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!

Ahhhhhhhhh!!!!!!!!!

The last few days have been less fun than we thought they would be, you'd logically think that with Lex's bloodwork showing engraftment all her problems would be behind her but alas that isn't the case. After dealing with so many major health issues over the last 6 weeks it surprised both of us that something as basic as a UTI would be so problematic, but it is. The discomfort caused by this UTI is all encompassing, it has literally blocked out most of the last 2 months, actually maybe this isn't a bad thing.....afterall, do we really want to remember everything that has transpired up to now? We do and we don't, and I would prefer to bury a bad memory with a good one not a nuisance one such as this! So Lex is hydrating herself to the point of contributing to Israel's water shortage, and waiting for the morning when she wakes up and suddenly realizes that this very uncomfortable problem is gone.

Dorothy has returned from the Land of Oz

This morning I woke up and realized 'I don't have to go to the hospital today' Lex is home. She slept in her bed last night, and today barring any surprises she can relax in the apartment all day long. 'Dorothy is home and ding dong the wicked witch is dead'. Today is a good day. She's come a long way from that terrible day in September, at times I was afraid to hope she would get here at all. I've been reflecting on the events that lead up to today from the whirl wind of activity the days before we left, to settling in here in Tel Aviv, to coping with all the medical issues, to trying to provide a home for both of us and I'm proud, proud of both of us and proud of everyone who helped us get to this point not just financially but emotionally so many people sometimes complete strangers have offered us support, this really can be a beautiful world. Calmness has descended on us albeit temporary but it is appreciated after so much turmoil. The next step for Alexis is fairly simple, she has to wait. Over the next few months she will receive infusions of NK cells (natural killer cells)once again from my stem cells. The NK cells will swim through her bloodstream searching for any rogue leukemia cells that may still be hiding and destroy them....obliterate them - make sure that the wicked witch can never ever return. But for now over the next few days Lex can get back to herself a little we can start to enjoy this magnificent city that made us feel so welcome and we can have a little normalcy in our lives. Welcome home Dorothy!

Mini-Me is Half Way Home

Lex has turned a corner. Last Thurs Nov. 18 she had a biopsy. The reason for the biopsy was to learn why she was engrafting so slowly. Professor Slavin said there were a few reasons, the scariest and main one was the concern that she still had leukemia, another, was because of all the chemo and drugs her marrow was damaged so the graft couldn't thrive, and finally, she had several fevers requiring antibiotics and steriods which also will slow down engraftment. So a biopsy was performed. Waiting for results is hard, you try not to think about the outcome, you're afraid to hope, you feel as if you're holding your breath for hours, Lex got preliminary results that same afternoon and they looked good but we didn't relax until Sunday when the doctors came in with big smiles on their faces 'Alexis was solidly in remission' no leukemia! Now, this doesn't mean we're hopping on the next plane to Toronto, she is not cured.... yet, what it means is she now has a real chance of beating this disease. Getting to this point is another miracle, more than half the patients treated don't survive the 1st month because they are too sick and frail to tolerate the treatment, Lex had some pretty intense moments over the last 33 days but thankfully nothing the hospital couldn't control. The rest of the miracle is in something called 'chimerism' this test was done along with the biopsy, a chimerism test is extremely important because it tells us what percentage of her marrow is now donor, the more donor cells they see the better, well the second miracle is that she is now 100% donor, my stem cells and bone marrow have taken up residence in Lex's blood you might say I've moved in and I'm staying! With all this good news she has been discharged from the hospital, to become an outpatient with the clinic. The engrafting is still slow, hopefully in the next 2-3 weeks she will be stable enough to proceed with the next step, which is the make sure the leukemia doesn't ever come back. But in the meantime this new phase is very welcome, being an outpatient allows Lex to have some normalcy in her life something that has been missing these last 5 weeks. She needs to be extremely careful though, she must mask when around people, for fear of being exposed to germs, what she eats must be clean and cooked no Ahi Tuna for now....Sorry Lex! She cannot go in the sea or sit in the sun for fear of bacteria or skin rashes. But even with these restrictions being out of the hospital is great, and 'mini me' and I are planning to enjoy it.

