Isiah's Updates

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7/15/2008 - Isiah went to EMMC to get blood drawn to begin looking for a doner match.  Isiah was very brave, and his blood is on its way to Duke University Medical Center.

Fundraising Updates - There will be a bottle drive in Plymouth on July 19th.  A Multi-Family yard sale, 38 Elm Street Newport on August 2nd and 3rd.  Davis Family Gospel Concert, Calvary Baptist Church, Grove Street Newport, on September 27th 6:30 p.m. 

7/17/2008 - Isiah's family would like to thank all of the people who have been emailing with support, prayers, and donations since Isiah was on the Channel 5 News last night. Anyone who did not see the news can log onto the wabi website to view the newscast.

7/18/2008 - Jenni, Josh, Nana and Nany have been busy the past few days getting packed and ready for the journey with Isiah.  Isiah's Grandfather and Great-Grandfather are leaving in the morning to drive a car to North Carolina to leave there.  They will fly back to Maine on Monday. 

Family and friends are working diligently on fund raising events.  Isiah will need a very unique environment when he comes home to Maine after his treatments, so there is a lot of planning to be done to design the home environment Isiah needs to keep from getting any type of sickness or infection when he arrives home.

The outpouring of love and support from family, friends and community has been so comforting. 

7/19/2008 - Jenni, Josh, and Isiah want to thank Gilman Electric for their support.  Josh works at Gilman's, and his co-workers have rallied together in a short period of time to fund raise for Isiah's long medical journey.

Our entire family is so grateful to live in such a supportive community, and we will be able to show Isiah the pictures when he is bigger so he will know how much he is cared about and has been supported.

7/21/2008 - Isiah, Jenni, Josh, Nana and Nany are settling into the apartment.  It is very close to the hospital, so it will make it very nice for the many appointments Isiah has over the next two weeks.  He has a rigorous schedule of appointments with several different specialists.  We will update how his appointments are going.

Thank you to Isiah's Grandfather and Great Grandfather for bringing down a car for  us to use when we are here.  The hospital is close, but definitely not within walking distance.

7/23/2008 - Today was a very busy, exhausting day.  Isiah began with a full check up at Duke University Chilrens' Health Center.  The Doctors, Nurses and staff there are so nice and accommodating.  The Children's Health Center is amazing.

Isiah, then had to have his nasal passages checked out to make sure he is not coming down with any colds or viruses.  After that, we went back upstairs where Isiah had blood drawn.  They need a lot of blood, so they drew half today and will draw the rest on Friday.  He was so good, and the Phlebotomist was awesome.  She was so good with Isiah, and got a vein the first time.  Yeah!!!!

Next we had to take Isiah back downstairs to radiology to have a full body X-Ray.  He was not thrilled about being restrained.

Finally, we ended the day with Isiah having an eye exam.  He had to have his pupils dilated.  He was very good for that exam as well.  It was a very tiring day.

We will know more about a timeline for his procedures over the next week. We were told Isiah will most likely have to have his tonsils and adenoids removed before he can begin Chemotherapy.  Tentatively Chemo will begin August 19th.

After Isiah had his blood drawn, he went downstairs to the audiology department and had a hearing test.  He has some more fluid in his ears, and we will know within the next week or so if they will need to put tubes in his ears.

Jenni and Josh are doing an awesome job supporting Isiah and keeping up on all of the medical information.  There is a lot of information being thrown out there, but the staff at Duke is very supportive and informative.

7/25/2008 - It has been another very busy two days.  Isiah spent all day yesterday having cognitive testing done.  That went very well.  Isiah was so good during the entire testing process.

Today, Isiah had a lot more blood drawn, then he had a CT scan.  After that, he a full body X-Ray, then on to have an ultrasound of his back.  Finally, Isiah had an echocardiogram.The medical team is working hard to make sure Isiah is medically prepared to undergo chemotherapy and the transplant. 

7/27/2008 - Today we got together with the other two families who are at Duke with children who have been diagnosed with Hurler Syndrome.  Both families are so nice, and interestingly, Isiah, Alyssa and Logan will be the only three children on wing 5200 at Duke being treated for Hurler Syndrome at this time.

Both families are so nice, and it will be comforting to have other people to identify with while we are here.  Alyssa begins her chemotherapy tomorrow morning.  Please keep her in your prayers. 

7/29/2008 - Isiah started another very busy week of medicall appointments.  He began first thing Monday morning going to an Ear Nose and Throat specialist.  The special said he will need is adenoids out and tubes in his ears.  That is tentatively scheduled for next Tuesday.

After that, Isiah went for his first physical therapy session.  The therapist was very helpful and has given us strategies to do at home to keep Isiah strong at home and during his chemotherapy and transplant.

On Tuesday, Isiah had and EKG, a chest x-ray, a crying lung capacity study, a mucus withdrawal from his nose to check for bacteria and an ultrasound to confirm an inguinal hernia.

Isiah does have an inguinal hernia, and will have that operated on within the next few weeks, probably after his surgery for his adenoids and tubes. 

Isiah is being such a great patient.  He is still adjusting to North Carolina.  He definitely misses home.  We met three other post transplant Hurler children today.  It was so nice to see how well they are all doing. 

7/30/2008 - Isiah had to be put out to have an extensive MRI done this morning.  The doctors are testing him from head to toe to make sure his body is capable of handling the Chemotherapy and the transplant.  His testing is going well, and hopefully he will only need two surgeries before his transplant.  We haven't got the definite dates back for his surgeries, but we are anticipating some time next week.

