Andrew Featured in Campbell’s Newsletter

A newsletter was circulated at Campbell’s sharing Andrew’s important role in the Princess Margaret Hospital Foundation’s Wings of Hope campaign. This campaign is responsible for a large portion of the $60 million raised in support of cancer research at PMHF each year.

The newsletter reads, “The reason we chose the Valades for the 2008 campaign is simple,” said Amelda Fitzpatrick, Development Coordinator, Leadership Giving at the Princess Margaret Hospital Foundation. “Here is a family that took their grief and turned it into a vehicle to help others, to raise funds, to educate, and to inspire people. They are truly keeping Andrew’s spirit alive.”

Read the full newsletter here.

Andrew’s Fight Against Brain Cancer Continues

Andrew’s story is featured in Princess Margaret Hospital Foundation’s Dove Appeal Campaign. His story touched more than 200,000 families around the country and moved many more to support the fight against cancer.

The Dove Appeal Campaign is one of The Princess Margaret’s longest standing and most successful appeals. The organizers reported that more doves than ever before soared in the atrium of The Princess Margaret giving hope to patients, staff and families alike. Learn more at the Dove Appeal Campaign.

Obituary: Valade, Andrew Julian Conner

March 22, 2008.

It is with great sadness that we announce the passing of our son and brother on March 21st, 2008. Andrew is remembered with love and fond memories by his family; parents Dan and Jacqueline, siblings; Elisa, David, and Julia and girlfriend, Jasna DeLuce. Survived by proud grandparents, Julian and Lynne Conner. Predeceased by grandparents, Rheal and Lucille Valade. Andrew will be greatly missed by his aunts, uncles, cousins, and many close friends. Friends and family may visit the Jerrett Funeral Home 6191 Yonge St. (2 lights south of Steeles) on Tuesday March 25th from 2-4 & 7-9 p.m. A funeral mass will be celebrated at Blessed Trinity Church, 3220 Bayview Ave. (North of Finch) on Wednesday, March 26th 2008 at 10 a.m. Internment York Cemetery. In lieu of flowers, please make donations in Andrew’s memory through www.andrewinspires.com.

“Death can leave a heartache no one can heal.

Love leaves a memory no one can steal”

>> Send Your Support to Andrew’s family

March 20, 2008.

Andrew hasn’t been having a very good week. He had a seizure in the middle of the night on Sunday. He was ok, it didn’t seem to be generalized all over, but he was convulsing on his right side. Two nights ago he started having breathing difficulties and seemed to be quite uncomfortable, but it settled down with some T3s and the doctor came and said it may have just been mucus making it difficult to breathe and its difficult for him to clear his throat. Last night he started having the same problem and although the T3s seemed to help they didnt completely diminish the problem. He had difficulty breathing all night and all this morning. He had tylenol again this morning, and it seems to make him at least a little more comfortable and relaxed but he’s still not doing great. Anyway, that’s the latest, we’re hoping he’s not in too much discomfort. His sister, his mom and I are gonna hang out with him all day and keep him company with a little chili peppers and maybe some pearl jamm?

March 5, 2008.

No major changes to report. Andrew’s breathing has started to slow, but the rest of his vitals seem stable. We’re still welcoming visitors from friends of his, but are a little more restrictive about visitors other than people that were/are his friends. It really could be any day now, so if you’ve been meaning to come but have been putting it off you should really think about giving us a call to arrange a day to see him.

February 29, 2008.

Things aren’t looking so good these days. Not much has changed really but the doctor thinks this all may come to an end in a matter of days (but it could be weeks who knows its nothing more than a guess at this point). In any case, the end is near. If you’re able to we would appreciate if you gathered your pictures of Andrew and either scan them or make copies. When the time comes its possible we may invite his friends over to help put some collages together, but obviously thats planning a little too far ahead and nothings for sure.

February 26, 2008.

Right now, Andrew is bed-ridden, and too weak to transfer to the wheelchair unless it is necessary. He is unable to speak 99% of the time, and the 1% he does speak comes out barely as a whisper. This week he is having difficulty swallowing, and it is becoming more difficult to give him his medicine. He may have to have an IV put in next week so that he can get his medication in him. We’re watching closely how he’s swallowing because on the one hand if he is swallowing we would like to feed him, but if he can’t swallow the doctors do not want us to feed him. If his esophagus has weakened, his stomach muscles and colon probably have to, and feeding him could be very dangerous (it could lead to surgery to clear things out), and very uncomfortable for Andrew (could you imagine food piling up in your stomach with nowhere to go?!). It’s very difficult for us to make these types of decisions, but we are doing the best we can. I am hoping that his difficulty swallowing last week can be improved with a higher dose of medication, or was just a bad week, but we will be able to tell if he is still digesting or not. This is a long story, but still has been condensed to leave out all the traumas and hardships and doctors that Andrew has dealt with. As I’m sure you can now see, brain cancer can affect all parts of your body, and I think its a real shame that there is so little awareness and support out there (in terms of fundraising) for such a terrible disease.

