January 22, 2013

We'd like to extend our apologies to our readers for the long delay between updates, but in this case no news is definitely good news! SD has been doing wonderfully on the lowered chemo dosages. Although he caught a cold the week preceeding Christmas, he recovered in under a week (we're used to his cough lingering for a couple weeks), and at his last clinic his ANC and WBCs were the best they've been in a long time (apart from when they shot up during his October PICU visit). In fact, they were so solid in spite of the recent illness that we've been instructed to increase one of his medications back to the full dose even though they usually wait to see three months of good counts. SD's counts have been good for two months now and it shows.

SD with his poke prize: a tiger!
These two were inseparable during the early January steroid pulse.

SD managed to escape going to clinic during the entire month of December. This allowed our family to enjoy a wonderful Christmas in Wisconsin with many family members and an unexpected extended trip into the U.P. to visit more family! With the five week break, however, comes a shortened time between his next appointments (and steroids). The three weeks have passed much too quickly. Please pray that SD's little body will continue to keep up with the medications, as this month will see him undergoing more chemo in a shorter time than he's had since Maintenance started in August.

November 28, 2012

One year ago today we received the mind-numbing news that our son has leukemia. We are so proud of him for how he has handled his treatment thus far and profoundly thankful to God for the same.

Our rosy-cheeked munchkin, enjoying the snow he's been anticipating since July.

One year down, two years and seven months to go.

November 1, 2012

It's been a busy month! After SD's 6-day stay in ICU, we returned home on Tuesday the 16th for a few days until his follow-up checkup in Grand Rapids on Monday the 22nd. Then Grandma Cleary watched the kiddos while Stephen and Mandy went to the Stratford Festival in Canada. As soon as we got back, both the kids and Stephen got sick (mild fevers, coughs, sore throats, and runny noses!) and we spent the next week closeted at home.

SD has been getting a little better the last couple of days, but we still weren't sure if he would get his regularly-scheduled spinal tap this morning. He still had a regular cough, his lungs weren't clear, and his bottom was still quite sore from his ulcer.

While we waited to hear about his counts and whether his lungs were healthy enough for sedation, the cap on SD's line fell off. This resulted in his needing to be re-accessed. They took a culture and put him on an antibiotic to protect him in case anything got in the line. Not a fun start to the day, but SD took it well, considering that he'd had a hollow needle stuck in him about twenty minutes before and was just settling in when he had to get all the tape ripped off his chest and start over again.

The doctor decided to leave the decision whether to sedate SD up to the sedation techs. Since a spinal tap is such a quick procedure they went ahead with it. We were pleased that this wasn't a wasted trip!

October 15, 2012 (Evening)

SD's counts have gone through the roof today! This is so very encouraging! His body should be much better able to start healing itself now.

His pain level has remained far more manageable today. He's been getting more independent again, wanting help with very few things and moving around quite a bit more. He is still quite touchy, but has also showered us with plenty of BIG smiles.

SD did very well during his CAT scan! Mandy was able to sit on the table with him the whole time and he lay perfectly still when he was supposed to. The scan showed no hidden abscesses! Of course, he is inflamed and has the one visible ulcer, but that is apparently improving, judging from the lessened pain and reduced redness.

SD's oncologist said that tomorrow we will "discuss a discharge plan". So far we know that SD will need to be on antibiotics at home, administered through his port using a pump. This is different from when we gave him chemo through his port, but our social worker said that a nurse from Munson will come to our house to train us how to do it. We're hoping to get him home tomorrow (although it will possibly be Wednesday) and see our little girl!

October 15, 2012 (Morning)

SD slept really well last night, praise the Lord! He got up after 10am, which was so good to see!

He seems to be in a lot less pain right now; his morphine wore off around 4am and he hasn't had any for the last 8 hours! His mood is also a bit better, and he likes his movies a little louder (indicating his headache is reduced).

At 3pm today he'll have a CT scan of his bottom to determine whether there's an abscess that is not draining. He definitely has one that is draining, but he may also have one that is not. This morning he allowed three doctors to lift his legs and touch the spot - although it did cause him a lot of pain. Yesterday that simply would not have been possible.

We're so thankful for his progress!

October 14, 2012

We learned a little more today. SD has either an ulcer or an abscess, which is why he's been so insistent on laying on one of us! This also explains why he has been avoiding stools; previously, we thought this was just due to constipation, one of the side effects of Lortab, one of his pain medications. If he has an abscess, there's a possibility it may need to be surgically lanced, which would increase our hospital stay by a few days.

Speaking of pain medications, we are taking him off all acetominophen-based meds (including Tylenol and Lortab) to see if his fever is already gone. So, SD will be using morphine as necessary for the pain (and as of now, it is necessary - he's receiving a dose as I write this).

The ulcer/abscess is probably caused by the same bacteria that started this whole thing. SD changed one of his antibiotics to another one to more effectively help his ulcer/abscess specifically.

In other news, his white blood cell counts have gone through the roof! Up until now, SD has been getting one shot in his thigh each night of Neupogen, a growth medium for white blood cells. This really helped his white blood cell count but has made his thighs very sore. His thighs and bottom have been his most common complaints of pain, with the "butterfly" (the butterfly needle in his port and its surrounding tape) being a close third.

This means that SD is no longer neutropenic, so we hope to get him out walking a bit today. There is a common area and an activity room in this wing of the PICU. Last time SD was completely bed-ridden, so he didn't get to see it. This time we're encouraging him to walk as much as possible; hopefully, he'll get to experience more of the "fun side" of the hospital. It helps that he's potty training because he often likes to walk a little each time he goes to the bathroom.

October 13, 2012

SD didn't sleep as well as expected last night. He is still in a lot of pain, even with regular pain medication. So far, he has insisted that either Stephen or Mandy be in bed with him so that he has something softer to lay on than the mattress and pillows.

Originally, we were hoping to get SD out for a walk today, but his ANC is still too low; even just going outside his door will expose him too much. So we'll be encouraging him to walk around his room instead.

We just received some more good news from SD's doctor. The bacteria has been identified, and it is one that can be treated at home! Also, SD's blood cultures from yesterday and today are negative. Once we have three days of negative blood cultures and SD's fever is gone and his absolute neutrophil counts have recovered, then we will be released home!

At home we'll have the new experience of giving SD antibiotics into his port using an actual pump. Previously, we've just given him IV "push" chemo at home, which is done by hand.

So, things are definitely looking up! We still have a few more days in the hospital (at least), probably in PICU the entire time. At this time we expect to go home Monday or Tuesday. We appreciate everyone's prayers for SD's speedy recovery!