Journal History

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Friday, March 13, 2009 6:36 AM CDT

HAPPY BIRTHDAY JAY!!!

Thursday, March 13, 2008 9:51 PM CDT

HAPPY BIRTHDAY JAY!!!

Wow, I can't believe that Jay would have been 20 years old today. I can vividly remember all of his other birthdays, especially the ones that he had after being diagnosed with neuroblastoma.

I also can't believe that a year has passed since I have last written. Many times I have started to write, but then never knew quite where to start or what to say. Maybe one day, I'll get it together.

One thing I do want to say...... Thank you so much to everyone who has remembered Jay and has signed the guestbook. For every person that Jay and I had met, however briefly, and said, "I don't know if you remember me....", I want you to know that yes, I remember every single one of you and am thrilled to hear from you. I also thank those who never knew Jay personally, but have found their way to this site. It is wonderful to hear from you and to know that Jay's story is being heard. And of course, I also cherish hearing from friends and family. It really does bring a smile to my heart to read the entries.

I really will try to write some about what I've been up to lately, and tell some stories about Jay. I'm not much of a writer, and it's taken me almost an hour to write this much, so I'm going to go now. If there's nothing new here in the next few weeks, you have my permission to yell at me!

Virginia

Tuesday, March 13, 2007 9:34 AM CDT

HAPPY BIRTHDAY JAY!!!

I had always planned on writing about all of the things that Jay did and went through his last 6 months. There was much more than what I had journaled. I had wanted to do it, not only to keep a record of his life, but also in case there were others in this same situation that wanted to follow the journey. Unfortunately, I just couldn’t find the energy to do it then. Now, I’m not even sure if anyone still reads this or cares.

If anyone is still reading this, PLEASE sign the guestbook and let me know, even you never met me or Jay. It makes me feel better to know that people still remember Jay. One of my biggest fears is that he will be forgotten.

Monday, March 13, 2006 6:48 AM CST

HAPPY 18th BIRTHDAY JAY!!!!!


You are missed.

Wednesday, July 13, 2005 9:46 PM CDT

Hi Everyone,

Thank you everyone who has been checking in with me, either by signing the guestbook, cards,
phone calls, emails, invitations, etc. It really means a lot to me and has helped somewhat. Please
don’t stop!

I just wanted to let people know about a video tribute that was made for Jay that was shown at the
funeral home visitation. It can be viewed on the internet by going to
www.barrancofuneralhome.com. Then in the box to “search for obituaries”, enter Barnett. Click
on Jessie Walker Barnett IV when it appears. Then click on View Video Tribute.

It may be fun for those of you who only knew Jay as a cancer patient or teenager, to see Jay as a
little boy too. These pictures that I chose show typical Jay moments. There are also “milestone”
pictures - first haircut, first day of kindergarten. I didn’t realize until viewing this, just how many
pictures were of Jay in costume (and only one was on Halloween!). Two were from plays he was
in, Oliver and The Wizard of Oz. The others, Jay just loved costumes, uniforms, and pretending
he was different characters!

It is a very cute slideshow and well worth checking out. Hope you like it.

Check back in the next week or so. I will post another journal entry about some things.

Virginia

Thursday, June 16, 2005 2:19 PM CDT

I just wanted to add, Jay's favorite color was blue. Everything had to be blue with him, so if anyone attending the funeral would like, please feel free to wear blue of any kind, bright blue, light blue, dark blue, anything.

Also, although we will not be having a balloon release, if anyone not able to attend the funeral wanted to release a blue balloon for Jay, I'm sure he would like that.

Arrangements for Jay:

Viewing & Vistitation:

Friday, June 17, 2005
2 -4 PM and 7 -9 PM
Barranco & Sons Funeral Home
Gov. Ritchie Highway
Severna Park, MD
410-647-2400

Funeral:
Saturday, June 18, 2005 10:00 AM
St. Martin's-in-the-Field Episcopal Church
375 Benfield Rd
Severna Park, MD

Wednesday, June 15, 2005 10:44 AM CDT

UPDATE June 15, 2005 8:40 PM

With a heavy heart, I must tell you that Jay passed away this afternoon. In typical Jay fashion, he defied the medical community's predictions of "within the next 24 hours", and hung around a little longer.

I will post details for arrangements, etc. once they are made.

Jay will be missed terribly.



Hi Everyone,

Jay is still hanging in there. However, he is not happy about it. He is uncomfortable and just wants to "go". But only because he doesn't want to live like this anymore; if he could get better or even just feel better, that would be a different story. We were up a lot throughout the night. I was giving meds, getting water, helping him sit up, and even carrying him into the bathroom (his bowels are still functioning just fine!). He asked me a few times when the 24 hours would be up. He is terribly thirsty and is drinking a lot, but it causes him to be even more short of breath when he swallows. So, he has been eating ice chips, but it's not the same.

In the midst of all this chaos, Jay still says the funniest things and makes me smile. I had spoken to one of his friends, but at the time, Jay did not feel like talking. I told Jay that his friend would be calling him later that night. Jay shook his head and said something to the effect that "no, he wouldn't talk to him when he called". I asked why and Jay replied, "Because I'll be gone by then." Maybe you had to be there, but it was a typical Jay moment.

Jay keeps saying that he wants to go to paradise and swim in the beautiful water and drink lots of fresh, cold water. He was upset about having his mediport removed last March because he very much wants to go swimming. So, he plans to do that as soon as he gets to heaven.

I'll try to update again later. Thank you everyone for checking in on us and for all of your support. I really enjoy reading the messages, and I try to read them to Jay too.

Virginia

Tuesday, June 14, 2005 1:38 PM CDT

Hi Everyone,

Things are not going well here. Jay doesn’t seem to be bouncing back the way he usually does.
The hospice nurse was out today, and based on a few observations, she believes that Jay will go
sometime in the next 24 hours. Jay told me (for the first time) yesterday, that he is tired of feeling
this way and he is ready to die and go to heaven. He says that if heaven is as great as people say,
then he would rather be there. I am selfish and would rather he stay here on earth with me.

Anyway, Jay has surprised us before; there are things that have happened over the last 6 months or
so that I never got around to posting, that proves just how tough Jay is. There are several times
that doctors have told me that Jay would be going any minute, and he didn’t. He is one tough,
brave boy. I hope that the next time I post, there will be happy news, but I’m probably deluding
myself.

I’ll keep you updated if I can, but I need to spend time with Jay. If I don’t answer emails or phone
calls for awhile, please try to understand.

Virginia

Sunday, June 5, 2005 11:30 PM CDT

Hi Everybody!

Sorry about the long time since the last update. I am finally online, but I still have trouble sitting for long periods of time and writing. Anyway, to make things short, Jay is still hanging in there. Some days are better than others. This past week has not been particularly good - he has been in a little more pain than usual, and he has been very drowsy. The sleepiness can be attributed to all of the narcotics that he is on (fentanyl patches, methadone, and dilaudid) and also to low hemoglobin. This past week he only had one unit of red blood transfused instead of the usual three units. We will go back to the clinic tomorrow.

Jay tries very hard to stay awake, because there is so much that he wants to do. He continues to amaze me, but also he worries me. He has essentially been off of any type of treatment for the last 3 weeks and I really don't like that. Unfortunately, there's not much out there that would probably benefit him - his counts are too bad to do chemo and he never responded to chemo much in the first place. I am still hoping to get the low-dose MIBG treatment for him. Unfortunately, MSKCC's MIBG has been put on hold for awhile due to FDA formalities, (at least, that's the impression I am under).

Jay is coughing and needs me right now, so I will have to get back to this later.

Virginia

Monday, May 9, 2005 7:44 PM CDT

Hi Everyone!

It is good to be home! Jay was very weak and tired on the trip home Saturday (April 30), but perked up on Sunday somewhat. Saturday night, we got some crutches that had been in my parent's attic, and Jay was able to get around on them OK. In fact, he was feeling well enough to just use the crutches to steady himself while he walked using both legs. We went to the hospital on Monday, where he received platelets and needed blood, but because it was getting late, they wanted to wait until Tuesday to transfuse the blood. Tuesday, he got the blood, and Wednesday, he had an appointment with a regular pediatrician, to satisfy requirements for his new insurance. Each day, he tired out fairly easily, but by the time we got home, he would relax, eat, watch TV, talk on the phone, read, and in general feel OK.

Thursday, Jay was to have a very special day. Some people who had contacts, arranged for Jay to see a press screening of the new Star Wars movie (Episode 3: Revenge of the Sith). Jay is a HUGE Star Wars fan, and with the movie not coming out until May 19th, I was afraid that Jay might not be around to see it. Anyway, that day, Jay was feeling awful, but we still went to see the movie. It was all he could do to walk into the theater, but he was very excited and happy to see the movie. He thought it was awesome!

Jay was exhausted, weak and nauseous the whole day, and I was surprised that he was feeling so bad, considering it had only been two days since he had had blood. I noticed that Jay was starting to appear jaundiced; his skin had a yellow tone to it, and the whites of his eyes were yellowing. He had not looked like this earlier in the week. All that night I barely slept because it seemed to me that Jay was rapidly going downhill. He woke up early Friday morning vomiting, and as we had an appointment for blood that day, we just got dressed and went to the hospital early. Jay was in very bad shape when we arrived; very nauseous and in a lot of pain, he actually thought that he was goimg to die that day. He received dilaudid, nausea medicine, blood and platelets, and actually started to feel a lot better after a couple of hours. However, his blood levels were a big shock. The chemistries showed a huge jump in his liver functions just since Tuesday. They were:

Tuesday: AST - 88, ALT - 55, Bilirubin - 2.2, LDH - 1742
Friday: AST - 613, ALT - 410, Bilirubin - 8.7, LDH - 2644

The NP said that this indicated that Jay's liver was starting to shutdown. We weren't sure if it was medicine related (he is on a lot of medicine, some of which can be hard on the liver), or if it was the cancer progressing. We decided to take him off of Celebrex, Tarceva, and Temador, and then check his levels again on Monday. Also, we had an appointment on Tuesday (coming up) with hospice, but the nurse was afraid to wait that long. So, Friday night, the hospice nurse came out for the initial consultation visit.

Jay was feeling pretty good on Friday, and then he had a great time this weekend. He was feeling pretty good both days. We spent a very nice Mother's Day in Severna Park with my parents. Also, I noticed that he no longer had the yellow tint to his face, and the yellow in his eyes was almost gone.

Today, his blood levels were MUCH improved!
AST - 88, ALT - 160, Bilirubin - 2.3, LDH - 1937

I'm trying to make this quick, since I have to get off the computer soon. But, Jay had a few more nice things this week (in addition to the Star Wars movie). First, on Friday, he received a phone call from one of his favorite actors, Ewan McGregor. Jay was thrilled to talk Star Wars with him! Also, I have been promising Jay that I would get him a kitten for a long time. Since we had been in NY for so long, it wasn't possible. A family friend searched around and found the cutest little kitten and got her for Jay. He has been wanting a little kitten that would be his to cuddle and sleep with him. On Saturday, I brought her home and she is just what he wanted. Her name is Yoda.

We are still looking for something to keep Jay's cancer from progressing. I am checking out one last possibility, but it may not be likely to happen, with Jay's low platelet situation. I should hear something later in the week.

Thanks for checking in!
Virginia

Saturday, April 30, 2005 11:09 AM CDT

Hi Everyone,

This will be short. Jay was discharged from the hospital last Saturday. He is not feeling that well. He is weak, and has some new pain in his right knee, which is preventing him from walking or putting any weight on the leg. He has been transfusion dependant for a couple of months now. He needs blood and platelets every 2 or 3 days or so. That is because his bone marrow is full of disease. He also has some liver involvement (not sure exactly how much). The liver has been involved for several months now, but I think it is getting worse. He is having some belly pain.

We will be coming home to Maryland today. Jay is still taking oral chemo - Temador and Tarceva, plus a lot of other meds. Because of his extensive disease and count situation, there are not a whole lot of other options for him. BUT...... this does NOT mean that either of us are giving up the fight or that I have stopped the search for something to help him. That continues. But in the meantime, what we are doing here in NY, we can do in MD, and we both would rather be home.

Just to let you know: I will have extremely limited internet access at home (that means none, unless I am out to the library or at someone's house), so do not be surprised about the lack of updates or replies to emails. If there is anything urgent to report, I will definitely keep you updated then. Please give us a call, but try to understand that AT FIRST, we will probably not want any visitors, as we haven't been home in months, and we need to settle in. But, Jay will want to see his friends, so give us a call and we will arrange things around how he is feeling.

Sorry this is so jumbled, but I am trying to get this out fast before we leave.

Please sign the guestbook, we love to hear from everyone!

Virginia

Wednesday, April 20, 2005 11:26 PM CDT

Hi Everyone!

To pick up where I left off, Jay was released from the hospital on Monday April 4. However, he is back in again, I'll get to the details in a bit. After getting out on the 4th, Jay was feeling just OK, not great. He felt well enough on Wednesday (the 6th) to go out to a going away dinner for one of his Thursday night volunteer friends, and then on Thursday, after a long day in clinic getting blood, he went out with the other RMDH teenagers for a Teen's Night Out.

Friday (the 8th) we had a very busy day. Jay was scheduled for surgery to get a new mediport, and we had to be in clinic at 6:15 AM, and he was also scheduled for an MRI at 6:30 PM . Neither of us had gotten much sleep, so we started out the day being tired. I was hoping to have some time in the middle of the day to go back to RMDH for a nap, otherwise it was going to be a long day. Well, it turned out to be a long day. Jay's surgery was finished at 9:15 AM, and he was ready to leave the recovery room by about 10:00. However, a routine follow-up chest x-ray that checks to see that the mediport was in place, revealed a pneumothorax. Apparently his lung was nicked during the surgery which resulted in a slight (about 5 percent) collapse of the lung. (They tried to tell me that this is fairly common!). Anyway, that bought us some extra time in the recovery room, as well as an appointment for another x-ray at noon to see if there was any spontaneous resolve of the pneumothorax. Also, Jay had to start blowing into an incentive spirometer to try to reinflate the lung. Later Jay was taken to the PDH to receive another transfusion of blood. In the meantime, the noon x-ray was only slightly better, so they wanted to check again at 4:00 PM. So much for the nap! They said that if the lung did not reinflate enough, that they might need to insert a chest tube and that would have come with an overnight inpatient stay. Fortunately, the 4:00 x-ray showed a little more improvement, so that was OK, but now Jay was running a fever. Cultures were drawn, and they decided not to admit Jay for the fever, figuring it was just a reaction to the transfusion. Next, off we went to the MRI, and we were back at Ronald by 7:30 PM.

But....... Saturday night (or early Sunday morning), Jay started having a little chest pain. Additionally, he had had a slight trickly nosebleed on and off throughout the day, so AGAIN, off we were to Urgent Care. I just didn't want to take a chance that Jay's pneumothorax had gotten worse. Jay got a chest x-ray, which showed that things looked OK, but his platelets were low, so we knew that we would be there all night for the transfusion. Actually, waiting for the platelets to arrive from the blood bank took much longer than the actual transfusion. It was deja vu; another Saturday night/Sunday morning in Urgent Care with NO sleep. I kept looking at my watch counting down the hours until I figured we could go back to RMDH and sleep! Just when that time came, the resident on call, came by to tell us that Friday's cultures had grown, meaning that Jay had an infection, and would have to be admitted for an inpatient stay. Just what we didn't want to hear. So, it was about 11:00 AM Sunday before Jay was brought up to the floor to his room. Once again, after getting settled, we slept all day. Only this time, Jay was so wiped out, he didn't wake up until Monday.

Tuesday (the 12th), Jay's new mediport, was removed because of infection. So, once again, he has a temporary broviac, and he is not happy. The whole week was kind of a blur, just more of the same - platelet and blood transfusions nearly every other day, cultures taken, and visits from the infectous disease doctors, trying to find the right kind of antibiotics to fight this infection. They finally did determine that Jay has 2 different staph infections. They are staph bugs that you and I probably have on our bodies, but we don't get infected the way Jay does, because he has a weakened immune system. To someone in that position, these little bugs can be life-threatening, if not treated properly. The good news is that almost immediately, Jay's temperature returned to normal and has stayed normal ever since.

Earlier this week, Jay had an MRI of his spine. This was done to see if possibly the infection was lodged in his spine or spinal tumors. Fortunately (?) there was no sign of an infected abcess, just the usual neuroblastoma. Tomorrow, Jay is getting an MIBG scan. I'm sure he will light up like a Christmas tree.

Physically, Jay is weaker (mainly his legs) than he was even a few months ago. That is partly due to disease, but also partly due to the steroids that he is on. He has trouble walking long distances, but he will push himself at times, even saying that he needs to "practice" walking.

In the meantime, Jay is focused on earning his Boy Scout Eagle award. This is something that he has wanted since he was 7 years old. There are some people at RMDH that are helping him achieve this goal. They have also put him in touch with someone who is acting as counselor for Jay as he tries to complete the requirements that he needs. He meets with Jay a couple of times a week, and gives Jay "homework". Already Jay has completed one more merit badge. Jay is very excited about doing this, and is determined to earn the award. We are very thankful for everyone who is helping Jay.

Hopefully, Jay will be discharged soon. Right now, the big hold up is problems with his insurance covering the IV antibiotics that he will need at home. I am currently working on that.

Despite all of his disease, Jay has an amazing will to live, and he continues to maintain a positive attitude. That's not to say that he is not depressed (he is) or that he enjoys living this kind of life. He very much wants to be a normal teenager with a normal, boring teenage existance. But, he is determined to fight and do whatever it takes to live longer. It's tough, especially when he continues to see kids like himself lose their battles, even kids who had initially responded to treatment. But I think that his spirit and determination is what is still keeping him here. I am just happy to have him here with us still.

Thanks for checking in and please sign the guestbook!

Virginia

Monday, April 4, 2005 3:11 AM CDT

Hi Everyone!

This will be another brief update about a very bad weekend. Sadly, on Friday, our friend Amanda (Jay's Prom date from last year), lost her two year battle with neuroblastoma. Jay and I had become very close friends with Amanda and her mom Vicki over the last year or so since meeting them here in New York. We are still stunned by the loss. You can visit Amanda'a website at caringbridge.com/oh/amanda. There are some very cute Prom pictures in the photo section of both websites.

Jay and I spent all day Saturday, from 2 PM to 10 PM, in Urgent Care where Jay received 2 units of blood. His platelets were low, but they chose not to tranfuse at that time because they were still above 20. At around 2 or 3 AM on Sunday morning (Jay and I had not yet gone to bed), Jay had a nosebleed that wouldn't stop. So, we went off to Urgent Care again. I was expecting to be there just a few hours, then come back to RMDH and go to bed. Unfortunately, after receiving a bag of platelets, there was still a little trickle of blood coming from Jay's nose. Also, Jay's hemoglobin had dropped from 9.8 to 7.8 in just a few hours. Then, Jay suddenly spewed a lot of blood from his mouth all over. I think what happened was that blood had accumulated down the back of his throat, made him gag since he was partially asleep, and then he just threw it all up. He received a few more bags of platelets and some blood over the next few hours. Later, again, Jay threw up more blood. This time it was in the bucket, it was quite a lot and I am pretty sure it was all blood. This was enough for the doctors to decide that Jay needed to be admitted. In the meantime, they squirted Afrin in his nostrils to try to constrict the nasal blood vessels, and then both nostrils were packed with Afrin soaked gauze.

Sometime around 1:00 PM Jay was moved to a room on the pediatric floor. I had requested a private room, and luckily we were able to get one. The fellow on the floor came by and said that they would leave the gauze in Jay's nose overnight, then see how his counts were, and if everything was stable, perhaps he could be discharged on Monday (I was really pushing to get out of the hospital). After getting settled in, we both finally got some sleep. I woke up after a few hours and noticed that the gauze was gone from Jay's nose, and he was no longer bleeding. It turns out that Jay removed it himself! Anyway, I went back to sleep, and woke again at about midnight, having now slept all day. Jay was up too, and as neither of us had eaten AT ALL on Sunday, I went back to RMDH to gather a few things and find some food. It's now 4:00 AM and Jay is playing with some new Star Wars toys and writing in his journal and feeling OK. A CBC drawn earlier today, shows that the platelets and blood seem to be holding (platelets 117 and Hgb 9.0). I'm hoping that we can get back to sleep now and get back on a normal schedule so that Jay can be discharged. Jay's overall situation is still very serious, and as I have seen with Amanda, you never know what the day will bring. Things will never be back to normal, but I am grateful for each day that Jay is still here.

Virginia

Saturday, March 26, 2005 9:55 AM CST

Hi Everyone!

This is just a quick, short update. I will fill in the details later. I have been unable to get access to a computer for several days; right now I am sort of "sneaking" onto a hospital computer, so I need to be quick!

Jay was discharged from MSKCC last Friday, but on Wednesday, was admitted to New York-Presbyterian Hospital's Intensive Care Unit, via the ER. He will be discharged sometime today, and he is feeling GREAT (just a little weak)! He has been eating alot, and has more plans for when he gets out of here, than there are hours in the day!

I will detail things later, filling you in on the FUN week he had last week, starting with his birthday and also telling about his big screen movie debut! Then I'll tell you about his "scary" time this week. But for now, just know that he is feeling WONDERFUL!!!

Virginia

Sunday, March 13, 2005 0:00 AM CST

HAPPY 17th BIRTHDAY JAY!!!!!!!!!

Hi Everyone!

Jay is still in the hospital, but he is feeling good!! On Thursday a week ago (March 3), because Jay was still getting positive cultures, they took his mediport out and put in a temporary line. We were given no notice that this was going to happen, since it was a last minute decision and they were basically squeezing him into the surgical schedule, so Jay had not been NPO. Although Jay had told people that he had had a cup or so of water to drink that morning, no one seemed too concerned until they were just about to start the procedure. Jay was on the table, the surgeon was gloved and the instruments were ready, when the anesthesiologist asked again about when the last time Jay had eaten or drunk anything. It had been about 2 hours since having water, so the doctors were rethinking whether to start or postpone the procedure. When the surgeon asked the anesthesiologist what his schedule was like for later in the afternoon, Jay piped up "I can't do it at 8:00. I have people coming over." The doctors just looked at him and then Jay explained that some friends would be coming over to watch Survivor with him, so that would not be a good time for him. Everyone laughed (maybe you had to be there, but it was pretty funny).

Friday (March 4), Jay was moved to a private room, which is soooooo much better for us. We were both kind of nervous and suspicious about why we were able to have a private room (without even having to ask), but whatever the reason, we are just glad. The nurses were going to move Jay in his bed all the way down the hall to his new room, but Jay opted to WALK there. It was all the way to the other end of the pediatric floor! What a difference from before.

