Well its been awhile since our last update. So much has happened so before you read I am warning you this will be long...like always :)
To start where I left off on the last post, we did the IVF stuff to try and freeze some eggs. Well, that all just went a little crazy. My body went crazy to say the least. I got over stimulated from the hormones which caused a lot of issues. First when they went to retrieve my eggs they went in and saw that what they thought were hundreds of eggs were actually all cysts all over my ovaries. My doctor spent an hour just draining all these cyst. She got two eegs out but they ended up not being good so we couldn't use them anyway. I remember waking up after the procedure and hearing that I had all those cysts instead of eggs and I looked at my husband and told him "this was the most pointless thing I have ever done in my life" then we of course laughed about how true that was! We both felt really frustrated and annoyed at the situation.
Next, the next few days I did not feel good. I couldn't keep anything down and just felt like crap really. I went to my doctor and they found fluid in my stomach and in the Right lung. I ended up having to get this fluid drained from the stomach and my lung not just once but 3 times. My stomach would fill up so much with fluid I looked like I was 30 or so weeks pregnant (that is not an over exaggeration) it was crazy and it was very uncomfortable especially since I had fluid in my lung I couldn't breathe very well and getting fluid drained was not fun at all but it provided me instant relief so it was a love hate thing. I ended up having to stay in the hospital for a few days just so they could monitor me and make sure my labs and everything would return back to normal. Finally my body was able to get back to normal after about a month.
After all that crazy happened I met again with my gyn oncologist and we started talking about what the next step was for me. She let us know that she was concerned with how my HCG (tumor marker) levels were going. How they were still rising but not quickly enough for chemo. She was worried to just let my levels still go up without doing anything because in all honesty this could start spreading throughout my body at any second and then it would more difficult to treat. We started discussing doing a hysterectomy and we were thinking this would probably be the next step for me. She re drew my labs and Mike and I were supposed to go home and discuss if we were comfortable to proceed with a hysterectomy. Obviously this was a really big decision for us to make and she did not want us to make that decision right then and there. So we went home and talked about it a lot while we were waiting for my labs to come back.
My lab results came back and for whatever reason my HCG level started to drop. So this meant the hysterectomy was off the table since these levels were dropping. This was probably the best news Mike and I have received in a very long time. It actually took both Mike and I a good 3 or so months to actually believe that my levels were really going down and that something good was actually happening. In all honesty neither Mike or I were really that excited at first because it was almost just too good to be true.
Of course, right when we started to really get excited and think that this was it, this stupid thing was finally going to leave, I received my monthly lab result that my HCG level started to go back up again. I felt very numb, very angry and just really really sad. I asked God why he would do this to me? Why would you get all my hopes up like that. I questioned if there was really a god and I questioned if there was a god does he really love me? I think everyone goes through moments in their lives where you ask these questions. I do not think it is a bad thing to ask these questions especially if you are truly willing to find the answers. Asking questions is not a bad thing, it only helps us grow. I can tell you that there is a god and he is very loving and cares very much for not only me, but for everyone. After a lot of praying and asking a lot of questions I knew everything was going to be OK. I felt a lot of peace and I was ready for whatever was going to happen in the near future
We again met with my gyn oncologist and she said she wanted to get some imaging, get some advice from a few other doctors and re draw my lab work before making and huge decisions. My HCG level was going up but still not very much. My level was at 42 at this time.
Recently I went in for my repeat labs. My HCG level came back at a 29. For the second time my levels are going down. I don't know how to feel about it. I am very thankful and I am reminded one more time that god is there and is very much aware of me.
My Levels could go up and down like this for months or years. No one knows, this thing is so random and has a mind of its own. Its crazy to look back and think we have been dealing with this for almost two years. Two years ago I found out I was pregnant. Its just crazy to think about. It also makes me think about anniversaries and how cool it is to have a day that you can look back on.
This time of year is always a little hard for me. All the anniversaries start coming up. The beginning of october is when we first saw our little babe on that Ultrasound bouncing around in there and just looked like he loved his life. Oct 31st was when we told our families we were pregnant. A few short weeks later we found out it was a boy. The beginning of December is when we found out about the situation of my pregnancy and December 18th is when we had to say goodbye to that little sweet baby. No matter what the anniversary is, a happy one or a sad one, I think its cool that I can look back and see how far I have come as a person. I have learned so much about myself about Mike and about my savior and heavenly father.
One last thing I want to share with you and that I think it is a very important lesson I have learned recently. I have the opportunity to volunteer in the LDS Temple every Saturday. One week I was standing in the Dressing Room and looking at this picture of the savior walking through the street with people all around him. There is a women who is kneeling on the ground and is tugging at his clothing all she wanted was to touch him. As some may be familiar with this story, we know that Christ stopped and knew that this women touched him. In all the hustle and bustle that was going on around him he felt that touch and he stopped and took the time and went over to this women.
As I am looking at this picture a thought came into my head. "I have performed many miracles, why can't I perform a miracle in your life?". This hit me really hard and has had a really big impact on my life. Was I doubting God and his capabilities? Sometimes, maybe I was!
We learn a very important lesson from this story of this women. Christ stopped and went back to find out who touched him. He cared. I want you to know that he cares about you and your life. He cares about everything going on in your life the good and the bad. He is never too busy to be there for you. There is nothing or no one more important in this world. He loves you, he hears you and he wants the very best for you. No matter what is going on in this world that you think is more important than your problems just know, that he will stop and listen.
SO now we just still play the waiting game. We hope and pray for things to still go the way they are going, but we are also very much aware that it is all in Gods hands and whatever happens is supposed to happen but we try to stay positive and hope for the best!
As always Mike and I are very grateful for our families and friends that have been there for us through it all. We couldn't get through it without you. Thank you! we love you!
Mike & Amy
Sunday, October 22, 2017
Monday, April 24, 2017
And We're Back
Well... Here we are again. Our last blog post was titled "The End" and as you may have guessed we were wrong when we said it was "The End." Maybe we jinxed ourselves? I don't know. First, If you are new to our blog it may be of benefit to you if you go back a read the last few posts so you are not completely lost.
Mike and I moved out to Kansas City in July, the day after I finished my last treatment and removed my port. We were excited for this new chapter in our lives and were ready to start new and to move on. We started doing follow up with Dr Ernst who is a heme/oncologist and this consisted of just monthly lab draws to make sure my HCG level (tumor marker) was still at zero. In October I received a call from him saying that my HCG level was at 16. My heart dropped as I thought to myself "is this really real life right now?". We decided that I would need to get a CT scan done to just make sure nothing had spread outside of my uterus. Scans all came back normal. Dr Ernst decided to get a second opinion from Dr Jewell who is a gyn oncologist and we will be forever grateful that he did this.
Since my levels were so low and were staying low, Dr Jewell wanted to just watch my levels and see what would happen. She said sometimes when they see low levels that aren't really doubling fast they will eventually go away by themselves. Eventually meaning months to years. So thats what we did, we watched my levels and they slowly kept going up. Once we saw the trend of them going up and not really stopping or plateauing, we knew this was probably not going to go away on its own. In between all of this I had more labs done and imaging done and in all my scans they could not see where these group of cells or tumor was that were causing my HCG to go up. They decided I should have a D&C to clean out my uterus and maybe that would help so we did that and that didn't do anything. So, I did more imaging. Recently, I had an MRI done and they think they have found where the tumor is in my uterus. So now what? Well, the problem is, my levels are going up but they aren't going up fast enough to where Chemotherapy will actually work. If cells aren't multiplying and dividing fast enough chemo just doesn't do the trick. If I were to do chemo right now, nothing would happen. There might be an option to try and do surgery and take out that part that they found but it could end in having a hysterectomy if something went wrong during surgery, or my uterus just wouldn't be as strong and may affect being able to carry a baby to full term in the long run but nothing has been decided right now. Either we will just have to wait until my HCG levels decide to multiply and start going up like crazy to start chemotherapy or we will try surgery. Both have pros and cons and we have no idea what we are going to end up having to do.
Dr Jewell Recommended that we should probably do egg retrieval and make some embryos, in the case that I do need chemotherapy, then I will still have an option to have kids in the future. With chemo you never know how it will have an affect on your fertility. Mike and I both felt really good about this and felt like it was the right thing to do. So that is what we are doing as of now getting these eggs out and making babies. :) I have another MRI scheduled to make sure it is consistent with the other one and then we will talk about what the next step is for me and what the best option is.
It has taken awhile to even mention this to anyone besides our family, because we're pretty much in denial that this was actually happening. That the 4% chance of this coming back was actually happening to me. But what can you do? We try to move forward with positive thoughts and we do know that everything will all be ok one of these days! We decided it was time to let all our friends and those around us know what is going on because it is a big part of our life right now and many of you have followed us on this journey and it is time to stop being in denial. :)
Thats all that is going on, we will update when we know exactly what the next step is for me :)
Mike & Amy
P.S. For the medically savvy it was originally diagnosed as Quiescent Gestational Trophoblastic Disease but now is Minimally Invasive Gestational Trophoblastic Disease (Neoplasm)
Sunday, July 24, 2016
The End
We can't believe it has been just over 4 months since our last blog post. Time is seriously flying by and its a little crazy! But also good. We have been so happy and truly blessed that these last 7 months have flown by like they have. So this is going to be the end of our crazy chapter. We never thought that this last blog post of this crazy time of our lives would ever happen, but we are so happy that it actually is happening. Maybe I will find something else to blog about now instead of weird pregnancy cancer problems... haha
So our last blog post talked about how I had to switch treatments. These treatments happened every other week so I had two treatments a month. The first few treatments really didn't bother me. It was the usual feeling tired and feeling just a little "off" but then about the 3rd or 4th treatment I felt the nausea. I felt like I just wanted to lay in bed and not do anything. With some treatments I wanted to eat every second and with others I wanted to vomit just when thinking about food. I never really knew how my body was going to react with every treatment because something would be different every time so that was actually really annoying. It also got to the point where certain smells, like alcohol prep pads, or even the thought of me getting treatments made me sick. Feeling my port or looking at it was something else that made me just feel kinda disgusted. It was just a weird thing.
