Letter: Sindi Update

I hope everyone had a happy and safe Easter weekend. It's day 13 post transplant. The good news is I got my appetite back today. I've been sending my sister out all morning to the kitchen looking for things I can eat. I had a bit of orange, some apple juice, ginger ale and a bit of cranberry juice. You won't believe how good it felt going down into that empty pit of my poor stomach. Thank God!

The last week again was a rough one, but as I told the Premier when he called to regularly check in on me, our minds are a beautiful thing. I've already forgotten the week before so I know all of this week with its ugly memories will also be placed in a big steel trap, somewhere so deep in the recesses of my brain that, even if I wanted to, I may never be able to retrieve them.

This past week saw some problems with my kidneys which resulted in a continuous dopamine infusion to help keep my kidneys perfused. The fevers, which I talk about to my body all the time, did not abate so more major IV antibiotics and drugs were started. I developed the sore and painful mouth and throat from the methotrexate, given post-transplant. Up went a continuous infusion of pain medication called PCA (patient controlled analgesic) meaning I can give myself extra booster shots when I think I need them. They can fix anything here, as one of my bone marrow transplant mentors reminds me.

The nausea has been an incredible challenge for me, but I work with my poor old stomach and bowels every night and it is becoming less of a challenge. The fevers have also reduced with the addition of IV antibiotics and that makes me much more comfortable.

I've been highly dependent on blood and blood products on a daily basis. Thanks so much to all of you who are taking up the challenge to keep our blood bank stores with enough life-saving blood for people like me. With the weather getting good, I know this is the time when appointments at Canadian Blood Services centers get cancelled by as much as 40 to 50 percent a day. That scares people like me because I am now at the mercy of all the wonderful anonymous donors. Please call 1-888-2-DONATE to make an appointment or to enquire about the unrelated bone marrow donor registry. You can also get information by going to my web site at www.sindihawkinsmla.bc.ca. Thank you.

This is a critical time for me. At this point all my marrow has been killed and my body made welcome for my sister, Seema's marrow. I am on continuous antirejection drugs and we're waiting any day to see if there will be a sign indicating to us that her marrow has taken to my body. That sign would be a steady increase in my blood counts. So far we haven't seen that, thus the need for me to be supported by blood donations until that happens. Seema had a dream and said in her dream the magic date was the 15th. I'll take it. We'll see.

I continue to have the love and support of a caring family at my bedside. My parents have come and gone, as have my sisters and extended family. Just want to share a bit of family experience before I leave you this week. My eldest sister, Rupie, says I should call these the "Having the Family Too Close and Personal" stories. I'll just call them family follies.

The idea to share them came from Rupie herself. They got me up in a big chair and wrapped me in blankets so I could enjoy the view. When getting me up to the bathroom, Rupie grabbed the sheets on my chest to pull them off. I screamed and she looked absolutely horrified. She had grabbed my chest line and given it a good yank. I asked the nurse to check my line as she went tearing into the visitor lounge to tell Moni that I was now mad at her and wasn't talking to her. Hardly. Anytime you can get her rattled is worth it. She prides herself on her organization and "handling of any situation" skills. (She's the first one in the family I called when I was told I had a serious blood disorder). My line was fine and I'll never forget the look on her face or how fast she dropped the sheets when I screamed!

My lifesaver, Seema, popped in for an hour while I was fevered to help cool sponge me. I kept her busy asking for ice chips, ice water, etc. Moni asked Seema if she was okay and was assured she could manage. After 45 minutes I needed to see a nurse. Seema looked for the nurses' call button. After showing me several options, as I was getting more anxious, she pressed one and immediately gave me an extra dose of my pain medication. She got the nurse on the call button beside that one and then went straight to the visitor lounge to tell Moni how she had accidentally given me more pain medication when I asked her to press my nurse call light. We laughed.

My brother, Lucky, hasn't been here for awhile, but near the end of my last stay, as I was being taken off IV antibiotic and switched to oral, he must have thought I was complaining too much about the size of the pill I had to swallow. I would look at the pills and ask the nurses if they would break them in half for me. One morning, I looked in my med cup full of pills and was surprised to see amongst them all - two very large square shaped ones I hadn't seen before. My heart sank as I rang for a nurse to ask what these pills were. Lucky stopped me, took them out and said "just wanted you to see it could be worse. Now quit complaining!" he said as he popped the gum in his mouth.

Pamela from Toronto emailed me quickly before flying off to their friends "the wedding of the year" in Jamaica. She said "Be good. Be strong. We're all behind you. And just remember, in six months we're all going to be slapping you for putting us through this!" Something to look forward to...

During my first stay, my family took turns sleeping over through the nights. Moni pulled a lot of night shifts. There were nights where I would shake with fevers, shake with tears or just fear. She'd come and lie in bed with me. The technicians and nurses come at 5:30 in the mornings to collect blood. I would plead with her and say "stick your arm out - maybe they'll think it's all a mistake and let me go home!" She did one morning. She pulled back quickly and apologized. No one was amused except for the two of us lying, giggling away like a couple of kids who thought they almost got away with a big one!

Well, more stories to come later. Must say goodbye for now. My date with Memorial Cup and Kelowna Rockets is getting more and more attainable! Please keep me in your prayers.

-Sindi Hawkins

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