Keep on trucking

Family and friends, thank you for your constant and never ending support. Sorry that it has been so long since I have given an update. It has been hard for me to write lately because I either feel too nauseous to look at my computer/phone after chemo or I am feeling a little down and do not want to think about my treatment and situation. With a tough couple of months ahead I wanted to let everyone know what is going on because I would appreciate your prayers and thoughts ♥

I have completed cycle 1 of my clinical trial in Seattle. It went according to plan but was really miserable as far as recovery after the chemo. I have my next cycle starting the 24rd-27th (it’s a day off on my calendar below). Trevor and I will fly over to Seattle for it and then I will return on the 31st for my one day infusion with my sister.

Tomorrow I have my bone marrow biopsy. This is to see if the cancer is in my bones (hopefully not). Last time I had this biopsy in June I was extremely sore for a few weeks so we are hoping that it will not be as bad this go round.

Below is my scheudle through the end of February:

After the stem cell transplant I will recover in the hospital for 2-3 weeks. After that it will be another few months of recovery until I get my energy/strength back. It’s a lot to take in but I know I will just keep on going and get through this.

On a lighter note, here is a little summary of what has been going on the past few weeks when I’ve been home:

• Trevor is now back in Spokane…yay!
• Family game nights at the Travis’
• Weekly Fixer Upper viewing night with my girl friends 🙂
• Physical therapy with my favorite 2nd family at PTA
• Coffee shop dates with Trevor on my good days ♥
• Adult coloring books for days

Our good friends, Sam and Kyle, are flying for AZ tonight to visit us for the weekend and we are really excited. We are trying to enjoy our time when I feel good enough to get out of the house and appreciate the little things on a daily basis. Trevor pushes me to do this every day and I thank him for that because it is not as easy as it sounds.

I’ll keep everyone updated on my bone marrow biopsy results and how next week goes.

God bless

 

Glad Game

This is Julie, otherwise known as Emily’s mom, and I am writing from the University of Washington Medical Center.  We are now on our second day of Emily’s participation in the Brentuximab clinical trial.

We flew over on Tuesday morning and with Emily’s friends, Courtney and Lauren as chauffeurs we headed out for lunch and ice cream.  It’s freezing in Seattle- but ice cream always is the perfect comfort food.  The shop had Don Kardong’s quote on a shirt “without ice cream there would be darkness and chaos” and we felt right at home.

After wandering in a couple of shops they dropped us off at Seattle Cancer Care Alliance (SCCA) for a meeting principal investigator of the clinical trial.  It was hard to hear all the facts (warnings of what can go wrong) of everything Emily was about to do, especially since we had pre-read about the trial, but of course informed consent is part of anything. The doctor was very careful to say that the schedule for treatment other then the Trial drug portion would be worked out with Emily’s oncologist in Spokane.

Next, we took the free shuttle to the SCAA house/hotel (also free) and settled down for the night.  As it got dark so early we ordered an omelet in, to share and watched HGTV.  The room is free and very clean.  Only two problems, people arguing in the middle of the night upstairs woke us up and there is construction noises on 3 sides of the building.

When morning came one of Emily’s best friend since childhood, Nicole, accompanied by her sons, rescued us and we headed off to University Village for breakfast and play time for the boys in the playground. Nothing could have made us more comfortable as the unknown is never easy. They dropped us off for a quick appointment at SCCA and then we took another quick shuttle ride to UW.

After checking in to Emily’s room she began being cared for by the vey caring and competent staff.  Thankfully our close family friends came and helped us pass the time. Larry took Emily for a walk around the halls, the first of many in the next few days while Carey comforted me.

After they left I felt myself get nervous as they started the Brentuximab, but prayer seemed to get us thru the evening, encircling us.  The only new side effect seemed to be red hands that throbbed a little.  We stayed up late (at least for me), and finally Emily fell asleep. I have a reclining chair/cot and even was given a heated blanket to keep me warm.    By morning the redness was all gone.

Today we found that she’ll probably be done so late on Friday it would be easier to spend the night here at the hospital before catching the plane home on Saturday morning. They start the chemo drugs at certain intervals and one group runs for 24 hours.

Now back to the title “The Glad Game”.   Several weeks ago our dear friend, Kathy, mentioned that PBS were showing remakes of classic movies like Pollyanna and Anne of Green Gables.  Emily and I had watched them when Jim and Trevor weren’t around (it might have pushed them over the edge).  Those of you who remember Pollyanna, either from the movie or book, know she played a game her father taught her called the glad game.  Her father, a pastor, had counted the vast number of verses in the Bible focusing on gladness, and had taught Pollyanna a game where she could always find something to be glad about even at the worst of times.