My HCG levels, which are my tumor marker, decided to be really stubborn at the end. The goal was for it to hit negative which is considered 3 or lower. At the end my levels went from 5 to 4 to 4 again and then finally fell to a 1 and now just recently went to zero. So the amount of treatments that I received was more than we were expecting and that was so obnoxious. I will tell you, God has tested our faith, and patience like crazy with this whole experience. Sometimes to the point where its was like "ok, can we have a break please, why can't it all just be done?" and actually it got to be so annoying at times that it became a little humorous how things just were not going the way they needed to. But we are and were quickly reminded that God has a plan and his plan is perfect.
My last treatment was such a weird feeling. Like I still can't believe I am done. It was the best feeling walking out of the doctors office knowing I was never going back literally. Mike and I moved the day after to Kansas City, Missouri. I got my port out right after I was done with my treatment. We finished everything in just the nick of time. It was kind of a crazy whirlwind but it was good to get it all done. I am so happy my port is gone. I hated that thing. Really it was just annoying and would bug me, but it did save my veins thats for sure. Anyways, It was a good day to be done with everything and to be moving on with our lives. They made me ring the cancer bell. I didn't want to but they wanted me too so I did and it was awkward haha.
We moved to Missouri because Mike is attending medical school. So I will be doing my followup visits here with a new doctor. The follow up visits just consist of me getting my blood drawn every month for however long, we will see what he says, and then from there Im pretty much done with this whole thing. So yeah thats about all it is. Nothing too exciting really. Just hoping that my levels stay down in the negative range and for some rare reason they won't spike back up.
When we found out that we had to terminate our pregnancy, we went back and forth wondering if we should name our little boy. We kinda felt weird about it and decided we weren't going to (we were in a really weird place emotionally, mentally and physically). A few months after, the subject would somehow be brought up between Mike and I on a few occasions and we both just had a really strong feeling that our baby wanted to be named. We went through our list of names we were thinking about for him and we decided his name was Jackson. Ever since we have given him a name, we have felt almost a big relief. It was a weird but awesome feeling. We are so happy we named him. It feels good and it feels right.
There is not a day that goes by (literally) where I do not think about Jackson. I wonder what he is doing all the time. I still feel him near when I'm thinking about him, or having a day where I need a reminder that he is ok and everything happens for a reason. We love him so much it has been an incredible experience to feel how much love a parent has for their child. The saying, "Families can be together forever" has a whole new meaning to me now. I have always believed that but now it just has so much more meaning. I am so grateful I know that it is possible for this to happen. That when we die we will still be with our families. How could something so great, like your family, have an end? We find a lot of comfort knowing that our little Jackson is with his relatives that have passed on and we know that he is loved and being taken care of for sure. I know he is happy. I know whatever he is doing over there is way more important than being here physically with us. We can't wait for the day we will be reunited with him. That will be a very happy day.
We just want to say thank you to everyone. All the kind words, the amount of thoughts and prayers have been amazing. We are so appreciative of it. We know that your prayers and our prayers were heard and were answered. Thank you so much. The amount of love and kindness has been amazing.We couldn't have done it without you all.
We know that things do happen for a reason. We know that we probably won't understand why this had to happen to us in this life or at this time. We trust God and the plan he has for us. He has never failed us, he always knows best. We have learned and have grown immensely with this whole experience and will be forever grateful for that. Thank you again to everyone who has been there and supported us through this really hard time in our life we love you all! Also thanks for reading our really long blog posts! :)
Now off to our new exciting chapter in life in Kansas City, Missouri..wish us luck! ;)
Mike & Amy
So our last blog post talked about how I had to switch treatments. These treatments happened every other week so I had two treatments a month. The first few treatments really didn't bother me. It was the usual feeling tired and feeling just a little "off" but then about the 3rd or 4th treatment I felt the nausea. I felt like I just wanted to lay in bed and not do anything. With some treatments I wanted to eat every second and with others I wanted to vomit just when thinking about food. I never really knew how my body was going to react with every treatment because something would be different every time so that was actually really annoying. It also got to the point where certain smells, like alcohol prep pads, or even the thought of me getting treatments made me sick. Feeling my port or looking at it was something else that made me just feel kinda disgusted. It was just a weird thing.
My HCG levels, which are my tumor marker, decided to be really stubborn at the end. The goal was for it to hit negative which is considered 3 or lower. At the end my levels went from 5 to 4 to 4 again and then finally fell to a 1 and now just recently went to zero. So the amount of treatments that I received was more than we were expecting and that was so obnoxious. I will tell you, God has tested our faith, and patience like crazy with this whole experience. Sometimes to the point where its was like "ok, can we have a break please, why can't it all just be done?" and actually it got to be so annoying at times that it became a little humorous how things just were not going the way they needed to. But we are and were quickly reminded that God has a plan and his plan is perfect.
My last treatment was such a weird feeling. Like I still can't believe I am done. It was the best feeling walking out of the doctors office knowing I was never going back literally. Mike and I moved the day after to Kansas City, Missouri. I got my port out right after I was done with my treatment. We finished everything in just the nick of time. It was kind of a crazy whirlwind but it was good to get it all done. I am so happy my port is gone. I hated that thing. Really it was just annoying and would bug me, but it did save my veins thats for sure. Anyways, It was a good day to be done with everything and to be moving on with our lives. They made me ring the cancer bell. I didn't want to but they wanted me too so I did and it was awkward haha.
We moved to Missouri because Mike is attending medical school. So I will be doing my followup visits here with a new doctor. The follow up visits just consist of me getting my blood drawn every month for however long, we will see what he says, and then from there Im pretty much done with this whole thing. So yeah thats about all it is. Nothing too exciting really. Just hoping that my levels stay down in the negative range and for some rare reason they won't spike back up.
When we found out that we had to terminate our pregnancy, we went back and forth wondering if we should name our little boy. We kinda felt weird about it and decided we weren't going to (we were in a really weird place emotionally, mentally and physically). A few months after, the subject would somehow be brought up between Mike and I on a few occasions and we both just had a really strong feeling that our baby wanted to be named. We went through our list of names we were thinking about for him and we decided his name was Jackson. Ever since we have given him a name, we have felt almost a big relief. It was a weird but awesome feeling. We are so happy we named him. It feels good and it feels right.
There is not a day that goes by (literally) where I do not think about Jackson. I wonder what he is doing all the time. I still feel him near when I'm thinking about him, or having a day where I need a reminder that he is ok and everything happens for a reason. We love him so much it has been an incredible experience to feel how much love a parent has for their child. The saying, "Families can be together forever" has a whole new meaning to me now. I have always believed that but now it just has so much more meaning. I am so grateful I know that it is possible for this to happen. That when we die we will still be with our families. How could something so great, like your family, have an end? We find a lot of comfort knowing that our little Jackson is with his relatives that have passed on and we know that he is loved and being taken care of for sure. I know he is happy. I know whatever he is doing over there is way more important than being here physically with us. We can't wait for the day we will be reunited with him. That will be a very happy day.
We just want to say thank you to everyone. All the kind words, the amount of thoughts and prayers have been amazing. We are so appreciative of it. We know that your prayers and our prayers were heard and were answered. Thank you so much. The amount of love and kindness has been amazing.We couldn't have done it without you all.
We know that things do happen for a reason. We know that we probably won't understand why this had to happen to us in this life or at this time. We trust God and the plan he has for us. He has never failed us, he always knows best. We have learned and have grown immensely with this whole experience and will be forever grateful for that. Thank you again to everyone who has been there and supported us through this really hard time in our life we love you all! Also thanks for reading our really long blog posts! :)
Now off to our new exciting chapter in life in Kansas City, Missouri..wish us luck! ;)
Mike & Amy
Friday, March 11, 2016
Yep, It's Another Update!
Mike said we should update the blog and my response was, "I don't want to update it until I have good news". But here I am updating all of you. I am a little late on this update because I didn't know if I was going to do it or not, but I decided I better do it. Things have been going on that some might want to know, I don't know, I do this mostly for our families and friends that are far away and that we don't see often enough to keep them updated.
So as you know, from our last blog post, I started the chemo medication called Methotrexate. This was just a weekly IM injection and after a few of those it really didn't bother me anymore. I use to be terrified of needles, and this experience has literally cured me from that fear. Anyways the Methotrexate really just made me tired and thats really the only side effect. Other then there were somedays I did feel just a little out of it. Every week they would draw my blood and look where my HCG levels were. The HCG levels are my tumor marker and the goal is to have them reach zero. I was told there would be 8 rounds of the methotrexate at the least until my levels hit zero. Well as lucky as I have been through all of this my levels decided to plateau at about 2500 and I was on round 7 when this happened. Pretty much my body became resistant to the methotrexate and it just wasn't working as well as it needed to be. They like to see at least a 10% drop in my levels every week and mine were not doing that. We knew that this could be a possibility where I would have to change up the chemo. At this point, yes it was frustrating but at the same time I feel like "I don't care what I have to do, I just want to be done", type of feeling.
