Back to clinic today

Just when Karen writes that all is cool. Not so much! Nick woke up in the middle of the night and threw up. He had a low grade fever 99.4. He stayed in bed with me and Karen went to the couch. Nick then threw up again at 4am and his fever spiked to 100.3. Nick went back to sleep only to awaken at 5:30 and do it all over again. By 7am he threw up a fourth time and then his temp went to 101. Karen got dressed and brought him to clinic. Thankfully his counts were good. I don't know all of them as Karen just stated that his APC was 6900. He got some antibiotics and two bags of bolus to help make sure he does not become dehydrated and back home they came. Hopefully he gets through this quick and can keep on track so that he can enjoy his vacation next week.
Greg

Everything is Cool

Tuesday, July 13, 2010Everything is Cool
It is actually very hot here in MA and we are in need of some rain. I do say cool because Nick is great. He finished his steroids on Sunday morning. He started complaining of a headache, his throat hurting on Saturday afternoon but we believe this is from his 6 yr old molars growing in. His dentist appt. was on Monday and they confirmed that a couple of them are starting to pop through his gums. I am sure it is sensitive and we were able to give him some Tylenol for it. He had a very busy weekend with the Wykoff family in town and the family sleeping at our house for the weekend. We enjoyed the friends coming over to join us on sat. night. All the kids had 4 wheeler rides on Sat. and Sunday.

I took Nick to clinic on Monday. It was very uneventful and the place was quiet. He recieved his Methotrexate and I booked him an appt. for this Friday. We are leaving for Camp Sunshine on Sunday and Nick needed to recieve his next weeks's chemo (Methotrexate only) before we go. On Friday they will access his port, check his counts and if everything is okay give him his dose. He does not mind because he knows we will be able to go on vacation as scheduled and not a day late.

I am not sure where to start the post today: the fun stuff or the frustrating stuff. I will start with the frustrating and end on a happy note. The weekend turned out awesome and I will get to that in a moment. I am now at the ER with Nick because he spiked a fever this afternoon. He was warm most of the night but no fever. Greg brought him to clinic this morning and he was fine. His counts are pretty good to. He mentioned to them about just giving him an antibiotic because of last night and they said no, no fever. I brought him to the ER tonight. As usual his port is not accessed yet. The nurses spent about 35 minutes talking about the process (which should have alerted me to start with) and then proceded to try and access. The needle was not pushed in enough at all, not sure what she was thinking and Nick started crying. The whole process sucks. I am now waiting for a 5th floor nurse to come down and access him. I guess it will be a long night because we usually average at least 5 hrs after the port is accessed. I am sorry to complain and I think I should be greatful this is only the frustrating part of the whole process. I know we will not be spending the night. I am pretty sure he will get an antibiotic and be released.

Updated: Port accessed by 5th floor nurse, first try and she did great.

Onto the fun stuff: The weekend was a blast. As I mentioned before the boys had so much fun on the beach and jumping off the boardwalk. They told everyone at the party on Sat. We spend the weekend (yes, the older boys & Greg camped out) at The Holmes House. Thank you so much for having us. The kids swam in the pool and another milestone for Nick: he actually swam on his own in the deep end. There are definitely times lately I have said to myself: 'This kid has cancer?' It was great to see our friends and I know there were amazed to see how well Nick is doing. They had lots of questions for us in general and even some of the kids asked questions. The people who know me understand that I am not afraid to talk about Nick, the whole process and the fears we will always have. He is a strong little boy. Colby was fantastic this weekend and is enjoying his summer. He is excited to tent it again. My older sister Christa and her kids are up for the next 2 weeks so we are looking forward to the time we get to spend with them.

Happy 2nd Birthday Tommy

Tom will be 2 tomorrow and our day is filled with fun, fireworks, pool and spending time with close friends. I have ordered an American Flag cake to celebrate with Tom tomorrow. I can not believe he will be 2. He was only 3 months old when Nicholas was dx and there were many nights I was not home with him.

The boys slept over Auntie Michele's house at the Cape last night and Greg, I and Tom drove down today. We had an awesome day and the boys ended up jumping off the bridge and into the water. Colby was very scared but once Greg picked him up there was no going back. Nick had Brittany hold him and two of them just counted to 3 and away they went. As everybody was packing up the beach stuff, I sat with Tom in arms for awhile. It felt so good to hold him and listen to the ocean. Of course as I thought back over the past 2 years and how much Tom has grown tears were coming to my eyes. He has adjusted to his surroundings and continues to challenge us each day. We love you so much Tom.

