Road to Bart 2.0

We are trying to find a routine in our daily life.

Although every day start the same, there are distinct differences which leaves us with mixed emotions.

Monday is Immune Therapy day

Monday is the only day in the week the alarm clock is set. Bart needs to be in the hospital at 9:00. Needless to say that Mr Van de Walle is a real Boomtown Rat and the good morning I receive is one with anticipatory anxiety. Like a boy going on a school trip, packed with his lunch and medicine, we leave at 8:15 for the 10 km trip. Avoiding school traffic and anticipating traffic jams on the Brussels Ring. This week a new medicine was added to his Immune Therapy. His white blood cells are up to 5400, about half of what they should be. His weight is up 3 kg. (The Cookie monster has finally shown his true colors.) Hematocrit is still a bit low.

Every Monday, we are happy the values go up. But the doctors always have a warning. Yes, you are doing great but be aware that a relapse can happen at anytime. Yes, you are doing great but keep up the calorie rich and bacteria poor diet. If you get an infection and have to come to the hospital, you will be sooner in the ICU than you think and in your condition, we don’t know if we can pull you through.

It seems that every time, they put the fear of God in you. Not a very nice feeling, but it does keep us in check.

Tuesday & Wednesday are days to quickly forget

Bart mostly sleeps on Tuesday and Wednesday. This week however, he was hurting in his bones, due to the additional medicine he received on Monday. He had pain whatever he did. Walking, sleeping, sitting, it all hurt.

Thursday comes after Wednesday

On Thursday, I start seeing the flashes of the old Bart. He cracks a joke now an then. He also started watching the cycling races on TV. Something he never did before. It seems super boring to me. If it’s not cycling it is CNBC. He watches the rise and fall of the stock market hours on end. Now this is ultra boring to me. I didn’t study Economics, maybe that is why.

Friday is the beginning of the weekend

He’s back. Bart in full force. Joking the whole time, going for a walk around the block. Having physio therapy. Trying to organize my life. (I write trying because whatever he says, I just do my thing and ignore whatever he says). Friday is also the day he shaves. His hair is starting to grow back (the hair he had before the chemo. What was lost, stays lost). Funny enough, his moustache is still dark but all other hair is white. If he would let it grow from now on, he will look like Father Christmas in December.

The weekend

This is the best time of the week. No more side effects of the Immune Therapy. Kids are at home and keep him occupied with their accounts of what happened the previous week. Every time he gives them good parental advise, trying to be implicated in their lives. They mimic me and ignore him and keep on living their lives the way they want. Which is actually no change from before he got sick. A bit of normality and continuity in our lives is a good thing.

We have had some short but meaningful visits from friends and family.

Although doctors keep insisting, the road ahead is still long and he isn’t out of the woods yet. We try to make the best of what we are dealt with. It would be boring to make lemonade when life gives you lemons. At least when you make Limoncello, you can enjoy a hangover.

Happy times.

No, we didn’t go on a safari in Africa. (I wish).

Monday was a dream day. If Immune Therapy was going to be like this, it would be a walk in the park. One down, 25 to go. Bart, we got this.

Tuesday, a 180° turn. The doctor had warned that the second day might be a bit different. And, oh boy, the difference couldn’t have been bigger.

The side effects of the immune therapy are headache, nausea, dizziness, fever and stomach ache. He had them all. He could barely eat. Slept almost all day and when he didn’t sleep, he wasn’t in a good mood. I was relieved when Tuesday was over, thinking Wednesday would be better.

Wednesday was better, albeit just a bit. But better is better, which is positive. He ate more and was in a better mood.

Thursday he still had some faint side effects but nothing mayor. Our conclusion was, 2 days out of the week feeling like sh*t to get better is a good deal and we will take it.

Charlotte called around 17:00. Oma, Bart’s mom, had taken a bad fall. The ambulance was called. They couldn’t take the stretcher through the staircase and the elevator was too small. They called the fire department and they hoisted the gurney over the first floor balcony onto the street and into the ambulance. I took Opa, Bart’s dad, to our house as the paramedics said it would take at least an hour before we could see her.

We called the hospital before going there. They said her hip was broken but probably wouldn’t operate today as casualties of a car crash came in and had priority due to the severity of their injuries.

