January 31

SD turned 2 1/2 on Sunday, a thought that makes his parents' head spin a little. His 2 1/2 year check-up was today, and went great! He has grown exactly 3 inches since turning two, and over two of those inches were grown since he had his leg checked out in mid-November. That was shortly before his diagnosis. We were informed that his treatment would temporarily stunt his growth, but so far he is still growing as he ever did! In all other areas he is doing just fine.

SD decided that January was the month to start talking. He has been building a vocabulary for several months (with the exception of December), but fairly slowly; we've thought that he wasn't talking because he felt no need to. He communicated amazingly without words, and understood pretty much anything we said to him, so we were never worried about his development. This month he has been saying a new word just about every day, and has been putting phrases and even a few sentences together. Of course, not many people would be able to understand him at this point, but we do (usually). This is very exciting and enjoyable to observe.

Today was the first day that he and Emma have had a chance to play in the snow all winter. We have been having an unbelievably mild winter so far, so between that, schedules, and health issues, that enticing white stuff has remained elusive. Today was unseasonably warm, making it perfect for building a snowman, so Mandy bundled the kids in their snow gear (what a production!) and headed outside. SD was a bit uneasy about the terrain at first; the way the snow sank beneath him with every movement just seemed to be a lot for him to handle with the bulky clothes and boots he was wearing. His muscles remain somewhat weak compared to what they used to be. His favorite part of the construction was giving the snowman arms. Once he got into that, he was ready to stay outside for as long as he was allowed.

Emma had a great time from the start! It was her first time in snow ever, and she thought the whole experience great fun. A sled to pull the munchkins around in seems to be called for! We aren't familiar with any sledding hills in our area, but they are young enough to enjoy simply being pulled around the yard for now.

January 23-26, 2012

SD has been shuffling around on his own for close to a week now. Who would have thought a couple months ago that seeing him walking would be such a thrilling sight? Now it takes us by surprise every time, providing multiple delights daily. In the past few days, it seems that he has decided he's done with crawling again, unless he's playing. If he wants to get somewhere but feels too shaky, he will ask for help.

SD's counts looked great on Monday, allowing him to resume half doses of 6-MP. His ANC was far higher than it has been during this whole 6-MP period, so we are hoping that he'll be able to stay on it for the rest of the month.

He had counts checked again yesterday, and his ANC was actually at normal levels! With that being the case, he is now taking the full dose of 6-MP again and will continue to take it through the next week. We hope that his ANC will remain stable enough to allow the start of Interim Maintenance next Thursday.

January 15-19, 2012

On Sunday and Monday nights, SD woke up seeming scared, possibly in pain. He wanted to sleep with us. We decided to give him Prevacid Tuesday morning, which we stopped giving him since it changed to an "as needed" status. He went to sleep and stayed asleep with no trouble that night, so it seemed to have helped?

Also on Sunday, SD developed a runny nose. He woke with a cough around 4:30 Wednesday morning and spent the remaining hours of sleep in our bed again. He was wheezing quite a bit during that time, but it stopped when he got up and hasn't returned. We are praying that this doesn't turn into anything more.

We arrived at the Renucci House around 9:00 last night and allowed SD to use the play room for awhile after he'd had a bite to eat. During this time, he took his first solo steps! He may not have even realized he did it; he just took three steps toward a train set like he had never stopped walking. He hasn't repeated the accomplishment, but it will not be long before it becomes normal again!

Today was our last clinic appointment this month. SD seems to take each succeeding clinic vist more in stride than the last. He knows the drill: EMLA cream on his chest first thing in the morning, stats taken by Rick once we're checked into clinic, port accessed. He still doesn't like the accessing part, but who can blame him? After his port is accessed and labs are taken, we've been going to the play room to get a prize. Today he picked out a '67 Chevy Hot Wheels car, but we accidentally left it behind. SD cooked a meal in the play room while we awaited the summons for "road trip" (that's what they call the walk down to Sedation, which usually includes two patients, their parents, and a nurse).

SD always likes to sleep post-sedation, but today we had a long wait while trying to wake him! He hasn't slept that hard and long after a spinal since his first one, which had also included the placement of his port.

