Miss Scarlett is home again. She was completely stable for the last two days, has been off morphine for more than 24 hours, and is tolerating meals. The PICU and neurosurgery staff felt that there was nothing they were offering that we could not handle at home (or get to the hospital in time to handle). Since we are pretty experienced at handling neurosurgical recovery at this point, they don't hold her inpatient for the sake of observation. They trust us. So, they packed us up with some at-home pain medication, and sent us on our way.
Brain surgery to home in less than 48 hours. Not too shabby. She is still very drowsy, and has yet to tolerate being put down, but no one here is arguing with her. Hopefully, we'll be able to downgrade her to the regular Tylenol tomorrow, and then she will be back to her trouble-making self in just a few days.
We will be taking it easy at home for the weekend. We never expected to be home this weekend, so we have no plans, no obligations.
Last night, and again this morning, the neuro-oncology team from Children's Oakland came to speak with us, as we requested. One of the doctors we met at the Pablove conference last month consults in Oakland 2 days a month, and that just happened to be yesterday and today. He has very strong feelings on what the next steps would be, so we asked some preliminary questions, and have that information to consider.
Monday we meet with her primary Neuro-oncology team at Stanford. I hand-delivered discs of her latest MRIs to them in Palo Alto this morning, so they will discuss her in tumor board, and then meet with us directly after. I am not sure what their plan of attack will include yet, but I have a feeling it is going to look very different than the option already on the table. I am having a hard time considering anything that would eliminate the team who we have relied on so heavily for the last two years. They know Scarlett better than anyone outside of Chris and me, and have been with us through hell and back. I can't imagine going forward without them.
I am not sure how we are supposed to make a decision like this. I am sure we will find something that convinces us in one way or another, but it's all too big to conceive of right now. We are currently scouring the internet for articles, journals or anecdotes of infants with recurrent high grade glioma. Luckily, I guess, there isn't too much to sift through that we haven't already seen or heard about.
Everyone agrees on a few things. They all want us to "enjoy" our Christmas, and not try to make too many decisions before then. But the flip side of that, which they also agree on, is that we don't have long to ponder; if the tumor that was removed continues the observed growth pattern since September, it will basically double every 6 weeks or so. It would be ideal to start treatment before any significant growth occurs (existing tumor is the main factor in success rates; less tumor to stop gives a decidedly better outcome).
So, we have about 3 weeks. By the first week of January, she will be in some new treatment plan that will send our entire world into a tailspin yet again.
Friday, December 14, 2012
Thursday, December 13, 2012
Starting Over
We're settling in. Scarlett is recovering well. She is still on round-the-clock morphine, but we are working on weaning her to Tylenol. Last night, she got pretty feisty, kicking her catheter line out several times (requiring full bed changes), pulling off the bandages on her head, and eventually wiggling free from the arterial IV line, the one that took over an hour with three anesthesiologists to place in surgery yesterday (the anesthesiologist later came to tell me it was her most difficult IV placement. Ever.) She finally settled down and I fell asleep around 11, to then be woken at 2:00am to be moved to a different bed spot in the PICU. I groggily carried my bedding across the unit to the quieter, more spacious side, and settled back in on the squeaky sleep chair. Around 5, they decided to draw labs, but they couldn't get any blood through the remaining IVs, so I awoke to Scarlett screaming as they pricked her toe and heel to get enough. At 7, rounds began, so I was on deck to talk with doctors and get the plan for the day.
This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed. We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.
We are in a daze. As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts. I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing. We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning. She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand. She wanted to check in on us, and to let us know that there are still many options. Hearing the details, though, hit home.
She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems. If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital. And then she stopped short to say she was assuming we wanted to proceed with treatment.
Is there a choice? I know there is, though I can't imagine choosing to give in at this stage. Yes, we will proceed with treatment.
She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding. She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further. She said we will have to look at balancing aggressive treatment with quality of life.
Quality of life.
How did we get back to this place? How is this happening again? I was so sure, so convinced that we had left these questions far behind. She has been doing so incredibly well. Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide. Plans were made faster than we could blink, and it made things easier to not have to think about it. Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.
