Family - We Love Nick

This week has been a blessing to us. We have really enjoyed the old Nick again and seeing him smiling and playing with his brothers. He is feeling much better, but we understand we still have a long way to go. He received his shot on Tuesday and nurse checked his strength. His legs are very weak and the doctors are planning on lowering his next dose of the Vincristine and doxorubicin. We are going to try and taper him off the steroids, which is causing most of the pain in his legs. Many of you might wonder, what the steroids do. Steroids are very powerful in treating leukemia. They work with the Vincristine (chemo) to attack the red blood cells and marrow. Unfortunately, one of the side effects is pain and a lot of it in the legs. We are hoping that tapering him off might alleviate some of the pain and make him feel a little more comfortable.

Onto the goods news. We will be celebrating Nick's Birthday this weekend, as a family. Since we can not have a party for him at all the tumble places out there (too risky for germs and he is too weak to play), we have decided to take him to a hotel for the night. It will have an indoor pool for all of us to play in and just enjoy the night away. Greg is working on the place as I am writing. We started a tradition in our family and if it's your birthday then we (the rest of us) make breakfast in bed for you. Nick is looking forward to having breakfast in bed at the hotel. (And, mommy is excited she does not have to cook). The weather should be sunny and nice on Saturday, so we hope to walk around the city and eat some yummy food.

Good Week for Nick

Hi all - this is Aunt Amy. Nick is having a much better week, than last week. I think the blood transfusion has really helped him feel better and the fact that this is a no chemo week. Nick visited yesterday with Joey and spent all morning playing around the house. They really enjoyed themselves, and Nick got out of his house for the day.

At the end of April, the Shannon's and extended family will be attending the Tomorrow Fund Stroll to help raise money for the fund, which provides financial and emotional support to children with cancer and thier families who are treated at Hasbro Hospital. We are ordering T-shirts and looking forward to all spending the day together. Anyone interested in learning more about the tomorrow fund, you can go to www.tomorrowfund.org. Nick has reached the half-way stage for the shots - yippie! hopefully the weather continues to get nicer and Nick can enjoy some more time out of the house. Aunt Amy

The Shannon Family - We're Home

Yes, we were able to come today. Greg and Nick arrived around 5pm and Nick is very happy to be home. Tom and Nick started laughing together, they really missed each other. Now that we are all educated, his ANC was 357 before he left the hospital. The fever has been gone for over 48 hours and Nick has even walked a little. The good news is that he is back to himself again and making jokes and most of all SMILING. We are going to enjoy the weekend and probably take him to CBS Scene Restaurant.... which is now his favorite place.

A Trip to the Hospital

Hi everyone, this is Aunt Christa. Just a quick update and a little information. Nick and Karen went to the hospital today because Nick had a fever and was Neutropenic. From reading other blogs about kids going through the same thing, I found a little information to pass on about the ANC count and what it means to be neutropenic. What is ANC? It stands for Absolute Neutrophil Count. It is not a White Blood Cell count, but is the concentration of neutrophils in the while blood cell count. ANC equals the Total WBC count multiplied by the total percentage of neutrophils (segs plus bands). So you can have a high White Blood Cell count, but a low ANC, it's rare but it is possible. Nick's Chemotherapy is immuno-suppressive, The 6MP and Methotrexate lower the immune system by suppressing the bone marrow from making things such as White Blood Cells. When any of us gets a virus or bacterial infection, our ANC gets lower, but if you are on Chemo it can drop to dangerous levels, aka Neutropenia. That is what can happen to Nick. The BIG worry in all of this is if he were to get something like Strep or something bacterial, and if his anc were lower than 500, you can have real issues, including a risk of death. That's why he needs to be in a ER with a fever, when he is neutropenic, so they can start IV anti-biotics immediately. ANC fluctuates a lot because they are constantly trying to control it's range with the chemo, while dealing with external forces such as virus. ANC is the main diagnostic value for Lymphomas and many types of Leukemia.
Keep your prayers going for Nick. He had a blood transfusion and is feeling a lot better this evening. He even managed to get on toontown and play with cousin Joey for a while.
Aunt Christa