Soon after returning to our exam room we were told that we need to pause 6-MP yet again. This was a rather discouraging announcement; he has taken only three half doses since given the second go-ahead and his body still wasn't able to keep up with it. His enzyme levels are fine, but the nurse thought that his numbers first went down because of the Bactrim and now by his fighting off something. We were encouraged by the appearance of Dr. Kurt (SD's primary oncologist), however, whom we had not seen since a week before Induction ended. She answered our questions, and explained the next leg on our "Roadmap".

SD is to have his counts rechecked in Traverse City twice next week; if they are high enough, he will continue taking 6-MP. We will not need to go to Grand Rapids next week (unless he develops a fever for whatever reason), which will be a nice break after going every week for the past two months. It was a relief to hear that SD will not be required to make up the days of missed 6-MP. He will take what he can handle through this month, then it will simply be dropped.

Provided that his counts are high enough, Consolidation will end and Interim Maintenance will begin in two weeks! IM is scheduled to last for two months. During this phase, SD will receive vincristine and increasing amounts of methotrexate via IV every ten days, with no oral chemo at home. Of course, all this hinges on how the medications affect his counts. If they are too low, the methotrexate will not be increased. He will receive one lumbar puncture during this two month period, rather than the near-weekly ones he's been going through for two months.

After IM, he will enter Delayed Intensification, followed by a second Interim Maintenance phase. These phases are scheduled to last about two months each. We don't have the details of them yet, but it is good to know that in about six months, SD will be in true Maintenance!

Our clinic visit was shorter than usual today, ending right around lunch time. On the way home, SD got car sick. He has been susceptible to car sickness since he was an older infant, but this was the first time it's happened for quite awhile. We are not sure if this was chemo-related or something that would have happened anyway. Once he was changed and we were on the road again, he felt so much better and was finally able to fall asleep.

January 16, 2012

SD was SO brave having his blood drawn today! He's always done amazingly well with needles when he isn't under the influence of personality altering drugs, but this was the first time I saw the phlebotomist need to fish for a disappearing vein. He just watched her without moving; he did cringe when she found the vein, but that was his only reaction. His courage was a relief to the phlebotomist, who said that she'd worked up a sweat with that draw. :)

We received the go-ahead to start 6-MP again a couple hours after returning home! All of his counts have gone up nicely since last Thursday. In this case, the ANC is the most pertinent set of numbers; since it's high enough, he'll be starting half doses today. We are hoping to figure out how much of the medication his body can handle to be effective while not crashing his counts soon.

January 9-13, 2012

SD's counts were high enough on Monday to begin the 6-MP. Since we didn't find out until late afternoon, we decided to wait until Tuesday to give him his first dose.

Stephen left Tuesday for a programmer conference in Ohio, planning to return Saturday. Mandy's friend Sarah came to our house to help with the children during Stephen's absence. While we usually leave Emma with a babysitter for clinic visits, Sarah and Emma came along this week and hung out at the hospital. Emma's librarian friend seemed pleased to see her again and to meet SD.

This was the first time that Stephen could not make it to a clinic visit. SD and Mandy missed his presence! Clinic went fairly smoothly, but we received slightly disappointing news. After just two doses of the 6-MP, SD's ANC dropped dramatically, to a level slightly lower than they had even been the previous week. (ANC is a measurement of how well SD can fight infections). Because of this, we need to hold off on the 6-MP again, and are completely dropping the Bactrim.

In place of the Bactrim (a medicine given twice a day, three days a week), SD will receive an hour long IV infusion of Pentamidine once a month. This should give him protection from PCP while not affecting his counts. When he is able to resume the 6-MP, he'll start out taking half doses. His blood is being tested this week for the 6-MP enzyme, which will determine if his body can actually metabolize this medicine. Tomorrow (Monday) he will have his CBC (Complete Blood Count) checked in Traverse City again, to determine if he can resume his oral chemo yet.

