2 MRI Week

Tomorrow, Scarlett will have her second MRI for the week.  It took a lot of negotiating between the doctors at both hospitals, but they came to an agreement that they each needed different kinds of scans, so we would do them both - with the promise to the neurosurgeon that the other hospital won't mess with her new shunt!  Today was a "quick scan" to check her shunt (all good - no changes needed).  No anesthesia, only 5 minutes.  Tomorrow is the scheduled tumor-monitoring scan, which takes much longer and will require an IV and sedation.  As always, we will have our fingers crossed that this scan is as uneventful as all the rest.

I am working on a big change for Scarlett that is taking a lot of my energy and time, but I can't wait to share in a few days!  It's the beginning of a new era here, and things are looking good!

Camp Okizu

Scarlett's healing has continued last week.  We stayed home from all of her therapies to give her time to rest, and it has helped.  Over the weekend, she really perked up and is now feeling pretty good as we get back to our regular schedule.  She is almost back to her pre-surgery baseline, but still tires easily.  At her follow-up appointment last week, the neurosurgeon was pretty happy with himself - he keep commenting on how smooth her forehead is, and how symmetrical her face is - good!

Later this week, she will have another follow-up to check the new shunt's progress (her brain had almost come back to its proper position after just 8 days). Then on Friday, she will have her next quarterly MRI to check for any tumor progression.  This means two MRIs this week - two different types at two different hospitals.  I wish I could say that they are no big deal, but I still get nervous for these tumor checks. 

I need to back up a bit and share our camp experience a few weeks ago.  We had such a fantastic time!  Unfortunately, we had such a good time that we barely remembered to use the camera, so we don't have much to show!

Our cabin, with the large deck where summer campers sleep outside.

One of a few lakes, with a craft building, canoes, and a swimming dock.

The awesome zipline - mommy and daddy both took a turn, but Scarlett did not appreciate the harness - maybe next year!

Scarlett and daddy singing at the campfire

Camp Okizu was started 30 years ago to provide a getaway for families with children who have fought cancer.  The camp is in northern California, in the mountains above Lake Oroville (about 3.5 hours from us).  It is open to families from all the major pediatric oncology centers in northern California - Lucile Packard at Stanford, Children's Oakland, Kaiser Oakland and Roseville, UC Davis, UCSF, John Muir and a few others.  Each summer, hundreds of kids who have fought for their lives get to escape their reality and enjoy some time in the woods swimming, fishing, canoeing, climbing ropes courses, swinging on zip lines, playing games, singing at camp fires, sleeping under the stars and enjoying the freedom of being accepted in a group of kids who understand what they have been through.

But patients are not the only focus.  Okizu offers a very unique experience: SIBS camp, or "Special and Important Brothers and Sisters".  The idea of having a healthy child in addition to a patient is overwhelming, but it is a reality for many families, who must find ways to balance the attention and resources for all their children;  Okizu gives those super sibs a chance to get away with other kids who know what it's like to be surrounded by sick.

Finally, we attended one of the many weekend family camps, this one specifically intended for families of brain tumor patients.  It was the first time we have ever sat in a room with a group of parents who know what we have been through.  They knew our fears about MRIs, the lingo of brain trauma and, probably best of all, they could laugh with us about things that are funny for us, but that other people just don't understand.  There were 7 brain tumor families in all; Scarlett was the youngest by many years, and was the only girl, but we still had a lot in common with the other parents.  We listened to their stories, commiserated on some of the all-too-common struggles and shared the roller coaster than is parenting Scarlett.

We were very lucky to meet some amazing people that we hope to see every year.  Some have been attending for more than 10 years, since their now-teenagers were little.  One family has been seeing the same neurosurgeon as Scarlett for nearly 10 years, so we immediately had a lot in common.  Everyone had an amazing story, and an amazing kid to show for it. 

