New Skill

Today Chris and I added a new skill to our home nursing repertoire: NG tube placement.  Poor baby coughed it up yet again this morning, so we decided that it was time we learned to replace it ourselves.  Her gag reflex seems stronger and is forcing it out, and we still need it to keep her hydrated, fed and medicated.  It is relatively easy and safe to do at home, and it saves us a trip to the hospital or emergency room.

Despite all of the things I have already had to learn (subcutaneous injections, wound care, bolus feedings, medication administration, port accessing, etc.), I have avoided this particular lesson for quite a while.  There is no part of forcing a tube through her nose to her stomach that excites me.  It is a two-parent job - one to hold her down, the other to feed the tube in.  At least we don't have to do it alone.

Luckily, it is not as hard as it seems.  My biggest concern is accidentally going into the lungs rather than the stomach.  The nurse basically said, yes, it can happen; if she turns blue and can't breath, pull the tube out and try again.  We always check the placement of the tube before feeding if it looks like it has moved by pushing in a small amount of air and listening for it in her stomach with a stethoscope.  Like my sister commented the other day, Scarlett's room is just a treasure trove of medical equipment at this point - stethoscopes, saline, syringes, sharps box, tape, adhesive remover, alcohol wipes and surgical scissors mixed in with the wipes and diaper cream. 

Despite the daily puke, Scarlett is starting to feel better, so this just fuels our eagerness to transition her back to some kind of normal eating schedule.  She currently eats very little formula during the day (and no purees while she is so gaggy), then gets pump feedings overnight, since she is less likely to throw up when she is sleeping.  Our goal is to begin increasing the amount she gets during the day - as much through bottles as we can, then with syringes - to give her that "full" feeling again, then gradually taper off the night feedings.  Hopefully this works - it will likely take a few weeks to months at least, so we are hoping we can start soon.

It's just another strange day in parenting for Chris and me. 

Oops!

Notice anything different?

No NG tube!  We haven't seen her face without it since March.  Unfortunately, the tube came up this morning when she threw up.  It came right out of her mouth, and I had to pull it back out through her nose...gross!  Poor girl!  She still needs it for feeding and medication, so we had it replaced this afternoon, but I had to share a picture of both cheeks sans tape!

She is doing well, though is obviously not 100% yet.  She is back to getting daily injections at home to bring her white blood cell counts back up, and will likely need a blood transfusion by the end of the week.  She saw her doctor today, and when he picked her up, his comment was, "She's getting dense!"

Finito!

We're home, eating burritos for dinner with a slightly dazed but content baby.  Glad to be done!

Round 6

Yesterday Scarlett was admitted for Round 6 of chemo.  This is the last round of Consolidation.  It is the last time we have to be hospitalized.

YEA!!!!

I cannot believe we have made it this far.  When we started looking at the treatment plan in December, I never thought I would survive so much time in the hospital, and I couldn't imagine how Scarlett could grow and develop when she was spending so much time in a tiny room.  I am happy to say that we have all survived, and she has thrived!  I am still knocking on wood...there are still a million reasons she could need to be hospitalized, but nothing is scheduled, so we're holding on to hope that we can stay OUT!

We will miss our wonderful nurses and doctors in the inpatient oncology unit.  They are so patient, helpful and understanding of the chaos parents endure.  They have changed diapers, wiped up vomit, let us practice injections on them, brought me tissues and given me and Scarlett hugs when we needed them.  I believe that the great care she has received in the hospital is part of the reason she has fared so well through these incredibly toxic treatments.  Most of all, we will miss Jen, the nurse practitioner who has followed Scarlett through all her inpatient chemo, who called in special orders for her when she was on other departments, who checked in on her labs when she snuck in on weekends, and made sure Chris and I felt confidant in caring for her at home.  We are sad to leave her domain, but hopefully, we won't ever have to be back for IV chemo again!!