In non-medical news, SD has been rapidly progressing physically and mentally this week. Apart from being more demanding and emotional than he was prior to his diagnosis, he seems to be just about back to his old self. He is still weak, but his strength increases noticeably every day. Currently, he can walk with very little support and can stand on his own for short periods.

His speech is also showing great improvement! Not only is his vocabulary back up to speed with pre-steroid levels, but he is now doing new things for him, like trying to say three syllable words and put together sentences. He is also recognizing more letters and numbers, something he was very interested in learning just before he got sick. We are so very encouraged by all his progress. Every day holds new delights as he and Emma both continue to develop and grow in many ways.

January 5, 2012

What a difference a week makes! SD had nine days to work the dexamethasone from his system since his last appointment; his mood was very nearly back to normal, and we all experienced a peaceful night at the Renucci House Wednesday night. Because it was an NPO night (as all his January appointments will be), we allowed him to stay up much later than usual to eat before midnight. When he was ready to go to sleep, he invited Mandy to stay on his bed with his sweet smile, an offer she couldn't possibly refuse. We are absolutely delighted - and relieved! - to see our own boy coming back to us.

In the morning, we had to wake SD before he was ready, but after a short bout of whininess (who likes being awakened with a diaper change and the application of numbing cream on his chest, anyway?), he suddenly decided that he was in a great mood! This clinic visit was by far the most pleasant one we've had so far.

It didn't come without its problems, though. His line once again would not draw blood properly (they said it was still due to the steroids), and they didn't have time to wait for the alteplase to do its work. That meant they needed to draw blood from his arm for labs; he did SO well!

We had about a half hour to wait before being taken to sedation, so we brought SD to the playroom. We've brought him there before, but he never felt up to doing anything but sit on Daddy's lap and stare; showing him the "poke box" had only annoyed him. This time, once he realized that the poke box is actually a prize box, he became much more interested in it. He chose a small bucket filled with animals. He also got to choose a quilt from the mountain of quilts provided by a group called "Stitches of Love".

Before long, our nurse came in to inject the alteplase into SD's line, which set him back a little for his spinal tap. She also gave us SD's counts. They were not what we had expected, given the super numbers we'd seen last week. In fact, his ANC and WBC were very low, too low to begin his new oral chemo drug. The nurse explained that the low counts were to be expected and that it meant that the chemo is working. The reason that his counts were so high last week was that the steroids can boost counts, while the Bactrim can lower them. (Bactrim is taken as prevention of Pneumocystis pneumonia (PCP), a strain particularly dangerous to immunosuppressed individuals).

SD's spinal tap went fine and he was able to receive his IT chemo in spite of his low counts. We were told to hold off on the Bactrim this week to help his numbers increase and to have them checked in Traverse City on Monday. If they are high enough then, we can start him on the Mercaptopurine (6-MP), otherwise we'll wait until his appointment on Thursday to check his counts again.

The alteplase successfully cleared up SD's line and he received his vincristine around noon. The nurse allowed SD to help her flush his line when she was finished, which seemed to bump her up several notches in his opinion. Before she left he actually gave her half a smile; she had to work really hard for it, but it's the most any of the staff has received from him so far!

That night was the first time he has allowed tickling. Exciting!

December 31, 2011 - January 2, 2012

SD continued to improve on Saturday. He sat on the floor and used some muscles on his own. His food obsessions are starting to relax, and even change - he now likes fruit again!

The downside to SD feeling better is that he objects more to his medicine. He is getting strong enough to let his feelings on the matter be known in no uncertain terms.

SD played quite a bit on Saturday, which is a good sign:

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On Sunday, SD came with us to church! This was our first time in church together as a family since before Thanksgiving.

He did not stay in the nursery during service, but we let him go in after church was over; he was able to stand (with support) while playing in there. He did fall over, but then stood again after Mandy helped him up.

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Monday was Stephen's last day off before returning to a regular work schedule. SD continued improving in every area: his tastes were easier to please, he played much more, he showed interest in his surroundings, and he started moving on his own power.

Shortly before bedtime, we opened one of the last remaining presents - a gift from an Unknown Benefactor at Stephen's work. SD got so excited over this pirate ship, he started crawling!