Cito CITO

CITO is a standardized test for highschool admissions. This test is given in the last year of the primary school in the Netherlands used to assess the academic level of the students. It is rather important to do well, as the school of your choice will look at your score when they decide to admit you or not. The scores coincide with the different learning levels of the Dutch highschool system. I am adding an overview for the Dutch readers as most people don't have a clue what the cito scores signify:

cito score versus vervolg opleiding:

Basisberoepsgerichte leerweg: 501 - 520
Basis- en kaderberoepsgerichte leerweg: 519 - 525
Kaderberoepsgerichte leerweg : 524 - 528
Gemengde / theoretische leerweg 529 - 533
Gemengde / theoretische leerweg en havo 532 - 536
Gemengde / theoretische leerweg en havo / vwo 535 - 541
Havo 537 - 540
Havo / vwo 540 - 545 Vwo (Gymnasium en Atheneum) 545 - 550
Anyway, since Christmas Kiara has visited many schools trying to determine where she will go next year. The school of her choice requires the level of HAVO/VWO. Last Tuesday after school I saw a lightning flash fly by, or so I thought. It was actually Kiara telling me the she had scored a 547 out of 550! This is a score well into VWO level. It sure was party time! We celebraterd with Mom and my sisters Adrienne and Aldith. I am so proud of her as she worked to the best of her capacity. Her attitude towards school is really wonderful and it is so nice that she can procede however she wishes.

Here is Kiara's quote which was published on the school website:
"We zijn de laatste tijd veel aan het oefenen voor de CITO. vooral de laatste week, nu maken we elke dag ongeveer 3 oefentoetsen. Mij lijkt de CITO toets erg leuk, omdat je niks hoeft te schrijven en niemand je afleid {hopelijk}. We zijn ook in de krant (TROUW) gekomen. We zij met school op de fiets naar het Comenius college geweest en de volgende dag naar Groenhorst college."

"Lately we have been practicing a lot for the CITO exams, especially the past week. We now do 3 practice tests each day. I think I will really enjoy the CITO exams because you don't have to write so much (MC) and nobody is able to disturb you. (I hope.) We also made the TROUW newspaper with an article. We visited the Comenius College by bike and went to Groenhorst college the next day."
Kiara

Later that week Kiara and Aldith were the photography team(#imgcrew) of yet another event!

My sister Angélique celebrated the fact that she received her Masters Degree!! Congrats to her, I am so proud!

What's next?

As the building goes on rapidly, me moving into the Entrada is getting closer and closer to a reality. The struggle to get there is emense, but I seem to manage. (our flat will be situated where the yellow frame is. This Photograph was taken by Kiara.)

My stay in the hospital lasted 2 weeks. By the second Friday the urologist opted for surgery. I had wat they called a crying bladder in Dutch. Meaning that the lining was so thin all around that there were a lot of tiny wounds all around. They fixed the problem by scorching the lesions which finally put an end to the severe bleading. In total I was given 11 packs of blood, 2 pakcs of trombocytes an 1 pack of leucocytes. I have now become the honorary member of the vampire squad.

No seriously, this was really a close call, my GP tells me a coma was only a day away. Thanks to Cecile from Buurtzorg for being so attentive and persuasive. I was in first aid, 40 minutes after her arriving here. Things went way too fast for me. Once again the Gooi and Vechtstreek Ambulance did a fabulous job. 20 minutes from the Dr.'s call to delivering me at the hopital with a little hold-up caused by yours truely cause I wanted to finish breakfast and make an important payment for the Entrada project.

Once I was home I got the heebee-jeebies. It wasn't until then that I reallized that this bleeding had almost killed me. It was strange to hear my family say that they were worried I might not be coming home. I took about two weeks to rest and come to terms with everything. I had been prescribed peace and quiet and was told to stay away from stress.

A lovely suprise was that both Ali Ball and Lalu Carter (old schoolfriends from Rosemead) came to visit me. I am sure that was part of the remedy!

