Trying to keep my head above water

So Thursday’s are hard, anesthesia has meetings early morning which means the kids get bumped by 90 minutes, which means a lot of time to occupy everyone without eating an run the insane asylum. Meg has been trying to take one for the team and let me run in the morning before the twins get up (there is a chance they will get up while I am gone) and on my way in I picked up the mail with a care package from my mom (I feel like I am in college again) inside were among other things “feelings books” for the twins. Somehow these two books made it into my bag and to radiation with us:


You just have to laugh at the irony, I often worry about both C and C feeling sad or mad, this whole experience is just so surreal, I have often asked what is the worst age for this to happen, the answer is they are all bad for different reasons and I will dedicate a post to this when I have time, but I could not believe these books made the trip, everyone was definitely hungry, I just hope we can minimize the sad time.

As for the rest of the day, like everyday we just try to get through it and keep our heads above water. Con went straight through today with PT after radiation and that was the highlight of our day, this was bar none the best PT I have ever experienced.

After PT we started the trek to children’s for the eye check-up (it takes about an hour door to door with no traffic). When we got there much to my surprise the wait was not long (added bonus I met a fellow cancer mom whose son was diagnosed at 2 and she told me it does get better) and we went back. We met with two doctors and I was psyched because we would get out of there before rush hour. The verdict was the abrasion is slowly healing (it is visible to the naked eye so pretty large and bad) but the infection seems to be clearing. Long term Connor will need a custom lens (it is a medical device similar to a contact lens that can both protect the eye and moisten it) so we are just figuring out when the 5-10 fittings can fit into our schedule! As we are finishing up, I comment I feel wet and notice something laying on the ground, I pick Connor up to begin packing up, he wants to get down, I let him, notice a drop of blood, look at my hands they are covered, see Con’s tube, it is dripping, look at his shirt, it is covered, I scream. The eye doctors rush in, I scream at them stay away, no one touches the port, get me a chemo nurse. I am freaking out, the port is the holy grail for cancer patients, infection with the port is a huge problem and no one should touch the port except certified chemo nurses. I debate on calling the clinic here vs calling Dr. G., I settle on the clinic here, a nurse from the onc floor came down, talked to the nurse from the clinic here, they decide on deaccess, then reaccess, flush and heperon, with this combo they think infection is minimized, and we can skip the antibiotic and just go on fever watch. It was very traumatic and time consuming (the kits needed to be brought down to us and the attending eye dr thought the whole thing was fascinating, lots of questions) and Con and I got home around 7 in our bloody shirts, nothing is ever easy! Here is Con waiting:



When we got home there was more food than we could imagine and I actually ate a normal meal for the first time since being here, I talk about Heartworks a lot and can not once again express how much easier they have made my life since this has happened, today a heart workers mom who lives in the area dropped off an amazing meal, I needed this so much and am so filled with gratitude to this amazing organization, thank you for ending a long day on the right note, and making it easier for us. I have a ton of thank yous to get too and some awesome t-shirts from a friend of my mom to take pictures in and post and promise I will as soon as I get my feet under me (feel like I have been trying to do that since February)!

But to end, here is Connor, with his new “lovie” that he stole from the playroom, passed out after a napless day with his eye shield in tact! Oh and yes he is sleeping with a maternity Boppy, knows it was mommy’s and can not sleep without it, it goes to every hospital stay with him!!!



7 thoughts on “Trying to keep my head above water

  1. Oh Erin. I’m crying picturing you managing the whole port situation. I am in awe and so proud of you for being with it enough to know to protect it and strong enough to make it happen. You being so aware and worried about their emotional well being will mean whatever medical memories or fears they retain you will find the best therapy or way to help them through it, and it will be okay. Most days are hard this one sounds especially intense. Heart works sounds more impressive every time.

  2. Love the picture of SuperCon sleeping with your maternity pillow and his new lovey. What a day. Hopefully these will be few and far between in Beantown. Once again you showed how amazing you are in a crisis by managing this difficult situation so well. So glad you got a “normal dinner” and can now relax. I’m sure it will be great to get Casey back this weekend and hope you can do something fun.

  3. Erin, now I know where Connor gets his name “SUPER” from!!!! Hope you all have a fantastic time at Lake Winnie this weekend.

  4. Erin, you are amazing and that is why Connor is so amazing! He can tell he has a mom who is dedicated to do anything for him and all the love you have for him. I am so proud of you!

  5. Love the pics… the first one appears joy from the snack… second one is like “all gone?” and third is just pure sweetneess.
    Now, from where I stand, you are doing more than keeping your head above water… amazing Erin, simply amazing! I think we need to brand a SuperMom shirt just for you!
    And thank you heartworks for helping end their day on a positive note 🙂

  6. Erin, that must have been so scary! You really are handling all of this so well – Con is so fortunate to have such a loving Mom who always does what is best for him. (((Hugs)))

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