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New York… Memorial Sloan- Kettering
SEPTEMBER 2003 – SCANS AND BONE MARROWS IN NY
We're back from the big city. First I'll tell you about the good news then I'll tell you about the trip. The scans (so far) have come up clean. We are just waiting for results from the bone marrow aspirations and then Joseph will begin the antibody treatments. This could start within the next two weeks. All tests went well for Joseph. He adapted well to the new environment. He had one or two days of minor pain from the bone marrow biopsies, which they take from the front and back of his hip bones. The hospital is extremely crowded and there is lots of waiting around, but it’s the place to be. There are lots of activities, clowns, music, and snacks to pass the time. The Neuroblastoma team is excellent.
Our trip to NYC was lots of fun for the family. After hanging out at the hospital we took off to see the sites. The boys were fascinated with all the taxis, crowds of people and tall buildings. We were able to go to the top of the Empire State Building, the "Toys R Us" indoor Ferris wheel, Time Square, Planet Hollywood, Ground Zero, and a picnic supper at Battery Park overlooking the water to the Statue of Liberty. Our last night there we were happy to be able to go to dinner with our nephew, Brandon, whom lives and works in Manhattan.
The next step is to wait for the call from the Oncologist in NY. He would like to start treatment within the next two weeks. I will start giving Joseph GM-CSF shots to build up his white cell count before treatment begins. We are very nervous, but the doctors think Joseph will do well.
I thank all for your support. You have held my spirits high. Thanks for the cards, emails, and most of all, your prayers. I don't know how I would go through this without my faith in God and you, my friends.
Holly
OUR PLAN TO MEMORIAL SLOAN-KETTERING TO BEGIN 3F8 Protocol
We are on schedule for New York. Vin, Joseph, and I will be driving out on Sunday to check in at The Ronald McDonald House. Monday morning Joseph will have his first antibody infusion. If you are interested in more information regarding this antibody, click on the mskcc.org site.
We've all been busy preparing for the trip. Joseph is excited to travel to the big city again. The boys will join us for the long weekend. We had such a memorable trip with our family last time.
The boys will be home with Uncle Mark until Vin returns home on Wednesday. The boys will be busy the next couple of weeks. They are both enjoying art class and will be submitting artwork in the Westford Regional Art Show, Stephen is auditioning for a play in town, and both boys have recently joined the school newspaper as Reporters. Now that ought to keep 'em busy. Now, before this starts sounding like a Christmas letter I'll stop babbling about my boys. I just wanted to update you on what they are up too.
If all goes according to plan we should return home on the 18th. We'll be home for three weeks and then we'll repeat the process. During the three weeks home we will go to Boston for one week of radiation. I'll fill you in on that later.
Take care and happy Fall (burr!),
Holly
THE FIRST 3F8 TREATMENT – OCTOBER 6, 2003
Well, the treatment itself isn't at all what I thought it would be. He was in quite a bit of pain during the infusions. The good thing is that he doesn't remember much about treatment because he is heavily medicated. We were released everyday about 3:00 and we would head back to The Ronald McDonald House. Joseph did not feel well enough to see the sites so, we saved that for the weekend when the boys came. During the week, Joseph would complain of different aches and pains until about 7:00pm and then he would wake up a new kid. He was Joseph. We would spend our mornings sleeping in, crafting, goofing around, or going out to breakfast. We'd head back to the hospital around 10:45.
The second week of treatment was a little better than the first. I guess it takes a while to adjust medications to see what works best for Joseph. After the first week we learned a lot about his tolerance for pain and tolerance for medication. It is extremely difficult to keep a 3F8 patient completely comfortable.
Vin and the boys joined us for the long weekend. We had a great time in the big city and Joseph was feeling great.
We will return to New York in three weeks (November 10th). In the meantime, we are scheduled for radiation in Boston beginning next week. Joseph will have radiation on the relapse site (neck/chest) twice a day for seven days. Then we head back to New York for the second round of 3F8.