Jay is continuing to have positive cultures, meaning that he has an infection in his bloodstream somewhere. The good news is that he has been fever-free for over 10 days, and is feeling great. But, until they get a handle on what is causing the positive cultures and how to get rid of it, it looks like he will be inpatient for a while longer. On Sunday, he was taken down for a CT scan to see if they could find an area where maybe the infection has taken hold. Nothing of that sort (although plenty of cancer) showed up. Wednesday, Jay started a gallium scan to again, try to find an abcess or somewhere else in which the infection could be hiding. After an injection (similar to MIBG), he was scanned at intervals (4 hours, 24, and then 48 hours, I think), but again, nothing, other than cancer, showed up. So, he continues on antibiotics.

Also this past week, Jay started radiation again. Initially, it was to be just on his tailbone region, but Drs. Kushner and Wolden decided to radiate the whole pelvic area. He also continues to get periodic red blood and platelets transfusions.

Jay is feeling so good and nearly pain-free, that I am hoping that he will get out of the hospital soon. It seems such a shame to be stuck here when he could be out doing things and having fun. But, he has been really enjoying alot of visitors. In addition to family that came last week after his scary night (they have all gone home now), he has gotten visits from all his buddies from RMDH as well as other new friends. Thank you so much for taking time out for Jay!

Thank you also, for everyone who has signed the guestbook, and keeping tabs on us. We really appreciate it. Jay is feeling and looking so much better than he has in quite a long time! He is definitely not giving up the fight! He has a lot of living yet to do!!

Thursday, March 3, 2005 0:21 AM CST

Hi Everyone!

We had another great day today!!! After an uneventful night in which we both had a good night's sleep, Jay was up early and feeling pretty well. He ordered cereal for breakfast, and spent the morning hanging with me, Grandma Macleay and his dad and stepmother, who had all come up on Tuesday (Jeff came up later this afternoon). We also enjoyed visits from Amanda and her mom, and a few other fellow NB moms. Thanks for stopping by! Around noon, Jay went down to radiation, for the appointment that he missed on Monday due to the tremendous pain he was in. The radiation techs, remembering how Jay was on Monday had ordered a stretcher for Jay to be brought down in, figuring that it would be easier to transfer him to the radiation table from that, rather than a wheelchair. I guess they weren't expecting him to get out of bed unassisted, turn around in circles a few times to untangle his lines, and then hop up onto the gurney on his own. After raising the gurney head just right, Jay pulled out his book and proceeded to read on the trip down to radiation. Completely oblivious to everything else going on, absorbed in his book, as though this was just a routine thing. About 3 hours later he was brought back to the room after having had a nice nap during part of the treatment. What a difference from lately, to be so relaxed as to just fall asleep (without benefit of benedryl!)

Dr. Kushner stopped by, unfortunately while Jay was gone, and seemed very pleased that things were better. He mentioned that if Jay were released from the hospital by this weekend, we would return to clinic on Monday, and then perhaps Jay could start on a new medicine, one that I had discussed earlier with Dr. Cheung. I know we still have the rest of the week to go, but that is something to look forward to.

Later, Gene and Allison, two of RMDH's great Thursday night volunteers stopped by to visit. We were just getting ready to play Trivial Pursuit, so they joined in, and the eight of us had a good game going for a couple of hours. (Gene and Allison are too smart so I don't think we'll be letting them play with us again - they beat us all!)

Jay is now asking when he can get out of the hospital. He is anxious to go home and get to Books-A-Million and Hot Topic to pick out his birthday presents! It's hard to believe that 2 days ago Jay told me that he understood that he was "not getting out of there (the hospital)" and that he would be seeing Justin and Jesse D. and Uncle Rob in heaven.

I have been telling people that I was not making anything up just to get more visitors, prayers, and emails, when they come up and see him looking even better than when last they saw him at home!

I'm not sure what exactly is responsible for this miraculous turnaround; probably a combination of things. Jay is now on a PCA pump, although he hardly ever hits the button for a rescue. His steroids have been increased a little. Jay's color is so much better, the best I've seen in weeks. His lips are nice and red and his cheeks are pink. Even after transfusions a few weeks ago, he still looked very pale, so this is a very nice change.

I realize that things are still very serious, though. During rounds, after one of the doctors listened to his lungs with their stethoscope, I asked how he sounded. She shrugged and said, "OK". "Just OK?" "This side sounds better than the other". I didn't ask anymore questions in front of Jay, but I will tomorrow. I also recently noticed a huge bump on his tailbone area, which explains all of the pain in that region. Hopefully it can be radiated. In the meantime, he says that his shortness of breath is not as bad, so that is good too. On the positive side, Jay is bouncing back from this setback and ready to keep fighting. Who knows - maybe this next treatment could be the one to cure him, or at least buy some more time while we wait for the cure to come along. As long as there is life, there is hope.

Virginia

Wednesday, March 2, 2005 0:09 AM CST

Hi everyone!

The last two days have truly been a roller coaster, and right now we are flying high! The short version, as it is late and I am tired:

Monday evening Jay was admitted to the hospital with severe pain, nausea, fever, and hemoglobin of 5.8 (down from 8.3 on Friday). At 1:00 AM, for the very first time EVER, Jay initiated a conversation regarding his condition, and his acknowledgement that he was dying. We had a very sad, but sweet conversation, that I might share later. He then made a few short phone calls to a few close people just to say "I love you" and goodbye. I spent the rest of the night and morning sitting by his bed, as I held his hand, terrified that he already knew something that I was about to.

All day today, he has been very uncomfortable, feverish, and unable to even lift a leg without pain, appearing to sleep, but awake enough to know whenever the phone rang or someone came in, even though he had little recollection of it later. The simplest little thing - even talking - would exhaust him. Dr. Kushner came in and told me that Jay would eventually stop breathing and then he would peacefully die. He also wanted to talk about resuscitation issues should the need arise. I did not sign anything, but I did verbally agree to "Do Not Resuscitate". I don't think that Jay would want to spend the last few hours or days of his life with a tube down his throat. Anyway...... fast forward to 3:30 pm on Tuesday.

He suddenly fully opened his eyes, and was as good as I have seen him in the last 3 weeks! He has spent the rest of the night eating, watching movies, visiting with his visitors, moving on his own with little pain, eating, drinking, thinking about food, and all this with no fever. I have been trying to get him to go to bed for the last hour! He is amazing!!

I hope it lasts! Thank you to everyone who has been praying, emailing, calling, and signing the guestbook! It means a lot. I don't know how long Jay will feel this good, but we are enjoying the reprieve. For now we are taking things one day at a time.

Virginia

Sunday, February 27, 2005 11:45 AM CST

Hi Everybody!

Sorry about not posting sooner. Here's what has been going on. When we got to NY on the 13th, Jay was in a lot of pain. He couldn't even get up from the bed on his own. I would lift him up so he was standing on his feet, but he barely had the strength to stand on his own. On Monday, we went to clinic, where his counts were checked and he was given some IV dilaudid to help with the pain. He was also started back on Decadron (steroids) which he had only been completely off of for about 3 days. I was pretty sure that that was the reason why he was in so much pain, and that once back on, he would start to feel better. His platelets were in the low 30s, low, but high enough not to need a transfusion. I asked Dr. Kushner what the plan was, thinking that maybe they would scan that week. He said that he wanted to see how Tuesday went before deciding anything, although he did decide to discontinue the oral temozolomide and thalidomide. By Tuesday, Jay was feeling better, but all that was done the rest of the week was basically getting his counts checked. Fortunately, his platelets held on their own, and he didn't need any transfusions at all.

On Friday, the 18th, I talked to Dr. Kramer, who suggested starting oral topetecan. She also mentioned that she felt sure that a low-dose MIBG treatment could help Jay. The only problem was that currently, the MIBG protocol is only for age 18 and over. She said that since Jay is almost 17 (on March 13!), that they could try to get an exception for him. In the past, I have tended to shy away from MIBG therapy because of the need for a stem cell rescue and the fact that it severely affects the red blood and platelet counts for a long time. However, with the low-dose version, stem cells would not be an issue (Jay has none in reserve), and at this point, there aren't a whole lot of options out there for Jay.

Last week was like a roller coaster with Jay. Monday he was in so much pain, that even IV dilaudid at the clinic did not help him. His oral dose of dilaudid for home was increased slightly, as was his fentanyl patch. We left the clinic and Jay mostly slept the rest of the evening, waking off and on to take his pain medicine and to watch a little TV. Tuesday he felt much better, and on Wednesday he WALKED to the hospital from RMDH! Jay had an appointment for a radiation consult on Wednesday. His pain on Monday was mainly in his left leg, so Dr. Kushner thought that getting the leg radiated would help to alleviate the pain. Of course, on Wednesday when we met with Dr. Wolden, he was not having any pain.

The past few days have also been a mixed bag. Mostly, Jay has stayed in the room when we weren't at the hospital. Anyone who knows him from Ronald McDonald House knows that this is completely unlike him. He's usually right in the middle of things around here.

Jay will start radiation to his leg on Monday. Thankfully, he has not needed any transfusions since we have been here. His platelets are starting to rise (56 on Friday), but his hemoglobin is slowly dropping. He will probably need red blood this week. Right now I am very anxious to see if MIBG therapy will happen. I spoke with Dr. Cheung last week and he seemed optimistic that sometime in March the bureaucratic nonsense (my terminology, not his) restricting the age qualifiers might be lifted. I hope that Jay can hang in there until then.

This post has been kind of jumbled, as I have written it over the course of the last week or so. I will try to update later in the week with more details.

Virginia

Sunday, February 13, 2005 6:09 PM CST

Hi Everyone!

I know that I promised to update ASAP about what's been happening since we left NY on January 1, but, I have hardly been home, and I also have barely been able to get to a computer for more than a few minutes once or twice a week. I will still get to it, but for now, there is a more pressing issue. Jay and I returned to New York and RMDH today. About a week ago, he started having more intense pain, and Tuesday he developed a fever. Also, his platelets and hemoglobin have drastically fallen since two weeks ago. Our Maryland doctors consulted with Dr. Kushner and decided that we should get to NY right away and find out what's going on. They seem to feel that the cancer is rapidly progressing. Since Thursday, I have been giving Jay antibiotics intravenously every 6 hours, and now his fevers seem to have subsided. The pain is the worst part now. It's almost back to how it was in October, before he had ICE. Unfortunately, ICE is no longer an option, so our bag of tricks is getting pretty empty. We will know more after seeing Dr. Kushner tomorrow, but I am almost afraid of what I am going to hear. It is so hard seeing Jay go through all of this pain. He is such a good kid (for a teenager ;) ) and doesn't deserve to have this happening to him.

I will try to update now that I have computer access. The only problem is finding the time now.

Thursday, January 20, 2005 3:14 PM CST

Hi Everyone!

This is just a quick message to let everyone know that Jay and I are home now. He is feeling pretty good, despite continued progression of this nasty disease, and is continuing with his oral chemo.

We don't have telephone service yet (just our cell phones), so we do not have Internet at home. Right now I am at the public library using the computer, so I have to make this short. When I'm able to access the Internet for a longer period of time, I will fill everyone in on what's been going on, and about our trip to Florida. In the meantime, please be patient with the delay. We miss everyone in New York, but are happy to be home!

Thanks for checking in.

Virginia

Friday, December 31, 2004 2:18 PM CST

Hi Everyone!

I'm sorry it's been so long, but time has really flown here. To pick up where I left off, Jay was discharged from the hospital on Thanksgiving evening after receiving transfusions of blood and platelets. It was too late to get to Maryland for a family Thanksgiving, so instead, most of the family came to New York! Uncle Ken, Aunt Gina, the boys and Grandma Macleay drove up from Maryland to spend the holiday with us. Jay was very eager to get out of the hospital, and he had a ravenous appetite for real food. We missed RMDH's Thanksgiving feast, but we found a restaurant serving a traditional Thanksgiving dinner with turkey and all the trimmings. It was a fun weekend.

The following week was spent getting Jay's counts checked almost every other day. He was actually feeling a little weak and somewhat nauseous most of the week. From Thanksgiving until December 10, Jay had required 2 blood and 5 platelet transfusions. I was a bit concerned, because it had been over 2 weeks since he had gotten his stem cells back, and he should have started producing platelets and red cells on his own.

On December 8, Jay had an MIBG scan done to determine what effect the ICE chemo had. It was already apparent to me that the ICE had done a fantastic job no matter what was going on INSIDE Jay's body. By now, Jay was up and around, nearly pain free (although still wearing a fentanyl pain patch), and almost back to his old self! His biggest problem was numbness in his right foot which causes him to walk with a limp. He also is somewhat weaker than he was 6 months ago, but overall, there is a HUGE difference from October and most of November!

The MIBG scan showed essentially no change from the previous scan done a month earlier. One exception was that his left hip showed decreased activity, probably due to the radiation that he had received a few months ago. This was pretty good news!

Although the ICE did a great job for Jay, he couldn't really get anymore because his bone marrow has just had too much harsh chemo over the years. With options limited now, I had a consultation with Dr. Kushner, who suggested starting a combination of Celebrex, Thalidomide, and Temozolomide. Jay has had temozolomide before, in combination with irinotecan, but he has never had the other two drugs. I was also still considering the ABT-751 offered in Philadelphia. After getting in touch with Dr. Maris, who told me that there was a good chance that Jay could start on the Phase I ABT-751 trial, I had a tough decision to make. Both treatments are oral, and would enable us to go home for at least a month at a time. Although I had been very eager to try ABT for quite a while, my gut was leaning towards the thalidomide. After mulling it over during the weekend, I decided on the thalidomide combo (TTC) and got prescriptions to last a month.

Filling those prescriptions was another story. Because both the thalidomide and the temozolomide are so expensive (a one month supply of just one of the drugs was $11,000), the insurance company could only fill $1000 worth at a time. That meant that every 3 days I would have to get a new prescription. Thalidomide is a very tightly controlled chemo, and requires a survey to be done with the pharmaceutical company with each new prescription. In addition, it is not carried by a lot of pharmacies. So, having to do this every 3 days would be a big hassle. The following day, I talked to the insurance company, and was granted a waiver on the prescription limits, so now we can get a months worth of chemo filled at a time for the next year! Big relief!

We were able to go home to Maryland for Christmas. This was something that was important to Jay - he wanted to have a traditional Christmas with his grandparents and cousins. Jeff picked us up on Christmas Eve and we loaded the car to the brim with most of our stuff, in preparation for our impending permanent departure from New York. We spent Christmas with Grandma and Grandpa Macleay and all of the cousins were there. Jay really enjoyed the weekend. On Sunday, we had to take the train back to New York, as Jay was scheduled for surgery on Monday morning. The purpose of the surgery was to implant a new mediport. The old one had been removed in October when the doctors thought that he may have had a line infection. While he was under anesthesia, a bone marrow biopsy was also performed. The surgery took about 2 hours, but we spent 5 hours in the recovery room. An chest x-ray needed to be taken to ensure that the mediport was correctly in place. The first x-ray showed a possible pneumothorax, so a second x-ray needed to be done. The second film looked fine, but we had to wait for the team, which was in the OR, to read the x-rays and clear Jay for discharge. Jay was very hungry, impatient, and mad!

Jay has been taking these new chemo drugs now for almost 2 weeks, and seems to be tolerating it quite well so far. It has been 3 weeks since he has had a transfusion of any kind. The biggest problems right now are occassional pain in his back, numbness in his foot and pain in his hip (due to overextending himself). Not surprisingly, Jay has also been showing signs of major depression; mainly extreme crabbiness and impatience with everything and everybody. I made an appointment with a psychiatrist, with whom Jay has seen several times now, and Jay has just started taking an antidepressant. I wish I had taken him sooner, but he always said that he did not want to talk to anyone. He still refuses to talk about his cancer or treatment. Hopefully, he will start to feel better soon.

I want to get this posted while it is still 2004! I hope that everyone had a nice holiday and a Happy New Year! Thanks for checking in on us. We hope to be home soon!

Virginia

Sunday, November 21, 2004 4:50 PM CST

Jay has completed his second round of 17-AAG, his new chemo. Now he is doing scans to determine if this chemo has been effective or not. Usually scans are done every 3 months, but this is the FIFTH round of scans Jay has had in less than 8 months.

Physically Jay is not feeling well. He is in almost constant pain. The pain is mostly in his shoulders, which limits his arm movements, and also sometimes in his back and legs. He has a lot of trouble getting comfortable enough to get a good night's sleep. He tires easily and walks infrequently. When we are not at the hospital, he has been staying in our room at Ronald most of the time. There is a huge difference in him now than there was a month ago. I noticed that this change occured very soon after starting 17-AAG. I don't know if this is all chemo related, or just a coincidence. He now wears a fentanyl pain patch, and takes dilaudid and motrin (for muscle pain) almost around the clock.

What you have just finished reading was written (but not posted, sorry) almost 3 weeks ago. Where do I start? Well, the good news, is that Jay's pain does not seem to be as intense. He still wears a fentanyl patch, but he doesn't need any other pain meds. Big improvement! The bigger problem right now is that Jay feels weak and does not have any energy to do anything physical. This may be because of the drugs he is on, low hemaglobin counts, disease, or a combination of these factors.

I'm going to back up a couple of months and explain the treatments Jay has been on lately. In early September, after seeing progression occur during the gemcitabine/docetaxel protocol, Jay and I took a quick trip to Philadelphia to consult with Dr. Maris at Children's Hospital (CHOP). I was mainly interested in a Phase I trial offered there, ABT-751. We took Amtrak from NY to Philadelphia arriving the night before our appointment. After meeting with Dr. Maris, we walked from CHOP to the Philadelphia Ronald McDonald House to check-out, then walked to the train station. It was quite a hike, and one that Jay would NOT be able to do now, a mere 2 months later. I left Philadelphia ready to pack up and leave NYand go home and begin ABT which we could do at home. I was very excited and encouraged at this point. Unfortunately, a few days later, Dr. Maris informed me that the ABT study would not have an opening for another 6 weeks. Waiting for six weeks without treatment for an NB kid who has been steadily progressing was just not an option. I reluctantly enrolled Jay in a brand new study that MSKCC had offered us at the same time that I was considering ABT. This was a chemotherapy, 17-AAG. It was not neuroblastoma specific, but it had shown promise in adults. Jay was the first pediatric patient at MSK to receive it, and only the 4th or 5th ever to start anywhere, also the first NB patient ever, I think. So, this did not make me any more comfortable, but there weren't many options at this point.

A whole workup of scans were completed in a few extremely long and busy days in preparation for starting this new chemo. (Results of these scans done in late September, showed more disease progression since August.) This study was being administered by Dr. Trippett, not the NB team, so while Jay was on this new protocol, he was being followed by a whole new team. That was very different. This 17-AAG was given twice a week (Monday & Thursday) for 2 weeks, then one week off. On Day 1 of the first cycle, Jay had a peripheral line placed, where blood was drawn every hour for 8 hours. On Day 2, he had a bone marrow biopsy and more blood drawn. Day 3, more blood drawn. Pretty much each time he came in, he had a peripheral line placed. He was never told in advance about this, so he was very upset each time the nurse would come in to stick him. One day, he and his very nice nurse were even raising their voices with each other. Not fun for Jay at all.

Midway through the first cycle of the 17-AAG, Jay was admitted inpatient with a fever, which I have already detailed in previous journal entries.

After the second cycle of this new chemo, Jay had a whole set of scans done (just one month after the previous set of scans). Once again, results showed even more progression since September. The progression was mainly in the spinal tumors, which have been of primary concern over the last 6 months. Virtually every bone in Jay's body is full of cancer. This includes the vertebrae, in which the tumors are growing out of the vertebrae and into the little spaces between the vertebrae, and in towards the spinal cord. Now though, there is a little compression on the spinal cord, which could have been causing some of Jay's pain, and also numbness in his right foot. He is now on an oral steroid, which should alleviate the swelling.

With this latest progression, Jay was removed from the 17-AAG protocol and with few options left, it was decided to hit him with a round of high dose chemo. It had been 2 years since receiving high dose chemo, so the NB team chose to do a round of ICE (isofosamide/carboplatin/etoposide), which Jay had not received before. In addition, he was to begin a 10 day regimen of radiation to the thoracic area of his spine. Jay started the radiation and ICE on Monday, November 8. Tuesday night he was up about 3 times in the night throwing up. When we had to get up early on Wednesday to go to clinic for Day 3 of chemo, Jay asked to be admitted for the remainder of the week. He felt too weak and sick and in too much pain to get up every morning to go to clinic, then get up from his bed in the PDH to go back to RMDH. As it happened, that morning Jay ran a slight fever, so he was admitted inpatient. The following day he was in a very groggy stupor most of the day. He had been on a PCA pump for pain, as well as receiving it IV, and was on nausea meds. The pain meds were decreased, and Jay became much more alert over the next few days, although he did sleep quite a bit. He was discharged from the hospital on Saturday, but he still felt awful.

November 15 - 21

Monday, we thought that all that needed to be done was radiation (all this week) and a fingerstick to check blood counts. Well, we were awakened early by Ursula, the NB NP informing us that Jay was needed in clinic to receive his stem cells. This had been planned as part of the protocol with ICE, but no one had told me that. Apparently, Jay's body has had so much chemo over the last almost 3 years, that they didn't think that his bone marrow would have recovered from high dose chemo on its own. So, he was given back ALL of his stem cells that had been harvested in March 2003. Not having anymore stem cells in reserve severly limits future treatment options. The stem cells almost certainly had NB cells present, since Jay was harvested with plenty of cancer still in his body. But, as much disease as he has now, it really doesn't matter. On Thursday the 18th, Jay came into clinic with a fever, and was admitted again, less than a week after being discharged. We were expecting that at some point, because he is now neutropenic. So now we wait for Jay's ANC to get to .5; it is still at 0. In the meantime, Jay has not had a fever since Thursday, and he is feeling better than I have seen him feel in about 6 weeks. He is still nowhere near as strong as he was 2 months ago, but at least there is some improvement. In the last 2 weeks, Jay has received 8 blood and 5 platelet transfusions. Hopefully, his stem cells will graft soon and he will start producing RBC and platelets on his own. Once Jay's counts recover, he will be scanned to see if the ICE did any good. He will probably not be able to handle anymore of that chemo, so I'm not sure yet what the plan will be. Jay is hoping to be out of the hospital in time to go to Grandma and Grandpa's for Thanksgiving. I am going to do whatever I can to see that he gets to be where he wants that day.

It's been a very busy and stressfull time lately; much more than what I've written here, but I'm trying to get this posted before it turns into a novel! Thanks for checking in , and please sign the guestbook.

Virginia

Saturday, October 23, 2004 2:54 PM CDT

Hi Everyone,

Jay was discharged from the hospital Tuesday night. His fevers never really stopped. They would come down a bit, but then go back up, back and forth. Once his mediport was removed, and the fevers didn't stop, the docs realized that it probably was not an infected port. Then, they thought maybe he had a virus. They kept asking him who he has been around, if anyone has been sick, etc. The answer was always "no, he hasn't been around any sick people", "No cough, sniffles, etc." But, they swabbed him anyway, which didn't bother us too much, because as long as he was swabbed, it meant that he had to be in isolation until a negative culture came back, and that meant he got a private room. That was fine by us! Next, they thought that possibly the antibiotic, vancomycin, was causing the fever. They finally stopped it, although there was a lot of back and forth between Infectious Disease doctors, who wanted to continue the antibiotic for its full course, and the attending doctors, who wanted to stop it. I thought that it was worth a shot to stop the antibiotic, especially since it appeared that the fevers were not caused by an infection. I'm uncomfortable with giving antibiotics for no reason, especially such a heavy hitter like vanco. So, the vanco was stopped, and his temperature started heading down, although it still would spike at times. Since a few things had been ruled out as causing the fevers, my worst fear was that it may have been tumor related - the cancer rapidly progressing. Unfortunately, this was confirmed as a real possibility by one of the doctors who stopped by to check on Jay as we were leaving. But, Jay's doctors still want to wait a couple of weeks until after this current round of chemo, to scan. If things continue to get worse, though, he will scan earlier.

