We had a follow up appointment at Dana Farber last week. The plan was to clarify our end of life wishes for Kai, DNR, autopsy, etc. Its kind of crazy to think you have an appointment for these things, but we did and I was dreading it.
My regular chemo night insomnia has turned into general every night insomnia lately.
I lay up all night wondering if he is okay in the other room. Wondering how this is all going to go down. Wondering what I will ever do without him.
The few nights before this appointment I kept worrying this would be the last time we went into the clinic. As much as no one ever wants to be there, Im really not ready to give that up yet either. We are safe there. We are taken care of and listened to and supported and around other people going through the same thing. When we are there all we have to worry about is Kai. Sometimes it’s harder being home and doing dishes and walking the dog and going to the grocery store. Sometimes when I am out in the real world I just want to scream ‘my baby has a brain tumor’ so people don’t have to ask or look at us funny or turn the other way. But at the clinic you dont have to scream it or explain it or make excuses. You don’t have to pretend to be able to live in the real world and sometimes that is such a relief.
But nonetheless I think every cancer mom dreams of the last day at clinic. Its supposed to be the day your baby is cured. The day you pick up and go back to the life you once had. The day you can breath again. But going into clinic this week I realized we will never have that day…I’m not really sure any of us brain tumor families ever do. This is a lifelong battle and I guess that will still be true even if Kai is no longer here to fight it.
So we went in, and I was ready. Ready to sign papers and say good bye to our friends. As ready as one can ever be for those types of things. Everyone was there, Kai’s doc. his amazing NP, his wonderful nurse and and the PACT team. They were all happy to see Kai comfortable and content. He was in a much better state than the last time they had seen him the week before.
We went over all the necessary paperwork. We talked through the DNR and autopsy process. We talked about hospice. And then when we asked what we could expect to have for time with Kai his doctor said, ‘This could take a while. Kai could live like this for months or even years.’
My heart suddenly jumped a beat. what?!? This was not the impression we got last week. I spent all week feeling like it could be any day now. I mean he was not eating and he was sleeping ALL the time. Every time I walked into his room I wondered if he’d still be breathing. I figured it would take some weeks, but MONTHS? YEARS? Not even in my wildest dreams..
And in an instant I though, We may have time? This isn’t the end? In brain tumor world time equals . Time means there is a chance for new treatments to become available. New, more effective, less toxic treatments. I let go of all of that the week before and here it is pulling me back in again….
As soon as the hope filled my body a rush of reality quickly followed. The reality that this ment there was potential for endless pain and suffering. The doctor explained in all the gory detail how Kai’s tumor could grown much larger but in a different direction, which could cause many other problems that may not be life threatening. He could lose more function, more awareness, more senses, all before loosing his ability to breath or regulate his heart. All before loosing his life. My glimmer of hope turned back into my worst nightmare. Kai could suffer, even worse than he is now, potentially for a long time.
After explaining all of this to us the doctor then ran through the scenarios where Kai could go more suddenly. Things like seizures or a brain bleed that could take him in a matter of minutes. I never thought I’d say this but I feel myself wishing for one of these, less likely scenarios for the sake of sparing Kai the frustration of feeling his body shutting down day after day, week after week. Im sure this would be more traumatic for me, but I’m just not sure I can watch him slip away for months or years.
This whole brain tumor thing has been totally unfair from the beginning, but this, prolonging this life and suffering seems like true torture.
In reality nothing has changed since last week but I feel more confused now than ever. I was in shock. A new shock. The shock of loosing Kai never leaves me, but now I had this new reality to contend with and I’m sure as soon as I can make some kind of peace with this new news something else will change and a new confusion and shock will set in all over again.
I guess all I can do is keep holding him tight and enjoying what we can. I really thought I had truly learned to let go since becoming a mom of a brain tumor baby, but becoming a mom of a dying brain tumor baby is pushing a whole new level of acceptance and living in the now.
If i let go anymore I may just float away…
Keikikai 
If you ever start to float away, please know that we will all be there to rally & catch you & hold onto you!!
Not many people in this world can even pretend to imagine what you’re going through emotionally, physically, etc., but we all want to be there for you in any way that we possibly can.
We love you & Kai & Mark so much, it hurts to know you’re hurt & there’s nothing any of us can do to erase any of it, but please know we’re here, we’re here for ALL of you.
