Monday, October 10, 2011

Anyone even looking at this?

I thought that setting up this blog would be a good way for me to post all things about John for those people that we do not talk to on a regular basis. I guess my idea and my willingness to post these things do not go hand in hand. Most of the time I can't think of anything to say or I don't feel that it is important enough to tell. I guess I thought it would make me feel better to write about it but I just get more upset trying to think of how to write it out so that it sounds like I know what I am talking about. All that being said I will continue to post knowing that for some people this is the only update they receive. Thank you again to everyone for keeping us in your thoughts and prayers.

We have officially FINISHED our radiation therapy. On the 4th of October we completed our 58th treatment, the last 30 being on his lungs. No more radiation!!! He took it really well except for the large burn on his back from where the laser came out. He doesn't really complain about it except if it gets scratched. I guess it looks worse than it feels.

We are still going with the chemo. Today started week 26 and we have 5 days this week with 24 hour hydration. He will be hooked up to fluid until sometime Saturday afternoon. In the last post I mentioned how the  round of 5 day chemo caused a very bad reaction so the next time we were trying to be prepared. They started him on antibiotics 5 days prior to the start and he continued to take it for the next 24 days. He was hospitalized for a few days due to dehydration from it coming out both ends.  He had to come of that medicine early due to a negative reaction.I know its gross and shouldn't be talked about but it is all a part of the treatments.  The meds that we are getting this week are different so hopefully he wont have as many problems.

John is starting to get hair back but will probably lose it again. His hair seems to be darker than it was before but we wont know for sure until after treatment is done. He had a few good days so we went to apple hill with my brother and his family. John was tired but had a really good day. Not much more to report but I will post some pictures soon.

Tuesday, September 6, 2011

The rest of August

 The second week of August John was away at oncology camp. He left on Monday the 8th and came home on the 14th. He had a great time. The doctor that was there for the week switched his feeding from overnight to doing them throughout the day. He wanted John to be able to sleep under the stars with the other boys. John was sick the first few days from the amount of food given in such a short period of time but they figured out what worked best for him and he was fine the rest of the week. He swam, fished, did boating and archery. He already wants to go again and also wants to be a counselor at the camp when he gets older.

The third week of August was a really good week. John had a break from Chemo so he felt good most of the time. He turned 10 on the 15 th and we had a small party for him at Johns Incredible pizza in Roseville. It was very last minute so some of his friends could not be there. We have already told him that we will take him and a few friends to play laser tag when we get a chance. Originally that is what he wanted to do but most people couldn't make it because of school or sports. Also that week he got to make his wish!! We went to the Make- A -Wish building in Natomas so that they could interview John on what he wanted. When we got there they had gift baskets for all three of the kids. Jason and Jessica were so excited because they got something that was just for them. So after the interview John got to go into this room and put his wish( it was written on paper) into the wish jar. The room was blue and sparkly and played the "celebrate" song after he put his wish in. He wished to go to Hawaii and visit Pearl Harbor and go snorkeling. He has been really into the history channel and war ships lately. He has seen pictures from my scrapbook from when Big John and I went with our friends a few years ago. We had such a great time! So now we just wait while they plan everything. We do have to discuss travel dates with our doctors though.

The third week of August was a full 5 day chemo. This combination of drugs had a really negative effect on his digestive system. He has not had this combination since our first chemo round so the side effects really caught us off guard. He also started his home school. It is not actual home schooling because the district assigns us a teacher and supplies all the items necessary including books. The teacher comes 3 times a week and works on things and then we do the rest of the work in between. Radiation started this week also.

All in all the month wasn't so bad since John had a two week break from treatment and had a chance to do lots of fun things.

Monday, August 22, 2011

Update for first week of august

Since I haven't posted in a while I figured I would just do a few things at a time. Then you guys have more to look forward to!

We have had a new addition to our family! On August 4th my sister had a new baby named Easton. I made it to the hospital just 10 minutes after he was born. I was trying to make it but couldn't. I took John John with me because he wanted to see the baby. He was so good at the hospital. He was entertaining his cousins and making jokes like usual. After all the commotion had died down he sat in the rocking chair to hold the baby. He was so gentile and loving. He was talking to the baby and playing with his feet. I just loved seeing him like that.

