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| View of Downtown Houston from MD Anderson Room |
We flew from Cincinnati Airport to George Bush International Airport in Houston, TX on a 2 hour 29 minute flight. We had to pay more for the direct flight out of Cincinnati, but a one-stop flight was going to take between 5-6 hours to arrive. I knew he could not and did not need to tolerate that long of a flight and/or transfers. Everything went according to plan. We had no problems at any time. Todd had a little pain on the flight, but overall, it was event-free. Once we arrived, we used Uber to get a ride to MD Anderson. I called Dr. Benton on the way to the ER to let him know we would be there soon. This was the plan, to go straight to the ER and have him admitted from there. It took about 40 minutes, but our driver was able to drop us off right at the Emergency Room doors. The ER was somewhat busy and a bit difficult to navigate with the wheelchair and all of our luggage.
It helped that I had all the registration for Todd done before we arrived. At the time I was working on it by phone while Todd was in Soin, it was very frustrating. I remember this process another time I had tried to get an appointment for Todd at MD Anderson in the past, before he got on AG221. First, the doctor sets the appointment. Then, MD Anderson calls to get all of your insurance information. You have to be approved through a "financial clearance" department before your appointment is confirmed. This part is the real pain. There were some discrepancies between what our insurance company was telling us and what MD Anderson had found out. When I called our Anthem Blue Cross and Blue Shield Plan, they said Dr. Benton and MD Anderson were both "in-network." This meant we would not have to pay anything out-of-pocket because we have already met our maximum out-of-pocket expenses for the year. However, MD Anderson's financial clearance department said they had no working relationship with our provider since it was through the Affordable Care Act and not from the State of Texas. They said they would accept our insurance, but only as an "out-of-network" provider. We had to agree that we would pay any difference in the insurance company's maximum payment benefit and what the hospital and other providers charged. So, for example, if the insurance company only allows for $400 for lab work, and MD Anderson charges $600, we would have to pay the difference. This could add up! It basically allows MD Anderson to charge whatever they want for their services, without the insurance company having the power to say that is too much or you were contracted to accept our payment of $400 as a maximum charge. This is where the health insurance system in this country is whack! So, yes MD Anderson is probably one of the best cancer hospitals in America, but you have to pay for the privilege to be a patient there. There is no check and balance system in place when the insurance provider cannot protest that the hospital is charging too much for services. Who knows what our medical bills will be after this is all said and done, but how can anyone put a price on life? I can't. Todd's life is more valuable to me than any amount of money!
Back to the ER. It was late in the day, about 5:30 p.m., so they were anticipating one or two discharges. They got Todd a bed in the hallway until a room opened up. Our nurse was Jesse, and he started getting us settled in. We had to wait for the ER Doctor, Dr. Veils, to come in and evaluate Todd and give some preliminary orders. I provided her with the medical discharge papers and recap written up by Dr. Kim the hospitalist at Soin. This was very helpful as it gave a quick review of Todd's history with the MDS and what happened at Soin. She questioned Todd about his family history, whether there was an any cancer in the family, what he used to do for a living, etc. They put a pick-line in his left arm, since they are not allowed to use his port until it is evaluated. They drew the CBC, did a chest x-ray of the port, performed a EKG, and Dr. Veil had to do an exam of a hemorrhoid that had become enlarged due to all the diuretics they gave Todd at Soin. While this may not seem like a big deal, it is a very dangerous situation. Hemorrhoids can become septic in no time. In fact, it happened to Andy, a man who was next to Todd in the transplant floor at Cleveland Clinic in 2014. He became infected with C-diff (Clostridium difficile), a bacterial infection that causes severe diarrhea, caused from antibiotic use or spread in hospitals from lack of washing hands, etc. People with weakened immune systems, like chemotherapy and cancer patients are more susceptible.(C. difficile, 2016). It quickly caused sepsis and they were unable to use Lasix to drain all the fluids his body started to accumulate when his kidneys began to fail. I am so sorry to say that Andy lost his life as a result. He had a loving family, which I was blessed to get to know while we were there.
