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. 

Done With Stella's Third Chemo Treatment

On Tuesday Stella had her third chemo treatment.  She did great.  While she still cries a lot when her port is accessed, it seemed to be a bit less scary for her this time.  Crossing my fingers that it continues to get easier.  Stella also kept repeating her mantra of "I am doing awesome" and "Tussy is doing awesome" throughout the day.  :-)  Tussy is her five year old friend who is also getting chemo.  It is pretty adorable to hear her little two-year old voice say that over and over, and she amazes me with how tough she is. 

It has been nice getting to know Tussy and her mom.  Tussy has a JPA just like Stella, only in a different location in her brain.  This is her second round of chemo.  In the last 4 years of dealing with this and getting multiple rounds of chemo, we are the first people they have met that have the same type of tumor.  Just shows how rare this type of tumor is. . .

So far, we have been able to avoid Stella getting sick again.  Thank goodness for Zofran!  We give her a dose as soon as we get home from chemo and again right before she went to bed.  That seems to do the trick.  She is also getting more comfortable with her port.  She is now happy to show people her port and will lift up her shirt to do it, but will not let anyone touch it or her shirt in that area.  She is constantly saying "don't touch my port" to me. 

Rob was able to come hang out with Stella during this chemo treatment and Stella loved that!  I've posted a pictures below.   

 

Getting settled in!  We went to Michael's craft store and stocked up on all sorts of fun arts and crafts for Stella.  She loves it. 

Drawing some glitter glue pictures with Daddy.  :-)  Rob had a court appearance in Truckee and then headed straight to Reno to spend some time with Stella. 

Blowing kisses goodbye. 
 

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.

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