We met with our oncology team today (7/21/16) to discuss the new plan from here. We know from the biopsies that the tumor is showing signs of differentiation but also showing signs of immature neuroblastoma cells as well as scar tissue. 

The urine test showed about the same numbers although down slightly (which is good). 

The plan moving forward is to do two more cycles of chemotherapy, using two new drugs- vincristine and irinotecan. The vincristine is given only on the first day of the cycle and the irinotecan is given via infusion over 5 days. The sixth day she will get the Neulasta injection. Each cycle is 21 days. After the two cycles they will image the tumor again with MRI to see what it’s doing. The main side effects can be severe diarrhea and tingling/numbness of the extremities. We are praying she can tolerate the drugs well. It’s scary giving her new drugs, but we are told these drugs are better tolerated than other chemotherapy drugs, including drugs she has already gotten in the past. We are really hoping this chemo will cause the tumor to further differentiate until it has no more power.

  

  Today we met with Reba’s oncologists at LPCH to discuss the results of her biopsy from last week. 

We were very happy to hear that the two samples both contained differentiated cells. However, the samples contained cells that are not differentiated as well, meaning some of the cells are still active and could possibly cause the tumor to continue to grow. 

The tumor markers in her urine have been decreasing over the past few months but a minor rise was detected last week. It’s not clear to the doctors whether this is significant or not. Tomorrow we will bring in another urine sample and if the tumor markers are still the same or any higher, the plan will be to start a new chemo for 2 cycles. If by some chance that the tumor markers are decreasing, the plan will be to start a drug called Isotretinoin (cis-retinoic acid), which is also used for acne treatment. In Reba’s case, this would drive the cells to further differentiate. 

If chemo is needed, it will most likely start July 25. The two drugs would be Irinotecan and Vincristine. If this is the next step in Reba’s treatment, the two cycles would be followed by an MRI and then the Isotretinoin to drive cell differentiation. 

Today (7/5/16) Reba had surgery. Going into the procedure our surgeon Dr. Bruzoni told us he would attempt to biopsy the mass with minimal invasion, using laparoscopy and a guiding camera through her belly button. He was able to gather samples but the pathologist was not certain of the tissue so Dr. Bruzoni had to then go with plan B and make a larger incision (reopening the old scar from the last surgery in February) and get three larger samples.

So poor Reba has 5 incisions at the moment.

Her pain is being managed around the clock. We are staying here at LPCH tonight and they will assess her tomorrow. Hopefully we will get a better idea of when we can go home in the morning. 

We will meet with our oncologists probably in about a week to discuss the results and plan.

The tumor is still the same size, measuring at 5.2 x 3.5 x 5.8 cm.

The next step is a surgery next Tuesday July 5 to gather a couple samples from the mass for study.

After they analyze the data, our team will let us know the next step.

  

Yesterday (6/27) Reba had her MRI. It was originally scheduled for Tuesday, but they called over the weekend and changed it to Monday. Her appointment was for 10, but they were running behind so her scan didn’t begin till after 1. Somehow we got through it (even though she was starving), and everything went well. She handled the anesthesia well and loved her Popsicle when she woke up.

We are back Thursday for the results of the two scans and new plan… Please pray for Reba.

   
 

Today was a long day!

Reba is a super trooper, that’s for sure. They were running late, so Reba’s scan was delayed about an hour and a half. (Pretty tough after starving all day.) The scan went well and they got the images they need so Reba doesn’t need a rescan tomorrow (thank God).

During the dressing change, the stitch broke on Reba’s PICC line and so when she woke up from anesthesia they had to put a new stitch in. This was not very fun, especially after just waking up from anesthesia.

But we are done for today!

Back on Tuesday for her MRI and then results and plan next Thursday.

   
    

 

Today (6/22/16) we were back at LPCH for the radioactive isotope injection in preparation for Reba’s MIBG scan tomorrow.

We premedicated with Benadryl and Prednisone and thankfully Reba did not have a reaction to the injection like last time!! So that’s good. 

Tomorrow her scan is at 3, so she will be a hungry baby! She probably will not be able to eat until after 5.

Her MRI is next Tuesday, and next Thursday we will meet with her Doctors to discuss the results and new plan.

   
   

Done!

We are glad this week went well and are hoping the chemo does it’s job at knocking the tumor down!

Tomorrow Reba will have the Neulasta injection and then we will have a week off (home nurse will come twice), before returning to LPCH for the scans and surgery.

  

Yesterday and today went smoothly. We feel lucky to be surrounded by great family and friends who support this process. Reba’s appetite has been great and the nausea is under control. Back at it again tomorrow. Really looking forward to the weekend.

 

  

   

Today 6/6/16 we were back at it for cycle 6 of this chemotherapy recipe- Cyclophosphimide and Topotecan.

Day 1- 10 hours (with driving/traffic.) Lord, help us get through this week, one day at a time!

After this cycle Reba will have another MRI and MIBG to see what the tumor is doing. At that point they will schedule another surgery as well.

Based on what the pathology of the tumor is from the surgery, our oncology team will be able to construct the next best plan of action.