Journal History

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Saturday, January 13, 2007 2:19 PM CST

hello our family has not updated in a while .our kittens our all grown up.they our so cute but i want them to be little again.luke is doing great.he,s in kindergarten and knows how to write some letters.the words he knows how to spell are like,me,zoo,stop,and mom.his favorite chistmas present was a thamas the train quarry mine tunnel.the christmas tree looked great.natalie devolder.

Tuesday, October 3, 2006 2:37 PM CDT

Sorry it's been so long since my last update. Things really slowed down for Luke as far as new stuff to report. But the latest is: We went to the MPS conference in KY at the end of July. It was fun to meet other families and gather updated information. Luke made many new friends. He has started kindergarten and is loving it. He's getting a one on one aide. and I think this will really improve his progress. He also receives therapies at school, along with weekly specials(music, art, gym and library) so he is very busy and very tired at the end of the day. Medically, he needs his flu shot, suppose to start heart medicine and continues to battle lung issures. We have not scheduled any type of hip surgery as of yet but know we've got to soon(ignoring it doesn't make it better) but mentally we aren't ready yet. Hope everyone has a happy fall, Love, Sheila.

Thursday, July 20, 2006 6:41 PM CDT

hello, i'm Natalie, Luke's sister, I want to give you an update. Luke is doing great. We are going to Covington, Ky next week for a MPS convention. We can't wait. Our cat had two kittens but they run when they see Luke. bye

Friday, May 19, 2006 12:46 AM CDT

Sorry it's been soooooooo long since I've updated. I plan on putting new pictures on, Luke has changed so much since the last pictures were posted. Then I think I'll end the web site, it was a great help to me during the trauma of diagnosis, transplant, and recovery but now it's hard to keep up and Luke is steady in his progress. Please look for one more update(if anyone is still checking). Luke has been doing wonderfully and has really improved both physically and mentally the last year. Next year will be the start of kindergarten. We are ready to move on and up. The biggest complaint is attention span, but I'm not ready for medicine just yet. Please pray for that to improve for him.
We are going to Minnesota in June for all the usual check-ups. I'm most anxious about ortho. I'm in no hurry to do any major bone surgery. We are also going to our first MPS conference in July in Covington, Ky. We are very excited.
Thanks for checking in and I hope you have a safe summer. Please keep Luke in Prayer for his attention to improve, his lungs and heart to remain strong, and him to physically get more endurance. Thank You Sheila.

Thursday, October 20, 2005 5:33 PM CDT

Luke had an exciting week at school. First another little boy bit him in the arm but did not break the skin. Then the next day his bus broke down in front of a fire station on the way to school and the three boys that ride the bus got to tour the firehouse. They sent another bus to pick them up and the original bus had to be towed. Very big stuff for a little boy. His school pictures turned out just great and I'll try to update the pictures next week.
So far his health has been good, breathing good. Hurray! Praise God! I'm going to get him the flu shot soon, I took Luke to the Dr. to get it and all they had was the kind with mercury perservative so I have to wait till the kind without perservative comes in.
Luke's b-day is November 6. He will be 6. He wants a Thomas the train set($$$$$$) but he will get some pieces and if he truly is interested I will add to it for Christmas. Have a nice Fall. Check back for pictures. God Bless, Sheila.

Tuesday, September 20, 2005 11:02 AM CDT

hello, we went to visit Luke's classroom last friday and met some of the other kids and parents. Luke is the oldest one in his class we thought it would be better for him to do another year of pre-school as the biggest/more experienced than to start kindergarten as the smallest/needing help. It seems to be working out very well. Especially if he has hip surgery and is out for a significant period. The Surgeon is reviewing the x-rays and is going to call me this week. I think depending on what he says that if surgery is needed (it is) I will push for this winter so that he will be fully recovered and ready for school next fall.
Health wise Luke has been blessed this summer with no urgent problems. He does need breathing treatments occasionally. I think I will do the flu shot this fall, Luke was sooooo sick last winter with 4 hospital stays I want to do everything I can to avoid that this year. If he does have surgery he will be home at what I hope will be most of the flu season. The school will do home visits for pre-school and therapies.
On October 8, we will do a MPS run in memory of Carly Richardson. This is our first event/fund raiser for MPS we are looking forward to it. The kids will be out getting pledges. I think it will be alot of fun. I'll update when it's over. Take Care and God Bless, Sheila.

Tuesday, August 23, 2005 10:17 AM CDT

Dear friends of Luke, this update is from his sister Natalie. Luke's going to have hip and knee surgery sometime soon. He's doing really good. He is fun to play with, and he likes to play hide and seek. Thursday he is going to start school. He is sometimes crazy. He talks to everyone he meets. He asks them countless questions and weird ones too. Luke keeps things lively. His favorite food is cookies. He loves Thomas the tank engine and Barney too. We have seen Barneys Christmas many many times. from natalie oh he loves Teletubbies. bye.

Sunday, June 5, 2005 12:49 AM CDT

Hello, I'm writing from the RMH. We are actually staying at a KOA campsite in St. Paul because the House is full right now, we should get a room tomorrow or Tuesday. Luke lost his first tooth! It's the first normal childhood development I can ever remember him having. I can see his new tooth erupting, I will post a picture soon. Write more as we go through our week of appts here in Minneapolis. God Bless, Sheila.

Tuesday, March 29, 2005 3:48 PM CST

Hello, again we are in the hospital. We had a virus go thru our house and of course Luke got it and it turned into pneumonia, I have a terrible sore throat and have been unable to sleep here, it's been a rough week for our family. Please keep us in your prayers, hopefully this will be our last visit to the hospital for awhile as this makes 4 times this winter. But Spring is in the air and no one is more thankful than me. Thanks for checking in..... God Bless, Sheila.

Saturday, March 5, 2005 12:40 AM CST

Greetings, Luke has gotten out of the hospital and has been doing very well. We are all ready for spring, he told me how much he wants to wear shorts so I let him wear them in the house because winter has a strangle hold on us! The two main issues with Luke besides his lungs are eating and easily distracted. I try everyday to make progress in both these areas but it is very slow.
We are scheduled to go to Minnesota the first week of June. The kids always look forward to the trip. Luke has his trigger fingers released this year so we'll stay a little longer. Everything else seems stable with Luke. Thanks for checking. God has blessed. Sheila.

Friday, February 11, 2005 12:32 AM CST

Happy Valentine's Day! I'm writing from the hospital again. We spend all our holidays here. Luke again has some pneumonia in his left lung. We got here yesterday and are hoping for a short visit. I've been talking to Minnesota and have scheduled his check-up in June. He will have hand surgery while we are there also. The kids are always excited to go to the RMH.
Up to just getting sick Luke had been doing really well. He is loving school. He has mastered riding a tricycle and jumping. He gets lots of physical therapy. His speech is awesome. Everyday he learns more. And he really loves to ride the bus. I am very thankful for everyone who still checks on Luke, please say a little prayer that his lungs get stronger that is our biggest issue right now. God Bless, Sheila.

Thursday, December 23, 2004 2:53 PM CST

Season's Greetings, Luke got the flu starting last Wednesday and it turned into pneumonia and we are at the hospital, hopefully we'll go home tomorrow. He is doing much better but is still requiring oxygen. Poor little guy.
I hope that all of you are healthy and well this Christmas Season. Have a Merry Christmas and a Happy Healthy New Year. God Bless, Sheila.

Tuesday, October 26, 2004 4:53 PM CDT

We are in the hospital! Luke had an asthma attack Sunday night and here we are in the get well hotel. Today we moved from PICU to the regular floor so he's making progress, when we first came in they thought they might have to put him on the vent. Thankfully with IV steroids and a continuous steroid inhaler and oxygen we avoided all that. I'm going to pay alot closer attention to Luke's breathing. Now if we can get out of here before he catches anything. I always disinfect the room and bed when we first come in and hang wash your hands signs up. BMT habits die hard. Please pray for Luke and that he recovers and stays healty the rest of the winter. Thanks Sheila.

Thursday, September 16, 2004 11:27 AM CDT

Greetings, sorry it's been so long since my last update. Luke has started school. It's an early childhood development delayed class, there are 4 students as of right now so he's getting lots of attention. The only negative is he goes in the afternoon which makes for a long day for him. He often is asleep when the bus brings him home and he can be a little cranky come evening. There is the issue of his health being compromised from being so run down, I can change him to morning but that would require an extra trip because our school district is scheduled in the afternoon. We're going to give it a little longer.
The eye Dr. in Minneapolis wrote a perscription for Luke to wear glasses. His eyes tested 20/60 but I haven't got them yet. I want to establish vision and hearing to be done in Michigan because those things will require follow-up that Minneapolis is too far for. Next month he has appointments at U of Michigan to have eyes and ears checked. Dr. VanHeest had hand splints made for Luke and we seldom put them on, it's one of those things that are easy to forget. She is suppose to do surgery next summer to release his trigger fingers. I have to establish a relationship with a hand specialist here for follow-up and I think I'll make an appointment soon so I can get hand-splints remade and worn.
Luke is completely potty-trained. Physically he has trouble keeping up with his peers such as climbing on monkey bars or other difficult play ground things. He is learning to pedal a tricycle. Each day I think he continues to do more and more. We feel very blessed with how well Luke is doing. Thanks for checking in. God Bless, Sheila.

Wednesday, July 21, 2004 6:25 PM CDT

hello from Michigan, Luke had a really good check-up in Minneapolis last week. The best news was from the orthopedic surgeon who said Luke does not need any surgeries at this time and he is going to watch it and take x-rays again next year but Luke's back and hips have improved from last year. We were thrilled with this news. Praise God! He will need his trigger fingers released and carpel tunnel surgery next year when we go. For now we are doing hand splints and seeing a hand therapist here in Michigan. We have yet to wear the splints. Neurophsych went well they are pleased with his progress but are still recommending lots of therapy. We are taking the summer off but Luke will resume school and therapy in the fall. I have him in a lower level preschool right now which has a smaller teacher to student ratio but he could go to headstart which has a higher level curriculum. I haven't decided which I want to do yet. He did get a prescription for glasses which is a very low strength. His vision is 20/60 and the eye doctor said try them and if there isn't any difference in how he sees he doen't have to wear them. I haven't got it filled yet I'll let you know. Luke is having a really fun summer and has done alot physically. Everyday I see improvements and for that I'm very grateful. Thanks for checking in, hope to hear from you, God Bless, Sheila.

Monday, July 12, 2004 10:36 PM CDT

I just typed a whole page of update and it's lost in cyberspace somewhere! It's late so I'll update more tomorrow. We are in Minneapolis. Luke is doing great. Hope you all are also. take care. Talk to you soon. Sheila.

Saturday, June 12, 2004 12:23 AM CDT

Hello, Luke had his engraftment and enzyme level checked again, and again we were blessed with great news. engraftment went up to N=72% and M=60% and enzyme was 21.7%. We are thrilled with these result. Luke has finished school and is enjoying summer. We will take him to Minneapollis the beginning of July for his 2 year check up. I'll write more then and update pictures. He has grown so much I have to show you. Thanks for continuing to check and God Bless. Sheila and Eric and kids.

Monday, April 26, 2004 9:09 AM CDT

Greetings, Luke is doing just fine. Right now he is at school. He loves school. Today he has physical therapy but since the weather has improved he has been very active outside. He has started to jump( a big accomplishment). We are working on peddling his tractor. He has also learned his abc's it's so cute when he gets to lmnop. I think he learned to sing them from Barney. I took him to his pulmonologist last week and Luke had grown 2cm in one month. Yea! His feet has also grown since I couldn't stuff his feet in his shoes anymore. We will go back to Minneapolis in June so I'll post enzyme and engraftment results soon. We have noticed Luke is more flexible so we feel enzyme must be present. Luke's biggest obstacles are his breathing ( I couldn't live without his nebulizer) and eating, he isn't into variety at all. But I keep trying to work with these issues. The school is providing zoo passes in two weeks so we are looking forward to going there. We are hopeful for a fun summer. Keep in touch and God bless, Sheila.

Saturday, March 13, 2004 1:19 PM CST

Hello, Luke is doing really well. He has added another day to school and now goes M-Th. He traced and colored a picture yesterday almost staying in the lines. The only problem right now is his height. He has only grown 1/4 of an inch in the last year. I was very reluctant to go talk to anyone about growth hormone. I might just find out about it now where before I just was so against it. Does anyone have any experience with it? Otherwise, Luke will just be a little on the short side but that would be ok too. I'm still waiting for my appointment schedule from Minneapolis which will be sometime in May. I hope it's warm then. Thanks for keeping up with Luke and I'll post new pictures next time, leave a message if you will.... God Bless, Sheila

Saturday, February 21, 2004 1:18 PM CST

An update......Luke is doing fine. He did have a sinus infection last week but the Dr. called me in some antibiotics over the phone and I didn't even have to take him in. We are sooooooo ready for spring, this has been a tough winter for Luke. He's ready to get outside! We've added an extra day of school so he'll now go M-Th and have a three day weekend. Luke loves school. They are setting up a May visit to Minneapolis. I hope it's warm there then. Please leave a message. Thanks and God Bless, Sheila.

Tuesday, January 13, 2004 7:29 AM CST

Hello, well, we are STILL in the hospital. This RSV really has Luke down. He is improving but slowly. We hope to be out of the hospital tomorrow. As soon as he is off of oxygen we can leave. He is now at 1 1/2 liter down from 3. He is drinking more but eating very little. He is sleeping alot. I miss him. He doesn't even want me to hold him, he just wants to lay down. The nurses asked me if he could talk and usually he doesn't stop talking. I'm so ready to be out of here. Say a little prayer for Luke. Thanks, Sheila.

Friday, January 9, 2004 2:23 PM CST

Happy New Year! Luke has RSV and we're in the hospital. No way to start a new year! He definatly does not feel well. Yesterday was the longest day, we started out at his physicians office, then a 45 minute drive to another hospital and a 7 hour stay in the ER before finally coming up to a room at 9 p.m. to top it off they tried 5 times to start an iv with no luck, so I told them forget it, we'll do oral meds and push the fluids. He is a little dehydrated but they are keeping an eye on that and Luke has done better drinking today. But through it all Luke has been a trooper and takes everything alot better than I do. Right now he's on 3 liters of oxygen but as soon as he's off the oxygen we can go home. I was ready before we got here. Keep Luke in your prayers. Thanks, Sheila.

Sunday, December 21, 2003 9:19 AM CST

Season's Greetings, We are at my brother's having an early Christmas. Luke got Bob the Builder lego set and a Nativity scene. He is thoroughly enjoying Christmas. I think this is the best year yet. The only year so far he hasn't been sick or isolated. I want to take him to Christmas Eve service and am hopeful he'll remain healthy. He made lots of Christmas art projects in school and got gifts from his teachers and bus driver. He loves our Christmas tree and the Christmas music. We are blessed.
He had his heart checked two or three weeks ago and there is no change. Good news and he'll have rflp's done the first week of January. Katie called from Minnesota and I have to take Luke in for the flu shot. I'll call on Monday to do that. I know it's a huge concern this year. I no longer take Luke to the Grocery store or Library. Prayerfully we face this flu season.
Please say a prayer for Justin. His transplant was last week for ald. He lost an older brother a little over a year ago to the same thing. His page is caringbridge.org/mi/justin
Wishing everyone a very Merry Christmas and Happy New Year. May God Bless You, thanks for checking on Luke, Love, Sheila. P.s, there are a couple of new pictures.