Isiah continues to be a wonderful patient, but he is getting tired of getting his blood drawn.  We are hoping they took the last draw today before they put his permanent central line in.  Once his line is in, it won't be painful to draw his blood.

The search for a match continues, but when we met with the doctor this afternoon, he seemed very optimistic with some preliminary match possibilities. 

We are staying focused and busy down here, but miss everyone very much as well as the state of Maine.  Everyone at Duke has been so kind, professional and accommodating.  We certainly feel Isiah is getting the best care there is.

8/1/2008 - Isiah had an early morning at the hospital.  He had to be put under anesthesia to have a spinal tap and to have his eye pressure checked.

The results from his spinal tap were good news.  They indicated he will not need a shunt in is head.  This was such exciting news.  This will be one less hurdle Isiah would have to endure.  We have not gotten his results back from his eye pressure yet.

This afternoon we go to meet with one of the transplant doctors to discuss where he is on the timeline, and hopefully we will get some news on a donor.

Isiah continues to be an excellent patient, and is really doing well with his physical therapy back at the apartment.

We are thankful to everyone back home who continue to fund raise to help curb the major expenses of this journey

8/4/2008 - Isiah had a Dr. appointment with the Ear Nose & Throat specialist this morning.  He will be admitted early tomorrow morning to have tubes put in his ears and his adenoids removed.  If necessary, his tonsils will be removed also. 

This will require a two week recovery before he can have his central line put in and his inguinal hernia fixed.  Isiah's tentative timeline for Chemotherapy has been set to begin around the 20th of August. 

8/5/2008 - Isiah had surgery to remove his adenoids and have tubes put in his ears.  Fortunately Isiah did not have to have is tonsils removed.  This will definitely speed his recovery.

Isiah spent his first night on wing 5200, where he will stay during his Chemotherapy, transplant and recovery.  The wing is very nice, and the staff are very kind, compassionate and attentive. 

8/6/2008 - Isiah has recovered well from his surgery and is able to come back to the apartment today.  He is happy to be out of the hospital.  It is amazing how good  natured and happy he is considering he had surgery yesterday.

There have been five good cord blood matches found.  We are now waiting to hear if the necessary enzymes are in the matches and whether the blood is healthy.  We should have definite news about that next week. 

As of today, Isiah's timeline is as follows:  On Thursday, August 14, he will have his hernia repaired and his central lines put in.  He will have to heal from those procedures for a few days, and then he will begin his Chemotherapy on August 20th.  He will receive his transplant on the 29th of August, and then we will all pray very hard that his body accepts the transplant.  It will take 30 to 50 days to know definitely whether his body accepts the transplant.

If his body does accept, the Doctor told us he will still have several years of keeping a close watch on any chronic types of rejection that is treatable with steroids.  Again, please pray his body accepts fully with no complications.

We have been working very hard on sterile procedures and making sure we are keeping Isiah sheltered from any germs.  This is a critical, and the hospital personnel are very good about teaching us what needs to be done.

We have been talking with family and friends back home daily, and we know how hard everyone has been working with continued fund raising efforts, prayers and support.

8/11/2008 - Today was an education day for the caregivers while Isiah is in the hospital.  There is so much information to be aware of before the Chemotherapy and transplant begin.  Wednesday will be another day of education before Isiah has his surgery on Thursday.

Isiah is doing great, he is pulling himself up and getting into things.  He also likes to dance.  We will update again with more pictures  this week.

8/13/2008 - Friday night, August 15, Kevin Tozier, T & W Garage, will be driving a car in the Demolition Derby at the Skowhegan State Fair.  The car will be in Isiah's name, and any prizes won by his car will be donated to the Isiah Fund.

 Pictures of the derby will be posted after it takes place.

 Please pray that Isiah's surgeries go well tomorrow and that he has a speedy recovery.

8/14/2008 - Today was a rough day for all.  Isiah had three surgical procedures done, and he ended up in surgery longer than anticipated.  The surgeon had difficulty getting his central line in, but he was able to get both lines in.  Isiah's hernia was fixed, and he had an electroretinagram completed.

 Isiah has been very sleepy since surgery.  The surgeon had Isiah admitted for the night for observation because of the difficulty of getting his lines in.  Isiah has developed a temperature, so the doctor may need to put him on an antibiotic. 

 If Isiah has a good night, and his temperature stays down, he should be released tomorrow until he is admitted for his Chemotherapy and Transplant. 

8/15/2008 - Isiah's temperature went down last night, so he was able to come back to the apartment last night.  We have a difficult time calling the apartment home, because Maine is home to us.  His iron is low because they have taken so much blood.  If it goes any lower tomorrow, he will have to have a transfusion.  We take Isiah back to the hospital at 11:00 tomorrow to check his dressing and check his blood.

The puffiness in his eyes is much better this morning, and has smiled and been awake a little bit.  We hope he perks up and wants to play a little this afternoon.

We wish T & W good luck in the Demolition Derby tonight!!

8/16/2008 - Isiah's checkup went well today.  His central line looks good.  Isiah's iron is a little lower, but hopefully it won't drop any more.  He goes back to the hospital again tomorrow for another check up.

Nana has been working on making a band with a pouch to go around Isiah's chest in order to tuck his lines in the pouch.  We have been very concerned he will pull the lines out of his chest, and that would mean another surgery to reinsert them.  We went to a Bernina sewing shop in Carrabor (which is about 10 miles from where we are staying)  called Thimble Pleasures to investigate renting a sewing machine Nana could make the bands.

The owner and staff were so kind, when I explained why I wanted to rent a machine, they loaned it to me at no cost.  We have met the kindest, most compassionate people.  It does help to know there are a lot of wonderful people in this world. 

