December 28-30, 2011

Wednesday was SD's first day completely without steroids. He certainly wasn't back to his normal self, but there was already some difference. We noticed his voice starting to change. The steroids had made SD's voice higher and whinier; on Wednesday it was squeaky, but not as high as it had been.

SD showed a lot of improvement on Thursday! He started noticing his surroundings a lot more. He noticed there were several gifts still under the tree and wanted to open one (we saved most of the kids' Christmas gifts until SD was in a better mood). He not only smiled but laughed when he felt snow on his fingers. That was his first laugh since before Thanksgiving, so we were elated when we heard it!

He did develop a strange sort of diaper rash, so Mandy took him into his regular pediatrician. SD was aware that we were going to the doctor's office (he started saying "no" when they turned onto their road). He also started saying "papa" when they parked; "papa" in SD-speak means "train" (derived from the sound of a puffing steam locomotive), and in this case it meant he wanted to play with the train in the doctor's waiting room. While he was there, he also checked out a book he had previously enjoyed (particularly the pictures of cupcakes), and pointed out a rocket ship drawing on the wall.

These may sound like little things, but they are very encouraging to us - SD is definitely returning to normal! He started some antibiotics, so he's got more medicine again, but at least he's off the ones that mess with his mind!

On Friday, the big news is that SD smiled and laughed while playing with Mandy:

In other news, we realized we had an egg problem. Before Christmas weekend, SD was going through eggs at a pretty good pace - scrambled eggs, french toast, etc. Stephen bought a bunch of eggs the week before Christmas, and our guests also brought eggs... just in time for SD to pull a reversal and have nothing to do with them. Friday morning we realized we had 91 eggs in the 'fridge. Yes, ninety-one eggs. So we had two completely new dishes for dinner: frittata and German pancake.

December 26-27, 2011

SD was sad to see our company go. He even let Uncle Josh hold him for a long time! This is rare these days; it's apparently painful for him to be held for more than a minute or so, so he usually just stays on the couch. He sure wanted to hug Uncle Josh, though, for a good long time!

After saying goodbye to all our visitors and Emma on Monday, we headed down to Grand Rapids. We arrived around 8 PM, anticipating a restful evening and intending to retire early. That did not even come close to happening! The effects of the steroids were at their height that night, causing the usual hunger, frustration over not finding foods that appeal to him, separation-from-Daddy anxiety, and screaming fits, but more intense than we'd seen so far. SD finally got about an hour or two of sleep starting around 10 PM, but woke up hungry and fixated on cheese at midnight. It was an NPO night, meaning that he could have nothing to eat or drink after midnight in preparation for his procedures in the morning. Once the screaming began, there was no letting up no matter what we tried. This led to the rather embarrassing (though not surprising) phone call from the front desk at 1:30am, resulting in both Stephens staying up basically all night in the family room downstairs.

Stephen took SD back to our room just before 6 AM. SD got about an hour of sleep while Stephen and Mandy got ready for the day. While it was not much, we were glad to see him finally get a little rest.

Running on hardly any sleep, an empty stomach, and 29 days of steroids, SD had a rough morning. When we got to the clinic, our nurse told us that before his port could be accessed, the doctor down in sedation wanted to take a look at the port site. So we went down to the basement, where the doctor said the port site looked fantastic and finally took out the stitch that SD is always asking about. SD did not like that experience at all. He didn't like being in the hospital, period. He didn't like that we wouldn't give him food or water. He didn't like having his port accessed. Or having nurses anywhere near him. Anything that he didn't like made him scream.

On the bright side, SD's actual procedures went quite smoothly! While he never likes having his port accessed, he allowed the nurse to poke him while sitting in his stroller. It was his first time not being held during that part; he seemed to prefer sitting right where he was. After last week, I think we were all holding our breath to see how the blood draw would go, but there was no trouble with the line this week. And his counts are looking good!

SD had a spinal tap with IT chemo and a bone marrow aspiration, which was the reason for the NPO. We won't have the bone marrow results for another day or two.

After he woke up from his sedation, SD naturally wanted to eat, but we couldn't find anything that he wanted. More screams ensued. This brings us to the most exciting news of the day, the event we have been waiting for all month long: SD received his LAST (long-term) dose of dexamethasone!!! It'll take a few days to leave his system, but this completes the induction phase of treatment. We are thrilled to have the first (and supposedly the hardest) part behind us!

When we were done with our clinic visit, we ordered pizza from a cafe within the hospital because it was the only thing that SD wanted the entire day, picked up some medication refills at the pharmacy, and went home. Stephen drove the whole way after a night of no sleep (with a brief stop for a cat nap along the way). Mandy thinks he's Superman.

