Journal History
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Friday, September 20, 2013 1:47 PM CDT
It will be 4 months tomorrow September 21 that Lucas passed away. Each day has its moments and some moments are very difficult. We've heard a lot of the cliche sayings the last 4 months but nothing makes it easy. You learn not to say much and just nod your head and agree with whatever you hear. It's just easier and less stressful we feel to handle those matters that way.
We have ventured out and are trying our hand at some new things. In addition to Dave's work, Samantha just started a part time job at Eddie Bauer at The Grove. She applied and got the job this week. We really like the store and she hopes this will work out with flexibility. Dave went to soccer referee school and became a travel/high school referee. He's been doing 4-5 games a weekend and there are the fall and spring season plus tournaments to work. Great exercise too. Samantha was concerned about some of the big mouth parents that he could encounter, but so far the abuse has been minimal. Lucas has taught us so much about courage and life that hopefully Dave can deal with some of the idiots without getting too upset. A family friend is allowing Dave to farm on his families land locally. For about 2 months, Dave's been clearing the land and getting it ready for the Spring planting. We have some fall crops planted, but the goal for next year is to work about 3 acres to have a little produce stand plus provide produce to our friends and a few local soup kitchens. He's very relaxed working in the fields and we know Lucas always wanted to farm with Dad. Abby is doing well in school and is working 2 days a week at the consignment store. We've been very busy planning her Sweet 16 party on September 28 and are really looking forward to it. She very much deserves a wonderful night and celebration. We still visit the cemetery 2-3 days a week and have finalized Lucas's memorial bronze stone. They just poured the concrete footer and except for the deer eating the flowers, we've encountered no more problems with his grave site. God Bless!
Sunday, July 21, 2013 11:57 AM CDT
It was 2 months ago today that Lucas passed on and got his wings. Since then, we have been busy with finalizing his cemetery memorial and finding a home for all his equipment, bed and supplies with other MLD families. We have given his wheelchairs to his old school Ladacin Network. It took us about 6 weeks to actually go into his room for more than 30 seconds at time, but except for getting things out of it, we haven't had the motivation to do anything with it. We took Abby and her friend to Disney for a week earlier this month. We stayed with Dave's sister and brother-in-law in Kissimmee and had a nice time there. It was very crowded but we were able to get around without having to deal with major lines, etc. Our days are filled with talking about the memories we have of Lucas and possibly what to do going forward. We've been to the cemetery 2-3 times a week. Something disturbing happened a few weeks back as a gopher decided to build his home right on Lucas's plot. It looked awful as all the dirt from the hole covered Lucas's marker, flowers and stone. Thankfully, the caretakers fixed everything and it looks much better.
We've been busy planning Abby's Sweet 16 party on September 28 and that has been a good distraction. Abby is doing OK and working 2 days a week. We've been for a few walks and local car rides, but the pain is still very fresh. Each day is filled with searching for a way to get through it. Those close to our family knew we gave up everything for Lucas and Abby and even though it seems now we can do things for ourselves, it doesn't help us. We have some ideas on what to do going forward for right now, but we try to find a way to cope with the loss each and every moment. God Bless!
Friday, May 31, 2013 9:15 AM CDT
It was a week ago today that we had Lucas's funeral service and he was laid to rest at Beth Miriam Memorial Park in Neptune Twp, NJ. Rabbi Michele Pearlman and Cantor Gaby Clissold of Monmouth Reform Temple performed an incredible, touching tribute to Lucas. We can't begin to say how many people were touched and inspired by the ceremony and the words that were spoken. It was a very rainy and cold day at the cemetery, but many family and friends braved the weather to be there with us. Many felt Lucas came into this world during a hail storm and it was fitting that his final day was a typical rainy, cold day like in London, his favorite place. There are so many people to thank for helping us during these past days and they know how much their effort and love has meant to us. Thank you to everyone who came to visit, sent cards of condolences, sent food, meals and donations. We continue to receive support and kind words of strength, but the recent days have been very difficult. We are trying to come to terms with the fact that all we knew since 2002 was caring for Lucas and being there day and night. We have only been in his room a few times since May 21 and have kept his door closed since then. The day Lucas passed away, our nurses took very good care of him and we felt this was the only day we hadn't put cartoons on for him. In honor of Lucas, we put on a cartoon and sat in his room with him for a while. We will keep trying to find a way to get through each day. God Bless!
Wednesday, May 22, 2013 9:52 EST
UPDATE ON SERVICES FOR LUCAS:
Thank you so much to everyone for writing, stopping by and dropping off food. Services for Lucas are as follows:
Friday, May 24, 12:00 NOON: Rabbi Michelle Pearlman will perform a memorial service for Lucas at the Monmouth Reform Temple, 332 Hance Avenue, Tinton Falls, NJ with Bloomfield-Cooper Jewish Chapels in charge. (Exit 109 off GSP, turn left going east on Newman Springs Road/520. Road will go down to one lane at construction on bridge and next light take a right onto Hance Avenue. Temple is about 1 mile down on the right just after a Church.
Immediately after the services at the Temple, we will have a procession to Beth Miriam Memorial Park on West Bangs Avenue in Neptune Twp. There is no address or as they told us, approx. 2400 West Bangs. If traveling east on West Bangs, the memorial park is on your left side with the name at the front. There is no building, no above ground grave stones, only in ground memorials and it is a small area. If you go over Route 18 while on West Bangs, it is about 1/2 mile down on left across the street from another Jewish cemetery that has above ground markers.
Right after the services at Beth Miriam, our friends from Little Silver are hosting a Repast/celebration of Lucas' life get together at 3:00 at the Little Silver Firehouse, downtown on Prospect Avenue.
Sunday, May 26, from 1-4 p.m. We are holding Shiva at our house on 63 Silverton Avenue, Little Silver (732)741-3181 and everyone is invited to stop by and visit with our family.
Once again, we deeply thank everyone for your love and support at this time. God Bless!
TUESDAY, MAY 21, 2013:
Lucas peacefully passed away at noon. He fought to the bitter end and is no longer suffering. We know he is with God and bringing that incredible smile and laugh to Heaven. Our family wants to thank everyone for your love and support. God Bless!
Tuesday, May 21, 2013 1:57 AM EST
We are leaving a brief update. Lucas has been struggling the last few days, however, late Monday morning he took a very fast turn downward. We have been trying all combinations of medicines and in constant communication with the Hospice Unit. They sent out a nurse around 11 Monday night and she basically informed us that his body is now shutting down and all we can do is continue with the morphine, etc. to keep him comfortable. We are keeping him home and have been staying with him through the night. Lucas truly needs all the prayers you can give right now. God Bless!
Thursday, May 9, 2013 6:36 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
The same story with Lucas hanging in there each day and night and making it to the next day. Back in February, we were told to get prepared and make funeral arrangements in the event Lucas should not make it. At that time and even today, he's struggling to stay alive and his body is fighting very hard and on Monday, May 13, Lucas will be turning 19 years old. He's had some wounds that have been taking their good old time healing and may never fully heal. We want to thank our family friend and old neighbor Jeannette for lending her wound care skills in helping us care for Lucas. He's still very tired, has numerous seizures and is filling up with fluid. Moving to change him is more difficult. He chokes more and more each day and continues to desat into the 70s and then he comes out of it. We have reduced his feedings to deal with fluid building up and have to still maintain his nutrition. He's on constant feeds during the day only and typically falls asleep at 10 pm and wakes up most days around 10 am. He may wake up during the night and have a breathing episode, but he seems to not be having any pain and is comfortable. This was our goal with Hospice and we feel very strongly that it is working out well for Lucas and us.
We sold the handicap van to another MLD family from NJ and passed on the help our community gave us. It was very difficult to come to terms and realize Lucas will never get out of bed and probably never will be in his wheelchair, let alone trying to use the van to take him anywhere. The time was right to let it go and help another family not have to deal with the cost of these types of handicap vans. We have decided to not have a nurse on Sunday and keep that day to us. The other 6 days we can have a nurse for 6 to 8 hours and they have sent over some new nurses that have worked out well. We plan on having a quiet birthday for Lucas and feel very blessed to still have him in our lives. We love him so much. God Bless!
Sunday, April 14, 2013 6:58 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas continues to hang in there and battle all day long with everything. He's had a few severe breathing episodes and he's managed to bounce back, but it is taking him longer and longer each time to regain his breath. His urine output is below normal and of concern, but we're doing everything we can for him. He's very tired and weak. He still doesn't recognize anyone and has numerous absence seizures throughout the day. He is in bed all day and we've decided to no longer hold onto to the handicap van and have found another MLD family that can benefit from it. Moving him in bed to be changed has become more delicate and we can really feel and see more than ever how weak he is and we are very convinced to just keep him in bed from now on. As we've said in previous updates, hospice tells us that Lucas is in charge of everything right now and he's in charge of what happens. Through all of this we haven't mentioned about Abby. She's doing fine in school and with dance and has been working at Cottontails consignment shop in Tinton Falls and enjoying the added responsibilities and having her own money to spend. God Bless!
Thursday, March 28, 2013 4:14 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Since last update, Lucas has been holding his own and to a large degree defying the odds. No sooner does he start to build up with fluid and have severe breathing episodes, he bounces back. Things come and go and come back with him. As hospice explains, it's the ups and downs, but his heart is still working very hard. Even with oxygen, he still has some Desating episodes, but he comes out of them. Hospice feels his heart and kidneys are slowing down. He's still very weak, sleeps on and off all day long and has many absence seizures throughout the day and night. He doesn't recognize anybody and is simply content with his TV. We don't anticipate ever moving him out of bed and it's been a constant battle keeping him comfortable and his skin looking good. We call it "Lucas's Roller Coaster Ride" and we're trying to keep him pain free and comfortable. We're always in there and want him to know how much we Love him and proud of him we are. God Bless!
Sunday, March 10, 2013 2:18 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Things have stayed about the same for Lucas since last weekend except for a few very severe breathing episodes where he desated into the 70s and took several minutes to bounce back from them. This morning's episode was very tense and frantic. We can only increase his oxygen, suction him and hope that he gets through it. The hospice people feel he will get more of these episodes. Lucas is very sleepy and is having more and more absence seizures, but no more grand mal seizures since 3 weeks ago. We have cut back on his feedings and have slowed them up considerably and they have helped with keeping the fluid buildup from not getting worse. We truly appreciate all the postings, offers to help and support from everyone. God Bless!
Thursday, February 28, 2013 5:58 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We've been experiencing the ups and downs with Lucas. On Tuesday, he had his eyes open the most in 2 weeks and he smiled a few times. Yesterday, he was de-sating in the evening and we had him on 5 litres of oxygen, and most of the day he wasn't alert and slept most of the time. He was working hard to breathe. We believe his body is getting used to the Keppra and he's back to his 12-15 focal seizures a day. The same old issues that he dealt with, skin, trouble moving, etc. are still problems, but he has good moments and then most of the time he's not with it. We continue giving him Ativan around the clock and watch him stubbornly get through the day. We sleep in his room each night and check on him every few hours. To be told what to expect at the end of life and that Lucas is now in charge of things is very strange to deal with. We don't want to see him suffering and struggling anymore, but he's going to be the boss of what happens. As we said before, we've made plans with the Synagogue and then we realized we had nothing to wear. Dad needed a new suit and Mom needed a dress. We're trying not to feel like we're giving up on the situation, but more than ever at this time, we don't want Lucas suffering anymore. Even though they told us that we will see the ups and downs with him and that he doesn't have much time left, we try to be realistic with the whole situation. Our families came down last week to visit with Lucas just in case. We put his wheelchair away and have taken his lift system out of his room as we feel he is too weak to get out of bed again. It means a lot to our family to know that many of you are thinking about Lucas at this time. God Bless!
Friday, February 22, 2013 10:26 AM CST
THANK YOU FOR CHECKING IN ON LUCAS AND ALL THE SUPPORT, POSTINGS AND PRAYERS AT THIS TIME:
The hospice team met yesterday and our hospice nurse Pam came by this morning. Right now the game plan is to simply keep Lucas comfortable with Ativan every 4 hours and Morphine as needed. He actually had a good urine output yesterday and overnight, but he's working very hard to breathe, is zoned out and sleeping most of the time. He may open his eyes slightly but he is just looking into the sky. He doesn't look at you anymore. We are sitting with him all day and night and our nursing was just increased to 12 hours a day. Pam sat with us and checked Lucas out and simply said Lucas is controlling the situation now and nobody can predict when it will happen. We've been to see the Cantor/Rabbi at Monmouth Reform Temple in Tinton Falls to go over funeral arrangements and our Cantor agreed at this time it makes a lot of sense to be prepared. Once again, we truly appreciate all the prayers and support from everyone. God Bless!
Wednesday, February 20, 2013 7:20 PM CST
UPDATE ON LUCAS WEDNESDAY, FEBRUARY 20:
Lucas came home yesterday, Tuesday, from hospice. He is not doing well right now and his breathing is very labored. The oxygen and Ativan are helping him rest. The hospice is meeting tomorrow morning to discuss Lucas and what to do, but our hospice nurse has indicated that we may have to bring him back to the floor for his remaining time. Very hard and painful to be so blunt but he is struggling right now and is not coherent. His body is too weak. We met with the Cantor today to discuss what to do if Lucas doesn't make it. In almost 11 years, this is the hardest update we've had to do. We thank everyone for all the support and love these last several days and 11 years.God Bless!
UPDATE SUNDAY FEBRUARY 17, 2013:
Last night at 8:30 pm Lucas was watching TV and his eyes began to twitch and he went into a grandmal seizure. He desatted to the low 80s and heart rate shot up to 150. He was shaking and eyes were flickering for about 75 mintues. We called hospice and used his emergency hospice kit. We gave him Ativan, we gave him suppositories and kept trying to get him out of it. While on the phone with hospice, they were sending over a nurse, but we called our friend Dr. Brian Rogers, OBGYN and he came right over. He's dealt with these issues in the OR and could see Lucas was struggling and he helped us with additional medicine to stop the seizure but nothing worked. He was able to give us confidence to deal with the situation and Lucas's vitals were not too horrible as time went on. The hospice nurse then called 911 as they wanted Lucas brought to the floor to start IV seizure meds. He made it to the hospice floor and the seizure had stopped but he was out of it. Seeing his oxygen go down with us pumping in 4 liters and to see his heart rate climb was terrifying. Right now after a few doses Keppre he's spasming and incoherent. He looks up into the sky and doesn't show signs of even knowing where he is or any of us. No one knows the damage that may have been done, but right now he's hanging on. Will see Monday how he's doing on the Keppre through his Gtube. He's fighting hard to breathe even with the oxygen. GodBless!
Sunday, January 27, 2013 10:47 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
Last update was January 9 and things have slowly gone down hill for Lucas. So many issues to mention, but nothing is getting better for him. It's become very difficult to move him in bed. We believe he has either broken or dislocated his right knee and it has swollen up. His breathing, heart rate, fluid, etc. have gotten worse. The main thing is the amount of seizures and types he's getting. He had these type a while back where he starts laughing for no reason or at things that aren't funny. And then things that used to make him smile, don't work any more. Most of the day he rests quietly and makes little to no reaction to anything or anyone. He's coughing a lot at night and we're in there several times checking on him. He gives no indication anymore that he has a bowel movement and we have to check him very often. Last week his urine output through the foley catheter on some days was only half of what it should be, thus him retaining fluid. We try our best to get him up so that the fluid can move. Our regular hospice nurse came last week and basically reiterated what the doctors had said in that the time with Lucas is very special right now and to enjoy what time there is as best as we can. His body can't take the strain and stress anymore and we just see him getting weaker each passing day. God Bless!
Wednesday, January 9, 2013 10 PM CST
THANK YOU FOR CHECKING IN ON LUCAS! JAN 9, 2013
Lucas got over the shingles last month but the last few weeks have not been going well for him. Things just aren't getting better and he's having more severe problems with fluid, breathing and seizures. Our hospice doctor said a few weeks ago that things are turning for the worse for Lucas and we didn't feel it was appropriate to hear that at the time. But yesterday at Monmouth Medical with Lucas getting his Pentamadine IV, Dr. DeGroote was very taken back with Lucas's appearance and overall health. He said it's hard for us to see anything since we're with him all day, but he feels he's drastically regressed since 4 weeks ago. He ordered a chest Xray that didn't yield anything different from his last Xrays, but he feels overall that Lucas's body is beginning to shut down and that he kind of agrees with the hospice doctor at this time that medically, Lucas is just getting worse. We're almost maxed out with his blood pressure meds and we have been getting high readings of 130's over 110's, but with everything else going on it's becoming more and more difficult for him to stay alert. He has low respiration and high heart rates also. We're still getting him to school each day he can and he still enjoys his cartoons, so for right now he's just hanging in there. Also, thank you for everyone who sent cards and dropped off gifts to help us with the holidays. God Bless!
UPDATE DEC 15, 2012:
Lucas had his Pentamadine IV Tuesday over at Monmouth. Dr. DeGroote was concerned with Lucas's breathing and addressed that he probably has Ascites which is accumulation of fluid around his stomach. Basically his heart is not pumping the fluid throughout his body efficiently and believes it is additional MLD disease progression. After a consult with the Hospice Unit, it was decided to do nothing in regards to draining/tapping it as all parties feel it would come back and we know the meds available for this haven't worked for Lucas in the past and caused more complications. In getting him changed Wednesday morning, we notice a blister on his side that was similar to one 9 years ago when he had Shingles. Our regular nurses and hospice nurse who came agreed that it looked like shingles. Dr. DeGroote and Dr. Mari agreed that since Lucas has been taking Acyclovir ever since he had Shingles back then, that is probably why we only see one blister and it's just a mild case of Shingles right now. They feel that the medicine is preventing it from getting worst. We have options if it gets worst for increasing the Acyclovir and give him Motrin for pain. Right now he's home in bed and amazingly through all this he's enjoying his cartoons. In general, he's been struggling more lately with breathing and we have give him oxygen on and off during the day. God Bless!
UPDATE NOV 28, 2012!
Lucas has been having more and more difficulty breathing. Our regular nurses and hospice nurses are concerned and our hope is that this is not his new baseline now. With his sleep apnea, it also appears neurologically he is forgetting to breathe and de-sating more often during the day also. Keeping oxygen on him late afternoon into the evening and of course the nighttime is more common than not right now. He has had a cold and cough so our hope is that he will improve and go back to his normal baseline and not stay here. It's become a daily struggle for him and some nights haven't been any better. With the colder weather settling in, it's been more difficult taking Lucas outside because of his breathing. We cover his mouth with a towel and only get him in the van after it's been warmed up for a while. There really isn't much we can do to make him more comfortable, but through it all, he has his moments during the day of enjoying TV and especially today when his class went to the mall and he saw Santa Claus. He was so happy and smiling getting his picture with Santa. He's been getting to school practically every day and he's had some good days with Art class. We feel just getting him out of bed once a day is all he can tolerate anymore and staying home if not in school is better for him. The Foley Catheter is working well for him and it has kept the fluid off his legs. We are still closely watching and taking care of some wounds on his elbows and lower back. It's hard to believe that 10 years ago this week, Lucas was at the University of Minnesota preparing for his Cord Blood Transplant and he is still on steroids to this day.
On another note, it's been a long month after the hurricane. Things are still bad in the general area with debris and rubbish on the streets. After helping with friends in town, what energies we had were devoted to helping out in the Highlands by Sandy Hook. It's been a long road for many people these past weeks and we pray that their lives can somehow regain some normalcy. It's very cold for many and even though power has been restored, most lost their heating units and can't remain in their houses. We understand with Lucas over these years how difficult it is to see hope when times seem hopeless, but you dig deep and struggle to survive one day or sometimes one hour at a time and we hope and pray many of the people we've met can gain strength from all the volunteers helping from near and far, like we have from all the people who care and love Lucas. Our family will be there for those people who are trying to find hope in anything right now. God Bless!
Tuesday, November 6, 2012 9:54 AM CST
THANK YOU FOR CHECKING IN ON LUCAS AND OUR FAMILY!
It's been a long week and half and Lucas and we are doing OK. Unfortunately many of our friends are going through some terrible times right now. Stayed home through the Hurricane and lost power in the evening like everyone else and the generator came on. Hospice contacted us a few times about bringing Lucas in but with the generator we could stay home. We didn't receive any damage and got power back last Friday. Been using our home for friends to stop over charge things and stay for a while and work. Kids are staying over. Been to help our friends over by the the water and see the total devastation. It's very difficult for them and the stories of price gauging for apartments and living space is widespread. It's hard to comprehend that so much devastation has taken place a few minutes from home. The same community that has been there for us for 10 years is there for our friends. We can't say enough about the people where we live and many friends kept checking in on us even with the generator. Abby is keeping busy with friends and no school until next week. Lucas has been having some issues and up at night several times but he's doing alright. We ask for your prayers for our friends and neighbors and nearby communities to get through this. It is cold here for our friends and anyone who checks in on Lucas is more than welcome to come and stay with us or stop over. If any of other MLD families still don't have power, please call us at 732-741-3181 and you are welcome to come here. We have all the medical equipment and demand that no one stay in the cold if you can make here. God Bless!
Wednesday, September 26, 2012 12:47 PM CDT
UPDATE ON LUCAS:
Lucas has developed some severe congestion and we're back to using the Nebulizer and Valium to keep him comfortable. Not sure what's going on right now or what brought this on but he's been struggling to be comfortable the last few days. God Bless!
It was 10 years ago today, September 23, 2002 that Dr. Barabas, Neurologist called us back to his office after he had closed, sat us down and proceeded to tell us Lucas has a terminal, genetic disorder called Metachromatic Leukodystrophy. Lucas' prognosis was not good and 10 years later he still struggles every day of his life to stay alive. To care for him and watch him fight each minute to hold on to what little quality of life he has remaining is truly amazing. Abby, Mom and Dad are unbelievably proud of his courage and will power. God Bless!
Friday, September 7, 2012 9:31 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
In the past, we have spoken about all the support Lucas and our family has received, especially here in Little Silver. It is with heavy heart that we mention the passing of a family friend in town, Jonathan Bitman age 52, from Pancreatic Cancer. Jon was there for fundraisers, home improvements and the installation of our generator. Last summer he made Lucas's day by bringing his friend John C. McGinley (Scrubs) to our home to visit Lucas. We remember Jon being so happy to see how happy Lucas was and the fact that Lucas doesn't have many good days, but that visit he made happen was a wonderful day for Lucas.
Lucas had his Pentamadine IV on Tuesday and Dr. Fisher saw him. She hadn't seen Lucas in about 3-4 months, but she felt his breathing is more compromised and his overall health has slipped since the last time. We know things have been much tougher for Lucas. The nurse again got the IV in with one stick and suggested that we have a longer Foley catheter put in Lucas. Dr. Fisher gave her the orders and the catheter is more secure on Lucas and gives us plenty of slack to move and change him. We have lowered Lucas water intake with his feedings in hope of cutting down on the Edema. So far his weight has stayed the same. We are closely monitoring his nutrition to see if lowering the formula will help better. Our hope is to get his weight down from 77 lbs to about 72 lbs so his breathing and rolling when we change him will improve. Lucas started school on Wednesday and is in the same class with a few new kids. We have been noticing Lucas is having more frequent seizures some of them lasting more than usual and harder to get him out of.
Abby started her 10th grade year at Red Bank Regional and so far enjoys her teachers and classrooms. She's again in the dance academy and is doing fine. God Bless!
Monday, August 27, 2012 6:15 PM CDT
UPDATE AUGUST 27:
On Friday our hospice nurse came to put a Foley Catheter in Lucas and she couldn't get it accessed and we decided to wait until today. She came this morning and was able to get one in Lucas and its been working fine so far. Game plan is to keep it in Lucas for the foreseeable future and hope it takes the stress from his body and keep his heart rate lower. She gave us some bags that we have to attach when getting him out of bed that will lay on his leg. Lucas has not been himself lately and things just seem to be harder for him.
On a side note, Mom and Dad celebrated their 22nd wedding anniversary yesterday and we're grateful we have each other to get through a day. God Bless!
AUGUST 22 UPDATE FOR LUCAS:
Since last update, Lucas's weight has been fluctuating and so has the dose of his diuretic we've been giving him to take off the fluid and reduce the Edema. It has caused an increase in his BM's. For the most part, he doesn't moan or grunt when he has a bowel movement and we can only rely on checking him very often. He was very good about moaning with a BM, but not any more. We have been adjusting his dosage and have been contacting our hospice nurse and doctor almost each day. The dose he is up to now still is not getting any extra fluid off him and we are lucky if he urinates two times a day now. His weight is up to 77 lbs. He's not very comfortable that much any more and we must keep close record of the amount of each urination and BM for the docs. Lucas is finishing summer school this week and he'll be back after Labor Day. We have seen the regression with him much more these past few weeks. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas had his Pentamadine IV on Tuesday. We are able to weigh him in bed and normally do it the day before the IV to give them his weight for the amount of the IV dosage. We saw about 77.5 pounds, up from 74 the other day. At the hospital, Dr. DeGroote came in and saw Lucas in good spirits, which he hasn't seen in a long time, but he also felt his face was more swelled and his legs looked puffy again. Lucas has been retaining fluid again and the Edema has increased. Getting Lucas to urinate has been a challenge lately, but they wanted to put Lucas on a diuretic to reduce the fluid in his body. They put Lucas on Hydrochlorothiazide. After two doses, his weight is back down to 74 pounds, but he has severe diarrhea and his bottom is very sore. We are watching him very closely and checking him often. Mom will call the doctors Monday to see what options at this point. It's a vicious cycle for Lucas to have to give him a new medication to fight one thing and we know for a fact it's going to cause other complications. He still sweats from his head a lot and his body is constantly clammy feeling even with the A/C and 2 fans in his room.
We have been getting Lucas to school each day possible and he's very tired when he comes home. The only movement of his body he had left was raising his right arm and that has stopped. A few months back, he could lift his right arm and chose a DVD to watch or point to something and that is all gone. He used to wink more often when we asked him a question, but he doesn't do that any more. We believe this is disease progression. He still laughs at some TV shows, but very rarely does he acknowledge anybody when they approach him at school or at home.
We are finishing our 3rd week of nursing and things have been going well with that. We have nursing on weekends, which we haven't had since last year. The main difference these days is that the other hours (mostly night time) of the day without nursing have become more difficult and tiring. We still have our hospice nurse come out each week to check on Lucas and see if we need supplies, etc. We know they could come out 24/7 if an emergency occurs with Lucas. God Bless!
Thursday, July 19, 2012 3:58 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas took the Cipro Antibiotics and followup urine and stool samples showed that the Urinary Tract Infection was gone and that the Cipro did not cause C-Diff diarrhea. He has been perspiring a lot lately, mostly on his scalp. He's gone to school every day possible except for yesterday's 100 degree heat. We've been doing everything possible to keep the house comfortable for him and he's managed to get through the last 4 heat waves. Everything has been moving along with hospice and our nurse Pam has been out twice to take both urine samples via catheter. It's gone well without having to take Lucas to appointments and the timing has been great with this heat.
Things have moving along with Medicaid. After a few weeks, we were informed yesterday that our nursing is coming back next week. It's approved for 8 hours a day, 7 days a week with no limitation. Our medicaid case worker said that this in addition to him having hospice, so a few things have worked out with Lucas turning 18. He's still restless at nights and no rhyme or reason why some nights he sleeps and others he's up 2-3 times and requires meds to get back to sleep. We are in the process of making an appointment for Lucas to see an eye doctor as we're not sure how well his vision is these days. For some reason, he's gotten very selective with TV shows and our arsenal of Netflix, DVDs, DVR, etc. has dwindled to only a few shows he likes. His heart rate sky rockets with Pokemon, but he's really only enjoying a few shows and will moan constantly if he doesn't like an episode. Overall, his skin is a constant battle but it's not doing too bad this summer. We believe just parking him at the higher steroid doses and not fooling around with it has probably been good for his skin overall.
Abby has been very busy this summer with friends and working 1 day a week at Lucas's school. She has been helping out a lot with Lucas, enabling one of us to run errands. God Bless!
Wednesday, June 27, 2012 7:58 PM CDT
Thank you for checking in on Lucas!
In our last update we had mentioned that Lucas is now under the care of the hospice unit at Monmouth Medical Center. Receiving some supplies and some equipment has gotten more convenient under hospice as opposed to dealing with separate vendors and insurance. Once something comes under the hospice coverage, they order it for us and no hassle. We haven't had to worry if providers or suppliers don't take our insurance anymore. We use the hospice vendors and providers and we know where we stand. Many times in the past we had deal with Lucas's feedings not being covered and converting to out of pocket, but that's over now.
Last week we started to smell a foul odor with Lucas's urine. Sometimes he'll just pee in his diaper and others we're able with commercials on TV to get him to pee in a urinal. Our nurse Pam was just out to see Lucas and came back the next day to catheterize him and get a urine sample to take back the Monmouth Medical. The other day we got the results and it showed that he has a Urinary Tract Infection (UTI). Dr. Mari started him on Cipro antibiotics along with Immodium to help with the additional diarrhea Lucas will probably get. His skin and rash is a constant battle to keep moisturized, but it's not too bad as we're no longer trying to lower his steroids. The hot weather is very challenging for Lucas as his head and back are constantly wet from sweating even though we keep the house cool and comfortable for him. Due to his UTI, we had to cancel his Pentamadine IV for tomorrow until next week.
Lucas is off from school until July 2 in which Abby will be starting to volunteer at school in the younger classrooms. We again appreciate all the support and prayers for Lucas and our family. God Bless!
Wednesday, June 6, 2012 8:45 PM CDT
In our last few updates, we mentioned several people, businesses and of course all the volunteers and people who pledged for Riding for Lucas and we again must mention how fortunate and blessed Lucas and our family has been. It's amazing how generous so many people have been to us and to see some of the checks from places like Neveda, Texas, Colorado, etc. is very humbling and appreciated. Thank you!
In our last update we had mentioned that we had a meeting with a nurse practitioner from the Monmouth Medical Hospital Palliative Hospice Unit. After considering what Hospice could do for Lucas and us now, we decided to sign him up. His care is now directed by our doctor Dr. Mari along with the staff in the hospice unit. He more than qualifies to come under their care and we weighed what was best for him at this point. Generally, we are no longer taking Lucas to CHOP and we contacted them to inform them of our decision and they agreed it was best for Lucas right now and would help in any way they could. Basically, a visit to CHOP for Lucas takes 8 hours and he's on an examining table for 1 hour of that, but it's too long a day for him out of bed and he pays dearly with spasms, etc. the next few days. It's a stressful ride for him and for us trying to get him home. From now on, Lucas will be admitted to the 6th floor hospice unit at Monmouth. No more emergency rooms, however, so far they prefer that he still get his Pentamadine IV at the Pedi Day Stay at Monmouth. At the point of our decision, we did not have nursing and with hospice we have access to a nurse 24/7 who come out to our home as needed. The nurse can come out and put in a Foley Catheter if he's not urinating and other procedures. Our nurse Pam, comes out to see him once a week and she has drawn his labs at home. No more going to LabCorp. Basically, we've cut down on many appointments for Lucas. We have a home health aide, Jackie, who comes out in the afternoon from 4-6 3 days a week right now. We have social workers who deal with our insurance company, etc. Some of Lucas's meds come under hospice along with some medical equipment. We've already gotten new oxygen tanks, a new concentrator, new feeding pumps and a different supplier. It seems like mostly anything we need they supply it. In our discussions with the nurses and Dr. Mari, they agreed with CHOP's feelings on Lucas being unable to receive CPR or be intubated for surgery due his brittle bones and many other complications, so we signed all the DNR papers as required. However, if something makes sense to have done for Lucas, we can pull him out of hospice and put him back in when appropriate.
With all that said, Lucas was approved for SSI and Medicaid 2 weeks to the day we applied and one week after hospice. Medicaid will be Lucas's secondary coverage, but we're now in the process of learning what that will cover. One of the issues we had to deal with was that if Lucas ever got Medicaid, he could start receiving nursing, but it appears that you can't have home care nursing and be in hospice. If we did nothing and got some nursing through Medicaid, Lucas couldn't be treated at Monmouth and we'd be back at CHOP. It's too complicated to go into details and explain the whole situation, but we're very comfortable right now with our decision and feel it's best for Lucas. Mom and Dad have been doing this for 10 years with all the changes Dad has made to avail more time and energy for Lucas and the family, we will make this work. No matter what we would have decided, the days and nights are very long and tiring in caring for Lucas, but we don't have to travel anymore.
In the last month, we've had many things going on with the guardianship, Social Security Insurance/Medicaid, hospice changes, and getting used to not having nursing the last 6 weeks, but this is what happens with Lucas turning 18.
On Tuesday, Lucas had his Pentamadine IV at Monmouth and they used a new vein finding machine on him and it didn't work. The nurse did find a vein with the help of the PICU doctor. We did not give him Zofran and except for a little diarrhea, Lucas did a little better than the last few times. We did go up and visit the hospice floor and meet everyone we've spoken to on the phone. They informed us that we can bring Lucas in for 5 days of respite a year. Game plan is for Dad to stay with Lucas the whole time and Mom and Abby get away for a few days this summer maybe to New York to stay with family. Overall, Lucas has been more tired lately, still waking up during the night and not moving his right arm as much. It's still hard to keep him happy with TV and we never know what he'll like at any time. He's been sweating more lately, even if his room is cool. This seems to be common among other MLD kids. His backside is a daily challenge to maintain and some days he will bleed in that area. It has come down to simply keep applying Balmex to the region as we can't keep Lucas on his side for more than a few minutes to give his bottom some air.
Abby is finishing her freshmen year at Red Bank Regional and has her dance recital from dance school this Sunday. She's enjoyed being a part of the dance academy at RBR and wishes to continue in the program. It's been a very good year for her in school and that has been good for all of us. Right now she will be volunteering this summer at Lucas's school (Ladacin/Schroth in Ocean Twp) 2-3 days a week and will be working with the OT, PT, and other duties. Abby's excited to start and we'll also need her with helping us with Lucas. She's hoping to do baking at the school in the kitchen for the students and staff.
One final note. We started this update in explaining how much we appreciated everyone who has helped us, and we want to thank Central Jersey Mechanical and Pete Blewett. Whenever we have needed plumbing work done, Pete has sent over his best man Anthony and they have never given us a bill. We appreciate all they have done since we moved in back in 2003. Everyone's generosity and efforts have enabled us to give Lucas the time and energy needed to keep him going and we truly know how blessed we've been through all of this. God Bless!
Thank you for checking in on Lucas!
We've had some very busy days recently and making a brief update.
Riding for Lucas (ridingforlucas.org) was held on Saturday and was very successful. Dad and Abby were able to get to Val's Tavern in Rumson to see the 50 mile riders take off and we were back at 2 for the festivities put on by Chris and Linda Smith for all the riders. Those who did 2 mountain bike tours also completed 51 miles and arrived back for the festivities. Mom stayed home with Lucas with our neighbor Carrie on call to help. It was a terrific day and we can't thank enough Ben and Kim Willemstyn, all the dedicated riders and financial support from so many people who pledged to our family. We are truly blessed to have so many good people be there for us.
On Sunday, we celebrated Lucas's 18th birthday with family. Anyone that drove by our house saw a large banner in the front yard of a lobster wishing Lucas a happy 18th. Thanks Doug. Thanks to our friends Judy and Cathy for cooking for everyone and the Pie Shoppe for Lucas's cake. It was a special day for Lucas, one that may not have seem possible 10 years ago.
Lucas has been more tired lately and still having some episodes of moaning. He had his Pentamadine IV last week and we gave him some Zofran to help with the nausea, but he had severe diarrhea the next 3-4 days and realized that Zofran can cause diarrhea, and it did. We won't do that again. Unfortunately, after getting the back of his head to heal better, we continue to treat another Stage 2 split on his bottom. The diarrhea last week didn't help and we must monitor it closely.
We are in the process of changing Lucas's primary care physician to our doctor of 22 years and he had some suggestions about looking into hospice at Monmouth Medical Center. He made some calls and yesterday they sent out a nurse practitioner who was very informative and understanding of our situation with Lucas. She was very thorough in explaining how things would work and our options and we are now trying to digest everything and weigh whats best for Lucas right now. God Bless!
Wednesday, April 25, 2012 9:35 PM CST
UPDATE WEDNESDAY APRIL 25:
Since last update, it's become very difficult to keep Lucas settled. There is no one cartoon that he will watch from one day to the next. He has continued his moaning/grunting episodes where every 3-4 seconds for sometimes 4-5 hours at a time he'll moan even through 10-15 cartoons that he used to enjoy. He may settle for 3-4 minutes and enjoy something, then start moaning and we'd try something else. The days have been long for him and we contacted Dr. Magnussen to discuss options. He told us to double Lucas's Xanex in the evening and although he still has bouts of moaning, they're not as long plus he actually slept through the other night which hasn't happened in a long time, but he was up the next night 2 times. He's been going to school each day and has had some very good days of late. On the days we haven't had nursing we've gotten him to school a little later and kept him there until the end of the school day. He's been able to participate in school activities and has been having better days. On that note tomorrow is our last day of nursing for the rest of the year. Maybe when Medicaid kicks in, it may resume, but it will stop officially tomorrow. In trying to figure out why these moaning episodes have started and become so difficult to deal with, we are blaming going back on the steroids for this new phase. Also, the sore on the back of his head has practically healed and we've been folding towels and placing it behind his neck to elevate his head for the back of his head to breathe.
We met with the court appointed attorney today for his guardianship and that went well. She is going to recommend that we not have to go to court due to logistics with Lucas's care. We want to thank Tim Dengler for handling the legal matters with the guardianship for our family. Also would like to thank Steve Smelz and Fred at Seaview Jeep for taking care of Lucas's van. Several times they have repaired whatever and when we pick it up, there's been no bill. We've been very fortunate with all the help we received especially after the heavy expense we incurred with the sewer line backing up and all the plumbing that had to be done. We were fortunate we caught it in time and it did not come n the house, but it was still a mess, but we got through it. Also, a reminder on May 12, the 2nd Riding for Lucas will be held and you can visit www.ridingforlucas.org to see the video put together by Ben Willemstyn.
Abigail has again made honor roll at RBR and has her 2nd dance show at school Thursday night and Saturday afternoon. She's been baking away and was given some personal instruction on various techniques by Tom Caruso of the Ye Olde Pie Shoppe in town. Tom's always helping us out.
On a final note, Lucas will be turning 18 on May 13 Mother's Day. God Bless!
Update Tuesday, April 3:
In our last update, we had mentioned that Ben Willemstyn is having another fundraiser for us "Riding for Lucas II" and he has just put on the website a beautiful video of Lucas to the song by Paramour "The Only Exception." Please visit www.ridingforlucas.org.
Lucas's weight has gotten back to normal and his skin and rashes have cleared up with the steroids and some new creams. The main problem the last few weeks is that Lucas has been very difficult to console and keep still. He's been up all nights, 2,3,4 times and it takes us 1 or 2 hours to get him back to sleep. He will pull his breathing nose cannula off through the night. During the day he will have moaning episodes that could last for hours and he would moan every 3-4 seconds non stop. It's become impossible to find something he likes to watch and we could go through 6-7 shows that used to settle him before maybe he likes one. Even then, he may like only a few minutes and then moan the rest of the time. It's been exhausting the last several days and we don't know why this is happening now. He moves his head from side to side and we notice a open sore on his bald spot and we've been applying ointments to stop it from getting larger. The only thing we have noticed is that a few times we have had him up twice in a day and he was a little more settled, so we're going to try and get him up around 7 at night for a bit and see if being in his chair a 2nd time is tiring him more. Plus, it gets him and us out of his room. His last lab results were good enough that Dr. Magnussen said we could stop getting them weekly and go back in 4 weeks for a followup. With our nursing stopping in a few weeks, logistics will change and we feel very strong that it's been best for Lucas to always have 2 people help with changing him and moving him, especially now that he's back on high doses of steroids and he'll probably experience more weakening of the bones. Dad has let go some more work, especially for this time of year to help Mom with Lucas and be there for getting Abby where she needs to be. We manage the best we can. God Bless!
Saturday, March 17:
Lucas's weight has steadily come down this week from 80 lbs last weekend to approx 73 lbs Friday. The edema is practically gone and after 9 days of prednisone, his body is getting back on track. The main difference is with the high dose, he's been much moodier and very hard to please with TV shows. We can go through 6-7 shows before he settles in on one. He's been up most nights several times and up early in the morning. About 3-4 weeks ago, he was sleeping until 10 am and now he's rising around 5-6. He had his weekly labs done Wed, but we haven't heard back yet from CHOP on the results. He's been to school each day possible since coming home from hospital last week. He's been more alert and responsive which goes to show how much he needs his steroids to keep his body going. One of the theories was that after getting him off steroids and starting hydrocortisone, his adrenal gland was starting to shut down which caused the edema, etc. for the last month.
On another note, Abby has been doing well in school and dance. Also, Ben Willemstyn from town is organizing another fundraiser for Lucas with the 2nd Annual Riding for Lucas to be held on May 12. Ben called some time back and mentioned that most of the bikers wanted to hold another bike riding event for Lucas and we were extremely grateful and humbled that they are always thinking of Lucas. The website is www.ridingforlucas.org and Ben is planning to put together a video with some recent photos of Lucas. God Bless!
Sunday, March 11:
For the last few days, Lucas has been urinating more mls than he's taking in from his feedings and flushes. Every BM and pee must be weighed and recorded. The Adema in his legs is a bit better, but there is still fluid present. He slept through the night last night and has been more alert. The seizures have gone back to his normal amount per day. We had him up yesterday for 2 hours and will be taking him outside today for a walk. We anticipate taking him to school Monday. We've been with him since he's been home practically all the time. The steroids seemed to be what he was missing the last 4 weeks and they somehow fix everything that was wrong with Lucas. God Bless!
Friday, March 9:
We brought Lucas home this afternoon from Philly. He's on high doses of steroids and will be for some time. His sodium went up to 136, acceptable, but other levels are off and running high blood pressures. He's been urinating much better and his skin is getting better from the steroids. It's been agreed to change nothing right now and let the blood pressures be what they are. Lucas's laughing episodes with nothing on TV were seizures, but the last 24 hours, he's back to moaning and resting in bed. God Bless!
Wed, March 7:
Lucas is still at CHOP. They don't know what has caused all of this, probably coming off the steroids. Many docs weighing in with opinions. On Tues, he went back on high doses of steroids and as of this morning, aside from his GVHD/skin really bad, his sodium as increased and he's been urinating. They put a Foley Catheter in Sunday and it's been working for him. We're not gonna fool around anymore and just keep him on the steroids no matter what damage they do at this point. He needs to be comfortable and we've obviously weighed the pros and cons of everything, but we feel to keep everything else working in his system, we'll have to concede the damage to his bones getting worst and go from there. He's had episodes of laughing at nothing, without the TV on, so we don't know where that is coming from the last few days. Hopefully looking at the weekend to come home if his sodium improves and he can urinate after the foley is taken out. God Bless!
Sunday March 4:
Lucas and Mom are still at CHOP. Followup scans and labs are showing that Lucas's feedings are going into his stomach through his Gtube, but the kidney is not transferring it over to the bladder. He's not urinating enough and the Lasix is helping somewhat, but the concern right now is that no matter how much the labs don't point to Renal issues, the actual Renal function does say something isn't doing its job. They catheter Lucas and nothing comes out. We're trying to explain something that the Docs are theorizing over. Right now, Lucas will be staying in hospital and other issues have arisen that aren't like Lucas. We keep commercials on when we want him to pee or poop and where he would exhibit frustrations and moaning episodes, he's been laughing histerically for no reason. Something is changing in Lucas both physically and mentally and as the case normally is for Lucas, the trend is to attribute it to disease progression. God Bless!
Update on Lucas March 3 at CHOP:
Lucas' labs from Wednesday hadn't changed and his sodium was still way down and his legs were filled up. We learned to measure Adema by pressing on the skin and counting until it bounces back. Lucas was at a 2 and it should be 0. Dr. Magnussen, not thrilled with his labs, called early Friday and wanted Lucas admitted to CHOP through the ER. The nurse got an IV in 1st try and he was tranported to General Peds on the 5th floor. We had nice docs in the ER and one of the docs was especially very understanding and found Lucas very complex in that nothing fits the norm with him and she had some very encouraging comments for us. It feels good once in a while to have someone see the big picture with Lucas and what it has taken to care for him these past 10 years. At this time, the thinking is that several things were changed the last few weeks but that it may be disease progression or that Lucas had a terrible reaction to the new blood pressure med he was on for a few days. Everything is saying it isn't his kidneys and thankfully we ruled out blood clots in his legs. Dr. Magnussen said the norm may be having to catheterize him each day and risk infection. Lucas has been having more seizures and he's very tired. The extra weight on him doesn't help. His skin is very dry and flaky with GVHD rashes all over again. Oncology weighing in and hoping to get Dermatology involved to see what could be happening and do we go back to steroids. It may be that after 2 visits to the hospital, we won't know what has happened and he may come home Sunday. God Bless!
UPDATE Tuesday 2/28:
We brought Lucas home Monday afternoon. They continued giving him Lasix till we left (we came home with some lasix to administer for today only), but he's still retaining water and his legs are very bloated. He has urinated a few times, but it should be more while on Lasix. Today was spent trying to buy different sized Catheters. The nurse tried 2 times just before we took him home and was able to get something from Lucas, but it wasn't easy. Thinking now is that neurologically, Lucas may not be able to get the signals to urinate and catheterizing will become a daily routine. We try to avoid this procedure and do everything possible to get him to pee somehow, in order to avoid catheterizing him which comes with infection risks. Also, his skin is looking very red, even after a wash down tonight and we have a call to CHOP Oncology to inform them of the last week and half. God Bless!
UPDATE Sunday 2/26:
On Friday Lucas was filling up with fluid and his legs were very heavy. Our nurse came and could not catheterize Lucas. It just wouldn't go in far enough. Called CHOP and advised us to get him to the ER at Monmouth MC. His labs showed potassium and sodium were bad. Especially the sodium which the week before at CHOP he sat at 36 and you must be at 35, but Friday he was at 27. He at least started urinating some, but not enough. Took him to PICU and started an IV and giving him Lasix to hopefully move the water out, but he's only urinating the same MLs he does on a normal day. It's just not getting anymore out. If they give him too much Lasix, that will cause to many other problems that Lucas had experienced before. Saturday, he and Mom endured crying babies all night. Right now, only a teenager is with Lucas and it's not as loud. Don't know where things will go from. Dad and Abby did their annual polar bear plunge Saturday at Seaside Heights and coming out of the water Dad's ankle got caught and he fell down. He didn't initially feel much pain as it was frozen from the water. They made it to PICU and when Dad leaned over to kiss Lucas, his ankle gave out. He couldn't walk on it. The nurses took him downstairs to the ER and Xrays unfortunately showed it wasn't broken, but instead had torn ligaments and arthritis. Broken bones heal faster, but right now he's on crutches if and when Lucas gets better and comes home, logistics will be a challenge. The wear and tear of taking care of Lucas and how we have to move him and position have taken their toll. God Bless!
UPDATE 2/23:
The last few days have been very hard on Lucas. As of today, he is off Prednisone (steroids), but he is starting a Hydrocortisone steroid therapy. Right now his Adrenal Gland is not working and it needs a jump start. With high blood pressure and the fact that he's been taken off Prednisone, he's probably now feeling more aches and pains in his body and it's become extremely difficult to move him in bed. His breathing is very unstable. His sleeping is very erratic and he's very tired and during the day he just falls asleep. In the past, we may have taken him to PICU, but at this point of the game, we're keeping him home. We're a bit tired, but we know the days will be long and frustrating, but we just want him feeling better and in less pain. God Bless!
UPDATE 2/21:
We never took Lucas for blood work Friday as he had a pee early Friday and we felt if he was in renal failure he wouldn't have gone, so we canceled the lab work.
We took Lucas to Monmouth Medical for his 4 week Pentamadine IV. Dr. Goroza from PICU came right down as the nurse wanted his input on accessing the IV. Last time was 9 sticks, but this time only 6 and it was accessed on his elbow. It's extremely hard for them to find a vein. They're small, they move and they collapse and bruise very easily. The IV made Lucas feel much sicker than previous times and it was not a pleasant day for him. Last night he didn't fall asleep until 3 a.m. and we think having him down to 2.5 mgs of prednisone/steroids is causing him to be out of sorts. We gave him valium, but it didn't do anything. His whole day is now mixed up and on Saturday he slept to 10:30 a.m. and some days he can hardly keep his eyes open, but he tolerated being in his chair for a little today and right now his breathing is very erratic and just keeping a very close eye on him. We've given him some saline treatments with his nebulizer and just hoping he can settle down and rest. Dr. DeGroote at MMC examined Lucas today and just finds Lucas such a difficult patient to read. He suggests that at this point with Lucas, Mom and Dad know him best and our gut instincts with administering his meds and what works for him is probably the best thing for him right now. Our goal right now is to stay the course with tapering the steroids and to get a cortisol level with in a few weeks. This may tell us if his body is doing anything to generate his own steroids. We hope the days ahead are better for Lucas. God Bless!
UPDATE ON LUCAS!
We started Lucas on a new blood pressure medication and not sure if a coincidence, but he's had trouble breathing and urinating the last 24 hours. We have been trying to get him to go and he's very distended. He's not sleeping through the night and has been out of sorts. CHOP wants us to take him Friday for blood work to rule renal failure and try to figure out from there. Rolling him has been very tough and we know something is going on. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas got approval for the additional weekly dose of Enbrel. After 3 weeks of the increased doses, we've seen his face and eyelids clearing up, but he's been developing GVHD patches on his torso and legs. We took him to CHOP Oncology on Tuesday and they liked the way his skin looked and didn't say much about the patches, but they wanted us to continue tapering his steroids down to 2.5 mgs twice a day. This is the lowest it has been in 9 years. Next week we have to cut out the nighttime dose of 2.5 mgs. We're concerned because this is all new territory for Lucas and it's unknown what reaction he may have, if any, to this lower dose and we hope the Enbrel will be all he needs to keep the GVHD away and maintain his skin. The appointment took 10 minutes, but Lucas was in his chair for about 6 hours and 1 hour on the examining table. He came home very tired and restless and his heart rate wouldn't go under 140, so we gave him some valium and it slowly came back down and he was resting better. He did have a very restless night and was up a few times. It's becoming too long a day for him physically, especially being in the van for over 3.5 hours and we don't know how much longer he can deal with these visits. He had extensive bloodwork done and Endocrinololy wanted some bloodwork done to see if he should remain on Vitamin K and other tests, but the lab tech could only get so much blood from him. 9 vials was all they could get. A new Oncology doctor saw Lucas and he had seen Lucas once while he was an inpatient, but the nurse practitioner filled him in on some of Lucas's problems that have become his baseline. For us they would be critical issues to deal with, for Lucas it's just another problem he lives with.
Back on January 25th at Monmouth MC, they could not get an IV in him for his Pentamadine and for the 2nd consecutive time the nurse had to call in the PICU doctor to do it. However, it took him over 7 tries until finally he caught a vein on his right foot above his toe. At that time, Lucas had severe Edema on lower back and both legs. After they tried to put in the needle on his legs, the Edema started seeping and coming out. It took about 15 minutes to stop each spot. At that time, we called Nephrology at CHOP and asked if we could stop giving him Norvasc for his blood pressure and they agreed to just keep him on the Lisinipril. One of the side of effects of Norvasc is that it causes the Edema and since Lucas doesn't move, this build up occurs very fast for him. For right now, we've just dropped the Norvasc and added nothing else. The last few days he's had blood pressures in the range of 140/100 and we'll see how they remain through the weekend. At CHOP the other day, we mentioned how difficult it has been lately to not only get an IV in him, but to just draw blood. It seems like Lucas is running out of veins, but we cannot go back to the Bactrim as that was the only option through his G-Tube, but it causes very severe diarrhea and Lucas was allergic to it. They mentioned Dapsone, but he was on that years ago and our local Dermatologist found that Lucas was allergic to that too.
Lucas gets to school each day and he's been especially enjoying Speech Therapy. When we pick him up he's normally more vocal those days with making different sounds. School has been Lucas's only salvation these days for getting him out of the house. He's had a very good year at school. We are more careful than ever with avoiding having him in public due to his compromised immune system and it's just safer to stay home. With the warmer weather coming soon, we can take him outdoors and set up his DVD player. We have a few quiet places away from home to take him where there aren't any people. Lately, Abby has been very busy with high school dance and her regular dance school practice. Logistics are very difficult in getting her places, but we do manage and always try to stay local for helping the nurse or when there is no nurse, to help each other when Lucas must be changed. God Bless!
Friday, January 20, 2012 7:49 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
It's a been a month since last update. The main issue right now is that we've continued giving Lucas his Enbrel injection each week and tapering down his steroids. This past week we reached the lowest dosage in a few years, however, he started developing GVH patches and his eyelids started getting dry and flaky. We applied creams, etc. but his eyelids just dried up and started to get flaky in a short time. We called Oncology and they wanted us to go back to the prior dosage of steroids and to start giving Lucas the Enbrel twice a week (double the dose). Lucas has some room to go up with the Enbrel dosage and only thinking right now is to raise the Enbrel and see what happens over the next few weeks. We're trying to get approval to increase the Enbrel dosage and we hope that's done by Monday and we can order more injections. It's coming down to the fact that we're hoping the Enbrel injections at the right dosage will work and we can begin lowering the steroids again. If the increased dosage doesn't work, we're back to increasing the steroids and he'll probably never get off them and he'll most likely experience more and more bone fractures. He's been scratching his eyes and nose more the last few days, but his spirits have overall been good and he's been getting to school each day. He did have diarrhea for a few days and we attributed that to the lower level of steroids. His blood pressures have been good lately, but we're not going to change any medications there for a while.
When we take Lucas outside to and from school, for that 2 minutes he's exposed to the cold, he starts to cough and have trouble breathing. We make sure the van is warmed up for him with the TV running. He's tolerated the cold in prior years, but this year he's struggling with it. His lungs are already very bad and all we can do is move him fast from house to car to cut down the exposure to outside. We go back to Oncology in a few weeks and we'll see if there's been any change with his skin. God Bless!
Sunday, December 13, 2011 8:55 PM CST
DECEMBER UPDATE FOR LUCAS!
Since last month, we've been giving Lucas his weekly Enbrel injection and it's been going fine. We went to CHOP last week and they felt his skin was looking good and to continue lowering his steroids and as of today we sit at 7.5 mgs twice a day. With his skin looking good right now, we're hoping the Enbrel is working, but the real test will be when we can get his steroids down to anything lower than 5 mgs twice a day. This is the point when his skin would flare up and we'd have to give him a pulse dose of steroids of 30 mgs a day. The goal is to get him off steroids completely and maybe then start eliminating some other meds and hopefully to start seeing his bone density improve. It still takes 2 of us to change and move him very delicately. When we come down on the steroids, as usual he gets grumpier, doesn't sleep and he has more spasms. We also went up to 120 mgs. of Balcofen a day to help with the stiffness and spasms that Lucas had a few weeks ago and we've stayed there. We continue to go to Monmouth for his monthly Pentamadine. He continues to go to school each day and we're able to get him up on the weekends for about 2 hours. It was 9 years ago this month, that Lucas was in Minnesota for his cord blood transplant and he is still on steroids.
On a positive note, our new insurance broker was able to get in to locate the problem with our insurance. He found that we weren't getting what we were paying for. It was an internal insurance mistake which had doubled all of our already very high deductibles and the process is now being resolved. Amgen is still working with us in covering the Enbrel injections and hopefully will continue too. Our last day of nursing was last week and it will start again on January 1 when we get another 60 days for 2012. We've contacted Lucas's DDD case worker and they sent some paperwork to apply for 10 hours of nursing a month, but we can't use our current nursing agency. For that little, it doesn't seem worth it to have someone come in and train them. It's taken weeks for some of our nurses to get use to Lucas, especially with moving him. We know many of you who check in on Lucas are baffled why we're now limited to only 60 days, but that's the way it is. Overall, we feel our insurance has been good to us and you just have to live with the changes and adjust. We've been at this for so many years and it's become a routine to simply deal with the problems of the day and get to next day. However, we are reaching out and getting help from family and friends to deal the logistics of Lucas and Abby.
Abby has been very busy with RBR dance and dance school Troupe. She has her high school Winter show this week and she's been doing well in school. We also want to thank Gethsemane Lutheran Church once again for holding the spaghetti dinner for Lucas and their generous help. Also, we'd like to thank everyone recently and this year who have helped support us through difficult times. WE ARE TRULY GRATEFUL FOR EVERYONE THINKING OF LUCAS! Also, we ask that you pray for those who are dealing with difficult health issues and other circumstances as we know first hand, it is extremely helpful when people are thinking of you and keeping you in their prayers. God Bless and have a Happy Holiday Season!
UPDATE FOR LUCAS!
A few days after our visit to CHOP, Lucas's skin and face were getting worse and we were told that the Enbrel needs about 4-5 doses to see any benefits, but we couldn't wait. Oncology told us to triple his steroid dose and closely monitor Lucas. Lucas was scratching his nose and eyes as they were terribly flaky and the skin under his eyes was very hard. Lucas was getting up and into his chair OK since last update until last Monday when he started yelling in pain while getting him off to school and right back to bed he went. Rolling him was difficult with him gasping, but he's tolerating being moved for changing a little better today. He hasn't been out of bed in 7 days and
we're going to see how he manages on Monday. Lucas has been enjoying school and we really want him to get there each every day he can, but moving him has become very difficult and unpredictable as to how he'll do each time. We've been using tylenol and other meds as often as possible to comfort him and ease the pain. Some of the nights have been long and difficult with Lucas having a tough time sleeping and being comfortable.
Since last update, we've had some more problems with insurance and the Enbrel. Initially, Enbrel was denied coverage due to medical necessity. Mom called up Enbrel Support and she explained our insurance problems and they agreed to supply it for free for 6 months or until our insurance started picking up some of the cost. They could access our insurance and see the problem we were having. We were very grateful for their contribution and let them know how much it meant to us. This past week was a long and difficult one with trying to get answers with our insurance. Since Sept 1, we've heard someone at insurance say yes to something and someone say no. On Thurday, a family friend helped confirm something that no one could tell us these past 2 1/2 months. Mom heard the work aggregate family insurance from a customer rep and that was confirmed by our friend. She sent us the coverage that doctors have access to and since we have the highest deductibles available, it confirmed that a mistake was made somewhere. Our broker confirmed that he did not submit an aggregate policy application as only healthy people would do that. The insurance was saying that Lucas had to meet the family deductible which is the maximum for 2 people and not just his own maximum in and out of network deductibles. Very confusing, but we are in the process of resolving that issue this week. The same problem occurred with the switching of Lucas's deductibles from the old policy to the new. We're still with the same company, and Mom had heard weeks ago that Lucas's deductibles go back to 0 and nothing carries forward to Sept 1. That was wrong and a kind customer rep was able to switch the old deductibles over to the new policy. It's been very frustrating as some of these people talk to you in a tone that is condescending and very rude. Others are helpful and considerate of your situation. Nothing worse than someone trying to make you feel like you're responsible for insurance premiums being so high with all your bills. But, that's the system and you have to battle with it or they'll walk all over you. Just because our family had been fortunate to get help with our medical bills, doesn't mean were going be taken advantage of and over pay bills we're not responsible for. All these headaches haven't distracted us from taking care of Lucas around the clock, in fact he's given us the fortitude to stand up to these situations. We hope everyone has a Happy Thanksgiving! God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
After about 14 days, we finally got Lucas out of bed and in his chair. He's been going to school the last two weeks, but he's only out of bed once a day. He's been having a tough time the last few weeks with his skin and breathing at times. We've kept his steroids the same, but his GVHD has flared up a lot. His face is very flaky and he has patches all over the place. After weeks of discussion with Dermatology, Oncology and ourselves, it was decided to start Lucas on a new medication, but he had to have blood work done to test his cholesterol and triglycerides as this medicine will increase those levels. His cholesterol came back 290 and triglycerides came in at 703, extremely high. We went back to have more blood work done to double check and the results were even slightly higher. Dermatology advised against Lucas having that medication and explained that they feel it's better if all decisions for Lucas skin be finalized by Oncology and Dr. Bunin. On Tuesday we went back to CHOP to visit with Anne and Dr. Bunin. They could see how bad his skin was, even though they were correct that it has been worse, it's still 9 years of steroids and dealing with this same issue. We thought out some ideas and it was decided to give Lucas another medication called Enbrel. It's a once a week injection that we have to give him and a nurse came in to show us and give Lucas his first dose. They said they normally only give this medication in hospital, but felt we could handle it at home. The main side effect is that it adds to Lucas's risk of infection, but we have to try something now. Giving him a pulse dose of steroids, as we have done in the past is not an option right now. Dr. Bunin said that overall, Lucas simply got a bad cord blood for his transplant and after all the creams, chemo treatments, etc., he's still got this stubborn GVHD. We've estimated that it will cost about $1,000 a month, but we all decided to see how he does with this medicine and we have to go back in 4 weeks for a followup.
It's becoming routine for Lucas now to need 2 of us to change him and get him in his wheelchair. Most of the day he's not very comfortable and the last several days he's experienced some bad spasms. Mom met with Dr. Barabas, Neurology, today at Lucas's school. He told us that we can give him Valium more frequently as needed to combat the spasms. A few years ago the Valium didn't seem to help much, but it's been calming him down these days. Lucas has a BM 100�f the time we have him out of bed and it's a battle to keep his bottom smooth and less irritating. When he's home we check him constantly. He's been up off and on most nights as he's been pulling his oxygen cannulas out of his nose which then triggers the pulsox to go off because his O2 levels drop. This can happen 3-4-5 times in an hour.
We've gotten some extremely smart people on board to help with Lucas's GVHD, but they can see that we've tried everything in their arsenal. We told them that since steroids lower his immune system, it's worth a shot trying something other than higher doses of steroids and that's where we are right now. Lucas is generally not comfortable most of the day and there's not much we can do. He does scratch his nose and eyes a lot with his right hand and we can see that he's in a lot of discomfort. Lucas cannot move his left arm due to the contracture. With all that he deals with each day, he's been having some good moments at school. Last Friday they had an acting class and he was yelling out the whole time. They didn't know that Lucas was in a few plays before he got sick and when we picked him up, he had a big smile. This Saturday evening, Gethsemane Lutheran Church, Lucas's old preschool in Keyport, NJ is holding a spaghetti benefit for Lucas and our family. We will do our best to get Lucas there as he's been smiling about the fact that he's going back to visit him timeout room. We truly appreciate their support for our family and truly are very fortunate for all the help we've received for Lucas and Samantha. It's helping making the decision to try this new medicine much easier even if it's covered or not.
Abby has been doing well in high school and dance. She's finding her way again while dealing with tough circumstances at home. We can only do the best we can. God Bless!
Wednesday, October 12, 2011 9:10 PM CDT
New Update on Lucas!
After giving Lucas the new medicine, he started to get very distended and restless. It did more bad than good. He was in more pain. We tried catheterizing him late at night, but we couldn't get it in far enough as the pressure and tightness in his abdomen area made it difficult. We tried running the shower for him to hear and putting his hand in warm water but nothing worked. On Friday morning he finally urinated and had a BM. He was restless during the nights and rolling him to change with giving him maximum oxygen was terrible. After we stopped giving the med on Friday, by Saturday afternoon he was moving a little better with slight gasping. He has not been out of bed in 11 days, but he still has little gasps when being changed when the oxygen is on high. His skin has flared up a lot since we dropped the steroids and Dermatology has us trying another cream while keeping his steroids down. Mom will spend 1 hour each night applying ointments and creams to Lucas's face and body. Parts of his face are weeping. A few patches on his body are bad, but we were told to give this new cream some time. For some reason, the last few nights Lucas has been up several times moaning and grunting loudly. It's been tiring more than ever right now, but we hope as each day goes by, moving him will get better and he'll rest better at night. On occasion he has loud gasps and we can only watch him closely. We're very hesitant to bring him to the hospital right now and have been managing through some difficult days to keep him comfortable and at home.
On Saturday, our town of Little Silver held a One Pitch Tournament and the gang did a fabulous job and the day was beautiful. Doug, Pete and all the volunteers who collected 50/50s and cooked did a great job. Players from our town, Rumson, Shrewsbury, Oceanport and West Long Branch participated and were very generous. The opening ceremony was terrific with Abby throwing out the first pitch to Mayor Neff, Ellie Swartz sang the National Anthem and Jeff Carrano sang Take me out to Ballgame and Dad thanked everyone for helping Lucas and always being there for our family. We received a gift from the NJ State Troopers Foundation and the event was held to help us with Lucas's medications and supply expenses at the pharmacy. Mom was able to attend for a little as the nurse then called to let her know Lucas needed to be changed. It takes 2 people to change him now at all times.
The other day, we were talking about Saturday and all the support we've received these past 10 years for Lucas and Samanthas health problems and we thought of how we see our family, friends and community with what they've done for us: Lucas's life each day is like being in a football game and the other team is winning 21-0 with 3 minutes to play in a driving rain. It's easy for everyone to say it's over and to leave for the parking lot and go home. But instead, everyone gets together and do all they can to rally our team from such incredible odds and WILL our team to NOT GIVE UP and we respond by playing as hard as we can to the last second, win or lose. The true courage throughout Lucas's life to us are all the People over these last 10 years who have stood up and sacrificed to help Lucas and our family cope with such difficult circumstances and hurdles and all the suffering he has endured. We know God has noticed and hope that he continues to bless Lucas, our family, friends and community and the other courageous children and families with MLD and other horrible illnesses. God Bless!
UPDATE ON LUCAS!
In moving Lucas on Sunday, he started gasping and yelling in pain. Just before that, he was laughing at a cartoon and may have breathed in too much. We have been cutting back on cartoons that get him too excited and have been trying to keep him calmer. We hate having to do that since his cartoons are his last thing to enjoy and many times we have to turn them off because he has difficulty breathing and catching his breath. But this time, he saw something that got him going too much. At least we think this is what triggered the problems. The next time we went to change him, the same thing. He's in a lot of discomfort and pain. We called on Monday to Dr. Magnussen, Dr. Zanni, anyone who could recommend giving Lucas something. We asked for something stronger than Tylenol/Motrin and Dr. Magnussen got back to us and called in a Med this afternoon. We did not want to bring Lucas to the ER and wanted to keep him home. The first dose hasn't done anything yet, but we're hoping after a few doses he'll settle. He's had numerous seizures with just one dose and we're in his room keeping a close eye on him. He's now trying to get to sleep. It's the worse he's been with moving in a long time, but we feel he's more comfortable at home and we'll keep him here until we have no choice. We cut back on the steroids after a visit to CHOP Oncology last week, but he's getting some flareups right now and we are applying our numerous creams to combat it. We are alternating his oxygen with the tanks and his concentrator. Problem with the concentrator is that it's OK at night, but during the day, it gets him jittery as it's hard to hear the TV over it. The tanks are quieter, but they run out often. God Bless!
It was 9 years ago today that we received the diagnosis from Dr. Barabas that Lucas had Metachromatic Leukodystrophy/MLD. It had taken us about 12 months to learn of his diagnosis and we heard many things during that time as to what Lucas was suffering from. After some followup blood work and urine samples confirmed the diagnosis, Dr. Barabas had us contact Dr. Krivit at the University of Minnesota. He had Lucas's blood work reviewed at Jefferson Medical University in Philly to confirm the previous diagnosis and then he had us come out to Minneapolis to see if Lucas was a candidate for a cord blood transplant, his only hope to survive. He felt the disease was progressing too fast and that Lucas didn't have much time left. He felt Lucas could benefit from the transplant and we went forward. Unfortunately, everything went down hill 2 months after the transplant and in late February, 2003, he told us to take Lucas home and enjoy what time he had left. Things did not look good back then for Lucas and although he's suffered these last 8 1/2 years, he's still here. He gets through a day with pain, struggling to breath, and just simply dealing with many other conditions. Some of his doctors comment on how he's still here with us with all that he copes with and we can only come up with his willpower and prayers and support from so many people that keeps him going.
Today at Monmouth Med Ctr., Lucas had his pentamadine IV and at the end he started to gasp and feel sick. We got him home and situated and he bounced back later in the afternoon. He was scheduled to have it on Tuesday, but we ran into problems with insurance. It was resolved Thursday and we took him in. We couldn't get blood work done today because no one could tell us if it was covered. It's not that we won't get it done, but that since this new insurance kicked in, we need to know in advance where, what and whom to have things done for Lucas. It's been a long 4 weeks and every day we're on the phone with a provider, our case manager, etc. For now, nursing is limited and we're adjusting to that, but it's just been a rough battle with everything else. When you're in our position with the type of insurance we are able to afford and have, you start to learn fast about the barriers that are put in front of you and the things that are no longer covered. We simply have to deal with it and make sure Lucas receives the best care each minute of the day.
In our last posting, we mentioned that Abby was doing very well at Red Bank Regional and she really enjoys it. She turned 14 on September 18. She's meeting new friends through dance, enjoys her teachers, and showing school spirit. That is helping us out tremendously that she's doing well and is happy. There has been a few days when picking Abby up from school that we've seen some of Lucas's old classmates and friends and it was hard knowing that Lucas should be there and driving home from school on his own. Some of his old friends have come over and said hello to Dad at the RBR parking lot and we really appreciated that they remembered Lucas and our family. Dad has jumped back into coaching soccer with a nudge from Mom. He never thought he could coach again as the memories of Lucas on the soccer field had made it hard to take but he's back with 3/4th grade boys rec soccer in town and enjoying it. Lucas has made it to school each day and is doing well in his new class. He stays a bit longer most days and it does tire him out, but he's hanging in there as best as he can.
On a final note, we were informed the other day that our Men's 40 and over softball league in town is holding there annual one-pitch softball tournament on October 8 and they've selected our family this year to receive what they raise. Each year about 10 softball teams from town and neighboring communities participate in an all day event to help families coping with catastrophic situations and we were chosen this year. We're very grateful and honored that Doug Glassmacher and Pete Roskowinski asked us and we appreciate everything that everyone has done to help our family through these challenging times. God Bless!
Tuesday, September 13, 2011 5:25 PM CDT
Tuesday afternoon update from this mornings: Our nurse case manager informed us that Lucas does have 60 days nursing starting Sept 1, but they must be used consecutively excluding hospital visits, nurse cancellations, etc. That will help us until about mid November. On January 1, we start with another 60 days for 2012 and expect them to last until mid March and then we're on our own. It's better than nothing, but the hope is that things change for nursing once Lucas turns 18 this coming May. God Bless!
We updated last time and had indicated we were forced to switch insurance policies and that our nursing at first had changed, but we later found it was fine. Unfortunately, these past 11-12 days we found other areas of concern with the new Direct Access policy and had looked into an HMO. We were told that the nursing is not unlimited and that we only get 60 days a year. Numerous calls to the nursing agency and Horizon and our nursing and case managers showed how confusing the process is. We received different answers from the customer service from no change, no nursing, to 60 days and to nothing for the next 4 months. Since we couldn't get an answer, we stopped nursing last Friday as if we're not covered and do nothing for several weeks, we could be stuck with an extremely large bill. We told our nursing agency that until we get a definite answer in writing, we need to stop the nursing. A lot of leg work to see what our coverage was for medical equipment, rentals, feedings and medical supplies. Eventually we determined for a 2nd time that all of Lucas's providers were in network and how much out of pocket his equipment, feeds, etc. would be. It simply came down to the nursing issue and we know for sure that as of 1/1/12 he gets 60 days, but right now, according to our insurance nursing case manager, she's getting several answers too from her own company. We know many of you who found out about the reduction in nursing care questioned how that could happen, but unfortunately, that's the new coverage and nothing more we can do. Our broker looked into other companies, but they were all about the same and to switch and get approvals for the things that have taken us several years to finalize would a be frustrating. We're staying with the new policy and working out logistics with Abby and taking care of Lucas. As with everything else that changes, we'll adjust to what has to be with Lucas and go on.
Lucas has started school again and has a new class and teacher. He's doing Ok the last several days. Abby started high school at Red Bank Regional and is in the dance academy. She's enjoying school and has adjusted very well and continues to do dance outside of school. Fortunately, she starts school at 7:30 and it's 2 minutes from home. We are figuring out logistics with Lucas getting to/from school, getting Abby home from school and to her dance school. Mom had her followup MRI and visit with Dr. McCormick last Thursday and it went well. No new tumors, but the damage from the last tumor to her spinal cord and the nerves are still there and as she has done the last 2 years, she's learned to live with it. He was extremely surprised to see how well she has done since the surgery and explained that in many cases, people struggle to get on with their lives. Taking care of Lucas helps you move on with many problems we encounter. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
The last 3 weeks have been hectic and stressful. First, last week with all the news of the approaching hurricane, we were torn between staying put or leaving town. Then the house shook and the nurse saw Lucas's bed rattling. We looked outside, went to the basement and couldn't find anything. Then we learned it was an earthquake, but never got concerned about it. When Friday came, family from PA and West Jersey were calling and concerned. Our niece Stephanie and nephew Billy offered to have us stay with them in Phillipsburg. He's a police officer and had access to getting us supplies, etc. if needed, plus the hospital was 2 minutes away. We decided to leave Friday night as at that time, we weren't concerned about flooding as we're pretty high and away from waterways here on the coast, but concerned with windows, falling trees and mainly if we had to get Lucas to a hospital, the location of the local hospitals in flood areas would make it impossible. The town alert system advised those with compromised health issues to consider leaving town as emergency services could be strained. We spent Friday to Sunday afternoon there and left after learning Route 287 was finally opened in the afternoon. The winds were at their strongest late afternoon and we went over the Garden State Parkway Driscoll Bridge with winds probably around 75 mph and the van was all over the road. Not many cars on the road and we saw severe flooding on the way. Our home was fine and no problems. It's never easy not being home with Lucas as we had to pack so much equipment. Lucas and Abby did fine at their cousins and we want to thank our neighbors and friends for keeping an eye on the house while we were gone. Many roads and many power outages in our area, but some friends in North Jersey had flooded basements and lost their cars. Our thoughts and prayers are with everyone coping right now. It's been a terrible tragedy and it was very stressful deciding what was best for Lucas, but we know we did the right thing. In 8 months we have had an earthquake, hurricane and a 34 inch blizzard. We've had 20 inches plus of rain this month. Hopefully this winter will only have 3 inches of snow.
August has been a hectic month as our insurance is set to change Sept 1. We were forced to switch to a new policy and it was difficult figuring out what we'd be covered for and if approximately 17 health care providers used by Lucas were in network. We had a little scare with nursing today, as the agency was informed that our plan did not cover private duty nursing, but fortunately they got to the right department and they informed us that they are covered and nothing has drastically changed with our policy except increased co-payments. For Lucas, that's a big item, but at least our coverage is still intact. All of us had appointments this month with Mom getting a followup MRI as requested by Dr. McCormick her neurosurgeon in NY. We see him next Thursday to go over the results. Lucas's G-tube site was infected and we had to get him to Dr. Teitlebaum, his gastro doc, and we were able to get it better without antibiotics. Lucas had his first appointment at CHOP with Dermatology and Dr. Treat. Dr. Treat felt that what we have been treating for GVHD may be psoriasis. A biopsy was done in Oncology 4 years earlier and Dr. Treat thought he could access those results and review them. Unfortunately, he couldn't and we had to drive back to CHOP last week for him to take a biopsy of Lucas's scalp and belly. Both trips to CHOP were in pouring rain, but they were very nice to Lucas and we didn't have to wait 1 minute for the appointment. Dr. Treat called Mom today to inform her that the biopsies, which were tested at the Univ. of Penn, showed it is psoriasis. Dr. Treat called Oncology and discussed the results, but they are holding firm that it is GVHD because Lucas had a Cord Blood Transplant. Dr. Treat said it is difficult with Lucas because he deals with so many doctors, but he feels they all have to chime in on a plan of treatment for Lucas. He has a treatment plan set up for Lucas which could begin tapering off the steroids, but he must have the input of all the disciplines he deals with first. If oncology doesn't go along with his diagnosis, we don't know right now what we'll do.
Overall, we change and move Lucas each time with oxygen. His skin isn't looking too bad right now due to all the different creams prescribed by Dr. Treat and his vitals have been holding steady the last few weeks. It takes about 45 minutes to apply all the creams. We only get him up once a day and Lucas made it to school most of the summer. He restarts school Sept 6. Abby starts high school Sept 6 too and is very excited to start. God Bless!
Sunday, July 31, 2011 7:50 PM CDT
UPDATE, SUNDAY, 7/31: (LUCAS AND ABBY PICTURED ABOVE WITH JOHN MCGINLEY BACK ON JUNE 29)
Shortly after the last update, Lucas started having problems with being moved and changed. He was de-sating and his heart rate shot way up. A few times he de-sated to 86-87 and his heart shot up to 150-160. For about a week in mid July, when we changed him, he would continue to have 1 or 2 more BM's and urinate during the move. He was in a lot of discomfort and gasping during the changes. Our nurses found changing him to be very tense and it took 2 of us to change him. The faster the better. Since early July until today, we change him or move him each time with oxygen and sometimes we'll increase the rate he's receiving. We know his lungs aren't good, but to what degree are any more fractures playing a role is the unknown. We contacted Dr. Magnusson a few times and gave him Lucas's vitals and symptoms. Lucas was feeling very distended and we put out the idea of something up with his gallbladder. Lucas had his Pentamadine IV last week at Monmouth with blood work and Dr. DeGroot checked him out. He wasn't so sure about the gallbladder, but rather leaning towards Lucas having many micro-fractures that keep recurring and for him it takes much longer to heal. Some of his blood work levels were high, especially his ALP and GGT, so he called Dr. Magnusson and they agreed that Lucas get an ultrasound locally rather than at CHOP. The tech seemed to react when the scan was reviewing his gallbladder, but she did comment that it appeared to be contracted, but after a discussion with Dr. Magnusson he felt that was not an issue to address. It left us at the same point we have reached many times with Lucas, "What's causing him so much pain?" The last few days, he was moving fine with oxygen and unlike a few days ago, his rate stayed around 99/100 instead of going down.
We had Lucas at school the last 2 days of the week and through all his breathing bouts and the extreme heat, he's managed to get to school most of the time. He's in a new class for the summer and he's doing fine. It appears that only getting Lucas out of bed once a day is all he can manage. During the very hot days when we couldn't get him up, his room would get stuffy and warm and it doesn't help to have his TV on 15 hours straight along with his bed and the oxygen concentrator when we change him. We started turning off the lights and TV and putting his DVD player on a table for him to watch. This cut down on the heat. During the peak of the heat over 100 degrees, we lost power Friday at 7pm and it came back on Saturday at 10am, but fortunately the generator did it's job. The only thing with the generator this time of year is that the A/C needs a lot of juice to start up and since it was running around the clock, we kept all the lights off and didn't use the stove or TVs. Basically just Lucas's room, A/C and Refrigerator were running. Without the generator, we'd have to take Lucas to the hospital as he has several pieces of equipment needing power (his Hillrom bed, feeding pump, pulse-ox, oxygen concentrator, suction machine, the charging of the lift machine to get him out of bed and of course his TV).
We've sent the CD of Lucas's ultrasound to Dr. Magnusson and will hear back from him soon as he wants the radiologists at CHOP to read the scans. Lucas finally got called for a Dermatology appt. this past Friday, but we didn't feel he could manage the 2 hour ride each way plus being in his chair the whole time. We rescheduled for Aug 15. Dr. Magnusson wants their input about his GVHD. God Bless!
UPDATE, SATURDAY, 7/2:
On Wednesday of this week, a very special visitor came to our home to visit Lucas. Actor John C. McGinley (Scrubs, Are We Done Yet, Platoon, many others) stopped by to visit Lucas. Lucas loves his character in one of his favorite movies "Are We Done Yet." Our friend from town, Jon Bitman, is close friends with Mr. McGinley and about a month ago Dad had mentioned how much Lucas laughs when he watches the movie and his character Chuck Mitchell. Jon had mentioned that Mr. McGinley was coming to vacation down the shore and he called him. He sent Lucas a signed movie poster with a touching comment and wanted to stop by and visit him at our home. On Wednesday morning, Jon brought him by to see Lucas and it was a terrific visit for our family and Lucas. When Lucas saw Mr. McGinley, he appeared to have a look like I know this person and he couldn't believe he was alongside his bed talking to him. Later that night we played the movie for Lucas and he had a smile for the entire movie and was laughing at his favorite scenes and we think it seemed to sink in to him then what had happened in the morning. Lucas has had some very tough days the last 3 weeks and since Mr. McGinley came by to visit him, he's been up in his chair more, more alert and doing better. The visit was very uplifting for us and Lucas and we graciously thank Mr. Bitman and Mr. McGinley for bringing some happiness into Lucas's life. We'll never forget it.
As we said above, Lucas is doing better and we're back to one person changing him. He's had less BM's per day and we've been taking him for walks the last few days as the weather hasn't been too hot. Lucas had his regular Pentamadine IV at Monmouth last week and he did fine the rest of the day when we got him home. It's still very difficult to determine what really caused the gasping and shortness of breathe for him these past weeks, but we're thinking the antibiotics may have worked, although it caused him to have a dozen or so BM's a day. On Tuesday, July 5, Lucas starts summer school and we anticipate getting him there every day possible and hope the rest of the summer isn't too hot. God Bless!
UPDATE SUNDAY 6/26:
The BM's have come down to about 6 a day for Lucas, but he's very gassy and not comfortable. He's not fully de-sating while changing him now, but he still has little gasps as if he's trying to catch his breathe. He's moaning constantly and most of what we put on TV upsets him. He's not been very happy the last few days and we think that these antibiotics just destroy his stomach and cause him so much discomfort that we're hoping he'll rebound in a day or two. We did have him up and out for a ride in the van for an hour or so, but it was right back to bed as he had BM's. God Bless!
UPDATE THURSDAY 6/23:
Lucas finished his last round of Antibiotics today and they have not been good to his body. He's been having 10-12 bowel movements a day and has been in a great deal of discomfort the last few days. Today he started gasping again and de-sating. Not where we want to be after putting him through all this. He's not feeling good right now and we hope his body can bounce back tomorrow after having a day with no antibiotics. God Bless!
UPDATE FRIDAY 6/17:
Yesterday afternoon we called Dr. Magnussen to let him know its been about 7 days and Lucas still can't tolerate our rolling him to change him and he's still De-sating. It takes him about 2-3 minutes to get his breathe back once we roll him on his back. He told us to take Lucas locally to the ER at Monmouth Medical Center and not put him through a trip to Philly. We got Lucas there around 4 pm and he had two sets of chest X-rays and he was then taken to PICU at 8 pm. They are familiar with Lucas and they contacted Dr. Fisher who would stop in Friday morning. Dr. Goroza was the attending and knows Lucas and us very well. Dr. Sembreano from Pulmonary stopped in and has seen Lucas before. He got to see when we moved Lucas to change him that he had gasped for air and was de-sating. He said the X-rays didn't show any rib fractures, but they really don't give a good picture of Lucas because everything is smushed together in his chest cavity. He compared them to prior X-rays and Lucas's left lung did not look very good so he ordered Lucas be put on antibiotics immediately to treat him for pneumonia. With that said, they came in and did an Echo and the cardiologist felt the fluid had not increased around the heart and that nothing looked worse in that area. Dr. Goroza contacted Dr. Magnussen at CHOP and they concluded that the safe bet right now is to treat Lucas for pneumonia and that he could go home on antibiotics. We got home around 6 tonight and Lucas is resting comfortably in bed at this time. If he's still gasping on Monday, we have to contact Dr. Magnussen and go from there. Dr. Goroza understands Lucas's situation and we discussed the difficulty of trying to diagnose things for Lucas and we have to look at the big picture as to what we would do if we even knew something was broken. Not worth right now putting him through a Cat-Scan and to simply monitor him closely this weekend and see how he does.
On Wednesday, Abby had her 8th grade graduation at Markham School. We were hoping Lucas could hang in there through her dance recital and graduation and he did. Abby had a great evening and looked beautiful. She was one of two kids to have a perfect attendance this year. She has learned through watching how we care for Lucas to use some common sense in trying to avoid germs and be aware of her surroundings. We were so proud of her, not only for making the honor roll and doing well in school, but for how she has handled herself and coped all the years in school with her brothers illness. Many days having to stay with family and friends while Mom and Dad were away with Lucas in hospital or taking him to appointments. She's looking forward to high school and attending the Dance Academy. God Bless!
UPDATE ON LUCAS - WED, 6/15:
We've been able to stop giving Lucas oxygen around the clock a few days ago, but he's desating into the low 90s high 80s when changing him (even with oxygen). He's been in bed the last 7 days. Dr. Magnussen told us last Friday to monitor him closely and give it 4-5 days. He needs oxygen each time changing him and he still gasps and struggles to breathe. We're steering away from thinking there are any broken ribs as it sounds like possibly the fluid could be building around the heart again. (We reviewed the website from last March, 2010 and the symptoms are almost exact) We called Dr. Magnussen today and he recommended we contact Dr. Ewing in Cardiology. Waiting to hear back from him. Lucas's heart rate has been high and getting higher with certain cartoon episodes and we have to turn off the program if he gets too excited. Abby has her 8th grade graduation tonight and we're trying to hang in there with Lucas until tomorrow. We are hoping to stay local for any tests/xrays to avoid putting Lucas through the long ride to CHOP. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
On Wednesday of this week we took Lucas to the boardwalk at Pt. Pleasant with his class. It was hot, but not within a block of the boardwalk. He did fine and we spent about 1 hour there and went home. For some reason overnight, he was restless and up several times. When we went to change him Thursday morning, he started gasping and de-sated in to the high 80's. We put him on oxygen but took it off shortly after. His breathing still wasn't good and the next time trying to change him, it happened again more severely. He hasn't been up in his wheelchair since Wednesday around 1 p.m. We have been keeping him on oxygen all day long and giving him Motrin/Tylenol in case he broke something or pulled a muscle. We've also been giving him Valium and it's been calming him down and keeping his heart rate at a good level. We don't plan to take him to CHOP ER at this time, but are keeping a close eye on him. It takes 2 people to change him now and hoping that keeping him in bed and the extra pain meds will bring him out of this situation in the next few days. We can't stand not being able to get him up in his chair for any period of time during the day, but right now we have no choice. In the past, we have taken him to the hospital with these episodes, but feel we can manage him just as fine at home. Dr. Connor's (Podiatry) came over today to clip Lucas's toenails that were starting to cause him discomfort and he had to get in there and cut very close. It caused some bleeding, but Lucas hung in there as best as he could. Fortunately right now, the heat has gone away, but even with his oxygen concentrator running and throwing off heat, his room isn't too bad and we believe putting on the new roof last October and improving the ventilation up there is helping. He's still perspiring, but not as bad as last summer. We hope things get better soon for Lucas as Abby has her 8th grade graduation and dance recitals now and Lucas has a special day coming up later this month. God Bless!
Sunday, May 8, 2011 8:56 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
We want to start by first acknowledging all the riders, sponsors and people who made pledges for the "Riding with Lucas" benefit for our son. Ben Willemstyn is still working on everything as checks are still coming in and he and his wife Kim have done an incredible job for Lucas. The timing of the benefit couldn't have come at a better time with all the changes we have had to make the last few months with work. Thank you to everyone.
Since last update, Lucas has had several appointments and a few visits to Monmouth Med Ctr for his pentamadine IVs. Lucas had a recent visit to CHOP to see Dr. Magnussen, Dr. Copelovitch (Nephrology) and Dr. Ewing in Cardiology. Lucas had another Echo and it showed that the fluid around his heart has stayed the same at around 180 mls. Normal is 15-20 mls, but this is turning out to be Lucas's baseline. Nothing was added or changed from that appointment. With Dr. Copelovitch, he felt Lucas's blood pressures were in good shape and that it was time to take him off the Norvasc, but raise his Lisinpril. We showed him that Lucas's legs and ankles had edema and could be caused from Norvasc. Also Lucas had some swelling at the base of his spine. He wanted Dr. Magnussen's take on that call and he agreed to give it a chance and maybe we would start to see a difference with the swelling. Dr. Magnussen also examined Lucas and wants him to see Dermatology at CHOP. Lucas's eyelids get very dry and flaky and even though he feels that area may not be GVHD, the rest of body which is looking good right now definitely looks like GVHD. He wants Dermatology to give their input. Oncology has always told us that they make the call with the skin, but it doesn't hurt to get another set of eyes involved. 4 years ago when we took Lucas to NIH, their Dermatologists recommended he see someone at CHOP, but it never worked out that we did.
Lucas's IV's at Monmouth went well except for his normal not feeling so good the 5-6 hours after their finishing. He usually seems tired and just not feeling himself until the next day. Several days after taking Lucas off his Norvasc, his daily blood pressures started to get higher and higher and when we called Dr. Copelovitch, he told us he had a gut feeling that he'd be called back shortly with that news and he immediately put Lucas right back on his prior Norvasc dosage. It's been a long time since we've been able to take Lucas off any of his medications.
Overall, Lucas is going to school each day he doesn't have a hospital visit. He has good and bad days at school. Bad days are that he doesn't react to anything or anyone. He's having a difficult time tolerating being in his wheelchair and it's becoming more normal when he gets home from school for us to keep him in bed the rest of the day. We now only get him up on the weekends around 1 and back to bed around 2:30 or 3. He just can't handle being in his chair much anymore. We did take him to Red Lobster the other week and he really enjoyed that. The owner presented him with an official Red Lobster chef's coat with his name on it. They gave him a few pins and a salt and pepper set. They really go out of their way to make the experience special for Lucas and we appreciate it. With the warmer days coming and Lucas having to spend more time in bed, we're anticipating some tough days for him and will have to figure out how to keep him comfortable.
Abby has been doing fine at school and dance and she is really looking forward to Red Bank High School for the dance academy. She's been baking and cooking with Mom and has embarked on a special project that we're proud of her for.
On a final note, this coming Friday the 13th of May will mark Lucas's 17th birthday. We plan to celebrate on Saturday with family and words cannot begin to express how we feel about Lucas reaching this milestone in his life. Back in October, 2002 when we met Dr. Krivit at the University of Minnesota and discussed Lucas's options, we were left with 2 choices and it was his opinion to us to give the transplant a shot at extending Lucas's life in hopes that additional research would come up in the next 5/6 years to help him. The other option was to take him home and enjoy the next 12 months or so that he had left. Nobody can put an exact time frame on these things, but we had to give it a chance. We remember thinking if Lucas can make to 13-14, that would be some miracle even if no cure or additional treatment was developed. When Lucas had his transplant he was 8 and now he's turning 17. Lucas has suffered these last 9 years and the journey has been long and painful for him, but he's still got some cognitive abilities left. Through the numerous surgeries, hospital stays, sleepless nights and expenses of these 9 years, we feel the transplant was worth it. He's still battling numerous issues, but when we hear him moaning on the baby monitor each morning, we know he's made it through another night and that we better get in there on the double to get his cartoons on. God Bless!
Sunday, April 3, 2011 5:15 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
We must first start out by letting everyone know that yesterday's "Riding for Lucas" fundraiser was an outstanding success. The weather cooperated, except for the strong winds, but all the 52 mile road racers and the 25 mile mountain bikers made it back to Val's Tavern in Rumson. A lot of thank you's must go out, but the fundraiser was the idea of Ben and Kim Willemstyn from our town. Ben approached us back in November about the idea that he had. He and several other bike enthusiasts wanted to do something special for Lucas and our family, and they sure did. It was a lot of work over the last several months and anyone who hasn't seen the website that was set up by Ben can go to www.ridingforlucas.org. We're also graciously thankful to all the riders who participated and their kind and encouraging words to us after the event. Mom, Dad and Abby were there at the end and were able to thank everyone for their sacrifice and efforts. Lucas could not be there but we told him this was a special day for him and many dedicated people are out there riding for him. Also thank you to the business sponsors and Chris and Linda Smith of Val's Tavern in Rumson for putting on the post race celebration. Also, thank you to everyone who pledged funds for the event. We had a chance to talk to the riders and their families and it was very humbling. Some had said how tough the wind was that it was tiring, but they had Lucas in their thoughts and that got them to the end. We have been extremely fortunate over the last 9 years with the support for Lucas and Mom from our community and other organization. It's important that everyone knows that their efforts have taken tremendous burdens off our shoulders and allowed us to concentrate over caring for Lucas and being there for Abby. We've said several times before that we haven't been alone in taking care of Lucas all these years. Thank you once again to everyone!
Lucas has been holding his own the last few weeks. He's kind of gotten over the cold and congestion thanks to Mr. Feinberg's coming over several times to deep suction him. With out a doubt, if he didn't get the suctioning at home, he probably would have ended up with pneumonia again and been in hospital. Unfortunately, as we have lowered the steroids, his skin has gotten worse, especially his face and eye lids that irritate him. He's not been able to tolerate being in his chair 2 times a day. If we get him to school, when he comes home, we generally don't get him back up again as we had normally done in the past. Gradually, things just keep getting tougher for Lucas and he has to spend most of the day in bed. It's been a real battle keeping his skin on his bottom from getting to red and sore, but we must stay on top of it daily. Even taking him for a walk up the street is getting less and less. Abby had said the other day that when she's in his room, he doesn't acknowledge her like he used to and that's also the case with us. He'll laugh at his cartoons and still De-Sat into the high 80's if something is real funny, but that's all he seems to want. When something is too funny for him, we now have to put on something else and calm him down. He can't go into a deep hysterical laugh like he used too for fear he'll choke and aspirate. We've been getting him to school most of the days. He has his 4-weekly pentamadine IV on Tuesday at Monmouth and then back to CHOP for his Cardiac followup in a few weeks. God Bless!
Saturday, March 18, 2011 1:30 PM CST
Update for Lucas Saturday 3/18/11:
Thank you for checking in on Lucas! We took Lucas to CHOP to see Dr. Magnussen on Wednesday. First stop was to get a chest Xray before seeing Dr. Magnussen. He said that his lungs looked fine, however they detected Pneumatosis in the lining of his intestines. This is gas bubbles in the lining of his intestines and it could cause bowel obstruction. It is caused from prolonged use of steroids. Right now Lucas seems to not have any symptons from this. Dr. Magnussen examined him and recommended for his coughing and congestion to put him on Saline breathing treatments using his nebulizer. Hopefully this will thin the secretions and mucas. He said if he's not better by Monday to call him back. We have to contact Michael Feinberg to stop by this weekend to deep suction as his saturations have not been good. We've been giving him oxygen off and on during the day in addition his normal nighttime routine. He's been out of school all week and not in his chair very long. Somehow he managed to be in his chair several hours more than normal for the visit and the ride home was touch and go, but he hung in there. He's having around 6-7 BM's a day, more than normal. Keeping a close eye on him.
A reminder for the mountain bike/50 mile bike ride fundraiser for Lucas on April 2 and a big thank you from our family to everyone participating and sponsoring. Please visit: www.ridingforlucas.org. God Bless!
Update 3/15/11:
Lucas is coughing and struggling with the congestion. We've been up each night several times. We take him to CHOP Wednesday to see Dr. Magnusson and discuss where everything stands right now. Although it doesn't sound like anything is in his chest, he may order a chest Xray. Michael Feinberg came over Sunday and suctioned Lucas. Some more gunk came up, but he's back to coughing and retching. We'll see tomorrow if any suggestions.
