Andrew's Counts Down, Medication Reduction Delayed

Andrew's blood counts have gone down over the past four weeks, so the doctors don't feel he is ready to start weening off of the medication. He had a blood draw last Monday at Beaumont(we didn't get the results until a couple days ago) and another one at U of M today. His absolute neutrophil count(ANC), the one the doctors are now watching most closely, dropped from 2200 four weeks ago to 1400 at Beaumont to 1000 today. They want him to sustain an ANC of at least 1500 for four weeks before reducing medication. His white blood cell count has also dropped from 3.0 to 2.6 to 2.0 over this time span.

Andrew will have a lab draw just after New Years, and another visit at U of M on January 14. If his ANC stays consistently below 1500, they may increase his medication. We are hopeful that his numbers come back up before the next appointment.

Happy Thanksgiving

Happy Thanksgiving to all our family and friends! A day at the beach was a great way to spend the end of our vacation. The kids enjoyed playing in the waves and searching for seashells. Tomorrow we leave for home. I'm sad that our vacation is coming to an end, but am excited to get back home to see everybody.

Dinner

Last night we went to a restaurant called Coces. Sophia liked being "fancy" because she put her napkin in her lap. Madeline liked smelling our wine glasses. Andrew liked the instruments from the jazz band. We had a great time and it was delicious!

Sea World

We just got home from Sea World. The kids had a great time...of course. The first thing we did was a meet and greet with Shamu. Then the kids took photos with Santa. After we took these photos we went to see the penguins, polar bears, walruses, and whales. Sophia loved the penguins. We took several pictures. I know Sophia's kindergarten teacher will be thrilled (we are definitely looking forward to penguin week!) After we saw these animals we watched two shows. The first was a seal and otter show and the second was a dolphin and bird show. Both were excellent. After the shows the kids wanted to feed the seals and the bat rays. Everything went smoothly until a bird stole a piece of fish right out of Sophia's hand. At the end of the day we were able to take pictures with Corky, the killer whale. The best part was that no one else was around, so the kids were able to watch the whale for quite a while. The kids are all resting right now and we will be off to dinner shortly. Tomorrow we spend time watching the Lions play football, enjoying the hotel Thanksgiving brunch, and visiting the beach. Until then....

Legoland

Today we went to Legoland. The kids enjoyed riding on all the different rides. Andrew rode on the race cars several times. Sophia rode on her first roller coaster. Madeline rode on a Lego boat. Sophia and Andrew made their own driver's licenses. All three kids rode in a pirate ship that sprayed water. They had a great time. Sophia, Andrew, and Madeline each bought a Lego set at the gift shop and we spent the rest of the night assembling Lego models.

Tomorrow we go to Sea World. We also celebrate my (Erin's)birthday. We have reservations at a restaurant in San Diego. We also have a birthday cake from a bakery called "Baby Cakes". Chris has an interesting story about purchasing the cake...ask him about it when we get back =)

San Diego Zoo

We just got home from our San Diego Zoo experience. It was amazing! We arrived at the zoo around 9am and left at 3:30pm. It was a long day for the kids, but they had a great time. We saw all sorts of animals and rode on the "Skyfari" (a cable car ride). We also hit the gift shop (of course!) right before we left. I have attached a few photos. Tomorrow we go to Legoland.

First Day of Vacation

Well, we are finally in San Diego! Yesterday was a big adventure. The limo picked us up at 5:30 am. We got to the airport and checked in...we had a lot of luggage including three car seats. Before boarding the plane, the kids had fun riding the monorail and the moving sidewalk. The flight was very smooth. Sophia, Andrew, and Madeline were very excited. They loved flying through the clouds.

When we arrived in LA, we got our rental car after a few minutes of searching for the reservation. Apparently, it was under a different name than ours. The drive to San Diego was beautiful. We drove through the mountains and were able to see the ocean from the highway. Unfortunately, the kids were so tired from the early morning traveling that they were all asleep. Maybe they can enjoy it on the way back.

After checking into the hotel we went for dinner (or lunch according to San Diego time). We had some pizza and stopped at a grocery store to pick up some snacks. When we arrived back at the hotel we explored all the areas of the hotel. Andrew was excited because there is a pool table (which is something he played constantly with while in the hospital). Sophia is excited because there is a pool and hot tub. It was too cold to go swimming last night, but hopefully we will be able to do that today. Madeline is just excited to be in a hotel. She keeps jumping on the bed and then laughing.

Today we head to the San Diego Zoo. We will post some pictures later today.

Andrew Officially in Full Remission

Andrew had a lab draw at U of M Hospital today. They were mainly checking to see if his neutrophil count was still at 1500 or above like it was at his last draw two weeks ago. His neutrophil count this time was at 2200. He has now met all criteria to consider him in full remission. This means they can start reducing his medicine.

The doctors want to keep him at his full dose(1mL twice a day) until his next visit four weeks from now. They want to make sure that his neutrophil numbers stay above 1500 during this time. After the next visit, they will start reducing his medication .1mL per dose every four weeks, and hopefully he will be completely weened off of the cyclosporine over nine months.

We leave for Andrew's Rainbow Connection trip Sunday. The limo picks us up at 5:30AM, we fly out at 8:30 to LA, and then drive down to San Diego, hopefully by dinnertime there. We have a trip Monday to the San Diego Zoo, spend Tuesday at Legoland, and head to Sea World on Wednesday. There is nothing planned for Thanksgiving except for a dinner at the hotel and a possible trip to the beach, and we fly home Friday. It should be a fun trip.

Andrew is back at school (round two)

Andrew started back to school on Wednesday. He had a lab draw on Monday, which yielded good results. Andrew's white blood cells are at 2.5, his neutrophils are at 1.5, his platelets are at 260,000 and his hemoglobin is at 11.2. The doctor was very happy with these numbers. Andrew is still off the neupogen shot (which he is very happy about). We go back to U of M on the 19th for several different appointments. Andrew has to have a series of tests done on his kidneys and then a few lab draws and a regular doctor visit. We will find out on Friday if we can start reducing the cyclosporine.

In other news, we leave for San Diego on November 21st. For those of you who don't know, Andrew qualified for a "Wish" through Rainbow Connection in Rochester, Michigan. His wish was to fly on a plane. So we helped him decide to fly on a plane to the San Diego Zoo. We are also going to Legoland, Sea World and the ocean. Andrew is very excited, as are the rest of us!

