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Tuesday, August 15, 2006 11:34 AM CDT
Today, August 15th, we will transform our sadness of missing our hero into a positive form of energy.
We continue to concentrate on the 5 ½ wonderful years Joseph gave us and focus on the celebration of his life. I am happy to share his life with you and celebrate his birth, a gift to us all.
Happy Birthday Joseph!
Friday, March 31, 2006
There is not a minute that goes by that we are not thinking about our Joseph. He remains a huge part of this family. His influence has changed the way we look at life. I am so proud to have been his mom. I cherish Gods gift for his life that he had with us on earth. His pictures with that infectious smile, makes us smile. It is still quite an effort to continuously keep our heads up, but thanks are to God for re-directing our energy into hopes and dreams.
Thursday, December 15, 2005 7:48 PM CST
I opened my mailbox one day
There an anonymous letter lay
I read it to say:
“You don’t know me and never will.
You don’t owe me and never will.
But my wish for you this next Christmas day
Is that a Therapy Dog come your way.
So, when the time is right and you all agree,
Go pick out a dog for you and your family.
May he bring you laughter and lots of joy.
And fulfill your dream of helping other girls and boys.”
And to my surprise
A gift check blessed my eyes.
A Coton is the breed
For all the kids in need
We search, we wait, and we interview
When the best puppy comes in to view
We’ll train, and we’ll love
Because of our gift from above
Whoever you are, whether near or far
Your gift was well over par
As this puppy sits on a hospital bed
I’ll think of you and my wish that you fed
To you I am grateful… Thank You so much!!!
My family has wanted a puppy for a very long time. Now, we all agree… the time is right. I have had dreams of training a dog to be able to visit sick children in the hospital and at the same time getting my boys a cute little friend. I have done research on dog breeds, therapy training, certificates, etc. to make this possible. When Joseph was in treatment, he adored “Piper”, a therapy poodle that came to the hospital. Joseph was also thrilled to be part of the “On Course for Kids” program. OCFK is where he met “Tango”, his Dalmation friend. I saw his face and how happy he was having a doggy friend. I hope to share the warmth and happiness that a little pooch can bring.
What’s new??? Let me answer the obvious… We survived the Thanksgiving holiday, thanks to our loving, caring family. And I am sure we’ll survive Christmas day as well. To be honest, I think the pre-Christmas stuff is the difficult part. We really didn’t feel like going through last years decorations so, we didn’t. Our tree looks different this year, but just fine. Every situation, since Joseph passed away, is and will be different for us. We can’t help but to miss his presence, but we do cherish the precious time we had with him and that is locked in our hearts forever.
The boys are doing very well. Stephen has resumed his art classes and continues to amaze us with his artistic ability. His art teacher is spending some extra time with him to work on some illustration techniques for “Joey’s Blood Buddies.” It’s coming along nicely so far. We hope to see publishing in the near future. Michael has been a HUGE help with his computer expertise. Vin and the boys got me a domain for Christmas and Michael has been my web master. He has taught me everything I know about newest software, Photoshop and troubleshooting (most of the time the troubleshooting results turn out to be the operator) and now I am learning to publish things on my site. I will keep you up-to-date as to when the site is up and running.
From the Messina Home to yours, we wish you a happy holiday season.
Monday, September 26, 2005 3:34 PM CDT
On September 10th, my friend Sue formed a team to ride for “The Cycle for Life,” which will benefit The Floating Hospital’s Child Life Program at the Children’s Cancer Center where Joseph was treated. Riding 25 miles through the scenic Salem area were Sue, her daughter Jessie (11), her friend Brian and his son, Kyle (10). Sue’s brother David and his son, Sam (12) rode the coastal 50-mile route from Marblehead through Gloucester. The six bikers together raised over $2,100.00. My family enjoyed working at the 12-mile checkpoint at the beautiful Manchester beach. We all met back at Devereux Beach for a post-ride barbecue. It was so nice to catch up with some families and friends of our wonderful clinic.
Joseph’s memorial monument arrived on Friday. Seems silly to be excited about it, but we are so pleased with the finished product. I thought I would cry when I first saw it there and the truth is, I was in awe of its beauty. A blue butterfly was etched into the corner of his headstone and one on the flat marker. We can now visit the cemetery and look at this monument that we created to be so special for him, to honor him. I am happy to be able to plant and groom his lot, as if to take care of him. We have made pictures available on Michael’s web site for those who live out-of-state or are unable to visit the cemetery. You can find it at: www.mike-messina.com/Pinegrove. Thanks go to Hudson Monuments for their service and proficient artwork.
The boys are definitely 13 and sprouting. They are now my height (Yes! I’ve been waiting to steal their sweatshirts and Red Sox jackets.) and the voices are getting deeper. They seem to be enjoying the school year so far. I don’t think they would admit to that, but I’m not hearing any complaints and they’re bringing home good papers. Michael is still dabbling with designing web sites for family and friends. He has a domain of his own at www.mike-messina.com. He sets up links from his site to Joseph’s Caringbridge site (such as: Pinegrove and Joseph’s birthday pages). Stephen is preparing some sketches for the upcoming Regional Art Show. His latest drawing is on this site (see above).
Thanks for checking in with us.
Saturday, August 13, 2005 9:10 AM CDT
Preparing ourselves for Joseph’s heavenly birthday has been mentally challenging. We have come to a level of grief that has proven much difficulty. Currently, I believe that we are in training, learning how to live a new “normal” life (table for four, etc.). We find ourselves busy, laughing, spending time with friends, going on vacation, but not without constant thoughts of Joseph. That’s OK because we will remember him and carry him in our hearts forever… we just need "time" to teach ourselves how to learn to live life with the pain of missing him. Each day is a test of courage and strength to face our world.
God did not create cancer nor does He have the cure. But I do believe that He called Joseph to Him and He will provide comfort for us.
On Joseph’s birthday, we will visit the cemetery to send up helium balloons filled with “forget-me-not” seeds.
Thank you for checking in on us. We appreciate you so much!
Friday, August 11, 2005
Check back tomorrow... there's more to come.
Saturday, May 14, 2005 9:46 PM CDT
It was definitely a different kind of Mother’s Day this year, but of course, every day is different now. I was still able to smile this Mother’s Day, as Joseph would want me to do. We are all finding our own ways to learn how to live with this feeling of emptiness. Joseph taught us a lot about living. Even with pain, he kept on looking for fun, no matter what. Our pain is different than his was, but we need to keep on living, no matter what. Me, Vin, and the boys are very expressive with each other as to how we are feeling. We just have to allow the grieving to take its course. As you would imagine, we have good moments and bad... when we feel like crying we cry and when we feel like laughing we laugh. Michael and Stephen do a great job at keeping us laughing. We are trying not to fill the calendar and rather deal with each day as it comes. We have great memories of Joseph and we are comfortable talking about him and remembering him.
Friday, April 8, 2005 6:45 PM CDT
As you can imagine, our hearts ache from the loss of our little hero. We feel privileged to have had Joseph by our sides for almost 5 ½ years. He was determined to live life to its fullest and keep his sense of humor through the toughest of days. Although he is no longer with us his spirit will be with us for a life time. I do not want to think of him as “losing his battle” with Neuroblastoma, because he never let it get to him. He lived life to its fullest. He was a victim of a horrible childhood cancer that took his precious life from him.
The service for Joseph was just as he would have wanted. Pastor Gary Moore captured life after death using the words, “we are in the land of the dying... he is in the land of the living” and he quoted powerful scripture, one being John 14: 1-7. God has prepared a place for Joseph and He has come for him. Susan Upham, Linda Moore and Kathy Oliver did an outstanding job projecting their voices and music with songs of praise. Dr. Wolfe could not have described Joseph’s vibrant personality any better. Stephen and Michael had independently written a eulogy for their brother that I would like to share with you...
read by Pastor Gary Moore:
Written by Stephen Messina, 12 years old, April 2, 2005
Joseph was always in a hurry, always running, getting things done, as if he was trying to squeeze in his whole life, like as if he knew he was gonna die- My brother, Joseph Messina died Thursday, March 31, 2005.
Without great love and support from family members, and nurses in Boston helping us through this, Joseph, me and my brother Mike, also of course my mom and dad, would not have gotten anything out of this journey . My family would not have survived this without you guys, and I thank you again. People at the Stony Brook School in Westford, teachers and friends, have also been a great help. My family now has many freedoms, many losses, and many broken hearts. Life will be different, not the same, but we will enjoy it anyways, because the happy memory of that smiling face on Joey, remains in our hearts, and will always. Thank You everybody for coming today.
Read by Michael Messina:
Written by Michael Messina, 12 years old, April 2, 2005
Hello, I am Michael, Joseph’s brother. Joseph was a very humorous and happy kid. My greatest memory of him was when we had a snowball fight that lasted hours. We built a snowman and a snow fort to hide in. This was one of his good times. There were times that were happy and times that were sad. Joseph never showed how sick he really was. He didn’t deserve this cancer... really. He was comfortable on Thursday night when he left us and it is good to know that he is not in pain anymore. I will have to learn to live without Joseph and this may take time, but I will go on with life. I’m sure that we all will never ever forget Joseph. Thank you for coming here and comforting our family. Don’t ever forget Joseph’s happy face.
The funeral precession was lead by Officer Swift, father of Madison Swift (NB buddy from clinic), followed by Westford Fire Truck (FF/EMT J. Sheridan), Police and Fire Honor Guards of Auburn, MA (co-workers of Uncle Joey) and many friends and family. As we past the Westford Fire Department, Engine 8 (Joseph’s favorite truck) and the T1 were outside with his FF friends waiting for us to pass by. When we arrived at the cemetery, waiting there was “Tango”, Joseph’s favorite dalmatian. Joseph and Tango were matched up at the “On Course for Kids” agility through the clinic. Turns out “Tango” lives one mile from our home.
Michael and Stephen returned to school. They were greeted and welcomed back with posters and cards. They came home in good spirits. This has been hard for them, but they have done an outstanding job directing their energy towards living and helping other kids with cancer.
