Month: August 2017

I returned home on Monday evening after the stem cell harvesting. It feels great to be home again. The kids are very happy and so am I. It is strange how soon everything feels ‘normal’ again. Maybe you know that feeling when coming home after a long vacation. Just a few moments home and the past month moved to the background. It almost feels like nothing happened and things are back to everyday life.
I still am weak and tired, but hopefully, that will improve soon. This Friday, the 1st of September, I am going to the VU for an MRI scan. On the 7th of September, I will be informed about the outcome. There will be nervous times ahead, but for now, I will enjoy being home.

This morning at 7.15h I left the Spaarne Hospital to go by taxi to the VUmc for the stem cell harvesting. I arrived there at 7.50 am. I waited until 8.30h to be finally helped by a nurse. They started with a count of CD34 positive cells, CD34 is a protein that is expressed on the cell membrane of stem cells. With a count they make a guess whether stem cell apheresis is going to be successful that day, they also check whether the number of red and white blood cells are high enough and whether you have enough platelets. In my case, the nurse told me that she had never seen a stem cell count that was so high.
I started the apheresis around 11.30h. To attach me to the machine she stuck a big IV needle on the inside of my left elbow (the cubital fossa) from which blood is sucked out into the machine and an IV on my wrist of the right hand through which the blood is pumped back. They took the wrist here because it allowed me to move my right arm (pumping back blood requires a smaller vein).
The complex apheresis machine essentially is a big centrifuge. Based on the mass it filters out blood plasma and stem cells. I was attached to the machine until 15.30h. In that time they filtered twice my blood volume (in my case about 12 liters of blood went through the machine). I found the procedure painless. I was unhooked from the machine and had to wait for the stem cell count of the extract so that they would know whether or not I would have to return for another harvest tomorrow. They would need 2 million stem cells (I think this is per kg of body weight).
At 17.05h the nurse informed me that they had more than enough. The yield of my extract was a staggering 38 million stem cells, an amazingly high amount.
I finally could take the taxi home to see the kids, whom I hadn’t seen for four weeks since they left for the Philippines on the 1st of August.

My blood values have sky rocketed (due to the G-CSF injections). I am now free to roam around and go outside. A liberating feeling after 23 days of isolation in my room.

I created a video to show the room in which I spent more than three weeks in isolation. In my room, the only sound was the hissing of the air pressure control system.

I experienced some difficult times here in the hospital. The first days in the hospital I was sick of the chemo. Adrienne and the kids were in Manila, and my family and friends were far away in Noord Brabant. During these first days, when feeling sick, in my new, unknown, small, and closed room, I felt nervous, restless or perhaps depressed. It was a feeling that I had never experienced before. This mental state amplified me feeling sick.

On the 8th of July, I wrote about how I disagreed with a comment I saw on a friend’s Facebook page. The saying in the post read: “Be brave enough to hold on to the hope that life will be beautiful again.” I ended the blog post by writing “Nonetheless, waiting for better days does not require bravery. I believe that finding a ray of light on even the darkest days is a real test of one’s spirit.”

Even though I still agree with my statement, I have learned that the ray of light on some dark days can be the thought that this negative state is temporary. Thinking back, keeping in mind that this state is common and will pass, is what helped me to get through those days.

Even now that I am feeling better, the thought of being able to go home soon again and hug the children again after almost a month makes me happy.

Perhaps there is something to the saying “hold on to the hope that life will be beautiful again.”

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.