Great news from U of M

Andrew went to U of M last Friday. We received a really great report about his progress. Andrews numbers are up. In fact, they are sky high for Andrew. We were able to reduce his medication even more. The doctor also mentioned possibly stretching the amount of time between visits. Right now we go every 3 weeks for a lab draw and breathing treatment. We see the doctor every other visit. If Andrew's numbers stay up, we should be able to push the doctor's visits to longer intervals. We will have to see how he does with this reduction in medication. As for now, we are thrilled with his improving immune system.

An interesting weekend....

I know it's been some time since our last post. Andrew has been doing very well on his medicine, however, reduction of medication has been extremely slow. Much slower than we thought it would be. Andrew's body takes several weeks to adjust to the lower amount of medication. But, slow and steady wins the race.

This week we had an interesting episode. Andrew ended up getting sick on Wednesday morning. This meant he had to miss "Special Person's Day" at school with Auntie Shelayne. He was bummed. On Thursday night his fever spiked pretty high. We went to U of M on Friday morning for a lab draw and breathing treatment. The nurse who administers the breathing treatment wanted Andrew checked out before he had the medication. The doctor who looked at Andrew said his lungs sounded clear and that he has a virus. Andrew's numbers were also very high (every one was in the normal range). She felt that these numbers were a reaction to the virus. This is good news because it means Andrew's body is trying to fight off the virus.

Andrew ended up having a blood culture done and he also needed an antibiotic...which meant starting an IV in his hand. So, that was Andrew's second poke of the morning...poor guy. Anyway, after about 5 hours we were able to leave the hospital(This appointment usually takes about 45 minutes). We got some McDonalds and headed home for a relaxing weekend. Andrew is feeling much better today. Looks like he will be well enough to go to school on Monday.

It's been a while....

Hi all. I know it's been a few months since we have posted anything....sorry...busy summer! Andrew is doing well. He has been to U of M every three weeks this summer for either a blood draw or a doctor's visit. So far his numbers have stayed steady except for his neutrophil count which seems to be dropping. The doctor has not reduced his medication all summer because of this. The doctors are keeping a close watch on this number just in case it drops further.

The good news for Andrew is that he is able to go to school, which starts on Monday. He will be in kindergarten at Living Word. He is very excited! We ask that you keep Andrew in your prayers as he starts school and is exposed to more people. Pray that he stays healthy and does not have to miss too much school!

Back from Disney with a minor complication

We are officially back from Disney World. Boo! Everyone had a great time, especially the kids. Sophia's favorite part was eating dinner with the princesses at Cinderella's Castle. Andrew's favorite part was going on a pirate cruise with some pirates. Madeline's favorite part was eating at the Living Seas and seeing Nemo.

Our last night in Disney was interesting, however. Andrew woke up in the middle of the night complaining of stomach pains. He got sick and had a high fever. In the morning I called U of M and the doctor said he could fly home, but should come right to the ER when we arrived at the airport. Chris took Andrew to U of M hospital when we arrived home and has been there most of the night. I just got word the Andrew is doing fine, he just has a bug that is causing the fever. His lungs sound good and his throat looks fine. His blood counts are up, so the doctor's felt he was healthy enough to come home. So Chris and Andrew are stopping at McDonald's and heading home. Tomorrow will be a day of rest and then back to reality.

Sophia and Andrew Get Strep Just in Time for Disney

Andrew was running a fever in the 101.5 range on Sunday, so we called the hematologist on call at U of M Hospital, who advised us to go to the emergency room at Beaumont yet again. They did the same tests on Andrew they have done in the past. Everything came back negative and his blood counts were high, so they sent him home.

Andrew's fever persisted intermittedly on Monday, and he started complaining of a sore throat every now and again. Sophia started getting a fever and showed signs of having pink eye, which Andrew and Madeline had a few weeks back. The fevers continued today, and Andrew's got up to 103.5 today, so we called U of M again today, who told us to see our pediatrician. After checking the two of them out, he determined that they both have strep.