Learning to Dance in the Rain!

'Life isn't about waiting for the storm to pass, it's about learning to dance in the rain' This quote has become my mantra, I think about it all the time, I had it engraved on a bracelet that I always wear. Lex and I are at the center of a tornado the winds swirl around us its cold, wet, dark but it can also be calm, even peaceful. We take advantage when it's calm, when the storm abates a little, that's when we're able to leave the hospital take walks and get day passes, the calm times haven't been to prolific yet but when they happen we 'dance' a little. Life is about balance, trying to have good moments during hard times. I believe that you must always be aware of the good moments even during the worst, that you must try to do something you enjoy or that offers you peace no matter how small, especially when you are in a situation like this, it can be all consuming, my focus is totally and completely on Lex every day, is she eating enough? sleeping enough? does she have pain? what can I do to put a smile on her face? I don't require much, in fact when the calm days happen that's all I need, but in order for me to be able to give her the best possible care/support sometimes I need a change, a chance to recharge. Long walks help, going out with a friend for dinner works, painting, anything that offers a little change from the routine strengthens me to be able to focus on Lex, this is the balance that I seek, that I need.

We have been very fortunate to be inundated with visitors from Toronto, and once again they are flying in. Mo will be here for at least another 2 weeks, Lisa came in last Thursday tomorrow Ariele and her new husband Seth are arriving and next Thursday Lex's Aunt Donna will be here. But as wonderful as it is to see everyone I have learned the hard lesson of having to say good-bye and today Elise one of the most genine people I have ever met is leaving. Elise, who wakes up everyday singing 'it's a beautiful morning,' was the first person we saw when we got off the plane on Oct. 7 and she hasn't left our side since, she has met with and befriended all the doctors and staff from the clinic, she has an infectious sunny disposition a perky personality with a dose of old soul thrown in for good measure. We immediately invited her to move in and she has been with us ever since, because of her we never felt alone she devoted her last weeks in Tel Aviv to us, offering friendship, love and support. Her grasp of the language, knowledge of the city have been invaluable and the bond we forged with her was instantaneous and permanent. We love you Elise and will miss you, but know this, Toronto maybe a 12 hour flight but with today's technology we are are only seconds away!

Cautiously Optimistic

The last few days have been challenging. Lex's bloodwork continues to show slow engraftment, she is getting fed up with being in the hospital all the time, but this process can't be rushed her body will do what her body will do. There have been some signs of progress and we latch onto them no matter how tiny anything that could mean she's engrafting better gives us hope. Then yesterday happened and of course it was the 28th day post transplant her WBC's finally moved up enough to allow her a day pass to leave the hospital. Lex was unhooked from her I.V. pole that she named 'skinny bitch' and was given permission to come home to the apartment for 6 beautiful hours. I ran out to the grocery store and bought the supplies I required to make her a nice dinner and while I was cooking she and Elise sat out on her balcony enjoying the fresh air and chatting, then, for the 1st time in over a month we set the table and sat down like a family for dinner, it was wonderful, felt like a vacation for all of us and watching Lex eat her food with enthusiasm after so many depressing hospital meals was great. After dinner we settled in to watch Ellen on TV and at 9:30pm she went back to the hospital to once again be hooked up to her IV pole. Today's bloodwork also showed improvement and suddenly we're feeling cautiously optimistic, if her blood continues this trend then she'll be released and become an outpatient, that won't happen for about a week but now we can at least think about it.

Arielle & Seth's Wedding-Through the Eyes of Skype!!

