Great Weekend for All

Hi,
Greg and I had our weekend away. We had a wonderful time to relax and de-stress some. We met some wonderful families and know we are working together in every effort to help Nick. The 80's Prom dance on Sat. night was a lot fun. Many of the councilors & parents dressed up in old prom dresses and bow ties made of colorful tape. Without trying to get too deep into the weekend, Greg & I realized how fortunate we are to have each other and how strong our relationship has grown from this experience. As Father Dom stated during his presentation: 'Happy Parents, make Happy Kids', plain and simple.
Greg took Nick to clinic on Monday. His counts were great:
WBC: 5.4
RBC: 10.4
Plts: 260
APC: 3,500
They decided to lower his Methotrexate does this round and then try to bump it back up the next round. The reason for this is because he was sick two weeks ago and they want to make sure the chemo will not drop his counts drastically again. He is back on steroids this week and sometimes I think he is actually playing us. He moaned about going to school yesterday and then the teacher emailed to let us know that he felt tired and had to lay down by himself. He was scheduled to go to daycare, via the van pickup, but I ended up going to get him and bring him home. He came home very happy, played with Grimace and then took a nap. Today, he took the van to Prospect and then ran into Debbie, who was picking up Maggie. He asked Debbie if he could go home with her and wait for Michael to get out of school. Of course, with his sad face, she could not resist. He is at Michael's today playing. He will should sleep good tonight. I think it is better he is on steroids this week before we get into the Thanksgiving Holiday weekend. Take Care, Karen

Hello,
My friend Debbie sent this picture of Nick & Michael over to me. We took the boys to St. Rocco's in Franklin for the Italian Fair back in the summer. The boys had a great time. I can remember Nick getting really upset because he was not tall enough to the ride the big rides. I went on one of the big rides with Michael and Nick cried the whole time. It just reminds me how tough he is. He does not want anything to get in his way.
The Hole In the Wall Group sent us an invitation for a 'Great Escape Weekend' at the Heritage Hotel in CT, couples only. We signed up for this weekend awhile back but were never really convinced we would actually be going. We can not commit to anything in the long term, we plan our schedule week to week now. Well, here it is and it is time for us to get ready to go. This will be the first time we have left all 3 of our children in over 2 years. We are so excited to go, yet apprehensive too. The coordinator asked us to bring a picture of our children and a picture of our family. I immediately pulled out the picture of the 3 boys that was taken professionally after Christmas of last year. At the time, my plan was to have Tom's picture taken only, since I missed so much of him in 6 months. Nick was not suppose to leave the house because his counts were real low but he was so excited and wanted his picture taken. We were scared the whole time and tried to keep Nick away from anyone walking by the photo area. I can look back now and say I am so happy we captured this moment for Nick. He had lost just about all of his hair, he looks pale, but he is smiling. Greg & I laugh at each other because we are the worst people when it comes to taking pictures. We are lucky to remember to bring our camera and then pull it out of the bag. We will be bringing this picture with us and a picture of Greg & I at my High School prom, yes that is right, they are having a 'Prom Dinner Dance' on Sat. night.
We informed Nick and Colby of our big weekend and Colby said it was okay. Nick said we could go for 2 nights only and we had to promise we would be home by Sunday. I am sure I will be crying leaving the house and part of the time away from the kids. We know this good for Greg & I, but also hard to be away. There are many parents who are not able to go these events because their children are in the hospital battling cancer or really sick. We are so fortunate to have Nick back in good health mode and this opportunity for us. I believe the coordinator will probably have seminars and presentations and we are hoping to meet some parents who are going our same journey. I think most of all we would like to relax. Between us both working, Nick going to clinic, the boys in sports and Tom a very active child, there is not a lot of time to rest.
Nick will start another round of chemo & steroids on Monday. He was taken off of the 6mp pill last week when we went into the Hospital, so we have had a little break from everything. Unfortunately Nick is so conditioned about his medicine that he asked us for his pill last night before he went to bed. We explained that he gets a break for a week and he said to us: "did you ask the doctor? Is that okay?". He is a fighter and he believes his medicine will help cure him. We continue to pray it will.
Thank you to everyone who is helping out this weekend, a big family crew is coming together, we appreciate it. Take Care, Karen

Back To Clinic

Hi All,
Nick and I headed to clinic today. He first went to school and was very excited to get back on the bus. Clinic went very well. The nurse (Angie) was surprised to see his red spot from where the ER first tried to access his port. It was pretty high and not where the spot usually is. We still battle with the concept that the ER does not exactly know how to access the port, but since Nick is getting better at it we try our best. In other words, mom did not ask them to call the 5th floor for a nurse to come and do it the right way.
At clinic, we thought his counts would not 'make it' for chemo today, but to our surprise (not Nick's) he made it. Today was Methotraxate only. We will start another round next week. His counts re-bounded great.
WBC:4.5
RBC: 10.4
Plts: 478 (on the high side)
APC: 2,600 (we thought this number would a lot lower)

He still has a cough, but it is loose and so far they are not worried about it. He ended up taking a 3 hour nap today, so tonight will probably be a late night. It is definitely hard to get him back into a good sleeping pattern after leaving the hospital. You can never get a good night sleep there. The nurses check on you all the time, which is good, but does wake us up. We should have a good week this week, and maybe mom and dad can go away. We have had this weekend planned for awhile and will give more details as we approach the weekend.