He gave them bith antibiotics, and said they should be fine and not be contagious within 48 hours. That's good, because our flight leaves for Disney World in 72 hours. Madeline has not complained about feeling sick as of yet. Should be an interesting few days befor we leave.

We are back home....

....and Andrew is doing great. Andrew just ate some food and is watching Toy Story. He is feeling well and I think most of the anesthesia medicine is wearing off. He was a little emotional and upset in the hospital, but has since perked up after eating. The doctors told Andrew he needed to relax and take it easy the rest of the day and he should be back to normal by tomorrow. A day of movies and naps sounds great to me!

Surgery Finished

Andrew's port removal is complete. The surgeon just came out and talked to us. He said all went well and that there should be no real problems. We are just waiting for him to wake up so we can go back and see him.

Andrew in Surgery

Andrew was just admitted into surgery. The procedure should take about an hour. We will update you when the procedure is finished.

Port Removal on Schedule

U of M Hospital called today, and we are still on schedule to have Andrew's port and central line removed tomorrow. We will be at the hospital at 8:45 in the morning, and the surgery is scheduled for 9:45. If everything goes as planned we should be back home later tomorrow.

Andrew Responds to Cold

Andrew had a cold last week, then got pink eye last Wednesday. He got some drops from his pediatrician, and it cleared up on Thursday. On Friday we took him to U of M for his six week blood count and checkup with the doctors. His white blood cell counts were on the high side of normal ranges, meaning his immune system was responding the way it should to a cold, by producing large amounts of white blood cells and neutrophils. The doctors were encouraged by this and reduced his medication again, to two .7 mL doses per day. They also gave him some amoxicillin to help with his cold. We are still on schedule to have his port and central line removed this Friday, with a tentative time of 9:45AM. They will finalize the time when they call us the day before the surgery.

An update from the last few weeks

Andrew is doing well. We had a lab draw two weeks ago which showed his numbers about the same as the time before. His ANC dropped slightly to 1500 (before it was at 2400). Even though his numbers did drop, Andrew's doctor decided to reduce his medication. He is now taking .7 mL in the morning and .8 mL in the evening. Andrew's doctor also said he could have his port taken out. This made Andrew very happy. We have an appointment scheduled for this surgery on Friday, May 27th. This is an outpatient surgery, unless the doctors feel he needs to remain in the hospital overnight. He should be healed up by the time we go to Disney!

Last week, Andrew also had an appointment with his nephrologist. The doctor feels Andrew is doing well and his blood pressure is under control. The nephrologist feels we can take Andrew off his blood pressure medication in the next few months (maybe by the end of the summer or early fall) because we are weaning him off the Cyclosporine. So, hopefully, by this time next year, Andrew will be off of all medication. We go back to U of M to see the oncologist next Friday, May 20th.

Good News from Hospital Visit Today

Today was Andrew's four week blood count and doctor appointment in Ann Arbor. His blood count numbers were the best they have been in a long time. His neutrophil count was 2400, white blood cell count was 4.2, and platelet level was 248,000, all the highest numbers since he got off the neupogen injections last summer. The doctors reduced his medication doseage again, from .8mL in the morning and .9mL in the evening to .8mL twice a day.

The doctors also decided to change Andrew's appointment schedule going forward. Instead of the blood count every two weeks at Beaumont and doctor's appointment evry four weeks to determine whether to reduce his medication, we will now go to Beaumont every three weeks and U of M every six weeks. After the three week blood draw at Beaumont, we will now talk to the doctors over the phone and decide whether to reduce his medication without a physical appointment. The end result is that we now have blood draws every three weeks instead of two, and the opportunity to reduce his medication every three weeks instead of four, both positives for us.

The doctors also changed the way they will be weening Andrew off of his cyclosporine medication going forward. Before, they we trying to reduce both of his daily doseages .1mL each time. Now they feel, and studies and his blood counts so far seem to suggest, that weening him more slowly will help his counts stabilize short term and be more beneficial to him long term. So they have decided that they will only reduce one of his two doseages .1mL each time, in essence doubling the amount of time to ween him off. It seems to have worked out well this last time.

