Overall, Noah has been in good spirits. He is amazing and just so positive. I am so very thankful he is in the maintenance part of treatment and has 201 days left….but it does not get easier at all..!
Noah has had back tenderness since his Lumbar Puncture. He could not walk standing straight up for three days. Today, he slowly was able to straighten his back and walk without any tenderness.
The steroids are just horrible as always. Doesn’t help that Noah has always been sensitive to them since day 1.
Mentally he wants to play and do things but physically he is weak. He will sit and try to play legos or his building tubes and within 15 minutes he tells me he is finished and wants to lay on the sofa to rest. I know he gets frustrated…I can see it in his face.
He has insomnia and nausea.
His jaw pain is back…and that is from the Vinchristine. I have added a second gabapentin each day to help with the pain.
He has developed Mucositis (mouth sores) from the chemo on his tongue and cheeks. Thankfully, it is not severe but he still has a lot of discomfort and it prevents him from eating.
He also has been struggling with trying to find a drink that taste good to him.
He says his saliva feels slimey and tastes weird. Which is why he cannot find a drink that taste good! We have tried everything. He is force drinking to make sure he doesn’t become dehydrated.
He told me today that sometimes he feels like crying because of all the things that he has to go through…but says he doesn’t because he knows he just has to push through them. My heart breaks hearing this. He is only 7 years old and he seems so mature.
He will turn 8 years old in ten days. It blows my mind that he was only 6 years old when he was diagnosed and for the last 592 days he has been living his little life this way. For 592 days he has not celebrated anything with friends or extended family…or even had a play date.
I am hoping that he begins feeling better as the days go on into this new cycle and praying his counts stay where they need to be!!
