I can't seem to stop thinking about Saoirse's last moments. The gasping for air, the weezing I could hear in her chest when she took breaths. She was on a Cpap machine that was assisting her breathing, but she was doing most of it herself. She just wanted to sleep. She kept signing "sleep". it took a lot of energy for her to do this. I am trying to catch the moment she died. did she feel pain. was she dreaming. did she feel rest. panic. ? lights? dark? I keep seeing her little body pump up and down on the bed while they were doing CPR. I wish i had not looked. there was nothing i could do to help. nothing. she just couldn't keep up anymore. she just couldn't do it. she was so tired. it kills me that I couldn't take the pain away. what was she thinking while she was in pain, struggling to breath, chest pains while i was standing there humming to her, telling her she is strong and i am sorry and telling her i love her. was she thinking "why isn't daddy making it better?".
deep breath.
her little body was so swollen. her feet, legs hips. when i asked her where it hurts, she pointed and grabbed at the lower right side of her body by her kidneys. she couldn't pee anymore. her pee was so saturated with salt and bi products from meds and liver breakdown from the radiation. she was so thirsty. her tears turned to salt instantly. i know she had way too much salt. i know this was a result of mis communication. her massive salt supplements should have been stopped days before. or managed better. i am blaming myself for not catching this sooner. i caught it the night before she died. her salt levels were hovering around 150ish. i am so angry. radiation doctors were telling us they believe the radiation was working.
deep breath. i was in such agony because i could not make the pain go away. i am still in agony.
I am so sorry you had to witness your little baby go through all of that. I witnessed my mother pass away thinking with each breath (they were so far apart) is it her last and when it was nothing could of prepared me for it. I went through anxiety for a while each time the images appeared out of nowhere. I am sure it is so much worse when it is your own child. I wish there was something I could do for you both. I pray that with time you find more and more comfort and peace. (((HUGS)))
ReplyDeleteI am sitting next to my 5yr old daughter and my 18mo/ old daughter is handing me pretend food. As I read this I cry, again, for you. Wow, I am so sorry you guys had to watch her suffer like that and I am so damn sorry she hurt so bad. I just don't understand why any baby or any child for that matter has to suffer. I am very conflicted religiously becuase of this kind of thing. You are very strong , especially for even being so open about that. I hope it helps you.
ReplyDeleteI think I mentioned this before but I will write it again---- my friend who WAS (needed a break from that) a pediatric nurse in the the Strong cancer center told me that when babies or young children pass that they really seem to know what is happening and no matter how many times she watched this it was harder on the adults than on the child. I suspect Saiorse knew what was happening and wanted permission from you guys to "sleep" and I would bet money on it she felt instant comfort and peace when you made eye contact with her and said it was ok. Her little body just couldn't take that any more. Hell, I don't think an adult could deal with that. Try to find comfort in the fact that she is not suffering any more --I know, easier said than done --I would be a mess but it sounds to me like she really was hurting and it could have gotten worse--you can't blame yourself for her what was happening. Think of how much time you bought with her because of your education and awareness. I really think years for us are minutes in heaven and when she sees you again it will be like 10 min in her would. You will have more kids and jobs and happy days and sad but she will always be with you and in your hearts. She will be your future kids guardian angel and she will protect all of you. It will take you guys a long time to heal. Hang in there.
Seeing the last moment of her life went gone in front of you and Kezia is not very easy to forgot. I can imagine that. I surely hope she might felt the pain for few seconds, not minutes if there were. Or maybe she did not feel any pains because there were none or she was "out of body" while passing out that she did not feel pains. I think maybe her body gave up because she was so tiny and her organs might could not handle with all of radiation, and other things despite what doctors said or suggested. Only she wanted to do, was to go to sleep. She felt so tired.
ReplyDeleteI believe she knew you two were there for her and wanted to help her badly. She thanked you two for being there for her all the time out and inside of the hospital and at home. She loved you two and Fallon so much. Remember she is still around you all. Sending healing thoughts and prayer.
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ReplyDeleteIn addition, I read your and Kezia's blogs and they often make me cry. I feel the emotions as you both write. Other people are feeling that as well.
ReplyDeleteI can't even begin to imagine what it must have been like to watch your baby die. I'm so very sorry. I hope that in time you begin to find peace and that the hard days are fewer and further between. Your sweet little girl has had a tremendous impact on so many people, she will forever be remembered. I think about you and your wife often, Mike, I hope nothing but the best for both of you. Thank you for sharing so much with all of us.
ReplyDeleteplease do not blame yourself, you did everything you could have done. she had a diffusely metastatic cancer, multiorgan failure. nobody can save anyone with this. I'm sure she was on pain medication, so she must not have felt pain. it's heart braking for a parent to go through this, but to feel guilty about not doing enough is worse. you loved and fought for your baby more than many people ever do for their children. you did everything possible at this time. I wish I could have helped somehow to save her. let's hope we can do better in the future.
ReplyDeleteThe first few weeks after Alexander died, I couldn't get those images out of my mind (he too had a "rough" death) however, I can tell you that for me, after 9 months, I don't think of those images all the time any more. They don't come to mind often. Instead it is all the wonderful moments.
ReplyDeleteI read the book "heaven is for real" and while I didn't like it for the most part, the part that I DID like was when the little boy described being with the Angels and not being afraid or in pain. That part made me start to cry. After that, is when I stopped focusing on how terrible the death was, but instead believed that Alexander felt none of the pain, was not afraid at all, and was already with the Angels. That brought me a lot of peace.
Mike,
ReplyDeleteThat sounds very traumatic. I am really sorry that that happened - it was hard to read so I know it had to be tremendously hard to witness and to remember. But I don't believe for a moment that your daughter questioned your desire to help her and I believe you were a comfort - to have Mommy and Daddy there, to hear Daddy's voice, to look into Daddy's eyes. You and Kezia were always there for your daughter.