The parent discussion groups were open to whatever the group wanted to discuss, but the second day, focused a bit more on the effect that such heath crises have on siblings.  It made me so grateful that Scarlett is our only child, and that we have been able to focus on her needs exclusively; I can only imagine how difficult it would have been to manage another child's needs over the last year.  Since we were the only family there with just one child, we didn't have much to add to the conversation, but we did get a chance to share our concerns about future children, and the trouble we have considering another child amidst Scarlett's needs.

Thanks to corporate sponsors and lots of fundraising, Camp Okizu is free to all campers, including meals, the beautiful camp facility and all activities.  We felt so lucky to be able to go, and were so glad that we were able to convince the surgeons to wait a few days so that we could get some fresh air before all those days in the ICU.  We can't wait to go next year, and for Scarlett to get the chance to go to camp (once she's a little older!). If you would like to read more about Camp Okizu's mission, you can visit their website at www.okizu.org.

19 Months - At Home!

We have been home since Monday afternoon.  It has been challenging, as Scarlett is not feeling her best.  She is irritable, clingy and nauseated - a nasty combination for anyone.  It was clear that she no longer needed the PICU-level observation, but there were no beds available on the recovery floor, so, since we have dealt with a lot of similar things at home already, we all agreed we would be better off at home.  One of the neurosurgeons explained that it is going to take a while (no one knows how long) for Scarlett to be back to normal; her brain is doing a lot of shifting and adjusting, so we just have to wait it out.  This morning, she woke up perkier after a full night's sleep, and has given us a few smiles and giggles, so maybe we are on the upswing.  She goes in for a follow up tomorrow, and will hopefully get the all-clear for therapy, play dates and school!

In other news, today Scarlett is 19 months old!  There's not much new to share - her weight, height, teeth and skills are all about the same (or a little less than before surgery).  This month has been very focused on this surgery, so not much else has happened.  However, now that it is over, we can look forward. 

Fine Tuning

Scarlett has had a rough couple of days.  She opened her eyes on Thursday evening, putting on quite a show for her grandpa and me.  She waved, clapped and laughed as she finally was able to see after three days of swollen-shut eyelids.  We were so happy to see her coming back to herself.

Friday, she woke up in a bit of a funk that she has yet to shake off.  She is not really fussy, but not at all happy.  She whimpers at most touches, and isn't happy to be held.  Then, today the vomiting came back; her bed has been changed at least three times, and is pretty fed up with wet wipe baths.  This could be a symptom of a huge range of things; so much has changed for her in such a short time that it is hard to determine what is causing her discomfort.

We were moved to the quieter, smaller room of the PICU on Thursday evening.  Friday and Saturday, we waited through the day for a bed to become available on the recovery floor.  By Saturday evening, her symptoms were becoming varied enough that the neurosurgery team decided to keep her in the PICU for closer observation.

Despite the discomfort, the doctors are very happy with her recovery so far.  Her skull is remarkably round; it will take many months, close to a year for her actual skull shape to emerge as swelling and shifting will continue to change her appearance.  As the bones begin to heal, the screws and brackets holding her skull bones together will dissolve, allowing her skull to grow naturally.  Once the bones begin to fuse, her skull will be just as strong as everyone else's.  For now, she has an incision across her head like a headband from ear to ear, plus a small curved incision on the back where the shunt was placed. 

Her shunt setting is still being fine-tuned as her brain adjusts to the increased amount of fluid.  The new shunt is adjustable (or programmable), which means the flow can be changed depending on the need using a specially-designed magnet against the valve on the back of her head.  Right now, we need her shunt to hold on to CSF to fill her new skull and "reinflate" the too-small ventricles (fluid spaces) in her brain.  As the pressure increases, the shunt can be dialed down to allow more drainage until we hit just the right setting.  Because her brain has been through so much so quickly over the last few days, the unhappiness is not unexpected, but needs to be monitored with regular "quick scan" MRIs that check the fluid collections.  She has had two scans since surgery, and it sounds like we will have another tomorrow.  Once the doctors feel she has balanced out, we will go home and get back to our regular routine.

One hour after surgery

Day 2 - purple eyelids, no eyelashes, puffy face

Day 3 - Open eyes, tiny smile!  Bandages off with a round head.

