March 2007 Archives

Well we are back home after almost ending up admitted today. After Simon had his ivig and pentamadine infusions on tuesday he has been slowly breaking out in a rash. By last night it was pretty bad. He was up every 40 minutes crying and at 2 am throwing up everything and all over me. After I showered at 3 am I pulled him in bed with us and 20 minutes later he was asking to go back in his crib. He was just that uncomfortable. WE gave him tylenol and he slept a couple of hours. BY morning he was so red and swollen and inflamed that you couldn't touch him. I picked him up and he shook from the pain and cried. I gave him more tylenol and took the girls to school returned and decided I needed to take him in. We saw stem cell and dermatology and they concluded it was still erythema multiforme which they think is drug induced by maybe pentamadine since this seems to come up once a month right after the infusions. We are home on motrin, hydroxine and tylenol with codine if necessary for the next 3 days. Please pray that this heals quickly and doesn't form into any other infections.

We have Jack Hagelin and his family in our thoughts constantly especially these next two days. Jack was made an honory firefighter and so he is having a full firemans funeral with 3 fire trucks and all. God Bless you Jack. You are in our hearts and we will miss you. Please pray for strength for his mom, dad and sister. Below is some information if you would like to help the Hagelin family. Thanks. Tracy and David

Hagelin, Jack R.S. passed away on March 27, 2007 of Fairfield, NJ. Beloved Son of Roy and Charlotte Malfitano-Hagelin, Brother of Christina. Grandson of Ruth (Unger) and the late Salvatore Malfitano, Reed Hagelin and Marilyn P. Hagelin. Visitation at the Quinn-Hopping Funeral Home, 145 East Mount Pleasant Ave., Livingston, NJ on Friday from 3:00pm to 8:00pm. The funeral Service will be conducted from the Funeral Home on Saturday at 10:15am with a Funeral Service at St. Thomas More Church Fairfield, NJ at 11:00am. Interment Reformed Church Cemetery, Fairfield, NJ. In lieu of Flowers, those so desiring may make contributions to the “Found NEMO-Finding Cure Foundation” in Jack’s name to PO Box 366, Pine Brook, NJ 07058. www.cure4jack.org

Today our hearts are saddened by the passing of our dear friend Jack Hagelin. He has been asked by God to join him and was given his wings last night. Jack and his family were our first NEMO contacts and they have been there for us to support us and help us understand the NEMO disease. The Hagelin family have become part of our family and I spoke to Charolette, Jacks mom, all the time about our boys. Jacks battle with NEMO is over and he passed not having the NEMO disease at all. His NEMO was fixed and he was free of the bad NEMO but he contracted para influenza which is a viral pneunomia and his little body just couldn't take any more. We are asking that you please keep his family in your prayers. Charolette and Roy have been such an inspiration to us all of what love and faith and strength can prove to be and they have helped us to become that too in our battle to save Simon. This hits home for us and we are so sad to hear of this news. Please go on to cure4simon or cure4jack to get details on arrangements and how you can help the Hagelin Family. Jack you are not gone from our hearts and we will continue to do Gods work that you started down here as you watch over us. God Bless you Jack. You have always been a strong hero to us.

After a long day at Childrens we are home and sleeping soundly, well I'm not of course but the kids all are. Simons counts are awesome today. We are so thankful and feel so lifted right now. I hope the feeling continues into the next century and beyond. He received IVIG and pentamadine today and was really yucking it up with the ladies in the ASCU. He was calling all their names and saying hello, goodbye and calling "jenny, jenny" waiting for her to keep walking in, calling trina and kim, it was too cute. Hes such a ham. They loved him up. After our long stay there we headed to pediatric surgery to get simons venus port checked as hes been annoyed by it alot and I was worried. He also had his g-tube pulled out and a new one placed back in the ole tum tum. He was great and didn't even cry when I cringed as Terri pulled it out. ERRRR I never was one for hospitals and the stuff that goes along with it.

Isabel had a 2 day 104 fever and we tried very hard to keep her and simon apart. Washing down everything a couple times a day with clorox wipes and now she is better. I pray Simon skips the virus. Marr has a cold now so tis the season to be extra careful. Please pray Simon skirts past it all.

Thursday Dave is taking the day off and we got the "ok" to go to the zoo with my sister and her family. It will be the first time we have all been together since summer so we are very excited and hope things go as planned.

We go back to stem cell on the 10th to meet the new immunologist and try to get him on board for future care. We are hoping he will be talking to Dr. Uzel in Washington and will become well informed of NEMO and what to do so we can have a Chicago doctor and still confirm things through her. So that is it. Please pray for continued health, healing, noninfections in Simon and 99%+ vntrs for a lifetime of health for simmy. Thanks for keeping up with us. We truly appreciate it. Love Tracy and David.
Oh and Devon and Bridgett we miss you guys, stop to see us on the 10th in ASCU if your in (bridgett come in just to see us 9am). You'll be amazed how simmy looks.

