Eli handled his 4th chemo round with minimal side effects. He surprised me by waking up our first day home with energy and excitement to play. We were able to take advantage of him feeling well by attending birthday celebrations for my niece Hadleigh on Saturday and then for my dad on Sunday.
Sunday evening, we sadly learned that our little 2 year old friend on this neuroblastoma journey breathed his last breath and was welcomed into Heaven. I am just absolutely heart broken for his family and the pain they experience each minute of the day. Noah was in the immunotherapy phase of treatment (which is the last phase) and only had 3 more treatments to go before this nightmare was all over for him. I spent some time with Noah’s mom last week while we were both inpatient. We went for a walk on Wed to get some air. At that time she was mainly concerned about managing Noah’s pain from the immunotherapy infusions. We went home on Thursday. The plan was for Noah to go home on Sat but instead everything took a devastating turn for the worse for them. Instead, Noah went home to Jesus on Sunday. Life is fragile and can turn in an instant. We pray in thanksgiving that Noah is pain-free and in the most perfect place. We pray for Noah’s family in their grief and suffering. I just have no words.
I was still reading about and processin Noah’s death when Chris and the kids came flying into the house in a rush. Eli had grabbed one of those reflective sticks that we use to line our yard in winter for snowblowing. (Abby had been dribbling her soccer ball through them). Eli decided to help put them away and in the process, he must have grabbed the wrong part and ended up with fiberglass slivers all over his hand. We panicked and little because he was in a lot of pain but we also knew this meant he had a lot of microscopic cuts in his hand. With counts being low, this is a concern for bacteria and dirt, which can lead to infection and serious things happen with infections. Chris spent the next 2 hours carefully picking out the slivers while I held Eli. We got most. Eli was a trooper. We finished at about midnight and then after that he wanted to go for a walk. Earlier in the day, he earned his first prize from completing his sticker chart (reward for cooperating with medicine taking) and chose a hard hat with a flashlight on it. (Similar to a miner’s hat) He was anxious to try it in the dark. So, off we went, he and I, at midnight for a walk. When we got home he was hungry. And since we need this peanut to gain weight, we couldn’t deny food. We finally made it to bed at about 1 am. Have I mentioned that Alex sleeps through the night? I am shocked (the other four did not sleep through the night until they were at least one) and so very grateful that he is letting us get uninterrupted sleep. Because we are exhausted anyway. Eli’s hand is still sore and we are keeping it covered during the day to minimize contact with germs.
As usual, Eli’s counts started dipping and he needed blood on Tuesday. Coincidently, Chris had signed up to participate in a blood drive at work. As God would have it, Chris was donating at the same time that Eli was receiving. So we facetimed to share the experience. That was another 6 hour day at the clinic/day hospital.
Wed was a low-key day for Eli. He had a slight fever all day, wasn’t hungry, and just sluggish. Late in the afternoon I took his temperature and it was 102.5. Anything over 101 requires us to call ahead and go in to the hospital. Luckily my mom was over because I literally dropped everything and left. Chris met us at Children’s. At the ER, they drew his blood to check for infection. One of his lines was sticky again so he needed TPA in his line to loosen it up. They also gave him fluid and he rested. We were there for 6 hours before finally gettin admitted up to the HOT unit.
We will be here for a couple days. Fever is down slightly (thanks to Tylenol). Eli received some platelets. He may get blood again today. Now we just wait it out until his counts come back.
15 years ago on this day Chris & I said “I do.” Never in our wildest dreams did we think we would be in a situation like this. Since it took so long to move here from the ER last night we both stayed overnight. What a weird experience to wake up in the hospital and say “happy anniversary”. We will spend our anniversary in a (previously scheduled) meeting with Eli’s surgeon later today. Surgery will be July 26 to remove the tumor from his right adrenal gland.
The three big kids leave for Camp Kesem on Sunday. This is an amazing, free camp for kids who have a parent who has/had cancer. This camp is made possible through donations and fundraising that the college counselors work hard at all year long. We go to the University of Wisconsin (Madison) chapter. They are very much looking forward to it. I am excited for them to have a fun-filled week in the midst of a disrupted, stressful, unpredictable summer.
I do admit, after the events of this week, I am feeling a little defeated, angry, and very, very tired. I’m trying my best to hold it together, because negativity is not going to help Eli at all. I’m hoping the next few days are uneventful and pass quickly. I pray that Eli will get somewhat of an appetite back (right now he won’t eat or drink anything). I also pray that he will start feeling better and the joyful, fun-filled spark will retun to him. Eli is just sad right now. He wants to go home.
Your courage is so inspiring! You can’t imagine how many lives you have touched.
God Bless you all.
God bless you and your family Always!
I think of you often and hope and pray that you can all”Hang in there” this is such challenging stuff. My prayer is that Eli will not have so much pain and will be able to fully enjoy the “good moments”. You all are incredibly courageous and you truly have GRIT. YOU are a model to all those around you. God Be With You!!!!!!! Marge S.
My prayers and best wishes are with you–for anniversary and for being great role models and parents for your children. July 26 is the feast of Sts. Joachim and Anne–Jesus’ grandma and grandpa. So, put in a few prayers for your parents as well. Many prayers are with you from all over the world. Stay strong and give Eli a hug from me.
sending hugs and prayers to you Jamie! Continued prayers for Eli too! Happy Anniversary to you and Chris. You too are an amazing couple and amazing parents!
My heart is heavy.
Amen to what Uncle Buckwheat wrote. Praying too!
Jamie and Chris, your courage and Faith are an inspiration. Praying that you will have strength and perseverance and keep trusting Jesus. Praying for healing and peace and joy for Eli and all of you! I love you!
Continued prayers for strength and rest for all of you. Hoping your little buddy feels hungry today and that his pain subsides. Please know we are all holding you close in our daily prayers.
Praying Jamie. Every single day. Holding you tight in my arms. Praying Eli smiles and has a good day, this day forward!