Monday, November 24, 2003 6:34 AM CST

Hello, we should get out of the hospital today. Luke got off of oxygen yesterday. The Drs. and nurses are amazed about how much medical stuff Luke knows, he explains how to take out his iv and if they do something the wrong way he tells them what they're doing wrong. He's done this routine too many times. Thanks for checking on Luke and thinking and praying for him it has meant alot to us. Please remember all the families who've lost children this year and are now facing the holidays and for all the children who are sick this holiday season. Happy Thanksgiving, we have alot to be thankful for. God Bless, Sheila.

Saturday, November 22, 2003 9:20 AM CST

Hello from the Children's Hospital in Kalamazoo, Luke is in need of oxygen and here we are....Again. Breathing treatments, Iv's, steroids etc. same old routine. Luke gets a little tired of everyone coming in and messing with him. He just asked to get out of bed so he can sit on the couch and look out the window. When we get to go home they are going to put him on pulmicourt inhaled in his nebulizer and possibly sigular to help prevent these lung issues. We are watching lots of Bob the builder, Wiggles, and Barney. But Luke keeps saying "I'm all better, let's go home" maybe in a couple days. Everyone is charmed with Luke, and thinks he's incredibly smart and funny. That's kind of the only nice thing about being here. Potty training mostly goes out the window when you're hooked up the the wall with a nose candula and iv pole. Oh well, there's always tomorrow. If I don't get a chance to say it, Happy Thanksgiving Everyone! God Bless and please say a prayer for Luke's lungs. Thanks, Sheila.

Thursday, October 30, 2003 9:14 AM CST

Hello, We have been out of the hospital for about two weeks but I haven't been able to update till now. Luke seems to be back to his old self and is back to school etc. Today they are having a party so when he gets off the bus he should be ready for a nap. We got his school pictures back and they turned out really cute, I will update pictures soon. He is doing really well with potty training, I'm very happy with his progress. Next week is his birthday(November 6), he will turn 4. He loves birthdays so it should be alot of fun and his dad's birthday is the next day so next week is birthday week. The next medical things that are scheduled is echo/ekg in December to check his leaking valve and rflp's also in December. I pray we avoid the Dr. until then. Have a happy fall, thanks for checking in and God Bless, Sheila.

Saturday, October 11, 2003 2:33 PM CDT

Hello and thanks for checking in on Luke. We are STILL in the hospital. Luke has not been feeling very well the last few days. He has been having to have oxygen and breathing treatments. He had not been eating anything and when the Dr. came in he said they would have to put in a NG tube if Luke didn't eat by Sunday, well that day Luke drank a can of Pedisure. He must understand alot more of what the Dr. says than I thought. I think he is slightly better today. He is getting tired of all the treatments and Drs etc. as am I. We are ready to go home. Please pray Luke's recovery speeds up. Thanks, Sheila.

Thursday, October 9, 2003 1:53 PM CDT

Hello from Kalamazoo, Michigan. Luke has pneumonia and we are at the children's hospital in Kalamazoo. He's getting the usual antibiotics, chest xray, breathing treatments and labs. It hasn't been too fun so far. He hasn't eaten very much and doesn't feel very well at all. It's a little depressing for him and me to be here. I was hoping to remain a medical part-timer but here we are on full time status. I would appreciate your prayers for Luke and that he makes a quick recovery. I'll update soon. Thanks and God-Bless, Sheila.

Wednesday, October 1, 2003 5:51 PM CDT

15 months post bmt,
Hello and thanks for checking on Luke. His test results came back stable. 56% donor cells and an enzyme of 18. Praise God. Minnesota is happy. They will recheck in December and then in June and if everything continues to be good, once a year. Lord willing we will not have to see a Dr. until then. Although Luke has been wheezing lately and has to have Albuteral in his neb about twice a day and I'm thinking about going to see his old pulmonalogist from before all the bmt stuff happened.
Luke loves school and is doing really well there. Potty training is coming along nicely and so is his speech. We still have to work on self help skills. Mostly I think he just likes me to do everything for him.
Please keep a boy named Danny in your prayers, visit his site at caringbridge.org/mi/dannyo Thanks, Sheila.

Thursday, September 18, 2003 9:18 AM CDT

Hello, I couldn't believe it has been since July since my last update. I guess we had a very busy summer. Alot more normal than last summer and no mask, hurray! Masks are terrible in 90 degree heat. Luke has started preschool three days a week, he rides the big yellow school bus(which he loves) during school he gets occupational, speech and physical therapy. There are two other little boys in his class so he gets alot of one on one. Today they are going to walk to the park to play, it's a beautiful fall(feels like summer) day in Michigan. Next week he gets his school picture taken so I will post that when I get it.
Tuesday I had to take him to the lab for a blood draw for engraftment and enzyme level, I should know results next week. His port was removed when we were in Minnesota so it was back to the old-fashioned poke but he did wonderfully and so did the girl drawing the blood. I feel pretty good that the results should be good. But if you want to say an
extra prayer.........
The local newspaper is doing an article on bone marrow transplants in order to raise awareness of the need to register for being a donor and they are going to interview Nick and take a picture of him with Luke. Nick is a little shy so I hope it turns out ok.
Please write in the guestbook, I'd love to hear from you and I will post Luke's results next week. God Bless, Sheila.

Tuesday, July 15, 2003 1:43 PM CDT

Hello, Sorry it's been so long since I've updated. Luke is doing really good. He loved the fireworks on the fouth of July. He thought they were wonderful. Playgroup is going really well and he enjoys the other children so much, he finally can be around other children. His speech therapy is going good and his speech is now testing in the normal range. He is also making some progress in potty training and will sometimes go without prompting but on his own initiative. I still don't feel totally compfortable taking him out unless he has a pull up on. I'm very grateful to God for Luke and for blessing us this past year. I have pictures being developed and I'll post them as soon as I can.
* Prayer Request* I know of a girl named Sarah who is about 15 who has battled leukemia since she was 2, had a transplant at Michigan 2 years ago and now has found out the cancer has returned. The family is very devasted. The donor is willing to do whatever if they go for 2nd transplant. I am trying to find out if she has a web site but in the meantime please pray for her.
Leave a note if you'd like, thanks for checking on Luke it means alot to us. God Bless, Sheila.

Friday, June 27, 2003 2:36 PM CDT

Greetings, Yesterday was Luke's one year anniversary for transplant. Wow, what a year it has been but more than worth it. Luke is doing wonderfully. Every Thursday he has play group and he has adjusted really well to being with other children. There are 4 others in his group. After play group he has speech therapy and on Friday he has speech therapy, he really likes his therapist and is having fun playing twice a week. The other nice thing is his teacher for play group will be his teacher next year in his PPI room (preprimary impaired) so he should be familiar and adjusted to her. I still feel a little strange about sending him to school all alone. He seems so little.
I am working on Potty training and have had some success. I am very hopeful. I am not expecting too much just taking it day by day.
We have been enjoying summer. Last night the kids went out and caught lightening bugs and we had a much needed downpour yesterday and I let them go out and play in the rain. Lots of fun. They are also addicted to garage sales, every week they look in the paper and circle all the hot sales around town. My house is beginning to look like I need to have a garage sale. "But mom it's only a quarter"
their famous line.
.Well, thanks for checking in on Luke and God Bless, Sheila.

Monday, June 16, 2003 6:52 PM CDT

We're home, Luke got out of the hospital on Wednesday and we saw Dr. Grewal Thursday morning and headed home right after. He is feeling much better. They have him on ceclor and an inhaler. The antibiotic is making his bottom very sore but otherwise he is back to his usual self. They(Minnesota) wanted us to take Luke to his pediatrition today(Monday) but when I called I was told he was on vacation for a month and when I stopped by his office I found out he is never coming back! So I asked my family Dr. if he would see Luke, they said yes just forward his records. It may take him awhile to read the two volume book on Luke but we have an appt. next Monday and I hope this works out. Weird about Luke's pediatrition.
Thursday Luke starts play group and speech therapy. I hope he stays well. The Docs have released him to start school this fall but no immunizations due to his lengthy csa. Thanks for checking in on Luke he is enjoying summer since it has finally gotten warm in Michigan. God Bless, Sheila.

Tuesday, June 10, 2003 10:16 PM CDT

Staying a little longer than we thought.........We took Luke in early Monday morning to get his port removed and have an MRI well after 3 hours we began to suspect something wasn't right and sure enough the anesthesioligist had tried repeatedly to place a tube that was too large for Luke and he aspirated. Thinking Luke's airway was the size of a normal three year old he used the tube that was recommended but Hurler kids have small airways(which we mentioned pre-op) and his airway is no larger than it was last year. I thought they were suppose to know everything about Hurlers here? So Luke had to be admitted to 5b. He's getting chest x-rays (is he glowing yet?) and a couple of different Iv antibiotics and breathing treatments. They also had trouble getting the Iv in so it's in his foot and he cannot walk. My hope is he will be discharged tomorrow and we'll head home on Thursday but Eric feels they will keep him one more day. Luke's had a rough couple of days.
The good news is enzyme levels have gone up to 19 from 16 and his IQ test came out really good I think he tested between 37-39 months in all areas! God has blessed Luke. We are grateful. Thanks for checking in and leave a message if you want. God Bless, Sheila.

Sunday, June 8, 2003 2:33 PM CDT

Hello from rainy Minneapolis, the weather has been quite rainy and cool for most of the weekend, occasionally the sun will peak out for a bit. We have spent most of the weekend inside partly due to the weather and mostly due to Nick being sick. Saturday late afternoon Nick turned pale and got dark circles under his eyes and said he felt "strange" I put him to bed and took his temp and it was 102.9. So I went on a hunt for tylenol, Presley's mom gave me Advil but Nick did not like it so Taylor's mom gave me some tylenol. He is much better today but I am not letting him out of the room due to all the immune compromised kids here. Sorry Nick. Tomorrow if he remains fever free I'll let him go to finding Nemo a scheduled field trip for the kids here at the House. I think it must have been something he ate at dinner.
Luke is doing wonderfully.and tolerated running(and waiting) to all the appts. this week really well. When we see Dr. Grewal on Tuesday I'm going to try to cut back to only the essential appts. which would be ortho and bmt Dr. because if Luke would happen to have any type of problem with just general areas such as heart, ears, eyes etc. I'd need to seek treatment at home anyway, it just would not be practical to get glasses for Luke in Minnesota. Tomorrow we go in for MRI and removal of his port. It will seem strange for Luke not to have something in his chest after a year. I feel kind of funny about it, I don't know why. Eric just got back here this afternoon so I'll go for a walk and take a break from the kids for a little bit. We are planning on driving home on Tuesday after Luke's Drs. appointment. I'll update tomorrow after surgery. Say a little prayer for Luke that all goes well with anesthesia etc. Thanks for checking. God Bless, Sheila.

Thursday, June 5, 2003 11:13 AM CDT

Greetings,
Yesterday I made a special trip to the hospital out-patient radiology dept. so Luke could have a special x-ray of his hand so they could do a "bone age" so he sat on my lap and did a good job. But the point of this x-ray was so the endocrinologist could see it and determine if his bone age matches his chronological age. So this morning I took him to see the endocrinologist and we waited a looooooooong time and then they called Luke's name took weight and height and we waited a loooooooooong time saw a fellow who took medical history and did a quick exam and then we waited again and they wanted us to come back on a Monday -Thursday to do blood test and I said too bad we're going back to Michigan and we waited a loooooooooong time and the endocrinologist came in to say at age 5 they do the hand x-ray and I said we did that yesterday, I guess for no reason she didn't even know they had taken it. So I ask why am I here waiting two hours? So they can check his growth hormone level(which we didn't do because they only do that monday-thursday after fasting and take an x-ray no one looked at) Basically, she told me go see an endochrinologist in Michigan and they can give Luke growth hormones to possibly make him taller and the side effects of the growth hormone is if you have any curviture of the back it will get worse and it weakens the bones. Luke has a significant curve in his back and weak bones is a characteristic of Hurlers. I'm very not happy today. Does anyone know more about growth hormone?
The orthopaedic surgeon said Luke looks pretty good and will need hip surgery done in a couple of years and possibly knee but he didn't think back. Luke's curve is 36 degrees and they don't do surgery until 70 degrees.
Later today we go over to have his eyes checked. The kids are making smoothies and going bowling with the activities director and other kids from the house so they are having a good time. I'll update some more later, Take Care, Sheila.

Monday, June 2, 2003 1:49 PM CDT

Hello from Minneapolis, I just updated a whole page of information about Luke and when I went to correct some spelling it erased the whole thing! So now I'll just give the highlights and I won't try and correct anything so if there are some misspelled words or anything please overlook it. Luke is doing good. His rflp's were 59% donor cells this is very good, we praise God for that result. Enzyme was drawn today and won't be back for a little while. The other kids are now at an activity and I'm updating, we have one more appointment today at 3:00.
There is one new picture posted. Please leave a message and I'll update tomorrow. God Bless, Sheila.

Monday, June 2, 2003 1:48 PM CDT

Saturday, May 17, 2003 9:56 AM CDT

Greetings, Luke is feeling much better and is back to his usual self. We received our schedule for going to Minneapolis yesterday and I must say the week is quite busy. But I am anxious to hear what the hand and bone Drs. have to say about Luke as this area seems to be the most affected by the Hurlers. I'm going to take him in to our local clinic on Monday to have his rflp's drawn again so the result will be in by the time we see Dr. Grewal. If they are good they will take his port out on Monday June 9th, if not they will leave the port in and redraw. I'm thinking positively. Luke has been blessed.
We have two more weeks of home therapy for Luke. I will visit the preprimary-impaired class they want him to start in the fall on Wednesday. For the summer he will do a preschool "chatterbox" class one hour per week and speech therapy through Easter seals one hour a week. He has had really good home therapy and we are thrilled with his progress. We'll see how he does on his developmental test when we get to Minnesota.
Thanks for checking in on Luke and sign the guestbook we'd love to hear from you. God Bless, Sheila

Monday, May 5, 2003 5:03 PM CDT

wbc=6
anc=4.8
rbc=12.4

Luke had labs today because he hasn't been feeling well lately and when I took him to the Dr. they thought he might have pneumonia. Thankfully, the chest x-ray was negative but his pulse-ox was 85. They gave him two breathing treatments and a dose of steroids and a shot of antibiotic.
I have to go back tomorrow to make sure he's better. I'm so glad we weren't admitted into the hospital.
Minnesota called and we're scheduled to go back the first week of June for all of our yearly check-ups (I heard 18 appointments in a week!). We will stay an extra couple of days because they are going to remove his port on the following Monday and do an mri and tubes in his ears if needed. They will draw his rflp's again the week before we go so we will have the results when we get there and before they remove his port.
The school system has a summer play group they want Luke to participate in so I have to see if they (Minnesota) will release Luke to be around other kids. During the play group he will see a speech and occupational therapist so he won't have all summer without anything.
I want to say a special hello to Ruth. Hope to talk to you soon.
And I'm so very sorry to say a good friend and very nice young man who we met during Luke's transplant lost his battle with Leukemia recently. We will say lots of prayers for his family. His web page is caringbride.com/ia/sam
New pictures soon, sign the guestbook and say hello, Love, Sheila.

