A last blog from Shymo written by mom together with the family.
March is on its way. For coming week the agenda is filled with visits. On Sunday the grandpa and grandma from Siem will come. We are making the place cozy: extra cozy with pillows in the tent, cake… it’s like the king and queen will visit. It actually is a bit like that. Grandma’s always bring along all sorts of things, and we are impressed by everything that comes out of grandma’s little bag. Eight hyacinths, a big box of pure chocolates (my favorite kind) and a big piece of chocolate with a sweet text for me!
After the coffee, when grandma already told us a lot, it’s grandpa’s turn. Story’s about the past of course; those are the best. Grandpa told us that he stopped with school when he was thirteen years old, because he had to start working when he was fourteen. “That’s why I still write ‘duck’ with an ‘i,” he says. We are laughing out loud: literally everybody is having a blast! We really enjoyed the company. Some people give you energy, and these are two of them.
Also a lot of friends will visit this week. So much fun, but on Thursday we have to cancel due to the storm. During the night the tent in which the guests stay has been partially destroyed. Bad luck. Also I’m not feeling well this day. In the evening I have quite a fever and I’m being cooled down with cold washcloths. Fortunately the fever drops, and (much later than normally) we go to bed. The next day the Oncologist calls. We wait anxiously, with the hope that I can start with a trial. The Oncologist is working on it, but unfortunately for now no luck.
The next day my best friend Mirte comes over and as a surprise we prepared a gift for her. A while ago there was an article in the newspaper about a grandma that crochets stuffed animals for charity, so we immediately ordered a few! Also two monkeys, one for Mirt and one for me. We both have the same light blue sweater, so the monkeys also got those. Sometimes we need a bit of silliness. Meanwhile dad and Siem fixed the tent and will last for a while. I do sleep a lot currently because the tiredness is unimaginable and also the pain and itch are still there. Which makes me even more tired. The days are long and we hope to have a solution for it anytime soon.
The last week went quite well (although, we think). The ‘wheelchair guy’ comes over to talk us through some changes for my wheelchair. Also some friends are coming over and we receive an enormous amount of flowers, chocolates, cookies and cakes. It makes me so happy. And I really feel special; that others care so much about me. Two girls from my friend group of eleven come up with something fun; a tasty delivery! They’re off to their kitchen and make seven dishes and baked goodies. When they’re done they get in the car and are off to bring it to their friends. How sweet is that?! At 18:15 they’re here in front of the door, smiling and proud. The last one I totally get, because they did an amazing job and I’m really enjoying it. My family is enjoying it as well as they see how happy it makes me feel.
Something really terrible for me, and my family, is that my short term memory is not working. During the period that we were writing about ‘it’s always Tuesday’ we could laugh a bit about it (Shymo’s blog: it’s always Tuesday!). Unfortunately that hasn’t been the case for a while. Before I finish my sandwich in the morning, we already discussed the day multiple times. It makes us all very sad, especially since we know that this is caused by growth of the tumor. Also the enormous amount of medication that I take is part of the cause. So when we’re off to the PMC on Friday we don’t have a lot of good news to mention. The Oncologist confirms that my condition has gotten worse over the last two weeks. It’s always such a weird experience; the moment that your Oncologist says such a thing. It feels like you’re exploding. You would like to slap the table with your hands or scream ordinarily, but we are listening to it calmly; we don’t do anything, we swallow we nod. But from the inside… man, the volcanoes in Italy and Iceland are nothing compared to it.
“Are there still thing that give you joy, Shymo?” Asks the oncologist. The feeling of suffocation gets to my mother. But I say “Yes!, almost every day I have friends or kind people visiting… I enjoy the sun when it’s there, “ I see the others smiling to I’m going on with this: “Amazing food, a pair of cold hands on my face when I’m warm, I got Siem, my family and the dogs…” Yes, the list is quite long and the oncologist is happily surprised. It doesn’t make the problem less complex. I end with: “bring it on with that new pill, sachet of stuff or whatever!” The Oncologist sighs, “I tried to get you in three trials, but no success. They do not want to cooperate. So we go home empty handed. On our way home we put on the Dutch song “utterly stupid” which for some reason cheers us a bit up again. During the weekend we are thinking a lot and we decide to have a go for ourself. We send e-mails to the US where the treatment is and to somebody who says to have made an exact replica. We’d have to pay for it and pick it up by ourselves.
Fortunately we have the foundation “Stichting Help Mo Nu!”. All the donations that we received through the enormous amount of effort from one and a half years ago; the beautiful fundraisers big and small, auctions, events, and many more initiatives, could be worth gold at this moment. With the support of everybody who helped us we have collected an incredible amount and that is something that at times like these gives a warm and safe feeling.
Since Shymo cannot use her arms and hands we have decided to take over the blog writing from her. That way the stories are still share but won’t it take too much energy from Shymo. We are doing our best to write as good and clear as possible but of course we will never be as good as the writings of Shymo.
As a team, a strong collective with all of us, we support Mo. Mo doesn’t give up and neither do we.
