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A BLOG FROM KELCEYS MUM........

Update on Kelcey Roberts #1 (19 December 2009)

This is the first update on my daughter Kelcey and her journey through her cancer treatment. I have resisted setting up an email update system as I did it with my breast cancer treatment experience in 2007 and I thought our family had ticked that box and that we were getting on with our lives. But we’re here again. Only this time it’s Kelcey and her treatment is going to make mine look like a walk in the park. It is every parent’s worst nightmare. It’s unfair and we can’t believe it’s happening to our daughter. She can’t believe it either. Prior to Thursday 3 December, she was a busy, happy, ‘healthy’ 9 year old who had just got back from a family holiday in Fiji. Five weeks prior, I had taken her to the GP with one swollen gland on the side of her neck. As she was well, he said to come back if more appeared or if she became unwell. Regardless, I was to return to the doctors 6 weeks later if it hadn’t disappeared.

On the 3^rd of December, I was taking her and Maclain to swimming lessons and I asked her if the gland was still swollen. She told me that morning she had noticed she had more of them. I wasn’t alarmed, she still did her 45 minute swimming lesson and then her and Maclain went on the hydro-slide. We then went to the Accident and Emergency Clinic at the local hospital. They did a blood test for glandular fever and then a chest x-ray. That showed a large mass of swollen lymph nodes in her chest. We were told to go the Starship Children’s Hospital and by Friday afternoon we were in the Paediatric Oncology Ward. Unbelievable. She has been diagnosed with T-cell Acute Lymphoblastic Leukaemia. The first week in hospital was awful, because of the mass on her chest she wasn’t allowed a central line so she had lots of iv lines and blood tests. Lots of needles, lots of oral meds, lots of general anaesthetics for lumbar punctures and bone marrow aspirates. She has had two nasal gastric tubes put in because she stopped eating and drinking and we were having difficulty getting her oral meds into her. But the nasal gastric tube felt so awful for her that she stopped speaking and communicating and had a horrible ‘dead’ look in her eyes. It was heartbreaking. She had to cope with going into hospital feeling well and becoming very unwell from the procedures and treatments. Hard stuff for a 9 year old to understand. Chemo started on the Monday and is being repeated weekly. She will lose her hair soon.

We are currently in the ‘Induction’ phase of her treatment. There are still lots of question marks over exactly what type of cancer we are dealing with. Each week we get more information. Kelvin and I are struggling to cope with all the information but are supporting each other and Kelcey and Maclain the best we can. They are our priority. As we are getting in excess of 50 messages a day, it is honestly impossible for us to contact you all and update you. We are full on with both our kids. There is no down time and we are not happy to have anyone else look after Kelcey at this stage other than the two of us. She doesn’t want anyone else. We came home on the 16^th of December and although she is still vomiting a lot and feeling very unwell, I think it is a better environment for her. We will spend lots of time in hospital over the next few months. Although the treatment plan is not confirmed yet we are looking at two years plus regardless. I have resigned from work and will not work again until Kelcey is back at school. Kelvin is not working at the moment either, the Police have been awesome. I’m lucky to be a school teacher so home schooling isn’t daunting at all. Kelcey is a bright little girl and we will have lots of support from the correspondence school system until she is able to go back to school.

Updates: I will send them when I’m able. No need to reply to the updates, we honestly ‘feel the love’. The support we have received has been incredible. I know it’s frustrating for many of you who want to help and don’t know how. In my next update I will think creatively of what we need. I’m not proud this time, I’ll be honest and ask for help. We need all the support we can get. Can you please update my contact details too.  I will update you all next week. Thanks for all the messages, I’ve read/listened to them all.  A big thanks to all the fab people who have dropped off meals and everyone who has given Kelcey gifts and cards. Tracey

Update on Kelcey Roberts #2 (27 December 2009)

Hi everyone, hope you all had a great Christmas. We are still at home. Kelcey is definitely more comfortable and able to have more options at home. She is still extremely tired and still has bouts of nausea. She lost nearly 4 kg in hospital and we’re trying to get her to put that weight back on. Today she is having lots of back pain. She spends most of her time sitting on the couch or lying on her bed. She is not able to walk far and isn’t up to leaving the house for anything non essential. She hasn’t been keen for visitors and is still feeling very unhappy about being sick. She wants to know why this is happening to her and just wants to get back to having a normal life. I asked her what she misses the most. It is school, dancing and her friends and just being normal.

