Мгновение застывшее во времени

Нет ничего больнее для матери, чем видеть своего ребенка страдающим от серьезной болезни. Для каждой матери, которая услышала слова “Ваш ребенок болен лейкемией”, время застывает и вся жизнь меняется. Я испытала это сегодня.

Мой отец недавно лежал в больнице с сердечными проблемами. Сегодня утром я сделала свой рутинный звонок домой, чтобы спросить о его здоровье. Трубку поднял брат. Он явно хотел сказать что-то срочное, что-то очень важное. Через несколько минут бормоча и заикаясь, после того как я пообещала, что не скажу ничего родителям, он рассказал мне о том, что заставило меня оледенеть. Единственному сыну моей сестры был поставлен диагноз тяжелой апластической анемии – тип заболевания крови, когда ребенок нуждается в срочной трансплантации костного мозга.

Я стояла в оцепенении, на глаза навернулись слезы. В одно мгновение, ретроспективные кадры из всех моих детских воспоминаний появились в моей сознание. Мой племянник был пухлым как младенец, и мы все его очень любили. После замужества сестра жила в двух шагах от отчего дома, так что мой племянник часто бывал у нас и вырос у нас на глазах.
Моя сестра со своим мужем переехали в Россию в 2011 году, так же, как тысячи низкоквалифицированных мигрантов из отдаленных сел по всему Узбекистану. Изначально они оставили сына на попечение бабушки и дедушки (моих родителей), и уже летом 2013 перевезли в себе в Россию. Моему племяннику сейчас 12 лет, и моя сестра больше не смогла забеременеть за все эти годы. Представьте себе, как бы вы отреагировали, если бы вы получили известие о том, что ваш единственный сын болен редким заболевания крови; представьте, боль, которую бы вы почувствовали на себе; только представьте о бесконечных душераздирающих мыслях, о том через что проходит ваш ребенок и что он может покинуть этот мир.

Я быстро положил трубку и позвонил моей сестре в Россию. Я думала, как она справляется с такой бедой в стране далеко от дома , без семьи и друзей вокруг нее ? Услышала мой голос она не выдержала. Я только сказал, два слова: “Я знаю “, и мы тихо заплакали друг с другом по телефону. Без слов, только боль.

Через некоторое время, придя в себя, она рассказала о всех трудностях. Всю ночь 31 декабря 2013 года у Нурилло (мой племянник) текла кровь из носа. Частые кровотечения были  и весь месяц до этого. Из-за новогодних праздников больницы были закрыты, помимо этого моему зятю надо было дождаться зарплаты. Как все низкоквалифицированные мигранты, они не могут претендовать на бесплатное медицинское обслуживание в России и вынуждены пользоваться услугами частных врачей. Наконец, 6 января 2014 года сестра отвела своего сына в небольшую частную клинику. По результатам анализов крови врачи поставили ему диагноз анемия. Все бы ничего, но он перестал есть, не мог ходить и испытывал постоянную боль. Были сделаны повторные анализы, по которым ничего не смогли определить. На следующий день, 7 января 2014, было принято решение на сделать анализ образцов костного мозга следует. Результаты оказались страшнее, чем предполагалось – ему поставили диагноз “апластическая анемия”.

Но на этом их беды не закончились. Частная клиника была не в состоянии предложить какое-либо лечение и отправила моего племянника в Областную Детскую Клиническую Больницу города Екатеринбурга, Отделение Детской Онкологии и Гематологии. Как только сотрудники больницы узнали, что пациент является гражданином Узбекистана, они наотрез отказались принимать его. Было сказано, что лечение апластической анемии предлагается только российских гражданам, и они также не имеют права лечиться на платной основе в частном порядке.

Каким-то образом они узнали о враче, женщина татарка по национальности, которая работает в этой больнице. Она походатайствовала за них исходя из мусульманский соображений. Моя сестра плакала в трубку: “Только благодаря этой женщине мой сын жив последние 4 дня. И я не могу сказать, что тяжелее – видеть боль моего сына или непрерывные оскорбительные комментарии здешних медсестер. Они бросают разного рода пакостные комментарии, не обращая внимания на то, что  я сама уже наполовину мертва”.

Мой племянник был выписан сегодня утром (10 января 2014 года). Они больше не могли держать его в больнице, даже если бы мы заплатили за его лечение. Ему поставили диагнозом “апластическая анемия”. Сестра прислала мне результаты анализов из больницы. Я был в ужасе, просто глядя на них. Его костный мозг не производит достаточно клеток крови для тела: красных кровяных телец (эритроцитов) , чтобы нести кислород, лейкоцитов – для борьбы с инфекцией и тромбоцитов для остановки кровотечения. Далее результаты анализов моего племянника:

Результаты Норма Состояние
Лейкоциты 2,33 4,5-13,5 Тяжелое
Эритроциты 0,92 3,8-5,2 Тяжелое
Тромбоциты 18 142-424 Тяжелое
Гемоглобин 34 115-150 тяжелое

