Monday, March 10, 2014

6 Months Post-Chemo

Scarlett had an MRI last week.  It was clear!  We didn't have too many concerns, but that doesn't mean much.  She's doing great, so we will wait another three months before we scan again.

We had to wait quite a while for her turn in the MRI, so daddy made sure to keep her entertained.


  

She is teetering on the edge of 30 pounds, and has grown just tall enough to need 2T and 3T clothes rather than 24 months.  The doctors are watching closely to see that she continues to grow, as children with such extensive tumors and treatment often do not grown appropriately.  So far, she's okay (still short for her age) but we are watching carefully.

We have noticed some strange episodes, and we are all pretty sure she is having seizures. This has come up several times, so it is not much to note, but this time I think she will need medication. Her doctors are not concerned, and have essentially been waiting for this. They know we don't want to give her medication unnecessarily, but the concern that these seizures may disrupt her cognitive development is mounting. We would rather give medicine twice a day than have her regress or be uncomfortable. 

A little medicine is minor for us, so we will see how it plays out over the next few months.  We are also going to be seeing an ENT specialist to see if they can give us any insight into Scarlett's swallowing difficulties.  We can only attack one concern at a time!

I found out this week that a piece I wrote about Scarlett will be published in a medical journal.  Narrative Inquiry in Bioethics is publishing a special edition all about parent experience with pediatric brain tumors.  My piece was chosen as one of the few to be included in the printed journal, so I am very proud!  I will share it as soon as it is officially out.

In my last post, I mentioned NickyBear, who entered hospice.  He passed away this weekend.  Another baby lost, another family shattered by brain cancer. 

Monday, February 17, 2014

Valentine's Day 2014

V-day has come and gone once again, and I feel like this year we really made progress.

To recap:
Feb. 14, 2010 - I found out I was pregnant.
Feb. 14 2011 - Scarlett's first dose of chemo.
Feb. 14, 2012 - Scarlett had surgery to place a feeding tube.
Feb. 14, 2013 - quiet...sitting at my parents' house.

Last year, we were doing well, but this year, we set a goal of being moved out by Valentine's Day...and we did it!

There was nothing too fancy about our Valentine's day - it was exhausting at school that day (me in the classroom with 25 sugared-up kindergarteners and Chris working in the muddy garden) so we were both happy to sit and enjoy a nice dinner at home with Scarlett.  I couldn't help myself from thinking about how much has happened in the last 4 years...in a way, we've come full-circle, with Scarlett doing so well and back in our own place.  I know better than to think it is complete - we're never out of the woods with this tumor - but we are back on track to feeling like we are making forward motion, and it feels GOOD!

We're all moved in to the new house now.  It's great - Scarlett has a playroom (that we share as an office and sewing room); we have a big kitchen that fits all the great stuff we have had in storage for almost two years.  A big garage for storage, a backyard to play and garden in - so much space!  We are still getting settled, but it's all going well so far.

We have been working on filling up this big house, since the combination of a much smaller previous home with the purge of moving into storage two years ago meant we had very few big pieces.  We couldn't get too wild, so we have limited ourselves to Craigslist, thrift stores and hand-me-downs.  We have done great so far - couch and loveseat from Craigslist for $75, rug from the thrift store for $30, and several small pieces from friends and family who are downsizing.  We even got a great rocking chair and entertainment center (which we are using as a coffee table for now) from a blog reader nearby (Thanks, Jamie!  Sorry again that Scarlett was so grumpy!)  We did get one big gift: my grandma wanted to make sure we had clean clothes (and appliances with warranties) so she bought us a new washer and dryer - but even those came from an outlet and were about half off!

Scarlett loves the new house, and has found all kinds of ways to be adventurous here.  Here newest game is to push the dining chairs up to the kitchen counters and climb up.  Luckily, the chairs make a terrible racket on the tile floor, so she is never very sneaky about it.  She is already making friends with neighbors as she walks laps around the block in her walker; she even made it most of the way around the lake across the street - it's about a mile around, so we were pretty impressed!

