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.