We finally made it to the week when Chester would go into the treatment hospital for his final round of High Dose Methotrexate. We were looking forward to getting it over and done with. This would complete the first block called Interim Maintenance 1 (IM1).
Although Chester had coped well with the last 3 doses, it still made him feel really rubbish for a few days after each round. It also wiped his blood counts so that just makes him feel generally unwell. But seeing as it is the first part of frontline treatment and is very intense and high dosages, he didn’t have to have any blood transfusions in this part thankfully!
So the community nurse came out as they usually do on the Friday to check his bloods, and we waited for the results. They came back, and he was just slightly under what he needed to be to go ahead. His platelets were at 70 but needed to be at 75 but his neutrophils were ok as they were at 1.4.
As he was so close to being on the minimum amount needed on the protocol to go ahead with the treatment on Monday, his treatment centre booked Chester in to be admitted and go ahead anyway, as they were certain his bloods would rise by enough over the weekend and they were keen to get his treatment done on time as soon as his bloods were high enough.
So they asked us to go to our local hospital on the Sunday to get his bloods done again. Then they said if they are all good then give us a ring at around 9.30 am on the morning you are due in, even though we were supposed to get there at 9 am so that we could potentially get Chester on the fluids straight away and spend one less day in the hospital! So then they said ring us at 8 am and someone will be around to answer. So we thought OK, what could possibly go wrong this time?
So we took Chester to the local hospital and got the bloods done. The results were that his platelets had gone right up to 200 which was great. But annoyingly his neutrophils dropped to 0.7 for some strange reason. However, they were borderline on the minimum requirement, and when he had these exact results before on round 2, they had still gone ahead as they didn’t want to delay. Blood counts can increase literally the next day!
So we phoned first thing Monday morning but couldn’t get through until 9 am (when we were supposed to be there for our appointment) to then be told that Chester’s bloods are just on the borderline and that we will probably be told to come in and go ahead, but just needed to double check with our consultant first. And also mentioned they were really busy and may not have a bed for his treatment anyway.
So they promised to call straight back with the plan as they know it takes us about an hour to get there, and we also wanted to know what was going on. But we heard nothing for half an hour. So we phoned to chase and the nurse who was sorting it had gone into a meeting! Eventually, we got a call saying we were not going ahead as his bloods were borderline and wanted to wait a couple of days to see if they increased again. This was fair enough but last time they went ahead on the same numbers, but this time they didn’t as they “wanted to wait”. It just seemed strange as they had no beds. But they said we would be told what day we could go in, possibly the next day or the Wednesday. As Chester wasn’t having a lumbar puncture this time he could go in any day.
We were then left without any clue what was happening and there was no plan of action. Normally they would arrange for the community nurse to come out to us Monday morning or Wednesday morning to do Chester’s bloods so we can go in for his treatment later on that day. After a lot of messing around and chasing we were just getting the same result, they actually had no beds and they were too busy. So they delayed checking Chester’s bloods until Wednesday afternoon and said we may be able to go in Friday. But I would still have to call on Friday morning to check they had a bed! They also had a queue of other children who also needed to have their chemo.
In the end, because we had already contacted PALS regarding previous problems (even though we were yet to get a response apart from a case number and it had been passed on to relevant people) we sent them another email asking about the lack of beds and what was going on. We asked about the ward not having any beds which is stopping our son from being able to have his very important chemo treatment, as once his bloods have reached the correct levels they need to stop the cancer from regrowing and to give the chemo to treat it. It’s also unfair on Chester as we get him prepared for when he needs to go into hospital, and he gets worried and then tell him we are no longer going in and not sure when we are. It has been messing with his head. But we have to tell him as we don’t want to lie to him.
We actually had a response from the matron of our oncology ward (but nothing from PALS themselves) and she said they would never stop a child treatment because of not having enough beds, so she got involved and went down to the ward to find out what was going on.
The end result was we still did not end up getting a bed and going into the ward until Thursday afternoon. Even though Chester’s bloods were really high and good to go on the Wednesday.
They said it was because Chester’s bloods were only borderline and they wanted to find out which direction they were heading even though they could have still come out and checked his bloods on the Monday, Tuesday and Wednesday so we could start his treatment.
Either way, our consultant also told Christian that yes they do not have enough beds and when we went into the ward for Chester’s treatment the senior nurse in charge of the ward actually had a chat with Christian and also told him they didn’t have enough beds. And because of us contacting the matron and pals they had a shuffle around all week, got more nurses into work, and actually opened up another two rooms as they had only been using the 10 beds out of 12 beds.
So Chester only got in for his treatment because of how persistent we were! Otherwise, it would have been the next week. When staying there were no beds free until Sunday which was the day we went home.
Chester did really well again with his treatment. He was a bit sleepy and went off food again, but was still quite happy and smiling. He was glad it was the last round of this horrible stuff, as he kept asking why it was making him worse and not better.
During our in-patient stay we spoke with the matron and other senior staff had been made aware of our problems (which never got passed on by the previous matron) so surely nothing could have gone wrong during this visit. Well although it was not as bad as last time there were still a few things that had gone wrong that we have also now made the matron aware of and these were:
- Three times they took Chester’s weight on the first day we were in, by three different nurses. This was because the other two nurses did not write down Chester’s weight.
- Gave a wee sample and when we asked if Chester’s PH level was high enough to start the methotrexate the lead nurse said the nurse that was supposed to check didn’t do the PH check and had binned Chester’s sample.