Wednesday, April 16, 2003 5:56 PM CDT

+ 10 months
Luke's rflp's came back at 57.4% donor cells! This is really great news and we feel very blessed. We do not take good news from Minnesota for granted! They did not check his enzyme level but it was 16 last time they checked and the donor cells were less at that time. They aren't exactly sure what the minimum amount of enzyme a person needs to keep symptoms of Hurlers at bay but 16 is enough. Normal would be much higher but we did start out at 0 so hurray for enzyme. We will return to Minnesota in the middle of June for a bunch of appointments. He may have his port removed also. They didn't say when they will check the rflp's again but I think they are feeling Luke is stable. He has been off of csa for almost two months. Right now he isn't taking any meds that feels wonderful. He will continue his therapies thru the summer and start school in the fall. How weird will that be? Thanks to everyone for checking on Luke and Keeping him in your prayers. Happy Easter and I'll try to post new pictures soon. Love, Sheila.

Saturday, April 5, 2003 12:54 AM CST

Hello, Luke is doing fine. He has his rflp's drawn again on Monday, it'll take about a week to get the results but we are hopeful they will be the same or better. Please keep him in your prayers. We know he is in God's hands and so is this transplant. He has been off of csa for about a month or so and will start one on one therapy next week at the local hospital instead of only getting in home visits. I hope the therapy will increase and continue through the summer. He has had excellent in home therapy so far and has made alot of improvements in speech especially. The biggest problem for Luke right now is he is a very, very fussy eater and only eats about 4-5 things. This has been a little frustrating but we work on it each day.
I think his eyes are a little clearer since the transplant and he continues to learn new things. But his body is a little more crooked and his hands tend to curl. Hopefully these things will be improved with future surgeries. But his handicaps don't seem to slow him down much. He still is not very tall but he makes up for height in personality! It does save on buying new clothes and shoes.
To all of our friends who are in the fire now we pray for you always, Love, Sheila.

Tuesday, March 18, 2003 6:43 PM CST

Something new?
The docs have changed their minds again, and we will not have to go to Minnesota in April but we will go to our local clinic and send Luke's blood to Minnesota to have rflp's done again. We are scheduled for our year check-up the third week of June, so they are proceeding as if everything is going to work out for Luke and this transplant. We are also going on with life because what else can you do? We remain hopeful and optimistic that donor cells will hang around it's been almost 9 months since Luke's transplant. They have taken Luke off all of his medications so I think this next engraftment test will be a huge sign as to how Nick's cells will do in Luke's body without any immune suppressant. We have not taken Luke anywhere(in public) yet but hope to take him to church on Easter Sunday. Luke loves Church and everyone can't wait to see him. I pray it works out.
Otherwise, Luke continues to do well. His therapies are going good. We have started potty training with some success. He loves to sing and dance. He would have me read him books all day long. These are precious days with him and I'm very thankful to the Lord for giving them to me.
Good news, Aaron(a little boy who also has hurler syndrome) was just transplanted is 100% donor, that is wonderful news.
Please pray for Presley who was transplanted in October and is still in the hospital undergoing continuous and very invasive treatments. Pray for strength and healing. Her web address is caringbridge.com/ky/presleynash
Thank You and God Bless, Sheila.

Thursday, March 6, 2003 9:23 AM CST

A new plan.........Dr. Grewal called and now they have decided to do nothing. There are 5 Hurler children with mixed marrow and all are doing well. It is their hope that Luke keeps the donor cells he has and continues to do well.
They will recheck him at the end of the month. If his donor cells get to 25 or 20% they may revisit the idea of doing a boost, otherwise donor cells will have to get 10% or lower which would mean another transplant GOD FORBID!! They are scheduling us a return visit to Minneapolis at the end of April/beginning of May for all of our one year anniversary visits even though it will be a couple of months early. We are very hopeful for Luke and this transplant. We have been blessed with a fairly healthy and active three year old these last 4-5 months and for that we are very grateful. Please keep him in your prayers and all the other Hurler kids who are going through it right now. God Bless, Sheila.

Saturday, March 1, 2003 1:06 PM CST

Hello, Luke's Dr. called on Wednesday and no decision has been made yet, but he restarted the csa taper so Luke only has 1 week left to take his immune suppressant drugs. The bmt Docs were meeting on Friday and Dr. Grewal will call me prabably this week with some kind of news. Meanwhile Luke continues to do well. His biggest problem is he doesn't want to eat any new foods and he eats the same 5-6 things EVERYDAY if anyone has any suggestions on how to get this kid to eat more please let me know.
I had taken the other two children out of school because we thought we were going to Minneapolis for 3 months but now that we don't know I'll send them back on Monday. It did work out well though because their school had a severe problem with the flu virus and I'm glad they missed it.
There are several Hurler kids in the hospital right now that could use your prayers, Taylor(fevers), Jacob, Isobel, Carter and Aaron(just had his transplant). Please remember Luke also that the Drs. would make really good decisions about what if anything they should do. God Bless, Sheila.

Saturday, February 22, 2003 12:12 AM CST

+8 months, we are on hold, a strange thing happened donor cells went up instead of down. They had rechecked the rflp's and the enzyme level and counted t-cells, donor cell count was 44%, enzyme was 16 (up from 12), and t-cells were 38% donor. Dr. Grewal is going to have a conference with the other transplant Docs and call me tuesday night with the plan whether to go ahead with the boost or take Luke off of csa completely and recheck the donor cells in about 2 weeks. I have a feeling they will do the 2nd option. Keep your prayers coming, it feels like they are being heard. God Bless, Sheila.

Monday, February 17, 2003 7:10 PM CST

Hello and thanks for checking in on Luke. Luke is doing wonderfully, he feels good and is growing and learning each day. His speech is great. He talks in sentences and is easily understood. He rarely if ever signs because he doesn't have too. He loves his therapies and plays non-stop with his brother and sister. And best of all he sleeps all night! After all this good news I can't believe I have anything bad to say but they want us back in Minnesota possibly/prabably next monday. I can honestly say we are a little hesitant to take Luke back. We can wait and hope the donor cells stay but if they do not we are back to square one and facing another transplant. But with how far Luke has come it is very hard to put him back in the hospital for more treatment. Having Hurlers is not any fun! We are praying God will direct the Drs. to make the very best decisions for Luke and that we will also do what is best for him. Please keep us in your prayers as we have some very difficult decisions to make. May God Bless You! Sheila.

Friday, February 7, 2003 11:06 AM CST

Back to Minneapolis, the tests are back and there is cause for some concern. Luke's last engraftment was 33% donor cells and enzyme of 12. Although this is enough to hold Hurlers at bay there is no way of knowing if donor cells will hang on. Dr. Grewal wants us back in Minneapolis soon to give Luke a boost. Luke will spend 1 week on the bmt unit and receive a drug that will surpress his T-cells. Luckily when they did the harvest of Nick's bone marrow they had too much and froze the extra. This marrow will be thawed and infused into Luke's port. Luke will also go back on csa for a time. We are hopeful and prayerful that this will boost the donor cells and this transplant will be saved. Say a little prayer for Luke. Thanks, Sheila.

Wednesday, January 29, 2003 at 12:58 PM (CST)

Greetings, We are leaving for home this afternoon. I met with Dr. Grewal this morning, he strongly feels we should infuse some of Nick's peripheal blood into Luke's port. They rechecked Luke's engraftment on Monday, it will take 2 weeks for the results if they are lower we will come immediatly back to Minneapolis to start the infusion. If the engraftment shows same or more donor cells we will wait. If we have to come back we will stay in Minneapolis for about 3-4 months. I will prabobly keep all the children with me like I did last time. I will know more after I talk again to Dr. Grewal in about 2 weeks. Otherwise Luke is doing great and for that I Praise God. Blessings, Sheila.

Monday, January 27, 2003 at 03:54 PM (CST)

Hello, We have had a busy day. First we went to clinic at 8:00 and had labs done. Pat, our favorite nurse, drew his blood and then we saw Dr. Grewal. Luke has lost some donor cells he is now about 45% donor. They are talking about infusing some of Nick's peripheral blood cells into Luke to give the donor cells some advantage. They would not do this until donor cells get to 30% because they are still hopeful he will stablize and there is a risk of developing
graft vs. host disease. So we will go home prabobly on Wednesday and they will monthly do RFLP's to monitor the engraftment. I am very much at Peace with all of this and I know God will see us through anything and everything. In all other ways Luke is doing wonderfully and we couldn't feel anymore blessed.
We also saw the hand surgeon and Luke is getting new splints made in the morning. When we come back this summer they will do a carpel tunnel test(I heard it's just awful). Keeping the splints on Luke will be the real challange. We also have neurophysch tomorrow (YUCK) that is long and torturous. We see Dr. Grewal again on Wednesday morning.
They have been having meals here at the House everynight which is wonderful. Tonight is tacos. Yummy!
God Blessings, Sheila and Luke.

Sunday, January 26, 2003 at 01:43 PM (CST)

Hello from Minneapolis, Luke and I flew here this morning. It was a very nice flight and Luke did awesome keeping his mask on. We are now at the Ronald McDonald House and will see Dr. Grewal first thing in the morning. Right when we came in to the RMH we. saw Mary(Sam's mom) and Aj's Dad and met Aaron another Hurler Cutie who goes in for transplant tomorrow. We will keep him in our prayers. We are anxious to see Taylor and Aj in person. I'll try and write more tomorrow after I talk to the Dr. God Bless, Sheila.

Sunday, January 26, 2003 at 01:33 PM (CST)

Wednesday, January 15, 2003 at 06:50 PM (CST)

Hello, They are rechecking Luke's engraftment again, today when I took him in for labs they also drew for the rflp test to send to Minnesota. We are hopeful that Luke will still be at least 50%. I should hear next week. The taper of the csa is going well, he is already at .2 and down to .1 by friday. I will be very happy to put that drug behind us. We(Luke and me) will go to Minneapolis leaving on the 26th of this month. We will see Dr. Grewal and the hand surgeon as Luke's hands are beginning to curve and do an IQ test. It should be a short visit. I am hoping the weather will be ok and that we get a room at the Ronald McDonald House, it sounds like they are very busy.
Luke is doing wonderfully. He feels really good but is a bit bored I think because of the isolation. We go no where and I am very much looking forward to spring and hopefully he'll be able to go out more and experience more things. Please keep him in your prayers. We have been very blessed so far and for that I am extremely grateful. God Bless, Sheila.

Friday, December 27, 2002 at 10:31 AM (CST)

Happy New Year, Luke's engraftment was checked again and his donor cells remain unchanged so they have started the taper of his csa(immune suppressant drug). He should be completely done the first week of February. They will recheck his engraftment on January 13th to see what it does without the csa. We are hopeful things will remain the same with about 50% donor cells. We are going to Minneapolis the last week of January for his 6 month check up. It's really 7 months but Dr. Grewal is going back to India so Luke's return was pushed back a little so he could see his attending physician.
Please say a prayer for little Taylor McClung, she's having her 2nd transplant and is not feeling well. Her site is caringbridge.com/mn/taylormcclung.
Hope everyone had a Merry Christmas and Happy New Year.
God Bless, Sheila.

Tuesday, December 03, 2002 at 09:20 AM (CST)

Hello, Luke decided to be sick again. Mostly asthma like symptoms but a small fever and a little difficulty breathing put us in the hospital overnight and on steriods. All these extra meds and breathing treatments made his blood pressure way high so we're back on blood pressure medicine. The good news is he takes his meds very well and is feeling alot better. We have yet to receive our return date to Minnesota, hopefully, we will know soon and for how long we're staying. I understand the RMH is quite busy right now, please keep all the children there in your prayers. Please especially remember our friends, Morgan, Taylor, and Alex all of whom are in the hospital right now.
Here are their web sites if you'd like to leave them an encouraging note: caringbridge.com/me/morgan, caringbridge.com/mn/taylormcclung, caringbridge.com/la/alexeddy. Thank You. God Bless, Sheila. P.s. There are some new pictures. And I can't forget little AJ Toivola his site is Caringbridge.com/mn/ajtoivola.

Monday, November 25, 2002 at 11:40 AM (CST)

Greetings All, Thanks for stopping by Luke's web page, please sign the guestbook if you'd like, we love to hear from all of you. We are going to cancel our AOL service so no more e-mail(sad face)but we are rarely on the computer and will go to the library to keep updated on all our friends and to update Luke's page. Please send snail mail or call anytime or post a note on Luke's guestbook page if you'd like to get a message to us.
There are new pictures!!!,however, my brother pointed out to me Luke has his mask on in every one of them. I will put a "good" picture on soon so you can see what he looks like exactly. If you are the parent of a Hurler baby just put your childs face in for Luke's he looks just like all the other Hurler babies.
Luke has a little cough, otherwise, is feeling fine. We take him out NEVER!!! Poor thing must be a little stir crazy. Therapy comes here, Grandma comes here, once in awhile we ride in the van and once a week we get labs done. I think going to Minneapolis in January will be a nice change of scenery for Luke. We are officially 5 months post transplant tomorrow. We remain hopeful and prayerful that donor cells will stay.
HAPPY THANKSGIVING EVERYBODY!!!!Hope it's happy and family filled. We feel blessed this year. Love, Sheila.

Friday, November 22, 2002 at 11:42 AM (CST)

Hello, Luke's engraftment test came back about the same, 50% donor. This is good news, however, they are wondering what will happen when they stop the csa(immune surpressant) the Drs are thinking about having Luke come to Minneapolis for an extended period while they are tapering the drug so they can monitor the engraftment closely. They are going to let me know. If the donor cells start to decrease they may give a boost of Nick's lymphocytes to Luke to help keep the engraftment. All of this is a big maybe and my prayer is none of it will be necessary and Luke will keep Nick's 50% and live happily ever after. I'll keep you posted.
New pictures should be posted soon. Luke has changed alot since summer. He is especially hairy from the csa. We call him pooh bear. We hope you have lots to be thankful for this Thanksgiving, I know we do. Thanks to all of you for keeping up on Luke and keeping him in your prayers. God Bless, Sheila.

