Nick / Heath Blood Drive Week of Feb 23rd

Another long time since I have posted.

Nick has since been to Houston Texas to the MD Anderson Cancer Center to see Dr Peter Anderson a renowned Osteosarcoma expert and placed on L-MTP-PE and Gemcitibine for the next nine months.

But new scans showed another tumor at the same site of the lymph node that he had removed in November so on January 19th he had another Thorencotomy to have that removed along with additional lymph nodes. Pathology reports came back that there was still cancer cells in the margin area that was removed.. So good thing they had already planned for radiation to his whole back area to kill any cancer cells - and hopefully not damage his spine or other organs.

I have more new pictures from this last surgery;

More info on upcoming Blood Drive to follow.

Missing events

Since my last entry... wow thing have happened.

Nick went into the hospital on Tuesday, Oct 14, 2008 and had two Thorincotomy's on both sides to remove a tumor on the outside of his left lung, a tumor the size of a golf ball in a lymph node in the center of his diaphram near his spine and a golf ball size tumor that was just under his only incision from the last time he had a tumor removed from one of the small incisions that were used. They also put in another double lumin Portacath for future chemo and blood drawings.

He was sent to ICU for a day and a half, then up to the 8th floor of Children's hospital in Mpls. The doctor's figured he would be there for a good two weeks. He had a drain tube on both sides of his chest to drain off the fluid and blood from surgery. The surgeon was very surprised to see that he was moved to the 8th floor so soon after surgery and also to not be on a ventalator also. He was on oxygen, but really doing very well without, he was constantly taking the air out of his nose so they got him a face mask as his nose was getting so sore. Then he started getting nose bleeds very bad - we are not sure if that was from the oxygen or we think from one of the meds they gave him, so after one day on that stuff - they were no longer going to give it to him, just in case that was the cause. He never had a nose bleed after that - so we would then figure that was the cause.

The drain tubes were taken out way ahead of schedule also - this was a whole lot worst then the last surgery when they removed that tube. First of all the surgeon had a hard time finding the stitch and had to dig around - causing pain - then when he started pulling the tube out - it would get stuck and Nick was by then groaning and tears were rolling down his face. The surgeon then said - That hurt!. With the second one I went and grabbed his hand and same thing couldn't find the stitch and then when he pulled .. it got stuck and this does not stop him from pulling.. and hurts like hell. Nick yelled and just about broke my hand, then cryed for about a half hour in major pain. They had only given him some Valium - last time they gave him a pain pill that took all that pain away. Don't know why this time they didn't.

Nick was then free of those machines and could get up and go for walks which he did right away .. then found out how weak he was and would get light headed easily. But he continued to go for several walks a day. This helped in him being able to get out of the hospital, way before they every planned on him even being ready to get out.

On Sunday after getting home, Nick noticed that the bandage covering his port incision was a little pink from drainage, we removed the bandage and noticed that part of the incision had come open. So we cleaned the area and re-bandaged it, figuring that it would heal anyway. NOT. The next day when he got up he said it was bleeding pink stuff even more, so I said maybe he should think about going over to urgent care and have them look at it. So Me and Amanda went and ran errands and then I was going to take her to the airport for her flight back to Oregon at 2:40. We had no more then got on the road to the airport, when Nick called saying that Dad had taken him to urgent care and Dr Kuku said to get him to the Emergency room at Childrens immediately. The incision had come open completely. So I turned around and went back and got Nick ... took Amanda to the airport - stopped long enough there to give her a hug and back on the road to Children's. Parked and into ER we went, we weren't in there but a few minutes when Dr Nelson comes walking in - he knew we were there because Tim had emailed him that we were on our way. So he saw him before the Emergency staff did. The doctor on call then came and check on him, then said the surgeon Dr Nelson had called would be coming to see him. When the surgeon came in he said that there was no way he could save the port - the hole in Nicks chest you could see the edge of the port and the plastic tube that went up his neck into his artery. Very scary! He said that it had to come out. So he had looked at the surgical schedule and the OR was booked all evening and all the next day and he didn't want this to wait that long - so he said because he was on call that night and had a surgery at 7 pm he would just stay and do Nick right after that. So we then waited for a while until he could be taken up to a room on the 8th floor to wait to go to surgery.

Once taken to the 8th floor, all the nurses had to come and see the hole in Nick's chest - they were all amazed at how clean it was and no infection to be seen or smelt. We had a room we have never had before - the 8160 which is normally a double but they said they weren't putting anyone in with us. This is the room with the daybed .. was very comfortable.
Jazmine got there shortly after we did, in fact when I was down in the garage getting our stuff I ran into her there. Nick was then taken down for Emergency surgery at 8:30, went into the OR at 8:40 and at 9 O'clock the surgeon was in talking to us that everything went well he was doing okay .. that he would have a big hole in his chest that needed to heal from the inside out. That they were taking into recovery, then he would go to his room. He went into recovery at 9:01 and by 9:30 was heading up to his room. After so many popcycles and Ice and water - he was then aloud food - so I ran over to McDonalds for a Fish Sandwich for him and a coffee. Think he also ate a Chicken sandwich also.

