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Sunday, February 20, 2005 9:11 PM CST

Hi Everyone,

Matthew had a check up with Dr. Kurtzberg at the end of January, and everything went great. This was the first time at Duke where I was not pushing Matthew around in the stroller. He was doing so great on walking and running everywhere and I felt so comfortable letting him be on his own. The nurses could not believe it was Matthew strutting his stuff down the hallway.

Dr. Kurtzberg wants him to start getting his vaccinations in March. She will see how he is handling them when she sees him again in May for his two-year post-transplant check up. We only have one medicine left that we give three times a day, and that is being weaned down. What a great feeling to have gone from so many medicines to being on one small oral med -- fantastic.

Dr. K said Matthew is allowed to start school in the fall. We will be transitioning the therapies he receives through our county from home to school, since they only work in the home until age three. Matthew will be turning three this June. Matthew has two physical therapists, two speech therapists, one occupational therapist, one vision therapist and a transition therapist getting him ready for the classroom and what will be expected of him in the school environment.

It is hard to believe that a little school bus will pick him up at the door, take him to school, and bring him home. I think I will be driving him for a while until I get comfortable with that. The teachers tell me a lot of parents drive the kids at first, and then graduate to following the school bus until they become comfortable enough to let him go on their own. Hopefully it will be harder on me and that Matthew will love it.

We still see the neurosurgeon at Children's hospital every six months to check out Matthew's head. He falls and bumps his head like any two-year old, but hopefully his brain has had a chance to expand. I think the change to a programmable shunt to allow more protective fluid and the time since his chemo have helped give him more protection. He also knows how to use his hands to catch himself if he falls. But it still gives me a lot of stress when he falls.

Matthew is growing so much, but still has a ways to catch up to his twin brother. He tries to keep up with everything his brother and sister do. He loves playing with the therapists when they come to the house. He is getting better on the stairs, but I can't let him do it on his own.

We will get some new pictures posted soon.

-- Peggy

Sunday, October 24, 2004 10:13 PM CDT

Hi everyone. I'm sorry it has taken so long to post another update. I don't know if I remember everything that has happened since the last post!

Matthew had his central line removed in July because the infection was getting worse. The doctors wanted to wait for the infection to pass before we considered a port. Since he was doing okay without the line and we were stopping the only daily infusion, we decided against getting a port. He needed a monthly infusion, but that only lasted a couple more months. He also had to have a weekly blood test, but the lab we used was pretty good about drawing his blood. During our visit to Duke in September we had our last monthly infusion.

This month we got an okay to go to monthly labs. His labs are looking really good. We have been dropping a lot of the medications too. He is only on three medicines now.

We see the doctor at Children's this week about his head injury. Overall it is fine, but the area where his skull was cut for the surgery has sunken in. The doctors say it is okay and don't recommend another surgery, but we need to be careful about the skin where it sinks in. It could become injured very easily.

We are probably going to try a helmet for Matthew around the house. He really is getting mobile, and it is a lot of work to keep up with him and keep him from falling. Of course his brother Sean is starting to push and play with him and that just makes it worse.

Tori is taking a weekly Spanish class. We thought it would be good for her to start interacting with other kids before she starts school. Plus it can't hurt for her to pick up some Spanish. She likes watching Dora the Explorer on TV. Even Sean and Matthew are picking up some of the words.

In a lot of ways our life seems to be getting "back on track" (whatever that means). It took a sharp detour in Spring of 2003, but now that Matthew is progressing life seems more normal. It makes me worry what's next. I guess it is good not to assume too much about the path our lives will take, and to thank God that we can feel "normal" again.

I found out this week that a college friend's husband is undergoing chemotherapy. He woke up one morning earlier this year and couldn't hear. It turns out he has a brain tumor. Please say a prayer for him and his family.

I posted some new pictures in our photo album. I'll try and post more often!

As I was writing this, I heard on the news about the Hendrick Motorsports plane crash. We had visitors from Hendrick Motorsports while Matthew was on the unit at Duke, and they even sent Cheetos last year. I wonder if anyone on that plane visited Matthew. They really care about all the children at Duke. Please say a prayer for their families.

-- Eric

Tuesday, July 13, 2004 8:56 AM CDT

Hi everyone. I'm sorry I haven't updated in a while. I have more to tell you about, but want to get this posted for now.

We had our one-year checkup at Duke the second week in June. While we were there, Matthew got sick and was diagnosed with an infection in his central line. We had to stay a couple extra days, but they gave us some new medicine to help knock it down.

It seems like the infection may still be with him though. He is acting great, but we just did a new culture that came back positive. So we are back on the new medicine.

During the one-year checkup, Matthew saw an orthopedic doctor. The doctor said he didn't see any problems, and Matthew should develop normally. His back has really straightened out since the transplant.

He is really progressing with walking and talking. It is great to see him in such great spirits.

We had a birthday party on June 27th for all our kids. (The twins' birthday is June 3rd and Tori's is June 19th.) The family and some friends helped celebrate. We all had a great time, and it was good to visit with everybody.

I hope to have new pictures up soon.

-- Eric

Sunday, May 23, 2004 2:16 PM CDT

T + One Year!

Today is the first anniversary of Matthew's transplant. It seems like ten years sometimes. It's amazing how much has happened and how many great people we have met in just one year.

It is also overwhelming to think of the pain we've seen and felt for the families of kids who didn't make it and those who are still facing tough challenges. Please remember to pray for all those families.

Remember the doctors and nurses too, as well as the hospitals, schools, and our country that have made miracles like Matthew's possible.

Matthew is really doing great. He was released from the hospital on Wednesday, May 12th. He is already walking and acting as if nothing happened. Of course we follow him around to be sure he doesn't get into trouble again. He still has his brain shunt, but they put in a programmable valve so they can control the amount of fluid. They hope to prevent the shearing that may have caused the bleeding.

We were looking forward to getting his central lines out so we didn't have to worry about him so much -- so much for that! Now we have to worry he'll fall again. On the day he fell, while he was being loaded into the Medevac chopper, all I could think was "if we lose him over a stupid fall, after all we've been through, I don't know how I'll handle that."

Luckily everything has turned out okay. I'll try and add some new photos later this week.

Thanks,
Eric

Tuesday, May 11, 2004 10:21 PM CDT

Hi everyone. Matthew will probably be coming home on Wednesday. He had his brain shunt replaced on Monday and he seems to be doing well. We will be happy to have our family back together again. We are grateful to everyone who has helped out.


Thursday, May 6, 2004 5:36 PM CDT

Just a quick update. He was moved out of the PICU Wednesday night into his own room. He slept all night and is starting to eat some. He seems to be his normal self.

They are keeping him over the weekend to check his brain shunt and see if he still needs it or if it should be replaced.


Wednesday, May 5, 2004 1:44 PM CDT

Well, I knew things were going along too well. On Saturday, May 1st, Matthew was enjoying his freedom after his morning IV. He has been doing great with his physical therapy, and has been learning to climb up onto things, like the stairs, coffee table, and the kitchen chairs. In fact, we normally pick the kitchen chairs up and put them on top of the kitchen table so he won't climb up onto the table from the chairs.

Peggy was about to do this, but she took the dirty breakfast plates over to the sink first. When she turned around, Matthew was already up on the chair. Then he fell. He fell on a rug, but there is hard tile under that. He cried right away, which is usually a good sign. I came upstairs to see what happened. I took him from Peggy and tried to calm him down. Then he started throwing up on me.

Peggy took him upstairs to clean him off. She called to me that he didn't look right and was acting very lethargic. We decided to go to the emergency room, so I called our local doctor and she arranged for his arrival at Shady Grove hospital. Peggy's sister Cathy was set to meet us there to take care of Sean and Victoria. In the rush to get to the hospital, we didn't even get shoes on them.

When we got there they did a CT scan and saw bleeding in the brain. They decided he should be sent to Children's Hospital in DC by Medevac for surgery. Peggy rode with him in the helicopter. He actually fell asleep from the motion and noise.

The neurosurgeons at Children's were great. They did surgery Saturday evening that lasted over three hours. They had to cut his scalp, remove a large piece of skull, and then peel back the lining of the brain to drain the blood. They inserted a drain tube then closed everything up. They also had to pull the abdomen end of his brain shunt out so they could control that. Matthew was taken right up to the PICU from there. He was on a ventilator and sedated at first, but they removed that Sunday night. It was wonderful to hear him say "Daddy" again.

The doctors say his prognosis is good. They don't think there will be any brain damage or problems from this incident. Apparently, because of Matthew's chemotherapy in the past year, his brain is shrunken in size. That made it easy to move too much and caused shearing. That's what caused the bleeding. But it also allowed for more bleeding without causing too much pressure.

Matthew really makes friends wherever he goes. The nurse at Shady Grove's ER who helped us on Saturday stopped in to see him on Tuesday. She was at Children's for a class, and wanted to see how he was doing. One of our physical therapists also came to the PICU to see Matthew. We are thankful that so many people care so much about Matthew.

He is still in the PICU on Wednesday morning as I write this. He just had his third CT scan. There was no more bleeding in his last CT scan on Monday, but there were some air gaps that need to be reabsorbed. He is awake and seems to be himself, but he has problems sleeping at night. After he is able to move out of the PICU, he will need to have his brain shunt replaced.

I'll try and update later this week. -- Eric

Wednesday, April 14, 2004 11:26 AM CDT

Hi. I hope everyone had a happy Easter.

As I mentioned last time, we are in the middle of weaning Matthew from his steroids (solumedrol). Also, he has been on oral tacrolimus (FK506) for about a week. We only have one IV to run through his central line, the magnesium in the morning for two hours. The solumedrol is still given through his lines in the morning and at night, but this Thursday (if everything is going okay) we should be going down to once a day. It's great that he doesn't have to spend so much time in his highchair.

Matthew really likes to feed himself now. For breakfast he usually has some Cheerios that he eats out of a cup. He also uses a spoon with his "Yo Baby" yogurt. It drips all over the tray and his bib, but he enjoys doing it himself. He is even drinking from a sippy-cup on his own.

Matthew is also picking up and repeating words. He knows and says one of his physical therapists' names -- Amy. It is really cute when he says it.

On the down side, we found out two weeks ago that one of our favorite dogs, Princess, has leukemia. The vet originally thought she would go downhill fairly fast, but she is doing okay so far. She went blind shortly after the diagnosis, but has adapted. We brought her inside the house with our older dogs, and are spoiling her with steak and ground beef. We thought we were ready to put her to sleep twice last week, but she has rebounded and is in great spirits. The vet thinks the Prednisone she put her on has helped relieve some of the swelling and pressure.

Until next time...
Eric

Wednesday, March 17, 2004 1:29 PM CST

Hi Everyone.

We are at Duke today for Matthew's 9-month post-transplant check-up. We came down on Monday for tests on Tuesday and Wednesday (today).

Overall Matthew has been doing well, but he has been vomiting quite a bit lately. Our family had a 48-hour bug last week that Dr. K thinks was rotovirus. Our other kids are over it now, but it seems to be hanging on with Matthew. He hasn't been keeping much down.

We were supposed to leave after a CT scan today, but Dr. K wants to give Matthew some IV fluids to re-hydrate him. She thinks that will help him get over the rotovirus. I think we'll be able to leave this evening.

It looks like we are going to try to start weaning him off his IVs and use oral meds instead. We still give two IVs in the morning over two hours and one at night over 1.5 hours. It will be great when we can finally remove his central line. Dr. K said maybe while we are at Duke for his one-year post-transplant studies.

Matthew has been walking on his own, traveling about 6 to 9 feet without falling. He is saying more words now too. Having a twin brother for some sibling rivalry keeps Matthew pushing to the next achievement.

We really appreciate everyone who signs our guestbook and checks in every once in a while. I apologize that this journal doesn't get updated that often. Between caring for Matthew and two other children under age 4, caring for our collection of dogs and cats, and trying to run our business, we don't have much spare time. We're also sorry we haven't been keeping in touch with so many of the friends we made here at Duke.

God bless you all, and Happy St. Patrick's Day!

