I know it has been awhile, since I have posted anything. I do apologize for that. We have been so busy! Between birthdays, school sign ups, and all the doctor appointments. Well Casey starts kindergarten on August 21st. We meet her teacher on August 14th at 5:00pm est. She is so excited!! Nicole is slowly starting to come out of her shell some, she is so shy and quite. Now she is starting to talk up a storm, but she is still shy at first. Cheston still isn’t walking he is crawling like a mad man, though. He runs like crazy in the walker too. I am doing well, just trying to keep everything under control!
Caleb went to the ER April 29, 2014, for a large lump on his left tricep that started to tingle. They did an MRI the tumor was 11cm long. The ER sent us to another doctor in Sevierville. 4-30-14 Dr Pugh which did nothing but waste our time and say I’m sorry that’s too large I can’t help you at all. And then told us that we need to go to Knoxville, possibly even Vanderbilt (Nashville, TN). Dr Pugh’s office set up an appointment with Dr. Midis in Knoxville, for May 23rd. I called and was able to get Caleb in on May 12th instead of the 23rd. Dr. Midis was great! He told us just by looking and feeling the Tumor what he thought it could be. He then took us to another room and did a needle (core) biopsy. On May 15th around 5:30pm est. Dr Midis, call my cell phone, and told me that they didn’t have enough tissue, but from what they could see they believed it was Liposarcoma. The test were considered inconclusive. So then he told me that Kendra, his nurse, would call me the next day and have the information for the doctors we would need to see at Vanderbilt, in Nashville.
Dr. Midis, was great! He informed us of what they thought it was, and even said we needed to see a specialist. Due to he really isn’t a specialist in that type of tumor. Nd that Caleb would need the best care!!
So we got the call. Caleb was to be in Nashville, TN, at Vanderbilt on May 29th to meet with Dr. Halpern, who specializes in Sarcoma. She spoke with us, took some x-rays, and asked what all have we been told. So I informed her of all the stuff we’ve been dealing with. She stated we were going to just start from the beginning, and that we were in the right place! She said it was a good thing Knoxville, didn’t do surgery, since they didn’t really know what they were dealing with! She is AWESOME!!! So from the x-rays, they were able to tell us that nothing was in Caleb’s lungs, which was amazing news, we were scared it had spread!
Dr Halpern at that time said she wanted to do an open biopsy on June 10th, and MRI and CT scans asap! But since she wasn’t really able to see the MRI scan from Sevierville, it was done poorly she said. We needed to have it done again. They wanted us to stay the night and have the scans the next day, if they could get us in. Well having 3 children at home, that was not possible. We left Vanderbilt feeling good, knowing nothing has spread so far. We had to go back to Vanderbilt on June 2nd for the scans. And then June 10th for the open biopsy. Caleb’s first surgery, first stitches, first everything!! For the age of 30, that’s pretty go I say! Well then again he probably needed them before but is too stubborn to go to a doctor.
On June 10th, 2014, we drove the 4 hours to get to Nashville, and arrived at 4:30 am CST, with 30 minutes to spare. We went into the hospital got all the paperwork started and then shortly after 7am we went up for surgery. That is when the doctor, said she believes its Liposarcoma but won’t know until the results of the biopsy comes back. She said to keep positive. She said that Caleb’s tumor had grown to 13cm long. She said she thinking its a low grade, not very aggressive. But once again not 100% sure until the results of the biopsy comes back!
Well, Caleb wsent back for surgery, I went back down to the waiting room. I called his parents, who were watching our children, and told his mother everything I knew. Once surgery was over, the doctor called down and told me Caleb did great during surgery, and about the caring of the incision. She said I would be able to see Caleb shortly. Then about 20 minutes later, I got another call. It was the recovery room, stating Caleb is/was ready to go and is demanding his clothing! So I rush up stairs. I get there and Caleb’s sleeping again! Which was okay with me since he really didn’t get much sleep the night before since he worked, and drove all night/morning.
