Chandler, Boundaries and Bacon

Yet again I am starting a post by sharing why it has been so long since I last posted. I have a bit of a better reason this time, as some of the rules of the trial have changed and I am not allowed to post details of the trial on social media. I can’t talk about my protein levels, results, reactions, etc. But I can talk generically. In that spirit, I wanted to share a portion of a paper I am writing about ethically integrating my beliefs about God’s sovereignty and omniscience (all knowing) into my counseling practice.

If you read that and immediately pulled a Chandler, I wouldn’t blame you especially if you are not in the counseling world. However, if you choose to read on, you will see that it is a part of the paper I chose to include a bit of my personal experience with the trial and how it has helped me to understand clients better as I work as a counselor.

The reason I wanted to share this is that despite the fact that this is not my current status in life,

God has blessed me greatly and has used this difficult time in my life for His glory. I hope it is encouraging to you as I know we all have things we are struggling with and maybe don’t understand God’s purpose for those things yet. As always, thanks for reading!

“As I have sought to understand these aspects of God’s essence, God has used a personal experience to teach and humble me. For the sake of space and efficiency, a long and emotional journey will be summarized to fit in a paragraph. I was born with a metabolic disorder (PKU) that keeps my body from being able to process protein. My life has been blessed but not easy due to this disorder. In recent years, various clinical trials for treatments have come out that I have participated in. The trials have been difficult emotionally and physically and so far, none have had the desired results*** for me but have healed others with the same disorder. I have struggled to understand why God, who has both the knowledge of my suffering and the ability to heal me, has not yet chosen to heal me. As I ask these questions still today, His response remains the same. He reminds me of other aspects of His Being. He reminds me that an understanding of His nature does not mean focusing on one or two parts of His whole Being. He reminds me that His nature also includes His goodness and omnipresence. He is with me in my suffering, He knows it better than I do. He understands my suffering, while I do not. In His sovereignty and His omniscience, He has a purpose for the imperfections of my body. Because I know that He is good, I know His purposes are good. I may never know or understand His reasons for my suffering, but I can rest knowing that He has one and it is good. His purposes are greater than mine, and with a Kingdom focus, I can rest in that knowledge.

I share this, because it is through this personal experience that I have begun to be able to integrate and understand God’s sovereignty and omniscience into my counseling. Furthermore, it has allowed me to have a unique perspective as I work with clients who have yet to see healing in their lives as well. As God has been a part of my journey from before I was even born, so has He been a part of my client’s lives. He sees the whole picture, while I as their counselor receive only a small picture. He knows more about my client’s than even they do. He has the power to heal if and when He chooses. In His omniscience, He knows every aspect of my client’s lives and He knows their every need and desire. In His sovereignty, He can use me as a tool of healing in my client’s lives, if He so chooses.”

***Please note the “so far,” in this sentence. And when I say desired results, please remember that I entered this trial hoping for the results of a completely normal diet. If you, as my loved ones, want to know what my diet is like currently we can talk in person.

Beholding my God

It’s been quite a long time since I last posted anything on here. There are a few reasons for that, but the main one was that I did not think I had anything of significance to say. This trial has been a very long road and I have had to learn a lot about myself in the process. The past couple months have been a time of routine. I wake up, take my premeds, wait an hour and a half, take my medication out of the fridge, wait 30 minutes and then do both injections then continue on with my day. Once a month (soon to be every other month) I travel to Kentucky for an appointment which can take anywhere from an hour to four hours then get on a plane and come home. In between appointments I get emails and phone calls from the clinic and they check on me and tell me how my protein levels are.

In the past few months my levels have remained in the 600-850 range (normal, non-PKU levels are like 150-200 or so, I started the trial at about 1080). This has been disappointing to me especially since I have seen my levels at 360 since starting the trial (that was a great day :)). I was hoping to progressively decrease and see progress. That has not happened. However, I haven’t progressively increased either. I have gone up and down remaining around 600-850. I have had some really difficult days where my body and my mind are just really affected by the protein levels  (I have been eating more protein per day than at any point in my life for the trial, when the medication works well I function fine, when it does not work well, I can feel it mentally, physically and emotionally). To the point that I asked my dietitian and doctor if I could decrease my daily protein intake in order to be able to handle school and my upcoming internship. They have allowed me to go down to 18g a day rather than 20g.

