Thursday, January 5, 2017

Diagnosis - part 1 (Wednesday)

On Wednesday morning you slept in til 8.30am - the boys and I went upstairs to open the blinds to let the sunlight in and only then did you start to stir. When you woke you looked terribly pale - there was no colour in your cheeks and you looked tired. Your temperature was up a bit, and you told me you didn't feel well. We got you dressed and I rung the doctors, making an appointment for you for 3pm that afternoon.

We dropped Alex at daycare as normal then headed home for Jack's nap. You watched tv on the tablet on my bed while I got him to sleep, then sat on the couch while I went on the exercise bike. After Jack's nap I took you both to Porirua in the A3 as we were getting the clutch looked at - it had been wearing for the past 3+ years, and we now believed it was nearly gone so were getting an opinion on what we needed to do to fix it and how long it might last. While the mechanic looked at the car I took you and Jack to the shops in the pushchair, going to Kmart for a Christmas tshirt for you and Pak'n Save for some bits. The clutch wasn't good news, as it needed a full replacement, which we couldn't afford to do until I returned to work in Feb following the end of my maternity leave. The mechanic said the clutch could have a week or 3 months remaining - hard to say. As you we leaving somehow you looking pale came up, and even the mechanic agreed. We did normal things like washing and playing with your toys for the rest of the day, but you weren't hungry and had a slight temperature all day. You were tired.

Just before the doctors we called in to the supermarket - one of your favourite things is going to the shops with me. You hadn't eaten much all day, but asked for a treat at the shop - I let you choose a chocolate bar - you choose a Whittakers Milk Sante Bar and devoured it quickly.

We got to the doctor just on 3pm and you played in the toy area while Jack had his milk. We didn't wait too long before Dr Mathias called us in. As usual he asked what had brought us in today and I explained that you said you weren't feeling well and had a sore ear, your temperature had been up during the day and you had had a high temperature over night. I told him you seemed tired but had been playing and doing all the things you would normally do. I also said you looked very pale.

He checked you thoroughly and couldn't find anything physically wrong, but agreed that you looked very pale. Having seen you on Monday he was able to see a marked difference in your palour compared with only a couple of days earlier.

He explained that he couldn't see anything requiring antibiotics, but wanted to cover all the bases so was recommending a blood test. He suggested getting it done that afternoon if we were able.

We left the doctors and drove to Johnsonville for the blood test. As we drove I called daddy on the car parrot to let him know what the doctor said and told him we were going for a blood test.

We had a short wait at the testing rooms. You were quiet, sitting on my knee. Jack was grumpy (he doesn't often get grumpy) as he was stuck in his car seat in the pushchair - knowing you wouldn't like the blood test I needed to have him confined to a safe place so he couldn't crawl away! They eventually called us into the testing room about 4pm and we sat in the big chair together. I confirmed your details, then held you as the two ladies secured your arm and took the blood. With a special plaster with the number 3 on it on the test site and a certificate we went back to the car.

We drove to daycare to collect Alex, getting there about 4.30pm. We saw some of your teachers in the playground, and I mentioned how pale you were and that I didn't know if you would be in on Thursday. Then we headed home. Although not important, I remember the weather being grey and slightly overcast, but in the mid-teens - so not cold.

We got home and had dinner before heading into the bed time routine of bath, story and bed.

Daddy and I were just finished watching an episode of The Crown on Netflix when my phone started ringing. It was about 8.45. It was unusual for someone to be calling me at night, and more so for it to be an unknown number.

I answered the call, and the man on the other end explained he was calling from the lab as he hadn't been able to get hold of your doctor. Your blood test had some unusual results and was showing that you were very anemic. Would we be able to bring you into Wellington Hospital straight away. To bring a bag and be prepared to stay overnight. I checked I could bring Jack, then daddy and I quickly prepared a bag with some clothes and snacks for you and Jack. I then woke you and carried you down to the car while daddy put Jack in his car seat. You weren't happy about being woken up and cried most of the way to the motorway, cheering up on the gorge when you started talking about the lights and then going through the tunnel. Jack fell asleep again.

We got to the hospital and parked in the underground park before heading up to the emergency department. They took some details, then we waited in the waiting room for about 45mins while one of the paediatric doctors came over. Eventually we were called through and taken to a small room. Jack was in the Moby wrap trying to sleep and you insisted on only sitting on me or being carried.

