Charlotte's Journey

I wrote a quick update Saturday after we got home and forgot to come back to it and post it! Then normal life back at home took over. Anyways, we are home! Had a wonderful long weekend home together! Full of fun Memorial weekend tid bits.  And Thanks so much mom (Grandma) for caring for all my babies this week. Charlotte was soooo happy and joyful to be back home. And of the 3 rounds so far, even with this C.Diff infection, she's feeling better faster and recovering quicker this round. Her check up today went well! She's able to recover at home and take her immunotherapy home meds along with the antibiotic to help clear the C.Duff infection. Overall, she's doing and feeling well! Thanks for the love and prayers and we hope to truck along for the next 2 weeks until round 4 begins. Taylor and Parker have 7 school days left until they track out for the summer.  I think I will blink and the summer will be gone. Immunotherapy will be completed. The frontline treatment will be d

We asked for a prayer and got over a dozen rainbow pictures messaged to me of one impressive rainbow in our town and over our home yesterday evening! This morning we woke to a diagnosis of C. Diff, a nasty infection causing her diarrhea, and today, belly pain. Then a few more rainbow pictures were messaged to me from some other village members who are caring for and praying for our girl.  Feeling so much love and hope I had to share them❤️🌈 When we need a rainbow but can't find one from our view at the moment...there you all are, sending us one. So, although a positive culture for C. Diff was not what we hoped, it appears the medication we started yesterday just in case is working. Things have slowed down over night. She's having some belly pain today with a fever and the team wants us to stay and monitor her for another day with the hopes we can be discharged tomorrow. So we will continue this new medication, keep her hydrated and have a restful day here in the hospital bes

The good news is on today, his 40th birthday, Brian got to wake up with Charlotte. He spent last night here while I went home. They played, snuggled, and she even napped late this morning while he laid with her which was as sweet as could be (unfortunately Benadryl is required as a premed before her Unituxin infusion and it often knocks her out). The bad news is we have another complication. Charlotte started having some sudden and uncontrollable bladder and bowel issues. She's had quite an afternoon running to the bathroom with diarrhea😞. We've needed to put her back in a diaper during the day. They've cultured and the dr said there is a possibility she's contracted C.Diff which is a nasty infection. We will know tomorrow what the cultures show. We have been put on isolation in the meantime.  We are hoping this is not the case. Her lymph node is still swollen as well. In any case, it appears she's fighting some infection. Her mood and energy has been pretty go

She woke up with a sore neck. How many simple and innocent things will afflict her over the course of her childhood and yet instantly Brian and I will think: cancer. We will always immediately fear the cancer is back. Growing pains, fever, lumps and bruises, swollen lymph nodes, paleness and fatigue, constipation, loss of appetite...all kids have these days. But when it happens to Charlotte, we will be instantly transported back to diagnosis. We will always compare her symptoms to what we understand relapse looks like. Today, we got a taste of this. And it tasted so awful. I hate this disease. Her belly had been a bit distended since round 2 ended. Granted our doctors are on it. Granted we understand why that could happen. But every day I check it. It looked so much like it did when she became suddenly so sick last March. I feel it. I fret over it a little. It goes down some but I still wonder and eye it suspiciously. Brian and I both do. We talk about it. It couldn't be the ca

Charlotte is back in the hospital this afternoon to begin Round 3 of Immunotherapy. As always, Brian and I have many mixed feelings each time we begin more treatment. We are happy to keep going and love checking off another box as DONE ✅. But, there is always that familiar pit in our stomachs that we can never escape. It's hard to begin again once you watch her acting like herself, and in recent days, feeling better then we have seen her in well over a year since before diagnosis. She's been so happy and playful and energetic. These are all good things. And who knows...maybe this round won't hit her too hard. They have told us every round is different for everyone so there is just no telling how she will respond until we are in the thick of it. With that said, we are so happy to be in this position to keep going and hitting this disease with all of our might. It's been a wonderful past couple weeks home but vacation is over. It's time to get back to work. This aft