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. 

Great break, but right back into chemo. . .

We had a wonderful break from chemo and took a much needed trip to Florida to rest and recoup.  Rob's parents live out there and had us come out for about five days.  We took the kids to the beach, looked for sea shells, and mainly relaxed.  It was pretty wonderful and was our first real break since Stella was diagnosed and our lives became the whirlwind it is today. 

Stella jumped right back into chemo as soon as we returned and is now in the "maintenance" phase, which is 8 cycles of 4 weeks on/2 weeks off.  Yesterday we finished her second week of her first cycle.  She did great.  Her oncologist is very happy with her ANC count and says she is right where they want her to be. 

Things are settling into a fairly normal routine and we are all feeling good, but there are still moments that take my breathe away and make me realize how truly scary and insane this whole thing is.   As you all know, Stella's left side of her face and her left eye are partially paralyzed due to the pressure the tumor is putting on her 6th and 7th cranial nerves.  Since we have entered into this cancer world I feel like I see and am aware of so many other children dealing with this, and different types of cancers.  The scariest of all is a type of brain tumor called a diffused intrinsic pons glioma, which is a type of brainstem glioma.  The mortality rate with that type of tumor is almost 100% and children are usually given a 9-12 month life expectancy upon diagnosis.  Stella has a brainstem glioma, but thankfully it is a pilocytic astrocytoma.  I was speaking with our oncologist about how I've seen photos of several children with DIPG's who have the same facial symptoms (palsy on the left side of face and same eye problems) and I was wondering why Stella's symptoms are so consistent with theirs.  She told me that when they first saw Stella's scans in July (when we were first admitted) they were not sure if it was a DIPG or something else, but that Dr. Sun was pretty sure the tumor origin was not in the pons, but just growing into that area, which made all the difference.  That just blew me away.  I am so, so, so thankful that we are not dealing a DIPG and my heart just breaks for all of the families out there that are.  As awful as all this has been, and as sucky as it is that Stella has to go through awful chemo treatments, I know that it could be SO MUCH worse for our family and we are just thankful that Stella's oncologist fully expects her to survive this. 

I feel so compelled to do what I can to help raise awareness about this awful disease and raise funds for research, assistance for families, etc.  It is just so, so hard to do when we are simply trying to get through each day, go to treatments, schedule and be there for all of Stella's PT, OT appointments, eye appointments, take care of our other kiddos, and work full time.  I am thinking though of trying to do something like organize a race (maybe a 5 and 10K) and concert to raise funds for a few organizations that are near to and dear to me - the Northern Nevada Children's Cancer Foundation, PLGA (which raises money to research cures for pilocytic astrocytomas), and the Smashing Walnuts Foundation, which is the foundation created by the family of Gabriella Miller, who recently died as a result of her DPIG and whose tumor put pressure on her 6th and 7th cranial nerves causing a facial palsy that looked almost identical to Stella's.  The Smashing Walnuts Foundation is doing some great work right now trying to get additional federal funding directed to pediatric cancers.  I am thinking that a fundraising run/concert would be great next year in September or October, when we have completed Stella's chemo and have nice weather. I'd love to hear your ideas about this. . . . :-) 

As always, thank you for the love and support.  I will try to post some pictures from our vacation soon. 

Stella's November 1, 2013 MRI Results

Stella had an MRI on Friday, November 1.  We received the written results a few days later and were very happy to find out that the tumor does not appear to have grown.  The reading of the MRI says that the more anterior portion of the mass "appears to be very slightly smaller than on the prior exam of August 2, 2013  Previously, this measured approximately 12 mm anterior-posterior and now approximately 8 mm."  I'm no doctor, but the way I read this indicates no new growth and a very, very small reduction of a portion of the tumor.  That is great news.  The results also say that there are no new lesions detected, and that there is not significant abnormal area of enhancement.  This is also great news.  My limited understanding of the significance of watching for enhancement is that if the tumor is absorbing the dye that they inject in you (and you are thus seeing areas of enhancement), it indicates the tumor may be in a growth phase.  So, again, good news that there is not "significant abnormal area of enhancement" (although the lawyer in me has mixed feelings about this since the use of the words "not significant abnormal area" means there must be some abnormal area of enhancement, or else it would say no enhancement at all. . . ).  I will understand more once we are able to meet with Dr. Sun in early December, but we are feeling very grateful right now that Stella's tumor appears not to have grown, and has even shrunk some. 

