PICC line out!

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.



Results and Plan

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…

Chemo day 2-5!

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.

Chemo,day 1

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.

Sleeping during the infusion
In the bouncy house at Zoe’s party

New Plan

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.


Biopsy Results 

  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.