Recently, when people ask me how the trial is going, I honestly don’t know how to answer. I have heard from other people in the trial who take a couple years to see the response they hoped for. As of July, I will have been in the trial 1 year. As of October, I will have received the medication daily for 1 year. And as of February 2017 I will have been on this current dose daily for 1 year. So when I look at the big picture, I see a lot of waiting in my future. I wish I had lots of fun and exciting updates to give you all, because lets be honest, that is what we all want. In our culture, we don’t like waiting, we like immediate results. 1 year is enough of waiting right? Why can’t we just know?!

I don’t know why I am not seeing the results I want. It is a weird feeling when you realize how powerless you are over your own body. I can tell you that God’s timing is good. Abraham and Sarah had to wait many years to see God deliver in His promise to give them children and make them into a great nation. Joseph was sold into slavery by his brothers and imprisoned and had to wait on the Lord to deliver Him and to reveal His purposes for all the difficult things he had been through. I know that God has not promised me that this trial will work or that I will one day be healed of PKU. The reality of it is that I may never be healed of PKU until heaven. But He has promised me that there is purpose in this trial and in this waiting. The not knowing and the frequent let downs of knowing my body isn’t responding how I want it to is really, really difficult. Despite the emotional roller coaster of this trial, I am SO blessed and thankful that there is progress being made in the treatment of PKU. I am SO blessed for friends and family who are supporting me, loving me, encouraging me, checking in on me and helping me through the bad days.

I’m sorry I don’t have an exciting and fun post for you today. But I want to end with the lyrics of a song that we sang at church a few Sundays ago that brought tears to my eyes. I was having a rough PKU day and was blessed with God’s presence as He turned my eyes to HIM and what HE was doing. He removed my focus from being on myself and my struggle to seeing HIM. He is all powerful and so good. If we wanted to me to free of PKU today, then I would be. He is calling me to patience and to faith. Faith that He is good and that my struggles will be used to further His Kingdom.

Behold Our God

Who has held the oceans in His hands?
Who has numbered every grain of sand?
Kings and nations tremble at His voice
All creation rises to rejoice

Behold our God seated on His throne
Come let us adore Him
Behold our King nothing can compare
Come let us adore Him!

Who has given counsel to the Lord?
Who can question any of His Words?
Who can teach the One who knows all things?
Who can fathom all His wondrous deeds?

Who has felt the nails upon His hands
Bearing all the guilt of sinful man?
God eternal humbled to the grave
Jesus, Savior risen now to reign!

You will reign forever!
Let Your glory fill the earth

I can’t promise you the good news that the trial will work. But I can promise you the good news that God is loving, forgiving, powerful and good. I can promise you that because of Jesus Christ dying on the cross and forgiving me of my many sins, I will be in heaven one day and on that day I will be healed of PKU. Big picture…that is the BEST news I can write about.

Praying for Patience

Hey everyone!

First of all, I’m sorry it’s been so long since my last post! A follower recently asked for an update and I realized that somehow three months have gone by and I have not updated you all on what has been going on with the trial! So thanks for the reminder!

These last few months have been quite hectic between the commitments of the trial and with my school work. I hope everyone in the PKU world out there had a great holiday season and was able to improvise the normal festive foods in order to have some great meals! The holidays were always my favorite because my family’s Thanksgiving and
Christmas meals have way more side options than normal. And let’s be honest, PKUers are all about some sides! I cannot count the times I have ordered strictly from the side
menu at a restaurant. If I had a dollar for every weird look that I have received from a waiter, I could pay for grad school!

Alright, I’ll stop babbling about my weird eating habits and get to the trial.

In the last post, I shared that I was being moved to the next phase of the trials. Technically, it is a whole new trial itself. This new trial has 4 phases, I skipped over phases 2-3 due to the timing of when I joined. The first phase had me continue my daily 20mg doses and come into the clinic in KY every other week. The 2nd and 3rd phases which I skipped, included the possibility of being given a placebo injection, so I am very thankful to have skipped that.

As of about 3.5 weeks ago, I was moved to phase 4. In this phase, all the participants receive 40mg a day, which is two shots worth of medicine. The logistics of this phase were initially a nightmare. The medicine has to be kept at a certain temperature and 2/3 of the medication I had with me went bad. Then we got some bad weather here in NC and this caused a delay in when my replacement medicine arrived. So to shorten a very long and complicated story, I had to go a total of three days without receiving any medication. I also had to be observed for the first two weeks of this phase which also added a lot of logistical headaches. HOWEVER, despite the struggles of obtaining the medication and meeting the study requirements, I have been reacting well to this new dosage. Before you get too excited, I have no idea if the new dosage is working any better. But I am not experiencing any negative side effects to this new dosage, which was unexpected since I had such uncomfortable reactions at the beginning of the trial.

