History

Tuesday, July 7, 2009 2:21 PM CDT

We went to Sloan in June. No scans just labs, pft, and doctors. He did have a large amount of blood in his urine. So when we got home he had to have more labs and a renal ultrasound. The doc said his kidneys look fine other than the left one being half the size of the right one (because of the radiation it never grew). The kidneys are functioning fine. So we will return to Sloan in a year.

Chris' Uncle Mike was dx in April with a brain tumor. He had to have surgery to debulk the tumor. They were only able to remove 2/3 of it. He is now doing radiation every day for 6 weeks and oral chemo. He is 35 years old with a 12 year old boy and a 6 year old girl. Prayers are very much appreciated.

Chris is playing baseball this summer. We had to buy him a special shirt that protects his heart and his kidneys. He loves playing ball. He is also a cub scout. We just finished our day camp last week. He had a blast.

He and Brandon will be staying at grandmas in New Mexico for 2 weeks in August. I will take advantage of this and get lots of my house work done.

I started working at the school in the spring as a teachers aid. I really enjoy it. I love working with the special needs kids. I get to work at the grade school and the high school. Don is driving over the road so he is gone alot. He will be looking for a job that wont require him to be away so much.

Thanks so much for checking in on Chris. God Bless.

Tuesday, February 3, 2009 11:37 PM CST

Tuesday, June 17, 2008 5:03 PM CDT

Chris is doing great! He is enjoying the summer. He and Brandon are playing t-ball in Perryville Mo again. They love playing ball. Don is going to truck driving school. He will get his cdl tomorrow. He will probably start his new job in about a week. I hope he likes driving a semi. He will be gone a lot and I am not real happy about that. I will miss him as will the kids.

Amanda is still living in Dexter Mo. She likes it there and will be able to graduate in December. She wants to go to college to become a radiology tech. She has a part time job at Wendy's.

Aaron is learning to play the guitar. He wants a bass but I wanted him to start with an acoustic. He also plays the trombone. He is playing baseball too.

Chris and I will be at Sloan on the 11th of August. We scheduled the same day as Amelias appointment. Amelia and Chris were getting 3f8 at the same time. Her mom and I hit it off real well. So we are hoping to spend some time together. We haven't seen each other in a long time. I am excited about seeing both of them.

Thanks for checking in on Chris. God Bless!!

Tuesday, May 6, 2008 4:43 PM CDT

Now I know you all are not use to me updating more than once a year. However, I feel that I need to ask for some prayer request. There is a little girl named Alexis that was just diagnosed in April with stage 4 neuroblastoma. Her dad is a friend of my brother. Here is a link to her website.... Alexis Jenkins
Please stop by and sign her guestbook and let her family know that you are praying for them.

Also pray for Emily to be free of pain as she has been having a problem with her bowels. She is such a sweet little lady, it just breaks my heart to know that she is in any kind of pain. Here is a link to her website......
Emily
Chris is doing great and is enjoying the nice weather.

God Bless and thank you for checking in on Chris.

Wednesday, March 12, 2008 11:56 AM CDT

Wow! I can't believe it's been nearly a year since my last update. Chris has been doing great. He and Brandon enjoyed playing t-ball last summer. They are now in kindergarten and doing well.

Chris had been suffering from migraines for some time now and no one could figure out what was causing them. We decided to take him to a pediatric neurologist to see if he could tell us what was causing these headaches. The doctor thought that Chris might have epilepsy. So we did an mri, ct, and an eeg which were all negative. So we still don't have a definite answer, however the doctor said he still thinks it is epilepsy or migraines. We have decided at this point not to medicate him as the headaches rarely interfere with his daily life!

We also had scans done in Jan. which were clear! As of now we do not have scans anymore just blood and urine test every 6 months! He will still see 2 doctors at Sloan every 6 months, Dr. Kushner and Dr. Sklar for late effects.

I have put some new pics on the picture page so check it out!

Thanks for checking in on Chris!

Lois

Thursday, March 29, 2007 8:31 AM CDT

Just a quick update!!
Chris is doing great! He will be having scans done at Sloan Kettering at the end of April. We are going to attempt to do the mibg scan without anesthesia. I hope he will be able to sit still for an hour and a half. I have to stay at home this time because of my job, so he will be going with his dad. Chris is now 4 years out from the day he was diagnosed. He will be celebrating his 6th birthday on the 16th of April.

Thanks for checking in on Chris.

Lois Schwier

Sunday, January 28, 2007 11:53 PM CST

Christopher is doing great. He still has headaches similar to a migraine. We don't know what causes these headaches. So for now we just keep track of when they happen how long they last and any other symptoms. He always vomits with these headaches then he goes to sleep for about 2 hours, wakes up an he is fine. With the last two headaches he would say his eyes hurt, then he would start with the vomiting. We are going to call the doctor on Monday to see if maybe he should have an mri.