John had a wonderful time at the RPM fundraiser. As some of you may have seen we were featured on the CBS channel 13 news at 10. John told his story and they told a little of ours. The first correction I need to make is that we are from RIO LINDA not Natomas. I don't have anything against Natomas but we live in such a great community! Our community has been very generous and supportive since our diagnosis. Since I can't correct the news this is my only opportunity to say that we love our town!

So he went through a drivers training class with his friend Chad and the got their RPM licenses which are good until they turn 16. They can go race now without having to do the training, which is nice because for junior drivers the class is 2 hours long. When they finally got to race it was so cute to see him with his racing uniform and helmet on. I know that the picture is kind of blurry but you can get the general idea of what the cars looked like. He just had such a good day! Thank you to Dr. Kris from Core Chiropractic and to RPM for making this such a wonderful day for our family.

More updates to come!!

Monday, August 1, 2011

Fundraiser at RPM

One more thing that I forgot to add. Our friend Dr. Kristofer Chaffin from Core Chiropractic Center in Folsom is putting on a great fundraiser for John at RPM in Rancho Cordova on August 7th from 11am to 3pm. Our family will be there if any of you would like to come join us. Below is a the flier that you need to bring so that they know you are there for John or you can go to the website below and print out the flier there.


Little Johnny is in a brave fight against stage 4 cancer. To learn more about his story, please visit his blog and website.

RPM will donate 50% of money collected from this event.

Hot Lap winner walks away with $400 cash 
Entry fee is $100 & limited to first 24 contestants, call Ryan at 916-214-6413 to register (1st come first serve basis).

Enter to win 20+ raffle prizes
If you'd like to just come for a friendly race, you can do that too. Please print and bring this email to the RPM cashier.

Interested in sponsoring this event? Please contact

Sponsorship is $150 and includes your logo on the event website, marketing collateral and the welcoming banner at RPM during this event. This is limited to the first 20 businesses and only 1 business per category allowed. Payment must be received by July 29th at 10am.

© 2011 Core Chiropractic
149 Iron Point Road, Folsom, CA 95630
+916 353-2673

Evaluation Time

Last week John was sick and very tired.  I thought that something was wrong because he didnt have his usual energy. We have to get blood taken twice a week so I assumed that something was off. When we got the results back I saw that I was right.We had to get a transfusion of blood and platelets. That put off chemo until this week. If his red blood cells and his platelets are low his body can not handle the stress of chemo also. Other than not feeling well and his dad and I constantly waking up to care for him and give him medicine the week was pretty uneventful.

Today started his 17th week/ round and is a 5 day chemo. We hydrated him all night through his G-tube ( stomach tube) so we thought that he would be ready to start this morning. We had an appointment at 8:45 so that he would be done and ready for his scans by noon. He wasn't hydrated enough so we had to wait and get fluid. then we tested his urine and hydrated and tested and hydrated and so on...
He was finally ready around 11:30 but there wasn't enough time before his scans. We went over to radiology and he had an MRI done of his head and CT of lungs. He was able to do the MRI without sedation which is a first for him. He was very still and didn't complain. That cut back on the amount of time we had to stay there because he didn't have to go to recovery.

We then had to go back to the clinic to get our scheduled chemo. Since the scans took so long we were only able to get one of the drugs that he needed. For the rest of the week he will get an increased dose of Itoposide to make up for the missed dose today. The doctor said that it shouldn't affect the way he feels or anything.  He also is connected to a pump that is hydrating him 24 hours a day until Saturday. The bags have to be changed , which usually means the middle of the night. At least his port is only accessed once this week. Hopefully by the end of the week we should have the results of the scans. We were finally able to leave the hospital around 4:45 but we have to be back again at 9:30 tomorrow. It was a very long day and he was very tired.

The pictures below are ones that were taken today. the first one is from tonight. He is sleeping in a chair in the living room in front of the TV. He has his food and fluid hooked up on the pole and of course his bucket next to him. The other picture is from today at chemo. He was drawing a picture.

Tuesday, July 12, 2011

So far so good!

I guess I haven't updated in awhile so I will try to remember everything that has happened since the last update. I am sitting here waiting for the dog to go potty and listening to the coyotes howl. She is much more interested in the frogs hopping around than going potty. It has only been about 20 minutes so we are going inside soon.

