Debbie Fallow

Debbie's Story (by Darlene Fallow - 'Mom')

Debbie was born June 27 1975. She lacked muscle tone, nursed poorly, and gained weight very slowly. At 10 months she was barely able to hold her head up. She was admitted to Sick Kids Hospital and diagnosed with neurofibromatosis. I had been diagnosed with the same genetic disease when I was 18 and had been told it was nothing to worry about, it was only a cosmetic problem. At Sick Kids we learned it could cause multiple problems, affecting any system in the body.

Deb had very delayed physical and mental development, and a curvature of the spine. That was the start of years of physiotherapy. For several months she hated it and would scream during the weekly sessions. Throughout the following years she regularly saw several specialists, (developmental, growth, orthosurgeon, endocrine)

When she was three she was fitted with a back brace. Still the curve got worse. She had the first of over eight back surgeries just before she turned six.

Then, in the mid 80's she started having seizures but they were not diagnosed as seizures for several years. Finally in early 1990 she was diagnosed with at least 4 brain tumors and admitted to hospital for four weeks of tests to see if the one tumor causing the seizures could be removed. Surgery was successful.

In 1993 Deb was again in hospital for the final surgeries for her curvature. She needed two surgeries this time. During the first surgery six discs were removed from her back. She spent ten days in traction on a striker frame, then had the second surgery to fuse her back. She had lost her appetite and over 30% of her weight so she went to Hugh Macmillan Centre for several weeks.

1994 one of the brain tumours bled so she had surgery to remove it.

Early in 1996 Deb needed the third tumour removed. Surgery couldn’t be booked for several weeks so she was admitted to hospital to wait, just in case the doctor could get extra surgery time. By the time Deb was released she had been in hospital over 50 days.

In the fall of 2003 Deb was having a great deal of trouble sitting for any length of time and was content to spend her days lying on the couch. By January 2004 she was eating very poorly, content with a few bites for a meal. She had a lot of pain in her lower back and had trouble walking. When we finally took her to the hospital she had basically stopped eating and again had lost over 30% of her weight. Neurologists and spinal specialists found nothing wrong except that she had no fat stores and very little muscle mass. A G-Tube was surgically placed when attempts to increase her appetite failed. After 6 weeks of intensive physio and occupational therapy in a rehab hospital she came home just in time for camp.

In Sept she started going half days to a day program for special needs young adults. She had trouble climbing the short flight of stairs but by the Christmas break she had gained strength and could manage with some assistance. By Jan. she could no longer do it. As the month went by instead of getting easier it got harder and she needed a lot of assistance. She was also experiencing a lot of lower back pain. Getting her in and out of the car became a two person job. Then one evening she complained that her toe was sore.

She started to lose the use of her left leg. It was so frustrating. Everyone knew that there was obviously something wrong but the doctors could find nothing. Within two weeks we were in her neurologist’s office and 5 days later she was at Toronto General for a CT myelogram. Thanks to modern computers neurologists at Toronto Western were able see them as soon as they were done. They wanted Deb to come immediately. A large mass had been found on her lower spinal cord. Surgery was done two days later.

After surgery she had trouble breathing. A trach was put in after several failed attempts to remove the ventilator. She was still in ICU when we were told that the tumour was a very aggressive cancer, usually found in the brain, always terminal. It had most likely been there the previous year but the MRI had not picked it up. We didn’t tell Deb about the cancer yet but asked her if she would like the elders to come and pray and annoint her with oil. She immediately nodded yes. As the elders circled her bed she fixed her eyes on each on of them and tears started to roll down her checks. She took the hand of one of them and closed her eyes as they started to pray. I thought she had fallen asleep but one of the elders later said she wasn’t sleeping, she had a death grip on his hand the whole time.

Five or six weeks later she was finally transferred to a room. We still had not told her about the cancer. I was waiting for the day when the trach would be removed, or the day when she could finally talk with the trach. That day never arrived. A scope of the throat showed that one of her vocal cords was permanently damaged.

One Sunday we had a guest speaker at our church. He ended his message by saying that we may loss everything in this life. He linked two fingers together and reminded us that no matter what the other loses…Nothing and No one can ever take away our relationship to God. We had already decided to tell Deb about the cancer that afternoon. She appeared shocked. When I told her what the speaker had said she broke into a big smile and nodded her head. Angela was crying and told her how sorry she was. Deb, in her typical way, opened her arms, surrounded Angela in a huge embrace and proceeded to pat her on the back.

Several weeks went by. One day the doctor came in to tell us that he would start the paperwork to transfer her to a chronic care facility. We wanted her home. Funny, a year earlier we were waiting for the day when she would get a placement in a Christian Horizons home… now we wanted to have her close as long as possible.

We arrived home the middle of May and started gathering all the necessary supplies to last the summer at camp. We took a car load to the trailer ahead of time. We also had to double check with Medi Gas to be sure her oxygen would be there when we arrived. It’s good I checked as they had received the wrong information and would have delivered it a few days too late.

The entire family thought that we were doing a dangerous thing. We were too far from hospitals. What if something went wrong? Despite this, my younger brother, who is not a Christian, offered to help us get up here.