They approved his port for use, but kept the pick line in his arm so they could use it for fluids and use the port the for blood draws and transfusions.
After most of these initial tests were done, we were pleased to learn that Todd did not require any transfusions when we arrived. The doctors at Soin only had time to give him one unit of platelets instead of two before we had to leave for our flight; we thought he might need the other unit when we got there. The best part of the ER visit was getting to meet Dr. Benton. He is awesome!!! I love his bedside manner, his intelligence, and his relaxed laid-back personality! He hit us with about 7 or 8 good options. He told us straight out that the AG881 Study was closed here too for now. They have no slots open and won't have them for about 6 weeks. He thought this was a good idea, but not necessarily his first option. His first option is to use a combination therapy of chemotherapy induction to get the cancer into remission. This could take several weeks. There were other trial options on or off protocol that could also be used, but he wanted to see what the genetic panel and the bone marrow results showed first, if he can get them back early in the week. He would like to do the chemotherapy with the intention of doing a second transplant. He wants to go for the "curative" treatment. We explained our reservations to the idea of a second transplant: GVHD, relapse or worse, but he tried to assure us that it was the only known curative treatment available today and he thought Todd would be a good candidate.
We had to stay in the ER Room until about 1:30 a.m. when they finally had a room in the hospital for Todd. Yes, until then, they were full! He was admitted on the lymphoma floor, because there were none available on either of the leukemia floors. It was very comfortable. I had a murphy bed to sleep on and was finally able to get some sleep, even though they continued to do some tests throughout the night. One of the weirdest things that happened is when his nurse asked what medications he was on, and could she see the bottles of medication we brought with us. She said there was no since in paying for more medication, if he already had some. I thought she just wanted to look at the dosage and amounts, but they "confiscated" all his prescription medication! Without asking! Two nurses started recording the type of drug and emptied each bottle counting every pill. We could not figure out what was going on and we were half a sleep. The next thing I know they had packed up all his medication and made him sign a receipt saying they were giving all the medication to the pharmacy to be stored, and that if we wanted it back, we would have to take the receipt to the out-patient pharmacy and pick it up. Really? We had nothing to hide, but wow, were they worried about someone stealing it or patients taking it in addition to what is being prescribed? Is this where the prescription epidemic has led us? I later asked the nurse on the leukemia floor about his procedure. She said they do it so a patient doesn't lose there medications and that we should have been better informed.
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| Todd in his first room on the Lymphoma Floor. |
Friday, September 30, 2016
His early morning CBC showed his hemoglobin at 7.7, which meant he needed 2 units of blood. Platelets were also low, so he needed platelets too. Someone from the Research Department came in and asked Todd to consent to allow some extra blood or marrow samples to be used for research purposes. He has always agreed to this, even at the Cleveland Clinic. Anything we can do to advance the effort for a cure or better treatment, we are all for! Almost all of his tests were done in his room. After 26 bone marrow biopsies, I finally got to watch one take place. They took several slides of aspirate and then then they used a mini hand corkscrew-like tool to extract the small piece of marrow tissue. They also brought a machine into the room to do his echocardiogram. They swabbed his hemorrhoid for testing, took blood for cultures, his type and screen for transfusions, and for the multi-level genetic mutation panel. This one is much more detailed than any other he has ever had in the past. The only test they had to take him out of the room to do was the CT scan of his spleen. I felt bad for him. Just after I ordered his breakfast, they said he couldn't eat because he had to drink the contrast for the scan. He finally ate afterwards.