SD now has a nine day break from any chemo meds. He has to keep up on the "lesser" medications, but we are enjoying not administering the vile-tasting one to our poor, brave little boy who has done amazingly well taking his medicine, even at the end of his induction. We are SO thankful for his cooperation.

One concern we currently have is that SD still is not walking. We talked to the nurse practitioner about it yesterday, and she said that they sometimes see this as a result of the steroids in combination with vincristine (another chemo drug SD gets weekly via his port). She expects him to start voluntarily moving around this week as the dexamethasone wears off. However, if he doesn't start walking, or at least crawling, within the week, he'll need to start physical therapy. We would appreciate prayer that he will start getting more active on his own. We are sure that he would not be thrilled to have to start seeing yet another doctor.

December 24-25, 2011

Saturday was a pretty normal Christmas Eve. We all did some last-minute shopping (horray for our local Cherry Republic - I can only imagine how much money they made this last week). SD started craving pizza, an obsession that would be continued through Christmas and beyond. SD has been sleeping a bit better, though he has multiple diapers per night and sometimes wants one of us in his room for a while to comfort him.

We kept debating whether to bring SD to church on Christmas. He was getting more pale this week, but got a lot of color back on Saturday. He was still weak, but his immune system at his last checkup was the strongest it's been yet. However, we decided to keep SD home just because of the personality-influencing side effects of his dexamethasone. He's just not himself; and we felt it would be better for him to go to church on New Year's, after he had been off that drug for several days (his last dose is Tuesday morning).

So, Christmas Eve was average. It didn't really feel like Christmas Eve. Christmas itself was a different story.

We are hoping this was the worst Christmas ever.

OK, it wasn't that bad, but it was bad enough. Among other activities, we tried to get some cute pictures of SD and his sister in their matching gingerbread outfits - you can see how well that went...

SD was also not interested in hearing the Christmas story. It took several attempts to get through it.

He did take a fleeting interest in two of Mandy's gifts: a musical Charlie Brown scene, and a set of ice cream bowls. Other than that brief time, he completely ignored all of the presents. After offering him several presents to open (and being loudly rejected), we decided to keep his presents until next weekend.

Our present-opening time was regularly interrupted by whining and screaming. Our visitors were not as used to that atmosphere as we were, so we felt bad for their Christmas morning. They were very understanding, though!

We are so thankful for Grandma Snell, who slaved most of the day making a wonderful Christmas dinner! We all enjoyed it except for SD, who only wanted pizza. We refused to give him pizza all day, which frustated him.

As usual, Emma provided a bright spot. She so enjoyed opening (some of) her presents! Everyone enjoyed being around her!

It sounds funny to say this, but we hope to look back on this as our worst Christmas ever.

December 22-23, 2011

Reinforcements have arrived. Grandpa Snell came down Thursday night, and Grandma Snell and Uncle Josh late Friday night. It sure helps to have other people around to assist with SD!

These days have mostly just been more of the same. SD barely slept Wednesday and Thursday nights; we tried giving him Tylenol, but it didn't seem to help much. He kept waking up a lot and got anxious quickly if we weren't right there. Mandy stayed with him Wednesday night, and Stephen stayed Thursday. Holding SD's hand was about the only comforting thing we could do.

SD's speech is still quite slurred, though he is using some phrases; here's an example of his speech at this point:

Stephen and Mandy are the only ones who can currently understand him, and even we have difficulty.

SD is still miserable all the time. This week his upper chest, neck, and jaw seem to be bothering him more. We suspect the jaw pain is a side effect of the vincristine. We're (literally) counting the days until he's off the dexamethasone; its side effects are cumulative, and they're gradually getting worse. These include irritability, sleeplessness, food obsessions, and nervousness.

However, once again we are reminded that others have it worse. The hospital gave us a great book called Childhood Leukemia, which has been a tremendous help! One nice aspect of that book is that they include hundreds of testimonial excerpts from parents (and children) who have experienced childhood leukemia. These show how different children have an almost infinite variety of responses to treatment. This week we read the section about dexamethasone side effects; even though our situation isn't easy, it's better than what Katy's parents had to go through:

When she was on steroids for a month straight, she hallucinated horrible things. She'd scream that boys were chasing her or that her heart had stopped beating. She'd sob that I was melting and would disappear. She'd dig her fingers into my arm begging me to help her. She sometimes did this all night, and nothing consoled her. She slept very little while taking steroids. She spent day after day and night after night in my arms while I rocked her...

