.

Our princess is now resting peacefully in heaven

2007-12-12T20:48:00.000Z

Katelyn Grace Benson

28th February 2002 - 6th December 2007

Thank you, precious little princess for sharing your love with us. Until we are reunited as a family in heaven, we shall be missing you and we will never forget you. We love you more than words could say.

Homeward bound

2007-07-04T12:54:00.000Z

After I get platelets, I'm going home tomorrow! Hip hip hooray. I am off all painkillers and I'm doing really well. The portacath is a big step up from mr wiggly woo the worm. I can't wait to get home and spend time with my little fishies. I'm having a week or two of treatment and it is a welcome break. With any luck, I will spend minimal time in the hospital and doctor's surgery.

Katie, xox

P.S. Can you believe it's July already???

Back in hospital

2007-06-28T12:57:00.000Z

I'm in hospital with a Hickman line infection. I am on antibiotics, paracetamol and I am very miserable. Daddy got me some lovely stickers but even happy smiley faces couldn't cheer me up. Due to the problems I've been having, we are going to pull the line and have a portacath placed (under the skin). I will keep you updated.

Good times

2007-06-24T16:09:00.001Z

I'm doing very well. The femoral line was placed without hitch. I am superwoman! My stem cells were collected over 3 days. I am generally feeling well. A proper update is coming soon.

Love you all,
Katie x

P.S. I have 2 fish, one is called Fill and the other is called Fiona!!

Monday monday

2007-05-28T14:50:00.000Z

It's bank holiday Monday so I am lucky enough to have both Mummy and Daddy at home. The weather is grim so we haven't gone out. We recently got a giant trampoline in our garden. It was from ebay! Josh and I stayed up till 9 pm waiting to see if we won the bid and we did, yay! I am having a femoral line placed tomorrow in preparation for the stem cell harvest. Think of me as we have to get up at 5am! My haemoglobin was down to 7.9 so I had a blood tranfusion yesterday...my first in a while. I'm keeping well and looking good. Sally, our new nextdoor neighbour has promised us a little fishy. I can't wait to have my very own pet. I am going to call him Fill with an 'F'!!

I'm a little ballerina

2007-05-26T11:48:00.000Z

I spent the week with Mema and Mummy at Mema's house! That's why we didn't get a chance to update. I've been having GCSF injections in my leg to prepare for the stem cell harvest. Sandra is taking me to see Lilly's ballet show this afternoon. I am so excited. I had my ballet lessson this morning so I'm still in my leotard which I'm going to wear to Lilly's show! Then, we are going out for pizza.

More fabulous news

2007-05-16T14:49:00.000Z

Mummy and Daddy met with Dr. Ainsel on Monday and there was some very good news. My bone marrow and trephine are neuroblastoma free!!! For the next stage in my treatment, I'll be having my stem cells harvested. I will keep you updated. :-)

Fabulous news

2007-05-13T13:41:00.000Z

My hair is growing and I am gaining weight. I look and feel awesome (if I do say so myself). I had my CT scan and MIBG scan. I am stable which is great news. The preliminary results from the bone marrow tests look pretty good but we'll know tomorrow when Mummy and Daddy meet with Dr. Ainsel to discuss the plan of action. My attendance at school has been really good and I am thriving. All is welll with the Benson family. Thank you for checking in!!

School days

2007-05-03T09:39:00.000Z

Dr. Marcus said my ultrasound scan looked good, my bladder is fine. I will be having a kidney function scan soon. We should know, by next week, the official results from the scan and x-ray. I got a Bob the builder sticker for being such a brave girl. I wanted a Barbie one but Nurse Kathy said they'd run out. I really like Nurse Kathy. I remember her from the first time I was in hospital when I got diagnosed with neuroblastoma.

I am eating really well. I had a bowl of weetabix for breakfast before school. I always meet Maddie in the playground and we go into school together. Miss Elsie tells Mummy that we always sit next to each other at lunchtime and we play together at breaktime.

I am a busy bee!

Katie's morning sunshine

2007-05-01T08:26:00.000Z

Good morning! I slept really well last night, so subsequently I am feeling very chirpy. I am off for my pelvic and renal ultrasound scan and an abdominal x-ray. I have told Mummy and Daddy that I am going to be a doctor when I'm older so it's very important for me to be specific with the medical lingo. :-) Fortunately for me, my Daddy will be taking lots of books to read to me. Joshy is at school, Mummy and Sophie are staying at home. After the hospital, they'll take me to school and Daddy will go back to work. Have I bored you enough??!! Love, Katie XOX

2007-04-30T09:42:00.000Z

A big hello to my family and friends.

Here's a little update from, me, Princess Katelyn. Mummy is awful as this updating malarkey so I'm giving it a go. I probably spend too much time on the computer as it is but what's an extra 20 minutes here and there? February was a busy month, I had all my tests and scans and I turned 6. I had a very big birthday party and all my friends were there. I have also become a pill popping champ. You should see the size of them but I'm brave, I can dooooo it! This is my 3rd round. I am feeling really good right now with minimal pain. I am being a cheeky little devil, playing and fighting with Josh and Soph. Mummy and Daddy say 'hi'!!!

Love, Katie
(and typist Mummy)
XOXOXOXOXO

Here is the promised PRINCESS KATIE update

2007-03-19T16:56:00.000Z

Katie underwent the disease re-evaluation process. The result? Stable disease with minimal improvements. The cancer in her bone has shrunk by 2mm and the other 'spot' is about the same size. Bone marrow biopsy was positive but the aspiration was negative. She has been started on an oral chemo, Temozolomide.

Not-so-little Sophie is crawling! She's at the stage where she adores putting things in her mouth. Last I heard were screams that she was eating the remote and Katie wanted to watch DVD. Oh the joys of parenthood :-) Joshua is thriving at school. He had a new haircut after his 'best friend' decided he wanted a go at playing with squiggly scissors. Mum was NOT impressed, let me tell you that!

Happy 4th birthday to our dear friends Samantha and Kahlilla <3

More news coming soon (this is the brief summary).

Finally we got onto blogger!!

2007-03-19T16:53:00.000Z

For ages we have not been active on the site or emails so please accept my hugest apologies. I am in the process of writing an update which I'll get done VERY SOON!!

End of week news

2007-01-26T20:58:00.000Z

Katie started another round of topo/cyclo chemo today. Her counts were good enough, yaaaaaaay! I am pleased to say she has gained another kilo. We have been giving her build-up drinks and thankfully she isn't looking so skinny these days.

Both the other two are ill. Poor Sophie has an ear infection, she is not a happy bunny. Josh has a cold and 'big dark pain' in head. They're both having some rest and recuperation at Mema's house.

Congratulations to Lou and Derek on the birth of big baby Mason (9lbs 8oz!!!). We can't wait to meet him!

I promised to update more regularly

2007-01-18T22:32:00.000Z

Bloods counts have taken a plummet. Katie received platelets today at the outpatient clinic. Her potassium levels were low, so she received a potassium infusion too. Neutrophils are down to zero and we are just waiting for her to spike a temperature. She did appear to be running a very low grade temp but an hour later (and another hour later) it was still reading as normal. Katie is feeling pretty rough so she's getting lots of attention and paracetamol. We are vigilant with the doseage this time. No more getting weight conversions confused (it affects the dose being administered).

I really hope some of this made sense. I am so tired, I can barely keep my eyes open. If I owe you an email or a phone call, I promise I'll get round to doing it over the weekend!

A whole month...

2007-01-15T13:43:00.000Z

My resolution is to update twice a month. I'm getting so bad at this, please accept my sincerest apologies!

Katie had another round of TVD chemo which started a few days after Christmas. She was in-patient for the entire week due to some kidney issues. Fluids were flushed through after the topotecan infusions. Further cause for concern was a urinary tract infection which recently appeared. It was a little surprising as the fluid flushes were to re-hydrate Katie's body and she's had urine infections usually after a period of dehydration. Next month she'll be having a kidney function test. We are growing increasingly concerned that her kidney is being damaged from the chemo and we just cannot afford for this to happen.

On a happier note, despite being in hospital over new yrs eve, Katie felt good enough to pop some party poppers and have some champagne (lemonade really...incase you're thinking I am encouraging underage drinking!!!) Christmas was so long ago already. What to say? Kids spoiled rotten...lots of food...lots of toys...lots of wrapping paper....lots of mess!!

Can't believe it's 2007 already, time flies..............

Christmas festivities

2006-12-16T00:50:00.000Z

We get to spend Christmas at home, yay!!! Providing all goes to plan, Katie's next round of chemotherapy (TVD this time) will be on 28th December. She tolerated the new chemo combo very well and had hardly any sickness. Her counts are still very low but we've done blood tests every day this week and are seeing a small upward trend. I expect it shall be another quiet Christmas for us, although, a house with 5 Bensons is never exactly very quiet. This time last year we'd just got home post-transplant. Katie has come a long way since then but her struggle is far from over. Praise God she is so much stronger than all of us put together and takes this all in her stride.

It's been busy busy busy for all of us inbetween the hospital visits and I even braved the shops a few times. Josh finishes school this week, and Jason is taking 2 weeks off work. Our not-so-little Sophie is holding her head steady. She's so strong, hold her upwards on your lap and she'll kick you hard and push up. They're growing each and every day.

"You can call me Katie again"

2006-11-28T12:32:00.000Z

The appearance of new cancer has shocked and devastated us all. Like the spot on her abdomen, it is only visible on the MIBG scan. No abnormalities showed up on the x-rays that Katie had a while suffering from shoulder pain. After the round of scans and tests, Katie had a detailed MRI scan and it was negative. The MIBG is specific for neuroblastoma and more sensitive to the 'lurking' cells. For this reason, we have added a new drug to the concoction. We will alternate 2 rounds of Topotecan/Cyclophosphamide with TVD and then re-scan. Yesterday, Katie started her first round of topo/cyclo.

I will update again properly later in the week - Sophie is screaming for her next feed.

This is a difficult one

2006-11-20T21:46:00.000Z

I put off updating until we had a clearer picture of what was going on. A new lesion was found in Katelyn's humerus (upper arm). I noticed it very brightly while sitting in on the scan and shed many a tear but tried to push it to the back of my mind - as Jason says - I am not a trained radiologist. Unfortunately the results did confirm new cancer. This would most likely be the cause for Katelyn's shoulder pain a few weeks ago. I just knew something was wrong, call it mother's instict. The 3 cm 'spot', which was visible on the MIBG scan at time of relapse, remains unchanged. However, once again, the CT scan was negative. We were in this position in June - a small artifact was seen on the MIBG but not CT scan. By September, we knew this artifact was a tumour because it had increased in sized. The bone marrow aspiration was negative for neuroblastoma. However, the bone marrow trephine biopsy result showed there was still neuroblastoma present in the core of the marrow. So there we have it, a mixed bag of results. Certainly not the results we were hoping for. The neuroblastoma team are discussing Katelyn on Tuesday afternoon. It seems as though we may press ahead with a few more rounds of TVD and then see where we are from there. Meanwhile, we have not closed any doors to other treatment options. This has been so very difficult to write. Please pray; for me and for Jason to be guided towards making the best decisions for Katelyn, for strength for our entire family and for nothing less than a complete earthly healing for our beautiful daughter.

Long day

2006-11-08T20:39:00.000Z

I haven't been able to log onto blogger for quite some time. I am adding updates from this week below this one. Please scroll down to read the events of this week.

Katelyn's platelets were down to the 50s - low! How could we not have noticed? Usually she has a nose bleed when her platelets are so low. The outpatient clinic was heaving today, have never seen anything like it! We ended up spending the better part of 8 hours there for a short platelet transfusion. It was extra bad luck that Katelyn had a bad allergic reaction (she's had these before) and broke out in a nasty, itchy rash. They've added another anti-histamine to the pre-med concoction. Whilst in the clinic we met up with our buddy Matt who's having treatment for Leukaemia. He finishes treatment next week, congratulations Matt!! The O'Neill family have been good to us. The protocol for ALL lasts over 3 years for boys...3 years....can you imagine? I feel we are already dragged down by Katelyn's treatment, its *only* been 18 months and the finishing line is not yet in sight. We have MIBG scan, bone marrow tests and CT scan next week. Please keep those prayers coming our way!!

School days (Monday 6th)

2006-11-08T20:36:00.000Z

How many 4 year olds do you know that can handle 48 hours of chemo and still be well enough to attend school the next day?

Katelyn went to school today from 11:30 a.m. until 3 p.m. and she had an awesome time. She cried a little bit when I dropped her off but by the time 4 o'clock rolled around, she didn't want to leave. Daddy had to prise her little arms away from Teacher Toni's neck! After a flying visit to Starbucks for a 'chino, Katelyn fell asleep in her carseat and has been sleepy all night. She hardly touched her meal - only ate 1 fish finger and NO peas - that was very surprising because we all know how much Katelyn loves her vegetables!!!! Right on cue, Katelyn perked up as soon as she heard the words "BEDTIME" and chattered away to me about her day at nursery for a good 20 minutes before she fell asleep WITHOUT her dummy. That's the first night ever! Poor kid wore herself out. Psst don't tell Daddy...he thinks I worked my parenting magic and got her off to sleep without the dummy....when really I should take credit as miss Katelyn did it all by herself. It was fantastic for Katelyn to have a 'normal' day =)

Freeeedom (Friday 3rd)

2006-11-08T20:33:00.000Z

Katelyn is enjoying her freedom in the hospital playroom. The IV, which was running the antidote to the paracetamol through her veins, has finished. They allowed her to be unhooked for a while before they start the dose of Topotecan. Then we have a long and difficult weekend ahead - 48 hour chemo!! :-( Last round knocked Katelyn for six. It's a shame, she had a good burst of energy today. These are such precious moments, we cherish them dearly.

Nightmare (Thursday 2nd)

2006-11-08T20:32:00.000Z

We are inpatient on the ward. Katelyn has been given an accidental overdose of paracetamol. It wasn't a serious nor life threatening overdose. It wasn't anyone's fault, just 'one of those things' but it was 'one of those things' that Katelyn didn't need to go through. As a precaution, they have administered the IV antidote to paracetamol. Ever have those days when you want to curl up in a corner any cry? This is one of those days....

The most important thing is that our Katelyn is fine. She's so brave and resiliant. I need to take a leaf out of her book.

