So Far, So Good

Scarlett was doing so well that we were discharged early yesterday.  She does not have to be back in the hospital for almost 4 weeks!  I'm crossing my fingers that we make it that long...it would be the longest out since her December diagnosis.

The strangest, yet best thing so far: she has not thrown up ONCE from this chemo.  I'm not sure why, or if it will last.  It doesn't really matter.  It is such a relief.  We are still handling her very carefully and giving her all the anti-nausea medications (which don't usually work all that well).  The idea that we could be turning the corner away from sickness is almost too much to handle.

It is another busy week.  Today we visit the Ear, Nose and Throat doctor to have her ears checked before hearing aids are fitted in July.  This is apparently a formality, as I can't imagine that after all the doctors, NPs, nurses and specialists she has seen, plus MRIs and CTs, that we would find something abnormal about the anatomy of her ears.  I'm always ready for surprises, though.

Tomorrow and Thursday we go for labs, and I will bet she will need platelets.  One of the chemo drugs is really hard on her platelets, and with the drama that ensued last month, I will be watching those numbers very closely so we don't end up in an emergency situation again.

We're hoping we can fit some fun things in, too.  We got free tickets to the county fair, which we haven't been to in years.  As long as it doesn't get too hot!

Quick Update

Chemo is going well.  No sickness yet, but the yuckiest is yet to come.  She is irritable and hasn't napped all day.

Our neighbor was discharged.  Just in time, I think, for everyone's sanity.  The nurses are trying to keep the other side of the room empty tonight, as they don't really have the staffing for today.  I'm not going to hold my breath, though.

Scarlett's new cousin will officially be a boy!  

Best wishes to everyone participating in Relay For Life this weekend in Fremont (and anywhere else!)  We are sad we can't be there, but we so appreciate the work that everyone does to support research and families.  There are still events throughout the summer all over for those who want to participate!  We're still hoping to attend the Newark event in July.

Crowding

It is becoming painfully obvious how overcrowded our hospital is.  They were just approved for expansion and will begin construction soon, but (hopefully) we won't be around to see that.  Nearly every time, there are not enough beds for the kids who need them.  Even when they use beds on other floors and in nearby hospitals, we still get pushed back for admission because it is just too crowded.  It took nearly three hours to get through our clinic visit on Wednesday, and we were not the cause of any of the delays.  Our doctors seem to be running from patient to patient, and while I always feel they are listening and that they really know Scarlett well, I feel bad taking up any extra time that I know they would be with another patient.  It is frustrating, but we are committed to the doctors here, as so many others are, so we try to stay calm and be understanding that it is not anyone's fault that so many kids in this area are battling such difficult diseases.

Scarlett's admission got pushed overnight.  We waited all day yesterday to hear that they were ready for her, and then heard at 5 pm that we were not going to get a bed.  It was nice to have an extra night at home, but it just delays the inevitable.  We got the call this morning that they were ready, so Scarlett and I got settled and chemo began this afternoon.  So far, no reactions or side effects, though they always seem to hit in the middle of the night.

We are, of course, in the one and only shared room once again.  Our neighbor is a very well-meaning 9 year old boy.  He is waiting for his levels to clear, something we are more than familiar with.  He has tried to be very patient and understanding when Scarlett cries (which has been a LOT!), and apologizes through the curtain when he gets a little noisy.  I feel bad for him and his dad, as Scarlett has recently become very difficult to get to sleep.  As hard as it is at home, it is even worse in the hospital, where the sights and sounds are distracting.  Just as I think she has settled down, she revs up again.  Hopefully its just one of those phases everyone talks about.

Tomorrow she gets another dose, and then we should be released on Sunday afternoon.  Thanks everyone for the well wishes and positive energy sent her way!

Round 5

We are waiting for the call to go in for Round 5 of chemo.

As we move into the Consolidation phase, there is a lot of new information to read through, new drugs to worry about, new side effects to manage and a new schedule.  Last week, we reviewed and signed the consent form for the remainder of Scarlett's chemotherapy treatment.  It is a 25-page document that outlines all the schedules, medications, side effects, risks and rights for the next 8 months.  The last time we signed a consent like this, it was before chemo began, and we were so overwhelmed with information, it seemed like an encyclopedia volume of scary stuff.  This time, we know what to look for and what to ignore.

First, the schedule for the next 8 months.  Each cycle is still 28 days.  The dates are loose, since everything depends on her counts, which are recovering more slowly each round.