We are so thankful that SD is doing so well! He has a difficult time, but on the whole is rising to his challenges; and his cancer is reacting well to the treatment, too.

In other news, Emma started walking Thursday night! She has been such a joy through this trial - starting in the hospital and continuing even now. She stays cheerful, and helps our spirits as well!

December 21, 2011

SD is still inconsolable most of the time. The same two movies are in an infinite loop.

SD got his first real bath since the morning his port was put in today. His port site has been healing nicely, and we were given the go-ahead to bathe him during our last clinic visit. We always have to wait 24 hours after his port has been accessed (which is every time he goes to the hospital), but we are happy that we can finally get him properly clean again! We've missed that velvety just-bathed skin.

SD received a couple of books from Grandpa Cleary today - and he actually took an interest in them! He has only wanted to be read to twice since coming home, but when he caught a glimpse of the brightly colored cover with animals - including an alligator - on it, he reached out for the book with an enthusiasm we've only seen him muster for his favorite foods since coming home. He looked at the book eagerly while loudly repeating the phrase "Ah wah foo" (I want food). When Mandy came back with toast a few minutes later, he almost excitedly showed her the "baas" on one of the pages (he refers to most animals by the sound they make. Dog is the one exception so far.); such encouraging progress!

Unfortunately, Emma has started screeching. She's been observing how SD whines and cries and (usually) gets his way, and seems to be testing how it might work for her. We hope both children will not have trouble unlearning this sort of behavior after SD is done with his mood-altering drugs.

Speaking of which... only six more days of Decadron! Hopefully it won't take too long to leave his system once he stops taking it.

December 20, 2011

SD has had a growing concern about his port and stitch (he has a single rather large external stitch that should eventually fall out on its own). SD can't see them very well, but he kept feeling around them and crying. Stephen brought him a mirror this morning, intending to show them to SD and talk about them; but SD started screaming and buried his head in the couch, refusing to look into the mirror.

By the time SD gets his port taken out, he will have had it in most of his life. There's a pretty good chance he won't remember not having it. Hopefully getting it removed won't be as big of an adjustment.

Today was a trying day in general. SD refused to eat anything but toast, some french toast, chicken nuggets, and of course string cheese. He continuously complained about being hungry. He spent most of the day crying or whining, but it's not clear whether he was in pain or just anxious.

We made SD walk (with assistance) a little (about 6 feet) after dinner. He screamed the whole time and cried for quite a while afterwards. His meds cause muscle weakness, nausea, dizziness, bone aches (including slight osteoporosis), and numb/tingling feet. We're not sure which of these bother him the most, but we have to make him walk to keep up his strength.

SD has only wanted to watch two movies the last few days. When one is done, then the other one must go on. When the second one is done, he only wants to watch the first one again. The two movies of choice are 101 Dalmations and The Happiest Millionaire - or, as SD calls them, "dog" and "arrgh" (the sound an alligator makes).

Recently we have noticed again how SD is regressing in his speaking. SD's vocabulary this month is a lot smaller than it was before. More than once he's had to pause and strain to remember a word. When he does speak, it's usually single words (no phrases). He is also lazy in his vocalization. This increases the difficulty of communication.

There are only three things that make him excited: cheese (of course), ranch (of course), and snow. We're not sure if SD remembers snow from last year, but he sure likes it now!

We don't have any pictures or movies from today (it would just be crying or screaming anyway). So here's a video from Sunday, when SD wanted to help Mandy vacuum! Normally he is scared of it, and Mandy will vacuum while Stephen distracts SD in another room.

December 19, 2011

Praise the Lord, SD is in remission!

At our clinic visit today, SD was declared officially in remission (and it turns out he's been in remission for a week)! We are elated over the news, but of course there's still a long road to go. We are now praying that SD will stay in remission.

"Remission" does not mean "cured." Acute lymphoblastic leukemia is a type of blood cancer where some immature white blood cells ("blasts") do not grow into maturity but rather reproduce more blasts. For this type of cancer, "remission" means that the leukemia cells cannot be detected in the bone marrow, the blood counts are within a normal range, and there are no other visible symptoms of the disease.

In SD's case, his most recent spinal fluid draws also show no leukemia.

There are usually about 100 billion leukemia cells in a child's body at the time of diagnosis. 99.9% of these are killed during the first month of intesive chemotherapy. This reduces the cancer to the point where it's undetectable (remission), but there are still an estimated 100 million leukemia cells that must be killed in the next few years.

If you're interested in more information, the American Cancer Society has a Childhood Leukemia Guide - just remember that SD has ALL (Acute Lymphocytic/Lymphoblastic Leukemia).