The bike fundraiser for Lucas is on April 2. An amazing website has been set up by Ben Willemstyn. You can access it at: www.ridingforlucas.org. All the information about the event is given. We truly appreciate everyone's effort for working on the fundraiser and the support from all the sponsors.
God Bless!
UPDATE ON LUCAS!
Lucas has been struggling the last 5-6 days with breathing and coughing. We're keeping a close eye on him and we're constantly in his room all day and night. He's got severe congestion in the back of his throat, but it doesn't sound like it's in his lungs. He had his Pentamadine at Monmouth on Monday and the doctor didn't think he needed Chest Xrays. We had a family friend Michael Feinberg who is the Respitory Therapy manager at Kessler Institute stop by to deep suction Lucas on Wednesday. He also didn't think it was in his lungs. Lucas sounded better for several hours after that, but he's back to coughing and gagging. We're very concerned and hope it doesn't turn into pneumonia again. This is the same time of year that things have gone downhill for him as has happened the last 2 years. He's not feeling very well right now and the nights have been long for all of us. Just keeping a close eye on him right now and hopefully he can get through this without having to be admitted. He's been home from school the last few days as he can't tolerate being upright in his chair. He can't have chest PT, nor can he use anything like a vibrating vest that jars the chest into loosening up the congestion. Those most likely would cause more rib fractures and are not an option. Lucas just has to fight through it and we have to suction constantly. We may call Michael back tomorrow if he has another bad night.
We mentioned on a previous update that a Mountain Bike/50 mile Fundraiser is being organized by Ben Willemstyn from town and things are moving right along. The date is Saturday, April 2 and we will update shortly with location, time and a link to the website. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas had his pentamadine IV at Monmouth on Feb 7 and that's been about it. He's been going to school practically everyday since last update. He's been doing OK and nothing much has changed since last update. The snow has practically melted and just waiting for warmer weather to get Lucas out of the house more. We took Lucas to Red Lobster a few weeks ago and he had a terrific time. He sucked on a shrimp and a piece of lobster. The owner made Lucas "Grill Master of the Day" and gave him a personalized Red Lobster pin. They were very kind and caring to Lucas. It was the happiest we've seen him in ages. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has been hanging in there the last few weeks. He's not been that communicative with us or anyone lately. He's quieter and some of the humor and jokes that he reacted to months ago aren't working anymore. What works today to stimulate him, probably won't work tomorrow so we're constantly trying to figure him out and keep him content. Oxygen throughout the night is the routine now for him and we closely monitor all his vital signs throughout the day.
He had a long day at CHOP on Jan 6th where he had another Echo done in Cardiology and Dr. Ewing was happy to inform us that the fluid has come down to about 150 mls around the heart. 10-15 mls is normal, but for Lucas, he's come down from his last test and good news. He doesn't know why, maybe the pericardial window is still working or maybe the pulse dose of steroids has knocked it down, but any event it's lower. After Lucas's last pentamadine IV at Monmouth last month and Dr. Fisher examining him, Oncology at CHOP put him on a boost/pulse dose of steroids and it cleared up most of his skin and blotches and maybe helped lower the fluid. On to Endocrinology and Dr. Levine he went. A lot of information gathering and he examined Lucas. He said Lucas is very delayed with puberty and his bone density is obviously very dismal. He wants to start a plan of action by putting Lucas on testosterone and to start him on Forteo bone growth injections. We're currently waiting for approval for both treatments, but Dr. Levine is optimistic that since the calcium doses and Pamidrinate IV's did nothing for Lucas, he should be eligible for the Forteo injections and they'll fight if needed to get that for him.
After that productive visit, it was on to Oncology for his clinic visit and Ann and Dr. Brown weren't real happy with a few things. First, that week Lucas had been running fevers nearing 100.5 and that we gave him Tylenol to bring it down. We always new if he spiked a 101.5 fever, it was off to the ER, but they said we can't give him any Tylenol because we have to see how high the fever will go up. If it stays at 100.5 for 6 hours, it's off to the ER, so we were reminded of protocol for transplant recipients. The other was his skin as his eyelids were very dry and swollen, so they upped his steroids again to try and get it under control. The winter dryness doesn't help, but it's a constant daily battle to keep his skin in check. After a long day at CHOP, Lucas handled everything very well. He gets very tired much more easily these days and being in his chair for several hours aside from us getting him on the Echo table and other exam tables for changing him, just simply wiped him out.
Last Thursday, Lucas had his 4 week pentamadine IV at Monmouth and he was seen by Dr. Fisher. It was one of his better bouts with the IV and basically no problems with it this time. We've been trying to get Lucas to school as often as possible or as often as the weather permits us to travel. The Dec 26 blizzard dropped over 30 inches on us and it was very bad for several days. We manage to dig out with the help of our neighbors snow blower, but it still took 2 days and 10 hours. We had to clear a path in case we needed to call an ambulance. The snow is still here and after getting another 10 inches last Wednesday, we cleared that out in no time. After over 30 inches, 10 was nothing.
Mom has been dealing with numbness and pain in her head and spinal cord and is due for her annual MRI and check up with her neurosurgeon Dr. McCormick. There's a lot going on right now with our family and she's pushing it off until April. One of the reason's in addition to Lucas's care is that since late November, Dad has been busy, mostly with having the bulk of his CPA practice taken over by a local firm in Ocean Twp. Long story short, it's been a long 9 years of him working around the numerous hospital visits and inpatient stays by Lucas in addition to Mom's issues from 2009. Lucas has been in hospital the last 2 tax seasons for almost both seasons and with the 180 mile round trips to Philly and working into the wee hours of the morning to take care of everything, he's run out of steam. Lucas's well being and many appointments have always come first and he's somehow managed to get the work done, whether it's in the hospital or staying up to 5 a.m. With his own business, the only true benefit he gets is the ability to be with Lucas 7 days a week, but the work has to get done at some point and the last few years that flexibility has diminished. For now, the new CPA firm is bringing him on board to work for them with the flexibility to continue putting Lucas and the family first and when times are bad, they can pick up the slack so that he doesn't have to kill himself catching up. A long time client and close family friend Joyce has helped close the financial gap and at the some time enables us to put Lucas first. Some how we'll manage. With Dad turning 50 today on January 16, it's only appropriate that the changes we've made to keep pace with Lucas's increasing demands on us come in this new era of his life. Our only ambition right now is to just get by with our bills and to be there for Lucas and Abby. We've been making changes in our lives the last 9 years and as our priorities change, we have to change how we live. We look at these times with Lucas as our golden years and the only thing we have to look forward to is tomorrow with him and no further. We don't want to have any regrets.
Abby has tried out for RBR High School Dance Academy and is awaiting to hear if she made it. It would be terrific if she did, but our little 13 year old knows it's not the end of the world if she doesn't. She's been very good recently.
One last note, as we made these changes the last several weeks and came to realize that some how we'll manage our bills and Lucas's medical expenses, a friend from town contacted us with an idea. Ben Willemstyn and several other men from town had been planning for sometime to approach us with an idea to help with Lucas's expenses. They're planning in April to have a 50 mile bike race down the coast line to raise money for Lucas. If is a terrific gesture and they brought their idea to our attention a few days after Dad's decision. As one door closes, another opens. We will follow with more details later on. Also, thank you to everyone for the meals over the holidays. It was a big help with everything going on. God Bless!
Sunday, December 19, 2010 10:07 AM CST
THANK YOU FOR CHECKING IN ON LUCAS AND WRITING TO HIM!
The gagging episodes with Lucas have stopped. No one knows where they came from, what they were or how they even subsided. We tried the Miralax, but we're not sure if that even worked. Last Tuesday, Lucas had his Pentamadine IV at Monmouth and Dr. Fisher examined him. She called in Dr. Teitlebaum, Lucas's GI doc. Dr. Teitlebaum thought a few things may be going on with Lucas, but he felt right now he seems stable and to not even put him through tests that may not result in anything. He wouldn't rule out the galbladder at this point but left it at just keeping an eye on his vitals at home. Dr. Fisher said in her opinion, Lucas could have any number of major issues go wrong at any time, but we just can't predict or even know what would lead up to something happening. Everything in his body is compromised and she was especially not happy with his skin and recommended calling CHOP. We discussed going back to Bactrim instead of coming in for the Pentamadine IV. Bactrim has much more coverage for Lucas, but we've been down this road before and he's developed severe diarrhea which has caused up to switch back to the IV.
A call into CHOP resulted in us going up on the steroids to 60 mls a day for 5 days and then down to 40 mls and slowly tapering off from there. After just 4 days, his skin is looking better and the blotches have subsided. But here he goes again with battling his bones and fractures, but we're left with no other option but using steroids. This cycle is all too common for Lucas and has somehow become his baseline which we hate. Bumping up the steroids seems to negate any gains we make with calcium or pursuing other treatments to strengthen his bones. We have an appointment with endocronology/bone health on January 6th along with another Echo with cardiology.
We took Lucas to school the last 3 days of the week. We're down to just having him in his wheelchair 1 time a day and feel any more than that is too much for him. He's been more moody with TV and sometimes we can go through 3,4,5 or more programs until something works and he doesn't moan. What works for him today, probably won't work tomorrow. His pulsox has gone off most nights and it's usually his heart rate going lower. It's taking 2 of us to change him, so even with the nurse here, maybe a few times we've been out of the house together, but no more than a few minutes. As Lucas's care takes more time and energy, we keep pace with his needs and when we reflect on his health even a year ago, it has progressively required more and more to care for him.
Abby has been doing fine in school and dance. She's excited to get into the Red Bank Regional HS performing arts dance program next year when she's a freshman and her tryout/audition is early next month. She's really got her mind and hopes set on making the program and hope it works out for her. She is a talented dancer and her grades are good even with all the commotion and being sent here and there when Lucas is in hospital is challenging. We want to thank everyone for your support and wish you a Happy Holiday and New Year. God Bless!
Saturday, December 7, 2010 6:33 PM CST
UPDATE, TUESDAY, DECEMBER 7:
We brought Lucas home from CHOP Monday night. It didn't appear on Sunday that with his episodes still occurring that anything further was going to be done or recommended or tested. After Lucas urinated, they scanned his bladder and it was emptying properly. They did not feel it was caused by severe pain from his fractures, but Dr. Ewing, his Cardiologist wasn't sure about that comment. He reviewed the CT Scan and it said "healing rib fractures and compression fractures" and he felt that means they're still healing and are not healed, thus they could cause a lot of pain and that he has no way to communicate to us the severity of it. They told us to try and give him MiraLax and see if this helps move things through his intestines. As we said in the previous update, they feel its neurological and that the disease progression is causing his whole system to work slower and slower. We're trying that today. Before we left, a few doctors from Endocrinology came in and discussed Lucas. They want to see him in a few weeks. We believe Lucas deals with about 14 types of medical disciplines at this time. He's resting comfortably today and is glad to be home.
Lucas was admitted for his Transplant 8 years ago this week in Minnesota. We're grateful to God that he's still with us and cognitive, but this disease has caused so much suffering for him and we can only keep him as comfortable as we can. We think constantly of all the MLD families we have met and struggle each day like we do. And most of all, we always have a special place in our heart for the children who have passed on from this disease and their families. We will never, ever forget them. We appreciate all the encouraging comments from the postings and the food deliveries being offered. God Bless!
UPDATE, SATURDAY, DECEMBER 4:
On Thursday, Dr. Magnussson had us bring Lucas to CHOP's ER. He was having 15 minute gasping spells and shortness of breath just laying in bed without being moved and we almost called 911. He recovered, but not after scaring us. Dr. Magnusson wanted a CT Scan done at Monmouth on Wednesday, but we did not get insurance approval and had to cancel. We got approval Thursday morning after Dr. Magnusson got involved, but he called and said to bring Lucas in and admit him at CHOP. Lucas is now on the general floor on 9South. He had a CT scan at 3 a.m. Friday, and an echo and other tests. He had blood work done. Everything has come out negative. No new fractures on the ribs or spine. The fluid around his heart has increased some, but that's probably not it. Right now they don't know what's wrong or causing this. He's been doing OK in hospital and had a minor episode Friday a.m., but not like at home. The last few weeks have been very uneasy for Lucas and us, not knowing when he'd start gasping and fighting for his breath even with oxygen. His stomach has been very distended and tight, especially after feedings. He's got very little air or gas in his belly as we're constantly venting his G-tube. One thing we've been doing is keeping it mellow with limiting the types of cartoons he watches. Anything exciting for him was too much, so we limited what he saw, plus we didn't joke with him or get him laughing, which is not his environment. His only enjoyment is laughing at cartoons and our antics and we don't want to keep it too quiet or reserved, but if he has a deep laugh, he'll gasp and choke. They told Mom this afternoon that what may be happening is that his stomach emptying is slowing down and simply not functioning very well or the medical term is Ileus. His body is so twisted and his scoliosis has smushed everything out of place. His lungs aren't functioning very well, but sound clear. His system is possibly just getting weaker from working so hard all these years to compensate for everything. His GVHD has gotten much worse and Oncology is weighing going up on the steroids. Mom creams him every day, but his skin is just peeling off. He's resting comfortably right now and he hung in their very well with the ride to CHOP. He's had all the tests needed and we're thinking of bringing him home Monday and trying to get him back to school for a change of pace and scenery for him. After completing this, Mom just called and said Lucas had a very bad gasping spell and the nurse and doctors were able to see it for once. More tests are now being order. God Bless!
SATURDAY, NOV 27 UPDATE FOR LUCAS:
Nothing has changed for Lucas. He's only been out of bed once since last update and that was Wednesday when his new Hill Rom bed arrived. Transporting him went OK but he didn't last long in his chair and fortunately everything took about 1 hour for his new bed to be set up. It's easier to work and more comfortable for him. Need 2 people and oxygen each time we move him. A lot of suctioning the last few days. We don't know why his stomach is hard and distended even with some BM's and urinating. He's gasping from laughing and we've tried to tone down the programs he's watching. Things are a bit more mellow now with keeping him quiet, yet entertained. We're using the Valium as needed. He's got a few appointments at CHOP Tuesday and we're going to cancel them. He's been out of bed for 1 hour in about the last 10 days. He's been more restless the last several days and we've been in there calming and soothing him. His stomach has been jumping as if he's in pain. If nothing has changed by next Wednesday we may have to take him to hospital for testing. We appreciate everyone checking in on Lucas hope everyone had a Happy Thanksgiving. God Bless!
SUNDAY UPDATE FOR LUCAS:
It's become very hard to change Lucas without him gasping or gagging. The thoracic appointment was canceled for Tuesday as the doctor felt it was best to keep Lucas in bed and not move him. He said we're probably right with more fractures having occurred and only a waste of time and discomfort for Lucas to see him. Dr. Ewing from Cardiology called and said it's probably not the fluid around the heart and agreed it's more fractures in his ribs. He concurred to keep Lucas in bed and not get him in his chair. Not moving him out of bed comes with other complications. He's getting Edema/fluid in his legs and more discomfort. We figure from this point forward, nothing will drastically get better and probably more fractures will occur and it will always require 2 people to change him. We started him on Valium but as usual it stops him from urinating, so we've stopped it in hopes that he'll pee more regularly. But we may have to start it again if the pain continues. He's on regular doses of Tylenol and we have to check with CHOP on Monday to go over things. He needs oxygen each time we move him. We're trying to avoid catheterizing him. We need to avoid any procedure that could cause infection. He seems to be in the same condition right now that he was last month when we admitted him to CHOP, but we're not going to gain anything having him in hospital. We can manage at home with our nursing help. Very long days for Lucas right now, but somehow he's been sleeping pretty well through the night with the oxygen. God Bless!
FRIDAY UPDATE FOR LUCAS:
Since Thursday morning Lucas has had a very rough time being moved. We believe he has additional fractured ribs and he has an appointment with a local Thoracic Surgeon on Tuesday morning. We are treating it right now with Tylenol, but we will be giving him valium today and will see if this reduces his pain. We are keeping him home today and in bed again as we believe moving him into his chair is too painful. We're anxiously waiting for his new Hill Rom bed to arrive which would help position him like he is in his wheelchair, but without moving him. He had his Pentamadine on Wed at Monmouth and was doing OK from that, but not sure what has brought this on. God Bless!
THANK YOU FOR CHECKING IN ON LUCAS!
We took Lucas to CHOP Cardiology today for another Echo and to see Dr. Ewing. The Echo showed the fluid in the Pericardium Sack is still around 200 mls and that's the same amount as the last Echo results. Lucas has been on Indocin since he left the hospital last month and Dr. Ewing had thought that the fluid level would have come down. He feels the Pericardial Window is working and told us to halve his daily dose of Indocin from 8 mls twice a day to 4 mls twice a day. He wants to see Lucas in about 4 weeks for another Echo. We'll see at that time if the Indocin has been working and if there is no change in the fluid level, he'll probably want Lucas to stop receiving it. The long term side effects are liver damage, so he shouldn't be on it too long.
Lucas has developed a Granuloma around the G-tube sight, and we've been applying Silver Nitrate sticks to burn it off. The norm for Lucas right now is for him to receive oxygen through the night and have the Pulsox hooked up all night. He's been sleeping better which means that we've been sleeping a bit better. We have had the baby monitor on in his room since he came home from Minnesota in 2003 and his pulsox has only gone off a few times at night. Lucas has been receiving his IV's at Monmouth every 4 weeks and goes again next week. We're back at CHOP in 2 weeks for appointments with Dr. Magnusson and Oncology.
We've been taking him to school every day possible. A few days we've gotten him to school and had to come right home due to bowel movements. The school is putting in a changing room and we may be able to use the lift to change him there rather than go home. Each day Mom spends about an hour creaming Lucas from head to toe in trying to keep his GVH in check. With winter around the corner, it gets difficult going places, but recently, we've seen him not enjoying being out of the house. He's happy just watching Pokemon and his cartoons at home.
Abby's been doing fine in school and dance. This Saturday she's performing at halftime of the NJ Nets game in Newark. At the same time, we'll be with Lucas at Gethsemane Lutheran Church/Good New Preschool in Keyport for they are having a Spaghetti Dinner Benefit for Lucas's medical expenses. They have been having a benefit each year since 2003 for Lucas and he enjoys going back to where he went to preschool and spent a lot of time in the Timeout Room. He enjoys seeing everyone and we're very grateful to everyone for having the dinner for Lucas. The Church is located at Main and Maple about 5 blocks east of Route 36. With colder days here, Mom has been feeling more pain in her neck, head and back. She goes next month for her annual followup visit with Dr. McCormack. Not sure if she needs another MRI, but the side effects of the tumor are still there and sitting up without support for her head is not easy, but she sure doesn't let it slow her down in taking care of Lucas. God Bless!
Friday, October 15, 2010 9:58 PM CDT
FRIDAY, OCT 15, UPDATE!
Lucas is home. He was discharged today at 1. After several more tests, it was discovered during a CT Scan that Lucas has several rib fractures. Some occurred a while ago and have healed, but a few are still in the healing stage. They are not 100 percent sure, but feel those fractures could have contributed to his breathing and gasping issues. They said rib fractures can be very painful. They believe there is also a shoulder blade fracture and it is healing. These fractures which are due to his brittle bones from steroids were probably caused from just moving and positioning him in his wheelchair. The last Echo results showed a slightly lower amount of fluid around the heart and Dr. Ewing is hopeful that keeping Lucas on Indocin (anti-inflamatory med) will continue to bring the fluid down. They believe the Paracardial Window is partially working at this point. This stay lasted 12 days for Lucas and Mom. The doctors and nurses on the general floor were very good. Lucas has many follow up appointments in the next several months with cardiology, bone health, diagnostics, oncology and orthopedics. He's resting comfortably and we have to be even more careful now with moving him. We have to keep a closer eye on him and monitor his vitals around the clock. He now requires oxygen throughout the night due to central apnea. Mom and Lucas are glad to be home. Thank you to everyone for helping out with Abby and sending messages to Lucas. God Bless!
MONDAY, OCT 11, UPDATE!
Lucas had a sleep study done Friday night. He and Mom had to stay in a dark room with no TV or music over night and was unable to change him for fear of waking him. He managed OK and the test showed he has Sleep Apnia. This is only a very small piece of the puzzle and may answer why night time oxygen was helping and but also opens door for more questions with him. Still waiting for the final results. He's had another Echo today and it has showed that the fluid has come down a little, but not enough to say it's better. Fortunately, Dr. Ewing got back today and took over Lucas's care and became the point person. He want's Lucas there for more observation and another echo on Thursday. He said he may be able to come home Friday and that depends on the tests on Thursday. He still feels strongly that they may have to go in and do another Paracardial Window. He feels the window is working, but not as well as hoped. Lucas hasn't De-sated too much the last few days. They still don't know where this fluid around his heart is coming from. Pulmonary had chimed in and had some tests done today to develop a baseline for Lucas. They feel his lungs are very compromise and of concern, but it's simply a day to day ordeal to see how he does. Today his heart was racing in the 140s and it normally sits in the 90s. He's still very alert and watching plenty of cartoons. Dad and Abby were there all day Sunday and we had Lucas in his chair a few times. He did fine. At this point, it's hard to remember all the tests and what's been done, but he's hanging in there OK. Mom is doing OK. We appreciate everyone's prayers and concerns for Lucas. God Bless!
FRIDAY, OCT 8 UPDATE!
Thank you to everyone for checking in on Lucas and sending your prayers!
Many doctors are working very hard to figure out what's affecting Lucas. Another Echo showed what looked to be a mass on his right ventrical of his heart, but a preliminary (not final report) CT Scan late last night has tentatively ruled that out. He's now being tested for Epstein Barre Syndrome this morning. Several disciplines are involved and have asked many questions and are trying to figure out anything this could be other than the fluid. He still De-sats while laying in bed without being moved. His breathing status changes all the time. The floor doctors have informed us that they do not want him going home in this condition and they have to figure out something, however, we may just bring him home and deal with it here. An option on the table is for Dr. Fuller to go in and drain the fluid and not repair the Paracardial Window. This is less intrusive and they want to monitor his fluid again. But that's not likely now. Mom is taking care of him round the clock and Dad is bouncing back and forth to Philly. Planning to take Abby Saturday and spend some time together. She's in 8th grade and handling this bout better than previous extended hospital stays. She's stepped up and doing her part with school, etc. We hope someone can come up with something soon and recommend what to do so that Lucas can come home and not be so labored. God Bless!
UPDATE ON LUCAS, Wed, 10/6!
Lucas was having breathing problems Monday morning and we drove right to CHOP's ER. He managed OK in the car through the heavy rain. They took him right in. He spent about 9 hours in the ER, most of which was trying to determine who wanted him. Cardioloy ICU and then their general floor said it's not a cardiology issue, ICU was a no, Seashore house was a no, Oncology/BMT said Cardiology should take him. He ended up on a general floor and we've been happy with everyone there. Long story short, the echos have shown more fluid built up around the heart and some is now around the lung, not in the lung. Dr. Ewing his Cardiologist is out of the country and can't be reached. Finally Dr. Fuller who did his Paracardial Window gave her view. She does not want to drain the fluid from the sack around the heart nor perform another window. She says we need to know where the fluid is coming from and putting Lucas through an intrusive surgery and other procedures to just have it come back is not good for him. They must find out where it's coming from. Last Spring they couldn't figure it out and the fluid gradually came back and has reached over 300 mls as of today. Dr. Magnusson (Complex Case Doctor) has now gotten involved and will coordinate all the doctors and try to get an answer. Oncology has been up to visit him and check out his skin. We had to go over Lucas's history a few times the past several days and that's very tiring. They X-rayed his lungs and it definitely showed the lungs are very compromised and not very efficient for Lucas. He's working hard to breath and we've had the oxygen hooked up at times. Pulmonary has gotten involved and weren't happy with his lungs. Basically several of Lucas's doctors are now involved and they're trying to figure out anything possible. When we turn him or move him, he huffs and puffs and has a hard time. This could be his baseline and we could possibly have to deal with these issues with no other options. Even giving him oxygen doesn't help when moving him. But it's not all the time. He did De-Sat with nurse in the room when we changed him and he went down to 79. Lucas has never made anybody's job easy and it's becoming a bit frustrating not being able to figure this out and help him. Mom is with him and she finally got a chair with a high head rest for her neck. She still has a problem holding her him up for extended periods of time. We hope something will make sense to them in the next day or 2 and we can help Lucas. God bless!
THANK YOU FOR CHECKING IN ON LUCAS!
The last several days for Lucas have not been easy. His breathing has worsened and he receives oxygen through the night. He's De-sated and gone into the mid 80's the last few days. Changing him has become very difficult and we try to do it as fast as we can without jarring him. The nurses have seen each day get worse than the other. Drs. Ewing and Fuller in cardiology told us to wait until he started having constant issues and we believe Lucas is there now. We are planning to keep him as comfortable as possible on Sunday and monitor him closely and contact CHOP Monday morning that we are on our way with him and see if he should go through the ER or right to Cardiac ICU. We knew with the fluid building up around the heart that Lucas would need to go into surgery for a new pericardial window, but it seems like things happened so fast the last few days that we can't wait any longer. The days and nights of late for Lucas have been more difficult with his GVH flaring up more and more and when one spot is treated and looking better, he breaks out in another spot. He's been more moody each day and a cartoon that works and settles him today, won't work tomorrow. The nurses are finding it harder to find what he likes during their day here and they're finding him more restless and uneasy. We'll have to see the game plan on Monday. We're not happy with the idea of putting Lucas through another surgery and are concerned with how he'll manage. Thank you for all the prayers and concern for Lucas! God Bless!
Friday, August 27, 2010 10:13 PM CDT
UPDATE ON LUCAS:
Lucas had his IVIG at Monmouth MC on Wednesday. It took much less time than anticipated. It seemed to take a little out of him and it caused him more BM's than usual. His Pulse-Ox monitor was going off all night long with his heart and breathing levels that we set at night time being exceeded. He was up almost every 30-40 minutes struggling to breathe and we gave him oxygen until his breathing leveled off. We got him up early Thursday for his Echo and Dexascan at CHOP. He had terrific techs doing both tests. As soon as his echo had started, we saw more fluid around the heart than was there before. The tech knew we can read the results. A cardiologist came in to do the tests again and try to get different angles and shots. Dr. Ewing informed us that the last test showed about 180-200 mls and he now estimates that it has increased to about 300 mls. Not good news for Lucas. Turning him for dressing and changing hasn't caused him to de-sat as was the case earlier this year when it was about 550 mls. Dr. Ewing called Dr. Fuller who had performed Lucas's Pericardial Window in April. They're still stumped as to where the fluid is coming from, but a decision was made to monitor Lucas closely and do nothing now. If he starts to gasp while moving him we'll have to get him to CHOP immediately and Dr. Fuller will have to go in and redo a new pericardial window. He's scheduled for another Echo in October and right now to us, it just seems inevitable that the surgery will be needed. The first time around was very stressful and the doc's were concerned with all his complications, but he got through it. It was a bitter pill to swallow because they said this procedure has a 100 percent success rate, but Lucas just proved that wrong.
He went up for his dexascan and they wanted to measure the strength of his bones. The tech was told to do several scans, but only one could be done with Lucas. He can't sit up, nor be on his stomach, and that only left one possible scan with him on his back. They can still measure his bone density with that shot, but it would have been more informative for them to have other scans. He did well, but no results yet. It was a very long few days for Lucas and he was up several times Thursday night and needed oxygen. Lucas goes back to Monmouth on Tuesday for his Pentamadine IV. We know these IV's are causing him severe discomfort and even with Tylenol, he's out of sorts. The day at CHOP was very long and the ride home with traffic was miserable. We don't like being in traffic with Lucas in case something happens. The stopping and going jars him too much, but we had no choice. BMT has given us the orders to lower his Prednisone/Steroids to 10 mls in the morning and 7.5 mls at night starting today. We'll be keeping a close eye on his skin, especially his eyes, neck and the areas in the arm pits and elbow.
Lucas missed the last 2 days of school due to the hospital visits, but he's now off until Sept 7. We got him to school for most of the summer program and could use a break ourselves from transporting him and waiting for over 2 hours to take him home. We finally got his EZ Lock installed on his new wheelchair and that's been a time saver for getting him in and out of the van. Abby had a terrific time in NYC at culinary school. She's had a good summer with keeping busy with friends and watching kids, but most of all her cooking and baking has been terrific. We're trying to get her to clean up after herself, but she is cooking 1-2 meals a week for us and they're very good. Abby celebrated her birthday party last week, even though she'll be 13 on Sept 18. When school starts, she'll be in 8th grade and was chosen by the principal with 3 other girls to work in the office in the morning and help out for the year. Thursday marked our 20th wedding anniversary. Abby and her friend made us a meal on Tuesday, but we celebrated Thursday in the CHOP cafeteria with Lucas after all his appointments. We'd hoped the traffic would subside, but too many accidents.
We have spent half our marriage caring for Lucas 24/7 and never let being tired or anything else stop us from working together to be at Lucas's side for a second. Except for Mom being bedridden last year for 3 months after her surgery to remove her spinal tumor, we have worked together taking care of Lucas. We communicate and discuss all of his concerns and needs. The nursing has helped us keep some sanity and be there more for Abby. In the last few weeks we've received some encouraging comments from people about what they see with our family and the sacrifices and dedication to Lucas and Abby and we truly appreciate it. We do what we have to do for Lucas, to keep him as happy and pain free as possible. Since everyday for him is struggle to stay alive, you can never feel sorry for yourself. We're human and do have our down days, but he's struggling and fighting and we will never let our guard down for him. In reflecting on Lucas's journey, we are extremely grateful and blessed to have been helped by family, friends and community. Heaven only knows what situation we'd be in without all the help! God Bless!
THANK YOU FOR CHECKING IN ON LUCAS:
It's been a while since our last update with Lucas's cardiology concerns. His last ECHO showed around 200 ccs of fluid around the heart and the norm is 15-20, however, they determined this could be Lucas's baseline from now on. He goes back Aug 26 for another check up. We've noticed the last few days changing him that his breathing levels have been going down as we roll him and we are hoping this doesn't mean the fluid is building around the heart even more. The last few days have been a little similar to the issues he had early this year (except for the severe gasping) that led to the pericardial effusion. We have been giving him oxygen over night as his levels in the early hours have been dropping in the 80's. He had a visit to CHOP Oncology last week and had some extensive bloodwork done. His white count has gotten a little better, but his IGG level which measures his immune system was low and they have recommended that he get IVIG every month for the next 3 months. This is an IV that lasts about 3 hours and they will test his level each month to see if it has improved from the IV. His skin overall is not too bad, except for the flare ups on his face
After some discussions with DR. Barsky in Bone Health last month, we had determined that Lucas last few hospital stays came right after his Pamindrinate IV and we decided to stop giving that to him. Dr. Brown in Oncology explained that the kids who generally receive that treatment have strong immune systems and there are no studies or facts to show how it would work with a child like Lucas whose system is compromised. They are looking into giving him Zometa which is a once a year medication to help with his bones. They will see if he's even a candidate for it. We hope to find out this week their game plan.
He continues to go to Monmouth for his Pentamadine IV every 4 weeks and CHOP gave the OK for his IVIG to be done at Monmouth too. Lucas is still going to school, even through the heat of July. We managed last month to get him out of the house in the late evening before getting him into bed for a stroll through the neighborhood most evenings. We go for car rides some days just to get him out of the house. He has been perspiring a more this summer.
Abby has been keeping busy this summer with watching kids, dance and cooking with friends. Mom and her go to NYC next weekend for Abby to attend culinary school and to stay with her uncle and aunt. Back in early July, we spent a day/night at a hotel in Paramus, NJ (Mom's old hometown). We took the kids to their favorite county zoo to visit the monkeys and later we went to IKEA for some Swedish Meatballs. Lucas loves going through the store and for some reason, he gets a big kick out of the 3 of us getting Swedish Meatballs. We bought a large poster of a double decker bus in London and when he saw it, he couldn't stop yelling with happiness. It brought back so many memories for him which caused a long seizure. We've noticed him getting more seizures with stories that go back when he was a little boy and also when he's not concentrating on TV. Due to the increase in seizures, we took the precaution to get some Diastat, just in case his seizure would last more than 5 minutes. It's been a year this weekend since Mom had her spinal surgery behind her head. She's come a long way and still has complications and some days her body will tire easily, but Lucas has contributed greatly to her willpower to recover. God Bless!
Friday, JUNE 20, 2010 9:10 AM CDT
UPDATE, FATHER'S DAY:
Lucas had his followup visit with Dr. Ewing in Cardiology Thursday. He saw the difficulty in moving Lucas and he had the Echo machine brought to his room and he watched it with the Tech. It showed that the fluid around the heart has not increased, but not decreased since last time but overall this was terrific news. He thinks 200cc's of fluid is Lucas's baseline and that we have to monitor his breathing and keep a close eye on it daily. The game plan is to go back in a 6-7 weeks for another Echo check up. The bags were packed, but we were so glad to come home and for the first time since early March, Mom has unpacked her bags and they're in the basement. He's needed oxygen here and there, but nothing steady. Turning him is better. The GVHD is still flaring up and that's a daily battle. Lucas is almost 4 feet and weighs 67 pounds, even though he is 16 years old.
The weather is warming up and making it harder to get Lucas out. He's in his wheelchair twice a day for about 2-2 1/2 hours each time and the rest is spent in bed. They think what may have helped keep the fluid the same has been moving him in bed and getting him up those few times a day. He's more tired each day, but when he sees something he likes on TV, he'll laugh and when it's done, he'll moan, so he's communicating with us. His school went to the boardwalk the other day and he enjoyed it at Pt. Pleasant. Managing his wheelchair on the boardwalk was hard. It bounces and causes him to jar around. We had to go very slow, but it was a good day for him.
We want to wish all the Dad's and families a happy father's day. This is a special day for us to have him home today. God Bless!
UPDATE FRIDAY, MAY 28:
Lucas had a Cardiology appointment yesterday at CHOP with Dr. Ewing. He had another Echo done and we were very disappointed with the results. It showed that the fluid has increased to 200 mls around Lucas's heart, up from about 130-140. This has Dr. Ewing concerned because he's now doubting if the Pericardial Window surgery is even working. Normal fluid around the heart is 15-20 mls. When Lucas first had his fluid drained in March, it was about 525 mls. Dr. Ewing was perplexed because in 15 years of practice he's never seen this surgery not work for kids. We don't know where the fluid is coming from and we can't contain it with the medicines and surgeries that have been done. Dr. Ewing said that Lucas doesn't seem to be in too much discomfort and appears to be alert, so he's advising us to go home and keep a close eye on his breathing and blood pressures and to come back in 3 weeks for another Echo and if another increase is detected, he'll have to be admitted. He's consulting with Dr. Fuller who did the procedure to figure out what is happening in her opinion. Dr. Ewing has learned real fast that Lucas is not the normal sick kid and he challenges their knowledge and abilities. He's had GVHD for 7 1/2 years and Minnesota, Hackensack, CHOP and National Institutes of Health in Wash DC have all said it normally will go away in 1, 2, 3, etc. years. Right now with the tapering of his steroids, his skin is flaring up. Through all this, when we put Lucas in the back of the van with his DVD's, especially Pokemon, he's happy and things appear to be not so bad. But, he's struggling every day with many issues and still he gets to the next day. We've had to give him oxygen on several occasions and we're not even moving him when it happens. Tonight was one of the 2 nights we get out during the year and go to friends Memorial Day Party, but we told the nurse to go home early and decided to stay home tonight. We just feel like staying home and keeping it quiet.
On a positive note, Lucas's incisions with all the tubes and surgery are healing well. We're fortunate to have a family friend Dr. Wurmser a plastic surgeon/wound care specialist help out when needed and he removed Lucas's stitches and can see they're healing fine. Through all of Lucas's turmoil, we're watching Abby grow into a young woman as she's trying to find her way. We both realized that she's just like us when we were growing up. Friends with a lot of kids, but basically quiet and not into being seen and heard unless she's on the stage dancing. She's an excellent dancer and at least some good genes came through from Mom and Pop. She's winding down 7th grade and we're trying to get her to get some flyers out for mother's helper. She cooks us 1 meal a week and loves playing with the younger kids in the neighborhood. The summer isn't our best time of year as we're usually stuck in the house with Lucas due to the heat, but at least it's not snowing anymore.
When Lucas was in CHOP, we learned of a family from Easton, PA (Dad is from Phillipsburg, NJ across the Delaware River) who had their 2 1/2 daughter Makaeya diagnosed with MLD back in April at CHOP. Lance and Jamie Wheeler who also have a 9 month old who does not have the disease are dealing with this right now. Mom has called to offer help and advice, especially with the spasms and Dad has been up to visit Makaeya and the family. We let them know that we're here to help and they'd like to visit us in a few weeks to meet Lucas. Please remember Makaeya and her family in your prayers as well as all the other MLD children. God Bless!
Thursday, May 13, 2010 9:24 PM CDT
LUCAS IS 16!
Lucas woke up at 5:30 am to his 16th birthday. Abby, Mom and Dad sang Happy Birthday to him and he was smiling. His birthday party on Saturday went very well. The website pictures were updated and show a "Lobster Banner" for Lucas's 16th birthday that our friend Doug Glassmacher and the Bruno's from town made for Lucas. He was so happy to see it. Thanks to Hometown Bob Selsky for the beverages, Tom Caruso for making Lucas's Pokemon cake and Pete Roskowinski for hors dourve's. Lucas was very subdued and tired, but he managed to perk up during the afternoon. We were very grateful that he was able to come home and be here on Saturday. Since being home from CHOP after 6 weeks, Lucas got his new wheelchair on Tuesday and is sitting comfortably in it, although, we're limiting his time out of bed. He gets so tired and subdued and has to get back in bed so much sooner. He has been unable to go back to school since being home because the docs haven't given him clearance to do so until today. He'll be going tomorrow, Friday.
Today, Lucas spent his 16th birthday at CHOP all day as an outpatient. Our travels were disrupted with accidents and construction, but he had his Cardiology appt. with Dr. Ewing after his ECHO was done. Mom had packed her bags again just in case the fluid was excessive after having his Pericardial Window surgery. Dr. Ewing said the fluid has unfortunately built up around the heart again and it's probably around 125-150 mls. Not enough to be re-admitted in his opinion but enough to be concerned and have Lucas back for another ECHO in 2 weeks. The window appears to be directing the fluid into his abdomen area, but it's still building up in the heart area for some reason. We still don't know how this is all happening and he said it occurs more in adults than in kids.
We then went over to Oncology to meet with Anne, NP and discuss the steroids. It was decided to slowly lower again to 20 mgs a.m and 10 mgs p.m. per day for now. We then went over to his Nephrology appt. to discuss his blood pressure. We met with a new doctor and discussed Lucas's blood pressures, history and his meds. Lucas's blood pressures have stabilized the last few days according to our records, but he still believes they are still too high for his age and weight. Lucas is 65 pounds and is 3 ft. 10 inches in length. He admits Lucas's condition is a very complex and hard to pin point causes, but he gave about 4 possibilities for the high readings and decided to change his meds a bit. He increased his Lisinipril to 15 mgs a day and Norvasc to 5 mgs a day. He want's to see Lucas in 2 months in hopes that when he comes back, the readings are better and that we can drop the Norvasc. It was a very long day for Lucas, but although mixed results, we were glad to come home. God Bless!
Friday, May 7, 2010 3 pm
UPDATE, FRIDAY, MAY 7:
Lucas was discharged Wednesday afternoon, but almost was transferred to the Renal Unit due to his high blood pressure. The Docs in PICU didn't want to send him home until Nephrology was consulted about what to do. They called back and advised to add a small dose of Norvasc twice a day (he was off Norvasc for 6 weeks), but to monitor it closely at home and make sure the meds don't cause it to go too low. Once his BP got to 136/98, we got the discharge papers ASAP and left for home. His BP has been going up and down the last few days, but we're managing it. Lucas and Mom were glad to come home. He's been waking up through the night and not as alert as before, but he's home. Tomorrow is his family birthday party and we're looking forward to it for Lucas. He goes back next Thursday to see Dr Ewing in Cardiology for another Echo, and then a visit with Nephrology and a stop to Oncology and more follow up visits after that. He gets Botox in 2 weeks and he's overdue. He's very spasmy now and needs a dose. His right hand is very shaky and jittery, but we hope it will subside once the steroids are lowered more. God Bless!
UPDATE, TUESDAY, MAY 4:
Lucas is still in PICU and has the drain in his chest as Dr. Fuller wants to make sure the Window is working. She explained that this is a new procedure and the difference is where the window will drain in Lucas's body. The hope is that it will drain away from his lungs and not cause any more issues. Dr. Applenc came in from Oncology and told us to lower his steroids down to 40mgs a day. Things change day to day for Lucas and now the game plan is to take out he drain later today and if all's well to come home Thursday. If that works out, we'll have to go back next week for another Echo for followup and for Lucas to visit Oncology to see if the steroids could be lowered again. His skin is looking good now due to the increased steroids. Lucas had his Pamindrinate treatment last night for his bones as it was scheduled for last month, but it was decided by Bone Density to give it now. With all this happening, Lucas's blood pressures have skyrocketed. One yesterday was 164/126 so they upped his Lysinipril BP med again, but so far Norvasc has not been re-introduced. He's alert and watching TV. Mom is hanging in there and anxious to come home, but we know it's not worth it if Lucas isn't ready. Our family plans right now are to hold Lucas's 16th birthday party Saturday. He will turn 16 on May 13. He was born Friday the 13th. We are simply grateful and blessed to have him with us now and still able to mentally understand us. Somehow Lucas reaching this milestone always brings us back to the difficult days for him in Minneapolis and his fight to stay alive ever since. We think of Dr. Krivit often and remember how much all the children meant to him and his dedication to the families. The MLD families and the children we've met are always in our thoughts and prayers. Thank you for checking in on Lucas and helping, we do truly appreciate everyone's time and sacrifices for Lucas and our family. God Bless!
APRIL 29, THURSDAY UPDATE:
Lucas's scheduled surgery for Wednesday was moved up to Thursday as his Cardiac Surgeon Dr. Fuller had an emergency case Wed. The surgical team was in all morning to see Lucas and discuss a game plan. We showed them how to move and handle Lucas. After some discussion, the Anesthesia doctors weren't sure how to approach Lucas. They always intubate for these procedures, but they were concerned with Lucas that once they put the tube in him that there is a high risk that it may not come out and their fear is that it would cause him permanent cognitive damage. We're trying to convey in this update how they explain to us their concerns and they said we're dealing with a quality of life issue for Lucas. He needs this surgery to have the peracardial window done, but they feel the only way to approach it is to put him under similar to his other procedures with a combination of drugs and hope that will do it. We've always known that any major surgeries for him were not an option for risk of infection and his general fragile health to even survive one. It was difficult to hear them be concerned and it just brought out what little could be done for Lucas if future surgeries are needed and can't be done. In any event, the procedure went well according to Dr. Fuller and the anesthesia team's approach worked this time. Lucas has a tube for drainage in his chest for the time being and it should come out Friday PM. He was not responsive the rest of the day watching a few Pokemon shows with no expression and then fell asleep at 4 pm and has been asleep ever since. The game plan is to take out the drain and monitor his heart to make sure the fluid is not building up. Dr. Fuller said if all is well he could go home in 3-4 days. The PICU docs were concerned that the window would not drain all the fluid into the abdomen cavity, but also work it's way to his compromised lungs and cause breathing problems again. We have to wait and see at this point and just be glad that he made it through surgery and is resting comfortably. Mom is tired and her neck and shoulders are sore. Her head is getting stiff and she's finding it hard at times to keep her head up. We both agreed that if Lucas has to leave PICU, that we want to come home and not go to the general floor. Once again, we're very impressed and happy with the staff at CHOP and are thankful that Lucas is receiving such great care. Thank you for the meals, postings and prayers for Lucas. God Bless!
UPDATE APRIL 27:
Lucas was admitted to CHOP's Cadiac Care Unit yesterday in preparation for having surgery on Wednesday. The ECHO showed more buildup of fluid around the heart and that's all they needed see. The scheduled the Paracardial Window surgery on Wednesday. To our surprise the surgery does not require any prosthetics/catheter for the fluid to drain in the abdominal cavities. It is done laproscopically and should take about 30 minutes. The problem right now is that they've explained that it will drain with gravity and we must find out if Lucas is in bed 20 hours a day and gently raised due to his bones, will the this procedure be effective? The doctor is coming in today to answer any questions. Mom was at least glad to be home for 5 days, but we anticipated going back to CHOP at some point as the increased steroids and Indomethathen medication wasn't changing much when he was in hospital. Hard to say when Lucas could come home as they know his recovery will not be the norm. God Bless!
LUCAS CAME HOME TUESDAY NIGHT!
Tuesday was a long, drawn out day for Mom and Lucas as to what to do and could he go home. An ECHO showed that a large amount of fluid had accumulated around the heart again. Not enough that they felt to keep him in hospital as he is not having any complications right now. However, a repeat ECHO will be done next Monday to see the if the new medicine Indomethecine and larger dose of steroids is keeping the buildup in check. If not, he will have to be admitted again and the Cardiologist Team will have to insert a Pericardial Window, which will drain the fluid into his stomach and be permanent. This is a last resort in which we're all trying to avoid in putting Lucas through another surgery and having something foreign in his body, in which he hasn't had good success in the past with. Mom was glad to sleep in here bed and just be home with Lucas. Although, we were up several times last night with his monitor going off due to his oxygen and heart rate levels going down. He's only on 1 blood pressure right now which is even half the dose prior to his admission 3.5 weeks ago. Thank you for checking in on Lucas and the prayers and support for him. God Bless!
Thursday, April 14, 2010 11:00 PM est
UPDATE WEDNESDAY 4/14:
A joint decision was reached today to not have a pericardial window inserted in Lucas's chest to collect the fluid. They've informed us that Lucas will continue on the indomethacin and be put on a strong daily dose of steroids of 60 mgs per day for 5 days with tapering to lower doses in hope that will reverse the fluid buildup. He's accumulating too much fluid each day, well over 30 mls a day which is not what they wanted to see after having the drainage tube put in his chest. They only want to see less than 15mls per day of fluid drain for 2 days straight until they will consider removing the chest tube. The amount is decreasing as 3 days ago he drained 80mls. We are very concerned and disappointed that it has come to this. We understand we have limited options for Lucas right now, but we've been at this for so long to taper down off steroids and hope that his GVHD would burn itself off, as we have been told which normally happens with transplant recipients within a year. For Lucas, it's been some 7 1/2 years post transplant with GVHD and his Xrays show how awfully thin his bones are. For right now, he's still in PICU, while he has the chest drain in, but they may move him over to Oncology for Dr. Bunin to watch over him once it is removed. She's taking over the monitoring of his steroid treatment. Not sure when he and Mom will be home. Mom is tired and sore. Dr. McCormick said she's made great strides and Lucas and Abby have contributed to her determination to overcome her health issues, but she's still recovering and having tough days on her own. Dad has wrapped up his busy season and heading over to Philly with Abby and Sam's Mom Thursday. Mom is so involved with the Doc's and the decisions regarding Lucas's care and taking care of him that she wants to remain with him and allow Dad to stay home and take care of Abby and try to get back on his feet from 3 1/2 months of no rest. Lucas is resting with a steady flow of DVD's and unable to get in his wheelchair with the chest tube still in. We want to thank everyone for your concerns and prayers and messages of encouragement for Lucas and our family to hang in there each day. Thank you to all with helping with Abby and letting Dad get work done and to all of our friends and clients for all the financial support to help us. With all that's going on right now, we still feel very fortunate to have so many giving people help Lucas and our family. God Bless!
LAST UPDATE:
Lucas went into the Cath Lab to have the surgical procedure performed this afternoon. Dr. Gillespie of Cardiology did the procedure and took out some 500 cc's of fluid again from around his heart. They decided to put in a chest tube for drainage. Lucas did find and was waking up out of surgery must sooner than they expected. We explained that the anesthesia where's off fast with him, however, for the next several hours he was quiet, but alert watching cartoons. A few smiles but quiet. They want to monitor how much more fluid is taken out. The Cardiology team strongly believes it's GVHD and the course of action may be to raise his steroids again. They're thinking that the lowering/tapering the last few weeks may have brought this on. They think he's always had fluid around the heart, but with his scoliosis worsening and his lungs collapsing, the lowering of the steroids this time around allowed the fluid to build up much more and impact his lungs more than ever. His bones are so brittle and fragile and the thought of having to substantially increase his steroids is not the course of action we wanted to hear for Lucas. Unfortunately, his body needs them in doses that aren't good for him, but what options are left. He's been racing against the clock for several years and battling the severe side effects. We lowered them before with terrible results, but we had to try. On Friday they will do another Ecco to see if the fluid has come back. Mom is a bit tired, but doing there what she does at home. The nurses know she does his meds, changes him with help and skin care. The staff at CHOP's PICU have been great. Abby is staying at friends and anxious for Lucas to come home. Dad has a little breathing room as the only good thing to come out of all the bad weather is that our county was declared a Disaster Area and the tax season deadline was extended to May 11, thus taking some pressure off right now as he's been going to CHOP every other day so far. We want to thank everyone for supporting Lucas once again and helping with food and Abby. God Bless!
UPDATE Wed 4/7:
Sam is unable to access Lucas's website to update and Dave is swamped with deadline approaching and in CHOP every other day. Keeping Abby busy and staying wherever for right now. They don't know what's causing the fluid with Lucas other than possibly GVHD in that area. Lucas has had only to our knowledge GVH on the skin, but Cardiology said with his White Blood Cell count at 2.2 now for the some time, they believe it's GVH. There won't be many white cells in that region as he doesn't have to many in the first place. One more Ecko for Lucas today and maybe Thursday Dr. Hanna will do the procedure this time in the Cath Lab. The cardiologist told us yesterday that the location and access to Lucas's heart is very difficult and they're not sure if it can be done, but they'll determine that Thursday. If it can be done, he'll probably leave a catheter for drainage. Lucas had a tough one last night with gagging and choking. He's very alert, unlike last year, but we're all frustrated without knowing exactly what's causing this and to come up with a game plan. Sam is hanging in there again. God Bless!
UPDATE THURSDAY NIGHT:
Dr. Hanna decided it was too risky to go back in and remove the fluid that has built up again. He estimates another 500cc's, but it's in a different area of the heart. They want to monitor it closely and see if it goes down or gets worse. The want to do more tests on Monday and see if anything different over time. He's had more ultrasounds, a CatScan and input from all the disciplines and tests of the fluid, but no answer. It's a mystery right now how it came back so fast. Lucas and Mom are now in PICU where he'll be through at least next week. Lucas is having good and bad times right now. Still hard to move him. With so many people coming in, we have signs up alerting them of his brittle bones and stop anyone from touching him before we tell them. We just want to know what's going on and they want his Xrays from the last 4 months ASAP to investigate. God Bless!
UPDATE TUESDAY MORNING:
Lucas was still having trouble when being moved to change him, but not as bad as before the procedure. We were informed that he could possibly come home Wed, but that may have been scratched as they came in and did another Ultrasound of his chest and the fluid has returned in significant amounts in the same area. Dr. Hanna told us the other day that he had removed practically all the fluid, but now they're estimating over 200 cc's has returned. The Cardiology team was informed and just visited Lucas and said it has to be drained again. Now everyone is working to figure out what's wrong and how it came back so fast. He's resting comfortably right now, not smiling much, if any and just waiting for some answers. Mom is very sore in the head, neck and back from the sleeping conditions the last few days. With tax season heating up, Dad can't go and she'll have to hang in there with Lucas. At home she can rest more, but it's not the same in the hospital. God Bless!
UPDATE SUNDAY NIGHT:
We got Lucas to CHOP's ER Saturday at 3 pm and after numerous visits by the ER staff and the Cardiology Doctors and more Xrays and Ultrasounds, it was initially determined that Lucas in fact had fluid around his heart and possibly lungs. We were in the ER until 4:30 Sunday morning when it was determined by Dr. Hanna, Chief of Cardiology Surgery that Lucas could not receive Lasiks(spelling) for the fluid and he must go through a procedure to have a needle put through his chest cavity to his heart and drain the fluid. He was moved to the Cardiac ICU and where the procedure would be done in his room. Dr. Hanna had measured some 500 cc around the heart, this is almost 2 cups. They brought in their Chief of Anesthesia as Lucas's condition posed many concerns with his GVH and brittle bones. They consulted with the other doctors and at 8:00 am he had the procedure done. An hour later Dr. Hanna informed us that Lucas did fine, no internal bleeding, no puncture of his heart and he had removed 520 cc of fluid. He wanted a series of tests done to determine if it was caused by GVHD, an infection, etc. As of tonight, no tests have come back yet. Lucas is resting comfortably, very subdued, in the Seashore House 4th floor where he spent 3 weeks last year. We were initially told he'd be in for 1-2 weeks for monitoring, but his vitals were looking good and as long as he can tolerate his feeds, he could be home later this week. They weighed him in bed and it showed 64 pounds, down from 69 and down from 79 last year, but weren't not to confident in that reading. They'll try tomorrow. Mom and Dad got about 1-2 hours sleep, but we're anxious to find out what caused this and chances of it happening again. We lowered his steroids and his skin rashes flared up, but tonight his skin is looking OK. We've always wondered if he had GVH somewhere else other than his skin. Mom was very persistent in requesting an Ultrasound as we just didn't think all his gasping and choking for air was just from moving him. Yes, moving him caused him to gasp and his lungs are not good, but is was explained to us that Lucas has practically no room for his heart to move and with all the fluid there, it was collapsing his lung, thus causing him not to breathe. His chest cavity even after the drainage is still very jam packed. He's been very distended the last few weeks and for the first time, we can see his ribs. The fluid was causing all the complications he had and we're very optimistic that things will look up for Lucas as he recovers. Thank you again for the prayers and concern for Lucas. It helps carry us through these dark days for him. God Bless!
Lucas had an ultrasound Friday at Monmouth Medical as he was having trouble breathing, etc. The pediatrician called this morning to inform us that Lucas as Pericardial Effusion which is fluid around the heart due to possibly his collapsed lung. Dr. Magnusson just called us and said to get to the CHOP ER ASAP. He has to have more testing done and be monitored to figure out what to do, but we also have to coordinate with Oncology and cover all the bases before the procedure. It's been an unsettling week for Lucas and we believe we have an answer. He could be in hospital for 7-14 days. Thank you for checking in on Lucas!
THANK YOU FOR CHECKING IN ON LUCAS!
The last several days have been brutal for Lucas. His breathing has worsen. Moving him with oxygen is now necessary. Last Thursday he began gasping when being moved. We called Dr. Zanni on Thursday and he wanted Lucas in for a chest Xray on Friday. We took him over to Monmouth MC and the results didn't show pneumonia, but rather showed that his lungs have very little capacity left and with his scoliosis and bloating from the steroids under his lungs, just turning him or getting him into his chair is a difficult task for him. The oxygen tanks were going fast and we got approval and immediate delivery for a concentrator. It has made things easier and faster to get him oxygen. He's been waking up more during the night and we've been checking in on him more.
Lucas had his Pentamadine IV today at Monmouth. Dr. Fisher checked him out and ordered some additional labs to rule out a few things. She went to Radiology and accessed Lucas's Xrays from last year and Friday. She came back to get both of us and wanted us to see the Xrays together. She showed us Friday's films and we were not prepared for what we saw, which explains a lot of Lucas's issues right now. His left lung is basically no good and his right lung is about 60 percent cut off. When we move him, he's fighting to breath out of one lung. She showed us another child's lungs to see what good lungs look like. They were clear, no clouds. Lucas's were practically covered. We discussed the vicious cycle of steroids to battle his GVHD and what they're doing to his body and bones, but to see his bones with nothing to them and to see his lungs in that condition was not easy. Dr. Fisher said that he has been fighting a very difficult battle all these years and in the 4 years she's been seeing him, he's remarkably hanging in there. But, we're basically out of options. If he gets another pneumonia, she doesn't know how he could breath through it and make it. Lucas's quality of life has always been the most important issue with us. He's struggling right now, however, as tough as it is, he's still laughing one minute at the TV and our silly antics and the next his oxygen level is going down into the 80's. His spirit is unbelievable and each day is a blessing for us to have with him. God Bless!
Sunday, February 14, 2010 9:54 PM EST
THANK YOU FOR CHECKING IN ON LUCAS!
It's been 6 weeks since our last update. We last reported that Lucas got past his pneumonia and partially collapsed lung and had a few breathing issues. Overall, he's been going to school each day when we haven't had a Blizzard and everything else has been reasonably OK for him. His skin is looking pretty good, he's only had a few breathing issues, but nothing that required oxygen, the seizures still occur 2-3 a day and he's been pretty regular with BM's and urinating. He had his Pamidrinate in Philly last month, however, he was gasping and didn't look too good so we asked that they give him something to soothe his stomach and since he hadn't urinated all day, we ended up staying longer and was about the catheterize him when he finally went. They weighed him in bed and it showed 73 pounds, but we thought it was wrong. He was weighed in school the other day as they still have his wheelchairs weight and it showed he was only 69 pounds. He was usually around 77 pounds and bloated to 80 last year when the edema in his legs was bad. We had to contact the Bone Density nutritionist to alert them the last weight was correct, but that now it was even less to see if they want to do anything with his feedings. It was a long day for him, but he bounced back the next day. He's been doing fine with Pentamidine IV's at Monmouth Med Ctr. It makes a big difference for him staying local for that procedure. Not much more to say other than we're happy with how he's doing this winter. We've had to add 3 nurses to his schedule and he now has 5 nurses a week and sometimes 6 a week, but he's still getting 8 hours a day. Some days the nurses come less if they have other obligations.
We can't tell Lucas, but unfortunately, a very dear classmate of his lost her life unexpectedly the other week. She always lit up when Lucas came to school and was always talking to him and us when there was a class function. She was very friendly to him, but we can't tell him. We have to keep him upbeat and hope that he doesn't feel any depression with anything that goes on. Don't know if he can understand that she's not coming back to school, but we can't take a chance these days on how he'll react, especially with going back to school. We've had too many friends and families since back in Minnesota who have lost their children and for us we never forget, often think of their families and want them to know we'll never forget them and their children. In the past few weeks 3 young children passed away after struggling with MLD. They are now free of the suffering that this disease causes. Each day with Lucas has a degree of depression for us and when Samantha had her life threatening ordeal with the spinal tumor, we battled to stay positive for Lucas and Abby. We know with Lucas, we must keep him mentally stimulated and busy, whether with cartoons or our antics. There is never a quiet, restful day in our lives. When he starts to wake 5:30 or so in the morning and you walk in and see his blue eyes watching you come in, you're extremely grateful that he made it through the night and is here for another day. Another day for his tired, painful body to fight through and get to the next morning.
Samantha had her visit a few weeks ago with the neurosurgeon Dr. McCormick. He went over her most recent MRI's and showed us the spinal cord where the tumor was. We had thought that the indentation made by the tumor on the spinal cord would bounce back, but he said it could not. The spinal cord is like plastic and will not bounce back. He said when she came to see him in July with a gloomy prognosis, it was as if she had a tractor trailer on her foot, Dr. McCormick came along and delicately removed the tractor trailer, but she was left to deal with the damage remaining. He indicated for the first time to us that the removal of the tumor was a much more difficult surgery than the MRI's had indicated. He confessed that he had some concern during the procedure and was grateful when she was moving her fingers and toes. The left side of her head is numb and the loss of the nerve is causing her to feel like something is pulling her scalp. She still gets numbness when looking down and headaches once in a while, but he said that could last for a long time and she'll have to live with it. He knows the demands Lucas has put on her, but he felt she has been doing more things than he could have hoped for after only 6 months post surgery.
Abby has been doing fine recently. She made the honor roll and is doing well in dance. School is going well with her and she has learned to go with the flow with things. We try to talk to her about things and reiterate that she has been a terrific sister to Lucas and someday she'll see that and that she'll see how difficult her life has been with sacrifices we have all made for Lucas. A priceless lesson during difficult family times.
This has been an awful winter with 3 blizzards and several Nor'easters, but with Dave busy with tax season and trying to keep up, we're looking forward to March when the weather should hopefully get better. We want to thank the Carrano and Nappi families for digging us out of the snowstorms and allowing us to concentrate on caring for Lucas. God Bless!
Sunday, January 3, 2010 7:21 PM CST
THANK YOU FOR CHECKING IN LUCAS!
Lucas has again gotten past a bout of pneumonia. The Augmetin was causing diarrhea and gagging so we switched to Zythromax. He had his Pentamadine IV at Monmouth the other week and Dr. Fisher had his Xrays reviewed by the Radiologist and it was determined that the pneumonia was in his lower left lung and that it might be partially collapsed. She advised finishing the antibiotics and believing that his lung would re-inflate by itself. While examining Lucas, he belted out a few deep laughs from watching the TV. She said his lungs have probably been hanging in there so well over the years because of his ability to laugh. She could see how deep he breathes when he's laughing and she knows that when Lucas is doing fine that he laughs a lot. It's terrific exercise for the lungs to laugh. Within a few days, he was breathing better and we were able to stop giving him oxygen when we moved him or changed him. The big difference this year is that we have the oxygen tanks and nebulizer machine at home and the Pulsox Machine to measure his vital signs along with the nursing to keep a close eye on him by listening to his lungs each day.
The holidays and New Year were better with him getting back to somewhat normal. We have noticed that he does not like anything new, for instance, some of the DVD's we got him for Christmas haven't done so well and he's gotten aggravated in the first 5 minutes. We're learning that Lucas doesn't like change and we must keep the routine and stay with the old school shows that he knows and likes. Last night he gagged and it took him what seemed like a good 10 seconds to catch his breath again. He is a little congested and snoring at night, but there is really nothing we can do to help as because of his high blood pressure he can not be on decongestants. The best we can do is saline mist and vicks. He starts school again this week and we'll try to get him there each day.
Samantha has been having more good days than bad days as we finally get back to see Dr. McCormick this Thursday. The cold weather has been tough for her with aching in her head and left side. She still has days when she does too much with Lucas and she starts feeling tightness in her head and neck. It's been 5 months since her surgery and she's still bouncing back. She had a dexascan the other week to measure her bone density and it came back that she has Osteopina. The doctor was concerned and had her start taking Fosomax and has upped her calcium and vitamin D intake. She knew this would happen some day as it runs in her family, but she was hoping it wouldn't come so soon. As the year came to an end, she was still extremely grateful for the outcome of her surgery and that she got through it without any major setbacks.
Abigail and Dad are doing OK with Abby going back to school this week. Last tax season was brutal for our family with Lucas in hospital from Feb to mid-April and we had to weigh our options to make our lives less stressful, but yet earn a living. The idea we came up with was to work out of a CPA friend's office in Tinton Falls and from home. The goal is to work 3 days a week there and the rest at home. Each year Dave downsizes his workload to devote more and more time to Lucas and after Samantha's health problems, something had to give this year. We hope that getting some extra help will make a difference, but it has been a long road the last 8 years working through the long winters and the mental and time demands of this profession. We have see if this move will work.
We want to thank all our family, friends and community who helped make this holiday season more special for us. We're simply humbled that dad's clients, friends and community still drop off gifts, food and money to help us get by. We just don't have the time to send so many thank you's, but hope Lucas's webpage serves as our sign of how thankful we are. Gob Bless!
Friday, December 18, 2009 10:00 PM EST
UPDATE FRIDAY DECEMBER 18:
Lucas has pneumonia, but he's home right now and so far not going into hospital.
Lucas had his Botox injections on Tuesday in Newark. Dr. Armento was concerned with the breathing issues Lucas has been having, but felt since they don't move him while he is under anesthesia it should be OK. After he was done, Lucas was bleeding heavily from a few of the injection sites. Dr. Armento wanted bloodwork done immediately to check his platelets. He also felt since we were there, he ordered chest Xrays. The bloodwork showed his white count was 2.5, but his platelets were fine. The radiologist diagnosed Pneumonia and we went to the pediatrician Dr. Lipp who was not 100 ure if it was and he got Lucas into Dr. Zanni, Pulmonologist, today. We saw Dr. Zambreano who broke the news that Lucas has pneumonia. He said he could hear the crackling sounds and he showed us on the Xray in his left lung the pneumonia. He was a very thorough doctor and concluded that Lucas poses many complications and problems with treatment. He said since he doesn't move and his bones are so brittle, prescribing one of the various vibrating chest machines to help move the mucus would pose a problem with potential fractures. We told him when he had aspiration pneumonia early this year, they tried some equipment on Lucas, but they were too strong and we we felt they could do more harm than good. He recommended some chest PT but was concerned that could also pose a problem. He would normally advise us to put Lucas in the hospital, but decided to send him home with the antibiotic Augmentin and see how things go although he would have preferred Lucas to have IV antibiotics in the hospital. Now when we turn him either side his Oxygen goes down to 82-84 and we started hooking him up to the oxygen tank which is helping a little when we move him. He's had a bad night so far and we're staying in the room with him. The doctor also told us not to give him Valium as that slows his breathing down. When he took notes and asked questions, he told us "I can't believe Lucas has not been to see us in the last 7 years." Dr. Zanni saw him at Monmouth MC in March and said the same thing. With no immune system and all the issues he's confronted with he was just taken back a bit that he's made it so far. He agrees that the scoliosis is playing some part in this now, but he was really concerned that this is the 2nd time in 9 months Lucas has had pneumonia and that's not good. As we have found out in the past, it's very difficult being proactive with Lucas since what works for most people will only cause some other issues for Lucas.
It's been a tough week for him and we're just taking hour by hour and hope he'll pull through again and not end up in the hospital at Christmas time. Godbless Lucas and all the MLD kids and their families!
Update, Sunday, Dec 13:
For the last several days, moving Lucas has become very difficult and causing him severe distress. His oxygen levels which are normally 96-97 when in bed, drop down to 80 when we move him on his left side. In changing him, we normally roll him to his left due his dislocated hip and trying to avoid turning him to his right side, but we've had to move him to his right side starting today. As soon as we would move him, he would start gasping and struggling to breathe. It could be his scoliosis is worsening and causing his internal organs to shift thus putting pressure on his lungs. Moving him to his right is the lesser of 2 evils right now, but he seems to respond well while in his wheelchair. This is no longer a one person job and it requires 2 people to move him. We're always here with the nurses and may step out for a little bit to take Abby to dance or a short errand, but we have make sure one of us is always here to help out. Lucas has Botox with Dr. Armento in Newark on Tuesday and he really needs the dose and can't miss it. We'll see what the Sedation Dept. nurses tell us to do on Monday. For right now, Lucas can be laughing at a cartoon or something silly, but in a just a moment his breathing can deteriorate and he's struggling. We're contemplating contacting his local pediatric pulminary doctor to see if he can come up with anything. God Bless!
PICTURE OF LUCAS AT THE LUSTY LOBSTER SEAFOOD STORE IN HIGHLANDS, NJ. WE STOPPED OVER AND THEY WERE VERY FRIENDLY WITH LUCAS AND GAVE HIM A TEE SHIRT!
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has been going to Monmouth Medical Center every 4 weeks for his Pentamadine IV and aside for a minor infection at the IV sight several weeks ago, it's being working out well. We're local and the Day Stay staff and Dr. Fisher are very good with Lucas. We haven't had to go to CHOP Oncology for several weeks now and they informed us to stay local and just keep in touch with them and have his labs sent over. Lucas goes back to Monmouth Tuesday. We had a visit to CHOP with Dr. Barsky of Bone Health several weeks ago and she informed us that the Dexascan showed that his bones haven't gotten any stronger from the Pamindrinate and we're going back in a few months for another infusion. The steroids are probably negating any benefit, but we'll see what happens next time. Every so often he'll tighten up and scream in pain if he is moved wrong, so his bones and muscles are still an issue.
Lucas hasn't gotten his swine flu shot yet as we were told the most likely place would be our local high school where Lucas is considered an-out-district student. We found out our pharmacy is giving them out but it's for 18 and older so we are trying to get a doctors note for an exception. Somehow Lucas has managed for the last 7 years with no immune system, so we're just staying out of public places, staying home, checking with the school about his classmates and using some common sense, which seems to be in short supply these days. We changed his Neurontin from liquid to capsules, as we have been using "process of elimination" to see what could be causing him to have 8-10 Bowel Movements a day. We tried a few formulas, switched the timing of his feedings, etc., but nothing worked. We guessed the neurontin could be it and so far the capsules have cut him back to about 5-6 a day, still not great, but better. The only problem with the capsules is that we have to open up 3 capsules and dump out the powder and add water, but it takes a bit of time to get the mixture just right. This is done 3 times a day and we're compounding 4 times a day his calcium.
Lucas hasn't had any major urine issues of late, but each day we time the frequency between his urinating and feel his abdomen to see if he's distended. He's been going to school each day and a few times over the last few weeks, they called us within a half hour of him being in school to come pick him up due to a BM. We appreciate when they can notice it as we're able to get him right home and changed ASAP. His bottom seems to react very well to Balmex lately in healing any soreness. Lucas has his Botox injections next month.
We have a small prayer card that says:
"LUKE" - "Light" - Be strong and of a good courage; be not afraid, neither be thou dismayed; for the Lord Thy God is with thee Whithersoever Thou Goest. Joshua 1-9. This describes his life over the last 8 years, a fighter.
We had a new nurse come today to go over everything with our scheduled nurse. We still have 3 nurses coming different days for 8 hours, but with winter coming and logistics changing, we need to keep another nurse in the loop for filling in. The hours have been approved to Dec 31 and we'll try again at that time to keep it going.
Samantha has been attending PT and slowly recovering. Her appetite still isn't real good and and her weight is still on the low side. She lost a lot of weight after her diagnosis. The latest MRI showed that the tumor is totally gone which was terrific news and Dr. McCormack still wants annual MRI's to monitor her spinal cord. Her left side is still a little weaker than her right side and we hope in due time with PT that it will get stronger. With the cold moving in, some days are a lot worse than others. Her nerves sometimes flare up and cause aches and pain and stiffness. But she's now driving and taking over most of Lucas's care as back in July. That's contributing to her having some bad days as she doesn't know when she's done too much.
Abby has been doing well with all that's gone on the last several months. She's now 12 and so far this year school and friends have been going well and her new dance school is working out well too. She looks forward to dance and is still doing Girl Scouts. She has a tryout for the county performing artist program and we are trying to get her involved with some community volunteer programs.
We have never looked forward to winter and this one coming up is no exception. Except for Lucas, we all had a small bout of feeling yucky a few weeks ago, but fortunately Lucas didn't catch anything. We keep up with the MLD websites and hope and pray that the families and children can do the best they can each day as it comes. We admire all the families and feel a heartfelt pain when we learn of a new child being diagnosed. We have each other to communicate with and find strength and share ideas. Some of the websites are very touching and many times we find some parents have a way with words and admire them for speaking from the heart and putting down the facts of their's and their cildrens daily life. We think often of our friends who have lost their children and hope only the best for them.
We hope everyone has a Happy Thanksgiving! God Bless!
Thursday, October 15, 2009 9:15 PM CDT
THANK YOU FOR CHECKING IN ON OUR FAMILY!
We will start with Samantha. She still has days of pain and fatigue. She's been going to physical therapy for about 3 weeks now. Friends have been helping bring her to her morning appointment while Dave gets Lucas ready and brings him to school. After dropping Lucas off, he shoots over and picks up Samantha and goes home and shortly heads back for Lucas. Our PT informed Samantha that her whole left side is very weak and that must be worked on, but it will get stronger in time. She's now able to slightly move her head side to side, but no where near prior to surgery. The back 1/3 of her head is still numb. She still gets numbness in her left arm and legs. She had an MRI the other day with contrast and we're to bring the CD to Dr. McCormick for another followup visit. She's been gradually helping with Lucas the last few weeks with changing him and giving him some meds. She's still not pushing his wheelchair and she is going to start driving the car around town to get used to it again. It's been 3 months since she was diagnosed and each day is a slow steady progress. We've heard over the last few months from people who know someone who had a tumor in the same general location as hers and some did OK and it took a long time for recovery and some others came out of the OR paralyzed. We feel very fortunate with the outcome and have the patience to wait for her recovery.
Lucas has been going to school each day and more and more days we pick him up they tell us he was moaning and not in great spirits. He usually has a bad BM when we get him home and we've started putting a chuck be between him and his lift netting. That's probably why he's not so happy and in a lot of discomfort. We have been trying to figure out what has been bothering Lucas the last several weeks. His breathing is erratic at times, but not enough to require us to hook up the oxygen tank. When we turn him to change him, he grunts and moans in pain. A few weeks ago he had his Pentamadine IV at Monmouth MC and Dr. Fisher examined him and his lungs seemed fine and the Pulsox gave normal readings but he seemed in pain. The IV in his left hand got very irritated, not infected, and it's been sore and looking ugly since then. We've bandaged it and it's a bit better today. We met with Dr. Magnusson at CHOP last week and went over all of Lucas's problems since he last saw him. For his skin, he recommended with see the Dermatologist at CHOP and get their input. We also told him that we've catheterized Lucas a few times recently and his belly has been distended a few times. We keep track of every BM and pee and sometimes record the weight to see how he's going. He's concerned that the muscle in the bladder is not receiving the message from his brain to go. There is medicine to help with that, but he's not thrilled with adding another medication right now. So he's made an appointment with Dr. Karr of Urology this coming Monday.
The other appointment was with Dr. Barsky of Bone Health and Maria her nutritionist. Dr. Barsky read us the results of Lucas's Dexascan from last month and compared it to the one he had last year before starting the Pamidrinate IV for his bones, and unfortunately it does not show any strengthening of his bones. We've even upped his calcium and Vitamin D intake the last several months, but there was no improvement. He's still at risk for more fractures and breaks. Amazingly, we don't think he's had any fractures since last November, but the nurses and we are very gentile in moving him. She wants Lucas back this Monday after his Urology visit for another Pamidrinate IV and repeat the process in a few months. These are long days for Lucas.
Lucas's buttocks has been very sore and red and it's just a constant battle catching him doing a BM or pee and changing him ASAP. We believe school is great for him, gives him a different scenery and change of pace, but since they can't move him or change him, he has to put up without being changed for a few hours and that's a problem. We've weighed our options many times, but feel school is best for him and he'll keep going. Lucas is in his chair only about 5 hours a day. On the weekend, we get him up late morning like school for a few hours and back in bed and then back up 4:30 for another few hours and then it's back to bed until the next day. He's very weak and we're seeing him unable to sit like he used to. It's been a trying year for Lucas and Samantha, but we manage. Having the nursing has helped out drastically and we thanked Dr. Barsky last week for fighting for us. Lucas's nursing was just approved for 8 hours a day until December 31.
Abby is now 12 in 7th grade. She's doing very good this year and we're seeing a difference with her school work. We still have to stay on top of things with her, but we feel she's doing better this year considering everything that has been going on with Lucas and Samantha. She's switched dance schools and that has worked out well. With a lot of kids in the neighborhood starting at Markham in 5th grade, she's been walking to and from school each day and playing after school with the kids. That's made a difference with her being distracted from everything. We watch her outside and it's great to see her laughing and having fun.
We want to thank everyone for helping us out financially and for dropping off meals those 2 1/2 months. We're back to cooking and getting into a routine. Lucas got a special gift last Sunday. When we moved in back in 2003, a neighbor gaves us a 15 year-old big screen TV and it stopped working last month. We had to kick it 10 times to turn on. We used that TV in our living room for Lucas to watch videos when he's out of his room. His Make-a-wish Plasma TV in his room has been getting hotter and hotter and it made for a long summer in his room from the heat. He spends so much time in his room, even with the A/C, it's hot and affects his skin and causes him and us to sweat. Dad's Velame brothers (a group of friends from Little Silver who help out families and just recently they helped a local army veteran who lost his legs in Iraq by putting in a handicap accessible bathroom) heard of our TV situation and stopped by last Sunday with a 40" HD TV for Lucas's room. The HD TV is much cooler and we moved his Plasma into the living room where he's now enjoying videos. It's been a big help and we want to thank them for always thinking of Lucas.
There is a lot of talk about health insurance and health care reform. Some people ask us what we think and how we cope. Quite frankly, our health insurance went up 25 percent this year and has climbed well over a $1,000 a month. We're glad we can manage to pay it and we have a terrific case worker who's helped us out. With the limited time we have, both of us work hard together to meet the financial end, but our business also allows for the flexibility to take Lucas to his frequent hospital visits far from/close to home and to drive him to school the other days. It's common when busy to work to 2-3 in the morning. Since July Samantha has been unable to be with Lucas for his visits, however the both of us have always been there for each appt. whether dental, podiatry, all the hospitals, pediatrician, etc. We have the highest/maximum in and out of network deductibles allowed by law and with all the non-insurance items we have for Lucas and Samantha, we somehow manage. The main reason we have been able to manage these last 8 years has been through the generosity of so many people, organizations and a number of Dad's clients. No one cares about tax donations or any of that stuff, they want to help and they give from their heart. We were very humble people before Lucas got sick, but it's amazing how much more you can be humbled. With the fundraiser this past August, that re-instilled how much so many people care about our family. We were told by many not to send out thank you's for the recent wave of help, but we will gradually address that shortly. We must thank people with words and let them know that they have not allowed us to fall through the cracks of being forgotten and watching these bills overcome us. We are working very hard as a family to manage these challenges and we couldn't have done without so much help. We are very grateful and blessed. Lucas's old preschool, Gethsemane Lutheran Church in Keyport, NJ is again holding a spaghetti dinner fundraiser this Saturday the 17th at 5. They have been holding an annual fundraiser since Lucas got sick and everyone is welcome to attend. We thank the church staff for their continued support and love for our family. God Bless!
Wednesday, September 23, 2009 11:00 PM
THANK YOU FOR CHECKING IN ON LUCAS AND SAMANTHA!
It was 7 years ago today that we received Lucas's diagnosis of Metachromatic Leukodystrophy and were told of his grim prognosis and how long he had to live. We were sent off to the Univ of Minnesota to meet with Dr. Krivit and were told the same and that Lucas needed a stem cell tranplant to slow the disease progression and prolong his life. Lucas was doing well until mid January, 2003 when complications from the transplant began to destroy his body. Dr. Krivit told us to take him home much earlier than the normal time they allow kids to go home and spend what time he had left. Seven years later Lucas is still with us at the age of 15. Every day is a struggle and an up hill battle for him, but he's still cognitive and getting through the day. Every day with him is so precious and priceless and when we hear him laugh, we are so grateful and blessed to have him.
Samantha had her visit with Dr. McCormick last week canceled until tomorrow. She hasn't started PT yet until we get Dr. McCormick's orders. She's still keeping her head as still as possible, but each day has shown slow progress. She's been able to get out for a small amount of time, but then she gets very tired. It's just going to be a long process for her to get stronger and it's been very hard for her not being able to help with Lucas. She's still extremely thankful of the outcome from the surgery and just wants to get back on track.
Once again, we want thank everyone from the bottom of our hearts for all the support and love. Thank you for all the meals we've been receiving since mid July and they're still going up to the end of this month. And again, we appreciate all the financial support to help us with both Lucas's and Samantha's medical bills. Abby has started 7th grade and is enjoying school and her teachers. She turned 12 on September 18. God Bless!
Thursday, August 20,2009 9:48 PM CDT
SAMANTHA AND LUCAS UPDATE, AUG 20:
Thank you for checking in on Lucas & Samantha!
We have to begin by thanking everyone for coming out and helping our family last night at McCloone's Rum Runner in Sea Bright. Dad was extremely overwhelmed by all the love, support and financial assistance from everyone who attended plus those who have sent donations and couldn't attend. It's been unbelievable and truly humbling for us. Samantha was unable to attend and was home resting as the recovery is moving along slowly, but she wishes she could have been there. Abby had a great time and was accompanied by her friends Emme, Meagan and Anna. We can't express enough, our gratitude and appreciation to Tim and Beth McCloone for their efforts, time and kindness in organizing and hosting the fundraiser for Samantha and Lucas. Before we forget to mention, we want to thank Eddie "The Doughnut/Bagel Man" and Michele Carrano for working with Tim and Beth in helping with Wednesday evenings event and Tim's band the The Shirley's and the staff at the restaurant for giving their time and those who worked on the raffles and putting the baskets together. For those of dear friends and MLD families from outside NJ, Tim and Beth are the founders of Holiday Express, a non-profit organization that plays Holiday Music for various organizations, schools, etc. who need help and good cheer during the holidays in addition to providing financial support and gifts to many needy people. They're also involved with helping many other organizations in Monmouth County and NJ with charitable support. It took unfortunate circumstances a few years on how our paths crossed. There son Jack, who's been courageously fighting Leukemia each day for the last few years, was diagnosed the year he was in Abby's class. That started the bond we've forged as our children have been coping and dealing with these crummy diseases. They directed the meals families in town were providing them, our way in the winter months. When word got around about Samantha's diagnosis, our town jumped into action with meals and support. Our family friends Karen Scharrmann and Doug Glassmacher with the website help of John Pouso, got the meals going in late July and they're booked out until late September. It has helped tremendously and one less thing to have to get to with Sam slowly getting back and Lucas hanging in there. Tim and Beth wanted to help with what they do best, having a fundraiser to help with our medical bills. There's always a special bond with families who have children with very serious illnesses and plus they're going one step further with Lucas. Lucas loves Elvis Pressley and his music (from his favorite Lilo and Stitch movies) and Tim is lining up a Elvis impersonator whom he's knows would love to come and visit Lucas. When we mention that someday Elvis will walk into his bedroom and sing, he gets extremely excited, so we are looking forward to that day for Lucas. Dad apologizes to any of the people whom he didn't get a chance to talk to last night. It was a busy 4 hours and he tried his best to hold it together and convey to everyone in the room how much our family has appreciated their love and support. He meant it when he said we know we're not going through this ordeal alone and many people are by our side. God Bless all your help!
Samantha has been instructed to not move her neck/head for the next 4 weeks by Dr. McCormick. He wants her to keep it as still as possible, not totally stiff, but to avoid all physical exertion and neck movements as best as she can to help with the healing process. Sam is still having difficult days with fatigue and trying to keep her head up, but each day is progress. Her appetite has improved and she's enjoying her tea and desserts. The last few days her swelling in her lip has gone down, but it's still numb and her swallowing is back to normal. We know it will be several months before she's 100 percent, but she's determined and so thank full with the outcome. The pathology report came back and the tumor was benign/no cancer. She was relieved to learn that Lucas's nursing was re-approved until October 19 for 8 hours a day and we didn't doubt it wouldn't be approved after Dr. McCormick's letter. Sam has been in touch with his nurse practitioner Mary concerning certain issues, expecially her arm where the IV was and where she was tied down for surgery. Mary told her it's probably some trauma from the IV that was put in her artery in case a tranfusion was needed and to keep an eye on things til Monday and if it still is very sore and causing pain in her arm, to go to our doctor. Each day since her being home has been better than the one before and she's still so grateful that she made it through without any major problems. The left side of head is numb and her left eye feels tired, all the result of losing her C-2 nerve, but she feels this was a small price to pay for the positive outcome. She didn't have to see Dr. McCormick this week and he wants to see her Sept 17 where he will discuss how things are going and future MRI's and Physical Therapy.
Lucas had his regular scheduled Botox injections with Dr. Armento in Newark on Tuesday. As, usual, Lucas did great and woke right up from anesthesia in 30 minutes and we were on our way home. His skin has been looking good, except for his eye lids and ears. We have to cream them 3-4 times a day to keep up with the dryness. He rubs his eyes a lot and we try to stop him as much as we can. Friday is his last day of summer school and he returns the same day as all other schools in September. He's got a few appointments at CHOP next month and we'll be able to see if the Pamindrinate has helped strengthen his bones. CHOP has told us that we can stay at Monmouth Med Ctr for his next Pentamidine IV and they can forward his bloodwork to BMT. He's hanging in there with the heat and humidity and the cooler weather of the fall is almost here. Once again, thank you for your help, prayers and support and God Bless!
Thank you for checking in!
Samantha is slowly and steadily recovering since coming home Monday. Her neck is very sore and stiff, but she's trying to move it each day to try and loosen it up. The back left side of her head is numb and she's trying to get used to that different sensation back there. She's sitting up more and is able to get around the house more on her own. Her appetite is still not back, but the last few days she's gradually eaten a bit more each time. The numbing and tingling she is feeling in other parts of her body is a normal post-surgery feeling to have per the visiting nurse who is now stopping by every couple days for a while. She's just very glad to be home and making progress. The next visit with Dr. McCormick is not until September 17 in North Jersey and she'll have had an MRI of her spinal cord by then for him to review. She'll have to have future MRI's to monitor if any of the tumor has grown back. Right now the game plan is for her to rest and take it slowly and let taking care Lucas (and Abby) up to David and the nurses. It's been almost a week since the surgery and we have a lot to reflect on and be grateful for.
Lucas has been going to school each day and has his Botox with Dr. Armento in Newark next Tuesday. He's been very restless and tired this past week and we think the high humidity and heat that has settled in, even with the air conditioning is making him tired. The seizures continue. He wakes up 2-3 times a night and we've been giving him Valium to settle him back to sleep, but the last few days it hasn't worked. Today was the first time we sat outside with him in several weeks as it cooled off a bit. Overall, he's been pretty stable and his skin has been looking good.
Once, again we want to thank everyone for all the meals, prayers, financial support, gifts, cards, postings and emails. Our family, neighbors and friends, and our community have been so supportive of our family through this ordeal. We thank everyone for keeping Abby busy these past few weeks. She's been enjoying playing with friends and neighbors. Tim and Beth McCloone are hosting a fundraiser to help with our medical expenses at their Rum Runner Restaurant in Sea Bright, Wed, August 19 around 7 pm. Right now Dave and Abby are planning to attend and Samantha will see next week if she's up to going. It has been a very tiring and stressful several weeks, but we're determined to make it through as best we can. God Bless!
Monday, August 10, 2009 10:00 PM EDT
UPDATE MONDAY, AUG 10:
Samantha was discharged today at 4. The ride home wasn't that bad with traffic and bumps for her. She's very sore and getting numbness in her leg and arm and the back half of her head is numb. The points on her head where the Halo was screwed into are very sore. She's managed a couple times on her own to get to the bathroom, but overall she's glad to be home and Lucas was extremely vocal when he saw her. Abby is helping Dad with both mom and Lucas's meds and taking care of them. Mom has to go back to NYC in 2 weeks for a followup visit with Dr. McCormick and then for several MRI's to see if any of the tumor was left behind. The pathology report has not come back yet. Thank you for all the support and prayers. God Bless!
UPDATE SAT, AUG 8:
We arrived in the Bronx, NY at Columbia Presbyterian Hospital at 5:15 am. Samantha was very nervous, confident, but very concerned. She was met by Dr. McCormick, then his assistant then 2 anesthesiologists. Her surgery started at 7:30 and lasted to 1:00 pm. Dr. McCormick came out to tell Dave and her parents that the surgery went as well as we could have hoped for. The position of the tumor was about what he had estimated and no arteries or bones had to be removed. No fusing. He said she did terrific and he said it's his best opinion that he removed all the tumor, but that he can't be certain and only several MRI's in the next year will tell. He said for the location, it was one of the largest tumors he has seen, but it is not cancerous. He said the surgery took more time than he estimated, about 1 hour 15 minutes more because the tumor was so hard. It was not easy to get to and he said it was as hard as a rock. He had to scrape and scrape to make sure he removed all that seemed visible to him. He said this was a big case, but Samantha came through just fine. Depending on her will power and desire to go home, it she's up to it, she may go home Sunday or at least Monday morning. When we saw her in post-op she was vey groggy, but aware of her surroundings and extraordinary happy to move toes and her fingers. She was just so glad it was over and done with. She was pushing her morphine button to release more medication as the pain was severe, but she just seemed so excited. She went into surgery thinking about Lucas's courage and ability to deal with excessive pain and it gave her the boost to get through this. She just focused on being strong for Lucas and Abby and getting back to caring for them. It was a very, very long 2 1/2 weeks, but Dr. McCormick squezzed her in and did what he said he would do. His nurse practitioner told Samantha Thursday that he does the cases no one else can attempt and for those people who aren't given much hope. In pre-op, the surgical team asked questions about children and they knew that she cared for an MLD child. We could see there concern and felt the vibes that this case would work out no matter what. She actually by-passed ICU and went to the main floor. She's got a room overlooking the GW Bridge, although she can't turn to see it. Hopefully she'll get up later on Saturday and can look over the Hudson River and the bridge. It's been a tiring day, but the outcome was what we and everyone had prayed for. We can't come up with the words to thank everyone for your help and prayers and we know everyone felt our pain and despair the last few weeks. Samantha is fighter just like Lucas and we're just extremely grateful that someday we'll be back together caring for him everyday. God Bless!
SAMANTHA UPDATE THURSDAY, AUGUST 6:
Samantha's surgery is scheduled for tomorrow at 9 am. After some problems with the EKG test, Samantha needed a followup test after her EKG came back abnormal. Some issues came up during the 4 hour nuclear stress test, but she was given clearance for surgery yesterday on Wed. She'll need more cardiovascular tests down the road to address what these tests found. She's nervous, but managing the best she can with all the messages, calls and concern from everyone. She's been overwhelmed with all the prayers, emails and postings for the surgery to be successful. The nurse practitioner called this morning to confirm everything and convey that she's in the best hands possible with Dr. McCormick. We will post more information on Saturday night or Sunday a.m. on how everything went on Friday. We just can't say enough about the efforts to help us at this time from donations, meals and offers to help in any capacity. We've been informed that Tim and Beth McCloone from town are holding a fundraiser event on August 19 at their Rum Runner Restaurant in Sea Bright to help with the both Lucas's and Mom's medical expenses. We are very grateful and blessed with so many terrific friends and family who have done so much to help us through this ordeal. Lucas is doing OK and his last lab work showed that we have to put him back on Fluconazole (which damages his liver) even though his liver enzymes are very high, but otherwise he's doing fine and Abby has been kept busy and will be a big help while we're at hospital. We're thinking positive and feel confident that things will work out fine tomorrow. Thank you for all the love and support for our family. God Bless!
SAMANTHA UPDATE WED, JULY 27:
Before, we update, we have been humbled and touched with all the support and help for our family from our community and friends. We truly appreciate the meals, prayers and love for Samantha and Lucas and our family.
Right now the surgery has been scheduled for August 7, Friday at Columbia Presbyterian in New York. It was originally set for August 18, but Dr. McCormick wanted to operate on the first available OR time and he managed to get next Friday. After meeting with Dr. McCormick last Thursday, he stressed that removing the tumor is the only option. He was taken back when we said our son has Metachromatic Leukodystrophy and all the problems he has. He said that it is a very risky procedure with potentially catastrophic results, but that this is all he does and he's well experienced with these difficult cases. He also informed us that in his opinion based on the MRI's and it's location in the spine (C-1 and C-2), that he does not believe that he'll have to fuse the bones and that it appears that the main artery has not been compromised by the tumor. He is very certain that the nerve coming out of the C-2 to the skull has to be removed and this will cause permanent numbness to the back 1/4 of her head. He stressed that Samantha could not have suspected all her pain was being caused by this large tumor due to all the demands of caring for Lucas. He stated that nothing is 100�ntil he's in there, but we feel he has put a few things in perspective for Samantha and overall after meeting with Dr. McCormick she feels a bit more confident in his abilities for everything to work out. He did not discuss recovery time and advised us that he will address that after surgery. He said that to him, this is a priority case in that he wants her back to caring for Lucas. Right now there are a few pre-op tests to have done and we have to be at the hospital at 6 a.m. The stress of everything has been difficult for Samantha and it is complicated even further for her not being able to help with Lucas, but Dad and the nurses are taking over. She can't drive and must be very careful to not make things worse.
Lucas has several procedures coming up with his Pentamadine IV on Wednesday at Monmouth (CHOP made the switch for us) and Botox at Beth Israel in Newark on August 18. His Pamidrinate IV is tentatively schedule at CHOP later next month. Lucas has been going to school each day and is now house bound with the true summer weather here. Lucas's last blood work showed his white blood count was very low and his liver enzymes very high. Oncology advised us to stop the Fluconazole and keep his steroids the same. So far his scalp isn't looking too bad and his skin, except for his bottom, has been looking OK. His seizures have been increasing and with a few he's really zones out.
Right now we're doing our best to keep Abby busy and she's been a big help with Dad in positioning Lucas and getting supplies, etc. Samantha has been resting a lot and avoiding all activities. She has moments of extreme stress and Lucas has her concerned. She's thinking positive since meeting with Dr. McCormick, but knows this is a tough procedure and can't help but think on occasion if any neurological problems could come from this procedure. We haven't cooked in a week and appreciate everyone's dropping off food and coordination by our friends organizing the meals. Dad has not been able to get much work done as the days have been long with Samantha and Lucas. Our nurses are here for 8 hours right now and we are trying to get it raised to 12 hours a day for the next 3-4 months.
We are trying to work out the logistics of when Mom is in hospital, but we have time and will figure something out by next week. God Bless!
UPDATE: We have to let everyone know of the news Samantha received yesterday. On Monday, she had an MRI as requested by Dr. Fox her Physiatrist. She's been complaining of numbness in legs and left arm, headaches for over a year. She figured it had to do with the physical demands of taking care of Lucas. The results were immediately conveyed to the doctor and Samantha wasn't even home yet when he called us to inform her that they showed a very large tumor around the C-1 and C-2 of her spinal cord. That was emotional in and of itself. He acted very fast to get her in to see a Neurosurgeon, Dr. Olson who works locally and out of the Columbia-Presbyterian Hospital in Manhattan. She was his only appointment after performing surgery. After examining her, he sat us down and told us that the tumor has been growing for some time now and it's either a meningioma or dumbbell schwannoma and is likely benign. However, the problem is that it has grown into the spinal cord and may be infringing on the brain stem and wrapped around major arteries. It's over 4 centimeters long. It's located in a very difficult location where only few surgeons have the experience to work and he recommended a specialist he works with in New York who specializes on spinal cord surgeries. It must be taken out immediately and he explained what they'll have to do. It is a very risky procedure and one of the main arteries may have to be permanently clamped off. He was very blunt in what could happen if the surgery is not successful, using terms like ventilator-dependence, quadriplegia, etc. He also explained that they'll have to remove bone and fuse her spine. Most likely she will have to live with numbing in her head, unable to turn her head to the left and the loss of a main artery to her lower extremities. Possibly unable to drive. He said it's a very major and risky surgery and must be done immediately. Her immediate concern was Lucas and Abby and if she'll never be able to move Lucas, what that could do to our lives and transporting and caring for him. The risk of her becoming paralyzed from the head down is present and this is very hard to digest right now. Right now she has to where a neck brace to immobilize it so that no further damage is done. We're relying on Lucas and how he has survived and continued to live with tremendous adversity the last several years and it gives her strength. We're trying to keep things normal right now, but she will overcome this and hopefully in 6 months it will be behind us.