As expected yesterday was a tough one. Most of the staff that takes care of Lex were aware that she was sad and several visted her throughout the day, thank you Ruth, Karin, Ash and Dr. Gesundheit you definitly helped put a smile on Lex's face. Mo and I went shopping in the Carmel Market in the morning for supplies for our 'wedding' feast then I left Mo in the apartment cooking all day long, preparing a meal to rival any gourmet restaurant! Savoury goulash with vegetables and beef, basmati rice with lentils and cinnamon twist cookies for desert. At 4pm Israel time we turned on the computer to skype Lex's girlfriends getting their hair and make-up done for the wedding, the girls were incredibly generous with their time each one made the effort to sit and chat with her throughout the morning. Lex even got to see Arielle in her wedding gown before she left for Casa Loma for a photo shoot. Rick has spent the last week working out a way for Lex and I to watch the wedding ceremony in the synagogue. The 7 hour time difference made it difficult for us to see the entire wedding but Rick with his assistant's Dani and J cleverly set up a computer in the sanctuary and through skype we were able to watch the wedding procession live from the hospital room, of course, we cried, we smiled and we admired the beautiful bride and bridesmaids and when Seth crushed the glass under his foot we yelled 'Mazel Tov' with all the guests, when the ceremony ended we enthusiastically sang 'Siman Tov and Mazel Tov' and clapped our hands, even though we weren't able to attend the wedding in person we were there in spirit and Arielle, Seth and all Lex's friends new it!

5 Weeks!!!

November 13, 2010, we've now been in Tel Aviv for over 5 weeks, 5 weeks, it feels longer more like months so much has happened. I've established a routine, wake-up 6:30am, shower, eat breakfast, tidy up the apartment, walk to the hospital, spend the day with Lex after dinner leave the hospital, stop at the grocery store, get home by about 8pm, try to phone or skype family and friends in TO, go to bed by midnight, sometimes the routine includes preparing food for Lex but that's it. Family and friends who visit us fill in the gaps and then I get a little extra time to myself to paint or watch TV, it's funny because I just realized that most people have a similar routine, yes, the circumstances are probably different but the routine is the same, does this mean I am now 'living' in Tel Aviv as opposed to just existing here? I believe it does, I've become a familiar face to the barista's in Aroma who know my name, the security guard at the hospital no longer searches my bag when I arrive and the cashier at the local AM PM (a small 24hr grocery store) recognizes me whenever I go there. There is something very comforting in this, yesterday I got my hair cut and coloured, 'Effy' my new stylist and I hit it off immediately-and he has skills too! Gradually a 'life style' is evolving and it feels normal. The staff at the hospital have also contributed to this feeling of belonging they've bonded with Lex and I and the relationship has moved past just a clinical one.

Lex continues to slowly improve, each day we anxiously wait for the results of her blood work for any sign no matter how tiny and lately she has been delivering, this is not an easy process she is coping with fevers, rashes, nausea, puffiness and swollen ankles but Dr Askanazi in his usual abrupt manner states that non of these symptoms 'impress' him and brushes them all off with a wave of his hand, what he really means is that considering what her body has been through she hasn't experienced anything significant enough for him to worry about, amen.

Tomorrow is November 14, probably emotionally the hardest day for Lex since we've arrived, tomorrow is her dear friend Arielle's wedding. Lex was supposed to be a bridesmaid for her and there is a beautiful teal dress half finished still hanging at the dress makers. Not being able to participate in that wedding with all her friends and my not being able to sit in the congregation and watch the procession is heartbreaking, but I know Arielle only wants Lex to get better and come home healthy and as she said before we left, 'there is nowhere I would want Alexis to be right now than in Tel Aviv' so Lex it's okay to feel sad but just for a little bit, you have a job to do, and between Mo, Elise and I maybe tomorrow won't be so tough.
Arielle, we love you and Seth, you will be a beautiful bride and tomorrow is going to be a beautiful day. May everyday for the rest of your lives be just as wonderful for you as your wedding day....Mazel Tov!

Lyat, Lyat - Slowy, Slowly

Finally something is brewing, slowly, slowly those tiny little neutrafils are starting to show some life, it's early maybe to early for me to write about but I'm feeling particularly hopeful tonight and I really wanted to share. Lex has been in hospital for 3 weeks tomorrow with her friends and Aunt Karen visiting from Toronto time has passed quickly, however, 3 weeks is a long time for a vibrant person like Lex to be cooped up in a hospital room, it's time for her to come home. We have to be patient a little longer because the engraftment needs to be solid before she can be released so another week at least and now that Mo has arrived maybe the magic will begin. In the meantime I'm still doing my thing, walking to the hospital daily to be with her and preparing soups or painting by night if I'm not to tired.
Having my sister here was wonderful and I'm sad she's leaving if there's one person in the world that I can be relaxed around it's her, she gets me like no other and she loves my girls completely. Safe flight home Karen, I'll miss you and I love you.

