Well, after countless doctors’ opinions and a change of heart every half hour for a week, we’re back in Philadelphia for treatment. We opted for the intra-arterial chemotherapy from Dr. Shields. The procedure itself makes me very anxious, but in the end, this was best for our family for several reasons. It will hopefully kill the tumor in less than half the time, and will potentially cause fewer systemic side effects for Easton. He could lose his hair, he could be at risk for infection, but these aren’t guaranteed the way they would have been with systemic chemo. There are some scary risks during the procedure and to his eye afterward, but we know we’re in the care of competent doctors who are sought after by families all over the world for this treatment.

We were up all night before the flight out yesterday, still unsure of whether or not to come. Even when we got here and went to the doctor for pre-op, we didn’t know if we had made the right call. Our worst and weakest moment was last night. I was feeding Easton his bottle, and I just started bawling. He was looking up at me with those innocent eyes, studying my every move, every expression, taking cues for how he should feel and respond. It reminded me that this little life relies on us for absolutely everything, and in that moment, the weight of our decision crushed me. What if something terrible happens during the procedure? What if he wakes up blind, or worse? He is trusting us to keep him safe, and yet we chose the newer, more complex procedure with definite risks. Scott was ready to call and cancel, and I was ready to let him. There was so much guilt, so much fear. I prayed and prayed over him and tried to remind myself that there will be good and bad components of either treatment option. While we wholeheartedly trust that God is in control, we don’t always know exactly what that will like. We know that it may not be the vision WE have for our son and our family – this is where that little concept called faith comes into play. Once again, I fall short of what I’m called to do: I worry, I struggle with the unknown, I sometimes fear that God will use Easton for a purpose that doesn’t fall in line with my own selfish desires. THIS is where that little concept called grace comes into play. Thank goodness my doubts, fears, and selfishness have been forgiven before they ever even occurred. Thank goodness I have a Savior who has already paid the price for MY wrongdoing so that I may be worthy of a loving relationship with our Creator despite my shortcomings. It’s enough to bring peace over these worries and know that He deserves ALL the glory, no matter the outcome.

We checked in at Jefferson Hospital at 5:30am, and waited in pre-op until around 7:30am. We met with the anesthesiologist first, and then met the neurosurgeon, Dr. Jabbour. Dr. Shields controls the treatment call, which medicine and how much to use, and evaluates the tumor’s response, and Dr. Jabbour does the technical work of getting the medicine to the tumor. We knew how the procedure would work, but he took the time to draw out a picture of exactly what he was going to do and the alternate options he had if something didn’t go according to plan. He would insert a catheter into Easton’s femoral artery, then travel up through his aorta and carotid artery to the ophthalmic artery, which provides the blood supply to the eye. The medicine is given over a period of 30 minutes into this artery, then he pulls the catheter out. He does this procedure frequently, but it is quite complex. He explained the risks: small risk of stroke, small risk of blindness, risk that he would not be able to fit the microcatheter into the ophthalmic artery and be unable to perform the procedure, and risk that after this procedure, the artery shuts down and he is not able to perform this again. We won’t know if this happened until next month when the doctor goes in again and uses a dye to analyze the arteries before giving the second round of chemo.
I was able to walk Easton into the OR and be with him when he was put under. I hated leaving Scott alone; it was incredibly emotional and even the nurse was tearing up at our goodbye. After E was asleep, I gave him one last kiss and headed to the waiting area. The hospital was very good at keeping us informed. A nurse called my cell from the OR when they accessed his femoral artery and later when they accessed his ophthalmic artery, and Dr. Jabbour called when he was done to say everything went well. We were in the waiting room from 7:45-11:15, then met Easton in recovery. He had to be sedated for another 4 hours because he had to be still to prevent risk of bleeding. He woke up around 3:30, and after a little monitoring, we were released. We are monitoring his groin where the artery was accessed to make sure there is no bleeding, but aside from that, the directions are pretty simple. He’ll take half a baby aspirin each day for a week, but that’s about it. We’ll be scheduling his weekly blood work with our oncologist at home, and we’ll be back here in four weeks for another 5 days. For now, Easton is still pretty out of it, and we’ve had a very low key evening laying around in bed. We just have to stay in town for another 24 hours for monitoring, then we’re headed home!