We specifically asked the nurse about what "remission" meant for SD, and whether he could be considered in remission. She did some calling and confirmed that yes, he is considered in remission already! Praise the Lord!

His blood counts were good, too! His hemoglobin continued to drop below 10, so he's somewhat anemic, but not to the point of needing a transfusion.

Even though we received this wonderful news, our clinic visit wasn't exactly the smoothest. SD had one of his least restful nights Sunday night, waking up several times throughout the night (usually wanting to get up and eat). He wasn't wild about going into the clinic, either; we are hoping that he doesn't get a lasting fear of doctors/hospitals as a result of all of this during his early years.

They had some trouble accessing his port today. The "accessing" is usually a simple matter of sticking the port with a pin and drawing blood. Today the blood wouldn't come out; the nurse said that it's not unusual, especially when children are on steroids. What actually happened is that the blood in the tube clotted - this is the tube in his chest that goes from the port into his vein. They placed a blood thinner of some kind into the port (just into the tube, not his blood stream), gave it 30 minutes, and then drew it back out. After that, they were able to draw blood without any problem.

Unfortunately, this increased the time we were in clinic, and SD just decided he had had enough. He was sick and tired of that place. He started screaming until he tired himself out, then rested for a bit, and then started screaming again. This cycle continued until we left.

On our way out, we ran into Amanda, whose son has a more serious kind of cancer than SD. Every time we go to the hospital, we are reminded that ALL really isn't that bad.

Praises:

• SD is in remission!
• We only have one week of Decadron remaining. We are looking forward to getting rid of those side effects! After the 27th, SD will not have any Decadron for at least a month, and he'll never have it over such a long period of time again.

Prayer Requests:

• SD will stay in remission.
• SD will not get sick this week, so that we'll be able to bring him to church on Christmas. That would be a wonderful Christmas present!

Weekend of December 17th, 2011

We had some company arrive on Friday: Grandma Snell and Uncle Josh came for the weekend! We had a great time together! SD seemed to remember them, but he just wasn't very sociable.

We all slept in on Saturday. Emma was acting incredibly cute (showing off some for Uncle Josh). Grandma Snell babysat both children while we went Christmas shopping. This was the first time since the hospital that SD was separated from both of us at the same time - he took it really well!

SD is already tiring of the few foods he's willing to eat. Honestly, he would eat just cheese if we let him. String cheese, to be specific.

We got our Christmas tree decorated! Stephen actually fell asleep in his chair, so Mandy and Uncle Josh decorated it. Grandma Snell and Uncle Josh left Sunday afternoon, but we expect them back next week for Christmas!

Stephen took Emma to church Sunday morning; she'll have a series of babysitters while we go down "to clinic." We are very thankful for all of the people who have babysat her!

Uncle James and Uncle Cory came back with Stephen to spend the night; that was the first time SD had seen them since the day after Thanksgiving. He still wasn't feeling very sociable, unfortunately.

We are still hoping that SD will be able to go to church on Christmas! For this to happen, he will need good counts at the clinic tomorrow and no infections for the rest of this week.

Week of December 11, 2011

Sunday night we all went back down to Grand Rapids for SD's bone marrow draw and IV chemo Monday morning. We got the results of the bone marrow check a couple days later: there was no leukemia found! While this is a good result, it doesn't necessarily mean the cancer is in remission; it is likely still detectable in his spinal fluid at this point. SD normally has some apprehension when going to the hospital, but it seems to be growing; he is probably starting to realize that he will be seeing doctors a lot more often now.

We were blessed to receive a Christmas tree on Sunday just before we left; one of Stephen's coworkers gave us the tree and delivered it to our house. So far, the tree only has lights on it, but we're planning to put on the rest of the decorations shortly. Both of the children really like having the tree here!

Tuesday was the best day home so far. SD walked a lot (where "a lot" means more than any other day; probably 20 feet or so). He also asked several times to use the potty, and followed through! When we were in the hospital for a week, the doctors told us to just forget potty training for a while; SD would have so many new and different things happening to him (and affecting his body) that it's normal for even fully potty trained kids to regress and lose it.

SD also requested a book, which is big news! We have been concerned about how much he just wants to sit and watch movies (101 Dalmations is the current favorite). After reading the book, he asked for a "ride." He doesn't have a wagon, so we have given him rides in a cardboard box; both he and Emma used to love it! They would especially enjoy riding together. Unfortunately, SD was moody and did not want Emma to ride with him (the box was too small for both of them anyway). Emma was disappointed and cried; she doesn't understand why SD doesn't want her around anymore.

