Good News, Bad News. . . .

Yesterday Stella had an appointment with a hearing doctor.  One of the side effects of her chemotherapy can be hearing loss in the upper frequencies, so they need to monitor this as well.  In addition, her tumor has impacted her 6th and 7th cranial nerves, so that the left side of her face is somewhat paralyzed and her left eye has no lateral eye movement.  The 8th cranial nerve is very close to those two and is responsible for hearing, so they want want to keep a close eye on this as well. 

Thankfully, she did well on her hearing test and is showing no deficiencies in that area at this time.  We need to follow up immediately if we see any change, and she will see this doctor again in five months. 

The one bummer is that this doctor told us, in her experience, children who suffer facial paralysis as a result of a brain cancer impacting the 6th and/or 7th cranial nerves typically do not see improvement with the paralysis.  She wanted us to be aware that this is how Stella's face will likely be for the rest of her life.  In rare cases she has seen some improvement, but it can take years of physical therapy.

That was a bit of a blow.  Her facial paralysis and left eye dramatically worsened after her surgery, and it makes me sad to think that there is little chance of improvement.  In the grand scheme of things I know it is minor - we can deal with it, and anything else, so long as she is alive.  It just makes Rob and I sad to think of how kids may treat her as she grows up because her face looks a bit different.  Most will have no idea why her face and eye are like that, and kids can be mean when someone is different.  I am hopeful that since we live in a small(ish) town and close knit community that these challenges will be lessened for her.  I also think we may be able to straighten the eye with surgery if necessary, so that is something we will look into in the future.   

We are still going to start physical therapy for Stella and have a meeting on September 12 with the Early Childhood Intervention specialist.  She will monitor Stella and will connect her with a physical therapist, and will also be there to assist if Stella shows any other types of impacts because of her illness.   

Below is a picture of Stella before bed time this week, where you can see how the tumor has impacted the left side of her face.  Even with her left side not working as well, we think she is a beauty. 

ChemoTreatment # 2 Is Done!

Stella had her second chemo treatment today.  She did well, but both she and I are exhausted by the end of the day.  We left our house around 10 a.m. to drive to the clinic in Reno and didn't get done until after 5 p.m.  Stella is handling the transfusion part (which takes 4 hours) really well.  She just hangs out in her chair and watches movies, does art projects, snacks, and plays games.  I think we have been doing a pretty good job - with the help of the fun boxes Steph and Sarah have put together - of keeping her occupied for several hours with a bunch of different fun play options.  Today she made a bracelet, decorated a princess magnet and made pictures with glittery flower stickers.  :-)  There were two other little kids there today (a five year old girl and a 3 year old boy) getting chemo at the same time, and Stella was so sweet and happily shared her toys and stickers with them. 

The five year old girl we met today also has a pilocytic astrocytoma and it was really nice to talk to her mom.  This is her second round of chemo.  She was diagnosed at 15 months and after the first round of chemo her tumor went into remission for a year.  It started growing again late last year.   Hopefully the second round of chemo will knock it out.  That seems to be the pattern from the majority of families I have spoken with. 

The hardest part of the day for the parents and kids is putting the needle in the port at the beginning of the day and taking it out at the end.  That is pretty excruciating.  Stella screams, kicks, cries and basically is completely terrified during that process, and all the while I am holding her down and physically restraining her.  I will admit that I have a hard time not bawling myself during these times.  I don't see it getting any easier in the future, although I really hope it does!  The five year old girl who has been through almost two years of chemo in total was also terrified when the nurse was ready to take her port out and cried really hard.  It was difficult to watch and I got a bit teary eyed.  These kids go through so much. 

I am hoping to avoid Stella getting sick tonight.  I gave her some Zofran as soon as we got home, and gave her more right before bed.  Hopefully that will reduce her nausea.  We shall see! 

