It's been 100 days since Kade was diagnosed with cancer. Wow. 100 days of tests, scans, chemo, frustration, sickness, worry, exhaustion, and heartache. But it has also been 100 days of miracles, relief, learning, faith, changed hearts, gratitude, and hope. It's easy to focus on the bad and the hardships, but I also can't help but think of all the good that has come along with this trial. Kade is my little survivor! God's little warrior. So proud to call her mine.
We got to come home from the hospital last Monday. Yay! We are so happy to be home.
Kade did test positive for the CMV virus which can be pretty serious in immune deficient kids. Usually people with AIDS or an organ transplant get it. The risks are that it can become a disease which can affect your liver, kidneys, lungs, etc... So we are treating her pretty aggressively with twice a day infusions into her port with a medicine called ganciclovir. This is a harsh drug which also causes her counts to go down so we still have to be careful of infections and sickness. They taught us how to do the infusions at home. We are also giving her two shots a day with an anti clotting medicine since she had a clot in one of her ports. More stuff to do for us! We'll take it if it means her being home.
She is so much happier at home. I really do thinking her siblings are her best medicine. She just plays and laughs with them. We are off all her anti nausea meds and she is starting to eat a lot of normal food again! She's lost the strength to walk again but is starting to walk around the furniture so that is a good sign.
After this last scare in the ICU we were left a little nervous to continue with the intense chemo. We have a meeting set up with the care team to discuss all our options and the risks and positives of everything this Thursday. I'll let you know what we decide. We do have to wait for the ganciclovir treatment to be over and her counts to go back up before we can start another round of chemo anyways so I'm not sure what our timeline is yet.
Once again, we are so grateful for all your positive thoughts, energy, and prayers. Miracles are real and God is good. There is no doubt in my mind that He answers our prayers large or small. Please pray that we will make the right decision for her care going forward according to His plan. Love you all!
I believe in miracles and I know God hears us praying. I don't know how families have the strength to handle such heartbreak as watching your child go through so much. I know when you have a moment to think you must have such a hard time. Stay strong, stay trusting, and continue to hold each other up with your love. Her pictures made me cry, what a beautiful baby girl and to see the reality of what she is going through on her little head tore me apart. I will continue to pray constantly.
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