Speaking of breakfast, the food here has been very good for hospital food. It is very helpful too that they provide a guest menu with prices on it so that I can order too. It is just as reasonable to buy food here than it is going down to the cafeteria. I have more choices and it comes up the same time Todd's food comes. I can eat from $3-$13, depending on how much I want. The only thing I could complain about is the lack of coffee! At the Cleveland Clinic, the family kitchen area had free coffee, hot chocolate, and tea. Here the coffee machine is like a vending machine where you have to pay $1.50 for a small cup of coffee. So, luckily, they have like 4 Starbucks (or at least that is about how many I found in my limited exploration). I have been going down in the morning and getting my $2.11 medium cup of coffee! I prefer this delicious option to vending machine coffee!
I have had a hard time getting a social worker to come up and see me. The sent one to me in the ER, but it was late and I really didn't have my questions ready then. I needed to learn where to find laundry facilities, a place to shower, store food, etc. Someone showed me the family kitchen and wrote down where I could find the hair salon and laundry. The hair salon is for patients only and is run by volunteers. The laundry facility is on another floor of the hospital tower and has pay-for-laundry machines. The price is very reasonable; 75 cents per load on the washer and the dryer. I would likely have to plan on staying there until my laundry was done though. Things here must be different than Ohio hospitals because they all looked at me like I was crazy when I asked where I could shower. It has always been my experience that family members were not allowed to use the patient's bathroom facilities. Here, they are like, you can use his bathroom and shower, duh! At the Cleveland Clinic, they had a family shower area and a free laundry room, but it only had one washer and dryer for the entire floor; sometimes, you had to wait your turn.
Saturday, October 1, 2016
We were hoping to get the preliminary bone marrow biopsy results back. Unfortunately, they were doing a second exam of the results and they were hesitant to release them yet. The doctor thought there must be something questionable in the results, like calling his disease AML or blasts being at 20% or not.
His blood counts this day were: Whites .6; Platelets 12,000; Hemoglobin 7.7. It looks like he has become officially neutropenic with ANCs .29. Blasts in the blood were at 19%. He received 2 units of blood and platelets.
The doctor rounding this day, an associate of Dr. Benton, gave us a horrible shock when he came in guns blazing asking us: Why did we come here? What treatment did we want to do? Did we come only for the AG881?- because that was closed. We answered, well Dr. Benton gave us several options, but we didn't come just for the AG881. He said that they would likely discharge us next week, and we would just be coming in for outpatient visits. What??? This was news to us! I said well he is requiring transfusions every few days, and what about his spleen? He answered, we give transfusions outpatients and I could bring Todd in every Monday, Wednesday, and Thursday. The spleen was still very large, about 28 centimeters, but if they could manage Todd's pain with oral pain medication, etc. He would be fine. He said you know you would have to stay here for at least the first round of treatment. I said yes, we were told that yesterday by Dr. Benton. UGH!
I was in shock! I told him that Dr. Benton hadn't said anything about discharging him so soon. I'm thinking where is this doctor coming from? Why the inquisition? I said well, we need to speak to a social worker right away because we flew in; we have no car; no place to stay and had not planned on needing all this information so soon.
I was so relieved when Dr. Benton came in a few hours later and said that doctor didn't know the situation and wasn't really up to speed on Todd's case, that he had only been able to send him a few emails. He had no intention of releasing Todd to outpatient care. What a relief! I knew that it would be so hard to drag Todd to and from the hospital several days a week in his current condition.
He begin to discuss Todd's options again in earnest. His first inclination was to start Todd on a chemo regimen to get his cancer into remission with the intention of having a second bone marrow transplant. If we are agreeable to this. We told him the first night that we weren't too excited to do the transplant after the first experience with the quick relapse and poor changes of success for a second transplant with resistant disease. He said, he understood our hesitation then, but that now we have 15+ months of additional history of the cancer responding to treatment through the AG221 to consider. This reveals to him more of the "biology" of the disease, that it responded well to a single-agent drug. He feels that he would respond to a multi-agent treatment, which is what the research is all leaning towards now. If, we still don't want to do a second transplant, we could look at therapies or trials available to him. He called these "bridge" therapies because it would likely be another short-term fix to bridge him to the next available treatment in the future. The main problem with going from one bridge therapy to the next is that when it would stop working, he would likely end up relapsing with the cancer progressing rapidly. He also stated that it gets harder to put the disease in remission each time there is a relapse and the remissions would become shorter in duration. It was his opinion that even now, after chemotherapy, the remission would likely only last 6 months or less.