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas had his CHOP visit on June 23. His blood counts weren't too good and were still in discussion with CHOP as to options. His white count has been very low at 2.7 and his liver enzymes are getting them very concerned as they are high. Including being on steroids for way too long, Lucas has also been on Fluconazole (fungal med) for too long. We have been trying to taper that down as the side effects of being on it too long is liver damage and his liver counts are not good. As we lowered the Fluconazole, his head has gotten much drier and his skin has more blotchy patches. We have been well aware of the long term damage these meds could do, but Lucas has never had a choice. During the visit, Lucas was to receive his Pentamadine IV, however, he was stuck 8 times as 3 IV nurses tried to access a good vein and each time it basically exploded in each of his arms when they tried to draw blood. A decision was made to access a vein in his foot, although a good place for shorter IV procedures, it's not recommended too often due to the risk of blood clots. We don't know what to do when he goes back in for Pamidronate IV for his bones. That's about a 5 hour IV and we don't think it can be accessed in his legs. We'll cross that bridge in a few weeks. Basically it is the steroids causing this to happen and when they put the ultraviolet light under his arms, we can see there's very slim pickings to access. Needless to say, a 2 hour procedure took 5 hours.
Lucas's skin and scalp continue to be a daily battle and constant creaming and care is needed. His bones have been hanging in there recently, although an occasional movement jars his body and he'll tighten up and turn red. It could be his hips, leg, who knows. He truly handles the pain and annoyance of it all very well. Lucas has been to the dentist and had his normal house call podiatry visit by Dr. Connors. Strangely enough, Dr. Connors said aside from stopping over for Lucas, he's had 1 other house call in his career and it was to the kid who lived in our house before us.
Lucas has been going to school almost every day over the last few months. Summer sessions started last week for Lucas. We have been getting Lucas outside quite often this summer with the cooler than normal weather. Aside from all the rain, we were still able to sit in the garage with him to watch videos and he truly enjoys it. We even took him to Ikea in Elizabeth this past weekend and he enjoyed it. It's only 45 minutes from home and he just loves cruising in the store and Dad eating a double order of Swedish Meatballs. We've been to the boardwalk in Long Branch several times and to Sandy Hook. He can't go to on the regular boardwalk, only the section with concrete pavers. We must admit that we have been getting him outside much more as long as the heat/humidity aren't bad. We just want him to be out of his room as much as possible. Our nursing was extended until mid August. We have been bringing the nurses on all the local trips.
Mom and Abby attended the MLD conference in King of Prussia, PA the other weekend. That was the weekend that Lucas had a rough go at CHOP and we didn't feel another 4 hour round trip would be good for him within 3 days. He was very tired after that visit and his arms were severely bruised and black from the needle sticks. Abby had a great time at the hotel with her friends Riley and Madison (whose little sisters both have MLD)and Mom enjoyed sharing and spending time with the other families and talking with the doctors. She reads all the websites of everyone who attended and it was nice to meet some of the other families she hadn't met before.
As the summer goes on, we'll take advantage of the weather and keep Lucas outdoors before the mosquitoes come out and hotter days come. Abby has been doing performing arts at Red Bank High School and helping the neighborhood mom's out as a mother's helper. As she gets older, the teen years are kicking in, but she doesn't bring up about Lucas getting all our attention anymore. Certain aspects are getting better with her dealing with Lucas and she helps out with a little bit more each day. We see her sometimes struggling to try and fit in with kids her own age and the times of finding out that she's not invited to something or just not included with something and it hurts her. But we try to instill in her that the lessons Lucas has taught her and what she has seen each day of his life will make her a better and more caring person in the long run. Many people are clueless to what she has had to deal with and has seen with Lucas, but as many MLD families know, we never expect people to understand Lucas's life, or even ours and Abby's life in coping each and every day. We survive with family, friends and huge amounts of laughter. God Bless!
Sunday, June 14, 2009 8:26 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has been going to school everyday for some time now. Unfortunately, just about everyday we bring him home he has a BM. He seems to have one each day around noon, as is the case on the weekends, but it's the only time we can take him to school and we do our best to get him home and changed ASAP. He still has days with 6-8 BMs and they still don't know what's causing it. We changed the timing and amounts of his feedings, we've added some ProBiotic drops and nothing seems to be changing how much he goes. His GVHD has been flaring up and we've added an extra shower and started shampooing him in bed. We use olive oil on his head and are constantly creaming him to stay on top of it.
Since we stopped giving Lucas Bactrim, we've been going to CHOP every 4 weeks for his Pentamadine IV. One of the idea's they are considering is to do another endoscopy with Lucas as they are not sure if the one he had back in March went deep enough. That's on the table right now. We're again looking into different feeds for Lucas and trying to figure out what he can tolerant or what may even slow down the BM's. He's not getting dehydrated and we haven't had to catherize him in several weeks. It's a real battle keeping his butt smooth and comfortable from the excessive BM's and the fact that he has to wait to be changed until we get him home.
Lucas has been gradually getting tired earlier and earlier in the evenings. He fights to stay awake and watch TV. We try to settle him down around 8:30 with Xanax and he fights it. We still have nursing 7 days a week for 8 hours, but that is up for renewal shortly and we're hoping to keep it going. He has on and off days with pain from us moving him, but we don't think he's had any more breaks. With this time of year being not so hot, we've been taking rides to the farmers market with the nurse and taking him to the boardwalk for some fresh air. We can't take him on the wooden boardwalk as that's too bouncy and he can't take the vibration, but a good part of the Long Branch boardwalk is large granite stones and it's much smoother. We sit in our garage watching videos on an old TV and VCR. He can manage about 2 hours max out there as long as it's not hot. We were given an Elvis Pressley CD, Lucas loves Elvis from Lilo and Stitch and he'll enjoy several songs. We try to get him out of his room and are taking advantage of the not so hot weather, but we know any day now he'll be stuck in the house for the next few months.
Lucas wraps up school this Friday and will be home for 2 weeks. Abby also finishes this Friday. She's finishing 6th grade and also had her dance recital today at Monmouth Univ. She had 6 dances, with 1 solo in honor of Lucas. She made a short speech and dedicated the dance to Lucas and The Stennis Foundation. Mom said she danced beautifully today. We're planning to attend the MLD conference in King of Prussia, outside Philly. Mom and Abby are going for the whole time, and Dad is coming out with Lucas Friday and then going home that night. God Bless!
Wednesday, May 13, 2009 2:21 PM CDT
TODAY IS LUCAS'S 15TH BIRTHDAY!
We celebrated with a party on Saturday and he had a great day. Today Mom took shrimp cocktail to school for Lucas's classroom. He's doing OK right now. His skin is still acting up and dry, but overall, Lucas is going to school each day for 2-2.5 hours and still recovering from the last few months. The nurses are feeling that Lucas is getting back to his old self and pre-Feb 16 days. This is a special day for Lucas to reach this milestone from the dark days of September, 2002. It's also a terrific day for Mom, Dad and Abby to have the opportunity to go in Lucas's room at 7:30 am and wish him a Happy 15th Birthday! God Bless!
Tuesday, April 28, 2009 6:57 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
On Saturday, May 2, there will be a fundraiser walk to benefit the Stennis Foundation at the Norwood Inn and Avon Boardwalk in Avon-by-the-Sea. Check in is at 9:00 and the walk begins at 10:00. Lunch and auction will follow at the Norwood Inn. Registration fee is $25 and includes lunch and t-shirt. Register online at www.stennisfoundation.org. or that morning. Please try to come and help our kids. It's a great opportunity to meet the NJ families and their children dealing with MLD. We'd greatly appreciate it.
The oozing of Lucas's edema stopped Saturday night. It had been leaking after his Botox since last Tuesday. Over the weekend Lucas's GVHD significantly flared up. He was itching and gouged the top of his head from scratching. We took him to CHOP today for his Pentamadine IV and to see the Oncology docs and Dr. Magnusson. Oncology was not happy with all the rashes and flakes and as we suspected, upped his Prednisone/Steroids. Not good news, but Lucas is left with no choice. On one hand trying to strengthen his bones with the Pamindrinate IV and now we're adding to their deterioration with heavy doses of steroids. It's becoming harder and harder to move Lucas without him showing signs of severe pain. His left leg is bothering him again and nothing we can do, except be very carefull.
Lucas went for his IV in the new Oncology infusion room which was brand new since he was last their. We were able to get him a private room. Once the IV started, Lucas started shaking and had spasms. His heart rate went through the roof. The nurses came running in and we believe he was unable to urinate due to the long ride and being in his chair so long and that triggered it. They struggled to catheterize him, but eventually he went. After that his rate came down and he settled down. He kept his head to right and couldn't bring it back to center for about 45 minutes. He was fighting to see the TV but the spasms he was experiencing made it difficult. He settled down and we moved on to Dr. Magnussen's visit. He's recommended that we see another doctor at CHOP's bone density department who's renound for brittle bones and who may be able to help us figure out the direction we may have to take. He was also concerned with his blood pressure which was still very high and will get back to us with a game plan.
Lucas is still going to school for a few hours a day, but his last few days going haven't been his best. He's been quiet and subdued. He only perks up when we show up to get him. He's still having on and off diarrhea and they're still trying to figure out what's causing that. We are going to try and bring Lucas to the walk on Saturday, but we'll have to see how he is that morning. Mom and Abby are planning to be there for the entire walk and Dad will be coming down with Lucas if he's able to. It's been difficult taking Lucas anywhere, including school, with the constant BM's. Since everything started with Lucas's aspiration pneumonia and going into respiratory distress on Feb 16 and being the hospital so much, it's much more comfortable and calmer for Lucas to be home. We've been taking him into the garage to watch VCR movies where at least he can get some fresh air and be out of the sun. Except for the last few days with heat, he's enjoyed that little bit of time out of his room. Through all of Lucas's ordeal from mid Feb to mid April, it was a trying time for our family. Dad managed to get through his busy season, although his toughest one since Lucas getting diagnosed in 2002 with all the time constraints with Lucas, but most of all we were very proud of Abby making the Honor Roll again with all the distractions and disruptions in our family life during this period. God Bless!
Thursday, April 23, 2009 8:31 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Last week a new med was introduced to Lucas in place of Bactrim and the Pentamadine IV, Mepron, at a cost of $820 for a 21 day supply, and it only lasted 4 days. One of the side of effects was problems with the GI system and Lucas went back to 8-9 BM's a day, he began gagging at night and he was sluggish and not happy. We could easily see it was too harsh on him. A call to Dr. Magnusson and we took him off it. For right now, we're not doing anything and are planning to go to CHOP on Tuesday to start the Pentamadine IV's again. They discussed it and decided that Lucas only has to go 1 time a month for it and not the usual every 3 weeks as before. We schedule it with the Oncology IV room which Lucas hasn't been back to in some time. The catalyst for getting Lucas back to CHOP next Tuesday, a few weeks ahead of his scheduled appointment was not only the failed try with Mepron, but the fact that Lucas had his Botox and Alcohol Block injections on Tuesday and just as we were going to get his clothes back on, we noticed 2 of the injection sights had liquid oozing/seeping out. Dr. Armento immediately new it wasn't the Botox coming out as they are injected very deep into the muscles, but rather it was Lucas's edema leaking out. His legs were still bloated from his recent complications and it appeared the needles had allowed the edema to start coming out. As of today, it's still leaking, but not as much as on Tuesday. The concern is for infection around the site, hence, Dr. Magnusson wanting to see Lucas next week.
On Monday, we took Lucas back to school for the first time since February 16 when he aspirated. Everyone was so happy to see him, especially his classmates. Lucas was visually happy and yelling out loud and his friends were right there with him. Their emotions and excitement got to the both of us as we could see how much Lucas is loved in his classroom. It was a special day for Lucas and for us to see him returning to school after his 2 month ordeal. Seeing him fight through all the problems, especially back in February when he was in very bad condition and laboring to breath, made us realize how fortunate Lucas was to be back at school. He's still not out of the woods yet and they never really knew what truly affected him and caused everything. We kept him home the last few days after his Botox to monitor his legs. Tomorrow, we're planning to take him back to school for a few hours. He's been tolerating sitting in his chair for 2 hours at a time for 1 or 2 times a day. Our nursing was approved for 8 hours to the end of June. Lucas has still been waking up a few times each night. We are still monitoring his urinating and we've had to catheterize him a few times once we feel his stomach is too distended and he hasn't gone in 8 hours. Overall, we can see how much the last few months set Lucas back and that things have gradually gotten worse, not better. We can see how limited we are with doing things with Lucas. Until his BM's are more under control, simple things like school and even going for rides are not taken for granted. We know he's not nearly as portable as even several months ago and he's not as comfortable being transported in the van. Tomorrow is another day and we have a kid who needs to laugh and smile and that's our focus for tomorrow. (One final note - Lucas has a new roommate, Louie the Lobster (actually a small crayfish). His PT's Jon and Sherrie stopped by last week with Louie and the fish tank. He's given Lucas some laughs and Mom more work.)God Bless!
Sunday, April 12, 2009 7:22 PM CDT
Thank you for checking in on Lucas!
Lucas has been rebounding very well the last few days. This past week we had to play each hour as it came as he had some bouts of gagging and choking. We called Dr. Magnussen each day and kept him posted on Lucas. We would stop the feeds and let him rest, but he gradually got overcame the problem. He's been sleeping better during the night and his BMs and urinating have gotten better. On Tuesday, we conferred with CHOP about taking Lucas off his Bactrim antibiotic. He switched to Bactrim a while back from his Pentamadine IV infusions he was getting every 3 weeks. The 2 days a week he gets Bactrim, he would have diarrhea and during this 2 month ordeal, with all the problems he's had with his BMs, we felt that maybe this isn't the best thing for Lucas and that maybe we should go back to the IV. We switched because it meant Lucas having to go to hospital every 3 weeks, the problem with accessing a good working vein for him plus the wear and tear on all of us with all the other hospital visits. They felt it would save about 17 visits a year, but we're now back to thinking it's better to eliminate the Bactrim and go with the IV's, which were not as harsh on his lower intestines and stomach. Right now Lucas is laughing more and actually moaning and getting mad if we don't change the TV fast enough. He's more alert, but we're still working on getting him in his chair more and trying to get him used to sitting up which may take some time. He gets very tired sitting in his chair, but we hope to take him back to school when Easter break is over. Thank you do Dr. Connor's of Little Silver, he's Lucas's Podiatrist and he made a house call on Friday since we couldn't keep Lucas in his chair for the appointment. We're calling Dr. Armento to book Lucas's Botox procedure early May. Thank you to everyone for helping us during this past 2 months and keeping Lucas in your prayers. We hope all have had a nice Passover and Easter. God Bless!
Wednesday, April 8, 2009 8:53 AM CDT
Thank you for checking in on Lucas!
We've been in constant contact with Dr. Magnusson as Lucas has been gagging and building up excessive air & gas. We have a special bag that attaches to his feeding tube that we keep connected to him at night and it should allow most of the air out of his belly, but it's not been that successful. Lucas was up all last night and we were suctioning him constantly. Right now he's still retching a bit and we're all brain storming trying to figure what's not working. Could it be a med interaction or his gaul bladder or the possibility if all the organs having shifted in his body and putting pressure on whatever. Very frustrating for Lucas, however, he still manages to laugh at Pokemon and our stupid silly stories. This is all happening at a tough time of year for us. We may have to ambulance him to CHOP at anytime. God Bless!
Saturday, April 4, 2009 58:40 PM CDT
Update Saturday, 4/4:
Lucas was discharged around 3 and is now home. He had a few moments of not breathing very well this morning, but Dr. Magnusson still felt he was OK to leave. He did fine on the long drive home, however, as soon as we got him in bed, within 10 minutes he started gagging & choking and had to be suctioned. He hadn't done that in a few days. Not what we were expecting, so we'll have to keep a close eye on him to make sure he doesn't relapse. God Bless!
Sorry for not updating sooner. They changed the website access last weekend and we couldn't figure it out. We didn't see on the bottom of the screen the box for signing in for the old original websites.
Lucas has been at CHOP since last Wednesday. After a number of tests and consults we couldn't determine what was wrong with him not urinating, having diarrhea and not tolerating his feeds. They continued to have him hooked up to TPN, but a few days ago they switched to 100 ormula. He gag and choked a bit at night, but somehow he worked through it and is almost back to his schedule before this ordeal began on Feb 16. After all of this, they really don't know what it was, but it may not have been the reflux as guessed, but rather his body being so run down from working so hard all the time, the severe impact of a stomach virus was too much for him to handle. They are not repairing the Fundalplycation after all and will let it go for now. Dr. Magnusson felt we had to give his lower intestinal system a rest and it may have helped him start to get on track. In Lucas's room there are signs everywhere warning people to be very gentle with him and his bones. Last Saturday while changing his IV, the person grabbed his left arm and Mom couldn't stop her and Lucas cried for 20 minutes. He had it iced for a few days, but it still bothers him when we move him to change him. Dad visited Lucas on Tuesday dressed in his Killer Clown costume and he got a big kick out it. They saw the Lucas laugh in action, something that's been missing for 6 weeks. It may have scared a few other people, but Dad only put it on outside his room. Lucas is getting music therapy right now and the only songs Mom told them to play were Elvis songs and he's enjoying it. Abby is hanging in there with Dad who's trying to cope with work right now. We're very optimistic that Lucas could be coming home Saturday at this time. God Bless!
Wednesday, March 25, 2009 9:42 PM
UPDATE WED 3/25:
Lucas was ambulanced to CHOP this morning from Monmouth Medical Center. He had a swallow/milk nuclear study and an endoscopy, but initially nothing showed up. Dr. Teitlebaum our GI doctor took some biopsies and was going to send his results to CHOP Thursday morning. Lucas had a visit at Monmouth from a Nephrologist as his blood pressures were extremely high. One reading was 171 over 110, but most were not that high but still very high. His first stay a few a weeks ago yielded some blood pressures of 115 over 70, the best he has ever had, but now they're running very high. Both doctors felt that they and staff at PICU had done everything they could do and that it was best for Lucas to go to CHOP. We can't say enough about the Docs and nursing staff at MMC and the great care they gave Lucas and Mom. There are some new types of tests that can be conducted at CHOP for Lucas that for that matter can't be done at most hospitals. When Lucas arrived at CHOP today, he was taken to the 4th floor of Seashore House. The same floor where Lucas gets his Pamidrinate IV for his bones. He was visited by the Dr. Magnusson and discussed what they'll try to do and that he'll organize all the disciplines and put their heads together, then the GI docs, who know Dr. Teitlebaum and Ann from BMT. Tomorrow the Nephrologists and a few others are expected. In some strange way, Lucas seemed relaxed today and when Ann came in he moaned "Ann", which he would normally do with our frequent BMT visits with her. She immediately noticed that Lucas's skin looked very good. His urinating is down again and his stomach is a little distended and his Adema/skin is hard. He's only had 3 BM's today so far which is better.
It took the staff there some time to organize Lucas's medications. They said it was a bit overwhelming and a few of the doses came up as excessive for his weight, etc., but we explained that's what he takes, especially Baclofen, which he's been on for about 7 years. Everything seemed to get organized and Lucas is in his own private room. As Mom said, it was nice at MMC PICU with the nurses and doctors, right there in the room 90 f time, but it was a bit more noisier sharing the room at times with 2/3 other kids and the noise and commotion that goes along with it. Lucas has a very difficult time with too much noise as he his body and nerves can't take it some times. Today at CHOP, we believe Lucas was adjusting very well to having a quieter environment and we're hoping this will help him. On Thursday, Dad is going back with Abby and Grandma for the day. Mom is tired, but she's hanging in there with Lucas. It's definetly not as convenient as MMC being right around the corner, but an 1 hour 45 minutes isn't that bad especially with no traffic. It's been a very rough 5 weeks for Lucas. We hope to get to the bottom of this and get him home as soon as possible. God Bless!
Saturday, March 21 2009 6 pm
Update, Saturday 3/21:
Lucas progressively got worse through the night and was severely retching and choking and since we couldn't get him in his chair, we called 911. Our town squad and police showed up and we got Lucas easily on the stretcher and off to Monmouth Med Center at 1 am. Abby went with friends. Lucas went back up to PICU at about 3:30 am. We told them we didn't think we'd be back so soon. An IV was immediately set up and he steadily slowed down his gasping and retching. It helped to stop anything going into his stomach. They took several Xrays and Dr. Garoza informed us that one of the Xrays showed that the J tube in the Junum has recoiled and come back into the stomach. In other words, instead of a small catheter winding its way to the Junum, it's basically backed up, so the water feed we were giving him was basically not going where intended, hence, his inability not to urinate and his being distended. They started IV antibiotics because they feel he also has a urinary track infection. We feel we made the right decision to call 911 and didn't wrongly decide that he could get through the night. He was very limp and lethargic. On Wednesday he went from starting to laugh more to non responsive. He didn't even moan with commercials, we knew something was up. The game plan now is to get him stable and we believe sometime this week he'll be ambulanced to CHOP to be admitted for having his Fundalplycation re-attached. The feeling with the Docs right now is that could prevent any further aspirations and that using the GJ approach to avoid putting Lucas through a surgical procedure is not an option now. Lucas would stare you right in eye while gasping and choking and it felt like he was conveying to us to do something and we did. We hope this route works and gets him back on course. It's been a brutal period of time for Lucas since February 16, but he somehow hangs in there. God Bless!
Update, Friday 3/20:
Not too long after the last date, things went downhill fast for Lucas. His cough got much worse and his build up of gas was causing him severe discomfort. He woke up every 30 minutes the last 2 nights. We were on the phone with CHOP and Dr. Teitlebaum trying to figure out the why. An IV nurse came today to draw more labs and hopefully the results will be ready Saturday. We tried a few new medications to release the gas, no help. Lucas has been more tired during the day, but towards late afternoon he gets way out of sorts. He grunts continuously and is very restless. We slowed the feeds down. His diarrhea has gotten under control, but now we've had to catheterize him. He can't tolerate sitting in his chair. It's very painful and frustrating for him and us. We may have to take him back to PICU very soon. God Bless!
Update, Sunday 3/18:
On Monday, we attempted to take Lucas for his blood work, and after getting him in the van, it wouldn't start. We called AAA explaining that we needed to get our son for blood work ASAP and within 10 minutes a truck arrived. They replaced the battery, however at the same time we called our insurance case worker, who has been helped us out so much in getting things approved before. She told us to stay put and not to take him out of the house. She had our IV infusion supplier send over a nurse to draw labs and said as long as Lucas is still recovering from this, that will be the case. We joked at least the battery was under warranty from AAA and we got a new battery for our aggravation. His labs showed some improvement and we were able to stop giving him the phosphorus and lower the potassium. His diarrhea has gotten better, down to 5-6 times a day and his urinating remains a problem getting him on track. Michael Feinberg stopped by Monday night to suction Lucas and to check his lungs. He said they sounded very clear and that the gunk was just in his throat. That's where it's been for now and Lucas has had spasmatic coughing the last few days, where he won't stop for several minutes. We constantly suction out his mouth for any build up, but overall it's the best he's been since early February. He actually slept 5 hours straight last night, which meant so did Mom. Mom has been sleeping with Lucas each night, allowing Dad a little more rest for the push to 4/15 with his work. We had him outside with our nurse Valerie for 1 hour this afternoon. He's laughing more at TV and our jokes. Right now, we get 8 hours of nursing each day from 1 to 9 with 3 nurses, his original 2 Angela and Barbara and now Valerie. They're very good with Lucas and manage Lucas's TV demands very well. He still labors a with breathing a bit when we put him on his side to change him. His skin today looked pretty good with just several GVH spots. Mr. Feinberg made a recommendation that we switch Lucas's breathing treatment to Xopenex instead of Albuterol and he still gets 2 treatments a day. Lucas is still weezing and we're not sure when the treatments will stop. We've discussed with CHOP and Dr. Teitlebaum about Lucas's Fundoplication which is untied in his stomach and that we may have it Laproscopically mend it. CHOP can do the procedure without general surgery and it would require about a 3 day stay. If he continues choking and gagging we may take him in for it. His feeds are still continuous throughout the entire day, except at night time. At times, we slow the rate he's receiving if the choking and gagging gets bad. Before this whole episode, Lucas got 4 feedings a day which took about 400 mls an hour and now his continuous feeds go at a rate of 85 mls an hour and he's still choking. The new pump is small and quiet and easy to operate. Also, since we're not moving Lucas nearly as much as before, the seizures have come down to 2-3 a day. They normally were triggered with moving him. We again want to thank everyone for checking in on Lucas and for everyone who has helped Lucas and our family financially, emotionally and with meals. God Bless!
Update, Sunday 3/15:
Still waiting for Lucas to feel better and have something more positive to say. He's still coughing day and night, but the BM's have come down to about 10-12 a day. He's urinating a little more and we weigh each diaper to measure it output. Still no where normal for him, but the last few days haven't been good for him. We've been suctioning him constantly and trying to prevent any further aspiration. The lobster's in the picture were compliments of the Little Silver PTO and this is as close to smiling he's gotten. He's just not himself and we need to get him off these new meds as soon as possible. At least Saturday night he went about 3 hours non-stop sleeping, first time that long in a month. Too much coughing today and we're keeping a very close eye on him. God Bless!
Update, Wednesday 3/11:
The days and nights have not been easy for Lucas. He had his blood work done Monday and Wednesdays' results showed that we could lower the potassium. We have to do something and figure out a course of action between CHOP and our local docs. He's still having 6-7 BM's through the night and another 6-7 during the day. He's going too long between urinating. We catheterized him at 3 am and again this evening. The scheduled nurse had a virus and couldn't make. We had to try get something out of him. He's getting very distended and going without being catheterized every 12 hours. We were very grateful for our friend Micheal Feinberg stopping by tonight to check out Lucas's breathing and congestion. He's a respiratory therapist at Kessler and has stopped by when we called several times before. He said Lucas's lungs sound clear, nothing in the lower lobes, but it sounds junky in his neck. He did some deep suctioning in Lucas's nose and throat and it seemed to help for now. But Lucas is just not comfortable and he's very restless. He's still fighting something. We know his stomach isn't doing well. Only water is going his J and the meds/feeds are through the G. The GI doc still thinks he's adjusting to the new tubes, but it doesn't seem to be too different from his old G. When we move him to his side, he shows severe pain with his left leg that was just recently broken. It could be his dislocated hip too. We've been suctioning him several times an hour. Today he did better in his chair as he lasted almost 1.5 hours. Normally we get him in his chair and he has a BM. His GVHD is also flaring up and starting get us concerned. He doesn't need that to deal with right now. We want to thank everyone for checking in to see how Lucas is doing and offering to help. It's very tiring for us all, but you always find the energy for your child no matter what, and we've always seemed to find it for Lucas after almost 7 years. God Bless!
Update, Saturday 3/7:
Lucas has been struggling the last 3 days since coming home. He's not urinating that much and we're closely watching it. He has about 12 or so BM's a day, diarrhea is still a concern. The last 3 nights he's woken up every hour on the hour throughout the night with a BM. They have been long nights for Lucas and us. He's still not very comfortable, even with being home. We've had 2 new nurses coming by from 1 to 9 pm and his 2 other nurses are coming in this week. Lucas will have 4 different nurses stopping by to help weekly and each so far has been very good with him and caring. It's just been a tiring crazy time since he's been home, but it is easier being home. His Pulsox machine is hooked up and the oxygen tanks are under his bed. He still gasps for air and makes choking sounds and we have suction him ASAP. The nights haven't gotten any better, but we hope and pray he can get on track soon. We already changed his potassium dosage and hope this may help with the diarrhea. However, if he can't start urinating more and if the diarrhea continues, we're going to have to take him back to the hospital and start IV fluids. We hope to avoid that. We appreciate everyone checking in on Lucas, stopping by to see him and helping with food and support. God Bless!
Lucas arrived home at 2:30 today. He's managed to urinate on his own and the diarrhea is not as bad. His blood counts are OK, but he's back on 4 new meds to help with his Electrolytes. Once we got him in his chair, he had a BM and we decided to get him home ASAP. He's resting comfortably right now. We came home with a new feeding pump, breathing equipment, a new vibrating vest to help with his airways and we're just waiting for the people to come by with Pulsox machine. Extra oxygen tanks are coming along with our home care nurse any second. We must commend the doctors, nurses and staff at Monmouth Medical Center PICU. We made some great friends and Lucas and our family truly appreciate everything they did for him the last 16 days. God Bless!
UPDATE, TUESDAY, AM:
Since last update, Lucas has been holding his own. Nothing too positive to report except that he's resting comfortably and hasn't needed oxygen for a few days and no albuterol. He still has diarrhea and some of his blood counts still haven't reach the level the doctors are happy with. They realized that his stomach has so much air, that we have to constantly turn him from side to side. This is obviously very painful Lucas as we try to limit moving him and do our best to be fast when doing so. They feel we have to keep him moving in bed, although he's not been comfortable in his wheelchair. With all that said, the doctors feel that there's not much more they can do for him and that we should plan on getting home Wednesday afternoon. With 8 hours a day of nursing, we feel we can manage just fine at home and hopefully Lucas will receive the best medicine of all, the comforts of home, TV and family. They've been very resourceful at the hospital and diligent with Lucas and although they would not normally release a patient in Lucas's condition right now, they weighed all the facts and agreed with us that being home will be best for him. God Bless!
UPDATE, FRIDAY, PM:
Lucas has slowly worked his way back to a reasonable comfort level. He's still receiving Valium to calm him when the restlessness and spasms start. They started his feeds at 15 mls per hour or the equivalent of 3 tablespoons an hour, not very much. At 5 today, they raised it to 20 mls per hour and the hope now is to raise it by 5 mls every 6 hours and to hopefully slowly allow his stomach to tolerate it. His temperature has come down, but it spikes back up and so do the spasms depending on the level of noise and anxiety in the PICU. For the last 2 days/nights, Mom had to deal with constant baby crying, which as we feel, the baby is sick and can't help it and the parents are frustrated because their child is not feeling good and is crying. We totally understand, but the problem is that Lucas can't be moved because of his critical condition and the babies have to be in there with him. The noise is causing him to spasm and get extremely restless, thus causing a fever and requiring tylenol to bring it down. The Valium or Xanax hasn't worked the last few nights. As of right now, it's a bit quieter as a few of the kids have moved to rooms. The BMs have slowed down, but we believe he's experiencing some very sharp discomfort in his stomach and it could be because the feeds are going to the Junum through the J part of the tube. We're trying to avoid the G, Gastro part of tube which goes right his stomach. Right now the feeds go through the J and his meds through the G. Trying to avoid the G for his feeds and praying he can learn to tolerate it through the J in hopes of avoiding future aspirations. If it doesn't work, we won't use the J tube and will take our chances through the G. Mom's been their all week and will be coming home Saturday afternoon with Abby while Dad stays over. Abby has been doing fine through all of this, but she's 11 and 1/2 and kind of sees her brother's condition differently now than even last year. It's starting to affect her of how vulnerable Lucas is to things he can't control and how much he has suffered and endured, but yet fought through. She's starting to understand that he may not be able to overcome another rough ordeal like this. Mom is very tired and the long nights have taken their toll. Hopefully Lucas can come home this Tues or Wed if the plan works. Dad is in the middle of tax season and has postponed meetings and has fallen behind a bit. Between the power outage 2 years ago and pneumonia last year, this time of year has not been friendly to him, especially with a limited number days to work with. Overall, we all have learned to turn it up a notch and get done what needs to get done no matter what it takes for the kids. We truly appreciate everyone asking about Lucas and sending him your thoughts and prayers. Thank you to everyone who's dropped off meals and gift cards. No matter how much this has set Lucas back, we're determined to get him back to his old laughing self. God Bless!
UPDATE, THURS, AM:
Lucas had a miserable night with about 12 BM's, severe spasms and gasping for air. Their feeling right now is that he can't tolerate his feeds and is losing nutrition and liquid to fast. They hooked up the catheter again and think the feeds must go in even slower. Trying to balance what he needs with what he can tolerate. He now weighs about 74 pounds, down from 78 when he was admitted and down from 81 when the fluids had bloated him. That's too much. He feels even more delicate right now with moving him. Lucas is trying his best to come home. It may be another 4-5 days for that. He continues to deal with the pain as the valium & xanax are not helping him much at this time. Too rough a night for him, but he fights on. God Bless!
Update, Wed, PM:
We moved Lucas into his wheelchair for the first time in 10 days. He tolerated it pretty well for about an hour. They're now contemplating discharging him Thursday afternoon, but only if he can handle a 24 hour feed and his diarrhea eases. His potassium counts are still behind and they're working on that for him. Right now, they took out his catheter and he's not urinating yet. He still has severe diarrhea and is running an average temperature of 100. He's had moderate spasms since we got him out of his wheelchair and his oxygen levels have not been good. He's requiring oxygen right now, plus we've already received all of his breathing equipment to come home with. We're thinking when he's home that his spirits will pick up and help him heal faster. It's up to the docs in the a.m. We hope he can turn things around tonight. He may be doing better than the last several days, but he's still very tired, lethargic and feeling a lot of discomfort. This whole episode has sent Lucas way back and has taken a toll on his body. He can only battle so much and we don't know if his body could be able to fight another infection or respiratory problem if he relapses. God Bless!
UPDATE, TUESDAY, PM:
Over Monday night, although he woke up several times, Lucas starting looking and sounding better. He was still getting oxygen, but the bloating of his body had subsided and he lost 4.5 pounds. The water retention forced him to gain 2.5 pounds the last few days and this caused his skin to get hard as a rock, but he had a good, constant flow of urinating, thus flushing his body of all that excess fluid really helped. This enable some of his counts to improve, and it was probably better that the GJ didn't come in until today, Tuesday, for his procedure. If it had come in on Monday, they felt his counts weren't good enough for the insertion of the tube. Radiology inserted the GJ tube this afternoon after putting Lucas under a light sedation. It worked out fine and we just have to monitor it for leaking. He's still running a fever in the high 99s, but his color, skin texture and breathing have all improved. He still has diarrhea, but hopefully that will subside as they stopped the antibiotics last night. During this hosptial stay since last Monday, Lucas has been receiving his normal meds. We hope to start the feedings tonight and will see how he tolerates it. They don't want to discharge him until his overall counts are better and the GJ tube is working properly. He's showed some signs of smiling and starting moaning a lot more when DVD had stopped. That's Lucas way of telling us he's getting better. He's still not over this 100but compared to the last several days, it's great to see him doing better. He will be coming home with breathing equipment and we'll be going back to the Automatic Feeding Pump for his feeds. The last few years we've been using gravity bags, but he cannot tolerate that speed anymore and it's back to the pump. Thank you to everyone for the postings, emails and phone calls and dropping off food. God Bless!
Update, Sunday, AM:
Since Thursday, Lucas has been laboring to breathe, even with Albuterol treatments and constant oxygen. We asked the respiratory therapist to see if she could go down Lucas's nose & throat and get some gunk out. She went way in there and suctioned a lot of junk out and it made a little difference with his catching a breath, but he was still laboring. His lungs sound clear. He's had about 10-12 BM's a day due to the antibiotic. They're now thinking he has Roto-Virus and it's causing him a lot of discomfort. He's became very stiff, more than normal, and very swollen. We asked for some Lasik and he received a dose Saturday night. Within 1 hour, he let out 350cc's and right away his skin was not as hard. He's still fussing a lot. We had to get some fluids out of him, but one of the side effects could be constipation, but nothing right now with that. Lucas's breathing up til this morning was a gasping noise every 5 seconds and his body was working hard. He's a bit better right now, but still very lethargic, restless and weak. He shows no emotion, but we hope he can start working his way back to being better. We hope the GJ tubes arrive Monday AM and that the procedure goes well without a hitch. It's been less stressful being 15 minutes from home and as we mentioned the other day, the care Lucas has been receiving has been excellent. We know we're forgetting a few things, but we are very grateful for all the postings and phone calls from everyone. We do appreciate it! God Bless!
THURSDAY UPDATE:
Lucas is still in PICU. He's had a few very rough days. They're saying he has aspiration pneumonia (or vice versa). Wed, they put in the GJ tube, but it was a size14 french, and Lucas needed a 16 french. It was also not supported by a balloon inside his belly. It was sutchered in and has no support. It's been leaking and the pedialyte and meds sometimes spit out. It's got no place to clamp and our nurse rigged a clamp with scissors. Lucas can not have stitches/sutchers for his very high risk of infection. CHOP contacted the PICU and after a discussion, the GJ tube now in must come out ASAP and they advised that they order the right GJ size for Lucas and put it in immediately. This will be permanent for Lucas and comes with some issues, but CHOP feels its best right now. The G allows the meds in and the J allows his feeds in to the lower bowel and will hopefully cut back on his refluxing and gas problems. Lucas is very lethargic and starry eyed. He's not showing any emotion to us or anyone and he'll gasp or retch every 30 minutes or so. He's not been in his wheelchair since Monday and may have to come home in an ambulance. He's had some seizures, but hasn't smiled once since Tuesday. We've been very happy with the doctors and nurses in the PICU and know they're doing their best with Lucas. We know he's very complicated but we appreciate they're efforts with Lucas. Being local with CHOP's guidance has been good for our family. Abby's been to see Lucas each day and we've been staying until 8 pm with a 15 minute ride home. CHOP knows it means a lot to us to stay local when we can, especially this time of year.
Monday afternoon around 2, Lucas was resting in bed and started to gag and choke and have shortness of breath. We vented him and his entire feed came out. We called Angela his nurse to see if she could come a little earlier than usual. At 3:30 Lucas had another severe episode and we called his pediatrician Dr. Lipp. He was very concerned with it being a respiratory issue and had us take him to the ER immediately. We checked Lucas in and started the long process of explaining his meds and history. The kid next to us was vomiting and had a rash and we requested to find Lucas a room. We had to explain that he's on immunal suppressants and has no immune system. They took several Xrays and drew blood, but they were concerned that he had aspirated and that they have to admit him to PICU. They could see something on the Xrays and were concerned that he was developing pneumonia. They started him on an IV and started giving him Antibiotics. Mom has stayed both nights with him. Lucas's GI Dr. Teitlebaum saw him this morning and ruled out any GI problem and said it was pulmonary. He had 2 more incidents of choking and breathing really bad with the on call doctor and our nurse watching. We vented him and it settled him down a little. They called back Dr. Teitlebaum and Lucas had another episode in front of him so he examined him closer. It's was still hard for him to tell, but he suggested that we switch temporarily to GJ tube which would require a Radiologist to insert. He would like to see Lucas switched back to a G tube in a few weeks, but we have to see even if this procedure can be done with Lucas's other issues. They flushed through his tube a liquid while a Radiologist examined him and all it showed was that his tube was working fine. This test didn't tell us anything. Lucas was supposed to have his Oncology visit at CHOP today and Orthopedic and Podiatry tomorrow - all canceled. Right now he's still in PICU and probably will be for at least Wednesday. With all that he's suffered with and been through, he was still laughing at the Rugrats cartoon. His breathing rate has not been very good, so we're still waiting for the on call Pulmonary doctor to see him. The last few days have been tough ones for Lucas and it's been a delicate act transferring him for some of these tests as it's very difficult for people to understand how brittle his bones are. It's not easy putting an Xray behind his back when he's in bed. Until someone has witnessed how easy a break occurs for Lucas, they can't understand. God Bless!
Thursday, January 29, 2009 8:46 AM CST
Thank you for checking in on Lucas!
January is coming to an end and Lucas has made it through with no major infections or colds. This takes a lot of work and common sense. Unfortunately, moving him has been very difficult the last few weeks and it seemed to be with his left leg. We took him Tuesday to our local Orthopedic Dr. Mckeon and the Xrays confirmed that he has another broken leg, more specifically on his lower femur. Same drill as before, just keeping him in his immobilizer for 2 weeks and hoping it heels. His left foot/toes were shaking over the weekend and he's yelled out in pain a few times from moving him, so we decided to have it checked out. The doctor and our case worker say that Lucas is their little Pringle Potato Chip because he's so brittle and to protect him we have to keep him in a case. They don't move him at school, so we're back to getting him home ASAP to change him. His nighttime breathing has not been very stable and we've looked into seeing the Pulmonary doctor about our options. Waking up 3-5 times a night to listen to him is normal now. His skin has been very dry and a lot of creaming daily to moisten it. CHOP has had us stop giving him the Cellcept as we had been weening him off it the last few months. This is his first medication (the most expensive too, $600 a month) that he has come off of in several years. In February he has his next Pamidrinate IV for his bones, his next Oncology visit and he gets his Botox too. A busy month for him, but he's been going to school everyday except for the frigid days. He still moans a lot when he's not happy and the seizures have increased in duration and number of over the last few weeks. We're just staying the course right now and will see if we should increase his Neurontin down the road. The nursing was approved to the end of February and hopefully it will be renewed again.
Also, we'd like to thank everyone who continues to send money to help with Lucas's medical expenses and those who continue to pray for him. We truly appreciate it. God Bless!
Sunday, December 14, 2008 11:40 PM CST
UPDATE TONIGHT: Lucas starting severe spasms around 4:30 pm. He hasn't had such bad ones in a while. We don't know what triggered them. The nurse and us tried to calm him down. We tried valium, but it was useless. About 20 minutes ago at 11:20 he finally fell asleep, but not after 7 hours of trying to hold him down and console him every minute. He was moaning and crying at times. They were similar to the ones he got back in 2003, but we don't know why. He's been holding his own the last few weeks, going to school each day. Hopefully Monday will be better.
Update: Lucas had his Botox injections on Tuesday. Dr. Armento tried to put more in his left shoulder in hopes of helping him bend his left arm a bit more. When we got Lucas set up in his room, he started to cry a little as he heard Dr. Armento's recognizable walk and sure enough when Dr. Armento poked his head in Lucas yelled a little louder. He knew what was coming, but he did just fine with the procedure. Lucas has not been himself since then, even though his previous blood work showed his white count to be on the low side, we're not sure what's bugging him. He doesn't have a fever, but the cold weather could be bothering him. He has been coughing a little and having a tough time with his secretions. We have been suctioning him as needed and hope that he will start to feel better soon. Dad's Velame brothers from our town are coming Saturday to replace the windows in both Abby's and Lucas's bedrooms as they're rooms get a bit colder this time of year and to also reset the insulation. They're always there for Lucas and our family even during these tough times.
THANK YOU FOR CHECKING IN ON LUCAS!
Back on October 20, Lucas received his Pamidrinate IV at CHOP for his bones. His next one is in February. Prior to him receiving the IV, he had a few dental appts. with Dr. Lieberman. Each appt. Lucas had 3 teeth pulled as once the treatment begins, he would no longer be able to have any dental work done for a while, so all remaining baby teeth were pulled. They had to stop by the house to stop the bleeding after the 2nd round. Overall, he did just fine with the pullings and the IV. There were no complications or reactions to the IV. The next week we were supposed to take him back to CHOP for his Oncology visit, but the weather/Nor'easter kept us home. The Bone Density dept. wanted his blood work done 7 days after the IV, so we decided to take him Jersey Shore Medical Center nearby for his blood work at their Day Stay Dept. Dr. Terri Wurmser, a close family friend, is director of nursing there and put us in touch with the head of Pediatric nursing Anne Marie to get Lucas in right away. It worked out fine. With Horizon BC/BS still dropping CHOP this March, it was our opportunity to visit and check out JSMC. Right now they are determining if they are able to look after Lucas if our insurance problem is a reality. But in any event, the hospital is striving to become a regional pediatric center and after years of driving to Philly every week or couple of weeks, we're trying to cut back on the CHOP visits as much as we can.
We recently had our 4 hours a day of nursing extended to December 31 and everyone doesn't see how it will not be extended beyond that considering Lucas's seizures and bones. We don't go anywhere when the nurse is here as the time allows us to cook, get Abby to dance and help her with home work. Dad's been able to get some work done in that window. Angela has gotten real familiar with Lucas's cartoons and the channels. It's a small respite for us to not run in and out of his room every few minutes changing the channels. Lucas has still been having several seizures a day and it's been a battle keeping his skin under control, especially his bottom. He's been going to school every day and we've been coming home after dropping him off to get a few chores done. A few days we've picked him up he's had a BM and that's one of the problems with his bottom as it takes us 20 minutes to get home and then 10 to get him settled in bed. School is still a great stimulation for him and we do everything we can to get him there rain or shine.
Mom has been busy keeping up with Lucas's EOBs and bills. The Spaghetti Dinner at Gethsemane Lutheran Church was held on Oct.4 and was a terrific success. We greatly appreciate everyone who helped and stopped by the Church to help Lucas with his expenses. While at the church, we took Lucas back to the time out room and he amazingly only had to see it down the hall to remember it. He spent a lot of time there his first year in preschool.
We have to get him for an eye appt. as his last visit was at NIH in Bethesda in May, 2007. We have to check for Cataracts. We are extremely grateful that Lucas still has his vision and we must make sure it stays that way. Lucas's visit to Jersey Shore Medical was his 10th hospital since June, 2002. He's logged tens of thousands of miles by plane and van to hospitals the last 7 years. We still find people who ask about Lucas and don't know his situation. We do get him out and about, but we tried to avoid crowds and like to keep it low key. He still has no immune system. We're not ones for attention, however, there are many people who haven't met Lucas or seen him in years. Many don't even know that he can't swallow, can't eat (has a feeding tube), can't walk, can only move his right hand occasionally and can't talk. All that he's endured the last several years has not lessened for one day, but his ability to deal with suffering and pain helps him and us get by each day. A close friend told us that many people don't think too much is wrong with Lucas and that things are probably going very well, because the whole situation is so routine to us and Lucas that we don't give it too much thought and don't make a big deal about it. What's the point, it is what it is and for Lucas's benefit you give him 100�f your energy, just like many of the other parents with terminally ill kids. Some days are worse than others, but you think positive and go on. The promises you made your child when they were young and reached an age in their life are not realistic for Lucas. It was always his dream for a few years before getting sick to travel with Dad on a medical mission and experience the things he wanted to see and smell first hand. The medical team still goes on their trips without Dad, but they always remember Lucas's goal of wanting to go with them and know it's tough for all of us. Lucas was named an honorary mission member a few years ago by Dr. Sy of the Aloha Medical Mission in Honolulu and he still gets emails, etc. as any other member.
God Bless!
Sunday, September 28, 2008 10:15 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas met with Dr. Magnusson at CHOP the other week to go over all his tests and visits during the summer. The conclusion was that there are some new concerns (urination, coughing/pneumonia, aspiration issues, etc.)that need to be addressed. But, we basically knew about them before and now we have to decide the best course of action that is least invasive to Lucas. Although his EEG didn't show any seizures, Lucas had one right in front of Dr. Magnusson and it took about 15 seconds to bring him out of it. We are waiting to hear back from the Neurologists if we have to raise his Neurotin. He still has about 2-3 that we see ourselves that last up to 30 seconds. He concluded that we're doing everything we can do, but however he suggested that we try to secure a piece of equipment to help Lucas clear out his congestion/phlegm - Coughalator. He's working on getting that approved as with extended home care either with nursing or an aide.
We have been told that we can never lift Lucas up from his shoulder blades. In other words, the lift system gradually bends him at his lower spine behind his butt with support, but bending him in a normal lift motion under the shoulders would probably result in more fractures. We have learned to lift him with his lift netting, thus simulating the same motion of his lift machine. It's all arm and wrist strength and you can't get your back into it, but we can't travel with the lift. Our hope with long rides to the hospital now is that he can #1 travel far with little pain for him and #2 not have a bowel movement that we'd have to move him immediately wherever we are.
Lucas had 3 lower teeth pulled last week and we hope to start the Pamidronate IV infusion for his bones very soon. He has to have all dental work done now before he can start it. One of the side effects is that the IV could cause less healing for his lower jaw and gums after any dental work and it's suggested to have it done in advance. Lucas has been going to school each day and we have actually come home a few times in hopes that he didn't have a bowel movement. Abby celebrated her 11th birthday on Sept 18 and is doing fine in school and participating with dance and Girl Scouts and helping some of the Mom's in the neighborhood as a mother's helper.
One last note, Gethsemane Lutheran Church is holding a spaghetti dinner next Saturday October 4 in Keyport (Maple Place and Main St.)around 5 pm. Good News preschool is part of the church and is the only preschool Lucas wasn't thrown out of. Lucas gets to make his annual pilgrimage to the "Time Out Room" where he spent considerable time. When he gets off Exit 117 onto Rt 36 he knows we're going to his old preschool and begins to get very excited and yells. It is truly amazing that he can remember those days almost 11 years ago. They have always been there for Lucas and continue to show their support each year by holding a fundraiser for Lucas's medical expenses. We appreciate their support and love for Lucas. God Bless!
Sunday, September 14, 2008 7:53 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
There has been a lot going on with Lucas the last several weeks, but we're going to make this a shorter update as we meet with Dr. Magnusson this week to kind of review this summers appointments with Lucas. Our meeting is right after Lucas's Oncology visit.
Xrays have indicated that Lucas has had multiple compression fractures on his spine. Besides the Radiologists report at CHOP, we've had 2 orthopedics review his Xrays and that's the conclusion from all 3. (Mom noticed on one of the Xrays a foreign object in his lower abdomen section. It appears to be some type of suction catheter from a previous surgery). What to do and how to proceed has the same answers that Lucas is used to - do nothing. CHOP feels that he's going to have more breaks and fractures and why have Xrays, however, we have to know what bothers him and why he's in pain. We can't assume he has more breaks and have rule them out, but for right now it's been very difficult moving him. His body vest is useless now as we can't lift him manually,so we must use the lift system all the time. It's hard moving him with help for Xrays, etc. when not home. We just got a new vest/corsette, but it's proving difficult to get on him and he's not happy wit it. We can move him side to side, but we can not lift him upright. With the help of Dr. Barsky and CHOP, we did get home nursing approved and Lucas has had Angela, an LPN from a local home health agency coming for 2 weeks now. She comes from 4 to 8 each day and has been a really good fit for Lucas. Preliminary time frame is until mid October, but we're working on extending that. Angela has adapted to Lucas's moans with commercials and has learned all the cartoons and DVR programs we've taped. She has been keeping him on his side for about an hour each day and has blended in with our family very well.
Lucas has been going to school each day, however, we hang out in the area as they can't change him yet. We're not sure if they'll ever be able to change him, meaning we have to hang out in the area and only let him stay at school for about 2 to 2.5 hours. We were hoping for the corsette to solve that problem, but probably not for right now. The days have been tougher for Lucas with his skin issues not getting better and just general discomfort. He had a nephrology (kidneys) appt. last week, but Dr. Kaplan, who started out very strange with certain comments for Lucas, ended up giving us and Lucas some encouragement and understanding that Lucas's issues aren't easily solved and probably will never be solved or corrected. He said that there could be issues with his kidneys based on the labs, but there are other issues here that could be causing those results and that overall, there's nothing he can do or recommend. We're still waiting to start the IV for Lucas's bones (insurance is denying covering this) as we had to cancel his dental visit last week due to a virus and heavy congestion. His breathing has not been good the last few weeks. We been giving him 3 breathing treatments a day. The dental visit was for having some teeth extracted as when the IV starts, he can't have any dental work done for a while. Also, we found out that insurance is dropping CHOP out of their network next March, but that's another problem a long ways off. Things can change. That's enough for now. God Bless!
That's all we have to say
WEDNESDAY, August 6, 2008 8:43 PM CDT
UPDATE ON WEDNESDAY:
On Tuesday we took Lucas to the local orthopedic. He spotted on Lucas's lower spine a compression fracture. Thus all the pain he's having when we move him. The morning movement is very painful for him. Today Lucas had a long day at CHOP. We met with the Bone Density Team, Dr. Barsky, a PT and nutrition team. The doctor was very friendly and kind. She got right to point and told us that Lucas' bone density values is the same as a child would have with a very severe case of Osteogenesis Imperfecta (Brittle Bone Disease). Obviously, the years of steroids are the big reason, but we had explained that Lucas has only had 3 broken legs and now the T-11 on his spine. In her opinion, she's shocked to hear he's only had 4 incidents in 14 years. She was also shocked that Lucas receives no medical home care with all his complications. She's seen many families receiving home nursing, etc., with a lot less issues. We explained our insurance situation, etc., and explained that the 2 of us dedicate 24/7 for Lucas. She said we have to live too, but we feel no one would be able to stimulate Lucas with the one last thing in his body that works, his mind. They saw our interaction with him and how much he laughed during the 2 hour appointment. In almost 6 years he's not been left alone without some type of interaction with his family. The PT was very supportive of Lucas and was also concerned about Dad's broken ankle in regards to caring for Lucas down the road. We explained moving Lucas right now is a delicate process and worrying about our aches and pains are not important. Dad is just as stubborn as Lucas. Lucas is in constant pain and he deals with it. To prevent his bone density from worsening, Lucas will start in a few months a Pamidronate IV. This 4 hour IV will be given to him every 3 months and hopefully reverse some of the damage. One of the side effects could be his jaw tightening and kidney issues. We'll discuss this with Dr. Magnussen in a few weeks, but we have to do something very soon. Lucas originally had his BMT labs done first thing and then had to have them done again for a few things Dr. Barsky added. He saw Ginny and Dr. Applenc in BMT and they were very concerned with his skin, but decided not to change any meds this time. We explained that days like this aren't easy, but when the medical professionals show genuine concern and care for your child, it gives you a positive feeling, especially, when they give you encouragement for taking care of him. Dr. Barsky said he's a very complicated medical case. They also added Vitamin D to his meds and tripled his daily calcium intake. We explained to both doctors today that we appreciate their help and understanding with Lucas, but we can't stand when a doctor basically blows you off when they see how complicated he is. It's like they don't hide telling they'd rather deal with much easier cases. To top it off, on the way home, Lucas had a bowel movement and we pulled off the Turnpike at a rest stop and set up shop on the ground. We changed him, but his butt was a bit raw and he cried/moaned all the way home. Fortunately, once home we gave him valium and it seemed to work today and he's now resting comfortably.
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has had many appointments at CHOP the last month with numerous tests. Dr. Magnusson will be seeing us in 3 weeks with all the results and recommendations. At least last week we were home. Tomorrow Lucas has an appt. with Bone Density. Last appt. they sent us to orthopedics and we waited 3 hours in the room, when the chief of surgery came in he explained that they sent us to the wrong dept. as there is a bone density team that Lucas should be seeing instead. Needless to say we weren't happy with the fact that no one picked this up in the dept. that he was there for bone density and they don't do it. What do we know, we show up where we're told with Lucas. At least the day was not a waste as Lucas saw the head of Neurology, Dr, Tenakoon and he was very fond of Dr. Krivit. He didn't want to change any of his meds right away and wanted to stay the course for now. He recommended a 4 hour EEG this month sometime.
Right now Lucas has been having trouble allowing us to get him out of bed without screaming in pain. From his chair to bed we're OK, but the morning is rough on him. We spent yesterday getting X-rays at our local hospital after the Pediatrician saw Lucas. Initially doesn't look like any more broken bones. The Radiologist said that he found the problem, his dislocated hip, but we told him it's been that way for 2 years and probably not it. He was surprised that didn't cause Lucas major discomfort, but he explained that we may have to get him an MRI since something could be pressing on his spine and Xrays wouldn't disclose that. We go today to our local Orthopedic with the films and we'll see what he suggests.
Lucas has been going to school since July 5 and has only missed on hospital days. With moving him a problem, we're back to waiting around school since they won't change him. The seizures have stayed about the same even with raising the Neurotin. It's been hard getting him outside this summer as his skin/GVH flares up immediately if it's too long exposed to the heat. Some nights in the shade it's bearable for him to sit outside and watch the VCR which he enjoys. We tell him if the mosquito's bite him, they'll become giants from sucking out his steroids.
We always hope for the summer to go by fast and wake up Labor day morning. It's cooler and school is back. Abby has been trying to keep busy this summer with dance, mother's helper, and playing with friends. She's been a big help around the kitchen with cutting veggies and food. The Food Network is paying off for her. Our veggie garden has kept all of us busy this summer with an abundance of items. It's been a good thing for all of us to do and the rabbits haven't attacked it yet. For Lucas, we keep him mentally and physically busy. He has very little down time and still laughs a lot. Yesterday in the outpatient lobby, him and Dad were laughing like crazy. We obviously can care less what people think, as long as Lucas is laughing and happy. There's no place or environment that's off limits to his humorous ways. It's what we believe has kept him alive so long and even at CHOP in the Oncology waiting area, he'll laugh and have fun. That's medicine that no pharmacy has on their shelves nor any doctor can prescribe. God Bless!
Monday, June 23, 2008 10:07 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
After almost 6 years of keeping this journal for Lucas, we don't find ourselves running to update as often, even though things are happening to Lucas just as frequently. His care, etc. has become so normal of a daily routine to us, that nothing seems so urgent to write. Several years ago we would have updated 1 or 2 times a week, but we don't see the point that much these days.
Lucas finished school last week and has 2 weeks off until the summer session commences. We gain a little respite by not taking him to school which normally takes about 2 hours a day for us. With the heat and humidity, we try to take advantage of cooler moments to get him outside, but normally we have to keep him in the house. In the house, we play video games and now we have the Wii which has paid for itself already. Lucas has had more frequent visits to CHOP the last month. He had an ultrasound a few weeks ago which yielded that he has slow to moderate movement for urinating which we'll have to meet with the Docs to determine what to do now and the long term consequences. Last week Lucas had a Gastro/Swallow Study where they fed through his G-Tube 8 ozs. of formula and a large scanner studied how it moves through his GI system. It has initially shown he has multiply reflux episodes in his GI but no signs of aspiration. We have to follow up with that. Dr. Magnusen has been scheduling these appointments and will consolidate everyones results. His BMT appointment was after that and they weren't at all happy with Lucas's skin. The few suggestions have already been attempted. He has multiple GVHD spots, rashes and dry skin. The game plan is to apply his creams more often and go with that, but were not lowering his steroids nor upping them. A few of his blood counts were high again, but they don't know why.
Lucas's seizures have been occurring more each day and lasting about 20-30 seconds. We try to shake him out of them but he'll only come out of it when his brain wants to. We upped his seizure med Neurotin and will monitor that.
Lucas had his prom a few weeks back and we all went. It was a terrific night for all. As with anything Lucas goes to after 6, we have to bring his feedings, meds and pray that he doesn't have a bowl movement. His bottom can get very sore if he's not changed quickly. When we travel to CHOP, we used to pull off the highway and set up the van to change him. Since his broken legs, that's not feasible anymore. We have to find a place to change and can't wait during the 2 hour trip it takes. Our friend Kevin with the NJ State Police has insisted that wherever we are with Lucas's that we contact him and he'll have a trooper come out and take us to the nearest barracks or police station. We just need a desk or table to make sure we don't cause further breaks.
On another note, Mom and Abby spent 5 days in Miami at Uncle Russell's wedding. They had a great time and a well deserved break. Dad stayed home with Lucas in the heat wave, basically just staying in the house. Abby finished the year with straight A's and made the honor role again. A fantastic accomplishment considering all the distractions with us taking care of Lucas. Unfortunately, Abby had a different type of learning experience the other day. She's done so well with Lucas and accepts that Mom and Dad aren't always there for her as much, but she deals with it. Mom's very good friend was in the hospital with cancer related pneumonia. Mom and Abby picked up her daughter for a break for her and time with Abby. She needed shoes for a wedding so they were off to the mall. While in Payless, Abby put her purse down and turned around and it was gone. She lost her phone and money. You think about how crap happens and it happens fast. But, we hope she learned a priceless lesson in that some people are good, but most will steal the shirt off your back if given the chance. We want her to learn to look out for herself and always be alert.
Godspeed!
TUESDAY, MAY 13, 2008 7:50 AM CDT
HAPPY BIRTHDAY LUCAS - MAY 13! 14 YEARS OLD! LUCAS HAD A GREAT BIRTHDAY WITH FAMILY, FRIENDS & LOBSTERS. GOD BLESS YOU SON!
MARK YOUR CALENDAR FOR "ONE STEP CLOSER" WALK IN OLD BRIDGE, NJ @ HIGH SCHOOL'S LOMBARDI FIELD ON SAT, MAY 17 AT 1:00. REGISTRATION FEE $10.00 INCLUDES T-SHIRT. ONLINE REGISTRATION HTTP://WWW.STENNISFOUNDATION.ORG OR GIVE US A CALL ABOUT SPONSORING US IN THE WALK. MAKE ALL DONATIONS TO STENNIS FOUNDATION.
Lucas had his 4 week visit to CHOP and we met with Dr. Magnosen the Diagnostic Specialist there. Lucas's BMT visit went well and they were extremely pleased with his skin and it was decided to lower his steroids. Lucas has been at this point before and we may park him there for a while. I don't think they want to push it any lower as we've done in the past. After 5 blood pressures, his lower number wouldn't go below 90 and we raised his Norvasc to compensate. We then visited with Dr. Magnosen. He didn't really examine Lucas as his role is to evaluate Lucas's situation and try to put things in motion for better results. His overall feeling about what he could do for Lucas depends on his prognosis. He discussed our taking him to the Pulmonology Dept. to do a sleep study with Lucas and to see how his breathing is at night time. They could decide to have Lucas wear a mask for oxygen at night to prevent his Apnea. He also suggested that they do a swallow study to see if he is aspirating. Also, he wants us to see Urology to determine if Lucas's blood pressure concerns are the result of urinary retention. When Lucas's bladder fills up too much and doesn't go for 10-12 hours, it puts pressure on the kidneys which could cause high blood pressure. We may have to catheterize him before he retains too much. But before we can address these concerns, he wants to locate a neurologist (whether at CHOP or hopefully not to far away) who is familiar with MLD and who can study Lucas's history to date and give us a prognosis to determine if the quality of life issues we must deal with right now make those procedures worth it. He doesn't want to jump right in and say let's do this and that without really thinking it through if the benefits to Lucas aren't best for him right now. It may not be worth pursuing all those avenues. We're not sure if such a neurologist exists within 500 miles, but he'll let us know. Lucas struggled to make the trip to NIH Wash, DC last year, but tripling that distance is a major concern. An airplane is not an option for Lucas with his spasms and no immune system. We went back to BMT and filled them in with the meeting and we'll just wait and see what he comes up with. CHOP's not waiting for things to get worse and then have to figure out what to do.
THANK YOU FOR CHECKING IN ON LUCAS!
It's been a while since our last update, mainly due to tax season and the busy, long days on top of it.
On March 18, Lucas had is periodic Botox treatments with Dr. Armento at Beth Israel in Newark. Mom discussed his feet and how swollen they have become, but Dr. Armento said there isn't anything we can do to relieve the tightness or pressure he feels. All we can do is to keep having him wear his compression socks. We were concerned that his breathing problems could be an issue for the anesthesiologist and fortunately Lucas has had the same 3 anesthesiologists there for his 14 procedures with Dr. Armento and he didn't feel it was too erratic for him to go under. Although, he did say he could never forget Lucas as he said certain patients you learn about and they just stick in your mind and a patient with Metachromatic Leukodystrophy, will stick in your mind. He did very well through the procedure and woke up right away and we were heading home in 1 hour.
Lucas had his visit to CHOP on April 1 and his blood pressure was fine and he weighed 78 pounds. The dietician met with Mom and has been very helpful and assertive with ideas for Lucas. When the docs came in, we conveyed our concerns about certain aspects of Lucas's life that are not changing for the better. He is having more frequent and longer lasting seizures. Our rousing him and shaking may take about 7-10 seconds or longer for him to snap out of it. His muscles seem weaker, even with the PT he receives, as he is hanging his right arm more and not keeping it upright. His left arm is still contracted and he'll never straighten it out. With his breathing being more erratic, some nights we have to watch him closely, but the Veramyst spray we are giving him is helping. He is over all more tired and just not with it at school and those bursts of laughter and excitement aren't as frequent. After discussing his meds, etc., it was suggested that we see Dr. Mark Magnossen at CHOP. He heads up a department that specializes in difficult, intricate cases with rare diagnoses, and he tries to bring all the disciplines under one roof to determine if there are any drug interactions of concern or anything else we could be doing. His specialty is pulmonary which is where we feel Lucas is developing some problems. Lucas ENT, Dr. Tavel, who checks his passageways once a month knows of Dr. Mark and said he is an excellent, well respected doctor. That's good to hear. We see him on April 30 and the BMT staff also booked Lucas in before and after that appointment so that we convey his ideas, plus save another trip in 5 days.
We've been taking Lucas to school practically everyday, and more and more the report is that he's tired and seems bored.
Maybe with some field trips coming up, he'll perk up a bit being out of the classroom. With the weather getting warmer, we try to get him outside on the deck and set up the TV and VCR which he enjoyed last year. The last 4-5 days were perfect weather and he enjoyed it outside. One other item to note, as of right now the insurance company has stopped covering Lucas's feedings and passed that responsibility on to us. We figure it will run about $3,000 a year and we've appealed it. Each year they seem to tweak some cost over to us while increasing our premiums. That's that!
At the end of this week, our 2 weekly meals provided by friends in town will stop. Mom spoke to Michele Carrano, who has organized the meals for us the last 2 years, and said with the busy season over and Dad available, we can manage on our own with grilling and having Lucas outside with us. We especially appreciated everyone who dropped off meals the past 3 months as it meant about 3 1/2 days of not cooking with the leftovers. To not worry about cooking for half the week is priceless during this season. As brutal as tax season can be with just a normal life, it's extra difficult with caring for Lucas and keeping Abby going too. We have to deal with that 3 months so that the other 9 aren't so hectic and our teamwork can care for Lucas and spend time with Abby. When someone would bring the meal to the front door, we'd always invite them in and ask them to visit with Lucas to see why all of this is happening. Thank you all again. God Bless!
Thursday, March 6, 2008 9:51 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
February was a long month, considering it's the shortest. Lucas, Mom and Dad all had the flu (so much for the flu shot) and Dad added pneumonia (thank God for Lucas's Nebulizer/Albuterol which staved off going in the hospital for him) just in time for his busiest part of tax season. Luckily, Abby hasn't gotten anything or brought anything home and Lucas managed to get through his bout with the flu. As we had mentioned last time, they weren't very happy that we didn't take him to the ER, but he got through it. Lucas's left broken tibia has healed, but the X-rays disclosed that he had probably broken his left femur also as it showed some bad bruising. We joked with Lucas that if he breaks his lower right leg, he will have broken both of his legs at the femur and tibia. Not sure how or when he broke his left femur, but he's back at school without us having to wait around in case he had a BM or urination. Through the rest of the month, Lucas had some nights where he would wake up 4-5 times and just couldn't settle. His nightime breathing was very eratic and a concern and we would check in on him. But, over the last week he's been doing better.
Lucas had his 4 week visit to CHOP on Tuesday. His blood pressure was the best it has been in 6 years 110/71. Upping the Norvasc sure did help. His weight is at 78.5, very good. Mom discussed his feedings with the Nutritionist at CHOP and tried a different type of pre-digested feeding, but Lucas had 9 BM's over the next 2 days so we went back to the original feeding. On Tuesday, we decided to keep his regular Nutren feeding with less feed in the morning and adding more water during the day. He's been Ok the last few days and we're actually getting him to school earlier. His labs looked fine and his skin is looking great. We agreed to lower his steroids a few mls and see how it goes. One of our discussions was that we sense Lucas is not as alert recently and seemingly more agitated with things and not willing to do certain things or listen especially at school. They tell us more and more that he just zones out in class unless something really interests him. And we feel that is where the MLD has come back into play. He just doesn't seem as alert lately and more tired. When we eat supper, we bring Lucas out to the table. Our supper conversations are filled with crude humor and jokes and pranks and Lucas loves it. It seems like he looks forward to it and it gets him going. Lucas loves our conversations about Beef Stew, Dunkin Donut trips, 13 buffalo wings, Pop's work shoes, Tony Capesi, Santa Claus @ 3:00 a.m., Dad's teachers, moles, etc. This might not make any sense to anyone, but these types of Lucas folklore as we call it have kept Lucas's mind working and remembering and most of all laughing. At Costco when we're getting closer to the stew, beans and chilli, he becomes excited, sometimes too excited causing him to have a BM, but his juices rise and bring out so much laughter from it that few people walking by get it, but most appear to have a lima bean for a brain and just don't get it.
We discussed his lack of an immune system and the fact that he's at school, etc. It comes down to common sense and luck. He got through the flu and severe congestion/breathing problems. They really can't explain medically how he's been able to fight off so many things, other than his will power and determination. Mr. Feinberg respiratory therapist at Kessler and our friend, saw Lucas yesterday and felt he looked very good and his lungs sounded great. He understands the down turns mentally for him sometimes, but compared to 4 weeks ago, physically he looks great.
We must again thank all the families and friends in town for dropping off meals on Tues and Wed and Eddie's bagel run on Sundays. We usually receive so much that it carries us to Thurs and lunch, so 3 days of meals during this sick and busy time of year is priceless and also delicious. People have also dropped off gift cards and with tax season here, many of Dad's clients generally leave 2 checks, one for Dad and one for Lucas. We feel very fortunate that after all these years, people are still helping us in so many ways and it's that help and generosity that enables us to give Lucas the care, energy and love he needs. As a friend said, when you live your lives putting others first and yourself second, it's times like this that you can see the rewards from your sacrifices. There's nothing to stop those moments of remembering Lucas before all of this and some days seeing kids play and thinking back of how much he enjoyed being outside, but those burdens are eased with love and support from our community. God Bless
Thursday, March 6, 2008 9:51 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
February was a long month, considering it's the shortest. Lucas, Mom and Dad all had the flu (so much for the flu shot) and Dad added pneumonia (thank God for Lucas's Nebulizer/Albuterol which staved off goint in the hospital for him) just in time for his busiest part of tax season. Luckily, Abby hasn't gotten anything or brought anything home and Lucas managed to get through his bout with the flu. As we had mentioned last time, they weren't very happy that we didn't take him to the ER, but he got through it. Lucas's right broken leg has healed, but the X-rays disclosed that he had probably broken his left femur as it showed some bad bruising. We joked with Lucas that if he breaks his lower right leg, he will have broken both of his legs at the femur and tibia. Not sure how or when he broke his left femur, but he's back at school without us having to wait around in case he had a BM or urination. Through the rest of the month, Lucas had some nights where he would wake up 4-5 times and just couldn't settle. His nightime breathing was very eratic and a concern and we would check in on him. But, over the last week he's been doing better.
Lucas had his 4 week visit to CHOP on Tuesday. His blood pressure was the best it has been in 6 years 110/71. Upping the Norvasc sure did help. His weight is at 78.5, very good. Mom discussed his feedings with the Nutritionist at CHOP and tried a different type of pre-digestive feeding, but Lucas had 9 BM's the next day so we cut that out. On Tuesday, we decided to go back to his regular Nutrin with less feed in the morning. He's been Ok the last few days and we're actually getting him to school earlier. His labs looked fine and his skin is looking great. We agreed to lower his steroids a few mls and see how it goes. One of our discussions concerned that we sense Lucas is not as alert recently and seemingly more agitated with things and not willing to do certain things or listen especially at school. They tell us more and more that he just zones out in class unless something really interests him. And we feel that is where the MLD has come back into play. He just doesn't seem as alert lately and more tired. When we eat supper, we bring Lucas out to the table. Our supper conversations are filled with crude humor and jokes and pranks and Lucas loves it. Lucas loves our conversations about Beef Stew, Dunkin Donut trips, 13 buffalo wings, Pop's work shoes, Tony Capesi, Santa Claus @ 3:00 a.m., Dad's teachers, moles, etc. This might not make any sense to anyone, but these types of Lucas folklore as we call it have kept Lucas's mind working and remembering and most of all laughing. At Costco when we're getting closer to the stew, beans and chilli, he becomes excited, sometimes to excited causing him to have a BM, but his juices rise and bring out so much laughter from it that few people walking by get it, but most appear to have a lima bean for a brain to don't get it.
We discussed his lack of an immune system and the fact that he's at school, etc. It comes down to common sense and luck. He got through the flu and severe congestion/breathing problems. They really can't explain medically how he's been able to fight off so many things, other than his will power and determination. Mr. Feinberg, respiratory therapist at Kessler, saw Lucas yesterday and felt he looked very good and his lungs sounded great. He understands the down turns mentally for him sometimes, but compare to 4 weeks ago, physically he looks great.
We must again thank all the families and friends in town for dropping off meals on Tues and Wed and Eddie's bagel run on Sundays. We usually receive so much that it carries us to Thurs, so 3 days of meals during this sick and busy time of year is priceless and also delicious. People have also dropped off gift cards and with tax season here, many of Dad's clients generally leave 2 checks, one for Dad and one for Lucas. We feel very fortunate that after all these years, people are still helping us in so many ways and it's that help and generosity that enables us to give Lucas the care and love he needs. As a friend said, when you live your lives putting others first and yourself second, it's times like this that you can see the rewards from your sacrifices. There's nothing to stop those moments of remembering Lucas before all of this and somedays seeing kids play and thinking back of how much he enjoyed being outside, but those burdens are eased with love and support from community. God Bless
Tuesday, January 29, 2008 4:15 PM CST
UPDATE FROM TUES 2/5 VISIT TO CHOP: Lucas had his visit to CHOP and he's been having problems with congestion and moving it. He had his broken leg and dislocated hip X-rayed again, no results yet. His blood pressure was high on 2 readings and they upped his Norvasc. They ordered a Nebulizer machine and a script for Albuterol. Unfortunately, last night his breathing was awful and we slept with him through the restless night. A family friend Mr. Feinberg, a respiratory specialist at Kessler Inst. stopped by last week to check his lungs and we called him last night. He told us what to do and he called back 6:30 am to check in and we believe we calmed things down by suctioning out some gunk from the back of his throat. He's still home from school and we're keeping a close eye on him.
THANK YOU FOR CHECKING IN ON LUCAS!
The last several days have been very rough on Lucas. He still has a broken left leg and he's spiked several fevers on top of having a hacking cough. He's obviously not feeling good right now, as are Mom and Dad with a similar yucky feeling and cough. Dad got away with the Little Silver gang to upstate NY on Friday for his annual 2 days off, but Mom and Lucas came down with something on Friday after he left. Friday evening, Lucas spiked a fever and Mom took Lucas to his Pediatrician Saturday morning. His lungs sounded clear and he put him on Zythromax. Saturday night his temp. went up to 103 (anything 101.5 or higher we have been told means the ER for Lucas), but with Dad not home and Mom feeling miserable, she road out the storm at home. Dad came home first thing Sunday morning, but Lucas' fever was pretty much under control. Mom called Ginny at CHOP and she was not happy that Lucas wasn't taken to the local ER, but this happened last summer and we were given the OK to stay home and monitor it then. Our feeling is that at this point of the game, we risk more infection, etc. if we take him to the ER unnecessarily and we feel we're just as capable of dealing with this type of situation at home. Obviously, if his fever hadn't subsided in 24 hours with Tylenol, Advil and cold compresses, we would have taken him right to CHOP. Being on immune meds and having no immune system still puts Lucas at severe risk of infections that could be fatal.
Lucas has been waking up about 3-5 times a night and he's been more agitated lately. With his broken leg, we've still been getting him to school for 1-2 hours a day, but this week we're keeping him home. We've been with him more and more lately and it's probably why we both came down sick. You accept that rest and relaxation is long gone and sleeping through a night happened more when both kids were babies, but you find a way to give Lucas the attention and care he needs. With tax season here, it takes team work and understanding to take care of Lucas. The steroids show their ugly side when Lucas isn't entertained enough or just having a commercial come on. We'd have to rate January as a down month for him and hope that Lucas can reverse this trend in February.
On another note, we're getting our driveway repaved and reshaped. Those who know the house, know the driveway is steep and cracked and a challenge for Dad to maneuver let alone Mom trying to push Lucas into the garage. The 1 or 2 times a week Dad isn't home, Mom was starting to back into the driveway, but living on a busy street, she was finding other drivers impatient and not cooperating with her backing in. Drivers on our cut through street aren't courteous and speed. So we're cutting out the sidewalk and bushes and paving that area. This way she can pull the van in sideways and pull Lucas's ramp down on a much lesser incline and then go right into the garage ramp. This will make it safer and faster for Lucas.
We'd like to thank the families in our town for again starting with the weekly meals. Obviously, Lucas can't eat, but that particular night we have one less chore. God Bless!
Tuesday, January 8, 2008 7:57 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We hope everyone had a great holiday season and Happy New Year! We first want to thank everyone who sent well wishes to Lucas, cards, gift certificates and donations to The Lucas Fund. We are truly humbled that after 5 years, many people continue to support Lucas and his constant medical expenses.
Today was Lucas' monthly checkup at CHOP. It took us almost 4 hours to get there, but Lucas was entertained with DVD's. But first, last week in moving him through the house in his wheelchair, his left leg some how caught the couch and was pulled outward slightly. He cried and it was difficult moving him into bed. We again put on his immobilizer to be on the safe side and gave put him on Aleve for a few days. Moving him was not easy and he would scream if it bothered him the last several days. Dr. Aplenc and Ginny saw Lucas today along with Dr. Horowitz. They weren't very happy with his skin and GVH, but they didn't feel it had gotten worse since his last visit. We asked to check his left knee as it has puffed up the last few days. We explained that Dr. Flynn at CHOP orthopedics told us last time that we may have jumped to conclusions in requesting Xrays after Lucas' last broken leg when something was bothering him. Dr. Flynn commented that we should be cautious with Xrays so that Lucas doesn't start glowing. We were not too happy with this comment. The BMT staff said that would be the least of Lucas' worries and if an Xray is warranted, he should have one, so Dr. Aplenc wrote the orders for an xray.
We went down to Radiology and had a few Xrays of his left leg. As we were waiting to leave, Ann and Dr. Aplenc approached us and said that they hate to say it again, but Lucas has another broken leg. He's got a crack just below his left knee, where the puffiness was. They immediately explained that we have to expect this to happen and it will probably happen more and more. There's no way to reverse the damage that has been done even with added calcium. His bones are very brittle and since we can't lower his Steroids, his bones will continue to deteriorate. Lucas' body needs the steroids, but his bones don't. His labs looked good and his weight is down to 78 pounds which is good. The other news is that his 2 Prevnar vaccines he received never took or is not in his body. He was scheduled today for another Prevnar vaccine, but it had to be canceled. There are only 2 vaccines he is eligible for right now as he is still on immune suppressants. Ann explained to us why, but simply put in English, Lucas' metabolic structure can't absorb any vaccines. Until certain counts reach certain thresholds, the vaccinations for Lucas are a waste of time. He is very highly susceptible to infections and germs as his immune system is still compromised after 5 years.
We asked how Lucas has been able to go 5 years with a compromised immune system, going to school, the mall, etc. and still manage. Dr. Aplenc and Ann explained the care he gets at home and the caution used at school, i.e. letting us know of sick classmates, masks, gloves, etc. and washing hands a lot has helped. Using common sense helps and staying home a lot helps. We can only hope that things continue this way for Lucas' sake.
The steroids still cause him to be very moody and less patient. We're used to his moaning and hating commercials. Abby has been helping Lucas out tremendously and playing video games, his communication device and just good old jokes to keep him going. It's been 5 years since Lucas receive his transplant. With the winter here, we can't wait for spring to come and get him outside a bit more. God Bless!
WED, DECEMBER 5, 2007 8:13 PM CST
QUICK UPDATE: LUCAS HAD HIS VISIT TO CHOP ON TUES. ALL THE XRAYS DID NOT SHOW ANY FRACTURES OR BREAKS. DR. FLYNN COULD ONLY THINK THAT HIS DISLOCATED HIP IN INFLAMED AND ALL WE CAN DO IS GIVE HIM ALEEVE & TYLENOL. WE REMOVED THE CAST AND HE'S STILL APPREHENSIVE WHEN WE PICK HIM UP. UNFORTUNATELY,HE'LL JUST HAVE TO GET USED TO IT AND DEAL WITH DISCOMFORT. NOTHING HE HASN'T DONE BEFORE. WE MET WITH DR. HOROWITZ FOR BMT VISIT. IT WAS A PRODUCTIVE MEETING AND HE SHED A FEW IDEAS WITH LUCAS'S GVHD THAT WE WILL TRY WITH GETTING THE STEROIDS LOWER. EVERYTHING ELSE WAS STATUS QUO. ONE NOTE, IN THE XRAY WAITING ROOM WITH ABOUT 30 PEOPLE, SCOOBY DOO WAS ON TV AND LUCAS WENT INTO HIS FAMOUS LAUGH AND HE HAD THE PARENTS AND OFFICE STAFF LAUGHING TOO. IT WAS A GREAT MOMENT SEEING HIM LAUGH SO HARD. HE CONTINUED THAT IN THE BMT AND THE STAFF ARE USED TO HIM LAUGHING IN THE WAITING ROOM.
IN MOVING LUCAS AND TRYING TO GIVE HIM A SHOWER WED, HE WAS IN TREMENDOUS PAIN AND WAS CRYING. HE TRIED TO POINT TO HIS RIGHT LEG AND WE BELIEVE HE MAY HAVE RE-BROKEN HIS LEG AND HAVE HAD TO PUT THE IMMOBILIZER/BRACE BACK ON. CHOP WANTS US THERE EARLY NEXT TUESDAY DEC 4 FOR MORE XRAYS AND FOR HIS BMT CHECKUP AND TO KEEP THE BRACE ON. WE HAVE HIM HOME FROM SCHOOL RIGHT NOW.
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas had his regular 4 week visit last Tuesday at CHOP. First stop was to Radiology and Orthopedics with Dr. Flynn. The Xrays actually showed that Lucas's broken right leg had healed just fine. It was terrific news because at first we weren't left with a great impression that it would properly heal due to steroids and the other issues Lucas has. Dr. Flynn gave us the go ahead to keep the leg brace off and start things very slow with PT, etc. The entire time Lucas had the brace on, his school couldn't change him for BMs or anything, so we took him to school for 2 hours a day and waited in the area rather than come home and go back. He's now back to school regular hours. Dr. Applenc and Ginny at BMT were glad to hear the news and a little surprised that it had healed so well and so fast. The rest of the visit went well with us lowering his steroids a little bit as his GVHD is still showing up all over his body. They'd like to keep him at the levels he at right now through the winter.
During the time Lucas had his cast on, it was very difficult moving him as we hoped nothing else would break and that we would not disrupt the healing process. We gave him showers without the cast, but he did manage very well through the whole time. Lucas actually lost a few pounds down to 80 since last visit and that was good news. We're trying to manage his weight and nourishment to keep it on the low end. Every so often the spasms hit him and only time stops them; valium doesn't help anymore. He's still getting about 3 to 4 seizures a day, but we feel the Neurontin is working very well for that and his overall alertness. He's been taking his Bactrim twice a week and so far so good. We don't want to go back to the Pentamadine infusions and overall he deal's with a little diarrhea on those days, but nothing C-Diffish to get concerned about.
He's been urinating more regularly lately and we haven't had to catheterize him since last update. He had some work done on his wheelchair to conform more to his twisted body. Lucas has been receiving augmentative speech therapy at home at our expense and we're trying more and more to put the device in front of him to try and tell us want he wants. He's still very inconsistent but trying. Lucas had his Botox appointment canceled last month due to his leg and we go next Tuesday to Newark Beth Israel to see Dr. Armento.
Mom went to the MLD conference in Boston and met other families and the doctors from the various hospitals working on MLD. She met Dr. Wenger (Dr. Krivit sent us to him to test for MLD) from Philly's Jefferson Medical College and he remembered Lucas and our family. He told Mom he remembered her and Lucas because he never had a family hand deliver to him personally all 4 family members blood and urine samples. It was a tough experience for Mom seeing the other families there with their children, especially the very young ones. They were interested in how Lucas was doing and the main thing she could convey about Lucas is that he's still somewhat coherent and alert. She said Dr. Krivit's hope was that at least the BMT could maintain that to some degree for Lucas. She learned that Lucas's BMT protocol is no longer used as the chemo drugs Busulfan and Cytoxin were too toxic for the MLD patients. Lucas, Nathan, Max and other kids who had transplants to stop the progression all contributed to what they now know today and that future BMT recipients have and will benefit from their sacrifices. It was a very good source of information and discussion, but mainly what came out of it was who will probably benefit from any future research or trials and it's all too far along for Lucas to ever be involved.
The days go on for Lucas. He still laughs a lot and our family humor and joking around is still his best medicine. We come up with occasional crude humor or just something we see on TV or something that happened earlier in his life to get him going and most of the time it works. We relentlessly keep working his memory and there's no down time. Abby has been so special to Lucas and being there for him. She's doing so well in school considering the time we have to give to caring for Lucas. We want to wish everyone a Happy Thanksgiving and please remember in your prayers and thoughts those children who struggle each day like Lucas to survive and their families and those children who have passed on and their families. God Bless!
Tuesday, October 9, 2007 9:02 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
UPDATE! TOOK LUCAS TO CHOP TODAY FOR HIS ORTHOPEDICS VISIT. DR. FLYNN BELIEVES THE BREAK OCCURRED SOMETIME BEFORE WE HEARD THE CRACKING NOISE. NORMALLY WOULD REQUIRE A BODY CAST FROM HIS HIP TO HIS ANKLE, BUT NOT IN LUCAS'S CASE WITH GVHD. TOLD US TO KEEP THE LEG BRACE ALL THE TIME FOR 3 WEEKS AND COME BACK FOR XRAYS ON LUCAS'S NEXT BMT VISIT. THAT WAS IT. HE SAID DUE TO HIS WEAK BONES, HIS DISLOCATED HIP PROBABLY CAUSED THE BREAK TO OCCUR.
Lucas had his visit to CHOP. It was 6 weeks ago today that he had his last visit. Last Thursday, when we were getting him ready for school and moving him, we heard a reasonably loud cracking noise somewhere from his body. He seized up, turned white and gasping for air. We kept him calm and after about 10 minutes he settled down. We contacted CHOP and were told that he have to have Xrays done when he comes in. Today, they took several pictures from his hips to his knees. We know his hip is dislocated and his knee joints have been bothering him, but Dr. Aplenc walked in the BMT room with a leg brace and we knew something was bad. Lucas broke his leg about 2 inches above his knee. It's a straight crack right across his leg. We've been extra specially careful with him the last few days, but certain movements would cause him to stiffen up and moan with pain. Normally, surgery for his type of brake is required, but not in Lucas's case. As with all the other physical problems, there's nothing we can do except keep him comfortable. Dr. Aplenc and Ann weren't surprised and stressed that it wasn't our fault. It was just a matter of time with his horrible bone density that things were going to happen. He needs the steroids as his GVHD has been flaring up again and we must keep that under control, but at the expense of possibly seeing him brake more bones.
His other problem has been the infrequency of his urinating. Sometimes he may not go for hours and today we got a refresher lesson in straight-catheterizing him. They wanted to make sure we handled the sterilization procedure properly. There is a risk for bacteria infection for him and better to be safe and cut down on that risk. Lucas weighed in at 81 pounds and they had the Nutritionist meet with us. She recommended we crush some vitamins in his feedings. They are very concerned that we keep his weight under control and keep trying to find the optimum calorie intake that keeps him nourished. It was a long day and we'll probably have to go back to see Dr. Flynn in orthopedics. BMT wanted us back in 4 weeks, no more 6 weeks without a visit. They kept his steroids and immune suppressants the same for now.
Lucas is still laughing and cracking up at cartoons and jokes. Even after the news of his broken leg, we joked with him that he now joins Daddy with his broken pinky. They watched him today tough it out. He still blows kisses to the girls and finds humor in so many things. We joke with him that he got all the courage in the family and we're left with nothing. He still gets a few seizures a day and we keep raising the Neurotin. Lucas has his Botox injections next Tuesday in Newark with Dr. Armento.
Mom is leaving next Thursday for the MLD conference in Boston. She's traveling up with a family from North NJ. The dad is a doctor and had a BMT at the Univ of Minnesota 6 months ago after being diagnosed 8 months ago. Mom has been in contact with his wife, who is also a Physiatrist and worked under Dr. Armento. She's looking forward to attending her first conference for MLD and sharing Lucas's story and gaining information from other parents and doctors. On that Saturday Oct 20, Gethsemane Lutheran Church is having a spaghetti dinner fundraiser for Lucas at the Church. We're assuming it will be around 6 p.m. and Dad, Abby and Lucas are going. They have always been there for Lucas. The generator is finally in and running. A lot of thanks goes out to Brian Mitchell for handling all the permits and setting up work, Clyde Snyder and his crew from Albright Electric in Point Pleasant Beach for their help putting it in, Pete/Tom/Anthony/Central Jersey Mechanical in Long Branch for doing the plumbing/pipes and Mr. Waurshauer from Waurshauer electric for selling the unit at cost to us. The fundraisers at the Ye Olde Pie Shoppe and donations by the Peninsula Soccer Club more than took care of the costs with some left over for medical bills. It's a great peace of mind to here that machine go on when they were testing it and knowing that we won't have to move Lucas if we lose power. It was a long process, but well worth it. Also, thank you to the Evonosky Foundation and Will Wong for running for Lucas in the Chicago Marathon. It was a brutally hot day and we want to commend Will's efforts.
We had to mention that on September 23, it was Lucas's 5th year since his diagnosis. The simple, best way to put it is that he's still with us, fighting and putting up with so much that we're grateful for each and every day with him. We remain determined to keep his laughing, as pain free as possible and give him the best quality of life we can. He loves his sister and they have forged an incredible bond. God Bless!
Friday, September 7, 2007 7:20 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has been taking Bactrim now for about 6 weeks. He had his checkup at CHOP on August 28. It was 4 weeks since his last visit and we were glad to tell them that he's been reacting well to the Bactrim and although he's had off and on diarrhea, we didn't feel it was anything close to smelling or looking like CDiff. They were still concerned with his skin and flareups, but nothing to get alarmed at this time. It was decided to keep the steroids at 30 mgs alternating 0 every other day. The Protopic seems to clear up the rashes, but the lowering of the steroids has had Lucas getting more annoyed and aggravated with commercials or with being in an environment he doesn't like. After the last visit to CHOP, they decided that Lucas doesn't have to come back for 6 weeks. It took a few days for that to sink in as he has basically never gone more than 3 weeks without a hospital visit in the last 5 years. Lucas weighed in at 81 pounds and they told us to cut out one can of Neutron from his daily feeds and to add 300 mls of water.
They didn't like the look of his right toe and put him on another antibiotic and recommended that we see a local Podiatrist. We visited Dr. Connors right down the street and he was intrigued with Lucas's condition and wellbeing. He pulled out a big piece of his nail from his big toe and that was that. Lucas didn't even budge or flinch. He wants to see him on a regular basis to keep an eye on his feet. Lucas had a successful visit to the Dentist and had 3 teeth pulled out. His teeth in general are very good and nothing really goes in his mouth except for the toothbrush and an occassional sucking of shrimp. He still grinds them a lot.
We had a visit a few Sundays ago from Will Wong and his family. Will is running for Lucas in the Chicago Marathon and representing the Evanosky Foundation for Leukodystrophy Research and Awareness. It was a nice visit and Lucas was given a few Cub items. He wears his Cubs hat all the time now. The generator is still on hold due to the permits, etc. It's been rather frustrating getting the OK even with the help of our friend Brian who trains code/building officers. In any event, the electrician and plumbers said they could be ready on a day's notice and the unit is already here. Can't wait until it's all over.
The kids are back to school and getting into the swing of things. Abby is in 5th grade and doing well. Lucas is in the same class and only a few of the kids aren't back. He did have a big seizure at school, but overall we feel the Neurotin is working and helping him with the pain and sleep. Overall, Lucas is still alert and coping as well as he can. He did have a 4 hour spasm a few weeks ago, just when we had said he hasn't been getting any spasms lately. Nothing you can do when they occur and he just deals with the severe pain until his body tires out. Godspeed!
Sunday, July 29, 2007 3:23 PM CDT
Thank you for checking in on Lucas!
We've tried a few times to sit down and update, but we sit in front of the computer and just can't get the thoughts to the keyboard, but today's rain and humidity helped us sit down and get it done.
A few changes have taken place with Lucas's medications since last update. Lucas has had 2 visits to CHOP since last time. A decision was agreed to by all of us last Tuesday to stop the Pentamidine IV's and to give Bactrim another try. The reason for Lucas getting this IV the last 2 years was the belief that his body could not tolerate Bactrim. He would get extremely bad stomach cramps and diarrhea for the days that he would take Bactrim. So we decided to skip his IV and we headed home about 2 hours early. The Bactrim must be given twice a day and twice a week. Lucas had his first doses on Thursday and today. Only today did his BM's look diarrheish, so we'll have to keep a close eye on him the next several days. We also lowered his steroids slightly to 30 mgs every other day and 5 mgs the other days. His prograf level was high, so that medication was lowered to 1.5 mls 2 times a day. His skin has flared up with some rashes but we are supposed to put Protopic Cream on and stay with the regiment for now and see what happens in a few weeks. We booked his next appointment for 4 weeks, (its better than every 3 weeks) and hope to lower his steroids then to 30mgs every other day with none the alternating day. We then hope to plant him there for a while and may look to start weening him off the cellcept (immune suppressant).
Lucas has also been on Neurontin the last 4 weeks and he's been doing pretty good on it. It seems like he's sleeping more through the nights and better rested during the day. He still gets a few seizures once in a while, but we are glad they have decreased and he's not that groggy from taking the medication. He's gone to school everyday possible except for hospital visits and his 1st day of Bactrim. He's still alert, gets agitated with TV commercials (steroids contribute to that) and will moan until we change the channel. This time of the year it is difficult because of the sun and the interaction with the Meds causing issues with his skin to get out for any extended period of time, but we've been to friends and other places on some muggy nights and as long as he's had his DVD player, he's hung in there pretty well. Lucas now weighs 80 pounds and we're trying to control his weight through his nutrition and water intake. He's still getting PT about 3 times a week, wear's his body vest and leg AFOs each day, and we try to shower him more often to keep his head from drying out.
The Power Jam at Tom and Eileen Caruso's Ye Ole Pie Shoppe in Little Silver was a huge success. Their son TC organized it and people stopped by during the 4-5 hours to listen to the music, see Lucas, buy some baked goods or just make a donation. We'd like to thank all the bands who performed and it was a fun night. Lucas stayed the entire time and seemed to enjoy everyone visiting. As of right now, enough money was raised to take care of the generator and its installation. Jim Warshauer of Warshauer Electric sold us the unit at cost with delivery and set up. Clyde our electrician showed him Lucas's website and he wanted to help. We're just waiting on the permits to come back, the space was laid out by our friend Brian Mitchell who put together the jacket for the permits, etc. also. Once again a lot of people have helped out in making our efforts to care for Lucas that much easier. We also must thank Michele and Eddie Carrano for again organizing the meals and dropping off bagels every Sunday. Each Sunday morning on the front door we find 3 bagels that gets our day started. Abby calls it "Bagel Sunday." Also, Abby has been keeping busy this summer with playdates, working at the Farmers Market in Red Bank with our old neighbor Mary Kiningham, helping out the neighbors with their kids (mother's helper) and spending time with her Grandparents. She starts 5th grade this year and will be walking to school down the street. She's not playing soccer and Dad's not coaching so we're looking forward to our weekends this fall.
There have been a few fundraisers for MLD and research going on right now. Rhonda Francheseur (Nathan's Mom) had a jewelry sale from Texas. Also, the Evanosky family has a team of runners who are running in the Chicago Marathon for MLD research. As you can see, many events are still going on for MLD and it is very important as we are still learning of children getting diagnosed each month with this devastating disease. We appreciate all of your help and prayers and for giving us the strength to take care of Lucas each day. It truly does make a difference in our lives and gives us hope knowing that so many people care about Lucas. God Bless!
Wednesday, June 20, 2007 8:34 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas and Abby finished school today. Lucas is off for 2 weeks and starts up again for the summer.