Thank you to everyone who sent prayers and good vibes our way. They were felt in a BIG way today!

“In all your ways acknowledge Him, and he will make straight your paths.”

-Proverbs 3:6

Scott and I have prayed that the Lord would make our decision clear, that we would both be in full agreement of the choice, and that we would be at peace with it no matter what happens. We know we’re not alone in this, and we’ve seen Him speak to us clearly in many ways. But, we aren’t sure of the direction we’re supposed to take right now. The decision part of the journey has been difficult, and we feel that we could interpret certain “signs” in too many different ways. We just don’t have a clear sense of direction at this point, and continue to ask God for wisdom and guidance.

We’ve been reassured that although systemic chemo causes unwanted side effects during the course of treatment, improvements have been made so that there are very few long term risks of the medicine. It would be a grueling several months, but we would get through it. On the other hand, IAC would minimize these unwanted temporary side effects and potentially preserve more of his vision. But, the procedure scares me and we don’t know the long term effects of the treatment on his eye and/or brain development. We struggle with this: are we taking the shorter and seemingly easier road only to find we’ve created a longer one through unknown side effects of a newer procedure, or are we taking proper advantage of the advances in medicine that allow us to avoid systemic exposure to chemotherapy? There are several ways to look at it, and we go back and forth several times a day.

Yesterday, I was looking back through some emails that I have disregarded since all of this began. I subscribe to the Proverbs 31 Ministries daily devotionals, and the title of one I had missed was, “There is No Such Thing as a Perfect Decision.” The author, Lysa TerKeurst, talks about “analysis paralysis” when trying to make the perfect decision – that crippling feeling of being completely stuck between a rock and a hard place. But, she reminds us that NO choice will work out perfectly in every way. I find comfort in her words:

“My imperfections will never override God’s promises. God’s promises are not dependent on my ability to always choose well, but rather on His ability to use well.”

So, although our decision is still unclear, we can rest in the fact that we trust God beyond any fear we have of failure. We surrender this decision to Him, and will glorify Him throughout this journey no matter the outcome.

The flight to Memphis was a little hectic, and at this point Scott and I were emotionally and physically exhausted. My mom joined us, so thankfully we had some help with E. It was definitely worth the trip here, and we tried to convince ourselves to push through because we want to be able to say we did absolutely everything we could and explored every option possible for Easton’s sake.

St. Jude is a phenomenal place. They are so catering to every need, and have already thought of questions or services before we even knew we needed them. Upon arrival, we checked into the main registration at the hospital. There, they provided us with a host who explained our schedule for the day, took us to check in to housing, and then accompanied us to each appointment. At the end of the afternoon, the host showed us where we would report the next morning and explained where to go for housing. We were never left alone or wandering in what would have been a very overwhelming experience without help.

We were set up at the Tri Delta Place, the temporary family housing on campus. It holds a special place in my heart because I was a Tri Delta at A&M. I’ve always loved and taken pride in our philanthropy, but of course it takes on a whole new and deeper meaning now that my family was able to benefit from the services at the hospital. This place was incredible. It was comfortable with a bedroom and small living area, which was perfect for putting Easton down for naps and early bedtime while still having a place to hang out ourselves. There are laundry rooms on each floor, a toddler playroom, teen hangout room with computers and video games, outdoor covered playground, spacious living area with comfy chairs and couches, workout room, library room, and complimentary breakfast in the dining room each morning. There is a room with free toiletries and baby items for those who have to stay longer than intended. And here’s the most amazing part…it was all free of charge. Free. Of. Charge. Families who come to St. Jude do not have to pay for care, housing, meals, or most travel for the patient and one caregiver. It’s a research hospital, so you qualify for treatment if you meet the criteria of one of the clinical trials going on at the hospital at the time. St. Jude is doing a clinical trial on RB, but Easton’s chemo would not be experimental since his tumor is group B and not more advanced. He would receive normal protocol treatment (8 rounds of chemo and laser therapy), and the “research” part of his case would be additional testing to determine the effects of the chemotherapy, particularly the effects on his high frequency hearing. So really, the research would just be an added benefit of doing treatment here – more monitoring of the effects of the medicine with the ability to change treatments if they determined it was affecting his hearing.