This morning, we got a call that Oma was brought to pre-op. An hour later, another call. Oma had fainted during the pre-op interview. Just to be safe side, a neurologist was called in. He decided Oma had to have a CT scan. Once the results from the CT scan are in, they will reschedule the surgery.

This week we had the good, the bad and the ugly. Hopefully next week will be better.

After his homecoming on Thursday afternoon , everything revolves around Bart. First special breakfast, then his medicine, followed by a first nap. At noon, second batch of medicine, lunch followed by second nap. Around 14:00 to the couch and time for some television. At 16:00, third batch of medicine followed by a short nap. At 18:00, fourth batch of medicine and dinner. Than fighting against the fatigue to stay awake until 22:00 to take the last batch of medicine.

Today he started his first session of immune therapy. At 09:30 we had to be at the hospital. Packed with his medicine for the day and drinks, snacks and lunch, we arrived on time, despite the traffic jams and the huge car pile up on the Brussels ring. It had a little bit of a first school day vibe.

Once settled in, they started with drawing blood. The results were good. All in the green. The doctor commended Bart on all the positive results. Kidneys : ok, liver : ok, blatter : ok.

The all clear for starting the immune therapy was given. Five bottles given through the drip. Thirty minutes per drip. At 13:00 he called to pick him up. He was doing great so I thought it was time for a little detour. I dropped Bart off at his parents condo, just to see his parents after almost 7 weeks and to give them a hug. Tears flowed. Not even 10 minutes later he was back in the car and we drove home.

After an eventful and emotional morning, he went straight to bed and took a long nap.

I hope we have found our routine and we can continue on this positive élan.

No doubt there will be difficult moments in the future. But right now we savor this small win.

Yesterday, the doctor gave Bart the green light to go home. Marie and i rushed to the hospital to pick up the patient. The doctor had car trouble (she knows how to pick her days) so she started of her day with huge delays/ She had to give the final ok. After waiting for 1,5 hours, we finally closed the door to room 8 for the last time. A very emotional moment. Then the walk to the exit and to the car. It was a lot further than he remembered but he made it. The car ride was somewhat different. Bart was amazed by the scenery, the sun & the rain. He thought the world had changed in the 36 days he was in the hospital. To Marie and me, it was still the same.

The children and I have created a Five Star service for Bart. We eat what Bart wants to eat. We watch on TV what Bart wants to watch. We sit with him when he walks on the treadmill. We wait in front of the door when he takes a shower. We walk with him when he goes from the living room to the kitchen. We bring him snacks and drinks. We basically never leave him alone. I presume, this will fade in time as we are reassured he’s really doing fine. For now, he has to live with it, he has no choice.

We also supervise the intake of all his medicine. And believe me, it it such an incredible amount, it is just insane.

Everything he eats, drinks, all medicine he takes, all physio and exercise he does, must be noted in a diary that he needs to show the doctor every week he goes to the hospital for his immune therapy. It reminds me of kindergarten. Then again, he’s only a couple of weeks old 🙂

The best thing about Bart being home is that I can kiss him again, hold his hand and look at him whenever I want. I am never letting him go again. He’s mine.

I hope you will have a great weekend. Don’t forget to enjoy life.

There were more downs than ups this week.

Monday

The doctor urged Bart to start eating. If not, he would end up in the ICU and the transplant would have failed. During our daily visit, we had a long talk, with a lot of convincing on my side to start eating. After I got home, he called and said he had eaten, not much but a beginning.

Tuesday

His blood values went down, especially the white blood cell count. Nothing to panic about the doctor said. All is normal. He started to loose weight rapidly. Another kilo today. He eats but not enough. The doctor promises him he can go home for the weekend if he stops loosing weight, his blood values are up, he is not nauseated anymore, he can walk down the hall a few times and do the stairs, he isn’t feeling like he is going to faint every 5 minutes and his blood pressure is not too high When he does come home, he needs to go straight back to the hospital if he skips one meal, vomits to much, is feeling light headed or has a fever. We knew this was going to be a tall order, but we had hope, lots of hope.

Wednesday

Second day in a row his blood values went down. Another kilo bites the dust. Not a good day especially as the home stay is in jeopardy.

Thursday

Blood values are critical, all of them : white, red and platelets. He has a severe kidney infection and is back on antibiotics. He lost another kilo. He fainted during physiotherapy. The home stay is cancelled. And this is what hit hard, too hard. His moral was below zero and nothing I could say or do, made a change. Rock bottom.