SD changed a bit after Tuesday. He has been in more pain and less active since then, but his appetite has grown. SD is normally a big eater, and the doctors warned us that his steroids would make him eat even more! Wednesday was the first day we saw that kick in; SD ate more than normal (which is already a lot). He only wants to eat a few things (cheese and ranch, and occasionally eggs and toast); we try to balance his diet out a bit, but he's very ornery about his food. One good thing is that he's feeling good enough to be ornery! It's not great fun, but it's better than him trying to lie perfectly still from the pain and fed through an IV. We got enough of that in the hospital.

Wednesday night SD asked for "Mommy" to put him to bed. Throughout most of this, he's been glued to "Daddy" - perhaps because Stephen took him into ER and rode down with him on the plane on that first day. It's nice to see him (very) slowly returning to normal! Every little step is celebrated. He also enjoyed looking at a snowglobe; those have always been fascinating to him.

Thursday afternoon SD started having some more pain in a particular area, to the point that we called the on-call doctor. It's hard to describe symptoms of a two-year-old; SD doesn't have the vocabulary to articulate well, so we do our best to interpret. The doctor said to just have him checked out in the morning, so we gave SD some Tylenol and put him to bed.

Friday morning Stephen was gone to a funeral, so Mandy took both the children with her to SD's regular pediatrician, Dr. Mulder. This was the first time Dr. Mulder had seen SD since before we were in the hospital. It turns out that the pain wasn't from an infection; SD had some tests done and they all came back clean. They can't say for sure what it was, but they're thinking it's a lower abdominal pain possibly caused by the steroids. Emma also got a quick checkup; she's had a cough for quite a while and we wanted to make sure it wasn't anything serious (it wasn't).

SD's Chemo Details

There have been some questions about SD's chemotherapy. So here's some details about his treatments; we've been learning this as we go along...

The full cancer treatment plan lasts more than three years, and is split into three major phases:

• Induction - the first month (December) is induction. During induction, the leukemia is attacked with some very strong drugs. The goal at the end of the first month is to have the leukemia go into remission (meaning that it's no longer detectable - though it is still there).
• Consolidation - the next few months are considation. The leukemia is attacked with a variety of other drugs, changed every few days; the idea is to wipe out the majority of the remaining leukemia cells. Since the leukemia is already at an undetectable level, the goal is just to prevent relapse.
• Maintenance - the longest period (about three years) is maintenance. There are still regular chemo treatments through this period, hopefully killing every last cell of leukemia. Again, the goal is to prevent relapse.

After maintenance, SD will have a year of monthly checkups, to make sure that the leukemia does not relapse. If the leukemia stays in remission that year and the following year, then SD will be declared cured.

The cancer treatment plan is always subject to change, depending on how the cancer behaves. At any time, if the cancer relapses, we may have to repeat parts of the treatment. So, the three years and a few months is the "best case" scenario.

The details of the consolidation and maintenance phases are going to depend on how the induction phase goes, and how the cancer reacts. We're currently about halfway through the induction phase, and this is what SD is dealing with right now:

• SD is getting one kind of chemo twice a day (morning and evening).
• He also takes two to four other medications, depending on the day of the week. These are to handle side effects of his chemotherapy.
• There are four other medications that are taken only as needed. Again, these handle side effects, but they aren't needed regularly.
• SD takes other chemotherapy drugs weekly at Grand Rapids. We have to travel down there any time he needs chemo inserted via IV (into his bloodstream) or via IT (into his spinal fluid). All of his at-home medications (chemo and others) are taken orally.

December 10, 2011

We've been home for a few days, now. SD is tired all the time, but at least he's home!

We went to our first outpatient clinic on Thursday. SDs counts are gradually improving; he's making his own blood now. That was the first time he had his port accessed. He was so brave that they gave him a Thomas hat from the "poke box."

The blood test took a while, so we had to stay there for a few hours. SD did not want to play in the activity room; he rested on Stephen instead. Stephen stepped out at one point and tasted the blue raspberry slushie that they had there for the patients. It was gross.

We had a chance to talk with SD's primary oncologist while there. She talked some more about how they found a small amount of leukemia cells in SD's spinal fluid, which slightly increases his risk of relapse. It was such a tiny amount that she is not changing his treatment for this month of induction; she wants to see how his body responds to current treatment and base any possible changes off that. Stephen asked about the possibility of using radiation therapy, which she was strongly against, to our relief! However, if SD does relapse, radiation would probably be considered. We are praying for him to reach remission and stay there.