I know too much. I cannot forget or ignore what I have seen, read, and learned over the last two years. I have seen countless other families be faced with watching their children, their babies, die in their arms. Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few. I have read about their last vacations, their last days and the emptiness of the days, weeks and years after. I can hardly swallow, hardly breathe when I think about facing that with Scarlett. Not after everything we have been through already. The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.
This is not fair. Not for anyone who had done it before us, not for us, not for me. Not for Scarlett.
Our plan is to meet Monday, pending Scarlett has been discharged. Hope is not lost - there are options. We will learn more about them and make some decisions soon. Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals. I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.
My greatest fear is that this is the beginning of the end. It's a premature thought, and I am not giving up. But I can't deny what I have seen.
This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed. We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.
We are in a daze. As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts. I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing. We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning. She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand. She wanted to check in on us, and to let us know that there are still many options. Hearing the details, though, hit home.
She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems. If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital. And then she stopped short to say she was assuming we wanted to proceed with treatment.
Is there a choice? I know there is, though I can't imagine choosing to give in at this stage. Yes, we will proceed with treatment.
She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding. She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further. She said we will have to look at balancing aggressive treatment with quality of life.
Quality of life.
How did we get back to this place? How is this happening again? I was so sure, so convinced that we had left these questions far behind. She has been doing so incredibly well. Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide. Plans were made faster than we could blink, and it made things easier to not have to think about it. Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.
I know too much. I cannot forget or ignore what I have seen, read, and learned over the last two years. I have seen countless other families be faced with watching their children, their babies, die in their arms. Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few. I have read about their last vacations, their last days and the emptiness of the days, weeks and years after. I can hardly swallow, hardly breathe when I think about facing that with Scarlett. Not after everything we have been through already. The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.
This is not fair. Not for anyone who had done it before us, not for us, not for me. Not for Scarlett.
Our plan is to meet Monday, pending Scarlett has been discharged. Hope is not lost - there are options. We will learn more about them and make some decisions soon. Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals. I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.
My greatest fear is that this is the beginning of the end. It's a premature thought, and I am not giving up. But I can't deny what I have seen.
Wednesday, December 12, 2012
Surgery #13
Scarlett is out of surgery, headed to the PICU for recovery. We just spoke with the surgeon. Here's what we know right now:
Getting an arterial IV line in her was very difficult, so it took an additional few hours.
The entire growth was removed, including some of the adjoining tissue that might harbor rogue cells.
The pathologist looked at a sample. The initial impression is that we are again looking at glioblastoma multiforme (GBM). Official diagnosis results will come in the next few days, but it is definitely some kind of tumor. I have some particularly colorful words I could add here, but I'll keep it PG-rated for now.
While they had her opened up, they used a mesh to help repair some of the unhealed soft spots on her skull. This will hopefully help them heal stronger.
They expect her to be ready to go home Sunday or Monday.
Her doctors at LPCH at Stanford are being informed, as well as samples sent soon to start developing their plan. Her case will also be presented this Friday to a doctor we met at the Pablove conference in LA last month, who consults at Children's Oakland. Basically, everyone is on it, and we should have a plan (or likely, a choice of plans...) soon.
We are pretty tired after waking up at 4:30am and being anxious all day. I will be staying the night in the PICU tonight while Chris goes home to sleep. I am hoping we can keep her more comfortable with pain medication this time.
Thanks for checking in on us. I'll continue to update as we learn more about this new phase.
Getting an arterial IV line in her was very difficult, so it took an additional few hours.
The entire growth was removed, including some of the adjoining tissue that might harbor rogue cells.
The pathologist looked at a sample. The initial impression is that we are again looking at glioblastoma multiforme (GBM). Official diagnosis results will come in the next few days, but it is definitely some kind of tumor. I have some particularly colorful words I could add here, but I'll keep it PG-rated for now.
While they had her opened up, they used a mesh to help repair some of the unhealed soft spots on her skull. This will hopefully help them heal stronger.
They expect her to be ready to go home Sunday or Monday.
Her doctors at LPCH at Stanford are being informed, as well as samples sent soon to start developing their plan. Her case will also be presented this Friday to a doctor we met at the Pablove conference in LA last month, who consults at Children's Oakland. Basically, everyone is on it, and we should have a plan (or likely, a choice of plans...) soon.
