Carly is Home!!

It's been a busy week. Tuesday we had an appointment at the Mass General Proton Beam Center. We visited MGH to have a foam mold made of Carly from her waist down. The mold will be used during each procedure to help keep her immobilized and to help align the beams. To make the mold expandable foam was poured into a large plastic bag and then we laid Carly on top of it until it cured.

The actual treatment area looks like a large drum. The inside diameter of the drum looked about two stories high. Carly will lie on a table that will be moved into the drum and then the drum rotates into position. The outside diameter of the drum is three stories high. A nurse said the machine alone cost over $80,000 when it was installed and today it would cost over $100,000.

Wednesday we arrived at Dana Farber. Carly's doctor, Dr. Reynolds, was on vacation so we met with Carly's primary nurse Krista and two nurse practitioners. They started her on fluids, pre-meds and then her chemo medications. After she completed her medications we walked across the street to Children's Hospital.

Later that night Carly had a rough time and ended up getting sick this morning. She perked up later in the morning and played with her roommate Amber. Amber is also four years old and has been diagnosed with Leukemia. After playing with Amber we went for a walk. Later Carly started to get irritable and had a few episodes. The irritability is caused by one of her pre-meds. She was pushing all our buttons today. The only persons she was nice too was her nurses, the charge nurse Brittney, and what's turning into one of her most favorite people, Annette. Annette is a nurse practitioner and a super lady. Actually they have all been great, Carly has just taken a liking to Annette. Her primary nurse and best buddy while on 7 west is Vicky, but she was on vacation in Greece.

Carly received her last chemo medications around 1:30 this afternoon and then about two hours later received a blood transfusion. This cycle was the same as the first and as some of you know she had a lot of problems with the first cycle, mainly dehydration and constipation. We expressed our concerns to Annette and she recommended that the IV needle be left in Carly's port over the long weekend. If she won't take in fluids on her own the visiting nurse will hook her up to some fluids.

The ride home wasn't much better. Carly started to complain about her stomach and Henni was carsick. I had to pull over so the two could get some air. We're very happy to be home and to see Kelcie again. She has been such a trooper through all of this and an awesome big sister. Now we are just praying that the next couple of weeks will be uneventful.

Carly has had a great week and an even better weekend. Roy, Kelcie. Carly and I spent Sunday at the Dana Farber's Jimmy Fund Picnic. It was GREAT!! The girls had a ball and there was so much for them to do. They had kiddie rides, face painting, swimming, games, a petting zoo and much much more.

It was great to see all the kids and their families having fun. It was a perfect day to be outside. We saw some of Carly's nurses and other familiar faces.
Tuesday we're off to Mass General Hosp. to have Carly fitted for the cast she will need for the radiation. Mimi and Kelcie will be making the trip with us and it will be Kelcie's first ride on a train. We'll be getting a tour of the facility and finding more about what to expect from the treatments. On Wednesday we're back to the Jimmy Fund to start round #3. Roy and I are not looking forward to this round at all because of how awful she did the first time she had these Chemo drugs. But we'll think positive and pray a lot that she handles it ok. Hopefully this will only be a three day stay, it all depends on how our little Carly cake handles the drugs.

This week didn't get off to such a great start for Carly. She was scheduled to have blood drawn from her "port" on Monday by the visiting nurse who administer her GCSF shot. First, her usual nurse was on vacation so we were expecting someone completely new. Carly was very uneasy having to have a shot, blood drawn and dealing with a new person. That morning two nurses came, one Carly met before, but the other nurse she had never seen. Needless to say she was very nervous.

Roy decided he'd stay to watch them and go to work late. They gave her the GCSF shot first and then got ready to draw the blood from her port. The whole time the nurses were talking back and forth amongst themselves about the procedure they would be doing and this made everyone, Carly, Roy and I anxious. The first poke went in and nothing happended... no blood! The nurse was moving the "butterfly" (needle) all over and still nothing. She took it out and wanted to try again. We begrudgingly let her even though Carly was crying! She tried again... still nothing. She took it out and let the other nurse try. We let her try and Roy swears she didn't even get the "butterfly" in the port. By this time Carly is so upset she's gagging and on the verge of vomiting. Roy immeadiately got on the phone to the Jimmy Fund nurses and told them that the VNA nurses were unskilled in the practice of drawing blood from a child's port. They told us to bring her in because there might be a problem with her port. Roy and I were so mad at those nurses for putting Carly through that.

We jumped in the car and headed for Boston. When we arrived Carly and Roy went with a nurse, sat down and two minutes later the nurse was done with no problems and Carly didn't even cry. The nurse at the Jimmy Fund said they would contact the VNA. Carly thankfully doesn't have to have any more GCSF shots until next time. So for now on I'll be taking her into the Jimmy Fund for her blood work.

This weekend is the Jimmy Fund Picnic and we're all looking forward to it. Then on the 28th were back in for round #3, a three day stay.

Its nice to see all the messages Carly's receiving on her new web page. We feel we're helping family and friends by reporting Carly's progress and, in return, we are helped by all the warm and loving messages.

Here it is! Carly's very own Web Page and Roy really did a great job! Our thanks to Ron Pacheco (Touch of Hope) for this wonderful web site. Now we have a special place were we can keep friends & family informed about Carly's journey toward wellness.

Carly has had a pretty good week overall. She's had her moments with her tummy, but, for the most part, she's eating, drinking, playing and most importantly "pooping". We've had a lot of visitors and have been swimming a lot in Jammie & Poppa's pool. All things Carly loves to do. We're enjoying every minute of her being home and feeling good! Hopefully the next week and a half will be as good.

I look forward to reading the guest book in the future and invite everyone to visit and sign it. Once again, thanks to Ron Pacheco for his help in creating this wonderful web page.

Henni