Let me start with a huge THANK YOU to every person that had a part in Sophie’s 5K on Saturday! Whether you volunteered, participated, donated to the run, bought cards for the fundraiser, etc. we truly appreciate everyone that set time aside for us! Almost $6,000 was raised for Sophie’s bills and we are so blown away by that-that’s huge for us, so-thank you thank you! If anyone else would like to donate towards our bills, you can click the GoFundMe link on the menu in the top left corner of this webpage. We appreciate any and every bit of help.
Sophie had an uneventful weekend. She’s had a few throw ups and blow outs but, overall her tummy seems to be settling down and accepting the G-Button quite well. Her incision sites still look great-no swelling or redness. She continues to be fever free and has been working hard in all of her therapies! We have started trying to let her drink small spoonfuls of water and she is doing pretty well with that. She’s also been very active and smiley and trying so hard to make sounds! ‘Ma’ is her sound of choice right now and I’m claiming credit that she’s trying to say Mama. That may not be the case buuuuuut-I carried her for 9 months and was in 13 hours of labor so I get to claim that she’s trying to say Mama. Haha!
Like I said, this is a BIG big week for our Spartan Baby. Since she’s been doing so well and all of her blood work and urine numbers are looking great-it was decided that she can start chemo a day early. That seems small but it gets us one day closer to transplant! She’ll get her *hopefully* final dose of Methotrexate tonight and it will run for 24 hours. Then we will hang out here in the hospital until Friday. Once the chemo leaves her urine and as long as her symptoms are managed, we’ll get one final PET Scan and Bone Marrow Biopsy Friday morning. Well, not FINAL forever but, final for now. Then we will probably be headed back to our inpatient rehab facility until we get our transfer to Cook’s scheduled-it looks like we might be headed there on the 13th but that’s tentative.
These tests are huge. She has to still be in remission in order for us to still be eligible for transplant. I don’t know what it looks like if she’s not in remission and frankly I don’t want to know. On paper, she should be in remission-her blood work has all been in ‘normal’ ranges and she’s had no fevers or complications of any kind. We will hopefully get preliminary results Friday afternoon to at least hopefully take some of the stress off of our shoulders. I have a love/hate relationship with Scan day. I HATE the anxiety it brings us all, I HATE sedating her for 3+ hours, I HATE that she has to get intubated, I HATE waiting for results….I HATE all of it. All of it except that fact that Scan day gives us answers. Scan day is a necessary evil but, having scan days means she’s still around to be scanned. So as far as I’m concerned, I’ll set up camp in waiting rooms and pray through scans for the rest of my life-and that’s ok. It’s mostly a hate relationship but, answers are always good, even if we don’t always like them.
1. Thank you Lord for a happier Soph that’s feeling much better! Thank you for less tummy troubles, no fevers, and no complications! Thank you for PROGRESS!!!
2. Pray for continued protection from infection, more side effects from chemo, vomiting, and any complication.
3. Pray for scans-BIG powerful prayers-set an alarm for 9:00 on Friday morning to pray for NO CANCER, no complications from sedation, and again for NO CANCER!
4. Please continue to pray for complete and forever restoration for Sophie. We serene a BIG and mighty God and the same power that Jesus used here’d on earth lives in those that put their faith in Him. I fully believe that mass prayer is heard. She will be fully restored-no cancer and no brain damage or deficits-forever. It won’t be fast but, it’ll all come back.
5. Pray for our SCANxiety. That hate side of our Scan relationship is really hard.