We are pretty tired after waking up at 4:30am and being anxious all day. I will be staying the night in the PICU tonight while Chris goes home to sleep. I am hoping we can keep her more comfortable with pain medication this time.
Thanks for checking in on us. I'll continue to update as we learn more about this new phase.
Keeping Busy
Scarlett was taken into surgery around 9:30 am PST. It's nearly 11, and we have not yet heard that the actual surgery has begun - they are still preparing, setting IVs and breathing tubes, etc. The OR nurse will call us soon.
The neurosurgery team took on a very short case before Scarlett's, so we were delayed a bit. It made for a very long morning, but everything went according to plan.
We signed consent for "brain tumor resection." Seeing that instead of biopsy was a bit jarring - we've been avoiding the idea of a new tumor as much as we could, but I guess the doctors aren't.
The only question I had for the surgeon this morning was how much change was evident on yesterday's MRI compared to the last imaging in October. He said very little, if any change. This gives me a bit of hope - still very slow growing. His words: "We're just going to get it out of there." I can get on board with that.
Scarlett did not sleep well last night, so by the time it was finally time to go into surgery, she was pretty cranky (but who can blame her, right?) As we handed her off, we told the surgeon that she was just too excited to see him again...he laughed and said, "Well, I got plenty of sleep." Sounds like it will be a good day for him.
For now, Chris and I are camped out in the hospital cafeteria with computers. Part of my plan to keep my mind busy while we wait and wait is working on changing some of the blog elements. If you see random changes, please be patient with me!
More to come...
The neurosurgery team took on a very short case before Scarlett's, so we were delayed a bit. It made for a very long morning, but everything went according to plan.
We signed consent for "brain tumor resection." Seeing that instead of biopsy was a bit jarring - we've been avoiding the idea of a new tumor as much as we could, but I guess the doctors aren't.
The only question I had for the surgeon this morning was how much change was evident on yesterday's MRI compared to the last imaging in October. He said very little, if any change. This gives me a bit of hope - still very slow growing. His words: "We're just going to get it out of there." I can get on board with that.
Scarlett did not sleep well last night, so by the time it was finally time to go into surgery, she was pretty cranky (but who can blame her, right?) As we handed her off, we told the surgeon that she was just too excited to see him again...he laughed and said, "Well, I got plenty of sleep." Sounds like it will be a good day for him.
For now, Chris and I are camped out in the hospital cafeteria with computers. Part of my plan to keep my mind busy while we wait and wait is working on changing some of the blog elements. If you see random changes, please be patient with me!
More to come...
Tuesday, December 11, 2012
Getting Ready
Scarlett is getting ready for her surgery tomorrow. She, of course, has no idea what is coming. This morning, she had the pre-operative MRI that maps her brain for the surgeon. This includes the placement of fiducials, 7 little buttons glued to her head, that will help guide the neurosurgeon in placing her head exactly right to find the tiny spot to be removed. He calls them his GPS. We learned today that Scarlett is the only neurosurgery patient tomorrow, and we should expect 6-9 hours in the OR. Seems like an awfully long time for such a small spot, but, hey, it is brain surgery - we want him to take as much time as he needs to do it right.
We are holding up okay. It has been a stressful few days preparing for the long days and nights ahead. I will be out of my classroom for 4 days (or so I am planning - there's no telling what will be happening next week). 4 days of lessons plans for kindergarten is a big job - they need to stay busy! My great colleagues are being wonderfully helpful, and I am trusting that my class will be fine. I'll be back just in time to enjoy some last minute holiday fun with them before our long winter break.
Chris has been running Scarlett to school and appointments and taking care of all the paperwork and details before surgery. While he was at the hospital today, he filed a request to have a slide of tomorrow's biopsy released to her doctors at Lucile Packard at Stanford so that everyone can work together (we hope) on the most reasonable plan for Scarlett.
Tonight, we are taking it easy, trying to relax. We have to finish packing - I could pack for the hospital with my eyes closed by now - yoga pants, tank top, t-shirt, sweatshirt, socks, slippers, ear plugs, headphones, fleece blanket. Laptops and Kindle and hospital requirements. There's not much room for more than that. Chris and I rotate each night, one staying in the hospital overnight while the other gets some semi-quality sleep at home. We know the routine, which table we will scout out for its convenient electrical plugs in the cafeteria as we wait tomorrow. This time we had the luxury of time before surgery - many have been in emergency situations with no warning - so I was able to make a little treat to share with the PICU nurses that always take such good care of her (and us).