Halloween (Monday 30th)

2006-11-08T20:30:00.000Z

No our digital camera battery did NOT decide to die just as we had the kids all dressed and smiling sitting on the couch waiting patiently for their photo shoot!! Murphy's law, hey?! ;-)Joshua, Katelyn and Sophie looked adorable. I wish we had photographic evidence but we ended up using a disposable camera so at least we have photo memories, even if we are unable to share them online.

Katelyn slept through today's infusion of Topotecan and, longer, because she needed extra fluids. Her favourite nurse Sally was dressed up wearing a witches hat and she read stories but Katelyn snored away! Can't really complain at all because she's feeling fantastic.

HAPPY HALLOWEEN!!!!!!!!!!!!!!!

Quick update

2006-10-29T22:24:00.000Z

Blood counts are high enough for round 2 of TVD chemo to start tomorrow. Thank you Lord!! Who would have thought we'd be happy for our daughter to be granted permission for toxic drugs to circulate through her body? We are praying this treatment will eradicate every last cancer cell - fingers are crossed for a miracle earthly healing. We have faith in Katelyn.

We hope you all had a good weekend!! xoxo

Oi, Katelyn!!!!

2006-10-26T20:34:00.000Z

Important news!! Katie has decided she would like to be referred to by her 'grown-up' name. The cutesy little nicknames; Katie, Kate, Katers, Kitty Kat have gone out the window. Our Katelyn is now ready to be grown up, apparently. She is four going on fourteen!

We spent a long day in the outpatient clinic while Katelyn received a blood transfusion as her haemoglobin had dropped to 7.9 (very low). She also had another x-ray of her shoulder as it's still bothering her. Again, it showed nothing. We are hoping it is not disease progression. The doctors don't seem overly concerned, but we are, I shall be keeping a close eye on the monitor during the next MIBG scan.

Josh has been going through a bit of a naughty stage and I have been reminding him to not shout out 'hey' when he wants someone's attention. I always say; hay is for horses, not for people. Last night, he shouted down the stairs 'oi Mum' and I replied that I was feeding Sophie, and not to use impolite words. At which point, Katelyn pipes up, in her best adult voice 'Joshuaaaa, oi is for horses'!

Sugar, spice & all things nice

2006-10-23T18:26:00.000Z

"If a mother's tears could heal cancer, you'd be cured."

My beautiful Katie has been in a very loving mood lately. She climbs on my lap wanting to be kissed and cuddled. It's always lovely, although it can be a tad inconvenient i.e. when I'm trying to feed Sophie, help Josh with his homework and cook dinner all at the same time! Everytime I think of saying 'no', I only have to look at those beautiful big eyes and my heart just melts. Every single day with this child is precious. The small things in life can't wait. My children come first, always. Besides, I'm a woman and us women are renowned for our multi-tasking skills.

Our weekend was quiet, well as quiet as you can expect with 3 children under one (small) roof. As I mentioned on Friday, the Hickman line was pulled. She's now had 2 line insertions in as many months. Katie was supposed to have started the second round of TVD today but her counts were not up to scratch. White blood cells, haemoglobin and platelets were low - not enough to warrent any transfusions but it may be on the cards sometime in the near future.

Please keep on praying for those counts to rise!! P.S. Seeing as she has a lot of love to share, Katie sends many kisses and cuddles.

Who needs hair anyway?!

2006-10-20T11:30:00.000Z

This is the first day that Katie has felt pretty good. I thought it was worth an update. She is hungry and eating loads, an appetite developed out of nowhere! Hopefully she is gaining weight as she need some meat on her bones. We were very excited to learn that Katie has grown an entire centimetre. As some of you may know, chemo and radiation stunts the growth so every little centimetre counts. Ok so she was never going to be a 5'11 catwalk model with parents this height, but it's fabulous to know she's growing!! :-)

The news from the last week; due to a double lumen infection in her Hickman, they decided to pull the line. She was supposed to have another line inserted this morning but the operation was pushed back to this afternoon. (We are hoping to come home this evening.) Dr Ainsel isn't budging and was insistent that it was to be yet another Hickman, as opposed to a port-a-cath tunnelled under the skin. Katie's had two x-rays this week. One was to check her veins to ensure all was well enough for another Hickman insertion. The other was due to persistent shoulder pain. She was holding her left arm in a funny way, it was limp next to her body and her shoulder was drooping. They were slightly concerned she had, somehow, disclocated her shoulder, but fortunately all is well and it looks like muscular pain. Our dear friend, Charly, yet again, made her prescence very welcome and offered her massage services. Lovely!!

Katie is practically bald minus some peach fuzz and her eyebrows. I'll be terribly sad when her beautiful eye lashes start falling out again. But, as we told her, we think she is beautiful.....hair or no hair!

Before I go, I wanted to wish everyone a good weekend. Please pray for miss Katie's blood counts to rise in order for her to start the next round of chemotherapy. Thank you!

Unlucky

2006-10-13T21:50:00.000Z

It's been so long since I updated, I had to rack my brains to remember my password. The computer chair is nearly always occupied by Joshua on the Sims, or Katie on the Barbie website. Friday 13th is an unlucky one. Katie is in hospital with a high temperature and an immune system of basically zero. Haemoglobin was 9.0 (good) and platelets are back up after a transfusion. We believe Katie has some kind of Hickman line infection - sound familiar? When they are able to indentify which strain of bacteria it is, they should be able to administer a more specific antibiotic. As of an hour ago, Katie's temperature was down & she had another dose or oral paracetamol which is subsiding the throbing pains in her head. Quick thank you - to Emma and Tim for sending us a batch of different pink hats. Katie was getting really irritated by the itchy clumps of hair in her bed. I will email a few photos of her in the hats - she put 3 hats on at once, it's funny!

It's a rollercoaster

2006-10-10T20:50:00.000Z

Not a great deal to report. Katie has been eating and sleeping well, so her energy levels are good. Pain issues are up and down. She woke up this morning with puffy and swollen eyes. The other day she was limping a bit, she's quite good at hiding these things. Bless her heart, Katie was trying to run after Josh dragging her leg behind her. It's always scary not knowing how the disease is progressing inside her body. All we can do is continue to pray that the chemo will hold her disease stable. Blood counts are following a certain trend, looks like a platelet transfusion is on the cards. Today her platelet count was borderline, but they've been dropping. We are keeping a careful eye out for any bleeding issues.

Other than that, things are relatively peaceful in the Benson household, if not a little exhausting, as Sophie seems to have created her own sleeping schedule. She wakes every 2 to 3 hours during the night for her feed but will sleep for around 4 to 5 hours during the day. The health visitor seemed to think she is soothed by the 'noise of the day' - whatever that may be! Katie and Josh aren't big fans of Sophie's sleeping times either. "She's not awake when we want to play with her!!" However, when she is awake, she reveals a rather cute toothless baby grin....adorable....it's worth it!!

This is what we have decided for Halloween
We aren't very good at finding a 'family' theme and sticking to it!
Mummy - Dorothy from the Wizard of Oz
Daddy - Pirate
Joshua - Spiderman (as if you were expecting something else?!)
Katelyn - Finding Nemo (we're still thinking about this one....)
Sophie - Bumblebee (thank heavens she's too young to protest!)

Please keep those prayers coming our way for miss Katie and, of course, the other brave cancer warriors. Good night and god bless....may angels watch over you tonight, and everynight......

The Royal Princess

2006-10-06T16:54:00.000Z

I would like to say a huge thank you to Charly who took time out her busy day to give "Princess" Katie a manicure and pedicure, she loved it!! After inpsecting her beautiful nails, she decided a dress-up session was in order and spent a good hour rooting through Mummy's wardrobe! She is now sitting patiently waiting for The X-Factor to start wearing my 6 inch (hehe!) black stilettos and my (very expensive!) pink cashmere shawl. Very glamourous indeed :-)

It's good to see Katie feeling a bit like her normal self. She's still in considerable pain and is terribly pale but has most definitley turned a corner. There were moments earlier this week when I wondered if we were doing the right thing by choosing such an agressive treatment option. But Katie is a tough girl and she's fighting through.

We are sitting and waiting for her blood counts to recover over the next few weeks in order to start a second round of TVD. I will update later in the week.

Tired tired tired

2006-10-04T21:44:00.000Z

The first round of TVD chemo is done and dusted. Now we sit and pray Katie's blood counts will remain good enough to not cause a delay with the second round. Katie had a tough weekend hooked up for over 48 hours. She's been in a lot of pain in her abdomen where the cancer is situated. Also, she's been complaining of pain in her legs and hips. It's scary, really scary. They started her on slow-release morphine which helped ease the pain and allowed her to sleep well. We are still in the hospital trying to get her pain under control.

We've been feeling a bit sad and miserable lately. The harsh reality of the situation is kicking in and we are all feeling it. Please keep praying for our strength during these difficult days. Thank you!!

More chemo...

2006-09-28T10:49:00.000Z

Katie continues to amaze me on a daily basis. Last Thursday she insisted upon going to school, and with her, took her babydoll who has her own "wiggly line" to show the children in her class. School have been very supportive and understanding, and are prepared to work with us so Katie can still have as much of an education as possible.

The surgery to re-insert another Hickman went without a hitch. Within a couple days, she had fully recovered and was running around like normal. We were hoping she may have a port-a-cath which would allow her to swim and would give her more 'freedom'. Unfortunately it wasn't to be, but we went a year looking after Mr. Wiggly, we can cope with a little while longer.

The TVD protocol has been started. Katie receives the drug, Topotecan, on an out-patient basis. After today's chemo, she'll be admitted to the ward to receive the Vincristine and Doxorubicin as in 'inmate'!! Poor Katie has been sick every single morning on the way to the hospital. Her platelet count was down and she had a nose bleed which upset her terribly. For such a young child, Katie has a huge awareness of what's going on around her. We try and not be negative about the relapse although, to be honest, I feel like crumbling.

Sophie is growing growing growing. She's already out-grown most of her newborn clothes. Only a month old, but already a huge part of the family. It's as if she was always here. Her sweet little innocent face is another reason to wake up every day and thank God for we have been truly blessed. Joshua is fine, he's wonderful, happy and supportive. He's been through far too much for a boy of 6, but he's a tough one, and acts the 'man of the house' mostly for Katie's benefit! It's very cute, he's bossy but I tell ya, she can give as good as she gets. Heaven help us when Sophie's old enough to 'play their games'.

Thank you for the endless love, support and prayers.

Heartbreaking

2006-09-20T22:20:00.000Z

I am not normally at a loss for words but lately I have been, please bare with me. Incidently, today is one year since the surgery where Katie's "big tummy" tumour was removed. I'd like to be able to share some good news about how far she has come since then but, really, this past week has been nothing but heartache. All the plans for Katie....going to big school and starting ballet lessons and even attempting tap dance lessons....have gone out the window. We are re-writing the plan, hoping to incorporate as many good things as possible into Plan B. What is the Plan B? Still, we aren't 100% sure, nothing is concrete when you're talking about the dreaded "r" word. The survival rates for relapsed neuroblastoma are grim. We are concentrating on a good quality of life for Katie and, please God, a life that is as long as possible, pain-free and fulfilling. After many lengthy and emotional discussions, it has been decided Katie will receive the TVD protocol. TVD stands for Topotecan, Vincristine and Doxorubicin - it's an intensive chemotherapy protocol administered with wider gaps between rounds than the front-line chemo regimen. This does mean Katie will have another Hickman line insterted in her chest, this does mean she will require regular medications and blood/platelet tranfusions, this does mean she will be prone to infection, this does mean she will not be able to attend school and dance lessons like other 4 year old girls but this does mean we are giving the cancer a nasty kick up the backside. There are few treatment options available but if this route is not the right one for Katie....well.....let's just say I still have a few more tricks up my sleeve.

Katie's operation to insert the Hickman line is on Friday at 9 a.m, it's only a day procedure and we should be home by the evening, free to enjoy the weekend. The first round of TVD starts early next week. Our prayers start NOW, we have not given up on that miracle!

We may have lost the battle but we are going to win the war!!

*********************************************

Please keep Christi Thomas' family in your prayers. She is now heaven's newest angel. Those in the "NB world" will know the Thomas Team were such an inspiration to us all. God bless Angel Christi and all of our babies who are fighting for their lives.

*********************************************

P.S. Happy (belated) birthday to Jason. You are the BEST husband and father we ever could have wished for. Thank you for being my rock of support during these dark days.

Katie has relapsed

2006-09-15T20:55:00.000Z

The "honeymoon period" with baby Sophie has been cut short by some crushing news. Katie has relapsed. The three most awful words I've ever had to write. The spot which was visible on the MIBG scan has increased to 3 cm. Back in June, it appeared Katie's CT scan was negative but the latest CT scan very clearly shows a cluster of tumour cells. If that wasn't bad enough, we learned that Katie's relapse is not isolated as she has bone marrow disease. This is devastating news. Obviously we fully knew the high relapse rate but this has hit us like a tonne of bricks. Jason and I are meeting with Katie's consultant to fully discuss the options. We have not told Katie or Josh about the relapse and we'd appreciate it if no one would mention this until Jason and I have had a chance to discuss it with them.

Please pray for Katie, and for us to make the best possible decisions regarding her treatment. Please also pray for the other NB warriors especially Christi Thomas who is nearing the end of her brave 4 year battle. There are NO WORDS to truly express how we feel right now.

Oh baby, our "big" girl

2006-09-04T14:07:00.000Z

Sophie is a beautifully behaved baby and we are overjoyed to have her here safe and sound. It's taking me some time to recover as I had an emergency c-section but I am fortunate enough to have a lot of support from family and friends. Katie and Josh are 2 extra pairs of hands who love to help. Katie adores being the big sister (finally!), and is always checking on her while she sleeps. It's adorable. Both children have adjusted very well and there isn't an ounce of jealousy.

Today was a monumental day in all of our lives as Katie has swallowed her last accutane pill! The thought of being off treatment is both exciting and terrifying. It hasn't really hit us yet, we are just waiting for the scans to be over in order for us to breathe a little easier. The hospital have arranged it (as much as they can) so that Katie won't miss too much school. Yes, that's right . . . .

Katelyn Benson is starting "big" school!!

I think I am going to cry more than she will. Katie can't wait! She wants to show off "her baby" to the other children in her class. I missed the parent coffee evening but Jason said if the children are anything like their parents, then Katie will make lots of friends. Very encouraging! Just by looking at her, it's impossible to tell that her little body has been through so much. As you can see from the photo, her hair is growing back. She looks like a normal little girl with a short hair cut. Her scars will fade and we will move onwards with our lives but never forgetting the lessons we have learned over the past almost year and a half. Cancer has not defeated this child, it has not and will not hold her back.

