This week has just been a rough week. BMT is such a serious journey filled with so many tears, heartbreak, smiles, celebration and pure hell. There were four families on our section (4 sections in MN) of the BMT floor and I fell in love with all of them. I will never ever forget them nor will they ever leave my heart.
Maddie was at the end of the hall and her mom gave me so much hope and great hugs. Maddie had ALL and was inpatient for 93 days due to so many complications. The day she walked out of her room with her family everyone was cheering and I couldn’t stop crying tears of joy. A few weeks later I saw her, they had been on their boat on the lake and they got the call she needed to come in due to a positive blood culture. Over the weeks we would see her in clinic and while there were complications they all handled it with beauty and grace. Maddie and her mom have been on my mind so much lately and today I found out Maddie has been given two months to live. Please please keep them in your prayers. I still believe in miracles and that God will be there with them and his will is absolute but please pray for them.
The room next to them was Aditya, he never engrafted and last I had heard he had had his second BMT but it wasn’t looking good. Unfortunately he doesn’t have a care page and their English wasn’t very good so I don’t know what has happened to this poor baby boy.
The next room was Sam. Sam made it back to Iowa to sleep in his own bed for one night before he ended back in the hospital. He has been inpatient for over a month in and out of PICU and he relapsed as well. J&J I miss you guys so much and not a minute passes where I don’t think of you, Sam, B, and E. They all need your prayers, Sam has been through so much with no end in sight.
Our SDS family has lost two kids in the last week.
Yesterday I was talking with M’s dad, M was on the other section and was admitted the week after Kimbell. He asked how she was doing and we shared a laugh of how we talk about organs and complications as oh they are JUST having this problem or that problem.
Someone last night made a comment about how they are so glad that Kimbell is better now. Kimbell isn’t better now. She fights for her life every day, we just put a positive spin on everything because of who and how we compare our journey to others. K isn’t in PICU, and we haven’t been given a time frame of her going back to her creator, and she doesn’t need a second BMT but she is still really sick. She has two central lines, two catheters hanging out of her chest, she hooks herself up to infusions everyday, she’s depressed, her kidneys numbers keep going up, and she has only puked 5 times today. We simplify everything in this world because we know how incredibly blessed we are so it is just mild kidney failure or just walking with a walker and leg braces (M) because compared to the others we know who were with us everyday on the floor we are so blessed. Our kids aren’t better just because they are home, they are still fighting for their lives and taking a zillion pills a day. They handle themselves with far more grace then I ever could but they are still really sick and if anyone thinks for once second that their blessings or the fact that they could still die at the drop of a hat escapes them they are sorely wrong.
These kids, families and others going through this process need the prayers and support of everyone they know. So here is my challenge, take the time to send a text, a card, a note of encouragement, something that simply acknowledges or supports families going through these long journey’s like ours that you might know because the journey isn’t over when you come home. The smiles, the struggles, trials and tribulations continue and we are all struggling to keep our heads above water. Please pray for Maddie, Aditya, Sam, Megan, Kimbell and anyone else that you may know struggling. It is a long and lonely journey.
Thanks for indulging me in my vent, they rarely happen but our hearts are just broken this week.
P, K, J