November 30th, 2011

Today SD was in some pretty severe pain. He had been on Tylenol pretty much constantly so far, but today we had to step it up to morphine. The Tylenol just wasn't cutting it.

In this picture, SD is sitting up watching a movie. He wasn't able to sit up most of the day, and would just lay back on his bed watching a movie instead.

He was very irritable today. Of course, he was in so much pain... He wouldn't allow us to read to him, or talk, or touch him (except he would want his hand held when they took his blood pressure). He had a pretty bad headache, including light and sound sensitivity. So we spent pretty much the whole day just watching movies with most of the lights off and the volume really low. Also, he didn't want to watch any of his favorite movies (which we brought along on the laptop); he only wanted to watch movies on the big hospital TV. So he got to see some movies we wouldn't have normally allowed, such as "The Adventures of Elmo in Grouchland."

Throughout the day today, SD would almost constantly say "foo," meaning that he was hungry. But no matter what we offered, he could not eat it. He would get agitated when we didn't offer the right food (and there didn't seem to be a "right food"). If we kept offering different foods, he would only get more agitated. So after a while we settled into a pattern:

SD: "Foo?"
Stephen: "Do you want some <type of food we had>?" (showing it to him)
SD: (agitated) "No! Foo!"
Stephen: "Okay." (does not offer more food)

SD would usually repeat the routine until we had cycled through every type of food we had there, and then would lapse into silence for a few minutes. This continued throughout the day, unless SD was sleeping or had found something he could eat at the moment.

However, he did hold hands with Mandy to pray over his food.

November 29th, 2011

SD was in a lot of pain this morning, so he got some morphine and then slept more restfully. Up until this point, Stephen had been in a bit of denial - but after seeing SD get worse even with two blood transfusions and breathing treatments, it was obvious that there was no mistake in the diagnosis. He was not going to get better on his own.

SD wasn't allowed to eat or drink anything after midnight because at around 11 am, he had to be sedated to place a port put into his chest. This is a device that is like a permanent IV.

While he was under, they also did his first spinal tap. This is a procedure where doctors access his central nervous system by inserting a needle in between two vertebrates in his back. They withdrew some of his spinal fluid for testing and also injected his first dose of chemotherapy (directly into the spinal fluid).

This is the first step on a long road of chemotherapy that we are told will last about three years.

Overall, SD's procedure this morning went well. It was a lot for his little body to go through. After he was sedated, Stephen and Mandy went out in the hallway, and then we heard him cry out. We think he may have felt the tube they had to put down his throat. They ended up taking over his breathing because he was pretty congested. The doctors also suctioned out 1/4 cup of mucous from his nose and throat.

SD also had some trouble coming out of sedation. The nurses felt he needed too much oxygen, and they had to keep suctioning him by placing a tube through his nose and down into his throat. His recovery from sedation was difficult enough that he was transferred back into the ICU for a few hours so they could monitor him closely. But after a good sleep and a bit of food, he perked up more than we'd seen him in days.

The port has already made life easier for him, although he doesn't realize it. He had a couple more treatments tonight (chemo and steroids) and needed some Tylenol around 9:00 pm. We are thankful he's feeling well enough not to need more morphine.

SD had his first visitors today: Pastor and Mrs. Biggs drove all the way down from Petoskey (about 3 1/2 hours, one way)! They arrived while SD was getting his procedure done, and stayed with us while he came out of sedation and were placed back into ICU. Pastor Biggs prayed with us and SD's doctor before he left.

While they were in the waiting room, they also had an opportunity to do a bit of marital counseling - for some complete strangers. That's my Pastor - he just can't stop! :)

November 28th, 2011

SD had a bone marrow draw this morning to determine for sure whether his affliction is a viral infection, Leukemia, or some other problem. His hemoglobin (red blood cell) count is up from 5 to around 10 after the two transfusions yesterday.

He normally does not need the oxygen going into his nose. It is only necessary because he was sedated for the bone marrow draw. SD was intraveneously sedated, and we were very surprised at how quickly it happened! Mandy was holding him, and within just a few seconds of starting the medication, SD's eyes shut and his head just drooped!

SD improved enough so that he was transferred out of ICU this afternoon and placed into a regular room.

The results of the bone marrow test were long in coming. We were told they took their time and made absolutely sure they were correct.

