History

Wednesday, May 10, 2006 3:05 PM CDT

Hi everyone, I guess it is about time for another update. First Justin had a very important day on Sunday, it was his first Communion. He was so excited to finally recieve Jesus, not to mention he loved his new suit that he picked out. We had a party for him after Church and he had fun. Oh yea I forgot to mention that he also had a fever on the day of his first Communion. He has had a cold and a sore throat for a few days so I knew the fever must be from that so I didn't take him into the hospital as we are supposed to with a fever. Justin seems to be doing well now so I am hopping that he is recovering on his own. Which leads me to the medical aspect of Justin's life he has been doing great, so great infact that he will be going in for surgery to have his central line removed as he does not need it for all of the blood draws and all of the i.v.s that he needed for the past two years. This is truelly like his last big step to take.

With Love and Prayers to all of those who have helped us through this with your prayers and thoughts for Justin, We truely thank you.

Wednesday, March 15, 2006 3:13 PM CST

Thanks for all the prayers! Justin's bile drain is now gone and he is on the road to a complete recovery. Justin is back in school full time after 2 1/2yrs. Justin was so excited when he returned from surgery, he said that he must be dreaming.

I can't thank everyone enough for all the prayers not only for Justin but for the rest of us. I know that it was those prayers that kept us going and let me stay strong for Justin. I feel that God has special plans for Justin to bring him back to us from all the horrible pain and suffering he went through.

Thank you and may God continue to Bless each and everyone of you!!!

Wednesday, March 8, 2006 10:29 AM CST

Hi everyone, thanks for checking on Justin. Tomorrow is the day that Justin is going in for surgery and we are hoping that this drain will be taken out. If so this could mean that Justin will be on his way back to being a normal little boy with normal health problems (that sounds so good).

I also want to ask for prayers for my Aunt Cheryl as she is also going in for surgery tomorrow because of cancer. I pray that in both cases the doctors will be successful in what they need to do.

Thanks for all the prayers!!! GOD BLESS ALL!!!

Wednesday, March 1, 2006 1:14 PM CST

Hi everyone, things on this end are going well. Justin tried to get back to school again, but like last time he was hit with a virus of some sort that attacked his liver and he ended up in the hospital for six days. Although this time when he was in they put him through his bile drain surgery and came back with good news. They think that maybe in another week he may be able to have this drain removed from his liver, bile duct and out of his stomach. He is so excited because if this happens he will be able to go swimming after 2 years. The Bone Marrow Transplant doctors told me that this drain issue is the only thing holding Justin back from complete health. So once again I am asking for prayers for good news.

Tuesday, January 17, 2006 5:13 PM CST

Justin had a wonderful hunting trip last week. We arrived in Texas and he went hunting right away. Each day Justin was able to hunt a different animal. On Monday Justin shot a Fallow buck, on Tuesday he shot a Corsican ram, on Wednesday he shot a wild boar, on Thursday he shot a whitetail dear. When he wasnt hunting we were all enjoying the seanery at the ranch.

Right now he is in the hospital but it is just precautionary as he just had his bile drain changed and they want to make sure there are not going to be any fevers like last time. Right now I don't have any information on when the drain comes out but I hope we get some sort of news tommarow.

GOD BLESS ALL!!!
Thanks for the continued prayers!!!

Friday, December 30, 2005 8:42 AM CST

Quick update we have been at clinic twice this week, we are not used to this as we have been coming once every two to three weeks. There are still some stomach issues, like cramping and vomiting and just not eating well. I will have to barrow a camera to put pictures on the site to show how Justin has lost so much of his weight. We are supposed to leave for our hunting on the 9th of January we are hoping this will still happen.

We hope everyone had a very merry Christmas and may God give all a Blessed New Year.

Friday, December 16, 2005 1:34 PM CST

Hi everyone I hope all is going well. Justin is doing ok, just having some stomach issues still, he is not eating well and is losing alot of weight. I will make this short as I am substitute teaching right now. I just wanted to thank everyone for the prayers and gifts and cards sent to Justin. I hope we can keep Justin out of the hospital this Christmass break. My prayer for each of you is that you have a very merry Christmass and a happy New Year!!

GOD BLESS ALL!!!!!

Saturday, December 3, 2005 8:14 AM CST

Guess what, I think we get to go home today. They said if no fevers than today is the day, and we havn't had a fever in 48 hours. There was a concern that the skin around the drain tube looked a little infected. Since Justin is on antibiotics it should resolve in time(I hope).

I was also told be Dr. Yanik that the blood bank called him the other day and they were very excited that it was the first time they did not see any fighting between cells in Justin's blood. This is great news they think that his last obsticle in the road to recovery is this bile drain.

I can't thank all of you enough for all the prayers that has helped us come this far, please continue to pray for this last problem.

Thursday, December 1, 2005 11:43 AM CST

Hi everyone! Yes Justin is back in the hospital. I will start by saying that Justin did get over his cough and was doing well. Then he had to go in for what we thought was going to be outpatient surgery on Tuesday. After surgery he was doing great so we went for our doctor's appointment which was scheuled for that afternoon. At the appointment he started to get pain and chills, which chills for Justin always means a fever. So here we are

The interventional radiology doctor told us there would probably be pain because they put in a larger tube which was difficult to place. We were also told that this was Justin's last hope to fix this small bile duct that is causing all these problems. The next step is to go in and have the small intestine pulled up to make a new bile duct.
So please pray this works for him.

Monday, November 21, 2005 12:17 AM CST

Hi everyone Justin has been out of the hospital for 6 days now he is doing well. I have been told that he could hang on to this cough for more than a month or two (I hope not).

We have had to postpone our hunting trip to Texas until he is feeling better. Dad is trying to make up by taking Justin out hunting from his tree fort, I think it is working.

We want to wish everyone a blessed Thanksgiving. Justin can't wait to eat grandmas turkey dinner.

Thanks again for all the prayers.

Sunday, November 13, 2005 6:58 PM CST

Well Justin is still in the hospital, what we thought was going to be a short stay may be a little longer. Justin has parainfluenza or better known as croop. Justin didn't have much of a cough when we were admitted but each day it gets worse. His chest x-ray was a little cloudy upon arrival and because of that they need to keep a close eye on him. The one thing we fear when Justin gets sick is that his blood counts will take a hit and go down. This did happen and he had to recieve a nupegen shot to help the white cells grow. He responded very well and the white count is doing just fine now. This is the first shot he has had in a couple of months now and I hope it will be the last. The rest of the counts went down as well but we just need to pray that he can recover on his own.

Yes we had to canceal Justin's hunting trip to Texas, but we are hoping that we will be able to reschedual at a later date. All I can say is this kid is amazing. After telling him we had to canceal the trip one tear rolled down his cheek and then he was fine. God truly has blessed Justin with patients and understanding, and God has blessed us with this wonderful little guy. It has been a very very long time since Justin or any of us have had a vacation so it was a big let down to all of us.

Once again thanks for all the prayers we couldn't do it without them! GOD BLESS ALL!!!

Thursday, November 10, 2005 11:43 AM CST

Hi everyone I guess all I can say is no news is good news as I do most of my updates in the hospital. If you have not guessed by now, yes Justin is in the hospital. Justin has a fever with a soar throat and cough. I guess that is to be expected now that he is back at school full time for the last two weeks.

Overall Justin has been doing great over the last couple of months. His blood work has all been normal and until now we have not had many illnesses. The only problem is still that darn external bile drain, and we have no idea when that can come out.

We are hoping that this is a short stay as Justin Mom Dad and Ashley are supposed to leave for Texas an Sunday afternoon. This is a hunting trip for Justin and he is very excited about it.

Thanks for all the prayers, GOD BLESS ALL!!!

Thursday, September 1, 2005 8:43 AM CDT

Well we have been here nine days now, it took awhile but he has been fever free for about 36 hours. I think they may talk about letting us go tomarrow if there are no more fevers. We really did not find out what the fevers were from. There is a possability that the bile drain may have been plugged with a stone, which could have caused fevers.
Two days ago Justin went back into the O.R for a new bile drain to be placed, while placing that drain they saw a stone move through but they are not sure if it had things plugged. I am told that things went well they were able to balloon the duct open more, but there is still no concreat word on how much longer he will have to have this drain in. Justin would love to get this drain out so he can go swimming again after two years of no swimming. This may not seem like a big deal but to a kid who was just learning how to swimm two years ago it has been one of the hardest things for him because he loved swimming.
GOD BLESS ALL!!!

Thanks for the prayers!

P.S. HAPPY BIRTHDAY TO OUR WACKY NEIGHBOR MICHAEL WE LOVE YOU!!!

Friday, August 26, 2005 7:30 AM CDT

The new update starts with Justin is back in the hospital. This time he is here because he is sick with a fever, stomach pain and hedaches. Even though he has been here alot, it just seems like it has been awhile since he was really sick. Justin has been running high fevers since Tuesday, and headaches since Saturday. The docs are not sure what may be going on, he has had several ct scans and a mri to rule out fungas in the lungs stomach and brain, so far those results have been good. Justin is now on three very strong antibiotics to try and knock out any bug that might be there. Please pray that these meds work and that the fevers may go away soon I hate to see him this sick.

Thanks for all the words of support here on line.

Justin loves to get mail the address here is

Justin Bradford
F7689 CS Mott Children's Hospital
1500 E Medical Center Dr.
Ann Arbor, Mi 48109-0246

or the home address is Justin Bradford
2528 Baldwin Rd.
Lapeer, Mi 48446

May GOD BLESS ALL!!!!

Saturday, August 13, 2005 4:37 PM CDT

Hi everyone! I have tried to update a few times and each time I have lost the info, sorry to those who are still signing in to check on Justin. Things have been going ok, yes just ok. Justin has been in and out of the hospital getting checks and changes on his bile drain in his stomach, it has caused some headaches I can't wait to get rid of it. Right now Justin is battling what the doctors think is cellulitis in his feet they are all swollen and bruised and very painfull he is having a hard time walking. We have him on IV meds at home and have had to travel to Ann Arbor 4 times this week alone.

We found out awhile ago that Justin lost some of his donor count while going through the Campath (chemo type drug). This means that some of Justin's own blood has fought to come back, although not much. We can only pray now that he will loose no more of the donor count as this is what keeps Justin's ALD stopped.

Now for the good news Justin's blood counts have all been in the normal range for the last two weeks. We have not seen this in over a year. YEA!!!

Please pray for the donor counts! May God Bless All!!!

Thanks for all the support

Thursday, June 23, 2005 1:13 PM CDT

Hi everyone! I hope all are having a good summer so far. It is hard on Justin to have to wear his mask all the time while outside but he doesn't complain. Justin is having fun watching his dad build a tree house for him out back in our woods, he calls it a tree fort but I think him and dad have made a glorified dear hunting condo. Justin is also enjoying alot of fishing with dad and grandpa, but he did tell me that he can't wait to bait his own hook.

Now to the medical end of things. We saw three weeks of good count's where we only had to come in once a week, but that didn't last to long we are now back to coming back three days a week. The doctor wants to take Justin off all his immune suppression for the next 5 days to see what might happen, although he tells me it might be a gutsy move, so maybe we can all pray that this may a good move. The next step will be more campath which is the chemo like med used to kill off his t-cells. We saw a lot of problems with this and hope we don't have to use it again.

Thanks for the continued prayers. GOD BLESS ALL!!!!

Tuesday, May 31, 2005 11:30 AM CDT

Hi everyone hope your vacation was good. Justin had fun watching his dad build him a tree fort. I just want to give a short update because Justin goes in the hospital tomarrow for three days to have a study done on his billiary drain to see if things are flowing correctly. We will be admitted tomarrow to make sure his blood counts are good enough for surgery. The surgery will be on thursday and then he will stay overnight to make sure there were no complications due to the study. Other than that Justin is feeling great and his counts are doing well. As a matter of fact it has been one week and one day since we have been back to see the docs. I will end by saying thanks for the prayers and GOD BLESS ALL!!!!

Monday, May 16, 2005 6:20 AM CDT

OK Justin is now home and doing well. We found out that he had an intestinal problem from all the antibiotics he was on. The meds killed off all the good flora of the stomach as well as the bad so he had nothing to fight this particular bacteria. They are hoping that this is where some of the recent stomach pain and fevers are comming from.

