June 7, 2018 - Fever Dreams...

What a day it was Monday (June 4).

Bad night of sleep, left the house at 6am, spent from 7am-2pm getting bloodwork and transfusions at UofM. Barely ate while I was there. When you receive transfusions they monitor your vitals (temp, blood pressure, heart rate) about every 15-20 minutes while you are receiving the blood. They also monitor you for 30 minutes after the transfusion is over. I made it the entire day sitting there, receiving blood, with perfect temp the entire time, only to arrive home at 3pm and start running a fever pretty immediately. 

I had been feeling "cold" on the car ride home, but my sister agreed it was also cold so I didn't think much of it. When I got home our house temp was 76 degrees and I was still feeling cold, but I wasn't having chills or anything like that. I immediately changed into long sleeves and bundled under a blanket. I would have guessed the room temp was about 55, not 76. I took my temp right when I got home and it was 99.6 even though it had been 97.9 only an hour before. 

I also come home to find that Alan's "sore throat" that we thought was just a typical side effect for him of having slept in a hotel (his family attended a wedding in Toronto over the weekend) has now pretty much progressed into a full on head cold / sinus infection. This means I can't be anywhere near him now until he is cleared. Which means if my temperature were to spike, he can't go to the hospital with me. I put out the message on Facebook hoping that I wouldn't need to act on it. Thanks for everyone who responded that they could be available if needed!

My thermometer is kind of wonky so I wanted to get multiple reads that were either consistent or rising, both because I wanted to avoid anyone having go take me in rush hour and I didn't want to get to the ER only to find my temp is normal. So even though at 430pm I hit the 100.5 threshold, I decided to just rest, hydrate, and wait til 6 or 630 and double check again. I figured a 2 hour drive at rush hour vs waiting 1.5 hours then having only an hour drive would only put me a half hour behind on receiving treatment if the fever stuck. 

At just before 6pm I took my temp again and it was 103.7 - and I went into panic mode. I don't think I've ever had a fever that high even under normal circumstances. I called my wonderful friend, Rachel, who had said she could be on call for driving if I got a fever while Alan was sick, threw a miniature go bag together, and we were on the road within 15 mins.

We arrived around 7pm; I had called my doctor's after hours number and let the on-call doctor know I was coming, so they already had me down on a list at the ER. Due to this, combined with my symptoms and that on initial triage my HR was 160 and my temp was 102.7, I was taken immediately back to some sort of critical ICU place in the ER because of my low counts, high hr, and high temp. I arrive at a room with at least 8 doctors and nurses in it. By 8pm I had been triaged, hooked to IV, heart monitors put in place, and an EKG and chest xray done. 

Although i know my dire situation caused them to move so quickly, I feel so grateful that it did because while waiting to be let back to my room Rachel said people were talking about 3+ hour waits. I would guess there were 25+ people in the ER waiting room. 

Initially they didn't have the necessary 1" needle for my port so they had to order it from another area of the hospital, which could take a while. They really wanted to get me on fluids asap because of my heart rate, so they asked if they could start a peripheral line. I explained my bad vein history, showed off some of my 1 month old failed IV bruises, and they suggested to bring in an ultrasound tech to look for a vein. It turns out that I actually have a pretty big vein in the crook of my right arm, but she said it is so deep there's no way they would ever see it on the surface or even with the little infrared tool. At least now i have this info for future reference.

So once all that was hooked up they put me on fluids and were drawing blood cultures to check for infection. I also needed to provide urine sample. Once all the samples were taken they decided to put me on antibiotics because they were pretty sure it was an infection, not a reaction to the blood I had received earlier in the day.

Shortly after 10pm I got moved to a new room, still in the ER, called the emergency critical care unit. It's a private room with real walls and a tv, but it also doesn't have it's own bathroom. Since I can't really use public toilets they brought me one of those things where it's like a bench with a hole in the middle that they put a bucket in. I was told that I would probably be in this room for quite some time (well into Tuesday) because the hospital was entirely full and there were something like 48 (or 98, I can't remember) people waiting for rooms. When I got to this room I had finished one round of antibiotics, my temp was 97.8 and heart rate down to 117. I thought things were looking up. Boy was I wrong.  

Within 30 minutes i was complaining of being cold in the new room and about 10 minutes later was in full body shiver mode. My legs, arms, everything was shaking vigorously, teeth chattering painfully, and i couldn't control it. My heart rate back up in 160s and all I wanted was to feel warm. I would have paid $1M for a warm blanket in that moment, but the doctor said you should never heat a fever. The shivers are the body's way of regulating the temperature, and even though you feel cold your body is actually very hot. 