In the meantime, Jay was still experiencing quite a bit of pain. He was still wearing the fentanyl patch, and receiving rescues of IV dilaudid.

While he was still in the hospital, he was very happy to get a lot of visitors. Many people from RMDH came by, and on Thursday, almost the whole Thursday night volunteer group came by to watch Survivor with him. Uncle Ken, Aunt Gina and the boys came up from Maryland and spent Saturday and Sunday with Jay. He was thrilled, but he did tire pretty easily. We appreciated everyone taking the time to come see Jay.

Wednesday, Jay spent all day in bed at RMDH, but his temperature had returned to normal. He was just feeling kind of achy and not quite right. Thursday we went to clinic for chemo, and upon returning to RMDH, he climbed right back into bed. He did come down in the evening to hang out with the Thursday night volunteers and to watch Survivor. It was good to see him get out and mingle, like old times, but again, he did tire easily.

Jay has lost some weight, and we all know that he didn't have any to spare. This chemo is supressing his appetite, and in addition, the chemo and the fentanyl patch both cause fatigue, so Jay sleeps a lot and doesn't eat. So, my big jobs right now are to help control Jay's pain and put some weight back on him.

I want to hurry up and get this posted, so I'll get to more things later.

Virginia

Friday, October 15, 2004 5:38 PM CDT

Hi Everyone!

Jay is back in the hospital.......AGAIN. On Tuesday, Jay was going to be discharged, because the fever was under control and they had sort of identified what the infection was, enough to decide what antibiotic to send him home on. Unfortunately, between the time that the discharge procedure was started, and when we actually left the hospital, Jay was starting to have more pain. They figured that we could manage the pain at home. By the time we got back to RMDH, Jay was feeling pretty bad and went to bed. I had to wait for the delivery of IV antibiotics and supplies to arrive, as well as the visiting nurse to come "show" me how to administer the IV meds. I say "show" because, we've already been through this several times before. In fact, when the nurse arrived, I told her that I was already proficient with this, so what would have been a 3 hour visit, turned out to be only about 45 minutes, mostly doing paperwork. After just getting out of the hospital, the last thing I wanted was to spend my night being tied up with nurse visits, etc. The nurse was more than happy to have a shortened visit as well. Anyway, it was set up that I would give Jay his IV meds twice a day, 12 hours apart for the next 6 days.

The next day, Wednesday, we were scheduled to go to clinc for a check-up with Dr. Trippett. We got there early, and Jay, in addition to being febrile, was in a tremendous amout of pain, so much that he needed a wheelchair to get to the hospital. The pain was mostly centered on his lower back, right around the hip area where they do the bone marrow biopsies. He was given a bed in the PDH, given IV pain meds and hydration, and then we were to meet with the pain management team. It was decided to start Jay on a Fentanyl patch, which would be worn on his back or chest and it would continuously dispense pain meds over a period of 3 days, at which point we would change patches. In addition, he would continue with an oral dilaudid rescue as needed. We were in clinic all day, and by the time we got back to RMDH, Jay was running another fever.

Dr. Trippett wanted to see Jay again Thursday morning. We had planned to go home for the weekend, but back on Sunday, as Jay needed to be in clinic on Monday to start chemo again. So we go to clinic early just to get a CBC (Jay's pain was pretty much under control). Wouldn't you know, Jay had a pretty high fever, so they decided to admit him AGAIN! So much for spending the weekend at home. Jay had been so very excited to go home and see people, so you can imagine how extremely disappointed he was at being admitted again. They were concerned about these fevers and the source, since he had been on antibiotics for a week, including vancomycin, the Cadillac of antibiotics. They decided that the fevers, which were as high as 104 degrees, could have been caused by a line infection, so the plan was to remove Jay's mediport on Friday.

Today, Friday, Jay underwent a surgical procedure to remove the mediport, and replace it with a temporary broviac. As of now, he is still spiking a fever, but with the mediport out, hopefully, the fever will subside soon. He was transfused with 2 units of blood today as well. I'm not sure yet when, or if, the temporary central line will be replaced with another mediport. Also, as far as I know, he is still set to start his next round of chemo on Monday. I know that he will stay in the hospital at least over the weekend. Hopefully, he'll be out shortly afterwards.

I'll try to update again later.

Virginia

Sunday, October 10, 2004 9:54 PM CDT

Hi Everyone,

Jay is still in the hospital. To get to the details..... On Wednesday, Jay had gone out for the evening with a friend. When he returned, he seemed pretty tired, and after a little while I noticed that he didn't seem quite right. I took his temperature and it was 102.8. He was in bed under the covers, but was shivering. I immediately called the hospital, figuring that we would end up going to Urgent Care. Sure enough, by 10:30 pm we were in Urgent Care, where blood cultures were drawn and an antibiotic was started. After a long, miserable night, Jay was admitted and finally moved to a room at 5:00 am. Thursday Jay's fever had subsided, and it was decided to go ahead with his new chemo that he was originally supposed to get that day. (I'll go into this new treatment later).

On Friday morning, the doctors were ready to discharge Jay, but upon hearing that he had had a rough night, vomiting a little in the very early AM, they decided to keep him in and re-evaluate in the evening. Jay temperature was still normal, but to me, Jay wasn't himself. He slept all day, waking at times briefly, but not interested in anything, including food or TV (very unusual!). Late in the afternoon, "they" decided to discharge Jay because so far, nothing had grown from his blood cultures (even though it had not been 48 hours at this point). So, they came in, woke Jay up, encouraged him to walk once around the pediatric floor, and then deemed him ready to be discharged. Having had experience with this before, I was pretty sure that there were a line of kids in the PDH waiting to be admitted, and as the pediatric floor was full, they needed Jay's bed. I would have put up more of a fuss, but Jay actually wanted to go. So, we get back to RMDH and Jay almost immediately went to bed.

Guess what happened next? At 2:00 AM, we get a call from MSKCC telling us that the lab called with positive results from Jay's blood cultures, and that we need to come to Urgent Care right away. So, at 2:00 in the morning, I am pushing Jay in a wheelchair down the street 6 blocks to the hospital. I was not very happy to say the least, because now, we have to spend all night AGAIN in Urgent Care and hope that they will have a bed for Jay somewhere in the hospital. This time, it was 7:00 AM before we were moved to a room. There was no room on the pediatric floor, so Jay ended up on an adult floor, which wasn't too bad, except that it was a women's floor, and the staff kept referring to Jay as "she" and "her". That didn't sit too well with him. The good news is that we have a private room, which we didn't have before, and probably wouldn't have if we had gone to the pediatric floor. Having a private room really makes all the difference to us. Today they offered to move us down to Peds and we said no thanks.

Jay is on antibiotics again, and also is having pain in his upper back and sometimes his legs. He much prefers IV dilaudid to oral, so that is one benefit to being inpatient for him. Jay will probably be in the hospital for a few more days, and then I will give him the antibiotic (vancomycin) at home (RMDH) for the duration. We've been through this before, so it's nothing new.

I'll try to update later and fill everyone in on his latest treatment plan. In the meantime, please keep us in your thoughts; Jay is homesick and tired of this whole thing, and I am dealing with a bunch of other problems that I really shouldn't have to be worrying about at this time. Sorry for the rant.

Virginia

Friday, October 8, 2004 10:58 AM CDT

Hi Everybody,

I just wanted to let you know that Jay was admitted to the hospital late Wednesday night with a fever of 102.8. His fever has since gone down, back to normal, and he may be released either tonight or tomorrow. I am limited right now to the hospital computer, so I will update more later.

Saturday, September 25, 2004 3:04 PM CDT

Hi Everyone,

Sorry for the long time between updates, but I'm still having computer problems. And I'm having other problems to deal with (like cancer isn't enough), so I haven't really felt like doing anything. Sorry. So, here's what I started to write weeks ago, I will bring you up to date when I can.

I don't think that Jay was on TV at the press conference, but that's OK. We had a great time. We did attend the press conference where Tom Glavine spoke about the new partnership with MLB and the National Childhood Cancer Foundation. Baseball Commissioner Bud Selig was present via speakerphone. There was a lot of media and Jay did speak to a reporter, though not sure who. We met Tom Glavine, and also a couple of other families that were very instrumental in getting this whole thing started. Afterwards, we were taken down to the field where the Mets were having batting practice. We got to hang out in the dugout, where we met some other players. We also met Ozzie Smith who was there for the kickoff. Just before the game, the kids were introduced over the loudspeaker (as a group) on the field. It was quite an experience.

Last month, after completing 2 rounds of Gemcitabin/Docetaxel, Jay had his scans done. He was lucky enough to have his friend Darius, from the Maryland State Boychoir, come up for a few days. Darius accompanied us the hospital everyday and it was a great distraction for Jay. When Jay had his 2 hour long MIBG scan, Darius volunteered to sit with Jay. That was good for me, because the room is always so cold and the chair is uncomfortable (although I try not to complain because compared to what Jay goes through, it's nothing). Jay likes to sleep through the scan, so with the lights down it's hard to read. That leaves watching the computer screen of the scan as the only other thing to do, and I really hate to do that. It's way too easy to imagine every little thing that lights up as being worse or brighter than before, and since I'm not a nuclear medical professional, it's best not to look and let my imagination run wild. So, with Darius sitting with Jay, I was able to wait in the comfortable, warm waiting area where I could read my book and not worry about what the screen was showing.

Jay's CT scan was set for Monday of the following week. By that time, Darius had gone home, and we were now joined by my mother. After all these many months of it just being me and Jay here at RMDH, it was very nice, yet very different, having other people with us 2 weeks in a row. The following day, Jay started his third round of Gemcitabine and Docetaxel. This round went along just as smoothly as before. Jay still needed GCSF shots for three days, to boost his white blood cell counts, and before his counts finally rebounded, he had to receive 2 platelet transfusions and one transfusion of red blood over the course of a week. In addition, he received his pentamadine infusion, which he gets every other week.

The night before I was to take my mother to the train station to go home, I received a call from Dr. Wolden's office confirming an appointment for the following day. Well, as I was not aware that we had an appointment, and it was for the same time that I needed to put my mother on the train, and I was under the assumption that it was "just" a follow-up to the radiation that Jay had completed several weeks earlier, I decided to postpone the appointment. Imagine my horror, when 2 weeks later, Dr. Wolden tells me that Dr. Kushner requested her to see us based on Jay's scans that he had just had. Not the routine follow-up that I was expecting. So, apparently, the CT had shown that a tumor on the thoracic area of the spinal column was getting bigger. Not a lot bigger, but because of its location, enough to be concerned. However, Dr. Wolden said that we could go ahead with radiation, or wait. It wasn't that urgent. Since speaking to the other docs, my understanding is that since Jay basically has tumors all up and down his spinal column, this one tumor is not the only problem. The spine is a very delicate area and cannot take a lot of radiation. Jay has already had radiation on the lumbar area, and if this were the only spot, it might be wise to radiate immediately. Fortunately, Jay is not having any problems at all - motor, sensory, or bladder or bowel problems, so they felt it was OK to wait. In the meantime, I had been searching for other treatments and options for what to do next.

I want to hurry up and post something before people get too frustrated and stop checking in on us altogether. I will continue our update with my research into other options results and what the next step is very soon. Thanks for your patience.

Virginia

Tuesday, August 24, 2004 5:30 PM CDT

PRESS CONFERENCE UPDATE

The press conference is now scheduled for THURSDAY at 11:30 am. Don't know if or when it may appear on TV. Check out ESPN at that time anyway, maybe there will be a news break or maybe before the Mets game Thursday.



Hi Everyone!

I'll update more later, but I just wanted to give a heads up. Tomorrow (not sure what time), Jay MIGHT be seen on ESPN. Major League Baseball has teamed with the National Childhood Cancer Foundation (NCCF) to fundraise to help find a cure for childhood cancer. There will be a press conference tomorrow (Wednesday) that Jay will be attending. Tom Glavine, pitcher for the NY Mets, is one of the key players in this initiative, so I imagine that this may be done before or after the Mets game on Wednesday. The game will be shown on ESPN Wednesday night (?)

Thursday, August 12, 2004 2:56 PM CDT

ENTRY FOR MONDAY, AUGUST 9, 2004

Hi Everyone!

Since my last update, Jay has completed another round of the gemcitabine/docetaxel chemotherapy. He has endured this latest round with few side effects other than falling counts. A few weeks ago, his hair, which had been thinning due to the chemo, started to come out alltogether. This is the fourth or fifth time (I am losing count) that he has lost his hair to chemo, after having grown back fairly nicely. In the grand scheme of things, it is minor; but to a teenager, already dealing with some self-esteem issues, and trying to forget about cancer, and trying to just be "normal", it is another huge blow. For the first time, rather than just let nature take it's course, Jay asked me to shave his head. It was a very strange experience and made me feel very sad, especially knowing how unhappy Jay was. It's hard to explain.

Last week, as Jay's counts were falling, he needed to be back on the GCSF shots (Neupogen). So, once again, we had to go to the hospital for those. In fact, two of the last three weekends (which made for the third weekend in all), we had to go to the hospital just for the shots. I've already spoken to his insurance company once about covering the Neupogen as a pharmaceutical, instead of under major medical, but to no avail. I plan to make another phone call this week to speak to someone else. Jay had been invited on 2 different vacations, by 2 different people, which would have both been last week. Unfortunately, because of the neutropenia, his doctors did not think that he should go. If we could have had the Neupogen ourselves (as we had in the past) instead of needing "a healthcare professional" to administer it, he would have had a better chance of getting approval to go. So, where Jay once thought that he was going to have to choose between 2 trips, he now had none. Up until recently, Jay has thoroughly enjoyed being in New York, and when at home, could not wait to return. But, now, I guess some of the excitement has worn off, and he's realizing all of the things that he is missing out on, that his friends and cousins have been enjoying. This is the third full summer that he has spent in the city, and he would much rather be going on vacation or swimming at Grandma's beach. Needless to say, we are both a little bummed out by the fact that the summer is almost over.

In addition to the GCSF shots, Jay needed platelet transfusions twice last week. Dr. Kushner also decided to take him off of bactrum, because it tends to lower the blood counts, and put him on pentamadine instead. These are drugs that are supposed to prevent pneumonia in immune-compromised people. The pentamadine is given intravenously twice a week for two weeks, and then once every other week thereafter. This, instead of bactrum which was a pill taken twice a day three days a week. He will do his second week of the pentamadine "loading" this week.

Also this week, and Monday of next week, Jay will be getting tests done. Normally I don't worry or obsess about results because I am so used to hearing "stable" , which, at this point, is welcome news. However, since, March, every time Jay has scanned, there has been some progression or some area of extra concern, so now I am apprehensive. Still, I know that worrying will not help, because what is is, so I just try not to think about it. And actually, I am very good at doing that for the most part. I call it the ostrich approach, where I just stick my head in the sand and pretend that everything is OK. Whether that's good or bad, I don't know, but it works for me (and Jay) for now, at least.

A few weeks ago, Jay had an "emergency" MRI due to the severe pain that he has been experiencing during the early part of July. Thankfully, the pain went away after a week, and Jay has been feeling fine. However, the MRI did show a mass in his pelvic/spine area that may have caused the pain. This mass was present in the prior scan in June, but that report did not indicate the dimensions of the tumor. So, until the June scan can be reread, we don't know if the mass has grown since then. We also don't know why Jay was having pain then, and not now. There is so much that is not known with neuroblastoma.

Dr. Kushner has said that if the scans do not show any progression, that he would like Jay to continue with this gemcitabine/docetaxel chemo for a couple of more rounds. I got the feeling from him that he felt optimistic about these drugs, for a little while, anyway. We know that it won't cure Jay, but it may halt the progression enough that he can stabilize again until something else comes along. There are a couple of promising clinical trials, though still in Phase I, that are being offered in Philadelphia. I discussed them with Dr. Kushner as possibly something to try in the near future. The good thing about those treatments, is that it would enable us to be home for much longer periods of time. But, that is still down the road a little ways.

So anyway, keep a good thought for Jay during his scans. Please sign the guestbook!

Virginia

Wednesday, July 21, 2004 12:29 AM CDT

Sorry for the delay, I'm still having computer problems.

We had a nice 4th of July. The House took everyone to an area by the East River, where the NYPD provided a nice cookout. We had a good view of a spectacular fireworks display. This was the THIRD 4th of July that we spent in NY, and the third time that we watched the fireworks from that location. That made me stop to think about all of the holidays and birthdays that we have been up here and away from home. But, if we couldn't be home, then I guess this was the next best thing. I'm very grateful that Jay is able to be treated at Sloan Kettering, and that we are able to stay at the Ronald McDonald House, and that I am able to celebrate the 4th of July with Jay at all, period. It could always be worse.

Jay just didn't seem quite right that whole weekend. He was complaining of some numbness on his right buttock (the opposite hip that is being radiated), right where his wallet was in his back pocket. He stopped wearing the wallet, thinking that maybe it was irritating his bony behind. Monday was a holiday, so the clinic was closed. That night Jay asked for pain medicine because he was having a lot of pain in his leg, under the numb area. Tuesday he was in so much discomfort, that he couldn't even lay still on the radiation table. We had to go to clinic anyway for a CBC, so while there, Jay was given some IV pain meds. Afterwards, we went back to radiation, and he was able to get his treatment. Jay was also started on GCSF, to boost production of his white blood cells, because he was neutropenic, due to the chemo from the previous week.

Later that evening, Jay was feeling a little better, so he and I attended a kickoff event for Fred's Team. Fred's Team is a group of runners that run in the New York Marathon (among others) and raise money for pediatric cancer research at Memorial Sloan Kettering. Dr. Kushner, is part of this team. In addition to Jay, there were several other patients of Dr. Kushner's there. This was an opportunity for the runners to actually see some of the kids who will benefit from the research and treatment at MSKCC. In November 2002, after spending the day cheering the New York Marathon runners as they ran up 1st Avenue past MSKCC, Jay and I attended a post-Marathon dinner for the Fred's Team runners, held at The Plaza Hotel. Once again, Jay was there as a representative of an MSKCC pediatric cancer patient. We met some very nice people from all across the country who had just run the 26.2 mile race. Six months later, we were in London for Jay's Make-A-Wish. As we walked down the street near our hotel, Jay heard some Americans talking behind us. When he turned around to see who was talking, they said "Aren't you Jay?" It turns out, they were Fred's Team runners, in town for the London Marathon the following day. They had recognized him from the dinner at The Plaza six months earlier! We really hope to be able to come back to NY this November to cheer Fred's Team on!

The rest of the week, Jay was experiencing quite a bit of pain, and needed the wheelchair to go back and forth from the hospital. During the day, he would get a push of dilaudid through his port, which would get him through the radiation. At night, I would give him morphine every 4 to 6 hours. Each day, Jay would get IV pain meds, a shot of GCSF, and radiation. In addition, Wednesday and Friday he ended up getting platelet transfusions. It was a short week (with the Monday holiday), but it was a very hard week which seemed very long. To top it off, we had to go to the hospital on both Saturday and Sunday so that Jay could get his GCSF. Jay's insurance no longer covers prescription injectibles, but it will cover the medicine as part of major medical. Therefore, I could not get the GCSF and give Jay the shot as I had done many times in the past. Instead it had to be given as part of an office visit by a liscensed healthcare practitioner (after the past 2 ½ years of private duty nursing, I think I should qualify!) Not only does that seem very cost ineffective, but it was a very time consuming major pain in the neck for us having to get it done in clinic. Then, to have to get up early each day of the weekend (especially after such a hard week), was not fun for Jay. Saturday, Jay spent nearly all day in bed, except to go to the hospital for his shot, and one other short excursion, with me pushing him in the wheelchair, later in the afternoon. His pain had abated somewhat, but he was extremely tired and sleepy. By Sunday, although still a little tired and still nursing a numb buttock, Jay's pain had virtually disappeared. No one is sure what the source of this pain is; whether it is sciatica, or some effect of Jay's spinal tumors, or something else. The NB team placed an order for an MRI, and the earliest we could get is Saturday, July 24. Even though the pain is gone, they will still do the scan, to see if something is there, and also in case the pain returns.

Jay had his last radiation session on Thursday, and a CBC done on Friday, show that his counts are coming up. Tuesday he will start another round of the gemcitabine/docetaxel chemotherapy. When this cycle is over, he will be scanned again.

Last weekend we went to Six Flags amusement park with RMDH. Jay had a great time, and went on ALL of the rides.

Thanks for checking on us. Please sign the guestbook!

Virginia

Saturday, July 10, 2004 7:14 PM CDT

UPDATE THROUGH JULY 3, 2004

I wrote this update a week ago, but due to some computer problems, I was not able to post it right away. It takes me so long to get something written (I am not a good writer and I don't enjoy it that much), so I am going to post what I have so far, and then soon, update with what's been happening this last week.

I would like to start by thanking everyone for signing the guestbook. It is so nice to read everyone's entries, and to know that there are people out there who are checking up on us and care, even if we don't even know each other. We appreciate it so much!

OK, here's what's going on. Jay is getting radiation to his left hip. He had the consultation and simulation last week. This week he had the set-up on Tuesday and his first session was on Wednesday. He will have a total of 10 treatments, which will probably end on July 15. The idea is for the radiation to kill off the cancer cells in the hip area. Then the thinned out part on the acetabulum can grow stronger, sort of like a broken bone after it heals. Dr. Kushner did not want Jay to go so long without any type of treatment, other than the radiation, so he is also getting chemo. I did not want to have him get irinotecan and temozolomide again (not sure why, but I just don't feel really confident about continuing with those drugs.) Instead, he will be taking gemcitabine and docetaxel. He will be doing two or three cycles of these, concurrent with the radiation. Then another whole set of scans will be done to check the progress. Depending on those results, we will see what's next.

Last Tuesday, Jay started the chemo. It goes a little differently than the chemo he has had in the past. Day 1 he got gemcitabine. Day 8 he got both gemcitabine and docetaxel. Days 7, 8, and 9 he had to take dexamethasone to counteract some of the side effects of the docetaxel. He will skip a week, and then start the cycle all over again.

