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About (XB1)VailTaetum

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  1. I've been back with him on the ward since Monday. He laughed during DE Dani's Tuesday stream. Don't remember what it was but he laughed hard. This morning they had to up his pain meds so he could get comfortable and he's been fading in and out of sleep his 9:30 this morning. It is so strange how his day to day can change so dramatically. The doctors say this is normal and he's doing great, all things considered.
  2. Wrapped up chemo yesterday, started his stem cell infusion 10 minutes ago. I was on the ward with him from Saturday through Wednesday. Only 1 caregiver is allowed on the ward with him because of COVID and his sister isn't allowed in the hospital. My kids haven't seen each other face to face in a week. Little V is on a host of immunosuppressive drugs and they'll be watching him like a hawk for rejection. If we're very lucky we'll all be home in 100 days.
  3. I'm on the clean ward with him now, gave the wife a break. He is so small in this giant bed and there so many lines/tubes connecting him to his chemo meds. I've changed hundreds of diapers since becoming a father but now I have to double-glove because of them drugs going into him and coming out. He has to get tons of saline to help flush his kidneys and bladder (one of the drugs is highly toxic to those organs). We're only a few days in and I'm already longing for him to grab my hand, say "Chaiw" and lead me downstairs.
  4. Tomorrow my wife and son check into the hospital. Chemo starts Wednesday. We've been in a new city 3 weeks now, half a country away from home. With COVID going on my daughter and I can't visit my wife and son while they're in the hospital. It's so strange - they will be less than 10 minutes away but we won't be able to hug them. Little V recovered from his surgeries great. We shaved his head a couple days ago to prepare us for them chemo. Tell the people around you/close to you how much you care. Stay safe Tenno.
  5. We've been in Minneapolis since Sunday night with appointments at the hospital every day this week. Little V is currently napping while he gets his ERT in the outpatient clinic. Friday is a long day of surgical procedures. The flight and airports were exceedingly empty but still terrifying. It was a strange experience, more stressful than anything I've done. I hope you're all well.
  6. Tonight is going to be my last stream for a good while as we take our son halfway across country on Sunday to start his treatment plan. The fact that there is a global pandemic going on makes everything about this even more terrifying. It feels like the setup to too many scifi/horror plots. I'll be playing through The Sacrifice tonight while the children are sleeping because I'm a sucker for punishment. I'm on Mixer and my handle is VailTaetum if you want to stop in and put a face to this whole thing. Thank you all for your positive vibes throughout this.
  7. We had our first ERT on Wednesday. It was a long day but we made it. The virus going around is heavy on everyone's mind in the hospital but we made it through. Checked in at 8am and were home by 4:30pm. We're going with the hospital farther away - minimize sedations and get Little V into the isolated unit sooner. There's too much going on in the world right now. Stay safe Tenno.
  8. An update for those following the thread - Our appointment for the developmental pediatrician is on Monday to see how Little V is developing compared to normal 2yos and establish a baseline for his development after ERT starts and the eventual BMT. We have our first ERT scheduled for next Tuesday. It'll be a long day - 5 hours of Little V hooked up to an IV, monitoring the flow, making sure there's no allergic reaction, plus however long set up and check-out take. His sedated CT and MRI scans are scheduled but that isn't until mid April. We're still waiting on general surgery dates for his hernia repair/central line placement. This timeline is all if we stay "local". There's a clinical trial halfway across the country at a university hospital that has treated 200 kids with MPS illnesses, with a focus on MPS 1. If we qualify for the trial we could be starting a variation on BMT (using specially treated cord-blood) as early as the beginning of April. This other hospital has a significantly condensed schedule of tests & exams, getting as many of them into a single week as possible. If we go this route it will mean either my wife or myself will effectively move with Little V to the hospital for between 4-6 months while the tests are done, chemo is administered, the cord-blood is infused/transplanted, recovery begins. Our family will be split in half a country from each other. But Little V will have a shorter treatment time and a shorter recovery time. Long road, but there's hope.
  9. Within the last 24 hours we've had "positive" developments - Last night we learned the exact mutated genes Little V has and had an in-person consultation with the geneticists & the head of the bone marrow team at our hospital of choice today. The initial prognosis of only having a decade-ish max with him has shifted to longer, potentially well into adulthood with some caveats - 1) In order for this to be the case he has to have a BMT (bone marrow transplant) 2) He has to have ERT (enzyme replacement therapy) before and for a period of time after the BMT The BMT should/will protect his brain and neurological function by allowing the enzyme to actually cross the blood/brain barrier - "regular" ERT alone will not do this. The idea is that the ERT paired with the BMT will allow his body to eventually produce what he needs on his own, eventually getting him off ERT altogether. This course of treatment will help halt/slow the progress of the disease in his organs, muscles, brain, everything except his skeleton (with some exceptions). He will most likely need repeated surgeries on his joints, hands, back, hips, neck, etc. in order to try to correct the abnormal formations in his bones. The changes to his organs should allow his current hernias to be repaired and decrease the likelihood of more repeats (he's already had one come back after repair), save his eyes, and other good stuff. Now we're staring at chemo to repress his immune system & prep for the BMT, find a donor for said BMT (if we're very lucky our 4yo daughter will be a match AND also not be a carrier for MPS), there's a sleep study that needs to happen, hernia repairs, potentially ear tubes again, full body CT & MRIs (while sedated), and a very long/intense stay in the hospital post BMT. There are risks and complications associated with BMT & all of that but just use your imagination and you'll land at the Worst Case with that. The post-treatment stay will be a magical minimum of 6 weeks with a potential for 8+ in a special ward for immuno-compromised children (kids with cancer and the like). If we don't do the BMT he will need ERT for the rest of his life and the ERT WILL NOT protect his brain from neurological degradation. There is light at the end of the tunnel but man is it going to be an adventure getting to there.
