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...

Social Worker

We had an easy night.  Scarlett is sleeping and eating well.  She has only needed Tylenol for some minor discomfort.  Because of the complication with her bladder, she has a foley catheter to drain urine.  We have to be extra careful not to yank it or catch it on anything, but it is not too bad.  I am hearing we might be discharged for Easter...fingers crossed!

I wanted to sing the praises of one of our hospital support staff - Analisa, our social worker.  She is the sweetest, most helpful person.  She comes to visit when she can, and it seems she has a knack for coming just exactly when I need someone to talk to, whether it is about problems with coordinating services, hospital living or adjusting to our new life with Scarlett.  Today, when I went to get coffee in the cafeteria, I ran into her in the hallway just as I was anxious about MI results; she is contacting the right doctors to make sure they come talk to us.  She recognizes Scarlett's voice (there aren't too many babies in neuro-oncology), so if she hears her making noise in the clinic or in a room, she pops her head in.  She listens and tries to help bridge the gap between all the different departments and us.  She has been a huge help in getting some financial assistance arranged, and explaining what to expect and what is available.  I so appreciate everything she does for us, and I am so glad we get to have her as part of Scarlett's hospital team.  THANK YOU!!!

By the way, if anyone has any good ideas on how to thanks hospital staff (besides the Girl Scout cookies my mom supplies us with) I would love some ideas!  :-)

Day 10

I have learned that my hospital breaking point is 10 days.  On day 10, I begin to lose my grip on "tough advocate mom" and slip into "weepy sad mom".  It happened earlier this month with chemo - Day 10 was NG tube day, and I cried a river about it for no real reason.  This time, Day 10 hit hard and I was a mess this morning.  I am tired, sore and sick of the beeping machines, vitals every 4 hours, nurses all night and of Scarlett being trapped in a bed.  Cabin fever is hitting hard.  Thankfully, Chris had today off and was here all night and day, and he helped to keep me from falling apart.  He's the best.

We started our morning with the little one asserting her independence and yanking her NG tube out.  It surprised her and she cried for a minute, but then she was all smiles - so proud of herself!  I was happy because we want it gone ASAP, but there is one problem: medications.  She is on high doses of electrolyte replacements that are so gross and such high volume doses that there is just no way to get them into her reliably without the tube.  When they tried to replace the tube right away, we asked that it be done while she was under anesthesia.  Now that her CSF is staying in her body, all the electrolytes should equalize and we can eliminate the medications and the tube.

Her MRI was delayed almost 2 hours.  We took her down and talked to her as they gave her Propofol, which put her right to sleep.  I haven't heard about the MRI results yet...I'm taking a "no news is good news" approach for tonight.

Radiology escorted her straight to the operating room.  There, they implanted a brand new shunt (VP non-programmable, for those of you with experience) just behind the old site.  While they were threading the shunt tubing down her chest and abdomen, they ran across a complication that we never anticipated: the previous infection draining from her CSF into her abdomen caused some damage to her bladder.  It was distended and full (even though she had been producing plenty of wet diapers) and slightly adhered to the inside of her abdominal cavity.  The neurosurgeon called in the general surgeon (brain guys don't mess around with abdominal issues) to take a peek with the endoscope to check for other problems, and to repair the damage.

We were pretty confused when the neurosurgeon began explaining this in the waiting room.  We were not expecting any abdominal issues, though it makes sense that the infection would have effects.  However, they feel it is resolved, that she should have no further complications and that it should not extend our hospital stay.  That's what they all say...

Once we saw her in the post-op room, we were reassured by how good she looked.  Despite having a few extra holes than we expected to see, she seems to feel fine.  She was thirsty and drank some glucose water (sugar - her favorite!).  She was crying (good) and sucking her pacifier (very good) and even smiled for me (the best!)  We found out that she got her way once more in surgery, too:  they could not get a second IV ("just in case she needs it" in addition to her port) even with the anesthesia.  We had been trying to avoid it since the last one failed a few days ago, and she won! 