Now to what everyone wants to know. I will have my first blood level taken next week to see if this new dosage is improving my PHE levels at all. To those in the non-PKU world, PHE is basically one way to talk about the amount of protein in my blood. Lower levels = good, high levels = bad.

The last I had heard about my PHE levels were when I was still on 20mg and my levels were still going up and down. This is with me eating the same amount of protein every day. Which means that the drugs effectiveness is not consistent yet. From what I hear, this is normal for those in the trial.

So all-in-all, despite the long period of time that has passed since my last update, there is not a whole lot of news. I am not in the last phase of the trial and will be here until the drug is FDA approved. So it could be years potentially. Right now I go back to the clinic every month but will eventually be there only every other month.

Emotionally, it’s been a roller coaster like I have shared before. Since I was at 20mg and my levels were not as low as I had hoped and were definitely not consistent, I was and am trying not to be disappointed. I hope the 40 mg will make a significant difference. However, I do not feel any different, which is normally a telling sign of lower PHE levels. So right now, I don’t think there is a significant difference but we will see! I believe I can go as high as 60 mg if needed. So even if 40 mg isn’t that much of a difference, there is still hope!

Right now I really appreciate prayers for the trial, for patience, for God’s will to be done and for me as I try to accept whatever God’s will is. I hope to one day have that great party to celebrate a successful treatment, but in reality I do not know if it will happen. My prayers are that if I do not get to have that party, that God has something better in store for me. And if I never get to have that party on earth, that great meal in heaven will just be that much better 🙂

Choosing my Identity

Hi friends,

Let’s be honest, blogging is definitely not my thing. I am horrible with keeping up with blog posts. However, I am feeling like a pretty official blogger right now as I am sitting in Starbucks with a cup of coffee typing away.  But to be even more honest. I’m writing this blog post more for cathartic relief than anything. I’m actually supposed to be writing a paper right now, however my mind was not on school but on the latest update I got today about the trial.

Since it’s been somewhere between a year and forever since I have updated you all, I’ll give you a quick recap of whats been going on recently. I believe that in the last blog  I shared the great news that my protein levels were down 35% (reminder: down is good, up is bad). My levels at the next visit were 22% lower than that. All very exciting!

I went back last week where they officially closed me out of that phase of the study and began the paperwork to move me on to the next phase. Then I went back again this week to begin the new study. For this study I will be in Kentucky every other week for 12 weeks for part 1 and then once a month leading up to every other month for part 4 (I am skipping part 2 and 3…that’s a good thing!). I could potentially be in this study for four years if needed, from what i understand it all depends on the FDA approval process. The fact that they moved everyone to the new study is a good sign that we are well on the way to approval.

That is the short version of a lot of updates in the trial. But now to the part that is really on my mind. This morning I received an email that my levels were up again, not to the degree that they were pre-medication, but still they were up. For those who understand PKU terms, my October level was 594 (which is pretty low considering I’m eating 20g of protein a day). My level from last week is 817. I do not have much information yet, I’m still waiting to hear back from the doctor. I was told, however, that it is not unusual for levels to go up and down for a while while in the trial.

So since this is normal, I should be good right? Logically, yes. However, I can’t help feeling anxious. It hit me this morning how little control I have over my body. I can follow the trials rules and guidelines to the letter, but that does not mean it will work. I can pray, I can be optimistic, I can say that I will be OK no matter what the results are and I can say I trust in the Lord, but that does not guarantee me anything. Throughout this process I have known that, I have known that just because I pray and trust in the Lord, that does not mean I will get what I want. And I know that if this doesn’t work for me, it does not change who God is and who He is not. He is good and loving no matter what. He is not a vending machine (excuse the cliché) and His great love from me means that He gives me what is best for me and for His Kingdom rather than what I want in the moment. Sometimes I can get caught up in the excitement and the joy of having a new hope and forget that just because I want something, does not mean it’s guaranteed.

That probably sounds like a huge bummer to everyone who has been so hopeful and encouraging to me. Believe me, my optimism is not gone, my prayers have not stopped, my hope is still there and the Lord is always good. But I think that sometimes, I need a good dose of reality. The reality is that God will use this for His good and for His glory, it just may not play out how I want it to. Again, that does not mean it won’t. I’m not guaranteed anything in this lifetime except for what the Lord has promised me. So instead of putting my entire future, my joy, my hope, my worth and my identity in PKU and this trial, I am choosing to place those things in the Lord. It is a way more secure place to be than putting my everything into my how my body responds to a clinical trial.

