Wednesday, June 1, 2011

Courage

Taylor ballons

I’ve finally found the courage to write this entry.  I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia.  While this type of cancer is more common in older adults, it can happen at any age.  The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy.  The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that.  I follow the blogs of some DS children being treated for leukemia.  However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy.  I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic.  He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors.  I want whatever time Taylor has left to be happy.  All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research  that went into the decision that we made.  Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that. 

I know in my heart that we’ve made the right decision and the best decision for Taylor.  Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me.  But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing.  I would ask those people to keep in mind that they don’t know Taylor’s medical history.  They need to understand that the decision we’ve made is made with the love we have for Taylor.  I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable.  Taylor is surrounded by the people and things that make her happy & fulfilled.  She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV .  Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.

 

22 comments:

lisa said...

This makes me sad to hear this diagnosis for sweet Taylor :( I totally back you up on your decision..it's not that quantity of life but the quality of life.I know you only want the best for her and know you will do your best to provide that for her. Your family our in my thoughts and prayers.

Becca said...

Crying here...I feel like I have gotten to know you and Taylor through your blog, and definitely love Miss Taylor from afar. I know your decision did not come lightly, and I know exactly why you have chosen this path and understand it well, given what I know of Taylor's health, both now and in the past. I am so sorry you are all having to go through this. I can't imagine, nor do I ever *want* to imagine, how it feels, and my heart goes out to all of you. I think of you often... Please give your girl a BIG hug and kiss from me, and please accept one for yourself, as well. :-)

MY LIFE WITH BOYS! said...

I'm sorry to hear of this diagnosis. I also fully understand your reasoning. Will keep your daughter in my prayers!

Jamie said...

I too have followed you for some time since both of our girls have seizures..remembering Taylors obsessive can removing from your cabinets and smiling to myself. I am blown away by this...I will keep Taylor in my good thoughts and Prayers..No way will I Judge you for your choice...We are the moms of special girls and we know whats best for them..xoxooxoxo

Kathy said...

What difficult news. I'm sorry that you are going through this and pray for much comfort and joy for Taylor. I totally understand choosing the path of least suffering for your dear girl.

Jill said...

So sorry to hear about Taylor's diagnosis. I've never been in your shoes, but understand the reasons for your decision. I hope Taylor continues to be comfortable and happy for as long as possible.

MoonDog said...

wow! that must have been an incredibly difficult and painful decision! I wish you peace in your time left with her. and peace in the time after to not question your decisions. Im so sorry to hear about her diagnosis. much peace and love to you.

serenaserene said...

I support you in this difficult decision. Taylor is in our thoughts and prayers.

Sue and Eric, Taylor's boyfriend

Lisa, aka AP said...

Dawn, I don't have the words to tell you how very sorry I am you've received this news about Taylor. I can, however, tell you I'm behind you 100% in the decisions you've made and think you are doing the right thing. You *are a beautiful, strong and courageous mom and that is echoed in Taylor. Just enjoy her and enjoy life...not a one of us is even guaranteed the next minute. {{{you}}}

Erin said...

I am so sorry for the news, but think you are such a good Mama. She is a lucky girl to have you and her family.

The Original RiM said...

Dawn -- ((Hugs))) to you and yours. I truly believe, from all I know of you, that you and your family are making the only decision that is appropriate and best for your family. Those who say otherwise are wrong. My thoughts and prayers are with you.

Robin (in Montana)

Kathy said...

Dawn,

I've known you and Taylor from a far for many years now. You have made the right decision; I understand that it must have torn you to pieces to do it.

Life is indeed many times quality and not quantity. You have always told me that Taylor is the closest thing to God's love on this planet that you could ever imagine. Out of your unselfish love, your family has chosen what is best for for your Tay, Tay.

My heart, prayers and hugs are with you and your whole family, especially with Taylor. Also, your right about Taylor just might be stubborn enough to out live all of you. **smiles**

BIG HUGS, <3
kathleen

Trudy said...