We loved the team of doctors here, and they took the time to answer every single question we had this morning after Easton’s exam under anesthesia. The exam went well – they let me go back with him into the operating room to be put to sleep, and all three of us were able to be there when he woke up. He woke up scared, angry, and hungry, more so than the other two experiences with anesthesia, but other than that, he recovered nicely and had a pretty normal day afterward.

We also learned more about the state of his vision. The tumor affects his central vision, and it has already done irreparable damage to the retina. If he were to close his right eye, he would see only black in front of him, but have some peripheral vision around it. So, his left eye will always be his “bad eye.” His brain has already begun to shut off signals from this bad eye, so it will become a lazy eye (it will start to turn in or out from lack of use). We haven’t noticed this at all yet, but we know it’s coming. After chemo, we will consider patch therapy, where we patch over his strong eye to strengthen his weaker eye. It will depend on how damaged his left eye is; if he’s mostly blind in that eye, patching would do no good. I actually had to wear a patch as a child – my left eye was a lazy eye, though for a completely different reason. I wore an eye patch around 4-5 hours a day from the time I was 4 until 11. It took so many years of therapy because I was resistant (the nicest way of saying I threw kicking and screaming tantrums until I was 11 and beyond), and I’d take it off when I got to school because I was embarrassed of it. Ideally, we can start patching E before he really cares what people think to get some good work in before the challenging years begin. We’ll cross that bridge after we’ve beaten this whole cancer thing, though.

 

Tired after a looong trip!

We’re about to leave Memphis, and have some heavy decisions ahead. Do we follow protocol and go the St. Jude route, which would affect Easton’s whole system, dramatically change our lives at home, and add years of traveling for treatment, or do we attack more aggressively with IAC in Philadelphia with fewer treatments, yet not fully know the side effects in the years to come? We want to save Easton’s life first and foremost, but after that we hope to save his eye and his vision. It’s a huge decision that we will have to make within the next 72 hours so that we can book flights for next week.

Easton took his first plane ride this weekend! We had to check a car seat, the pack and play, the stroller, two large suitcases, one of which held a high char, inflatable bath, and toys. We’ll learn little tricks and short cuts along the way, but this time it felt like we took our entire home with us to PA. Fortunately my mom, dad, and sister were able to join us, so we had tons of help.

So when I say we’ve felt the Lord’s provision through this whole situation so far, I mean it. The day before we left, my aunt Kim called and said a friend had contacted her whose daughter lived in Philadelphia and was away at camp this summer. She said we were welcome to stay in her apartment while Easton was there for treatment. We looked up the location and it was .3 miles from the eye hospital. The incredible woman who offered the apartment, just so happened to be in DFW this weekend and was able to meet me to hand off the keys. We were able to cancel our hotel and stay in this incredible space within walking distance of absolutely everything we needed. This generous offer saved us so much time, hassle, and money, and was just perfect for our family. Her daughter and roommate opened up their home to people they’ve never met – what an incredible act of service! We are forever grateful for them.