The Tufts NEMC - Floating Hospital staff deserves a high five for providing our son with the best possible TLC during his journey with neuroblastoma. And thanks so much Dr. Grodman and Cathy Downing. I could go on forever thanking people for the special care that Joseph received, but you’d be reading forever.
We'll say goodbye for now, but will keep up with this site to continue to share our lifes with you. Thank you for your comforting messages.
Written by Brandt Watson of Westford, 10 years old, April 1, 2005
To this little boy who no longer has his say
We grieve for this little boy who just died yesterday
His heart as pure as gold
His voice had more to say
And if you can hear me now,
I’ll miss you more each day
Thursday, March 31, 2005 9:54 PM CST
Hello. This is Mike, Josephs brother. I walked home today from my bus stop and my uncle was at my house. He took me to Bainbridges Restaurant in Chelmsford. At the restaurant, my mom called and we had to leave our meals and go to the hospital. I drove 1 hour into the hospital and went to the 6th floor, the PICU (Pediatric Intensive Care Unit). I pushed open the glass doors to Joseph's room and found little Joseph lying on a bed with a very lound pumping noise (the respirator). Everybody was very scared. Me and my family decided that it would be best to turn everything off. There was nothing else the doctors could do. It was very hard. I saw his stomach going up and down slower. We watched Joseph pass away at 7:28 tonight and my mom held him in her hands. We got a handprint of him to put in a special box forever. I think it was way too early for him to go away. Everybody was acting all sad everywhere we go. We went home.. just the four of us. I feel okay now. I might not be in school for a little bit. We will post the funeral stuff soon. See you later.
Friday, March 25, 2005 10:56 PM CST
On Monday, Joseph underwent a lung biopsy. The docs were concerned that he may have an infection that has progressed in the past two weeks. The biopsy confirmed that he has neuroblastoma in both lungs. Joseph will soon begin a slightly more aggressive treatment, possibly this weekend. But of course there is always a bump in the road along the way. After Josephs lung biopsy he recovered in the PICU for a couple days and then returned to his room. On Thursday, the surgeons removed the tube. All went well… until… another “Joseph nose bleed”. His nose bleeds way in the back, so most of the blood ends up in his belly. He started vomiting blood and aspirated into one of his lungs. He began having a hard time getting oxygen and was still loosing blood. He ended up going to the PICU and was then put on a ventilator and an NG tube to drain his belly of blood. He was purely exhausted from the days events and this was the best thing for him. We were so scared, but today feel so much better that he is so comfortable. They experimented with turning the vent down and he started taking some breaths on his own. The docs think that his breathing status will return to normal and he will be able to start chemo while in the PICU.
I’ll keep you posted! Thanks for checking in and Happy Easter.
Tuesday, March 22, 2005 9:23 PM CST
This is now week 5 that Joseph has been in the hospital. Although we seem to have the pain under control he's still spiking fevers on a regular basis. On Monday, March 21st, a biopsy was performed on Joseph's right lung to determine the source of some nodules that showed up on recent CT scans. He is currently recovering from that surgery as we wait for pathology to report on the findings. If it's a fungus, which is what was originally thought, then dr's can pinpoint a remedy before we advance to another therapy. If it's Neuroblastoma, then we move to that therapy sooner which would include stronger chemo. As always, the dr's and nurses at the Floating Hospital continue to love and care for Joseph as they maintain his comfort and search for a treatment that will get him back on his feet. We maintain our strength through the continued support of family and friends, and those who drop by this web page and offer words of encouragement.
Saturday, March 12, 2005 8:30 PM CST
The past few weeks have been quite challenging for Joseph and for our family. He did start chemo (Zometta and Cytoxan) on Thursday, March 3rd. He is doing well on this chemo and began to show signs of improvement last weekend. However, on Monday, another horrible, ten hour nose bleed sent him off to the Intensive Care Unit. I'll spare you the gory details, but he needed to have another line put in for an immediate platelet and red blood transfusion. His vitals were very low and he was hours behind on his medications. The PICU staff reacted quickly to stabilize and monitor his health before sending him back to the medical floor. Back on 7 medical, he has been spiking fevers (still) and he seemed to be in quite a bit of pain once again. The docs then put him back on a higher dose of Morphine (which makes him spacey, agitated and angry...ugh). The docs are working hard to create a new plan for pain control. They started him on a new drug last night. So far he seems comfortable. He received two blood products today and seemed much more perky tonight. He was sitting up on the parent bed hip to hip with Stephen playing on the computer. He was smiling and being silly (something we haven't seen in a while). He said that he is looking forward coloring with Michael in the morning. By the way... the boys are staying with me at the Neely House tonight.
The docs are not clear as to why Joseph is still getting fevers. They take blood cultures every 24 hours and there have been no signs of bacteria or infection. The fevers could be Josephs body responding to disease. We are just not sure. As long as Joseph has fevers and pain he will be inpatient. He does not mind at all. He is well loved by his nurses. They are so good to him and play a huge role in his good attitude. He has not had an appetite at all and will continue on IV nutrition (TPN) to maintain his weight. Another CT Scan is scheduled for Monday to take a peek around.
Many of you ask... "How are YOU doing?" Well...we are concerned with Joseph being at a critical stage of this disease. When he is sad and hurting, we are sad and hurting too. It is as difficult as you would imagine. We remain worrried, but positive and strive to keep all our boys busy and happy. We dig deep to stay creative and make Joseph's hospital stay as fun as possible. Michael and Stephen have been remarkably supportive. They have managed to stay on track at school (A's n B's on the last two report cards) and keep a good social life with their friends. They come into the hospital for visits and most of the time spend weekends at the Neely House with me. I'm sure they'd rather be elsewhere at times, but family time is important to all of us. I'm proud of them and I love their company.
And friends... I do appreciate all of your supportive phone calls and emails. You may not hear back from me right away or at all and I know you understand. Some days, a cup of coffee and a shower doesn't happen until after noon time. Please know that I do receive your messages and emails and I know that you sincerely want to help. I hope that this web site has useful information to keep you up to date.
Thanks again for your support and for checking in on us.
Tuesday, March 1, 2005 8:34 PM CST
At this moment, Joseph is not feeling well. He is still spiking fevers, having pain and his vitals are not consistent. The bone marrow aspiration showed a significant amount of neuroblastoma. The doc’s now believe that his symptoms are due to his disease. Joseph has had several tests to check the extent of the disease and health of his body to plan his next course of treatment. An MRI is scheduled for tonight and the plan for chemo could start as soon as tomorrow. He will be inpatient for a while. We are praying that this chemo will bring comfort and healing to Joseph.
Saturday, February 26, 2005 8:47 PM CST
Since my last update Joseph has had a tough time with pain and fevers. Last Sunday, we went to the ER to check his blood counts and have x-rays of his hips. On Monday, Joseph got a bad nose bleed. We headed to the ER again to get some platelets into him. The car ride to Boston was a little scary. When we arrived, his blood pressure was low, temp. was low and he was going into a little bit of shock. It was then discovered that he was dealing with a blood infection. Joseph was admitted to the PICU for a couple of days and then brought up to the medical floor once his vitals were stable. He was doing much better, but was still dealing with a fever, pain in his legs and unstable blood counts. The doc's decided to do an MIBG to rule out disease. Josephs fever continued to go up and legs hurt to bare any pressure. To our surprise, the MIBG showed good results. Some of his neuroblastoma has disappeared. We are happy with these results, but puzzled with the new findings. The MIBG needs to be further reviewed by additional doctors before we have final results. There were some strange markings that may suggest bone marrow reproduction. This could mean that his stem cells ARE the cause of all this pain. There is always a catch though... The MIBG may not detect the flow of neuroblastoma cells in his marrow. A bone marrow biopsy will need to be done. They may perform this on Monday. On Friday, he had another bad nose bleed along with low oxygen level, etc.. However, the blood infection might be under control now since his fever is down. He has started back on TPN for some nutrition and Morphine for pain. He is not very happy on this stuff.
To sum things up... I think he is on the road to recovery once we get his pain under control. I think it would help if we knew the source. On Monday, we should have a better idea of where we are going with our next protocol from further disease evaluation. Vin and I have been very busy with Josephs needs, but we will try to keep you posted when possible.
Ya, it's a bummer of a school vacation, but the boys have done their best to have fun. They are champs! We have been at the Neely House on and off with them. Joseph is so happy to have them close by (and so am I). Joseph was not in the best of moods today, and it is so hard to watch, but the nurses and a couple of special people brightened our day with surprise birthday gifts, cake, cup cakes for Joseph to decorate, and roses for me. It made all of us smile. Thanks nurses... we love you!
Friday, February 18, 2005 9:18 PM CST
Since my last journal entry, we stayed close to home continuing with nebulizer treatments and steroids. Joseph seems to have recovered from his respiratory illness. He is now dealing with pain that seems to be moving to different parts of his bones. He complained of pain in his arms, then his legs. The doctor thinks that it may be his stem cells producing cells. He is on pain medication and will be monitored closely. On Monday, Joseph’s platelet count was a low 14 and he needed a transfusion. His marrow is now producing cells, but platelets usually do lag behind so, we are not terribly surprised... just disappointed. A low platelet count will hold him back from starting a new protocol.
On Wednesday, Joseph was admitted AGAIN with a fever. His pain in his leg was much worse Tuesday night so, I was relieved about this admission to get some pain control. After a little TLC from his nurses he began to feel better. He received a red blood transfusion last night and counts looked better today. He was quickly discharged this morning to make it just in time for an appointment at Dana Farber for a discussion about our next possible protocol. It may be a while before his platelets recover so, his disease needs to be stable in the meantime. We are also waiting for Joseph’s lymphocytes (a particular group of white cells) so that we can send them to Texas to finish up the development of his vaccine.
Please keep Joseph in your prayers that the pain in his leg will feel better and for his counts to soon go up.
Thursday, February 3, 2005 7:57 PM CST
Joseph came home from the hospital on Tuesday. Echocardiagram and EKG showed normal heart function. His heart rate is much better, but he is still dealing with the cough. He went home on antibiotics, steroids and will have nebulizer treatments a few times a day until his lungs clear up. Overall, I think he is on his way to recovery.