- The dirty utility room – we know the ward was busy but a lot of times there was no room to put Chester’s wee pot and parents were stacking the pots on top of each other, which is pretty disgusting and might be one of the reasons the nurse did not check Chesters PH because they wanted to dispose of the waste quickly or got confused on which ones had been done. As parents, it’s not great having to avoid other balanced children’s bodily fluids which have god knows what in.
- They wrote down the incorrect amount of imatinib Chester was supposed to have each day, but luckily Christian checked and said he is having 2 today, not 3 and they had on the system it was supposed to be three so they just assumed! Again, we then have to keep checking to make sure it is correct and shouldn’t have to be worrying about it.
- Chester was sick and felt really ill. The Drs never bothered prescribing Chester a different type of anti-sickness and he was left feeling ill for 3 hours of us chasing to get him some. Tracy did keep chasing for us to her credit, but the doctors just kept not doing it.
- After pressing the nurse call button about an air bubble because the bicarbonate was running low and the fluids were, it took the nurse around an hour to sort this out and Christian found out she had gone into a meeting and that’s why she was taking so long leaving Christian and Chester listening to a beeping machine for this long. Christian had to chase multiple times before he got an answer.
- When I stayed the second half the temperature had dropped. Chester had lost his Marvel heroes jacket and didn’t have anything else. After a hunt, we saw it in the lost property box as we saw it through the locked door in a box as he had left it in the playroom. It took three nurses and asking about 8 times until one bothered to get the keys and get it the following day, even after telling them Chester needed it as he was feeling cold. One nurse promised she would get it right now and never came back.
- On the morning when Chester was due his second folinic acid dose, I asked the nurse why are you not taking the bloods as don’t you need the mtx levels. And she replied and said it was because he had cleared them, but this was after checking with someone else. So she had been told not to take them but was not sure why, which then left me worrying. The doctor also questioned me why they hadn’t the bloods been done as she wanted bloods to check sodium levels etc. as they were elevated. So they had to then take the bloods that were supposed to have been taken in the morning. But another nurse did then confirm that he had already cleared his levels.
- Finally, after being allowed to leave they gave me the next appointment for the lumber puncture and to start the next block (DI) and they even managed to get the date wrong for this. Our CNS had to phone us and tell us it was wrong and give us the correct date.
- After all the fluids Chester was really puffy again this time. They are supposed to check his weight and check with the doctor, but no one bothered.
Chester did absolutely amazing as always during our stay in the hospital and actually cleared the high methotrexate levels faster than he previously had, which was great news. Although he is going through this awful time of being on all the chemo he still managed to keep a smile and play lots of games on the Xbox that’s in the room, with his dad and also myself when I swapped halfway through the week.
We also had a couple of charities pop into the ward who also played a couple of board games with Chester and this is when he first discovered the “frustration game” that he absolutely loved.
We also try and make Chester laugh when we stay and this next thing had us all in stitches all day. One of the guys who takes the dinner orders is lovely, but he doesn’t always get you the right thing, and it’s sometimes a suprise what Chester is going to get for dinner. We ordered him the Roast chicken dinner with potato and veg, and instead he just got chicken on a plate. It was so funny and made Chester giggle all day.
To help make his stay a bit nicer, when me and Christian swapped halfway through, Christian bought along Willow and Aurora to see him. So he was really happy with that.
Chester even learned how to make a paper aeroplane and throw it across the room. This got Chester’s spirits up as Chester wanted to keep throwing the paper aeroplanes and Christian had to keep retrieving them. It does not matter what Chester is on his spirit never seems to get broken, and he still manages to smile and keep doing stuff. He also suffered from quite a few ulcers for a few days after.
Once we were finally home the following week Chester got a temperature so we had to take him to our local hospital at 4 am so he could get antibiotics and be monitored by the doctors for the next 48 hours.
Although he had a temperature and he wasn’t talking too much he still managed to play some card games with his nan and pops the next day. The following day myself and Christian had to go and get Aurora’s birth certificate done so we left him for about an hour with his nanny and watched some videos on his tablet. Chester also had our community nurse come in and see him to do his dressing, and he asked her if she could get him some Batman stickers. (On the next visit she remembered and got him some Batman stickers which was very nice. He was so happy!)
Chester also had to go for an ultrasound as he was getting bad tummy pains along with his fever. They said they wanted to check for appendicitis so luckily he also got all his other organs checked at the same time. It turned out he was just very constipated!
Finally, it had been 48 hours and time to come home from our local hospital, but then there was a bit of confusion because both oncology doctors were allowed time off together and one of the nurses did Chester cultures again, so the doctors seemed to think that we had to stay in for longer until the next day. Luckily I explained to the doctors that it was a second set of cultures they had taken in the night as he spiked a temperature and the previous doctor said he could go home off the first set, providing he does not spike a temperature within 24 hours.
The following day when we were all together Christian went around and knocked on a couple of our neighbour’s doors and asked if we could come around later in the evening to do trick or treating as Chester was in the hospital and was very upset as he thought he had missed out on Halloween. So we took Chester out later that evening and some of the neighbours even kindly went to the effort to decorate their houses with Halloween items, Chester and Willow had an amazing time and it was very kind of our neighbours to do this.
We are now waiting to go onto the next block of Chester’s treatment and we have spoken with the consultant at the treatment centre and have found out that his next blocks do not contain any inpatient stay-ins thank god! We only need to do daytime outpatient visits, the only night stays we would have to do going forward if everything goes well are the ones at our local hospital if Chester spikes a temperature of over 38.
So this week we have just been chilling together and playing lots of games, as we have had a week and a half break to let Chester’s body recover, ready for the next block called Delayed Intensification! But Chester has been doing well and is full of energy. He gets a bit achy and is struggling to walk at the moment, but he is doing well in himself.