The MRI also noted a pineal gland mass of doubtful significance.  Not really sure what that is all about, but I don't remember hearing about a pineal gland mass before. . . .hmmmm.  My research shows that it is not anything to be concerned about at this time, but still REALLY?!  Poor Stella and her brain.  I am remaining positive though about this MRI.  There was no growth in her tumor, and that is GREAT!

We are currently on a two week break from chemo and leave tomorrow to go to Florida for six days for a much needed vacation.  Our lives have been a whirlwind since we received Stella's diagnosis in July, and it will be nice to sit on the beach, search for sea shells with the kids, and just relax.  We are pushing our vacation to the limit a bit though!  We have to take Stella to chemo to start her next round on the same day we get back!  :-) 

Below are a few cute pictures of the three kiddos.  We take family photos once a year and took them this year at Sand Harbor.  I love these pictures of three of them together.  Max and Eli sure love their sister.  We will probably use one of these on our Christmas card. . . . so enjoy the preview!!
 

Through week 10 and ready for a break!

Today Stella finished up her tenth week of chemo.  Now we get a two week break - YAY!  Stella did awesome today.  It was a packed house and there were four little girls aged five and under getting chemo at the same time.  Eight weeks ago just being in that room watching these little girls would have had me teary eyed. . . now this is just becoming part of our life and we are all getting used to it.  We are very ready to have a break though, and Stella's next chemo treatment is not until November 11.  Yay, yay, yay! 

Stella still has all of her other appointment, and an MRI, in the meantime.  Her MRI is on November 1 and we are anxious to see what is happening with her tumor.  I am feeling cautiously optimistic. . . her eye seems to be looking a little bit better sometimes.  It is so hard to really tell though.  One good thing is that her physical therapist is feeling (cautiously) hopeful about Stella's ability to regain movement in the left side of her face.  She did a bunch of work with her and determined that, while Stella can't currently move that side of her face, she can definitely feel that side of her face.  That is a good thing, and hopefully will translate into recovery of some facial movement in the future.  Right now Stella sees a physical therapist once a week every other week and an occupational therapist once a week on the alternating two weeks.  Crossing our fingers that all of this will help. 

Below are a few pictures of Stella at chemo over the past two weeks. 

Rob went with Stella to chemo last week.  I was in the bay area for a quick business trip and got home in time to sneak into chemo and snap this cute picture of the two of them.  Stella loved hanging out with her daddy. 

Making bracelets today at chemo.  :-) 

Drinking her "coffee" while lounging.  I order Stella the vanilla steamed milk and she calls it her coffee.  Pretty cute! 

At gymnastics this week.  Stella is having some problems with balance and depth perception because of her eyes, so we are hoping that the gymnastics will help.  She loves it. 

 



  

Through Week 8. . .

Yesterday Stella completed week 8 of chemo.  She did great as usual.  I say it every time, but I am constantly amazed by her.  We are back to the loooong chemo days. . . and are at the doctor's office for approximately 5-6 hours each treatment.  This is how it will stay for the remainder of  her chemo regimen, but that is okay because we get to spend lots of quality one-on-one time with Stella!  :-) 

I've been a bit bad about keeping up with weekly posts.  We don't get home until about 5:30 or 6:00 on chemo days, and then its right back to work the next day trying get caught up, so I've been a bit pooped out and not as motivated to get these posts written.  BUT, I am going to try to do my best to get them written at least every other week. 

Stella's MRI date has changed.  It was scheduled for this Friday, but Dr. T changed it to November 1 so that she will be completely done with her initial 10 week chemo phase and we will have a better idea of how the chemo is impacting the tumor.  That is fine with me.  I would rather get a good indication of what is happening then go early. 