Thank you friends for reading my personal Starbucks therapy session and for hearing me out! Hopefully I wasn’t a huge bummer to you! Thanks for walking through this with me, love you all!

A Time to Celebrate

This is probably the weirdest post for me to write, because while I am trying to update all of you and explain all that has been going on recently, I am still trying to adjust to it. But don’t worry, this is the post that I am also most excited to write 🙂

As of a week and two days ago, I was officially on my full dose. The days that followed were pretty rough as my body tried to adjust to it. I had several days in a row where my body was achy all over and I was extremely fatigued. Very similar feeling to having the flu. This was really discouraging to me because in my head it seemed like things were getting worse.

Two days ago, I had my October visit in Kentucky. This was  a big appointment for me. At this appointment, I was going to find out if I was going to be allowed to move to the next phase of the trial or not. I was so anxious about that fact, I forgot to even worry about whether or not the drug was actually working.

I found out that Yes, I will most likely be moved to the next trial. This means that the current trial I am in will be closed out in the middle of November, and a week later I will go back and have my initial visit for the next trial.

While they were explaining this process to me and the plans involved, they slipped in a bit of information that made everything in me freeze as I tried to comprehend what they just told me. In between explaining logistical issues for ending this trial and beginning the next one, they told me THAT THE DRUG IS WORKING! My dad was with me at this appointment and upon hearing those words, we both stopped in our tracks. We might have made them repeat themselves like thirty times. As of my September visit (4 weeks before this appointment) my protein levels had decreased by 35%!!! Now I am sure you don’t remember, but at this point I was only on 10mg ONCE a week. At the appointment I just had, I was at 20 mg EVERY DAY. Needless to say, I am very anxious to get back the results of my most recent blood work. I should know in about a week or so if my levels have continued to decrease.

After finding this out, I immediately texted several family members and a few friends. Telling them was just as emotional for me as it was to hear the news myself. I have no idea if my levels will continue to decrease, or if 35% decrease is all I get. But either way, praise God! Even this amount will allow me much more flexibility in my diet in the future.

Now the next question everyone asks, is “so are they changing your diet now?” And the answer is no, not yet. They might, but there has been no indication of that so far. But that does not mean they won’t as my levels continue to decrease. You can be sure that if that happens, I will be letting everyone know. Probably even random people on the street who have no idea what PKU is. Just Kidding….maybe.

Although it might be obvious to everyone in the world that I’m experiencing pizza for the first time when I eat it like that      ⇚⇚⇚⇚.

While a good part of me is still in shock, I find myself clinging to the Lord even more. The best I can explain my emotions about this trial and even more so now that I found out that the drug is so far 35% effective, is that it feels like the rug was ripped out from under me, I just can’t tell if I’m flying or falling yet. That might seem weird in light of the good news I have just received, but this trial, as amazing as it is, is forcing me to emotionally go into unknown territory. I never even imagined a life (realistically that is) in which I did not have to live within the limits of the PKU diet and lifestyle. All of a sudden, I am able to dream of things that I was too scared to dream before, and more and more they are slowly seeming more likely. This is crazy. And I am so overwhelmed with God’s grace and blessings on me. I had accepted and even praised Him for my PKU, and now He is offering me something so beyond what I even thought to pray for.

I am thankful and undeserving because I know not everyone who deals with illness, disease or disorders have this opportunity. The Lord is our Hope and our Healer, and I look forward to the day when we all have new, healthy and holy bodies.

2 Corinthians 5:5-7 “For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. ² We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. ³ For we will put on heavenly bodies; we will not be spirits without bodies.^{[a] 4} While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. ⁵ God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.”

Until that time, I will rely on Him, even if I don’t get the earthly healing that I long for. “But He said to me ‘My grace is sufficient for you, My power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest in me.” 2 Corinthians 12:9.

Patience in Waiting

The past few weeks have been a bit crazy for me as I continue to adjust to the trial requirements and the effects of the drug treatment. As I shared in my last post, I have been experiencing side effects that have been at best uncomfortable and at worst painful. However, I am fortunate that I have not had severe side effects. The side effects I have had have been mostly classified as “moderate.” I have also been surprised to see how my body has reacted to my “new” diet. As I have shared before, the trial requires me to maintain a stable level of protein intake per day so that they can use that as a starting point to see if the drug is working to bring down my protein levels. The amount of protein per day is not the same as what my normal PKU dietitian requires. The dietitian and doctors of the trial want me to follow an amount that is realistic for me for me to keep for the duration of the trial. What we came to as a realistic amount, is about double what my ideal diet is from my normal dietitian. That being said, while this is much more obtainable, I have never been consistently on this amount of protein per day. I have begun to feel the effects of it in my mood, my memory, my ability to pay attention in class and to retain information. While I believe it is manageable (and hopefully short term if the drug works) this is a side effect that I was not expecting. So these past few weeks have been a time of adjustment towards my new diet and the continued increase of the drug.

