Remission

Praise God, I am in remission! The chemotherapy did its job, and I now have at least one weight off my shoulders. I had my biopsy on Thursday and didn’t find out about the results until Tuesday afternoon, so it was quite nerve wracking having to wait. But it seems that waiting is an ongoing trend through all of this. If we all don’t learn anything through this journey (which is impossible), we will at least learn how to be more patient. Along with my biopsy results we learned a lot about the transplant process and my donor status.

 

I have to say that I am so blessed to have such an amazing doctor caring for me. His name is Dr. Morris, and he has the best bed side manner of any doctor I have seen, and I have seen MANY. He also has a way with speaking and brings everything down to the patient’s level of understanding. My last oncologist was smart, but was very awkward and not good at communicating, so this is a nice change. He spent an hour with my family going into detail what a stem cell transplant is, what it all entails, the risks, the benefits, the timeline and so on. It was very informative, but also a little overwhelming. This is probably going to be one of the most difficult things I have ever been through (as if I already haven’t been through enough), but it’s my best chance of being cured from this disease.

 

Dr. Morris informed us that the 4 donors on the registry are not going to work out. Three of them came up as unavailable, and 1 of them didn’t turn out to be a close enough match. So my only option is using my sister, 1 of my parents if she doesn’t work, or cord blood. Dr. Morris asked me if I wanted to be put in a clinical trial where my transplant type would be randomly chosen (based on my 2 options) or I could choose to use my sister or cord blood. They are really good at doing haplo (half match) transplants, and are biased to those over cord blood transplants, but there are hospitals that do a lot of cord blood transplants and would say the opposite. Even though they are both good options, and it would be intriguing to be in a clinical trial, I told him I would pass on the trial and would like for my sister to be my donor. If there is anyone in this world who could give me new life, I wouldn’t want more than it to be my sister. They are running a couple more blood tests to make sure that I don’t have any antibodies against her, which would be rare, and as long as everything comes back ok, she will be it!

 

We learned a lot in detail of what to expect with the transplant. The transplant is the easy part. It’s the recovery that is difficult for a lot of patients. Prior to the transplant I will receive what they call “conditioning” chemo and radiation. This is where my immune system will be completely wiped out. The goal is to kill every single cell, including any leukemia cells that are still hanging around. For the actual transplant they will make an incision in my chest where they will administer the stem cells. It apparently  looks like a bag of blood and flows into my body just like any other transfusion. On the actual day of the transplant most patients will feel OK….not great (due to the conditioning), but not bad enough to be in the hospital, so it is done outpatient. But 90% of patients end up back in the hospital around days 3 and 4 due to fevers, infections and just feeling pretty bad. I am expected to spend at least 7-10 days in the hospital feeling pretty sick based on the majority of transplant patients. Then after about 2 weeks post transplant, the body begins to engraft and will start making new blood cells. That’s when patients start feeling a lot better and somewhat normal. The first 30 days are the most crucial where they monitor for GVHD, infections, other complications and give blood transfusions as needed. I will be in the clinic every single day for the first 30 days….yippee! After 30 days it will move to every other day or a schedule similar to that for 70 more days (totaling 100 days). Then after 100 days it may go to once a week, or something like that. And that is if everything goes well. It’s so uncertain what to expect because every patient’s experience is different. So I’ll just have to update you all along the way! There is also so much more we learned about the transplant, but I don’t want to get into all of the crazy details here. You’ll  most likely here about it anyway as I experience it.


I will receive 1 more round of chemotherapy to maintain remission before my transplant. It can take 4-6 weeks to get everything in order for a transplant so more chemo is necessary. By the time my counts drop and recover everything will be ready for the transplant. I start chemo next week, and if all goes as planned should have my transplant within the first couple weeks of January.

 

One of my second cousins on my mom’s side actually had AML as well, 9 years ago. It took doctors over 2 years to diagnose what he had. It didn’t start as AML, and he most certainly wouldn’t have survived for 2 years with AML. I believe it started as some blood disorder, and then progressed into CML, and then in to AML. He was first treated in Denver, and they didn’t know how to treat him correctly, so he then went to get a bone marrow transplant at NIH. He had many complications along the way… trying to find out his diagnosis for so long, an enlarged spleen (he looked pregnant) that had to be operated on, being so skinny and frail many didn’t think he was going to survive, and his transplant that saved his life and has cured him as he has been in remission for 9 years! It’s a true testimony to God’s faithfulness and healing! And it gives me so much hope. It looked very bleak for him, but he made it and is happy and healthy, praise God.

 

As I was driving to the clinic today, I was thinking about all of my blessings even through all of this. I have so many! I was thinking about how things would be so much different had I been still living in Denver. Although they have a great transplant center at one the local hospitals, from everything I could find online, they don’t do cord blood or haplo transplants. So I would have had to find a treatment center outside of Colorado which would bring so much difficulty. But here I am, in Atlanta, living only 20 miles from one of the top 10 transplant programs in the nation. And when I was living in Denver and getting treated the first time, a transplant wasn’t needed. God really does some amazing things. Out of all places we ended up here. I also think about how I could have relapsed when I was pregnant (in which I would have had to terminate), or when Londynn was under a year. I am so grateful that if this had to happen again, it happened at a time that she is young enough that she won’t remember any of it but old enough that she isn’t dependent on me anymore. Throughout my adult life I have seen and admired God’s timing and know without a doubt that His time is the best time, even in tragic situations. There are many more good and amazing things in my life, too many to count, but it’s in times like these that we can really see that the blessings never stop.

 

It’s almost the weekend so I hope you all enjoy yours! My Dad and sister are coming into town Saturday, so I will definitely be enjoying mine J

 

PS – Sorry if my posts seem random at times. I just write what I am thinking which can be very random!