I know it’s been a while since I last posted an update, so I will try to get you up to speed.
I will start with 2 days ago (Tuesday). Ava and I ran some errands in the afternoon while the boys stayed at home. We ended up at Target to pick up a few things. Ava was sitting in the cart and was messing with her g-tube (Feeding tube in her belly. It was not an uncommon thing for her to be playing with it) as we were waiting in the check-out line. I looked away for a second and when I turned back to her, Ava’s tube had fallen out! This has never happened in the year and a half that she has had it in, so we were both a little traumatized by the event. I rushed us out of line and found a kleenax in my pocket to put over the hole and stop her stomach contents from continuing to come out onto her clothes (it was quite stinky by the way). Meanwhile, Ava was quietly sobbing and begging me to put her “tubee” back in and to “fix it” and to take her to the doctor. So, I got her somewhat calm and proceeded to check out and get to the car. I did call her “tubee doctor”, who was on vacation of course, and I was told to put a new one in. I had been taught how to do this in case something like this happened, but that was a long time ago and I had never had to do it before. I quickly got home and set up to put the new tube in (there is only a small window of opportunity before the hole starts closing), but the darn thing wouldn’t go in. Ava is now crying again (although she is being such a trooper and holding still) and Josiah is trying to calm her down while I am on the phone asking how hard I should push the tube. In the end, we just left it out and we are letting it heal. It’s actually a mixed blessing, because I had been meaning to get her an appointment with her GI doctor to take the tube out since we have not used it since she was sick in March. I just had not totally decided that it was the right time yet. Oh well, I guess it’s one decision that was made for me. The fun just never ends around here 🙂
Let’s see, what else have we been up to: We’ve been up to Mayo twice for a second opinion for Josiah. We’ve been to the zoo, the splash park, we went to a parade, and saw some fireworks, we have read lots of books, and played lots of hide-and-seek, and danced in the living room, and spent tons of time with family and friends and in the outdoors.
The Kids:
Ava (3 yrs) just keeps us laughing!
Her little voice and the things she comes up with to say just crack us up! Of course that little, constant voice can drive us crazy too, but I’m so thankful for it. It wasn’t that long ago that she wasn’t talking at all and we just had to wonder what was going on in that head of hers…now, there’s no question 🙂 We are so very blessed by how far she has come and how well she is doing. She is into knowing everyone’s name and yes, that means she likes to try out our names and her grandparents names occasionally. We are trying to nip that in the bud. She has picked up on the nick-name that I often call Josiah (“hunny”), and we had a conversation the other night while laying in her bed that went something like this:
Me: Daddy is such a good Daddy isn’t he?
Ava: Yes. And he’s a good hunny.
Me: (chuckle) Yes, he is a very good hunny!
Ava: You call Dad “hunny” and I call him Dad.
Me: thinking: finally, we are making progress!
She loves to walk into a room of strangers (waiting rooms, elevators or as she says “alligators”, stores, the park, church,etc…) and ask everyone “what’s your name?” and “how’s your day?” and “what’s that guy?” (“guy” can refer to girls too BTW). She is such a first born and feels the need to keep track of everyone and their pets. She is a big animal lover and can be a little too loving with them. She loves her baby brother and calls him “buddy-boy” and tells him “you such a good boy”. He of course loves to grab her hair and glasses to which she responds “be nice Lincoln” and “Mom, help. Lincoln got me.”.
Lincoln is now 7 months old and is growing up too fast.
He started cereal and baby food a couple weeks ago and LOVES it! It’s so nice to have a baby who actually likes food. Lincoln has very sensitive/dry skin and had a reaction to one formula already so I was a little concerned with starting food. But we’ve been taking it slow and he’s been doing great! He gets around pretty quickly by rolling, scooting and lunging. It’s such a new and fun thing to have a baby be so determined to move, even though I may eat those words in the coming months 🙂 He is very close to being able to crawl and gets up on his hands and knees and rocks back and forth trying to put all the pieces together to go forward. He also likes to get up on his hands and toes. He is such a happy boy most of the time and is really starting to be silly to get a reaction. It amazes me how quickly they figure that out. He likes to wiggle around on his back like a fish because he knows it looks funny. I’ve seen him just laying on the floor by himself giggling for no apparent reason. Of course Ava is his greatest source of entertainment. He adores her! We just love our little boy and having such a healthy baby has been so healing for my heart…we are just trying to enjoy every moment that we have with him.
