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 