Today was my last day of a “trial week.” In this trial week I have a total of 40 mg which involved dosing 10 mg every other day. Starting tomorrow I will begin a 70 mg week where I dose 10 mg every day until next Tuesday. That Wednesday I will begin my first week at my full dose of 20 mg every day. I am hoping to see the drug begin to take effect two weeks into my full dosing.

Prayers would really be appreciated in this time! I have several things that I would really appreciate some prayer on:

1. The higher amounts of the drug have caused severe fatigue on the days of injection. I am worried about being able to handle my normal day-to-day life with having daily injections. Please pray that my body becomes accustomed to the drug and that the fatigue begins to wear off.
2. Please pray for the reactions to go down (the clinic is predicting them to go down once I am on my full dose for a couple weeks). And please pray for me as I continue to deal with the reactions.
3. There has been some issues with when the cut off date will be for this trial. Meaning, there was been some back and forth about when the end date should be for when I am required to have responded to the drug. If i respond, I get moved to the next trial. If I don’t then I do not get to move on. Please pray for this process and that I will be given enough time to respond.
4. Please pray for the drug to work.
5. Ultimately, please pray that the Lord use this time in my life to glorify Him no matter what the results are. Please pray for me as I try to deal with whatever the results are and to be content in what the Lord provides.

Thank you friends and family for your prayers and your kind words as I have gone through this trial. I am constantly surprised and blessed by everyone’s thoughtfulness and concern. It means so much to me and this would be very difficult to do without your support. With everything that is going on with this trial it has been more difficult to focus on the other things in my life. Most the time school gets my attention second to the trial. However, I don’t want to forget to love and pursue the people in my life. With this trial it is easy for me to focus on myself and what I am going through. It is a sin I am confessing often to the Lord and asking forgiveness on. I would love to be praying for you all too. If you need prayer please message me with your requests, I would love to return the favor.

I also ask for your patience. With my protein levels where they are at, my mood is affected. I have been more moody than normal and even more introverted. While it is not an excuse, it has made reaching out to others more difficult and less natural. I have struggled with this side effect a lot because this is not how I want to be around others. So please be patient with me and know that I am trying to love you all the way that you have loved me and blessed me these past few months.

Lastly, I would like to end with these verses. The Lord has shown me throughout my life that I am not a mistake. The fact that I have PKU is not because God’s hand slipped when He made me. While I may not know all the reasons why God has allowed me to be born with PKU, I do know without a doubt that Psalms 139:13-16 applies to me just as it does to everyone else. I was delicately and intentionally created. I was made with a purpose and blessed with the chance to use PKU to glorify my Creator. It is my hope that this trial is even more of a chance to glorify Him and to allow myself to be used for His glory. While I really, really hope this new drug treatment works, my prayer is that the Lord will be glorified through me no matter what the results are. It is my hope that anyone with PKU or a child with PKU who reads this can leave knowing that they (or their child) are not a mistake. They are not incomplete. They were made by a loving creator who creates with love, care and purpose, even if we don’t always understand what that purpose is.

Riding the Roller Coaster

Hello Friends!

I know it has been quite awhile since my last post, mostly due to my regular end of the semester scramble to turn in all of the remaining assignments. For the first time since I started school I am finally on a break! I celebrated my freedom by going putt-putting with some friends of mine over labor day (I may or may not have posted this without them knowing…)

The word you are looking for to describe us is Glamorous

The other reason I hadn’t posted on here in a while is because the past few weeks of the trial have been an emotional roller coaster. As I told you all in my last post, I had a reaction to the drug. While that was not surprising to the medical staff on the trial, it was a rough weekend and a bit of a wake-up call for me. Since then I have reacted every time I have taken the drug.

To get you up to speed, I have now completed all of my weekly visits to KY where I received a 2.5 mg dose each week. I am now dosing at home and have been doing two doses of 2.5 mg a week to be a total of 5 mg a week. That was for two weeks. Starting this Saturday I will be doing one dose of 10 mg and the next week I will be in KY again and the plan for that week is to have two doses of 10 mg for a weekly total of 20 mg. As a reminder, the ultimate goal is to work me up to a dose of 20 mg per day.