My Alexis

My Alexis, smart, funny, compassionate, beautiful. This child of mine has the sweetest spirit and demeanor, she has the ability to draw people to her with simply a smile. Everyone who meets her instantly wants to be her friend there is a constant glow about her, in my family we say "she is lit from within" my child is also strong. Throughout this long process the one thing that stands out is her determination to be strong no matter what she has had to face, diagnosis's that would have brought anyone to their knees. Over the last 6 years Lex has had some frightening experiences, blood clots, pneumonias, a collapsed lung, relapses and throughout it all my one impression of her is her astounding ability to adapt, don't get me wrong there has been shock, fear and sadness but after, there has always been the strength to accept the diagnosis and to fight, fight as hard as she can. She is like a bouncing ball push her down and she always pops right back up. This is why we came to Israel for medical care because the crime would have been not to come, not trying to heal Alexis is akin to giving up and that is simply not who we are. I believe in the treatment she is receiving with my entire being and more importantly I believe in her.

Tel Aviv to Me

Tomorrow is 14 days post transplant, Alexis is doing well, she feels good and the doctors believe that it's only a matter of time until she engrafts. Everyday they do blood work and we always ask what her White Blood(WBC)and Neutrafil counts are, these are the most important indicators of engraftment and at the moment they are both at 0, this is why she has no immune system. When she engrafts her bone marrow will begin producing healthy WBC's and Neutrifils again - a normal WBC is between 4 and 11, healthy Neutrifils should be between 2 and 6, as soon as her WBC is about 2 and there are no other complications she will be able to continue her care as an outpatient. I look forward to bringing her home to the apartment, going back and forth to the hospital daily doesn't give me time to shop, cook or do laundry this may sound nice to some, but eating 'take out' all the time gets tiring I crave a good old fashioned home cooked meal made by me.
People ask me how I like living in Israel, I guess it sounds exciting even exotic living in another country but, Tel Aviv for me consists of 3 streets, Arlozorov, Diezengoff and Weizman these are the 3 streets I walk every day to get to the Icholov Hospital, it takes me 20 minutes and I walk every morning and usually cab back at night because when I leave the hospital it's dark out, the cab ride costs $25NIS or about $8.00.
As of this Thursday Nov. 4, we will have been here 1 month, in that entire time I have only gone to the beach once for an hour - the day after the transplant when I needed the serenity of the sea, sun and sand for a bit. So do I like living here? I guess I do, although I don't really think this is living it's more existing, we're here for a very specific purpose there is neither the time nor the desire to actually 'live' here until we have achieved what we set out to achieve, after everything is OK ask me again if I like living here, at that point I may have an entirely different answer for you.

Day 10 - Rick, Jen, Tal, Seth & Hayley Head Back to Toronto

Today is day 10, engraftment is still a long way off but the doctors are managing Lex's health issues well, her throat has been very sore - mucositis, a direct result of chemotherapy but the drugs are working and most of the time the pain is tolerable enough for her to eat soup, ice cream and the best medicine of all an Iced Aroma Light! Thank you Aroma! Her friends have not left her side since they arrived, a rotating system had to be arranged because Lex has no immune system right now and is very susceptible to infection, so only 2 at a time in her room. Dr Ashkenazi is a brilliant doctor who is also a bio-chemist. He says the most outrageous things to us, told us he prefers mice to people because they don't ask questions or, talk at all. He affectionately calls Lex monkey or turtle depending on his mood, he is a man who growls like a bear but has a heart of gold....don't tell him I said that because he'll vehemently deny it. The other day he heard that Lex had 4 guests at the same time, he stormed into her room and raged that "this isn't a train station" and kicked everyone out. I love this man.
We decided to have a shabbos dinner in the hospital, so with Rick and Elise's help we got wine, challa and candles, I made chicken soup and Elise made meatballs, we bought chicken, vegetables and rice from a hamish restaurant right across the street from our apartment, piled all the food into a bundle buggy and cabbed to the hospital. We used the lounge near Lex's room and set up our 'shabbos picnic' said the blessings, lit the candles, drank the wine. The meal we shared was one full of warmth, laughter and love, a splendid shabbos dinner with family and friends.

