Tag: diagnosis with dipg

waiting for the shoe to drop

A common saying I had no idea where it came from .. but its been chasing itself around my head the last few days.. So I had to find out .. according to wiktionary Etymology : A common experience of tenement living in apartment-style housing in New York City, and other large cities, during the manufacturing boom of the late 19th and early 20th centuries. Apartments were built, similar in design, with the bedrooms located directly above and underneath one another. Thus, it was normal to hear a neighbor removing their shoes in the apartment above. As one shoe made a sound hitting the floor, the expectation for the other shoe to make a similar disturbance was created. I was kinda the opposite of this. I honestly was walking around fairly confident in regards to my children there were no other shoes that could drop.. I have been more scared of[…]

..3 years ago..

I feel weaker… more run down than I have the last 2 anniversaries of this … this date, this message stolen from FB.. “After a bit of a whirlwind Jennifer was diagnosed with a brain tumor. We are home now. On Monday we will go in after the team has discussed her case and come up with a game plan.  I will set up some sort of a caring bridges or something site. For now though my older sister Ann and Renee are my “word spreaders” But please know if you want to call or text feel free. If I cant or dont want to answer I won’t.  Tony Kranz would prefer a little more silence on his end. Our number one concern is all of our kids. So if you see them please just be normal and smiley with them. And remember even though JLK is the one with the medical diagnosis all of our kids are[…]

inhale and exhale

September marks the start of pediatric cancer awareness month.. I feel like I should be writing all about it. The ways to be involved. To not JUST be sorry but to be active.. but I can’t.. because I am selfish… and I am fucking struggling. Because the end of August and September seems to mark for me the hints of what’s to come. Soon it will be 3 years since her first symptom appeared.. then 3 years since her diagnosis.. Followed up with holiday after holiday, all now left to fight to survive and find the light again while under the shadow of Jennifer’s death. So many losses .. isn’t is supposed to be getting easier.. but I know. I know and I dread..  I am heavy. I am full. I have been feeling like I am on the verge .. almost constantly. Sitting with my living loves, snuggled on the[…]

contagious

Its not contagious. Thats one of the early things you tell a child about cancer. As their friend/sister is battling.. You can’t catch it from them. Seems like a good thing.. But maybe not… In New York we went to the American Museum of Natural History. One exhibit I wanted to see was the one on disease. I didn’t expect it to impact me so emotionally.. But it did. Silent tears fell .. just a few.. I remember I had my arms wrapped around me.. tighter and tighter… I guess thats what I do. I instinctively hold myself.. I don’t think I ever did that before.. is it you? do you make me do that now? I had given Bridgette to Tony so I could really read each sign. .. and tears started to fill my eyes. So many thoughts .. anger and sadness piling up. And surprising me. I[…]

the 23rd -12th-

12th. I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for next week. January 12th. Kids are at school and at my moms so I can write it in a solid block of time and get myself prepared. Its a big deal presentation. 1 month until THE 12th. .. ..again.. But I can’t concentrate. Its gnawing away at me. The time that I know is looming and coming too quick.. but also too slow. Because it feels like forever since I held her last. And its only been 23 months.. How will I last the rest of my life?? ..how the fuck will I last the rest of my life???? A year ago we were all packed up for our make a wish trip. Unsure what to expect but so excited for the adventure. Right before we left though.. the first[…]

full circle

  My head is swimming. I feel like I am in a room without a vacuum. Like I am trapped behind glass and I can’t get back to the real world. Because today I was terrified I was going to come full circle. Jonathan. He just started kinder and just turned 6. Jennifer. She started kinder and then her eyes started to change. One started turning inward. Subtle at first I though she was doing it on purpose. His eyes are changing now too. He just turned 6. He just started kindergarten. I tried to avoid noticing. Tried to pretend it wasn’t happening. But it is. Tony and I never talked about it. Other than me telling him not to get mad at him for it. Not to scold him since I knew for sure it was out of Jonathan’s control. But last night in the middle of the night[…]

done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel.. It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look! I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why. I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her[…]