Saturday, November 16, 2002 at 01:35 PM (CST)

Hello and welcome to Luke's update, last Monday night or should I say real early on Tuesday morning we had to take Mr. Luke into the emergency room because of fever. I could tell he wasn't quite himself when I put him to bed but at about 2 am he woke up asking for a drink and I could tell he was hot. Because Luke has a port a cath and because his immune system is being surpressed a fever means seeking medical attention immediatley(of course, he would never get a fever at a resonable hour). So a quick call for Grandpa to come over a stay with the other kids and we were off to the local emergency room. They did cultures and he had to have a poke which he hasn't had in quite a while but they have to be sure it isn't his line that is infectious. They also did a chest x-ray(I've stopped counting how many of those he's had in his short life), and IV antibiotics. Then we got to go home and wait until cultures came back 24 hours later. They all came back negative which means we didn't have to be hospitalized and everything is back to "normal".
Tuesday night we went in for labs and they took a sample to recheck his rflp. Which is how much of his marrow is donor. We should know this week. Please keep Luke in your prayers that his engraftment will stay stable. I will post results as soon as I know. They are not rechecking enzyme level until we go back to Minnesota in January. Last time they checked it was 22. When we started his enzyme was a big 0.
In all other areas Luke is doing great. He started speech therapy on Thursday. He tested at 19-35 months in all areas. We are hopeful he will continue to progress. Having an older brother and sister has been very helpful in his progress. They often read and play and fight with him. We feel blessed to have him with us and that's the big thing we're thankful for this Thanksgiving. God Bless, Sheila.

Sunday, November 10, 2002 at 09:04 PM (CST)

Hello, Luke's birthday was a big hit. First when he went to the hospital for his blood draws they were waiting with cake and balloons and presents. Grandma was there and the nurses and Grandma's friends all sang the birthday song(which Luke loves to hear). Then we had our own birthday party when the kids got home from school. Luke did not eat any of his birthday cake though because he is a very very picky eater but maybe next year. Grandpa(Eric's Dad) stopped over with more presents. Luke quickly became used to receiving gifts and when I had to go to Nick and Natalie's conferences later that evening he told me to bring him back presents! The congregation at our church recorded singing Happy Birthday on tape for Luke and we listen to it over and over. As soon as it ends he says rewind please, one more time, he just loves that song.
Also, the next day is Daddy's birthday where we did presents, song etc. all over again so we had lots of birthday last week.
One nice thing that happened was at his check-up I found out Luke has grown 2 inches from his last birthday. I really believed he had not grown at all so that made my day to hear that he did indead grow some. His head remains on the very large size but they do not seem all that concerned about it. Everything else seems to be doing fine. We are very grateful and blessed.
Write more later, Luke's calling God bless, Sheila.

Tuesday, November 05, 2002 at 12:47 PM (CST)

Day +132
wbc= 5.1
anc=3.2
weight 14.3 kg
Greetings, We took Luke to the U of Michigan yesterday and he started to get really scared and cry when we pulled into the parking ramp and I thought poor baby, these kids never get a break from all this medical stuff. However, the appt. went really well. We saw a BMT Dr. and he was very impressed with Luke and the outcome of his transplant so far. Luke relaxed alot and ended up being a real character. He had the Dr. laughing and us too. We will go there every 2-3 weeks for check-ups and possibly some labs also. Otherwise we will continue doing labs locally on the off weeks.
The other big news is tomorrow is Luke's 3rd birthday!!! What a huge deal that is going to be. Natalie and I went and got lots and lots of decorations and even though we can't have a kid party we are going to do some real celebrating. We've been teaching Luke to say 3 and he does and then he says 2, 5, 10 like he's counting so I don't think he gets it yet. Oh well, cake and 3 candles tomorrow I can't wait.
I hope all of you are doing well and thanks for checking in on Luke, please sign the guestbook we'd love to hear from you, God Bless, Sheila.

Tuesday, October 29, 2002 at 07:30 PM (CST)

Greetings, Luke is doing really good. His labs have been holding steady and his csa level was a little high but they adjusted his dose and was ok last week. Tomorrow we go for labs and we are having the therapist come over in the afternoon. Luke is really behind on therapies so I'm anxious to get them started. On Monday the 4th we have to drive down to the University of Michigan to meet the bmt Dr's there. If Luke gets a fever or has any type of problem that requires hospitalization we will go there for treatment and we want them to be familiar with Luke.
Luke continues to take his medicine really well and will even ask for it. I never thought that would happen. We have also been working with the potty chair. Luke has alot of fun sitting on it and moving it around. He even accidentially used it once. We have all winter with nothing to do but play with the potty chair. Luke has also taken to praying before we eat which is really cute but he likes to stop and pray several times during the meal and everyone must stop eating and fold their hands and pray. If someone doesn't Luke calls their name and will not start until everyone is ready. Sometimes we pray 5-6 times per meal. Nick and Natalie can get a little tired of it but we're making up for all the times we forgot to give thanks.
We still are not in our house yet. It's still under construction but we hope to be in by the holidays. It'll be nice when we finally get home. I won't take that for granted again.
Please pray for a boy Alex who had his transplant one day before Luke. He has Fanconi Anemia and is having a rough time of it. They recently placed him on the respirator and might have to start dialysis. I know his family could use strength and encouragement. Thanks and God Bless, Sheila.

Friday, October 18, 2002 at 07:56 PM (CDT)

Hello, I had to write and brag about Luke a little bit. When we first left the hospital, after transplant, Luke had to have an NJ tube because he was still feeling a little sick and could not tolerate any meds by mouth, well, I accidently pulled it out a few days before we came back to Michigan and rather than put Luke through the ordeal of getting a new tube we decided to try the oral meds again.
He takes them so good. When I say time for medicine he lays on his back and opens his mouth so obediantly I almost cry. For all of you who know how awful csa taste you can really appreciate what a good job Luke is doing. I always give him something strong to wash the taste out with(like coke) normally I would never give pop to a toddler but these are special circumstances. Next we all give him lots of claps and applause, he gets up clapping for himself. We do this routine three times a day but it is very cute.
We haven't started therapy yet. They want to come to our house to evaluate Luke but the therapist has a cold and is keeping away. I appreciate her thoughtfullness. We are hoping for next week sometime. I really want him to keep up with all the progress he made while in Minnesota.
We are also wanting to have a praise celebration at our church just to thank God for how He has blessed Luke during this whole thing. But Luke can't go to church so I'm not sure what we'll exactly plan. I'll let you know.
We want to say a special hello to our friends still in Minnesota, Taylor and Jen, Morgan and her family, AJ and family, Alex and Sharon, and Presley and her family. We think of you guys all the time and miss you all and please keep in touch. God Bless, Sheila.

Thursday, October 17, 2002 at 06:26 PM (CDT)

Greetings,
We took Luke to his first visit with the pediatrition on Wednesday. It went alot better than I had expected. They had us go to their cancer clinic to have Luke's labs drawn from his port because the nurses there are familiar with that procedure. We go at a time when they do not have any other patients I am very grateful for that given Luke's compromised immune system. After the lab draws we went back to the pediatritions office through a back door so Luke wouldn't have to be in a waiting room full of sick kids. I thought they had planned very well for Luke. We will go to the University of Michigan for a visit with the BMT Dr. there so he will be familiar with Luke in case we have a problem and would need to be hospitalized but we won't have to go weekly as we first thought. I'm still working on therapies for Luke that is going a little more slowly but I think we will have some in home therapy until he's off form csa and his immune system gets back to normal.
Eric is still working on our house and we are in temporary housing. I hope to be "home" by Christmas. Well, Luke wants me I better go, write more later. Love, Sheila.

Friday, October 11, 2002 at 07:44 PM (CDT)

Hello from Michigan! We are home!!!! Sorry it took me so long to update but we've had a very busy week. Luke's engraftment test came out exactly the same as before which is good news, he is still 50/50. I haven't heard what his enzyme level is but he has some if he has donor cells which he does (Praise God)!. We saw the BMT Dr. on Tuesday and as soon as we left the clinic we went to the RMH to clean and pack which is alot of work. Right after the van was packed we turned our keys in and hit the road. Eric was tired of driving through Chicago so we went through Northern Wisconsin, Upper Pennisula, and down lower Michigan before we finally made it to Marshall on Thursday afternoon. Now we are busy getting settled in and making Dr. and therapy appointments for Luke. Nick and Natalie will start school on Monday. We might even have a some normal routines before long. We are very grateful for how God has blessed us and Luke through this whole transplant.
There are some rules to visiting Luke so I will post them:
1. Don't visit if you have or have been exposed to the chicken pox or shingles.
2.Don't bring non-toilet trained babies to visit.
3. If you are not or recently have not been feeling well please don't visit.
4. If you have had a recent immunization Luke must avoid you.
5. Small children who go to daycare should not visit Luke.
6. If you do visit please wash your hands before touching
Luke or his things.
7. Please remove your shoes before coming in our home.
Luke must also avoid crowds, pets, sick people, cut wood, construction sites, yard work, and dental work.
We will see a Dr. here for Labs and check-ups every week
and will go to the University of Michigan every so often to see a BMT Dr. there and then in January we will go back to Minneapolis for our 6 month check-up. They are going to check Luke's engraftment once per month until we go back in January. Please keep Luke in your prayers that things continue to go well and that he holds donor cells and avoids sickness and infection. Thanks and God Bless, Sheila.

Saturday, October 05, 2002 at 03:52 PM (CDT)

Day +101
Hello, today has been an exciting day. First thing this morning Luke's NJ tube got caught on the buckle of the bibs I was wearing and came out. I am going to try to give his meds orally and see how he does before I take him in to have it replaced. They are going to change to an NG tube instead if it does have to be put back in because that kind of tube is alot easier to place. He has taken two doses of CSA(a horrible tasting med) and no problems. I hope this works out but we have 5 more months to go before meds stop.
The other thing that was alot better was Eric and the other kids got to go to the twins playoff game. The owner of the team called the RMH and offered tickets right behind the dugout so when asked if they wanted to go of course the kids said YES! and they won BIG! 11-2. We are now big Minnesota fans.
We see Luke's Dr. on Tuesday morning and should hopefully know the engraftment test results. If they are good we will leave Wednesday morning. Grow Cells Grow! Thanks for all your prayers they've been working. Please keep the children who stay at this house in your prayers, many are struggling. Peace, Sheila.

Wednesday, October 02, 2002 at 07:34 PM (CDT)

Day +98
Greetings, Yesterday Eric got here just in time to go to the hospital with me and Luke for his surgery. After a long delay they finally took him into the OR at about 1:15. Luke did an excellent job and was very content considering he had not eaten since the day before. I think he did better than his parents who were getting a little impatient. But all is well that ends well and they used the port today to draw his 100 day labs and it worked beautifully. As soon as the results come back( in about 1 week) we hope to head back home to Michigan.

Monday, September 30, 2002 at 10:05 PM (CDT)

Hello, They are going to do Luke's surgery Tuesday morning. He cannot eat anything after midnight so I'm keeping him up until then and am going to feed him late. He will not be happy in the morning because the surgery isn't scheduled until 11 am that's a long time for him to go without anything to eat or drink. I'm preparing myself for a difficult day. The good thing is Eric will be here first thing in the morning to help me with all the kids. I'm very glad about that.`They are going to put a port in so that it's under the skin and less prone to infection. I think it will be alot better and there won't be any dressing changes when we get home. Hopefully we'll be home in 2 weeks. We'll wait and see what happens. Keep Luke in your prayers this week, that he won't get an infection, that the enzyme and engraftment tests are good, that his surgery goes well. Thanks again, God Bless, Sheila.

Monday, September 30, 2002 at 12:30 PM (CDT)

Day +96
Greetings from Minneapolis, we have an official delay. When we went to clinic this morning they could not get anything out of Luke's line, we tried jumping him up and down, laying down on the table, everything but nothing worked. So we went for a chest x-ray which showed the line is pulled out and Luke has to go for surgery prabobly on Wednesday. They might put in a port which is hidden under the skin instead of a central line that hangs out of the chest. We will do the labs we were suppose to do today on Thursday. The results will take about a week and then we could come home if everything is good. God has a plan and this delay could be for a very good reason. We're still very hopeful and feel very blessed. Thanks everyone for checking on Luke. God Bless, Sheila.

Wednesday, September 25, 2002 at 01:23 PM (CDT)

Hello All, Luke is taking his nap as usual today and the kids are at school so I'm spending a little time on the computer before I go back on duty. Luke seems to be feeling still very good. He had therapy today and the therapist seem very pleased with his progress as are we. Luke came to Minneapolis with a vocabulary of about 50 words and he now talks in sentences with a vocabulary of many words. Physically he has limitations due to the bone damage and his lack of height but he does get around well inspite of this. He will at some point require orthopedic surgery how many and what kind I don't know yet. We are still chanting Grow Cells Grow and look to God to perserve Nick's precious cells in Luke's body.
I've been cleaning and packing as we are anticipating going home hopefully at the end of next week. Luke is doing so well people can't believe we're still here. We are truly blessed. The RMH is at full capacity and many are staying in hotels waiting for a room. It is sad all the seriously ill children.
We miss everyone and thank you for all your prayers and support. God Bless, Sheila.

Tuesday, September 24, 2002 at 02:17 PM (CDT)

Hello, My children keep me very busy. Today the teacher from Nick and Natalie's classroom came up to see if they were in our room because they did not come in from recess.
In the times we live in this is just not what you want to hear, they were hiding in the teachers closet. Right now I'm contemplating a just punishment. The poor teacher was running around all of RMH trying to locate my little darlings. And Mr. Luke decided he did not need a nap. I laid him down in his crib as usual and put in a music video as usual but he was not asleep at the end of the video as he usually is. Instead he was standing up saying momma and out meaning out of his crib. So out he came and we played for awhile and then I found him under the kitchen table fast asleep. I am just a little tired today. Medically everything is the same, the same meds, the same therapies, the same Dr. visits,but Luke is doing very well and that can stay the same. Hopefully we'll be back in Michigan in about 2 weeks. Much love to everyone and for those who are struggling may the Lord's peace and healing find you today. God Bless, Sheila.

Monday, September 23, 2002 at 12:21 PM (CDT)

Day +89
Greetings,
We saw Luke's Dr. today and he thought that next Monday they would recheck the engraftment and enzyme levels. The results should be back on Friday October 4. If everything looks good (the same or better results) we will then leave to come home. If things look worse (Nick's cells decreasing) they will go to plan B which is several different complicated options that I won't bore you with until necessary. Luke is in God's hands and this transplant is in God's hands and so we pray. Eric and I are very hopeful as are the Drs. We welcome any prayer for cells to keep growing and setting up home in Luke's body. Otherwise, Luke is still doing excellent and continues to grow and learn new things each day. His eating is almost back to where it was before transplant, in fact, he's very heavy!
The air has turned chilly in Minneapolis but I have a plastic rain cover that keeps him warm and the wind out so we can still walk to clinic and therapies. We love and miss you all and hope to see everyone at home in person very soon. Love, Sheila and the kids.

Saturday, September 21, 2002 at 07:00 PM (CDT)

Greetings from Minneapolis, There is a definate chill in the air and I think fall has arrived but we welcome it because Luke has to wear his mask whenever we're out and it can be very warm. Although we only went out briefly today I think tomorrow we will spend some time outdoors letting the kids release some of their energy. I've been running around like crazy trying to keep up with Luke, needless to say I'm not complaining. How wonderful to have a very active 2 almost 3 year old. I'm very blessed and a little tired. I now have him happily in the tub with his sister hoping it will relax him a bit. I can't wait to get home so Daddy can have a turn. So basically Luke is doing awesome and we'll keep you updated as to any news or changes. God has been good to us and we are truly thankful. Give your babies a hug from us and know you are blessed. Drop us a line if you'd like we'd love to hear from you. Hugs, Sheila.

