January 6, 2015

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Interim Maintenance day 35: Missing

(I am feeling like a major slacker since its been 15 days since my last update! We’re gonna have a lot to write about)

Scarlett is back in the hospital for her next round of chemo. She is scheduled for a five day admission. She was admitted at 8:30 last night for hydration, a lumbar puncture this morning followed by chemo. Her doctor was once again very impressed with how well she does during her LP. She gets only light sedation – a little morphine and some lidocaine. She doesn’t flinch, doesn’t cry, doesn’t get upset. She is so wonderful! And only two. The child amazes me. It is now 24 hours post admission and she still hasn’t started her high dose methotrexate (MTX). Her urine pH must be less than 8 in order to start. For some reason, her pH won’t go down this time. They are testing her urine and kidneys to see what’s going on. Being at home and work is really difficult when things like this come up. I want to be there to ask a million questions and get my answers right away. This also means that her discharge is getting pushed back further and further. The MTX is infused over 23 hours followed by 72 hours of hydration to make sure her kidneys clear the medication. So, because she hasn’t started yet, she won’t be discharged until at least 8:00 Friday.

I am finding this admission really hard. I think that’s because, since it’s during the week, I can’t be with her. I have to work. I would love to be there to give hugs and kisses every night, to comfort her, to be there. But I know that she is in the best hands with her Daddy. I miss my baby girl! I miss my husband! I am lonely at night without Brock. And I am miss my baby every minute.

Tate misses his sister. He asks about her and we talk about her a lot. We talk about “what do you think Scarlett is doing right now?” He wants to read a book he has about siblings with cancer. And he misses his daddy. Mama just doesn’t build Lego garages the same way that he does.

Evie misses Scarlett too. Last night we made a wish on a star. Without any prompting, Evie wished that Scarlett and daddy would come home. She is harder to put to bed at night because she shares a room with Scarlett and Scarlett is not there. Before Scarlett’s diagnosis, the two of them had only been away from each other twice – each one for a doctor’s appointment. Now, they spend almost as much time apart as they do together. I always love to see them together and happy to see each other.

When we are apart, we are incomplete. Our family is the most important thing to each of us. Time is so precious when a child is sick and that is the one thing that you can’t be given. Which is why it has taken me 15 days to write a post. We have been enjoying our time together so much. We were together for Christmas. We had the chance to visit our newest family member, Elliott. And we have been enjoying Scarlett’s personality so much since she’s been feeling so well. She really is hilarious when she is well! But for the next 5 days, we must go on, even with a part of us missing.

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