A new meaning to chemo

The past 2 weeks Jack has received increased amounts and added chemo drugs in hopes to decrease his IgG antibodies that have plateaued. The regimen has really been difficult on his body and mom’s heart. Jack has been experiencing a whole new level of side effects…vomiting, to anxiety, to combative anger, and sadness. It’s really quite awful to watch. Im missing my little pirate attacking with swords and loud “arghs” which now is replaced with a sick little boy on the couch sad, mad, and tired. When he looks at me and his eyes ask “why?” I rub his back and remind him and me that he is a superhero, God’s superhero here on earth attacking monsters. Reminding him how he can now walk with help up stairs, how he runs around the house without coughing and out of breath, how he can go to school without joint pain that makes him sit the entire time,… We know this course is the best, we know its temporary. We pray and ask for your prayers that the next round of labs (in 2 weeks) will show positive results from this heavy, intense course were on. Until those labs come back I’m counting down the minutes till Saturday when his body gets a break.

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One thought on “A new meaning to chemo

  1. This makes me very teary and all choked up. You are amazing as is Jack. I can’t even imagine how your heart must hurt at times. You and your family have and continue to sacrifice so much to do all that you can to help Jack. He is one lucky little man. We have watched Jarrett fight us/cry every week when we infuse him and made the decision some time back, that what we are doing now is all we will do. He however, is older than Jack and the damage to his little body is irreversible. He will never live a pain free life. We want him as happy and comfortable as possible for however long we are blessed with him. Every family in our situations make decisions based on different circumstances, different beliefs, different experiences. We won’t all make the same decisions, but must continue to support/love each other throught it all. Tough decisions we families of MPS must make. But no matter what, we have seen and learned things that other families may never experience! Many good and wonderful things! I think of you often, feel your pain, and support and respect you and your family more than you will ever know. Give Jack a great big hug from the state of Kansas! We LOVE Jack……

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