Today, Joseph had a follow-up at clinic. His counts are climbing! His precious stem cells are working hard producing cells. The doctor thinks that after a few more days of antibiotics he should be much better.
Monday, January 31, 2005 7:45 PM CST
Joseph was admitted again on Saturday with a fever. Over the past week he has had a strange little cough and a very high heart rate. On Saturday (1/29) he spiked a fever and we were admitted. He has felt pretty good, but the cough still lingers. After a couple different antibiotics, nebulizer treatments, and steroids, I think he is feeling better. His oxygen levels are much better and his heart rate is almost back to normal. Chest x-ray was normal and EKG was normal. Tomorrow he will see a Cardiologist (maybe an echocardiagram) to make sure his heart is functioning OK. Then he'll probably get a blood transfusion. Maybe we'll even go home soon.
Tuesday, January 25, 2005 8:09 PM CST
Joseph was finally discharged from the hospital on Saturday, January 22nd, after almost 3 weeks. This was day +8 after receiving his stem cells. His ANC (a formula for computing white blood counts) had finally reached a point where a pattern was showing an upward trend. It was nice to get home just before the blizzard and hang out as a family. Joseph's appetite has improved over the past couple weeks and he has gained a few pounds rather quickly. The recent CT Scan and MIBG scan show some decrease in the amount of disease. This is very good news, and although happy at the moment, we have learned to accept this type of information as one small step forward.
What's next? Over the next few weeks we will discuss our next course of action with our doctors here in Boston, and others from Children's Hospital of Philadelphia and Texas Children's Hospital. Decisions will be based on Joseph's blood counts and whether he meets the criteria for some of the protocols available.
Thank you for checking on Joseph's progress via this web site and for all your kind words and prayers. We read each and every guestbook entry to Joseph. They put a smile on his face and ours.
Tuesday, January 18, 2005 9:16 PM CST
I am happy to report that it is 10:30 pm (at the hospital) and Joseph has just fallen asleep. What this means is, he has had lots of fun and energy today and I finally had to force him to go to sleep. But first, he requested for a hot chocolate and a snack. Yes, his appetite has improved. He never did get the NG tube. Instead, the doctor ordered TPN (fat and nutrition) through his port line.
His precious, lifesaving, Stem Cells were infused on Friday, January 14th. All went very well. Now we wait...and wait for his marrow to recover and begin producing cells. His counts are still low and he is still recieving blood transfusions frequently. It could take about a week before we see a pattern of growing white cells. He is in a special hepa filtered room on precautions until his white count is high enough to protect him.
The CT Scan did not show anything obvious that would be causing belly pain. His belly pain seems to be much better since they switched his antibiotics. The scan report also stated that lymph nodes have gotten smaller. We don't know much more than that until we compare it with the upcoming MIBG scan.
What's next? When he has a safe level of white cells, we can go home (could be another week or two...we have no idea). The MIBG is scheduled for Thursday (1/20). This is the body scan, specific for detecting Neuroblastoma. It is often frightening to sit there and watch what the cameras reveal. We are praying for much less disease since he has been through two intense radiation treatments. Depending on the results of the scans and tests, we will be talking with Dr. Maris of Childrens Hospital of Philadelphia and Josephs Oncologists here in Boston about starting Joseph on another experimental chemo in Philly. We should be hearing from Texas soon too. All three teams have been unbelievable coordinating Josephs studies. We are grateful to all.
And just a quick note... Michael is feeling better. It was too bad that he was sick during my time home, but in a way, I got to be home with HIM and nurse HIM back to good health. He went to his room in the early evening and Stephen and I sat and watched old "Sienfeld" episodes. I was frustrated that we couldn't leave the house to go do all the fun stuff that I had planned, but in the end I thanked God! I had some nice mom and son alone time.
Thursday, January 13, 2005 9:11 PM CST
Tomorrow afternoon, Joseph will receive his precious stem cells. His stem cells will help his suppressed marrow recover and he will, once again, begin producing blood cells. He has been in the hospital since 1/3/05 on antibiotics and continuos fluids with very low blood counts. He has not had much to eat at all. There has been discussion of giving him some calories and nutrition through an NG tube. I’d rather not see this happen, but he is very thin and we will do what it takes to get him healthy. Yesterday, he had a CT scan so we can get a better look at his belly to see what is causing his belly pain and lack of appetite. We don’t have results yet, as of tonight.
I think Joseph is in good spirits overall. He had a blast the other day when his two preschool teachers paid him a visit. They brought in lots of fun school activities for him to do. One of his favorites was breaking open a fossil to find surprises inside. Before they left, he threw on a mask and gave them a quick tour, introducing his nurses and doctors along the way. Thank you sooooo much Mrs. Clark and Mrs. Coffey for brightening his day. Another highlight for Joseph was when a “Home Depot” volunteer came in his room and built a little wooden truck with him that holds crayons. He had a great time... while I sat there and watched my son, with low platelets, bang a hammer and nails. All went well and there where no bruises (ha ha). Thank you “Home Depot.” What a great idea to bring the kids workshop to the hospital.
I was torn, once again, leaving the hospital tonight. I know Joseph is in good hands and has a good time with his dad...but, it is still hard for me to leave my little pal. I miss my big guys at home too. They are so good to me and so understanding. I need to spend some time with them and try to catch up on some sleep. Poor Michael is fighting the flu that Stephen and Vin had last week. Hopefully, he’ll be back to good health soon.
What’s next? Stems Cells tomorrow and hopefully results from the CT scan. We are looking forward to continuing treatment between CHOP and The Floating Hospital for some experimental chemo. Also, Texas is still in progress of developing his vaccine.
Our family needs prayer for strength to continue our journey with cancer. Thank you for having us in your thoughts and prayers. Your guest book entries are incredibly kind.
Saturday, January 8, 2005 10:25 PM CST
Joseph is about 4 weeks out from the MIBG treatment and his body is beginning to feel the effects. He has been in the hospital since Monday (1/3) with very low counts. He started off with a fever and began IV antibiotics immediately. Unfortunately, the antibiotics upset his stomache and he doesn’t feel like eating. He’s only 32 lbs...he needs to fatten up. We can bring him home when his ANC is high enough to go off antibiotics. Hopefully, this will be soon since he has recieved several blood transfusions and the docs have increased his GCSF.
I’ll be honest...I am feeling a little drained from all the worrying and trying to protect Joseph from getting hurt or sick. He is having fun with life itself, but he is getting older and realizing that he is missing out on school and playtime with kids. Every chance we get we send him to school or do something fun, but there is usually only a small window of oportunity. My creativity bank is running low. He loves when people come to visit, but please be sure that you are well.
What’s next? Once we get him home we will get his counts checked more frequently. He may be getting to the point that we may need to use his stem cells to help his marrow recover. In a couple of weeks he will have his scans.
Just for fun...We had a “Twelve Days of Christmas” bucket of fun at the end of our driveway when we returned from Philadelphia. A Secret Santa left a surprise every day for 12 days. Each one had something to do with the song like; “calling birds” was a beanie bird with a calling card attached to it and “turtle doves” was chocolate turtles and Dove candies. The boys had so much fun looking forward to the next day and trying to guess what would be in the bucket next. We made a great big “Thank You” sign for the bucket to thank whomever did this, but we have had mounds of snow and are unable to place it anywhere. So... “THANK YOU”... who ever you are.
Tuesday, December 28, 2004 12:44 AM CST
We made it home from Philadelphia on Saturday (Dec 18th). On Monday we got blood counts checked (counts were already beginning to drop). In the middle of the night on Tuesday, Joseph spiked a fever and was admitted for a few days. He was discharged on Friday afternoon (Christmas Eve). We were grateful that he was able to wake up in his own bed on Christmas and spend the day with family. He had a great day. On Christmas night he had a nose bleed that would not quit. On Friday, his platelet count was only 16 (normal is 150 to 400) and he was transfused with washed platelets. After bleeding for 2 hours and 15 minutes we assumed that he needed platelets. To our surprise, his count was 67. No platelets needed. The bleeding finally stopped and we went home with meds in case it happened again. Sunday was uneventful and Monday was a scheduled visit at clinic for blood checks. His counts are low, but he is getting his shots and will be transfused Wednesday or Thursday.
During Joseph’s admission, we learned of Sophia (4 yrs. old), who fought a 2 ½ year battle with neuroblastoma, has suddenly passed away. Sophia, was not only a cutie, but she was so resilient and full of energy. In clinic, families become very close, sharing ideas, comfort, and give each other encouragement and strength. We are deeply saddened by her loss and she will be missed. If you’d like to send her mom (Diane) and sister (Olivia) an encouraging message, you can find them at Caringbridge.org/ma/sophiamarie.
What’s next: We are trying to keep Joseph away from the nasty flu’s and viruses this time of year, so we try to stay close to home. We are constantly on the lookout for anemia, and low platelets and we need to get his counts checked frequently. Joseph does a really good job at hiding the fact that he may be anemic. He is always full of energy. He lost a few pounds, so we are working on beefing him up. Toward the end of January, we will brave another scan to determine results of the MIBG treatment. Texas is still requesting several tubes of blood so, we wait for that vaccine to be developed.
Happy New Year!
Holly
Friday, December 17, 2004 9:17 PM CST
We arrived in Philadelphia on Sunday night (Dec. 12th) at our little house near the Art Museum. The boys immediately found comfort with the computer and DVD player. We settled in and prepared for our stay in the city once again. We checked into clinic on Monday, where Joseph was examined and accessed and then we were admitted to the “plastic room.” Again, Joseph would be surrounded by lead walls and everything we touched was covered in plastic. He didn’t seem to mind playing Gameboy through a plastic bag. Tuesday morning we were off to the OR for catheter placement and the infusion began in the afternoon. He had a little nausea and minor jaw pain, but remained in a good mood, playful, and as active as a five year old could be in a hospital bed. He loved to make paper chains to hang across the lead walls. Vin and I alternated nights at the hospital. It was so nice to be able to go back to a house this time. The boys kept busy with school work and enjoyed getting out for a Philly Cheese Steak. They’ve been good sports about this whole thing. I think they were entertained with watching me try to find my way around the city and trying to park our van. Our street is so narrow that we need to fold in the mirrors and squeeze into parking spots big enough for a volkswagon.
