Friday, September 30, 2016
(side note: I have an app from which I can post to the blog, which automatically posts to Facebook as well. I'm having trouble with the app since updating my phone's OS, so...if I don't update much, you'll know why. I'm hoping to have it all worked out soon.)
My amazing Irish friend, Janet, took such good care of Elijah and I on our last night in the city before heading home. She got us a STEAK (and we are talking GOOD quality meat here!). I was excited for Elijah to try it for the first time. Unfortunately, he was in a mood, so he just wanted to scream at me and wanted nothing to do with the delicious steak. Finally, I decided to try putting Elijah in the bath. He has happy and playing, and I didn't want the food to go to waste so I brought it in the bathroom to eat. WELL! Elijah decided he would enjoy his food much more while he bathed.
I think he ate half of that steak!
Saying good-bye to the East River.
We found a cool little play area at the airport just across from our gate. I know many were praying for us and our trip home. I really don't have words to describe our return, other than to say that we made it, that part of this journey is behind us, and I am really thankful to be back home.
We made it home just in time for Caleb's check up at the endodontist....which revealed that he will need another root canal. The tooth next to the one they have been working on had also partially come out in the whole trampoline incident. The doctor has been watching this tooth and has seen changes that indicate he will need a root canal on that tooth as well. While we were pretty bummed at this news, we are so thankful for a very diligent and thorough endodontist, who has become like family to us, and glad he was watching this tooth and knew when it needed treatment.
Tuesday, September 27, 2016
"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."
Elijah and I made it into the city and to the hotel. I was so exhausted I didn't know if I could actually get up and walk. I considered having food delivered but the hour wait time detoured me. We headed out to Whole Foods, which was such a mad house that we left. I had noticed a pita place so I headed over there. The price was more than I was hoping to pay, and after I ordered, I noticed that the only seating was upstairs (Elijah was in the stroller). I decided we would have to take it back to the hotel, but I was starting to feel faint from exhaustion and hunger.
Just about a block away from the hotel, I quickened my pace to make the crosswalk light....when the paper bag holding our food gave way and out tumbled our food onto the sidewalk. I salvaged what I could, and we made our way back to the hotel room. By this point, Elijah was almost inconsolable for about 45 minutes so we decided to get loaded back up and head out for a walk.
Our friend Joey, who may have been in a work meeting with two of his associates.....invited us to come and crash their dinner meeting at one of our favorite cafes. I was worried about Elijah not having eaten, but Joey ordered his favorite frozen yogurt and fresh berries, which he happily devoured. He also, against my wishes, ordered a chocolate cake....which was like food for my soul. :)
Joey's associate and friend, Theresa was missing her boy (whose birthday it was), and so she gladly held Elijah and entertained him in his curiosity as a chemist mixing sugar and water. Joey and Taymour also enjoyed feeding Elijah, playing games with straws...
At the end of a long and wearisome day, I cannot say what a grace it was to have friends come around me and help with Elijah, and engage in pleasant conversation....not to mention the yummy food. :-)
We had a fantastic evening and Elijah slept wonderfully from 10:45pm when I put him to bed, until 2:15am when I woke him for his last feeding, and again until 5:45am when I woke him to get to the hospital.
It was a good reminder that many times the difference between a day ending badly and a day ending well is whether or not you keep going. (Although let's be real-there are those days that just need to be over.....think: early bedtime!)
Anyhow. We got to the hospital by 6:30am, and because we were trying something different with his anesthesia, he had to be poked twice for his IV (mostly because he was thrashing about.)
I took him back and laid him on the table and took a few deep breaths. I got Ben on the phone and then waited for the doctor.
The tumor near Elijah's central field of vision is growing again. The doctor carefully explained our two options: laser, or more IAC (intra-arterial chemotherapy.). He said that it is highly unlikely that they will be able to kill this tumor with laser without taking out his vision. So, the doctor felt that the best course of action at this time was to laser the tumor today, and loosely plan on chemo next month. (The doctor did go so far as to mention that he checked to make sure the chemo doctor is available in four weeks). We will be back in four weeks, and our appointment lands on October 26th, which is my son Noah's 10th birthday.
When I saw the date, immediately so many things came to my mind. God's Word says that all things He is working for my good. Even this? Even disease, and chemo, and missing important birthdays?
I can't always see it, and I don't always understand it.
But I thought of how the campground had been closed for Noah's birthday, so Ben took him on his 10 year old camp out early.
I thought about how Ben was home with the kids when we got this news, so as we told them with me on speakerphone, they had the comfort of having a parent with them.
I thought of so many ways that God has been in ALL things.
And so, while this wasn't the news we had hoped for....we will just have to expand our "All Things" file. I have always had compassion for families walking through childhood cancer, but never anything compared to what I have now. Now I breathe it with them and feel the ache in my chest with them.
And not just cancer, but so many other difficulties that children face.
These last 19 months, I have discovered strength that I KNOW does not come from me. But I would not have found it if I didn't need it desperately.
There is joy that would never have been mine, as I nurse Elijah in the quiet moments. I delight so much in each moment I have with him, and in many more moments with all of my children, because I can't take it so easily for granted that tomorrow will come.
There are countless ways in which these last 19 months have been for my good, Elijah's good, and our family's good. And all the ways that I can't see the good....well, for now I'll tuck those away into the "All Things" file and ask for the faith to believe when I don't see.
He is with us.
He is for us.
In all things.
Thank you for praying with us and for us.
