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Thursday, September 4, 2003 9:20 AM CDT I want to thank all of you who offered me support and the kind words through my daughter’s passing. Special thanks to Father Mike Pace, George Forbes and his prayer group, Dr. Farmer and his staff, Dr. Liben and his staff, the nurses and staff in 7C1 at the Montreal Children Hospital, Dr. Albert Doctor Moghrabi MD, Dr. Fink in my mailing support Group, and many other Doctors which are numerous.
As most of you know, I did have a feeding tube installed, and later had to add an oxygen machine. I’m not 100% sure of the dieing process of starvation or dehydration, but what I can tell for certain, my daughter did not have pain of hunger or thirst. She died peacefully. I hardly gave her dilated for pain. I usually had to give her dilated when I moved her or she was having trouble breathing. But a note, if you use a feeding tube, I had to cut to 1 can a day of Isosource, and her pills and vitamins were crushed and mixed into a blender with her food. Since she was not moving, she did not need much food. Too much food made it more difficult for her to breath. The doctors explained that in a lying position, too much fluid may build-up in her lungs.
My wife decides to have a pastor over that claims he has special healing powers. I was a little uncomfortable but than again I had to try anything to try and save my daughter. I went to one of his preaching and I was a little surprised of what I saw at his church. But the problem is that this pastor was trying a little too hard and making promises to my wife irregardless that it was a GBM4. I don’t think he knew what a GBM4 is.
The pastor was at my house Wednesday night and in the prayers he told us to meditate the cross of Jesus Christ and the blood of Jesus dropping on my daughter. In my meditation, I carried Sabrina in my arms and hand her over to Jesus and told him, please save her now, but if you have no intention to save her than take her now because she has suffered enough as well as the family. Ten minutes later, while my wife was going downstairs to drive the pastor home, I walked back in the bedroom, 7:30pm, and saw that my daughter stopped breathing. My wife was already at the door and I know she would have panicked and forced 911 to resuscitate her. I did not want to see her hooked up on machines to keep her alive. My son was on the next room playing on his computer. I shook her to see if she will restart breathing, than I checked her pulse and there was none, so I started mouth to mouth and pumped her chest. It did not work. I knew it was over. What is also surprising is that my wife’s water broke at 7:30pm July 16th and she had a caesarean on 12:20am.
I called 911 and told them just send the car not the ambulance. They send a crew of 3 with all their equipments. I pulled out the letter from palliative care doctor telling them it was an expected death. They than respected my wishes. The house filled up fast with grandparents, sisters, nephews etc. My wife called and I told her come home fast because I needed help. I did not want her to know while she was driving. When she did arrive home, what a scene, she went crazy and the ambulance crew had to take over to calm her down. We had to give her ativan to calm her down. The funeral homes finally send the van to pick up my daughter around midnight. After some pleading, I convinced them that I want them to use a stretcher and not zip up a bag covering her face. She looked good; she looked like she was sleeping.
Next morning, to the funeral home to make arrangements and of course they try to take advantage of you when you’re down. Lucky I made my shopping prior so I new exactly what I wanted. Did you know that a stainless casket is much cheaper than a brass or copper casket! And most important, it doesn’t have welded joint where water can seep in. My wife with her sisters went for the flowers. Of course she over did it.
The wake started a 7pm. They did a great job with her makeup and looked very natural. It seemed she was in a deep sleep. The people that came that night were so numerous. We had around 300 visitors within the 3 hours. The room seated approx.100 people, people were standing everywhere.
The next day, Friday, the wake was from 2 pm to 5 pm and 7 pm to 10 pm. The afternoon wake was a little more relaxing and had some time to converse with the visitors. Most of them were co-workers and acquaintance. I think there were around 200 visitors in the afternoon. The evening visitors, was enormous. I never had time to sit, people were coming non stop. I lost count or even the ability to estimate. There was one woman who said that she never knew us or Sabrina personally but saw her perform back in 1997 and had to come.
The next morning, Saturday, the limo picked up the grandparents and us. At the funeral home was suppose to be just our families including brothers and sisters, but it didn’t turn out that way. We ended up over 100 people with aunts and uncles. To see that coffin close, knowing it is the last time I will see her, almost killed me and my wife. There were too many flowers to take to the church and cemetery. We filled up 2 cars with flowers and left more than ¾ behind.