Thank you for checking up on Katie's progress. Please keep her, and the other brave warriors, in your prayers.

THE BABY IS HERE

2006-08-26T10:41:00.000Z

Sophie Lauren Benson was born at 1.50 a.m. this morning (Saturday, 26th, August 2006) weighing in at a healthy 7lbs 12oz. Mum and baby are doing well. I have enclosed one photo of the proud Daddy and big sister, more to follow when they have been uploaded.

Congratulations to Nicole, Jason, Joshua and Katelyn on the birth of your beautiful, healthy baby girl.

The adventures of August

2006-08-08T13:42:00.000Z

Katie's final round of accutane starts 21st August. Her final round!!! Do you hear the angels singing........PRAISE GOD!!!!!!!!!!!! This is the what we have waited for since May 2005. It goes without saying that we are anxious about Katie being off treatment but delighted she'll be able to, hopefully, have a normal life. That's what she deserves. God please hear our prayers, it's all we ask for; her health and happiness. One day I hope she'll be reading this and then she can see how far she has come. I love you, Katieboo...all the way to the moon and back xoxox

Baby is lying head down which means I am not suffering pains all day, every day, with little toes kicking my ribs. The scan went well. Now "all" that's left to do is go into labour and give birth. Josh and Katie can't wait for "their baby" to come.

Sending love and hugs to everyone!! :-)

Cookie monster

2006-07-26T13:14:00.000Z

Katie is almost back to her normal playful self. Her weight has dropped another 0.3kg making her about 2.6kg less than she was a few weeks ago. I am struggling to get her to eat. She will nibble on some sponge fingers and rich tea biscuis, but that's about it. Despite that, she and Josh are having fun baking cookies with Nana every single day :-)

The end of treatment is near, Katie has started round 5 of accutane. Speaking of nearing ends, we have 5 weeks to go until the baby is due. I am waddling around like a duck carrying a few extra stone of bodyweight. This pregnancy has run very smoothly, for which, I feel richly blessed. At 36 weeks, I'll be having another scan to check the baby is still in the correct position for labour. We are so excited about the impending arrival of a new family member.

While things go well, I will attempt to update every few weeks or so. Until then please assume that no news is good news!

She's coming home

2006-07-18T09:55:00.000Z

Katie has come on in leaps and bounds. She has been sitting up a lot more, even playing games with Josh on her bed. The epidural and cannula have been removed which leaves Katie less restricted movement-wise. If she's in any pain, she certainly isn't complaining about it. On the surgeon's rounds this morning he said Katie can come home in the next day or two!! She is beginning to eat again after having lost 2.3kg since this whole ordeal began.

I would like to take this opportunity to thank all the staff here on the oncology ward. If it hadn't been for your efficiency, commitment and dedication, Katie might not have been diagnosed with a twisted bowel at such a quick speed. The alternative doesn't bear thinking about. THANK YOU for all that you do. It helps make life much easier for the patients and their families :-)

As cool as ice

2006-07-14T10:30:00.000Z

Katie has spent the last couple of days since her surgery mostly sleeping or watching TV. She's very unhappy about all the tubies, and boy is she letting us hear about it! As the digestive system recovers from the surgery, Katie has to remain nil-by-mouth. In this unbearably hot weather, it isn't very pleasant to have such a dry mouth so we've had lots of dashes to the parents room to accomodate the numerous requests for ice. Pain wise, Katie is coping ok, the epidural will probably be removed tomorrow. The big "event" of today was when Katie vomitted up her NG tube and then cried solidly for several hours, it was heartbreaking. As I type, she is sleeping with a new tube firmly taped in place. I won't even divulge the details of the trauma she goes through everytime they re-insert that dreadful nose tube. Let me just say that her screams could be heard down the corridor.

I feel very sad for Katie that she has to spend part of her summer holidays in hospital again. It doesn't seem fair, she has been through too much already. I know God only gives you as much as you can handle but sometimes you just get overwhelmed. Just got to keep the faith and keep believing that when you pray, miracles really do happen. If ever I feel sorry for myself, I just remember how brave Katie has been through-out this. That girl is my rock of strength, she keeps me going.

I was introduced to a new family, their 4-year-old son Owen has just been diagnosed with Neuroblastoma. They remind us of us how we were one year ago; frightened and confused. I gave his Mum this website address. I wanted to show them that we were in their shoes just 14 months ago and look how far our daughter has come now. Please keep Katie and all the other brave fighters in your prayers.

Emergency surgery UPDATE

2006-07-12T18:28:00.000Z

Praise God - the operation was a complete success and Katie is doing fine. The surgeon explained that scar tissue from her previous abdominal surgeries had twisted with the bowel causing a blockage. Jason and I were both able to be with Katie in the anaesthetic room. No matter how many times you watch your child go under, it never gets easier. The surgery didn't actually start until around 10 p.m. as there was a slight glitch but everything else ran smoothly. The nursing staff were very efficient - we received regular updates directly from the operating theatre. The final phone call was to let us know they were sewing our baby back together, and within the hour, we were by her side. Katie is sleeping peacefully complete with NG tube, catheter and cannula in her hand. An epidural is providing adequate pain control, for which we are very thankful. Thank you for the continued love, support & prayers.

Emergency surgery for Katie

2006-07-11T10:38:00.000Z

Having recently posted an update on how F.A.B.U.L.O.U.S. life has been going for Katie, I am sad to say things are looking a little more sombre.

Katie had, what appeared to be a stomach bug, she was vomitting throughout the day complaining of stomach pains. For precautionary methods, she was admitted to hospital for observation. Our biggest worry was that she had not had a bowel movement in several days. Katie was displaying symptoms very similar to what she had been experiencing at diagnosis. After much panic, (and an x-ray & ultrasound scan) we have been told the problem is a twisted bowel. Katie needs urgent surgery to rectify the problem. Needless to say we are very thankful that this is NOT a recurrance of a tumour, but remain anxious about the major surgery that lies ahead. Until then, Katie remains nil by mouth. We have just say goodbye to her "tubies" but it looks like she'll be hooked up for a few days post surgery. Poor little munchkin, as if she hasn't been through enough already. Please pray for a successful surgery and a speedy recovery for Katie.

*****************************************************

I would like to take this opportunity to briefly thank my friend, Carly Brent's, 15 year old daughter who ran the Race for Life, last weekend "in celebration of Katelyn Benson". Thank you Emily, let it never be said that young people don't do their bit for society.

*****************************************************

Feeling jolly in July

2006-07-01T22:16:00.000Z

The 4th round of accutane started last Monday. It was a big week for Katie. She is now free of Mr. Wiggly!!! It's a shame the weather isn't warmer, she's been wanting to play in her paddling pool. Katie is patiently waiting to re-start Splash time swimming lessons as soon as a place comes available. Fingers crossed, she won't have to wait too long.

It's been decided that Katie's Make-A-Wish princess party will be on Sunday, 3rd September. Providing all continues to go well, she will have finished treatment and it will be a double celebration. The MAW people are starting her room at the end of August. If all runs smoothly, it should work out that, the night after her party will be Katie's first night in her newly decorated bedroom.

This academic year, Katie will start primary school. Jason and I met with her nursery school headteacher and she feels there is no reason why Katie should be held back. She copes well with the social aspect of school, and physically she is growing stronger aided by weekly physiotherapy sessions. The main cause for concern is her emotional development. It seems as though Katie's physical recovery is happening far quicker than her psychological recovery.

Katie and Joshua finish both finish school on 12th July. Then, I have 2 1/2 months of mass chaos. With my ever growing belly, I just don't have the energy to chase a rowdy 6 year old and a fussy 4 year old around the house. Lucky for me, Nana and Papa Benson have stepped in and kindly offered their services.

FABULOUS NEWS!!!

2006-06-15T09:57:00.000Z

I was waiting until we had received the official reports until I updated. Katie's bone marrow aspiration was NEGATIVE for NB, as was the biopsy (trephine). The metastatic lesion in her leg has been cleared - PRAISE GOD!! However, the 'spot' in her abdomen remains unchanged. As with the previous scans, this 'something' can be seen on the MIBG scan but not on the CT scan. Both Jason and I are fully aware that this disease has a high relapse rate. Now, we sit and wait. We pray for good results from the next set of scans.

On Tuesday, Katie will be saying goodbye to her faithful friend Wiggly Woo the Worm (how's that for alliteration?!). This does mean she will need to be poked when her blood counts are done but hopefully that's nothing a little magic cream can't fix. Katie is very much looking forward to long and luxurious soaks in the bath, and spending the hot summer days splashing about in the swimming pool.

It's been a tragic week in the online community. I couldn't do an update without paying tribute to Laura, Jacob and Will - earth's bravest warriors, who are now heaven's newest angels. Our hearts go out to the families of these children and our prayers remain with them as they face the difficult days ahead.

Hail the sunshine!

2006-06-02T13:16:00.000Z

Things are going well in the Benson household. We have been doing a Spring clean to make way for the baby. Katie and Josh certainly have some strange ideas regarding how we should decorate the nursery! With Katie being at the hospital less, they've grown even closer and get on like a house on fire. I wonder what things will be like when we throw a new sibling into the equation.

Katie's had a few ups and downs with taking the accutane (we are now on round 3). I don't know why she's suddenly struggling to swallow them, as it's always been a talent of hers. For now, it's being swallowed with a big gloop of "red flavour" jelly. If it works for Katie, it works for me. It might be back to practicing with the M&Ms again. Katie can be naughty, I've caught her pretending to swallow pills and then spitting them out. We have to be vigilant with her, we can't afford for her to be skipping doses. Blood counts are all good, Praise God!! Last week, Katie came home from the hospital a new woman....without her nose tube, hooray!! It's so lovely to see all of her beautiful face. She came bounding through the door with an enormous cheeky grin on her face, definitley a Kodak moment :-)

As I type, Katie is lounging around drinking a Frescata, wearing sunnies and looking fabulous. Naturally, I am very anxious about next week's scans. However, I seem to have passed the stage where I look at her and burst into tears. As time has moved on, our family has learned to live for the moment and take each day as it comes. There is no tomorrow, only today.

Before I say goodbye, I wanted to share a funny story. Last week, Katie came with me to my antenatal appt. and is going through a stage where she is fascinated with everything. In the waiting room, she loudly enquired "Mum, did you eat a baby?" Of course, I said NO, to which Katie replied "Then how did it get in your tummy?"

Please keep praying for Katelyn and her brave cancer warrior friends. These are the children of God, and they are so very special.
Only by his sufficient grace, Nicole XOXOX

One year today

2006-05-16T19:43:00.000Z

"Twinkle twinkle little star, how wonderfully blessed we truly are!"

One year ago today, Jason and I were told our daughter had Neuroblastoma Stage 4. I could barely spell the word, let alone, know what it was. We are thrilled that a year later, Katie remains in our lives filling us with love and hope. We don't really feel like celebrating today but we do thank God for giving us another year with our precious girl.

Katie's calcium was high again, which led to some long days at the hospital. But thankfully the 2nd round of accutane is done and dusted. There is another round to complete before scans which are in June (MIBG scan, bone marrow tests and urine tests). Accutane is renowned for "clearing up" residual NB cells. We are praying for the remaining cancer cells to have been eradicated.

On a happier note, Katie has gained another 1 kg and is always wanting to eat. A far cry from the little girl who we used to fight with to get her to eat a bite of chicken nugget. After one meal is finished, she always wants to know what's next. At 10 a.m, she likes to choose what she can have for lunch! Plus, she has snacks in the morning and the afternoon.....

Please keep our special friends in your prayers. Their websites can be found in the links section.
Colette was diagnosed around the same time as Katie and she has her scans too - fingers crossed for no evidence of disease!
Samantha and her family are waiting to hear if her bone marrow disease has cleared in order for her to press ahead with the stem cell transplant.
Kahlilla is a little sweetheart in Australia who needs all the prayers she can get as she recovers from her stem cell transplant.
Jesson is from the UK and undergoing treatment for NB and needs to be big and strong to fight this horrible disease.
Thomas our little buddy from the hospital is getting ready to spread his wings and fly, please keep his family in your thoughts
Grace's family are struggling with the loss of Grace and miss her terribly. Our hearts ache for them.

Well, that's a long list but we have a lot of friends who are dear to our hearts. They've offered a lot of support to us along the way, I'd like to give the same back.

I find myself updating less and less and time passes. Please operate on the basis that no news is good news. I will most likely update after we receive the results of the disease re-evaluation. Please pray for Katie to reach the No Evidence of Disease status. Thank you!!!!

Where does the time go?

2006-05-03T17:04:00.000Z

We are approaching the one year mark since D-day (diagnosis day). This time last year, we had one very sick Katelyn, and were filled with fear. A year on, and I truly believe we are different people. Our 4 year old has taught us more in this year than most people do in a lifetime. The 16th May will be a funny day. Its not as if we can actually celebrate. Katie is not NED yet and she has more treatment to battle through. The worrying never ceases. However, neither does our faith in God. His healing hands have touched Katie time and time again. We believe He will heal her and she will be cured forever more.

Now for the update: Katie's fuzzy head has upgraded to actual hair! I can't wait to start putting ribbons and butterfly clips in her hair again. The effects of the radiotherapy treatments have left her hair very thin, however it is growing back...and its blonder than ever!! She is in the middle of her 2nd round of accutane. There was some trouble with her calcium and her blood chemistry was out of whack. She needed fluids, lots and lots of fluids. Katie's attendance at nursery has been fabulous but I doubt I can see her going tomorrow as its nearly midnight and she's still awake. I'm sure she'll be too tired especially with the hospital appt. tomorrow. Katie's platelets are low and she needs a transfusion. The district nurse came this morning to do blood counts. Slight bump in the road but otherwise she is fine. For the dry lips, we use vitamin E lipsalve which has been a God send. The only other thing is really dry knees. Any suggestions?? We have tried everything but still they are dry and sore.

Disease evaluation scans are coming up in June, after round 3 of accutane (lovingly renamed CRAPutane hehe!). Its never too soon to pray.....so please get down on your knees and PRAY PRAY PRAY that Katie's scans show her to be NED!!

I'm still reeling from the shock of Gracie's death. Our hearts ache for the entire Callahan family. Please pray for them as they face the difficult days ahead without their little girl.

Sad news

2006-04-26T13:18:00.000Z

"When our hearts break for her, even when we grieve, we know that He will heal it, if only we believe."