So back to the update. After they found an antibiotic that worked and his culture finally came back negative,  he was scheduled for surgery and then his 5 day chemo. We ended up staying in the hospital for that round because the clinic is not open on the weekends and it started on Thursday. His surgery was to put in a port to replace his Broviac. A port is a metal disc with a silicone bubble on top and attached to a catheter. The catheter goes into a major vein that goes into his heart. It is all underneath his skin so he can now go swimming and shower like normal. It looks like a lump under his skin. He was in pain for the first day after surgery but didn't complain after that. He also got his stomach tube replaced which fixed the leaking problem! We also spoke with the dietitian and we found out that the first calorie amount we were given was wrong. We were giving him 1700 calories per day when he actually was supposed to be getting 2400. We have adjusted that so he has actually put on a few more pounds. We are officially back in the 70s!!

He received his 5 days of chemo and got to come home on July 4th. The only thing he doesn't like about the port is that his twice weekly blood draws now have to be done through his arm or hand. Also he chose to not get the insuflon put it in his arm for his round of shots so we have to give him one every night.  It lasts about 10 days depending on his white blood cell count.Thank goodness for numbing cream. If they could only find a way to make the medicine not burn as it goes in.

Of course the first thing he did when he got home was go swimming. He was in the hospital for 2 1/2 weeks so I was afraid he was going to wear himself out. He swam for almost 3 hours. He was very tired and didn't feel very well the next day but still got in the pool again. He loves being able to swim and will do it everyday if I let him, sick or not.

We have had two blood draws since he came home and he does ok. He panics a little bit but he is getting better. On Thursday it will be the first time that his port is accessed while he is awake. It is accessed with a butterfly needle that is stuck through his skin into the silicone bubble under his skin. that is how he gets his chemo and meds while at the clinic and hospital. The clinic nurses are very good at accessing it but the hospital nurses told me that they don't always get it on the first try. I hope it is easy on Thursday.

One last thing. He is losing his eyelashes and eyebrows so he doesn't always let me take pictures. He only has a half of an eyebrow on one side and about six eyelashes. Hopefully I can get a good picture soon.

Saturday, June 25, 2011

Still here....

We are still in the hospital. His blood cultures came back with 3 different kinds of bacteria. His cultures kept coming back positive so they decided to remove his Broviac tube. That was removed on Thursday. Luckily it was only a small procedure that required minimum sedation. While he was sedated the put an IV in his hand so that they could still administer meds. When he woke up he freaked out because he is terrified of needles. It took him most of the day to get used to the IV. The blood that was drawn from his hand was still testing positive. Two of the forms of bacteria are gone and one was proving resistant to all the antibiotics they had already given him. They finally found one yesterday that is working.

Today was a big day for him because of his fear of needles. They had already told him that he was going to have to get blood drawn from his arm so he was very anxious . They put numbing cream on his arm and left it for awhile to numb up the area really well. He did ok and said it only hurt for a few seconds. He was over 3 minutes after they were done. For now we are waiting for test results to come back but that takes 48 hours so we will be here until at least Monday. He is also being put on the schedule for surgery next week to get another port put in.

So it is safe to say that after 7 days he is officially bored! I brought him more legos and more movies to try to make things a little better. We will see how it goes. I can only watch the same episode of a show so many times. I think I have seen the same episode of the Disney shows at least once a day. When are they going to play something new??

Tuesday, June 21, 2011

Blood Infection

As you can guess john is admitted to hospital once again. On Saturday he was really quiet and not talking much. He felt warm so I took his temperature. It was 99.5. He got up and moved to the living room and his fever went away. I was setting up his salt water tank and he still hadn't moved much or even talked much. He told me that his mouth was hurting. He is developing sores in his mouth due to the effects of chemo. About 30 minutes after he went to sleep he woke up and started vomiting. I took his temperature which was 100.8. He was also shaking uncontrollably. We called the doctor and he said to go to the hospital and they would have a bed waiting. They took blood for cultures and immediately hooked up some fluids and started 2 kinds of antibiotics. We knew we were going to be there at least 48 hours waiting for results. About 4:00 am Monday i was told that his blood was growing something but they still needed to identify it.

He spiked another fever with more vomiting about 3:00am that same morning which means they have to take another set of cultures which adds 48 more hours to our stay. If his Broviac ( the catheter that goes into his heart , where he receives his chemo and fluids) is the source of infection it might have to be replaced which is more surgery. They are looking into the options now.

