I almost have my blog caught up to Sophie’s current updates. We are still at the hospital, it still sucks.
June 29, 2017
One of my biggest hopes through all of this is that I can remain transparent. Social media is a great platform in situations like ours where you need to update a lot of people at once but, it’s terrible in the sense that you don’t get the full picture. It’s so easy to only post the good things, the positive things, the sunshine and roses moments and leave out the hard things for sake of appearances. I think people like to seem to the world that they have it all together all the time. If there’s someone out there that actually is that way in real life- tell them to write a book and I’ll buy it!
We have, through the grace of Jesus, been able to remain mostly positive in the last 6 weeks. Sophie hasn’t had that many hard days and once the shock wore off we were resolved to take one day at a time and make the best of it. That’s not to say there haven’t been hard moments-moments where we’ve looked at each other and said ‘how is this our life?’ Overall though, we’ve been ok.
Tuesday was not one of those days. It was probably the worst day since diagnosis day. I obviously can’t write out every detail because anyone reading this has a life and can’t sit and read 6 pages of my life but, I’ll outline what all happened. We left home around 7. Sophie’s Pet Scan was supposed to start at 10:30 but, her blood sugar was really low from chemo and not being able to eat after midnight so she got finger pricked 4 times throughout the day to monitor it. Then because of that, they had to start an IV before she was sedated. Her veins are shot from chemo and the low blood sugar so they had to dig around in my baby’s veins 3 times before they got the IV to go. You can imagine how that went. We finally got her into the Pet Scan at 12:30 and they said it would be about 2:00 when she was done. By 3:00 I was about ready to go find her myself. At 3:30 we finally got back to her in recovery and the scan went well- she was just taking a little longer to wake up. She was groggy but, we were released and sent home.
We walked in our door around 6:30 and by 7:00 I could tell she wasn’t quite right. She was still way too lethargic, had asked for zero food, and she was burning up. We took her temp-102.7. I took the big fleece blanket and her pants off and we rechecked it 30 minutes later- still 101.9. We have to call her doctors for anything higher than 100.4 and she has to go to the closest ER for anything above 101.4. So we headed to the Athens ER and no offense to anyone that works there but- it’s not Children’s and we weren’t happy. While there, she got two more IV stick attempts and finally they just gave her an antibiotic shot because her veins just couldn’t take it. Thankfully, her blood work, ears, and urine were all clear but, we didn’t get home until 2AM.
Longest.day.ever. In total, my sweet one got stuck in some way 10 times. We were all 100% done being awake and 100% done with cancer. But, we don’t get to be done with it- she’s still sick, we’re still in this, and all of that will probably happen several times over the next 2.5 years. It sucks. We tried to still have thankful hearts. Thankful that the Pet Scan was over, thankful her fever came down quickly, thankful that we didn’t have to get transferred back to Dallas and we got to go home, and still thankful to not be at the hospital. We were thankful for all of those things but, just flat worn down from the rest of the day. I don’t have a positive spin to put on it or an inspiring quote-the whole day was terrible.
Yesterday was better but, we’re here again for more cancer stuff today. We haven’t gone to bed before midnight in 5 nights. We’ve been in Dallas 3 out of the last 7 days. It’s part of the journey-part of our new normal-we still believe God has a huge plan for our family. We still believe there will be more good than bad to come out of this. We still believe that overall Sophie is having a pretty ‘easy’ time of it. That still doesn’t dull that bad days. It doesn’t soothe the fact that- our 2 year old has cancer and she has to have a bunch of really hard things happen to her.
So when we post all of the positive things going on we praise God for that and invite everyone to praise Him too! Then when there’s a really terrible day- we aren’t going to sugar coat it and gloss it with positivity so that we seem all together- we’re going to pray for peace and grace and and ask as many people as possible to pray with us. That’s the answer to ‘How do you do it?’ It’s not anything I’m doing. My expectation of myself is usually curl up and cry-so it’s not me. It’s Jesus. Community. Partnership. More Jesus. One day at a time.
Today will be better. 🙂