Carly’s first week of radiation is now complete and for the most part she did well during the treatments. She moved once during prep and the radiologists had to take more x-rays to position her in relation to the beam.

Overall this has been Carly’s worst week since her first treatment. She has been very sick and her tummy hurt her quite a bit. She is now taking a Tagamet daily on top of her other medications.

We had a Halloween party Sunday that we were considering canceling, but we felt it was best to have it in hopes that it would perk Carly up a bit. For the most part someone was holding Carly during the party. By the end of the day she was feeling a little better.

The rest of the week Carly has had her up’s and down’s. By Thursday she required a red blood cell transfusion and tomorrow after radiation she is scheduled to have a platelet transfusion. She is neutropenic so while in public she has to wear a mask. We are praying that by Monday she will be recovering.

Carly is home after a rough round of chemo. Wednesday she started her chemo at Dana Farber and then we made our way to Children’s Hospital around 5:30 pm. Everything was going fine until late that night when she woke up due to leg pain, nausea, and vomiting. She was given morphine and an antiemetic. Around 1:30 am Thursday morning her condition got worse and was given more morphine. Later that morning nurses on 7 west commented that they have never seen Carly like this before.

Carly received her last chemo meds around 11:00 am and was scheduled for her first radiation treatment Thursday afternoon at MGH, but they were having technical difficulties and had to cancel. I honestly have to say that this was the worst reaction Carly has had since the first treatment. Unfortunately there is the possibility the side affects from chemotherapy could get worse with radiation.

Her first night at home went a little better. This morning she has been complaining about her tummy and headaches. The headaches are a symptom of anemia. We are just about to make our way back to Boston to start her radiation this afternoon. I will try and post an update this weekend to let you know how her first treatment went.

It is with great sadness that we have to say goodbye to Dr. Jason Reynolds, Carly’s oncologist. He is leaving Dana Farber in two weeks to go into private practice that will allow him more time to spend with his family. Henni and I would like to thank Jason for the care and attention that he has given Carly. We couldn’t have expected more. Jason, we wish you and your family the best and we will keep you informed about Carly’s progress.

Carly had a good week. She stopped her GCSF shots and her blood counts are starting to climb. Her red count was low during her last blood test but should be ok now. I have noticed that the red blood count takes longer to decrease and then recover.

Carly was scheduled to start her radiation treatments this week, but things didn’t work out as intended and now treatment has been delayed. The first radiation treatment is supposed to start during a chemo cycle, and since the radiation did not start her chemo treatment was postponed one week. If the radiation does not start next week another round of chemo will be added on at the end.

Monday Carly had a new immobilization device made for her radiation treatment. This cradle will immobilize her in a facedown position. She did well during the molding process and at one point assisted the doctor in making it. We spent Wednesday morning at Mass General making final adjustments to the cradle and to have a CT Scan done. She stayed motionless during this procedure so the doctor figures she will not require anesthesia during treatment. This is very good news

Even without the chemo it was still a busy week. Sunday we went to King Richard’s Faire with Grandpa and Vavo. We saw knights jousting, fire eaters, pirates, barbarians, and a princess or two. Last night we traveled into Boston to see the circus. I believe this was the first time we were in Boston without stepping foot in a hospital. The girls really had a good time. Now we are just waiting to find out if Carly starts radiation next week.

Today was a long day in Boston. We left the house around 6:30 this morning and arrived at Children's Hospital at 7:40. First on the today's schedule was to go up to 7 west to have her port accessed. Carly was not very cooperative for Chris so he recruited Vickey and Pheadra. After two attempts she was all set to go to the imaging department.

Carly was given a sedative at 9:30. From the time the nurse started administering the sedative until she fell asleep was about 10 minutes. During this time she became very restless. At one point she bumped her head on the railing. She cried a little then fell asleep. While Carly was having the MRI, Henni and I walked over to Dana Farber to talk with Krista to let her know we were in and would be over later to have blood drawn and to have her port de-accessed.

An hour later we headed back and shortly after we arrived Carly was brought into recovery. One of the sedatives she was given can cause "rage" which we got to experience firsthand. Carly had to be restrained with a sheet for about twenty minutes until she fell back asleep. When she got to this point she could not be consoled or reasoned with. We just had to let her ride it out. This was not fun at all.

Carly was scheduled for an appointment with a radiologist oncologist at MGH, but because she was having such a hard time recovering we had to call and reschedule. Around 3:30 pm she was calm enough for us to leave. This was one exceptionally long day and we are glad to be home. Aside from other undesirable side affects like irritability Carly is doing well. Monday we have to go back in to MGH and then Wednesday for round 5.

Sunday we are going to King Richards Fair with Grandpa and Va Vo. I think Kelcie and Carly will have a good time, especially when they see a princess.

This past weekend Carly’s preschool had its annual yard/bake sale. This year, however, they donated the proceeds from the baked goods table to Carly’s Fund. The whole family went over on Saturday to check it out and it was outstanding!! They had a big banner up that said “We Love You Carly”, along with the article from the Sun Chronicle on poster board for everyone to see. Carly didn’t attend school on Friday because she wasn’t feeling very good so her teachers were very happy to see her at the sale.

For the most part Carly’s been feeling so-so, her tummy really bothers her a lot. She went to school on Monday but didn’t feel up to going today. This Friday we will be heading into Children’s Hospital for an MRI test on Carly’s back. From there we will head over to Mass General Hospital to meet with Dr. Norbert Liebsch, a chondrosarcoma proton beam radiation oncologist and a leader in the field. Hopefully we will be able to find out exactly when the radiation will begin and if Carly will have to be sedated or not.

We will keep you posted and appreciate all kind thoughts and, of course, your prayers. Henni