As great as this is, it only marks the midpoint of chemo for Scarlett.  She still has 6 months of chemo medications to take, but they will be oral and can be given at home.  It still seems like such a long way to go, but the last 6 months seem to have flown by (in retrospect only...I remember how very long some of those days were!)  I can't wait for that day when we can say No Mo' Chemo!

So far this has not been our best round, but it seems we have figured out the medication schedule that works for her nausea and she is eating better and throwing up less.  We should be discharged tomorrow.

Scarlett's Room

A few weeks ago, Scarlett got a big present from her Grandma (my mom):

 

 A few months ago, She asked our friend Cindy Young if she could make a quilt for Scarlett's mermaid-themed room. And did she ever!

  

It seems that Cindy's quilting group went to town on the design we found and months later, this piece was delivered.  It reaches from just behind Scarlett's crib to the very tip top of our 9 foot ceilings.  It is incredibly detailed with mermaids lounging on coral, a dolphin, seahorse, turtle and a myriad of fish.  Each layer has different textures that make the water look as though it is in motion.  Every creature has an different expression or personality.  And it matches everything we had already done so well, it looks like it was always there.

When we found out we were having a girl last year, we immediately began dreaming up a fun bedroom.  I had always thought an underwater theme would be fun, but when I saw this mermaid print, my mind was set (and I promised Chris that our next child could have the outer space room that he wanted).  I started collecting ideas and we have been working on it ever since.  Our house has very colorful walls (much to our landlord's chagrin - sorry dad!) so the turquoise was a perfect fit.

This print used to be over the crib.  The lamp was in our living room for years.  Scarlett (with some help from me...) made the bunny when Build-A-Bear came to the oncology department a few months ago.

The tiny key hooks were too cute to pass up, even if they can't hold much.  The purse was from Gymboree...I waited months for it (and the outfit that matched!) to go on sale!

Last year, my kindergarten class collected books for us to begin a baby library, which we are still working our way through.  We have a strange collection of Mr. Potato Heads, so when we saw a mermaid at Walgreens, we had to have it.  And my old iPod found a home here, too!

Chris' favorite part of the room are these jellyfish we hung in the corner.

Thank you to Cindy and the wonderful quilters who helped to make the finishing touch to Scarlett's room!  We're hoping she can enjoy this room for a few years (or until she decides she only likes ballerinas or monster trucks or black walls or something!).

9 Months!

Scarlett Grace is 9 months old today!  She is about 15 lbs. 13 oz. and 27 inches.  She's still in 3-6 month clothes, but we're moving up soon.  She has 3 teeth (all on the bottom) and another on the way.  She has made huge developmental advancements in the last few weeks, but most are subtle.  She grabs toys purposefully and inspects them.  She is eating purees twice a day.  She is bouncing on her chubby little legs whenever she gets a chance.  Her hearing aids seem to have given her a new appreciation of music (which she liked when she was very young), and any musical toys or singing gets her doing a funny bouncy baby dance.  She likes to run her fingers through Cosmo's fur and watch our cats skulk around the house.  She is constantly "talking" to us with grunts, coos, hums and howls.  She smiles all the time (except when she sees a camera!) and enjoys being passed around to different arms for a new perspective.

Her favorite toy - she hasn't quite figured out how to move, but she LOVES the musical entertainment.

Tummy time!

 We have passed a huge milestone for me:  Scarlett has more months behind her than surgeries!!!  We had almost made it to this point at 6 months, when she had 3 more that week.  Her doctors and I have been crossing our fingers that we would make it!

It has been 7 months since she was diagnosed with brain cancer.  7 months ago, sitting in a small conference room, a world-renowned doctor, who everyone told us was "the best",  told us we may have a few weeks to a few months with her, and explained in detail how our baby would die. Never has there been a more poignant example of the need for a second opinion!

Hearing Aids

Scarlett got her long-awaited hearing aids this week.  We were excited to see if there was any change in her responsiveness, but also nervous about battling her to wear them.  We were pleasantly surprised that she doesn't seem to mind them at all!

