Mostly a quiet day

From Ken:

Mostly a quiet day. Nick is comfortable but he is not eating much and has very little energy.

At about 7pm he felt a little warm and Carolyn took his temperature many times with different thermometers and we got several different readings including some over 100 which means go to the hospital. So, we are at the hospital and the readings are all over the place including 98.6. Bottom line...the thermometers, even at the hospital are not perfect. They are giving him some fluid and antibiotic and then maybe they will send us home....There is very little margin for error when the white blood count is so low and he cannot fight infection on his own. In a few more days, the counts should go back up and he might have some more energy.

A great Weekend

From Ken:

Nick and all of us had a great weekend!

He has mastered the taking of various medications and Carolyn has mastered shot giving as Nick won't let me do it. Nick needs one shot each day in the leg to help his white blood cells. Although he was a little more tired than usual, he fished at his grandpa's house and actually took BP with his brothers and me. His brothers were nice enough to let him hit and then sit in the shade while they shagged the balls for him.

Today, we have a routine appointment to monitor his blood counts.

Nick is home!!!

From Ken:

His next admission is not until the middle of June and we hope he does not have to go back until then. It is possible or even probable that he will get an infection or have another complication that could cause a hospital stay but hopefully it will be short. It is wonderful to have him home. We are thrilled to be out of that place.

Lawrence got the game winning hit in the second game of his DH today. I hear it was an absolute fisted bloop duck that should have been caught but they don't draw pictures of 'em in the scorebook....it just says 1B, RBI. Way to go Lakeside!!!

PS: From L&G: Happy Birthday Ken! We're so glad Nick is home to share it with you.

Chemo is over for now

From Ken:

The chemo is over for now. Nick is recovering and doing better and better. We are all looking forward to getting him home tomorrow for hopefully two weeks (barring infections, fevers, and other complications). He had a blood transfusion today and is scheduled for an MRI tomorrow AM which will further document his diagnosis. Our fingers are crossed that it will confirm all the previous findings.

Chemo continues, settling into a routine

From Ken:

The Chemo continues until 1:00am Friday and then he will complete the first cycle. Approximately two weeks off and then cycle two starts. Nick is not the happiest camper in the world right now, but he is still doing pretty well. The doctors say he is acting normal in light of what has been happening to him. We had hoped to take him home Friday but now it looks like Saturday.

Thanks to everyone who have sent gifts both to the hospital and to our house....we are getting them and really appreciate it. Please bear with us as we are a little slow on the thank you cards. It is especially great to see the little league teams (boys and girls) sending Nick signed cards and baskets, etc. There is a huge bunch of balloons that were sent today hanging over Nick's bed. Thanks also to all the meals on wheels providers that are keeping us fed and of course to our families who are doing countless tasks. We even had a friend over this AM watering plants and pulling weeds! Wow!

Nothing is normal for us yet but the reality of our new schedule is settling in. I am fortunate that we have cell phones, laptops and high speed Sprint pcs cards. I have actually worked a mostly normal schedule (minus travel) since last week and all of this week. I even get my work voice mails electronically sent via e-mail where I can listen to them from the computer and then call if necessary. I have done conference calls from the hospital room, the hospital cafeteria, and my car. Looking forward to the home office next week.

Ribbon Pins in support of Nick

Jenny Magleby, a board member of Lakeside Little League has ordered "ribbon pins" for every baseball and softball player in the league. It is a pin specifically designed to show support for those battling childhood cancer and more specifically Neuroblastoma. Every player, coach and parent is encouraged to wear these pins. To see what they look like go to:

www.personalizedcause.com

If you would like to make a donation please feel free to do so at the Feist Park Snack Shack or contact Jenny Magleby directly.

More information about Lakeside Little League can be found at www.lakesidell.org

Chemo continues....doing well

From Ken:

Not much to report today except that chemo continues. Nick is taking on high doses and doing as well as can be expected. The drugs that counter the side effects are mostly working for him. He has periods of pain and misery but they pass with pain medicine and for the most part he is comfortable. It is very hard for us to see him laying there will all kinds of tubes and wires coming out of him. Carolyn is on duty tonight and it won't be much fun. Sleeping is impossible as they are in and out of the room all night long, with monitors beeping and now Nick has a roommate so it will be even more busy in the room.

On the sports front....Kenny's team blew a 4 run lead and then won in extra innings. It was a very exciting game and it was nice to talk to all of you that came up to me. The hugs from the moms were much more enjoyable than the hugs from some of you guys!!

Picture of Nick at the A's game

Sunday, April 23, 2006

Take the Field with the A's

Nick's Treatment Begins...

