Kelsey and the Yellow KiteA book for children about myeloma

Childrens book V12 psd cover Nov 14 orange sub_Layout 1 15/12/2014 12:48 Page 1

This book is in memory of my dad Gordon Barbour.

He was a clever, silly, loving man with one extra thing – myeloma.

Thanks to family and friends' fundraising we have been able to help provide information

about myeloma for kids like you and me!

Love you Dad xxx

Kelsey Barbour

Myeloma UK is extremely grateful to the Barbour family for making this book possible through their fundraising efforts.

Kelsey and the Yellow Kite

Written, designed and produced by Myeloma UK

Illustrations by Christine Battuz

© Myeloma UK 2013

Kelsey is 9 years old. She lives with hermum, her dad, her little brother John (whois 6 years old) and their cat, Max. Kelsey hasbright red hair, likes doing things outdoorsand her favourite colour is yellow. Her bestfriend is Maria.

A couple of years ago, Kelsey’s favouritething to do on Saturdays was to go with herdad and Maria up the hill at the back of theirhouse and fly her yellow kite. Afterwards, her dad always bought Kelsey and Maria a sweetie on the way home.

Then, Kelsey’s dad started to say he was tootired to climb the hill to fly her kite. He keptcomplaining of a sore back too.

Kelsey tried not to be too disappointed whenher dad couldn’t go with her to fly her kite,because he looked so sad when he told her.Maria and Kelsey always found somethingelse to do on Saturdays, but both of themmissed flying the kite.

One day, after school, Kelsey’s mum and dadasked her and John to sit and have a talk withthem on the sofa. Kelsey immediately thoughtsomething was wrong because the last timethey did that, they were told their granny hadgone to heaven.

“As you both know, dad has not been feelingwell. He’s been really tired and has a soreback. He’s had some tests done and it turnsout he has something called myeloma.Myeloma is a cancer” said Kelsey’s mum.

“What is cancer?” asked John.

“Cancer is something growing inside thebody that it doesn’t need. It makes peoplesick” she said.

“Can I catch it from you dad?” asked John.

“No, you can’t catch cancer from otherpeople. Myeloma is not like a cold” said their dad.

“What is myeloma though – is it the same ascancer?” asked Kelsey. She found all the newwords difficult to understand.

Her dad explained:

Myeloma is a type of cancer. It is cancer ofthe bone marrow.

Bone marrow is a special soft part inside themiddle of your bones.

The main job of bone marrow is to make theblood that flows around your body and the cellsthat protect you from harmful germs. Cells arelike tiny Lego bricks that build your body. Thecells that protect you from germs are good cells.

Myeloma affects a type of good cell in yourbone marrow that makes antibodies to fightgerms. Antibodies are like little soldiers whichprotect you from germs. A germ covered withantibodies cannot harm you.

When you have myeloma, the myeloma turnsgood cells into bad cells. The bad cells onlymake one type of soldier which is totallyuseless and cannot protect you from germs.

The bad cells and the useless soldiers causeproblems such as making you have sore bones,making you very tired and making you get illfrom nasty germs.

Kelsey’s mum and dad explained that a special doctor would give dad strongmedicines to kill the bad cells and help himfeel better. Her dad said the medicines wouldhelp him feel stronger so that he would be ableto do lots of things with Kelsey and John againsoon, including flying Kelsey’s yellow kite.

“Once you’ve had the medicine will you becompletely better?” asked Kelsey.

Her dad explained that he would get betterafter taking the medicine, but that one daythe bad cells would come back and make himget sick again. So he said the medicinewouldn’t make him completely better.

When they heard this, Kelsey and John gotupset and started crying. Their mum and dadgave them both big hugs and held them tightuntil they started to feel a bit better.

Kelsey saw Maria at school the next day andtold her that her dad wasn’t well. Maria askedwhat was wrong with him. Kelsey explainedabout the good cells and the bad cells andthat because of the bad cells her dad wasfeeling very tired and had a really sore back.

She said he was soon going to get somemedicine that would make him feel better,though. Maria said she was happy to hearthat and gave Kelsey a hug.

Kelsey’s dad started to take some tablets everyday. She sometimes helped him count them out and got him a glass of water to help himswallow them. Sometimes her dad felt a bit sickafter taking the tablets but his sore back startedto feel better, which made Kelsey happy.

After a while, Kelsey’s dad told her and Johnthat he had to go and stay in the hospital tohave more medicine. John got upset when he learned he wouldn’t be coming home for a few weeks. “But why does giving you themedicine take so long?” he asked.

