Peter Marcello Zucca "Mission Miracle"

1st day of Pre-K!
August 2008

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11


Welcome to Peter's Web Page. It has been provided to keep you updated about Peter's journey back to good health.

Peter had a MRI on December 23, 2003; and was diagnosed with a pelvic mass. On December 24th he underwent needle biopsy of his abdomen and was diagnosed with a Rhabdomyosarcoma a malignant lesion of the muscle. On December 31st he underwent a lung biopsy, his tumor had spread to his left lung. A central line, an access port with two different tubes on it, was placed for easy access of his chemotherapy. He underwent two courses of chemo and was rescanned. His tumor doubled in size.

We were referred to Children’s Hospital of Philadelphia for consultation with two of their doctors. On February 4, 2004 Peter’s 1st Birthday, we were told that he was not a candidate for surgery or radiation. In fact we were told that he had 2 months to live. We returned to duPont Hospital and decided to try one more type of chemotherapy. After completing two courses of this new chemo he was scheduled for a scan.

Peter was rescanned on March 19th. There was a significant reduction in the size of his tumor. However, his tumor was still very large and at that point was not operable. He would need a significant reduction on two more scans and then hopefully the tumor could be could completely removed. If they can remove the tumor completely he would not need radiation therapy.

On April 7th we were at duPont for Peter’s routine examination and to be admitted for chemotherapy. After his doctor examined him she turned to us and said; “I do not want to give false hope but I cannot find his tumor.” We were astounded, since Peter was supposed to pass away by Palm Sunday and there it was the Wednesday before Easter and the doctor couldn’t feel his tumor.

Our next appointment at duPont Hospital was April 20th. If Peter’s blood counts recovered and this checkup went well we could take him to Disney World April 23rd-30th.
Peter’s next scan was scheduled for Tuesday May 4th.

We made it to Disney World; we had a wonderful trip, and Peter held up very well. We enjoyed the break from doctor visits and hospital stays.

Peter’s May 4th scan showed another significant reduction in the size of his tumor. His doctors asked our permission to send his films to 3 pediatric surgeons in New York, Pennsylvania, and Florida. Peter’s tumor is now smaller than it was at the time of his diagnosis in December. Unfortunately it is at a very bad spot. Two of the three surgeons have informed us that they would not operate on Peter because they would have to mutilate him to get around his tumor. As you may know radiation on a child under the age of two is very damaging and for us is also out of the question. We have chosen to proceed with his chemotherapy. Peter’s next scan was scheduled for June 15th.

Praise God, on June 15, 2004 we learned that the third doctor had reviewed Peter’s scans and wants to meet with us. He works out of Sloan Kettering in New York. He is doing a limb sparing surgery that includes radiation therapy, while in the operating room, using shields to protect healthy cells. We were told that Peter’s scan, which was performed on June 15th, would have to show his lungs clean and his tumor staying the same size or smaller. On the 16th we learned that there was another significant reduction in the size of the tumor and that his lungs look good.

We are traveling to Sloan Kettering on July 8, 2004 to meet with a team of doctors who will be coordinating Peter’s care, should we choose to proceed. This surgical procedure is very difficult and could possibly include the removal of Peter’s bladder and a resection of a part of his bowels. His sciatic nerve is also involved and the tumor will need to be removed from it as well. This will most likely result in a drop foot, which will require a brace on the foot and ankle to allow Peter to walk.

When Dennis and I were staying at duPont Hospital during Peter’s first admission we opened our Bible one night to Psalm 40. There we read the following: “ I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be Astounded. They will put their trust in the Lord.”

We pray for a miracle of healing for Peter; a full recovery from his cancer with his entire precious parts intact. We pray that God will astound the medical community and all of us with his precious gift of life.

Journal

Friday, October 24, 2008 8:07 AM CDT

I was able to post new pictures, yesterday. I’m sorry but I haven’t been able to figure out how to re-size them. We have been very busy since our last update. Peter had a wonderful 5th birthday party at Tumbleweeds gym on Saturday afternoon, February 16. It was a pirate party complete with balloons, cake and a Piñata. They have all sorts of equipment for the children to play on and he had a wonderful time.

He had a speech evaluation by the intermediate unit on February 28th. Surprisingly enough his speech vocabulary and articulation remain a full 2 years above his age and he tests as a 7 year-old. He will not need to be re-evaluation for speech again, unless we see a problem with the development of future speech sounds. This is really remarkable given his hearing impairment.

We went back to NYC on March 6th for an evaluation with Dr. Sklar, at Memorial Sloan-Kettering Cancer Center. Dr. Doom, I mean Dr. Sklar is the head of the late term side-effects clinic. The evaluation started with his assistant asking some questions, taking some notes, and performing a physical on Peter. Then Dr. Sklar entered the room. He started to review with us a packet of info on all of the treatments Peter had received and all of the myriad of problems that he will have in his life, as a result. It was ugly. Dennis took Peter out of the room so that he would not hear any more of it and I stayed for the rest of the torture. We were told to have regular evaluations for his heart, lungs, hearing, kidney’s, skin cancer, dental problems, learning delays and disabilities, etc. etc. etc. YUCK!!! We were asked to return again to see Dr. Sklar a few times per year. We will return only 1 time per year during our scan visit. We don’t have the stomach for it and he is really only collecting data from all of the physicians with whom Peter is actually treating.