Justin is almost off his steriods which has caused all the weight gain, and we are starting to see a slow weight loss. Now we just need to work on his strength as he is very weak from all the inactivity of the hospital and all the weight. The steriods have caused hip problems as well, which has caused him to need a wheele chair for any distance walking.

I am hoping and praying that Justin may now get to see an upward climbe to good health. Although he still has his drain in the bile duct which will stay in for at least another 6 weeks which means there will be no swimming as long as that drain is in and that is one thing he really wants to do. The drain doesn't seem to bother him it comes out his stomach just to the right of the belly button.

Please pray with me for this climbe to happen. GOD BLESS ALL!!!

Wednesday, May 11, 2005 4:35 PM CDT

Well where do I start its been 1 month and we are still here in the hospital. This has turned out to be our longest stay, even longer than the transplant itself 1 year and 5 1/2 months ago. Justin has had problems with stomach pain and nausea. We have actually been released but had to come back within 15 hours because of pain. He still has the bile drain in so tommarow they will go in the tube to see if everything is still draining good. They are also going to do a ct scan of the abdomn to see if there is any visible problems. The thought of the bmt docs is that eventhough the cmv viruse is gone from the blood stream it is possible that the cmv of the stomach that they biopsyed 3 weeks ago is still preasent and causing the pain.

Justin has been a real trooper during all of this but just the other day he said to me "I can't wait untill I feel better again" that is the first time he has ever said something like that and I felt so bad for him. So please keep him in your prayers. GOD BLESS ALL!!

Saturday, April 23, 2005 6:44 PM CDT

Sorry for no update Justin has been through alot since the last update where do I start? The pain from one surgery led to another surgery, the doctors decided Justin has had a very sick gallbladder and it needed to come out. So on wednesday they took him to the o.r. again and this time took his galbladder out and did more cleaning in the liver and the bile duct. Justin was taken to the icu after surgery and had to remain on the venalator overnight. ( That was a hard one for Mike and I because it was two years and 8 months ago Michael passed away on the vent.) Justin was wide awake for a lot of this time and I am sure very scared but we tried to keep him informed about what was going on and he did great. Justin is still in a lot of pain and on a continuous drip of pain medication. Some of Justin's labs have been doing alot better since this surgery, so we are hoping this takes care of the pain in the belly and liver problems. Now we are watching to see if he gets an infection, they say since his immune system is so low an infection could be dangerous but they have him on 4 different antibiotics to try and ward this off. Although he has been running fevers often they tend to go away within hours and all the blood cultures have come back negative.

On the bright side Justin's cmv viruse counts seem to be comming down. We hope this will continue to fall untill we see negative results.

I still ask for your prayers as he has alot of healing to do. GOD BLESS ALL!!

Sunday, April 17, 2005 10:42 AM CDT

Well Justin made it through surgery ok, just in a lot of pain. There is several reasons for the pain number 1 being he has pancreatites due to the invasion of his stomach. Number 2 being his gallbladder is also enlarged due to stones and sludge in there, which may have to come out soon. Number 3 is alot of air was put in the small intestine to open it up for the scope which has caused severe gas cramps. Number 4 would be Justin has not been able to eat anything except a half of a sandwich in the last 5 days and he is starving. Number 5 being they took a couple of biopseys from his stomach. Right now Justin is on a pump which he can give his own pain medication as needed. Now the docs are just watching how things go and trying to get him stable enough to go and have the galbladder out. I hate seeing him in so much pain, but the one thing I can say is he is the toughest kid around.

Thanks for the prayers. I know God must have special plans for Justin in the future.

Friday, April 15, 2005 6:54 AM CDT

Hello everyone! Justin made it from Easter weekend untill now staying away from the hospital. Now he is back in. This time we had to bring him by ambulance due to a simple bloody nose. Justin started out with a bloody nose but then proceeded to start vomiting large amounts of blood which for lack of a better term "freaked us out".

Let me start by going over the last week Justin's cmv counts have continued to rise so they changed his medication for it to one that can be dangerous to the kidneys so we knew to push the fluids as to ward off kidney failur. Justin has also been having bad stomach pain at night so I took him into clinic on wednesday for an unscheduled appointment. They did blood work and saw his liver function test were sky high so they schedualed him to come back the following day for Ultrasound and ct scan of the abdomen. The thought was maybe the cmv virus that he has been battling is now attacking the liver. Well no sooner did we get home from clinic and he started this bloody nose which turned into vomiting blood. When we finally arrived at the er Justin was given some test and then sent to pedeatric ICU so he could be moniterd all night. The ENT doctors came and had to cauterize and pack Justin's nose to stop the bleeding at 5:00 in the morning. They then sent us up to the regular unit when they felt he was out of danger. After hearing about the stomach pain the gi doctors came up and reviewed the ct scan and the ultrasound and told us Justin needs to have an operation done on his liver to unclog it because that is what is causing all his pain. So here is the real reson for the update PLEASE KEEP HIM IN YOUR PRAYERS TODAY AS HE GOES THROUGH SURGERY!!! This is scary because he has low platletts and hemaglobin. Thank you!!

Monday, March 28, 2005 2:26 PM CST

OK here is a quick update, I spoke to soon and Justin has had to spend the last three days in the hospital. Although they did give us a pass to go home for Easter dinner at Grandma's and Grandpa's. We recieved a call from the University of Michigan and we know that always means trouble, that was on Saturday. The doctor told me that Justin's CMV virus has become positive and he has to be treated in the hospital. CMV is one of the things they were worried about when they gave him the campath three weeks ago. I just hope they can knock it back down before it causes any problems in the eyes or lungs or any of the other places it can hit. Justin battled CMV for about 4 months during transplant back in Minnisota, I hope it will not take that long this time because this means iv medications at home. Other than that things are going good.

Once again thanks for the prayers and GOD BLESS ALL!!!

Wednesday, March 23, 2005 11:56 AM CST

Hi everyone! Thanks for all the prayers! Justin has been out of the hospital now for two weeks. This is the first time that has happened in two months (I guess I should find wood to knock on). Justin recieved his chemo treatment two weeks ago and we think we are seeing some good results. First the platletts that he was getting everyother day, he has not needed in 6 days YEA! The nuepegen shots that he was getting every day to help make new white cells, he has not needed for 4 days now. The only confusing thing at this point is his hemaglobin is still going down although this will be the first tanfusion in two weeks. This is not bad seeing as he was needing it every 4 days before. I hope it will just take some more time but turn around for good

We continue to ask God to heal him accourding to his will and in his time, and to help us be patient about it.

Thanks to all and as always GOD BLESS ALL!!!

Tuesday, March 1, 2005 12:04 AM CST

I would like to start by thanking Lauren for the wonderful bennifet she put on Saturday night. It was such a success that she raised just over 10,000 dollars for the ALD foundation. Imagine a senior in high school with lots of love in her heart and ambition to match few others did this to help fight ALD.

Now for Justin he has been in the hospital for most of the last 3 weeks. He was running fevers and having alot of stomach pain with vomiting. Although nothing was found the fevers have been gone for three days now. The bad thing is they had to put him back up on steriods again because they thought maybe they had come down to fast. Eventhough he is back on steriods they are going to start the new med to try and kill off all of his remaining cells that are causting most of his problems. Tomorrow he is going down to the operating room to do another bone marrow biopsy.

Our stay in the hospital depends on a few things first they need to do some more test to make sure he does not carry some kind of infection as he will have no white count to fight off anything. It will also depend on how well he does with the administration of this drug and how well he starts to bounce back. So once again I know I don't need to ask but please keep praying.

Once again thank you Lauren!!!

GOD BLESS ALL!!!

Thursday, February 17, 2005 7:36 AM CST

I am very sorry for not updating lately. My computer has been down. Since my last update Justin has been in and out of the hospital. He is in right now due to a fever. We are hoping that this is a short stay, as next week he may be admitted for a long period of time due to a medication that they are going to put him on to get rid of the rest of his cells which is causing the Hemalitic Anemia. We are asking for your prayers once again that this will take care of his problems without bringing on any additional problems.

Also I would like to inform you of a benefit that my neighbor is doing for the ALD foundation. Ever since Michael was diagnosed with ALD, my neighbor Lauren, who is a senior at Lapeer East High School,has always said she wanted to do whatever she could to help stop this disease. So she has organized a benefit for February 26, 2005 at the Metamora Lions Hall. There will be a dinner and a show which is called Lapeer East Idol. There also will be a raffle and a couple of special surprises. Please if you have the time could you help support Lauren and the Ald foundation by attending the benefit. Tickets are $15.00 for the dinner and the show. Please contact Lauren or Lynette Furneaux at (810) 664-7795 for tickets or information. All proceeds go to the ALD foundation for futher research so that someday they may find a cure so that no other families will have to go through what we have gone through.

Thank you and remember to keep Justin in your prayers. God Bless You

Saturday, January 22, 2005 6:16 PM CST

Hi everyone guess where we are, not at home and not at clinic yep you guessed it Justin is back in the hospital. He landed here with a fever on friday. We had to go through the ER and that took forever. I think it was about 3:00 am when we finally came up to a room. Then we had to wait for the doc's here to check him out and ask all the same questions that the ER docs did. The fever has been gone now for about 15 hours but we still have to stay untill at least monday. Truthfully I didn't mind comeing because I was worried about his platlets going to low, even though I was told by the doc at clinic not to worry. Guess what? Justin recieved platlets soon after we arrieved even though I was told he could wait untill monday at clinic when we were in on thursday. The doc's put Justin on some oxeygen because his O2 stats went down to 86 when he was sleeping. They say this is due to all the weight gain and he probobly does this everynight. Now they want to do a sleep study on him and put him on oxygen at night. I think that's about it for now I despertly need some sleep tonight so I think I will sign off but not before asking to keep the prayers going. GOD BLESS ALL!!

Also say a prayer for A family that I have met here at the hospital and clinic who just lost their 14 year old son to cancer this past week.

Thursday, January 20, 2005 1:19 PM CST

Hi we are at clinic again and recieving platlets. We sent the blood samples that had all the cells seperated, out to minnasota for donor testing. The docs are hoping that this will give them an idea on how to treat Justin. In the meantime Justin gets platlets about every three days, red cells about once a week and nuepagen shots everyday. His poor marrow doesn't know what to work on next, it seems that it is only capable of doing one job and not the five it needs to do. Please keep praying for Justin and his donor counts, even for the doc's that they are led in the right direction. Thanks and GOD BLESS ALL!!!

Monday, January 10, 2005 3:06 PM CST

Hi everyone we are at clinic again it seems that this has become our secound home. Justin just loves it here because he gets so much attention from all the nurses, although I think he would like to be back at school also. We still have no results on the platlet study they did last week because it needed to be repeated this week. It is looking like the spleen and liver are both braking down platlets. So once again we are here for platlets and for the study. I hate not having any news to update at this time but it just seems that the last almost 4 yrs of our lives have been spent praying and waiting to see what is going to happen next. I once again thank everyone for the prayers!

GOD BLESS ALL!!!

Thursday, January 6, 2005 8:21 AM CST

Hi everyone! Justin is at clinic right now and has actually been here everyday this week. They are running a platlette survival study, this is an injection of radiate platletts and then a scan of his body for three days in a row to see where these platletts are going. I think the hopes are that his spleen has gone bad and are destroying these platletts and white cells and hemaglobin, this can be taken care of by removing the spleen. The one thing we are praying it is not is a bad liver which could do the samething, but cannot be fixed. So I am asking for the prayers again PLEASE! I am hoping that since the test is over I might get results today. We also sent out another donor count for the blood from the arm. Now the donor count from the bone marrow has been 100% but the donor count from the blood stream has been 94% but with his t-cell problem we are praying that that isn't changing.

Please keep the prayers going. GOD BLESS ALL!!!