The last major positive decision the doctors made today was to start setting Andrew up for removing the port and central line he had surgically installed when we were in the hospital last spring. It doesn't look like it will be very necessary going forward. If his blood count levels are still up at his draw in three weeks, we will set an appointment for late May to have the port removed. That will give him time to heal before we leave for Disney World June 10, and get rid of the bump on his chest for the summer.

One Year and Counting

It was one year ago today that we first took Andrew to the pediatrician for a cold he had. They noticed that his blood counts were low, which set off the series of events that led to his diagnosis of aplastic anemia and the subsequent immunosuppressive therapy that he is still in the process of. In that year, he spent ten days at Mott Children's Hospital, has had dozens of platelet and blood transfusions, several emergency room trips, and a roller coaster ride of blood count numbers from critically low to completely normal.

At this point, Andrew is in the process of being weened off of the medications he is taking. The doctors are encouraged with where his blood count numbers are at. He has another appointment this Friday, and hopefully his numbers have steadied enough to where they can reduce his medication yet again. He has not had a blood count in three weeks, so we have no idea where they will be at on Friday. He has been generally healthy with no colds to speak of the past few weeks, so hopefully the counts will be high.

Erin and I would like to thank everyone who has supported Andrew, and our entire family, over the course of the past year. The amount of help we have received still amazes us, and it has made a difficult situation much easier to deal with. Hopefully one year from now Andrew will be done with the medication and considered recovered from this.

Interesting Few Days for Andrew

We took Andrew back to U of M Hospital for his scheduled appointment on Friday. His numbers came back lower than the previous Friday. Most importantly, his neutrophil count dropped from 1100 to 700. The doctors have told us in the past that they want his neutrophil count to stay above 1500 for a period of time before they reduce his medication. Despite that, Dr. Boxer decided to try lowering his medication slightly anyway, from two doses of .9 mL a day to one .8 mL dose and one .9 mL dose. Andrew is scheduled to have another blood count to see how things are working.

Dr. Boxer also talked to us about trying a niacin treatment he has been working on. Basically, Andrew would get 100 times the recommended daily dose of niacin, and that seems to spur neutrophil production in the body. The nurse practitioner we met with Friday told me it doesn't work on everybody, and that Andrew would have to be able to swallow pills to get that amount of niacin into his body. We are going to work with Andrew on swallowing pills in case we revisit this treatment in the future.

On Monday morning, Andrew woke up with a cough and was gasping for breath, which were very similar symptoms to what he had when we first took him to the doctor last April. We were concerned because of the low numbers and reduced medication, so we ended up taking Andrew to see his pediatrician. They checked him out and did a blood cell count, and the results were about the same as Friday. He still has a cough, but his breathing has been fine since Monday morning. His next blood count is on Thursday, so we will see where he is at.

Movin' on up

Andrew had a lab draw today at U of M. His numbers are up, but ANC is still not back to the level it was. ANC is at 1.1. Platelets, hemoglobin, and white blood cells are all at good levels for Andrew. We take Andrew back to U of M for an appointment with the doctor next Friday. Hopefully, by then, his numbers will be back on track.

Andrew's Numbers Drop

Yesterday, Andrew had a lab draw at Beaumont. A nurse at U of M called Erin around 11:00 to tell her that Andrew's ANC level had dropped to 0.4. Last Tuesday this number was at 3.2. This is a pretty significant drop. The nurse spoke to the doctor and the doctor wants Andrew's medication increased for the time being. She also wants Andrew to have another lab draw on Friday to see where his levels are at. Hopefully, his numbers will increase back to a more stable level. Please pray for our little guy!