Feeling much better

Andrew is feeling much better today. His fever is gone. He rested today at home and should be back in action tomorrow. The doctor at U of M called this morning and said all of Andrew's lab cultures came back negative. His port is clear of infection. We will keep monitoring everything, but as of right now, everything appears to be alright. We will keep you posted if anything changes. Thank you for the prayers and well wishes. We appreciate it!

Unexpected Emergency Room Visit

This has been an interesting night. Andrew woke up a little before 2AM vomiting in his bed. His temperature was 99.5, but within half an hour it went up to 102.8. We contacted the on call hematologist/oncologist at U of M, and she advised us to go to the nearest emergency room. She called ahead to Troy Beaumont, and they were ready for us before we got there.

They drew blood and did chest x-rays on Andrew. The blood counts came back fine(the white blood cells were even elevated), and the x-ray and examination were normal. They did a couple of blood cultures that we will find out about tomorrow. The nurses gave Andrew an anti-nausea medicine, an IV antibiotic, and Tylenol and Motrin for his fever. Around 6:30 the fever broke, and he was discharged a little after 7.

The doctors think that it is probably a viral infection, but it could also be due to a variety of other factors, such as remnants from the respiratory infection he had this past week, the flu shot booster he got this morning, or an infection in his line from when it was accessed Friday.

He is upstairs getting some sleep. Hopefully the antibiotic will take care of whatever the infection was, and he will be fine to go trick or treating around the block tonight.

Today's Hospital Visit Not What We Expected

We went into today's visit at U of M Hospital expecting for the doctors to start reducing Andrew's cyclosporine dosage to begin weening him off of his medication. This is what Dr. Walkovich told us would happen at our last appointment at the beginning of the month. Since then, however, she has done more research on cases similar to Andrew's, and has decided that it would be better to keep him on a full dosage of cyclosporine until his neutrophil count is self-sustained(without use of neupogen) above 1500. Once his neutrophil count stays at that level, they will consider Andrew to have fully recovered because his platelet, hemoglobin(red cell), and neutrophil(white cell) counts will all be in normal ranges. Dr. Walkovich said that, in cases of cyclosporine reduction without full recovery, there is a high rate of full remission that may occur. Conversely, her research lead her to believe that the side effects from prolonged exposure to cyclosporine weren't as bad as she first thought. She even cited a kidney transplant patient who had been on cyclosporine for 12 years and had no major side effects. So they will keep Andrew on the same cyclosporine regimen he is on now until his neutrophil count rises, and, from this point forward, they are monitoring Andrew for any side effects from the cyclosporine.

The doctors also decided to try taking Andrew off neupogen and test his natural neutrophil production again. This is the third time are trying this. The first two times, his neutrophil level plummeted, but they feel his body may be producing more now than it was then. Since it take 10 days for all of the effects of neupogen to wear off, and he got his last injection Wednesday, we will do a lab draw next Monday, November 8, to see where his neutrophil production is at. Because there is a chance that this production will plummet again, we need to pull Andrew back out of school next week and until we get the lab results back. If the lab results are good this time, he will go without neupogen and try to fully recover. If they are low again, he will go back on neupogen and we will try again later. Either way, he will go back to school. This absence should be more temporary. Hopefully he is producing neutrophils at a level where he can be done with injections permanently.

Andrew and Madeline wore their Halloween costumes to the hospital today, and the child life specialists took all of the kids in the child infusion area trick or treating around the hospital. Different departments gave the kids different gifts and toys. One man in the adult infusion area who was there with his wife even started passing out dollar bills to them. Pirate Andrew and Princess Madeline had a blast.

Andrew's test results

Andrew started his second week of school. He loves it! He has really enjoyed seeing all his friends and his teachers. On Tuesday, Andrew had a lab draw at Beaumont. We recently received his test results. His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count dropped slightly from last week. His white blood cell count is at 3.1 and his neutrophil count is at 2000. The doctors want us to continue giving Andrew two doses of neupogen each week. He goes back to U of M to see the doctor at the end of the month.

Andrew is back at school!

On Monday, Andrew was able to go back to school. He was very excited! Here is a picture of him standing outside of Living Word Lutheran School.

Moving On to the Next Phase of Treatment

Andrew had a lab draw at U of M Hospital today. His numbers were similar to other lab draws he has had 2 days after neupogen(he had an injection Wednesday evening). His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count were elevated by the neupogen(4.0 and 3000, respectively).

We then met with Dr. Walkovich. We talked about long term plans for Andrew's treatment. They are pleased with Andrew's progress so far, even though his stem cells haven't started full production of white blood cells yet. The doctors are also concerned about the long term effects of giving Andrew full doses of cyclosporine for more than six consecutive months(he has had it for about five so far). Therefore, they have decided that they will start weening him off of the cyclosporine beginning with his next hospital visit on October 29. The expectation is that, as the cyclosporine level in his body reduces and more t-cells are produced, that those t-cells will no longer attack the stem cells in his marrow that are producing blood cells. They will ween him off of cyclosporine very slowly, probably over 6 months or more, to help to keep this from happening. If he is weened completely off of cyclosporine and his body is still producing normal levels of blood cells, the overall treatment will be considered successful.

Because his body is still producing less than normal levels of white blood cells and neutrophils, which are a type of white cell, he will continue his routine of two neupogen injections a week to stimulate their production. Long term, the doctors are going to monitor his numbers, and when they feel like he may be producing more white cells naturally, we will probably suspend the neupogen and see where he is at. This will be a trial and error process. The doctors aren't concerned with long term effects of using neupogen, especially in the extremely small amounts he is getting it(.05mL twice a week). Also, there is no diminishing return on successive neupogen injections like there was on successive transfusions, so it should work the same no matter how long he takes it. There are people who need to take neupogen daily for years, so there is little danger of him continuing with it going forward. Ideally he wouldn't need it by this point, but doing it this way has fewer risks than continuing full doses of cyclosporine for more than six months.

