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| Cade Family Picture at Soin Medical Center before flight to MD Anderson on Thursday, September 29, 2016 |
Todd was admitted to Soin Medical Center on Sunday morning, September 25, 2016 with pain in his left side. On the Friday before being admitted, Todd was starting to feel a slight pain in his left side under his ribs and on Saturday about 5:30 a.m. he woke up with a terrible pain in his back between his shoulder blades and left shoulder. He was not running a fever, but had to take some pain medicine to be able to go back to sleep.
All through the day, his pain in his left side was gradually increasing. He had to take more pain medicine throughout the day. He was tired, and was likely in need of a transfusion too. I ran errands and mowed the grass, until the evening. I spent time online looking for clues as to what could be wrong. We had a pretty good idea that it was either his spleen, lungs, or pleurisy, according to his symptoms. He was too tired to go to the emergency room that night, so I told him to try to sleep and we would go first thing in the morning
Sunday morning, about 8:15, I had a call into his local oncologist. She agreed that we needed to get him to the emergency room. She called ahead to let them know he was coming. We were dressed, out the door, and in the emergency room in less than 15 minutes after hanging up the phone. I knew he was in significant pain since he wasn't arguing with me about going.
When we arrived to the ER, they got us right into an room and did a CT scan of his lungs and abdomen and a CBC. He counts were low: Platelets 9,000; Whites at .9; and hemoglobin 7.9. They found the source of the pain immediately. His spleen was about 27 centimeters in size! The most recent scan performed of his abdomen was from 2015, where it was only about 17 centimeters in size then. This condition is called Splenomegaly, and it is not common for MDS patients at all. In fact, it is very rare for it to occur. But it can occur with Leukemia according to a Healthline article written by Carmela Wint and edited by MD George Krucik.
According to an article written by Radhakrishnan on the Medscape website,
A spleen weight of 400-500 g indicates splenomegaly, while a weight of more than 1000 g is labelled massive splenomegaly. Poulin et al defined splenomegaly as moderate if the largest dimension is 11-20 cm, and severe if the largest dimension is greater than 20 cm. (Poulin as quoted in Radhakrishnan, 2016).They thought the saw some possible "infarctions" in the spleen, where the spleen had suffered some damage, and these infarctions can cause significant pain.
Splenic infarction is a condition in which oxygen supply to the spleen is interrupted, leading to partial or complete infarction (tissue death due to oxygen shortage) in the organ. Splenic infarction occurs when the splenic artery or one of its branches are occluded, for example by a blood clot. (Wikipedia. 2016).
His heart rate and blood pressure were also high. They gave him morpheme for the pain at first, but it didn't help at all. Next, they tried Dilaudid, which I had never heard of before. Apparently it is one of the strongest pain medicines available and they gave it to him through his IV. This just put a dent in his pain, but did not completely help.
The admitted him to a regular hospital room by 4:00 p.m. It was frustrating though because they didn't get started on his transfusions until about 4:45 that evening. They started with the platelets, which normally takes about 30 minutes to transfuse, but because our nurse hadn't really transfused platelets before and the floor's protocol for transfusions, they ran the transfusions extraordinarily slow. She didn't even finish transfusing the whole bag, because she kept underestimating how long it would take to run them, so we had to insist that she finish the bag and not let the platelets go to waste. I get concerned when platelets drop below 10,000 because there is more of a risk for a brain hemorrhage. To make a long story short, he usually can get 2 units of blood and one unit of platelets transfused in about 6 hours. It took 12 hours for them to do it. This meant the nurse was unable to collect the next required CBC and platelet function draw until after the transfusion. The lab delivered the tubes for collection at 7:00 p.m. that evening, but they didn't get drawn until 8:00 a.m. the next morning. I was so furious, I had to complain.
