Not Kidney you right now, need help with Stage 4!

Update: He passed on 9/22/23 at 7:50am - I have no words as I have lost my best friend and the love of my life. He is no longer suffering nor in pain from this atrocious monster. 

Update: 09/21 - Shands cancelled on us due to his recent decline supposedly. Tried having case manager contact all possible hospitals that would have the resources and tools to help him or any trial options. NO ONE WILL HELP! I understand this is not "curable" but it is treatable however he is now high risk for any cancer treatments. We have been waiting since 9/7, each day that goes by takes a day to make more memories with him or sleep in our bed at our home. Sitting day by day next to him here at the hospital has been the most traumatizing experience to watch him deteriorate each day as he goes through each phase of this aggressive monster that is eating him alive day by day. He now cannot respond, cannot move parts of his body any longer. The pain that my husband feels is unexplainable especially when all he does is moan when he is awake. He does look around to see who is around but as of Tuesday, the new goal is to keep him comfortable until everyone that loves him and is able to come and see him to say goodbye to him. This breaks my heart even updating everyone with this as it has been so hard to realize that I'm going to lose him any day now. Thank you everyone for your continued support as I have told him each day it's amazing to see how much he is loved and how many lives he has touched.

My husband, my best friend, my love has been diagnosed with Stage 4 Bladder Cancer just the other day and it turned our lives into an emotional, mental, and physical struggle which now is preparing us for the upcoming expenses. We can never plan for cancer and all the hardships that comes along with it but I’m willing to do what I can to help my husband get back to living his best life. They say this is not curable but treatable, and I refuse to believe that it’s NOT curable. I have made a list of items that I will be able to afford throughout this and there will be additional items such as doctor visits, treatment plans, medications, etc.. With one income, this will be challenging and difficult to manage, but what is also important is to make sure we do not lose our first home we purchased together. Staying afloat and maintaining the household alone with our teenager is my goal.

He is now physically disabled due to the cancer spreading and it breaks my heart seeing him in pain and suffering through this illness. My husband is a strong man, as he has been tolerating the pain as this disease (without pain meds most of the time because he hates taking them) is aggressively trying to shut him down but he won’t give into it. This all started on July 22, 2023 with a mass on his left kidney surfaced when he was admitted to the ER for abdominal pain and a UTI which lead to MRI and CT scans, then they saw the 6cm mass. We were referred to the mayo clinic up in Jacksonville by an amazing Urologist, Dr. Steven Bossinger who has been amazing with us throughout this process, to get the mass tested. We got as far as setting up a phone interview for 8/16 however they called me on 8/11 and I provided information to them, and they came back with that they didn’t accept my insurance so everything would have to be out of pocket expenses.

Just to schedule a phone call to do a phone pre-screening took 2 weeks, so just that alone is time already lost for my husband. So, I had to take the longer route and see which Nephrologist was within network and accepting new patients and schedule appointments for him. Didn’t find anything until end of September with Dr. H. Girgis and on standby for any cancellations.

It is now August 11th my husband was not looking right, nor sounding right I took him back to the ER because something just was not right with him, his kidneys were failing, and blood levels were not good, had blood in the urine with blood clots. On August 13 he got discharged as his levels were good and kidneys were stable and sent home with a catheter along with pain meds for the pain he was feeling in his lower abdomen and sciatica.

Now it’s August 27th, starting to speak about things that didn’t make sense (confusion), kidney function was low, white blood cells spiked, hemoglobin was low, needed blood transfusion, pain in the “sciatica” is still present and on 11 for his pain level. Same daily medicine through IV to help with pain management and hydration. They performed bone scans and then did a bone biopsy which results can take up to 10 days, so more time lost for my husband once again. Discharged on 9/1 and became less mobile, needed a wheelchair and a walker to get around the house.

Come September 7th we had an appointment with the Oncologist to go over the results that weren’t even ready or uploaded but my husband’s pain was progressing and he was looking pale meaning he was declining again. The Oncologist ordered us to go to the hospital as he can tell his vitals were declining. He is still currently in the hospital trying to get his kidney function stable and increase his mobility along with trying to improve his hydration and nutrition as he has lost about 35 pounds. We are waiting for the insurance to accept the work order to start immunotherapy treatment, we are also waiting to with find out if he will be transferring over to Moffit Cancer Center in Tampa. We just learned today on 9/11 that Moffit will not be able to accept his transfer, however Shands in Gainesville will be able to. All these days going by are days spent less with his family and friends due to insurance delays, back of the house delays, hospital/doctors availability delays, etc..

Update: 09/12 - Shands will be calling us once there is a bed available. Apparently most of these Florida Hospitals have been full lately to do the population growing and other things. Hopefully that call comes through any day now so that he can get transferred up to Gainesville. In the meantime he is being monitored 24/7 at the Hospital and if his kidneys improve to his normal percentile (which is not a normal person's percentile) we can start working on plan B which is IF the rest of his vital levels improve he can get discharged, then we can schedule for his first treatment next week.

My husband is such a great person to be with, as a friend, always trying to do a good deed by helping others out when they are in need, the elderly or buy someone a meal if they are homeless. He is always willing to lend a helping hand. For those that know him well, you know he is a fighter and has a very unique sense of humor that goes with that most genuine laugh he has. He is a great pool player and loves to fish, his favorite holiday is Thanksgiving. My goal is to raise as much as I can so that he cannot miss not one treatment plan and to try and help him gain his appetite back in time for Thanksgiving so that he can enjoy it with our family and friends.

Whatever you help us with will go towards the medical invoices that we receive if the insurance only covers a portion or percentage, and/or house bills as/if needed. I am looking to modify the house to accommodate his new disability with temporary ramps, and a newer wheelchair, if/when it comes down to it.

I thank you ALL so much for taking the time to read our experience and struggle during this unprecedented time for our family. If you do donate to his cause, I will figure out a way to repay you, in my own way.

Thank you in advance,

Karina