Hospital stay day 2 has gone by slow and fast. The hospital never sleeps- there is always beeping, and hustle/bustle going on. We are so lucky to have such caring, attentive nurses. The surgeons came by this morning and were very happy with the incision site. When they came by in the afternoon they decided she could have the nose tube (which was emptying her stomach) removed! Yay! One less thing for Reba to try and yank out. When they pulled the long tube out, Reba clapped- she was so happy to see that thing go! After that nose tube was removed she got a Popsicle, and loved it. We can’t wait to feed her real food, hopefully tomorrow.

Yaya (Rachel my sister) came today and brought Zoe! We were so excited to see them. Zoe “worked” on Reba with her doctor kit. 

The pain is being managed with the epidural and IV pain meds. Maybe tomorrow they will start cutting back a little.

We are grateful and looking forward to every day healing and getting stronger.

   

 

Today has been a long day! Reba was in surgery for about 4 hours.

At the moment Reba has two IVs, an epidural for pain control in her back, a nose tube to empty her stomach, a catheter to empty her bladder, two bone marrow aspirates on her back hip bones, and a very large incision on her abdomen.

But….. The great news is that Dr. Bruzoni (the surgeon) let us know he removed about 75% of the tumor! Complete removal was not possible because the base of the tumor is too interwoven with the vital blood vessels. However it feels Soooooo good knowing that he was able to remove so much! 

Now we wait for the pathology report which will dictate the future of to treat or not to treat. Those results we should receive in a week.

In the meantime we will be here at Lucile Packard for 4-7 days depending on how Reba is doing.

Thank God for all the pain meds!!

   
 

Today 1/28/16 we met with our  Stanford Oncology Team to discuss Reba’s scan results.

Unfortunately the tumor has grown.

It is now measuring 4.7 x 6.1 x 6.3 where as before it was 2.8 x 4.1 x 2.9

The next step is surgery, Monday February 1st. (Also Nik and my anniversary…)

The surgeons met with us today as well. Dr. Bruzoni will be conducting the surgery. It will involve a large incision, hip to hip, so he can really get in there to attempt to remove parts of the tumor. The tumor is encasing many vital blood vessels, so complete removal is not possible. He told us he will remove as much as he feels is safe.

Reba’s pain management post surgery will involve a spinal epidural, for a few days. We will be at the hospital for approximately 4-7 days depending on how Reba is feeling.

We are devastated. We have been getting good news for several months, and the port was removed- this came as a shock to us.

Our Doctors let us know a couple scenerios. One is that we may need to put in another port and treat with more chemotherapy. The other possibility is sometimes they have seen tumor growth in the past with neuroblastoma and it can indicate that the tumor is differenciating, or maturing. They have no way of knowing until they biopsy the mass on Monday. They will then test the tumor and be able to tell us if the mass is favorable or unfavorable then we will go from there. They will also do bone marrow aspirations during the surgery Monday.

Please keep us in your hearts next week as we enter this nightmare.

Happy New Year 2016!

We are very excited about this year and have high hopes for good health.

Today (1/13) we were back at Lucile Packard for Reba’s radioactive isotope injection in preparation for her MIBG scan tomorrow. 

She also has an MRI tomorrow- which means she will be under anesthesia for a good part of the day tomorrow. We will get the results of the scans in 2 weeks. 

Because she no longer has her port, it was difficult to access her IV and the first IV lost the vein- ultimately it took the ultrasound technician to locate a strong vein- the downside of being port-free.

Counting our blessing every day and hoping our family and friends are in good health.

 

 
 

 

Dear Friends and Family,

    Today Reba had surgery to remove her port!!! We are so thankful to share this news as it means treatment is over for now!

Reba will continue to be under the careful watch of her fantastic doctors and have MRIs and MIBGs (the next ones are in early January).

Because her port is now out, if/when Reba gets a fever we no longer need to go to the hospital for IV antibiotics! 

Over this past Thanksgiving weekend we have had time to give thanks and reflect with gratitude. We are so grateful for many things. Neuroblastoma can slip through the cracks and grow for years before detection – we are so grateful our pediatrician sent us to Stanford “just to be sure.” All we really have is our health. As our little Reba has gone through treatment and is now in a more watchful stage, we so appreciate the fragility and strength of life and the pain that comes with the price of love.    

 
 

  

 

Results from the MRI show the tumor is continuing to shrink!

It currently measures 2.8 x 4.1 x 2.9 cm, previously was 3.0 x 5.3 x 4.0 cm.

Yippee!!!!!!!!!!

They are talking about removing the port soon, which is very exciting as well. 

Another MRI and MIBG is ordered in 6-8 weeks.

Since September’s post, we have had a couple routine follow-up Doctor visits, and Reba’s blood continues to have normal levels, although the tumor markers in her urine are still a little elevated.

Today Reba had an MRI, and Thursday we will get the results. We are hoping the tumor has continued to shrink on it’s own! Please keep her in your thoughts.

We will post results Thursday when we know.

 

 
 

 

We met with Reba’s doctors on Thursday (9/17) to discuss the results from the MIBG.

The MIBG scan shows the regions of the body where the neuroblastoma is active and can determine if the tumor has spread or not. There wasn’t much change since the last scan. The doctors were happy with the fact that the tumor is stable and is not growing.

Meanwhile we had Reba’s first birthday party (super hero party) and our hero Aurora came with her family! Aurora has beat neuroblastoma and is cancer free today. We can’t wait to be there one day.

 

 

 

Dear Reba,

One year ago today at 9:20am you came into the world and filled our family with more love than we thought possible.

We never would have imagined that on your first birthday we would be at the hospital with you getting your third MIBG scan to see how the tumor is doing.

You have been through a lot in the last six months – medically, more than a lot of people.

You are so strong, such a fighter. You have taught us how to live in the moment. 

Despite everything you’ve had to deal with, you are reaching all the “normal” milestones and are impressing us all daily. You took your first steps a few days ago. Aside from ‘mama’ and ‘dada’, your first word was ‘backpack’. You endured a fever yesterday when both of your top front teeth broke through, the same day as your radioactive MIBG injection. 

We are so excited to celebrate your birthday with family this weekend. We love you to the moon and back.

Love,

Momma and Dada

   
 

On Monday (8/17) Reba had an MRI to check the size of the tumor. She was put under general anesthesia for the scan. It was a long day but everything went pretty smoothly.

 

 
Today we went back to Lucile Packard to get an ultrasound on Reba’s heart (the chemo, specifically doxorubicin, can have a negative impact on the heart). The results were really good- no damage recorded!

Then we met with Dr. Mavers who had more good news. The MRI from Monday shows that the tumor has shrunk a little more. It has roughly shrunk 84% from its original size. The tumor is currently measuring 3cm x 5.3cm x 4cm.

And one more piece of good news- the urine tumor marker levels have also come way down. Her VMA is 27.1 (normal is below 25) and her HVA is 65.7 (normal is below 35). While she is not in the normal range yet, she is getting close. In April her HVA was 714.8!!

Everyday Reba is getting better and stronger. Our gratitude to God and the Universe is immeasurable.