Since the neupogen is elevating white cell levels and the red cell and platelet levels are back to normal, Dr. Walkovich and the other doctors have decided that Andrew can return to school. He is starting on Monday. His levels are high enough that his risk of virus or infection isn't much different than other children. It is time to integrate him back into normal life. He is very excited that he gets to return to Mrs. McDonald's class. He has been a little upset and moody when his two sisters are in school and he isn't, so this should help raise his spirits.

Andrew's next lab draw won't be until next Tuesday, October 12, and he doesn't have a hospital visit until Octobe 29, so things should be fairly quiet on the medical front for this month. Hopefully all goes well.

Roller Coaster Continues

Andrew had a lab draw yesterday. He has not had a shot of neupogen in over a week, so these results gave a good idea of the white blood cells his body is producing naturally. The numbers were low, with his white blood cell level at 1.3 and his neutrophils down to 600.

The doctors decided today to put him back on neupogen until our next appointment a week from Friday. At that point they will make a determination of where we go from here.

The news is pretty disappointing because it seemed that his body was producing a higher level of white blood cells on its own. We have now gone over a month with his platelet and hemoglobin level normal, and his white cell levels very low. It will be interesting to see what the doctors' opinions are.

Today's Lab Results

Andrew hasn't had any neupogen since Sunday(and only a .05mL dose then), so today's lab results are closer to what he is actually producing. His white blood cell count was at 2.4, and his neutrophil count was at 1500. These results are encouraging. The doctors have told us not to do any more neupogen injections through the weekend, and we will get another lab draw on Monday. By then, all residual white cells produced while on neupogen should be gone, and we can get an accurate assessment of what his body is naturally producing.

Rainbow Connection Walk for Kids

Our family is participating in the Rainbow Connection Walk for Kids tomorrow at the Detroit Zoo. We just received information on the event this week, so we haven't had much time to mention it or the fundraising that goes along with it.

The Rainbow Connection is a charitable organization that provides support and helps grant wishes to children in Michigan with life threatening illnesses. For those who want more information on the charity, you can visit their homepage here. Andrew qualifies for support from them because of his aplastic anemia. We have been talking to them recently, and it looks like they will be granting him a wish in the near future.

To those who would be interested in donating to the Rainbow Connection in Andrew's name, please visit his Rainbow Connection fundraising page here. They put together very nice(and expensive) wishes for children, and have a lot of available services for families going through difficult times. The fundraising page will be up long after the walk tomorrow, so you can make a donation afterwards if you want to.

No Major Changes

Andrew went back to U of M hospital today, and there were no major changes. His platelets and hemoglobin counts rose slightly again. The white blood cell count was 5.0, and the neutrophils were 4100, but that is probably due to the last neupogen injection he got on Wednesday evening.

The doctors want him to get a .05mL dose of neupogen Sunday, then will take another blood count Wednesday before doing any more injections. Hopefully, his body will produce enough white blood cells to keep his counts up.

Tomorrow, our family will be participating in a fundraising walk for the Rainbow Connection at the Detroit Zoo. We will have more information on that later.

More Neupogen Goodness

Andrew was getting shots of neupogen every other day this week, so his white blood cell counts were through the roof again yesterday. His white blood cell count was at 16.3, 10 times that of last week, and his neutrophils were at 14.7, almost 25 times last week. His hemoglobin level remained steady, and his platelets fell slightly, to 161,000. That seems to happen when he is on neupogen.

The doctors want him to take two shots this week, on Sunday and Wednesday, and we will be back at U of M hospital Friday. Hopefully the blood count results will give us a better idea of whether this will work, and how long before we can start reducing his cyclosporin dose. In the meantime, we are spending Labor Day weekend in Caseville.

Update

Andrew had a blood draw last Thursday. His hemoglobin and platelets are in normal range. His white blood cells and neutrophils are still low. The doctors have put Andrew back on the neupogen shot. He takes the shot every other day. Andrew will have another lab draw done this Thursday and he goes to the doctor the following Friday.

Friday's Doctor Visit

Andrew went to the doctor last Friday. His lab results showed that his platelets dropped 40,000, his hemoglobin went up a little, and his white blood cells and neutrophils also went up. The doctor took him off the neupogen shot in order to see where his actual white blood cell and neutrophil counts are. We take Andrew to get a lab draw at Beaumont on Thursday. We will have more to report at that time.

Thursday's Visit

On Thursday, Andrew went to U of M to meet with the Nephrology doctor. He also had his blood drawn for a lab. Andrew's platelets are still on the rise and are within normal levels. Andrew's hemoglobin is at 10.7 which is very close to normal. This is all great news. Unfortunately, Andrew's white blood cells and neutrophils are still low. The doctors feel he isn't responding fast enough so they are putting him back on the neupogen shot. He will take this daily for at least a week.

The nephrology doctor said everything is looking good with Andrew's blood pressure and kidneys. We will need to go back for a kidney ultrasound in about 3 months.

Lab draw

Andrew had a lab draw on Wednesday. His platelets went up about 5,000. His hemoglobin dropped slightly to 9.3. His white blood cells remained the same and his neutrophils dropped back under 500. The doctor wanted us to try one dose of the neupogen to see if that would stimulate his neutrophils. We gave Andrew the shot yesterday and he goes for another lab draw next Thursday.

Andrew Becoming a Celebrity

We were contacted yesterday by Tarita, the woman who set up the bone marrow drive for Andrew at Living Word. They are having a blood and bone marrow drive at Crittenton Hospital in Rochester on August 19, and they want to use Andrew's picture for the fliers to advertise the event. We don't have a lot of details yet, but if you or someone you know was looking to join the marrow donor registry and couldn't for whatever reason, this will be another opportunity. Also, this date is past the eight week waiting period between blood donations for any who donated blood at Living Word and are looking to do it again.

The flier should be done soon, and we will pass it along when we get a copy. It should have all the necessary information for those looking to attend.

Hemoglobin Goes Up for First Time

Yesterday was another full and eventful day at the hospital. Andrew's hemoglobin level went up on its own for the first time, to 9.9. 11-14 is the normal range, so he could be there soon. His platelets also went way up, to 169,000. 150,000 is the low end of the normal range, so his platelets are normal for the first time. His white blood cell level stayed the same, and is still pretty low at 1.1, but his neutrophils went up from 400 to 600. Over 500 is a level where they feel he is fine to fight infections without antibiotics, so the hematologists cancelled those again. We don't have to meet with them for three weeks now. They seem to be happy with the progress he is making.

