It's always at the back of your mind. Is he too pale and in need of a transfusion? Is he crying because his sister hurt his feelings or because he is feeling sick? Is it time for his medications? There is always a reminder.
Such as the line of medications which he takes daily. Some of these are once daily, some twice, some need to be administered three times a day. One needs to be given twice daily on Monday, Tuesday, and Wednesday. The injection needs to be given when his ANC reaches below 500 and given until it reaches 10,000. Some need to be given with food, others on an empty stomach, some not within a few hours of each other. Some days I feel as though my whole day revolves around medicine.
He has a whole host of other medications that he takes on an as needed basis. Luckily, we don't need to give those as often.
Then there is his dual hickman line. It needs to be hep locked daily (the two blue syringes in the picture). Twice weekly we need his blood counts so I need the whole pile of supplies shown below in order to draw his blood.
There is also a dressing change that needs to be done weekly to keep the area where the hickman line runs into his chest clean and sterile. That involves peeling off the old dressing, donning sterile gloves, swabbing the area with alcohol, repositioning the line in a loop, and putting a sterile dressing back on. We need to cover it when he takes a shower or bath to keep it dry.There is a host of other issues that need to be dealt with as well. The odd thing is that while it dictates a lot of our day, it's become normal for us. It's just another thing that needs to be done during the day. Jacob takes his medicine like a champ, holds out his arm for the injection, and sits still for his line to be flushed or his dressing to be changed. I'm able to keep all the medicines straight without a chart and know what time he needs what and when he last had this or that. And because it is now normal to us, every once in awhile I'm almost able to forget that it isn't normal .
Oh wow I remember those days!. My nephew was diagnosed with leukemia when he was 18 months old and spent almost 4 years on chemo. He was practically living with us at the time, so I often did his dressing changes (his were daily) and flushing his lines. I was always amazed when I watched him get his bone marrow drawn, at how he just sat there and didn't even wince (at the tender age of 2 or 3). My nephew will turn 10 in a few months. One day this cancer will become a distant memory as you watch your precious son grow into an amazing young man, and the character that he's showing now as he takes it all in stride will stay with him forever. These trials grow young kids in such an amazing way, where they don't come out on the other side of cancer for the worse, but better than you could ever imagine!
ReplyDeleteI'm praying for sweet Jacob, and your family.
I remember living in that world with my husband for 17 years - our normal was never like anyone elses but my sons and I would never be the people we are today without those trials. Hang in there you all will be have such skills and strength through this all.
ReplyDeleteJust found this post. Have been praying for Jacob and the family. I think for all of us "normal" is a relative term.
ReplyDeleteMy son was diagnosed with Leukemia in January and your post describes so well what it's like. I sometimes forget how much more is incorporated into our day now - until someone comes to visit. :P
ReplyDeleteGood luck to you and your son!