We are on the 3rd/final week of cycle 2. Next week starts cycle 3 out of 4 (halfway through.. hopefully!) Chemo days can be long. Our longest day so far, we were here 10 hours. It all depends on what chemo drug he is being pumped with and if he is getting pumped with fluids as well. Our short days are anywhere between 1-4 hrs. A week or 2 ago.. (it all runs together) He had a delay in treatment because he had lost 30 lbs of swelling and tumor within a week! We’ll gladly take those kinds of delays (waiting for a call to the Dr. for dosage changes due to weight). When he saw the Dr. last week, the tumor on his kidney (the one that was the size of a basketball) had shrunk to the size of a tennis ball and the swelling in his leg was looking back to normal. They originally said that the swelling could take months to go down with the possibility of it never completely returning to normal. I’d say his progress is fantastic news! Today we have another delay that we are not complaining about. Appetite has been good and he has gained a healthy 14 lbs. He said that looking like skin and bones was just not gonna do! These last 9 weeks have felt like an eternity and understandably, his patience wears thin at times. But overall, his attitude and outlook has kept him (and our family) going strong! How you choose to go through it truly makes an amazing difference! After today, he will have 14 more sessions of chemo over the next 6 weeks. They will then do a scan and determine if any further treatment is needed. There is a 50% chance of him being done or in need of additional treatment (possible surgery, additional chemo or any other treatments to address chemo related issues/side effects). They will not settle for anything less that 100% so we will be doing this thing until that point.
This will be a busy week for us as we started the first week of cycle 2 this morning. As for the most popular question, “how is he feeling?” As expected, some days are better than others. You just kind of, for lack of better words, just learn to embrace all that it is. I’ve never been more proud of the way he is powering through! We didn’t choose any of this, but we are choosing to walk through it with our heads held as high as we can possibly hold them. You all have helped us do that by showing such an incredible amount of support! So much though, that we are not used to all of the notifications that we receive, so we also appreciate your patience as we try to keep up! Please don’t take it personal if we fall behind. For now, we are going to put our phones aside as much as possible and just focus on recovery. If you don’t hear any updates, it’s safe to assume that we are progressing and continuing to move forward! Thank you in advance for respecting our decision to go a little more low key. We are truly grateful! ❤️
Feeling decent so far after chemo. Today is the 3rd and final week of cycle 1. No additional chemo until next Monday which will be the 1st week of cycle 2. He came home from the hospital on the 16th, so everything is being done as outpatient. Some days are better than others and today, so far, is one of the better days. We are actually out catching some fish right now.
2 chemo treatments so far and he is doing good! Last night was the most comfortable he has been so far. He is getting settled and finally on a good pain management system (takes a bit of tweaking sometimes). Up until now, it has been a non-stop whirlwind of commotion, information, appointments and such. Some specialists have come to him, while other appointments he had to be transported to. Getting a bit of a second wind now. He is enjoying some relaxation and trying to figure out what he wants for dinner. He has a touch screen menu to order from (said the food is pretty good!) and games to play on there too. He has recieved a few e-greetings from the Barnes website that got printed out and hand delivered. Brightens the day a bit! 😊 We spent some time realizing how much we appreciate our family and how much of an amazing support system we all are for each other. No matter what.. sickness or even sometimes self inflicted stupidity(😉).. we pick each other up! It’s just what we do! ❤️
He started his first chemo treatment today around 1:00 through his iv. and finished up around 4:00. It will typically take about 3 hours each time. Doing good so far. He is a little fatigued and trying to manage pain. They said that as things start to shrink, he should start getting some relief.
He will do 4 cycles. (1 cycle = 3 weeks) week 1= 5 consecutive days of chemo week 2= 1 day of chemo (June 18th) week 3= 1 day of chemo (June 25th) Then repeat for cycle 2, 3 & 4
Dr. Picus wants him here for his first 5 consecutive days of treatment, so he is expecting to be released to go home sometime on Saturday. From there he will finish outpatient treatments at south county Siteman center.
This is my mile long update from earlier today that I thought I lost. So far we have a lot of different specialists and have been told a lot of different things. Some of this may be repeated information, but here is the rundown all in one place. Dillan’s diagnosis is testicle cancer (more specifically identified as a yolk sac tumor or germ cell tumor). He will be under Dr. Joel Picus (medical oncologist) and his fellow, Dr. Brett Herzog who said this is a very common type of cancer in Dillan’s age group. He will will be treated with the BEP regimen (Bleomycin, Etoposide and Cisplatin) which is the standard of care (In other words, chemo.) in order to shrink the tumors/masses. There is a success rate of 90-95% which is good news! As I mentioned earlier, it is common for it to be widespread in nature. It originated in the testicle and spread to his kidney, liver, intestines and a suspicious spot on the lungs. With the largest mass being 18-19cm on his kidney, they originally thought the kidney was going to have to be removed. There is no longer any plan of removing the kidney, but the testicle will probably still have to go. We are getting ready to be transferred to the CAM building now (Center for Anvanced Medicine) which is where he will start his chemo tomorrow (I don’t know what time yet). He was happy to find out that he will have a large private room with a big tv. His roommate, Brian, has been good company keeping us entertained and encouraged. He has been in here for a few months and is anxious to be released on Wednesday. He hasn’t had too many visitors, but he has a lot of roommates. We wish him luck. Going home for Dillan will depend on how he responds to his first session, so we might be here up to another week. From there he will get to come home between sessions and finish his 12 weeks of chemo as outpatient. I’ll know more later on that schedule. Also.. You can send free e-cards to patients on the Barnes website that they print out and deliver daily. I’ll get a link posted later.
We were just transferred to the CAM building (center for advanced medicine) where Dillan will be starting chemo sometime tomorrow. I had a whole mile long page of an update, but between all of the commotion, I lost it. I’ll post it when I can.
They did not have to place a filter and treated him with a blood thinner instead. The swelling in his leg may take a few months to go down. He did have some clots in his lungs which is primarily why they kept him overnight. I’m thinking he might be camped out here for a bit. It is common for yolk sac tumors to be wide spread in nature. As of right now it is showing up in the kidney, liver, intestines, testicle and possibly the lungs. This type of cancer is very responsive to chemo which is good. It is a possibility that the testicles will have to be removed. He will be going through about 12 weeks of chemo. Over the next few days, he will have to let them know his decision on utilizing a sperm bank. Doing this will delay treatment by another week, adding more risk. This was second hand information, so I am waiting to talk to the Dr. for more information.
Looks like we are staying over night. There is a vein that is being restricted causing some clotting. They are going to put a filter in to catch any clots from traveling to his lungs. The ct scan showed several masses on his kidney, liver and intestines. Chemo, as we already knew, will be needed to shrink them. We are in the ER waiting for a room which could be a few hours. He is hooked up on some pain meds which have him much more comfortable as far as the pain goes. My mom had a bag ready to go which was filled with snacks, magazines and all the stuff I’d be wishing I had. Thanks Mom ❤️
Dillan woke up today with some swelling in his leg and in a lot of pain. My wonderful family pulled it together and got him into the ER at Barnes. I was in the middle of doing onsite wedding hair for a bridal party. Thanks Aunt Mary and Mom for being available! We are just waiting now.
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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