We didn’t really know what was happening. I think it’s because it was such a casual phone call. Maybe because it was the combination of positive phrases that made us devour every ounce of hope? I’m not sure what I was expecting that morning at the pediatric oncologist office but I know what I got. Ache. A very matter of fact answer. Your child has Rhabdomyosarcoma. She will need a year of chemotherapy. With treatment a 90% chance of recovery. Still waiting on the consultation from Seattle but they think it’s embroynal- the less aggressive form.
Blank stare. The only question I could think of was, “Will she lose her hair”?
“Yes, she will.”
I managed to hold all of my numbed emotions until that answer. She will lose her hair. Such a visible sign of the inevitable. I hung my head and cried. I couldn’t think of even one more question to ask. Greg faired a little better than I and managed to get some basic questions answered. We were told she would have some tests to determine if it had metastasized and what type of Rhabdomyosarcoma she had. After the doctor left the room we needed a few minutes to collect ourselves. Yes, “collect ourselves” collect the former life shattered on the ground of that office the moment those words were spoken. We cried all the way home. We didn’t say too much on the drive home, we couldn’t. Lane was with us. She had to go with us for an exam. She was excused to the playroom while our world fractured . She was playing with toys, laughing and singing while we wept.
Oh God, please heal my girl. OH GOD please take this away.
God’s gentle reply that day was, “I’m Here”
The days following that appointment were hard ones. We tried to live in the moment and enjoy the precious seconds with each of our children. Belle handled it very hard (she still does). Belle is a very softhearted little girl. She was very angry in the beginning, not knowing why we continued to take Lane to these doctors that hurt her. How can you explain something to a 5 year old that we can’t grasp ourselves? We couldn’t even find the words to pray. Save our daughter Lord! Make this all go away! Give us wisdom! I am grateful for my sister, Tracy, who reminded us that when we don’t have the words the Holy Spirit is constantly making intercession for us. Thank you Lord!
A lot of people have been praying for Lane from the birth of this story. I am so very thankful. Those prayers kept us afloat many hours, days even. God constantly reminded us that he was with us through prayers and genuine love from His people.
The weeks following Lane’s diagnosis she had an MRI, CT scan, Bone scan, Bone aspiration, Pet scan and several blood tests. Oh, not so bad, right? She will just have to lay in a machine and get a few pictures and go home? Yes, maybe for an adult but a child is completely, heartbreakingly difficult. Lane had to be sedated for every test. Yes, every test! She hates needles (like most kids) so an IV was a nightmare for her. Our nights before the tests would consist of Lane crying and begging us not to take her. “No needles mommy”, she would sob as we tried our best to distract her from the early mornings events. It was a twisted thing really, we smiled and said it would be ok but inside we wanted to take her and run too.
IV’s, in the beginning, always led to the “goofy meds”. Medication that made her, well, goofy. The first time she had this medicine it made her so spacey, not my Lane. It made me cry because it was so bazaar. She hated it too. She eventually realized what the medicine did and instead of putting her at ease it made her afraid because she felt out of control. I’d like to say that even after this medicine everything went without a hitch but I guess that’s just not reality.
Just a few snapshots of those moments:
-She woke up during her CT scan, completely terrified and crying for us.
-I had to leave right before her bone scan because I was !losing it! and couldn’t stomach seeing her like that. “Mommy, where are you going” she cried as I plunged into the exit door and grabbed the closest chair.
-She had a very large hollow needle put into both hips for her bone aspiration to draw marrow and take a sample of bone.
-She had to sit still for one hour while the radioactive serum circulated her system. (that was tough but the manger of the department was awesome)
Finally, done with these tests.
Ct scan- CLEAR
Amen, Amen, Amen it hadn’t spread! Praise God, it’s no where else in her body! The next step was the surgery for the port but
with all of this hope from these test that came back clear we really started to think…what if it’s a mistake? What if the pathology came back from Seattle and it was read wrong? We searched for hope in waiting for that consultation and final pathology report to come back.
…and so we hoped…