Rounds 5 and 6 (June and July)

• Day 1: Cyclophosphomide and Etoposide (IV, each over 1 hour)
• Also given Mesna, a medication that protects the bladder from the effects of chemo.
• Day 2: Carboplatin and Etoposide (IV, each over 1 hour)
• Days 3-28: NO CHEMO!  She gets to rest, recover and relax.  She will still visit the clinic each week for blood draws and urine tests, need multiple blood and platelet transfusions, as well as get daily injections to help bring her immune system back. 

Rounds 7, 9, 11 (August, October, December)

• Days 1-21: Cyclophosphomide (Oral)
• Days 1-10: Topotecan (Oral)
• Days 22-28: Rest. 

Rounds 8, 10, 12 (September, November, January)

• Days1-28: Erlotinib (Oral)

Theoretically,  we will not have to be inpatient at the hospital after July.  The oral drugs will be given at home, mixed with syrups or applesauce (pending we can get her to eat by then - otherwise, we will have to keep the NG tube). 

MRIs will continue every 2 months, as well as hearing tests to monitor the effects of the chemo (though she is no longer getting ototoxic drugs, the study is monitoring the longer term effects).

Some of the drugs she will be getting are the same from the last 4 months, but there are some new additions, with side effects all their own.  The study breaks the side effects into 3 categories: Likely, Less Likely and Rare but Serious.  I try to focus on the Likely column, but that Rare but Serious column always catches my attention.  Each drug has nearly a full page of possible side effects listed.  Just some:

• Cyclophosphomide (a hold over from Rounds 1-4):
• Likely: Loss of appetite, nausea, vomiting, hair loss, lowered blood counts.
• Other possiblities: Diarrhea, bleeding in the bladder, blurred vision, rash, heart muscle damage, a new cancer or leukemia...yes, that's right.  A new cancer.  Rare but serious, for sure.
• Carboplatin (another repeat from earlier rounds.  This replaced Cisplatin when it destroyed her hearing).
• Likely: Nausea, vomiting, lowered blood counts, abnormal electrolyte levels.
• Other possibilities: Hair loss, constipation or diarrhea, rash, tingling in fingers and toes, mouth sores, new cancers later on.
• Etoposide (new): 
• Likely: Nausea, vomiting, hair loss, weakness, lowered blood counts.
• Other possibilities: Decreased blood pressure, rash, mouth sores, finger/toe nails loosening from nail bed (AHH!), liver damage, new cancers later on.
• Topotecan (new): 
• Likely: Diarrhea, nausea, vomiting, lowered blood counts, fever, hair loss.
• Other possibilities: Headache, rash, mouth sores, chest pain, shaking chills, severe allergic reactions (always a possibility with any new drug).
• Erlotinib (new):  This is a new drug in the cancer treatment world.  The notes I have say it has been given to around 4,000 patients...not that many.  I am pretty sure this is the "experimental" part of this research study, to see if this particular drug has a better outcome for babies with brain tumors.  It is not exactly a chemo, but rather a drug that supports the chemo, I think.  Because it is new, long term effects are not known.
• Likely: Skin rash, diarrhea, nausea, vomiting, fatigue, bone pain.
• Other possibilities: Dry skin, headache, eye infections.

Other notable parts of the consent form include:

• This protocol continues to monitor for 5 years after treatment, with MRIs, physicals, blood work, etc.
• Our doctor would remove her from this study if a better treatment was discovered.
• "We cannot and do not guarantee or promise that you will receive any benefits from this study."  While this generally pertains to financial benefits, I can't help but see this as ominous.
• Other choices in treatment, including choosing no treatment, in which case, the disease will get worse.
• The study pays for the services, supplies, procedures and care associated with the study, but we are still responsible for routine care.  I am not sure how this breaks down with our insurance.  We'll never really know how much her full treatment costs, though, the sidebar total is getting pretty "impressive" (as the doctors like to call big things).

Seeing it all on paper is much more frightening than the day-to-day experience.  She's doing well, and it seems to be working, so I don't care what they say could happen.  We have put all our eggs in this basket, so to speak.  We have to believe it will work.

Today we find out if Cousin Orange-o is a Pink-o or Blue-o!  :-)  Lindi and Mike are going in for their 20 week ultrasound later today. 

Also, please keep the Nhu family in your thoughts.  Their 6 year old daughter was recently diagnosed with a brain tumor, which will be removed in surgery tomorrow by one of Scarlett's neurosurgeons.  They found our blog and we met yesterday to answer any questions we could.  They don't know yet what kind of tumor they are dealing with, so we can all hope that it is benign.