From Ken:

Nick's treatment started last night at 1:00am. He is being given 3 different chemo's in high doses. Nowadays, they also give some fairly new medicines to help with the side affects of the chemo. Nick seems to be accepting all of them and is mostly tired and resting. He will watch cartoons for a while and then doze back off. He is not his normal happy self but he is in relatively good spirits. Carolyn and I are taking turns with the overnight duty and I am on tonight. The current plan is for Nick to be home on Friday for a couple of weeks until his next round of chemo. We will have to monitor him closely while he is home and bring him to several outpatient visits. The chemo cycles should continue through September. After the second cycle, they will do another CT Scan to determine how much the tumor has shrunk.

On the baseball front, Leanna got her picture in the local paper saying that "Sophomore shortstop Leanna Lynch and her .368 batting average is one reason why Granite Bay made the playoffs." They lost the playoff game but had a good season with a very young team...just wait 'till next year!!! Leanna was told she made the all-conference team for the second straight year.

Lawrence's team had a learning experience last night...translation...they got their butts kicked! I was in the dugout for most of the game but obviously didn't help much. Lawrence did smoke a triple over the left fielders head in the last inning. Maybe he can do that earlier in the game with guys on base next time.

Kenny's team is playing real well and so is he. He is consistently hitting the ball hard and I got to see his best hit of the season last week. He plays again tomorrow.

You can tell that I am just sitting in the hospital bored out of my mind to be writing this much. Back at you again tomorrow.

Treatment Plan Confirmed

From Ken:

Monday - 5/22/2006 - 3:00PM

We met with a major Neuroblastoma Specialist at UCSF in San Francisco and she confirmed the treatment planned for Nick. It is considered an "aggressive plan" with 5 stages that go something like this:

• Chemo - We are starting this at Sutter Memorial in Sacramento
• Surgery to remove whatever is left of the tumor (this is a major operation and may be done at UCSF)
• Bone Marrow reconstruction (major month long ordeal that will be done at UCSF) More Chemo
• Radiation
• Biological Differentiation Treatment

It will be a very difficult year for Nick and for all of us but we are ready to start the fight.

A Beautiful Prayer Service for Nick

From Ken:

Friday - 5/19/2006 - 11:00 pm

Wow!! Hundreds of people showed up at the church to pray for Nick! On a Friday night! Carolyn and I are appreciative, amazed, and humbled but the number of people that showed their support. Nick's arrival was not planned. While he was sitting home with his Aunt Kim, he decided he should make an appearance.....we are all glad he did. People came from the Bay Area, San Jose and all over the Sacramento area to wish Nick well.

On Saturday, Kenny plays baseball at 9:00am, Lawrence has a double header in the Bay Area and Leanna is in the section playoffs at the Sacramento Softball Complex at Business 80 and Watt. Her game starts at 10:00 which is going to be early since she is at the Senior Ball tonight and won't be home until late. I will get to see the beginning of Kenny's game and then race to Leanna's game and then spend the afternoon fishing or playing with Nick.

Nick will hang at home and then head into San Francisco on Sunday afternoon with us for an appointment on Monday.

Nick Resting at Home - Treatment Starts Soon

From Ken:

Thursday - 5/18/2006 - 4:30pm

Nick is home and taking a nap.

He has not had a full night's sleep since last Thursday and he really needs it. There is no way to rest in a hospital and we think this little break will help get him ready for what he is in for....lots of treatments.

Many of you have advised us to get copies of everything and to take notes....we have done exactly that!!! Thanks! Also, many have advised us to have a third party with us for the meetings and consultations, etc. and we are thankful that not only did we have someone with us but that person was a DOCTOR! When we moved to Granite Bay we did not know any doctors and now we have about a dozen that are friends and they are all helping us!.....truly amazing!!! Thanks everyone for your support so far!

Home for the Weekend

From Ken:

Wednesday - 5/17/2006 - 5:00pm

First the good news, then the reality of this situation. Nick is doing great and looks great! He is coming home tomorrow for the weekend to hang with Leanna and his brothers and friends.

Now, the reality. Most tests are in and Nick has been diagnosed with a rare cancer for an 8 year old called Neuroblastoma. Nick's case is Stage 3 - High Risk. This means that a 5 step treatment process is being defined that will last about 8-12 months. As of right now, the plan is to start treatment on Monday after confirmation of the treatment plan from another specialist.

Carolyn and I really appreciate the help and support from everyone! Let's beat this thing. Nick is a fighter and we have hope and optimism that he will win this battle.

Nick in Great Spirits - One More Test on Wednesday

From Ken:

Tuesday 5/16 - 10:22pm - Nick is his old self again and is feeling great! He stayed awake all day long and played with his new toys and was in great spirits! Kenny came down to the hospital to see him and it was very good for both of them. Did I mention that Leanna and Lawrence both won their games and had two hits a piece!! Leanna's win sends Granite Bay to the section playoffs!

