It was time to return to our main treatment hospital on the Monday for Chester’s second round of high-dose chemo, the HD MTX.
So as always, we arrived at the treatment centre but yet again we didn’t need to be there at the time they asked us to be! We were asked to get there at midday, and they didn’t even have a room available for us, so we were left sitting in the playroom for hours. He received his dose of Vincristine while we waited in the playroom.
After chasing we finally got taken to a room for Chester on the ward, which turned out to be a shared room which we were told Chester should not be in during treatment etc. Especially where he has also had C-Diff on and off, he shouldn’t be sharing a toilet with someone else with low immunity. Luckily there was no one else in there at the time, but they told me there was a chance we would have to share if an emergency came in, etc.
I then noticed a single room which we usually get had become available, and the nice cleaner lady arranged for us to be moved into the room.
I was originally told we had to get there at midday and that he would be put straight on to fluids and then have his 24-hour high-dose chemo as soon as possible. Because he wasn’t having a lumbar puncture this time it could be started straight away. But after we were left in the playroom for hours and after chasing, they told me it was too late to be put on the fluids and would start at midnight. This was so frustrating as we had been waiting around all day!
I spoke to our CNS and asked why we keep getting told to come in so early but then they don’t start until midnight and how unfair it was. She said we should be coming as late in the afternoon as possible just because we have to see a doctor, but that on Chester’s chemo protocol for Philidelphia Positive Leukemia, his fluids will always start at midnight. However, the other nurses were not checking when booking us in that he was on a different protocol than everyone else and just going off the standard leukemia protocol. So at least we know for next time what is happening.
But it’s quite worrying that they are not checking which protocol he is on each time. As they don’t do Chester’s one much at all, they assume he is on the standard one and not the EsPhall one. This is very worrying as they should always be aware and checking.
So anyway, later on at midnight, they put Chester on loads of fluids to increase his PH level. Turns out it was already high enough to start the chemo without the extra fluids, but because they didn’t check his PH level soon enough and with all the miscommunication errors, it couldn’t go on until the next morning!
The next morning he then received the HD MTX (High Dose Methotrexate), the same chemo drug he had on his first week of frontline, and will have on the next two visits. Again, Chester handled both the Vincristine from the day before and the High Dose of Methotrexate like a champ.
Before they went to put on his high dose stuff though, the senior nurse all of a sudden went “STOP! He’s on the EsPhall protocol, we need to do the calculations and timings differently”. So off they went for 20 minutes to recalculate everything. I think the dosage is the same thankfully, but Chester’s protocol needs a stronger pulse of chemo at the start. But they keep not checking which one he is on, so we have to keep reminding them.
Later that evening Christian came and swapped with me. As he arrived, we then got told by the nurse that he is not allowed to leave the room and isolate because Chester’s poo had become slightly loose. But in the end, another nurse higher in charge said until the results come back from Chester’s loose stalls, Christian does not need to isolate and has free rein of the ward. Strangely though yet again, I had been allowed to go in all the public areas for two days while he had loose stools.
The next day the results came back and found out Chester tested for C-diff again. However, the toxicity of it was false, meaning no one would be able to catch it. But despite this Christian and Chester still had to stay isolated with no access to any facilities and then having to rely on the nurses again to get stuff for them both!
So Chester and Christian had great fun as always playing some Minecraft on the Xbox as each room has an Xbox and built some cool things, watched movies, and just chilled while they waited for the levels of Chester’s methotrexate to drop. They measure to see how much of the Methotrexate he has flushed out of his body.
Once 18 hours had passed the nurses then gave Chester folinic acid to help flush out the rest of the Methotrexate which he then has every 6 hours, three times in total. While they waited they then ended up having a flooded bathroom and were told they could not use it, so Christian then had to use the staff toilet. This was because he was not allowed to use the public toilet due to isolation because of Chester’s non-toxic C-diff result! You just couldn’t make this all up.
They then also had the infection control lady pop around to ensure all the staff were wearing their aprons and gloves when entering the room, which Christian then pointed out to her that she wasn’t wearing gloves and aprons. But apparently, she is exempt from the rules for some reason as she said she washes her hands after leaving!
When Chester is connected to all the fluids and chemo, it is attached to his central line (which goes directly into a vein) and it all goes through a pump on a machine. Sometimes the pumps beep and say there is a blockage or an air bubble which can they detect. You have to call a nurse and then they flick the air bubbles back up to the liquid so that they don’t go into Chester’s bloodstream. However, one morning there was a large air bubble and Christian called a nurse. He noticed that she was flicking the bubble toward Chester’s line! He asked her to stop and get another nurse. The next nurse said, “No she should not be doing that and I will have a word with her”. It would be quite scary if she had done that to someone and caused serious damage.
After all this though Chester was again fit and healthy to come home, despite still having constant diarrhea. After a few days of being at home, Chester carried on having loose stalls and even waking during the night needing the loo. We did mention this to the community nurses but they didn’t seem to be concerned and quoted the famous line “Just keep an eye on it”. But to be honest, it was unfair and we even asked if he could have something to help clog him, but they said no.
