Today (5/26/16) we were back at LPCH for a blood transfusion. Reba’s hemoglobin dropped down to 7.1, so they decided to transfuse so we would be set for the long weekend. Transfusions typically take us 5-6 hours plus about 4 hours of total driving time, so another long day for us. Reba really perked up after getting her blood, and has a lot more color now too.

YaYa and Zoe came too which made for an extra fun day.

  
  

The last two days of chemo went well, but were long days. Saturday Reba had her Neulasta injection to help grow wbcs.

For the next two weeks Reba will have the home nurse come to draw labs twice a week. The next chemo week will be the first week of June.

  

  

  

    

Another chemo day complete.

Reba is a tough cookie. She had some nausea on our early morning drive, but the Zofran seems to be working.

Back at it tomorrow. Another birthday at the hospital, but at least this year we are outpatient!

   
    

 

Another one bites the dust!

We love the early appointments because we get home with some afternoon to spare to play outside.

Nana and Zoe came with us today which made our day more fun.

Back at it tomorrow.

 

  
   

Back at it for cycle 5.

We will be going all week for the same recipe: 1 hr of prehydration, 2 chemos (Cyclophosphimide and Topotecan) followed by 2 hrs of post-hydration.

 

  

 

Today 5/12/16 we were back at LPCH for the review of scans (from last week).

The tumor is the same size, and perhaps very slightly larger. It is measuring 5.1 x 3.7 x 5.8 cm whereas before (2 chemo cycles ago) it measured 4.7 x 3.4 x 5.4 cm.

The plan is to complete two more cycles of the same chemotherapy- 5 days of cyclo/topo and after the two cycles do more imaging. At that point they will also do surgery on the mass (will be her 3rd surgery..) to look at it closely and then reassess. We will start the next cycle Monday (5/16).

At home Reba is happy and unstoppable. She loves playing with her sister and has a healthy appetite. You would never know unless I told you… (Except for her bald head) 

 

 

 

Today 5/5/16 Reba had a MIBG scan and an MRI scan. She was under anesthesia for four hours. During this time the PICC team was also able to fix Reba’s PICC line. We are so glad they were able to stitch it back in while she was under anesthesia! Everything went smoothly and as planned.

We will meet with our oncology team next Thursday May 12th to discuss the scan results and plan.

 

  

 

Today 5/4/16 we were back at LPCH for the radioactive isotope injection in preparation for her MIBG scan tomorrow. She also has an MRI tomorrow as well. She had a bit of a reaction to the injection which scared us but it was very temporary.

After the injection she got a blood transfusion because her hemoglobin had dropped to 7.1, and since she has anesthesia tomorrow she needed more blood (7 is the minimum). 

Reba also had a dressing change today. Unfortunately during the change the stitches came out (that were holding the line in place) and so the nurse had to put a stat-lock on to secure the line. It is right where her arm bends so she is uncomfortable. We are hoping that tomorrow while she is under anesthesia the PICC team can stitch it back in. 

 

  

  

 

  

 

Today Reba went to LPCH for her Neulasta injection with her Dad and Papa Z! Mommy got to stay home  and wash her hair!

The Neulasta injection will promote the growth of new white blood cells. 

We are so lucky and blessed to have a wonderful supporting family.

  

Done! We are so glad this week has passed. Another chemo round done.

Next Thursday Reba has an MRI and MIBG scan which will tell us what the tumor is doing and our next step in terms of treatment.