Mom and Abby had a great time in Disney and we're excited to come home. Thank you to Larry and Joan O'Connell (Lucas's preschool teacher) for bringing them home from the airport. Lucas was in no condition for the ride to the airport and they didn't hesitate to pick them up. He was excited to see Mom and Abby.
The final report came in from NIH. It was held up as they had contacted the St. Louis Cord Blood Bank in hopes of finding out some information about the donor. They wanted to verify if the donor or any family members suffered from chronic psoriasis. They were told no. So the summary of their report concluded that it is chronic GVHD which is similar to chronic psoriasis, along with a host of other skin conditions related to GVHD. This still leaves us with no definitive treatment except to find a happy median with the steroids. Last Tuesday, Lucas received his 3 week Pentamadine IV and we discussed the NIH report. It was agreed that we lower his steroids again, this time to every other day 30 mgs alternating 10 mgs. So far since last Tuesday, he's had flare ups on his arm and face, but has gotten better with the use of the Protopic cream. He's still on all the same meds, including his immune suppressants and we hope some day to wean him off at least one of them.
Lucas had his Botox and Alcohol Block injections yesterday in Newark. Dr. Armento gave him the maximum amount he could and hit some deep muscles and nerves. For some reason, Lucas wouldn't stop bleeding and it took longer than usual to stop the bleeding. He didn't bounce right back from this procedure and had a bad night. Today was his last day of school, but we decided to keep him home since he was very restless. He vomited a few times last night and that doesn't normally happen. He didn't urinate for a long time and thankfully when we checked on him early in the morning he had gone. The injections and his normal meds just simply relax his muscles too much causing him not to go and causing him to be very restless and agitated. Dr. Armento also put Lucas on Neurotin because of his increased seizures. He feels this could help decrease the seizures and stop with the nerve pain that causes the spasms.
Right now, Lucas does his best to manage through each day. Watching him get by each day and still laugh at the silliest of things is something to witness. Somehow he makes our lives that little bit more easier in how he deals with the pain in his joints, spasms, skin irritations, seizures, etc.. Like he's the one taking care of us by dealing with it all with little complaint except for the moaning when TV commercials come on. People might see us joking or just going about our business with Lucas like nothings wrong and they'll never really know how much he struggles each day.
We've been working on getting things going with our generator. We have the types we'll need and it's a matter of organizing it. We learned last week that the Ye Olde Pie Shop (Tom and Eileen Caruso with their sons Nick and TC) have organized Power Jam at their shop on July 8 from 4-8. The boys had an idea to have some bands play for a benefit for Lucas's generator. They've done a lot planning and have about 7 bands playing. We greatly appreciate their thinking of Lucas and giving so much time for this event. Come out if you can, we'll be there with Lucas.
Mom still checks in on many of the websites and we're always thinking about the families and children who are fighting each day and those of our friends who have lost children the last few years. We hope for them and ourselves that we can somehow find peace and stay strong each day. God Bless!
Friday, May 18, 2007 3:32 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas turned 13 on Mother's Day. He celebrated with sucking on a few shrimp with cocktail sauce as promised. Too many thoughts and feelings as he reached that milestone knowing how far he has come and how far he has to go. The highlight was taking him for a ride in the front seat of the Jeep around town. He enjoyed every minute of it sitting up there with Dad. There's more room in the front seat.
As of this update, Mom and Abby are on a flight to Orlando to stay at Disney with Uncle Calvin and Aunt Kathy. They'll be gone to Sunday May 27. Dad is looking forward to some quality time with Lucas and taking care of him.
We wanted to update when the results from NIH came in, but we were told that they're waiting for the Dermatology unit to contribute there findings. Overall it was a long 4 days but a good 4 days. Dr. Baird, the nurses and specialists were all extremely friendly and interested in Lucas's GVHD struggles. Lucas had 3-4 appointments a day with the various medical disciplines. Some of the doctors found Lucas's condition and his reaction to some medications very interesting. They were very glad that we took Lucas to NIH for the GVH study and his history in dealing with his BMT was very helpful to their work. CHOP had recommended Lucas to NIH and we basically found out that CHOP's treatment and care for Lucas is covering everything. They may have a few ideas, but we think it's still going to come down to lowering the steroids and dealing with the flare ups at that time. It does appear that Lucas only gets GVHD on his skin and no where else. There are very rare situations where the GVH doesn't burn itself out at all and that appears to be Lucas's case. The facility was tremendous and we did get out for an early supper with Lucas at a local Japanese restaurant and then tried to drive downtown to see a few of the famous sites.
Lucas had his Pentamadine IV a few days ago and CHOP lowered his steroids from 30 to 25mgs a day. Lucas also got a vaccination and they want to see how he reacts to it. Instead of 3 weeks, they want to see Lucas back in 4 weeks. That was great news to gain that extra week home.
Overall Lucas is doing the best he can and having his ups and downs with spasms and pain. He's been back to school everyday possible. We again want to thank everyone in town for dropping off meals and helping Lucas. God Bless!
Saturday, April 28, 2007 9:26 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
We wanted to update before taking Lucas to the National Institute of Health in Bethesda, MD. We leave tomorrow to stay at the Childrens Inn on the NIH Campus for the next 6 days. Mom has been putting a lot of time in organizing Lucas's paperwork from the last 4 1/2 years. We had to have Minnesota (this took some doing with their legal dept.) and CHOP (Ginny was thorough as usual)send info to the NIH doctors and she had to put together a package of documentation that we have been keeping, including info from Hackensack UMC. They have everything now to work with. Mom was able to go back into Lucas journal to get relevant material and dates. It is very important for them to know the dosages and dates of his immune suppresant medications and steroids in relation to his GVHD flairups and all of his surgeries and the infections resulting from them. Lucas has come a long way and struggled so much, but we haven't been able to find a way to get him off these transplant medications and steroids. We are hoping that his appointments this week could result in NIH coming up with a solution or recommendation to help Lucas. He cannot continue on this course for the long term.
Lucas had his tri-weekly visit to CHOP this past Tuesday for his Pentamadine and checkup. Ginny and Dr. Bunin saw him and decided to lower his prednisone/steroids. Lucas was taking 30 mgs of steroids everyday and they told us to alternate each day from 30 mgs to 25 mgs. Just in 3 days, his skins has more of a red tone to it and a few more patches. They are anxious to see how Lucas does this week and want us to contact them the first day to see how it went.
Lucas has been very tired lately. One day this week in school, they said he slept most of the 4 hours. He's been crankier and not able to hold his head up that much as the day has gone on. He's been grinding his teeth a lot more. Mom's had to give him Valium to try and calm him most nights. He's just not been himself the last week or so. We hope he's just trying to fight a virus and that he'll bounce back.
Abby is staying with her Grandparents for a few days and the Scharmann's for the other few days while we're away. She was upset this evening to leave us knowing she won't see us for 6 days. We went to AC Moore with her and Lucas to pick up supplies for Abby's music project. Abby found a lobster beany baby for Lucas and that made the trip worth while. Very simple things make Lucas and us happy.
Probably the most important update we could include this time is Lucas will be turning 13 on May 13 - Mother's day. We are anxiously awaiting that date and are planning to get a shrimp platter that day. As much as he struggles each moment of the day and the memories we have of the old silly Lucas, we are extremely grateful to have him with us and we try to live everyday with him to its fullest!
There have been so many people helping us recently from dropping off meals, gift cards, making donations to the pharmacy for Lucas's meds and supplies, making donations to help with other medical bills, spending money for down at NIH, that we just want to thank everyone from the bottom of our hearts. It was extremely helpful during tax season with the time demands we had. We know there's not much of a chance for us to rest or relax, but we want everyone to truly know that their generosity makes a huge difference in our daily life. Godspeed!
Sunday, April 1, 2007 8:43 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Since last update, Pentostatin treatments for Lucas were stopped by CHOP and we went back to the tri-weekly Pentamadine IVs. Since the chemo treatment has stopped and we've raised his steroids, he's been more alert and sleeping better through the night. That's still not good, since it's the steroids that we're trying to stop and they're what seems to be settling him down. We went on March 20 for his normal IV treatment and skin check at CHOP. When Lucas had Xrays taken at Monmouth MC, they saw something on his shoulder, so Dr. Applenc recommended another Xray at Radiology after his IV. Dr. Armento had also given us a script for another Xray and to just have another one taken of Lucas's hips. Unfortunately, while taking the hip Xray, the technician showed Mom that his right hip was dislocated and out of the socket by about 2 inches. For how long that's been like that and how Lucas is not in constant pain is again baffling. They know his tolerance for pain and suffering is very high, but they requested Dr. Flynn in Orthopedics to review the films. Since he's very familar with Lucas, he initially advised doing nothing, but then we received a call to take him back to Dr. Flynn this past Friday for a checkup. His advice again, just like his advice with Lucas's scoliosis, was to do nothing. Also, Lucas has a Fribroma on his shoulder and nothing to worry about right now. Again he said Lucas is at a 100 percent risk of infection and he recommended at this time against any surgery. He told us to do what we've always been doing and that's be careful with him and just monitor that nothing gets worse or begins hurting him more. However, he said if Lucas does develop more pain, that would probably now indicate that he's fractured a bone and we'll have to re-evaluate the situation.
A few weeks ago, CHOP was not happy with his skin and were still confused how much was fungal or GVHD. We said last time that Dr. Applenc recommended Lucas for a GVHD study at the National Institute of Health in Maryland and we're scheduled to take Lucas for 4 days in early May. They'll only be conducting some tests and gathering information and hopefully could come up with something to recommend to CHOP. As of this past Friday, they were happier with his skin and the rashes, but still feel that we must still go to NIH and get their opinion. We can't rely on the fluconazole and steroids to help as they're doing more long term harm to Lucas than good, but for right now we have no choice. NIH has informed us that they are interested in seeing Lucas to learn more about Metachromatic Leukodystrophy. Maybe Lucas's situation if anything could help research with future transplants.
CHOP also is looking into a new program at their hospital for Lucas. Dr. Flynn is not at all happy with his bone density (Osteoperosis) and wanted us to get an opinion from BMT about Lucas getting involved with that new team. Ginny is looking into it for us and felt it was a good idea. We told Dr. Flynn that Lucas has been fitted for a new body brace and foot brace. Dr. Flynn was happy to see that his curvature was still flexible and not fused. He did recommend stopping certain types of Physical Therapy on his right leg (range of motion exercises) and try to keep it basic.
Lucas has been going to school most the days that he hasn't had doctor visits. His 3 month dental checkup went well and no teeth pulling at this time. We're now holding off on doing the EEG for his seizures until we visit NIH. They may be performing some of the same tests we're now comtemplating.
Since our last update, we've been once again overwhelmed with the generosity of many families in our town. About a month ago, we had a visit from another family in town whose son, who happened to be in Abby's class, has been going through treatments for Leukemia. She dropped off a meal and visited Lucas. In talking to Mom and seeing Lucas she was not aware that the daily grind for us and Lucas has been going on for almost 5 years. We've had support from our closest friends, but she then contacted a good friend of hers who had mobilized other families in town to help them with meals, etc. That caring and support was shifted over to Lucas and our family at this time. Michele Carrano, has been organizing meals for our family 2 times a week and it's especially greatly appreciated after a long day at CHOP. Her husband has been dropping off bagels on Sunday mornings and other people have been dropping off gift cards or making payments directly to Little Silver Pharmacy for Lucas's R/X. This has all come at a perfect time with Lucas's freqency of hospital visits and Dad dealing with tax season. We want to say how much we appreciate all the support and caring for Lucas and our family at this time. It makes an extreme difference in our lives and it's a good feeling knowing that so many people in town want to help Lucas. God Bless!
Tuesday, February 27, 2007 8:09 PM CST
QUICK UPDATE: Mom and Grandpa took Luke to CHOP on Tuesday for a skin check. Dr. Applenc and Ann were still very concerned how his skin looked. They're very convinced that he has GVHD, but also feel a lot of the patches are fungal. They doubled his Diflucan for 2 weeks in hopes of clearing it up. Lucas has been feeling very crappy lately and we found out he tested positive for a new viral strain Metapneumovirus and it has to run its course. Finally, Dr. Applenc has recommended that we take Lucas to the National Institute of Health (NIH) in Bethesda, MD where they are conducting some GVHD studies and feel Lucas could benefit from us taking him there. He wants to make sure that CHOP isn't missing anything with his treatment. We will have to take him for a 3 day stay when it's arranged. Also, Lucas doesn't have to receive his Pentamadine IV every 2 weeks, but rather they decided he can go back to every 3 weeks, but only at CHOP.
THANK YOU FOR CHECKING IN ON LUCAS!
The last 30 days have been very hard on Lucas and he's had very few good moments. Somehow, someway he still manages some laughter, but not nearly as much as before.
Back on Feb 12, with the pending ice storm (we'll fill you in later) coming, we took Lucas to CHOP for Pentostatin and Pentamidine IV's. A few days before, his skin had exploded with rashes and GVH looking markings. When we arrived for his routine biweekly treatment and exam, Dr. Applenc and Ginny were stunned at what they saw. It seemed that Lucas's skin was reacting well to the treatment, forgeting for one moment the side effects of the chemo, but once we lowered his prednisone to 15 mgs a day, his body sent a message that the steroids were too low. In other words, the treatment hit a brick wall. They did a skin biopsy that day and the results concluded their fears that it was GVHD and not a different type of rash. We had to go right back up to 30 mgs of steroids a day. They had a gut feeling and this confirmed it in that Lucas's body is no longer generating it's own steroids. Our bodies generally produce their own steroids at night, but in Lucas's case that ain't so. We took Lucas back to CHOP last Thursday for a 15 minute checkup of his skin. It was very apparent that the BMT staff were upset and dejected that this failed for Lucas. The last time Mom saw doctors that upset was when Dr. Krivit saw Lucas rapidly deteriorate in 3 weeks in Minnesota after everything was going so well and he sent Lucas home. We're very disappointed that Lucas has been through so much from this treatment the last 4 months and it has done nothing to rid his body of the GVH. We've been told for over 4 years now that GVH should burn itself out of his body, but not
with Lucas.
As a result of the last 5 months, they also said that before this treatment, Lucas was receiving his Pentamidine every 3 weeks, but now his body has adjusted to having it every 2 weeks and that he'll have to receive the treatment every 2 weeks forever. The only consolation from all of this is that we could go back to our local hospital for the interim treatments. Today was Lucas's first IV back at Monmouth Med Ctr since last Sept. Dr. Fisher was concerned with the fact that he had a 101.9 fever. She ordered a chest Xray which showed his lungs were clear. A higher than 101.5 fever generally means an automatic visit to the ER, but we decided to wait until Dr. Fisher saw him today. She conveyed to CHOP what she saw with Lucas and discussed admitting him. CHOP advised her in Lucas's situation, Mom and Dad know what they're doing and he's better off being cared for at home and that they'd know if his fever couldn't be controlled. The Xray also showed a hole in his left humorous bone in his shoulder and we will need to further investigate to make sure it is nothing different.
Lucas has been missing a lot of school lately with the weather and other children in his school being sick. Mom met with his neurologist Dr. Barabas the other day at school. He informed her that due to his workload and his brother having a stroke, he could no longer continue to see Lucas with the complexities of his case. He referred 2 doctors to us. One from North Jersey and one locally from Jersey Shore Med Ctr. His first choice was North Jersey, but it was decided that what we would probably be better off staying local at Jersey Shore. He recommended that Lucas be admitted for a few days and have another EEG done to try and determine the extent of his focal seizures and to at least get a baseline. We agreed that we'd try Jersey Shore first. He didn't feel CHOP could offer us anymore in the Neurology Dept than the doctors he recommended, saving us tons of travel time. We know several medical professionals at JSMC and that could help cutting through the red tape.
The ice storm a few weeks ago was pretty tough. We lost power Wed a.m. and it didn't come back until Fri late p.m. By Wed night most of our neighborhood had power on but us and about 20 houses. Abby went to friends for 2 nights and Wed night we stayed home with Lucas. The house got down to 54, but that was nothing. Lucas did fine. We later found out that most of our town, even those who lost power for just 8 hours went to the local hotels. When Thurs morn came, we called the utility and they promised power by 12. Nothing at 12. Al Bennett from our First Aid Squad checked in on us and suggested it's pretty bad in the area and we should get Lucas somewhere warmer. His bed deflated, suction machine we were using was out, immune meds were in the fridge, so Mom took him to her parents. Dad stayed home keeping an eye on the pipes, Lilo and Stitch, etc. Finally, after some calls and help from our police chief and old neighbor, crews arrived Fri to clear trees and fix the wires. Thank you to our friends who checked in on us and dropped off coffee, hot water and a meal. Thurs nite, the house got down to 34 and same on Fri, but we were so proud of Lucas who was having really bad days for staying home as long as he did. We had plenty of batteries for DVD and video now. We realized that we have to take action now if this happens again, so we have a few electricians/friends coming to size up the house for a natural gas generator and put one in. It's gonna be some "ching ching" as Lucas used to say, but we need to keep the house open for Dad's work and Lucas's comforts. We are grateful that 3 years ago we took down all the trees around the house to eliminate the worry of them causing havoc someday.
It's been a tough tax season for Dad with hospital visits and no power. Mom hasn't been feeling very well the last month. With Lucas not doing so well and Pop recently passing away, it's not easy working long days next door to Lucas's bed room hearng him struggle. We take the good with bad and don't really complain. Who can you complain to anyway? Everyone complains today and at times you just tune it out. When Dad was chopping the ice, a lady drove by almost crying as to what to do with her dog. They were at the hotel and left the dog home. She said "you can't imagine what we're going through right now -it's too much." Dad kept his mouth shut as usual, and kept chopping. We stayed with our cats and watched over them. The pressure of making a living in 90 days tests your will power, but we both feel it is worth it. Mom and Dad work together taking care of Lucas, running the business and keeping Abby busy, no matter how busy the season is. We don't have to ask anyone for a day off and sometimes it's just as easy when Lucas is up all night to just work in the wee hours of morn. One final note with Abby, after 6 games she scored her first basket of the season in Saturdays game with 2 minutes left. Never have seen her so excited. She couldn't wait to get home and tell Lucas. God Bless!
Wednesday, January 31, 2007 7:51 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has had 3 Pentostatin infusions at CHOP since last update. He's now had a total of 8 since October with tentatively 5 more planned. The days at CHOP are long with triage, their trying 3-4 times to find a good vein for his IV, his checkup and the whole procedure taking about 4 hours. They have to check his Creatine first from his blood work before he can receive his Pentostatin. His counts showed that his body is not able to fight viral infections, normal range is between 34-48. His count was 5, so we just have to keep an eye on him and try to keep him away from sickness. As always, it's the ER if his temperature reached 100.5. Once his Pentostatin arrives, between the flushes and his Pentamadine IV, it takes about 4 hours. In the infusion room, they bring in a stretcher and make room in one of the IV stations. Somedays it's very loud there with some families seemingly blaring their TV's. Overall, they're starting to feel this treatment is working for Lucas. His skin looks very smooth, except for some GVH on his face and scalp. Is this a long-term treatment? No one really knows. They have lowered his prednisone down to 15 mgs a day and also lowered his Norvasc (blood pressure med). It's a rough few days after he's home with diarrhea and retching. Everything has been complicated the last few weeks with Lucas fighting a nasty cold. They're always very concerned with him catching something more severe with no immune system. We've all been sick with congestion and coughing and Lucas has been feeling it more. He didn't need any Xrays on his last visit as it appeared his lungs sounded good and it's just in the back of his throat and head.
We have had Lucas home from school the last week and 1/2 and CHOP has recommended we keep home the rest of this week until we can get a handle on his cold. We've been suctioning him daily to help remove the loose phleghm in his mouth. Lucas weighed in at 78 lbs. the other day, up over 2 lbs from last visit. Mom informed them that he's not urinating as much and he's probably retaining more fluid, hence the weight gain. He's not been a happy camper lately. They prescribed an expectorant with codeine and we're hoping this clears him up. It's made him even more sleepier. However, he's been waking up 4-5 times a night with a hacking cough and a few Bowel movements the last few weeks. We haven't had a good nights sleep since early January. With cold weather finally here and a few snowy days, we can't wait for Spring. The only good thing we can say for January is that Mom and Dad celebrated their 40th and 46th birthdays. Mom's had a surprise 40th party given to her by her friends last Friday and she had a great time.
Lucas has his Botox appointment on Feb 20 at Beth Israel in Newark. Mom met with Dr. Armento and they agreed that the injections are helping Lucas and we should continue that course. In closing, a few thank you's. Thank you to the Peninsula Soccer Club and other individuals for your donations to Stennis Foundation in memory of Pop. Thank you to Mr. Gale for helping us deal with that dreaded hospital bill from Hackensack (They're still pestering us and now it's in Jeff's hands). Thank you to the Little Silver Velame boys for a great weekend of food and laughs in upstate NY for Dad (wasn't any physical rest, but a few days of mental/work rest). Dad brought home a picture of 26 lobster tails for Lucas and each time he sees it, he opens his mouth and smiles. God Bless!
Wednesday, December 20, 2006 6:23 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
Last Wednesday, Lucas and Abby lost their Pop-Pop Viscomi. He fought and fought, but his body began to shut down and he passed away early in the morning. To family and many people back in Dad's hometown of Phillipsburg, NJ, this bricklayer/carpenter was one of a kind. His infamous "Hey Luke" can still be heard. This is Lucas's website, but to many who follow it, they know how much Pop and family mean to Lucas. Almost 4 1/2 years ago when Pop found out Lucas was very sick and it didn't look good, Pop was devastated and cried and couldn't sleep. He for some reason felt so much guilt that Lucas and other children we have befriended have gotten so sick and some have passed on. Pop was as true a Catholic as there could have been. He taught us true humility, kindness and charity. When Pop was 9 in 1930, his 11 old brother Petey died. His mother died when he was 1. His 1st nephew was killed in WWII. His wife died in 1988. He survived 64 bombing missions in WWII. All of his siblings predeceased him and his grandson Lucas was stricken with a terrible disease. It is only fitting that Pop received a military funeral with the Air Force guard coming to play Taps. The flag that draped his Army casket was folded and presented to Lucas. It was a very emotional moment for all who attended. Thank you for those who have written and we requested in his obituary that all donations be made out to The Stennis Foundation.
We had a longer update last time, but it was cut off for some reason. Lucas has been visiting CHOP every 2 weeks since late October. Lucas received his 5th Pentostatin IV infusion yesterday along with his normal Pentamadine infusion. The days are long and we always expect to be stuck in Philly traffic and not home until 7:30. The last few times Lucas has had severe diarrhea and gagging after the treatment. The Zofran seems to be working for him and we can tell when he needs another dose. He's been more tired the next 6-7 days after the treatment and then he bounces back the 2nd week. He's been going to school every day possible and they said he's been sleepier more than normal. Overall his skin is looking much better and he doesn't scratch anymore. We've cut back on the number of showers for him as too much water doesn't help. They still cannot tell if the Pentostatin is working, however, starting this morning, we lowered his Prednisone from 35 mgs to 30 mgs a day. The protical calls for lowering steroids 25 t certain intervals, but CHOP feels that's too much for Lucas and we only lowered 5 mgs, instead of 8.75 mgs. Now we have to monitor his skin and keep a close eye to see the if process is working.
The last visit, Lucas's congestion was a concern, but an X-Ray revealed no problems with his lungs. We cannot give him Antihistimines to help the congestion due to the drug interactions. Lucas had his annual gastro visit with Dr. Teitlebaum at Monmouth and everything was looking good. He was concerned with his G-tube site and his lips, but it was determined that those were side effects from the chemo. His spasms have simmered down lately and he's been sleeping through most nights, except the few nights after his infusion. His labs have been doing well overall with his blood pressure still running on the high side. They're still keeping him on the Norvasc, but we must keep a close eye on it. We wish all a Happy Holiday and God Bless!
Saturday, November 25, 2006 11:16 AM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We hope everyone and their families had a great Thanksgiving. We spent almost 6 hours on the road back and forth to Pennsy in pouring rain visiting family, but it was well worth it. Lucas's Pop wasn't there with us as he's still in ICU struggling to stay alive. He doesn't really know who anyone is, but he's hanging on.
Lucas completed his 3rd infusion of Pentostatin at CHOP this past Tuesday. He's still on 35 mgs of Prednisone a day with no other changes in his meds. They give him Zofran (nausea) to start out, then they run through his Pentamadine for 1 hour and then a 1 hour flush then his Pentostatin over another hour plus then another hour plus flush. It's a long day for Lucas as after an early start we're not getting home until 7 - 7:30. We give him Zofran at home and for the next few nights we sleep in his room with him. He has diarrhea and gagging. The gagging is his way of telling us his belly is bad and we have to give him Zofran. After several days, he settles down. He's been going to school everyday possible, even the day after his chemo infusion. We might only let him stay in school for a few hours, but it's good for him. The game plan right now is to wait until after his next IV and then start to wean off the steroids. CHOP is convinced that Lucas's body is no longer generating it's own steroids and we may be able to lower the daily dose, but never take him off it 100 percent. The website is cutting off our update and that's all for now. God Bless!
Sunday, October 22, 2006 11:32 AM CDT
Thank you for checking in on Lucas!
QUICK UPDATE - 10/24/06 - Lucas was accepted into the clinical trial study for Pentostatin. It is a chemotherapy drug that is normally used to treat Cancer, but believed to possibly help treat chronic GVHD. We go first thing Thursday morning for his first infusion and he'll also receive his Pentamadine at the same time. This treatment would be given every 2 weeks for 6 months. The hopes are to get him off prednisone, cellcept and prograff, but overall to help rid him of the complications from his GVHD. It has the normal chemo side effects except loosing his hair. It will bring his white blood cell count down and we must even more deligent to prevent him from getting any illnesses.
Since last update, Lucas's 4th anniversary of his diagnosis passed. He was 8 at the time and is now 12. We have been very busy and tired since last update. Many trips to CHOP and telephone/emails in attempt to figure out how to control his GVHD and what it's doing to his skin and general comfort. His skin is dry with red blotchy patches all over his legs and arms. Lucas has not been comfortable the last several weeks and it is causing him severe itching and spasms, scabs from the bleeding, and sleepless nights. We have tried different over the counter creams, medicated shampoos, Vitamin E gel capsules on his head, etc. and he's still very dry and flaky. On our most recent visit to CHOP for a 10 minute consult it was decided to put him on 35 mgs of Prednisone each day. A very high dose considering he's been on it almost 4 years (causes bone deteriation as well as other side issues). It's a little too early to tell if it is keeping it at bay, but our goal right now is to make him comfortable no matter what. We told Dr Applenc and our nurse practitioner Anne that our goal for Lucas is immediate quality of life. If the side effects long term of what we do now would be very negative, then Lucas with our love will cross that bridge down the road. He's already been on Prednisone much too long, but if it works now, so be it. We want them to make decisions that they believe will help him now and it was very important that they understand our beliefs. Dr. Krivit's opinion of Lucas's prognosis 4 years ago was very blunt and to the point. He never pulled any punches, especially in front of Lucas. We conveyed that to them as they're not as aware of MLD as Minnesota/Dr. Krivit was and are. We let them know that we have a tremendous respect for how they care for Lucas and what they have done for him. It was just important for them to know that Lucas must be happy and able to laugh, and not be in so much pain and that we're not so concerned about years down the road.
They also had a meeting about Lucas. One of the ideas they had was to add another immune suppressant med called Pentostatin. The goal with this would be to try and push his system very hard and knock out the GVHD. GVHD normally burns out of transplant recipient's system in 6 to 12 months and it's not common for it to still be around 4 years later. This med would have to be given at CHOP every 2 weeks for 6 months and if it hasn't worked by then, Lucas would have to keep taking it at CHOP for another 6 months. It's currently still administered in a clinical trial basis and Lucas would have to be accepted first, but they said his chronic condition shouldn't be a problem. It's not covered by insurance, but our insurance case worker is trying to work it through as a last resort to hopefully help Lucas and prevent other further costly complications. We go this Tuesday to CHOP for his Pentamidine antibiotic IV (prevent pneumonia). If we go for the biweekly IV combined with his every 3 weeks of Pentamidine, he could be going to CHOP all but 4 weeks out of the year. Combined with other appointments, PT, botox, etc., it could be a busy hectic year.
Last Tuesday, Lucas had his Botox and alcohol block injections at Beth Israel in Newark, NJ. Dr. Armento was very attentive and took a lot of time discussing where we should have Lucas injected. He's very compassionate and understanding with Lucas's physical problems. As Lucas has been having discomfort with his right hip, he decided to inject alchol blocks inside his right thigh. Thankfully, it has helped.
We've had a lot going on and Mom has been in touch with some families who are also starting to go through dealing with their children having MLD. We check the other sites and try to see what things may be working for other kids that may help Lucas. Vice versa, we feel to keep updating with Lucas as best as we can could help other families plus give us a very important history of Lucas. Our concerns with the Cellcept (immune suppresant) not working was documented in our web page over 2 1/2 years ago, so it is important to keep this going as it forces us to document Lucas's life.
Lucas's current medications are: Prograf, Cellcept, Prevacid, Prednisone, Baclofen, Norvasc, Fluconazole, Penicillin, Magnesium, Acyclovir, Xanex and Zrytec. We now have Lucas's lift system installed and it has drastically helped Mom in getting Lucas in and out of bed and into his wheelchair.
Last Monday, we took Lucas and Abby to the Camden Acquarium on our way home from CHOP. We have been talking about it for 2 years, but Lucas has never been in any condition to visit it after a 3 hour hospital visit. Driving a few hours for a 10 minute appt., gave us the incentive to visit with the kids and we were very glad we did. They both enjoyed it, espcially Lucas seeing the Lobsters. The highlight was the Hippopotamus pooping right in front of Lucas. He cried laughing. The hectic week continued as on Friday we took the kids to Dad's home town of Phillipsburg to watch their cousin Justin's football game (7-0) Friday night. The kids love their cousins, especially their joking cousin Justin. He's a great athlete, more importantly a good kid and has done a lot through his accomplishments to give Lucas and Abby many bright moments. We would love to be there Thanksgiving morning as they play Easton, PA (8-0), but we'll be able to watch it on ESPN. We took Lucas on a hayride a few weeks ago which he enjoyed and last night we went back to Phillipsburg with the kids to a Tricky-Tray raffle to raise funds for their Nonna - Lillian Viscomi Scholarship Fund. Abby didn't win anything, but she enjoyed herself. Our family was there also, but the last two days were tiring for Lucas.
We hope we can get this new IV med approved and that it helps Lucas. He needs to have something that will work and make him comfortable and give all of us a little rest. God Bless!
Wednesday, September 6, 2006 4:22 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
Today was the first day of school for both Lucas and Abigail. Lucas was very excited when we dropped him off and he had an upbeat day. Abby is now in 4th grade and enjoys her new class. It rained most of the 12 days Lucas was off, making it hard to get him out, but we did try to get him out of the house when it wasn't raining. We sometimes just sit on the deck or in the garage joking with him and telling stories.
Lucas has remained on the same dosage of Fluconazole and Prednisone since last update. He's still scratching and uneasy, but his skin overall is looking better. He's had a bout of diarrhea, but it doesn't appear to be C-Diff. He still wakes up 2-4 times a night and has been taking little naps in the afternoon. He seems to just tire out some days in the late afternoon. His last visit to CHOP was on Aug 22 and they were happy with his skin and rashes. They decided not to change anything and it's looking more and more like he'll always be on the Prednisone and he'll be on the Fluconazole for the immeidiate future.
Lucas continues with his weekly regiment of PT and he'll start with more at school. We had to make some alterations to his body vest and we try to keep him in it at least once a day and always when taking him to school. His new hospital bed arrives tomorrow and his lift system should be coming in by Oct 1. We're looking forward to having him in a bed that can go up and down and help our backs.
We want to thank those who continue to help Lucas and our family and check in to see how he's doing. The days are still long and the nights are longer, but we continue to give Lucas 100% of our energy and feel it's best for him to be as stimulated and happy as he can be. God Bless!
Saturday, August 12, 2006 9:33 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
This past week we were at Hershey Park, PA. It took us 10 minutes to pack our stuff and about 4 hours to pack for Lucas. We double checked his medications, feedings, etc. to make sure we were prepared. Lucas did very well on the ride out and overall he did very good in the park and getting around. The park itself is very hilly and was crowded, but we managed. The only negative to mention was on Wed night, Lucas had trouble sleeping. We were up several times with him and he was having severe spasms. Dad slept with him each night and had to hold his arms for most of Wed night so that he didn't scratch himself too much. Other than that, we were able to carry him on the ferris wheel, merry-go-round and the tram. He could stay in his wheelchair through only one ride, the tour of The Chocolate Factory. Our last night we ordered room service and got him Shrimp Cocktail. He enjoyed sucking on a jumbo shrimp and we all truly enjoyed that treat. Abby and Mom went on a roller coaster together, and it was probably the last time Abby will ever go on one that big again. Abby had a great time and she kept Lucas laughing and upbeat. We again want to thank Mr. McGinnis from Jason's Dreams for Kids in Red Bank for making this trip possible and pushing us into getting away with Lucas.
On Friday, we drove to CHOP from Hershey. The Philly traffic was horrendous, but we were able to schedule 2 appointments on the way back from our Hershey trip. The first was with Dr. Flynn in Orthopedics. Lucas had on Xray taken and it showed his curviture went from 60 degrees to 67 degrees in 6 months. The main thing Dr. Flynn wanted us to see was that most of the curviture takes place below his lungs and heart. He felt this was some good news for Lucas. In his opinion, he believes any spinal surgery for Lucas would be with 100% chance of infection. He doesn't feel Lucas would really benefit from having it done and honestly feels he would not survive the procedure. It was in the back of our minds if a decision had to be made, but Dr. Flynn put it on the table for us. We agreed not to put Lucas through the surgery and he advised us not to worry about anymore Xrays or seeing him unless something else happens. He feels it's mainly a positioning issue and between his body vest, pillows, wheelchair adjustments, etc., Lucas can manage without the surgery. We felt good about that visit and put the issues to rest.
We went upstairs to Oncology and met with Ginny and Dr. Applenc. They are fairly sure that various rashes and dryness are GVHD and others are definitely fungal. The patches were all over his body and his face and scalp were very dry. They put Lucas back on the Fluconazole for the fungal and decided to keep him on 35 mg of prednisone with alternating days of 5 mg. There is no question now that Lucas will remain on steroids for a while. Issues with chronic GVHD on the skin are a concern. For Lucas, it's a comfort issue. It's not easy watching him dig his fingers in his scalp, neck and head to the point that he bleeds. We try to stop him as often as we can. The overall goal with Lucas was to have him off the prednisone. The BMT staff doesn't like any of the kids on steroids this long, but at some point in rare instances, they have no choice. We were told that being on Fluconazole too long causes liver damage and of course steroids are much more damaging to the body when on them too long. With Lucas, we have no choice. We must make him comfortable and less restless today and try to block out the long term effects these drugs are doing to him. These were all possiblities Dr. Krivit explained to us that could happen. He said someday Lucas may be confronted with decisions on his treatment that knowingly could be damaging to him long term. All we know right now, is he fights each and every day for his life and somehow he's happy most of the time. Ginny and Dr. Applenc were very pleased and happy to see him smiling and laughing as they know he's very uncomfortable and in pain, but he goes on.
The other week, we had a gentlemen come to the house to measure for the installation of the barrier free lift System over Lucas's bed and for the back room. We also got approval for a new remote controlled bed. Both of these additions should help with moving Lucas as he gets bigger. He's now closing in on 80 pounds. Lucas has been going to school most days other than those extremely hot ones. Lucas is coming up on his 4 year anniversary of his MLD diagnosis. We continue to remember in our thoughts and prayers the children we have met who have passed on and those who continue to deal with this disease. We ask that you also keep these children in your prayers. God Bless!
Wednesday, July 19, 2006 9:16 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
It's been 30 days since our last update. Lucas is still suffering from complications with his GVH. When we went back to CHOP on June 27 his skin still looked pretty good. We tapered down the steroids to 15mg alternating 5mg on the other day and kept him on the Cellcept. Then within a week the rashes and marks on his body and the dryness and flakiness on his face and scalp came right back. Mom emailed pictures to them last week and we were told to leave everything as is till they see us on July 18th. His skin continued to worsen to where his arms looked all blotchy and his face and neck were red and raw. He was scratching wherever he could reach. When we arrived at CHOP yesterday, the doctors were not happy when they saw Lucas. They are certain that some of the patches are GVHD, but also believe that other areas might be a fungal infection or even an allergic reaction to one of his medications. Right now, they really don't know. So, they raised his prednisone to 35mg alternationg 5mg on the other day, and also added high doses of fluconazole for 14 days. We are really hoping Lucas' skin starts to get better and not worse and that we can keep him comfortable. He is rubbing his eyes so much because his eyelids are so dry they are red and puffy. Mom is still putting vaseline intensive care advanced healing on his skin 3-4 times a day, but can not keep up with the dryness. Our next visit to CHOP is on August 1 or sooner if his skin gets worse.
All of his other medications stayed the same. Lucas is on 15 different medications a day, and it doesn't look like we will be able to stop any of them anytime soon. He still has spasms, but we feel the botox is starting to help. Due to the prednisone, we are seeing fluid retention in his feet and must elevate them when we can and massage the fluid out of his feet to his legs.
Lucas continues to have PT 2 times a week and also gets PT, OT and speech at school. He works very hard during his sessions and he will get frustrated during them at times. We are waiting for delivery of a hospital bed, one that goes up and down to save Mom and Dad's back from bending over Lucas while changing him, and a special mattress to cut down on skin breakdown. Also a barrier free lift system as Lucas is 77 lbs and a little heavy for Mom to lift (even though she still does sometimes).
On a final note, we are going with the kids to Hersehy Park from Aug 8 to Aug 11 thanks to Dennis McGinnis from Jason's Dreams for Kids in Red Bank. We feel this will be great for Abby and its our first family vacation together since 2002. The ride from our house is about 3 hours and we feel Lucas will manage well with that plus we're staying right in the park. Our biggest concern contemplating any trip was how far we could drive and the ability to get Lucas back to our room in case he's not doing well or we have to change him. We have coordinated the timing of the trip with Lucas's Aug 11 appointment at CHOP with Dr. Flynn in the Orthopedic Dept. We plan to leave Friday morning from Hershey and go straight on to CHOP, saving us a 200 mile trip. God Bless!
Saturday, June 17, 2006 8:24 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
After putting Lucas back on daily doses of Prednisone and starting him with the Cellcept, within 3-4 days the rashes and flakiness started to subside. His skin looked much better. We were in touch with CHOP each day of the week to keep them informed of his condition. We took Lucas back to CHOP this past Tuesday as he was scheduled to go to Monmouth Med Center for his Pentamadine IV, but they wanted to see him. Dr. Brown, Dr. Applenc and Ginny (N/P) were very pleased with the immediate results within just 7 days. They decided to lower his Prednisone from 30 mgs a day to 15 mgs a day and to keep him there for a while. They said there are rare cases where children may have to remain on steroids all the time and it's looking like Lucas may be one of them. The goal of keeping Lucas off the Prednisone lasted only 3 weeks. We know the steroids mask a lot of things and keep other symptons in check, but for Lucas, it didn't take long for him being off the steroids for his GVHD to flare up right away. They want to see him every week until further notice. This Tuesday, we take Lucas to Beth Israel in Newark to have his Botox injections done by Dr. Armento. It's been 5 months since his last procedure and the spasms have been occurring more and more. He's due. CHOP still wants us to email pictures of Lucas's skin and come back the following week. He's had bouts of roid rage from the heavy doses of Prednisone and he's done his best to get through each day.
He's been waking up several times a night and early in the morning. We've taken him to school when we have felt it was worth it for him. He has one more day of school left and then he's off until July 5 for his summer program. He's not been into going places, although we've tried, but he's more comfortable at home. With the heat moving in, it's just as easy staying home with him doing activities in the house and simply letting him watch his favorite cartoons and movies. He's even more louder when the commercials come on (Prednisone). It's not worth going somewhere if he's going to get upset and cry. Usually one of us will go with Abby for school chorus, etc., while the other stays with Lucas at home. Abby wishes all of us could do things out of the house, but it just doesn't happen that often. A trip to Costco or Delicious Orchards ranks up there as the best trips with Lucas. The doctors didn't really want Lucas to be outside for any length of time with the heat or humidity. For a few days we had to stop using the Huggies wipes when we changed him and had to use 4 x 4 gauze with Dove soap. We found some wipes with practically no harmful chemicals and the doctors gave us the OK to use them. They have also limited us to one cream, also with very natural ingredients. The days are long and the nights aren't any better, but we plow through each day as a team doing what has to be done.
We generally update about Lucas and how he's doing, but we've never mentioned the other battles with medical bills and the daily EOB's that we try to stay up with. In the past 4 years with Lucas, we've dealt with numerous hospitals, doctors, prosthetic and equipment dealers, and as long as they've been Horizon providers, things have eventually worked out. However, we've been getting kicked around by some old medical bills from Hackensack Med Center. Every surgery and pump procedure we had done at Hackensack, we had to get approval from Horizon before Lucas went into the OR. The Neurosurgeons at Hackensack (out of network) always took the customary fee and signed off on any balance. That was our agreement. When Lucas had his spinal surgery (Rhyzatomy) in July, 2004, that was his last procedure. A long story short, Hackensack has been harassing us and giving us a lot of problems. They're requesting the balance of $30,000 that they originally waived. They've been paid $32,000. After numerous calls with doctors, billing and insurance, they've informed us that they're not going to stop for the money. They say that a new group took over July 1, 2004 and don't give any writeoffs. Dr. Mazzola, who did the surgery quit Hackensack over these disputes and said she can't help us, but she informed us that they have been very aggressive and relentless with other families. We wonder if Don Imus knows he's putting his name on a building where the people inside are more concerned about the money than the kids. One family lost their child and they still aggressively went after them. We contacted our family friend Mr. Gale and he's helping us get this settled, no matter what it takes. A few other issues are now happening with Horizon due to Hackensack. It's enough taking care of Lucas 24 hours a day and yet have to deal with these other situations. It's frustrating, but we're just taking it in stride and staying focused on his care and keeping things as normal as we can for Abby.
With Father's Day here tomorrow, we're just grateful that Lucas is still with us and fighting as hard as he can each day to remain with us. We're proud of his courage and mostly proud of his ability to laugh through a tough day. We have to keep him laughing and smiling! Happy Father's Day! Godspeed!
Wednesday, June 7, 2006 11:28 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
In our last update, we indicated that Lucas was taken off the Prednisone for the 1st time since his transplant. Things went down hill very fast. His skin irritation, dryness and rashes flared up all over his body. We attacked it with the creams and switching shampoos/soap. We took him into Dr. Grossman, Dermatology, and he made another suggestion, but his skin didn't get any better. From the scatching, he was bleeding any where he could reach. We emailed pictures to Ginny at CHOP and she told us to stop all creams and only use Dove soap for washing. He became very dry and uncomfortable. Giving him Valium didn't settle him down. The rashes got worse on his butt, back and head. Ginny told us to get to CHOP first thing Tuesday morning. Dr. Applenc, Dr. Brown and Ginny saw him ASAP. They didn't like what they saw. They wanted him in Isolation and examined him thoroughly. They were convinced that this was full blown GVHD, not anything contagious. They spent a good amount of time with us and discussed a game plan. We could see the concern on their faces.
They decided to start with 30MGS Prednisone/Steroids each day right away to give his body a boost. (He ended last month on 5 MGS every other day.) They also put him on Cellcept in conjunction with his existing Prograf. He's now on 2 immune suppressant meds. Since his blood pressure was high, they put him back on Norvasc. We started the fungal med, Fluconazol last Friday, just in case some the rashes were fungal. We're also giving him Atarax at night and as needed to control the itching. The hope is that over the next week, this game plan will bring everything under control, then we'll determine what's next. Also, we'd like to get him back off the prednisone in hopes that the Cellcept & Prograf will keep the GVHD under control. We are really hoping this works and that Lucas can be comfortable again and return to school. He's had some tough nights and has managed to hang in there once again. It is not common for children to have GVH this far (3.5 years) post transplant. This is a very serious condition for Lucas and must be dealt immediately. We now have to go weekly to CHOP as they must keep a close eye on him. Ginny our Nurse Practitioner has given us her home number to call anytime. She is amazing and very understanding of Lucas and us. It really helps to have someone as caring as her in our lives. She sees the medical issues he's dealt with for years and understands that Lucas also has many physical issues with bones, scoliosis, etc. Unfortunately, those issues have to be put on the back burner for now. No body vest, no hand/leg splints, no PT and no going outside in any humidity or heat. If he's well enough, we can take him to school as long as the AC is working everywhere. The days are just as long and demanding as his transplant days. Please keep Lucas in your prayers that all of this works! God Bless!
Saturday May 13, 2006 12:01 AM EDT
Happy 12th Birthday Lucas - May 13
Lucas celebrates his 12th birthday today. We are planning a small family cookout and spending it home. On Friday, his class went up to Somerset, NJ to spend Special Education Day at the High Road School. Dad and Lucas drove up and met his class. It was a wonderful day for Lucas and his class. There was a Brazilian Carnivale Band with the steel drums and dancers and when they found out it was Luke's birthday, they sang a Brazilian style brithday wish which lasted 10 minutes. He was smiling and banging the tamborine. The class went inside where this school had a dance studio. Lucas, classmates and teachers were dancing and shaking to rap songs. Can't remember last time Lucas was so entertained without needing television. Most things don't hold his attention, but today he didn't needed any cartoons. We also found out that he'll be in the same class next year with the same teachers and support staff and that was great news. Several of the children, Qaseem, Kavine, Moises, Daniel, Jordan and his girlfriend Corrielle are great for Lucas and they call him the Monkey. When we drop him off each morning, they enjoy seeing us come in the classroom and are used to seeing us accompany Lucas on class trips.
This past week, Lucas had his neurology meeting at school with Dr. Barabas and Mom. Dr. Barabas showed Mom his MRI's from Sept, 02 compared to March, 06. There was significant damage and deterioration to this brain stem, but Dr. Barabas feels that most of this damage may have occurred a few years ago and that possibly nothing has gotten worse since then. He was extremely pleased with Lucas's alertness and humor. He thought it was great that he moans when a commercial comes on and that he laughs so much at jokes and our type of humor. It was bittersweet to see what MLD has done to his brain, but yet to hear Dr. Barabas mention how pleased and amazed he is with Lucas's mental condition. He said the only explanation he can give is that he must receive a lot verbal stimulation at home and school and to keep it going.
Lucas had his 9 week visit to CHOP on May 2. They can see his skin irritations are a constant thing and that we have to remain diligent with the creams, etc. There's some confusion as to how much is GVHD and psoriasis/dry skin. It was a good appointment for him and early the next morning, they called us to inform us that at their afternoon transplant discussions, the BMT team thought it was time to stop the prednisone, since the dose was now so low. This past 5 days was the first time since Dec, 2002 that Lucas has not taken steroids and he's reacted very well so far. His scalp is very dry and he is itching behind his ears. He has numerous cuts and scabs from cutting himself, but we don't think this is related to the steroids. He's been working very hard at PT and his weight is around 77 pounds. We've been testing a slider for getting him from his bed into his chair. The only need for that would be if Mom needed to get him to bed for changing.
Last Saturday, Gethsemane Lutheran Church in Keyport held another Spaghetti Dinner fundraiser for Lucas. Everyone was glad to see him and he had a great time. Lucas went there for his 2 years of preschool and still holds the record of 4 consecutive days sent to the time out room. He's still proud of that distinction. His other distinction at 2 1/2 years old was being thrown out of a day care facility after striking the teacher, we were told. It was part of our socialization process for him, but it wasn't until he went to Good News Preschool did he develop into a calmer child. We still feel that experience helped him manage in school. In Minnesota back in Oct, 02, while meeting Dr. Krivit and Lucas having many physical and intellectual tests, the doctors determined that the onset of MLD probably started making its presence when Luke was about 3, but yet he still maintained his school work until everything fell apart in Sept, 02. They were perplexed how he was able to hang in there so long and not show any major deterioration.
We were very lucky to get Lucas the last Botox appointment in June with Dr. Armento. Dr. Armento agreed with Dr. Barabas in raising Lucas's Baclofen dose in the mornings and keeping it there. We are having a difficult time each day with his body vest as he's in it most of the day and sleeps with it. At times, we wonder if the spinal cord surgery would make everything easier for him, but we must weigh putting him through the surgery and him not getting through it, as opposed to the daily hassles for him and us with the vest.
Abby is doing well with school and jazz and having fun with softball. We are really pleased with how she fits in with the other kids in our neighborhood. It's a great mix of kids and she's normally outside playing. We try to bring Lucas outside to watch. She wants him at her ballgames. With Mother's Day this Sunday, our thoughts and prayers are with our friends and their families who have lost children to MLD and other diseases. We may not always write, etc., but we think of you guys all the time and we appreciate your encouragement to keep fighting. We also want to reach out to the families/friends who do the best they can each day like us in caring for our MLD children. God Bless!
Sunday, April 23, 2006 9:56 PM CDT
Thank you for checking in Lucas!
It's been several weeks since our last update. With tax season ending and trying to catch up on home chores, we haven't had much time. We appreciate everyone posting a message for Lucas. We hope everyone had a nice Easter and Passover.
Lucas has been doing pretty good these past several weeks. With lowering his prednisone this last time, he's reacted very well and his skin has held up with just a few rashes with the help of the many creams applied each day. He's gone to school every day except for the 6 days off for Spring break and a few for his congestion. He has been suffering from allergies and even with the Zyrtec, he's been gagging and having a hard time loosening up the phleghm. We've been using the suction machine more and he's had several nights of gagging/choking throughout the night. CHOP has informed us that transplant children sometimes develop allergies. Lucas has been doing well with physical therapy and is making progress with his strength. He did have to have Xrays done a few weeks back as he had a rough day at school and they were concerned about his hip displasia acting up. They showed he had dislocated his right hip and we stopped the PT for one week. He was put on Aleeve 2 times a day for the pain and swelling.
On the last day of tax season, all 4 of us went to Red Lobster for lunch. Lucas enjoyed sucking on a breaded shrimp, shrimp scampi, and grabbing the lobster shell. We made sure he didn't swallow anything, but it looked like he wanted to. We can joke to him about these things that he used to love and yet he'll laugh and go along with it. We talk to him about many things he used to do or eat and we can joke about it. We don't feel there's any sadness on his part about those days. Abby has been helping Lucas with OT and just being there for him.
We also want to thank the many clients who donated to The Lucas Fund. They continue to help with the medical expenses and many of the clients were able to see Lucas this year for the 1st time. Also, once again our family wants to thank all of our friends at Gethsemane Lutheran Church/Good New Christian Preschool for again holding a fundraiser for Lucas. This is the 4th consecutive year they are helping our family and this time they are having a Spaghetti Dinner on Saturday (5 and 7pm), May 6 at the Church located at 60 Maple Street in Keyport, NJ. We can't begin to express the thanks to the people who continue to support and love Lucas after 4 years of his fighting this disease. It really does make a difference in his life and ease our burden in taking care of him. God Bless!
Wednesday, March 15, 2006 8:36 PM CST
New Photos in Album April 12th.
Thank you for checking in on Lucas!
Lucas has had a number of appointments the last month. He had his regular visit to CHOP which went well, a number of PT visits, dermotology Dr. Grossman, pediatric dentist, neurology Dr. Barabas, physiatry Dr. Armento and several calls to Dr. Teitlebaum gastro. He's overall been doing OK the last 4 weeks. He's only missed about 3 days of school. The spasms have not been as severe, but still occuring regularly. We have lowered his prednisone/steroids from 12 mls to 7.5 mls. Unfortunately, we're seeing some GVH flare ups with his skin and we're applying the creams to combat it. He's been experiencing bouts of frustrations and yelling, mostly during commercials or when he's not happy with an activity. He's been on prednisone for so long, we've forgotten about the adverse reactions of lowering it. He's experienced bouts of "roid rage" as it's called with going off the steroids. We saw this with him in Minnesota 3 years ago. He's very loud and can scream right up until we get his attention or put on another cartoon. Howeveer, lowering the prednisone is very important and we have to continue getting him off it. We know it's caused a lot of weakness with his bones, but it's a vicious cycle. We hope to keep lowering it gradually without any adverse side effects. Lucas now weighs 75 pounds, but he feels more like 100 when he has his body vest on. His new vest should be ready very shortly.
This time of year with Dad's busy tax season going on, does put extra strain on everyone. With driving Lucas to school, spending more time getting him ready, his many appointments and Abby being busier and attending art therapy, we're doing our best to manage this period of time. We've tried to get to Pennsy once a week to see Pop in the hospital and he's doing better the last few days. Mom carry's most of the burden with Lucas and Abby in the mornings this time of year. In some ways we feel fortunate, in others we wish it wasn't so busy and demanding for the 3 months. Generally, after April 15, things aren't so busy and it avails more time for Dad to help with Lucas and generally just get chores done around the house and keep Lucas stimilated with talking to him and avoiding the commercials on TV. We still try atleast once a week to get out for breakfast after bringing Lucas to school. Somedays are worse than others, but we're working together to keep the days upbeat and helping each other emotionally when the low points hit. Abby starts softball in 3 weeks and she's enjoyed indoor soccer over in Red Bank. Tonight she told us that sometimes she hears a sad song and she thinks of Lucas.
Please continute to pray for the children who do their best like Lucas to get by each day and for the children who fought this disease so courageously and have gone to a better place. God Bless!
Friday, February 17, 2006 3:05 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We had Lucas home from school the last 3 days. On Tuesday, we received a call from school only 1 hour after dropping him off that he was feeling warm and very restless. We went straight away to find him spasming and gave him valium. This seemed to settle him and we let him stay so that he didn't miss his Valentines party. We kept him home on Wednesday as he wasn't doing well in the morning. Around 8 that night, he went into severe spasms, but the valium didn't work. We had to wait a few hours until we could give him some Atavin, which also didn't work right away. We held him and stayed with him until around 2:30 am when his body gave in and he fell asleep. We blamed his BM's for causing it so we were concerned and had some stool samples tested for C-diff the next day. Today they came back negative which is good and he's been more alert and settled the past few hours. He has spasms everyday, but some days are very bad and he can't settle. While experiencing a spasm, he will cry and scream. This is about the only time he cries. Strangely, during a spasm he can also find a way to laugh at something. It's hard to figure why, but he can turn right into laughing from crying.
Dr. Krivit had explained to us back in 2002 before Lucas started to decline that he's seen some children with MLD where the part of the brain that triggers laughter and humor takes over and what we find as sad or negative, he'll find funny. That seems to be with Lucas. Watching him fight, shake and stiffen up with spasms over 5-6 hours straight is not easy, but he deals with it. He will yell and cry through it all, then for a few moments he'll laugh at a cartoon or something we say.
We've had time to digest his Orthopedic consult last month at CHOP and right now, we feel the risks are too much for him and have decided not to pursue it. His new body vest is coming in shortly and we plan to be more diligent in keeping him in it during the day. One of the problems with it however is when he has a BM. The vest does complicate that job in cleaning him. After reflecting on the meeting, we felt the doctor really didn't want to perform the surgery and that the risks were too great. Our goals for Lucas, are short term and doing what's best for him now and trying not to comtemplate issues that will come up down the road. His visit last week to Monmouth MC for his IV went well and Dr. Fisher was very happy with his skin. Mom is very patient and persistent in applying all of the creams/ointments each day. He still has GVH flare ups, but we're keeping them at bay. Lucas now weighs 75 pounds and is fighting very hard to move his left arm. His fingers are very stiff on that hand but he's moving it more than before. He works very hard at PT and with his computer device.
One of the issues that comes up with conversations with people from time to time are the benefits a family receives with a child like Lucas. People seem to think that the fed and state gov'ts open up their checkbooks and services for families, but not in NJ. Some people assume kids here get SSI, medicaid, etc., but nothing. Atleast nothing we've looked into has worked. The state denied us assistance with our van and there are no other programs to help. Lucas is very fortunate to have a great school like Schroth that he can attend and we're very grateful for that. One good thing about Monmouth County is that they do provide excellent special needs programs and invest the money to take care of its own. There's no respite care, or atleast none that doesn't take 3 years to apply for. What's most important to Lucas right now is his school and the interaction he receives there. His school is a special place and we're there twice a day when he attends. Watching the kids and adults there cope each day is very humbling. They're happy and content for the most part. It's become a big part of our life and Abby's too. We prefer to exhaust our energies on caring for our kids as compared to getting caught up in the beauracracies of today.
Abby started her 2nd term with Art Therapy over at Riverview Hospital. She met two sisters there whose mother had terminal cancer. She's had playdates with them and they get so excited when they get together. Unfortunately, we were told yesterday that their mom passed away on Tuesday. Dad and their father took the kids out and met at Art Therapy. We hope to keep in touch and help in any way we can. Lucas and Abby's Pop turned 85 on Thursday and celebrated by waking up for the first time in 7 days after having open heart surgery last Thursday. He finally came off the ventilator and today he only needs a oxygen mask. Hey Luke! Hey Brat! The doctor said he's the most stubborn man he's come across, but that's the reason he pulled through. We think that stubbornness runs through the family. One day at a time! God Bless!
Friday, January 20, 2006 5:49 PM CST
QUICK UPDATE.
THANK YOU FOR CHECKING IN ON LUCAS!
WE MUST BE BRIEF AS WE LOST OUR LAST UPDATE AND CAN'T AFFORD THE TIME. LUCAS'S VISIT TO CHOP TODAY WAS NOT WHAT WE HAD HOPED FOR. WE KNEW EVENTUALLY HIS SCOLIOSIS WOULD BE A MAJOR ISSUE, BUT HIS CURVITURE IS NOW 60 DEGREES. THE WINDOW FOR SURGERY IS NOW THROUGH THE NEXT 1-2 YEARS AND IF WE WAIT, HE WON'T BE ABLE TO HAVE IT DONE. DR. FLYNN SAID LUCAS IS AT THE HIGHEST RISK FACTOR FOR COMPLICATIONS WITH HIS SPINAL SURGERY AND HIS BODY MAY NOT BE ABLE TO TOLERATE ANY RODS OR PINS. WE TOOK THE RESULTS TO GINNY AT BMT AND SHE SAID LET'S WAIT 6 MONTHS AND SEE IF WE CAN GET LUCAS OFF THE PREDNISONE. DO NOTHING RIGHT NOW. NO SURGERIES AS LONG AS HE'S STILL ON STEROIDS. DR. FLYNN SAID LUCAS IS A VERY COMPLICATED CASE AND WE MAY NOT EVER WANT THE SURGERY PERFORMED WITH ALL OF THE RISKS. FOR MOST KIDS, THIS IS A MAJOR SURGERY WITH SOME COMPLICATIONS. WITH LUCAS, HE SAID THERE ARE MORE ISSUES TO DEAL WITH AND BE CONCERNED ABOUT. LUCAS'S ABILITY TO SOMEDAY BREATHE ON HIS OWN COULD BE COMPROMISED.
It's been about a month since we last updated. The holidays came and went. Lucas and Abby had a nice Christmas and Chanukah and spent Dec 25th in Pennsylvania with family. Our van was acting up that weekend so we put Lucas in the Jeep with his tumblefoam seat. He sat up very well going out. It's been his longest ride not being in his wheelchair in almost 2 years (excluding all the ambulance journeys) but coming home he had trouble keeping his head up. He did manage to keep it up enough to watch Scooby Doo on the portable DVD. Lucas's favorite gift was his Cuddle Chimp that he saw on TV. Every time he would scream aloud when it came on and he cracks up each time with it.
Lucas had his visit to CHOP back on Dec 27. His counts and his skin looked good. They lowered his Prednisone from 17.5 mls down to 12.5 and kept all the other meds the same. So far this past 2 weeks his skin has looked good and no adverse affects as with prior times in lowering the steroids. As we discussed with the doctor, one step at a time and small gains. No need to push anything. Maybe we get him off the steroids and then we work with lowering the Prograff even more. He still got his IV antibiotic and that last visit it took several sticks of the needle by 3 different people find a good vein. We miss the port when this happens. Lucas now weighs 72 pounds and is very firm. He's getting stronger with the help of PT.
He's been going to school every day. Each day we give him his Prograff 1st thing in the morning, wait 30 minutes then give him his Prevacid and then wait 30 more minutes and then give his other meds with 300 mls of feeding going through his pump. We change his diaper twice during that time and when his feed is done, we put on his body vest and then his clothes. By the time we get him in his wheelchair, brush his teeth, board him on the van and then drive him to school, it's about 10:15 when we wheel him in the classroom. He misses some things, but it's the best we can do and that's the routine for now. We leave home at 1:45 to pick him up at 2:15 and get him right home to bed. One day a week he goes directly to PT. We still feel it's worth him getting to school each day, even though he's only there for about 4 out of the 6 hours.
Next week, Lucas has his Botox injections with Dr. Armento at Newark's Beth Israel Hospital on Tuesday, on Thursday he gets his IV antibiotic at Monmouth MedCtr and on Friday we take him back to CHOP for his orthopedic consult that was canceled in December. A busy week for him. We're a little apprehensive, because we feel he's been doing pretty good ever since the major surgeries stopped. Knowing his Scolosis must be dealt with in some way doesn't leave him many options. This will be Lucas's 3rd consult with this and his feet. Whatever they suggest must first be approved by the BMT staff at CHOP.
We'd like to thank everyone who sent cards over the holidays and who made postings to the website. Dec 19 marked Lucas's 3rd year anniversary for his transplant. Also, thank you to Dennis McGinnis from Jason's Dreams for Kids in Red Bank for easing our financial burden this holiday season and for the wonderful boat ride with Abby up to Manhattan. Lucas couldn't make it as the noise and rough waters are too much for him. He also invited us the next day to a concert in Red Bank put on by country singer Kevin Sharp. Mr. Sharp survived bone cancer as a teenager and comes up each year for the local kids and families. Lucas sat through the entire concert and he got to see Max Weinberg (Late Night with Conan O'Brien) sit in for 4 sets. We'd like to thank Tom Caruso from the Ye Olde Pie Shop in town here for helping Mom when the van broke down. He left his busy holiday baking to drive to Lucas's school and help, plus he brought some Italian cookies to boot. Also thank you to Lucas's PT's Jon Andrus and Janice Volk for their generosity and dedicated work these past 3 years with Lucas. We truly appreciate the help and support Lucas and our family still receives from so many caring people. God Bless!
Sunday, December 11, 2005 10:51 AM CST
THANK YOU FOR CHECKING IN ON LUCAS!
Before we begin, we have recently learned of more sad news. Dr. William Krivit passed away. He was about 82. We first met Dr. Krivit in October, 2002, after Lucas was diagnosed and we were referred to Dr. Krivit at the Univ. of Minnesota. Dr. Krivit was the foremost authority on the Leukodysthrophies and spent many years researching these diseases and giving his all to help our kids. He was a native of Linden, New Jersey and he vacationed in Deal, NJ about 4 miles from our house. He joked about growing up by the oil refineries on the NJ Turnpike and the Jersey Shore.
When we met him that week in Minneapolis, he was someone we learned right away to not pull any punches to be upfront and blunt. After a week of tests for Lucas, the day before we left for home, we had a meeting with him, Pat his NP, and Lucas. The week was spent determining if Lucas was a candidate for a stem cell transplant, his only hope. His first words at the meeting weren't hello, but to this effect, in my opinion, Lucas will deteriorate very fast and I give him 12 months to live. He felt Lucas was very far along with the disease and although a tough decision, he recommended Lucas for a transplant. He would have preferred that Lucas be stronger and earlier in his diagnosis, but he left it up to us. We were left with no choice but to say yes. The one thing we remember and won't forget was how enthusiastic he was with Lucas's transplant and how well he was doing. Lucas was discharged 22 days post transplant and became an outpatient for what we thought the next 80 days. His counts were doing well and he was getting stronger. But, in February, 2003 that all began to cave in. Lucas was not doing as well, his speech was going away, he stopped using a walker and his appetite was declining. He told us he doesn't know why things changed for the worst so fast and that it was devastating. He had always told us that the goal of the transplant was to buy time and to hopefully save Lucas's mind and that physically it was up to God. He told us to take Lucas home on Feb. 26 and make him comfortable and be with family and friends (only 70 days post transplant). From our perspective, we saw him really care and feel for Lucas. He knew what was to come down the road. By the middle of March, Lucas, couldn't talk anymore, couldn't eat, and lost all physical abilities. But, he was right in that we saved Lucas's mind. He lost many functions, but he was alert and knew his surroundings. To us, that's the miracle Dr. Krivit gave Lucas. He's still with us 3 years later, and although each day is a struggle and an up hill battle, he's here with us. He definitely will be missed in helping find a cure for our kids!
Lucas has been still been suffering with congestion and a hacking cough. Last Tuesday, he was examined at Monmouth MC by Dr. Fisher just prior to his Pentamadine IV and she said his lungs sounded clear and it was all in his nose. Lucas was also scheduled for an MRI that afternoon at the request of his neurologist as one has not been done since his transplant. The MRI technicians were able to tell us that his sinuses were clear and as Dr. Fisher had thought if they were clear, it's probably allergies. That can be common with transplants. He was put back on his Zyrtec and will stay on it for the near future. He's not been sleeping well and has been up practically every night. His spasms have been more frequent and more severe and he just battles through them. We have increased his Valium intake in hopes to keep him more comfortable. His orthopedic appointment this past Friday was canceled to next month due to the snow in Philly.
Today, we're going downtown with Lucas and Abby to get our Christmas tree and have pictures taken with Santa. With the cold months here, we don't get out of the house too much and must be more careful of Lucas's environment with germs. Abby finished her Art Therapy classes on Thursday and she met some nice kids there. She's been doing better in school and starts Sunday soccer in a few weeks. We'd also like to thank family and friends who helped Mom and called to check in on things during the week of November 28 when Dad was away. We want to wish everyone a Happy Holiday Season. God Bless!
Tuesday, November 22, 2005 2:14 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We know many of you who check in on Lucas, also, follow several other children's websites who have MLD, especially the Trimper children from Michigan. We have known their family since December 2002 and have shared feelings and ideas these past 3 years. Many of you know by now that Maddie Trimper passed away earlier this month at Sloan Kettering Hospital in New York City. She was very strong and courageous and fought so hard against the many complications from MLD and the transplant. We ask for your prayers and thoughts for Jane and Jeff as they carry on with caring for Max and Sam.
As we write this update today, Lucas has been home this week with Bronchitis and Pink Eye. He's slightly congested, but he's had a hacking cough for about a week. He had his visit at CHOP last Tuesday, but he was fine at that time and his check up went well. He's very used to his Pentamidine IV infusion and has no complications from it. But, as the week wore on he developed a hacking cough and CHOP told us to take him to his local doctor yesterday. He heard the congestion on Lucas's right side and put him on Zithromax, but was unable to prescribe a cough medication due to his high blood pressure and CHOP wants his cough to be productive and work its way out of him. If it doesn't improve, we're to take him for chest X-rays on Monday. He's tired and a little run down as he's been to school everyday since our last update. CHOP decided to lower the prednisone from 20mg every other day to 17.5mg. Dr. Bunin does not like the fact that he's still on it, but it's the only medication they've been able to lower at this time. Our goal is to lower it every 6 weeks with our visits to CHOP and hope that the Graph vs Host Disease does not flare up.
In early December, Lucas has another appointment at CHOP with their Orthopedic Department to evaluate his scoliosis. The BMT has some concern that the curviture might start to interfer with his breathing ability. Last year he was evaluated by a local doctor recommended by Hackensack UMD and his curviture then was 46 degrees and he did not recommend any surgery at that time. But CHOP said if it gets close to 60 degrees, we may have to consider surgery to place a titanium rod in. The problem right now is that he is not strong enough to fight off the potential complications due to his immune system and GVHD. We hope the visit goes well and that the curviture has not increased.
Have a Happy Thanksgiving. Godspeed!
Tuesday, November 22, 2005 2:14 PM CST
THANK YOU FOR CHECKING IN ON LUCAS!
We know many of you who check in on Lucas, also, follow several other children's websites who have MLD, especially the Trimper children from Michigan. We have known their family since December 2002 and have shared feelings and ideas these past 3 years. Many of you know by now that Maddie Trimper passed away earlier this month at Sloan Kettering Hospital in New York City. She was very strong and courageous and fought so hard against the many complications from MLD and the transplant. We ask for your prayers and thoughts for Jane and Jeff as they carry on with caring for Max and Sam.
As we write this update today, Lucas has been home this week with Bronchitis and Pink Eye. He's slightly congested, but he's had a hacking cough for about a week. He had his visit at CHOP last Tuesday, but he was fine at that time and his check up went well. He's very used to his Pentamidine IV infusion and has no complications from it. But, as the week wore on he developed a hacking cough and CHOP told us to take him to his local doctor yesterday. He heard the congestion on Lucas's right side and put him on Zithromax, but was unable to prescribe a cough medication due to his high blood pressure and CHOP wants his cough to be productive and work its way out of him. If it doesn't improve, we're to take him for chest X-rays on Monday. He's tired and a little run down as he's been to school everyday since our last update. CHOP decided to lower the prednisone from 20mg every other day to 17.5mg. Dr. Bunin does not like the fact that he's still on it, but it's the only medication they've been able to lower at this time. Our goal is to lower it every 6 weeks with our visits to CHOP and hope that the Graph vs Host Disease does not flare up.
In early December, Lucas has another appointment at CHOP with their Orthopedic Department to evaluate his scoliosis. The BMT has some concern that the curviture might start to interfer with his breathing ability. Last year he was evaluated by a local doctor recommended by Hackensack UMD and his curviture then was 46 degrees and he did not recommend any surgery at that time. But CHOP said if it gets close to 60 degrees, we may have to consider surgery to place a titanium rod in. The problem right now is that he is not strong enough to fight off the potential complications due to his immune system and GVHD. We hope the visit goes well and that the curviture has not increased.
Have a Happy Thanksgiving. Godspeed!
Sunday, October 30, 2005 9:14 PM CST
NEW Halloween Pictures
THANK YOU FOR CHECKING IN ON LUCAS!
Lucas has only missed 2 days of school in the last 3 weeks and that was mainly due to the weather during the week we had 8 days of heavy rain and the roads were bad. His heavy congestion has eased off some. He did vomit a few times last week and we think it was due to the congestion and it was choking him while he was lying down. We get him in his chair ASAP or just sit on the side of his bed holding him up until he settles. Otherwise, he has been pretty good overall these past 3 weeks.
Lucas had an Opthalmology appointment this past week. His eyes looked good and no cateracts. The doctor thought that Lucas could start wearing his glasses again, so we're looking into his options. We were supposed to take him to CHOP on Tuesday, but with another Nor'easter and the hurricane coming up the coast we called on Monday to see if we could cancel and book in his IV antibiotic appointment over at Monmouth MED CTR. As usual, the nurse practitioners at CHOP were very understanding as they once told us that it was up to our judgment whether to go to Philly if the weather wasn't cooperative. We took him to Monmouth on Tuesday and everything went well. His labs looked good, but his prograf level was again a little high, but they don't want any changes with his meds right now. Lucas also saw his Neurologist Dr. Barabas at school this past week and he was very happy with Lucas's overall appearance.
Mom continues applying the many ointments and creams to keep his skin feeling and looking good. It takes a lot of effort and time each day to keep his GVHD in check. We go back to Philly in 2 weeks for his checkup and next IV. For some reason, with Lucas receiving this IV antibiotic every 3 weeks, the time is going by real fast. There are no other effective antibiotics that Lucas can take to ward off any types of pneumonias. He's allergic to the 2 that we could give him through his feeding tube. Lucas has also been working very hard with PT. While sitting on a bench, if you roll a soccer ball to his right leg, he is able to time it and kick it. He's not as consistent with his left leg. He works on the hand held bicycle pedals and he can push them around 3-4 times at a clip. He still gets very frustrated and mad, but he keeps going.
Today was the Little Silver Fire Department Halloween Parade. Abby dressed up as a Devil, Mom was a Cat and both Dad and Lucas wore Killer Klown costumes. One of Lucas's favorite movies is the "Killer Klowns from Outer Space." For some strange reason, this movie gets him crying with laughter, so the father and son team was formed. One person actually knew who they were and Lucas got a kick out of it. They awarded Lucas, Dad and Abby First Place and the kids were given a V-Tech Computer. Tomorrow both kids have their respective Halloween Parades in school and then Trick-or-Treat afterwords. Lucas was very excited today and many people said they were so happy to see him. They say that he looks much more alert and stronger. Most of that credit goes to Lucas and some to Abby. She sure knows how to make him perk up and be happy. Lifting one's spirits with humor is great medicine. He'll let you know when he doesn't like something, but we try our best getting out, weather permitting to Abby's soccer matches, grocery shopping, movies, etc. Abby has been attending Art Therapy at Riverview Hospital in Red Bank. She seems to like it.
We also ask for your prayers for all of the kids and families who do their best each day to cope with these diseases, especially Maddie Trimper who is still in New York at Sloan Kettering. Godspeed!
Sunday, October 9, 2005 9:43 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
The last 4 weeks have been relatively quiet for Lucas. He's been to school every day possible except for 2 when he had some heavy congestion and we've been giving him Zyrtec since then. He's had a few evenings where the spasms and restlessness lasted 5-6 hours and the valium and ativan didn't work. We hold him and sit him up most of that time. It appears the only thing that works is time and how long he persists fighting until his body settles down. He had IV antibiotics on Tuesday at Monmouth and it went well. His blood counts looked good.
He had a checkup with Dr. Grossman (Dermatology) and he was happy with his skin. The 2 main areas of constant concern are his scalp and diaper area. He gave us some additional creams and so far the skin has been looking fine. Some of the creams and shampoos not covered by insurance he has suggested are pricey, but fortunately family friends the Swearingens who work at Johnson & Johnson have graciously given us a generous supply of those items.
Lucas has an Opthalmolgy appointment at the end of October. CHOP wants him checked for Cataracs. They told us it's something he should have examined since he's been on Prednilisone for 3 years. CHOP also booked an appointment with their Orthopaedic Department to have further examination of his spine to check for any increase in the curviture. As of a year ago, he had 46 degree curviture of the spine. They are concerned that if it gets to 60 degrees it could start causing some breathing issues.
Abby's been getting settled into 3rd grade. She's busy with soccer, dance and chorus. We keep her busy with playdates. Abby turned 8 on Sept 18 and we took her and Lucas to the Build-a-Bear. We try to do things with her alone, but she insists on Lucas being involved and we're trying to show her that Lucas doesn't have the energy to do many things outside the house and he's more comfortable home.
We ask for your prayers and thoughts for Maddie Trimper who has complications due to an Epstein Barr Virus mass. To check her website please go to www.caringbridge.org/mi/trimpermld . We also ask for your prayers for all of the kids and families who try to cope each day with these diseases. God Bless!
Thursday, September 15, 2005 2:45 PM CDT
FRIDAY, SEPT 23 - AT THIS TIME, WE ASK THAT YOU TAKE SOME EXTRA TIME TO PRAY FOR MADDIE TRIMPER WHO IS VERY SICK IN HOSPITAL AT THIS TIME.
THANK YOU FOR CHECKING IN ON LUCAS!
It's been almost 4 weeks since our last update. Lucas had his Pentamidine IV at Monmouth Medical Center on Aug 22 and his 6 week checkup/Pentamidine IV at CHOP this past Tuesday. Both appointments went well. His blood counts from each visit were acceptable. After his visit to CHOP, it was decided keep all of his meds the same except for his Prograf. They had some concern about his GVHD/rashes and found that his Prograf level was not in the therapeutic range. Ginny(Nurse Prac) decided to raise his dose and continue applying the various creams twice a day. Most of the concern is in the area around his diaper. He hasn't had any diarrhea, however, the flare ups can cause him severe discomfort. Ginny explained upfront that it is not the GVHD that is most harmful to Lucas, but various bacteria and infections that he couldn't fight off right now due to the fact he is still on immune suppressed medications. It will be almost 3 years in December that Lucas will have been on all of these medications and we keep hoping that someday he can come off them. Normal time on most of these meds post-transplant is 6-9 months.
We also discussed again that if Lucas has a temperature of 101.5 or higher, we must get him to the ER immediately. The cooler months are approaching and we must be much more aware of his surroundings and take more precautions. We covered a lot of ground on Tuesday. We were told to make an appointment with an Opthalmolgist as soon as possible. Also, Ginny is making an appointment with CHOP's Orthopaedic Staff for Lucas. We are looking into the possibility of having to get Lucas's curviture of the spine fixed. Right now, he is not a candidate for the surgery, plus we were told that by our local Orthopaedic surgeon, but we must monitor the Scoliosis so that it doesn't get much worse. He's now around 50 degrees, but major problems could occur if it approaches 65 degrees. We have no idea what we'd do if Lucas is never healthy enough to someday have the surgery to stop that problem. There are some things that we must look ahead to plan and ponder which means going away from our day to day philosophy.
We have been taking Lucas to school each day since Sept 7. We have been taking him twice a week for PT and he still gets one at home. He's been in the hot tub a few times, however, we've kept him out the last 2 weeks with his GVHD. He has been alert and many people feel he looks good and is happy. With the weather cooling off, we can get outside more. Abby has been doing well with school and soccer. She turns 8 on Sept 18. She's a young 3rd grader and loves her big brother so much and kisses him each morning before getting on the bus. This year is not as crazy in the mornings with having to get Abby off to school at 7:30 and then get Lucas on his bus at 8:15. By the time we get his meds and feedings done, changed him, brush his teeth and cream him up, we're off to school by 9:30. We pick him up at 2:15. It's still a long day for him, but they say he enjoys his day at school.
Some of you who read Lucas's site, continue to help and support us in many ways. We thank you for that. When we've asked for help in supporting the MLD walk, you were there. Next Friday will mark 3 years since Lucas was diagnosed. So many of you haven't forgotten and still let Lucas know in some way that you care for him. We have to play the cards we were dealt and not look back. Lucas struggles each day is some form or another, but spends most of it laughing and being strong for us. Please continue to pray for Lucas's friends and their families to manage each and every day. God Bless!
Sunday, August 21, 2005 8:45 PM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
For the last 3 weeks, we have had Lucas in school all but 3 days. He's been doing pretty good even though his left side has been a bit stiff. It's become a routine for us getting him ready and driving to school and turning right around for home. In 2 hours we leave to pick him up and bring him right home or go straight to physical therapy twice a week. We inquired with our school district about getting some help driving him back and forth. We're getting hammered with gas and wear/tear on the van. When we found out months ago that it costs about $30,000 a year to bus Lucas to school and the fact they still pay even when he's sick or in hospital, we told the school to cancel the bus. Plus we were reaching a point with his health/immune system that we weren't very comfortable with the van and germs from the other people. In any event, the school informed us that we are entitled to a daily reimbursement and they proposed a generous allowance. It's a win win for us and the school district.
Lucas has had his normal weekly therapies and no other appointments except last Tuesday when he had his normal round of Botox injections by Dr. Armento at Beth Israel in Newark, NJ. The hospital staff is very friendly and getting to know Lucas. He had the same Anesthesiologist as last time and the whole procedure went very smooth. The 3-4 days before the Botox, we noticed Lucas stiffening up, so we knew he was due. Amazingly, Lucas woke up with no problem, we got him dressed and we were on our way home in an hour. As with his endoscopy, he bounced right back. He knows the drill for being put to sleep and he's been handling it very well of recent.
We have been taking Lucas in the hot tub and he's been enjoying it. With the heat and hazy temps, aside from a trip to Costco or the Mall, the hot tub just before bed time when it's a little cooler is one of the few things we can do. Except for school, most days we just stay home due to the heat. We play games with the kids and try to pass the time. We have been out for a few more rides in the evening with the Jeep and he really has a great time with it. Abby has been kept busy with playdates and she doesn't really mind staying home playing with her dolls and games. She starts soccer next week with Dad and we've had her in the back yard practicing for several days.
Next weekend, Mom and Dad are heading up to the Poconos for the weekend to celebrate their 15th wedding anniversary. Aunt Kathy (RN-Cardiology), cousin Wendy and Grandma are taking care of Lucas and Abby from Fri to Sunday afternoon. They have been over to learn the routines, his feedings, meds and lifting Lucas in and out of his bed and wheelchair. It will be the first time in several years that both of us will be away for the night from our kids. A big thank you goes out to cousins Susan and Tom Wilkins from the Poconos for booking (and paying for) the weekend for us at Cove Haven Resort. It was Susan's idea and she made us realize that we need a little time to ourselves. We greatly appreciate their generousity.
Tomorrow morning, we take Lucas to Monmouth Medical Center for his 3-week Pentamidine antibiotic IV infusion. It has been going well for him, but the only problem has been for them to find a good vein. As of today, Lucas's medicines are: Pentamidine every 3-weeks, prograf, prevacid, prednilisone, baclofen, acyclovir, penicillin, norvasc, magnesium and valium/ativan as needed. He's unfortunately having a flare up of his GVHD and we're back to applying many special creams to combat it. Lucas is about 2 3/4 years post transplant and we still can't get him off these medications. But overall, he's doing pretty good and he's alert and laughing. Please pray for our friends and their families to do the best they can each day. Godspeed!
Wednesday, August 3, 2005 11:59 AM CDT
THANK YOU FOR CHECKING IN ON LUCAS!
LINK TO BRICK WALK PHOTOS AT BOTTOM OF PAGE
It's been about 3 weeks since our last update. We want to begin by first thanking everyone who walked and pledged donations for the Stennis Foundation/Tomaino Childrens MLD Walkathon on July 23. Several families from town came out and many people made pledges making the day a success. The gathering afterwards at Moms' parents house was also great. On Friday night, Lucas was paid a visit at our house by Rhonda Franchiseur (Nathan's Mom) and Carolyn Wyman (From Michigan - Trimper Children). Mom had a nice Friday evening out with everyone before the walk. Trish Knight who sponsored the race from Stennis (Texas) saw Lucas on Saturday. His smile and laughter in person is something. Lucas made it through the walk and he appeared to have a good time. We are still receiving donations and plan to submit them shortly. Thanks again.
Overall, Lucas has been doing very well. We take him to school each day. He had his Endoscopy a few weeks ago and it showed a Grade 1 GVHD in his gut. CHOP told us that it is the lowest grade and not to worry. His diarrhea has subsided and he's just doing the best he can each day. The spasms come and go through the day and we're giving him Atavin and Valium. His Tuesday visit at CHOP went well and they were very happy with his appearance and alertness. His IV antibiotic went well and Abby joined us this time. She was by Lucas's side for each of his appointments. All of his meds stayed the same except for lowering his Prograff one mil. Lucas goes to Newark in 2 weeks for his next Botox procedure. He's been getting his PT 3 times a week and we've been doing our part at home working with him. His dental appointment a few weeks ago went well and no cavities. The doctor was impressed with his teeth and the work that goes into trying to brush them and his tongue.
We would like to thank Mr. Steve Schmelz, owner of Seaview Jeep in Ocean Twp. We needed another car as we're putting too many local miles on the van (especially driving Lucas to and from school) and Dad's car is 12 years old. We went to Mr. Schmelz and not only got a great a deal on our Jeep Liberty, he also took another $2000 off for Lucas which made the purchase that much better for us. We got a 4x4 to get to appointments, pick up meds, etc. in the bad weather. On Sunday we strapped Lucas into his tumblefoam car seat in the back and went for a ride and he was extremely vocal and excited. It looked like he couldn't believe that he was actually sitting in a car. It's the first time 1.5 years that he sat in a car. Seeing his enjoyment, truly made the new car well worth it.
Also, since Lucas moans and grunts with commercials, Abby nicknamed him "Mona Lucas, Mona Lucas". You have to keep things a little crazy and different to get by each day. Please pray for our friends and their children who do their best to get by each day and cope with these terrible illnesses. God Bless!
Thursday, July 21, 2005 10:02 PM CDT
SEE LINK TO MLD WALK PICTURES BELOW
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MLD WALK ON SATURDAY JULY 23. IF YOU HAVEN'T REGISTERED ONLINE AND WOULD LIKE TO PARTICIPATE, REGISTRATION IS AT 8:30 AM AT OCEAN COUNTY PARK. THERE SHOULD BE BALOONS IN THE VACINITY OF THE PARK SHOWING THE WAY. THE WALK STARTS AT 9:30. IF YOU HAVE PREREGISTERED, YOU DON'T HAVE TO ARRIVE UNTIL AROUND 9:15. IF YOU WOULD LIKE TO SEND A DONATION, IT DOESN'T HAVE TO ARRIVE BY SATURDAY AND ALL YOU HAVE TO DO IS SEND A CHECK PAYABLE TO "STENNIS FOUNDATION" AND MAIL TO OUR ADDRESS BELOW. WE DEEPLY THANK EVERYONE WHO IS WALKING OR DONATING TO HELP WITH RESEARCH!
Thank you for checking in on Lucas.
The main thing right now with Lucas is just waiting to hear back from some of the biopsies from his endoscopy this past Monday. We took Lucas to the same IV Day Room at Monmouth Medial Center where Dr. Teitlebaum performed the tests. Lucas received some light sedation and the procedure lasted about 15 minutes. He did very well and woke up right away to his Video Now tapes. We were able to leave in an about an hour after the nurses saw that he could tolerate his medicines and a feeding. At first glance, Dr. Teitlebaum said things looked OK with no ulcers, but some irritation in his small intestines. On Wednesday, he called to let us know that the pathologist said there was grade 1 GVHD in his gut. The slides have been sent to Dr. Bunnin at CHOP and we are waiting for her to read them and decide on our next course of action, if any.
The diarrhea is all but gone now, and Lucas returned to school on Wednesday. We are hoping he can enjoy school for the rest of the summer with out any repeat stomach issues.
Lucas has been very alert lately, laughing alot and working very hard at physical therapy. His skin GVHD has improved and his scalp is also looking better. We hope to get him in the hot tub soon.
Mom took Lucas to his dentist appointment on Tuesday. Although he is very late losing his 1st teeth (he's only lost 8 teeth so far)the dentist said the x-rays show that the new teeth are close to coming in. He was excellent at listening to the hygienist and opening his mouth for the cleaning. The funny thing is when mom or dad want to brush his teeth at home, he clamps down and won't let us in with the brush.
We hope everything goes well on Saturday with the walk and hope Lucas can have a nice day and do well. God Bless!
Wednesday, July 13, 2005 10:34 PM CDT
MLD WALK ON JULY 23 OCEAN COUNTY PARK BY STENNIS FOUNDATION/TOMAINO CHILDREN TO RAISE FUNDS FOR MYELIN RESEARCH. IF YOU'D LIKE TO PARTICIPATE, PLEASE CONTACT US AT 741-3181 FOR A SPONSOR/PLEDGE FORM AND VISIT STENNISFOUNDATION.ORG FOR REGISTRATION INSTRUCTIONS. IF YOU WOULD LIKE TO SPONSOR LUCAS AND OUR FAMILY IN THE WALK, WE WOULD GREATLY APPRECIATE ANY DONATION YOU CAN MAKE TO HELP WITH RESEARCH AND THE CHECKS CAN BE WRITTEN OUT TO "STENNIS FOUNDTION" AND MAILED TO OUR ADDRESS BELOW. CHECK IN IS AT 8:30 AM AT OCEAN COUNTY PARK ABOUT 1 MILE FROM EXIT 91 ON THE PARKWAY AND THE WALK STARTS AT 9:30. THANK YOU.
Thank you for taking the time to check in on Lucas.
Lucas has been dealing with diarrhea for the last 3 weeks. He tested negative for C-Diff, so Dr. Teitlebaum is now concerned as to why he is still having diarrhea. Lucas will go into Monmouth Medical Center Monday morning to have an endoscopy and a colonoscopy performed. He will be under a light sedation, and hopefully be home by early afternoon. We hope to find our answers from this. Dr. Bunin at CHOP is in agreement with the tests to be done. They do not want to put Lucas back on the Diflucan (Fungal med) until the tests are done. We're thinking it could be something fungal, but we must wait. One positive note is that Lucas's awful build up on his tongue has just about gone away and it appears the Chorhexidine worked and Mom scrubing his tongue twice a day.
We have been keeping him home from school because of the diarrhea and that some days he could have 6-7 BM's. In any event, we have been doing lots of PT and OT. He is moving his left arm and hand more and more each day, and will grab things and give high fives. He also loves to play t-ball while sitting on his bench and also kick a soccer ball. He seems to get enjoyment out of these activities as he loved both sports before he got sick. It is difficult going outside with this sticky humidity and heat hanging around. We enjoy doing things in the house and watching movies as a family.
We are hoping the weather cooperates for the MLD walk on the 23rd and that many people help support the research that is going on. On a lighter note, many of you know how much Lucas hates watching commercials or anything non-cartoon, but it's hilarious when we try to put on the Weather Channel in his room to see the Dopler, he doesn't hesitate to scream at us to change the channel. He will have moments of zoning out, but we must admit that they are not as often these days. He still has spasm attacks at night and we rely on the valium and ativan to calm him down. He is alert, laughs a lot and can't get enough of Abby. She's very supportive and protective of Lucas and we can only hope that this very humbling experience for her will shape her into being a caring, giving person to others. We hope to see you on the 23rd. Please keep our friends and their children in your prayers. God Bless!
Sunday, June 26, 2005 9:13 PM CDT
ANOTHER QUICK UPDATE ON THE MLD WALK: CHECK IN AT 8:30 AM AT OCEAN COUNTY PARK AND THE WALK STARTS AT 9:30 AM. REFRESHMENTS WILL BE SERVED AND BUSTER THE MASCOT FROM THE LAKEWOOD BLUE CLAWS BASEBALL TEAM WILL BE THERE. PLEASE CALL US IF ANY QUESTIONS.
***UPDATE TO QUESTIONS: TO SPONSOR LUCAS AND OUR FAMILY IN THE MLD WALK, PLEASE SEND THE CHECK TO OUR ADDRESS SHOWN BELOW AND WRITE IT OUT TO "THE STENNIS FOUNDATION" WHICH WOULD MAKE IT TAX DEDUCTIBLE. THANK YOU FOR INQUIRING AND YOUR SUPPORT.***
MLD WALK ON JULY 23 AT OCEAN COUNTY PARK BY STENNIS FOUNDATION/TOMAINO CHILDREN. CONTACT OUR EMAIL OR STENNISFOUNDATION.ORG FOR REGISTRATION. PLEASE TRY TO COME OUT AND HELP OUR KIDS! FOR MORE INFORMATION ON WHERE THE MONEY BEING RAISED IS GOING, PLEASE VISIT MYELIN.ORG AND LEARN ABOUT "THE MYELIN PROJECT."
Thank you for checking in on Lucas.
The shampoos and head lathers are working for Lucas. His scalp is doing very well. His skin has developed a few areas of redness and dryness, but overall it is looking pretty good. As we said in our last update, Lucas has been very alert and doing pretty good. We were able to get out a few times last weekend and he did very well for those few hours. Lucas's hot tub was finished on Friday and running on Saturday. We have to thank Mr. DeFalco from DeFalco Pool and Spa for moving the tub in and setting it up for Lucas and again Mr. Glassmacher for building the closets in the garage to protect things from the splashing water. Unfortunately, we were unable to take Lucas in for therapy as he is dealing with diarrhea right now. We have to monitor it and possibly get some labs done if it persists and we hope the C-Diff is not coming back.
Lucas had a good visit at CHOP on Tuesday. The big thing that caught Ginny's and Dr. Bunin's eye was Lucas's gruesome tongue. It has been that way for the a while, but they thought it was awful and gave him a script for Chorhexidine which we must brush on his tongue twice a day. He doesn't enjoy having his teeth brushed, let alone going in there with a toothette to scrub his tongue. So far it's cleared up a little. His labs came back fine, but he remains on Magnesium. They decided not to change anything and keep everything the same until his next labs in 3 weeks for his next IV infusion at Monmouth Medical Center. His IV infusion at CHOP took a while. They had trouble finding a good vein, but eventually after a few extra hours they got one in and it went well. It's times like that we wish his port was still in, but he doesn't seem to mind being stuck with the needle. It's the only time we can honestly say that he doesn't watch the cartoons and watches the nurse putting the needle in.
Lucas finished school this past Monday and will be off until July 5, when his summer program commences. We have been doing therapies at home with him and the PT's have been able to get him to do new exercises, especially with both arms. We are forcing him more and more to try and voluntarily move his left arm. He works hard and still will cry through some of the sessions. With the heat and humidity here, it's difficult on his skin, etc. in trying to go outside. We'll stay put until a little relief comes. Abby finished school last Thursday and we plan to keep her busy as best as we can.
The above picture was taken at the pancake breakfast at Gethsemane Lutheran Church in Keyport. They are very supportive of Lucas and our family and enjoyed having Lucas come to visit. Thanks again for your help. Also, we'd like to thank Dr. Rogers and his wife Vicki for watching Lucas last Saturday night. Dr. Rogers is an OB/GYN in Ocean Twp. and 3 months ago gave us 2 nights in June that he was not on call and wanted to watch Lucas and Abby. It was our first night out for supper since November of last year and with Abby's help with the meds and feedings it went well. They enjoyed the experience and Lucas's affection and laughter, and said they will give us additional days to plan to go out in the future. We believe when people spend some time with Lucas, learn his daily grind and struggles, and feel his affection and laughter, that they get so much out of it. We have to believe that this is something positive from Lucas's fighting this disease. Please pray for our friends and their children and please try to help our kids by either attending the walk in July or sponsoring Lucas. Thank you and God Bless!
Friday, June 10, 2005 7:36 AM CDT
MLD WALK ON JULY 23 AT OCEAN COUNTY PARK BY STENNIS FOUNDATION/TOMAINO CHILDREN. PLEASE CONTACT OUR EMAIL OR STENNISFOUNDATION.ORG FOR REGISTRATION. PLEASE TRY TO COME OUT AND HELP OUR KIDS!
Thank you for checking in on Lucas!
We apologize for taking almost 3 weeks to update. Lucas has been doing good recently. His skin has cleared up very well. He had a Dermotologist appt. last week and Dr. Grossman gave us some shampoos and gel for Lucas's head. After 2 showers, the dryness on his scalp cleared up. He told us to wash his hair each morning for a month and apply a special gel as needed. Last week was Lucas's first visit to the Monmouth Medical Center Day Room for his IV Antibiotics. The first appt. took a while, but Dr. Fisher and the nurses were very friendly. He was the only person there and it went very well. Afterwards, the ride home took 15 minutes. He has been tolerating his feedings and has only had a few bouts of spasms/restlessness whereby we had to give him the usual meds to settle him down.
He's more alert and laughing. He's only missed 2 days of school in the last 3 weeks. The 4 hours we have him at school, he receives no feedings and meds. When we pick him up and get him home, he's due for his feeding and meds, so the timing works out very well for him.
His next visit to CHOP is on June 21 and he'll receive his next round of Antibiotics after his check up that day. Lucas finishes school on the 20th and goes back for the summer program in July. Abby is finishing school on the 23rd and doing OK. We hope to get out and do a few things when the kids are home. Our summer plans are to stay home and do the usual things nearby. The heat is a bit much for Lucas to be outside and we try to avoid the sun.