Thursday, December 30, 2004 11:59 AM CST

well here I go. First sorry for no updates, our computer has been down for almost a month. We are at clinic useing their computer. Justin is recieving blood and platletts along with the new medication. This new med is considered like a chemo, it is suppose to supress Justin's T-cells, which are causing all the problems. But in killing his T-Cells we will also be killing the donor's T-Cells,which is not good. Right now we are at clinic three days a week, which makes life hectic.

We had a good Christmas, a friend finally got Justin a deer the day after Christmas, so now he is anxiously waiting to process it with Dad.
Please keep Justin in your prayers, and God Bless All.

Thursday, December 2, 2004 2:47 PM CST

Hi everyone Justin went to clinic yesterday and as always one count was stable and one count was bottomed out. The hemaglobin was stable but the absolute neutrophil was at zero so back on the shots to boost what is part of the immune system. We go back tomarrow to see if it has helped. The doc's have no idea why this is happening because this is one count that has been fairly stable untill recently. The doctor's are all going to a hematology convention this weekend and are hoping to find some answers for us.

Meanwhile Justin is still looking through the catalogs to put in his list for Santa. Speaking of Santa Justin gets to go on a makebelieve visit to the north pole next wednesday. We go down to metro airport and board a plane with all the shades pulled and go to the north pole(just another terminal that is decorated) He will get to have lunch on the plane and meet santa, he is very excited I hope to get lots of pictures to share.

God Bless All!!!

Wednesday, November 24, 2004 5:29 AM CST

Hi everyone Justin is in the hospital. He was admitted yesterday because he needed a blood transfusion before he has his bone marrow biopsy. To give Justin blood is tricky because of his hemalytic anemia, they must run it in very slow to try and prevent a reaction. The blood transfusion went great now he is waiting for his MRI of the hips and knees to see just how much damage has been done from the steriods. Later at 1:00 he goes into surgery for his bone marrow biopsy. We are hoping the doc's find his marrow full so that they may start this new treatment. If it is full their will be less of a chance of him loosing his donor graft. I will update when I get some news which probably won't be untill friday or monday.

We hope that all of you have a very blessed and happy Thanksgiving!!!

Monday, November 22, 2004 7:32 AM CST

Sorry for no updates but things have not been going well here. Justin's counts countinue to fall the doc's now know that it is due to his fighter cells that somehow made it through transplant. Justin's bone marrow is showing 100% donor cells but we know there are t-cells left of his in the blood stream which is causing all of these problems. They have not seen this before so are not sure how to treat it. I have been told that these doc's are joing the doc's in Minnesota and trying to come up with a plan, if need be they will go nationwide to find an answer. The problem is these t-cells are the fighters and anyway they treat him there is still a high chance that he may loose his donor graft. Yesterday we went for blood work and his hemaglobin is down to 6.7 which accounts for his being dizzy and not being able to walk any distance at all. When the doc's put the steriods up things start to get better but they say his body can't take much more steriods, since he can no longer go up stairs or walk for long periods of time. Yesterday the liver function test's were all high so now they may test for hepatitas. Justin has everyone baffled but through all of this his spirits have been great, he just wants to go back to school and play with his friens.
I know each time a count comes back bad they are worried about leaukemia so they are going to do another bone marrow biopsy soon.

Please once again I ask for your prayers for this special little boy that God has blessed us with, and for all the children that are suffering.

Tuesday, October 26, 2004 10:15 AM CDT

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Tuesday, October 26, 2004 5:35 AM CDT
Hi everyone! Justin went to clinic yesterday I wish I could say we recieved good news but his counts either went down or stayed about the same. I pray we are not looking at a backward slide again. The blood work is showing problems from the anemia but the bone marrow biopsy shows a possible virous or infection. The doc's have promised me to get together and talk about it to see if they can come up with something.

Last night Justin helped dad cut up some venison (he loves it}. Justin's wish list this year for christmas is for anything need to process his own venison like a grinder, smoker, meat slicer. He looks through the Cabela's catelog just about everyday just like most kids look at the christmas wish book. I think some of that is due to the steriods although he did want this stuff last year also. Every converesation he starts has something to do with food, I feel so bad for him. Part of that may be because we only let him eat three small meals and one snack. The weight is still going up even though we watch what he eats. I hope to put up new pictures but for some reason everytime I try it doesn't work.

Please keep praying for all the kids out there who are suffering as Justin, we have met some many families at the hospitals and clinics that we have been to.

GOD BLESS ALL!!!

Thursday, October 21, 2004 6:13 PM CDT

Hi everyone thanks again for all the birthday wishes for Justin and Ashley they loved them. Now we have the birthdays behind us for awhile. I have to say it was a busy week and 1/2 but it was worth it to see the joy on their faces at their parties.

Well as for Justin we went to clinic to recieve a four hour infusion yesterday, it was IVIG which is other peoples antibodies to help Justin try and build his immune system. Right now Justin's immune system is at it's lowest again and he needs all the help he can get. One of the doc's think Justin may have a virous that is causing problems with the heymolitic anemia. It is their hope that by boosting his immune system he may be able to fight this off if in fact that is what is happening. I have to admit that it is scarry to know that the longer his immune system is down the higher chance he has of getting lukemia. For the good news Justin's counts went up a little this week, well not the hemaglobin it droped. One of the big numbers they watch is the LDH normal is between 100-300 Justin's last week was 1586 and now is 800 still a long way from normal but on the way down.

We havn't recieved any news on the bone marrow biopsy as far as donor results, but everything else looked good no signs of cancer or a fast graft loss. THANK GOD!!!

I want to thank all of you again for all the support and prayers sent our way. I thank GOD for each and everyone of you.

Wednesday, October 13, 2004 2:48 PM CDT

Justin just got home from the hospital again last night he was only in for about 35 hours this time. We knew Justin was going in for surgery on tuesday to get another port put in, but what we didn't know was his counts had droped so low that they needed to admit him to give him some blood first. So monday night they gave him some red cells throughout the night. I didn't know how dangerous this was untill the doctor came in and sat down to tell me how they were forced to give him incompatible blood, because of the hemalytic anemiea it is impossible to give compatible blood. They had him hooked up to all kinds of moniters because they were expecting some kind of reaction like respitory problems, but Justin fooled all of them because he flew through it with no problems. The doctor told me that this blood will not stay with him long as his blood will destroy it but it stayed long enough to get him through the surgery. He did great through the surgery, they put the port in and did a bone marrow biopsy. The bone marrow biopsy was done out of desperation as they are not sure why his counts are dropping again, this will rule out possible leukemia (which there is a chance that the bone marrow transplant could cause) or it could rule out a possible bone marrow graft failure please pray neither of these things have happened. Our hope is that the platletts have droped because of some of the meds our may just be a delayed part of the whole anemiea thing.

This week is Ashley's birthday and I think she would love it if some of you could wish her a happy birthday here on the guestbook. She will be 14 on friday.

Thanks for the continued prayers!!! GOD BLESS ALL!!!

Thursday, October 7, 2004 1:25 PM CDT

Thank you for all the birthday wishes Justin loved them, he thought it was neat how people who hardly knew him was wishing him a happy birthday. It also means alot to me to know how many people out there love and pray for Justin each and every day THANKS!!!!

We just came back from clinic and recieved some more bad news. Justin's hemaglobin platlets and absolute neutrophil counts are droping pretty fast. They try and tell me it is from all the new meds he is on, but then they tell me they called the docs out in Minnesota to see if they have any input. The doc's out there want to do a bone marrow biopsey to make sure things look ok with the donor count. I try to relax and tell myself that the new donor count was taken just one and a half weeks ago and it was still the same as it was in June which is 94%donor. But I also know that a sign to bone marrow failure is a drop in counts. As I see things All we can do is place Justin in the hands of God along with my fears.

Once again thanks for the prayers!!!

Monday, October 4, 2004 7:28 PM CDT

Monday, October 4, 2004 6:32 PM CDT
I would like to ask a favor, if you are keeping up with Justin through this web page I was thinking it would be great to wish Justin a happy birthday here. He would love it to know people are still thinking of him this week as his 7th birthday will be wednesday.

I feel bad because last year when we told him he had to go through this transplant we told him that by the time it was his 7th birthday he would be back to normal. Well he is far from being back to normal which is the fast moving on the go kid. My heart aches for him as I see him 35pounds overweight with hips that can't get him upstairs . As I watch him get poked time after time and never complain or ask why me as most kids would I can't help thanking God for the gift he has given us in Justin.

IT was clinic day and we recieved more bad news. Justin needs gcsf which is a growth factor for his absolute neutrophil count which is way down, this is part of the blood that has to do with the immune system. To get this Justin has to get more shots on top of the two a day he is getting right now. Please keep his donor counts in your prayers as we are waiting still for the results on them. We can't help but wonder if his counts being down might have something to do with the graft even though the doc's try to reasure us it will be fine.

I will close by asking for all of you to sign in and say a quick hello and happy birthday to Justin to see how many wishes he gets. Thanks and God Bless All!!!

Wednesday, September 29, 2004 12:47 AM CDT

Not a whole lot to report. Justin went to clinic on Monday and his hemaglobin was about the same so he is not able to come down on the steriods this week(bummer). We did find out that the strand that the doc's saw on the end of his central line in the heart may be a blood clot so now Justin has to get two shots a day of a blood thinner. Yes I said two shoots a day and guess who has to do that ME. If you know me I hate shots but I have to say with such a great patient as Justin he makes it easy. The shot itself doesn't hurt he says it is when we push the medication in that it stings. Speaking of pokes they are still having a hard time finding good veins in Justin's arms and hands, he usually gets poked twice because the first time was missed. His poor little arms are all black and blue but he never complains, just breaths real hard while getting the poke. We did have to go to clinic yesterday for a blood draw to make sure the blood thinner is at the right level, so that makes 4 pokes this week.

Please continue to pray for Justin's blood counts so that he may continue to come off the steriods. He now has hip problems because of the steriods and all of the extra weight. We will be getting an MRI of the hips soon to see just how much damage has been done. Also please pray for his donor counts as we have sent off another blood test for that. We pray he is not still loseing donor counts.

We thank all of you for your prayers and we especially thank God for all of his blessings in our lives.

Thursday, September 23, 2004 10:30 AM CDT

Well how do I start but by saying Justin is back in the hospital. We have been here since saturday but we think we get out today. This is due to another line infection, so this time we had his central line pulled. Justin went through surgery on tuesday and everything went good. They placed an iv but that will come out before we leave here. The bad thing about all of this is they are having a hard time finding good veins to poke for the daily blood draws so it has been a little painfull. Well the docs are here so I have got to go. Please keep him in your prayers.

Thanks again and GOD BLESS ALL

Monday, August 30, 2004 8:34 PM CDT

I come to you today as this is the second anivirsary of Michael's death. I guess you might know already this has been a rough day. I thank God for the strength he has given me to get through these last two years with out it I would have fallen apart a long time ago. I remember when Michael was dying in the hospital I asked him to take my tears and turn them into prayers so that we may have the strength to get through and I think he has done just that for us.

I have had my mind alot on Justin because we are back in the hospital with a line infection and low hemaglobin again. We went to clinic last Monday and found out that Justin's hemaglobin had dropped from 12.4 to 8.3 in one week. This is from the accuired autoimmune hemalitic anemia that is from transplant, as you might recall we battled this back in June when he was put on high doses of steriods and it has been under controll untill now. So Justin will go back up on the steriods and they are also trying a new med which he will get by infusion in clinic every week for four weeks. Justin's hemaglobin is now 6.4 which is cousing him to be dizzy when first getting up from sitting or laying down for awhile. The doc's say to give him blood at this point is not going to help as his blood would just destroy the red cells. This is caused from his blood type being 0 and the donor's type being A which is causing the destruction of his red cells faster than he can make them. Justin is now typing out as type A so the docs feel this will resolve itself soon. As for the line infection they are treating him with two antibiotics and things are looking good on that account. Now we will just have to pray that his kidney's can handle this, as we were near kidney failure last time they put him on these antibiotics.

Thanks to all of you who have supported us through the last 3&1/2 years with all your prayers and love without these prayers I would hate to think how life might be. Please continue to pray for Justin and for Mike myself and Ashley.

GOD BLESS ALL!!!