Luckily, the long procedures meant we had a break from the tiny room and hospital walls.  Chris and I went to lunch at the Stanford mall across the street, wandered through the stores, had our first Pinkberry frozen yogurt, and generally took a deep breath.  We needed it.

Tomorrow will probably be very busy with visits from all the medical teams to discuss the events of today.  I will be awake early for rounds (around 7 for Neurosurgery).  I like to be ready for them, ready to listen and ready to ask questions.  On to Day 11.

Surgery #8 and MRI

Tomorrow is a busy day for Scarlett.  She will have her first post-surgical full brain and spine MRI.  She will aslo get a new shunt.

The doctors wisely decided to combine these two procedures to allow her to be sedated only once.  She has the MRI first around noon; it should take about 2 hours for such a detailed scan.  Then she will be taken directly to the operating room for the placement of a new shunt.  It will be implanted just behind the old site, where the skin and bone are more sturdy than the rest of the left side of her skull.

We are crossing our fingers for NO TUMOR GROWTH on the MRI.  We know from her CT scan last week that there is nothing large growing, but small patches could be developing.  We hope the chemo has kept any cells from regrowing.  I want to be prepared; today I talked with our Nurse Practitioner about how soon we will find out if there is a problem, and what we will do.  I need a contingency plan so that I won't feel helpless if it happens.  She does not expect to see anything worrisome; if there is anything, we have options.

The shunt surgery is good to get over with.  On the scale of Scarlett's surgeries, this is minor.  Recovery should be relatively quick.  We will still need a few days in the hospital to finish off the antibiotics, to be extra cautious of future infections.  She will always be at risk for these infections, so the surgeons are taking all the possible precautions.  We should not have to go to the PICU, should be able to come back to our regular room and settle back in for recovery.

I'll try to post an update as soon as there is news.

Un-fected

We are moving in the right direction - doctors tell us that Scarlett is infection free!  The CSF cultures from Thursday and Friday have come back clean, so we are planning for the new shunt.  The surgeons think that they will fit her in on Wednesday or Thursday.  She also has an MRI scheduled for Wednesday, so Thursday is probably more likely.  She is feeling GREAT, smiling at everyone who comes in, eating plenty and playing with her toys.  Her medications are dwindling back to a manageable 7 or 8.  Her blood counts are up and she is ready to get the last dose of chemo that she was too sick to have last week.

We have learned a little more about shunts.  Apparently, the rate of infection is very high and it is likely that this could happen again.  The new shunt will be placed on the opposite side of her head, the "clean side".  Infections are most likely in the first few months after implantation, so we'll keep a close eye on it through the summer.  Now that we have been through it once, we know what to look for, too: fevers, altered behavior, head swelling.  With every experience, we get more and more aware of her baselines and abnormal behavior.  If I ever notice these symptoms again, I think I would identify it or have doctors check her CSF early on. 

We are also much more aware of the large number of doctors involved in her care.  We feel like we have visits around the clock now.  She is currently involved in Neurosurgery (at two hospitals), Neuro-Oncology, Oncology, Hematology, Radiology, Audiology, Physical Therapy and Occupational Therapy.  All the medical teams have large posses that we may come in contact with; Department Heads, Attendings, Fellows, Residents, Nurse Practitioners, Therapists...I lose track of who's who.  Most everyone introduces themselves as they enter, even if they have been by before, because families get so inundated.  Soon, I'll profile some of our doctors; they are really amazing and so wonderful with Scarlett and us.  We feel very lucky to be in their care, even if there are so many!

I'm watching House (one of my favorites).  It is much funnier to watch now that I am so well-versed in hospital-ese.  I giggle every time the doctors explain a term to each other ("Do an MRI to get images of her brain!"), or actually perform a procedure themselves (they have people for that...).  I used to be an avid ER fan, which strangely has helped me understand some of the jargon...I think I'm just about ready for TV medical school!

6 Months!!!

Scarlett Grace is 6 months old today!  It has been a long, rough road for her but she has persevered.  We are so grateful for every day we have with her.