My oncologist referred me to another oncologist because he is only in Utah Valley once a week and he wanted someone who could be there more often if I needed anything. We LOVED Dr Soisson so this was sad. But we were referred to Dr Rich. And guess what? We Love him too!! (Side note: we have been beyond blessed with every single doctor we have met, we have loved them all and they have all been so nice and have really cared about my care. Its been amazing!) The first time we met with Dr Rich he literally talked to us for like an hour and a half. Just making sure we felt comfortable and answered all our questions, told us many stories, he's just a great guy. We feel very comfortable with him and know he really wants the best for us.
So I have started a new chemo medication, it is called Actinomycin or Dactinomycin or for short we just call it ACT-D. This medication is obviously stronger than the Methotrexate. It has to be administered through IV but if the medication leaks out of the IV at all it can be very damaging to whatever it touches. They call it chemo burn. So Dr Rich said the best thing to do is either get a PICC line or a Port. He recommended either of them, but was more for the Port. Mike and I had already researched all of this so we knew It would be best to do either the port or PICC line as well. We decided that the Port would be best. The port is placed right under my skin and there is a catheter that goes directly to my superior vena cava (largest vein dumping right into the heart). They can administer the medication through it safely and they can also draw blood from it. So Its actually really nice because it literally is saving my veins from all the poking they have been through. So Anyways I got the port placed and had my first round of chemo with it and it was really pretty awesome I think everyone needs a port! :)
Dr Rich also wanted me to get a CT scan and MRI to make sure again that nothing has spread outside of my uterus. He wanted to know exactly what we were dealing with which was actually a big relief because we were both wondering if things were still ok. All the scans came back normal and nothing has spread which is great news. I also had blood work done to make sure my liver was ok and that my blood counts were all good, and everything was good!
With this new medication I am more likely to have more side effects. The biggest one is that I could be more sick with this. I had my first round already as I have mentioned and I have been good so far. Thanks to all the anti nausea meds they have given me. My hair will continue to thin but I shouldn't lose all of it and I have continued to be tired and just kind of out of it sometimes. I receive the medication every other week, and then on the off weeks I meet with either Dr Rich or his NP to make sure everything is going ok and to have my blood work drawn again checking the same things as mentioned previously. They are keeping a good eye on me and really want to make this experience as comfortable as it possibly can be.
Mike and I are doing good!! We try really hard to stay positive and to keep busy. We have many things planned and many changes coming our way that make it a little easier to get our minds off of the situation we are in. Even though there are many times we look at our life at think "What in the World?" It really is the most bizarre situation ever and never in our life would we have thought that all this would happen from just trying to have a baby. There are many times where we just sit and laugh at everything that is happening because laughing is better then crying. We know that things could be much worse and that people are going through really hard times in there lives right now and ours isn't nearly as hard as theres might be. This has all been a really humbling experience. Siting in the room getting my treatment with so many others that are literally fighting for their lives was an eye opener. I am grateful that what I have is pretty much 100% curable and that I know that things will all be ok in the end and I know I will be able to move on and live my life. We know that one day we will be able to look back at this experience and be able to say that it was all worth it. But until then we take one day at a time, one dr visit at a time and keep on keeping on!
I have been thinking about all that we have been through and all of the things we have actually gained from this experience. First and most importantly we gained our little baby who will be our little guardian angel and who will forever be apart of our family. I have gained a stronger connection and relationship with Mike. Not that our relationship before was bad, but it has grown so much! I will forever be grateful for that. We have both gained a stronger relationship with our Heavenly Father an our Savior. These are just a few examples of what we have gained from this experience. Whenever I start feeling down and feeling like "why me", I always try to think of the positive and what I have learned and gained from this experience. We can always learn something from every situation in our lives, even the situations and trials that seem so terrible at times, we are always learning and always progressing thats what is so awesome about this life!
We love all of you and are so grateful for all the kind words and support we have received. We will forever be grateful for the generosity and kindness of those around us!
Mike & Amy
So as you know, from our last blog post, I started the chemo medication called Methotrexate. This was just a weekly IM injection and after a few of those it really didn't bother me anymore. I use to be terrified of needles, and this experience has literally cured me from that fear. Anyways the Methotrexate really just made me tired and thats really the only side effect. Other then there were somedays I did feel just a little out of it. Every week they would draw my blood and look where my HCG levels were. The HCG levels are my tumor marker and the goal is to have them reach zero. I was told there would be 8 rounds of the methotrexate at the least until my levels hit zero. Well as lucky as I have been through all of this my levels decided to plateau at about 2500 and I was on round 7 when this happened. Pretty much my body became resistant to the methotrexate and it just wasn't working as well as it needed to be. They like to see at least a 10% drop in my levels every week and mine were not doing that. We knew that this could be a possibility where I would have to change up the chemo. At this point, yes it was frustrating but at the same time I feel like "I don't care what I have to do, I just want to be done", type of feeling.
My oncologist referred me to another oncologist because he is only in Utah Valley once a week and he wanted someone who could be there more often if I needed anything. We LOVED Dr Soisson so this was sad. But we were referred to Dr Rich. And guess what? We Love him too!! (Side note: we have been beyond blessed with every single doctor we have met, we have loved them all and they have all been so nice and have really cared about my care. Its been amazing!) The first time we met with Dr Rich he literally talked to us for like an hour and a half. Just making sure we felt comfortable and answered all our questions, told us many stories, he's just a great guy. We feel very comfortable with him and know he really wants the best for us.
So I have started a new chemo medication, it is called Actinomycin or Dactinomycin or for short we just call it ACT-D. This medication is obviously stronger than the Methotrexate. It has to be administered through IV but if the medication leaks out of the IV at all it can be very damaging to whatever it touches. They call it chemo burn. So Dr Rich said the best thing to do is either get a PICC line or a Port. He recommended either of them, but was more for the Port. Mike and I had already researched all of this so we knew It would be best to do either the port or PICC line as well. We decided that the Port would be best. The port is placed right under my skin and there is a catheter that goes directly to my superior vena cava (largest vein dumping right into the heart). They can administer the medication through it safely and they can also draw blood from it. So Its actually really nice because it literally is saving my veins from all the poking they have been through. So Anyways I got the port placed and had my first round of chemo with it and it was really pretty awesome I think everyone needs a port! :)
Dr Rich also wanted me to get a CT scan and MRI to make sure again that nothing has spread outside of my uterus. He wanted to know exactly what we were dealing with which was actually a big relief because we were both wondering if things were still ok. All the scans came back normal and nothing has spread which is great news. I also had blood work done to make sure my liver was ok and that my blood counts were all good, and everything was good!
With this new medication I am more likely to have more side effects. The biggest one is that I could be more sick with this. I had my first round already as I have mentioned and I have been good so far. Thanks to all the anti nausea meds they have given me. My hair will continue to thin but I shouldn't lose all of it and I have continued to be tired and just kind of out of it sometimes. I receive the medication every other week, and then on the off weeks I meet with either Dr Rich or his NP to make sure everything is going ok and to have my blood work drawn again checking the same things as mentioned previously. They are keeping a good eye on me and really want to make this experience as comfortable as it possibly can be.
Mike and I are doing good!! We try really hard to stay positive and to keep busy. We have many things planned and many changes coming our way that make it a little easier to get our minds off of the situation we are in. Even though there are many times we look at our life at think "What in the World?" It really is the most bizarre situation ever and never in our life would we have thought that all this would happen from just trying to have a baby. There are many times where we just sit and laugh at everything that is happening because laughing is better then crying. We know that things could be much worse and that people are going through really hard times in there lives right now and ours isn't nearly as hard as theres might be. This has all been a really humbling experience. Siting in the room getting my treatment with so many others that are literally fighting for their lives was an eye opener. I am grateful that what I have is pretty much 100% curable and that I know that things will all be ok in the end and I know I will be able to move on and live my life. We know that one day we will be able to look back at this experience and be able to say that it was all worth it. But until then we take one day at a time, one dr visit at a time and keep on keeping on!
I have been thinking about all that we have been through and all of the things we have actually gained from this experience. First and most importantly we gained our little baby who will be our little guardian angel and who will forever be apart of our family. I have gained a stronger connection and relationship with Mike. Not that our relationship before was bad, but it has grown so much! I will forever be grateful for that. We have both gained a stronger relationship with our Heavenly Father an our Savior. These are just a few examples of what we have gained from this experience. Whenever I start feeling down and feeling like "why me", I always try to think of the positive and what I have learned and gained from this experience. We can always learn something from every situation in our lives, even the situations and trials that seem so terrible at times, we are always learning and always progressing thats what is so awesome about this life!
We love all of you and are so grateful for all the kind words and support we have received. We will forever be grateful for the generosity and kindness of those around us!
Mike & Amy
Saturday, January 16, 2016
Update
We have had many people asking us questions and people who have been interested in what we are doing now and what the future holds for us so we have decided to give an update to those who want to know!
