A Few Rough Days

Thursday night Kay unfortunately managed to pull out her feeding tube, resulting in another call to the HomeHelp. So it was very late before Marion got to bed - I was already knocked out from the previous few days. Marion decided to sleep on a camp bed in Kay's room since Kay was very restless from the day and claimed that she couldn't sleep. The result was that Marion had a bad night, made worse by the feed pump which kept throwing off alarms. Friday morning Marion looked like she had been run over by a tractor.

However, life goes on. I went to work and Marion plodded on through the day. My intention was to come home from work early, but you know how it is, there's always one more thing that needs to be done... So I got home around the normal time.

Around 6pm Kay started complaining of pain in her tummy. The chemo that she gets causes constipation, so she'd already been getting a laxative. But we decided to give her a double dose on Friday evening to help ease her system. Unfortunately it didn't seem to help. Kay was in pain all evening and into the night. We tried everything we could think of, paracetamol, hot water bottle, frequent trips to the loo. We moved her into our bedroom so that we could keep an eye on her, but this had the effect that neither of us got any sleep.

Around 1.30am I wanted confirmation that it really was constipation so I phoned the hospital. Nearly an hour later the doctor phoned me back and we went through the symptoms. The doctor concluded that is was constipation and that we should tough it out (haha, poor pun), but that if we felt it was getting worse we'd have to bring her in for an enema. Fortunately shortly after her system started to calm down and in the end we managed a few hours sleep. But today, we're again completely wiped out.

Marion went off to sort some things out this morning. I kept an eye on Kay while doing some admin. However Kay again started complaining of tummy pain, this time up near her ribs. I checked her a couple of times and felt that she was a little too warm. So I got the thermometer and took her temperature - it's one of those underarm things that peeps when it has reach a stable temperature. However the temperature just kept on rising. When it got to 38.2, as per instructions, I called the emergency room at the Catherina Hospital. They told us to bring Kay straight in and they'd run some blood tests. So Marion is now with Kay at the hospital and...

...Marion just called while I was writing this. Kay has an unidentified infection that means she will be admitted and given antibiotics immediately. The course will last for three days. All plans for treatment are now on hold, we'll hear more tomorrow. The good news is that her red cell count is good and her white cell count is down further, 0.5, which is also good. However some other component of her blood is way too low and indicates the presence of an infection. For now Marion & I have to work out how to rearrange our weekend accordingly. Who stays at the hospital and what do we need, etc, etc.

Fortunately Mum & my Aunt arrive tomorrow for a week so we will have some backup at home during the next days.

No need to invent a fire-and-brimstone-hell, this is worse.

Kay's Report from Thursday

ik heb gisteren een bloedtransfuctie gekrgen en ik heb ook gisteren bloedplaatjes gekregen ik moest gisteren om 10 uur naar het ziekenhuis in einhoven daar kreeg ik me bloedtransfuctie en dan kreeg ik ook nog blodplaatjes dus we kwamen daar giseren is het bloed er nog niet dus ik moet nog  2 uur wachten de bloedplaatjes zijn er al wel die kunnen er al aan even later hangen de bloedplaatjes er aan en het is al 12 uur dus het bloed is er dus ze komen met de naald om de portokat aan te prikken het is gedaan ik krijg twee bloedzakken om meer energie te krijgen en elke bloedzak doet er 2 uur en een halve.

BTW

Remind me that I have to become a blood donor. I hate needles, but that's no excuse.

Thank you, whoever donated the blood that Kay's now getting.

Trip back in time

Guess where we are? Back where this all started. To be specific, we're back in the very same room where Kay was initially treated for leukemia the first time. She's getting a blood transfusion at the Catherina Hospital in Eindhoven, something that takes most of the day. So we're sat here, chatting to staff who remember us from the first time. Another strange experience.

Anyway, by way of tripping back in time, here are a few photos of her last stay in the Catherina:

11th June 2002, her first full day in this room.

4th July 2002, day after Natasha's birth.

The cheerful Dexa Kid.

End of induction therapy.

