May 31, 2012

We brought SD to the Traverse City clinic for counts on Monday, May 21. His platelet count had gone down to 46,000. He didn't need a transfusion, but since they were still headed downward we had to check again that Thursday. By then, the count had jumped to 330,000 on its own!

Waiting to hear that SD did not need platelets!

SD was originally scheduled for a spinal tap today to kick off the second Interim Maintenance phase. A call from the hospital yesterday changed that; another child needed a procedure today, so they needed to move SD's to a later date. They kept him on for his chemo, however, so we headed down to stay at the Renucci House last night.

Everything went as planned in clinic today until SD's lab results came back with a shocking result for us all: his ANC had dropped to 210! That means no chemo today. He seems to be feeling very well, but Dr. Kurt thought he might be fighting a cold or some other kind of infection, which would explain the low neutrophil count (it was at 896 a week ago). On the plus side, all his other counts have continued to inch up since last week.

So. We will check his counts in Traverse City next Wednesday. If they are high enough, we'll head back to Grand Rapids and try again on Thursday.

May 17, 2012

SD no longer has to take chemo in his port at home. We had two 4-day (Thursday - Sunday) rounds that we had to give him. At the end of the first round, we had to de-access him at home. The needle in the picture below is what goes into his chest every time we go to clinic to draw blood and inject chemo (click on the picture to see it full-size). Mandy gave SD chemo through his port on eight different days; she was very brave, and so was SD!

As planned, we took SD to Munson on Monday to get his counts checked. He didn't look extremely pale to us (he has always been Very Fair; there aren't many more shades of pale one could be) and had good energy, so we figured that it would be a quick visit. It turns out that his counts had actually gone down quite a bit and that he needed some blood. Just getting that information took over two hours and we had not come prepared for a long stay! They allowed Emma to be with us, so it was a bit of a challenge to get through a long day confined to a little room, but we managed. Actually, the nurse was extremely impressed with how well the kids did - she was still talking about it when we went back today!

The transfusion took three hours, but we were at the hospital between 6 1/2 - 7 hours. Thank goodness there is a Meijer so close by! Stephen went out to pick up some food and a couple things to occupy SD and Emma. We were given our own room because SD was so neutropenic that the nurse wanted to keep him away from other people as much as possible.

After his transfusion, we were amazed over the change in SD. As mentioned above, he was energetic and cheerful before (although we were still dealing with the bouts of odd behavior mentioned in our previous post), but he had SO much color and was even more cheerful, laughing and giggling all the time like he used to do. The frightening thing for us is that he was that low in his counts and we didn't recognize it at all. We just can't get over how a child needing blood could still be as active as he had been.

SD had his counts rechecked today. While his hemoglobin is way up thanks to the transfusion (11.3 as opposed to 7.7 on Monday), his platelets and neutrophils have gone way down even since Monday. They haven't been this low ever, even during induction (except when he didn't have any neutrophils during the first few days after diagnosis). His risk of infection is very high right now, so we still need to be especially careful about what he's exposed to. We are just keeping him at home or outdoors, aside from the necessary hospital visits. He needs to go back on Monday for another blood count, and they expect to have to give him platelets that day.

We're so thankful for blood donors! SD's life was saved by multiple blood transfusions at the end of November, and he may need more transfusions before he's fully recovered. To all blood donors everywhere, we say *Thank You*!

May 10, 2012

All through last weekend we were amazed over how wonderfully SD was doing. Even after his spinal and long, chemo-filled day last Thursday, nothing changed from our last report of him for several days. We kept expecting to see him lose energy or become moody or complain of pain or something, but he just stayed bright and energetic. We so enjoyed having our little boy back!

On Monday things started to take a turn; he's been acting rather strange, almost like he's on steroids. We think it might be the 6-TG. He frequently says "ow" but when he ask him about it, he won't give us any hints to what bothers him. He gets extremely upset over little things, often screaming or hitting over them, but if we keep things light and smile at him, he will often instantly turn around and smile back as though he was joking. It's odd.

SD's clinic appointment brought a couple pleasant surprises to us today. First, SD only received Pentamadine, so he had no chemo in-clinic. This made our stay into a quick three hour visit. The other surprise was that we aren't scheduled to go back for three weeks! We were thinking that the rest of the month would still be somewhat intense, but it turns out that all he has left to deal with this month is two chemo drugs taken at home. One is called ARA-C, which is the one we administer via his port; he will take that one tonight (Thursday) through Sunday. The other is 6-TG, of which he has one week remaining.