During the Saturday BBQ on the first day of camp many people came to see Deb and visit with her. She beamed from ear to ear. I wish we had pictures of that joyful face. My brother sat there in astonishment. He had seen Deb just a few days earlier at her birthday party. She had slept through most of it. Her few smiles could barely be called smiles and had been very brief. When my brother saw the joy that shone on her face he said he couldn't believe it. He was going home to tell the whole family that we had made the right choice. This was where Deb belonged.

So, our summer started. Through the generosity of Fair Havens we were able to stay in accommodations for the first two weeks. Getting Deb in and out of bed was a real strain on our backs so young maintenance staff were assigned to help us. What a blessing they were. They would use a sheet to lift Deb to her wheelchair. Some days it went well, They’d get the thumbs up sign those times, some days even more than two as she tried to indicate a really good lift. Other days she was in a lot of pain and the tears would come to her eyes. One bad day she pointed both her thumbs and some of her fingers down. They sat and held her hands afterwards, waiting for her to be OK again. We praised God that He provided such compassionate young men to minister to her.

Before the end of our second week we were invited to spend the rest of the summer in Middleton’s add-a room. What a blessing. We had easy wheelchair access, her hospital bed and an air conditioned environment. We were quickly learning that God is a master when it comes to looking after the details.

I had wanted to get a machine that measures oxygen in the blood. Normally they rent for about $100 a month. There was no way we could afford that. The Medigas therapist said that they were very hard to come by so this became a prayer request. Very soon she found one that we could borrow for the summer at no cost. On at least two occasions the portable oxygen tanks failed and it was that machine that alerted us Deb was in trouble.

Five nights a week Deb had nursing care. We would get a good nights sleep in our own trailer. One night I got a call on the walkie talkie from the nurse. Debs lips were blue. One of the two oxygen tanks had run dry. We quickly connected another full tank but it didn’t help. She would open her eyes when called and look at me but they would not stay open. I got out the “bag” to pump oxygen into her lungs and immediately the levels went back to normal. They fell as soon as I stopped. We tried several times. Melody asked if she should call an ambulance. We were relatively certain she did not want to go on a ventilator so we said no. The third or fourth time she asked I agreed. I had been praying the whole time, begging God to let her live. I just could not face the guilt of having her die this way. She was in trouble because we had not checked the oxygen tank. I thought that maybe the ambulance attendance could try something we had not done yet. It had now been more than 20 minutes.

The ambulance attendant who came was a Christian. He felt that she was dying. Since we did not want her connected to a ventilator we decided to stay where we were. He offered to pray with us and said that they could stay as long as needed. We were still bagging her, trying to keep her oxygen levels up, hoping that she would respond. Once when I laid the bag down the attendant mentioned that her heart rate was decreasing and told us that soon she would go into cardiac arrest because her heart was not getting enough oxygen. Immediately I grabbed the bag and started breathing for her again. I was still telling God over and over “not this way, Please not this way”. Melody and the ambulance attendant left to get three friends to be with us. They arrived within minutes. Meanwhile I left to call Deb’s sister to let her know Deb was dying and Terry stayed to continue bagging Deb. When I got back I called Debs name again. It had now been about 40 minutes. This time she opened her eyes and stayed focused on me. I told her that one of her oxygen tanks had run dry and she had not been breathing very well, that we had been breathing for her. I told her that I didn’t even know if she wanted me to do this. We told her how much we loved her and that we would miss her but if she had to go home with Jesus now it was OK. I also told her that if she still wanted to live than she had to breath because I couldn’t keep bagging her forever. I laid the bag down and we waited for the oxygen levels to start going down again. They didn’t! The levels stayed up. The ambulance attendant couldn’t believe it. He later mentioned to our friend that this sort of things doesn’t usually turn out this way.

During the fall Deb stayed relatively stable. We stayed as active as possible, going to Tim Horton’s, visiting Grandma at the nursing home, going to church.

We had been told that the machine Medigas had loaned us HAD to be returned before we came home. That was before Deb’s near death experience. Medigas then told us to take the machine home with us. Early one evening near the end of Oct the alarm went off, indicating her oxygen levels were too low. It didn’t matter what we did, the machine continued to alarm all evening. Finally by midnight she was taken by ambulance to the hospital. The next morning we were advised she needed a ventilator immediately. We were very reluctantly given 10 minutes to decide. Deb was unresponsive so all we could do was ask God for wisdom and we made the reluctant decision to let them connect her to the ventilator. X-rays not only confirmed that she had pneumonia, they also showed that her left lung had collapsed and was consolidated. Two days later we were told that she would never survive off the ventilator. The decision was made to treat the pneumonia for the full 14 days before turning it off.

It was announced in church that Deb was dying and visitors would be limited to family only after Tues evening. People were invited to come and share memories with Deb. I was not prepared for the number of people who came. For two days there was a steady stream of visitors, all of them wanting to have a chance to tell her and us how much she had meant to them. I had no idea that she was that well loved or that her ministry to others had been so broad. What a beautiful time of affirmation this was for her. So many people save these comments for the funeral...a little too late.