The last round of chemo when I spiked a fever, I had gone through this one round of chills and once my fever broke my temperature never went up again. So when my fever finally broke just after midnight I thought once again that I was out of the woods. Once again, I was wrong. 

I would have to say that the 4am hour of Tuesday, June 5 was probably the absolute worst of my entire life to date. I cannot remember ever feeling so desperate and helpless, with a complete loss of all dignity. 

Just  before 4am I started to feel cold again, and within 10 minutes the chills/convulsions started. To make matters worse, by this time the antibiotics had started to wreak havoc on my intestines, I had a severe cough which was causing some issues with control of bodily functions, and as my temperature rose so did my heart rate. This time around my heart rate was spiking in the high 190s. Everyone kept freaking out about this and I was terrified that my heart was going to explode or something. How high can your heart rate go and for how long before that happens? 

I was also scared about the fact that I was having a second round of this severe fever, because I have a lot of paranoia about developing antibiotic resistances, since I already had two strains that had some resistance last time, and I still have so many rounds of chemo with potential infection to deal with. What if I become resistant to all antibiotics? How will they treat me? Will I just die from infection? How could these resistances affect any sliver of chance I have left of getting a bone marrow transplant?  

The icing on top of my anxiety cake was the fact that Alan couldn't be there with me. For normal hospital stays where nothing traumatic is happening I don't mind being there alone. In fact, I sometimes prefer it because the doctors and nurses will normally get more chatty with you if you're alone and you get to know them better. Plus it gives me a lot of time to think and reflect on things. But I had never been alone during something severe and traumatic like that, and I was worried about wanting to update Alan on what was happening or who would call him if something went wrong. 

As my fever started to break my heart rate was still not coming down, which the nurse thought was because I was so anxious. She asked the doctors to order me some ativan and I don't remember much of anything that happened for the next couple hours after that. I suppose I probably fell asleep for part of the time. I was still groggy when I woke up, but managed to order some breakfast. I ordered a really elaborate meal but only managed to eat half a piece of french toast before immediately needing the bathroom so I was too afraid to eat anything else. 

My heart rate was still high on tuesday (140s) and my temperature still wasn't controlled. I also had an intense pressure in my head that mostly felt like it was in a vice grip. They continued to give me fluids, potassium, magnesium, and even had to get another bag of platelets because they had already dropped below transfusion level again. 

Eventually in the afternoon I found out that they had figured out where I would be admitted: to the regular cancer center in the University Hospital instead of the Leukemia/BMT area in the Mott Children's Hospital. At first I was a little disappointed about this, but then I found out that my doctor, Dr. Bixby, was going to be the rounding doctor for at least the rest of this week so I actually preferred that over being placed on the other unit. 

While I was still waiting on a bed to open up on that unit both the resident and the medical student that was going to be part of my team during my stay came to talk to me. They both seemed really nice and knowledgeable and I had a really great connection with the med student, Elizabeth, in particular which was nice to feel like I kind of had a "friend" there for me after feeling so lonely during that 4am hour from hell. 

Eventually they came to take me up to Unit 8A of the University Hospital to my room. This room is much smaller than previous rooms I've been in, and no personal fridge, so it kind of works out that Alan wasn't able to come with me because there is only a really uncomfortable looking chair for him to sleep in, they don't have cots or anything like that. I do have a really nice view though, and I saw a beautiful sunrise from my window on Wednesday morning. 

About 12-18 hours after making it up to my new room my fever eventually stabilized and I haven't had a fever at all today (Thursday). They also found out that my blood cultures (in both my port and from my IV) came back positive for e coli. I had e coli last time too. Luckily no VRE this time. My doctor said that the reason that I am getting these infections is most likely because the very strong chemo that I am on thins the wall of the intestines that normally protects from gut bacteria getting into the bloodstream, and when they are thinned out then the bacteria that is naturally already there can sneak through into the blood. So for all my million precautions, avoiding my cats, avoiding going out in public, sanitizing everything, etc. basically none of it could have prevented this. 

