Jonathan and Clara did so great on the flights! Thank goodness for modern technology. I can't imagine how my parents kept us still on airplanes at that age. Jonathan stayed perfectly healthy beyond some allergy symptoms. His cousin Calvin last saw him in February when my little sister came to take care of Clara for an entire month. Jonathan was bald, relying on a feeding tube and super lethargic when he last "played" with Calvin. Those two boys tore around the house and the backyard, giggling and playing. It was amazing to see.
We visited a petting zoo that had Clara declaring she wanted a kitty (and a chicken and a horsey). We went swimming and to a splash pad, and to a great zoo. A friend at church throws a "cousin camp" every year where she hosts all the cousins with fun games and activities. We think the Swann cousins might try to follow suit. With them living so far apart, we'd love for them to know each other as they grow older. My older sister and mom came as well. For those of you familiar with my mom's history, please keep praying for her recovery and for my sister as she selflessly cares for her. We hoped she'd interact with the kids and take some joy from being around them but she stayed inside her shell and looked miserable the whole time. We continue to hope the amazing woman who raised us will emerge from the depression and anxiety and enjoy life again. Also, a friend tested positive for cancer this week and is still waiting on tests to find out prognosis and treatment. Please pray for her recovery and strength. To God be the glory!
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Jonathan continues to do great! Jonathan, Clara and I will be flying on Saturday to Milwaukee and returning on Wednesday night. My little sister Doris lives in the Milwaukee area and Jonathan and Clara are so looking forward to seeing their cousins Eve (age 6) and Calvin (age 4). My older sister Elizabeth is going to fly in from Florida as well and bring my mom with her (Friday through Tuesday). Please pray for smooth travels for her and Elizabeth. She suffers from mental illness and/or dementia (depending on which doctor you talk to) and flying was always stressful for her even before her decline. Pray she stays calm and that any extra medication Elizabeth might need to give her works quickly. Pray also for me flying with the kiddos. Jeff is saving his vacation time for our Legoland trip at the end of the month so I'll be flying alone with the kids. Pray also for Jonathan for protection from infection. His last blood tests showed pretty normal white cell counts, etc. but he's still at higher risk of catching something.
I took the kids to the zoo this morning. We rode the train, said hello to the elephants and then plopped down on a shaded lawn to eat a picnic lunch. As I watched Jonathan and Clara giggling and chasing each other in between bites of cheese, time just slowed down for me as I tried to soak in every detail of that perfect moment. We are blessed beyond measure. Jonathan could have had a very different outcome from his battle with cancer. Instead, I get to take two happy, healthy kids to enjoy the mild Colorado summer and watch them delight in each other's company. Praise God from whom all blessings flow!
Make a Wish has been contacting us to get all the details for our Legoland trip. I believe they're still waiting on official clearance from Jonathan's doctors but we're all so excited about getting away on a dream vacation where every single detail is taken care of for us. The will even send a car to take us to the airport and pick us up! They sent Jonathan supplies to make a countdown chain so he can tear a loop off the chain every day and see how many days are left until we go. Jonathan is a walking miracle and reminder of God's unmerited blessing and favor in our lives! I said many prayers this week and this morning on our way to the hospital. Jonathan is acting like he feels terrific but there's still that unsettling whisper in the back of your head that says, "what if...." Jonathan did well during the abdominal ultrasound. They popped in his favorite movie during the heart echo. I watched the ultrasound screen, transfixed. The last time I saw his heart on a screen in such detail was when he was still growing inside my body. He's had other heart echos but I've been too busy holding his hands and keeping him calm to watch what the tech is seeing. Today I marveled at what a wonderful thing God has designed in our bodies. Jonathan even commented on how "busy" his heart looked. They did opt to do a needle draw for his labwork once we got to the oncology clinic but that went fairly well. He cried a lot but it was quickly forgotten when the nurse gave him a new toy car to make up for the experience. We saw two of our favorite doctors (a fellow and an attending) and they both said how great they thought Jonathan looked.