We'd like to thank all of our friends at Gethsemane Lutheran Church in Keyport for their dedication to helping Lucas. Last Saturday they held their 3rd pancake breakfast fundraiser for Lucas. It was a great morning for all of us and we took Lucas back to his old "time out room" in the preschool section of the church that he loved to visit when he was 4. We ask for your thoughts and prayers for the families and children who struggle each day with these illnesses. God Bless!
Saturday, May 21, 2005 9:45 AM CDT
Thank you for checking in on Lucas!
MLD WALK ON JULY 23 AT OCEAN COUNTY PARK BY STENNIS FOUNDATION/TOMAINO CHILDREN. PLEASE EMAIL US OR CONTACT STENNISFOUNDATION.ORG FOR REGISTRATION DETAILS. PLEASE TRY TO PUT THE DAY ASIDE WITH YOUR FAMILY AND COME OUT TO SUPPORT OUR KIDS.
It's been a few weeks since our last update, but overall Lucas has had a few good weeks. We've had him in school for about 3 hours a day except for his hospital visit and Friday's crummy weather. His visit to CHOP a few weeks ago went well. Dr. Bunin was concerned with his rashes from the GVHD and especially with the pictures we brought to show her. She got to see how much his skin has cleared up and then she decided not to lower the prograf at this time. They are trying to work out the details with the Oncology Department at Monmouth Medical Center for Lucas to go in every 3 weeks for his antibiotic IV infusion. He received his antibiotic IV at CHOP and interestingly the nurse told us that she has seen a few kids have reactions to the same antibiotic (Dapsone) that Lucas couldn't handle. So we're a bit pleased that we're taking this route with the IV at our local hospital for Lucas and hope it goes well for him.
He has been sleeping through most of the nights and on occassion his skin will flare up, but overall it looks better. We scheduled his next Botox procedure for August 16 again with Dr. Armento in Newark. Moving Lucas's hot tub into the garage is almost complete. Thank you to Hugh Doherty, Tom Caruso and Clyde Snyder for you help. Also, once a gain, Phil Shaheen at Builders General Supply in town donated the materials. The doors and window were donated last year by Black Millwork in Allendale, NJ with the help of Andy Balto from town. We held Lucas's 11th birthday party on the 14th and he had an entertaining day with everyone here. We took him on the 13th to the local Japanese Hibachi restaurant and they were very entertaining to him and Abby. You never get used to eating in front of him, especially when he sees shrimp. But overall, we'll take these good days as they come, because experience has taught us that things can change real fast. Please pray for the kids and their families, especially at this time Cory, Maddie and Anthony. Godspeed!
Saturday, May 7, 2005 7:45 PM CDT
HAPPY BIRTHDAY TO LUCAS - HE TURNS 11 ON FRIDAY, MAY 13. AN EXTREMELY SPECIAL DAY FOR LUCAS AND OUR FAMILY!
Also, thank you for checking in on Lucas!
Since our last update, we've seen gradual improvement in Lucas's flexibility and skin. It looks like the Botox/Alcohol Blocks is kicking in better this time around. For 8 days until last Thursday, Lucas's regular wheelchair was in for adjusting and he had to use his old stroller. He's not very comfortable in his stroller as van rides close to 30-40 minutes are difficult for him, so we called CHOP and canceled his Tuesday appointment until this Tuesday. His wheelchair was finished Thursday and he was fitted in it at school. He sits much better and upright in his chair. We had him in school 3 times last week and even played a little hooky to take him to Pt. Pleasant for a little stroll on the boardwalk when the weather warmed up. He didn't seem to mind the bumpy ride and he enjoyed that brief respite outdoors.
Overall, he has been sleeping through the nights and waking up at 6:30, this means we have also been sleeping through the nights for the first time in a while. His last test for C-Diff came back negative and the diarrhea has stopped. For the most part his bowel movements are normal and he's urinating more regularly too. We had several conversations with CHOP this past week about how Lucas has been struggling ever since he was put on daily antibiotics. The fact that we feel most of Lucas's problems are probably related to the antibiotic Dapsone destroying his stomach, doesn't change their advice that they believe Lucas must remain on it to prevent against the deadlier strains of pneumonia. If we don't want to give him the Dapsone, they said they wouldn't feel comfortable caring for Lucas if they knew they weren't doing everything possible with his compromised immuned system. We then discussed our options with the nurse practitioners and decided that the best course we can take is to have another antibiotic given by IV every 3 weeks to Lucas either at CHOP or preferably nearby at Monmouth Medical Center. It is not as effective as the Bactrim or Dapsone (both of which Lucas is allergic to), but CHOP is willing to try this for a while. They may want to switch back to the Dapsone at some time in the future. It had been a brutal winter for Lucas and we knew we couldn't continue on the same path. With his skin clearing up and the C-diff subsiding, he's laughing and is more alert. They say he's been enjoying school and can see a difference in his personality this past week.
We still try to give him a shower every few days, however, he cries through each one. He doens't seem to like the water hitting his skin and we hope all of the work we're doing to move his hot tub in the garage is worth it. Abby is wrapping up her last night in Walt Disney, Orlando and has had a great week. She is coming home tomorrow afternoon and will be home in time for supper with Mom. We missed her this past week, but we can really admit with Lucas doing better, Abby away having fun and tax season mostly over, we actually got some rest and sleep for the first time in over 2 1/2 years. That's not to say we're fully rested, but it has helped give us a little boost.
We'd like to ask for your thoughts and prayers for our friends the Trimpers and the Tomainos for their children, especially Maddie Trimper and Anthony Tomaino, who are having a tough time right now. We try to follow our friends websites as often as we can and want them to know that we care for them and think of them often. Also, the Stennis Foundation walk in Lubbock, TX in honor of Lucas's hero Nathan Fleming for MLD was a success and they are planning a walk in June somewhere here in New Jersey. May God Bless all of the families and children struggling to cope with these terrible diseases. Godspeed!
Tuesday, April 26, 2005 8:42 AM CDT
Thank you for checking in on Lucas!
Since last update, Lucas has had his ups and downs. Although his skin has improved in some areas, it is still very blotchy all over and dry in some areas. Yesterday, Lucas had a follow up appointment with Dr. Grossman (Dermatologist) and after 2 weeks of creams, etc., he was happy with the improvement, but he now believes Lucas may be having an allergic reaction to one of his medications and did a skin biopsy on one of the areas. The results will be back Thursday, but for right now his hunch is that the cause may be one of the antibiotics. In all of his years of practice, he's seen one other case of GVHD, however, the doctor is very thorough and persistent. He's researched MLD since our friend Dr. Wurmser contacted him for us and sees some connection with a skin disorder associated with MLD called Ichthyisiform (or as we told Lucas he now has a skin thing called Itchy-gitchy-goomy-Gus). He prescribed a stonger cream and we follow up in 2 weeks.
Last Tuesday, Lucas had his Botox/alcohol block injections with Dr. Armento in Newark. Except for the parking, the hospital and staff were very nice and Lucas did very well. He was under for about an one hour and woke up relatively quickly with very little pain, however, he was up all night with gagging and reflux as the anesthesia was still wearing off. He is showing some improvement already and PT has started up again. He is scheduled for his next injection in about 4 months. Lucas has his 4 week appointment at CHOP next Tuesday. His diarrhea has improved and we're taking him to get another sample tested this week.
We took Lucas to school twice last week for about 2 hours and he did OK. Last Friday, Mom took his chair in for adjustment and for some reason he doesn't like the old stroller chair we have to now use. We took him to school yesterday and he cried and was very uneasy on the way in and by the time we got back home, they had called to tell us he was still crying and out of sorts. We drove right back and got him home where once in bed with cartoons, he settled down. He hasn't been very comfortable getting out of the house and we're hoping when his chair is done, he'll be more relaxed and comfortable and able to get out, so we're keeping him home from school until it's done.
The contractor came last week to put in the sliding doors and renovate the garage for us to move his hot tub inside. They're all done and now we're waiting for the pool men to come and move it in. The new door off the deck gives us the extra 6 inches we need to get him outside and plus we hopefully don't need to put plastic up anymore to prevent leaks. Dr. Grossman had some concern about the hot tub and bacteria, but we told him it's something we can do at home together that Lucas likes and that we don't keep the temperature much over 90. Lucas went in it about a dozen times last year with no problems, so we're still willing to take the chance. Aside from TV (which he really enjoys and we all watch together - thanks to Make a Wish), this is the only thing he enjoys as he appears to be giving us messages the last few times that he doesn't like getting out and would rather stay home, so we're going to accomodate him no matter what. Abby is packing and getting ready to leave for Walt Disney on Friday and she's excited to say the least. God Bless!
Friday, April 15, 2005 10:45 AM CDT
Thank you for checking in on Lucas!
Our last update indicated that Lucas's severe rashes and flakiness seemed to have cleared up as we increased his Prograf, but it came back soon after and his entire body was red and flaky. We had some concern as Lucas skin was again getting worse. The diarrhea persisted and he was itching and scratching and very uncomfortable and restless. He was grunting, moaning and crying over and over. He was not sleeping through any of the nights and Mom has slept in his room for the last 2 weeks. His nose was dry and irritated. We called our family friend Dr. Wurmser, a wound care specialist and he stopped over ASAP. It was very difficult to tell, but he recommended at least getting rid of Lucas's egg crate mattress, which harbors bacteria. He's looking into getting Lucas a special bed used for burn victims. He also recommended Lucas see a Dermatologist and recommended Dr. Grossman here in Little Silver. Dr. Wurmser contacted him and he took Lucas in right away. He examined Lucas thoroughly and said it looked like Dermatitis and GVHD. He rocommended 3 different steroid creams to use for 10 days and to see how he does. If it doesn't get better, his thoughts are that it could be a reaction to a medication. He still has C-Diff as one of his specimens came back positive.
Over the last few days, Lucas's skin is looking a little better and his diarrhea has decreased. He has been less irritable and actually smiling again. A big difference since last week. Overall, the last few weeks have been very difficult for Lucas, but the last few days have gotten a bit better. We'd like to think he sensed Dad was finishing tax season and that now things would hopefully be calmer and quieter. Obviously, Lucas hasn't been capable of going to school. This Tuesday, he has another Botox injection procedure with Dr. Armento at B'nai Israel in Newark, NJ. We'll see how he does after that and try to get him back to school gradually.
On a lighter note, Abby is getting ready for her trip to Walt Disney with her Aunt and Uncle. Also, over the last few weeks, so many people have helped out with cooking, taking Abby for playdates and as usual, Grandma has been coming to lend a hand with laundry and cleaning, especially during this busy season for us. With many of the home chores, along with the busy work days and Lucas's being awake 24 hours, nothing gets done and we appreciate all of the help. No matter how tough the days could be, we feel very fortunate that we're still receiving help and support. There is no way we could go about this alone and it helps when people lend a hand in any capacity. During tax season, Grandma and Grandpa took over going with Mom and Lucas to the hospital visits and now Dad will be able to go. All thanks to many of Dad's clients who in addition to paying, also made a donation for Lucas's expenses. Thank you also goes out to Dad's cousin Bernie in PA who is constantly sending financial help for Lucas. Godspeed!
Tuesday, April 5, 2005 8:58 AM CDT
Thank you for checking in on Lucas!
Mom and Dad are very busy with tax season coming to an end and with Lucas and Abby. The days are still long and not easy for Lucas. His diarrhea is continuous and he's been up each night 4-6 times. By upping the Prograff his skin cleared up nicely and his itching has not been so persistent. Moving him has been difficult at times with his stiffness and tightness. Bending his body to sit up on the side of bed or in his chair can be very painful for him. We have had to catheterize him several times over this past week to help him urinate. Some of the meds cause this and some cause that, meaning what may make one area of Lucas's problems do better will cause some other problem. His last C-Diff sample came back negative and we have to still do two more tests, but the diarrhea is still with him. If the other two tests come back negative, we will have to figure out what's causing the diarrhea. Overall, he's had a few good moments and has been his calmest during Pokemon and Digimon videos. The gagging and retching is a daily constant. CHOP has said the antibiotics will be in Lucas's daily medicine regiment for ever, but we're fairly certain that their side effects are recking his stomach. Without them, it could be very tough for him at this time or anytime for that matter to fight off infections due to his cronic GVHD.
On a lighter note, the Plasma TV is arriving Wednesday and the men are coming to install it. We have to thank the Make-a-Wish foundation for not forgetting Lucas and always checking in on him since Septebmer, 2002. Abby starts softball and has been doing well in school. She enjoys playing with and being an older friend to the younger kids in our neighborhood, especially with the warmer weather coming. She leaves for Disney in 3 weeks and we cannot explain how much she means to Lucas and how much she deserves this trip after the last 3 years. We are reminded over the last 4 days of the tremendous life and inspiration one man in Italy has had on so many people these past 25 years and especially on us. His teachings of giving, caring for others and keeping life simple have reminded us that you must be strong and overcome any hurdles put in front of you. You must be faithful and persistent. God Bless!
Friday, March 25, 2005 9:11 PM CST
Thank you for checking in on Lucas and we wish everyone a Happy Easter and Passover!
Lucas came home late Thursday afternoon. Mom was given the choice to have Lucas stay another day at CHOP, but felt he'd be better off home. Nothing really changed too much for Lucas in hospital, but we got them to see how severe his skin looked and Dr. Bunin agreed to up his Prograff which we think will help the GVHD and his skin irritability. We know it's step backwards, but we have no choice. We know we have to keep trying to wean him off certain meds, but sometimes it doesn't work. While in hospital, Lucas's IV came out several times and his diarrhea persisted. It could take several days for the C-Diff infection to exit his system. He didn't sleep through any of the nights. But, he's home and Mom has given him some Clonidine which has really calmed him down this time. He's hasn't even moan or grunted when the commercials come on and he's basically very quiet and zoning out and not smiling at anything. We don't generally like him so quiet and subdued while on the Clonidine, but he needs some rest and calmness right now. (So do we.) His spasms have also calmed down for now. We continue to use the suction machine for his occassional gagging and he's now used to having his mouth and nose cleaned out. For us, we may be tired, but a moment never goes by where we don't have the energy or will power to be with him, take care of him and show him how much we love him. As we say, we don't care what happened yesterday, we surely don't worry about tomorrow, but today is all that matters! Godspeed!
Tuesday, March 22, 2005 6:57 PM CST
We just updated the other day, but have to add at this time that Lucas was admited to CHOP this afternoon. He could not be settled down with anything we gave him and his diarrhea was getting worse. He wasn't keeping his feedings down and vomited this afternoon (he's not really suppose to vomit after his fundalplycation 2 years ago). We called CHOP and Mom, Grandma and Grandpa drove over to Philly. They admitted him and started an IV. We couldn't figure out why his shirt was drenched on his back and then realized his back incisions from the summer dorsal rhysotemy surgery, which appeared to have healed were oozing again and swallen. They were leaking somehow and probably causing him severe discomfort. Mom had been going through jars of vasoline and other special oitments for his severely flaky skin from the GVHD and he was so greasy, that we couldn't tape shut his diaper. We know the C-Diff bacteria has contributed to this, but overall Lucas has not been sleeping and he's looking very pekid and pale. He's now getting set up in the room at CHOP and they want to keep him for atleast one night and play it day to day for now. Godspeed!
Monday, March 21, 2005 8:09 AM CST
Thank you for checking in on Lucas!
Lucas has had a rough time lately. Firstly, his diarrhea was getting worse, so Dr. Tietlebaum decided to test him for C-Diff. which is bacteria in the intestines. It came back positive, so now Lucas is on another antibiotic for 10 days. We are hoping it starts to kick in soon and help make Lucas more comfortable. So, he will be out of school for a while, but hope that after the Spring break he will be able to go back again. Also, his GVHD has flared up very badly, to the point that his skin is flaking and red. It doesn't matter how much cream or oil we put on his skin, it still doesn't get better, so Mom is calling CHOP today to see what we can do. We are also going to see if we can put Lucas on some kind of sleeping aid, as he can not settle at night to get to sleep. It takes us hours to get him to sleep even after giving him Ativan and Valium. Lucas is also congested, either a cold or the weather, but because of his high blood pressure, we can not give him any cold medicines, so Mom is suctioning him as much as he will tolerate and using saline drops.
On a good note, his lab results from Tuesdays visit to CHOP were good. The only concern was his GVHD and we were told that if we can't maintain his skin with the Protipic we might have to go up on his Prograf again.
Dad is working hard with tax season winding down and we are waiting for the nice weather to kick in. It's been a long winter and we are thinking positive about getting out for 1 day trips with Lucas. On Lucas's next visit to CHOP, we're planning to stay at the McDonald House (CHOP has told us to contact them) in Philly and taking Lucas over to the Zoo. We have to stay close enough to home where if we had to, the ride home is within a few hours. We will also keep you posted on some up coming Walk-a-thons supporting MLD being sponsored by the Stennis Foundation. We had mentioned one of the walks for our dear friend Nathan Fleming in Texas and another is scheduled in Boston on June 12. There is some talk about organizing one here in New Jersey and we'll keep on top of it. God Bless!
Tuesday, March 8, 2005 7:48 PM CST
Thank you for taking the time to check in on Lucas!
Lucas has had his last 2 visits to CHOP canceled due to the snow. Last Tuesday and today. Mom still communicated each time with our nurse practitioners to discuss Lucas's meds and feedings. They took Lucas off his fungal med Dyflucan, which he has been on since Dec, 2002. We were grateful to see March 1 come as it marked the 1st month since October that we didn't have to take Lucas to the ER.
Since last update, Lucas has had the same concerns. He only slept through one night and most nights he woke up 2-3 times. He's had bouts of diarrhea and spiked a few low grade fevers during that time, but we got things under control. The spasms and restlessness have continued each day and we're constantly giving him Valium and Adovan, but sometimes they don't work for him and he just struggles through it. He's gone to school several times and we've kept him home a few times if he he's had long nights and doesn't wake up. We've informed the school district that we want to discontinue the busing for Lucas at this time. For the longest time, we gave him a bowl-less feedings which took 5-7 minutes, but his gastro systems just can't take that speed anymore and we're back to using the pump, which takes longer. In the morning we have to give him his Prograff (immune suppresant) and wait 30 minutes for either more meds or feedings and by the time the feedings are done his van for school would be sitting outside for 45 minutes. So we're driving him back and forth to school each day he's able to go, plus we also avoid if someone is sick in the school van, he won't be compromised in such a tight area.
The last few days we've seen his GVHD flare up considerably. Mom has been constanting putting the creams and oitments on him, but his bottom and back and hips have significant rashes. We rescheduled today's visit to tomorrow and hopefully the weather cooperates. They are very good to us at CHOP about making appointments in inclement weather. They don't expect us to show up if the weather isn't cooperating and the 90 mile one way trip is too dangerous if the conditions are bad.
On a good note, after 2 1/2 years of our friends at the Make a Wish contact us, we came up with an idea. They want to do something for Lucas and agree with us that his condition is too much to deal with on a vacation and he probably wouldn't like it anyway. The TV with cartoons and DVD's is about the only thing Lucas enjoys, the 20 inch TV in his room is the best we can fit, but without his glasses we don't know how much he really sees. They suggested getting him a Plasma TV. They told us to go Circuit City and pick one out. So Mom and Grandpa have been checking them out and we hope to have one for him soon. We want Lucas to be comfortable and be happy enjoying about the only thing he can look forward to each day, so we want him to enjoy it in style.
As far us, we don't expect to sleep through the nights too much and rely on each other to care for him each day. Dad is staying ahead with his work this busy season and taking it one day at time. We are looking forward to the warmer weather after April 15, sitting outside watching Abby the kids in the neighborhood play and hopefully moving the hottub into the garage for Lucas to receive some relaxing therapy. Lucas's Uncle Frank made us a folding extension to the garage ramp and it has made Lucas's journey in and out of the house much easier. Also, many of our family and friends in the community continue to help around the house and drop off food. In the past few weeks about a dozen people have helped us in some way and we are humbly thankfull for their generosity. Godspeed!
Friday, February 25, 2005 8:28 PM CST
Thank you for checking in on Lucas!
Since last update, we have taken Lucas in for blood work 2 times and overall his counts are looking good. He is still on the magnesium and potassium at this time, but the amounts have decreased. We have switched his formula to a gentler one as he was still gagging and retching mostly at night and sometimes during the day. Mom has been in touch with Dr. Teitlebaum and the dietician at CHOP in trying to find the right combination for Lucas. In the last 2 weeks, Lucas has only slept through the night once and the other nights he woke anywhere from 3-5 times. It isn't helping the situation that Lucas has had reflux since the day he was born. Hearing him struggle through the night and waking up moaning and choking has become somewhat normal. We expect it when he falls asleep and we've stopped sleeping in his room.
One of the topics Mom discussed the last meeting with Dr. Armento was about trying Neurotin, but he advised her to wait until the appointment with Dr. Barabas the neurologist. Mom and Lucas met with Dr. Barabas on Wednesday. He diagnosed Lucas with MLD and was very surprised to see how alert Lucas was compared to when he saw him 8 months ago. He did not think putting Lucas on Neurotin was an option at this time. He had concerns about the side effects and agreed with Dr. Armento that we have to consider a 3rd attempt with the Baclofen pump down the road. They both said that the smaller pump might be better this time around for Lucas, but we have to atleast wait for his GVHD to disappear. The other 2 pumps Lucas had in and out were the size of a hockey puck and bulged out of his tummy. For right now, we just have to keep trying our best to keep him comfortable and search for the right combination of type and amounts of formula and Prevacid to kick in.
Overall, we must admit that he has been much happier the last few weeks and laughing at Abby, jokes and cartoons. There are times nothing can settle him down, but the majority of the time he has done pretty good. He enjoyed the few days we were able to get him into school. When he has a rough night, we keep him home. Please pray for our friends and children. Godspeed!
Sunday, February 13, 2005 10:04 PM CST
Thank you for checking in on Lucas! Happy Valentines Day!
Waiting almost 2 weeks to update leaves you to decide where to begin. But this time, we're going to start with the last few days. On Friday, Mom spoke to Dr. Teitlebaum, the GI doctor. We told him Lucas up to this point is not sleeping and just constantly gagging and retching even after upping his Pepcid dose to 60 mls a day. He told us to switch over to Prevacid, as now it comes in a time release dissolvable tablet, and let's see what happens. Lucas woke up once Friday night and all day Saturday he didn't retch or gag. He slept to 5:30 am Sunday morning and he had a good day today. He's smiling more, he's more alert and laughing at TV. This was mostly absent for the last few months. A big difference the last few days and we have to think positive that finally something is working for him. He still lets you know when a commercial is on and will grunt at that, but we haven't had to use his suction machine and the spasms have decreased significantly.
On Friday, Mom took him to school for a few hours, which was the first time in several weeks. He did well in school and everyone was happy to see him back. Mom met with Dr. Armento(Physiatrist) and they discussed the meds. He gave Mom a script for Neurontin, but advised us to possibly wait until we meet with Dr. Barabas (Neurologist) in 2 weeks and get his opinion. He has decided to do the Botox in April at his hospital in B'nai Israel in Newark, NJ as he is very familiar with Lucas's case. We've decided to no longer do serial casting on his feet (possibly do tendon release in the future instead). We will instead, do serial casting on his left elbow/arm, so that he will have use of both arms for OT.
On Tuesday, we met with BMT nurses at CHOP for Lucas's 4 week visit. His rashes/GVHD are all but gone and his skin is looking better. They had us come down a little on his Prednilisone and Prograf and see how he does the next 4 weeks. He is still on Magnesium and Potassium as his levels are still not where they want them to be. They also added Calcium supplements and Dapsone (antibiotic) and dropped Bactrum(antibiotic)and Duolcal(calorie booster). Lucas has some constructive appointments this past week and hope he continues to feel better and be happy. We are planning to drive him to school this week again as we want to keep him out of the close confines of the school van in case others are sick. At least in his classroom, it's bigger and they have told us they will give him some distance from others who may be sniffling. We're getting a little more sleep ourselves the last few days and we haven't had to sleep in his room.
We'd like to mention for your reference that Nathan's Mom, Rhonda (Nathan was Lucas's mentor and friend in Minnesota) is holding a walk-a-thon in Nathan's memory to benefit the Stennis Foundation which does research on MLD. Please see the visitor posting for the websites and how you can help us. We know many of friends from our stay in Minnesota and from Philly check in on Lucas and we think of you often. We continue to do the best we can for our kids and can only hope for things to get better them. Thank you again and please pray for our friends and their children. Godspeed!
Wednesday, February 2, 2005 7:17 PM CST
Thank you for checking in on Lucas!
We have had Lucas home from school this entire time. He's had some restless, sleepless nights as he's still not feeling that well. He is still taking the Magnesium and Potassium for his levels are still low and we have been taking him over to Monmouth MC for his lab work every 3-4 days. They fax it over to CHOP and someone calls Mom in the afternoon. He's had bouts of diarrhea and times of severe spasms, even after we started around the clock doses of Valium. Next week Lucas has a Tuesday visit to CHOP where we can hopefully reduce the Magnesium and Potassium even more. Also, we are hoping that we will be able lower his Prednilsone again as his skin is looking good. We go through lots of lotions and creams for his skin. His skin really soaks them up.
Also, Wednesday, Lucas has an appointment with our original Neurologist, Dr. Barabas. CHOP recommended staying local with the Neurologist. We will discuss if he feels that some of the spasms and restlessness Lucas has are seizures, and what medication he feels Lucas would benefit from. Then on Friday, Lucas has an appointment Dr. Armento where we will discuss putting him on additional medication to help with his tone. We are hoping that there will be one medication to correct both issues and have been told the Neurontin may be the drug. We've called Dr. Armento a few times these past weeks. We hope to take him to school next week for maybe a few hours a day and bring him home since both of the above appointments are clinic visits provided at school. We haven't wanted to put his leg splints on that much as we don't want to add to his discomfort. We are starting PT up again tomorrow, but we're going to go easy with it.
Last week, we took the kids to Lucas's favorite restaurant when he was able to eat, Shiki Japanese Steakhouse. The 1 or 2 times we all get a chance to go out, that's where we go. It's entertaining for Lucas and the chefs know him there. They seat us in a safe place and Abby also likes the food. Lucas did very well as it was one of the better moments for him these past few weeks. We dipped a shrimp in the sauces and placed it on his lips where he was enjoying it. He actually bit it off the fork and Dad had to go and in take it out of his mouth. (Lucastheshrimpeater) He hasn't been too with it the past week or so and he's been a bit subdued, probably due to the Valium. We just want him to be comfortable and not yelling and moaning in discomfort and pain. Godspeed!
Sunday, January 23, 2005 8:09 PM CST
Thank you for checking in on Lucas!
It's been a few long nights with Lucas. He's been very restless and his BM's are still on the diarrhea side. We now sleep in his room with Dad taking the weekend shift and Mom picking up tomorrow night. We've vented him and used the suction machine a few times each night as he started retching and gagging. Mom and Grandma took him Friday to Monmouth Med Center for his blood work, as Lab Corp 2 minutes from home couldn't do the blood work stat. Walking out of the hospital, he went by the gift shop and saw a stuffed lobster and made some noises. Grandma bought Larry the Lobster for him and it has led to some humor over these last few depressing Winter days. We have to take him again Monday for more lab work and hope to see some improvement with his magnesium and potassium levels. We don't feel he is anywhere near ready for school at this time.
For some reason, we have found this weekend a little difficult and maybe it was the blizzard and all its hype up until yesterday, but this is actually one of the first significant snows that Lucas wasn't in hospital since 2002. With Abby playing outside with neighbors and helping a few of them shovel their paths (she helped one who's ill and the other who was on call with the fire dept and first aid), we both were reminded that Lucas will never be able to play with his sister in snow. And with baseball signups on Saturday, it was strange to walk in and see everyone signing up their kids, but we were there only for Abby. We never gave that situation much thought the last few years. Lucas loved the snow and baseball. With his severe stiffness and rigidity, we couldn't attempt to take him outside in the cold/snow. With his struggles each day, this time of year really limits you. Dad is starting to get busy and we have to hang in there over the next few months. We have dug ourselves out of the snow and always keep the property clean and dry for clients and the possibility of having to get Lucas to the ER.
We also took Dad's sister up on her offer to take Abby to Walt Disney World. We want her to have some experiences, but we don't feel we can plan anything for Lucas. For the last 2 1/2 years, Make a Wish has been writing us and keeping in touch, but we don't see how we could even plan anything for Lucas with all of the medical concerns he has. So, Abby will be going with her aunt and uncle and cousin in late April. Nobody knows Disney better than the Dolsay's, especially that Alicia worked there for a while. So it is exciting to give Abby the opportunity and she was very excited too.
Very rarely do we look to some things in future, but our game plan is still the same: We're grateful for getting through the day at hand with Lucas and look to tomorrow with its expected challenges. Please pray and remember the children and their families who also like us just try to get through a day and do the best that we can under these circumstances. God Bless you!
Wednesday, January 19, 2005 4:54 PM CST
Thank you for checking in!
We just got home a little while ago with Lucas. He's been at CHOP (Philly) since Saturday night. They believe he still has a severe stomach flu. His Electrolyte/Potassium and Magnesium levels were very low so they kept him and wanted to give him those through his IV. He still has a severe diarrhea and has been discharged with Magnesium and Potasium medication going through his G-Tube. We are hoping this will keep his levels up and he will not have to be admitted for another round of IV treatment. All of his tests have come back negative, but they want to rule out by process of elimination any GVH in his stomach. We have to go Friday and Monday to Labcorp down the street in Little Silver to test his levels. He is still very uncomfortable and restless, but we're hoping he does better now that he's home. We have to be very careful with even a routine bug as it affects him much worse with the transplant and lower immune system. The doctors and nurses did confirm that when he is well enough, he can go back to school and although he is compromised, he is strong enough to get out in public and attend school. We're glad we beat the snow home. Godspeed!
Saturday, January 15, 2005 11:29 PM CST
Thank you for checking in on Lucas.
This will be a fast update until we learn more. Lucas was running a low grade fever since Thursday night. We were up with him both Thursday and Friday night. He was warm and extremely restless. The Atavin wasn't working that well. The last time he was this restless was when he had the shingles after coming back from Minnesota in February, 2003. His temp was 102.9 this morning and he was aspirating and gagging. We were constantly venting him and suctioning his nose and mouth. We called CHOP and they told us to get to Monmouth Medical Center ER immediately. We arrived at 10 this morning. (It's the 3rd straight month at their ER.)
They immediately got him a room once again. We waited a while, but the staff was once again extremely good to Lucas. They know he is a completed case and after running some tests, nothing conclusive was arrived at. His white blood count was 22, where on his clinic visit to Philly on Monday it was 12.5. They called CHOP and it was jointly decided to get Lucas their immediately. The ambulance picked him up at 8:30 tonight and Mom and Lucas are now in Philly for more tests. When we vent his G-Tube, the stomach gases explode and this morning the pressure was so much, when we vented him it hit the ceiling. He has not been doing very well the last few days and just not feeling good. We hope to find out more over the next few days. Godspeed!
Wednesday, January 5, 2005 9:31 PM CST
Thanks for checking in on Lucas!
Happy New Year!
Last week, Lucas wasn't sleeping much at night and getting very restless and moaning constantly. We called CHOP Thursday morning and they said to get him to his local Pediatrician immediately. After Dr. Lipp looked at him, he wanted Lucas to get to the ER and have some X-Rays as he thought he had aspirated. All of the labs and X-Rays came back negative and they suspected a virus and gave Lucas a script for Zertek to loosen up his chest. He came home very tired.
On Tuesday, we took Lucas to Childrens Specialized in Mountainside for his final appointment to have his AFO's made. It was decided to stop the serial casting and go straight to fitting him for the AFO's. Ann Marie, the PT who has been making the casts told us that Lucas has gone from having a negative position with his feet to having a 30 degree bend with his left foot and a 35 degree with his right foot. He cried through the whole procedure even after a dose of Ativan, but they came out great. It is discomforting for him wearing them the last few days, but we must keep them on him as much as possible until his next Botox procedure. Then the serial casting starts over again. It is overall going slower than expected, but he is showing improvement with his feet and we have to just keep going with this in attempt to get him into a stander someday.
We kept Lucas home today from school as he woke up gagging and just exhausted. He didn't sleep very well last night and the whole AFO procedure probably drained him. He didn't really wake up until about 2:00 pm. When awake, he is constantly moaning and grunting all the time. He just doesn't appear to be comfortable and we let it go so long until we have to give him some Ativan. He can be quiet when a favorite video is in or a cartoon is on, but once it ends or a commercial comes on it starts up. We're going to keep him home Thursday as the weather doesn't look promising, but we'll see how he is doing on Friday. The plans for Saturday are for all of us to go over to West Windsor, NJ and watch his cousin Justin play his varsity basketball game. We'll give it a shot and bring his DVD player just in case. We had family over on Sunday for the holiday visit and he had a good day. Everyone said how much more aware he was than Thanksgiving when the Clonidine patch was first introduced.
We ask for your thoughts and prayers for our friends and their children who are battling along with Lucas each day and showing so much courage to all of us. And also we never forget our friends we've met in Minnesota and since then, whose children have passed on. We NEVER forget them and never will. God Bless!
Saturday, December 25, 2004 6:09 PM CST
Merry Christmas!
Thank you for all of the cards, phone calls, website postings and emails for Lucas and our family!
We spent Christmas Day home today and we opened up the kids gifts arount 8. As usual, Lucas was awake at 6 and watching cartoons until Abby got up. She was very excited and we helped Lucas open up his gifts. It appears Lucas's favorite present was "What's in Ned's Head" which came with a rat, rotten egg, Terantular, moldy cheese and his favorite fake vomit. He had a lot of fun with the game. This afternoon, Dad waited for all of church masses to finish and the crowds to go home and he took Lucas over to the church at 3. Unfortunately, all of the effort getting him ready, parking, and going to the church resulted in the finding all of the doors locked. Dad just never realized they even had locks on the doors.
Lucas had his normal Thursday visit to Childrens Specialized in Mountainside for his serial casting. Both legs are looking good and there has been no skin breakdown. They're gradually trying to get his feet up to a regular position so that we can put him in a "stander" to help his bones and cardiovascular system. Unfortunately, they have not been able to get his feet up far enough to accomplish this. He has 2 more weeks of casting then permanent AFO's for his legs will be made for him to use the next 3 months until his next Botox injections. At that time we will try more casting again. It's a slow, timely process and Lucas struggles through each one, but we have stay the course for his benefit.
On Monday, we took Lucas to CHOP in Philly, for his BMT checkup and to see Dr. Kim, the tone management doctor. His blood pressure was again very high (resulting from all of his medications) and we were told to raise his Norvasc dose. Otherwise, his counts and GVH (skin) looked good and nothing else was changed. We saw Dr. Kim and she advised that we could probably save some time and energy and see Dr. Armento at Childrens Specialized instead of driving 1.75 hours to see her. Mom called Dr. Armento and that looks like a plan going forward. Dr. Armento comes often to Lucas's school, plus it's only a 45 minute ride to visit him in Mountainside.
Lucas has not gotten through an entire day without some extreme restlessness or spasms. Each day we have given him Valium at some point (the nurses at school give him a dose each day to try and settle him) and most of the time we wait a few hours and have to give him some Atavin. Some days, even the Atavin doesn't help and he simply moans and grunts for hours. We spent a few nights in his bedroom trying to sooth him to sleep, but he still wakes up early. He now weighs 72 pounds and growing. He had 2 days last week where we were getting him ready for school he began retching and gagging. One morning he vomited up some phleghm and we were told after his Fundolplycation in March, 2003, he wouldn't vomit again. He has been a little nasaly too and that may have contributed to the mucus buildup. We waited a little bit and took him to school each of those days and he managed OK.
Last Saturday, all of us courtesy of Jason's Dreams for Kids took a ferry ride around Manhattan and the Statute of Liberty. Lucas managed the first 1/2, but was uncontrollable the 2nd 1/2 of the trip. Once we docked and got him in the van with a DVD, he settled down. Lucas also received a very generous Christmas gift from Mr. McGinnis from Jason's Dreams for Kids and we plan to buy a few quality bean bag chairs for school and home. Also, the fundraiser a few weeks ago by Abby's Brownie troop for Jasons raised $3,500 and Mr. McGinnis and the troop leaders presented Mom with some gift cards for us. Thank you again. Our local Little Silver Fire Department once again would not accept our check for our Christmas tree and wreath and we thank them again.
We spent Christmas Eve over with the Dengler family in town and Santa Claus came on the fire truck to the house bringing gifts for all of the kids. The kids from 3 families enjoyed seeing Santa and each of the children truly deserved that moment. We had a nice evening and Lucas did very well. Today, Mr. Caruso from the Ye Olde Pie Shoppe dropped off enough desserts and cookies to last us for the rest of the week off and Thank You.
Lucas is getting bigger and it's routine for him to struggle each day. His hair is about fully grown in. He's now 2 years post transplant and still battling. The reality we have come to accept is that no day will be easy for him. We take care of him each day with every ounce of energy and when we hear that grunting, moaning noise on the speaker before sunrise, we both know
it's time to do it all over again. We are very grateful for the support from family, friends and community and that keeps us going. We want to say hello to our friends and the children who are also fighting each day and we pray for you and think of you each and every day. We also on this day want to thank the men and women who defend our country and for those who have sacrificed to give us the opportunity live free. Godspeed!
Saturday, December 11, 2004 9:15 PM CST
Thank you for checking in on Lucas.
Since last update, we did away with giving Lucas the Clonidine Patch. We even cut it in half, but it was leaving a reddish rash on the inside of his arm and it was leaving him drowsy and unaware of his surroundings. We went back to dispensing it through his
G-tube and he has been more aware since the change. Unfortunately, he has now been having daily spasms and bouts of severe stiffness. Almost each day we have given him Ativan which simply puts him to sleep. On Thursday night, he slept for 13 hours straight. He stiffens up so much and gets so restless that he perspires perfusely and we may change him 2-3 times during those spells. He has been going to school every day possible except for last Thursday and Friday.
On Thursday, Lucas went to Childrens Specialized Hospital in Mountainside, NJ, where he had his first serial casting. Ann Marie, one the head physical therapists there did the casting. She remembered Lucas very well. As she was getting prepared, Mom asked her about the process and she replied that Lucas has nothing to lose by trying it. An assistant with her told Mom that many kids have gotten great results from this process, but she obviously didn't know Lucas's track record. Mom told her that nothing has really worked for Lucas and Ann Marie, remembering Lucas from his 4 week stay back in July, explained that Lucas has had a lot of bad luck and things don't work out for him like most kids. The Dorsal Rhyzotomy is a good example of that. We met several kids and families who swore by the surgery, but overall, it didn't work that well for Lucas. The first appointment was successful and we will take the casts off next Wednesday night for us to give him a shower. The new ones will go on the next day.
Mom has been in contact with CHOP in changing his meds and just general talk about how he is doing. It is comforting to talk to people who undertand your son's disease and the unknowns that go along with each case. We have been doing our best to keep Lucas entertained and busy. When his head starts going down and he doesn't look up, that's our sign to get him in bed. He doesn't really like laying in bed, so we keep him about 1/2 in his chair and the other 1/2 Dad will hold him and sit him up for a few hours. When he is sitting, sometimes he'll tense up and we have to reposition him again. Lucas now weighs 68.5 pounds. Up from 55 pounds back in May.
Mom and Abby had a nice weekend in NYC and Mom got to do a few things she hasn't had the chance for a few years. She enjoyed her time, but as with Dad when he went away back in October, deep down you don't want to be away from Lucas and Abby. We agree it's nice to get away, but you think about him the whole time and it sort of defeats the purpose. He can be having a bad day, and then something gets him laughing and perks him up, that's what we don't want to miss. We now know for certain that's it's better for both of us together to care for Lucas on a daily basis, than for one of us to do it alone. We have let Lucas's hair grow back in for the 1st time in 2 years and it's gotten a little of that strawberry color back. He fights and struggles each and every day. No day is easy for him. You can't help but watch in amazement as a parent how he struggles and yet manages to laugh at silly things. The first thing Abby put down on her Christmas/Chanukah list was to have Lucas be like the old Lucas. Godspeed!
Tuesday, November 30, 2004 8:13 PM CST
It's been over 2 years now since we have had Lucas's website going and we appreciate everyone who still checks in and sends notes and emails.
It was 2 years ago this week that Lucas was in Minnesota going through all of the tests and exams, pre-transplant. We had some idea what to expect, but it was totally different watching him go through everything, knowing the entire next week we would see Lucas going through 8 intense days of chemotherapy before finally receiving his donor stem cells. For Lucas, things began going steadily down hill 3 years ago, so he has endured through much suffering. Dr. Krivit felt Lucas was a candidate for the transplant, and although he was doing well with transplant, things quickly got worse as we saw Lucas stop eating, stop speaking and become practically paralyzed. The spasms, restlessness, etc., kept coming and although today they are not as severe, he is still struggling with them. Dr. Krivit said our goal was to maintain Lucas's cognitive abilities but that the transplant would not help him physically. Lucas can still laugh and he knows mostly what's going on. The other day as we rode past Red Lobster and Dunkin Donuts, he made his screeching noise telling us we just passed his old stomping grounds.
On Thanksgiving day, we traveled to spend the day in Nazareth, PA with family. The entire day he was not with it, no emotion and very tired. We tried to cheer him up. Mom had a hunch that the Clonidine patch was possibly too potent and she contacted CHOP the next day. They told her to take it off and cut a new one in half and put it back on the next day. We started to see Lucas come around, and get more alert. When he doesn't moan and get figity during commercials, we know he's out of it. Lucas went to school last Mon-Wed for half days and the first 2 days this week. He's managed each day pretty well, but we are now putting him down for a nap each day after school. We find that this makes a difference in his tone level and he is happier the rest of the night. We've cut back on the recommended amount of his feedings as the last few days he has had retching/gasping bouts. It's been months since we have had to vent him and we hope it subsides soon.
Next Thursday, Lucas goes to Childrens Specialized in Mountainside, NJ to start the serial casting of his feet. We are not sure if it will be successful, but we have to try. He'll be going up there 1 day a week for about 7 weeks. He goes tomorrow for a new fitting of his body jacket as the old one doesn't fit anymore. He has gained about 10 lbs since April. We've let his hair grow in as the GVHD so far is under control even at a lowered prednilsone dose. He has some problems having BM's again, but we feel this is due to the 3 new antibiotics that were added. We hope his system can get used to them. With the weather getting cooler, it's now getting harder to get Lucas outside. Mom hasn't had a break in a long time and this weekend her and Abby are going up to NYC for 2 days to be with Sam's brother. They hope to visit the American Girl store, visit Rockefeller Centre and eat out in Chinatown. For Dad, our friends here in Little Silver are always offering for him to have a few brews watching football, going to B'ball practice or games, when he can make it. We really appreciate everyone thinking of us and giving us the opportunities. There are days we must admit, that we don't have the mental energy to return calls, etc. We hope everyone understands that it may take days or even weeks to write back or call back.
God Bless our friends and their families who share our daily struggles. Godspeed!
Sunday, November 21, 2004 10:44 PM EST
Thank you for checking in on Lucas!
Lucas was discharged from CHOP early Friday afternoon. Dad and Abby drove over to pick up Mom and Lucas to go home. He left quietly and enjoyed watching DVD's for journey home.
Mom left with 3 more meds. Dr. Bunin said that Lucas will be on Penicillin for the rest of his life. They also switched his feedings to Nestle Nutren 1.0 from the old Resource. He gets extra feedings during the day with additional protein powder added in. Lucas is now on the following meds: FK/Prograf, Baclofen, Pepsid, Prednisone, Norvasc, Diflucan, Penicillin, Acyclovir, and Bactrim. He now wears on his arm a Clonidine patch. On Thursday, Dr. Kim from the Seashore House (Rehab wing of CHOP) came in unexpectedly to see Lucas and took him right in for Botox injections in his lower extremeties only. She told Mom how booked she is, but she said she'll take care of Lucas. Her mentor is Dr. Armento who is Lucas's Physiatrist at school and at Childrens Specialized Hosp. That connection probably helped getting her to see Lucas so fast. Mom was in there for the Botox treatment as Lucas was slightly sedated. She used a different prodedure than we had been told was used at Hackensack. She also, wants Lucas to try getting his feet Serial Casted and that it can be done at Childrens Specialized in Mountainside. Dr. Kim has no problem with us going there. It will start on December 1 and continue for 6-7 weeks. She feels it could work for Lucas and we must try. It may be tough for him, but except for the discomfort, there's nothing to lose. She has had a few cases similar to Lucas in the past and like all of the doctors we've dealt with so far, they're very motivated and aggressive.
Dr. Bunin advised us that she still wants to see Lucas every 4 weeks going forward. We misunderstood when they told us we wouldn't have to visit that often, but anyway, we're comfortable with that, as the ride is much less stressful than North Jersey. The nurse practitioners we deal with in the BMT are very nice and easy to communicate with. They have an interest in learning and most of all a caring attitude for children and their families dealing with Genetic/Metabolic Disorders like MLD. They are aware of difficulty for funding, awareness and assistance with these dreadful, less known diseases.
This has been a quiet weekend at home for all of us. Lucas had a PT with Jon on Saturday and Janice, his other PT dropped off supper for us yesterday. We are very grateful for the dedication and hard work Lucas's PT's exhibit. Lucas has been having fun listening and watching Abby entertain him, along with the cats. He is still restless and tight at times, but we're glad to be at home together. We are sending Lucas to school tomorrow for a half day and we don't want to push him. His incision for his port is healing well. We've done a few hours each day of OT related projects with him. He's awaken each day at 6 and has taken a nap each day for 1-2 hours, before retiring at 8. He hated his shower yesterday, but he needed it. We simply do our job with him each day and don't let him alone for more than a few minutes of rest. We must keep him stimulated and happy each minute.
Please pray for the families and children who cope to get by each day. There are no days off, mentally or physically, and all that counts is today and how we manage to get by. Have the best possible Thanksgiving! Godspeed!
Wednesday, November 17, 2004 10:10 PM CST
We appreciate your checking in on Lucas!
Lucas is still on the BMT floor at CHOP in Philadelphia. He has been receiving IV antibiotics since last Thursday and Mom has been there with him the whole time. The nurses bring the meds and Mom administers them, gives him his feedings and changes Lucas. Most of the nurses are interested in learning about Lucas's life with MLD and what has been done. He is alert and watching DVDs and cartoons. He has had several bouts of spasms and Mom has been giving him Adavin which has been calming him, but also zoning him out at first. Our instinct now is that the Baclofen is no longer working for Lucas, but we have to stay with it for the time being. There is concern with his high blood pressure, but nothing showed up on his Ekocardiogram and another test they did yesterday.
This evening, Lucas went into surgery to have his port-a-cath removed from his chest. They feel it's a source for infection and at this point, he doesn't really need it. Mom said he did just fine and he was awake to hear Dad's silly jokes on the cell phone an hour after getting back from the OR. The IV is in his wrist and they cover it with solid cardboard to prevent him from taking it out. What's good about having it out, is that we don't have to get him to the hospital every four weeks to have it flushed, etc. Dr. Bunin has told us that as long as his skin(rashes) look OK and she trusts our judgment with that, we shouldn't have to take him for clinic visits that often. If we need blood labs done, we can go over to LabCorp on occasion and have them sent to CHOP. She said, there's no need to drive to Philly that often for appointments. We're not sure how often Dr. Kim (from the Seashore House at CHOP, their rehab facility and tone management team) will want to see Lucas, but she is planning, however, to give Lucas some Botox injections on Thursday while he's still in hospital. We're very interested to see if she can help to get Lucas in a comfort zone.
As of right now, we have been told that we can bring Lucas home Friday morning. Dad has been with Abby and she's very anxious to have Mom and Lucas come home. Dad's keeping Abby home from the school (1/2 days) the next 2 days and planning to visit Lucas with her and take him and Mom home Friday. Mom has been very pleased with the hospital and staff and feels the move to switch so far has been a good one. In reflecting over the last 2.5 years, Lucas has stayed in 7 hospitals (approx. 160 days) and had some tests canceled at an 8th hospital. We hope the fevers and infections stay away over the winter and that he can just be comfortable. He still manages to laugh and see humor in silly things, while struggling each and every day. Godspeed!
Saturday, November 13, 2004 10:10 AM CST
Update to Fridays Posting.
At 4:00 this Saturday morning, the on call doctor in BMT came in to tell Mom that the last culture came back positive for more infection, not known at this time. They are starting a new series of antibiotics and Lucas will be in hospital atleast through next Sunday the 21st. Most likely during this week, he will go into surgery to have his port removed as they feel it is more of a risk for infection at this time, but we'll see what they want to do. Mom and Lucas are doing fine. He's resting and watching CD's and cartoons. Abby and Dad will be driving over to visit today. Abby's Dance-a-thon for Jasons Dream for Kids is doing well and she's having fun, but she can't wait to see Mom and Lukey. Thank you for checking in! Godspeed!
Friday, November 12, 2004 1:47 PM CST
Thank you for checking in on Lucas! (Our last 2 attempts at updating this week were not successful, because of some glitches on the site.)
We had a lot to report, but for now we'll keep it abbreviated. Lucas's first visit to CHOP in Philadelphia went very well. The commute, facility, staff, and Dr. Bunin were great. We felt very comfortable there and look forward to going back. Hence, the next thing. However, we didn't think that we'd be back so soon.
After Tuesday's long visit to Chop, that night Lucas was very restless, uneasy and feeling hot. His temp was 102.3. Mom called Dr. Bunin who immediately told us to take Lucas to Monmouth Medical Center ER, not Philly. She said it's too far a ride for Lucas and they can communicate with her. After all day Wednesday in the ER, Lucas's labs, temp were doing fine. They took a few cultures, but the ER doc said he could go home. At 10:00 the next morning (Thur), Lucas's pedicatrician called that the cultures came back positive for some type of bacteria infection. After a call to Dr. Bunin, she said to get Lucas to CHOP immediately. (Dad left for Pennsy to work, 2 hours away and arrived, only to turn around 2 hours back to pick up Mom and Lucas and drive 1.45 hours to Philly.) They got Lucas in right away and started the IV antibiotics. He was admitted on the BMT Floor 3 and after some moaning and crying, he settled down. He prefers sitting in his wheelchair over lying bed. The new tests have yet to come back, but Dr. Bunin feels that we'll probably be able to take Lucas home on Saturday afternoon. Mom is staying with him and said the room is the best Lucas has ever been in.
Lucas is doing fine right now, but he was way out of sorts for those 3 days. We can tell when something is up with him, but he is doing his best to get back on track. Dr. Bunin has put Lucas on 3 new meds (actualy old ones he once took, but she wants him back on it): Penicilyn, Acyclovir and Bactrum. She altered his prednisone and upped his blood pressure meds. She felt he looked good on Tuesday and could see that the Prograf was working for him. She's very concerned about bone decay. He is still immuned suppressed and we have to wean him off the prednisone at the same time eliminate the GVHD. Eventually, the GVHD burns off, but this is the game plan right now. She knows Dr. Krivit and will get him back into the mix.
To note, Abby's Brownie Troop is holding a "Dance-a-thon" Saturday with the proceeds benefiting our local "Jasons Dreams for Kids" which helps local families with medical bills and vacations. They have helped us and we are happy to see the groups help out this great cause. God Bless our kids who fight each day to get better. Godspeed!
Thursday, November 4, 2004 3:04 PM CST
Thank you for checking in on Lucas and for all of the messages to him!
On our last update, we mentioned that Lucas had some congestion and it lasted several days and then it stopped. As far as his Gtube, we were getting concerned with the discharge around the tube each day he comes home from school. We took him to Dr. Teittlebaum, the GI doc, and he felt that the body jacket is now too small. Insurance will only pay for one a year, however, he wrote a script about the necessity for Lucas to have a new one made. Hopefully we will get it approved. Lucas was 55 pounds back in May when it was made. He's now 65 pounds and it is a bit tight on him. Either way, we have to get a new one. Hackensack did put Lucas on a new med, Clonidine. It's really for lowering high blood pressure which Lucas has, but it sometimes helps with tone/spasticity. We're keeping an eye on it and if it works, we could take Lucas off the Norvasc (blood pressure). They did have concern about Lucas's cardio vascular system and said we should have an EKG done and we'll save that concern for next Tuesday in Philly.
Mom spoke to Childrens Hospital of Philadelphia (CHOP) and Lucas has an appointment this Tuesday with the BMT department. We haven't yet made an appointment with Neurology there as we're waiting for Hackensack to ship Lucas's large file. Dr. Thompson, Lucas's neurologist was not surprised we're changing and he even encouraged it. He was very good about it and kept the door open if things don't work out in Philly. We're hoping it will be a good move for Lucas to be at a facility that works with other MLD children. 8 year-old Anthony Tomaino, from Toms River, NJ, just recently had a stem cell transplant at CHOP and we have been following his website. Mom has been in contact with his aunt and sharing information about CHOP and their family.
Lucas's current medications are: Baclofen, Prednisone(some rashes are still popping up, GVH won't go), Pepsid, Prograf, Norvasc, Diflucan and Clonidine (new). He still continues to have severe spasms and restlessness. He has slept through 2 of the last 3 nights, although, he wakes up at 5:45 am. He never fails to grunt or moan when a commercial comes on and it has become normal for him to make those noises all the time. There's nothing he can do to stop it. Lucas has been doing good in school and we think he enjoys it. He and Abby had a very nice Halloween weekend and respective parades at their schools.
For many of you who follow Lucas's life, you may remember when he went to Minnesota back in 2002, his mentor was Nathan, and his mother Rhonda Frachiseur from Allen, Texas, is holding an MLD Walk in Nathan's memory to raise funds for research. We always think about Nathan and will never forget what he and Lucas shared together. Rhonda, thank you for your continued support. Please pray for all of the children and their families who fight the daily battle with MLD and other diseases. God Bless!
Friday, October 22, 2004 2:45 PM CDT
It's been about 2 weeks since our last update, however, we've been trying since Tuesday, but the caringbridge website is not allowing us to send in our update. In any event, thank you for checking in on Lucas.
Things have been about the same for Lucas lately. Some good days and some bad. Last Thursday, Mom took him to Hackensack UMC for his 4 week checkup. She met one of the BMT doctors. He took Lucas off the Cyclasporine and put him on another immunal suppresant medicine Prograf in hopes of being able to lower the prednisone and not have his GVH flare up. Sitting there with Lucas and Grandma, Mom had a few questions for him, and for some unexplained reason the doctor said, "You know, I don't know anything about MLD, I don't want to ever learn about MLD, and you might want to find yourself a specialist!" Aside from their jaws dropping, he stayed for a few minutes and then they got Lucas situated and left for home. Mom called the BM nurse practitioner the next day to ask about a medication and told her we may be looking into transferring to another facility. Mom told her, "Its not what you are doing for Lucas that's the problem, it's what you're not doing for him because you don't know that much about MLD." Since March, 2003, Lucas has been cared for at Hackensack and keeping in touch with other families, we often wondered if the medical team at Hackensack had reached out to other facilities or doctors. Lucas is the only MLD case they have had and we do believe they have been trying, but our instinct is that they have never made the effort to look into MLD. The only other thing we can say is that we are in contact with another family about their experiences at Childrens Hospital of Philadelphia (CHOP) and they have told us that they have other Metabolic patients including MLD and knowledge of MLD.
The last few days, Lucas has been coughing and it sounds like he has some chest congestion. Mom has been giving him some medicine for that. Since he started the Prograf last week, he has been noticiably more alert, however, he's been too alert into the evenings. For some reason he takes little 1 hour naps and wakes up through out the night. We do see some difference during the day with him since he's been off the cyclosporine, but he's just not sleeping through the nights. Lucas now weighs 64 punds and growing. Mom did a great job with Grandma and our neighbor Carrie while Dad was away. Lucas was screeching with laughter when Dad came home. Abby was very excited and it was a wonderful homecoming for all. Aside from bringing home some stories for Lucas, the sacrifice on the family was too much and Mom had to deal with a lot. It's good to be safely home.
Please pray for our friends and their families. Godspeed!
Tuesday, October 5, 2004 9:12 PM CDT
Thank you for checking in on Lucas.
We were very saddened this afternoon to learn of the passing of Trevor Joiner, 8 years-old from Texas from Metachromatic Leukodystrophy. Trevor lost his little brother Ross earlier this year to MLD. This family needs our prayers and support at this time. Mom and Mrs. Joiner wrote on several occassions sharing ideas and stories. We are very shakened and upset.
Briefly, Lucas has been getting stiffer and more rigid. Dr. Thompson agreed with Mom to stop the Aleve and to up the Baclofen for now. Overall, Lucas has been uneasy and restless. He moans and grunts more and more. He's pulled his G-Tube out twice this past month. The blotches and rashes have come back and mom has had to up the Prednisone again. One of the few bright spots is school, although, he is coming home quite tired and his bus drivers, who have gotten used to us keeping Lucas going, enjoy his company. We must keep Lucas comfortable and hope it can be done with no more surgery.
God Bless the children who have passed on and their families. We will never forget them and their courage. Godspeed!
Thursday, September 23, 2004 10:39 PM EDT
We appreciate your checking in on Lucas.
Lucas has been making it to school everyday. We have him ready at 8:00 each morning. It helps out tremendously that Abby takes the bus at 7:40. We drove her to school last year and now she gets picked up and dropped off in front of the house. They pick Lucas up at 8:15 now, instead of 8:30. He's quiet when the lift picks him up and he comes home tired.
Yesterday, we got a call from school that it looked like Lucas had an allergic reaction to something. He broke out in hives on his right arm and his right eye was real puffy/closed. We went to pick him up, luckily he wasn't too upset. We drove around the corner from school where fortunately his pediatrician is. We don't know what caused it, but we didn't have to rush him to the BMT. The doctor gave him Atarax and as the day went on his hives went away and the swelling was less, but not fully gone until this morning. Since about Sunday, when we would change Lucas, he would start crying out. Mom had her guess confirmed that Lucas's displasia of the hip was imflamed. Except for some Aleve, the Dr. Therian (orthopedic) said there was nothing we can do. Lucas's PT Jon, advised us to avoid lifting him and moving him from the left side and being careful how we put him in his chair.
Today, Lucas had his monthly BMT visit and an appointment with Dr. Mazzola. Dr. Mazzola was concerned and sent Lucas down for X-Rays of his hip. No news yet. He also met with Dr. Brochstein and the rashes that have come back are nothing major and he told us to stay with the same regiment of drugs. Today's appointment was almost 4 hours and even though school was closed, Lucas still had a long day.
We have been giving Lucas regular showers and making sure his skin and scalp are moist and clean. You have to joke a lot to get him through a shower. The shower chair is very convenient and we can wheel right to his bedroom. His back incision has been looking a bit irratated the last week but keeping it covered has helped.
Abby has been doing good in school, dance and soccer. She is Lucas's best friend. She talks to us about him and shares her hopes and dreams for Lucas. We tell her to keep doing what she's doing and keep Lucas laughing. This Saturday, we're planning to bring Lucas to her soccer game and then a few hours later, shoot over to our men's town softball tournament for some food and drink. The teams in our town Little Silver have some great comradery and fun together. Lucas usually enjoys seeing Dad try to play and meeting the guys from the other teams in town. We then have Abby's family birthday party of Sunday. She turned 7 on Sept 18.
For 2 years we've used the web page to update how Lucas is doing, how Abby is doing and things that are going on in their lives. Once in a while to talk about the frustrations we have as parents, but we like to keep it mostly about Lucas. We mention many times our silliness, joking around, etc. to stimulate Lucas and get him through a day. This is one of those rare times we'll step out of character if you may say and mention something about us. When Lucas was diagnosed 2 years ago this day, September 23, that night after the neurologist told us, was simply awful. The image we have driving back home from the doctor, seeing Lucas in front of the house and running to us was so much that we drove by our house. He stood there and looked at us go by. We couldn't stop. We went back and held him tight. That night, we stayed up late crying and talking and wondering what to do. We asked why Lucas over and over.
We dedicated (and continue even more) hundreds of hours of time to many organizations and good causes. Our son wanted to be a doctor to help the poor. It didn't make any sense. Honestly, for Lucas and the other courageous children, to us there may not be an explanation, except that it happened. That's all. You search and find a way to deal with it, care for your kids and fight the thoughts of wishing Lucas could be like other kids. You move on, get stronger and accept what you have to do. Many people have and continue to help. Lucas was always excited when Dad traveled with the medical mission team with Dr. Wurmser and Dr. Orlacchio. Sometimes to areas of conflict. He was so happy to know these men and what was accomplished. Dad was asked to come along with our NJ team and some docs from Hawaii back to the southern Philippines (the area is safer than previous trips). Mom, knowing those 10 days will be hard, even with help from family, gave Dad the OK. She felt the docs wanted to see if Dad wanted to get back into it and that it would help Lucas. He leaves Oct 9. (Thank you Mrs. Dubin for making this trip $ possible.) This trip is for Lucas. His inspiration and spirit will be changing the lives of 1,000s. Dad shared many stories with Lucas and this is when Lucas decided he wanted to be a doctor. We believe you help others and don't look for recognition. Stay quiet and let God judge how you live. It's not easy writing about this, but Lucas loves the stories and it gives him strength. That makes it worth the sacrifice.
God Bless!
Sunday, September 12, 2004 4:17 PM CDT
Thanks again for checking in on Lucas!
Lucas started school last Wednesday and had a nice first day back. He finished the week with no problems. Abby starts school on Wednesday and hopefully the fall routine will kick in. Lucas had no appointments since our last update. Mom took him in for a fitting with his leg brace and it didn't fit. We really need to have a leg brace for his left leg, but they have to fiddle with it more. Mom contacted Dr. Thompson and we upped his Baclofen a bit. It doesn't appear the new round of Botox is kicking in as much as we'd hope for. His left leg is not as stiff as it was, but still not near where we'd like the flexibility to be. His left arm is what it is. We're starting to feel that nothing's gonna work 100% and that the disease will do what it wants. With the baclofen going up, we see him zoning out and tiring more. We feel that the disease has warded off everything they have tried for Lucas, some gains, but when we reflect overall, the disease with Lucas is still taking it's own course. This does not imply any urgency or giving up, he loves TV and laughing at silly stuff, but we see him struggling with each day and nothing has gotten drastically better. When he was on the risperdol(anti-psychotic) his temperment and anguish moments were milder. Dr. Thompson did not want Lucas on that med too long (severe long term side effects), but he gets upset easily now.
The daily grind of keeping him comfortable and stimulated goes on. His daily physical therapies go on. Certain moments and events, however, do raise his spirits and help all of us. Yesterday in Little Silver, Abby attended a soccer clinic put on by Vision/Peninsula Soccer and featured American Women's Soccer Team Gold Medalist, Christie Pearce Rampone. She is a legend and the most successful shore area soccer player ever. We took Lucas and she came over to greet Lucas with Abby and spend a moment before having to sign 100 autographs. Lucas reached out and touched her gold medal with a smile. One of the few events Lucas could watch a little (that wasn't a cartoon or video) was the womens soccer team matches as we told him he will meet the right full-back in a few weeks. She is a class act and helped us have a good day.
With the weather getting a shade cooler, we're able to get Lucas outside with his body jacket. When he is out, we have both AFO's on his lower leg, his body jacket and his left-arm splint on. Walks on the Sandy Hook bikepath are enjoyable. It is hard to find smooth surfaces out doors.
We appreciate all of your letters to Lucas and please remember in your prayers and thoughts our friends and their families who fight to get through each day. Godspeed!
Friday, September 3, 2004 9:48 AM CDT
Thank you for checking in on Lucas.
Last Friday, Lucas had another round of Botox injections, this time, in his left leg and left arm. It took 10 minutes. While he was under for the procedure, Dr. Thompson was able to get his left knee to bend almost 80%, which is good. It tells us that at least for now, we don't have to give consideration to any tendon release for his leg. Obviously, his feet aren't up for consideration at this point. He also said, his left elbow could use a tendon release from his opinion, but he deferred to Dr. Therian, the orthopedic surgeon whom we have a appointment with in a few weeks to re-examine Lucas. We still don't want to put him through any more procedures for a while. It's been one week, and we still haven't seen the full effects of the Botox with Lucas. We checked old journal postings and found the average to be around 9 days to see anything.
It's been a long time since we have mentioned anything about Lucas rashes, etc. from GVHD and that's because he hasn't had any and that's because we haven't lowered his prednisone, which is what Mom has called up today to confer with the BMT department about. He continues to receive daily physical therapies which generally are not easy for him. When he sees Jon, Janice or Carrie come into his room, he gets upset, but they work him very hard for an hour or more. Everyone agreed that the leg brace for his left leg was not working and had to be redesigned. Mom took Lucas to the vendor the other day for a fitting. His elbow splint is working fine, but as can be seen in the above picture, his left arm is always clinched/bent against his chest. We've also had him in the hot tub 3 times this past week. We picked up his mouthguard this week from Garden State Prosthetics and have been using it. He is keeping it in his mouth and it has cut down on the grinding, especially in the morning when he wakes up.
Lucas seems to be handling everything as best as he can. He continues to laugh, get upset at commercials between cartoons and just manage through each day. He starts school next Wednesday and will be starting the bus routine again. Abby starts the following week and continues to help Lucas. This past week we went to Point Pleasant and got Lucas on a few rides and hung out in the arcade. For $10, we got a ton of laughs from Mom's purchase of 2 ice creams with what the vendor and police called a counterfeit bill. She bought her favorite candy apple, took the change and bought herself and Abby an ice cream, when they said it was counterfeit. The police had to fill out a report and Lucas got plenty of laughs. Later that night, the police called back to tell us that after a review, it wasn't counterfeit. Lucas enjoyed Mom's adventure that afternoon and we told the police put it in the PBA fund. As humbling as Lucas's experience has been, our way to deal with things, making humor out of stupid or bad situations works for us. Lucas gets laughs from things that most people could never see where the humor is. He's been through enough in his life and we're determined not to take most things seriously.
We hope everyone has a great holiday weekend and that the hurricane weakens and causes very little or no damage in Florida. Please pray our friends and their families. God Bless!
Tuesday, August 24, 2004 8:51 PM EDT
Thank you for checking in on Lucas!
We have seen the physical therapists stretch his left leg to 70 degrees, but right after he tones right back. In other words, his left leg refuses to remain bent like his right leg. The splint that was designed for him while in Childrens Specialized Hospital is not doing the job. The PT's don't think it is properly designed for Lucas and not helping his leg. We are hoping to get a static splint made, similar to the one he has for his left elbow. His left arm still remains clinched, but it does relax a little more and we think the splint for that is helping. For Lucas's teeth grinding which is getting worse, today after school we took him to Dad's client, Garden State Prosthetics, and they are making his mouth guard free of charge. He opened his mouth when asked for the impression and we hope to have it by Monday. They said it may last only 3-4 months because of his baby teeth and age and they'll make another if needed.
Lucas still remains on prednisone, cyclosporine, pepsid, diflucan, baclofen, norvasc and miralax(bowel movements). We give him valium as needed and generally prior to some of his physical therapies. We have a BMT visit this Friday at Hackensack and hopefully, if Dr. Thompson can swing it, a Botox procedure for Lucas's left arm and leg. We see Dr. Mazzola on September 7 to discuss the results of the surgery. We're prepared to tell her that we are happy that he is off the zanaflex and risperdol and more alert, but he is still left with a lot of tone in his left leg. From all of the research and results from other patients, we were told the tone would be almost gone. Our concern about this is that we want Lucas to be comfortable and the surgery has not accomplished that. We will have to gradually up his medications again, making him more drowsy and less coherent, the thing we've been trying to avoid for him. Hopefully, the Botox will work and reduce the tone in his leg and arm, avoiding upping the medications.
Since the doctors don't know of any cases similar to Lucas's, we have decided to sign up for the MLD support group again and see if any information can be helpful to us. We have tried a lot things this past 1 1/2 years and Lucas still struggles to get through each day. Last week, we took him with his class to Point Pleasant Beach. Dad took him on a few rides and all of the kids played a race game. Trying to line up the wheelchairs to play that game was a challenge. He enjoyed the day and being out, but the ride on the boardwalk was not easy. His Scoliosis of the spine is too much for these bumpy surfaces. We think he managed to do fine and deal with the pain because of the excitement and being with his class. Being with several children in wheelchairs going down the crowded boardwalk takes some good maneuvering and patience. Trying to get all of these kids on a single ride took some doing. He really does enjoy his class and the teaching staff. Tomorrow, Wednesday, is his last day until September 8.
We continue doing his therapies at home and working with him ourselves. We do our best keeping him and Abby busy. Abby starts soccer this week and enjoys playing with our neighbors 1 and 3 year old boys, while she does work in the house and does physical therapy for Lucas. We are also busy coordinating the work needed to move the hot tub into the garage. Since Lucas's ramp is located in the garage, the hot tub will fit nicely in the back of it. It shouldn't be a major job and will give us the ability during the winter months to keep him going in it.
We ask for your thoughts and prayers for our friends, their families and children who struggle each day to get better and simply to just get through each day. Godspeed!
Monday, August 16, 2004 7:39 PM EDT
Thank you for checking in on Lucas!
Lucas went to school all of last week. He appeared to enjoy each day, however, he was very tired when he came home. We normally would keep him up for a few more hours in his chair, but he was too tired and hunched over so we put him into bed and turned his lights out for a short nap. They made a special brace for his left leg that we attach in an attempt to force more bend from his knee. He is definitely gradually getting more bend each day, but without the brace, his leg still stays most of the time straight out. Mom had a talk with Dr. Thompson and he is very surprised that this is the case with Lucas's left leg, 5 weeks after the surgery. Without knowing how this procedure has worked with any other MLD children or if any child with MLD has even had this surgery done, we can't measure it up to anything to figure out how Lucas is doing, etc. His grinding of his teeth has increased and we're figuring out what we want to do to help that.
Lucas's bowel movements have again become eratic and Mom had a discussion with the "GasMan" to figure out what has changed again. Lucas has been more responsive and alert and we believe that has to do with him being off the Risperdol and Zanaflex. He is still on a higher dose of the Baclofen that we'd prefer, but that's how it has to be right now.
Lucas has a followup visit with Dr. Mazzola in a few weeks and a BMT visit shortly. We do our best to get the toothbrush in his mouth and thoroughly brush but sometimes we're not so successful. The crust on his tongue has cleared up and that could be the result of the Risperdol and/or Zanaflex that was keeping his mouth dry. We've gained a few pluses from the surgery and they're enough to call it a success for that, but overall we don't believe it accomplished for Lucas what it has done for the other children that the doctors work with. Mom and Dad still feel that this disease is not very giving for medicines and surgeries that work for some of the other diseases. We have to try. Lucas still struggles and has pain each day and being uncomfortable has just become a way of life for him. He is still happy and laughs, especially at Abby. It was nice being home last week and getting him back to school. His therapies are still excrutiating for him, but he bounces back soon after their over.
With Lucas back at school, Abby started her one-week camp this week. Today, she was riding Lucas's bicycle with no training wheels up and down the street. Lucas was watching her and laughing as she rode by. This is the 1st time that bike has had its training wheels removed and Abby is 6. Lucas was riding the bike at 8 and it appeared before he was diagnosed that he would need the training wheels on for a few more years at minimum. She still doesn't like doing certain things or going places without Lucas. Lucas would go fishing, Dunkin Donuts, etc., with one of us and Abby prefers if Lucas can't go, she won't go.
Keeping Lucas comfortable and entertained is still our mission. He does laugh through the spasms and pain sometimes and we try to make laughter out of the toughest of moments. At the end of a normal day for us, we reflect on wishing we had more time and energy to write and say hello to our friends and families we have met along the way. Many of you write us and send Lucas messages and we can't begin to say how much it means to us. We rely on Lucas's webpage when we are up to it to reach out. Please pray for our friends and families who share our daily struggles with coping. God Bless!
Wednesday, August 4, 2004 10:06 PM EDT
UPDATE ADDED TO OUR LAST REPORT!
Thank you for checking in on Lucas!
Saturday, August 6: We came home with Lucas Thursday night. It was a happy homecoming for all of us, especially Lucas. He and Abby stayed up watching TV. We took Lucas for a stroll through the neighborhood on Friday and on Saturday we went window shopping in Red Bank and had a quick pint sitting outside at the Pub. Friends came over to visit and lift his spirits. He is off 2 medicines and Friday was his last dose of the antibiotic. His incision looks good, however, he still gets upset when we put him in his chair. His left leg is bending better and hopefully in due time it will be like his right leg is right now. He sits better than before. We are taking him to school Monday morning and getting him right back into routine. The new picture above is Lucas in a motorized wheelchair, forward only and no joy stick. The PT put him in it Thursday and he was able to push the button to make it go and take his finger off to stop it. He loved it.
(OLD UPDATE)
Lucas is coming home tomorrow, Thursday, August 5. We discussed together if Lucas would be better off coming home and decided we want him home. Mom spoke to the doctors and requested that Lucas be discharged on Friday, August 6. His incision is looking better and they agreed with her. They said either Thursday or Saturday. He was tentatively scheduled to stay until approx. Labor Day, but we started to feel that home was best for Lucas. Community, friends and family have proven to be Lucas's best medicine, along with his little sister. We were very satisfied with the therapists and admired how much they pushed Lucas and how all of the staff cared for Lucas. Our main concern was that Dr. Mazzola wanted Lucas there for intense therapies and we didn't feel that his daily regiment was any more than the amount of therapy he gets at school and at home with his therapists. Mom was very honest and up front with the staff today at Lucas's discharge appointment. She pointed out what she felt were somethings the hospital could have done differently. Lucas wasn't invited to the social gatherings and Mom speaking for Lucas and some other children, said that just because some kids can't communicate, etc., it doesn't mean they can't be stimulated or enjoy a group gathering. She also mentioned that Lucas's schedule was nothing near what we had anticipated. Mom did not hold back and spoke her mind.
It is very exciting to be bringing Lucas home. Lucas has been very fortunate to have courageous and brave roommates and families to share the days with and we'll miss their friendship. Lucas reacted with excitement and big smiles when he was told by Mom. The surgery has helped Lucas in some ways, but it has yet to be the "Home Run" we were looking for. Through most of his therapies this week, they worked him very hard and he cried through each session. We saw his left leg bend more than since the disease tookover his body. His left arm is still very rigid. In writing this update, we feel compelled to say that this disease has been very difficult and almost impossible to determine what surgery, medicine or treatment will work for Lucas. We still must be patient that the Rhysotomy will kick in and help Lucas gain some comfort. The last few days his demeanor overall has been better. He is gradually getting better with getting him in his wheelchair and keeping him up and out of bed. We have ordered his medicines and are prepared once again to care for him at home. To see him laugh and smile again is priceless. How he bounces back and manages through each day is amazing to watch. We have discussed together and are very certain that atleast for the rest of the year, no more surgeries for Lucas. We want to get his strength back and get him enrolled back into the summer program at school.
We will never get tired of thanking or ever forget how much many of you have helped us and kept our spirits up. We ask that you remember in your prayers and daily thoughts our friends and families who fight each day to care for their children and their own struggles in life. One day at a time. God Bless!
Wednesday, July 28, 2004 1:00 PM CDT
Thank you for checking in on Lucas.
Since last Thursday's update, Lucas has tried his best to get through his therapies. Some have had to be cut short, because of his pain and uneasyness. We haven't seen any signicant gains yet, although he is off 2 medications which is a start. They have added a few more PT's to the schedule, but each one to date is very difficult for him. Still getting him into his chair is painful for him. He has done well with Augmentative Speech and he has demonstrated he can still recognize things and people. They have given him Tylenol a few times. Last Thursday night, he woke up at 3:30 am and cried uncontrollably for 2 hours before the tylenol kicked in and just plain old fatigue kicked in. They tried some Adivan? to relax him but it wasn't enough. We requested Valium the next time and on Friday afternoon, it relaxed him much more and he fell asleep. Each night he is restless and moaning/groaning, but he has slept through most of the last few nights without any major outburst. It appears his being taken off the Zanaflex (muscle relaxer) and Risperdol (anti-psychotic) are causing some withdrawals along with the pain from his spinal cord when he moves.
Today, Mom noticed some severe leakage from his incision and it didn't look good. Dr. Fantasia, at Childrens Spec Hosp didn't like the looks of it and had him put immediately on Antibiotics. Dr. Mazzola came by to take out the stitches and that wasn't any fun for Lucas. Lucas is allergic to the dissolvable sutchers. They have been unable at this time to access his port-a-cath to run the IV antibiotics. It has overall been a rotten day for Lucas. His incisions for some reason just don't heal very well and no explanation.
We had been thinking about talking to Dr. Mazzola about bringing Lucas home the end of next week, Aug 6. Our thinking was to get Lucas home for his spirits and increase his therapies here. We realized the last several days how much we do with him in regards to therapy, not only medical needs, although we're not experts, but enough to keep him stimulated and to give him hope to be home. We estimate that Lucas has probably been in the hospital off and on since October 2002, including through next week, about 150 days. He's always been happier when he comes home and we're going to see what they suggest. The original game plan was to stay at Childrens until approx. Labor Day. The staff is excellent at the hospital and the location is suitable for families to visit. He has lost about 4 pounds since his surgery, but he continues to do his best to cope with this situation. He is taking his feedings better today. With the recent visits from family and friends, he has perked up a bit and in our opinion does his best to be strong and happy for everyone. Abby has been keeping busy at home and is very aware of her role with Lucas and how much she means to her big brother. She said this morning that "I know Mom and Dad have to take care of Lucas, but I'm doing OK and just want Lucas to be home everyday." God Bless!
Sunday, July 22, 2004 9:40 PM CDT
Same update from Sunday except for a few notes. Lucas has struggled through each therapy this week and it has also been difficult for him getting in his wheelchair. Moving him in bed can be challenging at times. They added a few PT's, so we're moving in the right direction. Mom was with him from Sunday night until Thursday. Dad takes over Thursday to Sunday. His incision is healing just fine, but the pain he feels being moved can't be prevented. He cries through most of his therapy. When relaxing, he still laughs at jokes and cartoons. We've seen a little improvement in his tone, but nothing on the scale we expected and he still gets the tightness and spasms. We'll just have to be patient to see if this procedure and followup treatment will work.
Thank you for checking in on Lucas.
Thursday afternoon, Lucas finally became more alert and recognizing Mom. This incision has been healing very well as Dr. Mazzola used nylon stitches this time to sutcher up the 8 inch incision. The incision went from his Baclofen incisions right up his spine. But it looks good. Early Friday morning, Lucas and Mom were transported from Hackensack UMC to Childrens Specialized Hospital in Mountainside. Dad was there to meet them and no sooner than Lucas was placed in his room, all of the staff, doctors, etc. came by for their questions. We decided not to put Lucas in a room by himself as they told us that he would then be in Isolation and we'd have to wear coveralls, gloves, etc. That's the rules, so we decided to go in a large room with 3 other children and overall the friendship and sharing has made it worth it. It has been good for Lucas, a bit loud, but more stimulating for him.
After the tiring question and answer period, we tried to settle in and meet Lucas's neighbors. Next door, Justin, a six-year-old boy run over by a speeding car who ignored the stop sign on an ice cream truck, he's physically the same as Lucas, but not coherent and just out of a coma. Ben across from Lucas, was playing in his driveway when the lawn mower ran over a baseball and shot it 75 feet to crack his skull. He's active and rahabing very well. The funniest little boy, Joynsell, had water on his brain, but is the life of place and makes Lucas laugh. All of the parents are very friendly and talkative.
Mom went home Friday night, and Dad stayed through to Sunday night going home with Abby. Our families got to visit Lucas the last few days and when Abby came through the door, Lucas's energy level went up. He smiled and the two of the them watched cartoons. She's magic for her brother. Joynsell played with Lucas most of the day and when we got Lucas in his wheelchair, which was very trying for him and painful (he cried for the first 5 minutes), we played hide and seek and had races through the halls. On Saturday, Dad took Lucas's to one of the rooms where a little girl had a birthday party. They had shrimp. Dad put a bowel of shrimp and cocktail sauce in from of Lucas and he grabbed a shrimp and brought it to his mouth, before Dad took it. He put his fingers in the cocktail sauce 3 times and Dad allowed him to put them it his mouth. He enjoyed the taste.
Dr. Armento, Lucas's phisiologist at Schroth, came to see him. He wants to taper off and soon stop the zanaflex, but he believes for his upper extremities, we have to take more time to lower the baclofen. He said the Rhyzotomy should help his lower extremities and a little with his left arm, but that won't change too much. We may try botox solely in his left arm in a few weeks. He did discuss briefly, the possibility of serial casting with his legs and a tendon release procedure. Moving Lucas is still difficult and painful, but Dr. Mazzola said we have get him up and about. The only problem right now that Mom will address tomorrow is that the main purpose for Lucas going there was for daily intense therapies, atleast 2 PT's a day. His schedule was given to us tonight and it showed only 4 PT's for 6 days. Dr. Armento had just stopped by at the same time and Mom showed him the schedule. He didn't agree with it and said first thing in the morning he'll straighten it out. We told him, we'll take Lucas home tomorrow if all he gets is 4 PT's. Between school and home care, he gets 7 a week. We don't think Dr. Mazzola would call that intense therapy and would insist on more.
Overall, Lucas had a very good Sunday and was very alert and happy to have family visit him. The room is right outside the nurses station and his bed is a little bright and loud. Mom told the nurses that they don't have to stop in and change him. Our diapers are much better and will last the night. If they smell a bowel movement, that's different, but he doesn't have to be changed, which means he'll sleep better. We'll wake up when they stop in for any questions. The staff is friendly and always offering to take care of Lucas if we need their help. There was some confusion with the meds, but that's been straighten out. The facility has a cafeteria with round the clock coffee and tea. The food is adequate and our bed is a bit small and rough, but atleast it's a bed next to Lucas. We can walk to local eateries. If all works out, it could be Lucas's home until Labor Day, unless he does fantastically well with the therapies and can be sent home sooner.
We continue to always remember and care for our friends from Minnesota, new website families we have met with MLD and all of our friends who battle to cope with each day. God Bless!
Wednesday, July 14, 2004 12:33 AM CDT
Thank you for checking in on Lucas.
According to Dr. Mazzola, she feels they identified all of the nerves during the surgery and we should start to see Lucas's tone get better and the spasms stop. She still wants Lucas on Baclofen and Zanaflex for a short time, before he is totally weaned off them. Lucas did not cry going into the OR and was actually laughing in Pre-Op. Lucas is still sleeping and resting quietly since his surgery ended Monday at 5:00 pm. He has not really acknowledged us or any videos on TV. He is still moaning and groggy. When they turn him to check the bandages, he does get upset and uneasy. After surgery, they could not get the the respiratory tube out of his mouth and he came back to his room with it. We tugged and tugged and finally he let go of it. We then noticed one of his loose teeth missing. The original anesthesiologist that got him under was called out for another case and a new one came in. She was not informed that he had two loose teeth. They had to send Radiology down to take a picture of his body. Fortunately, they located it in his stomach. If it reached his lungs, he would have had to go back into surgery ASAP.
He is still receiving pain medication through the epidoral. So far, the incision on his back looks good, no fluid or leakage, and no complications with it. Mom has tried giving him 2 feedings, but each one saw him retch and just unable to tolerate it. He is still receiving IV fluid. He's had a few temperatures around 101, but they've come down. He had not yet had a bowel movement and we've tried one suppository so far. Mom stayed last night with him as Abby is still at her Grandparents.
The game plan right now is for Lucas to be transported early Friday morning to Childrens Spec. Hosp. in Mountainside. We inquired with the BMT Dept. at Hackensack and Dr. Brochstein insisted that Lucas have a private room because he is still immune suppressed. Finally some great news. We can sleep in his room and we don't have to worry about him getting upset over noise and commotion from others, etc.
The hope right now is for him to finally wake up and feel stronger before he goes to Mountainside. Hopefully he won't have any problems with the incision and it will heal properly. He will be transferred tonight in Hackensack from the PICU to the 6th (BMT) floor where Mom can sleep with him.
God Bless!
Monday, July 12, 2004 8:02 PM CDT
Lucas underwent four hours of surgery in Hackensack University Hospital today. The neurosurgeon said that everything went well. Lucas is still on a morphine drip and is sleeping most of the time.
Mum & Dad are sleeping at the Hospital with Lucas tonight and will update further in the next few days.
Grandpa Barry
Sunday, July 4, 2004 9:26 PM CDT
Happy 4th of July!
Lucas started his shortened summer school program this past Thursday. We took him to school both days and hopefully he'll attend each day this week, which will probably be his last days of school until after Labor Day. They said he did great in the class and his teachers and assistants were very uplifting and energized.
On Thursday, Lucas had his pre-op physical exam by his local pediatrician. He tried to scrape some of the buildup on his tongue and said it was too solid. Since Lucas is unable to take anything by mouth, a crusty build up on the top of his tongue has developed over time. We brush his teeth and tongue each day, but it doesn't help his tongue. He said we'd have to someday take him to an orthodontist to have it removed, otherwise, Lucas did OK.
We have been trying to spend as much time together as possible, although, Lucas is at school and Abby started summer recreation downtown. We try to go out for rides. He had a lot of fun at the grocery store yesterday and today on the new walking path at Sandy Hook. We're just trying to keep things up beat and keep Lucas comfortable. He's enjoyed the hot tub and his baths in the new shower. With his July 12th surgery coming upon us, no matter how many times he's been in this situation before, it doesn't get easier dealing with it. This is by far the biggest surgery Lucas will have had. On Wednesday, Mom and Dad are visiting Childrens Specialized Hospital in Mountainside, NJ where Lucas will be staying for about 2 months. We've heard so many good things about the hospital. He'll probably be in a room with 2 or 3 other children and we'll have access in his room to our familar pull out bed/chair. We're making plans for Abby and keeping her busy with playdates, sleepovers, summer homework/assignments, etc. Lately she has been at times a little difficult with listening and other issues. We have to take into account what she sees everyday and how she deals with her big brother's illness. The webpage gives everyone facts and events, but it is difficult to convey feelings and the everyday struggles she has with her brother and watching Mom and Dad care for him.
On Tuesday, we take Lucas to Hackensack for his preadmission bloodwork. We are planning to take the kids to Lucas's favorite Zoo in Paramus before heading over to the hospital. Unless something very important comes up, our next update won't be until late on July 12 after Lucas's surgery. Thank you for checking in on Lucas and we ask that you remember each day the other children, friends and families who struggle each day for their health and wellbeing. God Bless!
Saturday, June 19, 2004 12:16 AM EDT
UPDATE TO SATURDAY'S MESSAGE:
After meeting with Dr. Mazzola for 1 hour on Monday, she explained the surgery and what they will do. They will lift 5 vertebrae in the spine and flip them back and test the nerves to see which ones are affected and sending the spasms or impulses to Lucas's brain. A sort of nerve velocity test. They will cut those nerves and then put everything back. It will be a 3-4 hour procedure and only done once. No fine tuning, etc. We asked if Lucas could have one week impatient stay at Childrens Specialized Hosp. and her response was she wants Lucas admitted in that same rehab. hospital, but in Mountainside (North Central Jersey) for 6 to 8 weeks. Our jaws dropped. They feel its the best thing for Lucas, but he'll be in hospital for almost 2 months including 4-5 days at Hackensack. No promises how he'll be after that, except that a few other children similar to Lucas are doing fine now. The consents were signed and we're now planning as was done with Minnesota, keeping Abby going for he summer. We are planning to stay with him each night, but come home in the morning. It should be as if he is school and away for those 6 hours.
Happy Father's Day!
Lucas has not had any hospital visits since last update. On Monday, we have a visit to Hackensack UMC with Dr. Mazzola and Dr. Brochstein to get their final views on the Dorsal Rhyzotomy surgery scheduled for July 12. These have been some difficult times, discussing it and just very concerned about putting Lucas through this risky surgery. Overall, we have tried everything out there and can no longer have his legs hyperextended causing him severe pain and discomfort. The medicines are zoning him out at times. We are also planning to discuss on Monday the possibility of admitting Lucas after his stay at Hackensack to Childrens Specialized Hospital in Toms River, NJ. Lucas's PT's have recommended that and feel it would be beneficial if he receives a solid week or so of intense therapies as was planned last October when the 1st Baclofen pump was put in.
It is weighing on us lately as the unknowns, especially, will this procedure benefit Lucas and how long will it last are our big questions. Based on the above, we're assuming it will go forward and are planning our schedule, work and taking care of Abby after July 12th.
Lucas had his last day of school on Friday. We went in to drop off gifts and say goodbye to his friends. He then starts summer school on July 1 at the same school with a new class and new teachers. Since we don't know how long he'll be laid up after this surgery, we told the school district to not sign up the bus service, as we'll drive him to school each day when he'll be able to go back.
Abby has one more week of school left. She finished softball today and we hope to keep her busy this summer. She is still on antibiotics from the deer tic bite and we haven't heard if "Fred the tic" was carrying lymes. She and Mom are going in New York City next weekend to stay and have fun with Mom's brother who lives in the village. Dad is hoping the weather cooperates so that he can take Lucas over to the racetrack. Lucas always loved the playground and seeing the horses at that track. Mom and Abby have put on hold their vacation plans back to Mom's hometown London due to Lucas's surgery.
Dad had planned to write Lucas a special Father's Day letter and tell him what he has meant to him, but he came to realize that he says those words everyday to Lucas. He tells him each day what Lucas means to him and how special he is. In Lucas's 10 years, we have many, many memories and truthfully few regrets. We traveled abroad, spent a lot time in New York City, played team sports, saw the Cubs in Wrigley, and got out of the house quite often. When Lucas was 1, a friend of Dad's told him that you'll never regret putting your ambitions and career on hold to spend more time with your kids. You can always pick up and expand your career down the road. Don't have my regrets he said. Dad took his advice in staying self-employed to be there everyday for Lucas's childhood. Now he works next door to Lucas's bedroom to be at his side in a second when he needs us. After supper most nights, Dad sits with Lucas on the old minivan rear seat at the top of the driveway sharing and watching the cars and people go by. We laugh and just enjoy sitting together like old times. That is why everyday is special. We have taught Lucas about charity and caring. His dream of being a doctor and helping the poor may not happen, but those who watch him struggle through his pain and still laugh has strengthened and inspired many people. He has been our inspiration every single day. The days may be long and tiring, but we don't complain. God Bless!
Friday, June 11, 2004 11:15 PM EDT
We'd like to start by thanking everyone for checking in on Lucas and continuing to follow his life and battle.
Lucas continues to have good times and bad times. Good times with laughter and bad times with spasms and restlessness. Overall, the last few weeks have been more positive. Since our last update, Lucas has had 2 visits to Hackensack UMC. One scheduled and one unscheduled. The unscheduled visit came last Thursday when late in the afternoon Mom received a call from school that one of his classmates had come down with the Chicken Pox. A call to the BMT resulted in having Mom (Dad was in Pennsylvania) get Lucas to Hackensack immediately for some shots to help ward off his getting infected. We have to monitor over the next several weeks as that's the incubation period. He was back in school the next day.
This past Tuesday, Lucas had his regular BMT visit at Hackensack. Dr. Thompson was available to see him and discuss the meds. With the rashes back in full swing due to the GVHD, Dr. Brochstein had us double his Prednisone and within a few days it was gone. We asked if he'll ever be able to stop the Prednisone, but there is no way to tell. His skin and scalp look much better. Mom and Dr. Thomspon discussed the benefits of the surgical procedure "Dorsal Rhyzotomy" being performed by Dr. Mazzola. He advised us at this point that we go for it. We agreed that it is the best option for Lucas right now, however, we have a June 21 consult with all of the doctors to determine if Lucas is even medically eligible for it. We feel confident it is the right thing to do for Lucas with some risks, but they must determine if he could go through it. The surgery has been scheduled for July 12 and we estimate a 5 day stay for Lucas. Dr. Thompson also had us lower his Baclofen as he was concerned that after seeing Lucas he was not very responsive and too subdued.
We have been given the OK to continue with giving Lucas each morning several ounces of organic coffee for his BM's. It's a constant daily struggle. It's good news when his daily school report comes back and they've jotted down that he had a BM. Lucas went to school every day except for the 2 days we pulled him out. One day was his BMT visit and the other day was when we also took Abby to Wescoeville Elementary School just west of Allentown, PA. During March, the students and staff, headed by Mrs. Crompton held "Pennies for Lucas" as a fundraiser for Lucas. We finally got the chance to go and Lucas managed 1 3/4 hours in the car. All 600 students got to meet Lucas and our family and there were 5 huge birthday cakes for everyone. Lucas was very excited and had many laughs thanks to the students. The 5th graders sang Happy Birthday in Spanish to him. It was a wonderful visit for all of us and we thank everyone there for your support and caring for Lucas.
We've tried to get Lucas out of the house as his health and weather would permit. Last Saturday night Dad took him to a local minor league baseball game. It rained and drizzled the whole game and we stayed with friends through 7.5 innings. Dad had to take him into the first aid room to give him some meds and remove his body vest. Lucas got out of sorts and it took about 30 minutes for him to calm down. The ticket manager found us and gave us another 5 tickets to a future game for sticking around. Tonight we took him to see his friends play their final baseball game. All of the kids and parents came over to say hello and some of the kids did a great job in making him laugh. With the game very close with 2 outs left, he began to cry and get very stiff. He managed to hang in there to the end, but he was crying and experiencing much discomfort. We got him home fast and he settled down when he got home in bed.
Last weekend, Abby and Mom went camping overnight with the Brownie troop in the rain. They had fun and it was a new experience for both. On Sunday morning, both came home and we checked for ticks. Unfortunately, we found what the Pathology Dept later confirmed to be a deer tick behind Abby's ear. As a precaution, she is on antibiotics for the next 3 weeks and she's doing fine. Still waiting on Lyme results. Yesterday Abby's 1st grade class had their family booksigning in school and Mom and Dad attended. She talked about her brother and showed pictures with his wheelchair. She doesn't hesitate to write down or show in pictures how she feels about Lucas.
We'd like to thank everyone again for your support and concern for Lucas and the positive support and strength you give us. Please pray for all the kids and their families who struggle each day with severe illnesses and for those of our dear friends who have passed on and who have affected our lives. Godspeed!
Wednesday, May 26, 2004 10:19 AM CDT
We are getting into a routine of updating every 2 weeks and wish we had more time to do it more often.
It's been 2 weeks since Lucas had Botox in his left arm and leg. It took longer then expected to kick in, but it has not penetrated the muscles in his left leg. His left leg is still very hyperextended and causing him much discomfort. A follow up call with Dr. Thompson resulted in upping his Zanaflex and discussing possibly in a few months putting all of the Botox in his left leg. If that doesn't work, we then have to consider the possiblity of major surgery with the dorsal rhyzotomy. This procedure to be done by the neurosurgon Dr. Mazzola, would cut the nerve in the lower spinal cord which would reduce the spasms sent to the brain from the lower extremeties. It could take 4 hours and put Lucas at risk, but we are doing everything possible to avoid his knee becoming totaly fused. We just have to wait and see how he does over the next few weeks.
Last week, we took Lucas to have his body vest fitted. It had to modified for a few minor items, but it fit him very well and he sat in his chair a little more upright. We had to buy many teeshirts and cut out holes for his G Tube. It still does not prevent him getting tired and he still has problems holding his head up later in the day. We had a consult with the orthopedic surgeon Dr. Therian who examined the vest and he was very satisfied with its fit on Lucas. We discuss the options of surgery for his spine, feet and knee. Unfortunately, he said none of the surgeries are an option and that we're doing all we can at this point. It takes both of us to fit it on him in the morning and it can be a bit hot on him. He doesn't seem to mind it too much.