I understand that it's common for people to blame themselves when things happen - I should have done this or that. We all want to feel like we have some control over things in our lives. But, Mike, there is no logical reason that you should have caught the salt issue. You had doctors there who did not catch it. You and Kezia are not doctors. You had been through a lot the days before that too with Saoirse's bowel issues and trying to figure out how to get the tests you wanted to see what was going on. There is no logical reason to blame yourself.
I have read that people aren't as compassionate with themselves as they are to others. One thing I have read about how to learn to comfort oneself is to talk to
yourself the way you would a friend who was in this situation. What would you say to a friend who was in your situation and said he blamed himself for not identifying the salt issue earlier? Then, you say that to yourself whenever you think you are to blame.
Love to you and Kezia every day. Thanks for continuing to write.
Courtney
Oh Im still so sorry for your loss, but dont focus on the negative, the errors, those last moments of her in pain. Remember the good times, the laughs, the smiles, her life outside of the cancer. I know it consumed so much time, but your lil angel was here for a reason. She fought the good fight, and it is through her so many of us know about this rare cancer, how much more needs to be learned and discovered. You and your family have made that happen. So dont feel as if you have failed. In her memory, the search and the fight will continue and though she lost her life, she isnt forgotten and God had a special purpose for her we just dont understand. But its not for us to understand. I know its hard and easier said than done, but you never failed your daughter. Not once.
ReplyDeleteI know that you will never forget the last moments of her beautiful life Mike, but you musn't think of them over all those other good moments that you all shared. No one wants that for you, and I bet your little baby wouldn't want you to focus on something so sad either. I'm sending you continuous hugs, and I know I always say that, but thoughts of stregnth too. Breathe in her toys today, wear mismatched socks today and play with Fallon today. Hug your wonderfully strong wife and show eachother that you will not rest until you have made the difference you intend to in the fight against childhood cancer. I have so much faith that you will. And I hope that you're one step closer to finding a group where you can share your story with other dads who have fought your battle. You are never alone in this. You will always have those of us who have been effected by your struggle, and story. I will always be here, and I have always been on a mission against childhood cancer. That's why I work for St. Jude Children's Research Hospital. I need to help make a difference even in the small way I can. Love to you and Kezia.
ReplyDelete//Jennifer O'Dell
That must have been hard to write for you. But I hope it helped to share it. Sometimes if you sit and think of sad thoughts they overcome you, but talking about it helps (in my experience). I'm so sorry you had to witness Saoirse suffer. I hope and pray that in time the scary and upsetting memories will fade as the happy ones are replayed more and more.
ReplyDeletei felt a pain in my heart reading this....i so hope you and your wife something amazing in your life to help lessen the pain if at all possible, im sure your baby knew you did all you could and you loved her as much as possible.
ReplyDeleteMike, I also watched as medical personnel unsuccessfully worked to revive my son, David, who died a week before his first birthday. For months those were the only memories I had of my precious son and I suffered. In time, those hideous memories began to integrate with wonderful, life-giving memories and in time lessened.
ReplyDeleteBe patient with yourself. May peace surround you and your wife
I'm sorry.
ReplyDeletePlease don't let anyone take your grief away. It is yours to deal with in any way you choose. Cry, scream, run away, paint the house, sit quietly, bake a cake, whatever you need to do, you need to do. Grief is a process that no one knows because your grief belongs to you only and in your own time you figure out how to go along.
I cannot pretend to know how it feels to lose a child. I do know what it feels like to lose a spouse (at 42 yrs old) and some days the pain was/is still just unimaginable. But you know what, 11 years later I hold every memory close to my heart and yes, I am moving "along" (note I didn't say "on"). My heart aches for you and Kezia but always remember the sweet memories of a sweet baby girl that loved her parents unconditionally. I know she will always be keeping watch over her Daddy and Mommy. Peace to you and you family.
Thank you for the posts, as difficult they are, they are appreciated. Your family has affected my life.
ReplyDeleteI am so very sorry for your loss and what you are going through. Losing a child is the worst thing to go through, unfortunately I share that much of your experience. Now, years later, I wish that I had done something differently at the time and been advised to seek legal counsel. Obviously you have so many emotions to deal with, and this is not a high priority, but I only mention it because of the statute of limitations that may be imposed by your state. I waited too long, and now am forced to sit silently... Please at least find out the information if there is such a deadline in your state and you will have the knowledge of any time constraints. A good, compassionate lawyer (yes, they exist) could help you gain the funds that you could one day use to make a true difference about this disease.
ReplyDelete(I am not a lawyer, in fact, I am married to a doctor, and he would be the first to attest to how much negligence is out there...)
Wishing you peace...
Suggesting someone who just lost a child to sue the doctors because they could not save her due to having a currently uncurable cancer is a
ReplyDeleteSure way of getting them go down a path that only leads to destruction and even more scaring. This is not a case of negligence but a horrible disease that is not treated effectively due to lack of knowledge and medicines.
The energy, effort, and financial contributions is better focused on fighting the disease.
I just stumbled over from a post Ashley wrote at Lil Blue Boo. I have six month old who is sleeping in the other room and your posts have hit me to the core. I'm so sorry for your loss and your ongoing suffering. I know that being sorry can't help you. But my heart aches for you and your wife and your sweet baby girl. Your posts remind me that each day passes in the blink of an eye and that we are all just vapors.. Hug those you love and hope. I'm praying for you and your wife. And I am so so so sorry for your baby girl and for you. And thanks for sharing such a deep part of your heart and lives. I don't know what else to say- but thanks.
ReplyDelete