She has a new trick this weekend, too - she can now stand up from the floor with no support and take several steps.  Tonight, we counted 16 steps from daddy to momma!  We're going through the typical walking milestones at a snail's pace, but she's doing it!  Despite all the specialty gear, therapy and fancy shoes we have tried, I have decided that she is going to just have to learn the way other kids do - falling, practicing, and taking her own little risks - in her own time. She has a big job as flower girl in August, and I am getting more optimistic that she may just walk for it!

Her signing is blowing up, too - she's added signs for momma, daddy, water, home, Cosmo (our dog), socks, shoes and pear.  She has an approximated word for most signs, too.  The more we understand her, the less she has tantrums, so it is good for us all.

The first steps of her institutional deeming Medi-Cal (full-coverage insurance for certain special needs) set in, so she can finally get her new ankle braces and hearing aids, which have been withheld while we awaited the last several months of bureaucracy.  Now we are hoping the coverage is in full-swing before her MRI in early March.

Finally, yet another of our brain tumor friends is losing their battle.  Nicky suddenly began hospice this week after the return of his tumor.  He went through much of the same treatment as Scarlett as an infant, plus additional radiation and hyperbaric oxygen treatments for the resulting damage.  He has deteriorated very fast, and his family is now left to make him comfortable as the tumors take over.  I hate it, and it seems to be happening over and over and over lately.  We've lost so many kids in the last few months; something has to be done.

Thursday, January 23, 2014

New Chapter

There are some big changes in the air!

We're moving!  We've been living with my parents for about 18 months.  It's been great to have somewhere safe and dependable to live while we recovered in many ways from the stress of Scarlett's diagnosis and treatment.  We started to casually look at available rentals in the area to get an idea of what might be out there, and the perfect place popped up!  We signed a lease, and we'll be moving February 1.  It's a very nice house is a great neighborhood; we decided that we could not risk the hard-fought IEP, so we had to stay in the same city (and IEP is managed by a school district, and would have to be renegotiated with a new school district).  We'll have plenty of space, a backyard for Scarlett and Cosmo to play and a lake across the street.
Keeping a non-eater occupied in a restaurant...sock hands!
Of course, moving is it's own brand of stress, but we're trying to stay focused on one small step at a time.  It's a huge change financially, so we have to be careful.  It will be tricky for a few months while we adjust, but we have a plan.  We are looking for a few things we don't have - a couch, washer and dryer are first on my mind - on Craigslist, in thrift stores and garage sales, and everything else will come together eventually.  Most of what we have has been in storage for a year and a half, so it will be like Christmas all over again as we unpack!

We're very excited, and feel like moving is the end of this recovery chapter.  When we moved in to my parents house, Scarlett was doing well, and we thought we were completely finished with the stress of chemo...just to have more tumor found a few months later.  Our recuperation took a bit longer than expected, but we still feel like we have made good progress in finding stability financially, medically and emotionally.  I don't know what will happen next - we're always wary of the chance Scarlett could relapse again - but we will just keep managing it as it comes.

Cutest protest nap in the doorway after a tantrum.
It's a new phase for Scarlett, too.  Her little body is still recovering, and we are all learning how to manage the long-term effects of the treatments she has endured.  Over the last month, we have been dealing with her immune system.  Everyone in our house has been sick, but she got a nasty infection that has lasted for several weeks.  She is on her second round of antibiotics with eye drops after both her ears and eyes were goopy.  She seems to catch everything that walks by her.  Despite the runny nose and all, she takes it like a champ and doesn't let it slow her down.

We're seeing her adjust more and more to life off treatment.  She is learning signs all the time - sh'es regularly asking for her iPad, saying "home", greeting everyone who comes in the room (over and over again!) and trying new signs she sees on Signing Time.  
Evidence of her pushing a chair to where she wants, climbing up and playing with the light switches and whatever she finds on the counter!
We're happily packing, planning and settling in to life.  We're busy like always, and still knee-deep in concerns, particularly around Scarlett's medical coverage that is in limbo right now.  We keep moving forward, and hoping that things will settle themselves if we continue to explore all avenues.