Friday, September 20, 2002 at 10:11 AM (CDT)

Hello, We are busy packing and sorting things to either stay here or go home with us. Many things are being donated to the RMH and a few favorite and necessary things will go back to Michigan. There seems to be alot of colds going around at the RMH and I've had to be extra careful with Luke and will try to keep him in our room as much as possible. We do alot of hand washing and we prayerfully hope that Luke stays healthy. On Monday we see Luke's primary Dr. and he should be able to tell us his exact release date but I'm assuming it will be October 4,day 100.
Eric and I are really pushing to get out of here.
Some of Luke's favorite things to do are: take a bath, watch some kids videos, go to therapy, say "watch this" and then do a little trick, race Nick and Natalie in the hall, go for walks, have Ruth come and visit, talk to daddy on the phone, play with blocks and trucks, so he really is acting like a healthy, happy almost three year old. It is so wonderful to see.
I had some pictures developed yesterday and I really could see a huge difference between now and when he first got out of the hospital. He looks and acts so much better. God has really blessed him. I'll try and get some new pictures posted soon. Take care and have a nice weekend, sign the guestbook if you'd like we love reading messages. Blessings, Sheila.

Wednesday, September 18, 2002 at 08:25 AM (CDT)

Greetings from Minneapolis,
Eric left yesterday evening and will return in two weeks to hopefully be bringing us home. I feel so ready to go home. I miss my family and friends. I've been trying to pack and donate what I will not be taking with me, I have more than I thought. It's amazing how we accumulate. The kids are doing good at school and have made some really good friends that will be hard to leave but they will have to become great at letter writing. I know when we get home to their old friends they will be fine.
We are going to go through the Upper Pennisula on the way home. We will take our time but not do to much hiking with Luke. It should be beautiful with the colors. I'm so looking forward to it. I'm ready for a change of scenery.
We feel very blessed with how well Luke has done so far and we continue to pray for this bmt to be a success and for him to remain infection free. There are several other children here who need prayers so please remember these children when you pray. Thanks, Sheila.
p.s. Happy Anniversary, Eric, 9 years and counting. I Love You.

Monday, September 16, 2002 at 08:10 PM (CDT)

Hello, Luke is still doing very well and for that we are truly thankful. We are only going to clinic one day a week now and his counts have been wonderful. If everything continues as is we will be home around the middle of October. We can't wait to see all of our friends and family back home but we will miss all of the friends we've made in Minneapolis. Luckily we will be visiting regularly.
Eric will fly home on Tuesday and work and work on making things nice and safe for Luke to come home. There are several guidelines for visiting Luke and I will post them before we come home. Thank You everyone for all your prayers and love and support, please keep praying for Luke to stay engrafted and that he stays infection free. God Bless, Sheila.

Saturday, September 14, 2002 at 07:02 AM (CDT)

Day +80
Yesterday we took Luke to clinic to see Dr. Grewal and he said Luke is doing really good. His engraftment stayed at around 50% so for that we are very thankful. They are going to watch Luke's engraftment closly to make sure he has enough donor cells so Hurler symptoms stay away. We should be able to come home in about 20 days that is just wonderful and I can't hardly believe it. God has really blessed Luke and our family. He will come home with his central line in and on csa until February that means his immune system will be supressed for about 6 more months. We will travel weekly to our University Hospital at home to have Luke's labs checked and hopefully get him into weekly therapy there. In January we will come back here for our 6 month evaluation. This really never ends.
Another friend of ours, Riley, who also has Hurlers went home yesterday. He is 100% engrafted after two transplants but he is doing and looking excellent. His web site is caringbridge.org/ok/rileybear. He has to come back in January also so maybe we'll see him. We hope so.
We've been having lots of fun as a family and tonight the House is having a special dinner for parents and have gotten babysitters for the kids. It should be a fun "adult only" night.
Thanks for checking in on Luke and keep praying for his engraftment to keep. Grow Cells Grow, Love, Sheila.

Thursday, September 12, 2002 at 07:21 AM (CDT)

Hello, Luke is going to get fitted for his other hand splint today. It's going ok with wearing the other one, he sometimes says off in the middle of the night but mostly he tolerates them. The kids are going with me because they only have a half day of school due to a staff meeting.
Eric is driving here today and we'll all be happy to see him. Luke really likes to ride in the van and we go to a drive in and eat. He loves it so we should have a fun weekend. We meet with Luke's Dr. on Friday and may know about his engraftment then or early next week. Thank You for all your prayers. Have a good weekend and I'll keep you posted. In Love and Thankfullness, Sheila.

Wednesday, September 11, 2002 at 11:23 AM (CDT)

To those who died a year ago today, we remember and pray for their families, for America ,for peace. God Bless America.

Tuesday, September 10, 2002 at 12:55 PM (CDT)

Day +76
The time here has gone amazingly fast. We have around 25 more days to go until we can hopefully go home. The doctors have not talked about going home yet, I think they are waiting to see how the engraftment test comes out. They drew the labs on Monday and we might know something at the end of the week or early next week. I want to thank everyone for their prayers for Luke. I can feel your support and love. I know it's made a huge difference.
Luke got fitted for one of his hand splints and amazingly he wears it(so far anyway). He wears it at night and when the other hand is made he'll alternate wearing the right one and the next night the left one because if you try to put both on at the same time Luke would feel like he was tied up. Thursday we go back for the other splint. The splints are suppose to keep his hands straight or straighter anyway.
Eric is wanting to come and visit. I think he may drive here and then fly home early next week and then fly back early October and then drive us home shortly thereafter. That would mean I would have the van here and could possibly start to pack it so we don't have so much at once.

The kids are having a fantastic time in school and it will be hard for them to leave but I think once they get home and in their school they will do fine.
I'll keep you updated as soon as I know the test results.
God's Blessings, Sheila.

Friday, September 06, 2002 at 05:51 PM (CDT)

Hello to all our family and friends and thank you for checking in on Mr. Luke. We've had a very busy week with therapy and clinic and the kids starting school. We have no plans for the weekend other than keeping Luke rested and well. His labs have been very good and his wbc count seems to be holding its own now. The plan is still to check his engraftment on Monday we have much hope that it will have stayed the same or go up. They do not give up on the transplant until numbers go below 10%, we pray for God's protection of Nick's marrow in Luke's body. I guess we're still chanting grow cells grow.
Luke is going to get fitted for hand splints next week as his fingers are starting to lean toward the index finger. He will wear them at night and I'm suppose to put them on after he falls asleep. I hope this goes smoothly. We will also see a hand surgeon before we go home to have his hand evaluated. This is typical for a Hurler child.
The kids love school and the teacher is very good. Today a music teacher came in and they had a really good music lesson. Nick is doing the same work that his home school is doing and hopefully he'll be right up with his peers when we get home. Natalie is a little tired from going all day but hopefully will adjust when we get home it will be a half day.
Please pray for all the sick children at the RMH and their families. More later, Sheila.

Tuesday, September 03, 2002 at 04:16 PM (CDT)

Day +69
The test results showed a slight drop in both the engraftment and the enzyme but both are still close to what they were before and Luke has enough enzyme to stop the Hurler disease process. The doctors feel that this is showing stable results but they are going to repeat the test on Monday to be sure Luke's not trending downward. If it looks as if he is losing engraftment there are a couple of different things they could try to save it however, the doctors are still hopeful and optimistic for this transplant. Please pray for Luke on Monday and that we'll have good results.
The kids started school today and they had a great day. They love the teacher. There are 8 students and they can't wait to go back tomorrow. It's really a fantastic school. I'm so happy it's available to them otherwise they wouldn't have been able to stay with me.
Eric left on Sunday and we had a nice week together but three children died last week so that was tough. One family is from Michigan about 1 hour from our house and Eric is going to try and go to the funeral. It's soooo hard to watch a family pack and leave knowing it's because they're child died. They really become like your own family. Everyone feels the loss.
Thanks for your continued support and prayer. We are so thankful and grateful. Love, Sheila.

Wednesday, August 28, 2002 at 02:10 PM (CDT)

Greetings,
Luke continues to do well and for that we are very thankful. Yesterday began his taper of csa(immune surpressant) His last dose will be the last day of October which means he will most likely go home on it and his central line will stay in until we come back in January. So I will have to do dressing changes and line flushes until it is removed. Luke will have to take two antibiotics for 1 year so I will leave his NJ tube in for as long as it'll stay because Luke is not a good medicine taker and the tube does not seem to bother him. He's doing awesome in his therapies and says two to three words consistantly and does know all of his colors and is learning the alphabet. Physical therapy is a little challenging mostly because the disease makes his bones stiff and his stature short but he tries like a trooper. Hopefully after surgeries this area will improve.
Eric got here monday morning and met us in clinic the kids were so excited to see him. It was a happy reunion. We are not doing anything particular this week especially since Luke basically can't go anywhere and we don't have a car. But there are alot of fun things to do at the House and there's always Dairy Queen within walking distance. The kids start school on Tuesday and everyone is excited for that day. One more month and we should be heading for Michigan. We'll keep you posted as to the enzyme and engraftment results. They were taken on Monday and we might know something on friday or tuesday. Keep praying thanks, Sheila.

Tuesday, August 20, 2002 at 02:37 PM (CDT)

Hello and welcome to Luke's web page. I really appreciate your checking in and if there is something you'd like to know or don't understand just e-mail me and I'll try and answer you.
My friend, Julie, left yesterday evening and we had a really nice weekend. It was nice to have company and help with the kids. The time just flew by and now we're a little homesick. But Eric will be here on monday and we're all looking forward to that visit.
Luke saw Dr. Peters yesterday. Dr. Peters is the main guy for storage diseases. He is really pleased with Luke's progress and very optimistic for successful bmt as are we.
The doctor thinks he may start Luke's taper off of csa(immune suppressant drug) so that he is finished by the time we go home in October. That would mean his central line could come out and most of the drugs ceased. The csa has alot of side-effects which makes it necessary to be on several other meds( high blood pressure, antifungle, antibiotics etc.) But because Nicholas was our donor and Luke shows no signs of Graft vs. Host disease it is possible for us to start weaning Luke off of csa (You can't stop cold turkey). I thought this was great news. On Monday we do another enzyme and engraftment test(typical protocol) because it's day 60 and then another on day 100. The further you go out keeping engraftment the more likely it will stay. Please pray for Luke and that the test comes back favorable. We are very hopeful.
School starts in two weeks. I wish the kids could start at their school at home because it's sooooo good but they will learn the same things right along with their peers because the teachers here keep close contact with the home schools. I think in the end it will be better to stay together, two months would be too long not to see the children.
I think of everyone at home often and are overwhelmed by your support and generosity. I pray for all these children here and their parents who have to endure so much. I thank God for all my many blessings and that I still have my baby and how much he has grown and accomplished since we've come here. When you witness children who have never been able to eat normally, or walk or talk, children whose parents have never heard them say a word, or have lost their baby usually after a long time of doctors, hospitals and therapist you really appreciate many little accomplishments like just not being in pain, sometimes just the fact that they are still breathing means alot. Each one is truly a gift hold yours close. Peace and Love, Sheila.

Thursday, August 15, 2002 at 01:03 PM (CDT)

Day +50
Well, today marks our half-way point, 50 more days and we'll be heading back to Michigan!(Lord willing). Everything continues to go well. We had clinic this morning and all Luke's counts were good so he didn't have to get anything. He got extremely tired at clinic and I had to cancel his 11:00 therapy because he just wasn't up for it today. We rescheduled for tomorrow. Now he is napping and it was raining so I let the kids pick out a movie to watch.
In the morning my girlfriend, Julie, will be here and we're looking forward to that. We should have a really nice weekend and then Eric will be here the next monday after that until Labor Day. So we should be all set for company. The time should fly by as it always does.
The House is having Bingo tonight so the kids are looking forward to that. Everyone gets a chance to win and they have cool toys and prizes to pick from. They are really having a good time here and Luke loves to have them around(so do I). Hope everyone has a nice weekend. I have to take Luke in to clinic Saturday morning for Labs only but that shouldn't be any big deal and then we're free the rest of the weekend. Thanks for your prayers and support. Love, Sheila.

Tuesday, August 13, 2002 at 07:06 AM (CDT)

Day +48
Hello, Yesterday at clinic Luke's wbc count was still low and they had to give him a boost. This is a pattern of every 3-5 days his counts will drop. The doctors assure me this is normal but I'm ready for them to come up on their own without any help. Otherwise in every other way Luke is doing fine. He had speech therapy yesterday and physical therapy today. He enjoys going to therapy because it's alot of play and they have a cool swing that's an intertube hanging from a rope that he likes to swing on.
Nick's birthday was a huge success, he got to go swimming all morning and then our friend Ruth had a birthday party for him at a friends house. There was a girl that was Natalie's age and a boy Nick's age so each got to make a new friend. Ruth had ordered him a cake from cub foods with balloons, sprinkles and his name on it. Luke and I could not go so that was the only bummer but they brought us back some cake. I think Nick had a good time and he got some cool presents from Grandma's and Aunts so it was a really nice birthday even if we were so far from friends and family. Eric called last night to talk to him but the kids were so exhausted they were already asleep.
My friend Julie is coming this weekend to visit and we're really looking forward to it. It should be another nice weekend. The weather has cooled down and so it's much more pleasant.
Please pray for a cute little boy named Addison he has a rare form of liver cancer and has to go back in the hospital on Saturday for another round of chemotherapy(100+hours)He is three years old and just the sweetest little guy and he and his family have a long road ahead of them as his treatment plan is long. They will most likely be here for another year and they have already been here for 6 months. His web page is caringbridge.com/mn/ajtoivola
and continue to pray for Luke that his wbc count will go up and he won't get a fever or an infection. Thanks. Sheila.

Monday, August 12, 2002 at 07:42 AM (CDT)

Hello, My sister-in-law, Ruth, was here for the weekend and we had a really good time. It was very nice to have company and the kids loved it. It was really hot on Sunday so we kept Luke inside our room for most of the day and Ruth and I took turns taking the other kids on outings. Another mom who's here took me and the children to the theater and we saw Stuart Little. It was a great movie and alot of fun. We also went to Dairy Queen twice, ordered pizza, and ran thru the sprinkler. It couldn't have been a better weekend.
Luke has been feeling good but gets exhausted easily. Today he has clinic and I hope to see his wbc up. That's the one area he is not progressing in. This afternoon he has speech and physical therapy, usually we have them in the morning but we had to change times so I hope he is up from his nap in time to go.
Today is Nick's birthday and we have balloons all over our room that Ruth bought. We've been celebrating all week as people has sent gifts and cards. He has had a really nice birthday in spite of the circumstances. The activities director is taking the kids swimming today ( I hope it doesn't rain, it looks like it could) and then our friend Ruth is taking them to a friend of hers who has kids the same age for a little party. Luke can't go but they'll bring us back some cake. It should be a good day. Happy Birthday Nick!
Thanks for checking in and sign the guestbook and please keep in touch, it is always nice to hear from friends and family. God Bless, Sheila.

