These are some very tough days for Jonas. The one-two punch of chemo and ratiation is very difficult to bear. Just over a month ago when Jonas was between the induction phase and the consolidation phase with radiation just beginning, he was feeling faily well and putting on weight. He worked his way back into the chemotherapy and two weeks ago had one of his worst experiences with chemo in a long time. Additionally, the affects of the radiation are cumulative and as he gets further and further into the regimine it is so painful. It has caused a pretty good burn on his left temple, cheek and inside his mouth, the roof and throat. The chemo too causes sores on the muscosa membranes inside his mouth and throughout his digestive tract. Because of this and because the radiation has caused a tightening of the muscles on the left side of his face (and he can barely open his mouth again) he is once again being fed through the tube on his abdomen ( his g-tube ). Just swallowing is painful and he talks very little, if at all. It just hurts to move his tongue. This past week he has been fighting some infection and has had several blood tranfusions and courses of antibiotics. He is losing weight again, riding in the wheelchair instead of walking and his spirits are low. But we are nearing the end of radiation. He has only two more treatments of radiation to go... which is good news, but the bad news is ... he has two more treatments of radiation to go. Then proton therapy radiation will be over. Chemotherapy will continue through the end of March, at least. I have been having trouble getting pictures to upload on this page lately but will try again today, especially so that when he gets back you won't be too surprised at how he looks. Lots of people have been asking when he will be back in Kansas City. Our plan is to leave Houston over this upcoming weekend. He is very adamant about going up to school sometime next week, probably not to attend any classes but to to make arrangements for next semester and to see some teachers and friends. Of course all this is dependent upon his health and what he can tolerate....even the travel. We will see. Thank you for all your well-wishing. Every word of encouragement and hope is dear to our hearts.
Thinking about all of you....now and always. As much as I hated going through it all...I would rather be going through it again instead of Jonas suffering like he is. It breaks my heart reading everything you say and knowing and understanding how he feels. I have something for Jonas that I brought back from Germany but haven't gotten around to sending it. But I guess if you guys will be home soon I can hand deliver it. Sending lots of love and hugs to both of you.
Posted 6 hours ago
by WENDIE TRENT
Know that you are ALWAYS in our thoughts and looking forward to seeing you here at home soon - you have endured so very much - more than any of us can imagine - wishing we could ease your pain in some way, but just remember how very loved you are and the number of people behind you - you are a remarkable young man - we love you!!!
Posted 7 hours ago
by Kathy Argent
Kristen, I have been following your journey with you through this site. I am in awe of your courage and strength and your faith. What a couragous woman you are. Although, it doesn't surprise me, you were always such a wonderful person in high school and always wore a smile on your face. I remember your encouragement to others as well. I am praying for all of you and hope that your family will all be together soon. I am also praying for Jonas to get much needed relief from his pain. What a remarkable young man you have. I am lifting you up today that HIS mighty hands will comfort you and comfort Jonas' pain. Kathy Argent
Posted 7 hours ago
by Susan Klene
So sorry Jonas has to go through all those horrible side effects. We're praying every day for your comfort and healing Jonas. Glad you will be able to head back home soon!
Posted 7 hours ago
by mel you
My heart breaks for your son. There's just so much for him to bear. I know that he is a strong young man and is so profoundly loved and well supported. But this would be hard on a grown man 10 times his size. It's not surprising that his spirits are low and his courage is tested. I hope it will help him to remember that a brave person doesn't need to feel brave every moment of the day. Being brave isn't about never feeling fear or anger or being tired - it's being all those things and stepping up to meet the challenges anyway. He has continually done that. So have you. You both are such a testament to the bonds of love: Love when it's easy and when it's hard. Love when it's peaceful and when there's pain. Love when there's first light and darkest night - there is always your love for one another. I will be thinking of you both through these last couple of radiation treatments and sending you thoughts of peace and healing. I will also keep my fingers crossed that Jonas can get back to school to see his classmates and teachers very soon. I have a feeling that he will find over 1,000 pairs of open arms waiting for him. And so many for you. My best to you, Mel
Posted 7 hours ago
by Becky Jackson
Jonas, you are so strong!! You can do this, Honey!! Just a little longer. We know you can do it. We are praying the infection goes quickly, and that the pain becomes manageable.
Posted 8 hours ago
by Amber Dahm
Cannot wait to have you guys back home! We miss you! Sending lots of love your way! Hopefully you will get out of Texas this weekend and the trip will not be too much for Jonas!
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