Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
This is my go to verse – I remember singing a song based on this verse when I was small, little did I know how big of an impact and how much peace it would bring to me now. It is hard to be strong and courageous all the time. Strength can be tiring! Who better to have in the driver seat of life than God! He is where I find my strength. Even on days where I feel like a failure and like our world is falling apart around us, God is with us. I spend a lot of time being afraid for Titus (for all my children) for his future, will he have a future? Fear is not healthy! Fear paralyzes you, makes living every day to the fullest impossible. Joshua 1:9 says to not be afraid! Whether you are facing a cancer diagnosis like Josh did, and like Titus is now, or something else, we must not let fear take control.
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Merry Christmas! (a little late) P.S. I need to update more often, sorry for the book you are about to read!
I want to say a huge thank you to everyone who participated in our Christmas Gala! So much fun was had by all and we are so blessed that you took the time to join us and support Titus and our family!
For Christmas this year we had planned to just stay in KC. However, Josh ended up being able to get vacation time and so we decided that we wanted to surprise Titus’ grandparents for Christmas (Josh’s parents). We began planning at the beginning of December our surprise
We drove over two days to get to their home in East Tennessee where we then put Titus and his big sister Aubriana in a big box that was wrapped and waited for them to get home from lunch. Needless to say, they were very surprised! We enjoyed being able to spend Christmas with them and are so glad that God helped us get here through the help of family and friends and my sweet sister in law who was our accomplice! This trip was a nice vacation away from the stresses that are our norm. It gave us time to relax and snuggle with our kids and play and not worry about anything else, it was a true blessing.
We spent an afternoon the week of Christmas in the local East Tennessee Children’s hospital with Titus because he had spiked a fever. Because of his immune system being compromised this is the protocol for when his temp is above 101.5. His ANC was above 500 so he got IV fluids, and a dose of IV antibiotics – Xray showed a small infiltrate on his right upper lobe (small amount of pneumonia). He was put on antibiotics for the next week and sent home.The hospital staff were all very accommodating and helped to ease his fears while in an unfamiliar setting. While Titus is used to having his port accessed, it is stressful (the older and more aware he gets the harder it is). The nurses all mentioned how adorable he was and how calm and cooperative he was. The nurse that deaccessed his port says that he dreads doing it because the kids normally pitch a fit and hate it, but that Titus was the first little one that he’s seen be so calm about the whole thing. It makes me so proud when others see what I see in my son – A calm, trusting, loving spirit.
We left Tennessee Sunday, January 6th around lunchtime and got home that night/Monday morning around 1:30am. We came home to a wonderful surprise! Titus new bedroom (Aubri’s old room) Was painted with a wonderful Batman city-scape mural on the wall (complements of uncle Marshall with creative assistance from Grandma) Along with his room, the mudding and painting was completed in the basement! We are now very close to being able to move everyone around! Once we get flooring installed and the bathroom tiled, Josh and I will move downstairs and we are so excited! Because of this remodel, Titus is now able to have a large bedroom with plenty of play space all his own! His previous bedroom will then house his baby sister Aurora who is looking forward to finally sleeping in a nice comfy crib and not the small pack and play bassinet in my room that is almost too small! She is growing so fast! Aubriana will also have a nice more grown up space in Josh’s and my (old) room. I have to say a huge thank you to everyone who helped my family get our home more comfortable and a much safer place for Titus.
Well, after being home from our trip less than 24 hours, I had to take Titus to the ER because he had spiked a fever. While in the ER he got a chest xray which was clear! However, his ANC count was below 500 (330) which along with a fever is an automatic 48 hour stay. They drew blood cultures to look for a bacterial infection and did a viral panel – He was put on IV fluids and routine IV antibiotics. On Tuesday the viral panel came back positive for RSV, Yuck! For children Titus’ age, RSV normally leads to cold like symptoms, but it can be dangerous in babies, and yes, you guessed it, people with compromised immune systems like our sweet boy. Besides fevers and a nasty cough, he didn’t have any breathing or other issues which was a huge blessing. On Wednesday he received an IVIG infusion (this is a blood product, a protein found in the blood plasma which plays a role in the immune system, Titus’ was very low). Then because he was stable, his oncologist sent him home Wednesday evening. His platelet count was low at 38,000 and his hemoglobin was very low at 7.1, however he is not extremely symptomatic so his Onc wants to check his labs again this coming Wednesday. Titus’ Dr. would rather try to let his body recover on its own. Titus is currently on a chemotherapy hold because his ANC is below 750 – being on a chemo hold will hopefully also allow his hemoglobin and platelets to recover without being transfused.
Thank you to everyone who has been praying for Titus and the rest of us this week, and throughout everything! Please continue to pray that his body can recover quickly, and also for the rest of us who seem to be fighting sickness as well. I will update after his lab work on Wednesday, pray that his counts have improved enough to not need a transfusion!
**If you are unfamiliar with blood counts etc, read my previous blogs “blood counts” for a little more info