Jen, Tal, Seth and Hayley are leaving this weekend, having them here for the last 2 weeks was wonderful beyond words, the love and support they each provided all of us was incredible, because of them I know Lex doesn't feel so far away and neither do I. Rick also is flying home tonight, he has been a rock for Lex and I, plus his incredible technical skills were greatly appreciated, the TV in my bedroom now works, the Magic-Jack works, all our phones are properly programmed and he figured out how to get hot water in our shower too! Thank you Rick I love you and will miss you, but Dani needs you too!

Tel Aviv from a Hospital Room - Day 8

We have been in Tel Aviv for 3 weeks today, but the last 9 days have been spent in Alexis's hospital room. She was moved to a private room last Sunday, compared to PMH this room is a palace, very large with big windows overlooking the city, at night the view is spectacular. In her room there is a built-in desk with drawers and cupboards, a TV with a DVD player and a bar fridge. There are also 2 single beds so she can have someone stay over comfortably. At PMH I often slept over as did many of Lex's friends we were forced to sleep in a very uncomfortable often broken lazy boy chair. This hospital actually encourages the patients family and friends to stay, how humane. The food on the other hand is pretty terrible, breakfast consists of watery cooked cereal, a hard boiled egg, hummas, toast and different pre-packaged white cheeses. Lunch is always some kind of meat dish like ground beef patties or chicken, watery soup, hummas and overcooked vegetables. Dinner, repeat lunch but add cereal from breakfast, mashed potatoes, kugel or rice and there is always packaged hulava for desert, it should be noted that this diet is called a microbial diet as she is not allowed to eat anything fresh until she engrafts. Lex, however has a highly developed palette, meals to her should be tasteful, attractive and satisfying every meal a gourmet experience so, upon seeing the food provided by the Top Icholov Hospital she quickly turned up her elegant nose and refused to eat. Sending all into a tizzy trying to provide a microbial diet that was both satisfying and tasty, this was achieved by me, preparing homemade soups, macaroni and cheese and homemade applesauce in our tiny kitchen! Needless to say Lex was pleased with my efforts and is now anticipating what other epicural wonders I will create for her.

Day 5 - Post Transplant & Visiting the Wall

It's 9pm on Monday and I am sitting in Lex's hospital room, I'm staying over tonight because she asked me to. What a day, today was 5 days since the transplant. Today was the day Lex received the very last round of chemo she will need. Part of the protocol, this chemo will kill the T cells that have been running around in her blood killing off the Leukemia. The maximum length of time that the T cells can remain active in her blood is 5 days, after that they become to dangerous to Lex's overall health. The chemo was hard on her, but all her reactions to it were expected, Dr. Slavin came by to see her and commented that he'd never had a patient as hardy as Alexis, he always makes her feel better. The chemo that Lex was given is highly toxic and so she has received the equivelant of 10 litres of fluids to flush out her kidneys, obviously this is exhausting for her, neither one of us expects to get much sleep tonight.

Rick and I decided to go to Jerusalem yesterday, I really wanted to go to the Wall. It was quite the trek we took a bus then a taxi and then walked the cobblestoned lanes amongst thousands of tourists and soldiers, along the way religious men blessed us for a shekel. I watched two men wrapping a sedar with red string, winding it around and around until they had enough to cut off to give out to anyone who wanted one. We ate lunch at a falafal stand crowded with soldiers casually eating Shwarma while cradling their Uzi's. The Wall itself is a source of religious inspiration, many are deep in prayer covered heads pressed up against it asking for divine help. It is here I came not for a miracle but for that special feeling of spirituality one gets when surrounded by these rich markers to our faith. I don't pray very well, but I wanted to absord the atmosphere, feel it, breathe it in and gain strength from being there. The idea struck me that we are a strong race that has survived for thousands of years in spite of all the terrible obstacles and my family also has the strength-koach to cope with whatever lies ahead.

