Weekend Again

Not much has changed or happened in the last few days.  Scarlett has some mucusitis (mouth sores) that we are treating with a new medication that seems to help.  We are waiting for her chemo to clear her system; blood levels are still high, so I don't expect it to be clear until Monday, which means we'll just stay to start the next course on Tuesday or Wednesday (I made a deal with the doctors not to send us home for less than 2 full days - I'm not sure I could deal with packing up and going home with just enough time to wash everything and come right back.)

Yesterday we got to see her latest MRI.  We knew it was clear and clean (no tumor!!), but we wanted to see it.  It is AMAZING how well she functions when you see that MRI.  Where the tumor was...is just a hole, about the size of an apple, I'd guess.  Her right hemisphere has expanded a little, so the midline is almost centered.  There is some remaining left hemisphere tissue in the frontal, temporal and occipital lobes.  Other than than, it's just a hole filled with fluid.  We got confirmation (or reassurance, maybe?) that the tumor grew with her brain in utero; the left hemisphere never developed fully.  Maybe our fascination with these images is a bit morbid, but seeing it makes it so much more concrete and easier to understand (I'll get an image to put up someday.)

During this meeting, we also discussed the next steps with her hearing.  The neuro-oncology team was very surprised to see such loss in such a short time; with the unexpected complications of the infection and need for antibiotics, which all contributed to her hearing loss, she lost a lot of hearing in just two months.  She has other confounding factors as well, like the thin and missing bones on the left side (which will grow back eventually) that don't allow the sound to resonate properly in her head.

Good news: She may regain some hearing.  We are changing her chemo plan a little to use a less ototoxic medicine (which may also be easier on her nausea - yea!).  However, from the current test results, she will likely still need the hearing aids.  This doesn't really bother me too much, though I can't imagine how you convince a toddler to keep hearings aids on!  We will have another hearing test in a few weeks to confirm and remeasure, since the infection and antibiotics will be clear by then.  Hearing aids will be fitted and in place by the end of June, we hear.

The best news for little miss:  we are beginning cereal!  I am not sure why this is so exciting for new moms - it's messy and takes time to organize, but it is so rewarding to see her eat!  She's not a big fan yet...

...but she's tolerating the cereal and my goofy encouragements.  Her occupational therapist felt she was ready and wanted to see if she could handle it, and I think she has done great.  They are encouraging us to keep it simple and fun, not to expect too much too soon - they are calling it "recreational purees".  It's great to see her doing well with something that other 6 month olds are doing!

Hearing

Chemo went well.  It took a while to get started, so she finished the 24 hour infusion at midnight.  No side effects right now.

Tuesday, Scarlett underwent an extensive evoked-response hearing test.  She was sedated, then brain waves were measured as different ranges of sounds were presented.  It took over two hours for the procedure; I got a chance to wander the mall a bit and get some fresh air while I waited.  When I returned, the audiologist had some bad news:  Scarlett has mild to moderate hearing loss in both ears.  Her left ear is slightly worse than the right. There has been some discussion of fitting her for hearing aids.  Not the worst thing we have faced, but yet another challenge for our sweet baby girl to overcome.

Two months ago, we had a preliminary hearing test that showed no deficits; her hearing was unaffected by the tumor and surgery.  We knew that one of the chemo drugs was ototoxic (hearing-damaging), but our doctors felt it was the best option.  We learned that the antibiotic used to treat her shunt infection can also have ototoxic effects.  The infection itself may also be a contributing factor.  There is not really any way to know what caused it, nor how much hearing will be regained as the medications are changed or removed.

We've been in the hospital for 18 days and counting, our second-longest stay.  We have to stay at least until the current chemo clears her system, which usually takes 4-5 days.  Then we run right into her next dose; if she takes an extra day to clear, we will just stay on through.  If she clears earlier, we will go home for a few days before being readmitted. 

Left and Right

St. Jude is spotlighting brain tumors recently, and posted some resources for families.  If you are interested, there are two interactive slide shows: Basic Neuroanatomy Diagrams and Neurology Exam Tutorial.  In the exam slideshow, you can see that many of the noninvasive diagnostic tools are no help in determining the neurological function on a baby (like identifying smells).  In the diagram, Scarlett has very little left brain, so the right has (or will, we hope) take over many of the roles of the left brain.