Last Friday, we took Lucas to the gastro doctor (as we tell Lucas, "the fart doctor," to examine his G Tube. We were concerned with how loose it was and some of the secretions coming out of it. He said that since Lucas has lost some weight, that the balloon is not as firm on his stomach. He showed us a fast way to replace and he also put like a "washer" to firm it up against his stomach.
It's still the same story with Lucas on a daily basis. We are now convinced and confirmed it with the gastro doctor that the medicines are causing his whole bladder system discomfort and his bowel movement has a lot to do with mood and pain. We were advised to try and limit coffee for him as that has some complications in this whole thing. At least for now, he's doing better with BMs and urinating. He continues to have therapies and each session is very difficult for him.
On a lighter note, last weekend we put together 3 consecutive days of having Lucas out of the house with his body vest. The new locking system in the van gives us incentive to get out and give it a shot to go somewhere. He got to see many of his friends over the weekend and we took him to Pt. Pleasant boardwalk where he took in the sights and sounds. With his scolerosis and pain he feels going over bumps, the boardwalk is not the smoothest of rides. But once he is out and seeing people, he seems to like it and helps him, as well as Abby and us. We have had him in the hot tub several times and worked on his left leg, but it has been difficult getting it to bend, although he enjoys being in the tub.
Abby is still keeping very busy and for 2 Saturdays at softball practice she made us very happy. After her watching us work and work with Lucas to hit a ball, etc. she learned real fast and wallops the ball for her tiny build. In watching her athletically and reading books, it is very bittersweet seeing in Abby what Lucas could never do. Everything for him came very hard or not at all and to see Abby doing well makes us feel very grateful and blessed. She has Lucas's stubborness also, but that's OK. We continue to think of all of our friends and families we met in Minnesota and also the new MLD families at Duke. Thank you for following Lucas's journey. GodBless!
Tuesday, May 11, 2004 8:22 PM CDT
A belated Happy Mother's Day!
It's been about 2 weeks since our last update and Lucas had 2 visits back to Hackensack UMD.
Last Monday, he had his regular monthly visit to the BMT clinic and we had a review of his meds. Dr. Brochstein told us to lower his Prednisone and to officially stop giving him the Cellcept. This combination was utilized to help Lucas try and finally eliminate the GVHD. It was also decided with Dr. Thompson to give Lucas one more attempt with the Botox injections. The hope is that by concentrating on his left arm and left thigh area only, with more of a dosage, we may see it work this time. The dose they can give depends on his weight and as opposed to last summer where Lucas received it twice on both arms and both legs, they can use the same amount of Botox, but put more in the most extreme problem areas of his body. We were happy with the visit and planned Lucas's Botox visit for today.
We were up at 5:00, got Abby off early to friends for school and arrived in Hackensack at 8:45. As opposed to an OR visit, Dr. Thompson planned to do it in the BMT procedure room in the Don Imus Building. Prior to the procedure, we saw Dr. Brochstein and showed him the rashes and the GVHD coming back. He said to stick with the changes he suggested and monitor it. The anesthesiologist got Lucas under fast as he hummed to sleep. Everyone laughed and Lucas smiled as the doctor started asking about Lucas's previous dealings with being under and his meds. Dr. Thompson jokingly told her you don't realy want to know. We have lost count of how many times he has been under and we realized he has never had the same anesthesiologist twice in 1.5 years. Dr. Thompson came for us in 15 minutes. Lucas was awake as we walked in and smiling. A few jokes got him laughing more and this was very special to see. We're anxious to see if it will work for him this time, but Lucas seemed relieved that it was over and we were on the road by 12:00. For the remainder of the day he was alert and happy.
Over the last few weeks he has had some bad days, but except for his hospital visits, he has not missed school. He now has a new driver and rides to school with a little boy in his class, Daniel. It's better for him to go directly to school and the new driver is also very friendly. You take a big interest in your son's drivers and his regular drivers have been extremely kind and friendly. On Saturday, we took a ride to a country market as a family and he cried all the way out and back. The van is great, especially the new wheelchair locking system, but it is very hard for us to pick up and just go. He seems to be happier home with his cartoons and videos and the cats, Lilo and Stitch. We have given him a few showers and it has gone well. We openned up the hottub on Sunday and it took both of us to keep him in a sitting position and working his limbs, but he came out looser and more relaxed. The hottub works so well for him and it is one of the few things he enjoys and looks forward to. We are going to be diligent about getting him into it. Abby has been under the weather lately with colds and we have been trying to do special things with her. She's still her big brothers best medicine.
As we reflect on our lives and our son's life, many things go through our minds lately. What's important, what's a waste of time, etc. But right now, our main focus and thoughts are on the fact that on Thursday, May 13, Lucas will turn 10. Thinking back to his prognosis in the fall 2002, he has reached an age that we originally were told he would not. We weren't sure back then if he was even a candidate for a transplant. The stem cell transplant, although a rocky, difficult road, with Lucas still dealing with GVHD and the loss of his ability to function, eat, talk and walk, dealing with daily spasms, stiffness, etc. has given us priceless time with him. After seeing him laugh at the Harry Potter video on the way home from the hospital today, it made us realize our son, who was known for his laugh, smile and ability to say the funny thing at the right time, is still our Little Luke. God Bless you for checking in!
Wednesday, April 28, 2004 9:32 PM EDT
We try our best to update each week, but sometimes we want to wait until a doctors appointment, etc. to cover all relevant news about Lucas.
Lucas has been taking the Zanaflex now for about 2 weeks. He is not experiencing as much discomfort, spasms and stiffness although his left leg has become very stiff. He is not as comfortable as we would like him to be, but we're starting to run low on ideas and options for Lucas. We say that after Lucas's visit last Wednesday with the Pediatric Orthopedic Surgeon that Hackensack had recommended we see. It turns out his office is right here in Little Silver so we had a 2 minute drive. They took X-Rays and found it very difficult to maneuver Lucas to take the proper pictures of his feet and legs. Dr. Therrian met with Lucas and then read Lucas's history and X-Rays. He informed us that in 14 years of practice, he has seen and helped children similar to Lucas physical disabilities, but he has never come across a case as complicated. He had to agree with the Orthopedic Surgeons and the neurosurgeons at Hackensack that what Lucas needs to have done, is too risky due to possible infections and skin breakdown.
He informed us that his left foot is probably too far clubbed to be corrected. He thinks he could help the right foot, but it does not make any sense if he cannot help both feet. The operating time estimated for one foot is a minimum of 3 hours and it is too long. The X-Rays also revealed that Lucas's Scolarosis has progressed to the point that his spinal cord is now 46 degrees curved. To correct it surgicaly again would be too high a risk of infection. As with the baclofen pump Lucas can not tolerate any hardware inserted in his body and a rod would be no different. Also he was not sure if the disease would continue attacking Lucas's body and reverse what he did. He spoke to Lucas directly about the above information and Lucas lay there quietly. We have internally been hoping that he could give us better news, but we're used to the short end. He recommended that we stay with the AFO's for his feet and that we have a body vest made for him to help slow down the Scolarosis. It won't correct it, but it should help. On Monday, we took Lucas's to the Orthotics specialist and he covered Lucas with Plaster of Paris to build his vest. He cried through the entire procedure which was 1.25 hours, but he got through it. What Dr. Therrian told us is that because Lucas' left side is weaker and with all of the other complications, any bumps or jolts cause him discomfort and pain. It explains why the smallest of bumps in his wheelchair hurt. For Lucas to go to school, be pushed around in his chair, have a diaper changed, etc., is very trying and painful for him. Each day we wheel him onto the school van, we know it will be difficult for him, but yet he leaves with a smile and his drivers April and Paula love him. They've said many a times he knows what's going on, however, they ask us how does he deal with it knowing the whole situation. We answer simply by saying we don't really know, but we're not going to stop making him laugh and making each moment positive.
To help keep each moment and his days home positive, last Monday Mom and Dad went to the SPCA to get a cat. Abby has been after us and we finally went. We found one that we really liked, but the Vet Technician recommended against it based on Lucas's situation. Then we found out a SPCA worker had fostered 6 8-week old kittens and they were just bought in for adoption. We spoke to her and checked them out. We decided that we couldn't get just one, since it would be stupid to have just one named Stitch. We decided to take 2 and Mom took Abby to pick up Lilo and Stitch. They have been a wonderful addition and have added so much for both Abby and Lucas. We can add this one to the short list of good decisions and they are the opposite of CindyLou. Both kittens sleep and snuggle with Lucas and he has been able to pet them. Both jump up on his wheelchair and sleep on his lap. When he sees them he laughs as the two sisters play and entertain Lucas and Abby.
On Saturday, we went on a family outing to Petland and picked up a little house for them. On Sunday we went down to Sandy Hook and went on the new smooth, bike/jogging path along the beach. This Lucas liked as he could see the ocean and parts of the trail go through the woods and old army gunnery posts.
On Sunday, we gave Lucas a shower in his newly finished, larger shower stall. It was much easier lifting him in/out over a 4 inch lip as opposed to the bathtub. The movable shower makes it better to use. Mr. Doherty did a great job and Mr. Caruso from the Ye Olde Pie Shoppe dropped off coffee and pastries while they worked on it. We don't have the shower seat on wheels yet for Lucas, but it is much easier lifting his 60+ pound body in and out.
We ask that you continue to pray for the families and children who are fighting severe illnesses and for those of our dear friends and their children who have passed on. We think of our brave friends and their courageous kids daily. Godspeed!
Sunday, April 18, 2004 7:01 PM CDT
Last Wednesday, Mom called Dr. Thompson (Hackensack) to discuss our next move with Lucas. Lucas was becoming very restless, rigid, and crying more. We were beginning to feel that the Baclofen was simply not working anymore and making him too much out of it. Dr. Thompson agreed and decided to put Lucas on Zanaflex. We lowered the Baclofen and started him on the Zanaflex with both drugs working in tandem. Dr. Thompson advised that with lowering the Baclofen, however, we could see Lucas experience withdrawals similar to last October when the Baclofen Pump was taken out of him for the 1st time. He told us to have patience. He was correct. Lucas has been very uneasy and having bouts of crying the last few days. We still don't have any idea how much of his episodes are from the change of meds, pain or from him realizing his perdicament. We sometimes think he experiences moments of depression and it is difficult figuring out what to say or do. For right now, we sit with him and hold him as much as we can. He has few times where his left side is loose as most of the time his left leg is hyperextended and his left arm is clinched rigidly against his body. The physical therapists have been working him very hard in trying to slow down the tightness. He cries through most of the sessions. We have not had to vent his G tube lately as the gagging/choking appears to be under control with the Pepcid. On another side, he loves holding our hands and having us lay in bed with him so that he can put his right arm around our head. He squezzes with such force with his right arm and often pulls your hand in for a kiss. He is still able to show his love for us.
Last week his uncle from NYC came to visit for Passover and paint in Abby's room. He used to call him, "uncle latefellow." Lucas enjoyed Easter in Pennsylvania with his family and was entertained by the dogs, cats and cousins. We admire how everyone jokes with him and gets him to laugh and how he perks up seeing his family. It helps us cope and keep everything positive for him. The ride out to PA went fine as he slept 1/2 the way. Coming home he was restless and crying the last 20 minutes. Let's face it, driving in New Jersey on a holiday or any other day makes anybody cry. Abby and Lucas were off from school all of last week. It rained most of the week and when Dad finished tax season Thursday afternoon, the sun came out and we took Lucas for a short walk. He really doesn't like going for walks and today we only went around the block as he was not liking it. Yesterday was another first in a very long time, as we went to the supermarket as a family. We got in some occupatinal therapy in the produce section by handing vegatables to Lucas to grab with his right hand and put in the plastic bag. He seemed to enjoy the surroundings and being out. We count our blessings that we are able to transport him like we can and take him to the grocery store. Food shopping is something you take for granted and have to do, even though Lucas can't eat, for us it was a major family outing being out of the house. Last year, post transplant, we couldn't take Lucas anywhere near plants or vegatation.
Even with the van to get around with, we are learning that Lucas's condition prohibits us from doing the things we had hoped we could do. If he is happier at home watching cartoons and being entertained by Abby doing silly things, then that's how it will be. Our new house helps make it easier staying home. We still plan to try and take him places with the weather getting warmer and if he doesn't like where we go, we won't go back.
Hugh Doherty from town started working on our bathroom on Friday. We should be taking Lucas into the new shower by this Wednesday. We'd like to acknowledge the continued generosity for Lucas and our family from Phil Shaheen of Builders General Supply. Also, thank you for the continued donations and support for Lucas. Thanks again to Gethsemane Lutheran Church/Good News Christian Preschool in Keyport, NJ and Mrs. Crompton and everyone at Wescoesville Elementary School in Pennsylvania. Please remember in your prayers and thoughts all of our friends and families from RMH in MN and all of the MLD children and their families. Each day we think and pray for everyone we've met on this journey and want you to know that. Also, please remember the young women and men who protect us. Godspeed!
Wednesday, April 7, 2004 10:31 PM EDT
Since raising Lucas's prednisone dosage, the rashes and flakiness have all but gone away. His skin is looking fine as Mom only has to put Protopic on a few patches. Lucas doesn't go through the entire day without some kind of spasm or stiffness. Mom and Dad are convinced that contributing to Lucas's restlessness and spasms is his inability to have a regular bowel movement. Mom has been giving Lucas 1/2 a cup coffee a day and it's been working. It seems after having a BM, he's a bit more relaxed and sitting more comfortably. Since having the 2nd Baclofen pump taken out, we have noticed that Lucas is more subdued and not as attentive. It has reduced his already very limited motor skills. This was one of our major concerns in that going back to the Baclofen through his G tube and being on such a high dose, it would sedate him too much. We can't lower the Baclofen because he needs the higher dosage to relax his muscles and cut down on the spasms. Dr. Thompson is looking into alternatives and different combinations.
Lucas had his monthly visit to Hackensack on Monday. They took his labs and flushed his port. All of his blood counts came back great. We discussed keeping him at the same Prednisone dose even though he already has Osteoperosis, and since he has been on it for 16 months. They're concerned if it could be weakening his bones further. We must eliminate the GVHD first and worry about the complications later. Lucas was in good spirits on this hospital visit and we believe that was because it was the first time we drove to the hospital in the new van. Once we got him in his wheelchair at the house, he didn't have to get out until we got home and put him back in bed. He was much more comfortable sitting in his wheelchair and he was able for the first time in 13 months to sit comfortably in our vehicle and he could see all the surroundings. He even had a few cat naps both ways. Last Friday Abby tested positive for Strep and was put on an antibiotic. Mom then took Lucas by herself to the doctor on Saturday. Lucas was his last patient and the doctor said he only had some congestion in his chest, no strep. With the van, we aren't as restricted for either one of us to take Lucas anywhere and we can see how much more freedom we'll have to take him places.
Last Friday marked a major accomplishment by Lucas as last week was first time since June of 2002, that Lucas completed a full 5-day school week. We are extemely proud of him for that accomplishment and made sure he knew it took a lot of courage and fight to reach that goal. We'd like to thank everyone for your continued support and prayers for Lucas and our RMH families and friends. We wish everyone a Happy Passover and Happy Easter! Godspeed!
Sunday, March 28, 2004 3:50 PM CST
We're a few days late with our update.
Lucas has been going to school each day since our last update. We lowered the prednisone, however, his rashes, flakiness and itching came right back. Dr. Brochstein, BMT, at Hackensack wanted to see Lucas last Monday. He agreed that the GVHD has been very stubborn with Lucas and that we have to raise his prednisone levels. Within a few days, the rashes subsided. No plans to lower it again. We still monitor his system closely and keep close track of his bowel and urine movements. Some of his discomfort comes from not going for 4-5 days and when we think it has been long enough, we start giving him the laxatives, etc. and after going he is more relaxed. We have come to realize that it is normal for him to be very restless and uneasy. The spasms and stiffness are still very much with Lucas each day. We've had talks to Dr. Thompson, Neurology, and he is researching a few drugs and their potential advantage to Lucas. His incisions are healing just fine. He still has some sleepless nights, but they've become routine for us to comfort him and get him back to sleep.
We also want to thank Gethsemane Lutheran Church (Lucas's old preschool) and Mr/Mrs. Collier from ShopRite and the volunteers for your dedication Saturday at the pancake breakfast for Lucas's benefit. It was great to see everyone and for everyone to meet Lucas, and it has been a long time since we had taken Lucas somewhere other than hospital or school.
We have received word that Lucas's van should be in NJ early next week and that we hope to have it in our possession by next Friday. With the weather getting warmer and tax season winding down, we are anxious to get Lucas and Abby out and about and do a few normal things. We again want to thank everyone for your continued support and prayers for Lucas. Please continue to remember in your prayers the other children with MLD and all of our friends and families from the Ronald McDonald House in Minneapolis. Also please pray keep Maddy Russo in your prayers, a 6th grader in Little Silver who is fighting bone cancer. Godspeed!
Tuesday, March 16, 2004 10:48 PM CST
We kept Lucas home through Monday after leaving Hackensack UMD last Monday. We sent him off to school today in the snow. They said he was very quiet, for Lucas, that means not smiling and just staring. He came home in the sleet and freezing rain and the driver said he couldn't keep his head up. He looked real tired and out of it. By 4:05 you could hear a few laughs from him as Pokemon and Yu-gi-oh were on. They seem to pick him up a little. He now enjoys watching "Steve Urkle" and "Ed, Edd and Eddy." He'll laugh through most of those programs. Most of the time right now, he is quiet and doesn't show much emotion when he is not in pain. When something is wearing off or he is near his next dose of medicines, he gets restless and very stiff and tight. We began tapering off his prednisone and the rashes and flakiness came right back. The BMT docs had us up it again and things looked better in a few days. The GVHD has been very stubborn with Lucas. This time, there is no indication when he can stop taking the immune suppressed medicines.
Each day has moments of severe discomfort for Lucas and at this point, we're doing everything we can. He simply puts up with it and eventually the pain and spasms simmer down. His incisions are healing just fine. Were're actually surprised when we wake up and the sun is up. Meaning, we've actually slept through a night without him waking in pain. Abby has been doing fine and keeping busy. She's still her big brothers best medicine.
Gethsemane Lutheran Church and Good News Christian Preschool in Keyport, NJ are doing another fundraiser for Lucas. On March 27, they are having a pancake breakfast for Lucas's benefit. Last year they held a very successful spaghetti dinner for Lucas. We again thank everyone for your support and help.
On the van front, we received a call from Indiana today that they have ordered transport to get our van back here to NJ. Great News! We are still working with an Advocacy Group in preparing our application for submission for some type of reimbursement. We hope by the end of next week the van will be in our driveway. We enjoyed the few times we got to the boardwalk last year and hope the new van gives us the incentive to get Lucas out of the house down to one of his favorite places to be. He has always enjoyed watching the seagulls fight over french fries. Thank you for your continued support and praying for Lucas. Godbless!
Tuesday, March 9, 2004 11:57 AM CST
Lucas came home from hospital Monday afternoon. He was asleep from Friday afternoon post surgery until yesterday, Monday, 1:30 pm. He had rested quietly that whole time even after being moved from PICU to the BMT floor. When Dad and Abby came to pick him up, he gradually woke up and Abby once again got him to smile. His incisions look fine and we don't have to be as concerned now with them since the baclofen pump is out. The doctors always fear meningitis when a catheter attached to the spinal cord is infected. They stopped the antibiotics as the cultures came back negative. He has started his normal baclofen dosages and feedings and the BMT doctors are now weaning him off the cyclosporine and prednisone, which is good. He has had spasms, but he appears to be comfortable overall. He gradually got more with it last night and was smiling like old. Abby slept in with Lucas and he was definitely happy to be home. He spent 4 days in the hospital, but was only awake for about 3 hours of it. We'll be keeping him home until his incisions heal and then we'll try to get him back to school. He has another visit to the hospital in two weeks and we'll discuss options then. In one strange way, due to his Graph vs Host Disease and our constant monitoring and applying creams to his rashes, Mom was able to see something strange with the (December) incision on his lower back. We called Hackensack immediately and they immediately removed the baclofen pump to prevent any further complications. The main thing right now is that he is home in bed enjoying videos and recognizing his family.
Thank you again for your concern and checking in on Lucas. Godspeed!
Friday, March 5, 2004 10:06 PM EST
Lucas went into surgery at 3:00. Mom and Dad were extemely upset and very disappointed, mostly that Lucas has to pay the price with surgery and the unknown of what to do next. He knows what the blue scrubs mean, but this time his only emotion was a little crying as they wheeled him out of the OR and up to the PICU. He is resting quietly right now. The catheter leading from the baclofen pump to his lower spinal cord had broken the skin. It's to long a story to describe everyone's theory, but his having to lay on his back most of time hasn't helped. The fear of bacteria infection by all 4 doctors involved had him rushed into surgery immediatly to have the baclofen pump removed for the 2nd and final time, and IV antibiotics started right away. At a minimum they have determined that Lucas's body cannot handle this or any other type of foreign object and we are back to the drawing board. The doctors know Botox will not work for him as when Lucas had his 2nd Botox injections they failed to ease the spasticity and stiffness and made him more agitated. He's back to Baclofen through his G-Tube for now and will be on Morphine through Saturday. If the coultures come back negative, they will stop the IV antibiotics on Sunday and send him home. Mom is incredible in communicating with the Doctors about Lucas's meds and dosages and what we should do. Drs. Thompson and Mazzola were very upset and disgusted for the way things work out for Lucas. But they are determined to help him and there are a few other drugs, maybe not common ones, but something to think about. Dr. Mazzola talked briefly about a surgical procedure called Dasal Rhizotomy, where we believe they remove bone at the base of his spine to help the tightness of his legs. It doesn't help the arms, but as long as Lucas can move his right arm a little, we would try anything to help his legs. He doesn't move his left arm at all without our pulling it for him. We're going to wait atleast 30 days to make a decision. The pump worked the first 8-9 days in October until he got the staph infection, but since then Lucas has struggled and suffered. We want him home ASAP where Mom and Dad and Abby can get back to caring for him. Right now we are very hurt and down, but for Lucas's sake we have to keep the jokes and silliness going.
On a positive note, a big thank you goes out to Mrs. Crompton, the staff and students at Wescosville Elementary School in Wescosville, PA. Mrs. Crompton invited Dad yesterday to speak to each class K-5 about Lucas and they were very concerned and asked very good questions. Lucas's picture is up everywhere in the school as they are doing a "Pennies for Lucas" drive. Thank you for the privilege to share with the kids.
As mentioned before, Jane and Jeff Trimper in conjunction with Duke University doctors have established a foundation to raise research funds specifically for the leukodystrophies. Their goal is to develop a way to repair the myelin sheath. This protects the nerve endings in the brain, but this is what our kids lack. We are mentioning this at this time to ask anyone who would be willing to help or could possibly have their company contribute to help us again. Unfortunately, there are now 11 children we know of that suffer from MLD. There is some research going on in this area and we feel it is extremely critical that all efforts and energies be directed to this area. For additional information to learn more about the foundation, please log onto the Trimper childrens' website at www.caringbridge.org/mi/trimpermld. (Trimper Children Foundation, c/o Saginaw Community Foundations, 100 S. Jefferson, Suite 201, Saginaw, MI 48607, Tax No. 38-2474297). Please check their website to learn more and see if you can help. Thank you.
Godspeed!
Thursday, February 19, 2004 9:15 PM EST
The new pictures of Lucas were taken last Sunday when our families and some friends came over to celebrate Lucas's PopPop's 83rd birthday. They all drove from Pennsylvania to our house and having his cousins here and all of the commotion made him happy. It was great to see him in such good spirits for the first time in a while.
Lucas continues to have very restless days and nights but a little better with his bowels and urinating. Mom has determined when we give him valium, he initially settles down, however, later he is restless again as it weekens his bladder muscles and he has problems urinating. He's had a few days of retching and gagging and we're venting his G-tube often. If he has a bad night, we'll keep him home from school, because if we get a call from the nurse, we have no means to get him home from school on our own. (He has had bouts of crying in school and there's not much they can do there except to give him valium.) That's our problem right now until our new van arrives. Unfortunately, it is still here in NJ and we're not getting any answers as to when it will be sent to Indiana. Lucas's skin has been less flakier and his itching is not as much. He is still getting physical therapy at home and twice a week at school. No planned visits for a few weeks to Hackensack UMC at this time. We think the last visit where we lowered the Baclofen was a good move. We have been doing more Occupational Therapy at home with him and just trying to keep his mind working.
On many nights, we let Abby fall asleep in Lucas's room. They watch cartoons together and we encourage her to spend as much time with Lucas. We thank everyone for the messages and emails and your continued thinking of Lucas. We continue to receive encouraging messages from our friends from RMH in Minneapolis. There are three new families who have children with MLD in addition to the Trimper children and Maddigan. Please keep them in your prayers. Thank you for thinking of us and giving us strength through your words of wisdom. Godspeed!
Tuesday, February 10, 2004 11:15 PM EST
Last Wednesday, we took Lucas to the Urologist, locally. It was just a consult to discuss urinating problems. He is not exactly sure what is causing Lucas's problems, but he was not ruling out that the Baclofen dose could definitely be contributing to it. We told him that we have straight cathed Lucas around 6 times and no urine. He suggested a different sized catheter to use and they're on order. We scheduled his urinary ultrasounds at Robert Woods Johnson Hospital in early March. Since last week, Lucas has been sluggish and restless. The Protopic cream has been working, although he still cuts himself and bleeds from the itching. For the last 3 days, he has had fevers and that is why we've kept him home from school. Last Friday was his worst day at school. The nurse called us and we could hear him crying. We told her to give him Valium on 2 occasions. We had returned the van on Thursday and had no means to pick him up asap. They said he managed to get through the day. We did take Lucas for a 30 minute stroll today as the temps were mild.
When Lucas came home on Friday, Mom noticed water in our basement. The thick layer of ice, with 8 inches of snow on top with 2 inches of heavy rain on top of that caused some runoff in our back yard to enter the basement. We spent Friday and Saturday cleaning up and throwing out junk. It wasn't a total mess as it encouraged us to clean out and pack as much as we could in Rubbermaids. It seems like the trends of our weekly updates are to report that Lucas isn't doing great and some other problem hits us. We spent so much time getting settled in to our house, we couldn't get to addressing the back yard. When Lucas isn't himself and not feeling good, it darkens everything else and just compounds other situations.
It has been 2 1/2 weeks since we bought Lucas's van and we received a call today that it is still on the dealers lot. We have been paying insurance and have a car payment coming up and the conversion shop in Indiana called to say they can't get a trucking firm to get the van out to them. We thought it was there and already being worked on. After losing our other van, we were praying that we would get our new van sooner, but it doesn't look that way. With the help of a close family friend, we atleast found out some good news. The fund that we were looking to for assistance with the van purchase apparently didn't give us accurate information 3 weeks ago. They informed us that we probably wouldn't receive any help towards the van until we first utilized all of Lucas's fundraiser money. Her research located the law that states fundraisers held by other parties and any gifts are not included which is contrary to what they told us. We are going forward with the application for help. Some people have asked that after explaining our situation, how could they give you incorrect information? We don't know why, but when you become attuned to other people's plights in reaching out for assistance, you soon learn real fast that it is not easy and a very frustrating, time consuming ordeal.
Taking care of Lucas each day, jockying his medications and seeing him struggle and deal with pain is very difficult. He has had outbursts of yelling in pain during some of Dad's appointments, but thankfully the people are very considerate and understanding. Many respect our dedication to be home fulltime caring for Lucas and have stated we're just doing what we have to do for our kids. We just want him to be comfortable and we haven't been able to do that. Each day of Lucas's life is filled with spasms, urinary pains, constipation and itching from the GVHD. Some of his teeth are loose from his grinding. He has rashes on his feet and ankles and sometimes his feet feel very cold. He knows when we're eating and it stinks knowing your child is around the corner hearing you. What does he think? We don't know if he is depressed at this point with his condition. We asked Dr. Thompson if he thought some kind of anti-depressant would help and he advised us not until Lucas is off some of the meds. We have to hang on and maybe getting the van and some nice weather to get outside more often will help Lucas. You still have to find humor and remain an eternal optimist that the next day will be better. Godspeed!
Wednesday, February 4, 2004 10:19 PM EST
We wanted to wait until today's hospital visit to update on Lucas.
The last several days have been long and at times very frustrating. Since our last update, Lucas has had only 2 small bowel movements even after several laxatives and stool softeners. He has also had a major problem urinating. Mom has catheterized him several times and we have been unable to get him to go. He has gone on a few occassions, but not enough. This is causing him severe discomfort and spasms. We have had to use the valium each day. Each night has been long and we have been sleeping with him to wake up immediately when he begins moaning and yelling in pain. His GVHD has gotten much worse and he is itching it and this has made him even more unsettled. He has scratched his skin and caused bleeding. The flakes of skin and scalp are everywhere. Mr. Dengler came last night to give Lucas his bi-weekly crew cut and we could see where he has been scratching and it looks very dry and sore. Since he started the new drug, Cellcept, for the GVHD, things have worsend along with the increased dosage of his Baclofen Pump.
This leads us to our BMT and Neurology visit at Hackensack today. Unfortunately, Lucas's medications complicate matters with MLD. The increased Baclofen has obviously contributed to his urinary and bowel problems. Dr. Thompson agrees with us that the last time we upped the Baclofen, that was probably too much to handle for his urinary system. It has made it very weak. So today, we lowered the dosage with the warning that Lucas may have withdrawals similar to the time in the hospital after they took out the pump. We all hope this brings back some feeling for him down there. They do not want a 24 hour catheter in him because it will cause the muscles to close down altogether and stop working. After that visit, we asked a woman, for directions over to the Don Imus Pediatric wing for Lucas's BMT visit with Dr. Gillio. We normally go outside and wanted a shortcut. She turned out to be a hospital director and took us on a short cut. Mom told her parking is a problem, etc., and she gaves us her card and the next visit we're to call her and we can park in a reserved spot by shipping/receiving. Parking is a pain each time we go, so that helps.
Dr. Gillio walked in after Lucas had blood drawn. He was not at all happy with how Lucas looked. He does not like the drug Cellcept for fighting GVHD. He said in one respect, the GVHD is showing that Lucas is 100% engrafted and that in due time with Lucas's system, the GVHD will pass. But he knows Lucas is extremely uncomfortable and he took Mom's suggestion that we must start using a cream. He agreed with using Protopic cream and that we should still give Lucas the Cellcept for 7 more days. If nothing changes, we're to call him and see where we go from there. He also, is not happy with giving Lucas more prednisone, since neurologically it is more damaging, but unfortunately, there aren't many options. We were happy with todays' visits, because both doctors did something and gave us a new direction. We must admit, they listen to us and discuss it with us and make a decision. We like decision makers and dislike those who pass the buck. We conveyed to both doctors that Lucas hasn't really had a great day since the Baclofen pump was put in back in October. There haven't been any real good days for Lucas and somehow he mixes the crying and pain with laughing. Most nights we're up several times with him. Each time today when the nurses and doctors got near him, he reached with his right hand and grab their hand. He really isn't moving his left side again.
On the van front, we have several friends working hard to help us gain some funding from the state for Lucas's van. Our other van is totaled and Dad's aches and pains are subsiding. We are keeping Abby busy with playdates, Brownies and Ballet. We had hopes of getting Lucas to a local college basketball game, but it doesn't look good. Tomorrow, we have a visit with the Urologist and to plan his ultrasounds in New Brunswick, NJ. Our friends the Kelly's have loaned us their van for today's visit to Hackensack and for tomorrow. We hope our new van arrives earlier than expected. We still often think about our RMH friends & families from Minneapolis and really wish we could write more. Caring for Lucas each day and night and with Dad's busy season here leaves us no time. It's been a few years since our family has had some time off. Stay positive and strong Lynne L. Godspeed!
Tuesday, January 27, 2004 3:56 PM CST
For all those who have made promises in the past to do something when "Hell Freezes Over," if you look outside your window it looks like everything is frozen over. The weather here is miserable. Lucas has had 3 days of school cancelled including tomorrow. He has been doing better with school overall. Last weekend was a very difficult weekend for him. We were both up Saturday night with him right to sunrise with him retching and gagging. We were venting him every 15 minutes and it got to a point where we just sat down with the 60ml syringe waiting. Since Lucas has always had reflux, they think the valium we gave him to calm him Saturday triggered the reflux. The prilosec we give him didn't seem to help. We switched Sunday to pervacid and unfortunately the time release pellets got stuck in his G-Tube valve. He seamed to calm down on Sunday night. On Monday we introduced a new $400 medicine called MMF/cellcept to fight the GVHD. This is hopefully less damaging to him neurologically than the other medicine. As of today, he is doing OK and the weather held off enough for his ride home from school.
Two other notes, it is not looking very good right now for any reimbursement for Lucas's handicap van from the State. Another bureacratic loophole has come up that this fund does not tell you about until the very end. Unless an alternative is thought of, the State has said that we must first use all fundraising money that is held by the soccer club for the van before they'll pay anything. The intention of the funds was to pay for Lucas's ongoing medical bills, not a $45,000 van that we desperately need and our hope was that we could stretch the funds out for at least 3 years of bills. As with other lessons we have learned, being fair, honest and ethical with agencies, etc. as in our case has led to getting nothing for Lucas. Many ideas have surfaced, but we'd rather get nothing, than bring ourselves down to their level.
On that note, we signed all of the van papers on Friday, and came home to the phone call from the state. We were very disappointed to say the least. On Monday evening, Dad was driving home from basketball practice with our friends two children in the back. One block before their house, as he was taking his left, a car sped around an oncoming car on the right shoulder/curb who was also taking a left and hit the our van. Fortunately, the boys were OK and just shaken, but they're tough kids. Dad is a little stiff and sore right now. Lucas has taught us how to be strong and for his sake we suck it up and move on. This is New Jersey, the highest auto premiums for a reason. The van is probably totaled and after all of our phone calls today we called the dealer and asked if they could speed up the new van sooner than the 5 weeks. The main thing is that the boys and everyone are OK.
We have learned to try and make humor out of crappy situations. Figuring we were turning in the leased van in about 5 weeks, we don't have to worry about explaining the small dents from the falling down branches in our driveway. That's also one less car to scrape ice off of said Mom. We are using Lucas's self-inflating fart cushion more. Lucas as usual smiled when Mom told him. The disease as we have said before has somehow brought out the happy side of his brain even in not so funny situations. It has been 30 minutes to write this update, and it sure looks like hell is freezing over outside. Godspeed!
Thursday, January 22, 2004 10:25 PM CST
The daily grind of charting Lucas's urine and bowel movements and watching for rashes continues. Last week was his first full week back to school. After a tough first 3 days of frustrations, he ended on Friday doing better and continues to do well this week. He was still very stiff on his left side and we started using more valium. Dr. Thompson had Lucas come back to Hackensack on Monday and he increased his Baclofen Pump medication again. We have seen Lucas the last few days appear less stiffer, but at the same time a little too relaxed. Not sure if the increased medication is now starting to relax his body too much. He now gets physcial therapy in school and he still has therapy at home.
His cold and congestion have gone. He is done with his antibiotics. Lucas takes prilosec daily to combat the side effects of the prednisone and cyclosporine. He is definitely in better spirits than the last few weeks. The school days are long and tiring, but when he comes home we keep him in his wheelchair for another few hours and to watch cartoons with Abby. The last few days of school we found a sticker and some brown paper in his mouth. He apparently took a bite out of the class project and kept it in his mouth until he came home. Last weekend we took him to the mall as we ate at the food court. It is roomy, bright and open. We decided to walk through the mall and Lucas appeared happy and excited with the new sites and sounds. It was great to get him out.
Today we finalized the purchase of our new Rear Entry Minivan. We had to purchase the Caravan from our dealer and have another shop work up the conversion details. Overall, after seeing how the accessibility works, we became excited and anxious to finally do it. It is such a relief to know that in 8 weeks we will no longer be squezzing Lucas into the van, dismantling and lifting his wheetchair into the back and sitting with the driver seat pushed up. We simply open up the back hatch, pull down the ramp and push him right into the van. There is a special EZ lock that once attached to the wheelchair, just locks right into the van floor. No belts or hooks to tie down. The side entry vans and conversion vans are more widely available, but with Lucas's wheelchair angled so much and so long, it was not an option. The rear entry was cheaper and we won't have to use the handicap parking. In 11 months, we have only parked in a handicap spot at Hackensack once. This van gives us more options. We have looked into several social programs and assistance for Lucas this past year and he/we haven't been eligible for anything. In NJ, a program called Childrens Catestrophic Illness Fund helps severely disabled kids under 18 with such transportation expenses. We're now completing all of the paperwork and everything that goes with it to submit to this fund. We hope to receive reimbursement for most of the cost, but it could take at least 6 months.
We know many people ask and wonder how come Lucas hasn't received any type of assistance with medical bills, etc. from any type of government agency or under 18 program. In NJ, from what we have found out this year, for Lucas's situation right now he doesn't qualify for any programs. The Catestrophic Fund only comes into the picture because the van is our expense and we hope we do qualify for some reimbursement. To date, fundraising has paid the deductibles, diapers, co payments and noncovered physical therapies and equipment. Being self employed, you take out the health insurance you can afford and cut corners. We're just grateful that we have insurance. We have no prescription plan and carry high deductibles to keep the premiums down. Having our business at home and being here for Lucas and Abby 7 days a week and not missing a moment in their lives is one of the blessings in this whole ordeal. Mom and Dad see both Lucas and Abby off to school and we're here when they come home. We count our blessings that we live in a generous, caring school district that has given Lucas the unrestricted opportunity to continue with such a fine school as Schroth. Our family and friends remember the decisions we made a few years ago to make the sacrifices to help Lucas during the months before his diagnosis, and we're now able to reflect and thank God that he guided us to focus on Lucas's care. Godspeed!
Thursday, January 15, 2004 11:25 AM CST
Since Lucas's difficult visit to Hackensack, the fever managed to subside and lessen through last weekend. He has not been comfortable this whole time and it is very difficult to pinpoint why he is getting more spasms and restlessness. It seems before he had the baclofen pump put in, the heavy oral doses of valium and baclofen made Lucas more subdued and not as alert. The hope was that the baclofen pump would solve those concerns, however, there have been other complications. Lucas is not as stiff and is moving in bed and his wheelchair more. The thought is that the increased baclofen dosage may be causing him to be having urinary problems and weakening the muscles there. We were supposed to go to Robert Woods Johnson Hospital for a series of urinary ultrasounds, but they are tentatively on hold. We were supposed to cut out the valium all together, but we have been given the OK to give him some as needed. The as needed has been more often than we had expected.
His restlessness also comes with him screaming and yelling. He is still on the prednisone and cyclosporine alternating days, but a typical day now for Lucas is not relaxing for any of us, especially for Lucas. It is upsetting seeing him struggle each day and we give our best shot to come up with stupid, silly satire and stories to get him to laugh. We decided last Sunday to have him start going back to school on Monday with the idea that maybe the stimulation there would help. He has done so so, with each of the last 3 days having moments of crying and being upset. The school staff and some of the children were happy to see Lucas back. We think it is still the best thing for him for right now. This time around it was extremely difficult taking him to school and saying goodbye until 3:30. It is a 360 degree difference than when we dropped Lucas and Abby off for preschool and kindergarten. We talk about the separation anxiety back in those days compared to seeing him off to school now. When you care 24 hours a day and night for your 9 year-old child and he is out of your care for 7 hours, it is very very difficult. Even much more difficult now than back when he started in September.
Things quite frankly have been a little less stressful now than when Cindy Lou was here. We still wish that she had worked out for our family. Abby is doing fine in school and with ballet. She continues to talk to us about Lucas getting better. Today she wanted Lucas to go out into the snow and play like they used to. Godspeed!
Wednesday, January 7, 2004 4:41 PM CST
Yesterday, we took Lucas back to Hackensack UMC. Dr. Thompson was happy with his spasticity and felt Lucas's leftside is showing some improvement, but not yet to the point he would consider successful. He isn't sure if or when that day may even come. The BMT nurses took the normal bloodwork and also they catheterized Lucas for another urine sample. They were cautious to avoid any further bacteria. It took several minutes and after everyone relaxed, all of sudden Lucas let go with a large blast and got both nurses wet and filled the cut up to the rim. We took Lucas between appointments for chest Xrays. We then came back to the BMT clinic for the doctors consult. As we were waiting the nurses came in with grim looks. They informed us that the lab had dropped Lucas's urine sample and that the doctors did not want us leaving until they got another one. They attempted 4 catheterizations with different sizes and Lucas was still unable to go. He did not cry and only felt discomfort as they pushed it deeper into his bladder. We then asked the BMT nurse coordinator if someone could check his ears. Sure enough, she felt there was also an infection. Both Drs. Brochstein and Gillio looked and confirmed an ear infection. Dr. Brochstein had originally given Lucas a script for Zythromax antibiotic, but after conveying to us his disgust with the lab and the fact that Lucas had to go through 4 procedures, he changed the prescription to Augmentin antibiotic and said that they will assume he has the urinary infection and that this will take care of both infections. Our visit turned out to be 5 hours. The chest Xray came back negative and confirmed that his lungs were fine, no signs of pneumonia. Dr. Brochstein also wants to keep Lucas on the alternating days of prednisone and cyclosporine (CSA). He expalined that this may be the course for several months and that his GVHD/rashes looked much better. He was going to call Dr. Krivit this week and discuss Lucas's treatment, condition and planned medicine course. The only thing he can't confirm to us is if the enzyme is still in the central nervous system. Basically, Dr. Wengers test for the enzyme was for one thing, but Dr. Brochstein said we still can't know for sure without a surgical procedure on Lucas's brain.
Right now Lucas is still running a fever and has severe congestion. We suction his nose and mouth often. He is sitting up better and is more comfortable sitting up. He had PT today and if he is doing better by Saturday and the fever has gone, we can probably bring him back to school next Monday. If the fever doesn't go by this weekend, we must take him back to Hackensack Monday moring. The staff at Hackensack know Lucas thoroughly. They know how his port gives blood, how many infections he's had, etc. They've conveyed their concern about how much more they want him to go through. We want his laughter to come back and have him able to sleep or atleast only wake up 1 or 2 times a night.
On one last note, we may not have exactly been telling every detail on Cindy Lou. In some respects she has been good for Lucas, but she has gotten worst each day with settling into our household. She has bitten Abby 3 times and once came from under Lucas's bed and bit Dad. She doesn't like the leash and doesn't like walks. She has also baptised our carpets and if Mom doesn't take her into the bathroom, she won't go in on her own. We conveyed to the Make-a-Wish staff the problems we have had and the fact that she growls at everyone except Mom. They agreed that it is not working out and that she probably misses her old home. We tried our best and even tried to spoil her to win her over. They are coming tomorrow to take her back to the breeder. Some local trainers are not surprised with her personality since she is 14 months old and was used to the old home. Abby also told Mom that she wished Cindy Lou was friendlier and understands why she must go home. No immediate plans to replace her right now.
Thank you again for writing Lucas and also to all of the family and friends who continue to send donations to help with Lucas's expenses. Godspeed!
Sunday, January 4, 2004 3:55 PM CST
HAPPY NEW YEAR!
Since last weekend, Lucas developed congestion and a hacking cough. He also has another urinary tract infection. We took him back to Hackensack last Tuesday to have the neurosurgeon raise his baclofen dosage in the pump and to have his blood drawn. They also looked at his rashes and were concerned that they are not going away as well as they should on his medication. He has had fevers each day and night (100-102) and we have been combating it with a regiment of alternating Motrin and Tylenol. It won't go away. He has not been comfortable this past week and has been up every night for a few hours. We check on him throughout the night 3-4 times. The only good thing about getting up often is that it allows us to try and get Cindy Lu to go to the bathroom. Lucas has been more comfortable sitting up in his wheelchair today as the congestion doesn't bother him as much, but he can only sit up so long as he begins to drop his head and just can't keep it up.
He hasn't been very happy this past week. We are still shooting for this Wednesday for him to start school back at Schroth. They are looking forward to having him back. He is less stiffer than when he started school in September, however, he is not as alert as back then. We feel he has had some regression with the disease over the last 3 months with all of the infections and heavy doses of medications. The days are still long and difficult, but we continue to take it one day at a time. Abby has been doing OK. She talks about Lucas and asks when he will go back to the old Lucas. Cindy Lu is still getting used to us and her new environment. Lucas enjoys petting her when we put her up on his bed. She stays underneath Lucas's bed most of the time. Although she is only 7 pounds, she's a good little watch dog as she barks everytime someone knocks on the door, which is good.
Lucas has another visit at Hackensack this Tuesday. At Hackensack UMC, a few months ago, Lucas's music therapist started a chain with different beads for each surgery, chemo, catheter, etc. Lucas is halfway through his second chain. We ponder everything that has happened this past 15 months and he is understandably tired of visiting the hospital and being examined, but he continues to take it. He has earned the right to cry and be upset. We have learned from Lucas to be patient and less concerned about petty, irrelevant things. Although he's about 65 pounds, we still love holding him and making him feel warm. Our outlook for 2004 is still the same. One day at a time and live each day to its fullest without regret! Godspeed!
Monday, December 29, 2003 9:31 PM EST
We hope everyone had a great Holiday!
After our last update, Lucas was starting to gag/choke much more, he was becoming very restless and he spiked a 102+ fever on Christmas Day. Every night Mom would tend to him 2-3 times with his gaging/choking. We called Hackensack first thing Friday morning. Dr. Fried did not want to see us drive another 3 hour round trip so he advised us to see Lucas's local pediatrician. He examined Lucas thoroughly and suspected possibly a stomach bug and that Lucas had some congestion. We put him on Pedialyte and started giving him Tylenol. The fevers have come and gone and the rashes have resurfaced. With the warmer weather, we had Lucas outside a few days and it was very nice to get him out of the house. Today with family down to visit, he was very quiet and didn't show any emotion. He sat still, didn't laugh and was just not feeling himself. His incision looks OK, however, tomorrow on Tuesday he has him BMT visit at Hackensack and we'll discuss the issues there. He has just been struggling each day since the Baclofen pump has been put in. There's nothing to say that he has bad days because of common everyday bugs or colds and that could explain a lot of things, but he just can't seem to snap this sluggishness. We keep waiting for him to bounce back and get stronger, but the good days are quickly eliminated with the bad days. Godspeed!
Wednesday, December 24, 2003 5:25 PM EST
MERRY CHRISTMAS AND HAPPY CHANUKAH!
We'd like to thank everyone for sending Holiday greetings, emails and postings to Lucas and our family. We haven't gotten any cards out again this year, but we want everyone to know how much we appreciate your taking time write us.
With the holidays here, Mom and Dad have reflected on what the last 15 months have been like. Many ups and downs with Lucas, but the one thing that stands out has been the generosity and caring by so many people and the opportunity to meet so many new people and share Lucas's story with them. Words cannot describe what it has meant to us to have so many people help Lucas and our family. We cannot imagine what life would had been like for us if we had to go through this ordeal emotionally and financially alone.
Over last weekend, Lucas was uneasy and in discomfort. We were very concerned about his back incision which is slow to heal. We called our family friend Dr. Eric Wurmser to come see Lucas Sunday night. He is a surgeon and Wound Care specialist. He felt that it wasn't infected and was only superficial, but that before he does anything we should contact our Neurosurgeon at Hackensack UMC. Dr. Fried, the head of the department,wanted to see Lucas immediately Monday morning. He explained to Mom that with everything Lucas has been through, they want to be very cautious. We were told to pack our bags as he might need Xrays and possibly surgery. They were concerned that the catheter connected to his spinal cord may have come out and it could be leaking Baclofen. He grabbed and pinched around the incision and nothing came oozing out like last time. He said the incision is a little raw and that he agreed with Dr. Wurmser. He also feels Lucas is still too stiff. He told us to keep Lucas on his side as much as possible and to wait until our BMT visit next week for them to make a decision about raising the Baclofen medication. Each day for Lucas has it's comfortable times and restless times. We had hoped for all restlessness to go away, but no one can be sure what MLD will do. Right now Lucas and Abby are waiting for our town firetruck to come by with Santa with their presents and they are very excited.
We took Cindy Lou to our friend Dr. Trotter at Red Bank Vet. She is healthy except for an ear infection. He gave us the ear drops and took care of the bill. Cindy Lou enjoys sitting under Lucas's bed and wheelchair. Lucas enjoys seeing her come into his room and watching Abby chase her. She is still getting used to Dad and Abby, but she has been a very happy addition and seeing the kids happy with her is priceless.
We would finally like to thank all of the Ronald McDonald House families and friends who have constantly written words of support and encouragement. We may not always find the time to contact everyone, but please know how much your love and friendship has meant to our family this past year. We pray for all of you. Godspeed!
Thursday, December 18, 2003 11:20 PM EST
More pictures of Cindy-Lou now in 'view photos'
Cindy-Lou is now part of our family. (We decided to keep her original name instead of Yugi.) Mom was driven out to Long Island this morning with 2 volunteers from the Make-a-wish Foundation. They located our little Cindy-Lou and they were very excited with Mom to bring her in the house for Lucas. He was so happy as was Abby. They also provided us with supplies and food to take care of her. She sat on Lucas's lap for a while and he actually stroked her back a few times. She was a little nervous, but she settled in real fast. She is exactly what we had hoped for Lucas and it was all made possible from the efforts and generosity of the Make-a-Wish Foundation.
The entire last weekend was a restless and painfull one for Lucas. We could not comfort him and he had cried more than we had seen in some time. We couldn't be sure if the pump was working efficiently so we took him back up to Hackensack UMC Monday morning. Drs. Mazzola and Thompson examined him and looked at his incisions. They said the Baclofen Pump was working fine and he could be having frustrations and mood swings due to the Prednisone or something else. His stiffness appeared to be getting better and we have to just give it time. Dr. Krivit received Lucas's enzyme test from Philadelphia and he called to inform us that everything still looks good. That was Great News! Dr. Krivit was not very thrilled with the dosage of Prednisone Lucas is now receiving to eliminate the Graph vs Host Disease. He said to much of it at this stage for Lucas could progress the disease. We shared his concerns with the BMT unit in Hackensack and they have told us to taper down the dosage. His nose and scalp still bother him as he is constantly picking at them.
Lucas has not been napping since he's been home and we have noticed he is not comfortable laying in bed. We have had him in his wheelchair most of the day. He has received daily physical therapies and we also do both PT and OT each day with him. His bowel movements and urination have been adequate since he's been home, but we still keep a close eye on it. Abby has been doing OK and keeping Lucas laughing. She was chasing Cindy-Lou tonight and having fun.
Another milestone for Lucas: One year ago tomorrow, he received his stem cell transplant. Finally, please have a safe and happy Hanukkah and a Merry Christmas. Godspeed!
Saturday, December 13, 2003 11:20 PM EST
On Thursday morning, Lucas was given his last antibiotic and his dressings were changed. He was discharged and we came home around 2:00 in the afternoon. Mom learned how to do his dressings/bandages and foley catheter. We left with a new set of daily medications. Lucas was excited to be home and especially to see Abby. Abby didn't waste any time entertaining Lucas and getting things back to normal. We haven't seen any noticeable improvement in the GVHD rashes so far and we have not gotten Dr. Wenger's results back yet concerning the enzyme level.
Lucas settled in to his old room real fast, but we started to see him gradually get restless and have bouts of crying starting Friday. He has been urinating regularly, so no catherizations yet, however, he had gone about 4 days without a bowel movement. We have been giving him the normal laxatives and his Resource w/fiber. About 7:00 this evening, he finally went and proceeded to go another few times. However, he was still restless and was not as loose as he was on Thursday. The pump is supposed to make a beeping noise if something stops working with it, but no noise. He is picking his right leg up higher and moving his left leg up a few inches in bed. His left arm is moving a little better and we anticipate and hope everything gets looser and the stiffness subsides. His feet are still severely clubbed. He is still only 10 days post surgery, so we have to be patient and give it a chance to fully kick in. He is still drooling considerably and no one can tell if it will ever slow down. You see, Lucas drools everytime he laughs, which is a lot each day and even though he is in pain and restless, we keep after him with jokes and pranks to get his mind off it. Sometimes, nothing works.
On a lighter note, we celebrate Chanukah and Christmas in our family. We took Lucas out this afternoon to purchase a Christmas tree at our local Little Silver Fire Department. (Compared to Minnesota, the temperature is not as cold, but when the winds come in off the ocean, it is a wetter cold that goes right through you.) We are determined to get him outside and still do things together as a family. Lucas feels the cold much easier than we do and we bundled him up. Dad carried him through the trees and Abby got him to laugh a few times. Mom and Abby picked out the tree with the help of Al Bennett who worked on our home. They would not accept our payment and said it was a gift from the Fire Department and First Aid Department to Lucas and Abby. They have done so much for us this past year and again we thank them for their generosity. It is the first time since 2001 that we have put up our tree and we truly appreciate these moments together as family.
Thank you to everyone who checks in on Lucas and who continues to pray for him and our RMH friends and families.
Godspeed!
Wednesday, December 10, 2003 10:13 PM EST
Each day we have seen improvement in Lucas's awareness and stiffness. The pump is already working. He's resting more comfortably and the incisions are looking fine. They are really taking precautions with Lucas's dressings and checking often that they are healing. It was a such a relief to see him start to smile and laugh as Monday was wearing down. On Monday we picked up his wheel chair and it weighs much less with the new foot boxes. The PT came in and we got Lucas into his chair where he proceeded to sit for 2 1/4 hours before he could no longer keep his head up. For each of the last 2 days he spent about the same time in his chair along side his bed. The drooling is still very constant and we continually change his gown and towels under his chin.
At midnight last night, the nurses came in and removed his Foley Catheter from him and advised that he must urinate by 6:00 am. They came back at 5:45 am they were about to straight catheterize him when he began urinating at the nurse. Aside from her quickly placing the diaper over him, she and Dad were happy that he got through the 1st phase. They are teaching us again how to catheterize him as the doctors want us to check him every 6 hours to make sure he has gone. This could be part Lucas's daily routine for a while. The biopsies came back positive for GVHD, but according to Dr. Brochstein, it is very treatable and nothing to be alarmed at right now. He put Lucas on a regiment of alternating days with increased CSA and prednisone. Two weeks ago we were hoping we could cut out these medications, instead we're practically doubling the dosage. The doctors do not want us to apply anymore creams, as they want to see the medicines clear it up and they'll want us to keep a close eye on it.
The blood samples were drawn on Monday and shipped next day to Dr. Wenger in Philadelphia for him to test (per Dr. Krivit's request) if he is still generating the enzyme that the transplant was intended to develop. As we had said previously, the disease progression in Lucas over this past year was not stopped by the transplant for him physically, but hopefully mentally, we have been able to slow down the deterioration there. In a strange way, watching Lucas each day we get this feeling that he is mentally stronger and alert. He reaches with his right hand to grab your hand and if you get close enough he can put his right arm over your neck and pull you in for a hug. We lean over and he gives kisses. He's again laughing at silly things and aware of his surroundings. It's like he is comforting us and everyone else who gets to know him. It is difficult putting into words exactly what we mean, but it's like he wants to say "it's alright, I know whats going on." The nurses and therapists, many who have seen him since March, have in a round about way conveyed that feeling to us too.
If Lucas's last antibiotic is at 10:00 am on Thursday, we'll be able to bring him home the same day. It the last dose is not until 4:00, he'll have to stay one more night and then he can come home Friday. Being on the BMT/Oncology floor is more relaxing for everyone. We have a phone and a pull out bed to be there with him. Lucas was very alert yesterday in the morning when Santa Claus came by, also when some NJ Devils and some retired NY Giants came by for a visit. We have often conveyed to Lucas that we know he enjoyed sports and that he tried so hard even with his disabilities. We're a sports family and although he struggled, he played hard and showed excellent team spirit. Thank you for checking in on Lucas. Godspeed!
Sunday, December 7, 2003 10:30 PM EST
Since Thursday, Lucas has been resting quietly and not showing much enthusiasm. He may have smiled a couple of times, but he isn't with it as much as he was the morning of his surgery. We have not gotten back the results from the biopsies taken for testing him for GVHD. Dr. Mazzola has stopped by each day except for today to check in on Lucas. She doesn't want anyone touching Lucas's dressings/bandages except for herself. The antibiotics once again, along with recovering from the surgery, plus the straight catheter helping him urinate are probably keeping Lucas down right now. He has just started feedings through his G-tube last night and he has been gagging/choking each time.
The Nor'easter that dumped 2 days worth of snow on us prevented Dad and Abby from getting up to see Lucas. Mom has been dealing with the snoring in the family room since Thursday night. Dad is going up on Monday to give Mom a 2 night rest. Mom is a little tired of 4 straight days of salad, but it still beats last year at this time in Minnesota of 3 consecutive days of Sloppy Joes. We are still on course to bring Lucas home on Friday and we are all anxious to be together as a family again. Abby is doing fine and enjoyed seeing the Nutcracker with Grandma today. Abby has once again adapted very well to all of the craziness our family has to deal with with Lucas in the hospital.
We were supposed to pick up the puppy this Wednesday, but that has to be cancelled. The main thing we can do for Lucas right now is to keep his spirits up and encourage him to be strong and hope our new addition "Yu-gi" perks him up. We are praying and hoping that this time around with the baclofen pump he'll be less stiffer and more alert. Cutting out the Valium and oral Baclofen in October for 9 days proved to us that he was more alert and moving his left arm for the first time since February. Thank you for checking in on Lucas. Godspeed!
Thursday, December 4, 2003 10:03 PM EST
We want to update everyone on Lucas's day.
It was a long, hard day for Lucas. He was is great spirits and watching cartoons in the Pre-Op Surgery room. Even up to the second Mom took him into surgery with the nurses he was not noticably upset or even restless.
The surgery took about 2 hours as Dr. Mazzola wanted to be extra sure with the sutchers and dressings. She came out to tell us that all went well and that Dr. Brochstein from the BMT unit came in and took his biopsies to analyze for Graph vs Host Disease. Where heard someone being wheeled out of the OR and crying and it was Lucas. He looked in pain and very weak. The PICU is only 100 feet down hall from the OR. He was all hooked and given morphine in his old room. He continued to cry, but he was not as restless. He looked very down and just simply sick of everything. Dr. Mazzola put him on 2 strong antibiotics to prevent any infections and wants him to stay in hospital for another 8 days until the course of antibiotics is completed. She does not want him going home until they are done, his port catheter is flushed and he is more coherent. He had some low grade temperatures tonight and had an X-ray done. Mom is staying the next few nights until the weather settles down and Dad can relieve her.
Godspeed!
Wednesday, December 3, 2003 8:48 PM CST
We're packing Lucas's bags and Mom is getting her suitcase together. We check Lucas in tomorrow at noon and he'll have the surgery between 1 and 2 pm. We were at Hackensack UMC for Lucas's pre admission bloodwork and paperwork on Tuesday. We then took him over to the BMT clinic for his monthly checkup. Both Drs. Gillio and Brochstein saw Lucas and the BMT nurse sat down with us to review his medications and future game plan. Dr. Gillio was concerned with Lucas's rashes and skin texture. He asked Dr. Brochstein to look at it and they concurred that it looks like cronic Graph vs Host Disease. Nothing to be immediately alarmed about, but tomorrow while Dr. Mazzola is putting in the Baclofen Pump, Dr. Brochstein had us sign more consents as he is going to jump in and take some biopsies from all of the areas of concern. Each incision will have to be sutchered. The next course of action for his medications will depend on the results of the biopsies. They told us for Lucas's situation right now, they have no plans of taking him off the Cyclosporine (CSA) for his stem cell transplant and he could be taking it for some time into the future. It isn't normal to still be taking CSA this far after transplant, but they told us they have had some patients in the past stay on it for a while. We must continue with his fungal med "diflucan" and they have told us to up his prednisone. Not the news we wanted to hear.
Tonight, we decided to get Lucas out into the cold and we took the kids to the mall to see "Elf." After Minnesota, 28 degrees is not very cold anymore, but it is for Lucas. During the movie, Lucas was extremely restless and very stiff. He yelped and screamed out noises during the movie as we consoled him. He laughed at several scenes and made it through the movie. Abby was very quiet and a good little girl. We decided to take a walk through the mall with the kids. Lucas's legs are very stiff and pointing straight out. We opted not to put his mask on and used our common sense to stay away from people. The mask normally gets people to look at Lucas, but tonight many people were looking anyway. Walking through the mall, he made noises and people would stop and look. Last year in Minnesota, we got used to the looks, etc. However, it doesn't bother us and we don't think it bothers Lucas. It's part of our life now and we've learned to ignore it. We wanted to get him out tonight and we don't hesitate taking him where people are because we want to keep things as normal as possible.
As tomorrow approaches, we are concerned and bothered that Lucas must go through another surgery. It is hopefully the best option for him right now, but it doesn't make it any easier comforting him when the Anesthesiologist comes into his room. We have to keep in perspective that everything we're doing now for Lucas is not going to cure MLD, but rather give us hope that at least we're slowing down any rapid deterioration of his mind and body. We also want to again ask Lucas's followers to mention in their prayers, all of our friends and families we met at RMH in Minneapolis. Godspeed!
Sunday, November 30, 2003 5:48 PM CST
NEW PICTURES!
Thank you for all of the postings and notes and we hope everyone had a great Thanksgiving.
We spent Thanksgiving in Pennsylvania with family and on Friday in South Jersey with family. Lucas had his longest car ride in over a year and going out to PA he was fine, but coming home he lasted about 45 minutes and began getting restless and was moaning. He doesn't seem to enjoy car rides as he just can't get relaxed. In any event, he enjoyed seeing everyone before going back into hospital on Thursday.
Last Monday, we took him locally to see a Pediatric Urologist per Dr. Mozzola's request and to discuss our concerns. He recommended a few ultrasound tests at Robert Woods Johnson Medical Center in New Brunswick where he performs these tests. He wants to scan and see how weak the muscles are in his abdomen area and mentioned that there is a possibility that we may have to straight catheterize him more often to urinate. We continue to give him fluids and monitor his system closely. We have some good creams and are constantly applying them to his skin and scalp.
On Tuesday, we go to Hackensack UMC for his surgical visit to sign all of the papers and have blood work done. We also have a visit with the BMT unit and will discuss stopping a few of his medications. On Thursday, we check Lucas into the PICU and he'll have his surgery later in the afternoon. He'll have to lie completely flat for 36 hours as we cannot elevate him at all. We're back to planning taking care of Abby over Lucas's hospital visit and keeping her busy. We are praying and hoping that the procedure goes well and that Lucas is not in too much pain. At this point, he is overall stiffer, tighter and still drooling. We go through countless shirts and cloths each day. Tonight, we gave him a bath (as opposed to sponge baths in bed) for the first time in 2 months. He gets cold very fast, but manages to get through it.
After Lucas comes home, Mom is going with the Make-a-wish representatives next week to Long Island to see "Cindi-Lu." She's a 1 year old Bichon and just talking about it to Lucas gets him excited. She was the runt of the litter and is and only will be 8 pounds instead of the normal 15-20 pounds. No one wanted her because she is too small to breed so it seems appropriate in our situation that she comes to live with us. She is potty trained and we're told she is great with kids. We are looking forward to her making Lucas and Abby laugh and bringing more excitement to our home.
One year ago tomorrow, we were in Minnesota and Lucas starting undergoing all of his tests in preparation for his stem cell transplant. We reflect on what has happened to him over this past year and how much he has truly battled this disease and yet continues to still break a smile and find the strength to cope with the pain and the fact that he has regressed so much. We have no idea what he is truly thinking right now and even if he is experiencing any kind of depression or sadness. One thing is however very clear, we continue to fill his day with love, laughter and goofiness. Godspeed!
Sunday, November 23, 2003 6:48 PM EST
See New Pictures in Album
Since last Monday, we have begun feeling that we have gotten into some type of routine with Lucas knowing that when he goes back into hospital December 4 for surgery, it will probably change again. His incisions are healing fine, he has not been gagging as much and he has been napping in the afternoons, however, we still have had to adjust his medications at times for his spasms. We can't figure out why some times he is still very restless and uneasy and experiencing spasms. We have stopped the overnight feedings and he has been sleeping better with no gagging. We have been mixing up his feedings with normal Resource and one a day with fiber. We have been running more water through him and his system has been flushing more consistently. He still has rashes and we stay right on top of them. He hasn't been in the bathtub in weeks as we still choose to wash him in bed. All other medications are still the same right now.
We called Dr. Krivit last week and he didn't have very much to say except that he wants another enzyme test to be done by Dr. Wenger in Philadelphia to see if he is still producing the enzyme. We'll get that done when he is in the hospital on December 4. Dr. Thompson also wants to do another MRI to see the status of the white matter in his brain. We are starting to digest another hospital stay for Lucas and another trip to the Operating Room. We are not looking forward to it. He is getting used to not being in the hospital and this is what we mean by getting into a routine. The hospital changes everything. We believe surgery for the baclofen pump is necessary right now and we hope he bounces back to where he was the 2-3 days before his body developed all of the infections earier this month.
With the warmer weather we have had the last few days, we have taken advantage of it and have gotten Lucas out for more walks. Since we had his wheelchair adjusted, it is easier getting him around and it handles small bumps better.
Today, all of us were invited to our temple, Monmouth Reform Temple and Mr. Levinsky, Principal of the Hebrew School and Rabbi Priesand along with all of the students and many parents were in attendance at the assembly to present Lucas with gifts, signed posters and banners and a donation. Lucas's 4th grade friends sat up front and his friend Isabel contacted the Chicago Cubs and they sent an official cap, stickers and cards. The concern and caring we felt from everyone this morning was very special and we were very humbled by everyones' efforts and compassion. As we were wheeling Lucas out, many of the students, were telling Lucas to be well and be brave.
We had a meeting with a few representatives from Make a Wish last week. We had promised Lucas when things settled down (which they still haven't)we would get him a dog of his own. Actually, we promised both Abby and Lucas, and since going on a trip does not look too likely right now, they are granting this wish and Lucas expressed a large smile when we told him. We had already picked a name months ago "Yu-Gi" for Yu-gi-oh, his favorite cartoon. We know it will be extra work, etc., but he has had visits from many dogs in the hospitals and at the Ronald McDonald House and each time he has perked up and gotten excited. We hope this new addition relaxes him more. He deserves this wish very much and Dad has agreed to clean up after Yu-gi. We'll do whatever it takes to make Lucas happy and content. We came to realize that our normal day is caring for Lucas each minute, keeping Abby busy and included, working and being so busy, we really don't get tired anymore. Our bodies and mental strength have reached a point where we feel that we have been through so much the last 2 years that our energy carries through each day and we don't complain about it. Our faiths have carried us right along and with so many people praying for Lucas and our family, we keep going. Godspeed!
Sunday, November 16, 2003 9:20 PM EST
We have seen Lucas each day gradually increase his awareness and movement of his right arm and right leg. His smile and ability to laugh at us and silly things has come back. We are planning to slowly start therapies at home with him tomorrow and attempt to use the techniques that we have learned.
As we had updated the other day, we met with Dr. Mazzola and Dr. Thompson on Monday and their recommendations are to get Lucas back into hospital and give it another try with the Baclofen Pump before Dr. Mazzola takes her maternity leave. They have scheduled OR time on December 4. We are not shooting for a certain amount of days for him to stay in hospital as we did the last time. Our projected 5 days turned into 22 days. They have promised to be as cautious as possible to avoid anymore infections from surgery. On Monday, Lucas had his stitches removed and his front incision looks fine, but we are still applying saline and peroxide to try and dry up his back incision. For the next surgery, they cannot put the pump in the same spot so they will be putting it on his left side. Lucas will now have scars from his chest down to below his belly button and from below his belly button out to both sides of his body. He has been flaring up a few rashes again on his face and we continue to take care of them as they stubbornly don't go away.
His bowel movements and urinating have been more regular and we have gone back to giving him a feeding of Resource with Fiber and Colace each night to make sure he goes. We have been running water through his G tube more often too. Our $1.50 each diapers are very good and don't leak, but we going through about 4-5 a day. We estimate about $2,500 a year for diapers. Another good note, Lucas's $11,000 wheelchair was approved and we await if we owe any balance. It took 7 months. His daily medications are now Baclofen, Valium, Fluconazol, Cyclosporine, Prilosec, Prednisone and Colace. We are hoping to lower these over the next month.
Today, Lucas received a special visit from members of Dad's Fillipino/American prayer group Servants of the Lord. They sang several prayers and said prayers over Lucas. Their sound and songs were so comforting, that Lucas fell asleep. Family and friends continue to stop by and visit Lucas and lift his and our spirits. We understand the difficulty many have remembering how Lucas was and seeing his condition now and their concern for him. Abby continues to be great medicine for Lucas and her singing and imitations crack him up. The days and nights are still long and tiring, but seeing Lucas more alert helps us carry on to the next day. We still have faith that God will give someone, somewhere the answers to figure out a way to reverse what Lucas has lost. You must not give up and we dream that somehow he can make it to our bedroom one morning to wake us up. Thank you for following Lucas's journey and continue to pray for our friends and families from RMH. Godspeed!
Sunday, November 9, 2003 8:14 PM CST
SAME UPDATE, JUST A QUICK NOTE: LUCAS IS SCHEDULED FOR SURGERY DECEMBER 4 AT HACKENSACK. DR. MAZZOLA DOES NOT WANT TO WAIT ANY LONGER AS HIS INCISIONS LOOKED GOOD. THE PUMP DOES NOT GO IN THE SAME PLACE AS IT WILL GO IN THE OTHER SIDE THIS TIME. HIS INFECTIONS ARE GONE, ALTHOUGH HIS BACK STILL HAS A LITTLE OOZING AND WE ARE MONITORING IT.
Steadily and slowly, Lucas has been becoming more alert and moving his arm. He has been giving shaky high fives and smiling more. We believe his body has adjusted to the antibiotics and gotten used to them. However, at 3:00 today, the home care nurse came by to deactivate the IV pump and stop the medication. She removed the needle from the catheter and flushed his line. He seemed a little upbeat to finally have the line stopped and it makes our lives a little easier moving him around and dressing/changing him. We hope over the next few days he doesn't have an adverse reaction to having his body adjust to not having these medications running through him. Since Friday morning, Lucas has seemed to have awaken from this fog and glary eyed state. He was laughing more and more at silly things. He had his normal 3 week buzz cut today and his scalp only had about 4 really dry spots. He had visits from family and friends and Abby's soccer team the last 3 days and that really perked him up. He is slowly holding his head up more and moving it, but he is overall very weak.
He is still no where near health wise and strength wise where he was 5 weeks ago. It may take some time regaining what he has lost. We have no immediate plans for any therapies right now, however, we are doing some minor movements with him. We are hoping he gets well enough to return to Schroth School in 3 weeks. His bowel movements and urinating have gotten more consistent and we haven't had to worry about them too much.
Tomorrow we go back to Hackensack UMD to have the stiches on his incisions removed and to have a consult with his doctors. We are planning to discuss the possibility of going back to surgery for the Baclofen Pump right after Christmas. His surgeon is pregnant and expecting in January. Our recent conversations have leaned towards admitting him the day after Christmas. We know the pump worked for Lucas, but putting him through surgery again is not an easy subject to talk about right now. We're just content at this point that he is not in any pain and that he is more alert.
In our family, we have always explained to the kids, especially Lucas, about the sacrifices people make to protect us, that they put their lives on the line for us showing courage, so that we can live free. Lucas' Pop and Uncle Cal have fought in War and they respect Lucas for how much he has fought this disease. We thank those from our families and the men and women of past and present for our freedom. Godspeed!
Tuesday, November 4, 2003 8:04 PM EST
We have been home for 6 days now and Lucas is still very tired and just not attentive. He rests in bed and has been sleeping much more than normal. He is not capable of having any therapies at this time and has no voluntary movement. We have had to monitor his urinating and bowel movements to make sure he continues to flush his system. We hope the antibiotics are eliminating all of the infections. We have had to lower his Baclofen as we believe it has been one of the contributing factors to his fatigue. He has been zoing out more and staring right through us. We run our hands in front of him to make sure it isn't a subtle seizure. It has been a long time since Lucas has been so sleepy and not with it. He is still on the IV pump for his antibiotics and that will stop on Sunday. We take him to Hackensack UMD on Monday to have his stiches taken out and for another examination.
On Sunday night, he hadn't urinated for at least 9 hours. We have to make sure he goes within an 8 hour window. We had tried over 2 hours putting his hand in warm water repeatedly in hopes it would help him go. When it appeared not to be working, we called Hackensack PICU. They told us to get him to the ER as soon as possible. No sooner than we get our friend Donna to come over at 11:00 pm to watch Abby, Lucas proceeds to finally go, and go all over the bed and floor. We were very relieved. Dad was packing Lucas's bag and getting the car ready when he went. We have decided to get some Foley Catheters and do it ourselves in the future. He has also been gagging and retching more frequently. We have had to vent his G tube several times a day. Even when he is sleeping, he will start gagging, whether during a nap or through the night.
We took Lucas out for Halloween and got him into his
Yu-gi-oh costume and went out with Abby and friends in our neighborhood. He hung in their for over 3 hours as all of the kids were entertaining him, but at the end he was exhausted. He is getting into his wheelchair a little better than last week. On Sunday, with the beautiful weather, we took Lucas to see his friends on the Peninsula Soccer Club play. He was just not with it that afternoon. We feel the last 3 weeks, 15 catheterizations, heavy medicines, 3 OR surgeries and a spinal tap in his room, took too much out of him. The laughs are much fewer and we hope when the antibiotics stop, he'll bounce back. Mom and Dad have spoken to Dr. Mazzola and we were told that the smaller Baclofen Pump may not be approved until later next year. We can't wait that long and it looks like we may be taking Lucas back to hospital after Christmas time to give it another try. The sooner the better. They have promised to take more precautions to avoid another staph infection.
We continue to take it one day at a time and praise and encourage Lucas at every given chance. We also let Abby know how much she has done for Lucas. Thank you for checking in on Lucas. Godspeed!
Friday, October 31, 2003 10:22 AM CST
Thank you again for writing Lucas and giving us so much encouragement.
We took Lucas home Wednesday afternoon. He wasn't very happy being moved around, but we think he is glad to be home. The home care nurse stopped by to show us once again the use of his IV monitor, etc. Mom is very comfortable hooking Lucas up and flushing the lines. Lucas is not the same as the day before we went into hospital. With his medications being increased, they are making him less attentive and more tired. He is napping during the day which he hasn't done in a while. Moving him is a little more difficult with his incisions and catheter being accessed. On Wednesday, the infectious disease doctor also confirmed that Lucas had a kidney infection on top of everything else. We feel his body has been battling all of these infections and that in due time he will feel stronger and be more with it. We are overall disappointed in that he spent 3 weeks in hospital and nothing was accomplished. We are planning after the holidays to give it a 2nd try with the pump. The few days it was in proved it does work for Lucas.
What little attentiveness and alertness Lucas has right now is all due to Abby. She has been her big brother's best medicine. The other day in school, she was late and we took her in the school. She saw Julie the social worker and went up and asked her that she wanted to see her today. She doesn't tell us what she talks about and we know it is helping. We are keeping Lucas home for the next 3 weeks and we'll see how he is doing and if he is fit to return to school. We can't put into words how much respect we have for our son and can honestly confess that we have our moments when his suffering can't be stopped. Life is put into perspective when your child is fighting for his life.
When in Minnesota, Max Trimper from Michigan had a BMT for Metachromatic Leukodystrophy 3 weeks after Lucas and now his younger sister Maddie and brother Sam who also have MLD are now at Duke going through their transplant. They are in our prayers and we want our friends to know they are doing OK and fighting along. We also take this time to mention that some of our other friends we met at RMH who continue to give us encouragement are also always in our thoughts and prayers. We hold a great amount of respect for your courage. Godspeed!
Tuesday, October 28, 2003 3:56 PM EST
Thank you for all of messages of support for Lucas.
Sunday morning, Lucas went into surgery for 1 hour to have the Baclofen Pump removed. Mom went in with him and when he saw the Blue Scrubs coming to get him, he began to get restless and uneasy. The surgeon flushed and clean his incisions and the entire area around the pump. No point in wasting time to figure how he got a staph infection, but these things do happen. He came out of surgery and was moaning in post op for 2 hours. We have no idea when they give him morphine if it is even working. He went back to PICU and slept off and on the rest of day.
The infectious disease doctor came to see Dad abd Lucas early Monday morning. Mom stayed home due to the inclement weather. He informed us that Lucas must stay on an IV infused antibiotic to prevent the Menengitis through November 10 and they switched him to Bactrum (G tube) for his other infection. He said we could come home Wednesday as long as Dr. Thompson agreed. The IV must be set up every six hours and it will take 20 minutes. The home care nurse will show us on Wednesday what we have to do and we'll go from there.
Lucas was moved from a private room to a double room on PICU Monday at 4:00. At 5:15 he began crying and spasming and shaking severely. They gave him his Baclofen and Valium and it did nothing. They called Dr. Thompson and upped his valium, nothing. They put him on morpine and a little more valium it didn't phase him. Lucas was in the worst pain and spasms since he was diagnosed. Dad sat with him and he could not be consoled. He still had a bag in his belly that was draining the Baclofen pump site. We didn't know what was wrong with him and since the physicians rely on us for that Dad was totally frustrated. We know they were doing everything possible. At 1:30 in the morning they gave him a greater dose of morphine through his IV and at 2:00 he had finally managed to calm down and fall a sleep. His heart rate reach 196. We suspected that maybe he was experiencing detoxification from the Baclofen Pump providing stronger consistent flow of medicine and now he went back to a dose every 5 hours. Like an alcoholic going cold turkey and trying to stop. This morning they said we were correct. The noise and commotion in the new room with the new patient only added to his stress. We know he hears people laughing, etc. and his nervous system and frustration level can't handle it. It needs to be quiet for him, especially with the severity of the pain he was in. Almost 9 hours of intense suffering for Lucas was the result. He began running his thumb in his nose and eyes and irritating them. He'd do it 20 times in a row with the same movement. Dad had to hold him down for several hours and he had to tape his fingers together to stop him from cutting himself. Dad sat in the chair by his bedside until 3:30 and dosed off when it had looked like the moans had stopped.
This morning he woke up still restless and very much out of it. He was transferred up to the BMT floor and given his own room. We aren't complaining about noise from people, etc., except that Lucas's condition and nervous system can't take excessive commotion. We sense the doctors are bothered that he went through 3 surgeries and lifethreatening infections and we're back to where we started 3 weeks ago. They did raise his baclofen dose to 200 mls from 120 and gave us more leaway to up it as needed. Back in February, Dr. Krivit also seemed very upset that the MLD had progressed so fast in Lucas and there was nothing anyone could do. We are anxious to bring him home tomorrow and be together again. Lucas has been in hospital almost 100 days this year. We'll keep him home for the next 3 weeks until his IV drip is done and enjoy our time with him. Godspeed!
Saturday, October 25, 2003 9:46 PM EST
The test results came back this afternoon.
Lucas has 2 infections. The E Coli Virus has shown up in his urinary tract and the cultures from Thursday's surgery also revealed that he has a staph infection in the incision on his back and in the fluid building up around the Baclofen Pump. The 2 antibiotics he is now taking will hopefully take care of the infections. Unfortunately, the Baclofen Pump must come out. Lucas has been scheduled for surgery tomorrow morning at 9:00 am. We know he must go through another surgery, but at least we believe they have isolated all of the problems and it appears the antibiotics should knock the infections out of him. They cannot allow the pump to remain in him so long as the risk of more serious infections could occur. It has been a rollercoaster ride the last few days for Lucas. There has been a lot of guess work in figuring out what was going on and what could happen. They are now certain that the pump must come out and that all of Lucas's problems with urinating was caused by the E Coli Virus. We were relieved when Lucas was taken off the Merepenam antibiotic the other day because seizures are the main side effects of the drug.
Mom is by Lucas's side tonight and Dad will be taking him into the OR tomorrow morning. Mom said Lucas kissed her on the cheek for the first time in days and that he is very tired from the heavy medications. We still lubricate his face, joints and body with medicated creams to stop the dryness and rashes. The doctors and nurses told Mom that these infections are extremely painful, but they said he really didn't complain or cry that much. They said he has been a very gutsy kid. Lucas is like many of the children we have met this past year. Incredibly brave kids.
We have decided that when he is released from Hackensack UMC, we are not going back to Childrens Specialized Hospital. Nothing against that facility, but we want Lucas home with us and with the help of our PT and OT friends, we'll pick up the slack at home. Putting him back in the hospital for Rehab after what he has been through the last 3 weeks and especially the last 1 1/2 years is too much. We believe Dr. Thompson concurs with our thoughts. Get Lucas back to school when he seems up to it and keep him home. We have no idea when Lucas can come home right now as he remains in PICU at Hackensack.
We want to again thank everyone for writing to Lucas, calling and helping with Abby. We know many of our RMH (Minnesota) friends and families have written and all of your words of encouragement mean so much to us. We pray for you and miss you. Godspeed!
Friday, October 24, 2003 9:28 PM CDT
We want to thank everyone for writing Lucas and checking in. It is greatly appreciated and we will try our best to keep you up to date. We have no computer port or phones in the PICU and have to wait until we come home.
Last night the infectious disease specialist came back with additional re-tested results. They had determined that the strain of bacteria was not the superbug strain and that we no longer had to wear gowns and gloves with Lucas. He immediately took Lucas off the very strongest antibiotic. However, the good news he gave us was followed by him telling us that Lucas still has the E Coli Bacteria and would categorize the infection just below the superbug strain of it. He then put Lucas on 2 antibiotics and I cannot remember their names, except that there is only one antibiotic stronger than these 2 and it is the Merepenam that he just took Lucas off of. It is still a very serious situation to monitor. After he left, Dr. Mazzola came in for her consult. She wanted to take Lucas immediately in for a 45 minute exploratory surgery, check the pump for any leakage and to take cultures from both of Lucas's incisions and the tubing for the Baclofen pump.
We took Lucas down to surgery and 2 hours later he came back. He was on morphine for a while and then on tylenol for pain and fevers. Through all of this his fever has been bouncing between 99 to 101. He is weak and just doesn't have the pep he had last Saturday. We do not get the results from the cultures until late tomorrow or Sunday. There is also fluid building on Lucas's stomach around the Baclofen Pump and Dr. Mazzola is concerned with that. She saw Lucas today and said she is very concerned about the infection, but atleast the fevers are not as high and the oozing from his back incision is not as much. As she put it, we can only wait and see what the tests show. I may not explain this properly, but she overall concerned that the infection may cause menengitis in Lucas's brain and that it could become very serious. It is not the same type of menengitis that we hear on the news. It sounds like it is a by-product that develops from the infection around the sphine and travels to the brain. When you are tired and hearing the doctor explain everything to you, hearing certain terms freezes you for a few seconds and you try to comprehend the rest of what they say. Basically, this infection where ever it is planning to go must be stopped very fast.
Lucas was very quiet today and at least he had a good bowel movement and urinated a few times and we don't have to see him cathetered for tonight. He is once again getting excellent care with the Hackensack staff and we appreciate how they care for Lucas. Godspeed!
Wednesday, October 22, 2003 10:46 PM EST
Mom received test results this evening from Dr. Thompson. Lucas was moved into isolation on the PICU. They have determined Lucas has somehow contracted what is called the Super Bug, resistant to antibiotics. It is "ESBL E Coli" and only one antibiotic can fight it, "Merepenam." Mom and Dad now have to where gowns, no masks in his room. Our bodies are strong enough to fight it off, Lucas's isn't that strong right now. Dr. Thompson has explained that since Lucas is still immuned suppressed, Lucas could not fight off the bacteria like we could have. He did say that the transplant/stem cell is working in that the high white cell count of 25,000 is his body trying to fight this off. Lucas is still spiking fevers and has had a few spasms. They will begin giving him Merepenam tonight. He is tired, but Mom said he smiled a few times as one of the nurses was joking around. He will be in isolation for atleast 2 weeks. We are not allowed to bring Abby up to visit him at this time and for now all therapies have stopped. Dr. Thompson said that this should not make the MLD regress any further and that all we can do right now is hope that the antibiotic can get rid of the bacteria. Lucas will be very sleepy and weak from the medicine. The Baclofen Pump is still working and the concern is that if the infection gets there, they will have to take the pump out.
Thank you to everyone for offering to help with Abby and meals once again and for checking in on Lucas. Please know that Lucas is a tough kid and he knows with the room he is in and how we'll dress that he is in a battle right now. Godspeed!
Tuesday, October 21, 2003 11:31 EST
UPDATE ADDED TO MESSAGE: THE INFECTION APPEARS TO BE IN LUCAS'S URINARY TRACK, HENCE, SO MANY CATHETERS OVER THE LAST SEVERAL DAYS. THE INFECTION SHOWED EXISTENCE OF E COLI (NOT SURE HOW THEY KNOW THAT) AND THEY HAVE UPPED THE ANTIBIOTICS. THEY THINK THE BACLOFEN PUMP MAY HAVE STOPPED AND THEY MUST RESET IT. THE CONCERN NOW IS THAT THEY CAN STOP THE INFECTION BEFORE IT SPREADS TO THE BACLOFEN PUMP WHICH IS CATHETERED TO LUCAS'S SPHINE. THEY STARTED GIVING HIM VALIUM AS THE SEVERE SPASMS HAVE COME BACK. MOM SAID THERE IS SOME GUESS WORK ON THEIR PART RIGHT NOW, BUT LUCAS IS NOT COMFORTABLE AND VERY RESTLESS. THEY HAVE TO STOP THIS INFECTION.
Thoughout Sunday night, Lucas's temperature remained over 100 and the tylenol brought it back down to the mid 99's. It would then go back up to around 100. They did bloodwork on him this morning and it revealed his white blood count was over 25,000. This was not good as that is extremely too high and a sign of some kind of infection. By the time the results came back, Lucas had 2 PT's and 1 OT, but he was very uncomfortable through each and crying at times. His incision on his lower back has been oozing and they have been changing the dressings often. Our doctor at Childrens Specialized Hospital called Hackensack and spoke to the Bone Marrow Dept., Dr. Thompson and Dr. Mazzola (pediatric neurosurgeon). Dr. Gillio in the BMT department was informed of Lucas's blook counts and immediately wanted him ambulanced to the PICU at Hackensack. It has now become a BMT concern and they want him back to see what could be the cause. We don't know if it is a urinary track infection or from the surgery. Lucas was not at all happy today and very restless and in pain.
He had to be cathetered 3 times today to urinate. That procedure doesn't phase him anymore after 15 times in the past few weeks. We canceled his remaining 3 therapies and got him to sleep. Sunday night was a long one for him and us. He was a totally different person than on Saturday. The local ambulance came at 4:00 pm today, but they were not allowed to transport him up to Hackensack. They were able to transport him to Monmouth Medical Center in Long Branch, NJ where he was admitted through the ER. The attending physician was the same doctor who helped us insert his G tube a month ago. She remembered Lucas and his disease. They hooked up an IV and gave him more tylenol. His temp. was 100.3 and we waited for the ambulance from Hackensack to arrive. It finally came at 8:30 and they took Mom and Lucas directly to Hackensack. We noticed more rashes on his legs while sitting with him in the ER. The larger incision in the front looks fine, but the 3 inch incision on his back does not look good. Dr. Thompson and Dr. Gillio are waiting for him at Hackensack when he arrives. Lucas cannot communicate his pain to us like most people, but we know his actions and attentiveness when he is feeling bad. He just sat extremely still and only a broke a smile a few times today.
We had to move out of Childrens Specialized and re pack our bags for Hackensack. The only bright spot out of all of this is no more vending machines and back to 3 delivered meals a day. We know everyone on PICU from Lucas's several other visits. Lucas's journey continues to be filled with many bumps and set backs. The nurses have all commented on how good a patient he is and the fact that he can still break a smile. They all love his eyelashes. Filling in the nurses and ambulance drivers with Lucas's history and all of his procedures takes a lot of time. Practically all of the medical personnel we deal with have never heard of Metachromatic Leukodystrophy and that is why they ask many questions. Mom and Dad have learned to take these situations in stride and remain upbeat for Lucas and Abby's behalf. Getting frustrated and upset helps nobody. Yes, we hurt and wish this had never happened to Lucas, but we're not about to get down and let this stupid disease break Lucas's will and laughter. Godspeed!
Sunday, October 19, 2003 7:48 PM CDT
Lucas was discharged on Wednesday at noon. We drove him directly to his new home at least for the next 30 days, Childrens Specialized Hospital (CSH) in Toms River, NJ. Lucas was immediately made very comfortable and the staff was very warm and friendly. We began to realize we were back in that grind of being with Lucas all day and night and getting Abby off to school and home from school, etc. We met with the doctors and therapists. They evaluated Lucas and set their goals. His incision in the front and a 3 inch incision on his lower back were healing. We quickly adapted to their methods and techniques here. We still help in caring for him, but the staff is exceptional and is well aware of what we have been through with Lucas.
Lucas's first day of therapies on Friday was a busy one. He had 6 consecutive (2 PT, 2 OT, 2 Augmentative Speech). Each was about 45 minutes with 15 minute breaks. It was a long day for him and after his 4th consecutive one he was getting tired. On Saturday, he had 4 therapies starting at 8:00 am and right up to 12:30. They have his charts and know where he was back in March and where he has come so far. It looks like the Baclofen Pump has already been working for Lucas. On Friday, he moved his left arm for the 1st time since Minnesota. He began picking up his left leg a few inches. They are very careful with his incision, but are striving for the goals they set. He has been in good spirits the las few days. We don't necessary have to stay with him during the day, but we do not want him being alone for that long. We have bathroom facilities in his room along with a small pull out bed. He has been moving his bowels and urinating consistently the last 2 days, and they no longer have had to use the catheters to help him along.
Today Lucas had no therapies and the doctor gave him 10 hours outside the hospital. We took him to Mom's parents who live 10 minutes and a local farm that was kind enough to take him on a tractor ride around their farm. We went to get pumpkins and took Lucas. They help us lift his wheelchair and eveything. Their cat jump right up on Lucas and sat with him for 10 minutes. It was refreshing the last few days for Lucas to get some air. Later this afternoon he was getting very restless and uneasy. We came back to the CSH around 7:00 and got him in bed for a feeding. The nurse took his vitals and his temperature was 101.9. They have put him on tylenol for the time being. The body needs time to heal from the surgery and we hope this week the pain subsides and he is less discomfort. Abby has been visiting him regularly and making him smile. Lucas's friend came to visit him yesterday as Mr. Dengler came by to give him his normal crew cut. We must keep his hair short since he is still experiencing a very dry and flaky scalp and the BMT doctors at Hackensack have decided to keep him on his fungal medication to ward off any Graph versus Host disease.
Today, Dad was invited to speak at Lucas's old Hebrew School at Monmouth Reformed Temple. Mr. Levinsky and Rabbi Priesand informed us that for September and October, the Seducka Collection would be for the benefit of Lucas. The children (ages 4th to 12th grade) listened very intently and asked some very good questions. Some of Lucas's old classmates were there and showed concern for their friend. They made Dad, Grandpa and Abby feel very comfortable and relaxed. Telling Lucas's journey for the last 1.5 years is not easy, but we know it can help children learn about life and the difficulty some families must live through. We learned today how much our life has changed the last year. We have been so busy with hospitals, switching houses for Lucas, caring for him round the clock, etc., that we have not been able to do so many things.
We are confident and positive that Lucas will come out of the hospital with significant improvement and we will be by his side every step of the way. We thank everyone who has written Lucas and continue to pray and think about all of our friends and families from RMH in Minneapolis. Godspeed!
Tuesday, October 14, 2003 6:59 PM CDT
*** New Pictures ***
On Sunday, Lucas was moved to the BMT floor at Hackensack, out of PICU. The medication he was given for his flaky scalp cleared most of it the next day. They came in on Sunday and programmed his Baclofen Pump to increase the dosage. He is overall weak, but acknowledging the nurses and mom's orders. Today, they had to put another catheter in him as he is just not urinating. The doctors and nurses in PICU and the BMT floor told mom that he is a very good patient. He has had the catheter put in him twice to help him go. Yesterday, he was experiencing some gagging/choking the doctors think it is his body adjusting to the pump. Also, the doctors really try to bend his leftside to see if there has been any improvement and he just does what he has to do through the pain. Not to say that he doesn't show some emotion or yell out loud when something hurts, but his little body has been operated on and poked so much that we wonder how much more he can take.
We made our decision about the Childrens Specialized School. We are admitting him tomorrow morning for atleast 30 days. All of us are taking him directly to the center. The amublance was ridiculously expensive and a waist of money. We have to stay with him as we did in the hospital each night. We'll do what has to be done to take care of him and fortunately the center is only 40 minutes from home and against traffic. The doctors hope this intense therapy could loosen him up in conjunction with the pump. We have to work out our schedules and atleast Dad is quieter with work. Atleast Lucas received his wheelchair back today and it looks like the adjustments they made should make the chair easier to get him around. Abby isn't happy that Lucas isn't coming home. She continues to take care of when she visits him.
Also, we'd like to thank Scott and Donna Mitchell from G&G Landscape Service for fixing up the yard and lending their help.
We continue follow the journeys of our friends from the Ronald McDonald House and ask Lucas's followers to keep the kids and families in your prayers and thoughts. Godspeed!
Saturday, October 11, 2003 8:24 PM CDT
Lucas had a tough night on Thursday after his surgery. He was unable urinate on his own, so they inserted a catheter in him. He had a restless Thursday overall. They gave him the same stomach/vomit medication he had in Minnesota to stop any nausea from the anesthesia. The catheter was removed Friday at 4:00 pm. He has since been going more often on his own and that is important. He slept Friday afternoon from 5:00 through midnight and most of the day he was basically out of it. They stopped the morphine in the early evening and he remained completely on his back without the bed elevated for 48 hours until 2:00 this afternoon, whereby we elevated his head several inches. Most of Friday night he was quiet and less restless than the night before. Saturday morning he woke up at 6 am and gradually he became more alert and started to smile more.
Dr. Mazzola stopped by and was overall pleased, except she still feels his entire left side is too stiff, so on Sunday they are coming in to up the dosage. They put a small computer over Lucas's stomach and can program the dosage from there. They're increasing it 33 nd the amount of the dosage is still not clear in terms of amount, except that we know it is much less than what we were giving him through his G tube. He is back to normal feedings and the dietician recommended one more can of Resource based on his weight, etc. Dad stayed Friday night and Mom stayed and is staying all other nights. He will be staying through Monday at this point and Dr. Thompson and Dr. Mazzola have recommended together that we get Lucas into the Children's Rehab Facility in Toms River for intense therapy over the next 30 days. They want him to get atleast 4 therapies everyday and that is the place to do it. It he goes in as an inpatient, insurance picks up everything, if he goes in as an outpatient, we pick up everything. We're not sure what to do. We know we can bring him there each day, but we estimate $500 a day for therapy which is not covered and that would come to about $15,000. We want him home, but we still don't know what to do.
