{"id":161,"date":"2024-10-10T19:36:12","date_gmt":"2024-10-10T19:36:12","guid":{"rendered":"https:\/\/cota.org\/cotaforwillpower\/?p=161"},"modified":"2024-10-10T19:36:14","modified_gmt":"2024-10-10T19:36:14","slug":"no-news-is","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforwillpower\/2024\/10\/10\/no-news-is\/","title":{"rendered":"No News Is…..?"},"content":{"rendered":"\n

Alright well, I don\u2019t think the English language has the right words to convey my sincere apologies to everyone who is following along with our story here only to have a gap of almost five months in our narrative.\u00a0<\/p>\n\n\n\n

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We have alot of pictures from Will’s physical therapy visits over the last few months. There are two things that make physical therapy tolerable for Will. The first is an amazing Physical Therapist who Will instantly clicked with and makes all the difference in the world. The second is the world’s best therapy dog Checkers, seen above, who helps kids out with their PT and has been an amazing support\/companion during this process. From chasing balls, to keeping Will going on walks and even playing games like Tic Tac Toe, she has been there every step of the way with Will. <\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

No excuses but the reality is that most of the updates I have written over the last two years were done while sitting around a hospital waiting with nothing better to do.\u00a0 In the last five months the amount of time we have spent sitting around a hospital has significantly decreased and in exchange the times where I sit and think about what I want to convey in the blog have decreased.\u00a0 At first, I missed updating in June and I thought, man I really need to update the blog.\u00a0 Then summer flew by, and I thought, man I really need to update the blog.\u00a0 Now its October and I am thinking okay, enough is enough its time to update the blog so you all know Will is still alive (and doing well I might add.\u00a0 No news is good news in this situation!)<\/p>\n\n\n\n

The other part is that there hasn\u2019t been much in the way of earthshattering progress or complications to mention.\u00a0 Things have been steadily improving at a very slow pace.\u00a0 In some ways it feels like we are still where we were back in May but then I stop and look at the decrease in hospital appointments, pills, infusions, etc\u2026\u00a0\u00a0 More on that in a minute.\u00a0<\/p>\n\n\n\n

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While his immune system is still pretty much nonexistent we have been able to slowly start sneaking Will out in places where we can control the level of interaction with others, what he touches and keep most of the interaction to just our family. One development we have had over the last year is Will’s favorite food is now steak. We were able to get the four of us out to the Cheesecake Factory back in August and Will ordered the $45 ribeye. A bit of sticker shock from the price of kids meals he was eating last time we were here! <\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

On top of that, I\u2019m happy to report that while still very much in the middle of recovery, life has somewhat gone back to something resembling normalcy for us.  Will and Kim started back up the school year on time in August and while having some ground to catch up, Will has embraced what we are calling grade 6.5 to catch up on the last year at his pace.  Homeschooling has been tremendously beneficial for us throughout this process.  We must keep reminding people that Will\u2019s goal isn\u2019t to go back to school.  We were doing homeschooling long before with Will for several reasons.  The transplant wasn\u2019t one of those, but it did allow us for flexibility in the extreme situations we have been through and go at the pace he is comfortable with.  It helps that he is insanely smart and advanced for his age anyway \ud83d\ude0a<\/p>\n\n\n\n

The overall report on his health is that he is doing great but before I go into the details, I wanted to share a couple of the highlights and milestones we have covered during the last few months.\u00a0<\/p>\n\n\n\n

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Happy 12th Birthday to Will! He is wearing the party hat from his birthday cake as a joke. More on that in a minute…<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

First off was Wills birthday back at the end of June which coincidently I attempted to write a blog post for at least a half dozen times but could never make much progress.  I guess you could call it writer\u2019s block. <\/p>\n\n\n\n

Will turned 12 at the end of June and while very limited on what he could do without a functioning immune system, we still managed to have a good time at home and give him a few memorable gifts including his doctors allowing him to skip about 75% of the pills he had to take for his birthday!<\/p>\n\n\n\n

One of my favorite gifts he received was a small poster that he asked for and is another one of those things that sums up Will better than I can.\u00a0 Will\u2019s favorite subject in school is science and more specifically chemistry.\u00a0 \u00a0For his birthday Will asked for a poster of the Chemical Structure Diagram of the Serotonin molecule, also known as the Lewis structure of Serotonin for all my science fans out there!\u00a0 \u00a0<\/p>\n\n\n\n