As soon as the audiologist put the first one in, Scarlett gave her the biggest smile!  Here's the second one going in (there is a 6 second delay as they start up, and you can see as soon as she can hear us.)

So far, she tolerates them very well.  We are running into come problems with the left side, as her head tilts significantly still and she gets a lot of feedback noise from her ear hitting her shoulder.  However, the sound doe not seem to bother her, just us.  She wears them as much as possible when she is awake.

She is much more interested in her musical toys than last week!

 Hearing aids are a big responsibility for parents.  I want to make sure she is wearing them as much as possible so that she is hearing us have conversations, ambient noises and whatever is happening around her.  However, they need to come out when she is asleep so that the whistling sound they make when she lays on them does not wake her up.  This means a lot of in and out, making sure we always put them in a safe place.  They are tiny and I can imagine they could get lost easily.

 Losing them is really just not an option:  our insurance pays for them the first time, but we have to pay to replace them.  They are each about $2200, plus an extra $200 for the inner ear molds (which have to be redone every few months as she grows).  This is simply not something we can afford, so we are extra cautious about where they land.

Fortunately, the company that makes them is well aware of the investment parents are making.  They came with a tote bag full of accessories for cleaning, storing, maintaining and testing.  There are also stickers for decorating and a "leash" for attaching both hearing aids to her shirt (much like a pacifier clip).  She has yet to pull at them or knock them out, so we are safe so far.

It is great to see her more engaged in what is happening around her.  This morning, she turned her head and looked when I opened the door - this is a huge improvement for her!  She is quite vocal with her baby babbling, she we are interested to see if the hearing aids bring about a few actual words.  Hopefully I'll have my video camera ready!

She is having yet another blood transfusion today, so I am off to pack up for a day at the hospital.  Tomorrow she is nine months old!

Progress

I have been making some good progress with social services.  It took us over a week to straighten out our phone line problem (something was crossed in the wall, only giving out a busy signal.  The phone company was going to charge us an arm and a leg to fix it, so my dad came and fixed it in a few minutes).  I had to call all of the offices and social workers to make sure they had my cell phone number and e-mail. 

• Social Security is in progress.  The agent started off very rude, but as she began to hear all of Scarlett's medications, hospitalizations and issues, she softened and made sure we had everything set to be approved as soon as possible. 

• The Medi-Cal (California state medical insurance) office was not a place I would want to spend much time, but the social worker there was very nice, and also promised to get things in motion as soon as possible.

• California Children's Services (CCS) had the gall to deny our claim last week; their reason: her medical records did not describe a neurological condition that qualified for services.  Their doctor deemed her delays as minor and only related to being hospitalized so much; this without ever seeing her.  After leaving messages on every voice mail I could access, I finally got a call back from a supervisor who explained they needed more documentation...so I have since inundated them with documentation.  A letter from her doctor stating that "Scarlett has ongoing neurologic problems originating from a massive congenital brain tumor" and "it is clear that these are neurologic in origin and in fact she does meet all criteria"(ha!)...physical therapy, occupational therapy and speech evaluations...a chart of every single hospitalization and appointment she has had since diagnosis in December.  After all of this, they are still requiring more, so we will continue to battle this.

•  We finally were able to make an appointment for evaluation with the Early Start regional center...in August.  I called them May 22.  They can't see her until August because their doctor is on vacation.  Apparently there is only one doctor to evaluate all the kids with developmental delays in our entire county of over 1 million residents...and I have a feeling this is not a doctor familiar with "massive congenital brain tumors".
•  I have yet to hear back from the school district about hearing.  From my experience, they have a limited amount of time to respond, so I think I will have to call and remind them of this.

Thank you to everyone who offered their experience and advice with this last week.   I have learned a lot already, and will share some tips in a future post that I hope will help others in the future.

