We are almost half way through radiation! Our final session will be on April 11th. Mac continues to amaze me. He is not really drinking or eating enough so we have been going to the clinic before radiation for hydration. Today he got hydrated, sedated, had radiation, returned to clinic to finish hydration, got chemo and then returned home. I thought he would nap since it was a very long and busy day, but instead he went out to play ball and ride his bike with Liam. I thank God everyday for giving Mac not only the strength to get though his days but to exceed our expectations. He had yet to complain about anything. Although with the new type of dressing on his central line I have to wrap almost his whole upper body in Glad press 'n seal before his baths which he did say he "wished he didn't have to do". He is scheduled to be home the rest of this week and next. I talked to his nurse today and hopefully he will be admitted the following Monday instead of the scheduled Wednesday. He will be in for at least 6 days the first week of April and we are hoping we will be home that Saturday in time to celebrate Easter at home!
Mac's hair is thinning quickly. I have mixed emotions about this. I have no doubt he will be as handsome as ever, but have a real fear about him being bald. Not because of what he will look like but because everyone will know he is a child battling cancer. Up to this point we have been able to go out and pretend we are a "normal" family. The whole world will now be aware of our "new normal" life that revolves around medication checklists, flushing of central lines, and our constant reminders for Mac to drink something. To many this may not seem like a big deal, but it was my oasis. My time away from hospitals and my home with the constant reminders of this horrific disease.
Each day brings another step on this journey we never wanted to travel but could not have asked for more supportive family and friends to walk with. Thank you all for standing by us and continuing to pray for Mac. We could not ask for more than to have our good days outnumber the bad ones and that is exactly what God has given us so far!
I feel so cheesy writing the same type of messages all the time, yet, the same things keep coming to me.
ReplyDeleteYou guys are amazing. I read these notes with tears in my eyes because people that I care for so deeply are going through such terrible times. But the tears are also coming from the the happiest place in my heart because through all of this, you always have something positive to mention. It's heartwarming because it comes at a time where no one would question it, if you just wanted to shake your fists and have a pity party!
I love you all so much and hope that you know you are on my mind each and every day and I'm there in a second if you need anything!
So happy that Mac will be home with some nice weather!
Becky, thank you so much for continuing to share this journey. In the midst of devastation, you always share moments of light. I'm so glad that the light is winning. Prayers continue daily.
ReplyDeleteMac is one strong and amazing little boy! And very lucky to have such a great brother in Liam...and of course, Mom and Dad too! It must be so difficult to stay strong at times, but to see Mac's strength must be so inspiring. You all remain in our thoughts and prayers daily. :) Denise, Lexi and Sam
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