I would have to say that hearing the word “benign” is probably the most lifting word that I could possibly ever hear!! A year and half ago.. when it all began as what he thought might have been a hernia.. wow, here we are!
Last year Dillan spent the entire summer going through chemo and spent a whole lot of time bed bound. He talked me into taking him to a reptile store and came home with an iguana. Later that night I woke up from a sound sleep with nightmares and ridiculous anxiety. I had just realized what a bad idea bringing a germ infested reptile home was while he was so sick!! Germs, salmonella, cancer.. not a good combination!!! What were we thinking?!?! Obviously we weren’t!! The situation ended up resolving itself when he opened up the terrarium and the 2 inch long, feisty little sucker leaped out, ran across the garage and into the street. One of Dillan’s best friends.. (Paul, u know who u are.. 😆) ran after it and was flailing around in the middle of the street looking like a complete idiot trying to catch this thing that no one could see but him!! Sorry Paul, but I really hope the neighbors saw this go down!! 🤣🤣🤣 He DID catch it!! But.. it ended up getting away again and my iguana dreams were no longer waking me up in the middle of the night! So a memory was created and now, any time any anxiety arises, we call it iguana dreams. Haha!!!
When Dillan got the news today, that EVERYTHING has come back clear.. (and that he just has his routine checks over the the next 2 years to make sure nothing takes off and grows into anything) In Dillan fashion, he says, “see mom.. I told you there was nothing to worry about!” Nope.. no iguana dreams tonight!! ❤️❤️❤️
So over the top happy to hear that what what they were seeing on the liver was just scar tissue. Nothing to be concerned with!! Relief is an understatement!! However.. the thyroid is still unclear (the opposite of what we were expecting) and they will be calling us to set up a biopsy. They said that it is rare for it to go to the thyroid, but they still want to check it anyway. Can’t be too careful! Praying to be done with all of this!!!
Today was our follow up with Dr. Picus after Dillan’s scan. He’s been keeping an eye on a few areas and while he is no longer concerned with the lung, he IS still concerned with the liver. He also wants to double check the thyroid, but isn’t expecting it to be an issue. It’s always better to make sure though. An MRI is being ordered on both the liver and the thyroid, so we will be making 2 trips to Barnes West on the 27th of this month. Scheduling wise, the best they could do was 1 scan at 2:45 and the other at 8:30pm. We have the option to stick around in case of any cancellations, but being 45 minutes away.. we’ll probably just make the 2 trips. If that’s our only issue, then we are doing good! Results shouldn’t take long to come back, so as always.. praying for good news!
The results of his scan brings us more waiting. There is still some concern with the liver and so another scan is ordered for August 12th. We go back for those results on the 19th. There was also some inflammation in the colon which will be looked at again as well. It could just be a side effect of the healing process from his last surgery.
Wow, what a long day! We arrived at Barnes at 6am, surgery was started at 9:30 and at 7:30pm they called us back to let us know that they had finished. Everything went well and they were able to do the surgery laparoscopic which is what we were praying for! He may even be able to come home tomorrow! We are still waiting to go back to see him.
Today was the prescreen for surgery. We’ve gotten quite good at driving to Barnes and navigating that insanely large place! March 20th will be the big day which is right around the corner. They will be removing the tumor as well as the kidney that it’s attached to. Good thing God gave us 2 and that he will be able to function as normal with just 1. Some lymph nodes in the abdomen will come out as well during the same surgery. The plan is to attemp a laparoscopic surgery which would be a smaller incision, shorter hospital stay and quicker recovery. There is a good chance, however, that they will have to open him up. He will have a few weeks of recovery and then another scan is scheduled sometime in May. As for now, spirits are good and he is looking and feeling well. It’s actually pretty obvious how well he’s feeling after watching his self entertainment with the rubber gloves while we wait for the doctors. Seriously, I wish I had footage! 😆
We met with Dr. Picus today regarding Dillan’s ct scan last week. The mass on his kidney is about the size of a softball now. He was hoping that it would have been smaller, but is not recommending any additional chemo therapy. His next appointment is on Feb 13th to consult with Dr. Figenshau who will be doing the surgery to remove the mass as well as the kidney (good thing we have 2 kidneys and living with one will be fine). He will also need surgery on his liver as well as removing some lymph nodes. We don’t know yet if it will all be done in one surgery or not, or when surgery will be scheduled yet, but will know more on the 13th. So the waiting continues, but in the meantime he is back to work, feeling good and is in good spirits. All the pictures on the walls in the office today are now hung upside down so of course he is wondering how long it will take them to notice. Can’t take him anywhere! 😆
Sometimes you have to stop and enjoy what’s right in front of you. Today it is breakfast with my son after having his scan. Next week we schedule his next (and hopefully final) surgery to have the remaining mass on his kidney removed. Patience can be hard when you are anxiously waiting for results. But then after reflecting on the last year as cancer took over his body in a way that brought us to our knees, I thank God for finding strength we never knew we had. For counting blessings we never thought we would count. For being grateful to find joy in the simple things that we take for granted such as having hair that needs cut again. Even if it now has a little bit of wave to it and some red on the chin!😊❤️ For family, friends and even strangers that have supported us in unbelievable ways! I thank God that he sits here in front of me looking so good. As if nothing ever happened. The people in the tables next to us have no idea that in May of last year he was diagnosed with testicular cancer that spread to the liver, kidney, abdomen, lung and thyroid. That in a very short period of time, his tumor on the kidney grew from visibly unnoticeable to the size of a basketball (25 cm.) cutting off circulation to his lower half causing severe swelling and nerve damage that we were told may never return to normal (but did anyway). The people next to us don’t know that not too long ago he was skin and bone. That he spent day after day for 12 long weeks receiving chemo therapy. Sick with mouth sores and living off malt-o-meal because that is about all he could eat. It reminds me to be a little kinder to those around me especially since it was not only the grace of God, but the kindness of others that have carried us through so far. I cannot thank you all enough for the support you have shown! We will find out next week more details regarding his upcoming surgery and from there find out if there is any further treatment needed.
