I am so sorry that I have not written a post in over 8 months…….I became very busy with the holidays and with traveling many places for Quinn’s cheer competitions, Colin’s sports etc. All things that I am so thankful for the memories. I had a second craniotomy in February which was so easy in regards to the brain but gave me numerous issues in other parts of my body. Who knew that brain surgery may make your liver mad right. My liver has been extra mad since and has been causing me lots of issues. I had lots of fluid on my abdomen and had to have it drained. I found out the the drug Enhurtu that I was on was no longer working and now today I found out my current drug is also not working.

My bloodwork is not good. My bilirubin which is a major test for my liver function continues to rise causing me to start turning yellow. Today my oncology team told me that my current medicine is not working and that I am probably looking at months to live. Months…….how many? Only God knows. I will start taking some chemo pills in hopes that they slow things down, keep them contained and give me low side effects. Holy Moly have I been dealing with some crazy side effects the past few months. My Dr mentioned today that the amount of treatments that I have had (14 in her notes since she condensed some but 17 in my notes) is something she has not yet seen in another patient. I guess I did give this a good fight. It’s hard to know that the fight is almost over.

I remember eight years ago when I was diagnosed i never thought I would make it this far. I never thought that I could have cancer, work, be a wife, fundraise for the Jimmy Fund, make so many memories and most importantly be a mom for so long to Quinn and Colin. I thank God everyday for the past eight years with them and Trevor. I hope that they will be ok and will be surrounded with love and support when I am gone.

I thank everyone who has showed us so much love and support over the past few years. We were definitely shown the true meaning of friends and family through this. Thank you for all of the prayers and thoughts you gave us. I felt truly blessed and am so thankful. This may be my last post as I am going to focus on making more memories when I am feeling good.

Thank you all again. Sending you all my love.

Happy Thanksgiving to everyone. I hope that everyone takes a moment to look at their lives and be thankful for the good in them. It is hard to believe, but take it from someone who is dying from terminal cancer, the good outweighs the bad……you just have to keep your eyes and heart open for the good in your life and not let the bad control you!

The past few months have been nuts for me. I started my new chemo medicine called Enhurtu. I need to go in every three weeks for treatment. I haven’t felt too bad. Very, very tired all of the time and some stomach and nauseous issues to deal with. I got very depressed when I could not drive for a while. I felt like a prisoner in the house b/c I could never leave it on my own. I am so thankful for the people who picked me up and helped me escape the house and feel normal for a little bit! I am so so thankful for the people who stepped up and drove Colin and Quinn where they needed to go when we needed it. It is so amazing how some friends take over and get the kids taken care of.

I had a brain scan the day before Halloween to check on how the surgery and radiation went for me. The results were emailed to me and when I read them all I saw was the words “increase in size”, “enhancing lesion” throughout the report. I told Trevor that I was dying now and there was no hope. After some review with the radiologist, he had said that this result was not too bad and that my brain spots could just be inflamed right now from the radiation and we would watch and hope that they would go down on their own. A couple of days later, the brain surgeon called and said he reviewed the report and wanted to go in and do a second craniotomy on me to remove the largest remaining tumor. WHAT THE HELL!! I went through hell to recover from my first surgery and then went through hell for the radiation. I still don’t feel great from it all and I just got approved to have my license and some freedom back to my life. I told the surgeon I wasn’t interested and luckily my oncologist agrees that surgery is not an option right now.

My body has been through too much, my cancer grew quite a bit when I was off chemo dealing with the brain, and the chemo I am on now seems like it is working. My oncologist and a tumor board that my case was presented too agreed that we should wait and see if the chemo helps and if my body/brain needs some time to recover on its own. I get some scans next week to see if the chemo is working so please say a prayer for me!

I had the pleasure of watching Colin turn 10 and Quinn turn 13!!! I am so thankful to be here for these moments. The kids were 5 and 2 when I was diagnosed and I truly did not think I would see these special days. As we get to this difficult point in my journey and my cancer filled body is getting tired. I worry a lot for these kids. I know that they will be fine but I am sad that I will not be here for so much. I am thankful that they have the best family and friends around them. I am thankful for our community that has backed our family up these past few months in so many ways. I am thankful that I am still here and am still fighting. I am thankful to be here for the upcoming holidays especially b/c I thought last year was my last holiday season on earth so it means a lot to be here again. I plan to make the most memories that I can with the ones that I love.