Jay has had a bad cough for a couple of weeks now. It was so bad that it was interfering with his sleep. We wouldn't be able to get to sleep for a long time, and then we would wake up off and on throughout the night and morning. For about a week or so, we would be like zombies during the day due to lack of sleep. However, we really couldn't figure out why Jay was coughing. Each time someone would listen to his chest, the lungs sounded clear as a bell, and he had no other symptoms. Last Sunday (June 27, chemo cycle Day 6), we spent the day in Central Park. Shortly after getting back, I noticed that he felt very hot. Long story short, we ended up in Urgent Care a few hours later with a 102 degree temperature. A chest X-ray came out negative, but they gave Jay an IV antibiotic as a precaution, thinking that maybe he had walking pneumonia. He was also given azithromycin to take over the next 4 days. We left Urgent Care at 3:30 AM and were told to come back to clinic later that morning. Thankfully, they decided that it wasn't pneumonia, but more likely an allergy or something that was causing the cough. They put him on Claritin, which hasn't seemed to stop the coughing, but it lessens it enough that we are sleeping much better. Every little bit helps!

Friday morning (July 2), Jay woke up with a bloody nose. His platelet count had been falling due to the chemo, so he received a platelet transfusion Friday afternoon. We expect his counts to get even worse, before coming back up.

Thanks for checking in. I will update again soon.

Virginia

Wednesday, June 23, 2004 10:34 PM CDT

Just when you think you have things figured out, they change. Last week we were preparing to come home for about 5 days before starting round 4 of arsenic. I was on the Internet making plans for our way home, when Jay came up from the lobby with a phone message from Dr. Kushner, requesting us to go into clinic the next day. Dr. K had also called my parents home in MD looking for me. Well, you know the news is not going to be good when the doctor himself calls asking you to come to clinic, especially since he knew that we were planning to go home, AND when he calls a second number looking for me. As it was 6:30 PM and the office was closed by the time I tried to call back, I had the rest of the evening and night to worry about just how bad the news was...... or, to enjoy my ignorant bliss, however way you want to look at it. Throughout the night I looked at it both ways. Needless to say, our plans for coming home were changed.

To get to the point, since Jay's last scans in April, there has been disease progression, mainly in tumors on the spine. Specifically:

Bone Scan - No significant change (since April)
MIBG scan - No significant change, which means stable "widespread osseous metastases".
CT scan (head and orbits) - No significant change in the metastatic disease
VMA/HMA Urine markers - in the 70s. Previously had been as low as the low 30s. Normal is <10.
Bone Marrows - biopsy and aspirates still positive, maybe even a little more than previously.

To summarize a very lengthy report, both the MRI and the CT of the chest, abdomen, and pelvis show growth of tumors pretty much all along the spinal vertebrae and extending into the spinal column in several places.

In addition, another area of concern is Jay's left hip. The cancer has eaten away the hip to the point where there is a potential for impending fracture at that site. To get an idea of where the problem is, cup one hand; make a fist with the other hand. Set your fist into your cupped hand. This is how the hip joint looks - the head of your femur (your fist) sits inside the acetabulum (your cupped hand). It is Jay's left acetabulum that has thinned to where it is very fragile.

So, because of the disease progression, Jay has been taken off of the arsenic trioxide trial. At the time that I spoke with Dr. Kramer and Dr. Kushner, a new plan had not yet been finalized. More than likely, Jay will get some type of different chemotherapy, in addition to definite radiation to the hip. When I left the clinic and went back to Ronald, I called Dr. Wolden's office to make an appointment for the radiation consultation. I was told that the earliest available appointment was for the following week, so I took it. Not an hour later, I received a call saying that Dr. Wolden would like to see Jay the next day! It kind of makes me worry, but I certainly can't complain about the prompt, personal attention from the doctors!

The good news is that even with all of this disease and the progression, Jay feels pretty good. And considering the tumors on his spine, going into the spinal canal, he is not experiencing any problems with sensation, motor abilities, or anything else. That is very good! The bad news (for Jay) is that he has to curtail his physical activities. He is not allowed to run, or climb (he loves to climb trees and rocks in Central Park), or horse around with his friends. This is to minimize any chance of fracturing the hip. Jay feels fine, so sometimes it is hard for him to remember that he has to be careful.

I'll update later when we know what the new plan is. Thanks for checking in, and
PLEASE SIGN THE GUESTBOOK!!!!!!!

Virginia

Wednesday, June 16, 2004 3:08 PM CDT

Wow! Time has really gone by, sorry for the delay in an update. Since my last update, we were able to get home for about 7 days before going to Ohio. It was a most UNRELAXING and FRUSTRATING time at home. About the only good part was seeing some of our friends and family, although, as usual, visits were short and we were unable to see everyone that we wanted to see. The problem with our schedule is that we are home long enough to realize all that needs to be done on the home front, but not there long enough to do much about it. I won't go into all of the gory details about everything that went wrong. Suffice it to say, it was almost a relief to leave when we did.

On Thursday (May 20), Jay and I set off for Ohio. It was a very nice drive through some pretty areas. With stopping a couple of times, it took us about 8 hours. I actually enjoyed the drive and was very glad that I had decided to drive rather than fly, as it was much more relaxing. We really enjoyed spending time with Amanda and her family before the Prom. The day of the Prom was busy. A local news cast was doing a story about Amanda and the Prom. A camera followed her around pretty much most of the day as she was getting her nails and hair done. They interviewed Amanda, her mom, and Jay, and filmed footage of getting into the limo on the way to dinner, as well as at the Prom. They both looked so good! I will post pictures soon. Jay and Amanda left the Prom a little early and came home to change before the after prom party. However, once at home, I think all of the excitement finally caught up to them, because they kind of fell asleep and decided to skip the party. They both seemed to have had a great time though!


Sunday, Jay and I needed to get to NY, as his 3rd round of arsenic was to start on Monday, May 23. Originally, I had booked a commercial flight from Ohio to NY for Sunday. It was quite a hassle because I was trying to find a flight over the Internet, and with our phone service at home off, I was making many trips to the public library to use the their computers. It was tough trying to find a cheap fare. I was checking every airport near NYC as well as NJ, until I finally found something not too expensive. Then there was the issue of getting from the airport into NYC, another hassle. Well, Friday morning, while in OH, I received phone calls from both Jennifer C., an NB mom I had met in NY, and also from Corporate Angel Network. Jennifer had called her contact from CAN for me, and in no time, a private flight was arranged for me and Jay to get to NY Sunday morning. It was all such a whirlwind! I quickly canceled our commercial tickets, and Sunday morning we left Columbus, bound for NY. It was amazing. We were flying on a private flight with NetJets, we walked right onto the plane from the tarmac, bypassing the whole airport and all the security hoopla. Same when we landed. We just walked from the plane into the NetJets building, where a car service was waiting to take us into the city, right to the door of RMDH. In addition, there was some sort of media story about Corporate Angel Network and they wanted to use the story of Jay being in Ohio for the prom, and then flying with CAN back to NY for treatment. There was a news camera and reporter waiting for us at the NetJets hangar when we arrived. They interviewed both Jay and Amanda. There was also a press release sent out about the story. If you do a google search you might find it.

As if that all wasn't enough excitement, we were fortunate enough to be able to attend the red carpet premiere of "Harry Potter and the Prisoner of Azkaban" which was being held at Radio City Music Hall in New York that Sunday afternoon. We had met Paula, an associate producer of HP, in London last year on Jay's Make-A-Wish trip, when she had taken an entire day from her busy, busy schedule to show us around the set. She very generously offered us tickets to the event. It was very exciting not only to see this much awaited movie two weeks before it was released in theaters, but also to be surrounded by all of the hoopla. Most of the actors from the movie were there, as well as other celebrities (I was sitting directly behind Christie Brinkley and her family). But what was most important to me was that Jay was able to see the movie. When we were in London last year visiting the set and watching the filming, I couldn't help but worry that Jay may not be around to see the movie when it was released (a whole 14 months away at that point). You never know with neuroblastoma; things change so quickly. Even kids who respond well to the treatment (unlike Jay) and receive clear scans, can suddenly relapse and be gone in months. We have seen it happen to way too many kids. So, anyway, I was just SO happy that Jay was there, enjoying the movie. That was definitely the best part!

After all of the frenzy of activities, it was actually nice to finally settle into the more calm and familiar routine of what has become our "normal" life. On Monday, May 24, Jay started his 3rd round of the arsenic trioxide clinical trial. Jay had a cough and a mild case of the sniffles, so the clinic staff decided to do a nasal swab to determine if he had a virus. He was considered a possible infection risk, and had to be in isolation (again!!!!!) until the cultures came back (about 5 days). That meant that as long as he was in the clinic, he was in an isolation room, staff had to gown and glove up, he could not go to the teen room or playroom or interact with other kids. We could still stay at Ronald (thank goodness!!), but while there, he had to stay in his room, and again, no interaction with other kids. Also, upon leaving or entering the hospital or RMDH, he had to wear a mask. Well, you can imagine how well that went over with Mr. Social Butterfly Jay. We were pretty sure that it was just some kind of allergy or something NOT contagious, and when the cultures came back negative, it was a relief. The second week of arsenic went smoothly, but because Monday was a holiday, his treatment was Tuesday through Saturday.

It is part of the arsenic trioxide protocol to scan after three rounds, so last week and the early part of this week, Jay had his tests done. The schedule was kind of weird, Friday night he had an MRI done, and we didn't leave the hospital until after 9:00 PM. Earlier in the day, he had the MIBG scan and bone marrow biopsy (his favorite, but, hey, whatever makes him happy.....), so it was a 12 hour day at the hospital. We thought that that was late until Monday. His CT scan was set for 7:30 PM, but we didn't leave the hospital until 10:15 PM! So, pending decent results, Jay will receive a total of three more rounds of arsenic, which should take us through the summer. We are hoping to go home for a few days before this next round starts on Monday.

We have had some fun times over the last few weeks. We went to a Yankee game where we were given VIP treatment, and had terrific seats, right behind the backstop. They were playing the Orioles (our favorite team) and even though we were guests of the Yankees, Jay was cheering the Orioles on (much to the displeasure of some Yankee fans sitting near us, especially when Jay was given a foul ball). The highlight for him was meeting one of the Oriole coaches, Elrod Hendricks, who very graciously came over to speak to Jay. We also went to Hershey Park with RMDH. Jay went on every ride that he could. Jay's Uncle Steve from South Dakota came for a short visit, and we also were able to visit with our HP friend Paula and her family while they were still in town. So, it is no wonder that time has just flown by.

I will update again very soon with results of Jay's scans. Please don't forget to sign the guestbook!

Virginia

Monday, May 10, 2004 11:05 PM CDT

Hi Everyone!

To start, I'll just let you all know that the leg pain and fevers that Jay was experiencing several weeks ago, stopped , after a week, just as suddenly as it started. The results of the tests that were run in April because of all that, showed no change from March's scans. Dr. Wolden, the radiologist even said that, judging from the x-rays and scans, there did not seem to be any reason to radiate Jay's left leg at this time. So, while that was good news, it remains a mystery as to what precipitated the fevers and all of the pain.


However, there's always something! On top of everything else, Jay came down with shingles. About three weeks ago, Jay noticed a spot on his abdoman. He thought it was a bug bite because the day before, he had been in Central Park with friends, sitting on the grass and just hanging out. While we were in clinic, Jay showed the spot to the doctor, who agreed that it was probably just a bug bite. It didn't itch and it didn't hurt, so we just forgot about it. Five days later, while we were in clinic getting ready to start the next round of arsenic, Jay showed it to the nurse practitioner because it looked scabbed over. She immediately called someone else in to look at it because she thought it was shingles. In minutes, we had two doctors and three nurses examining Jay. They were pretty sure it was shingles so we were essentially on lockdown in the exam room for the next 4 hours. Jay received his arsenic treatment there, then he gowned and gloved up to go for his last day of radiation. He was given the last radiation appointment of the day because of the isolation restriction. From there we had to rush to 53rd St (about 15 blocks away) to go to a dermatologist to get a scraping of the spot so that they could positively identify what it was. Arrangements were made for us to spend the next couple of days at the Helmsley Medical Tower.

Jay had to go to Urgent Care that whole week for his arsenic treatment. I don't think we left there any earlier than 6:00 pm each day, and sometimes even later. After the first few days, we were day-to-day at the Helmsley. It was kind of a hassle, because we had to go to Urgent Care, someone had to check the affected area, and because it wasn't scabbed over yet, the social worker needed to extend our stay at the hotel. The hotel was pretty much booked up, so we had change rooms twice. Once it was determined that Jay still needed to be in isolation, I had to rush back, pack up, check out of one room and check into another. Other than that, and the fact that Jay missed his friends from RMDH, it wasn't too bad. Twice, we actually had a one bedroom suite because that was the only room available, so we were quite comfortable.

We had to go back to Urgent Care on Saturday to see if the isolation restriction could be lifted. Unfortunately, the one remaining spot was not quite dried up, so we spent the weekend at the hotel. On Monday, we returned for Jay's second week of Round 2 of arsenic. And, once again, still not ready to return to RMDH. However, the Helmsley was completely out of rooms for Monday night, and Diane, the social worker had no luck finding a room at other hotels in the area. Jay joked around and told everyone that we were now homeless and would have to spend the night on the street. I quickly reminded him that HE was homeless, because I didn't have shingles and I could go back to Ronald! In desperation, I called Jay's buddy who works at RMDH and asked if he could take Jay home with him for the night. He was more than happy to do that, and they ended up having a wonderful time watching movies and eating pizza and snacks. The next day Jay was finally released from the isolation restriction, although we still had to spend all day in Urgent Care while he received his treatment. The rest of the week we were finally able to be treated in the clinic, and things went pretty smoothly. On Monday, though, Jay's EKG came up abnormal. He had been needing the potassium bolus all week, so it was decided to give Jay the bolus, then repeat the EKG. If it was normal, then they would proceed with the arsenic, if not then he would not have continued with the arsenic (not sure if that would have been for this round or forever). Anyway, thankfully, after getting potassium, his EKG came out normal. That was the only major glitch, other than the shingles, of course!

So now he has completed 2 rounds of arsenic trioxide, and we are preparing to have a little bit of a break before Round 3 starts on May 24. Next on Jay's schedule though is a Prom. We met a girl here in NY named Amanda. She is in 9th grade and has neuroblastoma, too, and she and Jay became friends. She lives in Ohio, and her high school gave her permission to attend the Senior Prom, and she invited Jay! So, the details and logistics have not been worked out yet, but somehow or another I will get Jay there. I think that they will have fun and it will be a good experience for him. We are going to be in a time crunch though, as the Prom is on May 22 and we need to be back in NY the next day in time to start treatment on the 24th!

In closing, I would like to say Happy Mother's Day to everyone out there. Especially to my mother who has been a fantastic role model. When she and my dad were taking care of my brother during his battle with terminal cancer, little did I know that less than 2 years later, I would be doing the same with my son during his fight against cancer. I only hope that I am doing as good of a job as my parents did.

Thanks for checking in.

Virginia

Monday, April 19, 2004 3:01 PM CDT

Hi Everyone!

After all of our meetings and discussions with the NB team and Dr. Wolden, the radiologist, we started on our next phase of treatment. On Monday (the 29th) Jay had his simulation in radiology. During this appointment, the radiation staff used X-rays and scans to mark exactly the right areas to aim the radiation beams. Five permanent freckle-sized tattoos were made on Jay's abdomen to mark the spots to be treated.

That day Jay also started the arsenic trioxide protocol. The first order of business was to get blood drawn and have his electrolytes tested. The arsenic treatment tends to decrease the amount of potassium and magnesium in the body, so each day that he gets the arsenic infusion, the electrolyte levels need to be checked. If they are not at a certain level, then Jay would need to get a bolus with potassium (K) and magnesium (Mg). This would add an extra couple of hours onto our clinic day. In addition, once a week, Jay needs to go for an EKG. That first week Jay's electrolytes were high enough to start the infusion without getting a bolus. However, Tuesday, Wednesday, and Thursday, he did get a bolus. His levels were actually within normal limits, but because of the treatment, the protocol requires that the K and Mg need to be above a certain limit, on the high side of normal. The first week of arsenic treatment went very smoothly.

But then came the weekend........

Saturday morning, Jay asked for a pain pill for pain in his leg and his back. This was really the first time that his pain had been bad enough for him to ask for medicine. As the weekend went on, his pain seemed to increase, as did his requests for dilaudid. Monday we were back at the clinic for more arsenic, Week 2 of Round 1. In addition, the morning was spent getting labs drawn, another EKG, and Set-Up in Radiation. Jay's pain was only slightly under control. He was taking pain meds about every 4 hours, and he just wasn't up to his usual smiling self. Later that night he was in such excruciating pain and running a fever (which he had off and on for the last day or two), so I took him to Urgent Care. They drew blood cultures to see if an infection could have been the source of the fevers, and then gave Jay some IV dilaudid. This seemed to give him some comfort, and at midnight, after only TWO hours in Urgent Care (this has to be a record), we went back to Ronald McDonald. The rest of the week was a bit more hectic and definitely more troubling than the previous week. His first radiation treatment was on Tuesday, preceded by blood draws, and followed by the arsenic infusion. This time, Jay did not need a bolus all week, but after discussion with the NB team, the arsenic was infused over a period of 2 hours instead of one hour. Jay was in so much discomfort and pain, that he needed to be pushed in a wheelchair to and from the hospital, as well as to and from all of his treatments within the hospital. Jay also was getting very itchy, over the last few days. The doctors felt that Jay was developing an allergy to dilaudid. So, the dilaudid was discontinued, and we tried another pain med. Each day the pain was never under much control, so a new drug was tried. I think I was in the pharmacy every day that week getting prescriptions filled. Finally, Friday, Jay seemed to be a bit more comfortable. He had started an immediate release morphine the day before, and Friday we added a longer lasting type of morphine. We still didn't know what was causing Jay's fevers; nothing had grown from the blood cultures that were drawn on Monday in Urgent Care.

I had an uneasy feeling that perhaps the cancer was progressing. With the sudden terrible pain, and the unexplained fevers, it was eerily similar to the symptoms Jay had prior to being diagnosed. The NB team decided to have scans run again. So, Thursday after the arsenic treatment, Jay had an X-ray to see what was going on with his leg. A bone scan and MIBG scan were set up for the following week.

Jay had been on morphine around the clock since Thursday, and by Saturday the fevers had stopped, and he was almost back to his old self. On Easter Sunday, Jay didn't even want to take a pain pill. The House provided a wonderful Easter meal and Jay finally had his appetite back. This past week Jay continued getting radiation to the tumor on his spine, and he also had his scans. So far, no official results are back yet. But, Jay is feeling pretty good. The only problem he has now is occasional nausea and diarrhea, which is a side effect from the radiation. Unfortunately, it seems to be worse after he eats, so I've had a hard time getting him to eat.

This week should be fairly easy. He will continue with radiation, and, depending on results of the scans, he will start Round 2 of the arsenic protocol next week (April 25).

Thanks for checking in and don't forget to sign the guestbook!

Virginia

Monday, April 5, 2004 0:39 AM CDT

Hi Everyone!

Jay had a great birthday party! Originally, he just wanted to just get together with family, his cousins and grandparents, and have a low key celebration with cake (made by Grandma, of course!). But, with our New York schedule so up in the air, I didn't even plan anything until the last minute, at which point, Jay decided to invite a few friends for the day. So, Jay called his closest buddies, and, with barely 2 days notice, each one of them came to help Jay celebrate on Saturday the 13th.. These good friends, Tim, Darrius, Richard and Mike had all, at one time or another, made the trip to New York (some more than once) to visit Jay while we had been there for those many months. And throughout our long stay in NY, they had all kept in close contact with Jay with cards, letters, and phone calls. Jay is very lucky to have such good friends. At one point, the boys had a football game going with the cousins (Nick, Michael & Katie), Jeff, and Uncle Ken. It was a great day! Thank you everyone who helped make his birthday special and thank you to everyone who remembered him with cards and messages!

The following day, Jay and I were on a train back to New York for scans and consultations with the doctors to determine our next phase of treatment. Once again, Jay was overjoyed to be back at Ronald McDonald House, and once again, Jay's buddies were there to welcome him back!

On Monday (March 15th) we had to be up very early for an 8:30 am CT scan. Jay had to finish drinking a contrast solution by 7:30 am, but, since we had just come in from out of town, we didn't have the contrast. So off we were to the clinic by 7:00 (waaaay too early for us!). Even though we got to clinic before some of the staff did, we still didn't get to CT until 10:00. We had to get the contrast, blood work done, examination by the doctor, and get orders to access the mediport. Since none of this is under my control, I've learned to just go with the flow. We may have had an 8:30 appointment in CT, but, we get there when we get there. Then, Jay's bone marrow biopsy was scheduled for 1:30, but it was closer to 3:00 before it was actually done. Again, waiting is not such a big deal usually, but because of sedation, Jay could not eat or drink anything (except for the contrast) until after it was over. So, it was close to 5:00 before Jay ate that day.

Tuesday was supposed to be an easy day - just the injection of the radioactive tracer needed for Wednesday's MIBG scan. However, we got a call from the PDH Tuesday morning requesting us to come in for an MRI prior to the MIBG injection. Once at the PDH, Dr. Modak explained that the CT showed something new at the base of Jay's spine. They wanted an MRI to get a clearer idea of what and exactly where it was. They also called in a neurologist to examine Jay. He did a few reflex and strength tests, just to figure out if this tumor was causing any damage yet. As far as I could tell, Jay didn't appear to have any adverse reactions or symptoms. All in all, it was a long and rather upsetting day. We didn't get back to RMDH until 7:30 that night.

Wednesday, after the MIBG scan, I went to the clinic to talk to Dr. Modak about the MRI. It showed new growth on an existing tumor at the base of Jay's spine. Although I knew that Jay had disease along his spine, I was under the mistaken impression that it was more like a lesion, rather than a solid tumor. At any rate, it was a fairly small tumor, and the new growth is also very small. However, it is starting to grow into the spinal canal, below where the spinal cord ends and not touching the cord, but it is growing around nerves which come out from the spinal cord. It's possible that the pain that Jay was having off and on in his left thigh could be due to nerve irritation from the tumor. At least that's what I'm hoping it is. And other than the occasional pain, Jay is not showing any other symptoms. The doctors were concerned about any bowel and bladder problems, because the nerves in that area were near the tumor, but thankfully, Jay has not had any problems of that sort.

Since then, I have met with Dr. Cheung twice (and I think that is 2 times more than I ever spoke one-on-one with him in the whole first 2 YEARS we were in NY!). We discussed what type of treatment to try next, and he recommended the arsenic trioxide clinical trial. It is a Phase 2 trial, and is usually pretty easy on the patients. There should be very few side effects, and hopefully, his hair will grow back during the treatment. The arsenic treatment is done in cycles of 2 weeks of treatment followed by 2 weeks off. At the end of 3 cycles, scans will be done, and if there is no progression or adverse reactions, a total of 6 cycles will be done.