OK, on to Josiah. Well, since I haven’t given a lot of details lately I’m assuming that most of you have guessed that we’ve been making some hard decisions. Yes, his main tumor did shrink a little with chemo, but the other tumors in his pelvis and in his lungs at the least stayed the same size and there is debate that some of them actually grew. The only way to cure this type of cancer (sarcoma) is to surgically remove it. At this point, the only way to surgically remove the tumor in Josiah’s leg/pelvis is to do what’s called a hemi-pelvectimy (removing his right leg and part of his pelvis). That’s a pretty drastic surgery. But even if they did that, we still have the problem with the spots in the lung and there are more spots than we originally thought. At least most of these spots could be surgically removed as well (it would take at least two major surgeries for that), but it is very likely that more spots would appear. So….where does that leave us. We are in some ways changing our focus. Instead of focusing on curing his cancer, we are looking for ways to control it. This will include chemo and probably some radiation down the road. We drove to Iowa City today and Josiah will be getting chemo for the next couple days. It is the same regimen that he got the last cycle, just toned down quite a bit. The doctors can not be sure of his prognosis…they admit that very little is known about sarcoma’s. We did press them to give us a big picture and they said, unless we find something that really works to kill the cancer, he probably has 1-2 years. OK, I know that was heavy…believe me, I know. But with all that being said, our God is SO ABLE to heal this cancer if He is willing to. That would be NOTHING to Him! God has Josiah’s days in HIS hands and they were numbered from before his birth (Psalm 139). Josiah will live out all those days. No more, no less. Which is the same for all of us, by the way. We have not “given up” and will continue to seek treatment where God leads. Josiah is feeling really good right now which we are SO thankful for. We have had some difficult conversations at our house lately, but God’s grace is sufficient.
I am doing well. I find that some days are harder than others. There are days that I am so filled with peace and joy and others that I feel very heavy inside. I cry and then I move on. I refuse to waste time mourning for someone that I still have. We covet and appreciate your prayers and encouragement, but we do not want your pity. God has blessed us more than we deserve and we have our eternal security in heaven. Is this the path we would have chosen? Of course not. But we want God to get the glory no matter what and I believe with all my heart that He has a purpose and a plan for everything in our lives. I may not know what that is right now…but I’m not worrying about that. It won’t matter in eternity.
You all have been such a huge encouragement to us! Your generosity humbles us so much. We are soooo very thankful for everything (including the anonymous gifts!). May God bless you all.
Rejoicing day by day.
Beautiful Things 
You are an amazing testimony of the Lord’s goodness in the midst of trial. Thank you for posting and keeping us up to date. We are praying for healing, and for strength of faith on this roller coaster called ‘cancer’.
Hey! Me again. I was just wondering if you have given any thought to adding natural supplements to Josiah’s diet to fight the effects of the chemo. Chemo kills good and bad cells, and he needs all the good cells he can get to fight this thing. I also was wondering if you knew that Broccoli, garlic, onion (?), Kale, cauliflower, among a host of fruits (blueberries, raspberries, pomegranate) specifically target cancer cells? There are a few other vegetables that help to fight cancer, too, but I forget what they are.
It is good to read your family update. May God be with you always, and make His presence very real to you. Let me know if there is anything we can do.
Thank you for your update. This is hard news to hear, but we will certainly take your approach in encouraging you and praying for you all. You are such a strong family and God is holding you all. Please let me know if I can do anything for you…I’d love to bring another meal, watch the kids, ANYTHING!
Thanks so much for the update! You guys are AMAZING!We love you and hope to plan another visit soon! Hugs~
Our hearts and prayers are with your beautiful family. We’re really good at praying. There is also evidence that wheat grass is an effective fighter of cancer. If you are interested in this alternative, I have a friend who owns a natural food store that sells wheat grass shots in bulk and I would be happy to deliver. Tell Josiah all of his best friends at work miss him, and we are working on an event for all of our families to get together.
Your testimony brings to mind a song:
“Like peering through a window blurred with rain;
Emotions run together in a flood of doubt and pain.
We’ve prayed as best we can.
Now we must leave it in his hands.
Yet I know when my eyes fail to see,
HE IS ABLE
And even though it seems impossible to me,
He is able.
But if He chooses not to move in the way we prayed he would
I’m confident He’s working all together for my good.
I will stand behind His Word
For He is able.”
Your words of praise are such an encouragement. You are never far from my thoughts. I was just telling the secretaries this summer about my “little freaks” and I prayed for you. God seems to bring little memories to mind that make me think of you. Love you much!
hey jess! i just flipped through your facebook pics and that little lincoln is soooo handsome! i don’t think you have 1 pic of him where he’s not smiling! i found myself studying his little features. and ava…funnnnyyy faces. i loved the forced smile. 🙂 praying for you!