Eric

Monday, January 26, 2004 6:34 AM CST

Matthew's hernia surgery went well last Tuesday. The doctor doesn't think we will have problems with his shunt catheter again. Matthew came through the surgery like a trooper. Peggy reminded me that this was his seventh surgery. I'm glad he is so young that he will probably not remember any of this.

Unfortunately, we discovered that his central line is contaminated with the FK506 again, and giving false readings. Luckily he is still getting a high enough dose, so we haven't increased the FK506. In fact, Dr. K decided to drop one of his IV meds. We dropped the Foscarnet, which is an anti-viral medication. We were getting it in case Matthew had CMV, but he has never tested positive for it. We have a new oral med in its place, but that is easy.

We met with the eye doctor on Wednesday, and that went great. His eyes have really improved. They are still cloudy, but are much better than before the transplant. Hopefully they will continue to clear up.

We got to see Andrew Himes and his family at the eye doctors. It was great to see him running around. It gives us hope that we will see Matthew that active some day.

-- Eric

Sunday, January 18, 2004 12:41 AM CST

Well, I thought I'd give everyone a quick update. We are currently at Duke waiting for another hernia surgery for Matthew.

On January 8th in Maryland, Matthew had his weekly visit with Dr. Plotsky. She discovered that the catheter from his brain shunt had migrated into his scrotum again. We were originally scheduled to visit Duke earlier this week, but that was put on hold while they arranged for a new hernia surgery at Duke.

We came down on Thursday the 15th for a meeting on Friday with the surgeon, Dr. Rice. He performed Matthew's last hernia surgery. He seems very confident that this surgery will prevent this from happening again. Matthew will have surgery Tuesday morning, and if all goes well we will return home on Wednesday.

We also had Matthew's hearing tested on Friday. He seems to have normal hearing from what they can test on a 19-month-old. We will see the eye doctor on Wednesday before we leave.

Last week, Sean had a runny nose and the start of a cold, and we were having a hard time keeping Matthew away from him. Thanks to Aunt Susan and Uncle Bernard who took him on January 6th to help us. He went to Aunt Rose and Uncle Al's on the 10th and is still there. Thanks! We all ended up with colds anyway, but kept Matthew protected. Thanks to Bill for watching the dogs, cats, and house while we are at Duke.

I'll update after the surgery Tuesday. Keep Matthew in your prayers.

-- Eric

Saturday, December 27, 2003 10:38 AM CST

Hi everyone. Merry Christmas!

Sorry that it has taken so long to post a new journal. It's just a lot of work being back at home. We have to follow up on so much stuff that was taken for granted at Duke. It would be easier to be at Duke for the next couple years (if our insurance would pay for it -- ha-ha!).

First of all, Matthew is doing well. Results from his six-month studies show his enzyme level is at a normal level now! Yay! We have been dealing with some GVH, but Sue and Dr. Kurtzberg think it is mild. Dr. K wants to see us again at six weeks (January 13th) instead of the usual three months because of the GVH.

He may need a blood transfusion soon, since his hemoglobin level is a little low. His last transfusion was at Duke during the six-month checkup, and he has been on a roll of getting a transfusion every six weeks. It would be a lot easier to get the transfusion at Duke since they aren't really set up for that here.

Here are some of the events that have kept us busy since our last journal.

We left Durham as scheduled on November 8th, but we didn't get far. About two hours into our trip on Interstate 85, our Jeep started making funny noises. Luckily, we were about a mile from a rest area and pulled into it. Peggy's brother Bernard was behind us in his van, so he followed us into the rest area. There was something seriously wrong with the front wheel and we decided the Jeep was not safe to drive. It was too late and we were too far from another exit to find a rental.

We moved a bunch of stuff out of Bernard's van and into the Jeep so we could all fit into the van. Bernard drove, the kids got the three empty seats, Susan sat on the console between the back seats, and Peggy and I sat on the back floor of the van for the 3-hour ride home. We left the Jeep at the rest area with a lot of our possessions.

We were so off schedule that we had to stop at a McDonald's parking lot outside of Richmond to hook Matthew's IVs up that night. The next day Bernard and I drove back to retrieve our belongings from the Jeep, and had a repair shop in Petersburg, Virginia tow it that Monday. A week later we got our Jeep back. It was a lot of driving back and forth 3 hours each way. Thanks to Bernard and Susan for helping us out!

Then on November 21st was Peggy's nightmare come true. She was getting everyone ready for a doctor's visit and Matthew's central line pulled out. He still had one of his morning IVs running, and she laid him down to change his clothes. He has gotten so mobile that she turned away for a couple seconds and he was crawling away. I guess the weight of the pump was enough that as he moved away it just pulled his line out. She freaked out but Matthew was okay. Dr. Kurtzberg told us before we left that if it pulled out the vein would probably seal up right away.

We had surgery that afternoon to put a new line in and it went well. Matthew's doctor up here, Dr. Plotsky, was great in arranging the surgery with the hospital. The doctors at Shady Grove hospital were excellent and the nurses arranged to keep Matthew away from any other patients. At least the new line solves the problem we were having with the FK506 levels being wrong due to contamination of the central line.

Unfortunately, one of Peggy's friends from the apartment complex in Durham passed away before Thanksgiving. While Matthew was in the PBMT unit over the summer, Peggy met Elizabeth Rosenquist and her husband, Stan, one night when she took Victoria and Sean out for a walk after dinner. They brought dinner over to the apartment a few times and it was delicious. Elizabeth was being treated for lymphoma at Duke with the same treatment Matthew had -- a cord blood transplant.

Peggy's uncle also passed away before Thanksgiving. Father Ned and his whole Passionist Community at Daneo Hall in Chicago have been praying for Matthew. He was 86.

Thanksgiving was at Bill and Chris' house. It was a really fun time, and the food was delicious. Their new house is beautiful. It was a great time for everyone to see Matthew's progress. Unfortunately, at the last minute Matthew's cousin Katie could not come because of an infection and she was readmitted to Johns Hopkins.

We went back to Duke on November 30th for Matthew's six-month studies. It was a rough time. The drive to Durham took forever since we were on the road with everyone returning home from Thanksgiving. The hotel was supposed to have a refrigerator in our room for Matthew's meds when we arrived, but we had to use the minibar until we could get one the next day.

The worst part was that the hotel lost a package with Matthew's IVs. Since his FK506 is only stable for a couple days, the home health company had to overnight FK506 for the last day at Duke. It arrived at the hotel (we had a tracking number and signature), but someone at the hotel misplaced it. We never found out for sure what happened, but we had to go back into the clinic on Wednesday to get treatment for the missing medicine. The bright side was that when we complained to the hotel, they refunded the cost of the room for the three nights.

Peggy's mom is feeling much better now since her broken shoulder has healed. She spent most of her time recovering at Rose's house. She was glad to get back home so she could get ready for Christmas.

Cousin Katie is at home now and was able to be at the Christmas Eve fun. She is doing much better now. Please pray for her continued recovery.

It was great to be able to have the traditional Christmas Eve at Peggy's mom's house. Peggy has been waiting for this day when everyone is able to be together again. It has been a rough year.

Santa came with gifts for the kids. Victoria was afraid of Santa at first, but warmed up when she saw he had a gift for her.

We'll try to be better with the updates as we get into more of a routine. I'll try to post one after our January meeting at Duke unless something happens before then. Check out the newest pictures online.

Happy New Year,
Eric

Thursday, November 6, 2003 12:08 AM CST

T +167

Good Morning! It is Thursday morning and everyone is still asleep while I am typing this update.

Every week it seems as if we have had something to stress about. It has been platelets, red blood, rash, and last week we were told his CMV virus test came back positive. They took more of his blood last Friday to retest and we were on pins and needles all weekend. The results came in on Tuesday and he was negative. They repeated the test Tuesday and we got the results over the phone last night that it was again negative. CMV is a virus they can treat, so if it had been positive they would have put Matthew on a new IV medication and asked us to stay several more weeks so they could watch it.

I have not minded staying at Duke since Matthew is getting such wonderful care, but I am at the point that I know it is the right time to go home. Unfortunately, this last Monday we lost our cat Snyder. He gave me seventeen-plus years of great times. It was very hard for me not to be with him at the end. I have not been back home since I came here in April and that was the last time I saw him. We have ten other animals, most of which are older, and it would be great to be back before they go anywhere.

More importantly, I have not seen my mother in seven months and it is definitely time to see her. My mother's younger brother, Father Ned (age 86), is not doing well. Father Ned has been keeping Matthew in his prayers with the rest of his monastery in Chicago. We love you Father Ned.

We are scheduled to see Dr. Kurtzberg tomorrow. Matthew has another blood draw before our meeting with Dr. Kurtzberg. Hopefully all will go well and she will give us her blessing to go "home-home."

We have been busy packing and getting ready to drive back to Maryland on Saturday. Dr. Kurtzberg has been in touch with the doctor who will be seeing Matthew in Maryland. She is located about 15 minutes from our house, and has a new building with a back entrance that we will be able to take Matthew through to a private exam room. That way he will not be exposed to the waiting-room germs. She has taken care of three other patients for Dr. Kurtzberg.

Matthew will be going home on two IVs that run for two hours in the morning and two IVs that run for two hours in the evening. We also give him three oral meds in the morning and four in the evening. He is still getting steroids which are pushed into his central line over five minutes. The steroids are considered a low dose and they are giving the doctor in Maryland a weaning schedule for the next couple weeks.

The home health care in Maryland will be starting up on Monday. We will be sent home with enough medications for the weekend. A nurse will come over and train us on the new pumps for the IVs. Hopefully everything will go smoothly.

Matthew's six-month post-transplant date is November 19th, but Dr. Kurtzberg is scheduling his checkup for the first week of December. That will give us a little longer time to get settled back home.

My niece Katie has been discharged from Johns Hopkins after undergoing her bone marrow transplant. She has moved into an apartment near the hospital for her 100-day post-transplant stay.

I want to thank Mom and Dad Sackett for putting in seven long months helping us out by staying at our home and taking care of our animals. I know you guys are reaching the end of your rope and want to get back home. We cannot thank you enough for taking such good care of the rest of our family while we were away.

Another thank you to my brother Bill for being with Snyder at the end. It gave me peace of mind knowing you were with him so I could continue to take care of Matthew and not make any mistakes with his medications.

Thank you to sister-in-law Charlene for coming down last weekend and packing up her van, and for coming down again this weekend to pack up even more for the final move. Thank you to sister-in-law Susan and brother Bern also for coming and helping out with the final move back home.

Thanks to everyone for your continued thoughts and prayers. All the prayers along with the incredible talents here at Duke have gotten us to this point and we are so grateful.

We have some more photos from our time here, so check them out. We will add another album once we get settled back home.

Hopefully our next update will be from Maryland!

Wednesday, October 22, 2003 10:10 PM CDT

T +151 (Tuesday, October 21, 2003)

Hi everyone -- Peggy here. I'm finally able to give you an update. We are in clinic today for our long day. We arrived here at 9:15 am. Matthew had to have his blood taken directly out of his vein because of the contaminated central lines. They say the lines take several weeks to clear up.

Victoria and Matthew are here with me, and Sean and Dad just went home to get some work done. I am sure Sean is ready for a nap since he stayed busy at the hospital.

Matthew's red blood was low over the weekend and Monday it was only 7.9. They usually give a blood transfusion at anything less than 8.0. Well today it was 8.3 so they said he did not need it. They would prefer not to give him one so his body will work harder and make it on its own. The numbers on the platelets have been getting higher -- hopefully they are taking hold and we will not need to get them anymore. He has not had to have either blood or platelets in awhile.

His rash seems to be almost all gone. He just has a little on his feet but it has changed color and is peeling -- signs that it is stopping.

Unfortunately my mother took a fall this past Sunday and broke her left shoulder. She laid on the floor for about an hour calling out her neighbor's name until she was finally heard. An ambulance came and took her to Suburban hospital where she spent the night. She has not felt up to coming down to visit Matthew during our stay here. At a young 87 years, mom helped me take care of newborn Sean and Matthew when I moved in with her for three months after giving birth. She misses them and I cannot wait for the day she once again holds Matthew. Please say a prayer for her speedy recovery.

The other day we asked when they thought we could go home. They said 2 to 4 weeks. They thought before Thanksgiving. Well I asked today and I think they are planning for the first week of November.