Once Caleb was up and ready to go, they took him out to the car and I drove us halfway home. Caleb’s stubborn, he said he wanted to know he could still do it. Plus I don’t think he likes my driving. 🙂
Well we got the results of the open biopsy on June 12th (the day before my birthday).
Caleb has Myxiod Liposarcoma.
It came back having an intermediate (middle) grade.
I wasn’t in too much shock. We already prepared ourselves for this, well the best we could.they couldn’t /wouldn’t tell us what stage it is. So I did my research. According to the TNM system and the Grade.
Caleb has stage 2b, cancer. The tumor is large and deep, it hasn’t spread (that we can tell) to the lymph nodes, and it still localized. The grade being a middle grade. It all adds up to stage 2b, when doing the research.
Also, the CT scan from June 2nd, showed some blockage in Caleb’s lung. So we had to set up another CT Scan, which was done on June 23rd (Dad’s birthday). We went for the scan in Knoxville, at Fort Sanders Regional Medical Center, at 10am EST. later that day around 3pm est. I called Vanderbilt, asking if Caleb’s arm where they injected the dye, should still be hurting and hard, this long after having the IV removed. I had to leave a message. But when they called back around 3:30-4:00pm est. They said they received Caleb’s CT scan results for his lungs. And said to take him back ASAP to FSRMC, the the ER. tell them that Caleb had a ct scan and it found a clot in his lung. So then we reushed back to Knoxville. We arrived around 4:45pm. We sat in a room, in the ER, while the doctors tried to figure out what to do! We made the comment of we should have and could have drove to Nashville, by the time they did anything!
They took Caleb for an ultrasound, on his left arm where the IV was. They found that Caleb had a blood clot, in his arm, along with the one in his lung found by the CT scan, earlier. They gave him a shot of Lovenox, a blood thinner.
So June 23rd, Caleb was admitted to FSRMC, around 11:00pm est. He was put on a heart monitor, was given lots of medication, for the Pulmonary Embolism, Deep Vein Thrombosis, and high blood pressure (which we didn’t know he had until then). In the middle of the night the nurses came running, I mean running in!! They rusehd through the door, running to Caleb! His monitor, showed his heart rate fell to 30. They started asking him all kinds of questions. He was and is fine thank God! They did more test and blood work, before we left on June 24th.
We had several follow up appointments, with what is now his family doctor.
Vanderbilt called and said Caleb would be going to radiation therapy treatments, 30 minutes a day, 5 days a week, for 5 weeks. His first treatment was on July 1st. His last treatment was August 8th.
They said that they wanted to shrink the tumor, kill the Cancer, and make the tumor soft. Well to us the size is the same, its still hard, and we don’t know it if stopped the cancer, yet!
We go back to Vanderbilt, on August 25th through the 27th. For full body scans (MRI and CT) , meet with pre-op, meet with doctor to discuss the scans and all other concerns. Then find out what time surgery is the next day (27th). We are hoping and praying, for good scan results!! For they already have to scrape Caleb’s bone, since the tumor is touching it. They will look to see if it has ROUND CELL in it. If it does and its above a certain percentage then Caleb will have to start chemotherapy, asap!!
So now it is just a waiting game for the next 2 weeks to go by and be over and done with.
I am hoping and praying that he kicks cancers ass!! Excuse my language!
Also, from what I have read, only a little more than 12,000 people will be diagnosed with sarcoma this year, in the US. That includes adults and children, there are over 50 types of sarcoma! About half of the people diagnosed will end up passing of this disease!
Myxiod Liposarcoma, is a subtype of Liposarcoma. Which is the second most common of the Soft Tissue Sarcoma. However, Liposarcoma makes up of only 1%, of ALL adult cancers!
So as this road we are traveling, is long, and at times dark. Please keep your heads up, as we are. Please say a prayer, send happy thoughts/good vibes, for Caleb. May his scans come back with GREAT news that it hasn’t spread, and the cancer is gone!
He is still the only one working, and worked all through his treatments, and all Doctor appointments. I’ve told him I will return to work, however he says no! I should be with our children. So I do, and I am, here for him and our children!