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Serotonin is of course the chemical messenger that plays a key role in the human body\u2019s regulation of many activities including mood, memory and behavior.\u00a0 It\u2019s commonly linked to happiness\/depression but it serves many functions including regulating sleep, motor control, digestion\/vomiting, bone health and (interestingly enough in our situation) helping your blood clot which is kind of how we ended up in this whole process in the first place!\u00a0 So why did Will want a poster of Serotonin?\u00a0 Because he\u2019s Will, he\u2019s awesome and he thought a representation of happiness on his wall in a scientific way would help him be happy!\u00a0 Speaks to the way his mind works and the depths of his emotional maturity.\u00a0<\/p>\n\n\n\n

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Awesome birthday cake from some awesome people, Thanks @Thecakeavenger and Icing Smiles! (Icingsmiles.org<\/a><\/em><\/strong>)<\/figcaption><\/figure>\n\n\n\n

We ended his 12th<\/sup> birthday with the literal icing on the cake.\u00a0 There is a nonprofit organization called icing smiles (icingsmiles.org) who are \u201cbaking\u201d a difference by delivering dream cakes at no charge to kids impacted by critical illness.\u00a0 Our awesome social worker at Phoenix Children\u2019s put us in touch with them and in return we were able to work with an awesome local cake decorator @thecakeavenger who donated his time and talent, took Will\u2019s love for cats and the color blue, and whipped up this masterpiece.\u00a0 Only one issue with it.\u00a0 Will loves cats so much he refused to eat the cat part and didn’t want us to cut it! He enjoyed the cake part though!\u00a0 The cake tasted as good as its looks, and I can\u2019t stress enough what an awesome idea this is to do something to put a smile on a kid\u2019s face who is going through some of the worst things imaginable.\u00a0 It\u2019s one of those things you wouldn’t think of but these are the types of things these kids need to help drive away the grind of lengthy treatment plans and slow recoveries.\u00a0 Two thumbs way up for Icing Smiles, @TheCakeAvenger and the whole process.\u00a0<\/p>\n\n\n\n

The summer was mostly uneventful, only marked by the decreasing number of times we ended up in the hospital.\u00a0 We did have one little scare with his central line that one day randomly wouldn\u2019t give up any blood, but we got through that mostly unscathed, and the summer progressed up until September where Will hit a major milestone.\u00a0<\/p>\n\n\n\n

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One year BMT survivor coin! Our doctor said she wished she could give giant ones for parents too but that’s not in the budget. Hey my reward is a healthy son!<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

A couple of weeks ago we were able to go in for his one-year survivor checkup!  Not a fan of the term \u201csurvivor checkup\u201d but he has been through a lot so who am I to judge.  While it was a long, draining and somewhat stressful day, we met with several different doctors who all reviewed Will and gave him his status update a year into this process.  I can\u2019t say they gave him a clean bill of health, but everything is going how they would want it to so it was about the best we can hope for.  They also gave us some initial insights into what the next year+ may look like and things to watch out for (for example, apparently, he will be highly susceptible to skin cancer now so its very important he always wears sunscreen when he goes out now.  Thankfully he doesn\u2019t like to go out!)<\/p>\n\n\n\n

It was a great visit and while we are by no means finished with this process, he has come a long way.  His doctors are very pleased with his progress despite some of the challenging complications he went through.   He seems to be responding well to everything and is in the process of being removed from more medications. <\/p>\n\n\n\n

The doctors also allowed us to take him off his overnight fluids for a couple of weeks to see how his body does.  I feel like I have mentioned this, but Will has remained on a 10-hour daily dose of IV fluids with Phosphorus and Magnesium this whole time.  So, every night at nine we would go through the ritual of hooking him up to his IV pump\/Fluids and every morning between six and seven (it always struck me funny at how inconsistent it was!) we would unhook him, flush his lines, etc\u2026  It\u2019s been the routine and short of a two-day period for our anniversary where Kim\u2019s sister came down to take over and allow us to get away for a couple of days it\u2019s been our life for the last year. <\/p>\n\n\n\n

Thankfully Will has responded well to that trial period and will no longer need fluids.\u00a0 On top of that he is no longer showing any markers for the TMA complication, so we were able to stop his Eculizumab treatments. \u00a0\u00a0These two things are leading to another major milestone as yesterday the doctors submitted the order to have his central line removed!\u00a0 <\/p>\n\n\n\n