T +152 (Wednesday, October 22, 2003)

It is now Wednesday morning. I thought I would have this done on Tuesday but we did not get home from clinic until after 9:00 last night. It was a very long day. I only had energy for feeding everyone and giving baths. Thank goodness everyone went to sleep around eleven.

We got to see Dr. Kurtzberg in clinic yesterday. I mentioned my mother to her. I let her know that if it was going to be awhile before we could go home, I wanted to take a couple days and take a trip with Matthew to see my mom. Dr. K thinks that we should be able to go in two weeks -- November 4th would be our last clinic visit here. As long as everything looks good with Matthew that will be the plan. We'll probably move back on the weekend of the 8th.

Dr. K said that we would probably see Dr. Plotsky at Shady Grove Hospital near where we live. Dr. K likes her and is familiar working with her. We would continue to receive certain medications, the ones we get here at clinic, at Shady Grove Hospital. They will start the process of getting everything lined up with all the home health people -- getting the IV meds and physical and speech therapy. We know things could change, so we are not getting too excited. We want only what is best for Matthew.

No medications were changed at clinic last night. They want to keep everything the same for the next week. Matthew's 6 month checkup will be coming up towards the end of November. They will probably make it for the first week in December, so we will have a couple weeks back home first. Every three months after that we will be coming to Duke for followup visits.

I have been taking Victoria and Sean out for some wonderful walks in the beautiful Sarah Duke gardens. We also went through a corn maze and pumpkin patch at a local farm. We have been enjoying this gorgeous fall weather. Matthew rides around in the car with Dad while I take the others out to release some energy.

Eric has been doing well. His blood levels are holding so they have been dropping his steroids. The next, and probably last, doctors appointment for him at Duke is November 3. They do not really know why it was happening but are happy that it has stopped.

Niece Katie has had her transplant at Johns Hopkins and everything went well. She is doing as well as can be expected -- not eating anything usually comes with the process.

A big thank you to my sister-in-law's parents, Dr. and Mrs. Lewandowski, for sending us a festive Halloween pumpkin decoration. The kids love all the changing lights. Originally we thought for sure we would be home for Halloween. The pumpkin brings a much needed fun spot for us all.

Another thanks to my sister Cathy for the cookies and pumpkin costumes. I don't think we'll be trick-or-treating, but check out the new photo album we just put online.

Thank you everyone for keeping Matthew, my Mom, Katie, and Eric in your thoughts and prayers.

Thursday, October 9, 2003 10:48 PM CDT

T +139

Check out the new September photo album online.

Hi everyone. Eric here again.

It has been very busy since Sean arrived, but it is not all due to him. Peggy has been taking care of a rash that Matthew has developed. Here is what she was able to write so far.

Peggy: Two Fridays ago I pointed out a rash that Matthew had in his diaper area. I was told to use a certain cream. By that Sunday the rash was in the diaper area, neck and his back. I took him into clinic on Sunday and they gave me a new cream for the diaper area saying it was probably yeast. The rash on his back was possibly GVH (graft vs. host), so again another cream. By last Tuesday, our regular clinic day, Dr. Kurtzberg told me not to worry since it was very mild. She changed what I had been doing to GVH cream all over his body and a new oral med once a day for yeast. When I took him in for his visit on Friday his rash had gotten worse. They decided to give him a large dose of steroids and again another cream for yeast and still use the GVH cream all over his body. The doctor said by Sunday I should see the GVH going away. I took him in this past Sunday since I was worried it had not changed much. It actually looked like it was clearing up in some areas but starting in others.

Eric: Well this Wednesday we finally determined that his GVH rash is probably being caused by a too-low dose of FK506. The FK506 level of labs drawn from his central lines showed a very high level of FK506, but when they drew blood from his arm the level came back too low. Somehow his lines became contaminated with FK506, and the blood drawn through them is giving a false result. So the doctors increased his FK506 IV and hopefully this will control his GVH rash. Peggy is still applying rash cream 4 times a day.

Otherwise, Matthew is doing fine and progressing with his recovery. He enjoys seeing Sean again. Victoria is very happy to have Sean to play with. Sean is adjusting to being back with Mom and Dad again. It took a couple days for him to realize who we are.

Peggy wishes she had more time to write, but until Matthew's rash has cleared-up, she is keeping very busy. Thanks for the prayers and understanding.

Please keep Matthew's cousin Katie, Peggy's sister's daughter, in your prayers. She has been fighting Leukemia for the last couple years, and undergoes a bone marrow transplant at Johns Hopkins in Baltimore on Friday (October 10th). Her sister Emily is the donor -- she was a perfect match.

Also, please remember Baby Noah's family in your prayers. They lost their year-long fight to save their son this week (www.caringbridge.org/hi/noah/).

Thursday, September 25, 2003 9:06 PM CDT

T +125

Hi everyone. Eric here. Just wanted to post a short note that everything is going fine. Hopefully Peggy will find some time to fill in some of the details later.

Matthew had one of his central lines removed today. It is one more step toward coming back to Maryland. He will keep the double line which we will use at home. He was tired and cranky after the surgery, but he is doing great.

We are waiting for Matthew's platelets to start holding their own. It looks like they are doing better, but it will still take a little more time to know for sure.

We've decided to bring Sean down to stay with us in Durham. Peggy's sister Rose and her family were all set to have Sean stay with them and be in daycare during the week, but based on Dr. Kurtzberg's recommendation, we've decided not to risk exposing Matthew to anything through Sean. The other option is to not be together as a family with Sean for a long time. I don't know if that is such a great option.

I'm doing fine. All my tests look good, and the doctor is weaning the steroids to see what happens. I think the steroids are affecting me more than anything.

Thanks again to everyone for their thoughts and prayers!

Tuesday, September 16, 2003 10:52 PM CDT

T +116

Hi Everyone.

I had planned on updating the journal last week, but last Tuesday, clinic day, ended up being a little difficult. Matthew threw up after eating his lunch at clinic. I just thought I had fed him to much. Then we got home and he ate a wonderful dinner only to later throw it all up. He wanted his Pediasure later that night, but again it all came up. Of course I was a nervous wreck. He slept well that night, but first thing in the morning he continued to want to throw up but had nothing in him.

After doing his morning medications I gave him breakfast and he kept it down. I waited to hear from the hospital on his blood so I could tell them about Matthew. They discussed a plan of action and decided to increase his steroids. They have been weaning his steroids and we were almost done with them, but I think Matthew was not ready for that. After receiving a large dose of steroids on Wednesday evening he began feeling better and keeping his food down.

They saw him on Thursday to make sure he was doing okay. He needed platelets and blood. So no one knows for sure why he had been getting sick. It could have been the steroids or low blood, and they even mentioned a little GVH of the stomach (Graph vs. Host). I do not think any parent wants to hear those dreaded letters GVH. Whatever the reason something worked and he did very good all weekend.

This past weekend was full of unwanted events. Eric had gone home for a week to start getting the house ready. Things were going fine until Saturday night. At 11:00 pm we had a knock at the front door. I looked out the peep hole and did not recognize the man standing at the door. He started talking and trying to get in the door. He was pounding on the door. I called Edwina (Brent's mom) downstairs because I didn't know what to do. I just hoped he was drunk and would go away. Edwina said to call 911, so I did. He left just as four police cars arrived. Unfortunately, this apartment complex has had a couple apartment and car break-ins lately. I never found out for sure what happened, but we spent the night at Edwina's. I was restless all night, which didn't help come Sunday morning.

After I gave Matthew his morning medications, and he was still running his IVs, I had to take labs to the clinic. So I loaded the car, started it and put Matthew in his car seat. I guess I just hit the door lock out of habit, but then I shut the door. I had just locked Matthew inside. Unfortunately, Victoria wasn't inside yet to open the door. I had to call 911 again to try and get help. Luckily, Tony, an acquaintance in our building, works for the apartment complex, and he was able to get a key to get me in my apartment. I had to call Eric in Maryland to see if there was a spare key. Thank goodness he brought one down a couple months ago and I was able to get into the car. Brent and Amanda rode with me to the clinic to be sure I didn't lock anyone in the car again. What a weekend!

Today is again clinic day. They decided not to change any of his medications yet. Maybe on Friday. I saw Dr. Kurtzberg, and she wants to get his platelets and other blood levels growing on their own before we go home. So they are going to let his levels go lower before they give him treatment. They hope this will spur his body into growing the platelets and blood instead of getting transfusions.

So that means we will be here a bit longer than we thought last week. Dr. K said mid-October before we go home. That's okay with me. I really want to be sure Matthew is under control before we go home and have to start a new situation with new doctors. Dr. K also mentioned that she doesn't think Matthew's throwing up last week was related to GVH. Thank goodness.

Matthew will be having surgery next week to remove one of his central lines. That is a step forward and will be one less dressing change.

We have new photos online, so check them out. Tori and Matthew received a great gift package from Rory and Chris. Tori really enjoys listening and dancing to the CDs. For Matthew's T 100 day, cousins Brian and Laura Connolly sent us a bunch of balloons. We also celebrated Brent's 13th birthday on Friday, September 5th.

Matthew has the spotlight at www.pitcrewsforkids.org when they sent us a big supply of Cheetos.

Everyone has been asking about Eric, and he is doing well. The doctors say it was an auto-immune response that was destroying his red blood cells. The steroids have stopped it, and his blood levels are almost back to normal. They have started weaning him off the steroids to see how he reacts. The steroids have some side effects, but Eric is feeling pretty good overall.

Tuesday, September 2, 2003 11:36 PM CDT

T +102

This past Sunday, August 31st, marked the big 100 days after transplant. We cannot believe we are at this point and Matthew is doing so well. We have so much to be grateful for -- and we are. We received an email at home yesterday from Dr. Kurtzberg's assistant -- Matthew is 100 percent donor cells. That made our day. He was 99 percent donor cells when he was tested on the unit.

As I write today's update we are in clinic and both Matthew and Victoria are taking a nap. It took Matthew forever to finally fall asleep. We have had a busy day. This morning Matthew had an echocardiogram (heart study) and his pulmonary functions (breathing test). When we arrived to do the echo they were going to sedate him, but luckily while they were getting ready he fell asleep in my arms. I laid him in the bed and they did everything they needed and he slept right through it. He cried through the pulmonary test because they had to put a mask over his face and get him to give a strong/mad breath. It was over quickly and he was fine.

Today in clinic we talked about going home-home. I cannot believe it. They are starting to write the going-home letter to the doctor we will be seeing in Maryland. There is a doctor at Shady Grove hospital, near our home, who has taken care of two other transplant patients from here, and they feel comfortable working with her. It could also be Children's Hospital or Johns Hopkins -- wherever they feel would be the best for Matthew.

Dr. Kurtzberg would like us to be here four more weeks. That will give Matthew time to be weaned from more of his medications. We had always thought if everything was going well, it would be middle to the end of September.

I have such mixed emotions about going home. It is very scary leaving the security of Duke and all the wonderful people here. If they feel he is doing well enough, then that is what I will try and concentrate on. I am sure once I feel comfortable with the people in Maryland, then I will feel better about leaving here.

Matthew will be going home on more medicines than I had expected. He will also keep one of his central lines in. I might have to continue to give him his IV meds at home. He will still need his blood tested regularly and will have to receive platelets and blood until he his doing it on his own.

They mentioned to me that they have had to "medivac" children back to Duke. As long as the child is stable they will get him back here. Hopefully we will never have to do that. We are only a five hour drive from here -- some children come from across the country and out of the United States.

Today in clinic they reduced the steroids to one ml once a day (half his previous dose). Another IV that runs for one hour mornings and evenings was cut back to only mornings. They may cut back more this Friday when I take him to clinic -- they want to see how the next couple days go.

The results from today's echo showed thickening of the heart walls. He had some of this before transplant. They also explained that some is caused by the drugs he is taking. Some of it will go away once he is off the medications. The results from the pulmonary test earlier today was fine.

I have no new news to report on Eric. He had to go to his clinic today for them to test his blood. They will check it to be sure his numbers are high enough. Next Monday he will meet with the doctor again to see if they know any more. Overall he is feeling good since his transfusion last week.