In our first post, when we first found out what was going on, I mentioned that there maybe would have to be some chemo that was done. The reason for this is that once you get the molar pregnancy out, there is still a possibility where there are still some cells in there that are multiplying and spreading which pretty much means you now have cancer. So after my procedure they told me that they were going to check my HCG levels weekly to make sure they were going down. If they ever plateaued or went up then we would know that there was still something in there that needed to be taken care of and this is where the chemo would take place.
In our first post, when we first found out what was going on, I mentioned that there maybe would have to be some chemo that was done. The reason for this is that once you get the molar pregnancy out, there is still a possibility where there are still some cells in there that are multiplying and spreading which pretty much means you now have cancer. So after my procedure they told me that they were going to check my HCG levels weekly to make sure they were going down. If they ever plateaued or went up then we would know that there was still something in there that needed to be taken care of and this is where the chemo would take place.
My HCG levels started going down drastically in the beginning. The day of the procedure they were around 500,000. A few days later they were 44,000 and then the weeks after that they were as follows, 11,000 10,000, 11450. So when I saw that they only dropped from 11,000 to 10,000 both Mike and I were a little worried, but they said that they at least dropped so that was ok and they wanted me to get my blood drawn the next week to see if they would drop or not. Well as you can see they actually went up that next week. I am able to see all my labs that are drawn online before the Drs office even calls me which is great, but I was looking every 15 mins that day to see if they had dropped. When I saw the results I kind of felt like, "Of course they would go up, this is how my life is right now, one bad thing after the other". It sucked knowing I was going to have to do chemo and I felt like this process was just going to be even longer and was going to be drug out.
Later that day my OB called and pretty much said my levels have gone up, that he had already talked to Dr Soisson (the GYN oncologist) I would be seeing him soon and I will also be having a CT scan tomorrow to see if the cells have spread at all. I was kind of in shock at how quickly everything was going to be moving, but at the same time I was SO grateful they were being efficient and getting things taken care of. The next day I got my CT scan and the day after I was in seeing Dr Soisson.
The visit with Dr. Soisson went so well! We really like him. He is kind of a scatter brain but its because his brain is literally going 100 mph. You can tell he is very smart. He walked in the room and said "Amy I finally get to meet you, Ive heard all about you for so long". This is true! When we found out about the situation going on Dr. Soisson was contacted and I was supposed to meet with him the day of my procedure. So he was informed the whole time of my situation. When he heard my levels went up he told my OB he was not surprised because of how long the Mole was in there and how big it was he was not surprised that my HCG levels went up. He went over everything with us and told us what needed to happen. He first told us that the cells have not spread outside of my uterus which is really great news! He then told us that I would need to be started on chemo right away. The Chemo that they will be giving me is called methotrexate. This medication is very mild. I will not get sick from it or lose my hair. The only thing that could really happen is that my hair can start to thin. He said that what I have is called Gestational trophoblastic disease. This "disease" is very treatable, like pretty much 100% treatable. My chances of this happening again have gone up to a 1% chance, where before the chances of this happening was a .001% chance. So you know...the chance is low but it is still higher than it was.
I then received my first round of the chemo medication. They are administering the medication via injection. So I get to get a great big shot in my bum for the next 8 weeks. So I got one shot and have 7 more to go! And I have felt great and fine and have had no symptoms from the chemo. One thing that we were told and also why I felt like things were just going to be drug out, is if I had to do the chemo then we would have to wait a year after my levels hit 0 to start trying to get pregnant again. A year really doesn't seem that long especially when your looking at your whole life, but a year just waiting to try and have another baby felt like torture to me and it really just felt like a really long time. Dr Soisson informed us that when my levels hit 0 they will need to stay at zero for 3 months and then we can start trying to get pregnant again. This was probably the best news for us. He says that the whole waiting a year thing was old research and old news, that all we need to do was wait 3 months. Things are finally starting to look up and we are feeling really optimistic and positive about the future.
This whole experience has been rough to be honest. It has been a learning and growing experience for sure. There are days that are harder then others. Days where I miss our little guy in my belly. But there are more good days then bad. Both of us are reminded every single day that it is all going to be OK. The number of times we have felt our little guys spirit with us is uncountable. I KNOW he is with us and surrounds us everyday and I know that we will see him again. I know that we have a Heavenly Father who loves us and really wants what is best for us. It will always be OK. It will always work out! I have never been so grateful for my faith. I do not know how people get through trials without our heavenly father. The only way we are making it through and doing so well is by many, many prayers the support of our friends and family and having each other. Trials really just suck, but they have to happen. We have to grow and we have to learn. We may never understand why this had to happen to us, but we know it had to and we know it will all be OK. It doesn't make it easy but it makes it bearable. One of my favorite quotes that my mother in law shared with us by Joseph B Wirthlin is,
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
I believe this very much! I know that God is good and has a reason for everything. He never leaves our side and will always bless us more than we can ever imagine!
This is all that is going on right now! We are just healing from all that has happened and trying to stay positive. Just waiting for these levels to drop! We are grateful for all of you! We are so grateful for the many kind words and the many prayers in our behalf. Thank you so much!! We love you!
Mike & Amy
Later that day my OB called and pretty much said my levels have gone up, that he had already talked to Dr Soisson (the GYN oncologist) I would be seeing him soon and I will also be having a CT scan tomorrow to see if the cells have spread at all. I was kind of in shock at how quickly everything was going to be moving, but at the same time I was SO grateful they were being efficient and getting things taken care of. The next day I got my CT scan and the day after I was in seeing Dr Soisson.
The visit with Dr. Soisson went so well! We really like him. He is kind of a scatter brain but its because his brain is literally going 100 mph. You can tell he is very smart. He walked in the room and said "Amy I finally get to meet you, Ive heard all about you for so long". This is true! When we found out about the situation going on Dr. Soisson was contacted and I was supposed to meet with him the day of my procedure. So he was informed the whole time of my situation. When he heard my levels went up he told my OB he was not surprised because of how long the Mole was in there and how big it was he was not surprised that my HCG levels went up. He went over everything with us and told us what needed to happen. He first told us that the cells have not spread outside of my uterus which is really great news! He then told us that I would need to be started on chemo right away. The Chemo that they will be giving me is called methotrexate. This medication is very mild. I will not get sick from it or lose my hair. The only thing that could really happen is that my hair can start to thin. He said that what I have is called Gestational trophoblastic disease. This "disease" is very treatable, like pretty much 100% treatable. My chances of this happening again have gone up to a 1% chance, where before the chances of this happening was a .001% chance. So you know...the chance is low but it is still higher than it was.
I then received my first round of the chemo medication. They are administering the medication via injection. So I get to get a great big shot in my bum for the next 8 weeks. So I got one shot and have 7 more to go! And I have felt great and fine and have had no symptoms from the chemo. One thing that we were told and also why I felt like things were just going to be drug out, is if I had to do the chemo then we would have to wait a year after my levels hit 0 to start trying to get pregnant again. A year really doesn't seem that long especially when your looking at your whole life, but a year just waiting to try and have another baby felt like torture to me and it really just felt like a really long time. Dr Soisson informed us that when my levels hit 0 they will need to stay at zero for 3 months and then we can start trying to get pregnant again. This was probably the best news for us. He says that the whole waiting a year thing was old research and old news, that all we need to do was wait 3 months. Things are finally starting to look up and we are feeling really optimistic and positive about the future.
This whole experience has been rough to be honest. It has been a learning and growing experience for sure. There are days that are harder then others. Days where I miss our little guy in my belly. But there are more good days then bad. Both of us are reminded every single day that it is all going to be OK. The number of times we have felt our little guys spirit with us is uncountable. I KNOW he is with us and surrounds us everyday and I know that we will see him again. I know that we have a Heavenly Father who loves us and really wants what is best for us. It will always be OK. It will always work out! I have never been so grateful for my faith. I do not know how people get through trials without our heavenly father. The only way we are making it through and doing so well is by many, many prayers the support of our friends and family and having each other. Trials really just suck, but they have to happen. We have to grow and we have to learn. We may never understand why this had to happen to us, but we know it had to and we know it will all be OK. It doesn't make it easy but it makes it bearable. One of my favorite quotes that my mother in law shared with us by Joseph B Wirthlin is,
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
I believe this very much! I know that God is good and has a reason for everything. He never leaves our side and will always bless us more than we can ever imagine!
This is all that is going on right now! We are just healing from all that has happened and trying to stay positive. Just waiting for these levels to drop! We are grateful for all of you! We are so grateful for the many kind words and the many prayers in our behalf. Thank you so much!! We love you!
Mike & Amy
Monday, December 21, 2015
Our Little Baby Part 2
Mike and I have had a very interesting, hard, crazy week. It is really weird how things can change so quickly in just a short amount of time. I will warn you before you read any further that this post is long!! Also I (Amy) wrote the first 4 paragraphs and Mike wrote everything else so hopefully it won't be too confusing.
On Tuesday Dec 15th I got home from work and one of my friends came over to just talk and to hang out. Mike called me shortly after she got there and asked if I had taken my blood pressure yet. I told him no and that I will just do it later. Jessica, my friend said no lets just do it now. I really didn't want to take my blood pressure because it really stresses my out every time that I have to take it. I just wanted it to be ok. So we took it with the little blood pressure machine that we had bought and my blood pressure was out of control high. So then we took it again to make sure and it was still super high. Just to make sure the machine was working right we then took it manually twice and both times is was very high. The doctor said if my blood pressure ever got higher then 150/100 I need to go into the hospital. My blood pressure this night was about 162/108. It was out of control. I called Mike and told him and we decided it was best to head on over to the Emergency room. (Thanks to Jessica for being there, we love you!)