Tuesday, December 31, 2013

Scarlett's Year in Review

This year was full of joy, challenges and victories for Scarlett.

January
Scarlett began chemo for the second time in her little life.  She also learned to crawl out the dog door!
February
Scarlett was the NEGU Kid of the Week for the Jessie Rees Foundation!
March
A clean MRI - yea!
April
Scarlett started walking with the help of her walker.  It took her about 2 minutes to figure out how to change directions, go up driveways and over edges.
May
We went to camp to spend the weekend with other families of brain tumor kids.  We love it!  Scarlett lost her last pacifier, so we said goodbye to them!
June
Scarlett had to go to the ER after a night of vomiting.  Thankfully, it was just a stomach virus.  Then, we went on vacation!  We got to meet two other families with kids who have battled the same tumor.  We had a great day at the San Diego Zoo
July
Scarlett became an adept climber.  She started to get into everything, climbing onto chairs, tables and counters.  She participated in her second year of Relay for Life, and was awarded "Most Inspirational Relayer"
August
No mo' chemo!  Scarlett finished chemo with no sign of tumor.  She started her second year of preschool.  She also got glasses, which she took approximately 2 weeks to break.
September
We went camping twice in September, once with other brain tumor families and once with Scarlett's school.  Both were wonderful, and we learned a lot with both groups.
October
Scarlett turned 3!  We hosted our third annual blood drive to celebrate, collecting another 70 pints of blood for Stanford Blood Center.  We also secured her school needs through an IEP after months of preparation.  She had another clear MRI - yea!!
November
We made huge strides in our continuing quest for support services for Scarlett, including a handicap placard, respite care and the next steps toward long-term insurance.
December
Scarlett made the move to a toddler bed this month.  She is working hard to walk, sign, talk and eat on her own.

Thank you to all who have been following this girl in 2013 (and beyond).  I know I don't post as much anymore, but we still deeply appreciate the support and cheering that comes from our friends here.  I hope everyone has a happy new year!  Bring it on, 2014!

Wednesday, December 25, 2013

Christmas 2013


Helping daddy cook dinner
Suspicious of Santa
With cousin Caleb
Christmas in the Park




Breaking into the stockings
New doll house from Santa, complete with furniture, doll family, Christmas lights and ghost in the attic...
...and grandpa's addition of a "fragile" leg lamp!



The TV fire replaced the real one since it we've been on no-burn days for weeks.


Boots with handles to put them on by herself!
Merry Christmas!

Thursday, December 12, 2013

Tumor-versary

Scarlett has been tumor free for a whole year!  One year ago today, the mystery spot was removed.  That mystery spot was soon discovered to be a regrowth of the nasty original tumor.  One year ago, we were faced with making difficult choices about continuing treatment, further brain damage and an unknown future.

12-12-12
In the last 12 months, Scarlett has endured 16 chemotherapy IV infusions, 56 doses of oral chemo, four MRIs, weekly physical, occupational and speech therapy and the insertion and many, many pokes into a port catheter.

Today, Scarlett went to school, and then spent the afternoon giggling with her cousin.  What a difference a year makes.

Next week is the third anniversary of the real beginning of Scarlett's battle with brain cancer.  It's a miracle how far we have come.  

While we celebrate our successes, others are grieving or preparing for their own children to leave this world from this disease.  My heart is crunched each time I see the posts from a mother planning her child's funeral.  Please keep Lilee and Phoebe's families in mind as the have their first Christmas without their little girls, and with Abby's family, who are watching their daughter's last days.

Sign the petition to make childhood cancer research funding a priority of the US Congress.

Thursday, December 5, 2013

3 Months Post-Chemo

Scarlett has now been off chemo for three months.  She is feeling pretty good, and as busy as ever.  Today she had her first visit to the regular pediatrician in more than a year.  Officially, it was her 3 year well check, but really, it was the right time to go in to begin regular check ups with the regular doctor.

She is right at 30 pounds (that's about 4 pounds gained since August - that's what no daily puke will do!)  We're actually going to be backing off some calories (we've been enriching her meals with coconut oil for several months now) because she's gaining weight much faster than she is getting taller.  It's a balancing act for a kid who can't really monitor her own hunger.

