When we started writing these blog posts, it was more about how Chester was getting on with his treatment, and it flowed easily. Now it has become very hard to know where to start, as we still write about how he is doing but also about what went wrong!
It has been another eventful couple of weeks! It feels like we are constantly moaning but it just doesn’t seem to get any better. We are told by multiple people, nurses, and other parents that all the parents moan about the way things are being done and how they are treated, but it still carries on.
We are very laid-back people. However, when it comes to the kids we will say something if we don’t think it is right. So while he is admitted to the hospital we pretty much have to chase up, moan, and question everything all day. This is because when we stay in the main treatment center, it does seem to be (to put it politely) a circus.
Chester had his third round of High Dose Methotrexate last week (HD MTX). He absolutely smashed it again and is coping, as usual, very well. He’s our little trooper! He cleared the levels out of his system very quickly and was home by Thursday evening.
So the community nurse tested his bloods on the Friday before we were due to go in and his blood counts were just at the minimum amount needed to go ahead with this round of treatment. As nice as it is to let his body recover, as he had been on a 2-week hold already we were keen to get this next bit done. After we had the results on the Friday, we had the phone call to confirm that Yes, we would be going in on the Monday to start round 3.
The whole idea of chemo is to kill off all the healthy and bad cells, which is why the blood counts drop. And they have to be at a certain level to continue otherwise the treatment would be too harsh on the body. But they also want to start the next phase of chemo as soon as the counts are at a certain level, to stop any cancer cells from rapidly growing again.
So it was important for Chester to start this next round of treatment and he was all booked in and they knew he was coming on Monday. But was it that easy? No, it was not!
It is not nice as parents to see Chester go through all of this. And it’s even worse when he is in hospital and hooked up to all these machines and just going downhill and feeling rubbish. We know the chemo is fixing him, but it’s also technically a poison, so it’s devastating. So each time he is due to go in, we mentally prepare ourselves as much as we can. So as he wasn’t due in until 3.30 pm on Monday, we had got ourselves prepared as we knew we were going in. I also spent the morning packing all of our hospital bags, food, etc for the week’s stay.
After we had bathed the girls, I noticed a voicemail on my phone from the treatment center. It said there wasn’t a bed available for Chester, and that the ward was full. She said that she would try and find a room for him but would let us know by 1 pm if they have managed to get one.
I then phoned back and asked how can there be no rooms if they knew he was going in. She said it was just busy and that other children were also waiting to be admitted for chemo. When I asked what happens if you can’t get us a room, she said we would have to wait until Wednesday or even another week. I said how concerned I was as he had already had a 2-week hold, and as I explained above his bloods were now high enough so his cells would be growing again. But she said, “It’s just one of those things”.
But she was pretty sure a room would pop up as they were “discharging/kicking out” people later on in the afternoon (bearing in mind it takes us an hour or so to get there). I then got the phone call saying that there was a room for Chester and we were good to go, so I started to load up the car.
We all of a sudden had a thought. As they said it was so busy and that a bed was all of a sudden free, we wondered if it was in the one shared room. All the rooms in the ward are single rooms with their own bathrooms. After our last stay we found out there is one double room (has two cubicles with a shared bathroom). We were initially put in that room last time as mentioned in the last post, but I got us moved as soon as I found out someone else could come in with us. Although they try not to put people together because they are all immunocompromised, I was told last time that it does happen (quite regularly).
We were told when we found out that Chester had cancer, that we needed to be careful as Chester is immunocompromised. We were happy on the PB ward knowing they all get their own rooms with their own bathroom as it keeps them all safe. His blood counts were low and were only just high enough to continue treatment that week. We have been always told to be careful around others and be hygienic etc. Chester has only had to go into our local hospital once, for 2 nights for a temperature because we have kept him safe, avoided lots of different people, etc, and limited who we see. And when we do see people we do it outdoors and in a well-ventilated area.
So then having to be put in a room and share with someone else throughout the night, is not acceptable for a ward with immunocompromised people. Having to be in a confined space/room and share with someone random, which could also change daily throughout the week, is not keeping Chester safe. We have kept him safe all this time, not to do this. The parent’s beds are also right next to each other with just a curtain in between, so if you were to catch anything off someone else, that would be when it happens!
Chester also is often nauseous daily and certain smells make him really sick/vomit. Sometimes we even have to get rid of our food as he can’t stand the smell, and it’s worse when getting the high doses of chemo he is currently getting when we stay. At one point when we were isolated the nurses were not collecting his poo/wee samples for ages and the smell made him throw up. So sharing a room and bathroom is not fair to him. Also, he was getting himself in a state and having a meltdown at the thought of sharing a bathroom and room with someone. He is only 5 and also going through this horrible time.
Chester had also tested positive for C-Diff on the first two rounds of this chemo and we had been isolated, so sharing a bathroom would not have worked.
We had already explained all these reasons before and said we did not want to be sharing when he was staying and having chemo. But we know what they are like at not listening. So I started to panic that we would be in the spare bed in the shared room, as it seemed strange one became all of a sudden available.