Моя сестра и зять вынуждены были уйти с работы, чтобы заботиться о сыне Теперь, пока не найдут донора для трансплантации костного мозга, Нурилло нуждается в  постоянном переливание крови и лекарствах. Они срочно нуждаются в деньгах на: поиск донора, на тестирование на совместимость, лечение, лекарства и уход. Я исследовал миллион веб-сайтов для оказания помощь, поддержки и финансирования. Я также прошу друзей, знакомых и незнакомых, но сострадающих людей оказать хоть какую-то помощь – будь то финансовая или информативная поддержка. Пожалуйста, помогите моему племяннику выжить – пожертвования можно отправлять через http://www.justgiving.com/nurillo
Пожалуйста, не игнорируйте это сообщение. Что бы вы ни сделали, как бы ни помогли, пусть Бог примет вашу помощь. Огромное спасибо за вашу помощь и поддержку. Я буду писать обновления, по  мере поступления.

Ниже приведены полные результаты обследований, в том числе анализ крови.

A moment frozen in time

Bismillah,

There is nothing more devastating to a mother than to see your child suffer from a serious disease. For every mother who has heard these words “Your child has leukaemia”, it is a moment frozen in time and life-changing event. I experienced one such frozen moment today.

My father has been in hospital with heart problems recently. I made my routine call home this morning to ask after his health. My brother picked up the phone. He clearly seemed to have something urgent- something very important to say. After a few minutes of muttering and stuttering, after I had promised that I would not tell mum and dad, he told me the news. The news that made me freeze. My sister’s one and only son was diagnosed with severe aplastic anaemia- a type of blood cancer where a child needs urgent Bone Marrow Transplant.

I stood speechless as my eyes welled up in tears. In an instant, the flashbacks of all his childhood memories came to me. My nephew was so chubby as a baby and we all loved him dearly. My sister lived two doors away from my parents’ so my nephew grew up in our house mostly. My sister and her husband moved to Russia in 2011, just like thousands of low-skilled migrant workers from remote villages of Uzbekistan, up and down the country. They left my nephew with my parents initially but called him over in the summer of 2013. My nephew is now 12 and my sister could never have another baby after him. And imagine how you would react if you receive the news of your one and only son having a rare type of blood cancer; Imagine the pain you would feel; just imagine to go through the torturing thought that your son leaves this world before you….

I quickly put the phone down and called my sister in Russia. I wondered how she is coping with such calamity in a country far from home, with no family or friends around her? Just imagine going through pain with no support system around you. As soon as she heard my voice my sister broke down. I only said two words “I know” and we were silently crying to each other on the phone. No words, just pain.

Then she started telling me how difficult it has been. My nephew’s nose was bleeding throughout the night on New Year ’s Eve. He had frequent nose bleedings in the past month. The hospitals were closed due to holidays and my brother-in-law was waiting for payday. As low-skilled migrant workers, they do not qualify for free health care in Russia and use private doctors when needed. They finally took their son in to a small private clinic on 6 January 2014. The doctors took blood results and diagnosed him with anaemia. But he stopped eating and he could not walk and was in constant pain. They carried more blood tests and could not identify anything. Then it was decided the next day, on 7 January 2014 that samples from bone marrow should be examined. The results were devastating.

But, you will not believe, there is something even more devastating than this. The small private clinic was unable to offer any treatment to Aplastic anaemia and transferred my nephew to Yekaterinburg Children’s hospital of Oncology and Haematology. As soon as they found out that patient was from Uzbekistan, they refused to admit him completely. My sister and brother in law were told that the treatment for Aplastic anaemia is only offered to Russian citizens and they would not be able to pay for treatment privately. Then somehow they got hold of this Tatar lady who works at this hospital as a doctor. She interfered for them on the basis that they too were a fellow Muslim. My sister was crying- “It is only because of that lady my son lived the past 4 days. And I cannot tell which is harder- enduring to see the pain on my son or enduring the dehumanizing comments of nurses here. They throw all sort of comments at me not seeing that I am already half dead.” My nephew was discharged this morning. They could no longer keep him, even if we paid for his treatments. He is diagnosed with Severe Aplastic Anaemia.

They have sent me the test results from hospital. I was horrified by just looking at them. His bone marrow is not making enough blood cells for the body: red blood cells (RBC) to carry oxygen, white blood cells (WBC) to fight infection and platelets (PLT) to control bleeding. This is the result of my nephew’s blood cell count as of today:

Results Normal to have Condition
White Blood Cells 2.33 4.5 – 13.5 severe
Red Blood Cells 0.92 3.8 – 5.2 severe
Platelets 18 142 – 424 severe
Haemoglobin 34 115 – 150 severe

My sister and brother in law both left their jobs to look after my nephew. Now, my nephew continuously needs to have blood transfusion and medication until they find donor match for Bone Marrow Transplant. They urgently need money for: donor search, compatibility testing, donor harvesting, medical treatment, medication and medical supplies, my nephew’s home and day care etc. I think I have researched gazillions of websites today for help, support and funding. I am asking for donations from friends too. Please help my nephew to survive by donating via http://www.justgiving.com/nurillo

I have full faith in God that He does not burden a soul more than a soul could bear. I have full submission in whatever Allah has destined for my nephew. I also believe you can help him to live a little bit longer. So,please do not ignore this message. Whatever you give, may God accept it from you. Thank you so much for your help and support. I will keep you all updated.