** Quick 5:30 a.m. update - the Zofran seems to have done the trick!  I just checked on Stella and she is still asleep - no vomiting or waking up all night.  :-)  ** 

 

 

Stella feels pretty comfortable once we get her settled in.  :-)  Lounging and watching Super Why. 

 

Having fun decorating a princess magnet.  :-)  Stella had two magnets, but gave one to her new friend who was also getting chemo.  They both had a lot of fun with this. 

 Checking out the fun projects Sarah put together for Stella. 

She is becoming a pro at getting her vitals checked!  She doesn't even need to sit on my lap for these things anymore, which is huge progress. 

And I have to add a cute one of Stella and Rob from our outing at the bowling alley yesterday.  We are trying to keep things as normal as possible for all three kiddos during this time, and especially while Stella is feeling good.  Rob is doing a great job of making sure all three kids are having a lot of fun.  He is also making sure the boys get to their sports practices when Stella and I are at her chemo treatment. 

 

Quick Post Chemo Update

Just wanted to post a quick update to let everyone know how Stella has been doing in the days since her first chemo treatment.  She got sick the first night for about 3 1/2 hours.  I was up with her until about 3 a.m. teaching her how to throw up in a bowl and cleaning her up.  Needless to say, on Wednesday we were all exhausted.  I think our entire family was asleep last night by 8:30.

Thankfully, that has been the extent of Stella's nausea so far.  She has otherwise been doing great.  She has been eating well and has not been running a fever.  We have to keep a close eye on her temperature as her immune system gets low and have been told that we must immediately take her to the hospital if she ever gets a fever that sits at 100.5 for an hour, or if her temp ever hits 101.  

Today I had a short meeting with Leslie Katich at the Northern Nevada Children's Cancer Foundation.  We had been referred to them by our oncologist as well as some friends who have a child with cancer.  Leslie called me last week to introduce herself and their group, and today we were able to meet in person.  What a great organization.  Their sole purpose is to raise money to help families in Northern Nevada who have children with cancer.  They provide counseling services, organize events for families, provide financial assistance, and provide all sorts of other support.  If you are a family in Northern Nevada (or the eastern Sierra, I believe they work with families in Tahoe) who has a child with cancer, I strongly urge you to reach out to this group.  And if you do not have a child with cancer (and I sincerely hope you do not), but are looking for an amazing organization to support in any way, please think of this one.  I was extremely impressed with Leslie and the foundation.  http://www.nvchildrenscancer.org/  My kids will also be happy when I get home from work (yes, it is 7:45 p.m. and I am still at work trying to catch up. . .) because Leslie sent me home with toys for Stella, Max and Eli.  This woman would not take no for answer!  :-)

Below is a picture of Stella from yesterday.  Leah took her to the craft store while I was at work and they made the cutest tutu.  :-) 

   

One chemo treatement down, forty-one to go!

We survived Stella's first chemo treatment!  It was a really long day, but I was extremely impressed with how well Stella did overall.  

Stella and I left the house around 10 a.m. to head to the clinic in Reno.  We feel very lucky that Children's Hospital Oakland operates a clinic in Reno and we are able to do her chemo there.  Although we like the bay area, traveling to Oakland once a week for over a year would get old really fast.  Thankfully we only have to travel to Reno.  

Stella has a prescription for a numbing cream (Lidocain and Prilocaine) that I am supposed to put on her skin in the area that covers her port an hour before we arrive.  The cream makes her skin numb so that she is not in pain when they insert the needle into her port.  Once we arrived at the clinic, I discovered that I put the cream on incorrectly.  I rubbed a little bit into the skin like a lotion.  Apparently I was supposed to place a huge glob on top of the skin and then place a big bandage over it.  Oops.  So, we had to reapply the cream and wait an hour before we could start treatment. 