I came home paralysed in both legs. The process had carried on in the meantime. This also meant the pain had deminished somewhat. When I got home my new bed had arrived. It offered me an opportunity to sit upright in bed. I got practicing and was soon sitting up 2 hours at a time. To me this meant that sitting in a wheelchair is definately a possibility. My physical therepis t who ensured me he could do the job suddenly decided that he wasn't capable. In fact he told me I wanted to stuff that I couldn't. This annoyed me so much it got me sharp again. I did some research on the internet and checked out De Hoogstraat in Utrecht. It is a rehab center like the Trappenberg, only, they ar specialised in Paralyses. The had an excellent brochure online which proved that my premonition that I should be able to do more than lie in my bed was true. A call to my GP has got things moving. Dr Bussemaker from the Trappenberg, who incidently has turner around 180 degrees and is doing more than can be expected of her, was called by my GP and she is making plans for me as I write.

Unfortunately I woke up one morning with a strange deformity of my sacrum. It looks like it is fractured and it is extremely painful. I have been waitng forever for an x-ray which will finally take place tomorrow. I'm afraid they won't be able to do anything about it, so I hope the pain team has a solution.

Back to the hospital

The last couple of days I have been feeling very tired. Since monday morning there has been blood in my urine. This is a common problem with catheters so we waited to see what would happen. By Tuesday morning I was losing so much that my nurse Cécile called the doctor to take a look. By 1pm I was admitted to Tergooi Hospital in Hilversum. They are flushing my bladder with saline solution and they gave me two packs of blood to treat my anaemia. I spent the night here and have to stay here until they stablize me and find out what the cause is. It is always scary with the cancer, as many scary options could be the cause of my problems. By last night many tests were run. The scariest scenarios were tested negative. It looks like my pain medication is causing the trouble.
I have to say that they are very thorough. Last night I was given a transfusion of leucocytes and today I have been given 2 packs of blood. I am starting to feel much better. More info later!

Kill the Beast III

And the battle continues. Dr. Lips and Dr. Dahele haven't given up on me. Today I am going to the hospital to start with the new treatment plan.
I will be having radiation therapy to my sacrum, my rib and my left arm. These being the first treatments that are supposed to slow down the all-round deterioration but mostly to tackle the pain.

I am also having an MRI done of my head to monitor the skull.
Then last, but not least, I will be meeting Professor Boven (oncologist) to discuss the possibility of chemo and/ or experimental therapy with Everolimus.

Sometime this week I will write a very detailed account of my physical state.

Will be home tonight! Let's hope the ambulance doesn't take forever.

#happytwewyear

Well made it again! 2011, who would have thought that on April 30th 2007? The doctors thought I would have months to live and basically did everything to ease pain and discomfort.

Since then I have been into Rehab 4 times, have had a 3 year relationship, launched my company, made numerous trips and most important of all....seen my 7 year old Kiara turn into a teenager.

How is this possible? I think the answer is FOCUS. I have focussed on my goals: what, how,where,when,and with whom do I want to do things, and how do I want things done.

I have been known to be a real control freak and have been given names like The General, The Boss, Schwarzkopf....etc. I really hated it and felt like people misunderstood me in the past. It hurt. I always heard the negative undertone. Yes, I am in control of everything that I do and I try to drag my environment along in my wake, but I dare say my intentions were always noble. I wanted the best for everyone.

It is this control that has gotten me this far, if only it were because I have been able to avoid scarry mistakes due to lousy communication in the hospital.

So back to the FOCUS! For this year I have set 3 goals which I intend to target with military precision.

1. I have to make it to Kiara's 12th birthday (19-07-1999) so that she has a say in where she wants to live if I die.
2. I have to be around when Kiara starts Highschool.Gotta see that! Who wouldn't!
   
3. I have to make it into my new home at the Entrada.

That's it! That is what I need to do!

3 years ago I told myself I was going to make it to Kiara's 10th birthday, I am not doing too bad I suppose.



I celebrated my goals yesterday on Twitter where I held one of my virtual parties yesterday afternoon. If you are interested follow the tag #happytwewyear on Twitter. You can also see my speech here. I'm afraid it's in Dutch though.