Another Round at Beaumont

Today was interesting. Andrew, Chris, and I all ended up back at Troy Beaumont because Andrew spiked a fever around 3:30 this afternoon. This exact same thing happened about 10 days ago. Luckily, I was home because of Winter Break. Andrew's fever was 102.7. We called U of M and they told us to, once again, bring him into the nearest hospital. The doctors at Beaumont took good care of Andrew. The procedure is pretty much the same; Tylenol and Motrin to reduce the fever, blood draw from the port, influenza swab, chest x-ray, and an antibiotic. Once all those details were taken care of, we were able to come home. So Andrew is snug in bed. Hopefully, this was the extent of his virus and the fever doesn't come back. We will see how tonight goes.

Some Good News and Some Bad News

On Friday, Chris took Andrew to U of M for a checkup. The results from Andrew's blood work showed that his numbers have stayed the same from last time. Therefore, Andrew's medication has been reduced a little bit more. So we are steadily in medication reduction mode.

This was the good news.

Now for the bad news. Last night, Saturday, Andrew was spending the night at his grandparents house. We received a phone call around 9:00 that Andrew had a temperature of 102 degrees. We called the on-call oncologists at U of M and she told us we needed to take Andrew into the nearest ER. Chris met my mom at Troy Beaumont. At this point, the on-call doctor at U of M had contacted Troy Beaumont, so they knew Andrew was coming. When Andrew arrived, he had a temperature over 104 degrees. He tried taking some Tylenol, but threw up right afterwards. Andrew was brought to a room where they ran a series of tests. They tested his blood, port, and urine for different infections. They also tested for influenza. All tests results came back negative. Therefore, they determined that Andrew is trying to fight off a virus. The doctor gave Andrew some antibiotics through his port and then we were able to come home. Andrew woke up the next morning with a fever, so we have been treating it with Tylenol and Motrin. Andrew has been resting all day. Hopefully, he will feel better tomorrow!

Andrew Goes to a Red Wings Game

On Friday, February 4th, Andrew was invited by Lakeshore Energy (the group who sponsored his 'wish')to watch the Red Wings game from their suite. Andrew had an awesome time. When he arrived, the representative from Fox Sports gave Andrew a bag of Red Wings items, including a signed picture from Drew Miller (Andrew's favorite player). During the National Anthem, Andrew and Chris were able to stand by the Zamboni entrance and watch Karen Newman sing. When she was done, she stopped to take a picture with him. They also gave Andrew a practice puck right off the ice. After the first period, Dino Ciccarelli visited the suite and Andrew got to meet him. Even though the Red Wings lost the game, Andrew still had a great time!

Our 100th Post!

This is our 100th post and it comes with great news. Andrew's medication reduction has been going well. His numbers are as follows: hemoglobin-11.4, platelets-177,000, white blood cells-2.7, and ANC-1.5. These are all really good numbers for Andrew. They have held since his last blood draw. We take Andrew back to the doctor on February 11th. If the numbers are similar, then we can continue reducing his medication.

Happy Birthday Andrew!

Today is Andrew's 5th birthday. Happy Birthday to our little guy. Andrew wants to celebrate by eating "Chicago H-Dogs" which are pickles in a bun with ketchup and mustard. The hotdog is on the side. He wants a golf birthday cake and golf cupcakes for his birthday snack at school. We hope you have the best birthday, Andrew. We love you!

Latest Update....

Andrew went to U of M yesterday. His white blood cell count is at 2.8, his hemoglobin is at 11.3, his platelet count is at 222,000, and his neutrophils are at 1,500. These are all really good numbers for Andrew. The doctor has begun to reduce his medication, which means we are now in phase two of Andrew's treatment. If Andrew's numbers were to decline, we would need to increase his medication, therefore, if all goes well,it will take anywhere between 9 months and a year for Andrew to be completely free of all medication.

Andrew's numbers are up!

Andrew had a lab draw at Beaumont on Monday. Most of his numbers are on the rise. His hemoglobin is at 11.0, his white blood count is 3.7, his ANC is 2.5, and his platelets are 146,000. Platelets are slightly below normal, but nothing to worry about. Andrew's white blood cells and ANC are way up from last time. Andrew goes to U of M on January 14th for another appointment. We will find out then if we can start reducing his medication.