Category: treatment

lucille packard

I’ve made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia surgery. His pediatrician referred us to Lucille Packard. Its scheduled for first thing Friday morning. Initially on the drive yesterday I remembered the evening we first made the trip for Jennifer. Lost trying to find our way to the emergency room. How big and foreign the hospital looked. .. I still can’t believe that just a few weeks later I would know many of the hallways of this place.. That my almost 6 year old would also. How in the beginning we ate at one cafeteria but eventually decided the bigger one.. the one connected to Stanford was better food for her. So we would go there. I had the same breakfast every morning .. after she was out of radiation. I thought about getting it tomorrow. A yogurt parfait with soggy[…]

changes everything

Death changes everything.. one thing I have really noticing rising the the surface lately though is perspective. The boys were sitting with Tony eating lunch mimicking him. That natural adoration little boys have for their Daddies.. how they watch the way they drink, eat, walk and dress and then try to do it the same way. I miss that .. so much. Having a little girl to mimic me in that same way. To learn what it means to be a girl.. a woman .. a wife from me. It will be so long so many years until Charlotte does that with me. But I am so grateful to have a living daughter. That gratitude is so purified now. So truly simplistic. And powerful. Even my reaction to jokes is so different now. There is a picture going around on social media of the cast from the tv show Friends.[…]

swallow

Sometimes I find the changes we suddenly face so hard to swallow… Tomorrow we leave for our daughters Make A Wish trip. She loves Disney…so going to Disney World will be amazingly fun for her. But I think thing she is most excited for is being with our whole family together for the vacation. Our kids…they fight…they are after all siblings. But they love each other so much too. Jonathan insists that he be the one to push her in her wheelchair. And Jennifer seems to really like it. Of course I do too! Something got Jonathan sick on Friday night…and Tony a bit sick last night (but he is sure its food). Honestly though we have no way of knowing if the rest of us might get sick on the trip. We are a “rush” trip. Meaning her drs felt that we needed to go January at the latest[…]

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[…]

honest

Its so hard to try to get into a childs mind…to understand or even know what they are thinking. I want to anticipate Jennifer’s needs and fears but the kid sometimes seem to be coming out of left field. We got into a extended stay apartment today but she didn’t want to come. She was so worried about what it was going to be like but I couldn’t understand what about it was causing her concern. When we got here she went in with my Dad and came out to the deck and yelled to me that she likes it. YEA! I am excited for it too. I am hoping this will provide her with some sense of normalcy and stability. Another bit of good news is I got help from the right people at Stanford and they got a frying pan to make eggs for her and put aside[…]

gift

This experience has showed me the goodness in people. We are so grateful for all the love and prayers, the monetary support and meals being delivered to my men folk back home. I am trying really hard to help JLK see how lucky we are and to teach her to find ways to pay it forward. Its hard to do though since I catch myself wondering why? I am no longer raising her to be a productive adult or a good wife. I want to give her only yeses. It has been brought up that maybe we should send her back to kindergarten after treatment. As a way for her to know she is ok and not be scared that we aren’t making her go. Not gonna happen though, both since I am selfish and I cant imagine not being with her….(that make me pause knowing I am going to[…]

Too Little Too Late…

*******the follow me button is ready so this is my final caring bridge posting. I will be blogging on our love4Jlk.org site. Find the follow me button to get updates who I post***** I am writing from the hospital. Jennifer had some severe tummy issues so they admitted her. At first they thought she would have to have the feeding tube to get the sheer volume of meds into her. She has been a total stud though, rocking getting it all in herself. She is due for another dose in 20 mins so we shall just see how that goes. What lead us here makes me feel awful. Basically she is severely constipated. Today we were at the Palo Alto jr museum and she decided she had to go, but she couldn’t. It sounds kinda funny but it was awful. She was screaming in real and true pain. She wanted[…]

Deceiving

So the port thing wasn’t too bad at all, I kept her distracted as the nurse got it all back in and ready to go for the week. But yowsers she was in a awful mood this morning. Obviously I get why and I even get why she takes it out on me, but it still sucks. I can’t just allow her to be rude and refuse to do what I say. But I also think this dance is good for us. Her going back to school for a bit after radiation is an option that has been brought up by a few people here. I have been told it might scare her that she all the sudden doesn’t have to go anymore. But I think for her it’s not something she is even noticing. However me discipling her and being cheap is something she notices. The day after we[…]

Day 2

Today was our first day of what the treatments should look like from here on out. Let me tell you it’s an early day! I am so busy from the moment I wake up till I crawl into bed. I was thinking tonight nursing the baby to sleep what a gift that actually is. I miss my friends and my Real Housewives watching time but I am so thankful for not having too many quiet moments. What will I do with myself when all of this “busy time” is over? So I guess its another thank you to all of you reading and supporting us for keeping me busy. We have to do be in the waiting room at 7:15. She is the first appointment of the day. Again everyone was amazing with her…and me this morning. Last night we baked some gluten free cupcakes and she wanted to bring[…]