She has made some great progress in the last month, and we hope this infection does not cause too much of a setback.  Her eyes are much more centered and rarely drift to the left anymore.  She is tracking side to side better, and is beginning to do more up and down.  She insists on being held upright so she can look around.  She turns her head side-to-side and is working on holding it upright.  She reaches for toys and momma's fingers and face.  Her favorite toys make noise and have lights.  She grabs her hands at the midline and can stuff almost her whole hand in her mouth. 

She is feeling better still today.  Still no fevers, so it seems the antibiotics have finally taken effect.  Our goal is to get her up out of bed more and to do the majority of feeding by mouth instead of NG.  It is challenging because she has many wires and tubes connected right now, which is uncomfortable for her and us.  However, we are doing our best to keep her moving and entertain her.

Updated Numbers:

6 Months

26 Weeks

13 Pounds

24 Inches

41.5 cm Head Circumference (back to normal)

0 Shoe Size (she has tiny feet!)

11 Current Medications

4 Months since diagnosis

7 Surgeries (and one more on the horizon)

69 Days in Hospital

10 Rounds of Chemo Left

Fingers crossed that her next 6 months is easier than the first!

For The Kids

This video was made by Angelia, who is the mom of Nicholas, another SJYC07 kid.  These are all kids who are fighting brain tumors.  All were diagnosed before 3 years old.  Scarlett makes an appearance, as do our buddies Riley and Abby, whose stories (and mommies!) have been so helpful to me.

Downloading the song "For The Kids" by John Rich donates straight to St. Jude Research Hospital, which makes all of these kids' smiles possible.

Children's Cancer Fund of America

There are many organizations that offer assistance to families dealing with childhood cancer.  There is no way to plan for the financial burden that this kind of diagnosis brings.  Family income declines as parents stay home to care for the child, medical bills accumulate and necessary expenses like gas, parking and food take their toll.

We have been lucky enough to receive assistance from the Children's Cancer Fund of America, which provides a monthly assistance check to families with a cancer kid.  It is not a huge amount, but it helps to keep up afloat while I stay home to care for Scarlett.  With the most recent check, a letter explained that it would be the last until further notice.  The organization has had a huge decline in donations recently, and are currently unable to distribute checks to families.  They are hoping to resume in July, but need additional funding.

This won't make or break our budget, but I am worried about the other families who may not have such an extensive support system as we have.  They need help.  If you or anyone you know may be able to donate, please visit Children's Cancer Fund of America.

She is out of surgery and back on the surgical recovery unit.  The drain placement went as planned and she is recovering well.  She hasn't needed any pain medications since she came out of surgery, and she is cleared to eat as soon as she is ready. 

Still no fevers!  Now we wait for her CSF to be clear for 72 hours...

We are waiting to hear from the operating room that she is all done.  It should be really short - only an hour or so.  They are hoping to install (for lack of a better term) an external valve on the EVD so that we don't have to move to the PICU.  She went with the anesthesiologist without a sound, and he made sure to hold her pacifier for her.

Poor baby is hungry!  She is NPO (not allowed to eat) until surgery.  Just as she got her appetite back, too.  Surgery is scheduled for 1pm, so not too much longer.  We broke out her favorite treat, Sweet-Ease, to help hold her over with just a pacifier.

Good news so far:  No fevers overnight.  We hope that this means the antibiotics have taken effect and are beginning to control the infection. 

We are tired.  She is on a whole variety of IV antibiotics, and they run one after another all day and night, it seems.  With her more frequent vitals and neuro checks, we have some kind of beeping, alarming, crying or interruptions constantly.  It is hard to have her be woken up for vitals as soon as she falls asleep, but they need good monitoring before surgery.  She is tired too, so hopefully she will just snooze until she gets to the OR.

Surgery #7

Last week, we were nearing a milestone: Scarlett almost made it to more months than surgeries.  She will be 6 months old on Saturday; she had 5 surgeries before this week.  She'll have to go a few more months to hit that milestone now.

