D + 38 – Home Again

When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.

This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?

Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.

Here’s a quick recap of what transpired since Wednesday:

Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.

After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.

Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.

The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.

Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.

One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.

It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.

Day + 35 - Anything but routine

Yesterday’s short visit to the clinic has turned into a rather long trip from home. At least for Courtney anyway. After checking her lab results and seeing her platelets drop significantly, and seeing that her nausea was getting worse instead of better, they decided to admit her back into the hospital to run some tests. Dr. V said there was a chance that her symptoms and lab results could be due to Graft Versus Host Disease (GVHD). So, they wanted her to go to the hospital for a CT scan of her upper abdomen, where she’s been feeling pain the past couple of weeks, and an endoscopy to check her upper GI tract for lesions and to perform a biopsy to check for GVHD.

Her latests lab results:

Date	Platelets	RBC	HGB	HCT	WBC
1/10	65000	3.22	10.4	29.5	5.0
1/15	25000	2.58	8.2	23.8	5.5
1/16	23000	2.18	6.9	20.4	3.7

This morning Dr. V came in and shed some light on her suspicions. Apparently, the GVHD manifests itself in many ways and could be causing her to feel the way she’s been feeling lately – more nauseous and fatigued than before. She also said the drop in lab counts and the increase in nausea could be due to the Foscarnet. I asked why, if she’s been on the Foscarnet since she left the hospital, would her counts suddenly drop. She said that it can have a cumulative affect and cause symptoms and side effects after a couple weeks of being on the medication.

Her plan was to have the Esophagogastroduodenoscopy (EGD) (officially the longest word I’ve ever written or used), today and start her on a relatively low dose of steroid (prednisone) pending the results of GVHD that could take 2-3 days. Unfortunately, the doctor overseeing the procedure didn’t want to do it because her hemoglobin was too low. He said she needed to get blood beforehand. Even more unfortunate was the fact that there was no way to get blood in time to still be able to get the EGD done today. The GI doctor who visited her this morning said if it was him he would have done it today regardless. This is really frustrating because Dr. V. said that she expects Courtney to be feeling better almost immediately after getting the steroid. But now we have to wait another day before starting it.

So, after a long morning of waiting to find out when the EGD would be (she couldn’t eat until after the procedure) we finally got word that it wouldn’t actually be done today and she could eat. The rest of the day went pretty smooth as she had a nice long visit with her friend, Melissa, and had a routine CT scan. No results yet.

She did finally get her two units of blood this evening, so all should be clear for the EGD tomorrow morning. We’re hoping that if everything is good tomorrow and she’s feeling up to it, that Courtney could go back home tomorrow. Otherwise, she may be here for one more night.

We’re just hoping and praying that they find some answers and get her turned around in the right direction towards recovery. She’s really tired of feeling nausea and pain, especially when they prevent her from getting out of bed. So, while the visit to the doctor didn’t quite go as expected, we know that she’s back in the hospital for a good reason – to help get her back to her routine as quickly as possible.

Oh, one more thing. Aidan made a dramatic recovery at about 9:00 yesterday morning. When we left for the clinic at 8:45 he still felt warm and looked a little lethargic. Half way to the clinic my mom called to tell us that he was downstairs (he hadn't come down once on Monday) begging for food and acting as if he'd never been sick at all. He's been himself ever since. Thanks again for the prayers.