I have since had two more sets of blood cultures drawn, and they both haven't shown any bacteria yet. This is an indicator that the IV antibiotics I'm on have taken care of the infection, which is good. In order for me to be considered "clear" the final sample drawn this morning has to go two days with no growths and I have to maintain my fever-free state. Other requirements to go home are neutrophils over 500 (as of Thursday they were 300) and they need to figure out what type of antibiotics to send me home on, because clearly both the Cipro that Karmanos sent me home with after the induction chemo and the levofloxacin that UofM sent me home with this time were ineffective at preventing the e coli. They are thinking that it might need to be an IV antibiotic situation since two oral forms have already failed. 

Aside from the infection, a couple other problems have popped up since I've been here. One is some pain on my left side. I would almost describe it as a floating pain. Sometimes it's in my rib cage, other times it feels like its in my abdomen, sometimes lower like in my hip bone area. The doctors think that it is musculoskeletal caused by pulling/straining something either because of coughing so hard for so long or from my shaking during my fever chills. I feel like the pain is more internal than that though and they decided to do a CT scan today. I went at 430 pm and I expect I won't get the results until Friday unless something had been emergently wrong. The main thing that I'm paranoid about is an infection or other issue with my appendix. I don't know why I am specifically paranoid about that, but I am even further paranoid about needing some sort of emergency surgery when I have no platelets and no immune system. Just sounds like a recipe for disaster. 

The other thing that is going on were some bumps that I noticed in my pelvic area. I was rolling over while trying to sleep and felt a twinging pain and I felt a couple of bumps. I called for my nurse, who brought in the on-call night doctor and he thought it was ingrown hairs. I told my main medical team about it in the morning and Dr. Bixby said it looks more like a goose-egg type bruise (think like when you bang your shin on a table leg), which could have been caused by cleaning the area too vigorously. We will continue to monitor those as well, but he didn't think they were inflammation or a cyst or infection or anything. 

That's pretty much all for now, more updates once I'm finally home! 

Special thanks to: 

my sister Lauren for staying with me all weekend while Alan was in Toronto (and helping organize my clothes!), and staying with me during my transfusions on Monday

my mom and Phil for driving over 200 miles (and 4 hours of travel time) to drive from their house to pick me up, drop me off in ann arbor, then go back home, pick me up after my transfusions, and drive me home so that we could ensure Alan could go to his own important doctor's appointment that day

Rachel for getting me here and staying with me a few hours in the ER

Christen and Dave for visiting and bringing me lunch (on their wedding anniversary no less!),

my mother and father in law for visiting and bringing my computer which I had forgotten at home

Kelley for visiting today and bringing me lunch

And last but not least to Alan for holding down the fort at home while I'm in the hospital; taking care of the cats, doing the major spring clean up of our yard, and cleaning up the house all while he's been battling a pretty nasty sinus infection himself. Hopefully he's better before I come home so that we can actually be together. 

Much love to you all!!

June 1, 2018 - 3 of 3 What does remission really mean?

As anyone who follows my posts on facebook already knows, the results of my May 16 biopsy showed no evidence of leukemia, this means that my disease is currently considered to be in remission.

What does this really mean???

A lot of people have been asking me what does this mean, so I want to put this at the beginning of the blog, ahead of all the details, instead of at the end. 

For starters I will accept and acknowledge that is great news because this was not the statistically likely outcome. I feel very fortunate to have received these results. BUT it does not mean that I am cured, and am far from out of the woods as far as this disease goes.

When the bone marrow sample is taken and looked at by pathologists, they look at a sample of 500 cells under a microscope and they count how many of each type of cell is seen in there (hemoglobin, platelets, etc.) So what the results tell us is that for the 500 cells that the pathologist looked at, there was no evidence of leukemia. But Dr. Bixby informed us that the marrow is made up of over 1 TRILLION cells, so this is not really a statistically significant sample but it is pretty much as good as you can get as far as getting an idea of what's going on.

So because of this, remission after the induction phase is always followed up with a consolidation phase; the body can handle about 4 rounds of the consolidation treatment, and they are spaced about 4-5 weeks apart. According to Dr. Bixby transplant is still the ultimate goal, even though Dr. Riwes and her team have said that they will not consider me a candidate. Dr. Bixby is still fighting for me though.

MLL Rearrangement

Dr. Bixby explained to us again at this appointment about the additional mutation that is within my specific type of leukemia. My cells had something that is called an MLL rearrangement, which means basically that during cell replication the 11th and 19th chromosome somehow got spliced and swapped their bottom halves, which is what makes my specific disease more aggressive and less treatable than some other types of AML.

Consolidation Chemo

We were explained that over 30 years ago researchers found that remission achieved during the consolidation phase of chemo is never sustainable, so with any type of AML a consolidation phase is begun, which I kind of think of as maintenance chemo.