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Picture of Will with his awesome Physical Therapist, Mari, doing one of their favorite activities, playing a game (This fishing game and Don’t Break The Ice were favorites) while injecting a balancing or strengthening exercise. PT has been amazing for Will. When I last posted in May he was in a wheelchair, now he is walking and sometimes hard to keep up with. He still has a ways to go to improve stamina and some of his flexibility but its been a remarkable improvement. <\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

Through it all the pills have been decreasing.\u00a0 I think he takes twelve pills in the morning now, two in the afternoon and seven at night.\u00a0 That is probably about half of where he was at his highest point and most of the time he takes them without too much fuss now.\u00a0 While we are removing his central line, he will still need occasional infusion treatments over the fall\/winter months so he will have to be accessed via IV for those, but they should be less than monthly.\u00a0 While he hates pokes and IV\u2019s and still gets himself a little worked up about them, he\u2019s doing great with it (if his little veins will just hold up that is!) and is happy to go through that if it means taking the central line out.\u00a0 As soon as he heals up and is given the green light we will have to find him somewhere to swim as I suspect it will be a little too cold in our non heated pool but who knows, we are still hitting 105+ in Phoenix right now. <\/p>\n\n\n\n

Things are so good that last week we even had our first week in well over a year that we didn\u2019t make any trips into the hospital, and we likely wrapped up his physical therapy this week.\u00a0 \u00a0<\/p>\n\n\n\n

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Will wasn’t the only one who had a birthday this summer, Checkers the therapy dog also had her 6th birthday and had a big party on the patio at the Phoenix Children’s hospital where she kindly wore a mermaid costume and birthday tiara for photo ops with the kids. If you look closely you can see she is also wearing a bracelet. Did I mention this dog is awesome? She doesn’t do it alone of course, her owner\/trainer is there every step of the way. Its an amazing balance of love, tenacity, patience and work from both sides and in the end the kids benefit! She’s the best!<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

So, are we all done?\u00a0 No, but we are down to one visit every other week for labs and check ups with his doctors combined with the occasional specialist visit mixed in for good measure.\u00a0 They seem to be reducing a pill or two every couple of weeks. His immune system is still mostly nonexistent but starting to show signs of life.\u00a0 So, while we are still being very cautious, he did receive approval from his doctor to go do an escape room which he has been dying to do for months.\u00a0 We must still avoid crowds, not let him touch too much, wear masks and all that good stuff.\u00a0 Basically just use common sense, but each day\/week\/month things seem to get back to normal.\u00a0<\/p>\n\n\n\n

And that is perhaps the best\/worst part of all of it.\u00a0 I\u2019m not sure we even know how to be normal anymore.\u00a0 I\u2019ll speak for myself but I\u2019m honestly having a hard time with the adjustment, and I don\u2019t know why.\u00a0 It\u2019s a great thing, don\u2019t get me wrong, but I feel like I don\u2019t know what to do with myself when every minute of every day isn\u2019t focused on his care.\u00a0 I didn\u2019t expect it to be a hard adjustment but oddly it is.\u00a0 It\u2019s almost like my mind needs some kind of trauma to function and is searching for one.\u00a0 One of those good problems to have though and we\u2019ll take it.<\/p>\n\n\n\n

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Taking a walk with Checkers at PT. Early on Will would start by walking 50 feet, than 150, then all over the hospital!<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

Hard to believe that it\u2019s been a year since the transplant.\u00a0 It\u2019s hard to believe we went through any of it if I am being honest.\u00a0 We are creeping up on the two-year anniversary of when Kim first noticed the petechiae in his eyes and they ran the blood tests to reveal his platelets were critically low.<\/p>\n\n\n\n

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Hard to believe its already been a whole year since the transplant! This was the scene a year ago when the donor cells were being administered that would save his life.<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

As part of all of Will\u2019s improvements, I was able to start going out and traveling for work again and a couple of weeks ago that meant attending our yearly customer conference.\u00a0 More importantly, it meant getting to see many of my coworkers and my team for the first time in almost two years (and my awesome brother Dave who works at the same company. Now conferences double as a family reunion since we don’t see each other often!)\u00a0<\/p>\n\n\n\n