Once Stella was numb, they had to hook into the port.  (If you are wondering what the port is and/or does, here is a good explanation: http://lookingforcure.org/index.php?option=com_content&view=article&id=103:use-of-port-a-cath&catid=42:chemotherapy&Itemid=55).  That was not a fun process. Basically, two nurses and I held Stella down while she screamed bloody murder and a nurse tried to stick an inch long needle into Stella's port.  Once that was clipped in, they then had to take three or four viles of blood.  Stella screamed the entire time through this process and tried to pull out the line from her port.  After the blood was drawn, we were able to put her shirt on over the line and she calmed down.  I don't think she is actually in pain, but the process is just really scary for her given all she has been through.

Stella has to have blood drawn through her port every week before her chemo treatment.  The lab work is done very quickly to get certain counts that I don't really understand yet (but I will soon know all about, I am sure).  If certain counts are too low she cannot get chemo that week.  The counts also give an indication of how high or low her immune system is.  We are obviously going to have to keep a close eye on those numbers. 

Stella was then hooked up to an IV drip and she and I hung out for next 4 hours.  She has about 5 feet of slack on her IV line, so she can move around a little bit.  She did terrific through that process and did not fuss or cry at all.  She and I watched Super Why and Barney on my iPad (thank goodness they have wireless Internet access. . .), played with all of the fun items in her special treasure box, played games, snacked, and basically just passed the time doing whatever she wanted.  She really only started to get restless the last half hour we were there.  She flipped out again when the nurse took out the line to her port, but got over it pretty quickly.

The treatment takes 4 hours total - the first hour is her anti-nausea medication and some liquids, the second hour or so is the actual chemo drugs, and after that she has two hours of liquids to flush everything through her system. It is a long process, but Stella handled it well.  She was pretty exhausted by the time we left and she napped the whole way home. 

So far no nausea or other side effects.  From what I understand, those can take a few days to kick in, or may only kick in after several treatments.  We will just take it a day at a time and see what happens. 

**1:45 a.m. update. Well, Stella's nausea has kicked in.  Just spent the last hour cleaning up throw up.  Got her all cleaned up and changed her sheets, then put her back to bed.  She promptly threw up a second time.  Did it all again and kept her out of bed for a little while to make sure she felt better. . .crossing my fingers that is the extent of it for tonight. **

Below are a few pictures of our day. . .

 

 

 Stella spent a lot of time on my lap watching shows and playing Monkey Preschool Lunchbox (a current favorite). I tried to hide the IV line under her blanket and pillow so she wouldn't pull on it. The nurse has decided that Stella should name her doggie pillow Vinny, after the chemo drug Vincristine. . . I'm not so sure about that.

 She spent lots of time exploring this fun box of goodies. 

We "played" some games while waiting for her numbing cream to kick in. . . this picture shows how I should have applied it before leaving home.  :-)  I'll get it right next time.

   

Getting Ready for Tomorrow. . .

Tomorrow Stella starts her chemo treatment.  I am definitely a bit anxious and wonder how she is going to react.  But I am also very ready to just get this thing going so we can get into a routine and get through it.  We are all ready for tomorrow - I have downloaded Stella's favorite movies onto the iPad (Barney and Wiggles), and our friend Steph made her an adorable box filled with tons of treasures that should occupy her for hours.  Steph suggested that I refill it with new stuff every week for her to discover during chemo, and I think that is a fabulous idea. Below is a picture of Stella's chemo toy box:

In the below picture you can get a decent look at Stella's port.  It is the small bump below the little bandaid. It has not seemed to bug her too much the last few days, but we shall see how tomorrow goes! We have a numbing cream that we are supposed to put on her an hour before chemo starts so that it doesn't hurt when they stick the needle into the port.   

Finally, I wanted to share a link to a paper written by a father of a child who has the same type of tumor (in the same location) as Stella, entitled Surviving a Pediatric Brain Tumor - A Parent's Perspective.  This paper discussed their first year of dealing with this disease.  I related to so much of what is in this paper, and it gave me good insight on what is to come.  If you are interested, you can read this paper at:  http://www.teamsamantha.org/uploads/2005-white-paper.pdf  I have spoken with this family, and their daughter is now a pre-teen who ended up going through two rounds of chemo before her tumor stopped growing.

