Home for the Weekend!

The stem cell harvests continued today and will continue tomorrow and then we can fly home for the weekend and return to NY on Monday. Nick has an important pre-op appointment with the surgery team on Tuesday morning at 9:00am. His surgery is scheduled for Wednesday.

This week has been tough for us since we didn’t think we would be here all week but once the reality of that settled in, we have done fine. Yesterday, we found the baseball fields at Central Park and played wiffle ball for about two hours. We also watched some people try to play softball on one of the fields….they were horrible! Tonight, we have a visitor in from Granite Bay so we are looking forward to having dinner with him. Nick wants Uncle Jacks again and I am trying to talk him out of it!! Nick is standing here watching me type and he says I am not going to be able to talk him out of it.

Nick is totally pumped to be going home and is acting like his old self….skipping all around.

Stem Cell Harvest Continues

Nicks white blood count has jumped from 3.5 to 10.7 so today should be a much better stem cell harvest. Yesterday was a bust as only .2 of the 7 million cells that are needed, were collected. I am told that it is unlikely that enough cells would be harvested today either, so this effort will last through Thursday and could last through the week. The two favorite words from the book “Ball Four” come to mind right now.

Other than this, we are doing fine here. Nick really enjoyed seeing his teacher yesterday and was so happy to be feeling good that he skipped up and down the streets after dinner. We went for an ice cream and watched baseball games on TV before calling it a night so we could get up with the chickens and head to the donor room again.

Stem Cell Harvest Begins

Once again we arrived first thing in the morning at the MSKCC donor room and this time Nick’s counts were high enough to get started with the process. They collect the cells and then process them and will let us know by 5:00pm tonight if they collected enough. The Doctor said it is very unlikely that enough will be collected today and that we would have to return tomorrow. If we are lucky and they got enough….we will bee-line for Kennedy and fly home…..otherwise…..same plan tomorrow.

Nick’s teacher is in town and will visit him this afternoon…he will love to see her!! Last night, he made me take him to the same steakhouse that I took him to the night before. He didn’t have to push me real hard but that one is near Penn Station and I wanted Italian food closer to the hotel….but, they have taxi’s here so off we went. He had a filet and I had a T-Bone since I had my usual Sirloin the night before. FYI – A Sirloin is called a New York everywhere but here.

New York

Nick and I arrived last night, had a nice dinner, and after a short nights sleep, we arrived at the PDH at 7:30am. Unfortunately, Nick’s blood test results were such that we were unable to do the stem cell harvest and instead, they told us he needs both platelets and red blood transfusions…..so, that is what we are doing. Nick is sleeping from the premeds that he is given to prevent reactions and from being tired after the cross country flight. I am just sitting in the room with him and doing my work.

We will try again tomorrow, & Wednesday, & Thursday, etc. for the stem cell harvest. Whenever it gets completed, we will fly back home.

HOME!

From Ken:

At about 2:00 Eastern yesterday, we got the word that the bone marrow can't happen this week so they told us to come back on Monday at 7:30am. After getting approval from two of the oncologists and two of the nurse practitioners (I could be driving them nuts) that it is safe to fly, we scrambled, got tickets on Jet Blue, did a 5:00pm work conference call and bolted for JFK. The flight sat in traffic at JFK for two hours on the ground but other than that was uneventful. Both sets of grandparents and Leanna and Lawrence met us at the airport at 1:30am. We finally turned in around 3am. Nick and I were both up and at em at 7:00am this morning. Nick slept most of the way home on the plane and I just had a lot on my mind. Fortunately, it was a light day for conference calls and I am mostly under control. We leave again on Sunday but could and should be back home by Tuesday or Wednesday of next week. Then, we return to NY the following week for Surgery.

Bottom line....happy to be home and Nick is doing GREAT!

No Stem Cells Today!

When we arrived @ the PDH at 8:00am this morning, we were fired up to get the bone marrow stem cell harvest behind us and come home to Granite Bay. Unfortunately, Nick's white blood counts are fluctuating wildly. On Friday they were .7, Monday 2.5 and then today .3....#$%^&*#$%^&*???? The staff here, took it in stride and said the counts can fluctuate.....no kidding! He needs to be in the 2+ range in order for the harvest to work. So, we go in tomorrow for another count and we have an appointment for Friday to do the harvest if Nick's WBC is good. He will be then hooked up to a machine(no pain or side effects) and they will need 7 million cells to be effective. We may still get to come home this weekend, and since the harvest can take a few days to get enough cells, Monday or Tuesday or Wednesday of next week is not out of the question. Bottom line....We'll be home when we get back! Hope to see everyone at that time!!