We found out last week that my husbands pay check and benefits are finally being reinstated and back dated to April of last year when it was terminated. This has been such a hassle for everyone involved. His insurance and pay were wrongfully terminated. My husband was an employee for the State of IL. he was injured at work in Oct. 2003 and is unable to return to his job and it has been a fight ever since. The most important issue is the insurance. Most of you in the cancer world know that we can't have a lapse in insurance. Anyway it has been a rough year! We won our law suit against the state back in August. Then a week later the state fired my husband so that they would not have to pay him or offer him any benefits. So you can see that this has been a huge mess.

I am still working at a plant in MO that makes airbags and steering wheels for new production cars. I am scared that if I quit now then the state will again stop paying my husband and we will again have no insurance.

Even though we have had a rough time, I am constantly reminded of how good we really have it! Chris has defied the odds, he has little if any side effects from his treatments, and he is an average, happy, busy little 5 year old boy! Life is Good!

God Bless!

Lois

Wednesday, November 15, 2006 7:11 AM CST

Christopher continues to do great! He had a ct scan and labs done October. He continues to be free of disease!!! He will have a 24 hour urine collection next week. His catacholemines have never been elevated (not even when he was diagnosed) so I am not to worried about this test.

I am still working at the factory. It is hard work but it pays well. The best part is that the benefits are excellent, the insurance is free for your entire family, this covers health, dental, and vision. The health care is Blue Cross/Blue Shield and I think it is an 80/20 plan. Which isn't bad when you consider that you don't have to pay any premiums.

My mother has been making purses out of old jeans and selling them to raise money for the NB foundation so far she has raised almost $1000.00. Thanks MOM. Her next item will be cell phone cases. I have added a picture of one of the purses that she made. Check it out!

Please pray for all our little friends who are still fighting this horrible monster, and for the families of the children who have gained thier wings.

Thanks, Lois

Friday, August 25, 2006 11:04 PM CDT

Chris is doing great. He and Brandon were not quite ready to start kindergarten this year so they are in thier 3rd year of pre k. They were not able to attend the same pre k at the grade school. So they are going to a pre k at a church here in Chester.

Chris is due to go back to New York for scans in October.
If our insurance is not straightened out by then, then we will just do scans locally. Sloan Kettering has been very
patient with us about our bill. When we went there in April I was under the impression that I had insurance. We didn't find out that our insurance was dropped until June 2. It was dropped in retro back to April 1st so his scans have not been paid for.

We found out last week that we won our law suit against the state. Our insurance should be reinstated within the next 30 days. That is of course if the state does not appeal the decision. If they decided to appeal then we are back to square one. It can take months if there is an appeal. Then my husband will have no income or insurace untill it is all settled. If there is no appeal then we will be getting back pay from May through August. The state will have to issue a check within the next 30 days or they will have to pay interest to us on the amount owed. Our insurance should be reinstated in retro back to April 1st. This is going to be such a nightmare for billing.

I just started a new job at an automotive parts plant. My part time job at the hospital was not providing enough income to support a family of 6. I am making about double what I made at the hospital plus I am working about 50 hours a week. Hopefully my husbands pay will get straightend out soon and I won't have to work. I miss my family. I really enjoy being able to stay home with my children.

Anyway thanks for checking in on Chris.

Thursday, July 13, 2006 3:23 PM CDT

Wow, it has been a while since I have updated. We are all doing well. We have had a rather laid back summer so far.

I found out last month that our insurance was dropped in retro back to April 1st. As you can imagine this was a big shock. We had paid our premiums up through June and then received notice that our insurance was cancelled. This means that Chris' last trip to New York was not covered. I will spare you the details. Since my insurance was dropped in retro it has made it difficult to get my employer to give me insurance and premiums are double what they were with my husbands employer. My husband has been off work since 10/03 due to a work related injury. His doctor has refused to release him back to work. We are currently in a law suit against his employer (the state of IL). He also hasn't been paid since April. So as you can imagine things have been a little tight.

Please pray for Matthew Pearl

Thanks for checking in on Chris!

Friday, May 19, 2006 3:28 PM CDT

Chris' scans were clear! He continues to have no evidence of disease! We were only in NY for a few days but while we were there we were treated to dinner at a fine restaurant, then we got to see the broadway musical Tarzan and Jane. Chris absolutely loved the show, as did I.

Chris will once again be walking the survivor lap in the Relay For Life only this year he will be walking with his grandma Mary. She will be starting chemo and radiation on Monday for colon cancer.