Message from Kay

ik voel me al veel beter ik heb maandag me tweede chemo-kuur gekregen een rugeprik en via mijn portokat ik ben nu thuis ik heb ook een sonde gekregen voor mijn medecijnen en ik krijg s'nachts krijg ik sonde voeding binnen dan heb ik wat eten binnen ik heb twee keer mijn sonde uitgespuugd ze hebben hem er ook terug in moeten zetten wat niet fijn is ik ga als ik me weer beter voel en ik kan weer naar school dan ga ik een spreekbeurt over leukemie doen.

ik voel me aan de ene kant goed maar aan de andere kant voel me ook niet goed de goeie kant is dat het goed gaat met de medecijnen en dat ik weer thuis ben en de niet zo goeie kant is omdat ik bang ben dat er iets mis thuis gaat maar verder voel ik me goed ik eet goed toen ik in het ziekenhuis lag was ik onzettend zwakjes ik lag alleen maar in bed ik kon bijna niks daarna ging het wat beter maar ook niet jeeeee super goed en zondag had ik goed gegeten en s'avonds ga ik naar bed en ik gooi me kleren uit ik ga op me bed zitten en ik ga weer staan en ik begin de spuugen raar raar raar wat gebeurt er ik spuug de sonde uit ik roept heel hard naar beneden naar papa en mama daddy komt naar boven en ziet wat er is gebeurt hij haalt de sonde weg daarna ga ik bij papa en mama in bed liggen een uurtje later komt de thuiszorg zet hem er weer ik ga weer lekker slapen rond 11 uur s'avonds heb ik ontzettende maagpijn mama belt de thiuszorg en vraagt of de sonde goed zit hij zat goed yes dat is fijn maar dan wat dan gaan papa en mama ook naar bed dan weet papa het en zegt dat ik van het spuugen een spier het verrekt dus dat was het maar mama dacht dat er ook een beetje lucht in mijn maag had zitten en dat was het ook dus er was een spier verrekt en er zat lucht in mijn maag.

dankje wel voor alle berichten bloemen kaarten cadootjes en nog veel mee.

xxxxxxxxxxxx kay

Chemo #2

Today Kay had her second batch of chemo, vincristine through her portal and methatrexate into her spine. This is relatively light chemo. She did very well indeed and although extremely tired she has been at home since the evening, sitting cuddled up with Mama or Daddy.

Her blood cell counts were down, including her haemoglobin for the first time. She looks pale and has some lingering bruising from a low platelet count. The specialist reckons that she will need a blood transfusion later this week to boost her haemoglobin. All of this is seen as completely normal, at least in this weird world that we now inhabit.

She has promised to write something for this blog in the next days, but we'll have to see if she has the energy.

A brief quiet moment

The first night/day was like bringing a new baby home from hospital. We were run off our feet. Meds, nighttime feed via tube, trips to the bathroom, flushing the NG tube once the feed was finished at 6am, etc, etc. Saturday morning Kay had some tomato soup. Then enjoyed a bath with Nattie & Daddy. A few minutes after getting out of the bath she was sick. Daddy had a fit, since what came up was bright red and was followed by the NG tube. Fortunately Mama could recognized tomato soup when she saw it and was swift to pull out the NG tube entirely. But this meant that we had to call the HomeHelp service to get someone to come and put the tube back in. Whoopee.

Today Kay was the first awake and up. She came into our bedroom at around 7am so show how much energy she had this morning. What a difference from a few days ago! She's had a visitor this afternoon and is now having a well deserved snooze.

Tomorrow begins round two of the chemo. This will be a lighter course than last week so hopefully she won't be quite as knocked out.

Below are a few more photos from last week:

Chatting on the Laptoppie

Snuggled with Mickey & Pooh

Completely zonked from Chemo

At Home

So, we're back at home with a car load of paraphernalia (had to spell check that!). Kay is now snuggled down in bed connected to the feed pump. She will get 600ml of food everynight until her appetite has recovered. She is tired but happy to be home. As are Marion & I. It's good to see Lauren & Natash as well. So that's it for today. More tomorrow, when I'll post some photos from the last days.

At home enjoying all the cards & presents

Going Home

Blood cell counts good and stable. Kay has more energy and looks better. So we can go home until Monday when the next chemo starts. We have a car load of medicine and liquid food to take with us. Got to run...

No improvement in weakness, home coming delayed

Kay is still not eating very much and remains very weak. She's been moving around a little today and has been outside for a breath of fresh air. However, whilst in terms of cell counts and treatment there's no reason for Kay to stay in hospital, the doctors are concerned to stabilize her weight loss and nutrition before letting her go home. We hope that this will be tomorrow evening, but we'll have to see day-by-day.

