Bye Bye 2005

What a year! It was a roller coaster of a year for sure.

January 1, 2005 - HIGH - Life was good. Nathan had been NED (no evidence of disease) for over a year. Antibodies were done (no more travelling to NYC every 8 weeks for incredibly painful infusions for Nathan). Luke and I decide to proceed with trying for baby #3 as soon as we are able.




March 14 - HIGH - Very faint positive on pregnancy test!

March 14 - April 7 - LOW - concerns about the viability of pregnancy

March 16 to March 30- LOW - Nathan begins to have hip pain. Hip pain exactly like he had when he was diagnosed. Luke and I fear the worse - RELAPSE. We begin a process of tests and scans. This process takes 2 full weeks during which we are terrified.

March 31 - HIGH - Nathan's test results all come back clear of cancer. He has transient synovitis - a virus in the hip.

April 3 - April 7 - LOW - Julia is sick - no one is sure what is wrong with her. Turns out she has Kawasaki's disease (KD). She is hospitalized twice - doctors are disagreeing about whether or not she has KD. She finally gets KD treatment at hospital. A week later heart and blood tests show she did have KD.

April 7 - HIGH - leave Julia at hospital to get my ultrasound. Ultrasound shows healthy embryo with a heartbeat.

Late April - HIGH - we leave to go to Disney World on Nathan's Make-A-Wish trip.

April - next day... LOW - Nathan's hip pain is back with a vengence. He cannot walk. We enjoy the Magic Kingdom anyway.




May - HIGH - Everyone is feeling good. Julia's heart is normal, Nathan's hip is better. Pregnancy is going well. Enjoy a trip to Arizona to hang out with friends.

June early part - HIGH - Have a great trip to visit my parents in Hilton Head.


June 24 - LOW - Routine scans show Nathan's cancer has returned.







June 28 - HIGH - ultrasound of baby shows all is well.

July 7 - HIGH - Nathan is scheduled for surgery on Aug 1 in NYC. We are releived to have him on the schedule with the best surgeon in the country for this and also intra-operative radiation

July 15 - LOW - Nathan's surgery pushed back to Aug 31 - this means more chemo and a chance for cancer to spread while we wait

July 27 - LOW - Nathan's surgery pushed back more to September 15. We are getting upset about the delays and the chance Nathan's cancer will spread while we wait.

August 1 - HIGH - Nathan's surgery rescheduled to Aug 3...off we go!

August 3 - HIGH - Nathan's surgery is succesful. The entire tumor is removed and area irradiated.

August - HIGH - Nathan starts kindergarten and Julia starts preschool










September - HIGH - My brother Jason gets married - we attend wedding in Grand Lake, CO

November 16 - HIGH - Lauren Elizabeth Gentry makes her appearance into the world.


December - LOW - Nathan has his scans. The anticipation and possiblity of bad news is extremely stressful.

December 9 - HIGH - Nathan's scans are all clear! He is NED once again.


So - it has been a bumpy ride - but I am glad I can say that the year has ended with a high!

More honeymoon pics...

More of my favorite shots:

The Pu`u `O`o vent, Kilauea Volcano. Taken from a helicopter. Definately the coolest thing I have ever seen in person

Luke at Volcanos National Park.

Me at the base of a waterfall at the end of a hike in Maui.

Ah...bliss!

I recently had our honeymoon (September 1997) pictures put onto CD. They were previously on APS cartridges. Anyway - This picture was taken on a sunset dinner cruise in Maui. It was also my 25th birthday. Boy do we look young!

My Sunshine

 

Baby Sleeps in Own Room!

Last night was the first night Lauren (6 weeks old yesterday) has slept in her own bedroom. She has been sleeping in a bassinet at the foot of our bed. She was definately on a trend of waking up only once per night and so we decided it was time. Well - she slept ALL NIGHT wihtout a peep. She woke up at 6:15! I fed her and then put her back to bed until 8:00. Too bad Nathan and Julia get up at 6:30.

Now - I won't jinx myself and say this trend will continue - but I am delighted she did so well her first night.

Choir - rehearsal for Jan 1, 2006

Even though I have a cold and sound like a frog I returned to choir last night for the first time since Lauren was born. I really missed singing and was happy to return.

Introit: O thou that Tellest Good Tidings to Zion (from the Messiah) - Handel
Offering: This Child Is - arr. Fettke
Minstry of Music: Shine on Us - Smith

I absolutely love singing Shine on Us. Now I just have to hope I have a voice on Sunday.

Ok - me too

So - I have been blogging for a few years - but in a different forum. I have kept a website updated on my son's journey fighting neuroblastoma, a childhood cancer. I have been able to put some personal thoughts on this site - but its purpose excludes me from fully expressing myself and addressing other areas of my life. So - on the heels of my husband, Luke I have created my own blog.

Nathan's Story

Nathan was born on June 16, 2000. He was a very happy healthy little boy until March of 2003, when he began having fevers. He then developed a swollen black eye one weekend and I took him to the ER but they never figured out what it was. A week or two later he started to limp. On April 1, 2003 he was diagnosed with Stage IV Neuroblastoma. He had a large tumor on his kidney and cancer throughout his bones and bone marrow.

Nathan's treatment protocol called for 6 rounds of high-dose chemo followed by surgery and an autologous bone marrow transplant (his own bone marrow given back to him after super high-dose chemo). After all of that, Nathan was still not in remission and we took him to Memorial Sloan Kettering Cancer Center in New York City where he had surgery to finally put him into remission followed by a year of antibody treatments. During this year he attended preschool and lived a normal life in between visits to NYC. He finished that protocol in October 2004 and then he relapsed in June 2005 with another tumor. He had more chemo and surgery in August 2005 to removed the tumor. He came home and started morning kindergarten and would have chemo in the afternoons. We found out he was in remission again in December 2005. He continued with the chemo and then switched to a light medication in the spring. In June 2006 we found out he relapsed again, this time with cancer throughout his bones but no tumors and his bone marrow was clean. He had some high dose chemo at home and then we headed to NYC again in September and enrolled him as the first patient in a new clinical trial. We ended up staying there through mid-December 2006 where he was hospitalized for 6 weeks and his cancer progressed. He came home right before Christmas and we spent our last Christmas together. He was still feeling good at this point and we gave him some light chemo to slow the cancer as much as possible. Nathan went to first grade in January where he had a wonderful semester. By the last two weeks of school he was slowing down and beginning to be in pain but he finished school.

Nathan died slowly and painfully, but at home with his family on July 29, 2007.

Nathan loved cars and trucks and legos and playmobil. He loved his little sisters and school. Nathan was an old soul and had a mature appreciation for natural beauty. He remained a happy, playful child despite the treatments and pain. He was a wonderful son.