One thing I am really excited about is that we have an appointment next Friday with Dr. Finlay, who is known as one of the best oncologists in the nation working on the type of tumor Stella has.  He works at Children's Hospital LA, but consults with Children's Hospital in Oakland.  We are going to Oakland to meet with him and go over Stella's scans.  We feel very blessed to have a wonderful medical team and have been very happy with the care Stella has received from Dr. Sun, Dr. T and Dr. Hastings, but the more brilliant minds we can have on Stella's case the better!  :-)  In all, we feel very lucky to live so close to Oakland and have access to their great doctors.  And we are so unbelievably lucky that Children's Oakland operates a clinic in Reno so that we don't have to go to Oakland once a week for chemo!!!  :-) 

As I have said in previous posts, we are also unbelievably lucky to be surrounded by an amazing community of family and friends.  The Northern Nevada Children's Cancer Foundation gave Stella a beautiful custom made superhero cape for her to wear to chemo, and she LOVED wearing it all day yesterday.  NNCCF does unbelievable things for a lot of families.  And today when I got home from work, I found a GIANT box sent from my former colleagues at Sonnenschein Nath and Rosenthal filled with art projects and other goodies for Stella to enjoy during chemo, as well as a bunch of other unbelievably thoughtful items.  To say I was blown away is an understatement.  I have so many thank you cards to write. 

Below are a BUNCH of pictures from the past few weeks - enjoy!   

On our way to chemo for week 7 and we, of course, have to hit Starbucks!  :-)  Stella put this headband on herself and insisted on wearing it.  She cracks me up. 

Hot chocolate, I swear!  I've created a Starbucks addict. . . like mother, like daughter, I guess! 

Stella is all about stickers, glitter glue and coloring at chemo. . . any surface will do, even her feet and legs.  :-) 

Stella and Leslie from NNCCF.  Leslie is such a sweet woman.  Her daughter survived lukemia and now she works with the NNCCF assisting other families.  The NNCCF is having a superhero cape made for every kid they work with, and Leslie gave Stella one yesterday.  It is awesome. 

A cute picture of Stella's superhero cape headed to chemo week 8.  :-) 

Getting chemo yesterday.  My big, brave girl. 

Chatting with one of her nurses, Keri, before starting her chemo.  Stella likes to check out all the medical supplies and be very involved.   

For the first time Stella actually took a nap during chemo!  :-)  It lasted about an hour, but it made me so happy!!!

Opening the amazing box of goodies from my friends at SNR.  Unbelievably sweet. We are going to make these goodies last for many, many weeks at chemo! 

Pediatric Brain Cancer Awareness Day

Today is Pediatric Brain Cancer Awareness Day.  On this day, I just want to take a moment to thank everyone that has been there for us during this crazy time in our lives.  I think I can speak for both Rob and I when I say that it has been the most difficult, painful and emotional several months of our lives.  In spite of that, in many ways (and I know it sounds weird) these last few months have also provided some of the best, most eye-opening times of our life. 

I think that you never really appreciate the depth of your love for your family, or your families love for you, until something awful happens.  This diagnosis, and the ten days we spent in Oakland at the hospital, has made me hold my kids tighter, hug them longer, and appreciate the everyday "normalness" of our day-to-day life.  It has also made me appreciate my parents and my in-laws more than I did before.  They have been there for us wholeheartedly since we received Stella's diagnosis.  I know it must be incredibly hard for them to watch their children and grandchildren go through this awful thing, and they have been pillars of strength for us.  We are blessed. 

Through this, Rob and I have been able to witness a strength of character that we didn't know it was possible for a two year old to possess.  Stella has been so amazingly strong.  She has been through more in the last three months than I, or just about anyone I know, has been through in their lifetime.  In just the past three months she has dealt with a serious brain surgery, has had seven MRI's, chemo, nausea, facial paralysis, and she has been poked and prodded with painful needles more than any child should be.  These things have been scary for her, but she has rebounded from each with an amazingly upbeat attitude.  I truly don't know how she does it.  She has also demonstrated a sweet, caring heart.  Stella has been the recipient of so many sweet gifts, and we have been taking them to chemo every week to keep her entertained.  She happily shares her art supplies, stickers and other items with the other children to help brighten their day at chemo.  It has been pretty amazing to watch her spread happiness to other children going through tough times. 

We have also been blown away by the support of our friends and community.  While we probably look like we have it (sort of) together to others, this has been an extremely difficult time.  During this time, we have felt so loved and supported by so many and we will never be able to adequately express our thanks.  We had friends that came to the hospital to be with us during the scariest of times and just wanted to be there. . . no words necessary.  We had friends that we haven't talked to in YEARS reach out to us to offer us a place to stay, friends that brought us meals, friends that have sent emails and messages of encouragement and support, friends and acquaintances who have shared personal and similar stories in order to give us hope, and friends and neighbors that understand that this hasn't been easy on Max and Eli (Eli especially) and have taken a special interest in watching out for them.  Stella has received prayers from friends and people we have never even met all over the world.  She has had entire churches praying for her (wow!).  These things have meant the world to us.   