Monday, September 26, 2016
It's 3am and we are on our way to the airport. :). A friend of mine was posting about getting ready for their trip to NY this week as well, and I could relate so strongly to each mixed-up bottle of emotions.
We sort of have a routine going. I even wear the same outfit for traveling (with minor changes for season, etc.). Due to construction at the RMH, we won't be staying at the house this time. Our hotel is only 10 blocks away from RMH, but in Manhattan, it's a whole new neighborhood. I'll have to find a new health food store and a pharmacy to buy diapers and wander the isles.
We are doing a quick turn-around this time-I'll fly back Wednesday night and Ben starts his new shift at work early Thursday morning. New things all around.
Sometimes, it feels a little quiet with all the newness and change. I long to hear God speak to me and make sense of some things. But the other night, I heard something really profound in a movie. The character said, "You know better than any that the teacher is always quiet during a test."
This rung true in my heart. How many times have one of my kids asked me a question during a test, to which I respond: "I can't tell you during the test. I'm trying to see what you know. When you're finished, we will go over it together."
And so, even when it's quiet, and even when the changes are difficult, confusing, or hard.....I take such comfort in knowing that the Teacher is there! Perhaps quiet, but always comforting and providing and just being near.
It was so neat though, the airline allowed Ben to accompany me to the gate, so it was nice to have my friend around until we boarded.
I think Elijah enjoyed it too:
Wednesday, September 21, 2016
Judah Sean Hester has finished the Sing, Spell, Read and Write program! Hooray! We are so proud of you Judah and we can't wait to see what adventures await you. There's a whole world just waiting for you to read. :-)
When one of our kids finishes Sing, Spell, they get a special frozen yogurt date with mom and dad. Judah was so motivated, he finished a few days work today so that he could have his special date!
Thursday, September 15, 2016
Elijah bear had his first speech therapy appointment, which will soon be followed by his first occupational therapy appointment next week. He felt like such a big boy that when he got up from his nap he wanted to color like the big kids.
Thursday, September 08, 2016
Due to traveling so frequently back and forth to NY, it became overwhelming to think about actually unpacking and packing again every time. I decided that it was in my best interest to leave my suitcase half packed. I remove the clothes in order to wash them and all, but I just have a second toothbrush, travel shampoo, etc. that stays packed in the suitcase. It's one less step when we are preparing for a trip to NY.
I'm the same way with hotels. Or when we stay at the RMH. I never unpack all the way. In fact, I leave as much packed as possible and live out of my suitcase. I would say it's because I don't want to do the work of unpacking everything, but I end up doing that anyway as I repack the suitcase when we leave.
But it got me to thinking. Unpacking is the feeling of settling in, a sign of being home with no immediate plans for travel, a sign of setting your roots down.
Yesterday, we took Elijah down to CHLA for his MRI. We know that, while developing tumors in the brain is rare, Elijah has already fallen into the "rare" category a few times-both with his cancer, the young age of his diagnosis, and other things of that nature. We also know that the average age for developing these tumors in the brain is two years after the initial diagnosis....and we aren't there yet. But childhood cancer is really the feeling of remaining half packed. It's keeping an extra toothbrush ready to go because you just never know when and if this beast is coming back.
As we sat in the waiting room, I told Ben, "It's taking too long." What is usually an hour long had turned into two hours and I was getting anxious. It was reminiscent of the day they found tumors in his remaining eye. I remember sitting in the waiting room, with a screen that told me how long Elijah had been back in "surgery." I kept watching as the number of minutes crept higher and higher. I remember the progression that day in my thoughts from "that seems to be taking a little longer....", to "its been longer than normal...", and finally to the pit settling in my stomach as I knew it was way too long.
I felt the same way yesterday as the minutes crept by to a time well past normal. I was a little distracted by the shooting spasms of pain in my back that had given way as they had me bring a screaming and thrashing Elijah into the MRI room.
I am so thankful Ben was with me yesterday. When I finally received the report, I braced myself for whatever news may come, and breathed a sigh of relief as I read through the report and realized that there was no signs of cancer outside of his eye. There are, of course, signs of disease in the eye, but we can't tell from the MRI if they are active tumors or not.
So, while this is GREAT news!!!!!! You can't help but feel a little bit like you are still half packed. There's just too much still going on for us to unpack it all. We leave the toothbrush in the suitcase because we head back to NY in three weeks.
No matter what is ahead in the future, I was meant to remain as a traveler-a sojourner-in this world. There are joys to be known and memories to be made, but they will all give way to greater joy when we finally find ourselves home. It's the forever tension of living in one world while awaiting my place at home in another.
My suitcase is still half packed. But you know! A sojourner doesn't always know the destinations. Leaving the suitcase half-packed is also a sign of hope: maybe one day, we will not be traveling to a hospital but to a vacation!!!! For right now however, this is our journey.
Even in the scary moments where the scans or the surgeries/exams take too long....there are memories to be made and gifts to recognize and be thankful for. It was by sheer accident on our part that Ben was able to be with me....although I know it was planned perfectly in the heart of God.
So today, we are thankful for the good news we did receive, but we aren't unpacking the suitcase. Not until our sojourning is over and we reach our home.
"For this world is not our permanent home; we are looking forward to a home yet to come." Hebrews 13:14
Saturday, September 03, 2016
For those of you who were unable to attend the Hope Rising conference, or for those of you who just need some encouragement in Hope, here are the links to the videos of the main sessions.
May God continue to unite us around Jesus Christ, who by His blood has secured our hope.
Session ONE--Hope Uprooted: https://www.youtube.com/watch?v=b8Y0K_3pXHo