The week went by and Joseph was discharged today (Friday). We decided to skip sitting in traffic through NY and Conn., so we’ll head home tomorrow.
What’s next: Joseph already has low counts, so I expect he will get blood in Boston on Monday. From there he will be closely monitored in clinic and will probably receive several blood transfusions. The doc’s expect that he will need to use his stem cells to help his marrow recover from the double MIBG treatment. Like before, in six weeks, Joseph will have scans for a full disease evaluation. We hope he will recover quickly for when we get the call from Texas that his vaccine is ready. And then we are off to Texas...
We wish you a happy holiday season and thanks for checking in.
Holly
Saturday, December 4, 2004 10:07 PM CST
I realize it has been a while since my last update. Has a month really gone by??? Well, first I hope you all enjoyed your Thanksgiving. We were very Thankful this year to have the opportunity to be home with family. We had relatives stay with us for the week and we all had a great visit. Thanksgiving dinner couldn’t have been better. The boys were surrounded by almost all of their cousins that they don’t get to see often. Grant, from Texas, went to school with Joseph on Monday (see photo).
During Thanksgiving week, we squeezed in a couple of scans and blood checks. Joseph’s blood counts have been unpredictable. He is still in need of transfusions (due to the effects of MIBG treatment 8 weeks ago). This is expected and he is otherwise feeling pretty good. We were disappointed with the results from the scans. Because Joseph has been feeling so much better, we had higher expectations of scan results. The Radiologist (in Boston) suggests that there has been no change in disease since the last scan (before treatment). There may be some change, but nothing significant enough to report. I find this hard to believe since we have seen a visible difference in tumor and he is much more mobile. He has not complained of any pain either. The Oncologist’s (Boston and Philly) believe that this treatment has had some benefit and they think that he may benefit from another MIBG treatment. So, we are scheduled to go back to CHOP on December 12th. We are happy to have him treated again, since we too believe that he has responded to MIBG. We are disappointed to be leaving home before Christmas, but we will treat it like a mini vacation. Joseph has already begun pretesting for the next treatment. We had a long day in Boston on Thursday beginning with an early morning platelet transfusion then off to the O.R. for Bone Marrow biopsy and aspiration. Then, a red blood transfusion was waiting for him after the recovery room. All juiced up for the weekend
On Friday night we attended “On Course for Kids” (Dog Agility fund raiser for the Floating Hospital). The boys were each assigned to a team of 2 dogs (see home page photos). They got to feel like they owned a dog for a night and made friends with the trainers. The trainers were kind enough to donate their time and collect donations for this event to be made possible. It was obvious that a lot of work goes into this event and all for the kids. The boys took home ribbons, trophies and prizes for all the hard work their dogs did for them. When Joseph woke up this morning, the first thing he asked for was the buttons with his dogs pictures on them. He was so proud to take home a ribbon. We all look forward to next years event.
I have been reminded that God has a purpose for the lives of those that have been affected by cancer. I have to say, I HAVE met some really great people during our journey and have also met some real courageous kids. Please keep these kids in prayer while they endure treatment this holiday season: MICHAEL (3 years old)- whom we roomed with over 2 years ago, has just recently relapsed, SOPHIE as she begins radiation, GRYFIN whom has begun transplant, PAIGE, who needs a break. She has a match for transplant, but problems keep arising leaving them with uncertain treatment plans.
As always, thank you for checking in on us and have a very happy holiday season!
Holly
Friday, October 29, 2004 4:23 PM CDT
When we returned home from Philly, we were worried and nervous about the fast progression of Joseph’s neuroblastoma. We did not know what to expect, since every child reacts differently to cancer treatments. Would he be sick, in pain, weak? Would this treatment work during the aggressive progression of disease? Since our return, he has been very tired, but has hardly complained of any pain (an occasional belly ache now and then). We’d like to see him eat more and gain a few pounds, but I think he’s doing OK under the circumstances. He managed to squeeze in a couple of days of school before his white count started to drop. Yesterday, he joined the morning Pre-K class for a quick Halloween Parade (outside) before his appointment in Boston.
The Oncologist, said that he thought Joseph was responding to this treatment because his diseased lymph nodes seemed smaller. MIBG keep doing your thing!!! And friends and family, keep on praying. God hears you!
The blood counts are beginning to drop, as they are expected to do so. He has an ANC count of 660 which means his white count is low. Since the white cells are what protects him from infection and germs, we need to keep him away from crowds. No school for a while (boo hoo...he’s sad about that). He has begun his daily Neupogen shots to help bring his white count up. His platelets are at 41 (normal is 200 to 400), but no transfusion needed until he gets down to about 25 or 30. His red count is actually doing well. HCT is at 30 (normal 32 to 38) and his HGB is 10 (normal is 10 to 13).
Joseph is excited about dressing up for Halloween. I think his final decision of costume will be “Spiderman”. He went from being a Policeman to Puppy to Spiderman. As for Michael and Stephen.... they may throw on a black cape or paint a little blood on their face or something. They are just interested in stocking up on candy.
What’s next: Joseph will get blood counts checked a couple times a week. When needed, he will get transfusions in Boston. He will continue to see the doctor once a week for disease evaluation. We're trying to stay away from illness (ha ha....this time of year?) The scans are scheduled for November 23rd and 24th...the day before Thanksgiving. Ugh!
Saturday, October 16, 2004 2:20 PM CDT
The week started off a little frightening. Over the weekend, Joseph’s pain seemed to have gotten worse. He wanted to be carried around, his chest hurt to laugh or cough and we began to see tumor bulging in his chest. We were so happy to begin this treatment!
We drove to Philly and arrived at our hotel on Sunday night. Monday morning, Joseph developed a slight fever and needed a blood transfusion. Not a problem....he got juiced up and then admitted. Our boys were able to hang out in the room since no medicine had been administered yet. The entire room was covered in plastic. The floor, walls, pillows, the phone, everything...plastic. We began our training of do’s and don’ts while our child is radioactive. Vin and I needed to wear gown, gloves and booties at all times while in his room. The lead walls did not completely cover his entire bed, so we were able to reach around to give him food and medicine. The nurses only came into the room if absolutely necessary. When the nurses did enter the room, they would get shot with Joseph’s “shoot the cans” gun. Hey...he needed some kind of entertainment. He’s not used to NOT having Child Life people or nurses to come in and play with him. We were IT for entertainment.
The catheter was placed on Tuesday at 6:30 a.m. in the O. R.. The Nuclear Medicine was delivered and administered in the afternoon. The infusion itself was uneventful. It came in a shielded box with an IV syringe pump that went through his port. As soon as the medicine started flowing, everyone quickly evacuated the room and I had to get behind the lead wall. The numbers on my meter immediately started climbing. We were upset at first about the separation, but got used to it as time went on. He was feeling good during and after the infusion. He complained a little bit about pain in his back, chest and his belly. Tylenol seemed to keep him comfortable. He was on nausea medicine because he didn’t want to eat, but overall, I think it went well.
Michael and Stephen had a nice little area down the hall from Joseph’s room to set up their school work. They set up their lap top and spread out their notebooks. They chipped away at homework and in between took breaks in the playroom or watched a movie. They deserve a “patients” award for being so patient with all that we needed to do with Joseph. On Wednesday, Vin took a break from the hospital and took the boys to the Ben Franklin Museum. On Thursday, I took the boys to see Liberty Square. Maybe they’ll get extra credit in History Class (ha ha). We would have liked to have spent more time seeing Philadelphia, but our sole reason for being there was for treatment not vacation.
Joseph’s radiation levels were OK yesterday (Friday) to be discharged from the hospital. So, we drove home last night. Today, Josephs level of pain seems less. He's riding his bike, jumping off the couch (pretending to be Spider Man) and running around in the yard. Amazing! Thank you God for minimizing his pain.
For the next several weeks, Joseph’s blood counts will drop to a dangerous low. He will be closely monitored at least twice a week for disease evaluation and blood levels. In six weeks he will have a scan to see how the MIBG treatment is working. It seems like such a long time to wait. I’ll keep you posted when there is new news to report.
Holly
Friday, October 8, 2004 3:25 PM CDT
Home page picture - Officer Swift, in Chelmsford, surprised Joseph with a uniform and a visit with his police cruiser yesterday. Joseph has been wearing the uniform ever since. You may remember me mentioning Madison Swift in past journals. She is also a Neuroblastoma patient (and buddies with Joseph) at the Floating Hospital. Officer Swift is her dad. Thanks Sean!
We received a call from CHOP on Thursday with the good news that we WILL be able to go for the MIBG treatment next week (October 10th). We are busy with some last minute travel arrangements and packing, but are very excited to get this treatment done! We are driving (ugh) but this will be the best way to get there since we are not sure where we are staying once we arrive. We have tentative arrangements at The Ronald McDonald House and tentative arrangements with a nearby hotel. The boys have a great team of teachers that will be putting some school work together for them to do while at the hospital. They are disappointed to miss school, but are excited to visit another big city. They will be checking their email to stay in touch with school, so if you’d like to send them a message here are their addresses: Michael = mmessina1992@yahoo.com and Stephen = smessina12@yahoo.com.
In three years, I do believe that this has been the most disturbing to us. We have used all the big guns to kill this disease and yet it still continues to grow. Neuroblastoma research still has a long way to go. This type of cancer has no known cure yet and Neuroblastoma kids are dealing with relapse with additional treatment plans to prolong life while waiting for a cure. We can only pray that with the help of kids like Alex Scott, who fought to raise money to find a cure, that someday there WILL be a cure. Alex is missed every day, but her lemonade stand, to raise money for pediatric cancer research is still going strong..... www.alexslemonade.com.
