Yesterday at the Hospital

We took Andrew to the hospital yesterday, and things got a little hectic. His platelets went up again, from 26,000 to 38,000, but his white blood cells and nuetrophils are still low. Because the doctors are worried about an infection wrecking the progress he has made so far, they decided to start giving him neupogen to stimulate white blood cell and neutrophil growth. The neupogen needs to be given to Andrew in the form of daily injections, so we had to be trained on how to inject him at home. This concluded with me having to inject my instructor in the stomach, which wasn't awkward at all.

After that, we had to deal with getting the neupogen. The hospital requires prior authorization from the insurance provider before they will fill it, because the neupogen is so expensive($6850 for a 30 day dose). Erin and I had to make several phone calls to make sure that everyone moved it along, so it would only be a few hour process. It was finally approved, and we were able to head back home. Even though Andrew didn't need any transfusions, we were there for almost as long as we have ever been.

Andrew's first injection last night went well for the most part, and hopefully today will even be a little easier. Because Andrew is out of the multiple transfusion per week risk, he only has to go in once a week now instead of twice. He will now go in only on Fridays.

Andrew is doing well. We just got back from Yiayia and Papou's pool, where he has been four times this week. He is swimming across the pool without any help. He has also found a new friend in the Wii lately. He is getting quite good at Wii Sports.

Andrew's visit to the hospital today....

Andrew went to the hospital today. All went well. His platelets are up again. They are at 26,000 (up from 22,000). His hemoglobin level is also up to 9.6. This is coming off the blood transfusion from Thursday. The only levels not showing signs of improvement are the white blood cells and neutrophils. These levels are still dangerously low, so Andrew needs to remain in his "bubble". Andrew goes back to U of M hospital on Friday to have his levels checked again and to see the doctor.

Bone Marrow Drive

The bone marrow drive on Sunday, June 13th was a success. Be the Match was able to add 116 more donors to the National Bone Marrow Registry. We also raised $825 in donations to help offset the cost of tissue typing. Awesome job! Thank you for being willing to support this important cause.

Good news and bad news

Today Andrew went to U of M for another lab draw. Andrew's platelets went up...AGAIN. They are at 22,000. The doctors are very encouraged by this increase. He has not had a platelet transfusion in over two weeks. We did find out, however, that Andrew's hemoglobin levels dropped. He is at 6.8 (down from 8.0) and needed a blood transfusion today. Blood transfusions take several hours, so we were at the hospital for most of the day. Andrew kept himself busy at the hospital playing Zingo, Chutes and Ladders, Memory Match, and watching Scooby Doo. We go back to the hospital for a levels check next Tuesday. Hopefully, his levels are still on the rise.

Andrew's Platelets Go Up

More good news on the day after the great blood drive. Andrew's platelet level went up from Friday on its own. On Friday it was at 14,000, and today it was 17,000. This is the first time it has gone up without a transfusion involved since mid April.

While the rise is small, and it is still a far cry from a normal level of 200,000, this is a very encouraging sign. It looks like his marrow is producing cells at more significant levels. Also, it has now been two full weeks since his last transfusion, and infused platelets don't really last that long, meaning the platelets he has now should be of his own making. It really seems like we are seeing progress already.

Results of Blood Drive

A message from the Red Cross:

The American Red Cross Blood Services staff extends their heartfelt appreciation for your efforts on behalf of the many patients whose lives depend on the availability of blood products in our community. Coordinating an American Red Cross blood drive and donating blood makes you an invaluable contributor in our community. Please know you are responsible for saving many lives.

The results of the blood drive at Living Word Lutheran, Sunday, June 13, 2010 are as follows: The goal was 31 whole blood units. 65 whole blood units of lifesaving blood were collected, giving as many as 195 hospital patients a chance to once again enjoy good health!!! This is 209% of the goal. There were also 21 first time donors.

WOW! Thank you very much for all your effort and support.