That's what I have accomplished this week, in addition to an additional surprise platelet transfusion for Scarlett, new hearing aids (more on that later!) and her first therapy appointments, as well as getting my flat tire fixed, wheels balanced and ordering a windshield repair (rocks on the freeway on the way to therapy).  I feel like a telemarketer, making call after call to people who are not entirely happy to hear from me.  However, I took a few minutes to make some homemade ice cream this afternoon, so I feel a little better - ice cream fixes most everything!
 
 This week's request:  does anyone have any information on hosting a blood drive?  Say, in honor of a child with cancer who has has been transfused with more than her share?  Email scarlettgrace2010@gmail.com if you know how we might go about doing this.

Anniversary

Seven years ago today, we threw caution to the wind and were married.  We had no money, were still in school and had big dreams of what might lie ahead.  It's been a long road, and we aren't in a very different position than we were then, but we are still as much in love as were were that day.  Everyone thought we were crazy (and they still might!) but we are happy to have proved them wrong (or at least having learned to ignore them and have fun anyway!) 

Yesterday we drove to Healdsburg in the famous "Wine Country" and enjoyed some wine tasting, tapas and time together away from the piles of bills, phone calls and stress of our daily reality.  The weather was beautiful, and we had a great day.  It was the longest we have ever left Scarlett, and she was fine (though I think my sister and mom were pretty wiped out!)  We're so lucky to live so close to such great places to visit - wine tasting is great because it feels fancy, but at many wineries, it's free!  We did a whole day out with 3 wineries and a delicious lunch, a bottle of one of the wines we liked most and some other treats for under $100. 

It was a great recharge for the upcoming week, where Scarlett gets her new hearing aids, we continue the fight for social services and maybe finally get our phone fixed!

Hectic Week

This has been yet another busy week for Scarlett and me.  

On Monday, Scarlett enjoyed her first fireworks.  We weren't sure what she would do - cry? sleep? - but she watched the bright colors and flashes calmly from her grandma's lap.  She stayed up extra late to watch the entire display and didn't fuss at all.  She's a party animal!

On Tuesday, we went for her regular labs, knowing she was likely needing a blood transfusion.  I could see she was pale and was bruising easily.  She had gray circles under her eyes and was easily tired, but seemed stable, so I didn't worry too much.  Little did I know she was at the lowest number she has ever hit.  Last month, nurses were frantically calling and chasing us through the hospital for platelets at 10,000; this time she was at 2,000.  They were so low, the lab called up to the clinic to tell the doctors it was an emergency.  A nurse came into the exam room with a bright pink post-it for the doctor to get things in motion as quickly as possible for an emergency transfusion.  

Despite the critical numbers, Scarlett was as perky as ever.  She had a rash on her legs from low platelets, and bruises from that morning's diaper changes, but she was smiling and kicking.  The doctor said that if she hadn't seen the lab results, she never would have guessed the numbers were so low.  There weren't initially enough beds, so she was almost sent to the ER, but luckily her nurse friends in the clinic worked it out and got us a comfy spot.  Because she was so low, they needed to run the blood extra slow to not upset her heart (yikes!) so we ended up being at the hospital for just over 10 hours.  Because Scarlett has had allergic reactions to blood products (both red blood cells and platelets) a few times, she gets Benadryl and Tylenol to avoid any reactions.  This makes her sleep through most all of the procedure.  As soon as the blood was running in, she turned a rosy pink and the gray circles went away.  Since she had had such a long nap during the day, she stayed up extra extra late that night because she felt so good! 

We didn't have much time to recover, because we had physical therapy and speech therapy evaluations Wednesday morning.  We found out that the therapists we are now seeing alsowork at Children's Hospital Oakland, where Scarlett's big surgeries were, and had heard all about her a while back.  When they heard a baby named Scarlett was coming to them, they were excited to get to see her again!  She was a trooper for both evaluations, showing off her newest tricks and patiently allowing the therapists to hold her and play with her.  After that, we decided to stop at the county fair, since we had gotten free tickets a few weeks ago.  Chris and I ate all kinds of greasy fair food (even some alligator on a stick for Chris!) and wandered through the air conditioned exhibits.  It was about 100 degrees, so AC and ice cream were the only way to go!  Scarlett slept in the stroller the whole time - the heat does not agree with her!