Our Pastor's wife (Mrs. Biggs) babysat Emma while we were in Grand Rapids, which Emma seemed to enjoy immensely. Mrs. Biggs also made dinner for us, and even did a bit of cleaning. What a blessing! When we arrived back home, there were a few plates of cookies for us. One was from a Christmas party the mixed ensemble Stephen and Mandy are a part of had while SD was in the hospital. There were also more presents for SD from a couple very good friends.

Shortly after Mrs. Biggs left, SD vomited. It was primarily because he was trying to swallow a prune whole. We gave him some nausea medication and he seemed to return more to normal. Unfortunately, he had to go without his ball blanket while it was washed and dried.

That night, SD gave goodnight kisses for the first time since he went to the hospital. He normally does not want to go to sleep until he kisses everyone, so it was encouraging to see another step toward normalcy.

SD's daily chemo medication is mainly responsible for changes in his personality and mood. Fortunately, he only has to be on it for the first month, with 4-5 day returns over the course of treatment. We have been assured that he will return to himself once he stops taking that medicine. One unexpected change in SD is that he still does not want to read. The doctor was surprised when we told her of this, but thinks that he'll come around soon. We look forward to that day!

Another difference in SD we've noticed is that he's become truly attached to an object. He's had favorite toys before, but has never really shown an attachment until the ball blanket came along at the hospital. He has never agreed to sleep with a blanket before, but now he doesn't want to go anywhere without that blanket, and even lets us put it over him in bed.

His next clinic is on Monday morning, which will include another bone marrow aspiration and some chemo given via IV (into his port).

SD is having some more trouble eating, and also taking his medicine. There are some sores in his mouth or something that makes it painful.

Our primary prayer request at this time is that SD's cancer will go into remission and that it will stay in remission. If it does, then the chemo he now has will be all that's needed, and in a few years it will be all over. If the cancer does not go into remission, or if it does and then comes back during his chemo, then we'll be forced to consider stronger chemo drugs and/or radiation therapy. Both of those choices have much worse long-term affects, some of them very scary.

December 6, 2011

We're so glad to be back home, though some things are very different. It seems to us (and to him) that SD has a lot of medications to take, but the nurse who set up his schedule said it really wasn't a lot.

SD was quite cuddly today. He's strong enough to walk on his own without any difficulty, but he's very dizzy. Dizziness is one of the side effects of one of his daily medications.

Mandy and Grandma Cleary went into town today to pick up our other car from the ER and get some groceries (a lot of our supplies spoiled). We are heading back to Grand Rapids on Thursday for a checkup.

Grandma Cleary returned to her own home tonight. We are so thankful for all the help she's been! She took a lot of time off work and was so much help over the last week!

December 5, 2011 (Evening)

We are home, praise the Lord!

We were able to leave the hospital at a good time, getting home a little after 10pm. SD took the trip home pretty well; his only hard time was when he woke up as we were grabbing dinner. As usual, he wanted to eat but wasn't able to. He acted a bit uncomfortable in his car seat, but went back to sleep not long after we got back on the road.

The only other exciting thing about our trip home is that, while we were on the freeway, the alligator balloon suddenly popped with a loud bang! At first, we weren't sure what it was, and Stephen was pulling over to the side of the road when we discovered it was just the balloon and not anything important with the car. SD slept right through it.

We had turned our heat down at home, so we spent the first couple of hours there just getting warm. Shortly after this picture was taken, SD was changed and put in bed. He wasn't excited about having to go to bed, but he took it pretty well. Normally at home SD sleeps on his belly, but tonight he slept on his side.

At first when we got home, it felt like the whole ordeal with SD's sickness was finally over. But we realize it is only beginning.

We established a "medicine cupboard" for SD. With five regular medicines (four or six doses a day, depending on the day), and four other "as-needed" medicines, we needed some organization. On the door of his medicine cupboard, we posted his medication schedule and also a register for us to keep track of when he gets what.

December 5, 2011 (Day)

Last night, SD had some discomfort, which made it somewhat difficult for him to fall asleep. Mandy spent the night with him, and gave him some medicine to help with his discomfort around 1:00 AM.

SD's procedure was moved up this morning, due to a cancellation. He had his bone marrow draw and spinal tap at 9:30 instead of 11:00. Stephen had to hurry to get there in time. SD was much more nervous and scared this time; we think he may have been thinking of his last procedure, when he had his port put in. That one was difficult for him to wake up from, and then he was in pain for several days afterwards. This procedure was much shorter and less painful, and we tried to explain that to him. He was still pretty apprehensive when he drifted off, though.

SD recovered from the sedation much more easily this time. When he began to stir, we told him that he could have some food now. Then he really started to wake up!