There are other options out there at other locations across the country, but most of them are Phase I, others are chemo type trials (and Jay has really not had much response to chemo), and still others are fairly invasive and would likely beat him down with depleted counts and that sort of thing. All of these other options are experimental, as is the arsenic trial, but when the conventional treatments aren't working, we have to try whatever we can. None of us is ready to give up yet, but as Dr. Cheung said during the dreaded "quality of life" speech, at this point "we are looking for something to make things easier on Jay, not to cure him." My hope is to keep Jay's disease stable at least, while keeping him strong and happy, until hopefully some other treatment that can cure him will come along.

So, the plan now is to start radiation on the tumor on Jay's spine, and also to start the arsenic trioxide protocol. What was supposed to be a 5 day trip to New York has turned into 3 weeks so far. We'll be here at least another 5 weeks before coming back to Maryland. In the meantime, Jay is having a ball up here with everyone. He's been dubbed by several different people as "The Mayor of Ronald McDonald House"!

I actually started this update 2 weeks ago, and just wanted to get it posted right away. I will update again later this week and tell how the new treatment is going.

Thanks for checking in and please sign the guestbook. Also, check back later this week.

Virginia

Saturday, March 13, 2004 9:05 AM CST

HAPPY 16th BIRTHDAY JAY!!!!!

Jay is looking forward to spending the day with family and a few friends. As he says, "it's a get together, not a party". He is soooo excited about his birthday!!

Tomorrow we leave for New York for scans and possibly arsenic treatment. I'm still not exactly sure what to do next

Thursday, March 4, 2004 1:18 PM CST

Hi Everyone!

Again, too much time has gone by since my last update, so I hope that I can catch everyone up on what's been happening. Due to the low blood count situation after Jay's last chemo, it was decided to wait until after scanning to determine the next course of treatment. However, his scans in New York were not scheduled to be until mid-January, and I was a little uncomfortable with waiting for over a month with no treatment. Jay had been having some pain, off and on, in his left thigh area, and I was concerned about disease progression. We already knew that he had disease in that area, but with this new pain, I was afraid that things may had gotten worse. So after consulting with doctors here and in NY, we scheduled a bone scan and a CT scan to be done in Baltimore on January 5.

While Jay was on the table for his bone scan, he was singing and being as goofy as ever. The scanner started at his feet and over the course of 30 minutes gradually moved towards his head. As it got closer to his head I tried to remind him to stop singing and stay still for the scan. Well, Jay continued to sing, and told me that he was only moving his lips at this point, not his whole jaw, and to stop worrying! What a character! But then again, this is the kid that LOVES 3F8 antibody treatments, and actually enjoyed being admitted to the hospital! After the scan was complete, they repositioned him for the second 30 minute scan, and this time he fell asleep and slept through the entire thing.

A couple of days later, Jay and I were off to Florida! One of Jay's good friends, a staff member at RMDH, has run in the Disney Marathon for the past 6 years. Each year, Richie arranges for families from RMDH to join him. He finds sponsers to basically pay for the entire trip. We had one group that paid for our airfare and hotel, another group arranged for our tickets to all of the theme parks that we went to, and yet another organization provided spending money. We were very fortunate to be able to go. We were joined by 4 other families we had gotten to know over the last year at RMDH (all of whom, like us, were no longer at RMDH). Also a few other staff and volunteers from RMDH made the trip. For the last couple of days, we were also joined by Jay's NY Giant buddy, Jason, and his wife, Brill. For one day, we hooked up with another family we had met in NY. The Robinson's from MN were at Disney on a family trip and were able to meet up with us the day we went to Universal. It was quite a group! We all pretty much stayed together while touring the parks, so at any given moment, there were usually a group of 20 or so! We would go from one ride or attraction to the next, and the ones that wanted to ride would go, but there would always be someone back to watch the little guys or watch our backpacks. We were also able to go right to the front of the line! That made things so much faster and easier! Jay rode every ride, and some of them twice! Fortunately his platelets had rebounded by this time, so he was able to enjoy the rides. During this trip, we went to Epcot, The Magic Kingdom, Animal Kingdom, MGM, Universal, and Universal's Island of Adventure. We had a great time, and for the most part, we had great weather (70's and no rain!). But one day, it was cool in the morning when we left, as usual, but we quickly realized that it wasn't going to warm up that day. By this time though, we were already at the park, and everyone had dressed for 70 degree weather! We made a beeline for the gift shops where sweatshirts, gloves, hats, and some blankets were purchased by all! The temperature never got above 40 that day, and there was a wicked wind.

On the day of the Marathon, we all went to meet Richie at the finish line. We kind of figured when he would be done, and we actually got there shortly before he crossed the finish line. We were able to see him cross, and yell and cheer for him. One family had made a huge sign for him, which we had all signed. The highlight of the whole trip for Jay, was when Richie left the finish area and got to our group, he gave his Marathon medal to Jay! Each year, he gives his medal to one of the kids, and Jay received it this year.

A few days after returning from Florida, we were back on the train to New York for scans. Jay was so happy to be going back, and everyone there was so happy to see him! A few funny stories while we were there: One evening I thought that Jay had been in the teen room watching movies with friends. It was getting pretty late and he still wasn't back to the room, so I went looking for him. I checked everywhere that I thought he could be, but couldn't find him. The living room was closed off to families for the night because of a private party for one organization. But, as a last resort, I poked my head in there. There was Jay, working the coat check and socializing! He told me that the RMDH manager had hired him to work that night for salary plus tips. He was having a great time! When I asked what else he had done all night besides the coat check, he replied "talking and dancing with hot women". That's Jay for you.

The week went by uneventfully with Jay getting his bone marrows, CT scan (head & neck), MIBG scan and VMA/HMA collection. I was able to speak to Dr.. Kushner late in the week. At that point, no "official" results were back, but he said that from what he could tell, things appeared to be the same as before. I talked to him about what treatment to do next. He said that we should do 2 more rounds of the irinotecan/temozolomide, then come back for more scans. Then, he said that perhaps Jay could start MSK's arsenic trioxide protocol. We discussed MIBG therapy (which would be done in Philadelphia), and Dr. K was a little hesitant about that for 2 reasons: 1) Stem cell backup is needed for that, and Jay's stem cells were harvested while he was not NED, so it's possible that we don't have "clean" stem cells. 2) He wasn't sure that this treatment would actually help, when it would definitely set Jay back to being transfusion dependent for a long time.

I asked about fenretinide or accutane, but Dr.. K didn't seem to think that they would do much for Jay. I am considering the arsenic trial, but am not too keen about it. If any of you NB parents/experts out there have any suggestions, I would be happy to hear them!

Also, after talking about Jay's leg pain, Dr.. Kushner said that we could go ahead and radiate that area. So, after getting back to Maryland, I set up a consultation with Radiation Oncology in Baltimore. When the radiologist informed me about some of the very likely side effects - stunted growth in the leg, and, more horrifying, almost certain development of a secondary cancer, I had to rethink things. Although it is a possibility that Jay would not survive NB long enough to develop a secondary cancer, I didn't think that it was a chance that I wanted to take. Especially, since, as I discovered while talking to the radiologist, this radiation would be done for pain management only. Although Jay has been experiencing leg pain, it hasn't prevented him from any activity, nor does he even mention it unless asked. In fact, he always declines any pain medication, even Tylenol, and Jay would definitely take a pain pill if he needed it. So, that was my justification for not pursuing the radiation. But, I will definitely discuss it further with Dr. Kushner when we return to New York later this month.

Since returning from New York in January, Jay has completed 2 more rounds of chemo, most recently last week. Jay's counts rebounded nicely after the first round and he didn't need any blood transfusions, but that could be because there had been a 6 week break since chemo and his counts started out higher than usual. During that break, Jay's hair had started to grow in again, and he couldn't have been more thrilled! I would catch him admiring his hair in the mirror, and looking forward to when it would grow enough to go without a bandana. But, unfortunately, a couple of weeks ago, it fell out again. This is the fourth time that Jay has had to go through losing his hair. I really feel bad for him. Hopefully over the next few weeks, Jay's counts will not drop too much and he will make it through without needing any transfusions. Currently, Jay is feeling OK, with just the usual side effects from the irinotecan, a little nausea and about a week long bout with diarrhea. He is very much looking forward to his 16th birthday on March 13.

We will be heading back to New York in a few weeks. Hopefully by then, I will have more of an idea of what the next treatment regimen will be. Again, if any of you NB experts have any ideas or suggestions, I am all ears!

Thanks for checking in!

Virginia

Wednesday, December 31, 2003 0:26 AM CST

Hi Everyone!

Leaving New York was very hard on many levels. After being there almost 2 years, it became "home" almost. I used to joke and say that we were afflicted with the "Stockholm Syndrome" - where, as an unconscience coping method, hostages learn to identify with their captors, in this case, NYC & MSKCC. We had made friends, and had become comfortable with the routine of everything. Not to mention all of the special things we were able to do while in NY. Maybe you all were tired of hearing about all of the glamorous things we got to do, but that was just part of our "unreal reality". Everything there was cancer, cancer, cancer. And in between, we had some amazing times. But, truthfully, I am glad to get home to a more normal lifestyle. Jay, on the other hand, misses it terribly. He made some great friends, and was so used to being able to just go downstairs and find someone to hang out with. So, he's a little bored with not having friends around all of the time. I think he's getting used to being back home though.

It's been awhile since I've updated, so to get to the point, things are OK with Jay, so far. He has continued the chemo combo of irinotecan and temozolomide that he started in NY. He is being treated at The University of Maryland Medical System in Baltimore, which is where he was diagnosed and treated for 3 weeks before we went to MSKCC in NY. So far things are going pretty well with the transition to a new team. The original oncologists that we had in January 2002 are no longer with UMMS, so we are working with a new doctor, Dr. Grossman. He is very nice, as are the nurses, Chrissy, Mari, and NP Diane. They are more than willing to do things the way Jay is used to, and are very cooperative with our NY doctors. No egos here! Compared to MSKCC, it is very quiet in the clinic; sometimes Jay is the only patient there!

So far, Jay has completed two 5-day cycles of the chemo. We are able to do it outpatient, which is great. UMMS typically gives chemo inpatient , but once again, they were more than happy to accomodate us and give it as outpatient. After the first cycle in early November, we decided to wait 3 weeks until the next cycle instead of two weeks. This was because Jay's ANC and platelets were not rebounding as quickly as we would have liked. The next cycle was done the first week of December, and by the following week, his platelets really took a dive. On December 12, Jay received a platelet transfusion, the first in over 2 months, and only the second since March! However, that night, Jay had a nosebleed that wouldn't stop. Assuming that it was due to low platelets, I called the doctor, and we were instructed to go to the Emergency Room. So, at 11:30 pm we made our first trip to the ER at UMMS. To make a long story short, we were there until 2:00 the next afternoon. Jay's platelets were OK, but he was given 2 units of red blood. Along with the blood, he got the usual pre meds, which knocked him out. I was really wishing that they would give me some of those meds, since I was spending the night in a not so comfortable chair next to Jay's bed!

A few hours after we left the ER, Jay and I were on a train back to New York City. Jay's good buddy from RMDH was having a tree trimming party on Saturday and had invited us, so we spent the whole weekend back at RMDH. Jay was very excited and had a great time that weekend. We planned to return to MD on Monday, but as Jay needed a CBC done on Monday, we arranged with MSKCC clinic to have it done there rather than rush back to MD that morning. It all worked out fine, and then we took the train home (much to Jay's regret!).

After another CBC later that week, it was clear that Jay's counts just did not want to come back up. We started GCSF shots over the weekend, but he was still having problems with his platelets. In fact, he received another platelet transfusion 2 days before Christmas. At this point, we should have been doing another round of chemo, but his marrow has really taken a beating. We are going to hold off on the chemo until after his scans, which will be coming up soon.

On the non-medical side, things are kind of quiet. I have been trying to keep Jay somewhat isolated (as much as a teenager will let me, anyway!). With his ANC and WBC levels so low, not to mention the platelets, I prefer to keep him close to home. I guess I have become a little paranoid with all of the hype surrounding the flu season. But, better safe than sorry.

Jay has been very focused on his progress with Boy Scouts. When he first started Scouts in 2nd grade, he was determined to go all the way and get to Eagle. After missing almost 2 years, he was very anxious to make up for lost time. Jay has been diligently working on merit badges. Since we've been back in MD, Jay has earned 6 badges, and is hard at work on several others. Jay had completed most of the requirements for one badge before becoming sick, but needed just one more camping trip to finish. So, one cold weekend in November, he went camping with his troop, finished that badge, completed others, and had a great time. I did have some concerns, but he was so determined to go, we took precautions, and things worked out OK. He is now working on one badge that requires him to learn things such as foreign policy, international trade and commerce, and economics!

One thing that Jay has not rejoined yet, is his beloved Maryland State Boychoir. They have been a tremendous source of support in many ways for both me and Jay. But, Jay does not feel that he would be able to stand for long periods of time during rehearsals and concerts, and also does not want to call attention to himself by sitting down. He is also very self-concious still about his baldness, and does not want to look different from the others by wearing a hat or some other head covering. In addition, during cold and flu season at least, I am still somewhat wary of having Jay around large crowds. We miss everyone at MSB, and hope to be back soon!

There is more to tell, but this is so long, and sooooo overdue so I will save it for next time.
Thanks for checking in with us and please sign the guestbook.

Happy New Year!!

Virginia

Saturday, November 15, 2003 3:28 PM CST

ENTRY FROM OCTOBER 25

Hi Everyone!

Results of Jay's latest scans are in, and basically nothing has changed. Bone marrows are negative, but as Dr. Kushner explained, it could just be the sample. He expects that there are still neuroblastoma cells in the marrow, just not much. The MIBG was still positive in all of the same places - skull, spine, pelvis, hips, knee, etc.

For now, Jay will continue to get the low-dose chemo combination of irinotecan and temozolomide. This is not a curative therapy, it is more for maintainence. In older kids such as Jay, the cancer is very slow growing, but is also extremely difficult to get rid of. Therefore, even though the cancer is fairly widespread, it's possible for him to remain "stable" like this for a while. Jay feels pretty good, and except for the lack of hair and the mediport in his chest, you would probably not know that he is sick.

So...... the rumors are true. Jay and I will be coming home! Since the irinotecan/temozolomide therapy is not unique to MSKCC, and Jay is not as frail as he has been in the past, I felt that it was time to come home and try to resume a normal life. Our doctors in New York will continue to be Jay's primary medical team, and we will continue to scan and test in NY. Also, at some point in the future, Jay may get the 3F8 antibodies again, and, if his doctors decide that he will benefit from a stem cell transplant, it will be done in NY as well. So, we will definitely be back in NY periodically. The plan now is to get his chemo in Maryland, with the MD doctors working cooperatively with the NY doctors. The MIBG treatment in Philadelphia is also a possibility for down the road.


NOVEMBER 15

This was the update that I wrote before leaving New York. Upon our return to Maryland, I was without Internet access until just now, and was unable to post an update. I apologize for being out of touch with so many people, but I will bring you up to date with what is happening here at home soon!

Virginia

Friday, October 17, 2003 11:15 AM CDT

Hi Everyone!

I would like to thank those that have contributed to the Lunch For Life campaign. I understand that it has been extended, and as of October 15, a little over $80,000 has been raised! Thank you so much!

Jay's second round of irinotecan/temozolomide went much better than the first. The first night was spent just like the other times, sick most of the night, but the rest of the week went much smoother. For the second night, I tried a different combination of nausea meds for Jay. I actually didn't sleep well that night, and I would check the clock each time I woke up, counting the hours that Jay was sleeping without waking up sick. That morning, after sleeping the whole night through, I asked Jay what he thought, upon waking and realizing that he had not been sick. "Hey, I didn't get sick! Cool!", was his answer. Yes, very cool!! And the next 2 nights were just as cool! He wasn't so lucky the last night, but as it was Friday night/Saturday morning, we just slept in, and Jay was feeling fine that day.

Jay was scheduled for a CT scan on October 3rd, to make up for the one that was postponed by the Blackout (yes, I know, that was 6 weeks earlier!). Since they were doing the one test, they decided to go ahead and schedule the others at the same time, even though originally scans weren't going to be done until after 4 rounds of this chemo. So, on October 3rd, Jay had an MIBG scan, CT scan, and bone marrows done. It was kind of a pain doing everything in one day. For the bone marrows in the afternoon, Jay had to be NPO (no food or drink) since midnight the previous night. BUT, he had to drink 20 ounces of contrast/clear fluids for the CT scan that morning. AND the contrast needed to be taken 2 hours before the scan, but 2 hours before the scan, Jay was on the MIBG machine where he had to have an empty bladder, and needed to be still for 2 hours! Needless to say, it was a challenge trying to get everything done in a timely manner! THEN, it turned out that Jay needed a platelet transfusion, so they transfused before doing the bone marrow aspirations. This was the first time since March that Jay needed a transfusion. In fact, just before starting this new chemo protocol, Jay's blood counts were back up to normal! They were definitely on the low side, but technically they were normal. I don't remember the last time his counts had been that good. Probably before he ever got sick. But after 2 rounds of chemo, we're back to seeing those little asterisks (indicating below normal) next to each blood component on the CBC printout.

On the fun side, we have had some nice excursions with RMDH. Each year, the NY Giants hold a benefit for the Ronald McDonald House - Dinner With the Giants. It's an opportunity to meet the Giants players, get autographs, take pictures, eat dinner, and bid on auctioned memorabilia and other items. RMDH takes a couple of families to the dinner, and just like last year, Jay and I got to go. In fact, Jay was specifically requested to attend by some people in the Giants front office!

One Friday night we went with RMDH on a Circle Line cruise around Manhattan. We enjoyed the views and lights of the city from the water. The next Sunday, we attended a NY Jets game with the House. We were in a skybox for the whole game. We were provided with food, the seats were comfortable, it was a lot of fun. Later that week, we were given a tour of a news studio by Janice Huff, the weatherlady from the local NBC news station iin Rockefeller Center. She also took us to the Dateline studios, and a few others. The news studio was directly across the hall from The Conan O'Brien Show, and when we left the news, Conan was just coming out of his studio. So we got to meet him. I don't think he was expecting a group of people to be standing in the hall. Shortly after he came out, a woman with a really cute chimpanzee dressed in a suit came down the hall. Well, most people's attention (especially Jay's) was quickly diverted from Conan to the monkey! Conan left pretty soon after that, I guess he didn't like being upstaged by a chimp!

Last weekend Jeff came up. We went to Ellis Island, and had a fun time. Well, that's all for now. Please sign the guestbook. We love to hear from you!


Virginia

Monday, October 6, 2003 7:49 PM CDT

***** SECOND ENTRY THIS WEEK! *****

Hi Everyone!

I know that I promised another, more current update soon, and I will get to that. But first, there is something that is happening all across the country that I would like to share with you. It is called "Lunch For Life", and it is a campaign that was started by Mark Dungan, of Ft. Worth, TX, father to 2 year old Sydney, who is battling neuroblastoma, just like Jay. Mark's goal was to raise $10 million in 10 days (October 1 -10) for neuroblastoma research, and hopefully to find a cure. The premise is pretty simple: donate $5, about the cost of an average lunch, to the Children's Neuroblastoma Cancer Foundation, tell 5 friends to do the same, and hopefully they will tell 5 friends, and so on. Please check out Mark's site www.sydneydungan.com for more details.

I really, really, really do not like to ask for money. Especially considering how wonderfully generous so many of you have already been to me and Jay. But, in this case, I feel an obligation, as a parent of a child with neuroblastoma, to help fund a cure and raise awareness. Neuroblastoma accounts for 7 percent of all pediatric cancers, yet is the cause of 15 percent of all pediatric cancer deaths! There is NO known cure for neuroblastoma diagnosed in a child after the age of one (Jay was 13 years old at diagnosis).

Unfortunately, pediatric cancer research gets very little funding. And of what they do get, neuroblastoma gets a very small percentage.

CHILDRENS NEUROBLASTOMA CANCER FOUNDATION is a 501 (c)(3) non profit organization, based in Bloomingdale, Illinois, dedicated to education about, support for, advocacy of, and research into cures for Neuroblastoma. The organization was formed by Milton and Pat Tallungan who lost their son Nicholas to Neuroblastoma in 1999. The foundation is governed by a board of parents, researchers, and physicians.

You can designate your donation to CNCF, in honor of Jay Barnett, in the following ways:

Online:

https://www.cncf-childcancer.org/donation.asp

(it is a secure site accepting Visa, MasterCard, Discover, and American Express)

Or:

http://www.sydneydungan.com/Pledge_Page.asp

After providing your information, you will be contacted by a volunteer or sent a pledge card to make your donation by mail.

Phone:

1-866-671-2623 CNCF direct line

1-877-795-7948 Mark's office, volunteers will be standing by

Fax pledge/donation card to:

1-630-351-2462

Mail:

Children's Neuroblastoma Cancer Foundation
P.O. Box 6635
Bloomingdale, IL 60108

Your donation is TAX DEDUCTIBLE to the full extent of the law.

You can learn more about CNCF online at www.cncf-childhoodcancer.org

To read Mark and Sydney's story, go to www.sydneydungan.com

Thanks for checking in with us. Check back soon for our latest news.

Virginia

Wednesday, October 1, 2003 10:11 PM CDT

Hi Everyone!

I know that I promised an update sooner, so I am sorry that it took so long. As time goes by, it seems to be harder and harder for me to muster any motivation or energy to do anything but the absolutely necessary things. I think now I know why some people feel the need to turn to things like alcohol and drugs. Anyway......

Once again, there's been a lot happening since the last update. Jay's scans were done after completion of the Phase I beta-glucan/3F8 study in mid-August. To quote Dr. Kushner, " Things are pretty much unchanged - MIBG & BM still positive." Since we are still on the make-it-up-as-we-go-along protocol, the decision was made to start a 4 cycle regimen of irinotecan/temozolomide. This would be done 5 days of the low-dose chemo followed by 2 weeks off, for 4 rounds. Jay has had irinotecan before, last winter, but never temozolomide. Since temozolomide is generally used to fight brain tumors, I was concerned about why they were using it for Jay. Apparently, studies have shown, that the two drugs used together have produced some pretty good results, so that's why they wanted to try it. The irinotecan alone didn't do much for Jay before, so I was willing to give this new combo a try.

The first week of this chemo was a little rougher than we expected. The irinotecan was given each day in clinic with no problems. The temozolomide was a little different. This medicine was in pill form, and was to be given on an empty stomach, so Jay took it each night before he went to bed. Each of the 5 nights went exactly the same. About 3 hours after taking the pills and anti-nausea medicine, Jay would wake up sick. For the next 3 or 4 hours, he would be up vomiting pretty much every 45 minutes. He would wake up, get sick, go back to sleep (maybe) and then start all over less than an hour later. During the day, Jay was feeling perfectly fine. It was just during the night that he would be sick. Needless to say, we got very little sleep that week.