Late last night when during a brief moment Emily was wondering how she was going to do all this treatment, 3 more trips to Seattle, and then the long hospital stay in Spokane for the stem cell treatment I had to refrain from playing the glad game with her.  I’ve been known to over do in that area.  But with God’s help she recovered her upbeat I can do this attitude of I know I can do this and there is a reason for me to be the one doing it. God always hears what our heart needs and answers in wonderful ways.   He is the ultimate glad game and we can rejoice in it.

Thanks for all of you who care so much for Emily and Trevor.  Having them be at home is incredible, the support they have received from friends and strangers, from South Carolina to Spokane makes each days’ journey so much easier.  The thought of Trevor getting to be a Pirate for spring semester answers Emily’s  prayer of him not having to put his education on hold to be with her and all the people who have reached out to help them is so heart warning to Jim and I.

 

 

 

 

Last minute changes

Yesterday evening my family and I went out to what I like to call “Emily’s Last Supper” and a movie because my new treatment was scheduled to start this morning. As the movie ended and we checked our phones we had multiple emails and missed calls from my oncologist. He had spoke with fellow oncologists at Seattle Cancer Care Alliance (SCCA) and long story short, recommended an option of being a part of a clinical trial in Seattle as my chemo treatment.

With my check-in time being only 10 hours away for my scheduled chemo treatment I had to make a last minute decision. With help from my oncologist, Trevor and my parents, I decided that this clinical trial is the best option for my treatment for many reasons.

The study as a 88% complete remission to date. My treatment will consist of the same chemo (ICE) but adding an additional drug called brentuximab as part of the chemo regimen. Brentuximab is an antibody targeting CD30 on Hodgkin’s cells. I’m attaching a link below with detailed information about the clinical trial if you are interested.

https://clinicaltrials.gov/ct2/show/NCT02227199

Not only does the remission percentage look great but the recommendation from my oncologist means a lot to me. He had mentioned that I would most likely be getting brentuximab after treatment anyways, so I would rather try it out in the forefront of the stem cell transplant incase that would eliminate getting it later on. This trial also reduces the time frame of the chemotherapy treatments compared to my initial treatment plans. The trial consists of only 2 cycles compared to the 3 cycles I was planning on doing. The best part is that I can still do my stem cell transplant treatment in Spokane (a lot of hospital time so I want to be by my oncologist, family and friends).

It may seem like this was an easy choice for me to make, but I can assure you this is very scary for me. Being a part of a clinical trial is not ideal in my mind (although I am a graduate research assistant in my schooling and understand the importance and impact of research). There are still many possible side effects and unknowns along with traveling to and from Seattle for the next two months and having no idea what my insurance will cover. Not to mention that I have been mentally trying to prepare myself to start chemo today and to have that be changed/delayed is emotionally challenging for me.

We have been on the phone all day with staff from SCCA, looking into plane flights and logistics, and filling out paperwork. I currently have a screening appointment and meeting with the oncologist the 3rd of January at SCCA and UW Medical Center. We do not know how long I will be staying each trip and will find out more details this week.

Although this has been a whirlwind 24 hours, my mom pointed out God’s perfect timing with this. If the oncologist from SCCA had not emailed my oncologist back yesterday evening I would have started treatment today and would have not been eligible to be in the clinical trial. To me, this is all in God’s plan still, which gives me comfort.

On a lighter note, Trev and I received a Christmas care package from our good friend/SC roommate and I have to share the funniest stress-relieving gift I found inside. Thanks Meghan ♥

And here are some of my favorite photos from our wonderful and much needed Christmas trip in California with my family:

Biopsy Results

Just a quick update:

The surgeon called today and my biopsy results came back as expected: Hodgkins Lymphoma. So we will proceed with the stem cell transplant treatment plan.  

My family and I just arrived at my grandparents house in California last night and I already feel better. This little Christmas trip before I start my new treatment is just what the doctor ordered (pun intended;) )

Thank you all for your encouraging comments on my last update. From the bottom of my heart, I appreciate your support more than you know. I hope you all enjoy the holidays regardless of challenges you might be facing. This is the perfect time of the year to count our blessings and gain perspective on what’s really important to us in life. And of course, celebrate the big guy up there 🙂 

God’s ever changing plans

Just as I thought I had overcome one of the most challenging times in my life, my family and I were faced with upsetting news earlier this week. My scan came back showing that I still have cancer. One spot lit up to the right of my neck and the other in my abdomen. After having such a great response to the first 2 cycles of chemotherapy, this was very unexpected. I have a biopsy tomorrow to confirm what it is, most likely still being lymphoma (we hope). I will be able to have Christmas with my family and then I will check into the hospital on the 27th to start the process of a more intensive chemotherapy and stem cell transplant treatment.