Scarlett is NPO (no food) after midnight. We have to be at the hospital at 6:30am, so with a coffee stop on our way, we'll be out the door long before the sun comes up. Surgery is scheduled to begin around 8:30am PST, and we will update as much as we can.
Thank you all for your support throughout this difficult time. For now, Scarlett is working off the last of her energy for the day by climbing on and through the step-ladder we have used to decorate the house...
Tuesday, December 4, 2012
Scheduling
Well, it took me 4 days to get a chance to type out a post about what is happening right now. As I went to change the font - the very last step - everyone's favorite blonde troublemaker leaned over to bellyflop onto the keyboard, deleting my highlighted text. Therefore, the long story of our scheduling chaos is gone.
To prevent this from happening again, here's the short version: Scheduling all of these doctors just plain sucks. Several doctors have rescheduled appointments lately, which makes it harder. Scarlett has a cold, so with all the extra appointments, she has had to miss several days of school. The end.
More importantly, Scarlett is scheduled for surgery next week, on Wednesday, 12/12/12. Hopefully, her neurosurgeon will be able to remove the entire mystery spot, and we will get some answers on what we are dealing with here. They expect her to be in the hospital for 3-5 days, depending on how her body handles it all.She will have a "stealth" MRI the day before to map out the surgical zone. He may or may not deal with some of the cranial bones that are not healing properly.
That's pretty much it. We have the house nearly Christmas-ized, since we will be gone for most of the next week. As stressful as it is to manage all of this, it's hard to be too upset when there is a smiley little girl around.
Whew, at least I got that typed before she dive-bombs me again!
To prevent this from happening again, here's the short version: Scheduling all of these doctors just plain sucks. Several doctors have rescheduled appointments lately, which makes it harder. Scarlett has a cold, so with all the extra appointments, she has had to miss several days of school. The end.
More importantly, Scarlett is scheduled for surgery next week, on Wednesday, 12/12/12. Hopefully, her neurosurgeon will be able to remove the entire mystery spot, and we will get some answers on what we are dealing with here. They expect her to be in the hospital for 3-5 days, depending on how her body handles it all.She will have a "stealth" MRI the day before to map out the surgical zone. He may or may not deal with some of the cranial bones that are not healing properly.
That's pretty much it. We have the house nearly Christmas-ized, since we will be gone for most of the next week. As stressful as it is to manage all of this, it's hard to be too upset when there is a smiley little girl around.
Monday, November 26, 2012
Thanksgiving
We are getting ourselves back in order after our Thanksgiving vacation. We have not traveled at all since Scarlett was born, and in the last week, Chris and I stayed in three hotels, took four flights and packed and unpacked more bags than we should have needed.
Scarlett took her very first flight. We were prepared for trouble - I asked doctors at both hospitals about safety issues of going through airport security and flying with a shunt; both agreed there should be no problem. Just in case, I also asked where we should take her if we should encounter a problem (Seattle Children's Hospital was their approved place). Luckily, we had no problems. TSA at both Oakland Airport and Seattle-Tacoma Airport let us through with only minimal difficulty. The biggest confusion we had was with milk: we carry individual boxes of shelf-stable whole milk for feeding Scarlett. The TSA guard asked me to pour it into a sippy cup...which we don't use. As soon as I began to explain that she is tube fed, and does not use a sippy cup or bottle, he handed the boxes back and said not to worry about it. We must have looked innocent enough!
Other than hauling all of our gear through the airport, we had no problems. Scarlett fell asleep the second the plane started to speed up on the runway. We took her car seat on board (we have a Radian, which folds for carrying, and used GoGoBabyz car seat carrying strap to make it manageable) so she was comfortable.
Once we arrived in Seattle, we met my sister, her husband and Scarlett's cousin Caleb. We all stayed in downtown Seattle one night before driving to my grandparents' house further north. It was Chris' birthday, so we arranged a special treat - he and I got to eat dinner at Sky City, the rotating restaurant at the top of the Space Needle. Despite the rain (and there was a LOT!), we could see for miles in every direction. It was beautiful and gave us a chance to recharge after a busy week.
