Day +13: Bumpy 2 Days

Hanging Out with ASA and Sarah

Sarah’s platelet counts have not climbed at all yet, so she is still getting an occasional nose bleed and receiving platelet transfusions. The nose bleeds are less intense though and a little easier to stop. Her platelets were the first to drop during transplant pre-conditioning and will probably be the last to come back to normal levels.

More importantly though, Sarah’s Absolute Neutrophil Count (ANC) was higher today (just what we want to see). She went from 60 (per microliter of blood) on Tuesday to 150 today. Neutrophils are a type of white blood cell that fights infection and is the primary measure of when Sarah is “safe” to come home. Her white blood count (WBC) is also rising and sits at 240 today. Once her WBC hits 300, the doctors will check her ANC count daily. The ANC and white blood cell counts track together pretty closely.

Sarah started retaining fluid sometime after she was admitted into BCH. This was detectable from her daily weight measurements. Not incredibly troubling until yesterday afternoon when she became really puffy around her eyes, cheeks, lips and generally everywhere on her body. Not just a little puffy, but really puffy. At the same time, she developed a fever of ~102.5F and experienced pain in her stomach area, legs and arms. This bothered Susan and me and even more so when the doctors said they were troubled by these symptoms. The Fellow that was working the BMT ward and checked Sarah mentioned the possibility of veno-occlusive desease (VOD) which is a problem with the liver resulting from chemotherapy as part of pre-transplant conditioning. Apparently it’s difficult to diagnose VOD definitively until it’s progressed a lot and even then, there’s not a lot of treatment for it. The Fellow mentioned a fairly new drug they could administer if it turns out to be VOD. The team of doctors don’t think she has VOD though. Sarah’s abdomen is not distended and her bilirubin count is normal. These are two symptoms that are needed to say she has VOD. I’d be lying if I said we aren’t worried though. Sarah did look a little better today (less puffy) and her temperature was only slightly elevated (~99F).

Sarah had a CAT scan of her lungs today to check for anything that might have been missed or was not evident in the x-rays she’s had over the last week. She also had a CAT scan of her head since she was complaining of headaches over the last couple of days too. Initial assessment of the head CAT scan looked clean and the upper area of her right lung looked a little cloudy. We expect to hear more from the doctors after they evaluate the CAT scans more fully tomorrow morning.

I guess it’s sort of a mixed message today, we are seeing signs of transplant engraftment (good news), but Sarah has some mysterious complication (not good news). Sometimes the doctors don’t figure out what causes fevers with the BMT patients and frankly, it will not bother me if we ever know what is causing Sarah’s reactions as long as the reactions go away. Please pray specifically for Sarah’s current complication to subside and for her to stay on track for recovery.

-Ben

Day +11: Return of The Nose Bleed

Sarah had a rough night last night. She developed a nose bleed around 2:30am. Susan and I noticed new bruises and petecheia on her legs and head late in the evening. We pointed them out to Sarah’s evening nurse and said she probably needed a platelet transfusion, but the nurse did not actually give Sarah the transfusion until after her nose bleed started. That was a little irritating because we think the nose bleed could have been avoided. Normally a nose bleed is no big deal, but when you’re in Sarah’s shape things spiral out of control pretty quickly. This is the second time she went low on platelets and developed a nose bleed. The progression is something like this: nose bleed followed by vomiting from blood in her stomach followed by coughing and sore throat (on top of existing sore throat) then wheezing and then an x-ray to her lungs to make sure wheezing isn’t pneumonia. It made for a long night.

The goods news was that the new x-ray looked better than the first one. We don’t think there is any pneumonia concern at this point. No fevers today either. Sarah’s bottom is beginning to look better (after the skin breakdown from diarrhea).

The folks at Ronald McDonalds House put us in an apartment today. It is intended to bridge the gap from leaving the hospital to going home. We are not sure if we are going to stay there after Sarah is released from the hospital or make the drive from New Hampshire 2 – 3 times a week. The apartment will be a big help for now though. Only 4 people can stay overnight, so we plan to have some of the children stay there with one adult.

No real signs of engraftment yet. Sarah did have an Absolute Neutrophil Count (ANC) of 60 yesterday (Day 10), but until her counts are checked again Thursday (Day +13) we really can’t say the engraftment has taken hold. We’ll post an update on her ANC Thursday evening. She needs to have an ANC >500 to be able to be released. We definitely do not expect that this week, but we are hopeful about next week.

Thanks for your prayers and concerns and help. Please continue to keep Sarah and our family in your prayers.

-Ben

Day +9: Nausea Back Under Control

Yesterday, Sarah threw up seven times throughout the day. The doctors took her off Reglan+Benadryl which is used for nausea. The Reglan was dropped to try and find the source for some tremors she has been experiencing. The tremors went away, but the vomiting came back strong. The doctor and I discussed the options for get the vomiting back in control. We’re trying a lower dose of Reglan and see if we can find the sweet spot for the tremors and vomiting. So far so good this morning.

Susan's mom and dad brought some of our children to visit with Sarah at the hospital Saturday, Jacob, Judah and Betsy. It really cheered Sarah up and she was sad when they had to leave. Her family means so much to her and it's really easy to take that for granted until you see her embracing them (not just hugging). Her love for all of us right now is hard to describe, I feel blessed to see and be a part of it.

No more news on the viral pneumonia. The doctors are watching her closely, but are not thinking there is much to do yet. Could be just a tiny case of pneumonia or maybe not pneumonia at all. The doctor told us they are going to continue watching her based on her current condition. We are actually encouraged by that.

Sarah has not had a fever since yesterday evening. She is taking a nap this morning. She did not nap yesterday at all. I don’t think it was because she was not tired. I think it was the endless vomiting. Now that she is back on the Reglin+Benadryl, her life is a little better. For Sarah, a little better is huge.

Susan and baby Asa (4 weeks old now!) came back to rotate at the hospital with me. I’ll be here until Wednesday or Thursday.

Thanks for all your prayers and meals and floor repair and cards and support with the children and emails…

We miss a lot of things from before Sarah’s diagnosis and would give anything to have her health fully return, but we will leave that in God’s hands and believe God is doing something beautiful in our lives. Please pray Sarah's new blood engrafts within the week and give thanks that God has given us so much love in our family.

-Ben
Ecclesiastes 3:10-12