We came to Philadelphia a little early to get settled and try to enjoy the weekend before a long week of tests and consultations. We toured Independence Hall, saw the Liberty Bell, had lunch at Reading Market, and walked around exploring the city on Sunday. It was also Father’s Day, so we got to celebrate Scott and my dad as well. Scott has been the most incredible father to Easton. It’s been fun to watch his tenderness toward E. He had to step in more than most fathers do from the beginning – I did not recover from my C-section quickly, and then my disc issues in my back started just two weeks after Easton was born. There were times when I couldn’t move, and Scott would get up in the early hours of the morning to take care of the baby with a long day of work ahead of him. His sacrifice for us has been constant and without complaint. Easton is a Daddy’s boy for sure – he lights up anytime Scott enters the room and reaches for him from my arms (I’m just a little bit jealous of this). Their relationship is a treasure to me, and I cannot wait to watch that little boy look up to his daddy for years to come.

This morning (Monday), we went to Wills Eye Hospital to meet with

Dr. Shields. She is world-renowned for her success in ocular oncology, and we are very confident in her ability to treat Easton.

We began by all three getting eye drops to dilate our eyes – it’s protocol there to examine the parents as well. That was quick and only consisted of having us look in all directions while they looked at us through a hand tool. After a few other quick tests and a consultation with Dr. Say, we moved to the room where Dr. Shields would examine Easton. There were twelve people in this little exam room observing and assisting her. It was a little intimidating, but she was very kind and had a calming presence that put us at ease a little. Instead of putting Easton under anesthesia, they did an exam and ultrasound while he was awake. This was agonizing for us. There were five people holding him down while he screamed and cried for around 10-15 minutes. By the end, he was so exhausted that his screams were hoarse and he could barely muster the energy to cry. I was in tears the whole time. The second they gave him back to me, he was out. He was completely soaked in sweat. His eyes were bloodshot a thick, bright red from the tool they use to hold it open while she examined him.

We spent so much time preparing for our consultation with Dr. Shields using the information that our oncologist gave us about intra-arterial chemo plus many other case studies we had looked up on our own. Ultimately, we wanted her to explain why she felt Easton was a good candidate for this intra-arterial procedure despite its risks, and why we should do it instead of IV chemo. It felt a little strange questioning the guru of this procedure, especially with her twelve observers in the room (I envisioned them holding in their laugher as they thought, “Do you KNOW who you’re talking to here?”), but our oncologist had brought up enough concern that we just had to hear her justify this method of treatment. We really like what she had to say and feel much better about the risks involved. We are tentatively scheduled for June 29^th if we decide to move forward with treatment, but it will all depend on how our visit to St. Jude in Memphis goes.

I’m so grateful that my parents and sister came with us on this trip. They spent so much time arranging our travel, researching the best flights and hotels, and coordinating our transportation. My mom and sister both work for American Airlines, so they are all seasoned travelers and handled everything we needed for the sudden change of plans. We were even able to fly stand-by to Memphis using their passes to avoid the change fee of our Philadelphia tickets. Our WHOLE family on both sides, both immediate and extended, has been such a strong support system for us through all of this.

We are relaxing tonight after a very long day, and are Memphis bound in the morning!

We leave tomorrow for Philly, but we received a phone call today that has thrown our plans off a bit. Our oncologist at Cooks called around noon today and said that she had reached out to St. Jude Children’s Research Hospital in Memphis and wanted to pass along some information. She said that she and the doctors there have some concerns about intra-arterial chemotherapy (IAC), the treatment we planned to get in just a few days, and that they would take his case there. They said that IAC is not protocol for his group of tumor yet, and they’ve seen some cases where there have been complications that could have been avoided by using systemic chemotherapy.

I started crying on the phone with her. I told her we were leaving the very next day, and that our retina specialist had told us this was the way to go. We assumed that meant our whole team was on board with Philly, but apparently that wasn’t the case. She encouraged us to still go meet with the Philadelphia doctor because she IS the guru of the IAC treatment, but that she wanted me to have all of the facts and felt confident that systemic chemo would work well. I added Scott to the call so we could both listen, take notes, and ask questions. The conversation ended with her saying she would connect us with the doctors at St. Jude to see if we could make it up there next week to see them before we committed to treatment in Philadelphia.

