We had a great day today exploring Garden of the Gods at Colorado Springs! The kids were tired out by the end of the hike but loved it.
Jonathan's appetite improved this week and we found ourselves having less stalemates where we sit at the dinner table for an hour working on getting him to eat an ounce of cheese or tablespoon of peanut butter. I'm very stubborn so he gets that from me. On the flipside, stubborness translates to perseverance and our little warrior definitely has that. He's excited about his surgery appointment on Monday. Every day he's asked how many days to go before he gets his port out. His congestion has cleared up so he shouldn't have any problems during the procedure. Please pray against blood clots. He had a blood clot in his jugular early in his cancer treatment that the doctors said was probably from putting the port in. He had crazy inflammation from all the tumors and his oncologists thought that was why he had the clots. They made the decision to stop blood thinners after a couple weeks when the clot in his jugular and lung dissolved but they wanted to do follow up blood panels to make sure he doesn't have a clotting issue. Those tests haven't been done yet. Taking out the port is less invasive than putting it in, but we'd appreciate specific prayers against that issue. His next doctors appointment isn't until June 17 and they will do an ultrasound of his abdomen, echo of his heart, and more labs. We're so thankful Jonathan is doing so great! To God be the glory!
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Jonathan had a good check-up today! The oncologist we saw today treated him at his sickest point and she was very pleased to see him doing so well. They confirmed we don't need a new NG tube so we can happily send the feeding pump back to the rental company. Its good not to have his bedroom looking a bit like a hospital room with that still hanging around. His appetite isn't fully back to normal but with a little extra pressure from us at mealtimes, he's getting enough calories. Our little string bean has always been a picky eater with not the best appetite anyway. Clara can eat him under the table any day.
They ran a bunch of blood tests today to check his immune function and to see if they'd have to re-do any vaccines. The chemo can fight back the immune system so severely that sometimes you lose some of the antibodies you got from a prior vaccine. They will call me with the results. They expect his immune system to be a bit weak for awhile, but cleared us to basically go anywhere with him including crowded places but just to be cautious to wipe him down afterwards to minimize germ exposure (wash hands and face). The doctor called us later in the afternoon to share the good news that no further PET scans are needed and they want to get his port out! His scan before his last chemo cycle was so "clean" that they're confident the cancer is gone and don't need to re-scan. So hopefully in the next week or two we can get that port out! It seems to bother Jonathan a bit, he asks us not to touch it when he's taking a bath and he keeps asking when he gets to take it out. Praise God! With the port gone we can deal with a fever as if he's a "normal" kid and not have to take him to the hospital for blood cultures any time he goes above 101. I asked more questions today about long term side effects from the all the chemo. I was relieved to hear that chance of him being infertile was only around 10% since he was treated so early in relation to puberty. Early in the treatment the docs made it sound like it was a much higher likelihood. They will watch his heart carefully but scans so far haven't shown damage. They warned us today about cognitive delays in school. Pre-cancer we'd already decided to keep Jonathan out of kindergarten in the fall so we'll just make sure to work with his preschool teachers and keep our eye on it and give him extra help if he needs it. We're so very grateful to see our little boy returning to normal. Like everyone, you don't fully treasure what you have until you lose it. We thank God that He sustained us during this hard time and we trust Him that He has a bright future for our little warrior. Jonathan had a very fun week. I tried to do something out of the house every day for him to finally make some good memories of our new home in Colorado. Monday we went to an indoor playground. Tuesday we went to the library. Wednesday we checked out Denver zoo. Yesterday we went swimming at the local rec center and today we're going to hit Chickfila for some yummy food and indoor play time. =) Eating is still a bit hit or miss, but thankfully he's regained his love for milk. So while he might only eat a few bites of a cereal bar for breakfast, he follows that up with 8 ounces of whole milk so his weight has stayed pretty constant. He's lost maybe a pound since we started weaning him off the tube feeds. He got tired at the zoo and asked to come home after a couple hours but he walked most of that two hours. We're so very proud of him. We also took a bike ride this week and he loved it. He's still using training wheels but is getting more confident on the bike. So amazing to see him just being a normal kid.
He has his first "healthy" doctors check-up next Friday. We assume his immune system is pretty much back to normal. He hasn't picked up so much as a sniffle being back in church and around other kids. It'll be good to check back in with the docs and make sure his recovery is what they expect. Thank you again for all your prayers for our family. Looking back at January-April, it seems somehow a hazy, bad dream. As at other times in my life, I look back and wonder how in the world I made it through that trial and know it was the result of prayers and God being strong in my weakness. We're also feeling incredibly blessed by our new neighborhood. We are surrounded by young families. As we've started meeting more of our neighbors, we realize that there are probably 5-6 kids that will be in kindergarten with Jonathan in 2017-2018. Also plenty of younger siblings close to Clara's age. We stood outside and chatted with 3-4 neighbors while all the kids ran up and down the sidewalk playing with each other. We didn't have that in Texas and are looking forward to deepening those relationships and having more friends. We're also going to try a church small group in the area next week. It feels like our whole family is coming back to life. We were just surviving and getting through the last few months and now we're thriving. To God be the glory! |
AuthorOur family has been through non-Hodgkin's lymphoma with our 4 year old and throughout it all we felt God's presence. My life verse is Romans 8:28. "God works all things together for good..." Archives
February 2017
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