Hey there Iowa Johnsons! Not sure why I said that, you’re all Iowa Johnsons to us! Moving along….it’s late and obviously I’m acting a little corny. I’ve been putting up pickles (not corn) so maybe I should say I’m a little pickly. I’ll write back in a few weeks when the corn is ready and say I’m corny then. Ha, ha, ha. Well, this post obviously did not have a point except to say – HEY THERE. I’m thinking about ya and praying for your joy. Contentment is just the key to everything, huh? You’re so right to not mourn for someone who’s right in front of you and is saved by grace. Thanks for the reminder that any one of us reading this could have less time than we think. Today I was humming that old song, “I Know Who Holds Tomorrow”…it came out of nowhere, believe me…..it’s not exactly on K-Love….but it’s message is so relevant. Random thought….we might get to actually go on a date -gasp!- and see Third Day in KC next Saturday. Which makes me think of countless songs that could encourage us both. Alas, I must retire for the evening. Now I sound British. Hardly! I heard about you calling the interns “mini – me’s”. That is hilarious. We’ll have to use that next time we’re at Children’s Mercy going on our 4th round of “mini-me’s” dropping their clipboards and confusing their questions. Anywhoo. Thanks for the laugh. Take care! Kiss those cutie petooties and eat some ice cream…….Charlie (Ava’s age) stuck his ice cream bowl on his face tonight and audibly sucked the last drop out. We took a pic and when he finally dropped the bowl we snapped another. What a riot. Make some memories and enjoy your summer! Love you!
I love you guys! Wanted to share a little of my readings this morning from my quiet time.
Thankful for Difficulties-
We gladly suffer, because we know that suffering helps us endure. And endurance builds character, which gives us hope that will never disappoint us. All of this happens because God has given us the Holy Spirit, who fills our hearts with his love. * Count it all joy when you call into variuos trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you might be perfect and complete, lacking nothing. * They that sow in tears, shall reap in joy. * Through Jesus, therefore, let us continually offer to God a sacrifice of praise — the friut of lips that confess His name. *
God is my trainer. He knows what trials, experiences, and blessings I need to get in shape spiritually. Some of its tough, but my trainer knows what he is doing!
Suffering is not punishment– it is a work of grace meant to produce eternal fruit. God is preparing us for eternity.
Hi Johnson Family!
I have been reading this blog since you started it and I thought it was time to leave a note. Been praying for you all. I thank God for the amazing testimony you have exhibited through these trials! Our God is bigger than any problem and I’m so thankful that those around you are seeing proof of God’s greatness through your reactions toward this cancer. Who knows what good things will come of this. Only God knows and time will tell. I’m starting to ramble now. Just wanted to let you know I am praying!
Dear Jess,
I was really waiting for updates in the blog. I am Aubrie´s friend, from Argentina. I was an intern with her in D.C. I remember when she told me that Lincoln had borned and now I cannot believe he is sooo big! I am praying for your beoutiful family and you! Your strenght and faith is amazing, I am sure God is going to answer the prayers! Please keep posting, it is the only way i have to keep updated…
Love,
Julita
I’m so thankful to the Lord for the grace He is pouring out on you. Knowing that God doesn’t give us more than we can bear, makes me believe you two are very strong in your faith and that God knows you can handle this too. Thanks so much for the update on your entire family and your honesty. Hearing from your heart is precious to me!
Jessica,
You don’t know me, but my name used to be Hird, and you may remember my brother Tim. I just wanted to let you know that I can honestly say, I understand what you are going through. My husband went into the hospital due to dehydration and bleeding on May 31st and we never left…he passed away on July 16th. His battle was similar to the rollercoaster (I recall using that term too) that you and Josiah are on right now. My husband battled a rare disease, in fact no doctors could really diagnose him for the past two years. I just wanted to let you know that from your entries you sound like you are doing a great job of “keeping the faith”. We had a great celebration service for Jared yesterday, using on of his favorite verses:
“FOR I KNOW THE PLANS THAT I HAVE FOR YOU,” DECLARES THE LORD, ‘PLANS FOR WELFARE AND NOT FOR CALAMITY TO GIVE YOU A FUTURE AND A HOPE.’
JEREMIAH 29:11
Thankfully our hope is in Christ, and He will sustain you throughout all the trials that He sends your way. I will be praying for you, and feel free to get in touch with me if you need someone to talk to.
Josiah and Jess,
Lisa and I continue to keep you in our prayers. God bless you and your family.
Brian