So far for each 2.5 mg dose I have received, I have reacted with swelling, redness, itchiness, soreness and a hardening of the area of injection. I would say that the reactions are getting better with each injection, but very, very slowly. Right now I just have a lot of bruises at all the injection sites.

All of this explaining is to bring you up to speed and to help you understand the emotional roller coaster I have been on. During this time, a lot of the reality of this trial has begun to hit me. I have had many moments where I think “what am I doing to my body? Is it really worth it? what about the long-term effects of this drug? Am I being stupid and selfish for putting this in my body without even knowing if it will be worth it?” Then I have other times where I am convinced that the drug is going to work and that I will have all these new opportunities in front of me and I get so excited.

I have also had many conversations with people about the trial. Some people are so excited that I find myself wanting to join them in their excitement but then also feel like the responsibility is on me to prepare myself and everyone else for the possibility that this won’t work. Other conversations I have had with people who are familiar with the study have shared personal stories with me about their loved ones in the trial. Some were successful and some had rough reactions to the drug and decided to stop the trial. I frequently find myself very emotionally conflicted about how to feel about this trial. With the reactions I have had, I worry about what a higher dose will do to my body. The 10 mg dose on Saturday makes me particularly nervous (prayers would be appreciated!) because it will give me an idea what to expect each time I increase my dose. While I have had a weekly amount for two weeks of 5 mg, the individual doses have all been 2.5mg. This dose on Saturday will be the most I have ever put in my body in one dose.

I felt this picture exemplified my conflicting emotions of this trial quite nicely 🙂

I share all of this to explain why it has been hard for me to write this post and why I kept putting it off. I put it off because my thoughts and emotions about this trial are all over the place and I did not know how to put into words what I was experiencing. It hasn’t been all good but it hasn’t been all bad. Like I said, it’s an emotional roller coaster. I have my times where I get to sit and talk with loved ones about the exciting possibility of what the future could hold for me. And then I have those moments where the unpredictability of the future really hits me hard.

For those of you who are walking with me in this trial, I want you to know how much I appreciate you! I am not writing this to tell you to stop talking about all the amazing foods I could eat in the future and all the limitations that would be lifted. And for those of you talking to me about the reality of the situation, I am not writing to tell you to lie or stop sharing your stories or to sugar coat things. I write this to tell you all where I am at. When I am struggling to be optimistic in the trial I need people to encourage me with hope and with God’s faithfulness. At the same time, I need people to sit with me in the reality of the trial. It is a trial and it may or may not work. What I need is all of you to do exactly what you have been doing: walking with through the ups and downs of the trial. Not letting me get too down about reactions and helping me to continue to trust in the One who has a much better plan for me than my own.

You all have been so encouraging to me. For one thing, it surprises me that anyone would be interested in reading these blogs (let’s be honest, I am not the typical blogger). And then the fact that you all pursue me for updates and encourage me along the way has been so helpful. I could not do this trial without all of your support and encouragement! Thank you all for reading!

As always, if you have questions about the trial or PKU or my experience please feel free to ask!

Still Daring to Dream

Despite all my hopes of not experiencing any adverse side effects of the drug, I have officially had my first one. Last Thursday was my second dose of the drug and the first time that I injected it myself, and let me tell you…it was just weird to be the one giving myself a shot. On Friday I noticed that the area on my stomach where I had injected the drug had gotten red, about the size of a quarter. By Saturday morning it was about three times that size and on the other side of my stomach too (the place where I had been injected the week before). By Saturday night those areas had started to harden and were very sore. The clinic had me on benadryl, ibuprofen and ice until things cleared up. It was a rough weekend (most of which I was very out of it thanks to the benadryl) but I am thankful to say that I haven’t experienced any more pain since Monday morning and the redness has gone down considerably. The nurses were very supportive and didn’t even mind talking to me on the phone during the weekend when they were technically off work. They had an on call pager and always called me back right away. Apparently this is a very normal reaction and they said it should go away after a few days and by the fourth week of the trial most people stop having reactions all together.

While the weekend was pretty rough between the pain of the reaction and the effect the benadryl had on me, I am very thankful that I did not have a worse reaction. It’s my understanding that no one has had a severe reaction, but because it is a drug that is under trial I have been told about all these scary things that might happen and I even have to carry an Epi-pen with me everywhere I go. So that has had me a bit nervous about how I will react. The hospital staff and I are hopeful that this is the worst of it for me.