We'll send pictures as Nana creates his bands.  The nurse who checked his lines this morning loved the one he had on today.  It had tractors on it with his name embroidered on the front.  She thought it was quite a contraption. 

We want to thank Thimble Pleasures in Carraboro, NC for their donation and well wishes. 

Although Isiah's car didn't win the Demolition Derby at the Skowhegan Fair, he had quite a support group there, and it was nice to see pictures of the family together supporting our little Isiah.  We miss family and friends so much.

8/18/2008 - Isiah had a good weekend at the apartment, but his hemogloben levels got too low, so he had to have a blood transfusion today.  The transfusion took three hourse, and Isiah was and Angel during the process.  He is such a good baby.

 Jenni and Josh signed all of the consents for Isiah's treatment this morning.  The doctor spent a long time with us today answering any questions and going over all of the information. 

Tomorrow is the big day, Isiah gets admitted to Unit 5200 where he will stay until his treatment is complete and he is well enough to leave the hospital again.  We know this is the only way to save him and bring him home healthy, but it is very scary and emotionally taxing on everyone. 

We continue to be thankful for the continued communication with family back home.  It is comforting go hear from family and friends as well as read all of the comments in the guestbook.

We will continue to update Isiah's journey.

8/18/2008 - Please pray for Alyssa Louden and Logan Stout.  Both babies are also on 5200 with Isiah.  All three babies are receiving transplants for Hurler Syndrome.  Having their families for support has been very helpful.  Alyssa's website is www.alyssaloudenfund.com and Logan's website is www.loganjackstout.com

8/19/2008 - Isiah has been admitted to Unit 5200.  He has received anti-seizure medication already and will receive three more doses before his first chemotherapy session at 5:00 a.m.  He also received medication to help prevent naseau.

Isiah is getting used to his room and Jenni has everything in his room organized. We are praying his treatment isn't too difficult on him.

8/20/2008 - Isiah is now officially admitted to 5200 and has received his first chemotherapy treatment at 5:00 this morning.  He tolerated it well, and will have another dose at 11:00.  The medication they gave him to prevent seizures has wired him up, and he didn't sleep at all last night.

He was given Benadryl this morning to try to get him to sleep.  It did help some.  He is still checking out the wires and the equipment, so we hope once his curiosity curbs, he will relax more and rest.

8/21/2008 - Isiah is halfway through his second day of Chemotherapy.  He is beginning to loose his appetite, but he is supplemented intravenously.  Isiah developed an infection on his central line site, and has been put on another antibiotic to clear that up.  Isiah had an allergic reaction to the antibiotic, so he is on Benadryl. 

He continues to be a trooper.  At 11:00 p.m.  he will complete his second full day of Chemotherapy treatment.  We are counting the days down.  The Doctor told us that the more severe side effects of the Chemotherapy will not occur until five or six days after the Chemotherapy ends, so we are trying to stay rested and prepare ourselves to stay strong.

The staff on Unit 5200 couldn't be nicer, and we appreciate their expert care.  We will continue to update daily.

8/23/2008 - Isiah's last treatment of his first type of chemotherapy is at 11:00 p.m.  Tomorrow morning he begins four days of a chemotherapy that will be a bit tougher.  Isiah continues to be the so good and is taking everything in stride. 

Last night Jenni finally convinced him to keep his mask on so he could go out into the hall to play.  He was tickled to get outside of that room for a little while.  They cannot leave the wing because of the special filtering system, so getting into the hall was a special treat.

Grandpa and Ranky came to visit for a four day weekend.  It was so exciting to see them, and they have really had a good opportunity to see what it is like going through this journey.  Isiah was happy to see them.

Isiah has pretty much stopped eating, the Doctor said that is to be expected, and he will be supplemented through IVs.

8/25/2008 - Isiah is beginning to feel more effects of his chemotherapy.  He has completely stopped eating, and is having a hard time keeping down any oral medications.  He has been given more nauseau medications through his IVs, and hopefully this will help.

He had some medication for pain yesterday afternoon.  He has developed mucositis, and this is painful, so he will be kept comfortable through pain medications.  Isiah perked up after his pain medication yesterday. 

Last night Isiah had another blood transfusion.  He slept through that

8/26/2008 - Information about the golf tournament fundraiser has been confirmed.  Click here for more information.

8/26/2008 - Isiah is having a rougher day today.  It is the first day he has required pain medication to stay comfortable.  Fortunately, the medication is working so far, and it has allowed Isiah to rest comfortably.

Tonight will be difficult according to the Doctor, but hopefully the medications available will help ease Isiah's discomfort. 

Please click on the link on the home page if you are interested in participating in the fund raising golf tournament.

Alyssa is doing much better, and we are all so thankful it appears she is beginning to engraft. 

Logan is doing well also.  It is so nice to see Alyssa and Logan on the better end of their journey here.

8/27/2008 - Isiah has begun to break out in hives from the ATG medication he is currently on.  This medication is given to kill the T Cells in Isiah's body.  The hives indicate the medication is doing what it is supposed to do.  This is uncomfortable for Isiah, but he is being medicated to relieve the discomfort.

Today is his last day of chemotherapy!!!  We are so happy about that.  He has gotten a fever as well, which is also to be expected.  Isiah is being such a good baby during all of this.  If he doesn't feel like being bothered when a nurse comes in, he waves good bye to her when she comes in the door.  He hopes this will keep them from doing anything to him.