So I asked Christian to phone the main ward to find out what room he was in, as they already knew from last time that we did not want him sharing a room for his safety. Why they have a shared room on that ward is beyond us. And everyone moans about it!
We also thought it was worth checking what room he was in and if it was ready, as the previous two times we had been left waiting for chemo and a room to be ready for hours. (They got us in at 9am the first time, and 12pm the second time, to then not give us a room or do his chemo until 5pm and then not start fluids until midnight). So anyway when Christian phoned they then told him there wasn’t a room available and that the ward was full, and not sure why we had been told one was available. They said they would find out and ring back, but they never did.
So I then rung day ward again and got told they would find out about a bed as they thought there was a bed available (we were just going around in circles)!
They found out and said Chester was going in the shared room with someone else! I told them it had been sorted and that we should not be going in there and also explained again our reasons why and asked for a single room, but the nurse did not consider our feelings. She said we are all “clean” on this ward and was quite rude about it! But we personally don’t know where the other person’s parents have been or how careful they are that we would be staying in a room with, so how can she say we are all clean?
Christian then phoned and explained again, and after the last time Chester refused and had a meltdown about not wanting to be in a shared room because he gets quite clingy and funny around strangers since his diagnosis, we would not even suggest this to him again.
However, the nurse on the day ward did not seem happy with our reasons and kept ignoring him and just saying we were all clean. When he said OK then we will have to wait until Wednesday for a room (as she had told us it’s OK to withhold treatment if no beds are available), she then changed her mind and said “You need to come in it’s important his treatment isn’t delayed further”, but before she said it was fine when they had no beds! You just can’t ever get an honest answer!
Time was getting on in the day, but because we said we really didn’t want to share with someone they went back to talk to the in-patient main ward. They finally got back to us and said they now have a single toom. I said, “Great we will leave straight away”. But she then started to say “Actually, you shouldn’t come as all the doctors go home at 5 pm and you won’t get here until 5.30”.
They just kept messing us around! But Chester needs to be checked by a consultant so we can start Chester’s treatment that day which is his (Vincristine). We said why can’t an on-call duty doctor see him as we had been messed around all day and told originally we were not coming in. So they finally said Yes come in, the doctor will see you, the room is ready, and you will start your treatment once the doctor has given the OK.
Once we arrived we were left with no room until it was cleaned, then went in the room, and saw the consultant. He said we were good to go ahead for treatment, but that they did not have Chesters Vincristine Chemo on the ward and were trying to sort it out. He said for some reason it got canceled.
After finally getting in the room we waited over an hour, and then asked the day ward nurses when is he getting his vincristine. They said something different and said it had been quarantined and taken away because of Lumbar punctures the following day, but we’re sorting it and chasing it up, they said “Give us half an hour”.
We were left waiting in the room for a couple more hours with no news. When I went to ask what was happening the day ward nurses were all gone. So I then asked the in-patient ward nurses and they said they were all in handover and going home and night staff would deal with it! So they still didn’t know what was happening.
Then night staff came on and the nurse said “No you are not getting the vincristine today! It wasn’t even made up and they had been chasing all day”.
So we were told multiple things. They knew we were coming in, so we don’t know why it wasn’t ready! In the end, Chester did not have vincristine on the day as he should have, and as the protocol states! When asked if that was OK they all said yes it’s fine.
Because of previous miscommunication and them always forgetting that Chester is on a different protocol, it has been agreed for this high-dose chemo he goes on fluids at midnight on the day we go in. The night staff then said we were putting Chester on fluids at 4 am but I said it needs to be midnight like agreed with our CNS, and has been done the last two times. In the end, they did it at around 2 am, a totally random time.
The next morning the on-duty consultant said the vincristine wasn’t done because we arrived out of hours. Another different version we had been told, and also not our fault and they also knew we were coming, She also said Vincristine would not be given that day under any circumstances because of safety issues, and that he would have it on Wednesday instead. I said that’s not what is on his protocol and she said it “Should” be fine.
Chester was then left in the room crying in hunger until mid-day for his lumber puncture as he was nil by mouth. Once he was finally called in to have it done, (this being my first time doing it alone with Chester, and was upset and worried) I went back to the room and the nurse then told me I was not allowed to leave the room as they are now being isolated.
I said I was going to wait outside the doors of the procedure room where Chester would wake up as I had promised, and how we have always done it. But they said I was not allowed to now wait outside the door for when Chester woke up. The nurse did not have any compassion about this and expected me to break that trust with Chester!
When I asked again why we were being isolated as Chester doesn’t have loose stools or diarrhea at the moment, she said “We have just decided because of the previous two times of Chester testing for C-diff we are isolating you until he does a solid poo”. But they had let me roam around all morning, they were happy for him the day before to be in a shared room, and waited until I carried Chester down to the theatre room and then went back to Chester’s room before telling me we had to isolate. He also wasn’t symptomatic and they already know that it is the vincristine that usually gives him diarrhea, which he would not get until the following day. This distressed me a lot as there was no reason for the isolation and almost like we were punished for not wanting to stay in the shared room. That’s how we took it.