The Shannon Family - Counts are low today

Hi All,
As Amy posted previously, we took the family into Boston for the St. Patrick's Day Parade. Nick had been talking about it all week. He was looking forward to it, but was also very tired and in pain that day. Nick did tell me today, that he like the storm troopers and the horses smelled really bad. He plugged his nose while telling me the had a good time. He looked very cute bundled up and sunglasses on, when it was 60 degrees out. As long as he was warm... he does not complain.
Today at clinic, Nick was great. He did not cry for his port to be accessed or the shot in the leg. Yep, he took the shot like a big kid. That was the good news of the day. The bad news is that his counts are real low. We are borderline for a blood transfusion and on fever watch. There are a couple of reasons for the low counts: 1. He just had a high dose of chemo last week and it drops his counts, 2. His body could be fighting off a virus or 3. All of the above. We will keep a close eye on him this week and hopefully he can rebound quickly and no hospital visits.

White Blood Cell (WBC): 1.1 (Normal 5.0-15.0)
Red Blood Cell (RBC): 8.6 (Normal 10.5-13.5)
Platelets (PLTS): 62 (Normal 150-400)
APC Number: 143 -- Not good

Nick has been in a lot of pain this weekend. We expected the pain 5 days after the chemo and steroids, but it never gets easier watching your child dealing with it. He will take the pain medicine after a while. The doctor has a little concern about his bone density and the effect of the drugs. He can barely walk today because of the soreness and pain. They are thinking of doing an MRI on his legs in the upcoming weeks to make sure everything is okay. More to come. We are going home now...... another shot down.

The Love Family - We all headed into papa's for the Annual South boston St. patrick's Day parade. Everyone had a great time. I never know if the adults or kids have more fun, but we all get to celebrate togther. Nick made it to the parade and seemed to enjoy watching it. Here is a picture of the Star Wars characters that march in the parade. The kids had fun collecting the 'beads' and candy that was tossed along the parade.

Tomorrow Nick will be going to clinic for another shot and blood counts. Nick is about half way through this phase of treatment which is getting very difficult. Nick is feeling the side affects of the shots and chemo but he is a trooper!!! Karen will update everyone this week on clinic. We thank everyone again for the meals and support they have provided to the Shannon's. Aunt Amy

The Shannon Family - Clinic Visit

Hi All,
Time for another update. Nick's visit at clinic yesterday went very well. His counts were good enough to receive another round of chemo. He was scheduled to receive the chemo this Thursday but we backed it up a couple of days, which is good news to us, we keep moving forward. (Dose #5, out of 10). Nick was complaining of leg pain yesterday and there was some concern of a blood clot, which is very serious. After taking a look, the nurse confirmed it was just soreness and Nick was able to get his shot. (shot #14, out of 30). Greg said he was great at clinic... getting into a routine, which is comforting and scary at the same time. Nick is so wise in so many ways... things he should not know, but does. He gets excited every time I take his temperature (which is often, since I am constantly worried) and it reads under 100. He knows he is taking his 'cranky' medicine now and is concerned if he will feel leg pain again from the chemo. The good news this week.... he gets to go to daycare tomorrow and see his friends and then off to Michael's for a play date after. He will be one tired and very HAPPY boy by days end. His counts are okay:

White Blood Cell (WBC): 2.9 (Normal 5.0-15.0)
Red Blood Cell (RBC): 8.7 (Normal 10.5-13.5)
Platelets (PLTS): 201 (Normal 150-400)
APC Number: 1,300 (above 1,000 is good)

As parents, Greg and I have seen/met many people through clinic and on the 5th floor who need more help than us. There have been many flyer's posted at Hasbro for bone marrow drives. The kids who needs them range in age from 4months to 21 years old. This is there last chance at life. If anyone is interested in becoming a bone marrow donor, you can log into www.marrow.org and join the registry. The drives at the Hospital are free and I can fill you in when I have dates. I believe the online registry is a $50 charge, although there are some months it is free. I am sure you are wondering if Nick will need a transplant? At this point, no. We continue to prayer that his body accepts the chemo and does the 'work' necessary to cure him of cancer. Let the 'steroids' begin. (It is actually humorous to us now)