Day 3 - Reflections

Sat. Oct. 23, Day 3. I slept well last night, but like every single day since I've been here I wake-up at 6AM, after a shower and breakfast I decided to walk to the hospital. Shabbos in Tel Aviv is lovely, so much quieter than the rest of the week, less traffic, most stores and restaurants are closed and people seem more relaxed, this early morning walk was cathartic for me, a chance to clear my head we've been so busy running back and forth to Alexis in the hospital a quiet walk was exactly what I needed. The weather continues to be spectacular, hot with bright sunshine and clear blue skies, this is such a beautiful place, if it's calm like today or chaotic the rest of the week there is magic. I forgot that this is a country at war until last Tuesday at 11AM when the air raid sirens screamed across the city, it really startled us and I found myself asking what the evacuation plan was, there we were on the 20th floor of the medical center and I'm suddenly wondering what they would do if attacked? Well, I never got an answer because it was only a practise siren but still.....The soldiers are mostly young and attractive in there khaki's but they're also just kids laughing, talking and making plans, take them out of their uniforms and drop them into Thornhill and they would blend right in, but then you notice the weapons and you realize this is serious.
I got to the hospital early, Lex was still sleeping, she's getting worn out by her roommate a serious snorrer without a C-Pap, thankfully she is moving to a private room tomorrow. Her friends have started arriving Jen, Tal and their adorable son Seth came in yesterday, the minute Jen was settled she found her way over to Alexis in the hospital the main reason she is here is to be with Lex for the next couple of weeks, Hailey arrived today and has already called, her decision to come was also to be with Lex. Lex's support system is strong, including Rick and I there are now 7 of us here from Toronto. I also wanted to mention the staff from the clinic, because they are treating us like family, both Karin and Ruth have visited Alexis with Karin bringing home made brownies yesterday, I don't think we have ever felt alone or lost here and this is partially due to the them.

Day 1 - Post Transplant

I'm sitting in my little kitchen, it's 3:30pm on Thurs. Oct. 21. I'm at home because I'm bruised and tired, yesterday was a very long day, yesterday was 'Day 0' - transplant day. Lex got through the day well, at one point after a pretty difficult procedure she was still groggy from sedation but could hear us discussing lunch, well for those of you who know her this probably won't surprise you but we were planning our lunch when suddenly a very sleepy voice joined in the discussion "I'll have a tuna sandwich on whole wheat with extra pickles, some cinnamon twists and a nana tea" she said, we all looked at her stunned that she could even talk let alone eat and then smiled and added her order to our list, when the food arrived she ate with gusto! Lex is a survivor, "one tough cookie!"

Engraftment is the next major step which will take about 2 nerve wracking weeks. Lex will have no immune system at all until engraftment and therefore will be very vulnerable to infection, any exposure is potentially deadly during this time so her doctors have decided to keep her in hospital in isolation until she engrafts to protect her and also provide her with any antibiotics she may need. There are so many risks involved each step is a potential land mine that Lex needs to avoid in order to survive, but with my very angry (K cells) 'killer' cells running around in her blood attacking the leukemia maybe we have a chance!

As I sit here I can't help but reflect on the significance of Alexis receiving my stem cells, I gave her life 27 years ago and now I am trying to help her keep her life. We have come full circle, in so many ways, the original donor cells have now been obliterated by my cells a circle, the relapse dates 6 years apart but the same date each time is a circle, is our coming to Israel a circle too? I think maybe it is. Whatever happens I know this was the right decision, I will never regret that we came to Israel.

Living in the Land of Miracles - Hoping for a Miracle

Tomorrow's the big day, tomorrow is the day that Alexis gets her transplant. It will be a long day and it starts with me, I arrive at the clinic at 7am for a bone marrow aspiration, they need about a litre of marrow from me, a couple of hours later I go to the transplant clinic to be hooked up to an Apheresis machine that removes all the blood from my body takes out K and T cells and and then puts the blood back into my body, the cells that are removed from my blood are what are transplanted into Alexis's marrow and blood, the transplant itself is anticlimatic a simple I.V. bag that takes only about an hour. Once the transplant is done, we must wait about 2 weeks for engraftment, this will be the beginning of a long road to recovery hopefully Lex won't experience too many of the side effects that can occur but the reality is that she probably will, so we are hanging onto the hope that because she is in great shape physically and emotionally she will get through the really tough moments. As complex as tomorrow sounds it's really only the beginning the very first step towards what we hope is a cure. This journey has been so hard, so emotional, we cry and laugh equally, sometimes at the same time. We have pinned our hopes on a team of brilliant Israeli doctors who question why there were no options for us in Canada, they really believe they can help us and have given Lex back her hope. We are living in the land miracles, our being here is a miracle, so why not another one.

