Changes

Hey Everyone,

Over the past few weeks there have been a lot of changes in my treatment schedule, as the stem cell transplant was not as effect as it was supposed to be.  There will be no second round of stem cell.  We found out stem cell wasn’t effective, June 13, when I was spitting up blood at home.  I continued to spit up blood for about for hours while admitted at St A Hospital before  an ambulance came and took me to Barnes for further review for two days.

Because of this I had to get a brain MRI and a midsection CT scan.  The brain MRI came back clean…AWESOME!!! But the midsection CT came back showing the kidney with one new spot, the liver with two new spots, and the lungs with new growth to the tumors that are already there.  This was pretty much expected though since I was spitting up blood a few days prior.  Doc has me on a palliative chemo treatment plan to try and knock down some of the new tumor growth.  It doesn’t look like we will be able to knock it out completely in the midsection, according to doc, but what does he know!!! haha.  Once the chemo treatments run their course over the next few weeks, we will be looking in alternative methods of coping/treating cancer. #nevergiveup

Nick Nos

 

Gamma-knife CANCELLED!

I’m sure most of you saw my Facebook post, but for those who have not… The gamma-knife procedure was cancelled!!! This morning the nurses prepped Nick for the procedure and the neurosurgeon placed the helmet on his head. Then he got sent down for an MRI and CT scan. While we were waiting for the results of those scans to help make a plan for the gamma-knife procedure… we got some AMAZING news! The radiation oncologist came rushing in the room and said “I have great news!” He told us the scans showed what they thought was a tumor was shrinking on its own–without any treatment–meaning the spot is not cancer. When they did the brain MRI during the stem cell transplant Nick’s  platelets were very low, about 19,000, and this spot that they found was actually a spontaneous hemorrhage– meaning there was some bleeding in the brain. Platelets are what help clot your blood when there is a bleed, without them you will keep bleeding. The stem cell transplant wiped out Nick’s platelets, but now that he is further out from the transplant, his platelets are rising and are now at 95,000, and his blood his clotting. Nick will have another MRI on June 26 to check and see how the spot is healing up and to make sure he is still on track to have the second stem cell transplant in late August/early September.

We could not be happier with this news! Nick rocks and he is showing this nasty cancer who’s boss. He is a fighter and has got this 110%!!! Thank you to everyone who has been praying and sending Nick positive thoughts! They are working! Please keep them coming! :)

“If God brings you to it, He will bring you though it.”

“Those who move forward with a happy spirit will find that things always work out.” — Gordon B. Hinkley

 

Gamma-knife Surgery

Hi everyone! Sorry we have not posted for quite some time. We wanted to make sure we understood the next steps before telling the world. During the stem cell transplant there was a new tumor found on the left side of Nick’s brain. The doctors got together and decided the best route would be doing gamma-knife surgery. Nick will be having this procedure done tomorrow( Monday, May 20). Gamma-knife surgery is a type of radiation therapy that is used to treat tumors in the brain. Nick will have brain scans done to locate exactly where the tumor is– so the radiation beams are VERY precise. Many low dose radiation beams will pinpoint the tumor from different angles, creating a very high dose of radiation at the tumor site. Gamma-knife surgery is a one-time therapy completed in one day. The process will last all day, but thankfully he will get to go home after the procedure is complete.

Please keep all of those positive thoughts and prayers coming Nick’s way– especially tomorrow! We ALL know Nick’s got this! I will try to post an update Monday evening or Tuesday to let everyone know how WELL the procedure went! Thank you for your continual support!

“Keep your head up. God gives his toughest battles to his strongest soldiers.” — Katie Schubert

“You may have to fight a battle more than once to win it.” — Margaret Thatcher

***Here are a couple sites that may give you a better idea of what gamma-knife is, how it is done, results, ext.***

http://www.barnesjewish.org/neurosciences/gamma-knife-stereotactic-surgery

http://www.mayoclinic.com/health/gamma-knife-radiosurgery/MY00206

The ‘Dog Days’ are almost over…

Hi all! We can finally see a light at the end of this long tunnel. It is day 16 in the hospital and day 10 after transplant. After a long 6 days of having no white blood cells, Nicks white blood cell counts are slowly starting to come up! Meaning he will start to feel better and better each day! Yesterday they came up to 0.2 and today they bumped up to 0.4. We are hoping within the next few days that his counts make bigger jumps!

Everything has been running pretty smoothly. Pray that it stays that way! Pray for no fevers or infections, a good appetite, more energy, and more sleep. Pray the most recent dose of chemo did a heck of a number on the remaining cancer cells. Pray for healthy white blood cells, red blood cells, and platelets to start producing like crazy. Pray for GREAT days a head!

Nick has received so many cards with uplifting messages and many awesome gifts from great friends! Thank you everyone! Also, thank you all for keeping us in your thoughts and prayers! :)

Faith it does not make things easy it makes them possible. — Luke 1:37

Update

Hey all. It is Nicks 10th day in the hospital, but 4th day after the transplant and he is right on schedule. His white blood cells are nearly gone, hematocrit(red blood cells) levels are dropping, and so are his platelets. This was all expected and suppose to happen. He is receiving some blood today to keep the hematocrit level where they want it. The next few days the nurses will keep a close eye on him looking for any signs of infection. Since his white blood cell count is nearly gone, it will be easy for him to catch a virus or get an infection. Tomorrow they will start him on neupogen shots. The shots will speed up the cell making process, replacing the ones that have been wiped out the past ten days. It will take a few days for the shots to kick in. Around May 1st we should start seeing his white blood count rising.

