First Infusion and Jonas Brothers Charity Softball

"Road Dogs" Jonas Brothers Charity Softball

Olivia went for her first pamidronate infusion on Thursday, August 12th. Pamidronate (Aredia) is a 4 hour biphosphonate IV treatment that is given in the hospital. Since there wasn't much room in the Connecticut Children's Medical Center Hemo/Onc clinic for Livvy to lay comfortably, with me, and her big sister during treatment, they sent us up to the 8th floor and gave us a private room for the day, although there is an infusion center on that floor as well. (That's the same place we spent two weeks in July). They brought her lunch (she loves their chicken tenders) and we tried to play games. She even went on her laptop for a little way to play a game and complain about the treatment on Facebook lol.

Jonas Brother's Road Dogs Tour Bus

Brighter Hope Campaign & The Jonas Brothers
The Children's Hospital has a Brighter Hope Campaign, with plans to expand the hemo/onc clinic to include private infusion rooms and 8000 feet of space (much needed). The day after her treatment, we went to New Britain to see THE JONAS BROTHERS play a charity softball game to help raise funds for the new center.

 While we were getting the infusion, the nurse offered us tickets to see the Jonas Brothers play softball at the Rock Cats Stadium in New Britain. We got 6 tickets and took her most supportive friend along with us. Livvy was tired and had a little temp when she woke up. She took her Tylenol w/codiene and we picked up her friend and headed out. At first she was in good spirits. By the time the game started she was pretty worn out and hot. After we got the chance to see the Jonas Brothers in person, Livvy felt a little nauseous so we decided to leave before the game actually started. When we reached our driveway she was really upset and said, pretty much that everything hurt. Took off the brace, got her in bed and she slept most of the day.

Olivia, her awesome & supportive friend, and little sister

Last night was pretty bad. Everything hurts, from her toes, fingers, knees to her head. This morning, same thing and a temp of 101.1. Apparently this is 'normal' for up to 48 hours following the first treatment. She woke up, had tylenol and went back to sleep saying she didn't even want to get out of bed. She's sleeping so I decided to update the blog and post the pictures from yesterday.

"Road Dogs" Joe Jonas stretching

About Pamidronate Infusion: 
"Cancer cells that spread to the bone can secrete substances that can cause cells found in the bone called osteoclasts to dissolve or "eat away" a portion of the bone.  These tumors or lesions weaken the bone and can lead to complications.  Some of the complications resulting from this bone breakdown are bone pain, fractures and less commonly, hypercalcemia (increased levels of calcium in the blood).
Aredia is a bisphosphonate.  Bisphosphonate medications are used to slow down the osteoclast's effects on the bone.  In doing this it can be useful in slowing down or preventing the complications (bone pain, fractures, or high calcium levels) of the bone breakdown."

Progress (sort of)

check out the decorated "Minerva" brace

Olivia followed up with hemo/onc. last Thursday, the plan was to get a a brain MRI, x-rays of her jaw, a urine sample and some additional lab work to once again 'rule out' all the 'bad stuff' and any autoimmune disorders. The jaw x-ray was done because she complained of sensitivity when a nurse took her temp by ear.

Today we went back and the Onc said the x-ray "appeared" to show another mass on her jaw and 'possibly a fracture'. We then talked (cried some too) about treatment, which will include something like Fosamax, prednisone and vinblastine.

Impatiently waiting at the clinic

She was sent down for a CT Scan, which she did like a trooper, without SEDATION (yay!) We went back and waited in the clinic for the results, while the Onc Dr. prepared a form to bring to DMV for a temp-handicapped parking pass (long walking takes a toll) and a wheel chair, in case we want to actually go somewhere FUN.


The CT Scan was CLEAR and showed no lesions- just a lonely little tooth that hasn't erupted yet! So back to the drawing board.

No definitive diagnoses other than "non langerhans histiocytosis," and still trying to rule out the uglier things. They delay is because the sample taken during biopsy were weird, two showed normal cells, the other can't be pinpointed.  Still waiting for more guidance from John Hopkins & North Shore's opinion.

We Love Becky from Childlife-she rocks!

In the meantime, the Onc suggests starting fosamax to rebuild the bone...the steroids were on hold because of the brace/ fracture. Once she's out of the brace we can start steroids, which is in about another week or so. Maybe vinblastine...he gave me lots of homework to do, printouts off all the meds/side effects, etc. We also want to be SURE we treat whatever this is the right way, without "masking" anything else. Whew. So we're home now. As a reward for not freaking out during the CT scan and all her bravery today (not one tear during blood work!) we're going out for dinner.

(By the way, this type of back brace is called a Minerva Brace.)