30 weeks down. 30 more to go…

Last week was Kai’s 30th chemo treatment, marking the half way point of his protocol.

30 down, 30 more to go.

It is hard to believe that we have been doing this for 8 months! I stopped keeping track a while ago and this half way mark kind of snuck up on me.

I dont know how i really feel about it right now. We are half way done, but we still have a long way to go. And if there is one thing i have learned along the way, it’s that we will never really be done.. Chemo and tumors, MRI’s, therapy, this is all a part of our life from now on.

Thinking back to diagnosis 9 months ago, so much is a blur to me now.

As you can imagine the moment you hear those words, ” we found a mass in his brain” your world stops. For me there was a certian amount of numbness that took over, shock I guess. It is hard to come out of that and I’m not sure you ever fully do. No matter how much I try, it is still hard catch back up with the world everyone else is living in.

I no longer live in that world.

We have our own little world we live in for now. A world lived in survival mode. With no time to pause, no need to make plans, no space to dream. As cliche as it sounds, it truly is the fight for your life everyday.

This fight has changed every relationship. It has challenged every thought in my mind. It has rearranged every hope, dream, goal.

My advice to others finding themselves starting this journey, take time to morn this change because it is profound. It is hard. It is loss, no matter what the outcome. It is scary and sad and can be lonely at times..

but… it is also true what they say, there comes a day where this crazy world becomes your new normal. It’s hard to remember a life without all of the doctors and therapies and appointments.

And some how it does get just a little bit easier.

We have made some great friends along the way and the bonds you form inside hospital walls are like no other.

8 more months of tumor and chemo is only one part of this battle for us. We are slowly adapting to the many disabilities and struggles Kai has and is likely to face in the future. It is a hard realization sometimes, but with the support and expertise of all of Kai’s therapsts, the adivce and experience of the new friends we have made, and of course the support and understanding of our friends and family, we are hopful for all that Kai will be!

And I’ll say it again, he sure is cute which always keeps us smiling!

I am thankful for the good days but am prepared for the hard days I am sure we have yet to face.

This week we are enjoying our time off. We have plans with friends, a meeting with a new acupuncturist, all of the usual therapies, and hopfully some quiet time in the sun. I hear its supposed to be in the 60’s this week!


9 thoughts on “30 weeks down. 30 more to go…

  1. I’m praying for strength for each of you. May God bless you in your struggles. And I agree with you that he is one beautiful child!

  2. Hi Kerry, You couldn’t put it in better words. As I read your note, i was speechless. I saw my now life described before me. But you know, it is true, this becomes our “normal”. Some days are fine and we’ve accepted the changes. And yes, there are days in which we feel we are about to shatter in a billion pieces. But we get courage from somewhere for our little boys. Thanks for writing this. (Cyber hugs).

    Love and blessings,

  3. you’re right, enjoy the good days & be blessed to have all of them. you certainly can’t argue w/how damn cute he is!!!!!!!!!! look at that face, i want to grab it right off the page!!

  4. God had millions of moms and dads to choose from to be parents to Kai. He chose the two of you Kerri and Mark. He chose you for your strength, your courage, but mostly your love. Kai is destined to bring great things to this world. Just you wait and see. Don’t lose faith or hope.

  5. Hang in there Kerri, Mark & especially Kai – you ALL are in my prayers!

    You guys continue to inspire me with your courage – keep up the fight!
    Love, Mark

  6. Kerri,

    You are remarkable. I love you so much and wish that life could be kinder to you, but remember that, with all of his problems, Kai is still a gift to you and to all who are a part of you. We are with you all the way in the best way we can and always remember that you are not alone.

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