Right now in this cancer journey it is a weird time. I feel weird. I do not feel like myself. I feel like I do not look like myself. I can’t drive so I am stuck in my house all of the time. I do not have a lot of energy so I can do one thing and then take a nap. I can’t really walk for a long time without getting dizzy or still needing my cane.

I guess it is all part of the course that I am currently on. I had brain surgery and never fully recovered from it before I had radiation. I ended radiation on a Tuesday and then next day I went in and started my new chemo. It was scary on that Wednesday to see the results of my bloodwork. I knew in my head that it could be bad because I had no chemo treatments for six weeks and the cancer was on its own to do what it wanted in my body. Well my liver is not really in a good spot right now since it appears the cancer grew in my liver. We are hoping and my doctor is optimistic that the new chemo I am on will attack this cancer all over my body and brain. The side effects from this chemo are rough and so far I have experienced a couple. I have lost my taste of certain foods, tired all of the time, nauseous and some other things.

I am sad that this is where I am on this journey. I recently found out about a friend of mine- another patient- who I would visit in the infusion rooms often. I found out that she is now in hospice because nothing is working for her any longer. I know the reality of my situation and know that this is not too far away for me. I feel nervous and an extreme need to get things in order, teach my kids what I want too, make some memories- but my goodness I need more energy.

What I have learned through this whole experience is that Life is no joke. You can always get bad news and a bad situation, no one is guaranteed tomorrow. Make the best of your life. Be happy as much as you can. Be nice to others.

The Jimmy Fund walk was held this past weekend and I cannot say enough thank you’s to everyone that showed up and especially to those that put it all together. Sarah, Jen and Sarah- it meant the world to me that you put that walk together. It also made me feel like you guys are in to do that every year- whether I am alive or not- which means the world to me. My family and I were so thankful to everyone that showed up. I always tell the kids that everyone at an event like this will be the people that will be here for you when things are tough with mommy. So thank you everyone.

I am working hard on getting my head in the right space. On trying to be positive and feel alive again. Hopefully soon I will somewhat be my normal self again.

I have always had a strong brain. I am not the smartest person you will meet but I will claim that I always have known how to make things work. How to deal with hard times in life. How to do good things and work hard. How to make my life the way I want it. I also know that I have definitely been guilty of showing some crazy sometimes! I giggled as I wrote that because I love my CRAZY!

Well now, my brain is messed up. The craniotomy that I received a couple of weeks ago went well. An amazing neurosurgeon- who I just can’t compliment enough- did an amazing job. They removed the largest tumor on the left side of my brain. Oddly enough there was not a lot of pain after the surgery. The main issue after surgery was a lot of pressure on the side of my head where they had cut. I was in the PACU (patient after care unit) until about midnight after my surgery being watched by an amazing nurse. After I was moved to my room on the 10th floor, I met my roommate-a woman who was waiting to have an extremely large tumor removed from her brain. A funny thing happened to us in our room on Wednesday…….our bathroom started overflowing from all water spots- sink, shower and toilet. Our room filled with water and we had to be moved quickly b/c there were inches of water in the room. Looking back it was kind of funny that this happened. We were then upgraded to a room on the 15th floor with a beautiful view. I was then released on Thursday and made my way home. For one week, I spent most of my time in bed b/c I was exhausted. I have a PT come a couple times a week to work on my strength since my legs and feet are feeling pretty weak right now. I am trying to spend more time out of bed but in all honesty, I am still very tired all of the time.

Even though I had the largest tumor removed I have now been told that I have 6 other tumors in my brain. The largest one is about 2.6 cm big and is on the right side of my brain. It is not operable right now so I will be starting brain radiation in the next week or so and they will be radiating all six tumors in hopes of clearing my brain from this cancer. I am actually starting a radiology clinical trial and will be receiving (hopefully receiving b/c some are picked to receive the med and some receive a placebo) a medicine that will be mixed with the MRI contrast and it will attach to my tumors and start shrinking them and then the radiation will zap them all as well. After radiation is done, I will start on my new chemo therapy- Enhurtu. Hopefully that medicine works for me and keeps the cancer in my liver, lungs and bones stable.