Nick is doing ok… feeling sub-par. The combination of high dose chemo and low red blood cell counts have made him pretty tired. To keep our sanity we have been reading, watching movies, surfing the Internet, roaming the halls, and doing some resting. Nick has received many very nice cards, messages, and a pretty cool Cubs blanket (and Cardinals pillowcase)! :) I hang the cards up in his room. They are a nice reminder of all the wonderful people sending positive thoughts and prayers our way. Keep them coming! Thank you ALL!

“Never forget you have the strength to fight this, even during those times when you might not really feel up to it… BE STRONG.”

Rocked it!

Stem cells are transfused! Nick did great! He received 4 bags, which equaled to 2.7 million stem cells. Now we wait. The doctor said it will take a few hours for the stem cells to find its way to bone marrow — it amazes me that the stem cells know exactly where to go. Over the next few days his counts will continue to trend down. Somewhere around the 9th day, May 2(could be a few days before or a few days after) his counts will start to rise.

Right now Nick is tired. The nurse gave him some good meds to help him through the transplant. :) Now we let the stem cells do their thing. I will keep you all updated as the days go on. Nick is a fighter. He is getting closer and closer to that clean bill of health! Thank you for all the positive thoughts and prayers — we can feel the love! Keep them coming!

<3

Transplant … Here we go!

Hi all! The inpatient process has begun! Nick was admitted around 7pm last night and at 11pm the doctor started him on his first dose of high dose  chemotherapy. The chemotherapy includes etopiside and carboplatin– I will leave it up to you all if you want to research those. He will receive this chemo again tonight and tomorrow night. I keep telling him to just picture the nasty cancer cells melting away. :) Sunday and Monday are his two “rest days” and Tuesday(23rd) is the transplant!!! The transplant includes about an hour of transfusing the stem cells back into his body. We pray that the stem cells returning back into his body find a cozy home ASAP! Then we wait for his counts to start coming up.

Some people have been wondering what Nicks room number is… (and just letting everyone know if you felt like sending anything flowers are not allowed in his room, due to bacteria.)

216 South Kingshighway

Division 6900 North Campus

Schoenburg Building

St Louis, MO 63110 (room 6938)

Attitude

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% how hat happens to me and 90% how I react to it. And so it is with you… We are in charge of our attitudes.”

–Charles R. Swindoll

Collection Process and Beyond

Hello Everyone!!

I no everyone likes Amy’s writing, but today you get me-Nick.   Today ended my four day collection process of gathering stem cells.  I needed 5 million stem cells and collected 5.4 million over the four days.  My nurse was very excited and said I collected the stem cells quicker than any of her other patients.  Collecting these cells was no easy task….Amy and I would leave the house every morning at 7:00 am and get home around 8:30 pm. The reason for the long days were because my blood had to be at certain levels everyday to maintain the stem cell collection, so the nurses would check my blood frequently.  Along the way I needed two blood transfusions and two bags of platelets. This added four to 5 hours to each day.  I call these the DOG DAYS!!

The dog days are over and I get two weeks off to recoup.  I go back on April 18th and will be impatient for three to four weeks.  For the first couple days I will receive chemo.  Then, I will be injected with the stem cells that were recently pulled out of me.  Once those are injected, we sit back and hope like hell they find a nice little home in my body and grow like crazy!!!!!

“Bring it!!!”  -   Tony Horton P90X Creator

Boomshakalaka

Hi all! Today, Nick starts his stem cell journey. He is recieving a dose of cytoxan today, which is chemotherapy, that will lower his blood counts. Tomorrow he will have another central line placed into the left side of his chest. This line will only be used for the stem cell transplant. Tomorrow he will also recieve his first growth factor injection. Nick will continue recieving growth factor injections everyday until his white blood count is high enough to start pheresis(which is a fancy word for extracting stem cells). His blood will be tested everyday to check the white blood cell count. The doctors think that around April 1 his white blood cells will be high enough to start the pheresis. Once that  process is started, they will collect everyday until there are enough stem cells for 2 transplants. This is all done outpaitient. Then, he will have a much needed 7-10 day break from the hospital.

After the break, Nick will be admitted and the transplant begins. Prep time, transplant, and recovery will make for about a month long hospital stay. After the transplant and recovery he will be released for about 3 months and then he will be admitted for transplant number two.

This is the schedule as of now. Plans are changing all the time. We will try our best to keep everyone updated as often as possible throughout the process.

Keep the positive thoughts and prayers coming Nick’s way! Each one is appreciated!

Fight4Nos :)

Hearts Basketball

My family would like to give a big thanks to the Effingham Flaming Hearts for all of their wonderful support this basketball season! Nick has loved being able to attend some practices and sitting courtside at a couple games. All of us have really enjoyed going to games and the ones we were not able to attend, you can bet we were listening to them on the radio and cheering the boys on!  This past Friday, the whole team wore Team Nos t-shirts as warm-ups for their Regional Championship game. Thank you Charlie Schwerman for putting that together. Congratulations to Coach Reed, Coach Schwerman, and the players on a great season! :)