Tuesday, June 21, 2011

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.


Robin said...

Well, no matter what, your daughter is beautiful! Thank you for sharing your story! Praying for your family.

Haley said...

Thinking about You, Chris and Scarlett daily. It must be so hard coming to terms with all of the added surgeries to come, but I know your daughter will pull through. She is one tough cookie!

April said...

Don't beat yourself up over the decision to reconstruct her skull. I know sometimes our motherly protective instincts battle with the rationale that "She'll be better off in the long run." But you seem to have an excellent group of doctors all coordinating to give Scarlett the best care with the best possible outcome. The Father's Day photo of Scarlett really showed the area where her skull is misshapen. I think it really gave us better insight into why you feel the need for hats and head-covers, if only to stop people from looking right past that beautiful face in front of the skull. Scarlett is adorable and you're doing a great thing.

Irene K said...

She has grown so much! Her sweet little face, I just love it and thank you for sharing with us. Your family inspires me to be courageous, especially your little princess. Peace and Love from Austin Tx

Jennifer said...

Hi there. My name is Jennifer, I'm a mom of 5 in Southern Cali. I've been following your story for a few months now, and I just had to share something that just happened. I was reading this current post, and looking at Scarlett's adorable picture when my 9 year old glanced at the computer screen and gasped and said "Oh my gosh, what happened?" So I explained that the little baby in the picture had brain cancer, and the surgery that she had to have caused her head to be that odd shape, etc.. Well, when I finished my little explanation, he said "Yeah, ok.. but I was just wondering why she needed a feeding tube". Leave it to a child to see past the deformity and be concerned about the feeding tube. I should also say that my son had an NG tube for a few months, and now has a g-tube (failure to thrive and other malabsorption and growth issues), so he is familiar with feeding tubes. I thought it was heartwarming that he was concerned more about why she needs a feeding tube than the appearance of little Scarlett's head.

Prayers and good thoughts always going out to your family and that precious baby girl! :-)

Cristina said...

My family and I are continuing to pray for you, Chris, and especially Scarlett. She is such a trooper and I'm sure that when the time comes for cranial reconstruction she'll pull through like the strong girl she is. And when she is 16 and going to her first dance, she will be so thankful that she is perfect in every way!