The following week, the side effects of the irinotecan kicked in worse than ever before. The usual side effect is diarrhea, which lasts for a few days. This time, since we were dealing with another drug on top of the irinotecan, we weren't sure what to expect. Friday of the week after chemo, we went to Central Park with RMDH. As soon as we got there, Jay wanted to lay on the blanket and rest, while everyone played baseball. This was not typical for Jay. After resting for a little, he did get up to play, and he seemed OK. The next day, we were supposed to go to Six Flags with RMDH. Jay was looking forward to it, and we got up early to go. It was a 2 hour bus ride, and once we got there, Jay decided that he wanted to stay in the bus and sleep. I thought that he was just tired from getting up so early, but I let him sleep for a couple of hours. Then I encouraged him to get up and go into the park for some lunch. I rented a wheelchair so that he did not have to walk all over the park. We ate, and then met up with some friends. Jay went on a roller coaster, and seemed fine, but then became very lethargic again. We went back to the bus and Jay slept the rest of the day, while I read a book. Once we got back to Ronald, we pretty much stayed in the room, and then we both were in bed by 9:00 pm (very early for us!).

The next day, we were supposed to go to the NY Giants football game, the season opener. Jay was invited as a guest of Jason Garrett, one of the Giant's quarterbacks. Jason comes to RMDH periodically to spend time with the kids, and over the last year, he and Jay have become special friends. Jay still was not feeling great, but really, really wanted to go to the game. More to see Jason than anything else. We went to the VIP tent for breakfast, and got to go onto the field during the players practice. Marc Anthony, a Grammy winner, was there to sing the National Anthem. He was nice enough to come over and speak to Jay for a minute. All during this, Jay was feeling pretty good and was having a good time. But, when we went to our seats, it turned out that we were sitting right in the sun, and the sun was bearing directly down on us. We weren't really prepared for the heat, as we thought that our seats would be in the shade. We had been special guests for a game last year, as well, and we were in a shady area then. But this year, we were sitting in a different section of the stadium. The sun was very unbearable, so, at halftime, we went home.

Over the next couple of days, Jay started to feel better. But, by the weekend, the worst side effect of chemo, came about. Jay started to lose his hair. What made it so bad, was that it was completely unexpected to him. With irinotecan, typically, if anything, there is just a little thinning of the hair. Last winter when Jay was getting irinotecan, he was already bald, so that was not an issue. The loss this time was a real blow to him. I think he still looks great, though!

Anyway, there's more, but I am so overdue for this update, that I'll just post this now, and TRY to continue this later. Please keep Jay and all of these other kids in your prayers. Just today we heard that one girl that we had gotten to know here at RMDH over the last 20 months passed away. She had gone home a few weeks ago with nothing left that could be done. Unfortunately, this has become all too familiar to us. It seems that each week we hear of another child who has relapsed, or passed away. Last July when we went to Arkansas for vacation, we came back to the news that THREE kids we knew had died. And that was just in the 2 weeks that we were gone. There have been others since then, too.

Saturday, August 30, 2003 0:25 AM CDT

Hi Everyone!

We survived the Blackout of 2003! Jay and I were in the
Ronald McDonald House living room when the lights went out. We had spent the day with Karen and Michelle, Jay's 3rd grade teacher and a classroom aide who had been with his class all through elementary school. We walked through Central Park for a few hours, and were back at RMDH resting and chatting for a little while before they had to catch their bus back to Maryland. It was a little while before we realized how widespread the power outage was. Luckily, RMDH had a backup generator that powered the elevators and provided a few lights in the living room, dining room and in the hallways. For some reason, though, the RMDH phone system was out, but the payphones worked. Still not knowing what the cause of the blackout was, I spent nearly an hour trying to get ahold of friends and family who were far enough away to possibly not be affected. Finally I was able to get through to my parents in MD, who were watching the news and told me what was going on. Jay was busy hanging out with his friends, so while there was still some sunlight coming through the windows, I decided to pack for our weekend away from the city. It was pretty hot in the room, but since we are one of the few rooms at RMDH without air conditioning, I was used to it.

Later I went outside to see what was happening. It was much different than usual. There were so many people walking around, much more crowded than usual, a lot of vehicle traffic, people were using nearly every payphone on the streets, and most of the stores were closed. A few of the little markets were open, but they were either letting people in one at a time, or they were making you wait outside while someone inside got what you needed. The pizza places that stayed open (with their gas pizza ovens) were doing great business, as were the bars (lots of partying going on). Lines of people stretched down the block waiting to buy pizza, and they were only selling whole pies, no slices! A friend (Daniel's dad, Vic) waited in line for a pizza and was kind enough to share his family's dinner with me and Jay. RMDH decided to lock the front doors at 9:00 pm, we could leave, but wouldn't be able to get back in. They wanted to prevent people from coming in off the streets because the house did have some lights. By propping our door open to get some hallway light, I was able to do a little bit in the room. I spent the rest of the night chatting with my friend and doing some reading by flashlight. Jay and I finally went to bed very, very late, and we were very surprised to wake up the next morning and see that the power was still not on. It did finally return at 9:30 am.

Friday morning, hoping to get out of town as planned, Jay and I went down to Penn Station, only to find chaos. Apparently, that part of town still did not have power, and Amtrak was running VERY few trains. There were policemen blocking all but one entrance to Penn station. Once we got down there, there were no stores open, and no windows open for ticket sales, and it was extremely hot and crowded. I had made our reservations on-line, and just needed to use the machines to retrieve the tickets. But, out of 25 machines there, only ONE was in service, and there was a LONG line of people waiting to use it. Then, to top it all off, nearly every Amtrak train was either cancelled or delayed (probably just to be cancelled later). We decided to go back to Ronald, and try again on Saturday. But that was still easier said than done. We got back out to the street only to find that it was next to impossible finding an empty cab. It was so miserable out there, the Red Cross had set up a table giving out free fruit and bottled water. We eventually made it back and Saturday, rather than messing with the trains again, we took Greyhound for our few days out of the city.

As for the medical stuff since the last update: Jay finished the 4th and final cycle of beta-glucan/3F8 pretty much the same as the prior week. Each day after he was done, he would WALK from the hospital back to RMDH. Once back, he would right away go find his friends to hang out with. This was a big change from what used to be the norm - unable to walk, needing to sleep for a few hours, and having a lot of residual pain. One thing that didn't change, however, was the crabby, grumpy, nasty, and horribly emotional disposition that came from all of the drugs in his system. Fortunately, after several hours, Jay was back to his normal mood. Any parent of a kid getting antibodies knows exactly what I am talking about!!

So now Jay is finished with this Phase I study that he was taking part in. As far as I know, he is only the 2nd child to complete this study (although there are others still going through it). This is a dose escalation study, and Jay was one of six patients, in the second of four groups. The others that all started before or with him, were taken off for different reasons - either having adverse reactions, disease progression, or HAMA development. We are lucky and glad that he was able to complete all four cycles. Since we are not sure when, or if, Jay will get antibody treatment again, Jay was very disappointed. He actually enjoys them! Again, any parent of an antibody kid knows just how strange that is!

Jay has also finished most of his scans (still waiting to reschedule the CT scan which was postponed due to the blackout).

The week after Jay finished antibodies, he went to a camp for kids with cancer which was affiliated with MSKCC. The camp was in New Jersey and it was free of charge. They even provided bus transportation from the camp office in the Bronx, to the camp and back. I dropped Jay off Monday morning and picked him up on Friday morning. This was the longest length of time we had been apart and out of contact since Jay was diagnosed in January 2002. Jay had a great time; among other things, he swam, did the climbing tower, zip line, and rocketry. But the highlight was the last night when he and his cabin mates stayed up until the wee hours of the morning bombing the girl's cabin with water balloons, and then were retaliated upon with a food fight!

A few weeks ago we went to a Brooklyn Cyclones (Class A) baseball game with RMDH. While there, we ran into Dr. Pozzo, one of Jay's favorite clowns (the other being Dr. Bovine) from the hospital. Several days a week, clowns from The Big Apple Circus Clown Care Unit make the rounds of the pediatric areas of the hospital. Dr. Pozzo was doing a "gig" at the stadium that night and Jay invited him to join us when he was finished. Several innings later, Dr. Pozzo arrived in "civilian" clothes and spent the rest of the game with Jay. Jay was telling Jon (Dr. Pozzo's real name), that he had a bone marrow biopsy coming up the next week. He was telling him all about the propofol (anesthesia) and how goofy it makes him feel when he wakes up. Jay asked Jon to come see him that day as he recovered. Four days later, while Jay was in the recovery room following the bone marrow biopsy, Dr. Pozzo and Dr. Daisy stopped by. Jay was just starting to stir, so I asked him to try to open his eyes. When he saw the clowns he immediately tried to wake up. The clowns stayed in the recovery room entertaining Jay for almost an hour! At that point, Jay was fully awake, had been clowning around with them, and was ready to leave the hospital.

Please check back soon, as I will try to post another update in the next few days.

Thanks for checking in!

Virginia

Saturday, July 26, 2003 10:23 PM CDT

Hi Everyone!

Since our last update, we've been busy! The day that we moved back to RMDH from the Helmsley, we had a nice visit with Jay's Godmother, Sharon, and her mother, Carolyn. We met them at The Plaza, which is one of the finest hotels in the city. We enjoyed High Tea at the Plaza with them, and then had a nice horse drawn carriage ride through Central Park. We then spent a few more hours with them, before Jay and I went back to Ronald.

The following day, Jay started his last week of the 3rd cycle of the beta-glucan study. Things went OK, with just the usual side effects. Jay and I were fortunate enough to receive complimentary tickets from the hospital's Child Life staff to a performance of The Lion King on Broadway. So, Wednesday night of that week we saw an absolutely spectacular performance! We were so lucky, because as I understand, tickets are very hard to get (as well as expensive), and we had excellent seats - on the aisle only eight rows from the stage!

On the 4th of July, the 19th precinct of the NYPD took everyone from the Ronald McDonald House to see the fireworks on the East River. We were above an old police heliport , with a perfect view of the nationally televised Macy's fireworks. The NYPD also provided a really good barbecue dinner beforehand. This was the 2nd year in a row that we spent the 4th of July with RMDH and NYPD.


At the conclusion of this 3rd cycle, we anxiously prepared for our much-awaited family vacation. Last year, Jay and I were not able to go on a planned vacation due to his treatment schedule. So, last summer, Jeff and I planned a vacation for this year, not realizing that Jay would still be in New York, still undergoing intense treatment. Luckily, the vacation fell during our 2 week break between antibody rounds. Since Jay's counts were good and he was feeling very well, we got clearance from the doctors to go! Jay still needed to have his blood drawn and tested for HAMA. Normally that would have to be done during the time that we should have been driving to the resort, but the clinic accommodated us, and let us come in before we left, to get his blood drawn. So, on July 9th, after taking care of business at the hospital, we took the train back to Maryland. We picked our car up and drove to West Virginia to Jeff's house. We left from there Wednesday morning on our 3 day car trip to Arkansas. The usual response that we got when people found out that we were going to Arkansas on vacation was, "ARKANSAS!?!?" But, really, it was very nice. We were staying at a resort on a lake (Crown Lake). The resort also had indoor AND outdoor pools, canoes, paddleboats, and places to fish. We broke the 1000 mile trip up into 3 days; we drove to Knoxville the first night, stayed in Memphis the second, and arrived in Horseshoe Bend, Arkansas on Friday. Our accommodations were extremely comfortable. We had a log cabin, which from the outside, looked like one big cabin. It had a huge porch filled with rockers, that ran the width of the cabin. It actually turned out to be 2 units, sort of like a duplex, with a separate entrance for each side. Each unit had 1 bedroom, one bathroom, a fully stocked kitchen and living room. There was also a doorway with a short connecting hallway between the units. We had both units all for ourselves, and Jay and Neil immediately picked out "their" cabin. We left the connecting door open all of the time, though, and we were always back and forth, but the boys still thought it was pretty cool that they had their own TV, bathroom and kitchen! We spent the week sitting (and reading!) at the lake, and since everything was so close together, Jay and Neil were back and forth between swimming in the lake, swimming in the pool, canoeing, paddle boating, and fishing. We also enjoyed the shuffleboard, miniature golf, and gameroom in the evenings. Fortunately, Jay now has a mediport, so he can swim. Until a line infection last October that necessitated the removal of his broviac (and the replacement with the mediport), Jay was not allowed to go swimming. So, maybe it was just as well that we could not go last year. He would have been miserable not being able to get in the water!

It was very beautiful there, and we were so secluded. The town was very small (only about 2400 year round residents). We really were in the middle of nowhere! We couldn't get a cell phone signal AT ALL, and there was no local Internet access, so we were very out of touch! We also quickly found out that restaurants close by 8:00 pm, so it was a challenge to get off the beach, showered, changed and at a restaurant for dinner before they closed! I don't think we saw any place that did NOT have catfish on the menu! It could not have been any more different from New York, and that was exactly what I wanted!

We checked out the following Friday, and started our 3 day trip back. We stayed in Nashville the first night, Roanoke, Va, the second night, and then drove to West Virginia on Sunday. From there, Jay and I took Neil back to his mother's in Silver Spring, then we dropped our car off at home, called a cab to take us to the train station, and then had a 3 hour ride back to New York! That was a long day, but we had to be at the hospital early the next morning to start the last cycle of this beta-glucan study.

When we got back to NY, everyone noticed how good Jay looked. In 2 weeks he had gained 5 pounds. That was thanks to megace (an appetite stimulant he started taking during vacation) and good ole Southern cooking! He has a little color to him now, his hair is growing back and looks great, and he has also grown almost 2 inches over the last couple of months!

So now, Jay is finished with this first week of the 4th cycle. Things seem to be a little different this week. Jay is having a little more pain than usual, and he is getting headaches some days after the infusion. Because he gets Tylenol as a premed, he can't get it to relieve the headache (not enough time in between doses). So, he's been having to use an ice pack on his forehead. After an hour or so the headache has been going away. We're a little concerned about why Jay is getting these headaches, as he has not gotten them before. It may just be dilaudid-induced. Every day this week, Jay has WALKED home from the hospital!! Most kids leave in either a stroller, or if older, a wheelchair, so this is a big accomplishment for him. He is still groggy and achy, but he wants to walk. By evening, he is pretty much back to normal. There are now a few new teenagers at RMDH, so Jay has begun hanging out with them at night sitting around watching movies and talking until it's time for bed. Typical teenage stuff, and he's glad to finally have some kids his own age to be with.

Last night (Friday) we went with RMDH to see a Mets game. Jay wore his Orioles shirt!

Today, RMDH took a busload of families to Six Flags Amusement Park in NJ. We had VIP passes to go straight to the head of the line for all of the rides. It was so hot there, and so crowded, that having the pass was so nice! I talked to one person (not from the House) who said they had to wait for 3 hours for one ride! Jay rode Nitro (a very high roller coaster) 5 times! He rode a bunch of other roller coasters and rides too. He had been looking forward to going for so long, and he had a blast!

Monday, Jay will start this last week of the beta-glucan/3F8 study. In a couple of weeks he will have scans to determine the next course of treatment

Thanks for checking in and please sign the guestbook!

Virginia

Sunday, June 29, 2003 0:00 AM CDT

Hi Everyone!

Greetings from the Helmsley Medical Tower! Due to another chicken pox exposure several weeks ago, Jay needed to get another VZIG shot, just like that time last March. We got a call from the hospital one Sunday to go immediately to Urgent Care so that Jay could get the shot. Actually, it was 2 big shots, one in each leg. Jay is once again in isolation, so here we are again at the Helmsley. Actually, it's quite comfortable. It is very convenient to have our own kitchen in our room (with a whole refrigerator, not just one small shelf) instead of having to go 5 floors down, like at RMDH, just to get a cup of ice. Also, our room at RMDH does not have A/C, so during this week of muggy, 90 degree weather, the Helmsley has been wonderful. Although we do love it at RMDH, and we miss the activities and the people, we are enjoying the positive things about being displaced!

Jay just completed his first week of his 3rd round of beta-glucan/antibodies. He continues to use the "hypnosis" skills that he has learned. He has become extremely good at helping himself. At this point, it is all him, he manages the pain all himself. Dr. Pat and I are very proud of him. That said, it is still awfully painful for him; some days worse than others. He still needs several doses of dilaudid, he still gets hives, and he still has some residual pain in the evenings, but he manages to deal with it. Even drinking the beta-glucan is becoming easier for him. It still tastes nasty, but he is getting used to it. I don't mean to trivialize this at all - it is still a horrible thing to go through, the pain and the icky medicine day after day - but Jay does it with hardly a complaint. He is amazing!

Our isolation period is for three weeks. For the first part of it, we didn't need to go to the hospital every day, so we came home for 10 days. That was the longest break we have had in the 17 months that we have been in New York. Even with 10 days, there were lots of people that Jay wanted to see, but didn't get a chance to see. Jay needed to get blood drawn to be sent to MSKCC for a HAMA test, so we went to University of Maryland Medical System for that. This is the hospital where Jay was diagnosed and treated for the first 3 weeks before going to NY. This was our first time back. He was hoping to see some familiar faces, but, both pediatric oncologists, his favorite nurse, and his favorite child life specialist had all left UMMS for one reason or another. This really made us realize how lucky we are being in NY, with the continuity of the staff that we have had over this last year and a half. While we were home, we were also able to visit with Jay's Uncle Steve & Aunt Nancy. They were in from South Dakota, and we were able to spend a couple of days with them before we came back to NY. One thing that Jay really wanted to do was to have a crab feast with all of the Macleays. So, the night before we left, we had a crab feast with Grandma & Grandpa Macleay, all of the aunts and uncles, and all of the Macleay cousins! It was a lot of fun, and the crabs were huge and good!!

This first week of antibodies coincided with Jay's last week of isolation. Originally, we were given the choice of pushing the week back or staying on schedule and going inpatient for the week. We really did not want to change the schedule because we had a family vacation, scheduled since last year, that luckily fell during our 2 weeks between antibody rounds. Since Jay and I missed our vacation last year, we didn't want to miss it again this year. So, with approval from the doctors, we opted to do the first week inpatient. Well, the night before we were due back to NY, we got a message from the hospital telling us that they rescheduled us to start a week later. This started a series of phone calls between me and the clinic; me reminding them of our earlier agreement regarding our vacation; them agreeing to put us back on the schedule for inpatient 3F8s; me asking why we couldn't go ahead as outpatient since back in March they didn't seem to regard isolation as an issue (remember, Jay was inpatient with neutropenia and we had roommates and no isolation precautions for most of that time); and finally, them agreeing to give antibodies to Jay as an outpatient in the clinic, but under certain isolation restrictions. This actually worked out pretty well.

In the meantime, Jay received his much awaited book, Harry Potter and the Order of the Phoenix. In fact, he has already finished it. He has spent most of his free time reading it. What a quiet change of pace, the TV has been on hardly at all!

Also, CONGRATULATIONS TO JAY - he has been promoted to the 9th grade! He was diagnosed midway through 8th grade, and has been receiving home instruction at RMDH since October, whenever his treatment schedule permitted. He was very concerned about being 2 grades behind, but now he will be just be one year behind. Jay doesn't mind that so much, because now he is in the same grade as his buddy, Tim!

Next week, Jay will be off isolation, we will be back at Ronald McDonald and he will finish this upcoming week of antibodies in the clinic under normal conditions.

Thanks for checking in, and please sign the guestbook!!

Virginia

Tuesday, June 3, 2003 3:17 PM CDT

Hi Everyone!

After Jay's first round of the beta-glucan with antibodies, he spent the week of May 19 doing scans again. Results from his MIBG and bone scan show that things are stable, nothing got better, but nothing got worse. Of course we would have liked for there to be improvement, but other than that, "stable" is pretty darn good! The bone marrow results show that the aspirates, and one biopsy are negative, while one biopsy shows just a few neuroblastoma cells. This is still pretty good - I knew that there was a good chance that the previous biopsy's complete negative results were due to the particular sample. Although NB cells are present in Jay's marrow, there was such a small amount, that it was possible to pull a sample free of the NB cells, and that's probably what happened last month. One little boy who was in clinic with us last time doing the same protocol as Jay, has had his cancer spread even further. His options are now limited. This is just another painful reminder of how agressive and unpredictable NB is.

Jay is now halfway through his second round of this Phase I trial. He continues to use the hypnotherapy, or guided imagery. However, this time around, although Dr. Pat checks in a few times a day, it's all me and Jay! I have been doing a pretty good job of "guiding" Jay through the pain (if I do say so myself , lol) and Jay does an excellent job of using his mind to control the pain!
(To all of Jay's former teachers: all those years of daydreaming in class have finally paid off!). He still experiences pain, and continues to require several doses of dilaudid, but overall, he says that it is MUCH better. From my point of view, I notice that his heart rate and blood pressure do not skyrocket like before, and he seems much more relaxed than before. It's definitely much easier to bear, as a parent watching your child endure such a painful procedure. It still is not easy though, to hear the screams and cries coming from the other kids. Hopefully one day, all of these kids can benefit from this hypnotherapy the way that Jay has.

During the week, the after-effects of antibodies haven't changed. He still spends much of the day and into the evening, sleeping, and in general, feeling pretty groggy and tired. Some days, he also has some residual pain hanging on, usually in his hands and feet. Then, around 11:00 or midnight, right when I'm ready to go to bed, he is all wide awake and back to his usual, funny, playful self!

Last Saturday, one of the volunteers here at RMDH organized a breakfast for the RMDH moms at the Central Park Boat House. It is a nice restaurant right next to the pond where you can rent rowboats. We were treated to a delicious breakfast early Saturday morning before they opened to the public. We were seated on a large porch area right by the water. It was so pretty. It was also kind of nice to get away for a couple of hours by ourselves. When I got back to the room, Jay was still asleep in bed!

Last night, Ronald McDonald House of NY was celebrating their 25th anniversary along with their annual $1000-a-plate dinner held at the Waldorf-Astoria. Jay and I were invited to go and were asked to speak a few words about the house. Unfortunately, we were not able to attend since Jay was not feeling well.

Jay would like to wish Richard and Michael O. good luck this weekend with the Relay for Life. They are friends of his from Lindale Middle School, and every year they, as well as their mom, Kim, each organize a team to walk and raise money for The American Cancer Society. This year they are walking in honor of Jay! Thanks guys, and good luck!

Please continue to keep Jay in your prayers, as well as his friends, Daniel, Christi, Carl, Scott, Michael R., Josh and especially right now, Becca, Henry, Hannah, Michael D., and John K. Thank you, and please sign the guestbook.

Virginia

Friday, May 9, 2003 2:08 PM CDT

Hi Everyone!

I held off updating because I wanted Jay to write about his trip. I thought that it would be a little nicer hearing about it from him. But, that was easier said than done. I want to catch everyone up on what's happening now, and later I will have an account (in Jay's words) of our trip, which was FANTASTIC!!!

The week of April 21-25 was spent testing and scanning. It had been a month since some of Jay's latest scans, and even though there had been no treatment in the interim, they wanted so have some up to date results before starting the new protocol. The CT, bone scan, and MIBG all showed no significant change since January. Since his March MIBG had already indicated no change this was actually good news. We already knew that he was chemo resistant, but this just showed that even after a month with NO treatment, his disease had not progressed. In the world of neuroblastoma, where even during treatment, things can drastically change for the worse literally overnight, this was great news (to me anyway!).