Another warm day in NY

From Carolyn:

Yesterday Nick went into the PDH(Pediatric Day Hospital) and received a platelet transfusion. You could tell by the bruises on his body, that he was in need of platelets. Today Nick did not have any appointments. He spent the day relaxing in the hotel with his brothers' and uncle. Together they played Guitar Hero and really enjoyed the game of LIFE. They laughed and goofed around like brothers do!! Nick is feeling better.....finally.... and his food intake is slowly increasing. He actually wanted to do the school work his second grade teacher, Mrs. Hab, had sent to him. One reading comprehension story was on wishes. I asked Nick what he would wish for if he had one wish and he replied, "I wish that it would be one year from now, so I would be cancer free." Amen to that!! Although he has been handling his illness with grace and courage, he so wishes it was all behind him and life was normal again. Nick has been receiving two GCSF shots a day from Mom to boost his white blood count to prepare him for his bone marrow harvest tomorrow. These shots have not been easy to administer, but Nick is brave and knows they are necessary for the stem cell collection. We are hoping this procedure can take place tomorrow, so we can head back to California for a weeks rest prior to Nick's scheduled surgery on August 2nd.

From Ken:

Happy 70th Birthday to my Dad!!!

As Carolyn said, Nick is starting his bone marrow harvest today. It can take a couple of days to get enough stem cells for them to freeze. The idea is that they take these clean stem cells now and save it away....if the cancer ever returns down the road, they can use it for a bone marrow transplant. Here at MSKCC, they use a special antibody called 3F8 instead of a bone marrow transplant as part of the initial treatment and only use the transplant upon relapse.....lets hope we never need it. It still looks good for us to come home but I don't expect to actually get the green light until Friday.

No Admission Yet!

It is about 1:30 Sunday afternoon and Nick is still
doing well. Another day or so and his counts will be
coming back up and we will have made it through this
cycle of Chemo without hospitalization.....YES! We
are not out of the woods yet as the fever can come on
quick and then it means admission and 10 days of
antibiotics. The weekend has been fun as we met
friends, relatives, ate at excellent restaurants, went
to the zoo, the Empire State Building, central park,
and of course the stores. We are still hopeful to
return to Granite Bay next Saturday 7/22 through
Saturday 7/29 but we won't know for sure until
probably Friday that we are coming.

Long Day at the PDH

From Ken:

Nick needed a blood transfusion today which has been standard practice during the 5-10 days following chemo. We will likely be here until about 6pm and then go back to the hotel. Nick is neutropenic which is a fancy word meaning he cannot fight infection because his white blood count is too low. We are really hoping he does not get an infection because that means instant admission to the hospital and heavy antibiotics. He has a few more days until his counts start coming back up. Leanna, Mike and Kim arrived this morning on the red-eye and are out shopping around.

Much Better Weather Today

From Ken:

Nick is hanging in there but not himself as he is just about at the low point for blood counts during this round of chemo. He has to back to the PDH tomorrow and we hope they don't keep him. Fingers are crossed. A work friend met me for lunch today and brought Nick a "History of the Raiders" DVD and all the boys ....especially me....enjoyed watching that!!! We had lunch at the same little Italian joint around the corner that we went to before. It is really good. Me and Massimo (the owner) are old buddies now and he couldn't stop talking about the Italian Soccer team....Tomorrow, Leanna and her uncle Mike and aunt Kim are flying in on the red eye. We are looking forward to having them here and Nick is excited to see them.

Rainy NYC!

From Carolyn: Nick is feeling better today…..experiencing just a bit of nausea. After vomiting the other day Nick said, "Mom…it felt like my ribs came up to my throat". The poor guy is really feeling the effects of this third round of chemo!! We still have to encourage him to eat. A Lynch without an appetite is a scary thing!! We went to MSKCC(Memorial Sloan Kettering Cancer Center) for blood testing today. His counts are low, but no blood transfusions are required yet. He came into NY weighing 85 pounds and is now at 78. Lawrence got a splitter for his IPOD, so the two of them listened together to Lawrence 's music. Rocky Mountain Way and Walk This Way have become Nick's favorite songs. It has rained most of the day, with heavy thundershowers at times. Ken and Kenny even left the hotel to "walk in the rain". Goes to show you how bored they have become!! Nick has been given the "okay" to go to the theatre, provided he wears a face mask and does not touch a thing. He is getting used to opening doors with paper towels and using his feet to flush! We were able to get out and see Pirates of the Caribbean and plan to see Cars this evening. Sending our love to all from NY!!

