Jonathan went back to the hospital today for a quick check up and they think he's doing great! We go back Friday for a bunch of scans to check for cancer activity. We should hopefully get the results Friday afternoon. If they don't find any cancer, then we do one last cycle of chemo and we're done! The doctors warned us that even scar tissue can sometimes "light up" on the scans so if they see something they're not sure about, Jonathan might get some needle biopsies to test any suspect areas. If there is active cancer, then the oncologists will lay out a new treatment plan that we've been told will probably be another 2-3 months of chemo. Pray earnestly with us that the scan is completely clear. He will probably start chemo the following Monday if his white count is high enough.
Jonathan is definitely feeling the best he has since he started treatment. We went to the park yesterday and he played a little and walked the 5-7 minutes home. He and Clara are thrilled to be back together and are following and chasing each other around the house. Jonathan is still a bit wobbly at times on his feet but its fantastic to see him feel up to running around and taking on the stairs to the basement. His cousin Annie and Aunt Lisa are here to help this week and he's enjoying playing with them. His nausea is also getting better. I've been slowly backing off the meds and he hasn't vomitted in a few days. He still isn't interested in food. He told me yesterday he didn't want anything for breakfast because "food tastes weird". I'm not certain how long chemo impacts taste buds. For now we're just doing the tube feedings and he's responding well and the weight is starting to creep back on. Thank you for your prayers! We're so thankful and grateful to see our little boy feeling so "normal". The first morning home, the first words out of his mouth were, "it's good to be home." He knows he has to go back to the hospital for another stay but we're praying for just 1 week of chemo and then whatever recovery time he needs once his counts drop again. To God be the glory!
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Jonathan is home! He made the needed blood counts this morning and we were able to get discharged fairly quickly. Praise God! So today we celebrate three things. We celebrate the resurrection of our Lord and Savior, Jesus Christ. We celebrate that Jonathan is home. And we celebrate that 6 years ago today, my Dad left behind the pain and suffering of cancer and went to be with God. Emotions are running high in our house and we rejoice in God's provision and His love for us.
To God be the glory! We got a lot of snow yesterday! It was fun to spend the day home with Clara. Jeff gave me a quick lesson over the phone and I got the snowblower up and running and had to clear the driveway twice. We thought the roads would be worse this morning with everything re-freezing overnight so I made it up to the hospital around 7pm. Jeff made it home safely.
Jonathan continues to struggle with nausea and poor appetite but otherwise feels pretty good. We're doing some craft projects this morning and when the resident saw his Lego stash he asked if he could come build later. Jonathan's white blood cells are still at zero so we're just hanging out waiting for that to change. His platelets are low again so he will probably get a platelet transfusion tonight. Jonathan was supposed to have a pet scan Monday and start chemo Wednesday but they don't think his counts will recover in time so they've pushed the scan off to next Friday, April 1. Continue to pray that scan shows ZERO cancer activity. One of our oncologists shared last night that she was "cautiously optimistic" based on an earlier scan that showed very little cancer. Please pray for our "helpers" to have safe travel this weekend. Jan is flying out early Saturday and we're supposed to get more snow Friday night. My sister-in-law Lisa and oldest niece Annika will be here Monday for a week. We're so grateful God has provided loved ones to keep Clara's little world as normal as possible. To God the glory! Authored by Jeff
Jonathan just keeps feeling better and better. I can't seem to keep him his bed today. Fortunately that's not a requirement. He's been playing with light switches, searching through drawers, walking laps in the room. Clearly, we've spiked a bit of cabin fever. Marianne was supposed to come out and relieve me today, but snow-magedden hit in full force. Fortunately, my office also closed, so I'm not missing any work today. Remote work wouldn't have been as easy with Jonathan jogging laps in the room and chatting about everything, so it has all worked out pretty well. The weather seems to be warming up a bit now, but Marianne may wait until tomorrow to come out and send me back to work. It is supposed to be sunny and in the 50's tomorrow, so that will equate to a pretty massive snow melt-down. The roads will likely be dry by noon tomorrow. It's pretty impressive how fast the snow disappears once the sun comes out. Jonathan's ANC has dropped further to 10 today, which is essentially zero. This may be the bottom, at which point we are now looking for an upswing. He needs to be above 100 and fever free for 24 hours to be discharged. Fortunately the only fever has been the cabin variety. Estimates remain that we will be here through the weekend, the past rounds have kept us at an ANC of zero for as long as a week, so I suppose there is a chance it could be longer. Thanks for all the prayers. It's really nice to see him being a 4yo boy, even if he's captive in a hospital room with no immune system. That small detail doesn't seem to be phasing him much. Soli Deo Gloria! Jonathan did well overnight. His blood levels are dropping as expected from the chemo. He's going to get another unit of blood and a unit of platelets and then they will send us home around dinner time. We need to come back Wednesday for labs and we might need more blood then as well. Thank you for your prayers. Hopefully we can have a little longer at home.
