Month: December 2013

Knowledge

This morning I woke up feeling clean. The fears of last night subsided and I feel compelled to write. To say how grateful we are to be waking up with our children. So many parents that lose children don’t get the knowledge we have been gifted. Knowledge that the day she was diagnosed was also likely her last birthday…we did it right. Most likely our last holiday season as our complete family…so we going all in. And having the time to say what we need to say, prepare the best we can and give her as many life experiences as possible. With gratitude in my heart for all of you reading and sharing this experience with us. What I failed to say last night… Merry Christmas and thank you!

Christmas

Christmas… We couldn’t have pulled it off without help from family/friends. Friends who wrapped presents and family who stayed here til 1am Christmas Eve to help assemble and move furniture. We got our new couch…our new snuggle spot…I love it. I am sitting on it right now. Will this be the place she takes her last breathe? Christmas eve was good. Family at my sisters house. They played present passing games and ate a gluten free meal and fed off each others excitement. Our kids had a great time and as is per usual for the Kranz family we were virtually the last to leave. I was happy to stay up past midnight…I didn’t waste a moment of what will likely be her last Christmas Eve sleeping. Tonight will likely be the same.   This morning was great….slow and lazy and full of happy smiles. Santa spoiled the kids this[…]

Expectations

Expectations… are a waste of time and always seem to be wrong. Yet I cannot stop myself from having them. i expected the last day of radiation to be a celebration. For me it was anything but. Because now we do nothing…At least during treatment I felt like we were fighting, like we were doing something. Now all we can do is just wait for the tumor to start re-growing. Is it already? We went bowling to celebrate, a gift from her Santa. I thought it would be perfect ending to such a happy day. Instead I looked at her and felt so angry that we have no more to do to help her…nothing more to try to heal her or get that tumor to shrink. It was the ultimate reminder that there is no cure….not a damn thing we can do. But she had a great time…that should be[…]

pillow fight

Tonight is our last night here in our little apartment. Even if radiation doesn’t happen tomorrow we won’t need a overnight here. I am glad that she will be happy to be done. Radiation is hard on a little body. But now I have to share her everyday…and she has to share me. I miss my boys, all 3 of them. I cannot wait to see them every morning and night. But I also have truly enjoyed this time with my daughters. Jennifer and I have gotten so much closer over these 7 weeks. We both have learned so much about each other and I think ourselves over this time. Its actually a little amazing how quickly we have adjusted to this new lifestyle. Our girls…sisters…Baby Charlotte and Baby Jennifer have also grown closer. I feel like this time of pedicures and movies and tea parties and most importantly giggles has[…]

first/last

Firsts and lasts. I feel like thats my everyday. First and lasts. Radiation went amazingly well. Beforehand todays anesthesiologist pulled me out to say it was up to us if we wanted to cancel or not. That the way JLK is when asleep for radiation is the hardest case they have seen. Just her breathing issues that is…. But we went ahead with it since we were there it was worth a shot. And she did well…( I started to type she killed it…so much of the way I talk is changing) We had some quiet time at home and then she wanted to have a tea party. Its one of her favorite past times. Today she wanted to get all dolled up….all of us. So she picked out clothes for the 3 of us. Since I knew she wanted to do a tea party I called a place about[…]

4 eyes

Up and down…up and down. Thats our everyday. This morning was a rougher one again. Radiation should be very quick. Today took 1.5 hours for Jennifer. Breathing difficulty again. Because she has already been cancelled so much and we are so close to the end they kept at. Going into recovery today she was still asleep. When I got in to see her she had dried blood around her nose and mouth. This was new. And scary. They had to be aggressive today to help her breathe. And when she woke up she was thrown off…being under so long and me being there I think both can negatively impact her mood. But it also makes her need me so much. She grabs me and pulls me to lay on top her. Like seriously full weight of my face and upper body on her. Its actually very sweet…like I am her[…]

ok

*****Before I journal I want to explain that we move the emphasis of fundraising over to http://www.theyoungandbrave.com/warriors/jennifer-k/ The reason for that is the website/foundation gives us 100% of the donations. Also people that donate can get a tax write off…We are trying to add to that site all the money from the gofund me site….I wanted to be sure anybody reading knew/understood why/what we are doing and that we aren’t trying to hide the money thats been donated!!**** Its so hard to say no to her. Tonight she wanted to go to the nutcracker…like right now. I am not sure if she is getting “spoiled” or she knows her time is fleeting so she wants to cram it all in.   She has asked for the snow and for me to teach her to drive a car. I tried to find a nutcracker in the area that was happening tonight and couldn’t. But[…]

prepare

Last night was long. Teething baby made for little sleep but I woke up to this sight next to me. How could it not be a great day ahead……….. Then getting into the car she fell. I was getting the baby in, I didn’t see it. But the sound of her crying tore into me. It wasn’t the pain in her cry that got to me…it was the shock in it that I could hear that ripped m in half. Her body gave out on her and she tumbled backward onto the curb. Her little 6yr old body is growing too weak already to hold her up getting into our car. I ran over and put the baby on the floor and scooped her into my arms and just held her. I couldn’t even force myself to say “its ok” because I think she is starting to realize….its not. New[…]

laugh

Her laugh. Its just the greatest. And since all of this really got going its changed. Its gotten stronger and deeper and wider. She just lets it free and I can just see the person making her laugh feels powerful and wonderful. Its a little gift she gives… I hope I never forget the sound of it…but I am thankful for video. JLK laughing with daddy Tonight she played with cousins. She adores them. But its interesting that she starts the evening off unsure. She sticks close to me and needs to get settled in before jumping in and playing. Not sure what thats all about but I am glad I can give her a sense of comfort. Once she was comfortable though she had a great time. Being named the taco queen, laughing and coloring and watching silly videos. Other wise know as being a six year old girl. After[…]

notes

Woke up 45 minutes late today and almost didn’t catch up for the rest of our day. We made to good time to the hospital and it was a good day to be running behind because the machine was down so we ended up waiting for them to be ready for her still. Today was the first day for her new set up. There were still hiccups though, she had difficulty breathing again. They were able to give her a little assistance so she could get treatment which means we are still on for our last day to be Dec. 20th. But I can’t help it, I worry. When I got back into recovery  she had a mask on and suction. Normally she is just sleeping.  I am wondering if they are going to say completing radiation isn’t worth the breathing difficulty anymore. She also woke up in a terrible[…]