August 9, 2013

We are pleased to report that SD's counts came back much improved today! His ANC just broke 1000, which is still quite low, but it is 10x what it was on Friday! His WBC came in at 3000. We've received official clearance for our trip, so if all continues as it has been going, we'll be leaving in a couple days. He'll be going back on half doses of 6-MP tomorrow. As always, thank you all for your prayers and notes of encouragement!

Emma (and Grandma S!) came with us to the clinic today. SD seemed to enjoy having a playmate there for a change. :)

August 8, 2013

Someone turned FOUR since our last update!

This is a photo we've taken on every one of SD's birthdays so far; he shares his birthday with his Daddy! This might have been the last year this particular pose will be possible. :)

SD has been doing extremely well over the past month. At his 4 year wellness check-up last week his RBC count was 10.3, which his pediatrician thought was a bit low, but to us that sounded like a pretty good number! He's been doing so well in health and mood that we expected nothing but a great report at his clinic visit last Friday, which is why we were astonished to learn that his WBC and ANC were close to bottoming out. He was still on reduced doses of his oral chemo, although his 6-MP dose had been raised from 1/2 to 3/4 since his July clinic visit. It seems even that may be too much for him to handle. The oncologist ordered an extra lab drawn for a test called Thiopurine Metabolites, which they will use to see if/how SD's body is metabolizing the 6-MP and whether he can take a lower dose and still have a good outcome.

Because of the low counts SD is off his oral chemo until further notice (he did finish a steroid pulse yesterday morning, however). We'll have his counts rechecked tomorrow.

Prayer requests: that the doctors will be able to figure out the optimal dosages for SD's case, and that SD's counts will be high enough to enjoy the trip to Wisconsin Dells and the U.P. next week!

July 11, 2013

SD has been doing quite well since his hospital stay back in May! He was put on half doses of his oral chemo five days after he came home, and has stayed on half doses since then until this week.

His first steroid pulse after being in the hospital was reminiscent of the old days when he'd get highly emotional, do lots of screaming, and was in general very, VERY touchy. Yet it wasn't all bad: he was able to attend his Uncle James' graduation celebration which included a number of extended family members. Before everyone arrived, Mandy thought she was going to have to hide with SD somewhere, but once people showed up, he surprisingly seemed to perk up even though the noise around him increased. A change of scene and society will do wonders, thank goodness. :)

At his June clinic, the dosage of one of his medications was very slightly increased, but the others stayed the same. The steroid pulse that followed was more normal for these days. We don't know what caused the previous one to be so different, but we're thankful that they don't always affect him that harshly.

This week at clinic started the top of a new cycle, which means we were in Grand Rapids for a spinal tap.

SD's counts looked great, so we were instructed to increase his 6-MP dose from 1/2 to 3/4. Since he's been on a half dose of this medication for two months, we've recently started seeing glimpses of the old SD we used to know again. It's always hard to know we'll lose that soon with the upcoming steroids and increase in dosages (his steroid dose has also increased - our boy is growing!), but it is so *good* while it lasts. Overall he continues to handle his treatment extremely well. As always, THANK YOU to all who continue to pray for SD!

Just before we left clinic we asked SD's nurse about Sunday School attendance, and she gave us the go-ahead! We'll have to take it week by week, but as long as everyone in class is healthy and he isn't on a steroid pulse, he is clear to go. We are thrilled to finally be at this point!

May 23, 2013

Today, SD was in much better spirits! Yesterday he was starting to perk up, and today he pretty much returned to his normal, happy self!

We got the word on SD's counts today late this morning; his ANC is now around 2000! The doctor here and the oncologists downstate have agreed that he does not need another Neupogen shot, so that means we can go home today!

SD still has quite a cough, so he is still in isolation. However, his immune system has sufficiently recovered enough for Emma to come in for a visit. Here they are both watching Chip & Dale on the laptop.

So, this won't be our longest hospital stay, but it does qualify as our most electronic! We currently have three laptops, one iPad, and a portable Wii in our room. SD has really enjoyed playing Mario Galaxy 2 with us the last couple of days.