Friday, August 09, 2002 at 05:24 PM (CDT)

Day +44
Luke had clinic and occupational and speech therapy today. It was a busy day. The speech therapist thinks Luke is trying to say too many words at once and they're getting mixed up together which makes him hard to understand so we're trying to get him to say two or three words at a time and no more. Ocupational therapy is going really well, (this works on fine motor skills) right now it's twice a week but next week he'll go down to once per week.
The kids are doing really good and keep Luke entertained. Today they went bowling at Mall of America with a worker from the house. It was lots of fun for them. I have yet to go to Mall of America and doubt I'll have a chance before I leave.
Lots of people have been very supportive and helpful during my stay here and I'm very grateful to everyone but there is one lady I'd like to write about, most of you won't know who she is however, I'd like you all to know about her. Her name is Ruth and she's a retired missionary(midwife) she is the most giving person I think I've ever met. She keeps a schedule of people she visits and helps each week. Every week she visits elderly in nursing homes with Alzheimer disease. She takes those who can no longer drive to the doctor, store or wherever they need to go. She sits with people dying of cancer. And everyweek she puts Luke and I on her schedule of people to visit and help. I get to go to Target and the grocery store because Ruth is here with Luke. She's brought me food and cookies, books and movies. She tries to arrange a ride for me on Sundays so I can go to church while she sits with Luke. When she found out it was Nick's B-day on Monday she right away was planning a party for him. She is always faithful to pray for Luke and say an encouraging word. She has Luke call her Auntie and she loves him and he loves her. She's the one who stayed with Luke when I had the flu on the day of his transplant. What a blessing and inspiration Ruth has been. She keeps her schedule full of people who need her and I'm blessed to know her. Thank You Ruth!
Love, Sheila.

Thursday, August 08, 2002 at 07:24 AM (CDT)

Hello Friends,
Eric left early this morning and it's always a sad time. Please pray that he has a safe trip. We had a really nice week together and the time really flew by. He will most likely fly back in 2-3 weeks and then drive the time after that to bring us home.
The Ronald McDonald House is really full with only one room open. There just are alot of sick children. The House is a very nice, clean, and compfortable place to stay. They have alot of activities for the kids, provide free laundry and cleaning supplies and usually there is a meal 4-5 times per week. It is definatly a blessing and it has taken alot of burden off not having to worry about an affordable place to stay. It is a charity that helps families if you ever have a chance to donate it's a safe area to give your money to.
Luke is doing ok. His wbc is the only area where his numbers are sluggish. The doctors say this is normal but I'd like to see it go up soon. It seems like it's taking a long time. Otherwise he is feeling ok just a little easily tired. The kids have been good for him and they play well together.
The temperature is finally cooler and it is really nice. Now we can go outside more. The kids really enjoy it outside. I hope it stays this way.
My Father-In-Law put 9 new windows in our house and there are a few more to do. Eric also has quite a bit of work to do before we come home and we're going to buy some room and furnace filters to make it safer and more compfortable for Luke to come home. Thank You to everyone who has donated to the project and also given their time and energy it is very much appreciated. Thank You Thank You!
Please keep in touch and I'll keep you informed. Peace to All. Sheila.

Tuesday, August 06, 2002 at 03:21 PM (CDT)

Day +41
Hello, Yesterday we went to clinic and everything looks really good so far, the Dr. has taken Luke off of bactrim(an antibiotic to help prevent pneumonia) because they think it might be keeping his wbc count down. We will restart the drug in a couple of weeks or we may go to a different drug you only do once a month and it's inhaled thru the nebulizer. The Dr. asked if Luke has been sick at all and I proudly said no so of course at supper he started getting sick and was sick most of the night. Today however, he has been ok. It kept me up late doing laundry so I'm a little tired today.
We are getting close to half way point on our stay here. It really has gone fast. I will keep the children with me here and sign them up at school here. The teacher stays in close contact with their home school and tries to do the same work so they keep up with their classmates. There are other siblings their same ages so I think they'll make alot of friends. My son is excited about no uniforms because at his school they wear uniforms. I like the uniforms and Eric brought Natalie's with them and she looks so cute. No fuss with what to wear each morning. School starts the day after Labor Day.
Two of our friends Taylor and Alex are back in the hospital with fevers please pray for their quick recovery.
Eric will leave at the end of the week and we will look forward to him coming back soon. But there is much to do before we come home and he'll be very busy and very lonely. Thanks to everyone that has helped. Keep you posted on Luke's progress, the next enzyme check is August 26th please pray for good results but so far so good. Thanks again for checking and praying, Best Wishes, Sheila.

Sunday, August 04, 2002 at 03:59 PM (CDT)

Hello Everybody, Eric and the kids got here safe and sound friday afternoon, they made it in 10 hours which is incredible. We went to clinic on Saturday and they called us back in for a transfusion after we came back to the house but instead of just giving him the cells they decided to recheck the labs and the first lab was a bad draw so we went home and didn't need anything. We go back to clinic on Monday. Today we had a babysitter for Luke and the rest of us went to church and out for dinner it was really nice.
Our air conditioner has been acting up and blowing hot air instead of cold. They've been here twice to fix it but I think they have to come back tomorrow. I'm glad it's a little cooler. Last night we had a huge lightening storm, we went in the van to a drive-in to eat and when we got back to the RMH all the power was off. Everyone was hanging out downstairs because the rooms were so dark but eventually we came up to bed and drew meds with a flashlight. I think the power came back at around 3 this morning. Eric will leave one day this week and I'm going to keep the kids with me. We are going to try to see Stuart Little before he goes. It's nice to have some family time, something I've always taken for granted before. Luke continues to do good and we're taking one day at a time and enjoying each one. Love to hear from all of you and thanks for checking on Luke. God Bless, Sheila.

Thursday, August 01, 2002 at 07:55 AM (CDT)

Hi Everyone, This morning we have clinic and then the rest of the day off. We couldn't go outside yesterday because it was too hot but today is suppose to be cooler. Luke is doing really well and hasn't gotten sick in about 4 days. He is also eating more so I stopped the tube feeds. The best news is Eric is bringing the kids this weekend. hurray!
I am so excited to see them. Nick's b-day is August 12th and I was afraid I would miss it but now we can celebrate. I want Eric to leave the children here with me but we haven't made any definate plans yet. Our friend, Morgan, is back in the hospital please pray for her to improve and get out soon. Her mom and dad just want their little sweet girl back. The RMH is at full capacity. It really is a wonderful place to stay and we're having a meal tonight and it's a good thing because I'm out of food. The people who volunteer to bring meals really do a great job and it's such a help. I'll update more if any news comes along otherwise I'll be playing with my kids. Also I'm having other visitors my sister-in-law will be here August 10 and my friend will be here the 17th so I think August will fly by with all the company. October will be here before I know it. Eric will have heart failure when he sees all the stuff I've accumulated. It will be interesting fitting it all into the van but that's a ways away. Have a good weekend and keep in touch. God Bless, Sheila.

Tuesday, July 30, 2002 at 09:31 PM (CDT)

Day +34

Hello Everyone, Luke is doing fine, his csa(immune suppresant drug)is low and they've increased the dose to three times per day instead of two. Otherwise nothing really new to report. It is very very hot here and suppose to be hotter tomorrow which means we cannot go outside and Luke loves to go outside. Tomorrow may be a long day. I was thinking about when we first found out that Luke had hurlers and it was like this black cloud followed me every where I went. I could be doing the dishes or visiting a friend or playing with the children and there it was haunting me, not going away. It was especially difficult when Luke was doing something sweet and cute and then suddenly I'd remember he could lose all of his abilities and thoughts and personality and I'd break down and cry and beg God for my son's life. I didn't think that weight would go away, I never thought I'd feel normal again but I do. Now being here seeing his improvements I have a renewed hope. I know there will be difficulties and he will have many obstacles to overcome many of them physical. He will never be "normal" but he is so full of life and personality and he is so brave to do all that he has done in his short life so far. The blessings of this baby for me are more than I can name. On monday he said a whole sentence perfectly it was awesome and he knows his colors really good and he even tells the therapist no when he wants to do something else. Each step and achievement however small are so wonderful and significant. I would have missed it had he been perfectly "normal". Each good day isn't a bad one and they can't take those good days away I've got them stored in my memory to recall as I need to. My hopes for Luke are high, my faith is strong and my prayer would be a cure Lord please a cure. God Bless, Sheila.

Saturday, July 27, 2002 at 06:37 PM (CDT)

The weekends are kind of quiet for Luke and I we just hang out in our room and play. Of course there is his medicine schedule, dressing changes and line flushes to keep us busy. We take a couple of walks a day(weather permitting) and talk to Eric and the kids every night. Today we were invited to a birthday party of a two year old boy here at the house, we went down but stayed our distance in the stroller with mask on, dropped off our present and took our cake back to our room to eat. It did make me kind of sad to realize how much Luke can't do or participate in. But what's important is that he does now have enzyme and this will all be worth it. Please continue to pray for Luke that he remains infection free and that the donor cells are strong and keep growing. Thanks to everyone for all you've done and given it really has made this a little easier. God Bless, Sheila.

Friday, July 26, 2002 at 11:27 AM (CDT)

Hello Everyone, Luke and I went to clinic this morning and found out that Nick's cells did grow a little more and his enzyme level wasn't quite done because the director of the lab wasn't there to sign off on it as official but they did tell our dr. that he was in the carrier range(which means he has enzyme!)PRAISE GOD! They do two different test to check the donor cells and here's where it's a little confusing one level went from 48% Nick to 56% and the other went from 42% to 83% the 56% one is the important one. Hope you get that. I asked when do they think the two marrows are going to live together in harmony and be stabile and the Dr. said at 6 months they get a good idea and at 1 year they feel even better so what he said this means is we're still in the hopeful mindset but things are going good. I asked God to give me a sign to have Nick's cells increase even a little to let me know it's ok and well it's ok. Luke continues to do well he is especially tired and needs to rest often. His white cell count continues to be sluggish and he needs a boost every so often but his platelets are fantastic and rbc are holding their own but I wouldn't be surprised if he needs a transfusion next week. Our prayer request would be that Nick's cells remain strong, that Luke remains fever and infection free and that a cure is found soon. Thanks for checking in and please keep in touch. Praise God for all the good things He has done for us. Love, Sheila.

Wednesday, July 24, 2002 at 10:10 PM (CDT)

Day +28 Luke went to clinic today and his wbc count is low again and he had to have growth factor which just goes into his line from an iv bag. All of his other labs continue to be good. Luke has been especially tired the last couple of days and has also started throwing up his night time meds which keeps both of us up cleaning him and everything up I don't know why he all of a sudden started this routine tomorrow I think I'll try giving the meds earlier and seperatly and see if this helps. Thursday we don't have any appointments so maybe the extra rest will do him good. An aide from the hospital came to visit Luke tonight and we had lots of fun and I even went for a little walk. She may come again next week so I can go to the store. It was nice to have company. Well, friday is still the big day to find out if Luke has the missing enzyme, we are very hopeful and we know God provides. I'll keep you posted on any results as I get them but after I tell Eric because he does not like to hear second hand. The kids are doing good and having alot of fun going to people's houses, I miss them very much and I think they'll be here soon. Right now we're having a thunderstorm and I heard you need rain back home so I'll try and sent some your way. There are new pictures my brother posted for me if you want to look. Take Care, God Bless and please keep in touch, Love, Sheila and Luke.

Monday, July 22, 2002 at 03:52 PM (CDT)

Day +26 Hello Everybody, Luke went into clinic this morning and had his labs drawn and some blood taken for the cell test and the enzyme level test, we need extra prayers this week. We should know something on Friday or Monday for sure. Nick's enzyme level was 48 and they would like to see Luke's level be close to that. After clinic he had speech, occupational, and physical therapy but it was too much to do all these back to back so we didn't make it thru physical therapy and Luke had to come back to the RMH for a nap. I changed speech to a different day because occupational and speech therapy are very similar. Alot of fine motor things(puzzles, blocks)and it can get a little tedious for Luke. Luke is learning his colors and is doing really good recoginizing and saying his colors he even says yellow really plain. His labs have been good he hasn't needed any transfusions for awhile but his wbc count is low every so many days so he'll get growth factor which boost the wbc. Luke loves to check for mail and the other day we had a big box of stuff from Eric's cousin, Sue. Luke was thrilled and there was alot of stuff for me too so it was fun. Thanks Sue. Thanks for checking on Luke and thank you for all your prayers. We couldn't ask for any better than everything that everyone has done, I can't even list all the people who've been so good to us there are so many but Thank You all alot. Love,Sheila.

Wednesday, July 17, 2002 at 09:49 PM (CDT)

Day +21 Hello and I'm sorry I've taken so long to update, we got the cell test results back and I had to tell Eric first and he was at work. They tested Luke on day +14 which is not what they usually do usually they wait till day +21 so they are going to retest on Monday and do an enzyme level at the same time. The results showed a 50/50 mix of Luke's cells and Nick's cells. This is ok because you only need a little enzyme to do the job what they are unsure of is if it will stay this way or if Nick's cells will increase or decrease. So our motto is still Grow Cells Grow. We are very hopeful still and are thrilled to have some engraftment. God has been so good to Luke all thru transplant and we are very thankful for all the good days we've been having with him. Thank You for all your prayers and support it's working.
Luke still has tube feeds at night and these are going fine. He ate a little more today so maybe the night feedings will decrease but it really isn't a big deal to do them. They've increased his immune suppresant drug and decreased a diuretic. I think I've got his meds down now. He really only gets sick about once a day and usually in the morning. Tomorrow he has physical and occupational therapy so he should be good and tired at nap time. We really miss our family and our friends but e-mail and letters really help. We took a walk with Riley and his mom tonight and that was nice to have something to do. Keep Luke in your prayers and I'll let you know if anything new develops. God Bless, Sheila.

Tuesday, July 16, 2002 at 07:19 AM (CDT)

Eric got here early Saturday morning and Luke was so excited to see him. Sunday they unhooked Luke from his iv pole and he was running back and forth in his room so happy to be free. We were discharged about 2:00 with more medicine than you can imagine especially for a little two year old. It's my new full time job giving the meds on time and correctly. Luke is doing very well at the RMH he is usually only sick in the mornings and infrequently during the day. He tube feeds all night and eats very little during the day but will take bites here and there. Eating may prove to be a challange. Most but not all of his hair fell out but he looks really cute like that. Eric left on Monday evening and we were sad to see him go. We had a really nice weekend together and we've learned to appreciate each good day. We should hear the results of Luke's donor cell test either today or tomorrow. First I am going to tell Eric and then I'll post it here. God has really blessed Luke thru all of transplant and we feel very hopeful He will continue. Thanks for all your prayers and support. love, Sheila.

Saturday, July 13, 2002 at 06:22 AM (CDT)

Eric is flying here today! I can't wait to see him. The kids aren't coming but they will next time. Luke had a rough couple of days and I think it was all related to his nose tube but I did not want to take it out because he will not tolerate the meds orally luckily he seems to be getting used to it now and was alot more himself yesterday. He will throw his meds up if they push them thru his tube all at one time so we're still working on timing. He still does not eat anything but will suck on starburst candy and he's learning his colors while he eats them. Tomorrow Luke is suppose to get out of the hospital. I can't wait I think he'll feel much better out of here. Monday we'll go to clinic at 8:30 so it will only be about 12 hours by ourselves. We may have some preliminary results about donor cells this week so I'll keep you updated. God's been good to Luke so far so we're very hopeful. Grow Cells Grow. Love, Sheila.

