May 18, 2013 (Morning)

Yesterday was the day SD was originally scheduled to go in to clinic and start his monthly steroid pulse. On clinic days, some of the oncologists from Grand Rapids come up to Traverse City for us northerners. One of the visiting doctors (Dr. Cornelius) stopped by yesterday to visit and check on SD. How kind of him to drop by before his long drive home! He gave some recommendations on steroids; they're suspecting SD's cortisone is low, so they're starting him on Solu-Cortef (this is a totally different kind of steroid than his regular chemotherapy steroid, dexamethasone).

Since we've been here, the doctors have had a difficult time keeping SD's fever down. He's currently on the steroid, some broad-spectrum antibiotics, and tons and tons of fluids! We also have a fan and ice packs on him (seriously). He has been taking Tylenol almost constantly since we've been admitted - not for pain, just to keep his fever in a reasonable range.

However, he is in excellent spirits. He's enjoyed spending time with both of us, and is cheerful to the point of silliness! Most of the staff here is only treated with a shaking of the head or a verbal "no", but SD decided he liked one of the nurses last night and started chatting a lot with her. SD has also voluntarily taken naps several times, which is quite unusual for us: he just announces he's going to take a nap, lies down, and almost immediately falls asleep!

When he was first admitted, they were suspecting pneumonia (based on the chest X-rays). However, they're not sure what is causing his fever now. The blood cultures have all come back negative (which is a good thing), so they just changed his antibiotic to one that affects more diseases. We're pretty much just waiting for whatever it is to run its course. Right now it looks like the soonest we could go home is Monday.

One worrying thing is that SD's white blood cell counts have been dropping. They were 2.4 when we were admitted on Thursday, 1.3 Friday morning, and 0.9 just a few hours ago. So they're probably going to do Neupogen today. This is not a fun one because it can't go in through his existing IV; it has to be injected into his leg muscle in multiple shots while he's held down. Neupogen is very painful for him. :(

May 17, 2013

SD was scheduled to have his monthly clinic check-up this morning, but is across the street in a hospital room instead.

He's had a cough for two weeks now. It was worst during the first week and has been fluctuating in frequency since then. On Wednesday he began complaining about a tummy ache and acted more clingy than usual, and this continued into Thursday. He woke up Thursday with a low-grade fever, and around 10 am crawled into our bed saying that he was going to take a nap. I thought he was playing around, but he actually did fall asleep; I think this was the first time he's ever done that. His temperature stayed steady until the late afternoon; upon calling DeVos about his 101.5 fever we were told to go to the hospital and by the time the phone call ended, his temperature had risen to 102.4. It was 103 when he was checked in at the ER.

After hours of waiting and blood draws and x-rays, the word was that he has pneumonia. He was given a hospital room, where I came later to spend the night. His fever lasted through the night. When the doctor spoke to us this morning, he said that he wants to see SD fever-free for a day or two and his white blood cell count going up before he is discharged. So it looks like we'll be here at the hospital a bit longer than originally hoped.

The doctor also said that he is not convinced that SD has pneumonia. He ordered more blood work for cultures; so far the cultures taken yesterday have not shown presence of bacteria, but it usually takes a couple days to be conclusive.

The nurse came in a little while ago to take SD's temperature and to give him Tylenol. His fever is the highest yet at 103.6; it shoots back up every time the Tylenol wears off. About an hour ago SD announced that he was going to take a nap and fell asleep almost right away. He's been sleeping since, waking up just enough to take some Tylenol a little bit ago.

April 18, 2013

SD began Maintenance cycle 4 today! Going into it we weren't certain whether he'd be able to have his procedures done because of the cough he's had for a couple weeks. It's been gradually getting worse over that time and he spent a lot of the night last night coughing. After listening to him this morning, the nurse ordered x-rays of his chest and sinuses to make sure sedation would be safe. Thankfully he was cleared for all procedures and everything went smoothly.

His counts have continued to improve since Monday, so he is going back on his oral chemo starting today. Some of his dosages have actually increased because he's reached a new weight bracket. He'll need counts rechecked in two weeks to make sure he's handling everything. He has gone through the whole accessing ordeal four times in just under two weeks, which is pretty hard on him; even when he just has a blood draw through his port and no chemo, it takes a lot out of him.

After clinic today we brought the kids and Grandma Cleary to the butterfly exhibit at the Frederick Meijer Garden. It was a short trip due to rain, but quite enjoyable for all!

April 15, 2013

SD is off chemo until further notice.

It all started about 2 weeks ago. It's sometimes hard to tell when SD is pale because he is such a fair-skinned boy to begin with, so we go by his nails and lips. When his lips turned pale after two days of pale finger and toe nails, we decided to have his blood counts checked.

His hemoglobin level had dropped to 8.6, so that would explain the paleness, but it wasn't low enough for a transfusion. All of his other counts were solid, which was quite encouraging; we thought that maybe he was starting to handle 6-MP at full dose at last!

DeVos wanted a recount one week later. By then SD's color had returned so we were completely surprised by the results. His hemoglobin was now 8.1 and all his other counts had plummeted into the severely neutropenic levels. Because of this, SD was taken off chemo for an undetermined length of time.

We had him checked yet again the following Monday (the 15th), and there was not much difference in his numbers, but every area had gone up. What a relief!

SD waiting for his counts on Monday.
After being accessed for the third time in ten days, he's rather weary of it.

March 16, 2013

SD has been doing really well since our last update. At his January 24 clinic he began Maintenance Cycle 3 (Maintenance is made up of 12-week cycles, with a spinal tap at the top of each cycle). His chemo dosages stayed the same because his hemoglobin count had decreased just slightly since his previous clinic, but everything else looked good.

SD was so hungry when he woke up from sedation that he was scarfing down his favorite treat with both hands!

At his February 15 clinic we were instructed to resume full dosages of everything! We actually have mixed feelings about this because he has never done well with the 6-MP at full strength, but we are excited that he's been healthy enough for long enough that the doctors want to try again.

SD likes to be the leader when we walk anywhere. Maybe because he's the first to reach buttons that way?

At his March 15 clinic, SD's counts came back quite a bit lower than their previous level. We expected this because of the change in chemo, but are hoping and praying that they have reached their lowest point. It'll be five weeks before his counts are checked again unless he gets very sick or shows signs of needing a blood transfusion, and obviously we would like neither of those things to be necessary! So far, even with his lowered counts he has remained energetic and playful, but he appears to be coming down with the cold his little sister has had this week, which seems to be affecting his mood and comfort a bit the last couple days.

Prayer requests:

1. That SD's body will handle the full doses of chemo from here on out or that we'll quickly find out the right dosage for him.
2. That if he does end up needing a transfusion, we'll recognize it. Last time he needed one we were shocked because he was happy and energetic and appeared as healthy as could be expected at the time.
3. That the steroids he's currently taking will not affect him too harshly. While he was on the lowered doses of methotrexate and mercaptopurine (6-MP) he handled the steroids surprisingly well. Last month was not quite so easy because he had gone back to the full dose of methotrexate, and now he is on the full dose of 6-MP, which is not something his body takes to.

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.