Kai’s Krusade

Update posted by Kailaidlaw161212 Kai Kai x On Jun 21, 2015

we just wanted to let everyone know how thankful and appreciative we are for every single penny, thought & gesture. This is a hard journey but Kai is amazing and continues to smile regardless what Mr Leukaemia throws at him.

Lots of love and plenty of hugs


Calvin & Pam x x

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Thoughts and prayers for you all ! I think about Kai everyday and appreciate you taking time out of your hectic days to update us on your situation. Big Hugs for all X ...Just want to see the big blue eyes happy and feeling healthy. Renee Teves Checking in from California !

Renee Teves

Update posted by Jun 21

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Update posted by Kailaidlaw161212 Kai Kai x On Jun 21, 2015

Today in the Sunday Mail there is a story about me in it!!

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Update posted by Kailaidlaw161212 Kai Kai x On Jun 01, 2015
  • Today I was in the ward I had to get IV meds, an echo & chats with my doctors. It has been pointed out this morning that I have a Port (under my skin) in my chest which I get chemo, blood etc through but it is a single access point. When I go to transplant I need a Hickman line (outside my skin) which has two access points so before my BMT (bone marrow transplant) I have to get a new line. I have actually lost track of how many lines I have had but it is in double figures! Big day tomorrow we go to Yorkhill in Glasgow to see the BMT specialist! Yikes! It's Scary! Ward 2 has been my second home since I was 8 months old that's nearly 21 months! The staff are my friends and I will miss them all millions!! ?? However I am sure it won't be long before I make lots of new friends. ???? We still have not got accommodation but going to see a place tomorrow and waiting on a few others getting back but we are struggling so please everyone keep us in mind. The new Sick Kids hospital is moving to the Southern General in Glasgow and it is chaos! Ronald McDonald accommodation is running behind, Clic is running behind schedule. However we have been assured that the Haematology ward will move on time and I will get my transplant as planned so should get an official date. The specialists will also tell mummy & daddy the risk factors again and what we can expect. Regardless we will go ahead with the transplant at the brand new sick kids hospital as I deserve a chance not matter how small. ?? I am a child warrior!!
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Update posted by Kailaidlaw161212 Kai Kai x On Jun 01, 2015

I would like to send a massive, huge slavery kiss to every single person that is helping fund raise for us. Mummy & Daddy have been so busy, stressed & anxious about everything and anything that they don't want people to think we are not grateful but we miss things. We are actually completely over whelmed with everyone's acts of kindness, love & support from family, friends & strangers. I am very blessed with amazing people in my life ??????

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Update posted by Kailaidlaw161212 Kai Kai x On Jun 01, 2015

It was a dramatic day yesterday at the hospital. We where at the hospital in morning for IV meds, blood transfusion & lots of blood samples that were sent away one to Canada for his immune system and the rest to London, Bristol & Glasgow.Then we had an unexpected meeting with Kai's doctors because Kai's counts dropped so quickly on Monday compared to last Friday's this alarmed us all. This was due to a very small dose 0.08 ml of oral chemo (quarter of his recommend dose) which he was only on for four days. Kai is neutropenic again which is dangerous for Kai for infections also as his marrow is so sensitive to chemo it needs to be replaced ASAP. We will not stop treatment and any chance no matter how slim is a chance. Therefore the powers at be have decided with guidance and input from GOSH & Bristol that they will do a bone marrow transplant in Glasgow in two weeks time.The experts throughout the UK say Kai is in a precarious position and too risky to wait until end of July for treatment down South. Kai could not get any more chemo because it won't fix him and would make him too poorly or his infections could take over and effect any future treatment or worse lose him. We have started looking for accommodation near the new hospital in Glasgow but struggling to find something as of yet but we have many friends and family looking. CCLASP and Kai's social worker are looking too. We have also informed Calvin's carers & social worker for all his equipment to be on stand by. Glasgow have us down for going through in about 2 weeks, we should get an official date on Monday but we are going when Yorkhill is moving to the Southern General which is a massive operation. We should be there the week after they move. So will be new for us all. We will feel like the new kids at school as Edinburgh Sick Kids has been home for nearly 21 months. Will be quite emotional on all aspects for us all. Kai has under 10% chance of surviving but that is better than we have at the moment if we stop treatment. Kai is still strong and fighting so we need to keep going for him & us. 10% is still better than nothing. Kai is amazing so he could be in that % so we have to believe in that. It is going to be hard and come with a lot of complications but that is nothing compared to losing him without trying. They think we will be there 6 months including time for complications but Kai is amazing so fingers crossed.Everything has changed last minute again. This journey is a roller coaster of emotions but to save Kai we need to move fast. We are stressed and hurting that we can't protect our boy but feel better decisions are made and quickly as time is precious now. We have some of the best people in the UK involved. We also have amazing friends and family. So please keep our little smiling superhero in your thoughts ??

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Update posted by Kailaidlaw161212 Kai Kai x On May 18, 2015

Thank you so much to every single person who has donated to my Fundraising page. I am completely blown away by the generosity of so many. You truly are helping make a difference in our life's so we can stay together as a family. The uncertainty is a massive stress for the whole family but it is effecting daddy badly so being able to be together at this crucial time in my life is priceless. You are all amazing and we are in awe of you all. We genuinely over whelmed by the love, support & kindness.

We are still unsure of the target as we are still compiling figures to cover transport, carers, wheel chair accommodation near the hospital, living expenses & treats for Me. We are also unsure how long it will be as it all depends on me. So please understand I am not just adjusting the target but so many variables.

