Sunday, May 22, 2011

We made it through another week!!!

Hello Everyone,

We made it through another week!! This week seemed like it was a very long one. Maybe it was all the back and forth and that it takes about 3 hours each time. He also had to get the thing put back in his arm for us to give him his HCG shots again. That didn't go so well and we found out that 10 days out of every month until the end of treatment he will have to have the shots. Yuck! John handled this round well for the most part but has been sick a few times. It mostly happens in the morning , early. One thing that has happened that John didn't mention last time is that his hair is falling out. We knew it was coming because the 48 hour chemo that we had is the one that causes that to happen. We noticed it one day when he gave me a hug and his hair was left all over my shirt. He thought it was funny and continue to pull clumps of hair out and stick it to my shirt. Thankfully that got old quick so he only has a few patches missing. I shaved it down more so that it wasn't so obvious This was the before picture. You can see where he pulled out some of it.

So after a long week he has had a pretty good weekend. On Saturday he got to play with his friend Joe and had a great time. He fell asleep in the car on the way home. He was sooo tired. Today we had the honor of throwing out the first pitch at the Rivercats game. We weren't sure if he was going to be able to go because he was sick this morning, but he managed to pull through. For some reason he has become very shy lately and didn't want to throw the pitch so Jason got to do it instead.  Jason thought it was great!!! Thanks to the generosity of the Rivercats we got to enjoy the game from a suite. Our original seats were in the sun so we would have not been able to stay. John got to watch the game and enjoy his day out. Once again Rio Linda Little League had a lot to do with this day. Thank you Tina Geer and Sean Smith and all other members of this wonderful league! They have been so great to our family!! Gotta love that small town feeling

This is a picture of John at the game playing games on a phone.It was right before we left so he was very tired. All in all it was a good weekend and we only have one doctors appointment this week. We have another 48 hour chemo on the 30th.We are going to try to enjoy our break, except for the schoolwork.

Tuesday, May 17, 2011

Saturday to Monday starting on a 5 day chemo

This weekend John John has had the company of his Aunt Sheree and cousin Brandon and cousin James come for a visit, they played games like apples to apples and xbox and even went outside and played a few games of basketball. On Sunday, his cousin James went home he said his good buys but let him know he'll be back in a couple weeks for the next fundraiser a public event at Gold's Gym in Natomas on Saturday June 4th from 10a to 5p, 1900 Del Paso Rd, Sacramento, CA.

On Sunday night, Aunt Sheree and Cousin Brandon offered to watch John John and Jason and Jessica, while Mom and dad went out to dinner. After we hooked up his feeding tube and set up his new pump for his saline bags to his broviac tube to hydrate him 24hrs a day while he gets his next 5 day chemo, set up his 1000ml bag and left for dinner, while we went to dinner, Aunt Sheree and Brandon asked the kids what they wanted and John john asked if he could get a cheese burger and fries, so by the time we came back from our dinner, he surprised us with eating his small fry and half of his cheese burger, he said it tasted good, we were surprised and happy he's finally wanting to eat anything. Around 2 AM his broviac Pump started alarming so I came into his room, oh this is dad, started to change his saline bag and it's 3 times the size of his bag from the hospital that we originally rec'vd and there were 3 ports on the bag, that was a little confusing, as luck would have it I picked the right one to plug into hooked it up primed the pump and looked at the settings and... well the pump is set up for a saline bag for a max of 1000ml, so I didn't see any way of changing it and figured as long as the feed rate didn't change it was ok, I'd just have to wake up sooner and reset it to pump again 2 more times until I changed bags,no biggie we'll ask the nurses tomorrow at our appointment.

At his appointment he gained another 1lb, yayy!!! he had his chemo and we wheeled his pole with the pumps of the chemo and saline bags over to a table where we played connect four, and checkers and some other games. while he was playing a few of the board games with his mom I asked about the bags and ports in the bags and the gave us new 1000ml bags so there no confusion. 

Sunday, May 8, 2011

Admitted Again!!!

So on Thursday morning when we went in for the blood transfusion John had a temperature of 100.5. For most of us that wouldn't be a problem , just take some Tylenol and it goes away. For John that is an automatic admit to the hospital. Since we were in the clinic, which is one building away from where the hospital rooms are , we had to get in the ambulance so they could drive us around the parking lot to the other building. Isn't that crazy? I guess it has something to do with liability or something. I don't understand why he couldn't just go in a wheelchair across the walkway to the other building. Would have saved them a lot of money!

So once we were in his room they  immediately started him on antibiotics and took all the blood work for the cultures that they needed. At that time they were also doing the type and match. They also took a throat culture since I had just had strep throat the week before. His fever was not going up so that was a good sign. Since it takes 48 hours for the cultures to come back we knew we in there for at least that long. He continued to be checked for fever but it never went up. Later that day he received his blood transfusion which he tolerated well.

Friday was just a waiting game. We new that the results still had another 24 hours so we just waited. I don't think I even left the room that day. He got 24 hour feeds to make sure he was meeting his caloric needs. We are giving him 1800 calories per day all through his tube since nothing tastes good to him. The results finally came in on Saturday and we were cleared to come home. He was so happy to leave! We added one more medicine to list. It is a combination anti-anxiety and appetite stimulant. He has not been sleeping very well or eating so we are going to see how it works.

On another note I just received a text from my brother who told me that Johns t shirts were given to a local uninsured hospital in Cusco. He is making a difference in Peru! The back story behind that is that his friend is doing a hike down there and has dedicated it to John and his constant strength. Another thank you to the people that are keeping him in your prayers and doing things for others that make a difference!

Wednesday, May 4, 2011

Blood Transfusion

After we got out of the hospital last Friday John was doing pretty good, until Sunday. His stomach did not like food or liquid very well but luckily with the right combination of meds we were able to get it under control so that he could have his tube feeding overnight. Luckily that went well and his stomach has been fine since. We are still having a hard time getting him to eat solid food but we are working on it. He ahs to try to have at least a handful of solid food per day just so his stomach still knows how to react to solid food.

We have been giving him the HGH shots everyday but today his blood work came back and he only has about 100 white blood cells. That means our house is on lockdown! We can not have any sick people or people that have been around sick people at our house. John can not go anywhere except the doctor, which ironically is where most of the germs are, until his WBC counts come back up. It is difficult to be germ free with two 6 year olds.

Tomorrow is another first in our treatment. When we got a call about his blood they also told us that his hemoglobin was down so he has to have a transfusion. We are going in at 9:30 to a blood type and match. That is supposed to take a couple of hours. then we have to do the transfusion which will take another 2 to 3 hours. It will be a long day. I hope it all goes well.

We got more cards in the mail this past week so I wanted to stay thank you to the cricut card fairies. We love all the cards and he loves to see what they all look like. Thank again to everyone for all the cards and gifts!