Thursday, September 24, 2009
Since I had the camera the other day from the State House, I thought it would be neat to take pictures of Nick getting his port accessed. We have come a long way since the start of his treatment. He used to cry and scream and really did not like the needle. He is now much more comfortable getting his port accessed and even helping the nurse out. Here are steps he takes:
1. Numbing cream was placed on his port prior to accessing. When we get to clinic Nick will take the bandage w/cream off.
2. The nurse cleans the area with something we call the 'stinky angel'. It smells bad, but keeps the skin sterile
3. You can not see this picture too well, but the nurse actually has a needle w/IV tube attached and she sticks the needle through his skin and into the port.
4. The nurse then attaches a syringe like needle and tries to draw blood. (Sometimes the port can move and the blood does not come out, that's for another day)
5. She fills up a couple of syringes
6. Nick helps her move the blood from the syringe to the test tubes. He really likes this job
7. There is his blood to be sent off to the lab.
He keeps the needle in to wait for the IV chemo to come. Once that comes, they send it through the port and then de-access the port. This is the only way he likes his blood drawn. He is not used to a needle in the arm.
Nick has been doing great in school and we are happy he is enjoying it and making new friends.
I have some wonderful news that I wanted to share: A family we have met at clinic, The Whelan Family, have just finished treatment for Finn. Finn was diagnosed with ALL T-Cell and followed the same protocol Nick is currently on. They just received the great news a couple of weeks ago and his last day (of all those toxic drugs) is today. Way to Go Finn, we are proud of you and your family can hopefully fall back into some 'normalcy' and more play time at home. The Whelan family have really helped us through our clinic visits and they have seen Nick at his worst and would always re-assure us that it gets better. They gave us advice and were a shoulder to lean on. We thank you Whelan Family. Take Care Karen
Tuesday, September 22, 2009
Today was a big day for Nick and a very humbling experience for all of us. The boys woke up eager this morning to wear their new clothes, a tie, shirt and dress pants. They looked so handsome and of course tears came to my eyes. (That is pretty much how the day went, I think my eyes were never dry). We then headed to the RI State House for the big press conference. I was amazed to see how many kids showed up, I guess 'skipping' school today is okay. The Governor gave a speech and then the Child Life Speciallist started with announcing the kids who have lost their life, 2009 Ambassadors and then Lifetime Ambassadors. They brought the kids out of the room and had them enter through a side door when their name was called. Nick got up and left on his own and waited in line w/o his parents. Colby would check on him during the announcements of the kids and then come back and sit with us. When they announced Nick's name he walked (I really should say strutted) up to the Governor to shake hands and have his picture taken. We did not originally tell Nick he was going to receive a medal, so he was very excited when he received the medal and a certificate. After the ceremony, we headed to the state stairs for a group picture. Nick and Colby sat on the first step and the Governor sat right next to nick. We were able to visit with our Clinic friends and even see the ones who are now in remission. This day was for RI to honor The Tomorrow Fund Clinic and all they have done (financially and emotionally) for patients at the clinic.
After the morning, we headed over to clinic. I think today was our quickest visit EVER. We were at clinic less than an hour, that never happens and Nurse Paula was great. She even let me take pictures of Nick having his port accessed. I will post those pics on the next blog. We missed Tom very much today but we know he much more fun at Nancy's house than us trying to keep him quiet during the ceremony. We will have much to tell him as he gets older and hopefully this blog site will help him understand as well. Karen