To OUR DONATIONS PAGE!
Raz and I have decided to partake in the fundraising of Chai Lifeline during our Jerusalem marathon run, simply because we know too well what it means to all the cancer-stricken children and their families around the country, and we know that the funds really are reaching these kids.
During Raz’s sickness we got to know Chai Lifeline (Chayyenu in Israel) very well, through being invited to their activities and trips. Amazing experiences and memories Raz will carry with him for the rest of his life! The volunteers, activities and trips of Chai Lifeline also helped to lift his spirits and stay positive throughout the sickness!
Raz will, for the 1st time, try and run 1 km on his new prosthetic leg. After that I will, together with the Chai Lifeline team, push him in a wheel chair for another 10 k. This we are doing to honor and most importantly for the recovery of the brave little fighter Shmuel ‘Muli’ Safrai! Muli is, for a few years already, battling Neuroblastoma cancer. He is currently undergoing treatments in the States. Chai Lifeline is an important part in this family’s life!
We are praying that our dear fighter friend ‘Muli’ will win this battle and come back to Israel as soon as possible!
We are starting with a first goal of $1000 and are hoping to raise this goal as we move along!
You reach our donation page here!
With Lots of Love and with a HUGE THANK YOU in advance,
Raz & Karoline
Back in September I told you about the Israeli version of Extreme Home Makeover coming to help us renovate the totally run down kibbutz house we bought to renovate after Raz had finished with his chemotherapy (and before we really realized what this renovation really would mean in terms of time, money and energy:)).
When you have watched the program below I am sure you will understand why we became so happy to get this amazing help with the renovation:)!
The channel 10 team, family and friends really gave us the best new beginning we could ever have asked for!
I was breaking my tongue with my basic level of Hebrew:), but it was definitely worth it! Sorry to all readers not understanding Hebrew, but as you all know…a picture says more than a 1000 words….the movie (without words) I believe still says it all..
http://extrememakeover.nana10.co.il/
This is be a beautiful memory we will cherish for the rest of our lives!
Thanks to All Amazing Family, Friends, Cancer Organizations for All Your Support & Love!
Thinking of the new group of cancer stricken kids that are now in Florida with the organization Lehoshit Yad. It brings the memories back from our trip, for exactly a year back. It was certainly a trip I will remember for the rest of my life, seeing those happy faces of children fighting every day for their lives. Seeing Raz face with such a huge smile on his face during the entire trip, a trip I never wanted to end because of that!
The place we stayed at, Give Kids The World , in Kissimme Florida, is a village made up from the story books. Hard to believe such place exists!
Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need.
Over 127,000 children have had their dream come true at Give Kids The World. No child in need has ever been turned away! Give Kids The World is a place where families find joy, laughter, serenity, and a lifetime of memories.
In the end of our stay in the GKTW village, Raz was given a gold star with some kind of personalized chip in it. It was placed in a tower building, a building shining from all the stars filling up the ceiling and walls. If Raz will ever return to visit the village in the future, they will then be able to find his star which will still be shining in this very special building.
I was truly deeply moved from the experience we had at this village; the amazing service from all the staff and volunteers running the place, they all made us feel so very special!
I am hoping that one day we will be back – but this time as volunteers!
Currently looking into different ways in how we can be more proactive for the future, to have our bodies standing stronger against diseases such as cancer.
Here is one presentation, from the well known dr David Brownstein, on ‘5 Signs you will get cancer & 7 Healthy Living Tips’ I found pretty relevant.
The following 7 healthy Living Tips from his presentation does not seem that radical, rather they do make sense:
#1: Don’t Smoke
#2: Maintain Adequate Iodine Levels
#3: Avoid Synthetic Chemicals and GMOs in Your Food
#4: Avoid Refined Sugars, Salts, Flours, and Oils
#5. Avoid and Remove Toxic Metals From Your Body
#6. Avoid Radiation Exposure
#7. Test for Vitamin and Mineral Deficiencies
Anyone who has read his book ‘The Guide to Healthy Eating’ and can recommend it?
A few days after we had received the letter stating that the cancer seemed to have returned, we were sitting in the office of the head surgeon we have come to know and trust since almost 2 years back.
He again told us how extremely sorry he was for the letter being mistakenly sent out from the MRI department without his knowledge and showed us the images the MRI doc had based this letter on. He explained that all the activity shown in the image, are most likely to be from the last surgery (6 months back) and the fact that Raz since then has started to use a prosthesis and in doing so putting much more pressure on the leg and this particular area.