Grace Myra Callahan, aged 4, has earned her angel wings after a courageous battle with neuroblastoma. Our thoughts remain with Leah, James and their entire family. We are praying they find their peace, knowing their beautiful daughter suffers no more. Fly high Gracie, for now you are free from pain. We shall miss you so very much and your memory will live on in our hearts.

It was sheer torture telling Katie the news. We just cuddled and cried. Then, we talked about happy memories of Gracie and flicked through a photo album. Katie was very withdrawn after seeing the photos, especially ones of herself when she was poorly. I've put the album back on the top shelf for now. I suspect she was greiving, not only for her dear friend, but for herself too.

Only by his GRACE
Nicole, Jason, Josh & Katie
XOXOX

I wish for...

2006-04-24T17:59:00.000Z

Here we go for round 2 of accutane. Our normally calm young lady turns into an absolute monster while she is 'under the influence'. We will be very much looking forward to when all this round is over so we can get another 2 week break. Apart from the mood-swings, Katie tolerates the sore skin quite well. Under the advice of some other NB parents, we are now using Vitamin E which seems to be doing the trick.

Scans have been scheduled for the end of May after the 3rd round of accutane. We are praying it will have cleared the residual "spots" in the femur and abdomen which lit up on the MIBG in January. Our fears are often unsettled when Katie complains of leg pain. We have been reassured time and time again that this can be a side-effect of the medication but it doesn't stop that niggly "what if" feeling. We have spoken to Dr. Ainsel and she said that Katie can probably go NG tube-less. Whoooo!! It will be so nice to see all of Katie's smiling face without the tube taped to one cheek. After we get the all-clear from Katie's scans, we will schedule the surgery to remove her Hickman line. In a strange sort of way, we are gonna be sad without it, little "wiggly" has become a part of the family!

HAIR UPDATE: Yes, I can confirm that there is definitley some serious hair growing going on. Katie woke up with bed-head the other day. As they say....bad hair is better than NO hair!!

Joshua, the "quiet" one has really come out of his shell. He's going to football practise every week and now he's started Karate with Jason. Don't even get me started on the tears that Katie cried when Josh decided to show us a few of his ninja moves!

I have some very exciting news; Katie was referred to the Make-A-Wish foundation! We had considered going to Disney, but we've been when Katie was about 2 y/old she didn't seem overly thrilled about repeating the experience. Plus with the arrival of the baby in August, this idea didn't seem feasable. I wondered why on earth our Disney fanatic wasn't jumping up and down at the prospect but, as it happens, Katie had ideas of her own! She wants her new bedroom decorated Disney/Princess style. We moved house in early 2005 but with Katie's diagnosis, we never got round to giving her bedroom a good make-over. Now it's going to get all done up beautifully and on top of that, Katie asked for a princess party and if it's a princess party that Katie wants, then a princess party Katie shall get!

On a more sad note, some of our little friends desperately need prayers. Grace relapsed last year and as all NB families know, this is serious stuff, they need a miracle for Gracie who is currently in the PICU. We've grown close to the family and we are heartbroken. Another little boy Thomas from our hospital has been sent home with no more treatment options available to him. He has a brain tumour which has spread to multiple sites throughout his brain and spine. This is terribly sad for his parents and two brothers, he is just 2 years old. MAY GOD GRANT THEM A MIRACLE CURE, AND PEACE FOR THEIR SWEET FAMILIES!!!

Poem: "Just for"

2006-04-24T01:35:00.000Z

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles..

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just! for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.

I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day..............

Happy Easter!

2006-04-16T17:21:00.000Z

Happy Easter!

Jason, Josh, Katie and I wanted to wish everyone a very 'Happy Easter'. We've had a lovely weekend and the kids are sleeping having eaten about a tonne of chocolate!

I will update on Katie next week.
Take care everyone XOXO

Bouncing up

2006-04-11T21:06:00.000Z

I wrote such a long update and then my stupid computer decided to delete it so apologies for the slightly shorter one today.

We have broken free from the hospital although another course of antibiotics will need to be continued at home. Katie has made a full recovery from her infection and she is bouncing up and down like a kangaroo. She think's she is Roo from Winnie the Pooh. It's so adorable but then again, she is my daughter, so I am rather biased :)

Platelet count was unusually low so she was transfused at the clinic. We are hoping that, as Katie is becoming less transfusion dependant, she may have her "wiggly" removed sometime in the near future. She can't wait to be able to go swimming and have a bubble bath. Just gotta keep praying those blood counts are holding up!!

Please keep our little "roo" (and all our cancer fighting friends) in your prayers. This is a nasty disease with a high relapse rate. Katie has a repeat of all tests and scans in May. We need her to reach NED (No Evidence of Disease) which is another term for remission. God has performed many miracles on Katie, we now can only hope he will grant her a miracle cure forever!!

April Fools!!!!!!!!!!!!!!!!!

2006-04-03T10:31:00.000Z

We are back in the hospital. This is no joke. Katie has a nasty urinary tract infection. She's on antibiotics (cefixime) 4 times a day and taking oral paracetamol for pain. Her temperature has come down but her pain has not subsided. She is very uncomfortable and unhappy.

Katie started her first round of accutane last week. What a champ she has been with swallowing the pills. It took a lot of coaxing and bribing but we got there in the end. So far, we have yet to see any side-effects although we are making sure to keep her skin well moisturised. No sign of any sun in this country anyway!

Today is my birthday and I want to thank everyone for the lovely cards and presents. I am spending the day in the hospital although Jason is taking me out tonight as Laura has so graciously offered to babysit Katie while we go to a restaurant for a couple of hours.

I will update on Katie's condition later in the week.
Please keep praying for this infection to clear up so we can go home!!

Long time no update!!

2006-03-20T19:22:00.000Z

The last time I logged onto this website to update the journal was in February, I've been seriously slacking! I will make an effort to update on here more often.

Treatment wise, Katie will start round one of accutane (13-cis-retinoic acid) next week. She will complete six rounds and will take the tablets for two weeks on and two weeks off. The side-efects include; dry or fragile skin, dry or cracked lips, dry mouth/nose and itching (those are the most common). Eeeek! Katie is a fusspot about her skin. Ask anyone who knows her and they'll tell you. She screams blue murder if something itches her! But she's been through far worse, I'm sure we can deal with that one. I will keep you posted on how that's all going.

On the non-medical side of things, life has been busy for us with school, work, playdates etc. Katie's party was amazing :) There were lots of presents, lots of people, lots of fuss, lots of cake and lots of big smiles. I can't quite believe that my big girl is four already and my big boy turned 6 so we had an extra special celebration. Happy birthday Joshy, we love you all the way to the moon and back. Love you!!!

What other big news.....aah yes.....how could I forget? We are having a baby :) The latest addition to the Benson family should be joining us around 30th August. I already have my hands full with Josh and Katie but I'm sure we'll manage somehow. The kids are thrilled to pieces, as are we. What a blessing, a new baby for our new start in life.

Katie is our little butterfly. At the tender age of 4, she is so anxious to spread her wings and fly. It's truly touching to see her grow in confidence every single day. It's hard to believe that she has been through. Just looking at her, despite the lack of hair, you wouldn't know what's been going on inside that little body. Speaking of the lack of hair, unless my eyes are playing tricks on me, it seems as though Miss Katie's hair is quickly growing back! Watch this space!!

Happy 4th birthday Katie

2006-02-28T07:35:00.000Z

Today is Katie's 4th birthday and we pause for reflection.

In May of 2005, we began to wonder how many more birthdays our precious daughter would live to see. It's hearbreaking for any parent to contemplate the thought of losing a child. Fortunately we have a wonderful team of doctors and nurses on our side. We have so much love and support from family, friends, neighbours and even strangers. It's hard to imagine getting through this without them. Despite all Katie has been through and will continue to go through, she remains a happy and bubbly child who always puts others before her self. She is truly a blessing! Her birthday was lovely and all the cards/presents she received was a testament to how many people love her. Katie's cake was Finding Nemo, what else?! As I speak, her and Josh are devouring they way through their eight piece, hehe! We are having a 'little' gathering next week in fancy-dress, that should be a laugh! Katie and Josh are planning to go as a princess-fairy-ballerina and Spiderman, respectively.

Darling Katie, we love you to the moon and back. We wish you a very happy birthday and MANY more to come. Hope this year ahead is bursting with all the GOOD things that you deserve and we hope your fourth year sees you both happy and healthy. Love you princess, more than you could ever imagine! Hugs, Mummy and Daddy XOXO

"Happy birfday Katie" <--- little message from Josh

Thank you everyone for all your prayers throughout the hardest days of our lives. We truly believe that you have helped lift Katelyn up and aided her in this fight for a miracle cure.

Radiotherapy Treatments

2006-02-18T18:18:00.000Z

Katie's radiotherapy treatments were delayed due to low platelets but finally her counts were good enough to continue. For the stimulation, Katie was sedated and woke up in a bad mood. Ick!!! Small price to pay for this treatment, I guess. They put X's on Katie's body (her leg and stomach) which will have to stay on while she receives her treatment. The first few treatments have gone well. Katie is such a trooper, she holds really still and guess what....she can do her treatments unsedated. Big whoop!! That's definitley a big plus, she does not fare well with the 'lovely' diazepam! Side-effects have already kicked in, Katie is exhausted. Part of that exhaustion is from the daily trips to the hospital. We opted for her to receive the treatment at Children's as our local hospital is not eqipped for pediatrics in this department. Jason and I felt it would be better to be where Katie was most familiar. Apart from the stimulation, all has run smoothly. We had a bit of trouble co-ordinating the sedation between the two departments so we really pushed into them allowing Katie to complete her treatments unsedated. After all, she's done some scans awake. We continue to help her practise 'holding still' and give her lots of stickers and praise. That seems to do the trick! No matter how sleepy she is, her head always pops up when we past the toy shop on the way home. She never forgets that Mummy and Daddy promised her and Josh a present after every treatment!

I was quite apprehensive about the side-effects of the radiotherapy. Katie's WBC and platelets were already low and this treatment can deplete the bone marrow further. She has been having regular bloodwork and transfusions where nessecary. Once treatment is through Katie will most-definitley be infertile. When the radiologist told us that, all I could think was; I will thank God when Katie grows old enough to want to be a parent. At least we'll know she has fought through this. There are plenty of ways to combat that particular problem but of course we are sad that these options are being taken away from such a young life. If that makes any sense what-so-ever?! The side-effects seem so unessecarily cruel to these kids who are already going through too much. But as I said before, it's such a small price to pay for Katie's life.

It's only 10 days until our 'baby' turns four!!!
Good night and God bless!!! XOXO

Post-transplant evaluation

2006-01-26T07:32:00.000Z

We had a wonderful Christmas and New Year. It was just the family spending some quality time together at home...how lovely!! :) This month has seen Katie back in the hospital almost every day for 2 weeks as she underwent numerous tests. Unfortunately we did not receive very good news from the audiological testing, Katie has lost a large portion of her hearing. She was fitted with hearing aids yesterday which she is slowly getting used to. She chose pink ones and calls them her earrings, so cute! We will be seeing a speech therapist although Katie is appears to be doing fine speech-wise. Her speech development has slowed down but she was above average anyway so she can definitley interact with her peers just fine. The scans showed further improvement although the MIBG did show uptake around the area of her primary adrenal tumour and in her femur. These areas will be marked for radiotherapy. The EEG was normal, thank God, we were slightly anxious due to earlier concerns after Katie's seizure but everything appears to be hunky dory in that department.

We believe in God's miracles XOXO

Journal Entry Number 100

2005-12-08T00:12:00.000Z

God didn't promise days without pain, laughter without sorrow or sun without rain; but He did promise strength for the day, comfort for the tears and light for the way.

Katelyn is HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry I didn't get a chance to update sooner, we've just been so busy having fun. On Monday, Katie received a blood transfusion and watched Madagascar 4 times repeatedly. She ate a huge bowl of pasta for dinner and even asked for seconds. Furthermore, she fell straight asleep at 9 pm with no complaints and did her mouthcare with not so much as a whimper. That's my girl! It was all smiles when we woke up on Tuesday with the odd tear or two when we goodbye to the wonderful medical team on the transplant unit. Daddy and Josh were there to greet us in the carpark and no, we didn't lose the car this time :)

Katie's immune system is still severely compromised and she may remain transfusion dependant for some time now. So, we are continuing with the rigid cleaning rituals and we will remain in semi-isolation at home. Same rules apply please if you're visiting us. Please don't drop by if you've been ill or in contact with someone ill. As much as we appreciate the support (and we do!), it's a risk we can't afford take while Katie recovers. It's most likely going to be a quiet Christmas at home for the Benson family. We shall be embracing every single moment of peace. And, of course, counting our blessings.

What's next for Katie? We will do a repeat of the diagnostic tests including the MIBG scan, bone marrow tests and an EEG. Katie will also undergo another CT scan to prepare her for the radiotherapy treatments. This will be done by the radiation department and is called simulation but I will talk more about that later. For now, we feel very lucky to be under one roof for for the next few weeks. I couldn't think of a better Christmas present. And whats more, it will be one very happy new year! Bring on January 2006 :)

GOD BLESS! Thank you for all the love, support and prayers.
We will update again later in the week.
Love Nicole, Jason, Josh & Katie XOXO

Things can only get better

2005-12-04T12:05:00.000Z

According to the 'blogger index' this will be journal entry number 99. I am eternally grateful for our wonderful family and friends who have been following Katie's story over the last days, weeks and months. I can't even begin to explain how much that means to us, and how much it touches our hearts to read emails from complete strangers who tell us they are praying for our daughter. I am even more delighted to announce that journal entry number 100 will be written from the pleasure of our own home. Katie is being discharged on Tuesday!!!! Technically it's still 3 days away because it's still sort-of Saturday night as we haven't gone to bed yet. Katie slept from Friday night right through Saturday lunchtime. That would explain why she is still buzzing with energy at 1 am :) On the medical side of things, everything looks fine. Katie's Neutrophil count is 1.35 and she's gone the last couple of days without any transfusions. Although her haemoglobin was a little low and she may need a blood transfusion before we go home. After then, we will be making visits to the hospital several times a week for blood counts and a check-up etc. Katie's chest x-rays are looking clear and her lungs are sounding very healthy. But most importantly, the fungal infection has not left any damage; the CT scan results were very promising. Over the last week or so, it did look as though a trip back to the PICU and a broncoscopy was on the cards but clearly the doctor's underestimated our little Katie's fighting strength. She battled her way through and as the timeless classic goes "things can only get better!!!"

Preparing to break free!!!