In the afternoon we had a follow up appointment with Dr. Levine, the bone marrow transplant doctor we met with back in April. He was pleased with Andrew's progress as well. He told us that, since the same stem cells make platelets, red blood cells, and white blood cells, that his numbers, especially his platelet numbers, indicate that his body has the capacity to fully recover blood cell production. While he didn't completely rule out a future bone marrow transplant, he said that, with the production his body has shown, it is an option they would pursue only if something changed significantly in the future. Even then, he would probably do several tests before even considering a transplant again. Andrew's response so far has convinced him that immunosuppressive therapy, even if we had to do a second round of it, is preferable to transplant for him.

Dr. Levine said that they will probably keep Andrew on his full dose of cyclosporine until his white cells and neutrophils get back to normal ranges, then start to ween him off of it. He is recommending weening him off over a period of time of 9-12 months, slightly longer than normal. He said he does this to be a little more cautious and give his body extra time to reintroduce t-cells to the body, and especially the stem cells.

In the meantime, it looks like Andrew will not be back to school full time in the fall, due to possibilities of exposure from other students. He was fine with bringing him at times when Erin felt the general health of his classmates and the school was good. The problem with Andrew going to school full time is that he is more susceptible to viruses that others carry, and that, should he catch something from someone else, it would take him longer to recover. A cold that most people get over in a couple days may take him weeks. This should change as his blood counts continue to rise, and hopefully in the near future they will be high enough to send him back to school full time.

We don't have another visit with the hematologists until August 20, but they will take his blood counts on August 4 and August 11. We will keep you informed when we know what those are.

A litttle setback....

Today Andrew had a blood draw at Beaumont. We have good news and bad news. The good news is Andrew's platelets are still going up. They are at 135,000. The bad news is his hemoglobin dropped slightly and his white blood cells and neutrophils dropped a lot. They are back in unsafe/dangerous levels. As of right now, it appears the neupogen shot did not work. The doctor put Andrew back on three of the antibiotics and we now have to be careful about where we take him and we have to be careful to keep him away from people who are sick. We go to the doctor next Friday to see what all this means. We will keep you updated.

Still on track

Andrew's appointment at U of M went well today. His platelets are up to 100,000. This is a number we have not seen in a long time. His hemoglobin is 9.4, down a little from last week, but not enough to warrant a red blood transfusion. The doctor feels Andrew's bone marrow is making red blood cells, otherwise this number would have been much lower. His white blood cells and neutrophils are high (above normal levels). This means he does not need to take the neupogen shot any longer.

The next few weeks are a "wait-and-see". We are waiting to see if Andrew's white blood cells and neutrophil levels remain up without the help of the neupogen. If his numbers hold after a few weeks, he will be at the three month mark of the treatment. At the three month mark, the team of doctors meet to decide whether he will need a bone marrow transplant. If they feel he is responding well to the treatment, they will start slowly weening him off the cyclosporine (which is the anti-rejection medicine).

The doctors are pleased at how well he is responding to the treatment at this point. However, they always make it known to us that nothing is definite and it does not mean he is "cured". Things can change at any point. We are still very encouraged and very excited about the way the treatment is going. We are hopeful that Andrew is on the right track with the treatment and pray that all will go well for him in the future.

Positive news from Ann Arbor

Andrew had another doctor's appointment on Friday. His blood draw results were very positive. His platelets are up to 70,000, his hemoglobin is at 9.7, and his white blood cells and neutrophils are at normal levels. The doctor gave us the okay to go to Caseville this weekend and enjoy some time on the beach.

The doctor reduced the amount of neupogen Andrew has to take each day and next week he will take Andrew off the shot permanently. The doctor is hoping that Andrew will be able to sustain his neutrophils and white blood cells without the shot. If he is able to do this, the doctor feels a transplant will not be necessary. However, if Andrew's numbers drop back down without the medicine, a transplant will be considered. August will be Andrew's third month on this treatment. At this time all of his progress will be evaluated by the team of doctors working with us and him and a decision will be made regarding the bone marrow transplant. We will know more about the transplant at that time.

Very Positive News

After Andrew's blood counts came in today, the doctors came to see us. They had big smiles on their faces, and Dr. Boxer shook our hands and congratulated us. It turns out that the neupogen, which stimulates the body to make white blood cells, was worth every penny, because in one week Andrew's white blood cell count shot up from 600 to 10,900, and his neutrophil level went from 100 to 8400. These levels are well within normal ranges for a healthy person. They might even be a little on the high side. The neupogen worked so much better than the doctors expected that they decided to reduce the dosage for the injections.

Andrew's platelet level is up another 7,000, to 45,000. His red blood cell level went down, so they decided to give him a blood transfusion today. He had an echocardiogram today to check his heart function and they drew some extra blood for tests in case a bone marrow transplant becomes necessary in the future. We are now just waiting for the transfusion to finish up, and then we will be on our way home.

Everyone is extremely encouraged by today's blood test results. The treatments seem to be extremely effective, and his marrow is producing cells at significant rates as the immunosuppressive therapy progresses. Andrew's platelet levels haven't been this high since our first visit to Beaumont the Friday after Easter. Now that his white blood cell levels are this high, his risk for infection or has gone way down. The risk is low enough that the doctors have suspended use of all of the antibiotics he was taking. Andrew can get back to more normal activities, and doesn't need to be as isolated for now. Even though the white cell production is being artificially enhanced, it makes things much easier on all of us.

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.

More Platelets

Andrew went to the hospital yesterday. He had to have more platelets. It looks like he will need a blood transfusion on Tuesday. His levels were pretty low yesterday and he had a little fever. Hopefully, this weekend will go well. We plan on staying home and getting some things done around the house. We hope you all have a great weekend.

Bone Marrow and Blood Drive for Andrew

Here is the flier for the bone marrow and blood drive for Andrew on June 13, from 8AM- 2PM. We ask that all of you consider joining the bone marrow registry and giving blood if you feel comfortable doing so. Please feel free to print this flier out and post it in places of business, schools, restaurants, and other areas that will help get the word out.

If you are interested in giving blood at this blood drive, please make an appointment on the American Red Cross website here. Click on make an appointment. You will be prompted to create a login profile to sign up for a time. You DO NOT need an appointment to join the bone marrow registry.

