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.