We are now just waiting for more results to move on to the next step. He was supposed to start a five day chemo this week but that has been put on hold.

He is doing good and even took a shower but he is extremely bored!!  I will update again when we get more info.

Tuesday, June 14, 2011

Just an update

I know we don't get on here much but we usually post when there are changes or treatments. So last week we did get to go home Wednesday night. It was late but at least John got to sleep in his own bed. We continued to give his anti nausea medicine but by thursday night he still ended up being sick. We have been lucky that with enough meds the vomiting is only a few days . It doesn't last all day but we never know when it is going to happen. He could be fine and then 5 minutes later he is sick. We have been vomit free since Sunday!! Some people might think its gross to talk about but it is part of our reality.

Yesterday (Monday) he had another dose of chemo. This one doesn't seem to make him sick so at least he gets a break for the rest of the week. Next week is another 5 day treatment which takes about 3-4 hours each day. He also has an echocardiogram on Friday to make sure that his heart is strong enough for the next 48 hour chemo session. The combination of chemo drugs for the 48 hour are medicines that can damage his heart or weaken it. So every 2 or 3 sessions the need to make sure it is functioning properly. Also when he has next weeks chemo he also has to be attached to "his backpack" which is a bag that he carries around with his saline bag and pump for 24 hours a day for a week. This is the round of chemo that can damage his bladder so each day he gets a bag of saline with meds added and then each one after that is just normal fluid. He hates being hooked up constantly and having to pee constantly. Who wouldn't though.

We also had a followup appointment with his radiation doctor and that went well. He believes that his hair should all grow back (after our entire treatment is finished) and that his eye function is almost back to normal. He still has some double vision when looking to the far right. We are scheduled to start radiation on his lungs in about 2 months but the will do a CT scan before then to see how the tumors are responding. We saw a significant improvement from the first 6 weeks of treatment so hopefully it will only get better.

We had a nice night outside in the shade tonight. We put blankets on the lawn and looked at saltwater fish online. We are getting a small saltwater tank that my brother is no longer using. John loves the ocean and all the fish and things that live in it. It will be great for him to have something to help with relaxation. He has recently told me that he wants to be a marine biologist. Of course the kids took a bunch of silly pictures on the computer so I thought I would share a few of those.

They were having such a great time being crazy. We even talked about camping out in the yard since John cant really travel anywhere. We are trying to find different ways to do the things he loves. Tents and sleeping bags and a fire pit for smores! How much fun would that be!!

Hope you all are well and please leave a comment if you have any questions or even an idea of stuff we can do at home so that the kids can have an enjoyable summer. Thank You.

Wednesday, June 8, 2011

Another Chemo hospital stay

We checked in Monday at 8:30 am but his chemo didn't start until 6:30 pm, kinda funny and annoying all at once cause you're waiting all day to get this over with on time so we can go home on schedule, the longer you wait the longer we have to stay here. Monday Poppa Lee and Nanna came up for a visit, and then later on that night Kris stopped in and brought Jamba Juice and said Tyreke was getting ready to go train in Southern Ca for a little while and then would be back, we talked about the next fundraiser at RPM off of bradshaw and hwy 50 and John John liked the idea, then the nurse came in for John John and had to put ointment creme on his previous staph infection sores, one of his sores were on his lower region and she didn't want to put it on there cause it embarrased her and he was awake so that was confusing to me cause that didn't make any sense she's a nurse, I don't know what she's doing being a nurse if she cant handle that, so I told Kris, excuse me I have to do it, when I went to put the creme on his testis the sore wasn't there so I don't know, anyway he was exhausted and fell asleep soon after that.

Tuesday Ange came back to the Hospital cause I had to go to my union hall to take care of paperwork and my nephew was helping me on the house. So Ange stayed with him Tuesday and tuesday night while I watched Jason and Jessica.

Weds. morning I came back to the hospital and spoke with the Dr. Adams about we should get released tonight after 6:30 right?, he said well not necessarily he said he needs to be hydrated first before he can go home and he's probably going to be sick where he'll loose a lot of water you might have to stay thursday and friday, john john isn't happy about that, we weren't either but if it's going to make him feel better and his naseau under control it's what we have to do.

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!

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.