April is in sight and we have to confess that it’s not going well. If your legs and arms are not working and are like Shymo suffering from a high paraplegia, you do sometimes think about which other functions could disappear as well. Her short term memory is not functioning well and structuring things, or having a conversation, is frequently not going well. Shymo can’t even write the blogs by herself. Heartbreaking to deal with the fact that our beautiful little girl is sinking further and deeper away from us.
The past week was spend by Ruud, Shymo’s brothers and also her Oncologist (which we heard later), behind the computer. Looking for things that could help Mo… as time is catching up. Lots of coffee, disappointment, hope and disparity, it is an insane week. Everyone of which we have the idea “that person could help us” gets an e-mail. From the US we only get “no,” on the question if Shymo can participate in a trial. Her Oncologist already walked that road, but now we also received a rejection. It remains terribly frustrating to hear that no foreign patients are allowed to participate in a trial.
Wednesday Ruud finally jumps away from his computer, a message from Germany! An Oncologist over there can get his hands on ONC201 and if we can do a videocall this Friday morning at 11:00. Uhhhh yessss, ofcourse!!! Two sleepless nights follow and Friday morning quite early we’re ready. Ruud behind the computer, Mo in bed and mom next to her. At exactly 11:00 the oncologist and his assistant call from Germany. They are nice and considerate people. First the oncologist tells about the whole history of ONC201. It’s a long story, so mom decides to file my nails. After half an hour the Oncologist is ready with his story and Mo’s nails have never been shorter. Never file nails when you’re nervous, is the lesson.
The conversation was very interesting but we just want to hear that one sentence. Ten minutes later, mom whispers in Mo’s ear, “the doctor is talking about you now.” And then finally… drum roll… “I will prescribe ONC201 to your daughter,” “You hear that Mo? You will get ONC201!!!!” The smile that this woman got on her face at that moment was golden. The emotions are high after the conversation. You see: persistence is key. The motto from Mo “I never give up”, is finally being rewarded. They day is filled with paper work, arranging the payment (we are so grateful to all our donors at this moment), all sorts of documentations gets signed and of course we share this amazing news with our own Oncologist.
It’s Saturday and Mo has a reasonable day, the showering goes alright. There is still no progress in the shower unit where Shymo could shower in downstairs so that she doesn’t have to take the journey upstairs. Terrible that the authority of the county of Zaanstad, who should provide help for people with a disability, are taking months to realize something so crucial. It makes us incredibly sad and hurts us deeply to see that the liberty of washing and showered in a way that she deserves is taken away from Mo.
Sunday we reach a new all time low in terms of pain. The headache is terrible and the medication against it doesn’t seem to work. We barely get through the day and in the evening we reach a new low: Mo cannot get to her words. We notice how frustrated she feels. Miserable to see for us, but even worse for Mo. On Monday we reach out to her Oncologist. Her hero, the superman without a cape… well, a white coat counts as well. It’s clear, because of the tumor growth the area swells up even worse, more Prednisone should help. It takes till Tuesday until we see some kind of improvement.
Probably already known to many, but Shymo is the queen of puns. Where she gets them from, no idea! Siem mentions to Mo that he’s going to study upstairs. “Well then, ” says Shymo. “But I can’t skip this one” says Siem unhappy. Mo smiles and says: “I know..!” And then she goes for it: It Siems like a plan, through the trees and can’t Siem the forrest, who isn’t gone is Siem. And she ends in style: Siem you later! Tears roll over our cheeks. Her hero brought her back a bit. This woman does it!
We are waiting for a link in the mail. The link should provide clarity about when ONC201 will be delivered. They don’t send it before the payment is made, this should take twenty-four hours. Today the twenty-four hours have passed but we haven’t received the link yet.
It’s the first of April and a sweet friend is visiting with her sister. They bring a lovely chocolate cake for Mo. After two minutes Mo already wants to lay down, she’s not doing well. So much headache. At 14:30 the physiotherapist arrives. When she’s almost done she’s struck by an insult: an epileptic seizure. The emergency medication that has to be placed inside her cheek is provided. It’s always such an awful thing to see… terrible. We try to reach contact with Mo but she is far gone. When her breathing calmed down she enters a deep sleep. Everybody is shocked. How much more does our child have to endure?
We’re checking the mail again… no link. We have set the goal to start with ONC201 before easter. When we’re busy baking pizza’s Gyl and Char arrive. They’re barely in the tent and watch helplessly how their little sister is having another insult. “The second time today,” tells Siem. The emergency medication inside her cheek comes out again. When Ruud checks her mouth, there’s also still food in it. Getting the food out, and provide the emergency medication as a spray. Ooooh, Mo always finds this so painful… but she’s not responding this time. Besides that Zyara removes the tears from Mo’s cheek in a very loving manner. The Oncologist calls us back quickly. We’re being asked if we need help and we got told that we acted in the right manner. “I’ll call you again tomorrow,” says her Oncologist. Mo falls in a deep sleep, deeper than usual. Everybody tries to eat a bit, but looking at the leftovers we see that it was not a success.