We went to NYU Medical Center on March 13, 20 & April 3 for Neuropsychology evaluations. They were long days and Peter handled the testing well. Dr. Rosen was very sweet to Peter and made several recommendations regarding school, hearing, and fine motor issues. As a result of our visit there Peter is in Pre-Kindergarten instead of Kindergarten. Her blanket recommendation for any child that is so ill at such a young age is a minimum of 2 pre-school years. We kept Peter out of pre-school until we were fairly certain that he would survive his cancer. We did not want to take it away from him should his disease return and we did not want to subject all of the children and their families with reality of pediatric cancer and the loss of the life of a child. So Peter had only completed 1 pre-school year and he is getting his 2nd year in now.

Dr. Rosen suggested that we have Peter’s hearing evaluated again and put hearing aids and an FM System to work to aid his future speech development and his ability to follow and participate in classroom activities. She also felt that his fine motor skills were not up to speed. This is from a side-effect of 1 of his chemo’s. It causes neuropathy of the hands and feet.

We traveled to AI DuPont in Wilmington, DE on March 17th, Gary at Lawall and Sons prosthetics casted his right leg so a new brace could be made. We dropped off a new shoe so that a lift could be added.

We returned to DE on March 24th for the fitting for the new brace and to pick-up the brace and shoe.

We were back in NYC at Sloan-Kettering on April 7th & 8th for pre-admission lab work and a day in the O.R. to have multiple cavities filled a root canal and sealants placed on his teeth.

On April 17th we saw Dr. Rosen at NYU and we will return to see her on a yearly basis.

April 24th we return to A.I. DuPont for evaluation by Dr. Freeman Miller. Dr. Miller is Peter’s orthopedic specialist. The visit was fairly uneventful except for the fact that he feels there will be some hip surgery in Peter’s future. His right hip socket is not forming properly. He wants to graft a hip socket for him out of cadaver bones. As a result of Dr. Miller’s hip comments we have joined the YMCA and placed Peter in swimming lessons. Our hope is to get him as strong as possible before surgery and hopefully be able to avoid it. If we are unable to avoid the surgery and he needs PT we can live at the Ronald McDonald House in DE and he could rehab in the pool at DuPont.

May 15th he underwent an O.T. evaluation with the intermediate unit. I requested the evaluation based on Dr. Rosen’s suggestions. I was very dissatisfied with the test and the results. I was told by the tester that, “my child is my responsibility not the community’s” and that I should take my child and use my own insurance to have him receive O.T. not expect the I.U. to provide services. “When my son needed speech therapy that’s what I did.” I was furious! I was not surprised to learn that Peter just missed the cut-off for services. I will be very happy to start Kindergarten next fall and have all of his services thought the school district.

June 29th we spent the afternoon in the local E.R. Peter had a severe ear infection.

June 30th we went back to Lawall and sons to have his brace lengthened.

July 9th we went to the pediatrician to have him cleared from the ear infections because we had an afternoon appointment with our new audiologist.

July 9th Dr. McHugh, at Children’s Hospital of Philadelphia, Bucks Co., evaluated Peter and said, “He would definitely benefit from bilateral hearing aids”.

July 11th we went to see Dr. Kauffman, in Collegeville, PA, to have ear molds made for a trial with loaner hearing aids.

July 21st we returned to Dr. McHugh’s office with the bright blue ear molds that Peter had picked out for himself. She attached the molds to the aids and programmed them for the missing frequency. When we drove home I put Peter’s favorite CD in the player. It was the first time that he ever sang along. He has been singing ever since.

August 15th we again, saw Dr. Kauffman for new ear molds. They were made incorrectly so we returned on August 28th to have new molds made

September 3rd we returned to see Dr. McHugh to have Pete’s permanent hearing aids and FM system programmed. His new aids are bright blue and silver with green, blue and white swirl ear molds (you can barely even notice that he’s wearing them…LOL).

October 2 we were back at DuPont with Dr. Miller and LaWall & Sons. Dr. Miller indicated the Peter’s is having more noticeable signs that his pelvic radiation has caused permanent damage to his right hip and pelvis. We had a new shoe lift added and he was casted for a new brace. Oh, but we can’t’ have a new brace because he out grow his last one faster than the insurance company say’s that he is allowed to. Got to love the mentality of the insurance industry!

Today we have a dental visit near home to get his teeth cleaned and to evaluate how many cavities he has prior to our return trip to NYC in January for scans and many other things.

Thanks for all your love and support. Please continue to keep Peter and his many cancer related health issues in your prayers.

Hospital Information:

Happily at home in Harleysville
P.O. Box 452
Harleysville PA 19438

Links:

E-mail Author: rosejellyjakesplace@msn.com