Max and Eli's First Day of School

Today was a big day - Max started first grade and Eli started kindergarten!  :-)  They both had a great day and are thrilled to be back at school.  Eli has Mrs. Norris and Max has Mrs. Romo.  I think they are going to have a great year!  So far we are loving their school.  The teachers and staff are so great and many of them are friends.  Our neighbor, Sue, works there and texted me today to let me know that Max was doing great and playing football during recess. Another friend, Jenn, texted me a picture of Eli so that I knew he was doing well!  I loved getting these texts.  We feel very lucky to know that our kiddos will be well looked after at their wonderful school. 

Big thumbs up before school.  If you look closely you can see that Eli has two black eyes.  He fell on his face playing with friends on Friday and has some pretty good shiners now - just in time for school!  I definitely got a few weird looks from parents that didn't know me. . .

Here is a cute one of Max and Eli with their friends Connor, Devin and Kiley.  Max, Devin and Kiley were all in kindergarten together last year and are good buddies.  Love them. 

Chemo Port Surgery is Done!

Today Stella had her port inserted at Children's Hospital Oakland.  It was a short surgery and she did very well.  We checked into the hospital at 9 a.m. and her surgery began shortly before 10:30 .  The surgery lasted about an hour and we were out of the hospital and heading home by 1:00 p.m.  The port is under her skin and there appears to be only a slight bump.  It is pretty small.  She seems a bit uncomfortable from the surgery and does not want to lift her right arm.  She is otherwise doing great. 

We made this trip to Oakland a little mommy/Stella getaway.  Stella is such a girl and loves to go shopping, so on our drive down yesterday we stopped at the outlet stores in Vacaville and looked around.  At the Cole Haan store she insisted on trying on some (not so cute) pink heels and walking around the entire store.  It was pretty adorable watching her try to walk around in her heels.  She made me put on a matching pair, and we just had to have our picture taken.  :-)

We feel very lucky to have had so many friends in the bay area offer to let us stay with them if necessary.  I cannot express how much we have appreciated those offers.  Last night we stayed with my sweet friends Moira and Daniel, who live super close to the hospital and have an awesome two-year old daughter named Evie.  Stella and Evie quickly became BFFs and they played for hours.  They were ridiculously cute together.  Stella was sad to leave Moira, Daniel and Evie this morning - and she was especially bummed once she realized she was leaving to head to the hospital.



Overall, I would call this a successful trip.  It felt a bit weird to be back at Children's Hospital after our long, difficult ordeal in July, but everyone at the hospital has been terrific to us.  Stella was also treated by a few of the same doctors and nurses during this quick visit and they all remembered her, which was nice.  The thing I was most nervous about (other than the surgery itself) was the fasting this morning.  Her surgery was not scheduled until 10:30 a.m. and she was not allowed to eat after midnight and could only drink clear fluids until 6 a.m.  Stella did great though, which was a huge relief.  I got up several times in the middle of the night to give her milk and apple juice and she did not complain too much about food this morning.  Thank goodness. . .  I will never forget being in the ICU on July 8 (the day before her brain surgery) waiting for her to get an MRI that was not scheduled until noon.  She was starving and they would not let her eat anything before the MRI.  She literally kept screaming "Apple Jacks! Cookies! Ice Cream!  Cereal!  Banana!" at me for hours and then tried to search the garbage cans for food.  It was one of the biggest melt downs ever and I am now always a bit stressed when she has to fast . . .  there is no reasoning with a two-year old!!!!

Chemo here we come. . .

