“Put a sticky note on the bathroom door with her ANC,” I asked the nurse last night. Labs are drawn every morning at 4 am and they usually only take a few hours to get back. I woke up at 6 am looking in the dark for the sticky note – there it was in black sharpie: 170. I knew this would probably mean the bone marrow test would be cancelled for the day. At 8 am our sweet nurse, Lysen, confirmed that it had been cancelled. By 9:30 am I was told that the test was scheduled for 2:40 this afternoon and that it would have been earlier if she hadn’t eaten. Drat! This was frustrating, confusing and concerning. I didn’t understand why they would cancel the test and then reschedule all in the course of a few hours – what had transpired to bring about these decisions? Once again, you try to go about the ordinary tasks of the day to make it through the minutes until there might be answers. Just get her diaper changed. Put on her clothes. Now come the shoes. Distract her so she doesn’t see the sippy cup and keep asking for milk which she can’t have. Unwind the IV lines. Walk down the hall. Pick out a bike. Make a loop around the unit. Make another loop. Mundane task after mundane task just to hold in the fear. We want to know how Allistaire is doing but it is like willfully making yourself walk into a dark tunnel, not knowing what’s on the other side.
While I did talk to the doctors during rounds, I’m still not totally sure I understand. This is the best I can do to make sense of things. The bone marrow test must take place within the time span of between the 28th and 35th day from the start of chemo. Last Wednesday was the 28th day and tomorrow is the 35th day. They want the blood counts to be up high enough so that there is something for them to actually look at when they test it, however, they must also have time parameters because blood counts are constantly changing and they need to have some standard against which to test things. I’m sure it is more complicated and nuanced than this and thus above my head. They decided that because her ANC has been close to 200 three times (175, 174, 170) and because tomorrow is the 35th day they are going to go ahead and do the test today. I asked them several times to be honest with me if they have any concerns. They say no, they do not have concerns, and they say they have no way of knowing if there are concerns without looking in the marrow. So all of this to say, it seems that Allistaire’s counts and the bouncing around of the ANC is normal but at the same time they need to do the test within this particular time frame. The little girl down the hall who also has AML started her chemo two weeks later than us and has already had her ANC start to come up a tiny bit. I guess everyone is just different. Also, as some means of encouragement, the intern doctor said that Allistaire’s platelets are “gorgeous.”
Please pray for Allistaire while she is under for her test. Pray especially that they are able to get good and sufficient samples of her marrow as they has been a major challenge the previous two times. Pray that she won’t be in too much pain and that we will know if she is so we can give her more meds. Please pray for Sten and I, pray for all of us whose hearts are bound tight to Allistaire that God would uphold us regardless of what news we get. Preliminary results could come tomorrow afternoon but if they have challenges with the sample as before, it would be another day or two. Regardless, complete results will probably be about 3 days away.
Here are some fun pictures from our morning. We’ve had the delight of snow the last few days and have enjoyed gazing out the window at its repetitive, lulling, peaceful beauty. You will also get to see some neighbors of our’s on the Unit who have become cherished friends. Little Rowan is the 9 month old baby boy in the stroller with his mom Meagan. Piper is our 7-year-old neighbor and AML pal. Allistaire said Piper for the first time today. Lastly, you will see Waldo on the new construction portion of the hospital. He moves around each day and the kids get some sort of prize for finding him. Today we had the fortune of seeing him up close.
Praying, praying, praying. I was thinking of you and praying she could have the test done today. Lord, I pray for this test. We know You already know the results. Thank You that nothing comes into our lives that hasn’t already sifted through Your loving hands. Oh God, I pray with everything in me that the medicine would be working. I pray her test would come back with good results. God, we ask You to heal Allistaire. Lord, please be with Sten and Jai and all their friends and family. Peace. We ask You for peace while they wait for the results to come back. God, give them strength them to handle whatever you bring their way. Lord, we hope in You.
I heard this on the radio this morning and thought of you…
Just kidding… This is it:)
Christy, I can’t figure out which song you’re trying to share with me – I don’t know that the link is quite right
Bummer! I don’t know… I clicked on the 2nd link and It took me to it, but I’m on my iPad, so I don’t know if it’s different? Anyway, it’s Aaron Shust’s “My hope is in You”:)
I will pray for your family. I smiled when I read the part about Waldo. That is neat how the hospital does little things like that. I have found watching the snow so peaceful. I love to watch them moving around in the air like little fairies. I do not know why but that is what they remind of. Where will they land how many can fall at once. All different shapes ans sizes not like rain all the same. There is comfort in watching the snow fall. I will pray that things will go well. I think of you guys very often. Michelle Brunner
I love each and every post and always have reasons why.
here are a few today:
1. “Just get her diaper changed. Put on her clothes. Now come the shoes. Distract her so she doesn’t see the sippy cup and keep asking for milk which she can’t have. Unwind the IV lines. Walk down the hall. Pick out a bike. Make a loop around the unit. Make another loop. Mundane task after mundane task just to hold in the fear.” This was such a profound paragraph-giving insight into your day, but also into what it keeps at bay. I’m reminded of ‘whether you eat or drink, do all to the glory of God.’ cuz eating & drinking are so mundane (well, depending on who’s cooking, too, i guess). 🙂
2. Allistaire’s platelets are “gorgeous.” I laughed out loud cuz i can TOTALLY hear you saying ‘gorgeous’ (like Carl, he’s Soooo bad’) in that awesome & dramatic voice… that has us all dying of laughter.
3. LOVE the Waldo element.
And, of course, I love that Allistaire gets to have cool friends and gets to have her marrow test… such contrast: fun friendly easy kid relationships… founded in the shared environment of internal disease. Beauty from ashes.
It (beauty) will always rise.