So, while I wish this was not happening to Stella and our family, we are going to continue to press forward and keep focusing on the GOOD.  Thank you to our family, friends and community for being there for us.  xoxoxoxoxo

Chemo 5 and 6 complete!

Stella did great in her fifth and sixth chemo treatments.  These were short ones because she only had to get Vincristine these past two weeks.  This means that there was no need for her to be attached to a bag, and they only had to access her port, take some blood and then push in the Vincristine drug.  All in all, that process takes about 5 minutes.  The actual time at the clinic was about an hour, though, since she had to have all of her vitals checked, meet with the Dr., etc.  

After her chemo this past Tuesday I took Stella to my office for a bit and then we went over to visit with the folks at the Northern Nevada Children's Cancer Foundation.  Stella loves going to my office and visiting with everyone I work with.  It is very cute.  She also had a great time at NNCCF.  The staff there is absolutely amazing and treated Stella like royalty. 

Stella seems to be doing well overall, although her appetite has been limited and she lost a pound this week.  Her hair is starting to thin out, and I pulled out a little clump of it the other day.  :-(  We will see if it continues to fall out, or if it only thins.  Overall, Rob and I continue to be blown away by the strength of this little girl. 

Yesterday my mom asked Stella how chemo went.  She showed my mom her port and said the doctors put medicine in there.  My mom asked Stella if she liked going to chemo and she said "yes, because my mommy goes with me."  That makes me so happy and sad at the same time. . . .

Next week we are back to the all day infusions, and that is how it will continue for the remainder of the year.  Needless to say, we will have lots of uninterrupted time together for arts, crafts, and other fun activities.  Below are a few photos from the past two weeks.  :-) 

Stella and I at Chemo # 5. 

This is what happens when the nurse walk in with the needles, etc.  Stella get super scared and burrows into me.  The way we are now accessing her port is to have her sit on my lap.  We pull up her shirt and I hold her arms and head still while they clean the site, access the port, draw blood and then either hook her up to the IV line or (in the case of the last two weeks) just push in the drug.  She screams the entire time, but calms down pretty quickly once it is over. 

Passed out in the car on the way home.  Even the short visits are exhausting for her and she always sleeps on our drive home.  Good thing the drive is an hour!

Looking sassy before Chemo # 6.

And still smiling after her chemo treatment was completed!  :-) 

4th Chemo Treatment Done!

On Monday, September 9, Stella completed her fourth chemo treatment.  She did great, but the chemo is getting to her a bit.  Her ANC was down to 1000 and it was harder to keep her happy for the many hours we were there.  Overall though, she did awesome, and Stella's oncologist says her numbers are exactly where she wants them to be.  The ANC is a way to measure her immune system, and a normal ANC is around 3000.  When it gets below 500 we have to keep Stella away from most people because she is at serious risk of getting sick and having to go to the hospital. 

Thankfully, the next two weeks of treatment will give her a bit of a break.  She will only get the Vincristine drug, which is quick to administer.  After those two weeks we will be back to the four hour long infusion for four weeks to finish out this initial 10 week cycle. During those four weeks she gets both Vincristine and Carboplatin.  The reason it takes so long is because the Carbo can harm the kidneys and liver.  To avoid that, they do a one hour IV fluid flush before they give her the drug, then the drug takes an hour, then they do a two hour IV fluid flush after the carbo - four fun hours of being attached to an IV.  Stella's next MRI is on October 11, and we are anxious to see if there has been any change in the tumor.

Below are a few pics of Stella during this treatment.  As you can see from the pics below, she does not like it when the nurses have to touch the IV tubing for any reason!  She does great though with her blood pressure, temperature, and other vitals checks.  :-)

Stella likes her nurses, but NOT when they do anything related to her port, or the IV tubes going into the port. 

Not a happy camper. 

Checking blood pressure?  No problem!

 

Still smiling through all of this.  My tough girl. 

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. 
 

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.