In herself Kay is doing very well. She had a quiet word with one of the nurses today, who then took Marion & I on one side and told us that Kay had asked her to interceed on her behalf: we were bothering Kay too much with our concerns about her lack of appetite and the need to eat. So we have learned our lesson and backed off on the subject. I said that Kay was dealing with all this better than Marion or I!

Kay had a bunch of questions about the treatment, schooling, hair loss, etc, that she wanted to put to some of the other patients of her age. The hospital has a team that facilitate this using video. Kay has written her questions down with the help of one of the team members and I gather that the video team will then use these questions to interview some other girls on the ward. They will then make a DVD of the interviews and give it to Kay. This keeps a layer of privacy and discretion (and isolation), but also helps these kids out. Cool, or what? I tell you, this is a brilliant place.

Cosmic Jetlag

Kay is very weak and extremely tired. She can barely keep her eyes open and isn't bothering to try. She doesn't want to talk, move or anything. Three days of chemo and no food have taken their toll. We were told that this would be a tough week, so no surprises there.

Strangely enough she looks pretty good, reasonable colour in her cheeks, still no sign of hair loss. I still wonder whether the diagnosis was right, but of course it is. But I suppose that there's no doubt that the cancer victim look will come, her weakness is but the prelude.

Good news is that she has her nasogastric tube and that she will probably be able to go home tomorrow evening or Friday. As long as she remains on course and infection free she should be able to complete the rest of the treatment as an outpatient.

Cell count drop: early release from hospital?

Kay's white (cancer) cell count has dropped from 53 to 7. The doctors are pretty impressed. However, Kay is struggling to take her meds. Last night it took Marion three attempts before she managed to get Kay to keep her meds down. We think that this is largely psychosomatic, Kay has the idea that the meds will make her sick, so they do. You can practically see it happening before your eyes.

Kay is also eating very badly. She has lost a kilo in weight in the last few days. So it's likely that she will get a nasogastric tube today for both meds and supplementary feeding. Tomorrow Marion & I will get instructions on the NG tube and how to use it. If all goes well, Kay could be home on Friday and the rest of the treatment performed on an out-patient basis.

The Tired Girl and the Cliniclowns

More chemo today: Asparaginase. I think this must be a local speciality made from asparagus. I never could understand why Dutch people refer to asparagus as "white gold", but it must be for it's chemo-healing properties. It certainly doesn't taste that special.

As a result of all the chemo Kay has been very tired. She has snoozed a lot and had a huge dozey cuddle with Daddy this morning. What could be better on a Tuesday morning?

She was also given a "Sootie and Sweep" puppet show by Granny & Grandpa via Skype. Then the Cliniclowns turned up with a colony of breeding mice that they were trying to sterilize using the hand cleaning fluid. So after all that it's hardly surprising that Kay didn't feel like doing much. Currently she's dozing again, waiting for Mama to turn up with some of her favourite food.

Thanks for all the support

The support that we're getting from family and friends is... er... well, wonderful to say the very least. From the comments that people have offered here to emails, SMS's, cards and phone calls, it just what we need. Know that they are a form of sustenance to us during this lean period. Thanks.

Day Five

More chemo today. But Kay seems to be doing well, relatively. She's suffering some nausea and she's pretty tired (snoozing right now). But she's in fair spirits. She has green wee! Yukkkkk!

Chemo Begins (Day Four)

Kay has started her chemotherapy today with three different treatments. I'll not go into the details except to say that one was bright blue and will turn her urine green, an idea which quite seems to fascinate Kay & Natasha. She has been brave, only kicking up a fuss when Daddy wanted to make a photo. She looks a little pale right now, but that's hardly surprising. She's now back on MSN, chatting to her friends and reading emails.

Amazing.

Chemo begins while Kay chats with Lauren

Insurance policy - hopefully never to be used

The week before Kay was diagnosed with leukemia the first time, by pure coincidence I'd seen a program on BBC 2 about treating children with high risk leukemia. This program concluded that stem cell technology was a potential treatment for the future. Since Natasha was due to be born during Kay's initial treatment we arranged for her to be born in Njimegen and her stem cells to be frozen in case Kay should ever need them in the future. Since at that time Kay had a relatively low risk form of leukemia I think that this was done more to humour worried parents than as a serious provision for the future.