He's much more steady on his feet; he is still feeling weak, but he walked about 9 feet this afternoon before his nap.

We received a mail delivery today - we got two cards, and SD got several pictures from his friends at church! He was still somewhat in pain when he looked at them, so he just whined. But we're thankful that people are thinking of and praying for us!

SD was also given a blanket from P.O.R.T., yet another volunteer organization here. The blanket has all kinds of balls on it, and SD immediately fell in love with it!

P.O.R.T. also brought a "sibling support bag" for Emma, including several books and a stuffed cat. Emma started kissing the cat as soon as she saw it!

We are getting ready to go home today! Praise the Lord!

December 4, 2011

Last night, Stephen and Mandy stayed at the Renucci House again, and Grandma Cleary spent the night with SD. This morning, SD went for another wagon ride with Grandma Cleary - and he walked by himself for a few steps!

The nurses completely removed his IV this morning. Yesterday they had cut his fluids in half, but today they just took it completely out so he could move around more easily. They'll have to put his fluids back on again at midnight because SD has another procedure tomorrow that requires sedation.

SD is looking much better; his color is almost back to normal! He's also feeling more active; he's still exhausted a lot of the time, but he enjoys the wagon rides and tolerates walking when we make him do it.

One of the cashiers at the cafeteria (Beth) recognized Mandy when she had lunch there today. Actually, she recognized her as "Emma's Mom." Beth said that she prays for SD every night and will continue to do so. We've said it before: the staff here is unbelievable! Even the cafeteria staff!

A volunteer here named Kathy came in and told him the Christmas story, setting up a nativity scene. SD listened very well! She asked SD if he had any prayer requests, and he told her "outside" (a not uncommon request recently). So she said she'd pray that he would be able to go outside soon.

SD got his second set of visitors today! A family from our church has relatives who live in Grand Rapids, so they sent them over with a message and to be an encouragement to us. It has been humbling to learn about new groups of people praying for us every day. We are so thankful!

SD finally allowed us to read a book to him. Stephen read him "There's a Wocket in My Pocket," by Dr. Seuss.

Mandy got to lay on SD's bed with him for the first time since learning of his diagnosis. It was very comforting to do that after so long! This week we've really missed having the ability to hug him or hold him at any time. The hospital gave us a book about childhood leukemia; according to that book, after a family experiences leukemia, they often start hugging more. We already hug a lot, but when you go for a week without being able to hug, you remember how important it is.

SD is much more cuddly today. Mandy spent a while this afternoon just holding him on her lap. We think he's been in too much pain previously, and that's why he has been avoiding being held. We're so thankful that we can hold him again!

We have been under the impression that we would be staying here until at least Tuesday of this week, but we are now being told that we might be able to go home tomorrow (Monday)! SD does have a spinal tap scheduled for 11am, and he isn't very sure on his feet yet, so we are not counting on it. But it is a possibility. So far his body is handling the treatment quite well, thank God!

December 3, 2011 (Afternoon)

SD sat on the couch for quite a while this afternoon. This picture is of us watching one of his favorite movies.

We have a soft mat in his room for him to play on, rather than the hard floor. He hasn't played on it yet, but he did walk on it a bit today.

Mandy and Grandma Cleary participated in a Polish dinner at the Renucci House tonight. Meals at the house are put on by volunteer organizations and are quite good!

SD took several more walks this afternoon, and some wagon rides as well. He's in much less pain today, and no longer objects as much when people touch him.

We've been finding some foods that he's more likely to eat. Peanut butter and jelly (minus crust) and applesauce are the biggest hits. We think it may be because they're softer foods.

Today we sat SD down and gave him The Talk. We told him that his blood was sick, and that it would take a long time for the doctors to fix it. And that we would go home soon, but that we would have to come back to the hospital a lot. And that his port would have to stay in a long time, and that the doctors used it to help make him better. In between each part he would quietly say "uh, huh." He's a very smart boy, and we really think he understood what we were saying.

December 3, 2011 (Morning)

Stephen and Mandy both spent last night at the Renucci Hospitality House, a little mini-hotel built into the main hospital. Praise the Lord for that place! We're able to stay in the same room for the next two nights as well, but Grandma Cleary will probably use it for those nights. Last night was the first night that neither Stephen nor Mandy was with SD.

When Stephen and Mandy returned to SD's room around 11:00, they found an empty room! Grandma Cleary had taken SD down to the play room in a wagon. SD loved the wagon! SD specifically asked if Emma could get in the wagon with him, which was a relief - he had barely acknowledged her over the last few days, and they used to be so close. We let Emma go in with him and they took a little ride together. Then we took SD out to a quiet area overlooking the city, and he walked (with baby steps) a little more than a foot! He is also much more comfortable sitting up and doesn't act in pain when we hold him.