Today, we were back at the therapy clinic for an occupational therapy evaluation.  Scarlett was not nearly as agreeable this time, but I think the therapist still got a reasonable picture of what she is doing.  As expected, Scarlett is scoring very low on the standardized gross motor and fine motor tests, as well as with receptive language.  I think they were ready for us to argue with them, or try to prove how much more she could do, but we are just glad that someone is going to help us work on these issues.  The therapists are all developing plans for treatment and ideas for Chris and I to work on at home, but they gave us some quick tips, too.  

• Physical:  Work on turning head to right and holding in center.  Encourage her to play on her tummy and roll side to side whenever possible, and use routine opportunities, like diaper changes, to practice.

• Occupational:  Work on grabbing toys and bringing them to the mouth or face.  She seems to have an oral aversion (very common for chemo babies, but not a great thing) so experiment with different textures and sensations around her mouth and face.  

• Speech:  Practice pointing to objects like pictures, toys and body parts.  Model consonant sounds with our mouths, letting her feel and see how we are making the sounds.  Continue to work on a few key signs to help her begin to communicate what she wants and needs (we are working on mommy, daddy, eat, milk, more, all done).

It's a lot to work on, but we needed a concrete list of things to focus on, so it is very helpful.  Next week we will have the one (and only, so far) session each that our insurance has approved.  We're hoping the evaluations encourage more approvals...

Luckily, we got to end today with a fun play date with my friend Lisa and her daughter Alanna.  Lisa and I have been friends since junior high, and our babies are just 8 weeks apart (Alanna was only one week old when Scarlett was diagnosed, so we haven't visited much).  Alanna and Scarlett and just discovering that the other exists, so it is pretty funny to see them climb all over each other (Alanna is the climber, Scarlett the jungle gym) and play with each other.  Hopefully we will catch a picture of them soon!

Tomorrow, I am wrapping up the week with a flurry of appointments: 

• 9:45am - Social Security office
• Noon - blood work
• 4:00pm - phone repair (of course, as I am waiting for all the phone calls to be returned, our phone mysteriously died!!)

It's been a wild week, but Saturday is my reward - it's our anniversary!

Happy 4th of July!!

Have a fun and safe holiday!

Love, Scarlett, Brandi and Chris

In the Pool

Today, Auntie Lindi was visiting.  After a freak rainstorm on Tuesday, it has begun to heat up again and she does not like to spend the day in her hot house (now she knows how I felt so pregnant last summer!)  By late afternoon, we were all hot and needed some fresh air, so we decided to take Scarlett swimming in the complex pool.  She was in a  great mood, so we thought it would be fun. 

By the time we got her into a swim diaper, suit, hat, glasses and sunscreen, she was less happy.  She started to cry as we walked down the block to the pool.  She was wary of the cold water and splashing neighbors, and fussed every time Chris moved.  After about 5 minutes in the water, she was completely asleep.  Luckily, my trigger finger was fast and I got a few pictures of her before she napped in a towel in the shade.

Social Services

This week has been lovely.  Scarlett has been feeling great!  She has not thrown up at all, and she is playing and babbling all day long.  We kept busy with her regular appointments (just two this week), a play date, and meeting one of our blog readers (Hi Debbie!)  If this is anything like what the next few months will be like, I can get on board with that!