Joseph is doing pretty well. He complains of neck pain every now and then, but keeps on going. Nothing is going to stop this kid from having a good time. I am gradually giving him information regarding his new treatment. He knows that he still has “Mr. Cancer Cells” and the new hospital has medicine that will fight to get rid of them. I have told him that this special medicine is only for “him” and mommy and daddy can’t touch it or even go near it. We also don’t want to bring any favorite toys or attachments because the medicine might get on them and “wreck them”. So, we are making him a blanket just for this treatment that has the same texture as his own (thanks Pixie). I have also made pillow cases with iron-on pictures of our family so he can sleep with us. He seems to be having fun with all the preparations. Wait till he sees the “shoot the cans” game I got him.
Please pray that we all have the strength to endure what we are about to come upon. When Joseph completes the MIBG treatments his blood counts will become dangerously low. He may need to use his “stored” stem cells. We’d like to keep them in the freezer if needed for the future. With low counts he will not be able to undergo any other treatments. We need prayer that his disease will become better or stable during this time. We will visit with the Texas Children’s Hospital next. His blood will be collected next week and a vaccine will be developed during the next few months. This may help Joseph’s immune system kill cancer cells.
Friday, October 1, 2004 3:54 PM CDT
Note: Dates to CHOP have been changed to October 22nd.
It was a long two hours while we stared at the MIBG screen watching several spots on Joseph’s body light up with findings of Neuroblastoma. We were hoping that what we saw was wrong. Later, the doctors confirmed that he DOES have progression of disease and we need to act on it. Joseph appears to be fine on the outside. It is hard for us to believe that he is carrying so much disease. His doctor believes that it will now be beneficial for Joseph to have the MIBG Treatment in Philadelphia. I spoke with Children’s Hospital of Philadelphia (CHOP) and made an appointment for the “MIBG Treatment” beginning on October 26th. He will begin pre-testing for the MIBG Protocol here in Boston. After a series of tests next week we will then head to CHOP (October 22nd ). They will begin hydration and other admission stuff on Monday October 25th and on the 26th they will administer the Isotope. The procedure will take about 2 hours leaving Joseph “radioactive” for 3 to 5 days. We will have to stay in a lead room with him 24 X 7 (not that I would ever think of leaving the room anyway), but we will not be able to hold him until radiation levels are safe (this is going to kill me). His bed will be behind lead shields.
All of this is hard for us to endure. It is hard for us to see Joseph go through all these treatments, of course, but he is so well loved by all who care for him at the Floating Hospital. He never complains about clinic visits, getting stuck with needles, boring tests or yucky medicine(like the 16 ounces of contrast he had to drink on Tuesday). Joseph has a magnetism that I can not describe. He is a happy, silly kid and living a good life, for what he knows as life. We pray that this will be the last of his treatments. This being the cure!
It has been almost three years since diagnosis and it is getting harder and harder for us to do the normal things in life. It is with great effort that Vin gets up and goes to work every day. I dig deep for the energy to help Michael and Stephen with their needs, do laundry, clean house and return phone calls. I know it will take time and I know that, with the grace of God, our family WILL survive another attack of the neuroblastoma war. Michael and Stephen will be traveling with us to CHOP. They were given the choice and would not have it any other way. I am very happy to have them with us. I don’t think I would want it any other way either.
Time is something I don’t have much of these days, but you, my friends, are thought of daily. I do appreciate all you do for us. I could not function without you. Thanks again for keeping up with this site.
Here is the link to the protocol that we will follow: http://www.nant.org/nant2000-01.shtml
Holly
Thursday, September 30, 2004 1:48 PM CDT
It was a long two hours yesterday, while we stared at the MIBG screen watching several spots on Joseph’s body light up with findings of Neuroblastoma. We were hoping that what we saw was wrong. Later, the doctors confirmed that he DOES have progression of disease and we need to act on it. Joseph appears to be fine on the outside. It is hard for us to believe that he is carrying so much disease. His doctor believes that it will now be beneficial for Joseph to have the MIBG Treatment in Philadelphia. I spoke with Children’s Hospital of Philadelphia (CHOP) today and made an appointment for the “MIBG Treatment” beginning on October 12th. He will begin pre-testing for the MIBG Protocol here in Boston tomorrow morning. After a series of test tomorrow and next week we will then head to CHOP (October 8th). They will begin hydration and other admission stuff on Monday October 11th and on the 12th they will administer the Isotope. The procedure will take about 2 hours leaving Joseph “radioactive” for 3 to 5 days. We will have to stay in a lead room with him 24 X 7 (not that I would ever think of leaving the room anyway), but we will not be able to hold him until radiation levels are safe (this is going to kill me). His bed will be behind lead shields.
All of this is hard for us to endure. It is hard for us to see Joseph go through all these treatments, of course, but he is so well loved by all who care for him at the Floating Hospital. He never complains about clinic visits, getting stuck with needles, boring tests or yucky medicine(like the 16 ounces of contrast he had to drink on Tuesday). Joseph has a magnetism that I can not describe. He is a happy, silly kid and living a good life, for what he knows as life. We pray that this will be the last of his treatments. This being the cure!
It has been almost three years since diagnosis and it is getting harder and harder for us to do the normal things in life. It is with great effort that Vin gets up and goes to work every day. I dig deep for the energy to help Michael and Stephen with their needs, do laundry, clean house and return phone calls. I know it will take time and I know that, with the grace of God, our family WILL survive another attack of the neuroblastoma war. Michael and Stephen will be traveling with us to CHOP. They were given the choice and would not have it any other way. I am very happy to have them with us. I don’t think I would want it any other way either.
Time is something I don’t have much of these days, but you, my friends, are thought of daily. I do appreciate all you do for us. I could not function without you. Thanks again for keeping up with this site.
Here is the link to the protocol that we will follow: http://www.nant.org/nant2000-01.shtml
Holly
Saturday, September 18, 2004 3:39 PM CDT
Joseph did really well after the Cystoscopy. He woke up in the recovery room, ripped off the oxygen mask, and said, “Is this where they have the popsicle’s?” We gave him Tylenol for pain and were sent home later that day. I was instructed to bring him home and keep him quiet and rest. Well, easy for them to say......I turn my head for a second and he’s outside kicking a soccer ball around. Anyway, the doctor saw some wounds in his bladder that were probably caused from a chemo drug that he had a while ago. The bleeding has stopped and nothing further was needed to be done. However, he did start another round of chemo on Monday and symptoms could re-appear. So, we are continuing with 14 hours of IV fluids every night and keeping a close eye on him. The next step.....He has five more days of chemo (Mon. thru Fri.) and then he has an MIBG (body scan) scheduled for the end of the month. We are praying for reduced disease!
School is going really well for Joseph. One of his old buddies (Justin) from last year is in his class, which helped with the transition. He adores his teachers and wants to go to school everyday.
Hold on....Joseph would like to type a few words.... fortt4t6uuw744u55oldr,hfuitgrjrtyret7riy6[[[]]]]\\\\\\ye937gr 34wt4t6e6r656rr24654e3t5e36ee375ee e675t6r re5 3 43r63r363e63errqncvxncbn
Stephen and Michael have adjusted really well to Middle School. They both have some really great teachers and are enthusiastic about getting further into the year. They walk in the door (a nice early 2:15pm), grab a snack, and get their homework done. Joseph is in afternoon Pre-K so, I get to spend an hour with the big boys before I pick him up at 3:15pm.
I will update you after his next scan. It is hard for me to find the time to get on the computer these days, but I will try to keep you up-to-date, at least monthly. Thanks so much for checking in on this site. We all appreciate your support!!!
Holly
Friday, September 3, 2004 10:22 PM CDT
Joseph has been having chronic issues with belly pain and blood in his urine for the past few weeks. We have been traveling to Boston frequently to check on these issues and we are still not sure of the cause (nothing serious however). On Tuesday, he had a blood transfusion and today we met with a Urologist. He has scheduled Joseph for a cystoscopy on Tuesday at 8:00 am. We plan to stay at the Neely House since we need to be in the O.R. at 6:00 am for pre-op stuff. The doctor believes that there may be some irritation in his bladder due to some chemo that he had a while ago. His next round of chemo will be delayed until the following week or until he is completely healed. Joseph will continue his 14 hours of IV fluids every night, which has been tiring for me and Vin with the frequent urinating ALL night. He has been accessed (central line) for a few weeks now and has had to play with caution and can't go swimming, but he has done a remarkable job having fun with what he CAN do.
I'm hoping things calm down after the cystoscopy so Joseph can attend his first day of Pre-K on Thursday. He is a little nervous, but I think he’ll be fine once he meets some new buddies.
Michael and Stephen started Middle School on Tuesday. It seems so early. Ya...early as in 6:45 to catch the bus. I am NOT an early morning riser. It doesn’t seem to bother the boys though. It has only been 3 days, but they seem to be enjoying the new year. This is the year they change classes, take a language and break the bank with all the supplies they need. My little twins are not so little any more.
I gutta get going now, but check back again soon. Joseph loves your messages in the guest book. Thanks!
Holly
Tuesday, August 17, 2004 10:42 PM CDT
I know it has been a while since the last update. I won’t bore you with my excuses. I’ll just get right to the point.
July 22 - Kathryn and I left for Chicago to attend the Neuroblastoma Conference. It was very informative and I did learn of research in progress, new studies, and the history of neuroblastoma and how far we have come. It did not sway my decision of treatment for Joseph. I still believe that we are doing the right thing, for the moment. However, I now know what is out there if needed in the future. And by the way, we had a great time in the city. Chicago is beautiful!
July 26 - The boys attended a week of Vacation Bible School at our church. It was a miracle that Joseph was able to attend 4 of the 5 days. He had such a great time. I spent the week getting pampered in the “Mom’s Cottage” at VBS. I really needed a spiritual boost and it was nice to see some old friends that I have not seen in a while.