We got to the emergency room and they hooked me up to the blood pressure machine, checking my heart rate and everything else..haha My blood pressure was all over the place. It would get around a good range and then about 15 minutes later it would spike way back up and all I was doing was laying down. It was really such a weird feeling because I felt completely normal the whole time. I did not have any symptoms of high blood pressure at all so to have my blood pressure be so crazy was really weird for me. In the situation I was in with the pregnancy, we knew this was a risk we just were not expecting it to happen within 4 days of finding out everything. Anyways, back to the emergency room, we saw the doctor and he pretty much was in shock that I had a Mole and a normal fetus inside of me. He really didn't know what do to so he called the on call OB. The OB was kind of the same, he told the ER doc to call maternal fetal medicine and see what the best thing was to do. We spent like 5 plus hours in the ER just waiting for the Doctors to communicate back and forth and to see what was the next step and what was best for us. In the end they decided it would be best for us to go up and be admitted to the hospital in Murray, IMC.
The OB doctor came down and talked to us about the situation and why they have decided this would be the best place for me. He pretty much said with how your blood pressure is right now, its just going to get worse and preeclampsia is going to progress really quickly because of the situation. Molar pregnancies are complicated, but it makes it even more complicated to have a Mole and a fetus. So he pretty much told us they want us up at IMC because they are better equipped with everything that we will need for this situation. He said after talking to the maternal fetal medicine doctor and going through all the possible options, they felt like we would have to terminate our pregnancy in order to keep me alive and for me to later on in life be able to have kids. When we heard this, we were in shock, we were numb and had no idea what to think. Shortly after this conversation happened we were discharged from the ER and they let us drive to IMC. We stopped by our house to grab a few things and then just held each other and cried for a few minutes and then we were on our way.
The drive up we were really quiet, I think we were just both trying to process what was actually going on and how it all just happened so quickly. We got to the hospital and it took me awhile to get out of the car. I just didn't want to go in, I knew when I went in this whole pregnancy was going to be over and it was really hard to handle. Finally we got in there, got into our room and I was hooked back up to the blood pressure machine. My blood pressure was still crazy and all over the place. They were planning on doing the procedure the next morning and so we decided well we should probably let our families know what is going on. Mike called both our parents and let them know, which was really hard and between me getting poked and IVs started and the blood pressure going it was just kind of crazy. The resident came in and talked to us about everything and what was going to happen and then things slowed down a little bit and we decided to get some sleep. About 30 mins later my cute parents walked into the room. We talked to them for a bit and then they decided to go and told us they would be back the next day. The hospital decided to move me up to another floor and thats where we stayed for the next 4 days.
We maybe got an hour of sleep that night because our minds were running wild. It was about 4 am when we got to the room and we didn't see the Doctor early in the morning like we had expected. We met Dr. Heuser at 11 am and she told us they were going to hold off for a bit to make sure they were prepared. We were relieved that we had some extra time to try and process all that was happening. At this point Amy's blood pressure had started to somewhat come down. I asked if this was a good sign and if we really had to proceed. She explained that preeclampsia is not very well understood but what they do know is it always gets worse and not better. She said because Amy's blood pressure was so high and unstable this early on they feared it would become fatal to her very quickly. She said at this point it had just become too dangerous to continue. This was very hard to hear considering we were still holding on to some sort of hope but at the same time this was the fourth doctor that had come to this same conclusion. She said she had been talking to GYN oncology and calling around to any physicians that may have any experience with this type of pregnancy and that is why it took her so long to come and see us. She also said that it would most likely take place Friday (this was Wednesday).
We almost felt it was torture at the time sitting there in the hospital waiting for this all to happen. Once we realized all the preparations they had to make before hand to make sure Amy was safe and that they would be able to keep her uterus we understood why we had to wait. This was probably the hardest day for us. We met a few of the other Maternal Fetal Medicine doctors there who all agreed that this needed to happen. As hard as it was to hear it was reassuring to know there was no conflicting opinions. Wednesday night Dr. Jones, our regular OB, came to see us. We were so happy to see him come through that door. Although every single doctor we met was extremely nice and sympathetic to our situation we knew Dr. Jones knew us and our situation. We had seen about 10 doctors at this point and were just happy to see a familiar face. Dr. Jones has known Amy for a long time and is a good family friend. We knew that we could talk to Dr. Jones not only about the medical aspect but also the spiritual and emotional aspect of what was happening. He stayed and talked with us for about 45 minutes about everything that was happening. He had the same opinion as all the other physicians that this is what needed to happen. We talked about just everything with him and felt so much better about the situation once we had spoken to him. It was after speaking to him we realized how much of a hand our Heavenly Father was really playing in all of this.
Dr. Jones was amazed at how fast everything happened. He said there was a series of events that shows that our Heavenly Father was watching out for us. First we decided to do the screening. He said most patients don't do it for whatever reason. Second he was amazed that we got into maternal fetal medicine as fast as we did. He said his patients in the same position we were (with an abnormal screening) were waiting three weeks to get in and see maternal fetal medicine. Because of a cancellation we were able to get an appointment in two days. Third we were actually taking Amy's blood pressure at home. Fourth he was very happy they transferred us to IMC because AF and UVRMC weren't equipped to handle this situation. When we last saw Dr. Jones at our 16 week appointment (Dec 1st) Amy's blood pressure was fine. Our next appointment wasn't scheduled until the beginning of January. If we hadn't of done the quad screen there would have been no reason for us to monitor Amy's blood pressure. Normal preeclampsia doesn't start until late in the third trimester. With molar pregnancies you're at a high risk for it to set in early. So we would of never known she had high blood pressure because she wasn't experiencing any physical symptoms. Who knows what could of happened if we didn't know to keep an eye on her blood pressure.
Wednesday night we had some more family come and see us which was nice. It was easier when we could keep our minds off of all that was going on. We went to sleep that night and able to actually sleep a few hours. Thursday was probably our best day emotionally since we had gotten to the hospital. In the morning we met two more doctors who did a procedure to begin dilating Amy's cervix. They as well reaffirmed how sorry they were and that this really was what needed to happen. Everyone of the doctors, nurses, and techs were so loving and caring. Each of them we could tell genuinely cared about us and what we were going through not just pushing us through. After that was done we went back to our room and most of the rest of the day was just people coming to see us. We were so grateful that so many of our family members and friends came to visit and support us. We also received so many messages, calls, and messages through our families members we are so grateful for. We truly felt all our your love and prayers for us and don't know how we would have made it through without them. After our visitors left we tried to sleep knowing Friday would be a whirl wind of a day.
Friday we woke up and tried to stay busy not thinking about all that was going to take place. We felt like after the procedure we would be an absolute mess. We had a few visitors then Amy's parents came by. Amy's dad gave her another blessing that was so tender and powerful it touched on the things that Amy and I were worried about the most and helped put us all at ease. As the time for surgery approached Dr. Heuser came in to talk to us. She is so awesome. She explained all the risks and concerns they had. She explained all the extra equipment available in the OR that she had because they were extremely worried about bleeding. She said molar pregnancies bleed a lot and sometimes the uterus will bleed uncontrollably and at that point they would have to perform a hysterectomy. They had been telling us this for a few days but at that point it's hard to hear because our chances of having kids could be gone because of this dumb mole. She said she would do everything possible to keep her uterus and explained all the extra devices they had to try if it started to really bleed. She also said she brought Dr. Gibbins in from the University of Utah to help as well as having a GYN oncologist there available if she needed him.
At this point we knew Amy was in good hands our biggest concern was our little boy. Even though we knew this had to be done we felt so bad for our little guy. We wanted to make sure he was respected and loved through this all with as much love as we would give him. As Dr. Heuser was getting ready to leave she again expressed how sorry she was and that she would take good care of both of them. This helped put us as ease a little bit then Dr. Gibbins came in. This was our first time meeting Dr. Gibbins. She had a special spirit about her when she walked in the room. She met us and said that Dr. Heuser had brought her in because of the difficulty with this procedure and the fact that none of them had dealt with this exact situation before. She began to discuss the risks again and the possibility of a hysterectomy. After she was all done she looked at Amy and began to cry. She said I just want you to know that our teams hearts break for you. We know this is a terrible thing to have to go through and we know how hard this must be. Then she said but I will tell you, if any of us were in your situation we would have to do the same thing but I'm so sorry. When she walked out of the room we knew that Amy and our little boy were in the best possible hands. We knew they would be respectful of him and love him as we did.
After that they took Amy down to surgery. They said total if all went perfect she would be out 1 hour 30 mins to 1 hour 45 mins with prep and all. After she had been down there about an hour they called to let us know it would be a little longer. Then we heard nothing for an hour then another 30 mins then another 30 mins. We began to get worried now that she had been in there 2 and a half hours that she must be bleeding and were worried. Luckily Amy's parents were there to keep me company so I didn't go crazy. After 3 hours finally Dr. Heuser came to talk to us. She said all went well. Amy was alive and she still had her uterus which was a huge relief. She said what took so long is Amy's ovary had swelled to about 5 inches in diameter (when it's suppose to be the size of an almond) and was pushing on the cervix which made it hard for them to use the instruments they normally use. They said because of the massive amounts of HCG the mole secretes as well as the normal placenta she gets these giant cysts which swell her ovaries. She said she began to make some calls and ask anyone for any other ideas so that she didn't have to open Amy up. Luckily after awhile someone had an idea that worked and they didn't have to open her up. After recovery she got back to us close to 5 hours after going in. We are so grateful these wonderful ladies took their time and took such great care of Amy.
