We're home! We came home Friday afternoon and have survived a full 24-hours so far. Case has loved being home. Even though he isn't smiley in these pictures, he has actually smiled more today than in a long while. You can tell he's happy to be home and out of the hospital! He really perked up in the hospital on Thursday night when they took him off the IV and all other tubes.
The poor guy has been through so much. We can already see many changes in his physical appearance. He has lot a lot of weight. For those living close, you know that Case has always been a chunker, in the true sense of the word. Yesterday, after all the swelling from the IV fluids finally went down, we were shocked to see how much weight he has lost. His skin is soft and saggy in some areas, like someone who has experienced an extreme weight loss. He now feels like Graydon did as a baby, who was always super skinny. He has his appetite back and is eating some solid foods, so hopefully we can help him gain some weight back. At least he started out with rolls to lose!
We've already noticed that his eyes now have a gaunt, dark-circled look about them. It breaks my heart every time I look at him. But no matter what changes he goes through, we are so happy to have him at home with us. Big brother Graydon is very happy, as you can see. He has been very gentle and always asks before he touches him.
We have gone home on two anti-nausea medications, as Case has proved already that vomiting will be a trying side-effect of the chemo. Fortunately we have been vomit-free since coming home. We are sanitizing our hands constantly and being ever vigilant about anything and everything that comes into our home! His white-blood cells will reach their lowest this coming week, which means he will be the most susceptible to infection.
We have two clinic appointments this week where they will check his blood counts and liver functions. Because the tumor is so large and pushing on the liver (blocking some of its ducts), they need to make sure his liver functions aren't worsening, hence the two visits a week versus the regular one visit. In two weeks will be admitted back into the hospital for round 2 of chemotherapy. It's strange to dread something and want it desperately at the same time.
Again, thank you so, so much to everyone who expresses their feelings to us. It is a comfort (especially now that we are confined to the bubble of our house) to know that people are thinking and caring about us. We have already benefited so much from people's dinners, care packages, and goodies. Thank you again so much!
Keep praying that Case will be MYC-N negative and that the chemo will target his tumor with a vengeance!
Emily,
ReplyDeleteThank you for writing on the blog. I have been thinking about you all. Sending love and hugs your way! Mary
Welcome home you guys!! We are so glad to hear that things are looking up!! We always have you in our prayers.
ReplyDeleteI am so glad you are home. It was so good to see you yesterday. You are all so special, wonderful, amazing, and strong! You are in every prayer!
ReplyDeleteSo glad you are home and Mr. Case is feeling better and a little happier! There's no place like home! We pray for you guys in every prayer; even when Elle says the prayers she remembers "Baby Case" without us having to prompt her! We will continue to pray very specifically for him to be MYC-N negative and for the chemo to work on that nasty tumor!
ReplyDeleteHope you are feeling the strength of many prayers by many who know you and many who don't lifting you up, and the comforting hand of the Holy Spirit.
Love you guys!
Glad you guys are home. Thinking about you often!
ReplyDeleteYay for the smiles! We are so happy you are home and that he is feelIng a bit better. What a sweet little man. You are always in our thoughts and prayers.
ReplyDeleteYay! I am so glad you guys were able to come home. Love to you all!
ReplyDeleteI miss you! I wish I could come over and hug and squeeze on the kiddos. I hate cold season! I am so so happy you are home...Seriously, there is no place like it. If you need anything I can provide- I'm only a phone call away.
ReplyDeleteLove ya!
-Kendra
So glad to hear you're home as a family, that's great news! I love the sweet picture with Garydon's arm around Case.
ReplyDeleteWe love you guys and are praying for Case.
Love, Jess
Continually praying for your family....for Case.
ReplyDeleteThe Leighton Family