We received the diagnosis this evening: Acute Lymphoblastic Leukemia, B-lineage, unknown subgroup at this time (but not mature-B). This is the "most favorable" type of Leukemia, with a success rate of over 85% and only a 10% chance of coming back later in life.

SD's chemo will begin immediately, with a spinal tap in the morning.

November 27th, 2011

At around 3:30 am, Stephen took SD in to the ER at Munson. SD had been there several times before; he is susceptible to respitory illnesses. The symptoms this time were different, though.

After an hour or two, the doctors there decided to fly SD down to the Helen DeVos Children's Hospital in Grand Rapids. He had a number of conflicting symptoms, but the deciding factor was that both his white and red blood cell counts were low. His red blood cell count was 5, and around 13 is normal. They were suspecting Leukemia.

While at the Munson ER, he received a shot of steroids (which is pretty much standard for the respitory problems he gets), and that seemed to clear up his drooling. By the time they were on the plane, he was already doing better.

Mandy, Emma, and Grandma Cleary drove down this afternoon while SD was getting his first blood transfusion. The red blood cell count came up to around 7, so they gave him another one later in the evening.

At this point, the doctors thought that it was a virus that had settled into SD's bone marrow. They didn't rule out Leukemia, though; it seemed like every test was inconclusive.

Thanksgiving

SD had had a cold off and on for quite a while. So on Thanksgiving, we weren't too alarmed when he got a runny nose and didn't want to eat as much as normal. He did try pumpkin pie, though, which was a great hit!

Friday afternoon, SD started drooling, and had developed a nasty cough. It didn't clear up overnight. We had originally planned to get a Christmas tree on Saturday, but with SD under the weather we just hung around at home.

SD didn't walk at all on Saturday; he was weak enough that we carried him from his crib to the couch, where he watched movies most of the day, or cuddled with us, or watched us clean up. He was drooling constantly, which seemed to embarrass him. SD was mostly unable to swallow, but he did take some Tylenol during the day, and some Advil at bedtime.

Stephen decided to give him one more night to see if he could get well by himself. However, SD was unable to sleep. After getting SD out of bed at 2:30 AM, Stephen consulted with the nurse on call, and decided to take SD into the ER. They left at 3:30 AM, arriving at the Munson ER shortly after 4:00.

A Worrisome Wedding

On November 4th, our family left for a long trip. After a Saturday stop in Grand Rapids, we continued to North Carolina. Stephen worked at a job site that week, and on Friday morning we all went down to Georgia for Stephen's cousin's wedding.

That Saturday (the 12th) was a long day for everyone. There was the wedding, of course, in which Stephen played violin and SD cheered; and a reception that lasted well after dark.

SD was pretty much his normal self, though he was getting tired. After the reception, he was pushing the baby stroller around (one of his favorite ways to help), and then suddenly laid down on the ground and refused to walk any more.

We figured he was just exhausted, so we mostly carried him around as we got back to our hotel.

When we got back to the hotel, SD still didn't feel up to walking, so we let him lay on the bed and watch Swiss Family Robinson. He likes making the animal sounds for the animals in that movie.

That night, SD woke up almost hourly, crying out "ow"! But he always went back to sleep quickly.

The next day, we went to the Georgia Aquarium after church. We noticed that SD didn't want to put weight on his right leg; we thought that he may have slept on it funny. So we borrowed a stroller from a cousin and let him stay in that all day.

He liked these fishes.

SD was held at various times, but he did seem rather uncomfortable. He preferred the stroller.

Although he perked up a few times throughout the day, he mostly just acted exhausted. We figured that we had been on the road for over a week, he hadn't slept well, and he may be coming down with something.

One of the last things we saw were alligators. SD has a strange fascination with this particular animal. Even though these ones were white and barely moved, he really enjoyed watching them.

The next day SD still could not put weight on his right leg. We took him into a local urgent care. They did some X-rays but could not detect any fractures or anything. They recommended we see a pediatric orthopedist when we got back home.

Each day on our travels home, SD improved a bit. We got home on Wednesday, November 16th. He saw his regular pediatrician the next day. The pediatrician believed it was some bacteria that had settled into the joint and that he would probably continue to improve by himself. He was walking just fine by the weekend.

As of now (December 1st, 2011), the doctors are unsure whether this leg problem was caused by his Leukemia. Like many parents, we always wonder whether we should have done something differently. Should we have done a blood test? Did the X-rays cause the Leukemia to start? However, questions like that have no answers. We are where we are, and God knows what He's doing.