Alyssa was out walking the halls yesterday afternoon.  We were glad to see her on the upswing and feeling better.  Logan had a rougher night, and is receiving oxygen.  Please continue to pray for them when you are praying for Isiah.

8/28/2008 - Today seems to be a rougher day for Isiah.  His hives have gotten pretty severe, and he is retaining fluid.  The Doctors have medicated Isiah to relieve any discomfort from the hives.  Fortunately the medication is doing the trick.

Isiah will be put back on medication to manage the fluid.  The Doctors have told us that the hives are really positive news because they mean his body is doing what it is supposed to do in response to the ATG.

Today is Isiah's last dose of ATG, so he should bounce back within the next few days.  He is really doing very well considering all of the medications he has been on.  As of early this morning, Isiah has almost no immune system left, (his white blood count is down to .3)  We suspect it will be 0 by this evening.  Keeping him free of germ exposure will be crucial.

We hope everyone has a great time at the dinner and dance Friday night.  We wish we could be there

8/29/2008 - Transplant day has finally arrived!!  Isiah's blood pressure was a little high, so he had to be treated for that before his tranpslant began.  When he is in pain, his blood pressure goes up.  Also, we were told the preservatives in the transplant blood causes patient's blood pressure to rise, so Isiah will probably be on a few blood pressure medications.  We're not sure how long he will have to be on those meds.

Isiah was so cute.  He checked out the bag of stem cell blood like he was studying it.  The transplant actually has two phases.  The first phase, which went quickly (about 30 minutes) occurred around noon.  He got 80% of his transplant.  At 5:00 p.m. he will receive the other 20%, which has been treated to try to expedite the engraftment process.  That will only take a few minutes to administer.  The transplant makes Isiah smell like creamed corn, so the room will smell strongly of creamed corn for about 24 hours.

Now we have to sit back and wait.  The Doctor said it is typically 11 or 12 days before any signs of engraftment take place.  In the mean time, Isiah's reactions to the transplant will be monitored closely, and the nurses will do whatever necessary to keep him comfortable.

We will continue to work hard to make sure his environment is germ free.  He has no immune system right now and will not until his body engrafts.

We are so excited about the turn out for the dance tonight.  We all wish we could be there.  We hope everyone has a great time, and we will be thinking of you all.  Thank you again for all of your support.  It means so much and helps us get through each day away from home.

 Jenni said we must really be getting homesick  because the nurses are beginning to remind us of people back home. 

9/1/2008 - Isiah had a very good weekend after his transplant.  He has felt pretty good.  He is still having allergic reactions to the ATG and gets very itchy, but the Doctors hope that will subside within the next day or two.  They prepared Jenni yesterday that he will start feeling yucky within the next few days and that will last a few weeks.  Every day he still feels good is a day we celebrate.

We were so pleased to see everyone at the dance on the web cam.  It was so nice to see everyone.  Thank you to our family, friends and community for the outpouring of support and love.  We have been told the dance was a huge success and a good time was had by all. 

Dave, Laura and Alaina came to visit this weekend.  It was such a treat to see them all.  We have missed them so much.  Their visit didn't seem long enough, but we had a wonderful visit and got lots of hugs and kisses from Alaina.  It was so nice for Jenni and Laura to get to spend some time together, and Dave was such a big help with little projects at the apartment.  We miss everyone back home so much.

Isiah was tickled to see his aunt and uncle.  It is amazing how even babies as young as Isiah remember the people in their lives that love them, even if they haven't seen them for a while.  Isiah was not able to see Alaina, no one under the age of 18 is allowed on the unit.

We will continue to post everyone of Isiah's progress this week.  Please pray he makes it through the rough days comfortably.  His white blood count is currently 0, which means the treatments did what they were supposed to do.

Also, please continue to pray for Alyssa and Logan.  Alyssa is getting out and about more. It is nice to see her starting to feel better.  Little Logan is still not feeling well, and your prayers will make a difference.

Thank you all again for your continued love and support and all the work you did to make the benefit dinner and dance a success. 

9/3/2008 - Isiah is continuing to be a trooper.  Jenni finally went back to the apartment last night to try to get a good night's sleep.  Nana stayed with Isiah.  He was very sleepy because he was up all day.  He did have to stay on oxygen all night.  His levels were a little low, but a small bit of oxygen did the trick.  The doctor last night said it is probably the mucositis, but we're waiting for the day doctor to do rounds today and give us his opinion.

The emails from family and friends have been nice.  We appreciate hearing from everyone. 

9/3/2008 - Today was a rough day.  Isiah's hair began to fall out and Jenni had to shave it.  He looks so adorable, but it was sad to do.  There have been so many transitions since Isiah's diagnosis. 

9/4/2008 - Isiah had a good night last night.  He did not need oxygen.  His mucositis is a little worse, but that was anticipated.  He got up this morning and played for a while.  He did require a little bit of oxygen during his nap, but his vitals were great once he woke up. His levels are still 0, which is where they are supposed to be right now.

9/5/2008 - Isiah continues to be a trooper.  He is more tired today, but still is so good natured.  His White Blood Count is still 0, but we won't really start looking for any cell growth for 3 to 7 more days.  We are getting used to his new haircut.  It is more comfortable for him. When his hair began to fall out it got really itchy.

We had a wonderful meal two nights ago.  There is a lady who is part of an online scrap booking group with our Aunt Sherry, and she had a delicious meal delivered to the hospital.  It was awesome!!  We appreciated it so much. We didn't realize how much we missed a good meal until we got that one. 

Please pray for Isiah's cells to grow.  We are watching his lab work closely so we will update his progress.

