Thursday, August 11, 2011

We can get away... Yet, we can't...

Chloe's oncologist gave us the okay to come up to Christa's parents' cabin for the week to get away.  It has been an opportunity to be away from the phone calls (well, landline), responsibilities (to some extent), and the general busy-ness of the comings and goings of life at home.  It has also given us a chance to spend some good family time together -- a trip to the beach, kickball in the backyard, s'mores by the campfire.

Yet, we can't get away from the cancer.

We arrived up here on Sunday evening and by Monday morning Chloe was showing signs of having a cold.  While we have the knowledge that Chloe is on an antibiotic and will remain on it for the duration of chemotherapy, her first illness since the diagnosis proved to be anxiety producing.  Lots of questions developed -- when do we call the clinic to let them know Chloe is sick?  Will they still be able to do chemotherapy if she has a cold?  This was supposed to be an escape...

On Tuesday Christa and I were able to go out for lunch in Ludington while Christa's mom hung out with the kids.  It was wonderful to have time to talk about life outside of the details of appointments as treatments are only once a week now.  However, within three hours of leaving the cabin we got a call that Chloe had a fever of 100.6.  We spent the 40 minute return trip planning what we would do should we have to take Chloe to the ER.  Thankfully, her fever had gone down on its own by the time we returned home.

Yesterday Chloe, Christa and I left the cabin at 9:30 am for the two hour trip into Grand Rapids for Chloe's weekly chemotherapy appointment.  The anticipation of these appointments has begun to wear on Chloe.  She was quite quiet, complained of a stomach ache most of the way to GR, wouldn't snack or drink, and was quite "clingy"before the appointment.  Once we got settled in the clinic, she became more talkative with the doctors, nurses, and the social worker who came in to see us.  After the appointment, you could tell she felt that the burden had been lifted.   She was ready to eat, run, and be herself...  Unfortunately we still had the two hour return trip and finally arrived at the cabin at 5:30 after the repeated refrain of "when will we get there?" had really begun to wear on Christa and I.

The difficult news from her appointment yesterday was that her hemoglobin levels are quite low and she'll need a blood transfusion on Monday when she returns for her next chemotherapy treatment.  The oncologist who was assigned to clinic told us the news like it was an everyday thing.  Will terms like cancer, chemotherapy, blood transfusion ever become "everyday" for us?

Sometimes this is all still a little difficult to believe.  Last night as we played a family game of Ticket to Ride, I looked over at Chloe sitting on Christa's lap.  The words "blood transfusion" echoed in my head, maybe still trying to find a place to root, to make meaning.  Can I truly understand what is going on inside that little body?  Maybe it's one of those mysteries of life that I'm not supposed to understand.  Maybe it is another one of those instances where I just need to trust and find grace...

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A quick prayer request...  Chloe has two medications that she needs to take each week, one each morning and the other twice a day Monday-Wednesday.  These have become a point of intense stress and anxiety for all parties involved, to the point where taking 1.5 mL this morning led to her throwing up her breakfast.  TMI, I know, but it gives you an idea of what we're dealing with...

7 comments:

fhguy1978 said...

Thanks for sharing your challenges and thoughts. Never TMI! We are praying for Chloe and the entire family. Enjoy your time away.

LadyHolland said...

We are still 'with you' all. I echo, "Never TMI!". It's reality, and for those of us rooting and praying, it lets us know how to hold you up. We are not growing weary; don't you either. Grace and love be yours. May wisdom be your sister, and understanding your intimate friend. h

Erin said...

I commented before that I too had stage III Wilms' when I was 5. And the paragraph about Chloe's anxiety prior to her clinic appointments really hit home. I had weekly chemo (vincristine) for 15 months and then every 9 weeks I had 4 days in a row of actinomycin-d during that 15 month period. I can distinctly remember being extremely anxious prior to going in for the chemo appointments. Granted I had to get "poked" every time (they didn't do ports in 1983) and to this day, my palms sweat and I have to look away any time I have a blood draw, so I think that anticipation of the needle going in was part of it but I also was afraid that something else "bad" was going to happen.

Even though I don't know you personally, Chloe is regularly on my mind and I am praying for all of you. Please feel free to contact me at emiller77 at gmail dot com if you want to talk (I also live in Holland).

Lara Parent Photography said...

Yes. You are in our hearts. Group hug from me and please explain Ticket to Ride. xx

Kristen said...

holding you in our hearts and grateful to be connected to your lives through your words.

We are with you.
Kristen & Noah

Derek Emerson said...

I think TMI is what people want and need to hear. Hard to be supportive unless you know better what people are dealing with. Our experiences with our children are different, but I can say the blood transfusions are "normal." Hemoglobin counts are part of your vocabulary, but the good news is that after the transfusions, Oliver is always feeling really good. I pray that Chloe does as well.

heather pietrowski said...

Thanks again for sharing. If it means anything, I do remember receiving blood transfusions and honestly feeling like I was just given a triple shot of much needed energy. I hope that Chloe will feel some of the positive effects of "new" blood! Thinking of you every day..