Scarlett will have her 7th surgery tomorrow afternoon.  Her shunt is infected; officially, she has ventriculitis, or infection in the ventricles of the brain.  Yesterday's surgery brought the drainage tube out of her abdomen to see if the infection would clear that way; it hasn't.  Tomorrow's surgery will remove the shunt completely.  It will be replaced with an external ventricular drain (EVD) until her CSF is cleared of infection.  When her CSF has been sterile for 72 hours, she will get a new shunt on the other "clean" side of her brain - surgery #8.

She is still having fevers every time the Tylenol wears off.  However, she is much more alert and responsive today.  She has been getting NG feeds all day and even wanted bottles on top of that.  Good girl!

We narrowly missed the PICU; we are on the surgical unit.  It is surreal to be here, as this is where we spent most of the time during her first admission when she was first diagnosed in December.  The nurses remember us.  Even though we have been here before, we are in such a different place in our journey.  She is just as precarious, even more "sick" than she was then.  We were so scared, so in shock about the truth that had been hiding in our daughter for her first two months.  Now, we are still unsure, still scared, but we know so much more about how to help her, what to expect and how to manage whatever comes our way.

I will update on tomorrow's surgery as soon as I can.

Surgery went well.  She is resting and seems to be feeling a little better.  The pressure is definitely lower in her head; her fontanel has gone from stiff and puffy to soft and squishy (I don't think those are the technical terms...)

It was a short procedure to pull the tube that drains her shunt out of her abdomen and attach it externally until the bacteria clears.  Once the infection is under control, they will put in a new tube.

Unfortunately, shunts are not a perfect solution to spinal fluid overloads (hydrocephalus).  They are easily infected, but they do an important job.  It was a known risk; I thought we would have a little more time than 6 weeks before it caused problems.

Now she gets a range of broad spectrum antibiotics to manage the infection until they can figure out where to go next.  Time to get comfy in another hospital unit.

THANK YOU to Auntie Lindi and Uncle Mike who drove from their house to Oakland to pick up MRI images and surgical reports from the other hospital and dropped them off with Chris at work this morning.  MRI data files are too big to e-mail, apparently, so the most efficient way to transport them in a hurry is us driving all over the Bay Area.

Surgery is delayed for a little while as they get her blood counts and electrolytes under control.

Bacteria

And the hits just keep on coming...

We're on high alert here.  It has been another long and difficult day, but we are finally beginning to get some answers.  We have done multiple blood cultures, urine cultures, stool cultures.  She has been on antibiotics for more than 24 hours.  But the fevers have not eased; every 4 hours, as the Tylenol wears off, the fever reappears, anywhere from 99-102.1 today.  We stopped feeding her, and she refuses to eat.  She is getting I fluids to keep her hydrated.

More troubling has been her behavior.  She has been awake and quiet for more than 12 hours.  She just won't sleep.  She got Benadryl and Ativan for nausea, and still didn't sleep (Ativan usually knocks her out within 20 minutes).  She has just been looking around and laying still all day.  She definitely looks sick and weak, and has gone down hill since yesterday.

After waiting all day for some positive change, I realized her fontanel was full, and the veins on her head were very prominent.  I had them call for someone who knew her head situation more specifically; since her head is different than any other baby head, the few professionals that see her regularly are the only reliable sources of information about what is "normal" for her.

When the chemo nurse practitioner came in, she agreed immediately that something was not right inside her head.  They ordered a STAT CT scan to get an idea of what might be going on.  We rolled her down to the imaging department, and she finally perked up a little and looked around; the "fresh" air of the hallway and the new sights got her attention for a little while.  She dozed during the CT scan (my phone didn't save the picture!) but woke again as soon as we moved her back to the crib.  She takes 5-10 minute cat naps, but wakes back up again.

The next step was to check that her shunt is functioning properly.  A neurosurgeon came to "tap" the shunt.  She stuck a needle into the resevoir under the skin and took a sample to culture.  She also checked that it was draining into her stomach properly...it wasn't.  

