Sunday, May 13, 2012

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: 

Our team name is John Hoffman Jr.

I will post again after treatment.

Sunday, March 18, 2012

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.