His counts are a little low, however, so we'll be getting them checked in Traverse City on Monday. One convenience to SD's remaining accessed for the ARA-C is that we can wait an extra day to take his needle out, allowing him to have his blood drawn in TC without an extra poke. If he does need a transfusion (his hemoglobin is about borderline right now), he'll already be set up for it. As long as he continues to do well, he won't need to return to DeVos until May 31. And...that will be the start of Interim Maintenance 2!

May 3, 2012

Over the past week, we realized that we'd almost forgotten what SD was like before his illness. Because of the set-back last week, he hadn't had any type of chemotherapy for two weeks and obviously felt much better than he has in five months. He's been the vibrant, joyful child that has become a distant memory to us, having seen only glimpses of him to remind us he really is still there.

As is usual the night before an early appointment, we spent Wednesday night at the Renucci House. We arrived just in time to be treated to a delicious home-cooked meal provided by a local company for guests of the hospitality house. Many groups contribute in this way, which we appreciate so much! SD wanted to watch Winnie the Pooh when we settled in our room, so we got ready for bed and turned it on in hopes that it would help him get to sleep. This sometimes works. Not this time. Mandy suspects this had something to do with her sharing her ice cream with him (a RARE treat!) at 7:00 PM.

SD invited Mandy to sleep on his bed again. He considers this another rare treat, it seems; he smiles and giggles for the longest time before going to sleep, plays little games, comments on the city noises, holds his Mommy's hand...

Despite his late night, SD woke up on the morning of his long clinic day in fine spirits! He was cheerful most of the time we were getting ready. Since he was getting a spinal tap in the morning, he couldn't eat breakfast; Stephen and Mandy also skip breakfast on those days. In spite of that, he was happy to go see the "doctor" and get "poked", pushing elevator buttons and playing Angry Birds on the iPad as we made our way through the hospital.

SD acted like an old pro during the basic checks: he knows how to hold his arm for the blood pressure, Oxygen sensor, and thermometer. He knows where to stand to get weighed, and he knows not to lean on anything while they're checking his weight. He knows where to stand for his height measurement, though he doesn't quite put his feet back to the wall. These basic checks are done every time we go to clinic, and it's a well-known and comforting routine.

Nurse Mary came in and accessed his port (as a reminder, this means that she stuck a butterfly needle into him and taped over it to make an IV). SD began calling her "MehMeh" for the first time. Then Doctor Mary came in and gave him a brief checkup; after last week, they wanted to be sure it was safe to sedate him.

After his checkup, we went into the play room and SD chose a "poke prize." About half the time he's not interested in the prizes at all, but this time he wanted three! Two were bug collector kits, and he was also interested in a baseball bat with ball. He settled on one of the bug collector kits; it'll be interesting to see what he does with it this summer! While we were in the play room, we also met a young girl - probably 13 or so - who had Leukemia (ALL, just like SD) when she was 10, and has been off chemo for over a year, but recently started having headaches. So she was back in for a procedure to determine if her cancer had returned.

We were the first ones to go into sedation. While we were waiting, one of the male nurses started blowing bubbles for SD. This started a "bubble theme" that would continue throughout the day. The only thing different about this sedation was that SD actually fought it; he usually drops off immediately, but this time he really did not want to sleep! He also didn't want to wake up, which is normal. We always feel bad waking him up because he almost never gets a good night of sleep before an early clinic, but we have to wake him up before the sedation doctors can leave.

Most of our day in clinic went by swiftly! SD spent a good deal of time playing Angry Birds and Curious George at the Zoo. He also watched Winnie the Pooh (the 2011 version). We kept trying to get him to do other things, but he preferred brainless activities. we had planned to work on a birthday card for Uncle Josh (and SD was looking forward to it), but he would have nothing to do with it during his clinic visit.

Mandy and Stephen tried a grilled mushroom pizza for lunch; the clinic provides SD's lunches (pb&j that day), so he did not eat mushroom pizza.

SD did get to talk to Uncle Josh at one point, which he greatly enjoyed!

Near the end of our day in the clinic, we returned to the play room. SD got to play the Wii a bit, and Mandy gave SD chemo through his port for the first time.

Overall, SD did so well! Especially for not getting a nap. He only briefly got sassy at one point, but other than that, he was bright and cheerful the entire day!

After our clinic visit was over (about an hour earlier than we were expecting), we returned to the Renucci house. SD and Mandy pretended they were frogs while the dinner was being prepared.

Once dinner was complete, we played outside again until it started raining. When SD felt the drops on his head, he put his hand on his head and ran for the door!

It's hard to think of how the day could have gone better. We are so thankful for everyone's prayers!