28 = Ko-ach

My family has a number that pops up constantly in our lives. It's the number 28, or 2's and 8's both Dani's and my birthdays are on the 28th, Alexis's birthday is on the 22 of the 8th month, our address at home is 28. Alexis's 1st diagnosis 6 years ago was on Sept 28/04 and her recent relapse was on the same day Sept 28/10. The apartment we rented in Tel Aviv is unit #28 and the buildings address is 28...there is more but you get the point. I emailed our Rabbi regarding the significance of the #28 in Judiasm he responded that 28 is Koach (pronounced ko-ach)which means strength, so we are literally surrounded by strength, which is a good thing!

Impressions of Tel Aviv

Can you believe we've only been here 7 days? It feels like a month, we've been so busy. The medical stuff is intense, time consuming and depressing, but we are also living here now, shopping for groceries, taking taxi's, learning our way around and trying to communicate, so I thought I'd write about what it's like to live here. First of all the sidewalks - they're really wide, people bike, drive mopeds and segways on them, those walking better be careful not to get in the way of a biker or they may be run over! You also have to watch where you step because poop and scooping isn't done by everyone, when it rained the other night the sidewalks became so slippery that I was worried I'd fall. They never wash the sidewalks or roads like they do at home because that's a waste of water a precious commodity.

I would never drive a car here the Israeli's are impatient drivers always in a hurry if you don't go fast enough or wait too long at a light you get honked and yelled at, cabs are the worst, I'm becoming a nervous back seat driver here.

The language is beautiful and very difficult for me to learn, Lex is keeping a journal of Hebrew words everyday she adds a few new ones, she is starting to speak in sentances and is leaving me way behind! I have learned one very important word though, it's apho (pronounced a pho) it means "where" and is very handy like apho the bathroom, or apho Arlozorov (the street we live on) or apho Aroma, using this word makes me feel like an Israeli, it's almost a sentence!

Today, Alexis's dad arrived, and I decided to take the train to Ben Gurion airport to meet him, it was a challange for me to see if I could find my way with my very poor grasp of the language but I used my magic word "apho" and was guided by total strangers with slightly amused looks on their faces who almost always answered me in perfect english.

Israeli's are a very boisterous people, they can be loud, impatient and direct but they are without a doubt the kindest, warmest people I have ever known, total strangers have offered help, support, food, and accomodation unconditionally and although we haven't needed help too much it is comforting to know it's there if we ever do.

Hospitals, Aroma and Ahi Tuna!

The last 3 days have been pretty intense. We have been at the Icholov Hospital daily from 8am-6pm. Did you know that the sun sets in Tel Aviv by 5 pm so when we leave each day it's dark out. During the last 3 days Lex has endured heart and lung tests, dental exams, biopsys, bloodwork, transfusions, meetings with the medical team managing her and chemotherapy. Through it all she has kept her sunny personality and bright smile. She makes friends wherever she goes taking email addresses or phone numbers wanting to make everyone around her comfortable.

Today she got the piccline, this means that she will no longer be poked everytime they need to take blood it's also what will be used for the transplant next Wednesday, she was nervous to get the piccline which is funny considering all the other stuff she has to go through and it upsets her because it acts as a constant reminder of whats coming. There is some down time at the hospital when we're waiting for the next appointment so we've been hanging out at Aroma, we like it there not just for Americano Coffee but for the free WIFI, however, seeing all the patients hanging out there in their hospital pyjamas looking like escaped convicts was a bit of a shock.

In spite of all the medical stuff we have still managed to have a little fun, our apartment is in a nice location we've found some terrific local restaurants to eat in and typical Lex discovered the one restaurant that serves Ahi Tuna her favorite! The Diezengoff Mall is up the street and the beach is only 2 blocks away, every morning we wake up to beautiful sunshine and cloudless skies, Lex has a tiny balcony off her bedroom and she likes to eat her breakfast out there.

