My Last Blog

Today is a very sad day. Lex lost her battle with Leukemia and passed away on Wed Dec. 29 at 5:15am Israel time. She died from complications from Leukemia not the Leukemia itself as she was still in solid remission, her liver just could not handle the 6 1/2 years of poisonous drugs she needed to take to survive this horrid, relentless disease, and so, it stopped working. Thankfully she fell into a deep sleep without knowing what was happening and simply never woke-up. Rick, Danielle, Jonathan and I held a bedside vigil for 36 hours only leaving for a hour to go home to shower and change our clothes she was never alone. She was not in any pain and for the most part appeared relaxed, calm, peaceful. Prof Slavin said he had never seen a liver deteriorate so quickly there was no time to do anything and actually in the end there was nothing that could have been done, of all the organs in the body the liver is the most difficult to repair, sometimes there can be a miracle and the liver can begin to regenerate but this was not the case for Lex. The last 2 weeks of her life were not easy, many of you asked why I hadn't posted a blog for a while, well, now you know the reason, I had nothing to post, Lex was in the hospital receiving treatment for several infections both viral and bacterial in the hopes that they could get them under control. Then her liver became enlarged and so the treatment switched to what was perceived the biggest threat to her life and all medications were removed to try to give her liver a rest.

At the moment we are all so sad and I wonder how can you recover from losing a child, a sister, a grand daughter, a niece, a cousin, a friend....or even, do you ever recover? Even though Lex was not conscious I talked with her and made a promise that we would all live our lives, well, somehow. But she leaves a massive hole and I really don't know how we will be able to go on without her.

She was loved by so many, truely, I have never known anyone who garnered so much love. Lex had this capacity to draw people to her and everyone who met her instantly became her friend. But some of her friends are truely special Jen, Tal and their baby Seth, Arielle, Seth, Hayley, Lisa, Elise and of course Mo who spent 6 weeks living with us, cooking for us and loving Lex in his very special way. You all flew in at great expense to be with Lex and I, and it was appreciated and wonderful. Donna having you in Tel Aviv with us was like a little bit of home and Karen you're support during this time was unwavering, your couldn't do enough for her and Lex adored you. I am so glad that all of you were able to spend time with Lex, I hoped that your visits would not be the last time you would ever see her, but I can't impress on you enough how much she loved you and how special you made her feel.

I asked Lex last week if she was still glad that we came to Israel and she answered me that she had no regrets, not one. She was only homesick for her dog Dodger. She thought of this experience as an adventure and even though she spent 7 weeks in hospital and the rest as an outpatient she loved living in Tel Aviv in our apartment, shopping for groceries, exploring local restaruants and making new friends and I loved having this time with her too. Where Toronto only offered her death, Israel offered her life and so these last 3 months were filled with smiles, laughter and hope always hope. Because it has ended this way doesn't erase the fact that the last 3 months of Alexis's life were pretty incredible and she knew it and I knew it too.

Rick, Dani and Jonathan how you all managed to fly in on this particular week amazes me, it is truely besheret that you are here. And I am so grateful that both Lex and I were never alone, Lex was surrounded by the love of her family when she passed and I know she knew we were all there. Jonathan you unselfishly stayed by our sides throughout, holding our hands bringing us tea offering support never intrusive just gentle and thoughtful.

So now with heavy hearts we have begun the process of leaving Israel, packing up our home, packing up Lex's belongings will be among the most difficult things I have ever done, her personality resonates and she is everywhere, tears are falling on my keyboard as I type this how can there be so many tears


****For those of you reading my blogs, I have decided to continue writing, so this in the end is not my last blog. Instead I see it as my last blog in Israel. My blog will continue to be written after I return home to Toronto.****

Waging War on the Flying Monkeys

Things can change quickly one minute Lex is coping with all her issues and the next....

The wicked witch is dead, but the 'flying monkeys' are reaping havoc on Dorothy. Alexis had another biopsy last Sunday because her blood work was concerning, all her counts were dropping reminiscent of last September. So, a biopsy was done to rule out Leukemia, the results showed that Lex is in solid remission and by removing the elephant from the room we could now concentrate on the other reasons for the dropping blood levels. It's been an intense week, Lex has infections that are affecting her overall health. The 'flying monkeys' have been trying to damage her graft and stress her body, the UTI is still present, but last Sunday she also developed a bacterial infection in her blood, she became feverish and her blood pressure dropped dangerously low. We went to war, infusing Lex with the equivalent of 15 litres of fluids, her legs are swollen and uncomfortable and Lex is exhausted because she has not had a real sleep of more that 30 minutes in days. This bacterial infection brought her blood counts back to early transplant levels and she became neutropenic a condition that develops when you have no immune system, she started wearing a mask again and Dani and I masked when we were with her. Antibiotics were given to cure the bacterial infection and antivirals to fight the UTI and then we waited, thankfully today 6 days later her blood work revealed an improvement slight but definite and the masks have come off, she is no longer neutropenic, now we can focus on getting Lex strong and healthy so she and her sister can play in the Emerald city a little!