Well, we are moving in the right direction at least. The tumor on his kidney went from 25cm (basketball size) to 12cm. From here, the mass is able to be removed via surgery. Originally it was too large to safety remove without the possibility of bumping into the surrounding organs. I’ve been saying that the cancer cells at the beginning were at a count of 3,992 but was just corrected today. That count was actually 392,000. On his last day of chemo they were down to 77 and as of today, the count is down to 28! Fantastic news, but not quite there yet. The count needs to be 0 before he is able to discontinue treatment. There are suspicious spots still on his lung and thyroid, but it’s normal to see suspicious spots on even a healthy person. So waiting for some follow up on that via future ct scans which will be scheduled later on. We will be scheduling two separate surgeries which are not highly urgent, but need to be scheduled sometime before January. Once the surgeries are done, there is still a possibility of more chemo. All depending on the cancer cells afterward. Again, this is progress!! But looks like a long way to go yet. God has the final say and is the one who is in control. We're just here for the ride. He is looking and feeling good. He says he feels pretty much back to normal, with the exception of some minor weaknesses and slight swelling of his leg at the end of a day. His weight is back to normal and he’s starting to grow some hair back. He is able to do light work and has been getting some part time hours at one of his jobs. It isn’t suggested to do full time labor work just yet, which was news that he didn’t quite want to hear since he is pretty anxious to return to work. Still one step at a time. We are further than we were!
Today Dillan finished the last chemotherapy treatment on his schedule! He will return on October 1st for a scan and then again on October 8th for blood work. We are obviously hoping that on that day they will tell us that he is cancer free and needing no further treatment. He is beyond ready for things to start going back to normal! Because he is not a fan of the attention, he wasn't interested in ringing the bell. He did joke about blowing an air horn on the day his final results come back cancer free!
The biopsy results came back showing that he has a yolk sac tumor, which is testicular. Dr. Figenshau saw that as good news per say, as this type of cancer has a better response to chemo than renal cell carcinoma (which is what he was expecting it to come back as). We will be referred to another Dr. Who specializes in this, but we will still see Dr. Hsieh on the 14th just to keep the ball rolling. Unless we can get into the other Dr. sooner.
This was our initial entry in May and the following updates as we got them, can be read in the journal entries.
Thank you for visiting our site in order to stay updated. We knew we had a big family and a lot of friends, but wow! During times like these, its nicely overwhelming to realize just how many people we are blessed to be supported by! Keeping everyone updated though, has become quite the task! Hopefully this will help us cut down on all the phone calls, text messages, e-mails and all the different facebook pages that have been private so far.
So Dillan went to an appointment on May 14th to check on some stomach pain that he thought may have been a hernia or something. He had noticed some inconsistent pains that he didn't think was anything to worry about. He decided to go have it checked out when it became more noticeable, with some swelling and vomiting. They sent him that day for a CT scan showing a large mass on his kidney (more than double the size of the kidney itself) and spots on his liver. We were referred to Dr. Figenshau at Barnes to remove the kidney. In order to not delay the surgery, they were going to skip the biopsy upfront, since the results would not change the fact that the kidney needed removed. Dillan's case was then presented at a conference and between all of the surgeons and specialists involved, they decided that chemotherapy would be needed upfront to shrink the mass before surgery. Otherwise, due to the size of the mass, the risk of causing damage to the surrounding organs during surgery would be too high. With the change of plans, it was now necessary to do the biopsy upfront in order to determine the treatment plan for chemo. Because there are several different types of cancer, there are also several different types of chemo. As of right now, we are waiting for the next appointment with the oncologist, Dr. Hsieh (pronounced Shay) on June 14th.
That was the super short version of the story which excluded some appointments, numerous phone calls and seemingly countless changes along the way. Dr. Figenshau is obviously unable to give us any of the answers that we are waiting on from Dr. Hsieh, but his guess is that it may be 1-3 months before surgery. In the meantime, we are staying hopeful and positive. As I've told several friends and family, even though he obviously isn't feeling too well and is pretty uncomfortable, he is grabbing the bull by the horns and telling it who's boss! That's who he is and that's what he does! We are going to be done with all of this as soon as possible because he is impatiently ready to get back to work!
As mom, I am doing my best to keep the ball rolling and update as I go. We will post as we have information to give and when we are ready to share. He gets a lot of messages, so just wanted everyone to know that he appreciates the concern and support. Please don't get offended if he does not answer calls or reply right away. We have had so much support so far and so many with questions and asking if we need anything. We will not hesitate to let anyone know if there is something we need. In order to make all of our notifications less overwhelming to keep up with, we ask that you please use this site for comments, questions and support. We originally thought that this would be a quick story that would only take up about 2 weeks of our lives. Since things keep changing, regardless of how long it actually ends up taking.. THIS IS BEATABLE! Anyone that knows him, knows that he is pretty tough and he's going to give it a good kick in the ...!!
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