So seeing as FOCUS works for me, I wish all of you the very same. Please live your lives like they are going out of fashion, and be nice! How hard is that?

Buurtzorg

I can't help it but blood is thicker than wine. The only reason why I can stay home to be nursed is because Mom and Melvin are here and because I have a professional team of home nurses looking after me. The regular nusing companies are a disaster, but I have found one called Buurtzorg with a modern concept that works really well. Buurtzorg has small clusters of office units around the country. The clusters are made up of nurses, each one of them a freelancer with the full responsibility for clients from beginning to end. They cut a lot of red tape, saving time and attention for better care for their clients.
A Dutch news programme made an item about them and Buurtzorg asked me to participate. I did! And all of this in a week in which I really wasn't feeling well at all.

Though at first I had the impression that the item was going to be a diluted message, I have to honestly say that Buurtzorg looked pretty good on TV. It was fun to be involved in PR and Communications again.

Chech this out:

Nieuwsuur, Thursday 23 Dec 2010. Start watching at 15'50".

Christmas Eve 2010

I write this post with mixed feelings of sentiment. Looking back I seem to have gotten stuck in time somewhere at the beginning of the year. Kiara and I had had a wonderful Christmas last year, first with Marcus and his boys and also with my family. I remember us pledging that there would be a next year together. It was a happy Christmas.

Then the new year started in which Kiara's musical Amandla Mandela was in full swing. Despite a new pin in my arm I tried to go to as many of Kiara's shows as possible. There was one specific time that I felt so weak that I went to get my wheelchair in the intermission. I wondered if I would make it through her shows.

I did! I attended her last show in Sittard and my sister Angélique drove us. By the time we got there paralysis made it's entrance in my life. Tumor mass in my spine was damaging my spinal cord.
We drove straight from the show to the first aid and I was admitted to the hospital that day, March 28. Since then it's been an up hill battle trying to defy cancer.

It all came to a screeching hault last weekend which looking back now seems like an unreal dream. I was supposed to have an Iodine treatment but wasn't feeling well. There were problems with my bodily functions.

The cancer has progressed and a rather high level in the back, devastation is no longer postponable. As usual my inner radar told me something just wasn't right. After intensive diagnosis the neurologist told me that I am to expect to loose all functions from the bottom of my chestbone downward pretty soon. All my efforts to walk have flown out the door now.

As things go Mom and I got caught up in the medical carrousel last week. Tests were done, radiation therapy was given, meetings were held, my pain was managed etc. and eventually, for the first time, I was given a family room on the oncology ward. I couldn't help noticing that I was the liveliest patient there, not to be interpretted wrongly, because I was one of their worst cases. I would have never been given that room otherwise. It was comfy there and Mom was able to spend the night there with me. What happened in that room could best be described as private, I guess. I can't describe what happens between a mother and a daugther and how confusing that gets when your own daughter also comes by. The dynamics of caring, sharing, protecting, and wanting to ease the pain for each other are very complicating. Kiara visited on Saturday and we had our talk. It gets harder each time but she makes it easier for me with her incredible capacity to deal with tragedy. I am so proud of her level headedness, her intelligence, her ability to plow through a mourning proces. She uses maths and her favorite things for comfort. Focus somehow eases the pain. Kiara went home with the Kleps who took her into their home lovingly. She was OK. Mom and I spent another 3 days in the hospital. I underwent a radiation session and the Docs wanted me there for observation. I made use of the situation to have my first shower in almost 4 months. It was so nive to feel the water on my skin that the instant it touched me I cried. I cried for a good hour and felt so good afterwards. (The showering is lying down on a special showerbed).

I came home in a winter wonderland. My house looked like a fairytale cottage. I haven't seen this kind of snow since 1985. I remember that that year I had pain in my knees and that they had found week spots on my Femur. Could that already have been the cancer?
When I came home Mom and Melvin swapped shifts. I had come back as another woman than the one that left on Friday. We had no idea what we were into. Even all the nurses, physical therapist, and my GP were so blown away, that we decided to just go with the flow these two weeks to see where exactly we are at. We focussed on Christmas. We have to get it right this year. My home was the opposite to Scrooges... it was all but Humbug.