We are currently trying to find out what is going on with Chris' heart I think it is cardiomyopathy. However the cardiologist have not been able to give me an exact diagnosis. She just told us that he has a weakening of the lower muscles of the heart. Christopher did recieve doxyrubison which can cause cardiomyopathy. He also recieved radiation to that area of the heart. So we are not sure if it was chemo or radiation that caused the damage.

His only symptoms are wearing out very easy and being unable to catch his breath when he is playing hard.

The kids will be on summer break starting this Wednesday. They are all looking forward to no school, sleeping in, pool parties etc.

God Bless, and thanks for checking in on Chris!

Saturday, April 15, 2006 7:59 PM CDT

Tomorrow will be the boys 5th b-day. Yes the boys b-day is on Easter this year. Hopefully we will have nice weather for them to hunt all the Easter Eggs. I am sure since it is their b-day that they will get lots of cool things from the Easter Bunny!

Chris' ct scan was clear! However he is still fighting strep throat. It has been almost 2 months. We have him on some really strong antibiotics so hopefully he will have it all cleared up by Friday or we will have to reschedule his scans, cancel flights etc... As long as his strep screen is negative then we can go to NY as planned. I suspect that after we come back from Sloan that he and Brandon will both have a tonsilectomy.

I will try to put up some new pics of the kids tomorrow.

Thanks for checking in on Chris.

Lois

Sunday, February 19, 2006 12:12 AM CST

Just a quick update! Chris is doing well. He has been sick all week with strep. Other than that things are good. We will be heading back to New York for scans around the end of April.

The picture above is of Chris with his new bed and his new quilt made by the Quilting Angels.

We are going to Aarons Blue and Gold banquet today. He will be an official Boy Scout now. He has been a Cub Scout now for 5 years and has worked very hard to become a Boy Scout. We are all very proud of him.

I have a few prayer request. Please pray for Kendall he is a twin and also has Neuroblastoma and has recently relapsed. Also Emily a twin currently recieving treatment for relapse Neuroblastoma.

Monday, January 9, 2006 8:23 AM CST

I have a prayer request for a little girl by the name of Emily Adamson. Her last scans revealed something suspicious at the site of her original tumor. Please pray that this is benign or scar tissue or nothing at all. Also pray for her family she has a twin sister (Mary Grace), and her mom and dad (David and Diane).

Thanks, Lois

Wednesday, November 2, 2005 3:05 PM CST

Chris' scans still show no evidence of disease! We will not have to go to New York now for 6 months. While we were in New York we got to meet Jay Leno at a book signing event. We got an autographed copy of his book, How To Be The Funniest Kid In The World (Or Just Your Class). Chris slept through the whole thing but I was able to enjoy seeing Jay Leno.

Chris continues to amaze us all. He keeps up with Brandon and all the other children in his pre-k class. We thought that because of all the chemo and radiation that he would be delayed. However he has proven us wrong!

Keep praying for a cure. God Bless!

Monday, October 10, 2005 9:34 AM CDT

Christopher had a ct scan of his abdomen last week. The doctor says it looks great. However he was concerned after listening to Chris' heart. He said there was a scratch before each beat. So he had a cardiologist listen to it. The cardiologist ordered an ekg. Anyway it turns out that Chris has a mitral valve prolapse. He will have to see a cardiologist in 3 months to have it rechecked. This condition is not life threatening and usually does not require any medication.

Chris and I will be going to New York for his mibg scan on Oct. 26th. We will be there for 3 days and then we are coming back home. It's nice that we don't have to be away for weeks!

Amanda has got her permit and is learning how to drive. Now I know why my mother would not ride in the car with me when I was learning how to drive. Amanda's not a bad driver, I am just a bad passenger.

Aaron is running on the school cross country team and has done very well for his first year. He is also learning how to play the Trombone in band. He is in the school choir, and some how manages to find time to go to Boy Scouts as well. Even with all the extracarricular activities he is still getting good grades. I am very proud of him.

I have a prayer request, a little boy named Tony Mcdowell who also has Neuroblastoma needs prayers he has relapsed and the future looks very grim he has wide spread disease. Tony was in treatment when Chris was diagnosed. He was n.e.d for 2 years. Please keep him and his family in prayer.

Thanks, Lois

Monday, August 22, 2005 10:30 AM CDT

We have been very busy this summer. It's hard to believe it's time for the kids to go back to school already. Amanda and Aaron started school on Friday. Aaron is in the 5th grade and Amanda is a sophmore. She is taking drivers ed and is excited about that. We haven't decided whether we should give her our Saturn or buy her a used car of her own. I like my Saturn especially now with gas prices being so high. So it will be a tough decision.