The preliminary results show bacteria in the spinal fluid.  She is exhibiting "altered mental status".  One of the doctors mentioned meningitis.  Her antibiotics have been ramped up to cross from her blood into spinal fluid (the two fluids don't touch.  Only certain medications can cross the blood brain barrier.  This is part of why her chemo is so severe, too).  We hope to get more information in the morning.

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Just before I hit "post", the neurosurgeon came back for an update.  There is a high level of bacterial infection in her spinal fluid.  Basically, her shunt is infected, and is draining infection into her abdomen.  She is scheduled for surgery first thing in the morning to have the tube from her shunt pulled out of her abdomen and hooked to an external bag.  It is a short, simple non-invasive procedure that should take less than an hour (small beans in Scarlett-land).

We will be transitioning between oncology and neurosurgery teams, and moving to the PICU, so I won't be able to post an update until we are settled somewhere later in the day.

Readmitted

Apparently, Scarlett was not ready to be home.  She missed her nurses and hospital friends, so she made sure we were back before too long.

Yesterday, Scarlett woke up early while Chris was getting ready for work - about 3:15 am.  She gagged and sputtered a little, so I gave her a dose of anti-nausea medication, then changed her diaper to settle her back to sleep.  As soon as I picked her up, I noticed she was burning up.  We took her temperature a few times, and as soon as I saw 102 I called the on-call oncology doctor.  The rules are clear:  a temperature that high requires emergency room ASAP.

Chris had to go to work.  I packed Scarlett up, threw on some shoes and headed for our local ER.  We had been there once before, the day the tumor was discovered.  I was not thrilled to be there under any circumstance, but even more concerned that they would not know how to handle Scarlett's specific medical issues.  I was right.

We arrived at 4am.  They found no fever, but wanted to do blood cultures anyway.  I was hesitant, since Scarlett was supposed to have blood work and chemo again later that day; I didn't want to expose her to infection or hurt her more than necessary.  Unfortunately, another call to the on-call oncologist made the choice easy - she said do the cultures.  The nurse accessed Scarlett's port and drew the blood. 

Fevers indicate infection of some kind.  With her immune system compromised by the chemo, Scarlett is very susceptible to infection and even a run-of-the-mill illness can be life-threatening to her.  Her port, while under the skin and only accessed in sterile conditions, is a likely source for infection, so any fever means that a sample of blood is drawn to see if her port is infected, and another is drawn from her arm to see if any other infection is present.

The arm sticks were really hard because her tiny veins are hard to find, and don't give much blood.  The phlebotamist had to poke both arms and still barely got what she needed.  Now both arms are bruised from the elbow to shoulder.

After a few hours, with no fever and blood cultures likely going to take all day, I was ready to take her home and take a shower before she would see her regular team at Stanford.  That's when things got crazy.  The ER traffic started to pick up once the sun was up - car accidents in morning traffic, a guy who took too much 5 Hour Energy and a guy screaming and jumping around in pain needed the nursing attention.  None of the ER nurses knew how to de-access the port (the one who accessed her had left by then).  They didn't know what medication to use to lock it off, what procedures to follow, and it began to make me nervous.  When they handed me a 22-page print out of "How to Treat Patients with Venous Catheters", I called the oncology advice nurse, and she basically said to get the baby and go, leave her accessed and bring her straight to her regular nurses so we didn't risk excess bleeding or infection. 

We did just that.  I signed off that I was taking her with the port accessed and we drove across the bay.  It was about 10:30 am when we were brought into the outpatient clinic for monitoring.  Her fever was back, she had chills and there was a little blood in her diaper.  Her blood work showed that she had very low blood counts and needed a blood transfusion.  Low platelets make her bleed and bruise easily, and can cause bleeding in her intestinal tract.  They redid all her blood cultures (including the ouchie arm draw- which again took both arms!) With her fever high and the other factors at play, she was admitted for at least 48 hours to figure out what is going on.

Overnight, her fever hit over 103.  Tylenol brought it down, and it seems it has cleared.  She does not want to eat, so we are feeding her through the NG tube.  She is not feeling well; it is obvious just by looking at her.  As much as it stinks to be in the hospital yet again, I am glad we got here before it got any worse.  She hasn't been anywhere or with anyone other than family, so I don't know what has made her sick.  It will be a while before the blood cultures come back with any results.  It is scary to think how quickly and severely she can go down hill.