Heat Wave

Just as we were lamenting the lack of seasonal weather, we got hit with a heat wave.  It was too hot to stay in our house with no breeze, and it was much too hot to be outside, so I did the only thing I could think of: we went to the mall.  We met a friend (who also has a too-warm baby), window shopped till we dropped, then went back for more today.  

I realized I am not sure what to do with Scarlett in the heat.  Since she was born in October, we have had very little sun.  It takes some adjusting to my usual packing list of a jacket, blanket and extra socks.  I was so excited to finally dress her in her summer outfits that we have had since before she was born!  I thought she would grow out of them long before it got warm, but if there's one positive side to her slower growth, it's that we get a lot longer wear from her clothes.  Plus, holding a 15 pound heater against your already-sweaty skin is downright torture.  So, with her sun hat, glasses, 100 SPF sunscreen, stroller shade and a frosty drink for me, we are trying to enjoy the sunshine...on the walk from the parking lot to the door of the hospital and mall.  Hopefully we'll venture further soon.

Part of my delay in writing lately (besides the 80 degree room with the computer) was that we were at a hospital each day last week.  Labs on Monday and Friday; blood and platelets on Tuesday; MRI on Wednesday; Neurosurgeon on Thursday.  It was somewhat grueling, driving in and out each day, having her port accessed, waiting in the clinic, and taking in a lot of new information.

Now that communication has begun to flow between the Neuro-Oncology team at Lucile Packard and the Neurosurgery team in Oakland, the details of Scarlett's future cranioplasty (cranial reconstruction) surgery are under way.  While the neurosurgeon originally felt that sooner was better, oncology pointed out that the chemo will cause her bones, skin and other tissue to heal much more slowly.  She is also at risk for infection, which could compromise any procedures and would necessitate repeat surgery.  So, the surgery will not be done until she is finished with all the chemo, somewhere around 18 month old, next Spring.  

It's hard to fully capture the startling shape of Scarlett's head in a picture.  The bones shift throughout the day as gravity pulls more fluid through her shunt and out of her brain.

We learned that this procedure, while "cosmetic" (in that it will improve her appearance) it is not optional, and will be covered by insurance...whew.  Depending on what needs to happen, it could involve synthetic or even cadaver bone implants to help fill in and secure the cranial bones.  It is not nearly as invasive as her tumor resections (the dura layer around her brain would not be crossed), it will require several surgeries over a few weeks.  And, of course, a new shunt.

This was a huge pill to swallow, and we are struggling some with the idea of more surgery.  It is so hard on her, and will be even more difficult when she is older.  It is also difficult to look at such major procedures after our insurance changes; we had naively thought we were nearing the end of hospitalizations just in time, before co-pays and our payment responsibility may dramatically increase.  It may affect my ability to work next year, or at least require a very flexible, forgiving position for one or both of us.

But, as both sets of doctors confirm, we wouldn't want to leave it crooked if we could fix it.  The time to fix it is while she is young enough to forget it ever happened, and when we are most likely to have the best outcome.  She'll thank us when she's older and has a nice, round head.

Father's Day

We've had a quiet day, but everyone is happy.

8 Months

Scarlett is 8 months old today!  She is about 15 pounds, 4 oz. and 25 inches long.  She likes to watch Signing Time and Sesame Street while momma does the dishes.  She kicks anything that comes near her feet, and beginning to push back when we put any pressure on her feet.  She has one full tooth, and two others on their way through.  She still doesn't eat much in the way of solids (or formula, for that matter) but she is improving a little every day.  She gives the biggest, drooliest smiles and is generally happy most of the time.  Everyone has noticed how much more interactive she is lately, which I think comes from being home so much more than she has been in 6 months.

Rocking her new glasses and hat.

It has been 6 months since her brain tumor was discovered in December; 5 months since the tumor was officially removed.  She has had 8 surgeries, and about 90 days in the hospital.  We have come so far, yet have a long way to go.

Her MRI has officially been given the "all clear" by both neuro-oncology and neurosurgery!  No tumor!

Her right brain hemisphere has decompressed well and looks relatively normal now.  Her current shunt (her second) is over-draining, which is causing the bones of her skull to collapse inward.  While this does not bother her too much, her neurosurgeon has decided that it will need some attention - a few surgeries (including a third shunt) over two weeks later this summer.  The two teams will have to negotiate to find a good time - between chemo cycles but before she is one year old (bones heal better before one year).  While more surgery does not sound fun, we want to make sure we do everything we can now to ensure her life is as normal as possible when she is older.  

She begins the next round of chemo next week, so this weekend is our chance for a little fun - hopefully we can make it a nice Father's Day for Chris!