The next morning home care arrives early. The picc line needs some nurturing and the band aid on her arm needs to be replaced. We bring them up to speed, they look worried at us and sigh. “Is there anything we can do for you?” they ask. They are always so kind, but they also feel a bit defeated. They are also powerless. We would like to see this different so badly. Then the Oncologist calls. A couple of things are being discussed due to easter. Fortunately Mo is feeling a lot better today: she’s talking again, eating and makes jokes. The text “happy easter” sounds a bit.. well, far away. Still we do wish it to everyone including ourselves. Now we are only wondering if it will become happy.
During the evening the pharmacy arrives from the PMC with the cassette for the pump. If things turn sour and Mo is not getting out of an insult, then the pump will be connected and will Mo enter a coma. WTF! Piss off!! Get lost, go away! Everybody is looking at each other and while I’m holding that bag in the room. Mo wakes up, sees the bag and asks: “Have Jaap and Suus brought cake again? Ahh, that’s so sweet!” We are looking at each other again and we can’t help but laugh because of this beautiful person. “No sweety this if from the pharmacy,” to which Mo responds: “Also nice!”
No one feels obliged at that moment to explain what’s actually in the bag.
Saturday Mo’s BFF Mirte is coming over. Mo is still terribly tired but also very happy that her friend is always there, through thick and thin, and is coming over for a cup of tea. The bright moments are changing frequently with moments where everything is forgotten. Ten times Mo already asked who is coming while at another moment you can have a very good conversation with her. While Mirte is there Mo has her eyes shut for most of the time. If I ask if she’s asleep she responds with: “I’m hearing everything…!” Good… that’s alright, if it helps to have your eyes shut you should do that. After an hour Mirt is leaving. After the ‘lunch-hour-ritual’ Mo is having a nap. While doing the dishes, I hear she says something. Huh? Did I hear “die”?! I walk towards hear and ask: “what are you saying sweetheart?” “Mama, do you think I’ll die?” she asks.
The flames are under my armpits and I get very nauseous. I’m struggling and looking for the right words. I go sit with her and ask, “do you feel that it maybe could happen?” “I don’t know”, says Mo. “I also don’t know. It could be possible… I mean, it could be the case,” I open the conversation. To which Mo says: “yes, that is the certainty of life.” Meanwhile I am erasing a lot of sentences from my mind and it annoys me that as a mother I’m not good at this. “Well mom I’m not dying anytime soon, do not feel like it.” I give Mo a big hug and soon after she falls asleep again. I’m on my way to the toilet, getting rid of an ocean of tears.
Zyara decides that it’s time to change the mood in the house. Mo is being asked what she would like to eat, because with that amount of Prednisone you’re hungry. On such a short term it’s not easy to find something that can be delivered. Zyara start calling and at Ron’s Gastrobar it’s bingo! The kind employee on the phone says they can make it work. So tonight we’re eating out at home!!!
The food was a great success: Mo had a plate full, it took an hour but she almost finished it. She loved it. After that we watched a silly feelgood movie. Sunday it’s easter, resurrection, new start…
Today the whole family is coming over for dinner in the tent. The weather is alright so we turn on the barbeque. And of course like any other year ASPERAGUS! What a celebration, Mo has been looking forward to it all day. We’re having a lot of fun and even more laughs. We do end a bit earlier than usual because Mo is very tired.
Today, second easter day, Gyl is coming over to help dad in the garden. Siem has to focus on his studies and Zyara as well (the weekend was a bit too much fun). At 10:45 Mo has an epileptic seizure…. Nóóóóó, stop it! Quick emergency medication: she is restless for a moment but then falls asleep. On the ninth of April she has an MRI scan and we are curious how much the tumor has grown since she’s having more epileptic seizures. Hopefully she’ll get radiation treatment again as that always improves her condition. And let that courier hurry with the ONC201. Mo takes a few bites during lunch and goes for another nap. At 15:00 she’s enjoying her glass of lemonade. We become aware that she responds, but is not really talking herself. Do you have pain?, “no,” says Mo “not really.” “do you want anything, can we do anything for you?” Everybody is asking a couple of questions, and tells what they are doing. But then her eyes go wide open. I yell to Ruud. Epileptic seizure? I doubt. Mo falls asleep again. We find this a bit odd. When dinner is ready I say: “Mo are you waking up? Dinner is ready.” Mo sighs. “You can have dinner at a later moment sweetheart!” We’re having dinner and when we’re finished Mo’s breathing changes. Ruud calls the hospital. I also get in touch with home care, who is coming over straight away. I ask Gyl to get his brother and both sisters in law and I call Mo’s BFF. Why am I doing this? I’m expecting the worst. And it seems true, the nightmare becomes real.
At 22:35 in the presence of us all Mo passed away.
And then it became silent, the emptiness, the sadness that punched a hole in our hearts. Disbelief, we’re broken, tired, we don’t want this. It can’t be, it really can’t be possible. We need a lot of love and support and fortunately we are getting an abundance of it.
But Mo, we love you so much 🤍