Friday

His white blood cell count is up. Not much, but hey, we will take it. All the other blood values are up very slightly, out of the danger zone. He needs to take all his medicine in pills now. He’s at 18 pills and a couple of liquid medicines. This makes it harder to eat, or to keep the food in. Result, -1 kilo. The weight loss really starts to show, he looks thin. Moral is back up. He is ready to fight again. The kids and I went to visit him today. First Bram and me, followed by Louise and Charlotte dropped in after work. We kept him awake as long as possible in the hopes he would have a good nights rest or at least sleep more than 2 or 3 hours at the time.

Saturday

It worked, he had a good night sleep. Didn’t even wake up when they came to draw blood at 04:30. I was waiting for his phone call and got really worried. When he called, he sounded rested, wasn’t in pain for the first time in a long time. Marie & I visited him in the afternoon. We had to wait till 16:00 to get the results of his blood. They were good. Again everything slightly up. Hopefully this is a new trend and he keeps it up. As the blood values go in the right direction, the weight isn’t. Another kilo vanished. He tries to eat, one small bite at the time, fighting the nausea. But he isn’t eating enough calories as his body is requesting immense amounts of energy to produce white blood cells and fight the infections.

Clearly, Bart still has a long road ahead of him. There will be other ups and downs, but hopefully more ups than downs. And the Duvel at the end of the tunnel becomes more and more appealing.:-)

I used to play this game as a young child. On your turn, you spin the spinner and move your pawn, square by square, the number shown on the spinner. Any time a pawn ends its move on a picture square at the bottom of a ladder, that pawn must climb up to the picture square at the top of the ladder. Any time a pawn ends its move on a picture square at the top of a chute, that pawn must slide down the chute to the picture square at the bottom of the chute.

Never thought it was based on real life or Bart’s life at this moment. It seems he has climbed a few ladders an slid down a few chutes, mentally and physically.

His white blood cell count was up every day with the help of some injections in his belly. Yesterday, the injections stopped. Today, his white blood cell count in significantly lower. All his other counts are very low as well, platelets, red blood cells,…. And the counts that are up, are really up and not good : blood pressure, bilirubin and glucose.

Eating is another problem. His taste has disappeared and will only return in 2 or 3 weeks. If he doesn’t eat at least 3 meals a day, he can’t come home. Because he is not eating properly, his stomach is hurting as there is too much gastric acid.

There is good news, he has shaved his beard and still looks as handsome as ever. He finally found a good position to sleep so his frozen shoulder doesn’t hurt as much and had a decent night.

His spirit goes up every time we visit and video call.

When Louise was small, she needed to go to the Frankfurt University hospital with an ambulance. Bart chased the ambulance at 190 kmh on the German highway. In the ER he blew up a blue glove and drew a face on it to distract her and make her smile.

Twenty years later, roles are reversed. Louise blew up a blue glove and drew a face on it to distract him and make him smile. Small gesture, big impact. It was heartwarming to hear him tell me the story. The inflated glove is stuck to a whiteboard in his room and he points it out every time I visit him.

When we video call, he makes me walk around the house and show him every room. When I am visiting, he gives me lists of things to do and reminds me to do them with regular interval which suits me as I forget everything at the moment. I only have Bart on my mind.

He misses home, the family, his friends and colleagues and is not looking forward to minimum 3 more weeks in the hospital.

Please keep sending him short videos, it keeps him in the loop and lifts his morale.

Sunday March 5th is my new favorite day. And judging from Bart’s reaction and 100 video calls I received, it will be his as well.

My MO is the same every morning. Glued to my phone, waiting for a call from Bart.

Sunday was no different. Just before 10:00 he calls. He is crying, trying to talk. He says that he hurt all night, his back, shoulders and knees. At one point he sat on the floor, hoping that the cold floor would give him some relief. Around 9:30 the doctor dropped by. She asked if his back, knees and shoulders hurt? Bart said yes. She says good. Do you know what this means. Bart says no. She continuous by saying that they counted his white blood cells this morning. His count increased from below 100 to 700. The treatment worked. Congratulations Mr Van de Walle.

I started laughing and crying at the same time. Asked him if he was sure. This was our best phone call yet.

We reached out to family and friends to share the good news. Everybody we called was very emotional and many cried.

He called me about 20 times. He started every conversation with: “Catherine, I have white blood cells.”