 9/6/2008 - Isiah continues to be tough.  He is a little more tired, but he is still trying to play and pull himself up in the crib.  The mucositis has caused him to stop eating again.  He hasn't eaten for the last two days.  He is given nourishment through IVs, so he doesn't appear hungry.

We are praying that within the next few days, his white blood cells will begin to show signs of growing from the donor cells.  We will keep everyone posted and please pray for his cells to grow.

Little Logan is feeling better, and hopefully he will begin to engraft.  Alyssa had a rough day yesterday, and has been sent to PICU to get some help breathing.  Please pray for her too.

9/8/2008 - Isiah is still hanging tough.  He has not felt as well the last few days.  He has developed a temperature, he has a small ulcer on the roof of his mouth, and is in some discomfort.  The nurses keep him medicated so he can say comfortable.  Isiah continues to smile and flirt with the nurses through his discomfort.

Isiah's white blood count is still 0, but now that he is beginning to feel worse, we hope this is a sign he will begin engrafting soon.  We hope within the next 2 to 3 days, we will see some cells begin go grow.  Please continue to pray he engrafts.

There is a sweet lady who is part of the online scrap booking group our Aunt Sherry is part of.  She is creating the most beautiful scrapbook for Isiah.  We are so excited about it.  Also, that group has been lighting candles for Isiah all over the world.  They are such an awesome, caring group of people.  We are blessed to have been introduced to this group.  Thank you Sherry!

We are so happy for Logan and his family.  Please continue to pray for his continued recovery.  Alyssa has not been feeling well.  She has been transferred to ICU and is currently on a ventilator.  We miss her and her family on 5200.  She was doing a little better last night, and hopefully will return to this unit soon.

9/9/2008 - God is listening to our prayers.  Isiah's white blood count (I'll refer to it as WBC from now on)  is 0.3.  We are all so excited.  The doctors have told us it can fluxuate and go down again.  That is common, but we'll take what we can get and celebrate today's WBC. 

This is the process of engraftment blood counts:  A normal white blood count is 3.8-14 (thousand)

segs and bands are types of white blood cells, but they are baby cells that are maturing into adult WBC's.  They know cells are growing  by calculating the ANC, which is a formula that accounts for the immature (baby) white blood cells (segs and bands) and the total white blood cells that are growing.  This formula indicates the number of cells that are mature enough to fight infections.

A patient is considered engrafted when his/her ANC is greater than 500 for three CONSECUTIVE days.  Even after engraftment, the body's immune system is weak and the patient has to wear a mask in public. 

The following is the calculation:  Segs (plus)  bands  (times) WBC  (times)  1000  (divided by)  100

EXAMPLE:

Segs =  58

Bands  =8

WBC  = 0.8

58+8x0.8x1000=52800/100=528

(The information just provided was prepared by the PBMT Patient and Family Education Committee of Duke University Hospital)

Isiah is feeling yucky today.  His temperature is 102, he has a little rash on his feet and his little lips are quite swollen.  He is still smiling, though.  The only consolation is that these symptoms lead us to believe Isiah's body is trying to engraft.  The nurses are really awesome about making sure he stays comfortable.

Logan continues to be doing really well.  Alyssa is still in PICU on a ventilator.  Please continue to pray for their families too.

9/10/2008 - Isiah's WBC has gone up to 0.5. His ANC is 265. It is so exciting to see his levels rising.  We keep praying so hard they continue to climb. His ANC has to get up to 500 for 3 consecutive days to be considered engrafted.  His fever went up to 103 through the night, but he didn't require oxygen, so we were thrilled with that. 

We will spend today working really hard to keep Isiah comfortable.  We will update the site again after the Doctor comes in to visit this afternoon.

9/11/2008 - Isiah's WBC is 1.1 and his ANC is 495.  He is so close to 500!!!  We hope by tomorrow his ANC will be at 500 and will stay that way through the weekend.  We are so excited.  We have a lot more new questions to get clarification from the Doctors now that Isiah is close to engraftment. 

We won't know if the new medication is helping suppress the virus in Isiah's body until Monday or Tuesday.  We will post that information just as soon as we know anything.

Please pray for engraftment and that the medications keep the virus in check.

Logan continues to be doing well and Alyssa was doing a little better yesterday.  We are so pleased she is doing better.

9/12/2008 - Isiah's WBC is 2.8  and  is ANC  is 1218.  His cells are really growing!!!  Isiah required oxygen all last night.  Engrafting is very hard on their little bodies, and he needed a little extra boost last night.  Hopefully he will feel better today.

We will update as soon as we get more information from the doctor.

9/13/2008 - Isiah's WBC is 2.4  and his ANC is 1464.  If his ANC  stays above 500, Isiah will be engrafted.  We are so excited.  His lab work will come in at 2:00 a.m., so we are counting down the hours.

Isiah slept well last night even though he needed two extra dose of blood pressure medication under his tongue and had oxygen all night.  We are told this is to be expected because engrafting is such hard work on their little bodies. 

Jenni is beginning to learn Isiah's line care, and has changed his caps twice.  She is going to learn to change his dressing and draw his labs.  She is a natural at these things, and will be a pro in no time. 

We went to our first class yesterday that explains some of the discharge protocols.  It is amazing what his environment will need to be like.  He will be basically isolated for a year.  As we learn more, I will give some specifics about what his life will be like his first year after transplant.

9/15/2008 - HOORAY!!!  Isiah officially engrafted.  His WBC is 4.4 and his ANC is 2464.  We are so happy he engrafted so quickly.  Please pray the growing cells are donor cells.  We won't know that for sure until at least the end of the month.  We'll continue to update about that.