Their dad explained that he was going to havesomething called a stem cell transplant.

During a transplant, he’ll be given really, really,really strong medicine that will kill all the badcells. But the really strong medicine will also kill some of his good cells which means heneeds to stay in hospital so that the doctors can take good care of him.

Their dad also explained that the medicinemight make his hair fall out, meaning he’d bebald. Kelsey got upset at the thought of thisuntil he explained that it would grow back again.

“Can we visit you?” Kelsey asked. Her dadtold her that children weren’t allowed tocome to the hospital in case they broughtinvisible germs with them.

Kelsey and John tried hard to be brave aboutthis and gave their dad a huge hug and a kissand told him they loved him. Then he left forthe hospital.

By lunch time the following day, Kelsey wasfeeling sad. “I miss my dad” she told herteacher. “He went to the hospital.” “I’m sureyou miss him, but maybe you can call him onthe phone when you get home?” she said.

That evening Kelsey and John spoke to theirdad on the phone and then they both feltbetter. After, their mum suggested they shoulddraw a few pictures of their dad, some withhair and others without. This was really funand made everyone laugh.

When she knew her dad was coming homesoon, Kelsey decided to make an enormous‘Welcome Home’ sign for him. It includedevery colour of the rainbow, but had a yellowbackground because yellow was herfavourite colour.

Finally, Kelsey’s dad came home. Kelsey was alittle upset when she saw him – he was thin andbald and looked a bit grey. She was initially shyaround him until he asked her for a hug – thenshe threw herself into his arms. He soundedjust like her dad after all.

He absolutely loved his ‘Welcome Home’ sign.

He needed a lot of rest and often felt too sickto eat, so Kelsey and John brought him pillowsand magazines to read. At first it was fun tohelp but then it got boring. All Kelsey wantedto do was go with her dad and Maria up the hillto fly her kite, but he was still too tired.

He’d had the medicine, so why wasn’t hebetter now?

Kelsey sometimes got angry about this. Shefound that if she punched her pillow lots andlots until she started crying, she’d feel a bitbetter. Her mum was really good at knowingwhen she was upset and gave her lots of hugsand mugs of hot chocolate.

Now and then, Kelsey found her mum cryingin the kitchen. This was hard for Kelsey to seeand she didn’t know how to act. She did theonly thing she could think of doing which was to give her a hug and a kiss.

By Christmas, Kelsey’s dad was feeling much better and his hair was growing back. He took the whole family to the local Christmas fair and went on the big wheel with Kelsey and John. And on New Year’s Day, they went up the hill and flew Kelsey’s yellow kite!

When she went back to school afterthe Christmas holidays Kelsey noticedthat even though her dad was feelingmuch better, he still got tired easilyand got a lot of coughs and colds. One day, Kelsey decided to write a listof all the things she could do to help.

Last week, just before Kelsey’s 9th birthday,her dad went for one of his normal visits tothe hospital where he gets tested for the badcells. He came home to tell Kelsey and Johnthat the bad cells were coming back againand that he needed more medicine. Heexplained again about what myeloma wasand about the bad cells and the good cells.

“Will you be going away again to hospital forages?” Kelsey asked. “Not this time, Kelsey. I can just visit the hospital for a few hours at a time and get the medicine there. I won’thave to sleep there” said her dad.

Kelsey remembered her list and knew sheshould be brave. Her dad had explained that the bad cells would sometimes come back againand that he would then need new medicine.Kelsey wanted her dad to see that she wasbeing brave but she actually felt scared.

“Are YOU scared dad?” she asked. He gathered her up in his arms. He told herthat yes, sometimes he felt scared. Buteveryone feels scared sometimes – just likewhen learning to swim or ride a bike all byyourself for the first time.

He knew that thanks to the amazing doctors,nurses and their clever medicines, he couldnow look forward to tomorrow and thetomorrow after that and the tomorrow afterthat too, and not feel too scared.

“Let’s go fly your kite” he said.

This was exactly what Kelsey wanted to hear.

About Myeloma UKMyeloma UK is the only organisation in the UK

dealing exclusively with myeloma, a type of cancer arising from plasma cells which are

found in the bone marrow.

For more information visit www.myeloma.org.uk or call the Myeloma Infoline on 0800 980 3332

or 1800 937 773 from Ireland.

Myeloma UKBroughton House31 Dunedin StreetEdinburgh EH7 4JGTel: 0131 557 3332Email:myelomauk@myeloma.org.ukwww.myeloma.org.ukCharity No. SC 026116

Myeloma Awareness Week 21 – 28 June Publication date: September 2013