2005-12-01T12:04:00.000Z

Katie had a CT scan which confirms her lungs are almost perfectly normal except there is some residual scar tissue. Her chest x-rays have been looking great and apart from needing a whisp of oxygen earlier in the week, her oxygen sats have been also been fine. Her Neutrophils and WBC continue to climb so Katie is now out of officially isolation and taking full advantage of her new privileges! We are slowly reducing her medications, Katie is off the morphine and coping well. Little snippets of her personality are returning and we are delighted at the speed of her physical and mental progress. Katie actually looks forward to doing her daily physiotherapy :) Today, Katie got a platelet transfusion and I am pleased to tell you that she hasn't had any sickness at all...touch wood!

Katie should be going home sometime in the next few days after spending 7 weeks in the hospital. Now that it's December, are we allowed to start the christmas countdown? Katie has an advent calendar waiting for her at home. She might have a few days to catch up on. But what's a few extra chocolates here and there?

Is this not the shortest, least detailed update I have ever written?! I will try harder over the weekend, you have my word!! Thank you for the continued love, support and prayers! Love Nicole & Katie XOXO

Two steps forward

2005-11-24T07:59:00.000Z

.......and one step back! Just as she was on the upward heave, Katie spiked a temperature followed by sporadic episodes of griping pains in her stomach. This morning, she got a bad case of an "upset tummy" and we have been changing nappies every hour or so. Ick!! She started coughing again and she sounded very congested. There is some slight increased inflammation in her lungs, as shown to us on the chest x-ray. But all we can do is sit and play the waiting game and pray it doesn't flare up again. Katie's breathing seems pretty stable and she's playing perfectly happily. Right now, she is hungry and asking for food but everything seems to run straight through her body. Spirits seem pretty high but we are upset as we though she had turned a corner. We are keeping our fingers crossed that the anti-fungals and a new antibiotic (which was added today) will clear up any remaining problems in Katie's lungs. We shoulld know more in about 48 hours and have a definitive answer. Her blood counts are continuing to climb and we pray her immune system is strong enough to fight off the bugs.

Please keep our Katie in your prayers. Also, please spare a thought for our friend Gracie who is having a rough time on chemo (she has recently relapsed) and Samantha who is stuck in the hospital feeling poorly. Thank you for all the love and support. Special thanks to Diane who sent Katie the cutest pair of fluffy pink socks :) xoxo

Can we go home yet?

2005-11-22T14:12:00.000Z

Katie has spent the last month locked away in isolation but her counts are rising, rising and she is slowly recovering and getting stronger. Although she's come a long way, she's still need to get her strength up and some weight back on her little body. Katie's weight is shockingly low despite the TPN and NG feeds. Her muscles are very weak from lying in a hospital bed for so long and will need some physiotherapy in the near future. Katie woke up covered in bruises and I'm not surprised because her haemoglobin was down to 7!! Since her blood transfusion, she has been zipping around playing and singing. Thank God for Ipods eh? I can't even begin to describe the ache Jason and I have felt watching Katie battle through her pneuomonia. I just sat holding her hand, rubbing her chest and praying to God for her to remain calm and composed. She's getting better and her x-rays looks good. Whooo!! We aren't quite ready to come home as Katie is still being slowly weaned off the morphine and other drugs. We'll continue to see how she copes out of isolation and without the pain relief. However, we are looking at returning home some time next week. That's totalling up to around 6 weeks in the hospital.

In light of the last few entries being somewhat difficult, today I thought it would be nice to share a little sample of my daughter's spunky personality...........
Katie: Mummy can we go home yet?
Me: Not quite yet, darling, you need to be a 'bit more better'
Katie: But when?
Me: Soon!
Katie: Oh ok (big sigh for such a small child)
5 minutes later......
Katie (again): Is it 'soon' yet?

I wanted to take this opportunity to thank everyone for the continuous love, support and prayers. Also, thank you so much to everyone who has been sending such sweet emails :) Sorry if I take a while to reply, our laptop has been rather tempermental. And for those who asked, Josh is feeling much better. We actually received his blood test results today and they are all normal. Sigh of relief!! Now all we have is a small bruise to show for Friday's ordeal. He is very proud and tells me every day that it's changing in colour. I guess I'd better head back and see how my cheeky monkey is doing. Last time we chatted, she wanted to watch some more TV. I'll give you a clue about what it is...."he lives in a pineapple under the sea" and incidently, he doesn't live in a pineapple under a tree, which is what Katie orginially thought. Or maybe he does? The mind boggles..........by the way..........can we go home yet?

A day in the life...

2005-11-18T22:18:00.000Z

It's been 25 days since the transplant and 33 days since Katie was admitted to the hospital. I can't believe it's been so long since she has seen the outside of these dreadful four walls. Unlike me, Katie is stuck in isolation until her counts have risen. Although I am most delighted to announce that her Neutrophils have risen 1.71 and they are definitley going in the right direction. Although she will need to be weaned off the morphine and other medications before she is deemed medically able to come home. She will need clear chest x-rays before she allowed out of isolation and she will probably remain on the steriods for up to 2 weeks. Things are slowly improving and her oxygen saturation has remained normal, praise God!! But even when we do get home, we are looking at a pretty isolated lifestyle for the next couple of months. Still, our social lives ground to a halt six months ago, so another few months shouldn't be too much of a challenge. It's like they always say, what doesn't kill you can only make you stronger.

This morning Mum went off duty and Dad came on duty as Katie decided to empty the contents of her stomach onto the floor. You just know when it's going to be "one of those days". I departed one hospital and headed straight for another hospital. Big sigh!! Josh needed a blood test at our local hospital as the doctor's surgery couldn't manage to fit him in before about April 2008 (another big sigh). Josh was quite the super hero during the whole nasty procedure. His veins were collapsing (probably due to mild dehydration as he hadn't drunk much) and they couldn't get the needle in so they had to use a smaller one. 20 minutes later I carried a rather green looking child out to the car where he promtly threw up in the car park, narrowly missing his shoes. I had seen both my children throwing up and it wasn't even 11 am so what does one do? She sits on a cold bench and cries. It was as if the reality had hit me again. My family is torn apart, my son's heart is breaking and my daughter is having cancer treatment. Well, eventually I composed myself and drove Josh home. Since then, he's devoured a Happy Meal and watched a few episodes of SpiderMan. I have since found myself back at the hospital rubbing my baby's feet while she bops along to Whitney Houston's greatest hits on the Ipod.

Before I say goodnight, I will leave you with a quote by Lance Armstrong courtesy of Samantha's website (her link can be found along the side of this page)
"If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to hope? We have two options, medically and emotionally: give up, or fight like hell".

Tonight I am especially grateful for the strength of my precious Katelyn...who has been fighting this nasty disease with every inch of her soul!! Only by his sufficient grace, Nicole xoxo

It's Dad today...

2005-11-16T12:34:00.000Z

Hi, it's Dad doing today's update. I will be reporting on good blood counts. The neutrophils are at 1.6 and her HBG is 10.6 (that's pretty normal). She did get transfusion of platelets. Her counts weren't that low but she was sick up her NG tube and they transfused her before they re-inserted a new tube. That was an experience to say the least! Katie's oxygen saturation has fallen slightly below normal. She needed the oxygen mask to keep her comfortable and an increased dose of morphine. If things don't pick up the pace, we may be looking at a slightly more invasive procedure. Katie may need a broncoscopy under general anaesthetic. However we hope it won't come to that as we have seen some good improvement in the x-rays. Katie has been started on steriods which we have been told might increase her appetite. Although we weren't expecting such a huge increase. She's gone from barely anything to eating a crumpet, bowl of frosties and half a tube of pringles. On that note, I wish you all a good night. Our take-away has just arrived. Nicole, if you're reading this, yes I did get your note and yes I did cook the dinner. I burned it, we're having pizza! I love you and Katie, please send her a big kiss from Daddy and Josh :)

The calm after the storm

2005-11-14T09:05:00.000Z

Sorry for the lapse in updates over the weekend. Life in the intensive care unit is hectic and we were unable to stay during the nights so any free time away from Katie was spent catching up on a few hours of sleep. I am delighted to tell you she is doing so well. Katie has gradually become less dependant on the oxygen and is able to maintain normal oxygen saturation levels. She was able to leave the PICU after her blood pressure stabilised and she has also not spiked a temperature since Sunday (although I don't want to jinx anything). Katie is now comfortably resting in her regular room on the transplant unit in isolation as she is still neutropaenic. Although her neutrophils are up to 0.87 today and they have been climbing. The chest x-rays have shown remarkable response to the anti-fungal and she may have another CT scan later in the week. Katie is now on day 21 and we are waiting for her counts to climb before she will be allowed home. She got a blood transfusion and a platelet transfusion today so she's feeling pretty spunky. We've been watching lots of TV and catching up on all the latest gossip via our favourite "big girl" magazines. I thought I would add a quote which I feel is quite fitting with regards to the last few months "when life brings you to your knees, you are in the right position to pray". Since this has become a family website, I felt I should mention that Josh has been having a hard time at the moment. His teacher phoned home and mentioned he is struggling to concetrate at school. Please remember Josh in your prayers too. This has affected him very deeplyand he is such a sensitive little boy who worries an awful lot. Thank you so much for all the prayers and the emails etc. God has been so good to us.....we feel richly blessed. Thank you!!

Still in PICU

2005-11-11T16:59:00.000Z

Katie remains in the Pediatric Intensive Care Unit while she battles through her lastest problems. Although we seemed to have broken the vicious cycle of the high temperatures, her blood pressure is still unstable. They want to keep her under observation for another 24 hours. Providing she does ok, Katie may be out of the PICU by Saturday. Another chest x-ray shows that her lungs look a great deal better and they are improving. Praise God!! Katie's breathing has been quite heavy while she was sleeping. I voiced my concern to the PIUC doctor but she was fine during Wednesday night. There were no frantic 2 am phone calls and so I assume everything went relatively smoothly. However since last night (Thursday), her breathing deteriorated quite rapidly and Katie did required some extra help. She's on the oxygen mask...her 02 sats dipped down to about 80% but they're up again tonight. Again, just another reason to thank God for the glorious turn of events. Katie is stable and, as always, she is holding her own. She is still Neutropaenic which makes her even more susceptible to these nasty little bugs. I know it's common after transplant for these kids to end up with an infection and land themselves in the PICU. It's such a devastating fight our babies have to endure. Thank you for all the prayers and for your concerns about our "Princess Katie". Despite her trials and tribulations, she remains strong and determined. Good Night & God Bless!!

Further problems

2005-11-09T17:44:00.000Z

I feel like an emotional wreck. I know some of you have been wondering how Katie is doing, so sorry for leaving you hanging. It's taken me a while to get a moment to sit down and write. Katie had a chest x-ray which showed some excess fluid in her lungs...not good news!! A second chest x-ray did not shed any more light on the matter. So the PICU doctor ordered a CT scan which has showed some there is some inflammation and swelling in the lungs. We suspect some type of fungal infection so an anti-fungal has now been added to the concoction of medicine. With the antibiotics constantly running through her veins, all we can do is pray that they will combat the fungal infection. Today was the first day that Katie has not has a nosebleed so she hasn't received any transfusions today. She remains on a fairly high volume of fluids, and also, the morphine drip which appears to be keeping any pain at bay. There is a little button to push which will up the dose but Katie seems to be coping just fine.

We are still waiting for the temperature to break, it hovers around 39-40 but fortunately her heart rate is significantly lower. It has fluctated a little bit especially around the time of a particularly nasty coughing fit. But Katie has been resting peacefully since this afternoon and all her vitals seem more stable. Due to her temperature, she has been achey and cold. However, it was nothing that her Dora blanky and a cuddle couldn't fix. I can't believe how well she has been taking all this. She could put any grown adult to shame!

With regards to how quickly Katie's body will recover, we have come to understand that this is just a waiting game. It's not possible to say, at this point, when Katie will return to her hospital room. We are praying that she will be able to leave the PICU by the weekend. Thank you for all the love and prayers!! XOXO

Update from the PICU

2005-11-07T20:44:00.000Z

Katie has been admitted to the Pediatric Intensive Care Unit. Last night started to go wrong when Katie began throwing up around 6 pm and had griping stomach pains. I am talking about inconsolable pains. Nothing could comfort her. Her body emptied out all that was in her bowel and eventually she was passing discoloured water. Heartrate started to increase up to 180 and her blood pressure dropped dangerously low (for you medical people out there, the bottom number zoomed down to 40). Out came the thermometer again and her temperature was through the roof at 40.5 celcuis. Thankfully, today her temperature has been stable at 39.5 celcuis. She is still receiving several different types of antibiotics, medication to stablisise her b/p, fluids and IV pain relief. Katie suffered another major nosebleed and she has just received a transfusion of platelets. That ended up in quite a mess as we couldn't wipe her face in order to not make the bleeding worse. She is doing quite well, seems more upset about the blood than she does anything else. Please keep our baby in your prayers!!

Number 13

2005-11-06T22:22:00.000Z

Thirteen...unlucky for some...but not for Katelyn Benson. We have a Neutrophil count!! Praise God for this blessed news on this "oh so rainy" Sunday afternnon. Together with a slight rise in the WBC, we are convinced that Katie might have turned the corner. ***Does the happy dance despite strange stares from 3 year old daughter***

Now for the less promising news. Katie's weight continues to fluctuate. Some days, she weighs 0.5kg less and other days, she weighs more. For this reason, her TPN feeds have been increased - it's like a milky substance administered through the NG tube. The weight issue is puzzling but the doctors have assured us the scales are medically accurate. We can only assume the high volume of fluids are causing water retention. This would explain the puffy ankles and swollen tummy. We also became increasingly concerned that she wasn't passing much urine. But her upset stomach continues and she is needing her nappy changed every couple of hours. So lots of "number twos" (sorry Katie!!) but not so much urine output. We have added a different direutic and hope this will resolve the problems and flush out Katie's kidneys. The antibiotics are continually being administered every few hours and Katie hasn't had a temperature in over 12 hours. So we are hoping she has turned another corner in that respect. As for the mouth sores, they haven't eased up too much but Katie's lips were all dried out today. I assume her body is starting to process again as her blood counts go up and her bone marrow recovers.

