Monday, November 29, 2010

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.

Tuesday, November 23, 2010

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!

Monday, November 22, 2010

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.

Saturday, November 20, 2010

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!

Thursday, November 18, 2010

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.

Monday, November 15, 2010

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!

Saturday, November 13, 2010

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!




Tuesday, November 9, 2010

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.

Saturday, November 6, 2010

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.

Tuesday, November 2, 2010

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.