Wednesday, April 27, 2011

Longer stay at the hospital

John should have been able to come home today but he now has to have another procedure. They are putting a small catheter in his arm so that we can give him daily injections of HGH (human growth hormone). The chemo that he is receiving now is a different set than he has gotten before and it is much more aggressive.  It will cause him to stop producing the HGH naturally and also take away his immune system and hair. It started on Monday night at 9:30 and just stopped at 9:30 tonight. It was a full 48 hours. He has to be off chemo for 24 hours before that can put in the catheter. It also has to be changed once a week. He hates needles so this should be interesting!He has handled it well so far. They have been doing a good job keeping up on anti- nausea medicine and so far no vomiting!!

A funny thing happened today. This was the first day that I was able to go to the hospital because of my strep throat. He told me when I walked in that his pee was orange. I thought "that can't be good you must be dehydrated." Then when he peed it was ORANGE! It took me a while to figure out why it was that color until I looked at his chemo meds. The meds are red! Red and yellow make orange! DUH! I don't know why I didn't realize that sooner! Just had to share my story. I thought it was funny.

Now for the most important part, for those not on facebook or twitter, we got the results from the MRI and it shows that his tumor has shrunk approximately 40%. AMAZING!!!! His eye is slowly getting better but will just take time for his nerve to heal.

Thank you to all the wonderful ladies that have sent beautiful cards ! He is enjoying them all.

Monday, April 25, 2011

Back in the hospital

John is in the hospital for another round of chemo. This one has to be in-patient because it runs overnight. Hopefully he will be able to come home wednesday if all goes well and he is feeling ok. He is doing good with his feedings and prefers to put the tube in and remove it himself when he is done. His stomach has healed well and he is not experiencing any pain from that now. He is still very skinny(65 pounds) so we are also doing feedings during the day instead of just overnight. During the day we just push it through a syringe instead of using the pump. He also does that by himself. He doesn't really eat. It not that he is sick to his stomach, he just doesn't have an appetite and most of his taste buds are gone at this point.

This round of chemo is the one that will make him lose the rest of his hair and knock out his immune system. That sucks when you have other kids that still attend school and bring home a ton of germs especially because they are in kindergarten. I will not be able to be at the hospital with him this time because I just came down with strep throat and just got antibiotics. The doctor said it is best to stay away for 48 hours instead of 24 because of his treatments. It is so hard not to see him. Luckily we can skype each other because he has his ipad and I have my computer.

I will update more when I get more info.

I hope every one had a great Easter with their families!

Wednesday, April 20, 2011

Just resting

It has been a few days since I have posted things so I thought I better jump on and do that. First I would like to thank Monique Griffith for posting a link on her extremely popular blog so that people can come visit our page. She wrote a nice little paragraph about John and asked people to send cards if they can. (John likes to get things mail). We got our first card today and he really liked it! I have also picked up a few followers ;) I love all the scrapbook ladies!

We came home on Monday and did our first tube feed. We got it all hooked up properly gave his medicine through it and then set the pump to feed over the next 12 Hours. Throughout the night I kept checking in on him to see if it was working ok. Toward the early morning I was wondering why there was still so much formula left. It turns out I set the wrong amount per hour. I was only giving him half of what he was supposed to get. Lesson Learned!! Last night went smoothly. This morning was hard because I really needed to remove the long tube that goes from his stomach to the pump but he was to afraid it was going to hurt. After a lot of whining and arguing we decided that he would remove it himself. He did and it didn't hurt at all! Tonight it was more of the same except it was to put it back in. Again he did it himself and again it didn't hurt. One less argument!

We did have an MRI on his head on Monday but we don't results yet.

Sunday, April 17, 2011

Good News!

John had a CT scan this afternoon on his lungs. A few hours later his Dr. called and wanted to tell us that the CT people called him at home because they were so happy to tell him that the two tumors have shrunk!! His Dr is very happy with those results because they are already responding and he hasn't even gotten the most aggressive chemo yet. When i told John John the good news he said " you what would be even better news, is if I got to go home now." I told him he would be home tomorrow. He gets to come home tomorrow after his MRI. Hopefully we will get good news from that also. They also increased the amount of food that he gets through his tube. They need to make sure he can handle a little more before he goes home.