We have more thank you's this week.

First, we want to thank my very thoughtful cousins the Connolly family (Barbara and Jim, Bill and Lois, Mary and Mike, Debbie and Gary, Peggy and Tom, Cheryl, Tom and Jean, Brian and Laura) from North Canton, Ohio, for sending Matthew a very generous gift. It is very nice of you guys to do that, and it will be put to good use taking care of Matthew.

Second, we received a box in the mail full of more Cheetos. We do not know whom to thank for them since there was no identification, only that they were from Florida. Thank you mystery person.

Third, thank you brother Bern, brother-in-law David, and father-in-law for all your hard work insulating and installing the air conditioning and heating in the "Dog Majal." The dogs are going to love it out back in their new home -- I hope.

Fourth, thank you to the Ruddick family (Rose, Al, Colleen, and Margaret) for taking care of Sean for the last two months and for getting him up to Hagerstown.

Finally, thank you Team Dennis (Ann, Pat, Evan, Mara, and Liza) for taking Sean on for the next two weeks. He will be one spoiled little guy when we get him back.

I have these next two weeks to find a mother's helper down here. When I get Sean back they can help take care of Victoria and Sean in clinic and around the apartment. I may only need to find someone for two weeks if we really are coming home at the end of September.

Eric and I are also interested in finding a mother's helper/nanny to help us out in Maryland. If anyone has any good leads please let us know.

Thank you everyone for your continued support and prayers.

Wednesday, August 27, 2003 7:02 PM CDT

T +95 (August 26th)

Hi everyone!

I am writing while I sit in clinic. Matthew is taking a nap. Victoria is also asleep at the bottom of the bed wrapped in her blanket. Eric is over at the adult clinic getting a blood transfusion.

Since it is Matthew's web site I will fill you in on him first. I thought Matthew would be getting blood today but his numbers went up since yesterday. We will probably have to come in for blood tomorrow, since they took a lot of blood today for several 100-day tests.

Matthew stopped taking TPN (his liquid nutrition) this past weekend. He has been eating very well. Since TPN has stopped he has been drinking more. Hopefully he will continue to eat and drink and not have to go back on the TPN. I am always nervous when we weigh him in -- I do not want him losing weight.

Matthew used to get platelets every four days. That has increased to every seven days. We are waiting for them to take hold so he will not need them at all. He needs to get blood about every three weeks. Again we are waiting on that. The white cells come in first, then the red, then the platelets.

We have started to see doctors we saw before transplant when they established a baseline for Matthew. They will see how far he has come. Today he saw Dr. Escolar who checks his hearing and developmental issues. She was the doctor before transplant who mentioned that she was not sure if Matthew had brain damage or was slow with development. After seeing him today she feels he has come a long way.

Having the brain shunt and the transplant enabled him to see better, which have all added to him being able to develop further. We will get a full report from her findings in about four weeks. Wednesday he will have a CT of the brain. Next Tuesday he will have an echocardiogram (heart study). Soon he will have a eye exam (and maybe get glasses).

Overall, Matthew acts as if he is feeling great. He has so much energy and keeps on the move all day with very short naps if any. At night he has a very good nights sleep (usually going to sleep at 10:00 pm and getting up at 8:00 am).

We are still running two IVs at night and two IVs in the morning (one runs one hour, the other two hours). His steroid dose has been decreased each week and today they dropped it to one ml twice a day. He is taking three oral medicines and two pills that are crushed up in his food.

Last week Eric met with the hematologist here at Duke. They took a lot of his blood and ran different tests. He met with them again yesterday and they are still not sure what is happening. They had one test come back that was not completely negative which had to do with his auto-immune system. At this point they believe his immune system is attacking his red blood cells. They have increased his steroids. He is getting transfused today. Next week they will check his blood again and the following week meet with the doctors again to see if they know any further information. They are still waiting for the CT scan to be sent here from Maryland. Before ruling anything out they want to review the scan, but believe any cancer or tumor would have been seen by the doctor in Maryland.


T +96

Hi again everyone. I am again in clinic today with both Matthew and Victoria asleep. I will continue to fill you in on everything. Last night we left clinic around 7:30 pm. We did not get a chance to see Dr. Kurtzberg, since she was so busy, but another doctor instead, Dr. P. Everything seems to be going fine. The only thing they changed was reducing his steroids, as I mentioned yesterday. Our 100 days will be this coming Sunday, so next Tuesday they may remove more medications -- they usually wait for the 100-day mark as long as everything is stable.

Matthew has been throwing up the last two days and the only thing different is a magnesium supplement they have put him on. Today they have decided that I will give magnesium to him through IV so we can stop the throwing-up and make sure that it is the magnesium. Since he was taken off of the TPN they tend to loose magnesium because of the other drugs he is on.

Matthew is receiving a blood transfusion and a dose of magnesium through IV today. Earlier this morning he received a CT scan of the brain. They did not have to knock him out. He cried when they strapped him in. It only took about ten minutes then I could hold him and he was fine.

The transfusion seemed to make Eric feel better but I think the whole idea of not knowing what is going on is weighing heavy on his mind. Hopefully next time he sees the doctor they will know more.

We have a couple of thank-you's to announce.

First, thank you to Rory and Chris for coming down and checking in on us. Thanks for treating us to both a wonderful dinner and bringing breakfast on Sunday morning. Victoria loved playing with both of you. We are so glad you were able to see how well Matthew is doing and hopefully soon you will be able to visit him in Maryland.

Second, a big thank you to "Hendrick Marrow Program -- Pit Crews for Kids" here in Charlotte, North Carolina. They sent Matthew a package full of bags of Cheetos. They read earlier on the web site of my Cheeto dilemma when Eric was out of town, and wanted us to have a big supply. That was very thoughtful and we appreciate it very much. Matthew loves them.

Here are some new photos.

Wednesday, August 13, 2003 10:07 PM CDT

T +82

Once again I apologize for taking so long to update Matthew's page. It has been a crazy couple of weeks.

Matthew's hernia surgery went well (almost two weeks ago). The doctor said Matthew had a very large hernia, and he did the best job he could. He mentioned that it's possible the hernia could come back -- possibly within a year's time. If it does, at least Matthew will be stronger and the transplant will be over.

About a week after the surgery I was still concerned about the size of Matthew's scrotum. The doctor who did the surgery said to expect it to be large for the next four to six weeks due to swelling. He will continue to check on Matthew in clinic.

Over the past couple weeks we have had some wonderful company come and visit us here in North Carolina.

First I want to thank Sandra and Bob for driving down from Virginia to have dinner at the apartment with us. It was wonderful to see you guys. Sandra, thanks for helping me figure out a way to get Matthew to drink since he still does not take a bottle. He has been doing really well with pouring it into his mouth. We look forward to getting together when we head back home -- someday.

Then we had a fun-filled weekend with Uncle Bill, Uncle Christopher, Uncle Pat, Aunt Ann and cousins Evan, Mara, and Liza. Victoria misses you guys so much and keeps waiting for you to walk into the apartment. They all got to experience what Eric and I are going through down here and can tell you it takes up a lot of time -- we always seem to have dinner very late. Thanks for all the thoughtful gifts.

I have another thank you that goes to my cousin Brian Connolly and his wonderful wife Laura and their children Elizabeth, Madeline, Robert, Abigail and James. Their children are doing a pen pal with Victoria -- she loves to get mail. They also sent Matthew a fantastic Little Tikes car. We put him in and push him around the apartment.

Thank you Father Ned for signing Matthew's web site and for sending all the prayers. What more could Matthew ask for than to have all the priests in your community at Daneo Hall praying for him. We miss and love you very much.

One last belated thank you to everyone who has been sending letters, cards, e-mails, mass cards, and prayer cards. We greatly appreciate all of them. And a belated thank you to Kirk for sending the fabulous Harry and David package.

Eric went back to Washington last week on business and he found himself getting dizzy. His parents told him he looked very white and took him to the emergency room. He was anemic for some reason. The hospital admitted him and he got a blood transfusion. They did a CAT scan and checked his bone marrow. They said his bone marrow checked out negative for cancer. He is making red blood cells but for some reason his body is killing them. They still do not know what is wrong, but released him on Sunday. He drove back to NC on Monday. Since we moved our business here, he could not work from home too easily.

When we took Matthew to clinic yesterday, Eric was also seen in clinic. Dr. Kurtzberg arranged for Eric to have his blood drawn and the results sent up to his hematologist in Maryland. She will also be arranging for him to be seen by a hematologist here at Duke. The doctor in Maryland welcomes a second opinion since a cause isn't apparent. Dr. Kurtzberg mentioned to us last night that some of her children who have gone through transplant have the same problem.

We did not finish clinic last night till 9:00 pm. Dr. Kurtzberg had 42 patients to be seen yesterday. We are very grateful that they managed to fit Eric's situation in yesterday on a very busy day for everyone.

Eric's hemoglobin number seemed low last night when we got the results. Today they will be talking to the doctor in Maryland to compare notes and see what are next step for Eric will be. Overall Eric seems to be feeling good but can get tired easily. I am having him only concentrate on the business and seeing his doctors. I will handle Matthew, Victoria and everything else.

Thank you Rose, Al, Colleen and Margaret for having Sean at the Ruddick Ranch. I cannot even imagine having that little terror running around down here. I miss him terribly but do not think I could handle him with Eric's situation right now.

When Eric was gone for several days it caught me off guard for Matthew's Cheetos supply. Since I cannot take Matthew out to the grocery story I needed to find someone to get some. I knocked on some neighbor's doors but found no one at home. Luckily Eric thought of a good idea while he was laying in the hospital. He called Russell a freelancer that we have been using down here. Russell used to work with us in Washington and lucky for us happened to move to this area. We have been keeping him busy since we first arrived at Duke. Russell showed up Friday night with Matthew's Cheetos and I was able to hand off some design work to him. Thanks Russell.

Last week started Matthew's at-home visits with his physical therapist and speech therapist. Everything seems to be going really well with that. I cannot even imagine Matthew ever walking, but I remember the time I never thought Matthew would be sitting by himself. The biggest thing I want from the speech therapist is to get Matthew drinking more so we can get him off TPN. They have cut his TPN in half since we have been out of the hospital, but last night they mentioned he needed to do at least 20 ounces a day of fluids. He is only at nine to ten ounces of Pediasure plus 2 jars of baby food (and of course lots of Cheetos).

Thanks everyone for being so patient with my slow updates and still keeping an interest in Matthew's progress. I always have such good intentions to write something, but then collapse at the end of the day because I am so tired. Now I will have to keep you posted on both Matthew and Eric.

Check out the new photos we just posted.

Tuesday, July 29, 2003 10:57 PM CDT

T +67
WBC 35.6 (very high)

Hi everyone! As I write this note both Matthew and Victoria are asleep in bed at clinic.

This is our long day at the hospital, and it is wonderful when both of them take a nap. The nurse will come in to take Matthew's blood pressure and temperature while he is receiving his meds. He'll wake up and I hold him until he falls back to sleep.

Matthew has been doing very well. He seems to be feeling great. He does not like to be ignored and wants attention all the time. The only time I get for myself is when he is sleeping or eating a Cheeto. I am not complaining -- I love giving him attention. We play games like peek-a-boo. He loves to imitate sounds that you make. If I cough he will cough back or make other noises that I do. He laughs all the time watching Victoria play and dance.

I asked Tori if she wanted to get her hair cut and she asked "like Matthew's?" Tori seems to be adjusting very well to everything. When we first came home from the hospital she could tell all our attention was with Matthew and she was very jealous. As time goes on, she has gotten used to all Matthew's medications and loves to help wherever she can. When the alarm goes off on the pumps she always runs over to see which one is beeping and turns it off. Every morning when Matthew goes down for a nap I take her to the pool. She has met a lot of girlfriends and loves playing with them. She is always worn out when we get home and takes a nap while I make dinner.

On Monday of this week, yesterday, we met with the nurse who reviewed everything for his surgery this Thursday. Of course I never like having to send him into surgery and will be a very nervous mother come Thursday morning. He has done wonderful on his past three surgeries (tonsils, brain shunt and central lines). I just look forward to the moment the doctor comes out and tells me everything went great and he is in the recovery room. I will also be very happy to have his poor scrotum look normal. Ever since birth he has had a hydroseal. The doctors also seem to think the hernia has been since birth. The extra fluid that is emptying into the scrotum from his brain shunt makes it huge at times. He will feel like a new man.