Marrow and Blood Drives a Success

Today were the bone marrow and blood drives at Living Word. We expected a big turnout since the blood drive appointments filled up days ago, but we never imagined the turnout would be as big as it was. The Red Cross started before the scheduled 8AM start time, and it looked like every donation bed was full until 4, two hours after the scheduled closing time. Some people waited almost three hours to donate blood. The marrow registry center was equally busy all day long. We will find out the official donation and registry numbers in the next couple of days, and we expect them to be impressive.

Erin and I would like to thank everyone involved in any way with the drives today. We appreciate all who donated or joined the registry, and the dozens of volunteers who helped run the two drives. We never had a shortage of volunteers at any point in the day. Thanks to the Red Cross volunteers who ran the blood drive. They had such a big line to donate that they never had a moment to rest throughout the day. Also, thank you to all who signed the banner and cards for Andrew. He liked them so much that he had us hang them in his bedroom. Thank you to those who organized the drives, helped set everything up, posted fliers and sent out emails. And most of all, thank you Joyce, who kept things organized amid the chaos that was going on. Everything ran much more smoothly than it should have given the turnout.

Erin and I really appreciate, and have been overwhelmed by, the support we have gotten from everyone throughout this process so far. Today was more than we ever could have asked. We can't thank everyone enough. Thank you for the time and effort that each one of you gave today.

Some great news....

We were in Ann Arbor today with Andrew. We had lots of great news today. First, Andrew did not need a platelet or blood transfusion. His platelets are down, a little, to 14,000. This is a borderline number, but the doctors felt we could wait until Monday to transfuse. The doctors were encouraged by this two week stretch without a transfusion, but still want to see number trends before saying the treatment is working. Second, Andrew can go off steroids, which means he will, hopefully, shrink back down to "normal" four-year-old size. Third, the doctor mentioned they have a few people off the bone marrow registry who would be possible matches for Andrew in case he needs a bone marrow transplant. So we left Ann Arbor today feeling hopeful and excited. Praise God for some great news.

Picture of Andrew

Several people have been asking what Andrew looks like right now, so we have uploaded a picture. He has gained several pounds because of the steroids and has a "moon face". The other side effect is facial hair, which he has on his upperlip (very faint though...you have to look closely to see it). He is still as cute and sweet as ever.

Marrow and Blood Drive Reminder

Just a reminder that the bone marrow and blood drive at Living Word is this Sunday, June 13, from 8-2. If you are interested in donating blood, please sign for an appointment up through the Red Cross web site, sponsor code Living Word. If you want to join the national marrow registry, you can just walk in. Hope to see you there.

Another Visit Without Transfusion

Another encouraging day at the hospital today. For the second visit in a row, Andrew's red blood cell and platelet levels were high enough to go home without having to do a transfusion. It will now be at least 10 days between transfusions for him. For the month before, he never went more than four without one.

His platelet level was at 17,000,down from 30,000 on Friday. To put it in perspective, the week before, he went from 47,000 post-transfusion on Friday to 7,000 the following Tuesday.

Andrew should only be on his current dose of steroids for another week or so, then they will ween him off of them over the following couple of weeks. This is good, because he is getting dangerously close to needing size 6 clothes. He was comfortably in size 4 before the steroid treatment started.

Some good news....

Today Andrew had a doctor's appointment in Ann Arbor. Andrew's platelet count was at 30,000 today. This means he held on to his platelets from Tuesday's transfusion (at least for this week). He didn't need any transfusions today, so we were able to leave a lot earlier than we thought! The doctors want to wait and see a trend in Andrew's counts before saying the treatment is working, but at least this was good news for today.

First to Arrive, Last to Leave

Andrew got blood and platelet transfusions today. We arrived at the infusion center at 8:30 this morning, and it took four hours for his blood levels to be checked. His platelet and red blood cell level were both slightly above transfusion level, so they rechecked and confirmed them, then decided to give him both transfusions anyway.

We have been in the infusion center for eight hours, and the blood transfusion is ongoing. There is only one other person left here, so there is a very good chance we will be the first ones in this morning and the last ones left this afternoon. That is quite a feat because they were double booked in the infusion area throughout most of the day because of the holiday, and they did about 25 infusions here today. Hopefully this will help his blood counts though.

Andrew has been in good spirits throughout the day, playing Zingo, putting together 100 piece puzzles, and watching a movie.