Day 4 - sitting up, playing.  Mommy made her some fancy gowns for this stay.  :-)

Day 5 - Sitting independently, looking much more familiar.  Another mommy-made gown!

Just too cute!  She loves to watch Finding Nemo on her new iPad - so much that she won't take her hand off, even when she sleeps!

 Every day brings a lot of progress.  Pretty soon, she'll be back to her old tricks again!

Return of the Feisty Girl

Being back in the Children's Oakland PICU has brought back many memories for Chris and me.  It is the place we watched our baby fight for her life for nearly three weeks, where we watched her have seizures, and where we started to regain some hope that she might survive.  At just two months old, sShe was just beginning to acknowledge the outside world with little smiles or gentle touches.  After surgery, we didn't know what to expect, when we would see "her" come back.  It took a few days, but eventually, her leg, the only extremity not tied down by IVs, started to reach out toward our touch.  It was a sign to us hat she was coming back to us.  As the weeks passed, she regained more and more of her feisty attitude came through, reassuring us that she was doing well despite the trauma.

Last night, the feisty girl made her way through yet again.  Her eyes are swollen shut, black and blue, and her face is completely round.  Her fingers, hands, arms and legs are swollen.  She had three IVs in both hands and a leg.  But she made sure we knew she was there.  Around dinner time, she started to kick her blankets off.  She grabbed the nurses' stethoscopes as they tried to listen to her breath.  While Chris was with her in the ICU last night, she somehow managed to "break" all three IVs.  They tried repeatedly to get a new IV in, but no one could - not the PICU nurses, not the NICU nurse, not the neurosurgeon, who finally decided to go IV-free and just give all her medications by g-tube.

Once I got in this morning, she tried to wiggle her way toward my voice, completely dislodging all the pillows and tubes around her.  She has pulled her bandage "hat" off a few times, and snarls a little kitten roar every time anyone moves her pacifier.  The feisty girl is on her way back!

The incredible swelling has begun to fade, and she is starting to look a little more familiar.  With her hands free, she has been rubbing her eyes all morning, trying to figure out why she can't see - frustrating for her, but I think all the stimulation has really helped the swelling go down. She is tolerating all the necessary medications in her stomach, along with her regular formula.  As soon as the doctors feel her swelling is down enough, she will be moved out of the PICU and to the recovery floor.

Swelling

We had a long, tiring night in the PICU. Action never ceases, no matter who is trying to sleep. Beeping, whirring, talking and crying cycled through the floor, but luckily Scarlett slept through most of it thanks to some heavy narcotics. Many of the nurses remember her from our month-long stay when her tumor was removed, so they keep coming by to check in. She's facing a few challenges right now. First, swelling has taken over her face. Hr eyelids are purple and have grown to cover her lashes; she hasn't been able to open her eyes all day. Sometimes we can tell she is awake, so we talk to her and try to give her our fingers to grab. Every once in a while a little tear slips out - heart-breaking! She is also having tummy troubles. She looked like was doing so well that they began giving her some Pedialyte through her g-tube. This resulted in a lot of vomit. She hasn't been able to keep anything down yet, so we have increased her anti-nausea meds. Since vomiting can be a sign that her inter-cranial pressure is high, she will be getting a quick MRI scan this afternoon to monitor the fluid build-up in her brain. Until then, we have her g-tube venting anything nasty so it doesn't have to go through her mouth (a strangely convenient aspect of the tube - it's as much a outlet and an inlet for the stomach...) Overall, everyone is very happy with how she is doing. It's hard to see her to swollen and zonked out on medicine, but we know that this is just a short phase to live through. She has already had an OT evaluation and will also see PT and maybe speech while she is here. For the next few days, we will be watching carefully and making sure that she is as comfortable as possible.

Recovery

The surgeon just came out to tell us that they are finishing up. Everything went well, blood loss was controlled, and she will be in recovery in about an hour. Thank you for all the positive energy and support today.