...continued from Raylee's Story

Late this morning oncology called us and explained they were pushing Raylee's Chemo back a day in order to ensure the testing she needs prior to Chemo treatment are completed. This means......we did not begin Chemo today. This was a little frustrating because we had our bags packed and were ready to go, however, it was also a blessing because the feeling of starting this is not pleasant....plus it is my mom's birthday today; not exactly something I want to remember on my mom's birthday. Delaying another day may seem like the beginning is dragging on and on, but it didn't. We decided to use this time to have a little fun before we have to keep Raylee away from germ infested public places. We went to lunch and then to a local aquarium where we were astounded by sea horses and jelly fish. All I can say is Heavenly Father is a great master of creativity in all living things! After a while we were not able to observe all the creatures at the aquarium because Raylee was in pain and we went home. At home we watched Toy Story 2 about 5 times---it is worth watching over-and-over to hear her sing along with the song 'You Have A Friend In Me.'

Raylee's treatment will be part of a clinical study. She will have 2 rounds of treatment and then a CT Scan to evaluate if the tumor has shrunk 50%. If so, they will remove the tumor. If not, she will have 2 more rounds of treatment then another CT Scan. In regular chemotherapy for Stage 3 neuroblastoma, children have 4 rounds of chemo prior to the CT Scan to determine if the tumor has shrunk. The clinical study is trying to prove children do not need extensive chemotherapy. The drugs used in regular treatment and the clinical study are the same. The treatment will take 3 days with 4 different drugs. All the drugs are given on the 1st day. On the second day one of the drugs is given again, and on the 3rd day another one of the drugs is given again. Remember when I said Chemotherapy has side effects???? Well they are countless....there is no way I can list them all. Some of the major ones are nausea and vomiting (they can give her additional medicines to help alleviate this), fewer red and white blood cells, hair loss (we took our girls to get their pictures last Saturday before Raylee loses her hair :(  ), poor immune system, hearling loss, and damage to the heart....for these reasons she will have a lot of labs done on her blood, hearing tests, and echocardiographs. Once she is home we will give her medicines in shots to boost her white blood count to strengthen her immune system. Right now, Raylee has a central line in her chest and we flush it with saline and Heparin twice a day. Heparin is a medicine which prevents the incision where the line goes through the chest from clotting.

Raylee knows she is sick...she keeps asking to go to the doctor. Today she found all the Bandaids and put about 15 of them on her arms and legs; she said she was all better. If only a Bandaid was all it truly took to cure her and all the children who are undergoing an illness.