Later on in the following week, Chester came down with a high temperature in the morning so we then had to take him to our local hospital to be seen by a doctor and have antibiotics to protect him from all infections, as Chester could become very unwell if his line etc became infected.
We arrived and the room was ready. The doctor saw Chester very quickly and they also had the antibiotics in him pretty quickly. They also took his bloods and had to do some swabs for other infections, and asked for some wee and poo samples, etc. They also did his OBS and at the time Chester’s temperature had gone back down, but he was still very hot to the touch, not talking, and just looked unwell. So it did not make a difference with his temperature going back down, he still needed to be treated.
Christian and Chester were then taken down to another room where they would be staying for the next few days so they could keep an eye on Chester. In the new room, Christian had a poo sample and told a nurse, then another nurse, and nearly 2 hours later the nurse still did not take it. She then actually tells Christian she won’t take it until she knows what to do with it, despite Chester even telling her that it’s making him feel sick.
Christian then also had to ask again for the third time for the anti-sickness medicine and stuff to make Chester’s chemo, as the local hospital does not know how to do it. She then replied to Christian and said Chester is not allowed to have the chemo as the doctor said. Christian tried to explain and tell her he has to have his imatinib daily no matter what unless told not to by our consultant. She then argued with Christian and would not give him the stuff to give Chester his chemo.
Christian then asked to speak with a nurse in charge and the nurse stormed off. The nurse in charge arrived and took the poo from outside the front door (where Christian had left it as Chester was going to be sick), she then also brought in the anti-sickness straightaway and also then got the doctor to come in the room and then gave the clear for Chester to have his Chemo, and she also helped Christian sort it all. It was all sorted so easily.
Not sure what the other nurse was doing but Chester was not very well and to then ignore his request asking her to remove the poo and still not bring his anti-sickness is not very nice.
Later that evening one of the oncologist doctors came to see Christian and said it’s a good thing that he did not listen to the nurse and gave Chester his chemo, as she even said he is never to stop it unless told by herself or his main treatment center and not a nurse or standard doctor.
The next day on a Friday Chester woke up bright and full of beans again and because of this and his temperature staying around the same during his visit, they were then allowed to return home so we could all be a family again.
As it had been a week since his second round of HD MTX, Chester was due to go back into the treatment center for his third dose on the following Monday. His bloods were too low to go ahead at the current time, but the main treatment center believed his bloods would be fine and go up enough by Monday to go ahead, which we thought was very strange! (Turns out our main consultant from the treatment hospital was just taking a chance and was going to have us drive a 60-mile trip on the chance his bloods would be high enough. They would then do a test there, and if they were not send us home).
I then arranged with our community nurse to come out first thing Monday morning, so we would know if he was good enough to go ahead instead of us driving all that way.
Going back to leaving the local hospital, we did have to pop back in for an hour over the weekend, just to get stronger antibiotics in one dose to cover all the nasty things just in case. The doctor at the time also asked why Chester had not been given anything else for his C-diff and said it was unfair that he had had to have a bad tummy and diarrhea all this time. The doctors there then prescribed Chester Fidaxomicin for the C-diff, and it has worked like a charm as within days he no longer keeps running to the loo and has an appetite again.
The blood results from Chester’s cultures also came back negative over that weekend, so he didn’t have anything bacterial. The random spike in temperatures and day of feeling unwell that ended him up in the hospital was probably just a 24-hour viral thing. But each time he has a temperature at home, we have to get him checked.
Chester is starting to question how much longer he needs to keep going to the hospital and keep taking all the medication that he is currently on, as he has to take it daily. It’s very hard as we have to keep telling him that we just need to do it and not sure how long, but there is an end to it all. It’s not nice seeing our little boy getting sad and thinking that he has to do this for the rest of his life we do keep telling him it’s not forever, but I feel like it’s all starting to get a bit on top of him now.
The next couple of weeks were not too exciting. As me and Christian thought, his bloods were too low to go ahead on that Monday so he was put on hold for a week.
We then had his blood tested the following Monday and the community nurse told me his bloods were high enough. But strangely I had a call from our main treatment centre saying that we were on another week’s hold because his counts were too low. It was very confusing.
It turns out that we couldn’t go in because yes his blood results were too low and our local hospital/community nurse had given me the wrong numbers or written them down wrong. But also our main treatment center keeps going off bloods from previous weeks and not looking at the most current ones, so I have to check every time now when they phone me with the plan! It’s just ridiculous with the lack of communication and people getting things wrong. Luckily me and Christian are on the ball and do their organizing for them.
So we were on a week break again and just had fun spending time together and even managed to venture out of the house to Moors Valley when it was sunny this week. The kids loved it and had great fun and was a nice finish to the week as we know from doing Chester’s bloods this morning that he is going in for round three on Monday.
But as he has had a nice couple of weeks for his body to recover he has been feeling quite well in himself and moving around quite a bit. And Chester has been playing and keeping Willow and Aurora laughing!