We are going to have some family visit this week. Aunt Ann, Uncle Pat and cousins Evan, Mara, and Liza come in on Thursday. Hopefully everything will have gone smoothly with Matthew and he will be up for a visit. We believe it will be an outpatient procedure for Matthew, and he will get to go home Thursday. The only concern is his platelets.

Matthew's Uncle Bill and Uncle Christopher will be coming in on Saturday. We will have a fun-filled weekend. Cousin Mara's birthday is on Saturday so we are planning a little party/cookout at the pool -- Victoria cannot wait.

Matthew received medication and platelets today from 2:00 to 6:00. Then we waited to see Dr. Kurtzberg. She was very busy today -- we saw her at 7:30. She said everything looked very good with Matthew. They will begin to wean his TPN (liquid food) on Friday, the day after surgery. They continued to drop his steroids down -- they have been doing that each Tuesday. They stopped his GCSF (stimulates the formation of white blood cells) completely and have decreased his FK506 (med used to reduce immune responses and prevent rejection in patients who receive organ or bone marrow transplants). They have also stopped one of his oral mouth medications since his yeast infection has cleared up.

Matthew has been eating well. He still has not been sucking from a bottle but is drinking from a cup. The only way we can get him off of TPN is to get him to eat more. Hopefully with them cutting back on TPN he will be hungry for more to eat and drink.

He is not throwing up anymore. That was a daily ritual and I think it was because of one of the oral blood pressure meds he had to take. He never had a problem with it in the hospital, and the new stuff we got he hated. The pharmacy in the hospital mixed up a batch for us following the recipe on the 5200 Unit and Matthew is fine with it. Even Dr. Kurtzberg said she learned something new from that.

Please keep Matthew in your prayers on Thursday as he undergoes another surgery. I will let everyone know how it goes.

Thank You.

Thursday, July 24, 2003 11:15 PM CDT

T +62

Hi everyone. This is Eric writing today. I decided to write something quick since it has been so long since the last update, and I'm sure everyone is concerned. Our days are so full with giving medications and just taking care of things that it has been difficult to keep up on the journal.

Matthew is doing great. We got great news this week that the doctors cut back on Matthew's clinic visits. He only has one scheduled clinic visit a week, on Tuesday. He will still probably need to go in on Fridays for platelets, but they will let us know. They are lowering the doses on some of his medications to help spur his platelet growth.

Matthew has what looks like a yeast infection in his mouth. This may be part of the reason that he has been getting sick and vomiting at night and after eating. So we have two additional medications(!) to give him to help clean the infection up.

Matthew is having surgery on July 31st to fix his hernia. He has a lot of fluid in his scrotum and the tubing from his shunt has migrated down into it as well. The doctors aren't overly concerned about the surgery, but they need to keep his platelet count up and give him a lot of antibiotics.

Peggy started writing a journal entry last week, but never had the time to finish it. So I'm adding it today.


Tuesday, July 15th
T +53

Today is Matthew's long day in clinic. We arrived at the waiting room around 11:30 and waited two hours before going back to the private room for him to get his meds. He has a new favorite food -- Cheetos. He enjoyed several Cheetos while waiting. I noticed a lot of the children around here eating them, so I decided to try it. It is the only finger food he grabs and starts eating by himself. Dr. Kurtzberg mentioned that the children really like salty foods after chemo.

Once we got in our private room he ate about three ounces of baby food and then passed out on his bed. That gave mom a break so I could type this update for everyone.

Matthew had to come in yesterday (Monday, our day off) because he needed platelets.

I have had an opportunity to go to the pool in the morning for the last two days with Victoria. It gives her a chance to play and get worn out and gives me a chance to finally get back to some exercise -- swimming laps.

This will be our final week to have family staying and helping out. Aunt Rose goes back home on Saturday. She has been spoiling us rotten with her wonderful cooking. We will miss her. Eric and I feel we have a handle on everything and think we will manage with only two children, Victoria and Matthew. Sean will stay at Aunt Rose's house a little longer until we think we can work him back in.

Matthew is doing very good. He eats a little more each day. He naps and goes to bed around 10:00 and sleeps all night. It is such a change from the hospital hours we were keeping. We decided to drop his crib bed down because he is starting to get on his knees and pull himself up. It is wonderful to see him hold himself up.

Saturday, July 12, 2003 10:21 PM CDT

T +50

Today's WBC 9.1

Apologies for not updating everyone until today. We have been overwhelmed with the nursing crash course we got this past week. Check out the new photos and a movie of Matthew's laugh.

Today is the halfway point of 100 days post-transplant -- the minimum stay here at Duke for this treatment. Not all families get to go back home on 100 days -- quite a few have to stay on several more weeks or longer. We will have to see how well Matthew is doing when we get to that point.

On Monday, discharge day, Unit 5200 was crazy. Because of the unit's renovations, everyone was involved in moving the patients up to the 9th floor. We were ready to go at 9:00 am but had to wait until about 10:00 when they were able to get to us with the final paperwork. We had a confetti party with whomever was left on the floor. Big sister Victoria and Aunt Rose joined in on the fun going away party.

Matthew enjoyed his ride back to the apartment in the car -- he was all smiles. Once we got home Matthew played in his new crib and loved all the new scenery.

We did not get much time at our apartment before Duke Community Infusion Services joined us. We had no idea what we were getting into. One nurse showed up and made a roadmap of the medications. It was quite overwhelming at first.

On Tuesday the nurse showed up at 8:00 to help us with our new morning routine, then it was off to clinic. We waited from 11:00 am until 2:00 pm before they called us in. Matthew had 5 hours of IVs to be done. Luckily, Dr. Kurtzberg told us that we only have to go to clinic 3 days a week (unless he needs something special). Most patients have to go to clinic every day at first.

Every morning we draw his blood and drop it off at lab. They call us if he needs to come in for something extra, like platelets.

Matthew has one IV that runs all night (12 hrs), which is his liquid food (TPN), and 3 other IV meds that run 1 to 2 hours each morning and evening. We also have other medications that have to be pushed by syringe into his central lines over 5 minutes. Some medications have to be refrigerated, others stay at room temperature. In between the different medications we have to flush with saline, heparin, or dextrose. Eric and I have it down pretty good now. We set up the dining room table with all the different medications for each line. Eric mixes medications and gets the pumps ready while I change caps and start giving Matthew the IVs.

Some of the medications Matthew is currently getting are Foscarnet (an antiviral agent), GCSF or Neupogen (stimulates the formation of white blood cells), Furosemide or Lasix (a diuretic), Ranitidine or Zantac (blocks the release of stomach acid), Enalaprilat (an antihypertensive blood pressure lowering agent), Tacrolimus or FK506 (a medication used to decrease the immune system response), and Solumedrol (a steroid Graft vs. Host disease preventative).

Orally he receives Amlodipine for lowering blood pressure. For food he gets Total Parenteral Nutrition (TPN) and Lipids (Fat Emulsions). We also have mouth care we have to do 4 times a day.

Every Tuesday, Thursday, and Saturday Matthew goes to clinic and receives additional medications. Amphotercin anti-fungus med, Daclizumab GVHD preventative therapy, and IVIG antibodies to help prevent infection. Once a month in clinic he receives Pentamidime PCP prophylaxis.

Now you can see why it has taken so long to get this journal updated. Everything seems to be going fine with Matthew. His WBC is still rising and he acts like himself too, smiling a lot.

Thursday, July 3, 2003 5:59 PM CDT

T +41

Matthew's WBC is 1.6 today.

Everything is still moving forward with Monday's discharge. I am getting more comfortable each day with everything I have to do. Drawing the blood was easier than I expected. I am ready for this next phase of the transplant. I have heard a lot of not-so-good stories about having to wait in clinic, but I am grateful to be at this point.

Nurse Ann, Dr. Martin's assistant, just came in the room bearing very good news. The FISH report is back and Matthew's opposite sex cell transplant diagnosis is 99% female (donor) and 1% male (recipient). They said that is very good. In cancer patients they like to see 100% so the bad cells do not come back. In a metabolic disorder like Matthew's it is not a problem. They also said getting 100% is rare.

Matthew and I took a long walk today on our pass. We walked over to clinic and saw Nolan, a buddy of Matthew's who also had a transplant for Hurlers.

There were two confetti parties on the hallway today. It is beginning to get very empty here. Rooms are emptying and there are no new patients on this floor before the move. They have started to move everything upstairs. All the toy cars that Matthew liked to ride in are gone. We found a wagon and the nurse hid it for me so I will have it for Matthew this weekend.

Eric will be heading back to Maryland on Saturday to take Sean to Uncle Al and cousins Colleen and Margaret. Thank you very much for helping us out.

Victoria is very sad that Sean has to leave because of his vaccinations. She is very happy that Matthew is coming home. She does not understand why her family has such a hard time staying together. My sister Rose has told me that Victoria is listening and understanding all the adult conversations and just starts to cry. I am so glad she is able to stay with Matthew. We will all be reunited soon.

Wednesday, July 2, 2003 5:10 PM CDT

T +40

Matthew's WBC was 1.5 today. His ANC was 1170. So he has engrafted! The engraftment date was actually Monday 6/30 not Sunday.

The doctors are still talking about having us leave on Monday. It has been a busy day-and-a-half learning as much as we can. I had to get up at 2:00 am and watch the nurse draw his blood. Tonight I will do the same but I will have to do everything. I have had to change his caps and flush his lines. I think I have that down pretty good. As long as I go slow I can remember all the steps and stay sterile.

We received some very good news today. Our neighbor baby Noah will be going back to the apartment tomorrow. His family has been here since February and he just recently came out of intensive care.

Eric and I just finished taking Matthew for a short walk off the floor. He is doing pretty good with his mask and hat.

We also found out today that we have to find someplace for our twin Sean to go. He cannot stay in the apartment since he had vaccinations last week and some were live viruses. Matthew cannot be around him for 30 days. We did not think Matthew would be released this early. Just another something for us to deal with.

I received this quote from my sister-in-law. It is very appropriate for all we are going through.

"I know God won't give me anything I can't handle. I just wish He didn't trust me so much." -- Mother Teresa

Thanks Ann for the quote.

Please continue to keep Matthew in your prayers.

Tuesday, July 1, 2003 5:30 PM CDT

T 39

The nurse came in the room this morning with some good news -- WBC 1.2. YEAH! The doctors use something called an ANC count that they calculate based on the WBC and other blood chemistry, and if Matthew's is over 500 three consecutive days they consider him engrafted. He was over 600 both today and yesterday. If tomorrow he is over 500 then that means he engrafted on Sunday June 29th -- T 37.

Today on rounds I got a very big scare. Dr. Martin said that he is probably going to discharge Matthew on Monday July 7th. If all is well he does not see why we need to go through the move to the 9th floor. I was planning on two more weeks in the hospital. We have so much to do. Not only learn everything from the nurses -- dressing changes, draw blood, etc. -- but also get the apartment ready. We need to to buy a crib, get an air filter system for the apt, clean carpets, and do whatever else they say we need to do.

All the medicines they give by IV are being cut so you can tell they are getting him ready for home. Most medicines will be given by mouth when at home. At least I have that down since I'm giving him all his oral medications now.

They want to give us a 4 hour pass for Wednesday so we can take Matthew off the floor. I am not sure I will use it unless Eric is available to be with us. It is hard keeping his mask on and I will not have a car to take him anywhere. I can just pull him around in a wagon but I would need to stay away from people.

It is a wonderful feeling thinking Matthew is well enough to go back to the apartment but very scary too. I will begin spending days in clinic with Matthew while Aunt Rose watches the kids and Eric works.

An at home nurse just left our room saying she will be back to start training us either Wed. or Thursday.

Monday, June 30, 2003 5:07 PM CDT

T 38

My nurse came in at 4:00 am and said she got a preliminary number from the lab, and Matthew's WBC was 1.0. My first reaction was that it jumped too high, too fast, not slow and steady like everyone keeps saying. Anyway she got the final report in and it was 0.9. I actually felt better with 0.9. Not that I understand any of this, I just go off of what the doctors say.