They didn't have the scan results while we were there but called me this afternoon. Everything looks perfect! His liver was very unhappy at his first ultrasound from the massive tumors crowding it and pushing on it. They examined every site in his abdomen (liver, kidneys, bladder) that were full of tumors in January and found no trace of any disease or new cancer growth. Praise God! The heart echo showed a perfectly healthy heart. Some of the chemos he was on can damage the heart, but they continue to see no evidence of that. All of his blood counts were in the normal range, including his white counts! That's a first since we began this cancer journey. So, we will go back a month from now for another check, but so far so good! Thank you for your continued prayers for us! We rejoice in God's provision and healing. To God be the glory! So yesterday I watched Jonathan and Clara playing "oncology ward". Jonathan was telling Clara to lay very still and he'd get a butterfly to put in her port to give her medicine because of bad cells that were making her belly big. He also told her he'd get a milkshake setup with the pump for her tubey. While its a bit painful to remember why Jonathan knows all those terms and concepts, its likewise amazing that its something that he plays and pretends with now. Its not a painful, traumatic memory for him. Its something that he's just accepted as part of his life and moved on. We shipped his feeding pump back to the home healthcare company today and Jonathan proudly told the UPS worker all about his pump and how he was all better and didn't need it anymore.
Jonathan has his next big checkup next Friday, June 17. Please pray that all of that goes smoothly. He's getting a heart echo and an abdominal ultrasound. He hasn't liked the "jelly" they use during both procedures. No biggie but he needs to hold still for them. The heart echo is making sure the chemo hasn't damaged his heart. The abdominal ultrasound is just checking all the lymph nodes that were swollen with tumors. He no longer has his port and I have a feeling they'll need more blood from him than they get from a finger poke so we're probably getting our first needle blood draw so pray for that as well. He's getting stronger and eating better so we don't really have any concerns at all about how he's doing. Something Jonathan has really been looking forward to is Legoland. About half-way through his treatment we showed him some pictures of legoland and promised him that we'd take him when he was "all better". Everyone has heard of Make a Wish foundation, but what we didn't realize until recently is that Jonathan qualifies for a "wish". A child doesn't have to be terminally ill to get a wish, they just have to have gone through a life threatening illness. Jonathan will be interviewed by a wish coordinator this weekend to tell them all about his "wish". He's super excited. It'll probably be several weeks before we hear any details about the trip. So hopefully we'll be headed to San Diego later this summer for a trip that will create tons of great memories to make up for lots of painful ones. Thank you again for all your prayers and support! We're so thankful for Jonathan's recovery. To God be the glory! 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! 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! Authored by Jeff
Jonathan took a very bold step today and decided he wanted to take out the NG tube before bed tonight, so that mommy would be surprised when she got back from her ladies conference down in Colorado Springs this weekend. He was very brave, didn't "spit" and didn't cry afterwards (just like he told me). We didn't have the best meals today, but he told me he could feel the tube in his throat and it would sometimes make him cough when he swallowed food. Hopefully, now that the tube is gone, he can complete his recovery. The tube needed to come out anyway, as they can only stay in place for a month. We're praying now that he will be able keep his weight up so that we don't need to get another one. Praise God for this next step in our recovery! We got to stay home all week! No doctor's appointments planned or otherwise!
Jonathan's appetite fluctuated but most of the week we did no tube feedings during the day and his weight stayed the same! Last night we skipped the overnight feed for the first time (he usually gets 16 ounces, around 500 calories while he sleeps). He woke up shaky, hungry but ate more at breakfast. I left a message with his doctor to see if we could remove the ng tube. They don't want to see him until May 13 and the tube technically should be changed on May 1. I'd like to try no tube and just watch his weight and food intake carefully. We remain so thankful at his rapid recovery. He's tearing around like a normal kid and has a great layer of peach fuzz growing in. He's been talking more about some low points...being in ICU and not liking the elephant nose (cpap mask), but he seems unfazed by it all. God has been so faithful to protect his little spirit. God is good! 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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