She had her third lot of chemo on Monday 21^st of December along with a general anaesthetic  for another bone marrow aspirate. We got the results back on Thursday and they are looking good. In healthy adults, bone marrow contains less than 5% of blast cells. When Kelcey first went into hospital, tests showed her levels of blast cells were at 30% in her bone marrow. The chemo has reduced that to under 5% at this stage. You are probably thinking ‘great’, all fixed. If only it were that easy. She has to have two more lots of chemo (next one on Tuesday 29^th of December) and they hope the % will get lower still. That will be the end of the remission induction phase of her treatment.  She will then need more treatment to help destroy any left over disease in her body. This is important because it helps to prevent the disease from relapsing or spreading. This second phase of treatment is called consolidation therapy. We will find out more about what it involves soon. We are taking one step at a time.

In my first update (which is below) I spoke about how people can help us. This is difficult for us to do. I like to think of our family as fairly self sufficient and to admit we are in need of support is not easy. But we are under pressure and due to the long-term degree of change in our lives, we will need help to get through it in the best possible shape. Below are some ways that those of you who are able could help out. No pressure to do anything, especially if you have already!! We have lots of support, Kelvin and I know a lot of people which in tough times is reassuring and comforting.  There is a recession on AND you’re in the expensive busy holiday season so don’t do anything unless you’re totally able, please. Otherwise, I won’t sleep at night!!!!! Kelcey has incredibly received a lap top and the latest iPod technology so she is covered on the computer/music/gaming/dvd side of things. We have access to friends DVD’s and am borrowing lots of CD’s to download onto the iPod.

Meals: Cooking meals takes time and often the evenings are chaotic. Kelcey is really fussy but any meals for Kelvin and I would be super helpful. Meals that can be frozen are best. We eat anything!

Random stuff: There are different products we will be using lots of: hand sanitizer, cleaning products, natural moisturisers for Kelcey (she loves foot and hand massages).

Prayers: For those of you with direct lines to JC, we would appreciate any prayers. Specifically, if people could pray for the treatment to work and for Kelcey to be brave about taking meds and looking forward to positive things happening in the future.

Letters and emails: Kelcey loves receiving emails and letters. 

 Petrol vouchers: As we will be going back and forth to the hospital a lot in the future, petrol vouchers are worth their weight in gold.

Stationary vouchers: Kelcey got a digital camera from family for Christmas. She did an enrichment digital photography programme at school in Term 3 and loved it. I am hoping to ‘encourage’ her into the visual arts while she is at home during the coming year. Vouchers for somewhere like Warehouse Stationary would be used to get supplies to print off photo’s and maybe do some scrapbooking.

Entertainment for Maclain!! I should have put this TOP of the list. It’s the holidays and we have a six year old who starts each day with ‘What are we doing today?’ Obviously all our holiday plans are not happening. Keeping him home every day is not ideal. It would be awesome if anyone who already has a connection with our son would be able to take him out for a few hours. You don’t need to do anything flash or expensive with him. He just loves playing with other kids, playgrounds, swimming etc.

Charities: For those of you here and overseas, if you have the opportunity to donate to any Child Cancer organisation, do it. The local Child Cancer Society have been really supportive. They offer a fantastic service to the whole family. In NZ around 40 children are diagnosed with Leukaemia each year. That’s 40 families who are going through what we are.

Kelvin and I are hanging in there. It’s going to be a hard slog. I’m tired just thinking about it but the smiles from our daughter  we get (albeit infrequent) are motivating and raise our spirits. She got Tyra Banks autograph and was thrilled (I almost wet myself! TYRA!!!). She is blown away by the generosity of people. We are too. Kelvin’s brother Lance wants to have a ‘Shave-off’ event early next year. I am not sure of the details but will let you know more in the future.

Happy New Year to you all. Here’s hoping that 2010 will help us get closer to our wish. No prizes for guessing what it is!