During this years conference we were having dinner one night and the conversation turned to pets. I went searching through my phone for a picture of our dog Roxy to share with everyone.\u00a0 I unfortunately couldn\u2019t find one (although I did have dozens of pictures of my cats, please don\u2019t tell the dog she already feels unloved!) but I did stumble upon this picture that I shared last year at this time.\u00a0<\/p>\n\n\n\n

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Can honestly say I’m lucky to work with such a great group of caring, selfless people!<\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

A year ago, during this conference we were in the hospital. Will was getting his first doses of chemo in preparation for his transplant.\u00a0 His body was starting to go downhill as a result and as parents we are sitting there watching our child literally go through hell with no way to help.\u00a0 It was probably one of my lowest points.\u00a0 That was when my boss texted me the picture of my team and coworkers all sporting the \u201cWhere there’s a Will there’s a way” t-shirts that I coincidentally was also wearing at the hospital.\u00a0 It immediately boosted our spirits.\u00a0 That\u2019s just one example of countless where we have been lifted and supported by all of the amazing people in our lives.\u00a0 \u00a0\u00a0<\/p>\n\n\n\n

If you are reading this, I want to give you a heartfelt thank you.\u00a0 Many I will never actually be able to tell directly including the dozens upon dozens of anonymous donors.\u00a0 People keep telling us that we are amazing.\u00a0 I don\u2019t take compliments well but fine if you want to say we are amazing I say we are amazing because of all of you out there reading this and supporting us.\u00a0 We don\u2019t do any of this alone.\u00a0 There has been a cast of thousands supporting us through this.\u00a0<\/p>\n\n\n\n

The only real amazing one here is Will, the expert caregivers at Phoenix Children\u2019s and all the amazing kids who are going through challenges just like him.\u00a0 My view of the world has been forever altered through everything we have been through and despite the immense heartache, grief, anger, frustration, etc\u2026 that has come along with it, I don\u2019t think I could have it any other way.\u00a0<\/p>\n\n\n\n

It\u2019s too early for the moral of the story, but as I look at Will and what he had to go through I\u2019m impressed with the idea that if he can stay positive and indirectly spread that positivity through what he has gone through, then what excuse do the rest of us have?\u00a0 We should all be able to spread positivity regardless of the madness that is going on around us.\u00a0 \u00a0\u00a0\u00a0\u00a0<\/p>\n\n\n\n

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I wanted to include a recent pic of Will but I appear to be falling back into my bad habit of not taking pictures. We did take this one yesterday at what was likely to be his last physical therapy appointment. Sadly Checkers no longer works Wednesdays so Will greatly missed her but a very eager Golden Retriever named Tally came to the rescue. Will is holding his hands like that because Tally ran in, jumped up and loved Will, slobber and all, and he is waiting for a towel to wipe it off his hands. I do want to call out Will’s hair which has taken on a life of its own and is practically its own entity at this point. He used to have completely straight hair and now its anything but in all the best ways. He is adamantly against us cutting it at the moment. He’s in beast mode I guess! Also, while its not always easy to tell, his swelling from the steroids is still present but has come way, way down from its peak earlier in the year. You can tell from comparing with the pictures from his birthday and that wasn’t the peak of the swelling. <\/em><\/strong><\/figcaption><\/figure>\n\n\n\n

We love you all, more than you will ever know, and thank you deeply for all you have done and continue to do for us.  I only hope when the shoe is on the other foot that I can help you as you have helped us. <\/p>\n\n\n\n

Sorry, that sounded like a goodbye, but we are far from done.\u00a0 I\u2019m sure the updates will continue to be sparse as life is hopefully uneventful, but I\u2019ll challenge myself to update the blog a little more frequently going forward.\u00a0 I\u2019m sure they will be boring updates, but we are probably overdue for a little boring in our lives!<\/p>\n\n\n\n

Turns out we gon\u2019 be alright!<\/p>\n","protected":false},"excerpt":{"rendered":"

Alright well, I don\u2019t think the English language has the right words to convey my sincere apologies to everyone who is following along with our story here only to have a gap of almost five months in our narrative.\u00a0 No excuses but the reality is that most of the updates I have written over the […]<\/p>\n","protected":false},"author":934,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-161","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/posts\/161","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/users\/934"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/comments?post=161"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/posts\/161\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforwillpower\/wp-json\/wp\/v2\/media?parent=161"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}