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!
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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! So, for the first time in 4 months we all got to go to church! Like a nervous mom dropping off a newborn for the first time, I had to do a quick check on him between bible study and worship. "I'm fine, mom, I want to play longer." His teacher said he did great and he was happy and excited when we picked him up. He and Clara both fell asleep on the way home and napped almost 4 hours. I snuck in a nap too! We praise God for the little "normal" things.
To God be the glory! Jonathan continues to do well. For breakfast he ate a whole pancake. He's starting to ask for snacks. So wonderful to see his appetite coming back. He's also got a lot of peach fuzz growing. It'll be interesting to see what his hair looks like when it grows out. My dad's post chemo hair was several shades darker and wavy. The doctors were deciding on his appointment schedule and will call me next week but said we'd be moving to monthly appointments! We're taking him out in public and might let him go to church either this weekend or next. Kids are so resilient! We promised him a trip to Legoland when he was "all better". I will have to start doing some research.
To God be the glory! Jonathan had a clinic visit on Monday and his blood counts were still falling but not in the transfusion range. They expected him to need blood products today and encouraged me to bring him in Tuesday if I thought his platelets were getting too low again (bloody nose). Instead of needing a transfusion today we got the fantastic news that his blood counts are recovering! His platelet count went from 35 to 149 which is just shy of normal. His red blood cells are still low but also increasing. His white count went up as well. So that means we have hit bottom and are on our way up and he's still not in the hospital!!! This is a first. He's always been hospitalized post-chemo with some kind of fever/infection but we've moved past the super immuno-compromised state and stayed home! Odds of having to be admitted are pretty slim now. We're overjoyed and praising God!
We've also had success the last couple days on the eating front. I never thought I'd thank God that one of my kids ate Fruit Loops but Jonathan ate almost a normal portion of cereal this morning which is huge for him. He also ate cheese, bread, and apples yesterday. Each food he's willing to try helps build his confidence to eat 26 / 218 CaringBridge Bringing family, friends and loved ones together when it matters more. He exclaims excitedly that it "tastes the same" so I think we're moving past chemo mouth. Jeff also pointed out that he's got a little five o'clock shadow on his head, so we've got hair starting to grow back. We rejoiced in the news the cancer was gone but the reality is sinking in more for me as we see our little boy come back to life. Clara can still out run him but its amazing to see them chasing each other around the house amidst peals of laughter. Beauty from ashes! Thank you again for all your prayers. Please continue to pray for his nutrition to continue to improve. His ng tube will have to removed and put in the other nostril on May 1 (they can only stay in for a month) so my fervent desire is that we can just take it out and leave it out by then. To God be the glory! I followed my instincts and took Jonathan back to the clinic this afternoon. He had some bloody dripping from his nose this morning. His platelets had fallen from 52 to 23. The docs decided to transfuse even though it technically wasn't low enough. But odds are he would've had almost no platelets tomorrow or Sunday when we're supposed to get 12-16 inches of snow. Thank God we got platelets today! We go back Monday morning for another check and they expect him to need more platelets and probably a blood transfusion as well. His white cell count had dropped by half since yesterday so he will probably have a very weakened immune system by Monday as well. Continue to pray against infection.
Please pray also for safe travel for our helpers. Melissa was supposed to fly out tomorrow but American cancelled all flights in anticipation of major snowfall. She's heading to the airport to try to get out tonight. Jan is scheduled to come in early Sunday but that's also dicey due to the predicted snow. Pray for safety and minimal headaches for them as they navigate delays and cancellations. Thank you for your prayers! Jonathan and Clara really enjoyed a visit today with their children's minister from our church in Texas. We love you Jana! FBC Grapevine is the absolute best. To God be the glory! Jonathan had a nice brief clinic visit today. I expected him to need platelets and possibly red blood cells but he didn't! At this point last cycle we were in the ER with basically no platelets and super low hemoglobin. His platelets were low and I might actually call and ask to go back tomorrow afternoon for a re-check. His platelets were at 50 and they transfuse at 10. With how quickly they've been dropping, I expect we'll probably hit transfuse level over the weekend. We're supposed to get a foot of snow Saturday/Sunday so I'd rather not be making an ER trek in the blizzard. I hope to negotiate them into a transfusion tomorrow even though we might not be low enough. The clinic isn't open on the weekends so the ER is the only option if he gets another bloody nose that won't stop. We're supposed to go in Monday for the next check.