  10. Still waiting on results to let us know the severity of the diagnosis. Little V has a specialist appointment tomorrow and a developmental pediatrician appointment later in March, and a sleep-study the beginning of April. He will need to get a port for the ERT treatments so that's coming soon too. We won't know about the need for a bone marrow transplant until after we know the severity of his disease. We'll be going to our hospital as a family to meet some of the families in our area in the same boat as us because the last day of February every year is World Rare Disease Day. More information on that can be found here - https://globalgenes.org/world-rare-disease-day/ and here - https://www.rarediseaseday.org/
  11. An update for folks following- The geneticist called about an hour ago with the results of one of the tests and it confirms the initial diagnosis of MPS 1. What we're waiting on now are the results from the other test to tell us how severe of a case Little V has. The geneticist is hopeful that Little V has an attenuated case of MPS 1 which is just a fancy way of saying little to no neurological impairment. The severity of the disease will dictate treatment steps (bone marrow transplant vs not) and pace moving forward.
  12. An update for anybody following the thread - We saw the ENT (Ear, Nose, & Throat) yesterday about potential hearing loss, trying to get a sleep study before April, and see if Tiny Tenno's tonsils need to come out (he got his adenoids out and tubes put in a year ago). 1) His hearing is fine for now, only affected by some fluid in there and we've got drops to help clear that up 2) No dice on the sleep study being sooner yet. Fingers crossed for a cancelation. The sleep study is important to see if he really has sleep apnea so that extra care is taken during any of the surgeries he will eventually need (potentially bone marrow transplant, likely hernia repair, etc.). 3) The tonsils are, for better or worse, not the cause of his breathing problems. It's his airways & such being structurally too small/constricted. The results of the skeletal survey (full body x-rays) came back and they support the initial diagnosis of MPS (Mucopolysaccharidosis). Based on new information from a relative's blood test we're operating under the assumption our son has some form of MPS 1 (Hurler's syndrome). We're still waiting on the results of his blood/gene testing to find out how severe a case he has. A big thank you to everyone here who either reacted or commented. I shared the initial post with my wife last week and it convinced her to share our news/story with the broader internet world. The outpouring of support & love from our IRL friends and family has been tremendous. We're in touch now with a foundation geared towards rare genetic diseases that is local to our area. This all started with you all. Thank you for being awesome.
  13. I didn't/don't take this as coming from a place of insensitivity but from a place of caring and concern and I understand the points you're raising as well as the questions. There's an interview Mandy Patinkin did here - https://www.npr.org/2012/10/05/162383428/mandy-patinkin-25-years-after-the-princess-bride-hes-not-tired-of-that-line And there's parts that really resonate with me now. Though my son is still here for some more time I think the interview at the link begins to kind of explain where I'm coming from. Excerpt here - "Despite the laughter, the story of Inigo and his father struck a nerve with Patinkin, whose own father had died a few years before filming. "I would walk through the maze of the gardens while I was just trying to relax or while they were lighting the scene, and I was talking to my father, who had died not that many years before we made the film, and I always had it in my mind that if I could get the six fingered man, if Inigo could get the six fingered man, then my father, Mandy's father, would come back and be with me."" Thank you for reaching out.
  14. I need to share this somewhere and this community is the only place I can think of. First a history of my time with Warframe - My wife and I got married in the autumn of 2014. My buddies bought me an Xbox One but no games so I found a free-to-play that seemed like something I'd enjoy (clearly Warframe). I played through the first few minutes of the intro/tutorial, told my brother he needed to get the game then didn't touch Warframe again until September 2015, after our daughter was born. Over that intervening year my wife and I got pregnant, bought a house, moved, then welcomed our daughter into the world. I worked from home two days a week to care for our little girl. She was with me when I got back into Warframe, she was with me the first time I completed The Second Dream & my jaw hit the floor. She was with me for The War Within and Chains of Harrow. She's fashion-framed Titania & Rhino and she's modeled kubrows & kavats after her favorite Voltron lions. Our daughter can sing all of Rusty_Fin's "Warframe 80s-Action Theme" (belting out the lines about Space Mom). Our daughter is a Tiny Tenno. In 2017 my wife and I got pregnant again with our son. Our daughter started going to daycare full time and I worked from home two days a week to watch our son. He was with me the first time I played The Sacrifice. He's been with me for tackling the Orb Vallis, for Adventures with Little Duck, for destroying the Exploiter Orb. My little boy has clapped as the Ropalolyst was bugzapped and Hildryn destroyed all in her path during Disruption missions. Our son has been with me zipping around the Plains with Gauss & devouring hordes with Grendel. He's watched as I've felled Liches and been in desperate dogfights in my Railjack. Now the Umbra-as-main part - This last Wednesday, two days ago, we took our two year old son to see a geneticist. They are overwhelming sure that he has a genetic disorder/disease classified under metabolic storage disorders (or lysosomal storage disorders if you prefer [either MPS 1 or MPS 2]). There is no cure, only ways to slow the progression. This...thing...will kill him. I will bury my son. I've started to personify this disease as Ballas in my head. Over the last few hours all I've heard in my head is "Howl all you want, it won't bring him back". TL;DR - I'm a father who will lose his son and I play Warframe.
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