Much love & support. XOXO
C,B,P & C
So don’t let go. There is no way you can prepare for any of this no matter how much you feel the need to. Just take each moment as it comes. If Kai is doing well, savor that moment and take advantage of it. Channel all of that fear and confusion into loving Kai. If you have the need to break down crying or screaming, do it – release it and go back to loving Kai. Know that so many of us are here for you. If you feel the need to come to clinic to be around people who understand, come in on Wednesday and visit Hail and me. Nobody would say a thing – I think they all get that you need a safe place and that is what clinic is. Call or text if you need to vent (860-803-6318). I can only imagine how scary all of this is, but know that you are surrounded by so much love too. Sending hugs, hope, light and love, Lisa
Kerr – just read your last 3 posts all at once. It’s amazing how much things change in just a matter of a few days — as you said nothing has REALLY changed with Kai, what’s changed is how this is perceived by you and I’m sure its impossible not to hang onto every word from the doc. I agree so much with the other Lisa – no matter what happens, you will not be completely prepared for what’s to come. I’m sure all you want to do is prepare, but at the end of the day it’s best to just take each moment as it comes. Preparation leads to expectations – and expectations always lead to disappointment – this is true in all facets of life but I think it rings true with you two right now as well. You continue to amaze me every single day. You and Kai are connected on a level much more intense than just a mother and her child – you have something deeper than that and as always, only you know what is best for him. xoxox
Keep holding on, to hope, to Kai, hold him close, sleep with him, relish in his good moments. Enjoy every second of every moment with your sweet Kai. Continue writing to him, go to clinic, surround yourself with in-person support. I am so sorry Kerri. Lifting you both in prayer, Melissa
Kerri, I think about you and Kai often. My heart is broken for you and all you are having to go through. You are such a good Mommy to that sweet boy. Love to you and your family as you go through this.
Kerri, I believe God has a plan and it doesn’t include making you or Kai suffer. Kai is a teacher, and for what ever reason he is not done teaching us. We have more to learn from him. I also believe no matter what the doctors say that you feel far more pain than Kai. There is no pill that you can take. I pray that strength will be given to you, Mark and Kai. Your ability to write and express your feelings is a gift Kerri. I believe other parents who are going through the same thing have been lifted through your words. You should never stop writing. You and Kai are a great team that nothing will ever separate.
Kerri, I don’t know what to say, I wish I could give you some comfort. I wish I could have gone to Sherry’s house the other day to be there for you. Soak him up take him and expect that things will somehow be OK. Not the OK we want but somehow OK, that he won’t suffer. I don’t know… I think it helps me to expect the best. I have to tell you I love Kai’s “B is for Bob” shirt. That made me smile, I almost got Tommy that shirt a few months ago. I think about you all the time and I pray for comfort and good days with your sweet boy.
Kerri, somehow I only just found your page…
my heart is so full for you and your beautiful boy. Sending love and hope for moments of peace with your sweetie. Just holding you in my heart…I have no words at all. If I could I would launch a flotilla of wish boats for Kai and you and all our kids…
peace,
Kristin, Genna’s mom
Kerri I am just sick! I just found your page and obviously I am so far behind on what has been happening with Kai. I just sobbed when I read your last post. I have know words, my heart is broken for you. I am here if you need to talk, vent, cry, yell, scream. Call me any time…..if you need my number, just FB message me. ❤ you….
I am a friend of Lisa Giguere’s. She talks about Kai all the time. My duaghter is a bt survivor but we live in Michigan. We are praying for your boy and family and send our love….
All these wise folks before me said all the right things…hold him, hug him , talk to him, what else is there to do???
Savor every precious minute…as if this would be helpful, as if you haven’t already thought of it all…
You are wise beyond any wisdom I could offer, but know I am offering so much prayer for you for Kai for peace for both of you, whatever that means….
Love you both….
Alice, Lexie’s mom
I am so sorry. What you are writing makes me want to swear because life can be so painful. Just a couple of days ago I watched videos of my son, and they made me cry because I could see even on his best days that he suffered, and it made me think that maybe we kept him alive too long. All of a sudden I felt so thankful to him that he stayed with us so long.
I am sorry to hear about your son. I hope you do not question the decisions you made while he was here. We all make the best decision that we can that day, everyday. There are somedays I make decisions selfishly and other days I am able to look past myself and do what I think is best for Kai, no matter how painful it may be. Either way, each day the decision was the right one.
I can not yet imagine the questions you must live with looking back, but i am sure you did the very best for your son, as we all do. My thoughts are with you.
I want to thank you all for your thoughts and words. I don’t reply to the comments often but please know I read and savor every one of them.
I especially want to thank my fellow BT moms. I can not imagine reading these things and keeping up with all of our ups and downs when you all have your own daily fight to contend with. It really shows how we are all in this together. I too think about your kids and families on a daily basis and that will never stop. I am so thankful we have been connected. Xoxox
Kerri, I don’t know if you remember me; I’m Ann that met you at MoCo and told you about Dr Karen. I’ve been thinking about you and Kai often wondering how he is doing. Jeanette told me about your blog and I am just catching up. I still can’t believe that it turned out to be a tumor. No mom should ever have to experience what you are going through. I am truly amazed what a strong mom you are.
Sending my best to you and your little guy.
Love,
Ann (and Sofia)