Friday night was difficult for both Katie and Jason. Neither got much sleep as Katie was up with sickness every few hours and both had a cranky day yesterday. I have taken over for the next few days as Jason needs to get back to work. Lucky for me, Katie was so exhausted she slept from 7 pm Saturday until 11 am today and she's doing a lot better. We've been doing arts and crafts and watching some more TV as usual. Of course, not forgetting a few hours on her beloved Barbie website. She's just fallen asleep so I thought I would take this chance to actually reply to some of those emails and sign a few guestbooks. I always sigh when I see my inbox flooded but only because I am worried people will think we're ignoring them if we don't reply straight away. I assure you this is not the case, we just get so busy juggling home life and hospital life. We appreciate all the love, support and prayers. We feel richly blessed that so many people are concerned enough to get in touch. Please keep checking www.katiebenson.tk for regular updates on Katie and crew!! Only by his sufficient grace, Nicole :) XOXO

The bugs strike

2005-11-04T17:56:00.000Z

Despite our prayers, Katie spiked another high temperature and it seems that there is an infection in one of her Hickman lines. Due to her lack of immune system, Katie has been given another strong antibiotic. The doctors keep adding antibiotic after antibiotic. We have our fingers and toes crossed that one of them does the trick and gets rid of the infection. Last night, Katie's stomach pains got worse and she had terrible diarrhea. A sample was sent off to be analysed but thankfully, the results didn't show weren't anything that we didn't already know. The upset stomach hasn't been helped by all the antibiotics. They irritate Katie's stomach lining which is dying due to the chemo. I can't even begin to imagine the pain she is in right now.

Katie's had a few horrible nosebleeds and she's just received a platelet transfusion. Hopefully this will bring her platelet count up a bit, it's been low for the past couple of days. Poor Katie's sore throat seems to be getting worse and worse. She does occasionally ask for food but she just can't swallow it. For now, the NG feeds are sustaining her. But she is trying so hard and she's got such determination, she wants to do everything and she wants to do it now!!! I have no doubt that she will be carried through the hard times. I mean, how could you doubt her considering all the strength and courage she has?!

Regardless of all that she is going through, Katie has remained very strong. She tries to get on with her "stuff" and she is coping so well. Thanks to all these drugs, she is extra sleepy and has been sleeping 16 hours (including naps during the day). When she's awake, Katie's been doing her laps, watching DVDs and bopping along to Mariah Carey on the Ipod. She has a real sense of style when it comes to music!! Just like her Mum, eh? Well tonight she has Jason for company. I am home with Josh to spend some quality time together and maybe I'll catch up on those emails which have been flooding my inbox.

We wish you all a wonderful weekend filled with many blessings. If you have kids, make sure you hug 'em loads and tell them you love them EVERYDAY. Maybe it sounds silly but one day, you will be forever thankful. Please keep our beautiful baby in your prayers!! XOXO

The Katie "experience"

2005-11-02T17:49:00.000Z

We are currently 9 days post stem cell transplant. How is Katelyn doing? Well, she goes up and down. If we're lucky, she will have a good few hours but if we're not lucky, she will be a cranky monster all day long. The thing she hates most is the mouth care but unfortunately is has to be done. As you can imagine, her mouth is like one giant ulcer and she is in agony. Katie received a dose of morphine before her last mouth cleansing "experience" which appeared to help somewhat. But not quite enough to avoid a screaming episode and a near puke fest over the poor nurse who was overseeing the care. Although in Madam's defence, the nurse should have steered well away from Katie's sensitive stomach. Especially as her tummy has been so irritated from the chemo as well as the antibiotics making her feel ultra sick. Or "pukyfied" as Jason so classily put it :) Katie has not spiked another temperature in the last 24 hours. That's good news as temperatures are a sign of infection. We are hoping the "light at the end of tunnel" will start to shine a bit brighter.

Some of you have been asking what are we specifically praying for. Well, apart from the obvious...a miracle cure for Katie with no long-term side effects from the cancer treatment...we are also praying for her to avoid any infections and for her immune system to kick in. Her Neutrophils are down to 0 and we'd like to see those little numbers climing! And her Haemoglobin and Platelets too....she's already required several transfusions in the last week since she received her stem cell transplant.

Thank you for visiting Katelyn's website tonight and thank for the love, support and prayers. I should also take this opportunity to thank God for blessing me with such a beautiful family. It's through the hard times, you appreciate all that you have around you!! XOXO

Happy Halloween

2005-10-31T10:56:00.000Z

We were waiting for this to happen...Katie has spiked a temperature. Blood has been drawn to see if anything cultures but she actually feels not too bad. She's being administered another dose of IV antibiotics as I type this update. I hope to avoid another session of throwing up which usually follows. The doseage of morphine was upped last night and Katie managed to get a solid 12 hours with no waking up. Her face still looks drained but we squeezed a smile out of her today. Unfortunately her throat and mouth are so sore, she can't speak, so we have to go by her facial expressions to see how she's feeling. On the plus side, she did want something to eat over the weekend. She asked for spaghetti hoops...or as she calls them..."sketti hoops" and she swirled a few around the bowl. Ever the optomist, I proudly announced to the nurse that she had mushed up and eaten a whole spoonful. But I got a bump and crash back down to planet earth from Jason (the realistic one) who suggested that, in actual fact, she had eaten only about 3 hoops. Nevertheless, I remain optomistic that she is on the upward climb.

It always pains me to say this, but I was sent the website of a gorgeous 2 year old girl who has recently been diagnosed with Neuroblastoma. Her name is Samantha and please drop by her website to offer your love and support: www.samanthahughes.info

I know I wrote Happy Halloween as the title of this entry but that couldn't be further from the truth for Katie. She is utterly miserable and wants to do home. Already she has been asking for Josh as she wasnted to go trick-or-treating. It breaks my heart to have to say no to her. Please keep praying for Katie and all the other brave warriors!!

Transplant Day 5

2005-10-29T12:55:00.000Z

God grant me the Serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

I thought I would start each of my journal entries with an inspiring quote which I feel it relevant to the latest news. Well, since being in the hospital, we have lost all sense of time. The days roll into nights and back into the days again. I only knew it was the weekend when I heard Josh's chirpy voice down the phone telling me he was looking forward to going back to school this week. I guess with his sister not around, his week-long holiday was somewhat quieter.

We've made it to day 5 and Katie is doing as well as anyone could expect. "Right on schedule" to quote the words of the last doctor we have spoken to. My last journal entry was a bit depressing and not very informative. I suppose that would pretty much sums up how we are all feeling. Katie has devloped mucositis which is a common side effect and it's incredibly unpleasant for her. Due to the a number of sores in her mouth, Katie is in so much pain that she cries out in her sleep. The IV morphine has had some effect but not enough to keep her comfortable for long periods of time. Katie is unable to eat anything so she is receiving all her nutrition intraveneously. Alongside the IV painkillers and feedings, Katie is being administered regular doses of different medications to protect her organs from damage and to prevent other complications. We are forever seeing nurses darting in and out of the room in order for her to receive all these medications. This means neither of us have been getting many hours of "undisturbed" sleep but we are so grateful for the round-the-clock medical attention. Not to mention all the love and support we have received from all the wonderful staff here at the Children's Hospital.

Please keep our baby girl in your prayers!! Thank you for visiting Katelyn's website...we wish you all a weekend filled with many blessings...and of course.....HAPPY HALLOWEEN!!!!! XOXO

A few days on...

2005-10-27T08:11:00.000Z

No one ever said life would be easy, we just didn't expect it to be this hard.

As expected, Katie went rapidly downhill from about Tuesday morning onwards. She woke up with puffy, swollen eyes and was quite reluctant to open them at all. We got a pained look through the slits in her eyes and then she closed them after a few whimpers. Katie's face is white as a sheet and to be blunt, she looks like crap!! The side effects of the chemo have hit her very hard and we are slowly seeing Katie feel worse and worse. We've seen the start of some very painful mouth sores and a very sore throat. Katie's barely uttered two words and she's been asleep for the better part of the last couple of days. Thank God she is getting some sleep and the morphine is keeping the pain down to a minumum...or at least enough for her to rest peacefully. Please keep Katie and the all the other brave "warriors" in your prayers and of course, the angel families, they need plenty of prayers too. We often refer to Katie's cancer fight as "climbing the mountain". Katie was slowly easing herself to the top but now she's slipped to the bottom. However with God's helping hand, we have every faith she will slowly begin to climb back to the top again. Katie, we love you so much and we are so proud of how you are coping!! XOXO

Stem cell transplant

2005-10-24T19:55:00.000Z

They say it takes a minute to find a special person, an hour to appreciate them, a day to love them, but then an entire life to forget them. Take the time...to live and love.

This day will be forever etched in our minds. It can often be referred to a second birthday for patients who receive either a stem cell transplant or a donor transplant. But we don't let Katie hear that it's her birthday or she gets very confused. She's been going through the stage where she declares it's her birthday every single day and goes off singing happy birthday to herself. She even announced it loudly in Pizza Hut one time and landed herself a free ice-cream!! It was cute at first but the cuteness has slowly worn off :) Today - Monday 24th October 2005 - is our darling daughter Katie's second chance of life and boy are we thankful she has been given the chance.

Sorry for rambling off the point, for those who are reading, I am sure you are far more interested in how Katie is doing. Well, I am pleased to say that her Neutrophil count has held pretty steady. I am not entirely sure how her bone marrow is coping with this but it can only mean good things, right? However, we are expecting her counts to drop very suddenly in the next few days. Katie's sleeping patterns remain very erratic but she seems to be functioning on very little sleep. Again, I am not sure how her body is coping with this but like I've said before, she is a tough little cookie. Katie received her previously harvested stem cells today at lunchtime. She received them through her Hickman line, much like a blood transfusion. It was a quick process and Katie was almost half-asleep! Before she got her stem cells, she was prepared with drugs including Piraton to combat a reaction which is not disimilar to a anaphylaxis reaction. Fortunately she had no respiratory problems and the entire procedure was over fairly quickly. Already we can smell the sweetcorn smell which is a common side effect of the transplant process but we have already got used to the smell.

Please say an extra prayer for our Katelyn to tolerate what lies ahead for her in the next few weeks. We are so blessed to have such a wonderful family and group of friends!! XOXO

The last day

2005-10-23T13:19:00.000Z

Katie is scheduled to receive her stem cells back tomorrow. The process is fairly simple. The previously harvested cells are given back to Katie through a drip (IV line) in much the same way as a blood transfusion. It can take a number of weeks before the cells "find their way" through the bloodstream to the bone marrow and start to create new blood cells. Medically speaking she is right on track. We expect to see her blood counts delepeting and we understand she may require more frequent blood and platelet transfusions after the transplant process. The actual day of tomorrow won't be the hardest part compared to this last week and also she has a tough few weeks coming up. She is at risk for serious infection hence the isolation and lack of visitors.

Josh is taking this all in his stride. He understands that Jason and I have to alternate and his behaviour has been impeccable. Katie has also calmed down somewhat. I am one hundred percent convinced it was the anti-nasuea medication turning our happy, complacent child into an absolutely monster. Or maybe its just an accumulation of all she has been through in the last five months? Typing that sounds strange, have we really been in this scary world for almost half a year? Well, I am off to watch another episode of Dora the Explorer. Please say an extra prayer for our Katie's transplant tomorrow!! XOXO

Another weekend

2005-10-21T20:08:00.000Z

I find it hard to believe we have spent one week in the hospital already. Katie is doing relatively well. If we're lucky, she will have a good fews hours after receiving the meds which seem to calm her. As the days have gone on, the good time has been decreasing and the mood swings have been increasing. The hardest thing has been controlling her moods and keeping her occupied. For a usually peaceful and content child, we are seeing the total opposite. She is unhappy, cranky and already wants to go home. I can tell we have a long few weeks ahead of us. To top it all off she had a bad night. I rocked and sung her to sleep like a baby but she didn't nod off until 1 a.m. and she was up and raring to go before 9 a.m. - let me tell know, 8 hours of sleep is just not enough for a 3 year old who is having such intense treatment!! And she wouldn't take a nap longer than a quick 20 minute breather!

Please keep praying for our sweet princess Katelyn!! She is so miserable and all I want to do is grab her and run far away from the hospital. My heart is so heavy watching her go through this torture. My thoughts constantly run back to the families who have lost a precious child. I am extremely grateful that Katie is here with us and fighting with all her might. I have been blessed with a beautiful family who have carried me through. I am still putting all my faith in God tonight, as I declare everynight as I pray on bended knee. XOXO

Miserable few days

2005-10-20T08:48:00.000Z

Sorry for not updating the journal last night. Jason and I are doing alternate nights with Katie while the other stays with Josh. We are trying not to alter his routine which we have spent much time implementing. The Bensons like to be organised and to run as efficiently as possible :) We are in complete isolation and this is where we feel very blessed for the organisation which we love so much. Everything must be 100 percent sterile and Katie is on a "neutropaenic" diet as certain foods are not safe for a patient with such a compromised immune system. Also, we are not able to have any visitors. I think it goes without saying that Josh and Katie are missing each other like crazy. It breaks my hearts to tear my family apart but Josh knows, as well as us, that we would walk to the ends of the earth if need be. Katie is feeling miserable and lonely. Poor baby has only her Mummy and Daddy for company. She has been very sick and the most excitement she gets is to watch a new DVD. The only change of scenery has been to the toilet as her bladder and bowels are working overtime. The anti-nausea medication makes her grumpy and, at times, quite angry. We are keeping on tenderhooks as we don't know when her mood will change. We are praying for a better day and for Katie's comfort. Goodnight to our dear family and friends!! XOXO

One step forward

2005-10-18T08:35:00.000Z

Today has been a little better than yesterday for Katie. She's had much fewer bouts of sickness and overall, she seems more willing to play and do her normal stuff. We expect to see her blood counts plummeting and then I guess she will start to feel worse again. It is such a horrible, vicious circle. We've done lots of chatting on the phone to Jen, Nana, Papa, Mema, Grandpa, Aunty Louise, Miss Tori, David etc. Apart from keeping ourselves occupied, I imagine we have run up a huge phone bill!! Katie is still eating very little but continues to watch intently when others are eating. She has developed a new-found fascination with food yet she is eating very little herself. It is extremely hard to see but she is fairly happy so I can't complain too much. I am amazed at how how well she is tolerating the chemo. I am constantly worrying about her emotional state but she is such a resiliant child. We could work ourselves crazy on what might happen in the future but we are aiming to concentrate on the here and now.