Below are his full examination results including blood test and cell count results I obtained from Yekaterinburg Children’s Hospital of Oncology and Haemotology. The results confirmed that he has Severe Aplastic Animea  and urgently needs Bone Marrow Transplant.

10 Creative Play ideas for kids 0-7

Bismillah,

Are you stuck for ideas to keep your children entertained and occupied on rainy days? Or perhaps you want to spend the school holidays in a more meaningful play which gives you a chance to bond closely with your child? I planned to write this post well before the holidays but as it happens so, it was meant to be published today. With few more days of remaining holidays, try some of these creative play activities with your children for hours of fun and bonding. No planning required and really does not take hours of preparation. You can stretch each one of these for hours if kids are still enjoying or keep as short as 5 minutes. Either way, it is fun, engaging and interactive for both you and your child.

1. Junk Modelling. We have a box where Safiyya collects all the packaging from everything and anything: cereal boxes, milk bottles, onion net bags etc. And although she makes things daily, occasionally we all sit together with our junk box, glue sticks, scissors and cello tape and everyone makes their own stuff. You can  your child in conversation: what are you making, how are you going to make it, why are you making etc? Good for oral development, verbal expression and logical thinking

 

2. Sensory Play session. Ok, this one is a bit messy but nevertheless doable. When we are out and about, my kids always collect things from nature: acorns, leaves, conkers, sticks, stones, marbles, flowers etc. Again, they keep these in their own plastic bags. They know they have to dry off leaves and flowers first before placing them in a plastic bag. That moment when you are so brave to embrace the mess and have some fun with kids, get these bags out, put some water, flour, paint, gluesticks, some Asian stick spices such as cinnamon sticks etc on the table and children will happily take the lead. This is their most favourite activity.

3. Play dough and Plasticine. No need to explain. All three of my children between the ages of 2.5-7 enjoy this for hours. Meanwhile, I can just get on with my own work. This activity requires the least supervision, unless you have really small child who may want to put it into his mouth. But Ibrahim has been playing as long as I remember and not once I caught him with a playdough in his mouth. But then again, his sisters are always there to help and watch him.

4. Display boards. Ask your child/children to make a display board for their own bedroom on a topic chosen by you or by themselves. If you have printed out the pictures and reminder words already, you can provide these and children will cut out, stick to a board and decorate. However, it is quite fun and allows children to use their own initiative even when you have not prepared anything. Just brainstorm the ideas for a theme/topic, agree on one mutually and give them the basic resources, cardboard box, colours, pencils, paint, coloured papers, scissors and pen. Sometimes just an A4 paper and pen would do too. They have to make a display board and hang on bedroom wall. You can change it monthly, bi-monthly etc.

5. Colouring/Painting/Drawing- no child can ever get bored of painting, right? The same in our household. They paint 3-4 times a week while colouring and drawing for hours is a daily thing.

6. Themed stamp sets/ Stencil sets. We have always had different stencil sets on different themes and kids always loved using them. I have recently bought a farm themed stamp set which has been a huge hit. Even I sit down stamping different characters and then colouring them in to make a farmyard or a house etc. I am planning on buying more stamp sets.

7. Constructive play session with wooden blocks/legos/foam blocks/jumbo threads etc. My children’s all time favourite as they never get tired of playing with these. Each time the box is out they invent a new game, alhamdulillah.

8. Story making and storytelling. You can have a set of pictures cut out of catalogs, newspapers and magazines. A child needs to make a sentence holding each picture at a time and the next sentence has to relate to the first. So, in a way, you are inventing a story about a set of random pictures taken from random places. Use their own pictures from when they were little to add a bit more fun. Excellent tool to develop creative writing skills as they will improve their composing and narration.

9. Indoor picnic. You have planned to take the kids out to the park or for a walk later but it keeps raining. Never mind, have an indoor picnic near the fire in your front room. Make it a teddy bear’s picnic just by inviting few of the kids’ favourite toys to an indoor picnic.

10. Role-play involving adults of the household. Sometimes when I am right in the middle of something very very urgent or important, such as baking breads for the coming week etc, Safiyya wants my attention and keeps winging. I have learned to quickly turn it into a role-play session where she becomes a mommy and I am her obedient daughter. I act as a daughter trying to help mom in baking and looking after the house. I try to display all the qualities I would like to see in her. Meanwhile, I am getting on with my work. This is only imaginary and involves a lot of talking on adults’ part. You may not always be up to it, but better than listening a child’s winging. This has worked on numerous occasions but sometimes children just want a cuddle. In that case, just sit down and give them a cuddle.