Wednesday, July 21, 2004 12:55 AM CDT

We went to clinic today and everything seems to be going good the hemaglobin is at 12.4 which is the highest we have seen it and the creatnine was .6 which is good considering Justin did not drink his assigned amount of liquid yesterday. I did here from Minnesota that the donor counts seem to be at 94% donor still I personally don't like it but the doctors are still saying this is good and that he will probably stay a mixed donor count.

Justin has been feeling good although he does not have much energy still but this is normal because of the meds. Justin is very bummed because his grandpa and cousin David are doing the Ausable river marathon and he can't be there because it would be to hard to keep him away from the mob of people there.

Thanks again for all the prayers and support from everyone! GOD BLESS ALL!!!

Thursday, July 8, 2004 12:52 AM CDT

Sorry for not updating but I figure not to many people are logging in to checkup so I have only updated when I have news. We went to clinic yesterday and things are going good with the hemalytic anemia, his hemaglobin was up to 11.3 which is higher than we have ever seen it so the doctor came down half on the steriods. This is a good thing because Justin is about the same size from the steriods as he was in minnesota and his appetite is out of this world. His creatinine level was down to .5 which is great so he can now come off his iv fluids. All this together means maybe his blood pressure will start to stablize a little more. We still have no news on the donor counts which is the most important things hopefully in a few days (please continue to pray for this to be good).

Justin had a wonderfull fourth weekend and we hope all of you did as well. GOD BLESS!!!

Friday, June 25, 2004 10:37 AM CDT

I am here to ask for prayers because Justin is starting to lose his donor count. As you know this has been our worst nighmere because if he looses to much of this count he will need to go through another transplant and this is how we lost Michael almost 2 years ago. The doctor's are telling us not to worry to much because they see this happen and usually when it happens this far out of transplant it will stable and he will be a mixed blood graft. It doesn't stop us from being scared but I know God will pull us all through this. So please keep Justin's donor count in your prayers. Otherwise things are looking ok for his creatnine and his hemaglobin. Thanks and God Bless All.

Saturday, June 19, 2004 1:21 PM CDT

OK we are back out of the hospital but don't be surprised if we go back in soon. Justin's creatinine leavels are down to almost normal probably due to the high flushes of fluids and taking him off the immune surpressent for 2 days. We had an ultrasound of the kidneys done and they are enlarged a little but the doc's just want to watch them for now. There is still no explanation for this problem (it seems we here this a lot these days). The hemaglobin is still droping but not as fast it is down to 6.9 so they felt it was safe to let us go for the weekend and come back on monday morning. Normally Justin recieves red cells if he reaches 8 but they say at this point to transfuse him would be pointless as his body would destroy the new blood not to mention it would be very hard to find the right match for him right now. We have Justin on iv fluids at home to help keep the kidneys safe, hopefully that won't be long. There is also a blood pressure problem, his blood pressure is going high because of the fluids and the high doses of steriods he is now on. We have to take Justin's blood pressure at home and if it is high we give him a medication to bring it down. We just did that a couple of hours ago and I think his pressure went to low because he got sick and very spaced out like he was about to go into a seziure but he snaped out quickly, when I called the hospital they tell me this happens when blood pressure is to low. I hope this does not happen again because it was scary.

Please keep the prayers for Justin comming and Thanks for all the support, GOD BLESS ALL

Wednesday, June 16, 2004 5:47 PM CDT

It seems I come to you only when there is bad news, well guess what Justin is now back in the hospital. We went to clinic this morning and his hemaglobin was way down so they told me I had to come back tomorrow and probably every day to every other day to keep a close eye on it, but when I got home after the long drive there was a message saying we needed to get back right away to be admitted (I think this is when a cell phone would've come in handy) because his creatine level was way up.

let me try and explain these two problems one at a time although that may be hard because I don't understand it all myself. First the low hemaglobin problem the docs are calling it hemalytic anemia (please don't count the spelling mistakes as I am not good at spelling especially medical terms). This is a problem because the body is now fighting and destroying the new red cells being made by him which may be due to the blood types changing from his type to the donors type (which is not the same thing as the donor graft). The problem here is they can't just give him more transfusions because his antibodies will destroy them, so they are treating him with high doses of steriods again this should work but may take awhile. Back when we where in about a week and a half ago I mentioned his billiruben levels being elevated this could all be due to this hemaglobin problem.

The next problem is his creatine level is way up which means his kidneys are in danger and are not working right. They are taking him off some of the harsh medications for right now and are flushing him with high doses of fluids to try and help the kidneys get back on track. His normal level is .5 and he is now at 1.8 we need this number to go back down.

So once again I am asking for prayers one for his hemaglobin to go up and two for his creatine level to go down. We will ask God to answer these prayers according to his will and to please give the docs guidance. Thank you for everything. Justin also would like to say thank you to those who sign his guestbook.

Monday, June 7, 2004 8:51 AM CDT

Justin is now back at home, we got home late last night. The docs kept us one extra day because he was found with bacteria in his blood which meant he had to go on more antibiotics. We were told this probably came from his port. The first blood culture was positive but the next two have been negative so far so that means it may have been contaminated while processing the blood test, but he will have to stay on the full course of iv antibiotics at home which means we are pretty much stuck at home because it needs to be given three times a day for an hour each dose. The good news is they have decided to start tapering Justin's immune suppressent, it will take up to four months to get him completly off it though.

Thanks for the prayers and God Bless All!!

Thursday, June 3, 2004 4:27 PM CDT

We are on that rollercostar ride again because Justin was addmitted into the hospital again. This morning he woke up with a fever and a cough so we made the long trek back to Ann Arbor eventhough we were here yesterday. Right now he is doing fine no fever but still coughing and congested, but because of the fever this morning he will be here on antibiotic for 3 days (the doctor said he may get out on sunday if all goes well that would be great because it will be my birthday and all I want is a healthy boy.). The docs are a little concerned because his billiruben count was up a little so they are going to do some test on that also while we are here. They are talking about starting a taper on his immune suppresent since he seems to be getting sick a lot. I think that would be great because the sooner he gets off that stuff the sooner he will get back to himself and be strong.

All this hospital stuff is hard but I thank God for all the blessings he has given us and I pray that he continues to watch over not only Justin but all of us. I was sitting at clinic today and looking around at some of the other paitents and I know that God give us what we can handle because there are people out there who are worse off than us, please keep Justin and all Gods children who are suffering in your prayers. Thanks for the prayers I will try and update as I know more.

Wednesday, May 26, 2004 4:46 PM CDT

Hi everyone Justin is now home and doing great!! We were able to leave late saterday afternoon with the promise that we would be back on monday for another echo of the heart. When monday came Justin was very scared because he knew that if the echo showed alot of fluid around his heart he would need another line put in his chest, but guess what the echo showed only a little fluid. Justin is very happy he does not need to go to clinic untill next wednesday. He went into the hospital on three blood pressure meds and now he is on none and doing well.

Justin went to kindergarten graduation today and somewhat partisipated with his class, but being carefull not to be close to alot of people. Mrs. Hobeck asked if Justin could stay for awards because she had one for him so we did. Just before they called his name Justin got sick and had to leave. While he was throwing up in the bathroom I heard a big applause and said to Justin I wonder what is going on. When Justin was done in the bathroom we went back in the gym and Justin was given an award for the most missed person in the school and he recieved a standing ovation from the whole school which ment alot to him and to me. The principal also added that he was the most prayed for and I believe it because look how well he is doing. Thanks for the prayers.

Friday, May 21, 2004 6:37 AM CDT

Sorry for no updates but I wasn't getting any answers. Right now it looks like they will pull Justin's heart drain tube this afternoon and maybe send us home tonight or tomarrow morning. I pray this is not a mistake as he had a lot of fluid from the drain yesterday and they still don't have any idea what could be causing it. Justin is very scared and crying alot this morning because he knows it will hurt to get the drain out so please keep him in your prayers today. We have been told that they will watch him very close with regular echocardiogram's and chest x-ray's which means alot of trips 1&1/2hrs from home, which is scary for me knowing we are so far from the hospital. I will try and update when we get home.

Thanks for the continued prayers! GOD BLESS ALL!!

Tuesday, May 18, 2004 8:18 PM CDT

I am here to ask for more prayers today. Just as we think things are going good Justin is now getting another fever and he has severe diahrea, which one nurse thinks looks like graft vs host. The cardeoligist came by after the echo and said they were going to take the chest drain tube from his heart because there has not been much drainage in the past 24hrs but when we went to have it taken out they tried to pull fluid off with a syringe and were able to get a lot more then they thought was in there so they left the drain in. Justin is in a lot of pain from them taking the fluid out from around the heart so he is back on morphine. In short the docs still don't know what could be causing this so they don't know how to treat it. I think the next step may be to treat for the graft vs host which is with high doeses of steriods. Please keep him in your prayers!!! God has given us such a strong and brave boy and I am sure it is from all the prayers, He is truely working through Justin in our lives. Thanks so much!

Sunday, May 16, 2004 6:02 PM CDT

Hi everyone it is now sunday and we still have no positive results to any of the test, which may sound good but we are hoping to find out what has caused this so it can be fixed. Justin is doing much better he is off the oxygen in the day and just wears it at night unless there is a stressful proceedure he needs to go through. The cardioligists have said they will do another echo of the heart tomorrow to see if the fluid is still building or has stopped, if it appears stopped they will clamp his chest tube for 24hrs and then do another if it looks clear they will take the tube out of the chest. The endocronoligist have decreased the steriods for his adrienal gland because he is feeling much better. The pain manegment team has stopped the constant morphine drip and said he can still have a bolis when needed. The infectious diesese docs still think this looks like a bacteria and has recomended he stay on cephtraxin (spelled wrong). The pulminary docs say the lungs are healing just great and the x-rays are looking better. The bone marrow docs are just waiting to hear on all the cultures that have been sent out to see if maybe there may still be a chance this is graft vs host disease or the immune surpressent may have caused the damage and may need to be changed. Well now you now as much as we do which isn't much, except that he is doing better and that's what count's to us. The stress of the past week has been great but with all the prayers we are doing good (maybe a few more gray hairs or a few less hairs on our heads but o well).

Thanks again for the prayers and GOD BLESS ALL!

Friday, May 14, 2004 6:01 PM CDT

For those of you who have not heard we are back in the hospital in Ann Arbor this is our first hospital stay here.
We brought Justin in tuesday night with a fever and he had been having shortness of breath. We came to the E R because they don't automatically admit like Minestoa, from the er we were admitted. Things started to go downhill fast because they did a chest x-ray and saw Justin's heart was enlarged. He was put on oxygen right away and a team of doctors were sent in including cardioligist, icu, bone marrow, endocronolisist, and pulminary docs wich was scarry for us. Justin's oxygen stats started droping fast and we were told that he would probably be on the vent by the next day for awhile, we were terrified because we could see things happening the same way it happened to Michael before he was put on the vent and passed away 1 year and nine months ago. The next day he was put in icu and taken down to the o r for surgery to drain fluid from around his heart. He was then put on a morphine drip for the pain from that procedure and sent to the o r again to have a scope put in the lungs and have some samples of fluid taken for testing. It is now friday and he is doing much better he is still on the morphine drip and still on oxygen although much lower rates then the past couple of days. All we can do now is pray that the results to the tests come back ok. They have given us many reasons why this could have happend but they are not sure of anything right now. So once again I am here to ask for the prayers for Justin. God Bless All and thanks again for everything.
Denise and family

Tuesday, May 4, 2004 10:13 AM CDT

Hi everyone sorry for no updates latley but things are going great here. So far no positive cmv which has been our #1 concerne other than donor counts but we will not here anymore about that untill late June when we return to minnesota for a six month checkup. When we went to clinic last week the doctor told us we could start comming everyother week but the nurotic mother in me said no we will come every week untill we get a few more negative cmv results.

Justin is having a ball at home however he is becoming board easily because we are really not suppossed to go anywhere, although we do sneak out often enough. Justin also hates the hour and a half car ride down to Ann Arbor and the long wait there, it is just not as quick as Minnesota.

I want to once again thank everyone for all the prayers and ask that you keep praying for Justin and all the kids suffering at hospitals. GOD BLESS ALL!!!