Today we spent almost two hours meeting with one of Stella's neurooncologists, Dr. Hastings.  We received a ton of information that I am still digesting.  The short of it is that Stella starts chemo next Tuesday, August 20.  Thankfully, Children's Hospital Oakland operates a clinic in Reno and Stella is able to do her chemo there.  She will be on Carboplatin and Vincristine.  Her protocol will last approximately 58 weeks.  She will have 10 weeks straight of chemo, then a 2 week break.  Then she will go onto "maintenance," which consists of 4 weeks of chemo then 2 weeks off.  She repeats that 4/2 cycle 8 times for a total of 48 weeks.  The weeks she gets Carboplatin (which is most of the weeks) we will be at the doctor's office for approximately 4 hours, so I am going to have to come up with lots of creative ways to keep her occupied.  I am sensing a lot of Wiggles in my future. . . .

She will have an MRI in 6 weeks, and another MRI 6 weeks after that.  They will likely go to every 3 months after that.  We will be watching to see if the tumor stops growing, shrinks, or continues to grow.  If the tumor is not responding, we will switch up the chemo.  Hopefully this chemo will work well since, according to the Dr., this protocol tends to have less side effects on the patients than the others. 

Dr. Hastings says it is "likely" Stella will lose her hair, although she did say that some kids don't.  Stella will probably feel nausea, low energy, some loss of appetite and at times her immune system will be very low.  If you are visiting ever during these times, just know we are going to have to be extra vigilant with the hand washing, etc.  And don't even think about getting near Stella if you are sick.  Those who know me well are probably laughing because I am the parent whose kids are always rolling around in the dirt with a runny nose.  This is going to be an adjustment!!!! 

We will be seeing a hearing doctor to monitor her hearing because one of the side effects of Carboplatin can be some hearing loss.  There are various other side effects that Stella could experience, but we will just deal with them if we have to.  We are also going to have a consult with Dr. Finlay out of Children's Hospital LA.  He is one of the leading doctors in pediatric brain tumors and Dr. Hastings is going to meet with him to discuss Stella and keep him in the loop.  I am glad he will be on our team. 

So, tomorrow Stella and I head to Oakland and will spend the night at my friends Moira and Daniel's house.  I am excited for Stella to get to play with their daughter Evie.  Then on Wednesday morning Stella will have a short surgery at Children's Hospital Oakland to insert her chemo port.  That is a permanent port that they put in her chest under her skin that hooks directly to a major vein.  That way they don't have to put in an IV every time she gets chemo - they just stick a needle into the port.  We will hopefully be back home by Wednesday night. 

Rob and I both have big stomach and head aches right now trying to digest all of this, but we will get through it.  I hope that once we get started and we get into a routine it will feel less stressful.  We just feel so bad for Stella and all she is going to have to endure over the coming year.  She has already been through so much and has no idea what is coming. 

Enough of my pity party. . .  this is going to have to be a productive week because next week is going to be busy!  Max and Eli start school on Monday (Max in first grade, Eli in kindergarten) and Stella starts chemo on Tuesday.  Send good thoughts to Stella this Wednesday during her surgery and next Tuesday during her first chemo appointment.  xoxoxo

Why I'm Writing This. . .

Some of you may wonder why I am writing, in a public blog, about Stella's illness.  There are many reasons.  One is that I think when Stella is older, after having gone through so much and surviving this (as I KNOW she will), she will have a lot of questions.  Even though I wish we were not going through this, since we are I hope this blog will help me remember the details of this time of our life so I can share it with Stella later when she is old enough to really understand. 

Another reason for keeping this blog is that I know a lot of our family and friends are thirsty for details and updates, and I realize that I have not been very good about responding to texts, messages, emails and calls.  Although it is getting easier every day, this is not something that has been easy for me to discuss and I don't really like getting emotional in front of other people.  It is also hard to tell the same story over and over again.  Hopefully people can read this blog to get updated on what is happening with Stella, and then if you have questions you can let me know. 