He ensured us that if he was the slightest worried he would directly have scheduled for a biopsy to be done, but would prefer not to open up his leg again (for no reason) but to wait for another 2-3 months before doing another MRI to see if the mentioned activity by then have decreased.
I so much want to believe in what he is saying but is so scared in ‘letting’ any possible mistakes happen. Since we do trust this particular doctor very much, he has never once failed us before, we decided to do as he says and wait 2-3 months for another MRI. In the meantime we just have to keep our spirits high!
It is Thursday evening and I had just been picking up the mail, at the mail center of the kibbutz, on my way home from work.
Since the majority of our mail is in Hebrew, I normally put all the mail on the kitchen table for my husband to go through. I did the same also tonight.
A few hours later I am sitting at the table, chatting with G, while he is going through all the mail.
He mentions while opening one letter that it seems as if the MRI result, from last week’s MRI, has arrived. Since G had a discussion with our oncology doctor a couple of days back we already know that it all looks ok. However, once he opened and started to read the letter I all of a sudden see his face turns blank! It cannot be!!!
He turns totally quiet for a moment, which seemed like hours to me, before he said the words I never ever want to be hearing nor saying: “It says here that it is back!”
“What are you talking about?” I hear myself throwing back at him. “The letter says that they are suspecting the cancer to be back, this time in his femur’ (the upper leg bone that is left after the amputation), G is replying back in a ‘hard to believe’ tone.
We discussed this letter back and forth during the rest of the eve, we had no idea what to believe any longer. It seemed really too strange to be true, since our well structured and ‘extremely down to details’ doctor had just a couple of days earlier told us all seems just fine and that we can start to breathe again.
But, since we have been through similar yes-no-maybe statements just a few weeks before Raz’s cancer was confirmed by the biopsy, we simply did not know anymore what to believe. It was like being drowned in the same black water as we had already been drowned in, for almost exactly 2 years ago. “It is not possible to get drowned twice”!, I wanted to scream.
I was SO scared and furious at the same time; who DARED to send home such letter without notifying us or our oncology doc??
I was on the phone with our oncology doctor and the head of the oncology orthopedic surgery team (who was the one in charge as well for Raz’s amputation as for removing the screws after breaking the femur, above the prosthesis) the first thing the next morning.
Both of them tried to calm me down and explained that the MRI doc, who’d analyzed the images, had not taken all the activities that happened to his leg during the last 6 months in consideration. Unfortunately the letter had mistakenly been sent out without their knowledge. Both of them truly believed and tried to ensure me that all the activity showing up in the MRI, must be due to everything his leg been through and if we wait another 3 months this activity should decrease.
Since they understood they had not convinced me, we decided to meet a few days later to go through all images taken for the last half a year.
The world’s largest and most advanced underground hospital is preparing to open its doors in Northern Israel. (Jerusalem Post 7th of Nov 2013).
The 2,000 bed underground hospital has been designed to protect patients and hospital staff in warlike conditions. This one-of-a-kind medical facility is located seventeen meters below the surface of where Rambam Medical Center is expanding its medical campus to include the Ruth Rappaport Children’s Hospital, the Fishman Oncology Center, a Cardiovascular Hospital and a Biomedical Discovery research tower.
We are very excited that they soon will finish off building this brand new children’s’ oncology department in the hospital of Rambam in Haifa, Israel’s 3rd biggest city, located in the North. Of course we hope that no child will ever have to use this department, but unfortunately this does not seem to the case for the close future.
We stayed in this hospital during the 4 first months of Raz’s chemotherapy treatments, before his amputation. It was a very run down and depressing facility but at that time we did not know what our options were. Once we were introduced to the Tel HaShomer hospital in Tel Aviv there were simply no way we would go back. Here, the oncology department of children is in a much better state; a rather newly renovated department with services and atmosphere that cannot be compared to the north. Even though we had to drive for about 2 hours each direction it was so worth it, considering we spent more than 180 days in the hospital during that year.
I soon hope we will see a children’s oncology department up in the north that can be comparable to the facilities and services existing in the center – Tel Aviv area.
About a year ago I just returned back to my work, after being off for almost a year while Raz was treated for his cancer and more or less living in the hospital.