SD will not resume his chemotherapy immediately, though he will be on an antibiotic for a week or so. The next few weeks will be a bit rough; he'll have to go in fairly often for blood work and some "catchup" on his medications.

But for now, we're just glad to be going home!

May 22, 2013

Not much changed regarding SD's condition yesterday. He was extremely sleepy all day long and his counts had stayed about the same.

There was a severe thunderstorm warning on Monday, so Grandma Cleary waited until yesterday to bring Emma down so we could spend some time with her. We hadn't seen her since last Thursday, so we certainly were missing our sweet little Sunny! To our surprise, she decided that she was Daddy's girl during our outing, but was obviously very happy to see both of us again. :) She didn't get to see SD but at least she got to hear his voice from the hallway.

We took Emma out for lunch and a short excursion to the mall, and spent a bit more time with her again after dinner. We can hardly wait until we can all be together again!

Today (Wednesday), SD's neutrophil count came up from 0 to 37. Not a dramatic difference by any means, but it is an increase. The neutrophils need to be over 500 before he can go home. He endured his fifth shot of Neupogen this afternoon, so we are hoping that it will start taking effect by tomorrow. It's never taken this long to start working in the past, so we are rather surprised to still be here at the hospital. It's beginning to look like this will end up being his longest hospital stay ever! He does appear to be on the mend today, though. He's perked up a bit and has been able to eat a little more. Not much more, but there is a noticeable difference.

May 20, 2013 (Part 2)

Dr. Lamphere just came in with surprising news. After two days of Neupogen shots, SD's white counts have actually gone down rather than up!

When SD has gotten Neupogen in the past, it would always cause his white blood cell count to skyrocket. Instead of skyrocketing, his white count went down to around 0.7 while his ANC (an estimate of his infection fighting capability) is virtually at zero.

This is the first time we've dealt with a "neutropenic fever" without a clear cause, but the doctor acts like it's not unusual (in cancer patients). Since we haven't been able to figure out what infection SD is fighting (blood cultures are still all negative, his recent chest X-rays are clear, etc), all we can do is wait for SD to kick it and help him as much as we can. So, he's staying on a broad-spectrum antibiotic and will continue receiving daily Neupogen shots.

In order to go home, we need to see:

1. No fever for 48 hours. Check.
2. Negative blood cultures. These take a few days to check, but SD's have all come back negative so far. Check.
3. Any known cause of the infection to be cleared up. Since we haven't been able to determine an actual cause for SD's illness, he passes this one too. Check.
4. Blood cell counts trending upward. SD's are currently trending downward.

So for now, please pray that SD's white blood cells will recover and start trending up, and that his fever does not return. If he gets a fever again, we'll need to "reset the timer" on the fever and blood culture checks, spending at least another two days in the hospital.

Dr. Lamphere said there is a (small) chance we could go home tomorrow, but he has seen other cases where it took a week. As of now, we can't guess when we're going home.

May 20, 2013

SD slept *a lot* yesterday. He took three naps during the day and still slept well through the night. Around midnight he was up for about 20 minutes when the nurse came to check his vitals and administer his meds; he popped up with a big smile and asked to use the iPad. Since he wasn't going to sleep while the nurse was there anyway Mandy told him he could while she was there. He was ready to put it away shortly after she left.

Dr. Lamphere came to our room last night to let us know that no sign of pneumonia showed up on the x-rays taken yesterday. We still don't know what this is, so SD has been in isolation and under neutropenic precautions during most of his stay. This means that anyone coming into the room (except Mom and Dad) must wear a fresh gown, mask, and gloves, there can be no fresh flowers in the room, hot foods must stay hot and cold foods must stay cold... there are many little efforts to keep anything new from infecting him further.

SD's appetite has been very poor during his hospital stay. Sometimes he decides that something sounds good, but he can only eat a little bit of it. Sometimes he takes a bite and then turns it away because his taste buds are affected. We'd really like to see him able to eat more soon!

Dr. Lamphere mentioned the possibility of going home today. He didn't sound extremely optimistic about it, but as of yesterday it wasn't out of the question to consider it. He said we'll just take it a day at a time. We haven't had his blood counts checked yet today, but this morning SD's cough is even worse than it was yesterday and has been wheezing quite a bit.