Yesterday, I got results from the latest bone marrow biopsy. This time both the aspirates AND the biopsy were negative! For the past bunch of tests, including the prior one from a month ago, the biopsies have continued to be positive while the aspirates were negative. It seems kind of weird that in the last month, with NO treatment, the biopsies would suddenly become negative. It's possible that it could just be that that particular sample was negative. I don't mean to be negative, just realistic. But, Dr. Kushner was pleased and asked just what exactly Jay did while in London!! We may have to go back to England if we keep getting these kind of results!

For the past two weeks, Jay has been doing the Phase I trial of beta glucan and antibodies. The antibody part of the treatment is the same as before, but prior to getting the infusion, he has to swallow 40 cc (about 8 tsps) of liquid beta glucan. It doesn't sound like a lot, but the beta glucan is EXTREMELY bitter with a bitter aftertaste, and he is not allowed to eat or drink anything with it to wash it down. He is allowed to suck on a lollipop in between sips, to take the taste away, though. Then, he has to wait an hour before the antibodies start. He cannot eat or drink anything during that hour either. I filled a little medicine cup with about 2 cc, and Jay would quickly throw it back as if it were from a shot glass. The first 2 days it took about 1 ½ hours to finish. On the third day, the doctor told him that he needed to finish it more all at once instead of so spread out. He proceeded to get it all down in 10 minutes (still little bits at a time). We were all so proud of him, and he has been getting it down like that ever since. Some kids bite the bullet and just chug it all at once, but Jay's method works for him.

For this round of antibodies, Jay has been working with a doctor from the Integrative Medicine Services. They are trying to help the kids with pain management using a kind of hypnotherapy. Jay is the first patient to try this. Dr. Vroom worked with Jay to try to use relaxation techniques and mind focusing to get through the pain. She has been in the room with us during the intense part of the treatment talking Jay through the pain. I have learned to do this for him too, but the goal is to get Jay to the point where he can be the "master".

Jay's first day with the antibodies was pretty bad. It has been about 7 months since he has done them, so that day was especially hard, even with the dilaudid that he is given. The pain was so bad for about 30 minutes, Jay was crying and he kept saying he wanted to go home. It was heart-wrenching. In addition, he was getting hives which is quite common, and his heart rate was up to around 150-160. That night, he continued to have pretty bad pain in his feet and his hands. Even by morning, they still hurt. In the past, he was usually feeling better by morning. The rest of the week was not as bad in clinic, but he continued to have a lot of foot pain. We would get back from the hospital and he would sleep off and on, rarely leaving the bed when awake.

This week has been much better. Jay would sleep all afternoon and into the evening, but each day he would be up and about earlier and earlier. Also, he did not have too much pain at home. In fact, today, he chose to walk back to RMDH from the hospital, instead of riding in the wheelchair. I'm not sure he has ever walked home from antibodies before! Several days this week during the infusion, Jay actually fell asleep during the pain. That has never happened before either. It is still a very painful procedure, but Jay is handling it very well. He still gets hives everyday, but I have noticed that his heart rate rarely gets above 140 now. I think a lot of it has to do with Dr. Vroom and the hypnotherapy. It also could be from the 30 minute infusion, as opposed to the 90 minute infusion they used to get, or a combination of the two. I'm just glad that Jay is doing OK. He never complains about going back everyday and enduring it all over again.

The week of May 19, Jay will get tests and scans to see if there has been any improvement If all goes well, he will do his next 2 week cycle starting May 27.

Thanks for checking in and please sign the guestbook. Please also, continue to pray for Jay, as well as for his friends, Daniel, Carl, Christi, Michael R., and Brian, who were all doing antibodies with us this week. Also, prayers are needed for Scott, Becca, John K., Willie, Sophia, Josh and all of the other kids who are battling this nasty disease.

Virginia

Wednesday, April 9, 2003 3:04 PM CDT

Hi Everyone!

Things have been pretty quiet and pretty busy at the same time lately! Right now we are getting ready to go on Jay's Make-A-Wish trip, so I will make this short. The first couple of wishes Jay wanted were not able to be granted, so now we (Jay, Jeff, Neil, and I) are going to London to visit the set of the 3rd Harry Potter movie that is currently in production! We found out about this oppurtunity just before Jay went inpatient last month, so we really didn't have too much time to prepare. We needed to apply for passports (mine had expired), but we had to wait until Jay was out of the hospital. Once he was out, we really had to scramble to get the proper documents, get an appointment at the passport office, etc. But, that is all done now, and we are leaving in a few hours!!

One of the other moms here at RMDH planned to make Jay a birthday dinner on March 29, after Jay was out of the hospital. She made Jay cream of crab soup, one of his favorites that we can't find up here! The small little birthday dinner turned into a big party and Jay had a wonderful time. A bunch of volunteers at RMDH came even though it wasn't their regular night to be here. It was nice! Special thanks to Maria for all of the delicious food, Donna and Kristina for the beautiful decorations, and Amanda and Richie for all of their help. Jay had a blast! An extra bonus was the visit that weekend from Grandma Macleay, Uncle Kenny and cousin Michael.

Now for the medical news: Jay's latest test results show no real change in the bone marrow; the aspirates continue to be negative, but the biopsy is still positive. The only other test he had was the MIBG scan. The other tests were not done yet because of scheduling conflict due to Jay being inpatient and getting harvested. The MIBG showed new disease, mainly in the ribcage area, and no improvement in the existing areas. He now has what they refer to as "refractory disease", which basically means he is unresponsive to the treatment (chemo). The plan now is to start a new Phase I trial that recently started here at Sloan. It is a combination of beta glucan and 3F8 antibodies. He will start that on April 28. It is a 2 week on, 2 week off treatment. The week of April 21, he will have more testing done. This wasn't the best news, but at least there still are options for us. We have seen too many other families be told to "go home and enjoy the time that is left". I was concerned about delaying the treatment because of the London trip, but the doctors insisted that he should go to London, that waiting a few weeks would be fine. So, that's what we are doing.

Well, I still have a few last minute things to do, so I better go. I just wanted to post something before we left, since we probably won't have internet access until we get back.

Please sign the guestbook!!

Virginia

Friday, March 28, 2003 9:43 PM CST

Hi Everyone!!

Jay was discharged from the hospital late Wednesday night! The reason he was in so long was because of the stem cell harvest. As long as the temporary catheter was in place, he had to stay in. After the first day of harvesting on Thursday, they got ZERO stem cells, but decided to try again on Friday. Friday's yield was 0.4 million. The doctors wanted to collect at least 5 million, and figured that it would take several days. Even though Friday's harvest wasn't much, it was still something, so they thought that maybe Monday would be a go too. Because of the chicken pox isolation from RMDH, they were considering keeping Jay in over the weekend anyway. We couldn't go back to RMDH, and Dr. Kushner wanted Jay to stay in NY for the weekend (he was concerned about how sick Jay had been the previous week, and wanted him close by in case he developed a fever again). So, we didn't really have anywhere else to go. When they got a little bit of yield on Friday, they decided to try Monday as well. The weekend went pretty well. The doctors decided to give Jay a day pass on Saturday, so I put Jay in a wheelchair, and out of the hospital we went!

Jay decided that he wanted to spend the day in Central Park. It was a beautiful day - sunny and warm with a nice cool breeze! So, on the way to the park, we stopped at a flea market that is held every Saturday in a school blacktop, across from the hospital. Of course, Jay found a couple of dogs there to play with! After the flea market, we ran into some friends from Ronald McDonald House. Jay hadn't been there in 3 weeks, and really missed everyone. Next, we stopped for a real cheeseburger in a real restaurant. Jay is not too crazy about the hospital food, so it was nice to see him enjoy the cheeseburger. Finally, we got to the park. It was so pretty. We went ALL over, stopped to look at some things, did a lot of people watching.......it was a great time!! At one point, we decided to go to the Swedish Cottage Marionette Theater, which I knew was just past the Belvedere Castle. We went up a very steep hill (especially steep when you're pushing a wheelchair!) to the Castle, only to find that the only way down on the other side towards the Marionette Theater was steps. So, we turned around and I had to push/pull the wheelchair DOWN the steep hill. Jay begged me to let go so that he could have a fast ride downhill!! (I didn't!) So, around Turtle Lake we went towards the Theater, but it was closed for the day. We continued to explore different areas of the park that we had not been to yet, before making our way back to the hospital. We got back at 8:00 pm, I was sore from pushing the wheelchair all day, and Jay was sore from sitting in it all day! But, it was a perfect day!!

Monday, we were back in the Donor Room for leukophoresis. This time they harvested 0.5 (million), a little better than Friday. So, they decided to keep him in and try Tuesday. Tuesday was a BUSY day. Up early for bone marrow biopsy, then straight to leukophoresis, then to Nuclear medicine for the injection for Wednesday's MIBG scan. We didn't get back to his room until around 4:00! He also received 2 units of blood and a platelet transfusion. This time they were able to get 1.1 million!! So, they decided to continue on Wednesday. Wednesday, while Jay was being harvested, I was across the room from him donating blood. I can't directly donate blood to Jay, since we have different blood types, but the Blood Bank can always use donations. For all the many transfusions that Jay has had (and will continue to have), this was my small way of helping someone else. Afterwards, we were off to Nuclear Medicine for the MIBG scan. Again, it was late ( around 4:30) before we were back to the room. Wednesday's yield was 1 - 2 million ( never did get an exact number), but they decided to stop there, figuring that this was the peak, and would not get much by continuing at this time. So, after waiting for the harvest results, getting the catheter removed, and all of the other stuff pertaining to discharge, we were finally back at RMDH at 11:30 PM!! Jay was very excited to finally be back to the Ronald McDonald House!!

Please sign the guestbook!!

Virginia

Wednesday, March 19, 2003 5:32 PM CST

Hi Everyone!

Well, Jay is feeling much better since my last update, but he is still in the hospital. His temperature started to return to normal by Friday night, and his counts started to increase. Yesterday his ANC and WBC were up to the point where he could have been discharged, but just like last month, they are going to attempt to harvest his stem cells this week. Today, Jay had a temporary leukaphoresis catheter placed in his femoral artery. This is the same thing that was done when he was in-patient in February. This procedure was done under anesthesia, just like his bone marrow biopsies. As long he has this femoral line, he needs to stay off of his feet, and stay in the hospital, since the line could be easily disturbed, and massive bleeding could occur. Tomorrow, if his WBC counts are high enough, his stem cells will be harvested. They will try Friday also, so Jay will not be discharged until some time Friday afternoon. Last Friday, Jay received transfusions of both red blood cells and platelets, and last night he got platelets again. He also continues to receive the daily triple dose GCSF shot in preparation for the harvest. Actually, for the last 9 days, the triple dose has been divided into 2 shots, one in the morning, one at night. One shot a day was bad enough, but now he has to endure two! Other than that, this past week has been a little less eventful than last week!

Monday, on St. Patrick's Day, a pipe band came through the hospital hallways, playing for the patients. It was pretty neat, drummers and bagpipers wearing kilts would stop at each room, and a piper would come into the room for half a minute or so, and then continue on without missing a note or a beat! Jay had been sleeping at the time, but woke up to listen. He seemed to really enjoy it, but then wanted to know why Scottish bagpipers were coming around on an Irish holiday!!

Although we weren't able to leave the hospital to see the big St. Patrick's Day parade, we reminisced about seeing it last year. Jay's Uncle Ken and cousin Michael came to visit for the weekend last year and we walked quite a long way down 5th Avenue watching the parade as we walked. It was a lot of fun.

The agenda for the next week will be stem cell harvesting tomorrow and Friday, and then Monday, Tuesday, and Wednesday will be all of the scans - bone scan, MIBG, CT scan, and bone marrow biopsy. So, please keep Jay in your prayers and hope that the results show improvement over last time!

Thanks for checking in, and please sign the guestbook!

Virginia

Thursday, March 13, 2003 0:12 AM CST

HAPPY 15th BIRTHDAY, JAY!!!!!!!!!

Hi Everybody,

Jay is spending his birthday in the hospital. As expected, he was admitted on Monday. We went to Urgent Care for bloodwork, and while there, he showed a slight fever. It was just slightly above what they consider the "magic number" (38.0 C) for admission. We stayed in urgent Care for almost 9 hours until his room was ready. While waiting, he received both a blood and platelet transfusion. Because of the chicken pox exposure, Jay was admitted to an adult floor in a private room. Very nice not to have to share a room for a change! There was some concern about the chicken pox, because Jay had a tiny pimple-like thing on his head. Ordinarily, this would not have raised any eyebrows, but because of the exposure, everyone wanted to be cautious. Dermatology came by a few times, and eventually they took a scraping of the site to get analyzed. Ultimately, they determined that it was nothing.

Tuesday, Jay spent most of the day sleeping. His fever got higher, and Jay started to chill late that afternoon. The pediatric doctors decided to move Jay down to the pediatric floor that night. Pediatric patients are treated differently (for the same symptoms) than adult patients, so the ped doctors wanted Jay closer to them. Apparently they decided that now, the isolation wasn't an issue anymore. I'm not sure why. Anyway, Tuesday night, Jay's temperature REALLY increased. It was up to 41.3 C, which was off their conversion charts for Fahrenheit. I think I remembered my conversion formula correctly (or close enough) and figured that his temp was roughly 106.3 F!! This was major cause for concern and, at one point, we had about 5 fellows in his room tending to him. I spent the next few hours rotating ice cold compresses on his head, neck, and armpit. At 3:00 am they brought in a cooling blanket to keep on him throughout the night. This was a machine that blew cool air through a hose connected to a flimsy, inflatable "blanket". This was kept on most of the day Wednesday too. It was mostly torture for Jay, because he was so cold. Even though his body temp was high, he felt very cold. All he wanted to do was bundle under the warm blankets, but he couldn't, because it would have made his temperature higher. Throughout the day, his temp would fluctuate between 38 - 41 C. And, at times Jay was feeling OK, though not great. Wednesday night it started to spike again, so again, he was being monitored very closely. He is also being given large amounts of antibiotics. At one point there was talk of maybe moving him to the Pediatric Observation Unit (sort of like ICU), but Jay started to get better. We finally got to sleep around 3:00 am again. Sometime during the night his fever came down to a more "normal" range 37 - 38 C. Today it is still a little high, but he looks much better!!

Some sort of infection in Jay's blood is the cause of these fevers. They are not yet sure what the source is. Two possibilities: one would be an infection in his Mediport, the other source would be intestinal. One side effect of the chemo and low WBC counts, is a breakdown in the mucous membranes lining the GI tract, starting with the mouth. This makes the patient very susceptible to intestinal infections. For awhile, the doctors thought that the likely source was the mediport, so it was possible that Jay was going to have to get it removed. A little while ago, the attending doctor came in and told me that now it is looking more likely to be an intestinal cause. They won't know for sure until tomorrow, though. So, for now, the mediport stays in.

I had started to post an update earlier this week, but there was so much confusion about everything (contagious, not contagious; temps up and down; mediport in, mediport out; etc.), and things were changing so rapidly that I knew if I posted something, I would have to reverse everything in the next post. So, I waited until things were a little less hectic. Sorry about how long this is turning out to be, again.

Jay is very excited about today (although as I write this, he is sleeping). Early this morning, every time a nurse or doctor would come in, Jay would very sweetly say, "Today is my birthday". It was pretty cute, because he was very tired, and still not feeling too good at the time.

THANK YOU to everyone who sent Jay a card or a present. Yesterday I went back to RMDH and brought back all of the cards and gifts that you all sent. I set them all out on the tray table here in the hospital room so that Jay could see them when he woke up. Once he got up, he was very excited to open everything. We put all of the cards up on the bulletin board in his room. Also, the wonderful Child Life staff here at the hospital, along with Diane, the social worker, brought in a cake and some presents and sang "Happy Birthday". He also is enjoying reading all of his birthday greetings on-line. So, thanks again to everyone who helped make Jay's birthday special!!

Well I guess I will post this before it gets any longer. Please keep Jay and all of his friends in your prayers, Daniel, Carl, Christi, Scott, Becca, Michael, Willie, Sophia, Anthony, Josh, and John.

Please sign the guestbook. I really enjoy reading your entries!

Virginia

Saturday, March 8, 2003 5:29 PM CST

Hi Everybody!

Jay is feeling pretty good these days, despite having had chemo all last week. Monday (Feb. 24) Jay started his 12th round of chemo, this time it was cytoxin/irinotecan. Monday was a long day in clinic - 11 hours! As usual during chemo, Jay was sent home with a continuous flow of fluids. He had to carry around a very heavy backpack full of hydrating fluids that flowed through lines to his mediport. Things were just fine until aound 3:00 am when Jay got sick. Usually, it takes a few days before the nausea sets in, so it really caught us off guard. At that point, Jay was getting sick pretty much every 30-45 minutes. When we went back to the clinic Tuesday, for chemo, Day 2, he was still sick, but by the end of another long day, he was feeling much better. In fact, from that point on, there was very little nausea, and Jay was feeling pretty good for the rest of the week!

One bit of unwanted excitement though....... When we returned to Ronald McDonald from the clinic on Tuesday (2/25), there were signs with "QUARANTINE" all over the place. There had been a child with chicken pox at the house, so the house was under quarantine until March 10. That meant that the playroom, computer room and living room were all closed; patients were to stay in their rooms; no mingling between families; all activities cancelled; and no visitors allowed. At the hospital the next day, the staff was busy dealing with the chicken pox exposure ( the kid had been in the hospital playroom that week also). The exposed children (Jay included) had to receive a shot of VZIG (varicella-zoster immunoglobin). This was to minimize the chances of contracting the chicken pox. Jay had already had chicken pox when he was 4, but because of all of the chemotherapy he has received, his immune system was very suppressed, and he was still susceptable to contracting the virus. Chicken pox in a person with a weakened immune system can be fatal, so this was really nothing to fool around with. So, on Wednesday, he had to receive a shot of VZIG - in fact, 2 shots, one in each leg. NOT FUN! That's not all........ Because he was exposed, and could still come down with chicken pox, he has to be in isolation (from non-exposed patients), from March 4 - 24 (there was some sort of non-contagious window, which is why the isolation period did not start right away). This means that, for this period, Jay needs to receive his out-patient care in Urgent Care, not the PDH, and when he is hospitalized, he will be on an adult floor (hopefully in a single room!). Also, he cannot stay at Ronald McDonald, so temporarily, we are now at a hotel. There were many families at MSK and RMDH that were affected by this chicken pox exposure, not just us.

Jeff came to visit for the weekend (2/28 - 3/2). Then Monday, March 3, we checked into the hotel. Actually, I kind of like the hotel. We have a kitchenette, so it is much easier to cook and have access to our own refrigerator in our room.

This week has been pretty quiet. Since Tuesday, we have been to Urgent Care for bloodwork several times. Thursday we were there all day, as Jay needed transfusions of both red blood and platelets. Today we were there for a few hours for another transfusion of platelets. Since Tuesday, Jay has also had to endure the daily injections of GCSF, to boost his white blood cell production. His WBC and ANC counts are zero, and have been for a few days. I expect that tomorrow or Monday he will become febrile and have to be admitted. But, so far, so good!

Please continue to keep Jay and all of his friends, Daniel, Christi, Carl, Scott, Anthony, Willie, Sophia, Becca, Michael, John, and Josh in your prayers.

Thanks for visiting our website and don't forget to sign the guestbook.

Virginia

Thursday, February 27, 2003 10:42 PM CST

Hi Everybody!

Jay was released from the hospital on Thursday, Feb. 13, but not before getting a furlough for Saturday, Feb. 8. Several weeks earlier, Jay received tickets to go see Saturday Night Live on the 8th. He found someone with a contact to Tina Fey (she is headwriter and a cast member of SNL) and somehow, with a lot of help from several people from Ronald McDonald House, we received 2 tickets from Tina Fey. SNL tickets are EXTREMELY hard to come by. Last summer, we took a tour of NBC Studios, and the SNL studio was included. The tour guide said that you had a better chance of being ON SNL than being in the audience! Because Jay's counts were starting to come up, his doctors, not wanting him to miss this unique opportunity, allowed him to leave the hospital for a few hours. We took a taxi to Rockefeller Center where we watched the 2 ½ hour dress rehearsal. It was so cool - I found myself watching more of what went on behind the scenes, rather than the show. It was very fascinating. We had a good show too - the guest host was Matthew McConaughay, and the musical guest was The Dixie Chicks. When it was over, we took a taxi back to the hospital, just in time to watch the live show on TV. That was very interesting also. They must have done some tweaking of the scripts, because some of the skits had a few differences on TV than what we saw in rehearsal. Also, we saw many more skits in rehearsal than what made it to the live show. It was a great time, and Jay was thrilled to be there.

By Sunday the 9th, his counts had come up high enough that he probably could have been discharged by Monday. But, his doctor wanted to try to harvest his stem cells that week (the reason for the triple doses of GCSF that he had been given). In order to harvest, he needed a bigger line put in than what his mediport provided. So, on Monday, while he was already under anesthesia for a bone marrow biopsy, they put a femoral line in his upper thigh. Jay's platelet count was very low, so before the surgery, he was given 2 platelet transfusions. Because this line could be easily disturbed, resulting in massive bleeding, it was necessary for Jay to stay in-patient until it was out. In fact, he needed to pretty much keep his leg straight, so he had to stay in bed as much as possible (not a problem, as long as he had TV and his Gameboy!). Also whenever he was transported to his radiation treatments, they used a stretcher instead of the usual wheelchair.

So, on Wednesday, Feb. 12, Jay was hooked up to the leukaphoresis machine for 3 hours. This machine separated Jay's blood, taking the white blood cells and returning the other parts to him. Later that day, after analysis of the blood, it was discovered that an insufficient amount of stem cells (in fact, none) were collected. This is not unusual, particularly since he had recently received a high dose of chemotherapy. Most patients typically take several days of leukaphoresis to collect enough cells. The plan was to try again the following day. Later that night Jay had another transfusion of platelets. After doing some kind of blood test the next day, they determined that it wouldn't be worthwhile, so harvesting will be attempted later next month.

Jay could not have been happier about the harvest being postponed. As long as the femoral line was still in place, he would have had to stay in the hospital. Jay had big plans for Thursday, Feb. 13 , but with the harvest postponed, the femoral line was removed and a mad scramble by doctors, nurses, and me ensued in order to get Jay discharged from the hospital and to his event on time! A special screening of a new movie "Daredevil" was being shown just for the teenage patients from Sloan-Kettering. It was held at Planet Hollywood in Times Square, and we were given lunch first. The stars of Daredevil - Ben Affleck, Jennifer Garner, and Michael Clark Duncan (The Green Mile) - were there to meet the kids. They signed autographs, posed for pictures, and talked to the kids and answered questions about the movie and themselves. There was a lot of media there, and Jay was one of 4 kids picked to be interviewed after watching the movie. Although I didn't see it, someone told me that they saw the story (and Jay) on one of those entertainment shows (like Entertainment Tonight and Access Hollywood, though not exactly sure which one).