They are currently searching the bone marrow registry for a match for Andrew. If the immunosuppressive therapy doesn't work, Andrew will need a bone marrow transplant. Andrew has needed two blood transfusions and almost ten platelet transfusions so far, with many more to come before this is over. Each platelet transfusion supply for Andrew is made from three blood donations, and for an adult, each one is made from five donations.

Therefore, we ask friends and family to help us pay back the American Red Cross and the National Marrow Donor Program, because I don't think Erin and I have enough blood in our bodies to do it ourselves.

Thank you in advance for helping out.



Bone Marrow and Blood Drive

More Platelets for Andrew

Andrew had another blood count this morning. His platelets were at 8000, so they did another platelet transfusion. All went well, and we were finished at the hospital at around 1. There was no meeting with the doctors needed today.

Andrew's hemoglobin level is also reducing, meaning he will need a blood transfusion in the near future. The frequencies of the transfusions are not surprising with this type of therapy. The encouraging facts are that his white blood cell level went from .5 to 1.2, and, more importantly, his neutrophil level went from 300 to 900. The doctors want his neutrophil level to be at or above 500 as much as possible through this process. These rises may be temporary, or they may be good signs. Only a trend over future tests will really tell us.

We will know more Friday, when we go back for a blood count, a meeting with the doctors, and probably platelet and blood transfusions. It should make for a long day at the hospital.

Weekend update

The weekend is over and there is nothing of significance to report. Andrew had no problems, except for pinching both thumbs in separate incidents. He had no troubles with his medication either.

Erin and I spent the weekend working on things around the house to help Andrew. Erin and Shelayne cleaned every toy the kids have with bleach and water. Erin and I cleaned and reorganized the kitchen, getting rid of any older food. We also cleaned the backyard, the basement, and put away everything from the hospital and everything that traveled with the girls over the past couple of weeks. There is now Purell and antibacterial soap at every sink and every entrance to the house. After all of this, we feel much better about minimizing bacteria in the home for Andrew.

We are going up to U of M tomorrow morning to take a blood count. It is very likely that Andrew will need another platelet transfusion tomorrow morning as well.

One visit down, many to go

Our first visit to the doctor at U of M went well. Andrew had to have a platelet transfusion (which we knew was probable). The child life specialist talked to Andrew about accessing his port. He got through this procedure with no pain because they gave him some numbing cream. The doctor gave us two pieces of good information: one, we only have to go to the hospital twice a week instead of three times a week, and two, he noticed that Andrew's blood had young red blood cells. He seemed encouraged by this. Hopefully, this is a good sign. We will have to wait and see.

So Andrew is home, and we don't have to go back to the doctor until Tuesday morning. We are all together again. If all goes well, this weekend will be quiet and boring.

First doctor visit after leaving the hospital

We are at U of M hospital meeting with Dr. Boxer, the new hematologist. Andrew's platelets are at 19,000 so he needs another platelet transfusion. While at U of M, we also met with the nephrology nurse practitioner. She told us that Andrew will need to be on his blood pressure medication for two weeks before we see any regulation in his blood pressure. We are sitting in the pediatric infusion center waiting for the platelets. Andrew's port will need to be accessed for the first time since leaving the hospital. He has a special numbing medication,which should make the poke less painful.

Thank You!

Chris and I know we have a long way to go with Andrew's treatment, but we wanted to take this time to thank you for your kindness during this difficult time in our lives. We have felt so loved and supported by everyone. Words cannot express how grateful we are to everyone who has helped us in anyway....we cannot thank you enough. We are so blessed to have such a wonderful support network.

We spoke too soon....

I just got a call from the doctor at U of M. Andrew's cyclosporine level is too high and the nephrology doctors are concerned because of his hypertension. I need to take him into Beaumont tomorrow morning before administering another dose of medicine. The doctors at Beaumont will test Andrew's levels to see if they are in the normal range. If they are too high, they will have to adjust the dose amount.

You Know We Love You, But...

We will be home from the hospital tonight, and we know there are a lot of people who want to see Andrew. Unfortunately, Andrew's access to other people will be extremely limited in the next few months. The only people who will really get to see Andrew in the near future will be us, the girls, and his grandparents, and that will be almost entirely when they help us with child care.

We have to limit Andrew's access to possible viral and bacterial infections because his immune system is not only weak, but it is also being suppressed. In the protocol article the doctors gave us about immunosuppressive therapy, 6 out of the 62 patients studied for the paper died within 6 months. All 6 deaths were due to "opportunistic infections". Therefore, we have to limit his opportunity to contract these infections the best we can.

Each person comes in contact with dozens of other people over the course of a week. Each of these contacts is a possible source of a virus being spread. Someone you talk to could go a week without getting sick, but still could have spread the virus to you. You can then spread it to him a week before you feel ill. So if we let all the people who want to see Andrew come over to our house, and each of them have been in contact with dozens of people who are possible spreaders, we increase the pool of contacted people to thousands, of which one needs to be sick to spread something to him.

Andrew will contract things that most people's bodies fight off without them knowing, because his immune system is so low right now. Therefore, while we would love to see everyone, we just can't do it.

The rest of us will be more isolated too for the immediate future. Erin, Sophia, Madeline, and I will be doing our best to limit our own access to others, especially when summer vacation starts in a couple weeks. Since we will be around Andrew the most, we will try to have the least contact.

So please understand if we say no if you ask to come over, or don't invite you in if you drop something off. Also, don't be offended if we can't make it to your barbecue or birthday party, or if we say no to playdates or golf. It is not that we don't want to; we are going to be losers until the doctors tell us otherwise for Andrew's sake.

Heading Home Soon

We are officially going home! The medications are done, and we have already picked up the antibiotics and steroids from the pharmacy. We are only waiting for discharge papers and for the blood pressure medication to be ready at the pharmacy. Once the discharge papers come, the nurse get the fun task of removing the needle from his port. He hasn't had it done yet, so it should be interesting. Directly after that trauma, we will get to walk out to our cars and go home.

Where We Go From Here

Here is the basic schedule, or at least as much as we know, for the next few weeks as we transition the treatment from the hospital to home.