The doctor put on a mask before entering the room, then explained that she was just protecting you as she had a cold. She said that your blood work showed low red and white blood counts and they were doing some further analysis to understand what that meant. You also had low immunity as a result. I asked her if that meant leukaemia and she replied that they were still working on the blood.

She then took us up to the children's ward and we were taken to an isolation room. Jack had fallen asleep by this time - it was about 11pm. You were tired and not happy when the nurse came in to do some obs (temp, blood pressure etc) and to put some numbing cream on your hands in preparation for putting a cannula in. Shortly after a guy came in with a portable X-ray machine to take a chest X-ray - which you hated and refused to sit properly for. Eventually we got the X-ray done and we were left in silence for a short time. Then nurse came back and put the cannula in, took another blood sample and started some antibiotics. Jack woke after a short sleep.

The nurses came back and set up a cot for Jack and a bed for me.

Just after midnight two doctors came in and said they had the results of your blood work. It showed you had leukaemia. My heart sunk as they told me, but it wasn't til I had to call daddy a short time later that I started to cry.

The doctors explained that we would go to Christchurch later in the day for 4-6weeks and the treatment would be ongoing for roughly 2 years. They explained that success rates are good, with these being over 90%. They said they were happy to answer any questions, and that more information would be provided about treatment and the diagnosis in Christchurch.

They left and I called daddy about 12.30am and told him. He called grandad who went home to look after Alex, then left for the hospital once grandad arrived.

Wednesday, January 4, 2017

Introduction

On Thursday 1 December 2016 you were diagnosed with leukaemia. This blog outlines your journey as you fight this illness.

On Monday morning (28 Nov 16) Alex was complaining of sore ears. As he's mentioned this a few times over the weekend I thought it best to get him checked at the doctor. As usual, I rung at 8am and was able to get an appointment for 8.45, so he could be seen before daycare.

We went to the doctor as normal and Dr Mathias checked Alex. As you had said your ears were sore in the car I asked him to check yours as well - you'd been on antibiotics for ear infections every other week since about June - yours had some fluid but were otherwise ok. We left and took Alex to daycare as normal. 

Driving home from daycare (just Johnsonville to Churton Park - about 7mins drive), you started falling asleep in the car. This was just after 9.30 in the morning. Jack had also fallen asleep, but you woke by the time we pulled into the driveway. Jack woke quickly once inside in his car seat and I was annoyed as you were being very whingy, so I bustled us back into the car and we went to the Johnsonville Mall. After parking and getting Jack in the Maclaren you refused to walk, insisting I carry you. I carried you while we found slip on shoes for Jack, but switched you into the pushchair and carried Jack around the supermarket. We headed home and I tried to get you to eat lunch (toast and fruit), but you weren't interested - not unusual for you. After a while I stopped trying to offer you more food and we had a quiet afternoon watching tv while Jack slept and played with your toys. 

We picked up Alex early so we could try to take some Christmas photos before dinner. You weren't keen to have your photo taken initially, but soon came round and I managed to get some cute photos of the three of you.

On Tuesday Alex was home from daycare as was normal for our schedule, and we had his second school visit scheduled - starting at 9am. As it was a nice day we decided to walk down as you were keen to go in your pushchair (you love walks) and Jack needed to sleep (I'd decided to use the Moby wrap for the nap during the visit) - Alex was grumpy to start with as he didn't want to walk! 

We got to school early and Alex was quickly off with kids he knew so we left him to it and went to read books in the library. After about 30 minutes the library started getting busy so we headed out to the playground where I pushed you on the swings for ages before you ran around the fort playing 'shops' selling me coffee and ice cream. We went into the common room and ate our morning tea before finishing reading more books in the library. Once Alex had finished (at 11am) we walked home and had another quiet afternoon.

Later that evening once you were all in bed (and I'd decided not to bother going for a run!) daddy and I were watching tv in our room when I heard you crying out. I hadn't long had Jack in bed, but with you in Alex's room I thought I'd get to you quickly so you didn't wake Alex. When I got to you you were soaked with sweat and had wet the bed - something you had done only a couple of times since leaving nappies behind in January. I picked up you and got you changed, took your temperature (39.4) and gave you some medicine. You lay in our bed while I quickly changed your sheets. 

As you obviously weren't well I told daddy you were staying in our bed tonight and you snuggled close to me before falling asleep.