They continued to give Todd the Dilaudid through his IV as allowed. The doctor later added in Fentanyl, a muscle relaxer which seemed to help. Most of Todd's pain occurred when he tried to take a deep breath and when he moved a certain way. He had to lay on his back to minimize pain. At first, we were concerned with how they were going to treat the splenomegaly. Would they have to take the spleen out? Could they take it out? His local oncologist also not to do anything with it at a community hospital; instead she advocated talking to Dr. Hamilton in Cleveland to get her input and then maybe have him transferred to Cleveland. Since, it was the weekend, we had to wait until Monday for doctors to get in touch with each other. I sent a message to Dr. Hamilton via MyChart and an Email to Sam, his trial nurse for her to see when she came in on Monday.
I called Sam, the trial nurse at Cleveland and Dr. Hamilton at 8:30 Monday morning to let them Todd had been admitted and to discuss a game plan. I finally heard from Dr. Hamilton. She wanted to consult with Dr. Stein in New York to see if he had any patients who developed splenomegaly after getting off the AG221 trial drug. She was puzzled too why this had happened since she agreed it wasn't consistent with MDS. We waited all day to hear from Dr. Hamilton, who had called Dr. Stein's office and was waiting to hear back from him. It was also her purpose to plead our case of getting the AG881 trial drug open slot. Before she could call us, I had heard from Emily, Dr. Stein's Research Assistant about 4:08 p.m. on September 26, 2016. I missed the call, but she left a voicemail message, saying "unfortunately" the drug company was not able to offer Todd a slot in the AG881 drug trial at Memorial Sloan Kettering.
I wasn't too upset. I figured if it was meant to be, he would have got the spot. This just meant we needed to discuss other treatment options. Dr. Hamilton wanted to check out the other trial locations, including contacting her colleagues at the James at Ohio State and others.
I had been doing some research about the spleen, because I really didn't know much about it. I kept getting conflicting opinions whether it could or could not go down in size. I knew he couldn't continue to go on with his spleen this large, especially since it was causing so much pain. The first treatment is to treat what is causing the enlargement.
The most helpful way to explain the spleen function was explained to me like this. The spleen acts like a large lymph node. When it is fighting off infection or working too hard, it gets enlarged, just like when you get sick and your lymph nodes in your neck or under your arm get enlarged. The best way to get the spleen to shrink in size, is to treat the underlying cause. In Todd's case, the spleen is trying to make blood cells that the bone marrow can't make. It also filters out and keeps bad or diseased blood cells. This is why it harbors platelets. We had noticed he was starting to need platelet transfusions, but didn't realize it could be the spleen was taking them out. Therefore, the best treatment for returning Todd's spleen back to a smaller size, is treating the cancer, which in turn will help the bone marrow produce healthy cells and relieve the spleen of over-working. This is also what has been causing that mysterious cough that Todd had since June. The enlarged spleen is likely pressing on the diaphragm causing it to spasm producing hiccups and coughs! I knew that something was causing his cough! Why did no one think of this! It was also contributing to the lack of appetite and weight loss. As the spleen was enlarging, it pushes into the stomach too, leaving little room for food or causes a "full" feeling after only a small amount of food.
A surgeon was called in, because another option is a Splenectomy or removing the spleen. This was not a good idea since his platelets made surgery way too dangerous and the spleen offers a second line of immunity that Todd needs.
I saw that some enlarged spleens had been treated successfully with radiation to the area, but Doctor Hamilton was not in favor of this option as it would kill good cells too. Dr. Laubenthal, his local oncologist also brought up the possibility of using a special drug called Jakafi or Jackavi (brand names) or Ruxolitinib to shrink the spleen. However, this medication, we learned is very hard to obtain and only works if the patient has a Jak2 mutation (The Story of Jak2, 2016). This drug is only prescribed for use with patients with Myelofibrosis (scaring of bone marrow) or Myeloproliferative diseases (when the bone marrow creates too many blood cells), both which can cause splenomegaly. Although Dr. Hamilton considered that Todd may have developed Myelofibrosis, she rather believed it was just Todd's disease progressing.
So, the strategy for dealing with the spleen was to manage the pain until treatment for his disease could begin.