For the MLL rearranged leukemia the most effective treatment during consolidation is a really high dose of cytarabine, which is one of the two drugs that I received during induction. The induction phase was 3 days of a drug called daunorubicin, which was injected for 20-30 minutes on each of the 3 days, and a 7 day continuous flow of cytarabine. My consolidation chemo will be a very high dosage of just the cytarabine given as 6 infusions spaced 12 hours apart. Each infusion lasted for about 3 hours.

Because of the extra high dose of the cytarabine I had to have additional precautions in place to protect against or determine certain side effects. I was put on steroids (hate them!) to help reduce nausea. I had to get drops in my eyes every 6 hours, and I had to do a coordination test an hour before each of the 6 bags of chemo. The coordination tests were things like a nurse had to witness me walking around the room or to the bathroom to tell that I could maintain balance, I had to sign my name to a piece of paper to monitor the consistency of my hand writing, and I had to touch my nose then the nurses finger back and forth as they moved their finger around.

Hospital Stay 

My time in the hospital was pretty uneventful. Either because I was on the steroids or because of only being on the cytarabine and not the daunorubicin, I didn't really get very much nausea or feel sick and tired like I did the entire week I was on induction. It also helped that the UofM hospital food was much better than the DMC. They had a robust menu and you got to pick and call in when you wanted your food to arrive, rather than a plate of breakfast arriving at 7am every day even if you weren't going to  be ready to eat until 10. 

The nurses and doctors there were all friendly, but we didn't get to know them too well since we only had to stay for 3 nights vs all the time that we had spent at Karmanos.

Discharge 

Once my final bag of chemo was done early Monday afternoon we were free to leave the hospital. I had to go to the clinic in Northville on Tuesday to get something called a Neulasta shot. This helps stimulate the production of white blood cells, and specifically neutrophils so that your levels recover more quickly. I also have to have my blood levels checked 3x per week to see if I need any transfusions.

Originally they had said that I could arrange to have my blood work and transfusions done at a more local clinic (since Ann Arbor is an hour away), but this is proving to be very difficult to coordinate. Dr. Yang from Karmanos has refused to keep me on as a patient in this capacity and there is some doubt over whether it can be properly coordinated through Dr. Philip (my oncologist for my neuroendocrine tumor) so the plan right now is to just make the long drive 3x per week. It really sucks because those are several extra hours of driving and probably hundreds of dollars of gas that we now have to take on. But all of this just solidifies the decision to go to UofM as being the right choice.

The expectation is that my levels will drop drastically about 7-10 days after the start of chemo, remain down for another 7-10 days, and then recover over the 7-10 days after that. Just in time to come back and do it all over again. Based on the fact that I started chemo on a Friday and my Neutrophils were already down to 700 (from 7100 on Monday) by Thursday, I am guessing I am going to be closer to the 7 day mark on that first part. Now I just need to be quarantined on fever watch for the next 7-10 days and hopefully my counts will start to pick up again. If I get a fever all all (100.5 or higher) then I need to go to the emergency room and I will be admitted until my neutrophils are more than 500 and any infection is cleared up.

Statistics 

We asked Dr. Bixby about the potential outcomes with and without transplant and also asked him to address some of the concerns we had about the transplant process based on our conversation with Dr. Riwes.

Dr. Bixby said that without transplant the average time for someone with MLL Rearranged AML to remain in remission is approximately one year. Some are much less and some are more, but the average is one year. There is less than 5% chance of there not being a recurrence without transplant.

With all the risk factors of transplant, Dr. Bixby said that the survival rate would be around 30%. So, still not great but better than 5%, which is why he is still advocating for the transplant for me.

Future Treatment

Now that I completed the first round of consolidation, there are 3 more to go. My next hospital check in is June 28. The next one after that will probably be early August and then early to mid september. There is some leeway in the dates of when I will receive it, so they said I can try to coordinate around my counts being good for certain events I already had planned, like a handful of concerts.

That's all the updates for now. Thanks to everyone for all of your love, support, prayers, positive thoughts, amazon shipments, and donations.

June 1, 2018 - 2 of 3 Bone Marrow Biopsy and Port Replacement

After my initial consultation at UofM I was set up with appointments for a bone marrow biopsy and to evaluate and fix/replace the port in my chest.

I went on Monday morning to my primary care office to have blood drawn to check and see if my levels were high enough for the biopsy that was going to be scheduled on wednesday. Since my counts were starting to rebound we went ahead with the appointment as planned.