As the day went on, Lucas was more alert and moving his arm in bed more. We were waiting for the BMT doctors to come up and examine his scalp and face again. He needs some medication for his scalp right now as we can see the flakes building since we can't give him a proper bath. He hasn't had any therapy in 4 days and we continue to hope that this procedure was worth putting him through. Abby visited him the last few days and was again very instrumental in perking Lucas up. Our family remains very positive and forward looking with Lucas. We believe in everything their doing for Lucas right now and that it will help him be much more comfortable. Godspeed!
Thursday, October 9, 2003 8:34 PM CDT
Lucas had his surgery today at noon. It took about 1 hour and 15 minutes. They brought him back to his room at about 2:45. He was crying a little and in pain. They started a morphine drip and gave him oxygen for about 2 hours until his breathing stabilized. He gagged a few times and also finally had a bowel movement (6 days) just before surgery. Dr. Mazzola said he did just fine. He was a little uneasy going into the OR. This was his 5th trip to the OR at Hackensack, plus several other spinal taps, etc. in his room. When they showed us the incision, we were shocked as it was must bigger than we had expected. He was cut from around his belly button straight around to his side, about 6-7 inches. The incision from his Fundalplycation back in March goes from his belly button to his breast bone (6 inches). They both have strangely formed a backwards "L". They used the dissolvable sutchers. The Baclofen Pump pertrudes out about 3/4's of an inch on his stomach, and is on the opposite side of his G tube. A catheter connected to the pump runs up to his spine to deliver constant doses of medication. According to Dr. Mazzola, Lucas no longer needs Valium, Baclofen drips will take of that, and he no longer needs to go in for Botox.
They are utilizing his port catheter in his upper right chest for all IV's. We started utilizing his G tube for feedings this evening. He is running a 100 temperature and they are monitoring him closely. The doctors and staff are once again exceptional. He managed to open his eyes slightly and watch Pokemon' and Yu-gi-oh. He started to laugh at Dad's silly jokes and expressions. He is overall very weak and subdued. We constantly hold his hand and his grip is getting stronger through the night. He managed later on to lift his right hand to give the nurses a shaky high 5. Mom has to sleep in a room with other parents. Some of the people snore real loud, so our nighttime nurse got her an extra chair to form a bed in Lucas's room. Dad will be staying Friday and Saturday night and we hope to come home Sunday. We will have to keep Lucas out of school for atleast next week.
We don't enjoy putting Lucas through these surgical procedures and we really hate to see him so weak when he finishes one, but we have no choice. He continues to battle MLD and go through so much. We hope he will bounce back fast and get back to where he was in school. Abby will be visiting him tomorrow for the day and on Saturday. She wants her brother home and wants to watch TV with him. She is doing fine in school and with soccer. Lucas knows the Cubs are tied 1-1 in their series. We have his picture with Sammy Sosa above his bed. It has been a great distraction from all of this for all of us. Godspeed!
Wednesday, October 8, 2003 2:50 PM CDT
This morning, we packed our bags, dropped Abby off at school and took Lucas to Hackensack for admission for his baclofen pump procedure. They took Lucas up to the PICU and we got him settled him. Mom recognized some of the nurses and they remembered Lucas. A few of them remembered how stiff he was last time and that he had looked a little more loose and relax than the last time. Dr. Thompson with the assistance of another doctor performed another spinal tap on Lucas. Lucas went under in his room for about 15 minutes and Dr. Thompson injected the Baclofen into his sphine. He is looking for reactions and rashes for the first few hours. It Lucas can tolerate it, then they feel he will move on to the next step, having the pump put in sometime tomorrow by Dr. Mazzola.
Mom and Dad were there with him during the procedure and he woke up to Dexter's Laboratory on TV. He didn't cry or show any pain. He'll go into surgery tomorrow and could be home sometime on Saturday. Dr. Thompson can't be sure if the pump will loosen him anymore, but atleast it should cut down on the medication dosage and hopefully his drooling. We can't describe how much respect and admiration we have for our son and his incredible attitude through everything. He knows his body is breaking down, but he smiles right through it. He makes it easier for us to take care of him and for others who care for him.
Lucas has been doing Ok the last 7 days. He got his new wheelchair on Friday, but it is very top heavy and difficult to get around. We dropped it off today to the shop for adjusting and hoping that it will make it easier for him. He does sit much more comfortably and relaxed in it.
Once again, thank you for checking in on Lucas. Godspeed!
Tuesday, September 30, 2003 8:13 AM CDT
Lucas has been much more alert and happier the last few days. He has been holding his head up more. Since the last update he still has had congestion and some of the nights he has been awake and gagging, although, not as much as early last week. School has been going OK for Lucas and he leaves everyday with a smile and comes home with a smile. His drivers are very friendly and we usually have 5-10 minute conversations with them each time. Lucas has had PT several times and continues to get through each session. We continue to give him a warm bath every other day and wash him down the other day as we have found that his scalp and joints are looking better with more frequent baths. Since he still bends his arms, his elbow and arm pits are moist and some spots are flaky, so the the creams, powders and washes are helping him.
We have to take him to Hackensack Medical Center on Saturday for his blood work and then he'll be admitted on Wednesday the 8th to have the Baclofen pump put in him. We are somewhat concerned where it will go and how it will affect him sleeping and with the ability to lift him. With his G tube and port catheter in the front and now with a hockey puck sized instrument in his lower back, we are curious how he will be. 120 mls. of Baclofen per day is extremely high, but extremely necessary. We hope the pump cuts down on the dosage and slows down his drooling. He'll be in hospital for atleast 5 days and Mom will probably stay with him.
With the weather getting cooler, we're now putting long pants and long sleeves on him. Shorts and t-shirts were much easier. We have not put his glasses on him for a long time and will probably not put them on for the future. He continues to hate anything on his face as he runs his right hand over his cheek, head and back down. He doesn't like to where hats either.
We have had some issues with Abby, basically about going to school and eating in the cafeteria. She complains about the noise in the lunch room. Strange coming from a six year old who is very loud herself. We take her to school each day and pick her up. It seems as though Monday is the toughest day. She is doing very well in school overall and enjoys ballet and soccer. She still is her brother's best medicine. Lucas and Abby receive a lot of attention in our home. Mom and Dad are home everyday. With Dad working from home, it has been a blessing for our family. Each day with Lucas is priceless and we make sure he is mentally stimilated before and after school.
Lucas always enjoyed participating in sports and trying his best. How he went on the field while unable to judge distance, with no depth perception and no side vision still amazes us. As Mr. Glassmacher told the newspaper last December, "Lucas just wants to be out on the field playing with his friends!" Whether it was striking out everytime or not seeing the soccer ball, he still laughed and joked. Saturday night was one of the golden moments for our family. The Chicago Cubs won their division and made the playoffs! Dad would follow their pennant drive on the computer and keep Lucas informed on their scores. Following the Cubs has been great therapy for Lucas and our family. Lucas predicted last December during his chemotherapy week that the Cubs would beat the Yanks this year for the championship. There couldn't have that many people 10 months ago believing that. It's how we deal with each day, optimism and laughter. There are no alternatives. Godspeed!
Monday, September 22, 2003 1:37 PM CDT
One year ago tomorrow, 9/23, we were informed by Dr. Barabas, his neurologist that Lucas had some form of a disease called Leukodystrophy. Five days later, the blood work came back from the Mayo Clinic showing Lucas had Metachromatic Leukodystrophy. Dr. Barabas gave Lucas 12-18 months to live and he referred us to Dr. Krivit in Minnesota. Dr. Krivit gave Lucas 1-2 years to live without a Bone Marrow Transplant. Lucas had the stem cell cord blood transplant and he now has the enzyme in his body to slow down the mental deterioration. Physically, the BMT cannot help him and Lucas is paralyzed, can't eat, can't talk, but he is alert, although tired from his medications. It's been a very long rough year, but he is showing incredible courage and desire. He can laugh and cry at the same time. We have received unbelievable support and help and have met some of the kindest, generous and bravest people along the way. It has been a long road, but we feel that God has not let us go it alone and we can now reflect on the strength he has given us and the people he has sent Lucas's way.
Last Friday, we received news from Hackensack Medical Center that they have decided to forego having Lucas admitted twice to perform the Baclofen Pump procedure. Originally the pump was scheduled for early November, but Dr. Mazzola's office called us to let us know that they'll do the trial (which is intended to help the doctors see if Lucas can even accept the pump and the projected doses of medication he would then need) and followup it right up with the procedure. He'll be in hospital for about 6 days. We preferred not to have Lucas admitted twice and just have him in once to get it all over.
Last Wednesday at Lucas's school, Dr. Barabas, the child neurologist who diagnosed Lucas 1 year ago tomorrow, saw Lucas for the first time since last October. He seemed surprised to see how debilitated Lucas was. His original prognosis for Lucas last year was that he thought he was too far along for anything to help. He was partially right with Lucas's physical decline, but mentally, we believe we have made some gains there. We informed Dr. Barabas that Lucas is on 120 ml's of Baclofen a day and he was very surprised that Lucas was alert. He has never heard of such a large daily dose even for adults. We informed him of the spasms and pain he would go back to if we lowered it. Lucas's disease and struggle has taught many doctors how little they understand of the effects of his disease. The pump will hopefully eliminate such a high dosage, plus the drooling. Lucas had trouble keeping his head up with the doctor, but he tries and struggles to look at you. While at school last week, we sat in on his class. A few of the children are very talkative and it seems like they like Lucas a lot. The teacher and aides informed us that they love his smile and willpower to hang in there for the long day. When he comes home, he is very tired and we take him to bed. We try to get him on his Lazy-Boy recliner for a little bit so that he isn't stuck in his room.
Lucas went back on his fungal medication last week. The next day he started gagging, mostly at night. We have been up the last several nights with him. It seems like when he starts or goes back to an old medication, he has negative reactions to it. He seems to have a slight cold also, but we have been giving him cough and congestion medicine. We can tell what kind of month it was for medications by the amount of the rebate vouchers we get back from our Toys R Us credit card. It returns 1% and when we see a $20 voucher, we know what we'll owe the coming week.
Last week we stayed at a hotel Thursday night when the hurricane was moving. We were concerned about our trees that need taking care of. It stayed west of us although we had some hurricane force wind. We turned it into a nice family night and didn't have to worry about anything. Lucas and Abby had fun and our friends brought over a birthday cake for Abby (6). Abby started school last week and is getting settled in. Today we kept her home with a 100+ fever. One week in school and already germs. We still wash our hands often, but you can't stop it 100%.
Last week, Mom and Dad went out for lunch a few times with both Lucas and Abby in school. The days are definetly slower with both kids in school. Lucas now weighs over 60 pounds and growing. Giving him a bath is a performance. Dad has to carry him in the bathroom and go straight to his knees to get Lukey in the bath. It helps him tremendously, especially with his dry scalp. He still gets his normal haircut every 3 weeks as we try to keep it very short for dryness and cleaning. We hope our friends in our community know how much we appreciate them getting us out and about. We still pray for all of friends we met in Minnesota at the RMH. Godspeed!
Monday, September 15, 2003 12:25 AM CDT
Since our last update, we have received some very sad news. Bret Golightly and AJ Toivola passed on. While at the Ronald McDonald House in Minneapolis, we developed bonding friendships with several families and children. We shared our day to day ordeals with each other. Both of these children were very special and we cared so much about them and prayed for them. We want their families to know how much their friendship means to us and that we think of them daily.
As we are writing this update, the Hurricane is approaching. Mom and Dad have decided to take Lucas to a hotel for Thursday night to be on the safe side. We have some tall trees that we were planning to take care of next week, but things are happening now. If case of a problem, we won't have to worry about getting Lucas out, etc. Thursday is Abby's birthday, so we are telling her that we are making it a family night together. Abby started school today and with Lucas off to school, Mom and Dad have to adjust. For a year, each day was hectic and we were never short of chores. Lucas and Abby will come home about the same time.
Lucas had his monthly check up at Hackensack last week. His rash and dryness (GVHD) haven't gotten much better and the BMT doctor put Lucas back on his fungal medication that he stopped months ago. He is still on the prednisone. They are not too concerned with what they have seen and continue to think Lucas is doing OK. We are scheduled to admit him into hospital on/about Oct 9 for his Baclofen Pump trial for about 4 days and then for the procedure (5 days) in early November. The last few days Lucas has been having indigestion concerns and we have had to go back to venting his belly through the G tube and stop his feedings. We believe he enjoys school and we are happy with their programs and routines. We continue to get Lucas out for walks and keep him busy with Abby's help. It's been almost 1 full year since Lucas's diagnosis and we reflect on that experience. Other children from town continue to be very kind and friendly with Lucas, and it helps his and our moral when we see that.
We went to our first block party for our street and it felt very comforting to see many of the kids come over and greet Lucas. All of our neighbors were very kind. He manages on his own to raise his right hand, abeit very shaky and slow, for a high five. Many ask when he will get better or if he will return to school and we give honest answers to them. For Lucas's benefit, and Abby's, we have no choice but to remain strong and positive. Everyday we think about how he used to be, but this is his life now and we thank God for each day. We tell people that "we don't think about yesterday and we don't think about tomorrow, today is everything to us." Godspeed!
Saturday, September 6, 2003 12:14 AM CDT
Thank you for checking in on Lucas's progress.
On Wednesday, Lucas started school at Shroth's. The ambulatory van came at 8:30 to pick him up. Lucas appeared to be looking forward to school and we believe he enjoyed himself the first 3 days. After caring for him every minute of every day since Sept. 23, 2002, it was strange to see him off to school. It's about 3-4 months sooner than we had expected, but we think he enjoyed it. His driver and aide are very friendly and caring. We wheel him right onto the lift and they take him right it. It is a tight squezze because his legs don't bend. They have to jockey him around inside and then they tie down each wheel. We followed him on the first day and walked into his classroom with him. He is still immuned suppressed, but Hackensack has given us the go ahead while using common sense. We seem to be getting into a routine now in the mornings. It was strange walking by his bedroom and not stopping to take care of him. We are very pleased with the school and the staff.
Abby starts 9/15 and is doing fine. She had her first soccer game today and she and all of the girls had fun. Lucas was there to watch. We get him out and involved with seeing as much as we can with him.
We have been cutting his prednisone back, unfortunately, once again the rashes and bloches and dryness have come back. We have to increase his dosage and keep applying oitments to control it. His congestion and infection have totally gone. He has become more regular with his bowel movement. We check in every night on him to make sure he hasn't gone. We do not want him sitting too long with anything. His skin is already very sensitive.
Last night, Mom noticed that his plastic clamp on his peg/G tube had broken. He sometimes pulls on it and probably over time they wear out and fall apart. We tried to put the new one in his stomach, however, we couldn't do it. We called our friend Kathy Reardon, RN, who has stopped to help on several occassions, but it wouldn't go in. We were advised to take him Monmouth Medical ER. The Pediatric Doctor also couldn't get it in. He was overdue for Meds and feeding. They inserted various sizes of FoleyCatheters to stretch it out and it still failed. We used the catheter to give him Valium and that calmed him down. After 1.5 hours of waiting the Doctor came in and put it right in. We came out late Friday night and atleast he didn't have to be admitted. Lucas will cry and get a little down, but it is OK. How he continues to smile and laugh at times, while knowing how far he has debilitated and everything he has gone through gives us strength to keep him positive. Last year he was on the soccer field and making jokes, this year he can only sit and watch and struggle to keep his head up. Keeping him laughing and stimulated is our constant job.
We continue to follow all of the families from RMH and pray for everyone. Also, thank you to Brad & Bonnie Cooper, Lucas's PT's for inviting Lucas last week to meet Yogi Berra and for all they have done. Lucas laughed when we said his name is Yogi, Yu-gi-oh. Godspeed!
Friday, August 29, 2003 8:55 PM CDT
We continue to keep a close watch on Lucas after he fell out of bed last week. We are still baffled as to how he did it, but he has some puffiness behind his neck and shoulders. We contacted our BMT specilist at Hackensack and it appears not to be of major concern right now, but we have to keep an eye on it. If through the weekend it doesn't change much, we were instructed to take him to the Pediatrician to be looked at. He has been stiffer and tighter the last few days. Transporting him around has become more difficult. He isn't as flexible as before his last Botox treatment. He will be going into hospital in early October for his Baclofen Pump trial. This will determine if the pump is appropriate for Lucas. He continues to drool considerably. We just noticed how much his faced has puffed up again because of the prednisone, but since we have been lowering the dosage, his bowel movements have become regular and his rashes have not been so noticeable.
Last night, we went out to eat supper as a family for the 1st time in ages. We took Lucas to his favorite place, Shiki Japanese Steakhouse. We had our own hibatchi table and Lucas was making many loud noises of enjoyment. Especially when the Chef tossed a shrimptail at him and he also built the Onion Volcano. We fed him a shrimp, but he stored it for 5 minutes and we took it out. We fed him the only thing he can eat, a cup of orange sherbert.
Lucas starts school next Wednesday and we are hoping this will stimulate him even more. He normally doesn't go more than 3 hours in his wheelchair, but they told us if he looks tired, they have beds for him to rest. He really needs to be kept stimulated. He doesn't nap, so we spend 99f day doing things with him and Abby. Abby starts school 9/15. She starts ballet and has been playing soccer. She continues to be her big brothers best medicine.
With the many kind and generous people who have helped Lucas
over the last year, it is very difficult to mention all of the names. Several of them have given us so much support and yet they have battled their own tough situations. From time to time we have mentioned many names, but we'd like to thank again Phil Shaheen, of Builders General Supply in Little Silver, for all of his support and generosity.
We have been following several RMH families websites the last several days and we want all of you to know that we are praying for everyone and we think of you daily. Stay strong and be proud of how brave your children are. Our friend Michelle from Iowa, whose son Bret is one of the most tenacious kids we know, said to live each day fully and enjoy the precious gift of your children. That's our belief and there is no looking back! Godspeed!
Friday, August 22, 2003 1:53 PM CDT
Last week, Lucas's fever subsided and he began having a loose cough over the weekend. After contacting Hackensack, we took Lucas to the pediatrician to get it checked out, especially his lungs. All sounded clear in the lungs and he was given an antibiotic with a cough suppressant for a week. He has been feeling uneasy this whole week, especially after Tuesday. Lucas lays in bed with his head slightly elevated. We have bed side guards on each side, but we generally only keep up his left arm side of the bed. He doesn't move much, but that is the side he favors. Dad was working in the afternoon and was checking in on him every ten minutes and he was in the same position. Then there was a thump and Dad ran into to see Lucas wasn't in bed. He had somehow fallen out on his right side and was face down on the floor. He was crying and we couldn't tell if anything was wrong. We called our friend Kathy Reardon, an oncology nurse and she ran over. Outside of his crying, it didn't appear anything was wrong and she recommended we call Hackensack. They informed us to watch him closely and look for any bruises or marks. If he continues to be bothered, we'll have to take him in for X-Rays. The osteoperosis is a major concern. It has been difficult moving him the last few days.
His Physical Therapies the last few days were difficult for him. Unable to communicate to us, we have no way of knowing if anything bothers him. We can only go by looking at his skin, rashes, etc. The Pediatrician said that Mom has been doing a very good job of keeping his skin, especially his scalp, butt and elbows, moist. His bowel movement is more regular now. We are now leaning towards having the Baclofen pump put in. He is on such a high dose, that it is probably causing the drooling and when it begins to where off, he becomes very uncomfortable and the spasms occur. The pump will not only lower his dosage, but give him constant medication. We are awaiting word for us to take him. He'll likely be in hospital for 4-5 days.
Abby has been doing her part in helping Lucas. She sets up Lucas's monitor for his feedings. She also turns off the monitor when it is up. All we do is fill up the IV bag. We are looking into utilizing our school social worker for her this fall. She appears find, but it can't hurt to have an expert talk to her from time to time.
This past week an article about Lucas and Little Silver appeared in our local paper The Two River Times. To read it, go to www.tworivertimes.net. It starts on Page 1. Dr. Krivit was also interviewed for it. Doris Kulman, who wrote the article, did a great job.
In recent days, some of our Ronald McDonald House friends have had some tough battles. The Trimpers (Michigan) are taking there 2 youngest children Sam and Maddie to Duke for the same BMT their bigger brother Max had in Minnesota for MLD. Brett from Iowa (via RMH) is fighting very hard right now and Addison J. is battling very hard back at Fairview in Minnesota. These kids and there families are fighters and courageous. The impression they made on our lives can't be put into words. Please find a moment to pray for their strength and improvement. Godspeed!
Thursday, August 14, 2003 3:42 PM CDT
THANK YOU TO EVERYONE WHO CAME TO OUR THANK YOU PARTY AND ALSO TO EVERYONE WHO HELPED OVER THE LAST 10 MONTHS AND COULDN'T MAKE IT OR DIDN'T GET WORD ABOUT IT! (WE TRIED TO REMEMBER AS MANY AS POSSIBLE.)
Lucas was very excited and made many screetching noises last Sunday at his party. Approx. 150 people attended and some came as far as 120 miles away. It lifted his spirits and ours too. All of the kids had fun. Food was donated by Citarella's Italian Market (Red Bank), Jersey Mikes Subs(Middletown), Pete Roskowinski (Little Silver), Ye Old Pie Shoppe (Little Silver), friends and family. It was great to bring people together and let everyone see how we live each day caring for Lucas, how much was accomplished with the house and to just meet Lucas. Powerhouse Signworks, Jim Bruno donated a large banner dedicated to Lucas and it was signed by everyone and had names of companies, RMH, organizatons, neighbors, friends and family who have helped since September 23, 2002.
Lucas followed up the party the next few days with a 102 fever. His bowel movements are infrequent and we have tried everything recommended. It could have contributed to his fever and his extreme restlessness. We were up with him most of Monday night. It finally broke Tuesday evening. They cannot pinpoint which medications could be causing this, however, it really started when he had rashes from GVHD (Graph vs Host Disease) and he was put back on prednisone. He still has dryness, but it is much better. He continues to drool. He has had his daily PT and OT and they work him very hard. The osteoperosis affects how they work with him. He is still cognitive, although he has had a few more bouts of "zoning out" lately.
We went to Hackensack UMC yesterday for his 4 week visit. Dr. Thompson is not totally satisfied with the Botox reaction with his legs and left arm. He has maxed out with his Baclofen dosage and can't go any higher. He feels he is too stiff. He has recommended that in the next 3 weeks, we admit Lucas for atleast 3-4 days and have a Baclofen Pump inserted into his spinal cord for more direct and constant flow of medication. This is a one hour procedure and shouldn't affect him mentally that much. This could cut down on his drooling and make him more comfortable. We hope to do this before he starts school. The BMT doctors were happy with his blood counts and overall appearance. They want us to halve his prednisone and ease him off of it.
Mom and Dad continue to work with physically and mentally. We read to him and keep him laughing. The hot tub has been terific therapy. With a temperature of 96 degrees, after 45 minutes of massaging his legs and arms, he comes out very relaxed and his legs are bent. In due time, they do stiffen up, but he thoroughly enjoys the time in the tub. Our days as parents go by fast and tiring. With things winding down with the house, Dad's work and school approaching, we hope to get some respites.
Many of our friends in town have helped get us out for a time, as one of us must stay home. Mom has gotten out a few nights and had a good time. Dad was asked to play bocce with members of the men's softball league and was invited to fill in for the Croc's softball team last night. We went to the game as a family and he asked that no one laugh at Dad since he hasn't played in 12 years. When we got there, Dad dropped a cooler on his ankle and it swelled. Dad ran after a long hit in right field and ran smack into a ten foot chain fence and pipe on the tennis courts, got up groggy and sore, but OK. The next inning he was charging after a basehit and stepped into a hole and pulled his hamstring. He didn't get up. Lucas couldn't stop laughing and it made for a lot of jokes for everyone. He stayed in the game with one leg. After seeing your son suffer and fight for his life for 10 months and go through so much and waiting 12 years to play, there was no way he was going to sit out. Lucas fights pain everyday. He has shown us so much courage, our pain and ill feelings are nothing. Fortunately, Dad can still lift him and carry him around. Mom has had a sore back after lifting him, but she continues to do a great job caring for Lucas. We are tired, but focused. We know what we must do together for Lucas and Abby.
Thank you again for checking in on Lucas and we ask that you pray for all of our friends and their families home and still at the Ronald McDonald House. We think of you daily. Godspeed!
Tuesday, August 5, 2003 2:43 PM CDT
THANK YOU PARTY - SUNDAY AUGUST 10 AT 3:00 TO 8:00 OUR HOUSE AT 63 SILVERTON, LITTLE SILVER 741-3181
We typed an update and the screen went blank and lost it. Lightning knocked out our modem last Friday.
Lucas has been about the same. The days are very busy and long. He continues to drool, have bouts of restlessness, and experience some pain. We have been upping the valium to settle him. He has been working very hard with OT and PT. They work him with stretching and sometimes he breaks out crying. He is getting stronger with his trunk and grip. He is doing better keeping his head up, but it may only last for a few minutes. It is improvement! He wants to move and he is learning to move with our help when we change him and put him in his chair. The Botox has yet to kick in with the left leg, as it is still very stiff. His G tube/peg came out last week and with some help from our nurse friends, we were able to get a new one installed at home. We were told it is our decision if we feel that we must take him to the ER, but the oozing was not to bad. We go next week to Hackensack for his check up.
We were very happy, and we think Lucas was too, last week when we registered him at Schroth's School. We were happy with their programs, the fact all therapies are on sight and mainly that they have an augmentative speech specialist on sight. The other schools didn't have that and plus we like the school for his disability. Nurses and staff met with us last week and they all met Lucas. Hackensack gave us the OK to get him into school this September and we didn't have to wait until December.
Last week Lucas was able to get to see Manchester United play with a few of his friends. The day before we took him to the Man U practice and he had his soccer ball that they had sent him autographed by a dozen players. Taking him to the practice showed us how difficult it is to get places with a disabled person. You're limited to where you can go and he was unable meet the players in the stadium. Dad took him to the buses and the state police helped guide the players over. Up to that point, Lucas was very uneasy, but the first autographed brought him a smile. Some of the players hugged him and said a prayer over him. This really lifts his spirits.
We keep him laughing and do whatever it takes. Abby is keeping busy with playdates and helping with Lucas. She turns off his monitor, knows how to set the feedings and water flushes and keeps him laughing.
We hope everyone who has helped us since September can stop by to visit Lucas. Please get word around as we don't have enough time to inform everyone. We continue to pray and think daily about our RMH friends. Godspeed!
Wednesday, July 23, 2003 11:33 AM CDT
HOUSE THANK YOU PARTY SUNDAY, AUGUST 10 @ 3:00!
Lucas had his normal visit to Hackensack UMD last Tuesday. We had several questions concerning his drooling, school and bowel movement. We were told that the medications could be causing both problems and we have to wait and see if it changes by next Monday. There is medication for the drooling, but the side affects may not be worth it. We started giving him Milk of Magnesia and it works fast for his bowel movement. We go through about 20 rags a day and about 5-6 shirts for the drooling. His blood counts were fine and we were told to maintain all medication dosages. The BMT doctor informed us that he feels Lucas can get out in public more and start school. He is not 100but far enough along to get him exposed to the outside world again. Lucas enjoys music therapy as can be seen in the above picture and blowing the trumpets and pipes. He has made some strange noises the last few days and still screetches out loud when he sees something he likes. The therapies have been hard for him, as sometimes he is stretched too far, but it is needed. The Botox doesn't seem to have kicked in for his left leg as it doesn't bend like his right one. He has had some restlessness and discomfort the last 24 hours and we're not sure why. It's days like this that seem to never end.
Mom and Dad have to go back one more time to look at the schools for Lucas, but we're pretty sure which one it will be. We believe this will be a positive step for Lucas and stimulate him. We spend a lot of time with him, activities, PT, stretching and we think the programs at the school will help him. The days are very busy and trying to keep Abby active and involved. It hasn't been easy with her as we can see the attention we must give Lucas is wearing on her little 5-year old demeanor as she reaches out for equal attention. She is good with him in many ways, but there is only so much we can do with her each day and we try to keep her busy.
We've taken Lucas down to the Sandy Hook beach and accessed the new walkway that was installed in memory of some 9/11 victims. It is a blessing. We enjoy early evening rides to the beach and now Lucas can be wheeled down to within 25 feet of the water and Dad carries him down to the waves. We don't have to stay on the promenades. We've been to his friends' baseball games downtown and also for ice cream downtown. We all went to our town's birthday picnic where Kathy Lindenthal sold Teddy Bears. Many of the kids enjoyed meeting and doing silly things for Lucas. The sale was called "Lucas Bears." The Knights of Columbus from Dad's hometown made a donation and are planning to do something with other chapters for Lucas. Jane Sutherland from town has been working with Mom to figure out our medical bills. We are filling our 2nd TV box and they were able to verify which bills we should pay and which ones were paid twice. DeFalco Pool in Fair Haven gave us a great deal on a Hot Tub for Lucas. Our friend Clyde set up all of the electrical for it and we look forward to getting Lucas in it. The doctors and PT's said it would be greatly beneficial for Lucas if we could swing it and Gene helped us out. As Lucas gets bigger, our backs will probably need some therapy too. Mom is lifting Lucas up more and getting stronger. We know it is only going to get harder, but we'll find a way.
Our family, friends and community continue to be there for us. We also have some friends here in town who have had some
tough times of their own and with their families and we think about them often. Our friends the Trimpers have gotten some positive news with the kids and we continue to pray for them as we do for our friends from RMH.
We are getting word out there to everyone who has helped us the last 10 long months and who have helped us with our new home that we are planning a house warming party for all on Sunday, August 10 (not the 3rd as orginally planned) at 63 Silverton Avenue. We'd love everyone to stop by for a bite to eat and drink and visit Lucas. Our friend Clyde Snyder, Albright Electric, said he would perform music for us. We are planning to start around 3:00 and go into the evening. If possible email us or call if you can make it, otherwise just stop by. Please mark your calendars.
We thank God that this journey has been made less difficult by so many people who care about Lucas. Godspeed!
Sunday, July 13, 2003 7:13 AM CDT
For the past week, it was very apparent that the Botox from May was wearing off. We could sense and feel the stiffness and uneasyness coming back and he was in more pain, so the call by the Doctors to schedule Lucas on July 12, 3 months out, was right on. We found ourselves upping his valium as the week went on. In the beginning the Baclofen seem to make a difference and it probably still is, but the Botox is the main difference. Yesterday, Lucas was back in outpatient surgery to receive his next dose of Botox. Dr. Mozzola who does the injections, monitored Lucas's condition since May and made a few adjustments. She did say that she cannot inject near his feet as they are to rigid and too far cupped to correct. We held out hope that maybe the Botox could miraculously loosen his feet, but the disease is too far along and there is nothing we can do down there. However, Dr. Mozzola got some good deep injections and Lucas, except for a few cries in Pre-op, went into surgery quietly and came out 45 minutes later. He seemed not to be in that much discomfort this time around and except for about 30 new holes in his body and some bleeding, he rested calmly and was relaxed for the rough 2 1/2 hour ride home in the beach traffic.
He continues to drewel (drool?) constantly and we go through dozens of towels and shirts each day. We give him more water through his MickeyPeg/G Tube as the drewel is fluids he is not retaining. He sits up better and longer and can keep his head up more is his reclining chair. He moves his right hand more and has a strong grip, but a clumsy grip. He grabs with his pointer finger and thumb without much help from the other 3 fingers. Smiling through episodes of pain along with crying at the same time is the norm. We don't know if his throat is bothering him or if the muscles in his neck or upper back ache, but he reaches for his head with his right arm very often. He still pulls out his feeding tube and we have to monitor him often to make sure it is still in.
We are coming to a realization that no day will be easy and with daily visits by the therapists, constant changing him, feedings/water flushes/medicines/soothing him and keeping Abby busy, along with our house chores and work, that we won't have to worry about what to do each day. However, after being in our new home now for 2 weeks, that daily grind has been made easier and better for all of us, especially Lucas. He spends so much more time with us. He sits with us in the kitchen, in the family room watching TV, with Dad in his office, etc. We can get him outside faster and easier with the ramp and we have more incentive if the weather permits to do that. His family, friends and neighbors call on us often and visit him. The visits are very important for him and us. He enjoys having stories read to him. We encourage everyone to stop by and visit, read stories to Lucas, have a beer or soda. It is a Viscomi policy not to call first, just show up.
Mom has seen some schools for Lucas and so far has been very impressed and satisfied. He is looking at possibly starting after January when his immune system matures. We don't know how he'll take to the schools, but we think it will stimulate him. He still smiles and laughs at the silliest of things. He now loves watching all 3 Austin Powers, especially, Minny Me and we get a lot of material to make him laugh during the day. His favorite line is when Dr. Evil plans to take over the world and asks for "1 million dollars." The night comes, we pass out very late, but one ear and one eye are always alert on the TV watching him.
Hopefully this week, Mom can settle in to writing our RMH friends and families and just touching base. We still only get on the computer once every few days as the days are still too long and go by so fast. Once again, thank you for all of your support and messages for Lucas. Godspeed!
Thursday, July 3, 2003 10:12 PM CDT
See NEW Photos in 'View Photos' July 8th.
Happy 4th of July America!
We have finally plugged in the computer and have phone service. So much to cover and update, but we want to update Lucas's recent health status.
The last few days have been very rough on Lucas. We are trying to figure out what has been bothering him. He did not have a bowel movement for a few days nor did he urinate. His neck and stomach seem to be hurting him and he cries out in pain. Yesterday started out fine, but he began crying and getting very flushed and tense. We upped the valium, but he continued to be very uneasy. We soothed him and stayed right by his side. As the day went on, it wasn't looking good for Lucas and Dad to go to the Phillies/Cubs game where Lucas was VIP for the day thanks to the perservance of Dianne Baldwin to make it happen. At 3:15 he was still crying and in pain. Dad decided that this was so important to Lucas and we decided to go. He cried all the way to Philly and he was biting on his rag and drewling considerably. Hackensack felt that his drewling is causing the fluids to leave his body and not flush his system. He suffered all the way on the 1 1/2 hour trip. We were met by a rep from the Phillies who gave Lucas a ball and cap and she escorted us onto the field behind the batting cage and Lucas started to perk up and settle down. He's a big Sammy Sosa fan and a Cubs supporter. In December during Chemotherapy, he said the Cubs will be champs this year. We were greeted by Larry Bowa the Phillies manager and he spent 5 minutes with Lucas and he had Jim Thome come over and spend time. He was only suppose to meet the Phillies and several did signed his ball, but then Sammy Sosa while stretching 20 feet from us came over and sign Lucas's Cubs hat and ball. He said a few words and Dad told him that last year Lucas's wish came true to see Sammy at Wrigley, except he didn't hit a home run that day and he laughed. Dusty Baker, Cubs manager, stopped by and Dad told him about Lucas's prediction in December. Lucas made it through 7 innings receiving his feedings, water flushes and medicines. We left and found out Sammy hit a homer. He was restless on the ride home, but incredibly and courageously he made it. I haven't seen such courage from Lucas to sit so long and to put up with the pain so that he could meet Sammy. The Phillies are first class and so are Dusty Baker and Sammy Sosa for breaking tradition and coming over to see Lucas. I hope they could know how much he fought and suffered to be there. Since Lucas couldn't say it, Dad said it for him each at bat "Sammy, Sammy, Sammy, Sammy."
Today was another similar day as yesterday. Bouts of pain and some crying. He is getting stronger and his right hand has an incredible grip. He still shakes a bit. He had his peg inserted last week, however, he stills pulls on it. Not much laughing today and the valium hasn't helped much. We feel helpless and fail at trying to calm him down. Very frustrating. Abby has seen a little too much the last few days and she has seen her brother fight through the pain. Long days for all of us and taking it slow and patiently. After settling him down and cleaning up, etc. we usually get to bed about 1:00 or later.
We moved into our new home last Saturday. Stephan Lowy, Lowy's Moving, donated a truck and 3 of his best men to move us in. The Little Silver Fire Dept. and First Aid Squad picked Lucas and Abby up at 1:30 and drove them over to our new home. We wheeled him up his new ramp and showed him the house. The coordination and relentless effort by Doug Glassmacher made this possible. We had so many volunteers come in last week and put the final touches on everything. All American Line Stripers (Brad) spent late hours with his equipment drying the floors and enabling them to be completed. Albright Electric (Clyde) came and handled all of the puzzling electrical work and wiring for the kitchen. Many members of our towns Softball teams came by to install fixtures and paint. Kevin O'Malley, who came just about each nite the last 6 weeks to help showed up with a few Navy SeaBees (Construction wing of the Navy)from Earle and finished Lucas's ramp and handled other jobs. Ye Old Pie Shoppe (Gumba Tom) helped and dropped off the best baked goods around. New Jersey Natural Gas gave us a great deal and they got a few men over to install the A/C just in time for us to move in. Marpal Disposal (Rich) donated another dumpster as we tore out the basement after spotting mold. This house has been thoroughly cleaned, sanitized, primed and checked for mold, etc. An incredible amount of work and efforts by many volunteers. Even in 100 degree weather. We could not have done this for Lucas without your help. We have a great community here in Little Silver with some incredible unselfish people. Many, many have helped since Septembe 23. Our family and friends and all volunteers must know how deeply humbled we are and that you have helped our lives and most especially Lucas's.
After a few days in the house, we still have a lot of unpacking to do and a few jobs to finish. We closed on our house on Monday with the help of Jeff Gale and our realtor Gloria Nielsen cut their commission and our realtor made a donation to Lucas. The buyers realtor, who turned out to be Dr. Orlacchio's (a family friend who has helped Lucas) daughter donated part of her commission to have her husband, G & G Landscape, fix our yard. Doug also built 2 ramps to the family room and the deck for us to wheel Lucas. We have seen a big difference in all of our lives by being on one floor with no steps. Except for a few difficult days, we have gotten to Lucas faster and have spent more time with him. We took him for a walk in the neighborhood and he enjoyed it. All of our neighbors have stopped by and offered any help they can. Many people are aware of Lucas's battle and it is very humbling to hear their comments about Lucas.
We are still very busy settling in, but a day doesn't go by that we don't think about our Ronald McDonald House friends and families. We also think about the other families who have learned about Lucas through friends and have shared their childrens battles with us. The distractions from being so hectic help keep our mind off the negative thoughts, but it doesn't mean that the tough moments don't get to us. We wish he could communicate to us and let us know what bothers him. We thank you for loving our LUCAS! Godspeed!
Sunday, June 29, 2003 0:12 AM CDT
The move finally took place. The Little Silver Fire Department arrived to transport Lucas to their new house.The moving truck finished unloading at about 7pm. This very brief message is from Grandpa Barry, as Verizon did not connect the phones as promised on Friday and David & Sam are unable to access the Internet. I wil leave the full details and thanks for David to add, as soon as he is back online.
New photos from the move are in the gallery. In addition look in the link at the bottom of the main page for more pictures of the move.
Sunday, June 22, 2003 6:23 PM CDT
The last week has been hectic and busy with packing. We move on the 28th and each day attempt to accomplish something. We keep telling Lucas we're almost in our new home and he'll be enjoying more of our time. He won't be left alone upstairs while we are busy and he won't have to be carried up and down stairs anymore. Sale of our house will close on the 30th, so a lot of things will be coming to an end and most of the craziness will stop.
Lucas has been more alert the last few days. His gagging has persisted through the week and at times we just simply turn off the feeding and let him relax. He goes back to Hackensack UMC on Tuesday for his check ups and on July 12 for his Botox injections. He is actually getting a little stronger with his upper torso and some of the exercises the PT's and ourselves are doing have helped him sit up for a few minutes with our holding him between our legs. We actually don't hold up his head nor from his stomach on up. He keeps his head tilting down a little, but his big eyes keep focused on the TV. Carrying him the last few days, except for his weight, has gotten slightly easier in regards to his legs bending and his neck being stronger. We keep him moist with our solutions and keeping his hair short has helped. When he has PT or OT, they work him very hard and he does feel pain and make noises when being worked on. However, it is helping him get stronger and he must be pushed.
We have gotten great news from the school as he will receive OT and PT through out the summer and they will be working with Mom to locate a special needs school. Trying to find a way for him to communicate will be the next big step. We are very hopeful that his getting back into an educational environment will help him reacquire some normalcy with his life. He continues to smile and laugh at the silliest of things. It would change our perspective on things if he can get out there and get stimiluted away from home. In any event, we refuse to allow negative thinking on our part and Lucas's smile and ability to laugh at most things helps us greatly. With all of the support in our community, the down days are very few and we look forward.
Thank you to Mrs. Crompton, the teachers and students at Lower Macungie Middle School in Pennsylvania for holding the fundraiser volleyball tournament for Lucas and sending us T-shirts with his picture. We also want to mention that New Jersy Natural Gas has given us a great deal with converting our new home to gas and with installing the a/c, heat, hot water and converting the fireplace to gas. Lawes Coal Co. removed our oil tank for free on Wed. and Marpal Disposal came by to take away the dumpster which was also free. So many generous people have helped us and we hope that many of you can stop by and see Lucas's smile and hear his laugh in person. We have another hectic week ahead of us, but everything we do for Lucas and Abby is well worth our energies. Godspeed!
Monday, June 16, 2003 10:11 AM CDT
HAPPY BELATED FATHER'S DAY!
Lucas had an average week. Bill Dengler came over for Lucas and Dad's usual haircut. It was difficult giving Lucas a haircut, but keeping it buzzed allows Mom to apply the proper ointments and soaps to keep his scalp moist. He had limited amounts of gagging, but more than we had expected since switching his feedings. The few times we leave the house and go for a walk, we have to be prepared for such episodes and carry the necessary supplies with us. We continue to try and feed him sherbert, pasta and shrimp, but he eats very little or just a few bites. With the warmer weather here, the rubber coating on his G tube gets stuck to his body and he has been pulling on it with his right hand. We are now considering having a "peg" put in to replace it. The tube is easier to work with, but it doesn't allow us to put him on his tummy. The peg will accomplish that and he can't grab at it either. He has been laughing outside watching the kids throw water balloons and using the water pistols. Abby squirted him yesterday and he was loving it. He watches the kids run around having fun and we can only wonder how he really feels underneath that smile.
We have been extremely busy packing and doing our part to finish what we can in the new house. It is coming along fine and Lucas's Uncle Russell has been putting the finishing touches on the owls and Dobby from Harry Potter. The floors get done this week and the oil tank comes out. Knowing that we have our hands full and haven't had a break since last year, Doug Glassmacher has checked in daily and stopped by to make sure we'll be ready by 6/28. He and Kevin O'Malley made room in dumpster and managed to lift the old washer and dryer up and over into the dumpster. It is filled and thanks to Nick Hubbard and the Little Silver Fire Department and the Fire Cadets, they took down the old small house in the backyard and removed all debris. Nick also informed me that the day we move in, the fire truck will come over and transport Lucas and Abby to our new home. Lucas couldn't have been happier. The many volunteers and businesses that have helped Lucas must know how truly gracious and humbled you have made us. We won't forget and respect all of your sacrifices. And, some of our friends who have been there for us the last several months we also honor. Some of our friends have managed to help us while having their own situations to deal with.
With Dad trying to get work done and Mom working very hard with our family, we are counting the days to when we move in and can try and shoot for some facsimile of normal daily life. We haven't forgotten our Ronald McDonald House friends as we do check in on the websites on occassion, but we plan to write once we're in our new home. The few minutes Mom and Dad get late at night to sit have a cup of tea or beer for Dad allows us to talk. The other night we both said "remember when Lucas couldn't sleep, he'd come downstairs and slowly turn the corner saying he can't sleep. Dad would say come on the couch for snuggy time and he'd run onto the couch and watch TV snugling with Dad." Godspeed!
Sunday, June 8, 2003 3:41 PM CDT
For the past week, Lucas has been receiving his feedings through his G tube by monitor. Most of his nourishment comes at night time and we have seen the gagging slow down. On occassion he does gag, but far from the pace prior to putting him on the automatic monitor. Dr. Krivit contacted us after receiving the blood samples and Lucas is doing very well with his transplant. He had his normal visit to Hackensack on Thursday. Early in the morning we met with the surgeons, PT and nurse specialist. They concluded that the surgery to loosen his tendons would be too risky. It would take approximately 6 hours and that risk of infection after inserting the pins would be great. The length of anesthesia could do more neurological damage and it is not worth it. We were more optimistic the night before and unfortunately we have to accept that we probably can't do anything to straighten out his feet. The only course of action was to schedule another surgical procedure for Botox injections on July 12. We hold out hope and keep optimistic for some good news and then to hear we can't do anything for his little body takes us to another level of acceptance that the disease is so miserable and that we are at the mercy of its unpredictable direction.
If the Botox, Baclofen and Valium combination can keep him comfortable and keep the spasms away, then we'll accept that as the best for Lucas and continue our job as caring for him and keeping him smiling. Abby does a great job of keeping him smiling and Lucas enjoys it. Last week, Lucas's scalp and body was getting very dry and flaky and Dr. Gillio looked at him on Thursday and told us that it is a form of Graph vs Host Disease, but nothing to worry about. We have to apply some 1 ortizone cream and special creams and shampoos to battle it. They will see him in 2 weeks and see if it has progressed or stopped. We check daily for rashes or any other unusual marks. He is resting and we are anxious to get him into the new home. He is getting heavier and harder to get up and down the stairs. His friends continue to visit and spend some nice quality time with him.
Our new home is moving along as CRS Construction (Chris) installed the kitchen cabinets in one day with his crew and our volunteers from the Peninsula Soccer Club, Little Silver Firehouse and Men's Softball League with other friends and volunteers in town have helped get the floor prepared and with other painting and with a big push in getting us closer to moving in. Pete from PG Design and Tom from Ye Olde Pie Shop spent Sunday installing the kitchen floor and trim. The kitchen is nearly done and it will make things easier for us and Lucas. We move in June 21 and aside from a small amount of painting, the kitchen has to be finalized, floors sanded and stained, and carpet installed. New Jersey Natural Gas is coming in to run gas to the house and we were informed that they are planning to help with the heating/cooling, hot water heat & fireplace in some capacity. So much has been done for Lucas and we deeply appreciate everyone's hard work and dedication. We are planning to have a big thank you party after we move in and we want everyone who has helped us the last several months and especially with the house to stop by and see what they have accomplished for Lucas and to see his big smile.
One last note, we ask that everyone continue to think about our friends from the Ronald McDonald House in your prayers. Godspeed!
Sunday, June 1, 2003 11:00 AM CDT
We've settled into weekly updates due to time constraints.
Lucas had an overall comfortable week. Aside from the gagging spells here and there he has been resting better. He had an appointment on Wed. with Dr. Jession at Hackensack. She performed the procedure for his G Tube and his Fundalplycation(spelling guess! and this procedure tied his stomach to prevent vomiting). She has recommended with a consult from the Dietician that Lucas be put on the pump/monitor for his feedings and that he receive most of nourishment over night. We no longer have to pour the formula manually down the syringe. They felt he was receiving too much at once during the day. So far, so good with the pump, except he received another dose of Bactrum on Sat. and starting to gag again.
His skin is very dry and his hair has a lot of flaking. He has a slight rash on his stomach and we must monitor it closely to make sure it is not Graph Versus Host Disease. We have different oitments and constantly apply them to battle the dry skin and scalp. We go back again to Hackensack on June 5 for his consult concerning his tendon surgery on his right elbow and both ankles. A decision will be made concerning the benefits against the use of more anesthesia and risk of additional mental deterioration. Abby had 104 fever and vomiting since Wednesday nite and we've had to keep her away from Lucas. She's doing better today. Abby has her recital next Saturday and Mom is looking forward to getting out to see that.
On Friday, we sold our house. Surprisingly, a woman from North Jersey came with a realtor to look at a house on the top of the block and saw our sign. They came down as Dad was leaving to work on the new house and asked to come in. She liked it and made an offer and we were extremely thrilled that we came to terms. A big load off our shoulders. We close in 28 days. We have many volunteers helping at the new house. The Little Silver Fire Dept. worked with the electrician, plus they have helped paint and remove all of the debri and will be putting in the ramp, the Peninsula Soccer Club came to bang out much painting, our friends and some with their kids here in town have come to paint, remove carpet, staples and debri, Doug had his neighbor come to do the plumbing, Lowy's Moving is sending a truck & 3 guys for free, Marpal Disposal donated the dumpster, Lawes is donating their services to remove the oil tank, Atlantic Coast Drywall (Phil) did the entire kitchen and now Hugh and Doug can begin installing the cabinets and flooring. We have been keeping track of the volunteers and when we are done we will mention names of everyone who stopped by as best as we can.
On Saturday, the Gethsemane Lutheran Church, Keyport, NJ and Good News Christian Preschool held a spaghetti dinner for Lucas and raised a considerable amount of money including the "Lollipops for Lucas" campaign. Many volunteers at the church put in a lot of time and energy to make the supper a success. Diane and Bob Collier secured $500 in vouchers from their employer ShopRite. Thank you for a great meal and all of your help. Good News Preschool was where Lucas went for his 2 years of preschool and they helped give Lucas a great start. The doctors in Minnesota said that Lucas's onset probably started slowly around 3 years old and their dedication back then in persevering with Lucas helped find his niche even with this disease progressing.
We know many people are still helping and contributing to help Lucas and we can only mention a few names at this time. We are anxious to get him into the new house so that he doesn't have to be upstairs anymore and his daily life can be with us all day long. For many of our RMH friends, we constantly think of you. Also, for some reason, we have been unable to access any other Caringbridge sites except for our own. We will write caringbridge to see why and usually it has something to do with AOL. Thank you everyone for helping Lucas and easing the burdens of our hectic days. Godspeed!
Sunday, May 25, 2003 10:08 AM CDT
This is the longest we've gone without an update. It's been a tiring week getting our new house cleaned, primed, etc., for the pro's to come in and finish up. We are receiving a tremendous amount of support and help from family, friends and our community. We hope the bulk of the work is done by next week's end.
Lucas has had some ups and downs. Overall he has been about the same as before. The usual spasms here and there and the choking/gagging. Last week he had a few nights where the choking went on for about every 1.5 hours. It may be tied into one of his medications, but the game plan is to start weaning him off his bactrum first and then so and so on. We try to keep him comfortable as best as we can. He is allowing us to move him back and forth with no moaning on his part. He had about 4 PT visits this week and they went well. On Tuesday he was seen by the BMT specialist and Dr. Thompson and he had Music Therapy sessons. His counts are doing fine and now there is talk of another surgical procedure to loosen his tendons in his arm and ankle. We go back up on June 5 for the consult and normal visit to see if he will benefit from the procedure and they want to see if another bout of Anesthesia will not be to damaging.
They now have to draw blood from his arm as his port catheter in his chest is not pumping out enough blood and he did OK with it. Dr. Krivit called us for the first time on Monday and we were surprised to learn that he was waiting for us in his office for a 9:00 visit. We thought the hospital was keeping him in the loop with Lucas's condition but apparently they weren't and he said he never got a message from the doctors that we weren't going back to Minnesota. Basically, Lucas can't travel and there is no way we'd put him through an airplane ride. Dr. Krivit wanted some blood drawn and sent to Dr. Wenger for his analysis. They said they'd keep him up to date with Lucas's treatment, etc.
The weather has been miserable here and with the constant drizzle, it's hard to get him outside. We are putting our efforts into the new home so that we can get him in and on one level ASAP. Once again, thank you for checking in on Lucas and supporting our family. Godspeed!
Sunday, May 18, 2003 4:32 PM CDT
Lucas continues to have more ups than downs. We lowered his Baclofen and he went right back to his spasms. He had a small temperature when the spasms came on as he tightens up when they come on and he gets real restless. Not high enough temps to get him to the ER.
For Lucas's birthday, we got him some take out from Red Lobster and he devoured 9 shrimp. (Scampi, Beer Battered and Lemon). He manages to eat some of the time and it really depends on his energy and the type of day he had. He gets his usual five feedings a day through his G Tube. He has nice visits from his friends and we encourage everyone to call and stop by to see him. We took him to his first soccer game today and he watched his friends on the U-9 Peninsula Soccer Team win 4-2. The boys came over to Lucas and said hello and he was real happy. Lucas has some really terrific friends and we know it is hard for them to see Lucas the way he is and we know they remember how Lucas was, but they really help Lucas' spirits when he is with his friends.
We want to try and begin to say some thank yous and give recognition for everyone who has sacrificed to make Lucas's life more comfortable. We apologize if we miss a name or two.
On Friday, the Little Silver Youth Athletic Assoc. held their annual golf outing in the drizzly Nor'easter to benefit Lucas. Thank you to Jerry Keane and Gary Costello for your efforts and work and for inviting Dad for some good food that nite.
Our new house closed on Wednesday and we couldn't have done it without the help of Jeff Gale and Nick West from the Peninsula Soccer Club. Also thank you to Dr. & Mrs. Wurmser and Dr. Orlacchio for your extremely gracious help. We have been their everyday working past midnight. The Little Silver Fire Dept headed by Nick Hubbard was there with our friends at the Peninsula Soccer Club headed by Doug Glassmacher to rip out the kitchen. Doug has been coordinating the renovations and material with Chris Scharmann. Doug also pays our medical bills with The Lucas Fund monies. The only problem we saw with the house apart from the dirty smelly carpets and hardwood floors was that the kitchen was too old and inaccessible by wheelchair. It was awesome to watch the firemen and friends and their kids ripping the kitchen out. Many volunteers are lending their skills and craft to help us. The house will allow Dad to still work from home. Lucas has a big smile when we tell him Daddy is working next to his bedroom and will be able to wheel him to the kitchen and family room.
Thank you to Lucas's future aunt Karen for having JK Rowling write to Lucas and sending her favorite owl Oswald from Edinburgh, Scotland. Also, all of our close friends who have done so much for Lucas and us, we are eternally grateful and there are a lot of names. Forgive us for not listing everyone's name.
Mom is tireless in taking care of Lucas, as she pulls the brunt of the work as Dad is over at the house and trying to make a living. Abby is helping Lucas out tremendously and spending considerable time with him and loving baseball. Lucas did say one word the other nite. Dad's zipper got stuck and he was struggling to make it to the bathroom and Lucas was laughing out loud. Mom asked him (@ 1:00 in the morning) is that funny and he replied groggy and slowly "Yes." We were very excited. With the support and love Lucas has received, we get a sense that Lucas's battle with MLD has been an extension of God's reach to bring out the best in so many people. We know many are still very saddened and distraught when they read about or physically see Lucas, but he still is a happy kid above all. Lucas and us know many of you have been so good to him and care for him and only God can make that happen. Children and helping others are the greatest gifts He gives us. Godspeed!
Tuesday, May 13, 2003 8:29 AM CDT
HAPPY BIRTHDAY LUCAS! (9 YEARS OLD )
It was 9 years ago today, on Friday the 13th that Lucas came into this world. He was born in a very severe hail storm, the likes not seen since then around here. He was born with a smile and as of 20 seconds ago he is still smiling. He continues to be a happy smiling kid right through his choking and spasms and everything he has gone through. We spent the night going over stories of things he has done in the past and we laughed. Laughter is a cornerstone in our household and although we allow ourselves a few minutes of feeling a little down, just about all the time we spend keeping him laughing. If we ever changed our way of life, he could sense it and who'd know what that would do to him.
One hour after our Saturday update, Dad took Lucas for a walk and he began to have the shakes and spasms. We got Lucas home asap and got some valium into him to settle him down. Normally we carry our syringe with us to vent his stomach, but we didn't anticipate the spasms. He had a nice mother's day and ate 2 pieces of bread. He eats certain times and soft food. Salmon is nice and soft and he enjoys it. Last night at 3:00 in the morning, we heard a different noise from his room; a sound we hadn't heard before. We ran into find that Lucas had his legs over the side of bed and with his back perched on the edge. We said to him how did you get there and he laughed. That is the most movement by him to date and quite honestly it surprised and thrilled us. We let him know how happy it made us and encouraged him to keep trying and trying to move. We had to go downstairs and get his siderails for the bed and we can't explain how hopeful it makes us feel to know that he moved out of the position that we had left him in to sleep. We prop him up each night on a different side and he always wakes up in the same position.
He is not giving in for a second. He wants to be where we are and try to hold onto things. His left arm still doesn't move, but maybe that is next. He enjoys it when other children and friends visit and come up to see him. He has been smiling to know that the Cubs are off to a great start. He said back in November that the Cubs will beat the Yanks for the World Series and maybe Lucas will bring his magic to them this year. We hope to see a game when they come to NY or Philly. Along side his bed he keeps his Yu-gi-oh figures and all of his other sports items that encourage him. Mom and Dad's daily dream is that one day soon a cure for MLD will be found for all of the kids and allow our children a better chance. Our friends the Trimpers in Michigan are waging a major effort to get more awareness for MLD and we support them. We hope that somebody can take notice and maybe they'll have the opportunity to learn about Nathan Fleming's relentless battle.
We have to get our homelife more situated here with our house, etc. and then hopefully we can find more energy to give our efforts to fighting MLD. We hope everyone had as best a Mother's Day as possible and thank you for all of the support for Lucas and our family. Godspeed!
Saturday, May 10, 2003 12:08 AM CDT
Happy Mother's Day!
We have been seeing Lucas's spirits gradually increase and his awareness stay steady. The Botox has definely made a difference in easing his stiffness. He still cannot hold his head up, but little things like sucking through a straw and eating salmon (shrimp, lobster, all the same to him) and pasta have improved. He had his visit at Hackensack on Wednesday and his counts were good and Dr. Thompson was very happy with Lucas's tone and strength. He still cannot move his left arm and hand and he needs our assistance to move them. He can slightly lift his right leg up an inch and he can move his right arm towards an object and he tries to snap his fingers. He still experiences many bouts of gagging/choking all hours of the day and they are still trying to determine exactly what the cause is. While lying down he does move his head slowly from side to side, but when he sits up we must hold his head up for about 1/2 the time. He smiles more and we encourage family and friends to stop by and visit. When we tell him visitors are coming, he perks up and smiles. He enjoys his friends coming over. We just have to make sure no one is sick, other than that please stop by.
Things have been hectic with trying to close on the new home and having realtors stop by to show our current home. So many have contributed their time, energy and money to help with the transition. Abby has been very busy with school, gymnastics, ballet and baseball. Dad enjoys coaching with Abby and Lucas's team and the kids often ask about Lucas and wonder when he'll be back at school and on the field. The only answer to give is to say "some day." Mom hasn't had a rest and usually gets up with Lucas with his early morning gagging attacks.
We want to wish Happy Mother's day to all the Mom's, especially to all of the Mom's we met at the Ronald McDonald House. We pray for the RMH kids and their families. Thank you for checking out Lucas's Website. Godspeed!
New Pictures in Gallery and additional link below
Tuesday, May 6, 2003 9:21 PM CDT
New Photo's
Lucas continues to stay looser and easier to get around in his new handicap stroller and maneuver around for changing him. The stroller helps keep his head up better and he likes getting outside. Day by day we keep him comfortable and talk a lot to him. On Sunday he dressed in his baseball socks, pants and team Diamondback uniform and we walked him up town in the baseball parade with his friends and teammates. His friends were happy to see him and gathered around him when he arrived. He was extremely thrilled to see everyone too. The first ceremonial baseball was thrown out by Mayor Castleman to Dad and the signed ball by his friends was given to Lucas. He tried very hard to raise his hand and with Dad's help he openned his fingers and held onto the ball. It was a great day for Lucas and our family.
Tomorrow he has two appointments at Hackensack. He had visits from PT and Speech today, although he slept through speech. Mrs. Straus is going to try to determine some alternative method of communication for Lucas. Something he can point at for his response. The therapies definitely help him keep the disease from tightening him up to much.
Godspeed!
Saturday, May 3, 2003 12:50 AM CDT
Before we update about Lucas, we'd like to make mention to our family, friends and community who check in on Lucas's condition, that we sometimes mention about our friends that we met at the Ronald McDonald House in Minneapolis. A day does not go by in our household that we don't think about the families and children we met and cared about. They gave us strength and hope to get by each day. It is amazing that so much courage and determination could be found at the RMH. Some of our dearest friends continue to fight on and some have gone to heaven. When we learn that one of the kids has passed on, it hits us very hard. These were bonds that last forever. Although our days with Lucas are very busy and long, we still think about the bravest of children and families we met at RMH.
Lucas has been gradually getting looser and a bit better to move and get around. The main complication each day and night is his battle with choking which is caused by one of the medications. He is never left unattended by us. We just got a new handicap stroller and it fits him well. We went for a few walks in the neiborhood and he seems to like getting out of the house. We continue the strict regiment with his medications, massaging and feedings through his tube. Things are gradually becoming very routine for us with Lucas. We try to keep him out of bed as much as he'll withstand to avoid him from getting any sores on his body. He has moments of non-responsiveness to our talking and we wonder where he had zoned out to. But he is somewhat cognitive. Abby reads to him daily and spends a lot of time with him. We hope to gradually have more family and friends visit him as it truly does pick up his spirits.
We go to Hackensack this Wednesday for his checkup and hope that his counts stay up there. He has a few appointments and we are in the process of scheduling another procedure to have his G Tube replaced with a Peg so that he doesn't have the 9 inch tube hanging out. We'll access his Peg for his feedings and medications. He still has his port catheter in his chest and that is accessed for his blood work.
Tomorrow, Lucas and Abby (Kindergarten T-Ball) will be in the Little Silver Baseball Parade. We were informed that the ceremonial first pitch will be thrown to Dad and the ball given to Lucas and one for Abby. Abby was wonderful in her school play yesterday and remembered her lines. She enjoys baseball and just getting out there. We hope to start taking Lucas to ball games and a few soccer matches. A lot of work and planning is to going into setting up our new home for Lucas and we can never truly show how much we appreciate the dedicated work here in town. Godspeed!
Monday, April 28, 2003 7:22 PM CDT
We wanted to wait several days since our last update to see if the Botox would kick in for Lucas. It took longer than they had expected, but with the combination of upping the Baclofen, he is much looser. We have been able to bend his knees more the last few days than the last 2 months. How long will the Botox last? Nobody really knows. For now, he is resting much more comfortably and with the handicap stroller we were lent and with the Tumble Form (foam seat) insert, he can now sit up better. Today, we used the Tumble Form in the van and went for a ride down to the Sea Bright boardwalk and we sat with Lucas for 45 minutes. It is easier getting him into the van and we are able to prop his head up with a homemade foam donut. His neck is still very weak and he needs support to keep his head up.
Our insurance cut Lucas off for much needed therapy, but we have been given a big break with lots of help from some local physical therapists for Lucas. They told us that our massaging his legs, joints and keeping him up have helped the Botox process. They are showing techniques and how to be careful with him. Lucas still has Osteoperosis and we must be careful not to break any bones while exercising him and just moving him. He still can't talk and chances are that will never come back. Just getting Lucas to bend more is a major step for him and us and we now realize that he'll probably never gain his ability to walk again, however, like Ivory Soap, we are still not 100% convinced given Lucas's willpower and God's power. He gives us hope by his ability to slightly hold a cracker or a beany baby.
At our last visit to the BMT clinic at Hackensack, his blood counts were still good. Dr. Krivit told us that his goal was to slow down the cognitive decline for Lucas and it appears Lucas still understands us and can laugh at funny jokes and videos some of the time. As for the physical deterioration, Dr. Krivit had estimated that if he had a successful BMT in Lucas's situation, he'd start losing gross/fine motor skills, talking & walking by his teens. Unfortunately, he lost all physical abilities within 3 months of transplant. It is very difficult to qualify the BMT as a success if Lucas has lost so much so soon. He relies on his feeding tube for his nourishment and for us to bath him each morning and clean his mouth with foam swabs. This is why the last few days have been uplifting, because of the simple fact that he can sit up and we can get him out of the house.
Over the weekend, Lucas and ourselves had uplifting visits from our family and friends. It was great to see his friends sit with him and watch videos in his room. We had a busy weekend with the house with phone calls and people stopping by. Lots of interest, but no takers yet, but we're confident it will move soon. Please pray for our friends and families from the RMH. Thank you Little Silver for your help with our new home! Godspeed!
Wednesday, April 23, 2003 5:59 PM CDT
We are finding that the days go by so fast and we just want to sit down and relax and write emails or make phone calls, but it just doesn't happen. We have many return messages to get back to, but the daily grind of working with Lucas, things with the new home, selling our home, keeping him comfortable, etc. wears us down.
Lucas had his Botox injections on Saturday and he had his weekly appointment to Hackensack yesterday. Lucas appears to be a little less stiffer, but after Dr. Thompson examined him he had thought Lucas would be even much less stiffer after 72 hours. He told us to be patient and give it a chance to work its way in. The trauma to the muscles from the deep injections may still be affecting Lucas and it could take longer than what they had expected. He is still feeling some pain and is not as comfortable as we would want. It is very difficult for anyone to give precise information because of the rarity of the disease. We continue to work on his legs and arms and will be starting a more rigid schedule on our own with some help. We must prevent his muscles from stiffening up to the point where we start to hear them talk about cutting his tendons. They don't think that is the answer, but for most stiff joints it works. We just want Lucas to sit more comfortably and experience less pain. The PT's sense he is feeling bouts of pain, but aside from a brief cry, he seems to be dealing with it as best as he can.
Lucas has been given next week off and it looks like he may now be on a biweekly schedule. We have been checking in on our RMH friends websites when we can and have learned of some other courageous little friends who have passed on. We remember their laughter, energy and willpower and feel a sense of lost for their families. It reminds us that we must appreciate each day with Lucas, one at a time, and not look to far ahead. Godspeed!
Saturday, April 19, 2003 11:09 PM CDT
Today we spent the day at Hackensack UMC where Lucas received his Botox injections. We were very fortunate that they got an OR time for him so soon. As we were getting him changed into his gown, he started to cry and it was difficult putting him through the pre-op procedures again and have the anesthesiologist stop by with the routine questions. He knew what was coming. Being wheeled down the hall into the OR was minutes away. This time Dad went with him until he was put under. For the dozens of kids Dad has calmed down and helped into an OR, for his own child it was very difficult and he didn't want to leave his side. Although this 1 hour surgical procedure is what we think will benefit him most, it was still very difficult putting him through it again. He had deep injections into his legs and arms and the holes were just added to the other holes from biopsies, catheters, spinal taps, etc. He came out of it groggy and sore, but by the evening bedtime he seemed better and able to smile again.
Dr. Thompson's goal with the Botox is to allow Lucas to be relaxed more and to make it easier for us to care for him. This is not a sure thing and we pray that we see some relief for him in 48 hours. He feels this could help Lucas cut down on the pain he experiences and hopefully eliminate the spasms. Hopefully he'll be able to sit up more and allow us to take him for walks. It has to work. There is nothing else to do. The disease has progressed much faster than expected for Lucas, but he continues to give us hope by his willpower that something good has to happen for him. Happy Easter! Godspeed !
Thursday, April 17, 2003 12:30 AM CDT
See NEW Photos. Link to other Photos is below.
We want to start by mentioning that the days seem to go by very fast and in the morning we have the best intentions to write and call everyone, but we realize what we were meant to do at about 1:00 in morning for his last feeding. The day
is filled with changing him, massaging him, calming him down during his spasms, meds, feedings, etc. We just had to sit down before his next feed and with Abby in school to update the last few days. We will be responding to everyone over the next several days.
We received a special call last night from Hackensack UMC. They informed us that they have squezzed Lucas in this Saturday for his Botox treatments in the morning. Dr. Thompson received numerous emails and calls that Lucas cannot wait until the middle of May and he must receive them ASAP. They came through and Dr. Mazzolla managed to get OR time for Lucas noon on Saturday. We hope in 2-3 days after the Botox, he'll be more relaxed with less spasms and that it will put his hands and feet back into position so that we can put shoes on him again. The treatment if it works could last for up to 4 months.
For most of the day, Lucas is still very stiff and experiencing very severe spasms and all we can do is sit with him and dry his sweat off. His shirt gets drenched and we have to change it. Because his arms are so tight, it's hard to remove and put on any shirt. With the weather getting warmer, it is easier to put on shorts and T-shirts. He has however responded very well to Dad holding him. Last night was also another encouraging sign. Lucas took hold of a Matza and begin taking small bites on his own. After the first few on his own, he needed a little help because he couldn't bring his arm up to his mouth and it shakes a lot. We hope if the Botox relaxes his muscles, he'll be able to try a little shrimp/lobster again.
We have had Lucas outside for the last few days, but today is too cold and damp. The plans are starting to take shape with the new house and the ideas to make the home easier to get Lucas around are on the table. Many volunteers and friends are working to help make the transition smoother. We have had a few people come by and look at our house, but the feedback from a few realtors has been that people can't see beyond the clutter and it would helpful if we stored some things to make the home look bigger. With strollers, wheelchairs, boxes from Minnesota, storage bins of medical supplies and boxes of formula, we have no choice at this time and will have to wait until we move.
Our daily thoughts and prayers are with all of our RMH friends and families. Godspeed! (Happy Passover & Happy Easter)
Monday, April 14, 2003 4:17 PM CDT
In an attempt to cut down on the valium, Lucas experienced severe spasms and pain. We tried to adjust the valium up a little, but he had more spasms and some lasted up to 3 hours. We stayed with him right through them and kept him cool with wet rags as he was perspiring heavily and his shirt was drenched. There isn't much we can do until his next dose. He would settle down and get quiet once the next dose came. Dr. Thompson told us to keep the valium the same until he sees Lucas tomorrow.
We had Lucas outside Saturday for a short walk in the chair and on Sunday and today Dad held him outside. The only way we comforted him durng the spasms was for Dad to hold him. He has done better downstairs on the couch. He is still very stiff and holding his hands tight on his chest. It is very difficult picking him up as his arms just don't bend, but he seems to like being held. His hair is coming back in over places he never had hair before. His forehead and the back of his neck. It is black. He goes back to clinic tomorrow and we hope to find out some news about his wheelchair. We think he'll find the energy and strength to get outside and go watch his friends at soccer and baseball. Dad is practically done with tax season and now we can concentrate on keeping him occupied with other things than videos and Mom's reading stories. He battles through the spasms, cries for a few seconds and then battles on again. We have gotten used to seeing Lucas fight through the pain and bounce back. Godspeed!
Friday, April 11, 2003 5:19 PM CDT
Since Monday, Lucas has been not as stiff with the increase in his Baclofen. He will probably be going into surgery in a few weeks to have a pump implanted for a constant dosage of Baclofen. His BMT visit on Tuesday went well and he had visits this week from the school OT and PT to conduct their evaluations.
Overall, Lucas rests in bed with virtually no movement, but he is resting more comfortably. We have been bringing him downstairs to sit in his wheelchair and to watch the afternoon cartoons. We hope for a sunny, warmer day to get him outside. He enjoys watching Yu-gi-oh in the afternoon. Mom has been crunching a KitKat bar in a bag and he has been eating a bit. He still has bouts of gagging/choking and we have to get the syringe, open his G tube and let his system air out. He allows us to change him and on a few occasions we may move him in a way he doesn't like and may cry for about 20 seconds then stop. Abby has been a burst of energy for Lucas and she reads to him and keeps him occupied. He is seldom alone in his room and we spend 95% of the time with him. With Dad wrapping up work on Monday, we hope to spend each day outside and keeping him mentally stimulated. Each day that goes by, we think of our friends we met at RMH and pray for their strength and healing and we also count our blessings to have so many people supporting Lucas and our day to day grind to take care of him. Godspeed!
Monday, April 7, 2003 8:01 PM CDT
Additional Pictures from PA Fundraiser at link below.
Thank you to all of our relatives back in PA and western NJ for all of your dedicated work with the extremely successful fundraiser yesterday. A special thanks to our cousin Michelle (a Longaberger basket consultant) who brainstormed the whole idea and put in a lot of time to pull it off with the help of our other relatives and family. The importance of such hard work leaves us without words to describe how much we appreciate it. We continually throw the hospital bills and EOB's in a big box and are starting to receive word about items the insurance company won't cover that Lucas desperately needs.
Lucas has had more ups than downs the last few days. He was up last night gagging/choking several times and we don't know why. He had speach today from school, but it didn't last long. Lucas didn't communicate with his eyes or hands and seemed very tired, and he was also not very responsive even with his favorite teacher. This persisted until early evening when he came downstairs again and he was smiling more. We believe when he is tired, he is real tired and nothing will get him to respond. The increase of the baclofen has definitely eased his stiffness and allowed him to rest better. He is sitting up in his wheelchair better and able to move his head slightly. Very slow improvement, but in the right direction.
Lucas has BMT clinic tomorrow and PT in Hackensack. It is a slow process and long days staying with him, but we believe something positive is in the works. He seems content in some way. Mom and Dad sense that he is somehow accepting his limitations. Lucas had to fight so much harder to learn and keep up on the playground. The only thing that came natural to him was his contagious laugh and silliness. We think the stress and pressure from battling this unknown disease and trying to learn at the same time and to try to keep up with other kids whether biking, sports, etc. is no longer on his shoulders. The frustrations MLD had caused him are gone. It is almost as if he is telling us the last few days that as long as I'm not that stiff, I'm doing OK. FLASH! JUST IN FROM MOM! Lucas just pressed the Fart Button on the Fart Machine! (with a little help) Great News!
We again thank everyone for your support and caring for Lucas. He is doing the best he can to get by. Godspeed!
Saturday, April 5, 2003 7:42 PM CST
For the last few days, we have been slowly bending Lucas's arms and legs throughout the day. We had felt that the tightness was now surpassing the Baclofen dosage. Dr. Thompson called us back Friday and told us to increase the dosage to 25 ml and for the time being we have seen Lucas relax a little easier and smile a bit more. We can only go so far with the increases and if the tightness doesn't slow down, we will be unable to increase the dosage for fear of causing other severe side effects. It takes a lot of coaxing to get him to laugh and usually Abby steps up for that. Abby was making him smile with the new "remote control fart machine" that our friends here in Little Silver got for him. This way he doesn't have to wait for the phone to ring.
The last few days, we were able to carry Lucas downstairs more easily by Dad holding him with his head resting on Dad's shoulder. We had to wrap our arms under his neck and legs to move him because of his severe stiffness, but even though it isn't that easy, we can move him better. We put him into his wheelchair at 5:30 and he sat until 8:15 which was totally unexpected. Earlier in the day he sat for 1 hour which was more than double his previous best sitting. Although he cannot hold his head up, we hope he will regain some control soon. Just to get him out of bed and down to the living room to watch real cartoons is incredible. We are still wary of any infection and pray he doesn't come down with anything again. We know the disease in Lucas has progressed much faster than anticipated. We were advised of certain digressions he would experience, but not within 3 months of transplant. We pray that the disease can now stablilize and not do anymore damage to him.
Tomorrow, Mom and Abby will be attending our family fundraiser for Lucas in Pennsylvania. A lot of work has gone into it by our relatives and we greatly appreciate the help. Once again, the support and prayers from everyone has helped us get through the long days and concentrate on keeping Lucas comfortable. Godspeed!
Thursday, April 3, 2003 3:48 PM CST
It is with the deepest regret and sympathy that we inform everyone that one of the most courageous teenagers that we were privileged to meet has passed on. Our dear friend Nathan, from Texas, passed away Tuesday evening after battling complications associated with the Bone Marrow Transplant he had for his MLD. Nathan and his mom Rhonda, were our "Mentors" when we went to Minneapolis back in October to meet with Dr. Krivit. Lucas took a fast liking to Nathan and Nathan was so generous to show Lucas his Hickman catheter and let him know that some things will hurt, but as long as he stays strong, he'd get by just fine. We came to rely on Rhonda's advise on what to expect with the BMT and how Dr. Krivit dealt with situations. Lucas looked up to Nathan and thought he was such a funny kid. Nathan wore shirts with very unusual sayings and if you were to view his website www.caringbridge.org/tx/nathan and view the pictures, you'd see what we meant. We are indebted to them for how they helped us and Lucas and we will miss Nathan.
Lucas has been experiencing bouts of tightness and stiffness and Dr. Thompson told Mom to up his Baclofen. We started giving Lucas Prilosec and hope in a few days this kicks in to help with the reflux. Lucas has extra tightness at about the time his medicine is slacking off. He gets so stiff and shakey, that he gets beads of sweat on his head. We are starting to get his Speach, PT and OT organized through school for now. We constantly massage his joints and try to get him to smile. He mostly rests quietly and we hope that the stiffness loosens up so that we can get him outside in his wheelchair. We take it one day at a time and hope for improvement. Godspeed!
Tuesday, April 1, 2003 5:19 PM CST
Lucas continues to be quiet and experiencing bouts of stiffness and small spasms. Last night he worked very hard to give Mom a high five and he at least made the attempt to get his left hand to hers. His feedings are still going on as scheduled. Overall, Lucas lays in bed quietly, doesn't show much emotion and follows us around with his eyes.
Today he had his first outpatient appointment in the Hackensack BMT and lifted his hand as best as he could to give Dr. Thompson a high five. We could not get him into his car seat due to his stiffness, so Mom laid him down on the middle seat with his head on her lap. He just cannot bend his legs to sit. His feet are still very clubed. They said today at the clinic that they are going to try Botox injections in 2 weeks and they also upped his Baclofen to 20ml. He had a physical therapy session today with some basic stretching his legs. He did sit up for about 30 minutes, but this takes a lot out of him. He is very difficult to transport and carry and we hope this stiffness will ease up. We don't know when he'll ever eat again, but the feedings are helping. He is taking Prilosac for the burping and reflux. We rub him with Acquaphor twice a day and turn him often so that he is not on one side too long.
We continue ask everyone to say a prayer for our young friend Nathan (www.caringbridge.org/tx/nathan) and his family as he fights on in Texas. Godspeed!
Sunday, March 30, 2003 1:13 PM CST
Lucas is resting quietly in his own bed. Mom and Dad have been working as a team for changing him and dressing him. He cannot control his head and it does make it difficult when trying to get his pajama shirt on. Changing his diapers is going smoother and he doesn't fuss anymore while we do it. He is letting us move him around without crying. His body is still stiff, although not quite as stiff as 3 weeks ago. We have had him downstairs 3 times and trying to keep him sitting up more on his handicap chair, although he doesn't last more than 20-25 minutes sitting. We keep hoping the Baclofen will ease the tension more and more in his body.
He is smiling on occasion, but still unable to talk. He seems content just resting in bed and watching videos. We read many books to him and massage his body often. His arms are still pulled up under his chest. Mom has been keeping his regular feedings up at every 3 hours and the only problem we have during them is his reflux. Sometimes he develops reflux during the feedings and the solution backs up in the tube. We have to hold the tube up in the air and let the gravity take the solution to his belly. The feedings can last about 15 minutes each. He gurgles and burps for the next 30 minutes. To what extent he knows of his physical limitations is unclear. He is just very quiet and resting much better since the spasms have subsided.
We have an appointment this Tuesday back in Hackensack with the BMT unit. We hope he can manage in a car for 2 1/2 hours of driving that day. We enjoy every minute with him and continually talk to him and keep his attention as best as we can. Abby is her same busy body demanding self, but more considerate of her brother and spending time with him. As we try to get into a routine with home life and Dad tries to keep up with his busy work until April 15, we are looking forward in a few weeks to spending even more time together and keeping Lucas's mind more active and stimulated. God Bless all of our RMH family and everyone who has supported Lucas. Godspeed!
Friday, March 28, 2003 10:16 PM CST
Lucas is back home! (See new picture)
He had more smiles today than any day of recent memory. He watched his Yu-gi-oh tapes as we crawled home down the Garden State Parkway in stop and go rush hour traffic for 40 miles. He didn't sit as comfortably as we would have liked in his new car seat and he started to get uneasy the last 10 minutes. We carried him up to his bedroom and got him settled in. He is very weak and cannot hold his head up. He had excellent care once again in the hospital. Just like everyone back at Fairview UMC in Minneapolis, the staff at Hackensack was excellent. We have been very fortunate for the last 4 months to have had such incredible care.
He is resting comfortably in his own hospital bed and Mom is back to giving him his feedings and medicines. Abby has been talking a mile a minute and we predict that the first words out of Lucas's mouth will be "shut up." He has smiled several times just watching his sister. We have a lot of faith that he will fight on and that he will talk someday and even get out of bed and stand up. Faith and a positive attitude are our daily bread. We have been reading our emails and web postings and hope to find time to write back. The support and prayers give us the energy to take care of our family and keep Lucas smiling. We have been blessed with so many supportive family, friends and community.
One last note, Lucas smiled when he received a special package from London - one of the official soccer balls used in the championship game in the Premiere English Soccer Leage between Liverpool and Manchester United and an autographed uniform. We thank our friends back in England and the Manchester United Soccer Club for adopting Lucas as one of their best supporters across the pond. Godspeed!
Thursday, March 27, 2003 6:00 PM CST
New Picture Friday
Brief update. Lucas is coming home tomorrow afternoon from Hackensack UMC. His feedings have increased enough that they feel he can leave. He is receiving steady doses of Beclofan and he is doing a little bit better. We are just anxious to get him home. He is resting quietly. Godspeed!
Tuesday, March 25, 2003 5:53 PM CST
It is looking like Lucas may be able to come home this Sunday. They are gradually increasing his feedings through his tube and are still adjusting his Beclofan to see what dose will work. He is a bit less stiffer in his legs, but remains tight with his arms. The speach therapist saw Lucas this morning and cut her session short. He didn't really respond to anything and she could not give us any news on why is can't talk. Lucas was loose enough to get into a stroller and go for a little ride down the hall. That was something that he couldn't do for the last 2 weeks.
Mom heard from Dr. Gillia from the BMT unit and he said he was happy with all of his blood counts. Dr. Thompson is still monitoring the Beclofan in conjunction with the Valium and is trying to see what works for Lucas. He thinks the Valium could have something to do with his general condition, but he must monitor daily Lucas's condition as he adjusts the medicine. Mom keeps massaging him and reading him stories. The spasms and fever are minimal. We continue to think positive and patiently wait for some good news about his ability to walk and talk. He is still very tired and resting quietly. Godspeed!
Monday, March 24, 2003 7:37 AM CST
Our Lucas has been showing a little emotion and reaction to us the since the last update on Friday. He is receiving his feedings every 3 hours and the Beclofan seems to be kicking in slightly with his legs relaxed a bit more, however, he still pulls his arms into his chest. He has spiked a few low grade fevers and with the the help of them giving him Albuterol through the air mask, he appears to be breathing better and breaking down the mucus in his chest which is going into his stomach being drained by the G tube. The feedings are gradually stretching his stomach as it has shrunk considerably over the last 3 weeks. He is alert and is smiling more. He still rests quietly and doesn't move much, but he is aware of his surroundings. He does not like to be move in bed for either just moving him up the pillows or for changing his diapers, as we don't know if something hurts him or he just doesn't want to move. His hair is coming in slowly over his forehead and it is black, his eyebrowls turned black.
On Sunday, Lucas and Mom received a visit from Dad and Abby. Our time together was priceless and very funny. Abby makes us all laugh. To Mom's shock and Lucas's contagious laugh of old, Dad came into the room wearing a large rented Lobster Costume (See PHOTO Album). He saw it was Dad under the Lobster Head and began laughing. Mom was shocked to know that Dad with Abby's help had put it on in the parking garage and had walked through the hospital to his room. We also came with Yu-Gi-Oh cards and Grandma/Grandpa also brought another Yu-gi-oh video tape and he was happy. We still hope and hang onto our prayers that he will talk again, but for now he was thoroughly happy. Mom got to go with Abby to Jonah's birthday party down the road in Guttenberg while Dad stayed with Lucas.
We continue to think positive and believe that Lucas will come around and talk again. For now, his laughing and smile will do, but we hope he can communicate with words to us. We have to wait and see if the Beclofan will work its wonders and help loosen him up enough to get him into a wheelchair. We continue to receive donations, gifts and incredible support from so many. We are incredibly humbled that so many are helping our Lucas, especially during these tense times for all of us. Please continue to pray for all of our friends at RMH and for those at home battling and for the men and women protecting us! Godspeed!
Friday, March 21, 2003 5:58 PM CST
See New Pictures
Lucas has been resting a bit better the last few days and is getting very good feedings through his G tube. If he can manage, they encourage him to try and eat, although, we do not want to push anything right now. He is still stiff with his upper body and holding his arms under his arm pits tightly, but he has been able to bend his knees slightly. The doctors are discussing putting the Beclofan (spasm and tightness medication) in as a drip so that he gets constant doses. This will require another 1 hour surgical procedure, but may be better for him. They are also discussing the possibility of injecting Botox directly into his feet. His feet are curved like a U and clubbed and they feel this could help the stiffness. He is also starting to laugh a little more and that is the best sign so far. Godspeed!
Wednesday, March 19, 2003 10:22 AM CST
Lucas has been resting quietly. The valium has been keeping the spasms to a minimum. He has vomited a few times since surgery and is still in PICU. Mom has been with him and reading to him. He is not as stiff and tight as was the case over the weekend. The physical therapist at the hospital has been massaging him along with Mom's help. He is still favoring his right side and is watching a little TV. Mom will be learning how to use the G tube today and the proper maintenance of it. He has had visits from both of our families and this has helped Mom get through the day. There is no phone in the room and she has to leave and walk down the hall to call or receive calls.
Today the Doctors are meeting with Mom and discuss a game plan going forward for Lucas. The BMT unit has determined that the ball is in the court of our Neurologist and Orthopedic. They still will monitor his blood count. We are still planning to go back to Minnesota in late May as it is still important for Dr. Krivit and the MLD team to learn from Lucas's progress. We have a tremendous amount of faith in Dr. Thompson at Hackensack UMC that he can help Lucas with the medications. We remain confident and optimistic over the next few days that we'll see improvement. We have learned to have hope in the Doctors caring for Lucas and believe that they are doing their best for our little boy.
Abby continues to stay busy and keep Dad company. Dad is very busy in dealing with tax season and the new home dealings. The days are very busy and he has found it less stressful to work from when Abby goes to bed to about 3:00 in the morning. We are all doing what we have to do to keep Lucas comfortable and to keep Abby and our household moving along. Thanks again to all of our family, friends, students everywhere and our friends at RMH. Dad reads Mom the web postings and emails and we truly appreciate the support. God bless everyone, Lucas and our Troops! Godspeed!
Monday, March 17, 2003 7:33 PM CST
Earlier this afternoon, Lucas was in surgery for 2 hours to have his G feeding tube put in his stomach. There is a ring about the size of a half-dollar with a tube hanging out in the middle of his belly. He was then transferred from recovery to Pediatric ICU. He is very weak and receiving morphine. Mom asked that he continue to receive morphine since he isn't talking and we cannot assess his pain level. We wish we could be reporting better news, but unfortunately things are not going very well for Lucas. His levels have fallen and 2 hours in surgery has not helped. We hope that the feeding tubes can give him well needed nourishment and that whatever he takes in stays down. We can only wait until the next day to see if there is any improvement. Since he has woke up, he hasn't cried and has been a fighter through the day. We feel helpless at this point and must believe that this is the bottom point and he'll slowly improve. We love our Lucas and are so proud of his willpower and toughness. Godspeed!
Saturday, March 15, 2003 10:02 PM CST
The last few days have been very tough on Lucas. Mom and Dad feel that they were much worst than his chemo days. At least back then he could communicate and allow the morphine to give him some rest. Right now Lucas has been experiencing very severe spasms throughout his whole body. His feet are bent and clubbed and his arms are bent along with his hands under his chin. He had a large NG tube put down his nose for suction of mucas and bial out of his stomach and his jerking pulled it out. He had it painfully put back in and that has cut down on the vomiting. Yesterday he had an EEG taht ruled out seizures (spelling?), but didn't answer his spasms. He was up most of Friday night with spasms and high temperature. He is taking valium for the spasms, but it was only lasting up to 2 hours and he had to wait out 2 hours for the next dose. That 2 hours was spent with a high fever and very high heart beat with shortness of breath. He vomited the tylenol. He received oxygen a few times but he could not settle down. He is not crying. His next dose of valium settled him down a few hours again. Very little time for Lucas is spent relaxed and he just can't settle down. Mom and Dad sooth him and hold him and rub his legs and he still shakes right through it.
He cannot talk, cannot eat and is bending his neck to the right and not able to watch TV most of the time. We straighten him up and he folds right back into the same position. He had an Upper GI today to look for problems in the Esophagus, but no results yet. It took 2 hours and he was very restless, however, the barium he had to take through his NG tube didn't cause him to vomit. Dr. Thompson, the Pediatric Neurologist upped his valium and from 3 - 7 p.m. he slept and rested much better. He told us that we have to get Lucas stable before he can start the medicine for his spasms and tightness. He truly believes this can help Lucas and we believe him. The staff at the hospital have been excellent. They have a parents food cart that comes around for each meal with pretty good food for us. Dad and Abby came up on Friday. Mom went home with Abby to get a good nites sleep. Mom for 3 nites and Dad for 1 didn't sleep at all. Just cat naps. Abby was very quiet when she saw Lucas and we felt it was better that she not see her brother that way at this point. She briefly saw him with 27 wires attached to his head for the EEG on her way home with Mom. She cannot understand why her Lukey won't talk and shakes. For many who saw Lucas when he came home and saw a drastic change since November, to see him today is just as big a change since last weekend. His counts are adequate, but we hope this is temporary since the onset of the shingles and that Lucas will come around.
Mom and Dad are starting to see the toll the BMT has taken on Lucas. Yes, he is cognitive, but it has come at a great price. It is very hard for us to see him the way he is right now, and we must believe and be positive that it will change. On Monday, he will undergo surgery for about 2 hours to have a more intrusive feeding tube put in his belly. This will remain for the rest of his life. He'll get his liquids and nourishment through it and if he can eat, that will be a bonus. We hope he'll eat again. We know Red Lobster is hoping too! Lucas isn't laughing anymore and doesn't find anything funny. That is tough to accept as our job has been to constantly make jokes and do whatever it took to make him smile. Next week should tell us if he'll make it back and if we see any progress. We must be strong for Lucas and reassure him that he'll get better soon. The love we have for our son and respect for his tolerance of pain and suffering is limitless. No word or words can describe watching him fight to get through a day. Godspeed!
Thursday, March 13, 2003 3:12 PM CST
Today, Lucas went into surgery to have his G Tube put in and prior to the procedure and while he was under, they went into to scope his esophagus and stomach and to determine if GVHD (graph vs host disease) is present. They wanted to rule it out while conferring with Dr. Krivit. Fortunately, they feel that Lucas may not have GVHD, but we were very disappointed with their findings in any event. They said that the type of G tube, less invasive one, cannot be inserted in Lucas because while examining his esophagus and stomach they saw severe damage. They suspect that is why he hasn't been eating or drinking much lately and he has been vomiting each day this week. His reflux (he has always had it since birth) is creating too much acid and bial in his stomach so they have started giving him a strong antacid and have postponed the G tube. They said they have no choice and must go with the more invasive procedure in putting the G tube in and this will take longer and involves more internal organs. He is very tired and weak, however, Mom said that he is looking less tighter than a few days ago.
He still isn't talking and remains quiet. Mom is right by his side and making due with her small lounge seat for sleeping. Dad and Abby are going to visit Lucas tomorrow and Saturday. He still laughs at funny things and battle right along. We continue to be overwhelmed with support and prayers and ask that you say a prayer for our boy and all of our RMH friends battling right along with Lucas.
Godspeed!
Wednesday, March 12, 2003 10:11 AM CST
New pictures of Lucas!
Lucas and Mom are up in Hackensack Medical Center. Dr. Brochstein in the BMT is in charge. He is very stiff, but the morphine is easing his pain. As in the pictures, he is alert and its looks like he is focused on Nichalodeon. He has managed some laughs and said two words yesterday, his favorite saying from Minnesota "I'm beeping," meaning his monitor is empty or occlusioned.
The pediatric neurologist met with Lucas and read up on MLD. He is of the opinion that they can treat Lucas with Valium and a drup called Beclosan (spasms and stiffness) and feels it can help Lucas. He gave no guarantees, especially the improving of his ability to walk, but he feels it could help him. He was in contact with Dr. Krivit and they agree to give it a shot. On Thursday, Lucas will have his "G" tube put in his stomach. This should help with his fluids and nourishment and will be permanent. He appears to not be having any pain right now, but he'll have another procedure tomorrow. Mom said everyone is very friendly at Hackensack, as was the staff at Monmouth Medical. As we said the other day, Lucas keeps hanging in there and we hoped for something to help him and maybe the neurologist is on to something to help Lucas. You can't look back, there is no reason to.
Dad and Abby are back to their busy routines and anxious to see Lucas and Mom. Thank you for the support and keeping tabs on Lucas. Also, thank you to our friends in RMH for keeping in touch and to our family who reads our friends caringbridge sites. Godspeed!
Monday, March 10, 2003 4:42 PM CST
Where to begin.
Since our last update, Lucas has regressed considerably. He completely lost his appetite, even with 30 jumbo shrimp in front of him. He got completely stiff from head to toe and we could hardly bend him. It appeared he was experiencing severe pain, but he could not communicate it to us.
On Sunday, he had a few bouts of laughing, but he was in pain. We then noticed on his middle chest some blisters and called Dr. Krivit. He immediately said "shingles" and to get him to the ER asap. Arrangements were made by our pediatrician with the pediatric ER deparment and they took him right in. The doctor, having worked in Hackensack BMT confirmed that it was shingles. They said he was exposed to the virus at least 21 days ago. Where and How we'll never know. In any event, he stayed Sunday night in the hospital and they contacted Hackensack Medical Center and Dr. Brockstein. He and Mom were driven by ambulance to Hackensack late morning where he was admitted. Lucas has always tolerated pain, but this time at least there was something visible to make a diagnosis and get him the proper medicines. We use pain charts at home for him to point to, but the last few days he didn't feel like pointing. Dr. Brockstein knows Dr. Krivit and he said he'll get up to snuff with Metachromatic Leukodystrophy real fast.
Dr. Brockstein told Mom that he'll confer with Dr. Krivit first, but he feels that Lucas should have a G tube inserted directly into his stomach for meds, eating and drinking. Three weeks ago, we came to realize that the G tube would probably be needed within a few years for Lucas, but not this fast. A major contributor to his lack of eating and drinking was the tapering off of the pregnozone (steroids) and they are going to start it up again.
We have come to accept many things with Lucas, but Lucas has had to accept more than he should have to handle. He still laughs when you'd think he won't. Watching him battle each day with severe frustrations, pain and realizing he can't walk and talk has made him even quieter. We keep trying to make him forget about it and think of happier things, but deep down he is too intelligent. Our hardest thing to accept is that he is fully aware of the changes to his life and that there is nothing we can do but make him forget about it. Not easy. Mom is very strong willed and incredibly focused on his condition, medications and mind. If any thing positive can come from this in addition to all of the incredible support our family has received is that Lucas has been infinitely "tough" and courageous and a lesson to us all. He does everything we tell him to do and he doesn't complain. He still can lift his arm for his temperature and put his arm out for his blood pressure when asked. He takes his meds by port and pill with no complaint. What he has showed us the last 91 days is a lesson in life and perseverance. Mom, Dad and Abby have become stronger through him and because of him. This is another hurdle that he'll overcome and fight through. Godspeed!