This whole journey is crazy. I am scared, shook up and exhausted from this cancer journey. I thank everyone who has been there for us and so many that helped us out and were so generous with us in so many ways. As sad as it is, seeing all of this love and support brings me so much peace. Peace for myself but more importantly, I feel peace and strength in the support that Trevor, Quinn and Colin will receive when this cancer takes me away from them.

Last year I did not do the Jimmy Fund walk b/c I was given less than a year to live a couple of weeks before the walk and I just wasn’t in the mood to do it. This year I am thankful for my friend Sarah who made the team and is organizing the walk in Somerset. I am also thankful for my friend Jen who is helping Sarah with all of the details! The walk will happen at SBRHS on October 1st. I am hoping that I am well enough to attend and can see everyone. We have raised hundreds of thousands of dollars for the Jimmy Fund over the past 7 years and the money raised is so important. The trials and experiments at DFCI are amazing and I have been involved in so many. If you would like to join the walk or donate, please visit http://danafarber.jimmyfund.org/site/TR?px=1003251&pg=personal&fr_id=2000.

I hope this post makes sense……..got a little dizzy while typing. I am working with a messed up brain!!! 🙂

Many people do not know this but last September my oncologist told me that I most likely had less than a year to live. None of the medicines had worked on me for the past two years and we were quickly running out of options. I continued to fight and moved on to three more treatments. In April I was lucky enough to get in to a phase one trial with DFCI. This was so good to me. I felt like my old self. I haven’t felt like myself in more than five years. We made so many memories since I started this trial and I am forever thankful that I was able to do that with my family. I thought this medicine was my miracle. I felt great and it was containing my cancer and at this moment nothing in my bones, lungs, or liver was growing. It wasn’t shrinking either but not growing at this stage is huge. Last week after seeing my scans looking good, I was so excited that one year later- when I wasn’t supposed to be here any longer- I felt amazing and the med was doing something. Maybe just maybe this would be my miracle. I went into DFCI for a review and it was all good.

But I had some info that I have been keeping quiet all summer. I have been feeling a little dizzy at times and had some flashing at times outside of my left eye. I thought maybe the 5 concerts I attended did it or maybe the fact that I was doing more this summer than I have done in years was wearing me down. I wasn’t going to mention it to my nurses but my heart told me that I should. After mentioning it I was sent down for a brain CT and shortly after I returned to my chemo room, the results were in showing two large tumors in my brain. WTF! How quickly your life can change. Immediately they wanted me to have a brain MRI so we returned the next day and this MRI showed that I have a total of 5 tumors on my brain. It is devastating when the cancer crosses the brain/blood barrier as I am told and this definitely means that my battle is a lot tougher going forward and is starting to near the end.

We found out today that I am no longer able to be on the trial. I will be going into Brigham and Woman’s on 8/29 (next Tuesday) to have brain surgery where the largest of my tumors will be removed. Short stay in the hospital apparently and then home to recover which they say should only take a few weeks. Once ready, I will then have radiation to the other 4 spots. We do have another treatment in the lineup and the plan is to start a new medicine Enhurtu once I am ok’d to start.

I was told again that I most likely do not have a very long time left on this journey but who knows. I am a fighter and Quinn, Colin and Trevor make the fight worth while everyday. It is my goal in life to be here with them as long as I can be. I thank god for all of the memories that we made this past summer. I know that God gave us the ability to make all of the memories that we did. I am terrified right now. I am sad that this is my life. I am thankful for all of the people who have reached out and stepped up to help us. I thank god that my kids will have so many people around them when I am not here any longer.

I try to keep a happy face on all of the time and approach this cancer nonsense with the best attitude. This life sucks though. Please keep us in your prayers and hope that this brain surgery goes well.