Deb had the privilege of living her last days knowing she was loved by many.

Plans had been made to turn the ventilator off on Wednesday. We realized we had not asked Deb what she wanted. We had struggled with her for 8 months, trying to get her to indicate "yes" by closing her eyes and holding them shut for a moment so that we would know for sure it was yes. She preferred to give a quick blink. She was very alert as Ang explained to her what the doctors had told us. If they turned off the ventilator she would die within 24 hours. Ang then asked if she wanted it turned off and she immediately shut her eyes very tightly and kept them shut for a few seconds. It was the most definitive yes she had given us since surgery.

It was shut off around 1 pm. The next day she was still breathing on her own so she was moved to a semi private room. The other bed was removed so that we could have privacy. They still expected her to die soon. The second day, Fri. we started plans to take her home. Monday morning home care was in to finalize plans to take her home the next day. Within a few hours she started having problems breathing. We spent the day taking turns resting in bed with her as her oxygen levels continued to decline. Ang was called to come. While waiting for her to arrive Deb’s oxygen levels dropped very low. I began to panic, thinking that Ang would not make it in time. Deb had been sleeping for most of the evening. I told her I thought the angels would be coming for her soon; she didn’t respond. I told her if she couldn’t wait it was ok; Still she didn’t respond. Then I told her that she should just keep her eyes shut, ignore the angels if they came for her too soon because Ang was on her way. The very second I mentioned Angela’s name Debs eyes opened wide and she looked directly at me, then went back to sleep. Ang arrived around 10 and was able to cuddle and talk to her. The nurses brought in a second cot and we spent the night taking turns laying with her. We were wakened just before six by Terry and were by her side as she took her final breaths. We had planned to bring her home that day. God had other plans.

For months I had been praying that God would heal the cancer as well as all the other problems she had in her body. I always added “and Lord have mercy.” He answered all those prayers that day.

Through it all God was our strength. I find it hard to comprehend the overwhelming sense of his presence that totally surrounded us. He had taught me to build on the foundation of salvation, nurturing me through a time of emotional healing and learning to trust Him.

Three Thoughts that Typify Deb’s Faith

Deb had prayed for healing and had been anointed with oil several times over the years and sometimes wondered why God had not healed her. In 1995 she went to Mission Fest for a weekend.  She came home from that event with the full confidence that God had made her the way she was for a reason and that was "OK". That was enough for her.

(While in hospital after cancer surgery)

One Sunday we had a guest speaker at our church. He ended his message by saying that we may loss everything in this life. He linked two fingers together and reminded us that no matter what the other loses...Nothing and No one can ever take away our relationship to God. We had already decided to tell Deb about the cancer that afternoon. She appeared shocked. When I told her what the speaker had said she broke into a big smile and nodded her head. Angela was crying and told her how sorry she was. Deb, in her typical way, opened her arms, surrounded Angela in a huge embrace and proceeded to pat her on the back.

Plans had been made to turn the ventilator off on Wednesday. We realized we had not asked Deb what she wanted. We had struggled with her for 8 months, trying to get her to indicate "yes" by closing her eyes and holding them shut for a moment so that we would know for sure it was yes. She preferred to give a quick blink. She was very alert as Ang explained to her what the doctors had told us.( she had not been alert much while in hospital this time) If they turned off the ventilator she would die within 24 hours. Ang then asked if she wanted it turned off and she immediately shut her eyes very tightly and kept them shut for a few seconds. It was the most definitive yes she had given us since surgery.  I'm sure she knew where she was going!

What was Deb Like???

Deb had a hard time keeping secrets. Once when she was very young she and her sister were left to clean their very messy bedroom. They called me a short while later... the room was almost spotless and I was very impressed. When I asked how they did it so quickly Deb smiled broadly and told me they put everything under the bed...... not something her sister intended me to know!

When she was in Sick Kids for a back surgery she met Joe Thiesman and had her picture taken playing pool with him. It was published in a Toronto newspaper.

After her first brain surgery she had the opportunity to apply to the Sunshine Foundation to have a wish granted. She wanted to go to Disney World. She got her wish and that was a highlight.... 5 nights and 4 days for the entire family.

Deb had a paper route for several years. It was a small route in three apartment buildings close to home. For many years after she quit former customers would say hi to us when we crossed paths. They all remembered her well.

She was in a modified class in school from grade 2. In high school she had several co-op placements but had very little energy to do well in them. She loved little kids so she was very excited to get a placement in a day care. One day she laid down beside a small child to rub his back so he would go to sleep for his nap. I don't think the supervisor was very impressed when she fell asleep on the floor beside him!

She had a placement in Zellers stocking shelves. On her first day she came home after school and went straight to bed.. she was too tired to even eat supper!

She really wanted to be able to babysit but few considered her to be able. However one of her sisters school friends hired her several times and Deb was thrilled. I think it made her feel very grown up to know that she could do this job. One evening she was babysitting this child with her girlfriend when she had a seizure. That put an end to babysitting by herself.

As a young adult she was very generous with her money and had sponsored two foster children through World Vision.

We Remember You Debbie!