Happy at home!
Alexis’s recovery has been truly MIRACULOUS! & I don’t use that term lightly! I am so thankful that we are home, we anticipated being at the hospital for many weeks. She had 12 chords/ lines coming out of her little body, and if you saw her in the ICU, you wouldn’t believe she is sitting up, trying to crawl, laughing & smiling. She is in a little more pain today, I think she has done too much. The surgeons said, let her do what she wants, she will set the pace. She gives a new “pain” cry when she over-does. It breaks my heart, it’s a different cry than we’ve ever heard before. I feel so bad sometimes, like she looks at me like “Mommy, what have you done to me?” But she is still smiling and doing all her regular things. It’s sad that to Alexis this is life, everything is going great, and then she has to hurt again. How can she understand? But it’s all she’s known. She is a miracle baby! She will be one year old in a month. I love her so much, it brings tears to my eyes just to look at both our girls, I didn’t know this deep of love existed. I know we are to love God more than our spouses or children, but sometimes it’s hard. I do love God so much, and I know he has the “plan”, but I love these precious ones so very much.
My grandma, my mom’s mom is in the hospital tonight with a broken arm, from a fall yesterday; and graves disease and a congentative heart failure; and it’s her 90th birthday today. Please pray for my grandma, and my mom; who is suffering to see Alexis in pain & her mother and want to help her mother also.
I’ve read a lot lately about suffering, and that God uses us to glorify him when we suffer. We are to rejoice in our suffering, hard concept to grasp; but I’m beginning to. I also read that God can be seen more in our pain than even the miracles he gives. I always think and tell God, that when this is over & I have Alexis healthy in my arms, that I will use my life just to serve him. That I will speak publicly about God’s miracles, and share how much need there is at Children’s hospital for people to volunteer and for music and how people just waste their gifted time thinking only of themselves. But the point is, that then might be too late, I may not be able to at that time; and God doesn’t make “deals”.
You never know how much you need God till God is all you have! Right, Janyce????
I want to be used by God thru my suffering, not Alexis’s, she shouldn’t have to suffer.
On a medical note, her bone marrow biopsies came back with no sign of the cancer cells.
We are awaiting (me anxiously) for the pathology results from the surgery. They did a biopsy on her liver tumors and are studying the main tumor; they should know something about how “mature” the cancer has become. I pray that the cancer is very, very OLD! (mature) preferably dying…!
The doctors have the results, but haven’t contacted us yet. It really doesn’t change anything, Alexis is doing wonderful! We are so thankful for the prayers during this rough time, we are so thankful to the Surgeons, and all the medical community who gave her amazing care, and made such great decisions on her behalf.
When we met with the surgeons, prior to surgery, I inquired about transplanting her liver, since no surgery can touch it (due to the size and number of tumors) It broke my heart to find out that Alexis will never be eligible for any organ transplant, because of her metastatic disease of this cancer. It’s hard to hear that our baby could never be saved, if needed with an organ.
Please pray for her remaining kidney and adrenal gland to do their job, and for her body to continue healing from all the massive trauma it’s been thru this week. She is truly a miracle and her fighting spirit is AMAZING!
Thank you God for all you’ve given our family!
Jill