One of the physician assistants suggested that we encourage him to walk more today; at this point, the more he gets out of bed, the better his chances for getting released early this week. He's been bed-ridden for long enough that he's now considered a fall risk. He acted in some pain when he walked a bit, but we're sure he'll improve as he gets more exercise. After travelling around the floor and walking, SD took a good long nap.

Grandma Cleary tells us that SD laughed a little this morning, when she was stacking pillows on a chair and one of them fell on her head. We're so glad that our boy is gradually returning to normal!

December 2, 2011

Yesterday SD was asking for pie (one of the only foods he has asked for by name since being here :) ). He seemed to especially enjoy pumpkin pie at Thanksgiving, but there is no pumpkin pie in the hospital. This morning, the nurse who had checked on the pie for him brought in a dozen mini pumpkin pies that she had made last night. The staff here is just incredible! Unfortunately, SD has not wanted to eat it yet. So Daddy helped him by eating just one. ;)

While watching "Polar Express" this morning, at the part when the train goes down into the gulch, Mandy put her arms up in the air like she was on a roller coaster. She glanced at SD, and he was looking at her with a wide smile on his face! It was the first time we've seen him smile since last Friday (one week ago). And then he smiled again a minute later! What an encouragement!

SD is starting to interact more with movies now. Since we got here, he has always just stared at the TV with a rather glum expression. Today he began to make animal noises and discuss what's going on in the movie, which is more normal. He's not up to his usual level of interactivity, but he's making progress.

The hospital had a party today for all the children, with pizza, pasta, and root bear floats. There were games and prizes, too. SD did not feel well enough to get out of bed, so the volunteers running it brought up a slice of pizza and a "pillow pet". He has not cuddled with any of his stuffed animals yet, but we are sure that day is coming.

This evening, SD received his first dose of another chemotherapy drug (he's had five different ones now, I think). Unfortunately, this new drug needs to be injected into muscle, with multiple injections at once. So SD was held down while he got two injections at the same time. Stephen was out of the room, since he doesn't handle needles well. SD shut his eyes very tightly and cried, but did not scream or thrash around. He's a brave boy!

December 1, 2011

SD is now sleeping without pain medication, praise the Lord! We're hoping he'll stay that way all night. He is also out of isolation, so he is no longer surrounded by masks and gowns all the time. We have been so blessed by many things, especially how many people all over the country are praying for him! We really appreciate that!

He crawled a couple feet today (on his bed) but was exhaused and in quite a bit of pain afterwards. Please pray for his eating; he is continuously hungry but the medications mess with his stomach (both nausea and upset) as well as his taste buds and the type of foods he craves. So he will ask for food but then not want or be able to eat anything. It also seems like his gums are sore. This is frustrating for him (and for us).

Today he had his third blood transfusion, and got more color afterwards. His red blood cell count was down to around 7 and they wanted to get it up.

He also received his first care package today. Aunt Carmel sent him a stuffed alligator (one of his favorite animals) and a book that animates the animals when you turn the pages. At home SD was always a great reader, but at the hospital he had completely refused every book until this one came. He wouldn't let us read it to him, but he looked through it twice!

We are excited about his progress today; he is definitely improving, albeit slowly (which is what the doctors expect). God has blessed us in many ways!

Update (December 2): We forgot to mention that he also was able to get all the monitoring wires off! He had three wires on his chest (one for heartrate, two for breathing), and a light that had to be wrapped around a toe or finger (for oxygen). He was pretty used to these; they're standard for ER/ICU, and he has been in ER three other times. He never likes them, though, especially the oxygen sensor.

They also took his blood pressure cuff off and only put it on (with the oxygen sensor) as necessary. The only thing left attached to him now is an IV for fluids (and occasional antibiotics) that goes into his port. He is much more comfortable, though it's a bit different for us. It was comforting to know that the computer was always watching and would call the nurses automatically (also, it was convenient for us to glance at during the middle of the night). However, it's reassuring to know that they wouldn't take it off unless they felt he was ready.

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.

Introducing SD

This is our son, Stephen Daniel (SD). He is two years old.

This picture was taken on September 28th, several weeks before his illness.

SD was helping us move some branches in the yard, and is pictured here flexing his muscles to show how strong he was.

On the evening of November 28th, 2011, SD was diagnosed with Acute Lymphoblastic Leukemia (Pro-B).

This blog is a journal of his struggle, and how he (and we) learn to live with Leukemia.