From Ken: There is a reason why people went West!!!! The weather here is rainy, hot and humid. I am starting to miss swimming pools, hot tubs, walk in showers, big cars, big 6 lane freeways, golf clubs, in-n-out burger, GB friends, family and BASEBALL at Lakeside Little League!!! Congratulations to all our teams for a great run....

Tuesday Also Good

From Ken:

The nausea medicine is working. Goal for today EAT! Nick is eating a little but needs to bulk up between now and his surgery on August 2. Hopefully, his appetite will be back soon. Carolyn took the boys to see a movie last night down on 2nd Avenue and I watched the superior American League beat the National League ..... again!

Monday was good!

From Ken:

Nick slept and slept from 11pm Sunday until Noon on Monday. He really needed that to sleep off some of the chemo and other medicines that he is taking. Carolyn took him in to the PDH around 2:00pm while I stayed back for work and conference calls. All his tests and counts are good right now so it made for a good day. We don't have to take him back until tomorrow so our challenge today is to get him to eat his favorite foods and drink tons of water and keep the nausea under control.

Many have asked about the gas blast in NYC that happened yesterday....it was two avenues over and 22 blocks away. For New Yorkers, it may as well have been in Montana! It didn't affect us at all but we did hear all the emergency vehicles racing to the site. It is weird to hear the sirens on the TV and outside your window at the same time. Last time that happened to me was 9/11 when I was about the same distance away from the Pentagon.

Time in NYC from Carolyn

From Carolyn:

Nick experienced some nausea last night and again this morning. They doctors warned us that this round of chemo is really "tough on the gut" and sickness is expected throughout the next week. Nick has handled it well, once he is over the nausea, he is right back to playing light saber and fighting with his brothers'. The resiliency of children is amazing! Nick has truly enjoyed having his siblings around. When he feels well, together they have shopped, dined and taken in some sights of NYC. When he is recovering from chemo, such as now, they have enjoyed watching movies and just talking and laughing. He lights up when they walk into his hospital room to visit. There is an article in the Time Magazine labeled "How Your Siblings Make You Who You Are". I found it very interesting that the research claims your siblings are the ones who truly shape you and are "with you for the whole journey". If you get a chance, read it and see what you think. I mentioned to Nick yesterday that he looked a bit pale and he replied "well....it's not like I have been out in the sun or anything, Mom". So very true, since his summer, thus far, has been spent in either a hospital or hotel room. We hope to get back for some California sunshine the end of July...if things go well. We miss all our family & friends and think of you often.

Out of Hospital!

From Ken:

Three cycles of Chemo are complete!

Nick is at the hotel with his backpack full of IV fluids that will finish tonight. He also has about 5 different prescriptions for Nausea medicine. The Nausea medicine is mostly working and he is mostly comfortable. No hospital or other appointments today so we are looking forward to hanging out at the hotel. Carolyn says she will add a blog update later today...stay tuned!

Chemo Continues - One more Day!

From Ken:

We hope Nick can come home from the hospital on Saturday when he is finished with this cycle of chemo. He had to be admitted tonight because the PDH is closed on weekends. So far, he is doing real well but we know that the worst days of chemo are the 7-10 days after it is finished.

Today was extremely busy for all of us and we are looking forward to the weekend. Leanna is on her way back home while Kenny and Lawrence are getting settled in to New York City. All four of the kids played together for hours today in the awesome play room here at MSKCC. They are equiped with all the latest Nintendos, PlayStations, and computers. Leanna spent time on MySpace and the boys played games including Guitar Hero. Carolyn and I are looking forward to getting our apartment finalized which will take another week or two. The place is a condo that has a homeowners board and we must be "approved"......whatever!!!.....please give us a good reference if any of you get called.......

Nick continues outpatient Chemo

From Ken:

He is doing well so far and gets to go back to the hotel at night with a little backpack full of IV fluids. He is such a trooper and doesn't complain at all. Friday, they will admit him because the PDH (Pediatric Day Hospital) is closed on weekends. He is supposed to get his last chemo of this round on Saturday and then be able to come back to the hotel with his backpack. He will continue with checkups the week of 7/10 and then when his counts come back up, he will get a bone marrow harvest. Hopefully, we can come back to GB for a few days towards the end of July. We will know for sure when the plane lands.

Macy's East River Fireworks

From Ken:

Wow....New York knows the meaning of "fireworks". We can honestly say it was the best display we have seen in our lifetime. We watched them from the roof of our hotel (16th floor) and they were awesome.....they closed the FDR and thousands of people sat on the freeway to watch the show. We were lucky to be able to view them from our hotel roof top with no long walk lugging stuff to a designated location. It is only 10pm here, but we are all heading to bed.