Hopefully more good news soon...

Turning Point

It's been a tough few days.  Scarlett seemed to be doing really well on Friday when we got discharged.  By that night, as we were getting ready for bed, she lost her good feeling.  She was sick over and over again.  I was on the phone with the on-call oncology doctor to figure out how to re-dose medication she threw up a few times, since every time we got some in, it came right back out.  Once she started, she couldn't stop.

We decided to hook her up to the feeding pump for a slow drip of Pedialyte overnight to rehydrate her.  Once she is dehydrated, she spirals down very quickly, but it seems that a steady stream of fluid brings her back.  I have also experimented with her medication schedule and have a better idea of how to time all the anti-emetics to keep her on track.  She has 8 daily medications to balance side effects, deficiencies and immunities.  

Now, after a few days of slow improvement, she had a full 4 ounce bottle with no problem.  I don't think we will rush to remove the tube, but I am optimistic that we have turned the corner on this round.  She is perking up, had a bath and is now calling me to rescue her from her crib after a nap.

Finally

Scarlett and I are home.  She is sleeping, I am unpacking and cleaning up.  As soon as Chris gets home from work tonight, all will be better in our little world.    She is still tolerating the tube well and has kept most of her feeds down.  Our goal is just to get to our Monday clinic appointment without being in the ER.  Fingers crossed (and knock on wood!!)

Thanks for all the support while we were there; I was so glad to have comments, suggestions and e-mails to read while I sat in the hospital.  You are all awesome!!  I'm going to try to get some new pictures this weekend if she's up for it.

Enjoy your weekend - we will be enjoying ours!

Spoke Too Soon

I always get warned to knock on wood when I express my eagerness for things.  Yesterday, when I told the nurse I was happy we would be discharged since Scarlett was feeling so good, she said, "I hope so...knock on wood," as she tapped the door on her way out.  I should have listened...

We were doing great.  The little miss was eating and smiling, cooing and resting.  Chris said goodnight to go home and rest before work today.  Scarlett and I settled in for another night.  I made a bottle, got comfortable with her and she was doing well...until she wasn't.  I found myself suddenly sitting with her in a puddle of the formula that she had tried to eat but could not keep down.  Our wonderful nurse came to help me clean her up and get some medication in her while I changed clothes and the sheets on my bed.  Scarlett fell asleep, but I wanted to wait until her last dose of chemo was complete and be sure she was okay, so I didn't go to bed until after midnight.  

Then at 2am, I heard the nurse come in to change Scarlett's diaper.  I am always so grateful for their help with this each night, since she is on such high fluids that she needs to be changed every few hours before the diaper gives out.  However, she is pretty picky about her pacifier to fall asleep, so I usually need to help get her back to sleep.  This time, I felt that her blanket was wet.  When I lifted it off of her, I saw that the bed around her was soaked with blood.

Don't panic.  I did, but quickly realized that the IV had somehow come unscrewed and was leaking fluid from the pump and blood from her port onto the bed.  I have no idea how this happens, but it is not the first time.  The nurses came in to help clean everything up and reset her IV because it was a contamination risk.  This meant her port needed to be de-accessed (the needle removed) and then reaccessed (the needle put back in).  We put the numbing cream on, let it sit for 30 minutes, got her hooked up again and then finally settled back in for sleep around 3:30.

I awoke at 7:30 to her suddenly screaming and gagging.  I turned her on her side so she would not aspirate, then called the nurse for medication to calm her down, and she drifted back to sleep.  Unfortunately, I was awake and not going to sleep again any time soon.  Rounds were starting and we began to get visitors.  

Our neuro-oncology nurse practitioner came by early, and I could tell by the look on her face that it was time: NG tube day.  She said that she completely understood why we wanted to hold off, but now Scarlett's risk of dehydration was high, so she was not comfortable letting us go home without it (she was quite sure we would end up in the ER before we saw her again in the clinic Monday).  This is what we were waiting for - for someone to tell us she needed it NOW, not "she might need it soon."  