Raise money for the National Federation of Ectodermal Dysplasia simply by clicking your mouse! GoodSearch.com (powered by yahoo.com) is donating money to charities for use of their search engine. To use it, install the GoodSearch toolbar to the top of your browser screen and then type in the charity (National Federation of Ectodermal Dysplasia) and then search as you would on Google.com or Yahoo.com. The NFED gets a monetary donation for every search! The more folks that know about this, the greater the donation to NFED, and hence the more money there is to fund research on Simon's condition and others like his. Thank you

What a gorgeous day outside. We plan to take advantage of it after Simon naps. The girls and I will get out now I think. Anyway its been a busy week of appts for Simon. All went well. The dentist said he wouldn't recommend doing anything at this point until we are at least 1 year minimum post transplant. Its too risky for infection. I agreed. He felt two top moulders but nothing on the bottom. With the ED kids don't get their teeth errupting very quickly and sometimes they just stay under the gums forever. Most likely he will get a few more. Right now we are still at 3 front ones with a 4th coming in. He will most likely get dentures around age 3 so about a year to go. We saw dermatology today. Dr. Mancini was amazed how good he looked. Good hair growth (kids with ED don't have normal hair but Simmys looks pretty good), his skin is calmed down since he last saw him and he is happy all the time smiling. He does have a suspicious looking mole that we will be removing maybe a year from now. Dr. Mancini says he sees that alot in post transplant patients. We saw our nutritionist too. Simon is up 10 oz to 23 pounds. That makes me smile. He had his little button down gap shirt and jeans on today and he looked like a little man. Too cute. I need a digital camera so I can share with all of you. So overall, things are going well. Prayers always wanted daily if you can squeeze us into your prayer list for continued healing, growth, continued 99% donor cells and no infections. He sees stem cell Tuesday for all blood draws and IVIG. So you will hear from us next week again. Please pray for Jack and Jacob who are having a bit of a rough time now. They need your strength. God Bless and enjoy Spring. Love Tracy and David

Well Happy St. Pattys Day. We ate chinese today, go figure. I just got done reading all the NEMO boys blogs. Some families haven't updated for a while. I have to tell you this disease is all consumming and draining and the ups and downs of it all really bring you down some days and its hard to pretend or be upbeat about it all. I know all of us families put on a pretty good front, like we are holding it all together, waiting for it all to be "better", but the truth is, everyday is hard. Every single day has worry and anxiety over the right thing to do, who to call for the answers you need while you sit in your house day after day because you can't expose your son to germs that could really affect his life right now. We do have fun at home, we do play and get silly and all of that but for me, as the mom, the care taker on the 24 hour schedule of monotony, it is really hard. I am not complaining or looking for pity I am just letting you all know, sometimes we don't blog because its too much to sit down and recount the events of the day after day "sameness" that Simon goes through. We thank God everyday for the engraftment of 99% and keep praying it holds strong and steady. Anyway, I want to keep up with the blog but there really isn't much going on that we haven't dealt with everyday for almost 2 years. We had some of Simons vomitting issues come on strong the last two days with vomitting to the point of dry gagging while I hold him over the sink first thing in the morning. Its really difficult to watch someone so small bringing up a 4 ounce bottle with such force. It really sets my mood. I hate to say it but it bothers me so much that I become crabby for the next hour after it happens. I try to let it go. Usually by lunch he will eat something, take a bottle and go down for a nap. He has alot of things on our schedule this week. We see the dental specialst on Monday, therapies two days, dermatology Thursday and Friday I register the girls for kindergarten. Hard to believe they turn 5 this summer. I really have watched them become little girls the last few months. They are wonderful and sassy. haha.

We are so thankful to be at the place we are with Simon. He is doing well with numbers and things and very spirited and busy, running all around and keeping up with the girls and chattering alot. Its so nice to see him so alive. We pray for continued healing and that we may soon be able to venture out into the world and let him see faces besides our own. We continue to pray, for Simon and all the boys who we have come to know and their families. God Bless Us All. I'll let you all know what the dentist says and post some new photos. Simons hair is coming back and hes really looking cute"er". Love Tracy and David

Quick update, Simon has hit day 100. It doesn't mean alot, really. I still have to keep him isolated and monitor every single thing but his counts were good at clinic and all seems to be going well. VNTRS came back still 99% YEAH so thank you all for the prayers and keep them coming. He has gained weight, in length and head size. So beside having a really bad day yesterday of vomitting and not eating a thing, today he seems great. Has eaten and had a snak and will hopefully eat a small lunch. Marriana has a fever and is not feeling well so I am fearful and trying to keep them apart. Hopefully it will be a 24 hour thing and we can keep it from everyone else. We gave Simon a paint brush today and he ate it, not good, but then we did a nice water color while the girls worked on their oil paints. So all in all today is good. Keep praying and I'll keep you posted. God Bless. Tracy

