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.