Since January my life has been a crazy rollercoaster ride in so many aspects. On the home front everyone is doing well. The kids are now fully aware of how dire and serious my cancer journey now is and we started seeing a family therapist that can help the kids come to grips with all of the things that come with having a terminally ill parent and also be there for them when my inevitable passing occurs. One of the things that stuck to me in one of our first meetings is that the therapist pointed out that the kids have had a sick mom for most of their lives! The kids blank stares and when they said that I have only been sick the past couple of years was one of my proudest moments. It was my main mission when I was diagnosed to give these kids the most “normal” life I could and to never make them feel like they had a sick mom. I am so happy that I accomplished this, and that this awful disease was not in the forefront of their youngest years. The first six months of this year have been so busy. As you can tell from my FB and Instagram posts our little soccer and cheerleading stars have kept us on our toes. I am so thankful that they have both found something that they love so much!

On the cancer side of my life things have been tough. I started a new treatment back in January. Lucky #13 it was supposed to be, and it was anything but that! This treatment knocked me out in so many ways. Stomach issues, extreme fatigue, and overall, it just took me a long time to recover after getting the med and then when I started to feel better it was time to get the chemo again! You can never tell how cruddy I was feeling though. I went to every cheer comp that there was and every soccer game that we could make it to and then would collapse into the couch or bed upon my return home! The upside of that medicine though was when my tumor markers started dropping- hundreds of points at a time leading us to believe that this medicine was attacking the cancer. Until my scans at the end of March. The scans showed that while this medicine did attack and shrink some of my existing tumors it did not stop several tumors from showing up. Shockingly many of the new tumors were in my bones. A spine covered in tumors and many other affected areas including innumerable lesions on my liver. How this is possible, and I am still standing is beyond me! This was a hard pill to swallow. At this doctor’s appointment we discussed the next options (which we are quickly running out of), life expectancy, hospice, and a clinical trial. Since I am not ready to give up, we decided to move forward with a Phase One clinical trial.

Before I could start, I needed to get a liver biopsy done. The recovery was tough, and I was down for a few days. We did the four week “wash out” allowing all the past chemo to get out of my body and we started this trial mid-April. The first couple of weeks I needed to be at DFCI for 6:30 Am and didn’t leave until 8:30 pm. I have reported to DFCI every week and have taken the pills and shots needed for this trial. A couple of weeks ago my bloodwork came back alarming. Since this is a trial and I am at the point in this journey where everything is on high alert, we moved my scans up to this past week. I was scanned on Tuesday and reported yesterday for the results.

Thankfully, right now this trial medicine is containing my cancer. No shrinkage but no growth either, which is good and considered stable. This is the first time in over two years that I have received some positive news after scans. I am very thankful right now because I also feel so good. I have not felt this good in over two years. I feel somewhat like my old self. My hair is growing back and growing all over! I have had to shave my whole face lately due to a new mustache and beard!!! 

In September I was told that I have less than a year to live. In December I was told possibly 3-4 months unless we found a medicine that worked. I don’t know what my timeline looks like. I know this cancer is strong and I know my death is in the close future. I also know that today, right now, I feel alive and am alive, so I am going to make the best out of every day!

Happy New Year! I hope that this new year brings health and happiness to all those that I love. This year is a sad one for me. It will most likely be one of the last for me.

The week of Christmas I has some very bad lab results that resulted in me needing to be scanned the following week to see what was going on. I was told at the time that we were looking at months being left and that conversations with the kids about my death should start. All of this three days before Christmas. I went into my scans after Christmas thinking that I was halfway in a grave but the results showed a mix bag of results. Some of my liver tumors shrunk but three new ones popped up and about 5 new spots in my bones also showed up. So while Erubilin worked a little it didn’t work enough. So now we move on to treatment number 13- Trodelvy or as the nurses call it “Sassy” (a nickname for the medical name of the drug). Sassy it is and Sassy I am so let’s hope that this works.

I don’t want to say that I am losing hope but it is very hard these days to remain positive and have hope that this med will work. Starting a new med is terrifying. You have to no ideal how it will make you feel or effect your daily life. No idea what side effects to expect. This is now the 13th treatment that I have started and had to get used to. It sucks, its hard and to quite honest, I am tired. Tired of it all. I am not going to give up b/c I have too much to fight for but this life is really hard now. It’s really hard to know that your life is coming to an end but you don’t know when or how long you have but you know its not much and all you can do is throw your hands up in the air and hope for the best.