January 2008.

Since December, Andrew has continued with the DCA, which we’re not entirely sure is helping with the tumours, but it seems to lessen his symptoms in the same way the anti-inflammatories do, which is worth taking for the increase in quality of life. He also began natural treatment, which is surrounded with all sorts of controversy about how valid it is and how there is a lack of supportive evidence. Unfortunately, as far as western medicine is concerned, we’ve tried and failed all options. So we are left to turn to alternative treatment for an answer. Unfortunately, Andrew is completed exhausted from all of this and finds it difficult to even take his herbs. We came to the conclusion that I will only give him as much as he’s willing to have in a day (which ends up being about a quarter of what he’s supposed to).

December 2007.

Andrew began radiation the week before Christmas. At first it was more exhausting travelling than anything else (the treatment only lasted about 15 minutes), but by the end of it he was losing his hair and vomiting from radiation sickness. At one point he was having difficulty speaking/swallowing/talking, but by increasing his dose of anti-inflammatory this was compensated for. Andrew wanted to stop after 3 weeks, so we asked for another MRI. The MRI confirmed that although nothing had grown (or shrunk), the inflammation was out of control. We decided that the radiation was doing more harm than good, and Andrew had had enough, so we stopped after completing 15/25 sessions.

November 2007.

We decided to continue for another round, with a few demands of our own. We had medications prescribed by different doctors who weren’t all in agreement (palliative vs. oncologist) about what was the best anti-nausea. We ONLY wanted one doctor to prescribe meds from then on. We made it clear that we wanted to be able to be in touch during the month if there were any more problems. We wanted to have a scan at the end of this round to make a better decision whether or not to continue. The doctor had also forgotten to give Andrew an anti-inflammatory with the chemo, so this time he had it (it made a HUGE difference. He still had nausea during the 5 days, but not the entire month like the first time). At the end of the second round, Andrew had another MRI. Unfortunately the tumours had grown and the oncologist said not to do chemo anymore. He brought in a radiologist to meet with us.

It was decided that Andrew should try whole brain radiation. Once again, it would not cure him, but they were confident that it may extend his life a little. Unlike chemo we were not to expect any immediate side effects other than hair loss and skin irritation. The downside was it meant renting a wheelchair taxi 5 days a week to go to the hospital for treatment, up to 25 sessions (including over the holidays). Before he began, Andrew was to have surgery. The pressure from the tumours was blocking the fluid in his ventricles (open space in the brain) from draining naturally, so he needed a shunt put in to drain the fluid. This required a tube fed up under his skin from his abs to his head, that way the fluid would drain down to his abs where it would be easily absorbed. At this time we also started Andrew on a new experimental drug called DCA. He was to take it 2 weeks then break for 1, but it wasn’t expected to kick in for about 6 weeks. While waiting at the hospital for days (and Andrew not being allowed to eat till the evening just in case he were to have surgery) waiting for an opening for surgery, more complications arose. The radiologist wanted clear cut evidence that Andrew had cancer for sure, because if she were to radiate and it was an inflammation problem she would only make him worse. We had to make the decision about Andrew having another biopsy right after his shunt surgery, but we were worried because he was so weak already, and what if they didn’t find anything again this time? Luckily, the surgeon removed a sample of the fluid when he put the shunt in, but unfortunately malignancies were confirmed after analysis of the fluid.

October 2, 2007.

We went to Princess Margaret to meet the oncologist. We were totally expecting more tests to be done. If the biopsy came back negative from cancer, and there were no changes between the latest scans, how could they come to a different conclusion without doing more tests? Well I was wrong, the doctor flat out said that based on the worsening of the symptoms that Andrew had gliomatosis cerebri (read more about this illness and why it is so difficult to treat and diagnose). Andrew was started on Temolzolomide (a type of chemo) that very night.

The chemo was to be taken for 5 days (at home thankfully) then 21 days off. I won’t go into details about what it was like for Andrew and for those of us up all night with him, but it was gruesome and violent. He developed a very bad thrush infection afterwards to the point where he didn’t eat more than a couple spoonfuls of yogurt a day for 10 days, and was only getting water by ice chips. It hurt him to swallow, cough, hiccup or anything else. He was put on soooo many medications that I literally had to write out a time schedule (every single morning, because he would wake up at different times every day) for his medications to make sure we had enough time in the day to fit everything in (some of them had to be four hours apart between doses). I also had to make sure that he didn’t have too many things to take at one time because he would vomit. I also had to mix up when he would take liquid medications and pills because too many liquids in a row would also make him vomit. We were sorely unprepared for this, and the next appointment with the Oncologist on Halloween, we made very clear to him we were not happy about that.

September 5, 2007.