Isiah did not require oxygen last night, we hope this continues.  He is beginning to drink small amounts of milk again.  It is nice to see him want to drink.  Hopefully this will continue so he can depend less on IV nutrition.

Please continue to pray for Logan (who should be released from the hospital Friday) and Alyssa.  Alyssa is still in PICU.

9/15/2008 - Isiah's cells are continuing to grow!!  His WBC is 8.1 and his ANC is 4941.  He also made it through another night with no oxygen.  Isiah has played in his crib a little today.  Engrafting and growing cells is very hard work and Isiah still tires very easy.  Jenni is really doing an excellent job learning Isiah's medical care.  She will have no problem handling his care once he is discharged from the hospital.

The next phase at the hospital is to start weaning him off as many IV medications as possible.  Even though he will go back to the apartment with an IV, the Doctor wants him weaned off as many IV meds as possible and to have Isiah taking the majority of his medications by mouth. Many of the meds he is on, he will continue to take for at least a year post transplant, so he needs to be able to tolerate them orally.

9/16/2008 - Isiah's WBC today is 9.9, and he didn't require oxygen last night.  We can't calculate his segs and bands because now that he is engrafted and his ANC has gotten so high, they don't test them every day.  I'm thinking tomorrow or the next day we'll have another ANC calculation. 

Isiah is still having trouble keeping his morning oral blood pressure medication down.  He has to take one dose in the morning, and he still has a lot of mucus from the mucositis, so the medication has been causing him to vomit.  We hope that improves as the mucositis subsides. 

Right now the Doctors are concentrating on weaning Isiah from all the IV meds so he will be released to the apartment with as few IV meds as possible.  Isiah is an amazing baby.  He manages a smile even when he really feels yucky. 

9/17/2008 - Isiah is continuing to do well.  He did not require oxygen last night, and is tolerating the decrease in his medications.  The hardest medication for him is still the morning oral blood pressure medication.  He has a difficult time keeping it down.

We are hoping Isiah will get his appetite back soon.  He is still drinking very little.  IVs are taking care of his nutrition right now, but we're hoping he will want to eat more soon.

We should know more by tomorrow about how the cmv virus is growing.  We're hoping the antibiotic has begun to slow down the growth of that virus.

9/18/2008 - Isiah wasn't feeling great this morning.  He is running a little temperature and has been vomiting.  The nurse gave him some medication for his nausea, and it has helped.  His temperature is also dropping.

His WBC is still good.  We are waiting to get test results back about his CMV virus.  If the virus is continuing to multiply, they will change his antibiotic.

Isiah has been getting some wonderful birthday cards and gifts from the scrab booking friends of Aunt Sherry's.  These are the nicest people.  Jenni is saving all of the cards for Isiah's scrap book.  The clothes he got from Missouri were adorable and will be great for the cold Maine winter.  THANK YOU SCRAP BOOK GIRLS!!!  Your surprises and layouts brighten our days.

9/19/2008 - Isiah had a rough morning adjusting to his new antibiotic.  It made him sick.  He has been shaky and having some bone pain.  This afternoon was better.  We hope he is adjusting to the medication.  His WBC is still staying good.  We continue to pray the antibiotic stops the virus.

9/22/2008 - It has been a busy three days.  Isiah is feeling better.  His WBC is still 6.6 and his ANC is over 4000.  We are so pleased with that.  The new medication that is being used to treat the CMV virus Isiah has is beginning to work.  His levels are starting to go down.  That is good news.  He will be tested once a week to make sure the medication continues to work.

In order to be released, Isiah has to take more of his meds by mouth.  He should be taking all of the necessary oral medications by tomorrow.  The other issue that needs to be resolved is the need for Isiah to have oxygen at night.  He has been requiring oxygen the last two nights.  The doctor told us he needs to go three consecutive nights without oxygen before he can be released.  Isiah had a chest x-ray and that looked clear, so that was good news.

Uncle Chris, Auntie Jaime and Jadin came to visit this weekend.  It was so great to see them all.  Jenni, Chris and Jaime had a great time visiting, and we were all so excited to see our little red head, Jadin.  We have missed the family so much.  It was very hard to see them leave Monday morning.  It makes us miss home more, but we were so glad they came.

Isiah got his first taste of freedom from on Saturday.  He got to go outside and stroll around for the first time since he was admitted.  He was willing to wear the hard mask in order to get outside. 

He is going to get some 2 hour passes to leave the hospital this week to get prepared for being discharged.  It is exciting for Jenni to get some time with Isiah outside of that hospital room. 

Isiah had a wonderful first birthday party.  He turned one year old Monday.  5200 put on quite a nice birthday party.  Isiah had a wonderful time.  Thank you to everyone who has been sending cards, scrap book layouts and gifts for Isiah's birthday.  We had a nice celebration in spite of the circumstances.  It has been so nice hearing from everyone wishing Isiah well.

9/24/2008 - Isiah had a very good night.  He only required oxygen for 10 minutes.  We are hoping tonight he won't need any.  He got a four hour pass today.  We were all so excited to get a break from the hospital with Isiah.  He loved getting out of there and playing in the living room.

9/25/2008 - Isiah had a good night last night.  He did not require any oxygen.  He got another 4 hour pass from the hospital today.  Tomorrow afternoon his test results should be back that will let us know what percentage of Isiah's cells are donor and are his own.  The doctors would like to see it be over 90% donor cells.  Please pray this will be the case. 

Isiah has one more medication left to begin taking orally.  He will start that tomorrow.