Saturday, April 17, 2004 11:31 AM CDT

Hi everyone! Guess where Justin is! He is now back at home in Michigan and loving it. We had a long 11 hour drive and when we got off the expressway 3 miles from our house there was 8 police cars waiting to give Justin a ride home. You should have seen him, he was speechless with 10 policemen saluting him and the car lights on he didn't know what to say. Justin also had a big fan club waiting for him. Now he is getting back into the swing of things here, like playing with toys he has not seen in 41/2 months. On monday we will start our trips to Ann Arbor hopefully once a week.

I want to take this oppertunity to thank so many people, first the doctors and nurses who took such good care of Justin and put up with the thousands of questions I through at them on a daily basis. Next I would like to thank the staff of the Ronald Mcdonald House without them who knows where we would have been, I certainly know Justin loved it there in a way he was sad to leave. Ashley was also sad to leave her new friends there but she says she will keep in touch. I would also like to thank all those who came out to visit us Grandma & Grandpa, Grammy & Grampy, Aunt Angie, David, Jessica, Jacob, Uncle Pat, Aunt Gina, Uncle Dan, Stacie, Lynette and Lauren it made the long stay seem more bearable. Next I would like to thank all of you who sent prayers when we so despertly needed them. Justin would like to thank all of those who sent cards and gifts to him. I can't forget all the friends I made out there who were there to help support me through the tough times. Once again I would like to thank all those who helped out with the banquet and all those who contributed to it. We owe our thanks to so many people we could not have done it without you THANKS AND GOD BLESS ALL!!!

Monday, April 5, 2004 6:58 PM CDT

We went to clinic this morning and Dr. Peters told us we could possibly leave to go home next week. That of course is unless something like cmv problems don't arise, because we have been here and thought we were leaving before. When we have not decided yet it will be either on tuesday or thursday I think. Justin's anc (absolute nuetrophil count) is still low this week but we hope since he is on once a day ganciclovir it will start to recover on it's on. All the other counts like hemaglobin and platlets are doing well. He is still having problems with his stomach but that should recover in time they say.

Justin is very excited because dad came back out to stay untill we go home, and he missed him. So now it is time to think about packing again it is amazing how much STUFF you can accumulate in such a short period of time.

Thanks for all the prayers and support we couldnnn't do it with out everyone.

Tuesday, March 30, 2004 2:14 PM CST

I have been waiting to write untill I had some news on the donor counts and on the cmv. They are both good, still at 100% donor which each time we hear that we seem to breath a little easier. The cmv came back negative for the third time so they are going to let us try once a day again. This came just in time as Justin needed growth factor to help his absolute neutrophill cells which are his fighters in the blood. He has not needed this in almost two months, this is due to the ganciclovir twice a day. It ends up they sent a ganciclovir sensitivity test out last week so this week they sent out a ganciclovir level out to try and find out why it is not taking care of the cmv viruse. But all in all it is the donor count that matters and that is perfect, so we will just postpone our trip home for awhile and be happy and thank GOD for the good we see in the donor count.

Thanks for the prayers!!!

Saturday, March 27, 2004 7:30 PM CST

Nothing new to report here, except that Justin's appetite is low right now and he still has issues with vomiting that he didn't have before. I remember when Michael went off the steriods this happened with him so I guess I won't worry to much for now. It may be due to not eating much that his stomach just has nothing to help the pills sit well, because he still takes 27 pills a day plus the ganciclovir. Hopefully we will get some news this week on the donor counts and on the ganciclovir levels.

Thanks for the continued prayers!!!
God Bless All!!!

Tuesday, March 23, 2004 7:32 PM CST

Today has been a good day for Justin he has been playing downstairs alot. Although he is not eating as much since off the prednisone he has not lost weight I guess it will take some time. Yesterday on the other hand was another bad day for Justin, he went to clinic and got sick and had diarrhea while there. When he got home he continued to vomit eveything he ate, and later in the day he was running a fever of 100.3 we were able to keep it there for a few hours before it started to go down. Remember at 100.5 they have to go back to the hospital for another 3 days so we were very lucky. I have not heard anything on the cmv that was drawn yesterday. The doctor had a ganciclovir level drawn and sent out to be checked to see if maybe with his weight gain they should go up on the dose. Maybe that is one reason that the medication is not keeping the cmv at a negative. That has now postponed our homecoming for another 2-3 weeks, but that is ok because I would rather get this all straightened out before going home. When we get home we will still have to go to the U in Ann Arbor twice a week for clinic visits for awhile.

I just met another family who less than a month ago lost their oldest son to ALD and their middle son was transplanted l year ago and is almost completely blind. Please keep them in your prayers. We shared how our faith in God is the most important thing to keep us going.

Again thanks for the prayers and support. God Bless All!!!

Saturday, March 20, 2004 11:42 AM CST

I am happy to say we just got home from the hospital. Since there were no more fevers the docs finished the 72 hr course of antibiotics that is standard for fevers and said good-bye. But on the other hand I found out that Justin's cmv is BACK again only at a count of 1 but they are going to keep him on twice a day ganciclovir for now. I am not happy with that since he is going on nine weeks of a medication that is treated as harmful as chemo when he was only suppossed to be on it two weeks. This can harm the donor counts as we know, as of day 60 the donor counts were still ok. Please pray for this count to stay at 100%. I can't even say what this means to our trip home but I am concerned about comming home with everything up in the air like I feel it is now. Please keep us in your prayers and thanks to all. GOD BLESS!!!

Wednesday, March 17, 2004 7:52 PM CST

Well I have good news and bad news, good first Justin's cmv is still negative and the MRI has not changed since his one done in december. Now for the bad news we are headed back into the hospital because Justin is running a fever of 101.6. We have been battaling a low grade fever all day but because I am also sick with some kind of stomach flu they wanted him to try and fight it without antibiotics because if it is the same thing nothing will help, but since it went so high we have to go and get the antibiotics just in case there is something else brewing. We hope it will be a short stay and we will be back at the ronald mcdonald house. I don't know what this means to our trip home.

I will try and update soon please pray Justin does well over the next few day's. Thanks and God Bless All

Wednesday, March 17, 2004 7:52 PM CST

Monday, March 15, 2004 6:43 PM CST

We went to clinic today and it was our longest visit yet because he recieved his IGG (which is other peoples antibodies) which took about 5 hours. The doctors are hoping that the igg will help him fight the cmv viruse along with the ganciclovir. The nurse came in with premeds before the igg when we told her he doesn't take premeds she told me they had to give them because so many people have reactions, (the premeds are tylenol and benydrill). Justin became sick and vomited a few times after he slept a little he felt better. Dr. Peters saw Justin and said if he stays negative on the cmv untill the 26 of March we may still be able to come home that Saturday. Tomorrow is Justin's MRI of the brain this will tell us if the diesese is stopped yet so I am going to again ask for prayers please. We will meet with the neurologist after the MRI which is at 7:00 in the morning. We are taking another trip to Cabella's after the MRI which has become Justin's favorite place so I will try and update later I hope.

Thursday, March 11, 2004 2:38 PM CST

Hi everyone we went to clinic today and boy was it cold with windchill it was -17 we were not expecting it. Justin's platlets went up again so great news there. The cmv from monday was still at a two so we are staying on the gancicliver twice a day untill it goes back to normal. He had a test today to test his IGG levels (part of the immune system) and that was low at 480. This test was done before he went on the gancicliver and it was high at 1100, so it just goes to show what all the meds especially the csa and the gancicliver can do. Just as we think his immune system is getting stronger because he is getting stronger we find out it is actually lower. So on monday he will have to sit at clinic to recieve a 4 hour transfusion of other peoples antibodies to help boost his immune system.

Justin is sad because today Aunt Angie leaves and tomorrow grammy and grampy leave but he is happy because grandma and grandpa are comming tomorrow.

Again thanks for all the prayers cards and gifts sent to Justin it really makes his day.

Monday, March 8, 2004 6:09 PM CST

Hi everyone today we had clinic after having the weekend off, which was our first two days in a row off. Justin's platlets went back up which was great now for the bad new's Justin's cmv viruse is back at a two. As for right now they do not have a plan but they did another test today which we will get the results to tomorrow. The test that shows the two was taken on friday, so they want to see what it will show after two days off from gancicliver because he doesn't get that on the weekends. All we can do right now is pray!! I do however think that this will put a monkey wrench in our plans to be home at the end of the month.

Today dad and aunt Angie came just in time so dad could go to clinic with us and boy is Justin happy. Dad got here just in time because about 2 hours after they got here it started snowing very bad and at the exit here there was a 53 car pile up from the roads being so bad.

Please keep the prayers coming!!!

Thursday, March 4, 2004 2:17 PM CST

No clinic today. Yesterday we walked to clinic Justin complained he was cold but no complaints about how far it was, he did great. We walked to Burger King two days ago and justin orderd a kids meal it was his first kids meal in over a year and he loved it. The doctor told us that he wants to see Justin get more excersize now that his body is starting to make its own platlets just to try and get his weight down as he has only two more weeks of steriods. Justin has not had a platlet transfusion since last thursday that is great. We are now letting Justin go down in the main rooms although we still try and keep his contact with people down to a minimum.

Justin is missing dad and asks at least 5-10 time a day when he will be back ,dad is hoping it will be monday morning with Aunt Angie.

Thanks again for all the prayers and support that everyone has shown we couldn't do it without you.

Sunday, February 29, 2004 3:04 PM CST

We walked to clinic this morning with Ashley because Justin just had to wake her up because he knew she didn't have school. Justin's platletts were at 63 from his transfusion on thursday (they are keeping his above 40) so that looked great. We also found out that the cmv is negative again which is great news. Tomorrow we will see Dr. Peters and hopefully talk about twice a week visits.

The weather here has been warm in the 40's and the snow is melting fast. It does make it nice to walk to clinic since we don't have a car here while dad is at home. I think tomorrow I may make Justin walk all the way it will be hard for him but we will take it slow. He has put on over 20 pounds since he has been here from the meds but it will soon start to go once he is off the prednisone and with a little more activity.

God Bless All!!!

Thursday, February 26, 2004 1:57 PM CST

We just got back from clinic, Justin recieved platletts and that was the first time since saturday so it looks like things are going in the right direction on that accord. Now we need to get this cmv to stay negative it is still at one not bad but it should be gone with all the gancicliver he is on. Justin's c.s.a. level has also been hard to get regulated(that is one of the immune suppressent meds), he went as high as 200 mg but have had to keep backing it down to 125 mg.

Justin is still missing dad he wants to count down on the calander when he will be back but that is hard to do when we don't know how long dad will have to work. We try and keep busy by playing games (trouble is his favorite). Justin even made me build a tent for us to sleep in although he said it wasn't as good as dad's.

Thanks again for all the prayers and support we couldn't do it without everyone's help.

Monday, February 23, 2004 4:38 PM CST

We just recieved great news, Justin is still at 100% donor despite being on the gancicliver for so long. Now we just have to watch this cmv and hope it doesn't keep going up. I can't get any iformation from the doc's to say what the next step might be if it does go up.

Justin is missing dad because he had to leave to go back to work for awhile, we hope it's not that long before he is back.

Justin Ashley and I are just comming up from the gym downstairs they had tv cameras because Marian Gaborik from the Minnesota Wild hockey came and donated $30,000 to the Ronald Mcdonald House. He brought Andrew Brunette and Matt Johnson with him and they played a little floor hockey with the kids here, it was a very big deal.

Thanks for the prayers, we see so many ways God is with us in this fight.

Friday, February 20, 2004 7:29 PM CST

We didn't go to clinic but we recieved a phone call to say that Justin's CSA level was way to high (more than double). This is the medication that surpresses his immune system, they told me to hold his next two doses and then cut the dose down. When I asked if there was any worry with it being so high they said no it could just cause seizures so watch him close (I think that is a big worry). But so far Justin is doing just fine. The next phone call from clinic was to say that the cmv count is back at one, but they aren't going to change the medication back to twice a day. I am not sure why but I think they are going to see if it rises and if it does I bet they put him on the harsh medication. We are being told that there should be results on the donor count by the first of next week I pray it is better than the results we recieved today on the other test that were run.

