Well this trip was unexpectedly eventful!
We flew out to Long Beach for treatment visit #5 on June 18, 2022. It was a Saturday and we arrived close to midnight which made for a long day, but we knew we had Sunday to recoup and rest. We flew into LAX and stayed at The Cove.
Sunday happened to be Father’s Day and we spent a glorious day at Huntington Beach followed by dinner at the amazing Noble Bird Rotisserie.
Visit 5:
Monday was Jacob’s first of 2 appointments. He successfully challenged duck egg yolk and coconut. Both moved to morning maintenance. After everything was smooth sailing we headed to Downtown Disney for lunch and some shopping!
I’ll note here that Syed woke up on Monday feeling some body soreness, but didn’t think much of it. He figured it was a result of being slammed by waves at the beach the day before. After Disney we headed to the hotel and spent some time at the pool.
Here’s where things took a turn. By the evening Syed was progressively feeling more achy and tired. I could tell he was getting sick even though he was trying to pretend he was ok. I took his temperature and he had a fever. We travel with Covid tests so he tested and lo and behold he was positive. At this point I am internally freaking out (trying to stay zen on the outside). Jacob tested negative.
I sent an urgent email to TIPHelp since it was late and hoped that someone would reply by the time we woke up the next morning. In the morning I still hadn’t heard back from TIPHelp. Jacob and I tested again and at this point he was positive and I was negative, both asymptomatic.
We had the first appointment of the day so I wasn’t sure what to do. I didn’t want the clinic to think we were a no show and I also didn’t want to be left without a plan in place. I didn’t think to call the emergency line because that’s for reactions. Somehow I was also wishing that because Jacob was asymptomatic they’d let him do his introductions, considering he did his challenges the day before with no issues. In hindsight I realize this was unrealistic but again, wishful thinking and I was FREAKING OUT, in a completely unexpected dilemma, and not thinking clearly.
So I drove over to the clinic with Jacob, masked of course, sure not to touch anything, and immediately let them know what was happening. They had us wait in the car and one of the PAs came to bring us new paperwork and gummies to take home with instructions to hold the highest pistachio dose Jacob had reached and to come back in 3 weeks. Had the appointment gone as planned, he would have introduced hen egg yolk and escalated pistachio.
Back at the hotel I switched our flights to an earlier one, we were originally scheduled to arrive back in Chicago at 1:30 am the next day and that was no longer going to work for us. We quickly packed up and got to the airport. I prayed the whole way that the trip would be smooth and that Syed would be able to handle it well.
I felt awful flying under these circumstances but there was no way we could have quarantined in CA and we needed to get Jacob home in the event that he developed symptoms too. We needed to be in the comfort of our home. So we took every possible precaution. To say I was anxious about this all was an understatement. I was sick to my stomach over the whole thing. Once we were safely home I finally allowed myself a good cry over what had transpired in the past 24 hours.
Visit 5B:
Now the next thing to freak out about was planning to return in 3 weeks. These trips take a lot of coordination and are expensive! We were looking at paying $1,600 for just myself and Jacob to return so soon. There was no way we could swing this!
So I started researching companies that help pay for medical travel. We do not qualify for Miracle Flights. I applied for help through Medical Mercy Angels and in just 2 business days we were approved. They don’t pay for the flight completely but they subsidize it based on income. We were approved to pay just $450 round trip which was a small miracle in our eyes. We couldn’t have done it without them!
So on July 10, Jacob and I flew back out for a quick overnight trip to complete his appointments. He escalated pistachio successfully. An escalation basically means that he challenged a larger amount than what was dosed at home, but instead of it moving into morning maintenance, it stays in treatment and we continue to updose at home. It will take 3 treatment cycles to clear pistachio.
He also introduced hen egg yolk which is HUGE for us! The nuts are a big deal too of course. All of it is, but egg feels like an especially big milestone as egg is really the one food that I feel clearing it will open up the most doors. Egg is in everything and in my opinion harder to avoid than peanuts and tree nuts!
All went well and we headed home that evening.
One thing to note, this time when we checked in, there was a whole new online process and I noticed that it now says, *Please don’t come to the clinic if you’ve tested positive for Covid.* That’s probably my fault. Oops. Sorry! I truly pray that we did not pass it on to anyone else in the course of our illness! Ugh.
Whew! That was stressful. We return for visit 6 on Sept. 21 to challenge hen egg yolk and pistachio, and introduce hazelnut, quail egg white, and sunflower.