Andrew will still be on a steroid treatment and taking cyclosporine at home. The steroid treatment will last about six weeks, four weeks at treatment levels, then weening him off for two weeks. He will take cyclosporine for months to come. These are to reduce and regulate the T-cells in his body. The T-cells are the first line of defense in the body, and they believe these are contributing to attacking his marrow. The steroids also help to reduce the side effects from the Thymoglobulin, called serum sickness, that can last for two to four weeks after the treatment.

On top of those medications, Andrew is on an extensive antibiotic regimen to help fight against viruses he might get in the future. Since the T-cells are suspended, his body needs help against all type of bacteria and viruses. Also, he will be taking a blood pressure medication since one of the side effects of the steroids is high blood pressure. There are probably other medications as well, and others may be added(for instance, there is a remote chance he may need insulin).

We will be at the hospital Mondays, Wednesdays, and Fridays to start, then probably reducing to twice a week in the future. We will start at U of M hospital, but as things settle down we may go to Beaumont when he only needs blood count checks.

At the hospital, blood and platelet transfusions are always possible any time we go in. That will be determined by his blood count that day. Other procedures and infusions are going to happen on these visits as well. We don't yet know what those will be or how often they will be.

This Friday, we meet with a couple of doctors who have concentrated their studies on aplastic anemia, and will give us some more details about the rest of this process.

Long term, they don't expect to see any results for at least two months, it will probably be more like three, and it could be several months after that to see any real progress. That means that it could be a while before we know whether this treatment is going to work or not, and whether we have to move on to a bone marrow transplant from an unrelated donor. The recovery process is much slower for the immunosuppressive therapy than for a transplant.

We will send out a post later in the day regarding home life, and life in general, for our family in the coming months.

Saved at the Last Second

They weren't able to clear Andrew's central line, so the surgeon decided at around 8 that they would have to install a new one, and set him up for surgery at 10:30. The resident came to tell us this, and found Andrew in the middle of eating breakfast. Since you can't have any food for six hours before the surgery, they had to push it back to 2PM. This put the possibility of us getting discharged today in doubt.

At around 8:30, the nurse came in to try clearing the line one last time before she disconnected the apparatus, and it worked! Now the central line is fully functional, surgery has been cancelled, and we need to go get Andrew another breakfast. We are back on schedule for leaving today. Special thanks to "Nurse Stephanie" for saving us.

Still Trying

Andrew's central line still has a blockage. The doctors and nurses are still working on clearing it. It doesn't seem like they are used to a line not unclotting like this. We will see what happens this morning.

They installed an IV into his hand at around 2:30 this morning, and are putting his medications through that for now.

We are hoping to get out of here today, because they have told us we are next in line for a roommate.

Back to the "Arm Poke" IV

The port is still clogged somewhere, so they are on their way up to install an IV into his arm tonight. He needs this for the medications he has to take until the port is working again. Andrew wasn't excited about this prospect, but it is necessary until they can x-ray the port sometime tomorrow.

Nothing Is Ever Easy With Andrew

After three uneventful days, I guess we needed a little excitement around here. First, the high blood pressure that brought on an ultrasound and medication. Now, the port has seized up. The port is the permanent IV in Andrew's chest that is used to put medicine into and take blood out of his body. There is some sort of blockage somewhere along the way, and the nurse's efforts so far have been unable to clear it.

Now it looks like we may have to do one of two things tonight. We will either have to replace the needle and tubing going into the port, which would mean re-accessing it with a new needle. The other option is to go to x-ray tonight so they can find the blockage.

Through everything, we are still scheduled to leave tomorrow. Tonight could just be a late one.


UPDATE: If they find out that the blockage is inside the port itself, and they are unable to get it unclotted, they will have to install a new port. Surgically. Tomorrow.

Kidney and blood pressure

Andrew's ultrasound is finished and they will be analyzing the kidney pictures soon. I met with a few doctors from the pediatric nephrology (kidney) department. As of right now Andrew will be on a medication to regulate his blood pressure. Chris and I will also be trained in using a blood pressure cuff and a stethoscope. We will need to document Andrew's blood pressure twice daily. We are definitely learning a lot about medicine and medical procedures....much more than we ever wanted to know!

On a fun note....Andrew was able to play with Teddy the therapy dog today. Teddy is an 11 year old golden retriver who visits Mott patients on Tuesdays.

High Blood Pressure

A doctor came in to check Andrew's kidney function. The kidneys play a key role in keeping a person’s blood pressure in a healthy range, and blood pressure, in turn, can affect the health of the kidneys. High blood pressure, also called hypertension, can damage the kidneys. Andrew will need to have an ultrasound of his kidneys in order to rule out a problem. The doctor feels his high blood pressure is most likely related to the medicine and not his kidney function, but she wants to double check in order to be sure.

Fifth treatment

Andrew started his fifth and last treatment today. They have recently stopped the treatment because Andrew's blood pressure is too high. They have given him a medication to help bring his blood pressure down. If the medication works, they will resume the last treatment. Hopefully, this does not hinder us leaving tomorrow. More to come...

Fourth Treatment, Sixth Platelet Transfusion

Day four of treatment is halfway finished, and Andrew has shown no real reaction to the Thymoglobulin so far. While there is the possibility of a reaction still, the doctors say that the chance now is very unlikely. If there is no reaction, fever, or infection of any kind that develops, we should be discharged sometime Wednesday, and going back home.

Tonight, Andrew will need another platelet transfusion. They are trying to keep his platelet level elevated above 40 during treatment; hence the frequent transfusions. Once we go home, they will only transfuse if the level dips below 10.

Chris and Erin are taking turns working; Erin is at work today, Chris will work tomorrow. It is somewhat back to normal life after this crazy last week. There will still be an adjustment period, and Andrew will still be coming back three times a week for checkups and procedures. But at least everyone will be back together as we move on to the next phase in this treatment.

Third treatment

Andrew went through his third treatment without a problem. He is getting used to taking the medication and being hooked up to his machine for many hours at a time. Everyone at U of M Hospital has been outstanding, especially the nurses. Thank God for nurses!!!!

Platelet transfusion

Andrew's platelets dropped last night. They had to give him another platelet transfusion around 11:00 pm. Other than that, day two of treatment went well. U of M has a playground on the roof of the hospital for the pediatric patients and their families. The girls are going to come visit Andrew today and we are going to go play at the "roof park".

Go Blue!