The tube went in this morning.  It only takes a minute for the nurses to snake it down her nose into her stomach.  It has made her a little uncomfortable as she adjusts to what was described to me as "a thick piece of spaghetti down her throat."  However, she seems to be handling feeds well and, if it keeps us out of the ER on the weekend, I can deal with it.  I have learned how to check for placement by using a stethoscope to listen as I pump a bubble of air into her stomach; I have administered some formula and medications via the tube while she sleeps.  Tomorrow, I will learn how to use the pump that can run feeds overnight (we aren't sure we will need it, but I need to learn).  Soon, I will once again mom up to learn how to place the tube myself.

Now, I will casually say we will leave tomorrow, but I have learned far too much to say for sure.

Improvement

Such a relief - she is feeling good!  The medicines are working to prevent nausea and vomiting so far, and she is even eating without a fight, though a little less than she should.  The doctors adjusted her dose of Ativan, which helps with the nausea but also sedates her, so now she is not a zombie baby.  Early this morning, she was pretty out of it, but now she seems to be handling it wonderfully.

She still gets one last dose of chemo tonight, but then...we should get to go home tomorrow!  I'm not going to pack up just yet, but everyone seems to agree that she is ready to go.  We are working out a very tight schedule of formula, medication, and Pedialyte to make sure she does not get dehydrated.  I'm going through all her prescriptions to make sure we have everything for the weekend...Zofran (nausea), Zantac (reflux), Benadryl (nausea), Ativan (nausea), Magnesium (she's low), GCSF (injections for to raise immunity), Magic Mouthwash (mouth sores), Septra (antibiotic).  I think that's it for this week.

We also had a physical therapy consult this morning.  We have been eager to get her back into PT ever since she left the other hospital after surgery, but the scheduling was difficult.  The nurse practitioner got tired of them taking too long and put in for an inpatient consult, which took less than a day to happen.  The therapist saw how hard Scarlett struggles to hold her head straight and gave us some easy stretches and holds to help strengthen her neck and shoulders.

I did find time to read a book.  I have been waiting for months for BossyPants by Tina Fey to come out.  I downloaded it to my Kindle last night and read the whole thing.  I felt like it coming out so near my birthday was a personal gift.  It is hilarious and fun to read, especially if you like Saturday Night Live or 30 Rock.  I am pretty sure that Tina and I would be great friends if we ever met.  :-)

More Chemo

Well, we're still in the hospital after 9 days.  Not the longest we've been in, but it still feels pretty long.  She's feeling well today, though...

My birthday ended pretty well.  My mom brought me a Sprinkles cupcake and a new shirt, and then Chris surprised me by trading shifts and getting the next two days off to spend with us.  It is so much easier to be stuck in the hospital when he is here to keep me company and make Scarlett smile (he gets her best smiles).

Last night, she needed a quick blood transfusion to replenish her red blood cells.  She is almost certainly going to need another full red cells and platelet transfusion in a week or so, too.  Transfusions are not really a big deal, since her port is already accessed, but it is more dramatic to have a bag of blood hanging over her.  However, her white blood cells are good and high, so we are on track.  Her Methotrexate has finally cleared to an acceptable level, but now it is time to hit her with the next drugs.  This time, it is a cocktail of three medications, which made her pretty sick last month and led us to the emergency room.  We are trying to be proactive this time, and plan to keep her on around-the-clock medications to help stave off vomiting (or emesis, my new word of the day) and have Pedialyte on hand to help keep her hydrated.  Hopefully she will feel better, eat a little and not lose it all.  Unfortunately, these medicines keep her pretty sedated, so she will not really be herself.  

Please keep the little lady in your thoughts as she battles this intense chemo over the next week.  It is hard for her and for us.

