Hey friends!! Itās been a minute since we sent out an update. Which is great because that means weāve had a few weeks away from the hospital! šš¼
Last week we had an appointment with our oncologist – they drew labs and talked through our plan moving forward. Molly Margaretās labs looked good overall – a few levels are still coming up recovering from chemo but overall weāre in a good place. We will go back in a month for labs and another follow up appointment. Weāll have our first routine scans at the end of May. These scans will be every three months for the first year and then start to spread out. It was a rather uneventful appointment which we were thrilled about! We are officially at the point where we can say we are done with cancer treatment – wow. Praise God! To symbolize that, Molly Margaret got to ring the bell today at the hospital!!! It was so sweet to have so many nurses and doctors who have walked beside us there celebrating this huge milestone with us! Such a celebration!! Hearing others before us ring the bell always gave us so much hope. We can hardly believe today it was our turn. We are so thankful to close this chapter. ā¤ļø
On the OMS front we are continuing forward with our treatments every four weeks. Doctors are very pleased with where we are and how MMās body is responding to these treatments. This week we are having treatment today, tomorrow and Wednesday. This is our last month on this steroid regimen (!!), next month will be our first month to start slowly weaning over the course of the next six months. IVIG will continue on at this frequency for another year and a half at least before the weaning process begins. The rate of relapse is very high for OMS so the treatment plan is long and weaning is slow. We are so thankful to have the cancer treatment off of our plate now so we can focus solely on this! We continue to pray that Molly Margaretās body responds well and we see no signs of relapse. Please pray with us this week that infusions would be smooth and side effects minimal. As weāve mentioned before, high dose steroids are a real bear! And unfortunately, Molly Margaret is becoming increasingly irritated with the hospital (canāt blame her!) so it can be a challenge getting through infusions. Just getting a blood pressure today was almost impossible. Once again, we were reminded at how amazing the staff at Duke is – their compassion, patience and kindness never ceases to amaze Neal and I. Some of the most incredible humans weāve ever met!
Weāre so humbled by your continual prayers over our family. After several months, we finally feel like weāre catching our breath a little bit and are *starting* to catch up on the last six months of life stuff. š I (Mackenzie) broke down last week over something seemingly insignificant. Then it hit me and I told mom āI think Iām upset because this is just a reminder to me that nobody gets it. Nobody understands what weāve been through and are still going through.ā Which is true. But then I read something and realized – they donāt have to get it. Because God does. He understands exactly what weāve walked through and what weāre experiencing. He understands exactly the fears and anxiety Molly Margaret feels at the hospital (which even Neal and I canāt possibly fully understand). And He meets us in it. Relationship with God is so personal. Itās intimate. So no, a lot of people donāt āget it.ā Just like I ādonāt getā lots of different things people I love have walked through that I havenāt. And thatās okay. I donāt have to explain away or defend or prove why I feel a certain way or am triggered by something random or the trauma weāve walked through. People will get it or they wonāt and thatās okay. God does and thatās all we need. Oh man, Heās so kind to us. The fact that He meets us in our humanness and holds us so tenderly is such a gift. Friends, if you donāt know Him like that, meet Him. You have the opportunity to have an intimate personal relationship with the creator of the universe. DANG, if thatās not some good news!!! Iāve cried to Him, yelled at Him, praised Him and pleaded with Him more times than I can count over the last several months. And Heās only drawn me in closer. Man, I never wanna know life without Jesus. š¤
- Neal, Mackenzie and Molly MargaretĀ š



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