Boy, I'm now glad that we took this step. Although we won't know for while if Kay will require a bone marrow transplant and we don't know yet if Natasha's stem cells are compatible - there's a 1 in 4 chance versus a 1 in 25000 chance otherwise - the idea that we at least potentially have this option is somewhat reassuring. But still, I hope we don't have the ask the question. If Kay responds well to induction therapy, we should avoid the need for a transplant.

Kay's Daddy.

The Conversation with the Doctor (Day Three)

Kay's leukemia is back, is the conclusion of the doctors. This means that she will be treated according to a relapse protocol, if that's the right English description. As we'd already gathered, this protocol is much more aggressive than a primary treatment. The induction phase will last four weeks. In the fifth week Kay's bone marrow will be examined for cancer cells. If there has been a sufficiently positive response to the chemotherapy then the remainder of the of the protocol will be based entirely on chemo. If there has not been a sufficently positive response, then she will almost certainly end up needing a bone marrow transplant.

The good news is that there are no cancer cells in her spinal fluid, which means that treatment is somewhat easier. Also, the fact that she had been cancer free for so long and that she is fit and otherwise healthy are all seen as being in her favour. The protocol does not need to be compromised because of any existing conditions or hangover from previous treatments.

Chemo starts tomorrow. The first week will be especially intense. So we have to complete our mental switch from living a normal life with normal horizons to living purely day-by-day, taking each day as it comes and treasuring each moment.

Kay's Daddy.

Sleeping Beauty, Mickey & Froe

Day of diagnostics

We heard yesterday that Kay’s leukemia is the same cell type as before and most likely it’s the same DNA problem as before. Last time she had extra chromosomes (55 instead of 48) in the cancer cells. This is a pretty treatable form of leukemia, but the fact that it’s a recurrence after 7 years is something of a puzzle. The doctors are debating whether to treat it as a primary or relapsed leukemia. In either case the treatment will be longer and much more aggressive than before, with a higher risk of infection. It’s possible that she will be in hospital for 6-8 weeks initially, but we have yet to hear about the treatment plan.

Fortunately we seem to be quite early with the diagnosis. There’s no sign of leukemia cells in Kay’s lungs and the rest of her blood chemistry is ok at the moment, meaning that the cancer cells haven’t yet had the chance to depress the production of red cells and platelets. I asked the doctor whether a check in the summer would have spotted the cancer, but he told me that it has developed very recently, within the last weeks.

This afternoon Kay has had an operation to remove bone marrow and spinal fluid and also to install a portal in her chest for chemotherapy. Daddy held her hand as she was put to sleep and Mama was there as she woke up. The operation was successful and Kay is now lying in bed feeling a little tired and sore from all the needles that have been poked into her. Tomorrow we will get to hear the plans for her treatment and what we can expect in the coming weeks.

Kay has a laptop from the hospital and skype & messenger – she’s been video conferencing with Aunty Alison in Aus and other friends and family this morning. If you want to email Kay you can reach her at her firstname surname at hotmail.com.

Kay's Daddy

Kay & Mama waiting for her operation today

Kay on Day One

Here we go again...

On the 10th of June 2002, Kay was diagnosed with leukemia (ALL) at the age of 22 months. After 109 weeks of treatment and another three years of monitoring she was declared officially cured on 2007. Since the completion of her treatment she has been perfectly fit and healthy.

A few weeks ago she started to complain of headaches. We had her eyes tested, no problems found. However the headaches continued. This week she started to lose her appetite. So on Wednesday 16th October Marion took her to the doctor, who ran some blood tests. The results of the blood tests indicated leukemia. We were immediately sent to the Academic Hospital of Nijmegen, the local specialist cancer treatment centre. Kay was admitted on the spot and treatment and testing began immediately.

Needless to say that we are all extremely shocked by this sudden turn of events. Kay has taken it well. In fact she's dealing with it better than Marion or I.

The purpose of this blog is to keep everyone up to date with Kay's progress and related news. We will try to update the blog as often as possible and we encourage our friends to add their comments. Let's all keep our fingers crossed for Kay and the future.

Kay's Daddy.