Reba Zumberge

Today 12/27 we were back at LPCH for an MRI. All went well, in fact they took her early! This never happens…. So that was very nice. She handled the anesthesia fine and now we are heading home.

Next Tuesday we meet with her oncologists to discuss the results of the MRI and the next step.

Reba has completed 4 cycles of the isotretinoin so far and may need two more cycles of this particular drug, we’ll find out next week.

In looking back at 2016, Reba has had 12 cycles of chemo, two major surgeries and a lot of medication. It has not been an easy year. But through it all we are lifted up by the support of our Doctors, nurses, family and friends. We are extremely grateful for all the help, support, prayers, well wishes by all and are very humbled by the delicate reality of existence. 

Today 10/31/16 we were back at LPCH for the results from last week’s MRI. 

There is no significant change in the mass. This is good news- we are so glad it is not growing! Of course we want it to shrink but are so thankful it is not growing. The mass is measuring 4.7 x 3.2 x 6.3 cm.

The next step is to continue two more cycles of the isotretinoin and then recheck the mass with MRI December 27th.

Because it is Halloween the girls dressed up and after we went to a pumpkin patch that had a petting zoo and a bouncy house!

Today we were back at LPCH for an MRI. Reba has had two cycles of the isotretinoin so now is the time to look and see how the tumor is responding to the new drug- hopefully very well!

Reba handled the anesthesia just fine and next Monday the 31st we will be back for the results.

Please pray for excellent results…

After 8 months of flushing daily with saline and heparin, dreading the weekly dressing changes, and avoiding contact with water, dirt, sand, etc., Reba’s doctors gave the OK for the PICC line to come out! Because she is on an oral medication for now and her next scan is in 6 weeks, her doctors relented to our begging!

Her home nurse Caitlin came over with about an hour’s notice and pulled it out just one day before Reba’s 2nd birthday party. 

We are overjoyed with this- it’s hard to convey the day to day struggles of a PICC line with a 2 year old. She is actually very good about it, but after 8 months her arm needed a break! Our greatest enjoyments at the moment are pool time and bath time!!

Right now we are filled with gratitude: To nurse Caitlin who came basically last minute to remove the PICC and to Reba’s doctors who were flexible and compassionate.

 

  
  

  
 

Today is childhood cancer awareness day. I knew it was childhood cancer awareness month but didn’t know it was the day today, September 8th until we got to LPCH and saw the decorations….

Today 9/8 we were back at LPCH for the results of last week’s MRI and MIBG (9/1/16.) The results showed that the tumor is still about the same size. Although we want the tumor to shrink (!) it is good that the tumor is not growing!

At this point Reba is now, starting today on an oral chemo called isotretinoin. Oddly this drug is also known as accutane- a drug used to treat acne. In a Petri dish isotretinoin kills neuroblastoma cells and it has had success in patients with neuroblastoma as well. Hopefully the isotretinoin will help to further differentiate the neuroblastoma cells. Our Doctors are projecting her taking this Med for up to six months. They will continue to monitor her closely.

The challenge in administering this Med is it is a pill that has to be swallowed twice a day- which is hard for a two year old. But we are happy to report tonight Reba swallowed the first pill with yogurt like a champ! We hope this continues!!

Reba has had her PICC line in since February- keep your fingers crossed that she may be able to get it out soon…

We are so glad this week’s infusions are over! Tomorrow (8/20) is the neulasta injection.

The chemo this week has made Reba sick- today she vomited 7 times! Even with the antibiotics and zofran she has still been sick. But thankfully the nausea should pass now.  What is amazing about Reba is she will get sick and then move on. Her soul is so cheerful and happy despite it all. She is such a good example to us daily.

The next step is the MRI in two weeks and a new plan from there.

Today 8/15/16 we are back at LPCH for another cycle of chemo. 6 days; today she is getting the vincristine and irinotecan. Tuesday through Friday she will get irinotecan and Saturday the neulasta injection.

After this cycle they will do another MRI and possibly move to an oral chemo which would mean the PICC could come out! Keep your fingers crossed.

We are grateful for a weekend filled with family and friends celebrating Zoe’s 3rd birthday. Good days are soooo good.

Today is Wednesday and we just finished the third day of chemo for this cycle. Reba does not feel great, but is happy when we go home. We are grateful we get to go home everyday. Only two more days of the chemo, then the Neulasta injection on the 6th day.

   
  

Today (7/25/16) Reba began the new chemo. She had vincristine followed by the irinotecan. So far she is tolerating it fine. We will be back tomorrow through Saturday. 

One day at a time.

  

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.