Once Amy's parents had left and it was just us and Amy was awake enough, we began to talk. We had expected this to be the hardest part of this whole thing. We figured right after the surgery would be when reality set in that our little guy was gone. We both felt something so different though. Amy and I felt this overwhelming sense of joy. It was so profound it really overcame all the sadness. We had felt our boys happiness all along but never this intense. Whenever we thought about our little guy or prayed we felt how happy he was. We could feel his wonderful, tender, happy little spirit there with us. We kept looking at each other in amazement. It was so strong we couldn't deny how we felt. We felt that Heavenly Father gave us this as confirmation that he was in control and our boy was very happy with where he was at. It truly was amazing because at the time we thought would be the worst was actually the best we had felt this whole time.
We are so grateful for all the love and support we have received. We have never felt so overwhelmed by the love, support, and sincerity of the people around us. You are all so wonderful and we don't know what we would do without you! Thank you! Truly we don't think you'll understand how appreciated you were this week and continue to be. We felt your love and prayers and that is what helped us make it. Thank you!
We really want everyone to feel like they can talk to us about our situation and our experience. We know that those on the outside looking in may not know what to say, or what to do, but please just don't feel like you can't talk to us or say anything. We are both more than happy to answer any questions people may have. If you are pregnant or have kids or whatever and you feel we will be sad or offended by this, we want you to know we aren't and will never be. Being pregnant and having kids is the most amazing gift and blessing our heavenly father has given to us. Please know we are genuinely happy for you, we love you and want all the best in the world for you.
Through this whole experience we have seen the hand of the Lord guide us and keep Amy safe. We know that for some reason this all was suppose to happen. For some reason our little guy needed to be back up with his Heavenly Father and we needed to go through this trial. This pregnancy we experienced happiness we didn't know was possible as well as pain deeper then we had ever felt before. We feel that this will be a life long learning experience for us and that we will understand a little more every year. We know that our Heavenly Father lives and that he is taking care of our little boy now. We know that our savior Jesus Christ died for us so that he could be with us and succor us every step of the way this week and forever. Our savior may be the only one who truly knows how we feel right now and knows exactly what we need. We have felt this as we have been on our knees praying for comfort and peace through this journey. We have an overpowering sense of comfort, peace, and happiness with this whole situation. We are grateful to have the gospel in our life so that we know where to turn for peace. That when we felt so defeated, so vulnerable, and filled with sadness we knew who to look to. Because of our testimony in a Heavenly Father and in our Savior we were consoled when we felt like nothing would make it better. We know that they are there and that they love each and every one of us. They will help us if we turn to them.
We hope everyone has a very Merry Christmas and will remember our Savior at this time. Again we can't say thank you enough to everyone for the support, the texts, the Facebook messages, the phone calls, the visits, etc. We are truly blessed!
Mike & Amy
On Tuesday Dec 15th I got home from work and one of my friends came over to just talk and to hang out. Mike called me shortly after she got there and asked if I had taken my blood pressure yet. I told him no and that I will just do it later. Jessica, my friend said no lets just do it now. I really didn't want to take my blood pressure because it really stresses my out every time that I have to take it. I just wanted it to be ok. So we took it with the little blood pressure machine that we had bought and my blood pressure was out of control high. So then we took it again to make sure and it was still super high. Just to make sure the machine was working right we then took it manually twice and both times is was very high. The doctor said if my blood pressure ever got higher then 150/100 I need to go into the hospital. My blood pressure this night was about 162/108. It was out of control. I called Mike and told him and we decided it was best to head on over to the Emergency room. (Thanks to Jessica for being there, we love you!)
We got to the emergency room and they hooked me up to the blood pressure machine, checking my heart rate and everything else..haha My blood pressure was all over the place. It would get around a good range and then about 15 minutes later it would spike way back up and all I was doing was laying down. It was really such a weird feeling because I felt completely normal the whole time. I did not have any symptoms of high blood pressure at all so to have my blood pressure be so crazy was really weird for me. In the situation I was in with the pregnancy, we knew this was a risk we just were not expecting it to happen within 4 days of finding out everything. Anyways, back to the emergency room, we saw the doctor and he pretty much was in shock that I had a Mole and a normal fetus inside of me. He really didn't know what do to so he called the on call OB. The OB was kind of the same, he told the ER doc to call maternal fetal medicine and see what the best thing was to do. We spent like 5 plus hours in the ER just waiting for the Doctors to communicate back and forth and to see what was the next step and what was best for us. In the end they decided it would be best for us to go up and be admitted to the hospital in Murray, IMC.
The OB doctor came down and talked to us about the situation and why they have decided this would be the best place for me. He pretty much said with how your blood pressure is right now, its just going to get worse and preeclampsia is going to progress really quickly because of the situation. Molar pregnancies are complicated, but it makes it even more complicated to have a Mole and a fetus. So he pretty much told us they want us up at IMC because they are better equipped with everything that we will need for this situation. He said after talking to the maternal fetal medicine doctor and going through all the possible options, they felt like we would have to terminate our pregnancy in order to keep me alive and for me to later on in life be able to have kids. When we heard this, we were in shock, we were numb and had no idea what to think. Shortly after this conversation happened we were discharged from the ER and they let us drive to IMC. We stopped by our house to grab a few things and then just held each other and cried for a few minutes and then we were on our way.
The drive up we were really quiet, I think we were just both trying to process what was actually going on and how it all just happened so quickly. We got to the hospital and it took me awhile to get out of the car. I just didn't want to go in, I knew when I went in this whole pregnancy was going to be over and it was really hard to handle. Finally we got in there, got into our room and I was hooked back up to the blood pressure machine. My blood pressure was still crazy and all over the place. They were planning on doing the procedure the next morning and so we decided well we should probably let our families know what is going on. Mike called both our parents and let them know, which was really hard and between me getting poked and IVs started and the blood pressure going it was just kind of crazy. The resident came in and talked to us about everything and what was going to happen and then things slowed down a little bit and we decided to get some sleep. About 30 mins later my cute parents walked into the room. We talked to them for a bit and then they decided to go and told us they would be back the next day. The hospital decided to move me up to another floor and thats where we stayed for the next 4 days.
We maybe got an hour of sleep that night because our minds were running wild. It was about 4 am when we got to the room and we didn't see the Doctor early in the morning like we had expected. We met Dr. Heuser at 11 am and she told us they were going to hold off for a bit to make sure they were prepared. We were relieved that we had some extra time to try and process all that was happening. At this point Amy's blood pressure had started to somewhat come down. I asked if this was a good sign and if we really had to proceed. She explained that preeclampsia is not very well understood but what they do know is it always gets worse and not better. She said because Amy's blood pressure was so high and unstable this early on they feared it would become fatal to her very quickly. She said at this point it had just become too dangerous to continue. This was very hard to hear considering we were still holding on to some sort of hope but at the same time this was the fourth doctor that had come to this same conclusion. She said she had been talking to GYN oncology and calling around to any physicians that may have any experience with this type of pregnancy and that is why it took her so long to come and see us. She also said that it would most likely take place Friday (this was Wednesday).
We almost felt it was torture at the time sitting there in the hospital waiting for this all to happen. Once we realized all the preparations they had to make before hand to make sure Amy was safe and that they would be able to keep her uterus we understood why we had to wait. This was probably the hardest day for us. We met a few of the other Maternal Fetal Medicine doctors there who all agreed that this needed to happen. As hard as it was to hear it was reassuring to know there was no conflicting opinions. Wednesday night Dr. Jones, our regular OB, came to see us. We were so happy to see him come through that door. Although every single doctor we met was extremely nice and sympathetic to our situation we knew Dr. Jones knew us and our situation. We had seen about 10 doctors at this point and were just happy to see a familiar face. Dr. Jones has known Amy for a long time and is a good family friend. We knew that we could talk to Dr. Jones not only about the medical aspect but also the spiritual and emotional aspect of what was happening. He stayed and talked with us for about 45 minutes about everything that was happening. He had the same opinion as all the other physicians that this is what needed to happen. We talked about just everything with him and felt so much better about the situation once we had spoken to him. It was after speaking to him we realized how much of a hand our Heavenly Father was really playing in all of this.
Dr. Jones was amazed at how fast everything happened. He said there was a series of events that shows that our Heavenly Father was watching out for us. First we decided to do the screening. He said most patients don't do it for whatever reason. Second he was amazed that we got into maternal fetal medicine as fast as we did. He said his patients in the same position we were (with an abnormal screening) were waiting three weeks to get in and see maternal fetal medicine. Because of a cancellation we were able to get an appointment in two days. Third we were actually taking Amy's blood pressure at home. Fourth he was very happy they transferred us to IMC because AF and UVRMC weren't equipped to handle this situation. When we last saw Dr. Jones at our 16 week appointment (Dec 1st) Amy's blood pressure was fine. Our next appointment wasn't scheduled until the beginning of January. If we hadn't of done the quad screen there would have been no reason for us to monitor Amy's blood pressure. Normal preeclampsia doesn't start until late in the third trimester. With molar pregnancies you're at a high risk for it to set in early. So we would of never known she had high blood pressure because she wasn't experiencing any physical symptoms. Who knows what could of happened if we didn't know to keep an eye on her blood pressure.