I wanted to let you all know that baby Cade passed away on wednesday night. It was a sad night here at the house because everyone knew this was the second child they have lost here. The mom said she has comfort knowing that her boys are free from pain playing together with our Lord in heaven. We see many of strong families being led by God here at the house, because without God I don't know how anyone could survive the pain.

God Bless All !!! Please keep praying for Justin!!!

Wednesday, February 18, 2004 11:28 AM CST

We just got back from a long walk that we took after clinic. Justin is now on the once a day dose of gancicliver because his cmv continues to be negative. His counts (not donor) are doing great it appears he is making platletts on his own. There is one small concerne right now since saturday we have had two nurses tell us that Justin's right lung sounds a little course he has not had any fevers or coughing except when he first woke up on saturday. The doctor's assistant that was listing today said it is not bad enough to warrent a chest x-ray as of yet, he just wants to see him back tomorrow.

This is not an easy place to be at times like yesterday we found out about Tom a 16 year old from rhode island going through a bone marrow transplant just past away. We have gotten to know alot of people here and to hear somthing like this is hard. Please pray for Tom's family.

Wednesday, February 18, 2004 11:28 AM CST

Monday, February 16, 2004 12:02 AM CST

We just got back from clinic and even though he had yesterday off he still didn't need platletts. They ran the cmv test and we should get results tomorrow. They also ran another RFLP test which is to check the donor counts again so hopefully in about a week we will get continued good news there.

Aunt Gina and Uncle Dan were here for the weekend and Justin had a good time visiting with them. Ashley went home for 4 days with them to visit school friends. We miss Ashley eventhough she likes to hang-out downstairs with friends she has met here.

Justin wants to thank everyone who has sent cards and gifts to him, he loves to go downstairs and check the mail. I think he is starting to get anxious to go back home and back to a normal life, although he never complains about all he goes through. Thanks for the support and prayers.

Thursday, February 12, 2004 3:30 PM CST

We went to clinic today and recieved platlets but he actually didn't need them but because they were preorderd he got them. We also just found out his cmv is back to one we don't know the plan yet untill we talk to the doc's tomorrow. We just wonder how long they think they can keep him on this gancicliver without major problems with the counts.
Justin is having fun going out sledding we took him down by the mississippi river yesterday to show him a fort made from logs and tree branches. With the weather being a little warmer over the past week even I have been getting out for walks and snow shoe trips with dad grandma and grandpa. I will finally put up new pictures as we have alot from our trips outside.
God Bless All!!! and thanks for the continued prayers.

Tuesday, February 10, 2004 5:12 PM CST

Well I mentioned awhile ago that this is an up and down rollar-coaster ride, well we just heard that Justin's cmv virus is up to two from one on thursday. This is not the news we expected or wanted to hear, we have not talk to the doctors yet but we feel there is a possibility they may want to put him on the stronger medication which he will have to go back in the hospital for. Either way is not good because if we keep him on the ganciclovir he takes a bigger chance of loosing his donor count. Tomorrow we will talk to the doctors so I will update when we know more.

We did get a chance to go to Cabelas today because the doctors said it would not be that busy and if he wore his mask it would be ok. Justin had a ball because he got to eat a venison brat which was huge with alot of french fries and thats about all this kid thinks about as a matter of fact he asked if he could go back for dinner.

Please pray for Justin's cmv, Thank you and God Bless

Sunday, February 8, 2004 7:55 AM CST

Good mornig everybody, I am sorry I haven't updated in a few days but it has been very busy here (all good) plus I couldn't get online yesterday when I tried. Where to begin first we found out the final results on Justin's donor count is 100% on both fractions (YEA!!!). Next it looks like Justin is starting to make his own platlets because we seem to be on an everyother day clinic visit now hopefully this will stay. The cmv count on thursday went down to 1 we really thought it would be gone but maybe on Monday. We continue to use the ganciclovir twice a day, but his counts aren't doing that bad on it. The doctor's had to up his lasiks to twice a day because of weightgain (18 pounds since he arrived here) this is due alot to the prednisone that he is on and he will hopefully be off from that by mid-march because he is on a taper. Right now the dose of prednisone is 30 mg a day and on every wednesday he goes down by 5mg.

We have been having some fun the last couple of days. Yesterday we went to a small zoo and saw polar bears, penguins, sealions, giraffe, zebra, lions, tigers,leopards,cougars, wolves, and many more animals Justin had a ball and got some excercise also. The day before that we went to the ice-carnival in ST. Paul and saw the big ice castle and many ice sculptures which was neat. Today the plan is to get out and pull Justin in a sled that we barrowed from the Ronald Mcdonald house. These things are ok for Justin because they are outside and don't involve contact with people. Although he really wants to go to a store he can't because of people and sickness. Thats about it we can't wait to get back home to Michigan.

God Bless All!!! Thanks for the prayers!!!

Wednesday, February 4, 2004 4:04 PM CST

We found out yesterday that Justin's cmv count was down to 4 from 12, they have decided to keep him on the twice a day ganciclovir untill he reaches 0 which they are hoping will be tomorrow. Originally they were going to addmit him to the hospital but because it came so far from thursday to monday they have high hopes. His potassium and magnesium are still a complication so they don't want to mess with the electrolytes any more then absolutly nessecary. We still have no final word on the donor counts but we still pray they are doing just fine.

I have not said a whole lot about how well Justin does through everything, but the kid never ever complains about anything that he has to do. I know a lot of adults (including myself) who couldn't take all the pills he takes and sit so quietly during the hours at clinic while getting blood or meds, when I know that he does not allways feel that great. During all this we know that Justin thinks about his big brother Michael who died going through the same thing but he never seems scared. We thank God for that strength he has given Justin.

Monday, February 2, 2004 1:48 PM CST

We haven't had any new news to report, but when we went to clinic today Dr. Peters said we could have the day off clinic tomorrow. That is exciting news because we have not had a day to just stay in yet and it also means that his counts are not doing that bad that they feel safe letting him go a day without checking. They took another cmv count today and we are praying that it is back down to normal so we can stop this medicine twice a day. If the cmv is still there they are pretty sure they will have to put him back in the hospital to treat him with the medication that is harsh on the kidney's and on the electrolytes.

Right now we are getting alot of snow and the temperatures are bearable at about 15 degrees not the -26 we had last week. Thanks for the prayers, and God Bless All.

Friday, January 30, 2004 5:00 PM CST

Thanks for the prayers!! We just found out that Justin's cmv count has gone down to 12 from 28 so they are going to continue to treat twice a day untill tuesday and then hopefully it will be negative once again. We also recieved a preliminary result on half of the donor count and that is still at 100%, they are not supposed to give this info out untill it is offical because it could be wrong but it looks good. The neutrophils still need to be run through the machine again we hope this is not a bad sign, but we are keeping the faith that they will also turn out good.

So as far as the rollar-coaster ride we hope we are on a uphill run for now, but we know this could all change at anytime. With all the prayers we will continue to get through because of Gods love and strength that he is giving us.

Thursday, January 29, 2004 7:47 PM CST

We have no news tonight. Justin recieved red blood cells and platlets today at clinic so our visit was almost 5 hours long. Justin is lucky because they have two rooms with tv's in them and he gets there early so he will usually get the tv room, I think the nurses like to plan it that way because he is such a good kid at clinic. We also take card games to play and now with dad and grandpa at clinic it is more fun to play games.

My prayer request is still the same for tonight, that is mostly for the donor counts to stay at 100% and then for the cmv test to come back down to normal. God Bless All!!!

Wednesday, January 28, 2004 5:49 PM CST

Not much to report except that his counts are now dropping again which may still be due to the ganciclovir. We are holding our breath for the donor results which were not back yet. Justin will get another test tomorrow for cmv so we hope and pray that this one turns out much better so he will not have to go back into the hospital.

On a brighter note I would like to take this oppertunity to thank everyone for their support at the benefit on Saturday. I heard that everyone had a great time and I sure wish I could have been there. It was a great turn out and raised money so that daddy will be able to be out here with Justin more often, which is good for the both of them. It amazes me how generous people are when on t.v. we hear so much of violence and war and bad times. God has once again proven to us how many wonderful family and friends that we truely have. Thanks to all and may God Bless each and everyone of you!!!!

Please pray for the donor counts and the cmv test tonight so that Justin may come home to Michigan happy and healthy by the middle of April which is when he is supposed to be released.

Tuesday, January 27, 2004 1:44 PM CST

Today there is no news, we went to clinic and had to have platlets. We are anxious to find out about the donor counts but no news yet. Today Justin starts his once a day ganciclover so maybe his counts will start coming up on their own to stay. They also did a type-n-cross which is just a blood draw to send to the lab because they figure he may need red-blood cells soon.

I have heard that baby Cade may be taken off the vent today so we continue to pray for him and all the children who are suffering here.

I have just recieved news that Justin's cmv is back it is at 28 which is 20 more than its highest point. We don't know why it came back this strong in only a couple of day's but this means Justin will go back on the twice a day ganciclover for another week if this does not work he will be addmitted back to the hospital for a stronger medication. We now have to worry more about the donor counts. I know out here life is like this rollar-coaster ride with the up's and the down's but it is still hard to hear the bad news. Please pray for all of us but especially for Justin.

Monday, January 26, 2004 2:19 PM CST

Things are going about the same here, still have 8:00am clinic visits which last anywhere from 1-4 hours, depending on what he needs. Justin's electrolytes have been good he does not need magnesium or potassium anymore, which is good because that took the longest. He now seems to be requiring platelet's every other day, and has not had a redcell transfusion since the short hospital stay 9 days ago. Hopefully we will get donor results either tomorrow or wednesday so we keep praying they are still at 100%.

Right now Justin is working with his teacher out here although he misses being back at school. Justin finds things to keep him busy like puzzels which is his favorite right now.

Hope to have more good news tomorrow, so keep praying!!! Thanks for everything we relize how God has blessed us with so many caring friends and family, we couldn't go through this without your support.

Saturday, January 24, 2004 6:35 PM CST

Today has been a good day for Justin he went to clinic and did not need to recieve anything. His counts even went up on their own which I hope is a good sign.

We had a good day with my cousin Stacie it was nice to sit down and visit and not have to rush off somewhere. Justin can't wait untill tomorrow because his dad comes back. We are hoping he can stay for awhile.

Thank you for the continued prayers and all of the great journal entries Justin love to hear them.

Friday, January 23, 2004 5:56 PM CST

Tonight I get to bring good news, we just found out that Justin's cmv counts went back down to normal. This means he will go on a low dose of the ganciclover which is the one that brings the counts down. We hope in a week or two his white count will start going up on it's own without the growth-factor. Next week we will find out if he has kept his 100% donor count through this.

Justin was sad because grammy and grampy left today but he is excited because dad, grandpa and grandma are coming on sunday morning. I am excited because my cousin Stacie is coming in from California tonight for a short one day stay.

God Bless all and Thanks again for the prayers for God is working in our lives.

Wednesday, January 21, 2004 6:33 PM CST

We started back up with the clinic visits and today was a good visit. Justin didn't need to have any blood products or medications so it made the visit shorter. We expect to need platletts tomorrow but hopefully nothing else. The white blood cell count went down a little but the anc count went up a little which is good considering he is still on the ganciclovir which has been bringing the counts all down.
Tomorrow they will do another cmv test to see if the cmv viruse is undercontrol yet, right now that is our major concern and my prayer request for tonight.

I would also like to ask for prayers for a baby named Cade he is on a ventalator and they want to try and get him off tomorrow. Cade's mom and dad lost a two year old about six months before Michael died going through a bone marrow transplant. We first met them when we came out here for the first time 2 1/2 years ago.

Thanks for the support and prayers!!

Tuesday, January 20, 2004 3:17 PM CST

Hi everyone! Justin stayed cool in the hospital so he did his three days of antibiotics and they let him out today. We just got home about one hour ago and Justin is all settled in and watching tv. Justin's cmv test which was done on saturday came back the same with 8 out of 50,000 cells testing positive. The doctor's were happy about this because after 5 days on the medicine it hasn't gone up so hopefully soon it will be gone. In the meantime his counts are still droping and we are praying this does not do anything to the donor counts. The doctors agreed to do another donor count for our peace of mind to make sure he is not losing this count as well.