Dawn. Oh how my heart hurts for you. As i sit here with tears running down my face all i can say is i'm so sorry. I lost my father in law to AML a few years ago and I wish he would of taken the few month he had and enjoyed it. instead he was in the hospital for all but 3 days of the 3 months he had left. Don't worry what others think you are her mom and you are doing the right thing. Make everyday she has left count, not just for her but for you. Hugs

Heather said...

I'm so very sorry to hear about Taylor's diagnosis. As if she's not been through enough already.

I was diagnosed with a blood cancer in 2007. I hate that disease so very much. I know your decision had to be a hard one, but the right one for Taylor. If it were lymphoma like I had, I would say seek treatment.

But leukemia is a whole other thing. The treatments are longer lasting and draining.

I would definitely suggest that you talk to Taylor's doctors about two things...a transplant either stem cell (using Taylor's or another person who matches) or bone marrow. It does involve chemo or radiation, which would essentially wipe out Taylor's immunity and cancer, while the new non-cancerous cells grow into a new immune system. It would be hard but not as long lasting as traditional treatment and would possibly lead to a cure. I will say that while treatment is hard, there are many options to help relieve the symptoms.

I understand if that is not a path you want to pursue. But I wanted to mention it as a sort of by-pass of traditional lengthy treatments.

If that's not for Taylor, then my other suggestion is palliative care. Essentially making sure that Taylor is always as comfortable as possible. The doctor can manage her case or hospice (hospice no longer always has a life expectancy "time limit").

I hope that something, anything that any of us can offer will be of help. And there are many, many specialists out there who can manage care from long distance with computers, faxes, etc. A lot of options if you decide that's a possibility.

Again, I'm so sorry. My heart just dropped reading this. I want to give Taylor a big hug (and you too). Not only have I been through this awful disease, but both my husband and I are nurses, he specializes in hospice/palliative care. If you have any questions or we can help in any way please email me at: hyoung(at)gmail(dot)com

Lots of love to you all.

Robyn said...

I'm not a very good commenter but you are one of the mama's that I admire most. I've always been drawn in by your honesty of what life truly is like for a family with a child like Taylor. This post just cements you in my mind as one of the bravest women I know. Taylor will know her days were filled with love and peace and Diet Coke. If we all could be so lucky. You family is in my thoughts and prayers always. Much love to you all.

Lisa, aka AP said...

Just peeking in to let you know y'all are always in my thoughts and prayers. I hope your home is being filled with much peace, love and a lot of Barney right now. Hugs to you, my friend...I wish I could offer you more.

ellen charge said...

sending you many many hugs in this time i know what its is to beat the odds i have done that many times i know what ist is to watch others beat the odds i allways read blogs and see it pls just keep us all updated on how u r all doing and most of all enjoy what time you have with her love to you from an aussie charger

JEllen said...

Just reading this today. How shocking this news must have been to you. Being a parent of young adult who has been through a lifetime of medical hurdles, we so understand your decision. A happy life is so important. I trust you are enjoying every waking moment and relishing in your time together. I will be thinking of you daily.

Jamie said...

just checkin in on you..hope you are staying strong. No new blogs lately but really...no pressure :)

ANewKindOfPerfect said...

I just now am sitting down to catch up on blogs and I am so sad to hear the diagnosis Taylor has gotten. It has been clear from the day I first read your blog that your love for Taylor is immense. I know you are making the best decision for her, and your family. I pray that she proves the diagnosis wrong, and has plenty of time left for Diet Coke.

Dotty said...

I'm so sorry to hear the news, heartbreaking! Your decision is a hard one no one should have to make, I'm sorry you had to, you know her best, you have her best interest at heart and shouldn't be judged for that. God bless you! Many many hugs to your family

Rachael A. said...

Even though you don't know me or that I occassionally stalk your blog I just want to say that I am sorry for your bad news but that I support your decision 100%. I feel like no one understand the decision to not intervene like another parent who has chosen the same path.

I just want you to know that a complete stranger supports you and gets it (to some extent at least).

Much love from Indiana.