The St. Jude retinoblastoma specialist called us that day and spoke with Scott for 45 minutes about her concerns with IAC and her confidence in systemic chemo. She was very informative and took her time answering our questions. We were convinced by the end of the call that we would definitely not move forward with treatment in Philadelphia this trip. She told us we could call Monday after our meeting with the Philly doctors and discuss making the trip to Memphis for a consultation and exam under anesthesia.

It’s been a LONG and emotional day, but we’re ready to get the process going tomorrow.

Easton had his MRI under anesthesia on Friday and his exam under anesthesia today. The experience was difficult, but we received great news after both: the cancer has NOT spread beyond his eye, and it is only the one tumor in his left eye.

Our oncologist and retina specialist at Cook’s have given us a couple options. It’s been incredibly overwhelming and our heads are still spinning with information. Here are our choices as of right now:

• Intravenous chemotherapy for 6-8 months combined with laser therapy directly to the tumor under anesthesia. This is traditional, systemic chemo and would most likely be done at Cook’s in Fort Worth.
• Intra-arterial chemotherapy for 3-4 months – this is a newer procedure that targets chemotherapy directly to the eye by wiring a catheter to the artery that carries blood to the retina. With this treatment, we could potentially avoid some side effects of traditional chemo such as lowered immune system and hair loss. This is only done in a few places in the US and would be done in Philadelphia or Houston.

Easton’s first experience under anesthesia went well. We checked in around 6:30am. Our Rooted facilitator and pastor at Compass, Kayla, met us at the hospital and prayed over Easton (she’s pretty incredible, right?). We were in the prep area for about an hour or so, then we were able to go with him and watch him go under. He fell asleep quickly so it wasn’t that bad, but I still cried and remained a nervous wreck throughout the MRI. Both grandmothers came to support, and we got a surprise visit from Uncle Brevig! He drove all the way from Austin to be there for the MRI and spend the weekend with E. A couple hours later, we met him in recovery and were able to snuggle and give him a bottle. He was fussy and disoriented, but after about 45 minutes he was back to normal. No nausea, no side effects at all really. Later that day, the oncologist called and told us that his scans looked great and the cancer had NOT spread beyond his eye! Praise the Lord.

The exam under anesthesia today was a little more difficult. We had to start with eye drops, and these are really rough. They aren’t painful, but Easton just hates them. The nurses say they don’t like giving them either, because babies just scream and squint and are miserable. So, from that moment, the tone was set and E did NOT want to be in that room with those people. This time was different in that we were not able to watch him go to sleep. Because he was pretty fussy and it was clear that he would have some separation anxiety when they took him away to be put under, they gave him some nose spray that irritated him at first, but then had him completely relaxed within a few minutes. It was actually hilarious – he was laughing harder than I had ever heard at absolutely nothing. Just feeling REALLY good. I was in tears from laughing so hard at him. It was a quick exam. The retina specialist took pictures of the tumor and “graded” it on a scale of A-E, E being the most advanced.

Here’s a video of the effects of the nose spray. This was just the tail end of it, and some of the silent heaving is hard to catch – he was laughing SO hard for 5 minutes straight. Even though it’s sad that he had to be drugged out of his mind, it was a nice change of mood and the comic relief we needed after the exhausting morning we’d had.

While Easton moved to recovery, the doctor visited with us right away and told us that his was a group B tumor and that he felt he was a great candidate for the intra-arterial chemotherapy in Philadelphia. Because the tumor is only in his eye and appears to be unilateral (only one), he felt that systemic IV chemo could be avoided by targeting the medicine directly to the tumor. Scott and I like the idea of foregoing traditional chemo and all of its potential side effects, so we’re willing to explore this option. We heard from the doctor around 9:30 this evening that he had heard back from Dr. Shields at Wills Eye Hospital in Philadelphia, and she agrees that he is a great candidate for IAC. We’ll call in the morning to schedule an appointment, which we anticipate will be sometime next week. Off to Philadelphia we go!