At this point, some people may be thinking I am crazy for participating in a drug trial, and if that’s you, I don’t blame you. However, I am still 100% sure this is what I need to be doing right now. This study is a HUGE step in an encouraging direction for people with PKU. I feel like I am in a perfect stage of life to be able to handle the demands of an out-of-state clinical trial. I am in grad school, so all I do is study (something I can do on a plane, in an airport or in a hospital as easily as I can do at home). I do not have the commitment of a marriage or children right now and I am old enough to make this decision with the discernment of knowing what I am getting into. All that being said, I love that I can do this for myself and for other people with PKU who may not be able to participate in the trial. And selfishly, if the drug works, participating in the trial means access to the drug before it is available on the market. I am very excited to see how this new drug will work for me and the rest of the PKU community. It brings a hope many of us never thought we would have.

Growing up and through college I would always joke around with my friends that if there is ever a cure or a treatment for PKU that allowed me to eat normally, then I would throw a huge party. To get in everyone had to bring some kind of food or dish that I haven’t been able to eat before then. It was always a joke, something I sadly never actually thought I would really get to do. Well…start planning what you would bring to that party because it might just happen (so scary to even type that!)

Stepping out in Faith

I have been receiving a lot of questions lately about the trial, (and I love that! It means so much to me that all of you are so interested!) so I wanted to answer a lot of the more common ones.

How often do you have to go to Kentucky for the trial?

For the first four official appointments (not including the screening appointment), I go once a week. Today was my second weekly appointment. After that I will start going once a month for approximately 9 months. This will depend on how quickly I respond to the drug. Some people have taken longer, some shorter. If it works well then they will transfer me to an extension study so that I can stay on the drug until the drug is approved by the FDA and I can get access to it on my own.

Isn’t it risky to be in a drug trial?

Yes and no. For this particular trial, they are in the third stage of testing. This means that they have already tested for safety and they are now testing for efficacy. While there are definitely some risks, I am far enough down the line of trials that they already have a basic idea of how I should respond and what the negative side effects might be.

What are the risks?

So far the main side effects they have seen are soreness of the site of injection, joint pain and rash. As of now, I have only had two small doses and I have not had any negative side effects (praise God!). To be honest, the biggest risk in my mind is the drug not working. It would be really difficult for me at this point if it did not work on me. I have tried to not get too attached to the idea of the drug working, but to be honest that has not worked at all. Right now I am just praying for God to grant me the ability to handle whatever this trial brings, both positive and negative.

What are the benefits?

During my last appointment, I found out about a girl with PKU who was in an earlier trial. The drug has worked so well on her that she is able to maintain a COMPLETELY normal diet (my brain pretty much exploded when I heard that). She is able to maintain a normal diet on only 8mg/day of the drug. To give you perspective, my last two appointments I have received 2.5mg/wk as a small dose to test my reaction and build up my tolerance. I will eventually be worked up to 20mg/day. This trial has two randomized groups in it, one that will receive 20mg/day and one that will receive 40mg/day (SO thankful there was not a placebo group!). So that gives you an idea of how small a dose 8mg/day is. Each person with PKU is different, so the drug could work for me on a low dose or they could need to work me up to a higher dose or it could not work at all. However, the treatment team and my personal dietician are hopeful that it will at least improve my ability to handle protein. Whether that means I can eat more than I do now or it means that I can have a completely normal diet has yet to be seen.

Those are just some basic answers for you! If you have more questions, especially those of you in the PKU world, I would love to answer them. Just comment on the blog and I’ll get you an answer!

My hope is that this drug will improve the quality of life for people with PKU and if it does not by itself, that it will bring the research one step closer to doing so. Despite my fears of the drug not working, I am so thankful for the experience already. I have gotten to meet some great people who are working hard to help those of us with PKU. It is easy with such a rare disease to feel ignored or unnoticed in the big picture. Its hard for us to get our medical food covered by insurance and it can be really expensive to cover personally. And there have been many times where I have been to the doctor or talked to a nurse and they have no idea what PKU is. I completely understand that, but when you are hoping for a scientific discovery to happen to change your life, it can be disheartening when no one with resources or power seems to know what PKU is. This trial has shown me so many people who care and are doing something about it, things that I can’t do. It has been so encouraging to experience first hand the work that is being done with PKU. I have also gotten to travel (which I love!), stay in a fancy hotel (hosting a random conference each time I go…so far on the list is: 8000 Nazarene students, the society for formal dress ware and a conference for black deaf people…that one I learned the hard way by trying to talk to one of the participants on the elevator…oops) and eat very well (when you don’t eat meat, a $25 meal budget can go a longggg way).