We want to thank everyone back home again for all you are doing to support Isiah and his family through this difficult process. We  have also been so blessed to have support from all over the world.  We hear from people every day who are involved with the Scrap Book Girls with our Aunt Sherry.  We never realized what a process receiving a stem cell transplant was until we began the journey. 

9/26/2008 - We got the results of Isiah's test that tell us percentage of donor versus his own cells.  We were so excited and thankful to God that over 98% of Isiah's cells are donor cells.  The doctor told us that was awesome and exactly what they had hoped!!!!

We asked him if that meant he were less likely to suffer from Graft vs. Host Disease.  He said there is no correlation between that and Graft vs. Host Disease, so that will continued to be watched long term.

If Isiah has a good weekend, he will be discharged to the apartment on Monday.  We are so excited about that.  It will be a little scary at first because there will be a lot of home care to adjust to, even though Isiah will still have to go to the clinic every day. 

We can't wait for Isiah to have a more normal environment.

9/29/2008 - Isiah got released from the hospital today!!!!!  What a happy day.  This afternoon will be very busy.  We have to get everything unpacked, wait for Isiah's medical supplies to arrive from Duke Infustion and spend a few hours with the nurse who will help Jenni get Isiah's IV pumps set up and get her feeling comfortable with Isiah's IV care. 

We will update again tomorrow with pictures.

10/2/2008 - The first few days having Isiah released from the hospital have been very hectic.  Getting used to running his four separate IV pumps (which are running a total of 14 hours a day) and getting Isiah's oral medications on a routine have been very time consuming.

Every morning Jenni has to draw blood, then it has to be dropped off at the hospital in order to be tested before Isiah goes to the clinic for his daily check up.  If he needs hemoblobin or platlets, he has to get those infusions at the clinic.

We are trying to get Isiah to try to increase his eating so his IV feeding can decrease.  That is a challenge after Isiah not eating for so long, but he is working on it.

Isiah's cmv count is down to 345.  This is great.  It needs to be down to 0 for three consecutive weeks before he can be taken off the heavy duty medication that is so hard on his system, then he will be put back on another medication to try to keep the virus in check.  Isiah's cheeks are swelling because of the steriods he is on. He looks so cute.

We thank God each day Isiah shows no signs of Graft vs. Host Disease.

10/6/2008 - Isiah continues to be a trooper and is doing well being released from the hospital.  He is sleeping much better now that he has an opportunity to play on the floor like a toddlers should be able to do. 

We should know this afternoon or tomorrow morning about Isiah's cmv counts.  We continue to pray they are going down.

There was a fund raising golf tournament at J. W. Parks Golf Course in Pittsfield this past weekend.  There was an excellent turnout, and as always a tremendous amount of support from family, friends and community members.  It is so comforting to know how much people care and how many good people there are out there.  Kevin, Sherry, Eric, Jenn, Beulah, Harold and Serena worked so hard to make the event a success.

The UMO Black Bears Hockey Team gave Isiah a helmet signed by the team members.

Logan has been discharged form the hospital, we are so happy for Logan and his family!!  Alyssa is still being tough and fighting every step of the way.  Please continue to pray for their families.

10/8/2008 - The results from Isiah's CMV virsus indicate the medication is continuing to slow the virus.  His counts are below 100 now.  Hopefully they will be zero next week so Isiah can get off the Foscarnet and back on a medication less toxic to his system.  Isiah has a slight rash that is being treated with topical cream.  His body is doing a great job producing platelets and hemoglobin, and Isiah has not needed infusions since he has been discharged.  Please continue to pray the CMV virus goes to zero and Isiah continues to heal.

Also, please pray for Alyssa and her family.  It appears God has decided Alyssa is more needed with Him, and it will be a matter of a few days before she earns her Angel wings.  She has wonderful parents, and they will need our prayers.

10/9/2008 - Our little friend, Alyssa became an Angel last night.  Please pray for her family to lean on God to get them through their loss. 

10/10/2008 - Isiah is doing really well being released from the hospital.  It has lifted his spirits so much to be able to play and crawl around. 

Isiah began taking his cyclosporin by mouth, so he is down to three IV pumps rather than four.  That decreases his time on the pumps from 14 hours a day to 12 hours a day.  Today he stops taking methadone.  Jenni was really happy about that.  Hopefully tylenol will managae Isiah's pain. 

Isiah's blood work has been looking really good, and Jenni only has to draw labs on Monday, Wednesday and Fridays as long as it continues to look good.  If his appointments go well the next few days, Isiah will also only have to go to clinic Monday, Wednesday and Fridays.  Please continue to pray things keep going well. 

We are still hoping he will be off the Foscarnet and go back on a less toxic antibiotic in the next few weeks. 

Our hearts have been heavy the last few days after news of Alyssa's death.  We cannot imagine the pain her parents are going through.  Please continue to pray for them.

10/14/2008 - Isiah had a very good weekend.  His levels are looking quite good.  Now that he is on oral cyclosporin, they are still trying to get those levels adjusted, but his platlets, WBC and hemoglobin have been great.

Isiah is still having quite a bit of pain, so he continues to need pain meds. 

Isiah's family would like to thank THE LATE EDITION BAND for performing at the benefit supper held at the Masonic Lodge Hall in Newport Saturday evening.  The meal and entertainment were superb. 

Thank you so much to Kevin & Sherry Davis, Norma Leighton, and Ron and Carole Green for hosting the event.  Also, thank you to all of the volunteers for helping make the supper a success.  Family, friends and community members continue to be a great source of comfort to the family, and again, we know that support and prayers are why Isiah is making such a great recovery.  He is truly a miracle from God. 