But the main reason I have decided to detail publicly what is happening with Stella is because I hope it will help other families in the future whose child gets diagnosed with this same disease.  There is so much scary information on the web - when we first got Stella's diagnosis I researched like crazy and mainly ended up freaking myself out.  I also felt like I wasn't getting the complete story from our neurosurgeon about what we could truly expect going forward.  Don't get me wrong, Dr. Sun is AMAZING, but I need to have more than a vague idea of what we are dealing with so that I can have a realistic expectation of what to expect going forward.  Frankly, I was shocked when Stella's tumor had grown less than one month after surgery and felt completely gutted.  In an attempt to avoid that feeling moving forward, I decided to try to find other parents dealing with this same disease so I could hear their stories.  This is a pretty rare disease, but I figured some of them had to have started blogs, so I started searching for blogs kept by parents who had children battling this same disease.  It took a while, but I finally managed to find a few and I reached out to four of these families via email. 

These families have been incredible.  Less than 24 hours after receiving my emails, I received responses and offers to talk on the phone from each of them.  Two of these families are in Boston and have created a foundation to raise money to research Pilocytic Astrocytoma in the hopes of finding a cure (a link to their site is on the left hand side of this blog).  I spent three hours on Friday talking to some of these folks.  They offered to put me in touch with some of the best doctors in the country working with Pilocytic Astrocytomas so that I could seek a second opinion, told me their stories and what I could expect, gave me tips and, most importantly, gave me a lot of hope.  I have been blown away by the generosity of these people.  I hope this blog will help others in the way these families have helped me. 

Out of the four families I have spoken with, all of their children are alive and doing well (a HUGE relief).  Two of the four families had to go through two rounds of chemo to get the tumor to stop growing in their child (the tumor didn't go away, but stopped growing), and their kids have had no new tumor growth for abut 5 years and are thriving pre-teens.  Another family has been through one round of chemo and has had no new tumor growth for a year.  Another family has been through four rounds of chemo, and their child's tumor keeps growing.  Hearing these stories has helped me really understand what we are dealing with and has made me feel more prepared.  I think it would be naive for me to think chemo is going to completely kill the tumor, but hopefully chemo will stop the growth.  I feel more prepared to go through multiple rounds of chemo if that is what it takes.  I know we have a long, hard road ahead, but having some realistic expectations helps me deal with the situation. 

In talking with these families, I received a lot of tips.  One thing that one of the parents talked to me about was the notion of accepting help.  It makes me EXTREMELY uncomfortable to ask for or to accept help from others.  Rob and I are very fortunate - we have good jobs, we have good insurance, we have amazing family who has gone above and beyond to be there for us during this time, we have a nanny. . . . the idea of accepting help just seems hard when we are so fortunate and I truthfully haven't felt like we needed it, or am unable to recognize it when I actually do need it!  I have been asked by many people if they can make us a meal, send Stella something, etc., and I have most likely not responded to your email/text or call because I felt uncomfortable.  The advice of one of the families I spoke with was that I have one of my best friend's act as a clearing house and anyone who feels like they want to do something for Stella, make a meal, etc. can contact them.  I understand people want to help and I really appreciate it, although it is completely unnecessary.  I also know it is not about me, and recognize that many of our friends and family members feel helpless and want to do something.  Because of that, I have asked my girlfriends Stephanie Mullen and Sarah Lofgren to act as my clearinghouse.  You can email Steph at stephaniemullen13@yahoo.com or Sarah at sflofgrens@att.net. 

Anyways, that is why I am writing this blog.  Thanks for reading and please keep Stella in your thoughts and prayers while we navigate this crazy road ahead of us.  xoxox

Scariest Time of Our Lives

As most of our family and friends now know, Stella has been diagnosed with a type of brain cancer called Juvenile Pilocytic Astrocytoma.  I have been asked by tons of people how we learned this news and what prompted us to get an MRI for Stella in the first place. This blog post explains how we discovered Stella's brain tumor the days thereafter until her surgery.  This is my attempt to get "caught up" on some of what has happened until now, so excuse the length.  A lot has gone on in the last six weeks . . .