Life continues at number 1.

Speed post

Had radiotherapy done to TH5 and TH6. In the hospital to monitor swealing and to wait for a CT scan of S1. Then home on monday.
was also administered a bone fortifier by drip.













Mom is with me now and Kiara came to see me this afternoon.


Going through the motions

Dooms day, in the end, doesn't stay away

Today I was once again admitted to the hospital for an Iodine treatment. The past two weeks I have had a lot of body-functional complications and new types of pains. I have had to start to catheterize and am finding it difficult to control but also to feel bowel movement. I still have been managing to stand this week, but I was so winded. I thought at first that this was because of the new tumors in my lungs. The Dr. had called me to let me know that since July there has been a lot of spreading of the cancer going on. I went from a few nodules in the lungs to an amount that they weren't able to count any more. This in both lungs.

As I practiced my Physio more and more it started to hurt in the rib area. I thought at first that I was me straining my muscles, but by Wednesday evening I started to have a hunch that it was the same pain caused by the compression of the TH 6 vertebra that was operated on earlier this year. I called Lips and requested a meeting with a neurologist before I started any Iodine treatment. And that is precisely how it went down. In the afternoon they did some imaging in the MRI scan. I was in sooooo much pain because the vibrations of the sound were strumming my painful nerves for a good 30 minutes or so.

2 hours later Dr. Lips broke the news to me, together with Dr. Van Schie that there is progression of the tumors in TH 5 and TH 6 and that basically it is such a mess that they can't operate any more. They will try to do some radiotherapy on it to buy some time.
In effect this means that within days or weeks I am going to turn paralysed from the breastbone downwards. This means that I won't walk again, but it could mean that it will be easier to sit with vigorous paintreatment which wouldn't work with the previous situation.

From there on the expectancy is that my bodily functions in that area will slowly start to shut down. To make sure that I am understood I need to tell you that this is technically speaking the beginning of the end. Now to really confuse you...I have not been given a prognoses. My Dr. says he can't because my medical history shows that I have an exceptional way of getting back on top of things. And this factor is so determining that by giving me a prognoses based on the medical facts, he would be cutting me short. In another case with another patient, the patient would already have died 4 times, and given where I am at now, they would be told they have 3 to 6 months left. Personally, I am feeling like I have more. I have to see my baby girl to High school and I have an appartment to move into. In Dutch we say, weeds never wither...Oh well. Taking it from here.

How I feel? I feel devastated. I am not ready to give up on life. I have too many things to do, too many places to go, and too many people that I really need to be with. Telling your 11 year old child what is going on is the worst pain anyone can have to go through.
We had a huge snow storm here. I was lucky to make it to the hospital. I have never seen so much snow fall at once! Maybe heaven was crying frozen tears? After hearing the news Kiara had a huge snow ball fight with all her friends. Sounds like healthy therapy to me. Thank you so much the Klep family for loving my baby like she's your own. This night was not easy.

I don't know what the next period will bring and if I will find the time and energy to write. But if you don't see me here you can catch me on Twitter from time to time as it's easier to write in 140 characters for me. Look me up under @AishaHunkar or just simply click the Twitter button on this blog.

I do owe you two stories though....one about my TV appearance that is coming up, and one about #Twanniversary, my online virtual twitter anniversary party that was sooooo cool. Check out the #hashtag if you can read Dutch and have Twitter.

In the meantime I want to share a fragment of Radio DJ Anita Undercover's program on Future FM. Start listening at 12'30". I'm sorry, it's in Dutch.But it's about the way I use Twitter and how I inspire people to really LIVE. She says that I have mastered the art of using Twitter's capacities to the fullest an also to benefit my life.

Iodine again

Today I am off to the hospital again for a radioactive Iodine treatment. Back into quarantine. This time Mom is coming with me again. Should be out by Monday. But I have so much more news that I hope to write at least two more posts this weekend from my hospital bed.