I asked to speak to infection control and did wait for Chester, but luckily I managed to speak with our CNS and she sorted it out and said that we should not be isolated and not sure why they had done this and why they just decided it randomly in a discussion. We feel they left Chester until last as they knew they were going to isolate them as soon as he went into the LP, and this is why he was left so late so he would be the last child in the room meaning they did not need to clean after him.
It went fine though and he woke up straight after feeling quite groggy. They put a new tube in as he was asleep, as the other one had broken on the cap. And after all the chasing he finally got put on the 24-hour chemo later that afternoon.
Later that day Laura was then told by our consultant (as he popped in to see me) that Chester having the vincristine not on the first day of this round is “not ideal but it should be fine”. This is not very reassuring to hear from the consultant and still worrying about this now.
On Tuesday evening once Chester had finally settled and gone to sleep the nurse did his obs and then kept Laura awake all night in worry and fear as she said his blood pressure was too low and she then had to speak to another nurse while they tried to figure out if this is okay. For some reason, a doctor was not an option and they decided that it should be fine as he has had low blood pressure in the past.
We still don’t know if it is OK. The doctor and a few nurses just say the normal phrase they keep saying “It should be fine”.
Chester was also puffy on Wednesday morning and the doctors did not see this as Chester was asleep however once I had noticed I told the nurse straight away, and it took Laura mentioning it to three different nurses for them to finally decide to ask a doctor to check it later on in the afternoon, again leaving Laura worried.
Chester had been doing really well this time around though. He was very sleepy while having the methotrexate and also the lumbar puncture can make him quite sore, but he was happy just chilling and playing on the Xbox with me and building lego.
They also have charity workers come in and play games, so Chester had fun making paper airplanes.
Christian then swapped with me. We find it best to swap halfway through if we can, as it’s so stressful in the hospital with all the chemo going on and the stress from them keep messing us around.
Christian brought Willow and Aurora along so we could swap over, and it was a nice surprise for Chester. He always misses them when he’s in and it cheered him up.
So Christians part of the stay was a bit smoother sailing as Chester had to be taken off the methotrexate and then given his folic acid 18 hours later. It is then given twice more every 6 hours. This helps bring his levels down of the chemo, as it is so toxic.
When the nurse came in to take Chester’s bloods and do the 2nd folic acid dose, she said we would know soon if his bloods were okay and if he had cleared the chemo. His third dose was due at 8 pm that night and they were keen to leave straight after if his levels had cleared.
So Christian asked, “If his levels are not low enough will you be checking them at 8 pm when he has his third dose of folic acid”.
The nurse then replied and said they would not test again on the 3rd dose and that if his levels had not cleared on the second dose he would have to wait in the hospital another whole day to be checked again because of his protocol.
It seems strange on the protocol that he gets his levels checked on the first and second doses, but not the third. But anyway, Christian asked if she could check anyway as he was told he would be able to go home after that evening, no matter what time it was. She said, “No we have to follow his protocol by the book”.
But they changed Chester’s protocol around when it suited them, and have done before. But this time apparently they couldn’t go off protocol, even though it would mean getting them home quicker. It’s so frustrating! However, it was OK in the end as Chester had done amazing and his results came back in the afternoon that he was cleared of the HD MTX.
Later on, the nurse also brought in Chester’s imatinib and then questioned why Christian would not give the chemo himself as she didn’t want to do it due to extra exposure to the chemo. But in the end, she did give it to him but again this just causes stress and was supposed to be dealt with originally when Christian spoke with our CNS and the matron.
So after a hectic few days, Chester came home. He was feeling a bit nauseous over the weekend so we just watched movies and played games.
The community nurse came out on Monday to check his bloods. He has a week break this week from the methotrexate and as it has been 56 days on this block of treatment he also stopped taking his mercaptopurine. Even though he still has one round of the high-dose stuff left due to chemo holds.
They check his blood to make sure he doesn’t need any transfusions from his levels dropping too much from the chemo. Thankfully they were OK but he just had 0 neutrophils meaning no immunity, so we stayed in all week and hibernated. We have just had a gaming week which he has loved.
The nurse came out yesterday and his bloods have already increased. His neutrophils are back up to 1.4, but his platelets are at 70 and need to be at 75 to go ahead on Monday. So we have to go to our local hospital tomorrow to get them checked as we are now booked in for 9.30 am on Monday for his last round of high-dose methotrexate at our treatment center.
Fingers crossed it will go ahead so we can get this block finished and out of the way, and we will then find out what the next block is.
Chester has been doing great at home though and he has all of a sudden got his appetite back and eating loads, which is great as he lost a lot of weight again and looked quite skinny.
The last few stays in the hospital have been too stressful for us, and it is not on. So we actually contacted PALS to complain, as we are getting nowhere. So hopefully this will get sorted and it will be better when we go in hopefully next week. But we will see and will keep you updated.