When we entered the church, I couldn’t believe the amount of people. I was not able to look at them with the fear of breaking up. My daughter, her twin sister, did the eulogy and to my amazement, she did not break down and had people laugh and cry. The singers were nice. We had a guest singer from our prayer group and he was amazing. Our priest was cool seeing that the guest singer was protestant. The priest was amazing, and was able to put everything in perspective. His message was; When a blossom falls to the floor due to winds, we don’t mourn on what the blossom could have become, i.e. an apple, but we appreciate what it had accomplished, its’ beauty and perfumes in the air. However, he may have put things in perspective for the people but it is still difficult to accept. He also made me and my family put the holly water and incense on the casket. It was difficult but at the same time it gave me the feeling of participation and closure. Then I had Sabrina’s cd play her favourite Italian song Margarita, her 10 year old voice in 1997. Many people were in tears. I think I succeed in making an everlasting impression in people’s minds that in a year from now they will still remember my daughter Sabrina.
Outside the church, we were supposed to thank people one by one, but my wife passed out and we were not able to thank people for their support. We drove in front of our house where the funeral director placed a white and blue rose on our door and then we proceeded to the cemetery located on the mountain, the only mountain, in Montreal, facing the west of Montreal and St Joseph Cathedral. There were many people at the burial and it was hard. My wife’s sister handed over a white dove to my wife to set it free. The first time the dove landed on the shoulders of a person next to my wife. The second time the dove flew a full 400 foot circle and land on the head of the casket next to my wife! So we decided to keep the dove. Was the dove a message from Sabrina to comfort her Mom?
After the burial, we had a beautiful reception at my wife’s uncle’s hall in memory of Sabrina. The priest attended and he mentioned that his church holds 800 people seated. There were people standing because there were no more available seats. He said that he felt the emotions and sincerity in the church. He felt that it was real. This made me feel very comfortable.
I like to thank all of you for the support and kind words, thank-you.
Thursday, September 4, 2003 9:12 AM CDT Donations;
Please make the following donations in memory of Sabrina Di Giandomenico to: Montreal Neurological Insititute, Brain Tumour Research Fund #204092
Extrat of a message for Dr. Rolando Del Maestro, MD,PhD,FRCS(C),FACS,DABNS,Killam Scholar;
The major group carrying out Brain Tumour Research is my laboratory at the Brain Tumour Research Centre. Any cheques or funds should be made out to: the Montreal Neurological Insititute, Brain Tumour Research Fund #204092 and directed to me at the address below.
At the present time our lab is actively involved in understanding the movement (invasion) and growth of both adult and paediatric brain tumours. A significant component of our research involves paediatric tumours because of my long standing interest in this area. We are beginning to uncover, through a number of genetic mechanisms, molecules that increase and decrease cellular invasion. I would think therefore, that monies directed to the Brain Tumour Research Centre at the Montreal Neurological Institute would aid both adults and children.
At the present time one of the residents working in my laboratory is co-supervised by myself and Dr. Farmer. Dr. Farmer is involved in clinical studies while my research is focussed on both basic mechanisms with the hope of finding a cure and methods to improve clinical patient outcome.
I very much appreciate all the effort you are putting into this project and you can rest assured that any funds donated will be used only to advance the understanding and bring the day closer when a cure will be available. All donations to the Montreal Neurological Institiute's Brain Tumour Research Centre will receive a charitable donation receipt.
If you need further information or there are individuals at the Royal Bank who would like to discuss this issue with me please forward this email to them. The Royal Bank has been instrumental in helping to develop the Brain Tumour Research Centre and has been an important partner in brain tumour research.
Best Regards,
Rolando
Monday, July 21, 2003 11:56 AM EST I want to thank everyone who participated at the wakes and mass. I have never seen so many people. Father Mike said that when everyone is seated, the Church holds 800 people. There were people standing with no place to sit. I am glad that most of you found the service beautiful and her song had an impact on you. I wanted everyone to remember her for many years to come and not say, “Ho I think I have been to that funeral”. If anyone wants an mp3 copy of her song, just email me a request at eneldo@galleria.ca. I want to apologize for not staying around to thank everyone in person, but we had to leave due to my wife passing out. I will write more as soon as I have the energy. Thanks again for all the support!
Wednesday, July 16, 2003 7:30 PM EST She passed away into the loving arms of God at 7:30 PM EST. She is now free of this disease and received her new set of wings! Born on July 17, 1986, 12:25 AM (but my wife's water broke at 7:30 PM July 16th) and passed away last night July 16, 2003 at 7:30pm. She left behind me Eneldo, my wife Laura, her twin sister Cynthia and her younger brother Alessandro.