Andrew was just visited by Lloyd Carr, Mike Hart, Chris Perry, Adrian Arrington, and John Navarre. They signed a Michigan towel for him and gave him a Michigan bear. Andrew was doing fine until the photo. He got a little scared because some of these guys were pretty tall. Chris was rather excited AND Erin was too because Lloyd Carr knew where Lutheran Northwest was!!!!

Day two of treatment

Andrew started his second round of treatment. He is doing well. I think he might have a little "rabbit" in him. Check out the video of him playing basketball with Chris.

First day

The first day of treatment went well. Andrew had a minor reaction (blotchy skin and complaining of itching) right before bed that was cleared up by a little Benadryl. Everything else went pretty smoothly. Everyone is taking really great care of Andrew. The nurses are awesome and the child life specialists got him to take his medicine. We will let you know how day number 2 goes.

Andrew's bandages changed for the first time....

Ouch! Enough said....

Two hours in

We are two hours into the treatment. No complications or reactions. Andrew has had two steroid treatments which has made him a little (okay, maybe 'very') irritable, so getting him to take oral medication has been a challenge. Luckily, U of M has Child Life Specialists who can talk with Andrew about taking medication and put it in "four-year-old" terms. Other than that, the treatment seems to be going well.

Finally

The first treatment session has begun! They started the Thymoglobulin at around 11, and it should last about six hours. So far he has no discernable reaction, which is good. Reactions usually happen in the first 15 minutes, and we are 20 minutes in already.

Pushing Treatment Back, One Last Time

Andrew needs a platelet transfusion before beginning immunosuppressive therapy (IST). We are waiting on the platelets, then an hour or so for the transfusion, then a quick steroid, and then we will be ready to begin the IST. Should only be a few hours total, but the good news is that it will be given today.

On another encouraging note, Andrew will be lifted from his quarantine as soon as the IST is finished today. They never found any sign of infection or virus to be of concern.

Andrew unplugged

Andrew was finally unhooked from his IV for a few hours. He was very excited. We were able to get some hockey sticks and he played a game of hockey in his room. Andrew is feeling good. Tomorrow he starts his treatment.

Horse Serum. Rabbit Serum.

The doctors and pharmacists have decided to change up the treatment a little bit. The main change is that, instead of going with the equine-based ATG(Atgam), they will use a rabbit-based ATG serum(Thymoglobulin). The Thymoglobulin is less reactive than the Atgam, and still works the same for the purposes they need for Andrew. The only two drawbacks, and they are minor, are that the Thymoglobulin treatment takes 5 days instead of 4, and the Thymoglobulin is more expensive. Since the majority of people don't have a significant reaction to Atgam, they use it first.

Since it is probably too late in the day to start a treatment, we are pushing back the start of treatment(again) until tomorrow morning. As an extra precaution, they are giving Andrew an extra steroid treatment, as well as some other antiobiotics. The Thymoglobulin treatment should start around 9 or 10 AM, and last for 6 hours.

I know that this process may sound frustrating to everyone reading this, but the doctors have been reacting well to changes in Andrew's condition, and changing the plans accordingly. Yesterday, one of the nurses told us that there were so many orders put in and then cancelled in his file that she wanted to verify things with the doctors directly now. Issues have come up, like previously unknown surgical tape allergies, the periodic fevers, and the reaction to Atgam, and the medical staff has taken precautions to deal with each of them. We are still confident in their abilities and in the process, even though the changes have been frustrating at times.

Also, if you ever have any questions regarding this process, feel free to write them in the comments section, and we will try to answer them. Sometimes you maybe stumble on something we completely overlooked.

Andrew Reacts to Test Dose

They gave Andrew a test dose of the ATG on his arm around 1:30, and his arm reacted to it and developed a rash. The hematologists are meeting with each other and consulting the pharmacists to figure out what might have happened and come up with a course of action.

ATG is literally an equine serum that is developed in and extracted from horses, it is possible that he is reacting to a protein in the horse, the active ingredients, or some other additive. Basically, we don't know right now, and the impression we get from the doctors don't make us believe that they know.

So everything is on hold right now with treatment while the doctors try to figure things out.

Treatment Begins

Andrew has been cleared to begin treatment this morning. They will give him a test dose starting in the next hour or so, see how he reacts, then give him the infusion. The first infusion will take 8 hours. They will do the same thing(minus the test dose)for the next four days.

The main drugs in the infusion are ATG, which makes antibodies against his lymphocites, and cyclosporine, which is an anti- T-cell prolifersation agent(helps prevent rejection).

Andrew is still under quarantine, even though all of the cultures taken have come back negative. They will probably have him confined to his room for one more day. It is actually a good thing for a couple of reasons. One is that the nurses have to take vitals frequently the first day to monitor for any side effects, so he would have to return to the room every 15 minutes or so anyway. The other reason is that this floor of the hospital is at capacity, and the only rooms that don't have two patients are the ones with people under quarantine. They even had to take the other bed out to use in another room, so Andrew has a play area in half of the room.



Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)

Another blood transfusion

Andrew had lots of visitors today. Grandma, Grandpa, Yia Yia, Papou, Uncle Sean, Auntie Sara, Auntie Lo Lo, Sophia, and Madeline all came to see Andrew today. It was nice to see and spend time with family.

This evening he spiked a little temperature which they are monitoring. His hemoglobin level dropped and he had to have another blood transfusion.

If all goes well with the fever and the transfusion his treatment will begin tomorrow morning.

Contacting Andrew

Now that we are settled in, it appears that Andrew will have a lot of down time during the day. There are a few ways to contact Andrew(or Erin and Chris) for people looking to do so.

If you want to send Andrew mail, here is the mailing address for his hospital room:

Andrew Miller Room F7519 Bed 2
F7689 CS Mott Children's Hospital
1500 E. Medical Center Drive
Ann Arbor, MI 48109-0246

Andrew's email address is three.silkies@gmail.com.

We are also set up on Skype through Erin's address, millererine. Any of his family or friends that want to do a videoconference will him can try to contact him that way.

Therapy Pushed Back

The hematologist working the hospital floor this week, Dr. Jasty, has decided to wait for the blood cultures to come back negative for any kind of virus before starting treatment. Because the cultures were taken last night, and typically take about a day to develop, we will be delaying the start of immunosuppressive therapy at least until tomorrow morning. Dr. Jasty wants Andrew in the best possible health when we begin the next phase.