I have always noticed that Stella has a bit of a lopsided face at times, but I thought that is just the way she was.  It was cute.  In late March, Stella had a fall and had some stitches above her left eye.  In April or May, Stella's face started showing signs of what looked like minor Bells Palsy on the left side of her face.  We thought it may be because of her fall.  After watching it for a while and noticing that it was not improving but was getting progressively worse, we finally took her to her pediatrician, who scheduled an MRI of her brain to take place on July 1.  By that time, Stella's left eye was not blinking very often and her smile was very lopsided. 

The morning of July 1, Stella had a bit of a fever, so the anesthesiologist suggested we reschedule until July 5.  Her fever had receded by late morning, so I took took Stella to her pediatric opthamologist appointment that she had scheduled the afternoon of July 1.  Her pediatric opthamologist noted that her left eye was having problems with lateral eye movement and thought there was pressure on the 6th and 7th cranial nerves.  He told me to make sure Stella did not miss her MRI on Friday.  Needless to say, I was a bit concerned after that appointment. 

Because of the opthamologist's comments, I called my pediatrician and asked if he could order the MRI to be read immediately and scheduled an appointment for 3:00 p.m. on July 5 with my pediatrician so he could give me the results of the MRI.  I was certain the MRI would show nothing wrong other than maybe some nerve damage due to her fall, but the opthamologist's comments made me a little worried and I didn't want to wait several days to find out the results. 

On Friday, July 5, 2013, we checked into the hospital at 7 a.m.  Rob's parents were in town visiting, and my wonderful father-in-law (a retired surgeon) came with me to the procedure.  They do the MRI's for the little ones first thing in the morning since they have to go under general anesthesia and cannot eat anything prior to the procedure.  We were done with the MRI and out the door heading home by around 10 a.m.  On the drive home my phone started ringing.  My phone was in the backseat and I could not reach it, but I probably received 4 calls on the drive home.  When I got home, I had a voicemail from Stella's pediatrician asking to call immediately, and also a voicemail from Rob (who had been at work up in Tahoe) saying that Stella's pediatrician's office had called him and they wanted us to come in immediately.  I called the pediatrician's office, they said to come in immediately and to bring Stella.  It was pretty clear then that something was wrong. 

Rob's dad, Stella and I headed to the pediatrician's office.  Rob got there shortly thereafter.  Once there, our pediatrician, Dr. Hall, came and told us that Stella had a 3cm brain tumor near her brainstem.  I don't remember much else of what he said, other than we needed to go to Children's Hospital in Oakland immediately and he had already been in contact with the neurosurgery department at Children's Hospital and they were waiting for us.  Dr. Hall had to decide whether to put her on a helicopter to transport her to Children's, or whether she was stable enough for us to transport by car if we wanted.  They would not let one of us ride the helicopter with her, so we told them we preferred to drive her to Oakland unless it was medically necessary for her to be transported by helicopter.  Thankfully, the Dr. said we could drive her.  Rob and I went home, packed a small bag and started driving. 

Talk about a long drive.  It took us about 5 hours to get to the hospital, and we hit traffic along the way.  Of course, we were searching the web the whole time for any information we could find based on the limited items we knew:  3cm brain tumor, brain stem, 6th and 7th cranial nerve, her age, etc.  Everything we found was terrifying.  By the time we got to the hospital at around 6:45 p.m., we were completely freaked out. It did not help matters that we kept receiving calls from the hospital along the way checking our progress to see where we were, how Stella was doing, and our ETA. 

It was not until about 9 or 10 p.m. that we were able to see the neurosurgeon.  Stella had been examined by several other doctors by that time and was pretty tired.  Dr. Sun, the Director of Neurosurgery came in and the first thing we asked was  - what are we dealing with, is she going to die?  Dr. Sun told us he believed this tumor was treatable and possibly curable and we were finally able to breathe again. 