The last thing I want to say today is how thankful I am for all the people who have been with me on this journey. The people who have been with me through the difficult, embarrassing and confusing times. Those same people helped me to laugh about PKU and to allow it to become a part of who I am rather than a crutch or blemish. When I was born, the grandmother whom I am named after encouraged my mom by telling her that by the time I was older medial research would come a long way and there will be other options for treatment. Now in this time I am in, those words almost seem prophetic. My mom has told me that story before, and while I knew it was possible, I never really believed. I guess now is the time to starting believing and to step out in faith knowing that God will catch me if I fall.

A Trial of Grace

Many of you have heard by now that I have decided to keep a blog about my experiences participating in a clinical trial for a drug that could be a treatment for PKU. I have been incredibly blessed by the number of people who care about my experience and the outcome of the trial. So blessed in fact, that I have had trouble updating everyone who wants to be kept in the loop (a great problem to have!). I have decided to keep this blog so that I can keep everyone informed who wants to be. This includes personal friends and family but also those in the PKU community who, like me, have a lot of hope invested in this trial.

A little background

Before I begin sharing with you about the trial, I want to give you all some background about me, my experience with PKU and what PKU is for those who may not know.

PKU (Phenylketonuria) is a genetic metabolic disorder that affects about 1 in 16,000 people. Those of us with PKU lack the enzyme that breaks down one of the amino acids in protein, Phenylalanine. If untreated, PKU can result in mental retardation or severe mental deficiency. As of now, the only known treatment is a severely strict low protein diet. A low protein diet means no meat (believe it or not, it is possible to be American and have never had a hot dog at a baseball game), no dairy, no nuts, no soy, no beans and very little grains. This is a diet that I have followed my whole life and believe me, it has not been an easy journey.

My name is Tricia Jackson and I am a 25 yr old graduate student studying Christian Counseling. PKU has always been a huge part of my life and has been a significant part in shaping who I am today. While PKU has been a challenge, some days more so than others, I am thankful that I was born with it. I know I have missed out on some things, but I also have been able to experience and learn things that many people do not get to experience. It is difficult to put all of those things into words, but PKU has taught me to trust God with my present and my future in a way that many have not had to. I have also been able to see God’s blessing in my life very clearly. The Lord allowed me to be born into an incredible family who helped me to deal with the challenges of PKU. He gave me great friends who look out for me and encourage me. When I was born, my parents were told that I would struggle with math in school and that certain tasks would be hard for me. The Lord blessed me with great grades in school, a bachelors degree with honors and the ability to go to graduate school.

PKU brings a lot of challenges as well and those challenges tend to change with each new phase of life. As a child, I sometimes felt insecure about bringing my “special food” to friends houses or birthday parties. As a teenager, I worried about fitting in and not standing out too much. As a college student, I struggled to follow my diet with the busy and unpredictable lifestyle that college brings. And as a young adult, I struggle with trying to keep my diet healthy, low protein and filling (a very difficult thing to do!).

A New Hope (and yes I do realize that is also the title of Star Wars IV, thank you brothers)

In April of 2015, I received a mass email that I almost deleted. Fortunately, I decided to read it first. The email was about a trial of a drug that could potentially increase the amount of protein that my body can handle. It would be a daily injection that would give my body a substitute for the enzyme I lack. I decided to look into it, honestly, I was thinking I wouldn’t qualify or wouldn’t be able to afford it, but what could it hurt to find out more information? Several emails later, I find out that I do qualify and the study would cover ALL of my trial related expenses, including flying me to the nearest location (Louisville, Kentucky). Now, as of yesterday, July 30. I am officially enrolled in the trial and have received my first injection of the drug (so far no bad reactions to it!).

This has been a crazy experience for me because I never really thought that there would be treatment for PKU other than a strict diet. While I have no idea what opportunities this drug will give me and if it will even work, knowing that it has a good possibility of working at least to some extent is blowing my mind. You mean that there could be a day when I get to try peanut butter? Or be able to order a salad WITH cheese? Or get to finally taste what REAL pizza tastes like (I know, I have some BIG dreams, people)? This is why I am calling this blog “a trial of grace.” I have been given opportunities to dream of things I was always too scared to dream. I was content (OK, if we are being honest, content most the time) with the idea of having to follow a strict diet my entire life, but God in His infinite grace is opening doors in the fields of PKU research. He is providing me with a hope I never thought I had. I knew one day, in heaven, I would receive a new body (with all the right enzymes), but I never really thought I would have this opportunity now. And believe me, I am fully aware that this might not work, but the idea that research is where it is now, is in itself a hope that I never thought I could have.

Thanks for reading! And I promise the next blogs won’t be this long!