When they told me treatment would be 6-9 months for the twins, I was a mess. Living away from home for 6 months seemed impossible. But we did it. We did it in 5.5 months actually. And its been a week now since the girls were discharged from the hospital for their end of treatment and I still don’t feel like it’s real.
Last Monday we were waiting for the doctors to come in and tell us their new plan. We had been hoping that Tuesday morning we would have surgery to do our final biopsy and remove the PICC lines. I had been DREAMING about life without PICC lines for a while, but as I should have known, plans always change. The doctors came in and informed us that the girls counts were still a little low which made them uncomfortable to remove their lines, just in case they were to need iv antibiotics. They would be more comfortable waiting another week. Ugh! Here we were, so dang close to the end and another set back. Round 4 had so many ups and downs, set backs and was longer than any other round, I was just ready to be done! But that’s not a reason to put the girls at risk. So we (reluctantly) agreed to wait on removing the PICC lines. We didn’t want the girls to undergo anesthesia twice, so this meant the biopsy would also be postponed. Frustration. We came to the agreement that the biopsy and PICC removal would happen on the 19th since we were going back for helmet adjustments anyway. This meant two more weeks of PICC care at home. Shoot. But then the doctor said it. “So they can be discharged today then”. What?!?
It was 11:30 am and nothing was packed or organized, Kenedi needed and EEG for some odd episodes she had been having, both girls needed an echo to check their hearts, they needed RSV and flu shots and Kenedi needed site care. We needed to get a helmet scan appointment for Tuesday morning before we left town quick and we had to get to the mayo store (that’s only open til 5 and was downtown – not connected to the hospital). On top of all of that, we had Teagan at the hospital with no one there to help watch her. Oh. M. Gee. We were frantic. Maybe I should say I was frantic. This was not the plan! I didn’t have anything ready! I didn’t have my lists done that planned out what goes in what tote! (This whole cancer treatment has wreaked havoc on my ocd planning needs!)
Luckily Aaron’s dad and sister were in town so they came by the hospital and grabbed Teagan for us. Since we would be staying the night with them that night, they also took a bunch of our stuff home with them. We then spent the afternoon throwing things into random totes and boxes, loading the car, and trying to get all the girls’ tests completed. It was crazy, but at 6:30 pm, we left the hospital. For our final discharge. I only cried a little bit when hugging one of our primary nurses. I think that was maybe a blessing of the chaos, I didn’t have time to get upset about leaving all of our new friends. Over this last week I’ve shed a few tears and missed our nurse family often, but we are so happy to be home!
The girls are doing well at home and we are settling back into a routine. Teagan loves everyone being here and it’s such a JOY watching her play and interact with them. Their faces light up when they see her. While at home we still have some medical “to dos”. We have to flush the PICC lines twice a day and make sure they are still working, as well as get labs done twice a week. We also have to do site care on our own. Site care in the hospital with experienced nurses gave me anxiety every week and now Aaron and I are doing it at home like it’s a piece of cake. The twins also have their ng tubes in still but we are working on feeding them by bottle.
It is so strange how the end of treatment feels a lot like the beginning of treatment. The suddenness of it all, the sadness of leaving life as you know it, the chaotic packing up and rushing out the door, the long car ride into the unknown, it’s all so similar that it slightly terrifies me. That’s not all that’s terrifying though. Although I am beyond happy that we are all home together, I would be lying if I told you I wasn’t terrified each and every day of relapse. Terrified that I’ll wake up and one of the girls will have a spot on their body that resembles the original spots from last year. Terrified that the upcoming biopsy will show something bad in their marrow. Worried that they won’t eat from a bottle ever again. Worried that they won’t develop and reach milestones. Worried about long term effects of the chemo that saved them. I sometimes wake up in a panic that I forgot to flush a line or have a nightmare that the girls have pulled out their lines and they are bleeding in their sleep. And the list goes on and on.
But each morning I am reminded of my little blessings and remember that I cannot live each day scared of what MIGHT happen. I didn’t live in fear before cancer and I shouldn’t do it now. I have been diligent in my thought process during treatment to not allow cancer to steal my joy. And I intend to keep that line of thinking now, off treatment.
So, I encourage you today friends, to find the joy in your situation. If you’re having a rough day, week, or month, whatever the problem may be, find the joy. And hold on to it.
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