She's had a really runny nose and a rash on her face for several weeks.  Since any fever would put her in the ER (because of her port - any possible infection needs to be monitored closely) she is starting a brief course of antibiotics to help knock out anything that might be lingering.

She is also starting her vaccinations for the third time.  Each time she has started, she has had to go through chemo, which means she needs to be vaccinated again.  We don't want to risk her getting an infection that will run rampant in her still-compromised system (especially with so many un-vaccinated kids around these days.)  Hopefully these are the last first vaccinations she will need!

We're still wading through the dark and murky waters of social services.  We've had a few wins, but many things are still in progress.
  • Scarlett got a handicap placard for us to use when driving with her in the car.  We knew we could get one a while ago, but waited.  We didn't really need it and did not want to deal with anyone's commentary when they see us using it with a seemingly normal family.   I've seen many families like ours get nasty notes on their windshields by people who make assumptions based on what they see.  It's in the car if we need it - and the bigger she gets, the more we might.
  • We got approved for respite care.  This is a service provided through our county Regional Center.  Now that Scarlett is 3, she has been moved from the Early Intervention program to the long-term disability program.  She qualifies for respite hours now, since she has a qualifying diagnosis (cerebral palsy, on paper) and requires more care than a typical 3 year old.  We interview a care provider tomorrow, who will hopefully begin coming to give Chris a break some afternoons while I am at work.
  • We have been getting visits from a deaf family mentor.  She is a deaf woman, and she is just here to help, sign with us and chat.  It's great! Chris gets a lot of signing practice at Scarlett's school each day, but I don't get to practice nearly enough.  Since the only free time we have is dinner time, we cook, eat and sign together.
  • A speech therapy student, conveniently the niece of Scarlett's school director, has volunteered t come work with Scarlett to give herself some experience.  She plays with Scarlett for an hour, giving Chris another much-needed break and Scarlett yet another opportunity to work on some speech goals.
  • We're in the process of getting In Home Supportive Services (IHSS).  This is a payment to Chris as the primary caregiver.  It is another county-supported service, and is intended for people who would otherwise need to be in a medical facility to receive the level of care they require.  Other people might pay a nurse or caregiver, and we're lucky to be able to have Chris able to be this person.  He will be officially employed (by Scarlett!) and submit a time card for the services he provides that are outside the "normal" childcare range - including tube feeding, giving medications,  diapering, dressing, lifting/moving/positioning and basically caring for her. It will be a huge help in making our decision to have him home with her full time viable for as long as we need to.
Chris spends most of his time scheduling all the paperwork, phone calls, appointments and meetings.  It adds a higher level of mania to our lives, but we feel like every opportunity we can get for her is a benefit.  And hopefully, once things are set, we can stop dealing with it all for a while - it will just work.
 
On the other hand, her state medical insurance was cancelled.  This is incredibly frustrating.  We worked for months to circumvent this problem, and tried to have everything in place for continued coverage, but a letter was delayed, a doctor went on vacation, and now it's in a bureaucratic mess.  it took months, but we got the right letter with the right diagnosis that qualifies her for institutional deeming, or continued Medi-Cal, outside our income.  This all depends on the Regional Center, which must provide one billable service in order to approve her need for institutional deeming, hence the new respite hours. This seems crazy to me - we have to have something else on top of what we need just to check a box on the paperwork - but I'll take it if it makes everything work the way it is supposed to.

Now, until the paperwork goes through, she can't have new hearing aid ear molds, and we are holding our breath that she doesn't get really sick (we're headed into the longest stretch outside the hospital EVER, so chances are slim, to say the least).  Luckily, we still have private medical insurance which will cover the basics without too much damage, and a meeting tomorrow with the worker who is helping coordinate the transition.

The anniversaries of her diagnosis, surgeries, and start of all this chaos is coming over the next weeks.  It's a tense time for me, with so many memories and dredged up fears.  This may be the first time we haven't had a sick or recently-operated-upon child for Christmas, and I am looking forward to that!