Hi everyone sorry I have been out of the loop with blogging for Simon lately, things seem crazier than usual. I spent the first half of last week trying to coordinate and figure out what to do for simons skin and his vomitting. I was e mailing with our immunologist in Washington at NIH and the doctors here regarding stopping meds and not stopping them and what to do about Simons persistent vomitting at the first meal of everyday, which sometimes he does not take until 11am. Thankfully we have a plan and it is going be ongoing for the next two weeks until Dr. Uzell at the NIH can get some cultures and stain studies back on Simons skin. They have detected some herpes virus in the studies here and we are doing what we have to to rule out microbacterial infections. Immune deficient kids are prone to herpes infections, not sure why but they are and it just seems to be in their system, so we will see. We also are now doing scheduled monthly ivig infusions to help his immune system fight off infections. We were doing these but not scheduled and its just better this way.

Day 100 is approaching, what does it mean, not much. You still have to be cautious as you are and not go out around alot of people and really its a milestone by numbers but not much else.

Dave took simon to clinic today and his counts are stable. VNTRS were drawn today so we will know in the next day or two where we stand with donor cells. We know marrianas strong cells are still 99% but say a prayer for us anyway. He actaully gained some weight and he is up to 22 pounds. It feels good to see that happen. God knows I try hard to get the calories in in spite of the vomitting. We can't wait for the day to not have g-tube feeds. I pray that day comes within the year.

He is sprouting two more fange looking teeth in the front and we see the dental specialist on the 19th of March to see what if any more are there and the shapes and what to do. I keep thinking by some miracle the back ones are normal so at least he can chew. Its taking a long time for them to come in. It will change his whole look but the personality is amazing.

So I picked him up a very adorable Easter outfit today because God willing we will be spending it with my sisters family and he needs to look cute for his first ever family holiday celebration. We also got our first pair of walking stride rites. You go my little simmy.

Well keep all the NEMO boys in your prayers and pray that little by little they all prevail and their affects from this horrible disease lessen. God Bless you All. Love Tracy and David

Rhys resides is the UK. He has NEMO and has been affected by this disease for 5 years, he will need your prayers and we ask with all our heart that you pray for him and his family. STAY STRONG RHYS, we will be praying for your. all our love and hope. This my friends, is what NEMO can do to you. Remember we are not far enough out of the woods, we need your prayers. Rhys is a boy in our NEMO circle. Please keep him in your prayers, we always do.

It is the modern equivalent of living in a sealed plastic bubble.

And it is also the best chance of survival for a desperately ill five-year-old.

Rhys Harris is to spend up to nine months living in an air-tight chamber measuring just 40ft by 40ft.

He will be cut off from the outside world to allow his immune system to recover after being rebuilt following a bone marrow transplant.

The sterile ward, which is located behind three sets of doors, will have a special canopy over his bed to filter the air that he breathes to make sure he doesn't catch an infection.

His parents, Dawn, 36, and Kevin, 42, will only be able to see him when they have scrubbed up and put on surgical masks and robes.

Even then they won't be able to kiss him goodnight in case they pass on a bug that could prove fatal. Without the pioneering treatment, Rhys could have only 18 months to live.

He is one of only 35 people in the world to suffer from NEMO, a disease that destroys the body's immune system. His best hope of survival is intensive chemotherapy followed by a bone marrow transplant.

Only two people have ever undergone a similar sealed room procedure and it will be the first time it has been attempted in Britain.

The process will be even harder as Rhys was left profoundly deaf after suffering a bout of meningitis at nine months old and was diagnosed with TB last year.

Rhys' father said: 'We know it is a slim chance but we have to take it. The flipside of the coin is not worth thinking about. We need to be positive.

'Rhys is going to have to live for several months in a clear unit behind door upon door upon door.

'There'll be a little red line round his bed over which no one can pass - we won't be able to hold him or hug him or anything - all contact will be very limited because he'll have no immune system whatsoever during the first three weeks of chemo.'

After four weeks he will move into a 40ft by 40ft yellow square so he can walk around and will remain there for at least eight months.

His brother Morgan, four, will be unable to see Rhys face-to-face, but will stay in touch with him via a webcam.

His family are moving from their home in Newbridge, South Wales, to Newcastle ready for the treatment at the city's general hospital.

The medical team is still searching for a bone marrow donor, ideally from someone who has had TB. Six good matches have already been identified and doctors hope to start treatment in April.

Rhys' parents have since set up a website - www.cure4rhys.org - to post updates on the boy's battle.

God bless you Rhys, you will prevail. Love the Gutierrez Family