Wednesday night we had some more family come and see us which was nice. It was easier when we could keep our minds off of all that was going on. We went to sleep that night and able to actually sleep a few hours. Thursday was probably our best day emotionally since we had gotten to the hospital. In the morning we met two more doctors who did a procedure to begin dilating Amy's cervix. They as well reaffirmed how sorry they were and that this really was what needed to happen. Everyone of the doctors, nurses, and techs were so loving and caring. Each of them we could tell genuinely cared about us and what we were going through not just pushing us through. After that was done we went back to our room and most of the rest of the day was just people coming to see us. We were so grateful that so many of our family members and friends came to visit and support us. We also received so many messages, calls, and messages through our families members we are so grateful for. We truly felt all our your love and prayers for us and don't know how we would have made it through without them. After our visitors left we tried to sleep knowing Friday would be a whirl wind of a day.
Friday we woke up and tried to stay busy not thinking about all that was going to take place. We felt like after the procedure we would be an absolute mess. We had a few visitors then Amy's parents came by. Amy's dad gave her another blessing that was so tender and powerful it touched on the things that Amy and I were worried about the most and helped put us all at ease. As the time for surgery approached Dr. Heuser came in to talk to us. She is so awesome. She explained all the risks and concerns they had. She explained all the extra equipment available in the OR that she had because they were extremely worried about bleeding. She said molar pregnancies bleed a lot and sometimes the uterus will bleed uncontrollably and at that point they would have to perform a hysterectomy. They had been telling us this for a few days but at that point it's hard to hear because our chances of having kids could be gone because of this dumb mole. She said she would do everything possible to keep her uterus and explained all the extra devices they had to try if it started to really bleed. She also said she brought Dr. Gibbins in from the University of Utah to help as well as having a GYN oncologist there available if she needed him.
At this point we knew Amy was in good hands our biggest concern was our little boy. Even though we knew this had to be done we felt so bad for our little guy. We wanted to make sure he was respected and loved through this all with as much love as we would give him. As Dr. Heuser was getting ready to leave she again expressed how sorry she was and that she would take good care of both of them. This helped put us as ease a little bit then Dr. Gibbins came in. This was our first time meeting Dr. Gibbins. She had a special spirit about her when she walked in the room. She met us and said that Dr. Heuser had brought her in because of the difficulty with this procedure and the fact that none of them had dealt with this exact situation before. She began to discuss the risks again and the possibility of a hysterectomy. After she was all done she looked at Amy and began to cry. She said I just want you to know that our teams hearts break for you. We know this is a terrible thing to have to go through and we know how hard this must be. Then she said but I will tell you, if any of us were in your situation we would have to do the same thing but I'm so sorry. When she walked out of the room we knew that Amy and our little boy were in the best possible hands. We knew they would be respectful of him and love him as we did.
After that they took Amy down to surgery. They said total if all went perfect she would be out 1 hour 30 mins to 1 hour 45 mins with prep and all. After she had been down there about an hour they called to let us know it would be a little longer. Then we heard nothing for an hour then another 30 mins then another 30 mins. We began to get worried now that she had been in there 2 and a half hours that she must be bleeding and were worried. Luckily Amy's parents were there to keep me company so I didn't go crazy. After 3 hours finally Dr. Heuser came to talk to us. She said all went well. Amy was alive and she still had her uterus which was a huge relief. She said what took so long is Amy's ovary had swelled to about 5 inches in diameter (when it's suppose to be the size of an almond) and was pushing on the cervix which made it hard for them to use the instruments they normally use. They said because of the massive amounts of HCG the mole secretes as well as the normal placenta she gets these giant cysts which swell her ovaries. She said she began to make some calls and ask anyone for any other ideas so that she didn't have to open Amy up. Luckily after awhile someone had an idea that worked and they didn't have to open her up. After recovery she got back to us close to 5 hours after going in. We are so grateful these wonderful ladies took their time and took such great care of Amy.
Once Amy's parents had left and it was just us and Amy was awake enough, we began to talk. We had expected this to be the hardest part of this whole thing. We figured right after the surgery would be when reality set in that our little guy was gone. We both felt something so different though. Amy and I felt this overwhelming sense of joy. It was so profound it really overcame all the sadness. We had felt our boys happiness all along but never this intense. Whenever we thought about our little guy or prayed we felt how happy he was. We could feel his wonderful, tender, happy little spirit there with us. We kept looking at each other in amazement. It was so strong we couldn't deny how we felt. We felt that Heavenly Father gave us this as confirmation that he was in control and our boy was very happy with where he was at. It truly was amazing because at the time we thought would be the worst was actually the best we had felt this whole time.
We are so grateful for all the love and support we have received. We have never felt so overwhelmed by the love, support, and sincerity of the people around us. You are all so wonderful and we don't know what we would do without you! Thank you! Truly we don't think you'll understand how appreciated you were this week and continue to be. We felt your love and prayers and that is what helped us make it. Thank you!
We really want everyone to feel like they can talk to us about our situation and our experience. We know that those on the outside looking in may not know what to say, or what to do, but please just don't feel like you can't talk to us or say anything. We are both more than happy to answer any questions people may have. If you are pregnant or have kids or whatever and you feel we will be sad or offended by this, we want you to know we aren't and will never be. Being pregnant and having kids is the most amazing gift and blessing our heavenly father has given to us. Please know we are genuinely happy for you, we love you and want all the best in the world for you.
Through this whole experience we have seen the hand of the Lord guide us and keep Amy safe. We know that for some reason this all was suppose to happen. For some reason our little guy needed to be back up with his Heavenly Father and we needed to go through this trial. This pregnancy we experienced happiness we didn't know was possible as well as pain deeper then we had ever felt before. We feel that this will be a life long learning experience for us and that we will understand a little more every year. We know that our Heavenly Father lives and that he is taking care of our little boy now. We know that our savior Jesus Christ died for us so that he could be with us and succor us every step of the way this week and forever. Our savior may be the only one who truly knows how we feel right now and knows exactly what we need. We have felt this as we have been on our knees praying for comfort and peace through this journey. We have an overpowering sense of comfort, peace, and happiness with this whole situation. We are grateful to have the gospel in our life so that we know where to turn for peace. That when we felt so defeated, so vulnerable, and filled with sadness we knew who to look to. Because of our testimony in a Heavenly Father and in our Savior we were consoled when we felt like nothing would make it better. We know that they are there and that they love each and every one of us. They will help us if we turn to them.
We hope everyone has a very Merry Christmas and will remember our Savior at this time. Again we can't say thank you enough to everyone for the support, the texts, the Facebook messages, the phone calls, the visits, etc. We are truly blessed!
Mike & Amy
Saturday, December 12, 2015
Our Little Baby
Mike and I found out I was pregnant on Aug 31st 2015 and we were so excited!! There are always many things that go through your mind like miscarriage and if baby is developing ok and so on.. We decided to wait until we had our 12 week appointment to spill the beans to everyone. We had our 12 week appointment and everything looked good with baby so on Halloween we told our family and friends and it was an exciting time. The worst secret ever was keeping from them that I was pregnant, so we were very excited to tell them.
Time went on and at about 15 weeks I had a belly, like you could tell I was pregnant it wasn't really questionable, which I thought was a little interesting since this is my first pregnancy and I wasn't that far along. Everyone else thought it was weird too..many comments on how I look bigger then I should be and things like that. Honestly the comments didn't really bug me at first but after a while I started feeling like I may just be weird and just get huge quickly. I started feeling a little insecure about my baby bump and I tried to just brush it off and keep going, I was just happy baby was healthy and growing. I asked my Dr at my 16 week appointment if I looked huge. He said no to not worry about it, everyone is different and carries differently. He said I am just a small girl and the bump is just showing. I knew my 20 week appointment I would have an ultrasound that would look over the anatomy of baby and would measure him and then they would be able to see if I was measuring further along or if everything was normal. At my 16 week visit we also decided to do testing for spina bifida, hydrocephalus, and down syndrome.
About a week after I got the blood work done, the nurse called and said some of my tests were a little high for down syndrome so they wanted me to be seen by maternal fetal medicine. She said sometimes the test comes back high if you are having twins, you are further along then what you think, or the baby is in fact down syndrome. So we set up an appointment with the perinatologist and luckily they got us right in so we didn't have to wait for a long time to get some answers.
The day of the appointment came and I was a little nervous about what they were going to tell us, but knew that it was better to know what was going on then not. First thing they did was take my weight and blood pressure. My blood pressure was pretty high which was weird for me because my blood pressure has never been high so that worried me but I was pretty nervous as well so I think that may have something to do with it. Then we went and had an ultrasound. The Tech looked at baby and measured everything it was fun to see our little guy, he is always so active and moving all over the whole time. After about 30 mins of that the Dr then came in to discuss with us our lab results and the measurements of the baby. She said that the baby looked perfect and was measuring right and no sign of down syndrome. She then told us that the reason why my blood work was so weird and came back abnormal is because I have a Complete molar pregnancy with a coexisting live fetus. So what does that mean? Well I have a normal little baby growing, and then I have another placenta, with this growth of tissue pretty much. That other placenta is keeping this tissue or mole alive. So what happened essentially is that sometime during the fertilization process, the egg could have split and one placenta and fetus grew normally and then this other placenta formed but the little fetus never formed so now we are just left with this big ball of tissue. Yeah, Its weird. The Dr said that she has been practicing for 15 years and has never seen this, she has only read about it in textbooks, thats how rare this is. This placenta thinks it is keeping a little fetus a live, when its not really a fetus its what they call a mole. This situation is pretty risky and this is why we were given the option to end the pregnancy and we didn't hesitate to decline. We just saw our little healthy baby, how could we just end that. Why not give him a chance at life. The worst thing that will come from this situation is we will lose our baby and thats what we would be doing if we ended this pregnancy, so why not try and make it?