Bone Marrow Biopsy 3.0

When I arrived on the 16th the first step was to go to the blood work lab to get my labs re-drawn as well as to get a bunch of markers drawn that would be used in evaluating my transplant eligibility. It is well known that my veins are not easy to work with, and with my port still out of commission I was dreading this. Then the technician printed up all of the labels for the tubes, there were at least 16 of them and I started to panic. However, the lady doing the blood draw was amazing. She got a vein right away on the first try and all of the tubes filled quickly.

Next we went back up to the leukemia clinic to wait for my appointment with Heather the PA. First a nurse or medical assistant (not sure which she was) took my vitals and let us know that she would be part of the procedure, playing music and massaging my back during the procedure. We laughed because we thought it was a joke, but it wasn't. During this biopsy I lay flat on my stomach with Ed Sheeran playing in the background getting a massage. The biopsy was still painful, but the pressure was much less with being flat on my stomach instead of on my side.

After the procedure I had to lie flat on my back for 15 minutes (to stop any bleeding) and then we were free to go. Overall a pretty uneventful appointment.

Port Replacement

On the 22nd I had my appointment with interventional radiology. I was dreading this because of the prospect of having to have my chest cut open and getting anesthesia. For some reason I have this intense fear of not waking up from anesthesia.

The morning starts off badly because we are running late and we have only ever parked in structure P4, not P2 and we couldn't locate P2. We decided to just park in our normal spot and navigate the hospital hallways, which was no small feat because the interventional radiology was in the University Hospital and we are normally in the Children's hospital. So we finally get to IR and get called back. It's one of those areas where they have lots of people in different stalls separated by curtains. While we are waiting they come and hook up an IV, which the nurse also did expertly and surprisingly easy (another part I had been dreading).

The radiologist came by to talk to us about what was going to happen. He asked questions about my existing port and explained what he thought we should do. Basically the plan was to prep me as if I was going to have the procedure, but that he would take images to confirm the other port was un-fixable before doing anything.

Once in the room I was again invited to pick a pandora station to listen to during my procedure (I went with Ed Sheeran again) and they began prepping the sterile environment. They have a big xray machine that does live imaging and they took some pictures of my existing port to get an idea of what was going on. I could again see on the screen where the catheter was flipped over on the inside, and the radiologist said that he wasn't going to be able to flip it back. The anesthesia for this procedure is just twilight, so I actually stayed awake through it all which was kind of interesting.

Before going back we had also agreed that the new port would be on the right side instead of the left where the current one was. He walked us through the process and the reasons why the right side was a better, more direct approach. In order to install the new port he first had to make an incision in my chest and create a "pocket" for the port to sit in. The port kind of looks like a little metal pot that has a rubber bubble over top of it. The rubber bubble is the part that sits against my skin where the nurse pokes the needle in when the port is accessed. Next he would make a small puncture on my neck and insert the catheter into the vein. I'm not really sure how they get the catheter in the vein to hook up with the port in the chest (based on the location of the two cuts) but I guess it all works out and connects somehow.

After the new port was in and the incision stitched up he moved onto the left side for the removal. The removal was a little more difficult than expected because tissue in my chest had grown around the port after it being there for 2 years. They had to cut the tissue away and then remove the old port and catheter. He had to cut slightly below the old incision to do this, so now I will have a double scar on that side.

Other Updates

So due to the bad rash that I had gotten after the piic line and mid line at Karmanos, we made sure they knew that I was sensitive to adhesives and they used something called tegaderm to cover the incisions. This is the same thing that is used on a normal day when my port is accessed.

The procedure was on Tuesday and by Wednesday night I noticed I was starting to get itchy on my chest and back of my neck. I could feel little bumps too. I thought it was weird that they were on the back of my neck, but then I remembered the nurse wiping down the back my neck after the procedure saying that the sterile cleanser had dripped around there. I immediately called the after hours clinic number to ask if it was OK to remove the bandages (12 hours early). I had Alan help me remove them and thoroughly clean all of the betadine off of my skin from under the bandages. Luckily because we recognized this early and cleaned it off quickly the reaction didn't seem to get as bad as the ones on my arm did.

 During the time my counts were up I was able to get out to see some of Alan's family at a get together and go to dinner with my family. We also took advantage of our Movie Pass, going to early day time showings where there weren't a lot of people and I could use my lysol wipes on the seats before sitting. It wasn't much, but it was better than being quarantined to the house or hospital.

