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!

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.

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!

Turkey Day

Scarlett had a great Turkey Day. 

First, she watched the Macy's parade.

She's practicing her newest trick - pushing baskets and boxes around to use them as climbing tools.

 Then we went to Auntie Lindi and Uncle Mike's, where we ate and ate and ate.  We tried to catch one picture of Scarlett and her cousin Caleb in their turkey shirts I made.

Then today, we went to pick a Christmas tree.  We've never gotten one so early, but the coming weeks are busy, and it just felt like a good day.

I dressed her for winter, despite it being nearly 70 degrees and bright sun!

Hope everyone had a great Thanksgiving!
 

Thankful

Everyone is posting on Facebook all their daily thanks.  I am not organized to do it every day, but I am so grateful for so many things.  In no particular order...

I am thankful for my family.  They are pretty wild, but they are there when we need them, and help us take care of Scarlett.

I am thankful that we have somewhere comfortable to live.  It's not our ideal situation, living with my parents, but we have everything we need.

I am thankful that I am relatively healthy.  

I am thankful that I have a job I enjoy.  It's hard, and I am spending a lot of personal time to make it happen, but it is fun and rewarding, too.  Starting each morning with kids showing me their favorite superhero shirts and letters they wrote for me makes me smile.

I am thankful for coffee.

I am thankful for this blog.  I was reading through the first several months of posts last night, and it brings back so many memories.  There are some I wish I had never had to make, but I am glad to have had the presence of mind to write it all down so that I can look back and remember how, even when things looked grim, we had hope.

I am thankful for little outings for fun.  We don't get many, but I look forward to them.

I am thankful for doctors.  I can't imagine how we would have make it through without the doctors (and nurses, social workers and other hospital staff) that have been a part of Scarlett's and our lives.

I am thankful for the fluffy little dog curled up next to me.

I am thankful for DVR for letting me watch my favorite TV when I want without commercials.

I am thankful for FaceTime that let me see Scarlett's little giggles while she was visiting her grandma this weekend.  Her kissing the phone just melted me.

I am thankful for music. 

I am thankful that there are people fighting for better care for kids with cancer.  One day, I hope to be thankful for a cure.

I am thankful for my nephew Caleb.  He just turned two, and he loves his cousin.  She may never have a sibling, but she will grow up with a cousin she loves.  Today we are having a birthday party for him, and he will be loud, he will make a mess, but he will give Scarlett kisses and she will be so happy to see him.

I am thankful for dessert.

I am thankful for my husband who is working so hard to handle the day-to-day details of our life.  It is a huge task and he is attacking it all, on top of taking care of one very lively little girl.  Tomorrow is his birthday, and he will spend it sitting in traffic, then on the phone trying to sort out the latest in medical insurance chaos.

I am thankful that holidays are coming.  It's a very emotional time for me, with the anniversary of Scarlett's diagnosis, but I look forward to it and all the traditions that Scarlett will get to be a part of.

Boo!

Happy Halloween!

Scarlett's MRI was clear!  Time to party!

Scanxiety

Scarlett's next MRI is tomorrow, and I am having the worst case of scanxiety yet.

I lost count of Scarlett's MRI's years ago - 15? 20?  Somewhere around there, at least.  I remember the first one, but after that, they all begin to blur.  However, the sick feeling in the pit of my stomach that comes with it is a clear memory.  It comes with racing thoughts of what will happen next, imagining how we will her the next news, grief and old memories, sadness and fear. 

That's scanxiety.  Every parent of a kid with a brain tumor has it, as we have all learned what cn happen after a bad scan.  Some have learned to manage it, several years down the road.  As scans get further and further apart, we hear it gets easier.  Our doctors told us that they see people begin to relax more when they hit the once-a-year scans.  I can't even imagine waiting that long to know; we've been living scan-to-scan for so long now, I am not sure how to go about it any other way.

The last two months off chemo have been great.  Scarlett feels better - no more puking, much more tolerant of varied foods and regular meals.  She is more interested in food, in playing and in other people.  She is doing well at both of her schools, and is being her normal toddler self at home.  We knew that a scan was due - the last was at the end of July - but we hadn't heard about an exact date.  Chris was going to call Thursday.

That happened to be the same day that we got a call prompting us for the already-scheduled scan.  Not sure how we missed it, or if we ever actually knew the date, but here it is.  The second I heard the voicemail, I got chills.  I felt sick.  I was at a break in a day of training for work, and the rest of the day became a blur.  I went from feeling fine to being panicked.

And now, I am finding things to make me worry more.  Scarlett hasn't been walking without her walker in a few weeks.  Is something interfering with her motor skills?  She has had some major meltdowns.  Is she having headaches?  The small logical part of my brain (whatever is left there) tells me that there is nothing, but the grief-stricken, traumatized, emotional-mom majority of me cannot stop worrying.

We tried to get out and give ourselves a break over the weekend.  We had dinner out, saw a good movie, but on the way home, my thoughts wandered and there I was, in panic-mode.  Chris, who is usually the more level-headed of the two of us, heard my concerns and couldn't stop himself from joining in.  By the time we got home, we were exhausted and felt worse than when we left.

It catches me off guard, still.  I keep expecting to feel prepared, ready for the scan to be clean, like it usually is.  Or it was, until the damn tumor came back.  We started to feel comfortable, like it as going away, until this time last year, when it reared its ugly little head again.  Now, when we feel like we are over-reacting, we only have to tell ourselves that it already came back once, no reason it can't again, and worry floods in.

I think the difference this time is the end of chemo.  It's the first scan after stopping chemo.  As much as I hate those awful drugs, they give me a confidence.  Without the drugs, she's open, exposed.

I hate this part.  I hate the feeling that this will never be over, or that the worst is ahead.  I see families like ours who are years out with clean scans, and feel like they have mostly all figured out a way to move on.  We haven't been able to do that yet, and it is eating at me.  We are still in recovery mode.  Our whole life - our jobs, our finances, our marriage, everything - are still bruised and beaten by this tumor, and are trying to come back.  Every scan holds the chance that we go back to the beginning yet again.

We won't hear real results until Thursday when we visit the clinic.  Scarlett will be going for labs in costume (which I just finished making!) and we have plans for trick-or-treating after.  Until then, I keep trying to breathe, moving forward one step at a time.