Wednesday, July 10, 2002 at 10:50 PM (CDT)

Luke was very tired and out of sorts today. He was not himself and generally did not feel good. I don't know if he is actually in pain or just mad about yesterday. The resident thought he may have some mouth sores so he gave him a little bit of morphine. Luke did seem to perk up after getting the pain med maybe he is in pain I just don't know for sure. He still is eating nothing but the tube feeds are going very well as is the medicine down the tube. The Dr. talked about us getting out on Sunday but I don't know if Luke will be ready by then he is so down in the dumps. So some things are going well for Luke and some things need more time but one thing is the same Grow Cells Grow. In one more week they'll check for cells. Please keep him in prayer. Thanks everyone for everything and everyone who's working on the garage sale for Luke Thank You! Love, Sheila.

Wednesday, July 10, 2002 at 07:33 AM (CDT)

Yesterday we had a black cloud with a silver lining. Luke had to go down to radiology to have his NJ tube placed and it was the worst thing he has been thru since he came here. The people down in radiology were unneccesarily rough and mean. It was so bad that the nurses that came down with us from our unit said they're going to fill out a report about it. Needless to say Luke was a little tramatized from the whole experience and he had a really hard time getting used to the tube. He would not swallow so he kept drooling everywhere and soaked three pillow cases. I wanted to pull the thing out because I really thought he was suffering but the resident talked me into waiting 1/2 hour and then Luke slowly started to adjust and at about 9p.m. we put in his first dose of medicine and he kept it down. So far this morning he seems better adjusted to it. They also started tube feeds which means he will get off of tpn(iv nutrition)and that will be better for his liver. He still has very little interest is eating but will occasionally have some milk or a cracker. His hair started falling out and he had bald spots here and there and it was getting all over the place so we shaved his head yesterday. He really looks like an official bmt patient now. Luke had one busy day yesterday hopefully today will be less eventful! Write more later, Love, Sheila.

Monday, July 08, 2002 at 10:18 PM (CDT)

Luke had a busy day. First he took a real bath which he hadn't done since we got here and he just loved it, in fact he didn't want to get out. When he did get out he was instantly sick. I think it was just a coincidence and not really from the bath but he ended up having nausea medicine and sleeping for a couple of hours. They are working on getting us discharged which means all the I.V. meds have to go oral. The first one they gave orally was an antibiotic and he threw it up instantly so we tried again and again it came right back up. We may end up getting an NJ tube which goes from the nose past the stomach right into the intestine to avoid seeing the medicine again. It'll be at least 3-4 days before we get to go to the Ronald McDonald House but more likely early next week. Luke did get to ride in his wagon around in the hall with his mask on and he enjoys this very much. Luke wears his mask really well and will point to his face when he wants to go out and he never pulls or bothers with it at all. Tomorrow will be day +13 so we have another week before they test for cells. I definatly do not want to do this again so grow cells GROW!
Thanks for all your prayers and support and please keep in touch it's nice to hear from everyone. God Bless, Sheila.

Saturday, July 06, 2002 at 06:29 PM (CDT)

Day +10
Luke felt much better today. His platelets and red blood cells were down quite a bit so he got both of these today. They gave him benedryl before to help prevent a reaction and that had him jumping on the bed and just acting crazy for about 1 hour, then he got mean and never did take a nap so next time he needs blood products they are going to omit the benedryl and see what happens. The next exciting thing that happened was his wbc were high enough that Luke got to go out of his room with a mask and ride in a wagon in the halls. This is a big event everyone comes out to see you and we took pictures. Luke was very happy. He even ate a little today. I want to thank everyone for all their prayers for Luke and that Nick's cells will go, it's my biggest wish and we're very hopeful. God Bless, Sheila.

Friday, July 05, 2002 at 07:08 AM (CDT)

Luke has learned a new word since we've been here and it's Yucky. He was taking some medicine and someone asked him if it was yucky and he just laughed and started saying yucky and he loves it if you say it and he just gets the biggest kick out of saying yucky or if anyone else says it. Well, starting last night Luke is feeling Yucky. He's been sick in the night and his wbc count is way low and he has no energy. They gave him some nausea meds and that did help but poor Luke is not feeling very well. He takes so many medications it's no wonder his tummy is yucky especially since he does not eat.But when he's not getting sick he still has a little smile and he tries to feel good. I don't know if he'll feel like any therapies today.
Yesterday three people got to go home from the unit. They were very excited especially since it was a holiday. One was Riley a little hurler boy from down the hall, congratulations Rileybear. Hopefully the rooms won't fill up too quickly.
The other thing that's yucky here is the food (I hate to complain but) it's the same food every meal. I try to go back to the RMH when they have meals and things just for some variety. Yesterday I broke down and went out to eat. Breakfast is just about the best meal they have and the ice cream isn't too bad I can live on that. Yesterday Ruth(the retired missionary who loves Luke) brought me key-lime chocolate chip cookies have you ever heard of such a thing well they are soooo good. I ate lots of those for supper and since Luke won't eat I ate one for him too. I hope I'm not boring you. I'll let you know any new developments but it's still grow cells grow.
Eric's doing really good with the kids and he took them canoeing and swimming yesterday. It's a good thing he went home because the check engine light came on in the van so he's getting that looked at today. Thanks everyone for everything, please keep praying Love, Sheila.

Wednesday, July 03, 2002 at 05:43 PM (CDT)

Day +7 Luke continues to do well, Praise the Lord! He had physical therapy today and is just charming the nurses like crazy. He really is being a cutie. A local church has taken us under their wing and helps with Luke and visits often. They've offered to take me shopping and out to dinner etc. It's really been a blessing(there's another one). God is so good. Eric and the children made it home safe and sound. They will be back maybe in August. I miss them very much but talk to them on the phone everyday. I really appreciate all the prayers, e-mails and calls it's keeping me uplifted and encouraged. Thank You. If anything changes I'll be sure and post it but right now it's just grow cells GROW! Happy Fourth of July. Love, Sheila.
Please pray for Morgan who has to have major surgery next week. and Taylor who's just starting her BMT. and Riley who gets out of the hospital tomorrow. Yea Riley!

Tuesday, July 02, 2002 at 11:52 AM (CDT)

Today was the hardest day since we came to Minneapolis, this morning I had to say good-bye to my family. They headed back to Michigan at 6:30 this morning. There is some work that Eric promised he'd do so he went back to work for about a month then hopefully they'll be back. Natalie and Nick just clung to me and wanted to stay and I said let's get Luke and all go home( if only we could) needless to say I haven't been myself all day.
On a lighter note, medically Luke continues to do fine. Yesterday Dr.Peters came to visit and taught Luke to say grow cells grow it's so cute. I know alot of people are praying for those cells to grow I feel we can't fail some way some how we're getting some enzyme for this child. God is blessing so far. Luke is a little more tired and takes good long naps especially after he's had a therapy. Today he had speech and then occupational back to back so he's out cold. He has not lost his hair yet but he is a little pink and looks like he has a suntan from the radiation and chemo he got. Please keep praying for Luke to engraft and feel free to send some real mail anytime the address is Ronald McDonald House, 621 Oak St. SE, Minneapolis, Mn 55414. Thanks for all your prayers and support they are greatly appreciated. Love, Sheila.

Sunday, June 30, 2002 at 08:26 AM (CDT)

Day +4
Luke continues to do well, he has a little high blood pressure which they control with meds and his bottom is a little red. He still doesn't eat much and is on TPN, but he is happy and plays and sleeps well. The doctors are very hopeful for this transplant and we're just waiting. It's very hot here and yesterday the kids went swimming in the Mississippi River, I try not to think about how gross that is. Thanks to everyone for their prayers and support we really feel it and find alot of comfort in it. I'll keep you posted on any new updates as they come along. So far God is really blessing Luke and we pray that it continues. A new hurler baby is coming on tomorrow, welcome Taylor. She is only 8 months old and sooooo cute. They had to move a boy to the adult unit to make room for her so we're very full here on 4-e. Keep these kids in your prayers. The best part of Luke's day is his therapies he really is a charmer and does really well. Hope everyone has a good summer. Love, Sheila.

Friday, June 28, 2002 at 11:24 AM (CDT)

Day +2 Luke is doing really well, his liver enzymes were a little high yesterday and they played with his meds and they're back down today. He has speech therapy 3-4 times a week and is saying alot of new words and is just doing wonderfully. He also has occupational and physical therapy 3-4 times a week so they keep Mr. Luke really busy. His wbc is coming way down as expected. So for right now we're just waiting on Nick's cells to grow. Nick is feeling very fine and went to vacation bible school today and they were going to have a circus. So he doesn't seem any worse for the wear but he did say if this doesn't work it's Sis's turn next.
The other great news is Riley our hurler friend down the hall who is on his 2nd transplant is 100% engrafted with donor cells! This is a real answer to prayer and we are all thrilled. Praise God! And today is his birthday so he couldn't have gotten a better birthday present. Happy birthday Rileybear.
I feel much better and am back to taking care of Luke. I'm not sure when Eric and the kids are going home but soon. I sure will miss them. Keep praying for those cells to grow. Thanks for checking in, Love, Sheila.

Thursday, June 27, 2002 at 10:32 AM (CDT)

Day +1
Sorry I didn't update yesterday but I got the flu wednesday Morning at 2 am and Eric had to come over the hospital to be with Luke so I could go back to the RMH and I couldn't even leave the bathroom. So I missed the whole transplant! Eric came back over and got Nick at 5am. He went into surgery and did really well. The doctors were very happy with the cell concentration they got and after some processing to remove the red blood cells they did the transplant about 3:oo. Everything went as good as it could go. Now we wait two to three weeks to see if Nick's cells grow. Please pray Luke doesn't get the flu and that he engrafts. I came up to the hospital today and am wearing a mask. Eric's going to stay with Luke again tonight because I'm still feeling a little weak. Eric has just been so terrific. Luke has been tired but feels good and hasn't thrown-up since he got radiation on tuesday but usually these kids don't get sick until day+3 on. We met a hurler boy here for his 5 year post transplant check-up so that was encouraging and Elliot's mom called me yesterday and said he's doing really well so we're very hopeful for Luke. Thank you for all your prayers. It's in His hands now. God Bless. Love, Sheila.

Sunday, June 23, 2002 at 07:51 AM (CDT)

This morning they started Lukes Immune suppresent drugs which means he'll have virtually no immune system. It is very scary. I pray for God's protection. One of the drugs causes swelling and hair to grow all over the body so Luke's looks will be altered severly. We have two more chemo sessions. His eating is slowed way down and will most likely end by transplant day. This will be a long three weeks as he will prabobly be very sick until his wbc start to grow again. Please keep him in your prayers.
They are bringing me an excercise bike for my room today. I guess so I don't waste away. Luke had a wonderful nurse last night she even set up a baby moniter so I could go for a walk while he was asleep. Most all the nurses have been terrific so far. I look forward to all your messages and e-mails and real mail. I will bring the RMH address over so I can post it in case anyone wants to send a real letter. Monday I get a care partner which is someone from the community who will help you while you're here going thru this torture. I'm really looking forward to it.
The kids are behaving wonderfully and so is Eric. He's been a big help and has taken wonderful care of the children. Eric is going to a church again this morning that he likes and is going to talk to the pastor about coming up on Luke's transplant day to pray and say a blessing for the bone marrow. please also pray for Nick has he is having his marrow havested Wednesday. I'll try and write after the transplant and let everyone know how things went. I feel your prayers and am much encouraged. Love, Sheila.

Friday, June 21, 2002 at 08:49 PM (CDT)

Luke's blood pressure is fluctuating between high and normal, they check it often and have decided to wait on giving any meds for it right now. He had a pretty good day and played with Nick and Natalie for about two hours. He still isn't eating very well and they may do TPN soon.(IV feeding). I went to the red cross to donate blood for Nicholas in case he would need some on Wednesday when they havest his bone marrow. I had to take a taxi in the pouring rain and the lady blew my vein and she wanted to give up when I said no try the other arm, finally we got a pint. I'm really not that confidant they'll have it here and ready but I hope so.
Luke is adjusting better to being here and now raises his arm for his temperature and raises his leg for the blood pressure. He still says bye,bye and see you later everytime but he no longer fusses. He really has been very cute in his sayings. Thanks everyone for all your prayers and support, we're very hopeful. Keep in touch. Love, Sheila.

Thursday, June 20, 2002 at 09:14 PM (CDT)

Today was fairly uneventful but Luke got his new chemo drug today and will get that one for the next 4 days then radiation on Tuesday and transplant on Wednesday. It will go fast until then but after transplant there's alot of waiting(Upon the Lord). Luke is doing ok he's a little more tired and isn't eating very much but he isn't in any pain. He was having a little nausia but they increased his med for that and I think he feels better. The unit is very full so there are alot of kids in need of prayer if you could remember everyone on 4-e. Especially pray for Riley to engraft, along with Luke if you would.
Eric is taking good care of the kids and they're doing ok. Keep in touch and thanks for checking. Love, Sheila.

Wednesday, June 19, 2002 at 09:20 PM (CDT)

Today Luke got two doses of chemo (morning and Night) tomorrow he starts a new drug for 5 days. He is doing ok, he still doesn't like the nurses but he did warm up to the therapist. He is eating less and sleeping more but the affects of the chemo won't really show until after transplant next Wednesday. There is alot of not knowing and waiting involved with BMT's so it's especially nice to have the Lord to cast your burdens on Him. Eric is feeling better but when he came to visit Luke he wore a mask. Nick and Natalie were excellent as they were here in the hospital room most of the day. Tomorrow there having a little fair to raise money for children's special services(I think) and they'll go to that with Eric from 10 to 1. There is suppose to be a turtle race, face painting, hotdogs etc. Then Friday a women from the House is taking the kids swimming from 12 to 4. That will give them some fun and Eric and I some time alone with Luke. Thank you for all your prayers, keep them coming. Write in the guest book if you want. Love, Sheila.

Tuesday, June 18, 2002 at 06:25 PM (CDT)

I'm sorry for the delay in an update but I couldn't figure out how to get on line at the hospital because you have to dial 9 to get out but eventually I did. Luke had surgery on Monday and they really worked him over good but he did ok. His spinal tap revealed near normal pressure which was very good, he had tubes placed and there was fluid in the ear so his ears are draining a little but he has drops I put in twice a day. He has been a little bewilderd since waking up but he is slowly adjusting. Everytime a nurse or anyone comes into his room he tells them bye-bye and all done and when they leave he says have a nice day.But he hasn't warmed up to anyone yet. He had his first chemo this morning and it just went into his line over a 2 hour period, he has another dose tonight of the same stuff. He is still eating and everything but that will soon stop. But everything is ok so far and we're just really thankful to God that his surgeries went as good as they did, it was answered prayer.
Eric has a stomach virus and couldn't come to the hospital today. He and the kids stayed at the Ronald McDonald house. I got a carepartner this afternoon and got to go see them and take a shower. Eric was doing much better and hopefully can come tomorrow.
Today is day -8 so we're on the count down to transplant. Please pray for engraftment and for everything to go smoothly. I can really feel Gods presence and everyones prayers thankyou. Sheila.