May 2, 2012

This is just a quick note to say: last week when we went into clinic, the doctor decided that SD's congestion was too significant to sedate him. (They did sedate him when he was that congested during our first week at the hospital, but that was an emergency situation - they had to take over his breathing and everything). So, SD had his port accessed in the morning and they started him on fluids, but then we ended up leaving around 10 am instead of being there all day.

We rescheduled for this week (tomorrow, actually). SD's cough has been getting better, so we will hopefully spend about 10 hours in the clinic tomorrow.

We have mixed feelings about the clinic visit tomorrow. SD has been more himself the last few days than ever! He's been smiling and laughing and talking so much! Of course, it's better for him to get his chemo, but we know it'll give him a lot of pain (at least). We do expect SD to regress again this next month (starting tomorrow) - his temper, patience, energy, and vocabulary are all hit pretty hard by chemotherapy.

April 23, 2012

SD's steroids have been wearing off. His last dose was Wednesday night (the 18th), and he has been slowly returning to normal more each day. He's not quite back to normal - even today, he will occasionally have a mood swing and suddenly get upset, to the point of shaking (usually accompanied by a brief scream). He is now able to control it, though; we tell him to "settle down" and he will concentrate and return to normal in a few seconds. Of course, it's hard to tell how much of this is inborn stubbornness and rebellion, and how much is due to the steroids.

When he's not having "steroid rage", he's usually quite a happy boy! He doesn't laugh at all while he's on steroids; his laugh returned to our house again a few days ago as the steroids started wearing off. It's odd, but this time, we didn't even realize his laugh was gone until it came back.

Stephen took Emma to church last night. It's sad to say, but going to church is becoming a rare event in our lives! SD was so sweet; he wanted so much to go to church! "ah-Me! ah-Church!" We did our best to explain to him that he could not go, and his face was so crestfallen! We felt bad making him stay home, but we have to limit his exposure the next few weeks.

Emma was quite sullen the whole time - we think she thought we were taking her to a sitter. Poor girl! She finally cheered up in the car when she realized we were on our way home.

We would like to ask special prayer this week, especially for Thursday. We are going down to Grand Rapids on Wednesday (and we hope to see the butterfly exhibit again that day). Thursday morning we report to the clinic before 8AM, and SD will get some blood tests done. If they come back OK, then he will start the day with a spinal tap and then be attached to an IV pole all day (8-9 hours). Since that's such a long day, we're planning to spend that night in Grand Rapids, too.

SD will be getting four different chemotherapy drugs on Thursday. One of them hits the bladder hard, which is why he needs to be on an IV: he'll be getting IV fluids for a few hours before and after that drug, to minimize the chance of damage to his bladder.

So, we'd appreciate prayers in particular for:

• SD's blood work to be good enough for the chemotherapy. If he gets sick, or if his body hasn't recovered sufficiently from his most recent chemo, then we'll have to just go home Thursday and try again later. That would be inconvenient - both for finding a replacement babysitter for Emma, and for the additional expense of travel and hotels. So hopefully his blood counts will be good and we'll be able to continue his chemo this Thursday.
• SD - and us - for patience, as we spend the entire day in clinic. SD does not really relax while he's there (understandably), and he will probably not like being there for so long.
• SD's body as it reacts to the new chemo drugs. Three of the drugs will be brand new for SD.

April 12, 2012

SD received his last dose of doxorubicin for the month today! We don't know if he'll get it next month or not, but it is one of the drugs that has seemed to wear him out a little extra, so we are glad to see it go.

He has resumed his steroids today, however, and we noticed a difference in him in about six hours. Next Wednesday (when he gets the last dose of this pulse) can't come soon enough!

Speaking of steroids, we've noticed that SD seems to have a boost in mental development each time he comes off. We aren't sure whether this is simply perceived by us since he sort of shuts down while he's on them, or if his body is actually playing catch-up. Either way, we watch with wonder as he continues growing and learning.

As expected, SD's counts dropped this week, but he was able to receive all his chemo today. The steroids he's taking this week should boost those numbers, and we don't plan to bring him anywhere while he's on them, so his chances of staying healthy are pretty good. Of course, prayers that he will not get sick are still very appreciated!

To help us all get through this more intense phase, Grandma Cleary has generously loaned us her iPad. SD's favorite game is Angry Birds, and he'll usually play that as long as we'll let him, no matter how he's feeling. One day Emma wanted a turn, and when it appeared that a fight (or at least hurt feelings) was imminent, Stephen joked that maybe we should buy two iPads. SD agreed that we most definitely need two iPads; he got quite excited and exclaimed "ah-two! ah-pad!".