The line up of people flying in to be with us is growing daily, as of today there are about 10 family and friends flying in over the next 3 months to offer support, this amazes me especially Lex's friends and then I remember that this is Lex, of course they want to be with her!

We love being in Tel Aviv, living here like native Israelis, we've been grocery shopping and I had to ask which cereal had fiber in it because everything was in hebrew, they only have pink tuna, no ziplock bags and so much hummous - have you ever had hummous with pickles? I'm told it's pretty good! The people are warm so many offers of help, we've even been invited to a wedding in early January and all being well we will go.

A Good Beginning

We arrived safely last Thursday and it's been a whirlwind ever since. We feel comfortable here, which I find so surprising, I mean, think about it we're 12 hours from home, barely speak the language, don't know the money or the city, we were met at the airport by our wonderful cousin Elise who has been living here but outside of her we really don't know anyone and yet Lex and I feel safe here.....at peace. So far we've been able to accomplish everything we needed to do with ease we met with the doctors, found an apartment and have navigated the city with no issues. We've actually had a very nice 4 days Dr. Slavin said " rest up, get over the jet-lag, we will begin on Monday," so we used the time to apartment hunt, explore the city and thanks to our pilot friend Matt we were even treated to a 1 hour flight around Tel Aviv in a tiny plane-it only seats 4 people and I only felt airsick at the end! This is a good beginning, everyone we have met has been exceptionally kind and we are feeling hopeful.

The medical tests began yesterday with bloodtests on both of us and then Lex had biopsy today, the doctors are gathering information and will proceed with her treatment based on the data they collect. But we are free this afternoon and our plan is to begin feathering our cozy little nest.

Baby Steps

So we are now flying, took off at 5:35, should land at 11:00am. Got to the plane and there were paper cranes everywhere, on both our seats, the airport staff seem to feel that this is important and have followed through but I kind of wish they weren’t doing it, I really just want to not think about what’s happened for a little while and these cranes keep reminding us. Alexis doesn’t seem to mind though so maybe I’m being too critical. Anyway, we each have our own pod. Lex is completely separated from the other passengers and the stewardesses are giving her nice attention. For dinner I’ve ordered Beef Tenderloin with asparagus and Lex got Halibut with rice, we also get smoked salmon entrees a salad and dessert plus a selection of cheeses. The wine is flowing the Girl with the Dragon Tattoo is on t.v. and I have an eyemask to wear when I feel like dozing off. This is a very pleasant way to travel, how we got here is a story so incredible that I don’t have the words to describe it, but I’ll try.

Last Wednesday we learned that Alexis had relapsed the doctors told me she had 80% blasts in her blood. When we learned of Alexis’s relapse we were shocked, and very scared. Relapsing now was bad, only 71/2 months out from the SCT. PMH told us as gently as they could that they had no treatments for Lex except chemo. So what do you do? I knew that I was way over my head now, I didn’t know where the trials were I wasn’t even sure how to find them. I learned that there was treatment that looked promising in Israel but the cost was $300.000, so much money. Money we didn’t have. A friend put out a plea on Facebook for help and I emailed and facebooked everyone I knew. Last Thursday morning I didn’t know if we would be able to raise the money needed to save Lex’s life and today Wednesday less than a week later we are flying 1st class to Tel Aviv. So much has happened in the last 6 days. PMH agreed to work with us once we shared our plan with them, in fact when we had the meeting with the doctors last Friday I already knew what medical treatment I wanted for Alexis and had talked with Prof. Slavin in Israel which in retrospect probably helped because we had the beginnings of a plan something to work towards and a kernel of hope, even though the PMH doctors weren’t overly enthusiastic with our proposal they also knew that they had no further treatments for her so they didn’t stand in our way and instead helped us prepare Lex for the 12 hour flight by topping up her platelets and haemoglobin and giving her antibiotics. There is nothing in this world more upsetting than knowing your child is so sick that the you have to leave your home and travel half way around the world to obtain medical aid because your country of origin doesn’t provide it.