The next day, we had planned to do some sightseeing at Pike Place Market, the Ballard Locks and the original Starbucks (while Chris still gets a discount!). Unfortunately, we were caught in one of the biggest rainstorms in recent memory - streets were flooded, freeways were clogged with traffic and the idea of getting in and out of cars with two wet babies quickly lost its appeal. Instead, we decided to do a toddler-friendly activity - we visited the Seattle Aquarium. Scarlett and Caleb loved the touch ponds and watching all the fish swim around. We all enjoyed walking around while staying dry.
That evening, we drove the 100 or so miles to my dad's parents' house in Sedro-Woolley. It's a tiny town, and their house is way outside of town, on a hill near the Skagit River. We spent the next few days visiting. When my grandparents needed a break from babies, we went to the mall, where there was a great play space where we could let them explore.
For Thanksgiving, we cooked all morning, then enjoyed a wonderful meal with family. Scarlett ate a ton, and particularly enjoyed candied sweet potatoes and pumpkin pie.
By Friday, we were all ready to get back home. We left early in the morning to make our flight. We flew back with both babies - I'm sure everyone waiting for the flight was terrified of us! Luckily, both kids were pretty good, and we all got home in one piece.
Now I'm back at work and Scarlett is back at school. We are waiting to hear back about scheduling her surgery, which will seriously impact how the rest of this holiday season is spent around our house.
Scarlett took her very first flight. We were prepared for trouble - I asked doctors at both hospitals about safety issues of going through airport security and flying with a shunt; both agreed there should be no problem. Just in case, I also asked where we should take her if we should encounter a problem (Seattle Children's Hospital was their approved place). Luckily, we had no problems. TSA at both Oakland Airport and Seattle-Tacoma Airport let us through with only minimal difficulty. The biggest confusion we had was with milk: we carry individual boxes of shelf-stable whole milk for feeding Scarlett. The TSA guard asked me to pour it into a sippy cup...which we don't use. As soon as I began to explain that she is tube fed, and does not use a sippy cup or bottle, he handed the boxes back and said not to worry about it. We must have looked innocent enough!
Other than hauling all of our gear through the airport, we had no problems. Scarlett fell asleep the second the plane started to speed up on the runway. We took her car seat on board (we have a Radian, which folds for carrying, and used GoGoBabyz car seat carrying strap to make it manageable) so she was comfortable.
Once we arrived in Seattle, we met my sister, her husband and Scarlett's cousin Caleb. We all stayed in downtown Seattle one night before driving to my grandparents' house further north. It was Chris' birthday, so we arranged a special treat - he and I got to eat dinner at Sky City, the rotating restaurant at the top of the Space Needle. Despite the rain (and there was a LOT!), we could see for miles in every direction. It was beautiful and gave us a chance to recharge after a busy week.
The next day, we had planned to do some sightseeing at Pike Place Market, the Ballard Locks and the original Starbucks (while Chris still gets a discount!). Unfortunately, we were caught in one of the biggest rainstorms in recent memory - streets were flooded, freeways were clogged with traffic and the idea of getting in and out of cars with two wet babies quickly lost its appeal. Instead, we decided to do a toddler-friendly activity - we visited the Seattle Aquarium. Scarlett and Caleb loved the touch ponds and watching all the fish swim around. We all enjoyed walking around while staying dry.
 |
| A diver answered questions from in the big tank. |
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| Scarlett loves fish! |
That evening, we drove the 100 or so miles to my dad's parents' house in Sedro-Woolley. It's a tiny town, and their house is way outside of town, on a hill near the Skagit River. We spent the next few days visiting. When my grandparents needed a break from babies, we went to the mall, where there was a great play space where we could let them explore.
 |
| The best baby entertainment at Nanny and Papa's house: the stairs! They both climbed up and down as many times as they could. |
For Thanksgiving, we cooked all morning, then enjoyed a wonderful meal with family. Scarlett ate a ton, and particularly enjoyed candied sweet potatoes and pumpkin pie.
Now I'm back at work and Scarlett is back at school. We are waiting to hear back about scheduling her surgery, which will seriously impact how the rest of this holiday season is spent around our house.
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