10/15/2008 - Isiah's CMV count is now undetectable.  That is such great news!!!  If the counts stay down another week, Isiah will be taken off Foscarnet and put back on gainscylovir with hopes the virus does not resurface.  The gaincyclovir did not work intially, but hopefully now that Isiah has gotten stronger, the virus will remain dormant.

The Doctor continues to be very impressed with Isiah's progress.  Jenni has done an awesome job maintaining his IV care and Isiah's progress is evidence of that.   

10/21/2008 - Isiah is continuing to do great.  His WBC, platelets and hemoglobin are staying up and Isiah has still not needed transfusions of platelets or hemoglobin.  The doctors are thrilled with Isiah's progress.  He is beginning to eat a little more and still likes yogurts.  He also likes Dill pickles.

Isiah still has a rash on his belly, which the doctor doesn't seem overly concerned about.  Jenni continues to put the steriod cream on the rash and that seems to be keeping the rash under control.  If Isiah continues to do well, his double central line will be removed, and he will only have a single lumin.  Hopefully this will happen soon.  We will update as we know more.  The only drawback is Isiah will need to be put out for a very short time.  (We believe only a matter of minutes)

We will know about the cmv virus today and will update that information in the morning.

10/22/2008 - We have continued good news about the CMV virus.  The virus is still non-detectable.  The Foscarnet is begin lowered, and hopefully the virus will remain dormant so Isiah can completely get off that medication.  Isiah's lipids have been eliminated in hopes he will be more hungry and start to eat more. 

The doctor coninues to be pleased with Isiah's progress.  Hopefully Isiah will begin to eat enough so he doesn't need the TPN either.

10/27/2008 - Isiah has had a rough few days.  He has developed a fever, so the Doctor readmitted him to 5200 to try to find out the cause of the fever.  So far, Isiah's tests have come back normal, so he is having a CT Scan to try to see if he has a sinus infection.  We will update as soon as there is information about the CT Scan.  Isiah's temperature has stayed down today, so hopefully the broad spectrum antiobiotic he is on is taking care of the problem.

It was very difficult to come back to 5200, and in the same exact room.  The nurses continue to be wonderful.  Isiah is such a trooper, and hopefully if his tests come out good, he will be back at the apartment before the end of the week.

10/28/2008 - Isiah is still on 5200.  His CT Scan showed he has clogged sinuses, which probably means a sinus infection.  He will begin another antibiotic to specifically target that infection, so he will be in the hospital at least one more night and probably more. 

Two of the new pictures posted are of Isiah and one of his little friends, Andrea', who also has Hurler Syndrome.  We met Andrea' and her mother when we first arrived at Duke.  Her Mom has really been a great support.

I'll update again tomorrow about Isiah's progress.

10/29/2008 - We have great news!!!  Isiah is being released today.  We are all so excited.  Isiah hasn't eaten as well in the hospital.  He can't get down and play and it is frustrating for him.  He will got back to the apartment on three new oral antibiotics, but Isiah takes his medications great now.  He just knows what he has to do and it so cooperative.

Isiah is quite a flirt, and the nurses get a kick out of him.  The nurses and doctors are awesome, but we won't miss this place.

10/30/2008 - Isiah was so excited to be out of the hospital.  It is so evident that being in the hospital was very depressing for him.  He has been smiling and is taking a bottle again.  His temperature has stayed down, so the antibiotic is working.

Tomorrow morning Isiah will see a Pediatric ENT who will suction the mucous out of his sinuses.  This will not be a pleasant procedure for Isiah, but we have been assured The ENT is very proficient with this procedure.

We will send more photos tomorrow.

11/2/2008 - Isiah had a good weekend.  Although he could not go Trick or Treating, Isiah dressed up as Batman.  He was so cute, and we let him fly around the apartment in his costume.  He has been eating a little better.  He such a cooperative baby and is so good natured. 

Isiah is really getting around the apartment now.  It is nice to see him opening cupboards and spreading pots and pans around the kitchen. 

11/6/2008 - Isiah's clinic appointment went really well yesterday.  He is eating more, so finally he stopped losing weight and gained a little.  That was good news because they cut his TPN in half.  Hopefully it won't be long and he won't need the TPN any more.  Isiah is doing much better drinking formula and Pediasure, but we're still working really hard to get him to eat solid foods.  He is eating some yogurt and he likes to chew on pickles, but his repetoire of foods is minimal.  We will continue to work hard on that. 

He is talking a lot now and loves to dance.  If his bloodwork looks good tomorrow, on Tuesday, Isiah will have his double lumin removed and have only one central line left.  We hope his bloodwork indicates this will be possible because every line that is removed decreases risk of infections. 

11/12/2008 - Isiah has been doing really well since he has been discharged from the hospital.  He is being taken off the rest of his TPN today.  Hopefully Isiah will eat enough on his own to stay off the TPN.  He has started to want to eat more.  Isiah is learning and changing every day.  It is amazing how well he bounces back.

We continue to pray Isiah does well enough to come home to Maine before Christmas.  This is not a definite, but it is possible if there are no setbacks or bumps in the road.  Isiah continues to be good natured and curious.  God has blessed us.

11/17/2008 - Isiah had a good visit to the clinic today.  Everything continues to look good.  They are going to try to start weaning Isiah's steriods.  Hopefully that won't supress his appetite.  Isiah goes back to clinic on Wednesday.  He will see his transplant doctor, so hopefully there will be more information to report. 

Jenni didn't want any mistaking which central line for the doctor to remove, so she put a label on the line that was not to be removed.  Always better to be safe.