In a nutshell, we are trying our best to "hang in there" and "stay strong" but sometimes its hard and there is no knowing when any of us might break down in tears. Tonight I place all my faith in God's hands and trust he will see our family through the tough times ahead. Good Night & God Bless! XOXO

First dose of chemo

2005-10-17T17:37:00.000Z

Katie's magic sparkle has already disappeared into the depths of existence. It's almost as if it never existed in the first place. She woke up bouncing around and full of beans. This morning she received her first dose of chemo and within hours, she was on the bed in tears. It breaks my heart seeing her cry those silent tears, her shoulders shaking. Never a single complaint comes from that little girl's mouth. She is so brave. Already she has had some sickness and diarrhea. Her tummy has really been bothering her, she complains its feels like it is full of air bubbles. Although the surgeon did say everything was healing as it should, we had the doctor-on-call come and take a look at her. The scar has healed nicely and it is no cause for concern. It's just that horrible high-dose chemo which has irritated her stomach lining (as she hasn't eaten a morsel since last night). We are very grateful for the wonderful nursing staff who have taken every extra precaution with our Katie.

We send so much love to our sweet friend Gracie who has sadly relapsed. Her parents are exploring treatment options but things look bleak as the cancer has already spread throughout her small body. Please keep Gracie and all the other brave cancer warriors in your thoughts and prayers. Take care everyone. Thank you for visiting Katelyn's website. We also wish to thank our family and friends for being a constant source of support!! XOXO

Last one from home

2005-10-16T10:23:00.000Z

The bags are packed and are already in the car. In the last 5 months, we have accumulated more "stuff" than I ever thought possible. Of course, in true Katie style, she wanted to transport her entire bedroom to the hospital. This has not been quite feasable, I explained only certain things can be taken with. While Katie is in isolation, everything will have to be sterilised. Being the super cleaning freak that I am, I imagine this should not be the biggest obstacle that we have to face. We are due at the hospital in the afternoon but she won't receive the first dose of chemotherapy until tomorrow. I was praying and hoping that we would be able to go in tomorrow and start the chemo right away but we have to be there tonight. So I am thinking we will have a relatively peaceful and quiet night. Although this is Katie we're talking about, so you never quite know what to expect :)

Our precious daughter has a hard fight out ahead of her but she's tough and we know she can do this. Specifically, we have been praying for Katie's peace and understanding, for her to be able to rest and to be in as little pain as possible (or please God no pain what-so-ever), for very few side effects (eg: mouth sores) for no short-term or long-term damage to her organs, for her bone marrow to recover quickly and lastly, for her to out of isolation and back home as soon as possible. We know Katie's "prayer warriors" have been on her side since day one and we are so grateful. She truly does have angels watching over her. Please don't stop storming the heavens for Katelyn's miracle cure!!

I will try and update the journal more often than I have been doing. Thank you for visiting our Katelyn's website and THANK YOU for all the love, support and prayers. God Bless!! XOXO

Stressful week

2005-10-14T18:31:00.000Z

This journal entry has the potential to be one of those which just oozes out the words "grab yourself a cup of coffee and make yourself comfortable" ................... Contrary to popular belief, we have not fallen off the face of the planet. Nor has the centre of earth opened up and swallowed us whole, as my dear friend Laura so tactfully put it :) The Benson family have just been super busy and I didn't manage to find a spare moment to myself. Every free minute has been spent enjoying the company of my beautiful children and wonderful husband.

Katie has now completed all the nessecary testing that is required before the stem cell transplant. The mega-high dose chemo can cause organ damage and these tests are conducted to establish a base line. Katie had another GFR (kidney test), a hearing test, an Echocardiogram (heart test) and an EEG - as the chemo can cause fits (seizures). I believe Katie will be given an anti-seizure medication, amongst many others, to prevent this from happening. I am pleased to say things were fine with the EEG....if any of you remember Katie had a seizure during her induction chemo which was some cause for concern. Katie's also had her regular appointments for a blood test and a general check-up. Things are looking good. Her counts are steady and she is feeling well. We did see a dramatic weight loss in her but it is stable now, praise God and although she still looks terribly frail, we are delighted in that she is no longer losing weight. It has been quite worrying as Katie was losing weight despite the nightly NG-tube feeds. She is still not eating very much and very often. It is still a huge worry but currently, is it not our primary concern. We have bigger fish to fry (no pun intended!) with the transplant coming up extrememely fast.

We are planning to enjoy this entire weekend together as a family in our own home. On Sunday, Katie will be admitted back to the hospital for the chemotherapy to start first thing on Monday. We had originally thought we would have Sunday night at home but now it seems otherwise. It's just 2 more sleeps until its back to the hospital for anywhere from 4 weeks to 12 weeks. Who knows? We sure don't but we are leaving it in God's capable hands.

On one of our hospital mad department-dashes, I realised I had left my phone in the toilet by the sink. When we went back to get it, less than 10 minutes later, it was no longer there. I guess someone thought they needed it more than me! It takes a special kind of theif to steal the mobile phone of a parent who's child is undergoing cancer treatment in a children's hospital. I will have to be more careful next time. Katie couldn't quite grasp the concept of someone taking my phone. She said to me "but they didn't ask to borrow it Mummy!" Oh, how I admire her sweet innocence for life. I am so grateful in that she doesn't understand much about the wrongs of the adult world. At the tender age of 3, she has accepted her cancer treatment and all the limitations that it brings. No questions asked and I rarely hear a single complaint. On days of weakness, I can only thank God for blessing me with a brave daughter who displays endless courage and amazing resiliance.

We hope everyone has a wonderful weekend. This is an extended good night "thank you" message from all of the Benson family. We appreciate every single one of you for being an endless source of love and support. Additionally, we are extremely grateful for every single prayer which has been so graciously sent up to heaven on behalf of our precious daughter. God bless our family and friends....WE LOVE YOU XOXO

Here we go...

2005-10-07T16:14:00.000Z

We have had a bit of excitement and it came in the form of an Ipod!! Jason thought it would be a great idea to store our entire music collection onto this tiny machine. Katie and I love bopping along to the latest hits and an Ipod is a lot smaller than grabbing a bunch of CDs which is what we usually do on the long days in hospital. One problem...I am a slight technophobe and I am struggling to make it "play music". Fortunately, I have a 5 year old son who will make a great husband some day. Josh loves electrical applicances and he proudly showed me how to work it all out. Coincidently, he also likes to fix household appliances also. Someone (naming no names...........Katelyn!!) broke the fridge light and when we got home, Josh ran up to me and announced he had fixed it. Lo and behold the light turned one when I opened the fridge door. We are still baffled as to how he managed that one!! Josh was feeling a lot better and we sent him to school today. Then we got a phone call at 10 am and I was thinking "oh no! what's wrong now?" and I had to pick him up because there was no water supply at school. All that money we pay and for what, eh? Oh well, I guess that means we have to include one extra person for our weekly Friday lunch pizza take-away.

Onto the medical news...we managed to speak with the surgeon regarding the pathology report. Apparently everything looks good and the tumour was "mature". There was still some remaining cancer which couldn't be removed by the surgeon. These "spots" will be irradiated when Katie undergoes her radiotherapy treatments post-transplant.

Speaking of the stem cell transplant, we have been given a provisional date for admission which is Monday 17th October. In the next week or so, Katie will undergo a number of tests including another CT scan, also tests to establish a base-line; heart and kidney function tests, and an EEG to test base-line brain fuction. The mega high-dose chemo can cause damage to all the major organs. Some of these will be a repeat of the tests conducted prior to the end of the induction chemo protocol. We are praying extrememely hard for the chemo not to have any long-term effects on Katie's major organs. Lastly, I think it probably goes without saying that we are absolutely dreading the stem cell transplant. We've heard some horrifying stories. Please pray, pray, pray!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We're still alive!

2005-10-05T15:56:00.000Z

I just wrote up two updates and now they are both floating somewhere in cyberspace. Hand on heart, I promise to duplicate all the latest medical news sometime in the next day or two. I have my hands full as both Katie and Josh are home. Josh has a sinus infection, it took two trips to the doctor to finally get a diagnosis. I had to literally beg for them to give him antibiotics, ugh!! He's feeling a lot better but it is unlikely he will be back at school for the rest of the week. Katie is getting used to sharing Mummy with her brother but she is not liking the lack of attention. Forunately, Josh has a very laid-back attitude and demands very little time and energy. Jason and I have been blessed with two extremely wonderful children.

Please remember to keep all our friends and their families in your prayers. Little Madison aged 4 became an angel yesterday morning. Her website: www.caringbridge.org/la/madison was posted on the Neuroblastoma email listing. We are always so sad to hear news of this monster taking another innocent life. Also, our little friend Paige still needs your prayers too! www.caringbridge.org/visit/paigewallis

Thank you for visiting our daughter's website. Please don't stop praying as our Katie fights for her miracle cure!! XOXO

Up and down

2005-10-02T15:03:00.000Z

After Friday's upbeat and positive update, I am sorry to say that things took a nose-dive. Katie woke up feeling achey and unwell. She looked extra pale and she was more sick than usual. Apparently, the regular bouts of sickness come with the territory. But then, Katie did a complete 180 and started feeling better at midnight, yes midnight! She didn't want to go to bed until almost 1 am and didn't wake until midday. We had one very upset little girl when she realised her Daddy and brother had already gone to football. Praise God she is feeling somewhat better and has been resting on the couch for most of the day. Again, all fingers crossed that she was just having a bad few days and I am praying she will be back on top form. I often have to slap my wrists and remember it was less than 2 weeks ago that this child underwent a huge surgery. Katie is so fiesty and strong, she gives the impression things are hunky dory. But the reality is far from the fantasy, Katie still has a long way to go and the worst is yet to come.

We are due back at the hospital tomorrow for a check-up and for a blood test. Hopefully we will be able to speak to Katie's consultant and find out what the pathology report says about Katie's tumour, which was sent off for evaluation. Also, we will be told the date for her to be admitted to the hospital for the stem cell transplant. Katie could be spending anywhere from 4 to 12 weeks in the transplant unit at the Children's Hospital. So, we are making the most of our time at home. Katie still has to endure all the pre-transplant tests and scans etc. I guess we are going to be quite busy in the next couple of weeks. With any luck, there will be no overnight stays in the hospital.

Please keep our friend Paige in your prayers (website address in a previous journal entry) as she was admitted back to the hospital. Thank you for visiting our daughter's website. Please don't stop praying as our Katie fights for her miracle cure!! XOXO

All that JAZZ!!!!!!!!!!!!!!

2005-09-30T19:40:00.000Z

As brave and bold as ever, Katie is doing extremely well. Thank you God for this precious miracle who continues to amaze us on so many levels. It is absolutely wonderful to be home and we are so overjoyed to know we will be able to spend some quality time as a family. Pending no other medical emergencies (our fingers and toes are crossed!) everything else should be done without us needing to admit Katie to the word. By "everything" I mean, all the tests etc required before the stem cell transplant. I was reflecting back and I'm stunned that it is almost October. Josh and Katie are avidly awaiting Halloween. Josh has already decided he wants to be Spiderman, so no surprises there! Our little darling is thinking she might like to be a fairy-princess-ballerina-mermaid, so if anyone has any ideas of how she can make that happen, please let me know! :) Katie is almost 100 percent back to her normal self. Some people would say our daughter is fiesty and stubborn and that these are her negative qualities. However I believe these are the perfect characteristics which have carried her through her illness and treatment.

In case you are wondering about the title of this post, today we watched Chicago and Daddy Day Care and The Little Mermaid (hence part of the idea for the Halloween costume). I was getting a little concerned that our eyes might glaze over from the TV screen so Katie suggested we play on the Barbie website instead. From one screen to another. She really makes me laugh :)

We hope everyone has a wonderful weekend. Keep smiling...keep shining...and keep believing in miracles. Thank you for the continued love, support, prayers...and all that jazz!!! XOXO

Time for rest

2005-09-28T07:10:00.000Z

Once Katie has got going, there is no stopping her. Since Monday, she has just flourished and she's doing really well. We've been making regular visits to the playroom and taking many leisurely strolls. Each day, we've been getting a little bit further and I mean that in more respects than one! Yesterday we got a surprise visitor to the hospital. It was Grace and her Mum Leah (who's arms were bursting with presents, by the way, THANK YOU!!). Katie's face burst into a huge smile and Gracie's did exactly the same. That was most definitley a Kodak moment and it was also the moment when my camera chose not to switch on!! It was a refreshing burst of reality for everyone. And, might I add, very kind of Leah to bring her daughter back to the place she dreaded most. Yes, I think its safe to say, we have been very blessed :)

As for medical news...well...there really hasn't been a lot going on. Katie is slowly healing and will continue to do so for some time. Her pain has greatly reduced. She will have the next few weeks away from hospital to rest and recover. Then, it she will be admitted back for mega high-dose chemotherapy followed by her stem cell transplant. So, we will be making the most of our time at home. Katie is eating regularly and having regular bowel movements. She acts in a fairly normal manner, as if she has not just undergone a huge surgery. Its just so wonderful to see her feeling so well. We are going home today :)

I apologise if my updates become less frequent. Sometimes I don't have much to say on the medical front and I don't want to bore you. I promise to update with any news as and when I get it. Also, if you click on "comments" below this post, you will be able to leave us a little message if you wish. Thank you for visiting our daughter's website. Please don't stop praying as our Katie fights for her miracle cure!! XOXO

Katie's miracle steps

2005-09-26T12:03:00.000Z

Katie is making small but significant steps towards recovery. Slowly, she is wanting to sit up more and sleep less. Today has been the best day all week. Katie slept 15 hours and didn't wake until almost midday. She was in quite a bit of pain but after a dose of morphine, she perked up and has seemed to regain her endless source of energy. I can tell that she won't be getting an early bedtime tonight, she's probably filled her sleep quota! We started with a slow walk around the ward and ended up in the playroom. What an achievment! The biggest event of the weekend was when her bowels started working which means her digestive system is recovering from the surgery. Praise God!! Discharge from the hospital will not happen until Katie is eating and having regular bowel movments and we have to wait and see how she copes without the morphine so often. But so far, so good and maybe we will be breaking free in the next couple of days.

We wish everyone a wonderful week filled with plenty of sunshine and joy. This goes especially for all those beautiful and brave children who are fighting this vicious monster. Not forgetting our precious angel families who continue to need our love and support as they endure such immeasurable heartache. Thank you for visiting our daughter's website. Please don't stop praying as our Katie fights for her miracle cure!! XOXO

Everlasting spirit

2005-09-23T16:21:00.000Z

Firstly, we wanted to say a huge thank you for the endless love, support and prayers. Now for the medical news: Katie's kidney is functioning well and once her low blood pressure had stabilised, we were given the ok to transfer her back to the ward. We only expected 24 hours in the PICU but ended up with an extra day due to the slight blip in Katie's blood pressure. Katie's little body went through a huge surgery on Tuesday and we are so grateful that she is in the midst of a healing process as we've heard some scary stories.

