Where has the year gone is what I would like to know. I remember like it was yesterday: a year ago, finally settling in with Titus at Children’s Mercy, me, 20 weeks pregnant, snuggling my sweet boy to sleep in the hospital bed. He was so good, even then when it was all new and scary and ouchie, we didn’t know what tomorrow would bring and sure weren’t expecting what it did bring. When the doctors sat down with us after he had a bone marrow biopsy the evening of March 1st and said “we found something we weren’t expecting” we began this long fight. Through tears and heartache we learned the plan to save our boy’s life, and we started this journey, a journey no parent ever expects to begin.
Tomorrow is March 1st, I know it is just like any other day, however, it marks a year that we have made it through with Titus and his fight against leukemia. It marks a year of chemotherapy, a year of overcoming daily fears and struggles. This is a big deal to me. I don’t expect anyone else to really remember this date, I won’t hold it against you. But it will always strike a chord with me, make me remember my heartache and my son’s fighting spirit. Most days at certain points I am able to forget that my child is fighting cancer, until of course it is bedtime and chemo time. I pray that when Titus gets older he won’t have these fears that I have now, that he will be able to forget many of the yucky things he’s gone through and be a normal kid. But what is normal really… Right now his normal is walking around with a port in his chest, getting his “applesauce” medicine every night, tiring easily, being quarantined at times for fear of infection, being poked at least every month (thank goodness the weekly pokes are over for the most part), wearing a mask to keep out the germs, wearing hand sanitizer wherever he goes, mommy yelling to calm down and not to play too rough…Yes, this is normal for now; maybe someday we will have a different normal.
Many of you who read my updates are close family and friends – your support over this past year has meant more than you will know. At many times I have felt undeserving of your love and support, but thank you all the same for your support of my family and especially Titus. With your help my father was able to see his dream come to fruition of blessing our family with more space in our home. We are finally able to enjoy that extra space and it is truly a blessing. When things have gotten tight over this last year, we’ve trusted and prayed that God would continue to provide because HE knows what we need and He has done just that – through you all! While we have reached the year mark, we still have almost two and a half years to go – this isn’t a sprint, it is a marathon…and I am tired.
An update on Titus’ health: He has been sick off and on since right before Christmas. First it was a small cold/cough which turned into pneumonia the week after Christmas Then the week after new years he was admitted and tested positive for RSV. He went on a chemo hold for two weeks for low counts. He had his routine lumbar puncture rescheduled due to his nasty cough last month. Tomorrow he is scheduled for that lumbar puncture, however his cough is back so we will see what they say after his exam – we shall see what tomorrow holds ( I will post an update on his facebook page ‘Titus Beeler’s Healing Journey’).
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.