She will be exposed at Magnus Poirier (10300 Pie-IX, Montreal-Nord 322-2250) on July 17th, 7pm to 10 pm, on July 18th between 2pm - 5pm and 7pm - 10pm. Mass held on Saturday, 10am Marie Ausiliatrice on Maurice Duplessis and Alexis Carrel. Burial shall take place at Cote des Neiges (on the mountain).
She went quickly by suprises, I don't think she suffered at all!
Friday, July 4, 2003 12:05 AM CDT Her oxygen level was low at 65, due to fluids in the lung and throat. After a little convincing I finally got a prescription to receive an oxygen concentrator and the scopolamine transdermal patch. It seems like everything is done at the last minute and I have to argue for what I want for my daughter to make her comfortable. As soon as we started the oxygen concentrator, she fell asleep like a baby with no difficulty in breathing.
Sunday, June 22, 2003 10:00 AM EST She had a high fever this morning and difficult in breathing. We called 911 for an ambulance technician. I had to argue with them to drive her to Children’s seeing that they had a file on her. They insisted to drive her to Maisoneuve Hospital because it was closer. So off to Maisoneuve and we were there for 4 hours till she was finally transporter to the Children. The doctors had to remove all the needles and re-install new ones because they were not the same fittings! They treated her with Antibiotics and her fever dropped around 9 p.m. She had an x-ray taken but seeing it was a portable machine, the quality wasn’t great. Dr. Martin at Maisoneuve says it is most probable an infection on the left lung. But Doctor from Palliative Care seems to disagree because her fever dropped to quick for the antibiotic to take affect? Soon thereafter we had a meeting with Doctor from Palliative to discuss the next course of action, basically for the non-treatment to make her go quickly and peacefully. I explained that if her lungs or heart stops due to the tumor I agree, but an infection why not treat it? In my opinion is like not treating a cut on your finger! I think the stress in loosing a love one is so great and I just don’t understand why they have to add tons of more stress by making us feel guilty to keep our daughter alive!! Words like “If you intend to hook her up on machines, well I can’t be your Doctor because I cannot possibly do this to another human being”? I interpreted this as; You are evil and cruel if you do not make her die peacefully so stop treating the infection and just let her go!
I am not God so I really don’t know the right thing to do, but the Doctors are not Gods either! If she gets hurt or an infection can be cured, so the right thing to do is cure it, because if his opinion applies to Sabrina who has a short period to live than why not to those poor sick kids that have only 6 months, why not to those that have 1 year, and then why not to those that have 2 years, so on and so on. I always though euthanasia was illegal; than what do you call making her starve, de-hydration or not treating the infection?
June 3, 2003 12:49 AM CDT At 4 am, I heard her speaking on the baby monitor. I went to her room and she was pointing to the ceiling that there is someone there. Seeing she was in a bad position in bed, I straightened her up and expecting her to yell due to the pain. To my surprise, she did not, she just said "No, she is going to get mad". I asked who, she just kept on pointing to the ceiling?
I'm just sharing my experience, because I'm at a lost if it is an illusion or Angels. I pray it is Angels!
Sunday, June 1, 2003 9:57 PM CDT She made it to the graduation ceremony. She was astounded when they called her name and Mrs. Brooks walked down the aisle to hand over her diploma. She posed for pictures with her friends, but around 6 pm she was exhausted and we drove her home. She is now in a deep sleep and hope everything will go well.
Friday, May 30, 2003 9:50 PM CDT She made it to her prom dance. It was parents with students at the Marriot Chateau Champlain. It was a beautiful evening. Escorted by her X boyfriend, Jason (a brave fellow), she recognized her friends and classmates. Around 10 pm, the excitement took a toll on her and she fell asleep. Drove her home around midnight while her friends and her twin sister went to the cruise after the dinner dance. This event knocked her out and she slept most of Saturday.
May 25, 2003 She is totaly knocked out, does not know if she is coming or going nd she lost bowel movment. Had to start diapers. I increased the steriods to 13mg a day. Towards the evening she got better.
Monday, May 26, 2003 9:13 PM CDT Devastating news! After the MRI, I met Dr. Farmer (neurosurgeon) and his 3 residence, Dr. Mitchel (oncology) Dr. Liben (palliative care) and his assistance Daniel. They explained that comparing the MRI of today with the one of a month and half ago, the tumor is spreading, crossing the midline, covering the walls of the ventricles and creeping down to the brain stem. The spinal cord MRI was unreadable due to Sabrina moving. Basically the message was to stop treatments and to make her comfortable. Now we have to make the difficult choice of home or the hospital.