He was admitted to Toronto Rehab Center. It was like an old folks home. Andrew must have been the youngest by at least 20 years. Most people there had suffered from strokes. He stuck it out as much as he could, but sometimes he would be too nauseated to participate in the therapy. They were able to get a second neurologist from Toronto Western to come take a look at him. He did a complete neurological assessment, and it was then that I noticed how poor Andrew’s vision was. He had complained about blurry/doubled vision, but we noticed that with his left eye he would only see letters on the right side of the card, and ignored everything to the left (he wasn’t even aware that he couldn’t see it). The doctor wanted to meet with his mother within a day or two of this assessment, and it was clear that he had something important to say. He told us that he suspected that Andrew had gliomatosis cerebri, a very rare form of brain tumour. So an appointment was booked with an oncologist for Oct. 2nd, and we took Andrew home.

July-August 2007.

Andrew’s symptoms continued to worsen over the summer months. He now needed assistance to walk, even with the cane, and somebody to help him stand while he used the bathroom so he wouldn’t fall and crack his head. He hit his head so hard on the driveway on my birthday in August that he passed out when he got back in the house and had to be taken to the emergency room. Somebody had suggested to Mrs. Valade to take Andrew for an assessment at a neuro-rehabilitation center for rehab instead of simply sports therapy. We went in early August, and they went through Andrew’s entire history with us. They agreed with us that something wasn’t right, and were appalled that his doctor refused to refer us to another neurologist for a second opinion (he thought we were just being hysterical). They accepted him for their outpatient program, with an intense routine of physiotherapy, speech therapy (he was beginning to slur words), occupational therapy, and social work. The first day we went, they realized how much difficulty Andrew was having and that there was no way for him to get to appointments without assistance. They decided he needed to be in an inpatient program, and that from then on he should be in a wheelchair for his own safety. They came to the house for a home safety assessment, and provided us with things such as a shower bench, and raised toilet seats. We also moved his room upstairs from the basement, because it was now too dangerous for him to be going up and down stairs every day.

June 2007.

By the time the appointment in June came, Andrew had already worsened. He was now using a cane all the time, even in the house to get to the bathroom. His balance was completely off, and he had had some really bad falls because of it. He also developed extreme vertigo in the mornings, to the point where he would fall when trying to sit up, and would be nauseated to the point of vomiting. The doctor assured us that nothing had changed on the MRI and that we just had to give things some time and he would see us again in a few months.

May 2007.

It took nearly a month to get the results. When we finally did, we were told “the good news is, its not cancer”. He was diagnosed with toxic metabolic encephalopathy, which is just a fancy way of saying he had some sort of toxic exposure that caused swelling in his brain. The doc said that it would either stabilize or get better, but that it would not get worse. We asked about rehabilitation, and he said any old sports therapy clinic would do. We kept our appointment in June with the neurologist.

Early April, 2007.

Andrew’s walking is noticeably worsened. He reluctantly borrowed a cane from his grandfather to take with him when walking for long distances (such as travelling to go downtown). He was also beginning to have a sense of urgency to use the bathroom often. His left hand was also noticeably weaker, and it was at this time that Andrew decided he better record his latest guitar songs while he still could. His mother decided with such a rapid decline that we did not have time to wait until June for another appointment, so we took him to the emergency room. After a 24 hour wait and preparation for possible brain surgery, Andrew was able to talk to the neurosurgeon. He said it was either an inflammation (caused by any number of things) or a growth. Our options were to do a biopsy then and there, or take anti-inflammatories for a few days to see if his symptoms improved. Andrew tried the medications, but they did not work, so on April 19th, 2007, Andrew was scheduled to have a biopsy.

March 3, 2007.

We saw a neurologist at Toronto Western. At that time, Andrew’s mother was beginning to notice something funny about his walking, but it was so subtle at this time that nobody else could be sure if there was a noticeable difference or not. At that time, Andrew was also beginning to notice that he would make more mistakes in his fretting while playing his guitar, something we attributed to possible after effects of the seizure. The neurologist had a second MRI done a week before this appointment. He confirmed that there were abnormalities there, but was not certain what he was looking at. He said at that point of time it could be a number of things, and we were to come back in 3 months time (in mid-June) to do another MRI and see how things had changed. He also was able to manage Andrew’s seizures better with a different medication.

February 17, 2007.

Andrew had a second grand mal seizure in Tennessee (on his way to Florida). It was attributed to not finding the correct dose or the best medication for him at that time. We had to continue to wait to see the neurologist, we couldn’t know anything until then.

January 19, 2007.

Andrew had his MRI. The doctor was able to confirm that there was something like a thin film, or swelling, but that it was very vague and difficult to say what it could be. He was then referred to a neurosurgeon (who would not be available until March 3rd). Until then it was a waiting game.

January 17, 2007.

Andrew had his first ever grand mal seizure. Before that time, he had been having focal seizures for several months (possibly even up to a year), but he did not know what they were and attributed them to other factors in his environment. Leading up to the grand mal seizure the focal seizures became more frequent and more intense. Unfortunately he did not get to a doctor in time before the grand mal. They took 2 CT scans that day. The doctor said that they saw some sort of abnormality and that they would do an MRI in 2 days to have a better look at it.

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