PS. I would like to say thank you to Debbie and Mike for having Colby & Nick over on Sunday. Nick was going a little stir crazy being cooped up in the house all day and I decided to give Deb a call, planning on having Michael over. She ended up taking both boys, giving Greg & I some time to catch up on house work. This weekend was also originally planned for Tom and I to go to Maine to visit my dear friend Frannie in Portland. She has a little boy, Dawson, who is the same age as Tom and we were planning a shopping adventure and so good winter ale. I ended up canceling with Nick being the hospital. While I was really looking forward to spending some quality time with Tom, I realized we could do that at home to. Greg & I took advantage of giving Tom some 1 on 1 time while the boys were gone. He has such a great personality and loves to laugh a lot, which we all need at times. I'll catch up with you soon Frannie. Take Care. Karen

Test was Negative

Hi,
Just a quick update to let everyone know that Nick's H1N1 test was negative. They did find he had 2 viruses, thus leading to the fever. The new swab test can test for everything. We are trying to keep all the boys busy while at home. Nick understands he can not go anywhere and is okay with it.

Also, Tom and Colby finally received their first dose of the H1N1 shot. Our doctor's office called last week and said they would hold a dose for each child. I took them both yesterday. Colby was so nervous and kept saying he would not get the shot. He cried right up until they gave it to him and then he realized it did not even hurt. After everything Nick has gone through, I think he was scared and worried it would really hurt. I have to say, it was easy for me to deal with. You see so much more that goes on with Nick, that this is just a walk in the park to take care of. Tomorrow we will head to clinic after school. Take care. Karen

Day #2 in the Hospital

Hi All,
2pm Update:
Nick was released from the hospital. His ANC is up to 280 today. He has no fever and the doctor really believes he probably caught a cold and has been fighting it, on top of the steroids and chemo doses, it can knock him down. The doctors also feel it is better to be home these days than in the hospital. So we are going to take it easy this weekend and enjoy lots of family time. Nick will be back at clinic on Monday and hopefully his counts have re-bounded. Take care. Karen

10am Update:
We do not have too much news. Greg spent the night with Nick and he said everything went okay. They had to wake Nick at 10pm to give him the tamiflu and he was not to happy about it. He has to take it in liquid form and not the fun (starburst coated) pills. Greg feels he will still probably leave today, but not until late afternoon, after rounds. His WBC went up slightly to 1.9. Greg did not have any other numbers, but I will keep everyone posted. We figure we will be in 'lockdown' this weekend as a precaution for Nick. More to come.

Nick is in the Hospital

Update as 12 noon today:
Nick's fever has broken. He is feeling okay. The doctors have decided to go ahead and give him Tamiflu as a preventative. They also did a nose swab to check for the flu, H1N1, and any other viruses he might have. He is resting comfortably and watching Indiana Jones. We may be able to go home tomorrow, but we will have to wait and see how his counts are.


Hi Everyone,
I guess there was a reason for his ANC to drop over a week. I am back from my trip and glad I jumped on an earlier flight to be home. Nick had a great day today and a playdate with Michael. I was able to give him a hug before he fell asleep on the couch. Greg carried him to bed and he seemed to be fine. Nick ended up coming into our room around 11:30pm and we noticed he was feeling very warm. We took his temp. and it was 101.1. I mentioned before and I have to repeat it, we were waiting for this. I took him into the ER and the place was packed. We were both wearing masks and I was surprised to see many parents not wearing masks while their children were coughing away. I found the first person I could and asked for a room right away. I guess I thought I would be prepared for our ER visit, but it does not change. Nick did not like his port being accessed and cried through it. We are now up in the 'red' pod, a familiar place but it has been since March the last time we were here. Of course there are new restrictions, no visitors under 18, including siblings and the doors remain closed into the pod. The precautions are good. The doctor wants to start him on tamiflu. They do not think he actually has H1N1, but because of his counts and fever, it is a precautionary measure. His ANC is 60, pretty low from just Monday when he was clinic. His White blood cells is 1.2 and red blood cells at 9.4. I'll try to keep everyone posted on his progress back to a healthy bill. I am going to try and get some sleep. I think I have been up for 24 hours now. Take care. Karen

Holding down the fort without the boss here

Karen is away on business for the first time since Nick was diagnosed. The boys miss mom but enjoy running all over me. Nick finally got his H1N1 shot at clinic Monday. They will not have any for Karen or I as they first anticipated. Our Nurse was telling me that the staff has not received it yet and may not get it through the clinic either. We are still scurring to try and get the other two immunized but we don't know when that will happen. Nick had a little unusual drop in his APC this week. It went from 2400 to 1200 even though he was on steroids (Usually steroids bump his APC..the opposite happened.) It could be attributed to the fact that Nick had a high white blood cell count last week that we think was caused by his body fighting a little cold, therefore his APC was pushed higher and now that his white blood cell is back down the APC dropped as well. No large concern shown by our Nurse Practitioner, I guess we will see what next week brings. It is now time to get kids to bed. Have a great week.
Sincerely,
Greg