So what does this mean for me and the baby and what are some risks? Well The molar pregnancy grows a lot faster then our little baby so when that gets too big my body will say, "oh it is time to deliver" and could start going into labor which when it does that our little baby will not be full term and not really ready to come out. Another thing that can happen is that I can get preeclampsia, or hemorrhage which is obviously dangerous for me and we could lose the baby if it is too early. The mole could actually miscarry really at any point and then we would have to take the baby. So really we are wanting this Mole to keep growing and to keep living for as long as possible. The mole also can be cancerous and so after this pregnancy I will have to be on some mild chemotherapy for preventative measures.
The Dr told us that the studies have shown that about 45% of women with this usually will make it to 28 weeks and then the baby has to be delivered. Either my body will go into labor, or its getting too dangerous to go any further. The babies who were delivered at 28 weeks, about 70% of them lived and were fine. These are also old statistics since this is a rare case, they don't have much information on it. So our goal is to make it to at least 28 weeks. She feels very confident that if we make it at least to 28 weeks the baby will be fine especially because how great modern medicine is. He will have to be in the NICU for 2-3 months to keep growing and to make sure he is healthy but in the end he will be great. Obviously if I can go longer then 28 weeks then that would be great as well we just have to see how everything is going.
I am being monitored pretty closely at this point, I will be visiting with the perinatologist every 2 weeks to make sure things are looking ok and baby is still doing ok, as well as my normal visits with my OB, and with an Gyn oncologist because the mole can potentially be cancerous. I am also going to take my blood pressure daily to make sure it is normal, but other than that all we can really do is wait and pray that this mole will stay in a grow and not want to come out. The perinatologist told me to continue doing my normal daily routines because it will help me get my mind off of things a little more and help time go faster. She also said that this is why I do look a lot bigger than a normal 19 week pregnant lady, especially because this mole does grow a lot quicker. The top of my uterus is way above my belly button, where at this point normally, it would be either right at my belly button or a little under. So now we have the answer to why Im growing at such a fast rate.
This is a lot of information to take in and to understand, trust me we feel a little overwhelmed and kind of in shock that this is what is happening. Especially because my pregnancy has been very smooth and I feel completely normal. I have had no problems and barely any sickness. We can only hope for the best and we feel very calm and at ease with the situation and the decision we have made to go as long as we can and keep this baby and we feel like things will all be ok. There is a lot to learn still and there will be many questions that we will have.
We wanted to post this so that all of our family and friends would be able to know what is happening and hopefully we can keep everyone updated a little easier this way. We know that it is all in Gods hands and we trust him 100% and have complete faith in him. We are so blessed to have this little boy doing so well. He is so loved and we want more than anything for him to be apart of our little family. We ask that those of you who would like, if you could keep our little baby in your prayers. We believe strongly in the power of prayer. In advance, thank you all for the support that will be given, we are very blessed with amazing family and friends. We are grateful for modern medicine and the ability we have to know what is going on and that we can mentally and physically prepare ourselves for what is to come.
If you see me and I look huge, its because well, I am huge!! :) Growing a human and a Mole really makes things interesting.
Pray we can make it another 9 weeks at least!! :)
Mike & Amy
Time went on and at about 15 weeks I had a belly, like you could tell I was pregnant it wasn't really questionable, which I thought was a little interesting since this is my first pregnancy and I wasn't that far along. Everyone else thought it was weird too..many comments on how I look bigger then I should be and things like that. Honestly the comments didn't really bug me at first but after a while I started feeling like I may just be weird and just get huge quickly. I started feeling a little insecure about my baby bump and I tried to just brush it off and keep going, I was just happy baby was healthy and growing. I asked my Dr at my 16 week appointment if I looked huge. He said no to not worry about it, everyone is different and carries differently. He said I am just a small girl and the bump is just showing. I knew my 20 week appointment I would have an ultrasound that would look over the anatomy of baby and would measure him and then they would be able to see if I was measuring further along or if everything was normal. At my 16 week visit we also decided to do testing for spina bifida, hydrocephalus, and down syndrome.
About a week after I got the blood work done, the nurse called and said some of my tests were a little high for down syndrome so they wanted me to be seen by maternal fetal medicine. She said sometimes the test comes back high if you are having twins, you are further along then what you think, or the baby is in fact down syndrome. So we set up an appointment with the perinatologist and luckily they got us right in so we didn't have to wait for a long time to get some answers.
The day of the appointment came and I was a little nervous about what they were going to tell us, but knew that it was better to know what was going on then not. First thing they did was take my weight and blood pressure. My blood pressure was pretty high which was weird for me because my blood pressure has never been high so that worried me but I was pretty nervous as well so I think that may have something to do with it. Then we went and had an ultrasound. The Tech looked at baby and measured everything it was fun to see our little guy, he is always so active and moving all over the whole time. After about 30 mins of that the Dr then came in to discuss with us our lab results and the measurements of the baby. She said that the baby looked perfect and was measuring right and no sign of down syndrome. She then told us that the reason why my blood work was so weird and came back abnormal is because I have a Complete molar pregnancy with a coexisting live fetus. So what does that mean? Well I have a normal little baby growing, and then I have another placenta, with this growth of tissue pretty much. That other placenta is keeping this tissue or mole alive. So what happened essentially is that sometime during the fertilization process, the egg could have split and one placenta and fetus grew normally and then this other placenta formed but the little fetus never formed so now we are just left with this big ball of tissue. Yeah, Its weird. The Dr said that she has been practicing for 15 years and has never seen this, she has only read about it in textbooks, thats how rare this is. This placenta thinks it is keeping a little fetus a live, when its not really a fetus its what they call a mole. This situation is pretty risky and this is why we were given the option to end the pregnancy and we didn't hesitate to decline. We just saw our little healthy baby, how could we just end that. Why not give him a chance at life. The worst thing that will come from this situation is we will lose our baby and thats what we would be doing if we ended this pregnancy, so why not try and make it?
So what does this mean for me and the baby and what are some risks? Well The molar pregnancy grows a lot faster then our little baby so when that gets too big my body will say, "oh it is time to deliver" and could start going into labor which when it does that our little baby will not be full term and not really ready to come out. Another thing that can happen is that I can get preeclampsia, or hemorrhage which is obviously dangerous for me and we could lose the baby if it is too early. The mole could actually miscarry really at any point and then we would have to take the baby. So really we are wanting this Mole to keep growing and to keep living for as long as possible. The mole also can be cancerous and so after this pregnancy I will have to be on some mild chemotherapy for preventative measures.
The Dr told us that the studies have shown that about 45% of women with this usually will make it to 28 weeks and then the baby has to be delivered. Either my body will go into labor, or its getting too dangerous to go any further. The babies who were delivered at 28 weeks, about 70% of them lived and were fine. These are also old statistics since this is a rare case, they don't have much information on it. So our goal is to make it to at least 28 weeks. She feels very confident that if we make it at least to 28 weeks the baby will be fine especially because how great modern medicine is. He will have to be in the NICU for 2-3 months to keep growing and to make sure he is healthy but in the end he will be great. Obviously if I can go longer then 28 weeks then that would be great as well we just have to see how everything is going.
I am being monitored pretty closely at this point, I will be visiting with the perinatologist every 2 weeks to make sure things are looking ok and baby is still doing ok, as well as my normal visits with my OB, and with an Gyn oncologist because the mole can potentially be cancerous. I am also going to take my blood pressure daily to make sure it is normal, but other than that all we can really do is wait and pray that this mole will stay in a grow and not want to come out. The perinatologist told me to continue doing my normal daily routines because it will help me get my mind off of things a little more and help time go faster. She also said that this is why I do look a lot bigger than a normal 19 week pregnant lady, especially because this mole does grow a lot quicker. The top of my uterus is way above my belly button, where at this point normally, it would be either right at my belly button or a little under. So now we have the answer to why Im growing at such a fast rate.
This is a lot of information to take in and to understand, trust me we feel a little overwhelmed and kind of in shock that this is what is happening. Especially because my pregnancy has been very smooth and I feel completely normal. I have had no problems and barely any sickness. We can only hope for the best and we feel very calm and at ease with the situation and the decision we have made to go as long as we can and keep this baby and we feel like things will all be ok. There is a lot to learn still and there will be many questions that we will have.
We wanted to post this so that all of our family and friends would be able to know what is happening and hopefully we can keep everyone updated a little easier this way. We know that it is all in Gods hands and we trust him 100% and have complete faith in him. We are so blessed to have this little boy doing so well. He is so loved and we want more than anything for him to be apart of our little family. We ask that those of you who would like, if you could keep our little baby in your prayers. We believe strongly in the power of prayer. In advance, thank you all for the support that will be given, we are very blessed with amazing family and friends. We are grateful for modern medicine and the ability we have to know what is going on and that we can mentally and physically prepare ourselves for what is to come.
If you see me and I look huge, its because well, I am huge!! :) Growing a human and a Mole really makes things interesting.
Pray we can make it another 9 weeks at least!! :)
Mike & Amy
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