Toms leukemia story starts like this… Two months ago he started feeling a little bit short of breath with simple walks and simple tasks when he was out on the road. He had a regular physical set up for one of the last Monday’s in May, but his doctor had something going on so they had to reschedule for June 18. During the first week of June he had stopped for dinner at a truck stop, got back out on the road and felt like he was going to pass out while he was driving. Knowing his thoughts of somebody possibly poisoning the food wasn’t likely and with the other symptoms of shortness of breath and his lack of energy, he decided to try to get his appointment moved up to Monday the 11th . He went in that Monday for labs and then while seeing the doctor the lab results showed his red and white blood count to be very low. They were so low, his doctor said he needed to come in Tuesday for a blood infusion. I went with him on Tuesday, halfway through the infusion (about two hours) the nurse came in and said that the doctor wanted him to schedule a bone marrow biopsy for Wednesday. We originally scheduled to come back on Friday for results on the blood tests from Tuesday, so after the biopsy the doctor said we should keep that appointment, even though it wasn’t likely for the bone marrow results to be back yet. So Friday we went in with plans of blood results, no big deal. Afterwards we were going to take my mom out to lunch to spend some time with her while she’s visiting from Arizona. When we got to the oncology clinic the very friendly nurse and Dr. we saw Wednesday acted like they were Either really busy or just having a bad day. When we got called back to the room we understood why they weren’t full of energy and friendly like the previous visit. As the doctor had his head down and sitting in his chair he looked up at us and said this isn’t good… You have what is called a AML which is Acute Myeloid Leukemia. OK so first shock was the bone marrow results were back already, and obviously having leukemia wasn’t really on our list of diagnosis. Our first thoughts were to tell the children! Since we couldn’t get them all on a conference call we first called Tricia, with no answer, we tried Emily, and no answer. While we waited for callbacks the doctor decided to check Tom’s vitals so I called Brian to let him know of the diagnosis. When Tricia called back, the doctor spoke to her on the speakerphone. We asked Tricia to pass on the news to Emily and Jonathan because we were supposed to head right to the VA in Minneapolis to get ports started so we could start chemo ASAP. That day two men from our church were supposed to be installing new floors in our living room for us, we weren’t sure if we should cancel or not, we decided to let them install it since we already had the wood in the garage. So the doctor told us to stop by and get some clothes because we wouldn’t be able to leave the hospital for four weeks once we got there. We got home the men were installing the floor, Tom and I packed a small bag, our good friends had stopped by to let the dog out for us. Teddy however had another idea and had escaped while the guys were back-and-forth to the garage. Our friends offered to look for him so we could get back to the hospital, but before we headed out, the guys from church wanted to pray for us. We all held hands and took turns praying, talk about a powerful experience!!!! So we got in the car and Tom was pretty upset about Teddy so we went around the block a couple times just to see if we could see him, but obviously Teddy had bigger plans because he wasn’t anywhere he normally would go. When we got to the VA in Minneapolis we really weren’t sure where we are supposed to go, the doctor just said we weren’t going to be admitted through the emergency room. So at the entrance we went in, there wasn’t anybody by the information desk only a security guard so he gave us two possible clinics to head to. At that point we are just two people in this huge hospital wandering around... first two places weren’t expecting us so they sent us back downstairs to x-ray, because as far as they knew that’s where they put in ports. Well you know how things go, we were still in shock and Tom exhausted because of his illness, trying to get through the hospital wasn’t very pleasant. When we explained our situation in the x-ray department one of the male staff offered to take us downstairs to The clinic where we were supposed to report to. And wouldn’t you know they were closed for the weekend… So off we went to the emergency department... all the staff there were really nice and assured us they would take care of us. The emergency doctor checked him and admitted us. They got Tom a wheelchair and sent us up to 3F, which is oncology. When we got up to the nursing station the receptionist yelled back to the nurse and said, “the patient you were waiting for is here” and nobody responded. We just stood there waiting and she called back again the second time, and a nurse peeked her head out, in a kind of loud and maybe a little screaming voice “he can wait”! At this point we were frustrated of all the running around that we had to do, but we’re just standing there patiently, and I was a little offended by that. As I was explaining my frustration to the nurse that finally put us in a room, she explained that they hadn’t told them that Tom was so low on his counts and needed a private room. They had a lot of patient moving to do to get that room available for us, Not to mention they had to disinfect the whole room before they let us go in. So we were finally in the room, not knowing what was going to go on, getting different messages from all the nurses because they weren’t sure, we all just did the best we could to make it through that first day!
Oh boy I thought this was going to be a quick explanation of Tom’s story and I have to get to the hospital now ( it’s now Sunday after a week of chemo) so I will continue later on ...
Well, we have had some seriously tough times these past 3 weeks! Tom ended up with a terrible blood infection after being admitted for his fluid retaining legs. The infection, along with the issues with his liver, too many water pills, and the high prednisone dose caused Tom's kidneys to start failing also. For two days he was in a delusional state, believing he had already passed, and "the meds were what killed him". He refused to take meds one day because of that, I believe it was God allowing that situation, to get his meds reevaluated and straightened out. He is back to "Tommyville" for the most part mentally, but physically he has had a huge set back. They plan to try to get him in a bed for rehab, in-house, when he is medically stable to move downstairs at the VA. The doctors think that will be 3 more weeks. As much as we all hear about the hospital food (every hospital), that is one of my biggest concerns! Tom hasn't been as extremely picky as he used to be, but they have been continuously sending him items he crosses out as a "I will never eat that" items and ignore his choices. He has already had 2 nurses call the dietitian about this situation. So, since eating is part of his getting stronger goal, I have a huge prayer list if you are willing to take some knee-time! 1. Dietician/staff to deliver the menu items he actually circles on the menu. 2. Food delivered right when get on the floor. 3. Tom be so hungry he will eat it even if not perfect. 4. Tom continue to drink the Ensures they bring with meals. 5. PT continues daily with nurses getting him out of bed as many times as he will tolerate. (3 weeks in bed and high prednisone has stolen all of his muscle tone) 6. The kidney and liver numbers keep going in the right direction. 7. His rehab takes less than the allotted 21 days to avoid co-pays. 8. I can continue to work. 9. I continue to seek help for my emotional/mental health. 10. I keep on my physical attempt to get stronger to assist Tom when he finally gets home.
I really appreciate all of the prayers, I dont know why it's so hard to pray for ourselves sometimes...so if you need anything, please let us know so we can take a turn and say some prayers for you!!!😍 Thank you all so so much for your wonderful support! Visits, prayer, food, finances, texts, calls, messages, Christmas cards, the neighbor has also been taking care of my driveway when I havent🤩! We are so blessed to have such a wonderful Circle of friends, family and neighbors! Love ya's, Dina❤