One of the toughest things I have ever had to do in my life is tell Quinn and Colin that my cancer is going to take me to heaven. As I told them, we don’t know when but my cancer is now more aggressive and medicine is not really working on it anymore. It will take me to heaven sooner than we would like. As you can imagine no child should have to have this conversation. They both dealt with it differently and we spent the rest of the day snuggling and doing things as a family. We are all working together and with others to learn how to deal with this the best and healthiest way possible.

I hope that this year ahead brings my family many great memories and fun times and maybe even a miracle of more time. We shall wait and see as that is all we can do at this point.

Lately in my dreams and even in my day dreams, I see myself often walking on a tight rope. I think this is a great way to describe how I feel about my life lately. Bobbling along this path of life, taking one step closer to death and then a step back closer to “normalcy”, all while feeling that I could just “fall off” at any moment (if this makes any sense). About six weeks ago I was told what my life expectancy looks like. For the first time since diagnosis, my expectancy was measured in months versus years. I was told to get my affairs in order, make sure Trevor had all of my passwords and that if there was anything I wanted to do, then make sure I do it. I struggled with this last one because in reality all I WANT TO DO is LIVE. I want to be here with my kids throughout their lives. I would trade anything for that.

I am so saddened at what my life has come to because of this disease. I always was a hard worker and did so many things. Now the smallest task takes a lot out of me. I am trying to organize my life in a way that will be easier for Trevor to navigate in my absence. Trying to set my kids up so that it will be easier on them when I am gone and so that they will have the support system around them that they will need. Getting the house in order and getting rid of all of the extra things that aren’t needed. It is sad. Sad to try to prepare a life that doesn’t involve you.

I started my new medicine, Erubilin, about six weeks ago. The actual drug is only a two minute push into my port. When I started the med, I tried the scalp cooling in an effort to save my hair. It didn’t work as most know and now I am rocking a bald head. It’s funny b/c for the past 6 1/2 years, one of my biggest fears was being bald. I actually chose medications based on whether I would lose my hair or not. I am not sad about being bald. I am actually having some fun with it! I was so nervous to shave my head b/c I was nervous for the kids and how they would react. My social worker suggested asking the kids to help me do it. Initially, they both said that they did not want to help. Quinn then changed her mind and said she wanted to do it- proving to me once again that she is tougher than I give her credit for. Colin wanted nothing to do with it. On a Friday night, Quinn and I got started. We laugher as she cut chunks of hair off of my head and then Trevor and Colin joined us. Each of them cutting pieces- laughing at my mohawk and then Trevor had the hard job of shaving my head and cleaning it all up- nothing a husband should ever have to do for their wife.

My recent bloodwork has shown that this medicine is possibly working on my cancer. As my dr says, “we celebrate this news until the next time we do bloodwork and it shows something different.” It’s hard to celebrate this news when I know what we are dealing with. There is no cure, there is no fixing this or coming out of it. Death is the end result of this……now we just hope that we can delay that outcome for as long as we can.

“How can you enjoy life if you spend every minute fearing the end of it?”

This sentence was in a book I just started reading and I felt that it was the perfect way to describe my life lately. My cancer has always held the sand timer over my head since the day I was diagnosed. The first few years the sand dripped down so slowly and then there was some progression to my liver and the sand sped up a bit. Well in the past year, the sand is falling down at an alarming rate.

In the past year, I have been on six different treatments that did not work. They wreaked havoc on my life and my body but they didn’t touch the cancer. The latest treatment, Taxol, that I have been on since June had it’s own lovely side effects. Taxol made me lose all of the hair on my body! While scalp cooling was great and saved a lot of the hair on my head, I do have huge bald spots all over. I no longer have any eye lashes and the only reason I have eyebrows is because I had them tattooed on earlier this year!

Throughout my time being treated with Taxol, my bloodwork would always point in the direction that this med was not working for me. I had scans last Friday which proved this. Unfortunately, my cancer has now exploded in my liver- creating innumerable liver lesions, I have some new spots in my spine, shoulder and femur. The cancer has also now taken up residence in my lungs. Not good news at all and some hard topics were covered in my appointment today. We are going to start a new chemo later on this week and I will really need a miracle that this med works and gets this cancer under control. I have not been feeling my best lately and it looks like I am on the path to just get worse if we cannot get this under control. Unfortunately, my journey has gotten very very tough now and the sand is starting to run out.