During the year spent in the hospital we all were introduced to a number of psychologists and therapists trying to help us out dealing with having a son sick in cancer, with all what that means. Of course Raz were introduced to a few different therapies through psychologists and his music therapist he became very fond of. All of us together even had a few family sessions of guided visualization-imagery.
I went to a few sessions with different psychologists in hope to get something out of it; some tools to maybe work or focus on or something that could help me in getting a grip of our life again, feeling totally lost and drained from ‘around the clock’ being alert to Raz’s daily health.
One day after Raz’s physiotherapy session he refused to go to his scheduled meeting with the psychologist (maybe we had 4-5 sessions during the year in total). He simply told me; Enough! I am not going to see any more psychologists mum! I do not want to make myself feel sad, which is something I feel every time I am coming out from one of these psychologists. You can take my session if you’d like – maybe you even need it more than I do!
I started to laugh at his last remark, at me needing it more than him. Maybe this was really the truth? I told him I felt very uncomfortable with him cancelling at the very same time the session was about to start, so I will use this time to speak to her and then let her know her services was for now no longer required.
Of course, 5 minutes into the session I started to cry from talking about my daily feelings, fears etc. Once the session was over and I came out to the waiting area, were Raz sat and waited for me, he directly blurted out; “so, do you feel much better mum? Did it make you any happier? Of course you just sat it there crying and I can tell you are feeling worse than when you first entered her office. Do you now then understand why I no longer intend to go to any of these sessions? I just simply do not want to feel bad or sad, I do much better on my own doing things that is making me feel good and happy!”
So, when my colleague (manager of the company’s Business Intelligence team and extremely logical in everything she does) came up and offered me to try out a therapy called “Life Alignment”, since she believed this could really do me good after everything we had been through, I was at first reluctant.
However, after a few sessions, I discovered this being the first type of therapy I felt gave me some sort of ‘tools’ to work with (or to be aware of ) in my every day life. Once I became aware of things that surfaced during the sessions I could better focus on these ‘issues’ and deal with them from various different angles. Of course, like with all therapies, this will for sure not be the correct therapy for everyone but it certainly has helped me to focus and set goals that are aligned with my inner self and has removed a lot of personal conflicts I have had build up in my body and soul.
Following an introduction by the founder of Life Alignment, Jeff Levin:
Vaccinations after chemotherapy, what is needed and what is not?
So, if you had a bone marrow transplant done all the vaccinations you have done are lost. These are the vaccinations that are needed to be taken.
During August polio was being found at a seawage treatment plant out in the Negev desert, in the southern part of Israel. The World Health Organization, sent three experts here to learn how the virus – which apparently arrived from Egypt or elsewhere in Africa – got into the sewage; the foreign experts worried that it could spread elsewhere.
The Health Ministry then launched a month long “Two Drop” campaign of attenuated oral polio vaccine (OPV) for children from four months old through 9.5 years, especially in the southern parts of the country.
The aim was to wipe out the polio virus in the sewage in the area that has turned some two dozen people into healthy carriers of the virus and threatens to infect the small minority who had not previously received the IPV.
Our oncology doctor then recommended us to also give the polio vaccination to Raz, since you can never know if he still has a sufficient amount of this vaccination in his body, after the chemotherapy. He was not allowed to take the ‘live’ vaccine but the inactivated since with his weakened immune system there could be a risk of him getting the disease.
For about 6 weeks, while all the smaller kids in the kibbutz we live in got their vaccinations, we had to make sure Raz had a bathroom of his own. Especially not having to share with all the 6-year old friends of his younger brother.
When this is written all, at least in our kibbutz and with Raz, has luckily gone back to normal.
Finally! After almost 1,5 years in a wheelchair, Raz is back on this legs:)! An amazing feeling!
The prosthetic leg he received this time around is based on vacuum, in order for it to sit properly around the leg. The amazing prosthetic team helped out in giving the leg a bit ‘cooler’ look. They simply ‘melted’ down one of Raz’s Nike lycra T-shirts, he had been swimming in the whole summer, hence the Nike logo at the front of the prosthetic.
This logo actually describes Raz’s character in a perfect way, since he simply is a kid of ‘Just do it:)’!
The beige ‘sock’ in the right hand side picture is something Raz has to roll over the silicon, he covers his leg in, in order to create a vacuum for the prosthetic to stay in place.
Ewing's Sarcoma 