This last month we have been extremely busy! After we returned from the Neuroblastoma Conference we started getting ready for the Duck Dash. The Duck Dash is held at Six Flags Hurricane Harbor. People were able to adopt ducks which were then released into the Lazy River and raced to the finish line. There were lots of cool prizes that were donated by various companies in the St. Louis area. The National Childrens Cancer Society adopted out 7,400 ducks and raised over $41,000 for their organization. Chris was the honorary Duck release person this year. He and Daffy got to pull the strings and release all those ducks. He had so much fun watching the ducks race.

After the Duck Dash we were able to rest for a few days. Then we were off to Indiana. We took the kids to Holiday World and Splashin Safari. It's a really neat amusement park. There is something there for everyone. They also have free sunscreen and soft drinks. It was very crowded, long lines, and well let's just say we left a little early.

The next weekend we went to Branson with the The Dream Factory. They took a few families from local hospitals to Branson for 3 days and 2 nights. We saw some shows hung out at the pool and went to Silver Dollar City. Everyone enjoyed the trip.

As you can imagine after all this we were all getting a little wore out. However there was one more thing we got to do before school started. We got to go to the Maka-A-Wish carnival in St Louis. The kids really enjoyed all the cool attractions. It was a good way to end our busy summer.

As far as Chris' health is concerned he is doing great! We will be going back to New York around the end of September for scans.

Thanks for checking in.

Lois

Thursday, July 21, 2005 0:49 AM CDT

Chris' scans are clear. He still has no evidence of disease. He continues to do very well. He finished his first three rounds of immunizations two months ago. He will have lab work done on Friday to check his vaccine response. Then hopefully next week we can start his hepatitis vaccines.

Last weekend we attended the Neuroblastoma conference in Chicago. It was very helpful. There was some information on late term effects. It helped me in the decission to take Chris to the late effects clinic at St Louis Childrens Hospital. I have been thinking about it for some time now.

It was also nice to meet up with the Messina family. I haven't seen them in a long time. We also made some new friends. The boys had fun playing with a set of twin girls. I met another mom who's son was also stage 3 high risk. His name is Matthew and he was diagnosed a few months before Chris and is still N.E.D. There were also some long term survivors there. As a parent I think it is very important for us to see that there is hope.

Thanks for checking in on Chris. God Bless!

Monday, June 27, 2005 0:06 AM CDT

We are getting ready for scans again. We leave for New York on Wednesday. Chris will have an injection on Thursday. Then an mibg scan and bone marrow aspirations done on Friday. If all goes well we should be back home on Saturday.

We have all been very busy. Aaron has been playing baseball. Amanda has been babysitting for my brother. Brandon and Chris have just been enjoying their summer. They like to go to there big brothers ball games and chant batter batter SWING when the opposing team is up to bat. We all get a good laugh out of it.

I decided to further my education this summer so I signed up for an online course. I am taking medical terminology. I figured since I have worked at our local hospital for 6 years that it would be easy. Boy was I wrong! It's not a hard class just alot of time involved and lots of memorization. I wish I had taken this course a long time ago it would have helped when Chris got sick.

Don has taken a part time job with our local news paper. He has been on work comp. since October of 2003. He had surgery in January of 2004 to repair a broken wrist however his knee injury was never addressed. Sometime last summer he was forced to go back to work which only lasted a few days because his knee that was never fixed was reinjured. So this October he will go to court and will be put on permanent disability. He has been going crazy just sitting at home so he decided to take this job at the paper and he seems to enjoy working there.

I also want to say Congratulations to 2 wonderful kids, my nephew Matt Woolworth, and a young lady I met in New York at the RMH Emily Corwin. Both are 2005 high school graduates.

I will try to update as soon as I get the results of Chris' scans.

Thanks for checking in on us.

Lois Schwier

Thursday, May 19, 2005 6:01 PM CDT

Sorry it has been so long since my last update. I wanted to get some of Chris' test results before updating his website. The good news is that Chris still has no evidence of disease. Thank God!

Chris had scans done at the end of March and those were clean. However Dr. Kushner wanted a 24 hour urine collection done. We tried to do this while he was in New York but were not successful. So we decided to do it when we got home.

We turned in his specimen and waited almost 3 weeks to get the results. We were told that his vma was 60.8 and that his creatnin was also 60.8. Dr. OcConner was sure that this was a mistake especially since his scans showed nothing. So we retested and much to our relief his vma was normal.

I tried not to worry but I have to admit I was very scared. It's that ever familiar roller coaster ride.

Chris is going to walk the survivor walk at the Relay For Life in Sparta. He deserves it!

God Bless, and Thanks for checking in on us.

Lois

Sunday, April 17, 2005 4:53 PM CDT

Yesterday was Christopher and Brandons 4th birthday. We did not have a party because the boys were both feeling a little sick. We will have a party for them next weekend.