He's running around the house with his sister and starting to settle back into the groove of being home. He ate a couple nibbles of breakfast this morning and bite of cheese for dinner. A big praise about the blood test today as well is that his white count is super high. The injection he got Tuesday is definitely doing its job. I don't know if we'll bottom out like usual but right now its higher than we've ever seen it. The magic ANC number to get out of the hospital is 100. He's at 11,600 right now. I joked with Jeff that we should let him go to Chickfila and lick the slide. ;) Thank you for your prayers! We're encouraged that he is doing so well. Jonathan got discharged yesterday around 2! The staff was so sweet. They brought in a cake and sang, "Hit the road, Jonathan, and don't come back no more". He was overwhelmed from the attention and still crying over getting the needle taken out of his port, but I teared up. So amazing to be done! We went back to the hospital this morning to get an injection. Even though we don't need his counts to recover for another round of chemo, they wanted to give him neulasta to help his white blood cells recover more quickly. We'll go back in on Thursday to see if he needs any blood or platelet transfusions. We can stay out of the hospital even if his white blood cells are essentially non-existent provided he doesn't have fever or signs of infection. So we keep praying that he won't go back in for a secondary infection.
Jonathan's weight has moved back up to almost normal but we're still not having luck getting him to eat by mouth. Pray with us we can find the right foods to get him eating. We're trying the incentive plan right now...he can't go swimming with an ng tube. We've also been promising him for the last month that we will go to Legoland when he's "all better" so we've emphasized to him that "all better" means no tube. Thank you again for your prayers. Its surreal to just be home and not be thinking about the next round of chemo. It was a tough, tough road but we feel so grateful that it was such a short one. Thankfully this cancer has a very low re-occurrence rate. The doctors say that if we can hit like 16 months without it coming back we should be in the clear. God is good all the time. We know that He had a purpose for this and we praise Him that He sustained us through it. Yesterday was fairly quiet. Jonathan did need a blood transfusion so they paused his chemo for a couple hours but then sped up the rate on it to catch up. He literally ran down the hall with me barely pushing the IV pole fast enough to keep up with him. He's doing miraculously well.
He will have his last sedation spinal fluid chemo infusion this morning around 9 or 11. There was some confusion last night about the time. Either way, his continuous chemo finishes around 1pm so we should be out of here mid afternoon. Thank you for all your prayers! Pray everything goes smoothly today and for us to stay out of here! We expect to be back later this week with no immune system and an infection but as Jeff said earlier, God can do a miracle! To God be the glory! Authored by Jeff
Two days remaining in this final round of chemo. Not much to report. I brought Jonathan a new Lego set when we started our "boy's weekend" Friday night. It has three bags and three manuals, and he has completed two of them. Generally speaking he has been feeling well today. He has complained occasionally about how his mouth is burning (likely a methotrexate mucus membrane irritation), but the MD's don't see any mouth sores in there. We have given him Tylenol and that has been successful at treating the discomfort. I don't think we developed any new sores in round four so I don't expect anything too terribly bad from this round either. We've been out of our room exploring the floor. We walked the halls a bit, and then got into the playroom where we found a tricycle that he took for several laps around the hall. Everyone is happy to see him doing so well. We're still on track to be done on Monday barring any unexpected complications. Then it will be a question of how far we can get into the "blood count droop" before we need to return to the hospital. I'm still praying that by some miracle we can dodge that. Soli Deo Gloria! |
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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