Day +7

My blood counts have dropped, my platelet count is now 4 and the normal range is 150-400 (in some arbitrary units) and my hemoglobin count is 5.3 and the normal range is 14-17 g/dl. My counts are so low, that I am getting a bag of donor platelets and three bags of red blood cells. These transfusions will hopefully make me a bit more energetic and the platelets will make my blood clot again (I noticed that there are small hemorrhages on my skin and blood in my nose).
Together with the platelet and the red blood cell counts, the white blood cell count is extremely low (they report <0.1), which means that I am very susceptible for infections. White blood cells can’t be transfused from a donor, these would recognize the cells in my body as foreign and attack them. To minimize the risk of an infection, I am given many antibiotics and anti fungals. For the rest I am having tummy ache and generally just don’t feel great, but it is more than bearable. Today Thomas and Nils came over for a visit, but Thomas was complaining about tummy pain and Nils sneezed, so unfortunately they quickly had to leave again. It is better to be safe than sorry as an infection, when uncontrollable, can be fatal.

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Day +4

The past weekend has been mostly nice. Adrienne and the kids stayed at a friends house here in Amsterdam this weekend and they visited me every day. At times when they enjoyed the playgrounds and were playing in ‘kinderstad’, I took my much needed rest. It is nice that the kids don’t find visiting is boring. My parents also visited on Sunday which was great. I understand that Amsterdam is far away, I am grateful that people happily take the time to travel here.

They started me on the antibiotic ‘amoxicilline’ after they administered my stem cells. I had an allergic reaction to this and my torso and groin developed a rash and started itching. They switched medication on Saturday and the rashes and itchiness have reduced, improving my sleep.
I have officially entered ‘the dip’ today as my immune system is virtually non-existent. Next to the white blood cells, the number of red blood cells and platelets have dropped as well. As a result of the low amount of thrombocytes, I am bleeding more quickly. Everyday activities are extremely exhausting at times. This morning I even had to take a rest in between brushing my teeth and having a shower. Some parts of the day I feel ok, and at others I have tummy ache and today I had to throw up. It seems unpredictable. It is all part of this treatment and I just have to ride it out.

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Friday the 13th

Today was Friday the thirteenth, luckily I am not superstitious. It was a relatively good day. I didn’t feel nauseous anymore. My mouth is still hurting and I am very tired, but nonetheless it was a nice day. Adrienne and the kids visited, and they had a nice time. Together with Adrienne the played in Kinderstad. When I was in the neurology ward I accompanied them. Of course now I can’t leave the hematology ward, and I also needed the time alone to recover from the family‘s energetic presence.

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Day 0, getting the stem cells back

I just got a part of my stem cells back. They harvested 38 million stem cells / kg body weight, but the maximum that they give back is 5 million (more has not shown any additional benefit). Reinfusing the stem cells took only ten minutes. Now it is up to them to repair the damage the chemo’s are doing. The dip in which my blood cell counts drop to zero will start any day now. Without reinfusion of the stem cells recovery would take 7-8 weeks (with all risks of infection extended), with the stem cell reinfusion they expect the dip to take 2-3 weeks.
I still feel somewhat nauseous and my mouth has started to hurt, this could indicate the start of mucositis, something very common after the chemo’s and unfortunately very painful. I can just hope that this time will pass soon without too many negative events.

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Day -1

Tomorrow I will be getting my stem cells back. Today I still felt nauseous and fatigued, it is clear that the chemo’s are having their effect. Blood results of today showed that I am not yet in the dip, but that my blood cell counts are dropping. Many patients celebrate the reintroduction of the stem cells as it were their rebirth. I don’t yet feel like celebrating, there is still a weeks long road to go. I hope that I will not get a nasty bacteria, virus or fungus while my immune system is non-existent. I feel like celebrating when this is all over.

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Day -2

Today I felt a bit sick and nauseous, Eventhough I din’t have much energy, I still walked a few rounds over the department, I spent some time on the cross-trainer and I even trained my muscles with the fysio therapists. There were no visitors today, so I spent the afternoon and evening with Netflix.

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Day -3

I am not feeling too great today, I feel a bit nauseous and tired. I still managed to walk around a bit and to have a work-out with the fysio therapists. They have a nice exercise room here. The rest of the day I spent in bed. I hope that tomorrow will be better and not worse.

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Day -4

Again ThioTEPA was administered in the morning at late at night. Luckily I could sleep during the admission of the chemo. In the afternoon my parents and my sister visited which was great. It is a long drive to get here, and I appreciate the effort. My tummy is feeling slightly strange. Probably the chemo is starting to cause some inevitable side effects. 

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Day -5

They administered ThioTEPA in the morning around 11.00 a.m. and twelve hours later at 11.00 p.m. I had no direct side effects from this chemo. I feel just a bit nauseous but that could also still be a result of yesterday’s chemo. The openness of the ward makes a big difference, I can walk around, talk to people and make use of the exercise equipment if I feel up for that. I notice that feeling at peace with the schedule makes a big difference in my attitude. In the Spaarne Hospital in my previous course, they made a last minute change to the treatment schedule which they only explained after the chemo which was in the weekend. Now I have the feeling that this treatment is the best and also for the MS, that helps a lot. 

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Day -6

According to the treatment scheme, I am now in day -6. On day zero I will get my stem cells back. Today they administered carmustine, it made me nauseous and caused my face to hurt. The chemo was administered over at two hour period, luckily after that, the side effects cleared up. All that remains now is tiredness and a bit of a headache. Hopefully the chemo tomorrow will not have many side effects. None of the nurses here have any experience with the drug ThioTEPA, so they can only speak of possible side effects from literature and not from their own experience. The chemo will be given twice a day, once in the morning for two hours and once twelve hours later. I will have the same on Sunday.

Today Adrienne and te kids came over to visit. I was a tired and nauseous when they arrived. Adrienne took them to  kinderstad (a large indoor play area, on the top floor) so I could rest and the kids could play.. We had some time together when they came back so they could check out the ward, and as Adrienne brought dinner, they could eat here as well.

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