I have seen God work so many miricals here and I know he hears all the prayers thank you for those continued prayers.

Sunday, January 18, 2004 3:46 PM CST

I'm sorry I didn't update yesterday but we ran into a setback. Justin was readmitted back into the hospital because he had a temp of 101.4. He had a chest x-ray and blood cultures taken to see if they might find something. His chest x-ray was o.k. and we have no results on the blood cultures. The docters feel it is just some small bug or bacteria that normally can take care of itself but with the immune system down it will cause a fever but hopefully nothing more.
We just pray now that it won't hurt his donor counts and that he will soon be back at the Ronald McDonald house.

Friday, January 16, 2004 5:21 PM CST

Today we recieved great news JUSTIN NOW HAS 100% DONORS BLOOD!!! If he can keep these counts he is out of the woods. Now we have to keep him from becoming ill.

We did have a spell at clinic today just after we recieved the news we were headed down to get a chest x-ray just to make sure the cmv has not hit his lungs, when Justin began to throw-up in the middle of the waiting room. He is just fine now and has been eating up a storm again. I guess it is just a reminder that he is still a sick little boy no matter how he eats and plays. I have to say he is such a trooper he never whines or cries no matter how sick he is.

Thanks for the prayers, we can see God working in Justin's life and in our's.

Thursday, January 15, 2004 8:27 PM CST

Today at clinic Justin didn'dt need anything for a change, but since they preorderd platlets they gave them to him. We are hoping that he won't need the platlets tomorrow since recieved them today. Tomorrow may be the day we find out about donor count lets keep praying.

Justin was happy because Lynette and Lauren came out today and we played bingo and won some prizes for him. Justin couldn't go play bingo himself because we feel it would expose him to a lot of germs.

Thanks again for the prayers.

Wednesday, January 14, 2004 7:24 PM CST

Today at clinic Justin's white blood count was stable enough to be taken off the growth factor, which helps his body to produce white cells. I am told when they are taken off this that the counts will drop but we will wonder if it is from no growth factor or from the medicine that treats the cmv viruse. We are still being told that he is doing great.

I am afraid to say that I have to watch how much Justin eats because his weight is going up fast. His appatite is incredible from the steriods and he won't come off these until march. It is hard to believe that 2 weeks ago Justin couldn't put food by his mouth without getting sick now we can't keep the food away from him. This is good for his recovery.

I know God hears all these prayers that have been sent this way and he is working for Justin and also for us because we would not be able to get through all of this and still be strong for Justin. Thanks for the help!!!

Tuesday, January 13, 2004 3:32 PM CST

I have to start out by saying we recieved some bad news today. Every week Justin is checked for a viruse that is called cmv, it is a viruse that is a common cold and stays in the body like chickenpox and when the body's immune system is shut down like Justin's is it can come out and be dangerous for these kids. The doctor's can treat it when caught this early but the medication used will bring the blood counts down which is not good at this point but not to bad. It is only bad news to us because this is the viruse that Michael had after we found out his donor counts were at 100onor after being treated for cmv he lost his donor counts and had to go through another bone marrow transplant and he passed away during that transplant. So I am asking for all the prayers to continue for Justin"s donor counts as this could harm that. We still have not had any word on the results of the donor counts yet but we hope if donor counts are good that this treatment does not harm that. I am sorry for sounding so negative as the doctors have said this is just a small bump in the road and he will get through it more than likly just fine, but it hits us hard. Thanks for the contiuned support and prayers.

Sunday, January 11, 2004 8:40 PM CST

Well Justin is counting down the days until his dad comes back and he only left this morning. Everything here is about the same a three hour clinic visit for platelets and more magnesium - potassium. Justin is now playing with grammy and grampy as they just arrived this afternoon.

Thanks again for all the support and prayers.

Sunday, January 11, 2004 8:40 PM CST

Saturday, January 10, 2004 7:24 PM CST

Justin and I walked to clinic today I pushed him in a wheele chair outside so we could go fast. He just does not have his strength back but he walked through the tunnel from the hospital to clinic which was inside so we could go slow. Justin didn't need platlets today but he will tomorrow. He did recieve more magnesium and potassium which is normal because of all his meds, his kidney's work hard to pass all the drugs that they get rid of the good stuff also. Dad came back for the night but is leaving tomorrow afternoon for 2 weeks We will miss him.

Thanks for all the support and prayers. Justin loves all the journal entries and cards and gifts sent to him. God Bless All.

Friday, January 9, 2004 9:02 PM CST

Another clinic appointment today, we were only there for three hours. His blood counts were up again today which is good. Justin didn't play much today because his leg was very sore from playing soccer in the gym yesterday. He didn't relize that being in a hospital bed for one month would mean weak muscles. Still as usual Justin is eating up a storm.

Dad, Grandpa, and Grandma left today to do the snow shoe race in Dulth. They are hoping for some snow because there is not much here. Sunday dad will be going home to Michigan to work for a couple of weeks. Justin, Mom, and Ashley will miss him while he is gone. Thanks for the great journel enteries and the prayers and God Bless.

Thursday, January 8, 2004 7:13 PM CST

Well Justin had a good night and a great day eventhough he spent 5 hours in clinic recieving platletts and magnesium-potassium. He was able to go down to the gym and play because nobody was there. Justin may feel a little confined even here because we have to keep him healthy and the only way to do that is to keep him away from people and to wash our hands what seems like 100 times a day. Justin's appatite is out of control he is eating all day and gaining alot of weight but that is due to the high doses of steriods he is on which is also causing his face to swell it will be like that untill March when he comes off the steriods. Speakin of medicines' Justin wants me to tell everyone how many pills he takes in a day which is 47 right now. He does great at taking the pills in the morning and at night he has anywhere from 14 to 19 to take at once and then there is the meds he still gets IV at clinic. The nurses were very amazed they said most 6 year olds take the liquid meds and don't do very well at that.

The donor counts were taken today but we won't find out until about one and a half weeks. Thanks for the prayers

Wednesday, January 7, 2004 1:06 PM CST

Today I am doing the journal a little early because It's the big day Justin is now back at the ronald mcdonald house and is very excited. We took pictures and I wanted to get them on the web page since I know how to use this computer so I am here at the hospital doing the last minute stuff. Tomorrow Justin will be followed at clinic for all the blood labs and probably more platletts. Tomorrow is also the day they do the first check for the donors blood so I am asking everyone to say a special prayer for Justin tonight. There is a rash on Justin's hands which they tell us could be graft verses host disease they say it is nothing to worry about and that they will watch it very close in clinic. We will try to get our computer up and running at the ronald mcdonald house so don't worry if you don't see anything tomorrow.

Tuesday, January 6, 2004 6:48 PM CST

Right now it is 7:00 here and Justin is on the bike peddeling he is really doing good. We have gone through all the discharge classes and are ready to leave tomorrow. Dad has made many trips back to the ronald mcdonald house with bags of stuff that we have accumulated here. I guess when you spend 29 days in one small room especially at christmas time alot can be gathered. It is now going to be scarry knowing there is not going to be a nurse walking in at any minute to answere all the questions you may have. They tell us most of the kids end up back in the hospital for one reason or another mostly fevers for short periods of time. We try to look at the bright side of things but we were once here doing the same thing with Michael and things went downhill. We can only put things in Gods hands and pray for the best.

Monday, January 5, 2004 7:18 PM CST

Justin's blood counts were back up today but the docs say they could go back down so do not worry if that happens. Today was Justins first day that he was unhooked from all pumps because he is now taking all medicines by mouth and he is eating and drinking enough to stay unhooked. They do have to hook him up for his growth factor which helps his body to produce new white cells he will stay on this untill his absolute neutrophils count (ANC) reaches 2500 for two days so he will be recieving this at clinic everyday. Justin did get sick today which was the first time in about 5 days but we think it is because he drank some chocolate milk with his pills and he has not had any milk since being here.

Thanks for the prays for Justin and all the kids up here!!

Sunday, January 4, 2004 8:57 PM CST

Well today will be short because Justin had such a good day that it was the first time I (mom) went home for more than working out and a shower. I guess that Justin ate up a storm and went for a long walk again. On the walk he got a power aid drink and drank the whole thing.

Justin's counts were down today they were the same as they were on thursday which was hard to swallow but we are still being reassured that with the cord blood transplant this is all completly normal. The plan is to let him leave the hospital on wednesday or thursday and they even said he can get off the tpn (iv nutrition) tomarrow because he is eating.

Saturday, January 3, 2004 8:53 PM CST

Today was another great day for Justin he is eating better, still not great but for now its ok. The doctors told us he may be able to go back to the ronald mcdonald house by next wednesday or thursday. It kind of depends on his blood counts if they continue to go up he leaves, although today there was not really much of a rise but the docs say this is normal. They are now giving him most of his meds by mouth instead of in his iv. Some of these medicines are liquid and he does not like that it usually makes him sick to his stomach, but the pills he takes great. We were also told that he may be coming back on iv nutrition because his appitite is not all the way back, but if he keeps eating like he did today I think he will be off the iv stuff.

Today he walked all the way to where the clinic is which is a good distance for a kid who has been in bed sick for 26 days but he did great with only 1 break. He took his remote control three wheeler and had a blast in the empty halls.

I continue to ask for prayers for Justin's donor blood counts, but tonight I would like to ask for prayers for all the kids we see suffering up here there are five out of maybe 11 that are on ventilators. God Bless!!

Friday, January 2, 2004 7:51 PM CST

Today Justin was able to go out in the hall for the first time in 25 days. It was touchy last night his temp went up to 100.3 and if it gets to 100.5 thats what they call a fever and have to start treating him with the heavy antibiotics again, but we put cold rags on him and the temp never went up but eventually went down. Justin loved being out in the hall as you will see in the pictures he had to wear a gown and gloves because of the bacteria found in a stool culture. The mask Justin had a hard time with but he will have to get used to it as he will have to wear it in public for the next 9 months to a year to avoid picking up infections from other people. The doctor's have not said anything about leaving the hospital but a nurse mentioned it could be as early as the middle of next week.

God Bless You All and thanks for the prayers!!

Thursday, January 1, 2004 7:39 PM CST

Today was another busy day Justin had lots of visitors so he was up and playing all day. That of course means it was a good day for Justin still eating a little, they are going to decrease his tpn and lipids which is his nutrsion in a bag.

It is now 8:00 and Justin's vitals were just taken and his temp is on the rise only 99.1 right now but his usually is around 97 so we believe he may be getting another temp. I suppose that it will be a long night as we wait to keep getting the temp rechecked. The nurse said she would check more often than the normal 4 hours just to get a jump on it. We really hope nothing comes of this because the doctor just told Justin that maybe he could go out in the halls and walk around which is a very big deal around here since he has been cooped up in this small room for over three weeks.

Please keep the prayers comming for Justin!!

Wednesday, December 31, 2003 8:02 PM CST

This was another good day for Justin he is eating very little but at least he is keeping it down. It was a very busy day because his Uncle Pat and David came out and Jacob was up for awhile playing games with him. Justin's counts continue to do well his white count is at 1000 and his absoulute neutrophils was at 500. The absolute neutrophils have to be at 2500 for 2 days before he can leave the hospital and go back to the Ronald Mcdonald House. Justin looks forward to that time back to the house but then he will have to go to clinic everyday for awhile to recieve platelets and red cells until his body can start making their own in which time he will be able to come home to Michigan.

We would like to wish all of you a very happy New Year. God Bless All!!!!

Tuesday, December 30, 2003 6:41 PM CST

Today was a great day for Justin he had a ball playing all day. No fevers no major pains and no itchys. As a matter of fact today Justin has been eating. Mom and dad were told to go to the store and get his shopping list that he made. When we came back he started eating cotten candy, beef jerky, Yogert, butter noodles and cereal. The white count today was still the same as it was last night which could be why he is feeling better because his body is not working so hard to accept the blood.

Thank you for all the prayers we know God is watching over Justin and us in these difficult days.