Update on Kelcey Roberts #3 (5 January 2010)

Hi everyone, happy new year. Shortish update this time and it’s good you received it ,as Telecom have identified me as a possible spammer and as a result quite a few of you haven’t received the previous two updates.... I’ve had to break the email group into two and have applied to xtra/yahoo to plead for non-spammer status... FRUSTRATING!!!. Anyway, Kelcey is still at home. We were at the hospital for our clinic visit all day today. Today clinic consisted of a blood test, then a meeting with the oncologist. That was followed with a general anaesthetic for a lumbar puncture, bone marrow aspirate and chemo directly into the spinal column, no IV chemo today, which was good. Got there at 11am and left at 4.45pm so it was a long day. She was also on nil by mouth from 7.30am and no water from 11am till 4pm which is a right pain in the ass when you’re as skinny as Kelcey. She was STARVING all day, poor thing.

Clinic is an interesting place. There are lots of children and teenagers at various stages of cancer treatment. It’s an affirming place for Kelcey, she takes it all in and watches the other kids. She notices lots and comments on different kids for days after. We are getting to know lots of the families as now the holidays are over our regular clinic day will be Monday. Her weight got down to 24kg last week but has come back up to 25.3 thanks to Kelvin’s special meatballs and mashed potatoes. Unfortunately tonight she managed to vomit up her entire dinner but fingers crossed we manage to get some more weight on her this week.

Her hair is almost gone which is extremely upsetting for her.

On a positive note we are adopting two kittens on Thursday. Hmmmm,  yes we are doing this for the emotional gains for Kelcey, certainly not for the extra duties involved in kitten rearing. She is very, very excited and as it will probably coincide with the total loss of her hair -I think the kittens will be worth their weight in kitty litter. The next update will be an important one as we will find out what direction her treatment will be taking. She will receive a ‘risk’ rating which scares the cr*p out of Kelvin and I – low, medium or high risk. Obviously the survival rates that are attached to this and the intensity of the treatment will have a huge effect in more ways than we can imagine.  Big breath..... We want to thank everyone who is supporting us. We are so grateful. We will update you when we have more news.

Update on Kelcey Roberts #4 (19 January 2010)

We are still waiting on one result but I thought I would let you all know that everything is going OK and Kelcey is definitely a lot happier. She is slowly putting weight back on (up to 26 kg now – she was originally 29kg). At the moment she is neutropenic. This means her white blood cell count is really low, she’s not sick as a result but it does mean that she has very little immunity. We have therefore put up the ‘No visitors’ sign on the door. It is a precaution for Kelcey because if she got sick the potential for her to get really sick, really quickly is huge. We don’t want to take chances so it’s easier to say no visitors, that way we’re not having to ‘screen’ people. Neutropenia is pretty much a given at this stage in her treatment. Yesterday we were at the hospital all day and her red blood cell count was too low so she had her first blood transfusion as well as another general anaesthetic, lumbar puncture and intrathecal  chemo (into the spinal column). For the next three days the District Nurse will visit us at home and she will have daily subcutaneous chemo (injection in her thigh). She is also taking oral medication. So as you can see, it’s a veritable cocktail of drugs administered in a variety of ways: oral; intravenous (vein); intrathecal (spine); intramuscular (muscle in her leg); subcutaneous (injection in leg). This will continue for months. Her hair has completely gone, she has a wig but isn’t wearing it much. She has lots of cool hats. The kittens we got are AWESOME!!!!!!!!!!!!!! They were a great success and I’m so glad we got them. Again we want to say a big thank you to all the great people who have been supporting us. Kelcey and Maclain want to say a special thanks to their ‘special friend’..... (you know who you are!) and thanks to Jeremy who gave blood on Kelcey’s behalf. Which brings me to my final request: please give BLOOD if you are able. Oncology kids use lots of blood products so dust off those veins and donate!! (Auckland’s call Ph 5235733 to check for location and eligibility). We will send out another update next week.

A PERSONAL MESSAGE FROM KELCEY TO ALL THE CONTESTANTS (AND SPONSORS)-22JANUARY.