Matthew had a rough night last night. It may have had something to do with him growing all those cells. They also took him off the continuous morphine yesterday. We still have the button to push, which I did throughout the night and today. The nurse and I did a dressing change last night before bed. He was already in a bad mood and then we had to mess with him which seemed like forever. We could not get the dressing off his central lines. You are not suppose to use scissors near the central lines, but the nurse had to, very carefully.

Dr. Martin was back on rounds today. He was very pleased with Matthews 0.9. He mentioned that Matthew looked pink with rash and that was a good sign that the cells he is growing are the female donors. They will do a test for it when he has more cells. Dr. Kurtzberg mentioned before that she thought they would be the donor cells, because of Matthew's major reaction several weeks ago with the rash and high temperature.

I am heading back to the apartment now and letting dad take Matthew for a walk in the hallway while he is unhooked from his IV.

Check out the new photo album: http://homepage.mac.com/dennisandsackett/Duke/.

Sunday, June 29, 2003 4:47 PM CDT

T +37

Dr. Kurtzberg was certainly correct in her prediction of Matthew having cells in the next 5 to 10 days. We have started to see them come in over this past week. Today being the 10th day of her prediction, I am happy to report that Matthew WBC is up to 0.5.

During rounds today everything went fine. They were very happy to see the numbers going up.

My sister Rose and I had a wonderful dinner last night with my cousin Dennis who lives in Raleigh. Dennis, thanks for taking the time to come over and visit and catch up on the past and the present -- it is great to see family and friends.

I wanted to take a minute and thank everyone who has been signing Matthew's web site or just checking in on him. It means a lot to know Matthew has so much support out there.

Look for new photos in Matthew's online photo album: http://homepage.mac.com/dennisandsackett/Duke/.

Saturday, June 28, 2003 5:29 PM CDT

T 36

After spending last night at the apartment, I arrived at the hospital to hear the nurses telling me that Matthew is growing cells. His count is up to 0.4. That made mom and dad very happy.

Matthew had his Aunt Rose, Uncle Al, and cousin Margaret visit with him today. Uncle Al and cousins Margaret and Colleen are heading back to Maryland today. Thank you for letting us have your mom for three weeks. With Aunt Rose here, Matthew will have his own private physical therapist.

On rounds today they said everything was fine. The doctor was very happy to see 0.4 since last weekend, when he tried to console mom saying the cells would come.

Matthew was unhooked from the IV for awhile today, so we did four laps in the hallway in his favorite toy car.

Keep the prayers coming -- it looks like they are working. Thank you.

Friday, June 27, 2003 4:53 PM CDT

T +35

Matthew's nurse woke me last night -- the cells were back up to 0.3. Needless to say, I was very happy.

We had another confetti party today. Jack, Matthew's buddy two doors down, got to go back to his apartment today. Jack is a couple months older than Matthew, and he also has Hurlers. I've mentioned him before in the journal. Jack's transplant was one week after Matthew's and his cells came in quickly. Congratulations Jack and parents Gina and David. We will hopefully see you in clinic in a couple weeks.

During rounds today everything went fine. Dr. Kurtzberg again said that the cells will continue to go up and down, but they are coming. Today was her last day for rounds -- she will be heading back to clinic. She fully expects to see us in clinic in a couple weeks.

We bought Matthew a new high chair for his hospital room -- Dr. Kurtzberg had suggested it. I put him in it today and he loves it. The high chair has wheels so I can move him around as far as his IV will go.

This weekend brings us to a changing of the homefront help once again. Grandma and Grandpa Sackett head back to our house in Maryland to continue taking care of our house and "kennel" (7 dogs and 4 cats). Thank you for helping us out down here for the month of June. And a very big thank you for continuing back up in Maryland. Please spoil the animals rotten -- as I know you do.

Thank you to niece Colleen who also was here helping for the month of June. Victoria and Sean will miss you terribly. Who will be Victoria's pool buddy? Who will Sean bite? I know you look forward to returning home to friends and family and sleeping in.

Another thank you to brother Bill for watching our house and animals for the month of June.

Welcome Rose! My sister Rose has graciously volunteered for the next three weeks to watch Victoria and Sean. What would we do without family?

Once again, thank you all for your prayers. Please keep them coming so we can see the WBC numbers go up.

Thursday, June 26, 2003 5:25 PM CDT

T +34

Well, I knew that when the nurses did not wake me last night the WBC did not go up. It went down to 0.2. Not the direction I like to see, but I am told not to worry.

Today Dr. Kurtzberg held a meeting in the family lounge concerning the move from the 5th floor to the 9th floor. They are renovating these rooms, so for three weeks all the patients on 5200 will be moved to the adult bone marrow unit. We originally thought we would be discharged by then, but I am beginning to think we will still be here. The move date is July 7th.

I do not care how long we stay in the hospital as long as Matthew grows cells and stays happy and healthy. The longer we are in here for the 100 days after transplant stay, the less I have to drive him back and forth to clinic and try to keep his mask on. I think Matthew would love to stay all 100 days since he loves the nurses so much -- that’s why he is holding back on the cells.

On rounds today everything went fine. I just said I wanted to see more cells and they said it will happen. I told Dr. Kurtzberg she had up until this Sunday with her 5-10 day prediction, Sunday being day 10. She feels the pressure is on now.

Dr. Kurtzberg said we will most likely go through the move to the 9th floor and stay for about one week before being discharged. She really did not see us coming back to the 5th floor. That is so wonderful to hear -- that she has the confidence that the cells will be in by then. She also suggested getting Matthew used to wearing a hat with his mask since he will need to wear them going to clinic every day. He received several hats for his birthday which will work great.

The nurses told me they have a new name for Matthew -- Flicker, since he flicks his finger against everything.

Wednesday, June 25, 2003 5:36 PM CDT

T +33

Dr. Kurtzberg predicted last Thursday, June 19, that Matthew would have WBC in the next five to ten days. Friday and Saturday were at <0.1, Sunday went to 0.1 and then on Monday back to <0.1. When she came in for rounds on Monday, she told me she looked at Matthews blood under the microscope and there were cells. That made my day.

Monday he began to get rashes. His cheeks and head were very red. I thought something more might be happening.

On Tuesday WBC was 0.2. We have seen 0.2 before, so I was happy but not sure what would happen today. She even told me if it goes back to 0.1 that it would be OK. The nurses draw the blood at 2:00 am. Usually the results do not come back until 6:00 am. The nurse came in at 2:30 am and said the WBC went up to 0.3. I had a very hard time sleeping the rest of the night -- I was pretty happy.

Overall Matthew is acting and feeling great. He continues to have a smile and laugh for the doctors, nurses and therapists who come in to visit. He also likes to flick his fingers. He flicks his toys, the crib, the nurses or just the air and with both hands. Apparently it is an advanced developmental movement -- having coordination. He enjoys it and the nurses love to watch him do it. He is also sitting by himself and has a lot of strength in his arms and legs. He continues to play in his saucer a couple times a day. He is also very stubborn. He likes to do what he wants, not what you want him to do. I like having that fight in him. He turns his aquarium on when he cannot sleep at night -- he will usually fall asleep to it.

For the last week he has been drinking about 2 oz. of Pedialyte a day and has a couple spoonfuls of baby food. He had his first graham cracker today. Dr. Kurtzberg is not interested in the amount he is eating but that he wants to and remembers how to. She also has no more concerns with his liver and gall bladder.

Dr Kurtzberg mentioned that Matthew had the most clouding of the corneas that she has ever seen in his age group. When we first arrived at Duke we never expected his eyes to clear up -- we had though he would always have a problem seeing. She had told us prior to the transplant that it would clear up and she believes it has. He does see much better.

Today on rounds Dr. Kurtzberg said everything looks great. They have cut back on his TPN (liquid food) to 18 hours, not continuous. Yesterday they cut back on his morphine.

We are very hopeful that the WBC numbers will continue to climb. Thank you everyone for all your prayers.

We received some sad news today. The family from Greece, on our hallway, lost their second child today. I cannot even imagine their grief.

Thursday, June 19, 2003 11:26 AM CDT

T +27

The excitement of having Matthew's WBC at 0.2 on Sunday did not last for long. Monday it was back to 0.1, and on Tuesday, Wednesday, and today it has been <0.1. Needless to say I have not been feeling that great. Dr. Kurtzberg has assured me that everything is fine. Some children take longer than others. She said Matthew would not have had the earlier reactions (rashes, high temperatures, etc.) if it was not working. She wanted me to calm down since I may be seeing 0.1 for awhile. As a mother it is very hard, but Dr. Kurtzberg's confidence reassures me.

He had a rough night Sunday crying more than usual. I had to hit the morphine button several times throughout the night. Monday morning I was concerned about his breathing. Dr. Kurtzberg came in and checked him. She then ordered an albuterol treatment four times a day that the respiratory therapist administers. (She shoots a spray at his mouth -- it is muscle relaxer.) I think it has helped.

Then on Tuesday he had an ultrasound. Dr. Kurtzberg wanted to check his liver since his bilirubin levels were high. Everything checked out fine on the liver but now they are watching his gall bladder. Since he is not eating foods he has a buildup of "sludge," but they have given him some medicine to help clean it out. He had another ultrasound today. She also mentioned that he may have a virus, which would affect the gall bladder and keep his WBC down. The only way to test for the virus is in his WBC, but since his WBC is low they can't test to be sure. She gave him an antibiotic just in case. Of course the mention of the virus scared me and she said it was a completely treatable virus, if he has it at all.

Wednesday went smooth -- no new tests.

I was also concerned that even after the WBCs come in, they have to be tested to see if they are the donor's or Matthew's cells. Dr. Kurtzberg was fairly confident that they would be the donor's, because of the reaction Matthew had earlier.

This is the hardest thing I have ever had to do -- just sit and wait. Even harder than delivering twins naturally -- with no drugs.

I had another bit of bad news this week. Elizabeth and Stanley from my apartment complex (I mentioned them earlier in the journal) headed back to California on Tuesday. She received her test results on Monday and her cancer came back. They decided to go back home to continue chemo. Hopefully they will be back in three weeks to start her transplant. We miss you guys and wait for your safe return.

Well some good news -- Victoria turns three today. Happy birthday big sister -- Matthew misses you.

Sunday, June 15, 2003 5:43 PM CDT

Day T 23

NEW PHOTO IN THE ALBUM AND MORE PHOTOS ONLINE. SEE THE LINKS SECTION BELOW.

Saturday morning Matthew's WBC was 0.1. I was very nervous since it hasn't been going up. We had cousins Emily, Colleen, and Michael, along with Aunt Cathy visit yesterday. Matthew also had a visit from the NASCAR folks. Matthew did not have a lot of smiles for all the company -- he was not feeling his best. I think he was wondering what everyone was going to do to him.

I had a chance to go out to dinner with the family last night in Chapel Hill. We had one last night out before several had to head back home. Thank you for all the help down here Michael -- we will miss you. Thanks for coming to visit and bringing all the food Emily and Cathy.

I was very scared to come back in today and look at the WBC number. I passed the nursing station and picked up Matthew's papers and was looking for the number when Matthew's nurse said "Did you see the number?" I said no. She said its 0.2. I was so emotional that I started to cry. As a parent you are on pins and needles just waiting for something to happen. Eric is handling this much better than me. I am the emotional mother.

Dr. Kurtzberg came in today and wanted to increase Matthew's morphine since he still seemed uncomfortable. She asked if I saw the WBC number. I said it brought tears to my eyes. She assured me that he was doing very well and that he is ahead of the average for WBC growth. She said not to be upset if the number goes back to 0.1 tomorrow. I was very happy to hear her words. She also wanted me to get him up and in is saucer. I had not pushed for that since he had not been feeling very good. She said I would be surprised and that he would like it. And he did -- he played quite awhile. Being upright is not only good for his lungs but she said the stuff he had been throwing up would start to come out the other end. That is better for all of us.

It is Sunday at 6:15 pm as I write this. I am leaving now to go back to the apartment and play and do tubby time with Victoria and Sean. I feel so much better than when I came in today. I will be back tonight and I hope Matthew is feeling better.