Also newly developed, Todd's CBCs began to detect 10-20% Blast cells in the peripheral blood (blood stream). Usually, this is not a good sign. It usually means the disease is progressing and blasts are spilling out into the blood stream from the marrow. The numbers of peripheral blast cells seemed to be increasing daily. We both had a good hunch that Todd's disease was progressing to AML and felt we should probably seek treatment immediately, which meant going back to the Cleveland Clinic. Just when we had made up our mind to do this, Dr. Hamilton had another suggestion. She had referred another patient to Dr. Christopher Benton at MD Anderson in Houston, Texas. She called him to discuss Todd's case. They were one of the locations that also had the AG881 trial going on. He was willing to talk to us and see Todd if we could get to MD Anderson for evaluation. This was the last thing I had expected. Dr. Hamilton felt that Cleveland did not have any trials that would be helpful to Todd and that besides the AG881, MD Anderson had multiple choices of trials. She said that we were welcome to come to Cleveland first to get him stabilized or just to treat him. Cleveland could only offer "Standard of Care" or the normal treatment options that were available and nothing more. I couldn't see transferring him to Cleveland Clinic and then to MD Anderson later. So, I began to investigate our options of getting Todd to MD Anderson.
At first I tried the Corporate Angel Network, but they did not have any flights going anywhere within 200 air miles of Houston that week. Next, I checked commercial flights. If we flew sooner than Friday morning, they would be expensive but doable. The social worker at Soin was able to work with our insurance company to get Todd a smaller wheelchair called a transit chair just in case I needed to get him there myself. Todd wasn't eating well (less room in the stomach with the spleen pushing in on it) and was needing constant transfusions and pain medication. The doctors, including Dr. Kim, his hospitalist, worked to get him off the IV pain medications and on long-acting oral pain medication (Oxycontin), so he could be discharged from Soin and sent to MD Anderson.
By Wednesday morning, I was so worried about Todd and after talking to Dr. Benton the night before on the phone, that we both felt it would be safer to send him by a hospital-to-hospital transfer. So, we both started looking into that. Unfortunately, after the social worker got three quotes from air transport companies, we were unable to pursue this option since it would cost $14,000- $16,000!!
I was determined to get him there myself and 7:00 p.m. on Wednesday, September 28, 2016 I had booked us one-way tickets on Delta Airlines to Houston for Thursday afternoon. With the help of family and friends, we were able to pay for the tickets, have money for transportation and food. All three kids were home or out of school long enough for us to spend the rest of Wednesday together. I headed home late that night and stayed up packing until 3:00 a.m.
My parents picked me up around 8:30 Thursday morning to take me to get Todd. The kids, and Todd's mom, and half brothers were there to say goodbye. Todd's brother Tom had already been out twice to see him, including the night before. It was bittersweet. I was happy to be taking him to get treatment and felt optimistic, but it was so hard to say goodbye our awesome and loving children and family. There were many tears. I felt comfort though knowing we were doing the right thing. That the New York door had closed, and this door opened. We felt peace about the decision, that this is what God had in store for Todd's treatment.
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| Todd with brothers Paul (L) and Patrick (R) |
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| Todd with his Mom, Anna Durdines |
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| Todd with my Dad and Mom Darrell and Donna Norrod |
References:
Dilaudid. 2016. Drugs.com. Retrieved from: https://www.drugs.com/dilaudid.html
Wint, Carmela. Reviewed by Krucik, George. (2012). Healthline. Retrieved from: http://www.healthline.com/symptom/enlarged-spleen
Radhakrishnan, Neetu. April 29, 2016. Medscape. Web. Retrieved from: http://emedicine.medscape.com/article/206208-overview
Spleen Infarction. Aug 9, 2016. Web. Retrieved from: https://en.wikipedia.org/wiki/Splenic_infarction
The Story of Jak2. 2016, Cure Forward. Web. Retrieved from: https://www.cureforward.com/stories/gene-stories/jak2/
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