May 21, 2003 When administrated Hydromorphoe, 3mg due to headaches, it knocked her out completely.
Decadron was reduced to 6mg, but today I decided to increase it to 9 mg seeing she is very confused and non-coherent. 9mg is where she seems to be the most comfortable. Problem with decadron it is wasting her muscles. It is a necessary evil.
May 21, 2003 7:00 AM EST When administrated Hydromorphoe, 3mg due to headaches, it knocked her out completely.
Deadron was reduced to 6mg, but today I decided to up it to 9 mg seeing she is very confused and non-coherent. 9mg is where she seems to be the most comfortable. Problem with decadron it is wasting her muscles. It is a necessary evil.
May 16, 2003 4:00 PM CDT Becoming less mobile, walks 10-15 feet at a time with help.
May 16, 2003 4:00 PM CDT Becoming less mobile, walks 10-15 feet at a time with help.
May 9, 2003 3:56 PM CDT We stopped the duralgesic patch (Fentynal)
April 25, 2003 Seizure in the early hours of the morning. We suspect it due to the dose of decadron was to low (6mg/day)!
She lost her speech and the use of her right arm.
The functional use of the right arm came back 3 days later. And her speech took a week.
April 14, 2003 Sabrina right now is exercising by walking about 100 meters a day so she can go to her prom. She purchased a beautiful peach dress with sparkles.
Her MSN account is princess7772@msn.com
Monday, April 14, 2003 4:38 PM CDT VP-16 restarted
April 10, 2003 MRI shows tumor stable but ventricle slightly large so shunt has to be adjusted to .5
March 13, 2003 Started chemo VP-16 (75mg) for 21days. 7 days off,
March 9, 2003 to April 14, 2003 decadron reduced to 30mg, and today April 14 is at 9mg.
February 27, 2003 MRI shows tumor is stable
February 19, 2003 Agreed in a meeting not to revive her if failure was caused by tumor (pupil popped due to intracranial pressure)
February 18, 2003 Put her on 120mg of Phenobarbital
February 16, 2003 Grand mal seizures
February 12, 2003 stopped dilantin in order to increase blood counts
February 7, 2003 increased decadron back up to 36mg
February 1, 2003 Drained 4cc and reduced decadron to 18mg
January 14, 2003 MRI confirmed growth right through radiation with new tumor spots near the original tumor and a new spot on the spine
December 15, 2002 Platelets transfusion and drained 9cc
December 12, 2002 Received platelets transfusion and the dilantin was increased to 600mg/day. 14cc drained
December 11, 2002 Grand mal seizure, sent to hospital in Intensive Care. 12cc was drained, placed on 32mg of steroids.
December 10. 2002 to January 31st, 2003 Head and spinal radiation, 6000 cGys to head and 4500 cGys to spinal.
December 9, 2002 MRI showed tumor growth (large tail) going into lepto meningeal.
Also showed spread into the spine, 2 large long spots. This is the day the oncolgist basicaly lost hope.
November 14, to Dec 8, 2002 11/14 necrosis drained 28cc, 11/18 necrosis drained 20cc, 11/22 necrosis drained 14cc, 11/25 necrosis drained 13cc. 11/29 necrosis drained 16cc, 12/04 necrosis drained 23cc, 12/08 necrosis drained 16cc
November 11, 2002 Panic attack that house is no longer safe, hears voices.
Also started 1 round of CCNU and Temador.
November 6, 2002 CT-scan showed cyst growth of 4cm,
Surgery to pass small tube to drain cyst.
The liquid was a protein in a liquid form straw color (25cc drained)(necrosis).
September 30th, 2002 Chemo - Temador 240mg per day for 5 days
plus first day CCNU 140mg
Monday, September 23, 2002 11:30 AM EST Grand mal seizure!
Monday, September 16, 2002 9:00 AM EST Surgery, successful, 96% removed, took 10 hours. Was suppose to loose just the top portion of peripheral vision at 1 o’clock, but instead lost whole right side vision. When she looks at you she sees only half of your face.
Thursday, September 12, 2002 9:00 AM EST Programmable shunt installed
Tuesday, September 10, 2002 The nightmare begins; Cat scan shows tumor the size of an orange from left mid brain (Brain Stem) and attached itself to the Thalamus blocking the lateral and vertical ventricles
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