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!

October 12, 2012

Last week, we had our regular clinic visit after a month of runny noses and sore throats. SD and Emma were feeling better a couple of days before clinic, so we were hoping he'd be well enough to continue regular treatments.

Unfortunately, SD's blood counts were very low, in particular his white blood cell count and absolute neutrophil count. So he went off his regular chemo but kept his regular steroid pulse for the next week. During that time he was very susceptible to illness, so we isolated him at home.

SD was supposed to get his counts re-checked yesterday morning (Thursday). However, he developed a fever overnight. After consulting with SD's regular doctor in Grand Rapids, Mandy took SD into the ER at Munson at around 6 am.

Normally, we try to be understanding of medical care providers; they have some difficult jobs, work difficult hours, and most of their clients are under a lot of stress (which makes them difficult to work with)! But I must say we were quite disappointed with our Munson ER visit. Not only did they perform a series of X-Rays (which they do about 90% of the time we've gone there, and it has never shown anything), but they also made him wait for over two hours before they even drew blood for the labs. With all of the doctors and hospitals we've been in over the last 9 months, this was an astounding and unprecedented level of incompetence.

When Stephen learned that SD still hadn't even had his blood drawn, he gave Emma breakfast and they headed downtown, ready to kick butt and take names. Fortunately, that wasn't necessary; we think they already received a talking-to from our regular doctor. By the time the whole family was in ER, they had already drawn SD's blood.

SD was in quite a bit of pain and stayed in the ER bed on Mandy most of the morning. Emma was fascinated with all the hospital equipment; she got quite upset when we wouldn't let her sit on the beds in the hallway! Fortunately, Grandma Cleary was able to come down and take care of Emma.

Eventually, we got the results of the labs back: SD's absolute neutrophil count was practically unchanged since last week. Since SD was neutropenic and had a fever, they decided to transfer him to Grand Rapids. Instead of going by plane, this time he got to go in an ambulance! Mandy traveled with SD, and Stephen joined them later that afternoon, while Emma went to Grandma's house.

Interestingly enough, we are in the very same PICU room that we were in the first time we were transferred to Grand Rapids!

SD did not sleep well that night, even though he was sleeping on Stephen. He was in a lot of pain that afternoon and overnight. We gave him some morphine at around 6pm, and he started really sleeping around midnight. Even then, his sleep was intermittent; with all the fluids he'd been getting, he had to keep going to the bathroom (SD is potty training).

Most of today has been the same; SD has gotten some antibiotics, a bit of steroids, lots of lortab (like tylenol but stronger), and most recently a red blood cell transfusion. He's been mostly watching movies and saying "tata (Stephen) hurt!"

We are still waiting on the full results of his blood cultures. He definitely has a bacterial infection of some kind, probably acquired from his own gut. There are three major possibilities right now of what we're seeing:

• He just has a bacterial infection that we can treat at home. In this case, they'll keep an eye on him here for a few days. We'll be heading home Sunday at the earliest.
• He has a bacterial infection that has to be treated here. In this case, we'll have to stay here a minimum of ten days, going home on Monday the 22nd at the earliest.
• This is a relapse of his Leukemia. In this case, we'll be here an indeterminate amount of time as we completely start over with his treatments.

Update at 5pm:

Our doctor came in at 4:55pm after calling the lab people directly. They had just gotten the results before she called: the test results indicate this is *not* a relapse of his Leukemia, merely a bad bacterial infection. Praise the Lord, and thank you for all your prayers!

SD is finally sleeping peacefully on Mandy after taking a variety of medicines.

September 7, 2012

SD went to his first clinic in Traverse City today! When Mandy was getting him ready, he kept saying that he didn't want to go to the doctor. This has been becoming more of his attitude lately, but we still aren't used to it.

When we arrived, SD was given a giant coloring book, so he colored in that while we waited. Just as we were called to go in, Mandy realized that she had forgotten to put on SD's numbing cream! Normally, we have to apply numbing cream to SD's port an hour or so before he is accessed, and we stop to do it on the way to Grand Rapids. Since we were only going across town, we didn't even think of applying it at home! Fortunately, we were able to move through our appointment with no greater inconvenience than a slight rearranging of procedures, but Mommy felt badly over the decreased time the cream had to work.

SD's ANC was only 900, but he was able to get his chemo since it isn't one that affects his counts as much. We were instructed to keep his at-home chemo at the same dosages and won't be expected back for another month. This makes us a little nervous because of his greater risk of infection and because of how he handled 6-MP in January, but so far he continues strong and active.

Stephen went back to work after the appointment and Mandy brought SD grocery shopping to prepare for the Endless Appetite that comes with steroids. When they were done and headed for home, SD told Mandy that he wanted to go back to the doctor. I guess the anticipation was worse than the fact. :)

So far, it looks like SD will have one pulse of steroids each month, beginning on the Saturday after clinic and ending Wednesday. Prayers are appreciated, as always!