Back Again!!

Since I last posted we have had 4 more chemo treatments and just as many blood or platelet transfusions.The last two treatments were 5 days each. There were not to many complications this time except from intestinal issues which are being treated by antibiotics. He continues to be in good spirits despite daily injections and twice weekly blood draws at the lab. The use of his legs come and go but will get stronger after chemo is done. There are days that  he cant even get himself into the car because of the little step up.

Jump forward to today.....

Today is mothers day. A day to celebrate our mothers for giving us life and all of the things that they do for us.  I haven't really felt like celebrating today. It was the same thing just another day except that today is the day before JOHNS LAST CHEMO!

For most people they would be jumping for joy and so excited about what it will be like to get back to a life without doctors and hospitals. Not me. I am feeling awful. On one hand , I am excited for him to go and enjoy the summer and being a kid again. On the other , his chemo was a safety net for me. As much as I hate the poison running through his body and the effects it had on him physically, I knew we were safe. Those tumors are not going to grow or spread with all the crap being pumped into his system. Tomorrow that all stops. Then What?

It started a few weeks ago when we finally started talking about life after treatment. It seemed very easy. Get through the last treatment, get scans, get his blood back in good shape and see you in August! WTH!!
I cant make it to August without him being seen by a doctor. I thought i was going to stop breathing right then. Every day for the last 15 months has been spent caring for John. I mentally had to switch everything off , including most family and friends and just concentrate on my husband and children. Can I just switch it back on? I'm thinking not. Mostly because I am still going to worry about Johns health. I am living in a "what if " world and it is hard for me to try to come out of that. What if his tumors are not completely gone? What if they are gone but they grow back somewhere else? What if I miss signs of his cancer returning? What if, What If, What If...............

Some good news........
We went back to the eye doctor and all of the bleeding is 100% better. His vision is still not 100% but it might take a few months for all of the medication to get out of his system. He is going to be seen again in August.
He is also growing hair again, including eyelashes and eyebrows! He is very excited about that. Next weekend, on May 19th, we are walking at the state capital for Walk For Wishes. It is a fundraiser for the make a wish foundation. We have a team of friends and family that will be there to support John after his long journey. If anyone reading this is interested follow this link: 

 www.sacwalkforwishes.kintera.org/2012

Our team name is John Hoffman Jr.


I will post again after treatment.

We are still here!

Hello everyone,

I know it has been a really long time since I have posted anything so I thought I would try to start up again since so much has happened. It has been a little over a year since all of this started. When John was first diagnosed we were given a sheet of paper that had his treatment schedule for 54 weeks. Just a little over a year right? Well we are still not done. There are so many things that can delay treatment and I think we have experienced every one of them! Low red blood cells, low platelets, retinal bleeding, infections and now problems walking due to one of the medicines.

After my last post John had an attack of pneumonia which kept him in the hospital for 2 1/2 weeks in November. He was released right before Thanksgiving. We also had scans around the same time and the tumor in his head was at 13% of its original size. The doctors are unsure about the tumors in his lungs due to the scarring from radiation. On a scan the right lung is full of scar tissue that the scan can not go through so they can not determine if the tumors are completely gone or not.

He has also had a problem with his vision. It started when he was telling me that he was seeing spots and sometimes things were very blurry. During one of our many hospital stays they had an opthamologist come and look at his eyes to try to figure out what was going on. At that time they saw that he had retinal bleeding or hemorrhaging behind his eyes. The reason it was blurry was because they were full of blood. That was a side effect of low platelets. After that the doctors decided that it would be best if they kept his platelets above 30 so his eyes could start healing. They kept checking his progress and then changed his platelet level above 50 because his bleeding was severe. Along with that comes more transfusions and an increased risk of hemorraging in his head. We need to be very careful of him getting hit in his head , playing rough, wrestling with his brother and falling. Any of those things can cause bleeding in his head. Just to give you an idea of our treatment compared to others , the kids can have a platelet count of 20(20,000) before they do a transfusion so John needing to be above 50(50,000) means more transfusions than some kids get. Normal levels are above 140(140,000) and in order to get his chemo treatments he needs to be above 75(75,000) on treatment day. Now that we have been keeping his levels up his vision is improving and the blood is almost all gone. We will not know for a while if it has caused any long term damage.

I still have more so I will post again soon. I hope everyone is doing well.

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.

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.

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!!

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.

www.helpjohnjr.org

JOHNNY HOFFMAN JR. FUNDRAISER  SUNDAY, AUGUST 7 FROM 11AM - 3PM PRESENTED BY CORE CHIROPRACTIC & RPM RACING

Little Johnny is in a brave fight against stage 4 cancer. To learn more about his story, please visit his blog and website. BE SURE TO PRINT THIS EMAIL AND PRESENT IT TO THE RPM CASHIER 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 Julianne@CoreFolsom.com. 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.