July 31 - We started off for our trip to Hershey Park. We had such a good time. Stephen and Michael ran from coaster to coaster until the park closed. Once Joseph warmed up to the rides he had a great time. He liked driving the old fashioned cars and riding the train over and over again. And yes, we got a Hershey Bar at the end of the Chocolate tour. It was 90 degrees or more the entire time we were there so, I didn’t get to purchase the 5lb chocolate bar. It would have turned into 5lbs of melted chocolate all over my car. On our way home, we stopped in New York City to visit with some old friends that we met at Sloan Kettering. I can’t believe it’s been six months since Joseph was treated there. He was so happy to see the hospital again “for the fun of it”. He could not walk to the hospital without stopping in to see his photographer friend, Derek. Thanks for the train! We ate at Joseph’s favorite restaurant too, “The Silver Spoon.”
When we returned from our trip, we were sad to have learned of Alex Scott’s passing. I do not believe that she “lost her battle” with neuroblastoma. I do believe that it took her life, but she had courage and determination to keep going to the best of her ability. Alex and her family have been inspirational to many of us. The Scott family will continue with her lemonade stand dream...to raise money to rid kids of cancer (pediatric cancer research). Alex will be missed.
ALEXSLEMONADE.COM
The day after our return from Hershey, we attended a family get-together at my sister, Heidi’s house. Joseph didn’t seem to be himself all day and complained of belly pain. The next day (Sunday, August 8th) he was admitted to the Floating Hospital. His pain seemed worse and he developed a fever. The fever persisted for most of the week, but all tests came back negative for infection. By Thursday he was feeling better, but suddenly there was blood in his urine. He had more test and nothing was found. Let me share the unofficial MIBG results.... The disease that was in his thigh is completely gone.... disease in elbow and sternum may have reduced in size...disease in head, abdomen and belly is unchanged. Overall, this is good. The fact that disease has disappeared from his thigh means that he may be responding to current chemo treatment. We are happy, but not celebrating. Anyway, Joseph started his next round of chemo on Thursday and got out of the hospital just in time to celebrate his 5th birthday (Sunday, August 15th). He got a new bike that looks like a motorcycle (it’s what he’s been asking for) and a Care Bear Cake. He was feeling great all day and had a great day. He had more blood in his urine that night so I brought him back in to Boston on Monday. Again, nothing found. He has been on IV fluids at home to protect his precious kidney and it’s going well. He doesn’t mind at all. He likes to be in charge of his back pack and line. It’s like a puppy to him. He’s very protective. Next step is to finish chemo (5 more days) and a CT scan has been scheduled for Thursday.
I'll keep you posted. Soon....I hope.
Holly
Wednesday, July 14, 2004 9:01 PM CDT
A vacation at last! Cape Cod was beautiful last week. Everyone was well, weather was perfect, kids love the beach and we were surrounded by family. Can’t ask for anything better than that. Joseph was non-stop action and keeping up with the big kids. He dug up a quahog or two, rode the boogie board, hiked on Morris Island (Chatham) and made a bird house (3 times). He was never without the hand of an aunt, uncle or cousin . The saddest day for him (and the rest of us) was coming home.
Now, back to reality....... We went in for Chemo on Monday and to our surprise, his white count was too low. So, we go back in tomorrow to, hopefully, start day 1 of a 10 day course of Chemo, plus 21 days on antibiotics. This mix is slightly different from what he has had before. He did well with Irinotecan and Temozolamide before so I suspect he’ll do well this time. He is running around and feeling so well that we have decided to put our Philadelphia plans on hold for now. He will continue treatment in Boston and after his scans we will know better where we are at.
I am venturing out to the Neuroblastoma conference in Chicago next week with my niece. [Thank you Kathryn for always being by my side]. I expect to pick up the latest on Neuroblastoma research and meet a network of parents dealing with this awful disease.
Monday, June 21, 2004 9:43 PM CDT
The Boston Harbor Walk was a huge success. It was perfect weather to walk along side the beach and out into the harbor. Joseph walked, ran, rode on Vins shoulders and got an occasional stroller ride. Michael and Stephen were happy to run ahead with their friends. Our team consisted of 42 walkers and an additional 19 from our Church that walked a 6-mile trail on their own. Thank you Immanuel Church. We are $3,000.00 past our goal (to date). Thank you “Team Messina!” The checks are still being entered and our numbers are still growing. You all have made such a difference to our Hematology/Oncology Clinic and The Floating Hospital. Thank you to all contributors. See the “Boston Harbor Walk” link below for details.
Michael, Stephen, Joseph and Katie (friend and neighbor) participated in holding a Lemonade Stand, last Saturday, for Alex Scott. Alexandra is a little girl with Neuroblastoma (like Joseph) and her dream is to rid children of tumors. She started a Lemonade Stand when she was four years old to raise money for Pediatric Cancer Research and now, eight years old (still battling Neuroblastoma) holds Nation Wide Lemonade Stands. She is dedicated to this project and it keeps her going. We had a great time setting up our stand at the town baseball field. The boys and I made signs and Joseph and Katie enjoyed pouring and serving. In only a short time we raised almost $300.00 and later another $100.00. Thank you baseball fans and thank you Stephanie, Joy and Robin for your contributions. “Alex’s Lemonade Stand” can be found at Alexslemonade.com. Her 2004 Lemonade Stands have raised $400,000.00 ....and still growing.
Well, I thought Joseph would have started Chemo last Monday. I should know by now not to say anything is for sure. We were there Monday morning ready to start, but his platelet count was not high enough. The good thing is, we got to leave clinic early enough to greet the boys after school on their birthday. Happy 12th Birthday Michael and Stephen! Joseph had outside counts checked on Wednesday and later got word that he could start Chemo on Thursday. More Cytoxin and Topotecan for five days and IV fluids at home during the night. He started off feeling well, but I think it is now beginning to hurt his belly and causing a little nausea at night. He had Chemo through the weekend and had his last dose today (Monday). His red count is already low so, we’ll be back in Boston by Thursday for a transfusion.
I hope all you Dads had a nice Fathers Day. We had a nice Fathers Day celebration, after Chemo. We met up with Family at Steve and Lynda’s (Vin’s Brothers house) and were able to enjoy Fathers Day and celebrate Michael and Stephens Birthday.
What’s next....We need to play a game called Blood Counts VS. Travel. We are ready to book our consultation with the doctors at CHOP for sometime next month. We need to wait for Joseph’s counts to drop, get his transfusions and when the counts are up again, we go to Philly. We have tentative plans for him to start treatment at CHOP the beginning of August. Again, I’ll report in as I get details.
Holly
Wednesday, June 9, 2004 10:07 PM CDT
It’s been a while since my last journal entry so, let me fill you in on what’s been going on. Joseph’s last round of chemo went pretty well. He wasn’t to sick, but his counts did get knocked down a bit. He had an MIBG on May 27th that showed discouraging results. There were 2 new findings of Neuroblastoma in his head. The 5 “hot spots” that showed up in March are still there on this last scan. We are discouraged and had hopes that those spots would be smaller or even gone. He later had a CT scan to correlate the findings. The good news is the CT scan was clean, other than the suspicious site in his abdomen. All this means is that the Neuroblastoma is there, but has not gotten big enough to cause trouble in the tissue, organs or bone. He will have an MRI tomorrow to confirm findings. The MRI will determine if there are any abnormalities caused by the Neuroblastoma cells. After Joseph’s scans were complete he did well at home. He did need some blood transfusions, but otherwise he was jumping off the couch, running around the yard and just being himself. Joseph’s Oncologist has recommended that we go to Childrens Hospital of Philadelphia (CHOP) to discuss the possibility of MIBG treatment. This is some powerful stuff. I think of it as internal radiation. We will learn more about the treatment when we meet with the doctors in Philly and will then decide if this is best for Joseph. I remember 3 years ago I was trying to decide what outfit I should dress him in. Anyway, I’ll keep you posted on that.
Speaking of Philly, there’s an 8 year old girl, Alex Scott, whom has been battling Neuroblastoma for 7 years. She is treated at CHOP and is the young founder of Alex’s Lemonade Stand. She is holding a Nation Wide Lemonade Stand on June 12th. Maybe you saw her on Oprah last Friday. I have been following her website and have been inspired by her family and Alexes good attitude. She says, If you’ve got lemons, make lemonade.” The money raised will provide funds for Pediatric Cancer Research. My family will be holding a stand at the ball field in my home town to help this little girl reach her goal of 1 million dollars in 2004. The boys are preparing their artwork and are ready to serve lemonade. You can check out Alex’s Lemonade Stand at www.alexeslemonade.com.
The Boston Harbor Walk for The Floating Hospital is also this weekend. Good thing Joseph’s counts are on the upswing. He’ll be busy! Our team, “Team Messina” has passed our goal of $3,000.00 and has well over $4,000.00 so far. I was hoping to have at least 25 walkers and today we have 37 that have signed up. Friends and Families: You’ve done a great job! Your time, effort and donations will make a difference in the world of pediatric cancer at The Floating Hospital. Thank you!!! To follow our team, log on to the link below www.bostonharborwalk.kintera.org.
Please pray for Alex for strength for her big day on June 12th.
Thanks for all your support.
Wednesday, May 26, 2004 9:00 PM CDT
Joseph began another round of chemo this week.. His doctor feels strongly that he should continue with a couple more rounds. He’s back on Cytoxin and Topotecan (some harsh drugs). The last round went so well and his counts were stable. He felt fine during and after. He even snuck in a couple of days at preschool. This round....a little different. It is out-patient chemo, which makes for a long day in Boston. I am grateful that Vin has been able to come in with us this week. Joseph is in need of a lot of mommy and daddy TLC. He requires a lot of hydration and pre-anti-nausea drugs before receiving the chemo. When that is complete he gets more anti-nausea drugs and another drug called Mesna (to protect his one precious kidney). He has been having waves of pain and nausea, but today he tried a new drug and it seems to be working so far. At home I hook him up to an IV pump to keep fluids running through him during the night. Today, he had a nuclear medicine injection in preparation for an MIBG (body scan) tomorrow. On Saturday, he will have an MRI...since we will already be there for chemo...why not. Let’s pray for the best.