The dark side of my week has been paperwork.  I am drowning in a sea of forms from the dark and endless world of social services.  It is the most complicated system I have ever encountered, especially when you consider that it is designed for people who are struggling with whatever issues qualify them for the services.  I have made calls, phone interviews, online requests and sent in documents.  I have copied, scanned, faxed and ordered.  I am frustrated, tired and not sure if it is even worth it.  However, we are now in a position where we must find additional aid to support Scarlett's increasing needs, or we will be bankrupt and she won't be making the progress she should.  Here's a smattering of what I have done so far:

1.  Social Security:  I have applied for Supplemental Security Income (SSI) for Scarlett.  She is considered disabled, so she qualifies for this as long as our income falls below the incredibly low threshold (which sadly, it does now that I am not working).  We have been told that this is the "gatekeeper" of services, and once we can get approved for SSI, the other services will fall in line much easier.  However, I did not know the asset limit when I called last week, so thanks to our scrimping and saving, we were over the limit by $250.  If I would have paid one hospital bill before calling, we would have qualified.  So, I get to call back in July.

2.  California Children's Services:  CCS is for children in CA with disabilities.  It provides physical therapy, occupational therapy and other services to all disabled children, and other services like hearing aids and speech to those who qualify financially for additional assistance.  We didn't qualify for assistance with her hearing aids, but our insurance picked that up, so we didn't push the issue...and then we heard that the PT/OT services were not income dependent.  That meant calling again and being re-interviewed, and then being told the social worker we have been assigned to is out of the office, so to wait for a call.  That was last week, and I haven't heard anything.

3.  Medi-Cal:  California State medical care assistance. We have to qualify for this to get help from CCS.  Their application online was so complicated, I messed up one field, which delayed the process.  Then I got a packet of the required documentation I must send in: copies of driver's licenses, birth certificates, social security cards, car registrations, bank statements, utility bills, rent receipts, pay stubs, and a pile of their own forms to verify we are legal citizens (apparently birth certificates are not enough anymore).  We were doing well until we realized we can't find Chris' SS card, so he has to get a new one, and the line at the office yesterday was out the door and down the street.  He's going back today after work.

4.  Early Start:  For infants 0-3 who need developmental interventions.  The waiting list for a simple phone call was over a month.  I called on May 22 and didn't get a call back for a pre-interview until June 21 (when I called after two weeks, I was told they were still addressing inquiries made the week before mine, so I would have to wait my turn).  This program will also help with PT and OT, but only if no one else is helping (which is so far the case!)  When I asked about hearing, the social worker said I needed to call our school district...this was the week after school got out.  Awesome.

5.  Center For Early Intervention for Deafness (CEID):  This is a wonderful program that does in-home hearing intervention for babies, then a weekly pre-school program for toddlers and support classes for parents.  The audiologist suggested that they have the best program for Scarlett's hearing needs.  They said I needed to talk to Early Start...who said they don't deal with hearing.  Now, I can't get a response from them and will call again Tuesday.

6.  School District:  Apparently they are in charge of providing hearing services.  I haven't heard back yet, probably because it is summer and they are not in the office as much.  Plus, our school district is transitioning to a new special education director, so there isn't anyone to talk to yet anyway.

7.  Therapy at Play:  Scarlett will be evaluated for PT, OT and speech next week.  This is a separate center designed for children only that provides all three services under one roof.  Our insurance will cover a few visits, so we are doing that while we wait for everything else to come together.  I found them online, and liked the idea that all the services would be together, rather than in separate locations in a place designed for kids only (many of the PT places I found were for adults or sports injuries, and then had someone approved to see kids).  I feel strongly that Scarlett's care needs to be well communicated between all practitioners because it is so complicated.  Having all three in one place makes that much more reasonable.  However, it is about 30 minutes away from home in the opposite direction from the hospital, so it will be challenging to make the scheduling work.  We're going to try for a few weeks and see if it is the right fit for Scarlett, and if so, I will fight to make everything else come together as best I can.

So that is where I am stuck.  Only the therapy center has come through with a plan.  Everything else is trapped in bureaucracy.  It's a holiday weekend, so I can't make much progress until at least Tuesday.  I just want her to get what she needs before she falls any further behind.

If you have any insight on dealing with CA state social services, I would love to know any tricks.  E-mail me at scarlettgrace2010@gmail.com.