Tomorrow, Nick has an MIBG test. MIBG is a nuclear scan test that uses injected radioactive material ( radioisotope ) and a special scanner to locate or confirm the presence of pheochromocytoma and neuroblastoma, which are tumors of specific types of nervous tissue. This is the last major test for now. After this, the experts will be analyzing the results of all the tests and start proposing treatment options to the review board. A prominent researcher in this field will see Nick on Monday to assist/develop/approve the treatment plan.

Bone Marrow test is in and the cancer is not present in marrow!!!

From Ken:

5/16/2006 - 12:20pm - Nick is eating mashed potatos and beef jerky.....but the real news today is that the preliminary results of the bone marrow test is in and the cancer is not present!!!!

Several tests including a bone marrow test

From Ken:

Nick had several tests including a bone marrow test. We are waiting for the results as this is the main test that will confirm stage 3 and hopefully NOT stage 4 cancer. Thanks to friends and contacts, Nick is being seen and we are getting a second opinion from one of the nations leading experts. We are comfortable with the plan right now but still hanging on the results of the bone marrow test. Nick is mostly happy and kicking it with movies, play stations, and books.

Prayer Service for Nick on Friday, May 19

There will be a special mass on Friday night at 7 pm May 19th at St. Peter and Paul Catholic Church in Rocklin. Anyone is invited to attend and pray with the Lynch family for strength during this difficult journey with Nick.

The Church is located on Granite Drive.

An Unbelievable Nightmare

My brother Ken and sister in law, Carolyn, asked that we set up this site to help inform their family and friends about their son Nick and his illness. The following post is from Ken:

The Lynch family is experiencing an unbelievable nightmare.

Friday, May 12, our 8 year old son, Nick was diagnosed with a rare cancer. This is the same little boy that just 12 days ago was "taking the field with the A's" and running wild at the Eureka Country Faire. He said he had a tummy ache on the following Monday. After a couple of doctor visits and some blood tests, a friend and fellow Lakeside parent got us in to see a specialist. The specialist expedited Nick's case and he was in emergency surgery last night for a biopsy and now starts the long and miserable treatment process. So far, here is what we know:

1/1/98 - 4/30/2006
Nickie New Year was the first baby born in Roseville in 1998 and a big picture of him was on the front page of the Roseville Press Tribune. He was totally healthy with nothing but an occasional cold or sniffles. He plays baseball, loves to fish, and his outgoing personality resulted in many friendships. He is liked by everyone.

5/1/2006 - Nick says he is tired and does not want to go to school. We are sure he is faking since he is an early bird on Monday's and he had a busy weekend. We let him stay home. He complains of a tummy ache on Tuesday, has a fever by Wednesday and we take him to the Dr. who says he is fine but orders a blood and stool test. Nick was in good spirits but not himself.

5/8/2006 - 5/12/2006 Nick still not right. We are more concerned. Carolyn takes him to the Dr. again and demanded more blood tests, stool samples, etc. One Dr. tells her she is overreacting and to stop reading the Internet. Another blood test gets ordered and Carolyn mentions the situation to Mary Ingersoll at a little league game. Mary gets Nick an appt. with Dr. Yinka Davies in Sacramento for Friday. On Thursday night we get the blood results and 3 levels are elevated. On Friday morning, Dr. Davies takes one look at the on-line blood results and immediately sends us across the street to get a CT Scan. The technician does the scan and says wait here. Then says, go back and see Dr. Davies. She says, go see Dr. Gates for surgery later that night for a mass in his abdomen. They know it is cancer but do not tell us....we get the picture and notify family that something is terribly wrong.

5/12/2006 - 11pm - The surgery is complete and Dr. Gates tell us it is Neuroblastoma and it is our worst nightmare. The situation sounded hopeless.

5/13/2006 - 9am - Dr. Yim (Head Oncologist) tells us we know the following....Nick has a tumor, it is malignant and the preliminary diagnosis from the pathologist is Neuroblastoma. He goes on to tell us that he is cautiously optimistic that the cancer is stage 3 which is treatable.

5/14/2006 - All signs still point to stage 3 but we will not know for sure until Tuesday. Dr. Yim will not speculate on treatment types or comment on survival rates, etc. We are hopeful and optimistic for a stage 3 confirmation on Tuesday....but we just don't know!

*********Website Links Follow************


http://imsdd.meb.uni-bonn.de/cancer.gov/CDR0000258023.html
http://www.cancerindex.org/ccw/guide2n.htm
http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=31
http://www.curesearch.org/