Today his white blood cell count was up to 1500. Still a work in process but definitely on the right track. The doctor mentioned that is will take 90 days for his blood platelets and 2 cycles of 90 days to have his red blood cells to be back to normal. In 180 days to go.

He started his immuno hemoglobin treatment today. No rest for the wicked.

The physiotherapist came by today and concluded that the pain in Bart’s left shoulder is due to a frozen shoulder. He must have had a tendinitis in his shoulder before he went to the hospital and after 18 days of laying in bed it resulted in a frozen shoulder. This week they will be pulling and tugging on his arm, in the hopes to loosen the shoulder.

The good news is that his liver and kidney infections are almost gone.

Bart is now keen to come home. He hopes they will release him by March 20th. I personally think that will be too soon. When I tell him to ask the doctors, he says no, I am not going to ask. If they say a later date, I am really going to be bummed.

Today Bart was better. Don’t believe me, judge for yourself

Hell is where Bart is now. According to doctors, he will remain there till Friday at the earliest and Monday at the latest

Not one cell of his body isn’t aching. Old healed fractures feel like new ones due to his diminished immunity.

His blood pressure dropped so significantly that he faints laying in his bed.

He had a nose bleed during the night. As he is on blood thinners, it took a while to stop. They can’t stop the blood thinners as this will hinder the growth of the new stem cells.

He had a high fever this morning due to an infection. They gave him broad spectrum antibiotics and went looking for the cause through ultrasound but couldn’t really find the source. By this evening the fever had subsided. The doctors and nurses stay vigilant.

They have solutions for every ache, pain and hurt. It is like choosing between between a rock and a hard place. And that decision, more often than not, means that Bart has to suffer the ache, the pain or the hurt. If not, his chances of a successful procedure will diminish like snow before the sun.

As I am portraying the gloom and doom state Bart is in and I am worried sick. The doctors however have said, this was all to be expected and everything is going according to plan. Friday/Monday we should start seeing change, positive change.

Keep those fingers and toes crossed. Light a candle and drink a Duvel to Bart’s health. Especially the Duvel will help him:-).

Friday evening started on a high. My goddaughter Emma was working at a telethon for “Kom op tegen kanker” and send through these videos

Thank you Emma. Bart really appreciated it.

Johan, our brother in law, send this video through. Bart was really impressed.

Around 22:00, the tables turned. He called me : He was feeling awful, looked awful, sounded awful. Half an hour later he called back saying he was feeling a bit better, the ER doctor had prescribed him new medicine. He still looked awful and sounded awful. I guess, he just wanted to put our minds at ease and allow us a good nights sleep.

When I woke up on Saturday, I waited for him to video-call me. When he finally did, I panicked. He almost couldn’t talk. He said that his stomach was hurting as if someone had bashed him up. He felt immense pressure in his chest area. His kidneys were hurting. The list went on and on. Not a good day. He now has an ECG every three hours, all medicine through his catheter as he has difficulties swallowing. They took an echo of his lungs and saw nothing out of the ordinary.

Bram and I went to seem him as soon as visiting hours started. I couldn’t wait any longer, I had to see for myself. To my great surprise, we can still go in if we put on the shoe protection, the apron, the gloves and the mouth mask. He was asleep, so the first couple of minutes I just watched him, trying to absorb every small detail of his being and sending him my whole heart filled with love and positive vibes.

He must have sensed it because he woke up and said: “I never felt this horrible in my whole life, I am glad to see you, you look beautiful.” He is feeling like sh*t and still finds the energy to give me a compliment. What a guy. ❤️❤️🥰🥰

We stayed almost an hour in which he must have dozed off about 15 times. Not able to keep awake.

In the evening, finally some good news. He ate a chocolate mousse after not eating since Thursday morning. Celebrating the small things in life is a must and if it involves chocolate it’s even better.

The doctor said he would be feeling extremely sick for another 6 days until he starts making white blood cells . As the chemo also destroyed many red cells, he received his first blood transfusion in his life. Apparently the blood is also from his stem cell donor. We would love to thank his donor somehow, but the whole procedure is anonymous. No way of knowing who this man is.

Today, it is more of the same but strangely he is getting used to his condition and starts each conversation with a countdown. “Cat, 6 more days and then it gets better.”

I love that he stays positive and soldiers on. And of course, that he doesn’t lose his humor.