Below are the notes from my oncologist on what the treatment plan is for now:

1) Biopsy of the recurrent right neck node by Dr. Bunn this Friday (12/16).

2) Admission to the hospital for ICE on 12/27 after she returns from a vacation with the family.

3) Hold bone marrow biopsy until right before collection.

4) Reassess response with PET/PT scan after 2 cycles of ICE (CT alone will not be enough)

5) Collect stem cells after cycle #3 and do a bone marrow biopsy right before collection.

6) Depending on her disease status, proceed with stem cell transplant 3-4 weeks after cycle #3 or give more chemo (1-2 more cycles if needed) before transplant to achieve complete remission if not there after 2-3. My guess is she will not need more than total of 3 cycles of chemo.

My oncologist told us this will all take around 6 more months. I will be staying in Spokane for this time.

While I still feel a little devestated, I am slowly wrapping my mind around this news and trying to get back to a positive mindset. The thought of having to endure more treatments makes me feel sick to my stomach but I do know that I will get through this eventually. I still feel grateful to have a chance a being cured, not just managing my cancer, because so many people have to go through much more than I do.

Although it is hard for me to see and understand right now I have no doubt that this is just another part of God’s plan for me. I am working really hard to keep my faith strong because I know it will help me through this, just as it did the past 6 months.

A good friend sent me the perfect verse today:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

2 Corinthians 12:9-10

Game day tomorrow!

I will be having my 12th and hopefully final round of chemo tomorrow and even better..Trevor flys into tomorrow too!

I will have a scan next week that will hopefully tell us that I am in remission. 

Although it seems like I’ve been waiting for my last round for a life time now, it comes with mixed emotions. Emotions of knowing I have a very long road ahead of me before I will be feeling “normal” again. Emotions of knowing I’ll be getting scans the rest of my life. Emotions of knowing how it will take a long time and a lot of trust in God to not worry about cancer coming back and having to go through this all again. 

I have sleepless nights thinking about these but I know that for right now I need to focus on tomorrow and the joy and relief that it can bring me and my loved ones of hopefully being my last treatment. The rest I need to leave up to God. 

For those of you who continue to read my updates, thank you for your endless support. I am so lucky to have the support system that I do. 

Discharged and never been happier to be home!

I was feeling well enough to get on my phone today in the hospital and was so overwhelmed with love and support from texts, calls and Facebook posts. Thank you all so much ❤️

It has been a long couple of days but I am happy to announce that I was discharged from the hospital today and am resting at home, and boy does it feel great!

The past few treatments have taken a physical toll on me but being home has helped me tremendously mentally and emotionally. Earlier this week my blood counts were looking very low so I went in for my daily shots to boost my white blood cell count. My body does not react to these very well, I have extremely uncomfortable bone marrow pain that is hard to relieve. I felt pretty miserable on Wednesday so when I went to get my shot in the afternoon, the nurses at CCNW took my temp and I had a 102 degree fever (good thing my dad said something to them about me not feeling well). When they told me to take a seat in the chemo chair for blood work and wait to see the oncologist I knew I wasn’t going to be happy.. 

My blood counts were on the very low end (almost .1 for my neutrophils and WBC). That in combo with my temperature meant that I had what they call “neutropenic fever” which is not a good thing when you are going through treatment because you are at high risk for infection and can develop into sepsis.

My oncologist told me they were going to admit me to the hospital for at least a few nights and of course I embarrassingly started crying in front of my oncologist, nurses, and chemo patients in the room (blaming this emotional outburst on the effects of chemo;)). One week away from my last treatment this was the last thing I wanted to hear, especially having such a bad/long experience in July in the hospital. 

When my parents and I got to Sacred Heart my temp has risen to 103 and I was not feeling well at all. I was hooked up on a variety of rotating antibiotics through my accessed port from Wednesday evening until I was discharged today. I was lucky to have some wonderful nurses and CNAs. My mom spent the night with me at the hospital each night to help me and my dad, sister and friends visited and brought me some food to help make my stay a little better. I’m one spoiled girl!

After getting sick to my stomach and a little allergic reaction to some of the antibiotics the first night, the drugs started working and my fever was down the next day. With my fever gone and my blood counts rising today, I was able to be discharged earlier than expected!

I am continuing to rest and take multiple antibiotics at home. On Monday I will get my blood counts checked and will find out if I can keep on my treatment plan for next week. I am scheduled to have my last chemo treatment on Wendesday so I am praying that the doctors do not have to delay it because of this week. 

Again, thank you all for the support. I will keep you updated on what the oncologist says on Monday. 

