Perhaps even more important than rising blood cell counts and the prospect of going home on Monday, is that I am feeling a lot better. For more than 48 hours I have had no fever. They have stopped the IV antibiotics and have switched back to my regular six prophylactic antibiotic pills a day. It feels great not to have to unplug and drag around an IV-pole every time I have to go to the bathroom.

They finally injected my first G-CSF under the skin on my tummy (administration does not hurt at all). It took longer than expected to arrive at this point, but the start of these injections implies good news. This morning they told me that my blood cell counts finally showed a rise. My immune system is not back to normal (they mainly look at the number of neutrophils, a type of white blood cell that is involved in fighting acute bacterial infections), when their number is above 0.5 billion/liter of blood, I no longer need to be in isolation or take prophylactic antibiotics. Last Monday their number was 0.0, Wednesday it was 0.1, and today it was 0.3. Also, the number of other cell types showed has risen. All-in-all, this was enough for the specialists to decide that the stem-cell harvesting can take place on Monday at the VUmc, after four G-CSF injections.

I got sick Sunday evening, with 39.6C fever. They are giving me special broad spectrum antibiotics every six hours; these are antibiotics that are reserved for patients with no viable immune system. As you have probably heard or read, more and more bacteria are becoming resistant to antibiotics due to their overuse. Since I have no immune system, I am completely dependant on antibiotics to fight bacterial infections. Which is why no chances are taken and the most potent antibiotic is used.
I was quite sick yesterday (Monday), with fever spiking to 40C. Also, my blood results showed that I was even deeper in the dip than before the weekend. They gave me extra platelets and a blood transfusion for red blood cells. Hopefully, the numbers rise soon; I could use a functioning immune system.
Today I am feeling a bit better; I hope that this continues.

On Friday they told me that my blood cell counts are still close to zero and don’t show recovery yet. They gave me another bag of blood to replenish my red blood cells. They also told me that the preliminary date (Monday the 21st) at the VUmc for the stem cell apheresis is not realistic. The date will be pushed back and depends on the blood results of Monday morning. Because two days of stem cell stimulation injections are necessary, the earliest day possible for the apheresis at the VUmc is Wednesday.

In the mean time, I just have to wait and hope I won’t get sick. Luckily Adrienne is here and we can play a board game.

As you probably have read, I am in isolation. On the outside door to my room, there is a note reading “HIC protocol.” HIC stands for Haematologic Intensive Care.
My visitors do not have to wear special yellow hazmat suits, and I don’t have to reside in a closed plastic tent as if I am infected with Ebola.
My room has a sort of airlock with double doors that everyone has to pass to get in. The air pressure in my room is slightly elevated, which means that potential airborne viruses are prevented from entering the room. Everyone that enters the room, no matter how short, has to disinfect their hands with rubbing alcohol. Also, I should minimize physical contact with visitors to decrease the chance of them transferring any pathogens to me. Maximally three people (including myself) can be in my room at the same time. Meaning that when my parents are visiting, one of them has to leave the room when a nurse comes in. Visitors with active infections, the flu or a cold are urged not to visit.
Apart from these things, there are no further restrictions. It is apparently unlikely that an external pathogen will infect me. The nurses told me that in more than nine out of ten cases, infection occurs due to a virus or bacteria that was already present in my body.

Since Friday I am officially in ‘the dip’, by which they don’t mean a persistant negative mental state.
The chemo agent Ara-C that was administered August 4-7 suppresses the bone marrow as a side effect. The bone marrow creates hematopoietic stem cells, from which white blood cells, red blood cells, and platelets are formed. Due to the temporary suppression of the bone marrow, these stem cells haven’t been formed and subsequently, all my blood cell counts are extremely low. My immune system (white blood cells) is non-existent at the moment; when the count of leukocytes drops below a certain threshold they refer to this as ‘the dip’. Also, my red blood cells (oxygen transporter) and platelets (blood clotting) are extremely low, that is why I am currently getting a blood transfusion, giving me red blood cells, and platelets from a generous donor.
They are waiting for me to get out of ‘the dip’. Recovery means that hematopoietic stem cells are again being produced by my bone marrow. When blood lab tests (being done on Mondays, Wednesdays, and Fridays) show that this is happening, they will stimulate the formation of these stem cells by injecting me with g-csf (granulocyte colony-stimulating factor) for two days. After this, I will be brought to the VUmc, where with a special dialysis-like device, they will extract the hematopoietic stem cells from my blood. These stem cells will then be frozen so that they can be readministered after the final round of chemo.
The final round of chemo, consisting of carmustine and thioTEPA, will completely destroy my bone marrow as a side effect. To repair the demolished bone marrow, the frozen hematopoietic stem cells will be re-administered after the chemo.

At the moment I am doing fine, I have no major side effects from the chemo and have no infection.

Thank you all for giving me stuff that I can use to brighten up my room. I appreciate everything that people have done to improve my long and isolated stay in Hoofddorp.

There is an incredible amount of pills that is being given to me as a prophylaxis. Mostly anti-bacterials, or anti-fungals to make sure that I will not develop an infection without an immune system.

Here is an overview:

7.00h

• metoclopramide (anti-sickness)
• feneticilline (antibiotic)

9.00h

• paracetamol
• vitamin D3, cholecalciferol
• dexamethasone eye drops (against eye infection)

10.00h

• ciproxen (antibiotics)
• fluconazol (anti-fungal)
• tobramycine (antibiotic drink)

11.00h

• metoclopramide (anti-sickness)
• feneticilline (antibiotic)

14.00h

• tobramycine (antibiotic drink)
• dexamethasone eye drops

16.00h

• feneticilline (antibiotic)

17.00h

• metoclopramide (anti-sickness)

20.00h

• tobramycine (antibiotic drink)
• dexamethasone eye drops

22.00h

• ciproxen (antibiotics)
• feneticilline (antibiotic)

 

Adrienne is back from Manila and is here for an extended visit, which is great. She is using the ‘guest room’ of the department and is still asleep (who blames her, it’s 8.20h on Saturday).

I am feeling a bit worse again. Yesterday and today I started the day by throwing-up my breakfast. Luckily I don’t feel close to as bad as I did during the chemo. Hopefully, like yesterday, the rest of the day will be rather ok.

I have started to feel better since yesterday. Apart from being super exhausted after doing anything (even walking to the bathroom), I am doing much better. This weekend I felt sick, nauseous, had a headache and was shivering. Luckily these symptoms have stopped since the chemo ended Monday night. They gave me the chemo agent Ara-C for four days (Friday–Monday) and then twice per day; 9-12h in the morning and 21-24h in the evening. 

Yesterday I also changed the room, they had a bigger, more modern looking isolation room free. This room looks bright and is more spacious.

As a side effect, this chemo will wipe out my immune system, which is why I am in isolation. They monitor the blood levels of the lymphocytes and when they start to grow again (they are still dropping now), I will be admitted to the VUmc, for the stem cell harvest. Their guess is that that will happen around two weeks from now.