Monday, December 29, 2003 7:21 PM CST

Today started out to be ok Justin started out playing and having a good time. When late afternoon hit he started to go downhill his breathing became real shallow and fast his oxygen started to fall a little and the fever hit again, not to mention he was sick. It was hard for us to watch the oxygen go down because that is what we did with Michael. The doctor's think it may be that his counts are comming in and some kids react like that but just to be safe they did another chest x-ray and scheduled a c.t. scan of the chest for tomarrow. The chest x-ray just came back and it looked good again and his oxygen levels are hanging between 94 and 96 he had some tylenol for the fever so things aren't looking so bad now.

We were able to get a couple of new pictures eventhough he was feeling bad. We want everyone to see the changes in him because soon he will be very puffy in the face from the meds and he will look very different.

Thanks for the continued prayers!!!

Sunday, December 28, 2003 8:46 PM CST

Today was a rough day for Justin he came down with a fever in the middle of the night and just could not shake it all day. On top of the fever he had a bad sore throught and a dry cough, the doctors orderd a chest x-ray done which they say looked ok. For all of you who know we lost michael to pnemonea during the same transplant that Justin is now going through so it was a very scary thought for us to think Justin may be coming down with something. He still has the burning eyes and his stool tested positive for a bacteria so if we add all these things up you can see why it was a rough day for him.

Please keep the prayers for Justin coming. God Bless All!!!

Saturday, December 27, 2003 6:54 PM CST

Justin had fun playing today with all his new toys, and with the bike that grandpa brought from home.

Justin's white count went down a little but the doctor told us to expect that this early. We have been trying to reintroduce food but the only thing he is keeping down is a little popcorn. Right now the biggest complaint we are getting from Justin is his eyes are burning, we notice this gets worse when he is tired or when he plays games on the t.v. for long periods of time.

Justin say's hi to everybody!

Friday, December 26, 2003 6:33 PM CST

Well it is the day after christmas and Justin is still getting preasents, because grandma grandpa aunt angie and david jessica an jake came out to see him. This was another good day just some stomach cramps in the morning. Justin is still eating a little popcorn today, but not much of anything else.

Justin still needs the prayers that this new marrow will graft in his body. Thanks so much!!!

Thursday, December 25, 2003 8:51 PM CST

I think the picture will tell all. Justin had a big day because santa came and brought him a lot of fun things to play with. Justin had a good day he has even tried to eat a little the only thing that taste good to him right now is popcorn.

We hope santa was good to everyone out there. And God Bless all!!!

Wednesday, December 24, 2003 7:57 PM CST

Well today is Christmas eve and Justin is waiting for santa. Today was a good day for Justin he only got sick once and that was when he saw some food. He has some nasty looking sores in his mouth, the doctor's are just amazed he is not on morphine yet but he say's they are not terribly bad. Soon we will be able to start checking blood counts (not donor counts untill day 21). Now we just try and keep him from getting sick which means limited visitors for a couple of weeks.

God Bless all of you and thanks for the prayers.

Merry Christmas to all and to all a good night.

Tuesday, December 23, 2003 7:52 PM CST

Tonight is short because mom is very tired and that would be because Justin had a very good day. He woke up early after having a not good night but when he woke up he seemed fine and has had us up and running in one small room all day. Today was another big step because he shaved his head today. He had no choice because when he woke up there was a lot of green hair in his bed.

Monday, December 22, 2003 8:29 PM CST

Justin's day's seem to be starting out the same pretty yucky with a sick tummy but after taking meds and sleeping awhile he seems to get better as the day goes on. We are still being told that this is normal and will get worse I hate to think of it.

Justin loves to have all the messages read to him Thanks!!

Sunday, December 21, 2003 6:59 PM CST

Today started out yucky because Justin woke up sick to his stomach so he was given the phenegren for his tummy which made him sleepy. When he woke up he was crying because his throat hurt, the doc's came in and said it was a part of the mucocites and that it would get worse. They wrote him a script for morphine as needed, but said by the end of the week he may be on a morphine drip. We don't like the sounds of that. We were able to keep him comfortable enough without it today but you could tell he was not feeling well. Tonight grammy and grampy came out and he played with grampy with some new K-Nex he got for christmas. Justin is counting down the days untill santa comes. It was also a hard day for us because it would have been Michael's 16 birthday today.

God Bless and thanks for everything.

Saturday, December 20, 2003 6:42 PM CST

Justin had another good day today, although it started out bad. Between 5:00am and 7:00am he was sick three times, but they gave him a little medicine and started him on a regular dose of zantac to help with the acid in his stomach. That seemed to do the trick because by 4:00 in the afternoon he was eating a little, which he hasn't been able to even smell food since monday. Justin had fun playing with Ashley today. She hasn't spent much time here at the hospital because of a cold. Tomorrow grandpa and grandma go home but grammy and grampy come out.
I also forgot that Santa came to visit Justin and brought him a teddy bear.

Once again God bless all and thanks for the prayers.

Friday, December 19, 2003 7:03 PM CST

I am happy to report that today was a much better day. Justin had no fevers, his hives were not to itchy and he was only sick one time. He was full of energy and played a lot today. Justin thought he wanted to try a whopper jr. so grandpa ran to Burger King for the second time, the first was for a frozen coke for Justin, but when he came back Justin could not stomach the thought of eating. The last food Justin ate was the whopper jr. he had while getting his hair dyed on monday, but that is all a part of the chemo. We are now seeing more mouth sores which will continue to get worse over the next week or two. Now we play a game of waiting to see if Justin's body will accept the new blood and start making new cells. In the mean time we just try and keep him as comfortable as possible.

God bless everyone

Thursday, December 18, 2003 7:20 PM CST

Today was a very hard day because Justin woke up with a fever of 102.3, and vomiting. He battled the fever all day when the transplant came at 2:00 his fever was about 102.1 the tylenol was not helping. After the transplant (which was a bag of new blood) Justin's fever went up very quickly to 105.9 with sever chills. The doctors and nurses were all in here at the same time watching the thermometer, while mom, dad, grandpa and grandma were contantly changing ice packs and cold wet cloths. The doctors orderd demorol to stop the chills and viox to help the fever. It took a good two hours before it left a dangerous point. It is now 7:45 and his temp is 100.1 he is now watching a movie and feeling a little better except for the itchy hives. Maybe tommorw he will enjoy the small remote control car he recieved as a transplant gift from the hospital.

Thanks for all the prayers it could have been worse.

p.s. I have to change the web page because Justin didn't like the christmass trees.

Wednesday, December 17, 2003 7:55 PM CST

Today is what we call a boring day, thats when nothing new happens and no problems to report. Which is what the doctors here like, they say the boring kids are doing well. The hives from his ATG are getting a little worse, they are now from head to toe and can get pretty itchy.

Justin made some keychains with the child life specialist Julia today and he heard her say that one kid made them to sell so he tried to sell one to grandpa for $35 dollars. Julia also did some spin painting with him which he loved. I think he has made a good friend with her because he talks about her all the time, which if you know Justin it takes awhile for him to warm up to strangers.

There are no new pictures because we felt nothing could top those of yesterday.

Please rember tommorw at about 2:30 our time is Justin's transplant day and he could sure use all the prayer's sent his way.

Tuesday, December 16, 2003 8:12 PM CST

Today Justin had a good day. I know all of you are waiting to see the new hair, we have had fun changing Justin's hair just as much as he has. The nurses keep comming in just to see him, they have put snapshots up of him at the nurses station. He was even on the hospital t.v. show today so I guess that makes him kind of famous. Speaking of famous Justin recieved a hat from an organization called "cap's for kids" and it was autographed by Lance Armstrong, way cool.

Justin had his last dose of chemo today, we are so glad to see that behind us. He does though still have 3 more doses of the ATG which is the one that made him sick yesterday, but he has not reacted that bad for the last 2 doses. Justin does have a bad case of itchy, itchy hives from his reaction to the ATG which the nurse say's will probably last 1-2 weeks.

Transplant day is on thursday so please keep Justin in your prayers that this will keep him safe from this disease.

Monday, December 15, 2003 7:48 PM CST

Today started out great as you will see in the photos. We dyed Justin's hair green, but first we had to bleach it. He had so much fun doing this. Thats when things took a turn. At the end of the dying process the nurse gave him tylenol and benadryl as a pre-med for his ATG which can cause fever and body chills. The ATG is an immune supressent to try and prevent graft verses host disease. Well to make a long story short Justin came down with the fever and chills anyway, and he had a spell of vomiting with it. So therefore he has been pretty sick since about 1:00.

Stay tuned for more funny photo's tomorrow, if all goes well.

Sunday, December 14, 2003 7:35 PM CST

We are now through with 6 out of 8 days of chemo and he is doing pretty good. Today Justin started the day bright and early (6:00am) and seemed to be doing great. When breakfast arrived he couldn't wait to eat, but after drinking some milk he threw-up, but went on to eat his bacon. The rest of the day went very good after that. Justin was happy to see his aunt Angie and keep her busy. The doctor talked about maybe putting him on a nutrional supplement in the form of IV fluids, but we are trying to keep him eating as long as possible.

Saturday, December 13, 2003 7:17 PM CST

Well we had a little stumble today, Justin started the day out great. He was up and playing games early and ate a little of his breakfast. Later in the day he got to feeling bad and was given some medication to help his tummy feel better, but the problem with that was this medicine has made him sleep the rest of the day. We knew by past experience it would do that but we felt that we had to try. We now know that we will have to go a different route. It's hard to think he still has three more days of chemo, because we know it will only get worse.

We have no new pictures today because he has been sleeping most of the day. Please Keep Praying!

Friday, December 12, 2003 7:06 PM CST

Today was another good day for Justin. His eating was ok, not as good but we know it will slowly go down each day. We can see in his eyes that he is not feeling up to par, but he will not admit to feeling bad. He is still getting up to play basketball and other games, which I am sure is
part of what is taking his mind off from being sick.

Tomarrow Justin starts his other kind of Chemo and that is known to be hard on the kidney's, so we are asking for the prayers to continue. Thanks a bunch

Thursday, December 11, 2003 8:32 PM CST

Well we now have our 3rd day of chemo behind us and Justin is still doing well. His appatite is down just a little, but still eating very good. He was given a dose of lasic's because his weight was up a little and they want to make sure he was not retaining water.

People are just amazed when they go by his room because he is always up, wether it is playing basketball or playing dominos. We do relize that he will slowly start getting sick more and more each day, but for now we thank God he is doing so well.

This was a good day, and once again thanks for all the prayers sent our way.

Wednesday, December 10, 2003 7:23 PM CST

Well another day of Chemo for Justin. He is still feeling good but he is a little woozy when he gets up. Inspite of being woozy he is playing basketball a lot and playing dominos with grandpa. He is still eating but not as much as yesterday. We are training him to drink alot because that will be important during his second kind of Chemo which is hard on the kidneys, so he drank 40oz. of water
today.

Well it is know almost 8:00 and mom is tired but Justin shows no signs of stopping, as he is now playing cards with dad and grandpa.

He feels good! Thanks for prayers.

Wednesday, December 09, 2003 7:10 PM CST

Today Justin started his Chemo, he had four rounds of Busulfan. Justin woke up at 6:00a.m. and he was up and moving untill 9:45. It was another day of eating everything in sight because there was so many foods available to him that he hasn't been able to eat in the past year because of his low-fat diet.

Justin had to go to a different building, by way of a tunnel for a bone density test. The doctors told us his bones are built of an average size.

He still feels good!! Thanks for all the prayers.

Wednesday, December 08, 2003 6:55 PM CST

Today Justin started out by going bright and early for a mrs which is like an mri. The computers were down so he had a long wait before the test, in which he kept dad and grandpa on their toes. The test went good they said he was the best kid they had seen.

At 11:30 Justin was addmitted to the hospital for his central line, his bone marrow extract, and the lung wash.
everything went great he was taken to his room at 3:00. At about 5:00 he was eating sherbert and playing basketball. Justin was starving because he was not able to eat before surgery. When his dinner tray came he ate pepperoni pizza, icecream, milk, and some grapes. By 7:30 he was asking for his dinner.

He Feels good!!

Wednesday, December 10, 2003 6:32 PM CST

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