I forgot to mention that yesterday a playdate for nick turned into a Mohawk. He lookos so cute and it really suits him. I will post pictures of him soon.

Have a safe and happy 4th of July. Karen

Our Three Sons

Wow! Our 3 wonderful boys. We recieved the pictures from Flashes of Hope this week and I could not resist uploading this one. Flashes of Hope came to Hole in the Wall over Mother's Day Weekend and took a bunch of pictures for us. They are a non-profit organization and their goal is to put smiles on kids faces and hold the memories of them. Colby, Tom & Nick - this picture truly relects their personalities.

You can see how far we come in year. The picture up above is 2010 and the other one is 2009 both taken over Mother's Day Weekend. Enjoy every moment with your children, they grow up to fast.

A normal day at clinic and some new athletic milestones

Nick, Colby and I went to clinic today as Karen is travelling again. Everything was quite routine except that Nick forgot his shoes this morning (now before anyone blames me, I told him, "I saw your crocks outside go out and get them and get in my car". He didn't get them). So he was trying to hide his feet but to no avail as Lori the nurse came in a pronounced to all he had forgetten them. It was pretty funny. Counts are good. We are going to increase the methotrexate next cycle and probably the 6mp the cycle after that.
APC:2100
WBC:3.3
HGB:10.9
PLTS: 392
On to my second subject in the title. Nick rode his bike with Karen and Colby to Walgreens on Saturday. This is by far the longest bike ride Nick has ever gone on and I was expecting that he would be useless the rest of the afternoon but we had forgotten about a party at my sisters house so we packed the kids up and headed over. Nick, Colby, Joey and Brian all swam across the lake with Mitchel and Alex. Yes, across the lake. They all wore life jackets but swam the whole thing. It is not a short swim so Karen and Amy went and picked Nick and Joey up in the paddle boat while Mitch, Alex, Colby and Brian all started walking back with the snapping turtle that Mitchel caught. Luckily for them they were picked up by Mitchels friend and drove home. Not sure Colby or Brian understood that the walk was a mile with no shoes on. So Saturday was quite an adventurous day for the boys and of course Tom was hangning back at Auntie Lisa's beach trying to surf on some body boards. For a kid who turns two Saturday he sure has no fear! Happy 4th to all. Have a safe and great holiday.
Greg

I can definitely state steroids were okay physically this week but not as much mentally. It is just one of the side effects we are worried about, his emotional state. He was feeling great by Mondy. We had a busy weekend with the boys…. I know you have heard this before, we like to stay busy and enjoy our time with family and friends. The boys ended their last day of school on Friday and it was off to see Toy Story 3 in 3D with Michael and Maggie. They loved the movie and I think Debbie and I enjoyed being inside in the AC, it was hot that day. Saturday was Colby’s baseball pool party at his coaches house. I brought Nick with me so he could play with his buddy Brady. Nick was so excited to go, but then decided he did not want to swim when we arrived and he would feel more comfortable going to Owen’s Bday party at the Kenshu Karate. I guess it was a good decision for all of us because he had a blast and was exhausted by the time he got home. He started to feel pain by late Saturday and of course slept with Mommy that night. We decided to go to the beach on Sunday for Father’s Day. Nick was excited to go (sound familiar) but once we got there he kept asking us ‘why are we at the beach so early in the morning, we should come later in the afternoon’. I had given him a Tylenol w/cod before we left and I think the medicine was catching up to him. Luckily he slept for an hour under the towel and woke up as our NICHOLAS. He was so happy, but decided it would be best to eat 2 hotdogs instead of swimming in the water. Colby and Tom loved the water and really had a good time together. Colby is our fish in water and Tom just follows the FUN.
I took Nick and Colby to clinic today. Colby was actually shy at first with everyone and was hesitant to see Nick’s port get accessed. (sometimes I need to take a step back and understand his feelings and what he must be thinking. I have grown so accustomed to it, like second nature). Colby is growing up and we are proud of the strides he has made with our journey and the adjustments we have made at home.
Nick’s counts were high, which we have not seen in a while. They are high because of the steroids (it can give a false read, but still okay):
WBC: 12.3
Red Blood Cells & Platelets: Normal
APC: 9,000

I believe the doctor will decide to increase his 6MP and Methotrexate starting the next cycle.

Happy Father’s Day to the most wonderful Father’s, husbands I know. My husband, my dad (Papa Boston), and Papa Charlie. We love the strength of our family has shown and continues to stay strong. Karen

Sorry for the quick update, I am in Penn. on business this week and just got online. I am traveling again next week, so Greg is holding the fort down.