The next day (Valentine's Day) we went to the clinic to get his counts checked. Jay's hemoglobin was a little low the day before, so everyone was expecting Jay to need a blood transfusion. Luckily, his counts had risen, so no transfusion was needed. Later that afternoon, Jay had a visit from Steve Holmes, one of the directors of the Maryland State Boychoir. Steve had been in NYC all week attending a conference, and was nice enough to take some time out of his busy schedule to come visit Jay. Actually, this was the 3rd time that Steve has been here. In addition to the AMAZING birthday party that MSB threw for Jay last March, he came up one day in January, with Darius (Jay's friend from MSB) and the wonderful Melody Bell!

Later that night, Jeff came up for the weekend. It was a fairly quiet weekend, until the big snowstorm. Jeff was planning to leave on Monday, as he had to fly out from BWI on Tuesday to attend a conference in Florida. However, with the big storm, it was clear he wasn't going anywhere that day.... except for the clinic, that is! We all trudged our way through the storm for Jay's appointment at the PDH. Unfortunately, he needed 2 units of blood, so we spent from noon until 6:00 pm at the clinic. Jeff was able to get home on Tuesday, and the rest of the week was pretty quiet - just bloodwork in the clinic.

I want to hurry up and post this update. I've taken longer than I had hoped to finish, so I will post again in the next few days to catch up on more recent events.

Thanks for visiting, and please sign the guestbook.

Virginia

Friday, February 21, 2003 3:04 PM CST

I have added some pictures to the webpage (thanks Rich!).

Here is one last article about Jay and the New York Rangers. It appeared in The Washington Post on February 13, 2003.

washingtonpost.com
Glen Burnie Hockey Fan Scores a Goal
Boy Battling Cancer Named Honorary Rangers Captain at Fundraiser

By Stephanie Staal
Special to The Washington Post
Thursday, February 13, 2003; Page AA03


One chilly morning last month, Jay Barnett, 14, and his mother, Virginia Barnett, set out for what would be one exciting day.

Bundled up in their winter gear, the Barnetts, of Glen Burnie, walked the six Manhattan blocks from the Ronald McDonald House -- a residence for young cancer patients -- to the famed Memorial Sloan-Kettering Cancer Center.

There, they waited to learn whether Jay would have to remain at the center for a blood transfusion or more chemotherapy. Tests showed Jay's blood was fine.

Perhaps more so than the other days, Virginia Barnett let out a sigh of relief.

That day was to be a special one for her son. A hockey fan, he was about to be named honorary team captain of the New York Rangers.

Barnett had worried that her son would be too sick or too tired to make it through the day. But on this day, Jay, who suffers from a relatively rare form of cancer called neuroblastoma, said he was feeling okay.

So that evening, as a gentle snow started to fall, Jay mustered all the strength he could and skated onto the ice rink at Rockefeller Center with several members of the Rangers. He skated as part of the ninth annual Skate With the Greats, a fundraiser for the Ronald McDonald House of New York City that brought in about $250,000.

"These children [from the Ronald McDonald House] are the biggest inspiration, the way they stay strong despite everything they're going through," said New York Ranger Brian Leetch, who was co-host of the event with Hall of Famer Rod Gilbert. "We get out on the ice, and even if they aren't feeling well, they push right through."

The staff at Ronald McDonald House selected Jay from among the children as honorary captain because of his outgoing personality and quick sense of humor.

"Every year there's always one kid who really shines," said Rich Block, the program director. "And he was the one."

"Jay's a talkative kid," Leetch said. "He had a couple of one-liners ready for me when I met him."

Jay gave a sample of his quick wit. "I went to see the fight," he said, poking fun at the sport's reputation for brutality, "and the hockey game broke out."

The teenager's sense of humor has been a nice diversion from the difficult times he has faced since cancer invaded his body and life about 13 months ago.

Barnett recalled that her son was in gym class at Lindale Middle School in Linthicum when he hurt his back. After class, he began to complain of flulike aches, which continued for several weeks until one night he developed a fever and was in so much pain that he could not move his legs.

Thinking her son had suffered a slipped disk or other type of injury that day in gym class, she took him to the doctor. The family received the unexpected diagnosis.

The news went from bad to worse. As in 70 percent of neuroblastoma cases, doctors told the Barnetts that Jay's cancer had spread throughout his young body. Tumors had rooted in his stomach and consumed his adrenal gland, and cancer had infected most of his bones.

"One day he's fine, and the next day I find out he has a very difficult type of cancer," Barnett said. "It was devastating."

Neuroblastoma, which attacks the nervous system, is usually detected in children younger than 5. Jay was diagnosed at 13.

Barnett said when she first heard Jay's diagnosis she started to think the worst.

"But instead of dwelling on those thoughts, I try to be more positive and focus on what we need to do to get him better," she said.

Fighting her shock and grief, Barnett left her job at Global Payments in Owings Mills. She moved with Jay to Manhattan, where he could undergo treatment with a group of doctors at the Memorial Sloan-Kettering Cancer Center, which specializes in neuroblastoma.

Barnett explained that because neuroblastoma is an aggressive cancer, Jay's treatment has been intense. Since January 2002, he has undergone two surgeries and had 10 rounds of chemotherapy and six rounds of a treatment called immunotherapy. Soon, Jay will start radiation, and he may eventually need a stem cell transplant.

"He's been through a lot," Barnett said. "And he still has a ways to go."

Throughout Jay's treatment, the Ronald McDonald House has been a great source of financial and emotional support, Barnett said. Established in 1978, the 84-room, red-brick building on Manhattan's 73rd street is the largest Ronald McDonald House in the country. It is one of two houses to take in only children with cancer, said Vivian Harris, house president.

With private rooms priced at what families can afford and most cancer treatments taking about six months, competition to get into the house can be tight. Prospective tenants must be referred by a social worker.

"We are turning people away all day, every day," Harris said.

Aside from the financial break, Ronald McDonald House residents say they benefit from the emotional support they get from other families coping with their children's cancer. Special events such as Skate With the Greats and the occasional celebrity visit help to boost the youngsters' spirits. Since he's been at the house, Jay has met actor Michael J. Fox, "Saturday Night Live" cast members and pop singer Britney Spears.

Still, mother and son said they miss home, the trees and the grass, and their family and friends. They also miss the small daily routines -- such as going to work and school -- that they once took for granted.

If all goes well, Barnett said, Jay will return to Glen Burnie in six months and resume his classes.

Jay, for one, said he's eager to rejoin his Boy Scout troop and sing again in the Maryland State Boychoir.

"We plan to spend a lot of time with the people we love," Barnett said, "and just enjoy being with them."



© 2003 The Washington Post Company

Thursday, February 6, 2003 6:13 PM CST

Just as expected, Jay developed a fever last Sunday. We spent all day in Urgent Care (MSK's version of an ER), where they started him on antibiotics and fluids. He was finally moved to a room on the pediatric floor just after 11:00 pm. Since Sunday, Jay has had a fever off and on. His mouth sores (another side effect from chemo) have not been too bad and are not preventing him from eating most things. Even though he is an inpatient right now, he feels just fine. In fact, as I write this, he is hanging out in the playroom. There are times during his treatment when he feels very bad - whether it is pain from the antibodies, or nausea from chemo, or something else - but he is not hospitalized. (Approximately 90% of the treatment protocols are handled on an out-patient basis, to avoid prolonged hospital stays. Actually, that works out fine for us, as we would much rather spend our evenings in our own room at Ronald McDonald.) Then, when he is admitted (almost always for neutropenic fever, like now), he feels fine.

Jay will not be released until his WBC and ANC comes back up and he is fever-free for 24 hours straight.. Right now, counts are 0.1 and 0. I doubt that he will be out until Saturday or Sunday at the EARLIEST. In the meantime, he gets almost continuous drips of antibiotics, and daily injections of GCSF, which is a WBC booster. Because the doctors are hoping to start harvesting his stem cells in the next week or two, his GCSF dose is being tripled. Monday, Jay's nurse came in to give him his shot, and would you believe - he wanted ME to give it to him! I guess because I am the one who usually gives him injections, he was more comfortable having me do it. In the past, as long as you had "RN" or "MD" after your name, Jay felt "safer". I guess he has finally realized that I know what I'm doing after all!

Jay started radiation treatment on Tuesday. Twice a day for 7 days he will receive radiation to his skull. The treatments last about 15 minutes, and really, most of that time is spent by the technicians changing equipment positions in between the 4 different areas that are radiated. So far, it has gone well. Again, if he had not been admitted for fever, he would have done this out-patient. We would have gone back and forth from Ronald McDonald to the hospital twice a day.

Since last Thursday, Jay has had 3 transfusions of platelets. Friday, at his appointment at the PDH (Pediatric Day Hospital, or clinic), he got one unit of platelets. Sunday and Tuesday he also received platelets. Tuesday he also needed a blood transfusion, since his hemoglobin was low. This is all very common after chemotherapy. He has received numerous transfusions over the past year.

There was another nice article about Jay and his night with the NY Rangers. It appeared in our local paper, The Maryland Gazette. A copy of the article follows this update.

Please continue to keep Jay in your prayers, and also for some of our friends we have met here, Daniel, Christi, Willie, Sophia, Anthony, Michael R., and John K.

Please sign the guestbook!

Virginia



14-year-old Glen Burnie patient
receives honor from New York Rangers
By JENNIFER DONATELLI Staff Writer


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Popping flashbulbs. Television cameras. Reporters clamoring for interviews with the star hockey player.
Jay Barnett was in the middle of all of it Wednesday night in New York City.

At 14, Jay isn't quite old enough to play for the New York Rangers. But that didn't stop Rangers' defenseman Brian Leetch from naming the Glen Burnie boy an honorary team captain.

"It's pretty amazing with all the cameras there. Brian's really nice. I was hanging out with him and stuff," said Jay, the only person to receive the honor this year.

For the past year, Jay and his mother, Virginia Barnett, have put their lives on hold while he is undergoing treatment for neuroblastoma, a rare cancer that attacks the nervous system and is usually in children.

Because Jay is being treated at Memorial Sloan-Kettering Cancer Center and the family needed some place to stay, they found the Ronald McDonald House of New York City.

It was through the nonprofit New York branch's work with the Skate With The Greats program that Jay received the honor.

"He was really excited. A lot of media were interviewing him, so the kids were trying to figure out who he was," Ms. Barnett said. "And Brian was very nice."

Skate With The Greats began in 1994 when the Rangers and the Ronald McDonald House of New York City were looking for a fund-raiser to benefit the house and raise awareness of its services, according

to information supplied by Ronald McDonald House.

Jay, who would be a North County High School freshman had he not missed most of his eighth-grade year at Lindale Middle School, said dealing with such an aggressive cancer is overwhelming at times.

Not only does he miss his friends in Glen Burnie, but because many of the Ronald McDonald House patients are younger, there aren't many kids his age to hang out with, he said. And although he participates in the facility's tutoring program, it's not the same as school.

"It's hard. I don't get to see many young people," he said. "I don't mind repeating another grade, but I don't want to be two behind."

Ms. Barnett said she's proud of how Jay has handled his situation. As a way to cope with his illness, they've taken in the city's sights and gone to some Rangers games.

"He has to go through a lot and does it without complaint," she said.

For his part, Jay said if he could tell his friends one thing, it's not to take life for granted.

"Be grateful for your health and stop whining all the time," he said. "I just do it. I just let them do it, whatever they have to do."

---

jdonatelli@mdgazette.com


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Published 02/01/03, Copyright © 2003 Maryland Gazette,
Glen Burnie, Md.

Thursday, January 30, 2003 at 10:33 PM (CST)

Hi Everyone!

Last night was a pretty exciting night. As you may have read in the paper, there was a fundraiser for The Ronald McDonald House of NY held at Rockefeller Center Wednesday night. It was called Skate With the Greats, and it was a chance for people to meet players from the New York Rangers (hockey, for those who don't know), get autographs, and bid on sports memorabilia, and other items. Proceeds benefit the Ronald McDonald House. Jay was chosen to be the "Honorary Team Captain"! We were taken to Rockefeller Center early where Jay was introduced to Brian Leetch, the Rangers captain, and future Hall of Famer. Jay was given one of Brian's jerseys, and they posed for pictures. Then they were interviewed live by New York's Channel 4 sportscaster, Len Berman. During the interview, and before, while we were with Brian waiting for the interview, there were a lot of people watching. They were all hockey fans who had tickets to the benefit, and were very curious about what was going on. Jay felt like a celebrity! Then, back at the party, there was a buffet dinner and open bar. We were getting ready to go skate, when Jay was pulled away for another media thing. I was already on the ice, when I realized what was going on, and I couldn't go see the interview with my skates on. Jay was on a stage with the Rangers and TV cameras and other media all over. After that, Jay and I skated on the famous Rockefeller Center ice rink. Some of the Rangers came out on the ice but really never got a chance to skate, because they were mobbed by people (mostly kids) getting autographs and pictures. A bunch of kids came up to Jay, not quite knowing who he was exactly, but they knew he was someone important because of all of the media attention. They thought that maybe he was Brian Leetch's son, but didn't believe Jay when he denied that. It was pretty funny. Later in the evening, a television crew came up to Jay and said, "Are you Jay? Can we talk to you?" It turned out to be ESPN! They interviewed him too. We probably won't get a chance to see all of these interviews on TV, but it was pretty exciting just watching it in person. Later, we all got another chance to talk to Brian and get autographs and pictures.

There was an article in last Sunday's Baltimore Sun. For those who didn't see it, I've copied it to the end of this update. (Melody Bell also provided the URL in her guestbook entry. Thanks, Melody!)

Last week Jay had his seventh round of high-dose chemo (his 10th round in all). His counts are low, and falling, and he is now neutropenic, but he is feeling great. You would never know that he just finished chemo. Usually, he would have spent the week feeling lousy, with a lot of nausea and vomiting. But, with his counts dropping, it's a certainty that he will be hospitalized sometime in the next few days. Eventually, he will develope a fever, and he will be admitted and given IV antibiotics. He'll stay in-patient until his ANC (absolute neutrophil count) is 0.5, and he has been fever-free for 24 hours. This is par for the course during chemotheraphy. In the meantime, I am giving him daily injections of a drug that will help stimulate the production of neutrophils, which are the infection-fighting white blood cells.

There is a "Norwalk-like" virus that has been going around the Ronald McDonald House. It is an intestinal virus that is highly contagious. Fortunately, so far, Jay and I have managed to avoid getting.

Thanks for visiting and please sign the guestbook!

Virginia


Glen Burnie teen fights cancer far from home
He'll be honored this week during event in New York
--------------------------------------------------------------------------------
By Dan Harsha
Sun Staff
Originally published January 26, 2003



Fighting cancer is never easy. For Jay Barnett, a 14-year-old cancer patient from Glen Burnie, the battle is even harder because he's hundreds of miles from home.

Paying tribute to Jay's determined struggle against cancer, New York Rangers defenseman Brian Leetch will name him honorary team captain at the Ronald McDonald House of New York's Ninth Annual Skate with the Greats Wednesday at Rockefeller Center's ice rink.

Jay has been living at Ronald McDonald House in New York City for the past year while undergoing treatment at Memorial Sloan-Kettering Cancer Center there for neuroblastoma, a rare and aggressive form of cancer that attacks the body's nervous system. He undergoes chemotherapy to help treat the disease three to five days a week.

"It's hard being away from home. ... The treatment is pretty exhausting," said Jay, who has had two operations and eventually is to undergo a bone-marrow transplant.

His mother, who left her job in Owings Mills, is staying with him at Ronald McDonald House, which provides subsidized housing for children and their families during cancer treatment.

"It's not easy. I left my job and regular life. This is my focus now, getting Jay better," Virginia Barnett said. "I feel being here in New York is the best thing for Jay."

The demanding schedule restricted Jay and his mother to four visits to Glen Burnie in the past year.

Though Jay hasn't been able to get home as often as he would like, he has had plenty of visitors, including friends from the Maryland State Boychoir, of which he is a member. The choir traveled to New York in March, threw him a surprise birthday party and sang for the residents of Ronald McDonald House.

"I'm real grateful to my friends and family back home," Jay said.

He and his mother don't know how much longer they will be in New York. He is eager to get back to Maryland, where he hopes to rejoin his Boy Scout troop and become an Eagle Scout.

"I can't wait to start Scouting," he said.



Copyright © 2003, The Baltimore Sun

Tuesday, July 02, 2002 at 03:28 PM (CDT)

Hello Family and Friends,

This last month has been VERY busy! Since the last update, we have spent nearly every day, ALL day either at or in the hospital.

Since I do not have time to write too much at a time, I will write a little about what went on during June. Later, I will catch up on the rest.

The week of June 3 - June 7, Jay started his 2nd round of 3F8 antibody treatments. (His first round was May 6 - 10). These treatments are typically very , very painful, and the patients are usually given strong narcotics to combat the pain. Even so, the pain is still very intense. The first week of 3F8, Jay was extreme pain for almost an hour, despite being given several doses of morphine. It was so bad, that even after getting home on the 1st day, the agonizing pain lasted for another 8 - 10 hours. Fortunately, for the rest of the week, the pain only lasted for about a 1/2 hour while he was in the clinic. This 2nd week of antibody treatment went much better, for the most part. Jay also required transfusions of platelets one day, and later in the week, he received blood. This is all par for the course, as he has had many transfusions since being in NY. Jay also had some tests done this week - a CT scan (follow-up from surgery) which showed no problems, and a bone marrow biopsy which came out positive for neuroblastoma. The doctor said that that was what they expected, as it takes a little longer to clear in the older kids. Although he couldn't (or wouldn't) quantify specifically, he did say that there was less involvement than in the previous biopsies.

The week was not without some fun. The Ronald McDonald House sponsered a trip to see a Yankee game on June 5. Lucky for us, they were playing Baltimore! (O's won). Our seats were in the bleachers right next to the Oriole's bullpen, so it was really neat watching the pitchers from close up, warming up. Jay wore his Oriole shirt and got a few waves and thumbs up from the Oriole pitching coach. Jay and a few of the other kids each received a game ball signed by a bunch of the Yankees. It was a nice evening. Then, on Friday, Jay's Grandmother Macleay and Jeff came up for the weekend. We had a nice time in Central Park on Saturday. However, Jay's favorite part of the weekend was playing Pictionary each evening. Between Jay's clever ideas and pictures, and Jeff's what-the -heck-is that-supposed-to-be? attempts at drawing (sorry Jeff!), it was quite a hilarious time.

The week of June 10 - 14, Jay started his 5th round of chemo. This particular combo of drugs is known to be extra hard on the stomach. By the middle of the week the nausea and sickness really took hold. At this point, Jay was up almost every hour through the night nauseous and vomiting. Then, after getting very little sleep, we would be up early for another 10+ hour day at the clinic. At the clinic, in addition to the chemo, Jay would receive hydrating fluids, and each day until Friday he would go home with the IV fluids for overnight. We were not in clinic on Saturday, but by Sunday, I could tell that Jay was pretty dehydrated; nothing was staying down. So... off to Urgent Care (Sloan's version of an ER) where we spent the entire day with more hydration.

Starting with that Sunday in Urgent Care, the week of June 16 - June 21 was spent in clinic all day, receiving hydration, and on Friday, a platelet transfusion. Finally, on Friday, the nausea left, and Jay was starting to feel a little better. For the first time in over 2 weeks, Jay (and I!)slept through the night!

Jay had a really nice weekend. Jeff and Grandma Macleay came back, and we went to Fire Island on Saturday. Every year, a very nice lady who has a house on the beach (ocean side), invites the Ronald McDonald House for a BBQ. We took a charter bus to Long Island, where we took a ferry across the bay to Fire Island. The volunteer fire department met us at the ferry landing and took us to the beach house. We spent a nice day on the beach, and were hot and tired by the time we got back to the city.

I will continue this as soon as I can. Thanks for visiting our website, and please sign the guestbook.



Virginia

Friday, May 31, 2002 at 03:41 PM (CDT)

Hi Everyone!

Jay was discharged from the hospital yesterday, so we are back at the Ronald McDonald House. He is not neutropenic anymore, but he has a common intestinal infection as a result of all of the antibiotics he takes (the infection is not bothersome for him). So, he will be taking one particularly nasty tasting pill 3 times a day for the next 8 days, and he also will continue vancomycin by IV every 12 hours until Saturday night. And, in addition to preparing and hooking Jay up to his TPN every night, now I will be giving him the IV antibiotic. But, it is nice to be out of the hospital.

Today it is very warm outside. There is a pet store about 13 blocks from here that Jay likes to go to. We walked there and Jay played with 2 of the puppies. Unfortunately, Jay wasn't feeling as well today as yesterday, so we cut our trip short and took a cab back to RMDH. Monday Jay starts his 2nd round of antibody treatments, so, hopefully, he will start to feel better soon and have a good weekend before it's time to go back to the clinic.

Please sign the guestbook. We like to hear from you all too!

Wednesday, May 29, 2002 at 09:48 PM (CDT)

Hi Everyone,

Jay is still in the hospital, but I heard a rumor that he may be released tomorrow! His WBC count today was 1.1! He took a long nap today and when he woke up he was surprised to see his Uncle Ken sitting next to his bed. Ken decided to take the day off from work and drive up from Baltimore to see Jay. He left to go back home a couple of hours ago.

Jay is starting to act like his old self. Earlier tonight he was enjoying a meal of New York strip steak and broccoli, while having an intense discussion about Star Wars with one of the nurses!

Virginia

Wednesday, May 29, 2002 at 09:48 PM (CDT)

Hi Everyone,

Jay is still in the hospital, but I heard a rumor that he may be released tomorrow! His WBC count today was 1.1! He took a long nap today and when he woke up he was surprised to see his Uncle Ken sitting next to his bed. Ken decided to take the day off from work and drive up from Baltimore to see Jay. He left to go back home a couple of hours ago. Good news - Jay's appetite is coming back. Tonight he was enjoying a meal of New York strip steak and broccoli.

Monday, May 27, 2002 at 02:14 PM (CDT)

Hi Everyone!

Again, I apologize for waiting so long before adding an update. I wanted to first summarize what Jay's been through since he was first diagnosed with neuroblastoma in January. I'll do that later as I don't have too much time right now.

Jay was admitted to the hospital last Tuesday with a fever. This was following his 4th round of chemo. His fever is gone now, and he is feeling pretty good, but his counts are still low (0.1 today), so he will stay inpatient until they come back up. In the meantime, he has had blood and platelet transfusions Saturday and today. The nausea that he has battled daily since his surgery on April 23, is gone! For about the last week, though, Jay has had some painful mouth and throat sores. Thankfully they are starting to get better, although he still has a burning feeling in his throat sometimes. Yesterday we went to the 15th floor lounge where Jay played 3 games of pool with Jeff and me. Then he watched "The Patriot" with Jeff. (Too many battles for me, but right up Jay's alley!) Right now, Jay is asleep. Some of the pre-meds he gets for the blood make him very sleepy. That's all the news for now. Thanks for visiting the website! I'll post more later.

Virginia

Wednesday, May 22, 2002 at 01:42 PM (CDT)

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