The next day - some surgical assistant came into the room (When I was Not there) and with out warning ripped off the bandages (chest hair and all) and then pulled out the packing from his chest. Leah Nicks nurse just stood there agasp in shock- she said she has never seen that guy before and had never seen any one treated like that.

He was not there very long .. and I ran into him in the haul and he said that we needed to learn how to pack the wound area with benedine soaked bandages - then he left. Nick was still in major pain - Leah went and brought in a couple other nurses and they gave him some morphine and a good dose of it to hurry and take away all his pain. She then went and called Dr Muelstedt Nick's surgeon and told him what had just happened .. then came and told us that he was coming up to personally apologized for this and to see the wound.
When he came up he apologized to Nick and said that he could not believe it was he mad, then he looked at the wound - told us that he was pretty sure that there was something wrong with the port from the beginning that is why his body was trying to get rid of it. Said this one had a plastic back and all it would have took is for a needle to have gone through it then all fluids would have gone into his chest area instead of where they were suppose to. GLAD we got that taken out... Chemo in the chest would have been very bad. He then explained that all Nick needed to do was wet a bandage and put that kinda in the hole and then cover it with another bandage. Twice a day - very easy and we would start to see a white stuff in there - and said that is not pus of infection that is the white blood cells doing what they are suppose to be doing healing it from the inside out. Then he said we could go home.
The doctor on the floor and his nurses all thought he would have to stay another day until they had his pain under control and they had taken care of the wound another time, But the surgeon said.. No they can go home. So home we went.

Here are some pictures from the hospital and Halloween.. for some reason it would not let me use some pictures.

A little slow at updating I see

Wow can't believe it's been this long since I last updated.

As of right now, Nick has another nodule that has grown in his left lung and they need to re-check a lymph node in his back that was enlarged at the time of those scans. So he is scheduled for a CT scan on Sept 24th fot a new scan and then a appointment with Dr Nelson.
Then he is scheduled for surgery on October 14th to have these removed, if the lymph is still enlarged they will be removing that also - which then would mean a chest tube in both sides of his chest. Also Dr Nelson continues to say that No added treatment is needed after they are removed.
So we wait and we continue to Pray.

Scans are still Cancer Free

We received the reports back from the specialists, and they say that his PET scans have not shown and change at all. In fact in a email between Dr Nelson and Tim, the doctor said that Nick's tumor has never shown any new growth from the very beginning of treatment - only shown calcification of the tumor (tumor turning to bone). Also his CT scans of his lungs - show No new growths and of the small spots that have been there all a long, they are showing no growth and/or no change. In fact, the PET scan does not show any thing in the lungs or lung area at all.

Today is Nick's 18th Birthday ) YEAH. Woo Hoo. We will be celebrating his birthday up North, He has some friends stopping up at our place and he also found out that one of his friends cabin is just down the road from us. Also, Nick's girlfriends parents and brother will be joining us on Saturday for the rest of the weekend. So it should be lots of fun for all. Jen and Mark and kids are not coming up because of the cost of gas right now, which is okay .. we have all summer for them to join us up north. Besides Jen has to work on Monday.

Then the next event coming up is on June 3rd, when Nick graduates from High School, this year has been full of events that just a short time ago - we never thought would happen. But with God's help, Nick is surviving and living. We will be having a Grad Party on June 21st to celebrate his Graduation but also His Life - This is also Jen's 25th Birthday .... another reason to celebrate life.
I was also thinking that this date is a very fitting day, because Nick was baptised on Jen's birth date way back in 1990, so what better day to celebrate his Life - then on his baptismal day. WOW huh. I will update then with lots of pictures.

OOPS .. Didnt know it had been so long.

Sorry - just checked not realizing how long it has been since the last time I wrote on here.

Things have been going very good, Nick has been doing really good. He has had bouts of colds and sinus stuff - but then hasn't everyone this time of year. He has been in physical therapy twice a week at Nova Care, and boy have we seen a difference. His left calf muscle is now the same size as his right calf which is large and his thigh muscle is hard and big like the other leg also. We have also notice - that his limp isn't as pronounced as it was before, and I think his pain level has decreased also.

He just went to Prom with his girl friend Jazmine, they had a great time - He danced all evening and of course was sore the next day. Just part of life.

Nick is scheduled to go into Children's on May 16Th for new scans and his next appointment with Dr Nelson. So looking forward to this with continued ... Lots of Major Prayers as we are not out of the woods.

We have seen two people - now relapse and this is very scary.

Heath is back on Chemo with tumors in the plural sac around his lung, he goes in next week for more scans now to see if the new protocol is getting rid of these tumors.

Then there is Yo Yo - who is 3 yrs old and had gone out to Boston for Proton last summer, Her tumor had been in her chest. Well she just recently relapsed.. and they took her in and removed several limp nods that they had noted as enlarged besides a large tumor again in her chest. They removed the nods - not the tumor. The nods just came back as not being cancer .. YEAH.... so yesterday they went in and removed the tumor or as much of it as the doctor could - because some had gone into a vertebra.... she is now in ICU at Children's and then will be moved to 8Th floor when able to. Then she will be going back on Chemo and I understand Radiation also.

So lots of prayers are being sent to both of these Great People and their Families.

Here is a couple Pictures of Nick before Prom, and Miranda and Lil Nick of course.

Pictures from Hospital