Saturday, April 16, 2011

Started feedings

He started using his feeding tube tonight. They are starting with 1/3 the amount he needs and then increasing each night. We are probably staying in the hospital until Monday so that they can make sure the tube is working properly and his stomach is handling the amounts. He slept most of the day but when he was awake he was cranky. He doesn't like being in pain. They are controlling it pretty well but he still has to get up and move and go to the bathroom .

I was able to leave the hospital for a few hours so that I could go to Jason's baseball game and take a shower. My dad came and stayed with him. There was a bake sale for John today and that went well. Thank you to all who donated baked goods and to all who bought those treats. I heard there were some goods things there!

Hopefully the formula will stay in his stomach so he can have a good nights rest!

Friday, April 15, 2011

Support bracelets

We have made some bracelets to sell and help spread the word about childhood cancer. They are metallic gold and say : John Hoffman Jr. Beat Chilhood cancer !
If you are interested in purchasing one please contact us. They are $2 and some of the profits are going to a local organization that helps families deal with this horrible diagnosis.

We have a new feeding tube

As some of you may know John had a feeding tube put in today. It is called a G tube and goes directly into his stomach. We can feed him regular food but it has to be blended into mostly liquid. We also have a formula that can be given to him. The plus side to this has many things. First, he does not have to eat to meet his daily calorie intake. Second , this will help him gain weight back since we are down between 15 and 20 pounds. Third all of his medicine can be given through this tube including pills. We have to crush the pills and add water to put it through the tube. That makes it easier for all of us since there will be no more arguing about meds. And finally he will not have to have the nasal tube hanging across his face! That is very important for a 9 year old!

The surgery went well but he has been very cranky the whole night. He is getting lots of pain meds to keep him comfortable but it hurts the most when he has to get up . It hurts when he takes a deep breath or tries to sit up. Overall he has been very strong through the whole thing. Tomorrow we get to learn how to do the feedings on our own and hopefully get to go home before the end of the weekend.

Thursday, April 14, 2011

Last day of radiation

We are finished!! For now anyway. We have to go back in about 3 months for his lungs. After our appointment today he went to toys r us to buy some toys with his radiation money. For every treatment he got a dollar and five for the last one. We met with the doctor and he said that the radiation continues to work for about 2 months after he is finished. He also told us not to panic if we don't see alot of improvement on his MRI because it could take a few months to see results. There have been slight improvements in his eye movement and double vision. He is glad to be done with that.

Tomorrow we have surgery so I will let you all know how it goes.

Wednesday, April 13, 2011

News from today

So it has been confirmed that John will be having surgery on Friday afternoon to put in a gastric tube for feeding. We spoke with the doctor and decided that this would be best for him. He is familiar with this type of tube because his grandpa has one. We have tried the nasal tube and that didn't go well. His next round of chemo has been postponed until the 25th allowing him to heal from this surgery first.

Radiation Appt

We are at the radiation appt today one more after today then we see the dr tomorrow for last radiation treatment to his head.

Tuesday, April 12, 2011

Trying to figure out this design!

I have discovered that setting up this blog was easy but trying to add special things to it is not. At first I had the list of followers and it showed their pictures. Now it just shows followers and no pictures! I have removed and re added and it still isn't working!! The page is constantly changing because I am much less computer savvy than I thought I was. Hopefully I can work on it more tomorrow. If anyone has tips or tricks please let me know.
Went to dr to check out a rash where his broviac tube is in his chest, result of a delayed reaction to the disinfecting cleaner when we change his bandage every week. So is going to be getting a feeding tube on Friday it won't be going thru his nose it will be going in his stomach referred to as a gastric tube so we can feed hI'm when he doesn't want to eat or can't eat cause of the radiation is starting to affect his throat and swallowing. This Friday he'll have that procedure and be admitted until he gets out after his 60 hr Chemo on Tues or Wed.

Waiting at radiation

He just went in. Jason and Ange and myself waiting In the waiting room.

Monday, April 11, 2011

First Post

This is my first post to this new blog. We chose to go to this site because it allows friends and family the option to donate directly on our page! We were getting many people calling and asking how they could donate online. This was the easiest way. This will go to the River City account that has been opened in his name.