Joseph is doing great at home and is attending pre-school this week. I got home just in time for the last day of the Regional Art Show to see the boys art work. Stephen is thrilled that a local artist left a note on his sketch wanting to purchase it for her art collection.
I'll be in touch soon.
Thanks so much for your support. Love and kisses from Joseph.
Holly
November/December 2003 - Christmas in the City
The months of November and December came and went. We were traveling to NY every three weeks, staying there for 2 weeks. We were lucky enough to travel home on Christmas Eve to be in our home for Christmas morning. The 3F8 treatments were heroic. Joseph (and all other 3F8 patients) are in a lot of pain during infusions. Usually, during the flush (finish of drug), Joseph would require rescue medicine including; oxygen and/or nebulizer treatments, pain medication, antihistamines, and anti-nausea medicine. We would be discharged everyday at about 3:00 (depending on his condition). He would be somewhat weepy and/or grumpy from the drugs and would sometimes sleep it off. Joseph usually perked up around 6:00 or 7:00 (just in time for a RMDH event). The RMDH is very good about keeping the families entertained. Volunteers came in throughout the holiday season with a good meal, a craft, baking fun or had a gift giving party. The city was beautiful this time of year.
January/February 2004
We were excited to finally get to his 4th round of antibodies. This was the goal that he needed to reach for best results of the 3F8 (40 infusions without reaching HAMA). The Oncologist decided that we should come back in 3 weeks rather than 8 weeks (per protocol) because Joseph has always been a concern. He is stage 4 Nbl (disease is widespread) and since his last 2 or 3 MIBG's have shown a misterious hot spot in his abdomin, the doctor thought it would be best to continue with more frequent 3F8 treatments.
More bad news
On February 16th and 17th, Joseph had his bone marrow biopsies and CT scan. The results were negative for Nbl findings. We came home to finish off the school vacation and then Joseph and I headed back to NYC on Sunday. He started 3F8's on Monday, 2/23/04. Wednesday morning Joseph had an MIBG (body tissue scan) and then 3F8 infusion. Thursday morning we got up to go to breakfast and the hospital called. Our plans had drastically changed. Something showed up on the MIBG and he needed to have more tests right away. We rushed to the hospital to have a 3D bone scan. Joseph was so good for all the tests. He had to lay still for sometimes more than an hour with a camera almost touching his nose. Anyway, the results were very discouraging. The findings of neuroblastoma are about 90% positive in his thigh and elbow and his abdomin is still questionable. The 3F8 treatments were stopped and we were sent home. Vin and the boys came in on Thursday (to celebrate my birthday - ha ha). Joseph and I were headed to the Silver Spoon for breakfast and instead went there for supper with the boys. We are not sure what the plan is next. Before we left Sloan Kettering, Joseph had a 2 hour MRI. We are anxiously waiting for results. After his Oncologist reviews the MRI and previous tests he may have a plan. Maybe more radiaiton??? Chemo??? We just don't know at this point. Despite all this, Joseph is feeling good (aside from a little cold) and is as active as normal. He looks good and feels good, which is a good sign. Hopefully, we will hear from the doctor soon and I will keep you posted.
Holly
March 2004 - 3F8’s fail to his disease
We received word that Joseph's MRI did come back with positive abnormalities. It confirmed findings of Neuroblastoma in his thigh, hip/abdomen and elbow. He has been removed from protocol in NY. Unfortunately, the antibodies did not work for Joseph. He shows more disease now than when he began. His cancer is a very hard cancer to completely kill. He is Stage 4, (this is widespread throughout his bone marrow) and he has relapsed twice after intense treatments. The doctors are concerned and so are we. Joseph's team in Boston will take over his treatment from here. The Oncologist is exploring some different options for Joseph's treatment and Vin and I will see him next week to discuss a plan.
Thank you for keeping us in your prayers. It has been almost 2 1/2 years since his diagnosis. We need strength to move on and continue to fight this battle.
Holly
See Boston March 2004
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