I also found some advertisements that made me smile.  They are from Mercedes, and point out the difference between left and right brain processing.  Our doctors have prepared us (as much as they can, which is not much) for Scarlett to be a right-brain dominant person.  They anticipate that, which injuries like hers, she may have trouble with logical processes and functions, like math.  However, functions like creativity are likely not damaged.  It is likely that her right brain will adapt many of the left brain processes for itself to help her function; particularly, language.  Some clever advertisers came up with this:

Left Brain:  I am the left brain.  I am a scientist.  A mathematician.  I love the familiar.  I categorize.  I am accurate.  Linear.  Analytical.  Strategic.  I am practical.  Always in control.  A master of words and language.  Realistic.  I calculate equations and play with numbers.  I am order.  I am logic.  I know exactly who I am.  Right Brain:  I am the right brain.  I am creativity. A free spirit. I am passion. Yearning. Sensuality. I am the sound of roaring laughter. I am taste. The feeling of sand beneath bare feat. I am movement. Vivid colors. I am the urge to paint on an empty canvas. I am boundless imagination. Art. Poetry. I sense. I feel. I am everything I wanted to be.

 

 

When I was looking at those, I found these as well:

It's not as black and white (or gray vs. colored) as these, but I can't help but wonder what her brain will be capable of doing as it shapes her world using the right brain functions.  Who needs math, anyway?

Easter

Just a sweet shot of snuggling with Daddy.

We had a lovely Easter, despite the location.  The Easter Bunny visited sometime in the night, so we woke up to a fancy basket full of goodies for Scarlett.  We had lots of visitors - Daddy came after work, plus grandmas, grandpa, aunties and uncles, even a great grandma!

Scarlett was a bit drowsy, but we did get a picture of her Easter dress.  I bought it just in case we made it out in time, but had some fun hospital dress-up anyway.  The nurses were so excited - they  clapped and oohed and aaahed as soon as they saw her.  

I cut her new NG tape into a bunny.  It's my kindergarten teacher-ness.

Her Easter dress

A fancy nap

Hope everyone had a nice day.  Tomorrow we start Cycle 3 of chemo.

Boredom Management

Day 13.  Waited all day to move downstairs to oncology, but they are just too full for now, so we stay put.  I was so happy to have something to do, I packed up for the move...but now I have to strategically unpack what we need until we do move.  Scarlett had a good day, as she had the foley catheter removed and was cleared to be off the monitors during the day.  This meant she could go on a walk with momma around the hospital, play on the couch and visit the nurses station to be smiled at.  Fresh air, new faces, less beeping = much better!

I am feeling a little sad that we aren't home dyeing eggs and making an Easter basket.  I bought her a dress just in case, so we are going to put it on anyway, even if it is just for the nurses.  It was just too darn cute to pass up.  It sounds like the entire family will be coming over to visit tomorrow, so I am sure we will have lots of Easter fun.

I am keeping myself entertained with an ever-expanding arsenal of material.  I have been reading the Hunger Games trilogy by Suzanne Collins.  It is a young adult series that is an easy read, though somewhat horrifying to think about - teenagers fighting to the death for political sport.  I'm on the third and final book (all three books have taken me three days).  The first book is being made into a movie soon.

I am also a tad obsessed with Pinterest (which I learned about from Sherry at YHL).  It is a website that you can tag pictures of whatever you want and make albums that can be shared with other users.  I have an album of things I like for Scarlett, things I would love to do in our house, projects for school, quotations, and just fun stuff.  I love all the creative projects that people share! 

I also have been trying to keep up with e-mails and messages we receive.  I see that many people post questions about Scarlett's diagnosis/treatment and other things in the comments, but I don't really have  away to answer them directly.  I am thinking that with my otherwise idle time, I can write an FAQ post.  If you have a question, e-mail me and I will try to answer some things if I can.

Happy egg hunting!

Busy Morning

We had a very long morning after a long night.  

Everything was going great until we started to notice that Scarlett was having periodic episodes of grimacing and slight twitching.  This happened once before, and anti-reflux medication was given, which seemed to solve it.  This time, she is already on the anti-reflux meds, and pain medication did not stop it.  I immediately considered seizures.  I waited as different doctors and nurses (and even I) thought I may be overreacting.  Then around 8 pm, I realized it was more frequent, every few minutes, and each episode lasted about 30 seconds.  Shudder, eyes clamp closed, grimace/frown, ticking head...then nothing.  Her eyes opened as if nothing had happened, no disorientation, no pain, no elevated heart rate or respirations.  Very strange.