If we went the transplant route, we could have it done here or at the Cleveland Clinic. He said
that Dr. Hamilton would have to look at his list of donor options since they would not use a related donor again. He said that she would likely recommend a full match if one was available, instead of just a half or haplo match, even though there is increasing evidence that these transplants are just as successful as full matches. We asked about which would be best, doing the transplant here versus at the Cleveland Clinic. Did they have different conditioning prior to transplant or different imonosuppression regimens after transplant than Cleveland? He said that was a good question, and that it would be a good idea to bring in a bone marrow transplant doctor here as a second opinion consult to make recommendations.
I told him my main reservation about a second transplant was the unknown mortality rate within the first year or two after transplant. I was also worried about putting him through all the toxicity of the chemo prior to transplant and then just experiencing another relapse. He said he didn't think the morality rate would be high. His only real concern was relapse and GVHD (Graft versus Host Disease). He said though, that even if the transplant wasn't successful, he would still have all the other trial options available. I was surprised, and asked if he had a high grade GVHD, wouldn't that disqualify him? He said, no not usually. But, I do think we would have to wait a certain about of time after transplant to become eligible for some of the studies. However, he wasn't concerned about this.
Other treatment options included a drug that targets the P53 genetic mutation we know he has. Although this mutation can cause additional resistance to treatment, the cells are easier to target because they are marked very specifically. He described these cells like bank robbers with masks on who robbed a bank, but continued to wear the same mask all the time after the robbery. It obviously would make the robber easier to catch. See: https://www.mdanderson.org/research/departments-labs-institutes/departments-divisions/leukemia/clinical-trials.html for a list of trials offered by MD Anderson for MDS and AML.
The other recommendations went by too quickly for me to write down or look into yet. He did say that he contacted the drug company Agios to see if Todd could start the AG881 trial any sooner. He said they may be able to move up the next cohort to 4 weeks instead of 6, but it wasn't certain. This still may not be soon enough for Todd.
Once the genetic mutation panel and bone marrow biopsy results are back, they will have a better opportunity to match treatment options to the specific kind of markers and mutations that Todd has tested positive for, including the JAK2 mutation I discussed in the last post.
The good news is, we have more options here than anywhere else! We have a great doctor and we feel very confident that we are in the right place.
We were moved from the Lymphoma floor to one of the Leukemia Floors right after dinner about 5:45p.m. Todd's Room and address here is as follows:
MD Anderson Cancer Hospital, c/o Todd Cade Room #G1682, 1515 Holcombe Blvd, Houston, TX 77030
Remember not to send or bring any plants or flesh flowers as they are not allowed on the floor.
Sunday, October 2, 2016.
Not much going on today. Todd's counts were a bit better: Whites 1.0; Hemoglobin 9.5, and Platelets 16,000; with ANCs at .45. Sadly, there was 23% blasts in the peripheral blood. No transfusions were needed, however, he started having a nosebleed whenever he stood or sat up, so they went ahead and gave him platelets to help with this.
I will blog more, when I know more. I want to close with special thanks to those who have helped us get here financially (you know who you are). We also want to thank all of the prayer warriors out there lifting us up to our Heavenly Father. Also, special thanks to Dana Willet, for driving 3 hours up and 3 hours back from the Austin area to visit with us. And to my high school friend, Kim Bird for driving 4 hours up and back from the Ft Worth area to bring me some supplies, meet Todd, and lift up our spirits. It takes a special kind of person to drive these long distances to visit!
References:
Mayo Clinic Staff. June 18, 2016. "C. difficile infection." Mayo Clinic. Web. Retrieved from: http://www.mayoclinic.org/diseases-conditions/c-difficile/home/ovc-20202264
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