We thank the Lord for each and everyday that he has given us with our little guys. It is truly a blessing. Watching them grow and experiment and learn new things. Chris loves to chase Brandon around with bugs, Brandon screams and hollars and Chris just laughs and laughs.

We had an audiology appointment for Chris last week and so far they said he has no hearing loss. This would be quite supprising since almost all the patients that were on the same protocol as him have some hearing loss. The first time we did a hearing test he showed possibly some slight hearing loss in the higher tones. However this time shows no loss at all. This is good news.

The weather has been beautiful here. I have been doing some gardening and other yard work. The boys enjoy riding their new bikes that they got for their b-day. Aaron is playing little league and Amanda is running for the high school track team. She placed in the top 5 in the 100, and 300 meter hurdles out of 11 schools. Not too bad for a freshman.

Thanks for checking in.

Friday,April 1, 2005

Our trip to NY was ok. We had a few minor glitches but nothing major. My flight was delayed by about an hour due to bad weather in NY. Just before we boarded the plane I had a phone call from Dianne (our social worker from Sloan). She told me there were no rooms available at the RMH and that they were having trouble booking me a hotel room. I was a little worried about going to NY and not having a place to stay once I arrived. Dianne assured me that it would be ok. When I landed in NY I called Dianne to find out where I was going to be staying. She informed me that I would be staying at a hotel on 34th between 3rd and Lexington. That's about 30 blocks from the hospital. So we hopped in a cab and went to the hotel. On the way to the hotel it started snowing! The suite that we were in was wonderful it had a full kitchen and 2 king sized beds.

The next day Chris didn't have to be at the hospital until 2:30. So I decided to walk. It was A little chilly but still a nice walk.

Chris needed an IV for his injection. So we headed to the IV room where it took 3 nurses 4 tries to get an IV started. Needless to say Chris was not happy. After he got his injection we walked back to the hotel.

The next day Chris was scheduled for sedation so I thought it would be best to take a cab. We saw the doctor and he said Chris' ct scan looked good. His left kidney is about half the size of his right but still functioning. Then we went down stairs for sedation and mibg scan. Chris did great and we should have the results in soon.

We came home on Sat. and had family over for dinner and egg coloring. The kids had so much fun coloring their easter eggs.

We had a wonderful Easter!

This morning when I got up I felt that I needed to check on our little friend Joey Messina. We met Joey and his mom Holly on one of our first trips to NY. Joey was one cycle ahead of Chris with the antibodies. Joey relapsed for the 2nd time during his 4th cycle. He went to chop to do the mibg therapy in hopes that this would be the cure for him. This is what his web page read this morning-

Hello. This is Mike, Josephs brother. I walked home today from my bus stop and my uncle was at my house. He took me to Bainbridges Restaurant in Chelmsford. At the restaurant, my mom called and we had to leave our meals and go to the hospital. I drove 1 hour into the hospital and went to the 6th floor, the PICU (Pediatric Intensive Care Unit). I pushed open the glass doors to Joseph's room and found little Joseph lying on a bed with a very lound pumping noise (the respirator). Everybody was very scared. Me and my family decided that it would be best to turn everything off. There was nothing else the doctors could do. It was very hard. I saw his stomach going up and down slower. We watched Joseph pass away at 7:28 tonight and my mom held him in her hands. We got a handprint of him to put in a special box forever. I think it was way too early for him to go away. Everybody was acting all sad everywhere we go. We went home.. just the four of us. I feel okay now. I might not be in school for a little bit. We will post the funeral stuff soon. See you later.

Please keep his family in your prayers.

Saturday, March 5, 2005 5:00 PM CST

Chris is doing great! He will be having scans toward the end of this month. He had bone marrows done in Feb. and they were negative! Just like with his last round of antibodies there was no pain. We will find out if he has a hama some time next week. I have learned not to get my hopes up just because he didn't have any pain.

Chris has a little friend who is in need of prayer his name is Joseph and he too is battling this horrible disease. We met Joseph and his family in New York. They are from Boston. He has a wonderful family. We stay in touch via the internet. He also has a web site with Caringbridge http://www2.caringbridge.org/ma/joeym/
Please visit his web site and give his family some encouragement and support.

I will try to update again when we get Chris' hama results!

Thanks for checking in on Chris!

Thursday, January 27, 2005 1:34 PM CST

I did not realize it has been over a month since I have updated this web page. I appologize to those of you who have been checking for updates. It is true that the better Chris gets the less I feel the need to update.

Unfortunatly Chris did not get the reaction that we were hoping for (hama for those of you who are familiar with antibodies). So we will once again be heading for New York next week. He will have test done on Friday and will start antibodies on Monday. Our hope is that he will get a hama this time.