Katie's epidural gave her adequate pain control in the initially after the surgery. It has now been removed as well as the cannula in her hand. For pain relief, Katie has been given oral morphine via her NG tube which seems to be keeping her comfortable. She has gradually returned a bit back to her normal self and even wants to watch some TV. The surgeon dropped by to see how everything was going. The tumour cells were sent off for evaluation and we should know the report in a week or two. He was so lovely with Katie, we are only full of praise for this wonderful surgeon and his healing hands. We aren't expecting too many visitors over the weekend. Hopefully Nana will bring Josh for a visit but Katie's still needs to take it easy. Having lots of people around makes her very aggitated. She's much happier when it's only Jason and I, she has made this very clear on several occasions. Leave it to our Katie to be the one who always lets the doctors and nurses know exactly whats on her mind. Not even healing from a big surgery was going to get in the way of that! We are so blessed with Katie's forceful nature and ability to adapt to whatever life throws at her.

I only had a brief chance to check on our online friends but I managed to see little Paige's website. She's doing really well! Her website address can be found in a previous journal entry. Please keep praying as our Katie fights for her miracle cure!! XOXO

The power of prayer

2005-09-22T07:45:00.000Z

For each and every day that we are blessed with Katie's presence, we thank God. We continue to pray for our daughter and all the other families affected by cancer. Medical news: Last night, Katie's blood pressure dipped quite low and as it did, her heart rate and respirations slightly increased. This is not an unusual complication after such major surgery. She was treated accordingly with the correct medication and her blood pressure is stable today. Praise God!! After 48 hours of intensive monitoring in the Pediatric ICU, Katie has returned to the ward. She is still quite uncomfortable although she seems somewhat calmer than she did in the PICU. We have yet to hear her squeaky little voice chatting with us as she's so quiet and barely spoken. Katie looks quite well, she is still retaining a bit of fluid. Please keep praying as our Katie fights for her miracle cure!! XOXO

Surgery update @ 9 pm

2005-09-20T21:16:00.000Z

This morning Katie was taken down to be put under anaesthetic at 8 am. The surgery took an agonising 5 hours. Although we received regular updates, there was no stopping the anxiousness and the occasional tear (or two!!). We finally saw the surgeon early in the afternoon. He said Katie was doing well and he managed to remove the tumour and the kidney as planned. It was touch and go with the kidney as he had to check the other one was functioning properly and it was. There is a small amount of disease remaining but he is confident it will be mopped up with the high-dose chemo before the transplant. Shortly after, we were taken to see Katie in Pediatric ICU. She looks so small and has wires coming out of every part of her body. For now, she has an epidural for pain control and a catheter. Katie's lips and mouth are very dry and she's been asking for a drink. But she will remain nil by mouth for at least the next day or so due to her intenstines being handled during the operation. Katie is very quiet and subdued. We continue to pray for things to run smoothly.

Thank you for storming heaven with prayers for Katie. A miracle cure is on the way and we expect nothing less. Please remember Paige in your prayers as it's her big surgery tomorrow. We have every faith that she will sail through just like our Katie. Thank you!! XOXOX

Full steam ahead

2005-09-19T07:37:00.000Z

I don't usually update before the day has even begun but I wanted to let you know that Katie's surgery will be going ahead as scheduled. I have phoned the hospital and a bed is still available in the Pediatric ICU. We are due in the hospital in the early afternoon for pre-surgery arrangements, signing forms etc. Katie will be taken down to the operating theatre first thing tomorrow morning (20th September). Please remember our sweet friend Paige in your prayers. Paige is just 4 months old, she has Neuroblastoma Stage 4, just like Katie. Her big surgery is on 21st September. Please visit her website www.caringbridge.org/visit/paigewallis

Katie woke up this morning and said "Mummy, I feel funny". Well, Miss Katie, I feel "funny" too. I have butterflies in my stomach and I've spent the last hour on my knees in prayer for all the beautiful children who are sufferently unrelentlessly at the hands of this monster. I also praised God for blessing us with such a wonderful daughter. She is full of courage and resilience, I have every faith that she will come out fighting as she has done in the past. There is NO greater healer than God. Please keep stop storming heaven with prayers for Katie and Paige for a successful tumour resection, speedy recovery and of course, for them BOTH to reach an ultimate miracle cure. Thank you!! XOXOX

Mini Update

2005-09-18T12:08:00.000Z

Katie has been doing fine. (No news is good news as they say...) Since my last update, Katie got a blood transfusion and then platelets today. When we were in the hospital, we checked to see if things were to still go ahead with her surgery on Tuesday. We were told to call tomorrow to check a bed to see if a bed is still available in the Pediatric ICU. Jason returned home on Thursday evening and the kids waited up till almost midnight for him. His birthday was on Friday 16th September. "HAPPY BIRTHDAY DADDY!!" He seemed to like his presents and he even missed us a little bit while he was away :) We had some family over for a nice meal to celebrate his birthday in the evening.

I just wanted to add a quick note that there was some confusion over some things I may have posted in my journal? I wanted to say, if anyone has any questions, please feel free to direct them straight at me. I don't offend easily and I am happy to get back to anyone as soon as possible. Please understand I often post the updates at unearlthy hours and type the words as they come out so things get jumbled and confused.

We appreciate all the love and support more than I could even begin to tell you. Please don't stop storming heaven with prayers for Katie's surgery on Tuesday. Thank you!! XOXOX

Little Ballerina

2005-09-14T21:11:00.000Z

Katie is feeling quite good. Over the weekend, her permanent sickness appeared to cease. Monday morning saw me sitting in the bathroom at 4 am holding Katie in my arms as she wretched into a large bowl. Sorry to get so graphic but unfortunately that's life for the Benson family. The day usually goes on as "normal" although Katie's sickness can strike up to 3 or 4 times a day. It's certainly very unpleasant for her and makes her feel quite yucky for a few hours. But nothing can hold this girl down! This afternoon, she went to The Dance Academy and got to watch all her little friends doing Ballet. Everyone was so accepting of Katie's appearance, no one batted an eyelid. I know some people find it hard to see Katie....bald, skinny, pale, NG tube et al. But we appreciate it so much that people don't treat her any differently. Katie has cancer but the cancer is NOT what definies Katie. Inside, she is till the same beautiful, loving child with so much love to give. Anyway, back to what I was saying....I didn't realise that our Katie is very popular down at her dance classes. The little ones all ran up to her and gave her lots of hugs and kisses. I wanted to say an extra special thank you to Diane and everyone for allowing Katie to come and watch the dancing this afternoon. It really put a bright smile on her face.

We hope everyone is having a good week. Thank you for visiting our daughter's website. It would be great if you could please sign the guestbook and let us know who you are. Please keep storming heaven with prayers for Katie's surgery on Tuesday. Thank you!! XOXOX

Frantic madness

2005-09-13T15:00:00.000Z

Katie's latest blood counts are good. She got a transfusion of platelets and had no allergic reaction (thank goodness!!). We even managed to be in time to collect Josh from school. This was despite the frantic phone calls inquring after a "back up plan" in case we were running late. We managed to scoot out of the hospital in plenty of time but my saving angel (Jen, of course....who else?!) was waiting patiently at the school gate. Fortunately she informed me her journey was not in vain and it was worth it to see the super grin on Katie's face.

Katie gave me a bit of a scare last night when she started complaining of a headache. When I was soothing her with a cool towel, I noticed her head felt warm and she had a slight temperature. Of course, I went into panic mode again and started creating a plan of action in my head. I phoned the hospital who told me to check it regularly and call back if it persisted or got any higher. But after a dose of calpol, it was back to normal and Katie wanted to go to bed. Whatever it was, she obviously slept it off and she felt right as rain when woke up in the morning.

This week Jason is away on business in France. He's left both our children under the sole responsibility of yours truly. Yikes!!! He went on Monday and won't be back till Thursday. Never before have I appreciated the extra pair of hands as much as I do now.
WE MISS YOU DADDY!!!!!!

We wish everyone a good week filled with lots of happiness and sunshine. I have my hands full but I will update again soon. Things are going well here and we are pleasantly enjoying each others company. Please keep storming heaven with prayers for Katie's big tumour surgery next Tuesday. Thank you!! XOXOX

Pause for reflection

2005-09-11T14:02:00.000Z

The Benson family have been taking a bit of a breather. The less time Katie spends in hospital, the more we see of her old personality shining through. The weekend has been fairly uneventful. Knock wood!! Although it's only 3 pm on Sunday afternoon and there is always time for something to disrupt the peace. I am very pleased to say it's been over 48 hours since Katie was last sick. This is quite a milestone in her book. Every single day without fail, she has woken and been sick at somepoint during the day. Fortunately she has been blessed with feeling good this entire weekend. Praise God!!

We are hoping for a quiet week for no further interuptions. Katie continues to have her blood counts checked every few days. Unfortunately, Katie's blood counts are taking longer to recover from the last rounds of chemo which knocked her extremely hard. Despite being off chemo for a while now, Katie's platelets have remained quite low. We are expecting to continue with a few transfusions (blood and platelets) per week. We know that after the stem cell transplant transplant, she will need more frequent transfusions. But we will cross that bridge when we get to it. We are living for the moment and just enjoying life. We take each day as it comes and that's probably the best advice I can give anyone in our situation.

I thought I would add a little note as we reflect back on the day which marks four years since the tragedy of September 11th. Our thoughts and prayers remain with the families who lost a loved one in the terrorist attacks. We pray for their continued peace, strength and understanding. I have been reminded of something which my dear Grandmother once told me "Where ever you are, where ever you go and whatever you do, take a good look around you. There is always someone who is suffering more than you. Pray for them."

Enjoy the rest of your weekend and God Bless! To all our family & friends....thank you for the endless love and laughs. You keep us smiling and you keep us sane. I don't know where we would be without you guys!! Please keep believing in miracles for our Katelyn XOXOX

Have you seen this girl?

2005-09-10T22:46:00.000Z

Roll on the weekend

2005-09-09T16:42:00.000Z

Katie's stem cell harvest took place on Thursday 7th September. They re-harvested again today as they only got 75% of what they needed from the first harvest. Katie spent 2 days attached to the apherisis machine for over 4 hours each time. As always, she took it in her stride. On Thursday, the Hickman line in Katie's chest was causing us some grief. It appeared to be blocked and wouldn't let blood in or out. We were concerned that Katie would be in the position of needing another surgery to insert a temporary line to harvest the cells. In the end, we managed to unblock the line and the rest of the day ran smoothly. The Hickman line gave us no trouble for the second harvest. We are very fortunate in that Katie now has more than enough stem cells to be stored in preparation for her stem cell harvest which will be in October.

This afternoon, Jason and I went to donate blood. The last time we donated was shortly after Katie's diagnosis. I would urge you all to please consider blood donation. It's such a simple procedure but it really can save literally millions of lives. I shudder to think what position our Katie would be in if it weren't for all those strangers taking time out of their busy lives to perform an act of complete selflessness. If anyone is scared of needles, we would be more than happy to let you take Katie with you for moral support. She may dislike swallowing medicines but she's a real champ when it comes to be being poked. If that little face cheering you on doesn't make you less afraid, then NOTHING will!! :)

We are hoping for a quiet weekend with no mishaps. These include....catching toes under doors, falling off trampolines, tripping over, bumping heads, having allergic reactions to platelets, emergency hospital admissions and the list goes on....Katie's having her blood counts checked again over the weekend but she's just been transfused so hopefully we will be able to steer clear of the hospital for a while.

Take care everyone. Thank you for visiting Katelyn's website.
Good Night & God Bless!
Nicole, Jason, Josh & Katie XOXOX

Just to say "hi"

2005-09-07T13:00:00.000Z

Katie's CD34 count has finally risen high enough for the stem cell harvest. It's up to 30!! This process will take place tomorrow and Katie will be on the apherisis machine for around 4 hours. Basically, once attached, Katie's blood goes from her Hickman line into the machine. The process called apherisis is the separation of the stem cells from the blood. In the machine, the blood gets "spun" in the machine and then returned back into Katie's body. I hope I explained that correctly!! With any luck, they will harvest enough cells so Katie won't need to be on the machine for a second or even third attempt.

Since my last update, Katie has received a transfusion of both blood and platelets. Her haemoglobin was down to 7.6 and her platelets were very low (I can't remember the exact number off the top of my head). Katie had a bad allergic reaction to the platelets and although she's had an allergic reaction before, it's never been as bad as this. The coughing started pretty much as soon as Katie started receiving the platelets. This progressed into itchy skin and by the end, Katie was bright red and clearly very distressed. In the end, we all spend the day in hospital after the nurse gave Katie an antihistamine injection. Well, that was our weekend "excitement". We've come to realise that it's always something with Katie. Let's hope that this week will be somewhat quieter with less of these scary episodes.

On Tuesday, Jen came over with her boys as they haven't started school yet. So, Katie got to have some good ole rough and tumble with Jen's "big" boys who treated her like the queen that she is!!! Later in the evening, Aunty Louise brought her gang over for a take-away. We had chinese and it's usually her favourite but Katie hardly made a dent in her rice mountain. This was despite insisting (many times!) that she wanted "lots and lots of rice". She's going through a very picky phase and it's a real struggle to get her eat. The nightly feeds through her NG tube have been sustaining her weight up until now. In the last few days, Katie has dropped another 0.5kg. Although, both Katie and Josh have been very active (on the trampoline etc) so this most likely has something to do with it. I have to say that I do miss making my baby her favourite pasta with cheese sauce!!

Josh went back to school on Monday. He is having such a blast!! He wasn't exactly very forthcoming with information but slowly we've dragged it out of him. I know Katie is a little sad at the prospect of not going back to nursery with all her friends. Even more so because she knows she won't be able to go back to her dance classes. We are constantly praying for Katie's strength and understanding as she faces all these new issues both physically and emotionally. We were saddened to hear news of the extreme devastation caused by Hurricane Katrina. Our hearts go out to the victims and we would kindly ask you to remember these families in your prayers. I know that Katie's faithful followers have lifted her up in prayer countless times and I have every faith the same can be done for the hurricane victims. Thank you!

Take care everyone. Thank you for visiting Katelyn's website.
Good Night & God Bless!
Nicole, Jason, Josh & Katie XOXOX