But those who hope in the Lord  will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

– Isaiah 40:31

See you soon Spokane!

As I sit here on my layover in PHX, feelings of anticipation and excitement are running through my mind. I’ve been thinking about this day for a long time now and to know that it will be reality in just a few hours puts a big smile on my face. I can’t wait to get off the plane and see my parents, to meet up with my best friends and family, to pet my dog and to breath in that nice cold Spokane air! 

I look forward to getting in as much face time with my loved ones and take Sadie on at least one a walk to the Rockwood Bakery once before it’s chemo time this week:)

Updates:

A little change in plans for this round, I will be having chemo on Monday instead of Tuesday. 

I will be in Spokane till the 20th of December. 

I have 3 more treatments of chemo left! My last one being December 6th. 

Trevor will arrive December 7th (yay)!

I miss my loved ones in SC already but I sure am excited too see you today Spokane ❤️

Home is where the heart is

After some difficult weeks, talks with my family, oncologists, professors and boss man, I’ve decided to finish my treatments back in Spokane. Now that plans are made and tickets booked, I feel a huge sense of relief and excitement to be going home. Although being away from Trevor (he will stay and finish the semester) is not ideal and I will miss my best friend tremendously, we both decided that it will be best for me. We’ve handled much longer than 4 weeks away from each other and FaceTime will become our favorite app again:) 

Even though I know I’ll be freezing my bald head off in Spokane, the thought of being with my family and friends in the place I am most comfortable in warms my heart. 

One of my favorite verses to find comfort in:

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

John 16:33

I’ll be flying back November 5th (A big thank you to Randy Clark for helping me with my flights!) and going back to SC in January for the new school semester. I’m going to continue to finish my classes this semsester from home, as my professors are willing to be flexible and work with me.

The pre-meds and Benadryl are starting to kick in at chemo this morning as I finish up this post. Almost one more round done and closer to the end! After this round I will have 3 treatments left.

See you soon Spokane! Thank you everyone for the support ❤️ I’ll miss my SC family but I’ll be back soon and cancer free! 

Bald is the new black

Now that chemo has successfully taken away my hair, most of my eyebrows, and eyelashes are coming out everyday, I figured this title was now appropriate 🙂

Friends and family, I’m sorry for my blog update absence.  I find it hard to write an update unless I have positive things to say and a healthy mindset.

To be honest, I had a rough month of treatment, taking it’s toll on me physically and emotionally. I was not comfortable with my oncologist and the care I was receiving. I was drained from my treatments, each seeming to be more difficult. I was emotionally not preparing for chemo week which made my recovery worse. I was having a hard time handling everything in general and I felt like I was digging myself deeper and deeper into negativity.

After some much needed talks with my husband the other weekend, I finally found myself back on track. We reached out to our families, realizing we needed more help and we switched to an oncologist that is the better fit for me. Both, not easy to do.

My husband and my oncologist from Spokane helped me be my own patient advocate. Everyone should be comfortable with their doctor, able to ask questions and feel cared for. Especially with something like cancer, where I will be going in for blood work, scans, and check up visits for years after my last chemo.

Asking for help is a difficult idea for me. The last thing I want to do is inconvenience my loved ones. I have had so much support and generosity from the start, I feel unworthy. When I was home in Spokane everything just seemed easier… more positive. Since I’ve been back in SC I find myself putting on a happy face and acting like everything is okay and that I feel okay, when I really do not. Trevor and I had some talks about how that might not be the best way for me to handle this when I am struggling, that it IS OKAY to ask for help.

Then they cry to the Lord in their trouble, and he saves them. He calms the storm and stills the waves. What a blessing is that stillness as he brings them safely into harbor!

Psalm 107:28-30

And I am so glad that we did. My parents made plane tickets right away and are visiting us right now. I get to see my sister and her family next weekend. Two of my best friends are coming to visit in November and my mom will return for my final round of chemo in December!

God is good and I have so much to be thankful for and look forward to. Trevor and I talk about our future plans all of the time to help us keep perspective on things. I will not be sick forever and we will continue to reach and accomplish all of our goals that we had before I got cancer. I can do this. Thank you everyone who has been helping me realize that. Thank you friends and family that keep sending messages, postings on social media, donating to my fund. YOU are teaching and showing me the way of how I can be a generous, caring person and faithful person.

 

I also wanted to share that two people/families that I know recently been diagnosed with cancer and it has been weighing heavy on my heart. If you would like to send a prayer, message of encouragement, or donation you can click on the links below. I know how much every prayer counts.

https://www.gofundme.com/2teqpxg4

https://www.gofundme.com/DLOUHYSTRONG?brandedshare=1&d=120270357