Birthday

Today is my 28th birthday.  I know I'm still pretty young to most people, but I feel like the oldest 28 year old on earth.  I usually love my birthday, but this year is not going to be much fun.  We're still in the hospital, and there is no plan for discharge in the next few days.  I did get out last night when my parents stayed with Scarlett and Chris, Lindi, my grandma and I went to dinner at the Cheesecake Factory a few minutes away.  It was great to get out again, but I missed Scarlett and it felt strange to try to have fun while she was hooked up to an IV in the hospital.  Chris has some fun plans for me once we are home.

Last year on my birthday, I felt like my life was hectic; I was a few months pregnant, Chris was finally hired to a job after months, and my new job was fun but exhausting and already headed for pink slip.  This year, things are still chaotic, but there is no end in sight, and I can't even predict what might happen next.  I hope that next year, I can look back and think about how far we have come, and have it be behind us.

 

For now, we just deal with today.  They check her levels with a blood test each afternoon.  They dropped off quickly at first, but now are slowly tapering off.  We measure in hours.

Hour 1 - High Dose Methotrexate (HDMTX) administered

Hour 2 - Remainder of Methotrexate (MTX) begun

Hour 23 - Check blood levels

Hour 24 - MTX ended

Hour 42 - MTX level was 1.6

Hour 66 - .26

Hour 90 - .11

Hour 114 - .05

Hour 138 - .04

Last time, she had to clear below .05.  This time, I am not sure why we have to go lower, but I heard below .02.  It could still takes a few days to reach that level.

The concern in that the fluid in her head is holding the chemo longer than it should, and it is toxic to her kidneys and bladder, so she needs high amounts of IV fluids and a medication to protect her organs as long as the chemo is measurable in her system.  We are hoping to start her next chemo tomorrow morning to keep moving ahead, but the protocol may not allow it to begin until MTX clears.

Over the weekend, all of our regular doctors are off, so I didn't get much chance to ask what the plan is now that her methotrexate is clearing so slowly.  When I see them today, I want to know if this is the expected routine for the next two cycles; I need to plan ahead if we will be in the hospital for 2+ weeks each month rather than a few days.

Another Day

We're not leaving any time soon.  It looks like this admission will just run right into the next one, so we may not go home until later next week.

Scarlett is doing well.  She is a bit sleepier than usual, and isn't eating as much as she should.  Some other side effects are setting in; mainly, sores in her mouth and throat.  These have made her little voice gravelly and squeaky.  We have a "magic mouthwash" of Benadryl, Maalox and Lidocaine to alleviate any pain, but we haven't seen any in her mouth that we can reach with it yet.  Last time, these sores cleared after a day or two, so hopefully she's already through the worst of it.

Now, I am just managing my own boredom.  I have watched a ton of movies (just flipped to the new parent Trap and can't believe how Lindsay Lohan used to look...) Thank goodness I have this laptop.

Staying In

It looks like we're going to be here a while longer...

Her methotrexate level is still too high for discharge.  They don't anticipate her being clear today...maybe tomorrow, but no guarantees.

We are scheduled to be back on Tuesday, so I'm just hoping we get at least one full day out in between...preferably Monday, since it's my birthday.

The other day, I went to the support group for parents that is held in the oncology unit each week.  It is led by a mom whose daughter is 2 years out of leukemia treatment and a hospital social worker.  They bring in cookies and fresh fruit and just provide a space for parents of patients to meet, talk, vent or whatever they need.  

I met the parents of another patient here.  Their 13 year old daughter was diagnosed with leukemia over the summer.  She has been having chemo treatments since then, but now needed a bone marrow transplant.  She had her transplant last week, and must be here in isolation for 6 weeks, then stay at another facility until day 100 after her transplant.  During this time, she has a very restricted diet with no microbial contaminants, which means no milk, no fresh fruit, no outside food.  She can't leave the room, and everyone who enters must scrub hands for 2 minutes, wear masks and shoe covers to protect her from germs while her immune system rebuilds.

I can't imagine how difficult it must be for that girl, let alone for her parents, who are staying at the Ronald McDonald House and traveling over 2 hours when they need to be at work.  I am so grateful that Scarlett is so young, that I am able to be with her, and that we live so close to the best treatment.