Chris is still going to pre-k and is learning the routine. It is hard for him to adjust when he comes home from his treatments in New York. It seems like as soon as he gets the routine down then we have to leave for New York and everything starts all over.

We have also started the process of getting him reimmunized. His high dose chemo wiped out all his immunizations so he has to have them all over again. He has to get shots every 2 months. It's just the next step in this process of getting Chris healthy and keeping him that way!

As for my 3 other children they are all doing well. They have all been unusually ill this winter with colds, pnuemonia, sinus infections and the flu. I think they are over all that nasty stuff thank god!

I will try to update this web page as soon as I get back from New York.

God Bless!
Lois

Friday,December 24,2004

Sunday, November 21, 2004 11:59 AM CST

Chris and I will be in New York on the 28th. We are excited that we are able to home for Thanksgiving and for Christmas this year. Last year we spent Christmas in New York.

Chris is doing great he enjoys going to pre-k with his brother. He loves his teachers and talks about all his friends that he has made. He also tells me that Brandon has a girlfriend. He also likes riding his home on the bus with his big brother Aaron.

Amanda is playing basketball now. I will have to miss her first game since I will be in New York. We just celebrated her 15th birthday. She received a little bit of money and decided to buy a toy for the Marine Corps Toys for Tots drive. This was the first time she had done this. After she placed the toy in the box she looked at me and said WOW that felt good. She is finally starting to understand that it feels better to give than to receive.

Aaron is doing well. He and his dad went to the circus with the boy scouts. They all had a blast. He is struggling with school. I feel slightly responsible since his grades always drop when I am gone.

We hope that Chris will hama this time. Then we won't have to make theese long trips to New York.

Have a wonderful Thanksgiving!

Lois

Sunday, October 10, 2004 0:40 AM CDT

Chris and I are finally back from New York. We were supposed to come home on Saturday. However on Friday while I was packing Chris felt a little warm so I took his temperature and it was 102. I took him back to the hospital and he was admitted and started on antibiotics. He was positive for a line infection. The same one he had before we came out to New York. We were finally able to come home on Tuesday. On Wednesday Chris had his mediport removed.

His scans were all clear still showing no disease. We were concerned for a few days though because the doctors here in St Louis said that his mibg scan showed a spot on the right adrenal gland that is consistent with Neuroblastoma. His ct scan showed spots in his right lung. The doctors in New York said that the spot on his right adrenal gland is normal because there is always uptake in the remaining adrenal gland. The spots in his lung could have been from the line infection or his lung may have just collapsed with the anesthesia.

He was able to go back to school on Thursday. We are both happy to be home.

Lois

Tuesday, September 7, 2004 3:04 PM CDT

Chris is doing well despite the fact that he has been fighting another nasty port infection. He was in the hospital for a few days. Then was able to come home on I.V. antibiotics. He was not able to start pre-k with Brandon because his port was accessed. Hopefully he will be able to start next week.

We were able to go to Camp Sunrise this past weekend. We all had a blast. However it will be a while before Chris will get in a boat. He and I decided to take a ride in a funyak which is a smaller version of a cayak. I didn't even make it 10 feet from the shore before I flipped it over. He was mad at me all day.

Chris is getting scans all week. So lets pray that they come out clean. We will be leaving for NY on 9-19-04.

On a sad note when Chris was in the hospital I was informed that his friend Hannah had passed away back in August. Please pray for family. Hannah was 7 years old and suffered from rhabdomyasarcoma. She had to be the sweetest 7 year old I know. She had a big heart and was always thinking of others. I know that she is in heaven and free of pain now.

Lois

Wednesday, August 18, 2004 10:09 PM CDT

Sorry it has taken me so long to update.

Don and Chris went to NY for an MIBG scan and bone marrows. His bone marrow aspirations were done on Thursday and his MIBG scan was scheduled for Friday. Normally he is given an oral sedation for this scan. But for some unknown reason he was only given Benadryl and Ativan (which he is allergic to) to sedate him. So needless to say Chris did not fall asleep as planned and therefore could not have the scan done. He will now have the scan done locally.

He still goes to the local hospital for pentamadine(sp) infusions every 2 weeks. We will continue our trips to NY for antibodies every 8 weeks or until he gets a HAMA.

Amanda will be starting high school on Friday and Aaron will be in the 4th grade. Chris & Brandon will be starting pre-k 9-6-04. They are all anxious to get back to school.
Even the boys are excited about going to school.

We did get to take a road trip to see my mother. Aaron stayed with her in New Mexico and Amanda stayed with my brother in Texas for 2 weeks. It was nice to see my mom, Paul (my step dad), and my brother Greg.

We are all saddened by the passing of Alexandra Scott. She was a brave little girl. We will pray for her family.