Friday, March 7, 2003 1:33 PM CST
As this crappy winter starts to end, we are looking forward to getting Lucas outdoors. His life right now consists of bed and in his wheelchair to eat. The weather is just not good enough yet to get him outside. Lucas had physical therapy on Thursday and his leftside is extremely stiff. It is now hurting him to stand up and we are not sure if he will regain the ability to walk. He is still very quiet and not talking. We try all day long to get him to talk, but our only success has been to make him laugh. We read books to him and do different things to raise his spirits. We believe he has enjoyed being home so far, however, he hasn't given us any indication.
Mom continues to taper off his medications and we hope this will result in him coming around a little more and speaking some. He does not like to be carried around and we try to alternate him between bed and his stroller upstairs. His appetite has slacked off a bit and he is still receiving saline throughout the nighttime. His labs have not come back yet from Monday, a far cry from the 15 minute back at the BMT clinic. Dad is very busy and Mom keeps doing the job of 3 people. The days are long and we keep Abby involved with her homework, etc. It is very strange for us to see how easy things like reading and math come to Abby and Lucas had to always battle and work so much harder to just to keep up. We promised Lucas and Abby a few months ago that we'd get them a dog in the spring and we plan to keep our word to them when we get settled in the new home. We are hoping that the spring brings better times for our family and Lucas. We may not have the time to write,call or email, but we think daily about our friends back in Minneapolis and the RMH and hope things settle down for us contact everyone. Godspeed!
Wednesday, March 5, 2003 11:50 PM CST
Lucas has remained very stiff and shaky the last few days. He actually came downstairs tonight for the first time since Sunday. He is still very quiet and speaks only 2-3 words a day and we hope that this is only temporary. He had a new handicap stroller donated by Mrs. Kiely and he sat in it tonight to each supper and some fruit. It is better than any chair or couch at this point.
Dr. Lipp the kids pediatrician stopped by today to examine Lucas and he felt Lucas was doing fine except for the tightness of his leftside. He was really glad to see Lucas smiling and laughing. Lucas seems content now to remain in bed and rest. Even though the VCR is on, sometimes we see him just looking out the window. Mom is tapering off some of his medications, but he still gets saline at night and waking up drenched. We haven't yet heard from Hackensack Hospital yet, however, we switched Home Care Providers today as the one we had from the beginning was coming from Totowa (60 miles north) and it took too much time for them to get here. We contacted a local agency called Option Care who does the IV pumps and they are coming over on Thursday.
Abby sits in with Lucas and watches the videos with him. She has had her moments of feeling left out, but we can't help it at times when we both have to change Lucas and change his bed. Both Mom and Dad are going a bit crazy with everything right now and the fact that we have to take care of the new house papers, etc. just makes the stress compounded. Our house seems like Grand Central Station at times and we really don't get a chance to rest until bed time in the early morning hours.
Lucas still seems happy to be home and he is getting evaluated for physical therapy on Thursday. He really needs help with his legs as the braces aren't fully keeping his legs from "clubbing inward." He shakes a lot when he picks up food and we normally feed him so that he doesn't get frustrated and cry. We have been trying to respond to emails, phone calls and postings on his website as best as we can, but the days seem to go by too fast and we just can't seem to get to what we want. We hope it gets better down the road. Godspeed!
Monday, March 3, 2003 6:05 PM CST
Things have very busy and hectic the last few days. Lucas has been very uncomforable and has not moved his bowels in several days and after talking with the BMT clinic back at Fairview, they believe that his muscles are too weak to have a movement. We have tried a few suppositories with no success. He is struggling to relax. We have moved him upstairs into his room and set up the VCR. He seems to like it upstairs. Our home care nurse came this morning for labs and FEDEX came to pick it up. Lucas is still receiving saline at night and we are trying new absorbant diaper inserts that are retaining much more urine. Mom is still doing a great job with his meds. It was a hectic morning getting Abby out the door, meeting with nurse and doing his meds. We are waiting for Hackensack to call back with an appointment.
To complicate matters on the good side, we bought a house on Sunday. Mom and her friend Karen went to an open house a few a blocks away here in Little Silver. Then Mom and Dad with Karen's husband Chris (a builder) went to examine it more closely and it looked good. It was a ranch with 4 bedrooms (one will be Dad's office), more spacious kitchen and family room. It is much bigger than our home here and cost a little more, but with favorable interest rates we should be able to swing it. Our friend Doug, LS school board president and Peninsula Soccer Club, informed us that Atlantic Mortgage will take care of us and that the Fire Dept. will help us with whatever we need. It should make things easier getting Lucas around and because of his stiffness and hating to be carried up and down steps, we'll be able to wheel him on one level. We will try to get word out there about our home being for sale and give that a try at first. For Lucas's safety, we don't want people coming in and out of our home while Lucas is here. With the help of our friends and community picking up our mortgage payments here, we can bridge the new home until we sell ours. Very stressful, but we have no choice but to make Lucas's and our lives a little easier.
We had many visits from family and friends the last few days. It was great for Lucas to see everyone and we know he was very different from the last time everyone saw him. He is getting a lot of love and support back home. We thank Mayor Castleman here in Little Silver for mentioning Lucas's story in our town newsletter, The Little Silver Fire Dept. for offering their help and support, our PTO for constantly supporting and mentioning about Lucas, and our School Board and School System for so much support for Lucas and our family. Our town is proof that people can make a difference in a families life with their sacrifices and our family will never forget. Godspeed!
Saturday, March 1, 2003 10:03 PM CST
Thank you to everyone for the welcome home and messages and postings wishing Lucas well.
We have been adjusting to being home and trying to keep Lucas comfortable. He has received a few visits from friends and was very excited each time. He is very stiff and tight. We have being keeping him in leg braces for the day and his ski boot brace at night. He is still receiving fluids through his port during the night and Mom is giving him most of his other meds through the port. He gets a few pills a day. He has been eating OK and still not yet drinking the proper amount of fluids. He takes very little sips when he drinks. He is very quiet and has only said a few words after some coaxing. His only words today were "love you mom." We try to get Abby involved with him and keep her included with everything each day.
Today, Mom had to change the dressings on his port and it was a little different than the dressings on his Hickman catheter. We called our friend Kathy here in town (she's an oncology nurse and used to the Hickmans and ports) to come over and help with the dressing. We couldn't wait to get to Hackensack Medical Center to change it. It turns out that our BMT doctor at Hackensack and Kathy worked together at Sloan Kettering in NYC and she said he is terrific. Carrying Lucas is not easy due to the fact that he can't bend his left knee and is generally very stiff. It is very difficult getting onto the toilet and keeping him on the seat. Since he doesn't talk, it is very difficult to tell if something bothers him. The home care nurse is friendly and helpful. She comes once a week and will also draw blood for his labs. Our visits to Hackensack will be just general exams and going over his labs.
Overall, it is great to be home, although it is a lot of work. We must keep Lucas comfortable and keep Abby included. Godspeed!
Thursday, February 27, 2003 4:58 PM CST
Lucas is home! (New Pictures)
His eyes and cheeks smiled like no other smile when we came down Salem Lane and saw our house decorated with balloons, posters from friends and school and gifts inside our home. You could see "home" working its wonders on him. Mom came into the house wondering it she could again get used to stairs since there are no longer elevators to use. Our limo driver each week for the last 2 1/2 months met us at the airport (along with Grandpa) and he provided us with a box of fruits and vegatables. The arrangements to get us home that were made by Jason's Dreams for Kids were perfect. The last 2 days of packing and shipping boxes were hectic. Yesterday as we were about to take the rental car back, the rear tire was going flat just before dropping Lucas off to his final BMT clinic visit for more blood. Our friend Jeff, Max's dad(MLD patient) drove Mom to the hospital and also picked up more packing tape to save the day. Continental's staff at Minneapolis, on the plane and Newark were superb and very gracious and it was our smoothest flight out of the 3 months. Lucas went right to bed and is sleeping in his own bed for the first time since November.
Lucas is coming home with a good dose of platelets and blood from the last 2 days. We have all of our paperwork for our doctors and Hackensack Medical Center. We have to go to Hackensack once a week the first month and then once every two weeks, until we return to Minneapolis for 4 days on May 25. Abby has been a great little helper and she takes care of her big brother. We have seen her grow up a little too fast with everything she has had to deal with, but she is doing very well and we constantly include her.
We had some emotional goodbyes with Lucas's therapists, with the staff at the BMT Clinic and Dr. Krivit and with our friends and staff at the Ronald McDonald House. We don't know what we would have done without the incredible help and dedication from the RMH staff the last 3 months. They take care of us each day and the volunteers who come in to cook help out tremendously. The conversations and emotions of the families at the RMH are a daily reminder to us all just how much of a battle the families have and for us to have so much support over the last several months has been priceless. Where do we begin to thank everyone?
Learning what Mom does daily for Lucas is overwelming. Our home care nurse thought Mom was a nurse, until she learned otherwise. We have no time to rest. We have to keep Lucas stretching and helping him physically and emotionally. We have to keep him infection free and avoid situations that could endanger him. Dr. Krivit was pleased with Lucas and we believe he'll help our MLD children even further. He has to come through with the MSC cells and we'll do whatever it takes to help him get there.
It is now time to unpack and set up his medications. We came home with 2 boxes and 5 big suitcases. We shipped 6 large boxes yesterday from the RMH. Things are a bit tight at home, but we are glad to be home. Thanks again for the welcoming home display as it was in Lucas's words "Sweet."
Thank you! Godspeed!
Tuesday, February 25, 2003 8:00 PM CST
We'll be home Thursday afternoon.
Lucas had surgery this morning for 1 1/4 hours. He had his Hickman Catheter removed from his left chest and had a Port Catheter inserted under his skin on his right side. He was a bit groggy and vomited as he came to. He rested in a isolated room in pre-op until he was alert enough for us to wheel him over to the BMT clinic for his labs and a little education for Mom with operating his new port. The Hickman remained in place all the time for medicine and labs and had to be flushed each day. The Port is actually under the skin and is accessed with a needle that goes through the skin, but is taken out when finished. It is easier for washing him, less chance for infection, and most of the time he will not have any tubes hanging from his chest and he can go swimming. Dr. Krivit told us at this point immunizations are not important as he believes that the immunizations may have contributed to the onset. He said to post a sign on our home door alerting everyone if sick, please do not enter for Lucas's benefit. We still have to be very cautious in public and protect him as vigorously as we have the last 5 months.
We have to take him to Hackensack Medical Center for their orientation to MLD and Lucas's protocol. Dr. Krivit feels Lucas has done very well and that our other MLD friends are doing very well and this is enough incentive to push even harder for Mesenchymal Stem Cells (MSC Cells). The closer to transplant these cells can be used, the better chance of delaying even further the MLD progression we have.
Today our little fighter was very quiet and very weak from this morning's surgery. He has spoken only 2 words all day and we hope he is only being quiet until he gets home, but he is too weak right now to talk. He does laugh. Getting into a wheelchair is a struggle because it is very difficult for him to bend his knees and he is very stiff.
We have started saying our goodbyes to the hospital and our RMH friends. The bonds we have forged here will last for ever and the Blessed Mother has to spread her healing to us. The kids here go through so much each day and battle long odds. They are cared for by dedicated people and saying goodbye to people who give so much to your child is not easy. We will be back in 3 months and the true miracle for us would be for Lucas to use his walker for atleast 10 steps. Then improve that on our next 100 day visit. You don't accept words like can't or no. We know so many people are pulling for Lucas and aside from seeing him physically drained and weak, you will also see his big smile. Thank you for caring for our Little Luke! Godspeed!
Monday, February 24, 2003 5:15 PM CST
Lucas and Family are coming home Thursday afternoon!
Today was an important meeting with Dr. Krivit. Several major decisions were made and the overall outcome was positive. Over the weekend, Mom changed Lucas's dressing for his Hickman catheter and noticed that it had come out of him chest by 1/2 inch. With our BMT nurse Pat's recommendation and Dr. Krivit's approval, it was decided that Lucas will have a 45 minute surgery on Tuesday to take out the Hickman and replace it with smaller, easier to maintain "Port Catheter." This will facilitate him taking saline fluids, steroids and his CSA medication and it will be just under the skin which means less chance for infection and won't be pulled out. He'll be in recovery for several hours and take some nausea medication to ease the recovery. He'll come home tomorrow nite. Also, they are getting all of our paperwork together for our doctors back home and will be making the necessary arrangements with Hackensack Medical Center. Dr. Krivit is confident with their program and at least we don't have to travel to far and into the city.
He reiterated that we did not come out here for a cure and that Lucas would lose about 10-15% of his abilities and it appears that is what happened. It has overall been successful transplant for his MLD and although he has lost his ability to walk and is right now not talking very much, his sulfatides are normal and his body is making the ensyme that is helping him mentally. He is aware of his surroundings, eats and drinks and laughs a lot. Compared to last week when he didn't say a word for 4 days, Dr. Krivit, Mom, Grandma and Pat and the Rehab Gang have seen a big difference in him today. That is why Dr. Krivit has decided to let him go home almost 30 days sooner than his 100 day minimum. He explained to Mom that he understands what Dad has to do back home and feels it is important for him to continue his work for his family and that he and Abby have traveled too much the last 2 months and Lucas needs his family and community to help him go forward. We are planning to come back to Minn in early June as the start of his followup visits.
We keep working hard every day with Lucas and keeping Abby as normal as possible. We do laugh a lot and make many jokes and the staff here has gotten used to us. They gave us a book back in December about laughter and it is very true that keeping things happy and silly is important. From Lucas nicknaming Dr. Krivit "Dr. Old Man" to his contagious laugh coming back has proven our efforts to be working. We have a long road ahead and Lucas has many hurdles. Dr. Krivit told us to hang in there for the MSC cells which could further help Lucas and told us that if the FDA gives him the OK, Lucas will be in line for those cells. He also said, it would be experimental and probably not covered by insurance and to keep on fundraising for Lucas's future and the future of other MLD children. He said it is very difficult to explain to the beauracrats that although something is not a cure, it could ease the sufferings of the children and stress and work of the families. We have many friends here at the Ronald McDonald House and constantly asked our Blessed Mother for her prayers and miracles and cures. Thank you for your prayers and support for Lucas. Godspeed!
Sunday, February 23, 2003 12:16 AM CST
Dad and Abby made it back to Minnesota. We are attempting to come home next Thursday, all 5 of us. Dennis from Jason's Dreams for Kids in Red Bank has been trying to get us home on a corporate jet but either no one will do it or it is too expensive. He is trying to work out something with Continental to get us all on the plane. Lucas was excited to watch Dad and Abby come through the front doors of RMH and so were they. It took some adjusting emotionally to see Lucas as things had changed physically and emotionally for him the last 2 weeks since they were here. Mom and Grandma said he had about 4-5 down days but between last nite and this morning he has been in much better spirits and laughing more.
Last nite Mom noticed that his Hickman catheter had come a bit out of his chest by abouut 1/2 inch. We may have to take him into surgery tomorrow for a minor adjustment, but nothing we don't think will stop us from coming hoom. He is much more stiffer than 2 weeks ago, but talking a little more and that has made us feel better. He is still eating better and taking some of his meds by pill. We are starting to pack and clean up. Although we are looking forward to going home, we will deeply miss our friends here at the RMH. Everyone is so supportive and caring for each other and we have received so much support and encouragement from their strength and optimism. We also thank everyone back home and from around the world for your support and generosity. Godspeed!
Friday, February 21, 2003 12:31 AM CST
Lucas had an early appointment with Dr.Krivit in the BMT clinic. The MRI did not show any toxicity, which means that the disease is progressing. In one respect, the BMT has worked, but the disease is taking a different direction that what we'd hope for. Dr. Krivit told Mom that we can leave at anytime and get Lucas home. Everyone feels that home and familiar surroundings may be the best medicine right. We are trying to line up a corporate charity jet to get us home sometime next week. Once home, Lucas will be going to Hackensack Medical Center once a week for labs. Godspeed!
Wednesday, February 19, 2003 7:31 PM CST
Lucas had his spinal tap yesterday and the fluid was clear and showed no infection. He had a therapy and was a bit more with it on Tuesday as compared to recent days. He was still drueling and sometimes out of sorts and slumping over. A lot of ups and downs during the course of a day. Today it was confirmed that Lucas is coming home the weekend of March 8. We believe this has lifted his spirits a bit more. He still is not walking, but his appetite is better. We're not sure if the NG tube will be put back in for his meds as they are going to try to teach him to take pills. Everything considered, Dr. Krivit was stilled concerned about him not keeping himself upright and the drueling. He has trouble sitting up in a chair or his wheelchair and he slumps over. They want him to have another MRI Thursday morning and they are trying to determine if he has been under some kind of toxic reaction from the CSA medicine (this helps the transplant grow in his system). If this is determined to be the case, then they can adjust his meds and we go from there. If the tests come out negative, then that would tell us that the disease is progressing and there isn't much we can do.
He managed to have his therapies today and was really tired. Each day at this time is a roller coaster ride for Lucas as we find out something new each day. He is talking a little more, but we feel he wants to come home. We'll have to travel to Hackensack every few days for his Labs and checkup until we go back to Minn in 3 months, but at least we're all home. Abby is back home from PA and keeping Dad company. She can sure talk and we hope this rubs off on Lucas on Saturday when they return. We again thank everyone for your prayers, support and help during this period of time. We are a bit tired, but thinking positive that Lucas will perk up as we get closer to coming home. Godspeed!
Monday, February 17, 2003 8:21 PM CST
Since the last update, Lucas has had a few set backs. After bringing back to RMH his favorite Red Lobster meal, he didn't eat. He remained quiet and resting. This morning at the BMT clinic, Mom and Grandma had a meeting with Dr. Krivit and our BMT nurse Pat. Prior to that, Lucas had his NG tube taken out and they believe it may not have been properly in his stomach. Dr. Krivit believes that Lucas was doing great a few weeks ago, but his recent set backs may be a sign that the disease is progressing faster physically than expected. He wants Lucas to have another spinal tap tomorrow morning to see if his spine may have an infection. They will use the least amount of anesthesia so that the the procedure doesn't cause the disease to progress much further and we hope he doesn't feel much pain. As with the BMT and any surgical procedures, for some reason they tend to progress the disease and they prefer to hold off on surgical procedures as much as they can. Dr. Krivit is also concern at this point that Lucas may have reached a point where the disease is causing severe physical problems and the likelihood of Lucas gaining his walking and motor skills may not occur or improve. We disagree and think that possibly when he gets home with a change of scenery things may change. He is getting excellent care in Minn, but we are being told that disease is very difficult to predict.
Pat tends to think that Lucas needs his spirits raised and that a change of going home might do it. Dr. Krivit agreed and told us that he has confidence in the BMT program at Hackensack Medical Center in Hackensack, NJ and they could take over when we get home. They would likely let us go home early and it would be a 1 hour 15 minute car ride every few days. We'd still have to go back to Minn in 100 days, but everything else has been tried and they feel this could happen by March 9 or 20 days prior to his 100 days. Dr. Krivit said MLD is unpredictable and its progression is hard to predict. He reiterated that he did not promise a miracle, but we must continue to hope that Lucas will beat the odds that are stacked against him now. The snow and weather back in NJ is miserable and our last ditch effort with the ranch house went down the drain this morning. We plan to stay put here and take it easy for now and do a few things to the house to help Lucas. Abby is still in PA with family and seeing drifts much taller than her. We rely on each other for strength and support and continue to do our best. Godspeed!
Sunday, February 16, 2003 1:58 PM CST
The last few days, Lucas has been very quiet and has not had much energy. Mom contacted the BMT unit with concern and they informed her to hang in there and wait a few more days. Having the NG tube pulled out and then reinserted the next day has probably strained his throat and it may take several days for that to heal. It is kind of normal as Lucas is hitting the dog days of the transplant. Wanting to go home, but not yet ready. Absorbing everything in his mind and realizing the days are long and slow moving. Mom and Grandma are taking him to Red Lobster around 3:00 for mid lunch/supper and to avoid the people. We are hoping that he can get a boost from somewhere for his morale. Everyone there and here are doing their best for him. Waiting and doing odds and ends with him is the game plan right now. We battle those moments of Mom seeing and for Dad hearing him down and silent, and depart from the one-day-at-a-time game plan. We pray and wait patiently for things to get better. Abby is now in PA, just beating the snow, and celebrating Pop's 82nd birthday. She will be back Tuesday and Dad will digging out and plowing through his work. Thank you for all support, work and caring that so many of you are doing. Godspeed!
Friday, February 14, 2003 5:16 PM CST
The last few days have not been Lucas's best days. Yesterday morning, the NG Tube was taken out and that wasn't the problem. It was until later that Mom had to give him all the meds and Lucas spit them out. She called Dr. Krivit immediately and he said Lucas has to have it put back in and that may delay our coming home earlier than 100 days. It was not a happy scenario and this morning he had it put back in. Lucas has been very quiet and resting a lot. He has not wanted to walk and Mom and Grandma believe that the tube and everything happening has just gotten him down. He has received tons of cards, messages and gifts the last few days, but his mind is digesting all that he has been through and his willpower has dropped. He is still eating OK, but all of his therapy visits didn't go well. His speech teacher, Jim, had a private talk with Lucas and they hugged for a few minutes. Just as in New Jersey, everyone who works with Lucas gets very attached and gives him 150% of their effort and we really admire that. Our little shrimpeater is still on course, NG Tube or not, to come home a bit earlier according our BMT nurse coordinator, Pat. She said he can still come home with the tube and continue his meds in NJ. We are hoping for March 20 as the final day in Minn.
We know we have to go back in 3 months, but we are promising a Yankee game when he comes home, maybe sitting way in the upper deck away from people for his safety, and then we plan to visit Chicago on our way back to Minnesota and see the Cubs. This has helped him perk up before, but not today. We don't know what to say or do right now and hope he can snap out of it. He has every right to feel down since he has been through so much, but we must battle right back and get that famous smile going 24/7. Abby has been doing better and keeping busy and Dad is very busy. Dad made it to school for 20 minutes to see Abby during their Valentine's Party. We just want this Winter to end. Godspeed!
Wednesday, February 12, 2003 7:33 PM CST
Lucas had a day off from BMT clinic today, but worked hard the last 2 days at PT, OT and Speach. He managed to hold on to the railing and walked up 3 steps today, but he couldn't make it down. That's 3 more steps than yesterday. He has been a bit tired the last few days and has used his walker only a few times for a few steps. Dr. Krivit wants to have the NG Tube taken out of Lucas's nose/stomach tomorrow and he wants him to start his meds orally again. He has been drinking more fluids and we hope his tongue does not get crusty and hairy like before. Mom will be putting him back on the saline IV drip through his Hickman catheter at nights only. Mom and Grandma are managing to get around in the bitter cold with Lucas. He is still eating good and resting a little more than usual. Dad is very busy back home and Abby has been doing better. We continue to receive so much support from Little Silver and we are humbly grateful. Also thank you for all the donations, food, air miles, limo drivers to the airport and cards from schools in Little Silver, Fair Haven and Macungie,PA. It is very comforting to know that so many people care about Lucas and we have to believe that all the support will help him get stronger and fight this disease. Godspeed!
Monday, February 10, 2003 9:40 PM CST
Lucas has been quiet and not getting up to walk the last few days. Dr. Krivit is very happy with his progress in his blood counts and engraphment. He believes Lucas will fight hard and regain some of the physical abilities. He stressed to Mom and Grandma today that the BMT should preserve his mind and he may continue to have learning difficulties. Bluntly put by Dr. Krivit, we have done our job to this point to avoid Lucas moving into a vegatative state within the next few years. That is what we were told 4 months ago and we are happy that he is telling us that we are accomplishing what we set out to do. Physically, it is out of his hands at this point of time, because today there is nothing they can do. If Lucas does not receive the MSC cells shortly, it is expected he will lose totally his ability to walk, talk, etc. But, even if that happens, he should be very cognitive and capable thinking and expressing himself through voice activated computers.
Over the last several days, we have given the above a tremendous amount of consideration and thought. How can we make our home more handicap accessible for the inevitable with Lucas. After much thought and input from our family and friends, it was concluded that our home may not offer the solution, no matter what we try to do to it. What would be involved to make it accessible for him and also allow Dad to work home and help Lucas and to sleep on one floor is just asking too much and not feasible. The last few days was spent making the effort to acquire a ranch home here in Little Silver to help Lucas and we were unsuccessful. We looked at a ranch home here in town within our range to fit his needs and ours too and knowing all the help that has been offered here in town for Lucas to fix our home made us go for it. We offered more than asking price, but the owners fulling knowing our situation, decided to turn the situation into a bidding war and we lost. It does not discourage us and we know our friends are still out there pulling and looking for us. We can stay here and wait to see if someone here in town is looking to sell what we need. We have to eliminate stairs, but as long as Lucas is young and on the light side, Dad can still carry him up and down the stairs. We have learned to not harp on bad news and to move forward to the next day.
Dad is very busy back home and Mom and Grandma are working with Lucas as much as he can handle. Abby is Daddy's little helper and keeps him company while he works. She's gonna stay by his side in NJ and go back to Minn when he goes. We thank everyone for your help and support for Lucas and our family. Godspeed!
Saturday, February 8, 2003 7:53 PM CST
The last few days for Lucas were spent practicing his walker, exercising his tongue for swallowing and talking, and using his new foot braces. Saturday morning, Mom woke up and Lucas's NG tube had come out of his nose and stomach. That required using one of his rare off days to go back to the BMT clinic and have it put back in. Unfortunately, no one in the clinic could do it, then Mom and Lucas had to go up to the BMT floor 4A and one of the nurses gave it 4 attempts until it was finally anchored into stomach. Lucas doesn't want to go back taking the medicines orally and the tube has made it easier for him to receive fluids and he didn't want to go back to the IV drip.
He worked hard at OT, PT and Speach on Friday and is getting use to his special keyboard for typing. We are letting him set the pace with learning and taking the hint when he has had enough. Overall Lucas is in good spirits and wants to utilize his walker as much as he can. He is trying to learn the use of his right side and to hold a pencil. We give him every chance to get up and do something and our time is 100% devoted to him.
On Friday Dad and Abby came home at 1:30 am and the busy work has started for Dad. Abby and Dad didn't want to leave Minn and Mom and Lucas didn't want them to leave either. Abby cried for the first 10 minutes after leaving the RMH as she wanted to stay and spend Valentine's day with Mom and Lucas. Abby enjoyed the school at RMH and all of the children, young and old, know each other and we can really see the bond these kids have. Being at the RMH lets you meet people from all over the country and world. Lucas is amongst kids who don't speak English and some who come from parts of the country with different accents. We meet families who have lost their jobs due to circumstances beyond their control. We are told out here that it may take up to 4-6 months for the whole process, but you are not prepared to have to leave your kid behind and go to work. Although it is the busy season and we can't be together that much as a family, we do feel fortunate that we have some control over how we provide for our family. It is extremely difficult for Mom and Dad to say goodbye to each of the kids and each other. Dad has to listen to Lucas say in his frustrating voice behind his filtered mask why does Daddy have to go home and we repeat it over and over "to work", but all he sees is Dad and Abby getting into the taxi. We do what we have to do each day, but there are times we long for the days when we would watch Lucas run up the street to catch the bus and now we are teaching him to put one foot in front of the other. Each day is important as it is hopefully one more day closer to coming home and we just do for the kids as best as we can.
Thanks again to the Lucas 3181 website for the welcoming groceries and to all the kids back home and in PA who write Lucas and to all who donate to Lucas and support him through prayers and letters. Godspeed!
Thursday, February 6, 2003 10:04 PM CST
This morning's visit with Dr. Krivit went very well. He is very happy with Lucas right now. He was also happy with Mom and her decisions and judgments with some medications. Lucas is no longer having pain with his bladder and urinating. At this point, he no longer needs blood and platelets. His counts are gradually rising and we are doing our best to keep him as germ and bacteria free as possible. Constantly washing hands, wearing masks when needed and being careful in public. Most of his daily work now encompasses building his strength back up and learning to walk and write. We are not sure if he will regain the full abilities in his left side, but he is working hard.
Today, he was given a walker in occupational therapy and he took right to it. He walked about 30 feet and his therapists were very pleased for his 1st time. Tonite he wanted to use it to walk to the elevator and down to the RMH 1st floor. He made to the end of hall, on the elevator and about 15 feet downstairs and it took about 15 minutes. That was all he could handle. He had to be carried upstairs, but he tried very hard. He wants to get up and walk. He begins to lose his balance and fall when he can no longer walk anymore. We also do a lot of mouth exercises with him to help him re-learn chewing and swallowing. We teach him to put his tongue around his mouth to check for food. That is where Dr. Krivit nicknamed him the "chipmonk" for storing food. He did not have his vision appointment today and that is next week. Everything he deals with each day has to do with the sensory loss due to MLD.
Today we took him in person to Red Lobster before supper when it was empty. He had his shrimp scampi and lobster tails. He has also been on a roll with Yu-Gi-Oh cards. The last 2 days he opened 4 packs of cards and found the 3rd and 6th rarest cards (out of about 1,000 cards) worth about $90. We have plastic collector card cases and got him some more cases in St. Paul. Mom went to target in St. Paul tonite to pick up a water pick to help him clean his teeth. Mom was using soft sponges to clean his teeth and tongue the last 2 months. Brushing could cause bleeding, which can open the door to bacteria. The water pick is really needed for his tongue which is getting better each day. The days are long and tiring for him. We don't sit down much and he usually is awake until midnight. Dr. Krivit gave Lucas a break from the BMT clinic until Monday which was great news. He still goes back for OT and Speach and now back to PT each day. It will take a lot of work to get his writing back and ability to read again. Abby has enjoyed school here at the RMH and will be going home for the next 2 weeks with Dad. When they come back to Minn, she may stay here with Mom, Lucas and Grandma for a while.
Dr. Krivit has promised to do all he can to help Lucas get the MSC cells for his physical abilities and we hope and pray he succeeds. It is very difficult to remember what Lucas could do and watch him now slowly work to learn those things that we all take for granted. It is inspiring to see him use the walker and to attempt right handed to write his name. We thank everyone for your support and prayers. Godspeed!
Wednesday, February 5, 2003 8:12 PM CST
Today was a cold snowy day, but a short one for Lucas. No clinic and only one OT visit. They are trying to teach him to write right handed, but it will be a long haul. He is very shaky with each hand. He has an eye appointment tomorrow and he'll be having some tests to pinpoint why his eyes are easily distracted. School work is very difficult right now. We have temporary stopped PT at this point as they have showed us what to do at home and basically he needs to do as much walking as he can right now to build up his strength. He does try to walk in our room, but his left leg just doesn't get it going for him. We are planning if it doesn't snow tomorrow to take him to Red Lobster, but we haven't told him yet. Mom is enjoying running his medications and fluids through his NG tube through his nose. He still has some frustrations, but we are learning his limit and just simply stop. We are trying to clean up his tongue which got very hairy and sore from a few of medications. Thank you for keeping up with Luke. Godspeed!
Tueday, February 4, 2003 8:00 PM CST
Lucas got out of hospital last night and it is good to be back at the Ronald McDonald House again. It is working out much better now that he has a NG tube down his nose as now we don't have to struggle with all his medications orally. He has to take about 22 medications a day, all in liquid form. Also he is now unhooked from the IV pump as he gets all his liquids through the nose tube. Mom has to put in about 1000 ml of water or saline a day. He still has his appetite, but Dr. Krivit has nicknamed him "Chipmonk" because Lucas stores food in his mouth and takes time to swallow.
At clinic today Lucas' counts were improving. His white count is now 4.6 and we found out from Dr. Krivit that he is fully engrafted 100% donor and he is now generating the enzyme in his body that he was lacking before. Occupational therepy is a slow go due to his increased weakness on his left side. He is going to start to use a keyboard for schoolwork as he has little control with a pencil right now. We need to strengthen his grip and coordination and might start to have him use his right hand to write. Lucas still finds it very difficult to walk even with the leg braces. He might start to use a walker so that he feels more secure to walk and that he would have better balance.
Lucas' spirits have improved slightly now that he is out of hospital. Also, it has helped that he has received lots of packs of Yu-Gi-Oh cards from friends and family, and today he found a very rare Red Eyes Black Dragon card. He also trades cards with his friend Max and is awaiting a card from his nurse friend Steve in the BMT clinic. He had shrimp for supper tonite and he had a little stamina left to sit with us and read his messges and email. Dad brought back some school letters and cards to read to him. We received about 8 inches of snow on Sunday nite, but it doesn't seem to melt here and the side streets are pure ice. We continue to thank everyone for supporting Lucas as he continues to battle on. Godspeed!
Sunday, February 2, 2003 10:44 AM CST
Things have remained about the same for Lucas. He is still feeling pain in his stomach area and they are providing more and more fluids. His bed has to be changed 3-4 times a day. He has also been having trouble taking his medications which are in liquid form and is part of his not drinking anything. Later this afternoon, the doctors are going to insert a tube down his nose to his stomach for his medications. They say it doesn't hurt nor bother him and sometimes they have to do this when kids can't swallow there medications. This will remain in him until we come home in April. Mom is hanging in there, but very tired and is taking a small 1 hour break to go home and shower and pick up some clothes. Dad is on his back with Abby to Minn. and he has a nagging cold. It looks like masks are in order, but they won't have to go a hotel. Lucas is looking forward to his new Yu-gi-oh cards that are on their way. Because of his shakey hands, he has stopped playing his computer games and Gameboy Advance, and the Yu-gi-oh cards are what he enjoys right now. We once again thank everyone back home for taking care of Dad and Abby and for all of your support and contributions. Godspeed!
Saturday, February 1, 2003 12:13 AM CST
Lucas is still in hospital and the doctors aren't sure what the problem is. According to Lucas, the morphine didn't ease the pain and they stopped giving him that. They are increasing his fluids even more and he is constantly urinating and feeling pain. So far the tests haven't shown anything yet. The medication they are giving him now is causing his urine to turn orange and it is staining everything. They feel at this point that by upping his fluids eventually this infection will run its course, but they aren't sure. He still managed to have occupational therapy this morning and his spirits are mostly up. Mom is staying with him around the clock and Dad and Abby come back tomorrow. We are all doing our best in Minnesota and here in New Jersey to keep things going and to keep Abby busy. We know it is a lot for her to be shuffled back and forth, but we still think it is best that we keep our family together as often as we can. Thank you to everyone for your support and comments. Reading the cards, emails and website truly gives us something to look forward during the day. Godspeed!
Thursday, January 30, 2003 at 08:48 PM (CST)
Lucas has spent his second day in the hospital. For some reason, the doctors do not know why he is not thirsty. Mom also found out that Max, Lucas's friend is also not that thirsty too. They are wondering if it is part of the MLD at this point. Meanwhile, he is receiving medication to comfort him from the pain and he is resting. Tomorrow they are planning to do another ultra sound and another test to look for answers. If he can start drinking fluids, he could get off the IV and clean out his system. The bladder infection is being treated and we can only wait and see what they find out.
Dr. Krivit has gone to meet with the company that has developed the stem cells that could help MLD kids and will return next Tuesday with the news. Mom is back to sleeping in the hospital room with Lucas and the routine of waking up throughout the nite. His blood counts remain the same and have not increased for a few days now. Godspeed!
Wednesday, January 29, 2003 at 09:57 PM (CST)
Today was a tough day for our friends back home and Lucas.
We want to send our prayers and thoughts to the Juliano family back home and we want Debra to know that we are thinking about them and pray for their strength and love at this time.
Earlier this afternoon during Lucas's visit to the BMT clinic he was complaining about severe pain in his groin and his stomach again. He has been unable to shake this pain. Dr. Krivit was concerned that his "Hemoragic Systitis" (blood clots in his bladder) was not going away and it could lead to a more serious problem. After being examined by a few doctors, Lucas was immediately admitted into hospital BMT unit 4A where he spent 33 days. After some pain medication, he was complaining less and resting. His blood levels have been steady, but they were concerned that this could develop into an infection. We are being told that they may want him to stay there for at least several days to be monitored. His immune system is still very weak, as is his stamina. At this point we can only see if this goes away and hope he starts to feel a little stronger. Godspeed!
Monday, January 27, 2003 at 09:36 PM (CST)
See new pictures of Lucas!
Yesterdays website posting apparently didn't make it on the screen and we apologize for that.
Today was our first meeting with Dr. Krivit in 4 weeks. He said he is very pleased with Lucas's efforts and his present condition. He told us not to worry about the Roid Rages from the steroids as they will pass and also the blood is in urine will soon pass, but Lucas must start drinking much more liquids so that he can get off the IV. He is very frustrated with the IV and it is a nuisance getting him around with it, but he must keep it until his own system can start flushing itself. He informed us that now he is ready to fight even harder for the "Messencle Cells" for the kids. (We probably spelled it wrong, but these are the cells that could help slow down the physical losses that Lucas and other MLD children endure. We don't know too much about it, but if it can help, Lucas will be ready to receive that stem cell also). He has been having trouble coping with his therapies and it is very hard for him getting through a session. He is aware that the steroids are driving him crazy and after an episode, he'll sometimes say sorry and say why are these medicines making me mad. We inform him that we know he cannot control himself and that we have to deal with it with patience and ask him to do the best he can to calm down and not let silly, stupid things set him off.
Dad and Abby have made it home to NJ OK and thank you for the generous groceries once again from the Lucas3181 website back home. We can not say this enough, but thank you to everyone for writing, emailing, comments on Lucas's website, fundraising and donations for Lucas, and all other forms of support for our family and Lucas. When we are together in Minneapolis, the days are long, stressful and tiring. When Mom is in Minneapolis alone with Lucas and Dad is back home with Abby working during this busy period of time, it is again stressful and tiring, but our true way of thanking everyone is not to make a general thank you on the website and so we try to find moments to write or even email thank yous to everyone for the support and help for the last 5 months and we know we are considerably behind, we are trying our best and want to everyone to know that we will someday get out the thank you note. Godspeed!
Sunday, January 26, 2003 at 08:32 PM (CST)
See New Pictures of Lucas!
This will be a short message. After typing a lenghty update and keeping the kids busy here, just as we went to update the webpage we lost everything as we used up our 45 minutes to do it.
The summary of our last message was that things have been a bit difficult the last few days. Lucas has "Roid Rage" as it is called by the BMT staff. That is short for Steroid Rage or the the mood swings and anger bouts he has. The days are getting longer and his bladder infection and passing of blood clots in his urine don't help. Our patience gets stretched very far each day and we battle to remain calm and not vent any emotion around him. His last lab counts were a bit lower, but not too bad. He received more platelets and blood today. The car and handicapped parking pass are working out much better than the shuttle service. We have more control over our day and went out to the Roseville Mall (similar to the Freehold Mall) to get him sneakers that go over his 2 leg braces and some Yu-gi-oh cards. (Lucas likes bringing his cards to the clinic and showing one of the nurses Steve. Steve borrowed 5 cards to play with his kids and Luke enjoyed helping him). We got him some popcorn in the mall and wanted to walk on, but he had to put his mask back on and couldn't eat anymore. We found out how healthy his lungs were and so did everyone else in the west side of the mall. The wheetchair is not too bad using, it is getting used to it in frigid temps. with an IV bag attached to him and trying to go places where there are not many people that becomes difficult.
Dad and Abby leave tomorrow, but are comeing back next Sunday for 6 more days and then back to NJ for 2 weeks. We want to stay together as a family as often as we can without bringing back any sickness to Minn. We thank everyone back home for your support and generosity. Godspeed!
Saturday, January 25, 2003 at 07:53 PM (CST)
Happy Birthday Sam (30 something)!
This morning was another snowy morning and roads were again slippery. Dad made use of his "handicap tags" and parked in front of the PWB Clinic for Lucas's visit. We only had to walk 15 feet, but that short distance was probably 40 below because of the wind tunnel. It saves time to park there, but it probably isn't worth it for him to be exposed to such temperatures to get out of the car and then get into his wheelchair. The wind actually pushed Lucas along the sidewalk even with his wheelchair in a locked position. Lucas had to spend over 3 hours getting platelets and getting his Saline IV changed. After his labs came back, they said he needed blood, so instead of an off day tomorrow, we have to go to clinic for 2 hours.
Since Lucas is off his growth factor medication, his white cell count came down, but it is inching up. All other levels were the same. He is heavily taped with some special therapy tape on his left side to hold his joints in place and he wears his leg braces to straighten out his feet.
After clinic, we took him out for Chinese and got him some Shrimp and Broccoli. We sat in the corner of the restaurant away from people and he enjoyed it. He came back for a 3 hour sleep and woke up for supper. He is still showing bouts of frustration and complained of a stomach ache, but after a bowl movement he felt a bit better. He has been drinking more liquids and his urine is now a bit less bloody. We keep trying to give him liquids as much as we can. He tries to get up out of the wheelchair and walk, but his stamina is still very weak. We promised Lucas to go to the Roseville Mall today and get some Yu-gi-oh cards, but he was too tired. We will be going tomorrow. We pray for our friends here at the RMH and those who had to go home and always think of everyone whom we have me the last several months. We are also very grateful for all of the support and messages from everyone who is concerned about Lucas's progress.
We have a 9:30 meeting with Dr. Krivit Monday morning and are very anxious to see what he thinks. Dad and Abby come home Monday PM and we are not yet sure what to do over the next few weeks with Abby as this is a crucial time with Lucas and with infections and we are not sure if we want her to come back so soon. Godspeed!
Friday, January 24, 2003 at 01:31 PM (CST)
The last few days have been very trying. Lucas is still passing blood in his urine and is hooked up to a saline IV. His counts are holding steady. Since he is only able to go to clinic and follow that up with one therapy visit, we have to go home for lunch and then return to the hospital for another 1 hour therapy. It would much easier if he could handle all therapies at once, but he can't and we are forced to give him a break.
We finally got a rental car as we could no longer cope with the waiting for the shuttle 4 times a day. That adds up to about 2-3 hours of waiting. You must experience real cold temperatures on a daily basis with trying to get Lucas into and out of car with an IV drip, getting onto cramped elevators and walking 20 minutes in the tunnels to more elevators. We have moments where we try to deal with it and keep him happy, but it is impossible at times. His frustrations with the hectic schedule are a bit too much, but we do our best. Today it was snowing and the roads were miserable. Dad drove into downtown Minneapolis and amazingly found the Minn. State Motor Vehicle Agency to acquire a Handicapped Tag for the car. The Minn DMV is a pleasure compared to the NJDMV. Some aspects of life out here really give you a different perspective on how bad some things are run back in NJ. We sometimes find ourselves saying why can't they do that back home? Dad was riding an unfamiliar small car, on icy roads, in a downtown city and managed to get lost, but he did ask for directions 10 times and made it back to the hospital. The car is making things a bit more convenient as far as waiting, but the shuttle at least drops you off in front of your building when it would come, but the car is much better and enables us to go out and about.
Lucas is doing the best that he can and cope with everything and it remains a constant battle with patience. To a great degree, life was actually easier in the hospital when we only had to worry about getting ourselves around. One segment of the day at a time, one segment of the day at a time! (No longer one day at a time!) Once again thank you to everyone for your support and help. Godspeed!
Wednesday, January 22, 2003 at 07:57 PM (CST)
The last few days have been very hectic. Abby was throwing up on the NJ Turnpike at 5:00am but made it to Minnesota OK. Unfortunately, she kept throwing up and her and Dad had to go to the Days Inn for the night. She felt better and is only coughing right now. Lucas has had severe pain with urinating and blood is starting to come out. He was put on a saline IV drip that Mom does and is taking some more medication for his bladder and the frustrations. It is very painful for him to pee and he couldn't handle staying at supper in the community kitchen. He has gotten his appetite back but he is not drinking enough liquids. These are some trying times for him and although his blood counts have gone done, we are told not to worry at this point. The last few days have seemed to change his attitude, but we fight getting upset or down and continue to our job.
He was just fitted for his leg braces that we hope will stop his feet from turning in. He asked that they be designed like a camouflage colour. He was very tired today but managed 1 hour of each OT and PT. Battling the physical problems is one thing, but his frustrations from MLD only complicate was he has to deal with. It is starting to become a problem getting from the McDonald House to the hospital and back. With the temperature at 5 and wind chill temp. -15/-25 everyday, which is normal this time of year, waiting for the shuttle could be one hour for a 3 minute ride, but Lucas can not be outside in this weather for more than a minute. It is hard enough getting him outside, folding his wheelchair and helping him into the van with an IV drip, which by that time he is crying from the aggravation of it all. Hearing the weatherman back home in NYC saying it will stay very cold at 25 now is funny when everyday here is -15. We are deciding about renting a car or Dad just driving out then flying home to NJ. The days aren't any easier right now than in the hospital. It was great getting out of the hospital, but the nites can still be long and tiring. He has to go to clinic in the AM and because he is tired and cranky and feeling pain from peeing and having an IV hooked up to him, we all do the best we can and try to comfort him. Godspeed!
Monday, January 20, 2003 at 12:37 PM (CST)
SEE LUCAS's NEW PICTURE!
Lucas continues to move right along. He is still having pain in his left side and we canceled physical therapy today, however, he kept the occupational therapy appointment. We have no news on his blood counts as he has not had to go to the BMT clinic since Saturday. He still gets very fatigued, but his ambition to get up and walk is still strong. He gives it a try and then just gets very weak and sometimes wants to take a nap. It is starting to look like the waiting game is in full swing and we just keep checking his blood counts and have patience that all is going as well as can be expected. Mom is doing a great job with Lucas's medicines, dressings and cleaning his Hickman port. Grandma and Grandpa came home and she is back to taking the shuttle to the clinic. He misses everyone back home and is doing the best he can. Dad and Abby will be arriving very early on Tuesday and will spend the next 7 days. Once again, thank you to all family and friends who took care of them while they were home. Godspeed!
Saturday, January 18, 2003 at 11:14 PM (CST)
This will be a short update. Lucas is eating the lights out of Red Lobster and continues to gain his appetite. He does not have to go to the BMT clinic on Sunday and is keeping busy at the RMH. Grandma and Grandpa leave Sunday and Dad and Abby return early Tuesday. We are anxious for Dr. Krivit's return on Thursday and to see how he feels about Lucas's condition. We have been very pleased with Lucas's progress and continue to pray that we have made the right decision for his future. Godspeed!
Friday, January 17, 2003 at 11:23 AM (CST)
For the last two days, Lucas's blood counts have risen and it confirmed that the cord blood donor is producing Lucas's blood cells. He managed to get through his therapies and school, but each day was very tiring and to some degree frustrating for him. He is still trying his best and yesterday managed to stand for approximately 45 minutes, before his left side began to shake and bother him. He has been eating well and was able to get to the Mall of America again. At this time with the weather, we now know why the MALL is so big. We can't wait for the temperature to up to 25 so that it will be easier going outside.
Keeping Lucas infection free and occupied is the main objective now. He is taking his medications just fine and is wondering when his hair will come back and whether it will be dark and curly as was predicted by the doctors. It becomes a daily grind of anticipating his blood counts and how he feels. The slightest fever or cough and he'll be right back in the hospital. He still likes to laugh and try to do things even if he can't do it. Once again, thanks to everyone for your support with Dad and Abby back home as they return on Tuesday and thank you for supporting our "Little Luke." Godspeed!
Wednesday, January 15, 2003 at 06:10 PM (CST)
Today was a busy, tiring day for Lucas. After his morning visit to the clinic, he followed it up with visits with the physical therapist and occupational therapist and then later his school teacher for an hour. His day started at 8:00 and finished at 2:30 with little rest. He came home and went right to sleep. His blood counts are rising faster than previous days and he actually stood up for 45 minutes which was great news. He wants to get up and do what is expected of him. However, after a long day, he gets extremely frustrated and easily upset with little things. He goes through a long tiring day and the littlest of things can push him into being upset.
He continues to move right along and since the transplant appears to be generating the blood cells in his body, the main concerned which is a constant, is infection. We must strictly maintain washing our hands and avoiding sickness. His immune system is slowly building, but he still has -0- immunizations and is vulnerable to a set back if he gets sick. Once again, thank you for your support and prayers. Godspeed!
Tuesday, January 14, 2003 at 10:26 PM (CST)
One day at a time.
Today Mom was told that it is not final, but it appears that the biopsy is showing that the "donor" is producing the white/red blood cells. This is great news and moves Lucas in the right direction. He continues to return to the BMT clinic each morning so far and on Wed. he has physical and occupational therapy with 1 hour of school after the clinic. There was some talk that he may be able to skip every other day at the clinic and stay home, but we have to wait and see. Dr. Krivit will return on the 23rd and we anxious to hear in person what he thinks and where we are heading.
Lucas continues to be weak and showing bouts of frustrations, but he is eating good and getting through the day without too much boredom. Today he went to the "MALL" and got to buy some Yughiah cards and ate a good meal. He does try to stand up for a bit, but it doesn't last long. Mom and Dad are concerned if he will regain his strength to walk or will it turn out to be one of the setbacks from the BMT. Up to the time we left for Minn., he wasn't walking very much and had to be carried often, even though he worked hard at PT. But overall, the days go by a bit better and his blood counts continue to slowly rise. Thank you to all of Lucas's followers and supporters and we will do our best to keep his condition posted daily. Godspeed!
Monday, January 13, 2003 at 08:42 PM (CST)
To Note: We are moving again at the Ronald McDonald House on Saturday and will have a new room and telephone number at that time. The room is bigger and most of all has CHAIRS and a TABLE, which we don't have now and which is also needed for Lucas to sit up for his muscles and to eat.
Today Lucas went to the BMT clinic and his tests showed a few levels were low so they gave him platelets and another medication. The constant monitoring and the lowering of some levels is normal and expected. Not everyday will show improvement. We are awaiting the results of his bone marrow biopsy to see if the donor cells are generating the white/red blood cells. We can only think positive that his fast progress is a good indicator and that the answer will be yes. It helps to have Grandpa drive to the clinic so that we don't have to wait for the shuttle. The temperature along the Mississippi with the wind chill is Polar material and it is simply too cold for him in the wheel chair. Transplant recipients' body temperature runs very cold and in our room with the temperature in the 70's he is still cold.
Today, however, was his most exciting day. The mission to get him lobster and shrimp was accomplished. He ate a take out order of 3 lobster tails and an order of shrimp scampi from Red Lobster. We cannot obviously keep up this pace, but he simply devoured it and it was enjoyable to see him in his eating element. Dad and Abby made it home fine and came home to two bags of groceries donated from the Lucas3181 support chain website. We are very grateful for the groceries. Dad has a week to get his work done, before he and Abby return to Minneapolis. We are always very grateful and humble for all the support and prayers.
We try to convey in the website his progress and how things are going as best as we can. There are times we find it very difficult to put in certain things about how the disease has affected him, but we feel we must share them at this time. He will probably not regain what he has lost and has declined a bit due to what the BMT procedure took out of him. Seeing him visably weak, unable to walk much and mentally tired is difficult, but we continue to have tremendous patience and work to keep him happy and without pain. His labs and progress keep us encouraged. The frustrations he shows, we have learned to accept as normal in his MLD life. He does enjoy being out of the hospital and at the RMH. The other nite when Mom was coming back from the hospital and Dad ran downstairs for a minute to pick up a pizza delivery, Abby watched Lucas. When Dad came up and entered the room, he saw Abby with her arm around Lucas and Lucas with his over her shoulder leaning over the toilet. She had helped him into the bathroom and was helping him take his diaper down to urinate. That truly feels good to tell everyone and it made Mom and Dad very proud of both of them. Godspeed!
Sunday, January 12, 2003 at 02:21 PM (CST)
From Lucas to all his friends: " You Rock!"
Friday was a bit crazy coming home. The pharmacy was instructed to give all of Lucas's medications in liquid form and when Dad went to pick them up, half were pills, so we had to wait 'til they were done. When we finally got home, it was after 9:30 and Mom had to give Lucas his meds. With no table to work on, Mom scrambled and found out that they did not properly indentify the doses and she had to contact the pharmacy. Meanwhile, a mom Pat and her daughter, Matti, who has infantile MLD and was here before, scurried up to help us with the meds and Lucas took them as usual with no problem.
Saturday, Lucas was very weak and tired, but anticipating his grandma and grandpa arriving from New Jersey. It was also Lucas's first day in clinic for his blood work and some meds. His counts are still rising and it took 1 hour and we went home. Later on, we met grandma and grandpa at the front door and he was very excited. We showed them around and they said it was much colded here. They came over this morning as grandpa took us to clinic for his 1 hour visit. No waiting for the shuttle! Lucas is transported by wheelchair as he can hardly stand for 2-3 minutes. When he does walk a few steps, it is very tentative and weak. His left side seems weaker than before the transplant. He did not require any TPN at home as he is receiving enough calarois from eating. We are bringing him back shrimp and lobster tonight as the crew headed off to the MALL and Dad and Lucas went through the Yugiha cards. So far, we haven't needed the services of our home infusion help and are adjusting to keeping busy during the day. We are awaiting the results of his Thursday biopsy to see how the graph is taking.
It is nice to be out of the hospital and back at the Ronald Mcdonald House with much more to do. Once again, thank you to everyone for your prayers and support. Godspeed!
Friday, January 10, 2003 at 04:57 PM (CST)
This is Lucas's last day in hospital. He has been in hospital for 32 days and we are packing and waiting for his medications to take back with us to the Ronald McDonald House. We cannot express in words how we are feeling right now and how happy he is. He has a 9:30 appointment tomorrow morning as the start of his outpatient followups. He ate a lot of food today and does not need TPN (Food IV) at home. He has one line hooked up to him and Mom will probably disconnect that as she has learned how to operate his catheter and is getting used to it. It is extremely cold out today, but he'll be outside for only about 1 minute.
From this point on we still take it one day at a time and anticipate hopefully making it home by March 15, but that is up to Dr. Krivit and how well Lucas recovers. Tonite will be the first time all 4 of us have slept under the same roof since Thanksgiving and we know it will be a little crazy staying in the apartment together. Abby has made friends with Sam and Mattie Trimper, while their brother Max is in hospital. Their grandparents took her to the movies today and enabled us to pack and get set for Lucas discharge. We will keep Lucas's progress posted as best as we can, because we now have to use the RMH internet room. We once again want to thank everyone for your support and prayers since we believe that and Lucas's willpower have enabled him to get out so early. Signing off from Room 12, Bone Marrow Unit 4A for the last time Lucas "the Shrimpeater." Godspeed!
Thursday, January 09, 2003 at 04:47 PM (CST)
Today was a long day for Lucas. He woke up hungry, but had to fast until 3:00 after his bone marrow biopsy. The surgical procedure was done in his room with about 7 people and it took more anesthesia than they wanted to zonk him out. He did flinch a few times, but it took 10 minutes and it was over. He didn't complain for a second with everyone working on him and knowing he was going to have a procedure done. He finally ate at 3:00 and is doing as well as can be expected. Yesterday he ate enough that the doctors think he is taking in enough calories to not get any TPN, calorie supplement, but Mom and Dad still have to go to a class tonite to learn about giving it. He is resting quietly and smiling. He is still kind of weak and is having trouble walking in the hall with PT. They don't push it with him and said he has to take it easy.
His wheelchair was delivered to the Ronald McDonald House and we hope he can regain enough strength to walk some. He is excited about getting out early and we have started to clean out his room. We'll have to get used to schedules again and hope that he may be able to only have clinic 5 days a week instead of 7. Thanks again to everyone for your support and prayers. Godspeed!
Wednesday, January 08, 2003 at 05:09 PM (CST)
Lucas is trying to realize that he will soon have the tubes removed from him. He wishes that the Hickman catheter could come out, but we explained that they have a wrap to go around his small chest to keep it in tack. He has been taking his meds orally for 2 days now and doing fine. His blood counts dipped a little last nite, but that is normal. He ate 2 pieces of pepperoni pizza last nite and is eating some orange sherbert. Today he has eaten some chicken from the lo mein and has complained a bit about his throat, but it isn't red. He did have a crying spell this afternoon, because he wants to go home, but we had to tell him that home is Room 131 at Ronald's house for a while and hopefully the time will go fast. He doesn't want Dad and Abby to go home next week, but we try to reinforce that Dad has to work and after April, both Mom and Dad will be with him each day to help him and Abby. Dr. Krivit called this morning from Mexico and the doctors informed us that he was very happy with his progress and how he has come along so far. We still take each day as it comes and he is still being watched closely for Graph-versus-host disease.
Today Mom and Dad had their home care classes with cleaning the Hickman central line, flushing the lines to prevent blood clots and cleaning his dressings. Fortunately, our friends got us well prepared in what to expect when he comes out. Rhonda(Nathan) and Karyl (Clay) told us what to expect and nothing truly surprised us over the last 32 days and we are ready to handle the home care. As would be the case, the weather has been fairly warm and dry since Lucas was admitted on December 9 and now that he will be an outpatient and have to be outside coming back to the clinic each day, the weather is changing and the high temperature is expected to be 8 over the next few days, but dry. Once again, thank you to everyone for your support and keep praying that Lucas will continue to improve. Godspeed!
Tuesday, January 07, 2003 at 02:00 PM (CST)
Today has been Lucas's best day since December 9. His counts are up and he'll probably be discharged this Friday the 10th. That would make 32 days and about 3 weeks sooner than projected. He is eating a bit more and very alert. The doctors are extremely satisfied with him. He rode a tricycle and walked the halls twice for PT this morning. He just had 1 hour of school and did his work. With the morphine just about finished, he is happier and much more communicative. Mom and Dad have a short class tomorrow about his medications, etc. Also, he doesn't have to go to the OR tomorrow for his biopsy, as they will inject into his lines a little sedative that will knock him out for about 45 minutes and they will do the procedure here.
We have to start a new routine this weekend as he'll be expected to be at the hospital early each morning and then we'll have the rest of day to ourselves. He has been taking his oral medications just fine and knows the taste only lasts for a few seconds. We are unable to get any answers concerning his prognosis from the doctors and were told to wait until Dr. Krivit contacts us. At this time his long term prognosis may not change much as we understand that he will always take one day at a time for the rest of his life and we will be very grateful for each of those days. We are starting sense that our decision last year to go ahead with the transplant, as difficult as it was, was prudent and that the crucial days may be behind him.
Abby went to the zoo today with our friends' grandparents and she has been doing very well here. She is very independent and helpful with Lucas. We know so many people have been praying for him and sending so much support and messages that in relaying the above information on his progress, we know it was made possible due to your help and Lucas's fighting spirit.
Godspeed!
Monday, January 06, 2003 at 04:09 PM (CST)
Thanks again for encouraging Lucas!
His WBC was 1.2 and his Absolute Neutrophils, another important count has also been rising steadily. All is good news for him and the best was that today he got to leave the room and take a walk around the pediatric BMT unit. Wearing his trusty filter mask, he left the room, but was very stiff and when he got back, he fell asleep for 3 hours. Mom and Dad start discharge lessons this Wednesday and on Thursday he has his biopsy. There was some talk about a Wednesday discharge, but we felt that he is too weak and not yet eating enough to leave. We have to wait and see what happens and we haven't heard from Dr. Krivit since he left.
Lucas is gradually getting his wit back and when he does get out of the hospital, he'll still be coming here everyday for tests and labs until approximately April they are telling us. We'll probably get him around in a wheel chair for now and he'll have to wear his mask for atleast a year. We are extremely pleased with him and he has been so encouraging to us. Our friends the Trimper's, little boy Max, was admitted today and they got to see Lucas and were very encouraged to see how he was doing in such a short period of time. We are all told estimated days for hospital and outpatient stays and to see someone about 3 weeks ahead of the estimates is inspirational. Godspeed!
Sunday, January 05, 2003 at 09:44 AM (CST)
Today is early Sunday morning and Lucas's lab results just came in. His white blood cell count has gone to .9 and a strong sign that his immune system is coming back. Overall, he will have a weak immune system for some months from now, but the daily increase in the count is great news according to our doctors. His other counts are holding firm and steady. The doctors also asked Lucas if anything bothered him or any pains and he said no. They said his overall charts show he has been a strong willed patient and a fighter. They precisely want to know what if anything bothers him, but he usually answers no. He is still spitting and receiving Lasix to make him urinate, but he slept through most of the nite.
He is scheduled for his "biopsy" or self-bone marrow harvest this Thursday and will probably leave the room to go down to the OR. It should be a short procedure, but he'll have his lower back poked again. He is "truly" encouraged by all of the prayers and well-wishes from everyone and even though he is still a bit quiet, he does manage to laugh and react to the postings and emails. After learning of the Jets win yesterday, he managed a slow soft
"J - E - T - S, Jets, Jets, Jets".
Just a few minutes ago, the doctors came around again for their rounds and informed us that they are very impressed with his recovery and vital signs at this stage and feel that Lucas may be able to be discharged possibly by next Sunday, about 3 weeks prior to what we were told back in early December. This has perked him up a bit and we told him he worked so hard to hear that news. As an outpatient, he'll still have to come to the hospital 7 days a week for tests and take his medications orally and be more cautious of infections, etc., but it is great news.
Godspeed!
Saturday, January 04, 2003 at 02:54 PM (CST)
Thanks for all of the messages and support for Lucas.
He is gradually getting more alert and talkative. The lab results came in this morning the white blood cell count was up to .8 from .6 and that is a tremendous jump and very encouraging. His platelet count is also rising with the WBC and that was great news. If he can keep this going, the tubes will be removed and he'll be able leave the room for walks in the hall and our immediately goal is just to see him walk through the doorway to his room. The doctors visit this morning was positive and we just continue to wait and monitor his progress. Dr. Krivit is on vacation for 3 weeks and will hopefully be checking in to let us know what he thinks of Lucas's progress. We still try to get information on seeing if Lucas's prognosis has changed and what we can expect at what stages in his life if this procedure turns out better than anticpated, but are told it's too early to tell. He is trying to eat and still has some problems swallowing and has to spit a little less frequently.
His morphine has been reduced to the point when he first started receiving it a few weeks ago and he still receives medication to help him urinate, as that is still watched closely. Dad and Abby arrived late last nite as they were only delayed 1 hour. They woke up here in Minn to icy sidewalks as a little glaze of snow fell overnite. Abby is getting used to the frequent flying, airport and visiting Lucas. We enjoy being together as a family and don't look forward to the next time Dad and Abby have to depart. We will stick to the routine of bringing her home for school and other activities and to keep Dad company.
Godspeed!
Friday, January 03, 2003 at 12:50 PM (CST)
Today, Mom was woken up by Dr. Krivit and informed that Lucas's white cell count was now .6 and the target for the transplant/graph to work is .5 and that is promising news. He still has some nausea and some spitting. Lucas remains very tired and weak, however, he got up for his therapies today. He continues to handle the discomfort very well and fight on. He still has the monitors beeping and going off periodically which causes sleep to be a problem. Next week he will go back into surgery for short a self-bone marrow harvest and this will tell the BMT doctors how well the graph is working and how far along it has come.
Sam has been getting some visits from both of our family volunteers and this has given her time to change, shower and step out of the hospital for a bit. Dad and Abby will be back in Minn today only if the weather doesn't play too much havoc on the airlines and delays. Thanks again to everyone for your support. Godspeed!
Wednesday, January 01, 2003 at 06:40 PM (CST)
Happy 2003 to everyone!
We are starting out the new year look thinking positive and watching Lucas slowly try to gain his appetite. Today he managed to eat 6 pieces of large shrimp from the Village Wok, our local Chinese restaurant. He ate them and they stayed down. His mouth sores still bother him but he manages to occasionally swallow and to avoid spitting. He still has some nausea, but he is battling back. According to the doctors, Lucas's protocol was actually changed from past experience and BMT's. They tried changing his chemotherapy we were told and had hoped this would increase the opportunity for his while cell count to increase faster. It appears to be working.
On this first day of the year, he played a few games and was a little more alert. He is still very tired and weak, but he asks to get up and stand for a bit. We believe he has watched Lilo and Stitch 17 times in one week and wants to visit Hawaii some day. He is enjoying his therapies. He must always maintain physical and occupational therapy to battle the constant tightness MLD is causing. When he walks around the bed or to the shower, he is walking more on the flat of his foot. If he lets up on the therapy, the tightness will only get worst and won't be reversable. We enjoy reading all the website postings and emails and we can't put into words how much he enjoys listening to them as it allows him to hear the outside world and words from everyone who is supporting him. We read Lucas the Dec. 29 article by Mr. Baldwin in the sports section of the Press and how it ended with the encouraging words about Lucas and Little Silver. It is important to us to constantly thank everyone for your support, because it really does encourage Lucas and us to take on a new day.
May we all have a happy and safe New Year! Godspeed!
Tuesday, December 31, 2002 at 10:08 AM (CST)
Happy New Years from room 4A-12!
Lucas is battling right along. We were told this morning that his white cell count is .5, the majic number for him to move onto the next phase. If he can maintain that for 3-4 days, all the tubes connected to him will be disconnected and he'll receive medicine through his Hickman port in his chest and orally. That sometimes is not easy since he'll be receiving dozens of pills that taste bad. We are telling him that anything is better than having several tubes tied to him. He is still very quiet and his mouth and throat are still sore. He rested nicely over nite. His vital signs are where they should be, however, he is not eating. He obviously requested shrimp and lobster when he gets better. He is keeping us upbeat and hopeful each day and got up for speach and physical therapy.
Mom met a family from Michigan last nite and they were able to share stories. We become the mentor for the next families as Lucas will be the only MLD patient and that becomes our job for Dr. Krivit. The family has a 7 year old whose symptons and way to diagnosis was very similar to Lucas's. They also have 2 younger children who were diagnosed after the entire family had to be tested, but they are with their son Max now to have a BMT. We hope to help them as much as we can. They did much more research than us and found that Dr. Krivit is the only one capable of helping. It is a small club that no one wants to belong to with MLD, but we all help each other. You learn fast how research and money can help find cures, but the mainstay diseases and illnesses that get publicity tend to do better is this country. Our hopes are with the few dedicated individuals like Dr. Krivit who give their lives to help children like ours. The more rare and deadly the disease, the least money and least research afforded by the government and science community. But that won't stop Lucas, even through the ups and downs of his life.
Godspeed!
Monday, December 30, 2002 at 10:54 AM (CST)
We missed a day, but as of Monday morning, Lucas had a few good nites sleep and except for his temperature dropping to 95 and gaining a little weight (weight means water retention), he has been doing better. He is still weak and tired, but he is aware a little more. His swallowing still hurts and his morphine was increased again. His white cell count is still below what it should be but the vomiting, diarrhea, high temperatures have subsided for now. They are closely wathcing for Graph-vs-host-disease, but so far so good. His CT scan came back negative and that rules out a lot of complications. His rash is still there, but that is actually pretty good and showing his system working on accepting the graph. His elbows are feeling a little better and he is now doing physical therapy. He can stand, but his mobility is limited to the pole and tubes.
He is truly enjoying his farting phone in his room, as every call we gets makes his favorite noise and gets a rouse out of the hospital staff. He is starting to swell a little from the steroids, which is normal but overall he doesn't complain much and takes each day in stride. Mom, Dad and Abby had an 2 hours of free time on Sunday with our family volunteer here and we investigated the U of M campus a bit. We found a few other places to eat and Abby has been her busy self. Dad and Abby come back to NJ New Years Eve and then after 2 days of school, back to Minn. Mom and Dad are getting a little more sleep with him at nite. As Lucas sleeps, so does Mom and Dad. Once again, endless thanks to everyone for your messages and support. Godspeed!
Saturday, December 28, 2002 at 10:47 AM (CST)
Today is Saturday and quick update. Lucas is hanging on and battling severe temperatures. He was up all last nite with a fluctuation from 104 to 106. He had ice packs and cold compresses. He vomited blood a few times last nite. It wasn't until 5:45 am that he received Demerol and that reduced the fever and finally put him to sleep. He had a few hours of sleep then a nice bath this morning, but these days he remains very quiet. The mouth sores still bother him and his level of wit has decreased, however, the doctors are still happy with his progress and he is now watching cartoons. The process of building white cells and holding off graph-versus-host-disease is tiring and tough on him. He just keeps going on, doing what is asked of him. We keep right by his side waiting for the counts to go up and trying to keep his spirits up.
The rest of Saturday was a very tiring and long for Lucas. He didn't really smile much today. He is being closely monitored for the Graph-vs-host-disease and is showing signs on his skin of a rash that shows signs of a minor infection called engraphment syndrome when new cells come in and release something into the body. This is all showing that his body is trying to host the new transplant. They may do a CT scan to see if any infection. He is fighting hard and we hope for a good sleeping night for him. He gives us a look that says "I'm tired of the pain and want to go home." There isn't much for us to say to him, but to hang in there and it will get better. Godspeed!
Friday, December 27, 2002 at 07:14 PM (CST)
Today was a very tiring day for Lucas. For the first time, we saw him sit down for physical therapy after 15 minutes. He has been running a high fever all day and they are monitoring it closely and giving him tylenol. He has been swallowing more, however, his mouth and system is still very sore and weak. They have doubled his morphine dose, however, he is still taking a low dose. Dr. Krivit paid him another visit and said Lucas is where he wants him to be at this point. Dr. Grewal stopped by and said that Lucas is suffering from the normal side effects of the BMT at this point, but he has a good tolerance for pain. He didn't want to watch TV all day until now and he did manage a little occupational therapy this morning and made Mom a nice little snowman. We are still giving him his mouthcares and they are a little struggle. He is battling feeling tired, pain and boredom. We promise him when he is out of the hospital and then an outpatient, some trips around the area to get out of the RMH. Abby was very good today and looks after her big brother. Godspeed!
Thursday, December 26, 2002 at 06:12 PM (CST)
Today, Lucas woke up with razor stubble on his pillow and his head was itching for a while. He has been running a fever and the tylenol has been able to bring it down each time. He is still having a tough time swallowing and hasn't eaten anything today. His elbows have been raw and very sore for sometime now. They have special bandages applied on them each day. He is still taking morphine, but today was not one of his upbeat days. We think he wonders about things, his disease and going home. He handles pain really well, but his spirits sometimes get down. The frustrations that MLD causes can be worst than his physical sickness. He has real highs and then a few real lows. It is different for us trying to keep Abby busy and today we had to do different things to keep her going, but they may become old hat. He is still moving along and this whole process eventually becomes a waiting game. Godspeed!
Wednesday, December 25, 2002 at 09:39 PM (CST)
Merry Christmas!
The Eagle has Landed! Lucas has loss his hair and Mom, Dad and Abby helped out in pulling some out, as per Lucas's request and nurse Sarah shaved the remaining bits. Dad and Abby arrived 1 1/2 hours late due to the weather, de-icing and strong turbulence for 90% of the journey to Detroit and then to Minneapolis. Abby enjoyed the airplane, even though everyone else was a little uneasy.
It was a great moment when Mom saw Abby and Abby saw Lucas. She said she loves him and missed him. Mom got a big hug and a big smile from our little bossy boots. For the first time in ages they didn't fight or nag each other. There were plenty of gifts at the RMH for Lucas and Abby. Our gift sponsor was the Dowd family. Jim Dowd, from Brick, NJ plays forward on the Minnesota Wild professional hockey team. He played about 4 seasons for the NJ Devils. He gave Lucas 3 pictures and his wife left their home phone number for us to call. They would like to visit Lucas so that Jim can sign his pictures. Like everybody back home, the people here are also 1st class. We have felt very fortunate to have so much support through Lucas's ordeal and we will never be able to truly thank everyone the way we would want to.
Lucas had overall a pretty good day. He vomited a few times and once when Santa Claus stopped by. Lucas told Santa "I have to hurl" and Santa said "I usually call it yack" and Luke laughed and vomited at the same time. He still needs suction as swallowing is still tough. But he is doing better and the effects of the chemo are subsiding. He thinks it's cool that he lost his hair. He is now getting plateletts and other medication as his white cell count is not where they want it to be. This is kind of normal one week after transplant. He enjoyed his gifts, but was a little to tired to really play with them. He sleeps better now and Dr. Grewal is overall happy with his progress. One day at a time is the old saying and we truly savor a good day which we hope brings him closer to coming home. Thanks to everyone who took care of Abby and Dad while they were home and to everyone who writes, sends pictures from home and school, emails, sents gifts and reads this site. Godspeed!
Tuesday, December 24, 2002 at 07:36 PM (CST)
From Lucas and his family to Everybody - Merry Christmas!
The Viscomi's will be together tomorrow at 11:00 a.m. CST. We are looking forward to being a foursome again.
Today was one of the better days for Lucas. His liver enzyme level came down to a level of less concern. Dr. Grewal our BMT specialist, with Dr. Krivit, paid Lucas a late afternoon visit and after 5 minutes said that he is the happiest patient on the floor, even though he has had such a rough time like the other kids. He told Sam he is amazed how strong willed he is and able to still be happy with so much pain. Lucas has also started losing his hair. With Dr. Grewal there, he started pulling it out and laughing eat time he yanked some out. The doctors are waiting for Dad and Abby to come out tomorrow to have a "haircutting ceremony" where they will shave his remaining hair off so that it doesn't get messy. They are still monitoring him closely and he gives us hope with each passing day.
We know it is a long way to April when he comes home to see everyone, but at least for now from Minneapolis, the generosity and support of our friends, family, neighbors, Little Silver School System, Little Silver Police Department, Jason's Dreams for Kids and strangers who have helped Lucas, has made us humbly grateful and we pray that everyone has a peaceful New Year. Godspeed!
Monday, December 23, 2002 at 09:32 PM (CST)
Lucas was very tired and weak today. He is still suffering from vomiting/nausea and is struggling to swallow. He is still receiving some heavy doses of morphine and needs his mouth suctioned often. His blood work showed that his liver enzymes are very high and a second test was done to see if that was accurate and it came out a little lower. This has the doctors concerned and they cut out one of his medications to see if that was the reason. They will closely monitor this and we hope it doesn't lead to any complications. Overall, he is fighting hard and hanging in there as best as he can. The next 2-3 weeks are very important as this will tell if the transplant has a chance. Any abnormality with his system is reason for concern and that is why his labs are done so often.
Abby will be arriving Christmas Day and we are really looking forward to being a family again. She has been her self the last few days which is good news. We believe she has come back from feeling down and won't leave Dad's side.
With Christmas coming on Wednesday, our family would like to wish everyone a terrific Christmas Day and a Happy New Year. It is our Christmas wish that everyone be positive and enjoy the holidays, because we plan to. We have realized that our mission to help Lucas every second keeps us so busy that we don't have time to feel down and we are always trying make him and ourselves remain upbeat no matter what our circumstances. His fighting this disease has truly given us the optimism that he will make it.
Godspeed!
Sunday, December 22, 2002 at 07:04 PM (CST)
Today has been a tough day for Lucas. The sores in his mouth, throat and intestines has gotten more painful. They brought in a suction tube because he is struggling to swallow and they increased his morphine dosage. One good sign is that his diarrhea has gradually gotten better and his diaper rash is not as bad. He still is eating some white rice and fighting nausea. They are also medicating him for the nausea. Sam has been pulling the entire workload with Lucas and that is very draining without any relief. Today, Sam was able to take a shower and got some time back at the Ronald McDonald House (RMH) when Mrs. Berman, our family volunteer came to stay with Lucas and gave Sam a break. If nobody can relieve you in the room, you're stuck. We must be with Luke at all times, unless the nurse or aide can stay a few extra minutes. We cannot even use his bathroom and must use a special family toilet down the hall. You have to wait and sometimes when you get to go, someone else is using it. We are getting used to the routine, but we are still trying to get used to seeing Lucas struggle and cope, we may never get used to it. He told Mom today, "Why do I have this disease and why is my sister a carrier." He is a little more perceptive than what he is given credit for.
Dave is now home with Abby. Abby is doing much better and her old self. They both come back out to Minneapolis 6:00am Christmas morning and we are looking forward to being together as a family for the first time since November. Any other flight this week would cost about $1,500 each so leaving Christmas helped. Abby and Dad will be traveling back and forth each week. We are glad that everyone told us their concerns with her, because it helped us realize how we really have to approach keeping our family bond together under any condition. Once again thanks to all checking in and all who support and pray for Lucas. Godspeed!
Saturday, December 21, 2002 at 09:46 AM (CST)
After Lucas's transplant, he continued to vomit and have severe diarrhea. He was still tired, but alert and able to have physical, occupational and speach therapy. He has bouts of frustration, however, remarkably still manages to laugh and want to eat. Even after vomiting, he still requests white rice. Normally when kids are vomiting, you don't feed them anything, however, he is encouraged to try and eat by the doctors.
Through Friday, he was not feeling very good and the chemo was starting to cause sores in his mouth, throat and intestinal tract and they started a minor dose of morphine through his IV. He has dealt with a lot of pain, however, the doctors started the morphine since he will have severe pain over the next few weeks.
On Friday, we had concern that Abby was becoming depressed and missing us, so Dad got the first stand by flight home to be with her. She was so excited to see Dad at the airport. It was a difficult decision for one of us to go home and for only one to take on the burden of taking care of Lucas, but Mom is now taking the full load of caring for Lucas around the clock. Dad is now with Abby and she is happier. Our family and friends were gettng concerned that the last few days she was getting quieter and really missing us. Here tone on the phone was not the Abby of the first few weeks of our stay and she asked to see us immediately. We had hoped she could hang in there longer, but we now plan for Abby to come out for one week and stay with us and go back to Little Silver with Dad the other week so that he can get work done and she can go to school. This travel is possible due to the generosity of our friends donating their air miles to us and making it easier to get back and forth more often. Thanks again for the continued love and support from everyone. Godspeed!
Thursday, December 19, 2002 at 07:24 PM (CST)
It is 7:24 central time and Lucas just completed his stem cell transplant. The transplant went through the port catheter in his chest like his chemo and it went very smooth with no glitches. His nurse Jen, (which was her first transplant) did the procedure and Erin, his other nurse assisted. The hospital chaplain was present to bless the room, the cord blood and Lucas. We both read a prayer. Up to this point Lucas was very figity and resting uneasy, partially because of fear of the transplant. He really didn't know it would be that fast. He is still receiving excessive fluids to flush his body and it is causing severe diarrhea, but no vomiting today. The staff will monitor him even more closely now that he has been transplanted and we have to pray he does not develop Graph-versus-host-disease.
Lucas has come a long way and he has been very courageous. The nurses all made him a picture for his door and they all signed it with some special comments. We know this is not a cure, but it gives us much more hope today than yesterday. Every addtional day we can get with Lucas from all of this hard work by him is a priceless blessing. Godspeed!
Thursday, December 19, 2002 at 09:44 AM (CST)
For the rest of Wednesday, Lucas had his normal diarrhea and vomited twice later in the evening. He went off the tougher medication, however, the hospital staff was treated a rare performance by the skinny little 8-year old on benedryl. Lucas normally gets hyper when he is given benedryl and after watching the movie "Lilo and Stitch" 5 times he went on a comedic whirlwind. The nurses and doctors inside and outside his room were laughing histerically and so were we. We were laughing too hard to remember everything, but it was good for his spirits before the let down came.
He had a pretty good nite and slept through it, although his monitors went off regularly. He did have severe diaper rash and as of this morning he said it felt OK.
Today is T-Day. He'll get his stem cell transplant around 1:30 pm and still receive daily his graph-versus-host-disease medication. His body has been beaten and his system eliminated and they said he is ready. Infection now becomes the No. 1 enemy and we must pray it stays out of the room.
Once again thank you for everyones prayers and support for Lucas as he has been so brave. Godspeed!
Wednesday, December 18, 2002 at 11:27 AM (CST)
It has been a few days since we have updated the website. Things got a little hard for Lucas the last few days and on a very minor scale for both of us. Lucas was plugging through his chemo, still very weak and sick, but Mom and Lucas celebrated on Tuesday with his last dose of chemo. He then started ATG which suppresses his immune system and helps gets his body prepared for the transplant which takes place Thursay at 1:00. The chaplain will be in to bless the transpant. Tuesday nite he spiked a high fever was given tylenol and was cooled off with ice compacts, but he came out of it OK. This morning he had physical therapy out of bed and was playing tennis. He enjoyed it as we were playing a kind of basketball game with the rackets, however, the basket was his vomit bucket and he let go with the very loud, extended laugh we haven't heard in about 10 days.
On Monday nite, Dave was vomiting & sick and went to the ER 4:00 Tuesday morning. He had a stomach virus which several other people had, but after catching up on some overdue sleep, he was allowed back into Lucas's room today. Sam pulled 3 days straight and 2 nite duties and was pretty zonkered out this morning. She did get some sleep at nite.
He is hanging in there very well and the nurses have told us that he has been one excellent patient and amazingly bounces back from his sick spells. We have not found any words to write down how to describe his courage, except that the staff here is very impressed and so is Dr. Krivit. He is very proud of Lucas. On Monday Harold Morrow, #33 of the Vikings came to visit him. We wrote 32-31 WIN on the door by Luke's name, the score the Vike's won by the nite before, MR. Morrow was impressed and spent 30 minutes with him. We had a fantastic talk and he gave Luke a autograph pennant and a Randy Moss doll. We hope to keep the site updated as best as we can. Godspeed!
Sunday, December 15, 2002 at 06:16 PM (CST)
Lucas didn't have much of an appetite today. He did do better today than yesterday. He is keeping up with the urinating, however, he fights us and the nurses with his mouth rinsing. We have to stay on top of cleaning his mouth so that the sores that will be affecting his mouth and intentestinal tract won't be so severe. If he has complications in those areas, they usually prescribe morphine to ease the pain. He is still very sluggish and weak, but he only had a few sick spells today. He looks very thin, red around the eyes and pale. He slept very good last nite even though they had to wake him up constanly for peeing. We have watched a few videos today and played a few games of Yugioh Cards. We are getting used to the routine of the day and getting sick of the food already. We had a choice the last few days of Sloppy Joes or Sloppy Joes and after a long debate, we didn't feel much like eating tonite. Once again, thanks for all the emails and website postings as they really give us something to look forward to each day. Also thanks to everyone for prayers, support, fundraisers and keeping after Abby. Godspeed!
Saturday, December 14, 2002 at 02:42 PM (CST)
So far today has not been easy for Lucas. He did have a decent nites sleep and ate some fruit loops this morning, but that was it. He started his next chemo and he has been feeling very sick since then. The diarrhea, vomiting and urinating come fast and sometimes all at once with no warning. The nurses were proud of him that he managed to at least make it to the bathroom before all hell broke loose. It is hard to move the IV pole which has 4 machines attached to it with several wires and several tubes attached to his chest. He was able to stay in the bathroom and take a warm shower. He is very frustrated with everything and wants to go home, but we calmed him down with a lego and now he is only a little upset. You learn that anything can happen at anytime and anywhere in the room, but there are plenty of towels, sheets and pajamas and the room was sanitized quite fast. As the night has worn on he has gotten sick a few other times and they have tried to medicate him more. He is very close to a fever and is being monitored cloesely. If he spikes a fever, he'll be taken in for chest exrays asap. He's a trooper and we can't begin to say how proud we of him and his tolerance in these conditions. Godspeed!
Friday, December 13, 2002 at 06:30 PM (CST)
Since our last update, Lucas had a few dry heeves this morning and was given medicine to sooth his stomach and he hasn't been sick since then, however, he has been a bit weak. He had physical, occupational and speach therapy consecutively this afternoon and he did OK. All 3 definitely enjoy their time with him even though he's not the old Lucas, but there are a lot of laughs. He starts his next course of chemotherapy tonight, cytoxan early Sat morning. We will have to have him urinate every 2 hours for the next 5 days to prevent an infection in his bladder that could cause severe complications.
Many of our friends at the Ronald McDonald House keep in touch with us to see how he is doing and sharing stories. One of us goes back for supper each nite to bring it back. We still find the strength to pray and care for them and their children. The days are going by fairly fast as we keep ourselves busy with Lucas. However, we are a little burned out from the cartoons. There is no Nickalodeon. We have realized that we must keep positive and not look no further than the next day. That is the only way to deal with MLD and its effects. Godspeed.
Thursday, December 12, 2002 at 04:19 PM (CST)
So far today Lucas has had a quiet day. They raised his chemo dosage because his labs indicated that his blood count is a little too high based on what they have given him. They need to increase the dosage to more rapidly eliminate his own bone marrow so that the transplant can take more effectively. It is a juggling game to get it right. They are constantly taking his blood to manage it properly. So far today he has eaten a little, but still no nausea until about 5:00 pm, before supper in which he got sick twice. He is taking some medication to offset the nausea at this time and he is getting weaker.
At 1:00 the hospital TV station had bingo and a question session. Lucas called in the answer to a song and sang it very loud. It was very funny since he only had to give the name of the song. They played bingo and he had fun. He received an email of his picture with some friends from back home today and that made him happy. Just hanging out with him and trying to keep him busy with games and computer programs. Godspeed!
Wednesday, December 11, 2002 at 06:45 PM (CST)
Once again thank you for all the messages and letters. Today has been a so so day for Lucas. He is finishing his second day of chemo and he still has a good appetite and ate all 3 meals served him today. He started physical therapy and got tired after 20 minutes, normal for the 2nd day of chemo. As the day has gone on, he has started getting weaker and having trouble standing up, but still in pretty good spirits with everyone. He starts speech and occupational therapy tomorrow.
He has 4th floor bingo at 1:00. We received in the mail the article in the Press last Sunday and the nurses copied it and placed it at the main nurse station. Also, after having his name listed with Derek Jeter, I was able to run over to the Ronald McDonald House and pick up supper for Sam and I that was being served by Kevin Garnett of the Timberwolves. There were lots of TV cameras and Lucas's friend Clay from Wyoming was on TV making a cake with him. I had to come back to the hospital and managed to get Mr. Garnett to sign Lucas's Timberwolves cap. He wrote "Stay Cool Luke, Kevin Garnett" and told me to tell him to stay strong and positive. He was happy to get an autograph of someone we saw on TV Monday nite against Denver.
Godspeed.
Tuesday, December 10, 2002 at 03:27 PM (CST)
Hello and thank you to everyone who checks in and has written Lucas. We read him the messages each day. He started his chemo (busulfan) last nite and so far he is doing just fine. Dr. Krivit came by to visit and informed us that he is still battling with the FDA. He was very surprised that Lucas didn't need any pain medication post surgery and he hadn't seen that before. Hopeful that his body will tolerate the next 4 weeks. Today he is more alert and complaining which means he is on track even after several doses of chemo. He is still his old joking self with the nurses and therapists. He starts speech and physical therapy tomorrow. If he is going to feel sick from the chemo, it could start as early as tomorrow. Sam and I hope that he may luck out and not feel so sick from the chemo.
He still has an IV drip and has to pee about every hour which is very good to keep cleaning his system. We have a bed in the room, but Sam still had a long nite. For info purposes, about 30 kids have had BMTs for MLD in the last 20 years here at Univ of Minn. It is the best facility to perform the BMT and so far everyone has been very nice. Our hands are drying out from the constant washing, but we have to keep him clean and safe. Once again Lucas really appreciates the messages and we also enjoy reading them.
Godspeed.
Monday, December 09, 2002 at 02:29 PM (CST)
Lucas woke up at 4:30 this morning and put on cartoons. We got him to the OR at 5:30 and he was visited by several doctors and was asked a lot of questions. His anesthesia set up went fine. The bronchostopy was done by Dr. Greenwald, the port line into his main artery was by Dr. Gomes and Dr. Grewal did the spinal tap and the bone marrow harvest from his side. It took 2 hr 15 mins and we saw him in the recovery. He was very groggy and had a little problem getting oxygen to the point he would be allowed to go to the BMT unit. Once his oxygen level came up, he was let go to room 12 on the 4th floor of the bone marrow unit. His room overlooks the Mississippi River and a bunch of dormitories.
He is resting nicely and still a little weak, but not complaining of any pain which is very good. He has already been examined twice and we were asked a lot of questions. So far everyone he has seen has been nice and he has managed to jolt out a funny comment here and there for the staff. We are extremely proud of him and he knows the chemo is coming tomorrow. He is aware that it could make him very sick, but so far he has taken every task courageously. Sam will take the first shift tonight sleeping with him, but we both plan to be in the room with him the entire day. Godspeed.
Sunday, December 08, 2002 at 01:08 PM (CST)
Today is our last day together at the Ronald McDonald House. After Lucas's surgery tomorrow morning he will be admitted to the BMT floor and start chemo on Tuesday. We will be with him everyday in the hospital and take short breaks to come back here to the McDonald House to shower and pick up food. He is doing fine and so far isn't showing any fear of tomorrow's procedures. He still asks us why he needs the BMT. We are concerned, but yet thinking positive that he'll be strong and get through it. He has met other kids who have made it with other diseases and we think he sees how well they are doing and playing.
Today we are planning to go for a walk thru the campus and get some fresh air. Just in case the week starts out hectic and hard to adjust to for us and we don't keep everyone posted, we will try our best. We again can not begin to thank everyone who has written him, everyone who has helped us back home with Abby, the supporters with the fundraisers and the prayers. Godspeed.
Friday, December 06, 2002 at 06:10 PM (CST)
Lucas had a good today. Dr. Grewal of the BMT unit met with us this morning. He went over all of Lucas's tests for the week and he is ready to start Monday. The Osteoperosis is fairly normal for MLD and the EEG/EMG Test (a nerve velocity test to show how fast the nerves send messages) was low and consistent for his disease. Everything else came out normal and tells the Doctors that he is ready. Today, we had a tour of BMT unit and went into the OR to get him familiar with it. He told the head OR Nurse on duty that this is where he want's to work someday. He found it strange from when he watches it on the Discovery Health Channel and is still looking for cameras.
He starts chemo on Tuesday and today's meeting was to inform us of all the possible side effects of the drugs and what they can do and the risks. Dr. Grewal said he is very conservative but feels Lucas will do fine with little complications. Dr. Krivit is in Wash, DC with the FDA trying to win approval for a stem cell transplant to help the muscles and motor skills. Lucas's current procedure will help stabilize his cognitive abilities and isn't really at the point to help stabalize his physical decline. We have found out that DR. Krivit is planning to see if Lucas would want the new stem cell if they get approval and he could go into medical journals and studies with the procedure. Godspeed!
Thursday, December 05, 2002 at 07:09 PM (CST)
Today was Lucas's easiest day. After meeting with our family care worker, Lucas had a 10 minute MRI and he didn't have to be sedated. He kept very still. We then got a cab to the Mall of America in Bloomington. We went to the Underwater acquirium, pick up a few things and ate at the Rainforest Restaurant. He had to wear his mask except to eat and he did notice people looking at him more. After getting lost (it really is a big mall) we came home where he jumped into arts and crafts. We picked up a Minnesota Timberwolves and Vikings cap for his room. Kevin Garnett and the Timberwolves are coming next Wednesday to serve food here at the McDonald house, but he'll be in hospital receiving chemotherapy. I hope to come back and get his cap autographed. The next week the Vikings will be on the BMT floor to visit the kids so we hope to get more signatures on his cap.
Monday's procedures will be about 5-6 hours under general anesthesia and then he is admited. Germs and bacteria will become the main obstacle at that time. He is a little tired and cranky, but we are keeping him laughing and busy. We are keeping our hopes high that all goes well.
Godspeed.
Wednesday, December 04, 2002 at 04:09 PM (CST)
Today was another long day for Lucas, but nothing that caused any pain. He had his pulmonary functions tested and he did very good. That means his lungs and respiratory system are operating OK for the procedure. After a few other meetings with our social worker and the BMT nurse coordinator, he went over to oncology. They performed a bond density test which unrelated to his disease showed that he has Osteoperosis and will be dealt with by medication. They were surprised he has never broken any bones, etc. We had to wait around for him to give another urine sample which took a while.
Tomorrow he has another MRI at 11:00 and we're off to the Mall of America where will be in Lego Land. He has to wear his special filter mask in public now. We had a few snow flakes today, but we're getting use to the high temp of 18, but it will warm up to 21 this Saturday. We hope the snow storm back home isn't that bad for everyone. Godspeed.
Tuesday, December 03, 2002 at 06:39 PM (CST)
Thanks for all the letters so far. It has been a busy Monday and Tuesday. Luke had some tests and visits with some Doctors. He had a tough test this morning called an EEG,EMG which sends jolts of electricity through certain joints in his arms and legs. He made it through the first hour, but the last 15 minutes he lost it. The test showed he has below normal impulses sent from his central nervous system which goes along with MLD. We got his chart today. Next Monday is his procedure for his central line, spinal tap,bone marrow extraction (in case the transplant fails, they can inject his own marrow back into himself) and lung test. He starts chemo next Tuesday until the 19th when he receives his stem cell transplant. They have a really good match according to the profile. He'll be in for Christmas Day. We have learned our job for the next year, but we'll do what it takes for him. Luke is calling the procedure a "Bow n'arrow transplant" and the doc's have had a laugh. He is very irritable towards the end of the day and figity with biting spells. Santa Claus came last night and he was extremely excited. Since Dad carries so many bags during the day he has started calling me "Bag Dad." Abby is fine back home and Sam is meeting many friends here. Godspeed.
Sunday, December 01, 2002 at 01:02 PM (CST)
Our plane ride was very smooth and the 12 peanuts each we got with the half of cup of juice was very nourishing. We arrived Saturday night in Minneapolis. It was 22 degrees and this week is expected to be highs of 20 a bit below average. We arrived at Ronald McDonald House and spent the nite unpacking. Our room is conveniently located and the space was just right. Lucas spent the nite watching Jimmy Neutron and cartoons. He slept until 9:30 and woke up saying when do we go to the playroom. Today is a day to take it easy, shoot some hoops, watch some videos. Tomorrow morning is his first appointment with Dr. Krivit at 8:00 and the week starts with a busy schedule. We met this morning our friends from Texas and Nathan who is 16 and doing fine. The other family we met with a 5 year is doing fine with her transplant. We are awaiting a call from a family in Michigan who wants to talk to us on how we managed to get to this point and decide on the BMT. Lucas and Abby have spoken 3 times so far and are missing each other to nag at.
Thursday, November 28, 2002 at 09:13 PM (CST)
This Thanksgiving was a great day for Lucas. We took him to a high school football game at Lafayette College in Easton, PA between my alma mater Phillipsburg, NJ and Easton, PA. After meeting with his uncle Rutt at Mr. Rambo's house for the annual pre-game celebration, everyone greeted him warmly. At the game, with 20,000 in attendance, Lucas and I were allowed to stand on the sidelines with P'burg thanks to Mr. Thompson an old friend. He took many photos' and was on live television several times according to family. P'burg won 25-0 and at the end of the game, we ran onto the field with the team and student body. He was extemely happy and thrilled. He went back to his Aunt Kathy's house for supper and to say goodbye to his family.
We arrive in Minnesota on Saturday and next week he has numerous tests and another MRI. On Dec 9, he will have a spinal tap, bronchialostipy, harvest backup bone marrow & the central line catheter put his chest. He is still in good spirits and eating plenty of shrimp.
Sunday, November 24, 2002 at 07:09 PM (CST)
Today Lucas and his Dad each received a beautiful buzz haircut from Mr. Dengler. He knows the chemo/radiation will make his hair fall out so the shorter the hair the less he'll miss. We have received his schedule for the week of Dec 2 and it is very busy. On Dec 9, we believe he will have the short surgical procedure to place the port in his major artery in his chest and then on Dec 10, his chemo and radiation will begin. Lucas had a nice day at the Zoo and had some shrimp at Charlie Brown's per his request. We thank everyone once again for your support and help.
Friday, November 22, 2002 at 08:21 PM (CST)
Today, Lucas asked us some questions about how it will be in the hospital and that he is a little scared about the chemotherapy, but he was OK with our explanation that he will be strong.
Friday, November 22, 2002 at 08:07 PM (CST)
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