Friday, June 13, 2003 6:14 PM CDT

T +21

Unfortunately I do not have any WBC to report on. The past two days they have been around 0.1. The doctors and nurses say this is normal and fully expect the numbers to start climbing. As a parent you get very nervous just waiting. On rounds today the doctor mentioned he expected Matthew to have discharge papers after the next two weeks. It is so hard to believe when your child currently has no white blood cells.

Overall Matthew has been doing well. He is still throwing up a lot of mucous from the mucositis and it really scares him. It also wears him out. He has been in very good spirits and the nurses come by to get a smile and hear the new laugh he has. It is pretty funny. It makes his parents happy to hear him laughing.

He is back to sleeping in our arms in the chair at night but he tosses and turns a lot. We have not been getting a very good nights sleep. The morphine box has been completely removed. If we feel he needs something they will put it through the IV.

Tomorrow he is supposed to get a visit from the NASCAR people. I signed a waiver for them to take photos with Matthew so they can use for publicity. They raise money for the hospital.

Matthew just got a ride down the hall in one of the car toys. He was disconnected from the IV so we took advantage of being free. That is the first time in awhile -- I am glad he felt up for it. Today is the first time he has worn some clothing. With his fever being so high he has been wearing just a diaper.

Eric will be staying Friday and Saturday night again at the hospital. We have more company in town this weekend. Niece Emily (Matthew's Godmother) and sister Cathy just arrived this morning.

Tuesday, June 10, 2003 4:48 PM CDT

T +18

These last couple days Matthew has been getting more of his energy and beautiful smiles back. He is scratching himself because he is itching so much. We do not want him bleeding or getting an infection from a cut, so I have had to put socks on his hands. He does not seem to mind them but he cannot pick up any of his toys to play with. Even though I cut his nails very short before coming in here, they have grown back and need to be cut again. The nurses say it is up to the parent but do not suggest doing it.

The doctors think Matthew is looking very good. They had to change a medicine the other day -- too many t-cells were coming to the skin and making him have a very strong rash. Even though rash is good, too much is bad. They mentioned the skin can start to peel in layers. So his skin looks much better today. We still do not have any white cells. They said the average is 25 days. It's one more week before Matthew hits 25 days. He has been throwing up a lot as well. They said to expect it for about a month.

The physical therapist came in today and worked with him -- he did real well. His sitting has improved but he still has a long way to go.

Today they started to cut back on his morphine. He has had a continuous flow but we have not had to push the button for extra in days. Hopefully we can get him off it all together soon.

Saturday, June 7, 2003 6:35 PM CDT

T +15

Eric spent Friday night with Matthew. He said things went well. Matthew had some energy and played with his dad. Eric was also able to hold and sleep with him Saturday morning. When I arrived, Matthew was sleeping in the crib. He needed a diaper change and woke while I was changing him. He started to fuss and I knew he wanted to be held.

We settled into the chair and he took a nap. The doctors came in to see him and were very happy to see him out of bed and in my lap. A good sign that he is getting some energy back. The doctor said that older children explain to them that at this time they start to feel better and then a couple days later the cells come in. Matthew has red rashes everywhere -- another good sign of cells.

We have some wonderful neighbors back at the apartment -- Elizabeth and Stanley. They came over last night and brought toys for Victoria, Sean and Matthew. I missed their visit since I was still at the hospital. Hopefully I will run into them tonight on our walk or at the pool to thank them. Elizabeth is in her forties and going through what Matthew is -- donor stem cell transplant. Unfortunately she has cancer and has been fighting it for nine years. She is currently undergoing outpatient chemo before she will be admitted for the transplant. They are from California. They are in my prayers nightly.

Friday, June 6, 2003 6:30 PM CDT

T 14

It has been hard watching Matthew yesterday and today. He sleeps in his crib most of the time, occasionally waking and wanting to be held. Holding him has not been the same. He squirms in your arms--he cannot get comfortable. He seemed to feel better today. I was able to hold him and we slept for several hours.

They increased the morphine today just to make sure he is getting enough to be comfortable--and not hurting. One side effect of morphine is itching. He has been rubbing his face often. They gave me hydrocortisone cream to use on his face and triamcinolone acetonide cream for his body. His face seems to be bothering him the most. They have another drug if the itching gets worse. As I write this, the nurse is starting him on an IV drip for the itching--naloxone. He also received some platelets.

Matthew will look up every once and awhile and give a small smile. It makes me so happy to see, but it does not last for long. The doctor said he expects Matthew to be much better by Monday. When they were in today they thought he looked good and felt he had reached the worst part of the muccositis. He continues with the oxygen.

The doctor wanted Matthew's mucus sucked out this morning. They had to put some tubes down his nose. Not enough came out to make it worth continuing. He has heavy breathing and only makes a little noise. Hurler babies generally have very small airways and that makes it very hard and very loud to breath. His lungs sound clear. They check that to make sure he does not have pneumonia.

Matthew's neighbor Juan had to go to intensive care last night. I have seen his family here more often. Say a prayer for him.

Matthew has lost most of his hair. His temperature was 98 today. It is wonderful to see the fever over. His occupational therapist wanted to work with him yesterday and today. I told him no--Matthew was too much out of it. The doctor expects him to be like this. Everything has caught up to him and he is just exhausted.

I get to spend the night at the apartment tonight and Saturday night. I look forward to being with Victoria and Sean and getting to put them to bed and wake up with them. Now that Aunt Susan is gone Sean really is starting to remember and want to be with me--that is a good feeling. I know he misses Aunt Susan.

Eric posted a couple new photos on the photo page.

Wednesday, June 4, 2003 4:25 PM CDT

T +12

Matthew had a rough night last night. He would get settled and then wake up. He was receiving oxygen and one of the monitors' alarms kept going off and waking both of us. This morning he slept in the crib until around noon. He woke occasionally, cried, and then fell back asleep. This afternoon I held him and he slept. He continues to have the oxygen. His temperature has been going from 99-101 today. He is very cranky when he is awake but soon falls back to sleep.

Tuesday, June 3, 2003 7:42 PM CDT

T +11

It has been a rough couple of days.

Sunday night he woke at 3:30 in the morning with a high temperature so I had to place him in the crib. He would not go to sleep so I sat beside his crib and rubbed his feet. He just wanted to be held but I knew I could not pick him up. When the nurses changed at 7:00 in the morning I asked if there was any way I could hold him. My nurse devised a way of keeping my body heat from Matthew. I was able to hold him and he slept for a good part of the day in my lap. It was great to see him getting some rest. They raised his dosage of morphine and we can also push a button every eight minutes for more if we feel he needs it. His temperature went up to 106 and he was feeling pretty lousy. I had to keep putting cold wet rags on his head, arms and legs to try and get the temperature down. When the doctors saw him yesterday they were pretty sure he was engrafting but needed to wait and see the results of some of the blood they had taken. They need to make sure this fever is not from any infection.

I gave Matthew a bath around 7:30 and made sure Eric understood everything we devised for holding him. They do have something called a cooling blanket that blows air on the child but the nurses do not like it especially since he is already shivering. As hard as it was for me to leave Matthew I went back to the apartment to get some sleep.

Eric said he had a fairly good night. Matthew slept with Eric in the chair. When I got back to the room Tuesday morning I was surprised to find the physical therapist working with him. I was shocked that he felt good enough to work with her. Eric said that the occupational therapist had already been in working with him.

His temperature has been going from 101 to 103 all day. He slept in my lap for a couple hours. I moved him to the crib and he has been asleep all afternoon. He wakes occasionally cries a little and then will fall right back to sleep. I keep changing the wet rags I have on him to cool him off.

They have started the "steroid pulse" today with Matthew. It means giving him four large doses of steroids over a period of time. This will suppress his immune response. They mentioned that this will make him very irritable. He will be irritable from the steroids and from bone pain. The older children describe the pain as fire going down their legs, arms, and back.

Today is also Matthew's Birthday. He and his brother Sean are one year old today. Hopefully this being sick is a good birthday present. It is not nice to watch as his parents, but hopefully he will be feeling better soon.

The doctor just stopped in to see Matthew. The nurse and I were so happy to tell him his temperature was 99. That is the lowest it has been in days. He said that hopefully in 5 days we will start to see some cells.

Sunday, June 1, 2003 7:23 PM CDT

T +9

Eric -- Well, it looks like we may be growing cells. At least I hope so. I spent Friday and Saturday nights with Matthew, and he was acting fussy both nights. This morning he had a slight temperature and high blood pressure. The nurses gave him some medicine for both, and when Peggy took over at noon, he was in relatively good spirits.

But when I returned this evening, Peggy told me he had a small fever all afternoon and was very cranky. She went home for dinner and I took over. Matthew just wanted to be held.

About 7:00 pm, the nurse took his temperature and it had hit 105 degrees F. Not good. They expect the fever, but they need to control it. We decided he should be in the crib away from my body heat and we stripped him of his clothes. We put a cold washcloth on his forehead. They started the morphine on a continuous drip too.

His temperature is now at 104F and he seems a lot better. His blood pressure came down too. I think the morphine has mellowed him out. But I don't think Peggy will be able to hold him tonight if his temperature stays high.

He also has a rash, which is another sign of cell growth. None of these reactions are unexpected, and are necessary for him to grow his new blood cells. Hopefully he will start to feel better in a few days.

Friday, May 30, 2003 7:31 PM CDT

T +7

You can tell that Matthew is starting to get a little upset at times. He woke this morning crying but it soon turned into a smile. I do notice him crying more but when you pick him up he seems to get better. He had a good day and continues now playing in his saucer. The only thing you have to watch out for in the saucer is him going around in circles and getting wrapped up in his IV tubes.

Today was another sad day on the floor. This morning I found out another boy died -- he was approximately one year old. The family is from Greece and they have two children here that were undergoing treatment. They have been here a long time and sadly lost the younger of the two boys. It must be very hard for them to remain on the floor, but they still have a the three year old here. The hospital staff called a meeting for any of the parents who needed to talk about this past couple weeks since it has been a very difficult time.

Matthew had a physical therapist work with him today -- he did well.

We are waiting for dad to arrive so we can take Matthew for a walk in the hallway. It is about 7:00 pm. Dad is spending the night both Friday and Saturday. I get two nights at home in a bed with no interruptions.

We have the changing of family at home this weekend. Aunt Susan will be going home. We appreciate all the time she has taken off of work to help us with this. I am not sure how Sean will do since he has gotten used to Susan as mom. In Susan's place will be niece Colleen, nephew Michael and Grandma and Grandpa Sackett. It takes four to replace one Aunt Susan.

Matthew's hair has been really falling out today.

I had a very nice visit today from Nancy Ramsey, her mother and adorable son Nolan. Nolan is several weeks ahead of Matthew. He received his transplant when Eric, Matthew and I arrived at Duke. He is now finishing up his 100 days at the same apartment complex we live at. Jack who is two doors down from Matthew just had his transplant today. Both Nolan and Jack have Hurlers like our Matthew.

www.caringbridge.org/co/nolanramsey
www.caringbridge.org/mo/jackshuler

Thursday, May 29, 2003 9:56 PM CDT

T +6

Today started out nicely. Matthew woke with a smile. He had to have a blood transfusion over night. He played in his saucer and crib with all his toys.

I received news today that a seven-year-old boy died last night. He had been on our floor but was moved to intensive care a couple weeks ago. He is the second boy that has died since we have been on Unit 5200. It is a very sad time. We also had a little girl have a going away confetti party today. We see both sides of the spectrum, happy and very sad.

The nurse told me she would watch Matthew so I could go for a walk since she saw how emotional I was. I did not want to go out and I did not want to leave Matthew. Usually I will do laundry, work on the computer or visit with other parents but I just wanted to be with Matthew. He took a long nap in my arms most of the afternoon.

The doctors came by on rounds. I mentioned I was noticing Matthew breathing harder. They said it was the mucositis setting in. I kept expecting to see mouth sores but that does not always happen. The doctors mentioned that Matthew was doing very well -- they were surprised he has not had to have any pain medicine. I asked when I would know if he needed it. They said when he stops smiling and does not sleep through the night. His blood pressure was high today so they gave him some medicine. I am so grateful that he still has a beautiful smile for everyone who comes in the room. I think all the nurses come in to get a smile -- it makes their day.