Holly
Thursday, May 13, 2004 11:40PM CDT
Thank you for the thoughtful Mothers Day messages. You are my cheerleaders. We had a nice Mothers Day. The day started off rainy, but in the late afternoon the sun decided to come out. So, we decided to go for a little nature and history at the Old North Bridge in Concord, MA. We grabbed a picnic lunch and parked ourselves next to the Concord River. The new web photos were taken in Concord at the battle field.
Joseph has been feeling great. He just completed “day 9" of this round of chemo. He’s got one more day and we are done (for now). We are scheduling scans in a couple of weeks. The results of the scans will determine what happens next. In the meantime, we wait and get his counts checked frequently, since they are expected to be low by next week.
Thanks for all your support with the Boston Harbor Walk for The Floating Hospital.
Holly
Wednesday, May 5, 2004 9:48 PM CDT
So far so good. On Monday, Joseph’s counts were still a little down, but good enough to start Chemo. The doctors predicted that Joseph would do well with this mix of Chemo and he IS doing very well. The Chemo (Irinotecan) runs over about a half hour (IV), he swallows four Chemo pills (Temozolamide), he gets a little fluid and some Zofran (nausea meds) and we are done. It has been about a four hour day in Clinic. That’s not bad at all. I thank God for my friends whom have scheduled rides for us every day until my back heals up. THANKS GIRLS! You’ve been great. Joseph enjoys having the company at “his clinic” too.
We’ve also been busy preparing for the annual Boston Harbor Walk for The Floating Hospital. We hope to be able to walk Joseph in his stroller this year. You can follow our team by checking out our web site at www.bostonharborwalk.kintera.org and click on “Team Messina.” or you can click on the link on this web site below.
I’ll update this site when he completes his Chemo. And new pictures too. For all you moms out there, have a HAPPY MOTHERS DAY!
Holly
Friday, April 30, 2004 8:22 AM CDT
Joseph did not start chemo this week. His counts are still too low. I do expect him to start on Monday. He has been doing great at home this week, enjoying the nice weather. Next week Joseph will have out-patient chemo. We’ve never done that before. This mix of chemo should go a little easier on him. This means that he may not feel sick and his counts may not drop as low as they did this past round (sounds good to me). I’ll keep you posted.
Happy Spring!
Holly
Saturday, April 24, 2004 4:23 PM CDT
Joseph was discharged from the hospital last Friday. Later that day he was belting a baseball into the woods. I guess he was feeling better. His leg pain was much better also. While he’s been at home this week, he’s been getting his counts checked frequently. He has needed platelet transfusions and is still receiving his daily shots at home to bring up those white cells. Since his counts are still considered low, he may not be able to start his next round of chemo on Monday, as planned. We’ll get his counts checked tomorrow morning and that will determine when his next round of chemo will be. His next round should be a little easier on his blood counts. He has lost his hair again, but not his good spirit.
Tomorrow I, Vin, and the boys are going to a Celtics game. Thank you Karin for setting us up. It will be nice to get out with the big boys. The boys got sort of ripped off this week. It was school vacation and I’ve been out of commission with a back injury. Oh well, I can’t complain. All five of us were home all at once. It will be nice to close off the week at The Fleet Center and then back to school on Monday.
Thursday, April 15, 2004 11:02 PM CDT
Joseph was admitted to The Floating on Easter Sunday with a fever. First, let me mention that he enjoyed the weekend with his cousins from Pennsylvania and he had a great time at the neighborhood Easter egg hunt on Friday. Unfortunately, it was time for his blood counts to drop to zero. He seemed as if he wasn’t feeling well Sunday morning. He had no fever, but was a little clingy and wanted me to hold him. Before we left for Uncle Mark’s house for dinner, I grabbed my “ready to go” overnight bag, just in case. Good thing....because he spiked a fever late that afternoon. We drove to Boston directly from Uncle Mark’s. Vin and the boys brought us to the ER where Joseph was checked in and began his antibiotics. The boys went home and Joseph and I were escorted to our room. [Thanks Sue C and Jamie for the surprises you left on his pillow] The first couple of days were rough. His fever was stubborn and new antibiotics were added to cover a wider range of possible infection. His leg was hurting and he didn’t want to walk. Pain medication was added and increased until he felt comfortable. He also had a little cold that was annoying him. He basically felt crumby. Today (Thursday) he seemed to be a little better. He finally has a couple of white cells. From here his cells should double and triple quickly. He has had blood transfusions of red cells and platelets so, hopefully those cells are on the rise too. Vin is having a “sleep over” with Joseph tonight. He misses Joseph and I miss Stephen and Michael. I’m always torn leaving Joseph, but I desperately need to catch up on some sleep and desperately need to spend some time with my big guys. We are hoping that Joseph will be home for the weekend. We’ll have school vacation next week and the following week Joseph should start his next round of chemo. Ugh!
Marathon Monday - GO EILEEN!
Saturday, April 10, 2004 11:44 AM CDT
Joseph was admitted at The Floating Hospital on Friday, April 2nd, for his first 5 days of chemo. He did great! This brew of chemo was gentle on him. However, it is certainly doing its job because the pain in his leg seems to have faded. The Floating team did everything in their power to get Joseph discharged early on Tuesday so that he could attend his art show at preschool. He was a little tired and a little overwhelmed by the crowd, but he was so proud of his work. Mrs. Clark, you did a wonderful job putting this together. This show meant alot to Joseph and it was so nice for us to observe him as a normal school child. And thanks Mrs. Eastman for helping Joseph with his artwork when he was absent. He was so excited to bring his artwork home, but didn't want the art show to end. So, we set up a corner in our dining room to display his work for visitors to view.
Joseph's next round of chemo is in a couple of weeks. His counts are dropping now, as they should, so we need to wait for them to recover before the next round. After round two he will be re-scanned. You want to know what's next? Me too! Hopefully, the disease will be under control for him to start a new protocol OR the disease will be gone. Wouldn't that be nice?
Today he is looking forward to searching for Easter eggs in the backyard that his big brothers hid for him. Wishing you a Happy Easter from the Messina family.
Holly
Saturday, April 3, 2004 8:30 PM CST
On Thursday morning Joseph woke up with pain in his right leg. I did not think too much of it since he had recently had bone marrow biopsies which could make him a little sore. And the disease was in his other leg. A few minutes later he fell. Then he was playing on the floor and crawled to the coffee table to help himself up. I knew, for sure, that he was in more pain than he led me to believe. After doing a mommy exam (does this hurt? does this hurt?) I realized that the pain was coming from his right hip where there IS disease. I called the doctor and before you know it our lives are in another whirlwind. Joseph’s MIBG results came back with even more disease and in new spots. He now shows evidence of neuroblastoma in his sternum and rib cage, aside from the elbow, thigh, and hip/abdomen. The doctor(s) in Boston and RI feel strongly about treating Joseph immediately. We all agree that he will have an immediate response to Chemo so, that is where we are at right now. Joseph was admitted to The Floating Hospital yesterday to begin the first dose of a five-day Chemo. There will be NO protocol in Rhode Island. Joseph may be able to begin Fenretinide later. We will worry about that later. I’m not sure, at this time, what the plan is. I know that, for the moment, we are trying to control (or shrink) the disease that is evident and make him more comfortable. He is taking pain medicine and it seems to be helping. The combination of Chemo drugs that he is receiving is new to him and we pray that the neuroblastoma will surrender.
Joseph is so happy to be back at the Floating. He chats with his nurses like he saw them yesterday. He is certainly well cared for. A lot of people have said to me, “I don’t know how those nurses do it.” I think they have the gift to make a child feel special and that alone is part of healing. They do not become numb for feeling sympathy and they DO get attached and sad at times. How could you not? I am grateful that Joseph is in such good care and enjoys having “sleepovers” with his nurse friends. This weekend the boys and I have a room at the elegant Neely House. Vin is having a “sleepover” with Joseph. We are all hanging in there. Once Joseph feels good, we feel good. We live minute to minute grabbing every little piece of enjoyment we can. Coffee ice cream sounds good right about now.
Take care,
Holly
Wednesday, March 24, 2004 10.33 PM CST
Today we had an appointment at Hasbro Childrens Hospital in RI. And yes, we finally have a protocol for Joseph. Here's the plan: tomorrow we go to Boston for a series of tests in preparation for the Fenretinide. We'll get a baseline of vision, liver function, heart, etc.. Next tuesday, Joseph will have bone marrow biopsies in RI and then an MIBG injection in Boston that afternoon. Wednesday he will have the MIBG scan. We are hoping that it will show little or no progression of the neuroblastoma sites. Friday, April 2nd, he should begin treatment. Treatment will involve taking 5 pills, 3 times per day. Yup, that's 15, very large, pills a day. They cannot be broken, crushed, or cut. They say that this is the hardest part of treatment, taking the pill itself. Hey, we'll take it. There is hardly any side effects and it is much less toxic than chemo. His blood counts should remain normal, but he will need frequent blood draws to check liver function and more. He should be able to remain home and attend preschool during treatment, aside from appointments. So, it looks like we will be traveling to Hasbro for a while and then transferring to Boston when this same protocol opens up there. This is a phase II study and has been around for a very short time (maybe 2 years). It has been very successful in shrinking tumor. However, it is not yet considered a cure. We can only hope that this will be THE CURE.
Thanks for checking out this update. We are grateful to you for following-up and learning of what is going on. It's nice to know you are there, thinking about Joseph and our family.
God be with you
Holly
Saturday, March 20, 2004 10:45 PM CST
We are still waiting for the right protocol. What is the right protocol??? Like I've said before, we've already used the big guns and now we are searching for trial studies that will not effect the quality of Joseph's life AND will possibly clear his body of neuroblastoma once and for all. We had discussions last week with several doctors, from various hospitals, trying to gather more information so that we can get this little guy started on something. Joseph is feeling fine and continues to go to school, play at home, and entertain the family with his comical personality. He looks so good on the outside. I thank God for giving Joseph that continuous smile and energy. Anyway, we are heading into Boston (Floating Hospital) on Monday to possibly start low doses of chemotherapy. His Oncologist really wants to get him on some kind of plan....like...yesterday. We do too! There are still a few concerns that we need to clear up. If he starts chemo, at least we are doing something, but he will not be able to start the fenretinide protocol (pills) after doing so. This was the protocol we were leaning towards, but it seems he may have to wait too long before this protocol opens up. We may discuss this further with the doctors at Hasbro in RI, next week.
extras: Joseph's biopsy of his shoulder was negative (yeah....some good news). Michael and Stephen are not a bone marrow match. Not concerned about that anyway. At this point, another stem cell transplant seems to aggressive. FYI - yes, Michael and Stephen are a match to each other since they are identical twins.