Friday, June 14, 2002 at 03:26 PM (CDT)

We met Dr. Peters today and everything looks good for Luke to go ahead with transplant. He will go in Monday morning really early for his central line and various other things. Tuesday chemo will start and Wednesday the 26th is transplant day. We really need alot of prayer for Luke to engraft. Nick is the doner and I'm going to donate my blood in the rare case Nick would need it. The other good news is Nick is not a carrier of Hurlers and has a high normal enzyme level. Luke had his eyes checked today and they have a minimal amount of cloudiness and it doesn't seem to be affecting his vision. We have nothing this weekend so I hope we can have some fun before all this begins I'll try and update sometime on Monday. The weather here is really nice. Have a good weekend. Love, Sheila.

Thursday, June 13, 2002 at 09:14 PM (CDT)

Today was a very busy day and a little mixed up, we went to our first appointment and Luke wasn't on the schedule so they said go to your next appt. and they never heard of Luke either.Eventually it all got worked out but it was a little frustrating. The day was filled with blood draws,x-rays etc. Luke and Nick both did fine but we are a little tired.
At dinner we did get some encouraging news, a women brought her son here from Alabama for transplant because he's had anemia for 15 years and her other son was a perfect match. Today they had pre-transplant checkups and he was found to be fine and they're going home. Only one explanation God heals!!
Tomorrow we see the transplant Dr. and sign consents. Luke gets his eyes checked. Then we have the weekend off. Hopefully, we can get some good family time in and we may move to a new room. Keep praying for Luke and all the sick children here, it's nearly a full house. Love, Sheila.

Wednesday, June 12, 2002 at 12:58 PM (CDT)

We made it to Minneapolis but the journey was a tough one. We spent the night with Eric's brother (he's closer to the ferry) Monday night and we were having a great visit until Nick got sick in the night and none of us got much sleep. We were up at 4 am and my sister-in-law got up with us to make us breakfast(thanks Mel) We left at five and drove 1 1/2 hours to get on the ferry. The weather was bad and the boat rocky. There were several people turning green and grabbing buckets Nicholas included.I felt very sorry for him but he's so sweet he never coplained once but he did say he's never going on a boat again. Luke and Natalie did fine. After we got off the boat we started to drive the 300 miles to Minneapolis and took the wrong road twice! We finally made it about 9 pm I told Eric if we get sent home again I don't know if I'd be able to drive this trip again.
We are in a small room until this weekend when some families are leaving so I'll send my address and phone number when I know them. Luke is scheduled to be admitted on Monday if you could please pray for him.
We met another hurler family who's here for their yearly check up the little boy is 9 years old and 8 years post transplant and we thought that was really encouraging. He's 100% engrafted with unrelated doner. It helps to see success stories.
I'll keep you updated on Luke's progress. Please sign the guestbook if you want. love, Sheila.

Thursday, June 06, 2002 at 09:01 PM (CDT)

Well, a little change of plans(again). We don't have to have Luke to Minneapolis until Thursday so we will now leave tuesday. Once we get there Luke will under go two days of appointments and have the weekend off then go in early Monday(17th) morning to have his central line, mri, bone marrow harvest, spinal, and tubes in his ears. Chemo should start on tuesday or wednesday at the latest with the transplant being sometime 8 to 9 days later. If it's Gods will that's how it will all go if not I'll let you know. Nothing else is really different we're just hanging out waiting,waiting,waiting.
Please remember Riley in your prayers his 2nd transplant is Friday. Also, pray for Julia a little girl with hurlers who's been having a time of it lately. Pray for a peaceful summer for her and her family.
The lady who lost her son to hurlers in 1967 wants me to put her address here so all the hurler moms who read this and wants to write to her can. She'd be delighted.
Her name is Jane Turnbull,175 Laurel Dr. Battle Creek, Mi. 49017. Her son's name was Tommy. He lived to be almost 12. Although he was deaf, he never lost his sight.At first when I talked to her on the phone I thought she had the wrong disease because he lived so long but one look at his picture and I knew it was hurler.
Well, if nothing else changes I'll write more from Minneapolis next tuesday or wednesday. Thank you for all your prayers and support and for caring about Luke. Love, Sheila
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Sunday, June 02, 2002 at 05:25 PM (CDT)

We're still set to go on the 9th of June, we are leaving at 3am and should be at the Ronald McDonald house by supper. So far no chicken pox, Luke could possibly still break out until Wednesday but let's pray not. We've been keeping him very close to home the last three weeks. He's been playing outside alot since the weather has been so good and he goes to speech therepy once a week for an hour and says alot of new words. His speech therepist really seems to like him and we'll go once more before we leave. Health wise Luke's been the best he's ever been(Praise God).
The lady with the son who had hurlers over 30 years ago came over to see Luke. It was an emotional visit. She really wanted to hug Luke but he wouldn't but he did shake her hand. Natalie gave her a hug. I gave her a picture of Luke and she shared her pictures of her son and he looked just like another hurler cutie. If any other hurler moms would like to write her and send pictures of their kids she would love it. Just e-mail me and I'll send you her address. I am the only other person with a hurler child she'd ever heard about. She doesn't have computer access but Luke brought back alot memories and she needs more fellowship I think.
Write you more from Minneapolis next week. Thank You for your prayers and support. Love, Sheila.

Tuesday, May 21, 2002 at 11:53 AM (CDT)

Well, we'll be staying in Michigan another couple of weeks. Luke has once again been exposed to the chicken pox and we're going to wait until June 10th to go back to Minneapolis, it's not a huge delay so it's ok. Maybe we'll have some summer before we go. It's been so cold here. And the kids will be able to complete the school year.
Luke is still feeling really good and doing new things all the time (Praise God). I guess just pray he does not get the chicken pox and that he stays healthy otherwise. I'm going to try and keep him in speech therepy until we go but needless to say he won't be going anywhere else! All of our travel plans are otherwise the same.
Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. James 1:2-3 NLT.

Wednesday, May 15, 2002 at 08:17 AM (CDT)

So far Luke hasn't gotten the chicken pox! We're going to take the ferry across Lake Michigan that should make the trip to the twin Cities a little more enjoyable since we'll be avoiding Chicago! Luke continues to do good and will have some speech therepy before we go. We are continuing to pray and feel a great peace about the transplant. God has opened many doors and we're definatly closer to Him. Please keep Luke in your prayers and all the other Hurler children. And if your in Minneapolis this summer come and visit, the mall of America is there! Love, Sheila

Thursday, May 09, 2002 at 12:39 PM (CDT)

They called from Minneapolis and said Luke is scheduled to be admitted into the hospital on May 30th. The tenative date for transplant is June 10th or 11th. Nicholas is going to be the donor. Please keep him lifted up in prayer as he is doing really well, yesterday he said two new words and he's just been so happy. A real blessing.
I got an interesting call today from a woman who lives only 15 miles from my house but 35 years ago she had a son that had hurlers. She saw Luke's picture in the paper and really wants to meet him. Of course there wasn't a treatment for her son and she slowly lost him. Her pain could be felt even thru the phone, even after all those years. She was really excited there's some hope for Luke. She's going to bring some pictures of her boy when she comes over sometime next week. She couldn't believe she finally met someone who has the same thing, she went all those years and no one to identify with. I say thank God for the internet! I've met so many wonderful, helpful people. The first of which was Kristin Mattheson, she was so helpful. To do this totally alone and also lose your baby, that's just really sad. I hope Luke helps her in some small way, I'm sure Luke and her son resemble each other because they all have that hurler look. I'll let you know how it goes. Anyway, thanks for all your love, prayers and support. Love, Sheila.
s

Friday, May 03, 2002 at 08:07 PM (CDT)

They called us from infection control and said they don't think anyone was put at risk for chicken pox at the clinic nor at the Ronald McDonald House. We felt alot better about that. Natalie's case is so mild she only has 4 or 5 spots. Hopefully this means Luke won'tth get the pox.
We're scheduled to go back the day after Memorial Day. They did get the enzyme results on Nick and Natalie and they both are well in the normal range but Natalie has a little bit higher enzyme level. However, they don't believe Nick nor Natalie are hurler carriers and they haven't made a decision yet on who the donor will be, next week they will discuss it. please pray Luke stays healthy the next three weeks. He feels great right now. Praise God. Write more as things happen. Love, sheila.

Thursday, May 02, 2002 at 05:53 AM (CDT)

hello from Michigan! Natalie got the chicken pox and they sent us home. We have to wait four weeks to see if Luke's going to come down with them or not. He has been vaccinated so pray for him not to get the pox! and please pray for all the children at the house that were around Natalie that they do not expose their sick brothers or sisters in the hospital. Chicken pox is a major big deal when you haven't got an immune system.
Luke's tests that we were able to do all went well and they say he's ok for transplant. We pray he stays this healthy until we go back at the end of the month. Needless to say we were disappointed. Nicholas asked if we could get the same room at the house because it was so great.
please keep all these hurler babies in your prayers. Love, Sheila.

Tuesday, April 30, 2002 at 08:50 PM (CDT)

Today was a very busy day. First we went to the clinic for blood draws and they had a hard time getting Luke's because his veins were so small. Finally they got someone from pediatrics to come and try and she got it. The good thing was it wore Luke out so much that he slept while we were talking to the BMT doctor and we really got to concentrate on what he was saying. The other new thing is they decided to test both Nick and Natalie's enzyme levels to see which one has more since both are perfect matches, they may now decide on switching to Natalie. The labs went to Pennsylvania and will be back on Friday. They still did all the workup on Nick so he's all set to go as donor. Luke had his heart checked today also with ekg and echogram and it turned out fine. Tomorrow is pulmonary and eyes.
Tomorrow night we're going to Piper's church for supper and Wednesday service. It should be fun to meet people there. We're going to see if they would like to do a dinner at the RMH.
Eric's hip has been really bothering him the last 3 weeks so he's going to see a Dr about that tomorrow also. Hopefully it will be better before Luke goes in for transplant sometime next week.
Please continue to pray for Luke and a special prayer for Riley that donor cells will grow in abundance. Also for a little boy named Jake who's been sick for two years and is still on the bmt unit. Don't forget to sign the guestbook. And pray for Elliot who is home that he continues to do well. More tomorrow, Love, Sheila.

Monday, April 29, 2002 at 06:00 PM (CDT)

Today was an easy day for Luke, he had the same developmental test he had last time and we had a class on transplants. Tomorrow we see the transplant Dr. and Nick gets his physical. Nick had school here and he really likes it. There are two kids in his class but another is joining tomorrow. Great one on one! Luke feels fine. They have a train here at the house that he really likes to play with. When I was coming out of the hospital I saw Cj(another little boy with hurlers) and I got to meet his mom and dad. That was fun. Please pray for Riley he needs donor cells to grow quickly, they're going to wait two more weeks and if no donor cells he has to have another transplant! But I have faith that donor cells can grow. Eric went to get a pizza for dinner so I gotta go. Love, Sheila.,

Sunday, April 28, 2002 at 09:19 PM (CDT)

Hello from Minneapolis! The kids did really good in the car for 12 hours. The room at The Ronald McDonald House is wonderful. The kids have bunk beds which they love. Luke's tests begin tomorrow at 8am. Please pray for mercy and grace along this long and difficult journey for Luke. Write more tomorrow Love, Sheila

Friday, April 19, 2002 at 05:54 PM (CDT)

Tomorrow is a pancake breakfast for Luke and it's our daughter Natalie's 5th birthday so this weekend will be very busy. We have one more week at home before we go to Minneapolis and I feel like I can't get enough done. It still doesn't seem real how long I'll be gone. But Luke's the important thing right now. Please keep him in your prayers and the many others who have to deal with this nasty disease. Thank You, Sheila.

Thursday, April 18, 2002 at 08:03 PM (CDT)

People have been asking me to write something new so here it goes:
Luke is doing fine, he does something new everyday which is really good. We took him for occupational therapy and the therapist said his fine motor skills are at age level and we don't need to come back. The speech therapist gave us some ideas to get Luke to say two words together more often and give him the word for familiar everyday things if he doesn't have the word yet. Physical therapy also gave us some excercises to keep Luke from being so stiff expecially his fingers, shoulders and knees. Luke really enjoys doing these so that's good.
Because Luke's doing so well it will be hard to give him chemotherapy and radiation and make him really sick to get him better. I'm really counting on God to see us thru this.
Everything about going to Minneapolis is basically the same. We'll leave the end of the month, have a week of test for Luke and some for our older son, Nicholas , to make sure he's ok to be the donor and then hopefully get admitted to the hospital and start the chemotherapy process. Unless of course God has other plans.
In the meantime we've been getting ready to go and our community has supported us tremendously with bake sales, pancake breakfast, dinner and a concert. It's been wonderful, encouraging and unbelievable how much love and support we've gotten for our little guy. We are truly blessed. Thank you to everyone! I'll try and update more often God Bless. Sheila.
P.S. Please pray for Carley she's having some trouble with retaining fluid and she needs extra prayer. Also remember Cj,Riley, Morgan and Elliot.

Tuesday, March 26, 2002 at 07:29 AM (CST)

We have a date of April 29, 2002 to go to Minneapolis to start work up for bmt. They have chosen our older son, Nicholas, to be the donor.

Friday, March 22, 2002 at 06:08 PM (CST)

Luke DeVolder was born, at home, November 6, 1999. Shortly after his birth he had to be hospitalized for respiratory problems. The first year of his life he had at least five hospitalizations with lung related issues (including RSV). At two months old he also had bilateral hernia surgery. At the age of 1 Luke started to turn around health wise and could withstand a cold without ending up in the hospital. We really thought he was doing good except for a noticeable curve in his spine. When this was viewed by Luke's Pediatrician she seemed to think it was OK. Concerned, we returned 2 weeks later to have her look at it again and ended up seeing a neurosurgeon who wanted an MRI. During the physical (required in order to do the MRI) the physician said we really should see a genetic specialist. When I asked him what he was thinking may be wrong with Luke he showed me a picture in his medical book that looked exactly like my son and said "I think he may have Hurler Syndrome." Of course I had never heard of Hurlers before and had no idea what it meant. Immediately I went to web and looked up Hurlers where I proceeded to cry for two weeks, night and day. When we finally saw the genetic Dr. he confirmed (MPS-1) muccopolysaccaridosis, or otherwise known as Hurler Syndrome. Even before official lab work came back my husband cried which was weird for me because I'd never witnessed that before. We have now been referred to a hospital in Minneapolis where Luke will undergo a Bone Marrow transplant. Although the transplant is a risky treatment, it is the only treatment and the best chance at life for our precious little boy. After 8 days of chemo and 1 treatment of total body radiation, Luke will receive new bone marrow from either his brother or sister (both perfect 6:6 matches). The new marrow will contain the one enzyme Luke is missing and slow the storage process of the disease giving him the best chance at life that would otherwise be shortened if untreated. We will be updating this page often as transplant gets underway in late April, and we ask for your prayers during this journey. For more information on MPS please see the links below.

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