Relaxing, Grocery Shopping, Toaster Ovens and Weather

The last couple of days have been the most peaceful we've had in a while. We've been running to the clinic daily now for almost 3 weeks, even on Shabbat when it's closed it's been open for Lex. Lex requires constant hydration for the UTI and so along with drinking several litres of water a day they are also giving her fluids through her I.V. There has been very little change regarding this infection but with the doctors help Lex has learned how to manage the pain with a cocktail of drugs. The reward for this was a 2 day vacation from the clinic this week - we have all the doctors personal cell phone numbers loaded into our phones and know that we can call them in an emergency and, they have proven to us that they will respond immediately. Last Saturday Dr. Ashkenazi demonstrated this when he drove over to our apartment, picked us up and drove us to the clinic for a full day of hydration and drugs. Since then Lex has been able to manage better on her own and so we have been home these last 2 days. What did we do with this time? Not much, we barely got dressed, Lex played on her computer, I made soup, worked on a painting, we watched TV around the clock, neither one of us had any desire to leave and simply relaxed, it was wonderful. This mini vacation started with a trip to the grocery store, the first time Lex has been able to go out in weeks and what does she want to do? Go food shopping, typical! So only intending to buy some fresh pita and turkey slices we ended up with so much food I needed to purchase 2 fabric shopping bags to lug the stuff home in. Lex wondered around that store reading whatever english labels she could find ooohing and ahhhing over the unique products available in Israel, but mostly she wanted the ingredients for some good old fashioned comfort foods like the sweet potato, squash soup I made the next day.

One of the things I've been missing is an oven, the apartment didn't come with one, so aside from not being able to make a roast I'm also unable to bake, something I love to do. I usually make very decadent cookies or squares, I can't help myself and both my girls get pretty upset with me because they can't resist eating them. Well, I complained to the manager of the building and yesterday he provided me with a very large toaster/convection oven just in time for Dani's arrival on Tuesday, now I'll be able to welcome her with a plate of decadent chocolate brownies and a real home cooked meal!

The weather is changing, winter is setting in, it's getting cooler and for the first time since we've arrived there are thunder storms, violent and loud, with strong winds. Perched up high on the 5th floor we have huge windows overlooking the corner of Diezengoff and Arlozorov, Lex and I love to sit and watch these storms roll in, the streets are lined with large beautiful trees that thrash around in the wind, we can see people running for shelter as the rains begin, if I look up over the rooftops I can barely see the buildings through the fog. The winds howl around us rain and hail batter our windows, then, suddenly the rain subsides the winds diminish sun breaks out and its' over and, everything returns to normal.

My Danielle

There is a very special person that I have not yet written about. Alexis's sister Danielle, bright, beautiful and intense, when she speaks which isn't often I always listen because she has a way of expressing herself that is honest and direct. There is no beating around the bush with Dani, she says it like it is and is usually right. People who don't know her may think she's shy but I know better, Danielle is an observer, she is completely aware of whats going on around her and will not hesitate to speak her mind if the circumstances require it. She is one of the most loyal people I know, and she loves her family deeply. Sometimes its easy to overlook Danielle especially after Alexis relapsed when she moved to the background and stayed there, not wanting to make waves trying to stay out of our way as we prepared to leave, but she understood what was happening and her quiet strength was unwavering. Right now I am missing Dani and I know she's missing me, I know this because she doesn't phone or email alot and she refuses to read my blog this is because connecting with me makes her sad, reading my blog makes her miss me, I get it and it's okay and Dani, really soon you're going to arrive in Tel Aviv only 8 days - better brace yourself because I'm going to bruise a few of your ribs!!

A Chanukah Miracle!

Once again all our visitors have gone home. Arielle and Seth were here for about 10 days and Lisa was here for 2 weeks they all spent most of their time either sitting with Lex in the hospital room or sitting with her in the apartment, imagine flying all the way to Tel Aviv from TO and doing nothing but sitting in an apartment the entire time, that's love for you and these friends love Lex with all their hearts. Lex's Aunt Donna also came in for a visit, and she brought with her a strong reminder of home, our lifestyle is so different that Donna's visit made me feel a little nostalgic.
Lex is still dealing with the UTI, it's taking it's sweet time in healing, there have been improvements but it's very, very slow. Only Percocet and long soaks in the bath help with the pain, yesterday Lex stayed in the bath for over 2 hours constantly refilling with warm water. I was afraid she'd drown or shrivel up to a raisin but instead she finally emerged feeling better and very clean!
On a positive note her blood-work continues to show healthy engraftment I won't burden you with numbers and statistics but she is getting closer to normal, healthy ranges in all 3 blood groups, something the PMH doctors didn't believe possible. Although, according to my sources they are delighted with Lex's progress thus far. Dr. Gesundheit from the clinic has been updating them regularly, he's doing this for our benefit so that when we return home, PMH can continue Lex's care. You're probably questioning this because of the negative attitude the PMH doctors displayed when Lex relapsed, they really didn't believe that coming to Israel would work, so when Dr. Geshudheit and Professor Slavin offered to keep the PMH doctors informed I questioned it to, but it does make sense, Lex will need follow up care in TO and who else better to provide it? Look at that, I'm writing about bringing Lex home, tears are in my eyes as I realize this, she still has such a long way to go but as every medical professional keeps reminding us getting to this point is somewhat of a miracle, so forgive me for feeling a little more optimistic today, after all it's Chanukah what better time for miracles? Speaking of Chanukah we were surprised by the low key attitude to this festival, no giant Menorah's on every street corner, no decorations anywhere just Sufganiyot in all the bakeries, still, even without all the frippery you somehow know it's Chanukah it's in the air.
I wish you all a healthy, happy Chanukah, Chag Sameach!