I went to my last post from May 13th and re-read it. It’s funny b/c this is my life, I live it daily; I experience all of the feelings and sometimes on a day like today, I can’t remember the terror and defeat that I felt a month ago. For some reason, I am able to tuck those sad and scary feelings into the back of my mind for a little while….until they poke their ugly heads out again, which they always do.

Since learning that my cancer continues to spread at an alarming rate in May, there have been so many highs to celebrate.

I travelled to Portugal with three of my greatest friends. A trip we have all been talking about for years. I felt amazing on this trip. Almost rejuvenated. Maybe it was the 14 hours of sleep I had on the first night there, maybe it was the much needed girl time and the break from mom and wife duties, maybe it was knowing that the chances of me making it back there are slim and I needed to soak it all in.

I witnessed Colin win his little league championship with his team- The Pirates. A group of kids that have been together for years and who my family have become fond of and have become close with their families. The energy of the crowd this night watching these kids and cheering them on was something for the books. A comment was made to me recently when discussing my illness with another mom in town. She said to me “This town will always take care of your kids.” This. This right here has stuck with me since the moment she said it!! I believe this to be true. I witness it daily through the people my kids are surrounded by in town- their teammates, their coaches, their friends, their teachers, the parents……so many people that I know will continue to cheer my kids on long after I am gone.

I was able to watch Quinn graduate from 5th grade. This was momentous to me for so many reasons. You see, 6 years ago, weeks after being diagnosed with terminal cancer, I sat in an auditorium and watched my 5 year old daughter walk across a stage in a cap and gown and graduate from pre-school. I sat in that auditorium and the tears streamed down my face because I wondered if this would be the only graduation ceremony of hers that I would ever attend. I made a goal to make it to her 5th grade graduation and in true April fashion, I did it!! Now my next goal is to make it to Colin’s!!

Both kids are now on summer break and we have a lot to look forward to. I am so proud of both of them. They do really well in school. They do really well in their activities- young soccer and cheerleading stars in the making! All while dealing with a very sick mom at home and all that comes with it. And while they drive me crazy like most kids do to their parents, they are really great kids (if I do say so myself).

While the highs are plenty, so are the lows unfortunately. I reported for chemo on June 1st. I was terrified, full of anxiety and really wondering if i wanted to do this. I kept saying to all of my nurses that I didn’t want to do this chemo- Taxol. I kept repeating over and over that I didn’t want to do. Said it so many times, that my NP said to me “April, you have the right to choose not to do it!” I love my NP and I looked at her and said, I am going to do it b/c quitting right now is not the choice for me. For some reason this exchange snapped me out of whatever chaos was happening in my mind and I said, I’m ready. So……I did it. My nurse helped me put the cold cap on my hair. The cold cap straps so tightly on your head and gets cold…….not just a little cold…..a severe and very uncomfortable cold. Thankfully, i only felt this discomfort for a few minutes b/c as soon as the IV Ativan and IV Benadryl (a wonderful combo) hit me, I was out like a light! The next thing I new my nurse and stepmother were telling me it was time to try to start waking up. I looked at them and they said you are all done and it all went great! HA! I slept through the whole thing!! In my opinion, the way to do chemo!!!!

Taxol for some reason felt like a turning point for me. Felt like the beginning of the end. Felt like the life as I knew it would be over and I would be so sick for the rest of my time. With hopes of not jinxing it, I have to say, I am pleasantly surprised with how “not bad” I feel. Do I feel amazing, NO. But……I don’t feel too bad!! Thankfully. I report to DFCI every Wednesday for treatment. 3 weeks in a row with a one week break in between so my body can recuperate! Ann (my stepmom) has been my partner in crime on this journey. We have a great little routine going for chemo days and she even spoils me when I ask to stop at Chic Fil A on the way home!!! So thankful for her!!

Happy Summer Everyone! Enjoy, Make memories, stop sweating the stupid stuff and LIVE your life to the fullest!

XO