Finally, a nurse sees it from beginning to end.  She sends in another nurse, who sees it all and calls neurosurgery.  They send a resident, who essentially says, "Huh."  I hate when they do that.  She calls the attending doctor, who then order immediate seizure medication and an EEG first thing in the morning.

First of all, I hate when doctors order things for my child without seeing her.  I usually protest, make them send a doctor who has some influence or power, before I allow new medications to be given.  Or I cry; either way, they send someone to look closer, examine and explain.  I did this (without the crying) and they made sure it was safe to start the new medication.  However, I was not convinced it was seizures.  There was no physiological response beyond the movements.  She didn't seem hurt; she smiled in between, even did it with a bottle in her mouth.  I e-mailed the Neuro-Oncology team, who are, above all, advocates for Scarlett and know her best, so that they could be involved as soon as they were on site.

This morning, rounds began early.  The general surgeon came to check her belly incisions.  All good.  The neurosurgery resident came to check her head incisions and to ask more about the episodes.  Fine.  Then, the EEG technician came.  We did a 30 minute EEG (which takes twice that long to set up and disassemble.) 

The sleepy girl ready for EEG.  Each colored wire is attached to an electrode glued and taped to her head.

Then the full neurosurgery team came (at least 10 people) to check her out, remove bandages, admire their own work, and tell me what was (and was not) happening for the day.  Then Audiology came to test her hearing, as is mandated by the study protocol.  Then neuro-oncology came.  Then infectious disease.  Then...someone else, I don't remember anymore.

The problem came with the audiologist:  there has been some hearing loss caused by the chemo.  We knew it could happen, but I wasn't really expecting much this early on.  More tests are being ordered before any decisions are made or final results are determined, but it was the final blow that made me lose my cool.  

Our fabulous, fantastic, wonderful, awesome neuro-oncology nurse practitioner Trish came to break it all down for me.  I fell apart as soon as she came in, just not ready to handle one more single thing.  I wanted to barricade the door, not let anyone else in to tell me bad news or make Scarlett cry.  She brought in the doctor, and we all sat and just talked about what was happening, how hard it has been for us.  Their official position:  the EEG did not show seizures.  Even if she does have them, it is not going to cause any damage, and medication can manage them.  The hearing loss is minor if at all at this point, and, compared to the alternative, it's manageable.  Long term, if she needs hearing aids or speech therapy, we can easily make that happen and she can function perfectly well.  They calmed me down, reassured me that she is doing well by all accounts, that they will be cautious and conservative, and how excited they are to celebrate her 6 month mark.

Things finally quieted down.  We will move to the other unit as soon as they have a bed ready.  We will take it easy over the weekend, then begin Cycle 3 on Monday.

PS - My mom found chocolate covered strawberries for the nurses...definitely a good choice!

Longer

Good News:  Scarlett's first post-surgery MRI was CLEAN!  No tumor growth since January.  No problems whatsoever, other than the inflammation from the recent infection.  That will go away.  NO TUMOR!!!!!!  It is comforting to know that it seems we are on the right track so far, that our hard work so far has paid off.  We wait another two months for the next scan.

Not So Good News:  Scarlett needed more blood today.  She just can't keep her blood counts up right now.  Platelets are ok, red cells down.  Hopefully it levels out soon.

Good News:  She is playing with toys!  She is grabbing plastic key rings and rattles in either hand and hanging on, even shaking them once in a while.  Awesome progress on her hand coordination!  

Not So Good News:  We are not going home any time soon.  We had a visit from the Infectious Disease department (add them to the list!).  The consensus is that she needs IV antibiotics for at least 10 more days.  THey are not comfortable sending us home on the weekend, even with home nursing, because there is not the same hospital support staff available on the weekend.  Then...we start chemo again on Monday, if you can believe it.  Scarlett and I were home for a total of two days in this entire cycle, probably for the entire month of April.  We might hope to go home NEXT weekend, around the 29th or 30th, but know better than to make plans.

Good News:  We get to move back downstairs to the Oncology floor tomorrow.  We have been well taken care of on the surgical unit, but we are ready to go back to the quieter, calmer and more relaxed unit.  It is more designed for long-term stays, where parents have a double fold-out bed, access to water, refrigerators, washer/dryer independently and don't have to have so much monitoring.

Thanks for all the great suggestions for ways to thank the nursing staff.  I know, like all my teacher buddies, they are over-worked and under-appreciated much of the time.  I'll start planning something...