It looks like we will have to do another blood transfusion at some point today. His red blood cell levels are just a little low.

On a good note, Andrew seems to be building energy as the morning rolls on. He has been talking (while eating) for the past 10 minutes straight right now, and is singing songs and playing with his Thomas the Train sticker book.

Some good news

Andrew was able to sleep most of the night. Having the port helps because they can draw blood and give antibiotics without poking Andrew or having to hold his hand (the one with the IV) down. Andrew's fever is gone as of right now. YEAH! And he looks a lot better. The color is back in his face and his skin isn't red and blotchy anymore. He is also in better spirits this morning. He will have a blood draw soon. Depending on how those tests results come back, he should be able to start his treatment this morning. Andrew is still in isolation, which means he can't leave the room, but we just bring the fun to him. We have played countless games of Zingo and Crazy 8's and have watched Scooby Doo and the Pirates about five times. Praise God for Andrew's great attitude! We are so proud of our brave little boy.

Complications

Andrew has recently developed a fever. They took a blood culture because they are worried he has some sort of virus or bacterial infection. Andrew is quarantined to his room for the next 24 hours while they rule out a few things. Everyone on his floor is considered immuno-compromised (including himself) so he needs to stay away from everyone else. They have given him a wide-ranging antibiotic to fight whatever is attacking his system right now.

Surgery Is Successful

The doctors just came to the waiting room to tell us that the port placement surgery was a success. They have placed that along with an access tube in order to more easily administer medications, transfusions, and other things over the coming months.

Andrew is still asleep under anastetia, and they say it will be another 30-45 minutes before he wakes up. We will be able to see him then.

He will get most of the day to recover, barring any need for another transfusion. Treatment should start in the morning.

Andrew's Port Placement

Andrew went into the operating room around 10:30 for his port placement. The surgery will take about 1 hour. He was riding in style in his wagon!

Port at 10:15

The operation to install the port is tentatively scheduled for 10:15 this morning. It should take around 45 minutes. They are doing another blood count now, but everything should be good. He needed a 50,000 count on the platelets before they would do surgery, and he was at 49,000 after the first platelet transfusion. They did a second one, so his numbers should come back well within range.

If all goes as planned, the treatment phase will start tomorrow morning.

A Long First Night

It is about 10PM, and there is still much to do tonight. Andrew had a platelet transfusion, and is about one hour into a three hour blood transfusion. An hour after that is finished, they will do another blood count. If the platelet level is still below 50 (and they suspect it will be) they will give him a second platelet transfusion. Provided they can finish that and get in yet another blood count before 7:30 tomorrow morning, they will take him in for the operation to install the port. If not, they will wait until Wednesday for the operation, and push back the start of the treatment until Thursday.

To make things harder on Andrew, they just gave hime three different antibiotics. I think he is finished with all medical science for today. Hopefully tomorrow will be a little less demanding on him.

Two Transfusions

Andrew needs both a blood and platelet transfusion tonight. They are starting with the platelets soon, and the two will take a few hours combined.

Well...

Today didn't go as planned. We received a phone call early this morning saying the U of M doctor we were supposed to consult with was sick. They wanted us to reschedule for Friday. We insisted Andrew needed his blood levels checked. We went to Beaumont for a blood draw and found that Andrew's platelets were at 7,000 (normal levels are about 200,000), and his white and red blood cell counts were lower than ever. The doctors at Beaumont were able to contact U of M and get Andrew admitted into Motts. We are at Motts right now waiting for a platelet transfusion. Tomorrow he will need a port put surgically into one of his larger veins. On Wednesday they will start the medicinal therapy, and we will be here approximately five more days.

On our way....

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7).

We are packed and ready to go. Our first appointment is at 10:30 for a blood draw and the next one is at 11:30 with the new doctor. The rest of the day is unknown. We will keep you updated.

Together At Last

Yesterday was the first time in over a week that all five of us were able to spend some time together. First, Sophia came down with a cold last Friday. Because Andrew's white blood cell counts are so low, we decided to send Sophia to Erin's parents' house for a few days until she got better. Then, as soon as she came back home, Madeline came down with the same cold, and spent time with both Erin's and Chris' family members. She was better yesterday, so we were able to bring her home.

It was nice to let the kids play together(and with us) before Andrew has to spend time in the hospital. It was especially nice that this fell on Mother's Day, and we were able to spend it as a family, which has become a much rarer occurrence lately.

We would like to thank all of the people who helped us with watching the children last week. We needed two separate people for child care through most of the week, and several people stepped up and helped, some of them on almost no advance notice. Also, we would like to thank the dozens of people who have already helped us in other ways. Whether it was through time, food, gift cards, items for the hospital, well wishes, and especially prayers, our support network has been amazing so far, and we thank all of you.

No Match

We found out this morning that neither of the girls match Andrew's tissue type.  The transplant from a sibling would have been the best treatment method, but now we are on to immunosuppressive therapy. 

We are meeting with Dr. Harris, a Hematologist/Oncologist at U of M Hospital, on Monday morning.  Later that day, Andrew will be admitted to the hospital to begin the treatment.  He will be in the hospital for at least the rest of the week. 

In the meantime, they will be looking for an unrelated donor for a bone marrow transplant.  Dr. Levine, Dr. Jamil, and Dr. Harris believe that this treatment would be preferred to immunosuppressive therapy if they can find a matching donor.  For anyone willing to join the bone marrow registry, we would encourage you to go to http://www.marrow.org/ to find a registry drive in your area. 

Platelet Transfusion

Yesterday, Andrew had to have a platelet transfusion. He was scared, but very brave. Chris brought him into the doctor and his platelet count was 15,000. Dr. Levine and Dr. Jamil recommended a platelet transfusion. Andrew also had a fever that was fluctuating. A lab was taken to see if he has an infection in his blood. If he has an infection, he will have to be treated with antibiotics in the hospital. We find that out today.

Andrew also went to U of M Hospital for a different lab. This lab is to test for genetic aplastic anemia. After the lab, Grandma took Andrew for a milkshake and to see the Big House. Go Blue!

We should find out on Friday whether one of us is a bone marrow match for Andrew. We will keep you posted.