We were moved to the ICU at about 11 p.m. that night and were grateful to be put in the isolation room, which is the only room with some privacy in the ICU.  We stayed in the ICU for the next nine days.  She was just monitored over the weekend and was put on a steroid (dexamethasone, I think) to reduce the swelling in her brain.  On Sunday, I met with Dr. Sun to go over her July 5 MRI and discuss the plan moving forward.  He showed me the MRI and explained that he would not be able to get the tumor out of the brainstem but would remove everything else that he safely could remove.  Based on the way the tumor looked on the first MRI, Dr. Sun thought it was probably a malignant tumor and was concerned about other tumors in her nervous system.  When I asked him what her chances were, he said "greater than 50/50" if this was the only tumor, and much less favorable if she had additional tumors in her spine.  She was scheduled to have an MRI of her brain and spine the following day - Monday.  Needless to say I was a nervous wreck.  Hearing "greater than 50/50" didn't make me feel very good, and that was the better option of the two discussed! 

Monday Stella had the MRI of her brain and spine.  This took almost 3 hours and required her to be under general anesthesia.  Thankfully, the MRIs showed her spine was clear and there were no other tumors in her brain.  Talk about a huge relief. . . .  As an aside, for those with little ones who have never gone under general anesthesia, let me warn you that as a parent one of the hardest things is watching your child get knocked out. The doctors will let you stay with your baby while they put the mask on until your child falls asleep. There is almost nothing worse than watching your child looking at you while they scream, cry and struggle to pull the gas mask off. All the while you are trying to console them, and then their eyes roll back and they go limp. Then you have to leave the room while they put in IVs, etc., and prepare for the procedure. It is awful. In the last six weeks, I have watched this happen on five different occasions! 

Stella's brain surgery was scheduled for Tuesday morning and throughout the day on Monday she was examined by multiple doctors in preparation for the surgery.  We feel incredibly lucky that Dr. Sun was her neurosurgeon.  According to everyone in the field, he really is one of the very best. 

On Tuesday morning, July 9, at 7:30 a.m., Rob, Stella and I walked to the surgery department.  We got to sit with Stella for a bit while we answered questions and spoke with the anesthesiologists and surgeons.  Stella's surgery was expected to last anywhere from 12 to 24 hours.  We were told not to be surprised or worried if at two in the morning they were not out of surgery.

For Stella's surgery there must have been 15 doctors and nurses in the room.  She had two neurosurgeons operating on her, and several persons who do nothing but watch computer monitors that are linked to needles they put all over her body to make sure they are not cutting out any essential parts of her brain.  Completely crazy.  We received calls every two hours during the surgery letting us know everything was okay.  During that time, Rob and I left the hospital and tried to pass the time.  We are so lucky to have such wonderful friends and family who have been so supportive during this time.  Our friends Stephanie and Fred went out to breakfast with us, and then I went for a walk with Stephanie and Moira down by the bay, while Rob and Fred went and passed the time doing something else. 

Stella's surgery finished much more quickly than expected.  We got a call around 5:30 or 6 p.m. saying that surgery was finished and they were sewing her up.  We met with her doctor in the cafeteria around 6:30 and they told us the surgery went better and quicker than expected.  They could not remove the portion of the tumor in her brainstem, but were able to get out almost everything else.  The best news was that both neurosurgeons felt like the tumor was low grade and slow growing, and not malignant as originally anticipated.  They cautioned us not to get our hopes up until we got the final pathology report, but we were still so relieved (the path report 10 days later confirmed the diagnosis of Pilocytic Astrocytoma).  Stella got back to her room around 9 p.m. and was already extubated, but heavily sedated.  She really came through the surgery like a champ. 

This post is getting way too long, so I think I will end this one here. More to follow. . .  Below is a picture of Stella just after surgery.  She had IV's coming out of both arms and both legs, a tube in her head, and a PICC line.  Poor thing.