Round 3..

Last week we were back up at PCMC for 3 days for round 3 of treatment. Chloe as usual did pretty well considering what her little body is going through. The first day we are there we spend most of the day getting fluids because the chemo meds that they give her (carboplatin, and etoposide) can cause damage to her liver, so they put fluids in her and moniter how much urine she is producing before they will start her treatments. After she has had enough wet diapers which is usually about 4 hours after then they start her chemo meds. She usually gets 3 different kinds ( carboplatin,etoposide and cyclophosphamide) and they run for 1 hour each, after those have ran for 3 hours, they give her fluids for the rest of the night and into the next day, which they give only the etoposide, and on the 3rd day the etoposide again. The first day we are there Chloe usually does pretty well, the biggest challenge of that first day is making sure she doesn't step on her I.V. and yank it out of her, so I spend the whole day holding her and keeping her entertained. That first night into day 2, I can definitely see that she is not her happy self. She sleeps ALOT, dry heaves and will usually not eat anything, day 3 she doesn't act sick as much, but you can tell she still isn't feeling well, and will sleep alot. This time we were up at the hospital my mom had Colin and Paige, so she decided to bring them up to see her. Chloe really needed them, she literally hopped up from her hospital crib and started grinning ear to ear and squealing when they walked in her room. It is AMAZING how much joy my kids bring to each other. They were able to hang out until we were discharged, and they came home with me. I was glad they were able to finally come up to the hospital to see what goes on when mommy and chloe are gone at the hospital. We have been home for almost a week and Chloe is doing pretty good. I was told by the nutritionists at PCMC that I need to fatten Chloe up, she is in the 2% for her weight, so I have been giving her lots of goodies, she is loving it! Her home health nurse came and drew labs yesterday and her blood counts all look good. I still have to give her neupogen shots every night, to help bring her white blood cells up which kinda stinks because they make Chloe sore, but for the most part she is being a trooper like always.

Round 2 of Chemo

This past Tuesday was Chloe's 2nd round of chemo. This time was different from the last time because instead of giving her a different chemo med each day for 3 days, they gave them all to her in 1 night, one after the next. Also her broviac site (her i.v.) has been really giving her a hard time. The dressing they use to keep it protected is SO harsh on her baby skin and has given her a nasty rash all over her chest, making it hard for her to relax. This time around it was definitely harder on her little body, but she refused to let it slow her down. I could tell she didn't feel well because she would hardly eat anything, and kept dry heaving. She just cuddled up to me and slept alot when we were at the hospital. We were able to leave the next afternoon though, because she was doing considerably well. She was definitely happy to see Colin and Paige when she got home, she forgot how crappy she felt as soon as she saw them. The past couple days she has been doing well, and is as happy as can be:)

Chloe's story...so far

I will start on how we realized something was wrong....
October 1st 2011..night time, Mike was holding Chloe when he noticed her pupils were different. Her right pupil was big and her left very tiny. We turned on and off the lights to see if they would change but only her right pupil would. We both knew something wasn't right so we took her to the urgent care, from there they told us to go straight to Primary Children's Medical, the urgent care doc told us she had meningitis. WHAT?! So we rushed her up to PCMC emergency room. After being admitted the doc said she did NOT have meningitis, she had zero symptoms of it. OK?! So now we were really confused. We had a CT scan done on her head to see if she bumped her head, but it came back normal. The doc asked us if she had ever had any other eye problems, and in fact she did. Through out the summer I had noticed her left eye droop at times, her pediatrician told me it was allergies. The ER doc said he thought the two symptoms were related. He called it "Horners Syndrome"..he was fairly certain, but referred us to see a neuro- opthomologist at the Moran Center. We went home that night feeling OK with his diagnosis because he said it was most likely something she was born with, and "Horner Syndrome" does not pose any health risks. A few days later we took her to the Moran Eye Center where we did a cocaine eye drop test( yes they put liquid cocaine in my 11 month's eye) and her left pupil did not dilate, her right one was HUGE, freaky huge. We also was pointed out that day that Chloe doesn't sweat on her left side, a perfect line down her head of sweat, and other side dry, another trait of Horner Syndrome...weird. The confirmed she indeed had Horners. They had determined she was not born with it, based off lots of pictures we brought in of her since birth. They believe she aquired it in May or June. So they referred us to PCMC for an MRI to see if there was nerve damage, or a tumor or still possibly nothing. They explained to us that when you suddenly acquire Horner syndrome it usually means there is an underlying problem in the body..Horners is kinda a "side affect" and not the actual problem. So a few days later we go in for the MRI,still fairly confident its nothing serious.... Boy were we wrong. The MRI detected a tumor in her chest on the left side (causing her Horner symptoms because the tumor is pressed on nerves in her neck). From that appt. through the rest of October our days were filled with every scan and test imaginable. We met with an oncologist at PCMC who told us she believed Chloe has Neuroblastoma, a type of cancer that affects the nerves. On October 18th, we went in for her biopsy and bone marrow aspiration,they then confirmed the Neuroblastoma and put a broviac line( an iv placed surgically to give her meds and draw labs). Further tests have confirmed that she is stage 4 because it has spread to parts of her bones. Her doctors have told us that even though it is stage 4, they class her in intermediate risk group due to her being under 1 year old at diagnosis and she doesn't carry a certain gene found in this cancer. They tell us this is VERY good factors and she has a great chance of recovery. Chloe started her first round of chemo on November 2, the day after her first birthday.Not our ideal way of celebrating but if it means more birthdays for her than that's what we have to do. Chloe has handled everything from her scans, surgery and chemo like a champ. She is simply AMAZING. I mean if you've seen her in person, she is the most dainty little girl, but she has proven herself to be a fighter.We have about 6 months of chemo and then they will rescan her to see if they can remove her tumor( they need to shrink it because it is so close to her spine). We have a tough road ahead, but she is worth the fight. Thanks so much for the support:)