That's all for now :)

June 1, 2018 - 1 of 3 The Michigan Difference

I've been posting a lot to facebook incrementally, but not really keeping up a cohesive story in my blog, which I really wanted to do. Since I have about 3 weeks worth of stuff to write about I'm going to break it up into a couple of different posts. 

My last stay at Karmanos for infection ended on May 8, and I haven't spiked a fever since being discharged (as of June 1)

My consultation at UofM was at 8am on May 10. We left the house just before 7 for the drive over. It wasn't too bad of a commute, long but not awful. 

The leukemia clinic is located in the newly renovated Mott Children's Hospital of the UofM Hospital campus. The facilities are very nice and the inpatient area is in an area next to and the next floor up from the clinic. 

Meeting with Dr. Bixby - Acute Leukemia Team

Our first meeting of the day was with a Physician Assistant named Heather, who was extremely nice and knowledgeable. She went through my medical history, her understanding of my current situation and recent diagnosis/treatment, etc. We let her know that we weren't just there for a second opinion but we also had the intent to transfer all care to UofM from Karmanos. After talking with her a while she left and came back with Dr. Bixby. 

Dr. Bixby was the type of guy who, when he walks in a room you just have a good feeling about him. He had a great bedside manner, was knowledgeable about the disease and took the grim prognosis seriously while still having positive attitude. He seems like he is the type of doctor to advocate for his patients. He speaks slowly and explains everything in both medical terms and normal people terms. He's just someone that you feel you want to be on your team. 

Dr. Bixby had a great understanding of my case so far and where we were at. He also had developed a plan moving forward. Today was the 10th, and all of my counts were still low. He wanted to wait until the 16th for them to come up, and then Heather would perform a repeat biopsy to determine whether the induction phase chemo worked. After the biopsy I would come  back on the 25th for an appointment with him to hear the results, and he said to pack a bag that day because if the leukemia was in remission I would be starting the first round of consolidation chemo over the weekend. 

In addition to this, he wanted me to get an ultrasound on both of my arms before leaving that day because of how swollen they were from the reaction to the picc and mid lines from Karmanos. He also was going to have someone from his team contact interventional radiology to set me up with an appointment to have my port evaluated and fixed/replaced as necessary. 

Meeting with Dr. Riwes - Transplant Team

After our meeting with Dr. Bixby we had some time before my appointment with Dr. Riwes from the Transplant team, so I got the arm ultrasound done, which came back with no clots. 

When we met with Dr. Riwes it seemed like her entire job was to convince us to decide on our own that I didn't want a transplant. She gave us details on the process of actually receiving a transplant as well as the statistics associated with receiving one. 

She told us that the process and recovery itself takes about a year overall. First you have to go through a battery of tests to make sure you are healthy enough to receive the transplant, this includes that the leukemia has to be in remission at the time of transplant. The main catch here for me is my pre-existing cancer, but more on that later. You also have to document that you have an adequate support system in place. After transplant you can't drive for 3 months, if you don't live within a certain radius of the hospital you have to move (or get a temporary place in Ann Arbor), you're basically in quarantine and for a certain period of time you have to have a 24/7 care giver. The caregiver has to have multiple alternates because if one of them so much as coughs funny they can't be in the same room anymore. 

If you pass all of the tests and they find a donor, then you start the process, which begins with really intense chemotherapy in order to clean out your bone marrow and weaken your immune system. After the transplant they give you further medicine to suppress your immune system. The reason that you need to suppress the immune system is so that your immune system doesn't attack the new cells but also so that the donor's immune system doesn't attack your body, which can cause something called Graft Versus Host Disease (GVHD). 

She also gave us the statistics about transplant outcomes. She said that about 20% of people don't survive the transplant itself. For my specific type of leukemia there is also a high recurrence rate even after transplant. Then there are the risks of GVHD, which can cause severe and chronic issues with your skin, respiratory system, digestive system, etc. and also the risks associated with my neuroendocrine carcinoma. There is not really any research or documentation on what complications the transplant could cause for that, and if the high grade tumors did decide to start growing again within this process I would be unable to seek treatment for them. 

After all of this, Dr. Riwes said that the decision to transplant or not is generally made based on whether the doctor's thought they would be doing more good than harm. She said that she believed in my case it would be doing more harm than good, but that she was still going to present my case to the transplant board to get an overall consensus. 

Overall a very good first experience with UofM and we were glad to have transferred my care to them.