Long Overdue Stella Update

Recently I have received a few emails from parents whose children had been diagnosed with a brain tumor who were scouring the internet for any information they could find and were looking for someone who had been through something similar.  I did exactly the same thing when Stella was first diagnosed, and found such comfort in talking to other parents who had been through this and whose kids were doing well.  Imagine my surprise when I realized it had been nearly 2 1/2 years since my last blog post.  Where did the time go? 

Thankfully, we are in place where things are really, really good.  Stella is healthy and happy, and after 3 years of constant medical appointments, surgeries, etc., we are in a really nice quiet period that hopefully lasts the rest of Stella's life!  Here is an update one what has happened since my last post, way back in November 2013:

Stella completed chemo on October 1 2014.  Overall, she handled chemo like a champ.  We had a few episodes where she developed an allergic reaction to Carbo, and we had to do a longer drip, but we got through it.  It was interesting though, while her hair thinned out some during chemo, she really kept a lot of her hair.  However, it really started to fall out in large quantities after chemo ended.  That was a bit of an unexpected blow!   Here she is on her last day of chemo with her awesome nurse. 

While Stella was in chemo my mother started having some medical issues (which ultimately required a liver transplant in August 2014), and I found out I was pregnant with a baby boy a few months before this, so it was a busy, busy time in our lives. (Stella's baby brother was born on March 18, 2015).  This is probably one of the reasons blogging fell by the wayside.  :-) 

When Stella finished chemo, we took a much needed vacation to San Diego (LEGOLAND, Zoo and Beach) and threw a huge "rebirth"-day party for Stella.  It was awesome.  We also put her back in preschool, which she was super happy about.  Here she is on her first day of preschool:

In mid-December 2014 Stella went on a Make A Wish trip to Disney World.  It truly was the best trip ever.  We spent time at Disney and Universal Studies, and the kids had the best time ever.  The Give Kids the World resort is such a special place.  Here is a link to a video we made for Stella's Make a Wish trip:  https://www.youtube.com/watch?v=nn2waZvqATo

Since that time, Stella has had MRI's every three months.  So far, so good.  All of her MRI's have come back stable.  We are so happy.  Her docs are about to switch Stella to an every 6 month schedule, which will be nice.  She still has to go under general anesthesia every time she gets an MRI. 

The biggest thing we have dealt with since Stella completed chemo is working on addressing the "collateral damage" (as I like to call it) that the brain tumor caused.  The left side of Stella's face is paralyzed as a result of her brain tumor, and her left eye turned inward and has no lateral eye movement, so it was basically stuck in that position.  Here is a picture of Stella on Thanksgiving 2014 (about 7 weeks after chemo ended). This shows the hair loss and facial paralysis issues we were dealing with:

We did a ton of research and interviewed several doctors who specialized in working to restore some movement to the face.  Right after Christmas in 2014, we flew to Baltimore to meet with Dr. Patrick Byrne at Johns Hopkins.  We really liked him and decided to move forward with a two step facial reanimation surgery called a cross facial nerve transfer (or gracilis muscle transfer).  In February 2015, my husband flew with Stella back to Baltimore and she had the first stage surgery where they took nerves from the back of her left calf and moved them to her face. 

 

After this surgery, Stella had a short surgery to have her port taken out, had a dental surgery (because some of her teeth needed some work on the side where her face is paralyzed), and we also did a surgery to straighten out her left eye that was stuck inward. Lots and lots of medical procedures (in addition to MRI's every 3 months). The eye surgery made a huge difference, and you can see from the below pics the positive impact.  The left is shortly before the surgery, and the right is a few hours after.  Her left eye will never be able to move laterally, and she still has trouble blinking that eye, but if you are looking at her, her eyes look pretty normal. 

Needless to say, it was a busy time, and during all this, I had a baby in March 2015. He is the cutest.  Here are some family pics from early November 2015. 

Next, in late November we went back to Baltimore to do the second stage surgery for the cross facial nerve transfer.  For this surgery they took a muscle from her inner thigh and grafted it to the (basically) dead muscle in her face, then attached the nerves that were previously harvested to the muscle. That was a tough, painful surgery, and required us to be back in Baltimore for 2 weeks. It then takes at least 6 months before you see some movement, and we are only now in the last month starting to see some movement on the left side.  Her tone, however, is so much improved.  Here is Stella getting ready to go into this surgery, and then shortly after her second surgery in November:

This was (hopefully) the last big surgery this girl will have to go through.  It has now been almost three years of tough medical issues, but we are now (fingers crossed) through it.  Stella is looking great and is a very happy, confident girl. Here she is about a month ago.  Her hair is growing, and there is a slight lift on the left side when she smiles with her mouth closed.  When her face is at rest, it looks very symmetrical. 

That is pretty much the abbreviated version of what has happened over the course of the last two years.  We are extremely thankful that Stella is now in good health and thriving.  She goes in for an MRI next week, so fingers crossed all continues to look good. 

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. 

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.