He has an occupational therapist who visited with him today. He also has a physical therapist. They both work on trying to get him to sit and do other movements that someone his age should be doing.

If everyone could say an extra prayer for the boy who is in the room next to Matthew it would be greatly appreciated. I do not know his whole story since patient information is confidential and nurses cannot talk about it. I'm concerned about him because I rarely ever see any parents or visitors. He is alone most of the time and today he turned sixteen. I was told his sister visited him this morning. His name is Juan.

It looks like Matthew may be starting to lose his hair. I noticed some on his blanket. Let's pray Matthew's smiles keep coming -- I love waking up to those smiles.

Wednesday, May 28, 2003 6:20 PM CDT

T +05

Victoria, Sean, nephew Michael and myself went on a trip to Toys R Us last night. We needed to find Matthew some new toys for his teething. He seems to like the IV tubing as well as his crib bars. We bought a big selection and I have been spending today trying to have him chew his new toys and not the crib and IV tubing.

Matthew has been doing well today. Has been playing and smiling for all the nurses. When the doctors did the rounds, Matthew was as happy as ever. They said he was doing very good with all his levels. He did not need a blood transfusion last night. He has a slightly high temperature today, but is still happy. They said that the higher temperature is normal.

Our neighbors at the apartment had their son go home today. He is a 12-year-old who has had a pretty rough time here since January. The nurses, parents and patients line up and throw confetti to celebrate the patient's final trip down the hallway. Matthew and I missed it because the doctors were in our room. We got a chance to throw confetti yesterday to a 2-year-old girl who was leaving.

It is about 5:30 and we are waiting for dad to arrive. He is running late tonight. The nurse and I just finished changing Matthew's central line dressing. We have been changing them every day since his skin has been looking red. This was the first time they looked good enough to put the weekly dressing on.

The nurse changed all the IV lines, so we were unhooked for about 15 minutes. We took advantage of the time to take a ride down the hallway.

It is about 7:00 pm and Matthew is still feeling good. Eric has just arrived so I am heading back to the apartment for a couple hours.

Tuesday, May 27, 2003 6:16 PM CDT

T +04

We have had a very comfortable day so far. Matthew played in his bouncy seat then we went into the hallway for a walk. We are allowed to walk down the hallway in this unit only. There are a lot of toys that the children can ride, but they all must wear their masks when out of their rooms and take along the IV pole. Matthew's speech therapist was visiting with him today, so she helped us go walk the hallway.

Matthew also met his Best Buddy today, Lauren. She is a senior here at Duke and volunteers for the Best Buddy program. They come by the room whenever the parent may need a break, go shopping for you, or even play with your other children. They are a big help and I am sure I will be making use of her services.

The doctors did their rounds today and said everything looks as they expect it to. His platelets are low so he is now getting some through the IV. He may need a blood transfusion tonight. That will be about his third blood transfusion since being in here. He just woke up from a short afternoon nap.

We are waiting for dad to come and relieve mom. We'll both take Matthew for a walk down the hall before I leave, just to get him out for awhile. He is doing great keeping his mask on. It is good practice since he will be wearing it for a year outside the hospital whenever we need to be out in public.

I will go back to the apartment to play, go for a walk, and have dinner and tubby time with Victoria and Sean. I usually get back to the hospital around 9:30 and then give Matthew a bath and try to get him settled for the night. He loves his bath time.

Matthew has finally said "mama" the last two days. But not as often as "dada." I am working on it.

Monday, May 26, 2003 3:08 PM CDT

T +03

Eric spent the night Saturday and Sunday at the hospital with Matthew. It was nice to have two nights at home with family. My sister Cathy, niece Julie and nephew Michael drove down to Duke on Saturday. They all came in to visit with Matthew. Cathy and Julie headed back to Maryland today. Michael will stay for another three weeks. Victoria is very happy -- she loves Michael.

Matthew has been doing very well. I am very nervous expecting him to change any minute -- like the doctors have told us would happen. It is so nice to still see him smiling. He just finished playing in his bouncy saucer seat. He was jumping up and down and playing with all the attached toys. It wore him out--he is now sound asleep in his crib.

Saturday, May 24, 2003 5:35 PM CDT

T 01

Peggy -- Matthew and I had a very good night sleep last night. He wanted to be held so I got comfortable in the reclining chair and we slept from 11:00 until 8:00 this morning. He is not bothered at all when the nurses come in at night to give him drugs when he is sleeping with either mom or dad. When he is alone in the crib he always wakes up crying when the nurses come in all night long.

He had a bath this morning and played for a long time until he finally got tired and took a nap around 11:00. It is now noon and he is ready again to have some play time. He has a little chair, with a wonderful aquarium attached, that he sits in to give a different view than just his crib.

Eric -- Cathy, Julie, and Michael arrived early this afternoon. Victoria is very happy to have the visitors. She already took Aunt Cathy on two walks!

I took Cathy and Julie with me around 4:00 to relieve Peggy for the night. I showed them the children's clinic, then they came up to see Matthew. Peggy is taking everyone out to dinner tonight. I'll be spending the night with Matthew. He seems to be doing well, but he has a slight fever.

I uploaded a new slide show of transplant day that Aunt Susan put together. Enjoy the show!

Friday, May 23, 2003 6:25 PM CDT

Transplant Day!

The lab called the nurse this morning and said the cord blood would be delivered around 11:30 am. Matthew was in a very good mood.

I gave Matthew a bath and dressed him in the new patriotic outfit Aunt Susan got him. Eric, Susan, Victoria and Sean came in the door around 11:15 and Matthew was all smiles. He knew they were here for his party. As you can see in the pictures, Aunt Susan had matching outfits for all three. She bought them last year at the Smithsonian thinking they could wear them this 4th of July. It is a little early for that, but it is a great celebration anyway.

His nurse today was Michelle. Kelly is his primary nurse whenever she is working. Kelly came in on her day off so she could be at Matthew's transplant party.

They gave Matthew a drug before they started the transplant. It made him very sleepy. He slept through the transplant. All they do for the transplant is hook the bag of new blood and stem cells into his central lines. The cord blood came from St. Louis, Missouri. The donor is a female and his blood will switch from A Positive to O Positive.

The room smells like cream corn. Matthew will also smell like that for a few days. It is the preservative they put in the cord blood.

Matthew has been sleeping most of today. He just woke up around 3:30 pm so I could change his diaper and very wet clothing. He has gone right back to sleep.

The doctors tell us that the next two weeks will be rough. Please keep him in your prayers.

(We will be adding more pictures this weekend.)

Thursday, May 22, 2003 6:10 PM CDT

T -01

We have Internet access in the hospital room now, so you can email Peggy directly at peggy@dennisandsackett.com. The link is also at the bottom of this homepage.

Matthew is in relatively good spirits. This is the first I've seen him since his ATG treatments started, and I'm surprised how well he is doing. But the doctor is warning Peggy that the rough weeks are still ahead.

ATG suppresses the immune system. The side effects are high fever and nausea. So far Matthew's temperature has been normal, and he's been in fairly good spirits.

Tomorrow is the big transplant day. Victoria, Sean and Aunt Susan will be visiting to celebrate the infusion of stem cells, and I promise to post pictures. It isn't that exciting to see, since it is just an IV of the stem cells and over in half an hour. But it's the big day we've been waiting for.

We'll have more to update as the days go on, and we wait for the new cells to grow.

Sunday, May 18, 2003 2:54 PM CDT

T -05

Matthew continues to be in his normally mellow, but happy, mood. He is hardly bothered anymore when the nurse takes his vital signs.

We met our second celebrity visitor at Duke today -- Jeff Foxworthy. He was in town for the Duke Children's Classic golf tournament. http://dukehealth.org/childrens_services/classic.asp He was very kind and we enjoyed meeting him. Unfortunately, we didn't have our camera, but he autographed a photo for Matthew.

Our first celebrity visitor was Jeff Burton, the NASCAR race driver. He was in the clinic a couple weeks ago, and he gave Matthew a couple toy cars.

Matthew started his first dose of Cytoxan this morning. This is a slightly stronger chemotherapy drug that he will get for 4 days. There are stronger potential side effects, but he is doing well so far.

Dr. Kurtzberg was making rounds today, and she was very happy with Matthew's progress. She felt that it was likely that he will be out of the hospital by the end of June. Of course the worst is yet to come. She said that the first two weeks after transplant are the roughest.

We try not to get our hopes up too much, but remain hopeful.

Thursday, May 15, 2003 10:12 PM CDT

T -08

I'm going to start labeling the days based on the transplant date. So today is T -08 (transplant minus 8). That means we have 8 more days until the planned day of stem cell injection (May 23rd).

Matthew is in better spirits today. I'm not sure why, but we'll take it! He isn't really getting any drugs yet that should cause major discomfort. I guess he's just adjusting to being in the hospital.

Currently, Matthew is getting Dilantin and Busulfan. The Dilantin is anti-seizure medicine to counteract a side effect of the Busulfan. The Busulfan is helping to decrease his white and red blood cells. It is the first stage of the chemotherapy. He will get these for four days total, before the next set of drugs.

I've uploaded some new pictures, including some animated "slide shows" put together by (Saint) Susan Dennis. She is currently helping us down here at Duke in many ways.

Tuesday, May 13, 2003 10:44 PM CDT

Well, Matthew is in his room and the treatment is underway. They've started the chemotherapy phase to destroy his current bone marrow and immune system. This will take about 10 days total.

The doctor said the first drug won't have too many side effects, but can cause seizures. For this reason, Matthew is also on an anti-seizure medication.

It will be about a week before the chemotherapy starts to get intense. At least we will have time to adjust to life in the "unit" before too much starts to happen.

Tuesday, May 13, 2003 9:43 AM CDT

Today looks like the day Matthew gets admitted. Finally! I'm not really looking forward to this, but I'm glad the process is underway. Now lets pray that it goes well and Matthew makes a quick recovery to leave the hospital.

Tuesday, May 6, 2003 11:21 PM CDT

Matthew had surgery for his central lines today. He went in around 1:30 pm, and was finished around 2:45 pm. He was crying when he came out of the operating room, but the nurse in the post-op gave him something for the pain. He slept as we took him home around 4:00 pm, and didn't wake up until 8:30 this evening. He seemed in good spirits, and ate and drank normally. He went back to bed around 10:30 pm.

We were supposed to be admitted to the hospital today to begin the chemotherapy for the transplant, but they don't have a bed available in the unit. They said it might be Sunday before he can be admitted. At least Matthew will have time to recuperate at the apartment until then. We will have to take him to the hospital daily so the nurses can flush out the lines.

The lines are tubes that go right into his veins and stick out of his chest so the doctors and nurses don't have to poke him with a needle everytime they need blood or to administer an IV. He has three lines altogether.

This past weekend my brother and his wife Susan came down and brought our little girl Victoria and son Sean to stay with us. It has been wonderful being reunited with the family. Such a pleasure going back to the apartment and seeing familiar faces. We even had a friend from DC, Chris, stop by while he was in town on business. It's so nice to see friends and family.

Check out the new pics in the photo album.

Sunday, April 27, 2003 11:53 AM EDT

Just some information to bring this up to date.

We have been here almost 3 weeks, but it feels like 3 years. Matthew has had a Tonsillectomy, Adenoidectomy, and Myringotomy with insertion of tubes. The tubes are in his ears to drain any fluid that may build up prior to an infection. These are preventive procedures done to Hurler patients to help avoid infection and breathing problems during the chemotherapy and recovery period.

On Friday, April 25th, he had surgery to insert a VP shunt to drain the excess fluid around his brain. All went well and he is out of the hospital.

He will have another surgery for his central lines on May 6th and then be admitted to the hospital for the start of chemotherapy and transplant 10 days later. Matthew will be in the hospital about 55 days, and we will need to stay here for another 1 to 2 months for outpatient care. It will be one year after the transplant before it is considered complete.

Thanks for everyone's thoughts and prayers.

Sunday, April 20, 2003 11:00 PM EDT

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