Thanks, Lois Schwier

Tuesday, June 29, 2004 5:08 PM CDT

Well we are home now. We had a blast! Thanks Make-A-Wish. Midevil Times was really neet. Disneyland California Adventures was awesome. Universal studios was great (this is where we got to meet Shrek and see his movie in 4d) Legoland was cool. Chris unfortunaly did not make it to Catalina because he spiked a temp. The rest of the kids and Don all went and had a good time. The train ride home was fun for the kids.

Check out some of the pics from our trip in the photo album. My sister and her family were able to come and spend the day with us at Disneyland. The kids enjoyed seeing their cousins.

We are leaving for New York in a week I will try to post new photos again before I leave and then again when I get home.

Thanks

Friday, June 18, 2004 2:16 PM CDT

Well our bags are packed and we are ready for our make a wish trip. The kids are very excited. We are leaving bright and early Sunday morning. We are going to Medievil Times, Disneyland California Adventure Theme Park, Universal Studios Hollywood, Legoland, Catalina Island, and then we will be taking a train home in a deluxe sleeper car. We are doing all of this in a 6 day time frame. Chris and I will then be leaving for NY on the 7th of July for 2 1/2 weeks. I will try to post new pictures before we leave so everyone can see us on our trip.

Monday, May 31, 2004 10:10 AM CDT

Chris' little friend Hannah is in need of prayer. She has refractory rhabdomyosarcoma. She was doing well until about a month ago when she started having pain in her abdomen. Last week the doctor told her parents that her tumor is growing again and has already metastisized. She has been given 2 months to live. Pleas pray for Hannah she is 7 years old and very sweet. She is unselfish and always thinks of others before herself.

We are all doing good. Don and I bought a used camper yesterday so we could take the kids camping this summer. It's a small pop-up camper. The kids love it. We will probably go camping next weekend.

We will be leaving on June 20th for our make-a-wish trip. We are going to Disneyland California Adventure theme park, Midevil Times, Legoland, and Catalina Island. Then we will be taking the train home in a suite.

Saturday, May 8, 2004 1:19 PM CDT

Chris' scan came back good. No evidence of disease. He is doing well with his treatments here. He sleeps all day and is up all night. He is not eating as well as I would like him. So when we go home we will have to fatten him up again.
We wanted to visit with our friends the Messina family while we were here in New York. Unfortunatley we were not able to. Hopefully we will be able to visit with them next time we are here. Holy said that Joseph is tolerating his new chemo well. We will try to see them at the Neuroblastoma conference in Chicago in July.
We have one week of treatments left for this round. We will be going home on the 15th. Then we will return in July for our 6th round of antibodies.
We are all looking forward to our make-a-wish trip in June. We will be flying to CA. We will visit Disneyland, Midevil Times restraunt, Legoland and a few other places. Then we are taking Amtrak home in a family suite. The kids will have a blast and I will be able to see my sister and my nieces and nephews. I can't wait.

Wednesday, April 28, 2004 3:58 PM CDT

We are back in New York again. Chris is not happy to be here. He started crying as soon as we got in the cab to go to the R.M.H. He had a bone marrow aspiration done today and an injection for an M.I.B.G. scan that he will be having tomorrow. We should have his results in sometime next week. We don't expect any bad news but there will always be that fear.

Friday, March 12, 2004 5:58 PM CST

Everyone is doing well. Amanda has another sinus infection and had a ct scan of her sinus today. Aaron is enjoying the warmer weather and playing outside every day. Brandon is enjoying the weather as well. Dons' wrist is healing. He is able to drive again.

I have gone back to work since we are able to be home for 7 weeks. I am only working per diem but it is better than not at all.

Christopher has been a local star for the last few days. On Tuesday he was featured in a story on kfvs12 about overcoming childhood cancer. Then he was featured in The County Journal with a full page article.

Amanda is going to sing a solo in a state competition for her school choir.

Please pray for Joseph Messina and his family they are from Boston. Joseph has relapsed for the 2nd time and this time it is in his bone marrow. His parents aren't sure which treatment to put Joseph on now. He relapsed after his 4th round of 3f8. please visit his web site.
http://www.caringbridge.org/ma/joeym/

Friday, February 6, 2004 12:39 AM CST

After a brief stay in the hospital while we were in NY for a fever. We are now home for 3 weeks. Chris is now considered to be n.e.d (no evidence of disease). I have added some new pictures to his picture page so please check it out.

After his next round of 3f8 Chris' treatments at Sloan will span out to every 8 weeks. I will be able to work a little in between treatments and life will get back to being somewhat normal (whatever normal is).

Don will be having surgery soon on his wrist and will be off work for a few weeks. Amanda has started playing volleyball, Aaron is almost done with basketball. Brandon and Chris are very busy 2 year olds. We are trying to work with Chris on potty training (wish me luck!)