I am sending lots of love and slavery kisses to you all, Kai & all my family x x

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Very Happy to Help in any way possible . The main thing is that you & dad get to feeling better as soon as possible. We all care about you ; - ) and together we can be a force to be reckoned with ! ! ! xoxo

Renee Teves

Update posted by May 19

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Update posted by Kailaidlaw161212 Kai Kai x On May 16, 2015

Thank you so much to everyone for every single penny that has been donated. We are truly blown away by every persons generosity and kindness. You are all amazing and truly are helping keep us together x

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Update posted by Kailaidlaw161212 Kai Kai x On May 15, 2015

We are having a problem with PayPal. The account has been temporarily suspended due to us hitting a target of ?2500.00 therefore flagged up under Money Laundering Regulations. This is crazy but we have to adhere too!

I spoke to a chap tonight and had to email proof of ID and address but just missed cut off at 8pm tonight but will be rectified for noon tomorrow.

Sorry for delay and thanks again for your patience.

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Update posted by Kailaidlaw161212 Kai Kai x On May 15, 2015

Sad Long Post!

My results from yesterday show that my bone marrow is still the same as two weeks ago and not flooded with leukaemia. However I am in a dangerous position as my counts are still too low to get chemo but doctors started me back on steroids and some other meds to keep it at bay. So I will be grumpy again

Susan and my other consultants have urged us to reconsider stopping my treatment to give me a couple of months of creating good memories and no hospitals but my parents can't do that. If I was really poorly that would change things but my parents cant and wont give up on me. As two months or so is not enough time to have with me.

Glasgow has said they cant take me on as I am too high risk & there I would not survive. They are a fantastic hospital with amazing staff but the position I am in they can't help. Great Ormond Street in London said they are willing to try an experimental transplant but all my treatment would be there and after care so will have to move there for a while. This treatment has a very low chance of working but they can't offer anything else apart from stopping treatment and making memories. Mummy & daddy need to give me that chance no matter how slim as I am a fighter and no one thought I would make it to this age. London can't do the transplant until July which means it is a dangerous time between now and then but have to hope I stay in this good position. Mummy asked if we could do it in another country but advised it would take just as long to sort out if not longer which makes sense.

I am so sorry to tell you this over Facebook but wanted you guys to know. Mummy was so poorly last night with migraine and sickness she had to rest and my parents needed time to talk and cuddle. My family have been amazing as always and pulled together. My Daddy is being strong but hard for him as stress makes his MS worse and our doctors have said that NHS won't pay or help with a wheelchair flat near hospital and careers for Daddy. Mummy will be in hospital all the time with me so daddy needs help but they told doctors we will manage as being without Daddy is not an option. We are a family and have been through so much that we will be together what ever it takes.

We are going to have to start fundraising a lot more and contacting papers too which is difficult for us as a family as we do like to keep things personal and try and get by obviously except for this page. Friends & family have been amazing and some have fundraised and some are in the process of fundraising. CCLASP are emailing and contacting organisations already to get help & info for us. We are truly blessed with fantastic people in our life's.

I am their priority and we have to do everything to give me a shot at living as I am a wee boy who desperately wants to grow up and keep giving slavery kisses. We are devastated but we have to try x

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Thoughts & Prayers are with you all in this difficult time! Please accept my contribution with hope for a better tomorrow! I have a godson named Jack who is three years in age. He sends Best Wishes. Stay strong little one! You may find the following information useful. Please read below: St. Jude’s Children’s Research Hospital To refer a patient to St. Jude, your child?s physician must contact a St. Jude physician. Parents who wish to have their children treated at St. Jude must have their child’s physician contact us by phone at 1-888-226-4343, by email to [email protected], or by using our physician referral form. Physician Referral Form Patient Acceptance Policy Why refer a patient to St. Jude for treatment?

Renee Teves

Update posted by May 16

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Update posted by Kailaidlaw161212 Kai Kai x On Apr 16, 2015

We were sitting this morning all cozy going to have a pj day and carpet picnic when the phone rang it was the hospital they called as my blood cultures have grown a bug. So we are back on the ward for a 24 hour stay. We are all Gutted x
Since on the ward I have had a temp, blood cultures taken from my port, blood taken from my arms as they want to check to see if this bug is all round my body or just at my line site and to have a blood transfusion in the morning. Now what will the next 24 hours bring?!

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Best wishes kai love from all the staff at lanfine unit

All staff All lanfine unit Astley ainslie

Backed with £82.00 On Dec 30, 2015

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Guest

Backed with £10.00 On Dec 22, 2015

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Hi Wanted to Donate this small amount of money to,Kai . We are a new development in rosyth and had a wonderful Xmas event last Saturday. We raised a small amount and would like to give it to this very worthwhile cause . Every penny counts. Please give our love to Kai and all his family we wish you all the love in the world from all at HILTON ROSYTH xxxx

Isobel Searle

Backed with £30.00 On Dec 21, 2015

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top man great achiement for a great cause

david graham

Backed with £20.00 On Dec 18, 2015

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Love to Kai and family xxx

Caroline Morrison

Backed with £30.00 On Dec 12, 2015

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From lots of fundraising at work, hope this helps get you lots of nice days out. From everyone at CAAS Offices in Rosyth.

SHELLY MCDONALD

Backed with £460.00 On Oct 14, 2015

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Guest

Backed with £100.00 On Oct 07, 2015

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Jack hemming sponsored walk donation. Keep fighthing strong kai! Your a little super hero. Much love from Charlene and Aaron xxxx

Charlene

Backed with £7.00 On Sep 17, 2015

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Pamela Griffiths

Backed with £10.00 On Sep 01, 2015

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Guest

Backed On Aug 28, 2015 Amount Hidden

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Kailaidlaw161212 Kai Kai x

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I am a two year old boy who wants to be able to play and grow up!! X

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