To God be the glory! Authored by Jeff
Just kidding! He started spiking a fever just before discharge. Blood counts show his ANC has fallen to 170, so his immune system is on its way out. They plan to keep him inpatient until his ANC hits bottom and then once again recovers. In case some of you have forgotten...Cancer Sucks! Pray for endurance for all of us as we are likely going to be at the hospital through to the weekend. Marianne and I are going to resume our "normal" hospital rotation routine. Pray for Jonathan's counts to bounce back quickly so we can get home before the next round. Soli Deo Gloria! Jonathan started to have a small trickle of blood from his nose on Saturday and it would stop and start but overnight it wouldn't stop. We called the doctor on call around 3am and they told us to come in. I just got his lab results and he essentially has no platelets and his red blood cells are also extremely low. So he's getting at least two units of platelets and one or more units of blood. We will start the transfusions in the ER and move up to the oncology floor in an hour or so. The oncology doctors will have their own opinions but the ER docs think we're probably staying at least overnight. They can't give him as much blood as he needs all at once and have to space it out.
The good news in all of this is that his white count is still holding strong. So he's less at risk of catching some opportunistic infection. Hopefully we're just here for a day or two and he'll feel much better with his blood counts in a better place. Continue to pray for his eating as well. He's had a lot of nausea and hasn't kept down all of his tube feeds. He still won't eat anything by mouth. This too shall pass. To God be the glory! Jonathan made it home last night around 8pm. It was a very happy homecoming for everyone!
On our first day home from the hospital, we spent half the day back at the hospital. ;) Jonathan had a 45 minute physical therapy appointment and then was sedated for a chemo infusion into his spinal fluid and he also got an injection to encourage his white blood cells to recover quicker. We setup next week's appointments. He'll go back in on Monday and Thursday for blood count checks and physical therapy appointments. Our prayers are that he stays healthy and can stay home for a longer break. He's always caught an infection post chemo since his immune system is basically shredded by the chemo. We had new chemo this round that might not have as severe an impact on his counts, so we're praying we stay out of the hospital. Pray that he starts eating more food. He's getting pretty much all his nutrition from the NG tube. He had started eating a little more in the hospital but the chemo caused nausea and has killed his appetite again. We can keep feeding him through the tube but would love to see him bounce back and be able to eat food. Pray for him to regain physical strength. He can walk but is pretty wobbly on his feet. We need to see him run and jump and be a kid again. He is currently scheduled to go back on 3/28 for PET and CT scans to check for cancer. If none is found, we do one last cycle on 3/30. If they find anything active then we might be in for 2-3 more months of treatment. Please pray fervently with us that they find no sign of cancer. Thank you for your prayers! To God be the glory! Jonathan will finish his chemo infusion at 7pm tonight and then we get to leave! We have to be back at 8am for a spinal chemo appointment in the clinic but it will be worth it to let him sleep in his own bed for the first time in almost 4 weeks! Quite a great birthday present for Jeff to have everyone home!
Please pray that no last minute problems crop up to keep us here. Also pray against infections while we are home. Next chemo cycle should start around 3/30 so we've got a shot at a little time home. 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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