Florida)

satiglenn said...

The rash sounds like maybe a staph infection. They are rampant in hospitals, contrary to what some nurses may tell you. I would have her checked.

Anonymous said...

Praying for you and your family, Scarlett - just like always! Keep fighting hard, baby girl, and we'll keep praying for you and a Karmic pass.

Andrea said...

Praying and thinking about you everyday!! Sending lots of hugs and postive thoughts your way.

Jeremy said...

THinking positive thoughts for Scarlett. Try not to worry yourself with the what if's-- You and Chris are very strong, you are Scarlett's rock and she loves you so much for it. Keep doing what you are doing and this time will pass and she will be home with you where she belongs.

Sandy said...

I agree with you. Karmic pass on anything else would be only fair. I will keep that thought for you.

kerriwike said...

Praying for Scarlett, please, please let everything come back ok!

Melissa Berry said...

I agree completely! Scarlett deserves a karmic pass forever!!! Keeping you all in our thoughts and prayers. She is such an amazing little girl. And you are both amazing and inspiring parents.

Anonymous said...

Lots of Prayers, hope the rash is just an alergic reaction and all is back to being ok soon. Praying for your miracle. Hugs and Love!!

Love,
The Jasso family

Anonymous said...

Thank you for continuing to update us about your precious Scarlett. I was also thinking adhesive or latex allergy. My daughter has allergies and if it ends up Scarlett does as well, you'll get through it with flying colors. Nothing will ever be more difficult than this--and you are doing so well. You are a great mommy. My prayers are with your family daily.

LV and family
New York, New York

Hamblenarmywife said...

I too hope its just a little allergic reaction poor little lady has been through way too much already. "God just please please let her get better" she doesnt need to go through any other illnesses poor baby has been through enough i said!! She's such a fighter one amazing little fighter!! I hope and pray her tests come back all normal and she moves up im praying with all i have in me. the whole world loves you little lady!! {{hugs}}

Shmooksie Poo said...

You are amazingly strong! God bless your family.

Anonymous said...

A rash is one of the most commonly seen reaction to antibiotics, which I'm sure she's on. If they're not concerned, you're good. (i'm an icu nurse, believe me when I say it happens ALL the time) My cousin is a pediatric surgeon (he's a thoracic not a neuro) and he said that liver enlargement sometimes happens from the inability to filter all the drugs they get and just something they "keep an eye on in case they need to control the inflammation" and that "they wouldn't have prepped for brain surgery without checking out her other organs too. The would have seen something weird in the tests or scans if there was something pre-existing." I'm keeping my fingers crossed that everything is normal and wishing that little girl a speedy recovery. And also, please know that there are a whole lot of people praying for you all in Kansas!

Anonymous said...

Every time I read one if your updates I cry. I cry in sadness for scarlett being uncomfortable. I cry for you and your husband to have to deal with this. I cry for just thinking about what I would do in your shoes and I cry knowing that I wouldn't be able to handle it a fraction as well as you have. My son is 5 months old. Everytime I read your blog it kills me to imagine what you are going through..and I am always surprised by your strength. I don't know how you do it, but keep on keepin on because that attitude will only make scarlett heal faster. Your family is in my thoughts and thank you for allowing us complete strangers to be a part of your journey.

Jessica and Katie said...

I'll pray that you get moved soon and that the liver scan shows nothing serious. I also pray that the rash is just a minor set back and she begins to grow and gain weight soon! I hope that the appointment goes well. More love from Kansas
xoxo-Jessica and Baby Katie
Sept 2010 BBC

LeAnn in Fremont, CA said...

Oh my Goodness Brandi and Chris, if ever i have felt in my heart that a family DESERVED to be "out of the woods" and on to better and more JOYFUL times ~then it would definitely be this sweet angel baby, Scarlett and you two as the bravest, strongest, and enduring parents that you are!!! My prayers continue without ceasing, and it is my sincere prayer and hope that her liver and other organs continue to be healthy and that she continues to blossom in her recovery now and in the future when chemo is needed! You have such a little fighter in her, and I just know she will continue to fight her way to complete healing and restoration!! God will be sure to complete the miracle He placed within her and in you both~ I think about you all soooo much and i pray for every and any bit of respite you both may receive whenever and however you are able to get it. Praying the MRI comes out with everything being normal and lil' Butterfly continues to gain strength and the health of a superstar 3 month old that she is!! <3 As others have said, try not to bombard your mind with any what ifs, and just concentrate your vision of her whole body becoming completely normal and healthy!! Praying for the day you ALL three come home...and for good this time!!! Many, many {{{HUGS}}} Sending all our Love & Prayers to you three~ The Resh family~ LeAnn, Mike, Michaela & Landon xoxoxo

RLC said...

I continue to pray for you daily <3 Stay strong little butterfly and mom and dad.....we are all pulling for you! xoxo