Thank you for the kind messages in the guestbook. Joseph likes listening to me read them to him. We really appreciate your support. Thanks!!!
Holly
Saturday, March 13, 2004 11:00PM CST
We spoke with Joseph's Oncologist in Boston on Thursday. He does have a few options (protocols) for Joseph that we could try. It was a long day. We have quite the decision to make. Nobody knows the future of Joseph's disease and what it will do next, but what we do know is what Joseph's disease has been responsive to in the past. Relapse is not good and relapse twice is definatley not good. What I mean by "not good" is; We have tried several powerful treatments to get rid of this nasty cancer and it still continues to show up. He has been fortunate that his tumors have showed up in places that can be treated. How much MORE treatment can Joseph's little body take? As his mom, I want to go in and blast this thing out of him with as much radiation and chemo that he can tolerate, but from a medical point of view, this would not be wise, in Joseph's case. The Ongologist in Boston is recommending that we are not so aggressive. Most studies must be able to follow his disease to make sure that it is working. If we were to radiate his tumors it would instantly kill that one particular site leaving his, widespread, neuroblastoma cells to create problems elsewhere in the future. The Oncologist recommends that we attack the most current findings of neuroblastoma bringing him to the point of remission first. In the meantime, we hope to buy some time and find a CURE. In most relapse cases, especially a double relapse, the survival rate is next to nothing, but we are not giving up hope. Joseph's doctor is working very hard to find a protocol that will keep Joseph happy and healthy. Right now, we are leaning toward a protocol, possibly in Boston, that requires Joseph to take a few pills a day with very little side effects. Sounds to good to be true, ha? This pill (Fenretinide) has a very good response rate. He would have very little side effects and would follow up with additional treatment. Another option would be more chemo that he has not yet had (blah blah blah). And last, we're looking at an MIBG treatment at CHOP. This involves an intense isotope (or nuclear medicine) injection before MIBG. The isotope attaches itself to neuroblastoma cells and radiates them (kills those cells). Sounds easy, but is more harsh and complex than it sounds AND it would mean more traveling to either Philedelphia or California (boo hoo). He would also need stem cell rescue after this type of treatment. The thoughts of putting him through another transplant kills me. However, if we need to go that route, Michael and Stephen have been tested to see if they are a match.
The Doctor would like to start treatment with Joseph no later than next week. Please pray that we make the right decision for Joseph. We are all very nervous and concerned.
It sounds crazy, but Joseph and I actually miss New York. Let me be more specific... NOT treatment, but the friends we made. Joseph met a little buddy named Christopher a few rounds ago and we have been on the same schedule in New York together. His mom, Lois and I hit it off, especially when we found out that we both had twins and we both had a son with neuroblastoma AND we both watched each other go through 3F8 treatment. The day we said goodbye to them we had no idea that we would not be back any time soon. Well, I sort of had a gut feeling. If anyone from New York Ronald McDonald House is reading this we want to wish our best to our friends that we met during our stay. Alli, I know your almost done with treatment. You go girl! Joseph just adores you and I am so glad we met you. Play some BINGO cards for us. If you ever decide to see the sites in the Boston area let me know. Amanda, we are so happy for your positive results with 3F8s. Stay strong...the pain is worth the end result (easy for me to say...ha?). You are so brave! Leigha, we pray for your Nbl to leave your body. Joseph is still making your dad "spicy meatballs". Belinda, I hope you all get back to Florida soon and for a very long time. You have such a great family that all came together to keep that smile on Kevin's face. Shirley, I never got to say goodbye. I hope Kevin has a fast recovery from transplant. You are in our thoughts and prayers.
To MSKCC:
Vicky, Joseph misses your play-doh lunches. Thanks for paying extra special attention to him. Laticha, I don't know how you always keep your cool. You are so great at coaching the kids through the tremendous amount of pain they go through. I'll never forget the day I thought Joseph was going to hit you and he reached up and gave you a kiss instead. You've got somethin' special girl. Catherine "Cat", thanks for all the days you sat with me while I grilled you about the 3F8's. I was so sad to see the kids in pain. Thanks for sharing all your knowledge with me. "Fingerstick Faye", Joseph still talks about you. Even though you stuck him for blood everyday, he still adored you. Dr. Kushner, If I could only know what you know for a day. Thanks for turning my son into a Yankee fan.
Check back again next week and hopefully I can report on a plan.
Holly
Sunday, March 7, 2004 10:48PM CST
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
Monday, March 1, 2004 10:41 PM CST
November/December 2003
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.
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
October 2003
THE WORD THAT WE NEVER WANTED TO HEAR, “RELAPSE”
Dear Family and Friends,
On June 24th and 25th, Joseph had a scheduled CT Scan and an MIBG (full body scan). Before leaving for vacation, we received a call from his Oncologist stating his concern for a “hot spot” that showed up on the scans. Surgery was then scheduled for July 8th. The Surgeon removed a “golf ball size” tumor from Joseph’s neck and chest. The following week he had a new port (central line) placed in his leg and he started chemo. After 5 days of heavy doses of chemo he was released to go home. He tolerated the chemo very well and was happy to have some of his nurse friends taking care of him again. On Friday, July 25th, we were back in the E.R. with a fever. Joseph’s blood counts were low and white cells were at zero. We were admitted and five days later discharged. Here we go again.
Here’s the plan. Neuroblastoma is an aggressive cancer. Joseph has worst case, Stage 4. The Oncologists believe that the cells that developed this tumor somehow survived treatment. His bone marrow was also tested and came back positive with neuroblastoma cells. We are frightened to think that there may be other cells waiting to cause trouble. Joseph will undergo 2 rounds of intense chemo (one already completed) and then we are off to Memorial Sloan-Kettering in New York. MSKCC has an entire team specific to Neuroblastoma. They will infuse an antibody into Joseph that will seek out neuroblastoma cells and kill them. (please see MSKCC web site for details on the antibody (3F8). It is too complex for me to explain) Joseph needs to receive 40 infusions in total, in increments of 10. We will spend 2 weeks in New York and 2 or 3 weeks home and repeat this process until he has had all 40 infusions. Why didn’t we do this before?? Well, there is an answer. This antibody is only administered in selected or relapse cases. It is not only very expensive, but is still considered research AND is a very painful procedure. When we finish up in New York Joseph will need radiation to the tumor site.
For now, we pray for strength to endure the impact that cancer has brought into the lives of Joseph’s family and friends. We are all in shock. Michael and Stephen need prayer for the times that they will be without a mom or dad or both while we care for Joseph in NY. They have had a very disappointing summer and they worry about Joseph.
We are waiting for Josephs counts to recover from the last round of chemo and then he will start the next round. When he recovers from that we are off to New York. I’ll try to keep you posted in between hospital trips.
Holly
SECOND ROUND OF CHEMO BEFORE STARTING ANTIBODY TREATMENT
We arrived at the hospital on Monday to start Joseph's second round of Chemo. After checking into his room he spiked a fever. Chemo could not be administered until the cause of the fever was known. After having blood cultures and dye studies of his central line, it was discovered that there was a clot at the end of his line. The clot may have been infected. Antibiotics did its job and Chemo began on Thursday.
On Friday, Joseph celebrated his 4th birthday. We decorated his hospital room and the nurses got him a cake. They showered him with presents. He had many visitors and had a great day. He received several cards and wanted to know how the mailman knew he was in Boston. The boys and I stayed at the Neely House so we could all be together for this special day.
Saturday Joseph began to feel the effects of the Chemo. He is feeling a bit tired and nauseous, but is in good spirits. He remains playful regardless.
He will finish Chemo on Monday and will, HOPEFULLY, come home soon after.
Thank you all for your thoughts, prayers, and happiness you brought to Joseph on his birthday.
God Bless,
Holly
ENDING CHEMO - BEGINNING OUR PLANS FOR
MEMORIAL SLOAN-KETTERING
Last update ended with Joseph having his last round of Chemo (August 18th). Since then, he had a 2:00 am admission due to, the usual, low counts and fever. After a week of transfusions he was able to come home. He has handled these high doses of Chemo remarkably well. It is taking a while for his body to make its own platelets and red cells, but we continue to make trips to Boston for blood support.
We have a little bit of news regarding our trips to Memorial Sloan-Kettering Cancer Center in New York. We now know that our first departure will be on Monday, September 15th. Joseph will undergo four days of testing/scans and we will return home Friday or Saturday. We have decided to take the boys out of school and bring them with us. We feel this will give them a chance to see where Joseph will have his treatments and they will be able to visualize where we will be staying. Our temporary home will be at the Ronald McDonald House in Manhattan. We do not have a schedule for the antibody infusions at this time. The Oncologist in New York will review all tests and then we should have a plan.
JOSEPH BEGINS PRE-SCHOOL
I am happy to report that Joseph attended his first day of preschool today. He has been looking forward to "going to school" for so long. With the doctors permission and precautions to be taken, off he went. He let me take his picture at his cubby and than he sat down with the other kids and began his play. He was beaming with smiles. I was thrilled to see him enjoying himself in such a “normal environment” (as I spied through the window blinds). I'm sure he'll have a lot to share with me when I pick him up.
REQUEST FOR PRAYER
My prayer request is for Joseph to feel comfortable with the new environment in the big city and strength for our family when we travel together and apart. Also, Joseph has a new friend at the Floating Hospital named Madison. She is 4 yrs. old and newly diagnosed with neuroblastoma. We pray for courage during treatment for Madison and strength for her parents.
Thank you for your continued support.
Holly
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 friend.
Holly
OUR PLAN TO MEMORIAL SLOAN-KETTERING TO BEGIN 3F8
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
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