Don't forget to chek out Chris' website at http://www.christopherschwier.com

Monday, January 12, 2004 11:58 AM CST

When we returned from New York Chris started running a temp and was admitted to Cardinal Glennon. He had his first (and hopefully last) port infection. He was in the hospital for a week on antibiotics. He was able to come home on I.V. antibiotics. Now we are preparing for our next trip to New York. We will be leaving on the 18th. Everyone else is doing well. Amanda's last basketball game of the season is tonight. And Aaron is playing in a jr. basketball league on Saturdays. He also raced in the pine wood derby this weekend and finished in the top 16 out of about65 boys. Brandon is busy busy busy with all the toys he got for Christmas. Don is still off from work on injury.

Thanks for visiting Chris' website!
And as always thank you for all the prayers and support.

Wednesday, December 10, 2003 8:35 PM CST

Today one of Chris' friends passed away. His name was Mark and he was diagnosed with neuroblastoma back in January. He had just gone through his high dose chemo and a stem cell transplant however his body just wasn't strong enough to handle it. This morning he suffered a stroke and passed away within a few hours. Mark was a very happy easy going 2 year old and he will be missed tremendously. He is an angel now and free from all the pain and suffering. Please pray for his family.
Chris is doing well with radiation therapy he will be done on Friday and we will be leaving for New York on Saturday.

Friday, November 28, 2003 1:14 PM CST

Chris is doing well. He is getting his hair back slowly. We will be spending Christmas in New York. I will try to have the rest of the kids and my husband come with Chris and I so we can spend Christmas together.

Here are some web pages that give a good description of the clinical trial that Chris is receiving.
http://www.mskcc.org/mskcc/html/3215.cfm
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=03-077

He will be in St. Louis for 8 days for radiation therapy. He will get it twice a day for a total of 16 treatments. As soon as he is done with his treatments in St. Louis he will leave for New York for his 2nd round of the 3f8. We are schedule to start the 3f8 on the 15th of Dec.

Thanks to all who have signed his guest book. Please continue to pray for Chris as his battle is far from over.

Saturday, November 1, 2003 10:24 AM CST

The doctor decided that the spot in Chris' chest not worth going after. So for now he will be starting the 3f8 clinical trial in New York. We will be in New York for 2 weeks and home for 3 weeks. For 4 cycles unless Chris develops a reaction called a hama. Then it will be 2 weeks there 8 weeks home. He will also be getting radiation in St Louis for 3 weeks.

Tuesday, October 28, 2003 1:57 PM CST

We got the results of Chris' scans yesterday and they were not as good as I would have liked them to be. They found a spot in his chest measuring about 2 cm in diameter. The doctors aren't sure if it is residual tumor (part of the original tumor), a new tumor, or just scar tissue. Chris will have to undergo another surgery to have this removed. We don't know wether the surgery will be done in St. Louis or New York. We won't know what the mass is until sometime after the surgery. We pray that it is just part of the original tumor and not a relaps.

Tuesday, October 7, 2003 9:12 PM CDT

Chris is doing well. We just got news that he will be going to Sloan Kettering Cancer Treatment Center in New York. We have to be there Monday for testing.

He will be involved in a clinical trial there. So we will be going back and forth to New York for about 6 months. I feel this is a good place for Chris to do the remainder of his treatments. Sloan Kettering is basicly the headquarters for neuroblastoma research.

Brandon will be coming with us for the initial consultation. However Amanda and Aaron will be staying at a friends house till we get home (thanks Chrisi).

We will be driving there for the first visit then I will probably be flying for the next few visits.

Thursday, September 18, 2003 11:20 PM CDT

Chris is a 2 year old boy. He was diagnosed with neuroblastoma stage3 (aggressive) 1 month before his 2nd birthday. He has a twin brother (Brandon) an older sister (Amanda) and an older brother (Aaron).

I had taken him to 3 different doctors and was given 3 different diagnosis (flu, sore throat, and constipation). My husband and I knew something else was wrong so we took him to the E.R. at Cardinal Glennon Childrens Hosp. in St. Louis, MO. We were told that my son had a very large mass in his abdomen within a 1/2 an hour of being at the hosp.
His tumor was on his left adrenal gland and measured 17cmx12cmx9cm. His aorta had been pushed to the right side of his body and his left kidney was flat. His blood pressure was 220/110.

After several rounds of chemo we were told that the tumor had shrunk enough to have it removed. So on 6/30/03 Chris'tumor and adrenal gland was removed.

He is doing well with treatment and is currently in the hospital recovering from high dose chemo and a stemcell transplant.

Thursday, September 18, 2003 10:54 PM CDT

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