Tomorrow begins Nick's third round of chemo. He is scheduled to be at the treatment center at 7:00am. He will have four days of chemo drugs and then another six to ten days to recover from the treatment. These are new/different drugs than the past two treatments and we hope & pray Nick has an easy time. Hopefully, by the 15th or so, Nick will be Nick again....then surgery. He is holding up well...just experiencing slight back pain due to the bone marrow procedure where needles were inserted into the front and back of his pelvis. The little guy just keeps taking it and going back for more......he knows it is part of the process of ridding his body of this awful disease.

Fireworks on the Hudson!

From Ken:

We took a train from Grand Central up the river, approx 45 minutes, to a friend's house and had a nice bbq, played catch and wiffle ball in his huge un-fenced back yard, caught fireflies and then watched fireworks along the Hudson. It was a nice time and a nice break from honking yellow cabs.

Nick completed both a bone marrow and a CT scan today at the hospital. The bone marrow required general anesthesia so it was no fun at all and it took from 7:00am until about 2:00pm to get everything handled.....

The best news of all is that Nick is responding to the chemo. The tumor has shrunk, as evidenced by the MIBG scan, but they need the results of the CT scan to know the exact size. In addition, the MIBG scan was totally clean. A dark area in his arm from before is now GONE! The Dr. expects the bone marrow to also be clean. My understanding of the next steps are:

* Continue round three of chemo(beginning July 5th)to keep shrinking the tumor.
* Remove the rest of it with surgery on August 3rd.
* Continue round four of chemo to get any remaining tumor that cannot be seen.
* Perform radiation on areas of the tumor and the arm where they think it may have been.
* Maybe do round five of chemo or skip it if deemed un-necessary.....fingers crossed. He is basically cancer free at this point....hair grows back and then....
* Start an antibody treatment that attaches to any remaining Neuroblastoma Cells and cause Nick's own immune system to attack them.
* After several weeks of the antibody, a vitamin regimen is started.
* Continue tests and hope & pray for no relapse!!!

Of course...all of the above can change at any time but that is what it looks like today. We are cautious not to get too excited about good news and not get too down about bad news. The key is to take this one day at a time.

We met a nice New Yorker and his wife at an Italian restaurant on Saturday evening. He took a genuine interest in Nick and has invited all of us to view the fireworks tomorrow from an apartment overlooking the East River. It should be an awesome display of lights. God Bless the USA! We miss our friends and family, but know that Nick is in good hands here in NY.

Sunday in New York

From Ken:

It was an interesting day....not as fun as yesterday but not bad.....Nick needed his antibiotics at 8:00am so we started them and he had a reaction....He also had a reaction yesterday but it was short. This time it was bad(cough & swollen eyelids) and we called the hospital and took him in....they were very efficient and looked at him right away and then studied all his tests...after discussing with the head of oncology they said we could stop the antibiotics since he had several days of them and his Thursday culture was clear....Nick was so happy he skipped all the way from the his room to the front of the hospital....that is really far as the hospital takes up an entire block (York Ave to 1st Ave and 68st to 69th street) We then hung out at the hotel until 5:30pm when the entire gang went to St Patrick's Catedral for mass. Tomorrow Nick goes back to the hospital at 6:30am to get a CT scan. Therefore, we are turning the lights off early tonight and heading to bed.

I thought this was an interesting link regarding the surgery center here...

http://www.tmcnet.com

NY Weather is Spectacular

From Ken:

Monday is a CT Scan and not a Bone Marrow test as stated in the last update....The bone marrow should be Wed or Thurs.

Today was a great day. We played catch, hit balls and ate great Italian food!!!!!!!!!!!!!

From Carolyn....

Nick got up early this morning, 9am EST, to head to Sloan Kettering with Dad & Kenny for an MIBG scan. He rolled out of bed without a complaint. The scan lasted about 2hrs. Nick, Dad and Kenny then met Mom, Leanna and Lawrence at Central Park to play a little baseball. Together the four boys played catch and wiffle ball. The kids also climbed some rocks. It was a beautiful day in the park. It was fun to just "people watch" and relax in the park. We then took a bicycle ride (the cyclist rode while we all sat) to FAO Schwarz to let Nick experience the toy store. He thought it was awesome and one of the most amazing places he has ever been. He selected and built another Lego, a digger, from the city collection. He was amazed at the life size Lagos of Wookie from Star Wars and Hagrid from Harry Potter. We took a taxi back to the hotel and relaxed for a bit. We then enjoyed a wonderful Italian meal at Sams on 39th and Lexington. Nick feasted on pizza and ravioli. All in all, it was a nice "family day" with Nick in good spirits…..running, catching, climbing and enjoying the sights of New York. A great day shared amongst our family…..a much needed sense of normalcy, once again.